National Down Syndrome Congress Convention Comes to Kansas City!

We are so thrilled that we were able to travel to KC for the national convention this year! We met up with some great friends, old and new, it was so refreshing to chat with others who share the same daily joys and struggles as we do! My husband was teasing me about some of the girls I've met online. We are in touch almost daily through our message board and we help each other through the daily struggles of raising a child with a disability. When we finally got to meet he told me we acted like we've been friends forever. The truth is it feels like we have. We know each other so well, one would never guess it was our first time to meet in real life!

Of course there were some new worries I developed while gone. I learned so much at the workshops and I focused my time in classes the revolved around speech. The speech guru for persons with Ds was speaking both Friday and Saturday, so of course I was there in the front row! Libby Kumin did a great job. She talked a lot about something called apraxia though and I'm thinking Chelsea fits some of the red flags. It's a language processing disorder, and while she's still young to put a label on her like that, the beautiful thing is, starting a different kind of therapy for apraxia can only help. It certainly won't hurt. We have two speech therapists one private and one through the county, so we will talk with them this week and see about doing some evaluations on her. A couple of things that got me thinking apraxia are her lack of sound production. She hardly babbled until after her first birthday and now that she does babble and "talk" all the time, it's generally the same sounds, ba and da. She's only used the consonant 'm' a few times in her 18 months of life! That's kind of sad for her 'mama'!!! I know it will come though.

Another concern I have is that although she is signing 25 or so words, her signs are still difficult to differentiate. We've been signing since birth as most of you know, but still, 'eat, drink, mom, and dad' all look like the same sign (her hand to her mouth). Also, 'play, tree, all done' are very similar, 'phone and night night' are the same, 'I love you and baby' are almost the same too. It's wonderful that she is communicating with us, this is priceless, it's just becoming frustrating when we don't know exactly what she's telling us. This is limb apraxia. She's not aware that her hands and arms aren't mimicing us. She thinks she's doing exactly what we are doing when we are signing. The first thing I'll do of course is spend more time in front of the mirror! The challenge with that though is she doesn't realize she's looking at Chelsea when she looks in the mirror. A couple of weeks ago I put lipstick on her nose while we were playing in the mirror and she touched the mirror and didn't even attempt to wipe it off of herself! Cute, but not exactly what I wanted her to do! Enough speech talk now, on to the pictures!

Some of Chelsea's Buddies:

Jamie:

Cori:

Chris Burke (aka, Corky!):

Cason (and look at Chelsea's cheesy face!):

And finally a group shot! These are some of our 'virtual' friends who aren't soley virtual anymore!

Need I introduce these friends?


Chelsea really hit it off with this little girl Cori. She's got a big brother, Jamie w/ Ds. Cori just followed Chels around all weekend and whenever we would bump into them at the hotel, Cori's beautiful little eyes would just light up and she's say, "Chelsea!" It was just precious! I happened to catch this pic as Chelsea dove in for a hug and they both tumbled over!

This is a friends hubby who sat next to Chelsea, they really hit it off, in fact before we left the restaraunt, Chelsea was digging through his wallet! What a smart young lady, I've trained her well! In this pic they were signing 'more' b/c she wanted more of his spaghetti. They so graciously shared with her. I wonder if they even got any to eat themselves.

At the Italian restaraunt Saturday night, "pu, pu, pu" (up!)

Smiling for the camera:


I love this picture. It reminds me of the saying, "what's an extra chromosome among friends?" There was a huge dance Saturday night and everyone was dancing together. I don't believe I've ever seen a better group of dancers either. This was one wild group! I only hope Chelsea will belong to a group of friends like this when she grows up.

Jamie dancing the Macarena!

'Hey Mayson, are you awake?' (this was 11:30pm!)

'Maybe I can pull the bows out of her hair since I've already pulled mine out today.'

'Let me out so I can have a better look!'

'Hey Mayson?!!!'

'Hang on, I hear music, I've got to dance.'

'I've got a secret to tell you.'

'Finally, she's awake! Hey are we wearing the same outfit?'

'TACKLE!!! oops, I didn't mean to make you cry Maymay!'

'I'm hot, time to take this thing off!'


Check out my two precious babies!

Me with Mayson and Chelsea with Amy (Maysons mama).

I was just having fun with this one, just one of those moments I happened to catch!

***And believe it or not, that's not Chelsea, it's Mayson!