Emotionally damaged OBPI adult

This board is for adults and teens to discuss issues relating to BPI since birth (OBPI).
Kath
Posts: 3242
Joined: Mon Nov 18, 2002 4:11 pm
Injury Description, Date, extent, surgical intervention etc: I am ROBPI, global injury, Horner's Syndrome. No surgery but PT started at 2 weeks old under the direction of New York Hospital. I wore a brace 24/7 for the first 11 months of my life. I've never let my injury be used as an excuse not to do something. I've approach all things, in life, as a challenge. I approach anything new wondering if I can do it. I tried so many things I might never have tried, if I were not obpi. Being OBPI has made me strong, creative, more determined and persistent. I believe that being obpi has given me a very strong sense of humor and compassion for others.
Location: New York

Re: Emotionally damaged OBPI adult

Post by Kath »

Mickey
I wrote something many years ago about what I lost and what I gained from being OBPI.
It was very healing for me to write it and I know other obpi feel that some of the things I said applied to them.
E-mail me and I will send it to you if you would like to read it.

KathM (robpi/adult)
Kath robpi/adult

Kathleen Mallozzi
User avatar
marieke
Posts: 1627
Joined: Fri Apr 01, 2005 6:00 pm
Injury Description, Date, extent, surgical intervention etc: LOBPI
no external rotation against gravity, can only go to 90 degree fwd flexion, no hand-to-mouth
1 surgery at age 14 (latissimus dorsi transfer). In 2004, at age 28 I was struck with Transverse Myelitis which paralyzed me from the chest down. I recovered movement to my right leg, but need a KAFO to walk on my left leg. I became an RN in 2008.
Location: Montreal, Qc, Canada
Contact:

Re: Emotionally damaged OBPI adult

Post by marieke »

I hated gym class too..rope climb, blech! Most girls in the class cound't do it.. and me with my arm, forget it! I hate team sports (anythin with a ball!). I loved individual sports, but you hardly get that in phys ed classes at school!
I did Ballet and Figure skating (was good too) and loved those. My teacher/coach understood the problem and figured out ways around it. My gym teachers never could figure out/understand why I could dance or skate so well, yet HATE gym! They never understood the issues at hand. Didn't matter how much I explained/my parents explained... I was thrilled when I had surgery in grade 9 and didn't have to take gym anymore... my PT wrote me a note for the next 3 yrs excusing me from phys ed class! I was doing so my PT anyway and started skating/ballet again in grade 10 (end of the yr) and 11 in any case. So I only did phys ed again in CEGEP (we have until gr. 11 in Quebec, then do 2 yrs pre-university, then 3 yrs university for an undergrad... only in Qc, not the rest of Canada). Let me tell you, I was prepared to explain things to tecahers I had in CEGEP. I refused to get crappy grades b/c of something I was physically unable to do! Sorry for the ramble!
Marieke Dufresne RN
34, LOBPI
http://nurse-to-be08.blogspot.com
admin
Site Admin
Posts: 19873
Joined: Mon Nov 16, 2009 9:59 pm

Re: Emotionally damaged OBPI adult

Post by admin »

My son is only 7 and he lives for PE. He cannot do everything perfect, but the teacher loves the enthusiasm(SP?) and always picks him to be the team captain. She loves the way he does him jumping jacks and is now getting into one handed cartwheels and PUSH UPS !!! gayle
Kath
Posts: 3242
Joined: Mon Nov 18, 2002 4:11 pm
Injury Description, Date, extent, surgical intervention etc: I am ROBPI, global injury, Horner's Syndrome. No surgery but PT started at 2 weeks old under the direction of New York Hospital. I wore a brace 24/7 for the first 11 months of my life. I've never let my injury be used as an excuse not to do something. I've approach all things, in life, as a challenge. I approach anything new wondering if I can do it. I tried so many things I might never have tried, if I were not obpi. Being OBPI has made me strong, creative, more determined and persistent. I believe that being obpi has given me a very strong sense of humor and compassion for others.
Location: New York

Re: Emotionally damaged OBPI adult

Post by Kath »

At 7 I loved those things too but I think people here are really talking about High School PE and our experience with PE teachers who did not understand our limitations. Our parents had much less control and freedom in the schools to protect us from those who would discriminate again people with disabilities.

