Teachings in the Darkness

I have a friend, Brooke, whose sister had cancer. The cancer spread steadily until it had filled her entire body. The pain was terrible to witness. For hours, sometimes, she would scream with the agony of it.

Finally one day, when Brooke couldn’t stand to watch the struggle any longer, she asked her sister, “Why don’t you just die?“

Her sister looked at her and responded with a remarkable question. She asked, “How do you die?”

You see, she’d tried. She’d surrendered. She’d let go as best she could. She’d tried to leave her body. She’d prayed to be released. But she didn’t know how to die.

I can relate.

Not about the dying part, but about the truly surrendering and letting go part.

Sleep is, after all, like a little death. And, since the day we got Joseph’s diagnosis, sleep has been difficult for me.

It’s anxiety. When you have a child with ASD, anxiety gnaws at you with the consistency of a rat who has discovered a rotting corpse all to itself.

If you’ve practiced prayer and meditation or other techniques for staying centered and present, then daytime is relatively easy. But when you sleep — ah, then your defenses go down. That’s when anxiety can rear its ugly, poisonous, fang-toothed  head.

In the last week I have stopped running from it. Instead of popping a pill and leading myself through deep relaxation after the dream or the sudden awakening, I have chosen to use instead the light of awareness. I am journaling, asking, why did I wake up this time? What triggered it? What did I dream? Where did my mind go then? How am I feeling?

The findings: at least half the time, it’s a nightmare. Filled with anxiety, terror, panic.

About Joseph.

In my last nightmare, I was so tired and zombielike that, when I passed by a couple of women and looked at them, my deadened eyes led to them having nightmares.

Wow.

My cousin, Lisa, who also has a son on the spectrum, tells me that there’s chronic anxiety and then there’s situational anxiety. But what if it’s a situation that’s chronic — like autism?

Chronic situational anxiety? asks Lisa.

Whatever its official title, I am amazed at how deep the anxiety goes, and it’s the same for every single other parent I know who has an ASD child.

I know what hasn’t helped: running from the anxiety. Popping a pill to cover it up without even trying to look at it.

Working with the light of awareness is proving to be an amazing thing. It’s like I’m stepping aside and allowing this spotlight to go where it will, to show me what it wants me to understand.

I am humbled to see that, just like every other mortal in this situation, I am so very worried, scared, and fearful.

I am also vulnerable, open, and absolutely sure that I don’t know all the answers.

It’s a mixed bag, just like the rest of life. What doesn’t kill you makes you stronger — but, in this case, strength isn’t about squaring your shoulders and pretending it doesn’t hurt. Strength is about looking into yourself with compassion and awareness. It’s about honoring your process — and it leads to empathy with the process, the journey, of every other human being on this planet.

For me, there is now a new willingness to be aware of the deepest, darkest anxieties. Where it will lead me, I don’t know.

But I am trusting the process. The light of awareness is indeed a light — and isn’t that an aspect of God, after all?

I am also discovering that, when those formerly dark corners are flooded with light, they don’t look nearly as scary.

Obsessions Begone!

A tan, a memory, a view, a photo: There are many great things that you take home from a vacation. One of the most powerful gifts we received on our trip was a new perspective.

You see, as we were packing up for Maui we told Joseph that, since we were doing only carry-on luggage, he could  bring just two small toys along. He chose his two newest trains, procured just days before we’d left.

And that was ok. On the flight over, those trains provided some amount of entertainment for him — and later, when we’d settled in at our friends’ house,  they brought him some sense of familiarity and he played with them here and there.

Now, as I have mentioned in previous posts, Joseph is a trainiac. He loves all things trains, and his favorite pastime is to lay out those wooden train tracks and make the trains go on them. It’s basically his default behavior. So it was a big deal, for all of us, that he didn’t have enough train stuff around to occupy his attention for long.

It was, in fact, a great thing. Without trains exercising their massive tyranny over his mind, Joseph started to use his imagination in other ways. For instance, one evening he assigned Blue Eyes and me the role of the little kids at his preschool. As our teacher, he put us down for nap, came in to check on us and then, when it was time, he roused us and got us up out of bed.

There were many other ways where he was simply more present and available to us than he’d been in years.

Then it happened. A wonderful friend and her child, who live in Maui, came over to visit. My friend thoughtfully brought some toys to leave with us while we were there. Why didn’t I tell her not to bring trains? I guess because I didn’t think that her kid — a girl — would be into them. But — sigh — she was, and so when they left, we had about 8 trains sitting on our floor.

