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I have a close friend who is deeply Christian. This is unusual, because generally I steer clear of Christians — for the sole reason that they tend to regard my spiritual outlook as, well, dead wrong. I get the impression that, though they think I’m a nice person, they also think I’m headed straight for hell once this earth journey is over. I don’t mind if they think that, but it doesn’t make for close friendships.

For this reason it took me a long time to mention A Course of Love to my friend Ellen. After all, A Course of Love (ACOL) is said to be Jesus’ words coming through Mari, a woman who is alive and well in this day and age. When I did finally mention that I was co-leading a group on Friday mornings, I hoped we could leave it at that. But she’s seen how this course has shifted me, so she asked for specifics and even indicated an interest in attending. I gathered up my courage and explained how ACOL came about, dreading an anticipated response that the Bible was Jesus’ only true word and the only one we’ll ever need.

Ellen is a surprising person, though, which I guess is why she’s my only Christian friend. She said, God spoke through prophets way before Jesus’ time. Why wouldn’t Jesus continue to speak to us now? Then she attended and felt that the words really spoke to her. I don’t know if the course will stick for her, but I am really, really impressed that she attended.

It is amazing to feel Jeshua (most ACOL people refer to Jesus in this way, which is the Hebrew pronunciation) permeating my heart, mind and soul. I mean, wow, it’s like he’s whispering into my ear sometimes. That’ll change your life. For the first time ever in this life, I have actual experiences of joy.

It’s interesting to feel so fed spiritually on the one hand, and to have an intense 13 year-old autistic kid on the other. I understand why so many families stop having kids after an autistic one shows up – they are a lot of work! Add to that the hormones and turbulence of teenagerdom and, wow, that’ll change your life too.

I am so grateful that Joseph has friends. He invited his two besties over last week to hang out. It was the first visit for one kid, the sweetest Aspie (Aspergers) kid I’ve ever met. Within the first five minutes, he’d pointed out the spider web in my dining room, but never mind. We autism parents overlook that kind of thing. 😉

For the last few months I have taught yoga to Joseph’s 6th grade class in the barely-clandestine hope of getting him interested in it. While it succeeded with most of the girls, it’s been an “Eh” experience for the boys, which I can understand. Most hatha yoga classes are 95% female, after all.

Through the years, Blue Eyes and I have tried to get Joseph interested in yoga and meditation. It would be so good for his anxiety – and everything else too! But Joseph has resisted it at every turn, so we have dropped the subject for the last few years.

However. Tonight I was listening to an amazing guided meditation by a man associated with ACOL, someone Jeshua speaks through. It led me to a very deep place and I experienced the Christ presence pouring through me. I can’t remember the details of the conversation with Joseph, but later on we were talking and I said, “Well yeah, especially when Jesus is speaking to you.”

“WHAT?” Joseph exclaimed. “JESUS?” We talked about Jesus coming through these channels, and he was incredibly interested. I realized that, for him, Jesus was some dude from way back when who’d told people to love each other and who’d been dead for a long time. “How can I talk to these people?” He asked me. “There’s so much I want to know about my future.” I said that the message from Jeshua was to learn to listen within, to get quiet enough to hear that still, small voice in oneself. It’s about a relationship between each one of us and him.

Joseph asked some questions then about meditation, and I guided him through a 5-minute session. It ended very positively, and we agreed that we’d do that every night before bed.

Once again, wow. Not only does Jeshua still speak and write, he also still works miracles. A little meditation practice could go a long way in helping my kiddo through the teen crazies. Thank you, God.

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.

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.

 

 

 

 

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.

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.

 

IFJoseph turned ten yesterday. He had a wonderful day and was greatly celebrated both at home and at school. This morning he came into our room in a grumpy mood. With deep feeling he said, “I want it to be my birthday again today!”

Wouldn’t it be nice to be greatly celebrated every day? In this spirit, I am working on seeing what’s good about the people in my life and acknowledging that to them. I have a friend who, when her husband comes home in the evening, says, “Thanks for going to work today.” A small thing, but a big small thing. I think about how I would feel if I got thanked for making the dinner or doing the dishes or just for who I am. I want to notice those things in others. There is, after all, so much good in people — in the world in general. If we have the eyes to see.

When Joseph was little, I used a Halloween analogy to explain God. You know how people dress up in all kinds of costumes on Halloween? I’d ask. Well, every day is Halloween to God. God dresses up like you and me and every single person in the world. God dresses up as light, as color, as sound, as plants, as animals. And the trick is to see God through those disguises, because s/he is right there!

When you gaze out at the ocean, Yogananda said, You will be looking directly at me, United with my Beloved on the altar of the horizon.

God even dresses up as autism. It’s not God’s best look, to my way of thinking, but nonetheless there He is. When I look beyond the veil of flapping and tantrums and lack of eye contact, I see Her. I don’t know why God chose this particular costume, but why not? God is, if nothing else, playful and mysterious.

The divine play, the yogis say. The lila. When we celebrate the lila and the many costumes of God, then we are able to see God behind the whole adventure.

