United Brachial Plexus Network, Inc.

My son would run, screaming, if I were to vacuum, dry my hair with a hair dryer, take a shower (he would stand outside of the bathroom and sob), or run the garbage disposal. When the association folks mowed our development, he ran screaming for me and/or his room - even when they were far away from our house. Firetrucks/police/etc would cause the same reaction (today - as an almost 10 year old, he still runs from loud trucks)

He also would have screaming melt downs if we put him in sand or on the grass. He would hold his arms, hands, and legs as far away from the sand/grass as possible.

Toothbrushing was agony for everyone involved.

Food had to be pureed - he ate Stage 2 (and a few 3's) until he was 2.5 years old (nothing else). Food had to be room temp or he would freak out - cry and refuse to eat.

Tags in clothing would cause melt downs - he would simply sit down and refuse to move - while picking at his clothing. Seams in socks caused the same reactions.

He would cry non-stop if his hands were messy/dirty/sticky.

Add to this that he didn't seem to have any idea where his body was in space - he would walk off of curbs and our front concrete steps, and into walls and furniture.

I'm sure that I'm fogetting something - but hopefully, that gives you some ideas of behaviors.

Okay, here are some more clues....
My son would never have his pictures taken professionally. The overhead lights were too much, he would have a tantrum, he too would not wear anything with a tag, his jeans are either purchased second hand, or washed about ten times before he will wear them, He too hated anything but room temperature items.....I didn't recall that till the last poster mentioned it. HE cannot be in a room with others yelling around him, but can get quite loud himself. In church, he sits with his ears covered because the surrounding noises bother him. He doesn't like "LOUD",(bright colors) he prefers blue and green. He will not even consider being in a room that is too bright. He had a fit at school because the teacher had all the lights on with the overhead projector. (SHe will never forget that again ) He always wears sunglasses when we are outside.....even when it is snowing. He loves the snow but hates it falling on his face...Nothing hanging over his head...even at school when the teacher puts the kids artwork hanging from the ceiling it needs to be away from his desk......My son hats the shower, however, when we finally get him in there, he hates the thought of getting out and then it takes us forever to get him out......and then only into a towel from the dryer still warm and right under covers......he won't use any soap with the little crystals in it. He too hates his hands dirty....he won't wear anything without a t-shirt underneath. HE will not ear a hat, a big disadvantage since we live in Illinois.......but he will wear a "HOODIE" but never ever a scarf around his neck......When he was little fire trucks and police cars would send him running to mommy covering his ears the whole time. Also, the seams in socks.....we threw away more socks than any one person should have to because the seams if they weren't just perfect, he wouldn't wear them.....we knew we were heading for a bad day if we forced the issue......I finally found some socks that he will wear without fussing....sooooo.....that is all we buy. I agree with the vacuum and hair dryer and the lawn mower...now that he is old enough to help daddy it doesn't bother him so much, but he still hates the vacuum....it is kind of funny to see him and the dog headed for a quiet room away from the vacuum. I Just want to add that I felt my son was just too spoiled until this topic came up one day after he got in trouble at school.........I have three older children and we all did a pretty good job of spoiling him. It is alot different now that we know what is going on. I used to vacuum while the kids were getting ready for school before I went off to work, now you know what? It isn't that important. Nobody sees my unvacuumed carpet when no one is home. I have changed alot of things.......once you know that is is SID, you make adjustments and it is not that terrrible....yes, it is still hard, but is do-able..... GAYLE

You guys have said it all! And I'll add that for 3 years mine couldn't go through a big public door of any kind. I had to strap her into her stroller and she'd act as though I was killing her. Changing from outside to inside, inside to outside, go INTO places where who knows what would be inside. And if there was a light just inside the door or a high ceiling she would just shriek to high heaven.

Sensory integration tools like swings (swinging in circles) has really helped. I'm trying to get one of those for inside the house so that she can swing before school and start the day off better.

Gayle, so many things...Juliana has it too. The loud noises and the lights--AWFUL!!. I have NO IDEA what size clothes she wears as there is not a label to be found!! We live in NY and a turtleneck is akin to a strangling... The gagging is just terrible. Especially when she was younger (she is 6+ now), she is better now. But still she can puke on command (ugh). Only this year am I able to really brush her teeth, but the back ones are really hard to do and cause to, yes, gag. The dentist is a nightmare. They are fabulous-they use two hygienists-one to suction the vomit as it comes up and another to do the cleaning.
When she was in preschool she could handle the planned events, but not free play (too much noise, movement, activity) so she would take a book and hide inthe coat closet.
Hair fixing is as much fun as teeth brushing. But without the gagging.

