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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’.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

There is a wave of thinking I’ve been running up against ever since Joseph got diagnosed with autism.  Whether you call them Indigo, Crystal, or something else, the theory is that the massive numbers of children coming in with autism are not severely impaired people — they are actually advanced beings who are coming to help and heal us. They don’t need help and healing.

The quote Kelly sent me after my last post is right in line with this perspective. This quote is about autistic children and comes from the Oneness of All website:

Many of the children being born now have no lessons to learn;  they have already finished their three dimensional lessons, but chose to be on earth at this important time simply to add their Light to the planet.  That is why so many of them do not fit into “the box” so to speak, they are functioning beyond many of the adults who are their teachers. 

These children do not understand why the three-dimensional issues they see as irrelevant, are important to so many around them.  Be patient with these children, they do need structure and love, but most of all need you to understand that they see the world from a whole different perspective than those who have not yet evolved to their level.

What is autism, really? Are these souls really “functioning beyond many of the adults who are their teachers?”   Or is autism “a disorder of neural development characterized by impaired social interaction and communication, and by restricted and repetitive behavior?” (Wikipedia)

I decided to go to the sources. I contacted several spiritually-oriented friends with autistic children, sent them the Oneness of All quote and asked them what its relevance was to their experience. Here are the answers I got:

Therese: My son is absolutely not an advanced being. I don’t believe that quote for a moment.

Mike: I think maybe autism is the first incarnation after being an animal. That’s why my kid, and others, have so much trouble functioning.

Lisa: That is a very insightful quote, and I absolutely believe it is true. Funny, because my son has said the same thing to me in different words.

Pardon the pun, but there seems to be a whole spectrum of perspectives!

I sent the quote to one other parent. Melinda gave an insightful, moving response that may well sum it up for all of us:

It’s a perspective. There are endless ways of perceiving reality.

It’s like we all exist in a huge round tower with windows at every point in the 360 degrees. When you stand in one place, your view out that window is real. Walk a few steps over and your view, equally real, will be somewhat different. Walk halfway ’round the tower and your view of reality will be quite different still.

Add to that the fact that we’re all seeing the view from our own eyes and perceiving it through our own brainy filters, and…well, you’ve got a million versions of truth, yes?

I’ve stood before windows that show me my daughter is a gifted teacher here in part to help me and others grow strong roots and then branch wildly towards the light, throwing off seeds. I’ve stood before windows that show me that she is an incredibly vulnerable being in a cruel world that can’t accommodate her.

I’ve seen smoke in the distance and interpreted it as a wildfire coming to engulf her. And then from another view it was smoke signals, reminding me that all dissipates, all is illusion.

My experience is constantly shifting. My experience is often the result of which window I am standing before….and more and more it is the result of which window I choose to stand before.

I speak my truth in this moment. Tomorrow morning, when my daughter gets up with her hands bearing crusted dried blood from putting them into her pants during her period, when she needs to touch my nose thirty or fifty times and stands before the calendar searching for gaps or errors in my listing of the events of her life, I might be looking out a different window.

I might even choose to close the blinds! Thankful that I can choose at all.

*               *               *

Thank you, Melinda.

Maybe, as beauty is in the eye of the beholder, so too is autism.

May our eyes see clearly. May we stand mindfully in front the window, aware that the view is very much a choice we make.

p.s. If you want to have your mind blown about what autism is, check out this video.

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.

The path to God takes many forms. St. Francis courted Lady Poverty, early monks went for suffering (self-flogging and other such pleasantries), many aspirants fast, and yogis retire to their caves for years of silence and seclusion.

Well, I’ve got one that, as far as I know, hasn’t yet made the list. But it should, it really should. It’s the Path to God through Embarrassment.

Wait — don’t touch that mouse until I explain.

You see the photo here? This is Joseph, as happy as can be, sitting at Starbucks and just starting into his caramel apple cider.

Earlier I’d picked him up from school and explained that I needed to stop at the grocery store. Sometimes this brings a storm of protest, as the sensitive boy has had enough of people and needs to lie low. But this time he readily agreed, and off we went.

I marveled at his ready agreement, and then I marveled still more when he started singing to a new CD I’d bought. He never sings along to music, so this indicated a surge in development. Yippee! I thought. Life is good. Then, instead of wanting to go home, he asked to go to Starbucks afterward! Life is great, I thought.

We interrupt this narrative to state that people with autism often have a very difficult time when they make a mistake. I have no idea why. Joseph has gotten better about his goof-ups through the years, but we still deal with it.

Back to Starbucks. This happy photo was taken mere seconds before the top fell off of Joseph’s cup, spilling a full glass of warm, gooey caramel apple cider all over my purse and all over the floor.

Joseph started to yell. Extremely upset, he continued to yell. As he took in the full extent of what had occurred, the volume increased to full-blast yelling.

And then it happened:

Everyone Looked.

Hanging around Joseph, it is not such a rare occurrence to have Everyone Look. It happens maybe once every two or three weeks. You’d think I’d get used to it.

But here’s the thing. A few decades ago, I longed to be good friends with a woman I knew. She, however, scorned my initial attempts at friendship. It was only much later, when we’d managed to actually become good friends, that she confessed her reasons for putting me off: she thought I was too together.  I always looked composed, I dressed nicely, I was fit, and — this was the example she used — I could bring a batch of homemade cookies to a party and not eat even a single one.

(What she didn’t know was that, harboring an eating disorder in secret, I’d already helped myself to the entire batch of cookies that didn’t make it to the party. Beware of people who seem all together.)

