Living Bravely

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.

Secret Demon Thoughts

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

From Regress to Progress

Joseph got sick this past week: cough, fever, ear infections — the works. It started on Christmas evening, shortly after we’d gotten to a friend’s house for dinner. Joseph had a major meltdown, claiming he was sick and needing to go home.

Devoted mother that I am, I didn’t believe him. I thought, This kid has autism; he doesn’t like unfamiliar situations; he is just making excuses to get away. We sat for a long time in the sewing room, Joseph crying and pleading, me trying to get him out of his unhappy mood.

Eventually Blue Eyes came in and ended the stand-off, pointing out to me that, sick or not, Joseph was not in the space to be at a gathering. The family kindly packed us Christmas dinner to go, and home we went. Sigh. Merry Christmas.

We all regress somewhat when we’re sick, don’t you think? It sure happens in my family: Blue Eyes crawls into bed and doesn’t come out until he’s well, and I get mopey and weepy.

Joseph’s form of regression is different: he  retreats into more autistic behavior. We’ve seen this time and time again so it’s not frightening, but neither is it any fun. I’d forgotten what it was like to ask him questions multiple times, or to call his name, and not have him respond in any way. I’m so glad that phase is over in our non-sick lives.

Long before Joseph’s time, when my niece was 18 months old, she taught me to play the chase game. I imagine there is a variation of this game in every culture; in our case Madison would look invitingly at me over her shoulder and then start to run. When I took up the chase, chanting, “I’m gonna get you!” she’d run faster, almost falling over from giggling. I’d catch her and tickle her, and then we’d do it all over again. And again. And again.

I expected to have the same fun with Joseph but, alas, it didn’t happen. That laughing invitation, that teasing “come join me” look, is not exactly an autism staple. The autism attitude is more like, “Leave me alone; who needs you?” Autism touches every aspect of a person’s life, including play interaction.

Still, Joseph has, slowly but surely, started to understand the chase game. About six months ago he started chasing me in earnest (well, earnest fun), up the stairs, down the stairs, outside, inside, laughing all the way. He wasn’t so good about being chased, however: When I’d try, he’d run a short ways and then, no longer interested, stop. Game over.

We are enjoying amazingly warm, sunny weather for wintertime. After a week of sickness and regression, Joseph was finally well enough to get outside and enjoy it. We celebrated by going on one of our favorite hikes, through oaks and madrones, with river views and a waterfall as the final destination.

Joseph began the hike by saying, “Mom, chase me!” and running off ahead. Then he called, “Dad, you chase me, too. Both of you — chase me!” Blue Eyes took off after him, and for the first time Joseph ran from him, far and fast.  Then he called to us again. This time I caught up and tagged him. Without any clarification from me, he took off after me, running until I was tagged.

Oh joy. Parents, if this is something you take for granted around your child, please don’t. It’s someone wanting you to play with them and being able to communicate that fact, even persistently enough to bug you for it. It’s your child knowing how nice it is to share an experience rather than to go it alone. It’s someone understanding a pattern: run, get tagged, chase, tag.  In other words, it’s good stuff. Important stuff.

Ever since conquering the monkey bars we’ve been on an upswing. Oh, we’re still dealing with public screaming and various other autism unpleasantries, but in general the trend is our friend. Lots of good firsts happening.

Blaise Pascal said:

“Somewhere, something incredible is waiting to be known.”

This sums up how I’m feeling about this new phase. There are a bunch of little miracles happening, step by step. When I see  the laughing invitation in Joseph’s eyes, the reaching out for the company of his parents and friends, the willingness to stick with interactions and play more fully — oh! I feel that incredible something there, just waiting to be known.

What is that something? I think — no, I know — it’s more of Joseph. More of who he really is, when the autism isn’t in the way. More and more Joseph is emerging, unhindered. That, my friends, is my something incredible, and I will take it over anything else this old world has to offer.

