Talking

Maddy's speech has been one of her main areas of delay. I've spoken about her issues here many times before, starting in this post nearly a year ago (that's half a life-time for a 2 year old!) and in greater detail in this aptly named post, "Worry" which was subsequently followed by "Communicating" less than a week later. Speech for Maddy has been a bit harder - mainly due to the cleft palate. Her "receptive language" (that is, the amount of language that she understands) is pretty average/age appropriate. Since her surgery, her vocabulary has been improving exponentially. Currently, her main issue is with articulation (ie, what she does say is very difficult to understand - even for people who are with her all day, every day). 

I know though that she will "catch up", but it will take more practice and speech therapy. We have a really nice therapist who we have been seeing weekly, and sometimes I have to remind myself that Maddy's cleft surgery was only 4 months away - so really, she's only been talking for 4 months. When that is considered, she's doing awesome!

I shot this little video in the bath a week or two ago and thought I'd share it to show you all what her speech is like these days:

(transcription)

Me: Can you sing "Twinkle Twinkle little star?"
Maddy: Twinkle twinkle... HOLD!
Me: No, you can't hold - you're in the bath.
Maddy: Hold please...
Me: No, you cannot
Me: Sing twinkle twinkle
Maddy: Baby!
Me: Twinkle twinkle... oh, Baby

Maddy: Bath!
Me: Ok, Baby do twinkle twinkle.
Maddy: (singing "Twinkle Twinkle") - Again!
Me: Again? What's baby going to do now? Maddy? What's baby doing? Oh - bye bye baby!
Maddy: Bye bye baby! Bye bye baby! Bye!

Meet paralympian, Grant "Scooter" Patterson

I love reading stories about other people with diastrophic dysplasia and the things they have accomplished. It's a rare condition and not easy to find stories of people specifically with this form of dwarfism. Two years ago, I first read about Chris Errera, a pianist who has since gone on to appear on The Rosie O'Donnell show.

I first heard of Grant "Scooter" Patterson when Maddy was still in NICU. Prof Sillence brought a few photos of people with different forms of dwarfism who had been patients of his. Scooter was one of them. I didn't realise at the time that I would also read about him in the news paper.

A year or so ago, I stumbled upon this story of Scooter I copied the link to a draft post intending to share it here but never got around to it. It is only because the paralympics are on at the moment that he's come to my attention again.

A dear family friend (Hi Aunty Susan!) was talking to my parents and mentioned that she'd seen Scooter on TV and thought that "diastrophic dysplasia" might have been the same thing that Maddy had. My dad looked him up and sent me this story, complete with a video!

I love how Scooter inspires me to keep Maddy fit and active - particularly with swimming (as a low-impact sport, it is perfect for someone with joint issues). Who knows, one day we might see Maddy in the paralympics too!! Why not??

(an interesting side-note: Scooter's next event in London is the S4 100m Freestyle. Also representing Australia in the same event is Amhed Kelly, the brother of the X-Factor contestent, Emmanuel Kelly.)