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Hi Yoga Mother.

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

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

executive-function-brown

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

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

And he was trying.

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

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

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

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

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

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

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

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

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

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Two weeks ago, a dear friend took his life. As soon as we heard, in shock and grief, Blue Eyes and I made emergency arrangements for Joseph and headed to his house. As we got out of the car his wife hugged us and said, “They are just taking Ian away. Say goodbye to him while you can.”

The coroner, who was helping to carry him out in a stretcher, unwrapped his face. Blood spattered and frozen, it didn’t look like Ian. Ian, the ever-smiling, ever-caring, silently serviceful man, was not in that body. The Best Man at our wedding 24 years ago, the deep friend and brother in God, this was no longer present in that body.

Most of our meditation group gathered there. Hugs, love and tears were exchanged freely. Oh, Ian. How we miss you.

Do we not know what an impact we make on others in our simple lives? Ian and his wife were so kind to Joseph. Healers come in all kinds of packages, and Ian, by his humble example of love and care, was a healer. He was an important male role model in my son’s life — and now he has removed his physical presence from our lives. The reason will always be a mystery.

In sharing with our group a few days later, his wife brought up how small talk was so hard for Ian. He found eye contact hard. He didn’t know how to start discussing inconsequential things and let the conversation move around to things of more substance. His wife said that this brought up a lot of anxiety for him — how he wished he could be “enough.”

I knew Ian had social anxiety and that he couldn’t easily meet my eyes. A long time ago I had silently diagnosed him as on the spectrum. Way up on the spectrum, but still on it. Yet he was famous for his huge smile, so friendly and sweet. I never, ever would have tagged him as a potential suicide.

Held a pistol to his heart and pulled the trigger. A nice, neat hole that took him instantly. And such symbolism. A broken heart. No more heart for this life.

We didn’t, couldn’t, tell Joseph how it happened. We told him Ian’s heart stopped, but Joseph guessed that Ian took pills to make that happen and we didn’t contradict him. I wonder if many suicides are from people on the spectrum. The only other suicide I’ve had close to me was a teenage neighbor, and, looking back, I remember that he couldn’t make eye contact and that he walked funny — on his toes. Sigh.

A surreal twist to the whole situation was that Ellen, a medium from England, was visiting our friends. She comes twice a year to the US and conducts readings with loved ones from the other side. So as we grieved on that day two weeks ago, she would quietly point and say, “He’s standing right in front of that tree. He keeps saying, ‘I’m free! I’m free!'”. She said he took his life because he felt like he didn’t belong. All these years trying to fit in, and he just didn’t belong. He was so confused, she said.

As a spiritual being having a human experience, I too have often felt like an alien in this life. This is a common feeling for those of us who identify with our spiritual side more than the human one.  But to feel that one also just can’t fit in with other humans — that must be hard. To stand quietly while others talk because you can’t think of what to say. To feel things deeply and not be able to express them. To be unable to engage or outwardly connect with people who you know and love. Ugh.

I pray for my Joseph, and for all our spectrum kids. May they make their way in this crazy world. May they find connection and authenticity. And, when it’s not working, may they seek help. As Ian’s sister said at his memorial service:

I wish you had not been so heroic with your burdens;
I would have carried more, much more and gladly.
It would have been an honor.
So I spit on stoicism today;
That chill perjurer who poses as a virtue.

Someone once told me that Satan loves it when we don’t ask for help. And I remember, at an OA meeting, the leader said that if you share your pain, you leave it there; but if you leave it unsaid, you take it with you.

May we have such a good relationship with our ASD kids, and all our kids, that they can share the good, the bad, and the agonizing. May we, as parents, have the ability to empathize, to hear and feel their pain, and not try to gloss it over or make it all better when it’s not. May our children feel heard. And loved. And worthwhile enough to choose life when facing the darkness.

Om. Peace. Amen.

Blue Eyes and I strongly suspect that the head pastor of our church has been a yogi in the past.

If we told Pastor Rylan this, he’d probably fall off his chair laughing. Nonetheless, he is so expansive in his thinking, and so naturally attuned to yogic philosophy, that we are pretty sure we’ve got a yogi pastor. It’s what keeps us coming back to a Christian church.

