My eight year-old son has completed his first year of mainstream education at the local school, after having being in a Special School for his first two years. There are so many good and bad aspects of mainstreaming him, in terms of what is in his own best interests; I guess the most I can say with it all in mind, is that we made the overall right schooling decision with the options we had available. But there is something I can say with more certainty: mainstreaming my autistic son is burning me out.
When he attended a Special School, all his therapies were built into his daily learning curriculum. We would work on the same therapy areas at home, but the plans and expertise and key implementations were coming from the professionals that interacted with him everyday at school. Furthermore, they were in constant contact with each other through the school system, so all his areas of need were quite well-coordinated (the physical, with the social, with the communicative, etc). Twice a year I would meet with the head teacher who oversaw him each day, to go over his achievements and identify more areas for improvement. Every day I was able to communicate with her through his notebook, and she and her team were very understanding and well-informed on what would help solve arising issues.
At his mainstream school, he has no therapists. There are no autism and other experts at my fingertips each day. I feel like someone cut a bunch of strings that were connecting me to knowledge and insights, and now I’m just some surprised string-less puppet who has had to learn how to do it all by myself. Now I have to identify areas that need work, I have to find solutions, I have to keep a constant eye that they are being adequately implemented. These are things I have always being part of, but now there’s no one to turn to to ask “am I doing this right?” and expect an experienced and expert answer.
My son has ended up in the oddest situation where he has lots of support within his school – in fact it looks like too much support – but none of it is really or effectively helping him with his autism challenges (as far as I can see). The support appears to be more focused on relieving the teacher to free her up, since my son can need more time than other children, or more generally, on “managing” my son. Of course I understand the value of this support, but it seems teacher rather than student oriented; it feels like it’s not about advancing or improving him. I attend lots of meetings about him, talk to his teachers and support people, but I feel like we’re just treading water; we say the right things, we tick the right boxes, we smile at the right time to the right people. We make charts and we pat each other on the back over the small successes. We’re doing this right according to the rules and regulations. But I’m dealing with the fallout behind the scenes and I feel like screaming with the utter frustration of it.
I want his therapists back, I want the expertise back, I want people who understand that his home life and his school life are intertwined; what they do with him at school impacts heavily on what we have to put up with at home, and we always get the worst of it at our end.
To compensate for the lost therapists, I do a lot more with him at home, but half the time I don’t know if I’m doing it right or should be doing it at all. I buy him resources on social skills and work on them with him everyday and take him to social skill classes after school. I try to figure out where his new anxieties are coming from, and what to do about it. I work on his socially-isolating stims, wondering all the time whether I am wasting my time trying to counter them, and whether I’m doing the right sort of countering to the right degree at the right times. I wonder weekly whether we should have him on meds for the anxiety, and have no one on hand to talk to about it; our regular access to his developmental pediatrician was through the school. I am in the constant cycle of identify issue, find solution, address issue, try different method, etc, but with no one on hand to guide me anymore.
Through this whole thing I’ve felt a loss of control over his schooling and therapies and social interactions, compared to what I used to know and have a say in. I wanted to be more included and knowledgeable about his schooling, beyond what was available to me, which is what drove me to run for and become a member of the school’s Board of Trustees. But all that’s really achieved is a higher work load for me, more stress, and no gain on the front of feeling more in control of his schooling (not yet anyway).
I can’t even say that I believe his actual education has improved having moved to a mainstream school, in truth I feel he has slipped backwards in some regards. The heavily personalized, intensive and tailored attention he received at a Special School was not just benefiting him around his autism challenges, but also bearing fruit for his standard educational achievements. I am so aware and concerned about this (perceived) lack, that I have taken on actively teaching him subject matter outside of school hours, which is happening to such a degree that it notably impacts on my time, energy, and finances. Of course I extended his education when he was at Special School too, but back then it just felt like actually extending him, rather than trying to teach him the basics I feel should be coming through the classroom.
So one year in to this mainstreaming experience, I am increasingly concerned and tired. I can already see the possible need to home-school him years from now, particularly when his current issues become more obvious and less “acceptable” to the children around him. I feel like all this extra therapy and education work I am having to do, is turning out to be practice for something that will only become more intensive. And yet, for all this, I still feel we made the right decision to mainstream him instead of leave him at the Special School considering the developmental point he had reached; the problem, rather, is with the options I was presented and the failures in the way mainstream schools are resourced. I’m going to have to aim much higher than “Board of Trustees” if I want to see that change come about.
In the meantime, I’m trying to focus on thinking only one year ahead. Each year I will – as I always have – re-evaluate if the school he is in continues to be the best for him. I will continue to work with him at home, ever mindful that no matter how burnt-out I get, my job as a mother includes not letting him get burnt-out alongside me; just because I’m getting exhausted, doesn’t mean he has to be. For all of this, he is still only an eight year-old boy, who needs and deserves fun and down-time like any other child. Like any other human… like me. Maybe I’ll get some in next year.
And on that note, I hope you all have a good New Year, see you in 2014 🙂