It is no secret that I have a sour taste in my mouth when it comes to puberty especially when it is combined with autism. The autism I get because we’ve lived with it for 13 years … its the hormones and the attitude and the defiance that comes along with a youngster entering adulthood presents to you when trying to define and assert himself COMBINED with the challenges of autism that I absolutely despise. Don’t get me wrong, I love my children but damn it if there are days when I just want to ram my head into a wall when the teen stink rears it’s ugly head in this house. Puberty hit with Adam HARD and if there was a year this family was going to go belly up in every sense, 2014 was it! But, we survived. Tom and I (as much as I could anyway) kept our heads down, worked the business with the some of the most “interesting” clients. No amount of good sense made sense to them and keeping our young business alive was an uphill battle. Add to that a son with autism in puberty who was angry more than not and a younger son just tugging at our heart strings as he stepped up in any way he could to help us deal with his brother. 2014 was the year things could have gone either way. We could have given up on our livelihood or we could have given up on Adam but we didn’t. They were both our babies and we couldn’t walk away from a business or a kid we believed in. We just kept going; working the business and working our hardest to put the right things in place to save Adam from himself and damn it, we did it!
2015 started off with us getting some wonderful clients who really understood what we could do to make their lives better. It was like the heavens opened up and sent us people who needed our advice and who were willing to listen and learn and realize that we had their best interest at heart. Thank you God, thank you universe, thank you good fortune. (how Alanis Morissette of me). Then, if that wasn’t uplifting enough, at the end of January in the heart of winter we along with Tom’s sister Suzanne, his brother Martin and His wife Christa and their little ones, were off to North Bay to see Adam who made it to the Special Olympic Winter Provincial games in spite of the puberty fiasco of 2014. You have to appreciate that we were so unable to get through to Adam, that getting him to these games was my benchmark, my taste of victory for him and a sign of his own ability to get out of the funk he was in. I didn’t give a shit if he placed. I just wanted to get him to North Bay, have him compete without incident and have an amazing experience and I just wasn’t sure if he or we could turn things around for him fast enough. Well wouldn’t you know the little bugger (or rather the 6 ft bugger) had a medal sweep. Four events, four medals – 1 gold and 3 silver. Watching him on the podium, watching him having fun at the loudest ever opening and closing ceremonies, watching him dance and rock out to the live band at the after party, eat with his team mates and learn that he shared a room peacefully without incident with his team mate and listen to his coaches without defiance was the first indication that we had made it. We and he survived the bullshit combination of puberty and autism. The plan was in place, the respite family couldn’t be more perfect, the treatment was working and he was beginning to understand that we would never be intimidated by his behavior nor would we allow disrespect in our home. He knew we loved him too much to let him self destruct and we could see that he was beginning to understand that while we were all in favour of him becoming his own person, he had to do so while learning to respect authority and having consideration for others.
And then there was Tom. You never know why you meet a person until you see how they are in the most trying of times. It is in these times that you realize that just maybe there is a divine plan for your life and the person you are with, is supposed to be in your life. Tom is an old school man. You know, the ones who provide, protect and fix the broken stuff. The ones who make you feel that everything is going to be alright even when he barely believes it himself. The one who makes you feel safe. Tom had the hardest business year mostly because of the distraction that was Adam in 2014 but he never whined about it and he never softened or wilted under pressure. He got up every day, kissed me good morning, walked the dog and helped me get the boys to school (mornings were particularly challenging with Adam who did NOT want to go to school), dressed and went to work, head held high even on the days he wanted to just crumble and curl up in bed. He mostly worked alone as he gave me months of time off from the office to sort out the Adam stuff. He came home to help with dinner and he listened to me bitch and complain about the obstacles in my way. He tried to keep me calm (which is NOT easy) and pointed out anything positive he could find in the worst of “an Adam situation”. He made Logan’s life as uplifting and normal as possible in a tumultuous year and he implicitly trusted whatever I did to try to get Adam on the right path. Most of all, even on the days I wouldn’t give him the courtesy of a smile, he tried to make our lives fun. In a situation where many people would just walk away, Tom stood strong and he went to work and he paid the bills and made sure whatever needed to happen with Adam was financially handled. He may not be the mushiest of men, nor the most vocal when it comes to affairs of the heart but his love pours out in his role as husband and father and to me that is what men are supposed to be – solid, fearless even when they are scared, resilient and reliable. Now that I think about it, it’s kinda sexy too.
This month, and more importantly this week was golden for Tom and therefore for me as well. God was good, the universe was set up in the right way and most of all, the hard, hard work and dedication to giving people the service and care they deserve yielded the results we had hoped for. Integrity, honesty and fairness paid off and I am happy that our boys were watching as things on the business front unfolded. This was a good week. This was a week that stood on a foundation built on a love I never knew I would experience, persistence, faith and 4 souls who refused to quit. We had help from a very special family along the way, and the support of our immediate family and close friends as well and as I write this I realize just how truly blessed we are. I suppose in the worst of times, blessings come in all forms and if you aren’t careful, you could miss them as it is easy to be blinded by the darkness of hardship. Life is short and it is a roller coaster and for what it’s worth, I’d do it all again with the same triumphs and problems.
My hope for you is that you live your life in love and in hope and with faith that being at the lowest of lows only means that the only way to go from there is up. Have your partner’s back knowing that facing hardship together will help you conquer it. Surround yourself with people you can really count on and be comfortable with the fact that it will usually be only a few. Rid yourselves of the people and things and places that weigh you down and learn from every experience then extend yourself to someone in need. To think that this is the last of our hard times would be naive. It IS life, after all! But, we are in a long awaited, well deserved and beautiful oasis right now. My soul is soaring. My heart is full …overflowing actually, with happiness and long awaited peace after a difficult year. I know myself better now and my head is clear and it is with great joy I embrace the opportunity my family has to really…finally … breathe.
“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.