OBPI survey from a mom of a little child with obpi

[francine]

just a mom of an little one with obpi wanting to understand this better.... bare (no pun intended) with me please

Knowing what you do now from being part of this public community - what would have made you feel better growing up?

What is your vision for the children with obpi of today? What do you think will make their lives better?

Thanks for your time,
francine

[Kathleen]

Francine

Knowing what I know now...all these years later... I think having a support group of friends who were Obpi like me would have been a wonderful thing for me... I was so busy being normal and pretending that nothing was different about me... I did not have time to really address many issues that arose later in life. It would have be great fun just to meet others and compare arms, the way Judy, Nancy and I did two years ago. It was so amazing for me to see others who moved like me and also understood my sick humor LOL...
Most of all I would have loved to see my Mom have some of the support that is available today. It would have been so good for her. She was told it was not her fault but I know she always felt responsible. I wish she was able to find all this information and we could have shared it together as we did so many things.

I would have loved to know exactly what my injury was instead of guessing... that was not because my Mom deprived me - she told me everything she knew... it was a lack of proper medical care and support. As we know now this can lead to secondary injuries...

What I want for the future, is to see more of the medical community take part in the recovery, and make them selves available for educations programs on the treatment of the Obpi child. I would especially like to see more funding for a long range study on those of us who have completed (well not completed but who have lived and worked and functioned in society for so many years) A long range study along with lifestyle and work history would go a long way in preventing secondary injury and maybe curtail some of the overuse and often abuse of the unaffected arm. As you know most of us have not only smaller arms but the entire side of our body is a bit smaller and we develop in a different way then we would have had we not been injured during the birthing process. So studies on us would probably help to make life easier for the children because we may have been neglected in our medical care and advice

As far as making their lives better, bring the children to support gatherings. Perhaps having local gatherings at least a few times a year would greatly help them as they begin to mature. Having people who are facing the same daily challenges and frustrations helps. It also helps them to realize that they are not alone and will help to build better self-esteem. They will learn from each other and what better teachers then those who live with the same injury.

I also think that as much as possible the anger and frustration the parents feel should be kept from small children. Children often misunderstand a parent’s anger and feel responsible for it. And we know that is not the case, parents are just so frustrated. Most important of all the issues I mentioned is to allow them to be kids to try whatever they want and to experiment to feel free to make mistakes and not worry about the right or wrong way of doing things.
I often feel that being obpi made me a more creative person and definitely a much more stubborn strong willed person. Let the children fly like Eagles make their own mistakes... It's OK to fail - It is not OK not to TRY! Too much pampering will disable them I am always grateful my Mother enabled me. She always said “Can’t means you won’t” so the words I can’t were not allowed to be said until I tried. If I tried and could not physically do something I was not pressured to do it but to try something else. Not everyone is good at everything. I was also taught to worry about what I could and could not do, not to watch what others do. Not everyone is good at everything. Let them explore all options even if you know they may not be able to do something let them try and if they fail praise them for trying.

OK jumping off the soap box. I was just answering your questions as honestly as I can. As you know I have very strong feelings on letting the children feel and be normal. I am well almost normal LOL.
Kath

[Robert]

Hey Francine
I’m still in my teens for another month and I’m just starting to ask myself the question you just asked. "What would have made me feel better growing up?" I can't tell you enough how much i needed more information than what I was given. Seriously, before i found this site, i felt like just another deformity because NOBODY EVER TOLD ME ANYTHING. And that is really starting to play on my mind now... "Why wouldn’t mum tell me the truth" "why didn’t dad tell his youngest son what he was in for as a teenager" and so on…
One thing that would have been better is if my schools were given more info as well. The only thing they were told is "Robert can't use his right arm much." From Kindergarten to grade 12 I attended 5 different schools so I was more often than not singled out in front of the class giving a lie of an explanation. My main excuse was “my elbow is permanently broken so it limits movement. I can see now why i am such a quiet, reserved person. I hate being in the eye of many people because I feel they are looking at my arm.
As Kath said, a support group would have been an immense help on my thoughts and feelings toward my injury. It’s taken me 20 yrs to find someone in the same world as I am in.
One thing that has really helped me out is learning music. I am a pretty good drummer (I’m left handed and the first time I ever played drums was at school on a right handed kit and I got an A+ for it.) Now I play left handed and it has strengthened my arm and grip up heaps. I also play a lot of guitar, which has helped the movement in my fingers build up. Since I started playing these instruments, my arm has almost doubled in build and my fingers are a lot more controlled. So if you can get your young one into playing music he/she will appreciate it later…
I hope this has helped a bit Francine, life isn’t going to be the easiest but it doesn’t need to be a constant frustration.
See ya later,
Rob…

