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Every year, as I’ve dropped Joseph off at school, I’ve marked the day when excited 6th-8th graders have gathered in the parking lot with their luggage, waiting to leave for science camp. Through the years I’ve tried not to think about science camp much, as I couldn’t imagine Joseph being one of those kids. For one thing, he wet his bed forever, first weekly or so, then monthly or so. Only in the last year has it become an extremely rare occurence. How embarrassing would it be for a preteen to wet his bed in front of his peers? Secondly, I couldn’t imagine someone who isn’t good with change coping in such a new, dynamic environment for four nights and five days.

But last year, Joseph and Blue Eyes attended the 8th grade graduation ceremony and heard the kids’ parting speeches. Many of them spoke nostalgically about science camp being one of the highlights of all their years at school. When he began 6th grade this year and science camp was discussed, Joseph decided that he wanted to go. His best friend, Dallas, was going, and that seemed to make it all ok.

science-camp-3Dallas is a wonderful young man, sweet and smart and caring. The bond between him and Joseph is lovely to see and, though I sometimes wonder why a neurotypical kid with good communication skills wants to hang with a non-neurotypical kid without such good communication skills, I am most grateful for their friendship. Who knows what draws people together? Dallas stutters but manages to get around that nicely — maybe that’s what gives him compassion for Joseph’s challenges. I once asked Joseph if they’d ever discussed Dallas’ stutters. Joseph said, “No. We don’t talk about his stutter or my flapping. It’d be too embarrassing for us both.”

That’s quite insightful, don’t you think?

But I digress. As science camp came closer, I started a major (but private) freak-out: What if Joseph didn’t sleep at night, which used to happen all the time when we slept away from home? What if he got severely constipated, which also used to happen? The reason we bought our old beater of an RV was because it became the one place besides home where Joseph would poop and sleep, and it enabled us to travel. Other than sending mail to science camp, parents were not allowed to communicate with their kids and we most certainly were not allowed to be there. How could I make sure he was okay?

Joseph’s second best friend, Allen, is in his class and is a very high-functioning spectrum kid. Allen’s parents made the decision not to let him go to science camp for the same fears I had: not sleeping and not pooping. I felt deep compassion for their choice as I lay awake at night, worrying about these very issues.

It’s been said that Satan loves it when we don’t ask for help. My fears were in charge until I finally emailed Joseph’s teacher, expressing my worries. She wrote back that the camp nurse could check in with Joseph confidentially to make sure he was pooping, and that I could give the nurse an herbal laxative to administer should Joseph need it. She reassured me of the camp schedule and said that she and all the other staff would keep an eye on Joseph to make sure he was doing okay. I cried in private to Blue Eyes, who said that yes, he’d probably be somewhat sleep-deprived, but was that problem important enough to miss this amazing opportunity?

With that reassurance, I let go. Ever since Joseph turned six and declared he was ready for neurotypical kindergarten, he has been the driver for his next steps. He wants a dog, even though he’s scared of them? We got a dog. He wants to create a CD? Our friend has helped him to record several. He wants to be on the swim team, even though he can’t dive? That happened. He wants to stop attending special-needs basketball and instead join the school basketball team? He’s on the team. He wants to go to science camp? Well, good morning, campers!

sciencecamp1Yesterday morning, Blue Eyes went and picked up Joseph and some of the other kids to bring them home. One of the boys looked like he hadn’t washed his face since he’d arrived at camp. The boys were so tired they could barely speak. Joseph, though obviously sleepy, was the most-rested kid in the car.

Expectations are choosing, in the present moment, to be disappointed at some future time. With this in mind, I worked with myself not to expect Joseph to tell me all about his experience at once. The vision I tried not to envision was sitting around the dinner table that night, hearing his camp stories.  Joseph doesn’t like to be pressured to talk (have I mentioned the lack of communication skills?).

But when I got home from work, he was ready to talk. Enough. And at dinner, he talked some more. We heard the camp songs, the camp rules; we learned about the bird sanctuary and the night hikes. We heard about the running jokes in the cabin he shared with his classmates, the very boy-behaviors at night (think stinky gas) and the unique characters on the camp staff. We got him to bed at a decent hour and he slept 10 1/2 hours.

And yes, he pooped while he was at camp. Every single day.

He and Dallas have decided they want to go there again this summer for camp. Though I am already noticing a little worry (his teacher won’t be there; who will look after him with such diligence?), I know that, this time around, letting go will be easier.

Several years ago, Joseph turned to me out of the blue and said, “You know, Mom, I won’t be living with you forever.” When autism is in the mix, parents aren’t sure if this is true. We have to look at questions other parents might not, like can they find work and perform it well enough? Do they have the skills to live independently? Can they live in a way that isn’t isolating, but that offers them friends and, dare I say, a family of their own?

The past statistics are not encouraging, but Joseph doesn’t take those into account. He hasn’t read the autism book and he’s not going to, so who knows where his trajectory will take him? The words of Kahlil Gibran come to mind, and are a most fitting way to end this post:

Your children are not your children.

They are the sons and daughters of Life’s longing for itself.

They come through you but not from you,

And though they are with you, yet they belong not to you.

You may give them your love but not your thoughts.