The Quiet Flame

I’ll wager a guess that parents of typical children look forward to school Christmas concerts. Not us. Blue Eyes and I have been dreading this year’s concert ever since last year’s took place. We called our RDI Consultant, John, to talk about it:

YM: We’re worried about Joseph’s school concert. Last year, Joseph stood on stage and flapped his hands like a wild man. The other kids sang and did motions to the songs, and Joseph flapped. He never sang, not even once. He looked soooo autistic.

John: He IS autistic.

YM: I know, I know…

John: Tell me more about the flapping. Was he nervous up on stage?

YM: Not at all. He knew we didn’t want him to flap. He looked us in the eye, grinned a wicked grin, and started flapping.

John: Ah! So he was doing it to bother you guys. Sounds like a typical kid to me.

YM: We’re thinking to let him do the dress rehearsal and call it done. What do you think?

John: I say, don’t leave out this experience for Joseph just because you and Blue Eyes will be uncomfortable. Experiences like this are really valuable for him. If you guys can live with the discomfort, I think he should do it.

*****

Sigh. Sometimes you have to use the psychic Samurai sword to slash away your own wishes and do something for your kid’s growth.

We spoke to Joseph’s teacher about our concerns, and she got the whole music team on board to brainstorm. They ended up putting an egg shaker in his hand. At the concert on Tuesday night Joseph was busy keeping the beat, and sometimes he even sang. No flapping; not even one little wriggle of the hand.

Have you ever noticed that, if you’re willing to be uncomfortable, you will often be excused from the actual dreaded experience?

The concert was therefore, in our eyes, a huge success. And that wasn’t the only high note of the week.

Joseph has a crush on a girl in his class named Fiona. He sure knows how to pick ‘em — she is a cutie. On Monday Fiona came over for her first playdate.

When Joseph was maybe four years old and I was trying to interact with him, we’d play this game where he’d run into his room and slam the door shut. I’d bang on the door, protesting, and he’d laugh like crazy.

This was called “interaction” at that phase of his development. The trouble was, when potential friends came to play, Joseph would do the same thing to them, expecting them to come bang on the door. But, of course, no one ever knew they were supposed to do that. And Joseph wondered why they didn’t. It was puzzling on all sides.

I resigned myself a while ago to the fact that I might always be a part of Joseph’s playdates, because he may not be capable of coming up with things to do with a friend, or of even remembering to include the person in his activities.

It was different with Fiona. They ran down to the play structure and, well, played. After a while they came back for snack. Then they went into the hot tub and played some more. When it was time for Fiona to leave, she was sad. She’d had such a good time.

Playdate #2 took place on Wednesday and consisted of John’s two boys. John was blown away at how Joseph took the initiative, suggesting they kick a ball around together and then play some musical instruments. They went to a store together and Joseph clowned around trying to climb into a mini-refrigerator, to the amusement of some customers. John was overwhelmingly enthusiastic about Joseph’s progress.

Playdate #3 happened yesterday. Joseph got invited to Carl’s house. When I picked him up afterward Carl said, “It’s about time my best friend came over to play.”

Best friend??? Be still, my beating heart.

John has recently graduated a girl from the RDI program, pronouncing her recovered. She has friends seeking out her company. She is understanding subtle social nuances. This is a huge deal. Our regional agency, the one that funds interventions, told John that they’ve never had one of their kids come so far. They want to make this girl their poster child for what intervention can do.

I try not to fan it, but having had a week like this one, and hearing John’s enthusiasm for Joseph’s part in the play date, and knowing that it’s possible because it happened to someone else, the quiet flame in my heart that whispers, “Maybe Joseph could recover” is burning a little more brightly just now.

Sometimes I get a glimpse of what Joseph would be like fully recovered. He’s such a neat kid with autism that I can only imagine how amazing he’d be without it. With the ability to process more easily, to communicate more fully, to interact more deeply.

Trying to breathe and be present. To be okay no matter what. And, really, I am. But that doesn’t mean I don’t hope. Because I do.

