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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.

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.

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.

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.

horseback ride halloweenOne of the best pieces of advice I’ve ever gotten from a fellow autism parent was this:

Figure out what you love to do and then be persistent at getting your kid to do it too.

This mom is an avid cross-country skier, and she did not want to give that up just because her son was severely impaired with autism. She spent two years pushing him up snowy hills and holding on to him as he went down the snowy slopes. Eventually he got it, and now the whole family cross-country skis together regularly.

Blue Eyes and I wanted to travel as a family. Travel, of course, requires lots of changes and being out of the routine — both things that autistic people don’t take easily. When Joseph was turning three, we wanted to bring him to New Zealand to visit his nanna and other relatives. I was freaking out about taking a young autistic kid on such a long flight, but our counselor said this:

It won’t get any easier if you wait.

This, too, was good advice. We took him on that flight, and he’s been traveling with us ever since. Hotels were difficult at first — I have vivid memories of packing up and checking out at 3:00 one morning because we knew he’d never get back to sleep — but now hotels are one of the best parts of traveling for him.

Joseph is pushing the limits himself now. He nagged me incessantly to go ice skating recently. When you’re dealing with autism, anything different is good, so off we went.  The rink was great because you could stack up buckets and hold on to them as you skated. It was a perfect first visit, and we’ll go again sometime.

He hopped up on a big horse on Halloween and rode around as bravely as any other kid. A huge step for Joseph.

After six years of trying, after six years of being terrified that he might fall, last week Joseph finally rode his bike all by himself. Oh, he was so proud and happy. He even fell a few times and realized that he didn’t die.

Now, as winter begins to whisper in the wind, Joseph is talking about skiing. Our 23 year-old nephew is visiting from New Zealand, and he is a very enthusiastic skier. Then we have Joseph’s friend DJ who, with his family, is way into skiing – so Joseph’s getting influenced on all sides. The guys went to a ski sale yesterday and bought used ski gear for the whole family. So I guess we’re going skiing.

When Joseph was five, I watched friends put their five year-olds into ski lessons and thought that Joseph would never be able to do that. He’d scream. He’d panic. It’d be too strange, too unusual for him. He didn’t have any sense of balance. He’d fall a lot, and he was panic-stricken about falling.

Amazing what a difference a few years can make, because now he is ready. He put on his skis, poles and boots this afternoon and “skied” on our lawn. “See? I’m good at it already!” he said to me.

Music to my ears.

The Buddha said we make our own prisons, and I believe it. I have put limitations around my kid and his condition; I think he’ll “never” do this or that. Now I’m thinking I’d better remove “never” from my vocabulary.  It’s like this reverse-advice from Richard Bach:

Argue for your limitations, and sure enough they’re yours.

I’ll leave you with one famous piece of advice. It comes from Winston Churchill and is very relevant, not only to parents of special needs kids, but to everybody everywhere:

Never, never, never give up.

Blessings.

We’re not necessarily doubting that God will do the best for us; we are wondering how painful the best will turn out to be.
~ CS Lewis

Painful is how I would describe life as an autism family. I hit bottom around the pain (again) just over a week ago. Joseph is nine now, and the sweet, cheerful little boy has been taken over by a rebellious, yelling, smart-ass, sometimes hitting kid who is almost as tall as I am.

Forget the blues: I had the blacks. I felt swallowed up by a deep, dark hole of despair. Bruce Springsteen sang in my head: “Had a wife and kids in Baltimore, Jack. I went out for a ride and I never went back.”

That’s what I wanted to do. Sometimes I wanted to take my husband with me and sometimes I didn’t, but I definitely wanted to ditch the kid. Hop in the car, drive away and never come back. Such a sense of freedom, of liberation, that thought gave me.

Well, on Thursday I did hop in the car and drive away, but it wasn’t quite that dramatic. I was only gone four hours and my friend, Terese, did the driving. It was where we went and what we did that made the all the difference.

We went to session one of a five-week Love and Logic course.

In this classroom, other parents were struggling. Not only parents with autistic kids, of course, but all the parents. Two of the kids were getting emergency crisis intervention. One girl had just called her mom a fat pig who didn’t know anything. Another was getting cyber-bullied. I heard stories that made my curly hair straighten.

Then — ah, then! — we were given tools. It takes two to engage in an argument, we were reminded. If you’re playing tug of war with your kids and you let go of the rope, the game is over. We were taught how not to engage in shouting matches, in power struggles, in efforts to control. And to do our part with love and empathy.

We were reminded — and this one was huge for me — that the reason we decided to have kids was because it would be fun. Raising a family is meant to be fun. AND kids need to make contributions, just like Mom and Dad do. Though Love and Logic doesn’t often use the the word responsibility, it includes everyone doing their part.

On Friday, Joseph and I were talking about lifeguards. Joseph is very interested in lifeguards and the rules around pools. He asks questions like, What would happen if I ran at a water park? What if I was rough with a little kid at a public pool? I was answering logically, saying that the lifeguard would get him in trouble. If he was really naughty, I told him, he’d probably have to leave the place.

