Edmund L.

Dad

Preparing for a successful sleepover

There are numerous occasions when a sleepover can be considered for children with spinal muscular atrophy. This is especially so for our daughter, Angie, as she is a very social person who has lots of friends.

01/2017

To girls in elementary school, it is a big deal to have a sleepover and it’s the source of a lot of excitement and joy. However, for Angie and her friends, they know that inviting Angie over for a sleepover means that they are not only inviting Angie, but also her mom, her portable chair, her wheelchair ramps, and more.

Generally speaking, Angie has never had sleepovers at her friends’ houses. Instead, we have been hosting the sleepovers at our house. This is an easy solution, as we love having Angie’s friends over. But there are occasions when we have to go to someone else’s house overnight, such as family gatherings for Thanksgiving and Christmas.

In order to stay at someone else’s house, the first thing to understand is what their house looks like. If they live in a high-rise condominium, you’ve hit the jackpot. Because most condominiums have to follow ADA rules, the chances of them being fully accessible are very high. But in most cases, the house will be a single-family house. For these, I search for the address online and try to get a view of the house from the street.

I am primarily looking to see if the home is a single story or not. If it has multiple levels, our room will probably be on the second level. Then I’d have to bring her portable wheelchair, because her normal chair is too heavy to carry upstairs. The next thing I check is the front door. I’m looking for stairs at the front door. Depending on the number of steps, I decide what kind of wheelchair ramp(s) I have to pack. From the various sizes of portable ramps that I have purchased (2, 3, 4, 5, or 10 feet), I decide which one to bring. If the main entrance is not an option, we often try the entrance to the home from the garage.

With the help of a GPS app, I can get the big picture, but I also need to make sure of everything again with the homeowner. So I call and ask them to take a picture of their entrance to make sure their house is accessible. A surprisingly large number of houses are still not accessible despite the various ramps we have.

We typically breathe a big sigh of relief once we know that Angie can enter the main level. The next big question is the bathroom situation and her bathing schedule. If we stay for only one night, we typically skip the bathing so we have one less thing to worry about. But if we stay for multiple nights, I bring her shower chair. I ask the homeowner if the bathroom has a shower booth or a bathtub. For us, the shower booth is another jackpot. But if they have a bathtub, I have to find a shower chair that will fit in the tub.

Once the shower chair problem is solved, I need to see if they have a hand-held showerhead or a fixed, wall-mounted showerhead. Angie can’t use a fixed showerhead. If they have a fixed showerhead, I bring my own hand-held one along with a wrench. Changing out the showerhead is not too complicated. We get permission from the homeowner first, but most are more than happy to accommodate the temporary change.

One last important thing to use is a baby monitor. Even though Angie turns 18 this year, we still use a baby monitor in order to hear Angie call for help during the night. The baby monitor allows us to have a glass of wine with the family while she’s fast asleep.