Autism Moves Out

CJ was and is one of the greatest gifts of my life.

I loved being pregnant.  I loved feeling him kick.  I tried to micromanage my pregnancy, only to discover that you have NO control over much of anything when you’re pregnant (or after you’re pregnant, for that matter).  I was sick almost every day and didn’t care at all.  I gained 55 lbs and cared just a little.  It was a nearly perfect pregnancy.  He was born at exactly 40 weeks and he was big…9lbs3oz.  He had a 14” head.  But he was only 20” long, so he looked fat and happy.  He was so big that people would come into my room and look at me and say, “YOU are the one that had that big baby?”  His head was so big that the hospital hats did not fit him.  My sister was so upset about it that she ran out right out and bought him a hat.

He was one of the happiest babies I have ever met.  He was always smiling and laughing.  When I went out, people would stop me all the time to comment on how cute he was.  Men especially liked him.  The bigger and tougher the man, the more he liked him.  CJ loved them all, too.

He was born loving sports.  As a baby, he wouldn’t sit to watch a kids show, but would sit for hours watching any sport.  He watched sports that we didn’t.  He knew about them.  It was so funny.  We just knew he was going to be a superstar athlete.

He had plastic golf clubs that he used by the time he was 2.  He had every ball you can think of.  We bounced basketballs in the house.  After all, I figured, what was the point of wood floors if you weren’t going to use them?? When he kicked a ball into a glass decorative plate hung over a doorway, I adjusted my theory and decided it was time to move it outside.

He continued to make physical milestones right on time.  Average walking age is 1 year.  He walked on his first birthday.  Physical was fine.  But he wasn’t talking or interacting.  Looking back now and looking at videos, I can see it.  I would have known the first year, had I known anything…but I didn’t know anything.

Before you have a child, you have no idea that you can love like that.  When you have a child, you can’t remember it being any other way.  My love for him just grew and grew.  We were starting to realize that something wasn’t right, but he went to a daycare that was wonderful to him.  That gave us some time to begin to understand.  They were patient with us and worked with him about moving up and not being potty trained.

He was still so popular with everyone. It saved us over and over again.  Being cute, pleasant and funny will get you more than you ever imagined.

And then we had THE MEETING with the doctor…the one every parent dreads…the one that will forever form the boundary between your life “before” and “after.”  It didn’t change anything, but everything was different.

And that’s when you discover that when you love someone that much, you will do anything for them.

We put him in a public school Pre K program for kids with developmental issues. The constant diapers and pull ups were expensive and frustrating.  No one wanted to take him for after school programs.  But I had a job.  I had to work. I finally let him take the bus.  He was just past his 4^th birthday.  He didn’t talk well.  His frustration was growing.  Desperate four-year-old times called for desperate four-year-old measures.  He bit.  In case you didn’t know, biting will get you thrown out of a daycare faster than anything else.  I think we went through 4 daycares that first year.

Then there was school.  Instead of the occasional parent/teacher conference, meetings there went like this….psychologist, social worker, teacher, guidance counselor, speech therapist, occupational therapist, staffing specialist and sometimes a vice principal.  There you sit in an 8:1 ratio while they go around the room and one at a time tell you everything that your child can’t do.  Meeting after meeting, the “can’t” and the “never wills” piled up. Can’t tie his shoes.  Never read a book.  Can’t hold a pencil.  Never write a story.  Never date a girl.  Never go to prom.  Never drive a car.   After one meeting, I sat in my car and cried.  I was due back at work.  I called my manager and told her that I didn’t know when…or if I would be back.

But I got myself together.  You do what you have to do.

I loved him, but had no idea what to do.  Autism.  It is exhausting.  It is depressing.  It is harder than you ever imagined or anyone could ever explain to you.

He is still funny, popular and getting extras at school because people are in love with him.  He is in high school now.  He helps with the baseball team and the football team.  The kids love him.  They joke with him.  They treat him like one of the guys.  That is the fabulous part.  Not every typical kid gets to work with or be on the sports teams.  But CJ gets special treatment, not just because of the condition he has, but because of who he is.

The down side is that I can’t just drop him off to hang out somewhere.  He can’t just stay after school.  He can’t get a ride from someone else.  He can’t go to a friend’s house.  He can’t be sent off to not drive me crazy for a few hours.  He can’t stay alone.  He has to have someone with him at all times.  There are no breaks, no time outs, no vacations from autism.  Not for CJ.  Not for any of us.

The part that keeps you going is that he is first and foremost your child and you love him.  In CJ’s case, he is cute and hilarious.  Good thing, too.  Right around the time I want to wring his neck, he makes me laugh and I can’t stop.

There is a reason God makes them cute.