I accidentally listened to a promotional on a book the other day...it was: "Far From the Tree" by Andrew Solomon.
And although I was cringing at his voice, and some of the language he was using, I unwillingly found myself agreeing much of what he said...especially with a comment (not word for word): "Most parents have said the same thing in variation: While they would take away their child's disability in a second, to ease the lives of their children with Down Syndrome or Autism or CP, etc, they are thankful for their own perspective change..."
I am planning on listening to (or reading the transcript of, if I luck out!!) the rest of the promotion...and looking for the book to see if I agree with anything else, because I am intrigued with the premise...
But it's true. I am thankful for my own perspective change. I appreciate the little things so much more! But I know that Down Syndrome is hard on Elise. I know that it will only get worse. I know that it will prevent her from having freedom, from having opportunities, from relationships...I hurt knowing that.
Elise went down to the hospital for her usual annual doctors' appointments, Cardiology, Endocrinology, and Oncology (the results of all that is another story)...and we added a Communication Technology intake...to see if she was a good candidate for a speech device.
I've said before, that Elise is really beginning to feel the effects of not being able to talk/communicate to others clearly. We are seeing more frustration, anger, and depression. She cries when people don't understand, she pitches fits when people don't understand enough to do what she is talking about...
Well, she is a prime candidate...and so now we move to the trial stage...because, although we could start the order process now, whatever device we choose will be ours, with no change, for five years...so we want to make sure that the device is a good fit.
And how does this intake tie into the first bit?
Because Elise was sick yesterday. Or this whole week really. She has been "off" and complaining of head and stomach aches...and emotionally unstable. We are struggling to understand what is going on. Is she unhappy at school? Is she sick? The final straw was yesterday when she refused to eat. If you know our battles, not eating has NEVER figured into that. I even tried to make her Ramen and Pizza. And she passed. SO NOT good.
I wish she could talk. It was such an incredible high point last year when she could finally tell us what hurt, when she was sick. I always felt like a crazy woman when I took her to the doctor because she was rubbing her head in the carpet. The pediatric nurses don't really view that as a viable reason to see someone as a sick visit...but it usually was indicative of an ear-infection. Sore feet? Strep throat. Not even making this up.
I am looking forward to the device aiding her explanations and stories. Because there are a lot of them locked up behind her lack of speech. She is 2-4 years older in receptive language than expressive. That's a big dadgum gap.
Will this help her in emotional expression? I hope so. But I don't really know. Does she understand her own emotional state? I am not confident she does. That causes the biggest problem in her speech gap. I know it will come, but it's like a 2 year old who is overtired and reacts by running in circles and weeping...and they don't even realize they are tired. That's where we are, really...
We are emotionally overtired...all of us....
I can't wait for the device support. Even if it sounds like a Mr Spell
And she doesn't turn out to be Stephen Hawking
If we could get some more explanations, just a little bit more, then we can talk. If we could even get 3 more words in a sentence...do you know how much more of the universe that would open to us??
It almost blows my mind. It is like Stephen Hawking's perspective on the universe compared to Mr Spell.