Charlie

Siblings of people with special needs are exceptional humans who love deeply and selflessly. Charlie has had to learn about patience and sacrifice earlier than most.  She spends more time in the car helping me take Wilson to his various appointments and therapy sessions than anyone would want to, let alone a two-year-old. She does it (most of the time) with a smile on her face and a snack in her hands.

Charlie makes sure to tell me that “Wilson’s screaming” or “Wilson’s sad” (as though I didn’t already know) during his meltdowns and she attempts to give him hugs or bring him a toy or “chewy” to make him feel better. She has so much compassion wrapped up in that little body. She will not go to bed at night without hugging her brother.

Our silly girl loves babies, books and riding in grocery carts (thank goodness!) She is an in-de-pend-ent woman and likes to do things all by herself, which makes me sad, proud and nervous all at the same time. She will NOT be ignored and repeats herself, continuously louder, if you don’t respond.  This trait actually comes in handy in this family.

We ask a lot of her, often with her needs coming second to her brother’s. But don’t let her easy-going soul fool you. She is something fierce. She will not hesitate to b*tch slap a 90lb American Bulldog if she’s sniffin’ too close.

And if you want to mess with her brother, you’ll have to get through her first!

 

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.