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Professor Temple Grandin, perhaps the best-known person with autism next to Rain Man (who, I remind you, was a made-up character), once commented that we need to keep the lives of our autistic kids interesting. I have pondered this many times over the years, agreeing with her that presenting new and exciting adventures to Joseph keeps him interested, engaged and challenged.

But when your kid has anxiety — which is extremely common for people with autism — it has to be looked at slightly differently. bell-curveOur RDI consultant once drew us a bell curve like the one to the right. The line in the center separated the two sides. To the left he wrote “Productive” and to the right he wrote “Unproductive.” There is a point, he explained, where challenge simply becomes unproductive. While you don’t want to make Joseph’s life too cushy (too far left), you also don’t want to immerse him in events that produce unproductive anxiety (right).

But anxiety is unpredictable and often irrational, so you don’t quite know what is going to push someone over the edge. Like last week, for example…

We went camping. Fun, right? Blue Eyes and I both come from camping families and we have wonderful memories of the adventures we had on those trips. Joseph was excited: we camp every year for a few days so he knew, more or less, what to expect. Blue Eyes had even fixed up our relic of an RV, and we took that along (I happily spent the nights in a tent next to them.)

anxietyThe first morning, anxiety struck. Why? Who knows. Dogs were leash-only, so that was okay. Maybe being out of the routine? Somewhere new? We were in Lassen National Park: Volcano territory. Like a volcano, Joseph’s anxiety built up and exploded out – hot, fierce and uncontrollable.

What we forgot since we last went camping is that campgrounds provide a great view into other people’s lives. There is nowhere to hide a kid who is loudly expressing his fear, resistance and anguish. Think humiliation.

On the other hand, other people couldn’t hide either. We watched happy families with excited kids who were loving — and making the most of — every minute of their camping experience. Living so openly, side by side with typical families, really got to me for a while there. I felt terribly sad.

By the third day of some difficult times, Blue Eyes had a brilliant insight: Part of Joseph’s anxiety had to do with the structure of the day. If we’d done a morning hike and returned to the campsite for lunch without any particular plans for the afternoon, this was perceived by Joseph as a high-stress situation. Whereas Blue Eyes and I looked forward to a few empty hours, our kid did not. He’s not like this at home, but we had to roll with what was happening there. It worked to say, “Let’s take half an hour to rest and then go for a bike ride.” It didn’t work to say, “Let’s do whatever we want for the afternoon.” This helped. A lot.

Looking back, I don’t think I handled the anxiety well. I was irritated. I hated that others could see and hear our troubles. Why couldn’t Joseph just reason himself out of this? Why was he behaving in such a ridiculous way?

But the beauty of reflection is the learning that comes from it. I don’t fully understand Joseph’s pain and I doubt I ever will. But rather than judge him (to take another view of the bell curve: unproductive behavior), I want to feel compassion for him and support him (productive behavior). We are going to get to work on this anxiety, starting with an Ayurvedic specialist who focuses on kids with anxiety.

During one of the low points of the camping trip, Blue Eyes pointed at our sweet dog and said, “That’s our gift.” Then he gestured toward Joseph (who was out of earshot) and said, “That’s our work.”

Paramhansa Yogananda, in a letter to one of his devotees (though I think in actuality all of his devotees), said,

Everybody’s difficulty is different and he or she has to win that test of karma…I will never give up my job about you….Not only will I ever forgive you, but ever lift you up no matter how many times you fall.

This, I believe is the work of us parents, especially those of us with special needs kids or rebellious kids or troubled kids. Our kids come in with their own karma and their own tests. We can’t change that, but we can let them know that we won’t give up on them. We will ever forgive them, ever work with them, ever help them to be all they can be.

Dang, it’s hard. But here I lean on Yogananda again, with these excerpts:

I shall ever be with you and through Divine Mother guard you from all harm, and will constantly whisper to you guidance through your loving self.

So do not become discouraged and tired…

A smooth life is not a victorious life — and I will give you lots of my good karma, so you will get through.

…not only will I invisibly help you but visibly, through many here.

IMG_1977Opening to receive that good karma. Exhaling a big exhale and allowing my own anger, resistance and anxiety to dissolve as I remember, yet again, that this work is much greater than just Blue Eyes and me. The Universe offers unlimited support, if only I allow it in.
Blessings.

