A few weeks ago I came across a post on one of the autism yahoo groups that really moved me. I got in touch with the author, Kyra, and asked if she would be willing to reproduce it for my blog. I’m very grateful that she agreed. Kyra's main autism intervention has been RDI, which she now augments with strategies from the Nurtured Heart Approach and from Collaborative Problem Solving. In the words of the inestimable late Bernard Rimland........'do what works!' This combination certainly seems to be working for Kyra and her family.
In the text, Kyra is in black and commentary from me is in blue.
In the text, Kyra is in black and commentary from me is in blue.
First, here’s a little information about Kyra and her family.
Kyra Anderson is a homeschooling mom to an only child, an almost 12-year old boy who she used to refer to by the nickname Fluffy until it began to sound just too darn silly. She now uses one of his real nicknames, Tito. She started homeschooling when Tito had to leave preschool for aggressive behavior which prompted the testing which led to the diagnosis of Asperger's when he was not yet four years-old. She did RDI for many years, and is a proponent of social developmental approaches rather than behavioral approaches. Her main 'intervention' if you can call it that, for the last more than four years has been using and modifying the social curriculum of Nurtured Heart with the amazing work of Rebecca Klaw (her training DVD is amazing) and more recently, the tools she's learning from the Collaborative Problem Solving. Over the years, Tito did OT, specifically astronaut training, the listening program, and other specific sensory integration therapy, and HANDLE. These days, she tries to get him to do regular exercise, both indoors, and (shudder) in the great outdoors.
Here’s Kyra and Tito’s recent triumph……..enjoy!
There’s never a time when we are doing only one thing to support Tito. It’s an assortment of things that mix, in various ways, with his resilience and flexibility that comes, in part, from cyclical fluctuations which are affected by states of wellness, amount of sleep, types of food, time of year, cycles of the moon, not to mention my moods, Dave’s moods, the weather, and who knows what else.
It’s hard to know what specifically is helping these last few months, but I think I can point to two things: 1. Neurofeedback and 2. Our parenting style, i.e., paying attention to how we deal with the difficult moments. As to 1: Tito started neurofeedback at the end of October. And 2: Dave and I found the Nurtured Heart Approach, our main parenting tool, over four years ago. We’ve gone through periods of being terribly proud of ourselves for how well we’ve stuck to our main goal to NOT energize the negative, and periods where we, miserably, fell far short. Overall, I’d give us a B.
What’s helping lately is the mindset: Kids Do Well When They Can as opposed to Kids Do Well When They Try. The former is at the heart of the Collaborative Problem Solving method (CPS) outlined in the book, Treating Explosive Kids: The Collaborative Problem Solving Approach which expands on the philosophy and work from Ross Greene’s, The Explosive Child. That phrase has become my mantra.
One morning a few weeks ago, after playing with his Dad, eating breakfast, brushing teeth and getting dressed for the day as he does every morning, Tito suddenly became exhausted by the notion of doing anything at all except having his computer time. We were about to do the morning chore (Tuesday = fold and put away laundry), after which would come lessons, lunch, and finally, his (beloved!) computer time. You’d think I was siphoning his blood. He flopped on the floor, rolled around, picking up stray items and immediately dropped them as if his very arms were rags, saying he couldn't fold, he didn't have the energy, etc., etc.
I could feel myself getting tense, the nervous voice in my head whispering, Oh no, here we go… but I grabbed hold of my thinking and tried to model flexibility.
“Well, why don’t we do some exercise first, to build up our energy?” I said.
He thought it sounded okay, but as soon as I put on the Just Dance Wii that we both love, he was stumbling around like an elephant, bent over at the waist, bumping into me, saying no, no, he didn't feel like it! he couldn't! and was soon back on the floor in the pile of clothes where he writhed and said a few more things that made it clear, while he didn't have the energy for folding or for lessons, he might find some energy if he could just have computer time first.
Now, here was a perfect example of what someone might say was a kid who simply didn’t want to do the stuff he didn’t want to do, a matter of a kid who could do better if he only tried. I could have gone there. In fact, there was an odd sort of lure to go there. Instead, the mantra popped into my head. I allowed myself to believe that he would rather be feeling capable and cooperative. I knew I wasn’t going to just let him have computer time right at that moment. I knew I wasn’t going to skip chores or lessons for the day. But I didn’t know how the whole thing would unfold, so to speak.
For me, for us, it’s all about energy. Not to sound woo-woo but that's just the way it is. Clearly, he needed some help from me, some support, in order to get passed this thing, to get over the wall of whatever was holding him back.
“Well,” I said, “we need to get the chores and lessons done before computer time. And I want you to have your computer time. So we'll just have to figure out how we're going to do that.”
He didn’t answer, so I walked away to do a few things elsewhere, making sure he knew I wasn’t upset, that I wasn't storming out in annoyance. That gave him time to be with himself and not feel pressured or worried about my being mad at him. And it gave me time to do some other things and to stay regulated myself. When I came back in and sat down nearby, he said the most remarkable thing.
“Mom, I hate when this happens. I can't tell if there's something really wrong, like I might be getting sick, or if it's just that I don't want to do the stuff I don't want to do.”
“Wow! That is so perceptive!” I said. “I feel that way in my own life sometimes.”
