Things we love

The days are getting shorter and the air, especially at night, has a new chill to it, which is a long way of saying,  it feels like fall!

Things we’re loving at our house right now: French toast with real maple syryp, Richard Scarry books, Goosie cards, BOB books, garden tomatoes, the reprintable resources from DSFOC,  Melissa and Doug’s play food set, this pretend clock, this zucchini bread, and fresh eggs from this chicken (now all grown up!).

What do you love, at your house?

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”

Believing in Achieving Conference

My weekend involved, in no particular order: 4 plane flights, a blizzard, an unexpected 2 hour detour on a Glacier Charters bus, a wonky computer, a plastic baby doll in my suitcase as it went through the airport security X-ray, a few tears, some excellent questions, and laughter–lots and lots of laughter. Continue reading “Believing in Achieving Conference”

What about sibling relationships?

In the “Ask a question” thread over at the Downsyn.com book discussion, Monica was wondering what I’d noticed regarding the impact of DS on sibling relationships.  I thought the question was an excellent one, and I wanted to share my answer here, too.  Continue reading “What about sibling relationships?”

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.