Better together – disability parent Q&A

Q: What happens when things go wrong (delays, meltdowns, inaccessible service)?

A: I noticed the question was worded as “when,” not “if,” because in real life it’s inevitable that something will go wrong. I’m not sure if our roles as disability parents make us more flexible, knowing that we need to hold each day with open hands, or if our need for control, and so little ability to have any, makes us that much more anxious to clench our fists and hold on. Regardless, the only way to enjoy life is to let go of whatever remaining control you think you have.

We can’t make the flight land on time. We can’t avoid every meltdown. Inaccessibility is everywhere.

So what happens when we hit the wall? The same things that happen when we face upheavals at home. We take care of our kids, we make sure they’re safe, we meet their needs, and we help them to move on to whatever is next.

We’ve had flight delays that have left us in the airport for hours, or even overnight. The only thing we can do is feed our children, find the best space for taking care of medical routines, and try to maintain as much structure as possible to avoid collapse. When we’ve ended up on the airport floor overnight, we’ve found as quiet and as dark an area as possible. We did our best to get through bedtime routines and sing each kid their song before tucking them in under an airport bench. Yes, we end up missing travel activities and fun things we were looking forward to, but realistically we can all acknowledge that much worse has happened to us.

The foundational truth here holds regardless of the scenario. We meet our children’s needs and get them safely through. Meltdowns are exhausting and embarrassing, but our only job in that moment is to keep our children safe and to help them through… even if it’s on a train in Japan, where any level of noise is counter-cultural. You cannot control the situation: only your response.

Inaccessibility is the same. Safely get your child through. Often, this means turning around and missing something. Sometimes there is space for advocating, or asking for help, but many times it’s just another thing we need to hold with open hands and remember that your children may gain more from how you handle the situation than they would have from a perfect day. Keep it fun to be together and every setback is still an adventure.