Friday, November 07, 2014

Hodgepodge

I have so much stuff banging around in my noggin. I went to yoga class at the Y this morning to try and get recentered and focused, not to mention burn a few calories. It didn't really work. I would have been better off going to spin class with loud music and more to help me get out of my own head. In yoga, you are supposed to try and free your mind, Neo, and empty your head of thoughts of stress or worry or judgment, but I am not good at doing that. In fact, that is one of the reasons my job was so good for me. I was too busy all day and all the time, in general, to get too stuck in my own head. It's a dangerous place to be.

So I thought of coming home and vomiting it all out on this blog, but since it's November and I'm thankful for so many things, I will attempt to put a positive spin on each item on my checklist of stuff that's keeping me in a twist currently.  Sound fun? I thought so, too. Here we go.

1.  My daughter is dating a boy for a couple of years now who has a very rough home life. I will not elaborate too much, but currently his family is going through one of the roughest patches a family could possibly go through. His only sibling, a teenage brother, is facing two counts of of vehicular homicide, felony charges that will almost certainly land him in prison for up to 18 years. Lives were lost, lives are changed forever. My heart aches for every one of them. What can I say that is positive? There is tremendous support from the community. There is the possibility of redemption. There are opportunities to reach out and show love, grace, and courage in the face of tragedy. We always have the choice not to sink into despair.

2.  This is a long one with a lot of back story, so you might want to settle in.
I have long resented the fact that too many people want to become involved in the lives of a family who has a child with a disability. Kathy Snow goes into great detail about this phenomenon in her book, Disability is Natural. When Jude was born, we immediately were visited by a social worker and soon thereafter by our first round of therapists at our home. We used to joke that we should probably install a revolving door because it felt for the first three years that someone was always here. It felt that someone was always in our personal family business.  It isn't meant to feel that way, I know. It's meant to be supportive and helpful and offer the best possible outcomes for our children. There is much to be grateful for when it comes to early intervention. Some families probably really couldn't do without it.  When we had Jude, though, we were already seasoned parents.  It was odd and intrusive to suddenly be getting the message that we couldn't do this parenting thing on our own. We would need lots and lots of help to pull this one off, we felt was the implication. But when we looked at Jude, we didn't see that. We just saw our baby, our son, who surely would learn things at a slower pace than his twin brother, but who did learn all those early things. I was never convinced that all the therapy made any of it happen any quicker. We'll never know. I will say our therapists were all wonderful, kind individuals and sometimes in those lonely times when a mom feels stuck at home taking care of little ones, the therapist's arrival down the driveway was a welcome sight.

Now we're in a different phase, the phase of the Medicaid Waiver. I can't even claim to fully understand what it is. All I know is that initial social worker at the hospital told me that in our state, we had about a 7-10 year waiting list for the waiver and that I needed to get Jude's name on the list as soon as possible. I think I did so when he was no more than six or eight weeks old.  His number came up about a year ago and here's what it involves. We have a case manager ( a lovely person who also has a son with a disability), a behavioral management guy who checks in as often as we want him to, attends IEP meetings with us, and helps us brainstorm new ideas when the old ones aren't working. We also have another service called Personal Assistance and Care, which a person can use for just about anything but we are using it for tutoring purposes now since Jude is a student. We went with a provider who allows the family to have control over who we hire to work with Jude. Basically we recruit our own staff, then they go to a training provided by the company and are an employee of the company and receive paychecks from them, but we make the schedule and run the show more or less, which I like. The Medicaid Waiver pays for all these services. We have a very small budget per year to use or lose for Jude, and our case manager oversees the budget. We have quarterly meetings with all the key players and Jude as he gets older, to make sure all is going well. That's about it.

