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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.

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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.

I am reading a great book , a true story called Dying to be Me. To make a lovely long story extremely short, this woman had a near-death experience (NDE). One of her insights there was this:

I understood that I owed it to myself, to everyone I met, and to life itself to always be an expression of my own unique essence…Being inauthentic also deprives the universe of who I came here to be and what I came here to express.

She writes about the ultimate perfection of everything. She was given a choice: If she chose to die, for instance, her husband would soon follow her, and that would be perfect! On the other hand, if she chose to go back, she and her husband would work together on their passion, and that too would be perfect!

I look at Joseph and I wonder about the perfection of his autism…and the perfection of being his mother. This week has not felt like perfection. Blue Eyes just started a new building job and has been absent until bedtime, school has been doing STAR testing so the routine’s been totally different, and the teachers are trying to make up for it by plying their students with wheat and sugar. In other words, I’ve been single-mothering an off-balance, artificially hyped-up kid who, this week, melts down regularly and can hardly put two sentences together in a coherent fashion.

In meditative fashion, there is the part of me who objectively watches myself fall apart. “Huh! Interesting!” It observes. “She can’t keep it together even though she knows it’s not for real — even though she’s practiced for years staying calm on the inside no matter what’s going on externally.”

The other part of me, hooked-in emotionally, despairs for today and tomorrow. Not only tomorrow tomorrow, where he probably will once again wake up way too early and I won’t get my meditation time and he will be tired and crabby and a royal pain in the butt. I refer also to the other tomorrow: you know, fellow autism parents — the one where your grown-up autistic kid is alone, isolated, lonely, impoverished, homeless, and terribly mistreated by his/her fellow man. Yeah, that tomorrow.

Not my idea of ultimate perfection.

Anita Moorjani, the author of Dying to be Me, was living a life consumed by fear when she got cancer. After four years of fear and struggle she succumbs to death, where her “deceased” father and “deceased” best friend tell her to go back and live her life fearlessly.

I have wondered about people who have amazing NDEs: Do they ever have a bad day afterward? Anita says she has times where she feels disconnected:

When we live completely from the mind over a period of time, we lose touch with the infinite self, and then we begin to feel lost. This happens when we’re in doing mode all the time, rather than being. The latter means living from the soul and is a state of allowing. It means letting ourselves be who and what we are without judgment. Being…means that our actions stem from following our emotions and feelings while staying present in the moment.

Oh yeah. I can stop and just breathe for a moment. I tell my yoga students that one of the great things about the breath is that it’s always present — so, the moment you tune into it, you too are present. That gets you out of your crazy mind for a blessed moment, which can create a gateway into more moments of realizing our connection with the Universe — and, oh yes, even the ultimate perfection of it all.

Ram Dass talks about how we are all sandpaper for each other, smoothing out each other’s rough edges. Well, this week Joseph has been one hell of a sandpaper for me, and having my rough edges worked on has not been comfortable.

But those who get more than a glimpse of the other side come back and tell us to get out of the comfort zone. Live your life fearlessly! They say. Be totally authentic! Know that you are deeply loved and cherished, simply because you are you!

Breathing this in. Somewhere in my soul I know this is the truth. I know my son is just perfect and so is this life of mine, which gives me endless opportunities to practice profound teachings in the cold light of day.

Endless opportunities to open to the perfection of this moment. Endless opportunities to let go of fear and embrace the gift instead. To go forward in faith and security, loving and feeling loved.

Amen.

 

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.

A couple of months ago, I locked myself in the bathroom and sobbed. Something momentously, earth-shatteringly terrible had happened, and all I could do was cry and cry.

Um, from two months past the event, I confess that I can’t remember what I was crying about. It was something Joseph had done, of that I’m sure.

So there I am in the bathroom, hysterical with tears, when Joseph comes to the door. “Let me in, Mom!” he pleads. Angry and upset, I refuse and go back to my crying. He is persistent though, and finally, thinking that maybe he’ll be repentant or at least supportive, I unlock the door.

He looks at me, with my red face and waterfall of tears running down my cheeks.

And he smiles.

This is an ongoing thing, where Joseph smiles when others are upset or hurt. It has gotten him in trouble with other kids since he was in preschool. He knows it’s not the right thing to do, but it seems he can’t help it. It’s hard for him to act “normal” when others cry.