Well, this got Joseph anxious and he started to yell. Loudly. And rudely: “STOP TALKING ABOUT LIFEGUARDS! I DON’T WANT TO HEAR ANY MORE ABOUT LIFEGUARDS!”

The old Yoga Mother would try to calm him down. Or maybe even yell back at him. The Love and Logic mother, though, immediately and intentionally went brain-dead. This brain-dead moment stops me from reacting, gives me a second to reclaim my center.

Then I didn’t say anything. I could have used one of the many brilliant Love and Logic one-liners (“How sad.” “Don’t worry about it now.” “I love you too much to argue.”), but it’s much more natural for me, with my yoga background, to exhale loudly. Not sarcastically, not meanly –just a loud sigh.

And that was it. With my sigh I let go of the rope, and the conversation was over.

Replay scenes like that a dozen times a day, and you’ll get a sense of how Love and Logic is impacting our lives.

I’m realizing that I’ve been too flimsy around the boundaries, not modeling the calm, centered person I want him to become. Acting more like a drill sergeant (“Clean this up! Now!”) than a consultant (If it was me, I’d do it this way — but it’s your choice.).

What I know for sure is that it hasn’t been much fun. And now it is again. The autism is still there, but I’m realizing that we can have fun anyway. Saturday eve we went to a waterpark — what a blast! Yesterday we went on a hike with friends, and Joseph copied his younger friend by crossing funky, shaky bridges over the creek without fear. A new milestone for my usually timid young man.

IMG_2745Bottom line? I believe God wants us to have fun. It adds such a richness to life, and then we get to share that joy with others. So what the hell, let’s have fun — and, if we’re not, let’s figure out why and make the changes needed.

It’s funny, in a way. If we hadn’t lost our RDI Consultant, I don’t think I’d have taken this Love and Logic course. John was such a strong support for me that I would have struggled gallantly on. But with him gone, I’m having to fill in the gaps — and it’s turning out to be really good for me, for us.

Even lower bottom line? Even though, as CS Lewis said, God’s best is painful, it’s important to remember that it’s also the best.

in sandFor many years, Blue Eyes and I have wondered when the right time to have the autism talk would come. The word autism has been said in Joseph’s presence hundreds of times, and yet he has never seemed to pick up on it or ask what it is.

We asked our RDI Consultant,”When should we have the autism talk?” His answer was, “When it would be helpful.”

So through the years we’ve checked in with each other to see if it would be helpful. The answer has always been no, so we’ve let it ride. Lately it became not so much a when, but an if. Maybe Joseph would never need to know his label! Maybe he would never ask.

I mean, he participates in sports with special kids. He goes to a summer program with special kids. He is the only one in his class with an aide. If he wanted to figure out that he was a special kid, it wouldn’t be hard.

My expectation of the autism talk, if it ever happened, was that Joseph would come to Blue Eyes and/or me, sit down with us and ask why he was different. We’d talk about autism and how it makes your mind think a little differently than other kids. He would ask his questions, we would discuss it all together, and the subject would be an active, dynamic one for the rest of our lives.

But that’s not the way it happened.

Two days ago, Joseph and I were getting Bowen treatments. Our Bowen (alternative healthcare) practitioner treats special needs kids for free, bless his heart, so Joseph and I were lying side-by-side in a treatment room. The way Bowen works is that the therapist makes several small adjustments and then leaves the room for a while — repeated many times over an hour or so. So Joseph and I are lying there, feeling very relaxed, and Joseph is chatting away quietly.

He gets on one of his favorite subjects: the kids who were in his summer program. He lists the ones who have Downs Syndrome. Then he asks, “Mark doesn’t have Downs Syndrome, does he?”

We’ve discussed this before, and I give him the same answer as before: “No, Mark has something called autism. You can have  a lot of autism or a little autism, and Mark has a fair bit of autism. That’s why he doesn’t talk.”

There is a short, restful silence.

Then Joseph says, “I have a little bit of autism.”

Whoa! I didn’t see that one coming. For a minute, the world stops. He knows? He knows? Wow — he knows!

After a moment I say, “Yes, you do. That’s why you’re so creative, and why you love your music so much.” Then I say, “How did you figure that out?”

Joseph changes the subject, going on to something else. I follow his lead and join in.

That’s it. That was our autism talk.

So far, at least.

Whew! That was a lot of years coming.

We’re not going to bring it up again until Joseph does, but there is a comfort in having it out there, in knowing that he knows.  It’s been an unmentioned elephant in the room, so it’s nice to have spoken it out.

From all appearances, it is not a big deal to Joseph at present. It’s just part of who he is.

And so it is. Part of the bright, funny, creative, frustrating, incredibly annoying, loving, amazing person he is.

Joseph burst through the door yesterday, excitement on his face.

“You won’t believe what we saw!” he exclaimed.

“What did you see?” I asked.