All things in this world are impermanent.
They have the nature to rise and pass away.
To be in harmony with this truth brings true happiness.
— Buddhist chant

The path of yoga teaches us to accept both the good and the bad with even-mindedness. We are reminded that life is like the ocean, and we learn to surf the waves as they come — big treacherous ones, tiny smooth ones, and everything in between. Identify with the unchanging ocean, the masters tell us – not with the waves. The waves – life itself, and all that transpires with it – are temporary.

I think about this not only when life is rough, but also when things are good. Like now. Joseph has suddenly shot forward in his development. Things I’d given up on are things he is now doing. Little things that are big things, like untwisting a twist-tie on a bag and then twisting it back up. Or tying his sweatshirt around his waist by himself. Starting a zipper. Calmly maneuvering his way through crowds. Riding a bike. Making a friend. Enjoying a birthday party without panicky nervousness ahead of time. Going to the big Thanksgiving gathering and leaving me to sit and watch the game with the guys.

Early on in this autism journey I learned that, according to child development, a kid cannot jump from A to Z. So if (or shall we optimistically say when) a kiddo achieves some recovery from autism, s/he has to go back to where they left off and build from there.

playing with dollsI wonder if that’s what’s happening as I watch Joseph play with dolls. In the past dolls have figured a teeny tiny bit in his play, like a random person on a train, but the important thing has been the train rather than the person. Now the play centers around dolls and dialog. Oh, they do some interesting things, like go for rides in shoes, but the most important thing is the interactive relationship between the people. With dolls and many other things, Joseph is playing in ways he’s never played before. And trains — the years-long obsession — are way in the background.

All of this is amazing progress. A few important things happened almost at once, and I think they helped to bring the surge about. For one, the family whose two kids stayed in our guest house for a couple of months and played with Joseph a lot. For another, a 23 yo nephew who came to stay for the last three months and took on the big brother role, like getting Joseph on skis for the first time. The social skills group Joseph is in. And his own maturing process.

Now the family is in their own home and our nephew leaves today. The social group continues and I hope and pray that Joseph’s developmental surge does, as well. But will it, without the people stimulation he’s been surrounded with lately? Sigh. The yogi part of me knows that everything is always changing, rising and falling like the waves.

So I breathe in gratitude for what is now. And I breathe out the attachment, the wanting to hold it this way. It is so not in my hands, and trying to make it mine is a sure way to make myself miserable.

After all, the God who brought all these ingredients together at the right time is the same God who is now removing some of them. If I trust in the one, it behooves me to trust in the other.

Here I am again: face to face with trust, and with the lack thereof. I know better (sometimes) than to trust my thoughts — haven’t they let me down over and over again? Even people, as lovable as they are, are subject to whims and wiles and unpredictability. So what, or who, can we trust?

In yoga we have the concept of sankalpa, which means will, purpose, or determination. It’s a way of harnessing a positive purpose, kind of like a New Year’s resolution. My sankalpa right now is that I trust the process to mold Joseph, and me, exactly as we need to be molded. I trust that God’s hand is firmly in it, and I trust God’s timing.

Then I remember. It is worth saying it twice in one little post:

All things in this world are impermanent.
They have the nature to rise and pass away.
To be in harmony with this truth brings true happiness.
— Buddhist chant

We’re not necessarily doubting that God will do the best for us; we are wondering how painful the best will turn out to be.
~ CS Lewis

Painful is how I would describe life as an autism family. I hit bottom around the pain (again) just over a week ago. Joseph is nine now, and the sweet, cheerful little boy has been taken over by a rebellious, yelling, smart-ass, sometimes hitting kid who is almost as tall as I am.

Forget the blues: I had the blacks. I felt swallowed up by a deep, dark hole of despair. Bruce Springsteen sang in my head: “Had a wife and kids in Baltimore, Jack. I went out for a ride and I never went back.”

That’s what I wanted to do. Sometimes I wanted to take my husband with me and sometimes I didn’t, but I definitely wanted to ditch the kid. Hop in the car, drive away and never come back. Such a sense of freedom, of liberation, that thought gave me.

Well, on Thursday I did hop in the car and drive away, but it wasn’t quite that dramatic. I was only gone four hours and my friend, Terese, did the driving. It was where we went and what we did that made the all the difference.

We went to session one of a five-week Love and Logic course.

