Why I Have a Love/Hate Relationship With Autism


A letter to my son’s autism:

Before I had you, I worked in public schools with all kinds of special needs children. I thought, “Thank God that is not me,” or “I could never do that.” Then you came into my life. Snuck into it, really.

I would “cure” my son of you in a heartbeat. While it’s hard, frustrating and exhausting at times, there’s a different side to it as well. First off, let me tell you a bit about my son. He’s going to be 9, he’s completely nonverbal (but does use a cool device to talk), is partial potty trained and at times elopes (a fancy word for him escaping the house and scaring us spit-less since he has no safety awareness whatsoever).

Yet I’ve learned to be patient in the most extreme of times. I’ve learned not to take anything for granted — not a hug, not a smile, not a word uttered, not my children’s friendships and not the kindness of others. And that includes my other children. It makes me appreciate what they go through and even better understand their issues. Through classes and other means I’ve learned tools to deal with things in a different, more caring manner, even though I’m not a patient person by nature.

It’s taught me extreme differences make a better world, a different world and can make people better.

I’m now an advocate for the disabled and anyone who needs it. I took a class called “Partners in Policymaking,” which is put on by the Minnesota Governors Council for Developmental Disabilities. It taught me how to be a more effective advocate. The class is in around 33 states and for those with disabilities and those with children or family members with disabilities. I highly recommend it. There, I made all kinds of friends and learned to be even more patient and to listen. Our group was able to see and celebrate with a cognitively delayed woman as she advocated for herself. She was able to move from a home she hated into a shared apartment with supports.

I now have friends I never would have had. And these are real friends. Not the ones who will stab you in the back or take offense at the slightest comment. Ones who actually love me, and I’m not easy to love. I have a strong personality, and I make no apologies for it.

It’s taught my children there’s another world out there and even more careers than I knew existed full of caring people. It’s taught them that people with disabilities have value. It’s made them stronger because at times I can’t attend to their needs right away when I’m helping their brother. That’s a hard one for me. I can’t walk my daughter to her bus in the morning — she’s now in first grade. I’m lucky her bus stop is around the corner from our home and I can see it from the window. Autism has helped make her strong and independent.

unnamed

I have to say… I have a love/hate relationship with autism.

For all of March, The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

TOPICS
JOIN THE CONVERSATION

Related to Autism Spectrum Disorder

About That ‘Disabled or Not, We Have Each Other’ Meme

It was just a silly, innocent picture someone posted on social media. They truly meant no harm by it. I know they just wanted to make people laugh, and they did. In the photo, one person posed with a walker, one with a cane, and someone else sat in a wheelchair. The caption of the [...]

18 Sweet Examples of Grandparents and Grandkids Taking Care of Each Other

Grandparents give the best advice, are always available for a hug and know just what to say to make their grandkids feel better. And when your child has special needs, the additional love and support a grandparent provides can make a huge difference. Last week, we asked our readers on Facebook to share a moment they’ve [...]

This Star Is Revolutionizing Disability in Entertainment, and You Can Join Him

Twenty percent of Americans have a disability, yet people with disabilities make up just 1 percent of characters in film and television, according to GLAAD. Actor and producer Nic Novicki wants to change those figures. As a little person who has broken into entertainment, Novicki defies the odds. But he doesn’t want to be one of a few. So [...]

Dear ‘Genetic Disorder Unspecified’…

Dear “Genetic Disorder Unspecified,” I don’t know what to say. You see, this is how our relationship is — complicated. Bittersweet. I can’t quite say “thank you,” and “F-you” is a little too harsh now (although it’s admittedly been said many times in the past). It’s like a Dr. Jekyll and Mr. Hyde thing. Since [...]