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When it was really bad 7 or 8 years ago — when Joseph didn’t sleep and I didn’t sleep and we were socially isolated and our marriage was hurting and anxiety constantly gripped my heart — Blue Eyes dragged me to a doctor for my first prescription of sleeping pills. This doctor was a spiritual friend and, on follow-up visits to get more meds, he would recommend that I take time out. Specifically, a seclusion – a time of silence for meditation, reflection and rest. But Blue Eyes was working a lot, we had no family who would take it on, and I felt too panicked to entrust Joseph to anyone else’s care. Those were by far the toughest years of my life.

chakrasA few years ago, I started taking seclusion again. Not for a whole week like I used to, but for 2 or 3 days at a time. Seclusion is where I am now, in fact – sitting on the deck of a private cabin in a spiritual community, with a view of tall trees and hills and the melody of a river some distance away.

I don’t “do” much when I’m in seclusion; I become a human being instead of a human doing. I meditate more and my mind gets quiet. I feel my connection with all. I remember that I am a spiritual being dancing around in a human body for just a short time.

And of course I reflect about Joseph. Who we have now is so different from the Joseph of 7 or 8 years ago. All the work we did? It was so worth it. Teachers and school psychologists comment on how different Joe is from other autistic kids – they say they can see the results of that hard work. So can I. He will always have autism, but my hope and prayer is that it will be something he manages and something that doesn’t define his whole life. It looks like it’s headed that way. God willing, it will be.

Most autism parents don’t do the hard work. I can’t blame them: It’s HARD. You have to face the autism and your own demons about it. You have to give every ounce of yourself to it. You have to spend time (lots), money (lots), and energy (all). And then it’s a crap shoot, because maybe it will work and maybe it won’t.

Because I’m in that world I know a number of autism kids, and it’s obvious who has been worked with and who hasn’t. The one who makes my heart ache the most is an 11 year old boy who desperately wants to connect with people. Not all autistic kids even want to connect – but this one does, and he’s never been coached. Human dynamics has never been broken down for him. Thus he is reduced to asking a isolationconstant barrage of annoying questions like, “What’s your favorite number?” Or “Which ‘g’ word do you like best?” Unless something changes, this kid will never have the deep connection with others that he craves – and when you desperately want connection but can’t access it? That must be a terribly sad thing, and I fear the worst for him.

On the other hand, I know a couple of other autism couples who have done major work with their kids, and yet their kids won’t ever fit into society’s standards of “normal.” Still I’m positive that, without that work, those kids wouldn’t be nearly who they are now. And I think they have enough skills that they will find their place, and their own, in this big old world.

There is a time to work like crazy, and then there is a time to stop. I wonder what would have happened if I’d followed that doctor’s advice and taken time for seclusion even when life’s waves were tsunami-like. I probably would have managed the anxiety better. The rest would have been so good for me, and stepping out of the storm to get a little perspective, to dive into Spirit, could have made a big difference.

But it was what it was and, with a ton of grace, I am now able to enter seclusion. Sitting here in the quiet, with nature’s beauty all around, I am grateful. Not just for this moment but for the whole journey. Though I never would have consciously asked for it, autism has taught me so much, and through it I have become more trusting, more aware, and more compassionate. So thank you, God. Please don’t do it again to me — ever! — but thank you. 🙂

Namaste’.

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One never forgets the day someone comes to evaluate one’s child for autism. In my case I had called around to a couple of local agencies to ask what to do when you suspect it, and I’d been referred to what was called Infant Program. The two leaders of the program came to visit. Two year-old Joseph sat in the living room, his back turned to us, while we talked.

They weren’t sure, but they suspected I was right about the autism and asked me to bring him along to the program. Their parting words were, “Stay in his face all the time. Don’t let him go off into his own little world.”

So far I’d been raising Joseph the opposite way. I would marvel at what an easy kid he was, looking after himself while I cleaned the house or whatever. It was a big deal to drop everything and stay in his face all of the time, but  I did my best. Then tutors started coming, and they stayed in his face when I wasn’t. Later, when we got involved with Relationship Development Intervention, I learned to use the many opportunities life gives us as a way to keep Joseph constantly engaged and relating.

Ten years after that visit from Infant Program, Joseph has turned out to be a very social kid — more social than his introvert mama! He loves his friends, is now inviting himself to their homes for sleepovers, and is still (sigh) asking us for a brother.

What I am learning about puberty, however, is that it’s time to step out of his face. Joseph is getting more private about things: going into his room and shutting his door, not readily letting us in when we knock. He got some time to play with Minecraft yesterday, and he sat underneath a blanket to do it so that I couldn’t see (and yes, I’m sure it wasn’t porn – we have filters set up 😉 ). Almost 48 hours went by recently without my seeing him, as he was with friends and at swim team, sleeping in in the mornings while I snuck out to work for the day.

It is an odd new practice for me. I am so used to being in his life, connected umbilically. It is natural that he  pull back — this is what puberty and teenagerdom is about — and yet it’s hard to get that “stay in his face” advice out of my head.

One of Love and Logic’s most beautiful teachings is that, when there have been or are going to be times of separation, like before bed or first thing in the morning, the parent touches the child in some way — as if to say, I missed you. So good to connect again. Our morning touching used to be a huge hug that we both loved. Now, when I try the hug, Joseph shrinks back. I find other ways: walking by, I’ll put a hand on his shoulder — but our cuddle times are now precious and few.

Sometimes I have to give myself a talk about the shrinking from touch and the decrease in connection. This is not the autism, I say. This is puberty. This is natural, this is right. It’s different, but it’s not bad. Panic is not necessary.  

I know that’s so. But the withdrawal kind of looks like autism, you know? So I get to work with myself.

Recently my dear friend Terese texted me. She’d been in the shower, thinking about something else entirely, when out of the blue she was given some advice that she knew she HAD to pass on to me. Dripping wet, she stepped out of the shower to put it into a text before she forgot the words. They were:

Remember: He is not the same person he was two years ago. If you can change, so can he. Trust in the process!