In the book Look Me in the Eye the author, who has Aspergers, describes what this phenomenon is for him. He’ll hear about some horrible accident and then he’ll think about how grateful he is that it didn’t happen to the people he loves the most. He’ll smile thinking about those people, and that’s when he gets in big trouble for smiling when someone is relaying tragic news.

A friend of mine has an adult daughter with autism. Her daughter will stick her foot out in an aisle, make someone trip, and smile.

I don’t know exactly what happens for Joseph to make him smile. I do know that, when I was in his classroom this year and a kid got upset about something, he turned first to Joseph and snarled, “Don’t LOOK at me!”

In that bathroom incident, I knew just how this kid felt. When Joseph smiled, I got mad. Furious. I yelled at him for smiling,  pushed him out of the bathroom with much force, and re-locked the door. Then I had even more to cry about.

A while later, when I finally emerged, Joseph was nowhere in sight. I finally found him in another bathroom, sobbing, with the door locked.

Blue Eyes brought about a truce, and Joseph and I headed off to his school, sober and spent.

I felt bad about manhandling Joseph so roughly, but Blue Eyes was reassuring. Sometimes Joseph needs a point brought home very strongly, he said. Let’s see if this incident registers and helps him to respond in a way considered more normal.

I’ve been having a rough time with my feet lately. They’ve been painful and, sometimes, difficult to walk on. Earlier this week, I was rushing up the stairs to get Joseph out the door for school, when I slammed my big toe into the stair rail.

The world stopped and I sobbed with the pain. Joseph came down to me, looked at me seriously and said, “What happened, Mom?” Through my tears I told him and then asked for a hug. He gave me one. Then he said, “I didn’t smile, Mom!”

I was really proud of him. I said so then and brought it up again later, in order to spotlight what a great thing he’d done.

It’s a small thing, but it’s a big small thing because of its effect on other people. I hope that this lesson stays with Joseph, as it’s a lot easier to get along with “normal” people if you can act that way too.

What it’s taught me is that it’s important to make a stink about things that are inappropriate — a big stink, so that Joseph really gets it. When he blew his nose into the throw rug recently, Blue Eyes and I got very verbally grossed out. I don’t think he’ll do that one again.

These are the kinds of things we work on in our house, where life can get a little surreal. Not quite normal, but not so far off, either. Next to normal. That’s where we reside.

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.

Blue Eyes and I met on a group pilgrimage in India. That first meeting, we sat in the hotel lobby and talked for many hours, late into the night. Though our bodies were sitting sedately on couches talking away, I had the sense that our souls were above us, dancing in the delight of their reunion.

This year we celebrated 20 years of marriage. It’s been a great marriage. For a long time we were confused about whether or not to add a child to the mix but, 13 years into our marriage, the Universe made up our minds for us.

Anyone involved in the world of autism has heard the statistic that 80% of all autism marriages fail. It’s the same difficult odds, I might add, when a child dies.

Maybe it’s not actual death, but having an autistic child is like a death. The death of dreams, of plans, of what you thought the parenting journey would be, of what you thought your marriage would be. The death of your life as you knew it.

In many marriages, autism produces a long, slow spiral downward. Truly, I can see why. The isolation of having a kid who cannot cope being with other people, the stress of having to figure out how to deal with autism, the major financial stress of medical and behavioral interventions.

I am fortunate to live in an area that had a support group for parents of young ASD children. Most of us were dealing with the above stresses and the co-occuring problems of autism, as well. Sleep, for example, was a huge issue. There were five core moms in this group, and we discovered that most of us weren’t sleeping with our husbands. For one reason or another — a mom’s fragility sleeping because of stress, a child who wouldn’t sleep through the night without a grownup with him, a parent’s inability to cope with a child’s frequent wakings — long-term sleeping separations were taking place.

This is hard. In my marriage, holding each other before or during sleep is a wonderful, and important, way to connect after a busy day apart. And, of course, when you’re not sleeping in the same bed, sex pretty much flies out the window. There goes another significant connecting point.

If you’re in a marriage and have had a recent autism diagnosis, here is my advice: Get help. Get help, get help, get help.

Part of our autism “benefits package” included eight sessions of marriage counseling. The strain didn’t go away with eight sessions, so we were granted an emergency package of eight more sessions. What a gift this was. All conflict is an effort to birth something new, and during these sessions we worked to birth a new marriage. The counseling sessions were a great start, and it still took us a long time to figure out how to be married in a way that could work with autism.