Spirituality to me means having a joyous spirit. I don’t know about you, but I am at my most joyous when I remember who is throwing the party, and when I realize that we are all merely players in a play. Then I smile inside. Then I feel that Presence within, around, everywhere. And I celebrate.

There You Go Again

~ by Adyashanti

Ever since I stepped out of imagination
and into the heart of things
I have become so much less spiritual.

Heaven, hell and earth
hold no meaning for me anymore.
For I am neither coming
nor going, nor staying put.

All I do is notice all the various ways
that Light weaves itself into dreams.
When someone asks me who they are,
or what God is…
I smile inside and whisper to the Light:
There you go again… pretending…

Wishing you a day of celebration. Because wherever you go, and whatever you encounter, God is.

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

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.

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Blue Eyes and I strongly suspect that the head pastor of our church has been a yogi in the past.

If we told Pastor Rylan this, he’d probably fall off his chair laughing. Nonetheless, he is so expansive in his thinking, and so naturally attuned to yogic philosophy, that we are pretty sure we’ve got a yogi pastor. It’s what keeps us coming back to a Christian church.

Another thing we love about this guy is that he’s authentic. For one thing, he is totally up front about his struggles with depression. Sometimes the depression so strong that it obviously takes everything he has just to stand up in front of everyone for a few minutes to introduce the speaker on Sunday. I appreciate that someone who runs a large church, who serves as counselor, leader, deliverer of God’s word, can be so human as to admit this challenge. Definitely not the stereotypical Christian who goes around church with a plastic smile on his face.

This last Sunday, Rylan spoke about a long road trip he had recently taken. A family man, it was a big deal to spend a few days alone on the road, and when he arrived at his destination he was planning to go into seclusion for a week.

So he’s driving along, listening to one of his mentors speak about prayer. Rylan knows that what comes next on the CD is a talk about seclusion, and he’s eagerly waiting for the prayer part to end so that he can get some pointers for his silent retreat. Suddenly God speaks to him:

“Rylan, listen to this part. It’s for you!”

God continues, telling Rylan that he spends a lot of time thinking about Him, reading about Him, and talking about Him, but he spends almost no time talking to Him. This, God continues, is the reason for his doubt, depression, feelings of incompetence and insecurity. God says to Rylan, “I love you too much to let you go on in this way.”

Wow. Talk about a game-changer! Since listening to Rylan I’ve been much more actively speaking to God out loud, mentally, and without words, in my heart.

Maybe, in God’s perspective, we are all autistic! I mean, think about autism and then think about us:

People with severe autism don’t respond when you call their names. Well, how often do we listen when God calls our names, I wonder. How often do we even hear a call? I’m pretty sure we’re getting called, and I’m equally sure that, speaking for myself, I don’t hear it more often than I do.

People with autism engage in stimming, those repetitive behaviors that calm them down and make the rest of the world disappear. How do I stim, I ask myself. The answer comes quickly: Addictions, materialism, unhelpful habits of thinking and behaving that make me so forgetful of my larger, spiritual nature.

Making friends is difficult for people with autism — they have a hard time relating. How about that friendship with God? I’ve heard it said that God is the nearest of the near; the dearest of the dear. Do we get that? Most of us feel we can’t relate to God, and so we give up before we even start. When it comes to God, we have a social disorder.

I was writing this when Blue Eyes happened by. “What defines autism to you?” I asked him. With additional food for fodder, I continue:

People with autism simply don’t see certain things because they’re so self-involved. ‘Nuf said.

Lastly, with autism, communication is a one-way street. Ha! We’re so locked into our own little worlds that we rarely reach out to God. Maybe, from God’s perspective, there’s very little reciprocity.

But once in a while, as with Pastor Rylan, there is an opening. And when there is, God takes it, hoping for the best.

I’m going to start working on my own autism. Time to really (I mean really) speak to God, reach out to God, let God shake up my comfortable little universe.  Time to become aware of, and relinquish, the soothing repetitive habits that block my higher nature. Time to look for God, listen to God, respond when I hear my name called.

And, of course, talk to God. Just open up my heart and my mind, and say it all to Him/Her. I am ready for recovery!

Many spiritual teachers say that the epidemic of autism is a symbol for the rest of us. Could this be what they mean?

Twenty-two years ago, on Labor Day Monday, our house burned down. Blue Eyes and I were working fifteen miles away when we got the call.fire

It was a neighbor on the phone. He said, “I don’t know how to tell you this, but your house burned up and everything you own is gone.”

“Everything?” I asked, unbelieving.

“Yes, everything,” he answered.

“Everything?” I asked, incredulous.

“Yes, everything,” he answered again.

“EVERYTHING????” I asked, as the reality started to sink in.

“Yes, everything,” he answered.

Toward the end of our drive home, we turned onto our rural road and five fire trucks passed us, one at a time. We knew where they’d been, and we knew that nothing was left.

Ashes. Everything we’d owned was ashes.

