Replies to This Discussion

Permalink Reply by Karen Barnett on March 25, 2009 at 7:57pm

Absolutely Janine. When I post about my son I always try to be sensitive to the fact that not all boys with DMD have cognitve issues or learning disabilities and always try to remember to use the word "some boys with DMD" when discussing this topic. People need to understand that this disease affects all boys differently. Likewise, when it comes to DMD boys with cognitive issues like my son, people need to understand that these are real neurological problems and that the brain can be affected by this disease as well as the skeletal muscles of the body. I don't "believe" my son has cognitive issues to make excuses for his sometimes horrific behavior or the fact that he can hardly get dressed most mornings because he can't stand the feel of clothing on his skin. I don't think that my son is "putting on an act" every morning when he takes his shoes off and on 10X or his pants until they "feel right." So many people that are not living this and dealing with it everyday just don't get it. You'd be surprised how many people have never even heard of SID and OCD. Many think that these problems are something they can control or is some kind of act they put on. Many pass it off to bad parenting. Beyond dealing with this horrible disease itself this by far right up there as one of the harder aspects to deal with.

Janine said:

I think it is also important to point out to parents of young children that just because their son has dmd does not mean he will have cognitive issues. There is a higher incidence but they do not always go hand in hand.

Janine

Permalink Reply by Chris's Mom..Chris Wade McClusky on March 25, 2009 at 11:58pm

My son isn't autistic but sometimes he really keeps to himself. He doesn't have many friends and I think he prefers to be alone. I think he just has a hard time getting along with others who are not disabled.

Permalink Reply by Dianne Carroll on March 26, 2009 at 3:53pm

Hi Cristina,

My son Kevin is 11 has DMD and Autism also. He was diagonosed with DMD first at age 2 the Autism diagnosis came at age 5 even though he showed symptoms before that. A lot of doctors told me that he had delays and he would outgrow them. We had testing done and he definitly has autism. My younger son age 7 has DMD and learning delays, but not autism. I also have another son age 14 and who does not have DMD or any kind of learning delays or Autism. Makes we wonder just what is caused by the DMD and what is not. How old is your son?


Dianne

Permalink Reply by VELIA on March 27, 2009 at 11:41am

HELLO CRISTINA SON JOSHUA DIAGNOSED AUTISM TO HIM AT THE AGE OF 18 MONTHS, I STOP SPEAKING, NOT ONE WORD, AT THE AGE OF 5 YEARS EMPEZO TO ONLY SPEAK AGAIN BUT WORDS, NOW HE HAS ALMOST 9 YEARS OF AGE, AND SPEAKS MUCH MORE, HE ALREADY COMMUNICATES, AND HE SAYS TO YOU THAT HE HAPPENS TO HIM, WHERE HE HURTS TO HIM BUT IN THIRD PERSON, SAYS TO ME TO JOSHUA HURT THE FEET TO HIM, JOSHUA IS HUNGRY, ETC.
IN SEPTEMBER OF THE 2008 IT WAS DIAGNOSED WITH DMD, VERY IT LAST FOR MY, AND ALL MY FAMILY. THEN IT SAID THE NEUROLOGIST TO ME THAT WAS NOT AUTISM, THAT PROBABLY WERE AFFECTED ALSO THE CONTIGUOUS GENES, THE GENES THAT ESTAN TO THE SIDES OF THE DISTROPHYN ARE THOSE THAT GOES TO THE BRAIN AND WHICH PROBABLY THEY WERE AFFECTED ALSO.
TO JOSHUA IT DOES NOT LIKE THEY TOUCH THAT IT, DOES NOT LIKE THEY EMBRACE THAT IT, ONLY I, ITS FATHER AND ITS BROTHERS, HE IS A LITTLE OBSESSIVE, OF SMALL WAS OBSESSIVE MAS, IN THE SCHOOL IS A LITTLE SLOW BUT IT LEARNS, IT KNOWS TO READ AND TO WRITE, TO ADD AND TO REMAIN, ALSO HAVE A PHOTOGRAPHIC MEMORY, DOES NOT HAVE PROBLEMS WITH SPELLING, IT ALWAYS KNOWS AS THE WORDS ARE WRITTEN, IT KNOWS TO USE THE COMPUTER VERY WELL, ENTERS PAGES OF GAMES, IT COPIES FILMS AND NOBODY I TEACH TO HIM, ONLY APRENDIO, NOT LIKE, ALSO WRITES IN ENGLISH, IT ONLY WRITES DOES NOT SPEAK IT, AND IT SAYS TO BREAST THIS PALABRE TO ME IS ICE, SAYS ENTRANCE HERE, ALSO PLAYS VERY WELL X-BOX, LEGOS, PUZZLE FOR THAT IS VERY GOOD FROM SMALL, IT LIKES MUCH THE PUZZLES, AND THE PLASTILINA MAKES IMPRESSIVE FIGURES WITH THE PLASTILINA., THIS IS MY SMALL JOSHUA, IT MASTER MUCH, IS THE LIGHT OF MY LIFE, I ONLY WANT TO MAKE IT EVERY DAY HAPPY AND I ONLY ASK TO HIM TO GOD THAT LETS TO ME BE TO ITS SIDE EVERY DAY OF ITS LIFE. IT EXCUSES THE TRANSLATION, LITTLE ENGLISH.

