Not That You Asked

Up to His Old Tricks

2012-01-24T08:47:00.000-08:00

Jude has escaped his teacher or aide in the school building twice this year. Once in the fall, and again yesterday.
He's a runner, a flight risk. I have told the school this every way I know how to short of skywriting. When he did it in the fall, they were right on his heels and he actually did exit a door and LEAVE the building, but didn't get but a few feet out onto the sidewalk before he was dragged back, him laughing hysterically and the aide who had been chasing him having had years sucked from her life. When his teacher called to tell me about it, she was nervous and afraid that I would flip out, probably. I didn't. All was well in that he was found and safe, and I am familiar with his work. I was actually sort of glad it happened that first time. Now, I thought, they get it. They know. They won't take their eyes off of him and it won't happen again.

But then it did.
Yesterday when his teacher called to tell me about his escape, she was crying. Jude had not left the building, but he really got away from them this time. She didn't know how long he had been missing. She said it felt like maybe an hour. AN HOUR.

AN HOUR.

They had every administrator and available teacher out scouring the building for him. When they finally found him, he was in a whole other wing of the building from where he had escaped and had himself quietly perched up on a ledge above a drinking fountain. He wasn't laughing this time, didn't seem proud of himself. But he wasn't upset either. He was just chilling there on the ledge. Probably didn't know how to get himself back down once he was up there.
The first escape had been in the hallway when he just ran from an aide and turned a corner and she didn't know which way he went, so the search ensued. It was all very quick and tidy, but just "whew, that was a wake-up call!" kind of a thing.
This time Jude had been in the classroom with his teacher and an assistant and he just bolted out of the open door and away before they knew which way to even look.

Now what am I supposed to do with this? I felt bad for the teacher because I know how fast and unpredictable he can be and because she works so hard with and for Jude in so many ways, but really? They know how he is. They know he isn't safe and that he WILL run. Should this have happened again? Missing children situations don't always end well.

I know this first hand.

I hate to call a big meeting, because I fear that it will only lessen the few freedoms that Jude now enjoys at school. He already spends so little time in the first grade classroom with his peers that now I am afraid he'll be on lock-down. School jail. But is this what it takes to keep him safe? Jude also has been attending his own neighborhood school with his brother, though in our rural community the school with the life skills track and all the great resources for kids with mild to moderate disabilities while still spending as much time as possible in the general education classroom with peers happens to be in a different location, an alltogether different district.
Oy.

Ok. I just got off the phone with the principal. I feel better. It wasn't really an hour, for one thing. Much less. Maybe 10 minutes. Though that is about the time it took our son Seth to find that swimming pool. As you might imagine, this missing child business would be upsetting for any parent. For me, it is much more than upsetting. It is a nightmare that I have already lived once and continue to relive in my head every day since. It simply can't happen again.

Sunday Thoughts

2012-01-22T12:35:00.000-08:00

It's been a long, long time since I posted anything here on the ol' blog. I was just recently bragging to my friend Stacey about how evolved I am these days, not needing so desperately anymore to be understood by people. Stacey says that's one of the many benefits to being over 40. You stop giving so much of a shit what everything thinks. It's true.

I used to blog all the time, almost every day. At least a few times a week. I first started in the winter when my twins were about a 18 months old. I am a stay-at-home-mom (well, I substitute teach a little now that my littles are in school all day) and I was seeking connection to others. One of our twins has Down syndrome, for those of you who might be joining this program already in progress. I was looking for others out in the blogosphere who could relate and advise and encourage and such. And it turns out blogging was a good way to meet a lot of people I wouldn't have otherwise. I did find community through blogging, thank goodness. It got me through some bleak moments in those early days.

Now, my oldest is away at college, my "little" girl is a freshman in high school and will be driving soon and my babies are in the first grade. These years have gone by so fast! And so slow! All of time is that way, I think, though the years do seem to speed by more quickly the older I get.

The thing I miss most about blogging is the writing. How is it that I can sort through things so much easier when I write them down than if I am just kicking them around in my noggin?

Early this morning on the news, a grieving military mother was discussing the experience of burying her 20-year-old son. She said, "God needed another angel in heaven." I've heard that before. A few people told us that is why our two-year-old son Seth died eleven years ago when he escaped our back yard and wandered into a neighbor's swimming pool. I know that people tell themselves and others all kinds of things to try and soothe the agony, to try and make sense out of the tragedies of life. I do dislike this particular sentiment, though. I feel like, well, he's God, right? He could just make another angel. He doesn't have to just pluck young people from Earth for that.

I wrote something to that effect on facebook this morning, but then lost my ballz and took it down a few minutes later. I could hear the voices in my head that were saying, "But Seth was never really yours to begin with; he was only on loan from God, " or "The Lord gives and the Lord takes away," or "It is not ours to question the mysterious ways of the almighty Creator of the Universe." That sort of thing.
So I took it down, but I haven't been able to get it out of my head since. I feel like we all just rehearse these little sayings to one another about God's love and about his divine will and about his sovereignty and that we are not to question all the atrocities of life because it's all part of his perfect plan. Well, I guess I'm just not inclined anymore to believe that is the case. I don't know how things work, but the idea that involves an omnipotent God who micromanages our lives and plants all sorts of bombs within them to serve his own mysterious purposes and yet yearns for our love and adoration...it just doesn't make sense to me. And this coming from a well fed American who lives indoors and has very little to complain about.

I am not saying that there is no God. I don't believe I'd ever be bold enough to make such a statement about something that is inherently unknowable. But I am saying that I don't think he works like that, taking adventurous toddlers or brave soldiers because he needs more angels. There's no way that's right, and I don't understand why anyone finds comfort in that idea.

Alternate Reality

2011-04-09T06:28:00.000-07:00

Last night Steve and I took the kids to the movies. Steve, Simon and Jude saw "Hop", and Chloe and I saw "Source Code". Afterwards, when Steve was trying to exit the theater with Simon and Jude, he looked down and realized that Jude had taken off one of his socks and shoes. He bent down in the darkness to try and locate them, looked up and realized that Jude had gone under the rail and escaped down the aisle! He and Simon were trapped in behind everyone else exiting in front of them and couldn't just trample over them to get out and chase Jude. Luckily, our movie finished first, so Chloe and I were already in the lobby and caught Jude when he came running out of the theater, wild-eyed and laughing maniacally. Steve and Simon followed shortly after, Steve also looking wild-eyed and scared out of his mind. He was so furious with Jude that he first had to give him a tongue-lashing before going back in to continue trying to find the shoe.

I continued to let Jude know how bad that was to run away from his daddy and Jude shook his head in agreement, then bowed it with remorse. The trouble is, I can never tell if he's sorry about what he's done, or just sorry that we are mad at him. Can he connect the dots between the two things? I really sometimes do not know.

On the way home, I let my mind briefly wander to the dark side, considering the different scanario tonight had Chloe and I not been in the lobby. Where would Jude have run? What if someone in the lobby had scooped him up and made off with him? What if, like John Walsh, we were getting a phone call from the police weeks later about having found Jude's body in a river somewher?. I looked back into the car and saw everyone safely buckled into their seats and imagined how differently the night could have gone with us all in the lobby of the theater giving Jude's description to the police (he was wearing blue sweat pants, a red t-shirt, blond hair, hazel eyes, about 38 inches tall...and missing a shoe and sock on one foot)
I felt panicked for a moment, nauseous. Then I snapped back into reality. Everything is fine. Chloe and I were there and he is fine.
Still, after having had the worst imaginable thing happen, it's easy to realize that these things do happen, and they can happen to me. Any sense of security/ safety/ protection that we might have felt in our younger years is just gone. I have said it's like living life, always waiting for the other shoe to drop. I have joked (I have a sick sense of humor) that I was going to cross stitch a sign to hang over our mantle that says in ornate script,

"Any shitty thing can happen at any time."

Wouldn't that be lovely? What a wonderful reminder for friends and family.

But, it's true.
It can.

The movie "Source Code" was kind of about alternate realities; kind of like "Matrix" or "Inception". Jake Gyllenhaal's character asks another if she thinks there is such a thing as another version of herself living a different life alongside this one: didn't marry and divorce. Married someone else. Made different choices a the fork in the road.
I think about that. If Chloe and I had lingered in the theater last night to watch credits, things would have gone differently.

The day that Seth died, if any detail of that afternoon were altered, maybe he would still be with us today.

Today is Seth's birthday. He would have been 13. It's hard to imagine it, since he was 2 on the last birthday we celebrated with him. I like to pretend every spring that we are planning his birthday party. I imagine what we might do. In my alternate reality, I am disappointed each April 9th if the weather is bad because it will spoil our outdoor party plans. A little crazy, I know. I admit to some mental illness over our loss of Seth. How could it be any other way?

The First of the Kennedy Tragedies

2011-04-08T09:03:00.000-07:00

I am loving "The Kennedys" mini-series on the Reelz channel. Greg Kinnear is great as JFK; Barry Pepper is great as RFK; Tom Wilkinson is doing a great job portraying the SOB patriarch Joseph Kennedy; Katie Holmes, well, she looks cute in those little outfits.

Last night I learned about Rosemary Kennedy, Joe and Rose's third child and first daughter. At an IQ of somewhat less than 100, she was deemed mentally retarded by Kennedy standards. Though her diaries show that she was literate and could do arithmetic and went to dances and worried about such things as disappointing her father, she just couldn't keep up with her siblings. When she was an older teenager, she began having terrible mood swings and would sometimes get violent. After she was sent to a convent, she kept running away. Her father began to worry about her safety and also reportedly that she would become pregnant and cause the family shame. He agreed to a procedure, then experimental, called a prefrontal lobotomy. The expected outcome of this procedure was that his smiling, happy, and docile Rosemary from childhood would be returned.
The procedure was described by one of the surgeons in his notes:

"We went through the top of the head, I think she was awake. She had a mild tranquilizer. I made a surgical incision in the brain through the skull. It was near the front. It was on both sides. We just made a small incision, no more than an inch." The instrument Dr. Watts used looked like a butter knife. He swung it up and down to cut brain tissue. "We put an instrument inside," he said. As Dr. Watts cut, Dr. Freeman put questions to Rosemary. For example, he asked her to recite the Lord's Prayer or sing "God Bless America" or count backwards. ... "We made an estimate on how far to cut based on how she responded." ... When she began to become incoherent, they stopped.[3]

Instead of the hoped-for results, the procedure left Rosemary with an infantile mentality and incontinent. She lived that way in an institution until her death at age 86 in 2005. Her mother and her sister Eunice (who would go on to found the Special Olympics) visited her often. Her brother Ted and sister Jean were by her side when she died.

So very sad.

On being "the other one"

2011-04-05T12:56:00.000-07:00

On Being The Other One is the title of a book I read shortly after the twins were born. It was a collection of thoughts from a group of people who had grown up with a sibling with a disability. Most of them were bitter about the experience. They thought they had not been given enough attention, that family life revolved around the disabled brother or sister, and well, that just life in general had been worse for them because of that circumstance.

I don't think it's realistic to think that a person's experience with a sibling would be all bad or all good no matter what, disability or not. Human relationships are just work sometimes, even if everyone has the right number of chromosomes, can walk without the use of a wheelchair, and is perfectly healthy physically and mentally. I think everyone can expect some hiccups in their sibling relationships. Disability is a big hiccup, I know. I know it's not all rainbows and butterflies, but I don't think it has to be the end of the world, either.

Here's something Simon has been struggling with: when our family ventures out into the public arena from time to time, Jude often gets treated like a rock star. Strangers approach us to say hi to him and tell us how cute and precious he is. People drop everything and cross entire rooms to get to him, scoop him up, hug and kiss him, tickle him, and generally adore him beyond all reason. Jude eggs this on by running up to people who haven't first noticed him and attaching himself like a barnacle onto their legs. People find this endearing, for the most part, and reciprocate the affection. He's a hugger, no question.
Simon, on the other hand, did not get the hugging gene. He may extend his hand for a shake, or even his fist for a bump, but he will not attach himself to you and certainly not kiss you unless you share his DNA.

It didn't occur to me how Simon might process all of this attention on Jude everywhere we go. Because Simon doesn't assert himself the way Jude does, he often fades into the background in these situations.
Recently, he told me that it makes him uncomfortable. He doesn't know how to act. He doesn't want to join in the hug-fest, but he doesn't want to be ignored, either. I suggested that he high-five or something so that he can greet people, too, without all the close contact.

Last weekend we were at an event at Jake and Chloe's high school. Jude was getting his usual rock star reception from one of Chloe's friend's dad while Simon was invisible. He pushed his way into the center and said loudly, "Hey! WHAT ABOUT MEEEEE!!?" The dad looked surprised (as was I) and said "Oh, hey, little dude, how are you?" Simon then put out his fist for a bump and smiled.

It was good, I think, that he figured out at the ripe old age of 6 that he does have some control over situations that he doesn't like and wants to change. I can control how I treat the two of them so that one doesn't feel like the invisible, less important, less loved twin, but I can't always control how others treat them, so it's good that Simon has decided to speak up and make himself known.

You knew I couldn't stay away forever.

2011-03-30T13:03:00.000-07:00

Well, I'm back.

I have decided to resurrect the old blog. Shortly after I decided to end this one, I was having withdrawal and started a new, "secret" blog at Wordpress. I didn't stick with it. I feel so much more tied to this one. I started it when the little boys were just wee babies and it has become like an old friend...and old friend that I broke up with but then realized that I missed and couldn't live without afterall.
I blogged secretly for a while because it came to my attention that this blog was making my mother "sad" to read. I have never grown the ballz to ask her directly why that was the case, but I assume it had to do with my expression of doubts about faith. I think better in writing, weirdly, and needed a place to go where I could continue to explore that topic without censoring myself for fear of hurting anyone. So I did. But I lost interest. Not in the topic, but just in the new blog. In the meantime, I've dialed back the intense need to get it all wrestled to the ground upon the realization that it is impossible. It is a lifelong journey. I have also realized that the less I say about it publicly, the better. It's nothing to be hurt over or worried about. It's personal and ongoing and "that's all I have to say about that" (Forrest Gump).

So much has happened since January. Where to begin? Here's a brief synopsis:

Steve: Started a new job at a huge hospital in a nearby big city. He works 7 days on, 7 days off. He's a hospitalist, which means that he takes care of admitted patients while they are in the hospital recovering from surgery or just sick as hell. That's probably not the official AMA definition, but close enough for our purposes here at Not That You Asked. Every once in a while, it's a week of nights, which he says are brutal beyond all reason. However, he loves it. It was a great opportunity and I'm very happy for him. Oh, and once every 3 months, he gets 3 weeks off in a row. 3 weeks! My mind is swimming with all the cool trips we could take in our camper (that we don't currently own) with 3 weeks off quarterly.

Jake: Getting ready to graduate from high school in about five minutes. When I started this blog, I think Jake was 13. Where did the time go? I know all parents say that about how fast their kids grow up, but damn. It's true. I can hardly talk about it without getting all verklempt. I will miss him like caaaraaaazy cakes, but am so excited for him about the next steps of his young life. He's a great, great kid. Like his mother, he tends to overthink everything, so he still hasn't decided where he's going in the fall. He's got it narrowed down to 2 possibilities, both of them excellent choices. So we'll see. In the meantime, he made a lot of roast beef sandwiches @ Arby's, did show choir again this year (jazz hands!), participated in the solo competition (I truly didn't even know he could sing), went on spring break in FL with some of his senior friends, is in track again this spring, and is getting ready to go to prom. Pictures will be forthcoming.

Chloe: Finishing up middle school in the same aforementioned five minutes. I went with her a couple of weeks ago to freshman orientation at the high school. Truly cannot believe that my baby girl is going to be in high school. She'll be 15 this summer, learning to drive (yikes), and she's currently playing soccer at school in large part due to the fact that Jake told her she has to do a sport. It is a big-brother-mandated rule in our house apparently that you can't just do show choir. Whatever. She truly hates soccer, but it gets her out in the fresh air. If she had her druthers, she'd hole up in her room reading books and singing show tunes all day and night. Also like her mother, she is a bit of an introvert and enjoys lots of alone time. Every once in a while, she looks up and realizes that she would enjoy some human companionship and has to rekindle friendships. That goes on for a while, and then she goes in her shell again. That's the cycle. She's adorable, and funny.
Over spring break when he was getting on her last nerve, she told Jude that he smelled like "spit and badness". I laugh because it's true.

Simon: Getting ready to finish his first year at all-day school. Kindergarten has been great for Simon. He's gotten along well and learned a ton. He's a "silly heart and doesn't take one thing in his academic career seriously" (Uncle Buck), but learning and doing well in spite of this. He played basketball for the first time this year and really liked it when he wasn't busting out dance moves or practicing skipping on the court instead of engaging in the game. Simon loves video games, playing outside, his bunk beds, and Spongebob. He looks so much like a picture of his dad at this same age that it's just plain spooky. They could be clones. He's getting ready for baseball again this year, which is coach-pitched within reason, then they break out the tee. I anticipate the tee, God love him.

Jude: Jude has also really enjoyed kindergarten. One of his strengths is his memory for routine. School is full of all kinds of routine, so in that way it has been a success. He continues to struggle with communication, which occasionally leads to frustration which leads to undesirable behavior. That is to say, Jude spends some time each day in the so-called "no-no square" for offenses like hitting, kicking, pulling hair, fleeing the scene. It's cute. All I can say is, we're working on it. The excellent news is that Jude is in big boy underwear full time now! Day and night! With very few accidents! LIFE CHANGING. So happy about this development, I can't tell you. He just was finally ready to cooperate and as soon as he was, it was just overnight success. This summer Jude will be playing "Dream Team" tee ball with other special needs kids and also we're going to try a (semi)competitive swimming league. I'm told it's low key, so we'll see about that, too.

Me: Well, if you know about my family, you know about what I've been up to, because that's kinda what I do. Chewing through books on my Kindle, driving kids to stuff, going to kids' stuff, laundry, shopping, cooking, cleaning, and going to the Y. "It's boring, but it's my life" (Ron Burgandy).

It's nice to be back! How can I miss a blog? And yet, I have.

In 2011, Not That You Asked Says Adieu

2010-12-29T16:59:00.000-08:00

I've been writing on this blog for a long time, since the boys were just babies, and now they are six. I've spent a lot of time here. There's been a good deal of nonsense, some purging and gut-spilling, painful retellings of the mundane details of my life, and more nonsense. It's been a great diversion and I've both loved and hated it at different times. I've met a lot of people here and made some great friends.

However, it's time to move along now. I'll leave what I've written up, mainly because I don't want to print it all out and can't figure out how to save the whole thing. Also, maybe someone will stumble onto some of the things I've written about grief or raising a child with Down syndrome and find any of it helpful.

Please do leave a comment if you've been a regular reader. I'd really love to hear from you! Also, I've set up an email account where I can be reached at beth.notthatyouasked@gmail.com
Thank you so much for reading!

Early Christmas

2010-12-24T18:12:00.000-08:00

This year, Steve is working a 24 hour shift at the hospital on Christmas, so we celebrated a day early. It worked out great. We told Jude and Simon and we sent Santa an email asking that he deliver their toys one night early, which he was happy to do, of course. Tomorrow Jake is working at Arby's, too. Can you believe people go to Arby's on Christmas day? He said he actually gets mad at families who come in with their kids and order the kids' meals with fries and Cokes when they have the option of fruit and milk. Plus, he refuses to eat any of the Arby's food, anyway. He's a snob like that. It's annoying. He's making the rest of us look bad!

Jude has a funny new thing he's saying, which we heard a lot of today. When we get after him about something and then say, "Okay?" to see if he understands, he says "'day"...you know, like "kay" except he doesn't say the "k" very well, so it sounds like a "d". Anyway, when he is mad about it, he'll say "DAY, mom!" and it's so smartass and I have to hide my face from him so he doesn't see me laughing about it.
"Day, Mom! DAY!!"

My parents are still here. My mom told me today that she quit reading this blog a while back because it makes her sad. I wonder which parts. I guess I probably know.
I threaten constantly to end this blog. Especially now that I know I'm leaving dead and wounded in my path of hurtful words. I know I need to keep some of my thoughts about things to myself, but I just don't work well that way. I'm a heart on my sleeve kind of girl if ever there was one. Still, over the past year I can see that my being that way has caused some of the people around me pain or at least discomfort. Sometimes it truly is best not to get involved in conversations. I don't have to say every little thing that is on my mind, even (maybe especially) on this blog. I write it for my own benefit and then forget that other people actually read it.
Maybe a journal would be a better idea for me.

In the meantime, Merry Christmas and Happy New Year to all of my loyal readers (crickets....)

Jude's Happiness vs. Mom's Sanity

2010-12-21T06:52:00.000-08:00

This morning when I dropped the boys off at school, Jude's teacher, who happens to be helping run the Upward basketball program that Simon is playing this winter, asked me if it would be okay to get Jude a t-shirt and a pair of pom-poms and stick him out on the floor with the cheer team. She said it's all girls, but he would have a blast and it would be a way for him to participate. He is in no way ready for basketball--Simon barely is.

My initial reaction: Hells,no. I'll likely think about it for a few days and talk to Steve and still conclude no. Do I really want to have to pop a Xanax on the way to each of the games? Would Jude have fun and be adorable out there? Well, sure. But would he also be whacking the other girls on the head with his megaphone and running out onto the floor in the middle of the game? Um, yeah. He would. Also, there's this thing I have about feeling sometimes that Jude is on display, that all of us are. Sometimes I don't think it's all bad to protect ourselves from that. Everything can't be about what is "fun" for Jude. Sometimes what is tolerable for me has to factor in, too.

