If You Don’t Know My Son, You Don’t Know What’s Best

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I write about my non-verbal son for one simple reason. I want the world to know who my kid is. From what I see every day, very few people truly do.

The focus is positivity. I want society to look beyond the negatives and deficits that are splashed across any checklist for new parents and know that, even when your child ends up with severe autism, there are beautiful aspects of who they are because of it.

Lucas has all those positives. Whether it’s his ability to step outside the turbulent day-to-day frustrations that so many of us face, to embrace the activities that make him happy, or his genuine expression of emotions, Lucas is one of a kind.

Everyone needs to know this because so few do. We talk about the heartache, the horrors, and the challenges that come with a diagnosis. We rarely talk about the appreciation that grows when knowing a person affected by autism.

Yet, you’d never know it by talking to people outside our home. I’ve spent my son’s entire lifetime getting to know him and understanding his needs. However, there are plenty of armchair experts trying to dictate advice, despite having never met him.

Like many parents, I dealt with friends early on who gave me, often insulting, advice. Things like insisting that I keep him in a mainstream school, even though I knew he wasn’t where he belonged, or telling me that the secret to language is “talking to him more.”

My son has flourished in his specialized school. As for talking to him, I do that constantly. Lucas hears my voice and opinions more than anyone else on Earth. He’s my confidant and, best of all, he can’t tell me to shut up. I don’t think he would, if he could. We’re cool like that.

It’s not just people who have flawed suggestions. Amazon has recommended many autism-friendly toys to me over the years. Hey. My kid has autism, and he’s friendly! He’s sure to love all these things, right?

Nope. Piles of fidget spinners, stretchy body suits, and weighted blankets all littered my home for years. It was an influx of clutter until the day I realized that I know his likes better than any algorithm. Turns out, the most autism-friendly thing you can do is actually know your child.

I’ve also dealt with the faith healers, who are routinely deleted from my social media contacts. They urge me to check out Dr. Feelgood and his magical menagerie of quick-fixes. They’re all different in their form of alternative treatment. They’re all just as arrogant in their approach.

I say this because I will write an entire post about loving my son and never wanting to change him. Then, underneath, there’s a sales pitch from a random stranger offering to do just that. Read the post, hacked Facebook account. I’m good with who he is.

I’m so good with it, in fact, that I wrote a post last week for HuffPo explaining why I didn’t want a cure for my son’s autism. The article never stated that I wanted to stop others from doing what’s right for their family. I simply love my son and stopped searching for fixes or answers a long time ago.

And, from that, I’ve gotten some truly wonderful feedback. Even those who might not share my outlook wrote some kind things.

However, I also heard from strangers that I am “dangerous”, “delusional”, and “a weak-minded democrat.”

…because I love my son as he is. 

Keep in mind, I don’t share my politics. In fact, if you want to know, my politics are simple. I believe in treating others with respect and hearing people out to learn why they think as they do. I never push my beliefs on others and insist they follow them. I simply tell you who I am and why I do it. What you do next is up to you.

The fact of the matter is that these abrasive emailers don’t know my son. Even if you have a child just like him, you don’t know him. I do. I know what’s right for him and what works for our family. Everything I’m doing is right. I know this.

Do I appreciate advice? Sure. Granted, most times I didn’t ask for it, but people like to help people. I understand. Those who come to me from a place of compassion will always have my ear.

If you’re one of those people, thank you. I’m not talking about you, though.

I’m talking about the people who think they have the world figured out and set out to battle anyone they think might feel different. It’s black and white. Mets vs Yankees. Can we please take a breath once in a while?

People are upset that I don’t want to change my son, even though since 2017, I have literally written thousands of pages explaining why. There’s name-calling and pushiness that you wouldn’t believe. I’d never do that to someone else.

Know who else would never do that? Lucas.

My non-verbal son, the one people think I need to “fix”, acts more loving towards his fellow man than those pushing for a cure. Cure him to become what? Just like you? No thanks. He’s cool.

If this offends you, then you’re part of the problem. Change the world in your own home. Set an example. Show everyone how you live and let them envy and emulate it. Don’t come banging on my door and insist that I see the world through your eyes. I don’t want to, and I won’t.

If you don’t know why, you don’t know my kid. You don’t know what’s best for him. I do. So if you are going to come to me with insistence and aggression because I think differently, you’re wasting your time. We’ll call you if we need anything. But, as of today, we’re good.

Actually, we’re perfect.

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