For they have their own thoughts.

You may house their bodies but not their souls,

For their souls dwell in the house of tomorrow,
which you cannot visit, not even in your dreams.

You may strive to be like them, but seek not to make them like you.

For life goes not backward nor tarries with yesterday.

You 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.

Blessings to all.

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’.

Yesterday I bumped into a friend. It’s funny; I can’t say she is a close friend because I see her only rarely, and yet, when we do stop to catch up, there is no small talk. Instead we go immediately to the depths of our journeys, sharing the challenges, the growth, the roads we’re on now. What is a close friend if not that?

Janine watched her husband slowly and painfully lose his mind, his voice, his body, and finally, just over a year ago, his life. Now she and the kids are carving out new footholds, healing the raw aching places, and moving forward. As Janine says, that chapter of their lives is over now and it’s time to see what’s ahead instead of what was behind.

I think about that with Joseph. I remember how, after getting through four years of not sleeping, a year of enemas, intense years of medical and alternative treatments, we saw some great breakthroughs. A dear friend said, “The worst is over.” I didn’t believe her — but, from this vantage point years later, I think she was right. The worst appears to be over.

While Joseph took a shower tonight, I ran to the piano and started to play. He’s started lessons lately and it’s inspired me to play again, the piano being one of my great loves. But I knew I could only play for a short time because, in the past, Joseph would scream and yell bloody murder if I tried to play. This time he finished his shower without me knowing it. When eventually I stopped playing, he asked if I would please continue.

(Who are you? And what have you done with my son? On second thought, never mind. I’ll keep you instead.)

One of the things I’ve deeply grieved was that I wouldn’t be able to speak of spiritual things with a child who has autism. Au contraire! My son has declared himself to be a Christian Yogi, like his parents. He is earnestly and deeply interested in spirituality. Today, after months of his urging, I finally drove him to the Catholic church so that he could see inside it. While we were there, he asked if we could go for service to every church and temple in town, so that he could see what they were like. How can you say no to a request like that?

dressed upHe’s got a big crush on one of the girls in his class. With only a little encouragement from us, he’s decided to stop picking his nose, start washing his hair, and learn to cook and clean so he can be a more eligible husband. He is even dressing up for special occasions!

While the thought of his hopes being crushed stabs my heart, all I can do is encourage him to go for it. Joseph is full of surprises, so who knows what will come?

So here, in this new chapter of our lives, I let go of the terrors of the past and turn to experience this moment. Thich Nhat Hanh says, “All the elements for your happiness are already here. There is no need to run, strive, search, or struggle. Just be. Just being in the moment in this place is the deepest meditation.”

Big exhale.

Wherever you are in your journey, I wish you hope, trust, comfort and presence.

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.

In the first years after Joseph’s diagnosis, we focused much of our energy on the biomedical side of autism. Earlier blogs have a lot to say about Joseph’s gut issues and sleep issues, and the many treatments he/we undertook. Even our first RDI Consultant admitted that there was virtually no change in Joseph their first year together, because he was simply too sick physically to advance in any other way.

Joseph was gluten-free and casein-free from ages 3 to 61/2. He was also virtually sugar-free. We saw a lot of progress in those years. Expanded vocabulary, bowels that actually moved, more social engagement. Eventually even sleep, oh thank God.

And Then There Was Public School.

In kindergarten, I made a batch of gluten-free cupcakes to stash in the teachers’ freezer as a substitute for any birthday cupcakes parents might bring in. I gave the teacher GF crackers to keep. She gave me the heads-up when anything untoward was happening, foodwise, in the classroom, and I’d scream up some reasonable facsimile.  Happily, Joseph got out before lunchtime so we mostly didn’t have to deal with what the other kids were eating — and, sigh, the hot lunches that you can buy.

When first grade hit, it was all over before we knew it. In the second week of school,  the school secretary called: Joseph had had two hot lunches already, and when were we planning to pay for them? I have yet to see a hot lunch without gluten in it, and it always comes with a container of milk.

I got a little hysterical at this news. I couldn’t decide whether to laugh or cry that my son had, of his own accord, broken the diet that had done so much for him. I called Blue Eyes, and we decided to just roll with it. Since then, we’ve been GFCF at home but not when we’re out. Two hot lunches allowed per week. It’s worked pretty dang well.

Until recently.

It started with the chewing. He’s always been a chewer of pencils and the occasional shirt collar, but suddenly he had to have something in his mouth all the time. Hankies, soaking wet and well-chewed, would hang down from his mouth. Sleeves became soaked with saliva.

Then he started stimming more. Flapping, doing his music (humming, singing) so much that he couldn’t stop it to concentrate on his homework or his food.

But worse — much worse, if you ask me — is that he began sleeping badly. Awake in the middle of the night, awake way too early in the morning. Tired and grumpy all day long. Near tears because of the tiredness. When Joseph doesn’t sleep, I don’t sleep. It was like old times — bad.

And every morning, as soon as he’d come downstairs, he’d ask for sugar. Chocolately Koala Krisps or Gorilla Munch or yogurt tubes or candy or cookies.

As much as I adore denial, I could ignore it no longer. My son has Candida.