I told Jude's teacher this morning that I would get back to her, but I can't imagine that we'll do it. I don't want her to think that we intend to make Jude a spectator his whole life. I did mention that he had done t-ball on the typical community league last summer right alongside Simon and that it had gone okay. I didn't mention how after the first game I told my neighbor that I would need to do waaaay more drinking before the next game. When baseball becomes coach-pitched this summer, we intend to sign Jude up for the "Dream Team" instead, which is a t-ball league designed for children with disabilities. When he turns 7, there's Special Olympics, too. There are all kinds of possibilities out there for Jude. As much as is possible, I'd like him to participate in sports at school, too. I have heard about kids with Down syndrome on their school's track and cross country, golf, and swim teams. We have no plans to limit his participation in life to the friggin' full-tilt fullest that is Jude! But Upward cheer? Now? Probably not.

Happy 6th Birthday Simon & Jude

2010-12-20T21:04:00.000-08:00

Old Friends

2010-12-14T09:15:00.000-08:00

Today I met a woman for breakfast that I hadn't had a conversation with for over 10 years. More specifically, I hadn't had a real conversation with her since the weeks surrounding Seth's death.
I'll call her Marie, because that's her name. Marie was the youth pastor's wife at the church we attended at the time. She and her husband Brian had known Steve from way before that even, because they had all gone to the same college. Brian had been at the ER with us when we got the news that Seth had died. He drove us home from the hospital, where we had just left our baby in the care of the people from the funeral home. Marie made almost all the phone calls for us that evening to friends and family to deliver the news and to give information regarding the visitation and funeral.
They weren't the best of times.

We never went back to that church and three years later, we moved away and so did they and we just never reconnected.
We had a lot to catch up on. We laughed a lot, had delicious quiche and coffee, and cried a little, too.
She said that she still has dreams about seeing Steve burst through their door that night asking Brian to take him to the hospital. It was so long ago, but still feels so...raw. Especially this time of year.
Anyway, it was good to see her again and to rekindle that friendship. New friends are great and you can never have too many, but there is just something to be said for old friends.

Jake & Chloe at the Choir Christmas Show

2010-12-12T17:48:00.000-08:00

They're cute.

Gifting

2010-12-10T11:29:00.000-08:00

Why has this word "gift" become a verb? And does it bother anyone else besides me?
In an older, better time, you gave someone a gift. Now, you gift them with a gift.
The TJ Maxx ads this season (the ones with the singing people on the escalator) says something about all your "gifting" needs. Why aren't they giving needs? Why are we gifted now rather than given a gift?
Why are gifts re-gifted rather than re-given? Giving is a perfectly good word. We had all the forms of it: give, giving, gave, have given, will have given. I don't get it.
As for me and my house, we will give this Christmas season, not gift.

Family Pictures are the Devil. Oh, and Merry Christmas!

2010-12-09T04:37:00.000-08:00

We had a friend come over and take these pictures for our Christmas card. You should've seen us all running around this house in complete chaos just minutes before she arrived. I had been at speech therapy with Jude and got home just in time to throw on a different shirt on me and on him, too, run a quick comb through the boys' hair, Chloe's bathroom looked like a terrorist bombing had occurred there, and Jake and Steve emerged in clashing plaids. Steve changed. We might have considered planning it out a little better. We actually didn't want to match exactly. Like Stacy London and Clinton Kelly from "What Not to Wear" say, it doesn't have to match, it just has to "go". But I knew that I would wear black and that was non-negotiable. It's kind of a rule for living of mine. If you have black, wear black.
Anyway, Merry Friggin' Christmas from our family to yours!

Do you see the missing rivets on our ottoman on this picture? I do. This was Jude's only great smile of the night.

Dimmi

2010-12-06T06:40:00.000-08:00

Dimmi is Italian for "tell me". I have learned about a brand new social networking website that is designed to help people who are either personally dealing with a diagnosis or condition or who are caring for someone who is. You name a condition, it's probably there and if it isn't, people can create new communities.

The idea is that when you talk about it, you feel better. Making connections with others who are going through the same thing is unbelievably beneficial to the body and soul. The website is in its beginning stages, but the more people who join in and share the news with others, the faster it will grow. I joined up and created a profile for Down syndrome care giver. Wanna join?
Check it out here.

Sunday Thoughts

2010-12-05T12:11:00.000-08:00

We arrived at our new church a few minutes late again today, which is just normal for us now, so I might as well accept it and move on. Anyway, got the littles checked into their little class and then the big kids and I went to big church. Steve was at work today.

During the "worship set", there was this new guy we hadn't seen before playing bass guitar. He looked like Cam from the show "Modern Family" and boy, he was really getting with it on his bass. Chloe started mocking him a little (don't worry, we were in the back and it was dark. No one could see us) and I just found it hilarious. We had a good laugh at Cam on bass and really didn't sing at all. Then, during the message or the "talk", which was about making God the center of our lives and not all the things we make idols like sex, drugs and rock n roll, or even good things that we place too much importance on like career and family and material possessions, the pastor mentioned that many of our idols have guitars or footballs or microphones, but none hang from a cross except for Jesus. He's a different kind of idol....well, somewhere in all that seriousness, he mentioned the word trident---I don't even know why. But all I could do after that was start quoting "Anchorman: The Legend of Ron Burgandy" with the kids. We were lost for a few minutes.
"Brick killed a guy with a trident!"
"I saw that! Brick, you should just lay low for a while because you are probably wanted for murder."

Then later, I thought (while still at church and still not listening) why are we even here? I mean, it's no secret that I've been struggling for quite a while with faith stuff, but still feel compelled to attend church. I've talked about how it's about the shared ideals and community and service and and the teaching of the judeo-christian ethic. It's also possibly because in the deep inner recesses of my mind, I still fear that hell is real and that if we don't keep drinking the koolaid, we'll all end up burning in an eternal lake of fire. Or something.

I read somewhere that young people are leaving the church in droves. Barna did some study in the last few years that concluded 70% of kids who have grown up in the church are leaving not only the church but their faith by the age of 22. I thought, what if my own kids sense their mother's lack of total committment to the church and all that it represents, and that in some small way, that leads to them becoming a part of that 70% of kids by the time they reach adulthood. I know I'm giving my own influence too much credit in this imaginary scenario, but still. How would I feel about that?

And the truth is, I just don't know. In some ways, it would be liberating to be able to walk away. In other ways, just too, too scary. It's all I've ever known. And also, despite everything, I think it is helpful in life to always be striving for finding deeper meaning. I enjoy the process of searching for God, whoever he is or whatever that means. I think that it is good to see yourself in the perspective of the bigger picture and a notion of God helps do that. I think I would hate to see my kids walk away from that altogether and conclude that this life is all there is and that there is no greater purpose to it all. Even if there isn't, gosh it helps it get through the tough times to at least cling to a thin shred of a belief that there is.

Literacy Night and Stuff

2010-12-02T19:45:00.000-08:00

Tonight was "Literacy Night" at Jude and Simon's elementary school. I remember going to these things when Jake and Chloe were younger. They are an eensy bit of a snooze, but the kids love them. Basically we show up and get a schedule of what room to go in the school on a rotation for the duration of the program, two painful hours. Each station lasts for about 20 minutes in which we either have theme-related snacks, make crafts, or play games. Tonight's theme was "Whoville" and so all of it was about Grinch stuff. Whatever.

I had planned to take the boys to it when I got the flyer a couple of weeks ago, but then forgot about it until tonight at about 5:40 when Simon ran into the room with his pants all on fire and shouted, "Mom! MOM!!! It's Literacy Night! We HAVE to GOOOOO! It's going to be SOOOO MUCH FUUUUUUNNNNN!!!!!!!"
We were just finishing up dinner and Jude would need at least a new shirt. Dinner can still be a messy proposition for Jude.
"How terrible is it if I just take Simon?" I asked Steve.
"Not terrible at all. Jude and I will clean things up here and hang at home. He doesn't even care about it. You two go."

Eccchhh. Okay. So we started to get on our coats and Jude ran over and got his coat, too. He got little upset when he realized that he wasn't coming. No tears or full-blown tantrums, just a little pucker and some whining.
I directed his attention back toward his daddy and sneaked out to the garage with Simon as stealthily as possible.
I felt terrible about it all the way there. He had every reason to be there just as much as Simon. Steve was right, though. He didn't even know where we were going, he just wanted to go. Once we started rotating through the stations, I realized that it was better that Simon and I were there alone. Jude would've needed so much assistance with the crafts and the games, which required a little bit of reading, that it would've just turned into whole different kind of evening which would've involved me giving a completely lop-sided amount of attention to Jude.

Before we left, Simon made some comment about how Jude is dumb and he doesn't even know anything.
It was just sort of an aside, said under his breath. Not meant as a taunt, just an observation. Still, I knew I had to address it without making it into federal case. "Hey Simon," I said. "Remember that Jude has Down syndrome which means that he learns things more slowly. He can't help that. He's your brother and you love him and you need to be kind. Saying someone is dumb is not kind and I want you always to be kind to everyone."
"Yeah. Okay," he said. And that was that.

Unrelated, but good story: The other day Simon had a friend over who was teasing Jude about playing with dolls.
All sing-songy, "Jude is a girl! Jude is a girl! He likes dolls! Jude is a girl!"
Jude didn't care at all. I don't think he knew he was being made fun of at all. But Simon did. It went on for a few choruses of that when Simon had enough. "No he isn't! He just likes dolls!" The friend stopped his annoying little song and looked at Simon, surprised. "Okay," he said. And that was that.

Oh, and also, tonight at Literacy Night, I ran into someone we hadn't seen in a long time. She asked why Jude wasn't there (Guilt! Shame!) and I said he's just hanging out with Dad tonight. She asked how he is doing at school and I said pretty well. Is he talking, she asked. Well, not much, I said. Oh. Sad, sympathetic face. So I try to keep things upbeat, but I can tell she thinks the whole thing is just so, so tragic.
She reminds me of a conversation we had shortly after the twins were born in which apparently I told her that I hoped Jude would be a superstar or something because he had good genes, a full-time typical peer in his twin brother Simon and a mom who is a teacher!

Did I really say all that stuff? I probably did. I'm totally embarrassed by it now, though. There's this thing that I semi remember feeling after getting Jude's diagnosis that, well, we may have a kid with Down syndrome, but he's going to be the VERY BEST kid with Down syndrome who EVER LIVED! He will break all the stereotypes and shock everyone with his achievements! I wish I could talk to that mom of nearly six years ago, so shell shocked at being thrown headlong, completely unprepared into Disability World and help her realize that she probably should just, um, stop talking. I must have been just reaching for any way to try and soften the blow or make it seem more hopeful or, gosh. I don't even know what I was trying to do. I wish I'd have just kept my mouth a little more closed. That would've been better.

Down syndrome affects people differently. On the spectrum of things, I know we could have more problems than we have had to this point. Health-wise, we've been very fortunate. I also know that there are kids Jude's age who are talking up a blue streak and reading.
As if you can possibly predict such a thing as Down syndrome superstardom at birth. As if it matters. It is what it is. And I still say the jury is way out on what it is.

Thankful

2010-11-28T17:28:00.000-08:00

This Thanksgiving weekend, I have had an epiphany. Every time I've felt those familiar pangs of desperation,
I've combated them with a few pithy and highly useful slogans that seem, so far this holiday season, to be keeping the blues at bay.

While shopping the other day, I saw some holiday stationary similar to what I used to send the letter along with Simon and Jude's birth announcement explaining his diagnosis of Down syndrome. We wanted people to hear it from us first, and we wanted to put our own spin on it. In reality, we were reeling with fear a whole mixed bag of swirly-twirly emotions, but we wanted to set a positive tone. We sure didn't want people coming up to us after the birth of our beautiful babies and tell us they were "sorry".
That was a hard letter to write. We agonized over it. Seeing that stationary took me right back to that place of uncertainty nearly six years ago. I could almost smell the hand sanitizer of the hospital NICU and hear the shrill beeping of the apnea moniter that sounded every time Jude had another episode of bradycardia.
Standing there in the Target, staring at the package of stationary with glazed eyes and a pounding heart, I said to myself:
"You were so lucky to be surrounded by supportive friends and family during that time."
or something simple and postive like that.

On Thanksgiving when Jude drew some attention to himself by filling grandma's toilet to the rim with toilet paper and my cousin-in-law was nice enough to fish it out as there was simply no way it was going down but then found that there were little Jude turds beneath it all...
instead of focusing on the near plugging of the plumbing and the embarrassment of seeing Dwight dragging soiled tp out with his bare hands (ew!), I said to myself:
"Jude went to the bathroom all by himself! I am not changing a dirty pull-up right now. He is really making progress."

I'm not trying to turn into a pollyanna. I mean, have you met me? That's just NOT happening. I'm just trying to stave off the dark, dark darkness that crept in last year at about this time and lingered until late spring and that, in fact, nothing but pharma could help. I could probably really benefit from therapy, but I'm way too cheap so I just write on this blog and talk to myself. Don't judge: it's working so far!

Here's a few more examples:
I get up in the morning and look at myself in the mirror. I see more of me than I want to. I look old.
I say:
"You have a healthy body that works the way it's supposed to. You have two arms and legs, hands and feet that are going to take you to all the places you need to go today and accomplish all you need to do. You are so fortunate to have lived long enough to see age in your face. Here's to 41 more!"

I feel worried about something trivial and I let it spin out of all proportion in my mind.
I stop myself short and say: "Don't sweat the small stuff. It's not ALL small stuff, but this is. Let it go."

The holidays are an especially hard time for missing loved ones who are no longer with us. As always I try to remember that the pain I feel in missing Seth is proportionate to the amount of love I had for him while he was here. I was so lucky to have him in my life and to have loved him so very much.

I feel sad, then begin to beat myself up for feeling sad when there are so many in the world who are enduring true suffering at this very moment.
I stop in my tracks and offer a silent prayer for all in the world who are hungry, who are grieving, who are sick, and who have no home. First World problems here, for sure.

Anyway, there's no magic of course, but so far it's helped me navigate Thanksgiving and a weekend of shopping and Christmas in my face without despair, so I'm going to keep practicing it.

This Thanksgiving, I am thankful for this simple discovery.

Surrender

2010-11-22T12:14:00.000-08:00

Alright, already. I am officially waving the white flag. I will practice PECS at home with Jude.

I have been resisting it, I admit. Because what I want is not a child who can communicate using pictures, but a child who can communicate using words. I'm like a spoiled little brat who is staging a small, silent protest against this unwanted intruder into our home, this PECS notebook. I haven't wanted to face the fact that Jude can't communicate well by any means at the moment: speech, sign language, or pictures. On the verge of his sixth birthday, he can do each...poorly.

The idea with the PECS is that it is a stepping stone either to speech or to a more involved communication device later on down the road. Jude's speech therapist at school said to me this morning that she doesn't believe speech is ever going to be Jude's avenue of communication.

Ouch.

Based on what, I am not sure. I don't know how one could possibly know that at his age. Are any of the rest of us at age 6 what we are to be for the rest of our lives? However, she does have a point in that it is not good for now, and that we can't ignore that. We need to be offering him alternatives. It's not good enough for him to only practice PECS once a week for 45 minutes at therapy. We have to be consistent with him at home on this or it's destined to fail for sure.

I am going to have to get my head out of my ass, I mean the sand and start doing what needs to be done around here. It hurts to accept the truth, but Jude isn't going to just start magically being conversational tomorrow just because I want it so much.

Will & Kate

2010-11-17T04:33:00.000-08:00

Congratulations to the happy couple! I am so very thrilled to hear of the upcoming wedding of Prince William and his beautiful fiance Kate Middleton. Really!

But now can we move on? Do we on this side of the pond have to hear about it ad nauseum for the next however many months until the blessed event? I just don't get the fascination with the royal family. Do they even do anything? Last night it was all over the news and this morning, I turn on Today and for the first 15 minutes of the show they are going on and on about it again with no end in sight. * Sigh *. I'm sick of it already and we're just getting started. Is there no real news to report that we need to hear a detailed account of this young couple's nine year courtship? Is it any of our business? Do we need to hear about the financial portfolio of Kate's father?

Enough already! It's all very exciting and lovely! Truly! Now, on to something else! Please!

Oh, oh, wait. Whew! They've moved on to another "news" story: a Dancing with the Stars update. Thank goodness!

A Good Team

2010-11-14T18:36:00.000-08:00

So we've been thinking and talking a lot lately around here about Jude's speech, or lack thereof. We've been considering the small baby steps of progress that we've made over the last few years, whether or not speech therapy actually has had much to do with any of it, and where we hope to be a year, five years, and 10 years from now.

I was doing Jude's homework with him earlier, which consisted of reading a book called "I like This and That" to me 3 times. Simon had the same homework. Simon could read the book backwards and forwards. Jude can't read any of it, though he was able to finish a few of the sentences by looking at the pictures, which is a good pre-reading skill. Even though he wasn't technically reading the book, I had him point to each word and repeat each word after me just to practice saying the words, which are all "word wall" words this year for the kindergarteners. He was more than happy to do this over and over. I just think he likes the attention and the snuggling involved with reading together.

Articulation on the words was, well, horrible. No, I mean really, really bad. It was something like this...

Page 1
Me: I
Jude: I
Me: like
Jude: ii
Me: hamburgers
Jude: auaugh
Me: and
Jude: aa
Me: hotdogs
Jude: agh agh

Page 2
Me: I
Jude: I
Me: like
Jude: ii
Me: apples
Jude: babble
Me: and
Jude: aa
Me: oranges
Jude: agh agh

You get the idea. Often there are identifiable vowel sounds. Sometimes there are the right number of syllables. That's about it.
I have a friend with a boy with Down syndrome who is about a year or even 2 younger than Jude. He is conversational and reading. I know I shouldn't compare, but it's hard not to. Maybe Jude is way cuter.
And speaking of cuteness, Jude's therapist at the hospital gets mad at him for trying to play on his cuteness during sessions when he can't or doesn't want to work. She said, "He can't just get by on being cute his whole life!" I thought though, can't he? He's been doing it for a long time. He's really good at it. Plus, some people get by for a whole lifetime on little more than cute. Look at Tom Cruise. (I'm just kidding, Tom. I really liked you in Minority Report.)

To get to the point of this post, tonight while we were cleaning up the kitchen, I was talking to Steve about how I sometimes depair at how bad Jude's speech still really is. Very little stringing together of words. Almost completely unintelligible about 95% of the time, even to his own family. Steve said, "Really?" all shocked. "I don't worry about it at all. He's saying so much more than he was a year ago, and he's always trying to say even more. He'll get there! He's just little! Besides, what's the worst that can happen? If he isn't ever really able to communicate well verbally, we'll find another way. It'll be fine. .Really."

You see? He has just the right amount of laid back and optimistic to round out my crazy and fatalistic.
We make a good team.

Cap & Gown

2010-11-13T13:38:00.000-08:00

Jake just brought home his order form for his cap and gown for graduation in May. Seems early.
Anyway, it came as a bit of a shock for those of us (read: me) who are in a bit of denial about this particular upcoming rite of passage. I guess this is happening.

Therapy Schmerapy

2010-11-10T19:38:00.000-08:00

Jude receives speech therapy at school several times a week for about 20 minutes or so each time. I've seen it. It's nothing magic, and in fact I often wonder if he's not missing more in the classroom than he's gaining by having speech.
We also travel 30 minutes once a week to the hospital to have 45 minutes of outpatient private speech therapy and then 30 minutes back home. There's no magic happening there either. In fact, his therapist is so laser-focused on the PECS now that she rarely even notices when he uses actual speech during his sessions with her.
I'm all, "Hello? He just TALKED to you. Using WORDS. Isn't that the goal of SPEECH therapy?" She's also quite impatient with him. He gets frustrated and digs in his heels even more and does bad things like throwing stuff at her. Then he wastes valuable time on the speech therapy clock sitting with his nose in the corner in time-out.
I just don't know about it sometimes. It's all very frustrating. So much of the learning our other children have done has been incidental. They just picked it up as if by osmosis. Will Jude do that too eventually? I mean, will all the therapy in the world really change the eventual outcome of what Jude will accomplish speech-wise?
Have there been studies on this? I know that the children back in the dark ages with Down syndrome who were abandoned by their families and left to sit alone in institutions where no one held them or sang to them or interacted with them did not fare well academically or otherwise. No surprise there.
But what about the kids of today who live in active, loving homes and stimulating environments surrounded by speech? Is it really the speech therapy that is improving their outcomes or is it all the other stuff?

Steve wants to take a break from speech this summer. We watch how it frustrates Jude and us too, and he thinks a break might do us all some good and summer would be a natural time to do such a thing.
I am already experiencing anticipatory guilt over that upcoming decision. I suspect that he is right about all of it and that in the long run of things it won't make one tiny bit of difference for Jude, but isn't weekly speech therapy just what you do in this situation?
Shouldn't I also be sitting with Jude for long stretches of time each day sorting colors and practicing letters and mastering all the things that he is so delayed in learning? Yes, probably.

There it is, exactly: that's the thing that is hard about special needs parenting for me. I just want to be Jude's mom. I want to just play games and watch him play outdoors and read to him and take him to the zoo and the circus and to Megamind and eat popcorn and just enjoy him. I don't want to therapize him. I've never been good at that stuff with any of our kids. I'm just not a flashcards kind of mom. And yet all of them are great readers and students. But I'm told Jude just won't pick up on this stuff by accident. It will all have to be hard won and there just aren't enough hours in the school day or the therapy room to get it all done. Much of it is up to us. I'm so not cut out for that. I don't like playing that role with the kids. (How in the world did I ever end up in teaching anyway? )
If he never speaks well, will it be because I didn't do enough?
Oh, the pressure. Oh, the guilt.

