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Every year, as I’ve dropped Joseph off at school, I’ve marked the day when excited 6th-8th graders have gathered in the parking lot with their luggage, waiting to leave for science camp. Through the years I’ve tried not to think about science camp much, as I couldn’t imagine Joseph being one of those kids. For one thing, he wet his bed forever, first weekly or so, then monthly or so. Only in the last year has it become an extremely rare occurence. How embarrassing would it be for a preteen to wet his bed in front of his peers? Secondly, I couldn’t imagine someone who isn’t good with change coping in such a new, dynamic environment for four nights and five days.

But last year, Joseph and Blue Eyes attended the 8th grade graduation ceremony and heard the kids’ parting speeches. Many of them spoke nostalgically about science camp being one of the highlights of all their years at school. When he began 6th grade this year and science camp was discussed, Joseph decided that he wanted to go. His best friend, Dallas, was going, and that seemed to make it all ok.

science-camp-3Dallas is a wonderful young man, sweet and smart and caring. The bond between him and Joseph is lovely to see and, though I sometimes wonder why a neurotypical kid with good communication skills wants to hang with a non-neurotypical kid without such good communication skills, I am most grateful for their friendship. Who knows what draws people together? Dallas stutters but manages to get around that nicely — maybe that’s what gives him compassion for Joseph’s challenges. I once asked Joseph if they’d ever discussed Dallas’ stutters. Joseph said, “No. We don’t talk about his stutter or my flapping. It’d be too embarrassing for us both.”

That’s quite insightful, don’t you think?

But I digress. As science camp came closer, I started a major (but private) freak-out: What if Joseph didn’t sleep at night, which used to happen all the time when we slept away from home? What if he got severely constipated, which also used to happen? The reason we bought our old beater of an RV was because it became the one place besides home where Joseph would poop and sleep, and it enabled us to travel. Other than sending mail to science camp, parents were not allowed to communicate with their kids and we most certainly were not allowed to be there. How could I make sure he was okay?

Joseph’s second best friend, Allen, is in his class and is a very high-functioning spectrum kid. Allen’s parents made the decision not to let him go to science camp for the same fears I had: not sleeping and not pooping. I felt deep compassion for their choice as I lay awake at night, worrying about these very issues.

It’s been said that Satan loves it when we don’t ask for help. My fears were in charge until I finally emailed Joseph’s teacher, expressing my worries. She wrote back that the camp nurse could check in with Joseph confidentially to make sure he was pooping, and that I could give the nurse an herbal laxative to administer should Joseph need it. She reassured me of the camp schedule and said that she and all the other staff would keep an eye on Joseph to make sure he was doing okay. I cried in private to Blue Eyes, who said that yes, he’d probably be somewhat sleep-deprived, but was that problem important enough to miss this amazing opportunity?

With that reassurance, I let go. Ever since Joseph turned six and declared he was ready for neurotypical kindergarten, he has been the driver for his next steps. He wants a dog, even though he’s scared of them? We got a dog. He wants to create a CD? Our friend has helped him to record several. He wants to be on the swim team, even though he can’t dive? That happened. He wants to stop attending special-needs basketball and instead join the school basketball team? He’s on the team. He wants to go to science camp? Well, good morning, campers!

sciencecamp1Yesterday morning, Blue Eyes went and picked up Joseph and some of the other kids to bring them home. One of the boys looked like he hadn’t washed his face since he’d arrived at camp. The boys were so tired they could barely speak. Joseph, though obviously sleepy, was the most-rested kid in the car.

Expectations are choosing, in the present moment, to be disappointed at some future time. With this in mind, I worked with myself not to expect Joseph to tell me all about his experience at once. The vision I tried not to envision was sitting around the dinner table that night, hearing his camp stories.  Joseph doesn’t like to be pressured to talk (have I mentioned the lack of communication skills?).

But when I got home from work, he was ready to talk. Enough. And at dinner, he talked some more. We heard the camp songs, the camp rules; we learned about the bird sanctuary and the night hikes. We heard about the running jokes in the cabin he shared with his classmates, the very boy-behaviors at night (think stinky gas) and the unique characters on the camp staff. We got him to bed at a decent hour and he slept 10 1/2 hours.

And yes, he pooped while he was at camp. Every single day.

He and Dallas have decided they want to go there again this summer for camp. Though I am already noticing a little worry (his teacher won’t be there; who will look after him with such diligence?), I know that, this time around, letting go will be easier.

Several years ago, Joseph turned to me out of the blue and said, “You know, Mom, I won’t be living with you forever.” When autism is in the mix, parents aren’t sure if this is true. We have to look at questions other parents might not, like can they find work and perform it well enough? Do they have the skills to live independently? Can they live in a way that isn’t isolating, but that offers them friends and, dare I say, a family of their own?

The past statistics are not encouraging, but Joseph doesn’t take those into account. He hasn’t read the autism book and he’s not going to, so who knows where his trajectory will take him? The words of Kahlil Gibran come to mind, and are a most fitting way to end this post:

Your children are not your children.

