Some things I didn’t know…

I didn’t know that the actor, Ashton Kutcher, is a twin, or that his twin brother Michael was born with Cerebral Palsy.  I didn’t know that Kutcher, who is mostly known for his lighthearted acting roles, could be thoughtful and introspective, as he was when he said these words, as part of a speech he gave in Iowa on Saturday:

My brother was born with cerebral palsy and it taught me that loving people isn’t a choice and that people aren’t actually all created equal,” the actor said, fighting back tears. “The Constitution lies to us. We’re not all created equal. We’re all created incredibly unequal to one another, in our capabilities and what we can do and how we think and what we see. But we all have the equal capacity to love one another, and my brother taught me that.

One of the tricky questions about Down syndrome

And by that I mean:  supplements.

Recently a new mom to a baby with DS wrote me and was wondering if the thoughts I shared in my book about supplements, such as Nutrivene-D and others, were the same.  

A lot of things have happened since I first was thinking about the subject of supplements, when Avery was just a baby.  Some things had me leaning toward trying it; others had me shying away from the idea.   Continue reading “One of the tricky questions about Down syndrome”

A choice

The post about doctors has gotten me thinking (again) about the words we choose, and how they have the power to shape our feelings about a person, an event, or even a diagnosis. There’s an excellent post up at Bridget’s Light about this very topic, I encourage you to check it out.

Thank you, Lisa, for the link!

Fun stuff to share…

Jordan, who blogs at The Wonderwheel and also happens to be a Speech-Language Pathologist, has created a new blog especially for families interested in all things communication.  Go here to check it out.

Kristy Colvin, founder and president of the IMDSA, has come up with an amazing way to raise awareness, have fun, and celebrate World Down Syndrome Day (3/21) that she’s named “Genes Day.”  You can get more details from her blog, Mosaic Moments.

And finally, are the winter blahs getting to you?  What better way to pass the time than talking about books!  The book club discussion at Downsyn.com is back on, and this week we’re discussing, hmmm, can you guess?  You don’t have to be signed in to read along–if you want to participate, becoming a member of Downsyn.com is very easy.  And if you’d prefer, you can email me your questions/thoughts and I can post them, for you.

Happy reading!

More about speech

Mylie’s Mom asked these questions in the comments, and I thought they deserved a whole post of their own. She writes:

Niksmom said, “Help your child find a way of communicating that is effective and let them develop from there.” Do you all have ideas for doing this? What methods have you found to be helpful? At what age did you child seem to grasp the potential of signing in communicating – when did they really start to take interest in learning new ones in order to be able to communicate their wants? Continue reading “More about speech”

Avery’s words

From a blog reader:
Can I ask you a personal question? Did Avery lose speech he had or did it seem like he was on the way to talking but then got stalled?    

You have shared on your blog that he doesn’t speak much which always made me wonder.  How does a child go from saying a full phrase like, ‘I love you’ to not speaking at all?  If that is what happened, who could blame you for thinking that kind speech might not happen again!  Glad Avery proved you wrong.  I’m sure the waiting and wondering were not easy. 

Wishing you more special moments, 
C.
And this was my reply:
Sure, ask away…
 
I liken Avery’s speech development to swiss cheese.  There are times when it seems as if we’re going good, he imitates sounds and is more vocal, but then there are times when it’s as if we’re starting from scratch.  I have no idea why this is.
And too, he’s never strung so many words together before (as he did when he sang, “Happy Birthday to you.” ) The “ahluvyou” was like a long word, or one word with many syllables.  It was rough, too, but recognizable.  Then, nothing.  For a long time, just one word sentences, and lots of signing.  Until this (the happy birthday song).
 
I really think there’s something going on in his brain, and  I hope researchers can figure out why its happening.  He understands everything, completely, but somewhere in the getting-the-words-out stage, it all gets lost.  I now have the opinion that maybe many of the people with DS who have been diagnosed with learning disabilities are maybe just nonverbal, and they tested poorly as a result. 
 
With Avery, I’ve been down this road before, the doubt-filled road, the worry road, when I was obsessed with his not-walking.  And of course, he did learn, in his own time.  He’s in fact hopping, and climbing, and running, and doing all the things you’d expect a 5-year-old to do.  Not only did he walk, he made up for any “lost” time, too.

So we keep trying different things regarding his speech, and will always keep trying, and it’s my hope that he will achieve the language we hope for him, in his own time.  But his Happy Birthday song was soooo heartening.  It was like a little glimpse into the future, of a day when Avery can talk to us all the time.

xo

Did you receive a prenatal DS diagnosis?

This is a message from Kori Shaw, creator of the Flourish Network for parents:

Right now, I am completing my research for the Down Syndrome Affliates in Action (DSAIA) talk. I’ve been doing a benchmark study on what information and materials women are given when they get a prenatal Down syndrome diagnosis. I’m focused here in the San Francisco Bay Area. I’ve gone to Stanford, etc. There is nothing here! No support, no materials. I’m absolutely astounded.

Would you be able to ask your blog readers about this? Did they receive a prenatal diagnosis? What was their experience? They can contact me through the flourishnetwork.org site, or you can share my email: kori@flourishnetwork.org. Thanks!

I remember several years ago, when my book was just an idea floating around, one of the editors in NYC made the comment that my experiences were probably unique to Montana, and that if I’d lived closer to a big city, I’d have had a better time of it.

Which may, or may not, be true. I pointed out that Dr. Skotko’s (then recent) study about women’s experiences with the DS diagnosis delivery was very similar to my own, and that his study had included a wide range of respondents from all across the county.

And now, years later, it seems we still have work to do. I hope you’ll help Kori, if you can.

A happy birthday song

Yesterday was Carter’s birthday, he’s 10 years old already, much to everyone’s happiness and astonishment (where did the time go?!). The day was filled with all the usual birthday things: a plastic candle holder that plays “Happy Birthday to You” and a candle to wish upon and presents and cards and even phone calls for the birthday boy.

But what I will remember most about this birthday is how Avery went to the toy box, got out his child-sized guitar, began strumming, and ever so softly, ever so clearly, sang the words “happy birthday to you, happy birthday to you.” We all watched him, drawn to the sound of his voice, amazed that he had all these words inside of him, that he’d had them all along, that he was sharing them now, perfectly. I looked at Tom, then both of us looked at Carter, who had the biggest smile I’d seen on him all day, a day already filled with big smiles.

I don’t think there will ever be a better birthday present, for any of us. Or a better way to end one year, and begin another.

Happy New Year, from our house to yours!