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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

 

 

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

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

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

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

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

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

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

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

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

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

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

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

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

I teach yoga for the staff at Joseph’s school, and one of the regulars is his special ed teacher, Dana. Usually we focus on yoga but, every now and then, she’ll share with me a tidbit about Joseph when class is over. Last week, for instance, she wanted to tell me about the “miracle” that happened.

For months Dana has tried to get Joseph to leave his session with her and walk into the cafeteria (for lunch) by himself. Now, the cafeteria is a challenge unto itself, being noisy, crowded and somewhat unstructured, but the big deal was that he’s always refused to go in without his aide. On the day of the miracle, Joseph walked over, found a friend, and went into the cafeteria with him. And he’s been doing it ever since.

Wonder of wonders, miracle of miracles!

Another one: This morning I walked Joseph to his classroom. Never, ever in the past has he allowed me to leave before his aide shows up, but today he let me kiss him and go. Wow! On my way back to the car I saw his aide coming up, and I excitedly told her what happened. “Yup,” she replied. “Takes about 100 repetitions and then he can do something.”

I laughed. “Blue Eyes and I say it takes 500!”

Repetitions. What a great way to learn patience. What a marvelous way for my character to be formed. What great sandpaper for my rough spots.

Will it ever end????

Sigh…probably not. And it gets more complicated. Now we are endeavoring to teach him to speak to us with respect, to clean up after himself without being reminded…that sort of thing. It feels endless. Maybe it is. Maybe every parent feels this way. Maybe I’m going to set myself on fire.

sugarEaster was full of sugar, and right afterward we took a week’s vacation. Think ice creams and other sweet things — the kind of thing you do when you’re on vacation.

Trouble is, by the time we got home, we saw that candida had taken over Joseph. He was spacey, stimmy, tantrummy, and an overall pain in the butt. We put him on a sugar-free cleanse, which has been devastating for him. Almost every morning he wakes up and starts an argument with me. When can I have sugar? Can I have it if we go to the lake in the summer time? Can I have it on June 6th, the last day of school? Can I have a soda the next time I go to a restaurant?

It’s relentless. I am trying to do my Love and Logic — I love you too much to argue — and leaving the room, but this kid will not let it go. It’s a major struggle.

Our Love and Logic Instructor once wrote on the whiteboard four big letters:

C
T
F
D

 

Calm The F*** Down.

i pray for long-term perspective. For more patience during these phases that require so much repetition. I pray to remember that things take longer with Joseph, and that I need to take care of myself in order to deal with his special needs. Last, but definitely not least, I pray  to CTFD in those trying times.

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.

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

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

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

“What’s going on?” I asked casually.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Joseph started a social skills group last week. We are calling it a playgroup but nonetheless it is a social skills group, led by a Speech Therapist named Daphne.

Joseph has been having some trouble parting from me when it’s time to go to school. It had become something of an issue, even bringing me to tears as he would cling to me outside his classroom, crying and pleading with me not to go. Picture the anxious kindergartener clinging to their parent on the first day of school, and you’ll get the picture. Except that Joseph is in third grade and it’s been happening every day this year.

This shifted recently, and the only things I can credit that to are time and the fact that I shifted, as well. I decided not to get anxious when Joseph got anxious, but to calmly kiss him, tell him I loved him and I’d see him later, and leave. This actually made a big difference, and I’ve been feeling really good about it.

So. We go to the social skills group for the first time. It’s just Joseph, Daphne, a boy named Luke, and a teenage helper. Luke’s mom stays in the waiting area, which is a very short walk from where the kids are meeting.

Joseph, however, will have none of that. I have to walk over to the room with him, which I do. Then I try my kiss-and-go approach, with the reassurance that I’ll be right in the waiting room.

Joseph will have none of that, either. Clinging, crying, embarrassed but determined, he says, “Don’t go, Mom! Don’t go! Don’t leave me!”

windowI don’t want to stay in the room with the group, so Joseph comes up with a plan: I am to sit outside the room in the hallway, facing a window that has the blinds drawn, so that he can occasionally pull the blinds aside and make sure I’m still there.

