The Journey with Autism

Time flies by, as the cliché says, and your child transforms from a toddler to a little boy.

Being a mom of a child diagnosed with autism is a journey unlike any other because you never know if you’re going to be embarrassed, have your mind blown because your child thinks so much outside the box, or deal with a fit because he’s not ready to leave a place.

I remember calling my best friend when my son, who I call Hayes in my writing, was two. A doctor told me that he might have autism.  Socially my son was not where he needed to be, the doctor had said.

My husband and my journey with autism went from dealing with the quick rise and fall of any circle of friends Hayes might have due to some of his social behaviors to balancing our parenting with my school and our work. It felt like I went into a battle this time last year when it looked like I might not graduate on time or get kicked out of my program because I was required by my college to attend a mandatory meeting about requirements of teacher candidates on the same day as meeting with our son’s four teachers (including occupational therapists) to determine whether he would stay in the traditional classroom or go to a special setting classroom.

I fell on the sword and sent a heated email to one of the professors in charge who had demanded that I be there. It led to a Come to Jesus meeting, four teachers and an administrator having to move their schedules around, and putting the most important priorities first. The disconnect between this particular professor and I dealt specifically with the inability fully understand the priority.

I will never forget her saying, “We only give a degree to the best people. That is something we take pride in.”

My grades are straight A’s. I’ve given everything to this program, including the time needed for my son, I thought. What more do you want?

The answer was everything.

My priority always was my son from the time I entered grad school until the time I graduated, and slammed—not shut—the door on that part of my life.

Many parents battle professional vs. time for family.  And, there is a different type of challenge being a professional parent of a child with autism.   I constantly feel guilty being away from my son from the time I leave for work 40 minutes away until the time I get off work.

It never ends.

You never know what will happen.

I took my children to a children’s indoor play museum this past summer.  Hayes experienced one of his best days when a mom insisted he had hit her daughter. By no means am I saying my son is perfect. Far from it, but I know when he is truly guilty, and hold him accountable. In this moment, I said, “I will take care of it.”

Hayes would say to the girl, “Liar,” as she passed him in play not understanding the social skill of how to let go.

The woman approached me a second time demanding an apology from him or me.  Holding in the need to punch someone, I took a deep breath and said, “He’s not going to apologize if he thinks he didn’t do anything.”

I paused. “If you think he did something, then I’m sorry.”

I was ready to leave it at that, and she said, “My friend has a child with autism, and I always hate the way she uses autism as an excuse.”

It was time then to end the conversation before I was arrested for mom-on-mom crime.

Anger.  Since my daughter was born, I’ve dealt with it a lot, but I am learning to manage it. It is always there, but I try not to let it control me.  I have to accept that I cannot predict, as a mom, what will or won’t happen with my son, whether he causes events or not.

A six-year-old this year, he kicked and cried not wanting to go home with us when my cousin was home for a little while.  It’s embarrassing enough when strangers stare. I’m actually more comfortable with the stares of strangers by now than my own family members because I feel like I’m constantly being judged, and I know that there are certain moods of Hayes over which I have no control.

I turned bright red just yesterday when he said to a strange man, “Hey, big guy.” My husband said, “I’m sure he didn’t mean anything by it.” He told my husband’s father yesterday to “move it,” and my dad, “What are you looking at?”

We took away TV.

We took away dinosaurs.

Now he is at peace with his sister playing with trains.

Peace. I’ve never been one to openly discuss faith that much.  I think maybe God chooses special people to become parents of children with autism.  I have accepted through my son’s life that God does exist, and that there are a lot of bad things going on in the world, but there is something so unique in mine and my husband’s hands.

I write some prayers. Sometimes I just think or meditate when I am working out by myself. I remember the great moments like when Hayes held my hands up with my husband’s and said, “Look our arms make a W.”

I remember a conversation with another parent of a child with autism knowing I’m not alone.

And, I know my heart isn’t red …

but painted blue.

More Reading:

“The Truth about Being an Autism Mom”