It finally happened. Blue Eyes and i have seen a clue or two and we wondered if it was coming – but yesterday it definitively happened.

Dallas let Joseph know that he is DONE being his best friend, DONE being his friend at all.

Joseph has autism. He doesn’t gain the understanding of how to be a friend by osmosis. And as social mores change in puberty, he has not adapted. Sometimes he seems like an 8 year old hanging around preteens.

To make matters worse, obsession, which often seems to link arms with autism, formed in Joseph’s feelings toward Dallas. He thought about him, wrote about him, spoke about him, dreamed about him, sang silly songs about him (the latter in front of Dallas’ peers). He joined sports teams that Dallas joined. He shadowed Dallas everywhere he went. I experienced the shadow thing during the cruise and it nearly drove me crazy. Poor Dallas didn’t get a break.

Being the good guy that he is, Dallas put up with it way longer than he probably should have. Now it’s boiled and spewing out of the volcano, and it is OVER.

But he couldn’t tell Joseph. I had to be the one to do that. Gulp. When we teach Love and Logic we often show Dr. Brene’ Brown’s short video clip on empathy, and I leaned on that when I told him.

It broke my heart, truly it did. I had to tell him, as gently as I could, that Dallas wanted nothing to do with him any longer. Ouch ouch ouch. Joseph was understandably sad. We talked about the shadowing, the silly songs, the way Dallas felt embarrassed in front of his friends. And Joseph felt that Dallas was 100% right. He immediately wrote Dallas a letter apologizing and saying that, from now on, he would give him lots and lots of space.

As painful as it all is, it’s also what we’d call an affordable lesson. This is a great time in Joseph’s young life to learn what being a friend involves. As a kid with autism – which most definitely includes a huge social deficit – friendship-forging will take actual studying, strong observation, and perhaps (finally) listening to his parents’ input (one can hope, anyway!).

In A Course of Love, we are told that there are truly only two ways to go: Fear or love. My mother’s heart keeps jumping from one to the other, but as I was reflecting tonight I remembered the concept of putting trust into the gap. This is the idea that, when there is a gap between what we expected to happen and what actually happened, we always get to choose what we put into that gap: Blame, suspicion, trust, etc. Take your pick.

Suddenly removing Joseph’s best friend creates a gap in what we were expecting, and I am choosing to intentionally put trust in there. If, in deepest love and benevolence, life is giving each of us exactly what we need, then all I can do is trust that this situation falls into that category. Whatever difficult and/or lonely times lie ahead for Joseph (and, therefore, his mother!), I want to stay in trust and gratitude. Oh, I might jump over to fear too, but ultimately I choose love.

Yesterday we had the painful conversation. This morning Joseph sang me a song he’d made up, a rendition of Shiny from the movie Moana. Whereas the actual lyrics go, “I’d rather be shiny,” Joseph’s sang of Dallas’ leaving and the chorus was, “I’d rather be happy,” declaring his determination to be happy regardless of losing this friendship.

Fortuitously, Joseph and Blue Eyes had an overnight camping trip planned for tonight. Blue Eyes texted that Joseph is already thinking of ways he can be friends with other kids. So, God bless him, my kid is showing resilience and understanding in a time of trial. What a kid!

I am reminded of the woman in Australia who, when the earth started violently shaking, threw herself down upon it and embraced Mother Earth in her movement. And so I end this post with an intention to embrace the change, trust the gap, and, above all, to be thankful. Because those things, my friends, have me choosing love — the only true reality — over the great illusion of fear.

 

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How can love always be present when you can undeniably feel each and every absence of love? The problem is in the perceiver rather than the perceived. Each time you feel a lack of love, it comes from within yourself. — A Course of Love (ACOL) – 25.5

Blue Eyes and I are world travelers. But autism, with its difficulty with transitions and unpredictability, can add an interesting twist to traveling. Although hubby and I would rather travel immersed in different cultures with backpacks on our backs, we have long wondered if a cruise might work for Joseph. We’d always stay in the same room, additional family members (including cousins close to his age) wanted to go, and there would be a swimming pool. Google didn’t have much to say about autism and cruises, so we took a deep breath, and literally jumped on board.

7 days, Seattle to Alaska and back. From the standpoint of day 6, I can say that it’s been pretty good. The kids have had a blast together, and the food has been amazing. Fortunately, Joseph’s cousins are on a non-sugar diet and that has influenced him in a positive manner, yeast being a common problem with autism. We’ve had FUN, real true fun! There have been moments, of course, when it’s not been so fun, but overall it’s been beautiful, spectacular, and awesome.

Today we are on the boat all day, so Joseph’s cousins went to the Kids’ Club for the first time. I pulled the manager aside and explained that, even though he is 13, Joseph has high-functioning autism and will only be comfortable hanging with his younger cousins, ages 6 and 8. I was told that they’d need to contact the manager onshore to get this okay’d, and that they’d be in touch in a couple of hours. So, while the younger boys went happily off to play ball games, Joseph howled about having to leave with me. It was a not-untypical semi-meltdown, but it hadn’t happened before in front of other family members, and I found it humiliating.

Joseph didn’t want to do anything else – just have downtime in our stateroom. I can understand that: There is lots going on in this huge boat full of thousands of people, and downtime can be a balm. But A Course of Love gave me an exercise to do a couple of days ago, which was to watch for feelings of a lack of love. And — wow! — it came up big time through this little episode of explaining the autism situation, being put off (hopefully just temporarily) and then feeling exposed with the meltdown.

