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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? 🙂

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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

I love our meditation group. Every Tuesday night, friends — old and new — come over to join in meditation together.

We started it a year ago and it was a huge stretch, given that we were exhausted physically, mentally and spiritually from our journey with Joseph. One of the biggest obstacles was that I didn’t feel I had the energy to get the house clean every week — much less have any spiritual clarity or inspiration to share.

But here’s the thing: it wanted to happen. So I got out of the way and let it happen. Now I find that it’s easy to keep the house up. Instead of having to clean for three hours because we invited friends over, I just run the vacuum cleaner over the rug and say, “Come on over!” A kept-up house is an easy house to keep up. Wish I’d discovered that years ago!

And the energy has come. At first we were simply exhausted every Tuesday night. But something’s shifted in the last year, and now all three of us look forward — with energy — to sharing our Tuesday nights with fellow devotees.

This last Tuesday, I got inspired by a loyal member of our meditation group: our cat, Ollie. Ollie, like all members of his species, has perfected the art of deep relaxation, and this is what he was practicing while the rest of us meditated. At some point I heard him heave a deep SIGH of contentment — the kind of sound you make when you’re slipping even more deeply into rest, when you’re surrendering perfectly.

I immediately imitated Ollie, heaving a deep SIGH and just letting go into the Light. More and more in my meditations there is a part where I simply rest in God, and Ollie providentially reminded me to do that.

It was, in a word, Divine.

Sweet rest. Sweet letting go. Sweet, sweet surrender. I am remembering to lay down my burdens and be who I truly am: a child of God. I lay my head in Divine Mother’s lap and allow her to cradle me. It nourishes me on a deep level.

I’ve been thinking about the concept of holding lately. We hold others in prayer; we hold them in our thoughts; we hold them in our hearts; we hold them in the Light.

A lot of people have held me in the last four years, since getting the autism diagnosis. Some were old friends, some were family; some were new people who showed up, I believe — professionals and new friends — just to hold us through our struggles.

It’s been so intense. Words cannot express. Sometimes life hits you so hard that you can’t stand up by yourself. I never could have made it without being held. I am eternally grateful to those who did the holding — and to God, who held me up through them.

I listened to a pastor speak recently. He told about a dreadful tragedy that befell him where he and his beloved wife got into a car accident. She was killed. He went in and out of consciousness, but finally woke up for real in the hospital. At that point he was told about his wife’s death.

The pastor said that the first thing he realized was that, as tragic as the situation was, God was in it. And that this God was the same God that had been there before the accident.

So powerful. And so true of all of it — the whole journey — mine, yours, everybody’s. God is in it. This is what I held onto when it took all my strength to get out of bed in the mornings. This is what kept me going when I felt so hopeless about Joseph. This is the concept I clung to even when I didn’t feel its truth anywhere near me.

Now, with Joseph making almost daily progress, with sleep happening for him and for me, with a beautiful, supportive group of people to meditate with, I feel grateful. And humble.

What a life. What a journey.

Thank you, God, for being in it.

The judges of normality are present everywhere. We are in the society of the teacher-judge, the doctor-judge, the educator-judge, the social worker-judge; it is on them that the universal reign of the normative is based; and each individual, wherever he may find himself, subjects to it his body, his gestures, his behavior, his aptitudes, his achievements. — Michel Foucault

My earliest memory is of standing a few feet from my mother. She is crouched down, arms held out toward me, urging, “Come on! Come on!” Around me are some other people — brothers, sisters — friends, perhaps, but they are mostly a blur.

My mother’s eyes are so very clear to me. There is LOVE — incredible, unconditional, indescribable love — pouring from her eyes into my being. And since I am so young I am very sensitive, and I can also feel that force of love coming from, and through, my mother. It enfolds me, it holds me, it lifts me up.

Paramhansa Yogananda says that God’s unconditional, incomprehensible love is most closely represented by a mother’s love for her baby. In this memory, I am completely filled with that divine love.

In it, I know I can do anything. I take my first few baby steps, finishing my first walk in the arms of my mother. I hear the applause around me, I feel my mother’s excitement, and I know that I am so very, very loved.

What happens to that sense of being unconditionally loved? I believe I was connected to it all through my elementary school years. It was only when I started (shudder) junior high that the all-enfolding sense of being loved evaporated.

I remember the exact instant it happened. First off, my childhood soul mate — my best friend of all best friends — moved away just before I started sixth grade, so I was already feeling bewildered, like I’d lost half of myself. Then, on the third day of sixth grade, I got onto the school bus. One of the popular girls looked at me and said, derision dripping from her voice, “Do you always wear stretch pants?”

The truth was, I did always wear stretch pants. I liked the little straps that fit under my feet and the freedom of movement that stretch pants allowed. But when I looked around, I noticed that nobody — not one single other person — was wearing stretch pants.

A light bulb lit up in my mind. People care about what you wear! It said. They don’t think you’re worthwhile or loveable unless you look right!

I remember feeling disbelief, but then realizing I’d better get on the stick or I would be the target of all sorts of bullies.