I am so happy Gayle to hear that PE is easier for kids today then it was for us.

Kath (adult/robpi)
Kath robpi/adult

Kathleen Mallozzi
User avatar
marieke
Posts: 1627
Joined: Fri Apr 01, 2005 6:00 pm
Injury Description, Date, extent, surgical intervention etc: LOBPI
no external rotation against gravity, can only go to 90 degree fwd flexion, no hand-to-mouth
1 surgery at age 14 (latissimus dorsi transfer). In 2004, at age 28 I was struck with Transverse Myelitis which paralyzed me from the chest down. I recovered movement to my right leg, but need a KAFO to walk on my left leg. I became an RN in 2008.
Location: Montreal, Qc, Canada
Contact:

Re: Emotionally damaged OBPI adult

Post by marieke »

Yes, I did mean High School, though my PE teacher in grade school didn't get it either when it came to "relaxation" time. She wouls have us lie on the floor on our backs... hard floor, winged scapula... does not mix!
But High School PE was tough, plus I went to a public school where the sexes were mixed in PE, so boys and girls in the same class with team sports... well let's just say that boys never wanted to pass the ball to the girls and girls can be "catty" when they see any differences. I had a few good friends who would stick up for me, but they couldn't always come to my aid in PE!
I know now, that the high school I went to seperates the boys and girls in grade 10 and 11 and that they offer dance and mouvement now for those who want it! Things change, which is nice to see.
Marieke
Marieke Dufresne RN
34, LOBPI
http://nurse-to-be08.blogspot.com
User avatar
brandonsmom
Posts: 1401
Joined: Mon Nov 22, 2004 4:43 pm

Re: Emotionally damaged OBPI adult

Post by brandonsmom »

I think that PE is different than it was years ago because there are more disabled kids in the schools. Years ago I think they hid the kids with Cerebral Palsy and the such. Now they are right in there along with the rest. When I was in eighth grade I woke up one moring and couldn't walk. I went to a private school so a note to the teacher would do, however I did not walk for 7 months. I had an infection that settled in my knee and no one, not even the orthopedic surgeon for the CHICAGO BEARS could figure it out.....anyway......they would not give me top of my class honors because even though I had a straight 4.0 plus, I never participated in gym. I had an excuse but they never gave me those honors......I think that the school system has gotten a little better with children with disabilities.....even though sometimes, I think that they make us parents work too hard for that little bit !!!! GAYLE
User avatar
marieke
Posts: 1627
Joined: Fri Apr 01, 2005 6:00 pm
Injury Description, Date, extent, surgical intervention etc: LOBPI
no external rotation against gravity, can only go to 90 degree fwd flexion, no hand-to-mouth
1 surgery at age 14 (latissimus dorsi transfer). In 2004, at age 28 I was struck with Transverse Myelitis which paralyzed me from the chest down. I recovered movement to my right leg, but need a KAFO to walk on my left leg. I became an RN in 2008.
Location: Montreal, Qc, Canada
Contact:

Re: Emotionally damaged OBPI adult

Post by marieke »

