This morning I worked from home. I’m very grateful to make my own schedule. I’m still working my ass off but, some days I get to do it in yoga pants, on the couch with an adorable kitty cat snuggled up in my lap. Today was a little different though, my brother joined me in the “office”.
He’s a great sight first thing in the morning; his big smile, his boisterous laugh. Even a chronic insomniac who is forever sleep deprived has to smile (psst…that’s me). “Hey”, I grumble as I open the door, squinting through the sunlight. “Hi, sissy!” His eyes are big and unsure. He still gets nervous coming to my house simply because it’s not his. He clutches his Seahawks bag, which he takes everywhere. I don’t need to look inside, I know it carries his iPad and headphones.
I guide him to my living room, turning on the coffee pot along the way. The TV is already on, with Netflix ready. Without hesitation, he grabs the controller and starts scrolling. He always gets excited because he doesn’t have Netflix at his house. Boss Baby!!” he exclaims, hovering over the picture. “Cars 3!!!!” he shouts again, immediately choosing the Pixar film. His routine commences: he pulls off his shoes and carefully lines them up under my coffee table, takes out his iPad and starts an episode of Courage the Cowardly Dog video before tucking his bag next to his shoes meticulously. As Cars 3 starts he smiles and begins moving his hands and fingers in a robotic motion close to his face, squinting at them out of the corner of his eyes. I can’t help but smile… he’s happy.
Dear World- meet my 23-year old brother, Brandon. He’s my everything, my best friend. He also have a developmental disability: autism.
Oh- sorry. How rude of me. I guess I should introduce myself now, too. My name is Danielle. I am a self-proclaimed Disney addict, lover of coffee and cat cuddles, board certified behavior analyst and a fierce sibling advocate.
So my brother has a “developmental disability”. What does that even mean? Well, I am almost positive you’ve heard of autism, unless you’ve been hiding under a rock. If that is the case, I am not judging! I hope it was a cozy, warm rock you were under and there were cookies or pizza. Or both, if you were lucky. Having autism means that my brother’s brain works very differently. He struggles with communication – both speaking and understanding what others say. He is not always aware of his surroundings and how safe or unsafe they may be. While he’s SO good at so many things, some simple tasks like showering or cooking are harder for him. He needs tasks to be written down or presented one at a time and all those “adult” concepts like paying bills or managing money are beyond him. Oh and for the record, no- he’s not like Rain Man.
This morning I offered him breakfast. “Brandon, do you want a peanut butter sandwich or a banana?” He looked at me, wheels turning. His eyes told me that he wanted to choose. He hesitantly said, “Peanut butter or banana” and weighed the options with his hands. In these moments I feel like a shitty sister, I know making choices is hard for him let alone communicating them. I go to the kitchen. Peanut butter in one hand, a banana in the other and present them to him. “Which one?” I ask. He smiles and points to the peanut butter. Easy peasy.
We often have to be strategic about questions or choices we give Brandon and ready to help him if he gets stuck. We are continuously working on answering basic questions such as “What are you doing?”. But, OH MAN, when Brandon does say something you know he means it. When Brandon speaks, and it’s unprompted, the world stops. Every word that leaves his lips imprints on my heart. Sometimes it’s a small joke or a comment that makes you realize that he’s been listening this whole time.
Several years ago, my mother was diagnosed with lung cancer. She was lucky that it was small and easy to remove. While she was in the hospital, I explained to my brother that she was sick, at the doctor to get better and would be home soon. I remember the day I took him to see her. He looked so scared, although he didn’t say a thing. His knuckles white from clutching his bag, eyes darting to my mother in her hospital bed. The day she came home, Brandon waited at the window patiently. My mom drove up and he began jumping up and down chanting “Mom’s home! Mom’s home!”. He waited at the door, bouncing on his tiptoes. When our Mom came in the door he exclaimed, “Mom! You’re home! I love you!” and very gently hugged her. To give you some perspective, I can count on one hand the number of times Brandon has said “I love you” unprompted. When he hears it, he says it back all the time. But those words very rarely come out the blue. Brandon may struggle telling me what TV show he’s watching but he has his own thoughts, his own words. And they are beautiful.
This morning, Brandon doesn’t say much. Except when I yawn. We have a great game that starts when one of us yawns and the other yells “No yawning!!”. It usually ends in fits of laughter, holding hands over our mouths to stifle the giggles. This morning Brandon is gentle, “Sissy- are you tired?”. He smirks, but I can tell he knows that I’m actually exhausted. “No way!” I yell, crashing a pillow against his head.
Brandon is a very capable man. His success hinges on the tools he’s given. We found out long ago that he needs a schedule every day. No, that is not a suggestion. Brandon craves structure and is less anxious when he knows what’s coming up. We have had arguments in the past because I simply wanted to stop for coffee before the grocery store, but it wasn’t on his schedule. Cue Brandon screaming “No, no, no!” and me screaming “I JUST NEED COFFEE!!”. Then cue my mom saying, “Dear God, are we there yet?”.
When my mother comes to pick Brandon up, his body sparks with excitement. While he loves me, I know he’s so happy to go back to his home. That’s his safe place, where he knows exactly what to expect. “Go home?” Brandon asks with bated breath. I imagine him going over his schedule in his mind. Shower, get dressed, brush teeth, shave, go to Danielle’s, home. Checking off each item as it comes to an end. “Yes- let’s go home”, my mom agrees. Within seconds, yes seconds, Brandon has his shoes on and bag packed. He checks his watch and I can’t help but laugh. That is Brandon’s way of saying, “I’m waiting…”. It’s such a beautiful part of his personality that I treasure, even when I’m looking at Target candles and he’s checked his watch 45 times. Come on, man. Choosing a candle is hard! Give me a break!
Brandon hurries towards the door and I annoyingly make him give me another hug. “I love you, Brandon”. I hug him tighter today and he squeezes me so tight I can barely breath. It’s okay though, I’ll take it.
“Oh. Goodbye, Sissy.” Brandon makes an effort to give me eye contact and I can tell because his eyes always grow in size when he’s really trying. He gives a slight wave. As he opens the door he even bids the cat farwell. “Oh. Goodbye, cat Nova”.
Having a brother with a disability is not easy. In fact it’s often frustrating, exhausting, emotional and just really hard. I swear a lot. I cry a lot. I’ve grieved a lot. But, I also love and laugh a lot. My brother has taught me so much about life. He has taught me that loving with your whole heart is key to being happy, that joy can be found in watching Cars 3 or scoring a new PEZ dispenser. He has taught me that people’s expectations of what your life should look like are usually stupid and being your true self is the best way to live. He’s showed me what it means to be a good friend and he’s teaching me every day how to be a better sister. Even more than that, Brandon has showed me that anyone can do anything they put their mind to. All they need is support, love and maybe a written schedule.
Brandon is just one man. He doesn’t represent all people with autism or all people with developmental disabilities. However, the moral of the story is the same. No matter their challenges, people with developmental disabilities are people. They have hopes and dreams. They make jokes, they enjoy being with their friends and family. They can work, go grocery shopping or hit the gym on a Friday night if they so choose. Their journey may look different than yours and mine, but their end goal is the same: all people, no matter their abilities, want a happy and fulfilled life.
If you would like additional anecdotes from Danielle and her brother Brandon’s relationship, take a peek at her blog!