Sunday, January 4, 2015


I talk to many parents of individuals with disabilities -
many parents of individuals with autism...

and throughout the years there is one nightmarish thought they all seem to struggle with...
that I struggle with...
"What will happen to my child when I am no longer here?"

That is the question that keeps me up at night.
It is the question that I can't think about too much, or it paralyzes me.
It is the question that I don't want to think about but that I must think about, as I know I will not always be around.

It is the question that takes me to some of the darkest places.
It is the question that I spend my days trying to find an answer for.

Each year when my birthday comes around, as it is about to, I am reminded that my days - like everyone else's - are numbered.  I don't know what the number is.  But each year as I age, I am reminded of this dark question..

"What will happen to Jared when I am no longer here?"

"Who will love him like I do?"

"Who will make sure he is okay?"

This question shapes me more than anything else in my life.

I spend my hours, days, weeks and years working to CREATE the answer to that question.
Working to be Jared's advocate, and secure his future through my actions each day.

I plan.

We have met with lawyers and estate planners.  We have put into place things like a "special needs trust" and talked with family and friends about our plans and wishes.

But there is another side to this as well.

I work to find who in this world will show Jared unconditional love each and every day.

I work to build a community around Jared.

A community that knows him.

I talk about his strengths and his needs to those around him - so that they have a better understanding of who he is.  I take him out into the community and get him involved with others.

It is not always easy.
Autism is not easy.
It takes LOTS of time.
Many times I would rather stay home or do something else.
It takes being willing to have tough conversations.
It takes being willing to risk that people may stare,
being willing to risk that some people may not accept him.

But within that I find HOPE.

I find those that do accept Jared just as he is.
I find those that do allow him to be a part of their community.
I find those that begin to love him unconditionally.
And I build on those things.

This past year we have found some of that community through sports of all things!
For those of you who know me, you know I am not sporty.
Give me a book over a ball any day.
But we have had the opportunity to build a community for Jared around sports!

He helped as a "manager" for his high school football team.  And the team embraced him in so many ways!  In fact many from the community got to know Jared through football and through the team.
We went out to a local pizza place on Friday night, and a young man working there -that neither my husband or I know - waves and speaks to Jared.
And the coaches and other managers are already talking about Jared being back next year.
Community building.

Now Jared is helping as a "manager" for the girl's varsity basketball team at his high school.  He LOVES it!  And the team and the coaches are incredible!  They bring him into that community.  He attends practices and helps retrieve basketballs.  He joins in the circle of players, and puts his hand in the circle of players' hands as they count off "One, two, three... TEAM!"  He sits on the sidelines with the team at the game - giving high fives, helping with water, and cheering on the team.
He is a part of that group. 
Community building.

Speaking of basketball - Jared has become the VCU Womens' Basketball Team's biggest FAN!
He doesn't miss a game!
You will find him at the home games sitting behind the VCU team - as close to them as possible.
We have gotten to know the players and the coaches!
And they have gotten to know Jared.
The team and their games are a part of Jared's community.
In fact the team gave Jared an official VCU basketball sweatshirt (one's that only the team has) for Christmas.
They accept him for who he is.
Community building.

One step at a time.
Adding to Jared's community.
Adding people who know him - his strengths and his weaknesses....
Adding people who support him...
Adding people who care about him...

These types of things are not easy for Jared or for me - they require much RISK.

Sometimes it would be much easier to not be in the community.
Sometimes - autism gets the upper hand...
Sometimes - a meltdown...
Sometimes - lots of self-talk...
Sometimes - difficult behaviors...
Sometimes - we are just tired...

But SOMETIMES we see things like this....

At the end of the day, none of us know how things are going to turn out.

And so we do our best to prepare today for the possibilities of what may be  -  TOMORROW.