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Blessings,

YogaMother

My Journey with Joseph (transcript of my speech)

I am the mommy of a bright and beautiful 5 year old boy.

Conjures up images of making peanut butter sandwiches and putting band aids over injured knees, doesn't it?

Well, that is the kind of mommy I am. But in the last few years, motherhood for me has taken a turn that is very different from what most mommies face.

You see, for the last few years, I have been battling – furiously! -- to save my child's life.

Joseph arrived the way most children arrive. He said his first word, "duck," about the same age most children say their first word. He took his first steps, at the home of a friend, at about the age that most children take their first steps.

But as Joseph neared the age of 2, something started to change for him. He began to lose interest in his toys and his books. His communication diminished to the very basics. When we took him out, particularly to "fun" gatherings with lots of other kids, he would scream and scream at the top of his lungs. The only way to calm him down was to bring him home.

Blue Eyes and I were scared. Joseph was our only kid. We didn't know what was normal and what wasn't, but we felt that something was wrong. We didn't know who to turn to or what to do.

Shortly after Joseph turned 2, a psychiatrist at the prestigious MIND Institute gave us a diagnosis: mild autism. It felt like a death sentence.

Indeed, they say that getting this diagnosis is second, in pain and grief, only to hearing that one's child has a terminal illness. In many ways, it felt like a death. The child we knew was leaving us, slipping behind a veil that we couldn't reach through. Our hopes, desires and expectations were all murdered with that single word: autism.

Many children on the autistic spectrum have what are called co-occurring disorders. Joseph's was that he didn't sleep well. He'd wake up 2, 3, 4 times a night and be awake sometimes for hours at a time. This meant that, pre-diagnosis, I was already a walking zombie. After the diagnosis I would wake when Joseph did but would wake myself up as well – this time with a huge gasp, as I realized yet again that my son had autism, and I didn't know what to do.

We live in a wonderful community. There is a department here called Infant Program which works with children from the ages of 0-3. They rallied around us, and every weekday someone came to play with Joseph, to work with him. Together, slowly, we managed to reel him back from the dangerous precipice he was sliding down. We got a little more eye contact, a little more engagement. Whereas before we'd been feeling only despair, we now started to feel a little bit of hope.

We began to research, to explore, to ask questions. We tried several behavioral therapies and chose one, Relationship Development Intervention, that we love and still use on a daily basis.

As we continued to investigate, we learned something that has made a huge impact in our journey with Joseph.

We discovered that, whereas most doctors know nothing about autism and will tell you it can't be treated physiologically, a small percentage is now stepping forward to say something completely different.

These doctors are saying that, almost across the board, children with ASD have similar physiological symptoms: severe gut disorders, significant levels of heavy metals in their systems, and major food allergies.

If you look at only the food allergies, you see that these kids crave what they are allergic to: the gluten in wheat and other grains, and the casein in dairy products. These foods create an opiate-like reaction in their brains – it zones them out. Isn't that one of the major components of autism?

By the time Joseph was 3, he was completely off all gluten and casein, and he remains so to this day. We found one of these specialist doctors. She was 3.5 hours away. We made the trek to see her often. She charges $350 an hour, and on top of that there are the lab tests, the supplements, the medicines, and all the other treatments she wanted us to try. We took out a second mortgage in order to afford this.

We are not alone in this. All families with autism face the pain of the diagnosis, the grief of their child slipping away, the horror of the co-occurring disorders and, should they choose to go this route, the incredible financial stress of affording these doctors and the leading-edge treatments…which, by the way, insurance virtually does not cover.

Joseph is now 5½. He has made great strides. For one thing, he generally sleeps through the night. It's amazing how well you can sleep when your stomach doesn't hurt.

He goes to a typical preschool, where he is the only child with autism. Visiting teachers come and can't pick him out. In many ways, he is indistinguishable from his peers. He plays tag, hide and seek, and imaginary games with his friends. When I come to pick him up, he runs to me with a happy "I love you, Mommy!" smile that no parent of an autistic child will ever take for granted.

I would like you to know that autism will affect your life. It is an epidemic. 1 in every 150 children is now diagnosed with ASD – 1 in every 95 boys.

Many families with autism are just trying to survive on a daily basis: It's that hard. Because Joseph has come so far, I have been able to step forward to be a mentor for parents with newly-diagnosed children.I am not the only one. There is a growing movement of parents who have significantly recovered their children, and they are reaching out to other parents.

So when your friend or relative confides in you that they are dealing with an autistic child, please give them hope. Tell them to find these parents and these doctors, to explore what they've done and to see what might work for their child. Tell them to start right away, and tell them that there is much that can be done. There are many reasons to hope.

I'd like to close with these words from Emily Dickinson. They are about hope. They have been on my office wall for 3 ½ years, and they have helped me through some very dark times.

