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We’re not necessarily doubting that God will do the best for us; we are wondering how painful the best will turn out to be.
~ CS Lewis

Painful is how I would describe life as an autism family. I hit bottom around the pain (again) just over a week ago. Joseph is nine now, and the sweet, cheerful little boy has been taken over by a rebellious, yelling, smart-ass, sometimes hitting kid who is almost as tall as I am.

Forget the blues: I had the blacks. I felt swallowed up by a deep, dark hole of despair. Bruce Springsteen sang in my head: “Had a wife and kids in Baltimore, Jack. I went out for a ride and I never went back.”

That’s what I wanted to do. Sometimes I wanted to take my husband with me and sometimes I didn’t, but I definitely wanted to ditch the kid. Hop in the car, drive away and never come back. Such a sense of freedom, of liberation, that thought gave me.

Well, on Thursday I did hop in the car and drive away, but it wasn’t quite that dramatic. I was only gone four hours and my friend, Terese, did the driving. It was where we went and what we did that made the all the difference.

We went to session one of a five-week Love and Logic course.

In this classroom, other parents were struggling. Not only parents with autistic kids, of course, but all the parents. Two of the kids were getting emergency crisis intervention. One girl had just called her mom a fat pig who didn’t know anything. Another was getting cyber-bullied. I heard stories that made my curly hair straighten.

Then — ah, then! — we were given tools. It takes two to engage in an argument, we were reminded. If you’re playing tug of war with your kids and you let go of the rope, the game is over. We were taught how not to engage in shouting matches, in power struggles, in efforts to control. And to do our part with love and empathy.

We were reminded — and this one was huge for me — that the reason we decided to have kids was because it would be fun. Raising a family is meant to be fun. AND kids need to make contributions, just like Mom and Dad do. Though Love and Logic doesn’t often use the the word responsibility, it includes everyone doing their part.

On Friday, Joseph and I were talking about lifeguards. Joseph is very interested in lifeguards and the rules around pools. He asks questions like, What would happen if I ran at a water park? What if I was rough with a little kid at a public pool? I was answering logically, saying that the lifeguard would get him in trouble. If he was really naughty, I told him, he’d probably have to leave the place.

Well, this got Joseph anxious and he started to yell. Loudly. And rudely: “STOP TALKING ABOUT LIFEGUARDS! I DON’T WANT TO HEAR ANY MORE ABOUT LIFEGUARDS!”

The old Yoga Mother would try to calm him down. Or maybe even yell back at him. The Love and Logic mother, though, immediately and intentionally went brain-dead. This brain-dead moment stops me from reacting, gives me a second to reclaim my center.

Then I didn’t say anything. I could have used one of the many brilliant Love and Logic one-liners (“How sad.” “Don’t worry about it now.” “I love you too much to argue.”), but it’s much more natural for me, with my yoga background, to exhale loudly. Not sarcastically, not meanly –just a loud sigh.

And that was it. With my sigh I let go of the rope, and the conversation was over.

Replay scenes like that a dozen times a day, and you’ll get a sense of how Love and Logic is impacting our lives.

I’m realizing that I’ve been too flimsy around the boundaries, not modeling the calm, centered person I want him to become. Acting more like a drill sergeant (“Clean this up! Now!”) than a consultant (If it was me, I’d do it this way — but it’s your choice.).

What I know for sure is that it hasn’t been much fun. And now it is again. The autism is still there, but I’m realizing that we can have fun anyway. Saturday eve we went to a waterpark — what a blast! Yesterday we went on a hike with friends, and Joseph copied his younger friend by crossing funky, shaky bridges over the creek without fear. A new milestone for my usually timid young man.

IMG_2745Bottom line? I believe God wants us to have fun. It adds such a richness to life, and then we get to share that joy with others. So what the hell, let’s have fun — and, if we’re not, let’s figure out why and make the changes needed.

It’s funny, in a way. If we hadn’t lost our RDI Consultant, I don’t think I’d have taken this Love and Logic course. John was such a strong support for me that I would have struggled gallantly on. But with him gone, I’m having to fill in the gaps — and it’s turning out to be really good for me, for us.

Even lower bottom line? Even though, as CS Lewis said, God’s best is painful, it’s important to remember that it’s also the best.

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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.

Joseph burst through the door yesterday, excitement on his face.

