06 Jan 2010
My head hurts
Want to know why?
- School sends an email wanting to know why I have stopped sending in Pearlsky’s iPod. How do I politely say “so you can spend your time with her trying to get her to communicate, or interact with her, and just not put on her headphones and ignore her”?
- Is a queer 26-year-old non-verbal, wheelchair bound, college graduate with cerebral palsy and a discreet video camera on her chair scary or cool? How about the fact that she writes emails to wheelchair companies that wrong her (although I would bet she inflates numbers a tad)? (I think I vote for cool).
- “I cut the back off her winter coats so she can wear them in the chair without causing a commotion putting it on … looks good, works well …” so, Claire, how about we go into business? This is a great idea, and it gives me others.
- Pearlsky needs new jeans. We need to buy boy’s jeans because the woman’s jeans ride too low and until they start making boyshort or hipster diapers (yes, I have looked) we need the higher waists. But do we try them on in the men’s or ladies’ changing room?
- The man or woman from the DME company that comes to help pick and fit a wheelchair for your kid (or you) is most likely a rehabilitation technology supplier (RTS). Impressive? I decided to try and figure out what exactly an RTS is. It appears the basic thing is to be a member of this non-profit (but not tax-exempt) organization, National Registry of Rehabilitation Technology Suppliers. Ok, then, what does it take to be a member of said organization? Not much of substance. You need to work for a DME at least a year, get some recommendations from people you have a working relationship with and do some continuing education. And the continuing education? Here are the next two sessions offered … got to love the second one …
- 01-19-2010, To Sit or Not to Sit
With clinicians being challenged to progress patient’s progress with functional activity, it is imperative a paradigm shift occurs in the development of treatment plans. This interactive workshop will discuss current best evidence regarding the rationale to sit someone while they have a pressure ulcer. … - 01-21-2010, Wheelchair Use in Everyday Life
The use of wheelchairs and seating systems by users throughout their day is largely unknown. A more comprehensive understanding of wheelchair use in everyday life can be useful within clinical, policy and design arenas. …
No wonder I know more about her chair than our RTS …
- 01-19-2010, To Sit or Not to Sit
Did I tell you my head hurts?
Not exactly pain, but this list is truly uncomfortable.
1. Pearlskey swallowed it and you had to pull it out of her mouth by the cord to the headphones.
2. Not.going.there.
4. None of the above. Take them home to try on.
5. Actually the first session is painfully idiotic and darn close to illegal. My impression of RTS is probably best left unsaid but perhaps you can get my message with these -> Wannabes. Ne’erwillbes.
I’ll answer about the jeans. Go only to places that have unisex changing places — Gap, Lucky, etc. Or order and try at home and then mail back. Lands End has good return policies…
I just want to thank you for the link to Deal with Disability. That is a FANTASTIC blog. I plan to read/watch the whole thing when I can!
This is enough to give anyone a headache but hey you’re doing it.
Alright, I am truly curious how you actually try things on in a changing room with Pearlsky. Does she stay in the wheelchair while you try on pants? Does this mean you need two people? I have never ever thought of trying clothes on my SDK (severely disabled kid) at the store. Man-thinking vs. woman-thinking, I guess. Very headachey stuff to ponder… be well!
1. My thoughts exactly! Usually, teachers have the opposite complaint when it comes to iPods. It’s school, for crying out loud – shouldn’t they be, you know, educating her?
2. I’m with you – that’s extremely cool.
3. That is indeed an awesome idea. Monkey isn’t in a wheelchair so it’s not one I need, but I’ll have to keep in in mind for some of our friends. If you go into business, can you design a coat that keeps a hemiplegic kid’s “bad” arm from getting stuck while his mom tries to wrestle into it on cold mornings? I’d pay top dollar for it.
4. Tough call. I’d see if the store has a “family” changing room, or else take her measurements at home so you don’t have to try anything on.
5. OK, I think I need a Tylenol the size of a hockey puck after reading that one! No wonder your head hurts.
I read your blog because I’m a special ed. teacher and I like to know more about what parents think. It helps me avoid doing the really stupid things your daughter’s teachers sometimes do (your post about IEP goals was very informative, for example). But I’m happy to say I have an answer for your jeans question! I’m a woman but I’ve worn men’s clothes since I was 11. You just bring those jeans right on over to the women’s changing room (even if it’s on a different floor, like at the Gap). If it’s really fully a men’s department, go into the men’s changing room. I do it all the time. No big deal.
Just replied to your post about makeup for Pearlsky and then the jeans thing caught my eye. If you’re looking to help her feel more feminine I would think the ladies’ changing rooms would be better. And boys jeans are often comfier in general though if you do ever want to try to find women’s jeans for her you might try retailers that are geared towards an older clientele as their styles will tend to have less-fashionable higher waists