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.
Sorry to ask but wouldn’t they have to lift you to change you? Is that less lifting than helping you onto the toilet seat? Surely the latter would be more pleasant for you than using a diaper.
Actually, no. They only need to lift my bottom and legs for diaper changes, 🙂
But wouldn’t it just be more pleasant to not use a diaper, if you aren’t incontinent? Is the lifting a fracture risk for you, or is there another reason? Sorry, I’m not judging, it just seems unusual for someone your age to do that rather than be lifted onto a toilet seat.
Carrying is a fracture risk, yes. We try to minimize carrying, 🙂
You really weigh only 26 pounds? I knew a 5th grade girl with brittle bones (Osteogenesis Imperfecta or OI) and she was small, but not that small. Do you mean 26 kilograms?
I don’t, 🙂 I only weigh 26 pounds, honest!
Get a female urinal bottle (they do come in smaller sizes) and learn to use it. As lifting is a major fracture risk for you, speak to an OT about getting a few lifting slings custom made – for lifts either by hand or with a hoist/lift, it’ll spread the pressure better and protect your joints a bit.
Our home is a 90 year old cape cod style home. It’s a two story with a steep staircase. There are two rooms upstairs, one once was Hannah’s room. We had to move her to the first floor. She now has an 8X10 room that has a hospital bed for reclining purposes (she has a feeding tube that runs through the night). Now we have a manual hoyer lift that I did use several times while pregnant. I carry her up the steep staircase for baths. She has an Otter bath seat that we place in the tub and it lays back. Our bath room downstairs has a tiny shower that is no way possible to use for H. It’s not too bad yet. She weighs about 65 pounds.
We do have a stander. It is a bts stander and we used it at least three times a day over the summer. Now, she in school and uses the same kind there. She doesn’t do too well in it, and most days only spends an hour or two in it at about 50 to 60 degrees upright. She just gets too uncomfortable. We did just get a back brace for her because we were told this may help to slow the progression of her scoliosis. I already dislike it, but we are going to try it.
Your home looks really styled out for your girlie. We do not want to do too much to this house. We hope in the near future to be out of here and in a perfect, medium sized ranch home. Thanks for sharing the pics!
That’s an impressive set up you have there. For obvious reasons I don’t have an answer to any of your questions. This just makes the future so much more overwhelming. Glad to hear from you again!
Looks like a fab setup, the bath looks great. We have a small bath seat/netty hammock thing at the moment, our little guy is only 3 and weighs 28lb we need to move to a more appropriate house before he ges too big to carry up stairs. As for the toilet seat I know they use them t the school he will be going to but I worry about using one at home as he gets bigger but I guess time will tell with that one.
On a different subject I was reading some of your previous post and you mentioned Pearlsky seemed to be suffering severe menstral cramps, I have used magnesium supplements to help with this and they seem to work (not sure if it’s just the placebo thing though) I’ve read that a lot of women are deficient in magnesium and this causes cramps. Just thought I would let you know, may be worth a try if it’s safe with any meds Pearlsky is taking. X
I keep going back to the pics of your changing tables. That would really be beneficial. We currently use her hospital bed. I’m going to look into that. Space is definitely an issue. We have equipment taking up space everywhere. The stander sits in our livening room. The big, bulky hoyer (that I don’t use) sits in the corner of her tiny room. The ramp leading into our house is a black, metal thing that resembles those you would use on your way up to an amusement park ride. Yep, the rides in our home are all that fun all the time. She hates the stander
Sarah is 16 and 75 pounds. I rent my home so I cannot make any modifications to it. It is a ranch. I am a single parent. I do all the lifting, obviously. I carry her from the car to the house. She spends time in a rocking chair in front of the TV, her stander(she likes her stander), in a chair at the table and in her bed. I change her on her bed. I lift her from place to place. I do not use her wheelchair in the house, it stays in the trunk of my car to use when we go out. I carry her from her bed to a bath seat that is in the bathtub. And I carry her back. She does not use the toilet.
