by Elizabeth Sparling, BCBA
Sparling is a Board Certified Behaviour Analyst, has more than 20 years’ experience working with children, youth and adults with developmental disabilities. Elizabeth has a long history supporting and educating persons with developmental disabilities which was honored with the presentation of a QEII Diamond Jubilee medal for outstanding service as a Canadian citizen. She is the founding president of BC-ABA (British Columbia Association for Behavior Analysis), a recognized chapter of ABAI (Association for Behavior Analysis International).
As humans we seek belonging. Kinship with others is valued, that is the purpose of friendship – we seek others with shared interests, we congregate around a theme. Historically, our survival depended on the group and while we can live independent of one another for the most part, we are not wired for that lonely journey. Many individuals with developmental disabilities are excluded from their community; some are excluded from school, some are surrendered by their families; others are made unwelcome at local churches, community centers and social groups. My local news station has been running a story about a little boy with Down Syndrome, who was the only child in his class not invited to another child’s birthday party. His tribe of fellow classmates, with whom he’d spent the whole year, betrayed him at the end. This story is now making the rounds of social media… I don’t generally read the comment section of these stories, because its often heartbreaking and infuriating; and I figure I’ve had more than my share of these experiences as a parent of a son with Autism Spectrum Disorder and an intellectual disability.
Fear and vulnerability…these are common feelings experienced by parents of kids with special needs. I wish I could say that these feelings are infrequent or that they resolve as our children grow up, no longer do we need to worry about the “dreaded lack of birthday invitation”… not so, in many ways, our children are exposed to greater risk. In my job as a Behavior Analyst, I work with families to teach their kids adaptive behaviours so that they can be more independent and head out into the world, but its not without danger, and I do the same for my own son. Teaching skills that build independence puts our children at risk…we (professionals) refer to this as the “dignity of risk”, its necessary, but its scary for parents. My son is a huge music fan. He has an extensive knowledge of music trivia and a passion for rock, heavy metal and death metal. We attend concerts regularly in Vancouver, British Columbia, given the extent of my son’s disability; he is unable to travel alone although he has now reached the age of majority.
My son is not a child; he’s 20 years old. He’s also 6 foot 5″ tall and prefers to wear a black hoodie, a hat and sunglasses. At first appearances he looks “normal” (however you want to define that – that’s a whole other subject)… Last year, we attended the AC/DC concert and my first moment of pause (fear) occurred when we were going through security into the concert. My son was in his “attire”, I was stopped a bit further back (having my purse searched) and my son went ahead to go through the security. The gentleman at the door issued a command in a sharp voice to him, he did not respond, he just stood there. The security guard moved forward, my son stepped back, I then abandoned my purse to tell the security guard he had ASD, so if he could just ask him to do what he needed done in a calm, non-confrontational way, he’d comply. The guard said, “oh, you’re his mom, that’s fine” and didn’t proceed with a security check… I gathered my purse, we proceeded forward, and the door lady said: “your son looks intimidating”. My heart fell as he’s really this giant kid, well, he’s my kid, he’s an adult, but what if they knew we’d packed his stuffed animals for the trip…
Inside the venue following the opening act, the young man behind us (who had had a few too many drinks) began to pick on my son. He was able to select everything that set him aside from others and labelled him a “loser” or a “retard”… my son just hunkered down and turned away. The young man was with his friends and I experienced a moment of fear and vulnerability… would others help us if this escalates?? We’ve been to A LOT of concerts (more than 50)… I have never experienced any problems whatsoever from other concert goers… to me there’s this unspoken rule: “we’re a tribe”. No matter where we’re from, what we do, what we look like, who we are – in that moment we are fans – we are united… I did finally stand up, turn around and address him. He did have the wherewithal to be chagrined when I said that my son has a developmental disability… I wish I could say I did it in a calm, cool, collected, matter of fact way – but I didn’t – I did it with tears in my eyes and a crack in my voice. He’d betrayed the safety of the tribe.
In the morning leaving the hotel, a young woman held the door open for us… my son went through ahead of me on a mission to get to subway, I followed him through and said “thanks”. The young woman said: “you’re welcome” loudly, then said it again even louder. I stopped and turned around and said: “I thanked you”… she said, yeah, but he didn’t. I said: “you mean my autistic, mentally challenged son who’s outside of his routine and on a mission to get to the airport. No, he didn’t thank you for holding the door, but I hope that it doesn’t ruin your day too much to know that you did something good for a person who is stressed out, even though that person didn’t thank you” and I turned to go…. (Yeah – note to self we need to practice courtesy statements)
Inclusion or membership in the tribe, how do we foster inclusion and insure membership in the tribe? We are still working towards acceptance and until individuals with developmental disabilities are truly a part of community, we will need to continue to consider the risk of everyday situations. Dignity of risk… how much, how often, how do we let our kids who are vulnerable go out into the world? How do we prepare them for all the people they will meet and keep them safe? How do we let go?