Friday, August 23, 2013

Introducing...

Little Miss Supermodel!

Or something.

Close enough, right?

Playette is featured in the newly-released Toys R Us Toy Guide for Differently-Abled Kids. She's on page twenty-eight with the Big Piano and page sixty-seven in the index. (Heads-up: The guide site is not iGadget friendly.)



Someone, somewhere, knew better than to put her on the cover because this mama would have FLIPPED OUT and scared the crap out of Olympic gold medalist Gabby Douglas if we had been in the same room. I would have been hugging her and rocking like we were long lost play cousins. Even better, Nettie and Celie.

Yeah, they made the right decision.

But I digress.

We went to NYC several months ago as a family for the shoot. It was a great experience for Playette. She got to have her hair and makeup done, as well as wear an outfit picked out especially for her by a stylist. She also had a person dedicated to keeping her engaged and moving in accordance with the (awesome) photographer's needs.

I got to sit in the back, be quiet, and watch. As the photos came up on the computer next to me, the assistant would review them to see if they met certain criteria. So it was pretty cool for me, too.

Totally something we would do again.

Here she is as we were leaving. She had picked the hat out herself at H&M that morning and it was used in some of the photos. The lei was a gift from her hype-woman. (I'm sure she has another title, but that's all I can think of at the moment.)

Go grab a toy guide from your local store. They're free! I'll be making my way over to TRU shortly.

Oh yeah. The quote. I realize it's confusing because we are neither Jeanette nor Taylor, but I couldn't come up with something I was ok with being published so I didn't submit anything. I figure it's all been said before and I didn't know how to put into words how Playette has impacted our lives or makes me feel or...

I mean, she's my kid. I love her. I treat her like I would if she didn't have Down syndrome. I just didn't know how to make a quote be whatever it is I thought it should be.

Maybe I just should have said that.




Thursday, August 15, 2013

Poster Child

Some of you may have seen Playette's picture on a poster via my FB page.

Last month, the IDSC selected her photo to help raise awareness and funds for the non-profit, all-volunteer organization that works hard to provide resources for families, friends, educators, and others whose lives are touched by someone with Ds.

We're both happy to support the IDSC and proud of our smiling girl who loves to be the center of attention, all in one endeavor.

Another reason I feel this poster is important is something that I touched upon yesterday. I feel that it's crucial for all of us in the Ds community and beyond to see that the condition does not discriminate. Ds is a completely random occurrence in the vast majority of cases. But something I learned quickly after Playette was born is that many, many people are surprised to learn that African-Americans can have Ds. It seems silly to me, and probably to many of you since you're here and know us, but it's true.

Why is that?

Well, because as minorities amongst another minority, our numbers are small. And then, when you get into cultural differences that are too varied and complicated to explain here, we just don't see one another often represented when we're participating in activities related to those who have special needs. What that can lead to is a lack of participation.

(Of course we all have Ds in common, but please refer to my "varied and complicated" statement above. And, yes, some responsibility does lie with the individual to step out of their comfort zone, but as a parent dealing with so much already, it's just one more barrier. One that the majority of the group does not have to deal with or understand, so please take that into account.)

That's another reason why the IDSC and other groups like the Minority Families Down Syndrome Network matter. There is a need to be met in our community and they are addressing it. If all it takes for one family to decide to come to a Buddy Walk or a Mom's Night Out or a conference is to see my baby girl on a poster and know they're not alone in this world? That people who look like them and can identify with certain nuances exist? Then I'm happy. We all need support and while there are many groups that address overarching issues that impact all of us, sometimes the additional comfort of not having to explain certain things is nice.

Back to the poster...

The caption is perfect for her.

She loves to be around other people and, once they get to know her, they have to love her. She wouldn't have it any other way. This chick is relentless with the winning-over-ness. Trust.

She's an interesting character, full of uniqueness, just like anyone else. I think what boggles most minds in relation to her is that she doesn't fit the mold they have in their mind for a person with Ds. They start out wanting to put her in a box that she doesn't fit into. In truth, I don't think most people with Ds do. Awareness is all about raising these limited expectations and eliminating antiquated preconceived notions.


A small donation can get you your own copy, as seen in the IDSC store. All profits go right back into the org, so don't hesitate to share with schools, doctor's offices, or any other place that could benefit from the knowledge that Down syndrome doesn't automatically equal a worst case scenario in life. I know seeing this could have helped me in my early post-diagnosis days.

Or maybe just get one for someone who needs a big, cheesy grin in their life.

That works, too.

=====Photo courtesy of The Captured Life

The inclusion of a diverse population of people with Ds is a priority, so if you have a child who happens to belong to a racial or ethnic minority group and you'd like them to participate in the IDSC's daily photo campaign, please contact me via the email in the sidebar.

Also, if you are the parent of an African-American child with Ds, send me an email and we can add you to the FB group if you are interested.

Wednesday, August 14, 2013

Storytelling

I can't apologize this time for not writing in so long because, in addition to just being overwhelmed with life, I made a decision. I've been battling for a long time over what to share and how and when. I've shared those feelings before in bits and pieces.

Also, as Playette gets older, do people even care about our little stories? Babies are cute, we all know that, and there's a new crop of 'em all the time, some of them even with extra chromosomes, and some of those with parents who blog. So why read here?

I'll continue to tell our story because of two things. Nothing innovative or particularly aha moment-y, but here goes:

1. I like to write.

2. We have a unique perspective being an African-American family who has a child with Down syndrome. (Look around you. Do you see many others on the web? No. Well, there you go. If you're not a minority, this may not make sense to you, but trust me...seeing someone who looks like you matters. Why do you think so many of us come away from Ds conferences feeling great? It's the same idea.)

So I will carve out time when I can and share what I feel comfortable sharing.

I hope that works for y'all.

School starts here soon. First grade. Can you believe it?!

I can't.

We've had an interesting summer here.

One filled with a beach trip and swim lessons and inclusive camp and birthday parties and therapy and medical appointments and Denver for the NDSC conference and volunteer work and ice cream and friends and family.

There was also a heavy dose of guilt for not handling the last half of the school year the way I probably should have. I've been taking steps to make sure that doesn't happen again. So what if it took me until this week to get to that item on my to-do list.

And then there has also been the additional yooge learning curve of balancing two children when the older one becomes insanely jealous because the younger one is starting to encroach upon the older one's ability space. In a nutshell, crawling and babbling was cool, but all this walking and talking stuff? No bueno.

Oy.

And this is why I run...so that I won't run away.

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Let me leave you with two links that are meaningful to me today. Clicky-clicky and take action if you like.

A community united will achieve great things.

and

Only eight hours to go! Help fund Rachel and the Treeschoolers and get great swag.