What it’s like to have a sibling with special needs

When my brother, Elliott, and I were little, a lady was rude to him. We were in a gym locker room with our mom. He was sitting still making the same noise over and over, and after each sound, he giggled. Another little girl my age asked:

“What’s wrong with your brother?”

I replied very matter of factly, “He has a learning disability.”

This answer satisfied her completely, and she returned to her own world. Her mother disdainfully questioned, “What does that MEAN?”

Before my mom could intercede, I planted my tiny fists on my hips and told the lady,

“It means YOU have to be patient.”

The word epilepsy is often equated to a crazed person convulsing on the floor and foaming at the mouth, but epilepsy takes many forms. Elliott was born with LGS, a rare and puzzling form of epilepsy that causes a variety of seizures and cognitive delays. He is often mistaken as autistic.

Elliott understands everything that goes on; he just needs a little more time to respond. Moving around simply takes more effort, and if you add that to his stubborn streak, moving from point A to B can take awhile.

What is straightforward for one family can turn chaotic in mine, but the non-normalcy of my family leads to great fun!

Elliott often doesn’t make eye contact when he first meets people, and this gets mistaken as shifty behavior. My parents and I have grown accustomed to good-naturedly explaining to TSA officials that the batteries he doesn’t want to take out of his pockets are for his endless collection of singing toys and not a bomb. We’ve also learned to politely direct them to his medical alert bracelet.

Just like I eat slower when I’m chatting with friends, Elliott has a hard time eating in restaurants. There’s usually just too much going on for him to focus on his plate.

Routine doctor’s appointments and dentist visits still cause Elliott to shake and often repeatedly whisper, “Please don’t hurt me,” so we still try to coordinate mine and Elliott’s vaccines/booster shots so he can see me go first.

Also, even though he’s eighteen, my mom or dad still brush his teeth because as my parents put it, “Can you imagine what we would do if that kid got a cavity?”

We make a wonderful game of it.

When we were little, I was often the only person who could understand Elliott’s speech. When it was obvious that he was different, when we couldn’t go to parties or near strobe lights, people needed less explanation. The majority of the world is not like that lady in the locker room.

I cannot express how proud I am of Elliott for learning to walk, swim, and do a multitude of little things that symbolize independence. However, in some ways, the more progress Elliott makes, the worse he is treated. Last summer, my family and I were filing into a cruise ship theater. The water was a bit rough on that day, and the slight rocking made placing each foot securely in front of the other difficult.

For Elliott, it was even harder. He could do it, but he needed a bit of extra time.

As the curtain began to rise, a man behind us yelled at Elliott and I to hurry up. Trying to find my way through a darkened rocking space with someone yelling is difficult enough for me, and it was all the more disconcerting for Elliott. The man grew increasingly more irritable as our pace slowed.

To the crowd, Elliott was just another rude teenager, and most of them frowned at us. Elliott walked more slowly as the man’s yelling distracted him.

“Just keep moving forward, little man. You’re doing great, and we’re almost there,” I told him.

I did not have the words to talk to the man, so I ignored him. We still enjoyed the show.

Later, my dad told me that when something like that happens when he’s with Elliott, he politely says, “We’re doing the best that we can. Please just give us a minute.”

Elliott looks “normal,” and as he walks easier and becomes more and more articulate, it is less apparent that he needs extra time. More and more people act like the man on the ship.

While we gladly give up our seat on a train to a boy on crutches, we may not be inclined to do so for a healthy-looking 18-year-old. Elliott looks “normal,” so people have “normal” expectations of what he should and shouldn’t be able to do.

There are countless well-meant comments like the nice waiter who told Elliott he didn’t want “that baby thing” when we ordered him a sippy cup. His attitude changed to embarrassment but continued kindness as he watched my dad help Elliott order. The trouble with an invisible disability isn’t just that people don’t know to accommodate. It’s also that people often become embarrassed when asked to do so.

I love it when people are interested in my brother, and I never want them to be embarrassed by honest mistakes, but people often grow uncomfortable after I tell them why Elliott won’t be following me to Stanford. The expression they get on their face is similar to the one they get when I explain that while I ran cross country in high school, I’ve had two hip surgeries and can’t join them for ultimate Frisbee.

Depression, anxiety, epilepsy, autism, arthritis… the list goes on and on. Everyone has something whether it’s a disorder or simply an off day. The way to cross these barriers is through patience and empathy.

I cannot imagine my life without Elliott. He is one of the only purely happy people I know. When we recite Lego Movie or Disney quotes to each other, or when I pretend our house cat is a lion, he laughs hard and full so that no sound comes out and all he can do is shake and smile.

Saturday mornings away at college make me the most homesick. Elliott wakes up between 5 and 6:30 every day, wakes the whole house up to have breakfast, and then takes a nap. My mom usually makes him wait a little before getting me up. On Saturdays at home, I wake up when I hear him turn the doorknob. He often walks in goofily — sometimes as a pretend duck and sometimes as the latest Disney character — and pets my head whispering, “Madeline, Madeliiiiiine, wake up! It’s your brother and he loves you so much.” He’ll then curl up next to me playing his Gameboy and asking me to get up and have breakfast (second breakfast for him). By the time I do, he’s back to sleep.

There are so many ways of doing things that fall outside the realm of normal! Patience, love, and kindness allow our collective weirdness to coexist.

I am so proud of Elliott for all that he continues to learn and do, but there is a small part of me that is also scared of the world he is heading into. Think twice before telling someone to hurry up; you never know what they’re handling.