Merry Christmas to all!

I'm happy to say that the reason I haven't posted lately is because things have been going so well. Sam is having a good year at school, thanks to some new-found diligence on our part (it's too easy to become complacent when things are going fairly smoothly. You tend to let some things slide that maybe should be paid more close attention to) Anyway, I'm thankful not to have to be reliving the stress of last year at this time. Sam's anxiety level is pretty low at the moment- he's handling stresses better, coping with disappointments well, and is doing better in social situations.

My stress level, however, is about to go up. The BIG decision about middle school placement is just over the horizon in January and February. A lot riding on this one. Keep him in a program where he gets lots of support, behavior management, and sensory integration, BUT may not teach him up to grade level, ruining his chances at a regent diploma and college? Put him in a new program that may get him up to grade level, increase the expectations for academics, and integrate him more fully with "typical" peers, BUT probably offer minimal support from untrained aides who don't get it or him? Give him drugs that MAY allow him to focus better, but first mess around with dosages so he feels like shit, sleeps badly, and produces god only knows what other side effects?

If there's one thing I hate about the autism diagnosis, it's that "trial and error" kind of mentality about interventions. I know all kids are different and what works for one may not work for others, but I can't stand the whole "Let's-try-this-and-see-if-it-works-and-then-if-it-doesn't-we'll-try-something-else" Makes me feel as if my kid is being used as test case for someone's research project. Once the project is done, the report is submitted, and the person who did it gets their grade, but I'm still stuck with figuring out my kid's future. I bet parents of NT kids don't go through this with the transition to middle school. I bet they just go from one school building to the next one, in the same town, with many of the same students. What a concept!! I bet they don't have to traipse from one classroom to the next, from one town to the next, comparing programs, facilities, teachers and therapists who may or may not be there next year, consider how long the bus ride will be, or whether their child will have support to help them be organized, make friends, handle assignments, etc. No, the neuro-typical school experience is one this family will never have.

I had one of those really pleasant conversations today (in the midst of a school xmas party, no less) with a social worker who, for the umpteenth time, had to tell me that Sam would really benefit from ADHD drugs- and that I should just ask so-and-so's parents who were also against drugging their child, but who is doing miraculously well now that he's on them. No one ever wants to tell you there is a down side, or what happens when meds DON'T work. I'd be curious to hear from people who tried but saw no improvement, but no one talks about that.

Sam learns differently and at a different pace than other kids. Isn't there anyone out there who can just teach him in an effective way, and leave all the baggage at the door? He can't help the way he is, but somehow I can't help but feel that we are constantly being blamed for how he functions. In schools, everyone has to learn the same way, and those that don't, get "special ed". Unfortunately, all those in special ed have to learn the same way, too. It sucks. If you are in special ed, you must not be smart enough to want a college education- those things should not matter. If you can't hack a classroom with 25+ kids in it, you must be a freak. Unfortunately, the things we want for Sam don't fit into either near little public school package. What's wrong with public schools that they can't get the job done for us? We pay enough taxes in this legendary fiscally wasteful state!

What was that I just wrote about my stress level "about" to go up? I think it already has, thanks to all the "educators" out there. Merry Christmas to you, too!

Trying not to let stress get to me.....

Here we are again, my most favorite time of the year- annual review time! I know I've written about the joys of this yearly ritual before, but it's a topic that never seems to get any LESS stressful, at least for me. Even in years when things have seemed like they were going to be a cakewalk, I manage to squeeze some worry time in, and this year is no exception. There's something particularly galling about having to annually review a process that most parents of kids in school take for granted. It's almost like a punishment you have to go through for having a child with a disability. The chance to sit around a table with people just itching to prove you wrong, to make you feel like you know nothing or that your child is costing the taxpayers money is just priceless. For those of you who have never had the "wonderful" experience of an annual review, let me enlighten you. It's the time of year when you have to face the school district administration (you know, the ones who sit behind desks and maybe have seen your child once or twice, but who really only know him as a name on paper. Geez, I know some of the ancestors I research for people's genealogy better, and they are dead!!) and justify just why your child needs to be in a special program, needs to continue speech therapy, needs sensory integration therapy, needs a one on one aide, needs any extra help at all, just because he has a (insert GASP here) diagnosis!! So in other words you sit at a meeting and spell out just how horrible your child is doing so any services he receives can be justified. The first couple of times I was subjected to this abuse, I found it pretty tough to take. School is supposed to be about success, right? No child left behind, right? WRONG!! Luckily over the years I've developed a pretty thick skin and have learned that to play the game and win (well, winning is a relative term here), you have to make your child look as bad as possible. I never thought I would be able to point out my son's difficulties and not burst into tears over it, but practice does make perfect. If you don't make your child's "issues" seem bad enough, they are in danger of having their services taken away, or, worse, being "declassified". I'll never forget when this was suggested in the case of the son of a friend of mine, also an Aspie. His father wanted to ask the powers that be within the school, "Does that mean he's cured?" As if the schools could ever take credit for something like that! Our rendezvous with the school, teachers and therapists is scheduled for next week. We have been luckier than most, the staff who works with Sam usually runs the meeting and holds our hand through it. However, we have questions for them as well. Why are his state test scores so low? Why is he not performing at grade level? WHY DID WE HAVE TO WAIT ALMOST A WHOLE YEAR TO FIND THIS OUT? Clearly, the system is breaking down somewhere! A valuable lesson that I've learned through all this that keeps appearing over and over and also keeps proving its validity is that there is no one who truly cares for your child as much as a parent does. A mom or a dad is without a doubt the best advocate for their child. Teachers, therapists and administrators may talk a good game, but in the end they are doing a job, and it's not the important job that you have as a parent.

