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As spring break loomed on the horizon, Joseph began asking about going to Arizona. He’d never been there before and he wanted to see Sedona and the Grand Canyon. He also wanted to see Las Vegas, which is on the way.

I had recently quit my regular part-time job and am hysterically happy about having spare time.  Blue Eyes was up for going, and we like to encourage adventuring in Joseph…so a vacation was born. We’d spend about a week and a-half driving to and from, and exploring the wild west.

Friends told us we would have a wonderful time. Arizona was one of their favorite places and it would be amazing. To most of them, I smiled and said I was looking forward to it. To one of them I explained that Joseph could have a hard time with change so it would probably be challenging. To Terese, who has an autistic kid of her own, I said that Joseph could be such a pill on these trips that it would no doubt be difficult.

Perhaps “a pill” wasn’t quite the right expression. Sleeping in new places is usually difficult for Joseph, going to new places (especially crowded ones) is difficult, and not getting his way is also hard. All three of which are happening on this trip to some extent. Add to this the fact that Joseph had recently finished a round of antibiotics and was displaying pronounced symptoms of autism and candida (much flapping, fingers constantly in mouth, etc), and we were headed for quite a time.

Yesterday was day three and was supposed to be “his” day. We had made it to AZ and had booked a train ride up to the Grand Canyon. Challenge #1 occurred when Joseph went to sleep late and woke at 4am, resulting in three straight nights of sleep deprivation. We arrived early at the depot to watch the cowboy shootout but, as soon as the first “shot” rang out, Joseph screamed and cried and would not be calmed down. Blue Eyes quickly ushered him out of the bleachers amidst the looks of curious families.

My impression of age 13 is that the volume’s been turned up big time. Joseph’s always been one for constantly making noise (“verbal stimulation” in the vernacular), but it’s really gotten worse lately. Walking around the incredible, breathtaking Grand Canyon naturally inspires a reverent silence — but my constant companion was a nonstop noisemaker which was, to put it mildly, draining. And disappointing. Yogananda used to say that, if someone got your goat, they got your inner peace — so don’t let them get your goat. Well, my goat went galloping down the canyon and I haven’t seen it since! So my disappointment was for both the experience of the canyon and in myself for losing that goat. ;-(

At one point, in a small crowd, a little chipmunk appeared. Of course everyone was thrilled to see the cute little guy. Everyone else, that is. Though he was quite a distance from it, Joseph started screaming in anxiety and the only way to calm him down was to find a quiet place in which to sit for half an hour.

I sound like I’m blaming Joseph but I also blame myself. Before the Grand Canyon trip, I forgot to pack nutritious snacks and had let him load up on carbs (hotel breakfast, anyone?). Things have been quite good with Joseph — many breakthroughs this year — and so I thought this trip would be easier than it is. I didn’t prepare myself for a difficult day, so the fall was greater. The idea that expectations set us up for being disappointed at some future point certainly applies here — but the expectations were so unconscious that I didn’t realize they were there until, well, now.

Speaking of now, it is 2:20 in the morning and I am in the hotel bathroom, typing away and dreading the fact that Joseph may wake up anytime and give us yet another difficult day, tainted by sleep deprivation. Is it an autistic thing that he simply can’t nap during the day unless he’s deathly ill? And if positive expectations bring future disappointment, what does dread bring? As my own private guinea pig, I hereby postulate the following effects of dread: Insomnia (did I mention 2:20am?), negative mindset, and separation.

Ah yes, separation. Where is God in all of this? Of course I know that God IS — but I’m not feeling the Love. What if I just take a moment to soften my body and open my heart. What if I close my eyes, take a few deep breaths and release some resistance.

Then I realize that the thoughts are not my thoughts. They come from I know not where and they go I know not where. They are there, but who I AM is something much greater.
Jaw softens, shoulders drop. Heart remembers.

And then, oh gloriously then, there it is: The felt inner communion. The spaciousness of Spirit, more breathtaking than any grand canyon. A shared silence filled with understanding and even amusement. A remembrance that this is just a tiny blip on the radar of life, and especially of life beyond. The reassurance that always, always I can come to this place – no matter what is happening externally. In this I can rest. Time to go back to bed.goat

Hello, little goat. Welcome home.

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School psychologists through the years have warned that, as Joseph grows in awareness, autism will get him down. They’ve predicted insecurity, incompetence, depression, anxiety, drug addiction and suicidal tendencies. Whether due to a lack of awareness on Joseph’s part, a reasonable ability to overcome challenges, or his supportive school/social environment, we haven’t seen this happen.

I strongly dislike these dire proclamations, but despite that, some underlying part of me has been on the lookout for their emergence.

At the moment we are face-to-face with something that could bring it on:

Basketball.

Not the lovelpinnoccioy, slow, supportive basketball for kids of all abilities that Joseph’s participated in previously. Like Pinnoccio he wants to be a real boy, and that means school basketball with typical kids who have typical executive function and motor skills. And not young kids, either: 6th-8th graders only.

Joseph is on his second week of practice, and yesterday Blue Eyes showed up 15 minutes before it ended to watch. Picture it, if you can: ten kids playing fast, dynamic basketball and our Joseph standing out on the edge, his body turned partly away from the kids as if to block out such rapid-moving action. He sees his dad, runs to him and says, “Let’s go straight home!”

Ugh. Is this the time when he sees that he is not like the others, will never be like them? Is this when self-doubt and low self-confidence start their evil, insidious path inside Joseph’s head and heart?

“You’re being way too dramatic,” I tell myself. “Everyone has things they can’t do. It’s time he found some out.” I myself was lousy at group sports and swore it off without a complete breakdown. But what if, what if, what if this is the thing that cracks the lens and suddenly Joseph can see how his disability limits him…not only in basketball, but in so many other ways. And then what if he looks to his future and suddenly his dreams of productive work and a wife and family — of happiness, for God’s sake –seems way out of his reach.

And if he wants to quit basketball, what do I do? Do I coach him that quitters never win and winners never quit? Do I teach him about executive function and the limitations he faces? Do we just gracefully bow out?

Perhaps it’s not Joseph those psychologists were talking about; at the moment it seems to be me drifting into insecurity, incompetence, depression, anxiety, drug addiction and suicidal tendencies.

Thank God for my spiritual foundation. At times like these I turn within, and Spirit brings to my mind a story originally told by the Buddha:

There was a Zen master who, while out walking one day, is confronted by a ferocious, man-eating tiger. He slowly backs away from the animal, only to find that he is trapped at the edge of a high cliff.

The tiger snarls with hunger, and pursues the master. His only hope of escape is to suspend himself over the abyss by holding onto a vine that grows at its edge. As the master dangles from the cliff, two mice – one white and one black – begin to gnaw on the vine he is clutching on.

If he climbs back up, the tiger will surely devour him, if he stays, there is the certain death of a long fall onto the jagged rocks. The slender vine begins to give way, and death is imminent. Just then, the precariously-suspended Zen master notices a lovely ripe wild strawberry growing along the cliff’s edge. He plucks the succulent berry and pops it into his mouth. He says, “This lovely strawberry, how sweet it tastes.”

