Tuesday, February 21, 2012

A quiet girl

Not long ago, a fellow CdLS parent posted a status update on Facebook about his son's 10th birthday. He mentioned how proud he was of his son and then he wrote something that brought tears to my eyes. He said, "I'd give anything to hear you speak just a single sentence." I get teary-eyed just thinking about it.

Suffice it to say, Joel and I -- and I'm sure most CdLS parents -- can relate. Hope is four and in medical-ese, she is "non-verbal." That means she doesn't speak -- at all. Nada. Nothing. Zilch. She occasionally "vocalizes" -- another medical-ish terms that basically means she makes sounds here and there -- but it isn't often and it can't really be considered babbling or even attempts at language.

The closest I've ever heard Hope to saying a word or even a consonant sound is when she's very upset. She'll say "Ma." You have to listen closely but both Joel and my Mom have also heard her say, "Ma." She may or may not be saying "Ma" in reference to me, but I don't care. I'll take it. I'll take anything that sounds like a word and I'll certainly take "Ma."

Speech delay is very common in CdLS. Most kids don't speak, if at all, until five or six, according to the CdLS Foundation. To be honest, I'm not entirely clear on the physical reasons why CdLS kids don't speak but for Hope, I think low muscle tone may have something to do with. She's considered hypotonic -- meaning she has floppy muscles -- and it makes sense that affects the muscles around her vocal chords, making speech difficult. I think her hearing impairment also is a factor. That's Dr. Mo's take on it.

But just because Hope can't speak doesn't mean we're giving up on communicating with her. We'll do anything to communicate with her.

Earlier this month, Joel and I sat down with Hope's teacher and therapists at school -- PT, OT, speech, vision consultant, and hearing consultant -- and hammered out Hope's IEP (Individual Education Plan) for the new school year. Communication -- in any form -- is our No. 1 goal. Right now, we're working with what's called PECS, Picture Exchange Communication System. Basically, they're pictures with a heavy black outline that kids who can't speak can use to communicate. We have several hung on our refrigerator that Hope can grab and the goal is to get her to give them to us when she wants something.

On occasion, Hope will grab a card when she does, in fact, want a drink. Unfortunately, she also really digs the plastic covers on the PEC pictures so she often grabs them to chew on them. We just got a new set of PEC pictures because our first set was so mangled it looked like it been left on the floor during a Justin Bieber concert. Not pretty.

We've also used devices that have an audio component and a template for PECS pictures to slide into. For example, the last device, called a Go Talk, had 4 pictures in it, all of which had a recorded command such as "I want a drink" or "I want to eat." Occasionally, Hope would use it appropriately. There have even been times where I've seen her grab the "Drink" card from the fridge and go to the Go Talk device and hit the correct button. What a smart girl!

But Hope was very inconsistent with it. Recently, we just had to give the Go Talk back to her school so someone else could use it. We're now trying out a similar device.

Our goal is to eventually get an iPad. Tons of CdLS parents now are using iPads for their kids and I think Hope would love one. Will she use it to communicate? I have no idea, but I think she'll like using it. But before we buy one, Joel and I agree that we need to find some kind of extra duty, super-strength padding to go around it because no one can chuck toys like Hope can. We call her "Shiva, the Destroyer" for a reason.

So that's where things stand with Hope and her communication skills. In the meantime, I'm getting more comfortable telling people that she doesn't talk, or she's "non-verbal," which still sounds so clinical to me. I just had a technician out today to check some of Hope's medical equipment and he was very nice in acknowledging both kids -- I've noticed some people don't acknowledge Hope because she is quiet, which bothers me -- and he said "Hi" to Hope. She looked at him, which for Hope is as close to "Hi" as she gets, but didn't respond. I probably should've told him she doesn't talk, but I didn't. I said nothing. I'm not sure if that's the right response or not.

One last thought on having a child who doesn't talk: Just because Hope doesn't speak doesn't mean she isn't paying attention to what's going on around her or isn't aware of things. She does pay attention and she really does have a lot to say. We just need to figure out the best way to bring it out.


The Gang's Momma! said...

I am here by way of Heidi M. and so thrilled to read of your heart for your family.

This is a great post on the journey of communicating with your daughter. Thanks for sharing what you are learning - I learned something new!

If you are still looking for/thinking about a protective cover for your eventual iPad, you might want to check out this link.... a friend of mine recently reviewed a bunch of iPad2 cases.... Might be helpful to you :)


anita said...

We love how clearly and well you explain things that are fraught with both the clinical and the emotional. Go Mom, go Dad, go, go Hope!

Anonymous said...

Ah, finally! I have been looking for you guys to post for a long time....I miss hearing about the little red headed Darling. Her smile is wonderful but I know you're like to hear some words -- we pray that will happen! In the meantime, love to all of you! Jan

Anonymous said...

Hi Mo, Haven't read your blog for a long time. Not sure if you've gotten the ipad yet. But my sister got one for my nephew and it's been great. He's also non-verbal. And he is also a destroyer. She has a very heavy duty cover on it for the very same reason. :) I'd be curious to know how it works for you. Margarita

Shianna's mum said...

I have a 15 year old girl with Cornelia De Lange, and she still doesn't speak - though she can be vocal if grumpy!

I gave up on all the sign language nonsense, I mean really, how many people understand it anyway?

Shianna now nods yes and shakes her head for no. It's a great leap in communication.

To give you hope, she can now follow simple instructions like "put the doll in the corner", "stand up straight", "do you need to go to the toilet".

I love my little angel with crooked wings. She gives me as much joy as frustration. I'm sure Hope does that for you too.