What About School?

Filed Under (Autism and Learning, school) by Estee on 30-06-2011

There is a lot of change facing Adam again and I, as his primary care-giver. After all the years of worrying about schools, I see that we may have a variety of options that may require us to re-juggle our days. I knew this day would come. I wrote about many things regarding schools and it’s not easy to be in the midst of it and have an opinion at the same time. The process of evaluation has now begun: the eclectic ABA school, the public or Catholic school, the online/homeschool options are on my list. Don’t you just love when people think that there is a rainbow of autistic schools out there that actually suit every autistic child on the planet?

The road called “evaluation” is filled with opinion and advice. Everyone has a thought about what’s best. I am taking each word in and processing it slowly. Although September is only two months away, I know this cannot be rushed. This requires a lot of questioning about what’s best for Adam, for his autistic learning style, his levels of anxiety as well as his other interests and needs. I have been making long lists of my assumptions versus the reality of how Adam will best grow, and grow happily.

School is a tricky thing. We tend to view it as the ultimate socializer for our children and a place where they should get everything they need. For any child, I tend to want to question our way of thinking about school (and sure, of course, making this a whole lot harder on myself, as usual).

The United Commission on Human Rights Statement on the Right to Education, written in 1999, reads:

The core human rights standards for education include respect of freedom. The respect of parents’ freedom to educate their children according to their vision of what education should be has been part of international human rights standards since their very emergence.

In her book Home Educating For Autistic Children: Paths Are Made By Walking, Terri Dowty and Kitt Cowlishaw write:

We all know just how difficult it can be to reclaim the responsibility for our children’s education — or to decide not to relinquish to a school in the first place. Parenthood is riddled with guilt, under-confidence, and a sneaking fear that our children might be better off in more qualified hands…

A child is to school as bread is to butter. Perhaps that was true to some extent in the days when knowledge was a restricted commodity; however, we now inhabit a world where access to information on any subject imaginable is only a library ticket or a mouse click away. As society changes, the sacred cow of education has come to resemble a rather less exotic domestic beast, prompting thousands of parents to take the leap of faith into providing it themselves, in co-operation with their children.

I have to decide soon what is best for Adam’s day, which could be a combination of things. I will be dedicating my summer (and I’m sure other falls and winters) to this. I can relate to the pressure of outside opinion, or the preconceived notions that being in school is better without really thinking about it deeply. Probably, like all things, a little bit of everything is true.

The one area I wonder about, is that autistics do better when they are socialized in a school setting. Certainly, for most autistics, this becomes the only place where they get any socialization, but school programs aren’t always set up just to work on social skills or even just to be social in an autistic way. Again, what kinds of programs are best suited for the autstic person? Where do we all get our social fix? Does this all have to happen in school?

Autistic people are not always wanting to be social in a typical way and it’s not always fair to assume that they must have our same skill set. Yet, it might also not be fair to equip an autistic person with the skills they may require in order to feel like they can at least manage friendships with neurotypical people. This is so tricky and we need to acknowledge that it is and be careful with autistics so that we do not bombard with just neurotypical ways.

Regarding school as the primary source of everything, Dowty and Cowlishaw continue:

We are now so ready to accept that school is the means by which children become socially competent that it is tempting to wonder how society managed to advance beyond grunting until the advent of compulsory mass schooling.

I’m one of those parents, like thousands of you before me, who are pushing through the bush of assumption about what school is and what is best for Adam. There is confusion for everyone out there and even more so for autistic people who have even fewer options.

A Breeze of Good Feelings

Filed Under (Acceptance, Adam, Art, Joy) by Estee on 14-06-2011

I’m going to ramble about good feelings. Following the shock of last week — hearing that Adam’s class was going to be dismantled — I felt like I was in another hurricane. That short story ended quickly, though, as the school came through to accommodate Adam for next year. They too understood the tumult he has been through. For me, it was a wake up call to our future. It’s not that we don’t know something’s coming, right? It’s interesting how something has to happen to get us to the next level. The occurrence reminded me that it’s time to leave the past behind, and get back to learning the next phase of advocating for Adam’s needs. It’s also time for him to learn that he’s autistic and what’s involved in that so he can begin advocating for himself. It’s not that I don’t think that he knows he’s different. What he needs is a toolbox of self confidence and skills to be able to stand up to the people I stand up to now as a neurotypical person.

It’s another reason why I love Autistic Pride Day which is on June 18th. I imagine what positive messages we can give to our children while they are growing up (for there are otherwise too few) — that difference is neither good nor bad, it just is. We are all unique individuals with differing needs and strengths. It’s important to be proud of ourselves, even if we have our challenges. We are proud to be autistic, or family members of autistic people. I would like to help empower and enable Adam in this way. A walk next year (as there is little time to prepare this year), would be a wonderful, peaceful way to walk proud.

Change has blown in in so many ways. It is because of times like the school news that I need to celebrate Adam, myself and the people we love. We are losing his aide of seven years and are welcoming a new one into our lives. We’ve hired a new male aide worker on weekends who I hope will become a part of Adam’s life. His team is shape-shifting and I see Adam soon sitting around the table for part of our meetings and later, for all of them as he tells us what he wants to do with his life and how we can best support him. Sometimes all of these changes literally knock me off my feet they are so exhausting, which is why I take as much time as I can to beam. There is love all around and I don’t take it for granted. There is a person in our lives and lots of music and good feelings all around. I no longer feel I’m swimming way off in the deep ocean. I believe I am arriving at shore — or the ship I’ve been building is at least sturdy enough to lead us there.