My dad, who passed away some years ago, was a seeker like me. At turbulent times we’d say to each other, “Trust the process.” I truly felt that my dad was speaking to me through Terese. I was reminded how very supported we are, by beings both seen and unseen.

Now, I am replacing the advice to “Stay in his face” with “Trust in the process.”

Wishing you trust in your process, and awareness of how very supported you are. Blessings.

 

 

 

 

Yesterday I bumped into a friend. It’s funny; I can’t say she is a close friend because I see her only rarely, and yet, when we do stop to catch up, there is no small talk. Instead we go immediately to the depths of our journeys, sharing the challenges, the growth, the roads we’re on now. What is a close friend if not that?

Janine watched her husband slowly and painfully lose his mind, his voice, his body, and finally, just over a year ago, his life. Now she and the kids are carving out new footholds, healing the raw aching places, and moving forward. As Janine says, that chapter of their lives is over now and it’s time to see what’s ahead instead of what was behind.

I think about that with Joseph. I remember how, after getting through four years of not sleeping, a year of enemas, intense years of medical and alternative treatments, we saw some great breakthroughs. A dear friend said, “The worst is over.” I didn’t believe her — but, from this vantage point years later, I think she was right. The worst appears to be over.

While Joseph took a shower tonight, I ran to the piano and started to play. He’s started lessons lately and it’s inspired me to play again, the piano being one of my great loves. But I knew I could only play for a short time because, in the past, Joseph would scream and yell bloody murder if I tried to play. This time he finished his shower without me knowing it. When eventually I stopped playing, he asked if I would please continue.

(Who are you? And what have you done with my son? On second thought, never mind. I’ll keep you instead.)

One of the things I’ve deeply grieved was that I wouldn’t be able to speak of spiritual things with a child who has autism. Au contraire! My son has declared himself to be a Christian Yogi, like his parents. He is earnestly and deeply interested in spirituality. Today, after months of his urging, I finally drove him to the Catholic church so that he could see inside it. While we were there, he asked if we could go for service to every church and temple in town, so that he could see what they were like. How can you say no to a request like that?

dressed upHe’s got a big crush on one of the girls in his class. With only a little encouragement from us, he’s decided to stop picking his nose, start washing his hair, and learn to cook and clean so he can be a more eligible husband. He is even dressing up for special occasions!

While the thought of his hopes being crushed stabs my heart, all I can do is encourage him to go for it. Joseph is full of surprises, so who knows what will come?

So here, in this new chapter of our lives, I let go of the terrors of the past and turn to experience this moment. Thich Nhat Hanh says, “All the elements for your happiness are already here. There is no need to run, strive, search, or struggle. Just be. Just being in the moment in this place is the deepest meditation.”

Big exhale.

Wherever you are in your journey, I wish you hope, trust, comfort and presence.

One of the trippy things about having a kid with autism is that, unless your kid happens to be displaying autistic symptoms right at that moment, s/he looks pretty normal. This is why having to take my ten year-old, normal-looking son into the ladies’ bathroom is an excruciating process for me.

It’ll be like this: we’re out and about, miles from home, and Joseph or I needs to use the bathroom. So far so good, right? We walk to the facilities and, naturally, they are separated into men’s bathrooms and ladies’ bathrooms.

(Allow me a slight digression. In Australia, they are labeled “Male Toilets” and “Female Toilets.” I always wondered, how do they know the gender of a TOILET? But, as I say, I digress.)

This is where we run into trouble. As usual I will say, “Do you want to try the men’s?” And as usual, Joseph, filled with anxiety, will answer with a resounding “NO!”

Still, every now and then he will actually open the door and stick his head in. Then he’ll pull his head out and say, loudly enough for the poor, innocent man to hear, “I can’t go in there. There’s a MAN in there!” Or he’ll just say, “I can’t! I’m too scared!”

And so, here we go again. Into the ladies’ bathroom, me and my ten year-old, normal-looking son.

Now, Joseph knows full well that it’s weird for him to be in the ladies’ bathroom. Believe me, I’ve tried to shame him out of the practice any number of times. But instead he hurries into the bathroom, rushes into a stall, closes the door, and asks loudly, “Mom! Where are you?”

Once he’s figured out that I am close by he continues his interrogation. “What are you doing, Mom?” “When will you be done?” “Aren’t you done YET, Mom?” Then, just for a little extra entertainment, he’ll start in with, “Mom, there’s another woman in this bathroom! Help me, Mom! Help me!” (This latter statement is because he’s embarrassed to be in there — thanks to me — and doesn’t quite know what to do once more women arrive.)

The good news is, once Joseph starts acting like this, people quickly figure out he’s got a disability and I can show my face again without being embarrassed. So, see? It all works out. Ha ha.

You could say that it’s yet another thing I need to surrender to. You could point out that it’s the practice of building humility through humiliation. But please don’t. I’m just not in the mood to see the longer-rhythm good that could come out of this.

bathroom signWe are on vacation in Oregon. Beyond the horrid days like the one I outlined in my last post, we’ve been truly enjoying ourselves. And THIS is a sign I saw outside an Oregon bathroom at a campground.

Glory be! I LOVE this sign. I want this sign on every public bathroom from here to Timbuktu.

But until that happens, can you do me a favor? If you see some normal-looking kid in the wrong gender bathroom with his/her parent, just smile pleasantly and look the other way. It’s not nearly as bad for you as it is for that parent. You can trust me on that.

Dear Friends,

family at Six FlagsThis year has seen some changes in our journey with autism. Joseph’s RDI Consultant stepped down due to a disability and, because we live in a small town, we had no other local options. Our state funding agency will not fund a long-distance consultant, so we have had to forge new ways of helping Joseph to continue to grow and manage his disability. Fortunately, RDI’s focus is on training parents, so Blue Eyes and I feel qualified (at least so far) to deal with the issues that have arisen.