Edited to add the following disclaimer: The next day, in reading back over this, I can imagine being a speech language pathologist and reading this and feeling as though I am calling the efficacy of the entire profession into question. I'm really not. I know that SLP's have some tricks up their sleeves that the rest of us are not privy to. I also believe that sometimes our children will work harder for others than they will for us.
My above rant is just a reaction to what we've watched transpire in one specific case over the last five, almost six years.

In the News

2010-11-05T04:19:00.000-07:00

Many of Haiti's residents are already living in tent cities, dealing with a massive cholera outbreak, and now they are being evacuated due to a Level Holy Shit storm headed their way. Well, that's all they need.
This kind of human suffering is the very sort of thing that makes me wonder about the following four options:
God doesn't exist
God is disengaged with the events of this world
God is a bully
God isn't what we've made him out to be

And yes, I am aware that I am completely bi-polar on this topic. Thanks for your concern.
The only option that I don't consider is the God's Master Plan notion. You know, the one where he is weaving a beautiful tapestry that only he can see, but from the underside it just looks like ugly yarns hanging down and we just don't see how it all fits together. Ughhhh. I've been told that one before and it's just too hard to swallow in the face of aforementioned Level Holy Shit suffering.

That is all.

Church Stuff

2010-11-01T20:53:00.000-07:00

We are church whores these days, visiting a new one each Sunday and usually with not so much as a glace back over our shoulders as we bolt from the sanctuary after service before having to make eye contact with anyone or get asked for our contact information.

This past Sunday was different. We even gave our phone number to this one and are hoping it calls back for a 2nd date. It was attractive, though quite a bit older that what we're used to. It was open and affirming, welcoming, and it had a place for everyone. It concentrates on Jesus's message of love. It says, "No matter who you are, or where you are on life's journey, you are welcome here." It says, "God is still speaking," and it plans interfaith Thanksgiving programs with Jewish and Muslim congregations in the city. In short, it is open rather than closed. Open to people, open to ideas.

When talking about our son who has Down syndrome, some people say, "God gives special children to special parents." I don't think that's true though, because I'm pretty sure that some of those special children get stuck with really awful, neglectful parents who abuse them and eventually steal their disability money to support their meth habit. I believe in God and I totally love Jesus. But I don't believe everything the bible says about a God who kills almost everyone on the planet by flood or who burns his people in a lake of fire for all of eternity because they didn't believe quite the right things or especially a God who tortures a man to the brink of his faith over a bet. These heretical thoughts of mine make me an unwelcome guest at some churches and dinner parties. But not this church. This one seems like a safe place to think and talk about such things while still hanging on to all the things I love about church: the community, the shared ideals, the values of family and service and the kick-ass pitch-in dinners. I love being part of a church and it's no fun being church homeless right now.

I don't know if this is the one for us or not. It's located in the land of Far, Far Away. But it was a breath of fresh air. It gave me hope to keep searching and reminded me of why we would even want to.

Once You've Seen the Rabbit, You Can't Unsee It

2010-10-28T09:51:00.000-07:00

Rabbit, Duck or Both? Click here.

Retard Rocket

2010-10-25T07:58:00.000-07:00

This is what my unwitting neighbor called the special needs bus this morning. I saw her out walking so I slowed down in my car, put down the window and chit-chatted for a few moments.

How did it come up? She was asking me if I drive the kids to school. I explained to her briefly about our dilemma with the bus this year...about how we were unsure if Jude was ready for the regular bus, but that we didn't want to make Simon ride the special needs bus nor did we think it necessary for 2 buses to come by the house when I am available and happy to drive them. She had this glazed look. I do talk fast, so she missed something in there and started laughing about how the kids call the white buses the "retard rockets". I did not share in her laughter, but instead mentioned that "short bus" seems nice compared to that.

Then she said, "Why would anyone at your house ride the white bus anyway?" I told her that one of the twins, Jude, has Down syndrome. I really thought she knew that.

"Oh."

Man, I know she felt terrible. I did, too.

Sigh.

The whole thing could've been avoided had I simply answered, "Yes, I drive the kids to school." Why did I feel the need to elaborate on all of that? She didn't want to hear all that. We barely know each other, obviously. First of all, when I say "neighbor", I mean country neighbor. This means two things: 1.) we don't live that close, like maybe a mile apart and 2. ) country neighbors (not always, but often) are standoffish. They are there to help if you need it, but they live in the country for a reason. They don't want to be neighborly. Like I said, there are exceptions to this, but not many.

There's a movie quote from "Signs" from the scene where M. Night Shyamalan makes a cameo appearance. It's in the guard shack and he is playing one of the guards. They are being paid to help keep a secret about the community of people who live within the walls they guard. He advises the other guard, "Try not to get involved in conversations." Steve and I quote that to each other all the time, say, after we've just had an altercation with one of our mouthy teenagers.
I was thinking about it this morning, too, after my talk with the retard rocket lady.

edited to add: Oops! The movie is "The Village", not "Signs". Not really important to the meaning of this post, but there it is.

The Accidental Tourist

2010-10-23T15:13:00.000-07:00

!988. William Hurt, Kathleen Turner, Geena Davis, Cardigan Welsh Corgi named "Edward". Remember it?
I saw it once. It's kind of a cold, rainy day today...the kind of day it's good to sit inside and watch movies, and I just watched this one again and was crying by the end.
Just beautiful. How did I not see that the first time?
Probably because the first time I saw it I was neither a parent, nor a bereaved parent.

31 for 21: Phhhlt!

2010-10-23T14:38:00.000-07:00

You see? I should commit to things less often. Because when I commit and then I fail, I feel so very guilty. Whereas, if I don't commit, I accomplish nothing.
And feel great about it!

Anyway, I will continue to do my lackluster best to bring you my awesome pearls of wisdom (or something) here at Not That You Asked for the rest of this Down syndrome awareness month.

What's with all this awareness anyway? Are there people who are not aware of Down syndrome? Is there a person alive who's never heard of it? I suppose there might be a lot of people who don't know exactly what causes Down syndrome, so here's a little awareness coming'right at ya:

Down Syndrome Fact Sheet

• Down syndrome occurs when an individual has three, rather than two, copies of the 21st chromosome.
This additional genetic material alters the course of development and causes the characteristics associated
with Down syndrome.

• Down syndrome is the most commonly occurring chromosomal condition. One in every 733 babies is
born with Down syndrome.

• There are more than 400,000 people living with Down syndrome in the United States.

• Down syndrome occurs in people of all races and economic levels.

• The incidence of births of children with Down syndrome increases with the age of the mother. But due to
higher fertility rates in younger women, 80% of children with Down syndrome are born to women under 35
years of age.

• People with Down syndrome have an increased risk for certain medical conditions such as congenital heart
defects, respiratory and hearing problems, Alzheimer's disease, childhood leukemia, and thyroid conditions.
Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives.

• A few of the common physical traits of Down syndrome are low muscle tone, small stature, an upward
slant to the eyes, and a single deep crease across the center of the palm. Every person with Down syndrome
is a unique individual and may possess these characteristics to different degrees or not at all.

• Life expectancy for people with Down syndrome has increased dramatically in recent decades - from 25
in 1983 to 60 today.

• People with Down syndrome attend school, work, participate in decisions that affect them, and contribute
to society in many wonderful ways.

• All people with Down syndrome experience cognitive delays, but the effect is usually mild to moderate and
is not indicative of the many strengths and talents that each individual possesses.

• Quality educational programs, a stimulating home environment, good health care, and positive support
from family, friends and the community enable people with Down syndrome to develop their full potential
and lead fulfilling lives.

• Researchers are making great strides in identifying the genes on Chromosome 21 that cause the
characteristics of Down syndrome. Many feel strongly that it will be possible to improve, correct or
prevent many of the problems associated with Down syndrome in the future.

he has a different number of chromosomes than the rest of us is an utterly insignificant detail, barely even worth mentioning. And that is absolutely true almost all of the time, too. Every once in a while, though, there is that familiar ache. If I let myself imagine what our lives (ours and his) would have been like if during his formation that twenty-first chromosome wouldn't have tripled, it does sting a little. I imagine things like Simon and Jude lying in their beds at night giggling about a joke that Jude just told. Or I think about the two of them having a single shared secret or studying together for their driving test at the BMV when they both turn 16 or about double dates or about Simon holding Jude's first child. Most of these things just won't happen and I'd be lying to say it's nothing.

I could tie this post up with a happy ending about all the things that are great about Down syndrome, but what would those be? Is there a post out there about all the great things about diabetes or autism or Crohn's Disease? Doubtful. My bottom line: Let's be aware of Down syndrome, sure. Let's be aware of the many things we can do to make sure that people with Down syndrome are included and treated with the dignity that they deserve as members of the human race. Let's be aware of Ds. We don't need to celebrate it.
If Down syndrome had a facebook fan page, I probably wouldn't join it. But if Jude had a fan page...you bet!
That's the thing about it. That's the thing about every person, isn't it? We all come with a collection of
indiosyncricies and outright flaws, but we learn to love and treasure each other in spite of them. Down syndrome is a mistake. It is a genetic accident, and it effs with just about every system in Jude's entire body and mind. To be perfectly honest, I kind of hate it. But I love him. Love him, love him, love him.

31 for 21: Oh, Whatever!

2010-10-21T06:28:00.000-07:00

I have failed so spectacularly at this 31 for 21 thing. I hang my head in shame and write a long catch-up post today and ask for your forgiveness, dear blog reader.

Yesterday we made our yearly trek down to the "big city" to the Down Syndrome Clinic. This is where we go to the Children's Hospital, get put in a room, and have a parade of specialists come through the room to visit us. When Jude was younger, this was a long ordeal. We saw a orthotist, several different therapists who each wanted Jude to jump through their respective hoops, an ENT doctor, a dietician, an endocrinologist, and finally the developmental pediatrician. Add cardiologist to that if Jude had any heart defects, but we luckily dodged that particular bullet. Now that Jude is five and has been remarkably healthy, he yesterday only saw the endocrinologist and the developmental pediatrician. In and out! It was nice. We will begin a two month trial off of Jude's thyroid medication (synthroid) to see if he still needs it. Also, the ped thought Jude looked great. We talked about the speech defecit some, and he just shrugged his shoulders. "Yeah, that's kind of a thing with these kids," he seemed to be saying. He felt that the fact that Jude has a few words already bodes well for his obtaining more in time once he is sufficiently motivated to work harder in that area. In all, he interacted with Jude for a while, asked him some questions, gave him some simple tasks to do and was impressed with how engaged he was and how responsive. So, it was nice to hear good things.

Last night I dreamed that Steve and I decided to have more children, had twins again and BOTH had Down syndrome. I cried. Hard-core. Of course I love Jude like crazycakes, but the truth is, it IS harder. It just is. Every bit of learning takes longer and is hard won. Communication is a challenge. Worry is a son-of-a-bitch constant companion. And, unlike with our typical kids, the role of parenting will never really end. It was an intense dream. However, in the positive column, it's true that each little achievement is like a freaking mardi gras! The other night as I was getting the boys ready for bed, Jude slipped away out of the bedroom and I was like, "Gosh Dangit, Jude! Get back in here!" I started down the hall to find him, glanced over in the bathroom and found him on the toilet (he had perched himself up there! I'm not sure you understand how short he is!) and was, all on his own, going, um...poo! Now, for Simon this is old news. For Jude, this was a holy and sacred moment that had me in tears and clapping and dancing around like a crazed circus monkey.

Yesterday at the Clinic, a volunteer ushered us to our room and chatted us up while we were waiting for our first doctor to come by. Her name was Katie, and she had Down syndrome. I would guess her to be about 30. Cute as a button. Very smart and independent and a good chatter! Simon was fascinated with her. As we were leaving, she was waiting for her bus outside and Simon asked why she didn't have her own car. I said, Katie probably doesn't drive (though I know some with Ds do). I said, "Simon, Katie has Down syndrome, like Jude!" His eyes became huge and he said, "But she's a grown-up!"
me: "Down syndrome isn't something you grow out of. She's always had it, and Jude will always have it."
Sy: "Jude won't grow out of Down syndrome?" (More disbelief and shock)
me: "No, he'll not grow out of it."
Sy: "Oh."

He looked a little disappointed about it, but not devastated. I think he continues to think that with enough dr. appointments and therapy, Jude will just snap out of it, already. And yet, they play together so well. Better maybe than they would have if they were both typical. Anyway, it is what it is. And it's pretty good.

In Which She Raves about the Brazilian Blowout

2010-10-14T19:27:00.000-07:00

Heard of it?
Click here for a link: Brazilian Blowout

My stylist chose me (love her!) as a guinea pig to try out this new hair treatment, and I must say: LOVE IT!

Are you like me? Does the volume and sheer mass of your hair make you want to cry on a daily basis? Have you seriously considered shaving your head on more than one occasion? Has anyone ever tried to snip a tuft of your hair with intent to fashion a tool with which to scour their sink and bathtub? Has the sight of your untamed locks on a humid day frightened young children? You might want to consider the Brazilian Blowout.

Behold the before and after:

Jude and School

2010-10-14T14:10:00.000-07:00

Things seem to be going well at school. We have another meeting of the IEP committee at the end of this month to revisit the topic of Jude's placement. We will be shocked if they say anything other than that things are going great because this is all they're ever telling us when we ask. I've been in the school laminating and copying stuff for the teachers (general ed and resource)and poking my nose in the rooms to see what's up, I've been on a field trip, and I've asked for email updates on a number of occasions, and in all of that, Jude seemed to be doing well. Also, other teachers and aides voluntarily tell me about how much progress Jude has made since the beginning of the year in their classes. The gym teacher has been especially complimentary, gushing even.

Jude's resource teacher sent home a book with us today that she claims Jude was reading to her today at school. I've been trying to get him to repeat the performance for me at home and so far, been getting blank stares. I don't doubt that he can do it, though. He does the same thing to me sometimes with Steve. He'll say or do something amazing, and then when I try to get him to do it again, he goes all slack jawed and starts drooling. I have a theory that he's messing with our heads when he does stuff like that, having a good laugh at our expense later about how he can turn it on and off at will like that. Little stinker.

Did I mention how much I love my Kindle?

2010-10-14T13:58:00.000-07:00

Steve got me a Kindle for Christmas last year, and I am in love with it. If we were polygamists, I would want the Kindle to be our sister wife.
I love that I can just be interested in something, pick up my Kindle and do a quick search and within 60 seconds, I can have a whole book in my hands to read about it.
60 seconds! Oh, and I can do this in my jammies.

LOVE.

So here are some of my latest reads provided to me efficiently and perfectly on my beloved Kindle:

Evolving in Monkey Town by Rachel Held Evans
Saving Jesus from the Church by Robin R. Meyers
A New Christianity for a New World by John Shelby Spong

Also, I started Room of Marvels by James Bryan Smith, but couldn't finish it. It reminded me of The Shack a little bit too much, except even more dripping with sentimental goo and I said to myself, "Life is too short to finish books that you aren't enjoying," so I shut off my Kindle, tenderly kissed it goodnight, and rolled over and went to sleep.

I liked the others very much. I am finding ways to hang onto the parts of Christianity that I love, and throwing out the parts I don't love as much.
It feels great.

Trying Something New Today

2010-10-10T05:32:00.000-07:00

I know I'm not doing a very good job with this 31 for 21 challenge. Mine will end up being more like 21 for 21 probably. Don't judge me.

Today the kids and I (Steve's working) are going to try a different church. Really different. We'd been going to the same conservative Christian church for years, and left it recently (in part) because they have changed locations and it is now over a half hour drive.
For the last month, we've been visiting a church in town. It involves about a seven minute drive. It reminds me of every church I've either grown up in or attended since I've been an adult.

I have a friend who is training to become an Episcopalian priest and I've been curious about the church for a while now. I've heard "All the pageantry, none of the guilt," said about the Episcopals, but I'm off to see it for myself today.
I think I might like the pageantry part. I could do with a little more awe and reverence and little less of sitting in God's living room.

The drive today? Probably around 40 minutes. My decisions make no sense whatsoever.

31 for 21: I Suck at Blogging Everyday

2010-10-07T19:01:00.000-07:00

Missed another day, but I'm back!

Jude was a huge bucket 'o snot yesterday and then last night, he came into our room at about 1:30AM barking like a seal. He was in real trouble. We tried all the usual stuff like turning on the hot water and having him breath in the steam...to no avail. Then we tried the cool night air. Nope. He just wasn't turning it around and it was getting scary, ya'll. So Steve took him into the ER for a shot of steroids and a breathing treatment. He was so, so much better today, but we were all exhausted. Jake, Chloe, and Simon all went to school while Steve, Jude, and I stayed at home in our jammies all day taking naps off and on.

I wonder if kids with Down syndrome have more trouble when they have croup because of the floppy airways situation. I don't know the answer to that. We've dealt with croup around here before, but have never had to go to the ER because of it.
Anyway, I didn't care for it. Two thumbs way down. But two thumbs way up for the improvement today. He's a resilient little guy.

Birth Story/Today

2010-10-05T18:54:00.000-07:00

I have probably written about this in bits and pieces here before, but for those of you joining this program already in progress...

Jude and Simon, fraternal twin boys, were born on December 20, 2004, very nearly Christmas babies. In fact, the nursery staff delivered Simon to me from the nursery for the first time in a red and white Christmas stocking. At 5 lbs, 10 oz, he was almost swallowed up by it.

In the delivery room, which was an operating room since the boys were delivered via c-section, Simon emerged first and everyone gasped and expressed relief at how good and how "big" he looked for being nearly a month early. There was a happy, lighthearted feeling in the room. Steve and I were thrilled to finally be arriving at this long-awaited day, anxious to get the surgery behind us, wanting desperately to meet both boys, get all my innards stitched back in, and get on with life. "He looks great!" Steve said as I rolled over and puked...anesthesia and I don't get along that well. Next, Jude was born and everyone in the room became quiet. No one said he looked good. No one said anything. I don't remember if I heard him cry or not.
Just minutes later while I lie shaking and fighting nausea in the recovery room, having not even seen either of the babies yet, Steve and the neonatologist flanked my bedside. Steve took my hand while the doctor uttered just a few short matter-of-fact sentences about some things he had observed in Jude that had caused some concern. First, he was not breathing well on his own and had been placed on oxygen. He also had some physical markers that were consistent with a diagnosis of Down syndrome. He was going to check on both babies and he'd get back with us soon.
After he left the room, Steve collapsed onto the end of my bed and cried. Meanwhile, I was numb. Anesthesia? Shock? Disbelief? I don't know. I just remember not really registering that information immediately. I was just glad that all three of us had survived the delivery. One of my worst fears going in was that something would go wrong and that I'd die leaving Steve to raise four children by himself.
I think in that moment, despite the probability of Jude's diagnosis, I just felt relieved that we were all alive.

Later that day after getting Simon-in-a-stocking, my entire bed was wheeled down to the NICU so that I could meet Jude for the first time, or so I'm told. Weirdly, I don't remember a single bit of that. Most of that day is a blur. The following days, I was walking my own post-surgery self down the long corridors of the hospital to visit Jude. Weighing in at just 3 lbs. and 14 oz., I'd never seen such a tiny baby up close and personal. He looked like a bird. Preemie diapers were ridiculously huge on him and all the preemie clothes had to be rolled up several times on the arms and legs to expose his fingers and toes. 10 of each, by the way, but two of them on the left hand were fused. Huh. It was a birth defect, one which on any of our other babies probably would've had me a little bummed out.
In light of a chromosomal anomoly, though, a coupla webbed fingers is child's play, a blip on the radar.

Simon, Steve, and I were able to go home on the 4th day, the same day the karyotype came back confirming for certain that Jude had Trisomy 21. Jude had to remain in the hospital for two more weeks until he was strong enough to remove the feeding tube and eat on his own. The first 4 days, we'd been studying his tiny features, telling ourselves that we didn't see the telltale signs. We already knew it, though. It was all right there in his eyes. Those same eyes that looked up at me while I rocked him and fed him, the eyes that are exactly the same beautiful color of hazel as his big sister's. He wasn't a baby with Down syndrome, he was just a baby. Our baby, who needed us to rise above our own fears, reach into ourselves like never before and focus on the possibilities of a life we might never have chosen for ourselves but that would be so full of unconditional love that we'd never look back and wish it were any other way.

Just today, nearly six years later, Simon told me he didn't like having a brother who doesn't talk, totally out of the blue. I asked him if someone had said that to him at school. He said yes, a boy named Colton had asked him if he liked having a brother who doesn't talk and he thought about it for the first time and decided that no, he didn't.
I knew it would happen eventually. We've talked about Down syndrome and about the fact that Jude would learn things more slowly and it's just been a non-issue for Simon until today...until someone else pointed out that it was different. I told Simon it's okay not to like it. I don't like it sometimes, too. I told him that it's okay to wish things were different sometimes. I had hoped we wouldn't ever wish that, but the reality of life in Disability World is that sometimes it's not all rainbows and unicorns. It's okay to feel that and say that and not be made to feel like a bad person because of it. But, I said, after we say that and we all agree that it's true, we try not to think about it for long because we're too busy with loving each other and helping each other and accepting each other as we are. Too much for an almost six year old? Well, I do the best I can flying by the seat of my pants. I'm just making this up as I go along.