Sigh. I pull up a chair and sit in the hallway. I listen to the muffled sounds inside the room. I can’t see anything around the blinds. I am very thirsty but I don’t dare walk to the lobby for some water, in case he looks out and I am gone. I have no book, nothing to do but stare at the window for the next hour.

So I sit there and contemplate the fact of suffering.

Suffering, Gangaji says, comes from an idea we hold of being a victim. Whether it’s God we hold accountable, or circumstances, other people, ourselves or whatever, we have the idea that we’ve been wronged. Whenever we remember the wrong/s, there is thought, emotion, and momentum around it. What would happen, she asks, if we just let it go. Yes, we’ve been wronged — sometimes terribly so — but maybe it’s time to stop punishing the tormenters, even if they don’t deserve it!¬† She invites us to experience putting an end to victimhood and feeling joy instead of suffering, just for a change. That way, she says, if we want to go back to suffering, at least it’s a conscious choice.

So, the window seems to ask me, what’s it gonna be? Is this an hour of suffering or a chance to relax with me and enjoy some quiet contemplation?

It is tempting to feel wronged. Wronged by autism and wronged by an anxious kid who makes me sit and stare at a window for way too long. But I kind of choose the latter. I mean, it wasn’t too bad, really, sitting there for an hour. Eventually I even got someone down the hallway to bring me a glass of water.

What I’m saying is, I’m really looking at suffering and victimhood. I know that if I can work with my inner narrative, then no matter what is happening externally, I can be content. Yoga is all about living from the inside out, rather than the outside in.

It’s a funny thing, listening to Gangaji. The people who come up to speak with her are often full of suffering. They have stories of great sorrow, or mighty struggles going on in their lives. But by the end of their talk, they almost always end up laughing. Really laughing, I mean. Like they see it’s actually hilarious. Like they finally are in on the joke, and what a joke it is.

I fully expect to be staring at that window again this week. But this time I’m coming prepared. I’m bringing water, a book, and even more conscious choice. I want to laugh hilariously! I want to put an end to feeling like a victim and embrace the joy beyond the story. It is a great story — and what would I post about without great stories? — but, like the lady says, how wonderful to be conscious about whether or not one buys into the suffering.

Twenty-two years ago, on Labor Day Monday, our house burned down. Blue Eyes and I were working fifteen miles away when we got the call.fire

It was a neighbor on the phone. He said, “I don’t know how to tell you this, but your house burned up and everything you own is gone.”

“Everything?” I asked, unbelieving.

“Yes, everything,” he answered.

“Everything?” I asked, incredulous.

“Yes, everything,” he answered again.

“EVERYTHING????” I asked, as the reality started to sink in.

“Yes, everything,” he answered.

Toward the end of our drive home, we turned onto our rural road and five fire trucks passed us, one at a time. We knew where they’d been, and we knew that nothing was left.

Ashes. Everything we’d owned was ashes.

The fire had been put out, but the burn continued. It felt like a burning to lose so many of the things I loved. It burned to have no clothing, no photos, no toothbrush. It burned to have nowhere to live. It especially burned to be helpless, to be so in need of other people’s generosity.

One of the things I remember most about that time was that, only days after the fire, I went to a business convention with a colleague. One of the booths was giving out free t-shirts, as they often do, but they had a restriction: only one per company.

They were really nice shirts. George and I looked at each other. “Oh, go ahead,” I told him. However, I said it with an agenda: George knew of my situation, so I was pretty sure he’d insist I take the shirt.

He didn’t. Happily, and with some greed, he claimed a shirt in his size and walked away.

I remember that burn, too: the indignant burn of one more nice thing that had come close to my grasp and slipped away.

I only write about this because this morning I was listening to Gangaji, and she talked about the burn. I didn’t know anyone else had ever defined it as a burn, so it caught my interest. She spoke of our wants, our desires, and how, when we don’t get them, it burns.

