Left Behind: Our Journey to AAUD

By Melodie Muir, Founder & Vice-Chair

When you first realize your child is going to be born with a disability, if you are anything like me,

you are immediately thrown into a world of unknowns.

I’m a planner. A big one. And when I learned I was pregnant with each of my kids, I started to picture them – would they have my curls and their dad’s red hair? What would their first word be? What would their first steps be like?

When I was 17 weeks pregnant with my third child, I was told that he had Down syndrome and I realized I had no idea what his future would look like. It became this abstract thing that I couldn’t picture and all I knew was that I was being referred to specialists and we were discussing complications and it … it was terrifying.

Matthew, pictured at 5 and a half months, surrounded by wires and tubes in a hospital bed following open heart surgery while his mom, Melodie, watches him from his bed side.

 I cannot easily convey the devastation that follows a special needs diagnosis. The dreams you have for your child seem to shatter. And my doctor, who I had known since I was 16, sent my husband and I to the local Tim Horton’s. He told us to grab a coffee, sit down, and observe. When we arrived, we noticed that one of the employees was a man with Down syndrome. He was bussing tables and chatting with customers and doing it all with so much joy. That future that I couldn’t picture for my son started to become a bit clearer. I could see him growing up and having a job like this one day that he absolutely loved. And I could see him loving music and having his dad’s red hair and, while I was still terrified, I finally began to plan again. 

Once Matthew was born, we were immediately embraced by the special needs community. I know that terminology is now considered outdated, but 15 years ago that’s what we called ourselves. We were fierce, passionate, and determined and our children were at the centre of those emotions.  When times got tough, there was always someone there who understood. And I was surrounded by a massive group of people who were planning right alongside me. We walked into the unknowns together, armed ourselves with information, did all of the research we could on how to support our children, and were helped along the way by the families who had walked this path before us. We were prepared for the challenges – therapy, frustrations, advocacy, and tears – all in the name of doing everything we could for our children. And we belonged. Matthew belonged. The children around him were just like him and we had found our community … and then we were left behind.

A young Matthew walking alone along a bridge, away from the camera.

Matthew was about six years old when I realized we were falling behind the group. I want to point out that as a parent of a child with special needs, I was not naïve to the fact that my child would be behind many of the other kids his age. I knew that he would likely be in classrooms with children who were learning at faster rates than he was, and it would take more time for him to hit certain milestones. He was 4 when he began walking, 6 when we transitioned to using an iPad for his speech and began writing his name with assistance this past year. But until Matthew was 6 years old, I did not realize that he was behind other children with similar diagnoses too.

We had registered Matthew for a special need’s soccer league.  We knew it would be a struggle for him to understand the concept of soccer but figured that all of the other kids would be struggling alongside him, after all, this was a space designed specifically for our community. After a few sessions the other children were doing drills and scoring goals and my adorable little man was on the sidelines licking a ball and rolling around in the grass being silly. That’s not a typo, yes, I said licking not kicking.  I’m not saying there is anything wrong with that.  He was adorable and doing things in his own time and his own way but if I had to find a moment where I started to realize we were falling behind the group, that was it. It is incredibly difficult to realize that you don’t belong in the spaces that are supposed to be designed specifically for you. One of those soccer moments was photographed and actually became the inspiration for our name All Around & Upside Down. A place where fun, silly and different are not just embraced but celebrated. 

 Falling behind and losing your community doesn’t happen overnight. I mean, our children were so similar just a few years ago but those other children started to develop more and more skills and we were stuck. We went from participating within this community to watching everyone else from the sidelines. As difficult as receiving that initial diagnosis was, it couldn’t compare to the unbelievable heartbreak that occurred when I realized that even other children with the same diagnosis were developing leagues faster than my child. This realization broke my heart and made me realize no matter how hard we tried or how hard we worked, we didn’t seem to belong anywhere, and this just continued to get worse as we grew older.

Matthew participating in a community program. Sitting in his wheelchair, he is holding a parachute that is waving around him and smiling.

 Eventually, Matthew was a full head taller than the other children in his community programs. His interests matched the 6-year-old’s around him but his 13 year old body did not. Most of these children were afraid of him. He’d approach them with a smile and his hand out for a high five and they’d blink back in fear. He was bigger and louder; his movements could be jerky, and he didn’t interact with them in a way that they understood. At 15, he went from being the same age as the other participants to the same age as the staff members. Any programs designed for 15-year-olds, whether specifically meant to be for teens with special needs or not, required a skill level and independence that Matthew could not meet. We went from watching on the sidelines to being turned away at the door. All of our supports were gone. He’d aged out of every program that fit him and could not qualify for any others. We were turned down for programming more times than I care to count. Our community dwindled further until it felt like we were completely alone. With no programming options left, we became further and further isolated in our home. We knew a few other families who were in the same boat, but none of us knew where to turn or how to come together. When we would reach out to organizations to explain the gap, the group being overlooked and ignored, we would be continually told that that was not their area and sent somewhere else. Rinse and repeat. Until we had become so frustrated that we began to accept the fact that we just did not belong. It was during the height of this frustration and the beginning of this acceptance that we decided that if no one else would welcome us into their community, we would make our own. That was when All Around & Upside Down was born. And that is why our primary goal will always remain crystal clear: to create a community for everyone and to ensure that no one feels alone, isolated, or that they do not belong.