Our son is 6, in first grade, and is struggling with a lot of what I'm finding are common academic/cognitive issues with kids with DMD. He is bright and interested in learning, but he is struggling with developing literacy skills. A lot of the keywords I've seen here and elsewhere (phonological processing, verbal IQ) are very relevant to what we see as his specific issues, but the school is not very engaged in tailoring resources to meet his specific needs. We've had several meetings with staff and teachers at the school, but I get the impression that there is a cognitive component to DMD. I tried bringing clinical research with me to the last meeting but the reaction was akin to waving garlic at vampires. :)
We are still working with the school, but I wanted to see if anyone had come across any independent resources that worked well with their kids to help compensate. Books, software, websites, etc. Any experiences to share?
I was on this page for another reason, but saw your post and just couldn't not respond. I had similiar difficulties when my son was beginning school. He is almost 15 now. My suggestion is to get your son evaluated by a learning consultant and try to initiate getting him an IEP (Individualized Learning Plan). They may have to clasify him as having a learning disability which is sometimes hard to hear as a parent, but it will get the ball rolling on getting your son the help he needs. My son has always had some struggles in school, even more so in math. Early on in his education, we had him in pull out reading classes, then he progressed to in class support, now he is on his own. He still has to work harder than most kids (like everything else in his life), but he can do it....and even makes honor roll sometimes. The only help I give him at home now is that sometimes we order him audio books that he can listen to while following along in the text. This helps to keep him at pace with other kids and decreases frustration when tired.
Where there is a will, there is a way, I say.
My son, now age 10, also struggled learning how to read. In the early grades, we spent a lot of time on the Starfall.com site. We also used the book Reading Pathways Simple exercises to Improve Reading Fluency by Dolores G. Hiskes. We read every night books that he enjoys. He tested in the average range in Kindergarten, but I saw signs that he was going to have a hard time so we waited and had him tested again at age 7. At this age he finally showed a significant enough discrepancy between his IQ and reading achievement scores to be classified to have a learning disability in this area. We did try the Lindamood-Bell reading program which helped him a lot- but it was very expensive. He currently has an IEP which gives him additional assistance in this area- some pull out reading instruction and accommodations to have much of the standardized tests read to him. We also find audio books to be helpful.
Request and insist on an IEP, then request an eval for learning disabilities. In order to get anything done and the school to get compensation, you have to make everything offical. This will be especially important by 3rd grade, or whenever your state has mandated testing.