I dedicate them to my son, Joseph, who has been such a trooper through all of this.

Hope is the thing with feathers
That perches in the soul
And sings the tune
Without the words
And never stops – at all.

Going Public with it

For a long time, it was a secret to all but our closest friends and family. Because Joseph is high-functioning, I could get away with not telling anyone. After all, no kid the age of two (ok, no boy the age of two) has social skills worth noting, and anything else could be written off as quirky toddler behavior.

People called him shy, or young for his age. But they didn't call him autistic. And that was important to me.

Jenny McCarthy has written that she knows she's putting her son, Evan, into the limelight as the poster child for autism. And I wonder, how good is that for Evan?

Even I look at Joseph sometimes and only see autism. Do I really want the rest of the world to do the same? Is it fair to put that label on him?

I don't know what's fair. I only know that, for a while now, I've been feeling a strong inner compulsion to go public with it.

I suppose this blog has been the first step. Friends have read it and reached out, saying they had no idea what we were going through. Joseph's preschool teacher, who takes classes herself, said they'd covered sleep difficulties when studying autism, but only after reading my blog did she really get it (something about me acting like a raging alcoholic in the middle of one dreadful night -- see July 13 post).

But I am a public speaker, and it is time to talk about it. Not just for the rest of us, but even for Joseph. The pitfall, yes, is that more people will label him. But the trade-off is that more people will understand him, and kids like him.

To be truthful, I am not looking forward to this label for myself. Mother of an autistic child. Mother of a child with a disability. Yuck. That's not who I am. But it is a piece of who I am . It has shaped me and molded me, and it's time to honor this process more completely.

So, this coming Monday in Toastmasters, I will tell the story of how Joseph was developing normally until around the age of 2. I will speak of the devastation of an autism diagnosis and the black hole I fell into afterwards - complicated greatly by a continual lack of sleep. I will talk about the treatments that have helped us - the lesser-known dietary and biomedical sides, the more known behavioral approaches. I will describe how far he's come and how the future is still uncertain. I will tell them that they'll be hearing a lot more from me about autism after this.

What I want to do is ask them, beg them, not to look curiously at Joseph -- the autistic kid -- after this. I want to say, please don't start talking to him in a baby voice, or asking me how old he is when you could ask him.

I want to say, please know you can still ask me how my kid is doing -- it's not a taboo subject -- I am still me, and he is still him.

But I won't. Human nature is what it is, and if I am being asked to step up to bat on this, then I will do so and let God handle the rest. As for Joseph, pardon the switch in analogies but his karmic wagon is hitched to mine and I can only go with my intuition.

Six days to ready myself. Gulp.

The Biomedical Side of Life

The biomedical aspect of autism is said to be "controversial." It hasn't been "proven" to be effective.

HA!

Come on. Almost across the board these kids have gut issues, allergies (to food and pollens), and low-functioning immune systems. If the body and mind are interconnected, wouldn't it make sense that addressing one helps the other, and vice-versa?

I am all for addressing the health issues of kids with autism. But I stray from the massive biomedical wave because of my experience with our DAN (Defeat Autism Now) doctor.

A DAN doctor is an MD who has undergone specific medical training, and who continues to keep up on medical issues, regarding autism. Good DAN doctors are in high demand.

When we found Dr. M, she had a 2-month waiting list which soon increased to 8 months. She charged $350/hour. She was in charge. She knew it all, and we obviously knew nothing. After our first consultation with her we walked out in a daze, arms full of medicines and supplements, about $1800 poorer. Soon Dr. M started charging $15 just to answer a simple question in an email. But we felt lucky when that happened, as she was very hard to reach.

We took out a line of credit on our house to pay for all the appointments and treatments. I spent nearly all my time giving something to Joseph: drops, pills, capsules, drugs, vitamins, shots, creams.

And you know what? It felt g-o-o-d.

First, when you throw all that money at something, you feel like it's really going to work. Then, when you spend all your time, day in and day out, on the biomedical stuff, it feels like you're finally doing something. And with autism, you really want to do something.

A year passed. We were really struggling financially, but we saw some improvements. The time came for Joseph's yearly exam with the good doctor. She again ran many tests, and we waited eagerly for the follow-up phone consultation.

Something happened just before the consultation. Joseph started talking more and engaging more. He was markedly different. We were so excited.

Then we got on the phone with Dr. M. She said that the lab results were dismal. She said that Joseph was terribly toxic. She said he needed to begin chelating immediately.

Blue Eyes and I stood there, listening to her on the speakerphone as she told us how sick our child was. And in the living room, Joseph was laughing and playing, emotion sharing with us and referencing us.

Do you know that saying from the Audubon Society? When the bird and the book disagree, believe the bird.

