Throw It Away

Sheridan wasn't too sure about Santa... he kept making his sign for "throw it away" - I think he wanted me to throw Santa away :)

You're Allergic to What?!

You have to check out this blog written by my good friend Liz. See, Liz is allergic to most foods. Literally. And now she blogs about her journey finding foods that won't make her sick, and still taste yummy.

Given that people with Down syndrome are at increased risk for Celiac disease (and many of the parents who visit my blog have a child with Celiac disease) and must avoid wheat/gluten, or perhaps you're one of millions of people who cannot eat dairy, or perhaps, like Sheridan, you are allergic to soy... whatever your food "issue" might be, I thought you might find Liz's blog very informative, helpful, and fun. Because that's just who she is :)

Happy Thanksgiving!

I can't think of anything for which I am more thankful...

Last Call

Just a friendly reminder that if you would like me to include your Ds Website feedback, pictures, etc. to the Centers for Disease Control and Prevention, please send it to me via email or as a comment
no later than this Wednesday, 25 November.

Click here to see my previous post with all the details :)

We Can Make a Difference! Let's Help CDC!

I have (what I believe is) an amazing opportunity for families who have a child with Down syndrome. The Centers for Disease Control and Prevention (CDC) has agreed to let me compile detailed feedback on their Ds Website from parents, and they will use that feedback as they work to re-create the Website!

I would LOVE if you would consider giving me detailed feedback so that you can contribute to the new Website. And feel free to share this with any family (blogging and non-blogging alike). The only thing is that I need your feedback no later than Wednesday, November 25th.

So, for the details...

FIRST, SOME BACKGROUND

When Sheridan was born in August 2008 I went to CDC's website (they have a center called the National Center on Birth Defects and Developmental Disabilities so I thought CDC would have good information for us).

Unfortunately, at that time, CDC did not have a page devoted to Ds. So I called them and told them how disappointed I was that CDC's Center on developmental disabilities didn't have any useful information for new parents with a child diagnosed with Ds.

A few months later they put up page, but it was not clear if they had talked to parents about the content. Since then, I contacted CDC and have been working with them to do the following:

1. CDC agreed for me to lead an effort to get feedback from parents who have a child with Ds

2. CDC promised me that they will actually use the feedback that I compile from parents - because quite frankly I don't want to waste anybody's time.

3. I had to convince them that I wasn't going to send them a bill at the end of this process. I am completely volunteering to do this. I wont receive a dime (or even a piece of candy) for doing this. So rest assured I'm not doing this for the (lack of) money.

HOW I WOULD LIKE YOU TO HELP

Simply read the Website and provide the feedback I request below. Before we get to the specific feedback I'd like from each of you, let's go over...

SOME GROUND RULES

1. Always keep in mind that CDC is NOT an advocacy organization. They are a public health institution and their mission and vision can be found here if you want to check it out.

2. Provide feedback that is as specific and detailed as you feel comfortable. The more detailed, the better I can give them guidance from parents' perspectives.

3. If you believe a claim is inaccurate, or you think a new/different claim/information should be added, be specific as to why (and if possible, provide a citation - like a reference to a published research article - so you can show CDC evidence and be more likely to get the change) - but not all changes will need research to back it up. So just do your best.

4. BE HONEST. If something is helpful, or if something is really offensive. Say so. And say why.

5. Think about the usefulness of this site for you now, for those in your family/community you want to educate.

6. Think about this Website from the perspective of it's two most likely users: health care providers & parents with a new diagnosis

7. If you are so inclined, feel free to copy and paste the text of the Website into a document/email and give point-by-point feedback. I'm happy to work with such detail, so don't feel like it's too much. On the other hand, this level of detail is not required, so don't feel bad about sending my some basic feedback.

8. I'm being redundant, but just to make sure I'm clear:

a. there is no right or wrong answer here - everything you have to say is valuable!

b. CDC is not an advocacy organization, so just be prepared in the event they don't take all of our suggestions.