Another thing we love about this guy is that he’s authentic. For one thing, he is totally up front about his struggles with depression. Sometimes the depression so strong that it obviously takes everything he has just to stand up in front of everyone for a few minutes to introduce the speaker on Sunday. I appreciate that someone who runs a large church, who serves as counselor, leader, deliverer of God’s word, can be so human as to admit this challenge. Definitely not the stereotypical Christian who goes around church with a plastic smile on his face.

This last Sunday, Rylan spoke about a long road trip he had recently taken. A family man, it was a big deal to spend a few days alone on the road, and when he arrived at his destination he was planning to go into seclusion for a week.

So he’s driving along, listening to one of his mentors speak about prayer. Rylan knows that what comes next on the CD is a talk about seclusion, and he’s eagerly waiting for the prayer part to end so that he can get some pointers for his silent retreat. Suddenly God speaks to him:

“Rylan, listen to this part. It’s for you!”

God continues, telling Rylan that he spends a lot of time thinking about Him, reading about Him, and talking about Him, but he spends almost no time talking to Him. This, God continues, is the reason for his doubt, depression, feelings of incompetence and insecurity. God says to Rylan, “I love you too much to let you go on in this way.”

Wow. Talk about a game-changer! Since listening to Rylan I’ve been much more actively speaking to God out loud, mentally, and without words, in my heart.

Maybe, in God’s perspective, we are all autistic! I mean, think about autism and then think about us:

People with severe autism don’t respond when you call their names. Well, how often do we listen when God calls our names, I wonder. How often do we even hear a call? I’m pretty sure we’re getting called, and I’m equally sure that, speaking for myself, I don’t hear it more often than I do.

People with autism engage in stimming, those repetitive behaviors that calm them down and make the rest of the world disappear. How do I stim, I ask myself. The answer comes quickly: Addictions, materialism, unhelpful habits of thinking and behaving that make me so forgetful of my larger, spiritual nature.

Making friends is difficult for people with autism — they have a hard time relating. How about that friendship with God? I’ve heard it said that God is the nearest of the near; the dearest of the dear. Do we get that? Most of us feel we can’t relate to God, and so we give up before we even start. When it comes to God, we have a social disorder.

I was writing this when Blue Eyes happened by. “What defines autism to you?” I asked him. With additional food for fodder, I continue:

People with autism simply don’t see certain things because they’re so self-involved. ‘Nuf said.

Lastly, with autism, communication is a one-way street. Ha! We’re so locked into our own little worlds that we rarely reach out to God. Maybe, from God’s perspective, there’s very little reciprocity.

But once in a while, as with Pastor Rylan, there is an opening. And when there is, God takes it, hoping for the best.

I’m going to start working on my own autism. Time to really (I mean really) speak to God, reach out to God, let God shake up my comfortable little universe.  Time to become aware of, and relinquish, the soothing repetitive habits that block my higher nature. Time to look for God, listen to God, respond when I hear my name called.

And, of course, talk to God. Just open up my heart and my mind, and say it all to Him/Her. I am ready for recovery!

Many spiritual teachers say that the epidemic of autism is a symbol for the rest of us. Could this be what they mean?

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.

Blue Eyes talks about a period in his life where his neck would go into terrible spasms — so badly that it would make him lose consciousness. He went to the hospital, where they ran him through a myriad of tests, but they couldn’t find anything wrong. The doctor finally told him that it was, simply, stress. Massive stress.

“Stress?” Blue Eyes looked at the doctor in surprise. “I’m not under any stress!”

But as he went home he started to look at his life. A very sensitive young man, Blue Eyes was far from home, working with a really rough crowd of guys. He didn’t fit in and he couldn’t fit in, but he felt stuck in the situation. Yes, he had to admit to himself, he was stressed. Massively stressed.

This is how I felt after my first appointment with Sheri, the therapist, last week. “Stressed? But I’m not under any stress!”

With Sheri’s guidance, I looked at my life. If I’m not with Joseph, I’m almost always doing something “useful.” I work or I go to meditation or I attend a spiritually-oriented class. Even my weekly date nights with Blue Eyes consist of going to meditation. Which is great, but there’s got to be a balance there somewhere. Or so I’m told.

With Sheri’s encouragement — really, almost at her insistence — I spoke with Blue Eyes about an upcoming “date” to go to a spiritual class. Our amazing respite worker, Karen, agreed to come earlier than planned, I picked up Blue Eyes at his work, and we spent a whole afternoon and evening at the river. Our area has the MOST beautiful river, so clean and healing and nurturing. We swam and we napped and we read and we talked. As the sun began to set we hiked out, feeling alive and grateful and fed.

