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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.

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One of the trippy things about having a kid with autism is that, unless your kid happens to be displaying autistic symptoms right at that moment, s/he looks pretty normal. This is why having to take my ten year-old, normal-looking son into the ladies’ bathroom is an excruciating process for me.

It’ll be like this: we’re out and about, miles from home, and Joseph or I needs to use the bathroom. So far so good, right? We walk to the facilities and, naturally, they are separated into men’s bathrooms and ladies’ bathrooms.

(Allow me a slight digression. In Australia, they are labeled “Male Toilets” and “Female Toilets.” I always wondered, how do they know the gender of a TOILET? But, as I say, I digress.)

This is where we run into trouble. As usual I will say, “Do you want to try the men’s?” And as usual, Joseph, filled with anxiety, will answer with a resounding “NO!”

Still, every now and then he will actually open the door and stick his head in. Then he’ll pull his head out and say, loudly enough for the poor, innocent man to hear, “I can’t go in there. There’s a MAN in there!” Or he’ll just say, “I can’t! I’m too scared!”

And so, here we go again. Into the ladies’ bathroom, me and my ten year-old, normal-looking son.

Now, Joseph knows full well that it’s weird for him to be in the ladies’ bathroom. Believe me, I’ve tried to shame him out of the practice any number of times. But instead he hurries into the bathroom, rushes into a stall, closes the door, and asks loudly, “Mom! Where are you?”

Once he’s figured out that I am close by he continues his interrogation. “What are you doing, Mom?” “When will you be done?” “Aren’t you done YET, Mom?” Then, just for a little extra entertainment, he’ll start in with, “Mom, there’s another woman in this bathroom! Help me, Mom! Help me!” (This latter statement is because he’s embarrassed to be in there — thanks to me — and doesn’t quite know what to do once more women arrive.)

The good news is, once Joseph starts acting like this, people quickly figure out he’s got a disability and I can show my face again without being embarrassed. So, see? It all works out. Ha ha.

You could say that it’s yet another thing I need to surrender to. You could point out that it’s the practice of building humility through humiliation. But please don’t. I’m just not in the mood to see the longer-rhythm good that could come out of this.

bathroom signWe are on vacation in Oregon. Beyond the horrid days like the one I outlined in my last post, we’ve been truly enjoying ourselves. And THIS is a sign I saw outside an Oregon bathroom at a campground.

Glory be! I LOVE this sign. I want this sign on every public bathroom from here to Timbuktu.

But until that happens, can you do me a favor? If you see some normal-looking kid in the wrong gender bathroom with his/her parent, just smile pleasantly and look the other way. It’s not nearly as bad for you as it is for that parent. You can trust me on that.

I teach yoga for the staff at Joseph’s school, and one of the regulars is his special ed teacher, Dana. Usually we focus on yoga but, every now and then, she’ll share with me a tidbit about Joseph when class is over. Last week, for instance, she wanted to tell me about the “miracle” that happened.

For months Dana has tried to get Joseph to leave his session with her and walk into the cafeteria (for lunch) by himself. Now, the cafeteria is a challenge unto itself, being noisy, crowded and somewhat unstructured, but the big deal was that he’s always refused to go in without his aide. On the day of the miracle, Joseph walked over, found a friend, and went into the cafeteria with him. And he’s been doing it ever since.

Wonder of wonders, miracle of miracles!

Another one: This morning I walked Joseph to his classroom. Never, ever in the past has he allowed me to leave before his aide shows up, but today he let me kiss him and go. Wow! On my way back to the car I saw his aide coming up, and I excitedly told her what happened. “Yup,” she replied. “Takes about 100 repetitions and then he can do something.”

I laughed. “Blue Eyes and I say it takes 500!”

Repetitions. What a great way to learn patience. What a marvelous way for my character to be formed. What great sandpaper for my rough spots.

Will it ever end????

Sigh…probably not. And it gets more complicated. Now we are endeavoring to teach him to speak to us with respect, to clean up after himself without being reminded…that sort of thing. It feels endless. Maybe it is. Maybe every parent feels this way. Maybe I’m going to set myself on fire.

sugarEaster was full of sugar, and right afterward we took a week’s vacation. Think ice creams and other sweet things — the kind of thing you do when you’re on vacation.