9. CDC does not have a lot of time to revamp the Ds Website; therefore, I need your feedback no later than Wednesday, November 25th. Sorry... I don't have much wiggle room :(

10. Your feedback - any and ALL comments you share with me - will be completely anonymous. Your feedback will be in NO WAY connected to your name, blog, child, etc. Ever. I am compiling all comments/feedback into a report that will not contain any identifying information (please note in the instructions below that I do request some basic demographic data so I can tell CDC some basic things about the group of people who gave feedback - see below for more details on this).

11. Please send your feedback in one of two ways:

a. if you'd like to send really detailed feedback, or if you'd like your feedback to be private, please send it to me via email:

geneticallyenhanced [at] comcast [dot] net

b. or you can simply post your feedback as a comment to this post.

OKAY, NOW FOR YOUR SPECIFIC TASK

Currently, CDC has only one page devoted to Ds. Click here to access it.

1. Please read through the information on the website and provide feedback on the content.

How did it make you feel and why?
What did you like about the Website?
What should be changed and why?
What should be deleted and why?
What should be added and why?

Just give me as much detailed feedback (both positive and negative) as you can about the Website.

2. CDC agrees that they not only need to have a main page like the one they have, but they also need to provide links to a separate page for parents (likely NEW parents) and health care providers. Sooooo, that being said:

a. What kind of information would you recommend CDC put on the parent page?

b. What should they put on the health care provider page?

3. When you send your feedback to me, please also include the following information:

a. your age
b. your sex (male or female)
c. the age of your child with Ds
d. what state you live in
e. your race/ethnicity

I'm collecting this information strictly to be able to describe the ENTIRE GROUP that sends feedback (as a hypothetical example, I would be able to tell CDC that 65% of the people who provided feedback were women, and I'd be able to tell them that people from 20 different states gave feedback, etc.).

4. CDC has agreed to add pictures of people with Ds, and asked me to create a small library of images that they can use. If you are interested in having your child's picture on CDC's website, I will need a high-resolution image (or 2 or 3, however many you are willing to share - and siblings can be in some if you wish) and a completed photo release form. Click here for the form.

You should send the images and the completed, signed form (scanning it is just fine) to me via email:

geneticallyenhanced [at] comcast [dot] net

If you are not able to scan the form, you can send it to me separately by mail, just ask for my address. DO NOT send it to the address on the form because it will NEVER get to the right people!

THAT'S IT!

Please note that you should feel free to give feedback on everything, just one sentence, whatever you are most comfortable with. And keep in mind that once you start, you are not obligated in any way to continue. Just do what you can and what you feel most comfortable with.

Remember, feel free to share this with non-blogging families in your area. I'm happy to get feedback from as many people as possible!

I will share the results of the feedback on my blog when I send it to CDC. So, you'll get to see what I send to CDC!

Thanks for considering my request... I really think we can make a big difference here!

Anybody in Chicago?

I will be in Chicago next weekend for a conference. Anybody out there in Chi-town? If you are in Chicago and want to get together. Leave me a comment and we'll chat to see if our schedules align. I would love to meet some more families!

And, no, Sheridan will not be with me. I know this seriously diminishes your interest in meeting up, but I promise I'm nice and worth getting to know :)

Boo!

Just a few pics from Halloween...

Sheridan's sitter carved a pumpkin to look like him - notice the tooth!
So freaking cute!

And he was mesmerized by the hollow pumpkin head.

We decided to take a few pictures in the leaves...

He liked trying to pull and tear the leaves apart...

He just loved playing... I raked everything in to one big pile and let him loose.

One of my favorite pictures:

Oh, and, Mr. I Want to be Mobile

Chillin' in the leaves - and chewing on them.

Trying to take control of the camera yet again.

Kisses for Daddy.

Mr. Bear headin' out for the night.

I love the look of thrilling excitement and complete fear all rolled up into one.

Don't eat Daddy's head...

