Tuesday, November 11, 2014

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.

Friday, August 29, 2014

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!

Friday, June 20, 2014

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".


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


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!!!)

Tuesday, June 10, 2014

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...
go off to college

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.

Tuesday, April 29, 2014

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
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

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.

Friday, April 11, 2014

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

Wednesday, March 26, 2014

Unexpected Rewards

Today in our family, we celebrate the birth of our oldest - Brett.

Brett turns 17 today!  Hard to believe. 

I used to laugh when I heard OLD people saying things like "time sure does fly". 

But as I gracefully age (big smile), I find myself saying the very same thing. 

It really does seem like just yesterday when Brett was a little guy, and now I turn around and he is 17 and not so little.  His conversations have turned into conversations about college, jobs, majors.... and I can't believe we are 'there' already.

Brett is such a blessing to our family.  He can light up a room with his smile!  He has such a quiet, gentle and caring spirit about him.  And he has this stubborn streak (must have gotten it from his dad) that is soooooo strong.  We call that DETERMINED around here.

As Brett enters his last year of childhood, and prepares to enter adulthood, I can absolutely say that the world is a better place because of him being in it!! 

And one of the things that has shaped Brett into the young man he is today, is having a brother with autism.

Being a sibling of a person with autism is not easy. 

Research will say it comes with:
  • embarrassment (with peers, in the community)
  • guilt
  • isolation, loneliness, loss
  • resentment
And that is all true....

But having a sibling with autism also creates UNUSUAL OPPORTUNITIES and even at time UNEXPECTED REWARDS.

It shapes siblings into people who have a very different view of life and of people.

For Brett, I can tell that having Jared for his brother has added these things to his life:
  • maturity
  • a caring perspective of others, in other words TOLERANCE
  • insight that the world does not center around our own personal wants and desires
  • a greater sense of appreciation for family and health and talents

One of my favorite things these days, is to see my two high school guys, get into the car and head off to high school in the mornings - on their own.
And Jared, who typically prefers mom to anyone else, will say "I wanna ride with Brett" when it's my days to drive them to school. 

That's how I know.....
Jared couldn't have a better BIG BROTHER!!!

Happy Birthday Brett!

Sunday, March 16, 2014

A Good Gardener

This week Jared began Community Based Instruction.  That basically means he is spending some of his "school week" out of the school building and in the community, all the while learning!

More technically:

Community Based Instruction is incorporated with the belief that every student, regardless of the severity of his/her disabilities, is capable of living, working and recreating in the community. 

Community Based Instruction is not a field trip.

Community Based Instruction is not simply exposure to environments.

For Jared, he spent some time on Friday landscaping!  He helped plant flowers and lay down mulch for a local business.  While doing all of this, he worked along side of others and had to continually practice his social and communication skills.

Jared's favorite part of the day... his teacher brought in some Little Caesar's pizza!

Mom's favorite part of the day.... loved seeing the SMILE on Jared's face in the photos from the day and when he got home from school.

Jared's impression of the day... "I am a good gardener!"

Mom's impression of the day... love that education is not always thought of as a student sitting at a desk with pen and paper!

We will call this one - A GOOD DAY!

Friday, February 28, 2014

Shhh.... it's a secret

Jared started high school this year.

And like any of the other times that we have had a major transition, both he and I were anxious. 
Well not just anxious.... we were FULL of life-changing, can't catch my breath, when will this be over ANXIETY!

We have had these huge transition moments before -
going from home to special ed preschool
moving from preschool to elementary school
moving from elementary school to middle school
and then middle school to high school.

Each time both Jared and I .... well let's just say.... had some issues.

I get nervous for my other two children when they have big life changes like these.  But it is easier for them and for me to deal with.
They can verbally express what is happening.
They can let me and others know if something is not right, or if they need more support or help.
They have friends that help them through these transitions as well.

But with Jared there is more than just the average nerves.

I have all types of things that I think about:
...what if he needs help
...what if he is picked on
...what if he doesn't know how to get to a class
...who will watch over him in this new situation
...who will he be able to turn to if he needs assistance
all of which is compounded by the fact that he has such difficulty with language and communication and social skill.
(Just typing this now makes me have the heavy pain in my chest.)

But here we are.
Second semester of high school... and we are doing okay.
Actually high school has been one of the easiest transitions to date.

