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Hi Yoga Mother.

We are reading the novel Holes by Louis Sachar in English Language Arts. Joseph had some difficulty remembering some of the details of the novel when we were doing a quiz on some of the chapters. (The former aide) suggested he take the book home and have you re-read, and/or “front load” the book with him… I will send an extra copy home with him if you think reading and discussing the book would be helpful. Thanks.

I get emails like this fairly frequently from Joseph’s school.  To me they scream two words: Executive function. This is the part of the brain that’s front and center: Sitting just behind our foreheads, it’s a really, really, really helpful area.

executive-function-brown

We spent part of this past weekend going over some chapters from Holes. Sometimes I can step out of being Mom and step into the part of me that wanted to be a psychologist (I started college with that goal, but changed it when I realized how long I’d have to stay in school). When I do this, instead of being frustrated or despairing, I find it soooo fascinating to see  how Joseph’s brain works.

For instance, he read a chapter that was only a few pages long and that described a fun story that had occurred in the life of Stanley’s great-great grandfather. I asked Joseph to tell me, in his own words, what he’d read. The mumble-jumble that came forth was — here’s that psychologist’s word again — fascinating. He started toward the end of the story, jumped into an incident or two toward the beginning, and left out most of the important details.

And he was trying.

What to do? Perhaps some real psychologist could tell me how best to approach this, but since s/he wasn’t there, I took over. Borrowing on RDI’s idea of shared perspective, I lent him my more-organized mind’s perspective. Go to the beginning and then onto the next steps, I coached. End with the end.

Isn’t it funny that this has to be explained? Those of us with strong executive functioning grasp this intuitively from a very young age. But the autistic mind (and many others) has definite executive function challenges. It simply can’t do this.

So we work with executive function. When Joseph tells a story from his own life, we have him describe who, what, where, when, and why. When we talk about decorating for Christmas, or heading out to do errands, or getting ready for school in the morning, we often ask him, “What’s your plan?” We try to keep executive function in mind and to help it develop in many ways.

Slowly, slowly, oh so slowly, we see it helping. Research shows that executive function isn’t fully developed until the late 20’s in males. Time is still on our side.

In the meantime, I expect to see many more notes from school, and mistakes at home, and strange conversations, that scream executive function challenges. Bring ’em. The more we see, the more we can work with.

buddist-statueInterestingly, the meditator is coached to focus on the point between the eyebrows, and studies have shown that this area grows and develops in the brains of regular meditators. This must be part of why a meditator can generally control their emotions, regulate themselves, and concentrate well.

It also makes sense that someone without much executive function would find meditation to be a very difficult and frustrating activity. If you can’t concentrate well, how can you concentrate enough to meditate? Ironic.

Learning about executive function has helped me a lot in working with Joseph. Instead of blaming him, I listen hard to what his brain is missing. Then I work to fill in the gaps.

Maybe I should have stayed in school. Psychology is fascinating.  😉

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.

holding handsWatch them, and you’ll see it for yourself: a child or adult, with autism or another disability, holding hands with a parent or other caretaker as they walk together. Sometimes there is a version of this, where the disabled person holds the other’s purse, or elbow — but somewhere, somehow, there is a holding.

I really dislike it when Joseph holds my hand. It was cute when he was small and all the other kids did it, but now it sticks out like a sore thumb. This small gesture may as well be huge words painted up in the sky: DISABLED. This person cannot make it alone, handholding says. S/he needs someone more intelligent, more together, more able, to maneuver them through life. 

So I’ve been encouraging Joseph to let go. He dances on the boundary of independent versus dependent, and I would have him walk beside me, our four hands swinging, happy, confident and alone.

It only works sometimes. Joseph, of course, doesn’t put all that meaning into it. He likes me, likes my support, likes the comfort of holding my hand. It’s as simple as that – to him.

Independence is an issue that seems to have risen up by itself lately — independently, if you will. A few posts ago, I discussed the public bathroom dilemma. That’s been slowly shifting to the point where, some of the time, Joseph will stand outside the bathroom door while I use it, and I will stand outside the bathroom door when he uses it. Yesterday that happened twice with great success! I felt really encouraged.

