Perspective: My salute to Autism Awareness Month

I have two brothers. Anthony is 11, and he’ll tell you his thoughts the second he thinks them. Addison is 8, and I have no idea what his voice even sounds like.

April is now over, but my baby brother still has autism.

Addison was diagnosed with autism at around two years old. My parents used to guess what his first words would be. They thought it was interesting how our first expressions ended up being wholly indicative of our eventual personalities.

My first word was “no,” because I’m chronically and perpetually stubborn. Anthony’s first word was “mine,” because he’s always known exactly who he is and exactly what he wants.

Addison’s never came. We waited. We’re still waiting.

I watched my family shut down. I watched everything turn upside down. I watched my brother get scanned and assessed over and over again.

There are stacks of diagnoses and explanations, photocopied and filed away in thick binders in my home.

He has autism. Severe cognitive impairment with the critical thinking and interpersonal skills of someone half his age, highly-developed motor skills, but nearly nonexistent verbal abilities.

I watched my mom look in the mirror as she wondered if she was inadequate at her core. I watched as my dad held himself steady, trying to pretend that it didn’t kill him that this was a situation he couldn’t control.

Well, we’re human. So we did that human thing where each one of us blamed ourselves. It’s been years, but I know that my parents still blame themselves.

Uncontrollable disorders are not human. They negate and diminish all that it means to be human.

Autism is a disorder that exists on a spectrum. Everyone who has autism experiences it differently.

Some are high-functioning with poor social skills. Others are low-functioning and struggle with verbal, motor and social skills.

It’s a multi-faceted neurological conundrum on multiple levels. Extensive research has been conducted and many methods exist to help affected individuals and their families cope.

Answers are hard to come by, but you keep going. People who care for individuals with autism have to accept the fact that it’s about getting through the day, but not exactly knowing what you’re hoping for.

Individuals with autism are not stupid. They are not crazy. Many experience the world ultrasonically. Every emotion, physical sensation and interaction can feel heightened and understandably overwhelming.

My brother used to bite when he got overwhelmed. He would also flail and scream.

Once he got overwhelmed and bit my arm when I was 14. I sucked in my tears as he drew blood. I didn’t know what to do, so I just let it happen.

We locked eyes as I waited for his release. I washed up and bandaged myself. I rubbed his back and he watched me sob. All I could think was to choke out the words, “Please, don’t do that, that’s not what people do.”

I don’t know if he understood what I was saying, but I think he understood that it hurt.

That was the last time he bit me. He’s stopped hurting other people on accident, but then he started hitting and biting himself. I’ve realized that this means he would rather hurt himself than hurt us.

However, with behavioral therapy, patience and communication, he’s gotten better. We play and keep him active to help control his energy.

Addison doesn’t sleep well. Whatever goes on in his mind keeps him up. It’s been hard for my family to handle his sleeping schedule.

My mother refuses to sedate him. She refuses to give him harsh medications. We stick to organically-based alternatives like melatonin.

I learned how to function with minimal sleep partly because I couldn’t watch my parents take it all on by themselves. We take turns.

Whoever has work or school gets to sleep. Me, my mom and my dad all rotate. Sometimes Addison has rough nights and doesn’t sleep at all. We keep going, together.

In the summer, he’s my baby. I stay home so that my parents can recuperate. It’s been a few years now, and he’s getting better. I’ve learned not to mind it; sleeping just means missing out on life, right?

Throughout the years, he’s undergone many different kinds of treatments: consultations from neurologists, speech therapists and autism specialists.

It does feel like we’ve done everything.

Changes in his diet, changes in his medicine, changes in our daily routine. We’ve learned different exercises to encourage him to communicate with us. He even has an iPad and special apps that help him express himself.

We’re fortunate enough to live in an area where our school district has a fully-functional special needs facility and he’s able to go to school with peers, work with trained teachers and participate in the Special Olympics.

It’s difficult to deal with inhibiting conditions positively. Our life is not always fundraisers for research, bumper stickers with puzzle pieces, lighting blue candles and doing events in April.

Anthony used to get sad that he didn’t have a brother he could play video games or soccer with. His friends would ask him why his brother was weird, and I’d avoid talking about any of this, so my friends would actually forget I even had a second brother.

Sometimes a bowl full of food will get knocked over. Then, a cup will get knocked over. There will be glass on the floor, a child that’s crying and all you have to do is clean up, make everything again and keep going.

Diapers still need changing, because toilet training a child with autism is still an ongoing battle. Vomit happens, and it often feels like perpetually taking care of an infant.

It took me a while to figure this out and start feeling like this, but it’s hit me. Complaining about my brother is a complete disservice to all that we have been through and any hope we may have for the future.

This is not my brother’s fault. This isn’t anyone’s fault.

He doesn’t deserve this, not a single person does. 

I wonder what goes on inside of his head a lot, but I don’t doubt that it’s probably beautiful. He may actually be the best person I know in the entire world, and we’ve never even had a single conversation.

I love him. He’s this amazing little human, who will laugh out of nowhere, snore in his sleep, wipe away people’s tears and when he smiles, he means it.

He has no idea how kisses work, but he knows that kisses feel nice. They make him feel fuzzy inside just like everyone else.

When Addison wants to give someone a kiss, he’ll stick his face onto theirs, pull away, look them in the eyes and smile. Those are some of the best kisses I have ever had because I have never doubted for a second that he loves me back.

He has barriers in his life that he cannot comprehend. My mother watches him board his school bus terrified, because he doesn’t have the power to tell us if anyone hurts him. The future feels like it will always be uncertain.

I will not pity him for the things that we cannot help. I refuse to see only his limits. He is inarguably authentic in all that he is, and that is more than a lot of people can say.

Every though that my brother has ever had remains a mystery to me, but I will make any sacrifice to ensure that he is safe, happy and loved. If my brother has hopes and dreams, I wish I could find out and help him reach them.

Every time April comes around, I see those autism puzzle pieces everywhere.

All that I can think of when I see those sometimes, is that I don’t know if any of those puzzle pieces is my baby brother’s favorite color. I don’t know my baby brother’s favorite color.

However, I can speak, I can write and I can share. There’s a world that I don’t know that’s trapped inside of his skull. This is the best way that I know how to fight for it.

(2) comments

Aleanna - thank you for sharing your story so eloquently. I have a daughter with cerebral palsy -- and your description of family life rings true for me. My daughter has a twin sister who could likely relate to what you say as well. Keep up the great work! ~Neva


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