There are several reasons that I have come up with:
1) Both Jared and I are getting more experienced with transitions.
2) We have gotten better and better of working to ease transitions by giving him short experiences with the new location prior to the actual transition.
3) High school offers more flexibility than I ever thought.
4) Some really cool things have happened for Jared at high school that have helped make this transition much easier. 
Here's just one:

Yesterday I received an email from one of the teachers that Jared has in high school.  Jared goes to this class with regular education students.  And the teacher has been so flexible and open minded and kind and welcoming. 
Here is what she emailed:
"I just want to say what a delight it has been to have Jared in my art class. Talking with his class today we came up with an idea that I wanted to run by you. We were thinking that the art class before his May 24th run for Autism that we would throw him a surprise “good luck at your race” party. Students would bring in food and drinks, we’d have balloons etc. I know this is months away, but I wanted to hear your thoughts about it, and if it is something Jared would enjoy."

I would love to live in this moment forever!

Of course I said YES to her email!  I share it today to show some of the goodness that is in this world. If you see me in the next few days and see a huge smile on my face, you know part of the reason why.
But don't forget, that for now "it's a secret"!

Friday, February 21, 2014


LOVE books!

I actually have a book issue.... I can't get rid of any books, I can't stop buying books.... books are my 'thing'...

One of my most treasured books is a book called Souls: Beneath and Beyond Autism.
I actually have a signed copy!!!

This book combines photography and writing in the most incredible way... a portrays autism "from the inside out".

The writing describes a journey of a parent which very closely mirrors my own journey (another reason I treasure this book).

And the images are POWERFUL and filled with BEAUTY!

There is a dvd that captures some quotes from the book, uses the pictures from the book, and pairs them both with an incredible song... and the dvd has been posted to youtube.

The dictionary defines soul as "the essence or embodiment of a specified quality", "a person's total self".

If you want to catch a glimpse of the SOUL of autism... I encourage you to watch....

Thursday, February 13, 2014

21 years later....

So today is my Anniversary!
Troy and I have been married 21 years...

We met in high school..
last name Carter and last name Burns always in the same homeroom, as homerooms were assigned alphabetically....

But were we really got to know each other....was.... chemistry class!
I know, how classic is that, right?

Once again, due to ABC's of last names, we were assigned to be chemistry lab partners.  And we spent an entire year in chemistry, side by side, doing whatever we did in chemistry class (because Lord knows, I don't remember - it's been too long.)

And then the next year, we decided to take a chance, and go out on a date.  We were supposed to go to the Friday night football game, but it poured rain!  We decided to go and see a movie instead.  So we went to Chesterfield Town Center, which had a two movie theater... and saw the most romantic movie ever....NOT....

And in between then and today.... a wonderful journey.

And as cliche as it is to say... Time does fly.

Little did we know, 21 years ago, what life would bring.
So much has happened in those 21 years.

Jobs, new jobs, having to grow up and figure out how to budget.
Buying cars...buying our home...

And then the kids...

Brett... what a great day when he was born!  And then the terrifying second day, when they woke us up in the middle of the night to tell us he was having trouble...and now, he is almost 17.  He is talking about college and getting ready for SATs.  He is almost the age we were when we first started dating!

Jared...such a sweet blessing.  The craziness of learning that your child has autism.  The death of dreams and the birth of new dreams.  Learning to be the parents of a special needs child.  Jared teaching us a new depth of LOVE.

Amber... the princess was born!  Her love for life and for others continues to show us a new way to live!  And just yesterday she became a teenager.  And soon, mom and dad will have to learn how to let our baby become a woman.... but not yet....

And there have been hurts .... big hurts...
we lost my dad, your dad, your sweet Nanny and Pop...
and we held tight to each other.

And of the memories we have made in these past 21 years...
great trips, fun family vacations...
lots of smiles and lots of laughs.

I love that I have been able to share this crazy thing called LIFE with such an incredible man!
Looking forward to the next 21 years!

Monday, February 10, 2014

And today he wore a black shirt

So today, Jared wore a black shirt to school!

In most families, this was not be a big deal.  So what if a 15 year old picks out a shirt to wear to school that day and it happens to be black?!?

In our house, it is a series of tiny miracles!

You see....

Miracle #1 - Jared picks out his own clothes to wear to school.  I don't have to do this for him.  I don't take this for granted.  For a young man affected by autism, that spent most of the first 4 years of his life - running in big circles - being able to pick out his own clothes and put them on himself is a huge deal!

Miracle #2 - The shirt he choose was black.  For the past three to four years, Jared has only worn shirts with white backgrounds out the house.  Why???  Who knows?!?  But that is the way it has been.  And if we try to get him to wear a different shirt - well, that equals a huge meltdown that can last for hours.
So somewhere along the way, we gave up that fight.  And the white shirt wins.
But today, he came out of his room with a black shirt on!

