From the eMailbag …
Hi, wondering if you can share dimensions of the rooms your daughter uses. How big is the bedroom? Bathroom? Would she spend most of her time in the living or another room? How big is that? Or, how large a room have you found is needed to accomodate her well?
Does she use a stander? Tray with the stander? Is it adolescent/adult sized? Where do you store that?
In some pictures on your blog you show her bed and changetable, and the room does not look that big. We have been advised to have a large area for our daughter, and are struggling to find enough space in our “normal” and utterly unsuitable house, especially for the bathroom. Thank you.
I will be repeating some of this post here. I just got this email, the sender is ok with me answering in a post, and it actually ties in to questions I was just about to post about and ask you, my friends and readers, to help me with.
These are pictures from the other post … but new information!
First, her bedroom:
The room is a typical 9 x 12 foot (3 x 4 meter) bedroom, the 9 foot dimension is left to right in this photo. Her bed, on the left(!) has the “door” open, it folds up. Both the bed and the changing table are built on top of six drawer dressers. The space in the middle is 3 feet wide (1 meter). The lift travels along the ceiling from side to side. With her wheelchair in the middle, she can go from the bed to the changing table to her wheelchair (or the shower chair) without manually lifting her at all. There is no reason for a larger room, the only time she is in here is for sleeping and changing.
Pearlsky spends her time at home primarily in two places. One is next to me, in front of the television. The television is in a wall unit and my computer is in the section next to it. So I sit next to her, she is in front of the tv, and either we are watching together, or I am on the computer and she is next to me. It works out well. This is in the living room.
Also in the living room is an adult changing table I found on ebay.
The edge of the table is 3 feet (1 meter) out from the wall (it can fold up against the wall if needed), and it is six feet long. Pearlsky’s wheelchair can go next to the table and the lift will get her from table and back to chair. This is used as much more than a changing table. She actually spends a good amount of time lying on table, listening to music, playing, etc.
So, essentially, Pearlsky needs much less space than a normal kid would (yeah, I said “normal”). Those are the only places she hangs out. Sure, we wheel her in the kitchen when cooking (her nanny is also a part-time chef!) and stuff like that, but predominantly, she is near the computer / tv, or on her table, or outside for a “walk.”
“Walk.” Damn, I hate that, but what else can I call it? She is outside for a “push”?
She uses a stander at school, we do not have one at home.
The bathroom. Pearlsky’s was custom built, I had the luxury of expanding it to accommodate her needs.
That is a roll-in open shower (with eight shower heads). You don’t see the urinal, bidet, jacuzzi, heated towel racks, (really), but I digress. I can wheel the shower chair (Rifton makes some really great stuff) into her room, use the lift there to get her on it, wheel her into this shower area, etc. The shower area alone is just about the width (left to right in this picture) of a typical bathtub in a typical 5 x 8 bathroom!
So, in response to the email question, I don’t believe Pearlsky needs a lot of room for typical living, certainly less than a typical person. (ouch). The bathroom is an entirely different story. I am lucky that I was able to do the renovations needed, and get a really cool bathroom to boot.
Speaking of bathrooms … Now the big questions, and I am looking for input here as well.
Do any of you attempt to have your severely disabled, wheelchair bound charge use the toilet? Rifton has this and Tumble Forms has this. I guess you need to take the child from wheelchair to changing table (to pull down their pants) to this chair and wheel it over the toilet. Do any of you do this? Or something similar? Please, let me know if you do. (No, I am not going to toilet Pearlsky.)
Also, how to you bathe your kid with an unmodified bathroom? Do you put a bath chair in the bathtub and then physically pick up your child and put her / him on the bath chair? Obviously if your child is not too old (well, not too big, which is not a problem I guess for those who do evil things …) or not too heavy this is not a problem, but what do you do when your kid is too big to lift and get into and out of a bath seat? I don’t believe a Hoyer lift would work, maybe a ceiling lift as in Pearlsky’s bedroom. How do you bathe your child who is too big to pick up? How do you wash their hair?
More shortly, including my feelings on Pearlsky turning 20 and my intense studies of the Mayan Calendar and the imminent end of the world, since the LHC is a bust. And maybe a discussion of why AFO’s and body jackets have been relegated to the dumpster. And, if you guess my next part-time profession that I am actively pursuing, you get 3 free hours!
I lift my daughter both on and off the toilet and in and out of the bathtub. Yes, it is labor intensive; she’s 90 pounds and I’m 105 pounds and aging fast and won’t be able to do it forever. I was advised many years ago by the best PT we ever had never to use a prone stander, and we don’t, so all weight-bearing on her feet either happens in tiny increments during transfers, with most of her weight draped over my right arm, or while using the biggest size therapy ball. I have a homemade wooden bench between the toilet and the tub to help with those transitions. Maybe the Japanese robotic exoskeleton suits will be perfected soon. A friend of mine has a bathtub for her kid that lifts—a rolling, reclining, high bathchair moves her from changing table to tub. Our only working bathroom is tiny, so tiny I have to pull rather than push the wheelchair in, and clearly I have to build something custom, but very little I’ve ever seen appeals to me aside from a huge roll-in shower. The designer who solves these problems cleverly and with esthetics in mind will do well indeed. I don’t think we can count on the Mayan calender or the collider. Back to the asteroid.
At school we use the Rifton blue wave ( I have used it for kids from preschool to middle school). Usually I have had the student bear some weight and then do a pivot turn onto the toilet. For kids who can do more weight bearing, I have them hold the bar on the wall and we work on pushing down and pulling up pants as appropriate.
Speaking AS the disabled person (a 17 year old disabled person, to boot), my parents are able to lift me (last time I was weighed, I weigh 26 pounds) and put me on my bath chair from my bed. I have brittle bone disease. We considered a toilet seat for a bit but decided it was too much lifting, so I use diapers.