Yesterday was our quarterly meeting, and it kind of made me a little mad. Here's why: the guy from the company who trains our staff showed up first. He's a former CPS investigator and just has this cop vibe.  He right away let me know that he completely understood why I didn't report Jude's ATV accident to their company within 24 hours of the accident because he knew I had other things on my mind (Uh, yeah. We weren't even released from the hospital within 24 hours)... but that in the future, I would need to report any trips to the ER within 24 hours so that a incident report can be made. What?
Well, apparently because we are in cahoots with the government by taking their money through this waiver, there are strings attached. They are in our business. And big brother is watching. And if Jude has to go to the ER for any reason be it illness or accident, they must be informed in a timely manner.
Man, I just didn't like it at all. I felt rebuked when he said, " I think it was weeks rather than days before we were informed." Yes, it was. I didn't even remember that I was supposed to inform them  until our behavior guy and I were talking about it and he mentioned that ER visits are supposed to be reported.  It's a safeguard in place to protect the helpless and make sure that children and adults with disabilities are not being neglected or abused. I get it. But ugh. It's enough to make me want to scrap the whole thing, which I pretty much told the case manager yesterday after everyone else left, but she reminded me that when Jude graduates from high school, we really are going to want and need assistance in keeping him engaged and active.  Steve and I simply won't be able to provide him with the employment or social network that he may need and that is where the waiver really comes in. So we have to play nice and limp along with it because of the benefits it will offer in about 10 years.  I really struggle with it, but when you have a child or adult child with a disability, the phrase "It takes a village" really does come into play so much moreso than with our typical kids.

3.  Here's a quick little one that is eating at me. I have two seniors this year! Two! Chloe will graduate from high school and Jake from college! So we're having a lot of last thises and thats this year and I am horrible and don't remember to document all of it.  For example, Chloe participated in NATS last weekend, which is a vocal competition, and did I record her singing? No I did not. Why? All the other moms seemed clued in.  And Jake.  It's his last year as an undergraduate college student and we've struggled to get to a couple of home football games with him this fall even though he's only about an hour away.  It's so hard to carve out a whole saturday when you have a bunch of kids. I sometimes think people who have one or two kids are really onto something.  I feel a tremendous amount of guilt for never being enough for all of them though I cannot imagine our lives without each and every one of them.

4. Along those lines, with the two olders leaving us, it will soon be Steve and I and the littles full time. Steve is 53, I am 45 and Simon and Jude are not yet 10. We have a ton of parenting yet to do. We feel tired sometimes.  Some of our friends are completing their childrearin', and we are still in the thick of it. We need to breathe deep and get a second wind. There is much to do!
 I realize that in the deepest darkest part of my grief over losing Seth, I was desperate to have another baby because though I didn't realize it at the time, I believe that I thought it would help ease my pain. Nothing ever could have. Like so many things in life, it was a distraction from my pain. Looking back at it now, having Simon and Jude was a very selfish desperate act of trying to soothe myself.  Having more children has added so much to this family and I am so grateful for each of them. Two whole amazing people walk this planet born from the ashes of our personal family tragedy. I also realize that I owe them a lot. I owe them my best as a parent from here on out. Their purpose is not to fulfill anything in me. No child's purpose is to do that. I marvel at how very individual each of our kids are and how differently they think and react to things and are drawn to different things and people. It's amazing they all came from the same gene pool and were raised in the same home. Vive la differénce!

5. Had a brief chat on the phone with my very own mom this morning and got a hint of that old familiar disapproval I used to feel as a kid when i wasn't doing something just right to please her. C'mon, you know exactly what I'm talking about. We've all felt it from our parents. It's weird to be pushing 50 and still feel it sometimes.  The desire for my parents' approval has never left me.
This morning it had to do with our current church. It's not my parents' church, not by a long shot. Their church is about as far right conservative as a Christian church could be and ours is about as far left. If it were any more left, it would fall off the scale. They don't approve, I can feel it. Thank goodness they have chosen not to confront us about it because that would be a mighty uncomfortable conversation about how the faith and tradition that Steve and I have chosen as adults is very different from the one we were raised within. They would likely take is as a slap in the face. That might even fear we had lost our salvation. They would fear for their grandchildren. It would not be a pleasant talk. So we all dance around it uncomfortably. This morning was one such time. They're coming this weekend and she wanted to know if we are attending church on Sunday. It's so much easier to skip to avoid questions, but I can feel the judgment for that, too.  Sigh.
Oh yeah, I was going to try and put a positive and thankful spin on everything. Well,  I'm really thankful that we have family who loves us and wants to spend time with us and who are concerned for us. I know it's because they love us.  I know not everyone has family who are involved or even still alive in some cases.  We nearly lost my mom a few years ago to a pulmonary embolism and I'm just so thankful that she's still here.

