A Story of Friendship

Thank you for the opportunity to share ‘our story’. My name is Aimee, although to most teenagers in our community I am known as Dallen’s mom, which is an honor that I cherish. Sadly our story is one that is not unique to the thousands of children, youth and adults with developmental disabilities, however, I am hopeful that it may inspire you to think differently and creatively about ways that ‘our’ babes can have the same opportunities as others living alongside our neighbors; within our schools, universities, places of work and communities.
 
My son Dallen is 17 years old and is currently in grade 12. As any parent, I wanted so desperately for my son to have friends and be liked by others for exactly who he is and what he has to offer to the world. Dallen has lots of medical labels that do not define him, including CP (although he can walk), autism, pica, seizure disorder, and he cannot speak very many words. At school, because of his challenges with communication, he was also identified as regularly having big emotional and behavioral outbursts which reinforced a ‘scary image’ of who he looked to be among his peers. Friendships in school and the ways in which Dallen was included were very important elements for me in his school experience. Difference was already noted in his responses and appearance, so it was imperative that the other students were able to get to know the real ‘Dallen’.
 
To ensure accountability in BC for students with a developmental disability an Individual Education Plan (IEP) is created. This is a legal document that outlines a plan and strategies for a student’s education. Dallen’s IEP goals were formulated to set objectives in establishing friendships to enable belonging and inclusion. Reports from the school shared glowing updates that Dallen was a well-liked teen who was included in classrooms with other youth and was a part of the richness our high school had to offer. I was excited by the stories they shared, and decided to attend the school to see exactly what their stories of friendship, belonging and inclusion looked like. The day I attended the school was the day that I realized how friendship, belonging, participation and inclusion can mean different things to different people. I saw Dallen during academic classes, at a table in the back corner with his Educational Assistant (EA) – and none of his peers at his table. When the teacher asked all the youth to come to the front of the class for hands-on learning, Dallen did not go, nor was it realized that he was still sitting at the table in the back of the classroom. When we walked the hallways during breaks, no one said hi to Dallen, it was like he was a nameless person that no one even noticed. He ate his lunch before the other students, with others who had a disability. He was segregated and supported in ways that silently shared to his student body, that he was different and not the same as them.
 
My own definition inspires me to see belonging as something one feels based on the richness of their experiences both in doing things a person loves and sharing it with people who care. Inclusion is something that I see happening in the ways where people are put into situations with a hope that one will belong, yet true inclusion cannot occur, unless it is something felt within a person’s heart. As a mom I have struggled with the notion of inclusion, and worry that in my community this is a word primarily used for people with developmental disabilities with a ‘well-meaning’ intention to put people places where belonging will just emerge. I have always found it interesting how there seems to be a strong push to measure inclusion. I am so curious about how this occurs, especially when the word inclusion speaks to something felt uniquely by each individual. In saying this, inclusion is difficult to measure on a strategic, person-centered plan and as a measurable outcome. It has been said one can be in a crowded room, surrounded by people and still feel lonely.
 
Dallen’s story transpired from all of these conflicts bounded by what was not happening, how my son’s disability was seen and supported, and how I/we felt very challenged living within the different ideas of what the words friendship, belonging and inclusion meant to the people in place to help my son be an equal and real member of his student body community. I decided that in order to help my son build real friendships, I needed to act immediately and plan in a way that was intentional, accommodating and a tad radical. I was able to use some of Dallen’s support dollars to hire a person that could work towards my hopes to assist my son in building friendships. I was very adamant that this person needed to be someone close to his own age, as how could a person even 5 years older be able to work within his school to assist him in building relationships.
 
So I began my quest to find a person that matched what I was looking for; someone who liked my son, had an interest in social justice, someone who had lots of friends, and a person who may be in a place to benefit being inspired by my son … to create hope and meaning within their own life. I decided to look in the yearbook where I came across a picture of Laura, who shared that she would like “to work with people who have special needs”. I also knew she was one the teens who really liked Dallen and that she was struggling in her own life in finding out who she was in the world. It was a perfect match! When I approached Laura’s dad about how to contact her in regards to a potential work opportunity he was very grateful because she was wavering in her own life, and needed a positive influence and a lucky opportunity. I left my contact information and Laura called me almost immediately, wanting to learn more about how she could work with Dallen. She shared how much she liked him, and how difficult it was to have a friendship with him at school because his supports seemed to support him as if they were ‘armed guards’ protecting him.
 
I hired her and gave her a job description; that as she shared sounded like the best job ever! It was her job to take Dallen into her social circles, and without naming what she was doing, help them to see all the amazing qualities Dallen holds as a person. She was also charged with helping Dallen to experience typical teenage interactions and experiences, which would enable him to grow and aspire into the person he wanted to be. I knew this could not happen through another person who was not the same age as what I was building had to be authentic and real. I also knew Laura had no experience and no assumptions of disability or ability …… just a great amount of curiosity, which was great for me as a mom, as I could inspire and mentor while working to change the perception of disability one person at a time.
 
