Walk With Me
By Carol Englehaupt
One of the best things Easter Seals gave us, as a family, was access to knowledge. Suddenly, Josh was seeing a speech therapist, a physical therapist, and an occupational therapist as well as attending class with other children so you can add socialization skills to all the therapy.
The best thing about having access to therapists was the input in what Josh’s needs were. We were so lucky during Josh’s early years. We escaped a lot of the problems that cerebral palsy can cause. Josh’s diagnosis was mixed cerebral palsy; predominantly athetoid which meant his muscles had low tone. The downside of athetoid is lack of strength. His grip was poor, his weight bearing skills lacking. He wasn’t able to control where and how the muscles worked.
The upside of athetoid was the muscles didn’t contract and pull on his bones and joints. With me doing range of motion exercises daily with him he never developed problems that would have resulted in him having to wear braces or splints.
The physical therapist got us connected with a wheelchair vendor. The distributor came right to Easter Seals making it easy for Josh to be fitted. We had no choice in what type of chair he received. His first chair had back wheels that lifted allowing him to be put into the car without having to get out of his chair.
It isn’t always easy getting equipment for a disabled child. Each child has different needs and different degrees of disability. For some of the equipment, such as wheelchairs, we needed a doctor’s prescription if we wanted to have any hope of getting help through insurance reimbursement. We have been fairly lucky with wheelchairs but there are other needs that insurance doesn’t help with.
First of all, if there are any budding inventors reading this blog please put some time into developing better equipment for the disabled. And make the product fairly priced.
1.Finding appropriate equipment is difficult, sometimes impossible and nothing that we purchased for Josh was ever 100% satisfactory. Sometimes it was the product at fault but often it was the company that sold it.
2.The equipment found was often outrageously priced. For example. Josh is non-verbal. He communicates mainly by eye-gaze. To make it easier for his teacher to read his responses we purchased an eye gaze board. This consisted of a small sheet of plexiglass with a hole cut out of the center. Words and pictures could be placed around the outside of the hole and with the teacher holding the board up she could accurately see where Josh looked. This little piece of equipment cost, back in the mid-1980’s, ninety dollars. Insurance doesn’t cover this type of equipment. That’s a big chunk of money for material that was probably less than ten dollars.
3.I bought so many items hoping they would help Josh. Things like Velcro pencil holders, rubber coated spoons, light pointers, communication devices that sometimes ran in the thousands of dollars. None of that equipment was covered by insurance. Most of them didn’t do what I needed them to do. We donated a lot of equipment back to Easter Seals or to other children that could use them.
4.My biggest gripe with most of the equipment purchases was first, finding them. Without access to Easter Seals and the therapists I don’t know that I would have been able to locate a reliable vendor. Then I had the problem of being able to order from those vendors. Most of them would not sell to an individual. I still don’t know why I can’t make a decision on what Josh needs, find the item in a catalog, and order it without having to go through an organization like Easter Seals or United Cerebral Palsy. I hope it’s changed since Josh was small. It needed to.
I wish there was some sort of trial period when you could let the child use the product to see if it will do what it needs to do before paying the money. We have spent literally thousands of dollars trying different equipment. It’s sad to say that the most useful items we have were created and made by people who know him and not by anything provided by a company.
My husband created a fishing pole holder for Josh. Josh spent many a happy hour with a fishing pole in the water and watching his bobber. Bringing in the fish can be hairy with me helping Josh hold onto the handle with one hand and reeling with the other. If at all possible, I try to give Josh the actual action and feel. His hands, to the best we can manage, do the work. You should have seen his face the day he pulled up a 30 pound grass carp. We released it back to the water, but it did its job and gave Josh a fishing thrill.
A friend of Josh’s who introduced him to Leketek had a dice roller made for him. This device was made out of a washed out butter container and wooden frame with a handle that allows Josh to roll dice. He doesn’t need any help for this one. I should post a picture of this device. It’s a wonderful thing and it has given Josh hours of gaming fun. Yahtzee is maybe his favorite game.
I could go on and on about equipment. It is frustrating to picture something in my head and not be able to locate anything like it. To find an item but have it priced so high it feels like highway robbery. Or to buy what seems like the perfect item only to have it fail.
I could write a blog just on wheelchairs. Over the years, the type and variety of chairs has increased. He has more options. I will say this, though. No chair, and we’ve gone through maybe eight chairs by now, has been exactly what he needs. No amount of molding, or adjusting, or materials has made a chair that he’s totally happy in.
As a parent, my biggest gripe, aside from cost, is length of time from order to delivery. Josh is an adult now and his growth is pretty much done. But when he was younger, I would wait to order a chair until it became absolutely necessary. The length of time from order to delivery can be up to six months. I found this appalling then, and I find it so now. For a child, six months can make a huge difference in growth. By the time a chair gets delivered the fit can be wrong.
And when a child is sitting in a chair that doesn’t fit it can be torture for that child. I want better service from the wheelchair vendors. I want to know why it takes so long from order to delivery. What I would really like is to tour the company that actually makes the chair so I can see at what point the process fails. And they can’t tell me it’s time wasted while they wait on insurance payment. When I discovered how long it takes to get a chair I paid up front and still had the time delay.
I knew I’d fall into a rant eventually. This blog has become longer than I intended so I’ll quit for now. I sincerely hope everybody everywhere can sit in comfort, heal all pressure sores, and find whatever piece of equipment that will make their life easier.