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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.

When I think of my life, sometimes I get the analogy of a boxer. There I am in the middle of the ring, swinging, dodging, doing my fancy footwork and, let’s face it, going down on occasion.

Then I’m off to the corner getting fixed up by my various support people. They stitch up my lip, wipe the blood away, massage my shoulders, and send me out for more.

In the boxing ring of life, I have both unofficial and official support people. The unofficial would be my friends and my family, but the official includes my chiropractor, my massage therapist (occasional), my naturopath, my ob-gyn, and my haircutter.

Your haircutter? I hear you ask. Yes, my haircutter. His name is Jeff, and we’ve had many self-disclosures in the years we’ve been together. He’s interesting as well because he’s somewhat spectrum-y. He swears that when he was young he was really autistic – completely lost in his own world. His abusive mother would get so annoyed at his unresponsiveness that she’d rear back and punch him, hard – so hard that he’d sometimes lose consciousness.

Now, all ethics aside, here’s the interesting part. He grew so afraid of her physical abuse that, for self-preservation, he forced himself to be more engaged with the world. To be less autistic. That, he claims, is how he was cured of autism.

I have totally digressed, but it is such a sad yet interesting story that I had to share it. Now, on to the real point of this post.

A couple of weeks ago, Joseph and I got to his school a few minutes early. It’s standard procedure for kids who get to school early to go to the blacktop, but it makes Joseph nervous, unsure of what to do with the extra time. So I walked with him and we stood there until we could pick out his classmates, who were intently engaged in a game of basketball. Joseph kissed me goodbye and ran off toward his friends.

I hid myself and watched,  interested in how Joseph would interact socially. What I saw was very difficult for me, as the mama. Joseph stood to the side of the basketball players and sort of ran in the same direction as them. If they ran toward the net, he ran that way but over on the side, and if they ran another way he did the same, but over on the side.

Forget my boxing analogy: to me this was an analogy for Joseph’s life. Always on the sidelines, unable to quite get, or fit in with, what was going on. Always the odd man out.

I left the school with that image burning in my mind. I felt so sad. So weary. So afraid for my Joseph, who will end up friendless and alone. I wiped away a few tears, blew my nose and drove over to Jeff’s salon for a hair appointment.

As always, the hair cutting and highlighting activity were pleasantly augmented with lively conversation. At some point we were talking about Joseph and his autism, and Jeff stopped what he was doing to turn and look me full on in the face.

“That,” he said, “is God’s work in you.” I told him about the basketball visual, with my poor boy running around on the sidelines. “That,” he said, “is also God’s work in you.”

He also said he has never been able to figure out basketball. He simply can’t understand it. And later, when I spoke about it to John, our RDI consultant, he said that basketball is the most fast-moving, dynamic sport there is, so no wonder Joseph can’t get it. This all made me feel much better.

But the concept of God’s work in me has stuck. I mean, it’s an old cliche that all the bad things that happen are meant to sculpt us, polish us, etc. But to think of the autism, and the pain from it, as God’s work in me has me shifting analogies (again). There is God, right there in my heart, chipping away at the hard coats of shellac. If I didn’t have my wounds, I most certainly wouldn’t have the compassion to feel another’s pain. And, without your wounds, neither would you.

While my hair was full of foils, Jeff put on a CD he wanted me to hear. It’s called The Heart of Healing and I can’t recommend it highly enough. I lay on the couch and heard Marianne Williamson say this:

Dear God,
I face that which scares me. I am frightened by that which lies ahead.
And so, I place this situation, and all related circumstances, in your hands.
Take this burden from me. As I place it in your hands, I ask that my thoughts be transformed:
From fear to confidence.
From fear to courage.
From fear to faith.

At this point, I lost it. I cried about all the fear my mind had created from watching a simple basketball scene. I cried about the concept of being afraid and then trustingly placing it all into God’s hands. I cried about being able to ask for help in such a clear, open way.

I cried about this work that is being done in me. This painful, heartbreaking, magnificent work that God is doing in me.

Eventually Jeff stitched up my lip, wiped the blood away, massaged my shoulders and sent me back out into the ring. And here I stand, swinging, dodging, doing my fancy footwork and, let’s face it, going down on occasion.

But now I do it all with a prayer in my heart. A prayer where I admit my fear and then put it, and all related circumstances, into God’s hands. A prayer where I ask for transformation. With trust. With faith. I do this if I awake in the middle of the night. I do this whenever the flames of fear lick at my inner peace.

I do it. A lot.

Rumi says, The wound is the place where the Light enters you.

