“Blue blue my world is blue,
Blue is my world now I’m without you.”
When Andre Popp wrote this song it was about lost love. I remember humming it in my head, laughing to myself (and maybe at myself) in a kind of crazy disbelief of my life when I was told my first baby boy had autism. I felt so sad in the beginning as the child I thought I had was gone and it was anger and love that made me fight for him. I describe it as a scene where I saw him as being miles away from me sitting in the darkness and I was tirelessly tossing him a bright white rope – a lifeline that I was waiting for him to grab hold of so I could pull him back to me. I’d toss and toss and hope for him to just catch it and hold it tight and every time he didn’t, I’d come up with a new way to throw it or to make it more attractive. Without Adam, the Adam I thought we had, our world was sad blue…and then one day, he caught the “rope” and with Tom and Logan’s help, I’ve been pulling him back ever since. And our world? Still blue…a beautiful bright blue even on days when autism makes things tough.
Today, while I think about our Adam and all the adults and kids I know like him, I think mostly of their families and my family. I think about how far from the norm our normal is and all the adjusting, modifying, sacrificing we do sometimes just to go to the store. I think about getting to the point where all you have left is love and it is the only thing that motivates you to get out of bed after a rough night with your kid(s). I think about the joy we feel for each other when the tiniest achievement is made by one of our children and I think about the times we’ve walked, run, fund-raised, hugged, laughed, cried and vented together. I think about the pain we have all buried deep inside just so that we can keep going for our autistic kids and our other kids and I look at the good people we all are and what fantastic parents we are and are still becoming and still I am at a loss for why our children are a part of this strange, brilliant, unique, fascinating yet complicated and often incomprehensible world of autism. What happened when we were having them? What happened after they were born? We most likely will never know what causes autism and honestly, for me, it’s ok. It’s all finally becoming ok. I have the most amazing son whose world is so different from mine yet, he shines every time he sings, draws, runs or skates around an arena so quickly, he looks like he’s flying. I have my awesome Logan whose joie de vivre and compassionate and patient personality fills in the spaces of the puzzle and he makes us whole. And then there is Tom who gives me the strength I need when I think I have nothing left. And because he is always there supporting me, pushing me and sometimes just sitting beside me holding my hand, I am never afraid. He takes care of us, loves us, fixes everything and makes it all better all the time. He provides for us and most of all finds ways to make our lives fun and normal and I truly believe he was meant for me as much as Adam and Logan were meant to be our sons.
Today I ask you all to remember those with autism but also remember their families, today, this week and every week. Don’t see us with pitiful eyes because we are too strong for your pity. What we need is your support. Don’t leave us alone, don’t mind your own business…we are your business and we need your help very often in the simplest of ways. Come and find out what tired really is and offer a few hours of respite to your neighbour who has a kid with autism. You won’t do anything wrong, you are able to handle it and you’ll be doing something so good for someone else, I promise you there will be no end to the warm and joyful feeling you’ll have inside just by giving parents an opportunity to take a break and breathe. If you like to draw or paint, spend half an hour with someone with autism and challenge yourself to find a way to reach them with your craft. Take them for a swim or to a movie or take them bowling. Sing with them, play music for them and show them you are interested in being a part of their world and invite them to be a part of yours. Imagine if you could not reach out to people socially and no one but your parents ever reached out to you. Befriend them. Parents can’t do it alone. Together, we can make a difference in the lives of our autistic children and their families.
Here’s to Adam, Logan, Tom, Grampa J, Granny A, Cameron, Quin, Shelley, Martin, Betty, Claude,Ange, Kate, Alyssa Scott, Abby, Chris, JoAnne, Matt and his brother and sisters, Yvonne, Paul, Carson, Rheanne, Rowan and his Grands, Amber,Bailey, Alice, Romano, Andrew, George, Maria, Costa, Anthony and their sister and brother, Lisa, Noah, Aiden, Benzie, Mark Simon and his brother and sisters, Lorna and son, Karlene and son,Petunia, Linda, BJ, Gabe, Liam Darren and to the many, many families I have connected with over the years. My light shines tonight for you. I love you all because you are my family and my world is bright blue because I know all of you.