United Brachial Plexus Network, Inc.

I was reading again and see where many of the children act out in school and was wondering if any just shut down like I did?

I was so quiet in school and for those who know me I am outgoing.
I was so well behaved in school I always had A in conduct and Z ( well really it was a D) in effort because I would shut down in a loud classroom.

It reminds me of my granddaughter,she was a 27 week baby.
As an infant, if the room got loud or too many people were around her, she would just shut down and go to sleep due to sensory overload...
I wonder how many bpi children suffer from SID but because they are quiet and withdraw in school are labeled underachievers like I was...
My mother was always told that I was not working up to anywhere near my potential.

Kath (robpi/adult)

Kath:
Juliana used to do this. She would hide in the coat closet during free play because there was too much going on.

She has been moved in her classroom a number of times (when others weren't), because her teacher (an incredible woman) recognizes that she has to be with quiet kids. Essentially, she can't walk and chew gum at the same time. But she is very bright and reads and does math well above grade level. Our problem still remains--focusing in a noisy and busy classroom.

The kids (and adults) do learn coping mechanisms. Even if they are avoidance mechanisms. Like going to the mall at a less crowded time (or ordering on line!). I have an issue with being bumped into--makes me nuts! And I have a very sensitive nose. So I went into baking--things smelled good in the bakery!

I maintain that parents need to educate their schools and classroom teachers so that they kids can be given the tools to learn the coping mechanisms. Yelling or punishing does not help an sid kid.

Kath, I'm so glad Ralph thought your quirks were cute...we actually find some of Juliana (and Isabel's) issues kind of fun. How many kids can say that their siblings all cheer them on at the dentist??

claudia

Kath,
~And I thought I was the only one that "shut down" in school!..& yes, I also hid in the Coat Room, Claudia. BTW, I can't type "LOL"..I wish I could, but these memorfies that just POP UP still break my scabs of old wounds...BUT... IT will NOT stop me from sharing 'cause I believe that we Adult OBPI-ers have the information on how Sensory Intergration reeked havoc on our lives...MY life, I can only speak to really. SI did make school sooo much more difficult especially when I had absolutely NO understanding or support at home.
These subjects is no longer a "Downer" when I share my personal experiences about it! These Message Boards really have Healing Powers attached,folks. Thanks you again, Nancy! Are you listening? what you have done for all of us in the UBPN Family!!
(((HUGS))) all around,
Carolyn J
Adult LOBPI
age 67 & proud of it!

Once again, I want to thank Kath and Carolyn for their input...you have no idea, how much your experiences...although sometimes it hurts to relive it help our kids today...where would we be without you Gayle mom of Brandon ROBPI !

I was reading some of this to my husband Tim and said, 'who does this sound like?' and he said 'you'. I honestly never really realized that this was the explanation for not liking loud noises, crowds, tags on clothes, overhead lights, coats, seatbelts, turtlenecks, etc. I just assumed they were my own little idiosyncracies. It explains so much.

So ... I became the boss (not talking about UBPN here, ha ha) at my position at the university (where I was a full professor and director of a department in the library). I think the drive to achieve that was the need to be in control of my environment and create a space where I could be in charge. It all makes sense when put into this context.

And thanks, Carolyn, for your kind words, but thanks go to UBPN Board of Directors and esp. to Cathy Kanter, who had the vision to create this organization.

Nancy Birk
UBPN President

Nancy
I guess that is why Ralph often thinks I am a control freak. I have to pick the table in the restaurant and won't sit with my back to open space... LOL...
Maybe that is why I choose to telecommute by doing computer work at home rather than go back to an office. I was in total control of my office and space... LOL...

Claudia talk about sensitive smell... ugh mine is so sensitive. I can't sit at a table after eating because the smell of food makes me gag. Everything use to make me nauseous. I am so sensitive to smell and I drive my family crazy. I can tell what they have eaten of course if it's chocolate it forces them to share... LOL..

We have so much to learn about this subject and I agree there will never be a study but at least we can help each other.

I have been able to compare myself to other adult obpi and learned so much from them... As Carolyn said it is healing for some. I find it interesting and now understand myself better. I never realized what a major issue some of these things were to me. I assumed all kids had these feelings until I raised my own children. We need to share this information with parents because doctors do not understand and the kids need validation and as they mature they will understand them selves better.

