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hbugal
Lesigh
Member since 2/07 15928 total posts
Name:
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Question...for those of us with "Special Children"
Are you offended when or if someone askes you "what's wrong with DS/DD?"
Ariel has Mosaic Down Syndrome. Children with the Mosaic form of Down Syndrome dont always have all of the facial features of "typical" Down Syndrome individuals. Once you get to talking to her it becomes evident right away that she is a child with Special Needs.
Ariel is 14 and Ive never been offended. I actually have found that the people who have taken the time to ask are truly concerned...or have something to offer that might help...or simply want to understand...
I just wanted to know what your thoughts are...
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Posted 2/20/08 10:29 PM  |
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Long Island Weddings
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JTK
my 4 boys!
Member since 6/06 7396 total posts
Name:
Kristi
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Re: Question...for those of us with "Special Children"
I often do get insulted but i try not too.. my son has aspergers and i often forget that he is "different".. when someone points out his differences especially in a derogatory way i get offended. to me he is perfect.
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| Posted 2/20/08 10:41 PM |
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SPECIALNEEDSMOMMY
A Healing for Gregory
Member since 1/07 1217 total posts
Name:
Barbara
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Re: Question...for those of us with "Special Children"
This is a subject close to my heart. I have a 71/2 year old who is multiply-disabled ... severe seizure disorder, ataxia, apraxia, functionally deaf and a significant number of developmental delays. He "looks" perfectly normal until you attempt to interact with him. He does things like a 2-3 year old. I am always questioned ... sometimes very rudely" with "What's his problem?" Depending on my mood, I sometimes give a nice answer and I sometimes say "Nothing is wrong with him, but I can see you have no class." Special Children are a gift from God. We are the lucky ones to be blessed with them! Anytime you need to vent, talk, whatever ... please feel free to FM me.
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| Posted 2/21/08 12:22 AM |
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hbugal
Lesigh
Member since 2/07 15928 total posts
Name:
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Re: Question...for those of us with "Special Children"
Anyone else...?
Please feel free to FM me privately.
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| Posted 2/21/08 1:42 PM |
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MsMBV
:P
Member since 5/05 28602 total posts
Name:
Me
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Re: Question...for those of us with "Special Children"
My brother is DD & has multiple diagnoses. I guess for me it depends on the way that someone asks. If they say "what's wrong with him" in a way that appears innocent, I just assume they have no other way of expressing their inquiry. But when they have that "ew" tone to their voice, or they say things like, "what happened," then I get offended and defensive. When I was growing up I took care of him a lot and one of the major things that would determine for me if a relationship with a SO would work was how they interacted and reacted to my brother. The fact is that I love my brother and most times forget that he appears different to other people, but people are naturally curious about things, and I think most times it comes from a good place of wanting to understand. KWIM?
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| Posted 2/21/08 2:02 PM |
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Re: Question...for those of us with "Special Children"
I know in my field that most kids with autism are not only completely "normal" looking, but usually stunning looking children...
So, people will interact with them, and then see the child engage in unusual behavior. Parents aren't asked "whats wrong" - a lot of the time, people look at them as if they have no control over their "bratty" child.
Thats the hardest thing for parents - to go out in the public with their child and just have a regular experience... without people watching, asking, responding.
as a professional, I never ask another parent "whats wrong" with their child when its obvious that something isn't "right." I don't see too many appropriate times for someone to ask that question, IMO...
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| Posted 2/21/08 2:22 PM |
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hbugal
Lesigh
Member since 2/07 15928 total posts
Name:
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Re: Question...for those of us with "Special Children"
Posted by lipglossjunky73
I know in my field that most kids with autism are not only completely "normal" looking, but usually stunning looking children...
So, people will interact with them, and then see the child engage in unusual behavior. Parents aren't asked "whats wrong" - a lot of the time, people look at them as if they have no control over their "bratty" child.
Thats the hardest thing for parents - to go out in the public with their child and just have a regular experience... without people watching, asking, responding.
as a professional, I never ask another parent "whats wrong" with their child when its obvious that something isn't "right." I don't see too many appropriate times for someone to ask that question, IMO...
I love the way you put things....
I wish there was an appropriate way of asking the question..."whats wrong with......" I for one would love there to be some PC way of having people ask me that about Ariel...She is such a GIFT and a truly delightful child. I feel that getting her "story" out there to as many people as possible would simply help others to understand individuals with special needs...
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| Posted 2/21/08 4:58 PM |
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InShock
life is good
Member since 10/06 9258 total posts
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Re: Question...for those of us with "Special Children"
What is a good phrase if you're truly interested in the child? Being in the education field, I am sincerely interested in ALL children but would have no idea how to express that to a random mother.
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| Posted 2/21/08 5:06 PM |
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hbugal
Lesigh
Member since 2/07 15928 total posts
Name:
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Re: Question...for those of us with "Special Children"
Posted by InShock
What is a good phrase if you're truly interested in the child? Being in the education field, I am sincerely interested in ALL children but would have no idea how to express that to a random mother.
