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

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

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

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

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

Blessings.

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

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

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

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

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

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

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

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

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

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

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

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

Hello, little goat. Welcome home.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

So do not become discouraged and tired…

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

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

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

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

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

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

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

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

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

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

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

It helped. A lot.

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

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

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

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

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

 

 

Blue Eyes and I are fortunate in that we are surrounded by a loving community of friends. Many of us lived in an actual spiritual community together and left it at around the same time, settling in a nearby town and finding our way in the “real world.” As you can imagine, there is a deep bond between us all. We get together every week to meditate, and there are numerous times when we gather for other, more social, occasions.

Naturally, when Joseph joined our lives we dreamed he’d be a part of this community. He’d have so many aunts and uncles, so many people who would love him, care about him, and be in relationship with him.

Then came autism.

At the end of our meditation last week, a longtime friend named Carla shared a story with the group. She’d been sitting in a local cafe when all of a sudden a sweet, blond-haired boy jumped into her lap, smiling up at her. Then his sister walked up and very politely introduced her to her friend, telling her that Carla was her “second godmother.” Carla shared about what a precious moment that was, as these are kids from another couple in our group, and she so appreciates having this close, loving relationship with the kids.

Everyone, of course, was delighted with the story, and there was laughter and love around it.

But I could not laugh. I felt the punch in the gut that I get every now and then, the surprise OOOMPH that lands out of nowhere, causing me to double up in pain as the tears spring to my eyes.

I made my way quietly to the door, sat outside and cried.

crowdAutistic kids are often afraid of people. Mine is. A frequent public humiliation is being somewhere, anywhere, with Joseph, when we encounter other people. “HELP, MOM!” Joseph will call out loudly. “It’s people! I’M SCARED OF PEOPLE!”

It’s hard. It’s just bloody hard.

Which brings us to aparigraha. A Sanskrit word, aparigraha means non-envy. It is about avoiding greed-based desire that is rooted in jealousy: the desire to be what someone else is, to be where they are in life, or to have what they have. Aparigraha is about looking at someone else and not saying, “I want that.”

But I do want it. I want my son to be an integral, beloved part of my community. I want it for me and I want it for him.

I don’t have it. And I’m sad about that.

Life goes on, and so will I. But in the meantime here I sit, grieving, letting go of yet another dream.

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.

Never really meant to be so distant
Should have known that it made no difference
You were holding my hand when I walked away.
You were there in the middle of the night
You were there when I lost my sight
You’re still holding me today.
~ Shawn McDonald

Ever heard of the Black Willies? It’s where you wake up in the night and all the “bad stuff” is amplified: Fears, loneliness, unresolved conflicts, etc. The insomnia I experience started with Joseph’s birth, got even more intense after the autism diagnosis, and is still with me today. The Black Willies: Nine years and counting.

2013 was monumental because, in December, I had whittled down to mere crumbs of sleep meds. Then I gave them up entirely. My sleep actually improved for a while, but now the insomnia’s back with a vengeance.

While it was improving, I gave credit to the fact that I was no longer running from the Black Willies. In fact, if they woke me up, I wouldn’t try to write or read or meditate them away. I would sit, quiet myself, and look at the feelings around the Willies. I’d welcome them, meet them, allow them to be there, and then look at the even deeper feelings underneath those ones. In this way, I became aware of multitudes of fear that I hold, that I’ve been running from.

Part of me felt healed from being seen like this, and the sleep got better because of it. But over the past few days, I’ve had very little sleep.

Ok, my body is in some terrific pain, and that doesn’t help. But which comes first: fear and crazy thinking, or a painful body? Or do they feed upon each other, creating a snowball effect that’s hard to stop?

There’s an old yoga legend that says that, in the beginning, God decided to manifest him/herself in other forms. Among other creatures, God created human beings.

The first humans looked at themselves and said, “Hey! We’re not in the form of infinite love and awareness anymore, but it’s obviously who we really are. Screw this! — I’m going home.”

They sat down, meditated, and become One again with their source.

God watched all this happen. S/He said, “Hmmmm. I’m going to have to make this game a little harder.” S/He once again created the human form, this time adding Maya to the mix.

In Sanskrit, Maya literally means measure. It is that which separates, isolates, creates the appearance of difference.

So this time humans looked at themselves and said, “Hey! I’m a human being now. Think I’ll get busy finding out how human beings can make themselves happy.”

Thus the game, the lila, was created, and thus it continues today.

I think this is what the Black Willies are all about. When we feel separated, distant from our Source, there is fear. When we feel disconnected, there is disorientation, misunderstanding. Fear.