I think that sometimes Divine Mother makes things really obvious and exaggerated, so that we can be sure to get the point. In this case, we got to see how the presence of those trains deeply changed the fiber of our interactions with Joseph. Suddenly there were these huge obstacles between him and us; things we had to peer around, compete with, and play second fiddle to.

And there was no doubt about it: in the final score the trains won, and we lost.

I hear that Thomas the Train very specifically markets their products to autistic children. If this is true they are, unfortunately, brilliant at it.

A number of years ago, when we first started RDI, we had packed up all of those  blasted trains and put them away in a crate up on a shelf. We took them down only occasionally, because it was obviously an obsession for Joseph. But as time went by, we got lazy and the trains become more and more available to him. We didn’t really notice when the obsession started taking him over.

However, the difference between Joseph without trains and Joseph with trains during our trip created too much of a contrast for us to ignore.

So today we met with our RDI consultant while Joseph was in preschool. We explained the whole train thing. We talked about wanting to pack them all up again, free Joseph from his obsession. We wanted to take all his train books away, as well. I explained that my visual image of this is like removing cigarettes from him — that’s the kind of harm these things are inflicting on Joseph.

Our consultant was with us 100%.  Do it. Do it now, she told us. Not slowly or gradually, but in one fell swoop. The two of you should sit down with him this afternoon (presenting a united front), and explain why you’ve done this.  Expect him to cry, to grieve. Then have a low-key activity ready that you can do together. Take the trains down once in a while, but don’t let it be a regular thing anymore.

Fearing the worst, I stepped into Blue Eyes’ truck as they were pulling in from school. We chatted a bit, and then we explained to Joseph what we’d done, and why. We tried to emphasize that we’d done it because we wanted him to play with us – not with his trains.

It was as Kelli predicted. He cried, first with real despondency. But, as hard as it was to see him grieving, I kept getting the image of Joseph puffing away on cigarettes and me finally removing them from his reach. This made me strong.

Truth was, he got over it surprisingly quickly, though I’m sure it’ll come up again and again as he goes through withdrawals.

I do not mean “withdrawals”  humorously; I truly think that this is a serious obsessive addiction for Joseph, and that it is not going to be easy for him to give it up.

But through the afternoon and evening we kept Joseph doing things with us. He helped Blue Eyes clean the fish tank and then I played tour buses with him. The evening culminated in Blue Eyes getting out the guitar and the three of us singing Christmas carols. We felt like a real family, where every one was a  fully participating member. It has been a long time since we felt this way, and it feels so g-o-o-d.

So the parents have stepped up to bat. The kid seems happier already, though I know that his pain will come and go.

What we did today was to steer our boy away from choosing Door Number One: the non-people door. We helped him to choose Door Number Two — which, though less predictable and more uncomfortable than the world of things, is nevertheless a world of infinite dimensions, nurturing connections and richness.

It was a small step for our boy, but a huge leap for his potential to develop. We are feeling proud and competent, and I think that Joseph is already reaping the benefits of more parental attention.

Because of this change, he is a changed boy. He is learning that there are many other fun and interesting ways to interact with  the world: the wondrous, unpredictable world of non-trains.

Autism, Fear and Competence

We’ve been back from Maui for two days now. We came home, packed away our shorts and tank tops, and put on our long underwear. Yesterday evening we watched the first snowfall of the winter turn our yard white. It was pretty.

But just for these few moments, I ask to you join me once again in lovely, warm Maui, where the breezes blow such soft sweetness into your mind that you are unable to hold even the slightest of grumpy thoughts for more than a moment.

My last post had Joseph and me hanging out together at an expensive resort. After our healing time in the hotel room, we sauntered back out to the pool. This time it was a little easier for both of us. I stopped wishing that Joseph would just relax and enjoy himself like the other kids, for God’s sake, and he stopped — what? Feeling my resistance and reacting to it? Being as scared because he’d already gone to the pools once?

But it still wasn’t easy. In particular, there was a water slide in the pool — an easy, gentle one — that had Joseph scared to death. He’d watch smaller kids shoot down it — he’d stand there, watching, for long periods of time — but he couldn’t go down himself. I forced it once by pulling him on my lap and taking him down with me, but he screamed bloody murder and I got those looks from the other parents: Stupid mother! Abusive, uncaring woman! And I gave it up.

Eventually we got into the hot tub and Joseph got a little more courageous, swimming by himself small distances and just having fun. It wasn’t long before Blue Eyes joined us. Then evening fell and we watched a magical Hawaiian ceremony that Joseph still talks about.