That’s why autism can burn. It’s the club we never wanted to join. It’s taking our kids to the social skills group when we’d rather they be in scouts. It’s staying home from the crowded gatherings when we’d rather be part of the gang. It’s often a slow, steady burn, but sometimes it bursts into flames.

One of our biggest personal burns centers around music. Blue Eyes and I are very musical, but whenever we try to play music, whether it’s live or on a CD, Joseph has screamed, cried, and basically thrown a fit. We have let that control us for many years now.

jamboxRecently I taught a yoga class, but arrived without anything to play my music on. A student came forward with his Jambox, a  great-sounding little speaker that played my music beautifully. I was so pleased that I came home and ordered one for myself.

How, though, to deal with the Joseph Factor? — I wondered. I decided to start in one place: my bathroom. When I took my morning shower, I played music, loud enough that I could hear it with water raining down around my ears. When Joseph complained, which, of course, he did, I expressed empathy, but told him it was my¬† Jambox and I could do what I wanted with it.¬† If he didn’t like it, he was welcome to leave the area.

After a few times, the crying, moaning and complaining stopped. Then he started hanging out in the bedroom next to the shower so that he could listen to the music.

Then Blue Eyes started playing while he took his shower. No complaints this time.

My next push is going to be to play a little bit of Jambox while I make dinner. This ought to be good. Get ready to burn, Joseph.

He still hates my harmonium (keyboard) playing, though. I used this to my advantage the other day. Joseph was messing around, taking a long time to get ready for bed. I was nagging him to stay focused, hurry up, and all the other parental drones that happen around bedtime. Then my Love and Logic training kicked in, and I stopped nagging.

I remembered that I can’t control Joseph. The only person I can control, with any success at all, is myself.

So I said to Joseph, “I’m feeling stressed that you’re messing around at bedtime. I’m going to go play¬† my harmonium in order to calm myself down.”

It was great. “No, Mom!” Joseph said, ‘I’ll focus! I’m focusing now!”

And indeed he did. For a few minutes. Then he forgot and started mucking around again.

I didn’t say a word. Just sat down and played a lovely, uplifting chant on my harmonium.

By the time it was over, I felt better and Joseph was completely ready for bed. Can’t beat that!

In the Hindu world, the fire ceremony is a sacred act of purification. You offer into the fire all the obstacles, desires, etc that are blocking you from Self-realization — from knowing your oneness with the Divine. Twenty-two years ago, Blue Eyes and I had a big, real-life fire ceremony, but, happily (I guess) the burning continues.

My wish for you and for me is that we experience the burning with gratitude and awareness, knowing that what is being burnt is all that is non-essential to our highest Selves.

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.

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.

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

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

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

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

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

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

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

Kahlil Gibran says:

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

* * *

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

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

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

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

Which, of course, is where he is anyway.

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

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

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

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

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

Your grip’s too tight.

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

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

But grip I did.

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

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

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

But.

It’s time to relax the fist.

It just is. It simply is.

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

…and free fall.

free fallEver wonder what it feels like
to free fall?

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

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

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

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

* * *

My arm is getting better.

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

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

But I won’t.

I am reading a great book , a true story called Dying to be Me. To make a lovely long story extremely short, this woman had a near-death experience (NDE). One of her insights there was this:

I understood that I owed it to myself, to everyone I met, and to life itself to always be an expression of my own unique essence…Being inauthentic also deprives the universe of who I came here to be and what I came here to express.

She writes about the ultimate perfection of everything. She was given a choice: If she chose to die, for instance, her husband would soon follow her, and that would be perfect! On the other hand, if she chose to go back, she and her husband would work together on their passion, and that too would be perfect!

I look at Joseph and I wonder about the perfection of his autism…and the perfection of being his mother. This week has not felt like perfection. Blue Eyes just started a new building job and has been absent until bedtime, school has been doing STAR testing so the routine’s been totally different, and the teachers are trying to make up for it by plying their students with wheat and sugar. In other words, I’ve been single-mothering an off-balance, artificially hyped-up kid who, this week, melts down regularly and can hardly put two sentences together in a coherent fashion.

