My first contact with a person with Downs Syndrome was when I was in high school at 17 years old. We lived near a L'arche community, and the founder's son had DS and was in grade 1. He rode our bus to school, and he always had a smile on his face, and was the sweetest little kid I'd ever seen. So, when a pilot program in our school became available to have grade 11 and 12 home-ec student work with younger grades as part of a child development program as part of our "parenting" segment of the course, I asked to work with him.
During our sessions, we sat on the floor together and worked on his ABC's and colors and counting to 10. It was simplistic, not something that even seemed like "work" even though he would get frustrated or sidetracked. It had an impact on me that changed me forever.
It was then that I knew I had a "calling" and wanted to work with people who had neurological differences. I felt comfortable, and happy when he and I worked together, and it was this event in my life that sparked my interest in developmental delays and disabilities. Little did I know it would become such a large part of my life as a mother today, 19 years later.
Unable to attend university for early childhood education specializing in developmental delays, due to money, I moved away from my home province to the big city of Toronto, and my life took a much different course.
But 6 years later, after some life changing events, like the sudden death of my 32 year old brother, getting divorced from someone I married for all the wrong reasons, and having just met my lifemate/soulmate, I found myself back in my home province and working with the L'arche community in their day work programs.
The Founder of L'arche remembered me and my working with his son, and offered me a job in the community working in the houses, cleaning them while the members were at their day programs. It introduced me to them as they came home from their jobs and day programs, and it was the slow connections and integration that brought me to eventually working with them in the arts and crafts workshop, and then in the day program for the members who needed more one on one care and attention. I became a personal care attendant and I worked side by side with people of all varying neurological differences from Downs, to Autism, to schizophrenia and bipolar issues and more. It was an amazing time for me, and taught me SO much.
It was during this "job" that I found myself. In a Christian based community, a non Christian-non believer, as a person with a great deal of doubt in religion and faith , I found peace and acceptance from these members of the L'arche community and my time there had a large part in me embracing Buddhism. A philosophy my soulmate and now Husband had introduced me to, and I had at that time began studying.
At L'arche, I discovered unconditional love and acceptance from those i worked with and cared for, they loved me for who I was, flaws and all, and I loved them for who they were, "flaws" and all.
I learned to see the beauty in the simplest of things, like stopping to let a caterpillar walk across our path before we moved on, or seeing the tears of joy in the eyes of a member who learned to snap her tongue and make a silly noise. The laughter and pure joy she displayed in that moment made me a little uncomfortable as it was in my first days there. I didn't know how to experience that with her, or how to just let go and be, and not worry about looking silly, or stupid. She didn't care, she was in the moment, jumping up and down and showing anybody who would listen that she could now snap her tongue. Though it was awkward for me,it was also beautiful to me. After that, over my time there, I learned more how to be in the now, and find the good in every moment, because they showed me how. I learned how to let go, if there was a bad moment, because the next moment could be what we wanted it to be. If we chose to make it be good, it just was, just because we wanted it to be.
They embraced me, and accepted me, and I became a friend, just as they embraced everyone who came there to share with them their simple but truly SIGNIFICANT lives.
I was greeted with smiles and hugs in the morning, and looked forward to what small seemingly insignificant things in their days would bring them a smile and a deep soulful laugh. I treasured that they wanted to share it with me. We made meals together, shared food together, did daily chores together, listened to music together, danced together, read together, or sometimes we just sat silently together. I'll never forget the walks up the "yuck road" in our rubber boots, and stopping to watch a bird chirp. It taught me patience and how to find fun or beauty in any place, and situation.
Taking nature walks and listening to the long stories of one older member who shared with me his deep faith and passion in God. Even for me, a non believer, felt the warmth and joy he felt in HIS god as he shared that with me. They were beautiful moments.
I learned acceptance in being different, having different opinions and views of the world, and learned that it was ok to find the commonalities in those different faiths and beliefs. Different faiths, that when you pull back the surface, and look at the deep underlying morals and values, are not really that different at all. The foundation of love, and kindness, and giving to others, and acceptance they all share allowed me to grow as a person, and embrace the beliefs that made me feel safest and warmest in Buddhism, and still appreciate the rituals and stories of their different faiths, and share with them their worship nights and services.
The things we often take for granted, or overlook in our lives because we are too busy seeking "significance" in our lives, rather then just being in the moment, are the things that made their days. The things that gives them joy and thankfulness for this day they've been given, and gives them the peace they go to bed with at night looking forward to what tomorrow will bring.
It has been over 10 years since I worked there. I left when I got pregnant with my daughter, due to safety concerns for my pregnancy since I worked one on one with some of the members who could become frustrated and need physical help to get through the moment to not be a physical danger to themselves or others.
I've never forgotten my time there, or how much it changed me, or shaped who I am as a mother and wife today. I think about my time there every day.
Then, I didn't know I would become a caregiver to my physically disabeled husband, and have to learn to balance being a wife and caregiver to a spouse. Something couples of our age don't have to endure, or think of until much later in life, or deal with WHILE raising a family. Nor did I know my future children would both have neurodiversities that would make parenting them more emotionally and physically harder. I didn't even know then that I have ADHD, and learning disabilities with asperger personality traits that were what made navigating the neurotypical world so hard for me at times.
But, it prepared me for the difficulties we come across now as a family living with disabilities. People often tell me they don't know how I do what I do on a daily basis, caring for my husband, doing most of the physical jobs being a home owner require, while raising two special needs kids that we homeschool. They say they'd of fallen apart by now, or ran away by now. I never know how to answer that when they say it, because it is not something I think about too much. I CHOOSE to have different view. I just go about my day, taking everything one thing at a time, and dealing with it, and moving on to the next moment, chosing to make it be a good one if we can. Sure I have bad days where I hide away in the workshop and have a good cry to release the stress, and frustration I feel at times. But I never give up. I am a problem solver and a survivor. I won't let or struggles won over or ability to choose happiness, no matter how hard it is.
I learned that if there are people in this world, like people with Downs Syndrome and other neurological struggles, and THEY can find a way to look beyond their struggles and find a way to embrace being different and experience pure joy in life, then I can too.
I can say, that a large part of who I am, and how I deal with our adversities today has a lot to do with having had this life experience working with these amazing people.
It is the kindness, and patience and acceptance I was given there, that allows me to be more patient as a mother and wife today. That allows me to find the smallest amount of good among the bad days, and that is what gets me through.
It is my faith in love, and working daily to let go of striving for significance in the world, and letting go of desiring materialistic things that keeps me grounded. It is knowing, because of my time there, that if there is a bad moment, we can just chose to deal with it, and move on, and let the next moment be a good one.
I shared this with you because It's National Down Syndrome Awareness Week, and it is at the front of my mind today.
If you have not had the blessing and pleasure to know a person with Down Syndrome personally, you have no idea what amazing people their differences make them.
They were some of the most honest, sweet, fun loving, happy , genuine people I have ever met, and I am a richer person for having known them.