I feel like such a broken record. I feel so broken. How can I feel whole when a child of mine is suffering? I feel like I can't do it all. Be there for everyone. Be enough for everyone. Do enough for everyone. Autism can be all-consuming. I can feel it eating away at Vicki, at me, at Joey and Ally, at my husband. And I just want it to stop. Time-out. Please.
The way Vicki hugged me tonight. So tight. Like she didn't want to let go. Like she needed me. Like she was afraid. One of the girls that works with Vicki and has seen the changes in her over the past few weeks... she texted me tonight after she saw Vicki embrace me and hold her hand and she said it best, 'I can just feel her fear and confusion'. And it is terrifying to me. And I just want to crawl inside Vicki's brain, find the circuits that are not connected or are misfiring and fix them. If it's broken, then you fix it. That's just what you do. Of course I would love for there to be a cure for autism in mine and Vicki's lifetime. I am not saying that Vicki is broken because of autism. Not at all. But I am saying that Vicki is not Vicki right now. And that's what I want back. I want to help her find herself again and help her through all of her fear and changes that are occurring. I know I am putting way too much stock into her neurology appointment tomorrow. But, I need to believe something can be found to help this sweet child of mine. And when I look into Vicki's eyes, I can see that she wants it too. I can't describe it any other way.
And quite honestly, I've been talking about it all and thinking about it all so much today. Coming up with lists of things that I want to tell the doctor, in case something I say means something. Talking Vicki through hours of tasks that she could do independently just a few weeks. I don't think I have anything more to say tonight that can make any sense. So I am going to do 2 things to finish this post out tonight. Give you a little glimpse at a little section of my 'list' for the doctor and let some songs lyrics say what I want to say tonight....
Vicki’s Behavioral Changes since the beginning of April 2012:
Behavioral? Developmental? Hormonal? Neurological?
Echolalia
o Significant increase
o Before: she would echo back directly after you spoke to her what you said to her, whole phrases, made sense.
o Now: she echoes things at odd times, other people’s conversations not directed at her, picking out words, yelling them, the vocal intensity … sometimes what she yells is difficult to understand completely.
Gait
o Slow, choppy, two steps forward one step back, foot stutter, hesitation, needs encouragement
o Takes a few steps, stands and backs up into you, needs sensory physical reinforcement to keep going
Recall
o Words and pictures she normally recalls quickly she is struggling to remember
Word production
o Sometimes a word is very garbled with multiple fragments that don’t make sense
o Forgetting labels of common objects
o Slower… drawing syllables out, ‘I wannnnntttt ittttt… yeahhhhhh…. .yeahhhh..’
Confusion
o Looks confused, like her brain is working but language is not
o Can’t make connections, is lost in herself*
o Has a different look on her face like she is confused and doesn’t understand why she can’t verbalize
Yellingo Increased significantly over past couple months, lots of “YAAAAAA”
o Almost seems uncontrollable, reflexive
o Odd utterances
Crying
o Bizarre times, no apparent reason, real tears
o Sounds more like a baby
Level of Prompting
o Needs almost constant prompting for every little tasko Like she is frozen until you give her the prompt
*Mouthing objects a LOT, tried to shove things down throat (lollipop stick, laminated paper)
*Odd spatial awareness, grasping for things that aren’t there
*VERY unpredictable, not able to anticipate the changes in her behavior, they escalate and de-escalate very quicklyàwhat we used to be able to anticipate being a problem isn’t and random things become issues
*Some things seem very infantile-wanting to be picked up, crying like a baby, talking like a baby
*Odd spatial awareness, grasping for things that aren’t there
*VERY unpredictable, not able to anticipate the changes in her behavior, they escalate and de-escalate very quicklyàwhat we used to be able to anticipate being a problem isn’t and random things become issues
*Some things seem very infantile-wanting to be picked up, crying like a baby, talking like a baby
Words to describe: bizarre, erratic, uncontrollable, unpredictable-Not Vicki. Intense, lost, different, lacking something and she knows it, disconnect.
You get the picture. Right? I'm sorry tonight's post seems so... blah. But I feel blah. Oh, and speaking of feeling blah, Vicki got her period today. She's still not on a very accurate schedule. Luckily though, and you need phrases like that... Luckily... she seemed pretty good with it today, all things considered. :)
Anyway. I said I was going to leave you with some words from songs that are touching me right now. Here they are. Starting off with a little bit of Guns N'Roses...
She's got eyes of the bluest skies
As if they thought of rain
I hate to look into those eyes
And see an ounce of pain
Oh, oh, oh, oh
Sweet child o' mine
Oh,
Sweet love of mine
Where do we go?
Where do we go now?
Where do we go?
Oh, oh
Where do we go?
Oh,
Where do we go now?
Moving into a little bit of Green Day....As if they thought of rain
I hate to look into those eyes
And see an ounce of pain
Oh, oh, oh, oh
Sweet child o' mine
Oh,
Sweet love of mine
Where do we go?
Where do we go now?
Where do we go?
Oh, oh
Where do we go?
Oh,
Where do we go now?
I walk a lonely road
The only one that I have ever known
Don't know where it goes
I walk alone
I walk alone
I walk alone
I walk alone
I walk alone
And now for a little bit of hope for tomorrow, a new day....
Morning has broken, like the first morning.
Blackbirds have spoken, like the first day.
Praise for the singing, Praise for the morning,
Praise for them springing, Fresh from the Word.
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