In meditative fashion, there is the part of me who objectively watches myself fall apart. “Huh! Interesting!” It observes. “She can’t keep it together even though she knows it’s not for real — even though she’s practiced for years staying calm on the inside no matter what’s going on externally.”

The other part of me, hooked-in emotionally, despairs for today and tomorrow. Not only tomorrow tomorrow, where he probably will once again wake up way too early and I won’t get my meditation time and he will be tired and crabby and a royal pain in the butt. I refer also to the other tomorrow: you know, fellow autism parents — the one where your grown-up autistic kid is alone, isolated, lonely, impoverished, homeless, and terribly mistreated by his/her fellow man. Yeah, that tomorrow.

Not my idea of ultimate perfection.

Anita Moorjani, the author of Dying to be Me, was living a life consumed by fear when she got cancer. After four years of fear and struggle she succumbs to death, where her “deceased” father and “deceased” best friend tell her to go back and live her life fearlessly.

I have wondered about people who have amazing NDEs: Do they ever have a bad day afterward? Anita says she has times where she feels disconnected:

When we live completely from the mind over a period of time, we lose touch with the infinite self, and then we begin to feel lost. This happens when we’re in doing mode all the time, rather than being. The latter means living from the soul and is a state of allowing. It means letting ourselves be who and what we are without judgment. Being…means that our actions stem from following our emotions and feelings while staying present in the moment.

Oh yeah. I can stop and just breathe for a moment. I tell my yoga students that one of the great things about the breath is that it’s always present — so, the moment you tune into it, you too are present. That gets you out of your crazy mind for a blessed moment, which can create a gateway into more moments of realizing our connection with the Universe — and, oh yes, even the ultimate perfection of it all.

Ram Dass talks about how we are all sandpaper for each other, smoothing out each other’s rough edges. Well, this week Joseph has been one hell of a sandpaper for me, and having my rough edges worked on has not been comfortable.

But those who get more than a glimpse of the other side come back and tell us to get out of the comfort zone. Live your life fearlessly! They say. Be totally authentic! Know that you are deeply loved and cherished, simply because you are you!

Breathing this in. Somewhere in my soul I know this is the truth. I know my son is just perfect and so is this life of mine, which gives me endless opportunities to practice profound teachings in the cold light of day.

Endless opportunities to open to the perfection of this moment. Endless opportunities to let go of fear and embrace the gift instead. To go forward in faith and security, loving and feeling loved.

Amen.

 

In the first years after Joseph’s diagnosis, we focused much of our energy on the biomedical side of autism. Earlier blogs have a lot to say about Joseph’s gut issues and sleep issues, and the many treatments he/we undertook. Even our first RDI Consultant admitted that there was virtually no change in Joseph their first year together, because he was simply too sick physically to advance in any other way.

Joseph was gluten-free and casein-free from ages 3 to 61/2. He was also virtually sugar-free. We saw a lot of progress in those years. Expanded vocabulary, bowels that actually moved, more social engagement. Eventually even sleep, oh thank God.

And Then There Was Public School.

In kindergarten, I made a batch of gluten-free cupcakes to stash in the teachers’ freezer as a substitute for any birthday cupcakes parents might bring in. I gave the teacher GF crackers to keep. She gave me the heads-up when anything untoward was happening, foodwise, in the classroom, and I’d scream up some reasonable facsimile.¬† Happily, Joseph got out before lunchtime so we mostly didn’t have to deal with what the other kids were eating — and, sigh, the hot lunches that you can buy.

When first grade hit, it was all over before we knew it. In the second week of school,  the school secretary called: Joseph had had two hot lunches already, and when were we planning to pay for them? I have yet to see a hot lunch without gluten in it, and it always comes with a container of milk.

I got a little hysterical at this news. I couldn’t decide whether to laugh or cry that my son had, of his own accord, broken the diet that had done so much for him. I called Blue Eyes, and we decided to just roll with it. Since then, we’ve been GFCF at home but not when we’re out. Two hot lunches allowed per week. It’s worked pretty dang well.