“Yes,” he continued. “So, if I don't do my chores and stuff and I'm really just trying to get out of doing the stuff I don't want to do, that's a bad lesson for me. But if I really am not feeling well, it would be the right thing. It's so hard, Mom! I hate when I feel this way!”
I energized him for talking about it all so well, with such clarity and honesty and self-awareness. I told him I totally got it, and that I also wondered which it was sometimes with him when he's in this sort of place, that I don't want to teach him that it's okay to skip out on the stuff he doesn't want to do but I also want to understand what else might be going on that's causing the resistance. We sat there in silence for a moment.
“Mom. I wonder. I wonder if my unconscious is doing this to me because this afternoon is the social coaching group and last week I had a really hard time there. And I'm worried about how it will be today so I'm not sure about going and that's making me upset.”
It blew me away. I had just, moments before, had the same thought. I wondered if he was in a dark cloud of worry about the upcoming group meeting without really knowing it. He knew I had called his teacher to talk about the issue from the week before so I asked him if he'd like to know a bit about what was said and he said yes which initiated the most amazing conversation. It greatly relieved him, and before you knew it, he was happily and cooperatively and energetically folding the laundry while we talked about the brain and regulation, about things that make it hard for people to stay in balance, things that come both from inside and outside, things that are both physical and emotional. He really got it. “I feel like I’m getting more connected” he said with a satisfied sigh.
When we were done, his manner and mood were completely transformed. He jumped up, grabbed a pile of dishtowels to bring down to the kitchen, darted back in moments later to pick up another pile. “Mom!” he practically sang. “I feel happy! I feel so good about myself!”
When I am in the Kids Do Well When They Try, I close down. Tito can feel the difference. He just can. He may not always be able to articulate it but he doesn’t need to; I can see it and feel it. In him and in me.
When I am in the Kids Do Well When They Can, I am softer inside, and grounded in my belief in my son’s underlying good intentions. I can respond to his resistance (and he can be remarkably resistant!), his avoidance and arguing, in a way that doesn’t escalate the situation. I’m in my scientist mode, investigating (internally) what might be going on, practicing curiosity rather than practicing annoyance or anxiety. I know he feels better when he does well, when he follows the rules, when he hangs up his coat, puts his shoes in the cubby, cleans up his toys, sets the table without being told many, many times. I see it in every aspect of his manner, including what he actually says. I know he wants to be, and feel, successful. I want the same thing for him. I want the same thing for me.
I so identify with Kyra here. One of the most difficult things for me in trying to support Philip has been to stay regulated myself when he gets stuck in negativity. It will be hard for parents of typically developing children (and for parents of children with autism whose children don’t have the kind of autism profile where negativity can sometimes feature heavily) to get into our shoes here and really understand what a huge impact this can have on a parent. It can really, really drag you down. Sometimes when this happens for us, I can get very stuck – not necessarily on feelings of frustration but on feelings of desperation. I don’t know what to do and I just can’t see a way to help Philip out of it, but I so don’t want him to go into the negative spiral because I know how soul-destroying that can become for him. My own feelings of desperation and helplessness start to close down my ability to identify different options for solving the problem or even looking at the problem from a different angle. It’s kind of a vicious circle.
I love what Kyra did here when Tito got stuck. She took a ‘collaborative problem solving’ approach when she said:
“Well, we need to get the chores and lessons done before computer time. (Define the problem)
And I want you to have your computer time. (Empathy)
So we'll just have to figure out how we're going to do that (Start the process of identifying options for a solution – together).”
Then she walked away calmly and got on with other chores – leaving Tito space to think and giving herself a few minutes to gather her thoughts and contain her emotions.
She preceded this with mindfulness – being self-aware enough to realize that she was getting tense and anxious in anticipation of a potential power struggle. She describes ‘the nervous voice in my head whispering, Oh no, here we go…….’
This is the crucial point I think – if we can catch ourselves at this moment and tap into the emotional resources that enable us to stay calm and flexible, then we have a much better chance of a positive outcome.
Sometimes it’s not possible to tap into these emotional resources. I agree with Kyra’s opening statement – that our ability to remain calm in the face of a challenge is affected by states of wellness, amount of sleep, types of food, time of year, cycles of the moon, not to mention our moods, our partner’s moods, the weather, and who knows what else.
But Kyra got there……and what an outcome she and Tito had….…it blew me away JJ
It seems that Tito was preoccupied by his anxiety about the afternoon’s social coaching group and that this anxiety knocked his psychological balance and eroded his motivation to engage. Fostering and sustaining motivation in children with autism who have impaired resilience....for some of us, that is our biggest challenge.
Leaving Tito alone (and crucially, in a state of mind that wasn’t encumbered by his Mum’s feelings of anger, disappointment, frustration etc.) allowed him time to have his own reflections. Initially he was able to identify that he was demotivated but didn’t really know why. He observed that he’s felt like this at other times and Kyra validated his feelings (more empathy) by sharing that she too sometimes feels like this. Then Tito was able to think about why he might be feeling out of sorts and even to pinpoint the exact reason….what a watershed moment this was for him:
“I feel happy! I feel so good about myself!” It gives me Goosebumps every time I read it.
I don’t think I need to say any more here except a really BIG thank you to Kyra for sharing her magic with us.
You can read more from the awesome Kyra here.