Seventeen

17 years ago today, a little before 2 in the afternoon, I held a little 7 lb 10 oz newborn baby boy in my arms for the first time.
We gave him the name Jared Dale.
We imagined all the things that we would teach him and help him become.
Little did we know that he would teach us so much more.

He was such a GOOD baby.
He wasn't fussy, and was content most of the time.
He was very easy going.
And as long as he was wrapped up tightly with a hat on his head, he slept like a champ!

As the months went on, we noticed something peculiar about our little boy...
Jared was so very quiet.
Jared wasn't trying to talk.
In fact, he really didn't interact with us or his brother.

And then, he began to pull himself up and move around and.....WOW!
He was everywhere....
And into everything...
More than any child I had ever seen....
Constant motion...
Non-Stop...

We spent those early years in and out of every "-ologist" there was and were eventually given the name "autism" to describe the difficulties Jared was having.

We converted a space in our home into a therapy room.
We hired outside therapists to come in....
Several people, every day, for hours upon hours.

The therapy room, Jared's "work room" was full of flashcards and toys.
Jared worked every day on basic things
like sitting in a chair for a few seconds at a time,
to pointing to an object that he wanted that was put on the table in front of him,
to eventually pointing to an object that he wanted that was one of three objects on the table in front of him.

Then we went from real objects to pictures of objects - very small steps, many days and weeks and months. 
This is how my baby boy spent much of his toddler and preschool years.

And we saw glimmers of progress. 
One step forward and then a lot of waiting... but eventually he would take another step forward.

And one day, several months after he turned 4 - an incredible thing happened...
we heard a word!
A real word...
A real word that was intended to communicate something!

And then each month a few more words were added.  We actually kept a list.  At his 5th birthday Jared actually could voice and use correctly 19 words.
My favorite one was "mama".

On his birthday each year, I remember.
Today, I look back and think about all of these things and so much more.

Long ago, I could not even imagine what Jared would be like at age 17!  Life was too crazy, too hard, too...everything, to even think about those things for more than a fleeting moment.
And sometimes it was too difficult to think about the future and what it might be like.

And now, here we are.

Today he is 17!

And I know that we will spend this next year doing some of the toughest things yet. 
See Jared is now one year away from being 18.
18 is a big deal for everyone but ...
for parents of a child with a disability, there is a lengthy and daunting checklist of things that must be considered at year 18. 
So much and so many very HEAVY decisions to be made...
Things that no parent should ever have to think about.

BUT for today I am choosing to not think about those things, but just to celebrate where we are.

Today I celebrate the moments.
Moments that for many would just be an everyday thing not to be celebrated...
but for our family, moments that are miracles we have been able to witness firsthand.

Miracles.

Miracles....

Jared woke up after a good and FULL night's sleep.
He got himself dressed.
He got his own breakfast which included pouring his own juice.
He cleaned up after himself by putting his dishes in the sink and his trash in the trashcan.
He followed his daily routine of putting on deodorant, brushing his teeth and using mouthwash.
He opened his birthday present.
He said out loud with a huge smile "Wow!  This is great!"

And tonight, he will spend his 17th birthday in the most incredible way. 
In a way that might be seem so ordinary for many, but in a way that is an absolute miracle to us.

He will ride on a bus from Cosby High School with his "football friends" and the "other mangers" to the first football game of the season - an away game at Thomas Dale High School.
Jared - without mom, without dad, without an attendant - riding the bus with "his team."

He will be on the sidelines filling up the water bottles and cheering on the players.
He will say to them over and over "Come on Cosby football friends, you can do it!"

He will be smiling from ear to ear! 

See there is nothing better than the feeling of belonging...
the feeling of being with people who are glad you are there...
nothing better than spending your birthday with those you consider friends and nothing better than spending your birthday doing what you love to do! 

Happy Birthday sweet Jared!

Thank you for showing us each and every day how everything in life is truly a gift!

Who is Jared?

Once a year my family celebrates Jared.
We celebrate who he is.
We celebrate all he has accomplished.
We celebrate that we are still moving forward despite whatever autism has brought our way.
We celebrate bigger than we celebrate on Jared's own birthday.
And boy does Jared celebrate too!

That day is the Saturday before Memorial Day each year - 
The day when the 5K Run/Walk for Autism happens.

When our family first began participating in the 5Kwe were just figuring out what autism was.

