climbingAfter all these amazing leaps in development, in the last few days Joseph seems to have taken a horrifying, frightening, quantum leap backwards.

We are seeing behaviors that we haven’t seen in so long we’d almost forgotten them: weird tracking with the eyes, autistic-like movements, shying away from other kids, a decrease in vocabulary.

This morning was the worst. He just screamed and screamed. It was as if he were in some inner pain or turmoil, but he couldn’t possibly communicate about it to us.


Note to self: Breathe. Don’t panic. Resilience, resilience, resilience.

My RDI consultant seemed to talk about resilience incessantly when we first got on board. I didn’t really know what she was talking about, so I’d nod and let her go on without paying too much attention. I was focused on trying to survive the torture of sleep deprivation and get a grip on what autism was. Who had time to worry about the concept of resilience?

It is my observation that survival comes before resilience on the life pyramid.

But as the survival part came more into balance, the concept of resilience started to take on some meaning.

According to Gordon (Confession: I don’t know who Gordon is. This is a quote I found somewhere on the internet.): “Resilience is the ability to thrive, mature, and increase competence in the face of adverse circumstances. These circumstances may include biological abnormalities or environmental obstacles… To thrive, mature, and increase competence, a person must draw upon all of his or her resources: biological, psychological, and environmental.”

Resilience is a huge thing in autistic children — or, rather, the lack of resilience. RDI maintains that, due to a major feeling of incompetence, these kids feel like failures from the get-go. It’s much easier for them to give up than it is to “thrive, mature, and increase competence in the face of adverse circumstances.”

Joseph, for instance, used to give up all the time. He’d give up on getting people to notice him or play with him, on understanding new concepts, on toys that were a challenge, and on trying new things.

He wouldn’t even repeat something when you hadn’t heard and asked him, “What?” He’d given up on communicating after the first round.

But I think that, while it’s paramount to develop resilience in autistic children, it is possibly even more important to cultivate it in their parents.

In the early days, we’d try to engage Joseph in something and, when he resisted, we’d give up. We didn’t have the energy or the motivation. We were scared of being failures. It was easier not to try.

The entire family was drowning in incompetence. No wonder our consultant wouldn’t shut up about resilience!

Eventually resilience turned up as one of our RDI objectives. I forget its official title, but the gist of it was that when my kid tried to get my attention, I was to turn away a number of times and he was to persist.

We tried and tried with this, to no avail. I will never, ever forget the day it finally clicked. Joseph was trying to get me to make this funny sound back at him. He made it over and over to me, even though I was turned away. When I finally turned to him and made the sound back, he laughed really happily.

What was it Churchill said? Never, never, never give up.

That goes for spectrum kids and us parents. Our kids need to know we will never give up on them.

And yet here are Blue Eyes and me, being stared down by an ugly regression. I have to ask myself, why is failure so bloody easy to give into? After so much encouragement with Joseph’s development, for instance, why is it so tempting right now to give up in despair?

It’s just a glitch, Yoga Mom — a tiny blip on the radar. In a week or two, you’ll look back and wonder how you could possibly have let your spirits sink so low yet again.

Tell me again, Gordon: to thrive, mature and increase competence in the face of adverse circumstances.

In other words, to keep on keeping on. To see life in the longer rhythm – the forest instead of the trees. To focus confidently on where we’re going and, since we’re not sprinting there, to take baby steps in that direction.

There is another side to this that must be mentioned. As a fellow minister once said to me, Satan loves it when we don’t ask for help. Now, whether or not you believe in the red man with horns, we can probably all agree that, when things get difficult, there is the temptation to sink down into darkness, depression and despair. And it’s so much easier to do this when we feel isolated.

I can pray easily enough, but it is not in my nature to ask another human being for help. In fact, I despise doing it — but this morning I called our naturopath. On a Sunday. And I cried on his voice mail.

Just that little phone call, even before he called me back, made me feel so much better. I guess part of the pain is feeling so very alone in all this autism madness.

*                                           *                                      *

Now it is nighttime. Joseph’s just gone to bed. Something turned for him this afternoon. Clark Kent stepped into the phone booth and, once again, Superman ran out. Suddenly Joseph is once again GREAT — funny, literally slapping my hand away when I tried to help him, coming up with more imaginative play than we’ve ever seen.


Let’s make a deal, shall we? Let’s never give up on our kids, and let’s never give up on ourselves. Let’s cultivate strength, courage and faith while it’s easy — so that, when it’s hard, these qualities will see us through.

And let’s have the vulnerability, the humility, to reach out to someone else — someone we can lean on when it’s just a little too difficult to stand up all by ourselves.