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Two weeks ago, a dear friend took his life. As soon as we heard, in shock and grief, Blue Eyes and I made emergency arrangements for Joseph and headed to his house. As we got out of the car his wife hugged us and said, “They are just taking Ian away. Say goodbye to him while you can.”

The coroner, who was helping to carry him out in a stretcher, unwrapped his face. Blood spattered and frozen, it didn’t look like Ian. Ian, the ever-smiling, ever-caring, silently serviceful man, was not in that body. The Best Man at our wedding 24 years ago, the deep friend and brother in God, this was no longer present in that body.

Most of our meditation group gathered there. Hugs, love and tears were exchanged freely. Oh, Ian. How we miss you.

Do we not know what an impact we make on others in our simple lives? Ian and his wife were so kind to Joseph. Healers come in all kinds of packages, and Ian, by his humble example of love and care, was a healer. He was an important male role model in my son’s life — and now he has removed his physical presence from our lives. The reason will always be a mystery.

In sharing with our group a few days later, his wife brought up how small talk was so hard for Ian. He found eye contact hard. He didn’t know how to start discussing inconsequential things and let the conversation move around to things of more substance. His wife said that this brought up a lot of anxiety for him — how he wished he could be “enough.”

I knew Ian had social anxiety and that he couldn’t easily meet my eyes. A long time ago I had silently diagnosed him as on the spectrum. Way up on the spectrum, but still on it. Yet he was famous for his huge smile, so friendly and sweet. I never, ever would have tagged him as a potential suicide.

Held a pistol to his heart and pulled the trigger. A nice, neat hole that took him instantly. And such symbolism. A broken heart. No more heart for this life.

We didn’t, couldn’t, tell Joseph how it happened. We told him Ian’s heart stopped, but Joseph guessed that Ian took pills to make that happen and we didn’t contradict him. I wonder if many suicides are from people on the spectrum. The only other suicide I’ve had close to me was a teenage neighbor, and, looking back, I remember that he couldn’t make eye contact and that he walked funny — on his toes. Sigh.

A surreal twist to the whole situation was that Ellen, a medium from England, was visiting our friends. She comes twice a year to the US and conducts readings with loved ones from the other side. So as we grieved on that day two weeks ago, she would quietly point and say, “He’s standing right in front of that tree. He keeps saying, ‘I’m free! I’m free!'”. She said he took his life because he felt like he didn’t belong. All these years trying to fit in, and he just didn’t belong. He was so confused, she said.

As a spiritual being having a human experience, I too have often felt like an alien in this life. This is a common feeling for those of us who identify with our spiritual side more than the human one.  But to feel that one also just can’t fit in with other humans — that must be hard. To stand quietly while others talk because you can’t think of what to say. To feel things deeply and not be able to express them. To be unable to engage or outwardly connect with people who you know and love. Ugh.

I pray for my Joseph, and for all our spectrum kids. May they make their way in this crazy world. May they find connection and authenticity. And, when it’s not working, may they seek help. As Ian’s sister said at his memorial service:

I wish you had not been so heroic with your burdens;
I would have carried more, much more and gladly.
It would have been an honor.
So I spit on stoicism today;
That chill perjurer who poses as a virtue.

Someone once told me that Satan loves it when we don’t ask for help. And I remember, at an OA meeting, the leader said that if you share your pain, you leave it there; but if you leave it unsaid, you take it with you.

May we have such a good relationship with our ASD kids, and all our kids, that they can share the good, the bad, and the agonizing. May we, as parents, have the ability to empathize, to hear and feel their pain, and not try to gloss it over or make it all better when it’s not. May our children feel heard. And loved. And worthwhile enough to choose life when facing the darkness.

Om. Peace. Amen.

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Reject your sense of injury, and the injury itself disappears. ― Marcus Aurelius

Last Saturday I went to San Francisco because my best childhood friend was going to be there. It’d been fourteen years since I’d seen her, and I loved every minute of our time together.

Tamara said something that’s stuck with me. She’d read an article that pointed out how, here in western civilization, we expect life to be good, smooth, easy. Thus we are disappointed and upset when something goes badly or not as planned. What if, the article suggested, we adopted the more eastern view that, essentially, life is full of struggle and suffering? Then we could be pleasantly surprised about the good things that happen, rather than bitter and distressed about the bad.

