United Brachial Plexus Network, Inc.

Just wanted to let new parents now of this.... Thomas is 8 always hated tags in his shirts, things on his lobpi hand, people walking or sitting near his left side, load noises, and he lines everything up... he always has and don;t move any thing around he hates it every thing has a place. Colder weather and rainy days make his arm ache as does having a fever. So many little things you learn is normal for them.

Carron,
I have BUMPED UP the topic thread of "Sensory Integration Dysfunction", the term the condition/issue alot of us with OBPI's have... adults as well as children, have.

Carolyn J
LOBPI/adult age 71

Logan is 5 with a ROBPI and he has always seemed overly sensitive to many things. He hates tags on his shirts, seams on socks, and clothes and shoes that are too tight or restrictive. He hates things that are too hot or too cold. He also chews holes in his shirt sleeves on his right arm (right at the cuff). I'm thinking it all must be related. There's a good post on sensory issues somewhere on the site. I know it gets bumped up occasionally.

Crystal

Brandon is 11, same thing....use to think he was just spoiled since he was the younngest of four, but then I "MET" Kath and wow that changed my perspective....SENSORY from the word "GO"
Gayle mom to BRANDON 11 1/2

I'm so glad we have the post on Sensory Issues.

They don't go away but we learn how to manage them better and also how to hide them a bit. Most people don't understand them. OBPI kids we seem to have sensory integration due to our physical injury. Our sympathetic nervous system just is not wired right once we are injured.

I still have melt downs once in awhile. This past weekend we were getting ready to go out to dinner in NYC. So I took out the suit and blouse I planned to wear and put it on... I took the blouse off and proceeded to try on 4 more and all of them were uncomfortable. I was getting so annoyed because none of them were new! It was just one of those nights when everything annoyed me. My husband came into the room as I was stamping my foot out of frustration! The big difference now, is that I know that this happens from time to time and don't get upset with myself. When I was young I just steamed hoping no one would notice. I took a deep breath and found a very loose blouse (and the tags are cut out) and put it on. I was fine for the rest of the night... It's like a flare up... does not happen often because I wear all my clothing loose and know where to sit in a restaurant and have my husband sit to my right. I have a few friends who know that they are not suppose to grab my right arm when they talk to me... But they forget... I just give them the look ... LOL... now and they stop touching my arm. Or I have certain friends sit only on my left side because it does not bother me on that side.

BPI kids will force you off the road or sidewalk if you walk on their bpi side. I think it due to a lack of body boundary. I know if someone makes the mistake of walking on my right side... they are off the sidewalk or walking track before I know it! BPI kids often can't stand to sit in the middle in the car! They are not being pains... it's because their arms are uncomfortable.

I still HATE overhead lights and know a few adult/obpi that have the same problem. We all have Horner's Syndrome so perhaps that has something to do with it.

I don't like people to touch my arm without warning me or when they talk to me. My brain gets the wrong message. My brain thinks I'm being hurt/attacked. Even gentle touch can cause a child/adult to have an angry reaction. We can't tell the difference between gentle touch and an attack... Thanks to Dr. Belzberg for explaining this to the adults at Camp one year.

OK. This is long enough because my response on the Sensory Post is long enough.

I just wanted to reassure parents that we learn to work around it as we mature. Don't expect it from a child, as children we have enough challenges that are beyond our maturity to cope with.

Kath robpi/adult

I have the Sidewalk thing going too because of balance problems in addition to the reason Kath Gives.
I DO THINK your posts on this Topic ARE INVALUABLE to all of us, Kath. I hope I can remember where to find this topic posts in the future because every 3-6 months someone new to UBPN asks these questions.

HUGS all around,
Carolyn J
LOBPI adult/71


Message was edited by: Carolyn J

Kath...
So that is the reason Brandon refuses to sit anywhere but behind mommy? I got it now. He used the lame excuse that he wants to be by me, but now I know the reason !!! Thanks!!
GAYLE

I have often said that Maia's "other" stuff way overpowered "the arm". Sensory stuff is the icing on the cake - it brings new meaning to what life is. Add a little OCD, panic disorder and more...it's quite a cocktail. (I know they all cross boundaries) It's hard on me, the mom, to figure out how she gets to certain places in her mind....

I actually prefer to have someone walk on my BPI side (left) because I often would end up falling into the street. This way it keeps me safe
I have a good friend who used to always make me walk on the "inside" so that I would not end up in front of a car! LOL

Marieke 34, LOBPI

Marieke that's a true friend!

I slowly push them off the sidewalk into the cars...LOL.

I also don't like it when someone touches me on the arm even gently. I prefer no one on that side except my husband and one friend who has an obpi grandchild.