I have been seeing Joseph as a problem, a nuisance. The problem here, I believe, is that I haven’t had a big enough vision about my child. After all, I didn’t have a kid in order for him to win popularity contests or get straight A’s. I had a kid, and I think God gave me this kid, in order to for him to go out and make a positive difference in this world.

Kahlil Gibran says:

imagesYou are the bows from which your children
as living arrows are sent forth.
The archer sees the mark upon the path of the infinite,
and He bends you with His might
that His arrows may go swift and far.
Let your bending in the archer’s hand be for gladness;
For even as He loves the arrow that flies,
so He loves also the bow that is stable.

* * *

My job: To let God bend me with gladness. To shoot the arrow straight, swift and far. Straight to God’s purpose, whatever that may be. Probably something in “the house of tomorrow, which you cannot visit, not even in your dreams,” (Kahlil Gibran).

Mom and JosephJoseph’s future is not even my business. My business is to focus on bending (and part of the bending, happily, seems to be having more fun!) and becoming a straight-shooter. My dear little arrow is already fearfully and wonderfully made, and it is tremendously egotistical to think that his development is all on me.

In truth, Joseph already makes a positive difference in this world. People who interact with him are touched, impacted by his sweetness and caring and humor. For many, he is the first person with autism who can engage quite well with them.

So maybe I can relax and realize that the arrow is already going straight. These kids are God’s own, just like all of us, and so I give mine back to God.

Which, of course, is where he is anyway.

Blue Eyes and I went out to see The Hobbit the other night. I wish I’d done some research on it beforehand, but I thought I could trust a movie that had been made from a delightful, magical children’s story.

Sigh. To say it was violent is like saying autism is a pain. A major understatement!

THE-HOBBIT-AN-UNEXPECTED-JOURNEY-PosterFrank Schaeffer from The Huffington Post, in his review of  The Hobbit, says that there were levels of “carnage, violence and needless clutter ‘noise’ in the form of extravagant needlessly complicated action (in) almost every scene.”

Sure wish I’d read that review before deciding to go.

The non-stop carnage and violence got to me. Big time. I felt sick and anxious. My heart was going a mile a minute. But, I thought, I’m a big person. I can make wise choices. So halfway through the movie, I told Blue Eyes I was going to go find a happy movie and that I’d find him when it was over.

The theater had two other movies playing. I stood outside one and listened: screaming, pounding, guns firing. Nope, not that one. I stood outside the other: dialog, laughter, sweet music. Maybe I’d found my movie.

I made my way to a seat and watched Django Unchained. This movie mixed in sweet southern scenes with horrid, violent excess.  I held my breath and shut my eyes while the dogs ripped apart the slave. Then we were back to southern sweetness and hospitality, and I relaxed. The unexpected bloody gun scene made my muscles rigid with tension. In a few seconds my fear drove me from my chair and out the door.

I was literally shaking.

I was also stuck. It was 37 degrees outside, so I couldn’t go sit in the car and wait for Blue Eyes. The ushers were hanging out in the lobby, talking and laughing, and I didn’t want to spoil their fun. I looked at my watch: 15 minutes left of the Hobbit. They must be calming down and resolving the movie at this point, I reasoned; I’d go back in and enjoy it.

In I go, 3D glasses propped over mine. Creatures attack the dwarves and the hobbit. The lovely dwarf king is brutally beaten. Crazy things pop out of the film at me. I turn to Blue Eyes and whisper, “I can’t stand it anymore. Can we leave?” “It’s almost done,” he says. In our parallel universes, Blue Eyes can separate fact from fiction, whereas I am unbearably stuck in the violence.

Even in my traumatized state, I flashback to Joseph turning to me in the middle of a movie and asking, “Can we leave?” What a pain that was. Yet now I was taking a walk in his moccasins.

I sob quietly, and tremble until the fighting is over. Finally the movie ends. People applaud happily; what a great movie.

On the way home I sit, shaken and sombre. I think about how trapped I felt. All the violence and noise and excess flying around me, and I couldn’t escape it. I couldn’t stop it from affecting me. It was like the horror reached into me and did with me what it wanted, and I had no choice in the matter. Was I the only one who felt this way? If so, why was that?