Ah, the beautiful, lovely, amazing present moment. Nice to be back, where danger is no longer imminent and where I trust that, if I can stay open, I will be guided to say and do the right thing at the right time.

strawberryThis lovely strawberry, how sweet it tastes.

When it was really bad 7 or 8 years ago — when Joseph didn’t sleep and I didn’t sleep and we were socially isolated and our marriage was hurting and anxiety constantly gripped my heart — Blue Eyes dragged me to a doctor for my first prescription of sleeping pills. This doctor was a spiritual friend and, on follow-up visits to get more meds, he would recommend that I take time out. Specifically, a seclusion – a time of silence for meditation, reflection and rest. But Blue Eyes was working a lot, we had no family who would take it on, and I felt too panicked to entrust Joseph to anyone else’s care. Those were by far the toughest years of my life.

chakrasA few years ago, I started taking seclusion again. Not for a whole week like I used to, but for 2 or 3 days at a time. Seclusion is where I am now, in fact – sitting on the deck of a private cabin in a spiritual community, with a view of tall trees and hills and the melody of a river some distance away.

I don’t “do” much when I’m in seclusion; I become a human being instead of a human doing. I meditate more and my mind gets quiet. I feel my connection with all. I remember that I am a spiritual being dancing around in a human body for just a short time.

And of course I reflect about Joseph. Who we have now is so different from the Joseph of 7 or 8 years ago. All the work we did? It was so worth it. Teachers and school psychologists comment on how different Joe is from other autistic kids – they say they can see the results of that hard work. So can I. He will always have autism, but my hope and prayer is that it will be something he manages and something that doesn’t define his whole life. It looks like it’s headed that way. God willing, it will be.

Most autism parents don’t do the hard work. I can’t blame them: It’s HARD. You have to face the autism and your own demons about it. You have to give every ounce of yourself to it. You have to spend time (lots), money (lots), and energy (all). And then it’s a crap shoot, because maybe it will work and maybe it won’t.

Because I’m in that world I know a number of autism kids, and it’s obvious who has been worked with and who hasn’t. The one who makes my heart ache the most is an 11 year old boy who desperately wants to connect with people. Not all autistic kids even want to connect – but this one does, and he’s never been coached. Human dynamics has never been broken down for him. Thus he is reduced to asking a isolationconstant barrage of annoying questions like, “What’s your favorite number?” Or “Which ‘g’ word do you like best?” Unless something changes, this kid will never have the deep connection with others that he craves – and when you desperately want connection but can’t access it? That must be a terribly sad thing, and I fear the worst for him.

On the other hand, I know a couple of other autism couples who have done major work with their kids, and yet their kids won’t ever fit into society’s standards of “normal.” Still I’m positive that, without that work, those kids wouldn’t be nearly who they are now. And I think they have enough skills that they will find their place, and their own, in this big old world.

There is a time to work like crazy, and then there is a time to stop. I wonder what would have happened if I’d followed that doctor’s advice and taken time for seclusion even when life’s waves were tsunami-like. I probably would have managed the anxiety better. The rest would have been so good for me, and stepping out of the storm to get a little perspective, to dive into Spirit, could have made a big difference.

But it was what it was and, with a ton of grace, I am now able to enter seclusion. Sitting here in the quiet, with nature’s beauty all around, I am grateful. Not just for this moment but for the whole journey. Though I never would have consciously asked for it, autism has taught me so much, and through it I have become more trusting, more aware, and more compassionate. So thank you, God. Please don’t do it again to me — ever! — but thank you. 🙂

Namaste’.

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.

Yesterday was Father’s Day, and Blue Eyes chose a hike in the Sierra Buttes to celebrate. It had been a long time since we’d been to the Buttes, and we were all quite excited at the prospect. So far so good, right?

We got an early start, drove a ways, parked at the trailhead and started to hike. Then it happened. The dog thing came up…again. The crazy, totally unfounded and irrational terror of dogs reared its ugly head. What did this mean? Well, almost every other party hiking yesterday had a dog with them. The first family that went by had not one but two of the fearsome creatures. Joseph ran off the trail and into the woods as they went by. But in his fear and panic, he also started insulting the dogs (loudly): “Those dogs are mean! They’re nasty!” And here comes the winner: “They should be killed!”

CheckersRepeat variations of this many times over. At one point, Joseph was out in the woods again, and Blue Eyes and I were waiting for him on either side of the trail. Our dog, apparently NOT one of the fearsome creatures, was hanging around happily.

I looked at Blue Eyes and said in a trembling voice, “The pain body! The pain body!”

The author, Eckhart Tolle, started the pain body concept. He says that all our past and present pain accumulates to create a negative energy field that occupies our body and mind. He seems to treat it as an invisible entity in its own right: which, if you think about it, it really is. How many of us do things we wouldn’t normally do when we are in a lot of emotional pain? I know that I almost always regret what I do when my pain body is up.

Tolle’s recommendation is to watch the pain body closely, as there is a lot to learn from it. Also, when you are watching it you are not sucked into it. You are being the witness — that oh-so-powerful way of living life.

So I watched it. And Blue Eyes and I had a good talk about it: His pain body was not up. He was surprised and a bit frustrated, but not angry and sad the way I was. He didn’t want to push Joseph off the cliff at the top (note: I am speaking figuratively here. While the pain body part of me certainly did want to push Joseph off the cliff, the rest of me remembered that I (a) love him, (b) feel sick when I kill even an ant, and (c) don’t want to spend a good portion of my life — even a Joseph-free life — in prison).

Then I added in something new I’ve learned from the Buddhist teacher, Sylvia Boorstein. “Sweetheart,” I said to myself, “you are in pain. Relax. Take a breath. Let’s pay attention to what’s happening. Then we’ll figure out what to do.” I am paraphrasing, but this is roughly what Boorstein says about these lines: “Sweetheart” reminds us to be compassionate to ourselves. “You are in pain” is stepping outside and being the witness. “Relax” suggests to the mind that there is another approach to this situation. “Take a breath” offers a new focus. The rest suggests more witnessing — looking within first and acting second.

It helped. A lot.

After a couple of hours on a steep, dog-filled trail,  something happened: a man we had gotten friendly with stopped ahead of us to talk with someone. His sweet dog, Sammie, wandered down to say  hi. Joseph went into reverse fast, while Blue Eyes and I loved-up Sammie. “Joseph!” we called. “Come pet Sammie. We’ll hold him for you.” Joseph made his way slowly toward us, then gave Sammie some pets from the back. He got more brave as he went, and soon it became apparent that Sammie had also landed in the “not a fearsome creature” category.

We climbed some outrageous stairs to reach the observation tower at the top of the mountain, 8900 feet up. What accomplishments! A long, hard hike, at least one new dog on the friendly list, and a pain body observed.