This, ladies and gentlemen, this is what Joseph brings to me: a general announcement that neither he, nor I, is all together. And, since we live in a small town, you can’t go anywhere without running into someone you know. At Starbucks today, we saw Andi and her father from swim class, as well as that nice man who takes his kid to the same school as Joseph and who always says hello to me.

They were part of the Everyone who Looked. Add three more people to the list of those I know who are now absolutely certain that I am not all together.

Isn’t this great? Can you see how God lies at the end of the Path to Embarrassment? Who needs to fast or pray or self-flagellate or go into silence when she has Everyone Looking at her?

This morning, in my meditation, I had just finished my preparatory techniques and was letting go into stillness when I noticed that an insect had bitten my thumb. I got that itchy, stinging sensation and I noticed the irony. What do I do now, I wondered, put my attention where it wants to go, on my painful thumb, or try to draw my energy back into the stillness?  Ultimately I had to settle for a little of each.

And so it is. God lies in the embarrassment, God lies in the developmental surges, and God most especially lies in the ego having no pride left to hide behind.

Life is good. Life is definitely good.

I knew it the moment I saw him this morning. Something about the angle of his head, the placement of his eyes. The way he went directly into the living room and started humming, humming, lost in his own world.

Regression.

Blue Eyes and I had been hoping to go as a family to the monthly potluck that our friends have — to celebrate each other and this beautiful spring day. When we mentioned it to Joseph he cried, saying he didn’t want to go, he couldn’t go, he was scared of the dog, he wanted to stay home.

We couldn’t go. It would have been ridiculous to drag him, in this state, to a home filled with people on the inside and dogs on the outside.

I don’t know quite how to describe the panic and moroseness that we, as Joseph’s parents, go into when he regresses.

First off, we try to solve it. We think, what brought this on? Is it because we let him have a tiny bit of salad dressing with dairy in it yesterday? (Could the tiniest bit of dairy really do this?) Did he sleep really badly? Is it all the pollens floating around? Or, we ask hopefully, is he simply on the brink of a developmental surge?

Next we try to bring him back into our world. We get him to do chores with us, to run and play with us; we try many ways to engage him. Nothing works.

He’s so very autistic-looking. His gait, his posture, his eye contact — everything is off. It feels so hopeless.

Late this afternoon we went to our local co-op. While I was getting some potatoes, Joseph started pushing the shopping cart along. He didn’t notice that he was getting in people’s way, banging their carts with ours, squeezing one poor woman against the wall.

I was calling to him in that stressed-out, pissed-off voice of the parent, trying to get his attention, when these arms went around me and hugged me.

I turned around to see an old friend, a fellow yogi. He looked at me with all this light in his eyes and I suddenly felt the dark cloud that was around me. The light coming through him magnified for me what a dark place I was in.

Ugh.

Sometimes we think that there is no limit to Joseph’s future. We envisage him being a professional musician, having a wife and children and friends and lots and lots of happiness.

But this evening it was different. Blue Eyes and I discussed putting Joseph into a home when he turns 18. Maybe some kind of halfway house for disabled adults — something where he could bag groceries during the day and have a place to live at night. We grieved all the time and energy we are putting into him — the difficulty of our lives — when it is going nowhere.

And that, folks, is how we respond to regression. It is hard. So very, very hard.

I’ve never asked this before in my blog but, if you’re inclined to pray, would you be so kind as to pray for Joseph and Blue Eyes and me? We could use a little extra help right now.

Thanks.

I am on a liver cleanse. I’ve done this same cleanse every year or two for the last decade, but it seems I always forget the hard part until I’m in it again.

A long time ago, I was in the habit of using food in a very destructive manner. Then I enrolled in Overeaters Anonymous, went to therapy, faced many demons, worked the 12 steps hard and, with a lot of help, made my way out.

So why is this cleanse so difficult? Because I still use food to go unconscious, but in small ways — it doesn’t run my life the way it used to. Getting very conscious about my food — and, therefore, about my child with autism and my life itself — is challenging. And my body hurts. I feel like one big, toxic mass.

But you know what? I’m going to stick it out. This is a four-week cleanse and I am on day four — which, though difficult, is nevertheless easier than day three was.

The part of me that wants to grow, that wants to be conscious, is delighted. I get to work on self-control. I get to give it to God instead of diving for the object that alleviates my awareness. I get to witness the grasping mind wanting so badly to grasp.

Do you remember that movie, Airplane? As things go from bad to worse, the pilot keeps saying things like, “Guess this was a bad day to give up alcohol,” as he downs a drink. Later it’s, “Guess this was a bad day to give up heroin,” as he shoots up.

That’s what my mind wants to do. Guess it’s a bad day to give up unhealthy food.

Ha! Not a chance, mind. This thing is bigger than both of us.

What I’d like to do in my life is focus not so much on my problems. I want to focus instead on God and the amazing grace of his/her presence in my life. Instead of the problem of autism, I want to focus on the power and profundity of parenting a child with autism…of how it’s changing me.

I gave a talk to a mothers’ group last week. I spoke with them about authenticity. I shared my challenges about raising a son with autism and I invited them to speak authentically.

It was beautiful. Lots of tears, plenty of laughter. For days afterward, in my own little life, I felt the cords of connection between me and these women I’d never met before — but who met me on such a deep level.

I was only able to be so real with them because of where this journey with Joseph has brought me. It has brought complete havoc on the person I was. It has cracked the cracks and removed the mask and brought me to my knees — which, I might add, is not a bad place to be.

