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

It finally happened. Blue Eyes and i have seen a clue or two and we wondered if it was coming – but yesterday it definitively happened.

Dallas let Joseph know that he is DONE being his best friend, DONE being his friend at all.

Joseph has autism. He doesn’t gain the understanding of how to be a friend by osmosis. And as social mores change in puberty, he has not adapted. Sometimes he seems like an 8 year old hanging around preteens.

To make matters worse, obsession, which often seems to link arms with autism, formed in Joseph’s feelings toward Dallas. He thought about him, wrote about him, spoke about him, dreamed about him, sang silly songs about him (the latter in front of Dallas’ peers). He joined sports teams that Dallas joined. He shadowed Dallas everywhere he went. I experienced the shadow thing during the cruise and it nearly drove me crazy. Poor Dallas didn’t get a break.

Being the good guy that he is, Dallas put up with it way longer than he probably should have. Now it’s boiled and spewing out of the volcano, and it is OVER.

But he couldn’t tell Joseph. I had to be the one to do that. Gulp. When we teach Love and Logic we often show Dr. Brene’ Brown’s short video clip on empathy, and I leaned on that when I told him.

It broke my heart, truly it did. I had to tell him, as gently as I could, that Dallas wanted nothing to do with him any longer. Ouch ouch ouch. Joseph was understandably sad. We talked about the shadowing, the silly songs, the way Dallas felt embarrassed in front of his friends. And Joseph felt that Dallas was 100% right. He immediately wrote Dallas a letter apologizing and saying that, from now on, he would give him lots and lots of space.

As painful as it all is, it’s also what we’d call an affordable lesson. This is a great time in Joseph’s young life to learn what being a friend involves. As a kid with autism – which most definitely includes a huge social deficit – friendship-forging will take actual studying, strong observation, and perhaps (finally) listening to his parents’ input (one can hope, anyway!).

In A Course of Love, we are told that there are truly only two ways to go: Fear or love. My mother’s heart keeps jumping from one to the other, but as I was reflecting tonight I remembered the concept of putting trust into the gap. This is the idea that, when there is a gap between what we expected to happen and what actually happened, we always get to choose what we put into that gap: Blame, suspicion, trust, etc. Take your pick.

Suddenly removing Joseph’s best friend creates a gap in what we were expecting, and I am choosing to intentionally put trust in there. If, in deepest love and benevolence, life is giving each of us exactly what we need, then all I can do is trust that this situation falls into that category. Whatever difficult and/or lonely times lie ahead for Joseph (and, therefore, his mother!), I want to stay in trust and gratitude. Oh, I might jump over to fear too, but ultimately I choose love.

Yesterday we had the painful conversation. This morning Joseph sang me a song he’d made up, a rendition of Shiny from the movie Moana. Whereas the actual lyrics go, “I’d rather be shiny,” Joseph’s sang of Dallas’ leaving and the chorus was, “I’d rather be happy,” declaring his determination to be happy regardless of losing this friendship.

Fortuitously, Joseph and Blue Eyes had an overnight camping trip planned for tonight. Blue Eyes texted that Joseph is already thinking of ways he can be friends with other kids. So, God bless him, my kid is showing resilience and understanding in a time of trial. What a kid!

I am reminded of the woman in Australia who, when the earth started violently shaking, threw herself down upon it and embraced Mother Earth in her movement. And so I end this post with an intention to embrace the change, trust the gap, and, above all, to be thankful. Because those things, my friends, have me choosing love — the only true reality — over the great illusion of fear.

 

Advertisements

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Your children are not your children.

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

They come through you but not from you,

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

You may give them your love but not your thoughts.

For they have their own thoughts.

You may house their bodies but not their souls,

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

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

For life goes not backward nor tarries with yesterday.

You are the bows from which your children as living arrows are sent forth.

The archer sees the mark upon the path of the infinite,
and He bends you with His might that His arrows may go swift and far.

Let your bending in the archer’s hand be for gladness;

For even as He loves the arrow that flies,
so He loves also the bow that is stable.

Blessings to all.

Professor Temple Grandin, perhaps the best-known person with autism next to Rain Man (who, I remind you, was a made-up character), once commented that we need to keep the lives of our autistic kids interesting. I have pondered this many times over the years, agreeing with her that presenting new and exciting adventures to Joseph keeps him interested, engaged and challenged.

But when your kid has anxiety — which is extremely common for people with autism — it has to be looked at slightly differently. bell-curveOur RDI consultant once drew us a bell curve like the one to the right. The line in the center separated the two sides. To the left he wrote “Productive” and to the right he wrote “Unproductive.” There is a point, he explained, where challenge simply becomes unproductive. While you don’t want to make Joseph’s life too cushy (too far left), you also don’t want to immerse him in events that produce unproductive anxiety (right).

But anxiety is unpredictable and often irrational, so you don’t quite know what is going to push someone over the edge. Like last week, for example…

We went camping. Fun, right? Blue Eyes and I both come from camping families and we have wonderful memories of the adventures we had on those trips. Joseph was excited: we camp every year for a few days so he knew, more or less, what to expect. Blue Eyes had even fixed up our relic of an RV, and we took that along (I happily spent the nights in a tent next to them.)

anxietyThe first morning, anxiety struck. Why? Who knows. Dogs were leash-only, so that was okay. Maybe being out of the routine? Somewhere new? We were in Lassen National Park: Volcano territory. Like a volcano, Joseph’s anxiety built up and exploded out – hot, fierce and uncontrollable.