The way down was much more cheerful. Less dogs, and even the ones we encountered didn’t cause so much drama. Blue Eyes andSierra Buttes I congratulated each other: We hadn’t seem any other special-needs kid on the trail, and we could understand why. With a kid like Joseph, it’s much easier to stay home and do something he wants to do, like screen time or whatever. A large portion of this hike was a pain in the behind. But I remember John, our RDI consultant, telling us we needed to teach Joseph board games so that it wasn’t another thing left out. And so it was with the hike yesterday. Another thing not left out. It was hard. It took determination and embarrassment and tenacity. But we did it.

Afterward, I asked Joseph how the day was for him. “Good!” he said. He was proud of himself. When he looks back on this day, the episodic memory will be one of accomplishment and pride. Us too.

So there we have it. Another thing not left out. Thank God.

 

 

A couple of months ago, I had a one-on-one session with a spiritual teacher. In tears, I told him that I coudn’t relax. My jaw was in a continually-tightening vice that was now causing nasty headaches. My body was clenched and tight, my mind was in fear, I couldn’t sleep, and everything was a stress. He helped me through it — gave me tools to pause, let go of the difficulty, and relax into ease. Everything you need is already here, he said: Abundant love, unending help, incredible wisdom. Just choose it.

This, along with some other practices I’d lately incorporated, has brought about a transformation in my life. I choose ease much more often. I laugh more readily. I don’t have headaches. I sleep. I have so much gratitude for this shift — one that, for many years, I thought would never come.

I doubt that any parent of an autistic child ever forgets the moment they receive the diagnosis. When the psychologist pronounced it to us ten years ago, I bawled. I also future-tripped. The images for the future looked like a boy, teen, young man, etc who stood in a corner and flapped his hands, cooing and moaning. Wearing diapers, never engaging meaningfully, never a friend in the world. What a scary image that was, and how it tortured me through those early years. That was when the stress and terror began.

This blog documents a lot of the harder moments so I won’t go into them here. Suffice it to say that tension and fear became chronic companions in body and mind, and sometimes even in spirit. And this is largely how I’ve been for the past 10 years.

Now Joseph is 12. I’ve gone back to work part-time, and last summer I dragged Joseph into the office with me now and then so that I could get some work done. This year, as summer approached, Joseph told me he wanted to go to day camps: “Anything other than going to the office with you, Mom!”

So Joseph started his summer break this week by attending camp in the mornings at our former church. As we drove toward the church I started past-tripping this time, remembering other events where we’d walk into a room full of strange kids and Joseph would cling desperately to me, refusing to let go, overcome by fear and anxiety.

Not this time. We walked into the room and he said goodbye, asked the camp counselor where he should sit, and sat. I was all the way out to the car when I remembered that I needed to give him some money. I went back in and found him, handing him a $10 bill. “Enjoy your day, Mom. Enjoy your day,” he said with emphasis, meaning “Get out of here, Mom, you are not welcome here.”

Geez. Talk about a shift!

Friends have also been a new thing, dissolving a big chunk of the torturous, future-tripping experience. This year Joseph had a best friend, a second best friend and a third best friend. He is spending every Tuesday this summer at his best friend’s house, and every other Thursday with his second bestie. They are not the friendships I would have but they are definitely friendships, and I am so happy for him. Joseph doesn’t notice that this is a miracle at all; he never thinks to question the fact that he has friends. I mean, why wouldn’t he have friends?

Why indeed. Joseph doesn’t think about his autism at all, as far as I can tell. In fact, he’s told us that he’s done playing sports with the special needs kids; he wants to be on the typical teams. This one is a little tricky for me because he can’t keep up with the typical kids, but then neither is he slow enough to be on the special needs team. We’ve told him that, if he practices and is good enough, we will support him being on the same teams as his friends. In the meantime, we’re encouraging swim team and other sports that don’t require so much dynamic interaction.

My oh my, what a journey. It is good to breathe and let the hard stuff go, because I choose ease. I choose love. I choose to know my connection to the Divine. I choose to step lightly.

It’s dark because you are trying too hard. Lightly, child, lightly. Learn to do everything lightly. Yes, feel lightly even though you’re feeling deeply. Just lightly let things happen and lightly cope with them. I was so preposterously serious in those days…Lightly, lightly — it’s the best advice ever given me…So throw away your baggage and go forward. There are quicksands all about you, sucking at your feet, trying to suck you down into fear and self-pity and despair. That’s why you must walk so lightly. Lightly, my darling. ~ Aldous Huxley

Blessings to all.

 

 

 

 

A couple of nights ago, I had a scary dream. The details are sketchy, but somehow things were closing in on me, squeezing me, smothering me.

I gathered everything I had and yelled, “HELP!!!” Immediately things started shifting, softening and giving me some space.

Then Blue Eyes took me from the dream: “Yoga Mother! It’s okay. You’re dreaming!” I looked at him, wide-eyed. “You heard me yell for help?” He nodded affirmatively, and then he drifted back off to sleep.

As for me, I laid there feeling surprised and grateful. In some far-off post I’ve mentioned that, for many years, I’d dreamt of terribly dangerous situations where I’d be unable to call for help. I might try calling 911 but the phone line would be down. Or I’d try to scream and only a whisper would come out. I could never ask for help, and help never came.

Every now and then, I’d still have a dream like that. But this time — wow! I’d called for help so hard that it was heard and responded to not only in my dream life, but also in my real life! What a lovely shift.

on drumsAs always, the inner reflects the outer and the outer reflects the inner. Life has shifted a lot since I wrote that first post six years ago. Joseph still has autism, of course, but he’s a pretty different kid from the one he used to be. He’s made it to 5th grade in a neurotypical class. He can hold a fairly good conversation and he has good eye contact. He is making his way in this tough old world, and I am so proud of him. He’s still a pain in the butt and probably a lot more work than your typical kid, but we can live with that.

I feel like we’ve worked on everything: Eye contact and leaky gut and nose picking and voice regulating and social skills and fear of dogs and sleep disorders and gluten sensitivity and severe constipation and general anxiety and taking responsibility and appropriate stimming and self-regulation and co-regulation and crowd-tolerance and noise sensitivity and sensory defensiveness. And on and on.

But since, thanks be to God, much progress has been made in all these categories, now we get to work on what the experts say autism is: A processing disorder.

no planetTake, for example, Exhibit A on your right. This is a beautiful picture of a great variety of animals standing around the planet. In the center Joseph has written, “No planet is mine except home.” He showed me this picture with tremendous pride, and I, not wanting to shoot down his confidence, admired it greatly. In private I pondered how to help him to sort out the sentiment in the middle without shaming him in any way.

“Joseph, I love this picture,” I said to him. “I love it so much that I want to buy a big poster board and have you draw it again, painting all the animals. Then I want to hang it on the wall. Would you be willing to do that for me?”

What’s a kid going to say to that? He nodded proudly, and I continued. “What you wrote in the middle, can you tell me more about what that means?” We discussed it, and it meant what I suspected it meant: This planet is home to all of us. Then I kindly explained that it didn’t make sense the way he’d written it, and could he put it the other way on the big painting. No problem; he agreed happily. It was a non-issue, I am happy to say.