We knew how it affected Jared - no language, intense behaviors, all sorts of social difficulties.

We worked hard to keep our head above water each day, in a world that continually felt like it was trying to drown us.

But there was something about being at the 5K and feeling the acceptance and belonging that we felt from the people that were there.

And so each year we continued to be a part of that event.
In the beginning years, we participated as a family of five.
Walking together... pushing one or two in a stroller.
And then one year the Autism Society announced it was going to allow people to sign up in teams, and that year - Jogging for Jared began.

Over the years, as our family has invited those that are in our personal community, but not necessarily directly impacted by autism to join us at the 5K.  We have invited them to join us in that special day.
A day that not only raises funds for an incredible organization to be able to provide supports and services in the local area -- but a day that also, provides a day for the autism world and the community to come together.
A day that is about awareness...
inclusion...
community!

This year, as I was waiting at the 5K finish line for Jared's 50 yard dash from the back of the motorcycle to cross the finish line, a bystander stopped me and said,
"Excuse me, can I ask you a question?  Who is Jared?"

She continued, "Everywhere I look I see people whose shirt says 'Jogging for Jared' like yours does, and I just have to know who is Jared?"

And she was right. 
There were 98 people at the 2015 5K who were wearing that blue tie dye shirt that said "Jogging for Jared!" And dozens of others who were supporting us in various other ways at other places that day.

People who were...
family
basketball players
football players
coaches
college students who met Jared last year in high school and who returned to be at the 5K
teachers from High School, Middle School, Elementary School and Preschool
neighbors
church friends
motorcycle friends
librarians
pediatricians
co-workers
football managers
friends.

People who each have impacted Jared's life in some way, and people whose lives have been impacted by Jared!

Tears filled my eyes as I told her that Jared was a 16 year old with autism who would be coming through the finish line here any minute, to receive a trophy and hug from his mom.  That's all I could tell her in that moment.  My emotions overtook my words.

I could have told her so much more...

I could have said JARED IS....

a brother
a basketball and football manager
a high school sophomore
a friend
a hard worker
a person who fights anxiety every day
a kids who absolutely loves school and loves his teachers
an advocate
a person who is very afraid of dogs and cats and unexpected noises
a student of the year
an avid VCU women's basketball fan
a son
a person who can bring out the best in others
a person with autism
a person who loves and accepts others unconditionally
a part of his community!

So many years ago I put in writing our family's vision/dream for Jared.  We decided long ago to set  short and long term goals to guide us as we navigated this thing called autism.   The written vision is long and every time I read it, it brings out my rawest of emotions.

Here are a just a few lines from our vision for Jared which was written when he was around 4 years old, and updated each year since:

Some of the short term dreams we have for Jared...

being invited over to a friends house to play,
being invited to birthday parties,
communicating needs, wants, and illnesses to others.
We see Jared as part of the community, not just someone who comes in and out of it
from time to time. It is important for him to be around peers who model age-appropriate
social and communication skills.
Some of the long term dreams we have for Jared...

develop a better understanding of nonverbal communicators and expand his social
language in all settings,
read at a literate level,
be considered a good friend,
hold a job,
live as independently as possible as an adult.

Tonight my heart is full!

For tonight I will sit and just embrace the moment and be forever grateful for a community embraces our dreams for Jared too.

No Strings Attached

Jared struggles with social skills and communication skills and anxiety. 

That is how autism affects him.

That makes most social situations pretty tough.

That makes friendships even tougher.

Yet once in a while we run into someone who "just gets him". 
Someone who appreciates Jared just like he is. 
Someone who accepts Jared just like he is....
And likes Jared for Jared!
Someone who befriends him and doesn't expect him to conform to the world's expectations of what a friend looks like or acts like.

We have been fortunate to find a few of these types of people in Jared's 16 years of life.

One of those people is a young lady named Shanice who plays for the VCU Women's bball team. 

Shanice and Jared are friends....

True friends with no strings attached.

She shared about her friendship with Jared in this project for one of her classes -

As we near the end of autism awareness month...
I hope this video not only sparks awareness for what can be,
a hope for what can be possible,
but also an appreciation for the fact that
sometimes the best gifts in life can come from the most unexpected places. 

An appreciation that different is okay...
and an acceptance that autism or not,
disability or not,
everyone brings something to the table that can benefit someone else.

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."
TODAY IS ONE OF THOSE DAYS!

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

Sometimes...

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.