“You won’t believe what we saw!” he exclaimed.

“What did you see?” I asked.

“I saw — we saw — we — I — we saw a, um, a squirrel. No! Um, we saw a little chimpanzee!”

He’s been watching the movie Summer of the Monkeys, so I figured he was borrowing some of their script and trying to adapt it, more or less, to his life. It was very cute, and it was fun to see him so expressive, stammering around with personal pronouns and using his imagination. In the movie, the main character is a boy who spends quite a bit of time out in nature by himself. Suddenly Joseph is feeling better — and braver — about being alone out on our land. Nice!

The first month of this summer was hectic. Joseph was in a special program for high-functioning kids who might regress if they didn’t have extra schooling, so he was up early every day, catching the short yellow bus at 7:30am and getting delivered back after lunch.

He picked up some really bad habits at that program. Summer school recesses had him interacting, not just with his class, but with kids like the non-verbal ten year-old who still wears a diaper and makes odd sounds. Joseph will screw up his face to look just like this kid and then mimic the sounds — perfectly, I’m sure. Which would be okay in private, but he’ll also happily do it in public. So we’re down at the hotel breakfast room on our vacation and he breaks into a loud rendition of “Unnhhh, ughhhh, ughhhhhhhhhh!”with a screwed-up face. Naturally, other people take notice and try not to stare at the severely-impaired kid. But they do anyway.

Sigh. Perhaps this was the last year for Joseph to do the summer program.

Joseph does pretty well academically, but math has been difficult. A friend referred me to a program called Addition in Minutes, which we’ve been spending 20-30 minutes on daily. Joseph is finally learning his math facts (e.g., memorizing), and I am experiencing the lure of homeschooling. To get how my kid learns, to tailor things to that. To take our time when we need to, to hurry past when it’s easy. To sit down and study as it fits into our rhythm. It has many good pieces.

Before Joseph even started school, I looked seriously into homeschooling. An Education Specialist talked me out of it, though. She maintained that Joseph needed as much social practice as he could get, so public school would be the way to go.

I trust Joseph. If he is feeling good and confident at school, we’ll continue there. If and when things go asunder, it’ll be time to have another look at homeschooling. Meanwhile, I’m much enjoying our math time together. It brings us closer.

RDI puts a lot of emphasis on apprenticeship. Most kiddos naturally understand that Mom and Dad are guides and teachers, and they are (generally) happy and eager to learn. Not necessarily so with kids on the spectrum, so we actually work on helping our kids become apprentices. I’ve noticed a nice shift in Joseph this summer, where he is more willing to listen to me and learn from me. Simple things, like how much 3/4 is on a measuring cup, or harder things, like how to fix the wheel on the ottoman.

chickenJoseph is really eager to have a farm. We are going to start (and possibly end) with half a dozen chickens, which will be another great way to work on apprenticeship. This Saturday we’re going to visit a couple of friends who already have chickens, and, as adults, model what it is to be in apprentice mode ourselves. We’ll build the chicken coop as a family, and, when the chooks arrive, Joseph will play a big part in their feeding and care. I’m feeling pretty excited about the opportunities this endeavor will create!

So all in all, a good summer. As they say in RDI, good enough. Not perfect, but good enough. I am content with that.

Have you noticed that it’s easy to trust when everything’s going well? That’s when you feel there is a loving God. That’s when you know the Universe is on your side, and you are in the “zone.” Then — LOOK OUT! — a wrench gets thrown in the works. And suddenly God is not so loving, the Universe is out to get you, and that zone is some far-off place that has no relation to you.

Welcome to my week.

Blue Eyes and I have been quietly celebrating a thinning fog in Joseph’s brain. No one other than his mother(!) has ever called him smart before, but in the space of a few days one of his teachers told me he was intelligent, and another said he was obviously smart. This is, I believe, a direct result of that thinning fog. Joseph is thinking more clearly, speaking more lucidly, and understanding more quickly. So yeah, that loving God was showering his favor on us.

Then came not one, but two, wrenches.

First was our beloved RDI Consultant. He has a disability that he has courageously battled since he was a child. He called the day before our consultation to tell us the disability was looming large in his life and that he needed to go for some major surgery. Said that this may be the end of his role as a Consultant.

If you haven’t had someone come in and make a huge difference in your autistic child’s development, you may not get the impact this had on me. First I cried. Then I prayed — hard — for trust.