Not bad at all.

So I think I’ll just stay here on my knees. Knowing God’s depth-less love for me, for Joseph, for every single one of us. Knowing that there is a plan — a soul agreement — around this journey, even if I can’t see it. Trusting that God will guide me to the next step I am to take — and that this is all I need in this moment. Meeting God where I am, toxic mass and all.

Courage. To one and to all.

The judges of normality are present everywhere. We are in the society of the teacher-judge, the doctor-judge, the educator-judge, the social worker-judge; it is on them that the universal reign of the normative is based; and each individual, wherever he may find himself, subjects to it his body, his gestures, his behavior, his aptitudes, his achievements. — Michel Foucault

My earliest memory is of standing a few feet from my mother. She is crouched down, arms held out toward me, urging, “Come on! Come on!” Around me are some other people — brothers, sisters — friends, perhaps, but they are mostly a blur.

My mother’s eyes are so very clear to me. There is LOVE — incredible, unconditional, indescribable love — pouring from her eyes into my being. And since I am so young I am very sensitive, and I can also feel that force of love coming from, and through, my mother. It enfolds me, it holds me, it lifts me up.

Paramhansa Yogananda says that God’s unconditional, incomprehensible love is most closely represented by a mother’s love for her baby. In this memory, I am completely filled with that divine love.

In it, I know I can do anything. I take my first few baby steps, finishing my first walk in the arms of my mother. I hear the applause around me, I feel my mother’s excitement, and I know that I am so very, very loved.

What happens to that sense of being unconditionally loved? I believe I was connected to it all through my elementary school years. It was only when I started (shudder) junior high that the all-enfolding sense of being loved evaporated.

I remember the exact instant it happened. First off, my childhood soul mate — my best friend of all best friends — moved away just before I started sixth grade, so I was already feeling bewildered, like I’d lost half of myself. Then, on the third day of sixth grade, I got onto the school bus. One of the popular girls looked at me and said, derision dripping from her voice, “Do you always wear stretch pants?”

The truth was, I did always wear stretch pants. I liked the little straps that fit under my feet and the freedom of movement that stretch pants allowed. But when I looked around, I noticed that nobody — not one single other person — was wearing stretch pants.

A light bulb lit up in my mind. People care about what you wear! It said. They don’t think you’re worthwhile or loveable unless you look right!

I remember feeling disbelief, but then realizing I’d better get on the stick or I would be the target of all sorts of bullies.

Trouble was, it took me three years to really get the look together. So for those three years in junior high, I was spit upon, slingshotted, called horrible names, and more.

But toward the end of those three torturous years, I started to crack the code. I intentionally studied what made people acceptable in this strange new world where you had to conform in order to be loved. And I decided to play the game.

Off went the blue cat-eye glasses and on went contact lenses. Off went the K Mart clothing and on came stuff from the mall. The hair got styled fashionably. And when I started high school, with almost all new people, I  made my way quite high up the popularity ladder.

Still, I never lost the sense that it was some ridiculous game and I’d simply learned to play it. I looked with pity upon those students who, for whatever reason, couldn’t or wouldn’t figure it out and play along. I could never be mean to them the way the others were.

Now, as the parent of a kid on the spectrum, I wonder: Do kids with autism ever crack the code? Do they, can they, learn to play the game — or are they always the target of bullies, of impatient teachers, of people in general who don’t understand? Dr. Temple Grandin talks about those torturous school years. My ASD nephew went through it. So did my cousin’s ASD boy. Twelve years of school — no friends, merciless bullying, and always the outcast.

You may have read the recent story about the boy with aspergers who, after being yelled at yet again by his teacher, got onto the New York subway and lived there — one train after another — for ten days. He took the battery out of his cell phone because he didn’t want any phone calls. When he was finally “caught” he was asked why he’d done it.

His answer: He just wanted to be somewhere where nobody yelled at him.

When I think about Joseph going to a mainstream school, I see myself falling into the “act normally” trap. I demand, over and over, that he  stay seated during meals (he loves to pop up every few minutes to sing and dance, or spell out a word on the frig, or whatever catches his fancy). I insist that he not make strange movements in public. I try to make him brave about going down slides and things like that.

But when I think about homeschooling him, or having him in some other personalized learning program where teachers appreciate the differences in children, then I find myself relaxing and loving what makes Joseph so special.

Take music, for instance. Even Joseph is astute enough to know not to compose in public — but when he is at home, symphonies swell up in his very being, making him move and sway and hum and sing.

When I express interest, he’ll share parts of what he hears with me: “Here come the violins ( he makes some violin music). Now I hear flutes (hums a beautiful, high-pitched melody) — oh, here’s the trumpet” — and on and on.

What did Mozart or Beethoven act like when they were five, I wonder. Did their peers (and maybe even their parents) think they were a little crazy? Would public school — or any school — have crushed the music of their souls?

I guess the question I have about the music that pours through Joseph is: is this autism or is this an amazing gift from God? Or does it have to be one or the other? Maybe the answer is, simply, yes to all of the above.

The other question is, is there a place — other than home — where someone could see, and draw out, the gifts that God has blessed him with? Where his spirit won’t be crushed because he isn’t “normal?” Where he could fit in, autism and all, and not be seen as lesser than the others?

And if there isn’t, does the problem lie with kids like Joseph, or with the rest of us?

That’s it. I’m ending this entry with questions, not answers. Because I have faith that when we’re asking the right questions, we’re getting very close to finding the right answers.

It finally happened.