The fire had been put out, but the burn continued. It felt like a burning to lose so many of the things I loved. It burned to have no clothing, no photos, no toothbrush. It burned to have nowhere to live. It especially burned to be helpless, to be so in need of other people’s generosity.

One of the things I remember most about that time was that, only days after the fire, I went to a business convention with a colleague. One of the booths was giving out free t-shirts, as they often do, but they had a restriction: only one per company.

They were really nice shirts. George and I looked at each other. “Oh, go ahead,” I told him. However, I said it with an agenda: George knew of my situation, so I was pretty sure he’d insist I take the shirt.

He didn’t. Happily, and with some greed, he claimed a shirt in his size and walked away.

I remember that burn, too: the indignant burn of one more nice thing that had come close to my grasp and slipped away.

I only write about this because this morning I was listening to Gangaji, and she talked about the burn. I didn’t know anyone else had ever defined it as a burn, so it caught my interest. She spoke of our wants, our desires, and how, when we don’t get them, it burns.

That’s why autism can burn. It’s the club we never wanted to join. It’s taking our kids to the social skills group when we’d rather they be in scouts. It’s staying home from the crowded gatherings when we’d rather be part of the gang. It’s often a slow, steady burn, but sometimes it bursts into flames.

One of our biggest personal burns centers around music. Blue Eyes and I are very musical, but whenever we try to play music, whether it’s live or on a CD, Joseph has screamed, cried, and basically thrown a fit. We have let that control us for many years now.

jamboxRecently I taught a yoga class, but arrived without anything to play my music on. A student came forward with his Jambox, a  great-sounding little speaker that played my music beautifully. I was so pleased that I came home and ordered one for myself.

How, though, to deal with the Joseph Factor? — I wondered. I decided to start in one place: my bathroom. When I took my morning shower, I played music, loud enough that I could hear it with water raining down around my ears. When Joseph complained, which, of course, he did, I expressed empathy, but told him it was my  Jambox and I could do what I wanted with it.  If he didn’t like it, he was welcome to leave the area.

After a few times, the crying, moaning and complaining stopped. Then he started hanging out in the bedroom next to the shower so that he could listen to the music.

Then Blue Eyes started playing while he took his shower. No complaints this time.

My next push is going to be to play a little bit of Jambox while I make dinner. This ought to be good. Get ready to burn, Joseph.

He still hates my harmonium (keyboard) playing, though. I used this to my advantage the other day. Joseph was messing around, taking a long time to get ready for bed. I was nagging him to stay focused, hurry up, and all the other parental drones that happen around bedtime. Then my Love and Logic training kicked in, and I stopped nagging.

I remembered that I can’t control Joseph. The only person I can control, with any success at all, is myself.

So I said to Joseph, “I’m feeling stressed that you’re messing around at bedtime. I’m going to go play  my harmonium in order to calm myself down.”

It was great. “No, Mom!” Joseph said, ‘I’ll focus! I’m focusing now!”

And indeed he did. For a few minutes. Then he forgot and started mucking around again.

I didn’t say a word. Just sat down and played a lovely, uplifting chant on my harmonium.

By the time it was over, I felt better and Joseph was completely ready for bed. Can’t beat that!

In the Hindu world, the fire ceremony is a sacred act of purification. You offer into the fire all the obstacles, desires, etc that are blocking you from Self-realization — from knowing your oneness with the Divine. Twenty-two years ago, Blue Eyes and I had a big, real-life fire ceremony, but, happily (I guess) the burning continues.

My wish for you and for me is that we experience the burning with gratitude and awareness, knowing that what is being burnt is all that is non-essential to our highest Selves.

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.

Relax — this is not a post espousing Christine doctrines; Yoga Mother is not the type to do that. This is about a more personal kind of crucifixion.

This past weekend was  a very interesting one for our family. We rent out the small cottage on our property as a vacation rental. Usually people come, enjoy whatever they’re here for, and go. Sometimes we meet them and exchange a few words; often we don’t.

This time it was completely different. A man named Eban got lost finding our place, gave up, and then crashed his car heading somewhere else. Blue Eyes picked him up to bring him here and, from that moment on, he was part of our lives. A man in his late sixties, he needed to be driven here and there; he needed emotional support dealing with the car; he came over for meals.

During all this, we talked. He is a psychotherapist and had some really valuable things to say about the autism in our lives.

crucifixion-altarpiece-detail.jpg!BlogIt is a crucifixion, he said: The ego is getting crucified. What is the ego? I’ve heard it defined as the part of us that says, “Yeah, but.”

Yeah, but I didn’t sign up for autism.
Yeah, but everyone else has it so much easier.
Yeah, but I don’t WANT it to be this way.
Yeah, but…(What’s yours?)

Terese and I took our boys to the playground yesterday. Her autistic son scared a little boy by going down the slide right after him, basically pushing him down. His mom rushed over, picked up her son to hug and comfort him, and then took her kids to the lower playground to get away from us. Eventually we went there too, and again Terese’s boy disturbed the younger one. The mom threw Teresa a really dirty look, gathered her kids, and left.