But here’s the thing: when we left the resort, he was still scared of the pool, scared of the little slide in the pool  — just…scared.

One of the ways autism can present is in this kind of fear. There’s some evidence showing that the primitive part of their brains is not as well connected to the rational part, so all that primal fear comes up, unabated. I’d say that, in Joseph’s case, this is probably true.

This fear presented strongly around the ocean, too. Joseph was very afraid of going in past his ankles But one day I just forced it…gently. I scooped him up and carried him into the water, holding him tight and trying to make it fun. He actually enjoyed it for a bit.

Blue Eyes saw it happen and took up the theme, giving Joseph a piggy-back ride right into the ocean. When Joseph protested I showed up behind him, wrapping my arms around him and pronouncing him a Joseph sandwich. Somehow this made him feel safe, and he actually enjoyed being in the ocean for quite some time.

Then, RDI style, we very consciously spotlighted what had happened, showing Joseph how far out he’d been in the water and how well he’d done. We even took a photo so that we could remind him with a visual once we got home.

In subsequent visits to the beach, we progressed to Joseph doing some assisted swimming from me to Blue Eyes and back. And when he was on his own, he’d venture in waist-deep. Everyone felt more competent.

Being more confident in the ocean must have felt so good to Joseph. Before that I would watch him watching the other kids in the water, quite a few younger than him, and I know that somewhere, perhaps not even verbalized into thought, he was wondering what was wrong with him that he couldn’t get into the ocean like that.

A few days before we were to come back home, Joseph started talking about the resort pool again. He said he wanted to go back; he wanted to go down the slide; he wanted to put his head under the water this time.

It looked like we didn’t have time to do this, and then a little Divine Choreography occurred: the people we were house sitting for called. They were delayed; could we stay an extra day? Thank you, God. So, on our last full day on Maui, we drove the long drive to Lahaina and snuck into the resort’s pools.

Normally Blue Eyes and I have a lot of integrity. Normally we would not use a hotel’s facilities without paying for them. But our son’s special needs make us bold sometimes. He seemed to need closure on his fears, and we were curious to see what would happen. We wanted to help him. So in we snuck.

Joseph got onto a boogie board and swam around the entire lagoon twice. Then he went to his nemesis: the slide. He sent his boat down. He outright refused to go down on my lap. He sat at the top of the slide and, making sure that Dad was at the bottom should anything go awry, he slowly let go.

Many times. He conquered that damn slide. Then he put his head under the water. Then he swam on his own a fair distance.

When we left those pools (having constantly dodged the lady with the clipboard who was throwing non-guests out), we had by our side a competent, satisfied child.

Today was Joseph’s first day back at preschool. His teacher couldn’t believe it: Joseph used to have a paralyzing fear about going sledding down the long hill at the school. But this time he sat in the front and rode the whole way, twice, having the time of his life.

The moral? Never give up on your kid. Things may take longer than they do for typical kids — heck, they may not even happen in this lifetime — but when you run out of patience, remember that you can draw on the boundless patience of our Divine Mother/Father.

Most importantly, no matter what the obstacles may be, do everything you can to help your kid feel competent. That way, the (shudder) free-fall of incompetency and fear can be replaced by riding high on an upward spiral of competence and confidence.

On Vacation with Autism

I have an ongoing love affair with the Hawaiian islands. They have captivated my heart ever since my first visit at 18. I’ve been to Hawaii as a tourist, a backpacker, a honeymooner and a mother-to-be, but never before as a mother of a special-needs child.

The last time we went to Hawaii my belly was 6 months swollen. We knew it would be our last real vacation for who knows how long, so we milked it for everything we could: lots of snorkeling, going to the movies and out to dinner, lying on the beach, and reading books uninterruptedly. Since then, I have pined for the islands — the fresh winds, the warm ocean, the lush jungles, the whales and turtles and tropical fish, the relaxed atmosphere.

So when some friends offered to let us housesit at their place in upcountry Maui, we jumped at the chance. We are even missing Thanksgiving, and, trust me, my extended family is not pleased with us. But having an autistic kid is a huge challenge financially, and the opportunity to do Maui on the cheap (bonus miles air tickets, even!) was too irresistible to pass up.

I consciously tried not to lean on old memories of Hawaiian vacations. I reminded myself that Joseph has trouble adjusting to new people and new places, and that this would not be easy on him. I knew I would see other kids his age doing things with enthusiasm and joy, whereas he would be timid and withdrawn.