Whew. Well, I feel better now.  Thanks blog. I can always count on you.

Wednesday, November 05, 2014

In Which I Write about Jude's Little Stunt in the Yard

So I haven't yet written in detail here about Jude's accident on Labor Day. Today's the day. I still can't believe it happened or how lucky we were that things didn't turn out much worse.
I don't have to write the short version because this is my blog and you and I are both here by choice and I could go on and on about it if I wanted. I don't. Living it was bad enough. For weeks afterward I kept replaying a video loop of the accident and seeing Jude crash over and over and over and kept hearing the screaming and seeing the blood. I'm past that now and have been able to settle into the fact that he is fine and that all things considered, we had a very happy ending to this particular story.

So it's the short version for us today, and the short version is this: we had some friends over that Monday and Simon and two other boys were taking turns on his little 90cc ATV.  By little I mean it's still a frigging ATV. Simon had climbed off and was in the process of handing the helmet to the next rider in line, Steve had turned around to find the jumper cables for the big ATV (so he could give Jude a ride so he wouldn't feel left out), and the other parents and I were standing just a few feet away. In that teeny tiny little moment of opportunity, Jude ran in, jumped on, and took off. It was just that fast. Boy, did he ever know how to make that thing go!  It's just that stopping was trickier. He was accelerating wildly and losing control. All of us were screaming and chasing after him. My friend told me later that as she was running, she planned to throw herself in front of the ATV before he headed down the path into the woods. Thank goodness, he flipped right away. It certainly hurt him, but it stopped him. Had he kept going, he would likely have hit a tree and with no helmet I think it would have been a disaster. I've done disaster before and I can't begin to describe my gratitude for being spared it this time.
 
What we had instead was a few non life-threatening injuries, surgery, and an overnight stay in the hospital. He's got some scars to show for it, but life and limbs and everything else are all in working order.  What most remains is the badass V for Victory tattoo emblazoned on his cheek. Mederma is doing little to fade it for now, but it's only been a couple of months. Whew. It really scared the hell out of us. And just when we were starting to back off a little and were starting to believe that Jude didn't need to be hovered over quite so constantly. Guess what we're doing again now.
Hovering.
Constantly.



Thursday, October 30, 2014

Pensive Fall

A lot has happened since we last spoke, blog.  I used to say that fall makes me feel pensive. This fall has been no different, except I've thrown in a good dose of PTSD along with my melancholy. I was working full time as a teacher assistant at the middle school, mostly in my beloved language arts classes. I started last April. I was the 4th person in the position that school year so the kids were understandably suspicious of me. A big part of the job was working with students with emotional disabilities, a tricky group as successful working relationships depend on a balance of consistency, calmness in the face of chaos and/or outright fury at times, and sincere love. The kids can smell fakery from a mile away. It was late in the year, we were on an extended day schedule to make up for all the lost days during our particularly brutal Indiana winter, and everyone was just in a wicked bad mood.  I managed to earn their trust somehow and endear myself to the teachers as well. I loved being part of the staff and having something meaningful to do that was other than being someone's wife and someone's mom, as much as I do love those roles as well.
In August when school started up again, we were off and running, but began noticing more behavior problems during the school day with Jude. Middle school starts 90 minutes before elementary, so I
was having to drop off the boys as much as two hours before their school started in the child watch program at their school. Here, they would frolic wildly with 40-50 other kids with no structure or routines and then at 9:00 be expected to flip a switch and be all business for school. This proved to be nearly impossible for Jude and pretty darn tough for Simon, too. Because Jude's behaviors are tracked so carefully because the elimination of the really nasty ones like hitting and kicking is part of his IEP goal, we happen to know that there was over a 20% increase in them after my beginning work. Hard to think there wasn't a connection. This was all concerning enough, but then one day at work I received a phone call from the elementary principal informing me that Jude had gone missing during his time in their care that morning before school. They didn't know for sure how long he was gone, only that he was found wandering on the other end of the building by a teacher. Thank goodness he didn't just leave the building because he's been known to do just that.