They are the sons and daughters of Life’s longing for itself.

They come through you but not from you,

And though they are with you, yet they belong not to you.

You may give them your love but not your thoughts.

For they have their own thoughts.

You may house their bodies but not their souls,

For their souls dwell in the house of tomorrow,
which you cannot visit, not even in your dreams.

You may strive to be like them, but seek not to make them like you.

For life goes not backward nor tarries with yesterday.

You 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.

Blessings to all.

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School psychologists through the years have warned that, as Joseph grows in awareness, autism will get him down. They’ve predicted insecurity, incompetence, depression, anxiety, drug addiction and suicidal tendencies. Whether due to a lack of awareness on Joseph’s part, a reasonable ability to overcome challenges, or his supportive school/social environment, we haven’t seen this happen.

I strongly dislike these dire proclamations, but despite that, some underlying part of me has been on the lookout for their emergence.

At the moment we are face-to-face with something that could bring it on:

Basketball.

Not the lovelpinnoccioy, slow, supportive basketball for kids of all abilities that Joseph’s participated in previously. Like Pinnoccio he wants to be a real boy, and that means school basketball with typical kids who have typical executive function and motor skills. And not young kids, either: 6th-8th graders only.

Joseph is on his second week of practice, and yesterday Blue Eyes showed up 15 minutes before it ended to watch. Picture it, if you can: ten kids playing fast, dynamic basketball and our Joseph standing out on the edge, his body turned partly away from the kids as if to block out such rapid-moving action. He sees his dad, runs to him and says, “Let’s go straight home!”

Ugh. Is this the time when he sees that he is not like the others, will never be like them? Is this when self-doubt and low self-confidence start their evil, insidious path inside Joseph’s head and heart?

“You’re being way too dramatic,” I tell myself. “Everyone has things they can’t do. It’s time he found some out.” I myself was lousy at group sports and swore it off without a complete breakdown. But what if, what if, what if this is the thing that cracks the lens and suddenly Joseph can see how his disability limits him…not only in basketball, but in so many other ways. And then what if he looks to his future and suddenly his dreams of productive work and a wife and family — of happiness, for God’s sake –seems way out of his reach.

And if he wants to quit basketball, what do I do? Do I coach him that quitters never win and winners never quit? Do I teach him about executive function and the limitations he faces? Do we just gracefully bow out?

Perhaps it’s not Joseph those psychologists were talking about; at the moment it seems to be me drifting into insecurity, incompetence, depression, anxiety, drug addiction and suicidal tendencies.

Thank God for my spiritual foundation. At times like these I turn within, and Spirit brings to my mind a story originally told by the Buddha:

There was a Zen master who, while out walking one day, is confronted by a ferocious, man-eating tiger. He slowly backs away from the animal, only to find that he is trapped at the edge of a high cliff.

The tiger snarls with hunger, and pursues the master. His only hope of escape is to suspend himself over the abyss by holding onto a vine that grows at its edge. As the master dangles from the cliff, two mice – one white and one black – begin to gnaw on the vine he is clutching on.

If he climbs back up, the tiger will surely devour him, if he stays, there is the certain death of a long fall onto the jagged rocks. The slender vine begins to give way, and death is imminent. Just then, the precariously-suspended Zen master notices a lovely ripe wild strawberry growing along the cliff’s edge. He plucks the succulent berry and pops it into his mouth. He says, “This lovely strawberry, how sweet it tastes.”

Ah, the beautiful, lovely, amazing present moment. Nice to be back, where danger is no longer imminent and where I trust that, if I can stay open, I will be guided to say and do the right thing at the right time.

strawberryThis lovely strawberry, how sweet it tastes.

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.  😉

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.

This is a picture of, from left, Carl, DJ and Joseph. That’s Lana’s hand on Carl. With hubby/dad Fred, they moved into our guest house for 12 days in June, left for a while, and have now moved back there for a couple of months while they house-shop.

Joseph and the boys have become fast friends. DJ is the oldest: a mature, sensitive five year-old, he and Joseph play together the most.

They were playing together the other day, jumping on the trampoline, talking, laughing, in general having a great time. A short while later, when I checked again, Joseph was sitting all alone on the trampoline, enveloped in a cloud of sadness. He looked lost and confused.

“What’s going on?” I asked casually.

“I don’t know,” Joseph replied. “DJ is mad at me and I didn’t even do anything!”

As we continued to talk, it turned out that the “anything” Joseph didn’t do involved throwing a nerf football hard into DJ’s stomach, making DJ cry and run for home.

“If it was me, I would apologize,” I say, using my Love and Logic consultant approach.

“No, I won’t do that, but I’ll go check on him,’ Joseph said, running off for the guest house. Before long, the kids were playing again.

Scenarios like this repeat themselves over and over again with the boys. Joseph needs so much practice on the social level. It is deeply embarrassing to me that he doesn’t understand seemingly basic things — that he needs a real person to ‘throw things at’ before the feedback is strong enough for him to get it.

