Monday, February 23, 2009

It's Signing Time!

So, I took Harlie to the doctor today. She has another ear infection - and this is WITH her tube! Ugh! He said he was more worried about her left lung than her ear. So, he's treating her ear infection with some antibiotics to try and stop her from getting worse - on both fronts.

She has her pre-op heart catheterization on March 10th and she must be "healthy" or they can't do it - which would push everything back. And we don't want that. So hopefully the meds will help her get better soon. When she's this junky we really can't get anywhere with her feeding or speech therapies. Her secretions are way too much for her to handle. We are going through bibs like crazy. Within minutes they are soaked. (Donna - I KNOW you know what I'm talking about!!!). Yes, it's disgusting, but we're pretty used to gross stuff around here.

After I got back from taking her to the doctor I ran to the gym, got 4.5 miles in and then came back home and rushed out for her first speech therapy appointment with our new therapist, Michelle. Harlie was definitely NOT excited about it. It is definitely very different to have to go to the clinics vs. them coming to our house. It takes a few minutes for her to get comfortable enough to get something accomplished. Whereas when they came here, they could just get down to business.

Anyway, after being there a few minutes, Harlie signed "home" and "hat" and grabbed her coat to leave. I love that she can "tell" me what she wants! While I knew we wouldn't get much therapy done with her being sick, I also knew that Michelle and I would have to do a lot of talking to bring her up to speed on Harlie and where we are and where we want to go. She asked me what Harlie knew, what our routine is like and what is on the horizon for her, medically speaking. We talked about communication and what I like/don't like about some communication methods.

Michelle was a sign language instructor, so she likes sign language and is very fluent signing while speaking. I find it amazing, really. So far, I have enjoyed signing with Harlie very much. And, while it certainly has a major negative (not everyone knows sign) it provides the "easiest" form of communication for my family (I believe) so far. So, we have decided for now that signing will be our main form of communication. And when right, we'll start to look at some communication devices (computers) for the future.

Please keep in mind that for the past 6 months, we believed that Harlie would be decanned this spring or summer and verbal communication would be right around the corner. Ha! While that was naive, and probably pretty stupid on our part, it is what we desperately wanted. So, now that we know her next jaw reconstruction will be in September, it will be spring or summer 2010 before that will be a possibility again. So, we have to look a little more long-term and right now, signing is the best means of communication for her and our family.

This means that we have to learn to sign while we are speaking all the time so she can see us using it and so she can better learn - not only signs - but language development. This is called "modeling". And this is also very important because as she gets older, her frustrations will grow if she can't communicate her needs/wants to us, causing unwanted behavior issues.

While Harlie wanted to leave to go home (which she clearly communicated) as soon as she saw Michelle signing to her, she perked up. She watches the signs and immediately tries to do them herself. She knows what signing is and what she gets out of it. It makes me VERY happy to see her communicating and it is so exciting to think of all she will be able to say!! Michelle showed me some tips on how to teach her to string the signs together (important for language development) and by the end of the appointment she signed "I want to go home" vs. "home" and "hat". Crazy, isn't it?!?! And while it might not seem important for her to sign sentences since I clearly understood her when she signed just two words, it makes a huge difference when she can verbalize. Which, we will still continue to work on. Ideally, she will learn to verbalize and sign at the same time, just like us, until signing isn't necessary anymore (down the road a bit, of course).

So, what does this mean to those that see Harlie on a regular basis? Yep, I'm going to ask you to please learn some sign so not only you can communicate with her - but so she can communicate with you. It's a toddler vocabulary, so it's really not difficult. In fact, it is quite fun - especially when you can understand her. So, to all my family and friends, let's talk about this more in person. You won't find a more appreciative person around - I promise! I'm talking about me, of course!



Donna said...

First - I do feel your pain on the bibs...let me know when you're ready to try some of our bandanna's - they're a little more absorbant than the bibs! Second, I'm DYING to take a sign language class and Alex's teacher gave me some great resources - so let me know if you're going to go somewhere to learn and I am IN!!! Plus, I'd love to have my own little conversations with Harlie! :)

Beth said...

YEAH!!! It sounds like Michelle is an AWESOME fit for Harlie! I knew you guys would be in good hands. I miss Harlie terribly =( But it is a big relief knowing that she's going to get excellent care with her new therapists. Give lots of hugs and kisses to Harlie from me!

Sandy said...

I think us learning sign is a wonderful idea. Do you think Michelle would give us a "sign clinic" (we could make it worth her while)? I know Rick and the kids would LOVE to be able to communicate with Harlie. Let me know how I could help putting a "clinic" together.

Susan said...

That's great Christy. Ainsley doesn't have the motor skills to sign so her language development is pretty much on hold until she can get the trach out. Best of luck with the sign language. It sounds like you have a great plan and a quick learner so I suspect things will go well for Harlie.