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.

I did it again!

I changed my blog theme…I know, I know. A person could get dizzy with all the blog-theme changes I’ve been doing here, lately. Which is weird, for me. I’m not a person who rearranges furniture, or who switches the pictures around. And I realize I’m in the minority here: most of you pick a theme and a look for your blog and stick with it.

So, what’s up?

I think it’s because this is the 1,000th day of low-hanging clouds and gray freezing rain and the dust bunnies in our house have been around so long, they all have names. I think it’s because changing my blog is a way to feel like I’m doing creative work, even if I’m really not. And I think I keep hoping a little change, maybe here, maybe there, will bring inspiration.

I’m gonna try and stick with this theme, for a while. It’s the very first one I began with, many moons ago. And the photo is one Conny Wenk sent me: I don’t know if I told you this story, but it’s why I love it so well–Conny was on a trip to Italy with Juliana, reading my book. She noticed the irony: in Holland (metaphor) and in Italy (real life) reading Road Map to Holland. She took a photo and shared it with me.

Tom and I had dreamed of going to Italy together–that was before twins, before preemies, before Down syndrome. And for a while, I thought that dream had ended. But Conny tells me the people in Italy are lovely, and have no trouble seeing past Down syndrome, to the heart of a child. So, I’m dreaming again….

And that’s what this header image does for me. It reminds me to keep dreaming.

Mamas making a difference

Recently, I had the opportunity to read Laura Shumaker’s book,  A Regular Guy:  Growing Up with Autism. a memoir about life with her autistic son, Matthew.  It’s an honest and open look at the struggle to obtain a diagnosis (which is something I’d never experienced–I’d always thought the black-and-white pronouncement of trisomy-21 was exceptionally harsh; now I’m beginning to see it as a mixed blessing) and especially, the decision to place Matthew, as an adolescent and later, young adult, in an out-of-state residential facility/school.  It’s a story many parents are reluctant to tell–about how they came to the point in their parenting where they felt out-of-home care was the best option.

Another mama I’ll point you to is  Ellen of the blog, To the Max. In this post, Ellen answers the question, “What I wish I’d known” about life with her son Max, who had a stroke at birth.  She got me thinking about how I might answer that question for myself, and my answer surprised me with its simplicity:  I wish I’d known we were all going to be okay. 

And of course, we are.

(Also?  I’d tell myself the Legos will never, ever be completely picked up, so forget about it already.)

I’m wondering, for myself and especially for all the new moms and dads out there, what do you wish you’d known, right from the start?

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!