Yeast outbreak is very common in autistic kids. In those early days we used healthy eating, Nystatin and various natural supplements to control it.

It’s different now. Sugar and starches seem to be a natural part of public school, and we have felt powerless to stop it. There’s something about a kid who is inherently different from the others telling me that “All the other kids get to eat it!” that quickly wears down my resistance. After all, I want him to be like all the other kids.

But now it feels like do — or die. So, we told him, he is off sugar for the time being.

Ohhhh it’s hard. Every day except today (so far, anyway), Joseph has had major meltdowns about missing sugar. Little does he know that this makes me all the more determined. We’ve upped the Grapefruit Seed Extract and the Corcumin. We are starting on a new product, inspired by the folks on the blog A Ventography, as soon as it arrives in the mail.

After a few days of slogging through — no sugar and no sleep and no improvement – ugh! — we are starting to see some progress. Sleep is going better and the chewing is slowing down a bit. More than that, even: Joseph is suddenly more cheerful. Can Candida make a person act like an angry, sullen teenager when he’s only eight? I don’t know, but the change is a very welcome thing.

Joseph keeps asking about Valentines Day. Can he have sugar then? Candy hearts and all the other goodies that his fellow students will give him? I am finding it  hard to say no. I am saying that it is his choice: he may be feeling so much better without sugar that he will decide to pass it up. I am not as mean as I act; this mama’s heart simply can’t say no to Valentines treats. If we have to deal with a flare-up, we’ll all learn something from it.

The older I get, the more it registers that life is full of seasons. This season is harder than some, but truly it’s just a season. I’m holding on to the concept of effort over time: the idea that effort, consistently applied over a good amount of time, will make more difference in one’s life than almost anything else.

Body, mind, emotions…it’s all so connected. It’s a microcosm of the macrocosm, because we on this earth are all deeply connected as well. Wishing you health and happiness in all of your connections.

The Way of the Peaceful Warrior is one of the books that turned me toward the spiritual life in my twenties, so it was with pleasure that I accompanied Blue Eyes to a talk that its author, Dan Millman, gave recently.

I found that every time Dan discussed being a warrior, my mind flashed on autism. When he talked about life’s waves crashing over us and pulling us down, I saw how it happened to me with autism.  And when he spoke of the concept of effort over time, I perceived it in light of Joseph’s, and our, journey with autism.

You know how you attend a talk or read a book and, if it’s a good one, you leave with one or two gems that provide clarity and direction for you? Effort over time is such a gem for me: the idea that effort, consistently applied over a good amount of time, will make more difference in one’s life than almost anything else.

I think about all the effort we put in to help Joseph’s gut problems (chronic constipation, leaky gut, candida). For 3 1/2 years he was gluten- and casein-free. He took medications and supplements, sat in oxygen chambers, suffered through glutathione shots, and –worst of all — screamed bloody murder during every-other-day enemas. It was pretty much hell on earth for all of us. But it was this effort over time that has made him the healthy boy he is today.

Then there’s RDI, the behavioral intervention we’ve been involved with for about five years. One of RDI’s slogans is It’s not a sprint — it’s a marathon. In other words, effort over time. Regular homework assignments for us parents, which include reading, learning, creating video footage of us working on objectives with Joseph, and constant incorporation of the principles into daily life. Endless discussions with our RDI Consultant, who runs the marathon with us and hands us water bottles and power bars to keep us going. Effort over time for sure.

There’s also nasty stuff, like the fact that I got so traumatized by Joseph not sleeping for four years that, three years after that difficult period, I still can’t sleep well myself. If Joseph gets up in the night to use the bathroom and I hear him, adrenaline still shoots through my body and I wake up, terrified. Recently I asked Blue Eyes what else I could do to resolve this problem and I loved his answer: Effort over time.  Oh yeah. Patience, Yoga Mother. The trauma didn’t come in a day and it seems to not be leaving in a day. But don’t give up — it’s effort over time.

Joseph being goofy

Joseph has come so far that it’s like a good dream. Earlier today I spoke with the mother of one of his classmates, and she said her daughter has a huge crush on Joseph and wants to marry him. Could I have imagined anyone saying this four years ago, when Joseph would rather stim than interact with someone? Absolutely not. It’s due to effort over time — ours, his, and the support team we’re surrounded by. Oh, and grace. Lots and lots of grace.

I know that some of you who read this are early on the autism journey. You can’t know if your effort over time will be worth it, and believe me, I know how much effort it is. It drains your life force, ages you beyond your years, takes away your life as you knew it, and threatens your sanity. But really, what choice do you have? Amazing effort now might help your child reach his or her full potential, and if you don’t do it, you’ll never know. Today is Superbowl Sunday and I watched a little vignette of huddles of football teams getting motivated before previous Superbowls. In one huddle the quarterback said, “If it works, it works. If it doesn’t, it doesn’t. So let’s just go and do our best.” Indeed. What else can you do?

How then can we approach autism, or any major trial in our lives? Effort over time, doing our best, and — if I might add one more concept — letting go of the fruits of our labors. We can control our efforts but we can’t control the results. We simply can’t, and it’s crazy-making to pretend otherwise.

