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.

Friday Night Lights

So this year in high school, Jared has been one of the "managers" for the Cosby Titan Football team.

And he has loved every minute of it!!  Well except for the beginning...

Like everything else that is new, it comes with anxiety for Jared.
A huge amount of anxiety.
And football was no different.

As a matter of fact, the first week of this new experience had both Jared and myself in tears.
Autism was winning, and we were ready to quit!

But we decided to try it one more week.

And slowly the anxiety, both Jared's and mine, began to go away.
Day by day, things started to improve for Jared.

And now it is November.

Now we find ourselves, wishing that football was a year round sport.
(Except in the winter we would want it to be played inside where it is warm).

For the past 10 weeks or so, Jared has spent his afternoons at football practice, filling up the water bottles for the football team.

What a gift this has been for Jared!

It has been an opportunity for a "regular life".
Something that the ARC calls "A Life Like Yours".
A life that is not full of "special", which often means segregated, things.
But a life that is just like anyone else's life.
A life with ups and downs.
A life like other 16 year olds.
Cosby football has given Jared an extraordinary "regular life" experience.

There are so many people that have helped make this possible for Jared this fall......

His Teacher, Ms. Williams.
She made this opportunity happen.
She believes that Jared can be successful at anything, and is always willing to help open doors for opportunities.
She is always willing to ask "What if?"

The Coaches.
Throughout the season, these men have modeled acceptance and inclusion.
At the very first practice, they called Jared out on the field and had the team huddle up around him, as they introduced him as one of the "managers" who would be helping out the team.
Each week, they included Jared as part of what was happening.
Speaking to him, asking him questions, treating him as "just one of the guys".
Their words and actions spoke volumes.

The other Managers on the team.
These other high school students have provided such incredible natural supports for Jared.  They have kept him involved, when he might begin to drift away into his thoughts.
They have let him ride along on the golf cart, when they are going to run errands.  Not necessarily because they needed his help, but because they knew how much he loved to ride in the golf cart.
They have gently pushed him to grow, while all along supporting him when he needed it.
Jared considers them friends.

The Football Players.
I wasn't sure how the football players would react to having Jared at practice and games.

I didn't know what they would think and possibly say about:
a peer who sometimes acts a little strange,
who doesn't converse like others their age,
who talks to himself at times,
a peer who has autism.

The football players have been incredible.
They have included Jared as part of their team.

This looks like....
talking with Jared when they see him,
thanking him for filling the water bottles,
high-fiving and fist bumping,
speaking to him in the halls and cafeteria during the day at school...

And on Friday night
under the lights
allowing Jared to hang out in the field house with them 
in that 30 minutes before a game
without mom or dad, without any outside support person 
and do whatever a football team does before a game in the field house.

Allowing Jared to walk out with the team as they enter the football stadium,
giving Jared the opportunity each and every Friday night to run through the tunnel,
past the cheerleaders as they cheer (one of Jared's favorite parts of Friday night)
and onto the field with the team,

chatting it up with Jared during the game when they come and get water,
as Jared cheers them on "Go my Cosby football friends, you can do it!"

Life changing!

As I look back over the last few weeks, I am full of gratitude.
I am humbled by the kindness of others.
I am thankful for high school football in a way I have never been before.

Baby you can drive my car...

16th birthday's are milestone birthdays.
A big deal for a teen.
For most teens turning 16 means one thing - driving!!

For our family it is a reminder of one of the things that Jared will most likely never be able to do.
He did not make a trip to the DMV to get a license today.
As a matter of fact, that is probably something he will not ever do.

But autism or not, he wants to do the things that other 16 year olds want to do. 
We know he wants to drive.

Several years ago he watched the re-released movie Herbie the Lovebug. 
If you have seen that movie, you know that Herbie (the car) can drive all on his own - no human needed.
Since that time, Jared had told us that he wants to have a "Herbie car".

