Happy World Down Syndrome Day!

3-21 is World Down Syndrome Day, because of the significance of the numbers (3 for a trisomy, 21 for the 21st chromosomal pair where the trisomy occurs in T-21, or Down syndrome).  And in honor of my family’s connection to T-21, here’s a list of 21 things we love about Avery:

  1. He’s a snappy dresser.  Especially, he likes bow ties.
  2. His favorite food is shrimp.
  3. He loves to draw.
  4. He loves to play Xbox, particularly football.
  5. He has a guitar and he makes up beautiful songs.
  6. When we sit down to dinner, after the prayer, he gives a little toast in which he says nice things about everyone at the table.  Things like, “You’re a nice guy,” or “You’re a good friend,” or “You’re a good brother.
  7. He always sets the table for dinner.
  8. He like to go camping.
  9. He likes to stay in hotels, particularly ones with room service.
  10. He loves Dr. Pepper.
  11. He’s very deliberate in his actions.
  12. He doesn’t lie.
  13. He notices when people need a hug, or a pat on the back, or encouragement, and he gives it freely.
  14. He likes to have long chats about his future.
  15. He changes what he wants to do in his life often.  He has no problem with change.
  16. He believes everything is possible.
  17. He says “thank you” about a hundred times a day.
  18. He loves animals, especially Sam, our dog.
  19. He has no trouble asking for help.
  20. He has no trouble giving help.
  21. When he laughs, it’s a whole-body laugh, and it’s contagious.

 

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.”

 

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?

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”