Matthew repeated kindergarten due to social maturity issues, yet he did not exhibit the same learning challenges as his brother. At this time Matthew is a sophomore in high school and finished his freshman year with highest honors. I would have to say that just as in the physical disparities one sees in boys who have DMD there are also variances in cognitive abilities even among sibling or those with identical mutation type. Additionally, each of us has individual strengths and it is possible Matthew was better able to compensate for any deficiencies.
As much as is known about the Natural History of DMD there is still much that is not fully understood. Questions that come to mind include what other factors influence the cognitive profile associated with DMD and does this lead to greater rate of co-occurring behavioral or cognitive disorders? From what I have read the rate of incidence of ADHD and Autism co-occur more frequently in the DMD community, yet what are the triggers, etc... Researchers have spent much time on the physical aspects of DMD, while the cognitive discrepancies and delays are less studied and therefore less understood.
Thanks for explaining about the "isoforms". I have read about this and knew that they played a role. I was wondering if there was any way they could determine if these isoforms were affected and to what extent in an individual child?
Also while my son's school is doing "whole word memorization" they are not totally relying on that method. They are still trying to teach him phonological awareness. Another significant problem that comes into play is my son has memory issues. It makes it even harder when it comes to him remembering his letters and retaining things thus making the reading/learning process even more difficult. As well his ability to process information both receptive and expressive is slow.
My son is a typical example of that what James wrote. He had regular interventions at school and now by 3th grade he reads very well . Also his comprehension is exelent .( he reads in 2 languages fluently by now).It took lot of experiments and time but can be done.He was in 5-6 kids groups , but there was too much motion for him to concentrate. The best results start to be, when he was in one on one with special reading teacher.We also read every day at home without excuses.Took longer , and I was really afraid that he will be late with all schooling because of luck of reading, but it turns that we are like everybody else now. Big stone fall off from my heart. reading is a basic of everything in regards to school and homework and future.We are lucky with the school district, we have great specialists and there is not many kids in the classrooms . In case your school is overcrowded , you need to spent some time with advocacy there towards that one on one lessons, I bet , but tell them that that is the best and faster way , so they will not circle other options.I observed that with age he better concenrates . Or I would say is more interesting for him to concenrate , when he is on same level as others .Also with math you would need some extra time in the future. Jacob is on multiplications now and he is doing fine with 9's currently. I beleive that all the time he spent with my husband on math in previous years are paing off now.
Boys with DMD have the same kind of reading disorder that the general public does, it just occurs more commonly (about 40% of boys with DMD vs. about 5 to 10% of the general population). This is commonly referred to as dyslexia. Contrary to common belief, this is not due to a visual problem. Rather, 98% of the time it is related to deficits in phonological awareness (understanding that spoken words are made up of small sounds that are blended together) and subsequent problems breaking spoken words down into sounds and being able to manipulate them. As a result, they have difficulty on several levels of reading including matching up the correct sound with what they see (sound/symbol associations such as letter names and letter sounds). They also have difficulty looking at printed words, breaking them appart into their appropriate sounds, and then blending them back together to make the word.
Evidence suggests that boys with DMD respond to the same kinds of interventions that other children do, namely phonological awareness training and systematic (synthetic) phonics instruction. The problem is they need a lot of it, and they need it on a daily basis. About 70% of kids with dyslexia respond to this kind of intervention, and probably the more severe the root problem the less likely they are to get benefit from intervention. Oral guided reading can also be helpful in improving problems with reading fluency, but is probably not as helpful in addressing the core deficits. The earlier you jump on this the better the outcome. The brain starts to get more hard-wired at 9 to 10 years of age and it gets harder to make progress. Send a message to my account that includes your email and I will send you a learning guide for boys with DMD.
Above Dr. Poysky said "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).
Dr. Poysky - can you identify where in the dystrophin gene the promoters or 'starting points' are located?