Most of the time I’m not even aware of the quiet, hopeful flame in my heart anymore. But it burns steadily on, through rough times and regular times and amazing times, and I appreciate that.

May the flame in your heart, whatever it burns for, rise up and warm you during this holiday season.

Blessings.

The Way I’m Walking

I am walking to a more trustful place. A place where I don’t have to have it all planned out, don’t have to try so hard, don’t have to work on it so much. A place where life is easier because I trust that, in each moment, I will have what I need in that moment. Not what I need five minutes from now, but what I need now.

Trusting that, when I need guidance on something, like why Joseph is eating tissues (called PICA – the eating of non-foods – common in autism), I will get an answer. Maybe not the whole answer but definitely a first step, a direction – like calling our old naturopath, who’s moved out of town but who can possibly work with us long-distance or steer us to another doctor.

How do I know it’s right to reach out to the naturopath? Because after I did it, I felt sooo happy inside. Like those heavenly helpers who hover around sent a message of confirmation: Way to go, Yoga Mother. Thanks for listening!

If, indeed, I am so supported by the Universe, then it is a given that so is everyone else. This includes my friend’s grown son serving time for murder, and another friend who just crashed into a tree and has 16 broken ribs, and my father who recently died of Alzheimers — and of course, Joseph, who has autism.

Held, supported, loved, looked-after Joseph.

What if we could see them, these angels, these helpers. What if we could trust our hearts, which feel them when they’re open enough. What if we listened to those little whispers of love, of guidance, and felt their truth all the way to the core of our beings.

This is the way I’m walking.

To me, being present is acknowledging how much of life is beyond our senses. It’s getting a glimpse of how much more is going on than our minds can understand. It’s being open, listening, and trusting in all of that.

The path ain’t always gonna be pretty. The kid I expected – the one who was precocious and clever and talented and communicative – that one didn’t turn out to be my kid. The more I rue the past and rant and rage against what is, the more miserable I make myself. Really? Am I being clever and talented myself?

Done with that in this moment. Joseph is a gift. It all is, but Joseph’s the one with the huge bow on top.

This is the way I’m walking. A bit on the outside looking in still, but trying out a step or two and liking the way it feels.

Liking the way I feel when I turn more to God – turn it over to God. Liking the person I’m becoming when it’s less of me and more of God.

It can only happen in this moment. It can’t happen five minutes from now because that’s not where I am.  So here I am, present to the Presence, and filled to overflowing.

Blessings.

Telling Him

Joseph and I were having lunch the other day in a little cafe when the sweet face of a Downs Syndrome boy suddenly popped up at our table. This boy couldn’t speak too well but he obviously wanted to make friends with Joseph, and we had a delightful little interaction.

When he’d gone, Joseph said, “That’s James from my summer program!” I figured it couldn’t be, because this kid seemed a few years younger, but I checked it out with his mom and confirmed that he was not James.

Later on, I told Joseph that the reason this boy looked like James was because they both were born with something called Downs Syndrome, and I explained a little bit about what that meant.

I intentionally have conversations like this with Joseph from time to time, because, brick by brick, I’m laying down a foundation. We’ve talked about people who have no arms and who have learned to use their feet to eat, paint and play with toys. We saw a cognitively-challenged girl not long ago, and I used the occasion to talk about people who move and think  differently from the rest of us. Not that they’re any less than the rest of us — just that God’s given them a special role to play.

I go through life with a Special Needs lens on. I notice people with special needs so much more now than I used to, and the truth is I take more delight in them than I used to. I admire these souls who have come in with such courage, daring to be different in a society with major conformity issues. I am at ease with them even if they’re “deformed”, using a breathing tube in a wheelchair. This is just another gift that Joseph has given me.

Maybe one day Blues Eyes and I will tell Joseph that he, too, thinks differently from most people. That God gave him a special way of looking at life and that we earthbound people call it autism.I’d expected to tell him long before now, but it’s simply never come up.

