How much does my child really understand? What is she thinking? What is it like to live in her body? What sounds does she hear? Does she know what she wants to say, but somewhere in between the thought and the attempt to verbalize it, the meaning becomes lost? Does she believe she is saying something, only to have us respond with bewilderment? What does she see? What does she feel?
Many autistic children through various communication devices have allowed us to see and hear what they are thinking and feeling. What they are able to tell us is both heartbreaking as well as miraculous. Heartbreaking because they are aware of so much more than they appear, they know they are different, they know so much more than they are able to communicate, have complicated, busy inner lives, know anxiety, stress, depression, joy, boredom.
When Emma first spoke she said, Da-da, ah-done, and a series of other words and phrases typical of a baby learning to speak. There was little to give us concern. What was unusual was the language acquired did not serve as building blocks upon which more language was added. At the age of 18 months Emma said – Chase me – we heard her say that for a few months, then it disappeared, never to be heard again. There were many words acquired then seemingly forgotten.
In the field of autism, this is referred to as regressive autism. Typically a child follows a neuro-typical child’s development, but at around 15 – 30 months begins to regress. However we continue to see our eight-year old Emma “learn” things, only to forget them later. Emma’s progress is not the steady progress one sees with neuro-typical children. Hers is more of a hic-cup. She paints with her brother, we document it, take photographs, exult in what amazing progress this means, only to have her never repeat the action. Countless times my husband and I have recounted to one another something Emma has said or done only to see it never repeated. The idea of a base of knowledge being constructed, the logical progression of a skill acquired, leading to another and another has not been Emma’s path. We are teased into believing something has been learned only to see our expectation and hope thwarted. We are left waiting. Yet some other action will then occur – wholly unexpected – to raise our hopes anew.
Once when Emma was about three I took her to the dentist where it was found she had one tooth more on the bottom than is usual and one less than the norm on the top.
“Is this unusual?” I asked the dentist.
“Why shouldn’t it be? Everything else about her is,” the dentist smiled.
I think of Emma’s progress and often despair. Yet why should her progress follow the same path as a neuro-typical child’s? Emma leap frogs where other children slowly, methodically climb. Emma shows tremendous bursts of cognition followed by lethargy and meltdowns. This is Emma’s way. Hers is not the path of other children. But it is a path, nevertheless. One I feel privileged to accompany her on.
Emma's Hope Book 