Trouble is, by the time we got home, we saw that candida had taken over Joseph. He was spacey, stimmy, tantrummy, and an overall pain in the butt. We put him on a sugar-free cleanse, which has been devastating for him. Almost every morning he wakes up and starts an argument with me. When can I have sugar? Can I have it if we go to the lake in the summer time? Can I have it on June 6th, the last day of school? Can I have a soda the next time I go to a restaurant?

It’s relentless. I am trying to do my Love and Logic — I love you too much to argue — and leaving the room, but this kid will not let it go. It’s a major struggle.

Our Love and Logic Instructor once wrote on the whiteboard four big letters:

C
T
F
D

 

Calm The F*** Down.

i pray for long-term perspective. For more patience during these phases that require so much repetition. I pray to remember that things take longer with Joseph, and that I need to take care of myself in order to deal with his special needs. Last, but definitely not least, I pray  to CTFD in those trying times.

Joseph started a social skills group last week. We are calling it a playgroup but nonetheless it is a social skills group, led by a Speech Therapist named Daphne.

Joseph has been having some trouble parting from me when it’s time to go to school. It had become something of an issue, even bringing me to tears as he would cling to me outside his classroom, crying and pleading with me not to go. Picture the anxious kindergartener clinging to their parent on the first day of school, and you’ll get the picture. Except that Joseph is in third grade and it’s been happening every day this year.

This shifted recently, and the only things I can credit that to are time and the fact that I shifted, as well. I decided not to get anxious when Joseph got anxious, but to calmly kiss him, tell him I loved him and I’d see him later, and leave. This actually made a big difference, and I’ve been feeling really good about it.

So. We go to the social skills group for the first time. It’s just Joseph, Daphne, a boy named Luke, and a teenage helper. Luke’s mom stays in the waiting area, which is a very short walk from where the kids are meeting.

Joseph, however, will have none of that. I have to walk over to the room with him, which I do. Then I try my kiss-and-go approach, with the reassurance that I’ll be right in the waiting room.

Joseph will have none of that, either. Clinging, crying, embarrassed but determined, he says, “Don’t go, Mom! Don’t go! Don’t leave me!”

windowI don’t want to stay in the room with the group, so Joseph comes up with a plan: I am to sit outside the room in the hallway, facing a window that has the blinds drawn, so that he can occasionally pull the blinds aside and make sure I’m still there.

Sigh. I pull up a chair and sit in the hallway. I listen to the muffled sounds inside the room. I can’t see anything around the blinds. I am very thirsty but I don’t dare walk to the lobby for some water, in case he looks out and I am gone. I have no book, nothing to do but stare at the window for the next hour.

So I sit there and contemplate the fact of suffering.

Suffering, Gangaji says, comes from an idea we hold of being a victim. Whether it’s God we hold accountable, or circumstances, other people, ourselves or whatever, we have the idea that we’ve been wronged. Whenever we remember the wrong/s, there is thought, emotion, and momentum around it. What would happen, she asks, if we just let it go. Yes, we’ve been wronged — sometimes terribly so — but maybe it’s time to stop punishing the tormenters, even if they don’t deserve it!  She invites us to experience putting an end to victimhood and feeling joy instead of suffering, just for a change. That way, she says, if we want to go back to suffering, at least it’s a conscious choice.

So, the window seems to ask me, what’s it gonna be? Is this an hour of suffering or a chance to relax with me and enjoy some quiet contemplation?

It is tempting to feel wronged. Wronged by autism and wronged by an anxious kid who makes me sit and stare at a window for way too long. But I kind of choose the latter. I mean, it wasn’t too bad, really, sitting there for an hour. Eventually I even got someone down the hallway to bring me a glass of water.

What I’m saying is, I’m really looking at suffering and victimhood. I know that if I can work with my inner narrative, then no matter what is happening externally, I can be content. Yoga is all about living from the inside out, rather than the outside in.

It’s a funny thing, listening to Gangaji. The people who come up to speak with her are often full of suffering. They have stories of great sorrow, or mighty struggles going on in their lives. But by the end of their talk, they almost always end up laughing. Really laughing, I mean. Like they see it’s actually hilarious. Like they finally are in on the joke, and what a joke it is.

I fully expect to be staring at that window again this week. But this time I’m coming prepared. I’m bringing water, a book, and even more conscious choice. I want to laugh hilariously! I want to put an end to feeling like a victim and embrace the joy beyond the story. It is a great story — and what would I post about without great stories? — but, like the lady says, how wonderful to be conscious about whether or not one buys into the suffering.