Why hasn’t it come up? It’s said that when we’re very young we form impressions about who we are and the world around us. From then on, we unconsciously accumulate evidence to confirm our impressions.

For example: Remember my last post, where I couldn’t grasp how to tie a certain knot and was secretly convinced that I was handicapped? I was in the mentally gifted program at school; I got lots of accolades for being smart. And yet there I was, unable to do this knot and convinced it meant I was slow, stupid, mentally damaged. Because I had severe low self-esteem as a child, I attached myself to the external evidence that matched my internal conditions.

I can only gather, therefore, that Joseph does not have the internal condition of being different in a bad way from others. He has never asked us why other kids are okay in noisy crowds and he’s not. He’s never asked why he flaps his hands when none of the other kids do. He simply accepts himself as he is, without a lot of mental accusations.

This is great! And it may not last forever. Quite possibly, as Joseph gets older and awareness increases on both his part and in the kids around him, he’ll be told, or he’ll see for himself, that he is different. The experts say that this often occurs in 4th grade — as, not coincidentally, does an increase in the autistic child’s level of anxiety and depression.

That will be the time to have the autism talk.

What will we say? I’ve thought about this through the years, and I still don’t have a hard and fast answer. Something about how his brain is wired a little differently than most people. That this wiring makes it harder to understand social cues. That he has an extra sensitivity to noise and overstimulation than do most of us.

But just as I make it a point to talk about how all of us have certain gifts, I will do the same with autism. Sensitive people are the poets, the artists, of our world. Different people think outside the box and therefore can come up with ideas and solutions that would never occur to the rest of us (Bill Gates, for example). I collect articles about autistic people and how they’ve turned their challenges into gifts — and I will present these to him.

Hopefully Joseph will take the understanding of autism not as a reason to limit himself, but as a way to understand himself better and take advantage of his strengths.

When the time comes to talk about autism with Joseph, I pray for the wisdom to present it to him in a way that helps without hindering, that expands awareness without labeling.

I also have a prayer for myself. I pray that I see Joseph as an amazing soul who happens to have autism. I pray to remember that this soul chose autism as a way to help himself and many others, including me — definitely including me! — to grow.

The Butterfly

He’d been watching them closely, like he watched most people. Standing just beyond the quickly-flowing current, he’d observed the kids on the play structure. Climbing up ladders, sailing down slides, zipping across the shaky bridge, gliding down the pole. Finishing on one side and running around to the other to do it all again.

Mostly he watched the kids on the monkey bars. Day after day they’d climb the steps, grab ahold of the first one and then, bar by bar, swing their way easily to the other side. ‘Most every kid who tried was able to do it – and anyone who couldn’t simply dropped to the ground and ran to the other end to start over again.

He watched them all.

He had the idea to go down on a Saturday, when none of the other kids would be there. It was true: when they got there, it was just him, Mom and Dad. Well, over on the grass there was a man playing fetch with his dog, but that was far away.

He climbed the steps. He looked at the bars. They were high up, and there were a lot of them. He remembered the ease with which the other kids played on them. In his mind’s eye he saw the ones who’d gone across yesterday, at recess: Leah, Anthony, Jacob, Casey…

They were made of metal. The silvery steel reflected the sunlight. The birds chirped over by the trees, and the breeze blew softly on his skin. Above him the clouds floated across the sky. His parents stood a distance away, speaking quietly to each other.

Ever so slowly, he reached his arms upward. His hands opened, a new butterfly trying out its wings, and wrapped themselves tentatively around the first bar.

*          *          *

I wrote the above essay when Joseph started kindergarten two years ago. The intensity with which Joseph watched the kids on the monkey bars, and the need to try it only when he felt completely safe, really struck me.

For two years now, Joseph’s had a challenging relationship with the monkey bars. That first day he simply put his hands on the bar, but, slowly, he’s gone a little further. For about a year he’d put both hands on a bar and call it done. Then he began holding the bar, stepping off the ladder, hanging for a bit and dropping down. He continued to do this while kids years younger than him swung across with ease.

