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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.

 

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I have a close friend who is deeply Christian. This is unusual, because generally I steer clear of Christians — for the sole reason that they tend to regard my spiritual outlook as, well, dead wrong. I get the impression that, though they think I’m a nice person, they also think I’m headed straight for hell once this earth journey is over. I don’t mind if they think that, but it doesn’t make for close friendships.

For this reason it took me a long time to mention A Course of Love to my friend Ellen. After all, A Course of Love (ACOL) is said to be Jesus’ words coming through Mari, a woman who is alive and well in this day and age. When I did finally mention that I was co-leading a group on Friday mornings, I hoped we could leave it at that. But she’s seen how this course has shifted me, so she asked for specifics and even indicated an interest in attending. I gathered up my courage and explained how ACOL came about, dreading an anticipated response that the Bible was Jesus’ only true word and the only one we’ll ever need.

Ellen is a surprising person, though, which I guess is why she’s my only Christian friend. She said, God spoke through prophets way before Jesus’ time. Why wouldn’t Jesus continue to speak to us now? Then she attended and felt that the words really spoke to her. I don’t know if the course will stick for her, but I am really, really impressed that she attended.

It is amazing to feel Jeshua (most ACOL people refer to Jesus in this way, which is the Hebrew pronunciation) permeating my heart, mind and soul. I mean, wow, it’s like he’s whispering into my ear sometimes. That’ll change your life. For the first time ever in this life, I have actual experiences of joy.

It’s interesting to feel so fed spiritually on the one hand, and to have an intense 13 year-old autistic kid on the other. I understand why so many families stop having kids after an autistic one shows up – they are a lot of work! Add to that the hormones and turbulence of teenagerdom and, wow, that’ll change your life too.

I am so grateful that Joseph has friends. He invited his two besties over last week to hang out. It was the first visit for one kid, the sweetest Aspie (Aspergers) kid I’ve ever met. Within the first five minutes, he’d pointed out the spider web in my dining room, but never mind. We autism parents overlook that kind of thing. 😉

For the last few months I have taught yoga to Joseph’s 6th grade class in the barely-clandestine hope of getting him interested in it. While it succeeded with most of the girls, it’s been an “Eh” experience for the boys, which I can understand. Most hatha yoga classes are 95% female, after all.

Through the years, Blue Eyes and I have tried to get Joseph interested in yoga and meditation. It would be so good for his anxiety – and everything else too! But Joseph has resisted it at every turn, so we have dropped the subject for the last few years.

However. Tonight I was listening to an amazing guided meditation by a man associated with ACOL, someone Jeshua speaks through. It led me to a very deep place and I experienced the Christ presence pouring through me. I can’t remember the details of the conversation with Joseph, but later on we were talking and I said, “Well yeah, especially when Jesus is speaking to you.”

“WHAT?” Joseph exclaimed. “JESUS?” We talked about Jesus coming through these channels, and he was incredibly interested. I realized that, for him, Jesus was some dude from way back when who’d told people to love each other and who’d been dead for a long time. “How can I talk to these people?” He asked me. “There’s so much I want to know about my future.” I said that the message from Jeshua was to learn to listen within, to get quiet enough to hear that still, small voice in oneself. It’s about a relationship between each one of us and him.

Joseph asked some questions then about meditation, and I guided him through a 5-minute session. It ended very positively, and we agreed that we’d do that every night before bed.

Once again, wow. Not only does Jeshua still speak and write, he also still works miracles. A little meditation practice could go a long way in helping my kiddo through the teen crazies. Thank you, God.

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.

fair2016bThrough the years in our little family, there has been a subtle but growing attitude of autism being not okay. Blue Eyes and I — and, for that matter, Joseph’s school and doctors and therapists and specialists — have all attempted to “normalize” this kid. And it’s succeeded pretty well. This school year the last major sign of “I’m different” got removed when Joseph insisted that he no
longer wanted an aide. The school staff, bless them, respected his decision and has pretty well phased the aide out. It’s going okay — his academics have declined but we’ve never expected him to be a scholar, and his level of independence has increased dramatically. At this point you’d have to sit down and get to know him a bit before you could figure out that he’s not exactly typical.

Cause for celebration, right? Well, hold on, hoss, because we are being shown another perspective.

