Every year we have a meeting with the Board of Education aka BOE. Yesterday morning was our scheduled meeting time, but because Richard has been ill, I went alone. I do not look forward to these yearly meetings. And as yesterday morning got off to a bumpy start I was doing my best to bolster myself for what I knew was going to be an emotionally difficult time. They always are. It is at these yearly meetings when we go over Emma’s IEP (Individualized Education Program). Each year the BOE sends someone from their department into Emma’s classroom to observe her for a half an hour. From that observation, a report is written, almost always a report we read with dread. It’s not that they are unreasonable or unfair, though sometimes Emma is unrecognizable, it’s that they are stripped down to the basics.
A sample from one of these reports: “Emma came down from the cabinet and lay down on a rug. At 9:07, she remained lying on the rug. At 9:08, she went out of the classroom and came back barefooted with a plastic box. A teacher assistant showed her two bottles of paint. She said, “no” loudly…” The report goes on to depict a low functioning autistic child (Emma) who is somewhat responsive to the teacher’s assistant, at times non-compliant and with almost no verbal language.
This year Emma was also assessed by a psychologist sent from the BOE. This report was even more troubling: “Emma is minimally verbal, spoke in single word utterances, or short, attenuated sentences for the most part, was able to repeat simple phrases heard, and was echolalic.” The report goes on: “Emma was able to hold a pencil somewhat awkwardly and make a scribble, or simple circular motion. She was unable to copy simple vertical and horizontal lines, or any simple recognizable geometrical designs.”
As her mother it is difficult to read these reports. I look at my daughter, my beautiful, funny, athletic Emma and I see her potential. I choose to believe she is capable of so much. I choose to believe she understands so much more than she appears to. I choose to believe she will one day read and write. I choose to believe one day she will communicate with us. She will tell us what it’s like for her. I choose to believe these things because to do otherwise is not a life I want to live. But when I am confronted with reports such as the ones I’ve quoted from, it makes me question, even if for only a moment these choices, these so called beliefs of mine. What if I’m wrong? A question I always follow with – what does it matter if I’m wrong? Because if I’m wrong, I won’t find out until I’m very old or will never know because I’ll be dead. I will always choose to believe I’m right about Emma. I have to. All the work we do with her every single day is because I believe in her abilities. I believe she can do more. I believe she is capable of so much. When I tell her we have to do yet another reading exercise or writing exercise I am doing so because I believe she can. When I read to her about Harriet Tubman or Helen Keller or Balto or the discovery of King Tut’s tomb, I believe she is taking it all in. When I ask her if I should keep reading and her answer is always – yes – I take that as confirmation of my beliefs. I know I am making a choice. I know my decision to believe these things are based on very little, but never-the-less I believe.
I believe in Emma.
For more on Emma’s journey through a childhood of autism and my journey in parenting an autistic child, go to: EmmasHopeBook.com
Emma waiting for her school bus this morning
Belief in something that cannot be seen, touched, or sensed is one of the most enduring and power-giving facets of being human. Victor Frankl in his book “Man’s Search for Meaning” said that the people at Auschwitz with him who survived the best were those who believed in themselves and believed that they would survive.
Perhaps it was irrational, perhaps it made no sense, perhaps it couldn’t be proven scientifically, but neither can compassion, hope, or love. What we value most in this world are all those things that give beauty and value to our lives.
So go right on believing because when Emma comes through all of this it will be because you and Richard have believed in her.
As does her Granma
Don’t ever stop believing in Emmma. She is communicationg to you she communicates to you ever day. With her body language with her epxpression with her unusual use of language. You know her best not a strnager who sees her for half an hour once a year.
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