What we forgot since we last went camping is that campgrounds provide a great view into other people’s lives. There is nowhere to hide a kid who is loudly expressing his fear, resistance and anguish. Think humiliation.

On the other hand, other people couldn’t hide either. We watched happy families with excited kids who were loving — and making the most of — every minute of their camping experience. Living so openly, side by side with typical families, really got to me for a while there. I felt terribly sad.

By the third day of some difficult times, Blue Eyes had a brilliant insight: Part of Joseph’s anxiety had to do with the structure of the day. If we’d done a morning hike and returned to the campsite for lunch without any particular plans for the afternoon, this was perceived by Joseph as a high-stress situation. Whereas Blue Eyes and I looked forward to a few empty hours, our kid did not. He’s not like this at home, but we had to roll with what was happening there. It worked to say, “Let’s take half an hour to rest and then go for a bike ride.” It didn’t work to say, “Let’s do whatever we want for the afternoon.” This helped. A lot.

Looking back, I don’t think I handled the anxiety well. I was irritated. I hated that others could see and hear our troubles. Why couldn’t Joseph just reason himself out of this? Why was he behaving in such a ridiculous way?

But the beauty of reflection is the learning that comes from it. I don’t fully understand Joseph’s pain and I doubt I ever will. But rather than judge him (to take another view of the bell curve: unproductive behavior), I want to feel compassion for him and support him (productive behavior). We are going to get to work on this anxiety, starting with an Ayurvedic specialist who focuses on kids with anxiety.

During one of the low points of the camping trip, Blue Eyes pointed at our sweet dog and said, “That’s our gift.” Then he gestured toward Joseph (who was out of earshot) and said, “That’s our work.”

Paramhansa Yogananda, in a letter to one of his devotees (though I think in actuality all of his devotees), said,

Everybody’s difficulty is different and he or she has to win that test of karma…I will never give up my job about you….Not only will I ever forgive you, but ever lift you up no matter how many times you fall.

This, I believe is the work of us parents, especially those of us with special needs kids or rebellious kids or troubled kids. Our kids come in with their own karma and their own tests. We can’t change that, but we can let them know that we won’t give up on them. We will ever forgive them, ever work with them, ever help them to be all they can be.

Dang, it’s hard. But here I lean on Yogananda again, with these excerpts:

I shall ever be with you and through Divine Mother guard you from all harm, and will constantly whisper to you guidance through your loving self.

So do not become discouraged and tired…

A smooth life is not a victorious life — and I will give you lots of my good karma, so you will get through.

…not only will I invisibly help you but visibly, through many here.

IMG_1977Opening to receive that good karma. Exhaling a big exhale and allowing my own anger, resistance and anxiety to dissolve as I remember, yet again, that this work is much greater than just Blue Eyes and me. The Universe offers unlimited support, if only I allow it in.
Blessings.

Yesterday was Father’s Day, and Blue Eyes chose a hike in the Sierra Buttes to celebrate. It had been a long time since we’d been to the Buttes, and we were all quite excited at the prospect. So far so good, right?

We got an early start, drove a ways, parked at the trailhead and started to hike. Then it happened. The dog thing came up…again. The crazy, totally unfounded and irrational terror of dogs reared its ugly head. What did this mean? Well, almost every other party hiking yesterday had a dog with them. The first family that went by had not one but two of the fearsome creatures. Joseph ran off the trail and into the woods as they went by. But in his fear and panic, he also started insulting the dogs (loudly): “Those dogs are mean! They’re nasty!” And here comes the winner: “They should be killed!”

CheckersRepeat variations of this many times over. At one point, Joseph was out in the woods again, and Blue Eyes and I were waiting for him on either side of the trail. Our dog, apparently NOT one of the fearsome creatures, was hanging around happily.

I looked at Blue Eyes and said in a trembling voice, “The pain body! The pain body!”

The author, Eckhart Tolle, started the pain body concept. He says that all our past and present pain accumulates to create a negative energy field that occupies our body and mind. He seems to treat it as an invisible entity in its own right: which, if you think about it, it really is. How many of us do things we wouldn’t normally do when we are in a lot of emotional pain? I know that I almost always regret what I do when my pain body is up.

Tolle’s recommendation is to watch the pain body closely, as there is a lot to learn from it. Also, when you are watching it you are not sucked into it. You are being the witness — that oh-so-powerful way of living life.

So I watched it. And Blue Eyes and I had a good talk about it: His pain body was not up. He was surprised and a bit frustrated, but not angry and sad the way I was. He didn’t want to push Joseph off the cliff at the top (note: I am speaking figuratively here. While the pain body part of me certainly did want to push Joseph off the cliff, the rest of me remembered that I (a) love him, (b) feel sick when I kill even an ant, and (c) don’t want to spend a good portion of my life — even a Joseph-free life — in prison).

Then I added in something new I’ve learned from the Buddhist teacher, Sylvia Boorstein. “Sweetheart,” I said to myself, “you are in pain. Relax. Take a breath. Let’s pay attention to what’s happening. Then we’ll figure out what to do.” I am paraphrasing, but this is roughly what Boorstein says about these lines: “Sweetheart” reminds us to be compassionate to ourselves. “You are in pain” is stepping outside and being the witness. “Relax” suggests to the mind that there is another approach to this situation. “Take a breath” offers a new focus. The rest suggests more witnessing — looking within first and acting second.

