dealing with questions from others

iVillage Member
Registered: 04-12-2003
dealing with questions from others
3
Wed, 12-15-2004 - 3:40pm

Hi everybody. I am a PT working with a child who has age appropriate skills but extremely poor balance due to a lesion in his cerebellum. He now wears a helmet for safety reasons. His mother is starting to get questions about his age, his skills, his falling, etc. She asked how she should deal with this. I thought I'd come to you guys for your suggestions since you've BTDT. I know with my daughter I dealt with questions like "having a bad day?" due to her extreme irritability for the first year of life due to severe reflux. It was hard for me to deal with and it made me feel very unwelcome. After all, we were having a bad year not bad day.

My best thought for this Mom is to come up with a specific phrase. Something she can tell everyone. I always tend to go with the scientific e.g. "He has a lesion in his cerebellum that affects his balance."

Any thoughts/suggestions.

Thanks - Stephanie

iVillage Member
Registered: 03-19-2003
Thu, 12-16-2004 - 12:47pm

Hi Stephanie, glad you dropped in...I apologize for my tardiness in answering...and I'm probably not the best person to be answering at the moment.

 


 



iVillage Member
Registered: 10-21-2003
Thu, 12-16-2004 - 1:09pm
I'll jump in although Stephanie may have already read my answer on the Cerebral Palsy board. I am a straightforward person so I tell people who ask or stare, or whatever that she has CP due to a birth injury. Her problems are noticable as she is in a wheelchair, and she does not speak using words. She uses eye gaze and picture symbols. If it is a child then I tell them that her muscles do not work the same as theirs and she needs to use the chair, or pictures. I also tell them that she does talk but only in a different way. If the person wants to hear more about our situation then Alicia and I tell them together...if they cannot handle the fact that she is different then they can lump it. The world takes all kinds to function. My biggest questions are from thepeople who think that because she PHYSICALLY is disabled it means that she is MENTALLY disabled as well. SO if someone is talking to her for the first time, I tell them what her yeses and nos are and that they can ask her directly...I dont answer for her she can do it. That usually lets them know that she is "all there". If not then I tell them that she is typically developing emotionally, socially, and chronological age wise.
So I guess my answer is that find a slick, one or two sentence answer that can let them know that the helmet is for HIS protection (sometimes people think its all about THEM...KWIM?), with an opening for the questioner to feel free to ask more questions if they are interested/ I always answer questions about ALicia's condition because it is important for people who do not know anyone with a disability...that a diagnosis does not change the fact that there is a human being attached to the disability. They need to know that our children/family memeber/friends are thinking feeling loving people who happen to have something different about them.
iVillage Member
Registered: 02-19-2004
Thu, 12-16-2004 - 3:24pm

Hi Stephanie!