I was cooking dinner while Joseph was sitting at the kitchen table,  drawing a picture. He was excitedly narrating what he was drawing as he went along. I said to him, “I’ll know you want me to have a look when you say, ‘Mom, look at this.'”

Lo and behold, a few minutes later he said it. For the first time, ever!! “Mom, look at this!”

Then he drew something else and said it again. And so it’s continued for the last few days.

This evening he came into my room and said, “Mom, look at this train I drew!” He waited for me to look at him, and then the picture. Then he continued. “This one is the steam engine and this one is a passenger train. There is the track, and there are the rectangular windows.”

I remember declaring in an earlier post that, if Joseph ever said anything like, “Mom, look!” I would die happy. So when I die, please know that I have, indeed, died happily. 🙂

He’s also gone beyond just calling for my attention with  one little “Mom!” (which, in itself, was a huge milestone). Now it’s “Mom! Mom! Mom! Mom!” Or, for that matter, “Dad! Dad! Dad!Dad! Dad!”

So something is changing. Some new neural pathways are forming, new synapses are firing. Something, somewhere is developing.

It’s exciting. It’s great. It’s — wow — very, very encouraging.

But.

(See? We can always find a but.)

Joseph still has autism.

And I think that maybe, perhaps, possibly even probably, he always will.

He may always have some funny, jerky movements. He may always have a more challenging time with interpersonal relationships. He may always have a not-so-good sense of what’s appropriate and what’s not in social situations.

But I also think that maybe, perhaps, possibly even probably, he’s going to make it in this world.

Joseph just seems to draw people who are good, kind and loving. Whether it’s teachers (this means you, M.P.), sitters,  or friends — both big and small — people love his good, kind, simple and innocent heart. He’s a  bit like Forrest Gump in that way — but more mentally switched on, thank God.

I’ve been listening to a talk that Dr. Temple Grandin gave at the MIND Institute (http://www.youtube.com/watch?v=2wt1IY3ffoU). She is able to talk about her autism in a way that allows us ‘others’ to understand it better. She talks about a book she co-authored with another autistic person. He was more switched-on socially, so that was a bit difficult for them, but they both were obsessed with school buses, so that was cool.

I love the way she is able to laugh at herself. Autism has given her a different perspective than the “normal” person, and she has used this to carve out a unique and rewarding life. She offers hope — and ideas — for ways that people with autism can work, and live, and function in this world.

Maybe it’s not about making Joseph “normal.” Maybe it’s about helping him to do what we are all learning to do: manage our weaknesses and foster our strengths.

Maybe diversity isn’t so bad. I went to elementary school with an albino boy. He had white hair, always sat in the front row, wore very thick glasses and used a typewriter. He was also bright and funny, and, while we were fascinated with how he was different, we also loved him for who he was. We “got” him, in today’s vernacular.

So I think I’m going to stop acting apologetic about Joseph’s funny movements and lack of social graces. We will continue to help him grow in all ways, but we will also open more to the gifts of what we have.

When Joseph says, “Mom, look at this!” I want to remember that it’s not just “this” he is asking me to look at. He is also asking me to look at him — to see the beauty of his being, to be a part of his world. He wants me — and all the rest of us — to “get” him.

Sharing his world. I think that maybe, perhaps, possibly even probably, it doesn’t get any better than that.

I grew up in a determinedly non-religious, Jewish family. I believe that I always felt God’s whispers in my heart, but I didn’t know what to do with them. In my college years, as I experimented with various drugs, my longing began to emerge more fully.

How I wanted a spiritual teacher. I remember one night, looking up into the stars, beseeching the heavens for that person who would teach me about spiritual matters, who would help me to know God.

That was the first time I ever got an answer from the Universe. It was: wait.

I was both terribly depressed and absolutely thrilled that Someone, Something had responded to my call. And I waited. And I watched.

When I finally found that my path was an inner one of meditation and a more universal view of God, I dove in headfirst. Things were rosy and exciting. Many times I felt God’s quiet, inner presence guiding me or loving me. And I loved her back.

Then I got an email from my best childhood friend. Her brother, Daniel Pearl, was the reporter from the Wall Street Journal who was kidnapped in Afghanistan. The Pearls had taught me all I knew about the Jewish religion and our families had been very close for a while. I had watched while the Pearl children went to Hebrew school. I celebrated Passover and Sabbath with them. They are exceptional, talented people who live their lives with integrity.

After Danny was brutally murdered, I had to process through all the grief and horror just like everyone else who’d known him and loved him. And one of the discoveries I made was that I had a belief that ran like this:

If I do everything right, God will leave me alone.

Leave me alone in the respect that He won’t do anything horrible to me, in that tragedy won’t touch my life too terribly. But when I saw what happened to the Pearls, knowing that they “did everything right,” I realized that the game was much bigger than I thought.

So, I asked myself, why do I even try to connect with God if she won’t take care of me, won’t  play nice with me?

Ultimately I came to the fact that I am a part of God. I cannot separate from him no matter how he treats me, and I will always want to connect more deeply for the same reason a wave always melts back into the sea.  We are one.

But this God figure is tough. She is not only awesome; she is awful. It is the awful grace of God that one runs into in one’s life,  once or twice or more often – depending on what kind of lifetime you’re having.

The Goddess Kali, from the Hindu tradition, personifies this tough aspect of God. Ma Kali is a black-skinned Goddess who wears a garland made of 52 skulls and a skirt made of dismembered arms. In two of Her hands, She holds a sword and a freshly severed head that is dripping blood. She can appear to be wrathful and terrifying.