[njbirk]

That is easy.
I don't even have to think about it.
I would have liked to have known I was not alone.
I would have liked to have had someone help me with the psychological effects as a teen.

And
I would have liked for my mom to have told me more about what she was feeling about it. Her focus was on me and I never imagined this affected her too.

Nancy

[francine]

wow - thanks for your posts.... so I am trying to internalize all that you have said... you know it's not easy to do that especially when it's an emotionally charged issue.

Anyway - I have some questions/comments.

When do you think is the right age to tell a child what happened and how it happened? And what approach do you use?

So far - because of Maia's tender age all I've told her so far is that when she was born and came out of mommy's belly (she thinks she poppped out of my belly button!) she woke up and looked around. All the parts of her body woke up except "leftie" and we went to a special "armie" doctor who knew how to wake it up. But because it was such a sleepyhead we have to work extra hard to get it strong like "rightie". Then we do little 'plays' about how rightie is always taking a turn and he doesn't want to share with leftie and leftie finally gets turn and is so happy....

When do you think she will ask me for more details? when did you start questioning the details? What if anything did they tell you and how did that feel when you first found out?

About guitar... Maia is a left obpi and she cannot supinate so do you think that we should teach her the opposite way and restring the guitar?

So far we have quite a few children with obpi in our area and Maia has visited them - even when they were post surgery and splinted. Maia has been very happy to see them, especially to see that they had the same splinty as hers. I think these kids can really grow and support each other being so close in distance. I guess we should try harder to get them together more often. Thanks for that idea.

Robert - how about showing your mom www.injurednewborn.com ? It may be very healing for her to see it all in print like this - of course it'll probably be difficult yet healing.

thanks again for all your time and efforts to educate me,
francine

[Robert]

Francine,

I have obpi in my right arm, and i play guitar right handed, meaning i hold the neck with my left hand. Maia would probably hold it the other way round so a restring would be in order.
I will show my mum that site when she comes to visit next time. Thank you

Rob...

[francine]

Robert - can you send us a picture of you playing guitar? It would probably mean a lot to Maia.
-francine

[jep98056]

Francine:
I think knowing a little more about my injury would have helped me understand why my arm didn't work like the other one. Growing up, I thought I had cerebral palsy because everyone else at the therapy clinic had CP. At age 18, my doctor wrote to the local draft board saying that I had a brachial plexus injury but I still didn't know what that meant and didn't think to ask. I was doing OK and had a plan for the future. Many years later my injury was described in detail by another physician.

During my youth and most of my adult life, I was oblivious to the emotions my parents went through. Sometimes they would talk about when they were finding out about the injury but my injury was always no big deal to my family and friends. I think being reminded of my parent's pain during my growing up years would not have been helpful to my psyche. I know now that my parents were devastated by my injury and my Mother feels guilt to this day (she's 94) even though she was not at fault in any way.

As evidenced by SusanV's post in the General Forum and responses, the future can be pretty scary for OBPI parents and victims alike. OBPI parents have enough to think about in the present let alone prepare their child for the future. However, I think my parents could have helped me look at the future better by discussing potential career choices when I was in high school. I may have listened or maybe not because at about the same time, I had realized that I could not effectively compete for physically demanding work. So, I focused on going to college and ultimately decided on a career in engineering. Hence, I think OBPI parents need to consider the maximum possible recovery of their child to include the education and training to lead a productve life. OBPI parents need to help their child take advantage of the educational opportunites available so their child can make the best career choice for themselves.

Kind of a long winded response and I hope it's helpful.

John P.

[Robert]

i sure can francine.
first though, i have to borrow a camera and a scanner. ~
i'll do my best though.
see ya
rob