Thank you, our story and request for ideas

Thank you for adding me to your group.

My son is 12 years old and has cerebellar ataxia, which is part of his very rare form of Leukodystrophy. He walks independently still, although there are times that he requires a lot of help to ambulate in the home around corners, up/down stairs, etc. His condition will decline and we can expect that to happen over the next 10 years.

Our family is in the very beginning of building a home that will be handicapped accessible to him. Ground will be breaking on the home in the next few weeks and I have to start making some decisions/getting ideas. The house will be one floor, no steps at all, widened doorways (we are expecting him to be in a wheelchair eventually), the bathrooms have been designed to accommodate a wheelchair.

There are a couple of things that I haven't decided what will be best. The main issue is the flooring. The bedrooms will have carpet, so no questions on that. We had originally planned on doing hardwood in the main living areas but I'm having second thoughts on this. Since he is still walking I don't want to discourage him by making the floor slippery. He doesn't walk in socks without shoes because of fall risks but I'm afraid of doing the hardwood?

Also trying to get ideas of best materials for the bathrooms. His bathroom will be connected to his bedroom by a pocket door. I'm trying to figure the best flooring for both bathrooms and also what kind of bathtub to do for his bathroom. I've looked a little into the walk-in bathtubs and am starting to lean toward this for him. Our shower will be roll in.

Any ideas, experiences and thoughts would be most helpful and greatly appreciated!!

Why dont you make a ‘‘wet floor’’ shower room?? That’s what i have for my daughter and we have marine altro on the floor it is non slip and slightly dimpled
In my daughter’s shower room i bought her a shower head that lights up with the water pressure she calls it her disco shower!!

Dear Tallcrowe, A HUGE welcome to this site! You sound like a WONDERFUL, LOVING parent, kudos! I have hardwood floors in my main living area, as I walk barefooted in my home. Personally, I have no problem with this. LIke your son, I wear shoes (flat) with socks as socks alone are slippery. In the bathrooms I have hardwood (main floor), linoleum (master) and carpet (jack and jill-bathroom between two bedrooms). I take showers not baths as a preference, although if I took a bath, a walk-in tub would be the most logical for me. I have grab bars here and there for help, although I'm sure you've thought of those. Sounds like you're doing everything you can to make your new home comfortable and safe for your son! My best to you all..., ;o)

As his problems progress will a walkin tub give a caregiver room enough to aid in his bathing if he is going to getting worse. I know I redid my bath too soon and now I see where I could have done better if I had known that I could have done a lot to improve important needs for my small bathroom as I get worse.

Thank you for the suggestions. I'm looking into the Altro flooring...never thought of that as a possibility and I love the idea of the light up shower son would LOVE that! I'm also thinking that for the bathrooms a textured vinyl would be a good option. I have a feeling we'll end up sticking with the hardwood in the main living spaces since he rarely has shoes on at home and pretty much never has socks only.

gelu65...thank you for the note on the walkin tub. yes, I'm not sure that we would have enough reach to help him because of the size of these tubs. I will look into that. Do you have any other suggestions on the things you would change about your small bathroom? His will not be very large, but will be large enough for wheelchair access.

Thank you everyone!

I think you might see about a lift if he is eventually going to need one and the bathroom and shower sometimes could be all tile with a drain in the open bath area. At least you can prep an area with 2 by 4 backing in different areas for hand holds or lift. I think ataxia attacks everyone at a different rate so you may never need some things done but at least you have prepared best you can.

I have a very rapid form of CA but it has still gone in stages.I will tell you what I have found useful so you can pick out the bits that might be relevant now or in the future. Firstly we needed grab rails everywhere for heaving and balance so we installed those everwhere esp at points of aaccess like toilets and doors.We also have moved where theere are no steps.

We have installed a ramp for access to and from the car.

The bathroom is now a wet room as I cannot shower alone anymore. However privacy and dignity are important to everyone but esp teenage boys.Also in there is a seat for the shower with handles,a bio-bidet for washing bottoms and non slip tiles.The bidet thing preserves your dignity for a bit longer.Bear in mind dooorways may have to be widened for wheelchair access.Carpets and Rugs are a bit precarious coz of slipping;we have wooden floors which seems to be the fashion although not in the bedroom.We are continually making adaptions but it's a good idea to have an overall plan as it can be quite expensive. We are using my inheritance to xfund the alterations. The council will do some but we didn't want to wait.Hope this helps with your plans.