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

Then he made his prediction about Blue Eyes.

He said that some scheming bitch would get him.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

It’s been a deep sorrow for me that Joseph and I don’t have real conversation. My questions are often ignored or answered as if I’d asked something else entirely. If I try to engage him in a conversation, I’ll usually get one- or two-word responses.  Fragments come out, or words out of order. I get confused as to what he’s trying to say.

Sometimes, frustrated, Joseph will burst out with, “Don’t talk to me! I don’t want to talk!” Having a mind that can’t organize words or concepts must make verbal self-expression very challenging.

A few years ago I brought up to John, our RDI Consultant, my sadness about the lack of conversation with Joseph. It’s another autism-based missed opportunity, I’ve felt — the chance to engage our hearts and minds via our words.

But John has told me that RDI addresses the conversational deficit. And guess what? At last, at last, we  have a strong enough foundation to get to work on it.

To start with, I’m not to ask Joseph those open-ended questions that parents are supposed to ask their children (have I mentioned that autism parenting is counter-intuitive?). Right now it’s too confusing for Joseph. I’m to ask more specific questions. Instead of, “What did you do at school today?” I ask, “Did you play on the blacktop or the playground today?” “What did you do there?” “Why?”

I’m to ask who, what, where, when and why questions. Not all at once. Not overwhelmingly so. Just enough to get Joseph used to the different ingredients of basic conversation.

This afternoon Blue Eyes asked Joseph, “Where did you just come from?” Joseph answered, “John’s house.” “What did you do there?” “We went swimming.” We are focusing on this sort of thing — Joseph does something and then reports on it in a way that is clear and understandable. We guide him with the basic ingredients of conversation.

Coincidentally (or not?), Joseph has recently gotten into telling stories — either made-up ones or stories from Blue Eyes’ and my childhood. It’s the perfect time to exercise the who-what-where-when-why concepts. If Joseph jumps in on a story without setting it up properly, I look confused. “Wait a minute. Who was this? Where were they?” Joseph has to backtrack and fill me in on the basics before continuing.

It’s exciting. I’m already seeing progress. My long-held dream of conversing deeply with my son is moving in the right direction. And the great thing is, Joseph doesn’t even know we’re working on this. It is happening for him in what appears to be a natural manner.

RDI is getting a lot of flak from our local funding agency. They lean toward Applied Behavioral Analysis, which works with kids in a much more rote way. The thing is, life is dynamic and ever changing, and learning rote ways of thinking, talking and behaving are not going to serve these kids in the long run. When I see Joseph getting along in his mainstream classroom — when I see his friends including him in their activities, even seeking him out — I am filled with admiration for my son and for the intervention that is making such a difference in his life.

Where autism is concerned, there is no such thing as small talk. Small talk is big talk, and big talk is even bigger talk.

I could say a lot more on this, but for now I (who) am signing off (what). It’s late (when) and I’m tired because it’s been a long day (why). Off to bed (where) with me.

Nice talkin’ to ya.

Joseph came home from school today and marched right upstairs to his room. “Do NOT come into my room, Mom!” he instructed me — several times over the next hour. I could hear him in there playing with his trains, which we hadn’t gotten around to putting away Sunday evening. Toy trains, being something of an obsession, are usually restricted items, so naturally it was exciting to Joseph to enjoy some forbidden fruit.

When an autistic child tells you to leave them alone, it can produce a perplexing amount of emotions. I went back to the educators who came to our house for a first look at Joseph at age two, when we initially suspected autism. When they left, they instructed us to stay in his face — to not allow him to retreat into his own world. No private time, they told us. And I remembered how Temple Grandin’s mother would let her stim (in this case, I believe it was flap her hands) for only half an hour after school before hauling her out and putting her to work, learning and interacting.

I am an introvert. How I prize my alone time, my quiet time. If I don’t get it for a while, I have a melt-down; I really do. I believe that Joseph has at least the same need  for space — if not more.

This was one of those times when I wanted the manual. You know the one: It’s entitled How to Work with your Autistic Child for Their Maximum Benefit.

Joseph’s gone in and out of train obsession since he was two. It used to freak me out, as it was all he’d think about, talk about, watch on video, and play with. That’s why we ended up restricting toy train time.

