Mistakes I Made Raising My Autistic Son
The mistakes I made and witnessed raising my son with a diagnosis of autism.
This writing came from The Unbridled Joy of Special Needs Parenting.
If you want to read about the Light side, I suggest you read The Many Reasons I Love My Autistic Son.
If you want to read about the Dark side, I suggest you read The Heart of Evil, the Darkest of Dark.
My biggest mistake was believing my son’s condition was an awful thing.
It’s not. And it never was. It began as a mistake, and it took me 15 years to correct it.
Best Boy in the Whole World
If you read my bio, you see that I have an adult son with cognitive disabilities, a diagnosis of autism.
He’s undeniably special. In so many ways.
His disability means he lacks sophisticated ego development.
In some ways, his mind is a pure land without some of the strong negative emotions that burden many of us.
In other ways, his mind is unrelenting chaos and confusion, leaving him completely helpless.
He requires 24-hour care.
I still hold his hand when we cross a street.
When my wife and I recognized our Fate, his condition forced a lot of unwanted spiritual growth upon us both.
The Moment We Knew He Was Autistic
We had been noticing our son was unusual since he was a baby. Most notably, we were dismayed by the lack of eye contact.
He refused to look at us.
No matter what we did, he simply wouldn’t hold our gaze.
We were new parents, but we knew that wasn’t right. We carried on in hopes it was a phase he would grow out of.
One day, my wife came across a magazine article that listed the signs of autism. My son checked every box.
My wife immediately knew.
She showed the article to me, and I immediately knew.
We didn’t take it to be good news.
The Incipient Error
We didn’t know it at the time, but in that moment of acceptance of his condition, we made a huge mistake that took us about 15 years to correct.
We thought this was bad news.
It was not.
It certainly wasn’t what we wanted. No parent wants to discover their child has limitations, serious limitations on his ability to contribute to the world or even take care of himself.
We had no shortage of friends and family willing to confirm our worst fears that our life was over and we needed to eat a shit sandwich.
We found support groups that further reinforced that we had endured this awful tragedy and someday, if we were lucky, we would develop a taste for shit sandwiches and choke them down as a badge of honor.
That’s fucked up.
This mistaken interpretation of our circumstances was the incipient error.
If I had known then what I know now, 15 years of heartache for my family could have been avoided entirely.
Saving you that 15 years of suffering is why I wrote this.
I hope you learn this lesson sooner.
If you want to really explore the power of incipient ideas, I suggest you watch the movie Inception. It’s incredible, and it makes the point I’m pointing to here better than I ever could.
The Going Gets Tough
Like most parents who discover they have a problem, my wife and I set out to do something about it.
This wasn’t a bad choice.
You wouldn’t ignore your child’s illness and allow it to remain untreated.
It wasn’t our actions, it was the spirit and intention behind our actions that created problems.
Our intention was to “cure” our son. To change him.
We were rejecting who he was in favor of who we wanted him to be.
We still want him to grow and improve, and we make every effort and accommodation for him, but while striving for more, we are completely content and happy with him, just the way he is.
That was not our initial mindset. At least, I know it was not mine.
This mindset was a toxically poisonous cocktail for my heart.
I rejected my child and insisted that he be someone other than who he is.
Not openly and overtly to his face, but secretly, buried in a dark corner of my heart.
Fighting and Losing
One of the most toxic attitudes I encountered feigns Righteous goodness.
The idea that I would fight for my child no matter what and never rest until he is cured, fixed, made unbroken.
This was a commitment to rejection.
I was setting my intention on fighting a battle against accepting my son for who he was.
I didn’t persist in this notion long, fortunately.
This was a war that couldn’t be won, and the only wise course of action was not to enter into the conflict.
Drop the toxic idea that you will cure or fix your special needs child.
Sorry to state this so bluntly, but you will not succeed.
The futility of entering no-win scenarios is the key lesson from the Movie War Games. It’s a short clip. Watch and learn.
Anger, Anger, and More Anger
Whenever most people encounter something they don’t want, they get angry.
