Shannon Des Roches Rosa
Summer. Now there’s a word that terrifies parents of school-aged kids with autism. We do not necessarily associate the word with “break.” For us, summer means potential implosion of carefully orchestrated school, services, and respite schedules — and the resulting scrambling and scraping to make new arrangements.
My son Leo’s last day of fourth grade was Friday, and I am fretting. He is in such a beautiful space in his wonderful new school — progressing on his IEP goals, excited to get on the school bus every morning, arriving home trailed by email reports of successful, action-filled classroom days. Getting him to this point has taken months of routine-reinforced effort. I’m worried that summer will undo it all.
Children with autism work hard to gain skills during the school year, and that learning can quickly slip away without ongoing, reinforcing learning opportunities. This means our children need a summer full of structured learning as well as entertainment. That often costs extra, and is generally not part of typical summer camps or daycare.
Many families simply make do and keep their kids at home all summer long, become their child’s summer school. Some even have to hoard all of their vacation hours for this privilege. And as much as I would like to assure you that we are all saintly people who accept this opportunity with grace because we are never given any more than we can handle, the truth is that not all of us have the skills or personality or stamina or resources to provide the kind of summer our kids both need and deserve.
So many wonderful people try to support kids with special needs during the summer. There are about five million summer camps for our kids. Many are even free. Our own town’s parks and recreation department has a program to include special needs participants in regular summer classes or camps — and does so free of charge, depending on volunteer availability. It all makes my candy heart go thump-thump.
Except my son Leo needs more than an enthusiastic volunteer. He needs an experienced aide at a camp that can handle truly challenging behavior. Those camps are elusive. There is only one camp in our region that can accommodate Leo, and while it’s wonderful, it’s expensive. Our regional center does offer funding for one camp session, but families who choose that route have to give up respite hours in exchange. It’s not an option for all the local kids with intense autism.
Parents of kids in unilateral placements are in an especially tricky spot. If summer camp services don’t exactly match what the private school provides, the school district/Department of Education can use the summer arrangement as ammunition in an Impartial Hearing. This further limits our kids’ summer options.
We got lucky. Leo started a full week of summer camp yesterday. His school provides four weeks of summer school, or Extended School Year (ESY) instruction in his current classroom, with his current teacher. He will continue to receive services during that time: 1:1 aide, speech therapy, and occupational therapy. He may not even notice that summer has struck.
Then he has four weeks between the end of his ESY and the resumption of his regular school year. He will be at camp for an additional weekend during that time. He will get twelve hours of respite care per week (for which we are grateful) during the other five.
The rest of the time? He is mine and I am his and we are all together.
It’s not a bad arrangement, as family togetherness goes. I enjoy our unstructured time together. Leo can be unpredictable and stubborn, but he’s also adorable, fun, and never, ever boring. He’s also a good travel companion — we built up his travel and outings tolerance with short trips and excursions to Maker Faire, Salt Point State Park, Castle Rock State Park, and the Exploratorium. As he got more comfortable with travel thanks to detailed planning, we took road trips to my visit my mother in San Diego, an even managed an overnight boat trip.
The problem with mostly-mommy-most-of-the-time: Leo is used to 1:1 supervision and engagement all day long, and I can’t possibly provide the kind of routine and stimulation he craves, no matter how many camps and grandparent visits his sisters get shuffled off to. I try to keep Leo occupied, and I have a lot of support, and having an iPad helps, but I still worry that — as has happened in summers past — it won’t be enough, and Leo’s behavior and abilities will keep disintegrating until school resumes at the end of August.
So, understandably, I’m scared of summer. But I also think it has a lot of potential. It won’t all be minefields.
I work flexibly and from home; I’m always here. That itself provides sameness and routine. Our house is a known place, a reassuring place, a good place for Leo to be when the days are long and warm. He has a pool, a trampoline, swings, and room to run around. He feels cocooned and happy; putting almost every last one of our eggs into this domestic basket has paid off.
My self-taught super swimmer boy will be spending many hours basking in the backyard waters this summer, and I’ll be right there with him, one on one, soaking up the sun while I marvel at my son. You’re welcome to join us, and see how we’re doing.
A version of this essay was originally published at BlogHer.com.