Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Sunday, October 04, 2009

Answer of the day

Molly asked: "What's one thing you wish people knew about DS?"

This might sound a little obscure, but I wish that people knew that if a person has DS, their ability (or inability) to talk has nothing to do with their ability to understand and comprehend. I have one friend who's daughter hardly talks at all. At 14 years old, she only says what is really important to her, and does a lot of grunting and growling. And yet, she reads and comprehends above grade level, loves math, and is a fantastic bowler.

I actually know a lot of people with DS who are like this, and everyone sells them short. Remember the old saying, "Never assume ANYTHING!"

Angela talks A LOT! She talks incessantly. Often she's talking to people I can't even see (the Jury is out as to weather or not SHE sees them!) Driving in the car with her can be painful to your brain unless she's sick and falls asleep. And yet, for reasons unknown to us, she doesn't read very well. Actually her reading is regressing I think, partly because she HATES to read. We have yet to find something that interests her enough to read about it. (can you tell this frustrates me?) She hates to write too, though that is due to the damage to her fine motor skills done by a stroke. She will pretend write, the same way a typical child does around age 3 when they're just getting interested in writing. But Angela will use a computer and do some writing using a keyboard. It's still like pulling teeth to get her to do it though. Angela understands pretty much everything you say to her, and she will joke with you, and harass you. But don't expect her to read you a story!


Molly said...

That is so true of autism too. Like they say "If you've met one child with autism you've met ONE child with autism"

It sounds like the same goes for Down Syndrome!

Tamara said...

What a good answer. I think that the difference between receptive and expressive communication is different for every person who has Down syndrome, and I think it really has broad impacts. For those people who aren't very verbal, people assume they don't understand. But those who are verbal still may not communicate to the degree others expect.

You're so right - never assume ANYTHING! I don't know if I would have picked it for my one thing, but I would have wished I would have after reading this!!!

Lund7 said...

What a beautiful picture of Angela at the top of your blog page! Did you take that photo?

My girls didn't see Angela at the game Friday night...did you end up going or staying in where it was nice and warm!!??

The swimming that you mentioned in a previous post, is that with Keanne? We are wondering about his schedule.

Leah said...

Thanks Linda! No, I can't take the credit for that picture. It's a professional pic.

We didn't go to the game Friday. It was just too crappy out for me!

Swimming, yes that's with Keanne. Have you heard the news? Yeah, he's leaving the second week of January. For good. Moving himself to Hawaii. Our program will be gone. I'm very much upset about the whole thing. I'm trying to be happy for him. I mean, who wouldn't want to retire in Hawaii? He's very excited because they have no swimming program there. But when he leaves, we won't have one here either. As far as I know, there is no one to take over this program. Keanne has been a wonderful gift to our special olympics community, and he has given a lifetime of service. I'm just very sad to see this opportunity for Angela disappear.

datri said...

One of my favorite sayings--"Just because I can't talk doesn't mean I have nothing to say!"

Kayla being nonverbal is definitely one of the most frustrating things. Aside from the fact that everyone underestimates her capabilities, I think that it is really an issue when trying to play with "typical" peers (then again, that could also be the autism and she doesn't WANT to play with typical peers, LOL)