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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Your children are not your children.

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

They come through you but not from you,

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

You may give them your love but not your thoughts.

For they have their own thoughts.

You may house their bodies but not their souls,

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

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

For life goes not backward nor tarries with yesterday.

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

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

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

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

Blessings to all.

A couple of nights ago, I had a scary dream. The details are sketchy, but somehow things were closing in on me, squeezing me, smothering me.

I gathered everything I had and yelled, “HELP!!!” Immediately things started shifting, softening and giving me some space.

Then Blue Eyes took me from the dream: “Yoga Mother! It’s okay. You’re dreaming!” I looked at him, wide-eyed. “You heard me yell for help?” He nodded affirmatively, and then he drifted back off to sleep.

As for me, I laid there feeling surprised and grateful. In some far-off post I’ve mentioned that, for many years, I’d dreamt of terribly dangerous situations where I’d be unable to call for help. I might try calling 911 but the phone line would be down. Or I’d try to scream and only a whisper would come out. I could never ask for help, and help never came.

Every now and then, I’d still have a dream like that. But this time — wow! I’d called for help so hard that it was heard and responded to not only in my dream life, but also in my real life! What a lovely shift.

on drumsAs always, the inner reflects the outer and the outer reflects the inner. Life has shifted a lot since I wrote that first post six years ago. Joseph still has autism, of course, but he’s a pretty different kid from the one he used to be. He’s made it to 5th grade in a neurotypical class. He can hold a fairly good conversation and he has good eye contact. He is making his way in this tough old world, and I am so proud of him. He’s still a pain in the butt and probably a lot more work than your typical kid, but we can live with that.

I feel like we’ve worked on everything: Eye contact and leaky gut and nose picking and voice regulating and social skills and fear of dogs and sleep disorders and gluten sensitivity and severe constipation and general anxiety and taking responsibility and appropriate stimming and self-regulation and co-regulation and crowd-tolerance and noise sensitivity and sensory defensiveness. And on and on.

But since, thanks be to God, much progress has been made in all these categories, now we get to work on what the experts say autism is: A processing disorder.

no planetTake, for example, Exhibit A on your right. This is a beautiful picture of a great variety of animals standing around the planet. In the center Joseph has written, “No planet is mine except home.” He showed me this picture with tremendous pride, and I, not wanting to shoot down his confidence, admired it greatly. In private I pondered how to help him to sort out the sentiment in the middle without shaming him in any way.

“Joseph, I love this picture,” I said to him. “I love it so much that I want to buy a big poster board and have you draw it again, painting all the animals. Then I want to hang it on the wall. Would you be willing to do that for me?”

What’s a kid going to say to that? He nodded proudly, and I continued. “What you wrote in the middle, can you tell me more about what that means?” We discussed it, and it meant what I suspected it meant: This planet is home to all of us. Then I kindly explained that it didn’t make sense the way he’d written it, and could he put it the other way on the big painting. No problem; he agreed happily. It was a non-issue, I am happy to say.

When he says, “I’m embarrassed!” Blue Eyes or I will say, “Embarrassed is when you’re ashamed. You don’t seem to be embarrassed. What are you really?” He’s getting better at this now; he’ll respond, “I’m mad (or whatever)!” Helping crossed wires get uncrossed is a pretty hefty undertaking, but I am thrilled to be here.

We couldn’t have arrived even at this place without all the amazing help we’ve had. I know without a doubt that one of my soul lessons was to learn to ask for help and to let myself be helped. I’ve still got a ways to go, but without this journey of autism I wouldn’t be near as far along as I am. So today I give thanks for progress, for challenges, for vulnerability and for help.

The Buddhist outlook toward challenges is to know that karma is so complicated that one can’t possibly understand why the situation is the way it is. And it includes the understanding that, for now, it cannot be otherwise. In other words, it is the way it is. Until it isn’t. Then it’s some other way.

Relaxing into that. Wishing the same for you.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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!

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

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.

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.

pirateThis morning, after I’d dropped Joseph off at school, I stopped at the supermarket to pick up a few things. I was checking the ingredients for gluten in the frozen broccoli-potato patties (yes — it has oat bran) when some acquaintances came down the aisle.

Btw, if you are friends with someone on Facebook, can you still call them acquaintances in real life?

But I digress.

So we start the small talk. “How are you?” Ally asks. “Really good,” I answer.

Long silence. “Nothing else to report,” I say, smiling.

The truth was, I’d just spent 20 minutes in my car reading a paper that Joseph’s preschool teacher wrote. This was to fulfill the special needs portion of a class she’s taking: She’d observed Joseph for 30 hours and then reported her observations in this paper.

Reading her perspective was hard. It wasn’t any earth-shattering news for me, but it outlined matter of factly some of Joseph’s more awkward areas: patting kids on the head, speaking in one or two-word sentences, having a huge reaction over a spill. I had to cry for a while before I could get myself together enough to go into the store.

So it’s God’s little joke that I then ran into this couple. I finally ended the long pause by asking how they were. Turns out she is working on a Masters, he is training for the Iron Man, and he is taking their 7 year old boy to the Strawberry Festival this weekend.

If you don’t know what the Strawberry Festival is, allow me to enlighten you: it’s where families with neuro-typical children go camping together in Yosemite. There is lots of live music (read: over-stimulation). There are lots of children (read: over-stimulation and incompetent social abilities). You camp under the stars (read: new and unfamiliar setting – impossible to sleep. And where would you keep the medication/vitamins without refrigeration?).

These are amazing, sensitive people. They know my kid has autism. They also, no doubt, knew I was choosing not to talk about it in that moment. So we smiled at each other and, with some awkwardness, just said goodbye.

***

I have a friend whose son is serving a life sentence for the murder of his wife. My friend can’t talk about it except to the closest of friends. It’s not that she wouldn’t — it’s that she feels people aren’t comfortable with the subject.

I know the feeling.

What I wanted to say to that couple was, “Well, we’re still working really hard on Joseph’s autism. We’ve made a lot of progress and I’ve been feeling quite hopeful. But just now I read this teacher’s report and it’s got me down again. It’s totally irrational, but what I really wanted was for her to write that Joseph would be ok – that he would live a happy, normal life. But she didn’t say it. No one can say it. So it’s got me feeling a little vulnerable right now. And how are you?”

It’s hard when something so huge in one’s life is also something that can’t be spoken about in a casual meeting at the supermarket.

No wonder autism parents stick together. No one else on earth could possibly get it.