(I was pleased to find that the girl who was my best friend at the tender age of six was probably a wise soul, given that, forty-some years later, she was pondering this sort of thing.)

So your kid gets a diagnosis of autism. Instead of plunging into despair, denial and depression, you think: “Of course. This fits nicely into the struggle that is life.”  And on you go.

My friend, Jaquelyn, loves her pottery class. The running theme in her class is wabi-sabi, a Japanese phrase meaning flawed perfection. Jaquie might be forming a bowl when, at some point, she finds a crack or an inconsistency somewhere. “That’s the wabi-sabi,” she’ll say. The class agrees that the flaw only adds to the beauty of each creation.

And so it is with Joseph. When it gets difficult, I am now more accepting that it’s supposed to be. The challenges Joseph presents fit perfectly into the struggle of life. Joseph and his autism are wabi-sabi: imperfect, impermanent, and incomplete. Just like the rest of us. How beautiful.

pepsi generationThis is in direct opposition to the American “It’s all good” attitude.  I blame the media for a lot of this expectation of perfection. Like the Pepsi Generation: those young, beautiful, on-top-of-the-world  people who have not only Pepsi, but everything else they’ll ever need in life. No wabi-sabi there!

Of course, one in four Americans is on anti-depressants, trying to find their own personal Pepsi Generation. Lotsa luck, guys!

Expecting life to be difficult doesn’t mean I’ve turned into Eeyore. Rather than moping about,  I find myself much happier with lowered expectations.

Rabih Alameddine says, “…What happens is of little significance compared with the stories we tell ourselves about what happens. Events matter little; only stories of events affect us.”

Want to be happier? Listen to the stories your mind tells you about how it “should” be, and see what happens when you change the stories.

Blessings!

 

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

Recently I came across a piece of writing I’d done in 2008, which I’d entitled A Dark Time. From this vantage point, I can see that I was severely depressed when I wrote it, and I warn you: it’s not pretty. It’s my Secret Demon Thoughts and I never thought I’d share them, but something compels me to do so. Perhaps it’s for those who are newly on this autism road, those who need to know they aren’t the first to be in despair.

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Something’s not right with Joseph, and it’s definitely not right with me. I am pretty well as low as I get. I am crying constantly. I have bags under my eyes. I can’t bring myself to exercise. Nights are an occasion for dread, and the only way I can deal with them is by drugging myself. This brings on a sleep that isn’t really a sleep, so I wake up already tired and unbearably sad.

That’s how I feel, really: unbearably sad. I am so tired of Joseph and of being his mommy. I am also tired of Blue Eyes and being his wife.  I hate the financial pressures we’re under. I am sick of the financial demands of the biomedical autism industry. I feel claustrophobic in our house,and Joseph is such a pill that leaving the house is almost not worth the trouble. I’m tired of trying – of being the “up” RDI mom, of being so committed to the cause of curing my kid of autism. I want my life back. I don’t want the life I have.

I don’t want to see Joseph for another moment. I can’t stand him. I hate him. I hate being his mom.

The feeling I have about Joseph right now is like something creepy on your skin – I want it OFF. And I hate feeling that way about him. I beat up on myself that I feel that way. But in a very real way, he is the cause of all this pain and discomfort, so it’s easy to blame him.

I’m tired of trying to stay so damn conscious during all of this. I don’t want to use it anymore for my spiritual growth. I want it taken away. I want Joseph to get hit by a car so that he’s just gone, it’s over, no more. Give away the toys, the  books, the clothes to some other children and get our lives back. Sleep. Go on vacation. Enjoy ourselves. Read books. Meditate. Find ourselves again. Go into silence and seclusion for a month. Go on a huge backpacking trip, Blue Eyes and me, in some indescribably beautiful place for a long time.

Why do I have to go to an RDI Conference for my vacation? Why do I have to go fight for my son’s life, keep pulling him out by the fingernails, when I’d rather drop him in and let him go? Is it just that I’m so tired? Where did my motivation go?