And so another nail got hammered through Terese’s hand. Another sword punctured her side.

Yeah, but I’m a good mother. It’s not my fault my kid acts like that. Why are people so judgmental?

Eban says that it’s all about vulnerability. Look at Jesus, he said: A great master with all the powers in the world, he nonetheless made himself completely vulnerable.

“Yeah, but look where that got him,” I answered (notice my yeah, but).

“Ah, and look what happened after that!” he responded.

The resurrection.

It hurts, this thing called autism. This man who magically appeared in our lives says to let it hurt; to be vulnerable enough to open to the pain. In this way, he says, we can be molded. In the suffering, he says, there is grace. Find the grace.

I don’t claim that autism has the monopoly on crucifixions. Most of us have the so-called grace of something that crucifies our egos! Mine happens to be autism.

And so I wish us vulnerability. I wish us trust that God loves us so much, and knows us so dearly, that S/He gave us our particular crucifixion. I wish us freedom from false identifications (another definition of the ego: The soul identified with the body/mind) so that we resurrect in our full glory as unlimited beings, as children of the light. May we truly know that we are spiritual beings having a human experience.

May we open in surrender.

Into Thy hands, oh Lord, do I commend my spirit.

Have you ever struggled with a problem for years and years? Doubted and worried and despaired about something for a long time?

I have. For many years, Blue Eyes and I have struggled over the issue of who would look after Joseph if our demise should come unexpectedly early. Our solution — not dying — is a good one, but not, ahem, entirely under our control.

Asking someone to take on a child with autism is tough. When it came to naming a guardian for Joseph, Blue Eyes and I felt that we would be placing a heavy burden on whoever we asked.

This wasn’t the case with my friend, Maya. She called her brother to ask if she could name him as her (neurotypical) son’s guardian. He replied that he’d love that. But the bad news, he continued, was that he was going to have to kill her so that he could be sure to have the kid.

Sweet, huh? We didn’t get quite the same response when we asked some relatives to be Joseph’s guardian. We got a no — and I understand. Perhaps, were the roles reversed, I would be the one saying that.

Who takes on an autistic kid voluntarily? I wouldn’t have done it in a sane, rational mind-set. On the soul level I obviously chose it, but most of us folks with skin on operate rationally.

It’s just different living with autism. Your kid needs you a lot more than the typical kid. You don’t get the same opportunities you might otherwise get. It’s restricting. While it has its own rewards, it doesn’t give one the satisfaction one has with a typical child. It’s draining. It’s exhausting. And you don’t know if it will end with their adulthood. You don’t know if it will ever end.

What are we supposed to do — ask someone we love to take on this eternal intensity? As I said, this question has had its tentacles running through our lives for many years.

I have a friend who runs several adoption agencies. She says there are, indeed, families who open their arms to special needs children. They welcome them — they want them. These people have a calling I don’t have. They must be saints. It’s good to know that these people are out there.

For some years, that was our plan: if we were to die while Joseph was a minor, he would go to one of these families. It was sad to think of turning him over to someone he didn’t even know, but it was the best solution we could come up with. But then we had to ask, what about when he was an adult? What if he couldn’t be independent? Ugh. Nasty, ugly dilemma.

Not long ago we had another inspiration: We have a friend, Robert, who we consult with from time to time about autism. He knows Joseph well, we like his values, and he and his wife already have children, so they get parenthood. With trembling fingers we sent an email popping the question (we figured an email would give him time to think and discuss with his wife).

They said yes. They said yes! People want Joseph – people who would go into this with their eyes wide open. God bless this man and his wife. We are so fortunate to have them in our lives.

Something in me came unglued, in the best way possible, when we got that yes. A tight fist released. A held breath let go. The shoulders dropped a couple of inches.

“Why do you doubt?” Yogananda once asked one of his disciples. Indeed, why do we doubt? Everything is a symbol for everything, I think. Worrying so long and intensely about guardianship is a reflection on my own self-doubts. Who, after all, looks after me? Does Someone really do so?

Lately I’ve been meditating on the word let. Let means invite, open the door, allow, choose. I let myself feel supported. I let God show me the way. Robert and his wife let in the possibility of a real life-changer by saying yes to guardianship.

Always there is the presence of God, right here and right now. All we have to do is let that presence in. It’s a sweet, simple shift: a heart opens, a mind stills, a prayer ushers forth, and there God is. There God always is.

Why do we doubt? I guess because all the best stuff — the angels that surround us, the love that’s constantly flowing to us, God’s whisper in our hearts — is quiet, is invisible, is behind the veil. If we could just know we were held, we could stop trying so hard to hold ourselves — and others — up.

May you and I let in the angels, the love, and the still, small voices. May we let in the possibility of a Guardian way beyond anything we can figure out with these rational minds.

May we know, in the depths of our being, that this Guardian looks at us, with all our goods and bads, and, with infinite love and not a moment’s hesitation, says, “Yes.”