It is strange to me that I can have enough awareness to know I am not really separated from God, and yet be stuck in the Black Willies at the same time. Unable to get out.  Man. This maya is a complex thing. No wonder it’s sometimes called The Enemy.

I breathe. I remember the words from Shawn’s song:

You were there in the middle of the night
You were there when I lost my sight
You’re still holding me today

I want to feel God holding me. I desperately need to feel God holding me, and yet I don’t. I sit here, in the middle of the night, feeling alone, afraid, sad and worried.

I don’t mind these black times, really. I don’t mind being knocked to my knees because it’s a great place from which to pray.

And to write blog posts.

From the Black Lagoon, where the Black Willies play, it’s Yoga Mother signing off.

I could hear the sound of the whip as the man flogged them with all his might. When he left the room I sneaked in to see a pregnant woman, bound in a crouching position, losing consciousness from the whipping. I saw my husband, Blue Eyes, tied in the same crouching position, in shock to find himself like this.

As I left the room I ran straight into him: a huge, muscle-bound, ferociously angry man. Immediately he understood scary manwhat I’d seen and he decided to give me a similar fate. He was in a rage; I was absolutely terrified. Both emotions fueled us and, as he struggled to capture me, I fought back with everything I had.

It was my intention to knee him in the groin, disable him, and run out of the house to get help. But he was so big and strong that all I could manage was a weak punch in the groin, which stopped him for just a moment. As I turned and ran for the door, I knew my chances of escape — and life or death — were only 50-50.

Then I woke up, shaking.

I spent much of that night and the next day wondering what it could possibly mean. In my meditation the next evening I asked for understanding, and the following day it came in a flash.

The huge, strong, scary man was autism. So powerful. Such a force to be reckoned with.

The captive woman was me when I was pregnant: Bright with new beginnings, excited at the prospect of a baby, instead I was bound and flogged almost to death by autism. Blue Eyes, too.

Then there was the current-day me, still fighting autism with all I had, but scared to death that it was going to get the best of me. Outcome uncertain, to say the least.

I related this dream to a psychotherapist friend, who told me my interpretation seemed right on. “But,” he pointed out, “autism itself is not big and strong and scary and powerful. You give it all those qualities.””

“Also,” he added, “you need help.”

Ya think?

“Get therapy,” he told me.

“How do I find the right person?” I asked.

“Trust your intuition. It’s got to be the right chemistry,” he said.

Ok, I reasoned, if I was given that interpretation to the dream just the way the angels/guides seem most likely to communicate — inserting a flash of understanding — surely they can direct me to the right therapist. I found one who seemed a possibility to my rational mind but, if I had to be honest, I didn’t like the look of her in the ad. No chemistry there. So I continued to ask.

Today I had ten minutes free before I needed to pick up Joseph from school. I was in town so I thought I’d just pop into the local sports store.

Let me preface this next part by telling you I am a triple Capricorn. I almost never have ten minutes free time — I am usually very structured and have a list going of what to do with any of that rare free time that might show up. But this time I had nothing else to do.

As I walked into the store, I ran into two old friends, a married couple, walking out. They’d almost divorced and had clawed their way back into a good marriage again, so we were talking about that when they mentioned how amazing their therapist was.

Green light. Angels singing. Heavens opening and a Voice saying, “She is the one, Yoga Mother.”

I got the info on the therapist.

As the three of us left the store together, I checked my watch. That most informative encounter had taken exactly ten minutes.

I’m feeling hopeful. Guided. I used to be afraid of intuition because I thought my ego might get too blown up if I was good at accessing it. Now I realize it’s nothing to do with me in an egoistic way. It’s how well I can listen, how open I can be, to being told what to do by those who have a much bigger perspective than me.

It’s time to shrink that huge, scary, powerful autism image into something much more reasonable.

Maybe, with help, I’ll even be able to sleep through the night again. After all, it’s only been nine years.

Which, not coincidentally, is exactly how long I’ve been grappling with autism.

Relax — this is not a post espousing Christine doctrines; Yoga Mother is not the type to do that. This is about a more personal kind of crucifixion.

This past weekend was  a very interesting one for our family. We rent out the small cottage on our property as a vacation rental. Usually people come, enjoy whatever they’re here for, and go. Sometimes we meet them and exchange a few words; often we don’t.

This time it was completely different. A man named Eban got lost finding our place, gave up, and then crashed his car heading somewhere else. Blue Eyes picked him up to bring him here and, from that moment on, he was part of our lives. A man in his late sixties, he needed to be driven here and there; he needed emotional support dealing with the car; he came over for meals.

