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12 Aug 08 Is it only a word?

A boycott of Ben Stiller’s latest movie “Tropic Thunder” is afoot here in the US. At the centre of the storm is the movie’s use of the term “full retard” to describe the character “Simple Jack”, an actor who is famous for playing mindless characters.

I’m not going to use this blog to lecture anyone on what words they should use or how they should use them. However, I do have a few thoughts I’d like to share.

On the one hand, “retard” is really only a word, defined in the Oxford dictionary as “make slow or late, delay progress or development or arrival or accomplishment or happening of; backward in mental or physical development”. This is a fair assessment. When used in practical terms, Nicole is mentally retarded. Her disability does slow down her development.

For me, the issue isn’t the use of the word retard, it’s the connotation that being mentally retarded or developmentally disabled automatically makes you ignorant, mindless or an idiot. Having a mental disability doesn’t make you any of these things. I’ve known a lot of “normal” people for whom the word retarded, if I used it that way, would be completely appropriate. Nicole is certainly less ignorant and less of an idiot than all of them.

The mother in me knows that Nicole’s road ahead will be a tough one and the last thing she needs is Hollywood affirming that using a word with this connotation to describe people like her is ok. Nicole is a complex package of many parts, just like the rest of us, and deserves to not be defined solely by her disability. I have many parts of my package that I wouldn’t want used to define me.

What surprises me is that no one at DreamWorks predicted that there would be an adverse reaction the use of this word. The communicator in me says that either they obviously didn’t consult their marketing department or I’m a better communicator than those making tons of cash in the film world.

In support of all those with development disabilities, I won’t see the movie. What I hope is that the proposed boycott will make us all a little more sensitive about the words we use.

15 Jun 08 A haircut can change it all

One thing that’s really struck me lately is how quickly kids learn. As I was having a full-length, adult-like conversation with Marley today, I suddenly realized (with awe) that she’s learned how to talk so well just from listening to others. She can write her name. She’s phoneticizing words. She’s “reading” books. All in just under 4 years. Everyone says that your kids grow up quickly and they’re right.

As Nicole’s grown, I’ve learned to not take the speed of growth for granted. At almost two, Nicole is finally crawling on all fours. She is also just pulling herself up to standing. What I’ve taught myself is to be patient and have faith that she will achieve everything she needs to, eventually.

Then we got her haircut.

Nicole enjoying lunch just after her first haircutIn a matter of minutes, her face, and the way I perceive her, transformed. She no longer looks like a baby. And then I realized that while things take a little longer with her, she’s growing up at a crazy speed, too. She’s mastered many sign language words, she says “I got” when she picks something up, she can point to trees, noses, babies and other things when asked. Tonight, while using her hands to say “all done” at dinner, she actually said it out loud. Several times. Like any two-year-old, we may be the only ones who understand her, but for now, that’s all that matters.

04 Oct 07 Thank you for your Buddy Walk support

We raised more than $3,000 for the National Down Syndrome Society thanks to the generous support of our friends and family.

Nicole thanks you

29 Sep 07 Getting ready for the Buddy Walk

Go walk for a good causeWe are really excited to announce that our family has raised more than $2,500 in pledges for the 2007 Buddy Walk. Thanks to everyone for your generous support! We’re really honoured and appreciative.

We thought you might enjoy this clip, “Go walk for a good cause,” from the Today Show on NBC (aired September 28, 2007), promoting the Walk and why it’s so important.

21 Sep 07 NYC Walk for Down Syndrome

On September 30, Dave, Karyn, Marley, Nicole and Aunt Angela will walk in the NYC Buddy Walk in support of the National Down Syndrome Society (NDSS).

Thanks to everyone who’s already pledged me or Dave. It’s not too late if you want to donate – just visit our pledge page.

Through Nicole’s therapy, we’ve seen first-hand the benefits of the education, advocacy and research funded by the NDSS. We’ve had lots of ups and downs over the past year, but Nicole’s recent achievements have been especially exciting. Thanks to the support of her amazing therapists, Jane and Robyn, she is:

  • Sitting up with increased stability, reaching for and playing with her toys;
  • Eating solid food, including many finger foods, and gaining weight;
  • Displaying the ability to problem solve by moving in different directions when she can’t reach something;
  • Using her hands to speak, mastering the signs for “give me” and “more” and waving goodbye; and
  • Saying “bye bye” (which was also Marley’s first word!)

There really are so many developmental stages that we just assume our kids are going to reach. This past year, I’ve learned about how amazing the human body and brain are and how much we take for granted. Nicole will achieve everything she needs in her own time and on her own terms, just like all kids. Her therapy is ensuring she has the strength and the knowledge when she’s ready, and we’re so grateful to have it.

We’ll let you know how the Buddy Walk goes – it’s sure to be a great day!