United Brachial Plexus Network, Inc.

AMy don't feel bad, I always thought that I had just spoiled my son too much, then I heard from the adult BPI's.....My son will not wear a robe....he hates them. he would just rather run around in his underwear. He is seven now, so not so much around people, but if he could get away with never anything but underwear !Gayle

Amy
It is hard for a child to explain what is going on because they don't fully understand what's going on.
My mother use to tell me I was like the Princess in the story "The Princess and the Pea".

It's not that your not sensitive.
I think it must be very hard to understand why these seemly trivial things can send us up a wall.
We don't really understand it when we are young and don't know how to fully verbalize it.

It gets better as we mature and learn to cope and compensate past some of this stuff.
I am sure it will be easier for both of you now that you know what is causing the problem.

I am married 40 years and my husband always thought my quirks were cute and funny... LOL..

He makes sure he sits to my right this way no one will startle me.
I still have to sit at a table with my back to a wall.
I can't stand anyone to come up behind me when I am eating...

Kath (robpi/adult)

Bumping to the top for parents asking questions about SID. This post is so amazing but keeps falling to the way bottom of the threads...just trying to keep it up at the top. Gayle

Gayle,
I think this should be permanently at the top also!Everyone mistakes SID forADD/ADHD because it's cheaper to treat...with a pill & there is nothing I detest more than "quick fixes"....
Hugs,
Carolyn J
Adult LOBPI

Gayle,
It's my turn to "bump this up" today...busy weekend...I hope some more Mom's read this, this week...
Hugs,
Carolyn J
Adult LOBPI

My son Jack is ten....he was always so confusing to me. He always has food and fiflth on his face and clothes in seconds after putting them on. He runs under desks or hides when I call his name(getting better with age). He'd struggle with his clothes sometimes hours and refuse to wear underwear, most socks, jeans, etc. He immediately undresses into loose fitting boxes when he gets home and as an infant only wore a diaper no matter what season. His bathroom rituals are strange. He spends a very long time and needs to be undressed when on the toilet in order to be comfortable. He has a very hard time going from one activity to another, making him perpetually late and always looses at least one thing during a transfer. He also can't enjoy spontaneous fun like other children...especially winter activities like sleigh riding that require several differnt layers. When he was very young I did not understand why it was so difficult and why my toddler screamed when dressing him, washing him, and the worst brushing his hair or clipping his nails but as he gets older I naturally made adaptions and he has improved. Going to a friends house, school, baseball practice, or a party now requires alot more prep time than conceivable for most people but it happens now and he is able to have a more full life. Down time is a major neccesity for Jack to function. Relaxing is something he needs to look forward to ant the end of his day and week. Although it is never easy, it gets easier....and you learn to pick your battles. I have never required him to wear underwear but now on his own he puts it on and he is wearing jeans now and not only sweats and tshirts. He even gets himself on the bus each morning and requires little help...an imposibility just last year. There is hope...and change...each day.

Bumping up to the top for the TEMPER TANTRUM question !! I think this one needs to be officially bumped....it is such a much needed thread !! Gayle

Would someone be able to explain to me what Alexis's arm FEELS like? I often wonder, but she is not old enough to give me an explanation. She acts as if it hurts sometime when I touch it, but not all the time, so I'm careful not to grab her or pull (like when putting on a shirt). Does she have pain, pins and needles, no feeling? The doctor said his tests are inconclusive, but he doesn't have a BPI, so I think one of you can help more in that department (We love and trust her doctor very much - I'm not conmplaining about him!)

I am the mom of a child with a ROBPI but he is seven now and often complains of his arm falling asleep. PErhaps the Pins and Needles theory. I don't think that he has "REAL" pain yet and if he does, he doesn't know that "PAIN" is what it is !!!! He does say that his arm gets tired.....quite often....maybe an adult can help you more with this question ! Gayle

Bump !!!! Just for the purpose of keeping this important thread near the top....for other concerned parents to see. Gayle