Innocent Byamugisha's son, Mark B, has autism. He is 31 years old and recently took public transport by himself for the first time. In this special profile, we learn more about Mark B and his journey toward independence.
tell us about mark and his experience with autism.
When my son Mark — who chooses and insists that he is called Mark B — was about 2 and a half years old, he only drank from a specific red cup. And he preferred to wear primary colored clothing (yellow, red, and blue). It took us a while to understood why he took off certain clothing and threw tantrums when forced to wear certain clothes or shoes. In fact, at one time, he received support from his preschool autism program to help get dressed and ready for the school bus. Fortunately, he loved the bus rides.
Chairs in our home were not to be hastily moved, even slightly, into a comfortable sitting position. Jeopardy and his favorite weather man on TV were meant to be the only show on television. In time, we discovered that Mark could only thrive in a structured environment and with a strict routine. He needed to be taught functional skills explicitly and sequentially. Any change in his program and activities had to be planned in advance. The alternative would have to be something he liked to see or do. We accepted that predictability was the key to everything he did, and still does today.
Mark has limited output of words but a high desire to communicate. As much as he tries to speak, it is difficult to understand him, which makes him frustrated. He has improved in managing his frustrations and we continue to ask him to speak slowly and spell the first letter of words. By asking him as many guiding questions as possible based on the context, we eventually know what he is trying to convey (but not all the time).
What does Mark enjoy to do and what are his strengths?
His sense of direction and time is very strong and he has exceedingly good memory of events. Mark B gets disappointed when his Dad comes back from a trip on an earlier date than was previously planned. He will not appreciate presents or a birthday cake on the day before or after his birthday. It has to be the exact date. And he often gets up early to remind us to sing “happy birthday” for people that we do not even know — children of his former teachers, friends of his siblings and their families, relatives of a neighbor — literally anybody that has been kind enough to respond to his unwavering "fill in the blank" question: “Your birthday is….?”
He loves to engage in conversation about weather and sports. And he memorizes every day's temperature for the week. Socially, he may still be awkward but he is very loving and caring to his siblings in particular — being overly eager to introduce himself when he meets their friends and giving a thumbs up. But he gives hugs sparingly and only light handshakes to those most familiar to him. Mark also enjoys bowling. A score of 180 is a normal day for him, with or without bumpers!
What is one of the proudest moments you have had as Mark B's mother?
Well, Mark B is now 31 years old, lives at home, and is picked up by a van to go work with peers at a day program for adults with developmental differences. For us and those who have known him since childhood, Mark B has made tremendous strides. For the last couple of months, he has been engaged in an independent travel training program. After receiving one-on-one assistance and support from his travel trainer, the day had come for him to take the bus to a local community college, where he had been attending a communication and social skills class. I was not prepared to let him attempt the bus on his own but Mark was, so it seemed...
It is 7:41 a.m. Mark’s omelette is ready and I am feeling jittery about this whole independent travel plan. Mark keeps reminding me that today he is going to college by himself. It is the first time Mark will be walking alone from home. He’ll leave our house, proudly shut the door behind him, and cross Airpark Road to the bus stop on the opposite side. There, he’ll wait patiently for the bus in Maryland’s chilly February weather. A trainer from Mark's day program is supposed to be watching incognito from somewhere near the bus stop. I debate if I should go and watch him too. But I don’t want to discuss it and hope he does not see me.
I finally decide to leave the house at 7:47 am just a few minutes before he leaves and hope he does not know I am going to watch him incognito, as well. I wish him a good day and run out through the garage door. In the meantime, Dad is watching to make sure Mark leaves the house on time. But knowing Mark, this will not be a problem. Mark thrives on routine and time is kept to a tee. He would not leave a minute earlier or later than the 7:50 a.m. that is scheduled for him to walk to the bus stop. It is a 10 minute walk to Airpark Road, where he will catch Bus #90 scheduled for 8:10 a.m.
I walk really fast as all kinds of questions wrestle in my mind. What if the traffic light does not change in time to allow him to cross walk safely? What if the bus is late? What if another person at the stop wants to be friendly and talks to him and he does not respond? So many questions cross my mind. Is this worth it after all?
As I watch from a distance — not close enough to be seen — I pace nervously and wonder how anxious he might be. Does he feel I have given up on him? Does he understand the value of being independent? I wonder if he is doing this because he is so compliant and will try to appease his counselors and trainers. Does he realize the importance of this experience?
I gather strength and remind myself how far he has come and how ready he seems to take on this new challenge. I think of how he was talking about his siblings, Michelle and Jeremy, who are on a trip to New York. He sees their independence and it gives him joy; he’s happy that they’re going to see their friends and explore. In that joy, I see his confidence, and I see that Mark is feeling independent from his younger brother and sister.
Suddenly, as my mind wanders in the “what-if” moments, Bus #90 zooms by me and I realize I will not run fast enough to get close to the bus stop and see him enter. I feel it has come a little earlier than I expected, which is a good thing. But for Mark, that may not be so good. It is supposed to arrive at 8:10, for heaven’s sake!
The bus stops and from my view point, I can see him in his Adidas jacket entering the bus, with a lanyard identification holder that has a badge to indicate his disability. As I get closer, I can see another car driving behind the bus. It is a white car and I am comforted, thinking it is his counselor’s car following the bus as he travels independently to college.
I am not close enough to capture the moment on video. But this is a moment I want to share with Mark’s siblings when they return from New York. Perhaps, they’re wondering if leaving him behind was a good choice. Perhaps, Dad is at home wondering if Mark even left the house in time to make it to the bus.
As I walk back home, I think about him in the seat for the disabled. I hope that maybe his badge will identify him and people will not think this nice-looking, “abled” body is taking the wrong seat. I hope that maybe everyone he meets on this journey will be as understanding and wonderful as the team that has believed in his potential and competence; the team that has worked hard to train him and reassure us. I hope that maybe the world will be kinder and more appreciative that it has taken him years of training to take this very first step of independence that many take for granted.
To my family, I remind you that there’s no reason to wonder, worry, and question ourselves. Mark travelled independently from home to Montgomery College and made it on time. Here comes Bus #90, and our Mark B is leading the way, one bus ride at a time.