One new strategy that we’ve added to our tool belt this year is Love and Logic, an amazing parenting approach. It has helped Joseph to see that there are logical consequences to his behavior, whether positive or negative. The screaming in our house (not just his!) has lessened considerably due to the Love and Logic principles.

Joseph is also in a social skills group with two other boys. It’s run by a speech therapist who really has a heart for special needs kids. She has helped Joseph to get the idea of what it means to be in a group, which has been very helpful. These kids don’t get the group thing by osmosis, the way most kids do, so the therapist breaks it down into little pieces and spotlights various concepts, such as keeping your body in the group.

This year Joseph has taken some big leaps: riding his bike by himself (and, at 9yo, we thought maybe it would never happen), making some friends (mostly younger, but who’s complaining?) and generally being more confident in his world.

Autism parents have a unique niche in the world of kids with disorders. No one tries to get parents to cure their Downs Syndrome kids or kids with Cystic Fibrosis, but not a month goes by without someone sending me a link, or stopping me in person, to tell me they’d heard about someone who cured their child of autism by eliminating MSG from their diet or giving them 4-hour saunas every day, or whatever. I know these people are well-meaning, but it is hard for me not to 1) feel resentful and 2) feel guilty that I haven’t cured my child. I have no doubt that the stories are true, but not every kid who takes daily 4-hour saunas achieves recovery! We have tried so many interventions that feel we should just relax around it…if only we could…

I’ll end with a description of last night’s school holiday concert. Four years ago, in Kindergarten, Joseph spent his time on stage either flapping excitedly or turning his back to the audience. Three years ago he wore sunglasses on stage because he was sensitive to the lights, and mostly just stood around looking out at everyone while the rest of his class sang. Two years ago he sang pretty well — they gave him a shaker to keep the beat and to keep him busy.

This year takes the cake. Not only did Joseph sing with his class, he stepped up to the microphone with two other Christmas concertboys and sang a trio. He forgot some of the words and I could see him paying close attention to where the other boys were so that he could catch up with them. Co-regulation, in RDI verbiage, and a very nice thing it is.

As Joseph’s parents we were, of course, happy and relieved. But what blew me away is all the parents who stopped me last night and this morning, telling me how they cried when Joseph sang in the mic, how it was the highlight of the concert for them, how proud they were of him. Once again I realized that we are not alone in this. Joseph’s autism is the whole village’s project, and they take a personal investment in it.

I am grateful, and awed, about the way God works through autism to touch and change us all. Our troubles are also our joys if we can hold them up and put them where they belong — in God’s hands.

Wishing you a most blessed holiday.

Yoga Mother, Blue Eyes and Joseph

Do you ever just step back and admire the mind, with all its stories and games and tricks? All its envying and resistances and fears, all its ‘what-ifs’ and ‘why me’s’ and ‘oh no’s’?

I know I do. I mean, it never stops its play. Oh, maybe here and there, at a life highlight or an amazing meditation, but mostly the mind just goes on and on and on. And when you have a big thing like a child with autism, the mind gets tons of grist for its mill.

I have consciously tried not to blame my son for his autism. In something reminiscent of the Christian policy of loving the sinner but hating the sin, I have loved Joseph but I have hated autism. I have despised autism, cried over autism, obsessed about autism, resisted the fact of autism, worried relentlessly about autism, and cursed God because of autism.

It’s different now. This is because I recently heard a spiritual teacher, Gangaji, speak about the enemy. I am paraphrasing her here:

She says that the mind, in its restlessness, seeks out entertainment. Obviously there are many ways in which the mind is entertained, but she got specific, singling out how profoundly the mind is entertained by war.

This war, I assume, is not just nation against nation, but conflict within one’s own little world, or even with oneself. And in order to have a war, Gangaji says, the mind must first conjure up an enemy.

Since hearing this, I have been watching my mind conjure up enemies. They are everywhere! If I am running late, the red light is an enemy. If my husband snores when I have insomnia, he is the enemy. If one of my closest friends gets depressed and doesn’t contact me for a while, she is the enemy. Basically, anyone or anything who does what I don’t want them to do becomes an enemy.

Ooooh, enter autism. Autism is the club nobody wants to join. Raise your hand if you agree. Ok, don’t — I can’t see it anyway.

Here’s the thing: Gangaji goes on to say that when we’re truly ready for peace, we stop conjuring up enemies. There simply IS no enemy anymore.

It’s really quite simple. We are either resisting, or we’re not. ~ John Astin

Don’t hold me to it ‘cuz I may change my mind (literally), but right now I am choosing peace around autism. Autism is not the enemy. Even God — the one I blame when all else fails — is not the enemy. Autism just is, and I am not going into war over it. I will do all I can to help Joseph realize his full potential, but that, too, can be done peacefully, without fear or worry or even urgency.

When that resistance stops — and when I stop being in a war even with the war — then there is peace. Gangaji defines peace as the absence of entertainment.

It’s a nice place. I watch the attachment to this nice place come up and I smile: There is the mind again. Now it wants to make being anywhere but in this nice place an enemy.

Wishing you presence, awareness, and the ability to witness — rather than believe — the mind in its playing.

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

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

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

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

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

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

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

Kahlil Gibran says:

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

* * *

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

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

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

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

Which, of course, is where he is anyway.

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

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

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

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

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

Your grip’s too tight.

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

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

But grip I did.

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

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

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

But.

It’s time to relax the fist.

It just is. It simply is.

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

…and free fall.

free fallEver wonder what it feels like
to free fall?

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

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

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

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

* * *

My arm is getting better.

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

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

But I won’t.

Have you ever struggled with a problem for years and years? Doubted and worried and despaired about something for a long time?

I have. For many years, Blue Eyes and I have struggled over the issue of who would look after Joseph if our demise should come unexpectedly early. Our solution — not dying — is a good one, but not, ahem, entirely under our control.

Asking someone to take on a child with autism is tough. When it came to naming a guardian for Joseph, Blue Eyes and I felt that we would be placing a heavy burden on whoever we asked.