This time it’s slightly different. Though he’s thinking about trains and talking about them a lot, he’s engaged in other parts of life, as well. He’s goofing around with our dog and he’s wanting to go swimming and he’s excited about an upcoming vacation.

Still, trains rule all as his Number One Love.

We have a friend, a guy in his 50s, who loves trains like that. He had an extra room built on his house which he filled with model train tracks and trains. On weekends his buddies come over and they run trains together. He goes to train shows and train exhibits. His wife comes along sometimes; she thinks it’s funny.

Joseph will be like this man. There is just something about trains that he adores. It will be a lifelong passion. It’s not the way I choose to spend my life,  but it is his life, not mine. I can live with that.

Joseph is not figure-outable right now. In some ways he seems to be regressing: train obsession, more jerky movements than usual, more flapping. In other ways he seems to be progressing: finally enjoying board games, understanding his math, conversing a little better. Maybe this is a healing regression. Maybe not. I’m tired of trying to figure it out.

I don’t have the manual, so I think I’ll just release it and leave God’s business to God.

I’m even going to give myself some slack for not hauling Joseph out of his room and making him interact with me this afternoon. Sometimes you’ve got to put aside the (imagined) manual and go with your gut. My gut said, leave him be — though I did have him put away the trains this evening.

When you have a kid with autism, you can drive yourself crazy really easily. I never should have taken him to that noisy concert when he was a baby; I should have had him diagnosed earlier; I shouldn’t have done vaccinations; I should never let him have too much alone time.

But there is no manual, and much of Joseph’s, and perhaps anyone’s, autism is simply not figure-outable. Because of this, I try hard not to should on myself. Part of the divine perfection of this journey is that I’m learning to release things more easily rather than to flog myself with them repeatedly.

All this to say, Joseph and I had a lovely, quiet afternoon. We came together at times but also spent a lot of time apart doing our own thing.

And God said, It was good.

Or, at the very least, I did.

🙂

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

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

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

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

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

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

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

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

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

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

God, are you really here with me?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

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.

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.

yearn·ing

[yur-ning]

noun 1. deep longing, especially when accompanied by sadness

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

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

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

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

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

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

Geez. What a messed-up world.

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

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

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

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

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

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

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

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

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

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

Yearning. Just yearning.

I’ve spent nearly all of my life feeling unsupported. My family of origin was big into unspoken pretense: If you pretended all was well — if you avoided the underbelly of yucky, really awful stuff — then you’d get by.

But if you’re completely invested in this kind of pretense, then you never learn to ask for help. You’re too busy pretending you don’t need it.

For decades I had a recurring theme in my dreams. I was being chased by some unknown, but very scary, creatures. I’d make it to a phone booth, pick up the phone, dial 911, wait breathlessly for them to pick up — and they never did. Or I’d see some people and I’d open my mouth to scream, “HELP! HELP!” but I couldn’t get the words out of my mouth. Never did I get the help I needed. It was terrifying. I felt so helpless.

When Joseph was diagnosed with autism, I followed the family pattern. I isolated. We told almost no one for a long time, and even when we told our families, we didn’t tell them what a nightmarish time we were having of it. We didn’t ask for help when we really, really could have used some.

This is one of the things I know this amazing soul has come to teach me. With Joseph as my son, I have to show my vulnerable underbelly a lot more than I want to.

We go to a church. Yes, I am a yogi, but I am a Christian yogi. A couple of years ago we stopped in at a church for Christmas carols. Joseph insisted that we go back again — and again, and again — and, before you know it, we were enjoying ourselves and getting some deep insights from the pastor who, like us, has been broken open by pain.

Yesterday there was a new teacher named Carol volunteering at Joseph’s Sunday School. It turned out that her son goes to the same small, country public school that Joseph attends, and we saw her there today. Carol asked if there was anything she could do for Joseph at church when the music gets loud — she noticed that he covered his ears when that happened.

Carol was presenting us with an opening, giving us a choice we’ve encountered many times:

To tell or not to tell.

Oftentimes in the past I would have chosen Door Number Two, but I’ve been worked over so much now that it’s easy to choose Door Number One. I told her that Joseph has high-functioning autism. She’d already guessed that, but telling her immediately shifted the depth of our conversation. She shared about her friend’s son’s autism, about her own child’s anxiety, and ended by inviting us to have Joseph and her boys share ice cream together sometime soon. None of that would have happened if I’d stuck to my old habit of pretense.