As I look more closely at that, I see how much lack of love I have around autism and Joseph behaving like, well, someone with autism. First off, I feel really alone. Then I feel resistant, upset, wishing yet again that I didn’t have this in my life. I feel out of control when I really, really, really want to be in control. I don’t want this uncomfortable life, where my kid can unpredictably bring me to these hugely embarrassing experiences.

Attempting to exert control over learning situations is a reflection of belief that you have nothing to learn. Control opposes openness. – ACOL 23.27

(Insert expletive here.) If my life is indeed a curriculum designed specifically for me, then opening to it is my best chance of learning from it. Yes, Joseph has autism. Yes, sometimes it takes us in different directions from the normies. Yes, I find it difficult and therefore want to make it safer and easier.

Resign as your own teacher. The desire to control is the desire to remain your own teacher and/or to choose your teachers and learning situations. Neither can occur if you would truly choose to change your beliefs and move on to the new or the truth. – ACOL 23.27

I want to resign as my own teacher, really I do. I guess this particular teacher, which we shall call Autism, feels that public humiliation is just right for me – and therefore delivers it on an irregular, but fairly frequent, basis. This will help me out of my need to be in control, and probably in a lot of other ways, as well. I surrender. This time.

There is always an upside to the downside. Joseph can’t stand to be alone in the stateroom. So, while he’s been having some downtime inside the room, I’ve been sitting outside on the balcony writing this. I keep having to put the computer down because pods of dolphins are swimming by and, my heart in my throat, I have to stop everything and marvel at them. I mean, we are way out in the ocean, and there is so much life and beauty here.

The ocean’s gone from glacier-green to sea-blue in the last day. We’ve left the whales, who like to feed in the cold Alaskan waters, and found the dolphins. The sun is at last showing itself, and the endless blue of the sky mirrors the huge blue vastness of the ocean.

It is a big, beautiful world and, as I look out at it, I open to its beauty. The view from our balcony looks like love made manifest — and I am opening to the fact that it all is. Everything, from autism to Joseph to the glory of this moment — comes from love. And love embraces all things, so, in that spirit, I open to allow it. What a beautiful teacher is life.

 

I have a close friend who is deeply Christian. This is unusual, because generally I steer clear of Christians — for the sole reason that they tend to regard my spiritual outlook as, well, dead wrong. I get the impression that, though they think I’m a nice person, they also think I’m headed straight for hell once this earth journey is over. I don’t mind if they think that, but it doesn’t make for close friendships.

For this reason it took me a long time to mention A Course of Love to my friend Ellen. After all, A Course of Love (ACOL) is said to be Jesus’ words coming through Mari, a woman who is alive and well in this day and age. When I did finally mention that I was co-leading a group on Friday mornings, I hoped we could leave it at that. But she’s seen how this course has shifted me, so she asked for specifics and even indicated an interest in attending. I gathered up my courage and explained how ACOL came about, dreading an anticipated response that the Bible was Jesus’ only true word and the only one we’ll ever need.

Ellen is a surprising person, though, which I guess is why she’s my only Christian friend. She said, God spoke through prophets way before Jesus’ time. Why wouldn’t Jesus continue to speak to us now? Then she attended and felt that the words really spoke to her. I don’t know if the course will stick for her, but I am really, really impressed that she attended.

It is amazing to feel Jeshua (most ACOL people refer to Jesus in this way, which is the Hebrew pronunciation) permeating my heart, mind and soul. I mean, wow, it’s like he’s whispering into my ear sometimes. That’ll change your life. For the first time ever in this life, I have actual experiences of joy.

It’s interesting to feel so fed spiritually on the one hand, and to have an intense 13 year-old autistic kid on the other. I understand why so many families stop having kids after an autistic one shows up – they are a lot of work! Add to that the hormones and turbulence of teenagerdom and, wow, that’ll change your life too.

I am so grateful that Joseph has friends. He invited his two besties over last week to hang out. It was the first visit for one kid, the sweetest Aspie (Aspergers) kid I’ve ever met. Within the first five minutes, he’d pointed out the spider web in my dining room, but never mind. We autism parents overlook that kind of thing. 😉

For the last few months I have taught yoga to Joseph’s 6th grade class in the barely-clandestine hope of getting him interested in it. While it succeeded with most of the girls, it’s been an “Eh” experience for the boys, which I can understand. Most hatha yoga classes are 95% female, after all.

Through the years, Blue Eyes and I have tried to get Joseph interested in yoga and meditation. It would be so good for his anxiety – and everything else too! But Joseph has resisted it at every turn, so we have dropped the subject for the last few years.

However. Tonight I was listening to an amazing guided meditation by a man associated with ACOL, someone Jeshua speaks through. It led me to a very deep place and I experienced the Christ presence pouring through me. I can’t remember the details of the conversation with Joseph, but later on we were talking and I said, “Well yeah, especially when Jesus is speaking to you.”

“WHAT?” Joseph exclaimed. “JESUS?” We talked about Jesus coming through these channels, and he was incredibly interested. I realized that, for him, Jesus was some dude from way back when who’d told people to love each other and who’d been dead for a long time. “How can I talk to these people?” He asked me. “There’s so much I want to know about my future.” I said that the message from Jeshua was to learn to listen within, to get quiet enough to hear that still, small voice in oneself. It’s about a relationship between each one of us and him.

Joseph asked some questions then about meditation, and I guided him through a 5-minute session. It ended very positively, and we agreed that we’d do that every night before bed.

Once again, wow. Not only does Jeshua still speak and write, he also still works miracles. A little meditation practice could go a long way in helping my kiddo through the teen crazies. Thank you, God.

Just wanted to add that, after the third difficult day on vacation, God gave me a Love and Logic inspiration. Love and Logic recommends that parents have “private” conversations now and then, within the hearing of the child that they are discussing, in order to praise what s/he has been doing well or working hard on.