Miracle #3 - Where did the black shirt come from?  Since Jared has only worn shirts with white backgrounds for the past several years, we don't really buy any other color shirts anymore.  He has one green shirt, that his cousin Cory and his wife Kristen gave Jared for Christmas.  He wears that one to bed - but not out of the house.  He has his Jogging for Jared shirt which is blue tie-dyed, which he wears each year at the annual 5K Run/Walk for autism.
Other than that - white shirts!
But.... on Saturday, Jared went to a VCU women's basketball game - without mom and dad!  He rode down to VCU with Brett and met his new friend/attendant Ryan.  Brett left Jared with Ryan since he had to go and meet up with the band for the game.
So Jared and Ryan went to lunch - Subway - where Jared got his famous "Bacon Sandwich" (which means lots of bacon on bread).
Then they went to the VCU women's basketball game!  During the game, Jared caught a black VCU tshirt that was thrown into the crowd.
The same black VCU tshirt that he is wearing to school today!
All of this, without mom and dad!
What was very difficult for me - letting him go without me, worrying about how he is doing, worrying about what he was doing ....
was making him more independent....

And today, he showed us how he felt about that.....

he wore a back shirt to school!

Wednesday, February 5, 2014

A Celebration

Jared struggles with verbal communication...

Jared struggles with social interaction...

put the two of those together, and....

Jared struggles with making friends.

He wants to have friends, who doesn't?

He just also wants to avoid as much social communication as possible.

That is way we are thankful for a young lady named Cait.

Cait is a senior at the same high school where Jared is a freshman.

And she is Jared's friend!

She has chosen to be his friend and understands that it is tough for him to reciprocate like a "typical" friend does.

She eats lunch with Jared, exchanges texts with him, and takes his picture with her and puts it on facebook!

She is his friend!

She will probably never know what an incredible gift she has given Jared and his family, because that is not her reason for being Jared's friend.

She enjoys being around him and talking with him.  She chooses to be his friend!

Tonight I celebrate!

Thursday, January 30, 2014


Jared received in home speech and educational services through infant/toddler services in our county beginning when he was around 18 months old. 

Once a week, a speech teacher came to our home and worked with him and me on language skills.  Once a week, an educator came to our home and worked with him and me on language and social skills.  They were very sweet people. 

They tried  hard.
Jared tried very hard.
I tried very hard.

But as Jared approached 2 1/2 years old, his language skills, attending skills, sensory issues, and fine motor skills didn't seem much different from where they were when we began the whole early childhood intervention.

And I found out that once you reach age 3, you age out of infant/toddler services and into something called Part B services.

So another group of people came out to our home .... and....
asked lots of questions....
tried to get Jared to do tasks...
most of the time tried to keep him in the same room.

Then we got invited to a central county office, where we sat around a table...
my husband and me
the county speech person
the county social worker
the county psychologist
the county occupational therapist
and a few others.

We sat there as each person read their report.

It was one of the most HORRIFIC experiences of my life!

Troy and I both were NUMB.
Numb: 1. Deprived of power to feel or move normally.  2. Emotionally unresponsive.

Hearing all the things that my son could not do. 
Hearing how his language skills were similar to a three month old.
Hearing how he was behind in almost every area (except gross motor - he was a great runner).

I had no idea this was what we were in for that day.  Totally Numb!

After each person read her report, we were asked if we had any questions.

What??  Questions??  I was full of questions. 
But I couldn't even speak.
I just shook my head to indicate no -
and they moved on to the next report
as we sat there...numb.

Then they offered us something called an IEP with goals and objectives that someone in a special education preschool classroom was going to work on with Jared.
These were all ready put together prior to us arriving.
They read through all of this paperwork with us.

Again... any questions??
Again I just shook my head no.

They said to sign here, here and here.
Then we left with a handful of papers and information that we would soon receive a phone call about the special education preschool class orientation.
They stayed in the room waitng for the next parents to arrive.
This was "old hat" for them.  One set of parents after another.  Week after week.  Year after year.

But for us....

(By the way, several years later, I am a little more versed in IEPs.  I now understand that we should have seen those testing results at least two days prior to that meeting, in order to better digest them and figure out our questions.  I now know that we are as much a part of the IEP team as everyone else, and we have input on goals and objectives.  These are things I make sure to share with others, as I know what that numbness feels like).

Saturday, January 25, 2014

Heart Broken

On October 4 of 2013, Avonte Oquendo, a 14 year old with autism somehow was able to walk out of his classroom and his school in Long Island, New York.  This week his remains were found on a beach in New York.

Overwhelming sad for anyone who know anyone with autism.