About a two years ago, we saw a VW bug in the Walmart parking lot, painted just like Herbie.   Jared's eyes lit up!  He lit up!
In that moment, he saw something from a movie as a reality!
Maybe he saw the reality of being able to drive!

And he began to save his money to buy a Herbie car. 
He has a box in his room in which he saves his "Herbie dollars".  Most of them are $1 bills and if you ask him he will tell you he needs $20,000 to buy his Herbie car. 

Jared showed us once again how much like other teens he is.
He also showed us how aware he is of his strengths and his needs. 

He wants to drive.  Most likely he wants that same type of independence that all teens begin looking for. 
And he came up with a solution to be able to do that.  He decided a car that can drive itself is what he needs.

So we wait on the Google Car, which in reality could offer those with disabilities an option for transportation and independence.  A "Herbie car" that can drive itself may actually be a reality in the near future.

Last night, on Jared's 16th birthday, we gave him the opportunity to try his hand at driving.  We filled up two cars and a motorcycle with friends and family and headed over to Windy Hill to drive Go Karts. 

We had no idea what Jared would do.
Would he decide he did not want to do this?
Would he have a meltdown?
Would he crash his Go Kart into the side or into someone?
No idea - we had never tried anything like this before.

So everyone strapped in and the light turned green. One row at a time the Go Karts took off.

And when it was Jared's turn ---
he pressed the gas and took off!

He didn't go as fast as everyone else - but he drove.  And each time he came around the track I heard "WOOO HOOO"!!

Thank you Jared for continuing to show us that are capable of way more than we often give you credit for. 
And thank you for the immense JOY you bring to every situation.
Last night from the pizza, to you celebrating each person who was with you, to how excited you got over every tiny little thing, to driving that car - you were happy! 
And anyone that saw you couldn't help but be happy too!

Happy 16th birthday baby boy!

Determined to be Courageous

What a whirlwind!!
Three days... two nights... several hundred miles...
and still processing all the information.

See, Jared and I just got back from our second year attending the I'm Determined Summit.  This year Troy joined us this year as well.
And once again --- it was life changing.

I'm Determined is a time for youth with disabilities to come together to learn self-advocacy / self determination skills.  While the youth are in their sessions, parents are in parent sessions learning all sorts of valuable information - from transitioning from school to adulthood, to taking care of yourself in order to support others, and much more.

The youth leaders at this conference are so impressive!
Each with a disability and each DETERMINED to reach goals that they have set for themselves.

Jared does not exactly look forward to going.
It pushes him - in ways that he doesn't like to be pushed.
He has an entire day on his own (meaning at the Youth Summit without mom).  It's an unfamiliar environment, unfamiliar people, and very social...
all of which equal a very tough time for Jared,
who, because of his autism, unfamiliar things and anything social can create a perfect storm.

On top of that - he is asked to communicate!
Communicate to others and share his view on what his strengths are, what his goals and dreams are, what he needs to be successful, and what a good day looks like for him.
Communication - another difficult area for Jared.  Jared communicates - just not always using words.
And it takes someone really knowing Jared, knowing him, to understand who he is and what he is trying to communicate.

Everything about the I'm Determined Summit is difficult for Jared.
And to be honest, it is difficult for me.

I like to protect Jared and keep him from any difficulty as much as possible. 
I also have been his voice, in so many circumstances and for so many years, that it is difficult for me to send him off and not be there for him.
In addition, there are a lot of teens at the Summit who despite their disabilities and their struggles, are very social and verbally communicate very well.
Some of these students have such incredible stories that they can share - clearly and all by themselves.
And I can count on Jared having a meltdown at least once while we are there.  (He actually had two good sized anxiety ridden meltdowns this year).
It would be easy to say, "This is not for us".

However...

The I'm Determined Summit is very powerful for my family, for Jared and for me.