Until recently.

It started with the chewing. He’s always been a chewer of pencils and the occasional shirt collar, but suddenly he had to have something in his mouth all the time. Hankies, soaking wet and well-chewed, would hang down from his mouth. Sleeves became soaked with saliva.

Then he started stimming more. Flapping, doing his music (humming, singing) so much that he couldn’t stop it to concentrate on his homework or his food.

But worse — much worse, if you ask me — is that he began sleeping badly. Awake in the middle of the night, awake way too early in the morning. Tired and grumpy all day long. Near tears because of the tiredness. When Joseph doesn’t sleep, I don’t sleep. It was like old times — bad.

And every morning, as soon as he’d come downstairs, he’d ask for sugar. Chocolately Koala Krisps or Gorilla Munch or yogurt tubes or candy or cookies.

As much as I adore denial, I could ignore it no longer. My son has Candida.

Yeast outbreak is very common in autistic kids. In those early days we used healthy eating, Nystatin and various natural supplements to control it.

It’s different now. Sugar and starches seem to be a natural part of public school, and we have felt powerless to stop it. There’s something about a kid who is inherently different from the others telling me that “All the other kids get to eat it!” that quickly wears down my resistance. After all, I want him to be like all the other kids.

But now it feels like do — or die. So, we told him, he is off sugar for the time being.

Ohhhh it’s hard. Every day except today (so far, anyway), Joseph has had major meltdowns about missing sugar. Little does he know that this makes me all the more determined. We’ve upped the Grapefruit Seed Extract and the Corcumin. We are starting on a new product, inspired by the folks on the blog A Ventography, as soon as it arrives in the mail.

After a few days of slogging through — no sugar and no sleep and no improvement – ugh! — we are starting to see some progress. Sleep is going better and the chewing is slowing down a bit. More than that, even: Joseph is suddenly more cheerful. Can Candida make a person act like an angry, sullen teenager when he’s only eight? I don’t know, but the change is a very welcome thing.

Joseph keeps asking about Valentines Day. Can he have sugar then? Candy hearts and all the other goodies that his fellow students will give him? I am finding it¬† hard to say no. I am saying that it is his choice: he may be feeling so much better without sugar that he will decide to pass it up. I am not as mean as I act; this mama’s heart simply can’t say no to Valentines treats. If we have to deal with a flare-up, we’ll all learn something from it.

The older I get, the more it registers that life is full of seasons. This season is harder than some, but truly it’s just a season. I’m holding on to the concept of effort over time: the idea that effort, consistently applied over a good amount of time, will make more difference in one’s life than almost anything else.

Body, mind, emotions…it’s all so connected. It’s a microcosm of the macrocosm, because we on this earth are all deeply connected as well. Wishing you health and happiness in all of your connections.

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.

When I think of my life, sometimes I get the analogy of a boxer. There I am in the middle of the ring, swinging, dodging, doing my fancy footwork and, let’s face it, going down on occasion.

Then I’m off to the corner getting fixed up by my various support people. They stitch up my lip, wipe the blood away, massage my shoulders, and send me out for more.

In the boxing ring of life, I have both unofficial and official support people. The unofficial would be my friends and my family, but the official includes my chiropractor, my massage therapist (occasional), my naturopath, my ob-gyn, and my haircutter.

Your haircutter? I hear you ask. Yes, my haircutter. His name is Jeff, and we’ve had many self-disclosures in the years we’ve been together. He’s interesting as well because he’s somewhat spectrum-y. He swears that when he was young he was really autistic – completely lost in his own world. His abusive mother would get so annoyed at his unresponsiveness that she’d rear back and punch him, hard – so hard that he’d sometimes lose consciousness.

Now, all ethics aside, here’s the interesting part. He grew so afraid of her physical abuse that, for self-preservation, he forced himself to be more engaged with the world. To be less autistic. That, he claims, is how he was cured of autism.

