This post from AutisticChick came up in my feed today, and it along with some of her other posts got me to thinking about Kender, about the differences between our life with Kender and what I see other people describing in support groups. I thought about the way I try to interact with Kender, about how it is different from what therapists and teachers would do in school.
My primary, overriding philosophy with my kids these days is to let them be themselves as much as possible. I am here to act as a guide, a resource for when they have questions, a role model as much as I can be, a safety net if they stray unknowingly into danger. My kids amaze me with how much they manage to learn and grow on their own, outside of formal “school lessons.” I want to encourage that as much as possible.
With Kender, I try to do the same thing.
As I discovered my own Aspieness as an adult and my daughter got her diagnosis, I reached out to connect with other adults on the spectrum. The groups that I found were open not just to those of us who mostly “pass” but also to those who will never pass in real life, the non-verbal, stereotypical autistics. In between were some who may have been more severely impacted as children but who now can “pass” or come close to it. Those who were diagnosed as children had the most interesting stories to tell. Over and over, I heard tales of what it was like to go through typical autism therapies from the viewpoint of the autistic, rather than the parents and teacher. I heard about overwhelming stimuli, about Pavlovian training regimes, about what it was like to figure out how to put on a mask for the therapists and parents and teachers until that mask got stuck in place. I heard about what it was like to move into adulthood with that mask on, only to discover too late that it was suffocating, burning, melting the real face, the real spirit, beneath it. I heard about the meltdowns, the PTSD, the traumas that would come to the surface in adulthood, causing breakdowns, interfering with real life as these people had to relearn how to interact with the world all on their own. All in the name of making sure that, as children, they didn’t look and act differently from the other children.
I don’t ever want to do that to Kender.
So I work with him in my own way. I listen to him. When he doesn’t want to be guided into an activity hand-over-hand, I don’t try and force him to accept it, as the therapists wanted us to do. I wait until he is ready. Over time, I have learned how to get Kender to engage in activity on his own terms. Usually it means getting the activity out and waiting for him to come to it. It means playing with the toys ourselves, and letting him observe what we do. It means turning a book into a song, playing with the song, and then bringing him back to the book to see that the song is on the paper, too. It means accepting his desire to play with a toy in the “wrong” way, finding out why he plays that way if I can, and building on it.
When Kender is trying to escape a situation, especially as he gets older, I let him wander for a while. When we go to park days and Kender needs to leave the noisy playground for a quieter place, I let him head off down the trail into the woods, following a distance behind, keeping him within sight but not interfering. If he heads toward a parking lot or street, I move to stand in front of him. I try to redirect him with open arms, ready for a hug or a cuddle. At Foster, I bring him back to the room, but I try to encourage him to walk on his own, rather than pick him up and carry him. When we come back, if he wants to go hide in a cabinet, I let him. I know that’s where he feels safe.
I talk to Kender the same as I talk to my other children. He can’t talk back much yet. He is non-verbal, although he has words for concrete things. He can say, “Can I have some blueberries?” but he can’t say, “My tummy hurts,” or “Yesterday I had pizza for lunch!” or even “My name is Kender.” I pretend he can, though, and I search inside what he does show me for clues to the words that are stuck in his head. When I tell him I’m disappointed in his behavior, he will get very quiet, and sometimes plant a kiss on my lips (usually he goes for cheeks) to say he’s sorry. When he’s happy, he will bounce up and down and flap his hands, run off into another room and do a circle or two before coming back. When he’s bored, he throws things down the stairs (and I remind him that I would rather he found another way to make loud noises!).
I’m not perfect. There are days when I think that one more minute of his loud “Aaaaaaaaaaaaaaaah!!” sound will drive me absolutely bat-crazy. There are times when I hurt so much that I can’t do anything more than pick him up and bring him back to where the rest of us are. He’s not perfect. There are times when he gets sent to bed because he won’t eat his dinner, when he gets a time out for hitting or breaking or hurting somebody or something. He’s a child, and children get into trouble. I’m a human, and I lose my temper and get frustrated.
I didn’t care that he was spinning the wheels on his trucks as a 3-year-old instead of running them along the ground and making engine noises. He got there in his own time. I don’t expect him to stop flapping or rocking or humming just because they make him look different. He’ll stop if and when he doesn’t need them any more, when he discovers how to self-regulate and why this will be a good thing. My goal is not to force him to move at a faster pace, so that he can look and act like his age-peers. My goal is to support him and keep him safe while he finds his own path for dealing with the world, so that when he gets to the point of being an independent adult capable of making his own way, he comes there knowing exactly who he is, with the self-awareness and understanding he needs to adapt to new situations, without the trauma of trying to live up to others’ expectations.
When I was putting Kender’s Match Video together, I worried at first that we hadn’t caught enough footage on meltdowns. When I thought about it some more, though, I realized we don’t really have that many. The meltdowns don’t feel like the biggest problem to me, like they seem to be for some families. I think one reason for that is not pushing Kender past his limits just to force him into a mold or into our comfort zone. I try to listen to Kender and meet his needs before he gets to the point of a meltdown, and I will remove us from a place or situation early if I can in order to avoid it.
In some ways, maybe, our path takes more work. We work hard to understand, we shape our lives around his needs to a certain extent, we try to decipher what’s going on in his head. But mostly I think it’s less work. The path I’ve chosen to take with Kender, as opposed to the path I saw therapists and schools laying out for him and children like him, it’s like the difference between industrial farming and sustainable agriculture. One produces faster and higher-volume results, but it takes a large amount of outside inputs, produces inferior products, and over the long term ruins the land through pollution and nutrient depletion. The other takes a different kind of work up front, but it builds a strong, self-sufficient ecosystem, rich and varied, capable of taking the natural inputs of the world and producing a rich result, again and again and again for a long time. It might not be as pretty. It might not fit in a mold or take the best advertising pictures. But it is healthy, strong, and nutritious.
I’m in therapy right now with this exact issue as one of the major points I’m trying to work through– and the biggest emotion I’m having come up is betrayal. As in /how could my parents have possibly done this to me/? I wasn’t diagnosed as autistic and forced through therapy as a child, but there was a lot of suppression going on.
It means a lot to me to read your blog, see you talking about doing things differently. Better, in my opinion. Kender is lucky to have you.
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