Here’s to the pilot that weathered the storm. — George Canning

Joseph’s only been in second grade for a couple of weeks but it seems that, academically, this is where the feces starts to hit the rotating oscillator. Joseph asks me, “Can I go back to Kindergarten? Kindergarten was fun.”

Sigh. No, Joseph, you can’t go back. You must weather the storm as best you can, even as the intensity increases. That’s all any of us can do.

Tonight was Back to School Night, where the parents drop their kids off in the cafeteria to watch cartoons while they visit their kids’ classrooms and hear a talk by the teacher.

The cafeteria is not a fun place for Joseph. It is noisy and full of unpredictable kids. Blue Eyes and I discussed ahead of time that we might need to do what we did last year when Joseph couldn’t handle it: He and Joseph would walk around the campus while I visited the classroom. Afterward, we would go to the ice cream social as a family.

But life is messy, and autism makes it messier still. Joseph indeed couldn’t stay in the cafeteria for cartoons, so he and Blue Eyes hung out. Blue Eyes was feeling sick, so, after fulfilling his duty with Joseph, he went and lay down in the car. Joseph and I headed into the cafeteria for the ice cream social and stood in line. Around us kids loudly goofed around, and parents talked and laughed. The sounds ricocheted around the  room with a life of their own.

Joseph’s shoulders edged up toward his ears. His jaw set and he started wriggling around, as if trying to physically remove himself from the situation. But the ice cream wasn’t far away, and he managed to keep himself together enough to attain the coveted goal.

I admire the way Joseph navigates the world, managing his sensitivities. In this case, Joseph wanted the ice cream but not the social. As soon as we got the ice cream, he suggested we eat somewhere outside the cafeteria. He chose a spot out by the playground. No one else around — just him and me. The sun was setting and the clouds were peachy fire. The goats nearby maaaahhhhed and the breeze blew softly on us. It wasn’t the ice cream social, but it was lovely.

Not a bad way to weather the storm, really.

He is starting to think about two things more often: God, and his future living situation. You know me — I’m loving the talks about God. Is God big? Yes, but he’s also teeny tiny. Did God make the rivers? Yes, but he also is the river. God is the drop and God is the ocean. And that big ocean? It’s completely contained in the drop. I could talk about this forever.

So far, Joseph envisions his future living situation like this: a house next to Blue Eyes’ and mine, one that he helps to build, with lots of pets and a swimming pool. Oh, and no girlfriend or wife.

Kind of like an ice cream social without the social.

Maybe this is how Joseph will navigate through his future. Maybe things will change and he will want that girlfriend or wife — or at least a housemate or two with skin on. I am willing to leave these things unanswered for now, and to honor the way my son chooses to carve out his life.

Though his choices may well navigate him out of the noisy cafeteria, I pray that — like tonight — he ends up in a place that feeds his body, stimulates his mind, and nurtures his soul.

Lately I’ve been talking to parents with really challenging autistic kids.

Now, without a doubt my kid is challenging. But he’s not violent to other kids. He doesn’t consistently disrupt his class to the extent that he gets moved to the severely impaired classroom. He doesn’t pinch his sister, consistently and hard, and absolutely deny the accusations. He doesn’t refuse to go poop in the toilet and go daily, instead, in his underwear at the age of six. He doesn’t come at me with knives.

That last paragraph is full of true situations. It’s full also of exhausted, bewildered parents.

A mom I spoke with today thought she was the only one who ever lost it with her special-needs kid and laid into him with anger. Ha! These kiddos seem to specialize in taking us to our edge — and often over our edge. I think that we parents, while working to control our emotions, need at the same time to be compassionate with ourselves. Our road is not easy, and adding guilt and shame creates a heaviness that makes it even harder to run the race.

And what a race it is. Not a sprint but possibly a lifelong marathon; not an easy lope but an intense run littered with potholes and unexpected obstacles.

Here’s what I’m learning from these parents: even as they struggle with the race, the race is struggling with them. It takes ordinary people and makes them do extraordinary things. It gives them more patience, compassion and insight than you’ll find in many others. It breaks them open so that God can come strongly through.

It is humiliation causing humility.

When I lived in spiritual community, a 12-step group came for the weekend. The minister doing Sunday service spoke about how, when you are really in a state of need, it’s so much easier to call on God. He said, “It almost makes you wish you were an alcoholic!”

The 12-Steppers were very upset about that.

But still. There is something to needing God urgently that makes us so much less complacent than the average bear. I don’t think God cares if we have cancer, or have been in a horrible accident, or have an autistic child, if it brings us closer to him/her. That is, after all, the end goal. The means is simply a means.

So how do we approach this marathon we’ve been given? I like what it says in Hebrews:

And let us run with endurance the race God has set before us.

As the Olympics begin, I ponder one of the competitors, Oscar Pistorius. He is called the Blade Runner, or the fastest runner on no legs. A South African, this man runs with incredible speed using prostheses. He says, and I’m putting it in its own paragraph to give it emphasis:

You are not disabled by the disabilities you have. You are able by the abilities you have.

