United Brachial Plexus Network, Inc.

OUR OT SUGGESTED THAT J HAS SENSORY INTERGRATION DYSFUNCTION. I AM WONDERING HAS ANYONE CONNECTED THIS WITH ERB'S? DOES ANYONE HAVE A WEBSITE ON THIS? OR POSSIBLY CAN GIVE SOME INFO ON IT?

Can someone explain to me what this is and what the signs of it are.

Here is a website with many articles on SI.

http://www.comeunity.com/disability/sen ... owitz.html

I can only speak for myself but I still have many issues but as I matured I learned how to compensate around them.
I know other adult/obpi that have some of the same issues I have.
Certain smell, fabrics, flashing lights, large crowds will all make me uncomfortable.
I have always worn my clothing too big.
I like my clothes loose and comfortable and soft fabrics.
My Mother use to call me the little girl from the fairy tale "the princess and the Pea."
Sun light requires Sun glasses... they are on and off and on and off...
I tend to sit very little and am a bit fidgety.
It has to do with the lack of sensation in my arm and face.
I have Horner's so I assume that is the reason the overhead lights drive me crazy.

Kath (robpi/adult)

Kath,
I have a question that only you or maybe another adult can answer. Did you fidgety ways get you in trouble at school? My son came home from school yesterday with a note from his teacher saying he wouldn't sit and jumps around like he has ants in his pants.......I see it also at home, but say it is just him being 7! Maybe he has more SI issues than I thought. I know the overhead lights thing is an issue, we have spoke about this before. Is there anything that can be done with these issues? Gayle

Gayle
I always had ants in my pants!
My Mom said my fanny and a chair had a passing acquaintance... LOL..
I still don't like to sit too long.
I went to a strict Catholic school and we were expected to sit up straight and still.
I was quiet in school because I think I was on overload and would drift off daydreaming out the window.
My friends and family think this is funny because I am not quiet and am very outgoing.
I guess I shut down because of sensory overload.

I personally don't like anyone to sit behind me or walk behind me in restaurants.
My husband laughs because I always wanted the seat in the corner, so no one could come up behind me.
I startled a great deal as a young person.
Now, I have more protective compensations in place that prevents me from getting startled.
It's a good thing we are married 40 years this month because this morning...
I had him cutting out the tags of the shirt I had on.

Check to see if his clothing is loose enough and the fabric comfortable.
I will still fidget if I wear something that is bothering me.
I find this will keep me from focusing.
I have a lot of hobbies that require me to focus and I make sure I am comfortable before I start a project.
If I am comfortable I have a very long attention span.

I don't like anyone in my personal space uninvited!
But I think everyone is like that...
I was extremely affectionate as a child but did not like it if someone touched me unannounced...

The teacher really needs to understand that he is not being spoiled or demanding.
I think the teachers should be made aware that this is a physical injury and it causes the SI problems and we can't fix it.
They can help by seating us so that the lights and the noise level are not a distraction and problem.
He may need to be seated in a comfortable place in the room.
Perhaps the noise level in the classroom, if he is in the middle of the room, causes him to be uncomfortable.
He does not understand that and he may not be able to communicate it.
The overhead lights are so ANNOYING to some of us that we become irritable.

We just have to learn to adjust and live with it.
I hate to be in the center of a crowd.
I prefer to be at the edges so that I don't feel uncomfortable.

This is just my opinion after living with this.
Kath ( adult/robpi)

Kath, I would like your permission to print your response and give it to his teacher. Is this something I should get him to a doctor for os it there nothing I can do? You so described my son, it is scary. He too is affectionate, but hate being touched unannouced. I always buy his clothes big, but don't always cut off the tags....he hates new jeans but once he has worn them for 100 times....he is okay. He does ask for the tag to be removed if the shirt is smaller and the tags touch his back. This is weird, just another thing these BPI children have to worry about. He too has issues with noise and cannot stand to sing on stage because of it. Thanks Kath, maybe my child isn't just being naughty. he cannot help it......poor thing ! Gayle

Oh my gosh... i was just going to go on the forums and ask the same thing! I am currently in the process of hunting down an OT that has experience with Erb's and sesory issues! They suggested that our daughter have Listening Therapy thru Vital Links...have you ever heard of any of this? My daughter is 2 and doesn't have a problem with listening or anything it's just what it is called. Feel free to mail back.

Gayle
Please give it to the teacher.
I think the teachers don't understand that this is not emotional but part of this birth injury.
At least on the part of the OBPI child.
It might help her understand and also give her some clues to possibly getting him to settle down.
Maybe he will be less distracting to the rest of the class.

I am sure that your PT/OT can help with sensory integration.
But I don't think anyone can cure it in our case.
I am not sure it is something that can be cured but it will get easier to cope with.

Nylon thread will drive me nuts and I am still not smart enough to check before I buy... LOL...

Most people do not even know I have issues with these things because I hide it well and compensate without much fuss...
My granddaughter thought I was loosing it, because I had a shirt (PJ) on inside out.
It was new and I wore it and did not realize that the seams were annoying me until about the third time I woke up...
So, I turned it inside out and went back to sleep!
I gave it away the next day because I won't wear it again.

He is only 7 and most normal boys at that ages are little wigglers and are always moving...
He may be just a little bit more due to his other issues.
I have a 7 year old grandson and he is constant motion. But I am the grandmother so it does not bother me at all.
When I was little my family constantly told me, "Kathleen can you just sit still for a minute."

Hopefully he will outgrow or at least learn how to work around some of these issues.
It is not that difficult to over come as an adult.
Once I understood what was going on with all my quirks I became more comfortable with them.
My husband also was able to understand all my quirks and thank God he always thought they were funny.

I thought I was normal and did not realize all of those feelings were out of the norm.

Kath

Thank you for all your help Kath. I was in his classroom today to volunteer and noticed that the teacher has him sitting in the middle of three very loud, boys. I am wondering if this could be part of the problem. He used to sit in the last row, front seat but was surrounded by girls. I will talk to her next week, she usually listens to what I have to say. I just don't want to have him labeled as the "BAD KID" or something like that. Another thing I noticed is that she has bright colored leaves and pumpkins hanging from the ceiling. This could be an issue to. When school started she had softer colors hanging up.....if that makes any sense. Thank you again Kath, don't know where we would be without you Adult BPi's who have lived this all ! Gayle

Gayle:
Juliana has a gamut of sensory issues. We had a great ot thru EI and she really helped us with those issues. She was also a great source of information. I am so thankful to have had such a person early on in our learning curve.

Juliana has "auditory defensiveness". Which is just what the name implies: she reacts to sounds. She also has "visual defensiveness" where she is very sensitive to changes in light. And yes, she wears sunglasses whenever possible, especially in the summer.

In her first grade class, her teacher just moved her from a table which had more active and noisy kids to a table with very quiet kids. Her teacher noted that she just seemed not to be able to get her work done at that table. She always seemed to be "day-dreaming". Again, I am lucky that Juliana has a fabulous teacher and is in an inclusion classroom. She noticed this problem and thought about what I had told her about Juliana. And she moved Juliana to the quiet table. It has made a world of difference. She gets her work done now and generally seems more "with it" in the classroom.

So, even though she is no longer covering her ears or hiding in a corner as a response to loud sounds...the general "noise" in a classroom is still an issue that we have to deal with.

So definately ask him to be moved to a quieter part of the class room.

good luck,
claudia