Opinions Please!

Fragile X Syndrome
#1

I have an 9 year old boy who has been diagnosed with full mutation Fragile x. He has been in public school in a regular classroom since preschool. He is now in 3rd going into 4th and his present school is suggesting that he goes into a "contained" classroom in September. I am against it as I believe our Fragile x children thrive on the social behaviors of the children in a regular classroom. I think that this is their way of taking the easy way out. I also believe that this would not be a good option for him as he is not familiar with that "particular environment".

I would like opinions on this please!!!!!!!!!!!!!!!!

Thank You!

#2

I think you should really try to push to keep him as mainstreamed as possible. Unless he is physically aggressive or overly loud and disruptive, I agree, I think Fragile X kids model the behaviors around him and can rise (or sink) to the level they are around. Our daughter is 18 now but when she was in 4 & 5 grade she and other intensive ed students were all in the ‘regular’ classroom and were either directly serviced with an aid in the classroom and/or had math and english/reading resource at different times of the day. But they went to art, gym, and on field trips with the rest of the class and also had social studies and science with the rest of the class. Then we moved to another city in our state, it really hasn’t ever been the same( and it’s only 10-15 min away!). The school district and first elementary school she was placed in did not have enough resources to provide her with an aid or resource help and she ended up in another elementary school where she was mostly in a contained classroom and only with the regular 5 then 6th grade for art and sometimes field trips.(initially she was going to be placed in an elementary school where we were going to have to sign papers allowing teachers to restrain her!! I don’t think anyone even read her IEP!! She was never physically aggressive, I have no idea where that came from!) Her transisition into junior high was the worst!! She actually couldn’t cope with the stress of junior high and actually started talking to herself at home and at school, so often and so loud that it becausem disruptive and we had to try different meds like Abilify to help her function in school. She only used ABilify for a short time, she began having eye tics.

In short, I regret the time our daughter has missed out on being mainstreamed because when she was ‘dumped’ into the regular ed classes in junior high she couldn’t adjust. I really think you should stick to your guns and ask for and demand any and every modification and accommodation for your son possible to allow him to stay in the mainstreamed classroom! Good luck!!

#3

I have a 10 y/o son in 5th grade. I checked out the contained classrooms, and what I saw was not for Zach. He is educationally about kindergarten/1st grade level, but has a high vocabulary. The kids in the contained classrooms were more affected by their disabilities than Zach in many ways. Between his Abilify and being around his age group, he has progressed so much in the last year, and I thank his school for mainstreaming him and keeping him in a resource room environment several hours each day. He has a schedule like lunacopia's daughter had, and it works very well for him. I think being in a contained classroom would have frustrated him and held him back. He was even in band this year, performed on stage, and was very proud of himself! Two years ago, there was no way he would be in front of people performing.

After 6th grade, I'm not sure what will happen, as I don't think he'll be able to handle the junior high/high school environment. We've been really lucky with how wonderful his classmates are with him. I love that when I drop him off to school, they say hi to him and walk with him into school. Upper grades are going to be a lot tougher, so I am exploring what options we'll have for 7th grade and after.

JSB, stick to your guns and go with your gut. You are you child's best advocate. There is such a difference from one school district to the other as far as what resources they have to offer, based on their budget. Check into school of choice, if your area has it. That's what I did, and Zach goes to a school out of the district where we live.

Good luck to you and your son.

#4

Thank you very much for the feedback....!!

#5

I would agreee with the above answers that you want to keep your child with typical children as much as possible. I would suggest you also contact the National Fragile X Foundation. They have a facebook page where you can post these types of questions and you will get many replies. Send an email to treatment@fragilex.org to get started.