This past week, Ash Wednesday marked the beginning of the Christian observance of Lent, the time leading up to the celebration of Easter. Several of my friends, some of whom are devout Catholics, have followed the tradition of sacrifice by giving up something during this time. Some have given up candy, others will not use their Facebook accounts, and a few have pledged not to swear during Lent. A discussion arose the other day among my colleague friends, who are an eclectic mix of religious backgrounds, regarding how some people “cheat” by indulging in the “forbidden” by not counting Sundays in Lent and allowing themselves a reprieve or by justifying backslides by reasoning that when they gave up sweets, they didn’t mean cookies, only candy, as if they’re somehow outsmarting God.
Growing up in a Protestant denomination that did not traditionally encourage giving up something for Lent, I always felt sorry for my Catholic friends who were struggling with the temporary loss of something beloved during this time. Ed, who was raised Catholic, tells of “forgetting” to forego meat on Fridays by having a hot dog. Amazingly he would remember after eating it and would relieve his guilt by promising himself to say Hail Marys or to go to confession. Somehow I imagine God finding his approach to sacrifice by admitting guilt and doing penance more genuine than those who deny themselves yet complain about it the entire duration of Lent.
While I admire those who not only give up something meaningful for Lent, but also do so willingly and wholeheartedly, I am not one to observe that tradition. However, some online conversations this week with fellow autism moms made me realize that for those of us whose children have autism, sacrifice is something we know every day. Of course, all parents make sacrifices for their children, but those whose children have greater needs often must give up more for the sake of their children. Certainly, we don’t want to be martyrs; therefore, others are often not aware of how our lives differ greatly from theirs because we have had to give up things others take for granted. While we wouldn’t trade our children whom we love dearly for anything, we long for a simpler life for them and ourselves.
While parents of typical children breathe a sigh of relief once their infants start sleeping through the night, many children with autism continue to have sleep issues for many years. An autism mom told me this week about never getting a good night’s sleep because her adolescent son still interrupts her sleep. This reminded me of a period when Alex was probably seven years old and would climb into bed with us in the middle of the night. Taking him back to his own bed involved a middle of the night battle, and three people sleeping in a bed was way too crowded. This meant that one of us would be like Goldilocks, searching for a bed that was “just right.” Each night created an adventure to see where we would sleep—in the guest bad, in Alex’s bed, in our bed, with Alex, alone, and rarely the three of us together, just too tired to move. Eventually these nightly meetings faded, and we were delighted that Alex was happy to sleep in his own bed again so that we could all get a good night’s rest.
Another willing sacrifice autism parents make for their children is financial. Of course, typical parents know how expensive raising a child is, but those who have children with autism have additional expenses, including various therapies, such as speech or behavioral therapy that may not be covered by insurance. In addition, those who must be on special diets due to food allergies or sensitivities require special foods that may cost twice or three times as much as typical foods. Also, some parents have chosen to give up their jobs or scaled back their careers so that they can be home more with their children, meaning less family income with a more expensive child. Although we have always been blessed with enough financial resources to pay for whatever Alex needs, I know many families who struggle mightily and sacrifice greatly for their children.
Perhaps the least obvious sacrifice parents of children with autism make is a typical day-to-day existence, the little things that others don’t realize we miss. Often, families whose children have autism can’t take vacations because the change of routine and familiar places would greatly upset the child; others can’t financially afford such luxuries. The last vacations we took were when Alex was a toddler—before we knew he had autism and when he traveled well. Since then, we have not been able to travel with him because his unpredictable behavior would defeat the purpose of a vacation—relaxation. In addition, many parents of children with autism can’t go out and leave their children with a babysitter. When Alex was younger, my parents were always willing to watch him so that Ed and I could enjoy an evening out. However, as he and they grew older, we worried that his behavior could be too much for them to handle. He could move faster than they could, and his need for instant explanations required practice in fast-talking, often giving glib, creative, fictional answers. As my mom once said, “I can’t lie fast enough to suit him, like you can.” Consequently, Ed or I go places separately or the three of us go together or more often we all stay home. Essentially, parents of children with autism establish a new normalcy that is unlike lives in other homes. While most of the time, we adapt to the new routines, we do at times covet other people’s seemingly less complicated lives and feel thankful anytime difficult stages pass that make our lives easier.
And so, while my friends are giving up Facebook, favorite foods, or foul words, I have made a conscious choice not to give up things for Lent. As a matter of fact, I have decided to work on not giving up. I will not give up searching for ways to make Alex better, so I will deliberately seek research and compare notes with other autism parents through Facebook and the Internet. I will not give up chocolate, which keeps me happy and calm, even when Alex tests my patience. I will be honest about my frustrations, which may involve occasional colorful language, so that I can deal with obstacles. Most of all, I will not give up hope, which keeps me going on a daily basis. With the hope that Alex will get better, we anticipate the day when we can look back at the things we have given up and declare that any sacrifices we made out of our love for him were, indeed, worthwhile for what we gained in return. Isn’t that the purpose of Lent, after all?
“Live a life filled with love, following the example of Christ. He loved us and offered himself as a sacrifice for us, a pleasing aroma to God.” Ephesians 5:2