During all this, we talked. He is a psychotherapist and had some really valuable things to say about the autism in our lives.

crucifixion-altarpiece-detail.jpg!BlogIt is a crucifixion, he said: The ego is getting crucified. What is the ego? I’ve heard it defined as the part of us that says, “Yeah, but.”

Yeah, but I didn’t sign up for autism.
Yeah, but everyone else has it so much easier.
Yeah, but I don’t WANT it to be this way.
Yeah, but…(What’s yours?)

Terese and I took our boys to the playground yesterday. Her autistic son scared a little boy by going down the slide right after him, basically pushing him down. His mom rushed over, picked up her son to hug and comfort him, and then took her kids to the lower playground to get away from us. Eventually we went there too, and again Terese’s boy disturbed the younger one. The mom threw Teresa a really dirty look, gathered her kids, and left.

And so another nail got hammered through Terese’s hand. Another sword punctured her side.

Yeah, but I’m a good mother. It’s not my fault my kid acts like that. Why are people so judgmental?

Eban says that it’s all about vulnerability. Look at Jesus, he said: A great master with all the powers in the world, he nonetheless made himself completely vulnerable.

“Yeah, but look where that got him,” I answered (notice my yeah, but).

“Ah, and look what happened after that!” he responded.

The resurrection.

It hurts, this thing called autism. This man who magically appeared in our lives says to let it hurt; to be vulnerable enough to open to the pain. In this way, he says, we can be molded. In the suffering, he says, there is grace. Find the grace.

I don’t claim that autism has the monopoly on crucifixions. Most of us have the so-called grace of something that crucifies our egos! Mine happens to be autism.

And so I wish us vulnerability. I wish us trust that God loves us so much, and knows us so dearly, that S/He gave us our particular crucifixion. I wish us freedom from false identifications (another definition of the ego: The soul identified with the body/mind) so that we resurrect in our full glory as unlimited beings, as children of the light. May we truly know that we are spiritual beings having a human experience.

May we open in surrender.

Into Thy hands, oh Lord, do I commend my spirit.

We deal with anxiety over here.

I might step outside ten feet to put things into recycling bins. Joseph, upstairs, will hear the door open. He’ll call out,

“Mom?”

“Mom???”

“MOM!!!! YOU’VE LEFT ME!!!!” (This last one is to be read in a panic-stricken, terrified voice.)

How many times has this scenario repeated itself? Hundreds. Maybe thousands.

Sometimes it happens if Joseph is downstairs and I go upstairs. Then it changes its tune just a little:

“Mom?”

“Mom???”

“MOM!!!! I MISS YOU!!!!!!” (This one also to be read in a panic-stricken, terrified voice.)

Recently we took a little vacation to Southern California. We stopped at a hotel halfway down that first night. Joseph slept in a rollaway cot right next to Blue Eye’s and my bed. He woke up at 4am and never went back to sleep.

Why? He was afraid we were going to leave without him.

From that night on, he had to sleep with Blue Eyes, staying in contact with some part of his body through the night so that he could be sure he wasn’t going to be abandoned. We were house sitting. They slept in the master bedroom. I took the 14 y.o.’s room. How romantic!

On the bright side, he does sleep alone, in his own room, when we’re not on vacation.

Blue Eyes and I have been on the path of yoga for decades, so naturally we’ve coached Joseph on taking deep breaths and simply observing the mind when it says things that aren’t true. And it’s helped — but just a little.

We’ve worked some with herbs and homeopathy. I approached one of my best friends, a senior teacher at an ayurvedic college, about the anxiety situation. She confessed that she was going through a similar thing with her neurotypical son, and that she hadn’t been able to help him, either.

IMG_1109Anxiety in the extreme is crippling! I have a friend whose husband can’t work, who has trouble leaving the house, due to his. I see how it stops Joseph in so many ways, and I wonder: What kind of a person could he be without it? I would so love to see him strong and confident, stepping out in his full potential.

We know there are drugs that treat anxiety. They sit on the back shelf of our minds. Sometimes we take them down, turn them over wonderingly, and put them back. It feels like a big decision. I’ve struggled for years with the need for sleeping pills, and I would hate to create a dependency on drugs when there didn’t need to be one.

But when do you say, We’ve tried hard enough; now it’s time to try drugs. Or do you?

I think it comes down to this: Right now the anxiety is somewhat manageable, somewhat influence-able. If or when it gets too strong in the other direction, we will look seriously at medication.

