Every year, my son’s high school band travels to some kind of festival or competition. The hard work is mixed with fun and independence for the kids and is a good growing experience for them. I have another blog post to write wherein I geek out about being a band mom.
This post is about my daughter who, between first and second grade, was diagnosed with high-functioning autism. Aspergers got wiped out in the last upgrade to the diagnostic manual, but I don’t think she would have qualified as that high functioning due to the language regression she experienced between one and three years old.
She’s high-functioning enough that I don’t say “she has autism,” I say “she is autistic,” the same way I say “she is artistic,” or “she’s a good reader,” or “she’s hilariously passive-aggressive.” She is quiet. She has a hard time making eye contact and speaking to waiters or other people she doesn’t know. We worked for months on desensitizing her to eye contact. She likes her alone wind-down time after school. She guards her privacy with the zealotry of a tiger protecting its territory.
I love her all the more because she’s hard to know, hard to share time with, hard to talk to. I put conscious effort into it. But it’s not easy and I’ve had periods of despair.
Here I should make a note: I can only speak to my daughter’s experience on the spectrum. I feel that autism is something that varies so much from child to child that you can infer some things (sensory issues are very common, but what they’re sensitive to and whether they seek or avoid it is individual) but I don’t dare claim that I speak for any other family with an autistic child other than ours. I know no other autistic children and what I say is only about our experience. Please never presume to generalize what you know about one autistic child to another.
When we found out her brother’s band was traveling to Disneyland to play in the park, I knew my daughter and I had to tag along as band-groupies. You don’t take one child to Disneyland and leave the other behind. And with her father traveling along as a chaperone, I was not about to be left behind either.
I was excited. Traditionally, Disneyland brings my daughter to life. She speaks more, interacts more, and is generally bouncier and happier. She’s able to withstand crowds and boring lines and it stretches her capabilities.
Not so much this time; I found myself disappointed. I had hoped to get her to talk with me and bond a little more before she starts middle school, where I know she will need me as she navigates the passage from tween to teen. She seemed tired and gloomy. I blamed it at first on the omnipresent hoodie: the North Face fuzzy teal hoodie that she wears all the time (even to bed). I felt she was tiring out because she was overheating and dehydrating at a rate she couldn’t replace.
We had flown in on Wednesday to get some “girls’ time” in the park. And it worked to a certain extent. I put my daughter in charge of our expedition in the parks, letting her choose rides and when to return to the hotel to encourage independence and decision making. But that girl really came alive when her father and brother arrived on Friday evening and we met them at the bowling alley in Downtown Disney (kudos to Splitsville Luxury Lanes for handling a huge group of teenagers pretty darn well).
Particularly, she has a good dynamic with her brother, who is six years older. He has always treated his sister with kindness and indulgence. For his sake, Nora removed her omnipresent headphones (yes, she wears over-the-ear headphones under her hoodie to keep the world at bay) to listen to the two Ballard bands play in the park. We met for dinner that night and then her brother went on Big Thunder Mountain with us and she sat with him and had the best time. There’s a special connection there and I’m frightened of my son going off to college in Fall of 2020 while my daughter enters seventh grade.
When my husband and I parted Saturday night, I bawled like a baby. My husband and I are very attached and spend little time apart save for the workday. Once we parted and were on the way back to our hotel, my daughter wrapped her arms around me and did her best to comfort me with a running litany of reassuring words. Listening to her empathy (which is difficult for kids on the spectrum), I started crying even harder, because I know there is so much potential that’s still suppressed inside her. All we can do is to continue to shape her behavior, extinguishing alienating quirks and encouraging her strengths. And isn’t that the same that any parent does with their child?