This wasn’t the case with my friend, Maya. She called her brother to ask if she could name him as her (neurotypical) son’s guardian. He replied that he’d love that. But the bad news, he continued, was that he was going to have to kill her so that he could be sure to have the kid.

Sweet, huh? We didn’t get quite the same response when we asked some relatives to be Joseph’s guardian. We got a no — and I understand. Perhaps, were the roles reversed, I would be the one saying that.

Who takes on an autistic kid voluntarily? I wouldn’t have done it in a sane, rational mind-set. On the soul level I obviously chose it, but most of us folks with skin on operate rationally.

It’s just different living with autism. Your kid needs you a lot more than the typical kid. You don’t get the same opportunities you might otherwise get. It’s restricting. While it has its own rewards, it doesn’t give one the satisfaction one has with a typical child. It’s draining. It’s exhausting. And you don’t know if it will end with their adulthood. You don’t know if it will ever end.

What are we supposed to do — ask someone we love to take on this eternal intensity? As I said, this question has had its tentacles running through our lives for many years.

I have a friend who runs several adoption agencies. She says there are, indeed, families who open their arms to special needs children. They welcome them — they want them. These people have a calling I don’t have. They must be saints. It’s good to know that these people are out there.

For some years, that was our plan: if we were to die while Joseph was a minor, he would go to one of these families. It was sad to think of turning him over to someone he didn’t even know, but it was the best solution we could come up with. But then we had to ask, what about when he was an adult? What if he couldn’t be independent? Ugh. Nasty, ugly dilemma.

Not long ago we had another inspiration: We have a friend, Robert, who we consult with from time to time about autism. He knows Joseph well, we like his values, and he and his wife already have children, so they get parenthood. With trembling fingers we sent an email popping the question (we figured an email would give him time to think and discuss with his wife).

They said yes. They said yes! People want Joseph – people who would go into this with their eyes wide open. God bless this man and his wife. We are so fortunate to have them in our lives.

Something in me came unglued, in the best way possible, when we got that yes. A tight fist released. A held breath let go. The shoulders dropped a couple of inches.

“Why do you doubt?” Yogananda once asked one of his disciples. Indeed, why do we doubt? Everything is a symbol for everything, I think. Worrying so long and intensely about guardianship is a reflection on my own self-doubts. Who, after all, looks after me? Does Someone really do so?

Lately I’ve been meditating on the word let. Let means invite, open the door, allow, choose. I let myself feel supported. I let God show me the way. Robert and his wife let in the possibility of a real life-changer by saying yes to guardianship.

Always there is the presence of God, right here and right now. All we have to do is let that presence in. It’s a sweet, simple shift: a heart opens, a mind stills, a prayer ushers forth, and there God is. There God always is.

Why do we doubt? I guess because all the best stuff — the angels that surround us, the love that’s constantly flowing to us, God’s whisper in our hearts — is quiet, is invisible, is behind the veil. If we could just know we were held, we could stop trying so hard to hold ourselves — and others — up.

May you and I let in the angels, the love, and the still, small voices. May we let in the possibility of a Guardian way beyond anything we can figure out with these rational minds.

May we know, in the depths of our being, that this Guardian looks at us, with all our goods and bads, and, with infinite love and not a moment’s hesitation, says, “Yes.”

Here’s to the pilot that weathered the storm. — George Canning

Joseph’s only been in second grade for a couple of weeks but it seems that, academically, this is where the feces starts to hit the rotating oscillator. Joseph asks me, “Can I go back to Kindergarten? Kindergarten was fun.”

Sigh. No, Joseph, you can’t go back. You must weather the storm as best you can, even as the intensity increases. That’s all any of us can do.

Tonight was Back to School Night, where the parents drop their kids off in the cafeteria to watch cartoons while they visit their kids’ classrooms and hear a talk by the teacher.

The cafeteria is not a fun place for Joseph. It is noisy and full of unpredictable kids. Blue Eyes and I discussed ahead of time that we might need to do what we did last year when Joseph couldn’t handle it: He and Joseph would walk around the campus while I visited the classroom. Afterward, we would go to the ice cream social as a family.

But life is messy, and autism makes it messier still. Joseph indeed couldn’t stay in the cafeteria for cartoons, so he and Blue Eyes hung out. Blue Eyes was feeling sick, so, after fulfilling his duty with Joseph, he went and lay down in the car. Joseph and I headed into the cafeteria for the ice cream social and stood in line. Around us kids loudly goofed around, and parents talked and laughed. The sounds ricocheted around the  room with a life of their own.

Joseph’s shoulders edged up toward his ears. His jaw set and he started wriggling around, as if trying to physically remove himself from the situation. But the ice cream wasn’t far away, and he managed to keep himself together enough to attain the coveted goal.

I admire the way Joseph navigates the world, managing his sensitivities. In this case, Joseph wanted the ice cream but not the social. As soon as we got the ice cream, he suggested we eat somewhere outside the cafeteria. He chose a spot out by the playground. No one else around — just him and me. The sun was setting and the clouds were peachy fire. The goats nearby maaaahhhhed and the breeze blew softly on us. It wasn’t the ice cream social, but it was lovely.

Not a bad way to weather the storm, really.

He is starting to think about two things more often: God, and his future living situation. You know me — I’m loving the talks about God. Is God big? Yes, but he’s also teeny tiny. Did God make the rivers? Yes, but he also is the river. God is the drop and God is the ocean. And that big ocean? It’s completely contained in the drop. I could talk about this forever.

So far, Joseph envisions his future living situation like this: a house next to Blue Eyes’ and mine, one that he helps to build, with lots of pets and a swimming pool. Oh, and no girlfriend or wife.

Kind of like an ice cream social without the social.

Maybe this is how Joseph will navigate through his future. Maybe things will change and he will want that girlfriend or wife — or at least a housemate or two with skin on. I am willing to leave these things unanswered for now, and to honor the way my son chooses to carve out his life.

