As I said yesterday, when I de-registered @PanKwake, I had some very specific ideas about how I planned to ‘teach’ and ‘educate’ my daughter. Those were based primarily on my previous experiences of homeschooling my old offspring in America. But they were reinforced by societal perceptions of what education is and how it is done.
I remember running into the SENCo (Special Educational Needs Coordinator) from her school a few weeks after we de-registered. The woman was not a bad person, simply as burned-out as we were by a system that does not work as it should and a head teacher whose attitude fosters a bullying environment from the top. She smiled at us and said that she believed this was for the best. Then she spoke of all the amazing things that we could see and do around London.
That was my intent. I had it all planned out. We already had a stock of books that I had been buying for years. I signed up for not one but two online curriculum. I joined another website that offered unlimited worksheet downloads. I set up a little desk in the living room.
Of course, the plan was to work the curriculum from Monday to Thursday, then spend each Friday on a fieldtrip to museums, the zoo, the aquarium, and all the other exciting places. But I wanted @PanKwake to be around other children her age, too. So, I enrolled her in both Rainbows (Girl Guides) and an after-school program.
When the council bullied me into a meeting just two weeks after I de-registered @PanKwake, the older gentleman, whom I later discovered was a former head teacher, had nothing but glowing things to say about the resources that I provided. Despite several meltdowns during his visit, including an escape attempt by my little Houdini, I felt things had gone well.
Until the man called me a couple of days later. My older daughter, who worked as a teaching assistant with autistic children, and some friends of mine, one of whom worked in law enforcement, were there. I was distraught when the man informed that despite everything I was doing correctly, he was not going to ‘approve’ our home education. He said this was because he felt ‘something’ was off with @PanKwake. He claimed that if he checked approved the council would be under no obligation to help us. I was angry as I hung up that phone, but my daughter and friends talked me down. They convinced me that the man was right.
I already knew what was ‘wrong’ with @PanKwake. In my quest for better seizure control, I had ‘sneaked’ into a conference for professionals. It was entitled ‘Behaviors in Epilepsy’ and was sponsored by a national charity for childhood epilepsy. The auditorium was filled with SENCos, GPs, and epilepsy nurses. While my intent was to make a connection with one of the researchers and worm my way into having my daughter seen by a real ‘expert,’ I, in fact, learned far more valuable things that day.
(At this point, @PanKwake had been having seizures for over two years. She had been on a couple of medications without good control. But she still had not been by a neurologist or had an MRI. Both of which would have happened within weeks in the US.)
One of the presentations, in particular, felt like an arrow to the bullseye. The women were speaking about something called Pathological Demand Avoidance. The way they spoke – as if these children were sub-human or monsters, lab rats to be studied – was disheartening. Nonetheless, as they went down their list, @PanKwake ticked each and every box.
That weekend, while she was with her father, I bought the only book available at the time on the subject. I read and I cried. It was almost as depressing an outlook as those women had been. None of these people went on to have careers or go to college, despite many being extremely bright.
But they did not have me for a parent. And they were not homeschooled. I made a commitment that weekend. @PanKwake would be different. She would have opportunities those young people never had.
So, I began to apply many of the parenting techniques in that book. Of course, I could not use them all the time. I had no control of how others like the leaders of her Girl Guide troop or staff at the special needs center treated her.
And sometimes I miscalculated. In my efforts to give @PanKwake a ‘normal’ childhood, I often overestimated her tolerance for activities, especially all those Friday fieldtrips. Almost all of which ended in a double-meltdown. Her melting down, us getting off the bus or Tube, me pushing her buggy until she fell asleep, and me crying the rest of the way home.
But when I did apply those techniques, they worked. Which only reinforced in my mind that @PanKwake had PDA. (And back then that was all I knew. Now, I recognize that she is a PDAer, just as she is #ActuallyAutistic and I am #neurodivergent.) Convincing the experts of that fact was a lot more challenging. And I’ll leave that for tomorrow’s tale.
The day after that call I got back on the phone. @PanKwake had been seen a couple of times by someone from CAMHS (Children’s and Adolescent’s Mental Health Services). I made an appointment with her. At the same time, @PanKwake had a new pediatrician for her epilepsy. This one noticed those behaviors. I breathed a sigh of relief. We were on our way. I would get a diagnosis. Then she would get the resources necessary. And everything would be alright. It would just take time.
Time, though, was not something that man intended to give us. Three months later, I received another phone call from him, demanding that we meet again. I explained the steps I had taken to get the assistance he felt we needed to understand @PanKwake’s needs, but that we were on waiting lists, so meeting now would be pointless.
That’s when he told me the truth…
He did not care about any of that. He just wanted to see PROOF I was educating her.
I saw red. After everything that school and the doctors had done. After years of failing my child and me, this man was demanding I prove I was doing what those schools had not?
With many people that bullying might have worked, but I’m American. We don’t trust government to begin with. And certainly not when we have fallen through the cracks time and time again.
I went home…and did what I should have done before that first meeting, before I sent that de-registration letter. I did my research. I connected home education groups and advocates. And I learn my rights and responsibilities under the law.
I wrote a three-page letter to that man’s supervisor, mine and my ex-husband’s local councillors, and MPs. I detailed all the school’s failings, the man’s first visit, and those follow-up phone calls. I quoted the law and I told them in no uncertain terms, I would not be putting @PanKwake or myself through another meeting. I did agree to send an annual report, but honestly it was more like when I felt like it.
And what was happening with our ‘homeschooling’ during this time?
After a few weeks of @PanKwake meltdown every time I tried to get her on the computer or force her to ‘read’ about Biff, I gave up. My excuse then was that until I had that diagnosis, until we knew what was going on, and had more support, I would just let things slide. After all, back home in America, she would be in kindergarten and attending for only half-a-day anyway. Besides, most Scandinavian countries don’t begin formal education until seven or eight, and their schools are some of the best.
@PanKwake discovered YouTube and Minecraft. We took to the local parks. I did my best to foster those positive socialization skills. Even though every time we left the house, it usually ended in another meltdown. (Sensory overload is a ^itch. I should know. I lost my sh^t yesterday when I went to the shops.)
But she was learning. Things that teachers and therapists had tried to teach her like ‘now, next, then.’ The speech and language therapist had spent six sessions on that…and gotten nowhere. @PanKwake became obsessed with the Ninjago television series which is in it a serial episode format and @Aphmau’s Minecraft diaries. Suddenly which episode came first, next, and last mattered to her.
And that was my introduction to self-directed education… But I still had those experts how always know best to contend with. More about that story tomorrow…
Self-Directed Learning & Neurodiversity 