I can count on the fingers of one hand the number of times I’ve gotten Joseph to a movie. He is so sensitive that the blaring surround-sound is difficult for him. If anything happens that is remotely bad or violent, he feels it deeply. We watched a video the other night and he burst into tears when they gave a dolphin a tranquilizer shot. He cried in his class when they watched a G-rated movie where the dogcatcher caught a dog in his net.

I used to silently mock Joseph for his movie sensitivity, but no more.

I tell Blue Eyes two things: 1) I will, henceforth from this moment, be much more careful about the movies I see, and 2) I will be much kinder to Joseph regarding his sensitivity to movies. Whereas many people can stand, and even enjoy, more than I can in movies, I can stand, and enjoy, more than Joseph. This does not make him wrong or bad or stupid. It is to be respected.

Once, at an autism support group, Blue Eyes and I made a joke about Joseph’s sensitivity. We told them that, when he was naughty, we threatened to take him to the movies. Everyone laughed.

They understood because their children, too, were ultra-sensitive.

But I wonder, how normal is it to enjoy the violence and horror of the movies I watched? For that matter, how normal is it to be unaffected when a dolphin gets a shot or a dog is captured? When is sensitive too sensitive, and when is it right to feel for another’s suffering?

Today’s normal is a far cry from the normal of 50 years ago. It is also far from humane. The normalizing of violence simply must play a part in the mass shootings that have been taking place way too often. I think that, on the spectrum of sensitivity, I’d much rather be on my son’s side than on the other.

There is so much in life we’re not normally sensitive about: Angels among us, intuitive guidance, souls we’ve known before, the presence of God. Whether it’s movies, spirituality or anything else, perhaps we’re meant to cultivate our  sensitivity rather than to try to lessen someone else’s.We’d be watching different movies, and it’d be a pretty different world if we did, wouldn’t it?

My father-in-law, who I never got to meet, made a deathbed prediction about each of his three children. His family was around him and he spoke with all the power of a man from whose eyes the physical, worldly scales were lifting.  He pronounced that his youngest daughter, Jeni, would surprise them all. Turning to his oldest daughter he said, “God help the man who marries Karen.”

Then he made his prediction about Blue Eyes.

He said that some scheming bitch would get him.

You can imagine that my future in-laws did not welcome me with open arms.

When I meet my father-in-law on the other side, he and I will have a score to settle.

Nevertheless, he wasn’t entirely wrong. While I am rarely a bitch, I do scheme. Not so much with Blue Eyes, but definitely with Joseph.

For instance. If you have a kid anywhere around 7 years old, you have probably heard of the Froggy books. Endearing and funny, Joseph loves them all. In every Froggy book, characters call out, “FRROOGGGYY!” and Froggy answers, “Wha-a-a-a-t?”

(Stop right there. Often autistic kids don’t answer when you call their name. We had already overcome this hurdle but, if it’s one of your challenges, get the Froggy books!)

When I read these to Joseph, or when he reads them himself, we say “Wha-a-a-a-t?” in a musical tone. One day I noticed that, when I called Joseph’s name, he responded to me with “Wha-a-a-a-t?” in the same musical way.

Hmmm, thought I. He is starting to imitate the Froggy books. So I got online and ordered a few of the books that might serve my future purposes. I chose Froggy Eats Out, Froggy Plays in the Band, and Froggy Goes to Camp with the thought that Joseph might learn to 1) Be more comfortable eating in a restaurant, 2) Be less sensitive to live music and 3) Go away to summer camp.

Our church offers a 3-night residential summer camp for kids in grades 2-5. I’d mentioned it several times to Joseph but each time he’d responded with an angry outburst: “I don’t WANT to go!”

I understood. So many unknowns, potential noise, unpredictable children, unfamiliar surroundings. It would be great for him, I thought, but how do you get a fearful, anxious kid to want to do something like that?

I said no more about it and simply read Froggy Goes to Camp with him. That book turned out to be a favorite. I cannot tell you how many times we’ve read it and laughed at the antics of Froggy and the others at summer camp.

Then it happened. One day we were leaving Sunday School when Joseph happened to look up at the monitor. There were pictures of kids swimming, boating, and generally having a great time. “What’s that?” he asked. “Oh, that’s summer camp,” I said, as casually as I could.