When he says, “I’m embarrassed!” Blue Eyes or I will say, “Embarrassed is when you’re ashamed. You don’t seem to be embarrassed. What are you really?” He’s getting better at this now; he’ll respond, “I’m mad (or whatever)!” Helping crossed wires get uncrossed is a pretty hefty undertaking, but I am thrilled to be here.

We couldn’t have arrived even at this place without all the amazing help we’ve had. I know without a doubt that one of my soul lessons was to learn to ask for help and to let myself be helped. I’ve still got a ways to go, but without this journey of autism I wouldn’t be near as far along as I am. So today I give thanks for progress, for challenges, for vulnerability and for help.

The Buddhist outlook toward challenges is to know that karma is so complicated that one can’t possibly understand why the situation is the way it is. And it includes the understanding that, for now, it cannot be otherwise. In other words, it is the way it is. Until it isn’t. Then it’s some other way.

Relaxing into that. Wishing the same for you.

Two weeks ago, a dear friend took his life. As soon as we heard, in shock and grief, Blue Eyes and I made emergency arrangements for Joseph and headed to his house. As we got out of the car his wife hugged us and said, “They are just taking Ian away. Say goodbye to him while you can.”

The coroner, who was helping to carry him out in a stretcher, unwrapped his face. Blood spattered and frozen, it didn’t look like Ian. Ian, the ever-smiling, ever-caring, silently serviceful man, was not in that body. The Best Man at our wedding 24 years ago, the deep friend and brother in God, this was no longer present in that body.

Most of our meditation group gathered there. Hugs, love and tears were exchanged freely. Oh, Ian. How we miss you.

Do we not know what an impact we make on others in our simple lives? Ian and his wife were so kind to Joseph. Healers come in all kinds of packages, and Ian, by his humble example of love and care, was a healer. He was an important male role model in my son’s life — and now he has removed his physical presence from our lives. The reason will always be a mystery.

In sharing with our group a few days later, his wife brought up how small talk was so hard for Ian. He found eye contact hard. He didn’t know how to start discussing inconsequential things and let the conversation move around to things of more substance. His wife said that this brought up a lot of anxiety for him — how he wished he could be “enough.”

I knew Ian had social anxiety and that he couldn’t easily meet my eyes. A long time ago I had silently diagnosed him as on the spectrum. Way up on the spectrum, but still on it. Yet he was famous for his huge smile, so friendly and sweet. I never, ever would have tagged him as a potential suicide.

Held a pistol to his heart and pulled the trigger. A nice, neat hole that took him instantly. And such symbolism. A broken heart. No more heart for this life.

We didn’t, couldn’t, tell Joseph how it happened. We told him Ian’s heart stopped, but Joseph guessed that Ian took pills to make that happen and we didn’t contradict him. I wonder if many suicides are from people on the spectrum. The only other suicide I’ve had close to me was a teenage neighbor, and, looking back, I remember that he couldn’t make eye contact and that he walked funny — on his toes. Sigh.

A surreal twist to the whole situation was that Ellen, a medium from England, was visiting our friends. She comes twice a year to the US and conducts readings with loved ones from the other side. So as we grieved on that day two weeks ago, she would quietly point and say, “He’s standing right in front of that tree. He keeps saying, ‘I’m free! I’m free!'”. She said he took his life because he felt like he didn’t belong. All these years trying to fit in, and he just didn’t belong. He was so confused, she said.

As a spiritual being having a human experience, I too have often felt like an alien in this life. This is a common feeling for those of us who identify with our spiritual side more than the human one.  But to feel that one also just can’t fit in with other humans — that must be hard. To stand quietly while others talk because you can’t think of what to say. To feel things deeply and not be able to express them. To be unable to engage or outwardly connect with people who you know and love. Ugh.

I pray for my Joseph, and for all our spectrum kids. May they make their way in this crazy world. May they find connection and authenticity. And, when it’s not working, may they seek help. As Ian’s sister said at his memorial service:

I wish you had not been so heroic with your burdens;
I would have carried more, much more and gladly.
It would have been an honor.
So I spit on stoicism today;
That chill perjurer who poses as a virtue.

Someone once told me that Satan loves it when we don’t ask for help. And I remember, at an OA meeting, the leader said that if you share your pain, you leave it there; but if you leave it unsaid, you take it with you.

May we have such a good relationship with our ASD kids, and all our kids, that they can share the good, the bad, and the agonizing. May we, as parents, have the ability to empathize, to hear and feel their pain, and not try to gloss it over or make it all better when it’s not. May our children feel heard. And loved. And worthwhile enough to choose life when facing the darkness.

Om. Peace. Amen.

One of the trippy things about having a kid with autism is that, unless your kid happens to be displaying autistic symptoms right at that moment, s/he looks pretty normal. This is why having to take my ten year-old, normal-looking son into the ladies’ bathroom is an excruciating process for me.

It’ll be like this: we’re out and about, miles from home, and Joseph or I needs to use the bathroom. So far so good, right? We walk to the facilities and, naturally, they are separated into men’s bathrooms and ladies’ bathrooms.

(Allow me a slight digression. In Australia, they are labeled “Male Toilets” and “Female Toilets.” I always wondered, how do they know the gender of a TOILET? But, as I say, I digress.)

This is where we run into trouble. As usual I will say, “Do you want to try the men’s?” And as usual, Joseph, filled with anxiety, will answer with a resounding “NO!”

Still, every now and then he will actually open the door and stick his head in. Then he’ll pull his head out and say, loudly enough for the poor, innocent man to hear, “I can’t go in there. There’s a MAN in there!” Or he’ll just say, “I can’t! I’m too scared!”

And so, here we go again. Into the ladies’ bathroom, me and my ten year-old, normal-looking son.

Now, Joseph knows full well that it’s weird for him to be in the ladies’ bathroom. Believe me, I’ve tried to shame him out of the practice any number of times. But instead he hurries into the bathroom, rushes into a stall, closes the door, and asks loudly, “Mom! Where are you?”

Once he’s figured out that I am close by he continues his interrogation. “What are you doing, Mom?” “When will you be done?” “Aren’t you done YET, Mom?” Then, just for a little extra entertainment, he’ll start in with, “Mom, there’s another woman in this bathroom! Help me, Mom! Help me!” (This latter statement is because he’s embarrassed to be in there — thanks to me — and doesn’t quite know what to do once more women arrive.)

The good news is, once Joseph starts acting like this, people quickly figure out he’s got a disability and I can show my face again without being embarrassed. So, see? It all works out. Ha ha.

You could say that it’s yet another thing I need to surrender to. You could point out that it’s the practice of building humility through humiliation. But please don’t. I’m just not in the mood to see the longer-rhythm good that could come out of this.

bathroom signWe are on vacation in Oregon. Beyond the horrid days like the one I outlined in my last post, we’ve been truly enjoying ourselves. And THIS is a sign I saw outside an Oregon bathroom at a campground.

Glory be! I LOVE this sign. I want this sign on every public bathroom from here to Timbuktu.

But until that happens, can you do me a favor? If you see some normal-looking kid in the wrong gender bathroom with his/her parent, just smile pleasantly and look the other way. It’s not nearly as bad for you as it is for that parent. You can trust me on that.

