Wednesday, September 30, 2009


Chair or mecha-droid? Today was a big day. Two people from a medical equipment company came down from Syracuse to deliver some pieces of adaptive equipment we've been waiting many, many months for: a specialized car seat, a gait trainer (walker), and a positioning push chair. They also brought two items for Oliver to try out before we place orders for them. So we still have to wait for a high-low positional chair, and a standing frame... Of course we need these two pieces now, and I am worried it will be many more months before we get them.

Ollie did amazingly well amidst a lot of commotion: two parents, two therapists, a nurse, and two men he'd never seen before, all trying to force him into contortions with strange new pieces of equipment. Luckily he was in a pretty good mood to start with, and we put on a Sesame Street video ("1 2 3, Count with Me", his current favorite) to distract him from the stress, which did the trick.

So far we have been using old loaner equipment, none of which is fitted correctly to him, and some of the items look like they are 20 or so years old. We're grateful to finally have some of our own stuff, and will wait anxiously for the chair and stander to come. But I'd just like to say that I hate the equipment. I hate that Ollie needs them, I hate how big they are, I hate how difficult they are to work with, I hate how ugly they are, I hate how expensive they are, I hate how many hoops we have to jump through to get them and how long it takes to get them, and I hate that I have to feel so grateful to have them. But they will help Oliver to be positioned correctly, help him to bear weight on his legs, and help us get around with him, and so I am grateful for them.

Convaid push chair Trying a new stander

One other thing: I just don't understand why adaptive equipment has to look so horribly ugly and scary. Some of these things look like killer robot drones from Star Wars, ready to unfold and zap you. Ollie is a little boy, and he shouldn't have to use such awful looking stuff. A lot of people and one little boy I bet if Apple, for example, made this sort of equipment, they could make it look nice, fun, and maybe even inviting. Yes, there are constraints with all the ways these pieces need to fit together, but I am sure it could be done. In the meantime, we are stuck with a houseful of big, cumbersome, scary looking things that cost a fortune. The positioning stroller and the gait trainer cost almost 4,000 dollars each! Thank goodness our costs are covered by insurance and Early Intervention, at least for now.


Maini Baba said...

Yes,dear Megh, I can see why you hate those big, cumbersome ,ugly equipments ! I agree with you hundred percent.They do look scary But you know Ollie would need them and all we want is that he should get whatever is necessary for his slightest convenience and comfort.He is very precious to us all. He is lucky to be in US, where he can have access to all these. Why dont we think about the numerous other unfortunate children around the world who are like Ollie and cant dream of such equipments!!

Debbie Feldman said...

I hope Ollie does great with his new equipment. Remember that it's OK to feel frustrated with it all sometimes; the situation isn't perfect, so don't expect yourself to be, either!

Susan, Mum to Molly said...

Ahhh, Meghan - I know that love-hate relationship with equipment very well...

I love what it allows her to do, but I hate that we need it.

I agree with you about how it looks too. Do you get any say in which types you get?? If so, perhaps have a look at Jenx - they make the monkey stander Molly has.

Failing that you can always decorate with fun stickers, fabric etc.

Shouri said...

My God! The chair indeed looks like it is out of star wars or something! They could have at the very least, used brighter colors... It is, after all, for children.

I too hope Ollie does well with his new stuff. He is slowly becoming a big boy - and will soon become too heavy to carry around...

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