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fair2016bThrough the years in our little family, there has been a subtle but growing attitude of autism being not okay. Blue Eyes and I — and, for that matter, Joseph’s school and doctors and therapists and specialists — have all attempted to “normalize” this kid. And it’s succeeded pretty well. This school year the last major sign of “I’m different” got removed when Joseph insisted that he no
longer wanted an aide. The school staff, bless them, respected his decision and has pretty well phased the aide out. It’s going okay — his academics have declined but we’ve never expected him to be a scholar, and his level of independence has increased dramatically. At this point you’d have to sit down and get to know him a bit before you could figure out that he’s not exactly typical.

Cause for celebration, right? Well, hold on, hoss, because we are being shown another perspective.

Blue Eyes and I just completed a fabulous 4-day playshop (as opposed to workshop) on awakening to presence. Wow! Life is different when you tune into that expanded awareness, that conscious presence, and truly grok that you embody it at all times. Many gifts were received during the playshop, and one of those was our attitude toward autism.

We were talking about how sound can be a doorway to presence: music, gongs, nature sounds, etc. The instructor pointed out how we tend to filter sound rather than allowing all sound to be in our awareness and to help us access presence. During the break, I asked the instructor, John Mark Stroud, about autistic people, who often can’t filter sound.

He said that most autistic people were highly advanced souls who couldn’t quite fit the whole “typical” scene. He said that many came in with amazing gifts — not savants, but highly gifted.

Nice, right? Well, I didn’t think so. With incredible resistance I responded that it was hard to imagine a 14 year-old in diapers as an advanced soul and that no, they didn’t come with gifts.

Later, Spirit (and Blue Eyes — thank you, honey) spoke to me about that strong reaction. I realized that, of the autistic kids I know, there truly are gifts. One is amazing at technology. Another plays the piano so beautifully it can make you swoon. Our own kiddo deeply loves, and is so loved back, by his classmates. His imagination and creativity are incredible.

As I opened to that, Blue Eyes and I had conversations about how we’ve normalized Joseph — and was that a good idea? I mean, how great is this “normal” life anyway? We spoke again to John Mark, who suggested that we tune in with Joseph on a soul level when we’re with him (and when we’re not). He suggested that we let Joseph teach us some of his gifts, that we appreciate the amazing soul he is. That we step out of the parent role and enjoy being presence together. That we open to the soul agreement we’ve had to incarnate together as a family.

For many months there has been major tension between Blue Eyes and Joseph. But that evening at home, they sat together on the couch and there was peace. Joseph’s stomach was hurting, and Blue Eyes brought him a bowl and helped him while he vomited a few times. It’d been years since Joseph vomited, and later, when I asked him how he felt, he said he’d gotten the bad stuff out and felt better.

We mentioned this incident to John Mark the next day – how Joseph had maybe eaten a bad burger at the restaurant. John Mark said that no, what had happened was that Joseph was vomiting out the toxicity that had been in our relationship with him. Wow, what a perspective.

Since then, it’s been a whole new relationship. Joseph still flaps his hands and jumps around autistically when he’s excited or creative, but it doesn’t trigger us. In fact, it seems pretty cool. I had the opportunity to give one of Joseph’s friends, another kid with autism, a big birthday hug, and I could feel his energy rising up his spine when he felt my unconditional love.

Something stiff in me has melted. Last night I thanked Joseph for coming to be with Blue Eyes and me, and he responded very simply with “You’re welcome.” Later, when Blue Eyes said good night to him, Joseph said, “Thanks, Dad.” He didn’t say for what, but Blue Eyes knew. Thanks for opening to who he is, thanks for appreciating the gift he is and the gifts he brings.

I woke at 3:00 this morning and asked Spirit why I was awake. The response was that my soul was longing to express this. Thank you for reading. I pray that, if autism is in your life, you too may open to the soul agreement you and your beloved made to be together, and that the gift of it fills your heart.

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The body is a great teacher. Mine has been a rather constant, somewhat troublesome body, with something painful happening in it almost all of the time.

Lately it’s been my right arm. Pins and needles through the arm. Massive pain through my wrist and fingers. Writing’s been hard. Sleep’s been harder.

I think that we have much more impact, and influence, on our health than we tend to believe. One night recently, Blue Eyes and I were talking about my arm dilemma and the thoughts/beliefs that might be behind it. He looked at me and said, “You carry a lot of fear.”

In characteristic old-married-person response, I rolled my eyes and told him how far I’d come in getting over that fear. But before I went to sleep that night, I put the question out to the Universe: What is this pain about?

Asking is soooo good to do. On the way to school the next morning, Joseph and I were listening to a recently-purchased CD by Staci Frenes, and we heard these words:

Your grip’s too tight.

That’s it! I realized. My grip is way too tight!

I think back to Joseph’s diagnosis seven years ago. My body and mind curled into a tight fist when the word autism was spoken. I held on through that oh-so-difficult journey, sometimes hanging over a cliff, barely able to grip the edge.

But grip I did.

sword fightRemember the old-fashioned sword-fighters? One steps up to the other, sword drawn, and says, “En garde!” I think I’ve been “en garde” for seven years: Body poised and tight, adrenalin flowing, at war with the medical industry, the school system, the naysayers, funding sources, the co-occuring conditions. At war with autism and its devastating effects. At war with my own stress level and insomnia. Even at war with the war.

Without much awareness around it, I have been wound tight, feeding off a hot suffocating tension, watching and waiting (even in my sleep) for the next battle.

And now? Joseph is nine, about to finish second grade in his typical classroom.  He is navigating his life in his own unique, amazing way. Yes, he still has autism. Yes, he still faces trials and tribulations because of it.

But.

It’s time to relax the fist.

It just is. It simply is.