Trouble was, it took me three years to really get the look together. So for those three years in junior high, I was spit upon, slingshotted, called horrible names, and more.

But toward the end of those three torturous years, I started to crack the code. I intentionally studied what made people acceptable in this strange new world where you had to conform in order to be loved. And I decided to play the game.

Off went the blue cat-eye glasses and on went contact lenses. Off went the K Mart clothing and on came stuff from the mall. The hair got styled fashionably. And when I started high school, with almost all new people, I  made my way quite high up the popularity ladder.

Still, I never lost the sense that it was some ridiculous game and I’d simply learned to play it. I looked with pity upon those students who, for whatever reason, couldn’t or wouldn’t figure it out and play along. I could never be mean to them the way the others were.

Now, as the parent of a kid on the spectrum, I wonder: Do kids with autism ever crack the code? Do they, can they, learn to play the game — or are they always the target of bullies, of impatient teachers, of people in general who don’t understand? Dr. Temple Grandin talks about those torturous school years. My ASD nephew went through it. So did my cousin’s ASD boy. Twelve years of school — no friends, merciless bullying, and always the outcast.

You may have read the recent story about the boy with aspergers who, after being yelled at yet again by his teacher, got onto the New York subway and lived there — one train after another — for ten days. He took the battery out of his cell phone because he didn’t want any phone calls. When he was finally “caught” he was asked why he’d done it.

His answer: He just wanted to be somewhere where nobody yelled at him.

When I think about Joseph going to a mainstream school, I see myself falling into the “act normally” trap. I demand, over and over, that he  stay seated during meals (he loves to pop up every few minutes to sing and dance, or spell out a word on the frig, or whatever catches his fancy). I insist that he not make strange movements in public. I try to make him brave about going down slides and things like that.

But when I think about homeschooling him, or having him in some other personalized learning program where teachers appreciate the differences in children, then I find myself relaxing and loving what makes Joseph so special.

Take music, for instance. Even Joseph is astute enough to know not to compose in public — but when he is at home, symphonies swell up in his very being, making him move and sway and hum and sing.

When I express interest, he’ll share parts of what he hears with me: “Here come the violins ( he makes some violin music). Now I hear flutes (hums a beautiful, high-pitched melody) — oh, here’s the trumpet” — and on and on.

What did Mozart or Beethoven act like when they were five, I wonder. Did their peers (and maybe even their parents) think they were a little crazy? Would public school — or any school — have crushed the music of their souls?

I guess the question I have about the music that pours through Joseph is: is this autism or is this an amazing gift from God? Or does it have to be one or the other? Maybe the answer is, simply, yes to all of the above.

The other question is, is there a place — other than home — where someone could see, and draw out, the gifts that God has blessed him with? Where his spirit won’t be crushed because he isn’t “normal?” Where he could fit in, autism and all, and not be seen as lesser than the others?

And if there isn’t, does the problem lie with kids like Joseph, or with the rest of us?

That’s it. I’m ending this entry with questions, not answers. Because I have faith that when we’re asking the right questions, we’re getting very close to finding the right answers.

It finally happened.

I was cooking dinner while Joseph was sitting at the kitchen table,  drawing a picture. He was excitedly narrating what he was drawing as he went along. I said to him, “I’ll know you want me to have a look when you say, ‘Mom, look at this.'”

Lo and behold, a few minutes later he said it. For the first time, ever!! “Mom, look at this!”

Then he drew something else and said it again. And so it’s continued for the last few days.

This evening he came into my room and said, “Mom, look at this train I drew!” He waited for me to look at him, and then the picture. Then he continued. “This one is the steam engine and this one is a passenger train. There is the track, and there are the rectangular windows.”

I remember declaring in an earlier post that, if Joseph ever said anything like, “Mom, look!” I would die happy. So when I die, please know that I have, indeed, died happily. 🙂

He’s also gone beyond just calling for my attention with  one little “Mom!” (which, in itself, was a huge milestone). Now it’s “Mom! Mom! Mom! Mom!” Or, for that matter, “Dad! Dad! Dad!Dad! Dad!”

So something is changing. Some new neural pathways are forming, new synapses are firing. Something, somewhere is developing.

It’s exciting. It’s great. It’s — wow — very, very encouraging.

But.

(See? We can always find a but.)

Joseph still has autism.

And I think that maybe, perhaps, possibly even probably, he always will.

He may always have some funny, jerky movements. He may always have a more challenging time with interpersonal relationships. He may always have a not-so-good sense of what’s appropriate and what’s not in social situations.

But I also think that maybe, perhaps, possibly even probably, he’s going to make it in this world.

Joseph just seems to draw people who are good, kind and loving. Whether it’s teachers (this means you, M.P.), sitters,  or friends — both big and small — people love his good, kind, simple and innocent heart. He’s a  bit like Forrest Gump in that way — but more mentally switched on, thank God.