It’s like this: the chronic stress that raising a child with autism entails affects your marriage at its weakest points. So you either strengthen your weakest points, or you die.

We had to learn how to have fun again. Since we couldn’t have fun within the family (at that time, Joseph was way too challenging to be fun), Blue Eyes and I needed to go off by ourselves. This meant finding someone who could look after an autistic child. For many families, trying to find this person is huge. Few outsiders can deal with autism and the way it presents itself. We ended up hiring one of Joseph’s behavioral-intervention tutors for occasional babysitting. Karen has become a great friend who still looks after Joseph several times a month.

We also needed to nurture our own souls. Joseph was a two-parent project for a long time, but we eventually got to where one parent could go to a yoga class or group meditation while the other held down the home front.

Lastly, we stopped taking it out on each other. We slowly stopped snapping at each other and rolling our eyes at the other’s viewpoint, and learned instead how to support each other — how to be friends sharing this burden instead of struggling individually with it. A burden shared is a burden halved, right?

At this point, we are heaving big exhalations and feeling that autism is not going to be the end of us. We are treasuring each other and enjoying our family. It helps that Joseph has improved so much.

The longer I’m married, the more I realize that marriage is not a destination. It’s a journey. We are not at happily ever after, but we are at happy. After all we’ve been through, happy is a terrific place to be. I am grateful.

Are our souls still dancing in the delight of being together? I think so. All the more because, so far at least, our marriage has made it through the fiery trial of autism.

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 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.

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.

The judges of normality are present everywhere. We are in the society of the teacher-judge, the doctor-judge, the educator-judge, the social worker-judge; it is on them that the universal reign of the normative is based; and each individual, wherever he may find himself, subjects to it his body, his gestures, his behavior, his aptitudes, his achievements. — Michel Foucault

My earliest memory is of standing a few feet from my mother. She is crouched down, arms held out toward me, urging, “Come on! Come on!” Around me are some other people — brothers, sisters — friends, perhaps, but they are mostly a blur.

My mother’s eyes are so very clear to me. There is LOVE — incredible, unconditional, indescribable love — pouring from her eyes into my being. And since I am so young I am very sensitive, and I can also feel that force of love coming from, and through, my mother. It enfolds me, it holds me, it lifts me up.

Paramhansa Yogananda says that God’s unconditional, incomprehensible love is most closely represented by a mother’s love for her baby. In this memory, I am completely filled with that divine love.

In it, I know I can do anything. I take my first few baby steps, finishing my first walk in the arms of my mother. I hear the applause around me, I feel my mother’s excitement, and I know that I am so very, very loved.

What happens to that sense of being unconditionally loved? I believe I was connected to it all through my elementary school years. It was only when I started (shudder) junior high that the all-enfolding sense of being loved evaporated.

I remember the exact instant it happened. First off, my childhood soul mate — my best friend of all best friends — moved away just before I started sixth grade, so I was already feeling bewildered, like I’d lost half of myself. Then, on the third day of sixth grade, I got onto the school bus. One of the popular girls looked at me and said, derision dripping from her voice, “Do you always wear stretch pants?”

The truth was, I did always wear stretch pants. I liked the little straps that fit under my feet and the freedom of movement that stretch pants allowed. But when I looked around, I noticed that nobody — not one single other person — was wearing stretch pants.

A light bulb lit up in my mind. People care about what you wear! It said. They don’t think you’re worthwhile or loveable unless you look right!

I remember feeling disbelief, but then realizing I’d better get on the stick or I would be the target of all sorts of bullies.

Trouble was, it took me three years to really get the look together. So for those three years in junior high, I was spit upon, slingshotted, called horrible names, and more.

But toward the end of those three torturous years, I started to crack the code. I intentionally studied what made people acceptable in this strange new world where you had to conform in order to be loved. And I decided to play the game.

Off went the blue cat-eye glasses and on went contact lenses. Off went the K Mart clothing and on came stuff from the mall. The hair got styled fashionably. And when I started high school, with almost all new people, I  made my way quite high up the popularity ladder.