I have totally digressed, but it is such a sad yet interesting story that I had to share it. Now, on to the real point of this post.

A couple of weeks ago, Joseph and I got to his school a few minutes early. It’s standard procedure for kids who get to school early to go to the blacktop, but it makes Joseph nervous, unsure of what to do with the extra time. So I walked with him and we stood there until we could pick out his classmates, who were intently engaged in a game of basketball. Joseph kissed me goodbye and ran off toward his friends.

I hid myself and watched,  interested in how Joseph would interact socially. What I saw was very difficult for me, as the mama. Joseph stood to the side of the basketball players and sort of ran in the same direction as them. If they ran toward the net, he ran that way but over on the side, and if they ran another way he did the same, but over on the side.

Forget my boxing analogy: to me this was an analogy for Joseph’s life. Always on the sidelines, unable to quite get, or fit in with, what was going on. Always the odd man out.

I left the school with that image burning in my mind. I felt so sad. So weary. So afraid for my Joseph, who will end up friendless and alone. I wiped away a few tears, blew my nose and drove over to Jeff’s salon for a hair appointment.

As always, the hair cutting and highlighting activity were pleasantly augmented with lively conversation. At some point we were talking about Joseph and his autism, and Jeff stopped what he was doing to turn and look me full on in the face.

“That,” he said, “is God’s work in you.” I told him about the basketball visual, with my poor boy running around on the sidelines. “That,” he said, “is also God’s work in you.”

He also said he has never been able to figure out basketball. He simply can’t understand it. And later, when I spoke about it to John, our RDI consultant, he said that basketball is the most fast-moving, dynamic sport there is, so no wonder Joseph can’t get it. This all made me feel much better.

But the concept of God’s work in me has stuck. I mean, it’s an old cliche that all the bad things that happen are meant to sculpt us, polish us, etc. But to think of the autism, and the pain from it, as God’s work in me has me shifting analogies (again). There is God, right there in my heart, chipping away at the hard coats of shellac. If I didn’t have my wounds, I most certainly wouldn’t have the compassion to feel another’s pain. And, without your wounds, neither would you.

While my hair was full of foils, Jeff put on a CD he wanted me to hear. It’s called The Heart of Healing and I can’t recommend it highly enough. I lay on the couch and heard Marianne Williamson say this:

Dear God,
I face that which scares me. I am frightened by that which lies ahead.
And so, I place this situation, and all related circumstances, in your hands.
Take this burden from me. As I place it in your hands, I ask that my thoughts be transformed:
From fear to confidence.
From fear to courage.
From fear to faith.

At this point, I lost it. I cried about all the fear my mind had created from watching a simple basketball scene. I cried about the concept of being afraid and then trustingly placing it all into God’s hands. I cried about being able to ask for help in such a clear, open way.

I cried about this work that is being done in me. This painful, heartbreaking, magnificent work that God is doing in me.

Eventually Jeff stitched up my lip, wiped the blood away, massaged my shoulders and sent me back out into the ring. And here I stand, swinging, dodging, doing my fancy footwork and, let’s face it, going down on occasion.

But now I do it all with a prayer in my heart. A prayer where I admit my fear and then put it, and all related circumstances, into God’s hands. A prayer where I ask for transformation. With trust. With faith. I do this if I awake in the middle of the night. I do this whenever the flames of fear lick at my inner peace.

I do it. A lot.

Rumi says, The wound is the place where the Light enters you.

God’s work in us.

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

It’s the but-and difference.

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

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

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

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

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

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

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

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

Here’s my new point of view:

Joseph is a great kid. And he has autism.

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

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

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

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

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

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

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

Peaceful. Happy. Content.

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

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

I have a great kid, and he has autism.

Both. And.

I have just been through a dark time. I landed some painful physical karma and I let it get to me. Everything got dark and difficult — especially the fact that Joseph has autism.

Have you ever seen the different (humorous) religious¬† perspectives around Shit Happens? The Buddhists, for instance, say, “If shit happens, it isn’t really shit.” The Catholics say, “If shit happens, you deserve it.”¬† The Quakers say, “Let us not fight over this shit.”

