Hi,
We just had Aidan's parent conference for kindergarten. His teacher says he's doing really well in everything, but really struggles with writing and drawing. I've seen his struggle with it - he has no interest whatsoever in learning how to write, and I've never pushed it because I thought it would come more naturally later, and that practicing too much would be too tiring for his hands.

Can anyone else with boys in maybe 1st through 5th grades give me some advice on what I should do with this issue? Should I push him to practice writing? Or is it something that is just taken away from him, and I should focus on having him learn something like an alphasmart? (I think that's what they're called).

Thanks very much,
Mindy

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I have to have one on one's with our school PT's as they said that 'stretching' is not rehabilitative and that is what they are there for. I have to stress that for our boys we are not retraining or rehabilitating anything and that stretching is about the best they are going to get as far as rehabilitative for Seph. I THINK they got it!
I heard about a private PT in a town about 1 hour from me that was actually putting weights on a boy and making him get on a treadmill! HOW HORRIBLE. The parents finally told them to stop (much to the PT dismay evidently!!).
I say this to say, that we just can't assume that they know or will even look up the info to help our boys!!!
Good Luck!
Hi,
Aidan's regular PT is actually very good - she brings movies for him to watch while she stretches him. They scheduled it during his weekly PE session so he doesn't attend PE. He did on the first day of kindergarten, and when I picked him up, he started crying, and said, "there sure is a lot of running in kindergarten." He didn't want to go back the next day until we told him he didn't have to go to PE anymore. Broke my heart. But then the next day, I picked him up, and he told me it was "the funnest day ever."

What I told Aidan's substitute therapist one time is that the harder she works him, the faster he'll end up in a chair. That because his muscle cells don't regenerate normally, the more they're used, the faster they're gone. That seemed to be start enough that she understood and stopped trying to push him.

Mindy
Hi Mindy. My son is in first grade now, but last year in kindergarten he had the same issues. This year is going far more smoothly for him . His writing has improved a great deal ( he goes to OT weekly) and he really enjoys it now and likes to write and draw at home as well, which he had no interest in before. I worried about the increase in writing in first grade being too tiring, but it hasn't seemed to be a problem so far. At home when we practice spelling or vocabulary he usually writes on a magna doodle, which he says is easier than on paper, or I lay out alpahbet magnets and he picks the letters out to spell the words. The same has been true for him with reading. He had absolutely no interest last year and struggled with phonics, but is doing much better this year and enjoying it. Good luck!

Kim
Hi

Have you read Veronica Hinton's work. She is at Columbia. She has been studying the role of dystrophin in the brain for over 10 years. One of her findings is that regardless of IQ boys with dmd have a weakness in complex verbal processing. She has found that reading tends to be delayed but they do catch up. I recommend her research for understanding what's going on. I have given summaries of her stuff to teachers and they have found it helpful. Erik was in the lowest reading group in 1st grade and was reading at 6th grade level in 3rd. As a 9th grader he was reading at college level.
Karen

Mindy said:
Thanks so much, everyone. I think that I will ask for an OT evaluation.

Now if I could just solve his reluctance to read!

Is everyone using reading tutors as well? Aidan is good at sounding out 3-4 letter words; he just doesn't enjoy it...
Thanks very much. Maybe I will try that approach.

Karen - do you have any of the research you mentioned? Or could you point me in the right direction?
Yes. Erik was one of her subjects so once a year she compiles the results of her research and sends it out. She writes a summary in concrete terms. I'm sure you could get on her list. You could try googling Veronica Hinton. Actually I think I have her e-mail address. I will look for it. Karen
Mindy said:
Thanks very much. Maybe I will try that approach.

Karen - do you have any of the research you mentioned? Or could you point me in the right direction?
Kelvin spent 2 years in preschool, the second year under an IEP, so the teacher was wonderful. She told us not to work with him at all at home, since she had worked with other kids with DMD. She said she wanted to help him. We didn't work with him and after a few weeks in Kindergarden this year, he now writes nearly every letter ok (it doesn't look great, but you know what they are). All, without OT and without us pushing or working with him. He learned them the last 2 months. I think a lot of it is age and they figure it out, what helps them out and what is most comfortable for them to write. Kelvin still struggles, but is very happy with what he does. We can't believe he did it, didn't think he could. We aren't ever going to be concerned about neatness, unless the school pushes, but, if they do, then it is they who has to do something about it. Michelle
Here it is: http://www.columbia.edu/cu/md/index_files/DMDProjectOurFindings.htm



Mindy said:
Thanks very much. Maybe I will try that approach.

Karen - do you have any of the research you mentioned? Or could you point me in the right direction?
Hi Mindy

Thanks Ofelia. That site gives a good overview of her work. Veronica's e-mail address is HintonV@Sergievsky.CPMC.Columbia.edu
She is very nice and easy to talk with. She often comes to the PPMD conference.

Karen

Ofelia Marin said:
Here it is: http://www.columbia.edu/cu/md/index_files/DMDProjectOurFindings.htm



Mindy said:
Thanks very much. Maybe I will try that approach.

Karen - do you have any of the research you mentioned? Or could you point me in the right direction?
hello my son mohamed he is 2 nd grade ,he has lot difficult on his stadies,if ur son has probleme about writing just asq school to give you more help about that like occupation therapies ,and he can give him more halp and i don;t know if he has the IEP PROGRAME,JUST ASQ IN SCHOOLABOUT IT
Jared has always had terrible handwriting too but is doing much better in 3rd grade now. He is quite artistic in fact. Give it time. It took Jared until 2nd grade to really get the hang of school.
Christian has always used an alphasmart at school for writing assignments. He struggles too much with the writing and then gets way behind the other kids in his class. He can type alot faster than most people and then the writing isn't hindered by legibilty problems. The new thing our school is using is an infusion and it is sooo much better than the alphasmart was.
if he struggles terribly with it like my son I would have him evaluated for it this can take some time but it should be provided.

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