Pathways to Independence: The Sleepover

The sleepover: it is a rite of passage for most children, and even more so their parents.

But it is far more complicated for children with disabilities. Some kids need attention or medical care throughout the night. Others are far more comfortable with their routine and own home. Others have behavioral challenges.

My oldest child, Arlo, is 8 years old. He has Down syndrome. He has a long list of medical needs that are easily managed compared to many of his friends. He is prone to elopement. He has run off at playgrounds and tends to quietly leave a house when no one is looking. He has food aversions. He can be very shy. He sometimes gets upset in new places. He is both sensory seeking and sensitive. He does the trademark “drop and flop” that parents of children with low muscle tone know all so well. Arlo is borderline non-verbal, when he does talk, it is difficult for those who don’t know him well to understand much.

Most importantly though, Arlo is a boy. He is a boy who is in second grade, making friends, figuring out life, growing up.

When he was invited birthday party sleepover I struggled. I want him to keep blossoming into the amazing little dude he is becoming while protecting him because of the challenges his disability presents. Up until this point either his Dad or I had been there at every birthday party, even the drop offs. We know he has some anxiety. We know he needs reminders going to the bathroom. We know he needs help sometimes and it’s a bit much to expect the hosts of a birthday party to keep an extra eye on him.

But this was different. This was a small party at a friend’s house. Arlo has been to their home. The birthday girl’s moms know Arlo well. They understand he needs extra attention. Their daughter really wanted Arlo there and her moms wanted him to be included.

Initially I figured I would just have him attend the birthday party that evening and then pick him up before bed. For some reason it hadn’t occurred to me to ask Arlo what he wants. It is hard to get Arlo to respond to questions a lot of the time, because of this I fail to ask him. But this time he did reply: an enthusiastic yes!

That fateful Friday night arrived. I was surprisingly at ease while packing Arlo’s overnight bag. Did I worry about what his friends might think when they saw he wears a diaper at night? Sure. But I peed the bed well past 2ndgrade, so I figured they might understand. Did I worry he might miss us? Absolutely. But they live nearby so I could be there within moments of any tears or fears. Did I worry he might escape? So very much. But so did the host parents, and they were taking precautions: locking the doors, barricading another exit, and staying vigilant.

The moms sent me text updates throughout the evening. Arlo had a blast. They played, they danced, they put on a performance. Arlo was the first to fall asleep, gleefully next to the birthday girl. I got a text in the morning telling me he was up and singing on the karaoke machine.

We picked him up and he was smiling ear to ear – happy and so proud of himself.

Did everything go perfectly? No. He didn’t eat anything. He needed correcting on some behaviors. He did his own thing for a little while. But isn’t that pretty typical of all kids his age?

Independence. For so many parents, that’s the big dream for our children with disabilities. We don’t achieve it through the perfect IEP or transition plan, although those are useful.

Independence happens when we give our children the chance to spread their wings. We have to let go. We seize opportunities when they pop up and create them when they are too few and far between. This needs to start from day one, not in middle or high school.

Often our children are more than ready – it’s us, the parents, that are holding them back.

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