Permalink Reply by cristina chandler on March 27, 2009 at 2:37pm

Hi Dianne
My son Samuel is 5, he was first diagnosed with autism at age 3 1/2 and just few months ago with DMD. Also my younger son 3 1/2 has DMD but no autism or any delays. I think afects each child diferently, I have the same question, looks like some kids are more sensitive to the distrophyn on the brain, is just a thought.
Cristina
Dianne Carroll said:

Hi Cristina,

My son Kevin is 11 has DMD and Autism also. He was diagonosed with DMD first at age 2 the Autism diagnosis came at age 5 even though he showed symptoms before that. A lot of doctors told me that he had delays and he would outgrow them. We had testing done and he definitly has autism. My younger son age 7 has DMD and learning delays, but not autism. I also have another son age 14 and who does not have DMD or any kind of learning delays or Autism. Makes we wonder just what is caused by the DMD and what is not. How old is your son?


Dianne

Permalink Reply by cristina chandler on March 27, 2009 at 2:56pm

Hi Velia
Yo hablo espanol, soy de Costa Rica
Samuel esta empezando a hablar un poco, yo tengo fe de que pronto va a hablar. Tengo otro hijo de 3 anos y medio que tambien tiene DMD pero no tiene autismo ni retrasos del desarollo, a veces me siento muy confundida al pensar que el autismo puede ser causado por efectos de DMD, parece que afecta a los ninos de formas diferentes.
Samuel el la cosa mas hermosa que existe y yo tambien quiero estar cerca cada dia para verlo crecer. Cuando receibimos el diagnostico de DMD fue devastador y todavia estamos tratando de aceptarlo.
Voy a tenerlos a todos ustedes en mis oraciones.
Cristina
VELIA said:

HELLO CRISTINA SON JOSHUA DIAGNOSED AUTISM TO HIM AT THE AGE OF 18 MONTHS, I STOP SPEAKING, NOT ONE WORD, AT THE AGE OF 5 YEARS EMPEZO TO ONLY SPEAK AGAIN BUT WORDS, NOW HE HAS ALMOST 9 YEARS OF AGE, AND SPEAKS MUCH MORE, HE ALREADY COMMUNICATES, AND HE SAYS TO YOU THAT HE HAPPENS TO HIM, WHERE HE HURTS TO HIM BUT IN THIRD PERSON, SAYS TO ME TO JOSHUA HURT THE FEET TO HIM, JOSHUA IS HUNGRY, ETC.
IN SEPTEMBER OF THE 2008 IT WAS DIAGNOSED WITH DMD, VERY IT LAST FOR MY, AND ALL MY FAMILY. THEN IT SAID THE NEUROLOGIST TO ME THAT WAS NOT AUTISM, THAT PROBABLY WERE AFFECTED ALSO THE CONTIGUOUS GENES, THE GENES THAT ESTAN TO THE SIDES OF THE DISTROPHYN ARE THOSE THAT GOES TO THE BRAIN AND WHICH PROBABLY THEY WERE AFFECTED ALSO.
TO JOSHUA IT DOES NOT LIKE THEY TOUCH THAT IT, DOES NOT LIKE THEY EMBRACE THAT IT, ONLY I, ITS FATHER AND ITS BROTHERS, HE IS A LITTLE OBSESSIVE, OF SMALL WAS OBSESSIVE MAS, IN THE SCHOOL IS A LITTLE SLOW BUT IT LEARNS, IT KNOWS TO READ AND TO WRITE, TO ADD AND TO REMAIN, ALSO HAVE A PHOTOGRAPHIC MEMORY, DOES NOT HAVE PROBLEMS WITH SPELLING, IT ALWAYS KNOWS AS THE WORDS ARE WRITTEN, IT KNOWS TO USE THE COMPUTER VERY WELL, ENTERS PAGES OF GAMES, IT COPIES FILMS AND NOBODY I TEACH TO HIM, ONLY APRENDIO, NOT LIKE, ALSO WRITES IN ENGLISH, IT ONLY WRITES DOES NOT SPEAK IT, AND IT SAYS TO BREAST THIS PALABRE TO ME IS ICE, SAYS ENTRANCE HERE, ALSO PLAYS VERY WELL X-BOX, LEGOS, PUZZLE FOR THAT IS VERY GOOD FROM SMALL, IT LIKES MUCH THE PUZZLES, AND THE PLASTILINA MAKES IMPRESSIVE FIGURES WITH THE PLASTILINA., THIS IS MY SMALL JOSHUA, IT MASTER MUCH, IS THE LIGHT OF MY LIFE, I ONLY WANT TO MAKE IT EVERY DAY HAPPY AND I ONLY ASK TO HIM TO GOD THAT LETS TO ME BE TO ITS SIDE EVERY DAY OF ITS LIFE. IT EXCUSES THE TRANSLATION, LITTLE ENGLISH.

