As researchers we are required to examine our personal justifications, bias and motives for our research. Below are some of my thoughts as I “face inward”…
EXITING THE BORDERLANDS
I think a lot about the borderlands.
Last person selected for the team
There by the grace of God go I
The borderlands are silent…
The borderlands are lonely. Nobody should dwell in the borderlands – it is not a habitat for humans.
I am the mother of a 22-year-old son with Autism Spectrum Disorder and comorbid diagnoses of anxiety disorder and mild intellectual disability (IQ below 70). His name is Robert. He is amazing! And not in the sense of he’s amazing because he’s done so many of the things that “typical” people do…, the language of normalization pushes
It diminishes. What is so great about normal or average, or above average for that matter? You can still be an a**hole if you’re above average. But I know, average or above average opens more doors. Average or above average, gives you a place in the centre, away from the borderlands.
When I meet families of newly diagnosed children and they find out I’m a parent too, they ask: “how is your son now?” He is amazing! I tell them that Robert graduated at age 18 with a provincial Dogwood certificate, indicating he had met the same learning outcomes as his peers. He is Amazing! He is currently completing a certificate in Digital Communications at our local college, one course at a time, so that a 1-year certificate has become a 5-year journey, he will graduate next year. He is amazing! He maintains his own apartment space. Why do I tell these stories of normalized standards? Its what they want to hear. Its what they hope for too. Why? Why can’t he simply be amazing, hand flapping, vocal stimming…
He has a talent for dates, he can remember and recall enormous amounts of information that is stored by dates. His love of dates is also a fabulous party trick. If you tell him your birthday, he can tell you the day of the week you were born on and the day of the week it will fall on in the future if you give him a year. He will remember the date of your birthday forever. This is a double edged sword…in elementary school, classroom teachers would post the dates of birthdays on the wall. I don’t remember how many times I told my son that so-and so’s mom doesn’t let them have a birthday party. I’m not sure if he believed me, but at the time he seemed to accept this. I wonder if he ever thought I was lying to him, or if he simply wondered why they didn’t? Either way, if he did, he never asked, and I could not bring myself to tell him the truth.
Robert has travelled nationally and internationally with me, to see things of interest to him, from paintings in the Louvre, when he was very interested in art and artists, to a visit to Washington, DC the year his interests included US presidents and first ladies. I have dubbed this “autism goes on vacation”; because, Robert selected the trips and the activities and the sites we visited. To my delight, I have sometimes found myself in locations I never would have chosen myself, such as the Tiffany lamp museum, known as the Morse Museum in Orlando, Florida, that Robert heard about on Storage Wars. In addition to travel, he has experienced a multitude of concerts (as have I, alongside of him), as he has an intense interest in music that has spanned more than 17 years. As Robert’s mother, I have shared many experiences with my son, and I have often wondered about his perception of experiences in the various situations in which we have found ourselves over the years. I know without a doubt that they are different from mine. I will never be head banging, devil fingered fan of Butcher Babies or Gwar!
In preparation for his transition to adult services, we finished our basement into a suite so that he could learn the routines associated with caring for his own space and greater independence. We completed a long-term planning process with him that reflected his dreams as best as possible. It’s challenging for Robert to communicate his dreams in a manner that would be typical for someone sharing stories and hopes, as engaging in conversation with Robert is difficult, he scores at the 1st percentile on language assessments. As a result of Robert’s difficulties in communicating, I have tried, as Robert’s mother, to put myself in his shoes and plan for a path that provides the greatest possible number of opportunities, however, this is based on my best guess and intentions.
It has not been until the last few months, as I began to reframe my thinking about identity and experience, that I realized that Robert has been sharing his dreams and hopes all along; however, I have disregarded many of them, as they come out idiosyncratically. Robert shares his dreams as scenarios that sound like pretend talk, talk in which he says what he would say or do, and what the other person might say or do in response. Talk that is delivered often without preamble or context, so that I often found myself smiling and nodding while uttering some platitude… “that sounds great buddy”. By listening more deeply, I am realizing that these made up stories reflect his desires.