“I saw — we saw — we — I — we saw a, um, a squirrel. No! Um, we saw a little chimpanzee!”

He’s been watching the movie Summer of the Monkeys, so I figured he was borrowing some of their script and trying to adapt it, more or less, to his life. It was very cute, and it was fun to see him so expressive, stammering around with personal pronouns and using his imagination. In the movie, the main character is a boy who spends quite a bit of time out in nature by himself. Suddenly Joseph is feeling better — and braver — about being alone out on our land. Nice!

The first month of this summer was hectic. Joseph was in a special program for high-functioning kids who might regress if they didn’t have extra schooling, so he was up early every day, catching the short yellow bus at 7:30am and getting delivered back after lunch.

He picked up some really bad habits at that program. Summer school recesses had him interacting, not just with his class, but with kids like the non-verbal ten year-old who still wears a diaper and makes odd sounds. Joseph will screw up his face to look just like this kid and then mimic the sounds — perfectly, I’m sure. Which would be okay in private, but he’ll also happily do it in public. So we’re down at the hotel breakfast room on our vacation and he breaks into a loud rendition of “Unnhhh, ughhhh, ughhhhhhhhhh!”with a screwed-up face. Naturally, other people take notice and try not to stare at the severely-impaired kid. But they do anyway.

Sigh. Perhaps this was the last year for Joseph to do the summer program.

Joseph does pretty well academically, but math has been difficult. A friend referred me to a program called Addition in Minutes, which we’ve been spending 20-30 minutes on daily. Joseph is finally learning his math facts (e.g., memorizing), and I am experiencing the lure of homeschooling. To get how my kid learns, to tailor things to that. To take our time when we need to, to hurry past when it’s easy. To sit down and study as it fits into our rhythm. It has many good pieces.

Before Joseph even started school, I looked seriously into homeschooling. An Education Specialist talked me out of it, though. She maintained that Joseph needed as much social practice as he could get, so public school would be the way to go.

I trust Joseph. If he is feeling good and confident at school, we’ll continue there. If and when things go asunder, it’ll be time to have another look at homeschooling. Meanwhile, I’m much enjoying our math time together. It brings us closer.

RDI puts a lot of emphasis on apprenticeship. Most kiddos naturally understand that Mom and Dad are guides and teachers, and they are (generally) happy and eager to learn. Not necessarily so with kids on the spectrum, so we actually work on helping our kids become apprentices. I’ve noticed a nice shift in Joseph this summer, where he is more willing to listen to me and learn from me. Simple things, like how much 3/4 is on a measuring cup, or harder things, like how to fix the wheel on the ottoman.

chickenJoseph is really eager to have a farm. We are going to start (and possibly end) with half a dozen chickens, which will be another great way to work on apprenticeship. This Saturday we’re going to visit a couple of friends who already have chickens, and, as adults, model what it is to be in apprentice mode ourselves. We’ll build the chicken coop as a family, and, when the chooks arrive, Joseph will play a big part in their feeding and care. I’m feeling pretty excited about the opportunities this endeavor will create!

So all in all, a good summer. As they say in RDI, good enough. Not perfect, but good enough. I am content with that.

Have you noticed that it’s easy to trust when everything’s going well? That’s when you feel there is a loving God. That’s when you know the Universe is on your side, and you are in the “zone.” Then — LOOK OUT! — a wrench gets thrown in the works. And suddenly God is not so loving, the Universe is out to get you, and that zone is some far-off place that has no relation to you.

Welcome to my week.

Blue Eyes and I have been quietly celebrating a thinning fog in Joseph’s brain. No one other than his mother(!) has ever called him smart before, but in the space of a few days one of his teachers told me he was intelligent, and another said he was obviously smart. This is, I believe, a direct result of that thinning fog. Joseph is thinking more clearly, speaking more lucidly, and understanding more quickly. So yeah, that loving God was showering his favor on us.

Then came not one, but two, wrenches.

First was our beloved RDI Consultant. He has a disability that he has courageously battled since he was a child. He called the day before our consultation to tell us the disability was looming large in his life and that he needed to go for some major surgery. Said that this may be the end of his role as a Consultant.

If you haven’t had someone come in and make a huge difference in your autistic child’s development, you may not get the impact this had on me. First I cried. Then I prayed — hard — for trust.

Oy. Trust. My whole life I’ve had a hard time trusting God. Trusting that there is some grand plan in execution beyond my limited vision. So I cried and I prayed and I cried and I prayed.

A few days later, I heard Joseph in his room at 4am, crying. When I asked him what was wrong, he said his left leg was killing him. Blue Eyes woke too, and together we massaged his leg, gave him pain killers, applied heat, and tried whatever else we could think of to help ease the pain.

Joseph was in agony. He couldn’t get off of his bunk bed, so Blue Eyes had to carry him down, Joseph screaming with pain. We had a trip to the doctor’s, a trip to the hospital for x-rays, and a later trip to the hospital for an ultrasound that evening. In between visits Joseph (and I) cried about this mysterious, vindictive pain.