Oy. Trust. My whole life I’ve had a hard time trusting God. Trusting that there is some grand plan in execution beyond my limited vision. So I cried and I prayed and I cried and I prayed.

A few days later, I heard Joseph in his room at 4am, crying. When I asked him what was wrong, he said his left leg was killing him. Blue Eyes woke too, and together we massaged his leg, gave him pain killers, applied heat, and tried whatever else we could think of to help ease the pain.

Joseph was in agony. He couldn’t get off of his bunk bed, so Blue Eyes had to carry him down, Joseph screaming with pain. We had a trip to the doctor’s, a trip to the hospital for x-rays, and a later trip to the hospital for an ultrasound that evening. In between visits Joseph (and I) cried about this mysterious, vindictive pain.

I had to drive directly from the evening visit to the hospital to meet someone for a work consultation. My head was NOT in the right space to meet with this man, and I didn’t do my best work. So I’m driving home, completely exhausted, and — guess what? — praying, once again, for trust.

That’s when God spoke to me. This, s/he said, is how one builds trust. Facing frightening challenges and actively trusting again and again. Day by day, or moment by moment.

Then the radio started playing  a song:

Strength will rise as I wait upon the Lord. Wait upon the Lord, I will wait upon the Lord.

Whatever caused Joseph’s pain, it has cleared up now. The tests found nothing. The doctor is guessing a twisted muscle.

Whatever else it was, it was also a  great gift for me. In the hospital waiting room that morning, I felt an overwhelming urge to let all my girlfriends know what we were facing. So I texted them. They responded with moral support, practical help, and many prayers. I thought back to seven years ago, when we got the autism diagnosis and I told almost no one. I was not ready to ask for, and receive, that much help. I was not ready to be so vulnerable.

love GodKahlil Gibran says that, even as love is for our growth, so it is for our pruning. The journey of autism has pruned me — cutting off everything that was not essential so that newness could grow and flourish. Now I can say, help me! I can lean on others when I am not strong.

And a loving God, a Universe that is on my side, and a zone that is readily accessed with an open heart are all reminding me that I can relax. All is happening as it’s meant to happen. I don’t know what that is, but for my part, I can trust.

More and more, I can trust.

When Joseph got his autism diagnosis at the age of two, they might as well have diagnosed me with anxiety at the same time. Anxiety has become such a habit for me that I now have what I call an anxiety slot. It seems that this anxiety slot needs to always have something in it, so if Joseph’s situation isn’t making me anxious, my mind easily puts something else in the slot.

But the spiritual path is a path of increasing awareness. The call is to look intently into the mirror of one’s consciousness and not shy away from the blemishes. So, yes, I have developed the habit of anxiety. And now it seems like the time to work on it. I can see my new yoga series: Yoga for Anxiety. It’d be a big hit, don’t you think?

That  being said, we are experiencing some wonderful breakthroughs with Joseph! Blue Eyes took him to New Zealand (Blue Eyes’ native land) for two weeks in October, and I stayed home. Joseph came back with a deeper bond with his father,  a new openness for adventure, and an appreciation for his extended family.

374567_10151146801606586_881625458_nThis was great, coming on the heels of Thanksgiving, where we recently gathered at my brother’s house with about thirty of his American relatives. Joseph was excited to go — amazing in itself, given that he’s dreaded past gatherings. And he had fun!

Joseph needed the constant scaffolding of being with Blue Eyes or me, but our RDI Consultant assures us that many of his kids would be happy wandering about in their own world, not needing anyone. So this was a good thing. Joseph’s need for us included emotional comfort and perspective-borrowing —  a wonderful thing for a child with autism to look for from people!

It was interesting to look at the impact Joseph makes on my larger family. He reaches into people’s hearts and,  simply by his very being, he helps them to open. He’s been doing that to me for years. There’s something so special about connecting with an autistic child.

Blue Eyes and JosephBack on the home front, Joseph’s figured out a way to tease Blue Eyes so that he gets chased all over the house. Once he is caught, he is tickled. This can go on for hours. Joseph can’t wait for Blue Eyes to get home in the evenings so that they can play this game. In the past, Blue Eyes has been pretty much ignored, and now Blue Eyes says it’s actually fun to come home from work.

The happiness in our house is palatable. Wow.