Kath (adult/obpi)

Gayle,
To help all of our BPI Family of Children and Moms & Dads to understand their "Treasures" better...That's why I share, no matter what. You really don't "get" something fully until you pass it on....Off my Soapbox now!..
Hugs to All,
Carolyn J

My daughter, Alyssa 10 yrs old with LOBPI, has many of the issues discussed here. The socks, tags, will wear only certain clothes, she is easily agitated my sounds. If I talk to her she always wants to hold her ears and says I am too loud even though it's my normal tone of voice. She is having a lot of issues with her behavior at school right now too. When in a group, when I watch , she always stands out with her behavior. She takes things so much more to heart than others. If someone else is chosen to do. She doesnt do well when we brush her hair and just overall is easily irrtated. While I brush her hair, she complains it hurts her feet to stand in one spot. My mom claims she is a normal kids, but I have 2 others children who do not do these things to such extremes. I want to talk to her OT next week to see if they can re-evaulate her. We were told before that she may have some sensory issues but they have just seemed to escalate lately. I am just not sure what else to expect or how I can help her.

Jeanne

It is hard to be different when we are young.
We have so many sensory issues that it's hard to tell where one begins and one ends.

I use to tell my husband that our children were so much more relaxed than I was as a child.
I never realized it was because of my arm.
I honestly thought all my other problems were unrelated to my arm.
I assumed I must be making their lives easier or smugly assumed I was doing a better job of parenting.
I had no idea they were just normal kids... LOL...
I assumed I had done something right and they were more comfortable for it... LOL...

As Alyssa begins to grow and mature she will have issues and will (with your help) find her way around some of the more annoying ones.
I avoid things that drive me crazy now.
In large crowds I must get up and down and walk around.
I still don't like to sit still for to long.
Now that you are aware of so many of her issues you can begin to help her.
You can also ease your mind and stop worrying about spoiling her.
Now you know the reason her behavior is different from your other children.
Somethings she will just have to have her own way on to avoid unnecessary frustrations.
She has enough frustration trying to function and learn new tasks.
BPI children are challenged beyond the level of their maturity to cope with ordinary tasks...

Her seat in the classroom is very important because it will mean the difference between being able to focus or constantly being on sensory overload.

If I am overtired I get restless leg and then I can't settle down and fall asleep.
I think one other adult/obpi complained of restless leg...
I use to shake my leg when I was sitting down and still have to catch myself to keep from doing it when I am tired.
I don't think it is ever to late to work on sensory issues and perhaps your OT will be able to help her.
Sometimes all of these issues are just as annoying to us as they are to our families.
Sadly we (OBPI children) often do not have the words to explain our feelings or understand of how to control and avoid some of these issues.

My kids will still tease me about being picky because they really don't get it!
Besides they have lived with it all their lives and it gives them something to tease me about... LOL..

Even my closest friends never really noticed until I started talking about it.
I learned to cope so well with these issues.
They still drive me crazy but I avoid things that I cannot control.
Kath ( adult/obpi)

Jeanne,
My son is 7 1/2 and we just started noticing the sensory issues, because all along we thought that I had just spoiled him rotten.....it was this year is school that has been the eye opener. He cannot sit anywhere but in the back two corners....where no one is behind him and there are only children to him front and one side. He CANNOT sit by the teachers desk(too many distractions) He cannot have anything hanging over his head....especially if it is bright colored. He used to fight me about socks....finally found some he can wear and I don't even try other kinds....not worth the frustration. Clothes...that is another story. He must wear t-shirts under everything........but don't forget to cut the tags or buy tagless.....The tags go with the price tags now, just saves trouble. (FAMILY will even cut the tags if they are sure that it will fit.....because when he first tries it if it has a tag, it will go in his closet and be there forever) Jeans...oh the jeans problem.....we go to the thrift store and buy jeans because otherwise I have to wash then about 15 times before he will even attempt to wear them. I have five brand new pair of pants here that he will not wear because they are DICKIES and they are starched beyond belief....he told me that it bothers him just to look at them. These are some issues and how we here at home work with them. It is easier once you figure out what makes them CRAZY!!!! When the house gets too loud...I have four kids....he lets us know and we either quiet down or he goes in his own little space to relax. If he closes the door.....leave it that way he will open it when he is ready to be social again.....it just means he is overloaded.
A little humor here....don't get mad at me, but right after his poor teacher was having these problems and we finally figured out what was going on, I was a KOHLS and founf a t-shirt that said:" May I be excused from class.....my brain is full!" She laughed so hard she had to leave the classroom and call me. She loved it and agreed that was Brandon, not all the time, but when he's done he is done.....!!!
Have a great day
Gayle