Yesterday he roared at DJ, “I don’t want to be your friend anymore!” This was a comment he’d picked up from a fellow friend on the spectrum and he obviously felt the need to try it out himself. Poor DJ sobbed and sobbed.

If the roles were reversed, i would feel protective of my boys and try to shield them from this kid who ‘should’ know better. But Lana is pretty amazing. She is a special ed teacher, so she comes equipped with an understanding most people don’t have.  She speaks frankly about the problems but she always seems willing to let her kids have another go with Joseph. I keep waiting for her (or the boys) to say, “We’re done! Never again!” but so far it hasn’t happened. What a godsend this family is!

And Joseph keeps learning. After yesterday’s incident we had a long discussion and then he, on his own initiative, wrote himself a reminder list. This is what it says:

Behave nice
Give Carl space
Give DJ space
Be nice, play nice
No hitting, no smoking

(I don’t know where he got the no smoking part from…?)

He posted it on the outside door so that he can look at it when he plays.

There is a bit of a bully in him. I think he likes to create a strong reaction in the little kids — both likes it and feels sorry afterward.

I feel lost to help him. Relationships are dynamic things, shape-shifting around all the time, — so the truth is that, in most ways, Joseph  has to work it out himself. I can help him reflect afterward, but most of it is on him.

Maybe that’s what makes it so hard. I can’t seem to prep him enough to make it a success; he’s got to learn out in the ditches. It makes me cringe.

But the Divine choreography of bringing in this family with great kids and a mom who gets, and really appreciates, special needs, gives me hope. Maybe I can’t help Joseph that much, but the real One in charge is really in charge, and I need to give it back to Him/Her. I’m not so good at giving back my burdens, which is probably why I’m here, unable to sleep, at 3am.

So, once again, I take a deep breath. I leave the land of worries, where my grown child resides alone with no friends, and land back in the present, where I can trust that much is happening beyond my little perspective. That a loving God has it all in His/Her hands, and that my job is to leave it there.

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?

Sometimes I play this destructive, useless game called, “Who would I pick for my kid if I hadn’t gotten this one?”

It came up big time on Wednesday. I am the art docent for the second grade, which means that once a month I go into Joseph’s class, line up reproductions of paintings, and speak about them. Then we do an art project related to the theme. It’s a lot of fun, and the kids love it.

When my mind tortures me, it’s usually with visual scenes rather than words. It’s been replaying Wednesday’s visual a lot. There I am, speaking about how artists portray birds. The kids are attentive and engaged, enthusiastically raising their hands to make a comment or point something out in a painting.

That is, 17 of the kids are engaged. One has his body turned sideways, with his head turned toward the back of the room. I know you can guess who I’m talking about. At one point I decide to call on him anyway.

“Joseph,” I say, “What is one word you’d use to describe this scene?” It is a beautiful, realistic painting of eagles soaring in the sky. Joseph turns toward the front, says, “White, blubbery, blurry birds,” and looks backwards again.

It was after that that I started to play the “Which kid would I want other than mine” game. That night, crying to Blue Eyes, I told him that I would take 16 of those 17 kids over the one I got. The only reason I passed on one kid is because he’s terribly whiny and rebellious.

Yup…compared to neurotypical kids, Joseph is no picnic.

Kai and JoeToday we went to Abilities Basketball, which allows people with disabilities, physical or developmental, to get the sports experience. It is non-competitive, supportive, and great fun for the athletes. Kids with Downs, kids with brain damage, kids in wheelchairs, kids missing chromosomes…you name it, they’re here.

Looking at the various disabilities of these kids, I started playing that game again. I know, I know — I should give up this game. But looking around at the others, I saw how great it was that Joseph walks and runs on his own. He can shoot the ball into the hoop on his first try. Physically, he looks neurotypical. He understands what he’s doing out there on the court. So this time the choice was easy: Joseph won, hands down.

Neurotypical friends. Joseph has his chin in his hands.

Neurotypical friends. Joseph has his chin in his hands.

I feel he doesn’t really fit in anywhere – that he’s stuck somewhere between neurotypical and impaired.

Joseph, on the other hand, feels he fits in everywhere. I don’t think he sees any difference between the kids in class and the kids on the team. They are his friends, they are fun, and that’s that.

As an art docent, I occasionally come upon a painting that looks at a scene from an unusual perspective. It is fun to look down, rather than up, at a bird soaring in the open blue sky.

This is what I come to after a week of playing the torturous “Which kid would I pick” game: God must have his own perspective, seeing me in ways I do not. He knows what I most need. He knows my karma, my tests and trials, where my deepest growth needs to take place.

One time, Yogananda was involved in a ritual where he gave a rose to each of his students. One woman didn’t want the yellow rose he handed to her; she wanted the red one. The Master said, “You take what I give.”

What I need is what God gives me. And God gives me Joseph. May I have the grace to embrace my son for all that he is and all that he is not – to love him fully, and trust that God has a greater perspective than I do on this one.

No more destructive game-playing. This week is about fully accepting, embracing and trusting what already is.

Blessings.