Godspeed

Riding in the car taking Jared to work gives me a daily chance to spend 1:1 time with him.  Most days the ride is spent talking about upcoming football or basketball games - him telling me who is playing who and when (and of course including the name of the coaches and all sorts of information on the team's mascot.)  Of course his talking is VERY fast, as though who know Jared know, and his speech is often choppy and difficult to understand.  You have to know how to read between the lines.

Today the traffic was light, due to schools being closed, and so we arrived at Gold's Gym a little early. I pulled into the back part of the parking lot and we waited for it to be 7:58am, because of course you can't go into work at a different time.  Jared's autism demands routine.

When the clock changed to 7:58am, I pulled up near the door to let Jared out.
He looked over at me and said "Godspeed mom."

My mouth dropped open!!!

I said "What did you say?" and Jared repeated "Godspeed mom."

I asked Jared, "What does Godspeed mean?" and he replied "good luck on your journey."

(MIND BLOWN)

So I asked him where he heard that from.  Jared replied "From Chesterfield County graduations."

A little background here - one of the things that Jared watches over and over again on YouTube is our county's graduation ceremonies.  He watches them ALL.  He looks for kids he knows.  He looks for himself and the year he walked the stage.

But Jared does more than watch.  Now I know that he listens!  Really listens and he understands some of the things he is hearing from the speeches.  Not only did he learn several new words by doing this, but he used them correctly!!!

After Jared walked into the gym, I had to pull back into a parking spot and process this some. 

See, Jared did not talk at all until he was 4 1/2 years old.  He struggles A LOT with anything verbal.  His vocabulary is very limited in general.

Here is the kicker - many medical professionals have told us along that way that Jared
would not ________
or could not ________
(you can fill in the blank with so many things and a large amount of the things would have to do with language and communication.)

But today, at age 20, Jared showed me that the professionals left out one important word... the word YET!

There are always opportunities for growth.  There are always opportunities for good things to happen.

Jared reminded me today that he will continue to learn. 
He reminded me today that I should never go up. 
He reminded me today his journey is no where near over.

I hope that he helped remind you too.
Whatever journey you find yourself on...
Godspeed to you!
Best wishes of success on your journey!
And may you know, that your journey is not over.

FOCUS

Some days tiny blessings just show up where you least expect them.

Saturday mornings typically mean grocery shopping - a task that I don't really enjoy. Today the aisles at Walmart were extra crowded today too.

I pushed my very crooked cart (of course I have one that ends up with a funky wheel) down the row to get bottled water and I see two young men stocking shelves. These two guys happen to have been involved with Cosby football a few years ago. I said hello and they said to me "aren't you Jared's mom?" They told me how they were going to college and working early mornings stocking shelves. One is still playing football and the other is hoping to do that this next year.

One of the young men then said to "Jared really impacted my life. I still remember the first time he went with us on an away game on the bus." He continued to share about the difference it made for him to have had Jared involved with the team at practice and at games. He asked to write his phone number on my grocery list, and said to please call/text if Jared ever needed anything!

We have had some very rough days around the Burns house lately, due to Amber's health issues.

And on different scale all together, but very important in Jared's world, Cosby football has had some rough Friday nights. Last night's game was a heart breaker. There were some tears on the sideline (at least from some of the managers) and that included Jared.  He loves the coaches, the players and the managers and he felt their heartbreak. He knows how hard they have worked and some times the score at the end of the night doesn't go they way you would hope.

 

It is very easy to go down on a road of negativity at times. It is easy to think about the bad things happening.

Today I was reminded that the scoreboard doesn't always show the entire outcome of a game.  Today I was reminded that even the toughest of days can have some rays of sunshine - it is just a matter of what I chose to FOCUS on.

Times like today at Wally World help me readjust my thought process!

"... whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things." Philippians 4:8

Dream Big - Work Hard

Nineteen years ago today, on the last Friday in August, our sweet baby that we named Jared was born a little before 2 in the afternoon.  Hard to believe it has been 19 years.