But, try as I did to steel myself, I wasn’t prepared for being in Hawaii with autism.

Parts of it have been okay – good, even. Joseph has surprised us in his willingness, happiness even, to hike long distances along rather difficult trails. He has some sensory defensiveness going through overgrown places – God forbid a fern should brush against him – but, overall, he copes pretty well.

Staying in one place has been a real blessing. After the first couple of days, Joseph was quite comfortable in the house. It’s quiet and peaceful here, and that has made a real difference to him.

The beach has been hard. For some reason, Joseph has always had trouble with the beach. He just doesn’t know what to do at it. He’s somewhat frightened of the ocean, so swimming is out. Unless we set him up in a role – “Joseph! Let’s build a sand castle!” – he resorts to doing his strange autistic dance with sudden, sharp movements, and singing the Pirates of Caribbean song over and over again. People look strangely at him. It’s embarrassing.

Blue Eyes signed up to finish his scuba diving certification here, which meant that, for two days, Joseph and I were on our own. I had the bright idea of us going to Lahaina with Blue Eyes for his 2^nd day of diving, and staying at a resort. This way, Joseph and I could play in the resort’s pools during the day, and Blue Eyes could join us when his training was over.

So we splurged and went to one of the more fancy spots for a night. A beautiful, lagoon-like pool snakes around, inviting you to swim, relax and enjoy yourself.

But Joseph didn’t receive the invitation. We went first to the kids’ pool. Other children, some much younger than him, went running in, jumping in, shouting and laughing with enthusiasm and joy. They splashed, they swam; they called, “Mom! Watch me!”

Joseph and I spent the morning with me trying to get him comfortable enough to enjoy the wading pool. He resisted. I resisted him resisting. He felt incompetent. So did I. A good time was had by everyone but us.

We finally retreated to our hotel room, where Joseph said he wanted to spend the rest of the day. It was 1pm.

I railed inside. Here we were in Maui, having spent a lot of money to be at this fancy resort, and he wanted to just stay in a hotel room? And play with his trains?

Ok, I reasoned to myself, let’s give him an hour. He needs some time to chill. I turned on the TV and watched Seinfeld while Joseph played. Seinfeld was funny; I laughed – I needed that – and started to let go of my judgments of Joseph and my resistances to being on vacation with autism.

It wasn’t how I wanted it to be. But, I asked myself, was I going to base my happiness on whether or not life was behaving the way I wanted it to? Or could I choose to be happy, content, with what was being given — and not given — right now?

As I got more grounded and centered in my heart, I was able to turn off the TV and be present with Joseph. I was able to love him for who he is. We sat on the patio together while he ate a snack.

I looked at him, feeling the love in my heart. He looked back; we communed deeply with our eyes. Then, suddenly, he chanted a long “Aaauuuuummmmm” and, still chanting, placed his palm on my ajna charka at the spiritual eye. He held it there for about 30 seconds before taking his hand away and smiling at me.

He’d never done that before, and I don’t know where he got the idea to do it. But it lifted me to a new place, where I realized anew that this is a great soul acting out a role. And that this is a role he has taken on as much for me, for my growth and learning, as for his own.

I’ve always loved the Sanskrit phrase smritti, meaning divine remembrance. That little act of Joseph’s has reminded me to look beyond the surface of this life – to see that the embarrassment, the resistances, the heart’s contractions – the messiness of life in general when you have an autistic child – are all leading to a place of openness, strength and ego-unraveling. A place where the channel of love can flow more freely and more fully.

So, yes, on the surface we are simply – and frustratingly — on vacation with autism. But just as diving beneath the surface of a warm Hawaiian ocean allows one to become aware of a whole different world, full of wonder and harmony, we also have the invitation to experience our vacation in a vastly different way.

This is one invitation I don’t want to pass up.

Later that afternoon, we made it back to the pools. More on that in my next post.

Aum, shanti, and aloha.

Going Au Naturale

At first, it was just changing to a gluten-free and casein (dairy)-free diet.

And that was a lot — especially because, in one of those ironic twists of nature, we covet those things we are most allergic to. So by the time we got Joseph on the GFCF diet, his meals consisted almost entirely of cheese, crackers, yogurt and toast. It’s all he would eat — and, as his mother, I simply couldn’t refuse him and let him starve.

So the diet change was a huge shift for all of us, and perhaps I will write a blog about it sometime. But today I want to cover what happened after the shift.

You see, as the cliche says, one thing leads to another.