Until we went to the hair salon where, for some mysterious reason, Joseph got hit with an anxiety storm. When I tried to pee on my own he started screaming – loudly! Imagine it: smallish, cute hair salon in a little house, everyone able to hear the panic-stricken screams. When I, pants down to my ankles, pulled him into the bathroom with me, he hit the mirror, hard, with his fists. Luckily, it didn’t break. He stood there and screamed, over and over again, until I gave up on the idea of calming him down for a haircut and, pulling him through the room and stammering apologies, got him out the door and into the car.

When we got home, I cried. Lots.

IMG_0380Then I texted my girlfriend three little words: “I hate autism.”

There are lots of good things happening, too. An Indian family is renting our guest cottage for a few weeks, and the 10 yo boy and Joseph are becoming friends. They are both musical and they both like to build, so it’s nice to see them hang out. We haven’t seen that a lot and it is a thrill to see it now.

Joseph is the only fourth grader who insists that his mom or dad walk him to his classroom in the mornings. When I walk him, he also usually insists that we — shudder — hold hands. A while ago, I promised him that, if he would walk by himself for a week, he could take his pick of fancy restaurants and we’d take him out to celebrate. He’s obviously been mulling this over, because he announced that he is going to do it, starting this Monday. I wonder if, when push comes to shove, he actually will. Oh, please please please God make it so. Help this soul to step up to the next level, one where he can stand strong within himself.

Attachment is that thing that wakes us up in the night, makes us slaves to our lifestyles, makes us miserable with life as it is. So, even as I long for Joseph to grow more fully into his potential, I caution myself to be detached to the outcome. That part, after all, isn’t under my control. As the Bhagavad Gita says,

Disinterested, pure, skilled, indifferent, untroubled, relinquishing all involvements, devoted to me, he is dear to me. He does not rejoice or hate, grieve or feel desire; relinquishing fortune and misfortune, the man of devotion is dear to me. Impartial to foe and friend, honor and contempt, cold and heat, joy and suffering, he is free from attachment. Neutral to blame and praise, silent, content with his fate, unsheltered, firm in thought, the man of devotion is dear to me. Even more dear to me are devotees who cherish this elixir of sacred duty as I have taught it, intent on me in their faith. 12: 16-20

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

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

Wonder of wonders, miracle of miracles!

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

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

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

Will it ever end????

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

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

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

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

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

C
T
F
D

 

Calm The F*** Down.

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

in sandFor many years, Blue Eyes and I have wondered when the right time to have the autism talk would come. The word autism has been said in Joseph’s presence hundreds of times, and yet he has never seemed to pick up on it or ask what it is.

We asked our RDI Consultant,”When should we have the autism talk?” His answer was, “When it would be helpful.”

So through the years we’ve checked in with each other to see if it would be helpful. The answer has always been no, so we’ve let it ride. Lately it became not so much a when, but an if. Maybe Joseph would never need to know his label! Maybe he would never ask.

I mean, he participates in sports with special kids. He goes to a summer program with special kids. He is the only one in his class with an aide. If he wanted to figure out that he was a special kid, it wouldn’t be hard.

My expectation of the autism talk, if it ever happened, was that Joseph would come to Blue Eyes and/or me, sit down with us and ask why he was different. We’d talk about autism and how it makes your mind think a little differently than other kids. He would ask his questions, we would discuss it all together, and the subject would be an active, dynamic one for the rest of our lives.

But that’s not the way it happened.

Two days ago, Joseph and I were getting Bowen treatments. Our Bowen (alternative healthcare) practitioner treats special needs kids for free, bless his heart, so Joseph and I were lying side-by-side in a treatment room. The way Bowen works is that the therapist makes several small adjustments and then leaves the room for a while — repeated many times over an hour or so. So Joseph and I are lying there, feeling very relaxed, and Joseph is chatting away quietly.

He gets on one of his favorite subjects: the kids who were in his summer program. He lists the ones who have Downs Syndrome. Then he asks, “Mark doesn’t have Downs Syndrome, does he?”

We’ve discussed this before, and I give him the same answer as before: “No, Mark has something called autism. You can have  a lot of autism or a little autism, and Mark has a fair bit of autism. That’s why he doesn’t talk.”

