Raising Sophie was a beautiful experience. Dealing with the insensitivities of the outside world could be challenging, however. The family was committed to avoiding two significant behaviors – anger when faced with insensitive adults who said stupid things or those that just stared at Sophie. Children with disabilities can adopt the bitterness of their parents and other family members and carry it throughout their lives. They can also embrace the self-pity inflicted by adults who may mean well but are unconsciously inoculating the child with a loss of self-esteem. It is no different than the combat veteran or professional athlete who faces a career-ending injury. Do they move on being comfortable and self-assured with their new life, or with the wrong kind of help, feel perpetually sorry for themselves and give up? It is a monumental decision point.
Years later, a wonderful thing happened. Sophie started to say more words, often in a string of sounds. It would take time to understand her version of words and phrases, but the startling thing was realizing her vocabulary. Over the years of listening to people speak to her, Sophie learned English. She knew the meaning of hundreds of words, including what people had said about her! A stranger not in constant contact would not understand most of her sounds other than a "yes" or "no" coupled with a head nod or nay.
A speech therapist began weekly sessions with her, starting slow with lots of repetitions while always challenging her to do her best. We learned that it took 28 muscles for a person to say a word. Sophie's brain would eventually improve her ability to use those muscles. Sophie loved her speech sessions, and it became clear that she wanted to learn and get challenged. There was no lack of motivation, and never would be in the years ahead.
In elementary school, she would occasionally win student of the week certificates, and she just loved the recognition. She then met two of the most important supporters in her life, her teacher in a "special needs" class and an art teacher down the hall. Sophie used a wheelchair while the others could walk and talk. These excellent, dedicated teachers taught her to read and paint and encouraged her to like herself just the way she was. There was no jealousy of what her classmates could do – she enjoyed them when they ran circles around her wheelchair.
In the next chapter, we'll shine a light on how other people came into her life with positive impacts and loved her response. Perhaps her story will instill in others of all ages and abilities a recognition that people with disabilities are not different inside and often become, with support, "special-givers." Sophie makes people who know her smile and laugh and occasionally shed a few tears with her. She has a sly sense of humor. For example, when asked what she wanted for supper, she said, "Where would you like to go?" Sophie loved going to restaurants.
Reading allowed Sophie to blossom with other accomplishments. She won awards for assistive devices that enabled her to do homework with online links to her public-school courses and began emailing her many friends. She needed two devices, a joystick that would move the cursor on a Mac monitor to the multiple-choice homework answers and an on-screen keyboard for letters and numbers. Also, a jelly switch would act like an Enter key when hit. It took her enormous patience and concentration to type a sentence, and she would spend two or more hours at it. If she did not know how to spell something, she would ask. We remember her asking how to spell "congratulations." We spelled it verbally, and she typed it something like "congadulasion." We did not clean her emails up – they were genuine, and her friends loved receiving them.
Everyone believed that Sophie had achieved a significant milestone. However, a new hurdle appeared before Sophie moved on to a middle school. A new adult came to see her in the classroom. He did not squat down and introduce himself or attempt to explain who he was or why he was visiting. He pointed to a classroom clock on the wall about 10 feet away and asked, "Sophie, what time is it?" She looked up and tried but had no answer. He asked her again, and she began to cry. As he started writing notes on his clipboard, her teacher had seen enough and told him Sophie could not see that far and therefore tell time on a wall clock. Sophie was willing to try hard. She always had. If he had approached the teacher first, he would have learned that Sophie could understand the time when given paper diagrams showing clocks with hands in different positions. Nevertheless, he exercised his authority to perform an IQ test to "better understand" her actual mental capacity.
Carly, the board of education testing professionals, and the family protested an unfair test. It compared her abilities, not within her peer group, but with fully able children. The person had the authority to insist that Sophie take the test. School staff did their best to accommodate Sophie by using methods and equipment more suitable for her speech and sight limitations. They summarized their opinion that Sophie was a high-functioning child despite her numerical score. Psychologists used such numbers in a darker period of medical history to differentiate and label people "idiots," "morons," and "imbeciles." To the testing team, her actual abilities were a much more accurate indicator of her mental abilities than a standardized IQ (intelligence quotient) number. They emphasized this to no avail.
A Note About IQ tests.
IQ tests originated in 1904. The French Ministry of Education asked psychologist Alfred Binet to devise a method to determine which students did not learn effectively from regular classroom instruction. Those students were assigned remedial work.
Intelligence Quotient. (No date reference). In Wikipedia. https://en.wikipedia.org/wiki/Intelligence_quotient#Current_tests
In later years he expressed his disagreement with its use to test students with disabilities against the various levels of IQ of very able students. Binet said IQ testing in such cases was inaccurate and never intended for that purpose.
*Please note that the names in this story were changed to protect the author's privacy and family.
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