Blue Eyes and I just completed a fabulous 4-day playshop (as opposed to workshop) on awakening to presence. Wow! Life is different when you tune into that expanded awareness, that conscious presence, and truly grok that you embody it at all times. Many gifts were received during the playshop, and one of those was our attitude toward autism.

We were talking about how sound can be a doorway to presence: music, gongs, nature sounds, etc. The instructor pointed out how we tend to filter sound rather than allowing all sound to be in our awareness and to help us access presence. During the break, I asked the instructor, John Mark Stroud, about autistic people, who often can’t filter sound.

He said that most autistic people were highly advanced souls who couldn’t quite fit the whole “typical” scene. He said that many came in with amazing gifts — not savants, but highly gifted.

Nice, right? Well, I didn’t think so. With incredible resistance I responded that it was hard to imagine a 14 year-old in diapers as an advanced soul and that no, they didn’t come with gifts.

Later, Spirit (and Blue Eyes — thank you, honey) spoke to me about that strong reaction. I realized that, of the autistic kids I know, there truly are gifts. One is amazing at technology. Another plays the piano so beautifully it can make you swoon. Our own kiddo deeply loves, and is so loved back, by his classmates. His imagination and creativity are incredible.

As I opened to that, Blue Eyes and I had conversations about how we’ve normalized Joseph — and was that a good idea? I mean, how great is this “normal” life anyway? We spoke again to John Mark, who suggested that we tune in with Joseph on a soul level when we’re with him (and when we’re not). He suggested that we let Joseph teach us some of his gifts, that we appreciate the amazing soul he is. That we step out of the parent role and enjoy being presence together. That we open to the soul agreement we’ve had to incarnate together as a family.

For many months there has been major tension between Blue Eyes and Joseph. But that evening at home, they sat together on the couch and there was peace. Joseph’s stomach was hurting, and Blue Eyes brought him a bowl and helped him while he vomited a few times. It’d been years since Joseph vomited, and later, when I asked him how he felt, he said he’d gotten the bad stuff out and felt better.

We mentioned this incident to John Mark the next day – how Joseph had maybe eaten a bad burger at the restaurant. John Mark said that no, what had happened was that Joseph was vomiting out the toxicity that had been in our relationship with him. Wow, what a perspective.

Since then, it’s been a whole new relationship. Joseph still flaps his hands and jumps around autistically when he’s excited or creative, but it doesn’t trigger us. In fact, it seems pretty cool. I had the opportunity to give one of Joseph’s friends, another kid with autism, a big birthday hug, and I could feel his energy rising up his spine when he felt my unconditional love.

Something stiff in me has melted. Last night I thanked Joseph for coming to be with Blue Eyes and me, and he responded very simply with “You’re welcome.” Later, when Blue Eyes said good night to him, Joseph said, “Thanks, Dad.” He didn’t say for what, but Blue Eyes knew. Thanks for opening to who he is, thanks for appreciating the gift he is and the gifts he brings.

I woke at 3:00 this morning and asked Spirit why I was awake. The response was that my soul was longing to express this. Thank you for reading. I pray that, if autism is in your life, you too may open to the soul agreement you and your beloved made to be together, and that the gift of it fills your heart.

One never forgets the day someone comes to evaluate one’s child for autism. In my case I had called around to a couple of local agencies to ask what to do when you suspect it, and I’d been referred to what was called Infant Program. The two leaders of the program came to visit. Two year-old Joseph sat in the living room, his back turned to us, while we talked.

They weren’t sure, but they suspected I was right about the autism and asked me to bring him along to the program. Their parting words were, “Stay in his face all the time. Don’t let him go off into his own little world.”

So far I’d been raising Joseph the opposite way. I would marvel at what an easy kid he was, looking after himself while I cleaned the house or whatever. It was a big deal to drop everything and stay in his face all of the time, but  I did my best. Then tutors started coming, and they stayed in his face when I wasn’t. Later, when we got involved with Relationship Development Intervention, I learned to use the many opportunities life gives us as a way to keep Joseph constantly engaged and relating.

Ten years after that visit from Infant Program, Joseph has turned out to be a very social kid — more social than his introvert mama! He loves his friends, is now inviting himself to their homes for sleepovers, and is still (sigh) asking us for a brother.