I had to drive directly from the evening visit to the hospital to meet someone for a work consultation. My head was NOT in the right space to meet with this man, and I didn’t do my best work. So I’m driving home, completely exhausted, and — guess what? — praying, once again, for trust.

That’s when God spoke to me. This, s/he said, is how one builds trust. Facing frightening challenges and actively trusting again and again. Day by day, or moment by moment.

Then the radio started playing  a song:

Strength will rise as I wait upon the Lord. Wait upon the Lord, I will wait upon the Lord.

Whatever caused Joseph’s pain, it has cleared up now. The tests found nothing. The doctor is guessing a twisted muscle.

Whatever else it was, it was also a  great gift for me. In the hospital waiting room that morning, I felt an overwhelming urge to let all my girlfriends know what we were facing. So I texted them. They responded with moral support, practical help, and many prayers. I thought back to seven years ago, when we got the autism diagnosis and I told almost no one. I was not ready to ask for, and receive, that much help. I was not ready to be so vulnerable.

love GodKahlil Gibran says that, even as love is for our growth, so it is for our pruning. The journey of autism has pruned me — cutting off everything that was not essential so that newness could grow and flourish. Now I can say, help me! I can lean on others when I am not strong.

And a loving God, a Universe that is on my side, and a zone that is readily accessed with an open heart are all reminding me that I can relax. All is happening as it’s meant to happen. I don’t know what that is, but for my part, I can trust.

More and more, I can trust.

When Joseph got his autism diagnosis at the age of two, they might as well have diagnosed me with anxiety at the same time. Anxiety has become such a habit for me that I now have what I call an anxiety slot. It seems that this anxiety slot needs to always have something in it, so if Joseph’s situation isn’t making me anxious, my mind easily puts something else in the slot.

But the spiritual path is a path of increasing awareness. The call is to look intently into the mirror of one’s consciousness and not shy away from the blemishes. So, yes, I have developed the habit of anxiety. And now it seems like the time to work on it. I can see my new yoga series: Yoga for Anxiety. It’d be a big hit, don’t you think?

That  being said, we are experiencing some wonderful breakthroughs with Joseph! Blue Eyes took him to New Zealand (Blue Eyes’ native land) for two weeks in October, and I stayed home. Joseph came back with a deeper bond with his father,  a new openness for adventure, and an appreciation for his extended family.

374567_10151146801606586_881625458_nThis was great, coming on the heels of Thanksgiving, where we recently gathered at my brother’s house with about thirty of his American relatives. Joseph was excited to go — amazing in itself, given that he’s dreaded past gatherings. And he had fun!

Joseph needed the constant scaffolding of being with Blue Eyes or me, but our RDI Consultant assures us that many of his kids would be happy wandering about in their own world, not needing anyone. So this was a good thing. Joseph’s need for us included emotional comfort and perspective-borrowing —  a wonderful thing for a child with autism to look for from people!

It was interesting to look at the impact Joseph makes on my larger family. He reaches into people’s hearts and,  simply by his very being, he helps them to open. He’s been doing that to me for years. There’s something so special about connecting with an autistic child.

Blue Eyes and JosephBack on the home front, Joseph’s figured out a way to tease Blue Eyes so that he gets chased all over the house. Once he is caught, he is tickled. This can go on for hours. Joseph can’t wait for Blue Eyes to get home in the evenings so that they can play this game. In the past, Blue Eyes has been pretty much ignored, and now Blue Eyes says it’s actually fun to come home from work.

The happiness in our house is palatable. Wow.

Connections have been happening, more than ever. I love shared things! Shared smiles. Shared emotions. Shared conversations. Shared snuggles. Precious, precious times.

I have been wondering what the flip side of anxiety is. Contentment? Faith? Trust? Surrender?

For me, in this journey with Joseph, it seems to be hope. I used to hope for recovery, and then I shut down around that and stopped hoping pretty much altogether.

Now I want to cultivate hope again. I hope for continued intimacy, continued growth, and continued breakthroughs.

It’s been said that many of the great achievements of the world were accomplished by tired, discouraged — and, may I add, anxious — people who kept on working. That is a really good adage for us autism parents.

The thing about hope is that it’s a risk. To hope is to risk pain. But to live a life fully open and fully lived, we must risk. We must hope. We must continue on.

And every now and then we get some sweet, blessed, blessed encouragement. Yea.

Wishing you strength, courage, and hope on your journey.

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

Then he made his prediction about Blue Eyes.

He said that some scheming bitch would get him.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Joseph got sick this past week: cough, fever, ear infections — the works. It started on Christmas evening, shortly after we’d gotten to a friend’s house for dinner. Joseph had a major meltdown, claiming he was sick and needing to go home.

Devoted mother that I am, I didn’t believe him. I thought, This kid has autism; he doesn’t like unfamiliar situations; he is just making excuses to get away. We sat for a long time in the sewing room, Joseph crying and pleading, me trying to get him out of his unhappy mood.