Those early days were tough.
Having two young children that are 18 months apart is not easy for anyone.
Add autism into that mix and life gets real interesting...
(You can read more about those early days and Jared's diagnosis starting with this blog post, and then clicking newer post on the bottom left of the screen to continue.)

With the diagnosis of autism... we had to let go of many of our original dreams for Jared.

Dreams like...
college,
playing sports,
driving,
school dances,
and so many others.

And we have grieved all along the way.

Troy and I eventually began to dream new dreams for Jared.

These dreams were centered around:
safety,
employment,
independence,
meaningful relationships,
and community.

And we shared these dreams with others so that they could dream with us.

One of those dreams we began talking about when Jared was about 5 involved employment.

Even then, I knew that MANY adults with autism are under-employed or unemployed.
(Over the years I have come to really know the harsh reality of individuals with disabilities and employment.)

So from age 5 on, we began narrowing down our efforts, the therapists' efforts and the schools' efforts to do all we could do collectively to prepare Jared for meaningful, competitive employment after high school.  Those who know Jared know that his autism creates great difficulties for him in the areas of social skills, communication skills and anxiety -- large scale difficulties.

So since age 5...
very strategic planning...
very strategic efforts...
and always asking the question "will this (activity, skill, lesson, etc.) help prepare Jared for meaningful employment?"

And we ALL worked toward finding opportunities where Jared could have hands-on experiences that would one day lead to possible employment.

There has been an entire village of INCREDIBLE people involved in this dream:
teachers,
instructional assistants,
coaches,
athletic directors,
students,
attendants,
therapists,
family,
friends,
community,
agencies,
and Jared.

Something amazing (and in my eyes miraculous) has happened very recently in Jared's life because of the opportunities and experiences that a village of people have helped provide for him.
Jared has developed a love for football and basketball.
He has learned these sports.
He has teams he follows and watches their games on TV or in person.
He will tell you his 5 teams - in this order -are: Cosby, Virginia Tech, NC State, VCU and now recently added University of Richmond because that was Coach Mutascio's team.
He knows the schedules of all 5 of his teams.
He knows who each team beat last year and who each team lost to.
And he knows the city and state that all teams in those conferences are from and the name of their mascot.
And he will tell you all of that info if you open up the conversation.

All of this has led to Jared taking ownership of this employment dream that Troy and I have for him.  Jared has decided that not only does he want a job but that he wants a job that is in the sports world.
He is very clear about that with anyone who asks.

In April of this year, we started working with several agencies/services for individuals with disabilities - DARS (Department of Aging and Rehabilitative Services),  The Choice Group, and his DD Waiver services.  We began actively looking for and applying for part-time jobs.
I knew it was going to be hard - but I didn't know how hard. 

Over and over -
doors were shut,
calls were not returned,
job offers were rescinded when people met Jared or found out he would have a job support person with him on the job.
Over and over the answer was no.

We continued to hold to our dream - but reality was saying that this dream may be way harder to reach than I had ever imagined.
In late July, Jared began once again helping as a manager for the Cosby Football team.
A couple of weeks ago, the weather was not so good and the football team went into the weight room to work out for a while before practicing on the field.
Jared joined the team in the weight room and watched as they lifted, did some cardio, and exercised.

The very next day, which I don't think was a coincidence, his job support person called and said she knew about a job opening at Gold's Gym Westchester that she thought Jared should apply for.
I drove Jared over to Gold's Gym that Thursday.
He went into Gold's Gym with his job support person while I waited outside.
They both came back out a little later and let me know that Jared got the job!
Jared told me it was like the weight room at Cosby - but it was bigger!  He liked it!
He had found a job that in his mind equates to working in the sports world because it was something he saw the Cosby football players doing just a few days earlier!

On Monday, August 21st, Jared began his work at Gold's Gym located in Westchester Commons.
He is there each Monday through Friday from 8am to 11am.
He spends time vacuuming, cleaning equipment, wiping down lockers, removing trash, etc.
The staff at this Gold's Gym location has been fabulous and very welcoming of Jared.
They have shared with me how glad they are to have Jared working with them.

Everything fell into place with this very quickly and it is still hard to believe really.
But I am so thankful.