The really simple things make me extremely happy. The pummels and disappointments — whether they be from our past or about school — make these moments even more special. I can tell we are settling as I can’t wait for Adam to come home from school. I used to be so tired and worried about Adam’s distress. Just last year he was spasming so much he needed an EEG. Now, he saunters into the house with his lunch bag, flicks off his shoes and runs down the hall to the kitchen where his snack awaits. After reminding him to wash his hands, he perches himself at the counter and noshes at red peppers or fruit. If that’s not enough, he’ll ask (lately) for popcorn with vinegar (yes, that’s right). He’ll get the popcorn himself and after learning that pressing too many buttons on the microwave actually locks it, he turns to me and asks, “Popcorn, puweeze.” He is not quite satisfied until I open the package and turn on the microwave. Then, he’ll go into the pantry and grap the large plastic jug of white vinegar. “Vinegar, puwezze.” He hands over the heavy jug so I can pour it on top (yep) on top. He moves back to the counter stool and gets the popcorn from the bottom of the bowl first so it’s soaked, and chews on one piece at a time

I can also tell we are settling by our routines. Adam nestles into my arm at the end of each day while I watch Peter Mansbridge on The National. Sorry, Peter, but you put my son nicely to sleep. Adam his happy to watch with me quietly for a while. Then his eyes begin fall shut slowly and when he’s breathing deeply, I carry him to his bed, even though he keeps getting heavier. As I pull the baby blue blanket right up to his chin, he is grinning with his eyes tightly closed. “Goodnight my sweetheart,” I say. I kiss him and leave the room, remembering myself at his age, just as happy when my mother or father did the same.

I feel like Jodie Foster in Little Man Tate. Sure, we are not as verbally articulate, but we are no less expressive. We understand each other. We have our many ways. Like them, Adam and I lie around and watch the clouds together; and I hold him tight when the lights are low and the house is quiet except for the whir of traffic outside.

Without disturbing too much privacy, I think there are only a few things I can share as Adam’s ally — simply because I need to express these good times — like his love of music, for one. Adam also has some cool dance moves. This is a combination of raising his arms up in the air to swaying them with the rest of his body side to side, to a full on rock on jump and hand flap — and let’s not forget his electric smile. Adam is increasingly adept at piano and tries his hand at guitar (I think he prefers guitar — no lessons involved). There is no question that he has artistic ability (see photo).

This could just be becoming the happiest time in our lives. That’s why the news of last week was so upsetting because it takes so long to find balance and when there are additional challenges with a child, the last thing one wants is more. I know there are more challenges ahead, but today I decide to take in the light breeze.

I was once told when Adam was first diagnosed that this was going to be a “marathon, not a sprint.” Well, after a few years now, I don’t just think it’s a marathon…it’s Ironman. All of the work is really important, especially in a world that still does not fully understand and accept autism, but it’s not everything. It’s not what Adam will remember or what will necessarily trigger his heart. He’s going to remember when I carried him to bed and pulled the blanket under his chin. He’s going to remember lounging out in the yard and watching and naming the clouds with me when I’m gone. I think the work that we do goes without saying, but it’s also important to stop and listen to the music, to experience love. It’s everything.

Wind of Change

Filed Under (Advocacy, Inclusion, Parenting, school) by Estee on 01-06-2011

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Today, June 1st, the winds are blowing strong. I’m not a fan of wind, of things being stirred up furiously into the air. Wind has always made me nervous and I want to be inside. I’m sitting out at the foot of my back door, drinking a Corona, about to abandon the otherwise gorgeous sun. Drinking a mid-afternoon beer is not something I typically do on a Wednesday as I wait for Adam to return home from school. I watch the gold, silent bubbles float up effortlessly. Hundreds of maple “helicopters” pirouette and land gently on my deck, leaving a soft brown carpet for my feet. If only life were as effortless and gentle. A gust comes and the carpet is swept away a new shape is made — they jam in between the deck boards and jut out like a bed of nails. A couple of hours ago, I got a call from Adam’s school. His class, just before summer begins, is being “dismantled,” I was informed. I am dizzy about September. Or is it the beer?

It will take me a while to settle my thoughts as I head down this new path, and to say what it is I want and need to say. This blog keeps me going a lot of the time. It is but one outlet for this autism mom. These days I’ve been using Facebook more because the feedback is plentiful, supportive and the discussion boards can get really interesting.

I’ve also turned to a core group of people. There is the team for your child and the team for ourselves as parents. As a single mother who, with the exception of my supportive parents and friends, must climb mountains for her choices, I continue to learn the value of turning to these people. I’m grateful to those of you, and you know who you are, for being there just to talk as I work out the next climb.

Now, I need another beer as I work out the plan, before I write any more. For the rest of the day, I’m taking off my climbing gear, waiting for Adam’s laugh, and watching bubbles.


About Me


I’m a PhD candidate at York University, Critical Disability Studies, with a multi-disciplinary background in the arts as a curator and writer. I am the Founder of The Autism Acceptance Project (www.taaproject.com), and an enamoured mother of my only son who lives with the autism label. I like to write about our journey, critical issues regarding autism in the area of human rights, law, and social justice, as well as reflexive practices in (auto)ethnographic writing about autism.