How did it get to be the end of April?
Setting: rain and 40 degrees. The house is dark. This is a day for the potato leek soup that is in the fridge and a book and a cozy chair and throw over legs. Maybe it is not a day for momentous accomplishments or even folding the wash.
Time: Monday morning. That time when online school work comes streaming in and students are supposed to get organized for the week. In this house, it is the time to wrangle Julia to help me organize her work. This morning, Julia has a check in with her case manager and a speech group.
Back story: Last week, I advocated for support from school to get school work done. Two weeks ago I advocated for her speech services to resume. The weekly plan came back this morning with no more help than last week. There is a speech group meeting this morning.
Character: Increasingly, Julia lives and talks in a fantasy of teen sex and anime violence. Lots of blood and boys obsessed with her. She talks to herself. More and more often. She resents being pulled into the reality of our lives (which, at least to me, is not so bad at all).
Plot: Julia is declaring independence today. She doesn’t want me to have anything to do with her schoolwork.
And so . . . what?
Her case manager says to let her be. I know what that means—she will do nothing for school. Right now, she is sitting in front of her school chrome book, clicking on files and fooling around. I expect she will abandon it relative soon and go to her iPad and stay on it and in her imaginary world for the rest of the day, parent permitting.
I have let go of many things. Gosh, that sounds like a martyr or at least a saint or someone stuck knee-deep in self-pity. Don’t mean it like that. Just a fact. I know what parenting a typical child is like—you control, nudge, guide and let go little by little until they are independent. I don’t mean that kind of letting go. I have been Julia’s frontal lobe, her Jiminy Cricket, her social planner—I am the person who tells her to look both ways at every street corner, who instigates and organizes all educational and social activities, who reminds her to say thank you, set my place as well as hers at the table and keeps track of all time sensitive doings from going to bed to sitting down for a class.
Julia is 19 and tired of all that.
Is it time for me to let go? I have let go of my aspirations for her, mostly at least. Julia has incredible talent in art—she can make any kind of art she puts her mind to, but therein lies the challenge that cannot be overcome. She has long been content with drawing or playing with clay or sewing or anything else in a compulsive, repetitive way. In her younger years, she drew the same dinosaurs over and over; now she draws the same anime figures. Julia has an imagination but again it is just used in her areas of extreme interest. She can read well but left to her own devices, she will read only in areas of high interest in nonlinear fashion. Over and over, when she is highly agitated, I have seen her write incredibly cogently usually complaining about me, but she does not use that focus for school writing or for creative expression. She makes up stories all the time but absolutely refuses to write them down or dictate them.
It is her teachers, her aides, her therapists and me who have forced her to learn everything from reading to folding her clothes. Of course, this is true for small children—parents and teachers model and teach and repeat until we do not have to.
Julia is 19 and tired of all that.
And she had internalized so little of what she needs to live in this world, to survive independently.
And so, what happens if I let go? If I stop insisting on getting school work done? If I stop insisting on reading and doing math everyday? If I stop insisting on cello? If I stop insisting that she cannot draw the same picture over and over for her blog? If I stop organizing the blog? If I stop keeping track of when appointments are or when to go to bed or to take a bath/shower for that matter?
Best case scenario: Julia comes to me later today or tomorrow and asks for help getting her back on task, on track.
Other scenarios: Ummm, not sure but I’ve been with Julia without a schedule and home life usually gets tougher and tougher, culminating in tantrums and meltdowns. I don’t allow days without our baseline work. I have made time for reading, math and drawing every day for years. Those activities have been what grounds her and gives us the possibility of our normal.
Exactly what I have to let go of: Do I let go of being the frontal lobe? No more planning, no more education of any kind, no more school or lessons or even therapy. Even therapy requires being somewhere at some time certain, these days on zoom. No more direction.
I have long read about adults with autism who spends their lives in their parents’ basements playing video games. In my arrogance, I’ve assumed that I could arrange Julia’s life so she didn’t end up like that, so she didn’t want to end up like that. Ah, my hubris!
People say I have done a good job supporting Julia, but I have not managed to instill any sense of ambition for a life, intellectual or other kinds of curiosity, a love for anything or anyone that would inspire her to strive to do or be. Maybe it couldn’t be done. Maybe I didn’t do what she needed. Maybe . . . maybe . . . trying my best has not been enough.
A long time ago I wrote that when Julia came home, we knew something was not right but at the time we were only equipped to love her. And love wasn’t enough. Today, I amend that to say that I have been equipped with love and 14 years of research and learning, brilliant teachers, generous aids, incredible therapists, kind respite providers and of course, a community of friends. And none of that is enough.
Today, Julia has declared independence.
One thought on “independence day”
Thank you, Suzanne, for sharing the difficulties of your journey together. With love, Joyce