I am thankful for everyone who helped us get to this place.
I am thankful for teachers and instructional assistants who worked alongside Jared every step of this journey teaching him so much.
I am thankful for a rainy day that put the football team in the Cosby weight room.
I am thankful for the Cosby coaches and staff who helped instill a love of sports in Jared and were always open to possibilities.
I am thankful for the staff at Gold's Gym Westchester who saw ability and not disability.
I am thankful for the job support offered through The Choice Group and Jared's DD Waiver.
I am thankful for dreams and I am thankful for constant effort.

We have our fingers crossed tightly and continue to pray that all will work out.
I know that autism can always make even the best things difficult.
I know that any situation, where autism is involved, can quickly change.
I find myself being cautiously optimistic - but more cautious than optimistic - as it seems to good to be true.
But even if this takes a wrong turn - we made it this far.
And we will continue taking steps forward.

So today -
as we celebrate Jared's 19th birthday,
we will also celebrate the fact that a long time dream has come into focus.

Happy Birthday sweet Jared!
Keep dreaming sweet boy!

"Dream big, work hard and surround yourself with good people."

Today was one of those days....

Today was one of those days.
A day that I have imagined since Jared was a toddler and first diagnosed with autism.
A day that I have thought about and wondered exactly how it would play out.
Today was graduation day for Jared and his peers at Cosby High School - the Class of 2017!

Long ago, when Jared was 5, we pushed for Jared to be in classes in his neighborhood school - the school where all of the kids in our neighborhood go to school.  It was important to our family that Jared be seen as a part of his community and not someone who just comes into the community once in a while.

So today Jared stood among the students at Cosby High to participate in the graduation ceremony.
Many of these students have known him since he was in Kindergarten.  They have grown up together through elementary, middle and high school.  He has a community.  And that has made a HUGE difference in Jared's life.

As I sat and took it all in today, I could not keep the tears away.
These tears were from way down deep. 
These tears were ones that represented every emotion possible.

Today I felt Gratitude....

So many people have played a part in Jared's many accomplishments.  Jared is a young man with pretty significant autism. It has truly taken a village of teachers, aides, therapists, family members and friends to help us get to the place where he is today.  I am forever grateful for our village.
I am grateful for the skills that Jared works so hard to obtain - skills that others may not think twice about - but skills that he had to work on for so many years in order do what he did today. He walked in with the group. He sat in a chair through a very long ceremony. He took off his cap when appropriate. He stood when he was supposed to. He walked across the stage and shook hands with some people he didn't even really know.  All of these are skills that required much work on his part, and represent just a few of the small things that I am so grateful for.
I am also so grateful for a community that surrounds my son - a community that accepts and includes him.  He has FRIENDS and that is what we have wished for him for so very long.  You see, we can provide so many things in life that my son needs, but we cannot give him friends.  And as I watch him today as he participated in this culminating event, I knew that he truly has friends.

Today I felt Fear....

So many fears encompassed today as well.  I fear my son's future.  I fear that he will lose the community that he has built around him.  Kids grow up and go their own ways - college, jobs, marriage, kids of their own.  But that is not the path Jared's life will most likely take.  Jared is not going to college next year.  Instead he will be back doing more high school classes and continuing to work on learning employment skills, social skills, reading skills, math skills and independent living skills.  His peer group will go a different way.  And his adult world will not offer the same opportunities and support that his many years in school have offered.  I know that I will continue to tirelessly work to help him connect to the world around him, but I am afraid that will be more difficult as he ages.  I know we will continue to look for ways for him to be employed in his community, as we fear him being at home all day everyday with nothing to do.  I fear him growing older because that means I also grow older - which reminds me that I will not always be around - and I fear what will happen to him when I am not.  In fact that is my biggest fear of all.  And today brought me to that place once again.

Today I felt Grief....

Yes, grief.  Each time when Jared reaches a milestone age/event there is a little grief that I must deal with.  This is just part of our life.  When a child is born we begin to dream about their future.  That was no different for Jared.  When he was born, we envisioned him as a young adult, and thought of what his life might look like. Today I had no choice but to come to face to face with the reality that Jared will never receive a high school diploma.  A reality that was not a part of my dream for my infant son.  But it is our reality.  Today that reality (like so many others over the years) caused my heart to grieve.