Though his choices may well navigate him out of the noisy cafeteria, I pray that — like tonight — he ends up in a place that feeds his body, stimulates his mind, and nurtures his soul.

Lately I’ve been talking to parents with really challenging autistic kids.

Now, without a doubt my kid is challenging. But he’s not violent to other kids. He doesn’t consistently disrupt his class to the extent that he gets moved to the severely impaired classroom. He doesn’t pinch his sister, consistently and hard, and absolutely deny the accusations. He doesn’t refuse to go poop in the toilet and go daily, instead, in his underwear at the age of six. He doesn’t come at me with knives.

That last paragraph is full of true situations. It’s full also of exhausted, bewildered parents.

A mom I spoke with today thought she was the only one who ever lost it with her special-needs kid and laid into him with anger. Ha! These kiddos seem to specialize in taking us to our edge — and often over our edge. I think that we parents, while working to control our emotions, need at the same time to be compassionate with ourselves. Our road is not easy, and adding guilt and shame creates a heaviness that makes it even harder to run the race.

And what a race it is. Not a sprint but possibly a lifelong marathon; not an easy lope but an intense run littered with potholes and unexpected obstacles.

Here’s what I’m learning from these parents: even as they struggle with the race, the race is struggling with them. It takes ordinary people and makes them do extraordinary things. It gives them more patience, compassion and insight than you’ll find in many others. It breaks them open so that God can come strongly through.

It is humiliation causing humility.

When I lived in spiritual community, a 12-step group came for the weekend. The minister doing Sunday service spoke about how, when you are really in a state of need, it’s so much easier to call on God. He said, “It almost makes you wish you were an alcoholic!”

The 12-Steppers were very upset about that.

But still. There is something to needing God urgently that makes us so much less complacent than the average bear. I don’t think God cares if we have cancer, or have been in a horrible accident, or have an autistic child, if it brings us closer to him/her. That is, after all, the end goal. The means is simply a means.

So how do we approach this marathon we’ve been given? I like what it says in Hebrews:

And let us run with endurance the race God has set before us.

As the Olympics begin, I ponder one of the competitors, Oscar Pistorius. He is called the Blade Runner, or the fastest runner on no legs. A South African, this man runs with incredible speed using prostheses. He says, and I’m putting it in its own paragraph to give it emphasis:

You are not disabled by the disabilities you have. You are able by the abilities you have.

Now, here is an ordinary man doing extraordinary things, literally running the race God has set before him with endurance. And courage. He inspires me to think, not of Joseph’s disabilities, but of the things that truly make him able.
And me, too.

If Oscar can run the race with endurance, so can we. Living bravely, remembering that this is all a play of God, we too can be made into  extraordinary people.

Let’s do it, shall we? I mean, we’ve been handed this race called autism. What would it mean to run like the wind, even if we have no legs?

Blessings.

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.

We have friends whose daughter just went in for emergency surgery. Annie had a melon-sized growth in her torso that the doctors removed, but along with the growth came a large amount of muscle mass that she will never have again. Annie has been an active, vibrant young woman, and her life will never be the same.

Annie’s mother spoke tearfully about it to Blue Eyes today. She said, “You guys have been through a lot with Joseph – medically, emotionally, and otherwise. How do you do it? How do you bear it?”

It’s a good question, and one to which there is no simple answer. But in this post, I’d like to explore how a parent bears it when their child is limited or in pain.

Right off the bat, I’d say it’s a journey, not a destination. I’ll go weeks where I’m feeling okay about having a kid with autism. I’m pretty sure I can handle it and, even though it’s got its rough moments, we are navigating our way through.

Then something will happen. Maybe I’ll spend time with my friends, for instance, who have neurotypical children. To me these kids seem always up for an adventure, whatever it may be. They run over to grab my hand and engage with me. They are – well, the way I think kids should be.

Did you hear that word I used? Should. Should can get a person in a lot of trouble. I start shoulding all over myself. I touch in yet again to that sad, tender place inside that wishes – oh, wishes with all my might – that my life was different. That I had one of those other kids. That feels I should have gotten one of those kids instead of the one I got. Or, at least, since I got one with autism, that I should be able to handle it better.

Wheeeee, off I go into a downward spiral. Oh, and by the way, I shouldn’t be going into a downward spiral.

It’s the mind trips that kill you. Future tripping, past regretting, if onlys, shoulds. It’s the comparing mind that looks over there instead of focusing on the here.

All that stuff — mind tripping, comparing, etc — they all lead to pain and suffering. There is nothing else inherently causing my pain. I have met the enemy, and it is me.

I pray. I cling to the robe of the Master. If I can’t find it in me to open to God, then I find my breath. I breathe, slow and deep. What I love about the breath is that it’s always in the present…you can’t breathe in the past or the future. So being mindful about the breath gets me back here. It lessens the craziness of my mind.

I remember that this journey is a marathon, not a sprint, and that I need to pace myself, even take time out sometimes. I remember what a wise friend told me: one has to learn to trust even when in pain. So I renew my trust – again and again and again.

There is so much more going on than I can see in my little perspective. If, indeed, God is a just and loving God, then I have to trust that what’s happening is supposed to happen. My son has his own life lessons, his own karma. That part is out of my control. For my own sanity, I must let go of what’s not mine and give what’s God’s back to God.

Perhaps the last way I have to bear it, but so very much not the least way, is friends. When I can’t take another step, my friends hold me up. Sometimes it’s just a phone call to another autism mom to say, “Hey, it’s rough over here. Talk to me.” Sometimes it’s a heart to heart with lots of tears. Whatever form it takes, it’s a sweet balm.

Autism parents, we are not in this alone. We have each other – and, even if it’s just through the internet, we can lend a virtual ear, a shoulder, a word of wisdom.

At some point, the downward spiral changes direction. Coming back into the here and now, I breathe a prayer of gratitude for what we have, for the challenge we’ve been given to grow through, for the chance to breathe the air of this earth.

And once again it hits me that it’s not about waiting for the storm to pass. It’s about learning to dance in the rain.

