A Mom’s Letter to Autism

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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 run-away 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 jealousness 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 become 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 that 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 Mom 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 ablazing. I never thought I could possess anymore fierceness, but you showed me what it means when people say “a parent would do anything for their 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 Parent Club

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

You showed me that 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.

Written by, Jen Fawcett

I am in my 3rd year of ‘officially’ being an Autism Mom to my son who was diagnosed at 22 months. When I’m not being a Mom/Wife, I like to craft, exercise, garden and create more projects around my house that may or may not ever be completed. You can follow my blog at Raising an Anomaly or on Facebook.

Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook and subscribe to our newsletter.

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Kate Swenson

Kate Swenson lives in Minnesota with her husband Jamie, and four children, Cooper, Sawyer, Harbor and Wynnie. Kate launched Finding Cooper's Voice from her couch while her now 11-year-old son Cooper was being diagnosed with autism. Back then it was a place to write. Today it is a living, thriving community of people who want to not only advocate for autism, but also make the world a better place for individuals with disabilities and their families. Her first book, Forever Boy, will be released, April 5, 2022.

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2 Comments

  1. LeAnn on November 7, 2018 at 12:58 am

    As a mom/stepmom and retired teacher of 29 years, I can honestly say you are my hero. Hang in there. There struggles are too real but the blessings are too!



  2. Irma on November 11, 2018 at 10:15 am

    Feeling so frustrated and emotional after reading your letter to Autism. My grandson is 3 and we have yet to get any answers as to weather or not he has Autism. Lots of physicians state that Owen has signs of Autism but no one has diagnosed Owen with it. Owen has yet to talk, he makes sounds and is being taught sign language. On occasion it has sounded like he has said mama, hi and cool but still unsure if we heard correctly or we were wishing that this words were spoken. Would truly love any help that you could offer to me to help my precious grandson Owen. Thank you so much for any help and any advice you may have.