A friend of mine, a fellow yogini, got diagnosed with advanced stage breast cancer.  Suddenly she had only a short time left, a few weeks maybe, before she would die. Her husband tried to be brave, but one day he completely lost it, drowning in his sorrow.

Mara was not a strong, emotionless person. Yet she looked at her husband and said sternly, “Control the reactive processes!” Her energy and focus remained centered and inward, from the moment of diagnosis to the moment she passed. It was remarkable.

Mara’s words are coming back to me a lot lately. We are on vacation with Joseph, which is difficult for two reasons: One, there’s no getting away from the autism, and, two, Joseph’s reactive processes are even less controlled. Just to cope he is stimmy and perseverating and going out of his way to try to get Blue Eyes and me to react.

JosephIn the past few days, as I think about controlling the reactive processes, I see that Joseph is both my greatest blessing and my biggest curse. Yogananda said,  “You must stand unshaken amidst the crash of breaking worlds,” and I think about this when, for the (I am not exaggerating) hundredth time that day, Joseph starts talking about the tracts he’ll record on his CD.

Or when he is too anxious to be alone: to sleep, to use the bathroom, to be in a room by himself, for God’s sake. Or when he does his weird autistic dance, in private or in public, contorting his body and wriggling his fingers and singing in a strange, otherworldly way.

It’s all amplified by being away from his familiar environment and I understand that, but man do my reactive processes want to react.

Part of it is the way I ‘should’ on things. A vacation ‘should’ be fun, stressless, effortless. I hear my sometimes-therapist in my head saying, “But Joseph has high anxiety and his autistic tendencies come out big time when you travel. Why would you expect anything else?”

Right. Why would I expect anything else?

What a great situation for a yogi. What a wonderful chance to watch the mind and its resistance – to smile at the struggle it creates because it’s not getting what it wants. What an opportunity to dig deeply to stay in my center, especially when the kid who knows my reactive processes intimately would like nothing better than to pull me out of it. What a joy to just stay present, letting each moment be what it is without adding shoulds, what-ifs or resistances to it. What a reminder to call on God and legions of angels for their help.

What a blessing to finally sit down, after way too long, and write a blog post.

Control the reactive processes.

God help me.

 

I teach yoga for the staff at Joseph’s school, and one of the regulars is his special ed teacher, Dana. Usually we focus on yoga but, every now and then, she’ll share with me a tidbit about Joseph when class is over. Last week, for instance, she wanted to tell me about the “miracle” that happened.

For months Dana has tried to get Joseph to leave his session with her and walk into the cafeteria (for lunch) by himself. Now, the cafeteria is a challenge unto itself, being noisy, crowded and somewhat unstructured, but the big deal was that he’s always refused to go in without his aide. On the day of the miracle, Joseph walked over, found a friend, and went into the cafeteria with him. And he’s been doing it ever since.

Wonder of wonders, miracle of miracles!

Another one: This morning I walked Joseph to his classroom. Never, ever in the past has he allowed me to leave before his aide shows up, but today he let me kiss him and go. Wow! On my way back to the car I saw his aide coming up, and I excitedly told her what happened. “Yup,” she replied. “Takes about 100 repetitions and then he can do something.”

I laughed. “Blue Eyes and I say it takes 500!”

Repetitions. What a great way to learn patience. What a marvelous way for my character to be formed. What great sandpaper for my rough spots.

Will it ever end????

Sigh…probably not. And it gets more complicated. Now we are endeavoring to teach him to speak to us with respect, to clean up after himself without being reminded…that sort of thing. It feels endless. Maybe it is. Maybe every parent feels this way. Maybe I’m going to set myself on fire.

sugarEaster was full of sugar, and right afterward we took a week’s vacation. Think ice creams and other sweet things — the kind of thing you do when you’re on vacation.

Trouble is, by the time we got home, we saw that candida had taken over Joseph. He was spacey, stimmy, tantrummy, and an overall pain in the butt. We put him on a sugar-free cleanse, which has been devastating for him. Almost every morning he wakes up and starts an argument with me. When can I have sugar? Can I have it if we go to the lake in the summer time? Can I have it on June 6th, the last day of school? Can I have a soda the next time I go to a restaurant?

It’s relentless. I am trying to do my Love and Logic — I love you too much to argue — and leaving the room, but this kid will not let it go. It’s a major struggle.

Our Love and Logic Instructor once wrote on the whiteboard four big letters:

C
T
F
D

 

Calm The F*** Down.

i pray for long-term perspective. For more patience during these phases that require so much repetition. I pray to remember that things take longer with Joseph, and that I need to take care of myself in order to deal with his special needs. Last, but definitely not least, I pray  to CTFD in those trying times.

Never really meant to be so distant
Should have known that it made no difference
You were holding my hand when I walked away.
You were there in the middle of the night
You were there when I lost my sight
You’re still holding me today.
~ Shawn McDonald

Ever heard of the Black Willies? It’s where you wake up in the night and all the “bad stuff” is amplified: Fears, loneliness, unresolved conflicts, etc. The insomnia I experience started with Joseph’s birth, got even more intense after the autism diagnosis, and is still with me today. The Black Willies: Nine years and counting.

2013 was monumental because, in December, I had whittled down to mere crumbs of sleep meds. Then I gave them up entirely. My sleep actually improved for a while, but now the insomnia’s back with a vengeance.

While it was improving, I gave credit to the fact that I was no longer running from the Black Willies. In fact, if they woke me up, I wouldn’t try to write or read or meditate them away. I would sit, quiet myself, and look at the feelings around the Willies. I’d welcome them, meet them, allow them to be there, and then look at the even deeper feelings underneath those ones. In this way, I became aware of multitudes of fear that I hold, that I’ve been running from.

Part of me felt healed from being seen like this, and the sleep got better because of it. But over the past few days, I’ve had very little sleep.

Ok, my body is in some terrific pain, and that doesn’t help. But which comes first: fear and crazy thinking, or a painful body? Or do they feed upon each other, creating a snowball effect that’s hard to stop?

There’s an old yoga legend that says that, in the beginning, God decided to manifest him/herself in other forms. Among other creatures, God created human beings.

The first humans looked at themselves and said, “Hey! We’re not in the form of infinite love and awareness anymore, but it’s obviously who we really are. Screw this! — I’m going home.”

They sat down, meditated, and become One again with their source.

God watched all this happen. S/He said, “Hmmmm. I’m going to have to make this game a little harder.” S/He once again created the human form, this time adding Maya to the mix.

In Sanskrit, Maya literally means measure. It is that which separates, isolates, creates the appearance of difference.

So this time humans looked at themselves and said, “Hey! I’m a human being now. Think I’ll get busy finding out how human beings can make themselves happy.”

Thus the game, the lila, was created, and thus it continues today.

I think this is what the Black Willies are all about. When we feel separated, distant from our Source, there is fear. When we feel disconnected, there is disorientation, misunderstanding. Fear.