And the Jews say, “Why does shit always happen to me?”

I am Jewish on my parents’ side, and that one nailed me during this last dance with the darkness. I held a big pity party about autism, and I was there in full attendance.

I also resisted. Sorry, Byron Katie, but I did not love life the way it was. I wanted it different! I wanted it neurotypical! I wanted to rewrite the whole dang script.

Hello, character flaws, there you are again. Will you be staying for dinner?

If it was just me going through the tailspin, it’d be bad enough. But Joseph is very connected with me and, when I nosedive, he nosedives. He gets more autistic-acting, triggering my resistance and self-pity, triggering his flapping and weird sleep patterns and brain fog, and on and on we go. The death spiral.

On the bright side, I did one thing differently: I told people that I was going through it. I cried about it to more than one friend and mentioned it to others. I was vulnerable. And you know what? People offered their help. They offered to look after Joseph. They listened. They prayed. They cared. I also got treatment for my physical ailment and that is improving. I took care of me a lot more quickly than I usually do. That feels good.

The great master Ramakrishna said, “Some of us laugh, Mother; some of us weep; some of us dance with Thy sweet joy.” To me that means there is a choice. I can walk with God in any old way I choose. Moment by moment, I do life with God — how do I choose to do it this day?

When it’s really bad, it appears that there isn’t a choice. But I know there is. There are the very rare examples of joyful, radiant people who lived in the concentration camps; of Tibetan Buddhist prisoners who feel that the worst thing possible would be to lose compassion for their torturers; of the Christian prisoner who, when her torturer said, “I am more powerful than your God because I can kill you!” responded with, “No, my God is more powerful because, as you torture me to death, I can love you.”

Blimey. What heroes these people are. What an example to the rest of us — and to me, who just spent more time than I care to admit in my lonely little pity party.

I conclude, therefore, with the Christian Scientists’ viewpoint:

Shit happening is all in your mind.

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.

Earlier this week, I picked Joseph up from school and we did the hour’s drive to the RDI consultant’s office. John had set up his neurotypical boys to interact with Joseph in a playgroup-like setting.

(Some kids get picked up from school and taken to soccer practice or music practice. In my mind, I refer to our after-school trips as “normal practice.” But I digress.)

We go into the office and the first thing John wants the kids to do is play a board game together. Now, Joseph is not a board game player. There is something about board games that he doesn’t get. So Joseph looks at the game and whines, “I don’t like board games. They’re too hard!”

It’s Chutes and Ladders, one of the easiest games in the world. I pull John aside and say,¬† “Joseph doesn’t do well with board games.” I’ve been cogitating on his answer ever since. He said:

“I don’t want this to be another thing that’s left out.”

When we have babies, a lot of things get left out: nights out, adult conversations, a full night’s sleep, sex — that sort of thing. But eventually things get more or less normalized and there isn’t such deprivation.

Not so with autism. Things get left out. Forever.

Recently some friends invited us to their ongoing couples’ group. They meet every other Thursday night. They bring the kids, set them up in another room with their homework and a video, and go do their thing separately. “Come along,” they said. “It’ll be great to have you.”

Sure. Take Joseph to an unfamiliar environment, set him up in a room with kids he doesn’t know, and leave him there to enjoy himself. Ha! Only in our dreams.

Another thing left out.

Blue Eyes is a builder. He works with a friend whose 3-year old boy recently threw a long tantrum because he couldn’t go to work with his dad to build with him. Blue Eyes thinks the time is near when they’ll have the kid come for a couple of hours to bang some nails and “help out.”

Blue Eyes has tried to interest Joseph in building, but Joseph feels incompetent and uncomfortable, and he shows no interest. It’s yet another place where Blue Eyes and Joseph don’t connect.

Another thing left out.

Recently we had extended family over. There were around fifteen people at our house. Joseph spent a large part of the time off by himself, telling me, “There are too many people here. It makes me nervous!”