It reminds me:
Jared is always capable of more than I give him credit for.
We grow when we are stretched.  We ALL grow when we are stretched.
Jared should have a HUGE say in the direction of his schooling and his life.  After all it is HIS life.
Everyone has struggles. Everyone uses supports in one way or another.

And most of all, spending time at the I'm Determined Summit, reminds me...
that I need to be willing to let go!  (For those who know me, and who know what a control freak I can be, you know how difficult this particular thing is for me).

But I was reminded this week again...
that I need to have the courage to let go
courage to let go and let Jared make more decisions
courage to let go and let Jared have more of a say in his future
courage to let go and let Jared have experiences that may be hard
courage to let go and let failures happen

I am reminded over and over again to have courage.

Jared lives a life of courage!
I have learned so many things from him.  He has been and continues to be my best teacher.  He shows me how to live life with courage.

The I'm Determined Summit puts teens with disabilities side by side with each other and learn from each other - how to be a self-advocate and find a dream within themselves

and

it puts parents of teens with disabilities side by side and builds our knowledge base, builds our support base, shows us that others experience the same sort of struggles that we do.

But for my family - the most powerful thing we bring home from the Summit - is a renewed sense of COURAGE - to continue pushing forward no matter how difficult this life gets!
I am still afraid but I have found courage once again.

What a GIFT!
Thank you for the experience I'm Determined!!

"Courage is not the absence of fear, but rather the judgement that something else is more important than fear."

- Ambrose Redmoon

(Yes we did get him to wear a shirt that wasn't white!  Not for long, but he did.  And oh that smile!  Love this kid!!!)

Another school year in the books

Another school year is almost complete.  Just a few more days and this one will be... as they say... in the books. 

Middle school and high school end each year with a grade level award ceremony.  In these students are chosen for grade-level awards in each subject as well as a few special awards.
Today I am going to the middle school as Amber is receiving an award for math and for band. 
And last week I went to the Junior class awards at the high school and Brett was given an award for citizenship... the assistant principal called the few students who received this award the "unsung heroes of the school". 
In these type of moments, I can't help to feel so proud of my children and what wonderful young people they are!!

Brett has one year of high school remaining - and then he will be off to conquer even bigger challenges!!
I am excited, nervous, worried, and thrilled for him all at the same time.
Deep down though - I know he will be FINE!  He is ready for this time in his life, so look out world, he's coming your way!

Brett having one year left, means that Jared is close behind... close to being finished with high school as well.... and that keeps me up at night!

Unlike Brett, Jared will not leave high school with a diploma.
With college prep in the minds of so many high school parents and students, the task of actually obtaining a high school diploma doesn't seem like much of an issue any more. 
It is more like a given.... a way to just move on to the next academic place... college.
It is also something, as parents, we assumed was a given for our children.
Of course they will get a high school diploma, of course they will go to college.

But Jared will not leave high school with a diploma.
He will receive a certificate of completion.

In Virginia, in order to receive a high school diploma you must take a pass a certain number of classes in each subject (4 English, 3 Sciences, etc.), and these classes must be academically on grade level.  You must also pass any end of course state level tests that are associated with these classes.

Jared is so bright.
However, his autism causes language/communication issues and social/anxiety issues.  These two things coupled together make grade level academic learning out of his reach.

He has come so far.
From a child who didn't talk until age 4 to a young man who can now share things about his life with you.... a young man who can call me mom sometimes "mother" and who can tell me "I love you" (a miracle that I will never, ever take for granted).

We made a decision to focus his school time on functional reading and functional math and social skills (those things that will be important for him as an adult to reach the goal of having a job that pays a livable wage and living as independently as possible). 

I am reminded of these things when I see Brett so close to finishing high school.  I am reminded that Jared will not do so many of the things that most people his age will have the chance to do...
drive
date
go off to college
etc.

But I am also reminded that I will never say never.

For Jared has done so much that we were told he would "never do".
And he does things his way.
And most importantly.... at the end of the day.... Jared is HAPPY with his life.
He is content.
And daily he teaches me to be content as well.