Laura started working with Dallen in mid-June, 2009. The transformation within my son was almost immediate and absolutely incredible. Dallen went from having family and paid supports in his life to having friends. Laura set Dallen up a Facebook page, which now hosts over 300 friends. Our home went from my children and I to having all of Dallen’s friends over, to chat, listen to music, play ball and eat. On the days that Dallen’s friends were to come, Dallen would sit for hours by the window, watching and waiting and then excitedly greeting them all at the door.
 
Summer 2009 pushed the doors wide open, and inspired deep and connected reciprocal relationships between Dallen and his friends that for once did not include me. That summer, I spent time with the teens, when given permission, talking to them about the sad history of the disability movement, stimulating conversations about the differences between their school experiences and Dallen’s. Teens would share comments with me like “I never knew Dallen was such a cool person”, “knowing Dallen has changed me forever as a person” and “I cannot believe all the things he can do”.  Dallen went with his friends everywhere, and they would just naturally accommodate his unique needs. One example is when he went to the river, he wore a life jacket because he cannot swim, and all his friends talked about how cool he was, and a friend even wore one too. This summer was the beginning of Dallen’s strong network of friends, who began to challenge me as a mom on ways in which I parented him. At first I was taken back and not prepared to be challenged, and then I realized how easy it is to get caught up trying to ‘protect’ my son from a world that could harm him because of his vulnerabilities. I learned that to help my son grow, I needed to take chances to trust that together we could modify things to enable Dallen to be successful.

When school started we were so very excited to have Dallen attend all classes with his peers, especially since I had intentionally assisted in creating very solid networks of friends around him. The plan was that he would hang out with his friends at lunch, and even take the bus to and from school. His friends decided that it would be so cool to take Dallen on the first day of school before class started to reminisce about summer holidays. In our school district students with special needs are not able to attend class on the first day, so it was a golden opportunity to offer Dallen something that other students enjoyed. After dropping off the kids, I walked in the house to the phone ringing, and Laura on the other end of the phone telling me in tears that “they had taken him”, and she was unable to share the person’s name. As any parent would be, I was worried, someone had taken my son, before school hours, and I did know who had him, nor why they had him and no one had even called me to share any details. As we all have learned (in my case the hard way), there are times when we are really angry that we just need to bite our tongues until we organize our emotions, thoughts and words. This was one of those times, I was steaming mad that someone had taken my son before school began, and no one phoned me with an explanation.
 
To make a long story short, Dallen’s friends were extremely angry and upset, more vocal than I given their age. We arranged for a debriefing session at our home following the school day. The school explained their stance that because Dallen has a developmental disability, he is seen through their eyes as a liability and as a result cannot be on school grounds without a school district employee. The school’s response hurt me deeply, evoked anger and put me in a place to deeply reflect on the subject of inclusion, and what it means to me as a person. I saw the challenge of inclusion and how it means different things to different people and its success is something that is so dependent on another’s perception, beliefs and values. 
 
The debriefing session with the teens intensified our quest to find very intentional ways of inspiring others to understand our hopes to enable Dallen to live, grow and play amongst his peers. We decided to film Dallen’s school year to record the differences in his school experience through the eyes of his friends. This would also act as a way for the teens to debrief their thoughts, feelings and emotions of where they saw contradictions and celebrations in how he was supported. This beautiful project gave the kids an outlet and brought us closer to discuss, analyze and think critically about social justice issues people with developmental disabilities experience.
 
There was a great amount of resistance at the school level as Dallen was seen as needing to be cared for and was supported in a ways that smothered him. There was a silent notion of duty from the school, to keep him safe, which contradicted his freedom to have friends. As a mom I struggled when people in the system critiqued my choices as a parent, as if I was putting my son at risk by allowing him to be supported by his friends. I know my son better than anyone, and when he is with his friends he is smiling, high on life and free to be himself. When he is restricted and guarded like a prisoner to conform to silly rules and rigid routine that doesn’t fit for him his responses are anger, sadness and opposition – and who wouldn’t respond that way?
 
The really amazing component is that the students are keeping the school accountable to ensuring Dallen’s experiences are, as they would say “legit”, by texting me  pictures if he doing something that is not okay, like stacking chairs or recycling. When silly requests have been made that contradict a typical experience, Dallen’s friends name it and call the support staff on it. Today Dallen is safer at school because he has friends who have his back – they are his safeguards, acting to ensure he treated with dignity and respect. 
 
In conclusion, today Dallen has more friends than I count. His facebook wall reflects messages of real friendship. Dallen’s friends have become part of our extended family and they share with me often how rich their lives are because Dallen is a part of it. When I go out in community people who I don’t even know come up to us and talk to Dallen. My son went from missing a very important component in his life, which are friends, to having more that I can name, and as any person – this has and continues to make his life, a life!