It was a good start to Joseph’s first day in first grade. What also made it good was the principal coming to tell Blue Eyes and me that they’d interviewed 25 people and had found the person they felt would be perfect as an aid to Joseph. They’d selected very carefully, he said, because Joseph is an awesome kid and they wanted him to be set up for success. Joseph’s teacher came over to tell us she was including a journal in his backpack to keep the channels of communication wide open between the three of us and that she was excited to have Joseph in her class. And she meant it.

I walked away from that school feeling held. Carried. Supported. I guess Joseph isn’t just my and Blue Eye’s project. Joseph has always had the good karma of drawing together a caring community that holds him lovingly. And when I’m honest and vulnerable I get held by them, as well.

They say autistic kids at some point choose whether or not to let people into their lives. I’m coming to realize that this is not just an autistic person’s choice. That fork in the road is constantly before us. I thank this son of mine for helping me to choose the path that lets people in — more deeply than ever before.

It’s incredibly nice to dial 911 and have someone answer the call.

Pick something really terrifying to you: maybe a zombie, a vampire or a monster. Let’s say that, just about everywhere you go, you see one or two of these horrifying creatures. And then sometimes you go somewhere, like to a beach or a park, where there are unexpectedly hordes of them  running around freely.

Wouldn’t life be one terror after another? Can you imagine how drained your adrenals would be from your constant flight-or-fight condition? How exhausted you would be from constantly fearing for your life?

This is, I believe, how life used to be for Joseph. But it wasn’t zombies, vampires or even monsters. It was — sigh — dogs. Large dogs, small dogs, quiet dogs, barking dogs, friendly dogs, growling dogs — they were all equally alarming. We couldn’t go places because a dog might be there. One birthday party last year included two small dogs and a child (mine) who spent the party sobbing in fright.

Blue Eyes and I really despaired around this one. It’s amazing how often we’d see zombies — er, dogs: outside grocery stores, on playgrounds, in the backs of trucks in parking lots. The world was one big mass of terror for Joseph, and, as far as we could tell, it always would be.

Then the world cracked. Joseph’s friend, Brendon, got a puppy. His mom and I discussed worriedly what this would do to their friendship — and, indeed, when the puppy arrived Joseph told us he never wanted to go to Brendon’s house again.

We handled this the way any good parent handles a situation: we used bribery. Joseph wanted something really badly, and we told him he could only have it if he walked into Brendon’s house and looked over the doggie gate at the puppy. The next time we visited, he had to touch the puppy. This involved some strong persuasion and some tears, but from then on the whole thing got easier.

Then Joseph started saying he wanted his own dog. We could hardly believe our ears.

But I took him at his word, and once a week we would stop at the local animal shelter. It took months to get Joseph to even enter the dog department, but eventually we got there. And one day he was there: a Chihuahua-Pomeranian-dachshund mix, small enough to not intimidate Joseph and house-trained enough to be acceptable to me.

Joseph spent the first couple of weeks avoiding Raj. His big fear was that Raj might jump on him. Then, one day, Joseph didn’t get away fast enough, and it happened. Raj jumped up on him and then he jumped down — all in a flash.

Joseph’s eyes widened. His jaw dropped. He looked at me and said, “He jumped on me!” I answered, ‘I know. How did it feel?” Surprised, Joseph said, “Good!” I spotlighted that moment for the next couple of days, reminding him that it had, after all that fear, been a pleasant thing to have Raj jump up.

It’s all been uphill since then. In the four months he’s been with us, little Raj has brought about amazing changes in our lives. Joseph is completely unafraid of dogs now. We are gathering that fear must beget fear because, as the dog terrors are disappearing, so are other fears. Like paper clips lodged in the mud: when you hold a magnet over one, they all get dislodged.

This has been a very good surprise. As his mother, I find life with Joseph so much easier now that the dog fears, and others, are dissipating. I can only imagine how wonderful it must be for Joseph: his adrenals, his psyche, and his self-esteem.

When I despair that something will never get better, I must remember that God sees a solution that I may never see on my own. Dog is, after all, just God spelled backwards.

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

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

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

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

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

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

Thank you. It’s been an honor.

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

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

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

And shatter illusions it did.

