Friday, April 18, 2014

"I feel tired"

The title of this post is in quotations because it is a quote from Lucy...her first grammatically correct complete sentence! And this she said with her book, not her Tobii! I am so incredibly proud of her I couldn't shut up about it all night! The day has barely begun and I feel like I still have a lot to say about it! Learning to speak for a typical child is a natural process. Our brains naturally allow words to be formed and to come out of our mouths. Because that is so relatively simple for most, then it is just a matter of learning the order that words should be put in and this comes from listening to others and imitating. Now of course I'm not a speech therapist and I'm sure there could be a much more accurate description of that process, but my point is, while most humans learn to speak with little trouble and just slide through this natural process, it is just so much more complicated for a child who is nonverbal.

First, Lu has had to learn to control her head enough to indicate yes and no with it, and she does. Then she has had to learn how the PODD system works, and she did. I'm sure she doesn't know what every single symbol is in the book, but she seems adept at making a decent guess when she doesn't know. And then we introduced the Tobii with a slightly different version of the PODD, and she rocks at that too! It is hard, and complicated, and different, and involved, but she is learning language just like every other kid her age! She could've just said "tired" and I would've known what she was saying, and she knows that, but instead she chose to say a complete sentence...while being tired!  Here is the page she used for her first sentence:

I don't know that I have ever explained much about how she uses this without being able to point to her choices, but I will try a quick and simple explanation:
First I say, "Is it in this column?" And then she indicates yes or no with her head ( she nods down toward her chest for yes and off to the right for no). If she says yes then I go down the column and for each individual symbol I say, "Is it this one?" and she again indicates yes or no. If she says yes then I ask if it was an "oops" in case she made a mistake, and then we just continue on like that throughout the book until her message is complete and she says, "That's all I have to say about that."  It's not simple, or especially quick, but it is effective and we love it. 

I want to share some of the other things Lu has said in the past few weeks:

With the PODD on her Tobii:

"I have a question, tell me yes or no, Lucy, go, appointment, doctor, better?"

"I want, rest."

She wouldn't take a bite of strawberry with dip one day and so I ate it, and then she said, "That's mine, excuse me!"

Lucy had some granulation tissue under her feeding tube that was bleeding, and I was talking to myself about it as I cleaned it one morning and later she said, "bleeding, stomach, appointment, doctor, appointment" I assured her it would be okay and we didn't need an appointment and then the next day there was no more bleeding and I made sure she knew that and then she didn't seem worried about it anymore. 

"I don't like this, think, yucky"

We were at a loud and big family dinner and she said, "hate, chat" and Chad took her in the room for some quite and then she was okay!

"I have a question, why, appointment?" This was before her dentist appointment one morning.

"I want, cuddle, rest."

She was in her stander and we were working on her birthday invitations and she said, "You, I don't want to do it, mean, tired, sick, toe" 

We were doing an egg hunt at the library on Wednesday and she said, "I think it's, bad" and I asked if she wanted to find more eggs and she said no!

With her book:

"Excuse me, I think it's, sad, favorite"

"Hurry up, please"

"Hurry up, feed, pet" she wanted to help feed her fish.

Mom came in with a new perm one day and Lucy couldn't take her eyes off of it and mom asked several times if she thought it was silly. Then Lucy said she wanted to use her book, and she said, "I think it's, not, silly."

"It's, cloudy, I understand, can I play, I'm sorry, what's happening" then she switched to her Tobii and finished with, "you, teacher, Lucy"

So, on top of everything that Rett Syndrome piles on Lucy, all she has to deal with, she still is learning to make herself heard. I'm going to include a picture from last weekend, because really what's a blog post without a picture of Lu, but I wanted to also share a challenge she has been dealing with an extra amount this week. As I have said before, she takes Lexapro to help with her mood because Rett Syndrome creates a chemical imbalance that causes the girls to cry, have anxiety, and sometimes just be very irritable. Her medicine works well, but this week she has been crying a lot and it started on Sunday as we drove to Black Moshannon for a little walk on the one handicap accessible trail they have. We don't know what upset her, if it was the sun flashing through the tree branches or just some anxiety about going somewhere new, but she cried and cried. We eventually got her calmed down and she had a great time, but that is just another example of how Rett Syndrome impedes her life. We just wanted her to have a nice time in the fresh air. So again, in spite of a Rett Syndrome, and all that it does to her, Lu perseveres. Even though I just wrote way too many words, I still don't think I have found the words to express how amazing she is!

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