Who said Tuesday’s were boring?
Never moi for sure and for certain.
Miss Sassy Pants (i.e., the sweet and ever endearing Miss Courtney) had a BIG appointment at Georgetown this morning. We were meeting with the Speech and Technology Team as well as the rep from Tobii. They gathered to see if Miss Courtney was a candidate for an augmentative communication device.
We have tried in the past to see if Court would use a switch or a communication board to be more present and in control of the world around her. We hoped she would be able to tell what she wanted to eat. Where she wanted to go. Call us by name. Unfortunately this was not something she has ever been able to do.
With the med change back in February, Courtney has made some pretty significant strides in development and is much more aware of her environment. The therapy team thought that now would be a good time to try and see if she would use a device.
Oh, what an interesting experience that was–watching my daughter “tell” the therapy team that in no uncertain terms she was NOT interested in their new fangled contraptions.
Not interested AT ALL I say. Just look at this face…
For a kid who has never spoken a word, I think she gets her point across just fine, don’t you think?
Now you might think that I am disappointed that she was uncooperative and downright mad most of the time. I will admit it was a pretty impressive display of attitude. The therapists sang and encouraged her. They rubbed her hands and tried every trick in their quite extensive handbook to get Miss Courtney interested in using the device. After she tried to kick her speech therapist, she proceeded to throw the big red switch off her tray. Then as they were working with her to punch the screen or use her eyes to make a choice, she used her eyes alright. She rolled them constantly and kept sighing. She would not do anything the team asked her to do.
Amazed at the strength of will my Courtney displayed? Absolutely.
Once again, my girl did things her way. On Sunday, she will celebrate her 21st birthday. I know, I can’t believe it either. For twenty one years she has communicated using her voice, her feet, and her facial expressions. We have understood her 99% of the time. The only thing I wish I could hear is “Mama” and “This is where it hurts”. Other than that I am all good. My girl is my girl and she will do things on her terms alone.
I learned long ago that I am not driving this bus, and even when I thought I was, I really wasn’t. God just let me think that I was. I have had to rely on my mother’s instinct and trust in God’s guidance for every last decision made regarding my Courtney. That includes this morning.
I was nervous this morning. I really wasn’t sure what Courtney would do. I had a small ray of hope alive in my heart thinking that she would be able to use the device. She is so much stronger now than she was a year ago, anything was possible. What mother doesn’t want their child to be able to communicate her needs using actual words?
Along with that ray of hope, there was the little circle of protection, the wall that surrounds my mother’s heart to protect me against the ever present onslaught of sadness, depression and the deep desire at times to just throw the towel in and give up. To stop therapy and testing, and just sit at home with my daughter until she dies.
That is no way to live and I make an active choice every single day to not give in to those feelings. It doesn’t always work as the reality of my life and what my Courtney has to deal with seeps in from time to time, but for the most part, we soldier on here in Lenaburgland. It’s how we are hard wired.
This morning presented a Mama challenge I have not had in awhile. I needed to be supportive of Courtney, cautiously optimistic of the outcome and prepared for the whole thing to be a disaster. I had such a sense of peace as the appointment went on. Even though in the end she does not qualify to use the device, today was far from a disaster.
My Sassy Pants of a daughter using her hands, feet and persistent humming, made it known to me and the team that she will be just fine without an augmentative communication device. I gotta tell you, she made me a believer.
AT the end of the appointment when I took off her tray, told her we were done with the testing and that we would go get a snack and see Grandma Green, she crossed her leg and started laughing.
Oh yeah…Miss Sassy Pants gets her way one more time…as usual.
We don’t need no stinkin’ communication device…she has what God gave her and that’s all she needs.
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