My cousins have a small house with a lot of kids in it, and two profoundly disabled kids, one of whom is already an adult. They had a tiny bathroom (not even a shower in it) on the first floor, and with the help of a CP organization (don’t remember which), they cannibalized the adjacent space which was a small rec-room/hallway and made a great bathroom with a wheel-in shower and a massage/changing table. (No toileting arrangements, to my knowledge. When the girls could use the toilet, they were small enough to lift.) Because they have the space in there, they keep most of the girls/ medical equipment in there as well.
In the small living room, they have a full hospital bed with oxygen, etc. behind a curtain so that it can be private space or part of the bigger room, as well as a couch that’s at a good level for wheel-chair transfer. No lifts anywhere.
Beautiful set-up. I am thinking you would be a SPECTACULAR consultant for parents of special needs children. Not just with equipment, but with schools and services as well.
Let me guess, you’re next business venture is in wheel chair design consultation. Just guessing.
Just wanted to mention here the blog of a woman I follow, trying to cope with some of these large issues. http://thesoundofthesilent.blogspot.com
All you guys who have a home you can’t modify for whatever reason, take a good look at these: http://www.liko.com/na/north-america/Products/Overhead-Lifts/Free-Standing-Solutions/ – they’re usually called gantry hoists or gantry lifts.
No strength needed, no extra storage space (you typically have the legs of the gantry against the walls or in the corners of the room), no re-organising. A trained person can put them up or take them down in less than 15 minutes.
And no, I’m not on commission.
I do use the toilet – there are some lift slings available which are designed to let you remove undies en route so you don’t have to lift to a changing table or bed first, but I’m not able to use that sort of sling due to joint fragility so I do do the wheelchair-bed-toilet route. If I succeed in getting a wheelchair which can lie flat, I’ll be able to ‘debrief’ in my chair instead, I hope. I currently use what must be a very close cousin of this: http://www.angelsolutions.com/products/commodes/t80-tilt-in-space-chair/ with lateral thoracic supports added.
A typical Hoyer type lift won’t lift in and out of a bath unless the bath is on a plinth to allow the legs of the lift to go under it. This is perfectly doable if you’re designing/remodelling a bathroom.
I’ve got to say, as an adult and adult-sized person, I absolutely hate hoyer-style lifts with a fiery passion. They’re slow, awkward to use, need oodles of room, tire your caregivers out and you can forget about using them in a carpeted room or across even the most microscopic of bumpy room threshholds. I’ve got a track hoist installed that goes all the way from my bedroom, right across the hallway and into the bathroom, where it covers both the toilet itself (although I can’t sit on the toilet directly, a lot of people can with the right supportive sling) and my shower/changing bench.
I’d be happy to upload a few pictures if anybody wanted.
Hi Becca, I do home health nursing care for pediatric patients and I’m always interested to hear the perspective of someone who has to actually use all of the equipment. Many of my clients are either too young or otherwise unable to communicate. I hope to learn from someone like you on what is comfortable to use.
Cathy, I’m more than happy to share pretty much all of what I experience – I sometimes have great difficulty communicating myself and this is expected to worsen with time, so I’m putting a lot of my available energy into setting things up so that my preferences and experiences, not just my immediately-apparent needs, will be taken into account if others are making decisions for me in the future.
A game changer for me that really surprised my OT was switching from a hoist sling with an integral head support, to one which I use with a separate neck roll which is threaded onto the straps of the sling. It’s vastly more adjustable so works better for different positions and is much much more comfortable!
Having a sling that’s specifically designed to leave-in once I’m in my wheelchair or adaptive armchair was also a biggie – you don’t want to be struggling to remove or replace them if you’ve got very limited mobility and/or experience chronic pain.
Hi Becca
May i ask what kind of sling you use and who manufacturs it ? Sounds much more comfortable than the typical hoyer sling i use . Thanks
you could call a walk a constitutional. I love that word. so fancy.
Great article. Do wooden bath seats like these create a lot of mold?: http://www.shoppingblox.com/showerchairsandbathseats