It is strange to me that I can have enough awareness to know I am not really separated from God, and yet be stuck in the Black Willies at the same time. Unable to get out.  Man. This maya is a complex thing. No wonder it’s sometimes called The Enemy.

I breathe. I remember the words from Shawn’s song:

You were there in the middle of the night
You were there when I lost my sight
You’re still holding me today

I want to feel God holding me. I desperately need to feel God holding me, and yet I don’t. I sit here, in the middle of the night, feeling alone, afraid, sad and worried.

I don’t mind these black times, really. I don’t mind being knocked to my knees because it’s a great place from which to pray.

And to write blog posts.

From the Black Lagoon, where the Black Willies play, it’s Yoga Mother signing off.

Do you ever just step back and admire the mind, with all its stories and games and tricks? All its envying and resistances and fears, all its ‘what-ifs’ and ‘why me’s’ and ‘oh no’s’?

I know I do. I mean, it never stops its play. Oh, maybe here and there, at a life highlight or an amazing meditation, but mostly the mind just goes on and on and on. And when you have a big thing like a child with autism, the mind gets tons of grist for its mill.

I have consciously tried not to blame my son for his autism. In something reminiscent of the Christian policy of loving the sinner but hating the sin, I have loved Joseph but I have hated autism. I have despised autism, cried over autism, obsessed about autism, resisted the fact of autism, worried relentlessly about autism, and cursed God because of autism.

It’s different now. This is because I recently heard a spiritual teacher, Gangaji, speak about the enemy. I am paraphrasing her here:

She says that the mind, in its restlessness, seeks out entertainment. Obviously there are many ways in which the mind is entertained, but she got specific, singling out how profoundly the mind is entertained by war.

This war, I assume, is not just nation against nation, but conflict within one’s own little world, or even with oneself. And in order to have a war, Gangaji says, the mind must first conjure up an enemy.

Since hearing this, I have been watching my mind conjure up enemies. They are everywhere! If I am running late, the red light is an enemy. If my husband snores when I have insomnia, he is the enemy. If one of my closest friends gets depressed and doesn’t contact me for a while, she is the enemy. Basically, anyone or anything who does what I don’t want them to do becomes an enemy.

Ooooh, enter autism. Autism is the club nobody wants to join. Raise your hand if you agree. Ok, don’t — I can’t see it anyway.

Here’s the thing: Gangaji goes on to say that when we’re truly ready for peace, we stop conjuring up enemies. There simply IS no enemy anymore.

It’s really quite simple. We are either resisting, or we’re not. ~ John Astin

Don’t hold me to it ‘cuz I may change my mind (literally), but right now I am choosing peace around autism. Autism is not the enemy. Even God — the one I blame when all else fails — is not the enemy. Autism just is, and I am not going into war over it. I will do all I can to help Joseph realize his full potential, but that, too, can be done peacefully, without fear or worry or even urgency.

When that resistance stops — and when I stop being in a war even with the war — then there is peace. Gangaji defines peace as the absence of entertainment.

It’s a nice place. I watch the attachment to this nice place come up and I smile: There is the mind again. Now it wants to make being anywhere but in this nice place an enemy.

Wishing you presence, awareness, and the ability to witness — rather than believe — the mind in its playing.

Please click LIKE if you like this post. Thank you!

horseback ride halloweenOne of the best pieces of advice I’ve ever gotten from a fellow autism parent was this:

Figure out what you love to do and then be persistent at getting your kid to do it too.

This mom is an avid cross-country skier, and she did not want to give that up just because her son was severely impaired with autism. She spent two years pushing him up snowy hills and holding on to him as he went down the snowy slopes. Eventually he got it, and now the whole family cross-country skis together regularly.

Blue Eyes and I wanted to travel as a family. Travel, of course, requires lots of changes and being out of the routine — both things that autistic people don’t take easily. When Joseph was turning three, we wanted to bring him to New Zealand to visit his nanna and other relatives. I was freaking out about taking a young autistic kid on such a long flight, but our counselor said this:

It won’t get any easier if you wait.

This, too, was good advice. We took him on that flight, and he’s been traveling with us ever since. Hotels were difficult at first — I have vivid memories of packing up and checking out at 3:00 one morning because we knew he’d never get back to sleep — but now hotels are one of the best parts of traveling for him.

Joseph is pushing the limits himself now. He nagged me incessantly to go ice skating recently. When you’re dealing with autism, anything different is good, so off we went.  The rink was great because you could stack up buckets and hold on to them as you skated. It was a perfect first visit, and we’ll go again sometime.

He hopped up on a big horse on Halloween and rode around as bravely as any other kid. A huge step for Joseph.

After six years of trying, after six years of being terrified that he might fall, last week Joseph finally rode his bike all by himself. Oh, he was so proud and happy. He even fell a few times and realized that he didn’t die.

Now, as winter begins to whisper in the wind, Joseph is talking about skiing. Our 23 year-old nephew is visiting from New Zealand, and he is a very enthusiastic skier. Then we have Joseph’s friend DJ who, with his family, is way into skiing – so Joseph’s getting influenced on all sides. The guys went to a ski sale yesterday and bought used ski gear for the whole family. So I guess we’re going skiing.

When Joseph was five, I watched friends put their five year-olds into ski lessons and thought that Joseph would never be able to do that. He’d scream. He’d panic. It’d be too strange, too unusual for him. He didn’t have any sense of balance. He’d fall a lot, and he was panic-stricken about falling.

Amazing what a difference a few years can make, because now he is ready. He put on his skis, poles and boots this afternoon and “skied” on our lawn. “See? I’m good at it already!” he said to me.

Music to my ears.

The Buddha said we make our own prisons, and I believe it. I have put limitations around my kid and his condition; I think he’ll “never” do this or that. Now I’m thinking I’d better remove “never” from my vocabulary.  It’s like this reverse-advice from Richard Bach:

Argue for your limitations, and sure enough they’re yours.

I’ll leave you with one famous piece of advice. It comes from Winston Churchill and is very relevant, not only to parents of special needs kids, but to everybody everywhere:

Never, never, never give up.

Blessings.

Joseph started a social skills group last week. We are calling it a playgroup but nonetheless it is a social skills group, led by a Speech Therapist named Daphne.

Joseph has been having some trouble parting from me when it’s time to go to school. It had become something of an issue, even bringing me to tears as he would cling to me outside his classroom, crying and pleading with me not to go. Picture the anxious kindergartener clinging to their parent on the first day of school, and you’ll get the picture. Except that Joseph is in third grade and it’s been happening every day this year.

This shifted recently, and the only things I can credit that to are time and the fact that I shifted, as well. I decided not to get anxious when Joseph got anxious, but to calmly kiss him, tell him I loved him and I’d see him later, and leave. This actually made a big difference, and I’ve been feeling really good about it.

So. We go to the social skills group for the first time. It’s just Joseph, Daphne, a boy named Luke, and a teenage helper. Luke’s mom stays in the waiting area, which is a very short walk from where the kids are meeting.

Joseph, however, will have none of that. I have to walk over to the room with him, which I do. Then I try my kiss-and-go approach, with the reassurance that I’ll be right in the waiting room.

