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Leda Natkin Nelis Headshot

Groundhog Day

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Sometimes days spent with children on the autistic spectrum begin to feel like "groundhog day" as we parents are forced to adhere, because of our children's need for sameness, to carefully-crafted schedules and routines.

During our now-teenage son's early years, this desperate need for sameness was for him a safety net. Sensory integration dysfunction and an impaired ability to read social cues can make the world a frightening and unpredictable place. The comfort of the expected insulates the special needs child from the residual anxiety that comes from possessing a compromised nervous system.

Our son's former need for sameness made our life very constricting. A visit to the Science Museum each Saturday, for example, became a display of military precision, a meticulously mapped out and performed drill rather than a relaxed outing. Our son insisted, first of all, that we enter the museum through one particular entrance. If this door happened to be shut due to building works or a security staff shortage, there would be tears and tantrums. Once safely inside the museum, we had to progress through the exhibits in a particular order: the ground floor outer space exhibit first, followed by the third floor flight display, then the first floor agriculture section with its life size harvesters. Only then could we stop for lunch at the ground floor Blue Café (always margarita pizza and red jelly, preferably eaten at the second table from the end), always followed by a visit to the interactive "garden" zone in the basement. Any attempt to alter the order of our visit would result in intense resistance bordering on a full-blown panic attack.

Adhering to a highly restricted diet is also typical of Asperger's and Autistic children. My son went through a period where he would eat only Kraft's macaroni and cheese, for breakfast, lunch and dinner. Most American parents are familiar with this iconic "food product" of narrow tubular pasta with its trademark fluorescent orange sauce. I will never forget a trip we took to the Caribbean when my son was 2 1/2 year's old. This sumptuous vacation was a gift from my parents to my husband for completing his MBA. Three generations of family decamped -- grandparents, parents, toddler son and infant daughter -- to a tiny island off of Antigua for a week. Despite the fact that all food was included in the price of the stay, our son refused to eat a single bite of the delectable offerings from the heaving buffet. Instead, we had to bring a box of Kraft macaroni mix to the hotel kitchen three times a day before mealtime. I had wisely tossed a dozen boxes of the pasta kit into our suitcase, but this stash lasted only a few days. On the fifth day of our stay, we had to hire a boat to travel to the mainland, and were lucky to be escorted to a dry goods shop which stocked Kraft boxes.

Our bedtime routine back then was equally rigid. Our son's nightly bath was always followed by three storybooks, which were then followed by four neurological rehabilitation exercises -- then lights out. Before falling asleep, our son had to carefully inspect his fire truck collection, to assure that all of his toy ladder trucks, pumpers and rescue vehicles were properly lined up. Wheels had to be facing straight ahead, and all ladders neatly pressed down flat against the sides of the chassis. These vehicles, by the way, were never used as props in imaginary scenarios (valiant fire fighters extinguishing a raging fire, perhaps?). Their sole purpose was to be meticulously lined up. Lining things up was one of the rituals which seemed, like all routines, to bring my son comfort.

At one point, our son decided that he could only fall asleep if listening to Beethoven's "Serenade in D." We set up a small CD player by his bed, but one night the equipment malfunctioned. After this evening, we set up a backup system in the form of a second CD player, all ready with a second Beethoven disc in place, just in case the first set up wouldn't play. One night, both CD players broke, and I tossed the entire kit into the bin, declaring our son's Beethoven phase to be over. Actually, this may have been the moment that our son discovered Snoop Dog. After several dicey nights of sleep, he learned to fall asleep without music.

With the passage of time, our son's need for sameness has greatly diminished. He can still be thrown by changes in routine. If his singing lesson is changed from a Saturday to a Tuesday, he is not happy. But he has come to realize that life is full of curve balls. My challenge as his mother is to encourage him to embrace and accept the occasional changes in routine that are part of real life, while keeping his daily life as structured as possible.