November 17, 2018

Coping through absurdity

I have seen what a laugh can do. It can transform almost unbearable tears into something bearable, even hopeful.”

— Bob Hope

When I picked up my son’s high school graduation announcement cards from Fairfax High School last week, it reminded me of other graduations, and I found myself thinking back to 1985, when I graduated from the double master’s program at Hebrew Union College-Jewish Institute of Religion, in what was then called “Jewish communal service” (now nonprofit management), and also at USC, in public administration.

Graduate school was a heady time. I was working almost full time as press secretary to a Los Angeles City Councilmember and squeezing in classes in the evenings, on weekends and two mornings a week. Classmates were landing interesting and well-paying jobs, sometimes with multiple job offers. Friends were getting engaged and married, and my parents were both alive and figuring out their post-retirement lives. When I looked ahead into the future, I saw almost boundless opportunities for myself and for my peers. We just needed to make good choices. Life seemed predictable, orderly and rational, with the biggest challenges centered on falling in love, getting married and figuring out how many kids to have.

I was fortunate to find a good and loving husband and then blessed with giving birth to two healthy, beautiful redhaired children, first a girl and then a boy. But then things got complicated. When our son, Danny, was 2 months old, he developed a bad cold, which moved very quickly into a high fever, a bad cough and then he had trouble breathing … RSV pneumonia. He ended up staying five long nights in the pediatric ICU at UCLA hospital, hooked up to electronic leads, a pulse oxygen monitor on his tiny forefinger. 

When we took Danny home, we noticed that has wasn’t moving around much, but during his well-baby visits to the pediatrician, I was told, “Every baby develops at his own pace.” Then, at 6 months, both he and his big sister came down with chicken pox, and he stopped meeting developmental milestones. At 10 months, he still wasn’t crawling, could say only vowels and was unable to hold his own bottle. After many medical appointments, he was eventually diagnosed with non-specific cerebral palsy (CP)/developmental delays. Boom. Suddenly, we had pivoted from reading books with titles such as “What to Expect When You Are Expecting” to “How to Take Care of Your Child With Special Needs.”

In those pre-Internet days, I went to the local public library and starting reading the shelf of books on the subject of special needs and developmental disabilities. Experts in the field stressed how important it was to develop “coping strategies,” which ranged from informal to formal support networks, to taking up yoga and daily mediation. Parents, I read, needed time alone together and should avail themselves of “respite services.” Siblings could also be negatively impacted by so much parental attention going to the child with special needs.

One group of academic researchers studying the topic of parenting children with CP reported in the journal Pediatrics that “although caregiving is a normal part of being the parent of a young child, this role takes on an entirely different significance when a child experiences functional limitations and possible long-term dependence. … Consequently, the task of caring for a child with complex disabilities at home might be somewhat daunting for caregivers. … It is not fully understood why some caregivers cope well and others do not.” 

Nothing I read talked about the need to sit back, laugh and simply accept the absurdity of life as a parent of a child with special needs. Such as when Danny, at around 10 years old, was having frequent nosebleeds and we went to a Halloween carnival. At first, some people there thought the nosebleed was part of his costume when I kept asking bystanders to bring us tissues and wet paper towels. As usual during a nosebleed, Danny would not keep his head still and was yelling, “No, no, no.” Then someone stepped forward to help and said he was a doctor. He tried to stanch the blood flow, but to no avail; I had to eventually thank him and send him away.

Other times, I have had to come up with creative solutions to bureaucratic roadblocks and end up laughing at the ridiculousness of the situation. There was a time when we needed a certain nutritional supplement that the state-funded regional center could purchase for us but couldn’t get funding until we had received denials from our private health insurance company. The problem was that our health insurance was dragging its feet to issue the denial letter. I found myself in my car, yelling at the customer service representative on my cellphone, “I need that denial letter, and I need it now.”

From reading the blogs of other parents of children and adults with special needs, I know I’m not alone in taking comfort in black humor and laughing at the crazy situations of our everyday lives. Parents of children with special needs quickly bond in own little “tribe” with our own inside jokes. There’s the towering 22-year-old guy with autism who still loves to watch “Sesame Street,” the teenager who will refuse to eat anything unless it is cut into tiny cubes, and the nasty stares from strangers when your kid throws a tantrum. There’s also the scary reality of knowing your child will need help for the rest of his or her life.

And there’s a solution, too: We can take a step back, dig deep to find the absurdity of what we are facing, and make the choice to take to heart the words of that famous philosopher Mel Brooks: “Life literally abounds in comedy if you just look around you.”

Michelle K. Wolf writes a monthly column for the Jewish Journal. Visit her Jews and Special Needs blog at special_needs.