What I am learning about puberty, however, is that it’s time to step out of his face. Joseph is getting more private about things: going into his room and shutting his door, not readily letting us in when we knock. He got some time to play with Minecraft yesterday, and he sat underneath a blanket to do it so that I couldn’t see (and yes, I’m sure it wasn’t porn – we have filters set up 😉 ). Almost 48 hours went by recently without my seeing him, as he was with friends and at swim team, sleeping in in the mornings while I snuck out to work for the day.

It is an odd new practice for me. I am so used to being in his life, connected umbilically. It is natural that he  pull back — this is what puberty and teenagerdom is about — and yet it’s hard to get that “stay in his face” advice out of my head.

One of Love and Logic’s most beautiful teachings is that, when there have been or are going to be times of separation, like before bed or first thing in the morning, the parent touches the child in some way — as if to say, I missed you. So good to connect again. Our morning touching used to be a huge hug that we both loved. Now, when I try the hug, Joseph shrinks back. I find other ways: walking by, I’ll put a hand on his shoulder — but our cuddle times are now precious and few.

Sometimes I have to give myself a talk about the shrinking from touch and the decrease in connection. This is not the autism, I say. This is puberty. This is natural, this is right. It’s different, but it’s not bad. Panic is not necessary.  

I know that’s so. But the withdrawal kind of looks like autism, you know? So I get to work with myself.

Recently my dear friend Terese texted me. She’d been in the shower, thinking about something else entirely, when out of the blue she was given some advice that she knew she HAD to pass on to me. Dripping wet, she stepped out of the shower to put it into a text before she forgot the words. They were:

Remember: He is not the same person he was two years ago. If you can change, so can he. Trust in the process!

My dad, who passed away some years ago, was a seeker like me. At turbulent times we’d say to each other, “Trust the process.” I truly felt that my dad was speaking to me through Terese. I was reminded how very supported we are, by beings both seen and unseen.

Now, I am replacing the advice to “Stay in his face” with “Trust in the process.”

Wishing you trust in your process, and awareness of how very supported you are. Blessings.

 

 

 

 

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

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

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

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

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

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

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

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

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

Big exhale.

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

IFJoseph turned ten yesterday. He had a wonderful day and was greatly celebrated both at home and at school. This morning he came into our room in a grumpy mood. With deep feeling he said, “I want it to be my birthday again today!”

Wouldn’t it be nice to be greatly celebrated every day? In this spirit, I am working on seeing what’s good about the people in my life and acknowledging that to them. I have a friend who, when her husband comes home in the evening, says, “Thanks for going to work today.” A small thing, but a big small thing. I think about how I would feel if I got thanked for making the dinner or doing the dishes or just for who I am. I want to notice those things in others. There is, after all, so much good in people — in the world in general. If we have the eyes to see.

When Joseph was little, I used a Halloween analogy to explain God. You know how people dress up in all kinds of costumes on Halloween? I’d ask. Well, every day is Halloween to God. God dresses up like you and me and every single person in the world. God dresses up as light, as color, as sound, as plants, as animals. And the trick is to see God through those disguises, because s/he is right there!

When you gaze out at the ocean, Yogananda said, You will be looking directly at me, United with my Beloved on the altar of the horizon.

God even dresses up as autism. It’s not God’s best look, to my way of thinking, but nonetheless there He is. When I look beyond the veil of flapping and tantrums and lack of eye contact, I see Her. I don’t know why God chose this particular costume, but why not? God is, if nothing else, playful and mysterious.

The divine play, the yogis say. The lila. When we celebrate the lila and the many costumes of God, then we are able to see God behind the whole adventure.

Spirituality to me means having a joyous spirit. I don’t know about you, but I am at my most joyous when I remember who is throwing the party, and when I realize that we are all merely players in a play. Then I smile inside. Then I feel that Presence within, around, everywhere. And I celebrate.

There You Go Again

~ by Adyashanti

Ever since I stepped out of imagination
and into the heart of things
I have become so much less spiritual.

Heaven, hell and earth
hold no meaning for me anymore.
For I am neither coming
nor going, nor staying put.