I’ve been listening to a talk that Dr. Temple Grandin gave at the MIND Institute (http://www.youtube.com/watch?v=2wt1IY3ffoU). She is able to talk about her autism in a way that allows us ‘others’ to understand it better. She talks about a book she co-authored with another autistic person. He was more switched-on socially, so that was a bit difficult for them, but they both were obsessed with school buses, so that was cool.

I love the way she is able to laugh at herself. Autism has given her a different perspective than the “normal” person, and she has used this to carve out a unique and rewarding life. She offers hope — and ideas — for ways that people with autism can work, and live, and function in this world.

Maybe it’s not about making Joseph “normal.” Maybe it’s about helping him to do what we are all learning to do: manage our weaknesses and foster our strengths.

Maybe diversity isn’t so bad. I went to elementary school with an albino boy. He had white hair, always sat in the front row, wore very thick glasses and used a typewriter. He was also bright and funny, and, while we were fascinated with how he was different, we also loved him for who he was. We “got” him, in today’s vernacular.

So I think I’m going to stop acting apologetic about Joseph’s funny movements and lack of social graces. We will continue to help him grow in all ways, but we will also open more to the gifts of what we have.

When Joseph says, “Mom, look at this!” I want to remember that it’s not just “this” he is asking me to look at. He is also asking me to look at him — to see the beauty of his being, to be a part of his world. He wants me — and all the rest of us — to “get” him.

Sharing his world. I think that maybe, perhaps, possibly even probably, it doesn’t get any better than that.

I grew up in a determinedly non-religious, Jewish family. I believe that I always felt God’s whispers in my heart, but I didn’t know what to do with them. In my college years, as I experimented with various drugs, my longing began to emerge more fully.

How I wanted a spiritual teacher. I remember one night, looking up into the stars, beseeching the heavens for that person who would teach me about spiritual matters, who would help me to know God.

That was the first time I ever got an answer from the Universe. It was: wait.

I was both terribly depressed and absolutely thrilled that Someone, Something had responded to my call. And I waited. And I watched.

When I finally found that my path was an inner one of meditation and a more universal view of God, I dove in headfirst. Things were rosy and exciting. Many times I felt God’s quiet, inner presence guiding me or loving me. And I loved her back.

Then I got an email from my best childhood friend. Her brother, Daniel Pearl, was the reporter from the Wall Street Journal who was kidnapped in Afghanistan. The Pearls had taught me all I knew about the Jewish religion and our families had been very close for a while. I had watched while the Pearl children went to Hebrew school. I celebrated Passover and Sabbath with them. They are exceptional, talented people who live their lives with integrity.

After Danny was brutally murdered, I had to process through all the grief and horror just like everyone else who’d known him and loved him. And one of the discoveries I made was that I had a belief that ran like this:

If I do everything right, God will leave me alone.

Leave me alone in the respect that He won’t do anything horrible to me, in that tragedy won’t touch my life too terribly. But when I saw what happened to the Pearls, knowing that they “did everything right,” I realized that the game was much bigger than I thought.

So, I asked myself, why do I even try to connect with God if she won’t take care of me, won’t  play nice with me?

Ultimately I came to the fact that I am a part of God. I cannot separate from him no matter how he treats me, and I will always want to connect more deeply for the same reason a wave always melts back into the sea.  We are one.

But this God figure is tough. She is not only awesome; she is awful. It is the awful grace of God that one runs into in one’s life,  once or twice or more often – depending on what kind of lifetime you’re having.

The Goddess Kali, from the Hindu tradition, personifies this tough aspect of God. Ma Kali is a black-skinned Goddess who wears a garland made of 52 skulls and a skirt made of dismembered arms. In two of Her hands, She holds a sword and a freshly severed head that is dripping blood. She can appear to be wrathful and terrifying.

I knew an Indian man who was an ardent follower of God as Kali. He prayed to her constantly, worshipped her daily, constantly asked her to appear to him. For around 25 years he never stopped asking to see her in form. He longed, he wept, he pleaded to see her for himself.

Well, one day as he was praying he looked up, and there she was. Do you know what he did when the object of all that longing was finally there, right in front of him?

He screamed in terror and ran.

The Goddess Kali can do this to people.

Since autism entered my life, I have felt Kali as a constant companion. Her ferociousness has blown me away. Her willingness to sever my ego is enough to make me scream with pain.

And yet. Kali is said to be a most compassionate mother because she provides moksha, or liberation, to her children. She is the destroyer of unreality. When the ego sees Kali it trembles with fear because the ego sees in her its own eventual demise.

Underneath all the scary parts of Kali is the loving Mother, who is sweet, affectionate, and overflowing with incomprehensible love for Her children.

At this point in the autism journey, I can see both these sides of Kali. I am amazed at how surgically precise she is at removing my illusions, and how willing she is to do so — without anesthesia, I might add — for my own good.

But I am not so scared of her anymore. A few years wrassling with one’s opponent can build up, perhaps not friendship, but most certainly respect. Mostly now I feel her when, for example, the pangs of wanting a neurotypical kid get strong – when I feel I missed out on most of the fun of raising a child. I hear her laugh when I indulge in self-pity.