Still, I never lost the sense that it was some ridiculous game and I’d simply learned to play it. I looked with pity upon those students who, for whatever reason, couldn’t or wouldn’t figure it out and play along. I could never be mean to them the way the others were.

Now, as the parent of a kid on the spectrum, I wonder: Do kids with autism ever crack the code? Do they, can they, learn to play the game — or are they always the target of bullies, of impatient teachers, of people in general who don’t understand? Dr. Temple Grandin talks about those torturous school years. My ASD nephew went through it. So did my cousin’s ASD boy. Twelve years of school — no friends, merciless bullying, and always the outcast.

You may have read the recent story about the boy with aspergers who, after being yelled at yet again by his teacher, got onto the New York subway and lived there — one train after another — for ten days. He took the battery out of his cell phone because he didn’t want any phone calls. When he was finally “caught” he was asked why he’d done it.

His answer: He just wanted to be somewhere where nobody yelled at him.

When I think about Joseph going to a mainstream school, I see myself falling into the “act normally” trap. I demand, over and over, that he  stay seated during meals (he loves to pop up every few minutes to sing and dance, or spell out a word on the frig, or whatever catches his fancy). I insist that he not make strange movements in public. I try to make him brave about going down slides and things like that.

But when I think about homeschooling him, or having him in some other personalized learning program where teachers appreciate the differences in children, then I find myself relaxing and loving what makes Joseph so special.

Take music, for instance. Even Joseph is astute enough to know not to compose in public — but when he is at home, symphonies swell up in his very being, making him move and sway and hum and sing.

When I express interest, he’ll share parts of what he hears with me: “Here come the violins ( he makes some violin music). Now I hear flutes (hums a beautiful, high-pitched melody) — oh, here’s the trumpet” — and on and on.

What did Mozart or Beethoven act like when they were five, I wonder. Did their peers (and maybe even their parents) think they were a little crazy? Would public school — or any school — have crushed the music of their souls?

I guess the question I have about the music that pours through Joseph is: is this autism or is this an amazing gift from God? Or does it have to be one or the other? Maybe the answer is, simply, yes to all of the above.

The other question is, is there a place — other than home — where someone could see, and draw out, the gifts that God has blessed him with? Where his spirit won’t be crushed because he isn’t “normal?” Where he could fit in, autism and all, and not be seen as lesser than the others?

And if there isn’t, does the problem lie with kids like Joseph, or with the rest of us?

That’s it. I’m ending this entry with questions, not answers. Because I have faith that when we’re asking the right questions, we’re getting very close to finding the right answers.

It finally happened.

I was cooking dinner while Joseph was sitting at the kitchen table,  drawing a picture. He was excitedly narrating what he was drawing as he went along. I said to him, “I’ll know you want me to have a look when you say, ‘Mom, look at this.'”

Lo and behold, a few minutes later he said it. For the first time, ever!! “Mom, look at this!”

Then he drew something else and said it again. And so it’s continued for the last few days.

This evening he came into my room and said, “Mom, look at this train I drew!” He waited for me to look at him, and then the picture. Then he continued. “This one is the steam engine and this one is a passenger train. There is the track, and there are the rectangular windows.”

I remember declaring in an earlier post that, if Joseph ever said anything like, “Mom, look!” I would die happy. So when I die, please know that I have, indeed, died happily. 🙂

He’s also gone beyond just calling for my attention with  one little “Mom!” (which, in itself, was a huge milestone). Now it’s “Mom! Mom! Mom! Mom!” Or, for that matter, “Dad! Dad! Dad!Dad! Dad!”

So something is changing. Some new neural pathways are forming, new synapses are firing. Something, somewhere is developing.

It’s exciting. It’s great. It’s — wow — very, very encouraging.

But.

(See? We can always find a but.)

Joseph still has autism.

And I think that maybe, perhaps, possibly even probably, he always will.

He may always have some funny, jerky movements. He may always have a more challenging time with interpersonal relationships. He may always have a not-so-good sense of what’s appropriate and what’s not in social situations.

But I also think that maybe, perhaps, possibly even probably, he’s going to make it in this world.

Joseph just seems to draw people who are good, kind and loving. Whether it’s teachers (this means you, M.P.), sitters,  or friends — both big and small — people love his good, kind, simple and innocent heart. He’s a  bit like Forrest Gump in that way — but more mentally switched on, thank God.