What a black, black space. I want to fight it and yet it holds me here,  not loosening its grip. You’re not done here, it tells me. There’s more to see. Hang on a little longer. I think longingly of friends I could call, people who could listen and talk back and help me out of this. But then I talk to them and it doesn’t help. I think this is between me and the Darkness.

I feel like I’m falling to pieces. I don’t see any way out.

***********************************************************************************************************

I remember those days — although, thankfully, they are fading into that lovely faraway place where the sound is dulled and the edges aren’t so sharp. But parents all over the world are going through what Blue Eyes and I went through. I don’t think us ASD parents talk enough about the bad stuff, like wishing our child would get hit by a car so it could be over. One of my intentions, when I started this blog, was to be completely authentic. Saying the bad stuff is part of that — so, yes, when it was really bad I got so low that I wished my kid was dead.

Things are so much better now. I was in the kitchen this evening and Joseph was pestering me: poking me and teasing me and just plain bugging me. I realized he wanted my attention, so I sat down and started teasing him back. We had a great, goofy time together and I took it for granted. Until I sat down and re-read those words I’d written in 2008.

What I didn’t know in 2008 was that it gets easier. Even if Joseph had never improved, I have changed. I have gotten stronger. I’ve discovered resources to help me through. I’ve found people and programs to help shoulder the burden so that we’re not alone.

And then there’s that lovely concept: acceptance. One of the great gifts Joseph has brought me is a deeper acceptance of things simply being the way they are. Resisting brings misery. Acceptance brings freedom.

I still work on acceptance. Just yesterday I ran into an old friend and, while we caught up, Joseph flapped and hummed. My friend didn’t know about the autism, but there it was, in plain sight. I didn’t like it, not one bit. But after a while I remembered that, if you fight with reality, you always lose. So I stopped fighting.

What a long, strange trip life is. Our limited perspectives only see so much, but I believe that, when this lifetime’s over, I’m going to sit down with God and say, “Ohhhh, that’s why I needed a child with autism. Look at how much I grew, how much I let go of, how much compassion I gained. Thank you ever so much for that opportunity.”

Yes, I can finally say thank you. For the trials and the terrors, for the learning and the letting go, I truly am grateful. Thanks, God, for the whole long, strange trip.

Joseph and I were having lunch the other day in a little cafe when the sweet face of a Downs Syndrome boy suddenly popped up at our table. This boy couldn’t speak too well but he obviously wanted to make friends with Joseph, and we had a delightful little interaction.

When he’d gone, Joseph said, “That’s James from my summer program!” I figured it couldn’t be, because this kid seemed a few years younger, but I checked it out with his mom and confirmed that he was not James.

Later on, I told Joseph that the reason this boy looked like James was because they both were born with something called Downs Syndrome, and I explained a little bit about what that meant.

I intentionally have conversations like this with Joseph from time to time, because, brick by brick, I’m laying down a foundation. We’ve talked about people who have no arms and who have learned to use their feet to eat, paint and play with toys. We saw a cognitively-challenged girl not long ago, and I used the occasion to talk about people who move and think  differently from the rest of us. Not that they’re any less than the rest of us — just that God’s given them a special role to play.

I go through life with a Special Needs lens on. I notice people with special needs so much more now than I used to, and the truth is I take more delight in them than I used to. I admire these souls who have come in with such courage, daring to be different in a society with major conformity issues. I am at ease with them even if they’re “deformed”, using a breathing tube in a wheelchair. This is just another gift that Joseph has given me.

Maybe one day Blues Eyes and I will tell Joseph that he, too, thinks differently from most people. That God gave him a special way of looking at life and that we earthbound people call it autism.I’d expected to tell him long before now, but it’s simply never come up.

Why hasn’t it come up? It’s said that when we’re very young we form impressions about who we are and the world around us. From then on, we unconsciously accumulate evidence to confirm our impressions.

For example: Remember my last post, where I couldn’t grasp how to tie a certain knot and was secretly convinced that I was handicapped? I was in the mentally gifted program at school; I got lots of accolades for being smart. And yet there I was, unable to do this knot and convinced it meant I was slow, stupid, mentally damaged. Because I had severe low self-esteem as a child, I attached myself to the external evidence that matched my internal conditions.