All I do is notice all the various ways
that Light weaves itself into dreams.
When someone asks me who they are,
or what God is…
I smile inside and whisper to the Light:
There you go again… pretending…

Wishing you a day of celebration. Because wherever you go, and whatever you encounter, God is.

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.

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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.

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.

Relax — this is not a post espousing Christine doctrines; Yoga Mother is not the type to do that. This is about a more personal kind of crucifixion.

This past weekend was  a very interesting one for our family. We rent out the small cottage on our property as a vacation rental. Usually people come, enjoy whatever they’re here for, and go. Sometimes we meet them and exchange a few words; often we don’t.

This time it was completely different. A man named Eban got lost finding our place, gave up, and then crashed his car heading somewhere else. Blue Eyes picked him up to bring him here and, from that moment on, he was part of our lives. A man in his late sixties, he needed to be driven here and there; he needed emotional support dealing with the car; he came over for meals.

During all this, we talked. He is a psychotherapist and had some really valuable things to say about the autism in our lives.

crucifixion-altarpiece-detail.jpg!BlogIt is a crucifixion, he said: The ego is getting crucified. What is the ego? I’ve heard it defined as the part of us that says, “Yeah, but.”

Yeah, but I didn’t sign up for autism.
Yeah, but everyone else has it so much easier.
Yeah, but I don’t WANT it to be this way.
Yeah, but…(What’s yours?)

Terese and I took our boys to the playground yesterday. Her autistic son scared a little boy by going down the slide right after him, basically pushing him down. His mom rushed over, picked up her son to hug and comfort him, and then took her kids to the lower playground to get away from us. Eventually we went there too, and again Terese’s boy disturbed the younger one. The mom threw Teresa a really dirty look, gathered her kids, and left.

And so another nail got hammered through Terese’s hand. Another sword punctured her side.

Yeah, but I’m a good mother. It’s not my fault my kid acts like that. Why are people so judgmental?

Eban says that it’s all about vulnerability. Look at Jesus, he said: A great master with all the powers in the world, he nonetheless made himself completely vulnerable.

“Yeah, but look where that got him,” I answered (notice my yeah, but).

“Ah, and look what happened after that!” he responded.

The resurrection.

It hurts, this thing called autism. This man who magically appeared in our lives says to let it hurt; to be vulnerable enough to open to the pain. In this way, he says, we can be molded. In the suffering, he says, there is grace. Find the grace.

I don’t claim that autism has the monopoly on crucifixions. Most of us have the so-called grace of something that crucifies our egos! Mine happens to be autism.

And so I wish us vulnerability. I wish us trust that God loves us so much, and knows us so dearly, that S/He gave us our particular crucifixion. I wish us freedom from false identifications (another definition of the ego: The soul identified with the body/mind) so that we resurrect in our full glory as unlimited beings, as children of the light. May we truly know that we are spiritual beings having a human experience.

May we open in surrender.

Into Thy hands, oh Lord, do I commend my spirit.

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.

 

Have you ever struggled with a problem for years and years? Doubted and worried and despaired about something for a long time?

I have. For many years, Blue Eyes and I have struggled over the issue of who would look after Joseph if our demise should come unexpectedly early. Our solution — not dying — is a good one, but not, ahem, entirely under our control.

Asking someone to take on a child with autism is tough. When it came to naming a guardian for Joseph, Blue Eyes and I felt that we would be placing a heavy burden on whoever we asked.

This wasn’t the case with my friend, Maya. She called her brother to ask if she could name him as her (neurotypical) son’s guardian. He replied that he’d love that. But the bad news, he continued, was that he was going to have to kill her so that he could be sure to have the kid.

Sweet, huh? We didn’t get quite the same response when we asked some relatives to be Joseph’s guardian. We got a no — and I understand. Perhaps, were the roles reversed, I would be the one saying that.

Who takes on an autistic kid voluntarily? I wouldn’t have done it in a sane, rational mind-set. On the soul level I obviously chose it, but most of us folks with skin on operate rationally.

It’s just different living with autism. Your kid needs you a lot more than the typical kid. You don’t get the same opportunities you might otherwise get. It’s restricting. While it has its own rewards, it doesn’t give one the satisfaction one has with a typical child. It’s draining. It’s exhausting. And you don’t know if it will end with their adulthood. You don’t know if it will ever end.

