Our Life as a Family with Autism: Planning to Have No Control

I heard a quote tonight: “Having children is like watching your heart walk around outside your body for the rest of your life,” and I just can’t stop thinking about that. 

Raising children is harder than I ever thought it would be as a young mom— you really just don’t know what you don’t know. You don’t know what you are in for.

They put this beautiful baby in your arms and it’s all over. You will never completely rest, never stop worrying, never be able to completely put yourself first anymore. The worry doesn’t stop. 

This blog is about autism, but yet, it is also just about being a mom and a wife and trying to make it all work. It is about the dynamic of relationships and the strain of navigating life with a child with a disability. As a mom with an adult son with autism, OCD, seizures and all that comes with those diagnoses, I find myself some days overcome by anxiety. I like to be in control, but parenthood takes away the control— and when you throw in autism, the control is completely blown up. 

There is no control and there is no planning. The best of plans work until they just don’t, which causes tension and fighting. I don’t talk a lot about what autism does to relationships and marriages. I mean, what does it really do? Yes, Kevin and I “made it” but that doesn’t mean it wasn’t a lot of heartache or that everything is all fine and good because Dylan doesn’t live with us. We will live with autism for the rest of our lives. We will fight every day for Dylan, and we will fight every day to make it all work.

Sometimes, the issues we deal with can be so overwhelming, and when we don’t agree it feels impossible to get to the other side. I have been open about the tension in our marriage when Dylan lived at home. In the height of Dylan’s worst aggression and behaviors, Kevin said to me, “I just can’t do this anymore.”

My immediate thought was, “Wow, you can’t do what exactly?” To think my husband was giving up on me and on our life was a lot to absorb. I had to dig down deep with that one. My first born, my Dylan, my 24/7; how could he not live with us?

He wouldn’t understand and I honestly didn't think I would survive that. But, I made a commitment to my marriage and my family that meant I would do whatever it takes to make it work. I didn’t choose for autism to be such a huge part of my life, but we don’t always get to choose our paths.

Marriage is like parenthood: hard work and a ton of compromise. Some days it feels impossible, even when you have made all the plans. Some days, the best of plans blow up. Some days, it feels like giving up. Moving my son out of the only home he knew and loved when he had just turned 17 was hard. Most days I would say it was simultaneously the best thing for him and our family, but also the hardest thing.

There are days I second guess it all. Did I choose my marriage over my son? Did I pick what would be best for Anderson over what was best for Dylan? The struggles don’t go away and lately they feel so heavy. I feel plagued with the what ifs. What if autism would have never been a part of my life? How would we all have turned out? That’s a dangerous game to play with your mind.

It’s as if autism isn’t hard enough with the behaviors, tantrums, medications, seizures, issues at school, and doctor visits. We forget what it all does to relationships. Your marriage, other children, friendships and work are all affected for so many reasons.

I can remember the plans I cancelled with people, the things I missed, the neighborhood parties we didn’t attend and the swim club we could never join. The way I threw myself into work to escape. All of that always seemed so important, but it is nothing compared to what it does to relationships within our family unit. At times I feel as if the dynamic was broken, the things we lived through did too much damage. 

The way a word you never really heard before, autism, can upend your life is sometimes too much for me. The ripple effect it can have on every single part of your life and the lives of those you love. Some days I don’t want to fight, I just want to be.

Some days, I wish things would have been different—different for the whole family. All of the hopes and dreams we had that didn’t work out and that bruised our family some days still show. Bruises like those we hide should never be seen. Bruises that, even though have faded, will never really never go away.  

Some days I wake up and I just think of Dylan smiling at me. Dylan asks where his dad is or where his Anderson is and I smile. Dylan asking me to lay with him and pat his back. Dylan saying, “Mom, we aren’t crying today, we are happy.”

I think of the greatest love I have had the pleasure of experiencing—the unconditional love from a young man that only wants the most simple things out of life—and I remind myself that God always knows what he is doing, and that we will all be just fine.