Monday, August 28, 2017

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."






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!