Home modifications
Headrests and bed head…a tough problem to deal with!
I am having trouble writing as often as I would like. I underestimated just how crazy my life would get with three kids in three different schools this year. I want to be involved in each of their school experiences and that requires a lot of travel time and some serious schedule coordination. In addition to that, my term on the Advisory Commission on Childhood Vaccines (ACCV) ends this month but I have been appointed to an even more important and influential commission called the National Vaccine Advisory Commission (NVAC), so my days of free advice and counsel to the federal government have been extended for another three years. Anyway, today’s post isn’t about vaccines but I thought an explanation about the infrequency of my writing was necessary.
This is intended to be a more practical post. My most recent day-to-day battle seems minor and yet causes Quincy great distress. Quincy spends a great deal of time in a wheelchair or lying down and the result is chronic bedhead. But she has an incredibly sensitive scalp and hates to have her hair combed. To make matters worse, some of her seating systems are made of a rubber-type material which does nasty stuff to hair. So we have this constant battle to keep her hair smooth and tangle-free when she is constantly rubbing her head against material that mats it up.
I have used every hair product known to man and there is no magic solution. I think for boys this isn’t a big problem because they wear their hair short. I have recently been purchasing the softest, smoothest pillowcases that I can find and placing them over the headrests that are the biggest problem. It has helped a lot. The smoother the headrest surface the less hair tangling and matting. It’s a simple solution to a problem that has been plaguing us for years. It’s not the perfect answer, but I think I am on the right track. Silky soft pillowcases, salon shampoo and conditioner followed by high-qulaity detangler…it all helps. And this is really important. Quincy is fourteen and looking good and having fabulous hair isn’t trivial. I refuse to cut her beautiful curls so I am on the hook to find a solution to this constant, nagging problem.
Home modifications for the physically disabled
I am always amazed when I get to a point with Quincy when I find that I am at my physical limit with what I am trying to do. I am not big…I barely break 5′1″ and Quincy is close to being as tall as I am. She weighs close to 90 pounds. I can still lift her and do transfers, but have had to make changes as she has grown. About a year ago I realized that I could no longer pick her up off the floor if she were lying on a blanket. It was just too much physical strain on my knees and back and I was going to hurt myself. So, we constructed a changing table and a bed with gates so when she needs to lie down to rest or to be changed the lifts are from waist level.
About a year ago I realized I could no longer lift her up and into a car seat. We have a pickup and a large SUV and both sit quite high and the lift into these vehicles was again something that I was going to hurt myself doing. So, we finally broke down and bought Quincy a van with a ramp and wheelchair tie-downs. Now, when we transport her we just wheel her in, lock her down and go. A gain of independence for both of us.
What I see as my next problem with be bathing. At this time we transfer Quincy from a wheelchair into a bath seat which is sitting in the tub. This works well, but the lift from the chair to the bath seat or the bath seat to the chair with a slippery, wet teenager is starting to be hard. It’s probably getting close to time to look at re-modeling the bathroom so it has a roll-in shower. Then, we can simply put Quincy in a shower wheelchair, wheel her in, bathe her and wheel her out.
Up until this point we haven’t had to do any major modifications to our home to accommodate Quincy, other than adding ramps and safety equipment like bed gates and seating systems. But, the time is quickly approaching for us to consider the big stuff. It’s always a tough decision to make and I’m not sure I can explain it well, but every time I accept a new modification it feels like I am giving up hope for Quincy to gain new skills. I know that isn’t necessarily true and modifications are as much about my physical health as her safety, but it still feels like a bit of a defeat. Our challenge will be to make modifications that are practical, yet stylish so that our home still retains its beauty while being a safe place for us to raise Quincy.
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!!!
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National Vaccine Information Center (NVIC)
