This is probably the hardest post I've ever had to write on here. I've been thinking about what to say for weeks, and I still don't have the right words. I've been putting off writing about this, as nothing is yet carved in stone. But I feel like I have to write, to share with those who have kept me going all these years.
In short, we are looking at Janey leaving the inclusion school she's been part of since she was three, and in fact really before that---as her brothers went there for years before she did. This is the 13th year I've had a child in her school, and it might be the last.
It took me a long time to accept what others were working on telling me gently---that Janey is not really any longer benefiting much from being in an inclusion classroom. There are many reasons for this, but the one that hit home, the other day, is that due to her behaviors, she really already isn't being included. It's not possible. Janey, more and more, spends the day at school screaming, biting herself, scratching herself, and, more recently----lashing out at others, pulling hair with no notice, even once in a while biting others. It's not safe for kids to sit next to her, to work with her, although to the eternal credit of the kids, they still want to. That is the beauty of inclusion---that the kids in her class accept her. That is what I love. But in the long run, what is important is what is best for Janey. Janey can't learn in her current state, not really. She can't make progress any more in a room that is not modeled for children like her, children with severe special needs.
The next step is to figure out where Janey should be. I wrote a few weeks ago about visiting an autism-only classroom, which is where Janey would probably be placed. There are several groups of these autism strands in the city. They would provide Janey with a classroom designed especially for children with autism, with schedules with a minimum of surprises, with many, many professionals around that are experts in dealing with autism. In many ways, it's possible Janey will be able to learn more under those conditions than she does now. If the autism-only classrooms don't work for Janey, then we will look at other placements.
There are no villains here, no bad guys. The staff at Janey's school, especially the special-ed classroom teacher this year, love Janey like their own. I am sure if she does move, I will be far from the only one crying. But we all have to live in reality.
So why do I feel so sad? Why have I cried myself to sleep for the last few nights? Well, because in many ways, this is making me admit something you would have thought I'd have admitted to myself a long time ago. Janey is more complicated, more involved, than even most kids with autism. There are many autistic kids at Janey's inclusion school, doing well there. But Janey's combination of low functioning autism, intellectual disability and behavioral challenges are very hard to find the right way to deal with. I've been trying, trying with all my heart and soul, for many years now, and there are days I feel I haven't made any progress at all. Her school has done the same. And still, Janey screams, she cries, she scratches, she bites, she learns very slowly. It is not easy to admit to myself that even in at a school where everyone loves and cares for and is trying their best for Janey, she is not able to progress.
But there's the great days. There's the days I watched Janey running outside with the other kids, keeping up with them, indistinguishable from them. There are the thousands of times I saw teachers, staff and other kids excited to see Janey, thrilled just to see her smile or laugh. There's the heartbreakingly beautiful moments she suddenly sings a song, in perfect tune, with all the lyrics, a gift from somewhere deep within her. There is the love I've felt and I know Janey has felt from a remarkable school community.
I still hold out hope for some kind of miracle, for some sudden, amazing improvement which will allow Janey to stay where she is. But that is looking less likely. Our IEP meeting is at the end of the month, and that is when we will have to make some decisions. I will do everything I can to make sure wherever Janey ends up, it's a place where she is cared for and cherished and able to grow. But I wish, I wish more than anything, that inclusion was working for her.
Rarer in Girls...Life with my daughter Janey, who is twenty and severely autistic
1 comment:
It's tough to change your position as you've been an advocate of inclusion and Henderson but it takes a bigger person to admit there may be a need to change the course of your kid's education. My daughter goes to a regular daycare but she doesn't participate in all the activities and seems to be ignored by the teachers a lot of the time. The place isn't set up for an autistic child. It probably doesn't matter as classes aren't that structured that age but I wonder if she will be able to just sit down in chair and not wander around the classroom in a year or two. She spends a couple of mornings a week in a special education class so she's been in an inclusive and non-inclusive setting. Oh, great she just did another modern art masterpiece of poop on her window. Stuff like that makes me think how hard it is to educate her. I want her educated but not at the expense of every other kid in her class if she really becomes a serious disruption. I don't want her isolated from other kids for the rest of her days in school in some windowless classroom like she is now in the public school. At this point I think she can learn from her peers in the mainstream but if it becomes counterproductive I'll consider alternatives.
What about homeschooling? Lack of proper training and the energy-draining aspect of 24 hour care may make this option undesirable. We can't do this not without a 50% cut in income and then not having the energy to help her little brother. I wish I didn't have to deal with autism period and just complain like other parents whose kid got a "B" or didn't make the team. Of well, I still have people tell she will grow out of autism like other kids have. That's the good old American can-do positive attitude but what happens when your kid can't do?
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