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An Autism sharing moment

Today, I was asked to participate on a panel at Towson University. The panel was designed to give the students in their autism studies classes a personal look at autism. These folks either already worked in education and were pursing a Masters degree or were training to work in special education.

These folks are the few, the brave, the "heart on the sleeve" teachers that are placing themselves in the valuable position of special education teacher. 

We were there to tell them about the thrills of autism ownership and give them advice on how to help/ connect with their students and their families. 

There were five of us on the panel with children of different ages and experiences. We were handpicked for various reasons and asked to share our stories. The similarities in our stories bind us as a community. 

Here's a few things we all have in common:

* We all noticed something was different, off, atypical of our children at an early age. Trust your gut.
*We all had to pay out of pocket to have our children tested. You can't get a diagnosis without testing. 
* We all had to speed learn about autism and become an expert overnight. 
* When we started out on the Autism path, we all believed and trusted that the schools would do what was best for our children. We learned we were wrong. 
* We learned that schools only do what is absolutely necessary. And even then, sometimes not. 
* We've had to fight for the necessary therapies, supports,  and placements for our children.
* We all feel a level of estrangement, misunderstanding and judgment from friends, colleagues, family, teachers and the population as a whole. 
* We've learned that our IEP chairs are sometimes good and sometimes really, really bad. 
 * We've learned that having an educator who sees and understands your child is worth more than gold. And if they're willing to fight with you for your child, you've hit the lottery. 
* We are always anticipating what could go wrong. And we are always waiting for the call. 
* We're worried now, but worried more about tomorrow and the next day, and the next. 
* We're worried how our children will survive as a part of society. 
* We're afraid our children will be left behind and nobody will notice. 
* We're afraid our children will be bullied.  
* We all carry a sadness that permeates our souls. And some of us feel very alone.
* We all have stories of bad experiences with educators. administration, and other school personnel.
* We are a tough bunch of mothers. 
* We have learned to rise above our predispositions and become the advocate our children need us to be.
*None of us have a solid self-care plan.
*We all look to the future with hope. 

Having one child with autism is hard. Having three, and the twins with IEPs  is a tough job.   I said at the panel, "it's like living with a tornado, a volcano and a hurricane while two crack butterflies are dancing around."

It's a onerous path.  You can't deny it. 
But every day is a choice to look for the good or focus on the bad.
I'll choose butterflies, silver linings and rainbows any day. 

It's all you can hope for. 


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