Gayle, I hear ya! I nearly lost out on 2 grdauation scholarships b/c I did not do PE or MRE in my final year of high school, despite straight A's. I was nominated for 2 monetary awards and one book prize, and apparently a few teachers (who didn't even teach ME!) argued that I should not get them b/c I did not have a "full" course load... both PE and MRE were half credits, which meant that in a 7 day scedule (yes, our school worked on a 7 days cycle in a 5 day week... made it hard to keep track of which day was which after a break) I had 1 period off 6 days out of 7. Didn't matter to those few teachers that during my period off I tutored other kids or did my own work! In the end I got all three prizes, but I was lucky that I had some strong support from MY teachers, those who actually taught me day to day.
Marieke
Marieke Dufresne RN
34, LOBPI
http://nurse-to-be08.blogspot.com
Kath
Posts: 3242
Joined: Mon Nov 18, 2002 4:11 pm
Injury Description, Date, extent, surgical intervention etc: I am ROBPI, global injury, Horner's Syndrome. No surgery but PT started at 2 weeks old under the direction of New York Hospital. I wore a brace 24/7 for the first 11 months of my life. I've never let my injury be used as an excuse not to do something. I've approach all things, in life, as a challenge. I approach anything new wondering if I can do it. I tried so many things I might never have tried, if I were not obpi. Being OBPI has made me strong, creative, more determined and persistent. I believe that being obpi has given me a very strong sense of humor and compassion for others.
Location: New York

Re: Emotionally damaged OBPI adult

Post by Kath »

Gayle & Marieke

When I went to school we did not have PE until 5th grade.
I had art and music instead and that was fine.
5th through 8th Grade was Ballroom Dancing and I got and award for that.
HS GYM was a horror we had to wear one piece gym uniform (hard for obpi to get on).
I had to button it quickly and lost points for slow dressing.
It was the worst experience.
They also did not allow any physically disabled children in regular schools.
I was the only one that was different.
They made no allowance for my difference.
I had the same teacher for 4 years.
She made my life miserable and I was very athletic and took dancing, it made no difference to her.
I did not put my hand up over my head nor was my arm straight during exercise.
UGH... thinking about her makes me sick to this day. I am so happy they can't do this anymore to any child.
Kath (robpi/adult)
Kath robpi/adult

Kathleen Mallozzi
User avatar
brandonsmom
Posts: 1401
Joined: Mon Nov 22, 2004 4:43 pm

Re: Emotionally damaged OBPI adult

Post by brandonsmom »

Kath,
I think that is what I was trying to say, that disabled childern were kept in different schools or home schooled. You guys weren't protected like my child is today. I would dare a gym teacher to treat my child like you guys were treated. It wouldn't be pretty and I would have an attorney so fast, they would see their heads spin. My friend has a child with SEVERE Cerebral Palsy and she goes to regular school although she cannot even walk....she is almost 6 now. Years ago that would have never happened. I think the Americans with Disabilities act is a wonderful thing. I think things have gotten better....I would hope this is 2006. I am so sorry for all that you guys had to go through, but appreciate all the help you guys are to parents like myself....who wouldn't last a day without you guys !!!
GAYLE
User avatar
marieke
Posts: 1627
Joined: Fri Apr 01, 2005 6:00 pm
Injury Description, Date, extent, surgical intervention etc: LOBPI
no external rotation against gravity, can only go to 90 degree fwd flexion, no hand-to-mouth
1 surgery at age 14 (latissimus dorsi transfer). In 2004, at age 28 I was struck with Transverse Myelitis which paralyzed me from the chest down. I recovered movement to my right leg, but need a KAFO to walk on my left leg. I became an RN in 2008.
Location: Montreal, Qc, Canada
Contact:

Re: Emotionally damaged OBPI adult

Post by marieke »

I am glad to be of help! And yes, I remember when I was in grade school.. I think there may have been one kid with a real obvious disability and in HS there were a few, we had an an elevator built when I was in grade 8 or 9...
When I got sick (nearly 2 yrs ago) and ended up in a wheelchair, a few parents gave me very odd looks (I taught pre-k) at the strat of the new yr when I went back. That stopped when a new parent who was alos in a wheelchair rolled into the room... the stares stopped then and there! You don't hear much about disabled teachers either, but they are there!
And now, I walk (with a cane and a leg brace) and am in nursing school.. don't hear of many disabled nurses either, but times are changing!
Marieke
Marieke Dufresne RN
34, LOBPI
http://nurse-to-be08.blogspot.com
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