And I have come to trust her. God, in the form of Kali, is tough. The epitome of tough Love, if you will. But fire, while searing, is also purifying. Sometimes now, in that roaring fire, I will feel her love. I will know that the Mother is with me, tenderly looking out for my highest spiritual potential.

So, I have learned, it’s most certainly not about doing everything right in order to avoid the Big Lessons from the Big Guy. What a relief to give up on that one.

It’s about learning to surrender into that which is hammering at you, learning to see with clarity beyond the illusions in front of you — and, most importantly, to really, really know that it’s all being done out of Love. We came from Love, we will go back to Love, and Love is here and now, always, always.

In my journey, it’s required tough love to bring on an experience of true love. Such is the dance of spirituality and autism.

It’s been a quiet week in Lake Wobegone. Joseph (and, therefore, Joseph’s family) has been dealing with anxiety issues once again.

Sirens are very hard for Joseph. He can take other really loud noises but there’s something about the combination of  loud sirens combined with the thought of ambulances, fire trucks and other vehicles rushing to an emergency that just freaks him out.

A friend and her boy came over the other day. We took a walk over to a bus stop that was a little further away, in order to give the boys some exercise. Then we caught the bus into town, which is something that the boys love to do.

But on the walk over, we heard siren after siren after siren. Just when we thought it was done, another would start up. Poor Joseph. The only way he can cope is to stop whatever he’s doing and cover his eyes until it’s over. Not his ears, mind you (we couldn’t actually see the rescue vehicles), but his eyes.

So, as the sirens wailed nearby, my friend turns to me and says, “It’s almost like it’s on purpose!”

It feels that way sometimes. Like God is up there saying, “Let’s turn the heat up for little Joseph and see if he can take it.”

Covering his eyes when he’d actually be a lot better off covering his ears. It makes me think about everything we do in order to feel safe.

Just a few days ago, I heard President Obama say that the primary job of the government is for the protection and safety of its people; that’s why we’re at war. I think about all the insurance we buy in order to feel secure; the “safe” places we put our money; the fact that we create a nest egg at all. We wear armor, physically (for snowboarding, skate boarding, etc.) and psychically (keeping people at an emotional arm’s distance). We buy nice houses in good neighborhoods — sometimes behind locked gates. We take our Xanax and our homeopathy. We say our mantras and our prayers.

I once met a woman who’d lost 100 pounds. She said that the hardest thing about it was that now people stood closer to her. She didn’t have that physical fortress around her, keeping them away.

Safety. Amazing what we’ll do for it.

My little boy doesn’t feel safe at times. More than most. Toward the end of his school day he frets, sometimes panics, about whether or not his mom will really come to get him. Dogs are a constant terror. Crowded new places are no bed of roses, either.

It’s the limbic system, where the rational part is not calming down the primitive part of the brain. How do you battle something like this?

Two things work a little. One is called approach and study. So there’s a dog up ahead. I take Joseph’s hand, we stop and I say, “Oh look, there’s a big dog over there. Do you think he looks friendly (I am trying to teach him dog body language)?”

If Joseph doesn’t immediately panic about the dog’s presence, we can talk about the wagging tail and the ears up and the dog’s general demeanor. Theoretically, we can then edge up a bit closer and study some more, but we haven’t gotten to that point yet.

However. We do have friends with a mid-sized dog, and we have graduated from the dog being banned outside when we visit to the dog being held on our friend’s lap to Joseph actually touching his tail on our visits.

And that’s the second thing that helps a little: repetition. Over and over we visit this dog, Miles. Over and over we talk about how sweet Miles is, and again and again we bring Joseph over to get to know him.

That’s our little anxiety/safety issue, but I’ve been thinking about safety on a larger scale, too, and I’ve come to one undeniable conclusion:

NO ONE IS SAFE.

Our community is being rocked right now because a sweet 8 year-old girl was in a car accident last week. Her skull is fractured, she’s in a coma, and she’s got titanium rods in her legs. Will she survive? If she does, will she be brain damaged? Nobody knows.

This is a family that, two weeks ago, I would have envied a bit. Loving parents who got to raise a nice, neurotypical girl.

But sometimes everything we do to be safe just evaporates. Our very foundation is whipped away, and we have nowhere to stand. It’s terrifying.

Unless and until we realize that we are in the hands of God, and that is that. We can do all this stuff to feel safe, but the truth is it’s not our business: it’s God’s.

And this leads me to another undeniable conclusion:

EVERYONE IS COMPLETELY AND ABSOLUTELY SAFE.

Why? Because God is holding us all in His loving arms.

What is the biggest fear? Death. We tell Joseph that death is going home to God and, deep in my being, I know that this is true. Going home to the Source of unconditional love, light, and peace. How unsafe is that? And we don’t have to wait ’til we die to access this Source. It’s available here, now, always.

Here’s the part we don’t get: though life on this planet feels very unsafe, there is an invisible, intangible cable connected to us.

God’s got our backs.

