Interview with Temple Grandin about her life, living with Autism
 
 

THE BOND THAT CAN'T BE BROKEN

A sibling is possibly the longest relationship you will have in your life. When a child first gains a sibling they have essentially no bonds. Eventually that little wrinkly baby grows into a trusted playmate and lifelong friend. The luckiest of siblings have an unbreakable bond that lasts no matter how frayed the everyday relationship becomes. My brother and I fall into that category.


My brother and I didn’t form a bond in any of the usual ways. Our childhood wasn’t the classic sibling experience you see on T.V. and movies. You see, my brother Dakota is severely autistic. Autism Spectrum Disorder is a developmental disorder that appears in the first three years of life and affects the brain’s normal development of social and communication skills.


Dakota can say some words, but because of the severity of his Autism, he is unable to hold conversation. He is mentally on the level of a two-year-old. This means he cannot tell anyone what he needs or feels. He also is unable to take care of his basic needs such as brushing his teeth, preparing himself a meal, or even managing a bathroom visit by himself. The burden of his care falls on my mother and I. As a result, my younger years were filled with life experiences that are unique to only a certain few that were blessed enough to have them.


I have always known my brother was “different.” When he was small he would cry every time we left home or anytime we visit a strange place. This is because children with autism become distressed whenever their routines are changed. On our weekly grocery store visits, Dakota would cry from the time we walked in until the time we pulled out of the parking lot. I’m sure we were a sight to see. My stoic, hard faced mother pushing a buggy containing screaming Dakota, and me trudging obediently behind struggling to push the buggy with the groceries.


Dakota was also super sensitive to loud noises and didn’t like to be held or snuggled. Because of my brother’s condition, we didn’t get to do many fun things. I often was confused why I didn’t have a sibling like my friends had. Sometimes I secretly wished I had a brother that I could play
with instead of one that constantly dominated all the attention. Mom always told me that Dakota was a gift from God. She said I should be proud our family was chosen to receive such a blessing. I said I wished that the blessing at least knew how to play Monopoly.


The breakthrough in our relationship came when we both started school. In the fall of ’96 I started kindergarten and Dakota started special education preschool. Preschool did wonders for my brother. He still cried everyday when being dropped off or picked up from school, be made great strides in learning how to cope with change. Up until this point he had only said a couple of words, but within that first year he learned to say dozen more. His social skills also improved and he would actually make eye contact on occasion.


Over the next couple of years our relationship blossomed. He became one of my best friends and most cherished playmates. We made up a game where we would put his tall spiral race track on the edge of the coffee table and race matchbox cars. At the end of the track, the cars would land on the carpet and after a few rounds the carpet would look like a junkyard for miniature cars. Other times we would line up all his action figures facing the same direction. This took hours because he had so many. My brother and I formed a language of our own. We played in a world of nonverbal communication and that was fine with me.


Having a brother like Dakota made me stronger. The first time I remember someone being mean towards my brother I was in second grade. We were walking into school and Dakota was babbling loudly and excitedly. We were almost to the doors when an older boy yelled at him to “shut up.” I was so mad I ran at him, grabbing the front of his jacket.


“Don’t you dare tell my brother to shut up! He’s autistic and he can’t help it!” I yelled at him.


The boy just walked away, possibly more stunned than I was about what had taken place. I then grabbed Dakotas hand and proudly led him into school. This wasn’t the first time I had to
take up for my brother. People are generally afraid of what they don’t understand, and most people don’t understand autism. As a result they make fun of it. I became my brother’s fiercest protector. Like an umbrella that protects people from falling rain, I protected my brother from the teasing and insults.


High School was the first time I went to a different school than my brother. It was weird not having to worry about him all day long, but also hard to be apart from him for eight hours a day. However it did give me more time to focus on me. I joined several clubs and started running track and field. My freshmen and sophomore years I won “Student of the Year.”


Our relationship once again changed and blossomed as I realized my brother didn’t need me to baby him anymore. He had made many strides in development. He had become nearly nonchalant about change and now relished in doing things he used to despise such as shopping and eating out. While he still couldn’t hold conversations, his vocabulary exploded to over two-hundred words. He loved interacting with people and would genuinely smile and hug family and friends upon seeing them. Dakota had come a long way since we were two tykes walking into school together.


My mother always said that Dakota is one of the only people that will truly love me unconditionally. I never realized how true that was until my teen years. He can’t tell me how much he loves me so he shows it through the little things he does. If I am sad, he hugs me. If I fall asleep on the couch he covers me in a blanket. And in high school when I would go out with my friends on the weekends, he would stay up, pacing the floors (often way past his usual nine-o-clock bedtime) until I got home. The first thing I would see as I pulled in the driveway was his face, grinning and peeping through the window on the back door.


When I chose to come to Franklin College, I did so with a heavy heart. Although I loved the school, the distance between it and my Virginia home meant Dakota and I would have to go months without seeing each other. I didn’t know who it would be harder on. I sensed our relationship would again blossom and change.


My mom tells me that for weeks after I left that Dakota would try and wait up at night for me. His face would appear in the window at every car that happened to drive by. He didn’t know where I was and constantly babbled about “sissy.” His confusion soon turned to anger. He was moody and grew upset if anyone mentioned my name. I also missed him. College was a huge change and it was difficult going through it without my baby brother.


When I came home for Fall Break, it was the first time I had been home since leaving. Dakota was distant and seemed to be angry at me for leaving. I was very upset and felt guilty, like I had betrayed him. My mother sorted me out however. She told me that Dakota would get used to the separation and that I had to worry about me. It turns out she was right. Dakota finally accepted that I was “at big girl school.” He is back to his old self and knows that I’m still going to be around, just not every day. I have adjusted well too but still look forward to visits home.


Each time I go home I can count on seeing my brother beaming at me through that window. Even with four hundred miles between us and months between each visit, I know our bond is unbreakable. Separation strengthened our bond and years of looking out for each other, learning to communicate without using words and always understanding built it.

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