Eventually Blue Eyes came in and ended the stand-off, pointing out to me that, sick or not, Joseph was not in the space to be at a gathering. The family kindly packed us Christmas dinner to go, and home we went. Sigh. Merry Christmas.

We all regress somewhat when we’re sick, don’t you think? It sure happens in my family: Blue Eyes crawls into bed and doesn’t come out until he’s well, and I get mopey and weepy.

Joseph’s form of regression is different: he  retreats into more autistic behavior. We’ve seen this time and time again so it’s not frightening, but neither is it any fun. I’d forgotten what it was like to ask him questions multiple times, or to call his name, and not have him respond in any way. I’m so glad that phase is over in our non-sick lives.

Long before Joseph’s time, when my niece was 18 months old, she taught me to play the chase game. I imagine there is a variation of this game in every culture; in our case Madison would look invitingly at me over her shoulder and then start to run. When I took up the chase, chanting, “I’m gonna get you!” she’d run faster, almost falling over from giggling. I’d catch her and tickle her, and then we’d do it all over again. And again. And again.

I expected to have the same fun with Joseph but, alas, it didn’t happen. That laughing invitation, that teasing “come join me” look, is not exactly an autism staple. The autism attitude is more like, “Leave me alone; who needs you?” Autism touches every aspect of a person’s life, including play interaction.

Still, Joseph has, slowly but surely, started to understand the chase game. About six months ago he started chasing me in earnest (well, earnest fun), up the stairs, down the stairs, outside, inside, laughing all the way. He wasn’t so good about being chased, however: When I’d try, he’d run a short ways and then, no longer interested, stop. Game over.

We are enjoying amazingly warm, sunny weather for wintertime. After a week of sickness and regression, Joseph was finally well enough to get outside and enjoy it. We celebrated by going on one of our favorite hikes, through oaks and madrones, with river views and a waterfall as the final destination.

Joseph began the hike by saying, “Mom, chase me!” and running off ahead. Then he called, “Dad, you chase me, too. Both of you — chase me!” Blue Eyes took off after him, and for the first time Joseph ran from him, far and fast.  Then he called to us again. This time I caught up and tagged him. Without any clarification from me, he took off after me, running until I was tagged.

Oh joy. Parents, if this is something you take for granted around your child, please don’t. It’s someone wanting you to play with them and being able to communicate that fact, even persistently enough to bug you for it. It’s your child knowing how nice it is to share an experience rather than to go it alone. It’s someone understanding a pattern: run, get tagged, chase, tag.  In other words, it’s good stuff. Important stuff.

Ever since conquering the monkey bars we’ve been on an upswing. Oh, we’re still dealing with public screaming and various other autism unpleasantries, but in general the trend is our friend. Lots of good firsts happening.

Blaise Pascal said:

“Somewhere, something incredible is waiting to be known.”

This sums up how I’m feeling about this new phase. There are a bunch of little miracles happening, step by step. When I see  the laughing invitation in Joseph’s eyes, the reaching out for the company of his parents and friends, the willingness to stick with interactions and play more fully — oh! I feel that incredible something there, just waiting to be known.

What is that something? I think — no, I know — it’s more of Joseph. More of who he really is, when the autism isn’t in the way. More and more Joseph is emerging, unhindered. That, my friends, is my something incredible, and I will take it over anything else this old world has to offer.

I’ll wager a guess that parents of typical children look forward to school Christmas concerts. Not us. Blue Eyes and I have been dreading this year’s concert ever since last year’s took place. We called our RDI Consultant, John, to talk about it:

YM: We’re worried about Joseph’s school concert. Last year, Joseph stood on stage and flapped his hands like a wild man. The other kids sang and did motions to the songs, and Joseph flapped. He never sang, not even once. He looked soooo autistic.

John: He IS autistic.

YM: I know, I know…

John: Tell me more about the flapping. Was he nervous up on stage?

YM: Not at all. He knew we didn’t want him to flap. He looked us in the eye, grinned a wicked grin, and started flapping.

John: Ah! So he was doing it to bother you guys. Sounds like a typical kid to me.

YM: We’re thinking to let him do the dress rehearsal and call it done. What do you think?

John: I say, don’t leave out this experience for Joseph just because you and Blue Eyes will be uncomfortable. Experiences like this are really valuable for him. If you guys can live with the discomfort, I think he should do it.

*****

Sigh. Sometimes you have to use the psychic Samurai sword to slash away your own wishes and do something for your kid’s growth.

We spoke to Joseph’s teacher about our concerns, and she got the whole music team on board to brainstorm. They ended up putting an egg shaker in his hand. At the concert on Tuesday night Joseph was busy keeping the beat, and sometimes he even sang. No flapping; not even one little wriggle of the hand.

Have you ever noticed that, if you’re willing to be uncomfortable, you will often be excused from the actual dreaded experience?