I wonder sometimes how differently I would live if I really, truly got that, in every fiber of my being. That I was safe. That God, in Her depthless love, was always with me, protecting me, caring for me. Would I be lighter, feel freer, see the humor in what is now only viewed with fear?

How about Joseph — how differently would he live if he could get that he is truly safe, on every level?

I suppose it is a question we could all ask ourselves. And then, when we feel that safety, we could focus more on the invisible cable that connects us to God than on the jump (or, let’s face it — the push) off whatever cliff’s edge we’re currently teetering on.

Joseph had surgery this past Tuesday. In a delicate area. Ok, ok, I’ll tell you: he had a medically necessary circumcision.

I was, naturally, nervous about this. But my nervousness increased a lot when a friend reminded me that there was a lot of debate about general anesthesia and the toxicity it caused in children with autism. In particular, the use of nitrous oxide has been heavily debated in autism forums and websites, and there is concern that it can make an abnormality with folate (something many autistic people have) even worse.

So Blue Eyes and I hit the books — er, internet — to do some research on anesthesia. We discovered a lot of information, including an article by an anesthesiologist nurse with an autistic child (http://www.autismone.org/content/anesthesia-autistic-child-sym-c-rankin-rn-crna) that spoke particularly about which anesthesia was better for kids with very sensitive systems. It said to make sure your anesthesiologist understands that autism is not  simply a behavioral thing but a physiological condition, and that it needs to be treated as such.

We liked the article so much that we printed it out for Joseph’s anesthesiologist to refer to. We wrote down the types of anesthesia that we felt comfortable using.

But on the morning of the surgery, when we actually got to meet the anesthesiologist, he was arrogant. He told us that the article was anecdotal, that he knew what he was doing, that we could either do it the hard way (our way) or the easy way (his way).

Sigh. I know all doctors aren’t like this, but why are most of them like this? I was on the verge of demanding another anesthesiologist, but I held my tongue. Instead we stood up to him, as we have learned to do in the past few years, insisting that we work together on the drugs that would be given, and not given, to Joseph.

After all, isn’t “anecdotal” the way everything got decided before we developed an obsession with facts? And how do you get facts if no one is doing the research?

Blue Eyes and I had to be willing to go into the discomfort of disagreeing with an “expert.” We had to go on the edge of rudeness, insisting that our needs be taken into account. It took some discussion, but eventually the doctor agreed not to give Joseph nitrous oxide, and we all agreed on what Joseph would get.

This experience was very different from my emergency c-section. When that happened, we gave all our power away to the doctors. Whatever they thought was best was what happened. To this day, I still think it was all those antibiotics that caused Joseph’s already-compromised immune system to tip over the edge into autism.

Do you know which is the very best yoga posture? Standing on your own two feet. This is one of the things having a kid with special needs has taught me to do. Joseph got through the surgery beautifully and is recovering without any visible signs of trauma (other than the, well, obvious one).

We all play roles on this planet. The anesthesiologist got to play arrogant doctor, and I got to play insistent, determined parent. But I can’t help but think that, if insistence can decrease arrogance in the medical profession, then we need some more insistent parents. We need to arm ourselves with information, stand in our truth, and yet be open-minded to the doctors’ input. It’s an interesting balance.

Perhaps, if standing on your own two feet is the very best yoga posture, it’s those balancing postures that come next.

I have a large, lovely, crazy, wonderful extended family. When we get together for the holidays, there is usually around 30 people. ‘Most everyone is happy to see everyone else, and there is lots of conversation, laughter, and catching up.

In any gathering like this, you can see that some people get more easily overwhelmed than others. You can find a brother-in-law sitting alone reading, or a teenager lying on the couch listening to her ipod.

But what do you do when your kid is really, really sensitive? And shy? When s/he gets overwhelmed very quickly? And doesn’t know how to fit in?

We managed to avoid most of these difficult questions this year, because we missed Thanksgiving. We were in Maui.

But when we came back, I started to miss my large, lovely, crazy, wonderful extended family. So we called my older brother, Dan, and invited ourselves to his house for an overnighter.

I prepared in advance for this visit by listening to an RDI Webinar that gave  tips for holiday visits. One of their strategies was to make sure that the child with autism had a quiet place to retreat to.

Hearing that was a real “Ah ha!” moment for me.

You see, my younger brother, Aaron, has two lively young girls. As much as we love them, when we’ve stayed there I’ve seen Joseph get very withdrawn. He gets w-a-y overwhelmed and there is no private, quiet space for him to recover. He always sleeps badly.

I haven’t known how to explain to Aaron why we can’t stay with them, but now I have the words: Joseph needs a quiet place to retreat to.

Dan and his wife, on the other hand, have kids who are grown and gone. So half of  their house feels like a peaceful sanctuary.

Another plus is that Dan has a dog. Normally the mere presence of a dog would make the whole visit unthinkable, as Joseph is terrified of them. But this is no ordinary dog: this is a chihuahua. All four pounds of her.

Because she is so tiny, Joseph is not really scared of Randi. Randi is the one and only dog in our acquaintance who has this distinction, so it is no small thing. She is a great practice dog for us.

