As my daughter, Casey, got older, her arms and legs became stiffer. She had a very complex case of cerebral palsy and over time she had a lot of contractures and dislocations. Dressing Casey became a huge struggle for us.
She laid down most of the day, so we could not have anything with zippers, buttons, bows, or any type of embellishment, as those often led to bed sores and skin issues. We stuck with soft t-shirts of all sleeve lengths and leggings or soft shorts.
Her range of motion was very limited. Her shoulders were rolled, putting her arms in front of her. We could not lift her arms over her head or spread her arms open or behind her—as you need to do to put on coats. Most of the shirts we would buy were a few sizes too big and we would put her arms in first and then stretch the shirt over her head/body.
Luckily, in Texas, coats were not needed most of the time. However, there are those few weeks a year that it gets really cold. Keeping Casey warm required us to get a little creative.
First, we used blankets. We could put one under her in the wheelchair, get her locked in, and wrap the ends of the blanket around her. This worked somewhat, but it was hard to get the blanket out from under her after we got inside—then she would get too hot. Blankets also caused problems as we rolled: they would get caught in the wheels or get dirty on the ground. Blankets worked in a pinch, but they were not ideal.
Some families suggested we put Casey in her wheelchair first and then put her coat on backwards, leaving it unzipped but covering her upper body and arms. This worked really well, unless it was windy, when Casey’s back and sides would often get a little too cold. We tried this when we knew we would have very short times outside. It was much easier to take the coat off after going inside and did help a lot with the overheating issues.
One day, I was at the local pharmacy picking up some medications. I happened to see in the ‘Seen on TV’ section that there were children’s Snuggies. A pink one covered in princesses caught my attention. I was just like you—I laughed at the Snuggie commercials on TV. But here I was, putting a Snuggie in my cart and heading to checkout.
It worked! It worked really well, actually.
The Snuggie was like a blanket and backward jacket in one. There was plenty of extra fabric to keep Casey’s sides warm and block the wind to her back, and there were arms to help us get it on properly and keep her arms in the straps for her wheelchair. Snuggies are amazing for people who use wheelchairs.
We added a few more things to the Snuggie over the years.
We found that warm fuzzy socks were great to use over her hands instead of gloves. It was hard to get her hand and fingers open just right, but with a sock we didn’t need to open them at all. We ordered fingerless gloves to try, too. They were good, but the socks were easier, cheaper, and seemed to keep her hands much warmer. We used the same on her feet. She could not wear shoes, but we would get thick, soft socks and warm slippers that we could stretch to get over her feet.
There is not perfect item out there that will work for everyone, but with a little creativity there are lots of things families have come up with to keep our kiddos warm.
Another suggestion is ponchos. You can find them in all fabrics, prints, colors, with or without hoods, and much more. Hopefully, some of these ideas can help you to keep your little warm this winter.
You can find ways to connect with other parents to share other ideas like this on this website.
Emotional trauma. It's awful. It's painful. It's sad. It's a nightmare. I can handle physical disability. I understand that. But emotional disability? That's a whole other ballgame.
Categories: Family Support