Over the past several months I have shared so much about our lives in this space. We talk about parenting and advocating for our children. We talk about struggling to get through the day. We talk about different aspects of autism in a quest for greater understanding. We talk a lot about dynamics. The dynamic between myself and Grayson. The dynamic between Grayson and his brother Rowan. The dynamic between Grayson and his classmates. Between Grayson and the world. And that really just scratches the surface of the relationships in our life impacted by Grayson’s diagnosis. I have talked about things that are true. Things that are hard. Things that are almost too difficult to say, or to hear. And from somewhere inside of me that I did not know existed when I started this journey, I talk to you. I tell you all of the ups and downs of our life. You have come on this journey with us. And for that, I thank you.
Today my husband and I celebrate our 5 year wedding anniversary. Sometimes it feels impossible that 5 years have gone by. And sometimes it feels like we have lived 5 years since last Thursday. I think that ebb and flow is part of the marriage gig. A marriage takes on the life of all of the things happening around it. When I stood in front of my friends and family and vowed to love my husband forever; I had no idea what twists and turns would be in store for us. This 5 years of marriage has been filled with so many wonderful moments. We have experienced so many firsts together. We brought 2 amazing little boys into this world. We have seen each other through job changes. We have supported each other as we pursue additional education and training. We bought a home together. We navigate the ups and down of all life throws our way. We try our best to be what the other needs. Even in the moments when we have nothing left to give. And then 2 years ago we sat next to each other and heard the words “your son has autism spectrum disorder.” And in that moment, and in every moment since, we were changed. How could we not be?
Did you know that the divorce rate for parents of children with Autism Spectrum Disorder is 80%? That is shocking right? That is over 1.75 times higher than the national average of 45%. And as shocking as that number seems, I can tell you that I completely understand. I understand because I am in marriage with a child on the spectrum. I feel the weight of the diagnosis in our life, on our marriage. Every single day. We feel pushed and challenged and called to be stronger than we know how to be. We choose to put our children first and to fight every day to be better. And then we both go to work and try to give 100% to our jobs. To the careers that afford us the ability to purchase new items for our treatment space. To our employers who allow for leniency in our scheduling so that we can make it to appointments. And then we come home to a house that needs to be cleaned, laundry that needs to be folded, and children who need to be snuggled. And then after they are both tucked in, and after we have prepared for the next day, we have to dig deep inside of ourselves to find something left to give to each other.
When I met James I was nineteen years old. My life was the definition of simple. I was working part-time as a nanny for teenagers during my summer home from college. Which mostly meant that I was working full-time on my tan. I worked during the day and then spent the evenings swimming and basking in all of the wonderful Lake Geneva summer glory. And during that summer I met James. Life was easy and fun and we had absolutely no idea what lay ahead. The path that lead James and I to the life we have today was not straight. Our lives took us in different directions. And as life continued to twist and turn we found our way back to each other. When we reconnected after six years we were so different from the teenagers we once were. We understood more about love and loss. We understood more about being in a relationship. We understood more about life. Both James and I were married and divorced in our mid-twenties. I think it is important to share this (and I asked my hubby’s permission before outing him) because I want you to understand that I truly understand how difficult it is to join your life with someone. In my first marriage I joined my life with someone before I had any idea who I was alone. You see when I was younger I bought into the notion that I should be looking for a partner that was “my other half”. Someone to complete me. And the first partner I choose for myself fit the equation in my head. I was serious and he was goofy. I was rooted and he was up for adventure. I thought that by him being all of the things that I was not, we somehow made a whole. I learned the hard way that marriage is not about finding someone who completes you. It is not about being the other half of anything. Marriage is about two whole, complete people finding each other and living together as a pair. Because it takes two full people to complete a partnership. I realized that my earlier vision of love and relationships painted me as only half of a person. And, who wants to be half of a person?
In my life with James I have always looked at us as partners. Two whole, complete people who come together every single day to face whatever life throws our way. Being married is hard. Every single day. And that is just the truth. I sometimes refer to our journey with Grayson as a “pressure cooker” for our family. You take good people, in normal circumstances, with normal obstacles; and marriage is tough. You take those same good people and you throw in an element that stirs things up and adds pressure; and the challenges in a marriage take on a whole new life. There is so much pressure. So many reasons to shut down. So many opportunities to give up. So many moments to dig deep. But every day I wake up and I choose not to be the 80%. I choose to fight through the obstacles that we face. When I mess up I choose to look for ways to be better the next day. And sometimes, the next day, I mess up again. Sometimes I am under slept. Often times I am over worked. And most times I am just doing my best to get by. But marriage does not stand still. It moves with you. It follows where you lead. So even when you need a break it keeps going. Like a warm blanket. Or maybe a strait jacket depending on the day. Marriage is a decision I make every single day.
Is our marriage harder because of autism? Absolutely. I have seen firsthand why 80% of couples living with a child on the spectrum find it too difficult to make their marriage work. So I give myself permission to have moments of imperfection. I give my husband that same permission. I often give the example of marriage and autism being like marriage and a newborn; NOTHING positive is exchanged between couples after midnight when everyone is tired. So you come up with a rule: do not say anything. Just survive. Get through the difficult moment. Focus on the child. Focus on putting the fire out rather than throwing fuel on the flame. I break my own rule sometimes. And then in that moment I remember exactly why that rule exists. The rule exists to protect us. From ourselves and from each other. Because sometimes life gets real. Sometimes life gets hard. Sometimes we are beaten down, emotionally and physically. And the strongest marriages are the ones who learn to bear down, brace for impact, survive, and then move forward together. Happier. Better. More complete.
I choose marriage every single day. I choose my wonderful husband every single day. For a million reasons, big and small. I choose him. I am so lucky that he chooses me to.
One thought on “The Truth About Marriage and Autism”
This. This!!! What a perfect and beautiful post. Thanks Jess for pouring your heart out and sharing.