This ‘In Their Own Words’ post is by Susan Senator, a writer, activist, and the mother of three boys. Susan is the author of ”Making Peace With Autism,” and “The Autism Mom’s Survival Guide.” Please visit Susan’s website for more of her blog and other resources.
I was looking for a place to toss a shovelful of snow that I’d just dug up next to the car when I thought about Nat. Nat was still at the group home, but we had told him that as soon as the snow stopped and we were dug out, we’d come get him. I threw the snow right or maybe left — we are really running out of space and the drifts bordering the driveway are about five feet high by now — and I imagined Nat and his brothers shoveling.
We are all really good at shoveling these days. I pictured handing the shovel to Nat and seeing him push it down and push the snow aside. No problem. But it used to be. Such tantrums! He couldn’t be outside with us. And if we left him inside, he’d freak out in there, watching us working outside. The horrible feelings I had, knowing I couldn’t be inside or outside. There was no place to go, no place to be on this earth because my child was so unhappy and he could not understand what was going on.
Now he shovels snow willingly and competently. Yet another skill, another feather in Nat’s cap. How did this come to be?
We made him do it anyway. We lived through tantrums. We had shoveling (shopping days, movie outings, parties, holidays, vacations, meals, sleepless nights) days that ended badly. Nat has been exposed to a lot of activities. It’s as simple — and difficult — as that. The more Nat experiences, the more he is able to do. As soon as we realized that we needed to familiarize Nat with as many things as possible, we started to take him out, make him be around people and go to new places. It was almost always really, really hard. We tried a Cape Cod vacation: terrible. Each year, not as much. Stayed with my parents: it got better. Switched to the ocean, rather than the bay side and brought boogie boards: success. Still difficult, because he walks in circuits and ends up too close to others’ blankets. But still, we enjoy ourselves for a lot of it. Not all of it, but enough.
Challenger T-ball; failed. A year later we tried Special Olympics gymnastics: success. But bumpy success. Nat sometimes slapped people or had tantrums or spaced out. We stuck with it. Or rather, Ned did. I’m the coward of the two of us. I find out about stuff and dream things up, but Ned very often ends up following them through. You gotta have at least one parent who doesn’t mind people staring, or an occasional pinch. I think that even if you are a single parent, you should find a way to have a second person around sometimes.
Vacuuming. Food shopping. Parties. Shoveling. We took Nat places. Even for abbreviated visits and outings. Because even if he had tantrums during the event or activity, it was becoming a part of his repetoire. Stored data. Information he could draw on for the next time. If there was a tiny seed of it already there in his mind, no matter how sharp and horrible that experience had been, it was now lodged there, resting in his gray matter. And that is the most fertile ground there is.
“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to email@example.com. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.
This post is written by Liz Bell, mother of Tyler Bell, who was recently featured in an ABC World News Today segment on preparing adolescents with autism for adulthood. Liz is married to Peter Bell, Autism Speaks Executive Vice President of Programs and Services. They have two other children, Derek and Avery. Liz is a member of the Autism Speaks Family Services Committee and was the primary author of the School Community Tool Kit. In addition, she serves on the Parent Advisory Committee for the Autism Speaks Transition Tool Kit which is under development and scheduled to be launched this fall. Liz is also a representative on the New Jersey Governor’s Council for Medical Research and Treatment for Autism.
Great, we might share the intense teaching and planning required in making the future of a young man with autism a little less uncertain. We can highlight the variable needs of this growing tide of soon-to-be adults with autism.
But “yikes!” How will my 17-year-old son behave in front of complete strangers with a camera in his face all day? What if this complicated message gets garbled, highlighting the challenges but not the gifts, the needs but not the opportunities?
Thankfully, Tyler greeted that camera with a grin on his face, and followed the flow of a familiar daily schedule in his hard working, innocent way. The ABC team turned eight hours of filming into a three-minute segment that helps to profile the needs of young people like Tyler, and hopefully initiates consideration of their place in the world. Now online, the story has sparked a conversation, which is a great thing.
But we need to keep talking. Some online comments outline the variable needs of the autism population – from college graduates who have trouble keeping a job to complex children with no language and few functional skills. We need options for all individuals on this broad spectrum. Other comments offer traditional ‘solutions.’ He can get Medicaid, sign up for get SSI, set up a special needs trust. True, these programs may provide some money, until it runs out, but how do you maximize its ability to provide a meaningful life, to establish supports that will take over once we are gone? You can place him in a sheltered workshop or a group home. Perhaps an option for the handful of individuals for whom there is space and funding, but this old model of isolated care won’t accommodate all of our kids…or be what they want. And that is the part of the conversation that we really need to move forward. How do we create the systems, opportunities and community mindset that will allow all individuals with autism the right to be safe, but also engaged, fulfilled and happy?
During that day of filming, while the rest of us were self conscious, for Tyler the camera was superfluous. But the cameraman was not, quickly noticing that, despite how hard it clearly is for Tyler to learn, he exhibits pride in accomplishment. For him, competence breeds confidence, so we teach him skills that make him feel useful and valued. We strive to fulfill his needs for humor, exercise, beauty, and joy. We want to develop a future that will allow Tyler to grow, not just to be taken care of, and to flourish.
Visioning this is a lot of responsibility for a parent, so we employed group brainstorming in a MAPS session, expertly facilitated by Dave Hasbury of Neighbours, Inc., where we explored Tyler’s strengths, likes, and possible opportunities, to keep us working in what we hope to be the right direction. We are heartened by a team of people who now have a shared perspective of where he might go.
But it is still mostly up to us to make it happen. We learn as we go. We build on strengths and we layer on, tiny step by tiny step, experiences and skills that help to create more independence, more joy. We immerse Tyler in the world and build a community that better understands him. We look to what motivates Tyler, and find ways to use his gifts to provide meaningful contributions to society and a sense of belonging. We reach out for help.
Last year, we asked the friendly owners of our local Rita’s Water Ice store if Tyler might have a volunteer job. We explained that job sampling is a big factor in strategizing for Tyler’s future. Since they had already opened their hearts to Tyler as a frequent customer, they gave him a Rita’s hat and the chance for us to work with him, as he worked for them. This year, it’s a paid job – just an hour or so a week, but an opportunity to punch a clock, have a boss and be ‘professional.’ Does he do the same work as the other teenagers there? No, but they value his smile, the fact that he joins them in dancing when they are so moved, and that he doesn’t pull out his phone to text in the middle of his shift. Yes, these are gifts, as is the perspective of Tyler’s Rita’s bosses, who recognize and celebrate his contributions.
And so Tyler earns a paycheck, the most important predictor of paid work after graduation. But he doesn’t work for that – it’s his favorite Cotton Candy water ice that compensates him for a job well done. And his pride.
After the filming, the rest of our family decided that we aren’t cut out for reality TV – life is complicated enough without having to turn off a mic to use the bathroom. But we would like to continue to be part of this conversation, in visioning meaningful lives for all families living with autism. After all, our children have a right to an amazing future.
In a story scheduled to air tonight, ABC World News Tonight with Diane Sawyer will feature Autism Speaks Executive Vice President of Programs and Services Peter Bell and his family in a segment on preparing adolescents with autism for life as adults. ABC recently spent the day following Peter and his wife Liz at home as they build a transition program for their 17 -year-old son Tyler, who has autism. The segment will highlight the challenges many families face in preparing their children for adulthood when educational entitlements go away and services are limited and opportunities are few. For more information on what Autism Speaks and other organizations are doing to improve the outlook for adults with autism, please visit Advancing Future for Adults with Autism.
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