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.
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.
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.