31 for 21: Day 4

2010-10-04T08:09:00.000-07:00

I nissed day 3. It only took ne 3 days to fail! I can't believe it. But, I've picked nyself back up and I'n ready to try again.

The new keyboard is supposed to cone today and I can't wait. For those of you who will niss the nadness, I'n afraid you'll have to seek your entertainnent elsewhere.

In other failing news, we nissed the Buddy Walk again this year, 2nd year in a row.
At first, I thought we'd not be going because Jake had tennis sectionals that norning, but they got rained out. The Buddy Walk goes rain or shine, so we could've gone anyway. But really, it was like 40 degrees or sonething and raining. AND Steve was working, so I'd have been nanaging on ny own. I just couldn't nuster the will to do it. Next year?
There's always next year.

Watched SNL over the weekend. Second week of the new season. Bryan Cranston was the host, you know the dad fron Nalcoln in the Niddle and nore recently, Breaking Bad. It wasn't that funny. A few chuckles, but nothing that nenorable. Cranston and Fred Arnison did a sketch where they were brothers who had been a one-hit wonder and returned to their hone town to do a concert and only about 20-30 people showed up at the venue and it was pathetic. The song had only the following lyrics: "I sent a bottle of sparkling apple juice to your house...did you get it?" Over and over. And now? I can't get that freaking song out of ny head! I an ready to go insane with that apple juice song!
That happens to you sonetines too, right? Right!?

I also watched Hone Nakeover, which I don't usually watch, but this week it was about a fanily who had adopted 6 kids with Down syndrone. They were living in a cranped trailor, so they were definitely good candidates for a nakeover. I didn't see the whole show, so I an nissing a few details of how this fanily cane to be. Their sister seened to be taking care of all of then, and they all looked pretty nuch grown up. I couldn't tell if the sister was narried, but I think not because when she got to see her naster bedroon, it was just "hers" and not "theirs" or "ours". Also, the parents who had adopted all these kids were dead, but the sister didn't look all that old--nid 40's naybe? So I don't know the deal. But anyway, one pressing question I have in reaction to the show concerns the fact that Ty Penington kept saying over and over that he had to bring the outside world inside to these kids because they don't have the chance to get out nuch. Nost of the their lives, he said, will be spent inside this house.
Why? Did I niss sonething? Are they not allowed to venture out? Do they not have jobs? Friends? Bowling leagues? Anything to carry then outside the walls of the house? None of then looked physically disabled (and so what if they were? Those folks get out too!), so I just didn't get that he kept saying that. It was like a thene for the whole redesign of the house. They live in NYC, so the inside of the house was nade to look like a brownstone, each of the kids with their own doorbell and nailbox outside the door and with the back end of a NYC yellow cab hollowed out as their couch in the great roon. It was cool and all, but I didn't get how they had to bring NYC to then since they couldn't go to it. Uh...why not, Ty?

See you tonorrow for Day 5! Unless I fail again, in which case, I'll see you on Day 6! Or 7!

Day Two

2010-10-02T08:55:00.000-07:00

I've just spent a huge chunk of tine this norning watching videos fron the "It Gets Better" project on youtube. This project was started by advice colunnist Dan Savage in response to the shocking and tragic nunber of teenage suicides recently due to bullying. I an
HEART.
BROKEN.

What lurks within us as hunan beings (I know it's hard to take ne seriously with this keyboard problen, but try) that we feel the need to tear others down because of their differences? So these teens were gay?
So what?

That is just a part of who they are. Who knows what contributions they would have gone on to nake in their lives had they not succunbed to believing that they were not worthy to live or they couldn't tolerate one nore day of the nane-calling and the taunting and the slurs.

It's tine for people to WAKE UP and stop hating.
Fag. (Retard!) These are words that need to go the way of the dinosaur. Every person on earth has value. Every person, regardless of gender, sexual orientation, religion, race, intellectual ability, height, favorite color or any other difference you can conjure, is significant and worthy of life and love.

Day One

2010-10-01T20:47:00.000-07:00

So I took this 31 for 21 challenge to blog everyday, and on the very first day, I have about 40 ninutes left to get one in just under the wire. I predict failure and that right soon.

I'n still nissing a letter on ny keyboard, clearly. When Sy and Jude were younger, they used to pick keys off the laptop and do who knows what with then. I don't recall seeing any keys in their diapers, but I bet a few night have been flushed down the toilet or buried deep within the couch cushions. Steve did a little research (watched a Youtube video) about how to replace a keyboard on a laptop. It's inexpensive and easy! So he ordered a new one for ne which will arrive on Nonday and then you and I have a collective sigh of relief about the whole thing. I've handled it all pretty well, taken it in stride. But you? You've just practically cone unglued over this. I nean, really. Pull yourself together! It's enbarrassing.

Yesterday I had the opportunity to chaperone a school field trip with Jude's class. It had to do with teaching the kids pedestrian safety and was fine, whatever. Local police run the progran. The neat thing was just seeing Jude fall right into line with the rest of his class and seeing hin being included in the nornal flow of the kindergarten routine. He did pretty well. We had a couple of nonents when I had to reign hin back in, but nostly, he did great. So proud of hin.

Today while the kids were all at school, Steve and I planted 8 trees. Eight! They are all crabapples which we staggered down our long driveway. Half are prairiefire and the other half are sugar tyne. I can't wait to see then all in bloon in the spring. I recently joined the Arbor Day Foundation and will soon be receiving 10 nore snall trees that I will plant. I love it. When we were at the nursery picking these out, I told Steve that I thought I had nissed ny calling. I would love to work in a nursery. Naybe soneday I will. I have this teeny tiny fantasy about Jude and I having a landscaping business together soneday.

Speaking of nissing ny calling, I watched the new show Teach: Tony Danza on A&E tonight. Tony Danza originally graduated fron college with the intention of teaching, but got into boxing and then tv and just never got around to it, until now. The caneras are following as Nr. Danza attenpts to teach a 10th grade English class in an urban Philadelphia high school. On the first day, he's so nervous, he starts flop sweating and conpletely soaks through his dress shirt and talks a nillion niles a ninute. He realizes just how hard a job teaching really can be, especially teaching teenagers who have a way of peering into your very soul and sizing you up in about 5 seconds flat. It looks like fron previews that Nr. Danza is going to get the hang of it by the end of the season and actually becone a decent teacher.
It looks like he's only got one class. One class? 20ish students? Wow. When I taught 8th grade, I had 120 students. At this particular juncture of ny life, I find it hard to inagine wanting to go back to teaching full tine.
I'd rather be planting trees.
No, seriously. I would.

Taking the Challenge

2010-09-29T19:12:00.000-07:00

Grab This Button

Before reading this, please note that the role of a certain letter on the keyboard will be played by a substitute today. You'll figure it out soon enough. Apparently it is on vacation or hiatus or just stuck.

So...31 for 21. I'n finally connitted to trying to blog each day for the entire nonth of October in honor of Down Syndrone awareness nonth and in honor of ny good friend Tricia whose excellent idea this was 4 years ago and every year since. I'll probably fail very soon at it, but it's nice to have goals.

I nay blog about Down syndrone a lot or not nuch at all, depending on how the nood strikes.

There's that #!$* Perspective, Again

2010-09-24T05:28:00.000-07:00

Last night was "Senior Night" at Jake's tennis match at school. The parents were called up just before the player introductions, handed flowers, and a few nice words were said about each of the seniors. It's hard not to feel emotional at these things because we know this is the last season of tennis we'll watch Jake play. All year long, we'll progress through a series of these lasts and it will make us feel nostalgic and wistful and proud, and at times, sad.

Still, I can't help thinking about Seth, who would be a 7th grader this year if he were here with us. I keep thinking about the fact that though Jake will soon be 18 and will soon leave home to begin the next phase of his life, how lucky we are that we get to be a part of it...that we have the privilege of watching it all unfold and continue to enjoy a relationship with him and with Chloe and Simon and Jude. Even now, 10 years after Seth's death, we feel no less his parents than we did then. The difference is we no longer get to enjoy that relationship. It ended so abruptly, so tragically, and it was so final. It's still hard to get my head around sometimes, still! The regret, the guilt, the sense of loss, it just never ends. We have managed to move on, sometimes I feel we've even managed to muster a modicum of grace in the whole thing. But, oh, it never ends.

As we enjoy all the pomp and circumstance of Jake's senior year, and as I start to feel sad about how much we'll miss him when he's not here mouthing off everyday and displaying his amazing superpowers of smartassery (he is his mother's son, after all), I remember that he's still here walking around on Earth among us, still living and breathing and growing, and still part of our lives in a tangible way that we don't take for granted for one second.

It is Well with my Soul...or, it should be.

2010-09-20T04:50:00.000-07:00

Churchgoers from back in the day may remember that old hymn "It is well (it is well) with my soul (with my soul)". It was a favorite at the church where I grew up. We were sitting in church yesterday and the pastor was talking about how we all seek after the things that will bring us happiness and fulfillment and how nothing in this world will do it. He said, "I'll be happy in my life when ______________," asking each of us to mentally fill in the blank.

I thought about that and realized that I am basically happy right now. I wouldn't change things about my life. I'm not chasing after some" if only this or that thing were different". Upon that realization, I wondered why I am still so unsettled? What's my problem, anyway?

Last night I pulled a book off the shelf in our office called The Power of a Positive Mom. I have recently felt that many of my interactions with my kids are about nagging them to do stuff and not enough of the building them up stuff that this author was talking about. Steve always says that growing up, his mom had him convinced that he could do anything he wanted to do! He was disappointed when he realized as a teenager that her words weren't entirely true...he would never be in the NBA no matter how much he wanted to or how hard he worked. Still, he claims that at different points in his life, the memory of his mother's belief in him and encouragement was what gave him the courage to attempt those things that at times may have been just beyond his reach.
Am I that kind of mom? What am I instilling in my kids that will be a positive, lasting influence?

I think "positive" is the key word. I don't think of myself as a negative person, but I'm afraid over the years, a fair amount of negativity must have crept in. I have always been a smartass, far happier to sit back and make fun of others who were up front being movers and shakers than to actually be doing anything myself. Over the last 10 years, I've cultivated an even darker side, questioning all my life-long beliefs and often not seeing the best in the people around me. In some ways, I don't much like the person I've become. In other ways, I am proud of the way I've persevered . It just looks like some of the battle scars have left me less than the person I want to be. The truth is, I do feel unsettled. It's not about a quest for things, it's a quest for a better, stronger character. The good news is it's never too late. Every day is a new chance to turn it all around.

Absolute Assuredness of our Rightness with a Side Order of Insecurity

2010-09-19T06:04:00.000-07:00

Steve and I have been reading, gathering articles, and talking to as many people as we can think of for advice and support before we go to the next meeting of the IEP committee for Jude. We are still pretty sure that he's in the right placement based on all of the above plus our own gut feelings about it. Still, there's the part of me that questions it and wonders if Boss Lady doesn't have a point about Jude being better served in a smaller class where he really can go at his pace and where some of his issues can be more effectively addressed. For now, anyway.

The hard truth is, if he does go to the other school, he'll likely never make his way back. No one ever does. But he could still have an inclusive education there. Once he's got some of his running and hitting and toileting and communicating issues worked out, I feel confident that he would be included in the general education classroom there.I know that is what they strive for, and I think so highly of the resource teacher there.
It's still in our community, sort of, just the other end of town part of our community. In other words, it really wouldn't be the worst thing in the world.

Still, we were at our homecoming football game Friday night, and so many of the teachers were there saying hi and fawning over both Simon and Jude. I couldn't help thinking about how they wouldn't even know Jude if we'd made a different decision. I ended up sitting next to our neighbor who works basically in the same capacity as "Boss Lady", but in a different district. I ran the short version of the saga by her and she said, "I'd do exactly the same thing as you are doing if it were my child." It meant a lot coming from her. Then, a 5th grade teacher at the boys' school, (she was Chloe's teacher) went out of her way to tell me that she is so glad that Jude is at our school and that she loves seeing him there and she just thinks it's great and she just wanted me to know that. It was sort of pointed, like she knew about the whole thing (she's best friends with one of the other special education teachers, so I bet she does) and just wanted to offer her support.

I don't know what will happen. I feel my resolve weakening at times and second guess our decision and continuing struggle to keep him there, but I guess at this point I'm coming to a more peaceful place of realization that no matter what, he'll be just fine.

Senior Pictures...I'll Share a Few

2010-09-11T15:17:00.000-07:00

Jake is a senior? It can't be. Where did the last nearly 18 years go?

Advocating is Exhausting

2010-09-09T20:23:00.000-07:00

Today was the big meeting. Whew. I've been doing a lot more sighing today since we got home. I swear this stuff takes years off my life.
The meeting was the entire IEP committee consisting of Steve and me, the principal, the resource teacher (or Teacher of Record), the general education kindergarten teacher, the preschool teacher, the resource teacher from the other district school, and the director of special services from the co-op. In other words, there were quite a few of us.
It started off all nicey-nice. We discussed Jude's strengths. Everyone had super nice things to say about Jude, including that he sure is cute. They were only buttering us up so they could eat us alive.
Next, we discussed obstacles that we see as being in the way to Jude's progress at school. Everyone agreed that he has some behaviors that need to be addressed swiftly and consistently so that he can be successful at school. I had found an article online (click here; it's full of great tips) giving strategies for dealing with difficult behaviors that I printed right off and took to the meeting. Aren't I helpful?

But after all of that, the director, the "boss lady" spoke up and said she felt we had a couple of options regarding Jude. One was that we could send him to the other school (across town, in a completely different district) to the "Intensive Intervention" classroom, OR that we could create a type of preschool/kindergarten hybrid in which Jude would spend part of his day in each setting gaining both social and academic skills to gain "readiness" for kindergarten and start over next fall as a full-time kindergarten student. Remaining in his current placement wasn't even mentioned as an option.

It was at this point that Steve spoke up and told boss lady to shove it up her ass. Oh, wait. He didn't say that. He meant to. What he said instead was that he didn't care for either of those options and that he felt it was far too early in the year to even consider such huge shifts. The preschool teacher spoke up and said she had learned from experience that sending a kindergarten age child back into the preschool class is not beneficial to the child either socially, emotionally, or academically. She also noted how observant Jude is of his peers and how much he imitates those around him. She thought that placing him back with 3-yr-olds would be a mistake.

From there, the teacher from the other school read us her report from the day she came to observe Jude. She feels Jude's program at the current school needs a lot of tweaking. Specifically, she would like to see behaviors being addressed through a Behavior Plan and more modifications being made to his classroom work so that it is appropriate to him.

Then Boss Lady made some bizarre remarks about how Jude can't possibly succeed in kindergarten until he can recognize all the letters of his name and kept harping on that one skill over and over. Everyone looked at her with wonder and dismay.

After some more impassioned discussion about how Steve and I really want Jude to be included at his own neighborhood school and all the reasons we do and that we aren't in denial about the challenges and that we realize that Jude is below grade level, but that he likely always will be, and a few other things about presuming competance and keeping expectations high and reaching for the stars and all that, Boss Lady gathered up her stuff and mumbled something about how she had another meeting to get to. On her way out, she said some more weird stuff about how she respected our opinion and that we didn't have to take her recommendations but that she did disagree with us and we all care so much about Jude that we're all just prima donnas..just every one of us!

More wonder and dismay. Seriously, no one could even make eye contact at that point. It was as if we had entered some parallel universe or something. The room started spinning a little. After she left, everyone seemed to take a collective sigh of relief and we proceeded to get on to some concrete talk about how to make this thing work for Jude right where he is. We did agree to meet again at the end of the grading period to see how things are going. I have a feeling we'll have to fight again to keep him put, but until that time, we're gathering data that supports the idea that kids do better when they are included in their own schools...better in every imaginable way.
Plus, Jude is 5. Good grief. Let's all give him at least five minutes to acclimate to all day kindergarten. It's waaaaay too early to know whether this is working or not. How about we try some a different approach or two?

Prima Donnas? According to Webster's, this is a vain or undisciplined person who finds it difficult to work under direction or as part of a team
Please. Just because we don't agree with the recommendation? Just because we'd like to make sure we've exhausted every possible intervention first? We were respectful and pleasant throughout the entire meeting and have been with all therapists and school personnel since the outset. We are not prima donnas. Just advocates. Badass advocates.

Had to Share

2010-09-08T10:44:00.000-07:00

Stacy shared this article with me in the comments (thank you!), and I had to pass it along. For those of us who dream about all the possibilities for our children with disabilities, this was an encouragement.

Guess what? School!

2010-09-03T20:46:00.000-07:00

I have a one-track mind these days. Steve and I were able to go to the school yesterday and have lunch with the boys and then I stayed around for a couple hours to observe. I can't say I really saw anything that surprised me, but then again, I am used to Jude's behaviors that others might find shocking.

The good stuff: the other children seem to really like Jude. At recess, a few of the boys lined up to high-five with him. Jude seems to be happy at school. During one activity, the teacher asked each child to illustrate a page for a book the whole class was working on together, "Did You Ever See?" Jude's page was "Did you ever see a goat in a boat?" Jude was to illustate that idea and then share his picture with the class. At the end of the time all the students were making their pictures, they were called over to the rug and called up one-by-one to show everyone their work. Jude sat patiently watching as everyone else shared, then when the teacher called him up, he got up, walked to the front of the room, held up his picture and said some words that no one could understand. His teacher played along saying, "Yes, Jude. You drew a goat in a boat!" (By the way, there was no discernable goat or boat in that picture, but Jude was not the only kindergartener whose picture didn't look like anything). However, after his teacher said "boat", Jude repeated boat back to her and signed boat. She said, "Yes, Jude, that's the sign for boat! Good job!" He looked so proud. He went back to his seat and sat down and listened while the rest of the kids showed their pictures.
Also, after my conversation with the principal the other day, Jude is on an hourly toileting schedule and is staying dry all day at school.

The not-so-good stuff: Jude's behaviors are a little bit out of control. Okay, a lot out of control at times. He hums and moans loudly and pops up and tries to run away repeatedly during "quiet time" (this is a 15 min. period after lunch/recess when the kids all lie on the floor, lights off, with soft music playing, meant to reign them all back in for their afternoon academic block) I don't think he had a solid five seconds of "quiet" during quiet time. During math centers, he continually wiped the math manipulatives off the table and then threw them across the room when he was supposed to be cleaning up.
During time on the rug, Jude lunged at the little girl in front of him and wrapped his arms around her neck so tightly that she was scared. The aide peeled him off quickly so there were no tears, but it was close.
Jude pushes, hits and kicks other students just about any time he is in proximity with them.

Jude is probably at least 1-2 years behind his peers academically (already). I think the gap will continue to widen. However, I have read article after article about how an inclusive school situation is best for children with disabilities because they are surrounded by age appropriate peers who model language and behavior that they can imitate.
I can see that it's controversial and people seem to have strong opinions on either side of the issue: to include in a general education classroom with support, or segregate from same-age peers in a self-contained classroom with children of varying ages and disabilities.
On principle, I far prefer the former. I like Jude being with his same-age peers. I like him being in the lunch room and at recess with Simon. Simon is now becoming more and more aware of Jude's differences, but he seems even at such a young age to celebrate it. He is generally patient with the annoying stuff and highly amused with the funny stuff and, well, he is Jude's best friend and biggest fan. I hope it lasts for their whole lives. If Jude is taken from his neighborhood school, put on a bus and sent across town to attend a school in another district where he'll rarely ever see past the 4 walls of his special needs classroom, I can't see how that's a good thing. I suppose he would receive more individualized instruction, on his own level, at his own pace. Isn't it just as useful to be exposed to grade level curriculum so long as his resource teacher and classroom teacher work together to modify the lessons and assignments so that they are appropriate for Jude?

Maybe I'm living in a dream world. I know there are parents and teachers out there who still feel that inclusion is a nightmare, dreamed up by idealists who don't know what's it like in the trenches of the classroom. I know a little about what it's like. I taught middle school language arts for seven years. One year, I had an inclusive class for one period of the day. About half the students in this particular class had an IEP. Some had ADD/ADHD, a few had autism. The resource teacher would accompany them to class and help them by modifying their assignments when necessary. If I had it to do over again, I would utilize her expertise even more. I'm sure there are ways we could have worked together to reach those students even more effectively. The point is, it wasn't a nighmare at all. It was the most natural thing in the world.

Did you know one in five people either has a disability or will have a disability? It's not unusual or unnatural. It's a part of life. None of us is perfectly put together, and in fact all of us are disabled in some way or another. Some people's disabilites are just more visible than others. Some disabilities are more...disabling.
But disabilities are part of the human condition. Children who have been labeled "special needs" shouldn't have to live the bulk of their formative years cloistered away in classrooms hidden from their peers, from the normal routine of school life To me, that's the nightmare.

Well, Alright,I'll Spill A Little More

2010-09-01T07:02:00.000-07:00

Yesterday at Cyclefit class at the Y, a woman I recognize from school, but don't really know, was sitting on the bike next to mine. Between pants, she asked me how school was going for the boys. I said that Simon is acclimating beautifully, but that it's going to be a little bit more of a struggle for Jude.

She asked about his teacher and when I told her who it was, she had this knowing, "I'm sorry" kind of look on her face. It turns out that my Cyclefit friend job shares at the co-op and subs there and knows this teacher. She told me that last year there was some trouble with her mistreating a student. Evidently she's got a reputation for it.