We chose to believe the bird. And that was the end of our experience with a DAN doctor.

I believe that Dr. M is an earnest person who wants to help children with autism. At the same time, I believe that she sees an opportunity to make piles of money, and she takes advantage. I also believe that she puts way too much stock in lab tests and not enough in what parents have to say about their children.

As for us, we kept searching. After Dr. M, we tried herbs. Then we tried homeopathy. Then we tried chiropractic. But we hadn't yet found the practitioner we were looking for: a highly knowledgeable, truly caring, accessible person who would join us as a partner in recovering Joseph.

We discovered the Generation Rescue website (www.generationrescue.com). We got in touch with an "angel," (a mentor) who lived fairly close. She told us about the naturopath she worked with in recovering her son, and it wasn't long before we went and met Dr. Glen.

On that first visit he gave us his cell phone number. "Call anytime," he said, "I almost always call back within 24 hours." He spent 2 hours with us -- looking, listening, taking notes, sharing his expertise -- and charged us $165 for his time. The supplements were extra. We walked out feeling empowered, heard, and happy to pay $300 for such valuable help. That was 5 months ago now. We couldn't be happier.

Everyone has to find what works for them on this journey. But I say: listen to your gut. If red flags are going up around a practitioner, feel free to walk. There are some really great people out there -- trust your intuition and stay open to them.

I think a big part of life is about getting out of our minds and learning to listen to our hearts, to our intuitive side. When we have a child with autism, this becomes not something we'd like to be able to do but something we must learn to do. Our child's life literally depends on it.

I saw an amazing bumper sticker at a crucial moment in my life. It said something like this:

Don't panic. Breathe. Watch for the signs. You will be guided.

And if that isn't good advice about how to help a child with autism, I don't know what is.

"My life wasn't meant to be this difficult!"

I read an article about a jet-setting executive in the film industry who got involved with yoga. Yoga worked its magic on him and, as it can, turned his life around 180 degrees. He went from Hollywood riches and fame to living extremely simply, while working to improve the lives of terribly impoverished children in Cambodia.

He was working in Cambodia one day with these kids, who were living in a toxic waste dump that looked like the apocalypse, when he got an "emergency" call from LA. It was an actor having a meltdown because the private jet he was to ride in didn't have the right amenities for him. The actor was quoted as saying, "My life wasn't meant to be this difficult!"

Ironic, right?

And yet.

After we read that article, Blue Eyes and I started quoting this line to each other. We go places where "normal" families are having "normal" times. Parents are off socializing with each other while their kids are playing together somewhere else, and we --

Well, we're usually with Joseph, soothing him if it's too stimulating, or helping him to learn some new RDI objective, or intervening so that he can interact socially with his peers.

And it's easy to look around and say, "My life wasn't meant to be this difficult!"

Or was it?

Yoga's main principles are the niyamas and yamas -- roughly translated as the do's and don'ts of spiritual living. One of the yamas is non-envy. Its corresponding quality, which we are meant to cultivate, is contentment.

I work with non-envy and contentment. I watch my ego wishing things were otherwise, wishing we could be one of those normal (and, therefore one assumes, happy) families.

And yeah, I get sucked in. Sometimes way in. Then I get to drown in self-pity for a while, and I feel isolated and the world seems so dark.

Then, by some grace, I eventually remember: it's not out there, it's in here. It's an inside job.

Yoga calls contentment (santosh in Sanskrit) the supreme virtue. And I remember that the circumstances in my life are not my business -- they are God's business. My business is what I do with those circumstances.

Sister Gyanamata, one of Paramhansa Yogananda's great disciples, is quoted as saying, "Your religion is tested in the cold light of day." Having a child with autism is as cold and light a day as I've ever experienced.

Gyanamata also said, "Change no circumstance. Change only me."

And so, remembering who and what I am -- a spiritual being having a human experience -- and what makes me happiest, I pull my mind out of the delusion of wishing things were otherwise. I open to embrace this moment, with gratitude and acceptance.

This is not some fake "tra-la-la, everything is great" kind of attitude, but the harnessing of all my strength, all my resources, to pull against the strong downward current and reside in that place of peace within.

Our life is not as simple as some people's appear to be. But if I truly believe that there is a Father/Mother God who gives us exactly what we need for our highest good, then how can I possibly believe that this is an accident? Or that it should be other than it is?

Fighting it, resisting it, blocks the flow of energy. As Byron Katie says, "If you fight with reality, you always lose." Exhaling and letting life be as it is opens that channel between me and the Divine, and I feel the contentment of knowing things are exactly as God would have them.

So, God, I thank you for the remembrance that there is so much more going on than I can see. I thank you for this beautiful boy and for the magic of having him in our lives.

Change no circumstance. Change only me.

Wow.

Oh, poop!

