Barb Cohen

Mom, Am I Disabled?

Nagging All the Way to the End and Beyond

The answers we demand from our children say more about us than about the kids.

Posted Sep 04, 2018

heather/CC BY-NC-ND 2.0
Source: heather/CC BY-NC-ND 2.0

My autistic daughter, Sam, periodically reads this blog, especially when she knows she is the subject. She also provides me with refreshers about events I describe and enjoys searching for appropriate images with me. Sometimes she chuckles about anecdotes that she remembers fondly, but every once in a while she will ask for clarification about something painful that I’ve written. What did I mean? Sometimes I wish I had not opened a particular can of worms.

I have not written much during the last year. Sam’s final year of high school was difficult, maybe more so for me than for her. We visited eight colleges and met with seven disabilities services coordinators. At each visit, I studied the woman (all women) across the desk and tried to see my daughter through her eyes. Sometimes this was easy because sometimes she told me what she saw. Once, in front of Sam, she expressed shock that my child had been accepted to the college. At several others, Sam needed a break from the interviews and while she wandered outside we discussed the challenges she would face. Every time I left the interview and the tour unsure whether my daughter could succeed. Every time Sam sat in on a class; she declared it to be “wonderful.” Every time I asked her what she thought about the other students; she had not noticed them. She noticed the size of the campus, the cafeteria options, the distance from our house, the availability of a ceramics studio, but never the people.

I chose not to write about any of these trips. Sam knows some of my fears—about meltdowns, about being overwhelmed, about disorganization, about missing the cats that she refuses to separate so that she might have an emotional support companion. But I have other fears that I will not admit to her, a complex web of emotions, mostly pessimistic and despairing, that overwhelmed me on the return leg of each visit. These fears do not belong in print for her to read.

Sam left for college last week. She has a single in an all-female dorm and she’s succeeded with laundry and the dining hall. She’s explored her small town and met an elderly shop owner whose three cats lounge in the store; they appreciate Sam’s attention and Sam assures me that the shopkeeper welcomes her. Every day seems to bring some ups and some downs, but so far Sam has not signaled any regret about moving away.

In fact, when we dropped Sam at college she was surprisingly anxious for us to be gone. I’m not sure why I was so surprised. No one is telling her to modulate her voice, to eat with her mouth closed, to remember deodorant. More importantly, no one is asking for her to account for the way she chooses to spend her time.

Yesterday I made the mistake of asking her if she’s made friends or had any good conversations with her peers. She has not. I say this was a mistake not because she got angry, but because a story showed up on my newsfeed later in the day that reminded me of the interaction. The story is about a mother who texts her high-school aged son every day at lunch, asking if he is sitting with anyone. Apparently she has texted this daily query for years. She feels terrible about his isolation. Finally, one day, her son does not respond with his normal admission that he is alone. Some students have invited him to join their lunch table! It is a feel-good story.

I did not feel good reading it. I cringed. What must it be like to have your mother ask every day if you have finally succeeded? And at something that may be more important to her than it is to you?  What if my mother had asked me, every day, if I had finally been chosen in the first, second, or even sixth round for a kickball team? If I had finally found a boyfriend? If her hopes for me had finally been realized and now we could both feel like winners?

I always thought that my praise for Sam's kindness and insights and talents would give her a positive self-image. I still hope so. But when I read the story about the lunch table query, I heard myself. Have you made any friends? If she makes friends, she will tell me about them (or not, as she desires).  If she feels lonely, she will tell me (or not, as she so desires). I may still remind her to send thank you notes, but it is time to stop harping, unsolicited, on her challenges. Sam deserves an apology; I hope she accepts mine.

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