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A Sibling’s Perspective

This article is about Legos. As with many things in my life, building Legos was always an activity where I loved the end result, but hated the process. I felt as though even if I followed the instructions step-by-step, I would always end up with a lopsided ship or a strange-looking monster. I never had the patience to try to make it work, nor did I have the creative capacity to generate something of my own. This was not so for my brother. Jay lived off Legos. When he received the boxes, he would throw away the instructions and make something amazing out of every little piece he had. I could never understand how he did it, for there I was, fifteen, already in honors and AP classes, never once having below a 3.5 GPA (and a little full of myself), and I couldn’t even put together a Star Wars spaceship made for four-year-olds. Then, there was Jay, eight years old with the recent diagnoses of autism spectrum disorder, a severe anxiety disorder, ADHD, and basically every learning disability in the book, and he could create masterpieces.

Jay has always had the unique ability to make sense out of the tiniest details. While I saw one small blue block that I would later painfully step on at midnight, he saw the beginning of a castle or dragon. Growing up with my brother, I knew he was special, but it always bothered me that everyone else only used that word when describing his weaknesses. Early on, his teachers would constantly bring up his special needs, commenting on how disruptive he was in class or how they felt concerned for him or the kids around him, but no one praised his special strengths.

Sure, he had his issues, as we all do. I did not always understand why he had a full-blown meltdown over something as small as taking a picture, or why he would perseverate on the same word for days or even months. I had to learn not to care what people thought of our family eating at restaurants or shopping at Target as we tried to calm my brother before having a panic attack about the texture of his food.

At first, I resented this part of my life. I felt such a mixture of emotions about our family’s situation that I didn’t always know what to do with myself. I was constantly jealous of friends whose family vacations made me realize they are actually supposed to be enjoyable experiences. I hated feeling like I didn’t have a childhood, that I had to grow up at a young age to help take care of my brother. I also lived with an ever-gnawing guilt that I felt these things, because I knew he couldn’t help it. But more than anything else, I hated being known as the family with the “bad kid” in our neighborhood, Jay’s school, and basically any public place. For though there have been a fair share of difficulties and hardship that have come with his disabilities, they were never viewed as limitations or weaknesses in my family. I am firmly convinced that Jay’s challenges have allowed him to grow into someone who is kind, compassionate, insightful, articulate, and creative. To know that others don’t see him this way is heartbreaking. I would never change who he is to fit the world. I want to change the world to fit him.

Too often, our world looks at those with disabilities like my brother’s and brushes them aside, disregarding them as a needy group that is dependent on others but makes no real contribution to society. Even the most well-intentioned can fall into the “Good Samaritan trap,” looking to help and meet their needs, remaining completely ignorant to the fact that they also need them. People with special needs have as much to give as they need to be given to, and to dismiss this is as foolish as calling a Lego spaceship with a gaping hole in the middle a completed project. Only once we acknowledge this hole and recognize our need for the pieces different from us will we work more diligently to get them what they need to become included. Together, we can build a more beautiful and colorful world, if only we let them join us.

 

With Autism Awareness Month coming to a close at the end of April, it is important that we continue to support those with disabilities regardless of what month it is. Befriend and learn from those different from you, and work to build a more colorful world together.