I Would Not Change My Son for the World.

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“I would not change my son for the world. I would change the world for my son.”

I came across this quote the other day and it reminded me: This is why I share my son’s story. There is so much about his autism experience that is out of my control. What I can do is spread awareness and hope that it leads to a little understanding, patience and compassion.

Many people are unaware of the reasons behind some “autistic behaviors”. Autism affects communication, social development and sensory processing, with the degree to which these areas are affected being unique to each individual.

Sensory processing difficulties are really hard to understand because the triggers can be invisible to neurotypical people. I am slowly learning more about the triggers and sensitivities in Wilson’s world.

He is very sensitive to bright lights and certain sounds. He has left the room screaming or cowered in my lap over noises that a random toy will make.

He is very particular about what clothing he will wear and what foods he will eat. He often studies toys or objects by turning his head completely sideways or upside down.

He seeks movement and pressure and likes to bump into people or be wrapped up tightly in hugs or blankets.

He is learning ways to cope with his anxiety and sensory reactions, like chewing on something or taking deep breaths. Sometimes singing a familiar song will help.

Many people with autism find comfort in routines and repetition, just like Wilson. He says things repetitively, plays with toys in the same manner or repeats little scenes over and over. He gets irritated if we take a different route to therapy or home. His memory is truly incredible.

When his sensory system is overloaded, he breaks down. His first reaction is to scream. His screams have reached an all-new high pitch. He usually becomes limp, hits, or tries to run away. Sometimes he’ll hit himself in the head, slam doors or push furniture down.

People stare and make snarky remarks. Luckily, this only bothers my husband and I.

Wilson doesn’t read other’s emotions well or understand the comments. Someday he will though.

So let’s talk to our kids about how all their friends are unique, and that it is a beautiful thing. How we all learn at a different pace, and speak in distinct ways, but can still have so much in common with one another.

All children could benefit from a friend to help them overcome challenges and build confidence and self-worth. Let’s teach them acceptance and inclusion.

Let’s change the world.

 

(originally posted: April 16, 2018)

The Fear of Wandering

Wilson farm.jpegLast night, I saw my sweet boy for the first time as a grown young man. My dream was so real. Until now, I really hadn’t been able to picture him outside of toddlerhood. I kind of blame that on autism. Maybe it’s the language barrier between us, or the discomfort of not knowing exactly what his future looks like. For some reason I just couldn’t picture him, or didn’t allow myself to try.

He was big, taller than me. Happy and gentle. And strong. He clung tightly to my arm as we walked through a busy hotel lobby, I could tell the noise and new space made him uneasy.

I was so proud of him. He had grown so much and made progress beyond my expectations. As a family, we were enjoying our time outside at the hotel pool when the all-too-familiar panic set in.

I lost him.

I frantically ran through the busy hotel, the pool, the restaurants, and lobby searching and asking strangers if they had seen him.

The panic really set in when I realized that no one seemed to meet me at my level of concern. It wasn’t a missing child, after all. I was looking for a grown man.

A teen annoyed with his mom, or a young man running an errand, a miscommunication, they probably thought. But my young man was still a boy, really, and he will not find his way back, and certain lights and sounds literally cause him pain, and he takes almost everything literally and he could walk right into traffic…but how do you explain all of that when you are hysterical?

This dream topped all the heart-pounding ones of the past: the missed college exams, waitressing in the weeds, falling. I’ve had a pit in my stomach all day about it. It was just a dream, but one that very easily could be our reality.

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Wandering (or eloping) is a concern that parents of children with autism deal with long after the toddler years.

That fear may never go away. And that’s ok.

We will continue riding the waves of autism with our sweet boy. The highs, the progress, remind us to remain hopeful. The regressions keep us resilient. They keep us fighting for better.

I am so thankful for the recent progress we’ve seen in our boy. Even though this dream ended with a large dose of our autism reality, it gave me the gift of a little glimpse of who he can become. And I am more excited than ever.

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Born Rad

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The R-word is done, guys. Bye! see ya! Broaden-your-vocabulary-never-to-be-used-again. Gone.

Some friends and I went to an amateur comedy show last night. It was really fun until the last comic starting making fun of people with special needs. And used the R-word repeatedly.

I was beyond disgusted that ANYONE would think his jokes were funny.

I came home to see my sweet little guy asleep in his bed and I just fell apart. I can’t understand how anyone could think this perfect little human’s very real struggles are funny.

I’m not going to start listing off all the things my son may never do because of his particular neurological design. That’s a rabbit hole I steer clear of on the regular. But I damn sure hope he is never in a room like I was last night, where people with different abilities were the punch lines.

October is National Bullying Prevention Month and this is a perfect reminder of the roles we play and the influence we have on others.

Everyone laughing at those crude jokes were just as much a part of the problem as the man spewing them.

Stand up for what you believe to be right vs wrong. Use your voice. Use your actions. THEY MATTER. I promise you will regret your inaction more than taking an opportunity to stand up for what is RIGHT.