Today I felt Hope...

As I watched my son, I was reminded to never lose hope.  I was reminded of a time, when Jared was three and I was asking about skill that Jared was struggling to learn,  and a doctor told me "stop working on that, he will never do that, you just need to accept that he will not."  I was reminded that I chose not to listen to that advice, but instead chose to have hope.  I remembered the great strides my son has made and how many of those are because we chose to have HOPE.  I watched him smile and clap and cheer for his classmates.  I watched students cheer for my son as he took his turn walking.  My heart repeated the words "Never give up.  Don't ever give up!"

Today was a day that reminded me of
where we have been,
where we are,
and where we hope to be in the future.

I continue to be full of emotions, and will be processing them for days to come.

As for Jared ....
well....
He can't stop talking about today and his seniors and being a Cosby Titan!!  No one loves Cosby more than he does.

He also has reminded me - many, many, many times - that he will be starting football season in July with the Cosby Titan football team.  "That's my team and they need me!" he says.  And yes, thanks to some of the most incredible people I have ever met, Jared will be back on the Cosby sidelines for football and girls' basketball next year, and he will be happy!

Whereas I felt so many emotions today, I can tell you that Jared felt just one...

Jared felt HAPPY!
If you ask him about today he will tell you "It was GREAT!"

And he is right!!

 

Never Give Up

Reality for our family is that Jared will not leave high school with an official high school diploma.

Years ago we came to the realization that Jared's autism was going to make it next to impossible for him to earn a diploma.
That piece of paper means quite a lot.  Many people take it for granted and just assume that everyone will leave high school with a diploma.  Many people don't realize how much has to actually be done to receive that diploma.  The academic requirements that must be met to get the diploma are things that are out of Jared's reach.
Jared's difficulties with communication and language cause him to not be able to take the required academic classes and not be able to score a passing grade on the required end of course tests.

So we decided, back when Jared was in middle school, that in addition to continue to work with him on language, communication and functional math skills, we were going to need to really focus his learning on social skills and employment skills.

Our family's goal for Jared was that when he leaves high school (at age 22 by the way) that he will have a job - and a job where he would be paid the same pay that someone without a disability would be paid.

We have worked on this since early middle school, and will continue to work on it for years.

The percentage of adults with disabilities that sit at home all day, every day after high school is staggering.  We work so hard for Jared what is called "A Life Like Yours."  This simply means, a regular life, like any person his age would be leading.  Not a special life - just a normal, everyday, regular life.  A life where you have friends.  A life where you work.  A life where you are a part of the everyday community.

Some days it seems like we are not getting very far, or that we are taking steps backward.

And then there are days like today.

Today I am able to share...
Jared has a part time JOB!!!

A real part time job.  One where he gets paid actual minimum wage.  One that he will receive a paycheck for the work that he does.

Jared is now an official crew member at First Flight Creations (a division of Kaldy Services, Inc.)!!

First Flight Creations is lead by John and Christine Kaldy.  The Kaldy's hold the belief that all people have talent and can contribute. That shows in everything they do.

First Flight has these four tenets, much like their logo with four points of a compass:
Never give up!
Steady progress to create ongoing value added work and learning opportunities while having fun!
Engage the community to support real individuals with special abilities!
Work with key stakeholders to become a for profit venture donating a percentage of sale to support related organizations!

How awesome is that!  

These words ring so true in our life with Jared ----
Never give up,
Steady progress,
Engaging within our community.

Never give up!

Jared still has autism.
Jared still needs a lot of support.
Jared still struggles with many things.

BUT....

Jared went to work today, and worked alongside his co-workers to make some beautiful wooden creations that will be sold at vendor fairs, farmer's markets, and at local stores that house what First Flight calls "Pop-Up Shops" (like at Maglio's Pizza.)

Tonight we celebrate all of the little steps forward that have landed us at this place today.

Tonight we are reminded to always believe in POSSIBILITIES!

Filling in the nail holes with putty.

Using the nail gun with Mr. Kaldy.