I knew an Indian man who was an ardent follower of God as Kali. He prayed to her constantly, worshipped her daily, constantly asked her to appear to him. For around 25 years he never stopped asking to see her in form. He longed, he wept, he pleaded to see her for himself.

Well, one day as he was praying he looked up, and there she was. Do you know what he did when the object of all that longing was finally there, right in front of him?

He screamed in terror and ran.

The Goddess Kali can do this to people.

Since autism entered my life, I have felt Kali as a constant companion. Her ferociousness has blown me away. Her willingness to sever my ego is enough to make me scream with pain.

And yet. Kali is said to be a most compassionate mother because she provides moksha, or liberation, to her children. She is the destroyer of unreality. When the ego sees Kali it trembles with fear because the ego sees in her its own eventual demise.

Underneath all the scary parts of Kali is the loving Mother, who is sweet, affectionate, and overflowing with incomprehensible love for Her children.

At this point in the autism journey, I can see both these sides of Kali. I am amazed at how surgically precise she is at removing my illusions, and how willing she is to do so — without anesthesia, I might add — for my own good.

But I am not so scared of her anymore. A few years wrassling with one’s opponent can build up, perhaps not friendship, but most certainly respect. Mostly now I feel her when, for example, the pangs of wanting a neurotypical kid get strong – when I feel I missed out on most of the fun of raising a child. I hear her laugh when I indulge in self-pity.

And I have come to trust her. God, in the form of Kali, is tough. The epitome of tough Love, if you will. But fire, while searing, is also purifying. Sometimes now, in that roaring fire, I will feel her love. I will know that the Mother is with me, tenderly looking out for my highest spiritual potential.

So, I have learned, it’s most certainly not about doing everything right in order to avoid the Big Lessons from the Big Guy. What a relief to give up on that one.

It’s about learning to surrender into that which is hammering at you, learning to see with clarity beyond the illusions in front of you — and, most importantly, to really, really know that it’s all being done out of Love. We came from Love, we will go back to Love, and Love is here and now, always, always.

In my journey, it’s required tough love to bring on an experience of true love. Such is the dance of spirituality and autism.

It’s been a quiet week in Lake Wobegone. Joseph (and, therefore, Joseph’s family) has been dealing with anxiety issues once again.

Sirens are very hard for Joseph. He can take other really loud noises but there’s something about the combination of  loud sirens combined with the thought of ambulances, fire trucks and other vehicles rushing to an emergency that just freaks him out.

A friend and her boy came over the other day. We took a walk over to a bus stop that was a little further away, in order to give the boys some exercise. Then we caught the bus into town, which is something that the boys love to do.

But on the walk over, we heard siren after siren after siren. Just when we thought it was done, another would start up. Poor Joseph. The only way he can cope is to stop whatever he’s doing and cover his eyes until it’s over. Not his ears, mind you (we couldn’t actually see the rescue vehicles), but his eyes.

So, as the sirens wailed nearby, my friend turns to me and says, “It’s almost like it’s on purpose!”

It feels that way sometimes. Like God is up there saying, “Let’s turn the heat up for little Joseph and see if he can take it.”

Covering his eyes when he’d actually be a lot better off covering his ears. It makes me think about everything we do in order to feel safe.

Just a few days ago, I heard President Obama say that the primary job of the government is for the protection and safety of its people; that’s why we’re at war. I think about all the insurance we buy in order to feel secure; the “safe” places we put our money; the fact that we create a nest egg at all. We wear armor, physically (for snowboarding, skate boarding, etc.) and psychically (keeping people at an emotional arm’s distance). We buy nice houses in good neighborhoods — sometimes behind locked gates. We take our Xanax and our homeopathy. We say our mantras and our prayers.

I once met a woman who’d lost 100 pounds. She said that the hardest thing about it was that now people stood closer to her. She didn’t have that physical fortress around her, keeping them away.

Safety. Amazing what we’ll do for it.

My little boy doesn’t feel safe at times. More than most. Toward the end of his school day he frets, sometimes panics, about whether or not his mom will really come to get him. Dogs are a constant terror. Crowded new places are no bed of roses, either.

It’s the limbic system, where the rational part is not calming down the primitive part of the brain. How do you battle something like this?

Two things work a little. One is called approach and study. So there’s a dog up ahead. I take Joseph’s hand, we stop and I say, “Oh look, there’s a big dog over there. Do you think he looks friendly (I am trying to teach him dog body language)?”

If Joseph doesn’t immediately panic about the dog’s presence, we can talk about the wagging tail and the ears up and the dog’s general demeanor. Theoretically, we can then edge up a bit closer and study some more, but we haven’t gotten to that point yet.

However. We do have friends with a mid-sized dog, and we have graduated from the dog being banned outside when we visit to the dog being held on our friend’s lap to Joseph actually touching his tail on our visits.

And that’s the second thing that helps a little: repetition. Over and over we visit this dog, Miles. Over and over we talk about how sweet Miles is, and again and again we bring Joseph over to get to know him.

That’s our little anxiety/safety issue, but I’ve been thinking about safety on a larger scale, too, and I’ve come to one undeniable conclusion:

NO ONE IS SAFE.

Our community is being rocked right now because a sweet 8 year-old girl was in a car accident last week. Her skull is fractured, she’s in a coma, and she’s got titanium rods in her legs. Will she survive? If she does, will she be brain damaged? Nobody knows.

This is a family that, two weeks ago, I would have envied a bit. Loving parents who got to raise a nice, neurotypical girl.