What are we supposed to do — ask someone we love to take on this eternal intensity? As I said, this question has had its tentacles running through our lives for many years.

I have a friend who runs several adoption agencies. She says there are, indeed, families who open their arms to special needs children. They welcome them — they want them. These people have a calling I don’t have. They must be saints. It’s good to know that these people are out there.

For some years, that was our plan: if we were to die while Joseph was a minor, he would go to one of these families. It was sad to think of turning him over to someone he didn’t even know, but it was the best solution we could come up with. But then we had to ask, what about when he was an adult? What if he couldn’t be independent? Ugh. Nasty, ugly dilemma.

Not long ago we had another inspiration: We have a friend, Robert, who we consult with from time to time about autism. He knows Joseph well, we like his values, and he and his wife already have children, so they get parenthood. With trembling fingers we sent an email popping the question (we figured an email would give him time to think and discuss with his wife).

They said yes. They said yes! People want Joseph – people who would go into this with their eyes wide open. God bless this man and his wife. We are so fortunate to have them in our lives.

Something in me came unglued, in the best way possible, when we got that yes. A tight fist released. A held breath let go. The shoulders dropped a couple of inches.

“Why do you doubt?” Yogananda once asked one of his disciples. Indeed, why do we doubt? Everything is a symbol for everything, I think. Worrying so long and intensely about guardianship is a reflection on my own self-doubts. Who, after all, looks after me? Does Someone really do so?

Lately I’ve been meditating on the word let. Let means invite, open the door, allow, choose. I let myself feel supported. I let God show me the way. Robert and his wife let in the possibility of a real life-changer by saying yes to guardianship.

Always there is the presence of God, right here and right now. All we have to do is let that presence in. It’s a sweet, simple shift: a heart opens, a mind stills, a prayer ushers forth, and there God is. There God always is.

Why do we doubt? I guess because all the best stuff — the angels that surround us, the love that’s constantly flowing to us, God’s whisper in our hearts — is quiet, is invisible, is behind the veil. If we could just know we were held, we could stop trying so hard to hold ourselves — and others — up.

May you and I let in the angels, the love, and the still, small voices. May we let in the possibility of a Guardian way beyond anything we can figure out with these rational minds.

May we know, in the depths of our being, that this Guardian looks at us, with all our goods and bads, and, with infinite love and not a moment’s hesitation, says, “Yes.”

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.

Here’s to the pilot that weathered the storm. — George Canning

Joseph’s only been in second grade for a couple of weeks but it seems that, academically, this is where the feces starts to hit the rotating oscillator. Joseph asks me, “Can I go back to Kindergarten? Kindergarten was fun.”

Sigh. No, Joseph, you can’t go back. You must weather the storm as best you can, even as the intensity increases. That’s all any of us can do.

Tonight was Back to School Night, where the parents drop their kids off in the cafeteria to watch cartoons while they visit their kids’ classrooms and hear a talk by the teacher.

The cafeteria is not a fun place for Joseph. It is noisy and full of unpredictable kids. Blue Eyes and I discussed ahead of time that we might need to do what we did last year when Joseph couldn’t handle it: He and Joseph would walk around the campus while I visited the classroom. Afterward, we would go to the ice cream social as a family.

But life is messy, and autism makes it messier still. Joseph indeed couldn’t stay in the cafeteria for cartoons, so he and Blue Eyes hung out. Blue Eyes was feeling sick, so, after fulfilling his duty with Joseph, he went and lay down in the car. Joseph and I headed into the cafeteria for the ice cream social and stood in line. Around us kids loudly goofed around, and parents talked and laughed. The sounds ricocheted around the  room with a life of their own.

Joseph’s shoulders edged up toward his ears. His jaw set and he started wriggling around, as if trying to physically remove himself from the situation. But the ice cream wasn’t far away, and he managed to keep himself together enough to attain the coveted goal.

I admire the way Joseph navigates the world, managing his sensitivities. In this case, Joseph wanted the ice cream but not the social. As soon as we got the ice cream, he suggested we eat somewhere outside the cafeteria. He chose a spot out by the playground. No one else around — just him and me. The sun was setting and the clouds were peachy fire. The goats nearby maaaahhhhed and the breeze blew softly on us. It wasn’t the ice cream social, but it was lovely.