She is easily distracted in the classroom as there is so much going on. I think she likes the pullouts because it is quiet in the ot room.

She also fell, stepped of curbs wrong. And she still walks into walls, tho I'm not sure if that is more about not having sensation in her arm...

We have dealt with this before, as one of my older kids (nonbpi) has issues like this too. I wish I had known then what I know now.

The most important thing to remember is that they are not trying to be difficult. This isn't a power struggle, it is their own struggle with their environment and themselves. Juliana will see pictures in a catalogue of a cute turtleneck and say "That looks so nice, but I know I can't wear it." I found that being one step ahead helped. That is, I tried to find out about a place that was new and prepare her for what was coming. It will be loud, it will be busy, there will be flashing lights. What will we do. How do you want to handle it? She is old enough and bright enough to think about those things. She had a playdate with a little boy and he wanted to go an arcade--a tough place for a sensory kid. And I asked her if that was okay. She said "yes, I'll just play the quiet games--i'll stick to skeeball!!" And she had fun and the little boys mom didn't even notice that she had issues.

They can learn to deal with them, but they never go away. Read "The Out-of-Sync Child"--it is wonderful.

good luck,
claudia

When I read your description "the princess and the Pea" I burst out into tears because not only does my child seem to have big issues with noise, large spaces and brightly light rooms, but but she is so fantastically sensitive about her clothing and how it feels.

I now feel that I have some vocabulary and basis to explore my child's furhter needs. Thanks!

I am sorry but I do not think that we have answered J's Mom's question, and I am also interested in exactly the same question. Is there a relationship between the BPI and this SENSORY INTERGRATION DYSFUNCTION?

Much thanks,

In answer to the original question--there is no definative answer. A definative answer would require a study that directly correlates bpi and s.i.d. And there has not been one to date. It is a good idea, but it has not been done. The list of "anecdotal" issues that go along with bpi is very long: speech, hearing, balance and gait among them. I have not found a doctor who will tell you that the following things "could" occur when you have a bpi child even though their patients come back and tell them. If you tell your child's doctor that your child has A or B, they will say, "yes, I have heard of that before."

Do we need a huge study of the impact of bpi? yes.
Is it going to happen? probably not any time soon.

One of the biggest factors is that each injury is so different, that studying the "anecdotal" issues is very complicated. It is so much easier for them to know that c5 does X and therefore when c5 is ruptured we see Y.

Sorry we don't have more for you, though I think that the parents whose children suffer from sid have given a ton of info regarding sid and what to look for and where to go for help.

claudia

Hey, I forgot about the haircuts...that was always fun......now he is jsut the opposite, he had to have his haircut because the hair on the forehead...drives him crazy !!!1 Gayle

To the guest:
This is an old post that I had bumped up for another poster to read......Gayle

I just read over this thread again and I am so glad to see that parents are aware of the children's problems.

A bpi child had enough frustration coping with their daily functions and when possible it is good to remove the extra frustration's created by SID.

They will learn to cope with their frustrations and to live with them, we all do. Once these issues are understood and coping skills are supported they will learn to verbalize and cope and even understand that it is OK to have these feeling. They will also learn the having these issues does not mean anything is really wrong with them.

I am not saying to spoil the kids we MUST learn to live in the world and function. Learning to cope with our SID issues, I think, will lead to less stress and a better learning environment both at home and in school.

I knew I had quirks and dumb things bothered me and that was why my Mother said I was the "Princess and the Pea". Lucky for me that my husband thought they were cute... LOL... He is still amazed when I tell him how so many of the kids and other adults deal with the same quirks.

I feel everyone has issues with certain things and with bpi kids our issues are just added to our other problems and perhaps that is why they are so noticeable. We are way to immature to cope with so many issues while trying to grow and function.

I recently told a friend (48 year friend) about SID and all the things that bother me... Not one of my friends ever really notice and she was amazed. She has a non-bpi grandchild with SID and was worried. She said she is less upset because she realizes that I learned to cope with them. I still avoid certain things and the sound of the faucet water running for any length of time will drive me crazy. My kids always thought I was trying to save water... LOL...

Thanks for sharing now I understand why I was the worlds worst eater and would not chew and swallow as a child...
When I walk with anyone they must be on my non bpi side or I will run them off the sidewalk or even the walking track... My friends have learned that the hard way... LOL..

Kath (robpi/adult)