The concert was therefore, in our eyes, a huge success. And that wasn’t the only high note of the week.

Joseph has a crush on a girl in his class named Fiona. He sure knows how to pick ’em — she is a cutie. On Monday Fiona came over for her first playdate.

When Joseph was maybe four years old and I was trying to interact with him, we’d play this game where he’d run into his room and slam the door shut. I’d bang on the door, protesting, and he’d laugh like crazy.

This was called “interaction” at that phase of his development. The trouble was, when potential friends came to play, Joseph would do the same thing to them, expecting them to come bang on the door. But, of course, no one ever knew they were supposed to do that. And Joseph wondered why they didn’t. It was puzzling on all sides.

I resigned myself a while ago to the fact that I might always be a part of Joseph’s playdates, because he may not be capable of coming up with things to do with a friend, or of even remembering to include the person in his activities.

It was different with Fiona. They ran down to the play structure and, well, played. After a while they came back for snack. Then they went into the hot tub and played some more. When it was time for Fiona to leave, she was sad. She’d had such a good time.

Playdate #2 took place on Wednesday and consisted of John’s two boys. John was blown away at how Joseph took the initiative, suggesting they kick a ball around together and then play some musical instruments. They went to a store together and Joseph clowned around trying to climb into a mini-refrigerator, to the amusement of some customers. John was overwhelmingly enthusiastic about Joseph’s progress.

Playdate #3 happened yesterday. Joseph got invited to Carl’s house. When I picked him up afterward Carl said, “It’s about time my best friend came over to play.”

Best friend??? Be still, my beating heart.

John has recently graduated a girl from the RDI program, pronouncing her recovered. She has friends seeking out her company. She is understanding subtle social nuances. This is a huge deal. Our regional agency, the one that funds interventions, told John that they’ve never had one of their kids come so far. They want to make this girl their poster child for what intervention can do.

I try not to fan it, but having had a week like this one, and hearing John’s enthusiasm for Joseph’s part in the play date, and knowing that it’s possible because it happened to someone else, the quiet flame in my heart that whispers, “Maybe Joseph could recover” is burning a little more brightly just now.

Sometimes I get a glimpse of what Joseph would be like fully recovered. He’s such a neat kid with autism that I can only imagine how amazing he’d be without it. With the ability to process more easily, to communicate more fully, to interact more deeply.

Trying to breathe and be present. To be okay no matter what. And, really, I am. But that doesn’t mean I don’t hope. Because I do.

Most of the time I’m not even aware of the quiet, hopeful flame in my heart anymore. But it burns steadily on, through rough times and regular times and amazing times, and I appreciate that.

May the flame in your heart, whatever it burns for, rise up and warm you during this holiday season.

Blessings.

He’d been watching them closely, like he watched most people. Standing just beyond the quickly-flowing current, he’d observed the kids on the play structure. Climbing up ladders, sailing down slides, zipping across the shaky bridge, gliding down the pole. Finishing on one side and running around to the other to do it all again.

Mostly he watched the kids on the monkey bars. Day after day they’d climb the steps, grab ahold of the first one and then, bar by bar, swing their way easily to the other side. ‘Most every kid who tried was able to do it – and anyone who couldn’t simply dropped to the ground and ran to the other end to start over again.

He watched them all.

He had the idea to go down on a Saturday, when none of the other kids would be there. It was true: when they got there, it was just him, Mom and Dad. Well, over on the grass there was a man playing fetch with his dog, but that was far away.

He climbed the steps. He looked at the bars. They were high up, and there were a lot of them. He remembered the ease with which the other kids played on them. In his mind’s eye he saw the ones who’d gone across yesterday, at recess: Leah, Anthony, Jacob, Casey…

They were made of metal. The silvery steel reflected the sunlight. The birds chirped over by the trees, and the breeze blew softly on his skin. Above him the clouds floated across the sky. His parents stood a distance away, speaking quietly to each other.

Ever so slowly, he reached his arms upward. His hands opened, a new butterfly trying out its wings, and wrapped themselves tentatively around the first bar.

*          *          *

I wrote the above essay when Joseph started kindergarten two years ago. The intensity with which Joseph watched the kids on the monkey bars, and the need to try it only when he felt completely safe, really struck me.

For two years now, Joseph’s had a challenging relationship with the monkey bars. That first day he simply put his hands on the bar, but, slowly, he’s gone a little further. For about a year he’d put both hands on a bar and call it done. Then he began holding the bar, stepping off the ladder, hanging for a bit and dropping down. He continued to do this while kids years younger than him swung across with ease.

Here are two things I so admire about Joseph: he never gave up and he never got down on himself. If I’d been in his position, it would be a foregone conclusion that, if so many peers and kids younger than me could do it and I couldn’t, there must be something wrong with me. When I was in Girl Scouts we learned to sew, and there was one knot I just couldn’t grasp. In the Girl Scout handbook it said, Note: Handicapped children may not be able to learn this knot. Therefore, I was secretly convinced that I was handicapped. It took me years to get over that one.