I’ve been listening to a talk that Dr. Temple Grandin gave at the MIND Institute (http://www.youtube.com/watch?v=2wt1IY3ffoU). She is able to talk about her autism in a way that allows us ‘others’ to understand it better. She talks about a book she co-authored with another autistic person. He was more switched-on socially, so that was a bit difficult for them, but they both were obsessed with school buses, so that was cool.

I love the way she is able to laugh at herself. Autism has given her a different perspective than the “normal” person, and she has used this to carve out a unique and rewarding life. She offers hope — and ideas — for ways that people with autism can work, and live, and function in this world.

Maybe it’s not about making Joseph “normal.” Maybe it’s about helping him to do what we are all learning to do: manage our weaknesses and foster our strengths.

Maybe diversity isn’t so bad. I went to elementary school with an albino boy. He had white hair, always sat in the front row, wore very thick glasses and used a typewriter. He was also bright and funny, and, while we were fascinated with how he was different, we also loved him for who he was. We “got” him, in today’s vernacular.

So I think I’m going to stop acting apologetic about Joseph’s funny movements and lack of social graces. We will continue to help him grow in all ways, but we will also open more to the gifts of what we have.

When Joseph says, “Mom, look at this!” I want to remember that it’s not just “this” he is asking me to look at. He is also asking me to look at him — to see the beauty of his being, to be a part of his world. He wants me — and all the rest of us — to “get” him.

Sharing his world. I think that maybe, perhaps, possibly even probably, it doesn’t get any better than that.

I grew up in a determinedly non-religious, Jewish family. I believe that I always felt God’s whispers in my heart, but I didn’t know what to do with them. In my college years, as I experimented with various drugs, my longing began to emerge more fully.

How I wanted a spiritual teacher. I remember one night, looking up into the stars, beseeching the heavens for that person who would teach me about spiritual matters, who would help me to know God.

That was the first time I ever got an answer from the Universe. It was: wait.

I was both terribly depressed and absolutely thrilled that Someone, Something had responded to my call. And I waited. And I watched.

When I finally found that my path was an inner one of meditation and a more universal view of God, I dove in headfirst. Things were rosy and exciting. Many times I felt God’s quiet, inner presence guiding me or loving me. And I loved her back.

Then I got an email from my best childhood friend. Her brother, Daniel Pearl, was the reporter from the Wall Street Journal who was kidnapped in Afghanistan. The Pearls had taught me all I knew about the Jewish religion and our families had been very close for a while. I had watched while the Pearl children went to Hebrew school. I celebrated Passover and Sabbath with them. They are exceptional, talented people who live their lives with integrity.

After Danny was brutally murdered, I had to process through all the grief and horror just like everyone else who’d known him and loved him. And one of the discoveries I made was that I had a belief that ran like this:

If I do everything right, God will leave me alone.

Leave me alone in the respect that He won’t do anything horrible to me, in that tragedy won’t touch my life too terribly. But when I saw what happened to the Pearls, knowing that they “did everything right,” I realized that the game was much bigger than I thought.

So, I asked myself, why do I even try to connect with God if she won’t take care of me, won’t  play nice with me?

Ultimately I came to the fact that I am a part of God. I cannot separate from him no matter how he treats me, and I will always want to connect more deeply for the same reason a wave always melts back into the sea.  We are one.

But this God figure is tough. She is not only awesome; she is awful. It is the awful grace of God that one runs into in one’s life,  once or twice or more often – depending on what kind of lifetime you’re having.

The Goddess Kali, from the Hindu tradition, personifies this tough aspect of God. Ma Kali is a black-skinned Goddess who wears a garland made of 52 skulls and a skirt made of dismembered arms. In two of Her hands, She holds a sword and a freshly severed head that is dripping blood. She can appear to be wrathful and terrifying.

I knew an Indian man who was an ardent follower of God as Kali. He prayed to her constantly, worshipped her daily, constantly asked her to appear to him. For around 25 years he never stopped asking to see her in form. He longed, he wept, he pleaded to see her for himself.

Well, one day as he was praying he looked up, and there she was. Do you know what he did when the object of all that longing was finally there, right in front of him?

He screamed in terror and ran.

The Goddess Kali can do this to people.

Since autism entered my life, I have felt Kali as a constant companion. Her ferociousness has blown me away. Her willingness to sever my ego is enough to make me scream with pain.

