Tuesday, June 3, 2014

Transition

We had our transition evaluation with the school system today. Kit's occupational therapy right now is provided through Early Intervention. But the school system takes over when she turns three. So they must evaluate her to know what needs to be in place by then. Today was cognitive and speech evaluations.

"She shows no educational signs of autism".  Despite her not speaking, just using signs, until well into the evaluation. She scored so high on the intellectual tests that they believe she is probably gifted. One test they just had to stop because she never hit the six wrong answer ceiling. The material she ended on was well beyond kindergarten level. 

All of that makes me happy. Sort of. It  should make me happy.

Except it also means that she is not going to qualify for any assistance, which I already knew.

Intellect is her specialty. But she still can't make it through the day without major sensory adjustments, huge amounts of planning and redirection, and work work work. She can't answer basic questions like 'how are you?' that are based on identifying feelings or other abstract concepts. She can point out picture emotions and label them, but she cannot connect them as reactions to actions, especially not to her own actions.  

But according to them...She makes eye contact. She points. She can have back and forth interaction. She is not intellectually delayed, therefore no signs of autism.

But what they just don't understand is the amount of work and practice I have done with her over the last two plus years to help her communicate and be comfortable in her own skin, and less anxious. That without teaching her sign language, and sensory integration therapy through her OT, we would have completely lost her so deep into the void I have no idea where she would be right now.

We found her keys very early and were able to use them to build bridges and make huge progress in a shorter time than many others, but that doesn't mean she doesn't have daily struggles still.

It doesn't seem to matter that she lost all speech and was nonverbal for nine months. That because she can speak now, autism must not have been the culprit. Which makes no sense to me since the goal of most autism therapies is to get the child to the point where they have "few to no remarkable differences from peers" and that they become able to interact with little "interference". The goal is to be able to mainstream, and help these kids participate in life with less disruption.

If a child meets some or many of those goals, that doesn't mean their autism is gone, or never existed the first place. It means the therapy is working. The hard work and perseverance and coping skills are seeing the hoped for results.

Her intelligence is not a sign that she doesn't have autism, it is a key to helping her manage and cope with it. To be able to work with it instead of against it. Her eye contact, and back and forth conversation is proof that all of her tools are helping. That her brain is finally feeling organized. It's a sign that all the work we have put in has helped her before she sank into the void where so many on the spectrum end up.

Just makes me cry. It feels like we will always be troubleshooting alone. It brings me to tears every time to know that if I hadn't worked with her past my breaking point, that she would be manifesting all of the 'delays' that they look for, but she would also be miserable as would our whole family, but none of the "professionals" seem to ever really get that. Or how much work most days still are with her. How delicately balanced everything is with her.

That when I burnt out and stopped working with her daily, (just did basic life care like feeding, diapers, bathing, but no OT, no sensory diet) she regressed again. Her speech dramatically reduced, her reptative behaviors substantially increased, as did her anxiety.

We still have the offical Autism evaluation to go through. I'm not expecting her to meet that critiria either since it is very different than a medical diagnosis. I still can't understand why they are not the same critiria.

I wish there were more professionals out there who could see the scope beyond delays. That that is just one small, though for many kids, critical,  part of a much bigger picture. But it's too hard to test for the bigger picture. 

Our Occupational Therapy ends the day she turns three. And as far as I understand,  the school system offers no suitable alternative even if she qualifies for sevices. We will likey be back to all on our own. She's improved phenomenally over the last nine months,  a whole different kid. Hope we can keep helping her stay as steady as possible after OT ends.

How different it would be if those who do evaluations were required to come spend two solid weeks in our home, day and night. To see what we see, and what we do, and how she can go from having a great day to awful in just seconds. To glimps the subtleties and nuances that add up to big impacts.

***

They asked me today, when she grew up what I wanted her to be.

I thought it an odd question. Who am I to say what she should be? What I want her to be is of little value, it's she who has to choose to be anything.

What do I want her to be when she grows up?

Happy.

I want her to find her passion and pursue it.

And that's exactly what I told them.

And that's exactly what makes every ounce of effort we expend worth it.

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