08 March 2010

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!

9 comments:

  1. Great story Lisa!! I know it didn't start out the way you had thought but that conversation ended up being wonderful and thank goodness you introduced yourself and got to meet him and his daughter!

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  2. Oh Lisa, thanks so much for sharing this. Remind me to share a story with you about a mom who approached me before Mason had his surgery ... I was so thankful that she approached me, even though at first I was a little offended ... I'll never forget her ... and she helped me think of things that I would have never thought of that ultimately helped Mason and your story warms my heart not only because your new friends are super awesome, but because of the human spirit and love.

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  3. Oh my gosh. What a lovely expereince that must have been. I mean in the first few lines...I was thinking "oh no how uncomfortable". However it sounds like it turned out to be amazing. I have approached a couple of parents and you never know how it's going to go. Pleasantly I have been really happy even though it is hard to know what will happen at the start. I think if we take the risk we can get great rewards. Way to go.

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  4. Wow Lisa, thanks for sharing this amazing story. I couldn't agree with Sasha more, if we take risks, we can get great rewards....isn't this what our children teach us every day?! I believe that people come into our lives for a reason (maybe sometimes just crossing our paths for a few minutes), rather than happening by chance. I can tell through your words that this left an impact on you (in some strange way, me too). What a powerful story that man had to tell. And it's impact is something you (and your readers) will always remember! BTW, I would love to hear about Sheridan's water therapy!! I just did a post about Landon's water therapy and I would love to share notes/experiences!!

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  5. great story about your conversation with the man and how well his daughter is doing - but the story about her getting kidnapped scares me to death... hopefully we can teach whitney, when the time is right, to protect herself if anything that did not seem right ever happened!!!!! hopefully she will be doing well enough that no one would ever want to take advantage of her!
    glad sheridan is doing so well - water therapy sounds like it is great :)

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  6. Amazing story, Lisa. I'm still teary over the attempted rape and how she got out of it. Thank God she had the courage to speak up, even if perhaps she really didn't know his intent to hurt her. He IS a trailblazer... his comments on not labeling his daughter shows his fiery, protective spirit, too. I love that. It was nice to read the positive things he had to say about men w/ Ds, too. Our guys are little trailblazers, themselves. I just know it deep down.

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  7. Wow, whan an experience. First, I cringed, then I smiled, and, finally, I was near tears. Thank you so much for sharing.

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  8. Very cool story! I've never been one to walk up to a stranger and start talking to them, but since Claire's arrival, I've found myself compelled to reach out to other parents.

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  9. Can you contact me offline and tell me about your water therapy? I'm in southern California and extremely interested in it, but no one down here seems to know anything about it. Thanks!

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