Here are two things I so admire about Joseph: he never gave up and he never got down on himself. If I’d been in his position, it would be a foregone conclusion that, if so many peers and kids younger than me could do it and I couldn’t, there must be something wrong with me. When I was in Girl Scouts we learned to sew, and there was one knot I just couldn’t grasp. In the Girl Scout handbook it said, Note: Handicapped children may not be able to learn this knot. Therefore, I was secretly convinced that I was handicapped. It took me years to get over that one.

Not my Joseph. Butterflies don’t get weighed down by much.

Yesterday the butterfly flew. He made it across those monkey bars, and back, and across and back, and across and back, a hundred times.

It seemed like he’d always been able to do it. And just as it wasn’t a big deal to him when he couldn’t do the monkey bars, it is also not a big deal that now he can. It’s fun and it’s great, and he called Blue Eyes to announce the fact, but it doesn’t define him as a person.

Wow. What a lesson for people like me. I mean, butterflies don’t think they’re worms because they haven’t yet flown. They stay present. They enjoy the breeze flowing by; they practice moving their wings. When the time is right, and only when the time is right, they lift off.

To every thing there is a season, and a time to every purpose under heaven.

Almost makes you trust, doesn’t it?

Bullies, Fear, the Present and God

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?

Weird

I had a Skype session yesterday with John, our RDI consultant. I took notes as he spoke about the playdates Joseph’s been participating in. Somehow the subject of weirdness came up, so I jumped in with something that’s been bothering me lately:

Joseph likes to be weird.

Howling on the playground

We’ll be walking up to his classroom in the morning, students of all ages around us hurrying along, and Joseph will suddenly stop, look up at a pretend moon, and howl.

At full volume.

Kids turn and look.

I’ll whisper, “Joseph! If you do things like that, the kids will think you’re weird. They won’t want to be your friend!”

Joseph will laugh delightedly and repeat, sing-song like, “I’m weird. I’m weird.”

John listens to my concern, his face imperturbable. Then he tells me that, when it’s a full moon, he goes into his backyard and howls at it. John lives in a suburban neighborhood, and all his neighbors recognize his howls. His wife hates it, his children love it, and every full moon he does it.

Joseph is just weird, he tells me. He sees him growing into a teenager who is funny and smart, who can be really goofy with his friends.

All along I thought this was autism. This ability to happily be different from other people — to try, even, to get them to think he’s weird. John’ says it’s not autism. It’s Joseph’s personality — autism or not.

This is just another reason that I love RDI. Having someone to check in with on the little things and the big things. Getting an expert’s perspective — especially an expert who knows our boy, and our family, really well.

Not just any expert, either. An expert on RDI, which stands for Relationships Development Intervention, and which focuses on development in dynamic real life — not in some contrived, forced situation, like another popular intervention.

For years I’ve been coveting the RDI stage where Joseph could be in a dyad, playing with another child under John’s tutelage. We had to get all the necessary developmental skills in place before Joseph could qualify — how do you play with another person if you don’t understand how to co-coordinate an activity, for instance — and now we’re finally there! There are many stages to a dyad, and John is positive about how well Joseph is progressing through them.

Some people take their kid off of gluten and the autism goes away. Some people use homeopathy, or glutathione shots, or oxygen chambers, or another of the million and one cures for autism — and suddenly they have a neurotypical kid. That hasn’t been our path. A lot of the things we’ve tried have helped to some extent, but on our long, slow route to helping Joseph achieve his full potential, RDI stands head and shoulders above the rest.

The closest analogy I can give for RDI is Annie Sullivan, Helen Keller’s teacher.  Like Annie, RDI comes right into your life, reaches into a child’s isolated world and gives him/her meaning, connection, and a way to grow.

To stretch this analogy just a little further, RDI actually coaches parents into being their child’s Annie Sullivan. The intervention is parent-based because the parent-child relationship is, or should be, the strongest relationship there is.