The RDI Webinar said to find roles for Joseph as much as possible, as it’s not always easy for people with autism to know what to do — how to fit in — among other people. So I got him involved in drawing and then giving the drawings to people. When it was dinnertime, he helped with table setting and various other things.

It worked really well. And then he slept beautifully.

Yesterday there were only the five of us, and then this morning two of Joseph’s cousins (the grown-up kids) arrived. At first, Joseph kept his distance. But eventually he felt comfortable enough to join us at the kitchen table.

Later, when it came time to go out, he requested that his cousins ride in our car, one on each side of him. This was big.

When they first sat beside him, he covered his eyes (he is both autistic and shy. I don’t know which was happening there — maybe both.) But slowly the hands came down and he connected, smiling and talking with them.

So there it is. Nothing monumental, but these small steps in connecting are huge steps for Joseph.

My hope is that, as Joseph makes these connections with members of his extended family a bit at a time, it will eventually be easier to be with more of them at the same time.

*            *         *

Joseph isn’t the only one in our little family who needs a quiet place. That’s one of the main reasons I meditate. My teacher says to create a portable paradise of peace within, and I don’t know what I’d do without that peaceful place.

Since Joseph was born to parents who meditate, we will, when the time is right,  teach him to do it as well. So perhaps he’ll learn to access the peace that passes understanding within his very own self.

Wouldn’t that go a long way in being able to stay centered and unshaken in crowded gatherings? We wouldn’t have to stay only in houses with quiet places when Joseph comes from that quiet place inside.

It will be interesting to see what happens when Joseph learns to turn inward for his solace — to turn to God for the calmness, peace, and serenity he needs.

I find it absolutely invaluable to live my life (as best I can) from the inside out, where my internal world defines my external world. It gives me much more serenity than living from the outside in, where what’s happening externally determines my level of serenity– or, more often, my lack thereof.

So what will happen when Joseph learns to live from the inside out? What will happen when autism meets yoga?

Stay tuned, dear reader, stay tuned.

Joseph is doing some quantum leaps at the moment. The way we can most see it is in his drawing. You see, his coloring has been mostly squiggles and blobs and blurs, which he has interpreted as trains or thunder or some other objects.

But the other day, in preschool, his amazing teacher taught him how to draw faces. She got a mirror out so that he could look at his own face, and she had him look at hers as well. They figured out together that there are two eyes toward the top, a nose in the middle, and a mouth underneath.

And now Joseph draws face after face, with bodies, legs and feet, too! It’s an exciting step in development. One of my friends, who hadn’t seen him in perhaps a month, couldn’t believe the changes when she saw him yesterday. So hurray! for progress.

We were driving home from the store the other day when Joseph said, “There’s another silver Matrix!” Sure enough, right in front of us was the exact same make, model and color car that we drive.

I started waxing philosophically to Blue Eyes. Maybe that’s me in a parallel universe, I said. Maybe that me has a neurotypical kid. I wonder how she is different from this me?

So, Yoga Mother with the neurotypical child, how are we different? Have you had to learn patience as well as I have, repeating the simplest thing endlessly in the hopes that your child will one day grasp it? Have you tasted the humility of your child being different, being disabled, of your child (and, therefore, you) not fitting in when you’ve desperately wanted him (and you) to? What is it like to not have been imprisoned in walls of isolation — walls we are only now really breaking out of?

Most importantly, other Yoga Mother, I want to know what your spiritual life is like.  Have you experienced drowning in your own delusion — in stress, anxiety, hopelessness — the way I have?  Have you ultimately come to the knowing that God gives it all to us — that S/He weighs it out, measures it, makes sure it’s just right, and then sends it along — even if we never really understand why?

I think, other Yoga Mother, that the spiritual difference is probably the greatest difference between us. It’s not that you aren’t spiritual; it is the most important part of your life. But you haven’t been tested the way I have, and so you haven’t been forced to dig more deeply than you ever thought possible. You haven’t been broken open the way I have, so you haven’t experienced the same magnitude of comfort, grace, and simply the presence of Almighty Spirit with you every infinitesimal step of the way.

Would I trade with you, Yoga Mother of a neurotypical child? Yes. No. In a minute. Never.

Guess I’m not ready to answer that question. 😉

I have a friend who has recently turned 60. She says that, when you look back from that vantage point, everything that’s happened makes sense. She’s had some whopping challenges in her life — so, coming from her, this was no light observance.

And that is where I end today’s post: with trust. Trust that this journey is my journey. I wasn’t meant to be in that other silver Matrix. This road may have some incredible bumps, but it’s my road, my journey. So I bless you, other Yoga Mother, and let you go your way while I, with trust, an open heart, and the grace of feeling God all around me, go mine.

In our sleep, pain, which cannot forget,

falls drop by drop upon the heart,

until, in our own despair, against our will

comes wisdom through the awful grace of God.

— Aeschylus

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

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

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

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

I can relate.

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

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

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

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

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

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

About Joseph.

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

Wow.

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

Chronic situational anxiety? asks Lisa.

