‘It’s stressful to throw money at something that has almost invisible results’: Having a child with severe autism affects your marriage

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“Autism affects your marriage. You knew this was coming… if I wrote about how autism affects siblings, surely you knew it would affect Mom and Dad. Yup — autism has taken a toll on my marriage. But before you get concerned that my husband, Brewer, is sleeping at the Day’s Inn, let me begin with a spoiler alert: I love Brewer more now than before autism. It hasn’t broken us.

Naturally, I was the first to freak out. You see, I have always excelled at overreacting. Even today, I’m a retired perfectionist and I have just the right amount of OCD to make sure nothing gets past me. Brewer, on the other hand, is the ‘I’m not here to play doctor’ type. Being at different stages of acceptance of Sadie’s diagnosis caused our first major strain on our marriage. We were disagreeing about a lot of things: mainly how much anxiety this should cause and how we should ‘fix it.’ We did what people are ‘supposed to do,’ we went to counseling, and it was there that we learned to agree again: We agreed that we both did not like the counselor. This little bit of humor helped us get over that hurtle and the formal diagnosis and therapies started soon after that. Sadie’s autism kicked into high gear and pretty soon, there was no denying all my fears were right on target. Crap! This would have been a good argument to lose. From that point on, I think Brewer and I quickly aligned our strategy.

Autism will test all the common stressors of a marriage: money, time, parenting, lack of sleep and even lack of self. We have felt them all.

Money — Autism is flippin’ expensive. It’s really stressful to throw money at something that has almost invisible results and yet, if it was your kid, you would probably do it, too.

Time — yikes, this one is our greatest stress. Time spent ‘together’ as a family, is really separated. We wind up in a divide and conquer arrangement. ‘You go enjoy this with Celia and I will wait with Sadie.’ There are just not that many things we can all enjoy as a family – even the trampoline park has become unsafe as Sadie has become stronger but no more aware of her surroundings. This is a major stressor for the both of us because it’s the part we miss the most. Couple time, hmmm… Does it count as a date night if you bring a 10-year-old chaperone and spend the night at an arcade? Our true alone time is often spent sweeping up pretzels while watching the Daily Show. It’s not all that romantic.

Which leads us into the next stressor — lack of sleep. We have a perpetual toddler, so 10 years into parenting and we are still dealing with interrupted nights which does not make us kind or attractive at times.

Finally, lack of self — with a lack of time comes a loss of things that were once important to us. Brewer used to run almost daily and I used to paint. Now there are just too many pretzels to clean up and we are tired.

Hold on! I know it sounds like our marriage is doomed. How on earth could exhausted, stressed and tired people keep it together? Especially knowing its not going to get any cheaper and sleep is not just a year away. Well, I think we have some strategies in place.

1. We keep our sense of humor. We laugh at each other, ourselves and yes at Sadie. When Sadie eloped down the hallway of the Hyatt, I chased after her in nothing but a towel. We could only giggle at our insane situation.

2. We have our rituals, like a family dance to Sadie’s favorite ‘Baby Shark’ song. We are silly with our kids and with each other. We have those things that only we know about.

3. We can predict each other’s breaking points. 20 years in, and Brewer can see when I need a break and I do my best to predict when he needs his space. Its truly magic.

4. We accept that our life isn’t what it was. Brewer doesn’t even ask ‘what’s for dinner’ anymore. He mostly says, ‘What should I bring home?’

5. We have divided our roles and are grateful for each other’s efforts. I officially manage Sadie’s appointments, therapies and schooling. Brew supports me, but he can’t do two full time jobs. He manages other things and frees me up.

6. We are adapting. Moving from Florida to Pennsylvania was an effort to adapt to our situation. We needed a state with decent services for Sadie. We could not keep paying out of pocket. It has helped. We have accepted that we are not going on a couples cruise anytime soon. So we are investing in our backyard — making that a special place of respite for us.

7. We root for each other. Each day, we try to do at least one thing to let the other one know ‘I see you.’ Yesterday when it snowed and all of Pennsylvania scratched their heads in disbelief, Brew brought home spring in the form of cut flowers. He is still romantic.

8. We both agree, we could not do this alone. This situation is tough, but almost anything is better with a buddy.

Brewer and I have work to do on our marriage. After all, every marriage needs time and attention to grow. We clearly need to figure out how to have a night without kids and how to carve out time for each other in a consistent way. We need to have more things to talk about besides Barney, autism, kids and work. But we appreciate each other and both choose to love what we have, especially each other.”

This story was submitted to Love What Matters by Regan MacKay Lister of Hummelstown, Pennsylvania. Her 7-year-old daughter, Sadie, has severe autism. Lister has been writing a post a day on her This is Autism Facebook page explaining her family’s life with autism in honor of autism awareness month. Read some of her posts below:

‘People often ask me what is the hardest part of having a child with autism. The irony is, it’s not the child with autism. It’s my other child.’

Her ‘disability is invisible’: Mom painstakingly navigates outings with daughter who has severe autism

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