“I will never forget…..that seems to be my gift.  The pain that I once ran from, as hard as I could, is now my gift.  I will never forget.”

Dear Dad,

You are not alone.  Go into the grocery store on the way home from work.  See those other Dads in there?  At least one of them knows exactly what you are going through.  He is buying gold-fish crackers and chicken nuggets too.  He knows.

Let’s cut to the chase…..this Autism Dad stuff is hard.  It is crazy hard.  Living with a child on the Autism Spectrum means that you have to dig deep into an intuitive, touchy feely part of the human psyche that is not tapped that often by Dads.  This nurturing stuff is generally for Mom.  The Sports, Science, Tough Guy stuff is for Dad.  So when your little man has a melt down, it wrecks you.  When your little man has a melt down in public, you want to die.  You literally want to lay down in the floor and give it up to the Holy Ghost.  OR….You are SO mad that you want to beat the crap out of them.  You hate yourself for thinking it, but you are ready to explode.  OR…..maybe you just feel out of control ….and-embarrassed.  You see other kids that are just fine, so WHY MINE?  He can look so normal when he just sits there.  He looks so normal when he is sleeping.  And now, people are staring.  He is screaming.

He. Just. Won’t. Stop.

First and Foremost – DO NOT GIVE A DARN WHAT ANYONE THINKS/SAYS/DOES.  PERIOD.  Your kid comes before ANY random stranger.  So he is screaming.  People are going to be alarmed.  They will look. They may stare.  They do not understand.  It is human nature to look and try to figure out what the heck is going on.  They are not against you.  They do not know you.  It is not about them.  You need to be ready to say the words “My son has Autism and this_________ is tough for him.”  Say it. SAY IT!  Not saying the words does not change it.  SAY IT!  Advocate for your child.  It is not his fault.  He is not plotting against you.  He is trying harder than you can imagine.

You know how bad you feel when you have the flu?  How every thing in your body aches?  Now add very loud music, a humid climate, and flashing lights.  This is your child’s day, every day.  They are overwhelmed by their senses with their ‘fight or flight’ button pressed ON.  They are trying but are freaked out, all at the same time.  Kids with Autism have to learn to cope with our World.  They are stronger than you could ever imagine.  The fact that they can EVER learn to deal with daily sensory overload is simply amazing.  But they need help learning to cope, YOUR help.

So what is spooking him now?  A trip to the dentist/barber/doctor/mall?  Been there, done that.  I’ve laid across his arms while his ABA Tutor held his legs – just to get his teeth cleaned.  I drove him to the mall every day for almost a year, just to take 3-5 steps in and watch him melt down in fear.  As soon as the sounds, smells, lights of the mall really reached him, he would go down to the ground in a crumple.  Crying and trembling, I would scoop him up and take him out.  You see, I knew he had to do it.  As an adult, he needs to be able to go into a mall.  Just like he needs to be able to go into a restaurant, grocery store, Church, hospital, barber.  Life skills here.  But after that year of Mall Armageddon, he finally made it to the center of the mall. Then to the Disney store.  Then to the carousel.  The mall became his favorite destination.  Go figure.  So how did we do it?  First of all, the Glory is to God.  He gave us the strength and intuition to be the parents we had to be.  It was hard and we wanted to quit many times.  But we will not fail Ethan.

So what did we do?  Before we went to the place we knew would upset Ethan, we did a combination of the following:

1. Social Story (google it)  We made up a story about him doing the event, with him as the main character of the story.

“One day a boy named Ethan went to the dentist.  The dentist was Dr Greg.  He was super nice and even had fish in his office!  Yep, just like Finding Nemo!  So Dr Greg counted Ethan’s teeth and brushed them.  Dr Greg even took pictures of his teeth.  Ethan thought all of this dentist stuff felt funny in his mouth.  It did not hurt, but it did feel weird.  After he was done, Dr Greg gave Ethan a prize.  Dad had a Super Special prize for Ethan in the car.  Everyone feels so happy when Ethan is a big boy at the dentist.  Dad was proud that Ethan did no fussing or whining.  Ethan was proud too. What a Great Day!”

