Dutch Door

Ashley is a child that likes to explore. She is also very strong willed. If she doesn't want to do something, I am hard pressed to convince her otherwise. And staying in bed and in her room at night is just one example.

Left to her own devices, she would get up in the middle of the night, go help herself to something from the fridge, and then proceed to the family room to engage in some noisy pursuits. Since she is blind and deaf, I worry about her safety during those times.

When she was much younger, she had an enclosed bed. But once she learned to climb over the top and slide to the floor, I moved to using a baby gate at her bedroom door. That lasted maybe a year or two, and then she figured out how to unlock and escape. My latest attempt at keeping her safe in the middle of the night is a Dutch door.

Two years ago, I had a Dutch door installed in place of her regular bedroom door. When it is her bedtime, I keep the top part of the door open and close the bottom part. Doing it like that means I can still hear her if she needs me, but it also helps to keep her from wandering. I did have the lock placed on the outside of the door thinking she wouldn't figure that out and be able to unlock it herself. It took her all of 45 minutes to figure that out. So now, I have a slide lock placed at the bottom of the outside of the door. That solution has worked for two years now, but I never know when the little smarty pants will figure out how to open that.

But for now, I can sleep easily knowing she is safe in her room in the middle of the night!

I have heard that any door can be adapted to be a Dutch door, but because Ashley is such a strong little cookie, I opted for a solid wooden door. It wasn't cheap, but for two+ years of restful sleep, it was well worth the money!

Just another of those innovations we parents of children with special needs have to devise!!

Swash!

This week I am going to write about some of the things that have made my life as a mom to children with special needs a little easier. These will be the more obscure things - not wheelchairs, standers, hoyer lifts, etc - but things we might not think of right off the bat. And, if you have any products to share that have helped you and your children, please feel free to share!

In 2008 I wrote about one of my favorite things - my CleanButt Bidet toilet seat!

It was one of the features of my bathroom remodel, a remodel to make things easier for Ashley. And it worked so well that I have no idea how we existed prior to having it. But alas, four years later, the CleanButt was showing its age and I needed to replace it.

I searched far and wide on the Internet only to discover that the CleanButt company was no more...Even though I initially panicked, I did find that there are some other companies that make a similar product.

The product I chose was the Brondell Swash, and it is every bit as good as the CleanButt, and maybe even better. (Brondell has not asked me to review their product nor provided their product to me. I paid for it with my own hard earned money.)



The Brondell is sturdier, it looks nicer, and it was cheaper. There are more expensive models, but I opted for the one without the blow dryer. The one I got does have heated water, and cusomizable positions and water strength. The directions that came with it for installing it were simple to understand and very complete. Because we already had the electrical outlet behind the toilet, Chip was easily able to get it installed in about 30 minutes. (Brondell does make a model that doesn't require the electrical outlet, but the water isn't heated.)

I wholeheartedly recommend this product for anyone caring for a person with a disability - young or old. It has made life so much easier for me, and so much more respectful for my two kids with disabilities.

What's The Answer?

I was intially very excited when Ashley came home with a packet of information from our state agency, the Department for the Blind and Vision Impaired. It was an invitation for Ashley to attend a 4 week summer program called LIFE. LIFE stands for Learning Independence, Feeling Empowered.

The brochure said the program was to help students who are blind make the transition from high school to work or futher education. Experience would be provided in how to obtain and keep employment, how to navigate the world as a blind person, and provide opportunities for socialization and group interaction. Sounds great, eh?

Well it did until I started reading the list of qualifications. The one that concerned me the most stated that a student should..."be able to perform self-care activities with minimal supervision."

Ashley is deafblind, not just blind. She has medical issues, specifically seizures which can occur anytime day or night. Because of that, she must have someone very close by at all times. And, she must be monitored at night for seizures. The LIFE program would not provide that kind of support.

This is an issue that I have also faced with Ronnie. There do not seem to be programs that support people, especially young people, who have both a sensory disability and a physical disability/medical issues.

I have never been successful finding a camp for Ronnie. I can find Deaf camps and they aren't accessible for wheelchairs. I can find accessible camps and they can't provide a fulltime interpreter. So he has never gone to camp.

Now I am facing the same thing with Ashley. If she were just blind, she would be welcomed at project LIFE. But because she has significan medical issues which must be attended to, she cannot.

What's the answer...?

Take Me Away

I've always loved traveling. Whether it was for a camping trip at the beach or a plane trip to Florida or a cruise through the Caribbean, as a young adult I could plan vacations at the drop of a hat. All that changed though once I had children with special needs.

Since I first adopted Ashley and until now, the biggest trip we have ever taken was to Disney World in Florida. And that was all planned out by the Make A Wish Foundation. They arranged for all our needs, including anything related to accessibility. Now that I am on my own for arranging vacations, and now that I have two children in wheelchairs, I'm just overwhelmed and can't seem to make anything actually happen.

We have made some trips to a rented house in the Outer Banks of North Carolina, but even then we have to make sure we find an accessible house, and I have to have names and phone numbers for medical professionals and pharmacies in the area. I want to be able to plan something bigger - a trip to a far away destination - a place none of us have ever been to but have always wanted to see.

I found a website that may be able to help with the planning. It's called TravelinWheels, and it's tag line states, "Encouraging Disability Travel Around the Globe." There's lots of information on the site and even reviews about different locations. What I would like to know if whether or not any of you have ever used TravelinWheels or a similar service for planning a vacation? If not, what have you done on your own to ensure a fun and accessible vacation for yourself and/or your family?

Have you found locations that are more accepting and accessible than most? Do you have lists of places a person in a wheelchair should definitely avoid? And, if you have gone of vacations and needed the services of an interpreter or medical professionals, what have your experiences been finding those people?

Please share!