And yet. Kali is said to be a most compassionate mother because she provides moksha, or liberation, to her children. She is the destroyer of unreality. When the ego sees Kali it trembles with fear because the ego sees in her its own eventual demise.

Underneath all the scary parts of Kali is the loving Mother, who is sweet, affectionate, and overflowing with incomprehensible love for Her children.

At this point in the autism journey, I can see both these sides of Kali. I am amazed at how surgically precise she is at removing my illusions, and how willing she is to do so — without anesthesia, I might add — for my own good.

But I am not so scared of her anymore. A few years wrassling with one’s opponent can build up, perhaps not friendship, but most certainly respect. Mostly now I feel her when, for example, the pangs of wanting a neurotypical kid get strong – when I feel I missed out on most of the fun of raising a child. I hear her laugh when I indulge in self-pity.

And I have come to trust her. God, in the form of Kali, is tough. The epitome of tough Love, if you will. But fire, while searing, is also purifying. Sometimes now, in that roaring fire, I will feel her love. I will know that the Mother is with me, tenderly looking out for my highest spiritual potential.

So, I have learned, it’s most certainly not about doing everything right in order to avoid the Big Lessons from the Big Guy. What a relief to give up on that one.

It’s about learning to surrender into that which is hammering at you, learning to see with clarity beyond the illusions in front of you — and, most importantly, to really, really know that it’s all being done out of Love. We came from Love, we will go back to Love, and Love is here and now, always, always.

In my journey, it’s required tough love to bring on an experience of true love. Such is the dance of spirituality and autism.

It’s been a quiet week in Lake Wobegone. Joseph (and, therefore, Joseph’s family) has been dealing with anxiety issues once again.

Sirens are very hard for Joseph. He can take other really loud noises but there’s something about the combination of  loud sirens combined with the thought of ambulances, fire trucks and other vehicles rushing to an emergency that just freaks him out.

A friend and her boy came over the other day. We took a walk over to a bus stop that was a little further away, in order to give the boys some exercise. Then we caught the bus into town, which is something that the boys love to do.

But on the walk over, we heard siren after siren after siren. Just when we thought it was done, another would start up. Poor Joseph. The only way he can cope is to stop whatever he’s doing and cover his eyes until it’s over. Not his ears, mind you (we couldn’t actually see the rescue vehicles), but his eyes.

So, as the sirens wailed nearby, my friend turns to me and says, “It’s almost like it’s on purpose!”

It feels that way sometimes. Like God is up there saying, “Let’s turn the heat up for little Joseph and see if he can take it.”

Covering his eyes when he’d actually be a lot better off covering his ears. It makes me think about everything we do in order to feel safe.

Just a few days ago, I heard President Obama say that the primary job of the government is for the protection and safety of its people; that’s why we’re at war. I think about all the insurance we buy in order to feel secure; the “safe” places we put our money; the fact that we create a nest egg at all. We wear armor, physically (for snowboarding, skate boarding, etc.) and psychically (keeping people at an emotional arm’s distance). We buy nice houses in good neighborhoods — sometimes behind locked gates. We take our Xanax and our homeopathy. We say our mantras and our prayers.

I once met a woman who’d lost 100 pounds. She said that the hardest thing about it was that now people stood closer to her. She didn’t have that physical fortress around her, keeping them away.

Safety. Amazing what we’ll do for it.

My little boy doesn’t feel safe at times. More than most. Toward the end of his school day he frets, sometimes panics, about whether or not his mom will really come to get him. Dogs are a constant terror. Crowded new places are no bed of roses, either.

It’s the limbic system, where the rational part is not calming down the primitive part of the brain. How do you battle something like this?

Two things work a little. One is called approach and study. So there’s a dog up ahead. I take Joseph’s hand, we stop and I say, “Oh look, there’s a big dog over there. Do you think he looks friendly (I am trying to teach him dog body language)?”

If Joseph doesn’t immediately panic about the dog’s presence, we can talk about the wagging tail and the ears up and the dog’s general demeanor. Theoretically, we can then edge up a bit closer and study some more, but we haven’t gotten to that point yet.

However. We do have friends with a mid-sized dog, and we have graduated from the dog being banned outside when we visit to the dog being held on our friend’s lap to Joseph actually touching his tail on our visits.

