Friday, March 13, 2015

From Awareness to Acceptance to Belonging

In just a few weeks, it will be April.

April has been declared as National Autism Awareness Month.  The United States recognizes April as as special opportunity to educate the public about autism.

In the spring of 2000, doctors told us that Jared had autism. 
Until that moment, I didn't know anyone that had been diagnosed with autism.  The only thing I knew about autism was from a 1988 movie called "Rain Man". 
My life changed that spring day, and so did my understanding of autism.

We had a child who wasn't talking, who had behaviors that made it almost impossible to be out in public, and who doctors told us "would never _____" and that blank was full of so many things.
Autism entered our family's world that day.  And our autism awareness began to grow.

A few years later, I enrolled in a year long program called "Partners in Policymaking."  Parents and adult self-advocates join together for seven two-day sessions of advocacy training, resource development and skill building workshop led by state and national experts.
I can't begin to tell you how much I learned during that year. 
It was life-changing!

One of the most impactful moments was actually from one of the homework assignments. 
Our first homework assignment was to go and visit one of VA's state institutions. 
Yes, VA has institutions - very large segregated facilities that house people with developmental or intellectual disabilities. 
(By the way the Federal Department of Justice has since stepped in and has determined that VA violated federal law by needlessly warehousing people in institutions instead of providing adequate community-based services - and things are happening.  Slowly, but things are moving forward in this area).

So I visited one of the VA state institutions and toured around the facilities with a director from the institution. 
I was deeply impacted by my visit. 
In one room, in one building, I saw a young man - maybe in his 30's - who had autism. 
His life was in that room.  That was all of the community he knew.
I can't even describe what I felt as I stood and watched this young man - with autism - who didn't speak, who didn't look my way, who just rocked in his chair in the room in the dark.
All I could think - was this could be my Jared.
I was overwhelmed with saddness.

And I determined at that point that I would work hard to have Jared be a part of his community.

So through the years, I did just that.
I involved in him all sorts of things.  Sometimes this worked and sometimes it didn't. 
Autism can be like that.
I went into school and read books about autism and about everyone belonging to his peers.
I shared info on autism every chance I got.
I held fast to a decision that Jared belonged in his neighborhood community school.
The same school his sister and brother attend.
The same school that his neighbors attend.

Our family shares autism awareness with our community everywhere we go - all the time.
We share the good and the difficult parts of autism.
We share the joy of parenting Jared  and the pain of parenting a child with autism as well.
We share our hopes for the future and we share our fears of the future.
We are 24/7 autism awareness.

There are days, when we smile and say all of this intentional sharing "has been so worth it."

Jared's high school announced today that he was chosen as their underclassman student of the year!

Just one example of how Cosby High School is not only aware of autism through Jared, but is also ACCEPTING of autism.  An ACCEPTANCE that shows BELONGING!

This school, both students and faculty, have shown over and over again...
that they understand belonging,
they understand community,
and that they are accepting of differences.

We see it, in high school football students who accept Jared as part of the team,
encourage and talk with him as he cheers them on and fills their water bottles,
and who lock arms with him as they march the team onto the playing field.

We see it, in high school PE students, who are okay with a student with autism participating alongside them, as they provide natural supports for him to be successful at whatever activity is happening.

We see it, in high school basketball students, who aren't concerned in the least about having a "manager" that may do an odd dance, or hold his hand over his ear as his sensory issues take over, and who see him as a part of their team!

We see it, in high school teacher and coaches, who model acceptance and kindness..
Who go above and beyond each and every day and get very little recognition for all that they do..

This ACCEPTANCE , this BELONGING is so powerful.
It is world-changing!
It has truly had an impact on Jared and our family!
It carries over from school and spills out into the community!

And I know, years down the road, when these current students at Cosby find themselves interacting with others in their community with disabilities, whether it is autism or something else,
long after Jared and his classmates have parted ways,
these students will be reminded of Jared
and that will affect how they interact with others with disabilities.

We are all better together!

So today, as Jared rides "as a manager" on the bus from Cobsy to the Siegel Center with the girls' basketball team,
and sits on the bench with the Cosby Girls basketball team as they play in the state semi-finals...
and he high fives the girls
and cheers them on
and as they high five him back
and he tells me "mom, they need me"....

Today, as I sit in the stands,
I will wear my Cosby sweatshirt with a new kind of pride...
a pride in a school,
a community of students and educators,
who not only are aware of autism and what it is and its prevalence and impact,
but who also accept autism,
and embrace those who may be seen as different,
and celebrate what gifts a person with autism brings to the table!

Today we celebrate!

Coach Mustacio coming in and explaining to Jared what Student of the Year means!

Coach and Jared!  Go Titans Football!

Jared and Ms. Williams (his SPED teacher) celebrating the Student of the Year Announcement

More Student of the Year Celebration
Belonging with Cosby Football

Joining the Girls' Bball Team on the floor during the National Anthem