An oldie, but a goodie

Today I’m over here, with a short essay I wrote a few years ago. It feels as true today as it did then, perhaps even more-so after Avery’s surgery. I hope it rings true for you, too.

Thanks, Louise!


T21 Traveling Afghan

I’m a little bit late in posting this, but in case you haven’t heard, the amazing CJ of Little Miss E has created a fun way to connect families, spread joy, and increase DS awareness.  It’s called the T21 Traveling Afghan, and here’s how she explains it: Continue reading “T21 Traveling Afghan”

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”

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?

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.