A couple days ago a friend of mine was at school having lunch with her son on his birthday and sat near Jude. She witnessed an adult (she assumed it was just a mean cafeteria lady) being all exasperated with Jude because he needed some help peeling his banana and getting the straw into his juicebag. I mean, really, how exhausting!
My friend said she was so short with him, completely irritated with him. Turns out? It is his resource teacher. The person who is in charge of his educational program. A person who deliberately chose to work with children who have special needs.
Excellent.

So, I spent some time in the principal's office that day explaining that I had tried to be patient, realizing that we're all just getting started and getting to know one another and settling into the routine, but I had to speak up about a couple things:
-the fact that Jude came home 2 days in a row in a dirty pull-up that had been that way for hours as evidenced by the way I had to chisel the dried poo off his legs.
-the fact that his kindergarten assignments are not being modified at all except by me.
-the fact that he is being treated with anything less than kindness.

I reiterated to her that we had a hard choice to make last spring and we chose them. I am still hopeful that we can work it all out. I like the principal very much and feel she is truly an advocate for Jude. She assures me that she wants him to be a part of the school.

In other Jude news, we had our 3rd session with the new speech therapist last night at the hospital and I really like her. She has started Jude on PECS and he is taking to it very quickly. She is impressed by how he's picking it up. She said he's going about 3 times as fast as what she had planned for. I'm happy that he'll have a more concrete way to communicate soon and he seems to be excited about it, too. If speech never comes (and we all still think/hope it will), there are some way cool applications he could use on the iPad like this when he gets older that would serve the same purpose.

Simon's got a new fascination with video games and loving school.
Chloe's loving school, doing well, taking voice lessons.
Jakey's playing tennis, hating school but tolerating it, and applying to colleges.

More Thoughts about School

2010-08-31T20:04:00.000-07:00

Things aren't going well. I'm not going to write about all of it. I think I'm scaring some of you. Be assured that we won't rest until the situation improves dramatically.

In the meantime, I know we've already been labeled as difficult parents. I know that people must talk about us having our heads buried in the sand, trying to make Jude into something that he is not. Trying to make him "normal" because we prefer an inclusive classroom.

For the record, we are aware that Jude has Down syndrome. We're aware that he has some difficult behaviors. We know all too well that Jude's education is often going to be an up-at-dawn, pride-swallowing endeavor that we will never fully tell anyone about. But Jude's also just a little kid. He has every right to go to school and learn alongside his peers. He deserves that chance.

School... (Said Followed by a Deep Sigh)

2010-08-30T06:50:00.000-07:00

Our understanding of inclusion is that a student with a disability is to be included in the general education setting with his or her typical peers as much as is possible and beneficial, with supports and modifications so that the student can be successful.
All of this should also ideally happen in the student's own neighborhood school.

Jude has grown up with a group of kids, gone to preschool with them, and has a twin brother who all go to this school. That is where we wanted him to be. We were encouraged by the entire transition committee last spring that we should do this, that Jude was welcome at the school.
Here we are, a couple of weeks in, and it looks like he's not so welcome afterall.

On the first day, it did not appear that he had the promised full-time aide that we all knew he would need due to his "flight risk" nature, in addition to other things.
I called the Director of the Special Needs Co-op before we ever left the parking lot to question why there was no aide, and she said "Well, Jude may not have his very own aide, but there will be supports in his classroom. He is not the only student with special needs." Hmmmm. Being familiar with his work, I knew how important it was to impress upon everyone how quick and wiley he can be about his escapes. I didn't want to show up to pick him up that afternoon to find that no one knew of his whereabouts. He does now have an aide, but we had to insist.

No modifications seem to be made for Jude's kindergarten assignments. Here is a child who doesn't speak, not much, doesn't know his letters, and his assignment for the weekend was to read a homemade "I" book (I read, I write, I slide, I smile). Um. So we practiced "saying" those words together a bunch of times, but also worked on the signs for those words. Wouldn't that have been something the school came up with for him? He's simply being dumped into the regular kindergarten room with regular kindergarten assignments with an aide to make sure he doesn't run away and expected to function more or less on his own.

Last week I received an email from the Director of the co-op saying that Jude's needs are far greater than the other children in the classroom (duh), even the other children with disabilities. She has asked the special education teacher from the other school (the one we didn't choose because it's out of our district but seems to be where most of the children with special needs get shipped in the co-op)
to come observe Jude at his current school, write a report with recommendations, and that all of us should meet soon to re-evaluate Jude's "placement". We can see the writing on the wall: Jude has been deemed just too "needy" to go to his own school.

I happen to have some inside information about how Jude's days are going at school. He is not being mistreated, exactly (though he did come home 2 days in a row in the same pull-up he'd gone in and dirty), but he is being ignored. It's like he's invisible. During circle time, the entire class sits together on a big rug, but Jude is placed on a separate carpet square in the back of the room away from everyone. During daily calender, everyone in the class has a role to play with doing calender...everyone except Jude. He's just there. Being kept safe and out of trouble. Not being included other than being allowed to be in the room with everyone else.

Our school system has a reputation for being discriminatory toward children with disabilities, especially those whose disabilities are visible. We had hoped the tide was turning with a new principal who is a former special education teacher, but so far we are less than pleased.

What to do? We know the recommendation will be to move him to the other school. The other school is a self-contained environment, not inclusive. Jude will spent the bulk of his day in a classroom with 9 other students with disabilities.
I've been told once this recommendation is made, if we resist we will be told by this director that we are not making a decision in the best interest of our child. We'll be made to feel that we are putting Jude at a disadvantage. We'll be labeled "difficult". The whole thing would likely go to mediation if we choose not to follow the recommendation of this committee.

If we go along, I feel like we've just been bullied into it. That at the ripe old age of 5, 2 weeks into kindergarten, that we've thrown in the towel.
I'm told that if Jude progresses well in the other school and can work himself up to functioning at or near grade level, the committee will then recommend that he be sent back to his own school. To make new friends. To readjust to those new, much higher, more independent expectations.

I don't see how we can win here.

Shit.

Sunday: A Cursory Report

2010-08-29T08:53:00.000-07:00

Church today. Arrived late, left early. Blech. Know I should have felt moved by some of the things pastor said. Wasn't. Completely numb.
Realized today for no real reason that I am kind of a crappy friend. Inattentive. Approach/withdraw tactic (my fav!) has proven unsuccessful.
Vowed privately to do better. Relationships are all we've got.
Taking the boys swimming.

Ouch

2010-08-25T19:09:00.000-07:00

This special needs parenting business is not for the faint of heart or the thin of skin, let me just tell ya. I have had my dander up (and my feelings hurt) at least three times just in the last 24 hours!

Wanna hear about it? I knew you did.
We'll proceed in chronological order. Last night I received an email for the director of special services co-op for our county. She indicated that Jude is very happy at school and that everyone enjoys working with him due to his sunny disposition. However, Jude's needs "are so much greater than the other children in his class, even the other children with disabilities." Harsh. And irrelevant! The school's job is to meet Jude where he is, regardless of how that compares to the other children. Didn't care for it.

Next, I found out this morning that one of the girls in Jude's classroom has been moved to another class, in large part because her mother didn't want her in a class with "retards". This is what she told another mom.

And finally, I received the snack list for September in Jude's classroom. By middle of September, the teacher will have gone through all the students taking turns bringing in snacks for their classmates and gone back to the beginning of the list. Jude isn't on it. Is he invisible? Is he not considered one of the class? Or was it just an oversight?
Oh, and I provided his classroom teacher with a friendly letter to send home to the other parents about Down syndrome in case their children had questions. To date, she has ignored it. And so we end up with jackwagons like that lady who move their kids out because of the retard in their midst.

And Jude. He is so sweet, so excited, so happy to be there. So sure everyone loves him. It breaks my heart.

I'm going to bed before anything else happens. Enough for one day, already.

First Day of School

2010-08-18T05:44:00.000-07:00

The day seemed to go well. Drop off at the elementary was a disaster, prompting me to make a couple of phone calls to the principal and the director of special needs services in our county before even leaving the parking lot (no support for Jude showed up) but everything got worked out, and the rest of the day seemed to go well. Simon loves kindergarten and his teacher and has several preschool friends in his class. Chloe is thrilled to be back to school, and Jake. Well, Jake views school as a necessary evil.
As for me, I did some weeding yesterday, took my MIL to lunch, and enjoyed some peace and quiet!
Day 2

Panic

2010-08-12T09:15:00.000-07:00

I sounded so calm about kindergarten coming up just a few days ago, didn't I? But today we will go to the open house for kindergarten and classes begin on Tuesday and I am beginning to second guess our decision to send Jude to our own neighborhood school.

Last night I watched the trailer on youtube for a documentary called "Deedah" about a young girl and her little brother with Down syndrome. The boy is in kindergarten and so very NOT like Jude. I mean, he seemed not that much different from Simon. Talking, playing, interacting very much like a typical boy. In comparison, it made Jude look just so, well, disabled. It hurt. The reality of where we are beginning kindergarten is disheartening.

Jude walks around the house from room to room slamming doors over and over. This is a new development, within the last week or so. He chews on his index finger and thumb until his joints are swollen, and as a delightful by-product, soaks his shirt with drool. He hums and makes weird noises. When he speaks, it sounds like a charasmatic overcome by the spirit (see a Robert Tilden video on youtube for demonstration if you don't know what I mean about speaking in tongues). Not a word of it is intelligible. He utters the occasional "no" or "ow" or "mama" and nods yes and no like a champ and takes my hand and leads me to what he wants and somehow or another, we get along, but he is not like a typical five year old. Oh, and this morning? He woke up with a swollen left eye. I have no idea why. It could be a sty. It could be a mosquito bite. But it is swolllen and purple and makes him look a little bit less cute than usual, which I hate from the whole first impression perspective.

I don't know what we were thinking putting him in this school. The other was so much more geared toward the "educable mentally disabled". Well, yes I do. We put him there because that is where we wanted him to go. We wanted our school to rise to the occasion of meeting Jude's needs, and maybe they will. We wanted him to go to the same school as Simon.

Still, with it all looming now, I am questioning our decision. The worst thing that can happen is just that it doesn't go well and we have to make a change, but I'd hate to do that mid-year. Jude would roll with it, though. That is one really great thing about Jude, he rolls with it.

How Phillip Yancy Stopped Me in my Tracks Last Night

2010-08-11T07:33:00.001-07:00

So, some of you are aware of my little faith struggles. It's nothing new, but it's ramped up a smidge over the last couple of years for some reason. Anyway, for every book or two that I read about why faith is dumb and how all people of faith are dangerous nutjobs, I try to counter it with a book of Christian apologetics or a counter argument so I can see which one makes more sense to me. Like, after I read Sam Harris's Letter to a Christian Nation, I read Douglas Wilson's Letter from a Christian Citizen.

So, because I had just recently read a couple of books by Bart Ehrman (professor at UNC and expert in New Testament and textual criticism and a former Christian who left his faith partly because of discrepancies and contradictions in the Bible but primarily because of his inability to reconcile an all-knowing, all-powerful, loving God with all the evil and suffering in the world), I thought I'd follow up with a book I'd read before, but really liked called Reaching for the Invisible God by Phillip Yancey. Because the thing is, if God doesn't exist, why can't I just let it go? I'm tempted to do just that in the worst way. Why, like the mafia, does he/she/it just keep pulling me back in? I like Phillip Yancy because he is a fellow doubter. He doesn't give easy,cute, pat answers but admits to long, infuriating dry spells with God. He tells the truth. This whole book is filled with stories about people like me who struggle.

An excerpt:
"One of my writing colleagues very nearly abandoned his faith after a horrific series of health and emotional problems. During his darkest hour, he said, God stayed silent. Prayer did nothing for him. At the end when he finally emerged fromt he valley of the shadow, he told me, "You know what kept me from chucking the whole thing? Just this. It would mean having to go to three or four people I respect more than anyone else in the world and tell them, "You're deceived." I could not bring myself to deny the reality of God's spirit in their lives."

I am surrounded by believers who are hurt by my rejection of what they hold to be the most important truth of their lives. And I don't like hurting people. If I never find my way back, I can't tell the people in my life who I love that they are wrong because I could never know that for sure. I just wish it could all be more obvious. I guess that wouldn't require any faith, though.

My Affliction: A Wee Bit of Whining

2010-08-11T06:32:00.000-07:00

I am covered in poison ivy. All summer, I've avoided it, and now I've got a raging case of it on my whole lower half that is making me consider chopping off my legs just to stop itching. It's a maddening itch like no other, and once you scratch it, it only itches more. I keep waking up in the night finding myself clawing patches of it until bleeding.
I dislike poison ivy. And that concludes this whining session.

The End of an Era

2010-08-10T21:03:00.000-07:00

I go tomorrow to register the littles for kindergarten. All day kindergarten. Sometimes I feel as though the last five years have flown by and other times I am sure I have felt each and every day of them.
It is time, to be sure. I think we are all ready to move on to this next phase, but it's bittersweet. Simon and Jude will learn quickly that they can survive just fine away from their mom for a handful of hours every day. Their dependence on me will lessen in subtle ways. They will seem older somehow after just that first week of school. They'll pick up new things at school, new words or phrases, new behaviors; some we will like and some we could've done without.
I will have the opportunity to do some things just for me that I haven't had much in the last five years. I will have whole hours of each weekday that my head doesn't have to be on a swivel. There will be quiet and order. It will be wonderful...and sad.

In addition, next Tuesday begins Jake's senior year of high school. He, too, will go through so many changes over the next year or two. Like Simon and Jude, Jake will never be quite the same after having been away at school. He'll have only himself to rely on to get to class on time, keep track of his obligations regarding assignments and projects, do his laundry every once in a while when all underwear reserves have been depleted, and to remember to get a haircut every now and then. In essence, it is the beginning of adulthood. While at 19 he will still be just a kid, when Jake returns home to us after his first year away at college, he won't be quite the same kid who left us in the fall. In the same way that it is sad to let go of what we've known and the family dynamic that exists with him as a part of the everyday, it is also time. I'm anxious to see what lies ahead for Jake and the kind of man he will become.

Poops are in my playhouse.

2010-08-03T12:48:00.000-07:00

When I was a teenager, my friend Stacey and I were visiting at our youth minister's house. His daughter, then three or four years old, came in from playing outside and announced that poops were in her playhouse. "Poops?" we asked in disbelief. "Yes, poops."
Turns out that Meghan was having so much fun playing in her playhouse that she didn't want to take the time to come inside and put her poops on the potty. Hilarious. To us. At the time, anyway. We didn't have to clean up the poops.

Jude and Simon have a playhouse in the basement. Guess what I just found in it a little while ago.
It was so much funnier when it was someone else's kid who wasn't about to start kindergarten in five minutes.

Sigh.

Company

2010-07-30T06:36:00.000-07:00

Steve's sister is here this week visiting along with her daughter, husband, and three kids. Altogether with grammy and our six, there are 13 people here for the week! Chaos is fun. The cousins are having a good time playing and the grown-ups are having fun playing, too.

Regarding My Qualifications as a Sunday School Teacher

2010-07-27T19:21:00.000-07:00

The coordinator of children's ministry volunteers at church sent me a message today which included the sentence, "We are looking for people who are passionate about teaching children the love of Christ."

Hmmmmm. Here's what I bring to the table: experience with children, and an ass-ton of it. Love children, but I love mine more than I love yours. I don't really enjoy changing my own kid's poopy diaper, much less yours.
I am free of felony convictions, though I have been the recipient of a number of speeding tickets. I am passionate about a handful of things, but teaching children the love of Christ just isn't on that list. Jesus is just alright, oh yeah! But I don't wake up each morning with a hankering to go tell little kids about it via flannel graph, puppet shows, song & dance, or Veggie Tales DVD.
Good, solid, quality babysitting is what I have to offer.
Think I'll get fired? Not a chance. They're desperate for warm bodies to help corral the rug rats, passionate or not. I'll have to quit or die to ever get out of it.

It turns out I have a blog!

2010-07-26T17:32:00.000-07:00

Oh, hi blog. I've been busy doing stuff other than blogging, evidently, which is a good sign. Not that there's anything wrong with blogs or blogging, I'm simply saying that...oh, nevermind. Let's get on with the updates, shall we?

The most exciting thing that has happened to me lately is our recent trip to New York City. Chloe and I were able to go along with a tour group from her school and we had more fun than should be allowed. Before I get to the list of all the awesomeness that was our trip, let me start off with describing one of my favorite things about my veryowndaughter. She is liked well enough by the kids in her school and even by the so-called "populars", but the truth is she just couldn't give a rat's ass and I really dig that about her. She is happy to sit with whomever on the bus, she's nice to everyone, but truth-be-told, she's kind of got her own agenda and if people are on board with it, great. If not, well that's just fine, too. She's...confident. But not arrogant. She's about the coolest almost 14-year-old girl you're likely to meet. But I'm probably biased.

Now on with highlights of the trip: Top of the Rock. Not the most famous place to view the city, but it is the best. Wow. Just wow.
Rockerfeller Center, in general. The Today Show. Chloe got to shake hands with Matt Lauer and Meredith Viera, who by the way, are pencil thin in real life. But very nice and charming, despite their thinness.
Yankee game in the new stadium. We sat in the absolute top row, as high as we could be. I needed oxygen. Plus those steps were so steep I felt like I was going to fall into the field. Yankees lost, but who cares? I payed about six dollars for a hot dog. Walked at night down several blocks of the Bronx with my little group of girls. Saw Alex Rodriguez and Derek Jeter, but I have no idea how thin they are because they were as big as the period at the end of this sentence. Top row, remember?
Toured NBC studio. Saw the SNL stage, the old Late Night with David Letterman stage (currently the Dr. Oz show), and lost my cell phone in the gift shop while buying Steve the "Free Ryan" shirt from The Office and Jake a "Mouse Rat" shirt from Parks & Recreation.
Saw Justin Timberlake in Central Park at the Bethesda Fountain while he was filming a movie. Saw that guy from Weeds in Greenwich Village who plays Dean Hodes. Ate a gluten-free panini.
Ate lasagna in Little Italy. Bought knock-off purses in back, secret rooms in Chinatown. Took a cab. Rode the subway. Toured St. John the Divine Catherdral. Saw Ground Zero. Took Chloe's picture with some of New York's Finest. Handled some $1200 pumps in Louis Vuitton. Played with an iPad in the Apple Store on 5th Avenue. Saw a $1000 stuffed animal in FAO Shwartz. Saw a movie on Times Square. Ate a hot dog from a street vendor. Went to Madame Tussaud's wax museum. Saw a show on Broadway, "Mamma Mia" and got my picture taken in front of the Ed Sullivan Theater where my beloved Dave tapes his show. Slept overnight twice on the bus. Threw up on the bus into my afghan. Threw my afghan away in the trash at a rest stop somewhere in Pennsylvania. Saw the Statue of Liberty and Ellis Island. Bought a foam hat like Lady Liberty's and wore it proudly across the Hudson on the ferry.

Behold, the pictures:

Chloe is the 2nd from right standing. On Wall street, where Washington took his oath as first president.

Chloe is all the way to right in front row. Bethesda Fountain in Central Park. Hotter than blazes that day. Bought a $5 bottle of water.

Me, complete goofball.

Today

2010-07-07T17:41:00.000-07:00

Today marks 10 years since Seth died. A decade! Wow. That's hard to believe. A lot has happened in those 10 years. I didn't think it was possible, but life has gone on without Seth. None of us are quite the same people we might have been if he'd stayed around. We are in some ways better, and in some ways worse. Two whole lives exist today because Seth's life was lost.

The highlight of today was watching Jude and Simon in the pool. This summer, they have both learned to swim. They are not yet ready for the English Channel, but they are swimming. It is a thing of beauty.

Fishing Buddies

2010-07-04T05:22:00.000-07:00

What We've Been Doing

2010-07-01T21:22:00.000-07:00

Yesterday Steve and I built a sandbox for the boys, which was a simultaneously crazy and wonderful thing to do. They love it, of course, and we've had a hard time coaxing them out of it for meals and sleeping. But it's so, so messy and I'm pretty sure they have sand in their urethras and every other possible orifice of their little, sandy bodies.

Jude, Chloe and I all have summer colds. Yesterday as Jude was playing in the sandbox, I noticed that he had two long strands of snot hanging from each nostril, down to his chin, each of them coated in sand. It was not awesome. Even I, who will happily discuss pus, sputum, or any other secretion over dinner, was a tad disgusted by it. Then I reached over and grabbed the strands and rubbed them off my fingers into the grass.
Ah, motherhood.

It's time to make arrangements for Jake's senior pictures. Can you believe that I have a kid who's a senior? I'm far too young for that. We both keep dragging our feet about it. He doesn't like getting his picture taken and I'm in denial that he's a senior. We make a cute couple.

Tomorrow we're going fishing. Stay tuned for pictures!

I'm Going to Need You to Slow Down, Ma'am.

2010-06-30T21:54:00.000-07:00

That's what the officer said as he was handing me my citation this evening. Uggghh.
Shouldn't they be out catching real criminals?

Perspective

2010-06-29T21:20:00.000-07:00

In that last post, I wrote about wondering if I was being punished when Jude was born with Down syndrome.
Gosh, it's amazing the things I admit on this blog.