I would be very interested to hear from any of you on this topic. Do you struggle with anxiety in your child/ren, and, if so, how do you deal with it?

Thanks.

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.

Blue Eyes and I went out to see The Hobbit the other night. I wish I’d done some research on it beforehand, but I thought I could trust a movie that had been made from a delightful, magical children’s story.

Sigh. To say it was violent is like saying autism is a pain. A major understatement!

THE-HOBBIT-AN-UNEXPECTED-JOURNEY-PosterFrank Schaeffer from The Huffington Post, in his review of  The Hobbit, says that there were levels of “carnage, violence and needless clutter ‘noise’ in the form of extravagant needlessly complicated action (in) almost every scene.”

Sure wish I’d read that review before deciding to go.

The non-stop carnage and violence got to me. Big time. I felt sick and anxious. My heart was going a mile a minute. But, I thought, I’m a big person. I can make wise choices. So halfway through the movie, I told Blue Eyes I was going to go find a happy movie and that I’d find him when it was over.

The theater had two other movies playing. I stood outside one and listened: screaming, pounding, guns firing. Nope, not that one. I stood outside the other: dialog, laughter, sweet music. Maybe I’d found my movie.

I made my way to a seat and watched Django Unchained. This movie mixed in sweet southern scenes with horrid, violent excess.  I held my breath and shut my eyes while the dogs ripped apart the slave. Then we were back to southern sweetness and hospitality, and I relaxed. The unexpected bloody gun scene made my muscles rigid with tension. In a few seconds my fear drove me from my chair and out the door.

I was literally shaking.

I was also stuck. It was 37 degrees outside, so I couldn’t go sit in the car and wait for Blue Eyes. The ushers were hanging out in the lobby, talking and laughing, and I didn’t want to spoil their fun. I looked at my watch: 15 minutes left of the Hobbit. They must be calming down and resolving the movie at this point, I reasoned; I’d go back in and enjoy it.

In I go, 3D glasses propped over mine. Creatures attack the dwarves and the hobbit. The lovely dwarf king is brutally beaten. Crazy things pop out of the film at me. I turn to Blue Eyes and whisper, “I can’t stand it anymore. Can we leave?” “It’s almost done,” he says. In our parallel universes, Blue Eyes can separate fact from fiction, whereas I am unbearably stuck in the violence.

Even in my traumatized state, I flashback to Joseph turning to me in the middle of a movie and asking, “Can we leave?” What a pain that was. Yet now I was taking a walk in his moccasins.

I sob quietly, and tremble until the fighting is over. Finally the movie ends. People applaud happily; what a great movie.

On the way home I sit, shaken and sombre. I think about how trapped I felt. All the violence and noise and excess flying around me, and I couldn’t escape it. I couldn’t stop it from affecting me. It was like the horror reached into me and did with me what it wanted, and I had no choice in the matter. Was I the only one who felt this way? If so, why was that?

I can count on the fingers of one hand the number of times I’ve gotten Joseph to a movie. He is so sensitive that the blaring surround-sound is difficult for him. If anything happens that is remotely bad or violent, he feels it deeply. We watched a video the other night and he burst into tears when they gave a dolphin a tranquilizer shot. He cried in his class when they watched a G-rated movie where the dogcatcher caught a dog in his net.

I used to silently mock Joseph for his movie sensitivity, but no more.

I tell Blue Eyes two things: 1) I will, henceforth from this moment, be much more careful about the movies I see, and 2) I will be much kinder to Joseph regarding his sensitivity to movies. Whereas many people can stand, and even enjoy, more than I can in movies, I can stand, and enjoy, more than Joseph. This does not make him wrong or bad or stupid. It is to be respected.

Once, at an autism support group, Blue Eyes and I made a joke about Joseph’s sensitivity. We told them that, when he was naughty, we threatened to take him to the movies. Everyone laughed.

They understood because their children, too, were ultra-sensitive.

But I wonder, how normal is it to enjoy the violence and horror of the movies I watched? For that matter, how normal is it to be unaffected when a dolphin gets a shot or a dog is captured? When is sensitive too sensitive, and when is it right to feel for another’s suffering?

Today’s normal is a far cry from the normal of 50 years ago. It is also far from humane. The normalizing of violence simply must play a part in the mass shootings that have been taking place way too often. I think that, on the spectrum of sensitivity, I’d much rather be on my son’s side than on the other.

There is so much in life we’re not normally sensitive about: Angels among us, intuitive guidance, souls we’ve known before, the presence of God. Whether it’s movies, spirituality or anything else, perhaps we’re meant to cultivate our  sensitivity rather than to try to lessen someone else’s.We’d be watching different movies, and it’d be a pretty different world if we did, wouldn’t it?