Joseph will have none of that, either. Clinging, crying, embarrassed but determined, he says, “Don’t go, Mom! Don’t go! Don’t leave me!”

windowI don’t want to stay in the room with the group, so Joseph comes up with a plan: I am to sit outside the room in the hallway, facing a window that has the blinds drawn, so that he can occasionally pull the blinds aside and make sure I’m still there.

Sigh. I pull up a chair and sit in the hallway. I listen to the muffled sounds inside the room. I can’t see anything around the blinds. I am very thirsty but I don’t dare walk to the lobby for some water, in case he looks out and I am gone. I have no book, nothing to do but stare at the window for the next hour.

So I sit there and contemplate the fact of suffering.

Suffering, Gangaji says, comes from an idea we hold of being a victim. Whether it’s God we hold accountable, or circumstances, other people, ourselves or whatever, we have the idea that we’ve been wronged. Whenever we remember the wrong/s, there is thought, emotion, and momentum around it. What would happen, she asks, if we just let it go. Yes, we’ve been wronged — sometimes terribly so — but maybe it’s time to stop punishing the tormenters, even if they don’t deserve it!  She invites us to experience putting an end to victimhood and feeling joy instead of suffering, just for a change. That way, she says, if we want to go back to suffering, at least it’s a conscious choice.

So, the window seems to ask me, what’s it gonna be? Is this an hour of suffering or a chance to relax with me and enjoy some quiet contemplation?

It is tempting to feel wronged. Wronged by autism and wronged by an anxious kid who makes me sit and stare at a window for way too long. But I kind of choose the latter. I mean, it wasn’t too bad, really, sitting there for an hour. Eventually I even got someone down the hallway to bring me a glass of water.

What I’m saying is, I’m really looking at suffering and victimhood. I know that if I can work with my inner narrative, then no matter what is happening externally, I can be content. Yoga is all about living from the inside out, rather than the outside in.

It’s a funny thing, listening to Gangaji. The people who come up to speak with her are often full of suffering. They have stories of great sorrow, or mighty struggles going on in their lives. But by the end of their talk, they almost always end up laughing. Really laughing, I mean. Like they see it’s actually hilarious. Like they finally are in on the joke, and what a joke it is.

I fully expect to be staring at that window again this week. But this time I’m coming prepared. I’m bringing water, a book, and even more conscious choice. I want to laugh hilariously! I want to put an end to feeling like a victim and embrace the joy beyond the story. It is a great story — and what would I post about without great stories? — but, like the lady says, how wonderful to be conscious about whether or not one buys into the suffering.

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.

Blue Eyes talks about a period in his life where his neck would go into terrible spasms — so badly that it would make him lose consciousness. He went to the hospital, where they ran him through a myriad of tests, but they couldn’t find anything wrong. The doctor finally told him that it was, simply, stress. Massive stress.

“Stress?” Blue Eyes looked at the doctor in surprise. “I’m not under any stress!”

But as he went home he started to look at his life. A very sensitive young man, Blue Eyes was far from home, working with a really rough crowd of guys. He didn’t fit in and he couldn’t fit in, but he felt stuck in the situation. Yes, he had to admit to himself, he was stressed. Massively stressed.

This is how I felt after my first appointment with Sheri, the therapist, last week. “Stressed? But I’m not under any stress!”

With Sheri’s guidance, I looked at my life. If I’m not with Joseph, I’m almost always doing something “useful.” I work or I go to meditation or I attend a spiritually-oriented class. Even my weekly date nights with Blue Eyes consist of going to meditation. Which is great, but there’s got to be a balance there somewhere. Or so I’m told.

With Sheri’s encouragement — really, almost at her insistence — I spoke with Blue Eyes about an upcoming “date” to go to a spiritual class. Our amazing respite worker, Karen, agreed to come earlier than planned, I picked up Blue Eyes at his work, and we spent a whole afternoon and evening at the river. Our area has the MOST beautiful river, so clean and healing and nurturing. We swam and we napped and we read and we talked. As the sun began to set we hiked out, feeling alive and grateful and fed.

I have been seeing Joseph as a problem, a nuisance. The problem here, I believe, is that I haven’t had a big enough vision about my child. After all, I didn’t have a kid in order for him to win popularity contests or get straight A’s. I had a kid, and I think God gave me this kid, in order to for him to go out and make a positive difference in this world.

Kahlil Gibran says:

imagesYou are the bows from which your children
as living arrows are sent forth.
The archer sees the mark upon the path of the infinite,
and He bends you with His might
that His arrows may go swift and far.
Let your bending in the archer’s hand be for gladness;
For even as He loves the arrow that flies,
so He loves also the bow that is stable.

* * *

My job: To let God bend me with gladness. To shoot the arrow straight, swift and far. Straight to God’s purpose, whatever that may be. Probably something in “the house of tomorrow, which you cannot visit, not even in your dreams,” (Kahlil Gibran).

Mom and JosephJoseph’s future is not even my business. My business is to focus on bending (and part of the bending, happily, seems to be having more fun!) and becoming a straight-shooter. My dear little arrow is already fearfully and wonderfully made, and it is tremendously egotistical to think that his development is all on me.

In truth, Joseph already makes a positive difference in this world. People who interact with him are touched, impacted by his sweetness and caring and humor. For many, he is the first person with autism who can engage quite well with them.

So maybe I can relax and realize that the arrow is already going straight. These kids are God’s own, just like all of us, and so I give mine back to God.

Which, of course, is where he is anyway.

I could hear the sound of the whip as the man flogged them with all his might. When he left the room I sneaked in to see a pregnant woman, bound in a crouching position, losing consciousness from the whipping. I saw my husband, Blue Eyes, tied in the same crouching position, in shock to find himself like this.

As I left the room I ran straight into him: a huge, muscle-bound, ferociously angry man. Immediately he understood scary manwhat I’d seen and he decided to give me a similar fate. He was in a rage; I was absolutely terrified. Both emotions fueled us and, as he struggled to capture me, I fought back with everything I had.

It was my intention to knee him in the groin, disable him, and run out of the house to get help. But he was so big and strong that all I could manage was a weak punch in the groin, which stopped him for just a moment. As I turned and ran for the door, I knew my chances of escape — and life or death — were only 50-50.

Then I woke up, shaking.

I spent much of that night and the next day wondering what it could possibly mean. In my meditation the next evening I asked for understanding, and the following day it came in a flash.

The huge, strong, scary man was autism. So powerful. Such a force to be reckoned with.

The captive woman was me when I was pregnant: Bright with new beginnings, excited at the prospect of a baby, instead I was bound and flogged almost to death by autism. Blue Eyes, too.

Then there was the current-day me, still fighting autism with all I had, but scared to death that it was going to get the best of me. Outcome uncertain, to say the least.

I related this dream to a psychotherapist friend, who told me my interpretation seemed right on. “But,” he pointed out, “autism itself is not big and strong and scary and powerful. You give it all those qualities.””

“Also,” he added, “you need help.”

Ya think?

“Get therapy,” he told me.

“How do I find the right person?” I asked.