Permalink Reply by cristina chandler on March 27, 2009 at 3:04pm

Hi Janine
I think that is very important
My youngest son CRIS also has DMD but no autism or any developmental delays. Make you just wonder how affects kids in differents ways and why some have cognitive issues and others no.
Cristina
Janine said:

I think it is also important to point out to parents of young children that just because their son has dmd does not mean he will have cognitive issues. There is a higher incidence but they do not always go hand in hand.

Janine

Permalink Reply by Ofelia Marin on March 27, 2009 at 3:38pm

I did not read a lot about this but I do know that a very large number of genes impact the brain, not to mention the gene modifiers. So who can say if the missing dystrophin is at fault or there are more complex processes going on? They definitely were not able to prove one or the other so far and the papers I looked at used too small a sample size to be convincing.

Permalink Reply by Dianne Carroll on March 29, 2009 at 12:04pm

cristina chandler said:

Hi Dianne
My son Samuel is 5, he was first diagnosed with autism at age 3 1/2 and just few months ago with DMD. Also my younger son 3 1/2 has DMD but no autism or any delays. I think afects each child diferently, I have the same question, looks like some kids are more sensitive to the distrophyn on the brain, is just a thought.
Cristina
Dianne Carroll said: Hi Cristina,

First let me say I am sorry about both your sons diagnosis. I really never thought I would meet someone with two children with DMD and one also having Autism, and while it is nice to meet you, I am sorry to meet this way. How is Samuel doing? My younger son is in the process of many evaluations to see just what his other diagnosis will be, not Autism but maybe something like auditory processing. We have been part of Dr. Hinton's studies of boys with DMD and learining delays for several years now.

Dianne

Hi Cristina,

My son Kevin is 11 has DMD and Autism also. He was diagonosed with DMD first at age 2 the Autism diagnosis came at age 5 even though he showed symptoms before that. A lot of doctors told me that he had delays and he would outgrow them. We had testing done and he definitly has autism. My younger son age 7 has DMD and learning delays, but not autism. I also have another son age 14 and who does not have DMD or any kind of learning delays or Autism. Makes we wonder just what is caused by the DMD and what is not. How old is your son?


Dianne

Permalink Reply by Paul Cliff on March 29, 2009 at 1:05pm

Don't forget that autism is not a disease. It's a label created by mental health professions to describe collection of symptoms. In our son's case, some people at his school district, a collection of speech therapists and one educational psychologists "diagnosed" him with one of the autism spectrum disorders, and wanted us to enroll him in their isolated special ed school with the severely mentally retarded and brain damaged children. That didn't seem like a good idea to us, and we enrolled him in private school where the symptoms which caused them so much concern have largely faded. As a fifth grader, he has an active social life, performs at or above grade level in school, but can be a huge pain in the neck when it comes to needing things to be predictable and hating to change gears from one activity to the next. That being said, if there were some special ed resources in my area I trusted, I would welcome their input about getting Alex to be more flexible. It can be hard on us, his teachers and his little brother when he's really on a roll, especially if he's tired or hungry. Steroids just about sent him (and us) around the bend starting about the second month after we started him on them, but he was almost back to his normal self after about six months or so.

Permalink Reply by MarcosDad on March 30, 2009 at 10:54am

Have you guys looked at the autistic spectrum characteristics?

According to these characteristics, everyone has autism, just a matter of how bad. They used to call it unique qualities of an individual. There are people with "real" autism and those labeled with it. Not every brain is created equal but yet they measure them all to a certain standard. I don't understand this nor do I agree with it since we are not created equal. All of a sudden there is a epidemic of autism. No, there is an epidemic of misdiagnoses based on the definition of autism and the autistic spectrum disorder family. This puts those in need of real help at a loss. Granted early intervention for those that fall behind is needed but don't label them as autistic, they are different. What about the really smart ones, do they have a disorder? No we increase the bar to that level and say everyone below that bar has a disorder.

Sorry - this is a touchy subject with me because I have seen specialists for my daughter who have labeled her with so many different things which equals they don't know anything. PDDNOS - ever heard of it? Pervasive Development Disorder - Not otherwise specified. Not otherwise specified - what the heck. It's a catch all diagnosis.

Permalink Reply by Paul Cliff on March 30, 2009 at 5:34pm

There's a whole controversy about this in the psychology profession. The definition of autism has evolved over time to include more people. I am sure that there are good reasons for those definitional expansions have nothing to do with money. However, I am afraid that in California, it's all about money. Here, education is mostly funded by the state and the per pupil per diem money available for a school district for a special ed student is many times the number for a non-special ed student It's very easy for a school district to goose its numbers by having all the kids who are a little more work for the teachers tested in order to get some of this money, especially when the very people doing the testing work for the district which will get the money.

• ‹ Previous
• 1
• 2
• Next ›
• Page