Now, here is an ordinary man doing extraordinary things, literally running the race God has set before him with endurance. And courage. He inspires me to think, not of Joseph’s disabilities, but of the things that truly make him able.
And me, too.

If Oscar can run the race with endurance, so can we. Living bravely, remembering that this is all a play of God, we too can be made into  extraordinary people.

Let’s do it, shall we? I mean, we’ve been handed this race called autism. What would it mean to run like the wind, even if we have no legs?

Blessings.

My father-in-law, who I never got to meet, made a deathbed prediction about each of his three children. His family was around him and he spoke with all the power of a man from whose eyes the physical, worldly scales were lifting.  He pronounced that his youngest daughter, Jeni, would surprise them all. Turning to his oldest daughter he said, “God help the man who marries Karen.”

Then he made his prediction about Blue Eyes.

He said that some scheming bitch would get him.

You can imagine that my future in-laws did not welcome me with open arms.

When I meet my father-in-law on the other side, he and I will have a score to settle.

Nevertheless, he wasn’t entirely wrong. While I am rarely a bitch, I do scheme. Not so much with Blue Eyes, but definitely with Joseph.

For instance. If you have a kid anywhere around 7 years old, you have probably heard of the Froggy books. Endearing and funny, Joseph loves them all. In every Froggy book, characters call out, “FRROOGGGYY!” and Froggy answers, “Wha-a-a-a-t?”

(Stop right there. Often autistic kids don’t answer when you call their name. We had already overcome this hurdle but, if it’s one of your challenges, get the Froggy books!)

When I read these to Joseph, or when he reads them himself, we say “Wha-a-a-a-t?” in a musical tone. One day I noticed that, when I called Joseph’s name, he responded to me with “Wha-a-a-a-t?” in the same musical way.

Hmmm, thought I. He is starting to imitate the Froggy books. So I got online and ordered a few of the books that might serve my future purposes. I chose Froggy Eats Out, Froggy Plays in the Band, and Froggy Goes to Camp with the thought that Joseph might learn to 1) Be more comfortable eating in a restaurant, 2) Be less sensitive to live music and 3) Go away to summer camp.

Our church offers a 3-night residential summer camp for kids in grades 2-5. I’d mentioned it several times to Joseph but each time he’d responded with an angry outburst: “I don’t WANT to go!”

I understood. So many unknowns, potential noise, unpredictable children, unfamiliar surroundings. It would be great for him, I thought, but how do you get a fearful, anxious kid to want to do something like that?

I said no more about it and simply read Froggy Goes to Camp with him. That book turned out to be a favorite. I cannot tell you how many times we’ve read it and laughed at the antics of Froggy and the others at summer camp.

Then it happened. One day we were leaving Sunday School when Joseph happened to look up at the monitor. There were pictures of kids swimming, boating, and generally having a great time. “What’s that?” he asked. “Oh, that’s summer camp,” I said, as casually as I could.

“I want to go!” Joseph said. I explained that it was 3 whole nights away. “I want to go!” Joseph said.

I discussed it with the guy in charge. Unbeknownst to us, they had assigned a woman to be Joseph’s aide at Sunday School — someone with special needs experience, who knew to hang back unless she was needed. Isn’t that nice? We all felt that Joseph needed someone with him at camp, and they felt that it ought to be a man who could sleep in the cabin with the boys.

So Blue Eyes and Joseph are away at summer camp. Last night was the first night and it sounded like it was going really well.

Honestly, even with all my scheming I didn’t really believe this would happen.

Things cycle in and out with autism. Joseph’s little fears, which had previously receded, have been making a re-entry. All of a sudden he won’t eat outside because of bees. Swimming in the pond is scary because of dragonflies. The other day he screamed in terror because there was a deer nearby.

But yesterday we were driving along and I commented on how quiet Joseph was. “What are you thinking about?” I asked. “Camp,” he replied. “It’s going to be really, really fun!”

It is rare for Joseph to look forward to something new. Dear God, please let it be really, really fun.

I’ve got a quiet house for a few days. Think I’ll use the time to scheme up something new.

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.

Our church had a fun bounce house set up for the kids this past Sunday. Us parents chatted as we watched our kids leap and tumble about. Blue Eyes and I got into a conversation with a man who told us that he had five kids: four girls and one boy.

“What I didn’t know about girls,” he said, “is that they cry so much!” I assured him that it never really stops, and we smiled together. Then he pointed out some of his girls, one of whom was standing at the entrance to the bounce house — sobbing her little eyes out. Blue Eyes patted him on the shoulder and said, “Sainthood is just around the corner for you, mate!”

I loved this man’s response.

He said, “Not me. I’m just broken all the way through.”

I’ve thought about this broken-all-the-way-through concept ever since. I mean, really, what is a saint but someone who is broken all the way through? Saints are known for their humility, for their understanding that they are not the doer. At the same time, this brokenness, this submission, allows the light to shine — bright and unhindered — right through them.