“Trust your intuition. It’s got to be the right chemistry,” he said.

Ok, I reasoned, if I was given that interpretation to the dream just the way the angels/guides seem most likely to communicate — inserting a flash of understanding — surely they can direct me to the right therapist. I found one who seemed a possibility to my rational mind but, if I had to be honest, I didn’t like the look of her in the ad. No chemistry there. So I continued to ask.

Today I had ten minutes free before I needed to pick up Joseph from school. I was in town so I thought I’d just pop into the local sports store.

Let me preface this next part by telling you I am a triple Capricorn. I almost never have ten minutes free time — I am usually very structured and have a list going of what to do with any of that rare free time that might show up. But this time I had nothing else to do.

As I walked into the store, I ran into two old friends, a married couple, walking out. They’d almost divorced and had clawed their way back into a good marriage again, so we were talking about that when they mentioned how amazing their therapist was.

Green light. Angels singing. Heavens opening and a Voice saying, “She is the one, Yoga Mother.”

I got the info on the therapist.

As the three of us left the store together, I checked my watch. That most informative encounter had taken exactly ten minutes.

I’m feeling hopeful. Guided. I used to be afraid of intuition because I thought my ego might get too blown up if I was good at accessing it. Now I realize it’s nothing to do with me in an egoistic way. It’s how well I can listen, how open I can be, to being told what to do by those who have a much bigger perspective than me.

It’s time to shrink that huge, scary, powerful autism image into something much more reasonable.

Maybe, with help, I’ll even be able to sleep through the night again. After all, it’s only been nine years.

Which, not coincidentally, is exactly how long I’ve been grappling with autism.

We deal with anxiety over here.

I might step outside ten feet to put things into recycling bins. Joseph, upstairs, will hear the door open. He’ll call out,

“Mom?”

“Mom???”

“MOM!!!! YOU’VE LEFT ME!!!!” (This last one is to be read in a panic-stricken, terrified voice.)

How many times has this scenario repeated itself? Hundreds. Maybe thousands.

Sometimes it happens if Joseph is downstairs and I go upstairs. Then it changes its tune just a little:

“Mom?”

“Mom???”

“MOM!!!! I MISS YOU!!!!!!” (This one also to be read in a panic-stricken, terrified voice.)

Recently we took a little vacation to Southern California. We stopped at a hotel halfway down that first night. Joseph slept in a rollaway cot right next to Blue Eye’s and my bed. He woke up at 4am and never went back to sleep.

Why? He was afraid we were going to leave without him.

From that night on, he had to sleep with Blue Eyes, staying in contact with some part of his body through the night so that he could be sure he wasn’t going to be abandoned. We were house sitting. They slept in the master bedroom. I took the 14 y.o.’s room. How romantic!

On the bright side, he does sleep alone, in his own room, when we’re not on vacation.

Blue Eyes and I have been on the path of yoga for decades, so naturally we’ve coached Joseph on taking deep breaths and simply observing the mind when it says things that aren’t true. And it’s helped — but just a little.

We’ve worked some with herbs and homeopathy. I approached one of my best friends, a senior teacher at an ayurvedic college, about the anxiety situation. She confessed that she was going through a similar thing with her neurotypical son, and that she hadn’t been able to help him, either.

IMG_1109Anxiety in the extreme is crippling! I have a friend whose husband can’t work, who has trouble leaving the house, due to his. I see how it stops Joseph in so many ways, and I wonder: What kind of a person could he be without it? I would so love to see him strong and confident, stepping out in his full potential.

We know there are drugs that treat anxiety. They sit on the back shelf of our minds. Sometimes we take them down, turn them over wonderingly, and put them back. It feels like a big decision. I’ve struggled for years with the need for sleeping pills, and I would hate to create a dependency on drugs when there didn’t need to be one.

But when do you say, We’ve tried hard enough; now it’s time to try drugs. Or do you?

I think it comes down to this: Right now the anxiety is somewhat manageable, somewhat influence-able. If or when it gets too strong in the other direction, we will look seriously at medication.

I would be very interested to hear from any of you on this topic. Do you struggle with anxiety in your child/ren, and, if so, how do you deal with it?

Thanks.

When Joseph got his autism diagnosis at the age of two, they might as well have diagnosed me with anxiety at the same time. Anxiety has become such a habit for me that I now have what I call an anxiety slot. It seems that this anxiety slot needs to always have something in it, so if Joseph’s situation isn’t making me anxious, my mind easily puts something else in the slot.

But the spiritual path is a path of increasing awareness. The call is to look intently into the mirror of one’s consciousness and not shy away from the blemishes. So, yes, I have developed the habit of anxiety. And now it seems like the time to work on it. I can see my new yoga series: Yoga for Anxiety. It’d be a big hit, don’t you think?

That  being said, we are experiencing some wonderful breakthroughs with Joseph! Blue Eyes took him to New Zealand (Blue Eyes’ native land) for two weeks in October, and I stayed home. Joseph came back with a deeper bond with his father,  a new openness for adventure, and an appreciation for his extended family.

374567_10151146801606586_881625458_nThis was great, coming on the heels of Thanksgiving, where we recently gathered at my brother’s house with about thirty of his American relatives. Joseph was excited to go — amazing in itself, given that he’s dreaded past gatherings. And he had fun!

Joseph needed the constant scaffolding of being with Blue Eyes or me, but our RDI Consultant assures us that many of his kids would be happy wandering about in their own world, not needing anyone. So this was a good thing. Joseph’s need for us included emotional comfort and perspective-borrowing —  a wonderful thing for a child with autism to look for from people!

It was interesting to look at the impact Joseph makes on my larger family. He reaches into people’s hearts and,  simply by his very being, he helps them to open. He’s been doing that to me for years. There’s something so special about connecting with an autistic child.

Blue Eyes and JosephBack on the home front, Joseph’s figured out a way to tease Blue Eyes so that he gets chased all over the house. Once he is caught, he is tickled. This can go on for hours. Joseph can’t wait for Blue Eyes to get home in the evenings so that they can play this game. In the past, Blue Eyes has been pretty much ignored, and now Blue Eyes says it’s actually fun to come home from work.

The happiness in our house is palatable. Wow.

Connections have been happening, more than ever. I love shared things! Shared smiles. Shared emotions. Shared conversations. Shared snuggles. Precious, precious times.

I have been wondering what the flip side of anxiety is. Contentment? Faith? Trust? Surrender?

For me, in this journey with Joseph, it seems to be hope. I used to hope for recovery, and then I shut down around that and stopped hoping pretty much altogether.

Now I want to cultivate hope again. I hope for continued intimacy, continued growth, and continued breakthroughs.

It’s been said that many of the great achievements of the world were accomplished by tired, discouraged — and, may I add, anxious — people who kept on working. That is a really good adage for us autism parents.

The thing about hope is that it’s a risk. To hope is to risk pain. But to live a life fully open and fully lived, we must risk. We must hope. We must continue on.

And every now and then we get some sweet, blessed, blessed encouragement. Yea.

Wishing you strength, courage, and hope on your journey.