The Christian mindset tends toward thinking that everything is for a reason and that the Lord gives and the Lord takes away and that you reap what you sow.
When Seth died, a man came to our house and asked us what sin was in our lives that would have provoked such wrath from God. True story.
When I found out I was pregnant with twins, I thought God was redeeming all the years that the locusts had eaten (more Bible stuff) and that even though he had taken one boy, he was giving us 2 more!
When the boys were born and just minutes later the neonatologist told me that he suspected Jude had Down syndrome, I heard that accusing guy's voice in my head again. What have we done now? Why is God so mad at us?
Because, really. No one wants their child to have a chromosomal anomaly. Everyone wants healthy children with 10 fingers, 10 toes, and 46 chromosomes. I had pushed and pushed for our in vitro and then with the news that we were now entering into what Kathy Snow calls "Disability World" and special needs parenting, which feels daunting and endless in the beginning, I really wondered what I had done to all of us by not just leaving it alone. And God? Well, I was starting to suspect that he was a mean kid with a magnifying glass and an ant farm.

Years have passed. I look at Jude now, and I am just so very grateful for his life. I feel lucky to be his mom. Jude is a great, great kid, and so much more like other boys his age than different. Every hair on his head is precious to me. He is not suffering in any way. He is a rock star! I look at Down syndrome and God so differently than I did five years ago that it's hard for me to even remember how my thinking could have been so skewed.

I don't think God had anything to do with Seth's death.
I don't think God had anything to do with Jude's Ds.
I don't think God is mean.
I don't think God is.
At least not the way I used to.

Speaking of Crickets

2010-06-15T07:48:00.001-07:00

Really? No one has anything at all to say about the craziness I've been spewing lately?

More Stuff

2010-06-14T08:51:00.000-07:00

First, allow me to make a correction from yesterday's post. I wrote that Jake was health "conscience". Geez.
Apparently I haven't quite yet put on my proofreading hat.

Second, I am going to disclose some further information about the IVF topic so that you can better understand my Christian pathology.
When Seth was born, I was 28 years old. He was our 3rd child and 3rd C-section for me. "Done!" I declared from the mountaintops and I had my tubes tied. After he died, "Oops!" was what I was declaring from the depths of hell as I realized, of course, that I could never replace him but might, just might, want another baby. I was 30 at the time. So, being good Christians, Steve and I decided that I would have a tubal reversal surgery in the hopes that we would make it possible again and that we would pray, pray, pray our guts out and trust God. If he wanted us to have another baby, he would give us one.
Years passed. No baby.
Prayers were prayed. Crickets.
Just about the time I was ready to give up and take God's answer of "No," I became pregnant. About 2 weeks later, I miscarried.
God was clearly screwing with me.

Actually, I didn't really think that at the time, but it did stir the baby lust pot once again and at the ripe old age of 34, we knew we needed to act fast. Beyond 35, risk goes way up for stuff like, oh, Down syndrome.

So, even though we had reservations about IVF (what to do with any extra embryos?), we decided to proceed with one and only one round. If it worked, great. If it didn't, we would move on.
It totally worked! We got a baby, plus a bonus baby and a bonus chromosome!
At first, yes. I did think God was screwing with us. I thought maybe he was punishing us for going around him, so to speak, and doing the IVF after we had said that we would only make it possible with the tubal reversal and pray and trust. When we didn't get what we wanted, we sort of took matters into our own hands.
I thought, though, that if God hadn't wanted us to have a baby, he could've cast an unholy spell on the petri dish and mucked up the whole process. Or maybe he did. Maybe our own selfish disobedience was the reason Jude would have to live with Down syndrome.

Anyway, these are the kind of mental gymnastics you go through when you believe that there is a God who is in control of your life.
And it makes one wonder. And cook up doubts so profound that one has to go lie down with a cool cloth on one's head.

I wrote yesterday and again today that IVF is a way of going around God. I suppose the argument could be made that taking antibiotics to treat infection or chemotherapy to treat cancer or insulin to treat diabetes is a way of going around God too. If he wants us to die, we die. And there are religions who think this way. There was a boy about 10 years ago in our state who contracted meningitis and died over the course of a day or 2 because his parents' religious convictions would not allow for medical treatment. They thought prayer would save him. When he died, they said it was God's will.
I guess in my mind the difference with IVF is the dilemma of the extra embryos floating around. The tiny people on ice, if you believe life begins at conception.
It's a real conundrum for the Christian. Isn't it?

Stuff

2010-06-13T14:38:00.000-07:00

Let me explain. No, there is too much. Let me sum up.

Jake has a job! He began working at Arby's about a week ago. He completely hates it, but he's making some money and we think it's a great experience for him. The first day was just a lot of watching other people work at the cash register, taking out trash, wiping down tables. The second day, 11-2, it was baptism by fire on the cash register during the busy lunch rush. He said he botched several people's orders and he said he has learned one thing for sure thus far: all old people want to argue with him about their change. If he brings his own cup, he can have as much free pop as he wants while working, but he doesn't drink pop. He's all health conscience or something, making the rest of us look bad. I'd be drinking the sh$# out of that.

Church today was part 2 in a series about Jonah. You know, the guy who was allegedly swallowed by a big fish because he wouldn't do what God said. That story bothers me on so many levels. First of all, why wasn't Jonah allowed to say no? I thought we got to choose. Second, the fish part. Third, our pastor said that God will bring storms into our lives and allow us great trouble and pain so that we will come back to him and see things his way. Is that how it works? Then God wields his power like an angry tyrant. Stand back; this blog is about to be struck by lightning.

After church, Chloe and I and the boys went to lunch (Steve and Jake were working) and then to the shiny new metro YMCA. We paid a little extra so we could go to the various branches. This one is really nice! Jude did great in the child watch area and Chloe and I enjoyed a Zumba class, which Steve insists on calling "Jazzercise".

I've been thinking lately about the churches' stance on abortion and on stem cell research. I wonder why the church isn't more condemning of infertility treatments. There is a lot to be troubled about when millions of human embryos are out there, frozen, just waiting to be used, discarded, or used in research. Many who oppose abortion abhor not only the act of taking what they consider to be a human life, but also the act of "playing God", intervening in God's realm of life and death. But in vitro fertlization, while creating life, is still an act of going around God in way. I wonder why the Christians don't get more riled up about it. Probably because they really want babies.

I've had a toothache for about a week. I keep hoping it will go away. I don't like going to the dentist. Also have intermittent numb forearms and heartburn, and hot flashes. Stay tuned for more updates on the ailments of an aging woman!

We are in charge again this year of the music boosters activities calender at school. We have to line up a bajillion sponsors, get their logos and whatever copy they want for their ads, line it all up real nice-like, and then spend hours of eye-crossing typing of tiny little corporations activities into tiny little boxes on Excel, proofread, proofread, proofread, and get it all to the printer by July 1. Here it is the 13th already and I've done next to nothing. Ooops. Better get going.

Steve sold the boat and traded down for an old aluminum fishing boat. We took her out for her maiden voyage a couple of days ago. It's quite a thrill to reel in a fish you've caught, and I'm not even kidding. I never went fishing as a kid, but it's a lot of fun. Jude promptly threw his brand new fishing pole into the lake, so there was that. Oh, Jude.

Adventures at the Y

2010-06-08T08:14:00.000-07:00

Our little rural community now has a crappy little YMCA, so we joined. It's in an old building and doesn't have many amenities yet, but they have purchased land and hope to start a big capital campaign and build a shiny new huge one with a pool and indoor track. We country bumpkins can only dream about such things for now.

I find that working out with other people is good for me because I don't just quit when I get tired. This morning at my "CycleFit" class, I pretty much wanted to quit after about 10 minutes, but kept going because, while I am perfectly comfortable being a quitter in the privacy of my own home, it's embarrassing to be a quitter in front of people.

I've picked out several classes that I like to go to and so far, so good except for one thing: Jude. The Y offers a very inviting childcare room where I have been dropping off the boys for no more than about an hour at a time. In a new situation, I suppose Jude is finding his boundaries. He's been giving those ladies a time. After the first visit, they asked me if he had any sensory issues like reacting negatively to loud noises. I said no, he didn't, but they said he was going apeshit (paraphrase) because a baby was inconsolably crying. I was baffled. I've never observed him doing anything like that before or had any of his teachers or therapists notice it either. Maybe he was just upset at the crying. I don't like to hear a baby crying, either. Who does? Does it have to be a "sensory issue"?

On another occasion, Jude was bullying the smaller kids in the room. I said that he has been known to do that in preschool. If a new child comes who is younger and littler than him, he sees it as an opportunity to be the boss of someone. Smart, right? But unacceptable and BAD! So they just tried to keep him with bigger kids. Problem solved.

Today, a very kind and adorable Y employee came and got me out of my class because Jude was hitting and pushing kids, even bigger kids. They had tried time-outs to no avail. The girl was very apologetic and insisted that they want to continue trying to work with Jude and find a way for him to participate in the ChildWatch program, like it was some failing on their part. Phhhlt! See, I'm always thinking that they must be judging me as a terrible parent who doesn't discipline her kid.
It's one thing for a typical kid to be acting like a brat, but a kid with a disability is whole other thing. Reasoning is sometimes useless. Time-outs work to a point. Spankings, well that's just a can of worms, isn't it? And certainly not something that would be a tactic for teachers or childcare workers at the Y to utilize even if it were effective.

The thing with disicipline with a child with disabilities is that, like any type of learning, it takes lots and lots of repetition. Connections aren't made quickly or easily.

When I went in to get him, I shot him a most disapproving look from across the room.
I walked over to him and said, "Let's go" without my usual smile or hug. He knew he was in trouble. We got out into the hallway and he was already crying. I knelt down at eye level and was very stern with him about the hitting and pushing. More crying. When we got home, I had him go to time-out and talked to him again about the hitting and pushing. Crying.

I don't know if it made an impression, but we'll keep trying. What else can we do?

A Conversation with Simon

2010-06-04T07:05:00.000-07:00

Over his peanutbutter Cap'n Crunch while watching The Bonnie Hunt Show with me in the kitchen this morning, Simon notices Bonnie's guest who is an "animal expert" and is parading out a collection of exotic animals like timberwolves and mountain lions and a komodo dragon.

Simon: Mom, when animals die, do they go up to Jesus?
Me: I don't know. What do you think?
Simon: I don't think so.

thoughtful silence

Simon: How do we know that we go up to Jesus when we die?
Me: Well, we don't know it. Some people just believe it.
Simon: Well, I don't believe it.
Me: You don't? Why not?
Simon: I think maybe just our minds go up to Jesus, but our bodies just go in the ground. That's what I think.
Me: Oh, you don't think our whole bodies go to Jesus, but our minds do?
Simon: Yes. I think. But I don't know.

He's five. I wonder what conversations we'll be having when he's 10.

My Summer Reading Program

2010-06-03T08:39:00.000-07:00

The kids and I went to the library on Tuesday. In the past, we've joined the official summer reading program where you keep track of minutes of reading or books read for the older kids and then you check back in every now and then to receive your fabulous prizes! These would be things like stickers and little plastic toys or coupons for free fries at McDonalds.

We didn't join this year because I'm a rebel that way. I know that we all do plenty of reading around here and I thought, sanctimoniously, reading is its own reward! We don't need to prove ourselves to anyone at the library! We don't need to be bribed into reading with the promise of a temporary Spiderman tatoo or a free soft drink!
So we got a huge stack of books, walked right past the sign-up table for the program, and exited the library with our heads held high.

Also, I'm just too lazy and forgetful to actually show back up on the designated days to get the prizes.

I do wish I had remembered about a month ago to sign the boys up for story time at the library though. The librarian reads a story to them in her oh so animated way, and then they do a theme-related craft that they can take home. I'm not so crafty, so sometimes it's the only way to ensure that they will do creative crafty things on a regular basis in the summer. Classes are all full now, so I guess I'll have to make a small effort every now and then to do some cutting and pasting and such around here. Yuck.

Here's a list of my reading lately, not that you asked:

Letter to a Christian Nation Sam Harris
Letter from a Christian Citizen Douglas Wilson
The Bedwetter: Stories of Courage, Redemption and Pee Sarah Silverman
You Look Fine, Really Christie Mellor
Were You Raised by Wolves? Christie Mellor (would make a good graduation gift, btw)
Letters from a Skeptic Greg Boyd
Bartending for Dummies Ray Foley
The Road Cormac Mccarthy
Faith, Interrupted Eric Lax

I hardly ever read fiction anymore. I like my storytelling in movies, I guess.
That last one on the list I just finished last night. It's the loss of faith memoir of the son of an Episcopalian priest. It was interesting and well written. His journey reminds me somewhat of my own; there is no single dramatic realization or happening that brings about doubt. It's a series of things: influence of people, books, church, and a good dose of life experiences bring some to a point of no return with faith they may have known for a lifetime. It's not that faith cannot be recaptured, but it will not likely look anything like it did before. In the meantime, it is elusive. It made things easier, somehow, and it is missed, but gone.

Thoughts on Lost, Show Choir, and Summer

2010-05-25T22:25:00.000-07:00

In that order:

Lost finale. It's entirely possible that I get too caught up in my tv programs. These aren't real people. It's all made up by a couple of guys. But still, that show has had me in its grips since Day 1. They had me at plane crash on a remote island.
My opinion, for what it's worth (.02), is that the finale was a bit of a disappointment in that so very many of the big questions were left unanswered. I felt, um, dissatisfied with the lack of closure. However, the writers claim now that we shouldn't concentrate on those details and that it was all always more of a "character story". COP-OUT!!! I wanted answers. But, the premise of the show, the promise of eventual explanations to the mysteries of the island (which would never come), and the great characters and performances of the actors kept many of us coming back week after week and year after year. The finale was a mixed bag of laughter and tears and frustration for me, much like my daily life. I wish it had been different, but it was still good. The show, that is. And my life sometimes, too.
And the Jimmy Kimmel show with the Lost cast afterwards was a lot of fun, too.

Show Choir. Year end banquet was tonight and my kids got awards! Chloe was chosen as Most Valued Member in her choir and Jake got the Most Improved award, which is kind of funny because it means he was terrible going in. But the important thing is that he improved and in fact, got to be pretty good! We were proud of both of them. Simon and Jude were patient little angels throughout the evening, which made us proud of them, too. No pictures to document any of it because Steve and I get the award for Worst Picture-taking Parents Who Never Remember Their Camera To Capture The Important Moments.

Summer. Last day of school is Friday! Simon was done with preschool last Friday and Jude's last day was today. So though spring doesn't officially end for another month, we'll all be on summer vacation in just a couple of days. I really enjoy summer. I'm one of those strange people who actually really like having the kids around all the time. We are still busy in the summer, but the pace is so different.
I love all the outdoor stuff and the gardening and the sleeping in past 6am and the stargazing and the smell of fresh cut grass and hay and watching the corn grow and fishing and going to the zoo and the state fair and fireworks and swimming. Speaking of swimming, we have a new pool! Don't get excited; it's a glorified baby pool and it is quite the eyesore in our backyard. But we decided we just can't bear another summer at the city pool and we didn't have $50,000 sitting around to install a real pool, so this one will have to do for now.
I have been promised a real pool in the not too distant future. Maybe after Jake finishes college. But then Chloe goes right after that...Okay, maybe that future is a little more distant than I thought.
I'm trying not to develop an ulcer over the summer worrying about the boys drowning in this big bucket of water we have out there. We're using every layer of defense we can think of to safeguard against it including but not limited to:
house alarm
barriers
constant attention to safety
nothing climbable within five mile radius
head-on-swivel mode for entire summer

Simon is like Jake and Chloe were, just kind of attached at the hip all the time and not prone to wandering. Jude, however, knows no fear and is lightning fast. One eye must be kept on that kid at all times. If anything were to happen to him, I think I would just shrivel up and die myself.
I think about that sometimes: could I go through a loss like that again? I don't know if I could.
HEAD. ON. SWIVEL.
There are some things I can't control, like cancer and natural disasters, and there is nothing from the past that I can reverse, but I can keep my kids from falling into pools. That mistake will not be repeated.

Who are the people in your neighborhood?

2010-05-20T12:56:00.000-07:00

Remember that song from Sesame Street? It's been in my head all day today because it turns out I have some scary people in my neighborhood and didn't even know it.

I guess I should have suspected it. Crazy people are everywhere. It would be easy to be lulled into a false sense of security living in a quiet, little rural setting like we do. I was reminded to be ever vigilant this morning while watching Good Morning America. A woman from New Jersey was being interviewed about how a United States Census worker showed up at her door to complete her survey with all the proper identification, but still gave her the creeps. She was home with her young son and the man kept implying that he'd like to come inside, fumbling around with his clipboard awkwardly as if he wasn't able to write without having a place to sit down. She said his eyes were darting everywhere, he was standing too close, and she just generally got a terrible feeling about him.

After he left (whew!) she looked online at the local sex offender registry and sure enough, there was the guy's mug, but under a different name. Turns out he lives in her neighborhood. He had gotten the job working for the US government under an alias and had passed his background check. He had multiple offenses listed on the website. This mom had been in the habit of checking this list periodically ever since her nephew was born and then later her son. She wanted to be on the lookout for suspicious Sunday school teachers, boy scout leaders, or baseball coaches. Good idea, huh?

I hate to admit that until today, it had never even occurred to me to do that, to familiarize myself with the people in my area who are known to be dangerous to children. So I looked today and guess what. I know one of the people. Not well, and she has nothing to do with my littles, but she's a mom and a volunteer at the high school (!) and her offense is sexual misconduct with a minor. She got four years, 2 years suspended and the other 2 on probation. Holy Schnikies, I could not believe it.
Steve recognized about half the faces on the list from the emergency room. We were stunned.

It just made me think. I need to stay on my top of this stuff. How did I not think of it before? I've got a child with a disability who is not very verbal and who trusts and loves everyone. God will not protect him. I tried that whole "hedge of protection" prayer before. It doesn't work, at least not for us. So we have to be the ones on the lookout.

Still so much to learn

2010-05-13T08:19:00.000-07:00

I enjoy an alcoholic beverage from time to time. This is nothing new. I have felt this way for two complete decades. You'd think, then, that I'd have taken the time to educate myself about how to properly stock a bar, which glasses go with what, how to mix a few favorite cocktails.

But, no. For some reason, I am only just now realizing that I think it would be fun to be sort of an expert mixologist. Just for that occasion when it might come in handy, which isn't really that often, but still. I mean, we only decorate for Christmas once a year, but you outta see the haul of crap we drag out for that. So for that few times a year when we want to have people over and serve up the fun, why not learn to do it with class, style, and excellence? More than once I have been embarrassed by our lack of proper stuff with which to do so.

Gotta go get reading about it. Next time you come over, expect some yum.

Parenthood - "Brilliant" Grandma's Rollercoaster Story

2010-04-30T21:00:00.000-07:00

Shortly after this scene in the movie "Parenthood", this couple is watching helplessly as their toddler runs up on stage during their daughter's play at school and ruins the scene. Some of the other parents are mad, but most are laughing. As it's all happening, Gil (the dad) starts hearing the roller coaster on the tracks and feels nauseous while his wife is giggling gleefully. Suddenly, Gil just makes a decision to loosen up already and find the humor in the situation. I mean, it's a grade school play for crying out loud, and his little boy is adorable.

I was thinking about all of this tonight at the boys' first t-ball game. It was a roller coaster, to say the least. Jude was all over the damn place. But he was cute and people seemed to be enjoying his antics. I felt a little sick and panicked about it for the first inning or so when I suddenly remembered something important: this is five-year-old t-ball. No lives are at stake here. It's supposed to be fun. No one is in a twist about it, so why should I be? They're cute. It all goes by so fast. Enjoy it, I told myself. So I did.

Preschool Field Trip to the Dairy Farm with Simon

2010-04-28T15:17:00.000-07:00

Franklin

2010-04-28T07:24:00.000-07:00

Simon's watching Franklin this morning. You know, the turtle who can tie his shoes and count by twos? He's kind of whiney and annoying, to me anyway. Apparently to Simon too, because we were a few minutes into it when he said, "I don't like Franklin. Let's turn it off." Good boy.

I have a friend who calls the turtle "Fucklin". It's not nice, but dirty words make me giggle, so I like it.

Praying with Lior

2010-04-25T12:32:00.000-07:00

I watched this documentary a couple of nights ago with my daughter, Chloe. It was really beautiful. To sum up, Lior Liebling is a Jewish boy with Down syndrome preparing for his Bar Mitzvah. He attends Orthodox Jewish Day School, his father and mother, who passed away when he was six, both rabbis. So, he's one of those Moses Jews, as opposed to a Bagel Jew (that's Anne Lamott's, not mine), and he and his family take this rite of passage very seriously.

What I loved about the movie:

-the way Lior's community at school and his synogogue take him in and love him for who he is, off-key davening and all. They embrace him completely.

-the relationship between Lior and his siblings. Even his younger sister, who is annoyed by the fact that even though she is the baby of the family and therefore should receive the attention usually associated with it, Lior often gets more because of his disability. His older brother, Yoni, loves Lior so much that he will choose where to go to college and where to live out his life based on proximity to him. It's not out of pity or duty; it's pure adoration.

-the Bar Mitzvah itself it a tear-jerker. If you can watch it and not cry, I fear you have no soul. Lior must be familiar with many Hebrew prayers in order to fully participate in the ceremony and he also must give a speech in his own words. His father helped him for months ahead of time by asking Lior leading questions and then writing down what he said so that Lior could give his speech by reading back his responses.
Clearly, his father was nervous about how the day would go and even Lior's mother before her death had written about overhearing someone saying "I wonder what his Bar Mitzvah will be like" upon learning of his Down syndrome and the sting of that comment. The whole movie builds to the the big day, and by gosh, Lior delivers!

On the day of Lior's Bar Mitzvah, he is literally beaming. It is the day he has been looking forward to for so long. He is surrounded by family and friends and the memory of his mother, who would have been so proud of him.