Connections have been happening, more than ever. I love shared things! Shared smiles. Shared emotions. Shared conversations. Shared snuggles. Precious, precious times.

I have been wondering what the flip side of anxiety is. Contentment? Faith? Trust? Surrender?

For me, in this journey with Joseph, it seems to be hope. I used to hope for recovery, and then I shut down around that and stopped hoping pretty much altogether.

Now I want to cultivate hope again. I hope for continued intimacy, continued growth, and continued breakthroughs.

It’s been said that many of the great achievements of the world were accomplished by tired, discouraged — and, may I add, anxious — people who kept on working. That is a really good adage for us autism parents.

The thing about hope is that it’s a risk. To hope is to risk pain. But to live a life fully open and fully lived, we must risk. We must hope. We must continue on.

And every now and then we get some sweet, blessed, blessed encouragement. Yea.

Wishing you strength, courage, and hope on your journey.

Today’s fathers are sure different from mine. Incredibly intellectual, my dad never reached out to hug me, or touch my hand, or to do anything affectionate in that way. Conversations with him consisted of his eyes looking at me over the newspaper, or whichever professional magazine he happened to be reading. Playing was something children did with each other.

That’s what last generation’s fathers were raised to be like. Maybe that’s why I never tire of seeing a father being tender or playful with his children. Dads today are so much more in touch with their hearts — so much more willing to meet a child where they’re at.

Blue Eyes was going to be an affectionate, hands-on father like that. But one of the most difficult aspects of autism for us parents is how it’s a one-way street: you put out all kinds of love and affection, and nothing comes back. Blue Eyes was sad when he’d come home from work, a whole day away from his son, and there would be no light of recognition in Joseph’s eyes — no smile saved just for Daddy. No nothing.

Ouch.

Neurotypical kids naturally take the apprenticeship role, seeking to learn from their elders, trying to be just like them. This is a great way for dads to interact with their kids, and Blue Eyes, a builder and a craftsman, looked forward to sharing his expertise with Joseph.

But autism drives a wedge in the master-apprentice role. Autistic children are often not interested in learning, in expanding their worlds. Comfort is found in a small world — a narrow, predictable world.

Thanks to various interventions and a lot of grace, the one-way street with Joseph has substantially more two-way traffic than it used to.  We have also worked hard on developing his apprenticeship role, and it’s coming along nicely.

The Waldorf system maintains that the mother holds the child, literally and figuratively, until s/he is seven. Joseph turned eight this spring, and it’s become apparent to us that Blue Eyes needs to step in more. Fearful by nature, Joseph will become even more of a mommy’s boy if Dad doesn’t take on a more prominent role.

Though Joseph’s had a lot of recovery, there are still many autism-related obstacles that Blue Eyes has to wade through. John, our RDI Consultant, has been working with my guys on how to do stuff together, like build simple things. I’m proud of Blue Eyes for letting go of past hurts and rejections, and moving forward to create a close relationship with Joseph as he is now.

It’s a funny thing: Every time I step out of the picture and the guys do something together, Joseph’s energy is different. He thrives under his dad’s attention. Blue Eyes challenges him more — he needs that — and models how to be a whole, healthy man. Things I can never do.

So here’s to dads: what a priceless role you play. Kudos to you, Blue Eyes, for your resilience, your love for your son, and your willingness to keep showing up in his life no matter what. You’re the best.

Happy Fathers Day to all you amazing men, and most especially to those of you who stay in your kids face when you’d rather not; for those of you willing to do the hard things; and for those of you who never, never give up on your special needs child.

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.

Our RDI Consultant taught Joseph how to use a bow and arrow today. As Joseph held the bow and pulled back the string, he felt the tension in it and said, “OWWW!”

John asked, “Did it hurt?” and Joseph answered, “No. I was scared.”

This engendered a conversation between them about how you say Ow! when something hurts and how you do something else, like inhale audibly, when you’re scared.

These are the kinds of things you talk about when your kid has some wires crossed in his mind. John calls it disorganization — which, when you think about it, means you’ve got things in the wrong place and it feels chaotic. A pretty good description for what happens inside Joseph’s mind at times.

For years I’ve tried to distinguish for Joseph the difference between hearing something and seeing something. The other day he said he’d heard thunder and seen lightning, and I thought, “Eureka! It’s finally connecting!”

So nice when, after much effort over time trying to flip the switch, the light finally shines.