Look at Mother Theresa. As the “saint of the gutter,” she often performed the lowest of tasks. She couldn’t have done that if she wasn’t broken all the way through. Yet she could be fierce when necessary. She was one tough lady on a mission from God.

The way I see it, God breaks us in order to use us more completely. That’s why Mother Theresa, while being completely humble, was a force to be reckoned with.

Here’s one of the great things about having an autistic child: it breaks us. Not just once either, as it would if some horrific event occurred and then was over. It’s a daily, hourly, sometimes moment-by-moment breakage.

Just for a moment, imagine you’re in your soul-body looking at what you’d like to learn in your coming lifetime. Maybe it’s major doses of humility, surrender, and openness. But how to accomplish such amazing gains in one short lifetime?

“I’ve got an idea!” your guide says. “How about you have a child who relentlessly challenges you and requires constant looking after. A child who may always be a child, no matter how old s/he gets. A child who doesn’t understand social norms and so embarrasses you in public many times over. Can you imagine how much that would teach you?”

“Yeah, baby!” your soul-self says. “That’s what I’m talking about! ” And into this life you leap.

As hard as it is having this very different kid, my soul self is content. The desperate clawing — the wishing, hoping and praying that the situation was otherwise — marinates slowly with the balm of acceptance and surrender. Daily I am more broken and, when I am in the God Zone, I feel my heart getting more peaceful because of it.

Hinduism has a trinity God-head: Brahma, Vishnu and Shiva. Brahma is the creator of all of life. Vishnu preserves it, and Shiva? Well, Shiva is the destroyer.

You may ask, what is a destroyer — a God of death and destruction — doing among the top three Gods? Lord Shiva, you see, destroys all that is false within us. He destroys particularly the ego, which includes delusions, desires and attachments.

The energy of destruction associated with Lord Shiva has great purifying power. Destruction opens the path for a new creation, a new opportunity for beauty and truth.

So hip hip hooray for our autistic children who, by breaking us all the way through, destroy our false desires and illusions.

May we remember, now and then at least, that Lord Shiva’s dance of death and destruction represents the most essential goodness. May we remember, now and then, that powerful things are happening within us because of our journeys.

Lastly, may we open and surrender to that power of good — so that, as saints in the making, it may flow through us ever more freely.

Blessings.

Recently I came across a piece of writing I’d done in 2008, which I’d entitled A Dark Time. From this vantage point, I can see that I was severely depressed when I wrote it, and I warn you: it’s not pretty. It’s my Secret Demon Thoughts and I never thought I’d share them, but something compels me to do so. Perhaps it’s for those who are newly on this autism road, those who need to know they aren’t the first to be in despair.

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Something’s not right with Joseph, and it’s definitely not right with me. I am pretty well as low as I get. I am crying constantly. I have bags under my eyes. I can’t bring myself to exercise. Nights are an occasion for dread, and the only way I can deal with them is by drugging myself. This brings on a sleep that isn’t really a sleep, so I wake up already tired and unbearably sad.

That’s how I feel, really: unbearably sad. I am so tired of Joseph and of being his mommy. I am also tired of Blue Eyes and being his wife.  I hate the financial pressures we’re under. I am sick of the financial demands of the biomedical autism industry. I feel claustrophobic in our house,and Joseph is such a pill that leaving the house is almost not worth the trouble. I’m tired of trying – of being the “up” RDI mom, of being so committed to the cause of curing my kid of autism. I want my life back. I don’t want the life I have.

I don’t want to see Joseph for another moment. I can’t stand him. I hate him. I hate being his mom.

The feeling I have about Joseph right now is like something creepy on your skin – I want it OFF. And I hate feeling that way about him. I beat up on myself that I feel that way. But in a very real way, he is the cause of all this pain and discomfort, so it’s easy to blame him.

I’m tired of trying to stay so damn conscious during all of this. I don’t want to use it anymore for my spiritual growth. I want it taken away. I want Joseph to get hit by a car so that he’s just gone, it’s over, no more. Give away the toys, the  books, the clothes to some other children and get our lives back. Sleep. Go on vacation. Enjoy ourselves. Read books. Meditate. Find ourselves again. Go into silence and seclusion for a month. Go on a huge backpacking trip, Blue Eyes and me, in some indescribably beautiful place for a long time.

Why do I have to go to an RDI Conference for my vacation? Why do I have to go fight for my son’s life, keep pulling him out by the fingernails, when I’d rather drop him in and let him go? Is it just that I’m so tired? Where did my motivation go?

What a black, black space. I want to fight it and yet it holds me here,  not loosening its grip. You’re not done here, it tells me. There’s more to see. Hang on a little longer. I think longingly of friends I could call, people who could listen and talk back and help me out of this. But then I talk to them and it doesn’t help. I think this is between me and the Darkness.

I feel like I’m falling to pieces. I don’t see any way out.

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I remember those days — although, thankfully, they are fading into that lovely faraway place where the sound is dulled and the edges aren’t so sharp. But parents all over the world are going through what Blue Eyes and I went through. I don’t think us ASD parents talk enough about the bad stuff, like wishing our child would get hit by a car so it could be over. One of my intentions, when I started this blog, was to be completely authentic. Saying the bad stuff is part of that — so, yes, when it was really bad I got so low that I wished my kid was dead.