2. Schedule in writing.

If your child can read, write it down.

First, we will go to the dentist.

Next, you will get a prize for no fussing and whining.  (give the prize for him even trying.  If you get him in the door, he wins the prize for trying)

Last, we will go to the park because you were such a Big boy!

He needs to know what will happen.  Let him hold the list.  Let him feel some control over his day.

3. HEAVY praise for every attempt. 

Remind him of his prize.  Have the prize in the trunk of the car.  Once you pull up at the dentist, get him out and let him peek in the trunk to see his prize.  Tell him again, for TRYING and for no fussing and whining that he will get his prize.

4.  As soon as you get inside, take him to the bathroom. 

This will give him a minute to gather his senses.  He is now in the building.  He can begin to get acclimated to the temperature, lighting, smells, etc.  Keep saying how proud you are of him. Encourage him to use the bathroom.  Wash his hands.  Then get him to jump or do jumping jacks before leaving the bathroom.  This helps get rid of nervous energy.  Keep talking about what you will do AFTER you leave.

5.  Never let him see you sweat. 

He is a nervous wreck.  If you are nervous or mad, DO NOT LET IT SHOW!  He will feed off of this and it will make it 10x worse.  Keep it together!  Explain to the person that he has Autism and what it means for him.  (he hates loud noises, etc)  If this person is not able to be sensitive to this, ask for someone else.  I have switched barbers MID CUT for being a jerk.  Do not put up with crap from someone about your kid.  Not for a minute…

6. Remember YOU are their rock. 

In this World of chaos, they look to you.  They need you.  They need you to believe in them. To never give up. To stand up for them.  To see the wonder and amazement in them.

Ethan can go almost anywhere now.  He is getting better and better at internalizing his fears.  He advocates for himself.  He even kicked a kid for hurting him, after repeatedly telling the kid to stop.  He will talk back and defend himself.  He will also help others.  He checks on his friends.  He monitors the behavior of his classmates.  He flirts with the girls.  He flirts with his teacher.  He has awakened into the new Ethan.  He is Rocking Life!  This would NEVER have happened without the dedication many, but especially of his Dad.  A boy needs his Dad.  He needs Dad to believe in him and to Never give up.  Dad – YOU will make or break your boy.  Your boy with Autism CANNOT do this without you.  You have GOT to dig deep and be there.  Sit with him.  Hold his hand.  Look at him.  See the light that is in there.  He is waiting for you to see that he IS in there.  Under all of the behaviors and frustrations, your boy is there.  He wants to come out and meet you.  He is drowning, trying to breathe through a straw. Bring him up to the surface.  Hold him up.  Fight off the current and show him how to make it. He can learn.  You know he can.  Give him time, set the example and believe.  Get into a support group and share strategies.  You do not have to do this alone. www.myautismteam.com is a GREAT place to start.  Meet other Dads near you.  Help each other.

Most importantly, believe.  Ethan was given his ‘Never Day’ and it crushed us.  But we got mad.  We were determined that the baby we prayed for and begged God for would not have this outcome.  We prayed for God to keep His hand on Ethan, and He has.  Read everything you can on Autism.  Watch YouTube videos.  Ask for help.  Call your insurance to see if it covers ABA therapy (Behavioral Therapy).  Help yourself.  Help him.  Believe in your baby.  Your attitude will make all of the difference.

Now go kiss that Baby and tell him that you will NEVER give up.  One day he will kiss you back, look you in the eyes and you will realize that it was all worth it.

So what was the ‘gift?’  Every time Ethan does something that he used to be terrified of, I remember his fear like it was yesterday.  I analyse everything he does.  Freddie and I look at each other with each occurence and say “Do you remember when he would never have done this?”  We hold hands and watch Ethan and Ansley in amazement. “He’s really gonna make it,” we agree.  Kisses to Heaven for God’s Blessing and Strength on this journey.  We will never give up.  Don’t you dare!  You are closer to success than you may realize.  Keep looking up!