Even after Joseph was well into the diet, he was neither pooping nor sleeping through the night. Addressing the sleep issue, our biomedical doctor said, try an air filter in his room. We ushered in RabbitAir (another few hundred dollars into the Cure Autism kitty) to clear the allergens from his bedroom full-time.

Then I cleaned EVERYTHING in his room, looking for mold, dust, and anything else that might possibly maybe perhaps please God be causing his waking up — so that we could eradicate it and have a kid who slept through the night.

When that didn’t work, I did more research. As are most ASD moms, I became a Google Queen. Check other allergens, Google urged me. What is in his shampoo, for instance? Is there aluminum in your cookware? How about your household cleaners? Laundry soap?

Out went anything artificial, and ‘most anything with a fragrance. In came Le Creuset cookware (let’s don’t even think about how much that put into the Cure Autism kitty) and environmentally-friendly laundry soap.

I learned to make my own cleaners. One more thing, I grumbled to myself when I began. As if I don’t have enough going on in my life.

But the truth is, a little distilled vinegar or baking soda can go a long way, and they are incredibly easy and inexpensive to make. The Google Queen found many “recipes” for these things online, and is very happy with how well they clean.

The bottom line is, we were always into living naturally and greenly (new word — do you like it?). But Joseph’s sensitivities forced us to do it more deeply, more thoroughly. And I LOVE living in a chemical-free home. It feels light and clean and fresh.

So, going au naturale is just one of those unexpected gifts that we didn’t see coming on this most interesting journey.

If Joseph wasn’t sleeping through the night most of the time, we would pull up his carpet and put in wood flooring.

But I dare not try to fix what’s finally working. Sleep is one of the most precious of all human gifts, and, knowing the precariousness of it, I thank God every morning for another night of it.

A Few of my Scariest Things

First and foremost, I’m scared of autism. When I see Joseph doing his strange movements, when he doesn’t answer my questions, when he just seems zoned out, I’m scared. Scared that I’ve lost him, scared that other people can see he’s autistic, scared that he’ll never make it in mainstream society.

Scared of what will happen to him after Blue Eyes and I die. Scared that kids will make fun of him, bully him, douse the laughter and joy in his eyes.

And now something incredibly scary lurks. Just around the corner, in the shadows. I feel it constantly.

“It” is school.

I live in a small town, so it’s easy to keep in touch with the other ASD parents. Naturally, I’ve been keenly interested in what happens when their kids start school.

It’s not looking good. Charter, public, or private school, these kids are having a rough time of it. One kid, extremely bright and personable, is exhibiting such antisocial behavior that they’ve put him in the classroom with the severely impaired children. Another is having such a difficult time adjusting that the school requires one of his parents to be there with him full-time.

Scary indeed. And these are good schools. I am not naive enough to think it’ll be any different for Joseph.

I’m in the middle of Barack Obama’s book, In My Father’s Dreams. When he was an organizer in Chicago, he worked in a neighborhood rife with gangs, drugs, and people isolated behind their locked doors. A scary situation. But as he worked with these people, they began to realize they could make a huge difference — when they pulled together. And so they did.

Inspired by this, I sent out an email today to my little ASD community of parents with early school-age kids. I don’t know a solution, I said, but I think we’ll do a lot better together than we will alone.

People all over the world are facing the dilemma of their ASD children not fitting into schools. Surely some are working out solutions. Let’s pool our expertise, do some research, figure out what we can do, I wrote.

One mom has written back to say this:

“I am so in! I am really, really struggling. I would love to touch base with people who get that I am existing in an alternate experience from other moms with 7 year olds. They tell me about how proud they are about how many books their kid has read. I’m proud that my kid didn’t hit the Down Syndrome girl in the head again when he threw his dry erase board for ‘writing without tears (yeah, right!)’”

Scary.

I’m waiting to hear from the others. This – joining together for support and manifestation — is not scary. It’s exciting! Together we can make a dramatic shift — for our children, and for those children to come.

So maybe fear has its place. Sometimes it’s just old baggage, of course, but sometimes it has something important to say. And in these cases,  a mature, compassionate response could be to reach out, join hands, and let it spur us into action.

The Take Back the Night movement comes to mind. It symbolizes women’s individual walk through darkness and demonstrates that, united,  women can resist fear and violence.

ASD parents: The schools are not in charge. We are. Time to take back our kids!

ISO: Serenity

It’s Joseph’s screaming that gets me more than anything else. Or maybe it’s his screaming on top of major sleep deprivation — for both of us.