I tweaked this a bit in a difficult moment on the morning of day 4. I pulled Blue Eyes aside and said, in a stage whisper, “Joseph has been behaving so badly. I know he really wants to go to Las Vegas on the way home, but I suggest we skip it.” Blue Eyes immediately caught on and replied, “I don’t want to go to Vegas. I agree!”

At which point Joseph began pledging good behavior from there on in…and that is exactly what happened! The rest of the trip was much more enjoyable.

I might add that Vegas is not really a place for kids with autism. Joseph found it terribly overwhelming and overstimulating. Afterward he said, “I made a bad choice wanting to go to Vegas.”

So we we struggled and we enjoyed and we learned. Much like life itself.

Blessings.

As spring break loomed on the horizon, Joseph began asking about going to Arizona. He’d never been there before and he wanted to see Sedona and the Grand Canyon. He also wanted to see Las Vegas, which is on the way.

I had recently quit my regular part-time job and am hysterically happy about having spare time.  Blue Eyes was up for going, and we like to encourage adventuring in Joseph…so a vacation was born. We’d spend about a week and a-half driving to and from, and exploring the wild west.

Friends told us we would have a wonderful time. Arizona was one of their favorite places and it would be amazing. To most of them, I smiled and said I was looking forward to it. To one of them I explained that Joseph could have a hard time with change so it would probably be challenging. To Terese, who has an autistic kid of her own, I said that Joseph could be such a pill on these trips that it would no doubt be difficult.

Perhaps “a pill” wasn’t quite the right expression. Sleeping in new places is usually difficult for Joseph, going to new places (especially crowded ones) is difficult, and not getting his way is also hard. All three of which are happening on this trip to some extent. Add to this the fact that Joseph had recently finished a round of antibiotics and was displaying pronounced symptoms of autism and candida (much flapping, fingers constantly in mouth, etc), and we were headed for quite a time.

Yesterday was day three and was supposed to be “his” day. We had made it to AZ and had booked a train ride up to the Grand Canyon. Challenge #1 occurred when Joseph went to sleep late and woke at 4am, resulting in three straight nights of sleep deprivation. We arrived early at the depot to watch the cowboy shootout but, as soon as the first “shot” rang out, Joseph screamed and cried and would not be calmed down. Blue Eyes quickly ushered him out of the bleachers amidst the looks of curious families.

My impression of age 13 is that the volume’s been turned up big time. Joseph’s always been one for constantly making noise (“verbal stimulation” in the vernacular), but it’s really gotten worse lately. Walking around the incredible, breathtaking Grand Canyon naturally inspires a reverent silence — but my constant companion was a nonstop noisemaker which was, to put it mildly, draining. And disappointing. Yogananda used to say that, if someone got your goat, they got your inner peace — so don’t let them get your goat. Well, my goat went galloping down the canyon and I haven’t seen it since! So my disappointment was for both the experience of the canyon and in myself for losing that goat. ;-(

At one point, in a small crowd, a little chipmunk appeared. Of course everyone was thrilled to see the cute little guy. Everyone else, that is. Though he was quite a distance from it, Joseph started screaming in anxiety and the only way to calm him down was to find a quiet place in which to sit for half an hour.

I sound like I’m blaming Joseph but I also blame myself. Before the Grand Canyon trip, I forgot to pack nutritious snacks and had let him load up on carbs (hotel breakfast, anyone?). Things have been quite good with Joseph — many breakthroughs this year — and so I thought this trip would be easier than it is. I didn’t prepare myself for a difficult day, so the fall was greater. The idea that expectations set us up for being disappointed at some future point certainly applies here — but the expectations were so unconscious that I didn’t realize they were there until, well, now.

Speaking of now, it is 2:20 in the morning and I am in the hotel bathroom, typing away and dreading the fact that Joseph may wake up anytime and give us yet another difficult day, tainted by sleep deprivation. Is it an autistic thing that he simply can’t nap during the day unless he’s deathly ill? And if positive expectations bring future disappointment, what does dread bring? As my own private guinea pig, I hereby postulate the following effects of dread: Insomnia (did I mention 2:20am?), negative mindset, and separation.

Ah yes, separation. Where is God in all of this? Of course I know that God IS — but I’m not feeling the Love. What if I just take a moment to soften my body and open my heart. What if I close my eyes, take a few deep breaths and release some resistance.

Then I realize that the thoughts are not my thoughts. They come from I know not where and they go I know not where. They are there, but who I AM is something much greater.
Jaw softens, shoulders drop. Heart remembers.

And then, oh gloriously then, there it is: The felt inner communion. The spaciousness of Spirit, more breathtaking than any grand canyon. A shared silence filled with understanding and even amusement. A remembrance that this is just a tiny blip on the radar of life, and especially of life beyond. The reassurance that always, always I can come to this place – no matter what is happening externally. In this I can rest. Time to go back to bed.goat

Hello, little goat. Welcome home.

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.

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.  😉

fair2016bThrough the years in our little family, there has been a subtle but growing attitude of autism being not okay. Blue Eyes and I — and, for that matter, Joseph’s school and doctors and therapists and specialists — have all attempted to “normalize” this kid. And it’s succeeded pretty well. This school year the last major sign of “I’m different” got removed when Joseph insisted that he no
longer wanted an aide. The school staff, bless them, respected his decision and has pretty well phased the aide out. It’s going okay — his academics have declined but we’ve never expected him to be a scholar, and his level of independence has increased dramatically. At this point you’d have to sit down and get to know him a bit before you could figure out that he’s not exactly typical.