Not my Joseph. Butterflies don’t get weighed down by much.

Yesterday the butterfly flew. He made it across those monkey bars, and back, and across and back, and across and back, a hundred times.

It seemed like he’d always been able to do it. And just as it wasn’t a big deal to him when he couldn’t do the monkey bars, it is also not a big deal that now he can. It’s fun and it’s great, and he called Blue Eyes to announce the fact, but it doesn’t define him as a person.

Wow. What a lesson for people like me. I mean, butterflies don’t think they’re worms because they haven’t yet flown. They stay present. They enjoy the breeze flowing by; they practice moving their wings. When the time is right, and only when the time is right, they lift off.

To every thing there is a season, and a time to every purpose under heaven.

Almost makes you trust, doesn’t it? 😉

It’s called a spectrum because it is just that — a spectrum of autism, which presents differently for each child.

One way Joseph presents is with very little interest in very many things. It’s hard to engage with him in an activity, simply because he doesn’t care about it. It’s challenging, not just for Blue Eyes and me, but also for Joseph’s teachers, peers, respite workers, and RDI consultant.

When Joseph started first grade this year, we worried about recess. Whatever would Joseph do out there on the blacktop if he doesn’t care to play ball or play chase or engage in the myriad of other games that kids so easily play?

But behold, a miracle hath taken place on the blacktop. A couple of weeks ago, Joseph got in line to throw a ball at the basketball hoop. The next day, he secured a basketball and started throwing one at his own hoop. Then he shared the ball with another kid and they took turns doing it.

Joseph came home talking about basketball. A few days later, Blue  Eyes and Joseph came home with a basketball hoop, and they spent hours assembling it. Together. It was the first time Blue Eyes had ever seen Joseph stay attentive to a task for such a long time — and perhaps it’s the first time it ever happened.

Joseph allowed Blue Eyes to show him how to do things, like turn screws, and then he did it himself. This is a very basic skill: being an apprentice to someone. Blue Eyes has mourned that he and Joseph haven’t had this relationship.

When the thing was standing upright — oh my, that’s when the fun began. All of a sudden we had something enjoyable that we could do with him. Joseph said, “I want to play basketball. C’mon, Dad! C’mon, Mom!” And away we went.

So very many other things have been about dragging a reluctant kid into an activity: board games, kicking a ball around, playing catch, shooting water guns, going for walks, listening to music, watching a movie, going on adventures…Shall I continue, or have I made my point?

Yesterday I met with John from RDI, and spoke to him about the new development. He handed me the ball and showed me many ways that I can utilize RDI interventions as Joseph and I play. If I want to pass the ball to Joseph, for example, I don’t throw it to him right where he is. I look to another point and gesture there with the ball. Joseph needs to read my facial expressions and gestures to know where to go. It’s brilliant.

As it turns out, there is a basketball team for special needs kids locally. Joseph works hard all day with typically-functioning kids, and I think it’d be great for him to be with his tribe on a regular basis. It ranges from almost typical kids to severely impaired, and the kids are all very kind with each other. Come the new year, we’ll be there.

It’s a small thing, playing basketball, but it’s a giant leap for our family. When you deal with autism, a little thing like this can go a long, long way.

I’ve been blessed lately with deep, still meditations. Consistently quite blissful. As grateful and delighted as I am, I’m wondering this: After years of battling a crazy, restless mind, why now?

I think it has to do with sleeping pills.

I won’t bore you with Joseph’s sleep travails, as they were covered in an earlier post. Suffice it to say that he, and therefore I, didn’t sleep for four long years. Joseph’s gut began healing and he finally started sleeping through the night. Not so for me. The sleep trauma had settled deeply within my psyche, and I couldn’t get more than a few hours of sleep every night.  I was a wreck. A mess. A walking zombie.

Ambien saved me from the brink of insanity. I didn’t like it but I figured it was a necessary and temporary evil.

Temporary is the word in question. I tried for over three years to get off Ambien. Recently I  settled on not being so hard on myself for being addicted to it, and simply took a low dosage every night.

But two weeks ago I got dizzy. I couldn’t go up the stairs standing up — had to sit on my bum and inch up, step by step. That’s how dizzy I was. My research found that dizziness can be linked to Ambien.

That’s all I needed — something that made me so miserable I could finally quit Ambien. My chiropractor gave me some herbal stuff and told me to expect to have a rough 5 days or so. I did but I gritted my teeth, surrendered it to God over and over again, and made it through.

The dizziness disappeared, but the biggest and best surprise of being off Ambien is that my meditations have shifted to a quiet, joy-filled place. I believe that Ambien really messed with my mind — and, now that I’m off it,  my meditations are giving me some beautiful insights.

I see that I’m living in two dimensions of reality. In one dimension is the temporary reality where I  play mother to the difficult situation of raising an autistic kid. In the other dimension is the ultimate reality, where my soul is being gracefully shaped and sculpted by the situations I have called forth in my life.

