IS vs. HAS

I have three kids in the house. They are not Down syndrome.

One is a 16 year old girl Angela. When I describe who she IS, I describe a young lady who IS full of spunk. She IS the life of the party. She IS an adrenaline junkie. She HAS brown hair. She HAS brown eyes, and she HAS Down syndrome. She IS NOT Down syndrome. She HAS it just like she HAS glasses on her face.

Another is Axel who turned 12 yesterday. He IS compassionate. He IS caring. He IS a genuine "old soul". He HAS big feet. He HAS brushfield spots hiding in his brown eyes, and he HAS Down syndrome.

The last is Asher. At 7 1/2 years old he HAS the world in front of him. He meets it head on every day. He IS learning to talk. He IS learning how to eat food. He IS learning that his dad and I love him no matter what. He HAS a home now. He HAS family. He HAS down syndrome, and it is the least of his worries.

My kids aren't Downs kids. They are kids, and they have Down syndrome. 

Awesomeness

You may not be a fan of flash mobs, but if you have a loved one who is differently abled, you'll like this one! (ummm grab a tissue.)

The Store

It's never happened to me before.

Asher and I were in the store check-out line. In front of us was a young mom with a boy around 7 years old. The boy turned and saw Asher standing behind him. "Hi!" he said to Asher.

Asher immediately waved "Hi." back.

"Hey! That's now how you say, hi!" the boy said. "Open your mouth and say hi!" he demanded.

I quickly responded, "That's how he says hi. He talks with his hands using sign language."

His mom jumped in, "See? You learned something today. You learned how to say "hi" in sign language. Isn't that cool?"

The boy didn't look very happy with our response. He looked back to Asher. "You're supposed to talk with your mouth. Just open it and say hi." His mother, looking mortified, roughly turned him away as she leaned down and whispered a lecture in his ear.

I looked down at Asher.  At that very moment I wanted to do two things at once. First, I wanted to get in the kids face and tell him some things are better kept in your thinking bubble. Then I wanted to leave. Forget paying for our stuff because at that moment I was feeling tears well up in my eyes.

A 10 second exchange with a little boy brought me to tears. In nearly 16 years of parenting kids with Down syndrome I've never had anything like this happen to me. But wait...it didn't happen to me, it happened to Asher! That's what upset me so; that it happened to Asher. The boy didn't even say anything mean, really, but I instantly pictured Angela walking through her high school. How often does this happen to her? How often do people give her a hard time? And Axel? Does this happen to him? So what that neither Axel or Asher would understand the words the boy used, they both certainly understand the tone behind them.

We didn't bolt from the store, but when Asher and I did get to the car I gave him a big hug. "You're perfect Asher. Everything about you is perfect."

What does she know?

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.

What Big Brother Doesn't Know

I have one of the biggest smiles I've ever had on my face at this very moment. Why? Because finally someone is going to feel the consequences of using the "R" word on national television. Remember this post?

From the New York Post

February 27, 2008 -- THE "Big Brother" contestant who stirred up a controversy when he called autistic children "retards," has been fired from his job.

But Adam Jasinski, who worked for the United Autism Foundation, doesn't know he's been canned.

He is sequestered in the "Big Brother" house in LA, cut off from contact with the outside world, in keeping with the show's rules.

The foundation announced his firing on its Web site yesterday.

At least one advertiser pulled out of the show following the public outcry over the crude remark and several autism groups even called for CBS to cancel the reality series because producers chose to air the remark in an edited version of the program.

Jasinski was heard on the program saying that he could call children with autism whatever he liked because he worked with them.

"Mr. Jasinski will no longer work for or represent the United Autism Foundation since he caused tremendous damage to UNIAF," the announcement read.

There is also a comment on the United Autism Foundation website