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

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

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

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

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

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

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

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

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

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

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

We’ve been back from Maui for two days now. We came home, packed away our shorts and tank tops, and put on our long underwear. Yesterday evening we watched the first snowfall of the winter turn our yard white. It was pretty.

But just for these few moments, I ask to you join me once again in lovely, warm Maui, where the breezes blow such soft sweetness into your mind that you are unable to hold even the slightest of grumpy thoughts for more than a moment.

My last post had Joseph and me hanging out together at an expensive resort. After our healing time in the hotel room, we sauntered back out to the pool. This time it was a little easier for both of us. I stopped wishing that Joseph would just relax and enjoy himself like the other kids, for God’s sake, and he stopped — what? Feeling my resistance and reacting to it? Being as scared because he’d already gone to the pools once?

But it still wasn’t easy. In particular, there was a water slide in the pool — an easy, gentle one — that had Joseph scared to death. He’d watch smaller kids shoot down it — he’d stand there, watching, for long periods of time — but he couldn’t go down himself. I forced it once by pulling him on my lap and taking him down with me, but he screamed bloody murder and I got those looks from the other parents: Stupid mother! Abusive, uncaring woman! And I gave it up.

Eventually we got into the hot tub and Joseph got a little more courageous, swimming by himself small distances and just having fun. It wasn’t long before Blue Eyes joined us. Then evening fell and we watched a magical Hawaiian ceremony that Joseph still talks about.

But here’s the thing: when we left the resort, he was still scared of the pool, scared of the little slide in the pool  — just…scared.

One of the ways autism can present is in this kind of fear. There’s some evidence showing that the primitive part of their brains is not as well connected to the rational part, so all that primal fear comes up unabated. I’d say that, in Joseph’s case, this is probably true.

This fear presented strongly around the ocean, too. Joseph was very afraid of going in past his ankles But one day I just forced it…gently. I scooped him up and carried him into the water, holding him tight and trying to make it fun. He actually enjoyed it for a bit.

Blue Eyes saw it happen and took up the theme, giving Joseph a piggy-back ride right into the ocean. When Joseph protested I showed up behind him, wrapping my arms around him and pronouncing him a Joseph sandwich. Somehow this made him feel safe, and he actually enjoyed being in the ocean for quite some time.

Then, RDI style, we very consciously spotlighted what had happened, showing Joseph how far out he’d been in the water and how well he’d done. We even took a photo so that we could remind him with a visual once we got home.

In subsequent visits to the beach, we progressed to Joseph doing some assisted swimming from me to Blue Eyes and back. And when he was on his own, he’d venture in waist-deep. Everyone felt more competent.

Being more confident in the ocean must have felt so good to Joseph. Before that I would watch him watching the other kids in the water, quite a few younger than him, and I know that somewhere, perhaps not even verbalized into thought, he was wondering what was wrong with him that he couldn’t get into the ocean like that.

A few days before we were to come back home, Joseph started talking about the resort pool again. He said he wanted to go back; he wanted to go down the slide; he wanted to put his head under the water this time.

It looked like we didn’t have time to do this, and then a little Divine Choreography occurred: the people we were house sitting for called. They were delayed; could we stay an extra day? Thank you, yes. So, on our last full day in Maui, we drove the long drive to Lahaina and snuck into the resort’s pools.

Normally Blue Eyes and I have a lot of integrity. Normally we would not use a hotel’s facilities without paying for them. But our son’s special needs make us bold sometimes. He seemed to need closure on his fears, and we were curious to see what would happen. We wanted to help him. So in we snuck.

Joseph got onto a boogie board and swam around the entire lagoon twice. Then he went to his nemesis: the slide. He sent his boat down. He outright refused to go down on my lap. He sat at the top of the slide and, making sure that Dad was at the bottom should anything go awry, he slowly let go.

Many times. He conquered that damn slide. Then he put his head under the water. Then he swam on his own a fair distance.

When we left those pools (having constantly dodged the lady with the clipboard who was throwing non-guests out), we had by our side a competent, satisfied child.

Today was Joseph’s first day back at preschool. His teacher couldn’t believe it: Joseph used to have a paralyzing fear about going sledding down the long hill at the school. But this time he sat in the front and rode the whole way, twice, having the time of his life.

The moral? Never give up on your kid. Things may take longer than they do for typical kids — heck, they may not even happen in this lifetime — but when you run out of patience, remember that you can draw on the boundless patience of our Divine Mother/Father.

Most importantly, no matter what the obstacles may be, do everything you can to help your kid feel competent. That way, the (shudder) free-fall of incompetency and fear can be replaced by riding high on an upward spiral of competence and confidence.

First and foremost, I’m scared of autism. When I see Joseph doing his strange movements, when he doesn’t answer my questions, when he just seems zoned out, I’m scared. Scared that I’ve lost him, scared that other people can see he’s autistic, scared that he’ll never make it in mainstream society.

Scared of what will happen to him after Blue Eyes and I die. Scared that kids will make fun of him, bully him, douse the laughter and joy in his eyes.

