Autism Redefined

.

In the last 19 years there has a been an 

explosion of Autism Spectrum Disorder (ASD) diagnoses.

This has opened up concerns in the medical community,

as well as society as a whole

Today 1 in 100 children are diagnosed as ASD.

Most people know someone who has an Autism Spectrum Disorder

 whereas 20 years ago it wasn't as commonplace. 

Surely doctors MUST be over-diagnosing, right?

Not necessarily!

  The explosion of diagnoses is due to the fact that in 1993 

the definition of Autism was expanded to 

include not only non-verbal, low-functioning kids,

but also high-functioning children who may seem normal in some ways,

but their parents and teachers know better.

They have strange obsessions with things,

speak very formally and have a large vocabulary,

they are very intelligent, but often don't do well in school,

they are easily distracted, and yet can spend hours doing something

if they are really interested in it,

and sadly, they have very few friends. 

The expansion of the definition of ASD means

that millions of kids are able to get resources to help them 

succeed!

It means that parents are getting information and resources to help

cope with their children's unusual behavior patterns.

It has also given the general public an awareness that 

there is often a reason WHY some kids  seem

strange or "off-beat". 

 However, Autism Spectrum Disorder

is about to have a new definition.

 

Millions of children who are getting resources now

will not be able to receive them under the new definition.

Who came up with this plan?!

By changing the definition will these "off-beat" children

suddenly act "normal"? 

Will they begin to succeed in school without

resources or modifications?

Will ignoring their differences make them go away?!

Absolutely not.

The REASON why it is so vital to diagnose these children

early is because then they're able to get the

tools and resources

they need to

succeed in life,

not just in school.

We're not just talking about getting an A+

on their spelling tests because modifications were made.

We're talking about teaching these kids

social skills 

that are crucial for their survival in the work force.

We're talking about having resources and tools to

 teach them how to adapt 

to different environments

and to not be so

rigid, 

so that they can be loving

husbands and fathers,

and great employees.

 

 

We're talking about teaching them how to be

productive members of society

and how to use their strengths

to be successful in life, rather than 

allowing their deficiencies

to 

steal their potential!

So, this Momma of a child with ASD is very 

upset, and very concerned about these changes.

Very concerned indeed.

The day we told Cade...

We've suspected Cade has

Asperger's Syndrome

{click here to find out about Asperger's Syndrome}

since he was about four.

But we didn't KNOW (as in diagnosed) until

about a year ago.

So, as a parent of a child on the Autism Spectrum,

the question remains:

Do you tell them, or don't you?

Everyone has a different opinion.

We decided to tell him.

We found the greatest book to help us break the news to him.

All Cats Have Asperger's Syndrome
It's adorable,

cute,

has great pictures of funny cats,

and explains all of the characteristics

that make Cade...Cade.

He received it extremely well.

In fact, I'm pretty sure he was relieved.

He know's he's different.

He FEELS different...but just didn't know why!

We've told him for AGES that God made his brain different.

That's why he uses big words, and that's why he

loves video games, Star Wars and Pokemon (to a fault).
{FYI to all of you out there who cringed when
you read Pokemon-- it was created by a man
who also has Asperger's! Thus his fascination with it...}

But now he understands why he doesn't have many friends.

He understands why he feels awkward

when he's talking to other people.

Some people disagree about getting a lable placed on him.

But I think to ignore the obvious differences between him

and other children his age,

is to try to make him into something he's NOT...

and to ignore the specific way God designed him.

...and when God made this boy,
he made a one of a kind,
sweet, sensitive, bright young man!
He blows me away everyday with how intelligent he is!

I'm so proud of my Amazing Aspie!

And I'm so glad God made him

just the way he is.

So this is...see ya later...

On January 17 it will have been

eight months

since our family nightmare first began.
(click here to read about it)

I've used this blog as a wonderful outlet.
Sometimes doing projects was what I needed to keep my sanity.

And this blog has helped me to chronicle this journey we've been on.

I'm so thankful that I can look back and remember
each moment: each high and low.

But right now I need to step back.

There will be a day when I can do fun projects again,

{re}purposing furniture

and junk I find at garage sales.

But for now, I have a heavy heart.

We're on a roller coaster ride that has taken up

the better part of a year.

And I'm tired.

And I would very much like to get off, thank you very much.

And so this is goodbye

see ya later!

Thank you for the support.

Thank you for your prayers.

Dad's Story

In the Fall of 2010, Daddy had a heart valve replaced. Fast forward 7(ish) months and he had some dental work done on a Wednesday. By that Sunday, he was very ill.
 He couldn't walk or talk.

