Marriage and Autism: Finding Love in the Chaos

I watched a movie about a year ago called Jack of the Red of Hearts and there was one scene in the movie that hit me so hard that I find appropriate to open this blog post with. In the scene there was a husband and a wife having a heated discussion about how to proceed with their autistic child’s care and the husband said something so profound that resonated with me and often runs through my mind whenever there is an, “autism disagreement” between my husband and I and here is what he said, “I don’t want to feel like we are co workers in a mental institution anymore”.

I don’t know if its because of working in the capacity that i have as an inpatient mental health technician for the past thirteen years or because sometimes it really does feel that way but this line hit me so hard that I had to pause the movie and walk away to collect myself because well, he was right. It does feel that way and not just sometimes, most of the time, And there is always this tug and pull between “he doesn’t get it” and the “why is she acting so crazy” conversations we all have had with our closest friends (come on guys you know you have had the conversation). and the expressions that i have heard in almost every conversation is generally something like this, “he is never home so he doesn’t know whats going on and he still tries to tell me what to do. he just doesn’t get it.” and on the other hand her male counterpart is thinking, “I have to work all of these hours just to keep the therapies going and i come home to a messy house and chaos! And whenever I try to help she gets upset at me and gets all crazy. I mean really what does she do all day?”

Ok Y’all, I want to lay this out on the table here.  First, lets tackle the emotions in all of this, because ladies and gents, this is what motivates us to do whatever we do. Ladies first lets get this out…

Dear Husbands, we are tired, we are physically watching our children suffer, because we are home, the brunt of the housework is on us as our children continue to break things and for many of us pee on things. It is our primary responsibility to keep our children safe and to know what they are doing at every moment. We are running our kids back and forth to therapies that may be helping but then again they may not be and we are left to gauge that. During ABA there are strangers in our home during our most intimate moments with our children. As we eat with our children without you a therapist is helping to script our conversations and sits not eating as we eat in front of them. when our children misbehave they are watching how we react and when we lose our patience (as all parents do from time to time) they are standing there judging. We are not allowed break down time and when you get home, I seem distant because I’m done with people. I just want to put my sweat pants on and watch Shameless or some stupid ADULT show because my day has been filled with stress and emotions I had to suppress. I know you get upset when I go out for coffee with a friend, you may think that I have it made, or that I am “taking advantage of not working” but really, that coffee break is usually spent talking to another autism mom. That short coffee break is my saving grace, my one breath of air in my ever sinking afternoon.

Now, of course I am not male but ladies I have listened and I have thought long and hard and if I had to compose a letter to Us wives from our husbands this is how I imagine it would go…

Dear wife, I am tired. I get up every morning and head off to a job that I’m not so particulary fond of when I would much rather be home. When I am at work I am always thinking about home and wonder what is going on. I get jealous of you when you go out for coffee with a friend because I don’t get any time to go out with my friends because after being out at work for so many hours a week I feel guilty for leaving you alone again even if I don’t say it. It seems like with every bill I pay two more come in the mail and I cant seem to get us ahead financially and that makes me frustrated. When i get home to a messy house and a stressed out wife I get even more frustrated because I have tried to “fix” this and I realized that “fixing” this is not really an option. and lastly whenever I try to intervene with a behavior or to help you with something pertaining to our child’s care you tell me that, “I don’t know what I’m doing because i was not here with therapy all day so I don’t know how to do it right” and that talk makes me feel angry and like an outcast. and Last but not least, I want my wife back. Ever since autism hit you seem so distant and our times of intimacy has turned into a chore leaving me feeling like I have no place in our home beyond keeping a roof over everyone’s head. you always seem so preoccupied.

There are so many dynamics in a marriage when Autism is thrown into the mix and i think in the course of all the emotions and lost personal time there is a loss of connection. I think its important that we take note and be more forgiving of one another. Men Please note, that if the house is in the same condition as you had left it she worked her butt off to keep it that way. And women, when your husband wants to stay in bed on a Saturday until noon, maybe we should let him without getting angry because darn it he has worked hard and is sifting through emotions we cant understand. (this does not mean husbands that when you get out of bed at noon on Saturday and look at your wife managing children with her messy hair and sweat pants that you have the right to get up and starting telling her what you don’t like about any given situation because she is maintaining for you to rest when you get up thank her and ask where you can help).

Date nights are VITAL even if you don’t leave your house. Put the kids to bed order take out and some wine and talk. Talk about anything BUT autism or the kids. Talk about trips you want to take, friends you have met how things are at work or how attractive you still find one another… anything, anything BUT AUTISM. Maybe take a moment to thank one another for the work you see them putting in or ask how you can both somehow take the pressure off of one another. Because its no secret that the divorce rate in Autism families is high. Like 80% high. My husband and I almost fit into that statistic two years ago as we sat in that Detroit courtroom holding hands unsure of how to fix it and we still aren’t perfect but what got us back on the right track was taking a step back and remembering what brought us together in the first place. Because despite all the changes that Autism has brought to our lives and to us as people we are on this road together and even though we often approach our sons care from different angles we have the same goals in mind and the same intense love for our child that no other person will ever have towards him.

Therefore, we must see that what our spouses are doing whether it be staying home to run to therapies or gong to work each day every clean dish and every paid bill is a major contribution to our child’s well being and success. We musn’t continue on in this thought pattern of negativity and battling one another. Accept one another, thank one another, encourage one another be gentle with one another and last but not least love one another. You are not co workers in a mental hospital. This is not just behavior and therapy management this is Love management. When you look at it from that perspective I promise you everything will change and the chaos may not physically diminish but your soul and your home will become a much calmer place.

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