“Honestly, my marriage would thrive with more respite options, but we simply don’t have the luxury to invest in one another because who will care for our son?”
Third in our series on the impact of severe autism on marriage.
By Jessica Ingle
My son Zeke is 6 years old. He was diagnosed with severe autism at age 3, and he is nonverbal. There have been six nights in my son’s life where my spouse and I have been able to get away with one another. Two of the three occasions were in the same town we live in - so no, not some tropical paradise we were running away to! We were desperate and delirious from a lack of sleep because Zeke doesn’t sleep — never really has. Even as an infant, he would cry for hours, and most days, so would I.
My wife and I would take turns with him throughout the long nights so that we could attempt to sleep if the screaming wasn’t too loud. We were desperate for a full night of rest together so we begged our parents to keep Zeke so that we could get a hotel room close by. Yep, that was the goal of our getaway — sleep.
Our ten-year wedding anniversary was recently approaching, and we planned to celebrate by vacationing in the Bahamas for four nights. Not for weeks or even a week - simply 4 nights was all we allotted for ourselves. As our departure date inched closer, I teetered between being ecstatic and terrified. I was nervous to leave Zeke, but I had his schedule and routine written down minute-by-minute for his grandmother.
Zeke’s schedule is extremely busy and has many moving parts. There are therapies, school, our work, his evening meltdowns due over-stimulation and hopefully sleep. Every day is different but a constant merry-go-round. Zeke wakes up and sometimes eats breakfast and then we figure out what clothes will be tolerated for the day before brushing his teeth. This can take up to 20 minutes because he often refuses. There is never a morning to just lay around and be lazy together due to work, school, and therapy obligations, but the evenings are the hardest. There has to be a set of eyes on him at all times because he is an eloper or will jump off the back of the couch and hurt himself or accidentally break a picture frame and cut himself. Most often, one of us cooks dinner while the other entertains Zeke and then we switch roles for clean up. Bath time is a two-person job as he doesn’t enjoy them most nights. Once all of this is finished, we give him medicine to help calm his brain and induce sleep. He usually goes to sleep by 9:00 pm, and if we’re super lucky, he will sleep until 6:00 am, but most nights it’s closer to 4:00 am when he wakes up and then our day starts all over again.
But 36 hours before we were scheduled to leave for our anniversary trip, we landed in the emergency room. Zeke was constipated and projectile vomiting. My spouse ran home to gather supplies for a hospital stay while I settled him into our room. I canceled our tropical vacation the next day. Thankfully, we were given a credit and can reschedule. We’re hopeful that we can go next year on our anniversary. Fingers crossed.
Zeke was in the hospital for 6 days to clear the impaction which meant we stayed the entire length of our anniversary trip. While there’s nowhere else I would rather be when he’s sick, it stings a little bit as well. My marriage is so often put on the back burner because of our son’s needs and my spouse and I don’t have the time to spend with one another because our world is consumed with autism. Date nights are nonexistent, but every few months we try to spend a few hours together alone; however, the work required to schedule all the moving parts is exhausting, and the fallout from the change of routine can last for days.
Honestly, my marriage would thrive with more respite options, but we simply don’t have the luxury to invest in one another because who will care for our son? While we’re thankful our parents have kept Zeke in the past, it is becoming harder for them as they age, and Zeke is getting bigger. As he ages, our options for respite decrease, and that makes it even more difficult to cultivate our relationship because when he is around, no one is resting. No one is having a quiet conversation and there are no romantic dinners for two. We aren’t able to hire the teenager from down the road because it’s too dangerous and most people are not equipped to care for a child with severe autism.
If my spouse and I were able to have two hours alone every week and didn’t have to worry about the care Zeke was receiving, we would be unstoppable. My family would flourish! My spouse is my best friend and a wonderful parent to our little boy, but it would be so nice to have time to be together — alone. Time to invest in our marriage and time to invest in one another. Is that too much to ask?
About: My name is Jessica. My spouse and I have been married for ten years. We have one little boy, Zeke, who is 6 years old. Zeke was diagnosed with severe nonverbal autism at age two after he regressed and lost all language and social skills. Our home base is North Georgia. However, we are traveling full time in our RV this year. I have my own blog at https://www.facebook.com/Zandme2/. I have also been featured with Finding Coopers Voice, Love what Matters and Her View From Home.