Hi I have a 14 week son with a ROBPI--it's severe we're told affecting upper and lower roots.
I know he's so young for me to be concentrating on this but... I just want to be raising him to be strong and confident like any parent wants every child to be... I really am loosing sleep...
I was wondering what your parents did/are doing that really helped/are helping you? And what things would you'd have done differently?
Advise from teen/adult OBPI please
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myhumanrevolution
- Posts: 62
- Joined: Mon May 24, 2004 5:23 pm
- Injury Description, Date, extent, surgical intervention etc: Son with ROBPI Global
- Contact:
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Arc76
- Posts: 13
- Joined: Tue Jul 13, 2004 6:25 pm
- Injury Description, Date, extent, surgical intervention etc: LOBPI, winging scapula, elbow contracture, limited ROM shoulder/arm/hand
3 surgeries to date Hand/wrist @ ages 12/13 and Mod Quad-shoulder @ age 29 - Location: New Jersey
- Contact:
Re: Advise from teen/adult OBPI please
Hi,
I am 28yrs old, i have a LOBPI, My parents, Father especially were both extremely supportive in my childhood years. as a parent though you have to make sure you are not too over protective. Growing up i heard a lot of, "help him he can't do it" because of my injury. Hearing that constantly gave me a complex. as result i find myself constantly trying to prove myself, to prove that i can do anything that anyone else without a problem can do, sometimes even better. so my advice would be, encourage your son to do his best, be supportive but at the same time let him find his limits, you would be surprised at how many things he can and will be able to do.... I could write a book about my childhood. Hope this helps a little. Feel free to e-mail me with any questions. Arc76@snip.net
I am 28yrs old, i have a LOBPI, My parents, Father especially were both extremely supportive in my childhood years. as a parent though you have to make sure you are not too over protective. Growing up i heard a lot of, "help him he can't do it" because of my injury. Hearing that constantly gave me a complex. as result i find myself constantly trying to prove myself, to prove that i can do anything that anyone else without a problem can do, sometimes even better. so my advice would be, encourage your son to do his best, be supportive but at the same time let him find his limits, you would be surprised at how many things he can and will be able to do.... I could write a book about my childhood. Hope this helps a little. Feel free to e-mail me with any questions. Arc76@snip.net
Re: Advise from teen/adult OBPI please
I will be 65 years old this week and have ROBPI. I can't raise my arm above my head and have about 75% hand strength. Although my injury results in certain limitations, I have always considered my injury as an inconvenience rather than a problem. With the support of my parents and family and extensive physical therapy and surgery, I obtained the maximum possible recovery by my early teens. I believe the dedication and support of my parents were key to the extent of recovery I have made.
My parents were devastated by my injury but soon started to work on what was needed to help me. For over 12 years my Mother took me to physical therapy sessions. These were supplemented by exercises on the dining room table whether I liked it or not. The sacrifices of my parents and other family members cannot be overstated. The monetary sacrifice was significant because no medical insurance was available to offset the medical costs. Later on, during my childhood and teenage years, I was encouraged to participate in sports and all the other activities my friends were involved in. Certainly, my injury affected my athletic performances but I soon figured out my limitations and made the necessary adjustments.
I think you need to focus on the task at hand: providing the very best medical help to achieve the maximum possible recovery for your child. Be prepared to sacrifice your time, effort, and money to make this happen which may mean unintended sacrifices for your other children. Treat your OBPI child as you treat your other children; with love and respect without undue attention to their injury. As you child grows, be supportive when he wants to participate in activities with his friends including activities that may be physically challenging. Think about the future years and ensure your child receives the education and training to lead a successful and productive life. Finally, the emotional roller coaster for you will continue and will include your child as he becomes more aware of his injury. However, you and your child will learn to cope with the injury. How well your child copes will likely be influenced by how well you do.
John P.
My parents were devastated by my injury but soon started to work on what was needed to help me. For over 12 years my Mother took me to physical therapy sessions. These were supplemented by exercises on the dining room table whether I liked it or not. The sacrifices of my parents and other family members cannot be overstated. The monetary sacrifice was significant because no medical insurance was available to offset the medical costs. Later on, during my childhood and teenage years, I was encouraged to participate in sports and all the other activities my friends were involved in. Certainly, my injury affected my athletic performances but I soon figured out my limitations and made the necessary adjustments.
I think you need to focus on the task at hand: providing the very best medical help to achieve the maximum possible recovery for your child. Be prepared to sacrifice your time, effort, and money to make this happen which may mean unintended sacrifices for your other children. Treat your OBPI child as you treat your other children; with love and respect without undue attention to their injury. As you child grows, be supportive when he wants to participate in activities with his friends including activities that may be physically challenging. Think about the future years and ensure your child receives the education and training to lead a successful and productive life. Finally, the emotional roller coaster for you will continue and will include your child as he becomes more aware of his injury. However, you and your child will learn to cope with the injury. How well your child copes will likely be influenced by how well you do.
John P.
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kissygoose
Re: Advise from teen/adult OBPI please
Unfortunatley the best advice I can give you is not to ignore it. While I did recieve some treatment my Father refused to acknowledge my disability because he felt it would make me grow up thinking I was handicap. Well his plan backfired and I ended up having a lot more problems than I should have had. The best thing my parents could have done would have been to acknowledge it and be supportive.