I need a break. Every mom says that. But my doctor also says this about me.
And it’s no wonder; a 2009 study found that mothers caring for children with autism experience chronic stress comparable to combat soldiers. Combat soldiers.
My day starts early. And not because I am a morning person. In fact, according to family lore, my ability to sleep until 9:30am, which emerged early in my infancy, was one of the deciding factors in my parents’ decision to gift me with a sister just after my second birthday. God, the ultimate jokester, sent me a son whose circadian rhythm has him rising sometime between 4:30 and 6:00am, depending on time of year. Which means that I am rising sometime between 4:30 and 6:00am.
During the hours that the kids are at school, I squeeze in errands, chores, and any phone conversations that require my full attention. Because once the bus drops off Ben at the end of the driveway, there is no telling what the remainder of the day will be like for us.
A therapist comes to our home two afternoons a week to work with Ben on his behavior, social interactions and coping strategies. Visits to other specialists and the occasional haircut round out the rest of the afternoons. Dinner, shower and bed for Ben soon follow. And then I have some time to spend with our other kids as well as get to any other housework that I hadn’t been able to complete due to conflicting events such as meltdowns. Meltdowns that can last up to five hours. Oh, and there is a lot of paperwork and phone calls with various doctors and insurance agencies to fill my time as well.
You’d think weekends would be a break. You’d be wrong. They are even harder. Without the structure of the school day, Ben suffers from perpetual boredom. Our weekends are filled with his relentless needs and behaviors. There is no break from his meltdowns and constant desire for us to entertain him as he is unable to fill the hours of the day on his own. We often find ourselves relieved, come Sunday afternoon, that Monday is just around the corner.
Some months ago, at my annual physical, my doctor pressed me when I complained of fatigue. Instead of giving me “motherhood is tiring” or some other empty platitudes, she gave me a prescription: for self-care. “You must carve out some time for yourself to exercise,” she said. She explained the physical and mental tolls that stress cause and warned that it would get worse, not better, if I didn’t take better care of myself. Citing recent studies of the long-term health risks for caregivers, she then gently asked if we had looked into respite care — short-term termporary care provided to people with disabilities so their families can take a break from the daily routine of caregiving – as a way to assist me in my role as caregiver, mother and wife.
An article in the March 2013 issue of the Journal of Autism and Developmental Disorders confirms the information my doctor gave to me. Researchers found that parents of children with autism were less stressed and had improved marital quality with each hour of respite care received. The study seems to suggest a relationship between respite care, stress reduction and quality-of-life improvement.
But finding someone to care for Ben is not easy. While moving onto a street with three teens would have made other parents think “instant babysitters” and start scheduling regular date nights, Ben’s autism is much more than the average babysitter is able to handle. Parents of kids with special needs are less likely to leave their children in the care of others for a variety of reasons including shortage of trained caregivers, limited resources and lack of nearby family. I fit this profile.
Still, I am managing so far to follow my doctor’s advice. I exercise almost every day and attend a weekly support group. And the four weeks Ben spends at Round Lake Camp during the summer provide the respite that our entire family needs. It gives us the ability to interact as “normal” families do and for my husband and me to reconnect as partners rather than caregivers. My doctor was right; respite does everybody good.
Rabbi Rebecca Einstein Schorr is a CLAL Rabbis Without Borders Fellow whose work appears regularly on the Rabbis Without Borders blog and Kveller.com as well as a variety of other online sites. Writing at This Messy Life (www.rebeccaeinsteinschorr.com), Rebecca finds meaning in the sacred and not-yet-sacred intersections of daily life. Follow her on Twitter @rebeccaschorr