Something to Watch this Weekend

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Photo credit: http://www.missyoucandoit.com

If you have HBO On Demand, do yourself a favor and watch a documentary that will capture your attention and melt your heart. If you click on HBO and go to “Documentaries” then “Feature Films,” you’ll find a movie called Miss You Can Do It.

You can watch the trailer here: Miss You Can Do It Trailer

I’m not usually into movies about pageants, and when my husband and I sat down to watch it, I thought, “I hope this isn’t too pageant-y…or too depressing…” Usually, when we do video date night (because you know we’re not going out to the movies), I try and find something funny and light-hearted.

So, for this one, I took a chance. And, yes, I bawled my eyes out–but in a good way! I highly recommend it, for parents of typical children and those with special needs.

I wish that I had been more interested in special needs before I had a child with special needs. Does that sound strange? I feel like I was incredibly closed off from that world, and now I realize that I could’ve gotten involved a long time ago.

If my daughter didn’t have special needs, would I have watched that awesome pageant documentary?

Or this one? Monica and David

Or this one? Best Kept Secret

I can tell you the answer. I probably wouldn’t have watched any of them. I don’t think that makes me a bad person. I think we’re drawn to what we know. And I didn’t know ANYTHING about special needs until July 2011, when Emmy was born.

I know that Oprah loves this quote by Maya Angelou: “When you know better, you do better.”

In my case, I think that it would be: When you know more, you do more.

I’ve stretched my boundaries because I had to. But I’m so glad that I had to because I never would’ve seen what was on the other side.

Over the past few years, I’ve met a fair amount of people who have dedicated themselves to special needs work without having a child, or sister, or brother with special needs. They just did. For various reasons, or perhaps for no reason at all, they wanted to help. I am always touched by those stories. I think I’ve asked almost all of our Early Intervention therapists, “So how did you get into this?” Where did that all start? One therapist told me that, as a teenager, she was helping a friend of the family with her autistic child. I can’t tell you how much that impacted me because I thought back to what I was doing as a teenager and, while I was a good girl :), I wasn’t involved in anything meaningful on that level. I didn’t stretch much out of my comfort zone. One of my goals is to open my children up to a world beyond what they can see. There are many people out there, each with his/her own story to tell. It makes me feel good to finally open my eyes to all of those stories, not just my own.

The Best Line of Poetry…Ever

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We went to a Williams Syndrome Conference over the weekend, and we had a fantastic time. (Thank you to everyone who organized it and to all of the speakers!) It’s bizarre how, after 2 years of completely immersing myself in “all that is WS,” I still have so much more to learn. I’ve certainly come a long way from the confused mom who received a diagnosis that she’d never heard of before, but there’s still a long way to go. We haven’t even had our first IEP meeting with the school system yet, and I’ve heard those can be a doozy!

My favorite session at the Conference was a panel of 4 adults (1 man + 3 women) who have Williams syndrome. I was so moved by what they had to say and, also, by how much they’re accomplishing in their lives. In the beginning, I worried that having WS would be so limiting for Emmy, but there are adults who live completely independently, hold down paying jobs that they enjoy, and drive cars. I think there are a lot of misconceptions about WS and its “limitations,” and it was inspiring to hear these adults focus on their many abilities, not their disability.

And then I heard something that floored me — the best line of poetry EVER.

One of the women was talking about her best friend of 14 years, who is “typical.”

What I learned early on is that people in the special needs community (and educators, therapists, etc.) don’t use the word “normal” to describe someone who doesn’t have special needs. Because: (1) The opposite of normal is “abnormal,” and it’s cruel to call someone “abnormal.” (2) What is normal anyway??? I mean, really. Can we even define that word? I certainly don’t think I’m normal…

If you use the word “typical” instead of “normal,” I promise that you will impress all your friends. 🙂

So this woman, who I immediately adored, was talking about her typical friend. And she said: “She sees me as she sees herself.”

I swear that is the most amazing line of poetry I’ve ever heard: “She sees me as she sees herself.”

And it got me thinking: What if we were to see other people as we see ourselves?

The dad rooting for his son even though he’s on the other team…

The cashier who is taking her time even though you want to get home…

The person who is fishing for his MetroCard before getting in the subway turnstile even though he’s holding up the whole line…

The person with special needs who wants to talk to you…

What if we see others as we see ourselves?

What if we were to approach each day looking at strangers and thinking: You know, we’re a lot more alike than we are different…

I’ll give it a go. Why not?

And I’ll close by saying that I am so touched by people who truly befriend those with special needs. It’s easy to judge someone who is different. It’s much more genuine and beautiful and human to connect with that person and find the ways in which you are more alike, than different.

I’m Counting on You

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One of the many, many things I love about Charlotte is how she drops phrases that I’m not expecting. I remember so clearly holding this little baby in my arms and wondering how she was going to act when she was older. I would try and picture her–in the future–sitting down to eat dinner with us or sharing details about her day, and I would come up blank. I wasn’t able to envision this baby any other way than snuggled up in my arms–sleeping, crying, or gazing curiously at her surroundings.

Well, at 3.5 years old, she has proven that she has a mighty personality. She’s independent, witty, observant, and has a sharp memory. She picks up on phrases from her teachers or from us, and she waits for the right time to use them.

Yesterday, I was driving her to school, and she mentioned that she wanted me to read a particular book for story time before bed. Still tired from waking up only an hour before, I said, “Ok, I’ll try and remember.”

She got very serious and replied, “I’m counting on you.”

I instantly perked up. She’s counting on me! I better deliver the goods.

I could picture her teachers using that same phrase, and I love that she tucks these words away and brings them out at the perfect time. She’s a little adult in many ways–an old soul.

Of course, as soon as I got home, I found the book and dutifully put it on top of her toy chest–in preparation for story time that night. You can count on me, Charlotte.