I can only gather, therefore, that Joseph does not have the internal condition of being different in a bad way from others. He has never asked us why other kids are okay in noisy crowds and he’s not. He’s never asked why he flaps his hands when none of the other kids do. He simply accepts himself as he is, without a lot of mental accusations.

This is great! And it may not last forever. Quite possibly, as Joseph gets older and awareness increases on both his part and in the kids around him, he’ll be told, or he’ll see for himself, that he is different. The experts say that this often occurs in 4th grade — as, not coincidentally, does an increase in the autistic child’s level of anxiety and depression.

That will be the time to have the autism talk.

What will we say? I’ve thought about this through the years, and I still don’t have a hard and fast answer. Something about how his brain is wired a little differently than most people. That this wiring makes it harder to understand social cues. That he has an extra sensitivity to noise and overstimulation than do most of us.

But just as I make it a point to talk about how all of us have certain gifts, I will do the same with autism. Sensitive people are the poets, the artists, of our world. Different people think outside the box and therefore can come up with ideas and solutions that would never occur to the rest of us (Bill Gates, for example). I collect articles about autistic people and how they’ve turned their challenges into gifts — and I will present these to him.

Hopefully Joseph will take the understanding of autism not as a reason to limit himself, but as a way to understand himself better and take advantage of his strengths.

When the time comes to talk about autism with Joseph, I pray for the wisdom to present it to him in a way that helps without hindering, that expands awareness without labeling.

I also have a prayer for myself. I pray that I see Joseph as an amazing soul who happens to have autism. I pray to remember that this soul chose autism as a way to help himself and many others, including me — definitely including me! — to grow.

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.

yearn·ing

[yur-ning]

noun 1. deep longing, especially when accompanied by sadness

Toward the middle of Joseph’s swim lesson, the next class starts filing in. It’s a special needs class in a way that’s very different to Joseph’s special needs: it’s adults, in their mid- to late- life, who are dealing with physical disabilities. They get into the warm water pool to walk and stretch, very gently and slowly.

They come early, because it takes each of them a long time to get changed and shower. Today Judy comes first, shuffling slowly through the door. She is bent over nearly double — looking, in profile, like the hunchback of Notre Dame. Her face screws up with the pain of walking each time she takes a step.

Next is Bill. I think he had a stroke, as half his face is paralyzed. For some reason this makes him look  like he’s constantly surprised. His body moves at a snail’s pace, and I marvel at the patience of his caretaker, who walks beside him.

Last is Linda, slim and pretty. She is by far the youngest in the class, perhaps in her late 30s. Until a few weeks ago Linda would walk in slowly, leaning hard on a walker, with her caretaker behind her in case she was needed. But now Linda’s caretaker  has a new role: pushing Linda in a wheelchair. I’d hoped it was only temporary — that Linda would get back onto her feet — but it seems like it’s her new reality.

I watch Linda get wheeled through the door and down the aisle to the dressing rooms. She looks over at the kids in the pool and I see it, just for a moment, on her face: pure wistfulness, a yearning to be in that pool, beating the water with strong legs and slicing the water with rapidly-moving arms. Like those kids. Sorrow that it isn’t that way for her…that, in fact, it’s going the other direction. It’s over in a flash, and then her face is calm and composed.

I know that feeling of yearning — of deep longing, accompanied by sadness. I yearn to have what parents of a typical kid has. And there is Linda, yearning to have what my kid has.

Geez. What a messed-up world.

While I was grocery shopping today, a baby girl and I met eyes. She smiled at me, and I smiled back. Later I saw her again, down another aisle. This time she called out, “Hi!” and gave me another great smile. Naturally, I answered her and smiled back, enjoying the connection with such a precious little cutie.

Then I felt the yearning again. This girl, she was getting the feedback system that our society gives to cute, friendly kids. Neuro-typical kids. It’s full of positive feelings. This girl feels liked by strangers, comfortable in her world, knowing that she is great just the way she is.

It wasn’t that way with Joseph. He is, by and large, withdrawn from strangers — and even from many people he knows. That sweet, shy smile; that teasing, flirtatious grin — not on my kid. So what kind of a feedback system has he gotten from our society, I wonder. I don’t think he feels loved and accepted by the world at large.