I mean, I understand that regression is part of moving forward for ASD kids — and even, in less extremes, for all kids. But just now it seems that we’re spending equal time in both departments. And I’m getting bloody tired of regression.

Do you have any idea what it’s like to feel that your kid is — after years of hard, non-stop work — recovering from autism: looking you in the eye, speaking with you, sharing his inner world with you — and then to have him fade away again before your very eyes?

Actually, “fade away” doesn’t do it justice. He’s screaming. He’s barking like a dog until late in the night and early in the morning. He’s fixated on certain things, like our cat’s comings and goings. And he’s very, very anxious.

So I’m not sleeping well and I’m feeling pretty anxious myself. As a long-time yogini, I give myself a really hard time about not being able to stay even-minded through these things. And then I give myself shit about giving myself shit. I mean, why can’t I lay off myself and have a human experience sometimes? Why do I have to be Super Yogi all the time?

Maybe it’s time to get my father’s critical voice out of my head. But we’ll save that subject for another blog.

Blue Eyes wanted to leave early for work this morning. I told him he needed to stay because I was going to abuse this kid if I was left alone with him.

It’s not true in the legal sense — certainly I wouldn’t have hurt him physically. But emotionally I was ready to break down and scream right back, say some things I’ve never said and, God willing, never will say. Things like wishing sometimes that he’d never been born or how sick I am of his autism — that kind of thing.

I’ve taught yoga and meditation for 20+ years, and so have probably told people thousands of times to breathe. But sometimes it is just hard to breathe. And if you can’t breathe some of those full, deep, renewing breaths, then your mind and body are both really tense. That’s where I was this morning.

After I dropped Joseph off at preschool, I drove to a nearby trail and took a walk. I walked fast, for two reasons: I had pent-up energy to expend, and I knew it would force me to breathe.

So there I was, walking up a hill, breathing (finally), and suddenly I remembered: it’s all stories.

It’s all stories! The mind makes ‘em up like crazy. Especially when we panic. And if we believe the crazy, anxious mind making up wild, horrible stories that very likely won’t come true, then we go into a downward spiral. Anxiety, crazy thinking, scary stories, anxiety, crazy thinking, scary stories.

I am discovering (again and again and again and again) that the answer to everything is this: BE PRESENT. Even more fun, be present with an open heart. Feel the Divine presence, look for it, listen to it, and know that guidance and help are here. Now.

So this blog’s title, In Search of: Serenity, is a catch-22. If you’re in search of something, it means you don’t have it. It is something you have to obtain, procure, acquire somehow.

When I am present, when I let go of the stories, then serenity is who I am. There is no need to go anywhere or to do anything to get it.

Right now I have an easier space in which to be present and open. In a few hours I will pick up Joseph and it will probably be more of a challenge (or so says my mind). Well, I’m going to practice now, while it’s easier, and we’ll see what happens when it does.

The very nature of life is impermanent. I am playing the  role I have chosen and Joseph is playing the role he has chosen.  It won’t last forever; it is only now and now and now.

Peace.

Anything Different is Good

The title of this post comes from the movie Groundhog Day. Remember that movie? Every day it’s the exact same thing, for God knows how eternally long. Then, finally, one day it’s different — and Phil says, “Anything different is good.”

Blue Eyes and I have been quoting this line to each other ever since the autism diagnosis. What is it in these kids that makes their minds get stuck on something?

RDI labels inflexible thinking as one of the top five  deficits of autism. Joseph doesn’t have it to extremes, but we do see it.

For instance, Joseph has had these words that he wouldn’t say. Refused to say. There seemed to be no rhyme or reason to why he chose these words not to say.

Those words were: coffee, Aunty Wendy, Kristin (a girl in his preschool), trick or treat, and ambulance.

He also gets stuck on clothes. Last winter, for example, Joseph loved his flannel railroad jammies with the long sleeve shirt and long pants. He got so stuck on them that he insisted on wearing them every night during the hot (as in 90-100 degrees F) summer. If you scan through this blog, you’ll see him in them in several posts.

But here we are, 3 + months into Valtrex (anti-viral — see biomedical posts). At first, the Valtrex Joseph sprinted out of the gate, leaving the old Joseph in the dust. We hit a little regression here and there and then, most recently, a plateau that lasted a couple of weeks. We considered taking him off Valtrex…wondered if it was time…

But now he’s got a second wind. When we first started the Valtrex we saw the most changes in vocabulary, eye contact, use of names (finally), that sort of thing. This time we’re seeing what I officially call Unstuckness.