In this classroom, other parents were struggling. Not only parents with autistic kids, of course, but all the parents. Two of the kids were getting emergency crisis intervention. One girl had just called her mom a fat pig who didn’t know anything. Another was getting cyber-bullied. I heard stories that made my curly hair straighten.

Then — ah, then! — we were given tools. It takes two to engage in an argument, we were reminded. If you’re playing tug of war with your kids and you let go of the rope, the game is over. We were taught how not to engage in shouting matches, in power struggles, in efforts to control. And to do our part with love and empathy.

We were reminded — and this one was huge for me — that the reason we decided to have kids was because it would be fun. Raising a family is meant to be fun. AND kids need to make contributions, just like Mom and Dad do. Though Love and Logic doesn’t often use the the word responsibility, it includes everyone doing their part.

On Friday, Joseph and I were talking about lifeguards. Joseph is very interested in lifeguards and the rules around pools. He asks questions like, What would happen if I ran at a water park? What if I was rough with a little kid at a public pool? I was answering logically, saying that the lifeguard would get him in trouble. If he was really naughty, I told him, he’d probably have to leave the place.

Well, this got Joseph anxious and he started to yell. Loudly. And rudely: “STOP TALKING ABOUT LIFEGUARDS! I DON’T WANT TO HEAR ANY MORE ABOUT LIFEGUARDS!”

The old Yoga Mother would try to calm him down. Or maybe even yell back at him. The Love and Logic mother, though, immediately and intentionally went brain-dead. This brain-dead moment stops me from reacting, gives me a second to reclaim my center.

Then I didn’t say anything. I could have used one of the many brilliant Love and Logic one-liners (“How sad.” “Don’t worry about it now.” “I love you too much to argue.”), but it’s much more natural for me, with my yoga background, to exhale loudly. Not sarcastically, not meanly –just a loud sigh.

And that was it. With my sigh I let go of the rope, and the conversation was over.

Replay scenes like that a dozen times a day, and you’ll get a sense of how Love and Logic is impacting our lives.

I’m realizing that I’ve been too flimsy around the boundaries, not modeling the calm, centered person I want him to become. Acting more like a drill sergeant (“Clean this up! Now!”) than a consultant (If it was me, I’d do it this way — but it’s your choice.).

What I know for sure is that it hasn’t been much fun. And now it is again. The autism is still there, but I’m realizing that we can have fun anyway. Saturday eve we went to a waterpark — what a blast! Yesterday we went on a hike with friends, and Joseph copied his younger friend by crossing funky, shaky bridges over the creek without fear. A new milestone for my usually timid young man.

IMG_2745Bottom line? I believe God wants us to have fun. It adds such a richness to life, and then we get to share that joy with others. So what the hell, let’s have fun — and, if we’re not, let’s figure out why and make the changes needed.

It’s funny, in a way. If we hadn’t lost our RDI Consultant, I don’t think I’d have taken this Love and Logic course. John was such a strong support for me that I would have struggled gallantly on. But with him gone, I’m having to fill in the gaps — and it’s turning out to be really good for me, for us.

Even lower bottom line? Even though, as CS Lewis said, God’s best is painful, it’s important to remember that it’s also the best.

Have you noticed that it’s easy to trust when everything’s going well? That’s when you feel there is a loving God. That’s when you know the Universe is on your side, and you are in the “zone.” Then — LOOK OUT! — a wrench gets thrown in the works. And suddenly God is not so loving, the Universe is out to get you, and that zone is some far-off place that has no relation to you.

Welcome to my week.

Blue Eyes and I have been quietly celebrating a thinning fog in Joseph’s brain. No one other than his mother(!) has ever called him smart before, but in the space of a few days one of his teachers told me he was intelligent, and another said he was obviously smart. This is, I believe, a direct result of that thinning fog. Joseph is thinking more clearly, speaking more lucidly, and understanding more quickly. So yeah, that loving God was showering his favor on us.

Then came not one, but two, wrenches.

First was our beloved RDI Consultant. He has a disability that he has courageously battled since he was a child. He called the day before our consultation to tell us the disability was looming large in his life and that he needed to go for some major surgery. Said that this may be the end of his role as a Consultant.

If you haven’t had someone come in and make a huge difference in your autistic child’s development, you may not get the impact this had on me. First I cried. Then I prayed — hard — for trust.

