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How do you explain


Forum: Children with Special Needs

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  #1  
December 28th, 2006, 07:50 PM
Mom2brodyanddani
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How do you explain your child's condition(s) briefly to friends, family, etc so that they understand and aren't confused by medical terms?


I explain her CP by just saying CP because most people have some idea of what that means, and say it causes her to have very tight muscles in her legs and very loose muscles in her torso. Her PVL is a brain injury from head bleeds and we don't know what kind of mental disabilities she may have, or if CP will be the only side effect. Hearing loss is the easiest because people understand that she can't hear and that we are trying hearing aids to improve it.
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  #2  
December 29th, 2006, 04:58 PM
trisha4005's Avatar Veteran
Join Date: Oct 2006
Posts: 116
Well, for my daughter we were told in the beginning it was CP. So I explained that she had a brain injury from something, possibly RSV or a metabolic disorder. For some reason summing it up to "brain Injury" helped them to understand. I think most people have seen enough television shows to know that if the brain is damaged somehow, there are going to be developmental and functional disorders.
Patricia


Quote:
How do you explain your child's condition(s) briefly to friends, family, etc so that they understand and aren't confused by medical terms?


I explain her CP by just saying CP because most people have some idea of what that means, and say it causes her to have very tight muscles in her legs and very loose muscles in her torso. Her PVL is a brain injury from head bleeds and we don't know what kind of mental disabilities she may have, or if CP will be the only side effect. Hearing loss is the easiest because people understand that she can't hear and that we are trying hearing aids to improve it.[/b]
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  #3  
December 30th, 2006, 07:45 PM
JuneBug2006's Avatar Forever missing Gracie
Join Date: Nov 2005
Location: Vancouver Island, BC
Posts: 5,897
I haven't reallly discussed it with many. When I do tell about Gracie's condition, they look at me dumbfounded....

Last week at Gracie's ultrasound, the tech didn't even believe me and told me I should have our blood re-tested.... UGH
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  #4  
December 31st, 2006, 09:44 PM
m.and.a
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I spend a lot of time explaining that my girls are twins, and identical twins. They don't look anything alike. Ada is double the size of Aleah. I'm more than happy to explain what/why she is trached. Her cousin wanted to know why I was "vacuuming her neck" last week. I get really bummed when people offer me their "condolences". I never know what to say, but usually I tell them that their condolences aren't necessary and that we are very happy that Aleah is such a fighter, and a survivor. I can understand to an extent because before I had a special needs child, I pitied parents who had them. Now, it's just a fact of our life.
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  #5  
January 1st, 2007, 04:53 PM
*Lindsay*'s Avatar Platinum Supermommy
Join Date: Apr 2006
Location: Virginia
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Quote:
Her cousin wanted to know why I was "vacuuming her neck" last week. I get really bummed when people offer me their "condolences". I never know what to say, but usually I tell them that their condolences aren't necessary and that we are very happy that Aleah is such a fighter, and a survivor. I can understand to an extent because before I had a special needs child, I pitied parents who had them. Now, it's just a fact of our life.[/b]

What a cute way of questioning the trach! That is sweet. I am sure I will get questions from my nephew and neices later on. Right now my nephew thinks it is neat that he and Sydney both wear glasses!

AMEN to your last 2 sentences!
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  #6  
January 1st, 2007, 07:14 PM
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Cade looks like a typically developing child at this point. The main thing I used to get comments on were his eyes because before he had surgery they were always crossed. Now I only seem to get comments - or maybe even looks - from people who know. I don't mean people who know him but people who either have experience with special needs or some kind of connection.

The two that stick in my mind is a complete stranger at walmart who asked my DH if Cade had nystagmus and then a sales associate at Limited Too when we were in there one day while my DD tried on clothes. I noticed that she kept looking at Cade and finally we ended up talking to her only to find out that her nephew has similar issues as Cade. It isn't really until you spend time with him now that you can tell he has something special going on.

Jenn
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