It helped. A lot.

After a couple of hours on a steep, dog-filled trail,  something happened: a man we had gotten friendly with stopped ahead of us to talk with someone. His sweet dog, Sammie, wandered down to say  hi. Joseph went into reverse fast, while Blue Eyes and I loved-up Sammie. “Joseph!” we called. “Come pet Sammie. We’ll hold him for you.” Joseph made his way slowly toward us, then gave Sammie some pets from the back. He got more brave as he went, and soon it became apparent that Sammie had also landed in the “not a fearsome creature” category.

We climbed some outrageous stairs to reach the observation tower at the top of the mountain, 8900 feet up. What accomplishments! A long, hard hike, at least one new dog on the friendly list, and a pain body observed.

The way down was much more cheerful. Less dogs, and even the ones we encountered didn’t cause so much drama. Blue Eyes andSierra Buttes I congratulated each other: We hadn’t seem any other special-needs kid on the trail, and we could understand why. With a kid like Joseph, it’s much easier to stay home and do something he wants to do, like screen time or whatever. A large portion of this hike was a pain in the behind. But I remember John, our RDI consultant, telling us we needed to teach Joseph board games so that it wasn’t another thing left out. And so it was with the hike yesterday. Another thing not left out. It was hard. It took determination and embarrassment and tenacity. But we did it.

Afterward, I asked Joseph how the day was for him. “Good!” he said. He was proud of himself. When he looks back on this day, the episodic memory will be one of accomplishment and pride. Us too.

So there we have it. Another thing not left out. Thank God.

 

 

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.

Do you ever just step back and admire the mind, with all its stories and games and tricks? All its envying and resistances and fears, all its ‘what-ifs’ and ‘why me’s’ and ‘oh no’s’?

I know I do. I mean, it never stops its play. Oh, maybe here and there, at a life highlight or an amazing meditation, but mostly the mind just goes on and on and on. And when you have a big thing like a child with autism, the mind gets tons of grist for its mill.

I have consciously tried not to blame my son for his autism. In something reminiscent of the Christian policy of loving the sinner but hating the sin, I have loved Joseph but I have hated autism. I have despised autism, cried over autism, obsessed about autism, resisted the fact of autism, worried relentlessly about autism, and cursed God because of autism.

It’s different now. This is because I recently heard a spiritual teacher, Gangaji, speak about the enemy. I am paraphrasing her here:

She says that the mind, in its restlessness, seeks out entertainment. Obviously there are many ways in which the mind is entertained, but she got specific, singling out how profoundly the mind is entertained by war.

This war, I assume, is not just nation against nation, but conflict within one’s own little world, or even with oneself. And in order to have a war, Gangaji says, the mind must first conjure up an enemy.

Since hearing this, I have been watching my mind conjure up enemies. They are everywhere! If I am running late, the red light is an enemy. If my husband snores when I have insomnia, he is the enemy. If one of my closest friends gets depressed and doesn’t contact me for a while, she is the enemy. Basically, anyone or anything who does what I don’t want them to do becomes an enemy.

Ooooh, enter autism. Autism is the club nobody wants to join. Raise your hand if you agree. Ok, don’t — I can’t see it anyway.

Here’s the thing: Gangaji goes on to say that when we’re truly ready for peace, we stop conjuring up enemies. There simply IS no enemy anymore.

It’s really quite simple. We are either resisting, or we’re not. ~ John Astin

Don’t hold me to it ‘cuz I may change my mind (literally), but right now I am choosing peace around autism. Autism is not the enemy. Even God — the one I blame when all else fails — is not the enemy. Autism just is, and I am not going into war over it. I will do all I can to help Joseph realize his full potential, but that, too, can be done peacefully, without fear or worry or even urgency.

When that resistance stops — and when I stop being in a war even with the war — then there is peace. Gangaji defines peace as the absence of entertainment.

It’s a nice place. I watch the attachment to this nice place come up and I smile: There is the mind again. Now it wants to make being anywhere but in this nice place an enemy.

Wishing you presence, awareness, and the ability to witness — rather than believe — the mind in its playing.

Please click LIKE if you like this post. Thank you!

Have you noticed that it’s easy to trust when everything’s going well? That’s when you feel there is a loving God. That’s when you know the Universe is on your side, and you are in the “zone.” Then — LOOK OUT! — a wrench gets thrown in the works. And suddenly God is not so loving, the Universe is out to get you, and that zone is some far-off place that has no relation to you.

Welcome to my week.

Blue Eyes and I have been quietly celebrating a thinning fog in Joseph’s brain. No one other than his mother(!) has ever called him smart before, but in the space of a few days one of his teachers told me he was intelligent, and another said he was obviously smart. This is, I believe, a direct result of that thinning fog. Joseph is thinking more clearly, speaking more lucidly, and understanding more quickly. So yeah, that loving God was showering his favor on us.

Then came not one, but two, wrenches.

First was our beloved RDI Consultant. He has a disability that he has courageously battled since he was a child. He called the day before our consultation to tell us the disability was looming large in his life and that he needed to go for some major surgery. Said that this may be the end of his role as a Consultant.

If you haven’t had someone come in and make a huge difference in your autistic child’s development, you may not get the impact this had on me. First I cried. Then I prayed — hard — for trust.

