Sunday, October 11, 2009

So How "Severe" is it?

If you want to know a question that always puzzles a mama with a child with Down syndrome, one that would certainly be in the top 10 is "How severe is it?"  It is kind of like asking a bald man how severe his baldness is? Is it less severe when he's starting to lose the hair? Is it only severe when he's bald?  How do you measure that sort of thing? If you have high expectations, and she does well, does that mean it isn't severe? What if you had low expectations, and she's better than that - severe or not severe? Am I judging based on how happy she is? How well she does at playing games? Academically? IQ? How well she does physically climbing and such? Her health issues?  How she is compared to the other girls? It seems an impossible question to answer.

Every part of her 100% has Down syndrome - not a little, not a touch of it (that's for you, mom, lol), not "I don't see it in her it must be mild."  She is a person who has Down syndrome. On the one hand it is as 'severe' as it gets...LOL. On the other hand, there is nothing severe about Violette...she's just silly as you can see in this video from earlier today!  We, like most parents of kids with DS, feel like she's doing great!


8 comments:

lbgriffin said...

That is great insight for someone (me) who doesn't know much about DS and doesn't know anyone well who does have it. I tend to think of Violette not having it "much" because she has always done so smashingly well at things, but you're right -- DS is present or absent, and it's present in her. Having said that -- I still think she's doing well. :) She has a fantastic advantage in such a strong and loving and nurturing family who does so much to give her what she needs to be the best Violette she can be. Both Violette and all of you are very blessed.

ds.mama said...

Holy cow, can she come over to my house and give me lessons?

bizzum said...

That is so funny! You crack me up! I love when people refer to a child having a touch of Ds. I am not exactly sure what that means! I actually had a teacher ask me if Elijah still had Ds. Hopefully, Eli will sigh as well as Violette does!

Stacy said...

I love this too. "My boys obviously have a MILD FORM of Down Syndrome because you can't tell to look at them" LOL, at first it would bother me, now I use it to teach that there are no degrees of Down Syndrome. Great topic. I may use it :)

Sasha said...

I love this post, because it is so true to what people say to you or ask. I've gotten "Does he have it bad" or I don't see it to much in him" from people.

Amy said...

Violette is so smart! I love the video!!

Lydia said...

You know...when people comment that a child doesn't seem to have DS "much" -- it may sound strange, but I'm sure they're trying to be encouraging. You have to remember that sometimes strange things come out because we get so hyper-sensitive that we might say something innocently that sounds odd, and often what comes out of our "filtered" mind sounds stranger than what we would have said not filtered. Does that make sense? I'm sure we've all been there. :)

Dani said...

awww love her :)she is doing awesome with her signing..LOVED your post :)we get that also "she's high functioning" shes mild- one dr at the DS clinic said "i bet not alot of people actually realize she has ds" what do you think gives them the idea that she does? um huh- i never really thought about it..lmbo ..