And that’s the second thing that helps a little: repetition. Over and over we visit this dog, Miles. Over and over we talk about how sweet Miles is, and again and again we bring Joseph over to get to know him.

That’s our little anxiety/safety issue, but I’ve been thinking about safety on a larger scale, too, and I’ve come to one undeniable conclusion:

NO ONE IS SAFE.

Our community is being rocked right now because a sweet 8 year-old girl was in a car accident last week. Her skull is fractured, she’s in a coma, and she’s got titanium rods in her legs. Will she survive? If she does, will she be brain damaged? Nobody knows.

This is a family that, two weeks ago, I would have envied a bit. Loving parents who got to raise a nice, neurotypical girl.

But sometimes everything we do to be safe just evaporates. Our very foundation is whipped away, and we have nowhere to stand. It’s terrifying.

Unless and until we realize that we are in the hands of God, and that is that. We can do all this stuff to feel safe, but the truth is it’s not our business: it’s God’s.

And this leads me to another undeniable conclusion:

EVERYONE IS COMPLETELY AND ABSOLUTELY SAFE.

Why? Because God is holding us all in His loving arms.

What is the biggest fear? Death. We tell Joseph that death is going home to God and, deep in my being, I know that this is true. Going home to the Source of unconditional love, light, and peace. How unsafe is that? And we don’t have to wait ’til we die to access this Source. It’s available here, now, always.

Here’s the part we don’t get: though life on this planet feels very unsafe, there is an invisible, intangible cable connected to us.

God’s got our backs.

I wonder sometimes how differently I would live if I really, truly got that, in every fiber of my being. That I was safe. That God, in Her depthless love, was always with me, protecting me, caring for me. Would I be lighter, feel freer, see the humor in what is now only viewed with fear?

How about Joseph — how differently would he live if he could get that he is truly safe, on every level?

I suppose it is a question we could all ask ourselves. And then, when we feel that safety, we could focus more on the invisible cable that connects us to God than on the jump (or, let’s face it — the push) off whatever cliff’s edge we’re currently teetering on.

Joseph had surgery this past Tuesday. In a delicate area. Ok, ok, I’ll tell you: he had a medically necessary circumcision.

I was, naturally, nervous about this. But my nervousness increased a lot when a friend reminded me that there was a lot of debate about general anesthesia and the toxicity it caused in children with autism. In particular, the use of nitrous oxide has been heavily debated in autism forums and websites, and there is concern that it can make an abnormality with folate (something many autistic people have) even worse.

So Blue Eyes and I hit the books — er, internet — to do some research on anesthesia. We discovered a lot of information, including an article by an anesthesiologist nurse with an autistic child (http://www.autismone.org/content/anesthesia-autistic-child-sym-c-rankin-rn-crna) that spoke particularly about which anesthesia was better for kids with very sensitive systems. It said to make sure your anesthesiologist understands that autism is not  simply a behavioral thing but a physiological condition, and that it needs to be treated as such.

We liked the article so much that we printed it out for Joseph’s anesthesiologist to refer to. We wrote down the types of anesthesia that we felt comfortable using.

But on the morning of the surgery, when we actually got to meet the anesthesiologist, he was arrogant. He told us that the article was anecdotal, that he knew what he was doing, that we could either do it the hard way (our way) or the easy way (his way).

Sigh. I know all doctors aren’t like this, but why are most of them like this? I was on the verge of demanding another anesthesiologist, but I held my tongue. Instead we stood up to him, as we have learned to do in the past few years, insisting that we work together on the drugs that would be given, and not given, to Joseph.

After all, isn’t “anecdotal” the way everything got decided before we developed an obsession with facts? And how do you get facts if no one is doing the research?

Blue Eyes and I had to be willing to go into the discomfort of disagreeing with an “expert.” We had to go on the edge of rudeness, insisting that our needs be taken into account. It took some discussion, but eventually the doctor agreed not to give Joseph nitrous oxide, and we all agreed on what Joseph would get.

This experience was very different from my emergency c-section. When that happened, we gave all our power away to the doctors. Whatever they thought was best was what happened. To this day, I still think it was all those antibiotics that caused Joseph’s already-compromised immune system to tip over the edge into autism.

Do you know which is the very best yoga posture? Standing on your own two feet. This is one of the things having a kid with special needs has taught me to do. Joseph got through the surgery beautifully and is recovering without any visible signs of trauma (other than the, well, obvious one).

