Beloved

I read a post this morning on the parenting website I occasionally visit from a woman who was upset because her friend lied to her about receiving a big bouquet of flowers. The poster was convinced it was a lie because she recognized the photo her friend sent was a stock image from Google. I felt bad for the friend. It sounded like a little-girl lie, from a place of insecurity and poor self esteem. Perhaps she’s down on herself and needs to know she’s worthy of some flowers, or that men find her attractive.

Lying is a developmental milestone and we were thrilled when Sarah developed the capacity to deceive us or act out a little subterfuge. She did this in a couple of ways. If school was boring, she’d pretend she was sick or press the “I don’t feel well” phrase on her Talker and go to the nurse’s office, and have the nurse call us to get her. This didn’t happen often because she normally loved school, but there were a statistically significant number of times that we received a call from Sarah’s school(s) saying “Sarah doesn’t seem to be feeling well. She says her stomach hurts. I think she needs to be picked up.” Upon pick up and being settled at home, she would be fine. And we would ask her, “Sarah, did you lie about being sick? Were you playing a trick?” She would laugh hysterically, and we would try to look stern and peevish. Behind her back, we would high-five each other for her pulling off this little charade. We both had a long history of skipping school before we reformed and became good students when we got to college.

Sarah had to take a series of IQ tests when she was 10. I regret that we put her through that now, but we were trying to get her out of her hideous placement in the MuchLovedSchool (see my earlier blog post), and the thought was possibly to find a private school placement. These tests unfolded over many months, because they were accommodated to Sarah’s disabilities and administered in small chunks, in our home, with the aid of her tutor, and using her Talker.

The classic IQ test asks so many questions that are both “values driven” and simply beyond the every day experience of a kid like Sarah. Many of them are also hopelessly old-fashioned. For example, there are questions that asked her why we wear seatbelts in a car. She doesn’t wear a seatbelt; she rides in her chair in a wheelchair van. I’m not sure she can visualize our seatbelts from where she sits. Also, there were questions about whether she helps mom with the housework (obviously not); what to do if there’s a fire in the house; and how to find a pay phone (really ridiculous, there are no pay phones anymore).

I hated that she was being asked these questions that she had no life experience to answer and that her intelligence was being judged as a result. And that her “failure” to help out around the house was considered either an intelligence downgrade or some form of sociopathy.

The psychologist who did the tests wrote a very nice write-up of Sarah’s strengths and her charming personality, and ultimately determined she had a difficult IQ to measure but estimated it around 70, or some level of intellectual disability. Selfishly, I had fantasized that Sarah was secretly a genius, but I knew in my heart that she had cognitive as well as physical deterioration. She was still our beloved girl.

Adding: The Memorial Bench is in. Photo above.