Oy. Trust. My whole life I’ve had a hard time trusting God. Trusting that there is some grand plan in execution beyond my limited vision. So I cried and I prayed and I cried and I prayed.

A few days later, I heard Joseph in his room at 4am, crying. When I asked him what was wrong, he said his left leg was killing him. Blue Eyes woke too, and together we massaged his leg, gave him pain killers, applied heat, and tried whatever else we could think of to help ease the pain.

Joseph was in agony. He couldn’t get off of his bunk bed, so Blue Eyes had to carry him down, Joseph screaming with pain. We had a trip to the doctor’s, a trip to the hospital for x-rays, and a later trip to the hospital for an ultrasound that evening. In between visits Joseph (and I) cried about this mysterious, vindictive pain.

I had to drive directly from the evening visit to the hospital to meet someone for a work consultation. My head was NOT in the right space to meet with this man, and I didn’t do my best work. So I’m driving home, completely exhausted, and — guess what? — praying, once again, for trust.

That’s when God spoke to me. This, s/he said, is how one builds trust. Facing frightening challenges and actively trusting again and again. Day by day, or moment by moment.

Then the radio started playing  a song:

Strength will rise as I wait upon the Lord. Wait upon the Lord, I will wait upon the Lord.

Whatever caused Joseph’s pain, it has cleared up now. The tests found nothing. The doctor is guessing a twisted muscle.

Whatever else it was, it was also a  great gift for me. In the hospital waiting room that morning, I felt an overwhelming urge to let all my girlfriends know what we were facing. So I texted them. They responded with moral support, practical help, and many prayers. I thought back to seven years ago, when we got the autism diagnosis and I told almost no one. I was not ready to ask for, and receive, that much help. I was not ready to be so vulnerable.

love GodKahlil Gibran says that, even as love is for our growth, so it is for our pruning. The journey of autism has pruned me — cutting off everything that was not essential so that newness could grow and flourish. Now I can say, help me! I can lean on others when I am not strong.

And a loving God, a Universe that is on my side, and a zone that is readily accessed with an open heart are all reminding me that I can relax. All is happening as it’s meant to happen. I don’t know what that is, but for my part, I can trust.

More and more, I can trust.

We have friends whose daughter just went in for emergency surgery. Annie had a melon-sized growth in her torso that the doctors removed, but along with the growth came a large amount of muscle mass that she will never have again. Annie has been an active, vibrant young woman, and her life will never be the same.

Annie’s mother spoke tearfully about it to Blue Eyes today. She said, “You guys have been through a lot with Joseph – medically, emotionally, and otherwise. How do you do it? How do you bear it?”

It’s a good question, and one to which there is no simple answer. But in this post, I’d like to explore how a parent bears it when their child is limited or in pain.

Right off the bat, I’d say it’s a journey, not a destination. I’ll go weeks where I’m feeling okay about having a kid with autism. I’m pretty sure I can handle it and, even though it’s got its rough moments, we are navigating our way through.

Then something will happen. Maybe I’ll spend time with my friends, for instance, who have neurotypical children. To me these kids seem always up for an adventure, whatever it may be. They run over to grab my hand and engage with me. They are – well, the way I think kids should be.

Did you hear that word I used? Should. Should can get a person in a lot of trouble. I start shoulding all over myself. I touch in yet again to that sad, tender place inside that wishes – oh, wishes with all my might – that my life was different. That I had one of those other kids. That feels I should have gotten one of those kids instead of the one I got. Or, at least, since I got one with autism, that I should be able to handle it better.

Wheeeee, off I go into a downward spiral. Oh, and by the way, I shouldn’t be going into a downward spiral.

It’s the mind trips that kill you. Future tripping, past regretting, if onlys, shoulds. It’s the comparing mind that looks over there instead of focusing on the here.

All that stuff — mind tripping, comparing, etc — they all lead to pain and suffering. There is nothing else inherently causing my pain. I have met the enemy, and it is me.

I pray. I cling to the robe of the Master. If I can’t find it in me to open to God, then I find my breath. I breathe, slow and deep. What I love about the breath is that it’s always in the present…you can’t breathe in the past or the future. So being mindful about the breath gets me back here. It lessens the craziness of my mind.

I remember that this journey is a marathon, not a sprint, and that I need to pace myself, even take time out sometimes. I remember what a wise friend told me: one has to learn to trust even when in pain. So I renew my trust – again and again and again.

