Crying during speech therapy

Words aren’t our easiest thing.  By “our” I mean Avery, but I also mean the whole family.  I wrote about it a little bit in my book–the “taxi driver” syndrome, where we all step in to help, but really, we’re just making it harder for Avery to do the things he needs to do for himself.  We’re a bunch of enablers.

Which is why Avery has begun using, with the help of his excellent speech therapist, an AAC.  He’s using the LAMP Words For Life app on an iPad.  He’s getting quite good at it, which brings me to the tears part.

As I was trying to explain to our wonderful speech therapist why the AAC would never really work, about how it was going to cause all these problems, I started to cry.  And then I was so embarrassed I lost my train of thought and just sat in the little chair in the media center of the school, which is where we go for speech therapy, trying not to cry more.

We eventually got it all figured out–by “we” here I mean the therapist, Avery and me.  It became clear that the person with the problem with the AAC was me, and that it was a problem because it represented a time, some time in the future, when Avery wouldn’t have me around to help him navigate the world, wouldn’t need me around to help him.

And that thought overwhelmed me.  I mean, wasn’t that my biggest fear, back when Avery was a baby?  That he wouldn’t have a big, beautiful life?  And now, I’m surprised at how much a part of me doesn’t want to ever let him go.

On our way home, I asked Avery if he understood everything that had happened.  He said he did.  He understood it all even better than I did.  He said, “Mommy’s going to miss Avery.”

 

Hello, again!

It’s been quite a while, much longer than I originally thought.

I’m rusty!  And out of the habit of writing daily, and also blogging has changed so much in the last many years.  But I’m ready to try.

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”

Spinning

Lately, Bennett has been giving Tom and me little performances in the evening, usually a combination of dancing and karate moves.  He twirls and then chops the air with the heel of his hand, or bends over and kicks his back leg up into a handstand.  By this time, Avery has joined him and they jump and spin all around until they become dizzy and fall down.  I always worry they’ll bump into each other, accidentally konking heads, or that a stray kick will land in someone’s eye. Especially, I worry about Avery. Continue reading “Spinning”