There is a short, restful silence.

Then Joseph says, “I have a little bit of autism.”

Whoa! I didn’t see that one coming. For a minute, the world stops. He knows? He knows? Wow — he knows!

After a moment I say, “Yes, you do. That’s why you’re so creative, and why you love your music so much.” Then I say, “How did you figure that out?”

Joseph changes the subject, going on to something else. I follow his lead and join in.

That’s it. That was our autism talk.

So far, at least.

Whew! That was a lot of years coming.

We’re not going to bring it up again until Joseph does, but there is a comfort in having it out there, in knowing that he knows.  It’s been an unmentioned elephant in the room, so it’s nice to have spoken it out.

From all appearances, it is not a big deal to Joseph at present. It’s just part of who he is.

And so it is. Part of the bright, funny, creative, frustrating, incredibly annoying, loving, amazing person he is.

In the first years after Joseph’s diagnosis, we focused much of our energy on the biomedical side of autism. Earlier blogs have a lot to say about Joseph’s gut issues and sleep issues, and the many treatments he/we undertook. Even our first RDI Consultant admitted that there was virtually no change in Joseph their first year together, because he was simply too sick physically to advance in any other way.

Joseph was gluten-free and casein-free from ages 3 to 61/2. He was also virtually sugar-free. We saw a lot of progress in those years. Expanded vocabulary, bowels that actually moved, more social engagement. Eventually even sleep, oh thank God.

And Then There Was Public School.

In kindergarten, I made a batch of gluten-free cupcakes to stash in the teachers’ freezer as a substitute for any birthday cupcakes parents might bring in. I gave the teacher GF crackers to keep. She gave me the heads-up when anything untoward was happening, foodwise, in the classroom, and I’d scream up some reasonable facsimile.  Happily, Joseph got out before lunchtime so we mostly didn’t have to deal with what the other kids were eating — and, sigh, the hot lunches that you can buy.

When first grade hit, it was all over before we knew it. In the second week of school,  the school secretary called: Joseph had had two hot lunches already, and when were we planning to pay for them? I have yet to see a hot lunch without gluten in it, and it always comes with a container of milk.

I got a little hysterical at this news. I couldn’t decide whether to laugh or cry that my son had, of his own accord, broken the diet that had done so much for him. I called Blue Eyes, and we decided to just roll with it. Since then, we’ve been GFCF at home but not when we’re out. Two hot lunches allowed per week. It’s worked pretty dang well.

Until recently.

It started with the chewing. He’s always been a chewer of pencils and the occasional shirt collar, but suddenly he had to have something in his mouth all the time. Hankies, soaking wet and well-chewed, would hang down from his mouth. Sleeves became soaked with saliva.

Then he started stimming more. Flapping, doing his music (humming, singing) so much that he couldn’t stop it to concentrate on his homework or his food.

But worse — much worse, if you ask me — is that he began sleeping badly. Awake in the middle of the night, awake way too early in the morning. Tired and grumpy all day long. Near tears because of the tiredness. When Joseph doesn’t sleep, I don’t sleep. It was like old times — bad.

And every morning, as soon as he’d come downstairs, he’d ask for sugar. Chocolately Koala Krisps or Gorilla Munch or yogurt tubes or candy or cookies.

As much as I adore denial, I could ignore it no longer. My son has Candida.

Yeast outbreak is very common in autistic kids. In those early days we used healthy eating, Nystatin and various natural supplements to control it.

It’s different now. Sugar and starches seem to be a natural part of public school, and we have felt powerless to stop it. There’s something about a kid who is inherently different from the others telling me that “All the other kids get to eat it!” that quickly wears down my resistance. After all, I want him to be like all the other kids.

But now it feels like do — or die. So, we told him, he is off sugar for the time being.

Ohhhh it’s hard. Every day except today (so far, anyway), Joseph has had major meltdowns about missing sugar. Little does he know that this makes me all the more determined. We’ve upped the Grapefruit Seed Extract and the Corcumin. We are starting on a new product, inspired by the folks on the blog A Ventography, as soon as it arrives in the mail.