There is so much more going on than I can see in my little perspective. If, indeed, God is a just and loving God, then I have to trust that what’s happening is supposed to happen. My son has his own life lessons, his own karma. That part is out of my control. For my own sanity, I must let go of what’s not mine and give what’s God’s back to God.

Perhaps the last way I have to bear it, but so very much not the least way, is friends. When I can’t take another step, my friends hold me up. Sometimes it’s just a phone call to another autism mom to say, “Hey, it’s rough over here. Talk to me.” Sometimes it’s a heart to heart with lots of tears. Whatever form it takes, it’s a sweet balm.

Autism parents, we are not in this alone. We have each other – and, even if it’s just through the internet, we can lend a virtual ear, a shoulder, a word of wisdom.

At some point, the downward spiral changes direction. Coming back into the here and now, I breathe a prayer of gratitude for what we have, for the challenge we’ve been given to grow through, for the chance to breathe the air of this earth.

And once again it hits me that it’s not about waiting for the storm to pass. It’s about learning to dance in the rain.

Just for today, then, I’m going to dance. Letting the cold, wet stuff from the heavens fall all around me, I’m going to celebrate all that is, all that isn’t, and all that is yet to be.

He’d been watching them closely, like he watched most people. Standing just beyond the quickly-flowing current, he’d observed the kids on the play structure. Climbing up ladders, sailing down slides, zipping across the shaky bridge, gliding down the pole. Finishing on one side and running around to the other to do it all again.

Mostly he watched the kids on the monkey bars. Day after day they’d climb the steps, grab ahold of the first one and then, bar by bar, swing their way easily to the other side. ‘Most every kid who tried was able to do it – and anyone who couldn’t simply dropped to the ground and ran to the other end to start over again.

He watched them all.

He had the idea to go down on a Saturday, when none of the other kids would be there. It was true: when they got there, it was just him, Mom and Dad. Well, over on the grass there was a man playing fetch with his dog, but that was far away.

He climbed the steps. He looked at the bars. They were high up, and there were a lot of them. He remembered the ease with which the other kids played on them. In his mind’s eye he saw the ones who’d gone across yesterday, at recess: Leah, Anthony, Jacob, Casey…

They were made of metal. The silvery steel reflected the sunlight. The birds chirped over by the trees, and the breeze blew softly on his skin. Above him the clouds floated across the sky. His parents stood a distance away, speaking quietly to each other.

Ever so slowly, he reached his arms upward. His hands opened, a new butterfly trying out its wings, and wrapped themselves tentatively around the first bar.

*          *          *

I wrote the above essay when Joseph started kindergarten two years ago. The intensity with which Joseph watched the kids on the monkey bars, and the need to try it only when he felt completely safe, really struck me.

For two years now, Joseph’s had a challenging relationship with the monkey bars. That first day he simply put his hands on the bar, but, slowly, he’s gone a little further. For about a year he’d put both hands on a bar and call it done. Then he began holding the bar, stepping off the ladder, hanging for a bit and dropping down. He continued to do this while kids years younger than him swung across with ease.

Here are two things I so admire about Joseph: he never gave up and he never got down on himself. If I’d been in his position, it would be a foregone conclusion that, if so many peers and kids younger than me could do it and I couldn’t, there must be something wrong with me. When I was in Girl Scouts we learned to sew, and there was one knot I just couldn’t grasp. In the Girl Scout handbook it said, Note: Handicapped children may not be able to learn this knot. Therefore, I was secretly convinced that I was handicapped. It took me years to get over that one.

Not my Joseph. Butterflies don’t get weighed down by much.

Yesterday the butterfly flew. He made it across those monkey bars, and back, and across and back, and across and back, a hundred times.

It seemed like he’d always been able to do it. And just as it wasn’t a big deal to him when he couldn’t do the monkey bars, it is also not a big deal that now he can. It’s fun and it’s great, and he called Blue Eyes to announce the fact, but it doesn’t define him as a person.

Wow. What a lesson for people like me. I mean, butterflies don’t think they’re worms because they haven’t yet flown. They stay present. They enjoy the breeze flowing by; they practice moving their wings. When the time is right, and only when the time is right, they lift off.

To every thing there is a season, and a time to every purpose under heaven.

Almost makes you trust, doesn’t it? 😉