I’ve written before about the importance of connecting with other parents of special needs kids. On days like yesterday I really feel it. It helps to feel a sisterhood or brotherhood with parents who have similar challenges, even if they’re not exactly the same.
Yesterday, though, I was feeling particularly challenged by the school refusal thing. A friend asked me, “Hasn’t the school had kids like Maddie who also refused to go to school?” My answer: “I don’t know.”
Throughout our experience with the public schools, it always appeared to me (and to my surprise) that Maddie just stumped her teachers. I thought for sure that the teachers who’d been working for 20 years or so must have seen it all. But she always presented as an enigma, and nobody knew what to do with her. Even at her special school, in which every single teacher has a credential in special education, she seemed to be a special challenge in some ways. I think it’s the dichotomy of her natural abilities and her failure to perform, and how her ability to perform fluctuates wildly from one day to the next . Even so, is she really the first kid like this?
When things go particularly awry, my best coping mechanism is to feel useful, to actually do something in an attempt to make even a minute change. So yesterday, when I was feeling especially defeated and somewhat hopeless, I spent much of my time trying to research boarding schools for teens with Asperger’s. It was a waste of a few hours. There are very few schools, and most of them also take kids with emotional and behavioral issues. I don’t think that’s the right environment for her. So that was an unsatisfying endeavor.
Then I changed course and Googled “my Asperger’s kid won’t go to school.” Maybe I’m jumping the gun on the boarding school thing, I thought. Maybe somebody else can shed light on a solution or at least their own experience. Most of the information about this phenomenon (called “school refusal”) focuses on social anxiety and other emotional factors, such as coping with bullying, that might contribute to attendance problems. I know Maddie. That’s not what’s going on. She’s tired in the morning, home is relaxing, and given the choice, she’d rather not do anything at all. Well, she’d really prefer to watch TV or play Minecraft, but even though that was out of the question, staying home is just easier. I’m not saying the transition from a tiny special school to a bigger public school isn’t cause for some trepidation, but I am confident, as are her teachers, that she is more than ready for this. She just has to do it, and give herself time to adjust.
I eventually discovered a website called <myspergerschild.com>. I read its article about school refusal, and as I scrolled through the comments section, my heart nearly exploded. A mom wrote in about her own teenage son. He also refused to go to school, simply because he didn’t want to. Finally, a kid just like mine! Here is what she said:
My son is 15 with Asperger’s and also school refuses. I also do not think it is [social anxiety] – he just doesn’t want to go to school. He doesn’t see the point and no amount of discussion will change his mind. He is another one who is 6ft tall so there is no way you could get him there against his will (and I don’t think that would be appropriate even if I COULD just pick him up.)He currently attends a small support unit with only 10 other students and all the understanding you could give a child but some days he just doesn’t want to go in.There is no fear there for him, and no attachment problems as he happily would go to his friends’ houses. The way I see it, he weighs up rewards and costs. Some days he wants a reward (eg cinema trip) enough to go in, and on other days you could offer him £500 and he wouldn’t budge. Although he’s very clever, the promise of a good GCSE result seems too abstract and too far away to be a motivator at this moment in time. He thinks he can learn anything important and worth knowing,from a computer or the TV. Of course, none of this understanding actually helps get him into school or gets him the results he’s capable of or gets the LEA off our backs when he doesn’t attend! Also, being threatened with court action for non attendance makes life very stressful for us but makes no difference to him – he has AS, he would only notice when the internet gets cut off or his dinner wasn’t made!”
Seriously, this is Maddie (except she’s much shorter). The weighing of ewards and consequences and near immunity to both, the inability to grasp anything that’s delayed because that’s too abstract, the rigidity in her thinking.
I wish I could identify the writer. I want to talk to her. I want to hug her and thank her for speaking up. Even though she doesn’t offer any solutions, it feels so much less lonely knowing there’s somebody else out there with the exact same problem. It’s so comforting. She’s obviously in the UK somewhere, too far away to meet. I would bet there’s somebody who lives close by who is having a similar experience. I hope to find them. I hope we can help each other somehow.
So in the absence of a solution, I was at least given some peace in knowing we’re not the first, not the only. And then today happened. She got up and went to school.
