March 7, 2023
It wasn’t the first time I had wondered if my daughter was autistic. It wasn’t even the first time I had been met by an educator with that anxious expression of bracing themselves for my possible reaction. That horrible cocktail of dread, guilt, and frustration. As a parent, I had a similar one churning in my guts.
But it was the first time I was concerned about my daughter’s safety in a school setting and it was also the day I learned how to clean sap out of someone’s hair. (Not to sound like an SNL skit, but coconut oil works great by the way.)
It was an innocent enough childhood miscommunication, seemingly, that started with these words at a preschool pickup.
“We played “bury me” today.”
Her sweet curls and cherub pout stared up at me casually as if this was a common occurrence. That was when I noticed the sticky mat of hair towards the back of her head.
“Uuuh, ok…who did you play that with?”
“U’tter kids…,” I loved that expression from her toddlerhood, “Sam dug a hole and then covered me in bark chips…”
“Sam”, renamed for her privacy, could best be described as a frenemy. My daughter believed they were friends and we were having difficulty explaining to her at the tender age of three that maybe she should play with others in the group.
“Uh-huh,…”other” kids? Did Sam take a turn being buried?”
“Uuuuh, no…she he’p bury me.”
“Did anyone else get buried?”
“….no…I feels itchy.”
At this point, the teacher looked at me a little uncertainly and nervously giggled. She muttered something about looking into that and I made a mental note to talk to the girl’s mother about the “bury me” game. We took a long bath that night and picked out the sap and splinters while discussing friendship. It was good preparation for calming my anger before broaching the subject with her teacher and the other student’s parent.
The “bury me” game ended, the friendship fizzled out, and we’ve learned many lessons since. One of which is, a traditional preschool, much less a public school, doesn’t work for every kid and, sadly, not for ours.
It’s been a long process of discovery, heartache, successes and failures, and acceptance along the ever-confusing road of childhood for someone on the spectrum. Since then, we have had many adventures in homeschooling and neurodivergence. I tore my hair out over curriculum choices and ultimately wanted to slap myself when I realized a free library card, the internet, and the community around us is all we really needed to support her. That there are many opportunities for homeschoolers in the Portland area with persistent research and the courage of networking with other families. Not an easy feat on the rough days or the three-plus years of the pandemic/forest fires/grieving loved ones days but we keep trying.
The acceptance didn’t start and end with the revelation of our children being neurodivergent or with the choice to homeschool them. It’s been a process of moments throughout these years where we’ve been met with challenges and disappointments that we’ve had to work through. It meant letting go of my expectations, and theirs, of what their childhood might look like without traditional schooling. I found it difficult to find groups and programs that worked for us at first let alone ones that were accepting of them.
The daily friendships, classroom parties, field trips, and performances. I missed the parents of her classmates with whom I had made friends with who I quickly lost touch once I became a teacher as well as caretaker and parent to my two kids. There was so little time for myself before and now it felt impossible. My health worsened. My chronic pain became a barrier to accessing activities for them when I couldn’t drive more than ten minutes without suffering. My energy wasn’t enough to keep up with them so I had to get creative with how to support them. The world doesn’t stop and the needs of your kids are ever-present despite caretaking others, grieving others, and a pandemic.
Now that the pandemic has changed and the world is trying to return to its old self we’re returning as well and discovering new resources and programs. Like many homeschooling families with autistic children, we discovered that they socialized even more than when they were in school and that we get to do field trips any day of the week. That it was also ok to be bored and that it was good for them. It meant accepting my feelings around all of the unexpected needs of our children and for them to acknowledge and accept themselves even more than anyone else might offer. Because, ultimately, being weird means being brave enough to be yourself. Their happiness might look weird to others but it was a barometer of discovering the friends that wanted their brand of weirdness.
I had to embrace grieving the loss of what I had hoped for in their lives and acknowledge that I was wrong in my preconceived notions of what homeschooling was but perfectly reasonable in missing the life we once had. I was operating off what had been taught to me throughout my life which was to believe in the public school system. The same one that had let me down in my own childhood. Yet society has gaslit us to believe that this is what we should offer and force our children to assimilate into without questioning whether or not it is an efficient or adequate system for teaching them. A system that is created for the middle section of the bell curve of society and no one else.
Our two kids are considered “twice exceptional”, a double-edged sword and a dubious honor at best. They’re neurodivergent yet advanced in certain areas so they sit at either end simultaneously. Even if we wanted to return to public school, it wasn’t safe for them or equitable because the valleys in their needs are not supported. Think of it this way, they had a place at the table but a chair that didn’t function. Many families like ours have discovered this as well and it’s a painful topic for many of us that are left without a school meant for our children. (see below)
We learned instead to embrace the uncertainty. That creating chances for socializing by making new friends with common interests were not only more rewarding but more sustainable long-term because that’s what works in the REAL world as well. Just sitting next to someone in a classroom doesn’t automatically make for a friendship and, the irony, you’re encouraged to NOT socialize in a classroom as opposed to learning in a hands-on environment together while visiting a farm, examining a bee hive, or being lab partners together where interacting is crucial to accomplishing the activity.
It meant our children had to learn to trust themselves to follow their interests as a guide (“unschooling”). We focused on their strengths and talents so that she could immerse herself in what wasn’t available, or possible, in a conventional school setting. This past fall we did acting classes with two different theatre companies and singing lessons. I can safely say that I’m sick of Julie Andrews but I know most of the lyrics to her popular tunes now.
I related the preschool story to my now preteen daughter on the way home from taking her to her classes at an independent learning center (aka community college for kids where they take classes ala carte). The center is known for being welcoming and incredibly quirky. (During our first year there, there was a teenage boy who used a bathrobe as a raincoat.)
Yet I will always worry about how others treat her and keeping her safe. A lingering shadow of our shared trauma of what she’s endured in the past. So on that commute home, I couldn’t fight my curiosity any longer after retelling the tale of the “bury me” game to her. After our laughter died away I glanced up at her in the rearview mirror.
“Hey,…. do they tease you at all?… In your classes?”
There was the typical, customary pause from her and then a bark of a laugh,
“Hah! They have enough problems of their own…”
We clearly are well-versed in sarcasm and comic timing. Now for the next lesson…
To learn more about autism and special education please see the links below.
Each March, the National Association of Councils on Developmental Disabilities’ sponsors the month to:
- Raise awareness about the inclusion of people with I/DD in our communities.
- Discuss the barriers they can continue to face.
- Celebrate how they live and thrive as valued community members.
- Join a social media campaign to highlight how people with I/DD form strong and diverse communities.
Theme
This year’s theme is “Beyond the conversation.” The council challenges us to ask, “Once the conversations have taken place, what comes next?”
Kelso Kids 