Skip to main content

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. 


Popular posts from this blog

Diary of a music mom

Since fifth grade, both #1 and #2 have been playing instruments; #1, the saxophone and #2, the trombone. #1, Autism classic, plays the very same saxophone that I started on in fifth grade. I  teach him daily and we go once a week to our new sax teacher and they work on jazz. #2, the aspy is a lot more autonomous and he doesn't require my attention when he practices and gets by with his weekly skype lessons from grandpa and his private teacher.

Every year, our school district hosts a solo and ensemble festival. The kids have roughly eight weeks to choose a listed piece and then perform it with an accompaniment. Every year, I make the boys participate even though it means I need to spend more time with #1 to make sure he doesn't sound like a moose in the wild and more like a saxophone player.

It always turns out like this:
I choose the new piece and we trudge through it slowly and painfully.
I second guess my choice because I think it's too much, too hard, too intricate for …

My Heart Will Go On

At the end of the school year, the teachers usually host an event to give thanks to the many parents who helped out during the school year. When I went to #1's school, they had an elaborate spread and the highlight was when the sign language club performed a few songs.  #2 & #3's school, had their volunteer appreciation breakfast last week, and I was happy that I was able to bring the twins with me.

Everything was great. There was food, coffee, juice and some awesome moms. But, then the music teacher brought in the fourth grade class and they were all holding their recorders. Great. One kid practicing the recorder at home is painful enough.  Forty kids playing recorder in a quasi-controlled group is just one way the music teacher can express her feelings about not getting any holiday presents or special accolades during teacher appreciation week. F-U people, I teach your talentless kids and it is a thankless and painful job.  I'm going to let you know how much I apprec…

World Autism Awareness Month: A Time To Focus On Our Similarities.

Tomorrow, April 2, is World Autism Awareness day. I thought about all the things I could say about awareness and then I realized that the people who read this blog know all this stuff. With the latest release from the CDC about the number of children diagnosed with Autism now at 1:68, there will be a day that everyone will know or be related to someone with Autism. And unfortunately,  It is only when something affects everyone is when things will change.

I decided to re-share excerpts from my post: We're More alike than you think. The post was inspired by Willman Stillman and my self-observations. Everyday I look at my children and realize I have more Autistic qualities that I realized. I have also realized that it not necessarily a bad thing. Maybe melting and throwing myself on the ground if I can't find my keys may be over-doing it a bit, but many things are really a core part of me; like my ability to memorize information. It comes in handy on Black Friday for sure.