Using the nail gun some more.

Finished bunny boxes that are ready to sell.

Check out these cool items from my new tool kit!

 

Christmas Spirit.... Virginia Tech Style

Loving it!

"It is the personal thoughtfulness, the warm human awareness, the reaching out of the self to one's fellow many that makes giving worthy of the Christmas spirit." - Isabel Currier

Autism makes for some difficult times around the holidays.
Very difficult.
But .....
Sometimes...
It helps us see things in a completely different way.
A way that maybe, just maybe, might be a lesson for us all.


Jared typically doesn't ask for anything..... ever.
He doesn't ask for toys.
He doesn't ask for candy.
He doesn't ask for shoes or clothes.

The only time we can get him to tell us something he wants us to buy him is when we start talking about Christmas.
We will start asking him in early November, what he would like Santa to bring him.
(Yes, Jared still 100% believes that Santa brings a Christmas present to those people who are on the NICE list.)

So this year, just like year's past, we begin trying to get Jared to tell us something he wants for Christmas.

Usually he tells us some sort of video game or movie... but this year that didn't happen!
This year he says, "I want a Hokie Stone Uniform."

Since being the manager of the Cosby football team, Jared has really started to LOVE football!
His two favorite football teams are Cosby (that's his favorite) and Virginia Tech.
Of course he is on the sideline of the Cosby games on Friday nights, and then on Saturday's he is in front of the TV watching his other team - the Virginia Tech Hokies!
During the week, he watches clips of past VT football games on YouTube.

This season, his favorite game was the Battle of Bristol - when VT played Tennessee.  Unfortunately the Hokies didn't win that game, but that didn't change how much Jared loved that game.  He absolutely LOVED the special Hokie Stone jerseys that VT wore at that game.

And so when we asked Jared what he wanted for Christmas, we knew what he was talking about when he said "I want a Hokie Stone Uniform."
He wanted a jersey/shirt like the Hokies wore at the Battle of Bristol.

However, when I began searching for this jersey in November, it was no where to be found.
I searched the Internet and found that they used to sell them at Nike.com but they no longer had them.  I found one 3XL for sale on eBay but I knew my sewing skills were not good enough to turn a 3XL into a size Large.

I tried to talk to Jared and see if there was anything he thought he might want Santa to bring him.
But his answer never changed.
A Hokie Stone Uniform was all he wanted.

Finally, I contacted Nike and after several tries, got a live person on the phone, who informed me that they had no more, and didn't think they would ever have anymore.
One and gone.

Once again I went back to Jared, and tried to convince him that he might want something else from Santa.
I shared that Santa may not have any Hokie Stone Uniforms left and may not be able to make any new ones.

Jared would just say, "Santa will do it", or "I am on the nice list and Santa will get it for me."
His belief never wavered.

As a last ditch effort, I decided to contact Justin Fuentes' office at Virginia Tech.
I emailed and asked if they knew anywhere that might have a Hokie Stone Jersey.
I explained how much Jared loves VT football
and how this item is the one thing
the only thing
that he wanted for Christmas.

Within a few hours, I got an email back, with the name and phone number of someone to call.
I called and was then connected with a wonderful gentleman who contacted his buyer and long story short...
within 24 hours
a Hokie Stone Jersey
size Large
was on its way to our home.
I am incredibly thankful for the people that helped make this possible - as it was out of my reach to make it happen.

So this morning, the first thing Jared went to when he woke up was his stocking.
He pulled out the candy and quickly laid it aside.
He dug down deep into the stocking and pulled out his Hokie Stone Jersey.
He immediately put it on and his face lit up as he shared, "Santa brought me my special gift!"
That smile...
That faith...
You could see it all over his face.

In Jared's world, he sees things as very matter-of-fact.
His faith in the things he believes to be true never falters.

Oh, if I could live my life more like that.
To live a life where you trust beyond trust that good will always overcome evil...
That people will always do what they say they will do...
And to always assume the very best in people.
Simple....
But so difficult at the same time.

