I've been trying to get caught up on my blog reading. Sarah's Mom has some interesting discussions going on, which I thought I'd address here as well. The question there was weather or not teens or young adults with DS know and/or understand that they have DS?
When Angela was born, we met another family in the hospital who's daughter was born just the day before Angela, who also had DS. We were in a hospital 75 miles away, and yet they lived just minutes from our house. She and Angela were so much like developmental twins! LOL
When Angela was about 2, I had a picture of Hope hanging on my fridge. Angela would point to it and say, 'Hope!" Around the same time I got several picture books that had pictures of babies and toddlers with DS. Angela would always pick out the little girls with dark hair and say, "Hope!", so I knew she was recognizing the resemblance.
We started showing her more pictures of herself, and she'd say, "Hope!" Even though she was far too young to understand, I would say, "Nope. That's baby Angela! (really they did look A LOT alike. LOL)But you look just like Hope because you both have Down Syndrome."
By age 4 she would point out pictures of kids with DS I'd say, "You're right, that little boy has eyes just like yours. That's because he has Down Syndrome just like you!" Oh look, see his hands? They look just like your hands! That's because he has Down syndrome and so do you!"
By 5 Angela was noticing people with DS out in the community. Interestingly, her big brothers (who are much older than her) still couldn't pick it out. They would point out someone who appeared to have Autism or something and ask, "Mom...does that person over there have DS?" But Angela always knew.
Angela completely understands that there are a lot of people who look a lot like her because they have DS. She can tell you all the athletes on her Special Olympics team who have it (of 120 some athletes, about 1/2 have DS.) What is really interesting to me is to watch what happens when the team is broken up into smaller groups. The athletes who have DS seem to gravitate to one another. It's like they have their own little club. To me, as an outsider, it seems they all have a very similar sense of humor. They always understand each other's speech, even when us parents or caregivers cannot. They seem to understand what the others need, even when the person having a problem isn't able to communicate it.
The other day Angela was on an outing with a friend and his parents. He also has DS. Angela was having a problem with something and was upset, but her friend knew what it was even though Angela wasn't able to express herself.
So yes, Angela knows she has DS. No, she doesn't understand all there is to understand about having it. She knows that because she has DS, it's sometimes hard for her to learn to do new things. That she has to work really hard sometimes. She understands there are people who look like her because they have DS too. We've taught Angela she has DS the same way we've taught her she has brown hair, and brown eyes.
Not too long ago I met an adult with DS at Target. I would guess she was around 25 or so. (though its often really hard to tell because adults with DS often look much younger than they are!) Angela was talking to her, and I was having fun listening to their conversation. She was talking about the group home she lived in, and I asked if there were other people who had DS there. She had no idea what I was talking about. Clearly, she didn't understand the term, "Down syndrome". It's very possible (and probable) that some of the other residents do have DS, but she didn't have the vocabulary to identify that. I felt a little big sad for her, because I can already see how much Angela gravitates towards others like her. Just like her brothers could say, "I like these friends because they all ride skateboard." At 12, Angela has some of the words to say why she likes the people she does. I pray that DS is something she can be proud of, and never becomes something she loathes.