28 March 2011

Speech stuff

Next week I'm taking Camden to COMO for a dr's appointment with a developmental pediatrician, where he'll be screened by a number of therapists/specialists (speech, occupational, physical, and so on). He's been diagnosed with apraxia, which is a neurological expressive speech disorder. With this appointment, I was really hoping to get him tested for food intolerances/sensitivities so we could determine whether or not a change of diet could be useful. Unfortunately, when I called today to see if I could set that up, they said that they would have to refer us to an allergist. Which is just as well, since I wouldn't be able to try a GF/CF diet until May, when I'm out of school and have time to prepare all his meals (including those he eats at school, since his school meals are almost entirely based off of grains and dairy). Anyway, despite the fact that they won't be able to test him for that, I will hopefully be getting more strategies and ideas to work with/pass along to his speech therapists here in KV.

I didn't know that living with his apraxia would be such hard work. I didn't realise that it would involve a lot of translation (I feel bad leaving him with people who don't know him, because he's just so hard to understand, and he gets frustrated and the person he's with gets frustrated). I didn't think he would have to fight so hard to make a sound that is easy for most people (thinking /k/ and /g/ here). I didn't think that I would be driven to tears multiple times a week, simply because I can't understand something that he's wanting to tell me. I didn't know that I would want to punch people (okay, certain person--unnamed) for telling me that he's not doing it because he's lazy (the apraxia dx was a huge in your face). I didn't realise how frustrating it would be to have to drill the same idea over and over and over every day, several times a day.

Of course, I also didn't know how my heart would soar with happiness and pride when he automatically uses the right word (saying I want instead of me want for example) or puts the right sounds together for the word that he wants. Or when his speech therapists tell me that he's their favourite patient. I didn't know that he would work so hard to be understood, by repeating what he says, trying to enunciate, saying it a different way, gesturing, etc.

We are far from the end of our journey with apraxia, but every day Camden makes improvement. He says I with increasing frequency, though not nearly as often as we would like. A year ago, he couldn't tell a story. He can now tell a short story about his day. A year ago, he used 1, 2 and 3 word sentences almost exclusively. Now his sentences can reach up to 6 or 7 or 8 words long, though he still uses a lot of shorter sentences. He does a lot more creative and imagination play now than he used to (though that might just be part of growing up/normal development?).

He makes my heart sing every day that I know him, and every day that I know him I love him more.

A story (not mine, obviously):


I am often asked to describe the experience of raising a child with a disability
- to try to help people who have not shared that unique experience to understand
it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip -
to Italy. You buy a bunch of guide books and make your wonderful plans. The
Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some
handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags
and off you go. Several hours later, the plane lands. The stewardess comes in
and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm
supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and
there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting,
filthy place, full of pestilence, famine and disease. It's just a different

So you must go out and buy new guide books. And you must learn a whole new
language. And you will meet a whole new group of people you would never have

It's just a different place. It's slower-paced than Italy, less flashy than
Italy. But after you've been there for a while and you catch your breath, you
look around.... and you begin to notice that Holland has windmills....and
Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all
bragging about what a wonderful time they had there. And for the rest of your
life, you will say "Yes, that's where I was supposed to go. That's what I had

And the pain of that will never, ever, ever, ever go away... because the loss of
that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy,
you may never be free to enjoy the very special, the very lovely things ...
about Holland.

Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved

1 comment:

  1. I think I've mentioned this before, but I think Camden is very fortunate to have you as his mom. Would also add that you are very fortunate to have such a specail son. These challenges will help him to be a better person. X.


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