I would not change my son for the world.

advocate like a mother

“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.

Wired Wonderfully

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“He’s just wired differently.”

We heard this phrase often in those first months after Wilson’s autism diagnosis.  We were trying to wrap our heads around this world of autism in which our son was living.  It’s a fairly simple phrase, which was almost refreshing given the complexities of this disorder we wanted so badly to understand. We’ve since learned that for us, autism is in the moment. It’s unpredictable.  Some days it is two steps forward, and one step back. It’s phases you cannot wait to get out of, and moments you want to freeze in time.  It’s taking the long way. Routine and Repetition. Pure innocence. Unconditional love and loyalty. It’s falling down and getting back up.

Wilson is a typical toddler who loves being tickled and chased. He’s into anything that involves jumping, bouncing and spinning. The faster the better. He loves music, building, blowing out birthday candles (it doesn’t matter whose birthday it is), and dressing like his daddy.  He loves anything and everything to do with pirates, trains and keys.

What makes him so different? This is where the wonderful comes in…

He is absolutely enamored with his shadow and reflection. He prefers (aka will only eat) his peanut butter and jelly sandwiches open-faced and cut into bite-sized pieces. He has mastered running away with his pants around his ankles when you attempt to change his diaper.  Sometimes his mind and senses are so overloaded that he quite simply needs to be wrapped up tightly in a hug.

He says, “You’re welcome!” whenever someone on the television says “thank you.”

Scripting (reciting lines from movies, books, songs etc.) was Wilson’s first major vehicle for speaking. He could recite scenes from his favorite cartoon and sing songs before he could say “mama”.

Eventually, Wilson learned to use some of those phrases to communicate in his day-to-day life. When he wants you to read him a story, he’ll hand you a book and say “Once upon a time…” Every time he finishes in the bathroom he’ll say “Fantastic! All done!” with his arms in the air.

Much of his speech started as echolalia (repeating what he hears, verbatim.) When I would say, “bye, Wilson” he would reply, “bye, Wilson.” Echolalia is a common way for toddlers to learn and practice language, however, children with autism can have echolalia much further into childhood.  There were times it felt as though he would just repeat me forever.

While tucking Wilson into bed one night, I said “I love you” and he replied, “I love you, mommy.” Mommy. He added that all on his own. He wasn’t just repeating me anymore, he was beginning to express his own thoughts and responses.  That one single word fed my soul so much hope that night.  It seems so simple, but for him, it was a remarkable step.  I remember every single moment of that exchange, and it was nothing short of wonderful.

Sibling LOVE

 

wilson and charlie.school

I’ve found it very difficult to protect my heart when it’s beating outside of my body. These days it’s running around in the form of a little blonde-haired, blue-eyed toddler, in its most vulnerable form.  I’ve wanted to protect my son from the Big Bad World since day one. Most of the time his adventurous spirit would get in the way of the bubble wrapped life I had in mind for him.

Then came his autism diagnosis. How will I protect him now?

Will he be okay?

Will he ever talk? Be bullied on the playground? Or even attend school? Will he have a job? Drive? Live independently? Fall in love? And the spiral to nowhere continued.

As parents, we never want our children to feel pain and sadness. Hunger or cold. Lost or confused. It tears me up from the inside out when I look into my boy’s eyes and see how confused and frustrated he can become.

The other day, during one of his meltdowns, his 2-year-old little sister hugged him and would not let go. Eventually he started laughing because it became a game to try and get her off of him. I noticed something that day. The way she looked at him. It was simple and unconditional adoration.

In her eyes, he isn’t “different”. He is her big brother. Her hero. Her person. I prayed that night that she will always see him in that same light. As time passes, the weight of his world will inevitably impact hers more. New challenges will arise, they both will grow and change, but God, I hope that their unconditional love remains the same.

My children are both unique, and made for one another. I can’t catch them every time they fall down. But I can teach them how to help one another back up. To comfort one another. To laugh together.

My son has a wonderfully badass tribe of family, friends, doctors, therapists, interventionists and peers to help raise him up as high as he can go. And he has her.

So just like that, I had my answer. He’s going to be okay.

Wilson and Charlie