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?”

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!

Think of it as a bookmark in my life

Disclaimer:  This is a very disorganized post about reading, learning to teach reading, Avery, potty training, excellent books, synchronicity, and some especially sweet moments I don’t want to forget.  Here we go!

Several months ago I received an email from a mom asking me about how we taught Avery to use the potty.  I told her what I knew, then, which resulted in what I feel now was a very poor answer.  I told her that we did all the things we’d done with his brothers:  watching for readiness, making a big deal out of it, rewarding him with lots of praise and love.  Too, we did some practical things, like getting him a little potty of his own that fit his tiny hiney (Target had one that we loved) and we made sure to ask him if he needed to use the potty, especially in new places or situations.  And by we I mean me, and Tom, and Bennett, and Carter.  Avery’s potty-learning was truly a family affair.

So those are the things I shared with the mom, whose son was 8 I think, and she was still trying to find the way to achieve this skill with him.  I could have, should have assumed that she’d already done all the things I mentioned, because really, who wouldn’t have tried those things first?

About a month ago, we had a major regression with Avery’s potty.  (I feel like I’m on very shaky ground here, revealing too much about Avery’s personal business, but I will forge ahead because I have a reason–I learned something I wished I’d known earlier, and maybe by sharing it, it will help one of you.)  We all became very cross with him, and disappointed, and I think we sort of believed that if we made it unpleasant enough for him, he would go back to using the potty.  Well, it didn’t work.  In fact, the opposite happened.  Avery became even less interested in using the potty and began avoiding the bathroom all together.

About this time I’d been reading Patricia Oelwein’s excellent book, Teaching Reading to Children with Down Syndrome, which is not a book I say much about in Road Map simply because I didn’t know about it, yet.  The whole beginning of the book isn’t even about teaching reading:  it’s about how children with Down syndrome learn.  One of the things she mentioned was a learned helplessness, based on a fear of failure and a history of low expectations.  As soon as I read about it, I knew it was what had happened to Avery.  We’d made the potty experience so unpleasant for him that he simply decided not to try it any more.

Well.  Again, I was humbled, with regard to my most excellent parenting instincts.  Or not.  Gah.

So I explained to Tom that we needed to build Avery’s confidence in the potty department, and that no one was allowed to say anything negative, only positive, encouraging feelings were to be allowed in the bathroom.  And we went back to square one, with the tiny potty again, and the love and attention, and the new (again) underwear, this time Scooby-Doos. 

It worked.

I felt very grateful that our early potty learning had been a positive experience, that we’d stumbled across it really, and that we could go back to that and reset our course. 

And I realized that this is probably going to be the way forward with Avery:  that he will need to feel safe enough to take risks, and make mistakes, in order to continue to grow and learn.  Especially as the things he’s learning become increasingly complicated, and in many ways, foreign.  For him, he has to take a lot of this on faith–he has to believe he can do it, and sometimes, it will be my job to believe enough for both of us.

We’ve been doing the Dystar book Teach Your Child to Read in 100 Easy Lessons (both little boys) and the BOB books (both boys) and Avery also has supplemental work with signing, flashcards, and the Love and Learning program.  It works best if Bennett does his lessons first while Avery is in the room; Avery then expects to do everything Bennett does, and he copies him.  So I have two sets of books, one for each boy.  Avery is very aware if I “short” him or do anything different; he’s an excellent observer.  And I’ve found it to be true, what many of the studies are saying:  reading is actually helping Avery speak better, and more. 

When we do the flashcards, I read and say the words, then Avery says or signs them, whatever he likes best.  He still prefers to sign “baby” and “thirsty” and “bird” and “airplane,” also his first sign, “fish.”  When I read and say, “hurt,” he always says “ow,” and when I read and say “friend,” he always says, “Mom.”

May I never forget that friend, to him, is me.