After a few days of slogging through — no sugar and no sleep and no improvement – ugh! — we are starting to see some progress. Sleep is going better and the chewing is slowing down a bit. More than that, even: Joseph is suddenly more cheerful. Can Candida make a person act like an angry, sullen teenager when he’s only eight? I don’t know, but the change is a very welcome thing.

Joseph keeps asking about Valentines Day. Can he have sugar then? Candy hearts and all the other goodies that his fellow students will give him? I am finding it  hard to say no. I am saying that it is his choice: he may be feeling so much better without sugar that he will decide to pass it up. I am not as mean as I act; this mama’s heart simply can’t say no to Valentines treats. If we have to deal with a flare-up, we’ll all learn something from it.

The older I get, the more it registers that life is full of seasons. This season is harder than some, but truly it’s just a season. I’m holding on to the concept of effort over time: the idea that effort, consistently applied over a good amount of time, will make more difference in one’s life than almost anything else.

Body, mind, emotions…it’s all so connected. It’s a microcosm of the macrocosm, because we on this earth are all deeply connected as well. Wishing you health and happiness in all of your connections.

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

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

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

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

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

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

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

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

Not a bad way to weather the storm, really.

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

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

Kind of like an ice cream social without the social.

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

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

It was ominous from the start.

Blue Eyes and I walked in to the IEP and there, placed prominently on the table, was a box of Kleenex.

Hmmmm, I thought. This might be bad.

In a few short minutes everyone gathered round: special ed teacher, school psychologist, speech teacher, classroom teachers, aide, principal. We started with intros and some preliminary stuff, and then the psychologist took the reins.

Dr. C gave a long talk about how many kids with autism don’t do well on standardized tests. He said that the instruments he is given to measure a person’s intelligence fall far behind what an autistic person’s intelligence may truly be. He talked about how Joseph was distracted during the testing; he didn’t like being pulled out of class; he appeared to guess at answers just to get the tests over with.

Then Dr. C opened up the paperwork and showed us what Joseph had (and, mostly, hadn’t) done. He showed us how his test results compared to average results.

Eventually he came to the point: Joseph’s IQ score was less than 70.

This, my friends, qualifies him as mentally retarded.

Now, Joseph is absolutely, positively not mentally retarded. He is, in fact, a rather bright boy who processes things more slowly than most, and who doesn’t much care about giving right answers on a test.

Neither Blue Eyes nor I reached for the Kleenex that day. Everyone in the room agreed that the test results were ridiculous, and the psychologist attached a letter saying he believed the results were invalid.

And yet.

It will be a part of his record forevermore. It is one more label that we don’t need, and don’t even deserve. I am starting to get angry about it.

I brought it up to John, our RDI Consultant, and loved his comments. Did Dr. C check to see if Joseph was ready to take the tests? Did he check for Joseph’s availability? The answer to both these questions was no. Joseph was clearly resistant to leaving his classmates; he did NOT want to take the tests. He wasn’t ready and he wasn’t available.

Dr. C recommended that we never get Joseph’s IQ re-tested. He’ll never do well on these types of tests, he said. And having such a low score will guarantee us government-funded services forever!

(If Joseph continues to do well in school and with self-care, he could eventually disqualify himself from services, you see. But not with this IQ score!)

The thing is, I don’t want government-funded services forever. I want Joseph to be an independent adult, able to hold down a job and have relationships. Able to have a rich, multi-dimensional life.

I appreciate that Dr. C was looking out for us, but I don’t share his outlook. Obviously we don’t know what Joseph’s future will be. It could go either way. But if I see him as a full-fledged, self-reliant adult, I think his chances of getting there are much better.

I am mad about a system that measures our children — defines their intelligence — in such a narrow way. I am blown away by a system that monetarily rewards those who are unable to function independently but does not help those who could be self-reliant.

Mentally retarded?

Oh, okay, hand me that damn Kleenex box.

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

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

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

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

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

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

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

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

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

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

That will be the time to have the autism talk.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I was downstairs doing the dishes this morning when Joseph called to me from upstairs:

“Mom? Do you know where my gray sweatshirt is?”

“In my backpack by the front door,” I answered.

He went and looked.