So that was that.  I turned in my resignation and I'm back to subbing and hanging out at the Y and, well, apparently blogging. Some of the students were very upset about my leaving. I figure if you can win over that crowd, you must not be all bad. I will miss them, too.

It's been a rough fall in other ways, too. Jude had his ATV accident (also known as HOLY SHIT! JUDE JUST TOOK OFF ON SIMON'S ATV!) which deserves its own post. He is still healing and  so am I. Steve's mom has been struggling with dementia for a couple of years, but the downward spiral over the summer was such that she could not live alone any longer. Because none of her children or their spouses were able to be available to her around the clock, she is now living in a nursing home.  We visit as often as we can, a couple of times a week or more, but it never seems to be enough. Some days she's lucid and pleasant, others she has a glazed over expression and can't quite remember our names or words. On those days, conversing with her becomes a game of twenty questions.
Grammy: I need you to help me with that thingy.
Me: Ok. Thingy?
Grammy: Yeah.
Me: What is the thingy?
Grammy: Oh, you know.
Me: I really don't.
Grammy: The guy! And the thingy!
Me: Maybe you can meet me halfway. Who is the guy?
Grammy: Oh, what's his name?
Me: I was hoping you would know.
Grammy: That guy and the thingy!
Me: What does he look like?
Grammy: Who?
Me: The guy.
Grammy: What guy?
Me: (begins gently sobbing)

Many of my friends are quickly approaching or already are empty nesters. Because Steve is older than I am and the baby of his family, we are some of the few we know already dealing with failing health of parents. We are in a weird middle ground of still raising small children and also caring for an aging parent. As much as I was enjoying my job, I know I am very fortunate to have the option to let it go so I can focus on family needs right now. We're in it neck deep.

Friday, June 20, 2014

Hello, Stranger.

Logging in at Blogger now gives me a nostalgic feeling, like the one I have when I smell cut freshly cut grass or when I walk into a theme park.  I think back to the day I created this blog when our twins were only toddlers and my oldest son, now 21, was just entering his teen years.  In some ways it seems like just yesterday and in others it feels like lifetimes ago.

I'm not sure I like the evolution blogs have taken over the past decade, or maybe I mean the perception I and many others seem to have about blogs.  Terms like "Mommy Blogs" make me think that people assume many mothers have nothing better to do than sit at home ignoring their children while posting beautiful pictures of them and the gorgeous gourmet dinner they were fed just the night before.  I've had a love/hate relationship with this very blog for almost as long as I've had it, but I can't imagine ever deleting it. In my own amateur way, I have chronicled our lives here and recorded details that I'd never remember without the help of this blog.  Last spring, I went back to work full time for the first time since 1997 to a job that I have mixed emotions about (story for another day) and have not have time to check in much since.  The only reason we have some down time today is because Simon, 9, is asleep on the couch with a mysterious fever.  As Jude plays Wii 9 (he's gotten to be an expert on Wii Sports, his favorite), and Chloe packs for camp, I thought I'd take a moment or two to say hello to the ol' blog.