This can be frustrating. In many ways I would  prefer to let our RDI consultant, John, do the Annie Sullivan thing. The ego wants the easy way out, after all.

But the soul seeks to grow. Despite all the hard work and the many times I want to give up, I am coming to understand much from RDI about autism and how to help Joseph with his particular challenges. For this I am eternally grateful.

mud hat

I love that John thinks about the teenager Joseph will grow to be. That he sees him having friends in this future time. He coaches us to raise Joseph to be a good husband someday, and I love that he doesn’t limit Joseph from friends and marriage because of autism.

I’m starting to delight in my son’s weirdness. It’s an ability to think and behave outside the box. It’s creative and silly and fun. Like John, I’m enlarging my vision to see Joseph’s future friends admiring his weirdness, enjoying being crazy and funny together. And maybe, further out, a wife and children with whom he can be his own howling self.

The Question Mark

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.

Autism and Marriage

Blue Eyes and I met on a group pilgrimage in India. That first meeting, we sat in the hotel lobby and talked for many hours, late into the night. Though our bodies were sitting sedately on couches talking away, I had the sense that our souls were above us, dancing in the delight of their reunion.

This year we celebrated 20 years of marriage. It’s been a great marriage. For a long time we were confused about whether or not to add a child to the mix but, 13 years into our marriage, the Universe made up our minds for us.

Anyone involved in the world of autism has heard the statistic that 80% of all autism marriages fail. It’s the same difficult odds, I might add, when a child dies.

Maybe it’s not actual death, but having an autistic child is like a death. The death of dreams, of plans, of what you thought the parenting journey would be, of what you thought your marriage would be. The death of your life as you knew it.

In many marriages, autism produces a long, slow spiral downward. Truly, I can see why. The isolation of having a kid who cannot cope being with other people, the stress of having to figure out how to deal with autism, the major financial stress of medical and behavioral interventions.

I am fortunate to live in an area that had a support group for parents of young ASD children. Most of us were dealing with the above stresses and the co-occuring problems of autism, as well. Sleep, for example, was a huge issue. There were five core moms in this group, and we discovered that most of us weren’t sleeping with our husbands. For one reason or another — a mom’s fragility sleeping because of stress, a child who wouldn’t sleep through the night without a grownup with him, a parent’s inability to cope with a child’s frequent wakings — long-term sleeping separations were taking place.

This is hard. In my marriage, holding each other before or during sleep is a wonderful, and important, way to connect after a busy day apart. And, of course, when you’re not sleeping in the same bed, sex pretty much flies out the window. There goes another significant connecting point.

If you’re in a marriage and have had a recent autism diagnosis, here is my advice: Get help. Get help, get help, get help.

Part of our autism “benefits package” included eight sessions of marriage counseling. The strain didn’t go away with eight sessions, so we were granted an emergency package of eight more sessions. What a gift this was. All conflict is an effort to birth something new, and during these sessions we worked to birth a new marriage. The counseling sessions were a great start, and it still took us a long time to figure out how to be married in a way that could work with autism.

It’s like this: the chronic stress that raising a child with autism entails affects your marriage at its weakest points. So you either strengthen your weakest points, or you die.

We had to learn how to have fun again. Since we couldn’t have fun within the family (at that time, Joseph was way too challenging to be fun), Blue Eyes and I needed to go off by ourselves. This meant finding someone who could look after an autistic child. For many families, trying to find this person is huge. Few outsiders can deal with autism and the way it presents itself. We ended up hiring one of Joseph’s behavioral-intervention tutors for occasional babysitting. Karen has become a great friend who still looks after Joseph several times a month.

We also needed to nurture our own souls. Joseph was a two-parent project for a long time, but we eventually got to where one parent could go to a yoga class or group meditation while the other held down the home front.