Just for today, then, I’m going to dance. Letting the cold, wet stuff from the heavens fall all around me, I’m going to celebrate all that is, all that isn’t, and all that is yet to be.

I am on a cleanse. It’s for health reasons. This is a more drastic cleanse than I’ve been on in years, in that you don’t eat even one shred of food. You drink lemon juice, water, maple syrup and cayenne, but you don’t eat. I’m on day 3 of a 10-day journey.

I just popped a gluten free bagel into the toaster for Joseph. When it popped up, I stopped and inhaled deeply the scent of bagel — which, even being gluten free, smelled good to me in my current condition. Still, while I enjoyed the scent, it didn’t clutch at my heart, or even at my stomach. I was happy to butter it and hand it over to Joseph, free of attachment.

Why? Because I’m at choice.

I choose to be on this cleanse. It is making me feel better. Therefore, I intentionally shut off the part of my mind that desires food. It amazes me that this can happen.

Being at choice is empowering. There’s no resistance or struggle, because one is actively making the choice. It gets the energy going in a positive, upward direction. Grace can happen when one is at choice.

So, I ask myself, where in my life am I most not at choice? In other words, where am I most disempowered? Where is the most resistance and struggle?

Ohhh, I immediately know the answer: In my relationship with autism. With Joseph, and the fact that he has autism.

Why do I bother struggling with reality, I wonder. Resistance is, well and truly, futile.

Byron Katie’s work comes to mind. She says if she ever gets a thought that might be stressful, she questions it very specifically. I’m applying her questions to this predicament:

Joseph should not have autism. Is it true?

Yes, it’s true! No one should have this debilitating disorder! No one should have to be the parent of a kid with this disorder!

Joseph should not have autism. Can I be absolutely sure that this is true?

Oh crap, I can’t know for sure that it’s true. Maybe, in a cosmic perspective, he should have autism.

Joseph should not have autism. How do I react when I believe that thought?

Massive inner turmoil. Cramping in my stomach. A tight heart.

Who would I be without that thought?

More peaceful. Accepting. Open.

Then we turnaround the “Joseph should not have autism” statement.

Maybe Joseph should have autism? No, I mean, maybe he should have autism. No, not maybe. Here we go:

Joseph should have autism.

How do I know? Because he does!

Ok, this is not sitting perfectly with me, but I’m going to work on it. I don’t want to look at sensitive, impressionable Joseph with all these negative judgments floating around my aura. I want to look at him with unconditional acceptance.

I want to be at choice with autism.

One of my favorite Byron Katie quotes is, If you fight with reality, you always lose. She interchanges the word reality with God. The way I see it, resisting reality is resisting, and shutting out, God. Being at choice, on the other hand, opens up the door between me and God. Therefore I am choosing my son to be exactly the way he is. When I do this, I can feel my heart open and the grace pouring through.

This is a choice I plan to consciously make every day, or every time I need to, until it becomes such a habit that I don’t need to think about it anymore.

When I look at Joseph I’m going to think, I choose you.

When something is really great, Australians say, “CHOOOOIIIICCCCE.”  Now I see why.

I was an est-hole early in life. My dad, who was a seeker back when seeker-dom was not trendy, entered me in the est training when I was 11 years old. While studying self-growth at a young age had its good points and bad points, one of the things I learned there has recently become relevant in my relationship with Joseph.

It’s the but-and difference.

I might say, for instance, that I’d like to be with my husband but I want alone time. In this case, one point negates the other. I can’t be with Blue Eyes because I’m choosing to be alone instead.

In other words, it’s either-or. Either I’m with Blue Eyes or I’m alone.

On the other hand, I could say that I’d like to be with my husband and I want alone time. This doesn’t kill off one option in favor of another; rather it holds both options as happening in the realm of possibility.

This is not either-or; this is both-and. I get to be with Blue Eyes and I get alone time.

Enter Joseph. It has recently occurred to me what a great kid he is. He woke up around 6:30 the other morning and, when I came in to rouse him at 7, he was busy with blocks. “I’m building, Mom! See my school? This is room 3.” Yesterday I came to pick him up from school. We started walking toward the car when Joseph said, “Hey! Where’s my hug?” and gave me a big embrace. Warms the heart, that one. 😉

He’s a great kid, he really is. Funny and smart and goofy and loving. It used to be that all this was negated, in my mind, by the autism diagnosis. He converses pretty well, but he flaps his hands. He gets along in a mainstream classroom, but he chews.

And the overall perspective: He’s a great kid, but he has autism.

Truly, this is how I’ve viewed my son. Everything else he is got cancelled out because of autism. Ugh. If I was into guilt, I could think about how my limited outlook has shaped my child, but I’ll try not to go there.

Here’s my new point of view:

Joseph is a great kid. And he has autism.

Yes, both these things are in the realm of possibility. They can, and are, happening concurrently. I have a really great kid who also has autism.

I love this! It’s a subtle shift, but often those subtle shifts are the ones that shape our subconscious and the very way we see, and interact with, the world. If the Universe is always and only ready, then my seeing Joseph differently  allows the Universe to give me the evidence I am now looking for.

And I do see it. More and more I see this amazing child who I get to hang out with.

All my life I’ve been attracted to people who are different. Scheming to sit next to the tiny midget on the bus so that I could strike up a conversation with her. Bringing home a transient so that I could get a glimpse of his life. Reading anything I could find about people who are blind. Covertly watching deaf people converse. Traveling to foreign lands to soak in other cultures. Making friends with people from other countries. Marrying an alien (Blue Eye’s official legal title).

In my mind, different is good. Different is interesting. Different offers us interesting new perspectives on life.

Except for my own child. His difference has been a bad thing, a disastrous thing. Something that’s devastated our lives.

Byron Katie would ask, Who would you be without that thought?

Peaceful. Happy. Content.

I will strive always to help Joseph improve himself, just as I strive to improve myself. But in life, if we are wise, we learn to foster our strengths and manage our weaknesses. This is what I do, and this is what I will endeavor to help him do.

