My son is in first grade and hates anything to do with learning to read. I recall hearing somewhere that some of our boys have trouble learning to read. But I don't recall why. Is there a teaching method that works best for our boys? Any input would be appreciated. Thanks, Cindy

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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.
Cindy,
Both my nephew and my neighbor's sons (neither have md) have had a lot of difficulties with reading/comprehension in school. After a few years of struggling (and failing) they both have decided to enroll the boys in elearning instutions here. I am not sure if you have any schools like this in your area, but the school have been a life saver to these boys! This seems to be a recent trend and we have had about 5 e learning schools pop up within the last 2 years. It is a 'home school' premise where students are taught on an individual basis (on their own level of academic acheivement and using learning styles relevant for each child) with certified teachers. The schools are costly, but have given these kids a real chance at sucess! I just thought I'd let you know in case this is something you may want to look into in the future.
my son is in 2nd grade and can't read. we practice 4 nights a week. don't worry, it will eventually sink in.
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.
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.
I don't know yet, but it seems Kelvin will have troubles as well, he is now in kindergarten, but he even has a lot of "memory" problems. It did improve with taking Protandim, actually a lot, but I have read on here in the past that a lot of kids "catch up" around 3rd grade or so, that the first few years are the most difficult for them. Michelle
My younger son Patrick may be an example of how this can all evolve. When in Preschool he was uninterested in reading or alphabets. As hard as we tried to get him interested he had other ideas. So, we delayed his entry to kindergarten as he showed little progress with learning the alphabet and any form of reading. He was great with assembling jigsaw puzzles, even putting them together upside down. Geometric recognition is a strong point. By the end of the year he knew most of his lower case letters and none of the upper case. We had an IEP meeting and much of the discussion involved this issue as he was doing fine physically. The school developed a phonological awareness program for both classroom and direct one on one support starting at he entered the first grade. This program worked wonders and by the end of the school year he was reading "chapter books" including "Captain Underpants".

Patrick is now in the eighth grade and has been on the Honor Roll throughout Middle School. By choice he reads thirty minutes or more every night before sleeping and has read all the "Harry Potter" books.

Every child is different, yet with appropriate support it is possible for those needing help to overcome many of their academic difficulties. The trick is getting the staff the right information about your child and for them to tailor a program to meet their needs.

Brian Denger
Thank you all for your feedback. I truly appreciate it. Having this forum has been incredibly helpful!
Cindy
James Poysky said:
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.
Could you please send me a learning guide for boys with DMD as well. My email address is lesley@boltcorp.co.za Many thanks,
Lesley Henderson
James,
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.
Hi Brian,

What about your son Matthew? Did he have a similar reading problem? Since we are talking about brain isoforms that are not produced for certain mutations, one would think that this is different from the muscle progression of DMD for boys with the same mutation. I mean, we do know that all boys are missing dystrophin in their muscles and there are genetic modifiers that might influence the DMD progression, but the brain isoforms are produced for certain mutations and do not exist for others. So do most boys missing these isoforms have similar learning/cognitive problems?

Thanks,
Ofelia



Brian Denger said:
My younger son Patrick may be an example of how this can all evolve. When in Preschool he was uninterested in reading or alphabets. As hard as we tried to get him interested he had other ideas. So, we delayed his entry to kindergarten as he showed little progress with learning the alphabet and any form of reading. He was great with assembling jigsaw puzzles, even putting them together upside down. Geometric recognition is a strong point. By the end of the year he knew most of his lower case letters and none of the upper case. We had an IEP meeting and much of the discussion involved this issue as he was doing fine physically. The school developed a phonological awareness program for both classroom and direct one on one support starting at he entered the first grade. This program worked wonders and by the end of the school year he was reading "chapter books" including "Captain Underpants".

Patrick is now in the eighth grade and has been on the Honor Roll throughout Middle School. By choice he reads thirty minutes or more every night before sleeping and has read all the "Harry Potter" books.

Every child is different, yet with appropriate support it is possible for those needing help to overcome many of their academic difficulties. The trick is getting the staff the right information about your child and for them to tailor a program to meet their needs.

Brian Denger
Hello Ofelia,

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.

Brian

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