I am going to open my aching fingers, spread my arms, open my heart…

…and free fall.

free fallEver wonder what it feels like
to free fall?

Nothin’ underneath you
To catch your fall
to look up at a big sky
and feel so small
Ever wonder what it’d be like, feel like, to live life
out of your control?
~Staci Frenes

Free falling is the image I am taking through my life now. It’s only been an illusion of control, after all. How much more fun it is to no longer pretend I have any. To be like a hawk gliding along, surfing circles on air currents, simply present and letting go into the experience. Not a thought about what comes next until it’s there.

Sometimes I’ll thank someone who is working with Joseph and they will respond by saying, “It’s a great privilege.”  To be honest, I have never understood this. But this morning I felt a little charge up my spine: How amazing that I get to help this special-needs kid go through life! Whereas many other parents are stuck with normal, think-inside-the-box kinds of kids, I get this really unique, creative, most unusual child to hang out with.

And I felt it. I felt how great a privilege it is to be Joseph’s mom.

* * *

My arm is getting better.

Interestingly, the soreness has made my right hand unable to grip into a tight fist.

That’s improving now. Soon I’ll be able to grip tightly.

But I won’t.

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

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

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

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

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

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

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

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

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

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

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

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

Nice talkin’ to ya.

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.

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

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

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

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

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

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

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

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

To tell or not to tell.

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

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

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

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

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

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

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

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

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

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

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

Thank you. It’s been an honor.

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

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

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

And shatter illusions it did.

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

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

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

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

Namaste.

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

The

End.

Aum, shanti, peace, peace, peace.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

For now, it is perfect.

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

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

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

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

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

You know that river that runs through Egypt — the one that we all jump into and swim around in, now and then?

DeNile — that’s the one!

I have great respect for denial.  I also seem to have a fondness for swimming in it. Today we met with our new RDI consultant, and I discovered that I’d been floating in that river yet again.

But before I explain, let me take you back a couple of weeks.

Two weeks ago, our amazing occupational therapist gave us a dozen activities to do with Joseph — activities that focus on bilateral (using both hands in a way that they coordinate with each other) movement, and movement that crosses the midline. We’ve been conscientiously doing them almost every day.

Suddenly Joseph became more competent in swimming, drawing and numbers. He started spelling out words on his own. When we drove in the car, he insisted that I roll the windows down so that he could shout, “Hi!” “Hello there!” to passersby — and laugh merrily when they responded. So it’s been a fun two weeks.

On Monday Joseph started insisting that he was ready for kindergarten. I think he is noticing that, while he is almost 6, the other kids in preschool are 3, 4, and 41/2.

Well, it just so happened that, on Tuesday morning, I had an appointment scheduled with the principal/special needs coordinator of our local elementary school. Among other things, I mentioned Joseph’s academic progress and his desire to go to kindergarten.

She was all over it. “Let’s get him in!” she said enthusiastically. “No time like the present!”

On Friday, we are going to visit one kindergarten class for an hour. We’ll visit another one next week sometime.

So I’ve been feeling pretty good about this — feeling that Joseph is ready and willing, feeling that it would work.

Then John came. He is our RDI consultant.

He is new (to us). Kelli, our former beloved RDI consultant, has moved on to different work. So John went to Joseph’s preschool today and observed for 1.5 hours. He came over late this afternoon, and we talked.

He couldn’t say too much about the improvement-needed areas with Joseph in the vicinity, but he did manage to get in one concept: Joseph is not presently other-minded.

Other-mindedness. Ahhhhh.

Other-mindedness is one of the biggest deficits in autism. When someone doesn’t have it, it shows up as an inability to borrow someone else’s perspective, to understand that other people think differently from oneself. It is an inability to consider what someone else might be thinking.

Other-mindedness is the foundation of a good friendship or a good marriage. Or maybe even a good life.

In other words, it is a big one.

Kids start developing other-mindedness around the age of 1 or 2. John talked about working with a 12 year-old who most people couldn’t even tell was on the spectrum. John and this kid were running to a window to wash it together when John fell (on purpose) and began moaning terribly about his hurt knee.

The kid looked back and asked, “Are you all right?” Then he ran the rest of the way to the window and began cleaning it while John lay on the floor, moaning in pain. His mother, watching through a see-through mirror, couldn’t believe it.

It’s a foundational thing, a fundamental building block. Without it, we are painfully lost in most social situations.

Jesus showed very advanced other-mindedness in Matthew 12:25: And knowing their thoughts Jesus said to them, “Any kingdom divided against itself is laid waste; and any city or house divided against itself will not stand [emphasis mine].

I am not grieving about this deficit. Nor am I even beating myself up about not noticing it (consciously) before. Denial, after all, has its place.

I just feel extremely grateful that it has been pointed out to us and that we have the tools and support to get it going. We are in good hands with John.

John had Blue Eyes and me running around the living room with him as he tossed a ball to one or the other of us. We never knew who would get it and had to watch carefully to see what he was thinking.

I can see that cultivating other-mindedness is going to be a tremendous step forward for Joseph. I am excited to begin.

I can also see that, though Joseph is right on target academically, he still needs some help socially. Maybe it’s not time for kindergarten. Those kids are really sophisticated socially.

I don’t know. But I’m getting used to not knowing. It’s almost getting to be a comfortable place to hang out.

One of our earlier RDI objectives was about learning from past experiences and applying those lessons to future ones. If I was to do that  in this situation, I would realize that the right things (working on bilateral movements, a new RDI consultant) have come along at the right time. All I need to do is to stay open, to watch for the signs, to listen for the whispers.

It’s worked before, and it’ll work now. God is guiding me no matter where I am or what I’m doing. He’s there with me, always. He is in my corner.

Even when I’m just floating comfortably in DeNile.

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!