Unstuckness.

Note the photo at the top of this post. This is Joseph in his green-striped pajamas. He has worn these now, on his own initiative, for two nights in a row. Blue Eyes and I almost fell over when he walked into the kitchen wearing them.

He’s choosing other new clothes to wear, but it doesn’t stop there. He’s saying those words — after more than a year! All of them but ambulance, and, in truth, he is pretty darn scared of ambulances and the noise they make, so “white thing” is a safer substitute.

And, hey, how about this: he answers people when they say hello. He tells me, “I can do it myself!” He is thinking carefully about choosing the right pronouns before he says them.

I happened to get Joseph’s last swim lesson on video. There is a great moment where he jumps in the pool and then tries 3 times to get the teacher’s attention in order to acknowledge how well he jumped. He finally gets her attention by saying, “I did it!” loudly and with pride.

I sent that footage to my RDI consultant, who responded that it brought tears of joy to her eyes. Tears of joy in our consultant is very different — and very good.

So, to those of you who are going through the agonizing monotony of sameness, I say hang in there. I know the physical and soul weariness of that inflexible thinking. But don’t give up on your kid. Amazing things can happen, if we can be resilient and open.

Anything different is good. And when it’s good, it can be R-E-A-L good.

Shaking it up

Blue Eyes is from a little island in the South Pacific and I am a California girl. We met somewhere in the middle: India, where we were both on spiritual quests. After spending a good chunk of time together there, we went trekking in Nepal and then stayed in Thailand for a while. Four months after we parted, I went to his country and lived there for six months. Then he came to the US to live.

In other words, we love adventure! It is one of the things that drew us together and something that we find really fun.

So it is an odd thing to have a child who is, at best, uncomfortable in new surroundings and, at worst, will scream and melt down or withdraw into his own world in order to cope.

Blue Eyes and I did a lot of scheming on how we could get around this. How can you travel and have a comfortable familiarity at the same time? We finally settled on buying an old recreational vehicle (RV), which we fixed up. Kids love RVs, so we had that going for us right away. And this way we could go new places, but we always slept in the same place and, more often than not, ate in the same place as well.

It took some resilience, but at last our scheme seems to have paid off. Joseph knows the RV routine and is very comfortable in it. He likes the little bathroom (and uses it, if you get my drift) and sleeps well in his little bed. It’s not crossing the Nile or sleeping with the African lions, but here we are, on the coast, having a great time with our trusty old RV.

It is good to break Joseph out of the same old routine. The autistic mind tends toward the static. Many of these kids, Joseph included, train their parents into keeping things just the same — that way we avoid tantrums, fits, meltdowns, etc.

After I was well-trained by Joseph, RDI came in and trained me differently, teaching me to shake things up for Joseph so that he learned how to adapt to, and be more comfortable with, dynamic situations.

You don’t want to push your kid off the cliff and say, “Deal!” but you do want to shake the foundations a bit so that they learn how to dance.

Even though I love the travel type of adventure, I don’t adjust so well to other changes. The one I can think of off the top of my head (!), for example, is having a child with autism. What a HUGE shake-up this has been for me. I went through all of those lovely stages of grief, and I think I am only now starting to land on the last stage: acceptance.

There is a saying: we cling to a spiritual teacher because our foundation is being shaken — only to find out that it is the teacher who is shaking our foundation.

Sigh. What if it’s true? What if my kid having autism isn’t an accident — what if it’s truly what has been given to me, and him, and Blue Eyes, and the world at large?

I am coming to a new conclusion. Of course we should work toward Joseph being all he can be, but at the same time I am focusing on being grateful for what has been given, knowing it is intended for me, and asking for nothing more than that in this moment.

It is becoming readily apparent that adventurous souls don’t have to travel outwardly to learn and to grow: God provides inner adventure, as well. With all the changing landscape of motherhood and autism, my “RV” has been meditation and prayer — holding onto that Divine Presence, as best I can, through it all.

At this point, when both feet are touching this new ground of greater acceptance, I give humble thanks for the privilege of this adventure. God’s got the topo map, but I can listen to His/Her inner guidance and take one step at a time.

I am starting to trust that even the shaking foundation is taking me where I want to go: ever closer to, ever deeper in, Spirit.

Resilience

After all these amazing leaps in development, in the last few days Joseph seems to have taken a horrifying, frightening, quantum leap backwards.