As we end 2016 and enter 2017...
may we each not waiver in the things that we know to be true,
may we  be people who choose to believe the best about those around us,
may we be willing to step outside of ourselves and lend a hand to those in our lives each day.
may we each take with us some of the Christmas Spirit that was present today and carry it with us throughout the year.


And of course.... Let's Go.... Hokies!

Jared turned on the YouTube clip of the Battle of Bristol game,
so he could stand next to his Hokies and of course Justin Fuentes.

Magical Moments - Forever Grateful

Last night was magical!

It was "Senior Night" at the Cosby home football game.
Since this is Jared's 4th year at Cosby, he is considering himself a Senior as well. 
And he is very proud of his senior standing. 
He will tell you very quickly "I am an senior" - (which he pronounces as sing-ner by the way.)

For the past several years, Jared has been a manager for the Cosby Varsity football team. 
Starting at the end of July, he joins the team for daily practices and is always on the sideline for the Friday night games once they begin.
It has been a huge opportunity for Jared to grow and learn.
Jared is anxious about most things in life, and quick to avoid conversations of any kind.
He struggles with verbal communication and social situations.
When he first started with the football team, Jared would not attend practices without me or his hired attendant being there.
He would ONLY go to home football games.
He would have to leave at halftime.

So much has changed over these years.
He even rides the bus with the team to away games, and he is never going to leave a game even a second before the game ends.

But you would never have guessed where he started if you saw him last night!

He chatted with everyone around him as we waited in line with the rest of the seniors to be introduced to the crowd.
His smile COVERED his face. 
Autism took a back seat.
He walked down the track to claps and cheers from his peers as his name was called. 

Then one of the senior football players ran over and said come on Jared, we need you. 
He took off and joined up with all of the other senior football players in a group photo.
Right in the middle of the group!
It was simply amazing to see.
There he was ---
loving life,
participating in his community,
and being accepted for exactly who he is.

It was completely magical!
You could feel it.

And Jared's face showed that he felt it too!

And it didn't stop there!

Jared was asked to be a Team Captain at last night's game. 
I don't even know what all goes into someone being chosen to be a Team Captain for the game, but I do know it is a HUGE honor to be chosen.
I watched the other Captains walk with Jared to the center of the football field and saw Jared participate in the coin toss before the game. 
I saw him shake hands with the other team's captains.
I watched him look around from the center of the field and take it all in.
I could see his JOY!

What was even more powerful in that moment, was that I could see the JOY of his teammates, the coaches, the other managers, and the crowd. 
I could see it on their faces.
The magic of that moment affected everyone.
Everyone that saw it, knew this was one of those moments to not forget!

Throughout the night Jared hung out by the water table.
He cheered.
He danced.
He chatted with and encouraged players.
He gave fist bumps and high fives.
And he danced some more!

First thing Jared said when he got in the car last night after the game was
"Coach Mutascio told me I AM a Captain tonight!  I was a Captain for my Cosby Titans!"

A football coach does many things for his team, many of which I will never understand completely since it involves the mechanics of being a football player.
A coach teaches things like
different plays,
how to run routes,
tackling,
improving all sorts of skills.

But in watching football these past few years through Jared's eyes, I can absolutely tell you that the coaches at Cosby do so much more. 
They change lives! 
They change communities!

They teach...
the true meaning of team,
keeping the game and life in perspective,
character,
and integrity.

It was evident that whether Cosby won or lost the game last night (they did win by the way),
that there was so much more that had already been won by everyone.

My son is a different person today than he was three years ago.
He has a confidence about him that was not there before.
He believes in himself and knows that he can contribute to his community!
Life changing.... and certainly.... magical!
And not just life changing for Jared, but for everyone involved.
Even opposing teams and their coaches have approached me and shared Jared's impact on them, and the impact that the Cosby community's inclusion of Jared has had on them and their team!
Far reaching impact!

Cosby, we can't thank you enough.

You look past autism and value Jared as a person.

Our family is forever grateful.

"To the world you may be just one person, but to one person you may be the world.”

 Taking the Senior walk with dad!  Look at that smile!

 Coin toss with the Captains.

 Jared with his friend Hannah!

 Just a little dancing and celebrating!

Enough

 

Well here we are.

