Tuesday, March 31, 2009

My favorite day of the year

Tomorrow is the one day of the year that I dread above all others. It's the day when Tom and I have to beg and plead for our son to receive the education that is appropriate for him. Seems pretty simple, right? What most parents take for granted, the "free" public school education that children get every day with barely a thought from anyone, is not so free for us, in terms of time and energy spent. Each year I worry myself into a frenzy over something that by definition should be a pleasant, or at least, tolerable and business-like, experience. A committee is set up to determine how best to educate a special needs child. This committee should, theoretically, have the best interest of the child at its heart. (remember that "no child left behind" thing?) Due to my inherent distrust of people in general, I find it hard to believe at times that anyone on the committee save for Tom and I has much interest in what's best for Sam. Of course this varies from year to year, from school to school, and from team to team. This year I feel like we are in pretty good shape- there's Tom and I , and then the team currently working with Sam, whom we are in agreement with about next year's placement, the team that spends 6 hours a day, 5 days a week with him, and have for the past 2 years.

Then there are the ones holding the purse strings. The ones who have only seen Sam on fewer occasions than there are fingers on one hand. The ones who administer tests that will claim to tell someone anything they would ever want to know about a child. The ones who know what children with Asperger's and Autism are "supposed" to be like, and what is "supposed" to work for them. These are the people who have been instructed by the people whose job it is to spend taxpayer money to save as much as they can. So I don't believe that my son's success is their first priority.

I think back to my first CPSE meetings, realize how woefully ignorant I was, and thank God that someone up above was looking out for me. I feel like it's pretty miraculous that we've been as successful as we have given our lack of experience. One good aspect of all this is that with each year that goes by, and with each experience I have, I learn something new. I've always kind of gone with my gut feelings, but now I feel like I'm gaining knowledge to back up what I've always felt was right.

So while I still dread having to go through all this to get something that should just be a no-brainer, I realize that anything worth having is worth working hard for. I will walk into the meeting with my game face on, and with confidence that no matter what, I can let my gut and my true interest in Sam's well-being guide me. It hasn't steered me wrong in 4 years, so I'm gonna stick with it!

Monday, March 16, 2009

Toggling between two worlds

One thing I constantly struggle with in my quest to make a success of parenting a special-needs child is the challenge of indentifying where we fit into the world. Are we members of the special needs community? Are we functional enough to embrace the realm of the "normal" world? Does it even matter? Of course the simple answer to this dilemma is that we exist in both worlds to a degree.

I have to say I feel quite comfortable as a member of the special needs community. A lot of my associations have to do with people who are dealing with family members on the spectrum, as we are. These people have seen it all, and not much rattles them. Certainly nothing my child could do would make them bat an eyelash. There is bound to be a sympathetic ear, and someone will always have a story that can top your worst experience. You can't buy that kind of acceptance, and it's really worth a lot to me. Another thing I feel is an advantage about belonging to this community is that it gives Sam a safe environment in which to shine. People who are "like us" see Sam as a star- verbal, literate, upbeat personality. They are less apt to define him by his "issues".

There are, of course, negatives to it. The biggest one is that you usually have to go out of your physical community to make connections, so geographically you may not be able to be in the environment as much as you'd like. Also, there is a whole big world out there that is not included here, so at some point you have to come out of the protective umbrella and venture out into the world.

The normal world makes me uncomfortable on a lot of levels. Lately it seems to be getting harder, not easier. Back when Sam was 4 and did something like throw something, or run away, or lay on the floor in the post office, it was fairly easy to explain away to curious on-lookers. Now it's more of a challenge. My fear of not being able to handle the stares, rude comments, or rejection of "normal" people makes me gun-shy of trying new things. I often wonder (say, maybe 10 or so times a day) if I'm doing Sam a grave disservice by not exposing him to more "normal" world activities. Instead of signing him up for soccer on a town team, instead I choose to have him take swimming and golf lessons from STRIDE. Instead of putting him a cub scout troop, I choose to sign him up for a social skills group for special needs kids. Is this wrong? Should I be accompanying him to "normal" activites, knowing that I would have to be by his side 110% of the time to make sure it worked. Doesn't this defeat the purpose of the activity?

I know people with spectrum kids who spend very little time in the "special needs" world. Maybe their kids are just better equipped to deal with more "typical" activities than mine is. It makes me sad to think that Sam might be missing out, but then in nearly the same thought, I know I shouldn't wish for something that isn't possible.

Does all this matter? Most of the time I think I come to the conclusion that really it doesn't. What we need in this family is a healthy mix of the two worlds. I'm still struggling with getting out of my comfort zone and pursuing those kinds of "normal" activites that would be appropriate for Sam. If they are out there, I want to find them. In retrospect, maybe I've always kind of struggled with what was "normal" and what was "not". I used to feel not normal because I was so on-the-fence about wanting a family to begin with. Now I feel "not normal" because I'm not able to balance my life the way I want it. I think way back long ago, I tried to convince myself that there is not just one definition of normal. We as individuals can determine how we choose to live our lives, what paths we follow. If we choose to live an "a la carte" kind of life, picking from different communities, activities, friends, situations, that should be our choice. There are people who never choose to leave where they are most comfortable. I want to make the choice to keep pushing myself to walk out of my comfort zone and find the best opportunities, no matter which world they are in.