Cause for celebration, right? Well, hold on, hoss, because we are being shown another perspective.

Blue Eyes and I just completed a fabulous 4-day playshop (as opposed to workshop) on awakening to presence. Wow! Life is different when you tune into that expanded awareness, that conscious presence, and truly grok that you embody it at all times. Many gifts were received during the playshop, and one of those was our attitude toward autism.

We were talking about how sound can be a doorway to presence: music, gongs, nature sounds, etc. The instructor pointed out how we tend to filter sound rather than allowing all sound to be in our awareness and to help us access presence. During the break, I asked the instructor, John Mark Stroud, about autistic people, who often can’t filter sound.

He said that most autistic people were highly advanced souls who couldn’t quite fit the whole “typical” scene. He said that many came in with amazing gifts — not savants, but highly gifted.

Nice, right? Well, I didn’t think so. With incredible resistance I responded that it was hard to imagine a 14 year-old in diapers as an advanced soul and that no, they didn’t come with gifts.

Later, Spirit (and Blue Eyes — thank you, honey) spoke to me about that strong reaction. I realized that, of the autistic kids I know, there truly are gifts. One is amazing at technology. Another plays the piano so beautifully it can make you swoon. Our own kiddo deeply loves, and is so loved back, by his classmates. His imagination and creativity are incredible.

As I opened to that, Blue Eyes and I had conversations about how we’ve normalized Joseph — and was that a good idea? I mean, how great is this “normal” life anyway? We spoke again to John Mark, who suggested that we tune in with Joseph on a soul level when we’re with him (and when we’re not). He suggested that we let Joseph teach us some of his gifts, that we appreciate the amazing soul he is. That we step out of the parent role and enjoy being presence together. That we open to the soul agreement we’ve had to incarnate together as a family.

For many months there has been major tension between Blue Eyes and Joseph. But that evening at home, they sat together on the couch and there was peace. Joseph’s stomach was hurting, and Blue Eyes brought him a bowl and helped him while he vomited a few times. It’d been years since Joseph vomited, and later, when I asked him how he felt, he said he’d gotten the bad stuff out and felt better.

We mentioned this incident to John Mark the next day – how Joseph had maybe eaten a bad burger at the restaurant. John Mark said that no, what had happened was that Joseph was vomiting out the toxicity that had been in our relationship with him. Wow, what a perspective.

Since then, it’s been a whole new relationship. Joseph still flaps his hands and jumps around autistically when he’s excited or creative, but it doesn’t trigger us. In fact, it seems pretty cool. I had the opportunity to give one of Joseph’s friends, another kid with autism, a big birthday hug, and I could feel his energy rising up his spine when he felt my unconditional love.

Something stiff in me has melted. Last night I thanked Joseph for coming to be with Blue Eyes and me, and he responded very simply with “You’re welcome.” Later, when Blue Eyes said good night to him, Joseph said, “Thanks, Dad.” He didn’t say for what, but Blue Eyes knew. Thanks for opening to who he is, thanks for appreciating the gift he is and the gifts he brings.

I woke at 3:00 this morning and asked Spirit why I was awake. The response was that my soul was longing to express this. Thank you for reading. I pray that, if autism is in your life, you too may open to the soul agreement you and your beloved made to be together, and that the gift of it fills your heart.

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’.

Professor Temple Grandin, perhaps the best-known person with autism next to Rain Man (who, I remind you, was a made-up character), once commented that we need to keep the lives of our autistic kids interesting. I have pondered this many times over the years, agreeing with her that presenting new and exciting adventures to Joseph keeps him interested, engaged and challenged.

But when your kid has anxiety — which is extremely common for people with autism — it has to be looked at slightly differently. bell-curveOur RDI consultant once drew us a bell curve like the one to the right. The line in the center separated the two sides. To the left he wrote “Productive” and to the right he wrote “Unproductive.” There is a point, he explained, where challenge simply becomes unproductive. While you don’t want to make Joseph’s life too cushy (too far left), you also don’t want to immerse him in events that produce unproductive anxiety (right).

But anxiety is unpredictable and often irrational, so you don’t quite know what is going to push someone over the edge. Like last week, for example…

We went camping. Fun, right? Blue Eyes and I both come from camping families and we have wonderful memories of the adventures we had on those trips. Joseph was excited: we camp every year for a few days so he knew, more or less, what to expect. Blue Eyes had even fixed up our relic of an RV, and we took that along (I happily spent the nights in a tent next to them.)

anxietyThe first morning, anxiety struck. Why? Who knows. Dogs were leash-only, so that was okay. Maybe being out of the routine? Somewhere new? We were in Lassen National Park: Volcano territory. Like a volcano, Joseph’s anxiety built up and exploded out – hot, fierce and uncontrollable.

What we forgot since we last went camping is that campgrounds provide a great view into other people’s lives. There is nowhere to hide a kid who is loudly expressing his fear, resistance and anguish. Think humiliation.

On the other hand, other people couldn’t hide either. We watched happy families with excited kids who were loving — and making the most of — every minute of their camping experience. Living so openly, side by side with typical families, really got to me for a while there. I felt terribly sad.

By the third day of some difficult times, Blue Eyes had a brilliant insight: Part of Joseph’s anxiety had to do with the structure of the day. If we’d done a morning hike and returned to the campsite for lunch without any particular plans for the afternoon, this was perceived by Joseph as a high-stress situation. Whereas Blue Eyes and I looked forward to a few empty hours, our kid did not. He’s not like this at home, but we had to roll with what was happening there. It worked to say, “Let’s take half an hour to rest and then go for a bike ride.” It didn’t work to say, “Let’s do whatever we want for the afternoon.” This helped. A lot.