While we can't begin to fathom the deep saddness his family is experiencing, we all experience some of their saddness this week.

We know that their story could be our story.

We know that autism can be so heart wrenching.

We know a portion of their pain.

And I get angry...

How can a student with autism in a class of 10 with three adult teachers, just get away?

How can they let that happen?

How can a security guard not stop a child with autism from not leaving the school?

How can they let that happen?

How can they wait an hour and a half before contacting the mom?


And I get anxious.....

That anxiety that surfaces every so often...

When I send my Jared out into the world and hope.... pray.... trust.... that others are watching out for him.  That they are taking care of him in those hours when I am not there.

Their story could be our story.

No parent should ever have to go through this....
I have prayed for this family this week.
I don't exactly know what I am praying for for them, but they have been in my prayers.
I know their heart is broken, and I weep for them.
My heart is broken.

Thursday, January 23, 2014

A New Dream

With the diagnosis of autism... dreams died.

And we grieved.

A lot!

But slowly we began to dream new dreams....

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

Dreams like....

We see Jared as a smart, lovable and cheerful boy with great potential for success.
We are striving to give Jared every opportunity to be able to become a well-adjusted
member of society who is socially accepted by his peers.

Some of the short term dreams we have for Jared:
being invited over to a friends house to play,
being invited to birthday parties or sleepovers,
communicate 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.

Dream with us....

“A dream you dream alone is only a dream. A dream you dream together is reality.”
John Lennon

Tuesday, January 21, 2014

The Autism Roller Coaster

Most parents I talk to, who have a child with an autism spectrum disorder, will tell you that they experienced GRIEF when their child received that diagnosis.

And that was true for me also.

I went through the stages of grief that someone would go through if someone close to them died...


Anger.... (plenty of that)

Guilt... (what did I do to cause this?  what should I have done differently?)


Most people who talk about stages of grief say that the last stage is acceptance.

And yes, I did get there.  But not right away.

Today, I can tell you with no uncertainty, I love my son just as he is - autism and all!  If someone where to offer me a magic pill today that would suddenly "take away his autism", I would give it to Jared to take - but only for him and not for me. 
See I would give it to him because I know how hard he has to work at language and communication and living in a world that does not see things the way he does.
But the pill would not be given to him for me. 
Jared's autism makes him who he is.... and he is WONDERFUL!  And I love him and all his quirks and flaps and sweetness and naivety. 
I no longer find myself trying to fix him.

I do try to help him find coping strategies to live in a world that is not very structured - in a world that is so difficult for him - ABSOLUTELY!

Also, I have to say, that periodically, I go right back into the GRIEF - and hit all the stages again. 

Things come up like...

birthday parties,

and I experience grief again. 

When my daughter gets invited to a birthday party, I grieve over the fact that my son has not been invited to a birthday party since he was 5. 

When my oldest son got his driver's license, I grieved over the fact that Jared will not experience the thrill of turning 16 and getting a driver's license.

However, now the stages go by much quicker! 
Sometimes very quickly!

The autism roller coaster doesn't have as many valleys as it used to. 
The ride is smoother. 
Yes, there are still some valleys....
but we are much quicker at getting to a place of moving upward and onward.

We still go up and down...
but the roller coaster has changed
from one of those crazy roller coasters where people feel dizzy just looking at them...
to something a bit more manageable...
And it seems that the general direction is now more upwards.

Monday, January 20, 2014

I Don't Even Know Her Name

So I have to say, that those days and weeks after Jared was officially diagnosed with autism were some of the DARKEST days I have ever experienced. 

I was numb.


Days and nights ran together and it was all I could do to take care of myself and my children's basic needs.

Was this how the rest of my life was going to be?

Somewhere in one of those dark, dark days.... I somehow (and I can't even remember how) connected on the telephone to a MOM. 

A mom whose son has autism.

A mom who had been where I was at that point.

A mom who had made it out of that dark place.

A mom who was living life not just existing - and her son still had autism.

I don't even know her name.

But talking to her on the phone that day caused a tiny spark of HOPE.

And what I didn't know then but know now..... is that that phone call was the beginning of something new.

A new dream would be born -

it would just take some time.

Sunday, January 19, 2014

Ridding in the Little Red Wagon

So Jared began receiving in home speech and education services in our home, and I continued to think that this was all going to be something that would soon "be fixed".

But it wasn't.

Each week, we opened out door to the "professionals" and each week we spent 30 minutes to an hour trying to keep Jared in the same room as they were.

Life was exhausting!