Throughout Robert’s transition process, I have tried my best to incorporate his wishes and desires; however, as I hear some of his more recent tales, I am less sure that I am going in the direction that he would choose if he had the necessary skills, supports, and/or opportunities available. As I listen more closely, I wonder if I am hindering him as a parent; I may be narrowing his opportunities. How then can I help him find ways to compose his stories to live by that are ones that he wants to live out, rather than fitting him into my narrative? How can I create situations for the many other individuals with developmental disabilities who are also challenged to share their dreams? I have been following my best guess as to what he wants, and I have tried to shape a future for my son that maximizes his opportunities, but I am also realizing it’s based on what I want for him… not necessarily those opportunities he would choose for himself. This has raised many tensions within me, alongside great sadness. Have I inadvertently perpetuated the diminishment of his voice and choice?
I worry that perhaps if I’d listened more deeply early on to his stories that seemed pretend, he might be closer to realizing the situations he is imagining for himself. I feel that I have missed many opportunities to support his learning, to value his experiences and to shape a future that aligns with his desires. I hope that, as we move forward, my realization will help me to come alongside of him so that I can support the re-storying of his life. Robert is a youth in transition to adulthood, and this decade of time should help establish the next part of his life: this decade is the decade of dreaming and learning.
As a parent, I want my son to compose the life that he wants to live; however, there seem to be multiple constraints related to societal, cultural, and institutional narratives that interfere with his autonomy, keeping him in the borderlands. These institutional narratives tell us that, as parents, we should be happy and grateful to receive any funding or supports for our young adults. Accommodations and supports for individuals with developmental disabilities remain reactive, more often than proactive, without crisis, there is no care. Sometimes we, as parents are simply tired, we have reached advocacy exhaustion, confronted daily by attitudinal, physical, and educational barriers; an overwhelming weariness grows out of the years of being within a system that is often non-responsive and unsupportive. I wonder how many of us are in the borderlands because we have simply given up…worn down by the fight to cross the border?
It sometimes seems overwhelming when I think about my son. There is a paradox associated with negotiating the parenthood of a child with a disability that shifts me from nurturer to advocate, whereby in one breath I declare that “I love you more than anything”, while in the next, “I wish you did not have an impairment”. But don’t worry, society tells me that “God doesn’t give you more than you can handle” and “he’s so lucky to have you as his mom”. Self-advocates tell me that to wish that he did not have autism is to wish that he had not been born. I tell other parents its okay to grieve, but is it? I am required to push up against society’s perception of my son as a person with a disability, who at worst does not have a place, but more often is situated in the borderland.
When I continue to think of borderlands, I am drawn to the Leo Lionni story Fish is Fish, in which a minnow and a tadpole are friends. The tadpole grows legs and goes onto the land and then comes back to tell the fish about all the wonders he has seen. The fish then tries to follow the frog onto the land because he imagines the wonders the frog has described as better than his water habitat. What if my son is a tadpole, becoming a frog in this transition process, to emerge into the wonders of the world? However, he’s not recognized as knowing, and he isn’t given the chance to emerge, so he’s kept in the safety of the shallow water’s edge instead… neither fish nor frog, neither fully in nor fully out of our society.
I offer this metaphor as a method of grasping inchoate meaning. I want this transition decade to be transformational. I want my son to walk in the bright sunlight of life on land, to be seen, to be included, to be the best version of himself, created through re-storying his lived experience, learning, stretching, and growing in confidence to leave the shallows.
While we are living in the midst of our story of transition, I am far from realizing the denouement of the transition process in relation to my son. I know my experience is congruent with parents and youth with developmental disabilities.
Change is needed.
While I worry, I am bolstered for a moment when I remind myself that the process is not fleeting, it is a marathon, not a sprint: I won’t “miss my chance”. I hope that as I learn to bring the voice of my son with developmental disabilities forward, that his knowledge will be recognized, his gifts celebrated, and that he will finally have a place in the sun.