Looking back, I don’t think I handled the anxiety well. I was irritated. I hated that others could see and hear our troubles. Why couldn’t Joseph just reason himself out of this? Why was he behaving in such a ridiculous way?

But the beauty of reflection is the learning that comes from it. I don’t fully understand Joseph’s pain and I doubt I ever will. But rather than judge him (to take another view of the bell curve: unproductive behavior), I want to feel compassion for him and support him (productive behavior). We are going to get to work on this anxiety, starting with an Ayurvedic specialist who focuses on kids with anxiety.

During one of the low points of the camping trip, Blue Eyes pointed at our sweet dog and said, “That’s our gift.” Then he gestured toward Joseph (who was out of earshot) and said, “That’s our work.”

Paramhansa Yogananda, in a letter to one of his devotees (though I think in actuality all of his devotees), said,

Everybody’s difficulty is different and he or she has to win that test of karma…I will never give up my job about you….Not only will I ever forgive you, but ever lift you up no matter how many times you fall.

This, I believe is the work of us parents, especially those of us with special needs kids or rebellious kids or troubled kids. Our kids come in with their own karma and their own tests. We can’t change that, but we can let them know that we won’t give up on them. We will ever forgive them, ever work with them, ever help them to be all they can be.

Dang, it’s hard. But here I lean on Yogananda again, with these excerpts:

I shall ever be with you and through Divine Mother guard you from all harm, and will constantly whisper to you guidance through your loving self.

So do not become discouraged and tired…

A smooth life is not a victorious life — and I will give you lots of my good karma, so you will get through.

…not only will I invisibly help you but visibly, through many here.

IMG_1977Opening to receive that good karma. Exhaling a big exhale and allowing my own anger, resistance and anxiety to dissolve as I remember, yet again, that this work is much greater than just Blue Eyes and me. The Universe offers unlimited support, if only I allow it in.
Blessings.

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.

 

 

 

 

“Mom, I can’t find my swimsuit!”

“Bummer. What are you going to do?”

Little exchanges like this are true Love and Logic moments. Don’t take on the kid’s problem, Love and Logic tells us. Turn it back to your kid with the simple little “What are you going to do?” question.

Is this applicable to special needs kids? You bet your flappy hands it is — perhaps more so even than typical ones. Special needs kids really need a focus on thinking for themselves, handling their own challenges, and doing things without reminders. Is Love and Logic harder for parents of special needs kids? I believe it is. It is super easy for us to be overprotective of our kids, to want to set things up to be a success for them. To protect them from not experiencing the consequences of their disability.

Love and Logic made such a difference in my life as a parent that I got trained to be a presenter. A few times a year now, I co-teach a six-week series with my friend, Ellen. This is one of the many gifts brought to me by autism. Standing up there and being really authentic about our own struggles helps the parents share what’s going on in their lives. Parents don’t attend these classes because their family lives are working: we might get parents who are having all-out arguments daily with their kids, or forcing kids into massive rebellions with their parenting style, or who are about to just plain give up on their kids. It’s sobering. And humbling. And amazing to watch how the simple techniques of Love and Logic can make such a difference.

A huge part of Love and Logic is the concept of empathy. Not sympathy, where you’re feeling sorry for your kid (and often want to avoid or fix the pain)– but empathy, where you go down the rabbit hole and feel with your kid. Let’s say, for example, that we make it very clear that we’ll take our kid to the ballgame if his/her room is clean by noon.

No reminders from the parent once the expectation is clear.

Noon comes and — you guessed it — the room is still a mess. Before we deliver a consequence, we first express genuine empathy: “Oh, this is so sad. We can’t go to the ballgame.”

If the kid is anything like my Joseph, begging begins. “Oh please, Mom. I’ll do it now, fast! I really will! Here I go!”

“Oh honey, I know this meant a lot to you, but what did I say?”

Then come the tears. This is where I will hug my son warmly and tell him how much I love him, how I’m sure he’ll do better next time. And that, as they say, is that.

Such a powerful little lesson: If we don’t meet our expectations, there are consequences. Is this an understanding that will be meaningful for a lifetime? Of course. Do we have to teach it a million different ways? Of course. Do we have to teach it five million different ways if we have a special needs kid? That’s been my experience.
Beyond that wonderful lesson, there is also the understanding that, not only does Mom mean what she says, but she is also on her kid’s side. Thanks to empathy, parent and son are side by side, looking out at the kid’s behavior and learning from it. Oftentimes these experiences bring a new closeness – as opposed to the anger, resentment and mile-wide divide between kid and parent that can result when consequences are delivered differently.

I could go on but I won’t…for now. Suffice it to say that, of all the techniques and interventions we’ve used with Joseph, Love and Logic stands high on the mountaintop as one of the most powerful. If you haven’t looked into it, I suggest you do!

 

 

Yesterday was Father’s Day, and Blue Eyes chose a hike in the Sierra Buttes to celebrate. It had been a long time since we’d been to the Buttes, and we were all quite excited at the prospect. So far so good, right?

We got an early start, drove a ways, parked at the trailhead and started to hike. Then it happened. The dog thing came up…again. The crazy, totally unfounded and irrational terror of dogs reared its ugly head. What did this mean? Well, almost every other party hiking yesterday had a dog with them. The first family that went by had not one but two of the fearsome creatures. Joseph ran off the trail and into the woods as they went by. But in his fear and panic, he also started insulting the dogs (loudly): “Those dogs are mean! They’re nasty!” And here comes the winner: “They should be killed!”

