room adaptations
A disabled teenagers bedroom: a balance of function and fun
My husband and I try to raise Quincy with one simple premise…she is first a teenage girl, second disabled. We try to expose her to things that are age-appropriate whether it be music, tv, books, recreation, conversation, etc… Despite all the assessments and expert evaluations that use labels to explain her level of function, I believe she is “locked” inside herself and that she understands far more than she can express.
We have tried to make Quincy’s bedroom a reflection of this ideal. It has to have adaptions to make it safe for her and safe for her caregivers, but it doesn’t have to look like it. I have tried to create an environment that a teenage girl would related to…that is pretty and hip and comfortable.
Quincy’s bed is a good example of this…it is pretty and functional. We have gates on both sides so she cannot roll out, and all sides and ends of the bed are cushioned by large pillows. The side gate drops down so a transfer from a wheelchair to the bed is straight across which is optimal for a caregiver.
The french doors leading into her bedroom allow easy access for a wheelchair or her Tomato sitter chair. There is plenty of room to maneuver.
Finally, on the other side of the room we have a changing table. Again, this is the same height as the wheelchair seat so the transfer is directly across which is safe and easy for a caregiver. Underneath the table we have totes that store wipes, diapers, pads, etc…that way all hygiene materials are easy to access but not out in the open for the whole world to see. What teenager would want everyone to see her personal hygiene things?
I don’t know if I have struck the proper balance between creating a room that is safe and functional for a disabled child while creating a space that a teenager would enjoy. I’m sure if Quincy could talk she would have me change a few things. What I do know is that Quincy loves her room…the space calms her, she sleeps well, and she is rarely upset when she is in there. I’m hopeful this means she loves her room and doesn’t completely hate the color purple!!!
Sleep problems of the developmentally disabled
Sleep, or the lack of sleep, is a constant challenge for families raising children like Quincy. I wish I had an answer to how conquer the sleep deprivation problem, but I do not. Sleep is something that we have learned to not take for granted. A good night’s sleep is a gift, not a given, for us. But, my lack of sleep hasn’t been the biggest challenge…the biggest challenge is finding a way for Quincy to get good sleep. Sleep is complicated for Quincy. First, we had to find a place for her to sleep that is safe and secure and comforting. Our home is designed with our master bedroom and Quincy’s bedroom close together, so we can always have an ear on her. Quincy struggles with seizures so it’s absolutely necessary for us to be able to monitor her in the night. We also had to get a bed she could be comfortable in. Rob and I have always felt strongly that just because Quincy is disabled does not mean we have to live in a home that looks like a hospital. So, Quincy has a beautiful bedroom with walls painted lavendar and lovely furniture. What we needed in a bed was something with enough room to accomodate her constant movement when she is awake and that was at the right height for easy transfers from a wheelchair. What we found is a beautiful, full-sized bed from Costco…a girly bed for our girly-girl. We positioned the bed against the wall but realized that the small gap between the wall and the bed was a problem because she could lodge a foot or hand in that space. So, we filled that gap with a long body pillow. The foot board is also protected by a body pillow. We bought an adult sized bed gate for the side that is not against the wall. When the gate is up, it too is buffered by a body pillow. So, Quincy has a soft, pretty place to lie where she cannot harm herself if she moves around a lot. I use regular sheets, but over them I place a waterproof bed pad so if she leaks through her diaper in the night I only have to remove and wash the pad, not the entire bed. You’d be surprised how long it took me to figure this out. I was stripping and washing her sheets almost nightly before discovering these pads. I purchase the pads from my local pharmacy. Quincy does not like blankets…she gets tangled in them and it frustrates and scares her. But, we live in Alaska and have cold nights all year round. We found these fabulous fleece pajamas from Land’s End that she wears. They keep her toasty warm without the hassle of the blankets. Finally, Quincy’s ability to sleep well is very connected to light and dark, so we use blackout blinds in her bedroom. When the room is completely dark, she sleeps. When it’s light, she wakes. It’s simple, but still took a long while to figure out. So, that’s how Quincy gets nice, long, peaceful sleeps. And, her room is so great for sleeping that more than once I have found my husband curled up in her bed taking a nap! We have to grab sleep when we can and she’s very kind to share her great space with us.
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