Then there is my friend, Therese. Kids are laughing and making fun of her ASD son in the classroom. Here we have a negative feedback system — and from his peers, no less. When Therese discussed with her boy a conflict he had unknowingly created with another child, he turned to her and said sadly, “Help me, Mommy!” She cried for hours.

It’s hard to be the different one. Especially when you don’t have the understanding to change it.

Therese yearns for it to be better for her son, for herself. I yearn for things to get better for them, too. Just now I am strongly yearning for Joseph to make a friend — one true friend — someone who will stand by him when things get rough, which they will.

I yearn not to be in this autism club that no one wants to join. I yearn not to be living, as someone put it once, a mother’s worst nightmare.

And Linda yearns to run, to dance, to swim. Or, at the very least, to be back on her walker.

I don’t have any answers today. No glib responses. I’m just here, in this space. Yearning. For myself, for my son, for anyone on this planet who has some deep pain and yearns for it to be otherwise.

Dear God, bless us in our pain. Help us, if we can’t surrender it to you, at least to share it with you.

Yearning. Just yearning.

I knew it the moment I saw him this morning. Something about the angle of his head, the placement of his eyes. The way he went directly into the living room and started humming, humming, lost in his own world.

Regression.

Blue Eyes and I had been hoping to go as a family to the monthly potluck that our friends have — to celebrate each other and this beautiful spring day. When we mentioned it to Joseph he cried, saying he didn’t want to go, he couldn’t go, he was scared of the dog, he wanted to stay home.

We couldn’t go. It would have been ridiculous to drag him, in this state, to a home filled with people on the inside and dogs on the outside.

I don’t know quite how to describe the panic and moroseness that we, as Joseph’s parents, go into when he regresses.

First off, we try to solve it. We think, what brought this on? Is it because we let him have a tiny bit of salad dressing with dairy in it yesterday? (Could the tiniest bit of dairy really do this?) Did he sleep really badly? Is it all the pollens floating around? Or, we ask hopefully, is he simply on the brink of a developmental surge?

Next we try to bring him back into our world. We get him to do chores with us, to run and play with us; we try many ways to engage him. Nothing works.

He’s so very autistic-looking. His gait, his posture, his eye contact — everything is off. It feels so hopeless.

Late this afternoon we went to our local co-op. While I was getting some potatoes, Joseph started pushing the shopping cart along. He didn’t notice that he was getting in people’s way, banging their carts with ours, squeezing one poor woman against the wall.

I was calling to him in that stressed-out, pissed-off voice of the parent, trying to get his attention, when these arms went around me and hugged me.

I turned around to see an old friend, a fellow yogi. He looked at me with all this light in his eyes and I suddenly felt the dark cloud that was around me. The light coming through him magnified for me what a dark place I was in.

Ugh.

Sometimes we think that there is no limit to Joseph’s future. We envisage him being a professional musician, having a wife and children and friends and lots and lots of happiness.

But this evening it was different. Blue Eyes and I discussed putting Joseph into a home when he turns 18. Maybe some kind of halfway house for disabled adults — something where he could bag groceries during the day and have a place to live at night. We grieved all the time and energy we are putting into him — the difficulty of our lives — when it is going nowhere.

And that, folks, is how we respond to regression. It is hard. So very, very hard.

I’ve never asked this before in my blog but, if you’re inclined to pray, would you be so kind as to pray for Joseph and Blue Eyes and me? We could use a little extra help right now.

Thanks.

I love our meditation group. Every Tuesday night, friends — old and new — come over to join in meditation together.

We started it a year ago and it was a huge stretch, given that we were exhausted physically, mentally and spiritually from our journey with Joseph. One of the biggest obstacles was that I didn’t feel I had the energy to get the house clean every week — much less have any spiritual clarity or inspiration to share.

But here’s the thing: it wanted to happen. So I got out of the way and let it happen. Now I find that it’s easy to keep the house up. Instead of having to clean for three hours because we invited friends over, I just run the vacuum cleaner over the rug and say, “Come on over!” A kept-up house is an easy house to keep up. Wish I’d discovered that years ago!