This anger may be directed at someone or something, or it may be an unfocused rage against God or Fate.
It’s victim thinking, and it distracts from the underlying sadness.
When the parent of a special needs child gets the diagnosis, all their dreams of the future collapse in a heap.
Anger is the most common initial reaction, but if any parent digs deeper what they find is an endless reservoir of sadness.
It’s a despair and pain so deep you can’t imagine surviving a plunge into that cold water.
Yet, every parent must go there, cry an ocean of tears, and cleanse the sadness from the heart.
There is no other way.
Tears wash the stains from your heart.
Green Day writes some of the finest and most moving songs I’ve encountered. Masterful. This song aptly captures the death of a parent’s dreams for their child and the despair that follows.
The Soul Death of a Thousand Slights
The experience of most special needs parents when they take their child out into the world is a death of a thousand slights.
When my son was at toddler time, he couldn’t figure out itsy-bitsy-spider. All the other children could. My wife would sit and weep, powerless to do anything about it.
Life is full of millions of those little disappointments.
When my son was 9, we purchased a gum-ball machine because he liked watching the gum-balls circle down the track to where the gum ball came out.
He kept clamoring for gumballs, so we thought we might have to get rid of it.
We didn’t need to. I simply covered it with a towel, and it disappeared.
He could walk right up to the large gum-ball dispenser only disguised by a thin white sheet, and it didn’t exist in his world.
That’s sad.
These experiences are repeated over, and over and over again.
Each one is a painful reminder of his limitations.
It sucked.
And the main reason it was so painful is because we failed to accept his condition.
Each incident was a reminder of how fucked up our child was.
That was doubly sad because it didn’t need to be that way.
The Lure of Snake Oil
Desperate parents searching for a cure are susceptible to all manner of ripoffs by con artists selling Snake Oil.
This is reinforced by stories such as Lorenzo’s Oil where a parent really did find a cure for an unusual medical condition through dogged research.
Every special needs parent thinks they will be the lucky one who discovers the cure.
It’s not going to happen.
This scene is gripping. The worst news a parent could possible obtain.
If you have money, there is no shortage of hucksters willing to take your money.
We know a family that purchased a hyperbaric oxygen chamber for their home, thinking it would be a cure.
I installed stereo speakers on each side of my son’s crib so that I could play brainwave entrainment music to influence his brain states.
We sat through a sales pitch from a doctor who was an expert on magnetic resonance therapy. It would have cost us more than a new car.
Many parents go down the diet and nutrition rabbit hole and determine gluten or wheat is their enemy. They embark on mineral chelation therapies.
It’s not that these snake oil treatments provide no benefit, but it’s certainly true that they don’t cure autism, and they never will.
The worst part of the sales pitch is when the huckster says, “What if this was the cure? Wouldn’t you want to try and make sure?”
Playing on the emotions of desperate parents is a ticket straight to Hell. The Passionate Rage I feel, beckons me to facilitate their journey.
Save your money, and don’t purchase snake oil.
Accepting The Awful Truth
Parent support groups and even entire charities devoted to doing something about autism share a common mindset.
Parents must learn to accept their awful fate.
This attitude is slowly changing, at least publicly, but privately, nothing has really changed.
For the most part, parents are convinced their child is broken, and they must learn to accept a defective misfit.
That is wrong. On many levels.
This will move you. Even misfits want to bring joy to others by simply being themselves. If only their parents could accept that. Sad.
Patient Acceptance
Buddhists call the process of dissipating anger from disappointment Patient Acceptance.
When I was young, if my parents became upset because I wasn’t learning something, their displeasure strongly motivated me to figure things out.
That approach is entirely counterproductive, particularly with special needs children.
I developed endless patience, and I learned what acceptance really is through accepting him.
Love is accepting someone exactly as they are, wholeheartedly, not wanting them to be any different.
That lesson took me 15 years to learn.
I wish I could apply it to my wife. We would have less conflict.
I hope you learn it quicker than I did.