CheckersRepeat variations of this many times over. At one point, Joseph was out in the woods again, and Blue Eyes and I were waiting for him on either side of the trail. Our dog, apparently NOT one of the fearsome creatures, was hanging around happily.

I looked at Blue Eyes and said in a trembling voice, “The pain body! The pain body!”

The author, Eckhart Tolle, started the pain body concept. He says that all our past and present pain accumulates to create a negative energy field that occupies our body and mind. He seems to treat it as an invisible entity in its own right: which, if you think about it, it really is. How many of us do things we wouldn’t normally do when we are in a lot of emotional pain? I know that I almost always regret what I do when my pain body is up.

Tolle’s recommendation is to watch the pain body closely, as there is a lot to learn from it. Also, when you are watching it you are not sucked into it. You are being the witness — that oh-so-powerful way of living life.

So I watched it. And Blue Eyes and I had a good talk about it: His pain body was not up. He was surprised and a bit frustrated, but not angry and sad the way I was. He didn’t want to push Joseph off the cliff at the top (note: I am speaking figuratively here. While the pain body part of me certainly did want to push Joseph off the cliff, the rest of me remembered that I (a) love him, (b) feel sick when I kill even an ant, and (c) don’t want to spend a good portion of my life — even a Joseph-free life — in prison).

Then I added in something new I’ve learned from the Buddhist teacher, Sylvia Boorstein. “Sweetheart,” I said to myself, “you are in pain. Relax. Take a breath. Let’s pay attention to what’s happening. Then we’ll figure out what to do.” I am paraphrasing, but this is roughly what Boorstein says about these lines: “Sweetheart” reminds us to be compassionate to ourselves. “You are in pain” is stepping outside and being the witness. “Relax” suggests to the mind that there is another approach to this situation. “Take a breath” offers a new focus. The rest suggests more witnessing — looking within first and acting second.

It helped. A lot.

After a couple of hours on a steep, dog-filled trail,  something happened: a man we had gotten friendly with stopped ahead of us to talk with someone. His sweet dog, Sammie, wandered down to say  hi. Joseph went into reverse fast, while Blue Eyes and I loved-up Sammie. “Joseph!” we called. “Come pet Sammie. We’ll hold him for you.” Joseph made his way slowly toward us, then gave Sammie some pets from the back. He got more brave as he went, and soon it became apparent that Sammie had also landed in the “not a fearsome creature” category.

We climbed some outrageous stairs to reach the observation tower at the top of the mountain, 8900 feet up. What accomplishments! A long, hard hike, at least one new dog on the friendly list, and a pain body observed.

The way down was much more cheerful. Less dogs, and even the ones we encountered didn’t cause so much drama. Blue Eyes andSierra Buttes I congratulated each other: We hadn’t seem any other special-needs kid on the trail, and we could understand why. With a kid like Joseph, it’s much easier to stay home and do something he wants to do, like screen time or whatever. A large portion of this hike was a pain in the behind. But I remember John, our RDI consultant, telling us we needed to teach Joseph board games so that it wasn’t another thing left out. And so it was with the hike yesterday. Another thing not left out. It was hard. It took determination and embarrassment and tenacity. But we did it.

Afterward, I asked Joseph how the day was for him. “Good!” he said. He was proud of himself. When he looks back on this day, the episodic memory will be one of accomplishment and pride. Us too.

So there we have it. Another thing not left out. Thank God.

 

 

A couple of months ago, I had a one-on-one session with a spiritual teacher. In tears, I told him that I coudn’t relax. My jaw was in a continually-tightening vice that was now causing nasty headaches. My body was clenched and tight, my mind was in fear, I couldn’t sleep, and everything was a stress. He helped me through it — gave me tools to pause, let go of the difficulty, and relax into ease. Everything you need is already here, he said: Abundant love, unending help, incredible wisdom. Just choose it.

This, along with some other practices I’d lately incorporated, has brought about a transformation in my life. I choose ease much more often. I laugh more readily. I don’t have headaches. I sleep. I have so much gratitude for this shift — one that, for many years, I thought would never come.

I doubt that any parent of an autistic child ever forgets the moment they receive the diagnosis. When the psychologist pronounced it to us ten years ago, I bawled. I also future-tripped. The images for the future looked like a boy, teen, young man, etc who stood in a corner and flapped his hands, cooing and moaning. Wearing diapers, never engaging meaningfully, never a friend in the world. What a scary image that was, and how it tortured me through those early years. That was when the stress and terror began.

This blog documents a lot of the harder moments so I won’t go into them here. Suffice it to say that tension and fear became chronic companions in body and mind, and sometimes even in spirit. And this is largely how I’ve been for the past 10 years.

Now Joseph is 12. I’ve gone back to work part-time, and last summer I dragged Joseph into the office with me now and then so that I could get some work done. This year, as summer approached, Joseph told me he wanted to go to day camps: “Anything other than going to the office with you, Mom!”

So Joseph started his summer break this week by attending camp in the mornings at our former church. As we drove toward the church I started past-tripping this time, remembering other events where we’d walk into a room full of strange kids and Joseph would cling desperately to me, refusing to let go, overcome by fear and anxiety.

Not this time. We walked into the room and he said goodbye, asked the camp counselor where he should sit, and sat. I was all the way out to the car when I remembered that I needed to give him some money. I went back in and found him, handing him a $10 bill. “Enjoy your day, Mom. Enjoy your day,” he said with emphasis, meaning “Get out of here, Mom, you are not welcome here.”

Geez. Talk about a shift!

