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....