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.

Sleep has been a real bear lately. Even the drugs that I’ve resorted to haven’t done the trick. So I’m doing the thing I’ve resisted, avoided, neglected, and otherwise tried hard not to do:

I’m looking at my subconscious.

Earlier this week, I pulled a daily affirmation card that said this:

Today, I will identify a situation that binds me to the past and offer it at the feet of the Divine.

Immediately I thought of how Joseph didn’t sleep his first four years, and neither did I, and how incredibly traumatic that was for me. I still have a hard time being close to Joseph at night. It’s hard to sleep in the RV together on camping trips, for instance. And I struggle with intense insomnia almost every night. I have soooo not gotten over this trauma.

I spent that day giving it up to God, over and over again. And that night I had a dream:

A woman got thrown into the back of a garbage truck. At first she thought it was funny, but she soon realized that she was stuck in the garbage and that, no matter how she yelled or banged on the sides, no one could hear her. She realized she was going to die, smothered in all that horrible garbage, unheard and unseen. At one point there was a window and I could see her looking out. Her face was filled with despair and terror, tears running down her cheeks. It was terrible.

The night after that I dreamed that I lived in this horribly hostile world and there was a man stalking me, wanting to rape me. Last night I was at a store and, when I went out, found that wildfire was consuming everything around me. Smoke was everywhere; I couldn’t see and I couldn’t breathe.

Get the feeling I have some work to do?

A dear friend suggested I write for a minimum of 15 minutes before going to bed. I could write anything or everything, but I had to let my subconscious speak. I did this for the first time last night, and I could feel that terrified subconscious sigh a little exhale. I think I’m on the right track.

From a soul perspective, I realize how profoundly Joseph’s autism isn’t just for his growth and expansion; it’s also very much for mine. On Friday mornings some parents gather at Joseph’s school to have coffee and tea. This morning, a few of us got into a discussion about improving the quality of the school lunches. I am waaaay into this, and I said so. They asked me if I could come to a PTA meeting, where we could discuss it with the Principal.

For two years I have wanted to go to the PTA meetings, but they take place right after school and I haven’t known what to do with Joseph. Your typical child could come along and play with other kids quietly in the back, but Joseph is not your typical child. He would need my constant attention — he would be nervous and possibly freaked out. In other words, it wouldn’t work.

These three women are looking at me, waiting for an answer. Perhaps due to this subconscious work, I chose to expose my soft underbelly — my big, shameful secret. I said, “Do you guys know Joseph has autism? It just wouldn’t work to bring him along.”

They all nodded — yes, they knew. I felt the energy change around us — growing, expanding, as our hearts opened more fully to each other. Jenny offered to have her mother, who is experienced with special needs, stay with Joseph so I could attend. And thus my attendance problem was solved.

As I walked toward my car, I could feel my heart happily melting. It was not my big, terrible secret, after all. It was the elephant in the room. The whole darn school must know. If I saw a kid walking toward school flapping his hands, I would know. What the hell have I been thinking these past couple of years? More swimming in that river DeNile, I guess.

Oh, the joy of speaking one’s secrets. Oh, the beauty of making oneself vulnerable. The moment I did, they reached out to help. I am learning so very much.

I am watching and listening more closely now to my dreams and my subconscious. My hope, and my prayer, is that things start to turn around for this woman in the garbage truck, the hostile world, the raging fire. May she start to feel more safe. May she be heard when she asks for help. May she realize that support is right there, just waiting — chomping at the bit, even — to be invited in.

A couple of months ago, I locked myself in the bathroom and sobbed. Something momentously, earth-shatteringly terrible had happened, and all I could do was cry and cry.

Um, from two months past the event, I confess that I can’t remember what I was crying about. It was something Joseph had done, of that I’m sure.

So there I am in the bathroom, hysterical with tears, when Joseph comes to the door. “Let me in, Mom!” he pleads. Angry and upset, I refuse and go back to my crying. He is persistent though, and finally, thinking that maybe he’ll be repentant or at least supportive, I unlock the door.

He looks at me, with my red face and waterfall of tears running down my cheeks.

And he smiles.

This is an ongoing thing, where Joseph smiles when others are upset or hurt. It has gotten him in trouble with other kids since he was in preschool. He knows it’s not the right thing to do, but it seems he can’t help it. It’s hard for him to act “normal” when others cry.