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

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

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

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

Namaste.

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

The

End.

Aum, shanti, peace, peace, peace.

I had a wonderful dentist who would tell his staff that he was bound to mess up at times – that’s why it was called a dental practice, not a dental perfect. And so it goes for our spiritual practices, our soccer practice, our flute practice, our spelling practice, and every other area in our lives where we work at things.

When you think about it, the concept of practicing actually applies to everything in our lives. We’re practicing creating and maintaining a good marriage, good friendships, happy children. Practicing being good citizens, having positive thoughts, being authentic, acting with compassion, making money, being a functional adult, etc.

It’s all practice. We’re all in training.

So why, oh why, do I tend to look at everything Joseph does as a Grand Finale? If I see him pat another kid on the head or put his face too close to someone else’s, I do not necessarily have to cringe and go right into panic. Cringing and panicking are not the only options here — especially because Joseph is supersensitive to my feelings.

What Joseph is doing is practicing being social. He doesn’t know how to do it as naturally as other kids, but he wants to do it. That, in itself, is huge. And he is a great observer: he pays close attention to how it’s done and then he mirrors it. He rehearses other kids’ phrases under his breath. He is absolutely practicing.

Kindergarten is tough on us autism moms. I have known asd moms who, when their kid enters kindergarten, have cried for days. It is right in your face how your kid is different from the others, and it can hurt. You see how deep the social chasm really is. These kindergarten-aged neurotypical kids are socially very sophisticated! And Joseph just isn’t. Period.

Correction: not period. Joseph is not very socially-skilled yet. Joseph is practicing. This is why he is not going to be homeschooled: he needs all the practice he can get.

My older brother, Dan, tells me that, for most of his life, he had no idea how to make small talk. He tells a story about being at a party, sitting all alone as usual, and making the decision to learn small talk. He started paying close attention to how people were doing this small talk thing: how they would approach another person, what they would say, how they would respond. He started practicing small talk. Slowly, but surely, he figured it out.

Dan has many Aspergers traits. I’ve heard it said that Aspergers kids start doing much better around the age of 18: They’ve had that many years to figure out the social thing, and they’re out of high school and able to mix with people who hold similar interests.

I now declare to Life, the Universe and Everyone that I want to see Joseph as someone who is practicing. Not failing; not permanently delayed – just practicing.

I’m starting to talk to him in this vein. I keep pointing out how, the more you practice, the better you get. I keep spotlighting how climbing the monkey bars is easier than it used to be, how he’s riding his bike more smoothly than he used to – and all because of practice. He sees it — which is incredibly helpful, because his lot in life is going to be harder than it is for most.

One little step at a time, Joseph is learning how to be social. That’s what I need to look at: the small steps of improvement. I want to keep the conversation about practice going because eventually he will  ask us what’s different about him. At that point I want to remind him that, though things can be difficult, they are not impossible if you keep practicing.

In Toastmasters, we practice public speaking and leadership in a supportive environment. It is incredibly healing and growthful to risk, to do what is scary, in an environment that holds you in a loving way.

What I intend for Joseph is the same loving, supportive environment where he can do what’s scary and growthful for him: practice social skills. School is that right now. Rather than disregarding Joseph or bullying him, the other kids try to help him. If, or when, that changes, I will step in to advocate.

For now, it is perfect.

On another note, thanks to those of you who sent kind emails or phone calls or prayers after my last entry. They meant a lot to me. It was a long regression, but Joseph is coming out of it now in a really beautiful way. It’s like watching someone come out of a deep sleep feeling refreshed, recharged, and ready for action. Yea!

I think that the reason I’m getting this perspective on practice is due to a new practice I’ve been doing myself: Yogananda’s worry fast.

Yogananda maintains that worry is a habit and, as such, it creates grooves in the mind. If you compare the mind to an old-fashioned record, our needle falls habitually into whichever grooves are deepest. So he recommends worry fasting to lessen the depth of those worry grooves.

Twice a day, morning and evening, I’ve been consciously worry-fasting for an hour. Now I’m going to extend the time to an hour and a-half twice a day — and gradually increase it from there. It feels like I’m getting control over the anxiety rather than the other way around. About time! And all it’s taking is — guess what! — Practice!

I knew it the moment I saw him this morning. Something about the angle of his head, the placement of his eyes. The way he went directly into the living room and started humming, humming, lost in his own world.