Oy. Trust. My whole life I’ve had a hard time trusting God. Trusting that there is some grand plan in execution beyond my limited vision. So I cried and I prayed and I cried and I prayed.

A few days later, I heard Joseph in his room at 4am, crying. When I asked him what was wrong, he said his left leg was killing him. Blue Eyes woke too, and together we massaged his leg, gave him pain killers, applied heat, and tried whatever else we could think of to help ease the pain.

Joseph was in agony. He couldn’t get off of his bunk bed, so Blue Eyes had to carry him down, Joseph screaming with pain. We had a trip to the doctor’s, a trip to the hospital for x-rays, and a later trip to the hospital for an ultrasound that evening. In between visits Joseph (and I) cried about this mysterious, vindictive pain.

I had to drive directly from the evening visit to the hospital to meet someone for a work consultation. My head was NOT in the right space to meet with this man, and I didn’t do my best work. So I’m driving home, completely exhausted, and — guess what? — praying, once again, for trust.

That’s when God spoke to me. This, s/he said, is how one builds trust. Facing frightening challenges and actively trusting again and again. Day by day, or moment by moment.

Then the radio started playing  a song:

Strength will rise as I wait upon the Lord. Wait upon the Lord, I will wait upon the Lord.

Whatever caused Joseph’s pain, it has cleared up now. The tests found nothing. The doctor is guessing a twisted muscle.

Whatever else it was, it was also a  great gift for me. In the hospital waiting room that morning, I felt an overwhelming urge to let all my girlfriends know what we were facing. So I texted them. They responded with moral support, practical help, and many prayers. I thought back to seven years ago, when we got the autism diagnosis and I told almost no one. I was not ready to ask for, and receive, that much help. I was not ready to be so vulnerable.

love GodKahlil Gibran says that, even as love is for our growth, so it is for our pruning. The journey of autism has pruned me — cutting off everything that was not essential so that newness could grow and flourish. Now I can say, help me! I can lean on others when I am not strong.

And a loving God, a Universe that is on my side, and a zone that is readily accessed with an open heart are all reminding me that I can relax. All is happening as it’s meant to happen. I don’t know what that is, but for my part, I can trust.

More and more, I can trust.

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.

The body is a great teacher. Mine has been a rather constant, somewhat troublesome body, with something painful happening in it almost all of the time.

Lately it’s been my right arm. Pins and needles through the arm. Massive pain through my wrist and fingers. Writing’s been hard. Sleep’s been harder.

I think that we have much more impact, and influence, on our health than we tend to believe. One night recently, Blue Eyes and I were talking about my arm dilemma and the thoughts/beliefs that might be behind it. He looked at me and said, “You carry a lot of fear.”

In characteristic old-married-person response, I rolled my eyes and told him how far I’d come in getting over that fear. But before I went to sleep that night, I put the question out to the Universe: What is this pain about?

Asking is soooo good to do. On the way to school the next morning, Joseph and I were listening to a recently-purchased CD by Staci Frenes, and we heard these words:

Your grip’s too tight.

That’s it! I realized. My grip is way too tight!

I think back to Joseph’s diagnosis seven years ago. My body and mind curled into a tight fist when the word autism was spoken. I held on through that oh-so-difficult journey, sometimes hanging over a cliff, barely able to grip the edge.

But grip I did.

sword fightRemember the old-fashioned sword-fighters? One steps up to the other, sword drawn, and says, “En garde!” I think I’ve been “en garde” for seven years: Body poised and tight, adrenalin flowing, at war with the medical industry, the school system, the naysayers, funding sources, the co-occuring conditions. At war with autism and its devastating effects. At war with my own stress level and insomnia. Even at war with the war.

Without much awareness around it, I have been wound tight, feeding off a hot suffocating tension, watching and waiting (even in my sleep) for the next battle.

And now? Joseph is nine, about to finish second grade in his typical classroom.  He is navigating his life in his own unique, amazing way. Yes, he still has autism. Yes, he still faces trials and tribulations because of it.

But.

It’s time to relax the fist.

It just is. It simply is.

I am going to open my aching fingers, spread my arms, open my heart…

…and free fall.

free fallEver wonder what it feels like
to free fall?

Nothin’ underneath you
To catch your fall
to look up at a big sky
and feel so small
Ever wonder what it’d be like, feel like, to live life
out of your control?
~Staci Frenes

Free falling is the image I am taking through my life now. It’s only been an illusion of control, after all. How much more fun it is to no longer pretend I have any. To be like a hawk gliding along, surfing circles on air currents, simply present and letting go into the experience. Not a thought about what comes next until it’s there.

Sometimes I’ll thank someone who is working with Joseph and they will respond by saying, “It’s a great privilege.”  To be honest, I have never understood this. But this morning I felt a little charge up my spine: How amazing that I get to help this special-needs kid go through life! Whereas many other parents are stuck with normal, think-inside-the-box kinds of kids, I get this really unique, creative, most unusual child to hang out with.

And I felt it. I felt how great a privilege it is to be Joseph’s mom.

* * *

My arm is getting better.

Interestingly, the soreness has made my right hand unable to grip into a tight fist.

That’s improving now. Soon I’ll be able to grip tightly.

But I won’t.

I am reading a great book , a true story called Dying to be Me. To make a lovely long story extremely short, this woman had a near-death experience (NDE). One of her insights there was this:

I understood that I owed it to myself, to everyone I met, and to life itself to always be an expression of my own unique essence…Being inauthentic also deprives the universe of who I came here to be and what I came here to express.

