Note: Tommy’s big brother Paul wrote the following post (for a blog he and Laura were keeping online at the time) after they hiked in a remote part of Iceland together along with Laura and Jordan, while Jordan was making a documentary. We wanted to share Paul’s post here, so Tommy’s followers could enjoy hearing Paul’s perspective on this amazing adventure with Tommy.
Tommy and Me
My brother and I have different outlooks on life. Not so much on politics or social issues, but how we interpret the events around us and formulate an impression of our surroundings. For example, I can consider the implications of my actions on others, estimate the cost on a good or service, and differentiate a raised voice from anger; he can not. That is not to say that he is unintelligent; Tommy is autistic.
Surprising as it may seem, the biggest challenge on our Iceland Hornstrandir trek was not the weather or the challenging hiking, it was having Tommy and my childhood friend, Jordan, along for the ride. Jordan is making a film about my relationship with Tommy, and this involves isolating us in provocative (stressful) situations and extracting our thoughts on life. This was to be the climax of his documentary. For me, the fact that Tommy got a trip to one of the most isolated regions of Iceland was very rewarding; I doubt that that many autistic adults get similar opportunities.
As rewarding as it was, anyone with a sibling will know how annoying they can be. On top of that, having Tommy along presents some unique and interesting challenges:
Food
Of the many parts of his brain that do not function “normally”, the mechanism that indicates hunger or satiation appears to be non-existent. When on a 5-day trip with no external access to food it can de disconcerting when you look away for a second and he has consumed an entire bag of carrots or, when offered some trail-mix, attempts to take as much as he can possibly fit in his hand.
Tommy is also sensitive to gluten and dairy, but relies on others to tell him what is gluten- and dairy-free (He frequently tried to steal yogurt from us). Despite him frequently proclaiming: “I am a VEGETARIAN for breakfast”, barely a hour went by without him asking us what our favourite cuts of chicken were.
Tommy often imitates actions and speech
Hygiene
Tommy, like many others with autism, fixates on routines. In a normal day at home these are calming activities, but out of context they can be a source of frustration for him as well as for me. Tommy wears contact lenses and never forgets to put them in or take them out. As soon as he wakes up he begins demanding to change his glasses for contacts, which requires washing his hands and a looking in a mirror, things not easily done on a beach facing the Norwegian Sea. And though obviously none were present, He often suggested showers. Interestingly, however, he never seemed to go to the bathroom without me asking if he needed to.
Big pack, big smile
Sleeping Arrangements
For simplicity, I sleep in mostly the same clothes I wear during the day. This was unacceptable for the more affected in the crowd. Tommy’s demands for “nice warm japamas” were not aggressive but… unrelenting, and after a long day hiking he is quick to declare “I think I’m ready for bed!” even before tent was set up (for which his help was more of a token gesture).
Fitness Level
Laura and Tommy displaying his favourite pose
People we met often commented that Tommy had the largest pack of our group, considering it strange that the “disabled” member of the group had the biggest load. What they had trouble comprehending is that Tommy is an elite athlete, competing at a national level in long-distance running, cross-country skiing and flat-water kayaking. He was by far the most fit member of our group. In campaigns for the acceptance of disabled people I always see the slogan: “see the ability”, and in Tommy’s case this an especially important. Even with the biggest pack, our breaks would usually end quickly with Tommy, a smile on his face, stating: “I think I’m ready to keep hiking!”.
Smiling for the camera
Tommy was non-verbal to the age of 7 and even now, at 21, he borrows most of his phrases from Disney movies. He was behaviorally difficult, often self-injurious, and until only a few years ago I would never have considered a trip like this possible. That fact that we pulled this trip off without a hitch shows just how much progress he has made, and how much more is possible. And on top of everything else, I’m finally getting to spend some quality time with my Bro.
Visit Tommy’s youtube channel if you want to learn more about his life.