There’s still much to work on in terms of getting disorganization organized. For instance, Joseph might call from downstairs for Blue Eyes, asking where he is. Blue Eyes will answer and his voice will clearly be coming from up the stairs, but it’s not clear to Joseph. He’ll turn around and start looking in the wrong place.

Or I’ll have Joseph’s clean laundry on his bedroom floor, folded and ready to be put away. When I bug him to put his laundry away, he’ll take it and put it — sigh — in the hamper.

I see disorganization a lot when I watch Joseph in swim class. Take yesterday, for example. Joseph’s swim teacher gave the kids some instruction about how they were forming two teams with three kids on each one. She touched the heads of each kid as she said their names. “Mark, Joseph and Lita, you are team one. You swim to the other side and back, and then tag your team member two to go.”She chanted, “Ready, set, go!”

The other two kids swam off quickly. Joseph just stood there. He looked at the teacher, confused, and asked, “Am I on team one?

Anyone can miss things now and then, but this happens a lot with Joseph.

Disorganization. It must be really hard to have the wires crossed within one’s brain. I would feel like a stranger in a strange land if I couldn’t grasp concepts as quickly as others. Though not a neat freak, I really dislike it when my life is disorganized. I can’t imagine how frustrating it would be if my brain were that way, and there wasn’t a thing I could do to change it.

No wonder Joseph doesn’t hold conversations at length. He does try, and often times we have to unscramble a few things to make sense of what he’s saying. He said something almost backwards the other day, and our respite worker, with infinite kindness, restated it correctly for him. This is the value of having experienced people around him — people who understand the problem and who work with it with patience and care.

What I hope and pray for is that Joseph gets this: A processing disorder is not the same as being slow or stupid. In the future, I want him neither to accept others’ abuse of him for this nor for him to abuse himself.

At least the brain experts have changed their mind about when the brain stops developing. Whereas they used to think that nothing much changed after childhood, they’ve decided that one’s brain can continue improving throughout its existence. Very kind of them to have proven such a thing as Joseph turns 8.

We’ll continue to sort through the disorganization as best we can. Grateful for the respite support we get, because it can be exhausting trying to help a disorganized kid act like the majority of relatively organized humans on this planet.

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.

The Way of the Peaceful Warrior is one of the books that turned me toward the spiritual life in my twenties, so it was with pleasure that I accompanied Blue Eyes to a talk that its author, Dan Millman, gave recently.

I found that every time Dan discussed being a warrior, my mind flashed on autism. When he talked about life’s waves crashing over us and pulling us down, I saw how it happened to me with autism.  And when he spoke of the concept of effort over time, I perceived it in light of Joseph’s, and our, journey with autism.

You know how you attend a talk or read a book and, if it’s a good one, you leave with one or two gems that provide clarity and direction for you? Effort over time is such a gem for me: the idea that effort, consistently applied over a good amount of time, will make more difference in one’s life than almost anything else.

I think about all the effort we put in to help Joseph’s gut problems (chronic constipation, leaky gut, candida). For 3 1/2 years he was gluten- and casein-free. He took medications and supplements, sat in oxygen chambers, suffered through glutathione shots, and –worst of all — screamed bloody murder during every-other-day enemas. It was pretty much hell on earth for all of us. But it was this effort over time that has made him the healthy boy he is today.

Then there’s RDI, the behavioral intervention we’ve been involved with for about five years. One of RDI’s slogans is It’s not a sprint — it’s a marathon. In other words, effort over time. Regular homework assignments for us parents, which include reading, learning, creating video footage of us working on objectives with Joseph, and constant incorporation of the principles into daily life. Endless discussions with our RDI Consultant, who runs the marathon with us and hands us water bottles and power bars to keep us going. Effort over time for sure.

There’s also nasty stuff, like the fact that I got so traumatized by Joseph not sleeping for four years that, three years after that difficult period, I still can’t sleep well myself. If Joseph gets up in the night to use the bathroom and I hear him, adrenaline still shoots through my body and I wake up, terrified. Recently I asked Blue Eyes what else I could do to resolve this problem and I loved his answer: Effort over time.  Oh yeah. Patience, Yoga Mother. The trauma didn’t come in a day and it seems to not be leaving in a day. But don’t give up — it’s effort over time.