Who would have thought that poop would loom so large in our lives?

It's such a natural thing. You eat, you poop, you sleep.

Well, one out of three ain't bad. Actually, no -- it is bad. Yet another example of autism being counter intuitive.

Many children with autism have gut issues. Joseph's is constipation. It was there from day one. At an infant check-up I remember asking our pediatrician if I should be concerned that Joseph appeared to struggle a lot, and only managed to poop about every two weeks. She assured me that this was fine -- nothing to worry about.

Note to self: do not trust your doctor.

On the other hand, we owe this doctor some thanks. It was more of her "advice" that got us to our first biomedical doctor. When Joseph was around 2 1/2, I went to see her with my worries about his constipation. I told her how hard I work -- with figs, prune juice, smooth move tea -- just to make sure he goes every few days. Not to worry, she said. Once a week is often enough.

So I relaxed. And Joseph didn't poop.

Within a couple of weeks he was spending most of his time on the floor, knees tucked under his belly. He'd look up every now and then, smiling as usual, and then he'd fold over into what I assume (now) was a tummy cramp.

We started to get really worried. He dragged himself around like his body was too heavy to manage. He was cranky. He slept more horribly than usual. His eyes glazed over.

Our RDI consultant said, Go see a biomedical doctor! Now!

So we called one in the San Francisco area and managed to make it in on someone's cancellation within a relatively short time.

The doctor examined Joseph and said, "This is a very sick boy you have here."

From that day on, we were committed to having this kid poop.

First of all, why didn't he poop? I think it was a combination of things: gut issues (things just didn't work well in there), food allergies messing things up and, lastly, a resistance to the actual feeling of pooping. We'd watch him get this look on his face and then he'd cry out, "No! No!"

He was stopping the poop.

Fiber became a household word. We knew the fiber content of everything he ate. Lots of water. Lots of exercise.

Three months went by. Still things weren't moving well. The doctor said, Let him have enemas!

Oy. For a year we did enemas, pretty much every other day. Joseph hated them. We hated them. They were traumatic all around.

But, darn it, they did the trick.

S-l-o-w-l-y things got better. After being gluten and casein free for two years, things started to do what they were supposed to do. Joseph began to get over his reluctance to that poopy feeling. Other doctors and healthcare practitioners jumped in with other great ideas. A star chart worked well because, after 5 poops and the 5 resulting stars, he got to pick out a new toy.

And now, ladies and gentlemen! He poops every day, often twice a day! Usually at his own initiative!

Our naturopath, Dr. Glen, tells us that, just as a sick person will go on a downward spiral, so too a person who is healing will go on an upward spiral. And we see this with Joseph. Everything is getting better: sleep, poop, vocabulary, social skills (a little!), imagination, and more.

It is great to be going in the right direction.

Poop still looms large in our lives, but we are all starting to lose the trauma around it. It seems like, as far as Joseph goes, poop happens.

Finally.

Not sleeping: where the spiritual rubber meets the road.

Joseph used to wake up every single night...several times...for several hours at a time.

Night after groggy night.

Year after dreadful year.

It was torture. I nearly went barking mad.

I could easily have become a child abuser. The closest I came was in the middle of one particular night. Joseph had woken and was sitting in his room, playing (loudly) with his toys. I stormed in like a raging alcoholic, grabbed his toys and threw them out of his room, bellowing with all my might. He cried from fear.

Sigh. I am not proud of that moment. But I was almost insane. Truly.

When we went to our first biomedical doctor, I begged -- BEGGED -- her to give us some drugs to make Joseph sleep at night.

She refused. "Address his gut issues!" she said sternly. "How well do you sleep when your stomach hurts?!!"

The thing is, Joseph always woke up happy and stayed happy, no matter what hour it was. It didn't seem that his gut was bothering him.

But we took the doc's advice and addressed his gut issues.

That year he started waking up only once a night instead of two or three or four.

The next year he actually slept through the night now and then. We started to notice a direct correlation between pooping regularly and sleeping regularly.

Now that he poops virtually every day, he will go a month or so sleeping through the night! Then we might have 8 or 9 days of waking up for an hour or so. Then we're back to sleeping through again.

Is it a virus cycling through that is waking him up? Is it knowing that preschool is coming up? Is his gut still bothering him? Are we doomed to this forever?

As for me, my sleep is still traumatized -- thanks for asking. I have given myself permission to continue to use sleeping pills until Joseph makes it through the night for three months straight. After that (if the day ever arrives), I'll start to wean off of them.

The thing is, sleep is a very primitive, basic need. What specialists and teachers often point to as behavior problems in our kids can often be traced simply to the fact that they are not sleeping well. When a kid (or an adult, for that matter) sleeps well and regularly, you will sometimes see an entirely different kid.

