Sunday, September 11, 2016

i hate post-it notes.

The night before we took Maddy for her initial visit with Dr. MAL, I wrote down every one of her very obvious autism symptoms on a pink post-it note.

Like a cruel to do list.

I don't know if I chose that small piece of paper to try to minimalize the very large amount of symptoms she was showing. As if I wrote it on a smaller piece of paper that the symptoms would also minimize and eventually shrink away. Disappear in some land fill. Forgotten. Like they didn't matter.

But they did matter.

And they didn't disappear that way.

I remember pulling out that dumb pink post it note with trembling hands as I tried to hide what I already knew. My baby had Autism Spectrum Disorder. She was 1 in 64. To me she was 1 in an infinity.

Last week Maddy went to see Dr. B, her eye doctor, to see if she was ready to start vision therapy. It was clear last year that she was suffering with a delay in reading and had some visual tracking issues but everyone wanted to wait until she was just a bit older to make sure she was mature enough for vision therapy.

I walked into that meeting fully expecting to be leaving with an arm full of hand outs of tracking exercises and letter reversal games. I was not expecting to leave with a yellow post-it note with three names of a diagnosis she had just been assessed with. A post-it note that I had asked him to give me with the name of the diagnosis so I could start to process something that I had never heard of before. A post-it because I didn't want to wait for the official letter.

A stupid ugly yellow post-it note with the words "dyseidesia" written on it.

Maddy has been diagnosed with Orthographic or "surface" dyslexia. It means that, in Maddy's case, her brain has no capacity for sight words. That she can't look at a word and just know what it is. She CAN phonetically sound out words up to her grade level but if you asked her to read a sight word, she will be completely lost.

Take the word: EYE

You cannot phonetically sound out the word eye. It's just eye. Or the word "Said" - that is just said. not "s - ay-d"

There is no vision therapy for this.

As Dr. B explained to Maddy..."it's like being color blind. You can't make someone see a color and it's not your fault that you can't do it. It's something miswired in your brain. And that is how it is."

Now....hang on...I KNOW there are plenty of people out there that are dyslexic and they are highly successful people. I KNOW there are things that I can do to help her maneuver through this.

I know.

But hang with me for a minute....this girl has been dealing with Autism Spectrum Disorder since the age of 2, was diagnosed with Sensory Processing Sensitivity last year....and now Dyslexia.

It is a devastating blow.

Like 2 steps forward and 1 back at every corner.

She's a fighter. But even fighters get tired. Even fighters need a time out. A rest. A moment to catch their breath. To sit in the corner and gather their thoughts and their courage.

Another tidal wave brought us off the shore and we need to find another life preserver. New considerations. New curriculum. New visual input.

She said to me, "I am so mad at my brain. I'm so mad at my brain. Like so mad."

I said, "I know, baby. But we can do this. We'll get this. We will rock this and you WILL read."

Standing strong on a mountain  of uncertainty. That's where I have to be for her. There is so much in her life that keeps slipping out from under her. I cannot be one of them. I must be the constant. Despite my own doubt in myself, I am thankful for a loving Heavenly Father who knew this was coming and was not surprised. I have to find peace in Him, in His goodness. In His knowledge of how Maddy's life will proceed.

Battling autism, sensory processing, and now dyslexia as well as my cancer. Yep. But God IS good and we will march on. Forward. Ready for all the bullets of doubt, confusion, and insecurity.

Lord, be with us.

2 comments:

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  2. Hi Katt,
    Thanks for sharing. I will be praying, and if in my studies and dealing with the specialists that I work with, I find things that may help, I will pass them on to you. God strengthen you. Lisa

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