Not a whole lot has changed; Steve is still doctoring. Location changes every few years, but still taking care of sick people.   This time next year our two oldest will have both graduated; Jacob from college with a BS in Biology and Chloe from high school.  Two bonafide adults. How did that happen so fast?  Simon and Jude, our babies, will be 10 and we'll be down to just the four of us for most of the time around here. If Seth had lived, he'd be entering his junior year of high school in the fall and Steve and I would staring down the barrel of empty-nesting.  I sometimes think about that and wonder what life would be like and how different he and I would be if we had not had had Family Version 2.0.  We often say their presence  is either keeping us young or driving us to an early grave. The first, I think!  We keep doing crazy, mindless and alltogether ill-advised things like getting new pets, too.  The latest is a puppy we rescued from a shelter a few hours from here. We saw his picture online and decided he looked like he needed to come live with us. He's a full-blooded mutt.  We actually haven't the first idea what he is. We assume he is a dog, but like Lilo and Stitch, we can't really be sure.  We named him Rudy and each day we clean his accidents off the floor because we get preoccupied and forget to watch him every second to prevent such occurrences.

I'm trying to get caught up with my reading this summer and I've already read a few books I've liked, but my current book is a new favorite. It's called Why I am an Atheist Who Believes in God by Frank Shaeffer.  I relate to it to the point that I feel like he crawled inside my head.  I find myself reading and re-reading passages and highlighting and wishing I could have a conversation with him about it.  Frank Shaeffer is the son of missionary parents. He grew up deeply entrenched in the fundamentalist evangelical church and has now abandoned almost all of it except he still loves church...and prayer. It's so much a part of who he is that he can't abandon it. When people say, "Frank, God's only in your head!" he says, "Yeah, what isn't?" It brings him comfort. It connects him to his dead parents. It reminds him of his past and his childhood. He writes, "If we wait for correct ideas to save us--theological or otherwise--we'll never be saved, even from ourselves. Why? Because we can never have a fully correct idea. Why? Because however we label ourselves, we are still only half-evolved primates in two or more minds and multiple moods."
He also writes a lot about passing down our stories and about enjoying each moment, which is something I've been working on trying to do for years. I realize how quickly it's all passing me by and that all I have for sure is this moment, right now.  I let a lot of them slip by because I'm distracted or miss the significance until I'm reflecting on it later.  I am a flawed individual, let me just tell ya.  I think I'm lazy and short sighted and possibly very underachieving.  I want to be better. Does that count?




Sunday, April 27, 2014

Spring is Here

Spring is here, the grass is growing, and it's just in time.  I desperately needed a couple of hours on the mower today to sort out my thoughts and it's almost the only time I have to myself anymore to do it.

The new job is great. I really love being back in the middle school with those kids. Call me crazy (foregone conclusion at this point), but I think that age group is the best to work with.  They're nuts too, so I fit right in.  I feel I have quickly established rapport with the kids and the teachers and am off and running. Man, has teaching changed though since I left off in 1997, though.  TECHNOLOGY! All the classes have smartboards and all the kids have smartphones and iPads and it's just everywhere. It's not nearly enough to know your content area these days or methods of imparting that to the kids; you have to be an IT expert, too. 

I am adjusting slowly to my new schedule, but 5:15AM is very early in the morning, my friends.  I miss my gym rat mom friends and I'm having a hard time finding time to do stuff like laundry and go the grocery store...just like every other working parent out there. 

Since it's spring, many things are winding down at school and end of year banquets and programs are happening. I am starting to think I get my feelings hurt easily because I come away from a lot of those things feeling bad. Facebook is also making me feel very bad lately for a variety of reasons.  I'd probably be far better off to delete my account. The only reason I don't is because of the groups I belong to and all the good info. I'd miss out on. Who has time for information these days though? Maybe I'll try a trial without it. My daughter was getting her feelings hurt a lot and decided to take a break from Twitter, Instagram and Facebook and she says it's the best thing she's done for herself in a while.  Sometimes she is so much smarter than me. Also my husband is smarter than me because he doesn't let his feelings get hurt by being snubbed by people. He doesn't even notice it. 

Speaking of having no time, what am I doing blogging?