It’s such a battle getting him comfortable in group settings that we’re considering not going to Thanksgiving gatherings any more. We’re not sure it’s worth the struggle.

Another thing left out.

The biggest thing that’s left out, in my view, is deep conversation. I want to talk with my kid about his place in our family history; I want to dialog with him about spirituality in all its nuances; I want to ask him questions about his inner life and get answers that mean something. I want him to ask me deep, interested questions. I want to teach Joseph some of the wisdom I’ve gleaned; I want him to teach me from his youthful understanding.

I want what conversations like these lead to: both parties coming up with a change in perspective, a deeper understanding of each other and the topic of discussion.  I want it, I want it, I want it.

Sigh. Another thing left out.

I know things can get better. We thought we might have to leave out living a normal life at all when Joseph was so terrified of dogs. Dogs are everywhere, and life was becoming one horrifying incident after another. But now dogs are a non-issue. So things can, and do, change. But they probably won’t change too much.

It is the way it is. I can’t fix it and I can’t change it. I am feeling sad about it. I am allowing that sorrow to fill my heart and I am sharing it with the Divine Mother, who knows all sorrows.

I recently heard a song that said God prefers the honest cry of a broken heart to a thousand hallelujahs.

Well, with the numbers of autistic children on the rise, God must be hearing some real honest cries from a lot of broken hearts.

God alone knows, but maybe that’s one of the reasons we’re given children with autism.

I woke up with a rib out of place last week. It hurt so badly that I could only put off visiting my chiropractor for one day.

Dr. Don and I talked while he worked on me. When he was done, he sat next to me and finished our conversation with, “Yoga Mother, you must remember that this earth is a pretty low plane of consciousness!”

So who lives happily ever after on a low plane of consciousness? This plane is a place to learn, to grow, to shed illusions; to do the work and the practice and to come once again to inner peace and love, connection and contentment.

This is my last post. I have been writing this blog for over a year now — or, more accurately put, this blog has been writing itself through me. It’s woken me up in the middle of the night to write itself. It’s brewed an entry slowly, for days, until the finished product spills through my fingers onto the keyboard. It’s insisted that I sit down, NOW, to say what it wants me to say.

And now it is giving me the strong sense that it’s done.

I am someone who prefers to keep my grief and challenges to myself, but this blog has demanded otherwise. In exposing my dark places to the light of your hearts, a transformation and healing has resulted. I know that you, too, have been touched and sometimes inspired by this blog, and I am grateful beyond words for that.

Thank you. It’s been an honor.

We had our kindergarten IEP (Individualized Education Plan) today. Joseph continues to have his challenges, but he also has his strengths. More importantly, perhaps, his teacher loves him already. She gets how sweet and kind and caring he is. She sees constant improvements. She wants him again next year.

Though this is not a happily ever after, it is a closure of sorts. We’ve made it this far and have a sense now of where we’re going.

This blog has allowed me to work through the grief of having big dreams die. My experiences have taught me that grief has its own rhythm. After all my kicking and screaming, I finally had to surrender to the ebbs and tides of grief, to its teachings and its power to shatter illusions.

And shatter illusions it did.

Now I feel healing happening. It is rather scary to let go of something that has become a very familiar friend, but it is, indeed, time to release the grief and move on. I can feel the Universe waiting for me to step up to the plate, to meet whatever it’s got planned for me next.

And so I say thank you. Whether you were one of my more vocal readers or a silent partner, your presence has made a difference.

I will, no doubt, begin another blog before too long. I can feel it shifting around, shuffling its feet, waiting for its turn — much like a babe in the womb. If you’d like me to notify you of its birth, you can send your email address to mrswrite@gmail.com. I promise to use your address only one time: for the birth announcement.

There is only one word I can see fit to close with: Namaste. In Sanskrit, namaste means the God in me bows to the God in you. And so it does.

Namaste.

Well, okay, maybe I’m not closing with that. With a title like the one on this entry, there is only one way to really finish this blog.

The

End.

Aum, shanti, peace, peace, peace.