Offended by OT's comments - Down Syndrome Message Board

MrsBlack · 06-07-2006, 10:45 PM

My 15 month old daughter Cameron has been getting 2-PT and 2-OT visits per week. I love our PT gal...she's fantastic and very knowledgeable. And up until today I've been fine with the OT, although, there are a couple things that have bothered me in the past. One thing is that she throws in the towel too quicky and seems to be barely trying. If Cammy is even the slightest bit disagreeable, she just hands her off to me. She's basically just sitting there with her most the time, and really doesn't seem to be trying.

Today, she came over with another student in training without even asking me, and yes, I would have agreed to it, but it's also nice to be asked. She was fiddling with a toy and said "I can't get this, I feel retarded today." and I know it slipped, and so I just continued what I was doing even though I thought it was a really dumb thing to let slip out. But then a few minutes later when responding to the question if my daughter would ever drink liquids (as she's on a g-tube at the time.) and she said "Well, it depends on the level of brain damage she has." and I was like Huh?!! I asked her what she meant by brain damage, as I've never heard of DS being the same thing as brain damage. I had always read that it was a chromosomal difference that caused differences in their development, and I've always associated "brain damage" with being a brain that had somehow been traumatized. Anyway, I guess that kinda chapped my behind. I suppose if one were to research it deeply, a scientist or two might refer to it as brain damage, but I really just don't think that's an accurate way to describe Down Syndrome at all. It REALLY doesn't make a huge difference to me if I were to be proven wrong, but I guess with everything else that has been bothering me about visits lately, I feel like WHAT'S THE POINT OF THESE VISITS?

This was more of a vent than anything. Ahhhh I can breathe easier now. If you made it to the end of this, thanks for reading. Would her comments bother you too? What should I do about her lack of enthusiasm? I hate to switch OT's, but it's a possibility. I feel wierd doing it though because she's been with Cammy for a year. Maybe I should get more active when she's here and be more hands on during her therapy. Maybe that would get her kickstarted. ????

Jaber · 06-08-2006, 08:35 AM

Wow, both comments would send me right over the edge. First of all, I have a real problem with the word "retarded". I find it extremely derogative and I'm upfront w/ people I know well who happen to let it "slip out". For your OT to use that word in front of you, as well as the brain damage part, tells me that your OT is young, and has a lot to learn about disabilities. She should not be working with the disabled w/ that kind of lack of knowledge about them and ignorance towards them. People w/ chromosomal disabilites aren't having delays or social problems (or any other problem) due to brain damage, unless they have it in addition to.
I'd call your service coordinator and asked to be switched to another OT if they could recommend one that's more experienced and tolerant. This person you have now should go take some classes, seriously, because to work with our children w/ DS take a lot of patience, expertise in their field, AND knowledge about the child's diagnosis.

MrsBlack · 06-08-2006, 11:29 AM

Thanks for the reply. Well, I've done some thinking about it and I think I'll keep her on. I just bought a book on fine motor development, so educating myself about OT should help in being able to have a more helpful exchange when she makes her visit.

Hopefully she won't be making any other thoughtless comments because I will call my coordinator and get a new person if that should happen.

snice · 06-10-2006, 09:53 AM

Scientifically, Down Syndrome does cause damage to the brain. Not in the way most people think of (like severe trauma to the head). But, that extra 21st chromosome alters the way all cells in the body work and interact together. When the embryo is still developing, the effect of that extra chromosome is to alter how the brain is formed. It is considered "brain damage" (or, perhaps more appropriately "brain dysfunction") because, essentially, something changed the brain and the brain doesn't work as well as it would have if that something hadn't changed it.

With that said, it seems like your OT needs to not be so intimdated by the "brain damage" and learn that it is OK to push children with Down Syndrome just as hard as you would push anybody else.

MrsBlack · 06-10-2006, 08:20 PM

Well, I feel better since getting this reply from the Mile High Down Syndrome Society:

Hi Kim,
I'm sorry that Cammy's OT has referred to her as "brain damaged." Cammy may have Down syndrome, but she's not brain damaged.

Down syndrome is a genetic condition caused by an error in cell division that results in the baby having three #21 chromosomes instead of two. The extra chromosome is duplicated as the cells divide. It is the fact that since the baby has 50% more of whatever chromosome #21 does, which causes the developmental delays and other conditions associated with Down syndrome.

Brain damage is cell degeneration. Brain damage is caused by various things: head trauma, inadequate oxygen, brain infection or hemorrhage.

So, if Cammy did not have any of the above, then she does not have brain damage. She has a developmental disability/genetic condition called Down syndrome.

For example, a child has CP (cerebral palsy) because there was damage to the area of the brain that controls muscle tone (could be lack of oxygen during birth, etc.).

Hope this helps! If you need written information for your "debate" please let me know!
Linda

Linda K. Barth, Executive Director
Mile High Down Syndrome Association