Well, I was at a particular therapy place for OT this week and last week and both days the therapist really upset me with some things he said about Evan. I am not thrilled with this therapy place anyway but I stay with them because they are now helping to pay for things such as part of his orthotics. So now on to what was said.
Last week was the 6 month review of Evan's treatment and the therapist was doing an eval on Evan. He asked Evan to put his shirt back on and they got the sleeves on and then he told Evan to pull his shirt down, well Evan saw a toy that he wanted so he crawled over to it and then his shirt just fell down on his own so then the therapist says "I see he still does not follow directions very well. " He is a 4 year old kid who saw something that was more interesting than pulling his shirt down, in addtion he is not cognitively age 4. You would think a therapist who works with special needs kids would get this. Then he goes on to tell me in so many words that if Evan were not going to be getting Botox that he would probably not be seeing him because there would be no point since he would probably not be able to work past the tightness in his left hand and arm. So he will just give up on this child at age 4. What the heck kind of therapist is this.
Well, today we went back for our weekly session and he starts talking about how he wants to see what kind of function he can get with the Botox on board. He then says that Evan's left hand is just going to be a gross assist meaning that it is just going to help hold paper or hold his jacket so he can zip up his coat etc. It has been said before that lefty will probably be a helper hand so I tend to agree with his assessment but the therapist seemed to be saying that if he does not see any or enough change with the botox then there will be no need to continue weekly therapy because Evan's hand will not improve anyway. I do not have a problem with a therapist speculating that left will only be a helper hand but us doing all we can to get as much functionality out of it as possible. You don't just give up, especially on a child at this age. It would be like the speech therapist or neurologist saying well Evan's brain is pretty messed up in his language area and he will probably not have a functional speech so just forget about teaching him sign, pecs or using a communication device.
I do not care if a child never progresses past the age of a 3 month old, no therapist should give up on them because of this, children with special needs take longer to meet milestones and there are plenty of kids who walk at age 11 or sit at age 6 or 7.
I know you are thinking why don't you just get a new therapist or leave. Well, we waited almost 2 years for OT to come available at this place so there is not another available therapist. I want to keep them around because they also pay for some portion of equipment or orthotics. I am just so torn because I really do not know if this therapy is even doing anything for Evan, especially with the therapist and his attitude towards Evan. We will have to see what happens after January 13th when Evan has his Botox injections.
So we got the reports for Evan's therapy evals for this particular place, it goes along with the 6 month evals. So anyway during the eval the therapist asked if Evan gets tired when he walks and how long can he walk before he gets tired. And I said about 10 minutes. So in the report is says"Mother reports that Evan can only walk 10 minutes before getting fatigued, yet while in clinic he did not stop moving the entire hour he was here and was able to walk to the other end of the school parking lot and back without any apparent problems." I think the whole conversation started when I was stating how he is starting to outgrow his wheelchair and I would be looking into getting a new one. Both the OT and PT say he does not need a wheelchair and so I was explaining that we use it in the community all the time and there are not many places that I go without it. There are plenty of times when we are at the store or out and he is walking around and then stops and puts him arms up so that I can hold him. Halloween would have been a perfect example of this as he had to get in the wagon after every house. This whole paragraph in the report makes it sound like I am a mom who just wants equipment or not telling the truth about my son. I am so tired of people who only see him once a week or once a month thinking they know all there is to know about him in a 30-60 minute time period. I am so close to just quitting this therapy place because it is adding undue stress on my life. He is already getting quality therapy from school. I just don't know what to do.
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