She writes about the ultimate perfection of everything. She was given a choice: If she chose to die, for instance, her husband would soon follow her, and that would be perfect! On the other hand, if she chose to go back, she and her husband would work together on their passion, and that too would be perfect!

I look at Joseph and I wonder about the perfection of his autism…and the perfection of being his mother. This week has not felt like perfection. Blue Eyes just started a new building job and has been absent until bedtime, school has been doing STAR testing so the routine’s been totally different, and the teachers are trying to make up for it by plying their students with wheat and sugar. In other words, I’ve been single-mothering an off-balance, artificially hyped-up kid who, this week, melts down regularly and can hardly put two sentences together in a coherent fashion.

In meditative fashion, there is the part of me who objectively watches myself fall apart. “Huh! Interesting!” It observes. “She can’t keep it together even though she knows it’s not for real — even though she’s practiced for years staying calm on the inside no matter what’s going on externally.”

The other part of me, hooked-in emotionally, despairs for today and tomorrow. Not only tomorrow tomorrow, where he probably will once again wake up way too early and I won’t get my meditation time and he will be tired and crabby and a royal pain in the butt. I refer also to the other tomorrow: you know, fellow autism parents — the one where your grown-up autistic kid is alone, isolated, lonely, impoverished, homeless, and terribly mistreated by his/her fellow man. Yeah, that tomorrow.

Not my idea of ultimate perfection.

Anita Moorjani, the author of Dying to be Me, was living a life consumed by fear when she got cancer. After four years of fear and struggle she succumbs to death, where her “deceased” father and “deceased” best friend tell her to go back and live her life fearlessly.

I have wondered about people who have amazing NDEs: Do they ever have a bad day afterward? Anita says she has times where she feels disconnected:

When we live completely from the mind over a period of time, we lose touch with the infinite self, and then we begin to feel lost. This happens when we’re in doing mode all the time, rather than being. The latter means living from the soul and is a state of allowing. It means letting ourselves be who and what we are without judgment. Being…means that our actions stem from following our emotions and feelings while staying present in the moment.

Oh yeah. I can stop and just breathe for a moment. I tell my yoga students that one of the great things about the breath is that it’s always present — so, the moment you tune into it, you too are present. That gets you out of your crazy mind for a blessed moment, which can create a gateway into more moments of realizing our connection with the Universe — and, oh yes, even the ultimate perfection of it all.

Ram Dass talks about how we are all sandpaper for each other, smoothing out each other’s rough edges. Well, this week Joseph has been one hell of a sandpaper for me, and having my rough edges worked on has not been comfortable.

But those who get more than a glimpse of the other side come back and tell us to get out of the comfort zone. Live your life fearlessly! They say. Be totally authentic! Know that you are deeply loved and cherished, simply because you are you!

Breathing this in. Somewhere in my soul I know this is the truth. I know my son is just perfect and so is this life of mine, which gives me endless opportunities to practice profound teachings in the cold light of day.

Endless opportunities to open to the perfection of this moment. Endless opportunities to let go of fear and embrace the gift instead. To go forward in faith and security, loving and feeling loved.

Amen.

 

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.

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

Then he made his prediction about Blue Eyes.

He said that some scheming bitch would get him.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Today’s fathers are sure different from mine. Incredibly intellectual, my dad never reached out to hug me, or touch my hand, or to do anything affectionate in that way. Conversations with him consisted of his eyes looking at me over the newspaper, or whichever professional magazine he happened to be reading. Playing was something children did with each other.

That’s what last generation’s fathers were raised to be like. Maybe that’s why I never tire of seeing a father being tender or playful with his children. Dads today are so much more in touch with their hearts — so much more willing to meet a child where they’re at.

Blue Eyes was going to be an affectionate, hands-on father like that. But one of the most difficult aspects of autism for us parents is how it’s a one-way street: you put out all kinds of love and affection, and nothing comes back. Blue Eyes was sad when he’d come home from work, a whole day away from his son, and there would be no light of recognition in Joseph’s eyes — no smile saved just for Daddy. No nothing.

Ouch.

Neurotypical kids naturally take the apprenticeship role, seeking to learn from their elders, trying to be just like them. This is a great way for dads to interact with their kids, and Blue Eyes, a builder and a craftsman, looked forward to sharing his expertise with Joseph.

But autism drives a wedge in the master-apprentice role. Autistic children are often not interested in learning, in expanding their worlds. Comfort is found in a small world — a narrow, predictable world.

Thanks to various interventions and a lot of grace, the one-way street with Joseph has substantially more two-way traffic than it used to.  We have also worked hard on developing his apprenticeship role, and it’s coming along nicely.

The Waldorf system maintains that the mother holds the child, literally and figuratively, until s/he is seven. Joseph turned eight this spring, and it’s become apparent to us that Blue Eyes needs to step in more. Fearful by nature, Joseph will become even more of a mommy’s boy if Dad doesn’t take on a more prominent role.

Though Joseph’s had a lot of recovery, there are still many autism-related obstacles that Blue Eyes has to wade through. John, our RDI Consultant, has been working with my guys on how to do stuff together, like build simple things. I’m proud of Blue Eyes for letting go of past hurts and rejections, and moving forward to create a close relationship with Joseph as he is now.

