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February 26, 2013

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It is human nature to adore your children.  To think that they are special and different and unique and smart and talented and wonderful.  I remember watching Rett quote movie lines and sing portions of movies, looking over to see if I was watching him and thinking we had an actor on our hands.  And seeing Evie build amazing train track configurations and thinking, there is an engineer in the making.   It is human.  It is normal.  It is wonderful.  Wonderful to think that you were entrusted to raise just magnificent little creatures.

But I was asked to walk a different path.  The path where if your children are too smart or too skilled, they can’t get help.  Where my 20 month old could identify all her letter and letter sounds but had to be taught to say yes.  And my 4 year old knows all the on level educational stuff but can’t understand the word ‘beside’.   These are called splintered skills where there are big gaps of knowledge randomly in their skill sets.  Where in some areas they are ahead, and some areas they are behind.  And because they need so much help in the areas that are behind, I am called to rejoice in the tests that score them badly because FINALLY, finally we might can get help.

I received Rett and Evie’s evals back from the doctor I took them to.  This doctor is primarily for Katie Beckett Deeming Waiver.  They give you every test that the deeming waiver will accept and then they just use the data from the ones where the numbers are right and they qualify.  And so I rejoiced in the low scores.  Where it said my daughter was ‘very low’ and my son was scoring in the 3 month age range.  And yet… it still hurts.   But I was asked to score them on a bad day, at their lowest.

My inner voice was comforting, comforting, comforting.  Talking me down off the ledge.  Where I hate this part of my life. Where I am called to swim up river, against human nature.  To be happy when your children score low enough is sick.  Its evil.  To be in that position, I would not wish it on my worst enemy.  Because isn’t life hard enough?  Isn’t what we were called to do hard enough?

And then Tom brought up something else that the eval had on it.  That I hadn’t even noticed. I was so happy that I hadn’t wasted the money and that our scores were low enough that I just skimmed the rest of the eval. And there, hidden in the last paragraph where it said that Rett, that my first born son, the child that made me a mom had mild mental retardation.   And my inner voice didn’t work anymore.   And even though I know exactly why that was written on that paper.  Because my boy who knows all his ABCs and numbers and all different types of animals and instruments doesn’t know the word BESIDE.  I have to admit that I’m not doing very well right now.  And if it were possible for me to curl up in a ball and sleep for the next few  years and let someone else carry this on their shoulders, I would.  But I can’t.

So even though I woke up about 10 times last night worrying over the stupid sentence on a piece of paper from someone that spent 20 minutes with my kid, I got up today and went through the motions.  But I know its not enough.  I have to dive into a PILE of paperwork to get our Katie Beckett Deeming Waiver stuff done.  At least 6 hours worth of work.  Because that’s the entire point of all of this.  And right now its difficult to just get out of bed.

 

Oh, what I would do to have the kind of faith it takes

To climb out of this boat I’m in onto the crashing waves

To step out of my comfort zone into the realm of the unknown

Where Jesus is and He’s holding out His hand
But the waves are calling out my name and they laugh at me

Reminding me of all the times I’ve tried before and failed

The waves they keep on telling me time and time again

“Boy, you’ll never win, you’ll never win, you’ll never win”

But the Voice of Truth tells me a different story
The Voice of Truth says, “Do not be afraid!”
And the Voice of Truth says, “This is for My glory”
Out of all the voices calling out to me
I will choose to listen and believe
The Voice of Truth

 

I stand firm in the belief that we will get this help for our children.  That this is the reason for the move and the reason for the people that I befriended that led me along this path.  That in a few months, I will be posting about our acceptance letter. And Rett and Evie will get twice a week speech, once a week OT and PT (for the first time ever) completely covered.  That the ABA law that is up for vote will be passed and Rett can continue to receive ABA.  Its a mountain.  But a mountain can be moved.

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2 Comments leave one →
  1. Cecilee Hayes permalink
    February 27, 2013 1:59 am

    Somehow I knew you were writing your blog. Somehow I knew your heart was hurting. And when you were awake 10 times were you not thinking of ways you could teach Rett the concept “beside”? You will always be looking for the solutions. It’s who you are. If anyone can move the mountain it will be you. Your bravery astounds me.

  2. February 27, 2013 8:10 pm

    You know I am new to this “world”, and I don’t know much about the evaluations yet, or why they would write that in the report. However, I do know this much: Rett is an incredible kid, and I would love for my son to take after him. He has come so far with all of the support you have given, and the sky is the limit for him. I believe in my heart that there are great things in store for him, for all of your kids.

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