It’s not all over because my kid has autism.

I have a great kid, and he has autism.

Both. And.

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

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

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

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

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

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

Joseph being goofy

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

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

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

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

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

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

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

Joseph is really into the movie Harry Potter and the Sorcerer’s Stone. He insists someone watch it with him, so  he and I have watched it about half a dozen times in the last few weeks. And I still like it…mostly.

The last time I watched it, I was struck by the relevance of the Mirror of Erised. According to Professor Dumbledore, when you look into this mirror you see the “deepest and most desperate desire of one’s heart.” Thus Harry looks into the mirror and sees his long-dead parents alive and well, smiling and nodding affectionately at him.

As I watched the movie I wondered what I would see if I were to look into this mirror. In a flash I knew the answer: Me having a long, back-and-forth conversation with Joseph about some meaningful topic. Life lessons we’ve learned, observations we’ve made, the condition of the world, the existence of God — any of those will do, as long as we are engaging with each other in a deep, powerful way.

As I continue to look into the Mirror of Erised, I see that this conversation is with a neurotypical Joseph. Not one trace of autism in him.  Joseph is really listening, reflecting deeply, sharing back from his heart.

I want that mental/emotional connection with him so badly. He is snuggly and cuddly, so I get the physical engagement (and am well aware that many autism parents don’t), so I get lonely for mental/emotional. It’s definitely the deepest, and most desperate, desire of my heart.

But I know it won’t work to spend my life staring into the Mirror of Erised. Harry finds this out too, after he spends the better part of two days gazing into the mirror. Then the wise Dumbledore comes and tells Harry that people have gone mad in front of that mirror, not knowing if what they have seen is real, or even possible.

It does not do to dwell on dreams and forget to live. Remember that,” he says.

I think that all of us have a deep ache or two, something we’d see healed if we looked into the Mirror of Erised. Perhaps that’s just part of driving around in human bodies on this planet. The human condition, if you will.

I was fortunate to spend this past weekend with my brother, Aaron. We are both hovering around the half-century mark — me just above it, him just below it — and dealing with bodies that are more painful than they used to be. Aaron’s got a great solution: instead of popping more Ibuprofen to block the aches and pains, he’s focusing on increasing his pain threshold.

According to Wikipedia, and I quote: The threshold of pain is the point at which pain begins to be felt. It is an entirely subjective phenomenon.

Entirely subjective. Hmmmmm. I’ve read that there can be two people with the exact same spinal injury (bulging disks, that sort of thing). One of them is in extreme pain and the other doesn’t even feel it.

Sounds like maybe we can change our perception of pain — do ya think? Let’s extrapolate a little further.

If we can change our physical threshold of pain,why not our emotional one? Why not raise our consciousness and be bigger than our emotional aches? I’m not talking about suppressing or denying our emotional sorrows. I’m talking about acknowledging them without identifying with them or giving them too much energy and attention.

If we’re living bravely, after all, we can see that these sorrows are a part of life. They deepen us and open us and stretch us in ways that we wouldn’t previously have thought possible. So we could possibly,  theoretically, welcome them. Embrace them. And still know that, while our sorrows are a part of us, who we are is more than them alone.

Dean Acheson said, “I learned from the example of my father that the manner in which one endures what must be endured is more important than the thing that must be endured.”

I choose not to spend my life looking into a mirror of dreams. I choose to be courageous, to increase my ability to endure what must be endured, and to do so in a manner of trust and openness.

It’s the way of the spiritual warrior, it’s the way to inner peace, and it’s the way I want to live.

It isn’t easy, but the best things rarely are. I won’t be perfect at it, but I’ll continue to practice. One day at a time. Today I am practicing courage. Endurance. Inner strength. Acceptance. Trust.

It does not do to dwell on dreams and forget to live. Remember that.

I am walking to a more trustful place. A place where I don’t have to have it all planned out, don’t have to try so hard, don’t have to work on it so much. A place where life is easier because I trust that, in each moment, I will have what I need in that moment. Not what I need five minutes from now, but what I need now.

Trusting that, when I need guidance on something, like why Joseph is eating tissues (called PICA – the eating of non-foods – common in autism), I will get an answer. Maybe not the whole answer but definitely a first step, a direction – like calling our old naturopath, who’s moved out of town but who can possibly work with us long-distance or steer us to another doctor.

How do I know it’s right to reach out to the naturopath? Because after I did it, I felt sooo happy inside. Like those heavenly helpers who hover around sent a message of confirmation: Way to go, Yoga Mother. Thanks for listening!

If, indeed, I am so supported by the Universe, then it is a given that so is everyone else. This includes my friend’s grown son serving time for murder, and another friend who just crashed into a tree and has 16 broken ribs, and my father who recently died of Alzheimers — and of course, Joseph, who has autism.

Held, supported, loved, looked-after Joseph.

What if we could see them, these angels, these helpers. What if we could trust our hearts, which feel them when they’re open enough. What if we listened to those little whispers of love, of guidance, and felt their truth all the way to the core of our beings.

This is the way I’m walking.

To me, being present is acknowledging how much of life is beyond our senses. It’s getting a glimpse of how much more is going on than our minds can understand. It’s being open, listening, and trusting in all of that.

The path ain’t always gonna be pretty. The kid I expected – the one who was precocious and clever and talented and communicative – that one didn’t turn out to be my kid. The more I rue the past and rant and rage against what is, the more miserable I make myself. Really? Am I being clever and talented myself?

Done with that in this moment. Joseph is a gift. It all is, but Joseph’s the one with the huge bow on top.

This is the way I’m walking. A bit on the outside looking in still, but trying out a step or two and liking the way it feels.

Liking the way I feel when I turn more to God – turn it over to God. Liking the person I’m becoming when it’s less of me and more of God.

It can only happen in this moment. It can’t happen five minutes from now because that’s not where I am.  So here I am, present to the Presence, and filled to overflowing.

Blessings.

