Thursday, June 8, 2017

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!!


 





Saturday, March 25, 2017

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!


 

Sunday, December 25, 2016

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.





Saturday, October 29, 2016

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!

Wednesday, August 24, 2016

Enough

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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!"









Tuesday, January 12, 2016

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.

Friday, August 28, 2015

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!