It was a very scary situation.

He was admitted to the hospital with a staph infection. Within a week, they realized that he was more sick than they had resources to deal with (and his cardiothoracic surgeon was at Baylor),so they  air lifted him  to Baylor Medical Center in Dallas, TX (4 hours away from their home).

It seemed like he was getting better, but we were wrong. About 3 weeks after everything began,   Dad crashed and they were pretty sure he wasn't going to pull through. His heart valve that had been replaced the previous Fall was infected with the staph infection (Endocarditis) and had caused several strokes.

They had given up all hope and said that it was too risky to perform surgery, but THANK THE LORD my sister, Heather, spoke up and said "Don't give up on my Daddy!"...so they didn't. Dr. Matter (pronounced "Motter") took him to surgery to repair the valve even though he had less than a 20% chance of survival.

He died on the operating table. Twice. But Dr. Matter fought for him and revived him. Despite the risky surgery, and dying on the table,  

He survived!!!! Dr. Matter said that normally when he has to replace a valve, he has to chisel it out. Dad's was so horribly infected that he just lifted it out with his fingers.  

We were elated and so relieved that he made it through the surgery and thought the hardest part was over. Unfortunately, that was only the beginning.  One of the providers came into the waiting room, sat down  and told us that we had some tough decisions to make. She said, "He's not going to make it through the day. In fact, I would be surprised if he made it through shift change." His body went in to multiple organ failure. His kidneys, liver, stomach, intestines, brain...they were all shutting down.  Our hearts all sank. Shift change was roughly 2 hours away. We all rallied around him, sang to him, cried, said our good-byes, cried some more. It was like a terrible nightmare.

It's funny how once a doctor says that your loved one has two hours to live...you just believe them. 

No questions asked. 

 An hour went by and he was still alive. Two hours / shift change came and he was still alive. Three, four, five hours went by and he was still alive, so We started to have hope!

We started fighting for him! We prayed God's Word over him. We laid hands on him and prayed for him. We fasted. We prayed some more. We had people all over the world praying for him, and we FELT those prayers! It's what sustained us!

Dad was in a coma for 1.5 months.

He was on MASSIVE amounts of blood pressure medication and antibiotics. The blood pressure medication cut off circulation to his legs and feet in order to save his major organs. This caused his feet to become black (and basically die). It was a very difficult decision, but Mom decided to have them amputate half of one foot and several toes on the other foot.

Then slowly he began to wake up. His liver was waking up, his stomach, intestines, and brain too...but not the kidneys. They told us that he would be on dialysis for the rest of his life. He had a trach, so he couldn't talk. Months went by and he was still in the ICU. Those were very difficult days for Mom and my sister, Heather...trying to read his lips and feeling so helpless.

We were reported to the Ethic's Committee by a few of the nurses and a doctor, because they thought his death was immanent and that it was unethical to keep him alive with the ventilator. They tried to force us to turn off the machines and let him die. But we believed that God had a purpose and that there was a reason WHY he had died twice on the operating table and we were told multiple times that he was "supposed" to die....and he didn't. 

Dad was in the ICU for 5 1/2 months! Then he was finally admitted to a normal room in the hospital. As they wheeled him out of the ICU, the Doctors and nurses lined the hallway and clapped. Such a testament of God's provision and faithfulness (especially since they were the very people who tried to force us to pull the plug on him).

He spent the next several months rotating between  Baylor Specialty Hospital, a regular room in the hospital and the ICU.

He had to go Back to ICU several times for various reasons. Each time that familiar fear gripped our hearts and we would start to think, "This is it...he's really not going to pull though. The Dr.'s were all right...." But time after time, he would have a short stay in the ICU, and it was another opportunity for God to be glorified!

In February 2012, 8 MONTHS after he was air lifted to Baylor Medical Center in Dallas,  dad was FINALLY able to be transferred to a hospital close to our home town-- 4 hours away.

11 days short of being in the hospital an entire year, Dad was able to go home!!!! Our next step will be to spend a few weeks in a rehab hospital, where he will learn to walk again! 

Thank you for taking the time to read this. If there's ONE thing you can take away from his story, I hope you can see that God is the God of miracles!!! Even if science has no answers, God does. Even when everyone else gives up, God is still there. Even when everything and everyone tells you to let go, God still has a plan. He will never leave you. He will never forsake you.

Whatever impossible situation is in your life, God has a way out! Give it to him and see what happens!