It’s a funny thing: Every time I step out of the picture and the guys do something together, Joseph’s energy is different. He thrives under his dad’s attention. Blue Eyes challenges him more — he needs that — and models how to be a whole, healthy man. Things I can never do.

So here’s to dads: what a priceless role you play. Kudos to you, Blue Eyes, for your resilience, your love for your son, and your willingness to keep showing up in his life no matter what. You’re the best.

Happy Fathers Day to all you amazing men, and most especially to those of you who stay in your kids face when you’d rather not; for those of you willing to do the hard things; and for those of you who never, never give up on your special needs child.

We have friends whose daughter just went in for emergency surgery. Annie had a melon-sized growth in her torso that the doctors removed, but along with the growth came a large amount of muscle mass that she will never have again. Annie has been an active, vibrant young woman, and her life will never be the same.

Annie’s mother spoke tearfully about it to Blue Eyes today. She said, “You guys have been through a lot with Joseph – medically, emotionally, and otherwise. How do you do it? How do you bear it?”

It’s a good question, and one to which there is no simple answer. But in this post, I’d like to explore how a parent bears it when their child is limited or in pain.

Right off the bat, I’d say it’s a journey, not a destination. I’ll go weeks where I’m feeling okay about having a kid with autism. I’m pretty sure I can handle it and, even though it’s got its rough moments, we are navigating our way through.

Then something will happen. Maybe I’ll spend time with my friends, for instance, who have neurotypical children. To me these kids seem always up for an adventure, whatever it may be. They run over to grab my hand and engage with me. They are – well, the way I think kids should be.

Did you hear that word I used? Should. Should can get a person in a lot of trouble. I start shoulding all over myself. I touch in yet again to that sad, tender place inside that wishes – oh, wishes with all my might – that my life was different. That I had one of those other kids. That feels I should have gotten one of those kids instead of the one I got. Or, at least, since I got one with autism, that I should be able to handle it better.

Wheeeee, off I go into a downward spiral. Oh, and by the way, I shouldn’t be going into a downward spiral.

It’s the mind trips that kill you. Future tripping, past regretting, if onlys, shoulds. It’s the comparing mind that looks over there instead of focusing on the here.

All that stuff — mind tripping, comparing, etc — they all lead to pain and suffering. There is nothing else inherently causing my pain. I have met the enemy, and it is me.

I pray. I cling to the robe of the Master. If I can’t find it in me to open to God, then I find my breath. I breathe, slow and deep. What I love about the breath is that it’s always in the present…you can’t breathe in the past or the future. So being mindful about the breath gets me back here. It lessens the craziness of my mind.

I remember that this journey is a marathon, not a sprint, and that I need to pace myself, even take time out sometimes. I remember what a wise friend told me: one has to learn to trust even when in pain. So I renew my trust – again and again and again.

There is so much more going on than I can see in my little perspective. If, indeed, God is a just and loving God, then I have to trust that what’s happening is supposed to happen. My son has his own life lessons, his own karma. That part is out of my control. For my own sanity, I must let go of what’s not mine and give what’s God’s back to God.

Perhaps the last way I have to bear it, but so very much not the least way, is friends. When I can’t take another step, my friends hold me up. Sometimes it’s just a phone call to another autism mom to say, “Hey, it’s rough over here. Talk to me.” Sometimes it’s a heart to heart with lots of tears. Whatever form it takes, it’s a sweet balm.

Autism parents, we are not in this alone. We have each other – and, even if it’s just through the internet, we can lend a virtual ear, a shoulder, a word of wisdom.

At some point, the downward spiral changes direction. Coming back into the here and now, I breathe a prayer of gratitude for what we have, for the challenge we’ve been given to grow through, for the chance to breathe the air of this earth.

And once again it hits me that it’s not about waiting for the storm to pass. It’s about learning to dance in the rain.

Just for today, then, I’m going to dance. Letting the cold, wet stuff from the heavens fall all around me, I’m going to celebrate all that is, all that isn’t, and all that is yet to be.

Joseph was a real stinker these last few days. Whiny and selfish and resistant. Screaming and hitting things in anger. A real pain in the butt.

In Eckhart Tolle’s viewpoint, I responded by letting Joseph’s pain body trigger my own. I got into a terrible funk. No matter how enlightened I tried to be about it, no matter how I wanted to shift, I seemed to be stuck in my own bad mood.

Lately I’ve acquired the lovely habit of asking for, and receiving, help from beings unseen. During this funk I forgot all about that. I was in it alone.

Or so I thought. I may have forgotten my angels, but my angels apparently hadn’t forgotten me. Since I wasn’t asking for their help, they seem to have decided to work through someone with skin on.

Joseph’s school is a mixture of income levels, races, and blue and white collar workers. I hadn’t found any other spiritually-inclined people until a couple of months ago, when I connected with the mother of a 6th grader, a chiropractor who knew all my favorite books and grokked me completely. We haven’t gotten to know each other too well yet, but this morning she ran over  to tell me about a children’s book she’d been listening to on her way to school.

It’s about a mouse, she said, who was reading a fairy tale that ended with happily ever after. But in the mouse’s life, it wasn’t going to end happily ever after.

What to do, in that case? the story asked. The answer: Live bravely.

Live bravely.

With that, Kaya gave me a hug and ran back to her car.

Thanks, beings unseen.