God’s work in us.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Another thing left out.

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

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

Another thing left out.

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

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

Another thing left out.

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

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

Sigh. Another thing left out.

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

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

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

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

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

I was downstairs doing the dishes this morning when Joseph called to me from upstairs:

“Mom? Do you know where my gray sweatshirt is?”

“In my backpack by the front door,” I answered.

He went and looked.

As I picked up the next dish, I began to marvel at this little interchange. To an outsider it would seem so ordinary – and it is. That’s what makes it so extraordinary. Here’s why:

He called to me. For years, except for when he was screaming hysterically, Joseph spoke only in the softest of voices. You’d have to get really close to him to hear what he was saying. It was as if he didn’t have the energy – the life force – to speak with any more volume.

Mom? He only started using my name – Mom—a couple of years ago. Before that, I could be referred to in the third person (“Is Mommy going away?”), but I was never addressed directly. It was the same for everyone in his world. Can you imagine how odd it is to never hear your child call you by name?

Do you know where my gray sweatshirt is? One of the big deficits of autism is the lack of other-mindedness – not understanding that others can view things, and know things, differently than oneself. This statement shows an understanding that I can know something Joseph doesn’t.

He went and looked. He took my information, processed it, and did something with it. In the not-so-long-ago past, he wouldn’t have had such a complete thought process.

For all these reasons, I was feeling good about Joseph. He’s come so far. I was feeling happy happy happy.

Then Blue Eyes came downstairs, fear in his eyes. He asked me if Joseph had gluten yesterday and, when I admitted that he did, he told me that Joseph was really disconnected — agitated, even. Immediately I felt fearful and panicked, and I hurried to check on Joseph.

As it turns out, Joseph had a fever and a cough, which can make anyone disconnected and agitated. He spent most of the day in bed.

What got me about that little exchange with Blue Eyes was how quickly I went from my own head trip — Feelin’ Groovy — to his — Danger! Danger!

I’ve been watching head trips quite closely ever since I gave up Ambien, the oh-so-powerful sleeping pills I’d used for years. I haven’t, in the past, really believed in the devil as a personified being. A dark force, certainly, but a cunning, manipulative being that can walk and talk? Nahhhhhh.

My viewpoint, however, is changing. Sometimes, in this past non-Ambienated month, I wake up in the middle of the night unable to go back to sleep and really, truly feel I am having a conversation with Satan. Or, rather, he is having one with me.

I mean, if this Satan character is real, he would kick you in your most vulnerable spot, right? And mine, most assuredly, is Joseph. And the middle of the night is when my defenses are most down.

Just a few nights ago I awoke in the wee hours, absolutely certain that Joseph was going to be bullied, teased, ostracized, and otherwise treated cruelly by the kids in his school. I was filled with terror. A few nights before that the subject of my insomnia was incredible sorrow that Joseph doesn’t have friends, as evidenced by the fact that nobody comes over for playdates. And so on and so forth. You get my drift.

I spent the next few days after the bullying conversation absolutely freaked out. How could I protect my child from these terribly mean kids? Especially the older ones at his school, which goes from kindergarten to 8th grade.

It was a most unhappy head trip.

Then Joseph’s teacher wrote me that Joseph spent a recess blowing bubbles. The older kids chased and popped them, and Joseph laughed and laughed at their antics.

Suddenly the bullying head trip left and I got a glimmer of a new perspective. What if older kids treat Joseph with love and care because of his special needs? What if they look after him, make an effort to interact with him, because they’re good kids and because the school places so much emphasis on tolerance and mentoring. Is it possible? Could it be true?

The no-friends head trip deflated on Thursday when I went to pick Joseph up. The kid Joseph considers his best friend came over and asked, “Can I come over for a play date in two days?”

I was astonished.

Yoga teaches that levels of consciousness have thoughts associated with them. In other words, if I’m hanging out in fear, I’ll attract fearful, anxious thoughts and ideas. Therefore, to change your thoughts, Yoga teaches, change your consciousness.

I have worked on this, mostly just by increasing my awareness of it, since dropping Ambien. Whatever you call it — a head trip or a conversation with Big Red — it’s fear, which stands for False Expectations Appearing Real. Watching it closely seems to be helping. A lot. I am sleeping through the night more often, happily missing out on those fear-striking midnight conversations.

I think that, collectively, there is huge catastrophic consciousness around autism. Fear. Terror. Grief. It’s an interesting dance to process what comes up while not buying lock, stock and barrel into the things that are whispered in one’s ear when one is most vulnerable.

