My friend, Kathy, babysat Mark for me when I went back to work. She said it was an easy job, and we would laugh at our twisted good fortune. Her son, Monty also had Down syndrome. Even at two, we could sit our boys on a blanket and walk away; and they would still be there when we got back!
Eventually, to get around, Mark had learned something we called the “jib-skid.” It was no less the way a chimpanzee scooted around on all fours, swinging his bottom forward to move along. But mobility was a triumph in any form at that time.
I enrolled Mark in a kiddie gymnastics class at three, even before he could walk. He would be close to four years old, and weighed nearly 40 pounds when I finally put him down for good. I just couldn’t carry him anymore.
At three, he needed to learn social rules, and how to be a part of peers his age. He had very little impulse control, so standing in line, (let alone he was barely standing!), and waiting his turn were emerging skills at best. There had to be a transition from “emerging skills” to mastered skills, but what was the answer? Where could we find the balance needed?
So I just began including him wherever I found toddlers. That’s how the local Kiddie Gym Class became our first social experiment. You should have seen the faces of the gym-mommies when I plunked Mark on the mat in the circle with their children. I knew they thought Mark would “ruin” the class, but my warrior mother instincts gathered for the battle and I’d just ignore the incredulous looks from the gym class mommies. They were patient, but could not understand it. Well, here was a place Mark could stand and safely try to walk like his little peers. Everywhere he moved there was an industrial strength mat to cushion his falls! It was a fun, active place with jumping, swinging, rolling, etc. And Mark could not do most of the things in the program. But he did want to do the activities he watched his peers do. I could accept how odd it was to include him, but I don’t regret it. The task had become to convince Mark that walking could be as efficient and easy as the “jib-skid.”
At first, the other children all learned the “jib-skid.” It became definitely harder to ignore the indignant gym-mommy comments. One day, the instructor proposed a race from one end to the gym to the other. I felt she did this to prove a point to me about Mark not being qualified to join the class. But, as this was a sort of “raisin test” I expected Mark to win. Which he did. He “jib-skidded” into racing history. I felt so smug!
Mark took his sweet time learning to walk. He weighed nearly 40 pounds when I finally put him down for good. I just couldn’t carry him anymore
Still, we kept on doing “normal “family outings and expected Mark to participate. We knew those family activities would be absolutely abnormal, knew we had to have a plan, delegate “vigilant eye” shifts, and steel ourselves for the inevitable public scrutiny our family would need to endure. We would sally forth and hope to endure each public experience with Mark, with grace and aplomb
Take the word Aplomb; notice it sounds like A Bomb.
Wherever we went, we attracted attention. Mark expressed himself verbally with loud unintelligible word-like calls and charged around doing his “jib-skid.” Picture a busy place like the Monterey aquarium….and he’d disappear into hundreds of people. I couldn’t find him, because he was on the floor. He scooted under and in-between crowds of feet while we ran stooped over trying to spot him. Panic and thoughts of impending lawsuits, negligence, and CPS investigations would nearly paralyze me; but I was part of a search triangle, and had to cover my corner. We hollered for tourists to “stop the kid on the floor!” Sooner or later we could expect a friendly sort to dangle Mark up over the crowded heads and holler back, “Got’im!” We’d run to get him like game show contestants who walk away proudly with the booby prize.
When he finally learned to walk, he ran instead. At that time, child harnesses were in vogue. I thought, “How perfect!” and bought one with a rainbow leash immediately. We went to the Steinhardt Aquarium and Natural History museum in San Francisco. I explained to Mark that the harness would keep him close to us and he wouldn’t get lost. It took all of us to harness Mark up and tugged on the lead. He looked like a trussed up turkey, so his reaction wasn’t startling. However, he began to scream and holler in tones we had never heard before. It was the sound of utter humiliation. Even with all his modifications and contrived activities he had never felt indignant. We would pay for this transgression.
The verbal complaints elevated to an Oscar award type collapse on the pavement complete with piercing screams and a death roll worthy of an alligator. I imagined the headlines again: Parents Humiliate and Abuse Handicapped Child in Public! I tried to calm him without success. Giving in, I undid the harness and dropped it in he nearest trash barrel. Mark got up and took off running after a flock of terrified pigeons. To this day it is one of my favorite pictures.