My younger brother Daniel has Down Syndrome. While I was growing up, the focus was on helping him, as it should be. I’ve noticed over the past ten years or so that people are recognizing the unique challenges faced by the siblings of people with disabilities.
Daniel was the focus of the family from the time he was born. I was almost seven, and I felt fiercely protective of him from the moment our mom brought him home. My older brother had threatened to run away if she brought home another girl, so when Daniel was brought home they had their bond, too. Since I don’t know my little sister well I will mostly leave her out of it, but she put as much time and energy and love into raising him that the rest of us did.
We reworked the house to adapt to Daniel’s needs. We lived in the top two stories of a three story apartment building, with the two stories connected by a spiral staircase from a bedroom to the basement. From that basement to the front door of the apartment stretched a road made of carpet where Daniel, with our encouragement (resulting in a lot of jeans with holes in the knees), learned how to creep and crawl. An overhead ladder was set up in what would have been a living room, and we all had calloused hands from swinging on it. We started home school about that time, too. That made me happy, since I didn’t much like people and I really didn’t appreciate my teacher not letting me read when I finished my work before anyone else. We did patternings, which taught Daniel how to move better and how to breathe more deeply.
I slept in the room next to his, and when he had night terrors I would get up to help him calm down. It got to the point where I’d wake up a little bit before he did so I could calm him as he woke up. I still hate being awakened by loud, strident noises. Adrenaline, while useful, is not a rush I need to wake up.
People often said “I’m sorry!” when we explained that Daniel had Down Syndrome. It made me furious. I didn’t want anyone to be sorry about him. He was my little brother, a wonderful person with a wicked sense of humor, and by saying they were sorry they seemed to be implying that I should be, too. Someone used the word “defective” in my hearing once and I yelled at them. I think they were a bit startled by that, as I was generally fairly well behaved.
I was sometimes embarrassed by him. He was terrified of ceiling fans for a while, and he’d hide under tables to get away from them. I’d glare at anyone who had the temerity to stare, but part of me wanted to pick him up and take him away where no one would judge him, or me, anymore. I never showed him that he embarrassed me, though. His feelings were, and still are, much more important to me than mine.
He knew he was different, and I saw it hurt him, and I couldn’t protect him. I still sometimes have nightmares about that.
I want the best for him. I want him to be happy. I wanted him to be fully part of the community, which was rather funny, in retrospect, because I’ve never been particularly good at that.
The most important graduation I have ever attended, far surpassing my own, was Daniel’s high school graduation. He was part of the class. He walked up with them, received his diploma, and walked out. I have never seen him so happy, never seen him smile so hard. He was shaking from the emotion when he hugged me, and I was very close to tears. I was deeply proud of him. He was a valued part of that community, that school, and that meant so much to me that I stumble when I try to explain it.
He makes his way through life with blocks I can’t fathom. My father once said that he would never be as proud of any of the rest of us as he was of Daniel, because Daniel had to fight many times harder to achieve the same things. That hurt at the time – however true it is, and I understand the feeling, I still wanted to be able to know that my parents would be as proud of me as they were of him. It’s an odd place to be, knowing where the sentiment comes from, agreeing with it on some level, but always wanting approval for what I worked so hard for, too.
I wasn’t angry at him growing up, but I was angry at the rest of the world and how cruelly he was treated, sometimes thoughtlessly, sometimes with complete awareness. Even now, the word “retard” makes me angry.
I think I took a lot of things for granted before he was born. I don’t take nearly as much for granted now. Everyone’s experiences are different, and often those experiences are not visible. Looking at me, people generally see someone reasonably smart and relatively confident, but underneath there is the person who still wishes desperately to protect a little brother from a world that doesn’t bother looking at him past what his face looks like. They make judgments based only on that and move on.
Having him in my life has changed how I see the world and, I think, made me less quick to judge. I try to understand people for who they are based on who they show themselves to be, without making quick assumptions based on appearance. I’m not always great at it, but I am always working on being better. I sometimes get burned because I trust too much, but I made a decision that I’d prefer that to hurting people by making assumptions.
Daniel is pretty stable these days. He lives in a good situation and seems to be happy, or at least content. When he and most of the rest of my family moved to another state, I thought long and hard about joining them, but eventually decided that I needed to make a life separate from them. It’s probably better for him to not have his big sister hanging over his shoulder and butting in all the time, anyway. I miss him a lot.
It’s an interesting journey, loving someone with a disability, and one that pulls reserves I didn’t know I had. I am still very protective of him, love him dearly, and would do just about anything to make his life better, but I also understand how much he changed our lives, and I can begin to understand why people said “I’m sorry” about Daniel. I still don’t agree with them, and I’m still not sorry he’s in my life, but he did drastically change how our family worked and how we lived our lives, and I can understand people thinking that must be a bad thing.