So we've come a long way with Joseph, but we're not all the way there yet.

I once went to a satsang with Kali Ma, a spiritual teacher. She spoke about the different things we take refuge in: alcohol, drugs, chocolate, the internet, etc. Her guru advised her to take refuge in only three things: God, Guru, and satsang (other spiritually-minded people). This was a major growing point in her spiritual life.

I have become sane enough with sleep that, when Joseph wakes up in the night now or pops up at 4:30am, I realize that sleep is not a refuge that I am often allowed. I give it all to God: my fatigue, my energy level, my thwarted desires.

And when I'm open to God like this, I feel Him holding me, giving me strength when I feel I simply can't make it.

So. Take refuge in God. I like it. I practice it. It works.

And sometimes I take a power nap in the afternoon. :-)

The Value of Valtrex?

Jenny McCarthy's journey seems to be both loved and despised by other autism families. For me, I take what I like and leave the rest. I do believe that there is value in much of what she proposes, most particularly that the epidemic of autism is the canary in the coal mine. I believe it is a sign that our toxic environment is destroying us.

Joseph was never vaccinated, so we can't blame autism on that. However, when I was in labor I had an infection and they blasted me with antibiotics. Then, after Joseph was born, they did they same to him. My belief is that he came in with an already-compromised immune system, and this tipped him over the edge.

Our naturopath, Dr. Glen, added an interesting addendum to this theory of mine: since my gut was damaged by the antibiotics and Joseph existed solely on breast milk the first six months, there weren't the proper ingredients in my milk to help his gut to heal. Voila: autism.

Back to Jenny McCarthy. One of her colleages is a man named Stan Kurtz (www.stankurtz.com), who recovered his child from autism -- as did Jenny. I am not very knowledgable medically, but my understanding of Stan's pet theory is that many of these kids have an often-undetectable virus in their system.

He feels that the body will try to fix the crisis of a virus before addressing the problem of discharging heavy metals from the system. And we all know that children with autism have high levels of heavy metals in their bodies. They can't seem to dispose of it the way that typical children do.

So if lab tests don't pick up a virus, how can you tell there is one? According to Dr. Glen, an underriding virus will show up now and then in peculiar ways: unexplained fever, flu symptoms, eczema, that sort of thing. It will cycle in and out.

This does happen with Joseph every month or two, so we've decided to give Valtrex a try. We are very grateful to do this with the help of Dr. Glen, who is working to support Joseph's gut, elimination and detox processes while we undergo the Valtrex trial.

It's been a whole day. I am a little bit hopeful and a lot interested to see what happens.

Will it be Valtrex Schmaltrex or Valtrex the Miracle? Or something in between?

Stay tuned.

And good night.

Isolation and Autism

Like most parents with an autistic child, I have read a lot of books on autism. It interests me how few mention the isolation factor, because to me -- and my autism friends -- it's huge.

When Joseph was about 1 1/2 and the autism became really dominant, going places turned into a huge problem. He would either scream bloody murder or just flee the scene -- running to the nearest fence, where he could stim as he ran back and forth along it. He could do this for up to an hour. If I tried to drag him away, he'd scream his lungs out.

It got really embarrassing, and really frustrating. There always had to be two of us if we wanted to attend a gathering -- family reunion, parade, etc. -- one to chase the kid and one to actually attend the gathering.

And if Joseph screamed, everyone would turn to look (trust me, you couldn't miss that screaming)! The only way to calm him down was to leave. Sigh. So, after a while, we just stopped going places.

With the hindsight of understanding, I now know that going places, especially unfamiliar ones that included lots of people, was extremely difficult for him. And stimming -- repetitive motions -- calmed him down.

But at the time it was just rough. Blue Eyes and I snapped at each other a lot. We missed our friends. We missed our life. We thought we'd be stuck forever, the 3 of us, in our house, and that was that.

Is there any wonder that autism marriages have an 80% divorce rate?

I remember later on, at a support group with other autism moms. The program director of a children's services dept wanted to meet with us to talk about our needs. One of the things she offered was classes about parenting special-needs children.

"But how do we get there?" asked one of the women. "We have our kids to look after."

"Oh, we offer childcare," answered the woman.

We all practically screamed at her simultaneously: "Chilcare doesn't work for our kids!!"

That was it in a nutshell. We could barely get support because we couldn't leave our kids almost anywhere, with almost anyone. And even the professionals couldn't understand that.

That, my friends, is what made today so very special.

We have amazing friends. We all share a spiritual bond, whatever our path, and we've known each other for many years. During the summer these people gather for a monthly potluck and pool party at one of our friend's homes.

For over three years now, we haven't been able to attend these gatherings. Joseph just plain hasn't been ready. But today, we felt he was ready, and we went.

