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.
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”
The boys are making a Circus in their bedroom. I’m not allowed inside until “showtime.” All I know is, it involves juggling (Carter), Avery in his lion suit, Bennett selling popcorn in brown paper bags (a nickel a piece), and Bailey jumping through the hula hoop.
Wish us luck!!!
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: email@example.com. 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 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.
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?
Or maybe you want to see pictures of Tom and the kids? Maybe you’d like to hear my strange combination Midwest/Montana accent? If so, I share with you my new video:
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!