Zeke’s Awesome-tism Journey

If someone time traveled back to 2012 (the year my son was diagnosed with Autism) and told me this is how it all turned out:

I would have thought it was a cruel joke.

In 2012, I had a non-verbal (anyone who has met him- I know, it’s hard to believe) child, who screamed instead of vocalizing, stayed awake for days at a time, melted down over the smallest sensory inconvenience, combative (yes, more so than he is now- ha!), & completely unmanageable.

He sent me to bed many nights crying; wondering, “how I will survive another day with Autism?”

A reality for so many special needs parents.

One we’re not supposed to talk about.

The first time the doctor mentioned autism, I, like many others in 2011 - 2012, had misconceptions. I couldn’t believe the doctor would say my incredibly intelligent child had THAT. Sure, he was a bit late on the talking, but…..

But a day or two later, I read the papers he sent home with me. It hit me like a ton of bricks: almost everything on this list was my son- down to incredibly obscure play behavior patterns my son exhibited. (Spoiler: not obscure in Neurodivergent Land)

Taking the time to read the paperwork and educating myself, likely was first step that led to my son’s success.

Within a month’s time, the schedule was: Physical Therapy, Cognitive Behavioral Therapy, Speech Therapy, Occupational Therapy, Developmental Therapy, and Family Training & Support Classes. These were just the in-home, off the bat, beginner therapies I started with.

I researched and found Autism Music Therapy (the breakthrough in his language development) and Autism Play-Based “groups” and therapies at every age.

I needed help; I was in over my head. WAY the hell over my head.

I took a huge tax hit on my retirement accounts from Blockbuster, Safeway, and Starbucks. I made this my full time job.

Everyone told me not to.

Luckily, I didn’t listen.

I had just graduated, receiving my Bachelor’s Degree 3 weeks prior, when the Dr told me to consider testing.

I was also accepted into Northwestern to further my education-

Again, something many people told me not to walk away from.

Again, luckily, I didn’t listen.

To say it was rough is an understatement. I was devastated.

I have never recovered financially.

Despite the fact that IL approved him in 10 days for SSI disability; when we moved to Wisconsin, he was deemed “not disabled enough” to receive benefits (to pay for necessary therapies and covered less than half the cost - after insurance.)

Insurance would then go on to deem the treatments unnecessary, as a result (I.e. The full cost became an out of pocket expense.)

How do you go back, after you’ve watched your child come this far?

The answer is: You can’t.

I made the decision to put my son’s future ahead of my own, because there will come a time when I will no longer be there (life is designed that way, most of the time.)

I want the best possible chance at him being capable of surviving in a world without me.

- A constant fear that liners in the mental space of special needs parents.

I delayed my son’s Kindergarten by a year, starting him at age 6. He was still very delayed emotionally, despite being ahead in other areas.

I lost a lot of sleep over this decision, as his preschool pressured me to move him forward.

I did not allow them to make a decision that I wasn’t comfortable with.

10 years later, he’s preparing for early graduation.

He will be in the Class of 2026, instead of the Class of 2029.

There were times during his early years of school, while watching him struggle with social aspects and the “sit down and cooperate”, that my most shameful and hidden fears was:

What if he doesn’t graduate?

But now we are here.

An impulse decision to look at fast track high school programs (and other options) after a long night of fighting with him about homework—-

And he has absolutely blown me away- maintaining straight A’s in high school.

For the first time in his life: he is talking about college.

I never dreamed of those conversations, because school has always been his Kryptonite.

If you ever find yourself in a Dr’s office or feeling defeated at the end of the day:

The beginning of the story -

- doesn’t determine the ending.

Only time and patience does.