The Fear of the Unknown

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I’ve been scouring the internet like a crazy person for the past 3 months. I’ve downloaded all of the packets from autism websites.

I’ve obsessed over all of the milestones that we aren’t hitting. All of the red flags.

I’ve called specialists and early intervention and therapists. I’ve read and watched and listed to articles, videos, and podcasts about research and diets and advice for parents of newly diagnosed.

I’ve read all the blogs and sought out wisdom from mothers who have been on this journey for a while. All of it has consumed me.

My youngest son (of 3 boys) is just shy of a year old, and, while we don’t have a diagnosis yet, I know with everything that I am that he has autism.

And boy, this is heavy.

The emotions are heavy. The grief is heavy.

And the fear, usually late at night, is especially heavy.

Fear of the unknown and fear of a terribly difficult journey. Fear of what this means for me and my family. But mostly, I’m afraid of the stranger.

After bedtime, when all the kids are asleep, my mind has time to wander.

It wonders what our lives will look like in a year. Will we have a toddler who is able to communicate at all?

Will he scream and fight every time we put him in his car seat?

Will he understand danger? Will he interact with his brothers?

Will he respond to his name? Will he mimic anything?

Will he still need a bottle? Will he have meltdowns every time we are out in public?

Will he be able to feed himself? Will he understand affection or want to cuddle?

Then my mind goes bit further down the road.

5 years. Will this boy be verbal? Will he have any friends?

Will he be able to go to a public school? Will he still be in diapers?

Will he dress or feed himself? Will he try to escape from our home? Will he require constant supervision?

15 years. Will he have any self-care skills?

Will he know he’s different? Will he self-harm? Will he be aggressive? Will he know he’s stronger than me?

Further… 25 years. Will a grown man live with us? What does that even look like? Who is he?

I wonder if every aspect of my life, my husband’s life, my marriage, my other children’s lives, will be controlled by a severely autistic, nonverbal, uncontrollable, aggressive boy…teenager…man.

That person feels like a stranger. That stranger terrifies me.

But then, still late at night, kids still asleep, I pull up a video of my baby boy laughing hysterically at his brothers and I take a deep breath.

He is not a stranger. He is my son, my little boy.

He knows his mom and dad, and he knows his brothers.

He is mostly happy. He loves music and animals and being outside.

He loves to swing and stack cups. He is not a stranger.

He is my little boy, and he will be my little boy every day from now until he is 5, and then 15, and then 25, and forever.

Maybe he will be on the severe end of the spectrum and completely nonverbal. Maybe he will have to learn coping strategies for self-harm.

Maybe I’ll have to learn how to help him through aggressive behaviors. Maybe he will have very little self-care. Maybe not. But it doesn’t really matter, because we can only take this one day at a time.

Today he is my little boy, and that won’t change tomorrow or next month or next year.

We will figure this journey, and each other, and the world out together, one day at a time.

I know full well that I am just at the starting line of this marathon. I know this is not going to be easy, and that it will probably be the hardest thing I ever do.

I know there will be desperately hard days and that this journey won’t be linear.

I know I will cry a lot.  But I know we will be okay. I know this because he was made to be my son, and I was made to be his mom.

He is not and will never be a stranger.

Written by, Amy Carter

I live in Dallas, Texas. I have the world’s most patient husband and three amazing little boys. My oldest is 7, middle is 4, and youngest, whom I wrote this about, is 10 months.

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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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