You are currently browsing the tag archive for the ‘insomnia’ tag.

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

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

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

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

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

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

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

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

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

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

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

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

Hello, little goat. Welcome home.

Advertisements

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’.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

And to write blog posts.

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

This is a picture of, from left, Carl, DJ and Joseph. That’s Lana’s hand on Carl. With hubby/dad Fred, they moved into our guest house for 12 days in June, left for a while, and have now moved back there for a couple of months while they house-shop.

Joseph and the boys have become fast friends. DJ is the oldest: a mature, sensitive five year-old, he and Joseph play together the most.

They were playing together the other day, jumping on the trampoline, talking, laughing, in general having a great time. A short while later, when I checked again, Joseph was sitting all alone on the trampoline, enveloped in a cloud of sadness. He looked lost and confused.

“What’s going on?” I asked casually.

“I don’t know,” Joseph replied. “DJ is mad at me and I didn’t even do anything!”

As we continued to talk, it turned out that the “anything” Joseph didn’t do involved throwing a nerf football hard into DJ’s stomach, making DJ cry and run for home.

“If it was me, I would apologize,” I say, using my Love and Logic consultant approach.

“No, I won’t do that, but I’ll go check on him,’ Joseph said, running off for the guest house. Before long, the kids were playing again.

Scenarios like this repeat themselves over and over again with the boys. Joseph needs so much practice on the social level. It is deeply embarrassing to me that he doesn’t understand seemingly basic things — that he needs a real person to ‘throw things at’ before the feedback is strong enough for him to get it.

Yesterday he roared at DJ, “I don’t want to be your friend anymore!” This was a comment he’d picked up from a fellow friend on the spectrum and he obviously felt the need to try it out himself. Poor DJ sobbed and sobbed.

If the roles were reversed, i would feel protective of my boys and try to shield them from this kid who ‘should’ know better. But Lana is pretty amazing. She is a special ed teacher, so she comes equipped with an understanding most people don’t have.  She speaks frankly about the problems but she always seems willing to let her kids have another go with Joseph. I keep waiting for her (or the boys) to say, “We’re done! Never again!” but so far it hasn’t happened. What a godsend this family is!

And Joseph keeps learning. After yesterday’s incident we had a long discussion and then he, on his own initiative, wrote himself a reminder list. This is what it says:

Behave nice
Give Carl space
Give DJ space
Be nice, play nice
No hitting, no smoking

(I don’t know where he got the no smoking part from…?)

He posted it on the outside door so that he can look at it when he plays.

There is a bit of a bully in him. I think he likes to create a strong reaction in the little kids — both likes it and feels sorry afterward.

I feel lost to help him. Relationships are dynamic things, shape-shifting around all the time, — so the truth is that, in most ways, Joseph  has to work it out himself. I can help him reflect afterward, but most of it is on him.

Maybe that’s what makes it so hard. I can’t seem to prep him enough to make it a success; he’s got to learn out in the ditches. It makes me cringe.

But the Divine choreography of bringing in this family with great kids and a mom who gets, and really appreciates, special needs, gives me hope. Maybe I can’t help Joseph that much, but the real One in charge is really in charge, and I need to give it back to Him/Her. I’m not so good at giving back my burdens, which is probably why I’m here, unable to sleep, at 3am.

So, once again, I take a deep breath. I leave the land of worries, where my grown child resides alone with no friends, and land back in the present, where I can trust that much is happening beyond my little perspective. That a loving God has it all in His/Her hands, and that my job is to leave it there.

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

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

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

Then I woke up, shaking.

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

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

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

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

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

“Also,” he added, “you need help.”

Ya think?

“Get therapy,” he told me.

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

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

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

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

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

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

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

I got the info on the therapist.

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

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

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

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

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

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

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

And Then There Was Public School.

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

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

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

Until recently.

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

Sleep has been a real bear lately. Even the drugs that I’ve resorted to haven’t done the trick. So I’m doing the thing I’ve resisted, avoided, neglected, and otherwise tried hard not to do:

I’m looking at my subconscious.

Earlier this week, I pulled a daily affirmation card that said this:

Today, I will identify a situation that binds me to the past and offer it at the feet of the Divine.

Immediately I thought of how Joseph didn’t sleep his first four years, and neither did I, and how incredibly traumatic that was for me. I still have a hard time being close to Joseph at night. It’s hard to sleep in the RV together on camping trips, for instance. And I struggle with intense insomnia almost every night. I have soooo not gotten over this trauma.

I spent that day giving it up to God, over and over again. And that night I had a dream:

A woman got thrown into the back of a garbage truck. At first she thought it was funny, but she soon realized that she was stuck in the garbage and that, no matter how she yelled or banged on the sides, no one could hear her. She realized she was going to die, smothered in all that horrible garbage, unheard and unseen. At one point there was a window and I could see her looking out. Her face was filled with despair and terror, tears running down her cheeks. It was terrible.

The night after that I dreamed that I lived in this horribly hostile world and there was a man stalking me, wanting to rape me. Last night I was at a store and, when I went out, found that wildfire was consuming everything around me. Smoke was everywhere; I couldn’t see and I couldn’t breathe.

Get the feeling I have some work to do?

A dear friend suggested I write for a minimum of 15 minutes before going to bed. I could write anything or everything, but I had to let my subconscious speak. I did this for the first time last night, and I could feel that terrified subconscious sigh a little exhale. I think I’m on the right track.

From a soul perspective, I realize how profoundly Joseph’s autism isn’t just for his growth and expansion; it’s also very much for mine. On Friday mornings some parents gather at Joseph’s school to have coffee and tea. This morning, a few of us got into a discussion about improving the quality of the school lunches. I am waaaay into this, and I said so. They asked me if I could come to a PTA meeting, where we could discuss it with the Principal.

For two years I have wanted to go to the PTA meetings, but they take place right after school and I haven’t known what to do with Joseph. Your typical child could come along and play with other kids quietly in the back, but Joseph is not your typical child. He would need my constant attention — he would be nervous and possibly freaked out. In other words, it wouldn’t work.

These three women are looking at me, waiting for an answer. Perhaps due to this subconscious work, I chose to expose my soft underbelly — my big, shameful secret. I said, “Do you guys know Joseph has autism? It just wouldn’t work to bring him along.”

They all nodded — yes, they knew. I felt the energy change around us — growing, expanding, as our hearts opened more fully to each other. Jenny offered to have her mother, who is experienced with special needs, stay with Joseph so I could attend. And thus my attendance problem was solved.

As I walked toward my car, I could feel my heart happily melting. It was not my big, terrible secret, after all. It was the elephant in the room. The whole darn school must know. If I saw a kid walking toward school flapping his hands, I would know. What the hell have I been thinking these past couple of years? More swimming in that river DeNile, I guess.

Oh, the joy of speaking one’s secrets. Oh, the beauty of making oneself vulnerable. The moment I did, they reached out to help. I am learning so very much.

I am watching and listening more closely now to my dreams and my subconscious. My hope, and my prayer, is that things start to turn around for this woman in the garbage truck, the hostile world, the raging fire. May she start to feel more safe. May she be heard when she asks for help. May she realize that support is right there, just waiting — chomping at the bit, even — to be invited in.

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

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

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

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

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

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

Joseph being goofy

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

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

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

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

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

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

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

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.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

In our sleep, pain, which cannot forget,

falls drop by drop upon the heart,

until, in our own despair, against our will

comes wisdom through the awful grace of God.

— Aeschylus

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

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

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

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

I can relate.

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

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

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

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

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

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

About Joseph.

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

Wow.

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

Chronic situational anxiety? asks Lisa.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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