When I greet Joseph in the morning with a chunk of sweet spiritual practice under my belt, everything seems as usual — but it’s not. Something lingers. A knowing, an understanding that the situation is just as it’s meant to be. A sense of the grace surrounding the whole thing. Gratitude from my heart to God.

I was in this space when we had a Special Needs Moment at the river today. Joseph had decided he was going to do his first jump off a rock into the water — a big thing for him — and so we swam over to the popular jump-off place. We waited in line and, when it was his turn, he put his foot in the wrong place, slipped, and fell hard on his butt. I managed to pull him up just before he slid into the water. Oh my — how he cried. He was in everyone’s way but wouldn’t move; he just needed to cry, sob, and moan.

My typical modis operandi here would be incredible embarrassment and the removal of Joseph from the scene as soon as possible. But the centeredness within me made me react differently. I realized that Joseph wasn’t just my project. Since God had arranged for all these people to witness the melting-down process, they must be a part of it. I apologized for holding people up and when a  person answered quietly, “It’s ok,” I looked at her full in the face and smiled.

Somehow my comfort made others comfortable because, when I’d moved Joseph away to recover, a girl swam over. She said, “Now that he knows where to step he should try again.” Joseph was up for the idea, so back in line we went. When it was almost his turn, a girl standing on the jump-off place guided his foot to where it should go and helped him to get there. Then she coached him into jumping.

When Joseph surfaced from his jump, the whole crowd applauded. It was a happy moment.

Yogananda used to say, “Without God nothing is fun, but with God everything is fun.” Perhaps the gift of deeper, connected meditation is allowing Joseph and me to enjoy life more. Perhaps also it’s removing some of the sense of isolation I’ve experienced for so long.

All I can say is, never underestimate the power of spiritual practice.

Especially once you’re off Ambien.

I am in awe of two things today: the power of gratitude and the power of attitude.

Since my last post, I have made a real effort to stop “should-ing” on my son and, instead, open to the beauty that’s already there. It’s a mystical, magical thing that, when we shift, the world shifts with us. I got to see that this past week.

We went on a little vacation to the beach. My old-time readers know what our last beach vacation was like in Maui, as we dealt with a child who was terrified of the ocean, who flapped his hands constantly and sang loudly on the beach, and who, while other kids ran and swam and built sand castles, simply couldn’t figure out what there was to do on a beach and  just wanted to go home.

I bring this up because RDI, the behavioral intervention we use, teaches us to look for benchmarks — things we’ve done before that allow us to measure the changes, if any, that have taken place in our kids. Going to the beach again provided a great benchmark.

This is what I saw: when we got to the beach, Joseph had a plan: put on a bathing suit and get in the water. Even though the weather and the water were both cold (this is Northern California, not Maui!), Joseph was bound and determined to get in there and swim. This time there was zero, zilch, fear about the rather rough surf. Even the cold water – something he’s quite sensitive to – couldn’t stop him.

This took up a huge chunk of time, and then he was cold. We wrapped him up in a towel and he sat in front of me while I held him close, warming him up.

After this Joseph decided it was draw-in-the-sand time. Joseph is quite the artist, and he drew many scenes of underwater life, as well as more silly scenes of himself as a robot — calling Blue Eyes and me over several times to marvel in what he’d drawn, or to join in the humor. I don’t think the parent of an autistic child ever takes things like this for granted. His imagination, his humor, and the fact that he wanted us to share the experiences with him, are all things we’ve had to fight for, things we’ve marked and celebrated every step of the way.

We’ve been on the coast now for several days, and each day has only gotten better. Today we went out on a kayak. Joseph, who  screamed constantly during Disneyland’s mild Storybook boat ride, was nervous beforehand. But he courageously got on the boat and ended up having a great time. I am so proud of him.

Just now, when Joseph kissed me goodnight, I told him I love him. He looked me in the eye, smiled, and said, “I love you, too.” He started up the stairs and stopped — feeling, I believe, my love and gratitude for him. Again he looked me in the eye and held the gaze. I said, “You’re the best,” and he replied, “Me, too.” (Kids with ASD sometimes get their pronouns mixed up, but never mind — the intent was behind it!)

I’m feeling connected — with him, with Blue Eyes, with God. Feeling grateful for the gifts of the moment. Knowing that nothing stays the same and there will be difficult times in the future, but appreciating how far we’ve come and how fortunate we are right now.

The Universe is always and only ready. When we turn to gratitude, the world shifts to give us more to be grateful for. It’s the power of living from the inside out rather than from the outside in — which is the essence of Yoga.

The benchmarks have shown some remarkable improvement for Joseph. I am celebrating that. But that is not all I am celebrating.

My attitude has been piss-poor lately, and my shift this week provides a valuable benchmark for me. Changing my attitude has brought cause for gratitude. At the risk of sounding repetitive, I must say that I am ever so grateful.

Wishing the same for me…uh, that is — you. 🙂