United Brachial Plexus Network

My best friend is Denise and her son is David. When he was born, we found out he has Erbs Palsy. Went through 16 months of therapy and then was released from therapy. Then the Lord placed a heavy burden on my best friends heart to contact bpn and she got a hold of a women that really opened her eyes, that her son is disabled for life, that this is never going to go away, that he will never be a fireman, or a warehouse worker, or that when he gets into school he won't be able to play ring aound the rosie or even button his pants or shirts. Little David is going to be 2 years old this December. We need help finding a specialist in California, if there is any and a lawyer that we can contact, My best friend doesn't have alot of money, living check to check, like most people, but we know that the Lord is going to taking care of everything!! How would we get in touch with SSI, and what do we need? Thank you for all your help and support!! God Bless You!!! Karen

I dont know about David, or the other lady's son- but Ive never met a kid who couldnt play with other kids in nursery school because of his BPI- there has to be some other reason...as far as fireman...who knows, who cares...thats like 15 years down the road- my son is too darn short to be a fireman, seriously now-he is very very short,at 15 he is ...under 5 feet-way under 2 of my kids are really short- but that doesnt mean his life will be forever disfunctional...
and if this little David dude cant button his pants mom will be there to help- try velcro and snaps
CA has some great doctors tho- and I totally agree with you that it would be in her best interest,especially if she is working, to find a therapist or a group that she can attend,or some kind of support system- that will help her learn how to help David with these things-if you are looking to find more info about CA specifically I suggest you post again and put in the title somewhere you need CA information- feel free to email me if you dont get anymore answers and Ill find you someone in CA -
you are a GREAT friend!
mom@bellsouth.net

Hello Karen (and Denise),

I echo Mary's statement that you are a great friend! Thanks for helping Denise to connect with our online community.

I spoke with Denise (if she is the same Denise?) several days ago, and while we discussed many things I don't recall talking about ring around the rosy? In any case, all of the areas of concern expressed in your email can be addressed by the people posting here on this website. Just ask away, and we will be happy to share our experiences with you in hopes that we can offer support and information.

Please be sure to take a look at the awareness materials on this site, information on schools and working with teachers is there as well.

Regarding Denise's concern about games at school, I don't think it is as much a matter of not playing games as it is being careful to avoid injury. For instance Red Rover, Red Rover might not be such a great game to play if you just had the mod quad. Also she will want to advise caregivers not to swing or pull her son by the arm/arms, and to pick up by the ribcage and not from the armpit...

As for the future...each of us has had to come to terms in our own ways with the reality of living with this disability. It is easier for some people and harder for others, easier on some days and harder on others...it is generally known as a roller coaster of emotions. I'm sure that Denise is experiencing similar emotional stuff, and the best we can do is offer a listening ear and supportive words.

From talking with Denise, I understand that she is concerned about what the future holds for her son, and we can all probably relate to that in some way. I think it is okay to express concerns and worries, to try to think ahead, to recognize what the future might hold. It is just as important to focus also on all the positive possibilities for her son...speaking from my own experience, as my son has grown and developed his own interests and personality this has become so much easier!

All of us face different challenges at different times related to this injury, and hopefully we can all help Denise out!

Thanks again for being such a great friend! Denise is lucky.

Bridget

Where was your friends son receiving therapy? I'm in CA (Bay Area) and my daughter goes to OT through California Children's Services. I did have to push them to extend services for her. She receives PT from a private therapist. I'd be happy to discuss particulars with your friend if she'd like to email me.