It is easy to see what’s wrong – with the world, with other people, with ourselves. When Emma was diagnosed with autism we were told about all that was “wrong” with her. Her deficits were listed with great care: Her eye contact was weak. She showed little interest in interaction with others, she didn’t point, she didn’t ask questions about others, she showed little awareness of others, she seemed oblivious to others pain or feelings. Her verbal skills were delayed, her fine motor skills were delayed, her ability to play, to project, to engage in any sort of fantasy or pretend play was almost non-existent. The list went on and on.
But what of her assets? What about all the things she did that showed tremendous creativity and intelligence? Where was the balance in her many and varied evaluations?
When Emma went to a Special Education Pre-School I met a little boy who couldn’t have been older than three. He was pointing to all the signs in the building and reading them. I exclaimed to one of the therapists standing nearby how incredible this seemed to me. She then told me he was hyperlexic and that they discouraged him from reading as it wasn’t “normal”.
I have never forgotten that. Here was a child with an unusual ability. A talent that could be used to further his education and perhaps interests and yet it was being discouraged. Is that what we want from our children – to be “normal”? What do we sacrifice in our attempts to “fit in”, to adapt, to be like everyone else?
Emma has a beautiful voice and a love of performing. If we have guests over she asks to “sing a song” for them as she did last night. Sometimes she needs to be reminded that the song must eventually end as she can get into a loop, singing the same refrain over and over again. She hasn’t mastered the whole concept of “losing ones audience”. But we encourage her singing and desire to perform just as we encourage Nic to practice his Alto Sax and the piano. Emma has a great many assets, things she loves doing over and over again. With Nic we use the word “practicing”, with Emma we say she is “perseverating.” Yet in her perseveration Emma is practicing as much as Nic is. The difference is, Emma will do the same thing over and over again for hours, whereas Nic will practice for 20 or 30 minutes and move on to something else.
Last night as guests began to arrive, Emma was upstairs in her “study room”, sitting on the floor in her party dress writing. When I went upstairs, this is what I saw.
She was talking to herself and picking up each piece of paper then reading it before placing it back down and moving to the next.
As we had run out of lined paper, she had made the lines herself, before writing the sentence – The kids can hug.
Now this scene isn’t exactly “normal”, on the other hand very little in our household is.
For more on Emma’s journey through a childhood of autism, go to: www.EmmasHopeBook.com
For quite some time now, I have been unable to end my day without reading about Emma’s. She is remarkable, and Ariane, your thinking and writing opens doors for all of us. I remember years ago leading a Brownie troop in which half of the girls had Down syndrome, and wondering the same thing — the “deficits” were endlessly enumerated. But what of the unique gifts they had that were out of the realm of understanding of those without Down’s? Sitting in New York now, I feel joy to see the delight on Emma’s face as she embraces life with gusto 2,000 miles away.
Wonderful to hear from you and thank you for adding to these thoughts. Back in New York soon! I’ll call you when we’ve settled.