I know that none of us are guaranteed a happily ever after in earthly life, but with autism the odds are a lot lower than average. What to do, in this case?

Live bravely. And I would add to that, love bravely. Love even if autism seems to block our children from loving us back. Step into the tough times with courage, because they’re what’s been given. And because courage feels a lot better than anger and upset and big funks.

Of course I had to google the book Kaya was talking about. It was Kate DiCamillo, The Tale of Despereaux.  Here’s another quote from that book:

Everything, as you well know . . . cannot always be sweetness and light.

The Masters have given us renditions of this sentiment many times. You should never expect a smooth, problem-free life, says Swami Satchidananda. A smooth life is not a victorious one, says Yogananda. The Bible says, Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope.

Happily ever after is some far-off, ambiguous thing. All we have is right here and right now. I am focusing on living bravely in this moment, no matter if war, death, destruction, or a kid in a really foul temper dance around me. And I know — that is, know — that  you and I are constantly being encouraged by beings both seen and unseen.

Ever think about that word encourage? In-courage.

Let’s do it, shall we? Let’s live bravely. Encouraged and courageous, asking for and receiving help, never expecting life to be trouble-free. Willingly stepping into the fray when we know we can do some good there.

Living bravely may not be living happily ever after, but it must at least point the way there.

Last week I attended a presentation on bullying and special needs children. I learned that not all special needs kids get bullied. The ones that are really different — seriously impaired, for example — don’t get bullied much. It’s the ones who fit in, but don’t fit in, that can get the royal treatment.

That would, of course, be kids like Joseph.

Bullied children fall into two categories: the submissive or passive victims, and the provocative ones. Special needs kids are likely to fall into either of these categories.

Lately I’ve seen Joseph go from the passive type to what could be seen as provocative. Up until recently (like last week), he’d look at someone and say loudly, “That’s a fat girl.” I think I’ve finally drilled into his head that we don’t comment on people’s body size in public, but it’s just a matter of time before the next inappropriate thing comes up. Autistic kids don’t have the social barometer that comes so naturally to the rest of us. Joseph could easily, and innocently, piss off a kid on the playground — the number one place for bullying.

But you know what? I’m not worrying about it. I went to the presentation to get the facts and to learn what Joseph and I can do about bullying, but I am seriously and intentionally not worrying about it.

Here’s what I am doing:

I am focusing on being present and developing what I need now in order to deal with whatever comes later. The thing about the present, to quote C.S. Lewis, is that “there, and there alone, all duty, all grace, all knowledge, and all pleasure dwell.” It’s only by being present, which to me means aware, open and connected, that I can be prepared for that future stuff. This goes for bullying, financial crashes, and happy Christmas days.

I learn to listen now, when it’s easier, so that I may still be guided and connected later when, perhaps, it’s more difficult.

Fear lives, not in the past and very rarely in the present, but, by and large, in the future. In our fantasies about what could happen. In our “mind stuff,” as the yogis put it. We weren’t given the ability to peek around the corner at our future. We weren’t meant to, I figure! Yet these fears we have, which we project into the future and which seem so very real, have got to be one of the best tools that the Dark Side has.

In a rapid switch from the Dark Side to the Light, I will bring in Yogananda, who said we should have our feet on the ground and our head in the clouds. I love this analogy. With my feet on the ground I learn about bullying, and with my head in the clouds I trust that, wherever Joseph goes, God is.

It seems to me that this is truly a place of peace. Finally letting go of the need, or the imagined ability, to take care of it all myself, but nonetheless doing my part. Finally trusting that God’s love is a real thing — something constant, steady, and deep that will hold Joseph and me tenderly through the rest.

Is it just me, or does everything end up back at God? 🙂

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

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

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

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

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

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

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

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

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

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

God, are you really here with me?

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

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

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

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

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

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

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

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

Joseph is really into animals, so last week we took the loooong drive  to San Diego to show him one of the world’s biggest, and best, zoos.

The idea alone was so exciting for him that, a few days before our trip began, he started waking up at 4am just thinking about it. Now, Joseph is not the most quiet of children, so we all started waking up at 4am. Blue Eyes and I were therefore just as eager for the departure date as Joseph. 🙂

We had three days in San Diego, and the first day at the zoo was really fun. Joseph decided that the first animal we had to see were the hippos, because they were most playful early in the morning. From there we saw many wondrous things, and learned a lot as we went.

Before the trip, Joseph had made the occasional comment that it would be too crowded and noisy for him, and I wondered if it would be. But it’s a quiet month at the zoo and Joseph did GREAT. We stayed from opening ’til closing, Joseph made a friend at the crocodile exhibit, and we all had a terrific day.

RDI has a concept they call Productive Uncertainty. If you can envision a graph that is a hill, then Productive Uncertainty is the part of the hill that rises up to the peak. That first visit to the zoo was new for Joseph, but the uncertainty was productive: fun, pleasant, and educational. It helped Joseph to feel competent.

We gave Joseph the choice of another day at the zoo so, after doing other things on our 2nd day in San Diego, our 3rd day saw us back at the zoo. But this time it was different.

From the opening minutes, Joseph started doing odd, jerky, movements accompanied by flapping and singing. I call it his “weird dance,” and indeed it does look, and sound, weird. I got on his case, snapping at him to stand normally and keep his arms at his side. All morning we tussled about it.

He also chewed like mad. His shirt collar and sleeves were soaked with his saliva. I kept jerking things out of his mouth, my frustration mounting.

