Injury Description, Date, extent, surgical intervention etc: LOBPI. I am 77 yrs old and never had a name for my injuries until 2004 when I found UBPN at age 66.
My injuries are: LOBPI on upper body and Cerebrael Palsy on the lower left extremities. The only intervention I've had is a tendon transplant from my left leg to my left foot to enable flexing t age 24 in 1962. Before that, my foot would freeze without notice on the side when wearing heels AND I always did wear them at work "to fit in" I also stuttered until around age 18-19...just outgrew it...no therapy for it. Also suffered from very very low self esteem; severe Depression and Anxiety attacks started at menopause. I stuffed emotions and over-compensated in every thing I did to "fit in" and be "invisible". My injuries were Never addressed or talked about until age 66. I am a late bloomer!!!!!
I welcome any and all questions about "My Journey". There is NO SUCH THING AS A DUMB QUESTION. Sharing helps to Heal. HUGS do too.
Jennifer,
I am glad to hear from you. Please remember there are no dumb questions on any UBPN Mesage Board. We all learn from each other. I am learning alot from you Moms, and Dads who post.
HUGS,
Carolyn J
LOBPI/69 & counting...
Hi Jennifer
Just keep reminding him that it doesn't matter what anyone thinks or says about him especially the little brats in school, All that matters is that he makes himself HAPPY. I was picked on in school because I was fat and my mother mad me wear long pig tails that the kids would pull. I even had two boys that would sit behind me in church and tie them to the pillars I couldn't wait to grow up and get away. By high school I had won Miss Teen NJ and was modeling (guess I showed them) Frankie still laughs till he cry's when he looks at my elementary school pics.Funny thing I still live in the same town as I grew up in and it makes me laugh when I run into the same girls that were mean to me and they stop to say hi they know my name and are very sweet but for the life of me I can't remember there names. I always tried to explain to frankie that some kids will be mean no matter what and thats there problem its because they are not happy with themselves that they have to make others feel bad. Mare
Jennifer,
I agree with everything that Mare just said. Those kids don't mean nothing to him and his true friends will always be his true friends.
After I graduated from High School I lost 100 pounds and when I went back for homecoming, there were all kinds of guys wanting to take me out on a date, you know how many I went on....NONE, they weren't worth it to me, I still had my real friends that supported me and helped me through my weight loss, I didn't need the one's that were only there for the outside appearance.
My son is nine and just recently told me he is having trouble with some kids making fun of his arm. Mind you I cannot figure out why because you can hardly tell and he does everything else that kids his age do !!! But like I told him, just think of it this way, if they are taling about you, they are leaving someone else alone. HE was good with that and even admitted he was glad that he had his real friends. Good Luck, I know it is hard !!! GAYLE
Gayle
If Brandon is being picked on in school I would mention it to the teacher so they can watch for it. This way she can catch them in the act and can do something about it without Brandon having to tell. Its easier if the teacher can bust the little brats in the act this way Brandon doesn't get called a tattle tale on top of everything else that is how I handled it and frankie never knew about it either and the teacher was more then happy to help. Also I talked with the principal and arranged to have at least one of frankies friends in his class every year so if he needed help he would feel comfortable asking his friend this was also put in his IEP then his 504 plan in JR High now in high school he isn't afraid to ask a pretty girl for help and is very out going. You can protect them without them knowing it and this keeps them confident, independant and happy without become a momma's boy. I would never not protect Frankie he just didn't have to know about it. Mare
Mare
I have talked to the teacher, but she has a kids will be kids attitude. That is fine in normal everyday circumstances, but it isn't in this case. Brandon is pretty out going, he doesn't need much help if any. I will talk to the pricipal, that may work, because this teacher just doesnt' get it. The odd part is that she has a friend that has met Brandon that has the same injury. Brandon was really happy to meet him, he is older and a teacher in the district the next town over.But oddly this is when the others seemed to notice Brandons arm more. He tells them, "What's wrong with your arm, they isn't anything wrong with mine" I just wish kids would be nice, I am an over protective momma and he has three over protective siblings, so these little brats better watch out !!!!! LOL GAYLE
Gayle
Does Brandon have an IEP or 504 plan these really help it spells everything out for the teacher like now Frankie gets extra time to change for gym and breaks during testing or long writing assignments in class due to over use of the right hand he also gets an extra set of books to keep at home so he doesn't have to carry them back and forth. As far as the teacher goes make an appointment with her and the principal and lay it on the line if that doesn't work change teachers I had to do that in the 3rd grade when the teacher told Frankie he couldn't eat his snack if he couldn't do his writing at the same time...she was always doing mean things to him and a few other boys with problems you could tell she was one of the mean kids growing up. At first the principal refused but I said I would get a lawyer and go to the school board and that Frankie was not returning to school until the change was done. He called me that night to say it was done and gave Frankie a great teacher who he loved and 3rd grade turned out to be the best year. Frankie used to tell the kids the doctor tried to rip his head off when he was born then he switched to saying it was broke,Now with all the scars he says he was attacked by a shark. He always hated questions about his arm and still does. I don't know about where your at but in NJ we have a zero tolerance program in the school systems for bullying and it can get you expelled from school if the principal won't help go to the school counselor maybe she can do something. Yes kids will be kids but it doesn't give one the right to hurt another and it is unacceptable that nothing is being done by the school. Mare
Injury Description, Date, extent, surgical intervention etc: LOBPI. I am 77 yrs old and never had a name for my injuries until 2004 when I found UBPN at age 66.