Lastly, we stopped taking it out on each other. We slowly stopped snapping at each other and rolling our eyes at the other’s viewpoint, and learned instead how to support each other — how to be friends sharing this burden instead of struggling individually with it. A burden shared is a burden halved, right?

At this point, we are heaving big exhalations and feeling that autism is not going to be the end of us. We are treasuring each other and enjoying our family. It helps that Joseph has improved so much.

The longer I’m married, the more I realize that marriage is not a destination. It’s a journey. We are not at happily ever after, but we are at happy. After all we’ve been through, happy is a terrific place to be. I am grateful.

Are our souls still dancing in the delight of being together? I think so. All the more because, so far at least, our marriage has made it through the fiery trial of autism.

Productive Uncertainty

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.

Play Ball!

It’s called a spectrum because it is just that — a spectrum of autism, which presents differently for each child.

One way Joseph presents is with very little interest in very many things. It’s hard to engage with him in an activity, simply because he doesn’t care about it. It’s challenging, not just for Blue Eyes and me, but also for Joseph’s teachers, peers, respite workers, and RDI consultant.

When Joseph started first grade this year, we worried about recess. Whatever would Joseph do out there on the blacktop if he doesn’t care to play ball or play chase or engage in the myriad of other games that kids so easily play?

But behold, a miracle hath taken place on the blacktop. A couple of weeks ago, Joseph got in line to throw a ball at the basketball hoop. The next day, he secured a basketball and started throwing one at his own hoop. Then he shared the ball with another kid and they took turns doing it.

Joseph came home talking about basketball. A few days later, Blue  Eyes and Joseph came home with a basketball hoop, and they spent hours assembling it. Together. It was the first time Blue Eyes had ever seen Joseph stay attentive to a task for such a long time — and perhaps it’s the first time it ever happened.

Joseph allowed Blue Eyes to show him how to do things, like turn screws, and then he did it himself. This is a very basic skill: being an apprentice to someone. Blue Eyes has mourned that he and Joseph haven’t had this relationship.

When the thing was standing upright — oh my, that’s when the fun began. All of a sudden we had something enjoyable that we could do with him. Joseph said, “I want to play basketball. C’mon, Dad! C’mon, Mom!” And away we went.

So very many other things have been about dragging a reluctant kid into an activity: board games, kicking a ball around, playing catch, shooting water guns, going for walks, listening to music, watching a movie, going on adventures…Shall I continue, or have I made my point?

Yesterday I met with John from RDI, and spoke to him about the new development. He handed me the ball and showed me many ways that I can utilize RDI interventions as Joseph and I play. If I want to pass the ball to Joseph, for example, I don’t throw it to him right where he is. I look to another point and gesture there with the ball. Joseph needs to read my facial expressions and gestures to know where to go. It’s brilliant.

As it turns out, there is a basketball team for special needs kids locally. Joseph works hard all day with typically-functioning kids, and I think it’d be great for him to be with his tribe on a regular basis. It ranges from almost typical kids to severely impaired, and the kids are all very kind with each other. Come the new year, we’ll be there.

It’s a small thing, playing basketball, but it’s a giant leap for our family. When you deal with autism, a little thing like this can go a long, long way.

The Eye of the Beholder

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

*               *               *

Thank you, Melinda.

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

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

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

What’s Left Out

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

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

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

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

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

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

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

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

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

Another thing left out.

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

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

Another thing left out.

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

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

Another thing left out.

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

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

Sigh. Another thing left out.

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

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

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

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

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

The Perfection of a Bloody Nose

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.

Conversations with Satan

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.

Dips, Surges and the Path to God

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

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

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

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

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

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

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

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

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

And then it happened:

Everyone Looked.

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

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

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

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

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

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

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

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

Life is good. Life is definitely good.

Yearning

yearn·ing

[yur-ning]

noun 1. deep longing, especially when accompanied by sadness

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

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

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

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

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

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

Geez. What a messed-up world.

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

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

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

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

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

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

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

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

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

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

Yearning. Just yearning.

Vrittis

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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