Peace.

yearn·ing

[yur-ning]

noun 1. deep longing, especially when accompanied by sadness

Toward the middle of Joseph’s swim lesson, the next class starts filing in. It’s a special needs class in a way that’s very different to Joseph’s special needs: it’s adults, in their mid- to late- life, who are dealing with physical disabilities. They get into the warm water pool to walk and stretch, very gently and slowly.

They come early, because it takes each of them a long time to get changed and shower. Today Judy comes first, shuffling slowly through the door. She is bent over nearly double — looking, in profile, like the hunchback of Notre Dame. Her face screws up with the pain of walking each time she takes a step.

Next is Bill. I think he had a stroke, as half his face is paralyzed. For some reason this makes him look  like he’s constantly surprised. His body moves at a snail’s pace, and I marvel at the patience of his caretaker, who walks beside him.

Last is Linda, slim and pretty. She is by far the youngest in the class, perhaps in her late 30s. Until a few weeks ago Linda would walk in slowly, leaning hard on a walker, with her caretaker behind her in case she was needed. But now Linda’s caretaker  has a new role: pushing Linda in a wheelchair. I’d hoped it was only temporary — that Linda would get back onto her feet — but it seems like it’s her new reality.

I watch Linda get wheeled through the door and down the aisle to the dressing rooms. She looks over at the kids in the pool and I see it, just for a moment, on her face: pure wistfulness, a yearning to be in that pool, beating the water with strong legs and slicing the water with rapidly-moving arms. Like those kids. Sorrow that it isn’t that way for her…that, in fact, it’s going the other direction. It’s over in a flash, and then her face is calm and composed.

I know that feeling of yearning — of deep longing, accompanied by sadness. I yearn to have what parents of a typical kid has. And there is Linda, yearning to have what my kid has.

Geez. What a messed-up world.

While I was grocery shopping today, a baby girl and I met eyes. She smiled at me, and I smiled back. Later I saw her again, down another aisle. This time she called out, “Hi!” and gave me another great smile. Naturally, I answered her and smiled back, enjoying the connection with such a precious little cutie.

Then I felt the yearning again. This girl, she was getting the feedback system that our society gives to cute, friendly kids. Neuro-typical kids. It’s full of positive feelings. This girl feels liked by strangers, comfortable in her world, knowing that she is great just the way she is.

It wasn’t that way with Joseph. He is, by and large, withdrawn from strangers — and even from many people he knows. That sweet, shy smile; that teasing, flirtatious grin — not on my kid. So what kind of a feedback system has he gotten from our society, I wonder. I don’t think he feels loved and accepted by the world at large.

Then there is my friend, Therese. Kids are laughing and making fun of her ASD son in the classroom. Here we have a negative feedback system — and from his peers, no less. When Therese discussed with her boy a conflict he had unknowingly created with another child, he turned to her and said sadly, “Help me, Mommy!” She cried for hours.

It’s hard to be the different one. Especially when you don’t have the understanding to change it.

Therese yearns for it to be better for her son, for herself. I yearn for things to get better for them, too. Just now I am strongly yearning for Joseph to make a friend — one true friend — someone who will stand by him when things get rough, which they will.

I yearn not to be in this autism club that no one wants to join. I yearn not to be living, as someone put it once, a mother’s worst nightmare.

And Linda yearns to run, to dance, to swim. Or, at the very least, to be back on her walker.

I don’t have any answers today. No glib responses. I’m just here, in this space. Yearning. For myself, for my son, for anyone on this planet who has some deep pain and yearns for it to be otherwise.

Dear God, bless us in our pain. Help us, if we can’t surrender it to you, at least to share it with you.

Yearning. Just yearning.

I woke up with a rib out of place last week. It hurt so badly that I could only put off visiting my chiropractor for one day.

Dr. Don and I talked while he worked on me. When he was done, he sat next to me and finished our conversation with, “Yoga Mother, you must remember that this earth is a pretty low plane of consciousness!”

So who lives happily ever after on a low plane of consciousness? This plane is a place to learn, to grow, to shed illusions; to do the work and the practice and to come once again to inner peace and love, connection and contentment.

This is my last post. I have been writing this blog for over a year now — or, more accurately put, this blog has been writing itself through me. It’s woken me up in the middle of the night to write itself. It’s brewed an entry slowly, for days, until the finished product spills through my fingers onto the keyboard. It’s insisted that I sit down, NOW, to say what it wants me to say.

And now it is giving me the strong sense that it’s done.

