Saturday, February 5, 2011

Hills in the Marathon

A friend of mine is going through a serious health issue right now, and the other day on her blog she was writing about how what she's facing is not something that you just deal with and move on from. "This is something that's going to be with me for the rest of my life," she wrote.

While my life situation is obviously different, her words resonated with me. Yeah, I can get that. Kind of like this autism thing. That whole, it's-a-marathon-not-a-sprint deal. The other day I was reminded how early in the race we are, how many hills in the marathon there are to climb.

I kind of made some assumptions about Ethan and preschool. His birthday is November 28 and he started on November 29. He's doing well (despite numerous snow days and a Christmas vacation), and they want him spending more and more time outside of the autism classroom and with the other kids. Due to where Ethan's birthday falls in the year, I always assumed if we are going the route of having him the blended classroom (hooray!) that when the new year starts in August, he'd start with 3-year-olds, not 4-year-olds.

Not so fast.

He will be three, but turning four next year, and the birth date cut-off (currently being debated in CT) is December 31. A friend who used to teach pre-K was telling me the other day about how she was forced to send kids along to the next class who weren't ready, kids whose birthdays were even in December and were nearly a full year younger than some of the kids, and incredibly immature.

Maybe I am naive, but I was mortified. I'd always heard, especially when it came to kindergarten and boys, that it was no big deal if parents wanted to hold them back an extra year, especially if they'd be the youngest in the class. I started kindergarten when I was 4 and was almost held back due to my shyness. To be honest, I always felt a "kinship" with the class behind me rather than my own peers. My own parents regretted sending my brother to kindergarten too early. If Ethan hadn't been diagnosed with autism, we would have done what we needed to do to have him start kindergarten when he was 5 turning 6, not 4 turning 5.

But then I heard my friend talk, and I went online and did some digging, and found out she was indeed right. Not only that, but I came across other parents of kids with ASD who had been told their child HAD to start kindergarten in order to continue receiving services. Again, this started my blood boiling. How could this be? Was it really all a matter of money? How could the state go against a parents' wishes in this area? And of all kids, to make children who already have social issues attend with kids who are another step ahead socially just because of their AGE?

I called a Connecticut Parent Advocacy Group and haven't gotten a call back yet. Then I spoke with someone at the state's Board of Education. She confimed my suspicions...that when we talk about Ethan and next year, his teachers will most likely recommend he move on with the 4-year-olds.

There was an undercurrent that I picked up on while she was talking. There was a theme that troubled me in so many ways. Her point, which she said without saying, is that unless your child is borderline on the spectrum, these kids are going to continue to have issues. Basically -- it's not going to make much of a difference, anyway.

After I hung up the phone and mulled the whole thing over for the rest of Friday afternoon, I kept vacillating between anger ("How dare they?!") to resolve ("She DID tell me to raise the issue and voice my concerns, as if there is some room for leeway") to doubt ("But maybe I AM just in denial, and maybe all of this is coming out of a desire down somewhere that more time is just going to 'cure' him.").

I thought and I thought. And I knew I needed to hand everything back to God. So I did for the most part, but that doesn't mean I'm waving a white flag. There could be a fight ahead. And when I step back for a second and think about it, I see that this is just one swell in a winding path with many ruts and mountains, a path that I frustratingly cannot see the end of.

This makes me feel very, very tired.

But marathon runners (not that I have any sort of personal experience!) will get nowhere thinking of how far they have until the finish line. They just take it one hill, one step, sometimes one breath at a time.

So, what more can be said? Except here we go.


Anonymous said...

wow, i have never heard of this before! kids will not get services if parents choose to wait a year before kidnergarten. seriously?

i'm glad you are trying to give all your anger, doubts and concerns to God. in my own experience we have been prepared for big fights w/ the local school district. God has always gone before us, always given us favor, and given us wisdom in how to deal w/ people. i pray the same for you and your family.

i truly enjoy your blog.

Deb said...

Thanks :) You know, as an update, I did talk to someone in the advocacy center who said they cannot technically do that (and to clarify, Ethan's school didn't say this, but I've heard of it happening to other parents in different school systems). I may be getting ahead of myself because I don't know how his school treats the issue...but it was disconcerting to find out, nonetheless. I am praying we don't have to go the route of "fighting." But I know that's often a reality for parents of kids with ASD, particularly when it comes to the schools...