Years ago, I noticed a framed text hanging on the wall of the room where I waited while Alex was doing occupational therapy. On that wall hanging was an essay entitled “Welcome to Holland,” a work many parents of special needs children have read at some point. Basically the gist of this work is that you wait and plan all your life for a trip to Italy, but suddenly you find you are going to Holland instead. This becomes a metaphor for having a special needs child: you waited all your life to have a child, and now that child is not what you expected. The Holland essay describes the initial disappointments, but then goes on to point out the positive aspects. Frankly, I think the Rolling Stones sang a similar theme better, “You can’t always get what you want, but if you try sometime, well, you just might find you get what you need.” Parents of children with autism have written parodies of “Welcome to Holland,” most memorably “Welcome to Beirut,” in which having a child with autism is like being sent to a war zone. At times, our life has been “Welcome to a Remote Island” because we have felt isolated—and sometimes have deliberately isolated ourselves—from the rest of the world, dealing with issues that other families don’t understand unless they’ve experienced them first-hand. Most of the time, however, I would describe our life with autism as “Remembering the Roses.”
To understand this parallel, I need to explain the plot of one of my favorite “guilty pleasure” movies, Ice Castles. [SPOILER ALERT!] This movie follows a talented young figure skater who is permanently blinded in an accident, but through the love of her father, boyfriend, and a mother figure learns to ice skate again. In preparation for her return to competition, they plan every detail carefully ahead of time to make sure nothing goes wrong because Lexi, the skater, doesn’t want anyone to know she’s blind and feel sorry for her. Their plan almost works. After a successful skating program, fans throw roses on the ice to show their appreciation, which trips the blind skater. Her boyfriend comes out on the ice to help her up and clears the roses out of her path so that she can skate off the ice safely. He then tells her, “We forgot about the roses.” For me, this is the best explanation for our life with autism.
Life with autism has required that Ed and I carefully plan ahead to avoid circumstances that will upset Alex and send him into a meltdown. Not only do we discuss possible pitfalls and things that might set off Alex, but we come up with ways to soothe him, should these events occur. None of us want to be taken by surprise, to be tripped by roses we hadn’t foreseen coming. Of course, things happen in life that are beyond our control: the power goes out in the middle of a video game, the cable television goes out in the middle of his favorite game show, someone innocently says something he doesn’t like, and other inconveniences occur. Sometimes we forget about the roses and risk his wrath. While we cannot plan when these roses will hit the ice, we know they will and try to have action plans ready so that he can cope with disappointment. One evening when Ed was teaching class, we had a sudden power failure, and I had to regroup quickly to deal with Alex’s agitation. Grabbing flashlights, lighting candles, cranking a radio to listen to music, and pulling out the dice game Yahtzee for us to play, I was able to convince Alex that this was an adventure. He especially liked taking the flashlight to use the bathroom and decided to do that about every fifteen minutes for fun. Nonetheless, he adjusted well, and as they say, “No harm, no foul.” As he has gotten older, he has been more flexible and less likely to become upset when the unexpected happens, which is a blessing. Still, Ed and I constantly plan ahead, trying to make the path smooth for Alex so that he can move forward safely and easily, not tripping over any stumbling blocks along the way.
“Mark out a straight path for your feet so that those who are weak and lame will not fall but become strong.” Hebrews 12:13