Designing a Home for My Brother with Special Needs
How designing for my brother helped me know him better.
My memory of going on the 2010 National Boy Scout Jamboree is filled with mixed emotions. The trip was a combination of a three-week tour of the East Coast and a weeklong camp at Fort A.P. Hill in Virginia. Throughout, I had once-in-a-lifetime experiences, but...I was confined to doing it as a boy scout. I was less than excited to be traveling in the tan, uncomfortable uniform: I saw the outfit as a marker of a “forever-virgin” and dreaded the constant public eye while wearing it. Despite my teenage angst, the friendships and memories I made on that trip last to this day. The most important memories, however, were from my interactions with my little brother Cole.
Cole has epilepsy and some developmental delays due to his disability. His seizures cause sudden falls that have led to traumatic head injuries. Even though I wasn’t alone looking after Cole, during the Jamboree I felt responsible for his safety. Fortunately, my older brother came along as a leader to help with any challenges. Between the two of us, we were with him, day and night, making sure that he was never alone or got lost. If he had a seizure, we would be there to catch him, hold his head from hitting any objects, and to check him for any injuries.
On the last day of the trip, we went to Busch Gardens Williamsburg. After four weeks of travel, this was what we were all waiting for; we were a group of 30 teenage boys, chomping at the bit to ride some of the largest roller-coasters in the world. The air was hot and muggy; a typical Virginia August day. Everything was perfect: short lines, great rides, a pocket full of cash to buy junk food. Cole enjoyed every single ride. He’s never deterred by roller coasters. It didn’t hurt that he won a couple stuffed animals in carnival games either.
In the afternoon, we gathered at the base of our next conquest: the Griffon. This monstrous ride boasted a 205-foot drop, reaching speeds of 75 miles per hour, and our courage was building to get in line. As a new set of passengers began their ascent it seemed like someone dropped a blanket on the sky. The sun disappeared behind dark clouds. Immediately our perfect day was transformed into something dark and bleak. Wind started howling and a gust sent objects everywhere flying. A prop hot air balloon (probably 30 - 40 feet tall) was ripped from the ground, flew a few hundred yards, and landed right in the middle of the tracks of the Griffon. We watched in horror as the car, full of passengers, dropped along the tracks and with a deafening “pop”, hit the balloon at 75 miles per hour.
At that moment, all hell broke loose: A torrential downpour fell out of the sky, lightning began to chorus and crowds everywhere began running for the exit. Caught up in the pandemonium, and traumatized by the accident, I ran. I ran and ran until I was out of the park, surrounded by my fellow Boy Scouts. Then it hit me. Where was Cole? In the chaos I had left him. My brother with special needs was now lost in one of the world’s largest amusement parks. With the rain beating down and all the concourses starting to flood, my brother and I immediately turned back into the park to find Cole, splitting up to cover more ground.
The next minutes were some of the most stressful of my life. I was running around a deserted Busch Gardens, with gallons of water falling on me. I was yelling for Cole, hoping desperately to find him. I must have ran through the entire park, but how could I return back to the group without Cole? Eventually my determination waned into despair as I realized there was no way I could find Cole on my own. Disheartened, I retraced my steps and exited the park. As I approached the crowd of scouts, I saw Cole. He had independently found a leader during the confusion and was able to get help. Finally, we were reunited, and I was completely relieved to see him safe.
Supervision and Independence
While designing a home for Cole, I wanted to sit down with him and sketch his house. Like a lecturing teacher, I didn’t let him draw until I had thoroughly described the difference between a plan, section, and elevation. I hate to admit it, but I was condescending as I told him about what a “good” architecture drawing should look like. He picked up on my tone and after a while he told me he was done. “Done drawing for today?” I asked. “No, I’m done working with you to design my house.” Cole and I have never really fought and this was the closest to an argument we had ever been. I packed up my things and left.
Who did he think he was? I was working hard to use the skills I had learned to design a house for him and he was going to tell me he was over it? As I stewed over this interaction somethings came to mind. Cole didn’t want to be talked down to. He may have a disability, but he understands more than I give him credit for. Reflecting back on Cole and my life alongside him, he is anything but helpless. When I treated him that way, he knew it and felt it, and let me know that he didn’t like it. As the architect it was up to me to apologize, rectify the relationship and attempt to carry the project on. Fortunately for me, he surprised me yet again, and fully forgave me.
After making amends, we were able to sit down together and discuss the project. Given our last conversation, I wanted to explore what it meant for Cole to be independent.This is challenging for him: Cole is twenty-five years old and has several older siblings. He’s seen us leave home and do things he may never have the chance to do. He has a strong desire to be his own person and live his own life, but epilepsy makes that tough. While designing his home, I wanted to strike a balance of giving him space to feel independent, but allowing for quick and effective supervision in the case of a seizure.
Because of Cole’s need for regular care, I began to think of his living space as an adjacent unit to be attached to my parents home. There were two options available as a connection point between the house and Cole’s space: Cole’s bedroom, and the main living room. Both had some advantages and disadvantages. The living room adjacency would provide access to family interaction, especially with Cole’s nieces and nephews, who he is very close to. However it would extend the distance between Cole and my parents. Ultimately, I decided to attach Cole’s home to his bedroom. The combination of adjacency to my parent’s bedroom and seclusion from the main living space of the home provided a balance of supervision and privacy.
I think I am constantly surprised by Cole. His disabilities are sometimes so visible that I forget his skills and gifts. In Busch Gardens, no one saved Cole. He solved the problem himself, finding help and getting out of the park. By giving Cole a space that balances supervision and independence, his abilities to take care of himself can be enhanced.