I love where Joseph is now — and yet, as his peers grow older and more sophisticated, he well may not be able to keep up. Crushes on him may turn to laughter at him. I will continue my effort — that’s my business —  and I will do my best to let go of the results, because that’s God’s business.

To be honest, I’m not so great at letting go; I just plain like to be in control. So I continue to work on it, hoping to land in the body, mind and soul of the Spiritual Warrior I strive to be. This Warrior has great focus, puts in major effort over time toward a noble end and, at the same time, lets go of what that end might be.

Will I ever really become that Spiritual Warrior? Perhaps the effort alone will transform me into her. Then again, perhaps it won’t.

I’ll just do my best, pray that it’s blessed, and let God take care of the rest.

Sometimes, just before Christmas, I go to an eight-hour meditation. It’s always a stretch, but many years ago I attended one that went beyond being a stretch to become  a nightmare.

What happened was that I sat for eight hours of meditation without being able to meditate. My mind simply would not be still. I did my pranayamas (breathing techniques). I practiced my mantra. I prayed. I worked on my kriyas. But my mind kept running on and on. There was nothing I could do to calm it down so finally I stopped trying, and spent the better part of the day just watching this crazed, obsessive, unhappy mind.

It was a terrible, horrible, no good, very bad day.

The meditation finally ended and, while everyone else filed out happy and relieved, I staggered out feeling I’d just been engaged in a long, intense battle. And I’d lost.

But as I stepped out of the temple, I received this amazing realization. It was about fear. I suddenly saw, in detail, how fear had run my entire life. I felt how fearful I was in that very moment. I realized how much power I’d given to fear, how many decisions I’d made because of fear, and how fear was in charge of me, rather than the other way around.

You know when it’s a real insight, vision, whatever, because it shifts you permanently — and this one did. Since that time, I’ve been much more observant about fear – more aware of it. I haven’t always been able to get past it, but at least I’ve had more awareness about it, and it hasn’t run me as much.

What does fear have to do with autism? Ha! Even the word autism can inspire fear in people’s hearts. I believe that there is massive collective fear around autism — especially in parents of autistic children. Certainly I have had relentless, unending fears around Joseph and his autism. Fears that wake me in the middle of the night for months on end. Fears that hurt my health. Fears that cripple me in subtle, invisible, but destructive ways.

I’ve been considering these fears lately, and have realized something more: At the end of every fear, there is a question mark.

The fear can be about anything, but for me, it’s often around autism. Perhaps I’ll be running one of my familiar fears, like this one:  “Nobody will take care of Joseph after we die.”

When I dive under the layers of this fear, or any other fear, I see the question mark hanging on the end of it. The question at the foundation of every single one of my fears is…

God, are you really here with me?

That’s it. That is the question mark hanging on the end of every fear. So I’m shifting the way I deal with fear. Now it’s not about the fear. It’s about getting to know God better. It’s not a religion; it’s a relationship. I am focusing on deepening that relationship.

It’s something of a Catch 22: If I’m fearful, I can’t trust God and therefore God can’t make Him/Herself fully known to me. But the way to truly let go of fear is to let God in. Heh heh. One of those divine ironic twists that God seems to be so fond of.

The master, Paramhansa Yogananda, says, “When the consciousness is kept on God, you will have no fears; every obstacle will then be overcome by courage and faith.”

Putting my reliance on God doesn’t mean I don’t do practical things to take care of Joseph. But it does mean that, rather than acting out of lack, I act in faith and with courage. My Father/Mother/Friend is with me, now, and besides that, there are legions of angels just waiting to be called on.

I am calling on them! I am taking God at his word these days, and I feel the shift. Because I am more aware of God, I feel more abundant in every aspect of my life. And as I become aware of how I am loved and looked after, then I know that Joseph, you, all of us are loved and cared for just as much.

God is so much bigger than any of my stupid stinking fears. I’m going to be on the lookout for those fears, and for the question marks hanging on the ends of them.

Keeping my consciousness on God is no small thing, but I think of the Warrior pose in yoga. It involves strength and focus, as well as relaxation and openness. I’m going to be that Warrior, on and off the yoga mat.

I think that fear cannot exist in the same space as pure love. So when those autism fears come up, I’ll be striking the Warrior pose, relaxing into the Love that is, and watching those question marks fade away.

Blue Eyes and I met on a group pilgrimage in India. That first meeting, we sat in the hotel lobby and talked for many hours, late into the night. Though our bodies were sitting sedately on couches talking away, I had the sense that our souls were above us, dancing in the delight of their reunion.

This year we celebrated 20 years of marriage. It’s been a great marriage. For a long time we were confused about whether or not to add a child to the mix but, 13 years into our marriage, the Universe made up our minds for us.

Anyone involved in the world of autism has heard the statistic that 80% of all autism marriages fail. It’s the same difficult odds, I might add, when a child dies.

Maybe it’s not actual death, but having an autistic child is like a death. The death of dreams, of plans, of what you thought the parenting journey would be, of what you thought your marriage would be. The death of your life as you knew it.

In many marriages, autism produces a long, slow spiral downward. Truly, I can see why. The isolation of having a kid who cannot cope being with other people, the stress of having to figure out how to deal with autism, the major financial stress of medical and behavioral interventions.

