Independence

One facet of my life with Frances is that her unusual development makes the future even less predictable than I could have imagined.

For example, I had a toddler who could be left in a room for a few minutes while I went to the kitchen, who didn’t seem to notice if I was in the room or not.

As she aged, Frances became less and less tolerant of my absence to the degree that I now have an eight-year-old who truly spends every single moment with me. 

Coupled with her intense fear of going into a room by herself, her need to be with me means that we are ALWAYS together: I am with her as she falls asleep, and she is with me as I try to drink my coffee in the morning.

School, and a weekly 2.5 hour group on Saturday, is the only real separation that we have — and summer vacation is about one week away. Both school and her social group end in June, and I am thinking about this often.

I am hoping that the next round of occupational therapy sessions (after the waiting list again) will address independence as a goal.

I wonder if her need to be with me will intensify as she ages. I just don’t know. I’m trying to take one day at a time.

Post-midnight meltdown

Her bedtime routine is very strictly followed, and must include watching one of her favourite documentaries. If she should fall asleep before the end of the documentary, she will wake in the middle of the night crying that she hadn’t watched it. (In this panel, she is five years old.)

Goodnights 

The above panel illustrates a typical response from Frances at bedtime. Instead of saying goodnight in return, her unique use of language — posing an unrelated question — is the norm. (She is six years old here.)

The following response is one of the most memorable: 

At the age of eight, she now will occasionally say, “OK.”

Shelter in books

My family and I like to reminisce about the camping trip during which we had sought shelter in a bookstore, first from an unbearably hot summer afternoon and then from a tornadic storm later that day.

I was not surprised by the fact that we ended up in a bookstore as we all love books in our family; yet, nobody in our home appreciates a book as much as Frances does.

I first noticed Frances’s fascination with books when she was about five months of age. As she approached toddlerhood, she would peruse them and turn pages in a manner suggestive of a preschool-age child. (To be clear, she was certainly not reading.)

Frances did not play with toys, and she paid attention to household objects and books only. She did not tolerate “tummy time” on the floor until she was eleven months of age, but once she did, she reached for books.

She constantly requested, by pushing books against my abdomen or arms, that books be read to her, from about 12 months of age. (At eight years, she will still grab my hands to put a book in them.)

At home, from about the age of 13 months or so, she would use books to make other things, such as towers, and I often found many dozens of books encircling the dining room table like a sidewalk or lined up side-by-side as she aged.

At the library, during every visit,  I would eventually have to ask her to go play because my throat would be hurting from reading at least 30 books. (Hard candies helped, too.)

At bedtime, for years, I would read more than ten books every night until recently.

Now, she also reads to me at bedtime, and as her tastes become more obvious to both of us, I’m getting to know her as a reader.

I have a wonderful opportunity to watch as the concept of a book gains dimension to her through reading, and I like to think that she, my ear-covering daughter, is still finding shelter there from a noisy world.