Regression.

Blue Eyes and I had been hoping to go as a family to the monthly potluck that our friends have — to celebrate each other and this beautiful spring day. When we mentioned it to Joseph he cried, saying he didn’t want to go, he couldn’t go, he was scared of the dog, he wanted to stay home.

We couldn’t go. It would have been ridiculous to drag him, in this state, to a home filled with people on the inside and dogs on the outside.

I don’t know quite how to describe the panic and moroseness that we, as Joseph’s parents, go into when he regresses.

First off, we try to solve it. We think, what brought this on? Is it because we let him have a tiny bit of salad dressing with dairy in it yesterday? (Could the tiniest bit of dairy really do this?) Did he sleep really badly? Is it all the pollens floating around? Or, we ask hopefully, is he simply on the brink of a developmental surge?

Next we try to bring him back into our world. We get him to do chores with us, to run and play with us; we try many ways to engage him. Nothing works.

He’s so very autistic-looking. His gait, his posture, his eye contact — everything is off. It feels so hopeless.

Late this afternoon we went to our local co-op. While I was getting some potatoes, Joseph started pushing the shopping cart along. He didn’t notice that he was getting in people’s way, banging their carts with ours, squeezing one poor woman against the wall.

I was calling to him in that stressed-out, pissed-off voice of the parent, trying to get his attention, when these arms went around me and hugged me.

I turned around to see an old friend, a fellow yogi. He looked at me with all this light in his eyes and I suddenly felt the dark cloud that was around me. The light coming through him magnified for me what a dark place I was in.

Ugh.

Sometimes we think that there is no limit to Joseph’s future. We envisage him being a professional musician, having a wife and children and friends and lots and lots of happiness.

But this evening it was different. Blue Eyes and I discussed putting Joseph into a home when he turns 18. Maybe some kind of halfway house for disabled adults — something where he could bag groceries during the day and have a place to live at night. We grieved all the time and energy we are putting into him — the difficulty of our lives — when it is going nowhere.

And that, folks, is how we respond to regression. It is hard. So very, very hard.

I’ve never asked this before in my blog but, if you’re inclined to pray, would you be so kind as to pray for Joseph and Blue Eyes and me? We could use a little extra help right now.

Thanks.

I am on a liver cleanse. I’ve done this same cleanse every year or two for the last decade, but it seems I always forget the hard part until I’m in it again.

A long time ago, I was in the habit of using food in a very destructive manner. Then I enrolled in Overeaters Anonymous, went to therapy, faced many demons, worked the 12 steps hard and, with a lot of help, made my way out.

So why is this cleanse so difficult? Because I still use food to go unconscious, but in small ways — it doesn’t run my life the way it used to. Getting very conscious about my food — and, therefore, about my child with autism and my life itself — is challenging. And my body hurts. I feel like one big, toxic mass.

But you know what? I’m going to stick it out. This is a four-week cleanse and I am on day four — which, though difficult, is nevertheless easier than day three was.

The part of me that wants to grow, that wants to be conscious, is delighted. I get to work on self-control. I get to give it to God instead of diving for the object that alleviates my awareness. I get to witness the grasping mind wanting so badly to grasp.

Do you remember that movie, Airplane? As things go from bad to worse, the pilot keeps saying things like, “Guess this was a bad day to give up alcohol,” as he downs a drink. Later it’s, “Guess this was a bad day to give up heroin,” as he shoots up.

That’s what my mind wants to do. Guess it’s a bad day to give up unhealthy food.

Ha! Not a chance, mind. This thing is bigger than both of us.

What I’d like to do in my life is focus not so much on my problems. I want to focus instead on God and the amazing grace of his/her presence in my life. Instead of the problem of autism, I want to focus on the power and profundity of parenting a child with autism…of how it’s changing me.

I gave a talk to a mothers’ group last week. I spoke with them about authenticity. I shared my challenges about raising a son with autism and I invited them to speak authentically.

It was beautiful. Lots of tears, plenty of laughter. For days afterward, in my own little life, I felt the cords of connection between me and these women I’d never met before — but who met me on such a deep level.

I was only able to be so real with them because of where this journey with Joseph has brought me. It has brought complete havoc on the person I was. It has cracked the cracks and removed the mask and brought me to my knees — which, I might add, is not a bad place to be.

Not bad at all.