“I want to go!” Joseph said. I explained that it was 3 whole nights away. “I want to go!” Joseph said.

I discussed it with the guy in charge. Unbeknownst to us, they had assigned a woman to be Joseph’s aide at Sunday School — someone with special needs experience, who knew to hang back unless she was needed. Isn’t that nice? We all felt that Joseph needed someone with him at camp, and they felt that it ought to be a man who could sleep in the cabin with the boys.

So Blue Eyes and Joseph are away at summer camp. Last night was the first night and it sounded like it was going really well.

Honestly, even with all my scheming I didn’t really believe this would happen.

Things cycle in and out with autism. Joseph’s little fears, which had previously receded, have been making a re-entry. All of a sudden he won’t eat outside because of bees. Swimming in the pond is scary because of dragonflies. The other day he screamed in terror because there was a deer nearby.

But yesterday we were driving along and I commented on how quiet Joseph was. “What are you thinking about?” I asked. “Camp,” he replied. “It’s going to be really, really fun!”

It is rare for Joseph to look forward to something new. Dear God, please let it be really, really fun.

I’ve got a quiet house for a few days. Think I’ll use the time to scheme up something new.

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 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.

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

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

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

He went and looked.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

It was a most unhappy head trip.

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

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

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

I was astonished.

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

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

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

Peace.

At five this morning, I was awakened by the sound of Joseph coughing in his room.

Not so long ago, this would have shot a lightning bolt of adrenaline through my body. He’s awake already! my mind would say. Today is going to be a very rough day. He’ll be sleep-deprived and he’ll be out of control with autistic behaviors.

The prospect of my going back to sleep would then have been impossible.

This morning I still felt the shot of adrenaline, but it wasn’t a lightning bolt. It was a mild electric shock that came and went. I dozed a bit more, woke up and went down the granny flat where I do my spiritual practices.

When I sat for meditation, I watched the disturbance in my mind. I have set up a strong pattern of allowing Joseph to disturb my equanimity. Since awareness is half the battle, I didn’t do anything but watch closely, almost admiring how very much I’ve allowed what Joseph does and doesn’t do to affect my mind and my emotions.

Yoga talks about how much attachment and desire can take us off-balance, and that is what I was witnessing this morning. I am attached to Joseph getting sleep so that I can have a good day. I strongly desire him to not act autistic, so that I won’t be embarrassed.

There they are: attachment and desire. The root of all suffering.

Having witnessed these things, I then took my attention to the Divine.

“You know what a screw-up I am,” I said to Him/Her. “I would like to be more even-minded, but this is what’s going on right now. No sense pretending otherwise.”

My vrittis (attachments, desires) were really whipping up a storm. My mind responded by making up what appeared to be a very realistic story: What a horrible day it was going to be. We had a social occasion with NT’s (neuro-typicals) that afternoon, and Joseph was going to be a total mess because of sleep deprivation. He’d stim, scream and say loud, inappropriate things. I’d have to spend the whole time trying to calm him down and would be completely humiliated. I should probably just cancel the whole thing.

Fact is, this all used to be true. When Joseph didn’t sleep because of gut troubles, he behaved as if he was severely impaired. It was excruciating for me.

What I was experiencing wasn’t present-day stuff, though, and I knew it. But I couldn’t keep the trauma in my being from playing out, so I watched it. Fear, worry and terror washed over me in crashing waves. I stayed present to it, as best I could.

Then it was done. Some traumatized part of me had needed to be listened to, and I’d managed to listen. I landed back in my body, breathed some, prayed some, and gave God a deep pranam (bow).

It was around seven when I walked into Joseph’s room. He came down for breakfast and then said he was tired. He crawled into bed and slept for two hours. The rest of the day was great.

Last night I dreamed I was a war veteran. I don’t know much about post-traumatic stress disorder, but I wonder if I have it. No matter. I trust the process. I honor the process.

If this is how I am to let go of the past and move forward, then so be it. Bring it on, God! I am ready.

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!

I knew it the moment I saw him this morning. Something about the angle of his head, the placement of his eyes. The way he went directly into the living room and started humming, humming, lost in his own world.

Regression.

Blue Eyes and I had been hoping to go as a family to the monthly potluck that our friends have — to celebrate each other and this beautiful spring day. When we mentioned it to Joseph he cried, saying he didn’t want to go, he couldn’t go, he was scared of the dog, he wanted to stay home.