Wednesday, April 16, 2014

On Making Assumptions

I rarely have conflict or drama in my life, but when I do it seems to stem from poor communication. I fancy myself a good communicator, but I am realizing that I may have a tiny tendency to make negative assumptions about others.  I am figuring this out late in life, but even at 45 today on my birthday, I am still learning so many things that will make the second half of my life more enjoyable for me and those who deal with me.

We judge ourselves by our intentions, but we judge others by their actions since we can't possibly know their intentions.  We give ourselves the benefit of the doubt because we know our intentions are good, but why do we not extend that same benefit to everyone else? Whatever the reason, we end up getting our feelings hurt or hurting others because we knee-jerk react to something we may have cooked up in our own imaginations based on negative assumptions that have no basis in reality.  One solution may be to ask more questions rather than jumping to our own conclusions, but that only works if the other party is willing to talk. That's the most difficult time not to make negative assumptions, but it's important to try and not take it personally and move forward positively.

Anyway, you know what they say about assuming.  They say it makes an ass out of "u" and "mi"...that old chestnut.  So true.  I've got to go now as I just got a genius idea for a cross stitching project.

Back to Work

I start a new full-time job as a teacher assistant at our middle school bright and early tomorrow morning. I have been wanting to get back to work for a while now, and when I saw this job come up on the corporation website which I had been checking regularly, I applied immediately.

I am really looking forward to it. I'll be working primarily with students with emotional disabilities, but also doing some individual work with students with IEPs who need help with their language, science, or social studies.  Some other poor schmuck handles the math, thank the Lordt.
I let my teaching license expire years ago, but during the interview I was asked if I would be willing to renew it to be poised and ready if an English job becomes available.  I guess we'll jump off that bridge if/when we come to it. I know that my being back at work will be an adjustment for the whole family who have come to depend on me having my days more or less free to handle all the details of all of our lives, so I think we should take baby steps in getting used to having me less available.  My responsibilities and stress should be minimal with this job, which I think will be good to start out.

The hardest part will be the hour of our rising.  The boys and I will have to leave the house at 6:45 each morning. They are not used to being up before 7:30. We'll adjust, but might be a little tired for a while.  My plan is to have them shower at night and pick out clothes they can jump into in the morning. Also we'll make all the lunches tonight. It'll be fine. Right? Anyway, I am excited and figure it'll be good for me. You know, keep me off the streets.

Tuesday, March 25, 2014

#SoBlessed

It's my new pet peeve. Every once in a while I am struck with a new church jargon-y saying that will catch on and suddenly everyone is saying or writing it smacks of an insider's club where we say certain sayings that the outsiders don't say.  A couple of examples of this are when we talk about unpacking scripture or loving on our neighbors. Gross. Why are we loving on them? Why are we not just loving them? I for one do not wish to be loved on.

This new habit many of the faithful have of saying they are so blessed all the time about things like getting a promotion or having successful children or finding the great deal on the used car...Suddenly this one is everywhere. I bristle for one thing because I think it implies a terrible theology. It is contrary to my understanding, at least, of what being blessed means. Our very own Lord and Savior said that blessed are the poor in spirit and the meek and those who mourn, not those who live comfortable lives in the 'burbs.
Here's another one that causes me literal physical pain: praying for a hedge of protection. The bible uses this hedge vernacular several times to imply protection from harm so many Christians enjoy saying how they're praying for a hedge of protection for their loved ones because it's neat to incorporate scripture into your prayers. Makes it more powerful. It's funny to me. If I want protected from something, I think I'll try to hide behind something more substantial than a hedge. Why not pray for a 40 foot steel wall of protection? How about a impermeable force field of protection? Anyway, go ahead and pray your heart out for protection or for healing or for promotions but my observation has been that results will vary.

Want to know more about meaningless church jargon? Here's a more thorough list of the latest along with compelling reasons to stop saying this nonsense.
http://www.patheos.com/blogs/nadiabolzweber/2014/02/828/