And the energy has come. At first we were simply exhausted every Tuesday night. But something’s shifted in the last year, and now all three of us look forward — with energy — to sharing our Tuesday nights with fellow devotees.

This last Tuesday, I got inspired by a loyal member of our meditation group: our cat, Ollie. Ollie, like all members of his species, has perfected the art of deep relaxation, and this is what he was practicing while the rest of us meditated. At some point I heard him heave a deep SIGH of contentment — the kind of sound you make when you’re slipping even more deeply into rest, when you’re surrendering perfectly.

I immediately imitated Ollie, heaving a deep SIGH and just letting go into the Light. More and more in my meditations there is a part where I simply rest in God, and Ollie providentially reminded me to do that.

It was, in a word, Divine.

Sweet rest. Sweet letting go. Sweet, sweet surrender. I am remembering to lay down my burdens and be who I truly am: a child of God. I lay my head in Divine Mother’s lap and allow her to cradle me. It nourishes me on a deep level.

I’ve been thinking about the concept of holding lately. We hold others in prayer; we hold them in our thoughts; we hold them in our hearts; we hold them in the Light.

A lot of people have held me in the last four years, since getting the autism diagnosis. Some were old friends, some were family; some were new people who showed up, I believe — professionals and new friends — just to hold us through our struggles.

It’s been so intense. Words cannot express. Sometimes life hits you so hard that you can’t stand up by yourself. I never could have made it without being held. I am eternally grateful to those who did the holding — and to God, who held me up through them.

I listened to a pastor speak recently. He told about a dreadful tragedy that befell him where he and his beloved wife got into a car accident. She was killed. He went in and out of consciousness, but finally woke up for real in the hospital. At that point he was told about his wife’s death.

The pastor said that the first thing he realized was that, as tragic as the situation was, God was in it. And that this God was the same God that had been there before the accident.

So powerful. And so true of all of it — the whole journey — mine, yours, everybody’s. God is in it. This is what I held onto when it took all my strength to get out of bed in the mornings. This is what kept me going when I felt so hopeless about Joseph. This is the concept I clung to even when I didn’t feel its truth anywhere near me.

Now, with Joseph making almost daily progress, with sleep happening for him and for me, with a beautiful, supportive group of people to meditate with, I feel grateful. And humble.

What a life. What a journey.

Thank you, God, for being in it.

Joseph is doing some quantum leaps at the moment. The way we can most see it is in his drawing. You see, his coloring has been mostly squiggles and blobs and blurs, which he has interpreted as trains or thunder or some other objects.

But the other day, in preschool, his amazing teacher taught him how to draw faces. She got a mirror out so that he could look at his own face, and she had him look at hers as well. They figured out together that there are two eyes toward the top, a nose in the middle, and a mouth underneath.

And now Joseph draws face after face, with bodies, legs and feet, too! It’s an exciting step in development. One of my friends, who hadn’t seen him in perhaps a month, couldn’t believe the changes when she saw him yesterday. So hurray! for progress.

We were driving home from the store the other day when Joseph said, “There’s another silver Matrix!” Sure enough, right in front of us was the exact same make, model and color car that we drive.

I started waxing philosophically to Blue Eyes. Maybe that’s me in a parallel universe, I said. Maybe that me has a neurotypical kid. I wonder how she is different from this me?

So, Yoga Mother with the neurotypical child, how are we different? Have you had to learn patience as well as I have, repeating the simplest thing endlessly in the hopes that your child will one day grasp it? Have you tasted the humility of your child being different, being disabled, of your child (and, therefore, you) not fitting in when you’ve desperately wanted him (and you) to? What is it like to not have been imprisoned in walls of isolation — walls we are only now really breaking out of?

Most importantly, other Yoga Mother, I want to know what your spiritual life is like.  Have you experienced drowning in your own delusion — in stress, anxiety, hopelessness — the way I have?  Have you ultimately come to the knowing that God gives it all to us — that S/He weighs it out, measures it, makes sure it’s just right, and then sends it along — even if we never really understand why?