I am fortunate to live in an area that had a support group for parents of young ASD children. Most of us were dealing with the above stresses and the co-occuring problems of autism, as well. Sleep, for example, was a huge issue. There were five core moms in this group, and we discovered that most of us weren’t sleeping with our husbands. For one reason or another — a mom’s fragility sleeping because of stress, a child who wouldn’t sleep through the night without a grownup with him, a parent’s inability to cope with a child’s frequent wakings — long-term sleeping separations were taking place.

This is hard. In my marriage, holding each other before or during sleep is a wonderful, and important, way to connect after a busy day apart. And, of course, when you’re not sleeping in the same bed, sex pretty much flies out the window. There goes another significant connecting point.

If you’re in a marriage and have had a recent autism diagnosis, here is my advice: Get help. Get help, get help, get help.

Part of our autism “benefits package” included eight sessions of marriage counseling. The strain didn’t go away with eight sessions, so we were granted an emergency package of eight more sessions. What a gift this was. All conflict is an effort to birth something new, and during these sessions we worked to birth a new marriage. The counseling sessions were a great start, and it still took us a long time to figure out how to be married in a way that could work with autism.

It’s like this: the chronic stress that raising a child with autism entails affects your marriage at its weakest points. So you either strengthen your weakest points, or you die.

We had to learn how to have fun again. Since we couldn’t have fun within the family (at that time, Joseph was way too challenging to be fun), Blue Eyes and I needed to go off by ourselves. This meant finding someone who could look after an autistic child. For many families, trying to find this person is huge. Few outsiders can deal with autism and the way it presents itself. We ended up hiring one of Joseph’s behavioral-intervention tutors for occasional babysitting. Karen has become a great friend who still looks after Joseph several times a month.

We also needed to nurture our own souls. Joseph was a two-parent project for a long time, but we eventually got to where one parent could go to a yoga class or group meditation while the other held down the home front.

Lastly, we stopped taking it out on each other. We slowly stopped snapping at each other and rolling our eyes at the other’s viewpoint, and learned instead how to support each other — how to be friends sharing this burden instead of struggling individually with it. A burden shared is a burden halved, right?

At this point, we are heaving big exhalations and feeling that autism is not going to be the end of us. We are treasuring each other and enjoying our family. It helps that Joseph has improved so much.

The longer I’m married, the more I realize that marriage is not a destination. It’s a journey. We are not at happily ever after, but we are at happy. After all we’ve been through, happy is a terrific place to be. I am grateful.

Are our souls still dancing in the delight of being together? I think so. All the more because, so far at least, our marriage has made it through the fiery trial of autism.

At five this morning, I was awakened by the sound of Joseph coughing in his room.

Not so long ago, this would have shot a lightning bolt of adrenaline through my body. He’s awake already! my mind would say. Today is going to be a very rough day. He’ll be sleep-deprived and he’ll be out of control with autistic behaviors.

The prospect of my going back to sleep would then have been impossible.

This morning I still felt the shot of adrenaline, but it wasn’t a lightning bolt. It was a mild electric shock that came and went. I dozed a bit more, woke up and went down the granny flat where I do my spiritual practices.

When I sat for meditation, I watched the disturbance in my mind. I have set up a strong pattern of allowing Joseph to disturb my equanimity. Since awareness is half the battle, I didn’t do anything but watch closely, almost admiring how very much I’ve allowed what Joseph does and doesn’t do to affect my mind and my emotions.

Yoga talks about how much attachment and desire can take us off-balance, and that is what I was witnessing this morning. I am attached to Joseph getting sleep so that I can have a good day. I strongly desire him to not act autistic, so that I won’t be embarrassed.

There they are: attachment and desire. The root of all suffering.

Having witnessed these things, I then took my attention to the Divine.

“You know what a screw-up I am,” I said to Him/Her. “I would like to be more even-minded, but this is what’s going on right now. No sense pretending otherwise.”

My vrittis (attachments, desires) were really whipping up a storm. My mind responded by making up what appeared to be a very realistic story: What a horrible day it was going to be. We had a social occasion with NT’s (neuro-typicals) that afternoon, and Joseph was going to be a total mess because of sleep deprivation. He’d stim, scream and say loud, inappropriate things. I’d have to spend the whole time trying to calm him down and would be completely humiliated. I should probably just cancel the whole thing.

Fact is, this all used to be true. When Joseph didn’t sleep because of gut troubles, he behaved as if he was severely impaired. It was excruciating for me.

What I was experiencing wasn’t present-day stuff, though, and I knew it. But I couldn’t keep the trauma in my being from playing out, so I watched it. Fear, worry and terror washed over me in crashing waves. I stayed present to it, as best I could.

Then it was done. Some traumatized part of me had needed to be listened to, and I’d managed to listen. I landed back in my body, breathed some, prayed some, and gave God a deep pranam (bow).

It was around seven when I walked into Joseph’s room. He came down for breakfast and then said he was tired. He crawled into bed and slept for two hours. The rest of the day was great.

Last night I dreamed I was a war veteran. I don’t know much about post-traumatic stress disorder, but I wonder if I have it. No matter. I trust the process. I honor the process.

If this is how I am to let go of the past and move forward, then so be it. Bring it on, God! I am ready.