Joseph being goofy

Joseph has come so far that it’s like a good dream. Earlier today I spoke with the mother of one of his classmates, and she said her daughter has a huge crush on Joseph and wants to marry him. Could I have imagined anyone saying this four years ago, when Joseph would rather stim than interact with someone? Absolutely not. It’s due to effort over time — ours, his, and the support team we’re surrounded by. Oh, and grace. Lots and lots of grace.

I know that some of you who read this are early on the autism journey. You can’t know if your effort over time will be worth it, and believe me, I know how much effort it is. It drains your life force, ages you beyond your years, takes away your life as you knew it, and threatens your sanity. But really, what choice do you have? Amazing effort now might help your child reach his or her full potential, and if you don’t do it, you’ll never know. Today is Superbowl Sunday and I watched a little vignette of huddles of football teams getting motivated before previous Superbowls. In one huddle the quarterback said, “If it works, it works. If it doesn’t, it doesn’t. So let’s just go and do our best.” Indeed. What else can you do?

How then can we approach autism, or any major trial in our lives? Effort over time, doing our best, and — if I might add one more concept — letting go of the fruits of our labors. We can control our efforts but we can’t control the results. We simply can’t, and it’s crazy-making to pretend otherwise.

I love where Joseph is now — and yet, as his peers grow older and more sophisticated, he well may not be able to keep up. Crushes on him may turn to laughter at him. I will continue my effort — that’s my business —  and I will do my best to let go of the results, because that’s God’s business.

To be honest, I’m not so great at letting go; I just plain like to be in control. So I continue to work on it, hoping to land in the body, mind and soul of the Spiritual Warrior I strive to be. This Warrior has great focus, puts in major effort over time toward a noble end and, at the same time, lets go of what that end might be.

Will I ever really become that Spiritual Warrior? Perhaps the effort alone will transform me into her. Then again, perhaps it won’t.

I’ll just do my best, pray that it’s blessed, and let God take care of the rest.

I’ll wager a guess that parents of typical children look forward to school Christmas concerts. Not us. Blue Eyes and I have been dreading this year’s concert ever since last year’s took place. We called our RDI Consultant, John, to talk about it:

YM: We’re worried about Joseph’s school concert. Last year, Joseph stood on stage and flapped his hands like a wild man. The other kids sang and did motions to the songs, and Joseph flapped. He never sang, not even once. He looked soooo autistic.

John: He IS autistic.

YM: I know, I know…

John: Tell me more about the flapping. Was he nervous up on stage?

YM: Not at all. He knew we didn’t want him to flap. He looked us in the eye, grinned a wicked grin, and started flapping.

John: Ah! So he was doing it to bother you guys. Sounds like a typical kid to me.

YM: We’re thinking to let him do the dress rehearsal and call it done. What do you think?

John: I say, don’t leave out this experience for Joseph just because you and Blue Eyes will be uncomfortable. Experiences like this are really valuable for him. If you guys can live with the discomfort, I think he should do it.

*****

Sigh. Sometimes you have to use the psychic Samurai sword to slash away your own wishes and do something for your kid’s growth.

We spoke to Joseph’s teacher about our concerns, and she got the whole music team on board to brainstorm. They ended up putting an egg shaker in his hand. At the concert on Tuesday night Joseph was busy keeping the beat, and sometimes he even sang. No flapping; not even one little wriggle of the hand.

Have you ever noticed that, if you’re willing to be uncomfortable, you will often be excused from the actual dreaded experience?

The concert was therefore, in our eyes, a huge success. And that wasn’t the only high note of the week.

Joseph has a crush on a girl in his class named Fiona. He sure knows how to pick ’em — she is a cutie. On Monday Fiona came over for her first playdate.

When Joseph was maybe four years old and I was trying to interact with him, we’d play this game where he’d run into his room and slam the door shut. I’d bang on the door, protesting, and he’d laugh like crazy.

This was called “interaction” at that phase of his development. The trouble was, when potential friends came to play, Joseph would do the same thing to them, expecting them to come bang on the door. But, of course, no one ever knew they were supposed to do that. And Joseph wondered why they didn’t. It was puzzling on all sides.

I resigned myself a while ago to the fact that I might always be a part of Joseph’s playdates, because he may not be capable of coming up with things to do with a friend, or of even remembering to include the person in his activities.