I think, other Yoga Mother, that the spiritual difference is probably the greatest difference between us. It’s not that you aren’t spiritual; it is the most important part of your life. But you haven’t been tested the way I have, and so you haven’t been forced to dig more deeply than you ever thought possible. You haven’t been broken open the way I have, so you haven’t experienced the same magnitude of comfort, grace, and simply the presence of Almighty Spirit with you every infinitesimal step of the way.

Would I trade with you, Yoga Mother of a neurotypical child? Yes. No. In a minute. Never.

Guess I’m not ready to answer that question. 😉

I have a friend who has recently turned 60. She says that, when you look back from that vantage point, everything that’s happened makes sense. She’s had some whopping challenges in her life — so, coming from her, this was no light observance.

And that is where I end today’s post: with trust. Trust that this journey is my journey. I wasn’t meant to be in that other silver Matrix. This road may have some incredible bumps, but it’s my road, my journey. So I bless you, other Yoga Mother, and let you go your way while I, with trust, an open heart, and the grace of feeling God all around me, go mine.

In our sleep, pain, which cannot forget,

falls drop by drop upon the heart,

until, in our own despair, against our will

comes wisdom through the awful grace of God.

— Aeschylus

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

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

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

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

I can relate.

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

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

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

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

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

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

About Joseph.

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

Wow.

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

Chronic situational anxiety? asks Lisa.

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

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

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

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

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

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

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

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

Will this new approach teach me how to let go and sleep again? For three nights in a row now I have closed my eyes to sleep and not opened them again until morning. It’s the first time in over three years that this has happened.

So I think maybe I’m on the right track.

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

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

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

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

Sigh.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

*                                           *                                      *

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

Resilience.

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

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

picnic in the parkWhen I was a teenager, I did the est training. I remember that the trainer spoke about the uselessness of hope. To demonstrate, he held up his car keys and said, “Hope that these keys don’t fall.” Then, of course, he dropped his keys to the ground. Hope doesn’t work, does it? I saw the proof with my own eyes.

Looking back, I see what a disservice that was to me at such an impressionable time. For many years after that, I didn’t allow myself to hope. When I got consciously onto a spiritual path, I realized how wonderful hope was and I allowed that spark to reside again in my heart. It’s made a huge difference in my happiness quotient.

For ASD parents, hope seems so very, very important. What else could keep us going when there are no signs of improvement in our chldren? I believe that hope is the best medicine parents can take in our situation — a direct antidote for the depression that can come along with having a child on the spectrum.

3 1/2 years ago, when Joseph was diagnosed, I had very little hope. I was bone weary and grieving in body, mind and soul. But the human spirit is resilient, and we had the grace of a team of people who held us up as parents and worked with our kid.

And now — after years of RDI, biomedical treatment, occupational therapy, blood, sweat, tears and prayers, Joseph is on his way to recovery.

I do not say that lightly. I say it with trepidation that the gods will quash me for my audaciousness.

But I also am not the only one saying it. Yesterday Joseph’s swim teacher – a tough German lady who stands no nonsense – told me that, in all her years of working with ASD kids, she’s never seen one grow so much so fast. I watched the swim lesson and I saw it, too. She asked, “Whose turn is it?” and Joseph said, “Mine! Mine!” Later she gave him a hard time for jumping in too soon and he argued with her. It was great.

And then there was today. Joseph’s preschool teacher pronounced him cured, healed. She said she can’t even talk about mainstreaming him anymore, because there is no special needs kid to mainstream.

So, you see? I am not making this up. Joseph has been on Valtrex for ten weeks today, and it has made an amazing change in his life, in our lives. But he had to be ready. It took all those years of helping to heal his gut, of strengthening his immune system — basically of laying the foundation — before Valtrex could step in and do its magic.

I know he is doing years’ worth of development in weeks, and I appreciate the raves from his teachers. But I don’t think I can let up yet: We’re not all the way there. We still have crowds and gatherings to work on, pronouns to get right, vocabulary to build up.

I also have yet to hear Joseph say, “Mom, look!” You know how some mothers feel they will die happy when their kid gets married? I feel that way about when I’ll hear, “Watch me, Mom!” for the first time.

But you know what? I think these things are coming. I hope they are coming. I pray they are coming.

Yes, I got hope. And how grateful I am for it: that thing with feathers that perches in my soul.