I love our meditation group. Every Tuesday night, friends — old and new — come over to join in meditation together.

We started it a year ago and it was a huge stretch, given that we were exhausted physically, mentally and spiritually from our journey with Joseph. One of the biggest obstacles was that I didn’t feel I had the energy to get the house clean every week — much less have any spiritual clarity or inspiration to share.

But here’s the thing: it wanted to happen. So I got out of the way and let it happen. Now I find that it’s easy to keep the house up. Instead of having to clean for three hours because we invited friends over, I just run the vacuum cleaner over the rug and say, “Come on over!” A kept-up house is an easy house to keep up. Wish I’d discovered that years ago!

And the energy has come. At first we were simply exhausted every Tuesday night. But something’s shifted in the last year, and now all three of us look forward — with energy — to sharing our Tuesday nights with fellow devotees.

This last Tuesday, I got inspired by a loyal member of our meditation group: our cat, Ollie. Ollie, like all members of his species, has perfected the art of deep relaxation, and this is what he was practicing while the rest of us meditated. At some point I heard him heave a deep SIGH of contentment — the kind of sound you make when you’re slipping even more deeply into rest, when you’re surrendering perfectly.

I immediately imitated Ollie, heaving a deep SIGH and just letting go into the Light. More and more in my meditations there is a part where I simply rest in God, and Ollie providentially reminded me to do that.

It was, in a word, Divine.

Sweet rest. Sweet letting go. Sweet, sweet surrender. I am remembering to lay down my burdens and be who I truly am: a child of God. I lay my head in Divine Mother’s lap and allow her to cradle me. It nourishes me on a deep level.

I’ve been thinking about the concept of holding lately. We hold others in prayer; we hold them in our thoughts; we hold them in our hearts; we hold them in the Light.

A lot of people have held me in the last four years, since getting the autism diagnosis. Some were old friends, some were family; some were new people who showed up, I believe — professionals and new friends — just to hold us through our struggles.

It’s been so intense. Words cannot express. Sometimes life hits you so hard that you can’t stand up by yourself. I never could have made it without being held. I am eternally grateful to those who did the holding — and to God, who held me up through them.

I listened to a pastor speak recently. He told about a dreadful tragedy that befell him where he and his beloved wife got into a car accident. She was killed. He went in and out of consciousness, but finally woke up for real in the hospital. At that point he was told about his wife’s death.

The pastor said that the first thing he realized was that, as tragic as the situation was, God was in it. And that this God was the same God that had been there before the accident.

So powerful. And so true of all of it — the whole journey — mine, yours, everybody’s. God is in it. This is what I held onto when it took all my strength to get out of bed in the mornings. This is what kept me going when I felt so hopeless about Joseph. This is the concept I clung to even when I didn’t feel its truth anywhere near me.

Now, with Joseph making almost daily progress, with sleep happening for him and for me, with a beautiful, supportive group of people to meditate with, I feel grateful. And humble.

What a life. What a journey.

Thank you, God, for being in it.

I have a large, lovely, crazy, wonderful extended family. When we get together for the holidays, there is usually around 30 people. ‘Most everyone is happy to see everyone else, and there is lots of conversation, laughter, and catching up.

In any gathering like this, you can see that some people get more easily overwhelmed than others. You can find a brother-in-law sitting alone reading, or a teenager lying on the couch listening to her ipod.

But what do you do when your kid is really, really sensitive? And shy? When s/he gets overwhelmed very quickly? And doesn’t know how to fit in?

We managed to avoid most of these difficult questions this year, because we missed Thanksgiving. We were in Maui.

But when we came back, I started to miss my large, lovely, crazy, wonderful extended family. So we called my older brother, Dan, and invited ourselves to his house for an overnighter.

I prepared in advance for this visit by listening to an RDI Webinar that gave  tips for holiday visits. One of their strategies was to make sure that the child with autism had a quiet place to retreat to.

Hearing that was a real “Ah ha!” moment for me.

You see, my younger brother, Aaron, has two lively young girls. As much as we love them, when we’ve stayed there I’ve seen Joseph get very withdrawn. He gets w-a-y overwhelmed and there is no private, quiet space for him to recover. He always sleeps badly.

I haven’t known how to explain to Aaron why we can’t stay with them, but now I have the words: Joseph needs a quiet place to retreat to.

Dan and his wife, on the other hand, have kids who are grown and gone. So half of  their house feels like a peaceful sanctuary.

Another plus is that Dan has a dog. Normally the mere presence of a dog would make the whole visit unthinkable, as Joseph is terrified of them. But this is no ordinary dog: this is a chihuahua. All four pounds of her.

Because she is so tiny, Joseph is not really scared of Randi. Randi is the one and only dog in our acquaintance who has this distinction, so it is no small thing. She is a great practice dog for us.

The RDI Webinar said to find roles for Joseph as much as possible, as it’s not always easy for people with autism to know what to do — how to fit in — among other people. So I got him involved in drawing and then giving the drawings to people. When it was dinnertime, he helped with table setting and various other things.

It worked really well. And then he slept beautifully.

Yesterday there were only the five of us, and then this morning two of Joseph’s cousins (the grown-up kids) arrived. At first, Joseph kept his distance. But eventually he felt comfortable enough to join us at the kitchen table.