It was different with Fiona. They ran down to the play structure and, well, played. After a while they came back for snack. Then they went into the hot tub and played some more. When it was time for Fiona to leave, she was sad. She’d had such a good time.

Playdate #2 took place on Wednesday and consisted of John’s two boys. John was blown away at how Joseph took the initiative, suggesting they kick a ball around together and then play some musical instruments. They went to a store together and Joseph clowned around trying to climb into a mini-refrigerator, to the amusement of some customers. John was overwhelmingly enthusiastic about Joseph’s progress.

Playdate #3 happened yesterday. Joseph got invited to Carl’s house. When I picked him up afterward Carl said, “It’s about time my best friend came over to play.”

Best friend??? Be still, my beating heart.

John has recently graduated a girl from the RDI program, pronouncing her recovered. She has friends seeking out her company. She is understanding subtle social nuances. This is a huge deal. Our regional agency, the one that funds interventions, told John that they’ve never had one of their kids come so far. They want to make this girl their poster child for what intervention can do.

I try not to fan it, but having had a week like this one, and hearing John’s enthusiasm for Joseph’s part in the play date, and knowing that it’s possible because it happened to someone else, the quiet flame in my heart that whispers, “Maybe Joseph could recover” is burning a little more brightly just now.

Sometimes I get a glimpse of what Joseph would be like fully recovered. He’s such a neat kid with autism that I can only imagine how amazing he’d be without it. With the ability to process more easily, to communicate more fully, to interact more deeply.

Trying to breathe and be present. To be okay no matter what. And, really, I am. But that doesn’t mean I don’t hope. Because I do.

Most of the time I’m not even aware of the quiet, hopeful flame in my heart anymore. But it burns steadily on, through rough times and regular times and amazing times, and I appreciate that.

May the flame in your heart, whatever it burns for, rise up and warm you during this holiday season.

Blessings.

I had a Skype session yesterday with John, our RDI consultant. I took notes as he spoke about the playdates Joseph’s been participating in. Somehow the subject of weirdness came up, so I jumped in with something that’s been bothering me lately:

Joseph likes to be weird.

Howling on the playground

We’ll be walking up to his classroom in the morning, students of all ages around us hurrying along, and Joseph will suddenly stop, look up at a pretend moon, and howl.

At full volume.

Kids turn and look.

I’ll whisper, “Joseph! If you do things like that, the kids will think you’re weird. They won’t want to be your friend!”

Joseph will laugh delightedly and repeat, sing-song like, “I’m weird. I’m weird.”

John listens to my concern, his face imperturbable. Then he tells me that, when it’s a full moon, he goes into his backyard and howls at it. John lives in a suburban neighborhood, and all his neighbors recognize his howls. His wife hates it, his children love it, and every full moon he does it.

Joseph is just weird, he tells me. He sees him growing into a teenager who is funny and smart, who can be really goofy with his friends.

All along I thought this was autism. This ability to happily be different from other people — to try, even, to get them to think he’s weird. John’ says it’s not autism. It’s Joseph’s personality — autism or not.

This is just another reason that I love RDI. Having someone to check in with on the little things and the big things. Getting an expert’s perspective — especially an expert who knows our boy, and our family, really well.

Not just any expert, either. An expert on RDI, which stands for Relationships Development Intervention, and which focuses on development in dynamic real life — not in some contrived, forced situation, like another popular intervention.

For years I’ve been coveting the RDI stage where Joseph could be in a dyad, playing with another child under John’s tutelage. We had to get all the necessary developmental skills in place before Joseph could qualify — how do you play with another person if you don’t understand how to co-coordinate an activity, for instance — and now we’re finally there! There are many stages to a dyad, and John is positive about how well Joseph is progressing through them.

Some people take their kid off of gluten and the autism goes away. Some people use homeopathy, or glutathione shots, or oxygen chambers, or another of the million and one cures for autism — and suddenly they have a neurotypical kid. That hasn’t been our path. A lot of the things we’ve tried have helped to some extent, but on our long, slow route to helping Joseph achieve his full potential, RDI stands head and shoulders above the rest.

The closest analogy I can give for RDI is Annie Sullivan, Helen Keller’s teacher.  Like Annie, RDI comes right into your life, reaches into a child’s isolated world and gives him/her meaning, connection, and a way to grow.

To stretch this analogy just a little further, RDI actually coaches parents into being their child’s Annie Sullivan. The intervention is parent-based because the parent-child relationship is, or should be, the strongest relationship there is.