In the book Look Me in the Eye the author, who has Aspergers, describes what this phenomenon is for him. He’ll hear about some horrible accident and then he’ll think about how grateful he is that it didn’t happen to the people he loves the most. He’ll smile thinking about those people, and that’s when he gets in big trouble for smiling when someone is relaying tragic news.

A friend of mine has an adult daughter with autism. Her daughter will stick her foot out in an aisle, make someone trip, and smile.

I don’t know exactly what happens for Joseph to make him smile. I do know that, when I was in his classroom this year and a kid got upset about something, he turned first to Joseph and snarled, “Don’t LOOK at me!”

In that bathroom incident, I knew just how this kid felt. When Joseph smiled, I got mad. Furious. I yelled at him for smiling,  pushed him out of the bathroom with much force, and re-locked the door. Then I had even more to cry about.

A while later, when I finally emerged, Joseph was nowhere in sight. I finally found him in another bathroom, sobbing, with the door locked.

Blue Eyes brought about a truce, and Joseph and I headed off to his school, sober and spent.

I felt bad about manhandling Joseph so roughly, but Blue Eyes was reassuring. Sometimes Joseph needs a point brought home very strongly, he said. Let’s see if this incident registers and helps him to respond in a way considered more normal.

I’ve been having a rough time with my feet lately. They’ve been painful and, sometimes, difficult to walk on. Earlier this week, I was rushing up the stairs to get Joseph out the door for school, when I slammed my big toe into the stair rail.

The world stopped and I sobbed with the pain. Joseph came down to me, looked at me seriously and said, “What happened, Mom?” Through my tears I told him and then asked for a hug. He gave me one. Then he said, “I didn’t smile, Mom!”

I was really proud of him. I said so then and brought it up again later, in order to spotlight what a great thing he’d done.

It’s a small thing, but it’s a big small thing because of its effect on other people. I hope that this lesson stays with Joseph, as it’s a lot easier to get along with “normal” people if you can act that way too.

What it’s taught me is that it’s important to make a stink about things that are inappropriate — a big stink, so that Joseph really gets it. When he blew his nose into the throw rug recently, Blue Eyes and I got very verbally grossed out. I don’t think he’ll do that one again.

These are the kinds of things we work on in our house, where life can get a little surreal. Not quite normal, but not so far off, either. Next to normal. That’s where we reside.

Our RDI Consultant taught Joseph how to use a bow and arrow today. As Joseph held the bow and pulled back the string, he felt the tension in it and said, “OWWW!”

John asked, “Did it hurt?” and Joseph answered, “No. I was scared.”

This engendered a conversation between them about how you say Ow! when something hurts and how you do something else, like inhale audibly, when you’re scared.

These are the kinds of things you talk about when your kid has some wires crossed in his mind. John calls it disorganization — which, when you think about it, means you’ve got things in the wrong place and it feels chaotic. A pretty good description for what happens inside Joseph’s mind at times.

For years I’ve tried to distinguish for Joseph the difference between hearing something and seeing something. The other day he said he’d heard thunder and seen lightning, and I thought, “Eureka! It’s finally connecting!”

So nice when, after much effort over time trying to flip the switch, the light finally shines.

There’s still much to work on in terms of getting disorganization organized. For instance, Joseph might call from downstairs for Blue Eyes, asking where he is. Blue Eyes will answer and his voice will clearly be coming from up the stairs, but it’s not clear to Joseph. He’ll turn around and start looking in the wrong place.

Or I’ll have Joseph’s clean laundry on his bedroom floor, folded and ready to be put away. When I bug him to put his laundry away, he’ll take it and put it — sigh — in the hamper.

I see disorganization a lot when I watch Joseph in swim class. Take yesterday, for example. Joseph’s swim teacher gave the kids some instruction about how they were forming two teams with three kids on each one. She touched the heads of each kid as she said their names. “Mark, Joseph and Lita, you are team one. You swim to the other side and back, and then tag your team member two to go.”She chanted, “Ready, set, go!”

The other two kids swam off quickly. Joseph just stood there. He looked at the teacher, confused, and asked, “Am I on team one?

Anyone can miss things now and then, but this happens a lot with Joseph.

Disorganization. It must be really hard to have the wires crossed within one’s brain. I would feel like a stranger in a strange land if I couldn’t grasp concepts as quickly as others. Though not a neat freak, I really dislike it when my life is disorganized. I can’t imagine how frustrating it would be if my brain were that way, and there wasn’t a thing I could do to change it.