But sometimes everything we do to be safe just evaporates. Our very foundation is whipped away, and we have nowhere to stand. It’s terrifying.

Unless and until we realize that we are in the hands of God, and that is that. We can do all this stuff to feel safe, but the truth is it’s not our business: it’s God’s.

And this leads me to another undeniable conclusion:

EVERYONE IS COMPLETELY AND ABSOLUTELY SAFE.

Why? Because God is holding us all in His loving arms.

What is the biggest fear? Death. We tell Joseph that death is going home to God and, deep in my being, I know that this is true. Going home to the Source of unconditional love, light, and peace. How unsafe is that? And we don’t have to wait ’til we die to access this Source. It’s available here, now, always.

Here’s the part we don’t get: though life on this planet feels very unsafe, there is an invisible, intangible cable connected to us.

God’s got our backs.

I wonder sometimes how differently I would live if I really, truly got that, in every fiber of my being. That I was safe. That God, in Her depthless love, was always with me, protecting me, caring for me. Would I be lighter, feel freer, see the humor in what is now only viewed with fear?

How about Joseph — how differently would he live if he could get that he is truly safe, on every level?

I suppose it is a question we could all ask ourselves. And then, when we feel that safety, we could focus more on the invisible cable that connects us to God than on the jump (or, let’s face it — the push) off whatever cliff’s edge we’re currently teetering on.

Joseph had surgery this past Tuesday. In a delicate area. Ok, ok, I’ll tell you: he had a medically necessary circumcision.

I was, naturally, nervous about this. But my nervousness increased a lot when a friend reminded me that there was a lot of debate about general anesthesia and the toxicity it caused in children with autism. In particular, the use of nitrous oxide has been heavily debated in autism forums and websites, and there is concern that it can make an abnormality with folate (something many autistic people have) even worse.

So Blue Eyes and I hit the books — er, internet — to do some research on anesthesia. We discovered a lot of information, including an article by an anesthesiologist nurse with an autistic child (http://www.autismone.org/content/anesthesia-autistic-child-sym-c-rankin-rn-crna) that spoke particularly about which anesthesia was better for kids with very sensitive systems. It said to make sure your anesthesiologist understands that autism is not  simply a behavioral thing but a physiological condition, and that it needs to be treated as such.

We liked the article so much that we printed it out for Joseph’s anesthesiologist to refer to. We wrote down the types of anesthesia that we felt comfortable using.

But on the morning of the surgery, when we actually got to meet the anesthesiologist, he was arrogant. He told us that the article was anecdotal, that he knew what he was doing, that we could either do it the hard way (our way) or the easy way (his way).

Sigh. I know all doctors aren’t like this, but why are most of them like this? I was on the verge of demanding another anesthesiologist, but I held my tongue. Instead we stood up to him, as we have learned to do in the past few years, insisting that we work together on the drugs that would be given, and not given, to Joseph.

After all, isn’t “anecdotal” the way everything got decided before we developed an obsession with facts? And how do you get facts if no one is doing the research?

Blue Eyes and I had to be willing to go into the discomfort of disagreeing with an “expert.” We had to go on the edge of rudeness, insisting that our needs be taken into account. It took some discussion, but eventually the doctor agreed not to give Joseph nitrous oxide, and we all agreed on what Joseph would get.

This experience was very different from my emergency c-section. When that happened, we gave all our power away to the doctors. Whatever they thought was best was what happened. To this day, I still think it was all those antibiotics that caused Joseph’s already-compromised immune system to tip over the edge into autism.

Do you know which is the very best yoga posture? Standing on your own two feet. This is one of the things having a kid with special needs has taught me to do. Joseph got through the surgery beautifully and is recovering without any visible signs of trauma (other than the, well, obvious one).

We all play roles on this planet. The anesthesiologist got to play arrogant doctor, and I got to play insistent, determined parent. But I can’t help but think that, if insistence can decrease arrogance in the medical profession, then we need some more insistent parents. We need to arm ourselves with information, stand in our truth, and yet be open-minded to the doctors’ input. It’s an interesting balance.

Perhaps, if standing on your own two feet is the very best yoga posture, it’s those balancing postures that come next.

Joseph is doing some quantum leaps at the moment. The way we can most see it is in his drawing. You see, his coloring has been mostly squiggles and blobs and blurs, which he has interpreted as trains or thunder or some other objects.

But the other day, in preschool, his amazing teacher taught him how to draw faces. She got a mirror out so that he could look at his own face, and she had him look at hers as well. They figured out together that there are two eyes toward the top, a nose in the middle, and a mouth underneath.

And now Joseph draws face after face, with bodies, legs and feet, too! It’s an exciting step in development. One of my friends, who hadn’t seen him in perhaps a month, couldn’t believe the changes when she saw him yesterday. So hurray! for progress.

We were driving home from the store the other day when Joseph said, “There’s another silver Matrix!” Sure enough, right in front of us was the exact same make, model and color car that we drive.

I started waxing philosophically to Blue Eyes. Maybe that’s me in a parallel universe, I said. Maybe that me has a neurotypical kid. I wonder how she is different from this me?

So, Yoga Mother with the neurotypical child, how are we different? Have you had to learn patience as well as I have, repeating the simplest thing endlessly in the hopes that your child will one day grasp it? Have you tasted the humility of your child being different, being disabled, of your child (and, therefore, you) not fitting in when you’ve desperately wanted him (and you) to? What is it like to not have been imprisoned in walls of isolation — walls we are only now really breaking out of?