This can be frustrating. In many ways I would  prefer to let our RDI consultant, John, do the Annie Sullivan thing. The ego wants the easy way out, after all.

But the soul seeks to grow. Despite all the hard work and the many times I want to give up, I am coming to understand much from RDI about autism and how to help Joseph with his particular challenges. For this I am eternally grateful.

mud hat

I love that John thinks about the teenager Joseph will grow to be. That he sees him having friends in this future time. He coaches us to raise Joseph to be a good husband someday, and I love that he doesn’t limit Joseph from friends and marriage because of autism.

I’m starting to delight in my son’s weirdness. It’s an ability to think and behave outside the box. It’s creative and silly and fun. Like John, I’m enlarging my vision to see Joseph’s future friends admiring his weirdness, enjoying being crazy and funny together. And maybe, further out, a wife and children with whom he can be his own howling self.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

Earlier this week, I picked Joseph up from school and we did the hour’s drive to the RDI consultant’s office. John had set up his neurotypical boys to interact with Joseph in a playgroup-like setting.

(Some kids get picked up from school and taken to soccer practice or music practice. In my mind, I refer to our after-school trips as “normal practice.” But I digress.)

We go into the office and the first thing John wants the kids to do is play a board game together. Now, Joseph is not a board game player. There is something about board games that he doesn’t get. So Joseph looks at the game and whines, “I don’t like board games. They’re too hard!”

It’s Chutes and Ladders, one of the easiest games in the world. I pull John aside and say,  “Joseph doesn’t do well with board games.” I’ve been cogitating on his answer ever since. He said:

“I don’t want this to be another thing that’s left out.”

When we have babies, a lot of things get left out: nights out, adult conversations, a full night’s sleep, sex — that sort of thing. But eventually things get more or less normalized and there isn’t such deprivation.

Not so with autism. Things get left out. Forever.

Recently some friends invited us to their ongoing couples’ group. They meet every other Thursday night. They bring the kids, set them up in another room with their homework and a video, and go do their thing separately. “Come along,” they said. “It’ll be great to have you.”

Sure. Take Joseph to an unfamiliar environment, set him up in a room with kids he doesn’t know, and leave him there to enjoy himself. Ha! Only in our dreams.

Another thing left out.

Blue Eyes is a builder. He works with a friend whose 3-year old boy recently threw a long tantrum because he couldn’t go to work with his dad to build with him. Blue Eyes thinks the time is near when they’ll have the kid come for a couple of hours to bang some nails and “help out.”

Blue Eyes has tried to interest Joseph in building, but Joseph feels incompetent and uncomfortable, and he shows no interest. It’s yet another place where Blue Eyes and Joseph don’t connect.

Another thing left out.

Recently we had extended family over. There were around fifteen people at our house. Joseph spent a large part of the time off by himself, telling me, “There are too many people here. It makes me nervous!”

It’s such a battle getting him comfortable in group settings that we’re considering not going to Thanksgiving gatherings any more. We’re not sure it’s worth the struggle.

Another thing left out.

The biggest thing that’s left out, in my view, is deep conversation. I want to talk with my kid about his place in our family history; I want to dialog with him about spirituality in all its nuances; I want to ask him questions about his inner life and get answers that mean something. I want him to ask me deep, interested questions. I want to teach Joseph some of the wisdom I’ve gleaned; I want him to teach me from his youthful understanding.

I want what conversations like these lead to: both parties coming up with a change in perspective, a deeper understanding of each other and the topic of discussion.  I want it, I want it, I want it.

Sigh. Another thing left out.

I know things can get better. We thought we might have to leave out living a normal life at all when Joseph was so terrified of dogs. Dogs are everywhere, and life was becoming one horrifying incident after another. But now dogs are a non-issue. So things can, and do, change. But they probably won’t change too much.

It is the way it is. I can’t fix it and I can’t change it. I am feeling sad about it. I am allowing that sorrow to fill my heart and I am sharing it with the Divine Mother, who knows all sorrows.

I recently heard a song that said God prefers the honest cry of a broken heart to a thousand hallelujahs.

Well, with the numbers of autistic children on the rise, God must be hearing some real honest cries from a lot of broken hearts.

God alone knows, but maybe that’s one of the reasons we’re given children with autism.

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.