New Here and have a question

[Glenis]

Hi everyone, I was wondering if anyone could tell me what sort of things I can expect my daughter to have difficulty with as she gets older. She's 8 years old, right erbs palsy, fairly good rom. Her shoulder slopes down so we've already had problems with strappy tops/swimming costumes etc. Her school recently offered the children the opportunity to learn to play the flute, she really wanted to have a go but couldn't hold it in the right position. Can anyone give me any idea of what I can expect? Thanks.

[Bridget]

Hi Glenis,

My son is eight, so I know kind of what stage you are at with all of this. There are a lot of adults on this site who post regularly who I am sure will jump in with words of encouragement and their stories.

Welcome to the site. Where do you live?

Bridget

[njbirk]

Hi Glenis,
I'm 48, LOBPI.

Let me begin the conversation here, and I'm sure others will be chiming in, by talking about the emotional and psychological issues. Physically, so much depends upon her extent of injury that one really can't generalize. But emotionally, you will find that she will be tough, tenacious and resilient. Teach her that challenges are opportunities. She will learn what she can and cannot do as she grows up.

If she can't play the flute, maybe she can play something else. There will be many things she can excel at that don't demand equal dexterity in both arms and hands. Focus on what she can do instead of what she can't.

And the other really important thing I've learned is never to give up hope that things can change. I've had two surgeries in the past two years that have so greatly improved what I am now able to do. The specialists who work with this injury are caring and dedicated and they are making great progress with surgeries that improve range of motion. Who knows what will come in the future?

Nancy

[francine]

hi glenis -

can she supinate - palms up?

can she comb her hair and make a pony tail with both hands?

can she reach behind to get something out of her back pocket?

can she hold a deck of cards as if to play a card game?

how much can she move her fingers? can she grasp sometihng?

what kind of sensation does she have? can she feel temperatures?

what are the kinds of things she has problems with now?

each kid is so different in what they've gotten back through their own recovery that it's hard to say how it will affect her later on in life and that's why I asked so many questions.

It's most likely that she will have cold intolerance in that arm. We know that she will probably have a greater chance of having arthritis and degenerative disease as she ages. And it is also possible that she will have issues from overuse syndromes in the other arm.

other than that the specifics would be based on what she has now...

hope this has helped a bit,
-francine

[francine]

and I guess I want to add that they are doing so much work now in surgical repairs - like for example, Nancy Birk who is now supinating for the first time in her life after a surgical repair (!!)..that as she grows up and has an issue, it might just be repairable? At least I pray for this for all of our kid's sakes.

-francine

[jennyb]

Hi Glenis. I'm a rtbpi and am in New Zealand, tho I'm from the UK and that's where I got my injury 22 yrs ago. You probably already know the UK support website but here's the link anyway, they have been going since 1992 and have lots of members, so there's a good chance someone will have a child your daughter's age. http://www.erbspalsygroup.co.uk/index.htm Contact with other children with bpi will probably be great for her, especially in the older years when she becomes more self conscious. Nancy's response above is so right, I learned to cope with my injury by focusing on what I could do, not what I couldn't. When I read Francine's list of things, my answer to all of them was, no I can't....not in a million years! yet I have 3 children, lots of hobbies and I worked full time for many years without any use of my dominant right arm at all. I'm very happy with my life and wouldn't change a thing, and I agree the injury makes you more resilient, tolerant and resourceful. The overuse thing is a worry, but I am hoping as Francine says that medical advances will keep pace with my needs and (touch wood!) so far I've managed well without seeing a doctor about the arm for over 20 years. As and when problems crop up, I have no doubt I'll deal with those as I've already dealt with so many....changing nappies one handed is fun! Let us know how Shannah gets on and whether she finds another instrument to play....what about clarinet, it's held at a different angle than flute? Good luck!

[jennyb]

Glenis, I just found this.... http://www.flutelab.com/ they adapt flutes for all kinds of disabilities including one handed use, maybe she can have her wish after all! It's in Amsterdam, so not too far away for postage etc. Thank you for asking your question, I found a whole lot of resources that will be great in my support work with adults :0)

[francine]

JENNY THANK YOU THANK YOU THANK YOU for posting this site...Maia will be going to camp this summer and the little kids will be learning recorder. They have a tripod there for recorders! I've contacted them about the tripod and a one-handed recorder!!

Thanks so much!!
-francine

[jennyb]

you're welcome francine, i got the link from here, there are some great resources on this list. My son's learning recorder, it can get er......wearing! lolol
http://dmoz.org/Society/Disabled/Arts/Music/

[francine]

http://www.tonymelendez.com/

guitar playing with no hands and two club feet! amazing!