I never thought of myself as radical. If anything I spent most of my life trying to somehow fit in, even when it seemed impossible. By fitting in, I really meant not sticking out. In my mind it seemed that if I could achieve the latter, perhaps the former would follow suit. As the years went on I became less concerned with fitting in (I conceded it was too lofty a goal) but remained in the background, desperately trying to at least not stick out.
That doesn’t mean I went against my values. My moral compass was always very strong and I felt compelled to always do what I felt was right, no matter how unpopular. I just didn’t talk about it… much.
When I had my older children that meant I was known as an “alternative” parent- breast feeding on demand, co-sleeping, carrying my kids because they didn’t like the stroller. I listened to my children and “indulged” them which some would consider spoiling. I knew I was not very mainstream but living in a trendy big city I wasn’t alone either. Ours was a popular rebellion and quite widely known and even accepted. I wasn’t fitting in with the mainstream, but not sticking too far out either.
Sophie was the third child and born at home (I finally felt, the third time around strong enough to break this social taboo). She was a glorious baby, there’s no two ways about it. Calm, open, gentle and perpetually happy. Everyone who met her was taken in by her spell (they still are). We were a happy, not-mainstream but not-too-radical family. And then all of a sudden, we had to cross the line, although we didn’t realize it at the time.
Just before age two Sophie became violently ill and profoundly regressed. Her speech which was developing at an advanced rate was suddenly gone. Her interest in toys, people- gone. She became almost catatonic staring at Thomas videos with unseeing eyes. We took her to the doctor of course because we were worried she was very ill with a degenerative or metabolic disorder. The next six months were a blur of tests and appointments (and the birth of my youngest son too).
At the end we were given a diagnosis – autism and global developmental delay. We were handed a bulging folder of places to call and sent on our merry way with commiserating remarks. That is all. And thus we found ourselves at a crossroads.
On one side was the well-paved road of Autism Intervention. The road where you set up ALL the therapies, try ALL the supplements and hope against hope that with a proper combination of the above her autism vanishes or reduces in potency. Of course in her case it was doubtful but better do “something” than nothing right? No alternatives were presented on this road. You are to travel the weary path, vent and complain if you need to but keep trudging ahead because her future depends on it.
On the other side- well there was nothing I could see. It was a dark and wild path, there were no guidelines, no directions and only the knowledge that it was not the first path. We started hesitantly down the well- paved path first. Met with some therapists. Researched some supplements. Quickly grew disenchanted.
The therapists’ really had no idea what to do with Sophie (or us), we could see that. She was aloof, she was hard to motivate or engage, but she wasn’t doing anything wrong. Their whole “plan” hinged on behavioural modification or intervention- we kept stressing her behaviour was great. They looked down at this obviously very autistic child, calmly doing her thing and her parents saying she’s fine, really just you know. Autistic.
My gut instincts started letting themselves be known. Often it felt like screaming in my head when some expert was “explaining” Sophie’s behaviour to me. Stimming. Obsessive. Repetitive. Withdrawn. Eye contact. It was wrong, they were wrong. I tried to see it all from her perspective. I didn’t understand all her behaviour that is true. But just because I didn’t understand it didn’t make it inappropriate. Instead of trying to intervene with it, eradicating it without understanding I chose to go back to the crossroads. We will take the dark, uncharted road- and we will tame it, map it, make like peaceful explorers of foreign lands.
I went in with the assumption that she does things for a reason, even if isn’t clear to me what it is. I decided to observe and learn first and intervene only when and if necessary. I avoided fear-based articles and carefully chose who I connected with in the autism online community. I sought out autistic writers and advocates to learn from and challenge prejudices I didn’t realize I had. Above all, I placed the emphasis on our connection and establishing her trust.
Two and a half years after diagnosis, our relationship is blooming. We are in such perfect harmony, sometimes I catch myself forgetting she doesn’t speak. She trusts us and seeks our help when needs something. We presume competence that when she’s expressing she’s not interested in something, she really isn’t and we let her be. Since we’ve never limited the way she comforts herself through chewing, flapping or finding quiet places of refuge, she’s very comfortable in her body and in her home. I hope she feels she’s respected exactly as she is and genuinely likes us.
Our wild path doesn’t seem so dark and scary anymore. In fact it feels soft and green and peaceful. We walk it with Sophie who is happy and free. And me- when I stopped trying not to stick out, I found a place where I truly fit in.