Things are so much better now. I was in the kitchen this evening and Joseph was pestering me: poking me and teasing me and just plain bugging me. I realized he wanted my attention, so I sat down and started teasing him back. We had a great, goofy time together and I took it for granted. Until I sat down and re-read those words I’d written in 2008.

What I didn’t know in 2008 was that it gets easier. Even if Joseph had never improved, I have changed. I have gotten stronger. I’ve discovered resources to help me through. I’ve found people and programs to help shoulder the burden so that we’re not alone.

And then there’s that lovely concept: acceptance. One of the great gifts Joseph has brought me is a deeper acceptance of things simply being the way they are. Resisting brings misery. Acceptance brings freedom.

I still work on acceptance. Just yesterday I ran into an old friend and, while we caught up, Joseph flapped and hummed. My friend didn’t know about the autism, but there it was, in plain sight. I didn’t like it, not one bit. But after a while I remembered that, if you fight with reality, you always lose. So I stopped fighting.

What a long, strange trip life is. Our limited perspectives only see so much, but I believe that, when this lifetime’s over, I’m going to sit down with God and say, “Ohhhh, that’s why I needed a child with autism. Look at how much I grew, how much I let go of, how much compassion I gained. Thank you ever so much for that opportunity.”

Yes, I can finally say thank you. For the trials and the terrors, for the learning and the letting go, I truly am grateful. Thanks, God, for the whole long, strange trip.

Earlier this week, I picked Joseph up from school and we did the hour’s drive to the RDI consultant’s office. John had set up his neurotypical boys to interact with Joseph in a playgroup-like setting.

(Some kids get picked up from school and taken to soccer practice or music practice. In my mind, I refer to our after-school trips as “normal practice.” But I digress.)

We go into the office and the first thing John wants the kids to do is play a board game together. Now, Joseph is not a board game player. There is something about board games that he doesn’t get. So Joseph looks at the game and whines, “I don’t like board games. They’re too hard!”

It’s Chutes and Ladders, one of the easiest games in the world. I pull John aside and say,  “Joseph doesn’t do well with board games.” I’ve been cogitating on his answer ever since. He said:

“I don’t want this to be another thing that’s left out.”

When we have babies, a lot of things get left out: nights out, adult conversations, a full night’s sleep, sex — that sort of thing. But eventually things get more or less normalized and there isn’t such deprivation.

Not so with autism. Things get left out. Forever.

Recently some friends invited us to their ongoing couples’ group. They meet every other Thursday night. They bring the kids, set them up in another room with their homework and a video, and go do their thing separately. “Come along,” they said. “It’ll be great to have you.”

Sure. Take Joseph to an unfamiliar environment, set him up in a room with kids he doesn’t know, and leave him there to enjoy himself. Ha! Only in our dreams.

Another thing left out.

Blue Eyes is a builder. He works with a friend whose 3-year old boy recently threw a long tantrum because he couldn’t go to work with his dad to build with him. Blue Eyes thinks the time is near when they’ll have the kid come for a couple of hours to bang some nails and “help out.”

Blue Eyes has tried to interest Joseph in building, but Joseph feels incompetent and uncomfortable, and he shows no interest. It’s yet another place where Blue Eyes and Joseph don’t connect.

Another thing left out.

Recently we had extended family over. There were around fifteen people at our house. Joseph spent a large part of the time off by himself, telling me, “There are too many people here. It makes me nervous!”

It’s such a battle getting him comfortable in group settings that we’re considering not going to Thanksgiving gatherings any more. We’re not sure it’s worth the struggle.

Another thing left out.

The biggest thing that’s left out, in my view, is deep conversation. I want to talk with my kid about his place in our family history; I want to dialog with him about spirituality in all its nuances; I want to ask him questions about his inner life and get answers that mean something. I want him to ask me deep, interested questions. I want to teach Joseph some of the wisdom I’ve gleaned; I want him to teach me from his youthful understanding.

I want what conversations like these lead to: both parties coming up with a change in perspective, a deeper understanding of each other and the topic of discussion.  I want it, I want it, I want it.

Sigh. Another thing left out.

I know things can get better. We thought we might have to leave out living a normal life at all when Joseph was so terrified of dogs. Dogs are everywhere, and life was becoming one horrifying incident after another. But now dogs are a non-issue. So things can, and do, change. But they probably won’t change too much.

It is the way it is. I can’t fix it and I can’t change it. I am feeling sad about it. I am allowing that sorrow to fill my heart and I am sharing it with the Divine Mother, who knows all sorrows.

I recently heard a song that said God prefers the honest cry of a broken heart to a thousand hallelujahs.

Well, with the numbers of autistic children on the rise, God must be hearing some real honest cries from a lot of broken hearts.

God alone knows, but maybe that’s one of the reasons we’re given children with autism.