Friends have also been a new thing, dissolving a big chunk of the torturous, future-tripping experience. This year Joseph had a best friend, a second best friend and a third best friend. He is spending every Tuesday this summer at his best friend’s house, and every other Thursday with his second bestie. They are not the friendships I would have but they are definitely friendships, and I am so happy for him. Joseph doesn’t notice that this is a miracle at all; he never thinks to question the fact that he has friends. I mean, why wouldn’t he have friends?

Why indeed. Joseph doesn’t think about his autism at all, as far as I can tell. In fact, he’s told us that he’s done playing sports with the special needs kids; he wants to be on the typical teams. This one is a little tricky for me because he can’t keep up with the typical kids, but then neither is he slow enough to be on the special needs team. We’ve told him that, if he practices and is good enough, we will support him being on the same teams as his friends. In the meantime, we’re encouraging swim team and other sports that don’t require so much dynamic interaction.

My oh my, what a journey. It is good to breathe and let the hard stuff go, because I choose ease. I choose love. I choose to know my connection to the Divine. I choose to step lightly.

It’s dark because you are trying too hard. Lightly, child, lightly. Learn to do everything lightly. Yes, feel lightly even though you’re feeling deeply. Just lightly let things happen and lightly cope with them. I was so preposterously serious in those days…Lightly, lightly — it’s the best advice ever given me…So throw away your baggage and go forward. There are quicksands all about you, sucking at your feet, trying to suck you down into fear and self-pity and despair. That’s why you must walk so lightly. Lightly, my darling. ~ Aldous Huxley

Blessings to all.

 

 

 

 

A couple of nights ago, I had a scary dream. The details are sketchy, but somehow things were closing in on me, squeezing me, smothering me.

I gathered everything I had and yelled, “HELP!!!” Immediately things started shifting, softening and giving me some space.

Then Blue Eyes took me from the dream: “Yoga Mother! It’s okay. You’re dreaming!” I looked at him, wide-eyed. “You heard me yell for help?” He nodded affirmatively, and then he drifted back off to sleep.

As for me, I laid there feeling surprised and grateful. In some far-off post I’ve mentioned that, for many years, I’d dreamt of terribly dangerous situations where I’d be unable to call for help. I might try calling 911 but the phone line would be down. Or I’d try to scream and only a whisper would come out. I could never ask for help, and help never came.

Every now and then, I’d still have a dream like that. But this time — wow! I’d called for help so hard that it was heard and responded to not only in my dream life, but also in my real life! What a lovely shift.

on drumsAs always, the inner reflects the outer and the outer reflects the inner. Life has shifted a lot since I wrote that first post six years ago. Joseph still has autism, of course, but he’s a pretty different kid from the one he used to be. He’s made it to 5th grade in a neurotypical class. He can hold a fairly good conversation and he has good eye contact. He is making his way in this tough old world, and I am so proud of him. He’s still a pain in the butt and probably a lot more work than your typical kid, but we can live with that.

I feel like we’ve worked on everything: Eye contact and leaky gut and nose picking and voice regulating and social skills and fear of dogs and sleep disorders and gluten sensitivity and severe constipation and general anxiety and taking responsibility and appropriate stimming and self-regulation and co-regulation and crowd-tolerance and noise sensitivity and sensory defensiveness. And on and on.

But since, thanks be to God, much progress has been made in all these categories, now we get to work on what the experts say autism is: A processing disorder.

no planetTake, for example, Exhibit A on your right. This is a beautiful picture of a great variety of animals standing around the planet. In the center Joseph has written, “No planet is mine except home.” He showed me this picture with tremendous pride, and I, not wanting to shoot down his confidence, admired it greatly. In private I pondered how to help him to sort out the sentiment in the middle without shaming him in any way.

“Joseph, I love this picture,” I said to him. “I love it so much that I want to buy a big poster board and have you draw it again, painting all the animals. Then I want to hang it on the wall. Would you be willing to do that for me?”

What’s a kid going to say to that? He nodded proudly, and I continued. “What you wrote in the middle, can you tell me more about what that means?” We discussed it, and it meant what I suspected it meant: This planet is home to all of us. Then I kindly explained that it didn’t make sense the way he’d written it, and could he put it the other way on the big painting. No problem; he agreed happily. It was a non-issue, I am happy to say.

When he says, “I’m embarrassed!” Blue Eyes or I will say, “Embarrassed is when you’re ashamed. You don’t seem to be embarrassed. What are you really?” He’s getting better at this now; he’ll respond, “I’m mad (or whatever)!” Helping crossed wires get uncrossed is a pretty hefty undertaking, but I am thrilled to be here.

We couldn’t have arrived even at this place without all the amazing help we’ve had. I know without a doubt that one of my soul lessons was to learn to ask for help and to let myself be helped. I’ve still got a ways to go, but without this journey of autism I wouldn’t be near as far along as I am. So today I give thanks for progress, for challenges, for vulnerability and for help.

The Buddhist outlook toward challenges is to know that karma is so complicated that one can’t possibly understand why the situation is the way it is. And it includes the understanding that, for now, it cannot be otherwise. In other words, it is the way it is. Until it isn’t. Then it’s some other way.

Relaxing into that. Wishing the same for you.

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.

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.

holding handsWatch them, and you’ll see it for yourself: a child or adult, with autism or another disability, holding hands with a parent or other caretaker as they walk together. Sometimes there is a version of this, where the disabled person holds the other’s purse, or elbow — but somewhere, somehow, there is a holding.

I really dislike it when Joseph holds my hand. It was cute when he was small and all the other kids did it, but now it sticks out like a sore thumb. This small gesture may as well be huge words painted up in the sky: DISABLED. This person cannot make it alone, handholding says. S/he needs someone more intelligent, more together, more able, to maneuver them through life. 