The movie doesn't gloss over the difficulties of Lior's disability either for himself personally and academically or for his family, teachers and classmates. But Lior, an undeniable charmer, endears himself to all when he gives a hug, flashes a grin, cracks a joke and offers a loud, off-key prayer to his God.

And Yet...

2010-04-15T09:35:00.000-07:00

As I sit outside, the breeze gently blowing and playing an ethereal song on the wind chime, the trees and flowers blooming, and I'm watching my two boys play (the ones I prayed for), I feel so thankful. But, to whom? There is still that unshakable sense that something is behind it all. Dangit.

Religulous

2010-04-15T06:55:00.000-07:00

So I watched this movie yesterday on the recommendation of a friend. He was right; I did like it, but it's not for everyone.

Where to start? Bill Maher did seem unnecessarily mean to some of the people he featured in his documentary about religion, and this didn't surprise me. I've watched his show "Real Time" on HBO, and whenever the topic comes up, he seems to have a giant chip on his shoulder about it. I'm not sure why. He says his mother is Jewish and his father was Catholic. He was raised as a Catholic for 13 years, but then the family quit attending church because his father became disgruntled with the Catholic church's stance against birth control. He claims that as late as 40 years old, he was still praying to God. Now, he says he is not an atheist, but a confirmed doubter. He is suspect of all religions, not just picking on the Christians, and even classifies religions people as having a neurological disorder.

Maher did feature a couple of religious people in his film, a Catholic priest, Francis Collins (part of the Human Genome Project and an evangelical Christian) who didn't come off as completely nuts, but the majority of the people he talked with or who he featured in archived videos (Ted Haggard, Jimmy Swaggart, Jim Bakker) were some of the worst examples of the fallen. So it wasn't exactly fair.

Also, while he picked on the Christians, Muslims, Mormons, and at least one cult I can remember, he left the Buddhists and Hindus alone. Why? Just ran out of time?
Maybe because they are peaceful (as far as I know) and not involved in all the killing over the years that the others have, in the name of God.

Anyway, having grown up in the church my entire life, I found much of the movie embarrassing and sad. I did laugh at times at the absurdity of it all, but I'm afraid it hit just too, too close to home. Bill makes a good point when he calls out the hyprocrisy of those who call other people's faith "crazy" when their own belief system also requires the same level of trust in supernatural things that can never be proven as fact. All of it requires faith, even atheism.

Anyway, interesting and thought provoking, for sure.

Nonsense

2010-04-11T17:17:00.000-07:00

At dinner tonight I was telling Steve and Jake about an article I had read in a Christian publication about the hope that Christians have because of Easter. Because Jesus conquered death, we have the hope of being reunited with our loved ones beyond the grave, the article said. In fact, it went on, when a Christian loses loved ones, it is no different than saying goodbye to them at the airport.

Yeah. Just let that settle in for a moment.

Jake said, "Well, maybe if you're saying goodbye at the airport to someone who is going somewhere never to return." And I said, "But are they still alive? Because if they are, you can still talk on the phone and send emails and continue your relationship. That person still exists as part of the world that you both still share."

So then Jake said, "Okay. Death is like saying goodbye at the airport if you know for sure that the plane is going to crash and burn with no survivors."

Yep.

Easter

2010-04-05T15:11:00.000-07:00

Yesterday was great. We have been setting records lately with warm temperatures and sunshine in a time of year that is usually cold and rainy. Global warming! El Nino! Sign of the Apocolypse! Anyway, we were able to have our Easter egg hunt outside and it was beautiful. We've got candy coming out of every orifice (ew!) and I'm well on my way to looking like Kirstie Alley, except not as hot.

Chloe sang at church yesterday with Steve, which was really fun for them. They sounded great together! Afterward, Jake and I sat in the back poking fun at stuff and coming up with this whole nightclub act for Steve called "Lady Steve and the Worship Team". Steve will dress in drag in sing "praise & worship" songs in falsetto backed up by the band from church. What do you think? You'd want to see that, right?

Our pastor's message yesterday was called "The Door" and it was a giant metaphor about how Jesus is the door you need to walk through to access God, to receive redemption, to find your true identity as God's own, to learn to love without limits, to find freedom from enslavement to addictions, etc etc. There was an audience participation time where we were all supposed to get up and literally walk through one of the doors that were labeled all these different things. As he was describing how if we could just get up and in humility and faith, walk through one of the doors, the same power that brought Jesus back from the grave could work a miracle in our lives this very morning. I didn't walk through a door. I just couldn't bring myself to do it.

Sensing hesitancy, he mentioned that he knew there were cynics among us who he hoped would just give it a chance. Cynic isn't the right word, though. A cynic is someone who doubts people's sincerity and thinks people only do stuff out in their own best interest. I don't doubt our pastor's sincerity at all. I think he believes that walking through a door could really touch someone's heart and be a turning point. And it probably was for some people. I saw many tears. I just think "skeptic" is a better word than cynic. I know that it is possible to be swept up in the emotion of the music and the group dynamic of a service like that. I mean, ever been to church camp?? But that doesn't mean that God has shown up.
I felt nothing yesterday. I don't know whether I have just become numb to all of it, or whether I've finally come to my senses.

I guess I need to think about all of this some more while eating another one of those Reese's Eggs. MMmmmmm.

My Very Own Jehovah's Witnesses

2010-03-31T11:28:00.000-07:00

It will come as no surprise to anyone who knows me or who has been reading here for a while that I am a longtime Christian who struggles with profound doubt. In fact, recently I have been so plagued with feelings of doubt that I was ready to curl up with Richard Dawkins, Sam Harris, and Christopher Hitchens and write the whole thing off.

Really. I'm not kidding. I got a Kindle by Amazon for Christmas and I had been downloading atheist books left and right, ready to leave my faith altogether. It seemed the tidiest conclusion to my lifelong struggle to believe. I want to believe. Really, in my situation it would be far easier to believe. My entire extended family are believers, my husband and two older children, and if I could truly believe that there is a place called heaven where I will see Seth again, well. That would be nice, wouldn't it?

And yet. The older I get, the more remote God seems to me. The less real. The more he seems like a figment of our collective imagination. I don't have a good explanation for the biological complexity of life or for meaning and purpose to it all, and that bothers me too. But even if there were one, I wouldn't be able to understand it. I'm an English major. Big words that smack of math and science make my eyes roll back in my head just shortly before I start convulsing.

So I continue going to church, praying to a God I don't believe is there (or if he/she/it is there, doesn't care about me,) hoping for some revelation or epiphany that never seems to come. I have finally arrived at a place of numbness over the last several years that actually feels pretty good. It's better than hurting all the time, anyway.

So in the midst of my worst of many spiritual and existential crises, who should show up at my door a few weeks ago but a couple of Jehovah's Witnesses, out making their rounds. I have never invited them in before, telling them something about how they were preaching to the choir before closing the door, but this day I thought, "Oh hell. Why not?"
So Sharon and her granddaughter Melissa have been paying me visits since then, four times now. They bring me their JW propoganda and we talk about God and I tell them how I'm not going to come to their church. And still they come. They're actually just as nice as they can be, and I enjoy our conversations. At some point, I know they'll give up on me, but it's been nice to have someone care enough to persist. The pastor at my own church, a friend, knows about my struggles and appears too busy or apathetic to engage in a real conversation about it.

I am in limbo, but have lost the ability to even feel upset about it anymore. If it's all true and God is real and Jesus is God and he's coming back, I hope he doesn't come later this afternoon, because I do NOT have it all worked out just yet.

Spring Break

2010-03-30T09:11:00.000-07:00

Last week our kids were on spring break, so we all piled into our Kia
Borrego of Love and drove 1000 miles to Florida. I know, it sounds
crazy, but we had a lot of fun. Allow me to relive the high points of
the trip here with you, along with some photographic documentation of
the mirth and merriment that is Disney...followed by the mirth and
merriment that is the Gulf of Mexico.

First of all, we don't drive straight through. We've tried that. It's
just too punishing to drive the monotonous interstate for that many
hours while everyone else is snoozing away, snoring and drooling. So
we stopped overnight both ways. The only hassle with that is that you
have to unpack all your stuff more times than you'd like to. In our
case, because we drive the relatively small Kia Borrego of Love with
six people crammed into it, we have to strap our stuff onto the top.
However, have I explained the advantages of the Borrego? First of all,
it was a brand new car for not much $$. We have 100,000 mile bumper
to bumper warranty and excellent gas mileage. More about this later.

Days 1, 2, and 3 of our trip were spent at Disneyworld in Orlando. We
stayed in the Fort Wilderness Cabins because, did I mention there are
six of us? You can't stay anywhere with six people without getting 2
rooms unless you stay in a cabin, where the maximum capacity happens
to be six. Although I think we could have put a short seventh person
on the couch. Anyway, it was fine. One thought looking back, though.
Steve had read online that some of the cabins can be a long walk from
the bus stops which take you to the different parks from your resort.
We were renting strollers while at the parks for when the boys pooped
out, but after we got back we wouldn't have them and he was
envisioning us carrying 40 lb. of dead weight sleeping boys for like a
mile or something. So, we played the disabilities card. We had also
read online that if you are a guest with a disability, Disney would
afford you certain perks like cabins closer to bus stops and such. So
I called and asked for that. Done, they said. I felt guilty about it,
though, because, really? Jude is no less mobile than any little
boy. He has no less stamina and in fact, doesn't even qualify for
physical therapy because he just doesn't have deficits in that area.
So asking for anything special based on that seemed wrong. We got our
come-uppin's once we got to the resort and walked to our cabin. First
of all, they missed the part about how we wanted one close to the bus
stop and only heard "handicap accessible" so they gave us a cabin
waaaaay far away from the bus stop, but by golly it had ramps and
extra wide doorways and a super tall toilet and grab bars and a shower
that you could wheel right into/no bath tub. We didn't need any of
that stuff, and in fact really coulda used a bath tub with the two
five-year-olds who hate showers and we ended up walking just as far.
Good news is, the boys were troopers and were still going strong and
midnight when we got back from Magic Kingdom and walked the whole day
with no complaints. Anyway, the moral of the story is that I won't
ask for any special favors again just based on the extra chromo unless
we really need it. It felt slimy and I hated it.

Day 1 was typical Florida monsoon type weather. Buckets of water
pouring out of the sky, so much so that the drainage on the walkways
couldn't keep up and we were walking in places through several inches
of water. It was cold and wet and miserable. But, we were at freakin
Disney, so we put on our Mickey Mouse ponchos and bravely forged
ahead!
We had planned to go to Animal Kingdom that day, but when we saw the
forecast we decided on Epcot because it's pretty much all indoor stuff
there in those pavilion thingys. It was a good choice because some
grandpa I was talking to in line for the Small World ride at Magic
Kingdom the next day said that they had been at Animal Kingdom and
that there was nowhere to really get out under anything from the rain
and that they were in hell all day. Plus, I got to see my
objectophile husband, the Space Ball. Oh, you don't know that story?
Well, a while back I saw a story on Good Morning America about
objectophiles--people who have sexual attractions toward objects:
bridges, fences, statues, that sort of thing. One woman, Erica
Eiffel, is "married" to the Eiffel Tower and legally changed her name
to reflect that. It's a real thing, I swear. Google it. So, I started
saying that I was going to get married to the Epcot Ball and change my
name to Beth Epcot. Chloe took a picture of me looking at it with
wonder and delight when we first arrived there that she and I thought
was pretty funny, but Steve is a little jealous, I think. I mean, how
can you compete with that?

Next day was Magic Kingdom, which was crazy crowded, but we had a
great time. It's my favorite. I never get tired of that place. We
went there on our honeymoon, for cryin out loud. It is, well, magic.
Love it. Weather was great, too.

Next day was Hollywood Studios, formerly Disney MGM, and the part that
made that day awesome, besides another beautiful day, was the fact
that we spent the day with my VBF Stacey's parents, who had driven
over from their home in The Villages, FL to be with us. Good times!
It was so great to see them and hang out for the day. Rode Tower of
Terror (my favorite) several times. Even Simon! And rode Rock N
Roller Coaster with Chloe for the first time. Cool ride! Jude loved
the shows and was doing some of his signature moves for the people
when we went to Disney Playhouse Live. So cute.

Next day we drove to Longboat Key and spent a few days getting
sunburned and building sandcastles. Just beautiful. We had never
been there before, but I would definitely go back and stay longer!

On our way home, we stayed overnight in Atlanta where we met our
friends Tim and Michelle. Steve met them in Bible college a hundred
years ago. Tim sang in our wedding and we visited them while on our
honeymoon because they lived in FL at the time. Since then, we've
visited with them a handful of times. They came up for Steve's med
school graduation and came and spent a day crying with us shortly
after Seth died. Love them.
We hadn't seen them in 10 years. They looked almost exactly the same,
except Tim's hair has gone white. They have never had kids, but
they've got two little dogs that they think of as their babies. They
have been very successful in the insurance business and have a very
expensive condo in the Buckhead area, and 2 very, very nice cars. I
think Tim was appalled that his doctor friend is driving a Kia
Borrego. He asked us if it was a rental. Please, please tell me this
terd is a rental, he seemed to be saying. Heh. Tim's really into his
stuff. After taking a look around at our house when they visited us
for Steve's med school graduation, Tim predicted that now that Steve
was a doctor, we would no longer be satisfied with "crap". Funny.

The kids did great with the long drives. We had lots of snacks and
DVDs, Disney movies, of course, and a few stops along the way to keep
them entertained. In all it was a great trip!

Dilemmas and Ponderings

2010-03-17T11:43:00.000-07:00

Kindergarten is looming for the littles. Decisions need to be made.
Ack!

I got an email from the special education teacher at our neighborhood school today outlining a possible schedule for Jude next year should we decide to have him attend kindergarten there. It looked pretty good, although there seemed to be the possibility of his spending a good chunk of his day in the resource room with no other kids and one adult. As if school isn't already boring enough.
I mean, the schedule said he could be in the classroom or in resource, so maybe we just need to speak up and say at the IEP meeting that we want him with his peers for as much time as possible? I do realize that he will need specialized, slow motion instruction on so much of the curriculum, but I also feel like his happiness and social skills are as much a part of the kindergarten experience as the academics.

And too, Jude's just 5, so I am by no means writing off his academic prowess. But am I concerned by what I see thus far? Um, yeah.
When I read or hear about other kids ( I know I shouldn't compare, but who doesn't? Let's be honest) with Down syndrome about his same age, I am struck by how much more most of them seem to be talking and grasping some of the basic preschool concepts. Jude doesn't recognize his ABC's or numbers. I mean, none of them. Not that he's telling us anyway. He may or may not know about 3 of his primary colors. Sometimes I think he's guessing. He doesn't seem to know shapes, although yesterday he drew a circle after I did on the dry erase board.

On a positive note, he can dress and undress himself, brush his own teeth, follows routine well, is adaptable and generally happy, pleasant, easy to get along with. His fine and gross motor skills seem pretty typical, though we are still trying to get him to pedal a bike. He is finally starting to understand the steering part.

I just don't know. I just want him to be included and happy. I don't want him to have to sit alone in a room with an aid getting drilled on flashcards all day and worksheets when academics are just never going to be his strong suit. On the other hand, I do want Jude to achieve academically to his potential. I would love for him to learn how to read and write and be able to navigate his way through the world as independantly as possible. That will mean some hard work on all of our parts, including his. It may not always be pleasant. Maybe sitting in a room with few distractions and guided practice is exactly what he needs.

And here we are, springtime, and it's time for sports sign-ups. The boys are old enough to play t-ball now. Jake did. Simon wants to. Jude is able to play on a local "Dream Team" for kids with disabilities, and he probably will, but do I go ahead and sign him up for the non "special" team, too? He could probably do alright, with a lot of help, but he doesn't really give a rip either way and is it just me trying to make a point about inclusion? Is it more for me than for him? Or am I just trying to avoid the embarrassment of him running off the field constantly and picking dandelions, etc. I mean, lots of little kids do that stuff, but it seems so much more magnified with Jude. Like people are watching for it. I don't want him (or me) on display. Is it all just my imagination? Who am I really trying to protect here?

Blogging about Blogging

2010-03-11T06:12:00.000-08:00

One of my favorite tv shows, House, was about a blogger this week. This character couldn't sneeze with blogging about it, which was causing tension in her marriage because her husband didn't enjoy the fact that their every interaction was fodder for the blog, entertainment for strangers. He threatened it was the blog or him. But she was so addicted to the feedback and to the feeling of her life being important to people that she couldn't (wouldn't) stop.

Blogging is sort of weird that way. I'm not sure why I do it sometimes. I think in the beginning and even now, it serves as a creative outlet, an online confessional, and a means to combat the isolation of being at home with small children and living out in the country. It has also been a great way to meet other moms, other bloggers, who parent a child with Down syndrome.

But my blog also frustrates me at times. I admit to watching the counter, checking obsessively for comments after I've posted something I hope will garner some feedback. I sometimes experience "blog envy" when I see the traffic and hundreds of comments that other blogs attract. However, I don't work at it. I don't join networks. I don't post daily or even often.
I don't visit a lot of other blogs and leave comments. I'm a lazy and unambitious blogger.

I'm also a cautious blogger. I don't use our last names or disclose our exact location, though that information might be easy enough to find out. I don't know how, but it's probably out there. I don't share every little private interaction that occurs here at home or tell everything that is on my mind or every person I'm mad at or every success or failure or pondering. For one thing, I have teenagers who deserve some degree of privacy. There are all kinds of things I'd love to dish about here on the ol' blog about raising these kids but it just wouldn't be fair to them to put that stuff out here on the internets.
I also have thoughts about our church, about God, about myself, even about Down syndrome that I just wouldn't write down anywhere. Some stuff just has to stay inside of my own head, as much as I'd just love to purge it here sometimes.

Some people think of their blog as a diary, but a diary is meant just for one's self. A blog, or this blog anyway, is public. And because anyone at anytime could read what I've written here, I do limit myself as to what I will share. It's frustrating, but necessary. It's staged. The blog only sees what I want it to see. There is plenty of good, bad, and ugly which never makes it here. And in that way, the blog seems sort of fake, sort
of an edited version of the real story. Everything I write here is honest and real, but often toned down and definitely one-sided from my tainted perspective.

Choice

2010-02-25T13:24:00.000-08:00

Gosh, could there be a more controversial subject in comtemporary culture than abortion? Personally, I'm not a facebook fan of abortion. I'm just not. I don't understand how it's a good option in most any situation. I feel like there's always contraception if you don't want to be pregnant and there is adoption if you find yourself pregnant and didn't want to be. I can imagine some rare exceptions to that. For example, if a woman were raped and became pregnant as a result. Of if the mom's life were endangered. Or if a woman were abducted by aliens or Satan himself and impregnated with the goal of a subversive takeover of all mankind. Then, yes. Abortion might be something to discuss.

When I get to fishing around on the internet, reading things like this article from last week's Washington Post written by Timothy Shriver about the use of the so-called r-word, and then make the supremely unwise decision to continue on the comments section ( why do I insist on torturing myself?), I get all in a funk afterwards at the reality of some people's attitude toward those with disability, particularly Down syndrome.

Why pick on Down syndrome? Because it is preventable. Well, sort of. I don't mean to say that there is any vitamin or magic pill you can take to prevent that twenty-first chromosome from tripling during development. What I mean is that with prenatal testing, parents are able to know well within the first trimester if this particular genetic anamoly has taken place in the development of their baby. If it has, they are easily within the window of a safe and legal abortion. And many, many people (some say as many of 90% of those who receive a prenatal diagnosis of Ds do choose to terminate the pregnancy, though one of my friends refers to this as "the boy who cried statistics" and I too am skeptical of this percentage) don't want to bring a child with Down sydrome into the world. And it's more than just the idea that they don't want to parent a child with disabilities, though I would think that factors in. It's the objection to bringing a person into being who will undoubtedly need more than the average amount of help in navigating his or her way through life. They will have some level of dependance on others for as long as they live just to get along. They can know this before the child draws that first breath. Many deem that as a life not worth living and feel the best, most humane and responsible thing to do in that situation is to terminate. I can imagine that this decision comes with agony and grief and heartbreak. I actually understand it and sympathize with the decision.

I just disagree that the life of an individual with a developmental disability is without value, and it's not just because of God. I get the feeling that people assume anyone who has a kid with Down syndrome must be one of those nutjob right-wing Christian types. The doctor who delivered Jude told me about how when he worked in a more progressive community, most women would choose abortion after receiving news about Down syndrome. Here in the Bible Belt, he said, not so much. Buncha crazies.

So, just for fun, let's pretend that there is no God. Still, everything that makes a human life worthwhile: relationships, appreciation of art and beauty, fulfillment of goals and aspirations and personal growth; all those things are still absolutely possible for most all individuals with Down syndrome. So why snuff that life out just because it is not the typical human experience? It is right to think that the life of a person with a disability will bring some challenges that might not otherwise have been part of the program. So? Reason enough to end it? It has been said that a society can be judged by how it treats its weakest members. Are we becoming a society that discards life based on perceived differences or weaknesses?

In our case, we didn't know Jude had Down syndrome, not for sure, until he was four days old. We didn't do any prenatal testing. We had already lost one child and went to extraordinary measures to conceive our twins. There was no way we were going to take any risks in order to obtain information that wouldn't change anything for us. Even if we had learned that Jude (then known simply as "Twin B") had Down syndrome, would we have attempted to terminate that pregancy while saving the other? Not in a million years.