And now something incredibly scary lurks. Just around the corner, in the shadows. I feel it constantly.

“It” is school.

I live in a small town, so it’s easy to keep in touch with the other ASD parents. Naturally, I’ve been keenly interested in what happens when their kids start school.

It’s not looking good. Charter, public, or private school, these kids are having a rough time of it. One kid, extremely bright and personable, is exhibiting such antisocial behavior that they’ve put him in the classroom with the severely impaired children. Another is having such a difficult time adjusting that the school requires one of his parents to be there with him full-time.

Scary indeed. And these are good schools. I am not naive enough to think it’ll be any different for Joseph.

I’m in the middle of Barack Obama’s book, In My Father’s Dreams. When he was an organizer in Chicago, he worked in a neighborhood rife with gangs, drugs, and people isolated behind their locked doors. A scary situation. But as he worked with these people, they began to realize they could make a huge difference — when they pulled together. And so they did.

Inspired by this, I sent out an email today to my little ASD community of parents with early school-age kids. I don’t know a solution, I said, but I think we’ll do a lot better together than we will alone.

People all over the world are facing the dilemma of their ASD children not fitting into schools. Surely some are working out solutions. Let’s pool our expertise, do some research, figure out what we can do, I wrote.

One mom has written back to say this:

“I am so in! I am really, really struggling. I would love to touch base with people who get that I am existing in an alternate experience from other moms with 7 year olds. They tell me about how proud they are about how many books their kid has read. I’m proud that my kid didn’t hit the Down Syndrome girl in the head again when he threw his dry erase board for ‘writing without tears (yeah, right!)'”

Scary.

I’m waiting to hear from the others. This — joining together for support and manifestation — is not scary. It’s exciting! Together we can make a dramatic shift — for our children, and for those children Joseph and Friends fighting fear, Halloweento come.

So maybe fear has its place. Sometimes it’s just old baggage, of course, but sometimes it has something important to say. And in these cases,  a mature, compassionate response could be to reach out, join hands, and let it spur us into action.

The Take Back the Night movement comes to mind. It symbolizes women’s individual walk through darkness and demonstrates that, united,  women can resist fear and violence.

ASD parents: The schools are not in charge. We are. Time to take back our kids!

green striped jammiesThe title of this post comes from the movie Groundhog Day. Remember that movie? Every day it’s the exact same thing, for God knows how eternally long. Then, finally, one day it’s different — and Phil says, “Anything different is good.”

Blue Eyes and I have been quoting this line to each other ever since the autism diagnosis. What is it in these kids that makes their minds get stuck on something?

RDI labels inflexible thinking as one of the top five  deficits of autism. Joseph doesn’t have it to extremes, but we do see it.

For instance, Joseph has had these words that he wouldn’t say. Refused to say. There seemed to be no rhyme or reason to why he chose these words not to say.

Those words were: coffee, Aunty Wendy, Kristin (a girl in his preschool), trick or treat, and ambulance.

He also gets stuck on clothes. Last winter, for example, Joseph loved his flannel railroad jammies with the long sleeve shirt and long pants. He got so stuck on them that he insisted on wearing them every night during the hot (as in 90-100 degrees F) summer. If you scan through this blog, you’ll see him in them in several posts.

But here we are, 3 + months into Valtrex (anti-viral — see biomedical posts). At first, the Valtrex Joseph sprinted out of the gate, leaving the old Joseph in the dust. We hit a little regression here and there and then, most recently, a plateau that lasted a couple of weeks. We considered taking him off Valtrex…wondered if it was time…

But now he’s got a second wind. When we first started the Valtrex we saw the most changes in vocabulary, eye contact, use of names (finally), that sort of thing. This time we’re seeing what I officially call Unstuckness.

Unstuckness.

Note the photo at the top of this post. This is Joseph in his green-striped pajamas. He has worn these now, on his own initiative, for two nights in a row. Blue Eyes and I almost fell over when he walked into the kitchen wearing them.

He’s choosing other new clothes to wear, but it doesn’t stop there. He’s saying those words — after more than a year! All of them but ambulance, and, in truth, he is pretty darn scared of ambulances and the noise they make, so “white thing” is a safer substitute.

And, hey, how about this: he answers people when they say hello. He tells me, “I can do it myself!” He is thinking carefully about choosing the right pronouns before he says them.

I happened to get Joseph’s last swim lesson on video. There is a great moment where he jumps in the pool and then tries 3 times to get the teacher’s attention in order to acknowledge how well he jumped. He finally gets her attention by saying, “I did it!” loudly and with pride.

I sent that footage to my RDI consultant, who responded that it brought tears of joy to her eyes. Tears of joy in our consultant is very different — and very good.

So, to those of you who are going through the agonizing monotony of sameness, I say hang in there. I know the physical and soul weariness of that inflexible thinking. But don’t give up on your kid. Amazing things can happen, if we can be resilient and open.

Anything different is good. And when it’s good, it can be R-E-A-L good.

Autism and Spirituality: the Dance

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