Most importantly, other Yoga Mother, I want to know what your spiritual life is like.  Have you experienced drowning in your own delusion — in stress, anxiety, hopelessness — the way I have?  Have you ultimately come to the knowing that God gives it all to us — that S/He weighs it out, measures it, makes sure it’s just right, and then sends it along — even if we never really understand why?

I think, other Yoga Mother, that the spiritual difference is probably the greatest difference between us. It’s not that you aren’t spiritual; it is the most important part of your life. But you haven’t been tested the way I have, and so you haven’t been forced to dig more deeply than you ever thought possible. You haven’t been broken open the way I have, so you haven’t experienced the same magnitude of comfort, grace, and simply the presence of Almighty Spirit with you every infinitesimal step of the way.

Would I trade with you, Yoga Mother of a neurotypical child? Yes. No. In a minute. Never.

Guess I’m not ready to answer that question. 😉

I have a friend who has recently turned 60. She says that, when you look back from that vantage point, everything that’s happened makes sense. She’s had some whopping challenges in her life — so, coming from her, this was no light observance.

And that is where I end today’s post: with trust. Trust that this journey is my journey. I wasn’t meant to be in that other silver Matrix. This road may have some incredible bumps, but it’s my road, my journey. So I bless you, other Yoga Mother, and let you go your way while I, with trust, an open heart, and the grace of feeling God all around me, go mine.

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.

We’ve been back from Maui for two days now. We came home, packed away our shorts and tank tops, and put on our long underwear. Yesterday evening we watched the first snowfall of the winter turn our yard white. It was pretty.

But just for these few moments, I ask to you join me once again in lovely, warm Maui, where the breezes blow such soft sweetness into your mind that you are unable to hold even the slightest of grumpy thoughts for more than a moment.

My last post had Joseph and me hanging out together at an expensive resort. After our healing time in the hotel room, we sauntered back out to the pool. This time it was a little easier for both of us. I stopped wishing that Joseph would just relax and enjoy himself like the other kids, for God’s sake, and he stopped — what? Feeling my resistance and reacting to it? Being as scared because he’d already gone to the pools once?

But it still wasn’t easy. In particular, there was a water slide in the pool — an easy, gentle one — that had Joseph scared to death. He’d watch smaller kids shoot down it — he’d stand there, watching, for long periods of time — but he couldn’t go down himself. I forced it once by pulling him on my lap and taking him down with me, but he screamed bloody murder and I got those looks from the other parents: Stupid mother! Abusive, uncaring woman! And I gave it up.

Eventually we got into the hot tub and Joseph got a little more courageous, swimming by himself small distances and just having fun. It wasn’t long before Blue Eyes joined us. Then evening fell and we watched a magical Hawaiian ceremony that Joseph still talks about.

But here’s the thing: when we left the resort, he was still scared of the pool, scared of the little slide in the pool  — just…scared.

One of the ways autism can present is in this kind of fear. There’s some evidence showing that the primitive part of their brains is not as well connected to the rational part, so all that primal fear comes up unabated. I’d say that, in Joseph’s case, this is probably true.

This fear presented strongly around the ocean, too. Joseph was very afraid of going in past his ankles But one day I just forced it…gently. I scooped him up and carried him into the water, holding him tight and trying to make it fun. He actually enjoyed it for a bit.

Blue Eyes saw it happen and took up the theme, giving Joseph a piggy-back ride right into the ocean. When Joseph protested I showed up behind him, wrapping my arms around him and pronouncing him a Joseph sandwich. Somehow this made him feel safe, and he actually enjoyed being in the ocean for quite some time.

Then, RDI style, we very consciously spotlighted what had happened, showing Joseph how far out he’d been in the water and how well he’d done. We even took a photo so that we could remind him with a visual once we got home.

In subsequent visits to the beach, we progressed to Joseph doing some assisted swimming from me to Blue Eyes and back. And when he was on his own, he’d venture in waist-deep. Everyone felt more competent.

Being more confident in the ocean must have felt so good to Joseph. Before that I would watch him watching the other kids in the water, quite a few younger than him, and I know that somewhere, perhaps not even verbalized into thought, he was wondering what was wrong with him that he couldn’t get into the ocean like that.

A few days before we were to come back home, Joseph started talking about the resort pool again. He said he wanted to go back; he wanted to go down the slide; he wanted to put his head under the water this time.

It looked like we didn’t have time to do this, and then a little Divine Choreography occurred: the people we were house sitting for called. They were delayed; could we stay an extra day? Thank you, yes. So, on our last full day in Maui, we drove the long drive to Lahaina and snuck into the resort’s pools.

Normally Blue Eyes and I have a lot of integrity. Normally we would not use a hotel’s facilities without paying for them. But our son’s special needs make us bold sometimes. He seemed to need closure on his fears, and we were curious to see what would happen. We wanted to help him. So in we snuck.

Joseph got onto a boogie board and swam around the entire lagoon twice. Then he went to his nemesis: the slide. He sent his boat down. He outright refused to go down on my lap. He sat at the top of the slide and, making sure that Dad was at the bottom should anything go awry, he slowly let go.

Many times. He conquered that damn slide. Then he put his head under the water. Then he swam on his own a fair distance.

When we left those pools (having constantly dodged the lady with the clipboard who was throwing non-guests out), we had by our side a competent, satisfied child.

Today was Joseph’s first day back at preschool. His teacher couldn’t believe it: Joseph used to have a paralyzing fear about going sledding down the long hill at the school. But this time he sat in the front and rode the whole way, twice, having the time of his life.