My injuries are: LOBPI on upper body and Cerebrael Palsy on the lower left extremities. The only intervention I've had is a tendon transplant from my left leg to my left foot to enable flexing t age 24 in 1962. Before that, my foot would freeze without notice on the side when wearing heels AND I always did wear them at work "to fit in" I also stuttered until around age 18-19...just outgrew it...no therapy for it. Also suffered from very very low self esteem; severe Depression and Anxiety attacks started at menopause. I stuffed emotions and over-compensated in every thing I did to "fit in" and be "invisible". My injuries were Never addressed or talked about until age 66. I am a late bloomer!!!!!
I welcome any and all questions about "My Journey". There is NO SUCH THING AS A DUMB QUESTION. Sharing helps to Heal. HUGS do too.
Gayle and Mare,
I realy feel it's best that your boys have a humorous comment back to all those kids who tease or say dumb stuff! Your 2 boys all ready have great "Chutspah"(sp.?!..sorry)
and just have to be encouraged to come up with and use their own "comback phrase"...it feels sooo good,believe me! Personally, I love Frankie's "attacked by a Shark" one!! It surely releases any angst/tension there present!
Mare,
Unfortunately, no I have not gotten Brandon a 504 or an IEP however, I am seriously thinking that I am going to need one. The last time we saw Dr. Nath, he asked Brandon about pain and Brandon told him that he had no pain until they fill his bookbag with heavy books and he carries it home. Out came the notepad and he gave us a prescription for a second set of books. They did cartwheels to get him his books, I havenever in my life seen them work so fast. They had to go to other schools in the district to get the books, but we got them. In thepast, I have not had a problem, they just did what I said. This year when I mentioned IEP/504 they told me I would have to find a local BPI sepcialist. Sure, that is easy to do. They throw road blocks up for me all the time. The book thing was amazing. I just keep reminding that he is so special to his family and that everyone loves him so much and usually that helps. I amd I try to remind him to use words, and not fist fight, being the youngest of four, he is one tough cookie. GAYLE
Injury Description, Date, extent, surgical intervention etc: LOBPI. I am 77 yrs old and never had a name for my injuries until 2004 when I found UBPN at age 66.
My injuries are: LOBPI on upper body and Cerebrael Palsy on the lower left extremities. The only intervention I've had is a tendon transplant from my left leg to my left foot to enable flexing t age 24 in 1962. Before that, my foot would freeze without notice on the side when wearing heels AND I always did wear them at work "to fit in" I also stuttered until around age 18-19...just outgrew it...no therapy for it. Also suffered from very very low self esteem; severe Depression and Anxiety attacks started at menopause. I stuffed emotions and over-compensated in every thing I did to "fit in" and be "invisible". My injuries were Never addressed or talked about until age 66. I am a late bloomer!!!!!
I welcome any and all questions about "My Journey". There is NO SUCH THING AS A DUMB QUESTION. Sharing helps to Heal. HUGS do too.
You don't need a bpi anything tell them you want him evaluated by a child study team and get a note from your pedestrian saying he has BPI and has special needs even if he doesn't right now he might later and then they won't give it to him. The 504 plan is by the state not school that is the one you really want and they can't take it away in 1 or 2 yrs like the IEP. Frankie was even offered OT through his 504 plan after his last surgery and has a whole list of things they have to provide for him. As far as the back pack get one that wheels along I know some schools don't allow them but in Brandon's case they have to. Don't allow him to carry a back pack or any kind of weight on his affected side. If they give you any further problems tell them you are getting a lawyer also get the back issues of Outreach it gives info on what the schools need to know about BPI kids I saw it was posted not to long ago. I took the whole darn mag with me to the meeting. The school OT/PT thought BPI was Cerebral Palsy they really have no clue so you have to fill them in also call the Board of Education to request a case manager this way you have someone to help you deal with the teacher and principal. Also I know in NJ if they can't provide what your special needs child needs they have to pay for you to send him to a private school. From kindergarden till 2nd grade Frankie had a paraprofessional with him all day just for him to help him do everything from pull up his pants to carry his lunch tray and supervise him on the playground. Frankie had no use or feeling in his arm so if he fell the arm or wrist could break and he wouldn't know it. His forearm has broke twice and his wrist 8 times while wearing a protective splint and that was when he was being watched so I knew to take him to the ortho right away see Frankies arm doesn't swell or bruise due to very poor circulation some kids have this problem others don't it depends on the injury. Also on the OBPIA forum there is a man named Ken who I think is a lawyer maybe he can help you also. Kepp me posted Mare
It surely releases any angst/tension there present!