Cabin Fever- can it be a good thing?

This is the time of year that's usually marked by the planning of vacations, gazing longingly at seed catalogs, counting off the days until spring. This year's cabin fever has been especially intense due to the unending snow storms we've been getting and nearly weekly snow days. I'm here to say that although I'm experiencing the usual cabin fever that takes over my life this time of year, I'm also kind of enjoying it.
That's mostly because Sam's in a really good place right now, and I can't help but think a lot of it has to do with our slower (sometimes even non-existent) pace. Since returning to school after the holidays, Sam's anxiety level seems to have diminished significantly. Reports from school are good, he's been mainstreamed into a 4th grade reading class which he is enthusiastic about and enjoying, for the most part he's cooperative and enjoyable to be around at home.
Since before Christmas I've been in a kind of anti-social funk. I haven't wanted to make the effort to get people together mainly because I sometimes feel like I'm ALWAYS the organizer. Of course if I sit around and wait for others to contact me and make a plan, I may as well resign myself to the fact that I'll probably be sitting for awhile. Honestly, these days that's ok with me. I'm seeing the positive results that not always being on the run is having on my family, and that makes me happy.
I've been following Sam's lead too. At this point he doesn't seem desperate for friends or social interactions. I wait for him to bring it up. We still do game club, just not as often. He's cultivating friendships with Jory from swimming and Kailin, the daughter of a guy Tom works with. Any encounters he's had lately have been quite positive and successful. We're not pushing them- maybe that's why.
I can imagine it must be exhausting to exist in a world where you don't get the rules and don't understand why people act as they do. Probably a lot like living amongst people who don't speak the same language you do. To put yourself out there in that uncomfortable situation must take a lot of effort, and would certainly not be something you'd want to do every day. Maybe cabin fever is providing us with an excuse for keeping close to home, being where we are comfortable and can just "be". Maybe it's like a recharging time, when we can save our energy up to go out and face the world- me to once again organize my social calendar, and Sam to be able to interact socially and have it be a positive experience. I've always known that being overscheduled made me miserable, so maybe now I've taken it one step further, or lower, however you want to picture it.
I am looking forward to spring, but I hope we can experience it and the rest of the year at our snail's pace.

The Post-Holiday Blues

I've never been one to experience a let down after the holidays are over. This goes back to my days of working in the photo industry, when the weeks before Christmas were consumed with hours of toiling over a hot photo processor. The one thing January always meant to me was a break!! Nowadays, the holidays can be somewhat difficult for our family due to the drastic changes in routine, the inevitable fatigue, high expectations, and unfamiliar circumstances we sometimes find ourselves in. January, once again, seems a month of refuge and return to "normalcy". Today as I'm taking the decorations off my Christmas tree, I'm reflecting a little bit on holidays past, and the things that have changed over the years.

For Christmas this year, I surprised Tom with getting our old 8mm tapes transferred to DVDs. Most of them were taken during Sam's early years- everything from his birth to preschool graduation. I wondered how I would react emotionally to viewing those moments before we knew anything was "wrong". Back when I felt like any other new parent- I thought my son was the most brilliant creature who ever lived. There was video of him counting before he was two and reciting ABC's at age 3. I know I used to think he was gifted when he sounded out his first word at age 3 and could read during his second year of preschool. Then came the diagnosticians, the therapists, the therapists and the administrators. Somewhere along the way I allowed them to collectively squash the hopes and dreams I had for my kid. Somewhere along the way I started to buy into the whole "disability" drama, and see him through the clouded haze that they saw him through. The problems became the focus. I no longer saw that beautiful, brilliant, curly haired boy who made this reluctant mother so glad she took the plunge and reproduced.

I'm completely ashamed to admit that. I guess maybe I didn't realize how far I had sunk until I saw those DVDs from so long ago. It makes me so sad to think about the years that have been lost to this fog of someone else's creation, but I have to accept part of the blame for allowing it to happen. Perhaps I didn't have the strength to fight it, maybe I just figured I had so little experience that I needed to be led by the hand to a place I didn't necessarily want to go. It makes me sadder than I've been in a while to reflect on all this.

But it also makes me feel something else. Pissed off! Maybe I allowed others to alter my vision for awhile, but I don't want that to be the case anymore. Sam is still Sam. He is still brilliant. I have yet to see any school work that he has struggled with. Sure, he has some things to overcome. All of us do. Sam's difficulties present problems for people because they are not the usual difficulties children have. He has often baffled even Tom and I, so I can understand the frustration people dealing with him have, and why they "check out" and hang their hat on the limitations his disability presents. It's easier to write a person off and define them by the diagnosis they have. I am feeling so sorry that I allowed myself to fall into that trap. Before October 2005, Sam was defined by his personality, his love of life, his intellect, his sense of humor, and yes, his quirkiness. My goal for 2011 is to get back that optimism, the belief that anything is possible, and to never give up trying to get the best for Sam.