We were driving along and Blue Eyes and I agreed that, if we stayed an hour and things were very positive for Joseph, we would consider that a great success.

But we stayed 2.5 hours! And Joseph had a fantastic time! We had some hurdles -- namely, lots of dogs. Joseph isn't quite over his fear of strange dogs. But he dealt with it, which was amazing.

He enjoyed the company of the two other kids who were there. A bunch of us played Ring Around the Rosie together many times, and Simon Says, and all sorts of other silly games that you play when you're hanging out with 5 year olds in a pool. Joseph joined right in with us. He even led Simon Says a few times, telling us to "Rub your bellies!"

No one said anything because we were right in front of Joseph, but there were many unspoken messages between us. Messages like, We are so happy you are here and we are thrilled to see Joseph doing so well. One friend did say, "it's a miracle."

Perhaps it is. And here's another miracle: Looks like we get to join the human race again.

OMG

We are on a roll -- a gluten free one, but nevertheless a roll! ;-)

I brought Joseph to preschool today and stayed a while, which is what he likes me to do. It's been remarkably interesting to watch him during these transition periods.

At first, he'd run into the "baby room" (it's a mixed-aged school), where he could hide from all the other kids. After a while, he'd stay in the main room with everyone, but immerse himself in the trains or some other solo activity.

Now, 8 months into it, we are walking up toward the door and Dylan, another 5 year old, sees us through the window. He exclaims, "Yea! It's Joseph!" In we go. Joseph doesn't even stop to take off his shoes or wash his hands -- he is so excited to see his friends that he immediately runs to them and starts to interact.

Joseph's teacher and I end up in the baby room having a discussion about Joseph. After a few minutes Dylan and Maya run in, giggling like crazy, and crawl under the little trampoline.

The teacher, ever mindful about having Joseph included, says, "Why don't you find a way for Joseph to play this with you?"

Maya replies, "He's chasing us!"

And indeed, next comes Joseph, running and giggling, into the room. He finds the kids under the trampoline, climbs on top, and starts jumping in an effort to get them out from underneath. Everyone is having a good giggle. Then the two underneath crawl out and run, and Joseph picks up the chase again.

His teacher tells me she sees this level of interaction all the time now.

Life is good. I feel so hopeful.

Hope is the thing with feathers
That perches in the soul
And sings the tune without the words
And never stops -- at all.
(Emily Dickinson)

I put the poem, above, on my wall years ago -- shortly after the diagnosis. It has seen me through some dark times.

And now it's seeing me through some pretty happy ones.

RDI in Action

It's hard to explain RDI. Basically, it breaks development into thousands of tiny qualitative steps. A consultant assesses where you child is developmentally, and then the parents work with their child to take the next few tiny steps, which RDI calls objectives. Once those are mastered, you get the next objectives.

I've been to a number of RDI parent workshops, and the one thing that always comes up between us parents is what we call RDI guilt. Because RDI i s totally parent-centered, this is the guilt that arises because none of us feel that we do enough RDI with our kids. I have been known to suffer from RDI guilt -- but not today!

The inspiration started because Blue Eyes (husband), Joseph and I were at a festival in town. There was a bouncy house there, and we walked over and watched the kids jumping for a few minutes.

Now, let me explain that only once has Joseph been in a bouncy house, and that was at a private birthday party with only 3 other kids in attendance. Any other time we've encountered such an animal, Joseph has adamantly refused to have anything to do with it. Strange kids, odd set-up, lots of noise: forget it.

So I thought we'd watch and that would be it. But when the kids' turns were over, Joseph couldn't wait to go in. Blue Eyes went over with him and helped him through the little door.

But then it happened. Joseph started to scream, "I want out! I want out!" and Blue Eyes helped him out. Well, we tried, I thought.

Then I watched all that RDI coaching click in for Blue Eyes. Encouraging competency in these kids is a big part of RDI, and Blue Eyes didn't give up and let Joseph feel that he just couldn't do it. He got Joseph to start jumping on the little inflated part just outside of the bouncy house door. I was watching from across the way, and I could see Joseph's face go from unhappy and frustrated to exhilarated.

Then, with Blue Eyes' encouragement, Joseph crawled back in the house. Blue Eyes held his hand through the entryway, and Joseph jumped again. It wasn't long before Blue Eyes was out of the picture, and Joseph was having a great time inside the bouncy house. He enjoyed it just as much on his second round!

In RDI terminology, Blue Eyes scaffolded Joseph by helping him until he could do it in his own. It was some of the most beautiful scaffolding I'd ever seen -- and all the more so because it was entirely spontaneous.

I was so inspired that, on the way home, we stopped to buy lemons and honey. Once we got home, Joseph and I made lemonade together. RDI is all about interaction and apprenticeship, so it was easy to use those principles as I coached Joseph in juicing the lemons, filling the pitcher with lemon juice and water, pouring in and stirring the honey, and of course tasting as we went.