So I think I’ll just stay here on my knees. Knowing God’s depth-less love for me, for Joseph, for every single one of us. Knowing that there is a plan — a soul agreement — around this journey, even if I can’t see it. Trusting that God will guide me to the next step I am to take — and that this is all I need in this moment. Meeting God where I am, toxic mass and all.

Courage. To one and to all.

When your kid gets an early diagnosis of autism, one of the questions that looms in front of you — that wakes you up at night and ruins your meditations and taunts you for never doing enough to “fix” your kid — is this:

Can my kid make it in a mainstream classroom?

Making it in a mainstream class stands for so much: normality first and foremost, and functionality, and competence, and capability — to say the least. There is a lot riding on making it in a mainstream classroom.

But, having been in mainstream kindergarten for three days now, it looks like it really stands for a lot of other things. Things like following directions, sitting still, watching the teacher, raising hands, answering questions, working on your own, working with others, and speaking only when spoken to.

I’m going to hazard a guess that, eventually, Joseph will be able to do most or all of these things. In only a few days he is already getting the routine, learning to raise his hand and pay more attention to the teacher. The aid stands over him and works with him constantly, and he is learning a lot from her.

So I’m supposed to feel happy — aren’t I? It’s kindergarten. It’s not just the ideas about the thing, but the thing itself. And it looks like Joseph will be okay at it.

But here’s one other thing:

One of the yamas that yoga discusses is ahimsa, which translates into English as nonviolence. The obvious practice of ahimsa is not killing, hurting or maiming other creatures. But ahimsa can take place on very subtle levels —  including the practice of not harming another person’s enthusiasm.

And as I watch the teacher and the aid shushing the kids yet again, or telling a kid (usually a boy) to sit back down, or to keep their eyes on their paper, or to put the pencil down and wait, or to scoot up to the table, or whatever, I feel, well, torn.

I mean, of course the kids need to learn their manners and discipline and the art of listening. But “eyes on the teacher” doesn’t mean they’re actually watching. And “pencils down” when they’re quietly doing something fun and creative just seems wrong. When did we get so controlling and conformist?

There is another special needs kid in the room. She has been told what to do so much that you can see she just wants to explode. She is just barely holding it in. Some of the kids — boys, in particular — look so bored. Is this Joseph’s eventual fate: suppression and boredom? Is this what we’ve worked so hard for him to do?

It’s interesting to see the difference between what RDI teaches (“Oops! You forgot something!”) and what they do at school (“Remember to push your chair in!”). RDI wants the kids to observe, to reference, to think for themselves. The school? They want the kids to push their chairs in.

Certainly Joseph can learn to follow orders and to do things “right.” That’s not usually a high-functioning autistic kid’s problem. Can they — will they — slow down and let him figure something out by himself? Can they — will they — encourage him to pretend? Can they — will they — scaffold him during recess, when he doesn’t know how to interact with the other kids?

I don’t want a teacher who just controls and instructs. I want a teacher to fall in love with my kid’s potential.

I’m being harsh. I’m being Mother Bear, up on my hind legs, feeling protective of my cub.

Let’s start again: Joseph is in kindergarten. He likes it! He told me today that he’s got a new girl he loves (he loved someone at preschool). The other kids seem open to him. What surprises me is that quite a few other kids have special needs, too — though not autism — and he fits in a lot better than I expected. He is adjusting. He is hungry to learn. He keeps bragging about the fact that he’s in kindergarten now.

So the problem lies not with Joseph. It’s me who is having existential angst. And maybe, after a year or two, when Joseph can go without an aid, we can transfer him to one of the more alternative schools around. One that helps his mind to blossom, exercises his body and nourishes his soul.

God willing.

Just now I laid by my son as he fell asleep. I turned to watch him as his eyes closed and his breath evened out to sweet, rhythmic ebbs and flows. I felt such love in my heart for this amazing soul, and deep gratitude for the very difficult but profound journey we’ve had with him.

In some self-growth group I was in — can’t even remember which now — we used to say, “Trust the process.”

That’s it, isn’t it? Trust the process. Trust the journey. Trust God.

Trust.

Not ideas about the thing, but the thing itself applies not only to kindergarten. For me, in my journey, in my life right here and right now, it needs to also be applied to trust.

Not ideas about trust, but trust itself.

*title originally created by the poet Wallace Stevens