I am someone who prefers to keep my grief and challenges to myself, but this blog has demanded otherwise. In exposing my dark places to the light of your hearts, a transformation and healing has resulted. I know that you, too, have been touched and sometimes inspired by this blog, and I am grateful beyond words for that.

Thank you. It’s been an honor.

We had our kindergarten IEP (Individualized Education Plan) today. Joseph continues to have his challenges, but he also has his strengths. More importantly, perhaps, his teacher loves him already. She gets how sweet and kind and caring he is. She sees constant improvements. She wants him again next year.

Though this is not a happily ever after, it is a closure of sorts. We’ve made it this far and have a sense now of where we’re going.

This blog has allowed me to work through the grief of having big dreams die. My experiences have taught me that grief has its own rhythm. After all my kicking and screaming, I finally had to surrender to the ebbs and tides of grief, to its teachings and its power to shatter illusions.

And shatter illusions it did.

Now I feel healing happening. It is rather scary to let go of something that has become a very familiar friend, but it is, indeed, time to release the grief and move on. I can feel the Universe waiting for me to step up to the plate, to meet whatever it’s got planned for me next.

And so I say thank you. Whether you were one of my more vocal readers or a silent partner, your presence has made a difference.

I will, no doubt, begin another blog before too long. I can feel it shifting around, shuffling its feet, waiting for its turn — much like a babe in the womb. If you’d like me to notify you of its birth, you can send your email address to mrswrite@gmail.com. I promise to use your address only one time: for the birth announcement.

There is only one word I can see fit to close with: Namaste. In Sanskrit, namaste means the God in me bows to the God in you. And so it does.

Namaste.

Well, okay, maybe I’m not closing with that. With a title like the one on this entry, there is only one way to really finish this blog.

The

End.

Aum, shanti, peace, peace, peace.

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 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 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.

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.

family Are you like me in that you wonder about this immense and growing epidemic of autism? Why is it happening? I mean, besides our toxic environment and the unsafe amounts of vaccinations and gut-destroying medications that are administered to our children?

My ears perked up when someone asked Byron Katie, the spiritual teacher, about the massive increases in autism. Her take on it is that these kids are a metaphor for us: living in a fog, in their own blurry world. She said that they are reminding us to look at our own fog; they are serving as a mirror to the rest of us.

This brings us to yoga. Yoga is defined in many ways, but I think I will satisfy every devotee if I say that, simply put, it is the path of waking up. It also applies to Buddhism:  Shortly after his enlightenment, for instance, a couple of his friends asked the Buddha what had changed for him. He replied, simply, “I am awake.”

Another word for this awakened state is superconsciousness — a higher, clearer awareness, one that transcends our usual modus operandi. The opposite of living in a fog.

I’ve been pondering the connection of autism to my own personal state of consciousness – or unconsciousness, depending on the moment.

I haven’t always lived consciously. There were some painful things that happened in my childhood, and my favored way of coping was to live subconsciously. As a teenager I discovered how eating vast amounts of wheat made everything blurry (Surprise! My kid is allergic to gluten!), and I used it extensively to numb myself.

What followed, of course, were various legal and illegal substances and behaviors — all done with the mostly unacknowledged desire to not be present. I could go into detail, but chances are that you have your own version of having been there and done that.

By some grace, I started waking up in my early twenties, and my path became one of continued awakening. As the years went by I found great joy in being present, in having a calm, clear mind, in connecting to my heart and to the Sacredness in everything and everyone. I stayed away from those addictions that brought down this awareness.

Then we got Joseph’s diagnosis: autism. I remember telling a friend that, upon hearing the diagnosis, I developed an insatiable craving for chocolate. She kindly went and got me a number of chocolate kisses, which I consumed very quickly.

It was HARD to be present to such a painful thing. If you haven’t been there, you can’t possibly relate; if you have, I don’t need to tell you. I slid quickly down into a depression, which started a negative cycle between Joseph and me: I slid down, he regressed, which made me slide more, which made him regress more.

People started telling me I needed to go on antidepressants. If one person says it, fine, but it started coming from different sources: friends, neighbors, a therapist.

I pondered it and asked inwardly for guidance. The thought of not being able to feel so deeply — of having a bit of numbness to help me cope — was deliciously tempting.

Let me say right here that I strongly believe there are times when antidepressants are appropriate. For some people. it is right at this juncture: shortly post-diagnosis.

But I went to hear a local spiritual teacher speak. I chose her particularly because she has a pair of brain-damaged twins, so I figured she’d understand where I was coming from.

After she gave a talk, she invited questions. From my pain, I spoke of Joseph’s diagnosis and my well-meaning friends’ advice to go on antidepressants. I asked her opinion.