We couldn’t go. It would have been ridiculous to drag him, in this state, to a home filled with people on the inside and dogs on the outside.

I don’t know quite how to describe the panic and moroseness that we, as Joseph’s parents, go into when he regresses.

First off, we try to solve it. We think, what brought this on? Is it because we let him have a tiny bit of salad dressing with dairy in it yesterday? (Could the tiniest bit of dairy really do this?) Did he sleep really badly? Is it all the pollens floating around? Or, we ask hopefully, is he simply on the brink of a developmental surge?

Next we try to bring him back into our world. We get him to do chores with us, to run and play with us; we try many ways to engage him. Nothing works.

He’s so very autistic-looking. His gait, his posture, his eye contact — everything is off. It feels so hopeless.

Late this afternoon we went to our local co-op. While I was getting some potatoes, Joseph started pushing the shopping cart along. He didn’t notice that he was getting in people’s way, banging their carts with ours, squeezing one poor woman against the wall.

I was calling to him in that stressed-out, pissed-off voice of the parent, trying to get his attention, when these arms went around me and hugged me.

I turned around to see an old friend, a fellow yogi. He looked at me with all this light in his eyes and I suddenly felt the dark cloud that was around me. The light coming through him magnified for me what a dark place I was in.

Ugh.

Sometimes we think that there is no limit to Joseph’s future. We envisage him being a professional musician, having a wife and children and friends and lots and lots of happiness.

But this evening it was different. Blue Eyes and I discussed putting Joseph into a home when he turns 18. Maybe some kind of halfway house for disabled adults — something where he could bag groceries during the day and have a place to live at night. We grieved all the time and energy we are putting into him — the difficulty of our lives — when it is going nowhere.

And that, folks, is how we respond to regression. It is hard. So very, very hard.

I’ve never asked this before in my blog but, if you’re inclined to pray, would you be so kind as to pray for Joseph and Blue Eyes and me? We could use a little extra help right now.

Thanks.

I am on a liver cleanse. I’ve done this same cleanse every year or two for the last decade, but it seems I always forget the hard part until I’m in it again.

A long time ago, I was in the habit of using food in a very destructive manner. Then I enrolled in Overeaters Anonymous, went to therapy, faced many demons, worked the 12 steps hard and, with a lot of help, made my way out.

So why is this cleanse so difficult? Because I still use food to go unconscious, but in small ways — it doesn’t run my life the way it used to. Getting very conscious about my food — and, therefore, about my child with autism and my life itself — is challenging. And my body hurts. I feel like one big, toxic mass.

But you know what? I’m going to stick it out. This is a four-week cleanse and I am on day four — which, though difficult, is nevertheless easier than day three was.

The part of me that wants to grow, that wants to be conscious, is delighted. I get to work on self-control. I get to give it to God instead of diving for the object that alleviates my awareness. I get to witness the grasping mind wanting so badly to grasp.

Do you remember that movie, Airplane? As things go from bad to worse, the pilot keeps saying things like, “Guess this was a bad day to give up alcohol,” as he downs a drink. Later it’s, “Guess this was a bad day to give up heroin,” as he shoots up.

That’s what my mind wants to do. Guess it’s a bad day to give up unhealthy food.

Ha! Not a chance, mind. This thing is bigger than both of us.

What I’d like to do in my life is focus not so much on my problems. I want to focus instead on God and the amazing grace of his/her presence in my life. Instead of the problem of autism, I want to focus on the power and profundity of parenting a child with autism…of how it’s changing me.

I gave a talk to a mothers’ group last week. I spoke with them about authenticity. I shared my challenges about raising a son with autism and I invited them to speak authentically.

It was beautiful. Lots of tears, plenty of laughter. For days afterward, in my own little life, I felt the cords of connection between me and these women I’d never met before — but who met me on such a deep level.

I was only able to be so real with them because of where this journey with Joseph has brought me. It has brought complete havoc on the person I was. It has cracked the cracks and removed the mask and brought me to my knees — which, I might add, is not a bad place to be.

Not bad at all.

So I think I’ll just stay here on my knees. Knowing God’s depth-less love for me, for Joseph, for every single one of us. Knowing that there is a plan — a soul agreement — around this journey, even if I can’t see it. Trusting that God will guide me to the next step I am to take — and that this is all I need in this moment. Meeting God where I am, toxic mass and all.