Upside Down

I have always described our family's life of living with autism as a roller coaster ride.  The kind of roller coast that has really high hills but that also have really low points.  The kind of roller coaster that turns upside down at times, sometimes at times you don't even expect.

We got turned upside down yesterday and didn't see it coming.

Jared has been having a great year in school.  He loves high school. 
And when he is having a good year, we also have a good year.
We were coasting along, enjoying the scenery, enjoying the ride
and
the roller coaster flipped us over.

Jared got sick while at school yesterday.
That is bad - but is not a huge deal.

The flip comes in the fact that he didn't tell anyone that he didn't feel well.
He didn't tell anyone he was sick.
He didn't tell anyone he needed to help.
He didn't tell anyone he needed to leave class and go to the restroom
(his anxiety levels are out of control when it comes to using a restroom that is not at home)
And since this issue was a hidden issue for the most part, he spent part of his day before his sickness was realized.

Letting someone around you know that you need help/assistance is a skill that Jared doesn't have.
And it is a skill that he needs to survive in this world.
One we concentrate on at home, school and the community.
But one that is so very tough for Jared.

When he got home and I tried to talk about it with him, he sobbed.
I couldn't understand and he couldn't completely verbally say what happened and why, but he did say the words
AFRAID
NERVOUS
SAD.

This type of day breaks my heart COMPLETELY.

It is a reminder of
how much autism impacts his life,
how much autism will continue to impact his life,
how much anxiety he deals with on a daily basis,
how much I want to protect him from having to deal with issues like this.

So last night was one of those rough nights for me.
And today, we get back on the roller coaster.
We ride this roller coaster everyday - not because I want to.
We sit down in my seat and get ready for today's ride.
Not sure what today will bring.
Hoping that today will be a smoother ride, so that we have some time to recover from the last one.

Making a choice

My attitude affects my actions.  My actions affect my attitude.


How we look at things affects how we act / react - even if we don't realize that.
The way act / react in situation affects my attitude with similar situations in the future.

This is so true when it comes to my son and his autism.

I am VERY aware of the things that Jared struggles with.

His social issues are evident.
His communication issues are evident.
His ritualistic routines are evident.

I can easily find myself in a place where that is my focus.
A place where I look at my son, and my thoughts are about all the struggles and difficulties his autism presents.

And when I land there, that affects my actions ---

I do too much for him
or said in another way -

I don't allow Jared to do things he could do for himself

I speak for him
or said in another way -

I don't allow Jared the opportunity to communicate

I choose for our family to not do certain things
or said in another way -

I don't give Jared the chance to expand his community and his coping skills

I choose not to risk it

or said in another way -

I assume he will fail.

I do these things to protect him...
or to prevent meltdowns...
or to make it easier...

However, I have to remind myself, that when I do this,
I am also communicating to him and others around him that
"he can't" or "isn't able".

So today I remind myself to ASSUME THE BEST.
- Assume that he can participate in and contribute to everyday life
- Assume that he can be successful
And let my actions show my thoughts.

But also ASSUME THE BEST in others.
- Assume that they will have good hearts and be welcoming
- Assume they will accept Jared for who he is
And let my actions show my thoughts.

I know... I know the adage about what happens when we assume things...  but I need to believe that maybe that will not apply here.
I have to try and believe that there is good in the world.
I have to try and believe that even when things don't work out like I wished they would, even when things fail, even when we get hurt.... that tomorrow is another day.

I also know it is very easy to land in the place of "just being realistic".
But I land there way too often.

For today, I am going to work on my own self.
Work on my attitude about my son and about my attitude about others and their interactions with my son.
For at least today, I am going to make the CHOICE to assume the best.

"The ultimate barrier facing children and adults is not disability, but others' attitudes, low expectation, and more - assuming the worst.  We have to power to eliminate that barrier; we can make the choice to assume the best." Kathie Snow