Question from a Non-SN Momma

630 Views 5 Replies 5 Participants Last post by fruitfulmomma, Apr 17, 2009

fruitfulmomma

Discussion Starter · Apr 14, 2009

Hi, I'd like to get some perspective on an issue from some momma's with SN children. We have two children in our church, both the same age as my oldest, that are.

One has a very severe form of cerebral palsy (his cord was knotted) and is in a wheelchair. He does not speak and is mostly blind and so it is pretty obvious to my children and we've talked about why he is like this and so forth.

The other little girl has Down's syndrome. If my children think there is anything different about her, they have never said anything to me and so I have never felt a need to point it out to them. Is that okay? I asked my husband if we should say something to them and neither one of us think there is any reason to point out her differences. I assume they'll figure it out and ask if they have questions at some point.

My best friend in elementary school had cerebral palsy (I think) and had mild retardation but no one ever told me. I guess I thought she was a bit slow but it was never an issue for me.

What do ya'll think?

Thanks.

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perstephone

· #2 · Apr 14, 2009

Quote:

If my children think there is anything different about her, they have never said anything to me and so I have never felt a need to point it out to them. Is that okay?

Why wouldn't it be ok?

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MotherWhimsey

· #3 · Apr 14, 2009

My son has a lot of medical issues, and of course both kids notice. My sister has downs and so far, neither child has mentioned the fact that she's different. Actually, I'm not sure Katie knows she has downs. I mean, I'm sure she's heard us talk about it before, but she doesn't understand what it is. When people stare at her she flips her hair back, huffs and says "would you please stop gazing at my beauty?" I wouldn't even mention it till your kids bring it up.

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AndVeeGeeMakes3

· #4 · Apr 14, 2009

Hi Nickey!

Thanks for asking. It sounds to me like you're raising some great kids. I think you're handling it well. I have a brother with Down syndrome and I do think some people take a little while to notice. As long as you're ready with an answer that is positive once your kiddos figure out that there's something different about their friend, I don't think it's necessary to mention it. If, however, you do come across someone with Down syndrome, that they notice as being different, that might be a great opportunity to say something like, "Yeah, that person has Down syndrome, just like your friend X." What that would signal is that they already know and are comfortable with someone like that.

In the event that they do ask, I would also encourage you to NOT use some of the more common myths, such as "People with Down are just so much nicer/happier/more cheerful than 'typical' people;" or "People with DS are just angels from god." IME people with Down syndrome are pretty much like everyone else, emotion-wise, only more so!

I really appreciate you coming here to ask! There is also a large group of self-advocates that you can read about at www.ndss.org.

ETA: My brother, who is 16, definitely knows that he has DS. He talks about it a lot, very passionately, as do his friends. They are learning to be able to speak for themselves with the help of their friends and family (they appeared in a video last year that aired on the NBC giant screen in Times Square!). He even recognizes that VeeGee is "special, just like me" and shows a definite affinity/solidarity for her because of that.

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alexsam

· #5 · Apr 15, 2009

Quote:

Originally Posted by MotherWhimsey

When people stare at her she flips her hair back, huffs and says "would you please stop gazing at my beauty?"

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fruitfulmomma

Discussion Starter · #6 · Apr 17, 2009

Thanks ladies. I will check out that site.

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