No wonder Joseph doesn’t hold conversations at length. He does try, and often times we have to unscramble a few things to make sense of what he’s saying. He said something almost backwards the other day, and our respite worker, with infinite kindness, restated it correctly for him. This is the value of having experienced people around him — people who understand the problem and who work with it with patience and care.

What I hope and pray for is that Joseph gets this: A processing disorder is not the same as being slow or stupid. In the future, I want him neither to accept others’ abuse of him for this nor for him to abuse himself.

At least the brain experts have changed their mind about when the brain stops developing. Whereas they used to think that nothing much changed after childhood, they’ve decided that one’s brain can continue improving throughout its existence. Very kind of them to have proven such a thing as Joseph turns 8.

We’ll continue to sort through the disorganization as best we can. Grateful for the respite support we get, because it can be exhausting trying to help a disorganized kid act like the majority of relatively organized humans on this planet.

It was ominous from the start.

Blue Eyes and I walked in to the IEP and there, placed prominently on the table, was a box of Kleenex.

Hmmmm, I thought. This might be bad.

In a few short minutes everyone gathered round: special ed teacher, school psychologist, speech teacher, classroom teachers, aide, principal. We started with intros and some preliminary stuff, and then the psychologist took the reins.

Dr. C gave a long talk about how many kids with autism don’t do well on standardized tests. He said that the instruments he is given to measure a person’s intelligence fall far behind what an autistic person’s intelligence may truly be. He talked about how Joseph was distracted during the testing; he didn’t like being pulled out of class; he appeared to guess at answers just to get the tests over with.

Then Dr. C opened up the paperwork and showed us what Joseph had (and, mostly, hadn’t) done. He showed us how his test results compared to average results.

Eventually he came to the point: Joseph’s IQ score was less than 70.

This, my friends, qualifies him as mentally retarded.

Now, Joseph is absolutely, positively not mentally retarded. He is, in fact, a rather bright boy who processes things more slowly than most, and who doesn’t much care about giving right answers on a test.

Neither Blue Eyes nor I reached for the Kleenex that day. Everyone in the room agreed that the test results were ridiculous, and the psychologist attached a letter saying he believed the results were invalid.

And yet.

It will be a part of his record forevermore. It is one more label that we don’t need, and don’t even deserve. I am starting to get angry about it.

I brought it up to John, our RDI Consultant, and loved his comments. Did Dr. C check to see if Joseph was ready to take the tests? Did he check for Joseph’s availability? The answer to both these questions was no. Joseph was clearly resistant to leaving his classmates; he did NOT want to take the tests. He wasn’t ready and he wasn’t available.

Dr. C recommended that we never get Joseph’s IQ re-tested. He’ll never do well on these types of tests, he said. And having such a low score will guarantee us government-funded services forever!

(If Joseph continues to do well in school and with self-care, he could eventually disqualify himself from services, you see. But not with this IQ score!)

The thing is, I don’t want government-funded services forever. I want Joseph to be an independent adult, able to hold down a job and have relationships. Able to have a rich, multi-dimensional life.

I appreciate that Dr. C was looking out for us, but I don’t share his outlook. Obviously we don’t know what Joseph’s future will be. It could go either way. But if I see him as a full-fledged, self-reliant adult, I think his chances of getting there are much better.

I am mad about a system that measures our children — defines their intelligence — in such a narrow way. I am blown away by a system that monetarily rewards those who are unable to function independently but does not help those who could be self-reliant.

Mentally retarded?

Oh, okay, hand me that damn Kleenex box.

When your child is nailed as a special needs kid, the school system gives him or her an Individualized Education Plan, or IEP. Once a year the parents get together with the teachers, the principal, and any and all therapists, psychologists, etc who have been working with your child. And you talk. How the kid’s doing at school, how s/he’s functioning on the playground, socially, etc. Everyone gives a report.

Here I sit, an hour and twenty minutes away from Joseph’s IEP, and I’ve got the jitters. They did a comprehensive testing this year, even hiring an outside psychologist to evaluate my son. Gasp. I’m sure glad they don’t examine me like this every year!

This school year I’ve helped out in Joseph’s classroom every two weeks, and it’s been an eye opener to see him in action. Last Thursday, for instance, he was out for testing with the Special Ed teacher. When he came back, he was supposed to join some of the other kids over at the kindergarten to help a kid read.  His teacher, Mrs. Crosby, explained this to him and said she’d watch out the window as he went.

But Joseph wasn’t having any of that. He stopped, rubbed his face, and looked dismayed. “It’s — it’s — it’s too much,” he said, anxiety creeping into his voice.

Mrs. Crosby couldn’t leave, as she had other kids in the class. The aide was already at the kindergarten. Naturally, I volunteered to walk him over, and I did.