So I’ve been encouraging Joseph to let go. He dances on the boundary of independent versus dependent, and I would have him walk beside me, our four hands swinging, happy, confident and alone.

It only works sometimes. Joseph, of course, doesn’t put all that meaning into it. He likes me, likes my support, likes the comfort of holding my hand. It’s as simple as that – to him.

Independence is an issue that seems to have risen up by itself lately — independently, if you will. A few posts ago, I discussed the public bathroom dilemma. That’s been slowly shifting to the point where, some of the time, Joseph will stand outside the bathroom door while I use it, and I will stand outside the bathroom door when he uses it. Yesterday that happened twice with great success! I felt really encouraged.

Until we went to the hair salon where, for some mysterious reason, Joseph got hit with an anxiety storm. When I tried to pee on my own he started screaming – loudly! Imagine it: smallish, cute hair salon in a little house, everyone able to hear the panic-stricken screams. When I, pants down to my ankles, pulled him into the bathroom with me, he hit the mirror, hard, with his fists. Luckily, it didn’t break. He stood there and screamed, over and over again, until I gave up on the idea of calming him down for a haircut and, pulling him through the room and stammering apologies, got him out the door and into the car.

When we got home, I cried. Lots.

IMG_0380Then I texted my girlfriend three little words: “I hate autism.”

There are lots of good things happening, too. An Indian family is renting our guest cottage for a few weeks, and the 10 yo boy and Joseph are becoming friends. They are both musical and they both like to build, so it’s nice to see them hang out. We haven’t seen that a lot and it is a thrill to see it now.

Joseph is the only fourth grader who insists that his mom or dad walk him to his classroom in the mornings. When I walk him, he also usually insists that we — shudder — hold hands. A while ago, I promised him that, if he would walk by himself for a week, he could take his pick of fancy restaurants and we’d take him out to celebrate. He’s obviously been mulling this over, because he announced that he is going to do it, starting this Monday. I wonder if, when push comes to shove, he actually will. Oh, please please please God make it so. Help this soul to step up to the next level, one where he can stand strong within himself.

Attachment is that thing that wakes us up in the night, makes us slaves to our lifestyles, makes us miserable with life as it is. So, even as I long for Joseph to grow more fully into his potential, I caution myself to be detached to the outcome. That part, after all, isn’t under my control. As the Bhagavad Gita says,

Disinterested, pure, skilled, indifferent, untroubled, relinquishing all involvements, devoted to me, he is dear to me. He does not rejoice or hate, grieve or feel desire; relinquishing fortune and misfortune, the man of devotion is dear to me. Impartial to foe and friend, honor and contempt, cold and heat, joy and suffering, he is free from attachment. Neutral to blame and praise, silent, content with his fate, unsheltered, firm in thought, the man of devotion is dear to me. Even more dear to me are devotees who cherish this elixir of sacred duty as I have taught it, intent on me in their faith. 12: 16-20

Recently we made the decision to stop attending church. Every time the pastor said that Jesus was the only one who’d ever died and then resurrected, I wanted to raise my hand and tell him that yogi masters do things like this all the time. When he spoke about Jesus being the only way to the Father, I wanted to tell him that yoga philosophy maintains it’s a consciousness, not one specific man, that leads to the Divine; that Jesus was not speaking of himself as a person but as that greater Self, just like when he said, “Before Abraham was, I am.”

In other words, we got tired of overlooking things, of pretending to be who we were not. We decided to embrace our yogi selves and let go of the Christian church community. I did it as honestly as I could, writing to the pastor and his wife, expressing my gratitude, love and respect for them and yet explaining where we were with it. They were kind, loving and respectful back, but also pretty baffled. And that’s okay.

masters2Since then, Joseph’s been questioning us: What do Blue Eyes and I believe in? Who is God to us? What is our path? Our answers must have satisfied, because he has declared himself to be a yogi. He dove into our photos and put pictures of masters all over the house. You can’t do a thing now without being watched by masterful eyes.

Most of all, though, Joseph’s been pestering, encouraging, and otherwise urging us to join in with our old spiritual community again. This is the literal community, the one that’s about a 40 minute drive away, the yoga community that was Blue Eyes’ and my life for fifteen years. When Joseph was young we’d tried to join in, but at the time he couldn’t abide crowds, and new people, and unpredictability, and music, and we’d had to give that up.

Now I watch him forging friendships with the people in the community. The lady who takes care of the goats, the man who runs the bookstore, the guy who’s joined us at the table when we come for pizza night. There is something in Joseph that touches people — not everyone, naturally, but when that something does touch them, it does so deeply.

I really appreciate that yogis see beyond the form. Pierre Teilhard de Chardin summed it up well when he said, “We are not human beings having a spiritual experience. We are spiritual beings having a human experience.” A yogi might say, “Autism? What an interesting challenge to reincarnate with.”

In other words, Joseph is a soul that took on a body, mind and personality in order to be a part of this divine play. That his mind has a processing disorder is an important part of the role he is here to act out. I haven’t observed anyone at the community talking down to him, or simplifying things for him, or asking me questions that should be directed to him. They don’t seem to define him by his autism, and this pleases me immensely.

body-and-soulAnd so, this dance between autism and spirituality takes on a new rhythm. Kind of feels like coming home; a welcoming, exhaling, ‘it’s okay to relax’ kind of feeling. I don’t know where it will lead but I’m willing to be where we are and to take the next step when it shows up.

My last post had me so sad about Joseph’s lack of connection with our spiritual family. Guess I gave up too soon.

When it comes to Joseph, I’m starting to realize, I should never say never.