Courage. To one and to all.

When your kid gets an early diagnosis of autism, one of the questions that looms in front of you — that wakes you up at night and ruins your meditations and taunts you for never doing enough to “fix” your kid — is this:

Can my kid make it in a mainstream classroom?

Making it in a mainstream class stands for so much: normality first and foremost, and functionality, and competence, and capability — to say the least. There is a lot riding on making it in a mainstream classroom.

But, having been in mainstream kindergarten for three days now, it looks like it really stands for a lot of other things. Things like following directions, sitting still, watching the teacher, raising hands, answering questions, working on your own, working with others, and speaking only when spoken to.

I’m going to hazard a guess that, eventually, Joseph will be able to do most or all of these things. In only a few days he is already getting the routine, learning to raise his hand and pay more attention to the teacher. The aid stands over him and works with him constantly, and he is learning a lot from her.

So I’m supposed to feel happy — aren’t I? It’s kindergarten. It’s not just the ideas about the thing, but the thing itself. And it looks like Joseph will be okay at it.

But here’s one other thing:

One of the yamas that yoga discusses is ahimsa, which translates into English as nonviolence. The obvious practice of ahimsa is not killing, hurting or maiming other creatures. But ahimsa can take place on very subtle levels —  including the practice of not harming another person’s enthusiasm.

And as I watch the teacher and the aid shushing the kids yet again, or telling a kid (usually a boy) to sit back down, or to keep their eyes on their paper, or to put the pencil down and wait, or to scoot up to the table, or whatever, I feel, well, torn.

I mean, of course the kids need to learn their manners and discipline and the art of listening. But “eyes on the teacher” doesn’t mean they’re actually watching. And “pencils down” when they’re quietly doing something fun and creative just seems wrong. When did we get so controlling and conformist?

There is another special needs kid in the room. She has been told what to do so much that you can see she just wants to explode. She is just barely holding it in. Some of the kids — boys, in particular — look so bored. Is this Joseph’s eventual fate: suppression and boredom? Is this what we’ve worked so hard for him to do?

It’s interesting to see the difference between what RDI teaches (“Oops! You forgot something!”) and what they do at school (“Remember to push your chair in!”). RDI wants the kids to observe, to reference, to think for themselves. The school? They want the kids to push their chairs in.

Certainly Joseph can learn to follow orders and to do things “right.” That’s not usually a high-functioning autistic kid’s problem. Can they — will they — slow down and let him figure something out by himself? Can they — will they — encourage him to pretend? Can they — will they — scaffold him during recess, when he doesn’t know how to interact with the other kids?

I don’t want a teacher who just controls and instructs. I want a teacher to fall in love with my kid’s potential.

I’m being harsh. I’m being Mother Bear, up on my hind legs, feeling protective of my cub.

Let’s start again: Joseph is in kindergarten. He likes it! He told me today that he’s got a new girl he loves (he loved someone at preschool). The other kids seem open to him. What surprises me is that quite a few other kids have special needs, too — though not autism — and he fits in a lot better than I expected. He is adjusting. He is hungry to learn. He keeps bragging about the fact that he’s in kindergarten now.

So the problem lies not with Joseph. It’s me who is having existential angst. And maybe, after a year or two, when Joseph can go without an aid, we can transfer him to one of the more alternative schools around. One that helps his mind to blossom, exercises his body and nourishes his soul.

God willing.

Just now I laid by my son as he fell asleep. I turned to watch him as his eyes closed and his breath evened out to sweet, rhythmic ebbs and flows. I felt such love in my heart for this amazing soul, and deep gratitude for the very difficult but profound journey we’ve had with him.

In some self-growth group I was in — can’t even remember which now — we used to say, “Trust the process.”

That’s it, isn’t it? Trust the process. Trust the journey. Trust God.

Trust.

Not ideas about the thing, but the thing itself applies not only to kindergarten. For me, in my journey, in my life right here and right now, it needs to also be applied to trust.

Not ideas about trust, but trust itself.

*title originally created by the poet Wallace Stevens

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

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

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

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

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

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

It was, in a word, Divine.

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

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

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

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

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

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

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

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

What a life. What a journey.

Thank you, God, for being in it.

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.