When Summer Is Extra-Special

BlogHer Original Post

Summer. Now there's a word that terrifies parents of school-aged special needs kids. We do not associate the word with "break." For us, summer means carefully orchestrated school, services, and respite schedules are going to implode, and we will need to scramble and scrape to arrange new ones.

My son Leo's last day of second grade is barely one week away, and I am freaking. He is in such a beautiful space in the classroom, with glowing reports coming home almost every day about his behavior, compliance, enthusiasm, budding academics.
Getting him to this point has taken months of routine-reinforced effort. I'm worried that summer's interference will undo it all.

Children with special needs 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 parents of children with special needs have the skills or personality or stamina or resources to provide the kind of summer our kids both need and deserve.

A lot of wonderful people try to help us. There are about five million camps for special needs kids. Many are even free. My own town's parks & 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 needs more than a well-meaning volunteer. He needs an experienced aide, and a camp that can handle truly challenging behavior. Those camps are elusive. There is only one in our region, and parents and caregivers have to stake out the camp office overnight to get their kids a spot, like Star Wars fan waiting to see Episode 1. It's not pretty. Teeth get bared. Tempers flare. People are keyed up and desperate. And those families who can't make it to the vigil: single parents, working parents, totally overloaded parents? They're screwed.

We got lucky. Leo will be going to a full week of summer camp. Our school district is also funding 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 six weeks between the end of his ESY and the resumption of his regular school year. He will be at camp for one of those weeks. He will get twelve hours of respite care per week (which sounds like a lot, but verges on palliative for both of us) during the other five.

The rest of the time? He's all mine.

I don't mind getting to spend so much more time with Leo. He can be unpredictable and stubborn, but he's also adorable, fun, and never, ever boring. We've had some recent good luck with short trips and excursions: Maker Faire, Salt Point State Park, Castle Rock State Park, the Exploratorium. If we can remain intrepid and fail-free for the next two months, I might even take him on a road trip to visit relatives in the bottom half of the state.

 Because It Is There

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, 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.


More thoughts about special needs, summer, trips, and routine:

CafeAutism: Why I Hate Summer Vacation
Present Moment: VERY Special
The Iron Chicken: Here Comes the Sun
Jenelle's Journey: Teaching Jack About Different Abilities
The Wonderwheel: Dysregulation, Summer Edition
Hyperlexicon: Disneyland. Really.


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