We are seeing behaviors that we haven’t seen in so long we’d almost forgotten them: weird tracking with the eyes, autistic-like movements, shying away from other kids, a decrease in vocabulary.

This morning was the worst. He just screamed and screamed. It was as if he were in some inner pain or turmoil, but he couldn’t possibly communicate about it to us.

Sigh.

Note to self: Breathe. Don’t panic. Resilience, resilience, resilience.

My RDI consultant seemed to talk about resilience incessantly when we first got on board. I didn’t really know what she was talking about, so I’d nod and let her go on without paying too much attention. I was focused on trying to survive the torture of sleep deprivation and get a grip on what autism was. Who had time to worry about the concept of resilience?

It is my observation that survival comes before resilience on the life pyramid.

But as the survival part came more into balance, the concept of resilience started to take on some meaning.

According to Gordon (Confession: I don’t know who Gordon is. This is a quote I found somewhere on the internet.): “Resilience is the ability to thrive, mature, and increase competence in the face of adverse circumstances. These circumstances may include biological abnormalities or environmental obstacles… To thrive, mature, and increase competence, a person must draw upon all of his or her resources: biological, psychological, and environmental.”

Resilience is a huge thing in autistic children — or, rather, the lack of resilience. RDI maintains that, due to a major feeling of incompetence, these kids feel like failures from the get-go. It’s much easier for them to give up than it is to “thrive, mature, and increase competence in the face of adverse circumstances.”

Joseph, for instance, used to give up all the time. He’d give up on getting people to notice him or play with him, on understanding new concepts, on toys that were a challenge, and on trying new things.

He wouldn’t even repeat something when you hadn’t heard and asked him, “What?” He’d given up on communicating after the first round.

But I think that, while it’s paramount to develop resilience in autistic children, it is possibly even more important to cultivate it in their parents.

In the early days, we’d try to engage Joseph in something and, when he resisted, we’d give up. We didn’t have the energy or the motivation. We were scared of being failures. It was easier not to try.

The entire family was drowning in incompetence. No wonder our consultant wouldn’t shut up about resilience!

Eventually resilience turned up as one of our RDI objectives. I forget its official title, but the gist of it was that when my kid tried to get my attention, I was to turn away a number of times and he was to persist.

We tried and tried with this, to no avail. I will never, ever forget the day it finally clicked. Joseph was trying to get me to make this funny sound back at him. He made it over and over to me, even though I was turned away. When I finally turned to him and made the sound back, he laughed really happily.

What was it Churchill said? Never, never, never give up.

That goes for spectrum kids and us parents. Our kids need to know we will never give up on them.

And yet here are Blue Eyes and me, being stared down by an ugly regression. I have to ask myself, why is failure so bloody easy to give into? After so much encouragement with Joseph’s development, for instance, why is it so tempting right now to give up in despair?

It’s just a glitch, Yoga Mom — a tiny blip on the radar. In a week or two, you’ll look back and wonder how you could possibly have let your spirits sink so low yet again.

Tell me again, Gordon: to thrive, mature and increase competence in the face of adverse circumstances.

In other words, to keep on keeping on. To see life in the longer rhythm – the forest instead of the trees. To focus confidently on where we’re going and, since we’re not sprinting there, to take baby steps in that direction.

There is another side to this that must be mentioned. As a fellow minister once said to me, Satan loves it when we don’t ask for help. Now, whether or not you believe in the red man with horns, we can probably all agree that, when things get difficult, there is the temptation to sink down into darkness, depression and despair. And it’s so much easier to do this when we feel isolated.

I can pray easily enough, but it is not in my nature to ask another human being for help. In fact, I despise doing it — but this morning I called our naturopath. On a Sunday. And I cried on his voice mail.

Just that little phone call, even before he called me back, made me feel so much better. I guess part of the pain is feeling so very alone in all this autism madness.

*                                           *                                      *

Now it is nighttime. Joseph’s just gone to bed. Something turned for him this afternoon. Clark Kent stepped into the phone booth and, once again, Superman ran out. Suddenly Joseph is once again GREAT — funny, literally slapping my hand away when I tried to help him, coming up with more imaginative play than we’ve ever seen.

Resilience.

Let’s make a deal, shall we? Let’s never give up on our kids, and let’s never give up on ourselves. Let’s cultivate strength, courage and faith while it’s easy — so that, when it’s hard, these qualities will see us through.

And let’s have the vulnerability, the humility, to reach out to someone else — someone we can lean on when it’s just a little too difficult to stand up all by ourselves.