Later, when it came time to go out, he requested that his cousins ride in our car, one on each side of him. This was big.

When they first sat beside him, he covered his eyes (he is both autistic and shy. I don’t know which was happening there — maybe both.) But slowly the hands came down and he connected, smiling and talking with them.

So there it is. Nothing monumental, but these small steps in connecting are huge steps for Joseph.

My hope is that, as Joseph makes these connections with members of his extended family a bit at a time, it will eventually be easier to be with more of them at the same time.

*            *         *

Joseph isn’t the only one in our little family who needs a quiet place. That’s one of the main reasons I meditate. My teacher says to create a portable paradise of peace within, and I don’t know what I’d do without that peaceful place.

Since Joseph was born to parents who meditate, we will, when the time is right,  teach him to do it as well. So perhaps he’ll learn to access the peace that passes understanding within his very own self.

Wouldn’t that go a long way in being able to stay centered and unshaken in crowded gatherings? We wouldn’t have to stay only in houses with quiet places when Joseph comes from that quiet place inside.

It will be interesting to see what happens when Joseph learns to turn inward for his solace — to turn to God for the calmness, peace, and serenity he needs.

I find it absolutely invaluable to live my life (as best I can) from the inside out, where my internal world defines my external world. It gives me much more serenity than living from the outside in, where what’s happening externally determines my level of serenity– or, more often, my lack thereof.

So what will happen when Joseph learns to live from the inside out? What will happen when autism meets yoga?

Stay tuned, dear reader, stay tuned.

In our sleep, pain, which cannot forget,

falls drop by drop upon the heart,

until, in our own despair, against our will

comes wisdom through the awful grace of God.

— Aeschylus

I have a friend, Brooke, whose sister had cancer. The cancer spread steadily until it had filled her entire body. The pain was terrible to witness. For hours, sometimes, she would scream with the agony of it.

Finally one day, when Brooke couldn’t stand to watch the struggle any longer, she asked her sister, “Why don’t you just die?

Her sister looked at her and responded with a remarkable question. She asked, “How do you die?”

You see, she’d tried. She’d surrendered. She’d let go as best she could. She’d tried to leave her body. She’d prayed to be released. But she didn’t know how to die.

I can relate.

Not about the dying part, but about the truly surrendering and letting go part.

Sleep is, after all, like a little death. And, since the day we got Joseph’s diagnosis, sleep has been difficult for me.

It’s anxiety. When you have a child with ASD, anxiety gnaws at you with the consistency of a rat who has discovered a rotting corpse all to itself.

If you’ve practiced prayer and meditation or other techniques for staying centered and present, then daytime is relatively easy. But when you sleep — ah, then your defenses go down. That’s when anxiety can rear its ugly, poisonous, fang-toothed  head.

In the last week I have stopped running from it. Instead of popping a pill and leading myself through deep relaxation after the dream or the sudden awakening, I have chosen to use instead the light of awareness. I am journaling, asking, why did I wake up this time? What triggered it? What did I dream? Where did my mind go then? How am I feeling?

The findings: at least half the time, it’s a nightmare. Filled with anxiety, terror, and panic.

About Joseph.

In my last nightmare, I was so tired and zombielike that, when I passed by a couple of women and looked at them, my deadened eyes led to them having nightmares.

Wow.

My cousin, Lisa, who also has a son on the spectrum, tells me that there’s chronic anxiety and then there’s situational anxiety. But what if it’s a situation that’s chronic — like autism?

Chronic situational anxiety? asks Lisa.

Whatever its official title, I am amazed at how deep the anxiety goes, and it’s the same for every single other parent I know who has an ASD child.

I know what hasn’t helped: running from the anxiety. Popping a pill to cover it up without even trying to look at it.

Working with the light of awareness is proving to be an amazing thing. It’s like I’m stepping aside and allowing this spotlight to go where it will, to show me what it wants me to understand.

I am humbled to see that, just like every other mortal in this situation, I am so very worried, scared, and fearful.

I am also vulnerable, open, and absolutely sure that I don’t know all the answers.

It’s a mixed bag, just like the rest of life. What doesn’t kill you makes you stronger — but, in this case, strength isn’t about squaring your shoulders and pretending it doesn’t hurt. Strength is about looking into yourself with compassion and awareness. It’s about honoring your process — and it leads to empathy with the process, the journey, of every other human being on this planet.

For me, there is now a new willingness to be aware of the deepest, darkest anxieties. Where it will lead me, I don’t know.

But I am trusting the process. The light of awareness is indeed a light — and isn’t that an aspect of God, after all?

Will this new approach teach me how to let go and sleep again? For three nights in a row now I have closed my eyes to sleep and not opened them again until morning. It’s the first time in over three years that this has happened.

So I think maybe I’m on the right track.

I am also discovering that, when those formerly dark corners are flooded with light, they don’t look nearly as scary.

At first, it was just changing to a gluten-free and casein (dairy)-free diet.

And that was a lot — especially because, in one of those ironic twists of nature, we covet those things we are most allergic to. So by the time we got Joseph on the GFCF diet, his meals consisted almost entirely of cheese, crackers, yogurt and toast. It’s all he would eat — and, as his mother, I simply couldn’t refuse him and let him starve.

