United Brachial Plexus Network, Inc.

Thanks Claudia, I always assumed that Brandon was just being a boy. He is a little spoiled because of being the youngest of four and the whole BPI thing. But I didn't think I did it this bad. Then when I got Kath's reply I just knew he couldn't help it. I feel bad now. I will go and talk to his teacher. She is pretty understanding. Gayle

Gayle, don't feel badly. Juliana is my fourth (and last) and I know I let her get away with things that the others couldn't. However, she is generally such a good kid that it doesn't really make her a spoiled kid.

Like I said, I was lucky to have someone educate me. One of my twins was (is) an awful sensory kid. Couldn't be touched without warning, would strip off her clothes... it was hair-raising. I didn't know anything about sensory issues for her but have learned to handle the sensory stuff since Juliana was born. When I first read the Out-of-Sync Child, it was amazing how much of it applied to Isabel. So, talk about feeling badly...I can sympathize.

However, just go and talk to the teacher about some changes that can be made in the classroom. And, you can do some stuff at home that definately help. You can try brushing. We brushed Juliana all over, not just on her arm. I rubbed all different kinds of fabric on her too. Seems a little silly, but it works. I highly recommend the book too. The cases in there are really extreme, but you will find some ways to deal with what you are seeing.

good luck,
claudia

So this is why Brandon strips when he gets home from school. Doesn't matter how cold it is, we live in Illinois....he gets in the house and he is down to his underwear. Maybe he will leave his t-shirt on or go and get daddy's big t-shirt. Thank you for all your help Claudia ! GAyle

Hello,

My BPI son, is now 7 and was diagnosed with SID at age 5. We do have him in OT therapy for it and it helps. Here is a good resource for parents and teachers. http://www.sinetwork.org/. It does affect alot of things. My son will not wear socks, and right now button his pants is a challenge. He is in 2nd grade. Last year his teacher was great. This year his teacher really does not understand him. He is covered under section 504 and we have alot of modifications. SID can affect alot of different behaviours and can be inconsistant. It affects his attention, getting out of his seat,. We now have set up he gets to leave his seat to take a 5 minute break he goes and sits on the floor with a bunch of pillows and reads a book. He also sits right infront of the teacher, with the class to his back. It also takes him longer to respond to questions. My son is very bright but at the beginning of the school year, we always go through a period where his teacher has academic concerns. Then they test him, and realize that he does comprehend and understand the work. Although, he is constatnly moving. He reads and comprehends at a 4th grade level. He has difficulty with visual spacing, eye hand coordination, writing,. Some school districts do not recognize SID so you really have to give the teachers an education. I got my son covered under a program called SAIL. If his teacher feels he needs to go to that room which is fewer students and one to one assistance, then she sends them there. He actually prefers to do that. Normally, you have to be 1-2 grade levels below to get the Sail program, but when my son was in Kindergarten I took all of SID literature to the Principal and got it writing that he does not have to below grade level to have this, but rather whenever his teacher feels that he would learn better. We did not quealify for IEP or special education, because my son is very bright. He may qualify this year if I get him tested for TAG, talented and gifted.

If his teachers do not keep him ahead, then he gets very bored and will refuse to do any work that is too easy for him. Next year, thninking about TAG or private school. Good Luck with your research and stick up for your son.

Why is it that no one has ever noticed this before?? IT was his disipline letter and this web site that called my attenetion to this matter. Like I said before, I just said it was because we spoiled him. His siblings were 11,7 and 3 when he was born and they treated him like a prince. So I just thought this was the way it was. Now, more and more you guys are telling me things my son does. I never ever thought about the fact that he doesn't like clothes etc. the fact that he doesn't sit still....WOW this is incredible. I want to thank everyone although I didn't start this post, you have been so helpful . Sticking up for my son is no problem, I will go on that website next ! Gayle

Gayle
Don't feel guilty there is no way that you could have known. When we are children we act out because we do not have the words to describe our feelings.
When I was a child the doctor (specialist she took me to) told her there was "there is no pain with Erb's Palsy". We know that is not true and our family doctor disagreed with the big shots... I was lucky.

I am the youngest of 8 and the 4 other surviving children were 14,13,11 and 7 when I was born. They were worried I was spoiled and was acting out.
I once toe walked for a very long period only on my right side and they told my mother it was an act...
Since I remember no one listening or understand that my leg hurt I was possibly in a growth spurt. I was small and was constantly being told to put my heel down.
Duh... this year my PT said my hip is higher and my leg is a tiny bit shorter and my foot does not fully flex. The entire right side of my body is smaller.

They (the medical profession) have so much to learn about obpi and the total impact on our body and brains.

Glad I could help because I have been so busy hiding these "so called little quirks" I never wanted to call attention to myself... Now I don't care and if someone says anything... they get and education on bpi and how to prevent it... Awareness at ever opportunity so that other children to not have to deal with this in silence.

Kath (robpi/adult)

Kath
I left a reply for you on the General Message.
How do you prevent it?

Luke LOBPI 23

Thank you thank you thank you. My husband went and made an apointment with the teacher. Well, I have to go, because like he said, I know more about this than he does. I am leaving in about 20 minutes. She did say though that this might be what the problem is but she would never have thought of it if we didn't bring it up !!! Gayle

Boy, that was painless. I showed the teacher the print out of this thread and she said, boy that is Brandon to a "T". It was crazy. She already has testing in the works but agrees that this could be the issue we are dealing with. She also stated that this is a great place for us to come(I ALREADY NEW THAT) to get information. Take care and thanks again !
Gayle

Gayle:
I am so happy for you!! It is wonderful that Brandon will now be able to get help and that you have an understanding teacher.

Sensory issues do not go away, but the effects can be lessened and the kids can learn to deal with them. Kath learned on her own (the hard way) but now that we know what sensory issues are, we can help our children so it isn't so hard.

good luck,
claudia