Child with one arm

[toby]

Hi-
My good friend's DS was born with his arm missing from his elbow down (doctors aren't sure why). He is now a strong, outgoing 16 month old, but my friend is trying to prepare for the future when he understands that people are talking about him, staring at him, kids are mean etc. People whisper and stare now and kids often come up to my friend and ask what happened...she can deal with this, but in a year or so, her DS will know (based on others' comments) that he is "different."

My friend is looking for some guidance through this challenging time and what would really help would be for her to connect with another parent whose child is missing an arm/limb. I know that it isn't that common, but I thought that I would throw it out here to see if anyone is in the same situation and would be willing to communicate with my friend.

Thanks!

[brittone2]

Hi-
My good friend's DS was born with his arm missing from his elbow down (doctors aren't sure why). He is now a strong, outgoing 16 month old, but my friend is trying to prepare for the future when he understands that people are talking about him, staring at him, kids are mean etc. People whisper and stare now and kids often come up to my friend and ask what happened...she can deal with this, but in a year or so, her DS will know (based on others' comments) that he is "different."

My friend is looking for some guidance through this challenging time and what would really help would be for her to connect with another parent whose child is missing an arm/limb. I know that it isn't that common, but I thought that I would throw it out here to see if anyone is in the same situation and would be willing to communicate with my friend.

Thanks!

I imagine the child is getting early intervention services, like PT and/or OT. I would suggest they speak with their case manager in that case and see about getting networked w/ some support groups. Even if she can't find local parents of children with limb-related issues, many of their experiences will be similar in some ways (for example having a child in a wheelchair will still create questions from other kids and adults, etc.).

A lot of her attitude as a mom will help shape her DC's experience (IME as a pediatric PT prior to having my kids). She should be honest and just give a simple, polite answer to kids, IMO. Yes, DS is missing part of his arm. He was born that way. He can do most things other kids can do. Smile, be as friendly as possible, etc. In time, he'll probably take over that role and explain for himself. In a school setting I"d probably arrange to come in early on and explain his condition to the class and answer their questions. As their DS gets older he may feel comfortable taking over this role for himself in certain situations.

She certainly should try to find a support group of special needs kids in her area if possible. Even if the parents aren't dealing w/ an identical condition, I suspect there will be some similarities in the challenges they face. Her DS's therapists, case workers, etc. should be able to direct her to local resources (schools often have groups for parents of special needs kids, etc.) In terms of children with limb-related conditions, she might have more luck getting in contact w/ people via the internet, or calling a prosthetist's office or children's hospital and see if they can network her with a group or other resources. As her DS gets older she may also want to have him meet adults with amputations, etc. so that he can see how they function at their jobs, etc.

Gotta run and get my DC to bed but I'll think more about the question and see if any other ideas come to mind.