Sunday, January 30, 2011

Autism: The Fight for Normalcy

When MW was 3, his Dad and I took him to a child psychologist because he was having anger issues in the head start program he was in.

We didn't know he was Autistic then, but I had been reading anything and everything I could on his symptoms and had met a lady online who had an Autistic daughter and had gently pointed out that she thought MW might also be Autistic.

Within 10 minutes after meeting and working with MW, the child psychologist told us without a doubt that MW was Autistic.

My first reaction? Intense relief.

I had been arguing and fighting with Doctors since he was 18 months. I knew something was "off" with him. I had been repeatedly told that he was "precocious" "high strung" "manipulative"...etc.

Now that I had a diagnosis I could work towards getting MW specific help.

First, I had to learn what Autism meant. I already knew the symptoms of it through dealing with MW's behavior...but I had to learn what he was experiencing inside his head so that I could understand and help him.

For those whom have followed my blog, you know a bit of our journey.

One of the milestones in MW's and my life was a question I asked the psychologist.

MW could not be outside the house for longer than 20 minutes a day. I had to get everything done in that space of time. Every errand had to be condensed into one stop.

Back then they did not have the mega super stores they have now where you can basically get all your shopping done in one store.

Taking MW with me on my errands was a nightmare. He would cry and scream primal screams the second I stepped into a store. I would spend a good hour preparing him for my entry into a store to try and prevent the screams.

Along our journey I had learned that over head lights and sounds were extremely invasive on his nervous system. Close your eyes and think of walking into a supermarket. The bright lights, the clanging of cash registers, the raised voices of people. The intercom system announcing specials of the day. Now imagine the filter in your brain that closes off the nonsense noise is broken. You see, hear and smell everything.

MW's endurance of the overwhelming flood to his nervous system was about 20 minutes a day. That is all he could handle before he shut down and screamed in agony.

I asked the psychologist if MW would ever out grow the inability to be outside the home for longer than 20 minutes a day. She told me, "No. He would probably never get past that 20 minute mark."

I couldn't accept that. I wouldn't accept that for him. What kind of life would he have?

I started taking MW to the Mall. One stop shopping that had multiple shops inside with their different sounds, lights, environments.

I would entice him to go further and further into the mall with, "Let's go get some ice cream at the ice cream shop." Or "Let's go get a toy at the toy store" Or "Let's go look at the cool sword shop".

Little by little he stretched and his system learned how to adjust to the different sounds and smells.

When he was 5 and wanted a new pair of flashing tennis shoes I took him to Target directly from daycare and tried to find him some.

Target did not have them. I braced myself for his screams of frustration...but the screams did not happen. He was calm.

I gently asked if he wanted to try Payless which was right down the road. He surprised me with, "Yes Mom. Let's go there."

I packed us back in the car and drove to Payless. They didn't have the flashing shoes either. I slumped inside knowing MW would have been pushed past what he could handle and steeled myself for his raging frustration.

It did not come.

When I told him there were no flashing tennis shoes, he calmly accepted the news and patiently waited while a store clerk measured his foot and found him a cool pair of tennis shoes that didn't have lights in them.

I paid for our purchase and headed out. Halfway home it hit me. We had done it. We had shopped for an hour and a half and he hadn't screamed! We had gone to multiple stores and MW hadn't cried. He had compromised on an item that he had been fixated on...and he had not fallen apart.

We. Had. WON!

We had taken that 20 minute diagnosis and had crushed it. It was the proudest moment of my life.

Now we face another hurdle.

MW is 13.

Right now we are faced with another diagnosis.

A psychologist had told us that MW loses concentration every 15 seconds.

He is very good about bringing his focus back...but he loses it..every 15 seconds.

This means someday:

He will not be able to drive.

He won't be able to go to College.

He won't be able to hold a real job.

He won't be able to live on his own without help.

MW is starting to realize this.

The other night he lay on the couch and said, "Mom, I want to have a real life. I want to be able to drive. To have a good job. To go to College. I want a real life."

It tore my heart in pieces.

He left the room and I put my face in my hands and cried.

Lord V came in the room and saw me crying. I told him what MW had said and we both sat with heavy hearts, aching at the unfairness of it all.

It was so damn unfair. So unfair that this beautiful boy could not have the same life that we all take for granted.

Later that night I took MW to his once a month Autism game night, where he got to hang with other Autistic kids while parents talked to each other.

I talked about what MW had said. How he wanted to drive and have a normal life and how it broke my heart.

Each parent shook their head and shared in the heart break. They threw up their hands and said, "What are we going to do?" "What is going to happen to our kids?"

I left that night without an answer.

But, this morning I awoke with a new resolve.

I'm done crying. I'm finished.

I am not going to accept this lack of life for our precious MW.

I. Am. NOT.

I'm done sitting on the sidelines. I am not going to accept this new diagnosis.

We are going to fight. MW is going to beat this.

He will drive.

He will have a good job.

He will live successfully on his own.


He is too precious. Too wonderful. Too amazing to accept anything other than the best life he can possibly have.

I won't accept anything else.


Not So Simply Single said...

All kids should be so lucky to have a Mom like you.

BRAVO! Keep up the good work darling! He is worth it. Cute kid!