This is my favorite picture:

Steppin' for Sheridan

So, I'm a couple weeks behind but wanted to do a quick photo display of the amazing walk we did to raise money for the Down Syndrome Information Alliance and raise awareness of Ds in our community. This year, our walk was the Step Up for Down Syndrome walk (many places like Denver, Kansas City, Memphis have "switched" the title of their walk from Buddy Walk to Step Up). Anyway...

This was our first walk. Ever. We were really excited. I was hoping to get a big team (I have a big family) and raise $1,500. Also, I was really excited to spend a day celebrating Sheridan, his beautiful friends, and the entire Ds community.

So let's get to it...

Our team name was Genetically Enhanced. No big surprise.

I tried and tried and tried to come up with some clever team name that included "Sheridan" and used alliteration but came up with nada. Nothing.

Sharing with Sheridan.

Lame.

Sheridan the Sherpa.

Not really.

So, I told everybody that "Sheridan's Squad" was going to be called "Genetically Enhanced" and just went with it. I made t-shirts for all of our immediate family + all the children who walked with us. It was really cool to see everyone wearing shirts that looked like the blog (and immediate family members had the blog URL on the back of the shirt - I'm not ashamed I made them advertise!), and everyone else (for the most part) wore black shirts.

Sheridan and his Nonna playing with balloons before the walk.

Uncle Nathan came all the way from Los Angeles!

Proud Daddy

Playing footsies with Sarah before the walk

Brian and Connie brought the whole family... thank you so much!
(notice the littlest rockin' the Zepplin tee)

Kimo and the whole family were there
(and Sheridan didn't even cry at Kimo)

It was a PERFECT, beautiful fall day
(that turned quite warm - 80 degrees!)
I love how happy my mom looks here :)

So many people!

And look who Sheridan found during the walk...
Little Miss Thing herself - with a tutu and crown no less! :)
And he made Becca carry him the whole walk.
Gary pushed an empty stroller the whole time.

It was the first time we'd seen Gabby since her open-heart surgery. I was so excited to see her and her whole family. I missed them. Here's Gabby leading her court (her team name was Gabilicious, by the way - Sheree knows how to do something creative with the name!)
And, "Hi!" to Rachel and Ryan in the background :)

Sheridan loves his Becca.
I don't know what I would do without her. (She comes over to our house and watches him 3 afternoons a week so I can work part time from home, and as you can see he absolutely adores her)

Riding on Becca's shoulders...

Sweet Joaquin fell asleep during the walk...

And so did Sheridan...

But he woke up just in time to hang out with his buddies.
I'm telling you, this is the cutest gang of babies in SacTown!
Gracie, Joaquin, Joey, Gabby, & Sheridan

Sheridan wasn't too sure about the whole thing at first,
but couldn't resist Gabs' tutu!

And he kept an extra close eye on that Joey.
Joey was workin' out doing pushups the whole time.
He's a bit of a bruiser ;-) so Sheridan had to watch him at all times.
But notice that he never let go of Gabby's tutu!

There's that Joey. I'm watching you, man!

And John Michael joined the gang! I was so excited to see him, too.
I hadn't seen JM or Monica in a long while. Too long.
Our babies are so beautiful.

I think Sheridan had a hard time letting Gabby (and her tutu) go.

And look at John Michael WALKING! I was so proud of him, and so happy for Monica!

Joaquin's team "Walking for Joaquin" (another very clever team name!) had an amazing banner!

Team Gabilicious took the "Most Team Spirit" award!
(it was the crowns)

Sheridan enjoyed his lunch in the park with his 43 (!!!!!!) teammates
who helped him raise $1,585 (!!!!!!)

Oh. And I made black and white cupcakes for our team - yum!

One of the best parts?
Sheridan and I got to meet an expectant mom who is pregnant with a baby girl who has Ds.
It was an emotional day for her and her family, and I am in awe of her courage and spirit.
We love you, Amy, and can't wait to meet baby girl on the outside!