Not a bad way to weather the storm, really.

He is starting to think about two things more often: God, and his future living situation. You know me — I’m loving the talks about God. Is God big? Yes, but he’s also teeny tiny. Did God make the rivers? Yes, but he also is the river. God is the drop and God is the ocean. And that big ocean? It’s completely contained in the drop. I could talk about this forever.

So far, Joseph envisions his future living situation like this: a house next to Blue Eyes’ and mine, one that he helps to build, with lots of pets and a swimming pool. Oh, and no girlfriend or wife.

Kind of like an ice cream social without the social.

Maybe this is how Joseph will navigate through his future. Maybe things will change and he will want that girlfriend or wife — or at least a housemate or two with skin on. I am willing to leave these things unanswered for now, and to honor the way my son chooses to carve out his life.

Though his choices may well navigate him out of the noisy cafeteria, I pray that — like tonight — he ends up in a place that feeds his body, stimulates his mind, and nurtures his soul.

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.

Our church had a fun bounce house set up for the kids this past Sunday. Us parents chatted as we watched our kids leap and tumble about. Blue Eyes and I got into a conversation with a man who told us that he had five kids: four girls and one boy.

“What I didn’t know about girls,” he said, “is that they cry so much!” I assured him that it never really stops, and we smiled together. Then he pointed out some of his girls, one of whom was standing at the entrance to the bounce house — sobbing her little eyes out. Blue Eyes patted him on the shoulder and said, “Sainthood is just around the corner for you, mate!”

I loved this man’s response.

He said, “Not me. I’m just broken all the way through.”

I’ve thought about this broken-all-the-way-through concept ever since. I mean, really, what is a saint but someone who is broken all the way through? Saints are known for their humility, for their understanding that they are not the doer. At the same time, this brokenness, this submission, allows the light to shine — bright and unhindered — right through them.

Look at Mother Theresa. As the “saint of the gutter,” she often performed the lowest of tasks. She couldn’t have done that if she wasn’t broken all the way through. Yet she could be fierce when necessary. She was one tough lady on a mission from God.

The way I see it, God breaks us in order to use us more completely. That’s why Mother Theresa, while being completely humble, was a force to be reckoned with.

Here’s one of the great things about having an autistic child: it breaks us. Not just once either, as it would if some horrific event occurred and then was over. It’s a daily, hourly, sometimes moment-by-moment breakage.

Just for a moment, imagine you’re in your soul-body looking at what you’d like to learn in your coming lifetime. Maybe it’s major doses of humility, surrender, and openness. But how to accomplish such amazing gains in one short lifetime?

“I’ve got an idea!” your guide says. “How about you have a child who relentlessly challenges you and requires constant looking after. A child who may always be a child, no matter how old s/he gets. A child who doesn’t understand social norms and so embarrasses you in public many times over. Can you imagine how much that would teach you?”

“Yeah, baby!” your soul-self says. “That’s what I’m talking about! ” And into this life you leap.

As hard as it is having this very different kid, my soul self is content. The desperate clawing — the wishing, hoping and praying that the situation was otherwise — marinates slowly with the balm of acceptance and surrender. Daily I am more broken and, when I am in the God Zone, I feel my heart getting more peaceful because of it.

Hinduism has a trinity God-head: Brahma, Vishnu and Shiva. Brahma is the creator of all of life. Vishnu preserves it, and Shiva? Well, Shiva is the destroyer.

You may ask, what is a destroyer — a God of death and destruction — doing among the top three Gods? Lord Shiva, you see, destroys all that is false within us. He destroys particularly the ego, which includes delusions, desires and attachments.

The energy of destruction associated with Lord Shiva has great purifying power. Destruction opens the path for a new creation, a new opportunity for beauty and truth.

So hip hip hooray for our autistic children who, by breaking us all the way through, destroy our false desires and illusions.

May we remember, now and then at least, that Lord Shiva’s dance of death and destruction represents the most essential goodness. May we remember, now and then, that powerful things are happening within us because of our journeys.

Lastly, may we open and surrender to that power of good — so that, as saints in the making, it may flow through us ever more freely.

Blessings.

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? 🙂