I talked again to our pediatrician and this time he sent us out of town.
So one Tuesday... Troy, Jared and I loaded into the car and drove to Charlottesville, VA to the Kluge Center.  (Brett was able to stay with family that day).
We had waited months for our appointment with a developmental pediatrician at Kluge and I was strangely looking forward to seeing what you had to say.

Little did I know how much that day would change my life.

Kluge was a fabulous place.  Jared loved it!  They had an indoor playground in the waiting room - and I am not talking about a McDonald's or Chic Fil A type place.... I mean a full playground INSIDE!  When we went back to visit with the doctor, the nurse let Jared ride back in a red Little Tikes wagon.  He was all smiles!

So far so good!

We spent several hours answering questions, talking and watching the doctor work with Jared on all sorts of little tasks.  Then the nurse came and got Jared and took him for another ride in the little red wagon, so that the doctor could talk to us.

And then it happened .... she said those words that changed my life...

"Your son has autism" she explained.

Autism, wait... the other doctor said it was this PDD-NOS thing, so he doesn't have autism.

And slowly and gently and the doctor continued explaining this thing called AUTISM to us.

And life stood still....

It was like I was watching this happen on a movie or tv show....this couldn't be my life.  Someone is going to pop out with a hidden camera or something, right?

The words the doctor spoke, began echoing in my head....  I heard....





And I felt as if the walls were closing in.

"Do you have any questions," she ended with.

"Are you kidding?" I thought to myself.  "Do I have any questions, of course I have questions.  I have tons of questions.  I want to know WHY.  I want to know HOW this happened.  I want to know who you think you are lady!"
All of these things I screamed in my head - as I couldn't speak at all.

I just shook my head NO.  We walked out and picked up Jared from out of the little red wagon. 

I hated that little red wagon.  I should have never let him get in it.

I held him tightly.  He loved it when I did that.

Surely this doctor doesn't know what she is talking about.  He can't have autism.

We didn't speak to each other all the way home.

Deep down, we both knew the doctor was right.

As we rode in the car on the way back home from Charlottesville, I just kept hearing the words of the doctor echo over and over again in my head.

And life got very dark.

Saturday, January 18, 2014

Life went on (cont'd)

And so we began.

On the journey to find out what exactly was going on with our Jared.

In a span of several months we took him to pretty much every -ologist there is, except a gynecologist!  (We didn't think that -ologist would be too helpful in this situation!)  Then at age 18 months, a doctor sat us down and told us that Jared seemed to have PDD-NOS.
I came home and hit the Internet.

And I was relieved!

"He doesn't have autism," I told myself.  "It's this PDD-NOS thing and we will figure out what you do to cure that."  Boy did I have a lot to learn.

And life went on....

but it wasn't getting any easier.  It was much more difficult.

We had Jared screened by the county for Early Intervention Services.  A team of 6 professionals came to our home - all of them at the same time - all in our family room.

It was exhausting....

the questions.... does he do this, can he do that....

the answers.... no, no no, no.....

physically trying to keep my sweet boy in the room with all these people.....

and when they left....

he and I were once again covered in sweat... again.....

he took a nap...

I sat down and cried....

And life went on....

I started a blog many years ago and life happened.  So I decided 2014 was the time to start again!
I will use my blog to share info about all things Burns and all things autism. 
So I guess the best way to start is to start at the beginning.  Jared was born in 1998 and we were thrilled to have a second son!  Troy began planning right away for both of the boys' football careers.  He was elated to have two sons. 

And life went on.....

As months passed by, we noticed what a GREAT baby Jared was.  So easy going, really didn't demand much.  One thing we figured out early, was that if he was wrapped up tightly in his blanket and if he had one of those sweet baby hats on, he slept through the night! (Little did I know, that at age 15 he would still be wrapping himself up tightly in a blanket and putting his baby blanket around his head to help himself sleep at night!)

And life went on...

As time past I noticed that Jared really seemed disinterested in us.  He wasn't talking... no mama... no dada.... He wouldn't respond to his name, in fact I actually thought he was deaf.  But I knew he could hear the television, because he would crawl into the room when it turned on.  So I rationalized in my head, that he was deaf to certain frequencies - the one's that most people spoke in.

We took him to an ENT (ear nose and throat) specialist to have his hearing checked.  See in 1988 hearing checks were not done in the hospital when a child was born.  And what an experience that was!!!  We had to go into a small booth type room and sounds would be played and the specialist wanted to see if he would turn toward the sound.  In that booth was my first experience with an "autism sensory overload meltdown", although I didn't know it at the time.  We left that day, both of us soaking wet with sweat even though it was winter, and with no real answers, other than the fact that Jared could hear as well as I could.

And life went on....