This woman does not beat around the bush. She said that, for me, antidepressants would take away the growth I could gain from this experience.

It was what I needed to hear. Once again, I chose the painful path of being present.

You know what? She was right. I find that so much of parenting Joseph is about being present with him. It is transforming to open to the amazing person he is.

When I am present I find that, underneath all of our roles, labels and superficialities, we are simply two souls, two hearts dwelling in Love.

And that is what I mean by superconsciousness. Parenting Joseph is really not about autism, nor is it about recovering from autism. It’s about both of us recovering ourselves and awakening to who and what we are: spiritual beings having a human experience.

On some soul level we chose this path – Joseph with autism and me as his mother. Where is the learning, the dance, the joy in it? How can we grow and play with it?

It is only my resistance that makes it painful. While I can’t always stop myself from resisting the autism, I can always step back and watch my thoughts. I can watch the resistance and see how it stops me from being present, from enjoying the gifts of the moment. How, to be specific, it makes me miserable.

Then I can breathe and start again. Open to the present moment. Ask for help. Let my heart do the seeing instead of my mind. Escape, but not to a lower place — to a place of higher awareness.

Another thing Byron Katie said regarding autism was: don’t wait until your child is better to love him or her unconditionally. Do that now. This seems to be what the Universe is asking us to do. Now.

Before I got pregnant, I prayed for a spiritual teacher in the flesh. I guess you could say I got what I prayed for.

The path of awakening is not for spiritual cream puffs. It is the samurai sword of slashing away what doesn’t serve one’s highest awareness. It will never look the way your mind and ego want it to.

I don’t know why autism is such an epidemic. I do know that the ego seeks the way of ease. The soul, on the other hand, seeks to grow. Every autism parent I know is having their rough places, their unconscious spots, blasted away by this experience.

I hate to say it — but on the soul level, what more could we ask for?

picnic in the parkWhen I was a teenager, I did the est training. I remember that the trainer spoke about the uselessness of hope. To demonstrate, he held up his car keys and said, “Hope that these keys don’t fall.” Then, of course, he dropped his keys to the ground. Hope doesn’t work, does it? I saw the proof with my own eyes.

Looking back, I see what a disservice that was to me at such an impressionable time. For many years after that, I didn’t allow myself to hope. When I got consciously onto a spiritual path, I realized how wonderful hope was and I allowed that spark to reside again in my heart. It’s made a huge difference in my happiness quotient.

For ASD parents, hope seems so very, very important. What else could keep us going when there are no signs of improvement in our chldren? I believe that hope is the best medicine parents can take in our situation — a direct antidote for the depression that can come along with having a child on the spectrum.

3 1/2 years ago, when Joseph was diagnosed, I had very little hope. I was bone weary and grieving in body, mind and soul. But the human spirit is resilient, and we had the grace of a team of people who held us up as parents and worked with our kid.

And now — after years of RDI, biomedical treatment, occupational therapy, blood, sweat, tears and prayers, Joseph is on his way to recovery.

I do not say that lightly. I say it with trepidation that the gods will quash me for my audaciousness.

But I also am not the only one saying it. Yesterday Joseph’s swim teacher – a tough German lady who stands no nonsense – told me that, in all her years of working with ASD kids, she’s never seen one grow so much so fast. I watched the swim lesson and I saw it, too. She asked, “Whose turn is it?” and Joseph said, “Mine! Mine!” Later she gave him a hard time for jumping in too soon and he argued with her. It was great.

And then there was today. Joseph’s preschool teacher pronounced him cured, healed. She said she can’t even talk about mainstreaming him anymore, because there is no special needs kid to mainstream.

So, you see? I am not making this up. Joseph has been on Valtrex for ten weeks today, and it has made an amazing change in his life, in our lives. But he had to be ready. It took all those years of helping to heal his gut, of strengthening his immune system — basically of laying the foundation — before Valtrex could step in and do its magic.

I know he is doing years’ worth of development in weeks, and I appreciate the raves from his teachers. But I don’t think I can let up yet: We’re not all the way there. We still have crowds and gatherings to work on, pronouns to get right, vocabulary to build up.

I also have yet to hear Joseph say, “Mom, look!” You know how some mothers feel they will die happy when their kid gets married? I feel that way about when I’ll hear, “Watch me, Mom!” for the first time.

But you know what? I think these things are coming. I hope they are coming. I pray they are coming.

Yes, I got hope. And how grateful I am for it: that thing with feathers that perches in my soul.