I guess there will never be a meeting of the minds on this specific issue.
Those who choose to terminate based on a prenatal diagnosis of Down syndrome feel they are doing what is right for the baby, for themselves, for the extended family, the community, and the world at large. Those who don't choose to terminate based on that same information or who choose not to obtain the information feel that they are doing what is right, too.

I was so sure I knew the answer until I asked the question. And now I'm more confused than ever.

2010-02-24T07:58:00.000-08:00

A couple of months ago at Jude's annual case conference at school, the director of the special needs co-op suggested that Steve and I look into a couple of different schools for Jude to begin kindergarten next year.

I've written about the choices before but am too lazy to provide links.
Basically to sum up, there are two options. First is our own neighborhood school where there is not a particular program for special needs kids, but each child is provided with supports specific to him or her per the IEP and they make their way through the school in as much of a typical way as possible. They blend, but with help as needed.

The other school is in a different district, but still in our county and part of the co-op. For whatever reason (I have a couple of theories that I'll share momentarily; keep your shirt on) every child in the last five or so years with Down syndrome and quite a few with other various disabilities in our district have chosen to go to the other school. It has a program. The kids with disabilities of all sizes and shapes have their own hallway which is home base, and then they are mainstreamed into the grade level classes. Later, the in middle school and high school, this program feeds into a vocational and life skills program.

Here is my emotional gut reaction to having visited both places over the last week and meeting with the learning disabilities teachers from both.
First, LOVE both of the teachers. Would love for Jude to work with either of them, so that's a non-issue. The Other School (heretofore in this post known as OS) feels really warm and safe and lovey and cozy and fuzzy. It feels like a nice environment for Jude to be in, but maybe has just a hint of "the special kids have a special hall where they have their special classroom and their own special teachers." Not that ANY of that is bad. I'm just saying that there's something about the program that makes it feels set apart.

At our own school, there is no special hallway at all. The kids are more integrated into the school without a sense of their own place or identity. They are just one of a large crowd of snot-nosed elementary kids. They are not fed to the wolves by any means. They have all the same supports as the kids at the OS, but it's not programmy or warm and fuzzy. It feels a little less safe, a little more institutional and school-y and less homey, but more like reality. I mean, in real life, people with disabilities don't all huddle together in restaurants or at their places of work or at in their churches or anywhere else (besides maybe Special Olympics or Buddy Walks). The hope is that they will be able to make their way in the world being in the minority of individuals who happen to have a disability.

Now, why have most all families ended sending their kids to the OS, sometimes riding the bus for as much as an hour to get there when our own school is able and willing and actually more than happy (and obligated by law, by the way) to support children with disabilities to ensure success?
Well, I guess the former principal at our school used to not be very disabilities friendly. That's what I've heard. By that I guess they mean that if classroom teachers or parents of typical kids complained about the presence of children with disabilities among them, he wasn't much of an advocate. But the new principal is a former special education teacher herself, so that has most likely changed, wouldn't you think?
Also, I think people just follow the herd sometimes. If most everyone in front of you goes to the left or to the right, it's easy to assume they know something you don't know and that they have already investigated all the options and must have chosen that route for a reason and so it's easy just to follow.
But guess what? The teacher at our school told us yesterday that we were the first parents she had ever had call her and ask to sit down and discuss the possibilities. The FIRST! Can you believe it? Also, our own school does not currently have a vocational or lifeskills program, but why would they? They don't have students who need it because they all go to the OS! Middle school is a long way off for us. Maybe things will change. And if they don't, we'll jump off that bridge when we come to it.

So, whereas a coupla weeks ago I thought we'd almost surely be sending Jude to the OS, I'm starting to think he may just be going to school right here in our own neck of the woods. It's so hard to imagine our little squish of love going to kindergarten anywhere in less than a year, and believe me, it's tempting to choose the well traveled path. How will he make friends? Our school may push him more academically, but will he be happy? No easy answers.

Lost

2010-02-18T08:24:00.000-08:00

I used to know just exactly how I felt about so many things. I was so confident about my rightness in these things. Lately, I'm just feeling so confused and lost.

Here's one thing: I get nearly immobilized at times with my fear of people's judgment of me. I used to not care, and I miss that person. I think about what people must think of me because of Seth's death, because I have 4 children, because I have a child with Down syndrome, because I choose to stay at home, because I send my kids to public school, because I identify as Christian, because, because, because.
In reality, people probably aren't thinking about me at all. They are thinking of themselves. Except for when they are thinking about me. Except for those people in the world who I know exist because they leave hateful comments on articles on the internet expressing their true feelings about having to share the Earth with people like Jude who have Down syndrome. Why in this day of prenatal testing would someone bring a child like that into the world? It's cruel and selfish and it's a burden on society. They don't want Jude sitting in the classroom with their own child, slowing things down, complicating things.

I know better. I know that I'm not cruel and that Jude's life could be characterized as anything but suffering. I may be selfish. I did want more children after we lost Seth. I was trying to fill a hole in my heart that I thought more children might fill.

And then there's Seth and the way he died. That happened because of a momentary lapse in supervision, obviously. It could have happened to anyone, but it didn't. It happened to me. Epic fail. Try living with that. It's no picnic.

Four children. Did you know that there are people who look upon anyone with more than the typical 2.5 children in America with utter disdain? That we are "breeders", just clogging up the system with all our spawn. Add to that the fact that we dared to procreate past the age of 35 and, well. We're just outright reckless.

And as for the Christians. Well, we're all just crazy. Delusional. Place our hopes in a fairy tale. Worse than that, our religion is responsible for wars and we are hypocrites. We claim to follow Christ, but as a group we don't give generously, we don't care for the widows and orphans and prisoners and hungry and least among us, which are all things Jesus said to do. Some do these things, but so do a lot of non-believers. Marriages fail at just as high a rate among evangelical Christians as they do any other segment of society, depression just as prevalent. Prisons are filled with convicted criminals who claim to be believers. How does going through life with faith cause anything to be better or different?

I know how this must all sound. I told ya I'm feeling lost. However ironically, I'm sleeping better, exercising daily, and looking forward to things again. So go figure.

Oh, Sarah.

2010-02-10T23:43:00.000-08:00

Sarah's at it again, makin' crazy statements while she's on the t.v. and lookin' and soundin' like she doesn't know what the hell she's talkin' about!
Sayin' things like "How's that hopey-changey thing workin' out for ya?" and claimin' that Rush Limbaugh was just "usin' satire" and such. She's just somethin', isn't she?

If you don't know, there's been a bit of a buzz this past week about President Obama's Chief of Staff, Rahm Emmanuel, making a comment in a private meeting about some adversaries of his (Republicans, ew!) were "fucking retards". There it is. That's what he said. Sarah didn't like it. She said it was insensitive and wrong and terrible and he should be fired. But then on Rush Limbaugh's conservative radio show when Rush said we shouldn't get upset about calling people who are retarded, retarded and went on to describe a retard summit taking place at the White House, Sarah said that was a real knee-slapper. Satire, she said!
Hmmmmm.
Hey, Sarah. You can't have it both ways. Either it's funny or it's not.
Either it's okay to say it, or it isn't. God love ya, I know you're in way over your head and you're new to all this disability stuff. But, pssst. Move in closer and I'll tell you a secret: it's not okay! It's not funny, not even from a Republican!

If you are a person who doesn't understand what all the fuss is about and thinks parents of kids with disabilities are being giant baby whinerpants when we ask that you pretty please refrain from saying things are "retarded", or that people are "retards" or "tards" because it hurts us, maybe you could take a moment to go read this.

On Having the Last Word

2010-02-05T12:31:00.000-08:00

The saga continues with the piano teacher, or it would, if I'd have let myself call him back or send him a rebuttal note in accordance with my first and entirely wrong inclination.

I called him the next morning after he made the baby Jesus cry by yelling and cursing at a child in God's holy sanctuary. Thank goodness I got his voicemail. I was able to leave a cordial message about how sorry I was that I had made the 6:00/6:30 mistake and about how I understood where he was coming from on not being able to adjust Chloe's lessons around choir but that choir is not only an extracurricular, but also a graded class and that most always we know about rehearsals in advance, but occasionally one sneaks up and we would need some flexibility and that I was sorry that wasn't going to work out. I thanked him for his time and told him we'd see him around town. Whew. Over, I thought.

So then later that evening, Crankypants left a message on my voicemail. Just couldn't let it go, could he? He too started out all nicey-nice and that he understands mistakes are made and said he knew it wasn't our fault because we are "victims of the system". He said that Chloe had plenty of talent but lacked the dedication it takes to progress from this point. He went on to say that piano has to be priority and that show choir cannot be her life. He said that often a parent will step up and make it known to the basketball coach or choir director or what have you, that piano is a priority and that lessons will not be missed and the coach/director will just have to deal with it. He was just sayin'.

He kept rambling on and on, his speech getting more and more pressured until finally he ran out of time and my voicemail cut him off.

Now do you think I wanted to call him back and thank him for his advice on parenting choices and for his implication that we are mindless sheep, just allowing ourselves to get sucked into the system of our child's activities without putting any priority on what really matters? Oh, I sure did. Because Crankypants doesn't even have any kids, let alone four of them with ages, interests, and needs as diverse as they come.

I penned him a note so that I could have the last word, I wouldn't be interrupted and because I'm a coward that way. It was cathartic to write it, but when I was done, I read back over it and then threw it away. I'll never get him to see things from my perspective, nor will I see them from his. He'll always think piano trumps all; I have baggage from my own treacherous years of piano lessons with a mean teacher who took every opportunity to humiliate me. The truth is, Chloe does prefer choir, and that's just fine by us. The other truth is, I was expecting Crankypants to adjust his schedule for a couple of months of show choir season to accomodate us, and maybe that was too much to ask. And, the final other truth is, I truly did flake out on the lesson time, appearing to disrepect the value of his time.

Better judgment tells me I should allow Crankypants to have the last word on this one.

He Said What?

2010-02-02T20:38:00.000-08:00

Chloe takes piano lessons from this cranky old guy who apparently is about the only guy in town who teaches piano anymore. Six years ago when we moved here, we asked around about it and his name was the only one that ever came up.

He's really, really talented. He's on staff at a church in town as their music director/pipe organist (yeah, they still have those things!) and she gets to take her lessons in this beautiful old church with stained glass windows and play on a grand piano. But he's super snarky. I mean, perfectionist doesn't even begin to adaquately describe it. I like him, or I used to.

Chloe took lessons from him for a coupla years and then got really busy with other stuff and disinterested and quit. I think he's been harboring a grudge all since then. So probably 2 months ago, she said she'd like to take piano again. And we said, "Are you sure? You know what you're getting yourself into this time. It's work. It takes dedication and discipline and the payoff is huge, but it doesn't happen overnight or anywhere even close to it." "Yes, yes" she said. So we called Old Fart, he agreed to take her back and we were off.

By lesson #3, he had her in tears. Granted, she wasn't as prepared as she could've been, but c'mon. We said, "Are you sure? We can look for someone else?" "No, no," she said, "I can't quit on him again!" So we kept going, but we sat up closer behind as if to say, "Watch it, Old Man."

We've been having some trouble getting to lessons the last few weeks because of show choir. Chloe has these ridiculous rehearsals that are for hours every night and so we had asked him if he could work her in elsewhere. He seemed accomodating. Evidently though we didn't give him enough notice and he bore a further grudge.
Tonight was the last straw. He had agreed to meet her at 6:00; I misunderstood and thought it was 6:30. I stayed in the car with the boys (me: strep throat and in my jammies, boys: 5th Disease, remember?), so she walked into his fury all alone.
He yelled at her, told her he was sick and tired of being taken advantage of and that he would not be 2nd priority to choir and that if we couldn't treat him better than this, well then to hell with it! In those words! In church and everything!
As far as I know, the Jesus paintings and statues didn't start crying tear drops of blood or anything, but Chloe's eyes were like saucers when she came out and she was shaking.

So, we're done.

He may have thought we were taking advantage or giving him the runaround or that we were flakes or whatever. He should have called and had a civil conversation with Steve or me about it. That's what grown-ups do.
He yelled at cursed at a child.
He threw a little temper tantrum.
This one gets filed under Adults Behaving Badly.

Update from Infirmary on the Tundra

2010-02-02T05:52:00.000-08:00

The boys have had Fifth Disease, which isn't a big deal, but it lasts longer than you want it to and makes for crankiness and quarantine. In the meantime, I think I may have strep throat again for the second time this winter. I can't know for sure without going in for a strep test, but judging by the fever and razor blades in my throat and my vast experience with this ailment, I'd say that's what it is.
So. We're holed up in the house, healing and watching lots of television.
I think maybe by the end of the week, we'll be back to real world things like preschool and grocery shopping.

A few days ago, I saw Rosie O' Donnell on the Oprah show. She was talking about her split with Kelly and about her new radio show and her book and her fall out with Barbara Walters and The View. She also said she has a new girlfriend, an artist who is a single mom of 6 kids, one of whom has Down syndrome. I'm seeing Buddy Walks in her future, aren't you? It will be kind of cool to have Rosie as a vocal force in the world for Down syndrome. I mean, say what you want about her, but she is kind of hard to miss. She puts herself out there. Love her or hate her, she can't be ignored.
She also talked about her mother passing away when she was a child and about the impact that has had on her life. But she pointed out that the new girlfriend had said, "You tell that story a lot," and it got her thinking. She didn't want that to be her big story of her life that she just kept telling and retelling and that it was sort of the answer for everything and for how the whole rest of her life has gone. It was a big event for sure, a sad and tragic event, but also an event that has led to some positive developments in her own life and personality and one that has brought about growth that can only come from great pain.

Interesting, huh? I wonder if I tell the Seth story too much. I don't mean to random passers-by, but just to myself. I'm this way or that way because Seth died, I internally rationalize. Yeah, I don't know. Maybe I do that.

To end, I'll share a picture I took of myself recently, trying to look distraught and forlorn. How'd I do?

A Tiny Complaint

2010-01-26T07:10:00.000-08:00

One drawback of our new preschool schedule is that Jude goes in the mornings, M-Th from 8:30-11:30. Simon goes in the afternoons, M-W-F from 12:30-3:00.

This means I
never.
get.
a.
break.

Love 'em! But the break was nice. I miss it.
This too shall pass.

How things almost went horribly wrong at Jude's completely routine procedure.

2010-01-21T13:47:00.000-08:00

So Jude had his ear tubes yesterday afterall. We called the doctor the night before and said he was snotty and running about 100.1 temp and he said that wasn't enough to call things off, so in we went yesterday at zero dark thirty in the morning and all went as planned...tubes were in, hearing test was normal, good news all around. So they sent us out to surgery waiting until we could come back and be with him in recovery. Then I felt it was starting to take way too long. As in, a procedure which should have taken an hour to 90 minutes tops was now taking over 2 hours.

Suddenly a different anesthesiologist than the one who had been with Jude during surgery came practically running out to the waiting area shouting for Jude's family. When we motioned her over, she crouched down and starting giving us this dire report about how Jude's temp had spiked to 105 right after he was extubated and that they were worried about Malignant Hyperthermia, which I found out later is pretty much a downward death spiral. She was clearly rattled, almost tearful, and was talking about getting Jude stable and admitting him to the pediatric ICU.
Holy. Shit.

They said to give them a little time for stat chest x-rays and blood tests and they'd come get us to be with him.

About AN HOUR later of waiting, they let us go back with him. He looked awful, puffy, red, still a little warm (down to 102) and eyes rolling back in head. Unresponsive. We noticed the pediatric crash cart positioned by his bed. At this point, the unflappable good doctor, a.k.a. Jude's daddy, looked, well, flappable.
Flapped, even.

After about another hour, all tests came back normal, temp was down to 98 and they decided to admit him to the peds floor (not ICU) to observe until the evening to see if he stayed stable. They had ruled out the hyperthermia thing at that point and thought maybe it was just viral since they already knew he had a little bug. By 5pm he had stayed fever free and perked up to his old self so they let us loose.

Whew.

That was scme scary shiz, my friends.

The Special Needs Ministry That Almost Was.

2010-01-18T12:46:00.001-08:00

I have mixed feelings about church and God and stuff. You may remember this about me.

Further, I have extra complicated mixed feelings about special needs ministry in church. Here's why: part of me feels that kids and adults with disabilities should have special services provided for them at church. I don't mean like ramps and accessible restrooms; that stuff is code per the American Disabilities Act and is just a given. I'm talking more about efforts made to provide 1:1 buddies for children in kids' service or efforts made by teachers to modify lessons for children with developmental disabilities or for separate classrooms to be staffed for kids who have sensory issues and can't tolerate the noise and chaos of kids' church. I'm talking about a whole ministry designed just for that purpose, maybe with its own name and logo and crew of trained volunteers and that maybe even offers respite care once a month or in-home services where needed or sibling support or who knows what. I mean a ministry that goes all out to meet the needs of special needs families.

The other part of me feels like I just want Jude and his people to feel as normal as possible and to blend seamlessly into classes without a big fuss and that the church will rise to the occasion to make accomodations as needed on a case-by-case basis but that a whole ministry doesn't have to exist to make people feel even more out of the mainstream than they already feel, singled out in yet one more branch of their lives, and that their nametags at church shouldn't be flagged with some bright orange marker or something that identifies them part of something like "God's Special Angels Ministries." Gag.

And so months ago when I opened up my big fat mouth and started bellyaching about how Jude needed a buddy at church, a teenage volunteer or two perhaps, to shadow him during service and just make sure he stays safe after numerous escapes from his preschool area, and went on to pester our pastor with emails detailing all the reasons why our church should provide such a thing complete with statistics about how special needs families tend to fall away from church over just these very types of issues, I was eventually given permission to start a special needs ministry at our church! At first I felt hopeful! Optimistic! Victorious! I had swayed them over to my side! Then I started reading up on the prospect of what is entailed with leading such an endeavor and I started, well, crapping in my britches just a little bit. I suddenly realized the magnitude of the undertaking. The legal issues. The phone calls I'd be sure to field from some disgruntled mom whose daughter's teacher may not have used "Person-First Language" and referred to the child as "autistic" rather than "child with autism" or some such. And I found out from running the nursery for about 18 months that heading up a volunteer operation is not for the faint of heart. Volunteers don't show up. People complain bitterly about free services. I can feel my blood pressure rising right now just thinking about it.

So guess what I did. I bailed. I sent my pastor a cowardly email in which I listed the three of four excellent reasons I would not be leading our church's special needs ministry afterall. I said I was sorry that I was one of those folks who points out a problem but isn't willing to BE the solution (I'm willing to be part of it all day long, but I don't want the buck to stop here) and I said I was sorry I enthusiastically indicated I would do it and then...changed my mind.

I feel bad. I keep turning the whole thing over in my mind. But I also feel good that I had the sense to realize my own limitations before I was in too deep.

Maybe someday.

Sunday Thoughts

2010-01-17T08:27:00.000-08:00

We both believe, and disbelieve a hundred times an Hour, which keeps Believing nimble.

-Emily Dickinson

Preschool Update

2010-01-16T10:26:00.000-08:00

Remember back in the summer and fall when I was agonizing over the decision to send Simon to Jude's developmental preschool as a "typical peer" and I was fretting and pacing and generally just acting like it was a freaking life or death decision? Well, we ended up sending them together. Didn't really work out. Simon's back at his old preschool beginning a coupla weeks ago and everyone is much better off for it.

This story proves at least two things:

1. Simon and Jude are two completely different little fellas with completely different needs. They can't be lumped together, as twins are sometimes lumped, and in this case they will need even less lumpage.

2. Seldom is a decision made that isn't reversible to some degree. When things aren't going well, we pay attention and have the ballz to change course if necessary.
It was a little awkward and took a few phone calls, but it wasn't the end of the world and both boys have come through it beautifully.

The reasons why it didn't work out aren't that interesting or dramatic. It just turns out that some kids aren't cut out for typical peerdom. Simon needs a little more structure and routine and um, sitting on, than the developmental class could really offer him. He's better off in a more predicatble environment. Nothing against him or Jude's preschool. Just not a good fit.

Stunning Realizations

2010-01-09T20:43:00.000-08:00

1. Facebook has a language called English (pirate) that is hi-freakin-larious. Go to settings and languages. Scroll down. Read facebook in "pirate" and laugh yer ass off, me hearties! Arrr!

2. Recently my Steve revealed that he has opinions about things sometimes that he doesn't speak up about because he doesn't want to "rock the boat". Am I that hard to live with? I had no idea. 18 years we've been married.

3. Jake accuses me of negativity sometimes. I bristle. I defend myself. I deny the accusation. Truth is, he's probably right. Jake is often negative, too and I don't like it in him any more than he does in me. Are we genetically predisposed to this? I've been watching that PBS series "This Emotional Life" which points to the idea that people are wired up that way from the womb, some bent more toward happiness than others and that it's just literally how our brains work.
This may be true. Doesn't mean we can't work toward overcoming that particular inclination so that people don't want to beat us about the head and neck, run the other way when they see us coming, etc.

4. Chloe only says she likes scary movies. When she watches them, she's miserable and can't sleep that night. I don't believe her anymore about that.

5. It must be depression, not thyroid disorder again. Because the antidepressants are really helping with my mood, my "excessive rumination" and compulsive thougts/behaviors. Good thing. I really wasn't looking forward to the electro convulsive therapy.

6. Kidding.

7. I love winter and snow sports. I live in the frozen tundra; might as well embrace it.

8. Jude's constant finger chewing and near-constant noise-making is probably a "stimming" behavior. oh, well.

9. I used to love going out to eat. Now I really, really prefer staying in. I am turning into quite the hermit.

10. That is all.