Dear Autism, You Have Changed More Than Just My Child’s Life

Dear autism,

I have had this letter in my heart addressed to you for some time now. I’m ready to tell you how I really feel.

Almost three years ago to the day, you hit this family like a runaway train veering off track.

We were simply trying to understand how to be parents, trying to figure out how to balance life, money, work and a relationship as husband/wife. We were slowly getting the hang of what being a family was all about.

Then you came knocking at our door—uninvited and totally sure of yourself.

I was just reaching that point, after my bout of PTSD/PPA, in which I felt like a mom. Where I didn’t feel like a babysitter to my own son anymore.

You showed up and ripped my heart out of my chest.

You turned me in into the very thing I never thought I could be: bitter. Bitter with cold and jealousy added in. Bitterness is a tough pill to swallow. You made jealously take over my life.

I started to shut the world out, deleting people in my life who didn’t understand. You forced me to sit in front of a computer and research autism hours upon hours late at night, when I should have been sleeping.

You made me become a stranger in my own home. I picked fights inside my own head with myself.

It was me versus myself.

I became a recluse mom who didn’t know how to interact with people. Someone just going through the motions of day-to-day living, trying to keep my head above water. Trying to understand this new title of  Special Needs Parent.

All the comparisons and milestones of what Maddox “should be doing” consumed me. I forced myself to nod at the comments that shot our way and bottle up the anger that grew in me.

“He doesn’t look autistic.” It’s the way we dress him, it hides it.

“He’ll catch up.” Without therapy and early intervention he probably won’t.

“He’s not even two. Are you sure?” No. The time, energy and amount of blood sweat, and tears at getting his diagnosis means nothing. The professionals are wrong and just want to label everyone these day.

“I’m sorry.” (This is my personal favorite.) Sorry for what? For me finally getting the answer to all the questions I had as a parent? Sorry for the person who is my son?

Oh, autism, how you have developed my skin into this thick armor that nothing can penetrate . . . NOTHING. You have turned me into a person who now truly understands how the world works.

Because of you, I understand ignorance.
Because of you, I don’t let people get into my head.
Because of you, I have been able to turn my anger into advocacy.

Thank you.

I morphed into a fierce Mama Bear who isn’t afraid to let the world know what you are all about. I am someone who is able to go into an evaluation conference with guns blazing. I never thought I could possess any more fierceness, but you showed me what it means when people say a parent would do anything for her child.

You flipped a switch in me, which helped pushed us to the resources my son needed.

Because of you, I translated the words he was unable to speak.
Because of you, I became his communication to the outside world.
Because of you, I was able to finally understand my son.

Thank you.

You made me question God and my faith.
You made me question life and the meaning of existing, the very truth of what it means to be not only a parent, but a person.

There were times when I thought I couldn’t handle it.
There were (and still are) days when it was hard.

Instead of going to work, I wanted to keep driving to a destination unknown, somewhere where you couldn’t find me. On those days, I pushed through . . . probably because I knew my husband can’t deal with you on his own.

Who knows when my depression would have made its presence known.
Without you, I wouldn’t have received the resources that I needed to help me feel like a mom.

I wouldn’t be the person I am today, filled with gratitude, hope, compassion and acceptance.
I definitely wouldn’t possess the patience skills I rock.
I wouldn’t be able to juggle my life as well as (I think) I do.

Thank you.

I realize now you are a secret gift I never knew I needed in my life.

You have given me the ability to see the world in a different light; that ability to remove the rose-colored glasses and truly see how our society reacts to differences, inabilities and handicaps.

I’m not going to lie, it is tough at times. You have opened my heart up and flooded it with feelings I never knew I could feel.

You have made me a better person.

Thank you.

You forced me to join a club that is full of the kindest, gentlest, most helpful and tenacious people I am honored to know—the Special Needs Parents club

It’s one I never in a zillion years thought I would belong to.

You showed me there are parents out there who would help strangers in need and expect nothing in return. These people would go out of their way to help connect and provide resources to understand my son. These people “get” me and understand what I go through daily. Some of these are people I will never meet face to face, but they are people who have impacted my life on a deeper level.

I wouldn’t have met them without you in my life.

Thank you.

Lastly, I want to thank you for what you have achieved in my son.

He is this amazing kid who doesn’t care what others think.
He doesn’t (and probably won’t ever) understand social norms or what “normal” is.
His mind and memory are incredible. How he thinks and remembers is beyond me.
He sees the world in a different light, straight forward for what it is with no hidden agendas.

You are the fabric of his being, an explanation why he does what he does.

I hope he can bring your acceptance into this world. I know he has the power to, one person at a time.

Autism, I thank you from the bottom of my heart.

Sincerely,
Jen, a once frustrated mom who finally knows why she was chosen to raise a special needs child.

Originally published on the author’s blog