It was a very satisfactory experience for both of us, especially as we enjoyed our lemonade together afterward.

And, after that, we cleaned up his old paint cups and filled them with new paint. This, too, was very interactive and encouraged feelings of competency.

So today I am a rockin' RDI mama! And Blue Eyes is a blow-me-away papa!

I do love RDI, when I'm not feeling guilty about not doing enough of it. One thing I love is that it gets you out of the compulsion to drive your kid here, there and everywhere in order to see if other people (the "experts") can fix him. It scaffolds the parents so that they can work with their child in really amazing ways.

When talking about this journey of autism, RDI is fond of saying, "It's not a sprint -- it's a marathon."

And on this marathon, we find that, whereas typical kids may get something with just a few repetitions, our kid may need 500 times the repetitions that the typical kid does. BUT. We still get there.

And every time we end the day feeling encouraged, hopeful and competent, it sets us up for a great tomorrow.

"He'll be fine."

I had lunch today with a group of my wonderful woman friends. They are very compassionate people, so of course they asked for an update on Joseph. The woman next to me, in particular, wanted to know how he was doing in terms of being age appropriate.

I repeated the numbers his preschool teacher had given me (age 5 cognitively, age 3 socially), and Anna was impressed. She assured me, "He'll be fine." I disagreed, arguing that I didn't know if he'd be fine -- if he'd ever be a functioning member of society, if he'd ever have a friend, ever get married, etc. She insisted, "He'll be fine!"

I looked at Kas, sitting across from us. Kas' grown daughter is going through some major challenges. "You can't know." she said. "You can't possibly know."

And that's the truth. I can go 24/7 working to make Joseph better. I can do RDI 'til I'm blue in the face and shoot him up with B12 shots and take him to OT and feed him the right foods and etc etc etc -- and STILL I can't possibly know.

It's out of my control. When I realized that, not very long ago, it was a huge exhale. I am not in control. I can do my best, but the rest is God's. I can attend to my business, but I can't do God's business.

And the truth is, even my business is God's business -- if I'm doing it the way I hope I am, which is listening to guidance, watching for signs, meditating in order to stay connected, praying for help.

This makes even the hard times easier. Without God, it's no fun at all. With God, it's a divine dance, a divine mystery. I don't know -- and I can't know -- if Joseph will be "fine." As Byron Katie told me, normal people aren't that happy either. So what is "fine?"

So what do I pray for in this moment? The ability to let go and let God. To feel Divine Mother holding me, holding my husband, holding Joseph in Her ever-loving arms. To see Joseph in his beautiful perfection and not wish he was different. To see how the Divine flows through him so very wonderfully.

They say that, when we step out of a lifetime, it feels like it's about the length of time we spend seeing a movie. We look back and say, "That was a good one! Funny and insightful." Or whatever.

I don't necessarily want this movie to be a triumph over the odds. I want the main character to open her heart so widely that LOVE flows through in an unstoppable current. And that, I suspect, is the motive behind all of God's business.

Unlovableness

Every Monday for the last few months now we've gone to Saddle Pals, where Joseph gets to ride a horse flanked by 3 volunteers and 1 supervisor. It's an amazing program. Joseph used to be absolutely terrified of animals -- even our pet cat -- and this has changed his relationship with animals forever. He is still a little cautious, but always happy to greet a pet now. And he loooovves riding "his" horse, Chelsea.

Ater the first month of Saddlepals, his volunteers were coming up and telling me how amazing his progress was. The coordinator confided in me that Joseph's volunteers were in love with him. When we had to switch our shift, all the volunteers switched too so that they could still be with him.

And yes, he is making progress, and yes, he is cute. But I watch Dan, who is 12 and who is more seriously impaired than Joseph. I watch him up on that horse, flapping his hands and making that cooing sound that only autistic people seem to make.

I go over to say hi to Dan's dad, who I know casually because we've attended RDI classes together. He opens his mouth and out comes worry after worry about his kid. First it's about horseback riding: he's been at this for 5 years now and he's LOUD on the horse. Shouting is not allowed on a horse, so he gets taken off a lot. And he moves around too much and gets taken down for that, too.

I look at Dan's volunteers. They are strong and firm with Dan, and there is a harshness to their voices and a hardness in their faces. It is hard to love Dan. It is hard to even like Dan, and I am sure that the volunteers have tried. And I wonder, did they love Dan when he was little and cute?

Dan's father goes on about how incompetent Dan feels, and how he dreads failure so much that he seems to sabotage himself just to get failure over with.

It is tough, this thing called autism. And, though Joseph won't ever be as impaired as Dan, he won't always be so small and cute, either.