Joseph and I were having lunch the other day in a little cafe when the sweet face of a Downs Syndrome boy suddenly popped up at our table. This boy couldn’t speak too well but he obviously wanted to make friends with Joseph, and we had a delightful little interaction.

When he’d gone, Joseph said, “That’s James from my summer program!” I figured it couldn’t be, because this kid seemed a few years younger, but I checked it out with his mom and confirmed that he was not James.

Later on, I told Joseph that the reason this boy looked like James was because they both were born with something called Downs Syndrome, and I explained a little bit about what that meant.

I intentionally have conversations like this with Joseph from time to time, because, brick by brick, I’m laying down a foundation. We’ve talked about people who have no arms and who have learned to use their feet to eat, paint and play with toys. We saw a cognitively-challenged girl not long ago, and I used the occasion to talk about people who move and think  differently from the rest of us. Not that they’re any less than the rest of us — just that God’s given them a special role to play.

I go through life with a Special Needs lens on. I notice people with special needs so much more now than I used to, and the truth is I take more delight in them than I used to. I admire these souls who have come in with such courage, daring to be different in a society with major conformity issues. I am at ease with them even if they’re “deformed”, using a breathing tube in a wheelchair. This is just another gift that Joseph has given me.

Maybe one day Blues Eyes and I will tell Joseph that he, too, thinks differently from most people. That God gave him a special way of looking at life and that we earthbound people call it autism.I’d expected to tell him long before now, but it’s simply never come up.

Why hasn’t it come up? It’s said that when we’re very young we form impressions about who we are and the world around us. From then on, we unconsciously accumulate evidence to confirm our impressions.

For example: Remember my last post, where I couldn’t grasp how to tie a certain knot and was secretly convinced that I was handicapped? I was in the mentally gifted program at school; I got lots of accolades for being smart. And yet there I was, unable to do this knot and convinced it meant I was slow, stupid, mentally damaged. Because I had severe low self-esteem as a child, I attached myself to the external evidence that matched my internal conditions.

I can only gather, therefore, that Joseph does not have the internal condition of being different in a bad way from others. He has never asked us why other kids are okay in noisy crowds and he’s not. He’s never asked why he flaps his hands when none of the other kids do. He simply accepts himself as he is, without a lot of mental accusations.

This is great! And it may not last forever. Quite possibly, as Joseph gets older and awareness increases on both his part and in the kids around him, he’ll be told, or he’ll see for himself, that he is different. The experts say that this often occurs in 4th grade — as, not coincidentally, does an increase in the autistic child’s level of anxiety and depression.

That will be the time to have the autism talk.

What will we say? I’ve thought about this through the years, and I still don’t have a hard and fast answer. Something about how his brain is wired a little differently than most people. That this wiring makes it harder to understand social cues. That he has an extra sensitivity to noise and overstimulation than do most of us.

But just as I make it a point to talk about how all of us have certain gifts, I will do the same with autism. Sensitive people are the poets, the artists, of our world. Different people think outside the box and therefore can come up with ideas and solutions that would never occur to the rest of us (Bill Gates, for example). I collect articles about autistic people and how they’ve turned their challenges into gifts — and I will present these to him.

Hopefully Joseph will take the understanding of autism not as a reason to limit himself, but as a way to understand himself better and take advantage of his strengths.

When the time comes to talk about autism with Joseph, I pray for the wisdom to present it to him in a way that helps without hindering, that expands awareness without labeling.

I also have a prayer for myself. I pray that I see Joseph as an amazing soul who happens to have autism. I pray to remember that this soul chose autism as a way to help himself and many others, including me — definitely including me! — to grow.

Last week I attended a presentation on bullying and special needs children. I learned that not all special needs kids get bullied. The ones that are really different — seriously impaired, for example — don’t get bullied much. It’s the ones who fit in, but don’t fit in, that can get the royal treatment.

That would, of course, be kids like Joseph.

Bullied children fall into two categories: the submissive or passive victims, and the provocative ones. Special needs kids are likely to fall into either of these categories.

Lately I’ve seen Joseph go from the passive type to what could be seen as provocative. Up until recently (like last week), he’d look at someone and say loudly, “That’s a fat girl.” I think I’ve finally drilled into his head that we don’t comment on people’s body size in public, but it’s just a matter of time before the next inappropriate thing comes up. Autistic kids don’t have the social barometer that comes so naturally to the rest of us. Joseph could easily, and innocently, piss off a kid on the playground — the number one place for bullying.

But you know what? I’m not worrying about it. I went to the presentation to get the facts and to learn what Joseph and I can do about bullying, but I am seriously and intentionally not worrying about it.

Here’s what I am doing:

I am focusing on being present and developing what I need now in order to deal with whatever comes later. The thing about the present, to quote C.S. Lewis, is that “there, and there alone, all duty, all grace, all knowledge, and all pleasure dwell.” It’s only by being present, which to me means aware, open and connected, that I can be prepared for that future stuff. This goes for bullying, financial crashes, and happy Christmas days.

I learn to listen now, when it’s easier, so that I may still be guided and connected later when, perhaps, it’s more difficult.

Fear lives, not in the past and very rarely in the present, but, by and large, in the future. In our fantasies about what could happen. In our “mind stuff,” as the yogis put it. We weren’t given the ability to peek around the corner at our future. We weren’t meant to, I figure! Yet these fears we have, which we project into the future and which seem so very real, have got to be one of the best tools that the Dark Side has.

In a rapid switch from the Dark Side to the Light, I will bring in Yogananda, who said we should have our feet on the ground and our head in the clouds. I love this analogy. With my feet on the ground I learn about bullying, and with my head in the clouds I trust that, wherever Joseph goes, God is.

It seems to me that this is truly a place of peace. Finally letting go of the need, or the imagined ability, to take care of it all myself, but nonetheless doing my part. Finally trusting that God’s love is a real thing — something constant, steady, and deep that will hold Joseph and me tenderly through the rest.

Is it just me, or does everything end up back at God? 🙂