Last week, as I was driving across town to Oscar’s school to pick him up and take him to his weekly OT appointment, I heard the start of NPR’s Talk of the Nation. Neil Conan was introducing his guests who had researched and written an article in an upcoming issue of The Atlantic about the first generation of children diagnosed with autism. Their aim was to see how these children had fared later in life, to see what insights could be gained into how adults diagnosed with autism as children cope once their parents are gone.
I was fascinated.
The first thought that popped into my head as I listened to the introductions was one of excitement and possibility: “I wish I was a researcher. I’d love to get immersed in that question.”
My next thought was one of regret: “Who am I kidding? I don’t have time.”
Lately I’ve noticed that I seem to be searching for some sort of path in my life -- some clue as to what I want to do next, and some hope that I’ll actually have time. After nearly ten years of doing the disability shuffle and twelve years of total parenting I’m so busy tending to everyone else’s needs that I’ve lost track of my own goals. I take care of myself in little ways – squeezing in a long walk, meeting a friend for coffee, occasionally reading a non-disability related book, but I feel the years starting to whiz by while I discuss typing programs and positive behavior reinforcement and devise systems for sensory breaks. With all the appointments, meetings, emails and phone calls it takes to raise a child with a disability, I’ve lost touch with who I want to be.
In my former life I was an actuary working in pension benefits consulting. I created complex spreadsheets and got days off of work to study for math tests. I loved the math but I didn’t love the “big picture” so I became a graduate student in city planning focusing on transportation finance. I used to really care about how gas tax revenues were spent and wanted to see higher tolls instituted on bridges during peak travel hours.
And then Oscar was born and I was rocketed into the special needs world with nary a backward glance to my own interests.
Just two minutes into the radio program about autism I arrived at Oscar’s school. I parked the car, punched in the gate code, and rushed up the stairs to his fourth grade classroom. It’s always a scramble on Wednesdays to transition Oscar out of the classroom and into the car where he eats lunch on the way to OT. Oscar was putting away his science materials when I arrived, but stopped to show me the activity he had just finished – it turns out that a paper clip can stick to a nail if you touch the nail to a magnet. I listened while also trying to talk to his teachers about homework and an aide substitute for the following week and help him pack up his bag. We only had ten minutes to get to the OT appointment so I was definitely coaxing Oscar to speed it up.
In all the rush, I forgot about the autism program and was only reminded when the radio came back on as I restarted the car. The authors were now discussing Donald T., a man in his late 70s who was the first child diagnosed with autism. Donald was considered to be severely autistic as a child and was even institutionalized for a short period until his parents, who were both strong advocates and wealthy, pulled him out.
One of the authors, also the mom of a child with autism, marveled at how much Donald T. had changed over his lifetime. He still exhibits many characertistics of his autism diagnosis, but Donald now lives independently, plays golf, and travels out of the country every month by himself. She didn’t think he would have thrived if he had lived in a big city or in an institution. His individual wiring, she felt, along with his parents’ resources and the protection and compassion of his small town community are what allowed Donald to reach his potential.
This last comment about the role of Donald’s community in helping him reach his potential brought me to tears.
I’ve advocated fiercely over the years for Oscar’s placement in a small independent school in our town. Most of the reasons for this placement revolve around food -- in short there is too much emphasis on and access to food, healthy and unhealthy, in our local public schools for Oscar who has Prader-Willi syndrome.
But, just as important, is the community-wide academic and social support Oscar has received at his small school. Oscar’s teachers implement an engaging and hands-on developmental curriculum that Oscar is excited about and can participate in at his level. Oscar’s sixteen classmates, largely the same ones he’s been with since kindergarten, have grown over the past four years to know and accept his strengths and his quirks, much like siblings. I have talked openly with these kids about Oscar, always thinking that they will want to vent about the more challenging parts of the disorder – perhaps the stuttering, or the slow processing or Oscar’s strong opinions. But usually they steer the conversation to ways to pull Oscar into games and conversation more seamlessly. These kids understand that inclusion is far more than just not excluding. They understand acceptance.
Last year, in the class play, the kids took turns very subtly cueing Oscar – holding his hand to enter the stage, exaggerating their own gestures for him to copy, and gently tapping him on the shoulder when it was his turn to speak. I’m pretty sure no one instructed them to do this – it’s just what they do. At our PWS fundraising walk in April, one of Oscar’s classmates came with her dog and the two of them walked the entire loop together, talking and talking. Two weekends ago Oscar marched in the town parade playing the bombo with the Latin American youth ensemble that he joined three years ago. Kids from his class happened to be at the parade and they waved and shouted “Oscar! Oskie!!” while Oscar smiled back, marching confidently down the crowded street. It is hard to believe that fourth grader Oscar is the same kid who in kindergarten sat through school community meetings with his hands covering his ears, who hid under the table and refused to draw when the markers came out, or sat on the teacher’s lap when the class performed a song.
I credit this school -- his teachers, the staff and certainly his classmates -- for creating the kind of compassionate learning and social environment that has allowed Oscar to thrive, to gain confidence in himself, and to reach his potential in a way that I really never dreamed possible when he was a little kindergartner.
When I think of Donald T., the first child diagnosed with autism, now sitting as he does every morning having coffee with his cronies, I know that all the advocating, scaffolding and support I provide to keep Oscar in this small school and active in our community, has been worth it. I may not have found my path yet, but it is certainly consolation to know that what I am doing might benefit Oscar well into adulthood.
Mary lives in Northern California with her husband and three kids. She blogs at Finding Joy in Simple Things even when she should be returning phone calls and replying to emails.
It's stunning -- what you've written about -- the outcomes for those who live in small, supportive communities versus those in big cities -- it makes me nervous, obviously, as a Los Angeleno. But I'm struck, too, by your "path" and how we as mothers keep to this different path with our sights also on that other, almost lost path.ReplyDelete
I have found it different here in small town than those who's stories take place in big ones. We don't have the issues with people or the children. I didn't want to move him, b/c of the children. Unfortunately we still have the games of living within the "system" (school and medical), so choices had to be made. So far, we're happy with the changes.ReplyDelete
But, if you live with a disability, IMO small towns are a better place to be.
Wow Mary! What an achievement.ReplyDelete
We were able to do inclusion in the early years, but it never really met Ben's academic needs (we chose socialization over the learning program).
In the later years, inclusion wasn't even offered as an option.
I'm deeply troubled about this.
I am touched to read about the real inclusion that has happened for Oscar. Congratulations!
I loved that article and the video embedded in it. Such a positive story. I can only imagine how hard it was for parents back then. May we all find such community support for our children.ReplyDelete
Hi Mary, I know just what you mean about finding your path. I too struggle with finding the time to enjoy another part of life, another part of myself...just for myself. I wonder if there is another way to define who I am other than being the parent of two beautiful children. I also think every day about what the future will be like for Nicholas, your post gave me hope! Thank you! Thank you also for the warm welcome. It is a little scary "putting it all out there" I appreciate your support.ReplyDelete
Thanks for all the comments!ReplyDelete
I think this program/article really resonated with me because middle school is on the horizon and I'm wondering if we should, or are going to need to, shift away from an inclusion model. I'm feeling a bit lost/scared/sad about that because it's clearly been beneficial up till now. And of course, I feel like addressing this question will only steer me farther from that lost path over the next couple of years.
I also did mean to say that I think we can create "community" for our kids even in big cities. We are not so much in a small town as participating in micro-communities within our larger area. I'm hoping we can keep finding ways to do that.
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