So the diet change was a huge shift for all of us, and perhaps I will write a blog about it sometime. But today I want to cover what happened after the shift.

You see, as the cliche says, one thing leads to another.

Even after Joseph was well into the diet, he was neither pooping nor sleeping through the night. Addressing the sleep issue, our biomedical doctor said, try an air filter in his room. We ushered in RabbitAir (another few hundred dollars into the Cure Autism kitty) to clear the allergens from his bedroom full-time.

Then I cleaned EVERYTHING in his room, looking for mold, dust, and anything else that might possibly maybe perhaps please God be causing his waking up — so that we could eradicate it and have a kid who slept through the night.

When that didn’t work, I did more research. As are most ASD moms, I became a Google Queen. Check other allergens, Google urged me. What is in his shampoo, for instance? Is there aluminum in your cookware? How about your household cleaners? Laundry soap?

Out went anything artificial, and ‘most anything with a fragrance. In came Le Creuset cookware (let’s don’t even think about how much that put into the Cure Autism kitty) and environmentally-friendly laundry soap.

I learned to make my own cleaners. One more thing, I grumbled to myself when I began. As if I don’t have enough going on in my life.

But the truth is, a little distilled vinegar or baking soda can go a long way, and they are incredibly easy and inexpensive to make. The Google Queen found many “recipes” for these things online, and is very happy with how well they clean.

The bottom line is, we were always into living naturally and greenly (new word — do you like it?). But Joseph’s sensitivities forced us to do it more deeply, more thoroughly. And I LOVE living in a chemical-free home. It feels light and clean and fresh.

So, going au naturale is just one of those unexpected gifts that we didn’t see coming on this most interesting journey.

If Joseph wasn’t sleeping through the night most of the time, we would pull up his carpet and put in wood flooring.

But I dare not try to fix what’s finally working. Sleep is one of the most precious of all human gifts, and, knowing the precariousness of it, I thank God every morning for another night of it.

It’s Joseph’s screaming that gets me more than anything else. Or maybe it’s his screaming on top of major sleep deprivation — for both of us.

I mean, I understand that regression is part of moving forward for ASD kids — and even, in less extremes, for all kids. But just now it seems that we’re spending equal time in both departments. And I’m getting bloody tired of regression.

Do you have any idea what it’s like to feel that your kid is — after years of hard, non-stop work — recovering from autism: looking you in the eye, speaking with you, sharing his inner world with you — and then to have him fade away again before your very eyes?

Actually, “fade away” doesn’t do it justice. He’s screaming. He’s barking like a dog until late in the night and early in the morning. He’s fixated on certain things, like our cat’s comings and goings. And he’s very, very anxious.

So I’m not sleeping well and I’m feeling pretty anxious myself. As a long-time yogini, I give myself a really hard time about not being able to stay even-minded through these things. And then I give myself shit about giving myself shit. I mean, why can’t I lay off myself and have a human experience sometimes? Why do I have to be Super Yogi all the time?

Maybe it’s time to get my father’s critical voice out of my head. But we’ll save that subject for another blog.

Blue Eyes wanted to leave early for work this morning. I told him he needed to stay because I was going to abuse this kid if I was left alone with him.

It’s not true in the legal sense — certainly I wouldn’t have hurt him physically. But emotionally I was ready to break down and scream right back, say some things I’ve never said and, God willing, never will say. Things like wishing sometimes that he’d never been born or how sick I am of his autism — that kind of thing.

I’ve taught yoga and meditation for 20+ years, and so have probably told people thousands of times to breathe. But sometimes it is just hard to breathe. And if you can’t breathe some of those full, deep, renewing breaths, then your mind and body are both really tense. That’s where I was this morning.

After I dropped Joseph off at preschool, I drove to a nearby trail and took a walk. I walked fast, for two reasons: I had pent-up energy to expend, and I knew it would force me to breathe.

So there I was, walking up a hill, breathing (finally), and suddenly I remembered: it’s all stories.

It’s all stories! The mind makes ’em up like crazy. Especially when we panic. And if we believe the crazy, anxious mind making up wild, horrible stories that very likely won’t come true, then we go into a downward spiral. Anxiety, crazy thinking, scary stories, anxiety, crazy thinking, scary stories.

I am discovering (again and again and again and again) that the answer to everything is this: BE PRESENT. Even more fun, be present with an open heart. Feel the Divine presence, look for it, listen to it, and know that guidance and help are here. Now.

So this blog’s title, In Search of: Serenity, is a catch-22. If you’re in search of something, it means you don’t have it. It is something you have to obtain, procure, acquire somehow.

When I am present, when I let go of the stories, then serenity is who I am. There is no need to go anywhere or to do anything to get it.

Right now I have an easier space in which to be present and open. In a few hours I will pick up Joseph and it will probably be more of a challenge (or so says my mind). Well, I’m going to practice now, while it’s easier, and we’ll see what happens when it does.

The very nature of life is impermanent. I am playing the  role I have chosen and Joseph is playing the role he has chosen.  It won’t last forever; it is only now and now and now.

Peace.