Whoops!

A few weeks ago, at Sheridan's water therapy, I noticed an older gentleman in his 70s who was coaching a woman as she swam laps on the other side of the pool. Somebody then pointed out to me, "Did you see that man over there? His daughter has Down syndrome!"

I couldn't actually see his daughter given that she was swimming laps, but I was excited to meet them both.

Now, many of you might remember Chrystal's attempts to create a much-needed gang sign (and her sequel). And I have read countless posts about people wondering whether or not they should approach a parent of a child with Ds. Or approach a person with Ds. We've all been there.

But I just walked right up to him and said hello with a big ol' smile on my face...

"Hi! My name is Lisa. I saw you working with your daughter over there. I just wanted to introduce myself and say hi." Now pointing to Sheridan in the water, "This is my son Sheridan. He has Down syndrome, too!"

"Oh. My daughter doesn't have Down syndrome..."

Oh. Shit.

"...but if you HAVE to label her..."

Oh, jeez. JEEZ!! No! I don't HAVE to label her... I don't WANT to label her!

"...the doctors say she has Williams syndrome, but really, she was a hypocalcemic baby. Too little calcium and other stuff stunted her growth and she has pretty severe mental retardation."

Nervous and feeling awful because I likely offended the man, I try to get out of the conversation with a genuine smile and sentiment... "Well, I just wanted to say hello and learn a little bit about you and your daughter. She looks like she's a great swimmer. I hope Sheridan will love swimming that much one day!"

He kept turning to look at Sheridan. "Are you SURE he has Down syndrome? He doesn't look like he has Down syndrome."

"Yep. He does."

"Hmm. Wow. Are you sure? He doesn't look like he has it."

"Yep. I'm sure." Insert toothy grin.

"Well, good for you for getting him in the water and having him so active so young. He looks like he's doing really well!"

And then he proceeded to open up and we had a great conversation about his daughter and his life raising a child with special needs.

He told me his daughter is 45 years old and she still lives at home. That might freak some people out, but it warmed my heart. I would love for Sheridan to be able to stay with us - we hope to eventually buy a home that has an in-laws quarters so Sheridan can have his independence, but we're close by. But, of course, Sheridan might have a thing or two to say about that ;-)

He told me his wife is writing a book about the importance and benefits of keeping your child with special needs at home (rather than having them institutionalized, living in assisted care facilities, and enrolling them full time in adult day care). Remember, they come from a VERY different era - most kids with special needs were institutionalized. I felt like I was standing in the presence of greatness. Isn't that odd? That we perceive it as "amazing" when somebody chooses to keep, raise, protect, aid, and support their children? It shouldn't be noteworthy. But 45 years ago they were rebels. And that is awesome to me.

He told me to make sure I stay on top of the schools - they fought tooth and nail to make sure their daughter got the education she needed and deserved. That she wasn't segregated, but that she also got the support and special classes she needed. He mentioned, "back when we were fighting the school district, a new federal law passed that said our daughter had the right to the least restrictive education, and we filed a lawsuit to make the district create an educational environment that was right for her." HE WAS A TRAILBLAZER!!! He said they eventually got the district to pay for private school and the lawsuit was dropped - he and his wife are fighters. I loved that.

And here's one that scared the crap out of me, but I appreciated his story... As he shared the story his eyes got glassy. He teared up. He wiped under his eyes to avoid the tears from falling down his cheek, "This is something we will never recover from. It's been really hard on her, and we will never get over it." His daughter was kidnapped a few years ago. A man randomly took her off the street, shoved her in his car, took her to an empty parking lot, and tried to rape her. She told the abductor, "I'm sorry. I don't know what you want me to do. I don't understand things very well. I'm disabled. I've never done this before." The abductor got so angry that he gave up, roughed her up a bit, and then dumped her in the parking lot of a local mall.

I have no words for this. Complete fear gripped me... our children can, at times, be very vulnerable. My heart was broken for her, for her dad, for her mom...

The dad told me that I was lucky that Sheridan has Down syndrome. In his experience, the young men with Down syndrome are able to do more for themselves (compared to people with other disabilities at adult facilities he has met). He kept saying over and over how fortunate we are to have a child with Ds.

He told me his daughter swims in the Special Olympics, and they were training. "Official training doesn't start for a few months, but she likes to eat and she's gained a lot of weight. So, we're starting her early to help her get in better shape." She's competed for over 4 years... starting at 41 years old! She's amazing!

At the end of our conversation his daughter yelled out to him, "Daddy! I'm getting out now!" "Oh no you're not... I have a kickboard for you and you need to do more laps!" She scowled at him. I giggled and smiled at him. He leaned in and said, "Now I'm gonna have to explain this to my wife. My daughter thinks I'm hitting on you."

HA!

He Makes Me So Happy...

Seriously, People

If he gets it, anybody can get it.

A Letter to Sarah Palin

Alpha and November, the two leaders of Oz Squad wrote an open letter to Sarah Palin about her role as an advocate for people with Ds, and specifically her willingness to give some people a "pass" when using the word "retard." The goal of this letter is to get as many people as possible to "sign" the letter by leaving a comment saying they support the letter. Subsequently, the Oz Squad will contact Sarah Palin and ask her to read (and hopefully respond) to the letter.

Regardless of your politics (the letter specifically omits politics, as the Oz Squad does not take religious or political stances), I recommend you at least read the letter. And if you are so inclined, you can leave a comment in support. The Oz Squad requests simply that any comments not insult Palin or politicize the letter.

And if you are wondering, yes, I am a member of the Oz Squad.

Here's more about Oz Squad if you are interested:

We are an elite group of active, compassionate bloggers dedicated to educating the public about Down syndrome. We aren't here to bully or whine, and we aren't pushing a political or religious agenda. We're simply here to take a stand whenever we encounter something cruel or insensitive or inaccurate about our children, brothers, sisters and friends.

Eat Some Crustaceans - Or Just Donate!

If you are local, please contact me if you'd like to buy tickets to the Saving Sofia Crab Feed & Silent Auction on Friday, 19 March. If you're not local, or not in to all-you-can-eat pasta and crab feeds, you can still donate to Sofia's Adoption Fund by clicking here. Be sure to write "Sofia Sanchez Adoption" in the comment section. Let's help Jen & Hector bring little Sofia home!