Just a few more days and Jared will have his 18th birthday.  And by a few, I mean 4 more days from now.  So not very many at all.

I can't believe we are here.

Early on, when Jared was first diagnosed with autism, I felt like we had so much time before he was an adult.
But man, did that time fly by,
and here we are.

I have dreaded this day for as long as I can remember.

There is something about saying, well he is still a ...
toddler...
child...
teen...
But now we are a few days away from saying he is an adult.

So many things scare me about that!

It means school services will end in the not so distant future.
It means the social circle that Jared has built in high school, will go off to college and off to find their own place in the world...while Jared will still be with his family here in his hometown, still needing support day in and day out.
It means that we will be in the adult services systems that are even more complicated to more involved than any system we have been involved with so far.

It also reminds me that I am getting older, and like it or not, I will not always be around to make sure Jared is safe and okay.  Not something I like to think about, but something that I MUST think about and always plan for.

I have dreaded this day and it is almost here.

Actually, I will be glad when Sunday comes and goes, and maybe I will not think about these things as much as I do today.

All of this weighs heavy on my mind if I let it....
and yet seeing my sweet boy, reminds me that no matter what ... everything will be okay.

The beauty of autism in this situation is that Jared doesn't have any real expectations of his 18th birthday.
Monday will come and he will not even care that he turned 18 on Sunday.
It will be another day.
Another chance to live life.
Another chance to be content with everything.
And he will be happy because he gets to go to football practice that afternoon and see his "football friends." 

He constantly is reminding me by how he approaches life, to not worry about things, and to enjoy the day for what the day is!

We have asked him multiple times over the past month, what he wants for his birthday.
The answer is always the same "I have enough."
"I have enough, mom."
"I have enough, dad."

"I have enough."

Happy Birthday sweet boy!
You continually show me how to live!
I love you always!
And because of you, your brother and sister and your dad..... 
"I have enough too!"

Happy?? New Year

It is hard to believe that it is January 2016.  
A New Year should bring excitement and refreshment.... but 2016 does not do that for me.

See this year my sweet Jared will turn 18. 

18!!

And it scares me to death....

I can't think about it too much, because then it becomes all I can think about.

But I also have to think about it, as there is so much to do to prepare for that birthday.

At the age of 18, Jared will officially have the right to vote - and maybe that's not so bad.  There are times when I think he knows more about what's important in this world than most people do.

Age 18 also brings with it many other rights that most parents don't think about, but that I must think about.....
for example.....
the right to make your own educational decisions
the right to make your own medical decisions
the right to enter into a legal contract
and more.

As a family, we are having to think about and have some really tough conversations. 
Conversations that will have to turn into decisions this year. 

Here is what I know about Jared -
... he currently needs help making informed decisions, and will probably need that for a long time,
... he currently would always choose "NO" on any question of any type of medical procedure, even if it was a lifesaving procedure, because of his lack of understanding and because of his fear of the unknown.

In the past few years, I have had to learn some things about power of attorney and guardianship.  Neither of which brings about thoughts of rainbows, or unicorns, or smiley faces.

Since the time Jared was first diagnosed with autism, I have found myself experiencing times of grief.
(As you know, we have had much to celebrate in Jared's life!  But there is also another side to all of that - not to take away from that - but to share the reality of living with a child with autism.)

When Jared was young I grieved the type of relationship that I had dreamed Jared would have with his older brother and younger sister.

When Jared was in elementary school I grieved the childhood I wanted him to have - the one with friends, and sleepovers, and birthday parties.

When Jared was in middle school I grieved the educational goals that we had to decide to give up, as we moved Jared from the SOL track in school (being able to get a diploma) to the "other" track (leaving high school with a certificate of completion).

Now as he is in high school I have grieved the thoughts I had of him dating, driving, and planning his college choices.

2016 will bring about a new grief - as we have to make choices around what types of decisions Jared will be able to make on his own as a legal adult and what of those rights we as his parents will have to have taken away from him.  A process that involves lawyers, a court, and literally suing your own child.

Just one of those tough pieces of the reality of autism in our family.
Tough decisions....
the kind that literally make your heart ache.

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.