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.