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Permalink Reply by Char Burke on March 6, 2009 at 12:12am

James Poysky said:

Here are a few things to chew on. I've had a lot of coffee this morning, so sorry about the verbal spew:

Not having dystrophin in the brain seems to increase your risk for having any kind of childhood cognitive/developmental disorder. These are typically not any different than what we see in the general population, it's just that having DMD makes them more likely to happen.

In addition to the full-length dystrophin that boys with DMD are missing in the brain, there are also five smaller versions called "isoforms" that the body makes as well, and are present to a greater or lesser extent in the brain. Because the promoters or "starting points" are located at different areas of the DMD gene, most boys make some or all of the smaller isoforms. Boys who are missing two important smaller isoforms are at increased risk of having significant mental retardation (also called global learning disorder in the UK). Aside from that, we don't have any evidence that specific mutations increase the risk factor for other types of problems, aside from the overall problem of missing full-length dystrophin that is mentioned above. Other things like family history, pregnancy/birth complications, etc. can all contribute to these problems as well.

Despite lots of research to the contrary, many schools resort quite quickly to a whole-word memorization strategy. Often times you will see progress initially, which makes everyone feel good. The problem is that children with dyslexia tend to max out at around 5000 or so words. You have to have about 15,000 to 20,000 words memorized to be a good fluent reader (most of us develop this during the course of normal reading development). I think that doing some sight-word memorization is OK, but it should not come at the cost of really trying to pound home the phonological awareness training and systematic phonics instruction. Progress is slower at first, but once the foundation is built they pick up speed. We don't usually recommend switching to a predominantly sight-word or whole language approach until after all attempts at PA training and Phonics instruction have been exhausted without success and the child is in the 3rd or 4th grade.

As I said before, not all kids respond to PA training and phonics instruction, but this appears to be the best bet that we have so far for most of the kids with reading problems. Also, whenever you are talking about "fixing" the brain, it usually responds best to intervention strategies that are very concrete and directly related to correcting the specific skill that is deficient. Therefore, it is highly unlikely that "alternative" strategies like colored overlays, neurofeedback, or exercise/coordination activities will correct the problem.

That being said, remember that every kid is an individual and very few neatly fit into "categories". Research and science give us general guidelines, but the unique strengths and weaknesses of the child need to be taken into account when attempting to correct these kinds of problems. Motivation plays a big role as well.

OK, I have to get back to pretending like I am doing some work.

Karen Barnett said:

My son is in 2nd grade and can't read at all yet either. It is definately a phonetic problem as James Poysky describes. The school is trying whole word memorization with pictures. It helps until you take away the picture and then he can't tell you the word by itself, so I don't know if this is the way to go. It is very slow going. I have read a lot on this subject and the difficulty that some DMD boys have with reading. Our boys are at higher risk for learning disabilities because dystrophin is absent and they know that it's in the brain as well. Why some boys are affected more mentally than others I don't know. I believe it has something to do with where the deletion is. James - I would be interested in reading what you have on the subject.

So - I am wondering where in the dystrophin gene are the two major isoforms that represent mental retardation? And, are there any articles on mutation placement in regards to physical and behavioral or cognitive symptoms? Thanks.
Char Burke

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Permalink Reply by Karen on March 19, 2009 at 8:16pm

Veronica Hinton from Columbia has been doing research in this area for over 10 years. Check her stuff out.
Karen

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Permalink Reply by Karen Barnett on March 19, 2009 at 11:42pm

Yep, she's definatly one to look up. She's done a lot of research in this area. Probably the most on DMD from what I have seen. I was fortunate to meet her at one of the PPMD conferences and talk to her quite a bit about my son. She's a great lady and really listened. She's advised me to look into Applied Behavioral Analysis. Expensive therapy, not usually covered by insurance but suppossedly very affective for autism spectrum disorders..

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Permalink Reply by Moein on September 22, 2012 at 9:59am

Hi,

My son who is 7 years hates reading and school.He is smart out of school and when you talk to him you will never expect that he has learning delay!he is too slow in writing and spelling,bad at Math.His attention improved,but he is still struglling

Please,anybody who experienced this with his/her DMD son?

Can those learning difficulties be overcome within the time?

I really need your feedback.

Thank you very much

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Permalink Reply by Andrea Cleary on September 22, 2012 at 12:42pm

Hi Moein,

Yes, that sounds like my son too, very smart but can't show it through written school tests. Simon finally learned to read well by grade 4 and now loves to read, but only about subjects he likes. He has some form of dyslexia and has to memorize whole words and numbers by sight. Math, especially word problems, are just horrible. But his IQ is very high in spacial/visual concepts, so if someone explains it to him that way (he has had a special education aide at school to help with this) he has a better chance of understanding what he is to figure out, otherwise he is lost. We asked the teachers to stop giving him a list of 30 vocabulary words every week and to give him a more manageable number like  8 or 10 instead to focus on, because he can only go by memory (I  tell him to visualize the blackboard which is behind his forehead when he closes his eyes). He started to get marks on the spelling tests like 6/8 or 7/10 instead of 2/30. It also helped his self-esteem. Now he often helps my husband who is also dyslexic (genius IQ but did horrible in school) to spell words! There seems to be some sort of auditory processing problem too. He has a hard time listening and having it sink in. Once he can visualize it, it's fine. His IEP allows for extra time to finish exams, especially ones with much writing. A few times the teacher allowed him to do an oral book report which we recorded on a iPod and she then listened to. Now he just began high school, and it was decided that he should be given notes by the teacher, a peer, or his aide will write them, so that he does not waste energy trying to keep up with note taking, and can focus instead on the actual learning. In primary school he was also given a "cheat sheet" set for math (multiplication table, angles reminder, decimal place reminder, etc.) so that he could move to the higher concepts without being stuck 3 steps behind the others, wondering what 4 x 6 was. Now he will use a calculator more anyway, but were not allowed in primary school.

Everyone tells us how mature and "with it" Simon appears when taling with him, like your son.

Give it time and try to figure out what type of learner he is, or how he learns best. If you can find an open special education person at the school it would help immensely. Even some of them are very rigid in their thinking and are not willing to "think outside the box".

Best of luck,

Andrea

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