The Year of Living Hopefully 
I have so enjoyed your blog! My husband and I feel as though you are facing many of the same issues with your daughter as we are right now. Our daughter, Martine, is 13 and is high functioning autistic. We’ve recently moved to the East Bay from Sacramento to Martine to attend a small private school for middle and high schoolers in Lafayette that specializes in working with Aspergers/HFA and other non-verbal learning issues who present social and executive functioning challenges. This is her second year, and while its a tremendous improvement from her public school placement, she is certainly giving us plenty of behaviors and challenges. I SO get the problem with lack of motivators, the perseveration, and the HOURLY changes in mood and compliance! Crikey!!! Anyhow, I would love to get together if you would be up for that. As you mentioned – sometimes it just helps to know you’re not alone out there facing this kind of junk. I wish you a good day. I know they are precious few and a real gift when they happen.
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Anne,
Thank you so much for writing! It is such a challenge, and it’s hard for people outside of this realm to fully grasp the experience. I am in Marin. Would love to meet you sometime. Maybe in Berkeley? Fourth street is about half way between us.
Best wishes for a good year for Martine.
Chris
P.S. I’m from Fair Oaks! Also, wondering how you found my blog? Thanks!
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“Throughout our experience with the public schools, it always appeared to me (and to my surprise) that Maddie just stumped her teachers.”
I had much the same experience when my Aspie son was struggling through the local high school. The Special Ed people there (hello Dr. Green I’m looking at YOU) acted like they had never dealt with a single disabled child, let alone a whole town’s worth. An uncooperative special needs kid! I mean, who knew? It felt as though this feigned helplessness was a technique to isolate me, and perhaps it was.
This also felt like an attempt to throw responsibility for whatever was going on back at me. Not the kid, not the teachers (who were supposed to be running these classrooms), but ME, and I wasn’t even on site! Pat would do something or refuse to do something and they were simply aghast (or pretended to be aghast) and then looked at me. Not, “oh we have seen this before and here’s how we handle this kind of thing,” or just “we’ll take care of this.” It took me a long time to get to the point where I would think, “these teachers are professionals, moreover they are specialists in this area, and it is beyond my ability as a practical matter to run their classrooms for them,” and then not intervene and wait for them to do their jobs. Which they, as it turned out, were usually perfectly capable of doing. They HAD seen this kind of behavior before (whatever it was this time), and they DID have ideas about how to handle it, and mostly things came out just fine. I suppose it is only human to try to get someone else to do your job for you if you can find someone on whom you can push it, but my advice is to resist being that person.
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Very interesting…and frustrating. I remember when my daughter was maybe in second grade and the head of the resource department referred to her as both “odd” and “stubborn.” I didn’t even know what to say about the “odd” comment, but the stubborn thing I was pretty POed about. I mean, sure she’s stubborn, but it wasn’t just for fun. She was digging in because something was really challenging for her and she didn’t know how to cope. It’s a LOOONNGGGG road through the school years. I used to leave every single meeting trying to hold back tears. Usually I couldn’t. So hard. Good luck to us all!
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Hello, I found your blog through a post on the Redwood Writers list serve. So glad I did. Our child’s challenges don’t fall into the same diagnosis, yet we had similar behavior to overcome, daily. School refusal started in second grade (due to a class bully). We went nose to nose with the support of teachers with the child’s parents. Eventually our girl felt safe again. Too bad children with huge challenges end up as victims of those who secretly take advantage of fear, lower social skills for age groups or poor self esteem. We battled it, at home, and at school.
We did huge interventions with our child, over the years, and I battled public schools for resources and accommodations. Amazing, now looking back. We received great help from a program called “Tough Kid Parenting,” which was presented at our counties behavioral health facility. We were provided with a textbook and a workbook. Although we had done much investigation of a dozen methods, the “Tough Kid Parenting” turned out to be the most comprehensive for myself and my husband. We not only kept up behavioral rewards charts and rewards, we learned to firmly stand our ground and broken record repeat those things that where central to her growth. “Time for school,” or “Time for bed” or “Time to put down the computer mouse.”. Standing like a tree about three feet way and insisting on compliance turned out to take bravery and the patience of a saint, but turned out to be far easier than having constant battles.
Best of all, I joined a spiritual center and asked for prayer each day. I took workshops to expand my love and peace.
Parenting a differently-able challenging child can be turned into your own spiritual enlightenment or help you become an activist for children needing more than the limited and thin education given to students in the USA.
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Thank you so much for writing! I’m so glad you have been able to find help with your child and with your own sanity. I agree especially about your last thought – that this journey can “be turned into your own spiritual enlightenment or an activist…” Absolutely. I have learned so much about life from my parenting my daughter and from my daughter herself. Best wishes to you!
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Hello, thanks for replying to my comment. Our daughter also taught, and is still teaching us much, about love, unconditional acceptance and choosing peaceful ways to live.
May all your family and friends be blessed by and through your challenges & love!
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