As I picked up the next dish, I began to marvel at this little interchange. To an outsider it would seem so ordinary – and it is. That’s what makes it so extraordinary. Here’s why:

He called to me. For years, except for when he was screaming hysterically, Joseph spoke only in the softest of voices. You’d have to get really close to him to hear what he was saying. It was as if he didn’t have the energy – the life force – to speak with any more volume.

Mom? He only started using my name – Mom—a couple of years ago. Before that, I could be referred to in the third person (“Is Mommy going away?”), but I was never addressed directly. It was the same for everyone in his world. Can you imagine how odd it is to never hear your child call you by name?

Do you know where my gray sweatshirt is? One of the big deficits of autism is the lack of other-mindedness – not understanding that others can view things, and know things, differently than oneself. This statement shows an understanding that I can know something Joseph doesn’t.

He went and looked. He took my information, processed it, and did something with it. In the not-so-long-ago past, he wouldn’t have had such a complete thought process.

For all these reasons, I was feeling good about Joseph. He’s come so far. I was feeling happy happy happy.

Then Blue Eyes came downstairs, fear in his eyes. He asked me if Joseph had gluten yesterday and, when I admitted that he did, he told me that Joseph was really disconnected — agitated, even. Immediately I felt fearful and panicked, and I hurried to check on Joseph.

As it turns out, Joseph had a fever and a cough, which can make anyone disconnected and agitated. He spent most of the day in bed.

What got me about that little exchange with Blue Eyes was how quickly I went from my own head trip — Feelin’ Groovy — to his — Danger! Danger!

I’ve been watching head trips quite closely ever since I gave up Ambien, the oh-so-powerful sleeping pills I’d used for years. I haven’t, in the past, really believed in the devil as a personified being. A dark force, certainly, but a cunning, manipulative being that can walk and talk? Nahhhhhh.

My viewpoint, however, is changing. Sometimes, in this past non-Ambienated month, I wake up in the middle of the night unable to go back to sleep and really, truly feel I am having a conversation with Satan. Or, rather, he is having one with me.

I mean, if this Satan character is real, he would kick you in your most vulnerable spot, right? And mine, most assuredly, is Joseph. And the middle of the night is when my defenses are most down.

Just a few nights ago I awoke in the wee hours, absolutely certain that Joseph was going to be bullied, teased, ostracized, and otherwise treated cruelly by the kids in his school. I was filled with terror. A few nights before that the subject of my insomnia was incredible sorrow that Joseph doesn’t have friends, as evidenced by the fact that nobody comes over for playdates. And so on and so forth. You get my drift.

I spent the next few days after the bullying conversation absolutely freaked out. How could I protect my child from these terribly mean kids? Especially the older ones at his school, which goes from kindergarten to 8th grade.

It was a most unhappy head trip.

Then Joseph’s teacher wrote me that Joseph spent a recess blowing bubbles. The older kids chased and popped them, and Joseph laughed and laughed at their antics.

Suddenly the bullying head trip left and I got a glimmer of a new perspective. What if older kids treat Joseph with love and care because of his special needs? What if they look after him, make an effort to interact with him, because they’re good kids and because the school places so much emphasis on tolerance and mentoring. Is it possible? Could it be true?

The no-friends head trip deflated on Thursday when I went to pick Joseph up. The kid Joseph considers his best friend came over and asked, “Can I come over for a play date in two days?”

I was astonished.

Yoga teaches that levels of consciousness have thoughts associated with them. In other words, if I’m hanging out in fear, I’ll attract fearful, anxious thoughts and ideas. Therefore, to change your thoughts, Yoga teaches, change your consciousness.

I have worked on this, mostly just by increasing my awareness of it, since dropping Ambien. Whatever you call it — a head trip or a conversation with Big Red — it’s fear, which stands for False Expectations Appearing Real. Watching it closely seems to be helping. A lot. I am sleeping through the night more often, happily missing out on those fear-striking midnight conversations.

I think that, collectively, there is huge catastrophic consciousness around autism. Fear. Terror. Grief. It’s an interesting dance to process what comes up while not buying lock, stock and barrel into the things that are whispered in one’s ear when one is most vulnerable.

Peace.

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.

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!