We all play roles on this planet. The anesthesiologist got to play arrogant doctor, and I got to play insistent, determined parent. But I can’t help but think that, if insistence can decrease arrogance in the medical profession, then we need some more insistent parents. We need to arm ourselves with information, stand in our truth, and yet be open-minded to the doctors’ input. It’s an interesting balance.

Perhaps, if standing on your own two feet is the very best yoga posture, it’s those balancing postures that come next.

I have a large, lovely, crazy, wonderful extended family. When we get together for the holidays, there is usually around 30 people. ‘Most everyone is happy to see everyone else, and there is lots of conversation, laughter, and catching up.

In any gathering like this, you can see that some people get more easily overwhelmed than others. You can find a brother-in-law sitting alone reading, or a teenager lying on the couch listening to her ipod.

But what do you do when your kid is really, really sensitive? And shy? When s/he gets overwhelmed very quickly? And doesn’t know how to fit in?

We managed to avoid most of these difficult questions this year, because we missed Thanksgiving. We were in Maui.

But when we came back, I started to miss my large, lovely, crazy, wonderful extended family. So we called my older brother, Dan, and invited ourselves to his house for an overnighter.

I prepared in advance for this visit by listening to an RDI Webinar that gave  tips for holiday visits. One of their strategies was to make sure that the child with autism had a quiet place to retreat to.

Hearing that was a real “Ah ha!” moment for me.

You see, my younger brother, Aaron, has two lively young girls. As much as we love them, when we’ve stayed there I’ve seen Joseph get very withdrawn. He gets w-a-y overwhelmed and there is no private, quiet space for him to recover. He always sleeps badly.

I haven’t known how to explain to Aaron why we can’t stay with them, but now I have the words: Joseph needs a quiet place to retreat to.

Dan and his wife, on the other hand, have kids who are grown and gone. So half of  their house feels like a peaceful sanctuary.

Another plus is that Dan has a dog. Normally the mere presence of a dog would make the whole visit unthinkable, as Joseph is terrified of them. But this is no ordinary dog: this is a chihuahua. All four pounds of her.

Because she is so tiny, Joseph is not really scared of Randi. Randi is the one and only dog in our acquaintance who has this distinction, so it is no small thing. She is a great practice dog for us.

The RDI Webinar said to find roles for Joseph as much as possible, as it’s not always easy for people with autism to know what to do — how to fit in — among other people. So I got him involved in drawing and then giving the drawings to people. When it was dinnertime, he helped with table setting and various other things.

It worked really well. And then he slept beautifully.

Yesterday there were only the five of us, and then this morning two of Joseph’s cousins (the grown-up kids) arrived. At first, Joseph kept his distance. But eventually he felt comfortable enough to join us at the kitchen table.

Later, when it came time to go out, he requested that his cousins ride in our car, one on each side of him. This was big.

When they first sat beside him, he covered his eyes (he is both autistic and shy. I don’t know which was happening there — maybe both.) But slowly the hands came down and he connected, smiling and talking with them.

So there it is. Nothing monumental, but these small steps in connecting are huge steps for Joseph.

My hope is that, as Joseph makes these connections with members of his extended family a bit at a time, it will eventually be easier to be with more of them at the same time.

*            *         *

Joseph isn’t the only one in our little family who needs a quiet place. That’s one of the main reasons I meditate. My teacher says to create a portable paradise of peace within, and I don’t know what I’d do without that peaceful place.

Since Joseph was born to parents who meditate, we will, when the time is right,  teach him to do it as well. So perhaps he’ll learn to access the peace that passes understanding within his very own self.

Wouldn’t that go a long way in being able to stay centered and unshaken in crowded gatherings? We wouldn’t have to stay only in houses with quiet places when Joseph comes from that quiet place inside.

It will be interesting to see what happens when Joseph learns to turn inward for his solace — to turn to God for the calmness, peace, and serenity he needs.

I find it absolutely invaluable to live my life (as best I can) from the inside out, where my internal world defines my external world. It gives me much more serenity than living from the outside in, where what’s happening externally determines my level of serenity– or, more often, my lack thereof.

So what will happen when Joseph learns to live from the inside out? What will happen when autism meets yoga?

Stay tuned, dear reader, stay tuned.