The moral? Never give up on your kid. Things may take longer than they do for typical kids — heck, they may not even happen in this lifetime — but when you run out of patience, remember that you can draw on the boundless patience of our Divine Mother/Father.

Most importantly, no matter what the obstacles may be, do everything you can to help your kid feel competent. That way, the (shudder) free-fall of incompetency and fear can be replaced by riding high on an upward spiral of competence and confidence.

I have an ongoing love affair with the Hawaiian islands. They have captivated my heart ever since my first visit at 18. I’ve been to Hawaii as a tourist, a backpacker, a honeymooner and a mother-to-be, but never before as a mother of a special-needs child.

The last time we went to Hawaii my belly was 6 months swollen. We knew it would be our last real vacation for who knows how long, so we milked it for everything we could: lots of snorkeling, going to the movies and out to dinner, lying on the beach, and reading books uninterruptedly. Since then, I have pined for the islands — the fresh winds, the warm ocean, the lush jungles, the whales and turtles and tropical fish, the relaxed atmosphere.

So when some friends offered to let us housesit at their place in upcountry Maui, we jumped at the chance. We are even missing Thanksgiving, and, trust me, my extended family is not pleased with us. But having an autistic kid is a huge challenge financially, and the opportunity to do Maui on the cheap (bonus miles air tickets, even!) was too irresistible to pass up.

I consciously tried not to lean on old memories of Hawaiian vacations. I reminded myself that Joseph has trouble adjusting to new people and new places, and that this would not be easy on him. I knew I would see other kids his age doing things with enthusiasm and joy, whereas he would be timid and withdrawn.

But, try as I did to steel myself, I wasn’t prepared for being in Hawaii with autism.

Parts of it have been okay – good, even. Joseph has surprised us in his willingness, happiness even, to hike long distances along rather difficult trails. He has some sensory defensiveness going through overgrown places – God forbid a fern should brush against him – but, overall, he copes pretty well.

Staying in one place has been a real blessing. After the first couple of days, Joseph was quite comfortable in the house. It’s quiet and peaceful here, and that has made a real difference to him.

The beach has been hard. For some reason, Joseph has always had trouble with the beach. He just doesn’t know what to do at it. He’s somewhat frightened of the ocean, so swimming is out. Unless we set him up in a role – “Joseph! Let’s build a sand castle!” – he resorts to doing his strange autistic dance with sudden, sharp movements, and singing the Pirates of Caribbean song over and over again. People look strangely at him. It’s embarrassing.

Blue Eyes signed up to finish his scuba diving certification here, which meant that, for two days, Joseph and I were on our own. I had the bright idea of us going to Lahaina with Blue Eyes for his 2nd day of diving, and staying at a resort. This way, Joseph and I could play in the resort’s pools during the day, and Blue Eyes could join us when his training was over.

So we splurged and went to one of the more fancy spots for a night. A beautiful, lagoon-like pool snakes around, inviting you to swim, relax and enjoy yourself.

But Joseph didn’t receive the invitation.

We went first to the kids’ pool. Other children, some much younger than him, went running in, jumping in, shouting and laughing with enthusiasm and joy. They splashed, they swam; they called, “Mom! Watch me!”

Joseph and I spent the morning with me trying to get him comfortable enough to enjoy the wading pool. He resisted. I resisted him resisting. He felt incompetent. So did I. A good time was had by everyone but us.

We finally retreated to our hotel room, where Joseph said he wanted to spend the rest of the day. It was 1pm.

I railed inside. Here we were in Maui, having spent a lot of money to be at this fancy resort, and he wanted to just stay in a hotel room? And play with his trains?

Ok, I reasoned to myself, let’s give him an hour. He needs some time to chill. I turned on the TV and watched Seinfeld while Joseph played. Seinfeld was funny; I laughed – I needed that – and started to let go of my judgments of Joseph and my resistances to being on vacation with autism.

It wasn’t how I wanted it to be. But, I asked myself, was I going to base my happiness on whether or not life was behaving the way I wanted it to? Or could I choose to be happy, content, with what was being given — and not given — right now?

As I got more grounded and centered in my heart, I was able to turn off the TV and be present with Joseph. I was able to love him for who he is. We sat on the patio together while he ate a snack.

I looked at him, feeling the love in my heart. He looked back; we communed deeply with our eyes. Then, suddenly, he chanted a long “Aaauuuuummmmm” and, still chanting, placed his palm on my ajna charka at the spiritual eye. He held it there for about 30 seconds before taking his hand away and smiling at me.

He’d never done that before, and I don’t know where he got the idea to do it. But it lifted me to a new place, where I realized anew that this is a great soul acting out a role. And that this is a role he has taken on as much for me, for my growth and learning, as for his own.

I’ve always loved the Sanskrit phrase smritti, meaning divine remembrance. That little act of Joseph’s has reminded me to look beyond the surface of this life – to see that the embarrassment, the resistances, the heart’s contractions – the messiness of life in general when you have an autistic child – are all leading to a place of openness, strength and ego-unraveling. A place where the channel of love can flow more freely and more fully.

So, yes, on the surface we are simply – and frustratingly — on vacation with autism. But just as diving beneath the surface of a warm Hawaiian ocean allows one to become aware of a whole different world, full of wonder and harmony, we also have the invitation to experience our vacation in a vastly different way.

This is one invitation I don’t want to pass up.

Later that afternoon, we made it back to the pools. More on that in my next post.

Aum, shanti, and aloha.

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.