When Emma was first diagnosed, she was four months away from her third birthday. Since that fall, now seven years ago, we continue to show up for her in ways we could not have imagined. As many of you with a child with autism know, engaging your child can be complicated. Emma cannot have a “conversation” the way her neuro-typical brother, Nic can. We cannot have discussions with her, there is no easy back and forth of ideas and opinions. Because Emma is rigid in her desires, outings can become problematic if they are not kept to a strict schedule. The central park carousel must be ridden and then we must go to the zoo, but only after we have watched the brass animals go around when the clock strikes every half hour. Once in the zoo we must watch the seals being fed and then go see the penguins, followed by the aging and now blind seal, then the polar bear and finally a visit to the bats, before we can leave. Often Emma will then insist on a visit to the petting zoo where she is more interested in patting the metal replicas of the animals, which then make the appropriate animal sounds, than the real animals.
When both the children were toddlers we were frequent visitors to the American Museum of Natural History on the upper west side of Manhattan. During the winter months I often took the children four or five times a week.
“Once the kids are older, I hope never to go to that museum again,” I grumbled to Richard one afternoon after an exhaustive five hours spent there. “And can we add every playground that exists?” I added.
And then we got the diagnosis and everything was up for grabs.
My time with Emma now includes listening to music and dancing together, walks and yes, lots of playgrounds, amusement parks, the zoo, the various carousels the city has to offer, swimming, but also reading and her literacy program. Richard still takes Emma to see “the snake bite boy”, which is Emma’s name for the American Museum of Natural History. But it is during Emma’s “study room” sessions that I see her progress in real, identifiable and concrete ways. It doesn’t matter whether I am feeling optimistic or not, the evidence is there, right in front of me. We have kept a record of those first hours when she was learning to form the letter “a” to now, when she is struggling to write two and three sentences at a time.
This morning was a difficult session. She was required to write three sentences from memory. At a certain point I said, “We cannot give up, Em. We have to keep trying. I know it’s hard, but you can do this.”
Those words were probably more meaningful to me, than to her. They would be an apt mantra for me to repeat to myself every morning.
No matter what, we cannot ever give up. We have to keep trying.
For more on Emma’s journey through a childhood of autism, go to: www.EmmasHopeBook.com