Looking back — which is always the best vantage point — I can see that Joseph was, for whatever reason, stressed and anxious. But even with all that weird dancing and chewing, neither Blue Eyes nor I thought about stopping and regrouping.

When we sat down for lunch, Joseph lost it big-time. He screamed and screamed, sobbed and moaned, said over and over that he just wanted to sit inside the car. I held him for about 15 minutes of this, aware but not really of curious onlookers, while Blue Eyes and I tried to decide what to do.

I’m learning that Joseph knows best how to calm himself down (“self-regulate” is what we say in the trade), so we finally gathered up our food and ate lunch in the car. What should we do? Blue Eyes and I asked each other. We’d spent a lot of money to go to the zoo and we’d like to be there. Besides that, we’d like it to end up as a positive memory for Joseph. But Joseph insisted he wanted to go back to the hotel. We were confused.

While Joseph settled down and ate, I closed my eyes and asked for help. The Productive Uncertainty graph popped into my mind, and I realized we’d gone past the productive peak of the graph, moving downward to the point of  Threat and Unproductive Uncertainty.

It looked like it was all downhill from there, but I shared my understanding with Blue Eyes and wondered aloud if we could get back to Productive Uncertainty.

I am grateful that Joseph has a keen sense of humor. We probably spent an hour in the car, and then we started teasing and joking with Joseph, who laughed and laughed. We took that happy energy and swept him out of the car with the promise that we’d simply watch the sea lion show and then leave for the hotel.

After laughing through the show, Joseph wanted one more trip on the Sky Tram. Then he had to see the petting zoo one more time, and one thing led to another. It was late in the day when we left the zoo, with smiles and happy memories all around.

RDI is big on reflection and, looking back at this whole experience, I see that I blew it by not catching the signs that Joseph wasn’t doing well. In fact, I made it worse by being on his case. But, on the positive side, we made it through a breakdown — and a large one, at that. We shifted from Unproductive Uncertainty to Productive Uncertainty, leaving us all feeling more competent, resilient, and a little wiser as well.

Lastly, I have in the past considered myself to be unintuitive, but my view is shifting. When I asked for help and got the image of the graph in my mind, I realized that intuition is simply having the door open. Most of us go around without asking for help, and it seems to me now that there are angels and guides who can’t WAIT to help. But they won’t come uninvited; we need to ask.

My prayer is to keep that door open all the time. Especially when Unproductive Uncertainty looms.

It was a hot day today, and Joseph had several nosebleeds. He freaks out when his nose bleeds. I don’t know why it’s so terrifying for him — but there is a lot about Joseph that I don’t understand.

In this particular freak-out, Joseph screams; he cries; he grabs huge fistfuls of Kleenex and fiddles madly with his nose. I encourage him to lie back and he fights me as if I’m trying to drown him. If I use some force to get  his torso down on the bed he thrashes his legs wildly up and down, crying, crying.

As I work with my child, trying to simultaneously calm him down and stop his nosebleed, that quote from Byron Katie pops into my mind:

No one has ever been angry at another human being; we’re only angry at our story of them.

I have major stories about Joseph. This blog is full of my stories about Joseph. I get mad and sad and scared and anxious because of my stories about Joseph. In many ways, they run — and sometimes ruin — my life.

Here I am, trying to help a kid whose nose is bleeding and who, according to my world view, has blown things way out of proportion. There are reasons to panic, I figure, but a nosebleed is not one of them.

Then I let go of my story and hang out with him in his discomfort. I don’t really want to be present with him, because then I, too, have to be uncomfortable. I have to feel, in part, what he’s going through — ride out the fear and terror with him.

The first time I went to India I was with 51 other spiritual pilgrims. From our comfortable, air-conditioned bus we’d look out at the city buses and see Indian people sitting nine to a seat (lots of lap-sitting), along with chickens, sweat, dirt, food, babies — the whole swirling mass of humanity. I felt separate but also somewhat superior, watching them from my cocoon of safety.

My stories about Joseph are like that air-conditioned bus. When I see Joseph from there I am looking down at him from a safe place. I am protected. I am better than him.

Eventually my Indian tour ended, and I went from air-conditioned buses to city buses, hanging out right there in the muck of humanity. You know what? It wasn’t so bad. It was — fun, kind of. I remember the woman who, finding no seat, held her baby out toward the back of the bus, silently asking someone to hold it for her. A man held out his arms and took the baby.The woman turned around and never looked back until it was time for her to get off the bus.

We wouldn’t do that in America. A complete stranger holding your baby in an overcrowded bus? Never. But that’s the kind of thing you see when you ride in the city buses of India.

It’s out of the comfort zone, for sure. Way out. But I really see the value of getting out of my story and into the reality. Just sitting there with Joseph as his nose bleeds and as he screams — not fighting it, not wishing it was otherwise. Trying to assist him without trying to fix him. Letting him be just the way he is in his own perfection — because it’s only my story that says he’s not.

Life is messy. But if it’s true that God sees us in our perfection — if, in fact, God has no stories about us — then every time I can do that with Joseph, I am seeing the world from God’s perspective. I am touching God.

I want to know the mind of God, Einstein says. Everything else is just details.

Me too, Albert — me too. So bring on the nosebleeds, and I’ll work on being right there in the muck, in the mess, and embracing it exactly the way it is.

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.