Advice to a mom of an obpi child?

This board is for adults and teens to discuss issues relating to BPI since birth (OBPI).
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mamaofsix
Posts: 214
Joined: Sun May 11, 2008 5:20 pm
Injury Description, Date, extent, surgical intervention etc: Second son, Cameron, left obstetric brachial plexus injury in 2005.
Primary never graft surgery at 3 months old at St. Louis Children's Hospital
and several rounds of Botox injections.

Advice to a mom of an obpi child?

Post by mamaofsix »

Hello..

I went through and read many of the posts posted in this board and I have a question. What advice would you give to a parent of a child with obpi? Something you wish your parents would have done, something they did do that meant the world, just any advice.

As much as I would like to take his injury away, I can't, but I am determined to do the best I can with what we were blessed with.
Judy-T
Posts: 557
Joined: Fri Nov 02, 2001 11:59 am
Injury Description, Date, extent, surgical intervention etc: Right arm OBPI One surgery at age 40 Ulnar nerve retransposition
Location: Florida

Re: Advice to a mom of an obpi child?

Post by Judy-T »

My advice to you would be "Let your child try anything that they want" We know our limits,just let them be kids. Do not over protect them. If they want to play baseball, let them try. This goes for any sport or activity. You might see your child struggle ,but they are doing and trying things . My Mom would let me play any sport, I was not the greatest,but I had fun trying. I think that this made me a more stronger willed person.Please just let your kids be kids.
Judy
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: Advice to a mom of an obpi child?

Post by Kath »

I agree with Judy. I was allowed to try everything within reason. I tried climb some trees that really beat me up so they became off limits without adult supervision. I was treated like any other normal child and thought I could do anything I put my mind too, because my Mom said I could. I was never allowed to say "I can't"... the usual response was always the same " can't means you won't." I think my Mom enabled me and never disabled me she gave me wings.

I would encourage you to be honest with your child. I was told I was injured when I was born and the doctor pressed too hard. Not once did I ever detect any anger towards the doctor that delivered me nor did my mother show her pain to me. My Mom never uttered the delivering doctors name( I looked it up 9 years ago on my birth certificate). My family constantly praised the doctors at New York Hospital who worked with them, advised them and made my brace. I was quite old when I discovered how much my injury hurt my parents emotionally. I think, when parents are angry at the doctors, the children perceive this unhappiness as their fault.

Letting kids be kids is so very important. We should not be made to feel like victims. Pampering and making a bpi child "special" will not help them to fit into society. Every child is special and if bpi children are pampered they will not fit with other children. It will make their lives so much harder.

Kath robpi/adult
Kath robpi/adult

Kathleen Mallozzi
Carolyn J
Posts: 3424
Joined: Tue Apr 06, 2004 1:22 pm
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.
Location: Tacoma WA
Contact:

Re: Advice to a mom of an obpi child?

Post by Carolyn J »

I would only add this. Please include your child in all medical apointments'discussions. Even if your child cannot understand all that is said,he/she will know that it's ok to talk about his/her injuries. When he/she is old enough, please allow him/her's opinion to count.

Carolyn J
LOBPI
Carolyn J
Adult LOBPI
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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: Advice to a mom of an obpi child?

Post by marieke »

I agree with all the above. I was allowed to try anything I wanted. Climbed the monkey bars (I was allowed as per MD said I could), I did Ballet, I competed in figure skating, played clarinet in the school band, was a prefect for the school... all this made me stronger physically and emotionally/psychologically.

My parents were honest about how I was injured and I was always involved in medical appointments, especially as a pre-teen/teenager.

The only thing I wish my parents had done was make my elementary school gym teacher understand what I could/could not do (or could not do the same way).

Always make sure her teachers/coaches know that she may have limitations or that he/she may do things a different way to make it work for him/her.

Marieke 32, LOBPI
Marieke Dufresne RN
34, LOBPI
http://nurse-to-be08.blogspot.com
TinaT
Posts: 155
Joined: Sun Feb 24, 2008 3:21 am

Re: Advice to a mom of an obpi child?

Post by TinaT »

I also agree with everything said here.

Always let your child know that you Love them AS THEY ARE.

Marieke made a very valid point ! Always make sure her teachers/coaches know that she may have limitations or that he/she may do things a different way to make it work for him/her. This is SO important in allowing your child to try everything. Even though we do it differently, we still want to try to do it ALL....

I was never told I COULDN'T do something. My parents left me to figure out what I could and couldn't do, and HOW to do the things I could !

Loving unconditionally is really ALL that matters.......

Tina BiOBPI
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