Although the volunteers attending Dan are hard-faced, Dan's father is not. Dan's father looks as though he is being tenderized by the Almighty Tenderizer. His face reflects his heart -- soft, vulnerable, open, afraid and trusting.

Joseph's future is one of those things I both worry about and lay at God's feet. How can I know what his future will be like?

I take a deep breath and come back into the present. He is so cute, so sweet and so happy. Some of those higher-functioning autistic kids are so cute, and he is one of them. Thank you, God, for that.

And thank you for this moment. I will endeavor to stay in it.

On Non-Attachment

Ok, so now Joseph is doing so much better. He's done one of those leaps in development that are very exciting, especially for parents of special-needs kids. His teacher tells me that, at circle time today, Joseph shared excitedly about last night's thunderstorm. In previous circle times she had tried to get him to share, but he'd only answered yes or no in the quietest possible voice. So this was exciting.

But it's not only this one isolated incident. It's his whole beingness -- he's so present and engaged. He's also getting feisty and insisting on what he wants, which is new for us and creates a whole new parental dance.

Now. In yoga there is a huge emphasis on non-attachment -- on being so centered within that no external condition can pull you away from your inner peace.

I used to be pretty good at this. Then I became a mother. Then my kid was diagnosed with autism. Now I find that, especially when things are going really well with Joseph, I get so happy. Like, pulled-out-of-my-center happy.

And I wish it wasn't so. I wish that my connection was more with my inner joy. I wish that this external condition, which will always be fluctuating somehow, was not so strongly affecting my internal environment. I don't like riding the emotional pendulum.

But what a strong practice it is. God is obviously chiseling me according to his perfection, and I get to see where my "lack of perfection" still lies!

And, in my own defense, we parents are obviously given a heaping dose of attachment to our children -- by that same divine force that is chiseling away at my imperfections.

So I am quite content to watch the whole thing closely, and learn by watching, and hold it up in prayer and meditation, and have faith that life is unfolding just as it should.

Friends

Joseph is five. It's just hit me recently that, when I was five, my best friend meant everything to me. I lived and breathed Gina, as she did me; we were -- to borrow a phrase from Mr. Gump -- like peas and carrots.

And now my kid is five. He has no best friend. He has an occasional playdate, and he has kids at school who are slowly figuring out how to interact with him.

But he has no friends.

He has autism.

And, as much as I like to stay optimistic and cheerful and think that it's going to work out, sometimes the realization hits me like a punch in the stomach. My god, he has autism.

At five Gina and I were confidently exploring the world. We talked endlessly about the giant who lived in the forest behind my backyard. Once we even found his footprint. We froze in the snow waiting for our sisters to get out of school and had to go to a neighbor's for help. Our imaginations ran wild, dancing, swirling and feeding off each other. There was no place we couldn't go when we were together.

Joseph doesn't have that. Any of it. No child calls us to say, in that lilting, timid voice, "Can Joseph play?" We didn't even bother to attend the last time we were invited to a birthday party, because the concept of Joseph trying to cope in a new house with new kids was just too much to face.

Some five year olds are starting to sleep over at their friend's homes, and their parents get a night to themselves.

Not us. We have autism.

But I'll try to stay cheerful and optimistic. Maybe I'm just a little low tonight. Maybe, if we keep working on it as crazily as we have been, it'll turn out better than I think.

I think now I'm going to try not to think. It's not doing me any good tonight.

A sick boy

You know that autism is a weird disorder when you're relieved that your kid is sick.

We work so hard to help Joseph (he's 5) bridge those autism deficits: social skills, emotion sharing, referencing (via eye contact) and more. And we've come a long way.

One of the odd things about this particular parenting journey is that you obsessively pay attention to every change in your kid, even every nuance of change. And one thing we've noticed lately is more interest in other kids. Joseph's been eager to hang out with kids at playgrounds and at preschool -- he'll imitate them and begin to join in on their games.

This has been very exciting. His preschool teacher promoted him socially from an early 3 year old to a mature 3 year old. I can't tell you how good it feels to see him run toward kids instead of away from them -- to see him smile with delight when another kid shows up when he used to just scream with fear.

So. Today, at the playground, Joseph wanted nothing to do with the other kids. He wanted to be there, but he played separately, away from the others. It finally culminated with him screaming up on one of the playsets when the kids were around him. I had to intervene and take him away.

Anyone touched by autism knows the fears that come up: Has he regressed? For good? What the **!!&% happened? Did I feed him gluten or something? The mind jumps ahead to one's child at 21, or 31, or 71, never having made a friend, always alone and isolated.

But then we got home and I noticed, hmmmm, his forehead is a little warm. I take his temperature, and, sure enough, he's got a fever of 101. Phew. What a relief. It's not regression -- he's just sick.

See? Autism does crazy things to a parent's head.