Why mainstreaming my son is exhausting me.

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.

By 2KS4 via Flickr

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 🙂

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11 Responses to Why mainstreaming my son is exhausting me.

  1. suburp says:

    I see what you mean with exhaustion and especially, with a situation of threading water when it comes to the special support he gets – but that’s going nowhere really. I was lucky to have a really good teacher for almost two years now who understood my request to NOT take him out of class too much but had a lot of persistence – and patience – to really integrate him in class. His academic achievements are stable in mid level, he could do much better but his social problems and the distractions of a classic classroom setting will always stand in the way to that… I worry a LOT now about the new teacher, the new classmates (the yearly mix-up Australian schools do..we escaped last year but now no more..), and the weird low “achievement goals” the special needs unit sets when at the same time not supplying actual individually adapted support for him.. I was quite disillusioned after the first year, this year I feel like telling them that instead of sending me links to parenting courses on the day he got suspended after leashing out at some wannabe (young) bullies…they should learn more about autism (60-70 ℅ of the kids that are supported by the unit ate autistic) and also TEACH about autism to the other kids (I was basically told to shush about it, because kids may bully him for autism..absurd, since he was teased for being obviously different…)
    Been quite a year for us too. I have a few resolutions, and will do what I think is right for my son, like you will too. All the best for you for the new year !!!

  2. ambhannah says:

    This is exactly how I’m feeling – although by the sounds of it I don’t do as much out of school and our time at Special School was a mixed bag. Sometimes Special Schools rely on experience rather than expertise – which can also be wrong. But at least they tried in terms of the curriculum.
    But the exhaustion is something I really relate to. I am still coming down from a year of stress and it will take me the whole holidays to relax. And then what ? It all starts again next year…..

  3. Wife of Jack says:

    For us it’s been three different teachers in one new entrant class. It’s not been too traumatic though, our son is fairly adaptable and the teachers were of a good quality but as a parent the consistency of information sharing was lacking. I had to arrange my own meeting with the new term 3 teacher as it seemed like a transition meeting for my child was forgotten about. Next year I am looking forward to the stability and support of a single teacher.

    Most of the support our son has received has been from outside privately paid for services, although we did have some excellent social and narrative communication therapy for him in place via the school. Some traditional speech also therapy was provided but not enough really. We were constantly reminded that our son was getting more than he really was eligible for in that area but I make no apologies for asking for the support he needs. If other parents can’t get it together enough to advocate for their children then that is not my problem. I suspect this will dry up next year but I will continue to push for help. In fact the support that is badly required for learning now is some therapy for high anxiety levels but I have yet to hear of any help available through the school system.
    Big bonus this year was that the school gave our son the confidence and support to finally complete toilet training. So overall I don’t have to worry as much about him, I think next year I may have to do a bit more tutoring at home with him but he has a limited tolerance for this sort of thing. As you say, some down time is essential.

    So we are very pleased with his progress at school but I agree that the transition from high early intervention support to the mainstream of a regular school can be a shock to the system.

    My only advice would be to maintain contacts with former therapists and use them for advice if you still can.

    Our child is asking to return to school a week and a half into the holidays so I think school is a pretty awesome place in his little world!

    Happy New Year.

  4. Ben had/has learning disabilities that were never addressed. We worked hours on homework. By middle school he hated it and we homeschooled beginning 9th. I demanded NOTHING that he didn’t want to give , and made it 100% accommodating….things he never got at school. Six hours of school, 4 hours of homework…we both were exhausted. We loved summers, and never fought in the summertime. It was so much to put on little shoulders in order to “fit in”. I’m not being much help, but know you aren’t alone.

  5. This post is so powerful. Thank you so much for sharing your honest viewpoints. I am a special education teacher and often get asked by parents about pros/cons mainstreaming. This post was beyond helpful at seeing a parents’ perspective. Happy New Year and Good Luck!

    – Sasha
    The Autism Helper

  6. Tan says:

    Thank you for such an honest and thoughtful post. I found it especially interesting as we approach my son’s fifth birthday at the end of term 1 and while we wait on tenter hooks for the result of his ORS application. You raise so many crucial issues and god I wish there was a solution to them! But you are so right, each day and each year at a time! Our experience with the local state kindergarten was not successful, but we have had an amazing experience at a Montessori Preschool and will continue onto the Montessori Primary school, not what I had imagined, but currently seems the best option. But I already feel the fear of having to homeschool, as do a number of my friends, and it is such a huge commitment, which has a number of financial and personal repercussions – exhaustion being one of them. I wish you and your family all the very best
    For 2014, I really hope it brings more balance for you all. Good luck! 🙂

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