IEP's Its hard to hear the bad news

i have 3 boys with DMD, I just recently went to my 6 year old sons IEP. It is hard to sit through it. Not only is my son affected with DMD he has major learning disibilities. I felt like a target in the room they sat and told me all the things that he couldnt do it was devestating.They are pulling him out of regular kindergarden and putting him in a self contained classroom. I met with the school phychiatrist, teacher, ot/pt and principle. I felt so alone in there about five minuets into the meeting the principle said Ill be back in a few minuets and he never returned. They all go through there list and tell you we did this test and that test and he is not doing what a normal kindergardener is doing.He is not making friends and kids are just ignoring him because of his behavoir. So they are putting him in a special education class room.He has to adjust again to a new enviroment and a whole new school. I know that my child is special and that he will shine its just so hard to hear that he is struggling.

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Comment by Vickie Lee Beard on December 17, 2008 at 12:09pm
This is heartbreaking. Let me tip my hat first off to those of you who have 3 sons with DMD. I myself have 2, now much older than any of yours and my heart goes out to to you. Both of my boys had ADHD and one had behavioral problems. Elementary school was difficult for both but harder on my older boy, my younger sons IEP called for more one on one in the classroom with some special Ed instruction..Middle school and high school are even more of a challenge because you lose your support programs unless you are in special Ed classes. By the time we were in Middle school our IEP's were so involved it took an attorney to convince school to follow it. In high school when an aide was needed to be shared by my two sons, I found and paid their salary. After my older son graduated, my younger son felt isolated and left out by the the school system, no bus came for him or forgot him at school, his IEP was not met in many areas and he was fed up. We pulled him out in 10th grade, he took his GED and he and his brother along with myself went to college together. My suggestion to you, this is your child and you know what he needs. Don't let the system beat you down. Find and attorney who specializes in Special Ed, hopefully pro-bono. If that is not the case and you fight your school system and win, the school system will have to pay your attorney fees. It should not have to come to this and perhaps with only one child it is easier, somehow though I doubt it. Good luck, please e mail me if I can help with old war stories and experiences.

Vickie
Comment by Teresa on December 16, 2008 at 2:11pm
In my family we have 5 boys all together with DMD and my 3 boys have learning disibilities my sisters 2 boys don't they are very inteligent. I'm really glad that all of our boys aren't affected by it. Although my boys are affected by learning dissabitlities I do not think they are not normal. It has been heartbreaking to see them struggle in school but on the other hand I would never change them anyhting about them. Jeffery is my oldest 16 years old he is an artist he makes pottery Its increadible stuff. I believe each child is special in there own way.
Christopher is struggling and I'm glad that he is going into the special education class because he will succede in this class and I know it will be good for him.
I want to thank you all for your comments we are all going through a lot of the same thing and its nice to here everyones experience's thank you all for your loving support.
Comment by Samantha Dearing on December 16, 2008 at 12:07pm
I really wouldnt say that all boys with dmd have learning issues. I know several who make excellent grades and have never once had a problem with school work. Justin had a problem when he was younger, special ed for part of the day and so on, but now that he is in the 7th grade, he is on track and on grade level. He is in whats called a double block math class for extra help, but his grades are excellent now. He even scored excellent on all the state standardized tests! Yes, it has been a struggle to get him to this point. We had many times of frustration and heartbreak along the way.
Bottom line---your child WILL shine! Wether its academically or not, he WILL!!!

--Samantha
Comment by Char Burke on December 16, 2008 at 12:54am
I have done alot of reading - all boys with DMD have learning issues because they don't have a smaller isoform protein - dystrophin in the brain. This is the case even if the boys have normal IQ levels. Google Dr. Victoria Hinton and read her observations. If you can get into the PPMD UK - then look for education and tool kit - this will give you great info about it.
Secondly, the pricipal is obligated to attend those meetings but they don't have to stay the whole time.
So, this wasn't a reflection of you....Most likely, he had gone to many and needed to do something else.

Our son struggles too albeit he is in a special program for kids with motor planning issues and has help from OT/PT and speech therapist. His class also mixes with the main stream kindergarteners. I am not sure what your school district has to offer but some of the classes can offer alot esp. if the therapists are good and committed....I think the boys do catch up but there are some that don't....I was crushed when the IEP preschool team recommended the motor learning class but it's been a good thing for him. I would rather have him in an environment that he can succeed with get special attn than in a general kindergarten that he would fall in between the cracks b/c there are 30 kids and feels poorly about himself b/c he can't keep up.

I understand your grief - I do - but just wanted to point out some of the benefits of a special ed program too. If you want to email me - pls place an email on my page here on the PPMD site.
Char Burke
Comment by Karen Barnett on December 15, 2008 at 9:10pm
Hi Theresa,
My son is 7 with DMD and also has major learning disabilities and behavioral problems (due to ADHD, OCD, sensory issues, etc). He struggled through the general ed kindergarten class for about 7 months. It was so over his head that he was really frustrated and acting out bad. As much as I wanted him to stay in general ed and be like the other kids, it was just way over his head and he was really suffering. That was such a tough year. He is now in the 1/2 day resource room and doing much better - behaviorally. Academically he is still really struggling. The class consists of only about 6 kids and the instruction is a lot of one on one. He is much happier in this class. I don't know if my son will ever learn how to read but he shines in so many other ways that it is just not that important to me anymore.
Comment by Susana Arroyo on December 15, 2008 at 7:37pm
I'm sorry to hear about your son.

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