I just didn’t know he’d need help walking from one building to the next.

It was a 30-second walk.

These are the kinds of things I’ve learned from being in the classroom one morning every two weeks.

I’ve learned that Joseph really does needs his aide. Not all the time, but when he needs her, he needs her. It’s hard for him to pay full attention to everything he’s supposed to pay attention to. He needs more movement than many of the other kids. The aide keeps him focused and also has him get up from his seat to go to a quiet corner of the room for something like reading. He gets to use the white board for stuff sometimes. Just that little bit of moving around and standing to write helps him out.

We are incredibly fortunate to be in such a supportive school. They make it work for Joseph. He’s doing well academically — not brilliantly, but well enough. I know that school will get harder as the years go by, and I hope and pray that Joseph can keep up — not only academically, but socially, as well.

I guess that’s what the jitters are about. Are they going to tell me that my kid — my beloved, amazing child — has problems I’m unaware of? Are they going to take his aide away for next year? Are they going to see him as a “case,” with data and facts, while I see him with a mother’s loving heart? Am I going to cry in front of them? It’s such a vulnerable position for a parent.

Well, time to breathe myself back into the moment. Time to quiet my mind, open my heart, and claim my trust in God.

Oh, yeah. Breath. Trust. Quiet.

Steady, girl. Here we go.

Joseph came home from school today and marched right upstairs to his room. “Do NOT come into my room, Mom!” he instructed me — several times over the next hour. I could hear him in there playing with his trains, which we hadn’t gotten around to putting away Sunday evening. Toy trains, being something of an obsession, are usually restricted items, so naturally it was exciting to Joseph to enjoy some forbidden fruit.

When an autistic child tells you to leave them alone, it can produce a perplexing amount of emotions. I went back to the educators who came to our house for a first look at Joseph at age two, when we initially suspected autism. When they left, they instructed us to stay in his face — to not allow him to retreat into his own world. No private time, they told us. And I remembered how Temple Grandin’s mother would let her stim (in this case, I believe it was flap her hands) for only half an hour after school before hauling her out and putting her to work, learning and interacting.

I am an introvert. How I prize my alone time, my quiet time. If I don’t get it for a while, I have a melt-down; I really do. I believe that Joseph has at least the same need  for space — if not more.

This was one of those times when I wanted the manual. You know the one: It’s entitled How to Work with your Autistic Child for Their Maximum Benefit.

Joseph’s gone in and out of train obsession since he was two. It used to freak me out, as it was all he’d think about, talk about, watch on video, and play with. That’s why we ended up restricting toy train time.

This time it’s slightly different. Though he’s thinking about trains and talking about them a lot, he’s engaged in other parts of life, as well. He’s goofing around with our dog and he’s wanting to go swimming and he’s excited about an upcoming vacation.

Still, trains rule all as his Number One Love.

We have a friend, a guy in his 50s, who loves trains like that. He had an extra room built on his house which he filled with model train tracks and trains. On weekends his buddies come over and they run trains together. He goes to train shows and train exhibits. His wife comes along sometimes; she thinks it’s funny.

Joseph will be like this man. There is just something about trains that he adores. It will be a lifelong passion. It’s not the way I choose to spend my life,  but it is his life, not mine. I can live with that.

Joseph is not figure-outable right now. In some ways he seems to be regressing: train obsession, more jerky movements than usual, more flapping. In other ways he seems to be progressing: finally enjoying board games, understanding his math, conversing a little better. Maybe this is a healing regression. Maybe not. I’m tired of trying to figure it out.

I don’t have the manual, so I think I’ll just release it and leave God’s business to God.

I’m even going to give myself some slack for not hauling Joseph out of his room and making him interact with me this afternoon. Sometimes you’ve got to put aside the (imagined) manual and go with your gut. My gut said, leave him be — though I did have him put away the trains this evening.

When you have a kid with autism, you can drive yourself crazy really easily. I never should have taken him to that noisy concert when he was a baby; I should have had him diagnosed earlier; I shouldn’t have done vaccinations; I should never let him have too much alone time.

But there is no manual, and much of Joseph’s, and perhaps anyone’s, autism is simply not figure-outable. Because of this, I try hard not to should on myself. Part of the divine perfection of this journey is that I’m learning to release things more easily rather than to flog myself with them repeatedly.

All this to say, Joseph and I had a lovely, quiet afternoon. We came together at times but also spent a lot of time apart doing our own thing.

And God said, It was good.

Or, at the very least, I did.

🙂

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.