I know that when Im speaking to a mother with a child with Down Syndrome I usually will tell them that I have a special little girl at home just like them...they always know exactly what I mean and the conversation just flows...In the past I have also asked where the child goes to preschool or where do they receive services...
I just wish there was some way that these types of questions could be asked..b/c most people, like you, are sincerely interested...or rather the ones who would want to ask are sincerely interested...KWIM.
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| Posted 2/21/08 5:28 PM |
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Lizzy
Carson's Mama
Member since 2/08 2430 total posts
Name:
Elisabeth
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Re: Question...for those of us with "Special Children"
My brother is 27 and has Down's Syndrome and it used to bother my mom a lot. Actually, my mom didn't deal well with having a DD son at all. That is why he lives with me now 
It would bother my brother only when small children would point and say things like "why does he look different?" That would just break his heart because, truthfully, I don't think he realizes he is DD. He knows he has Down's, but we've never treated him as special.
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| Posted 2/21/08 6:18 PM |
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Re: Question...for those of us with "Special Children"
I honestly feel if you are comfortable as a parent, offer that information up - parents have done that to me without even knowing I'm in the field - they may say, "Oh - he has some trouble communicating" or if the child comes up to Cailen - he seems to attract a lot of special needs kids, the parents will look nervous, and I will let the parents know its ok. Usually a parent can tell by the way I'm interacting with their child that I have some knowledge...
If you say without your child hearing, "He needs a little help with... or he has trouble with..." then you are already educating. People should "get" it then without needing further explanation - do they really need to know the actual diagnosis, or what that diagnosis means and how it manifests in that specific situation?
If you say "autism" people still conjur up images of head banging screaming children in an institution somewhere, or Rainman. So, if someone says, "He doesn't understand... or he has difficulty with..." people will be more receptive. If it is someone you will see again or have further conatct with, letting them know matter of fact that they have autism/ADHD/etc may then be helpful AFTER the person has the opportunity to see the child without any preconceived notions....
But if the child is misbehaving, the parent saying, "He has difficulty with crowds/loud noise/etc. " may be helpful for the evryday person, and then follow it up with something about autism.
I read on a listserv a long time ago that a mom made up a brief explanation of autism on business cards and when people were witnessing a meltdown at the mall and came to her for help, she would hand them a card. I thought that was great!
Message edited 2/21/2008 8:44:03 PM.
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| Posted 2/21/08 8:43 PM |
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hbugal
Lesigh
Member since 2/07 15928 total posts
Name:
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Re: Question...for those of us with "Special Children"
Posted by lipglossjunky73
I honestly feel if you are comfortable as a parent, offer that information up - parents have done that to me without even knowing I'm in the field - they may say, "Oh - he has some trouble communicating" or if the child comes up to Cailen - he seems to attract a lot of special needs kids, the parents will look nervous, and I will let the parents know its ok. Usually a parent can tell by the way I'm interacting with their child that I have some knowledge...
If you say without your child hearing, "He needs a little help with... or he has trouble with..." then you are already educating. People should "get" it then without needing further explanation - do they really need to know the actual diagnosis, or what that diagnosis means and how it manifests in that specific situation?
If you say "autism" people still conjur up images of head banging screaming children in an institution somewhere, or Rainman. So, if someone says, "He doesn't understand... or he has difficulty with..." people will be more receptive. If it is someone you will see again or have further conatct with, letting them know matter of fact that they have autism/ADHD/etc may then be helpful AFTER the person has the opportunity to see the child without any preconceived notions....
But if the child is misbehaving, the parent saying, "He has difficulty with crowds/loud noise/etc. " may be helpful for the evryday person, and then follow it up with something about autism.
I read on a listserv a long time ago that a mom made up a brief explanation of autism on business cards and when people were witnessing a meltdown at the mall and came to her for help, she would hand them a card. I thought that was great!
Thanks for the input...as a parent I do a lot of the things that you suggest...
You made the point about how people can tell that you have "knowledge" b/c of how you are interacting with their child...as a parent of a child with special needs I definitely have a "6th" sense about people like you..sometimes its just in the smile that they give my daughter.
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| Posted 2/21/08 8:50 PM |
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LI-Joy
Member since 10/07 2910 total posts
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Re: Question...for those of us with "Special Children"
Posted by lipglossjunky73
I honestly feel if you are comfortable as a parent, offer that information up - parents have done that to me without even knowing I'm in the field - they may say, "Oh - he has some trouble communicating" or if the child comes up to Cailen - he seems to attract a lot of special needs kids, the parents will look nervous, and I will let the parents know its ok. Usually a parent can tell by the way I'm interacting with their child that I have some knowledge...
Liza, maybe your adorable DS will follow in your footsteps and work with special needs children also. The parents whose children you work with are truly blessed to have you. I can tell this by all your responses.
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| Posted 2/21/08 9:08 PM |
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