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

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

And Then There Was Public School.

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

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

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

Until recently.

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

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

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

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

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

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

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

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

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

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

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

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

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

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Joseph had surgery this past Tuesday. In a delicate area. Ok, ok, I’ll tell you: he had a medically necessary circumcision.

I was, naturally, nervous about this. But my nervousness increased a lot when a friend reminded me that there was a lot of debate about general anesthesia and the toxicity it caused in children with autism. In particular, the use of nitrous oxide has been heavily debated in autism forums and websites, and there is concern that it can make an abnormality with folate (something many autistic people have) even worse.

So Blue Eyes and I hit the books — er, internet — to do some research on anesthesia. We discovered a lot of information, including an article by an anesthesiologist nurse with an autistic child (http://www.autismone.org/content/anesthesia-autistic-child-sym-c-rankin-rn-crna) that spoke particularly about which anesthesia was better for kids with very sensitive systems. It said to make sure your anesthesiologist understands that autism is not  simply a behavioral thing but a physiological condition, and that it needs to be treated as such.

We liked the article so much that we printed it out for Joseph’s anesthesiologist to refer to. We wrote down the types of anesthesia that we felt comfortable using.

But on the morning of the surgery, when we actually got to meet the anesthesiologist, he was arrogant. He told us that the article was anecdotal, that he knew what he was doing, that we could either do it the hard way (our way) or the easy way (his way).

Sigh. I know all doctors aren’t like this, but why are most of them like this? I was on the verge of demanding another anesthesiologist, but I held my tongue. Instead we stood up to him, as we have learned to do in the past few years, insisting that we work together on the drugs that would be given, and not given, to Joseph.

After all, isn’t “anecdotal” the way everything got decided before we developed an obsession with facts? And how do you get facts if no one is doing the research?

Blue Eyes and I had to be willing to go into the discomfort of disagreeing with an “expert.” We had to go on the edge of rudeness, insisting that our needs be taken into account. It took some discussion, but eventually the doctor agreed not to give Joseph nitrous oxide, and we all agreed on what Joseph would get.

This experience was very different from my emergency c-section. When that happened, we gave all our power away to the doctors. Whatever they thought was best was what happened. To this day, I still think it was all those antibiotics that caused Joseph’s already-compromised immune system to tip over the edge into autism.

Do you know which is the very best yoga posture? Standing on your own two feet. This is one of the things having a kid with special needs has taught me to do. Joseph got through the surgery beautifully and is recovering without any visible signs of trauma (other than the, well, obvious one).

We all play roles on this planet. The anesthesiologist got to play arrogant doctor, and I got to play insistent, determined parent. But I can’t help but think that, if insistence can decrease arrogance in the medical profession, then we need some more insistent parents. We need to arm ourselves with information, stand in our truth, and yet be open-minded to the doctors’ input. It’s an interesting balance.

Perhaps, if standing on your own two feet is the very best yoga posture, it’s those balancing postures that come next.

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.

Joseph just woke up. He came in and said, “I had a good sleep. It’s morning time now.”

RDI calls this “reporting”: telling us what’s happening in one’s life just because it’s nice to share. We’ve never had this before. I’m loving it.

Previously it’s been hard to get even a snippet of information from Joseph, especially because, RDI style, we try not to ask a lot of questions. I might say, “I bet school was fun today…” and wait for his response. Even short responses have been a rare blessing.

But in the past week he’s become a chatterbox! Yesterday he and Blue Eyes came home and Joseph jumped right in, telling me how they’d gone to a new restaurant and how much fun he’d had there running around. Also, now when he does imaginary play, he narrates the whole thing.

People are finally and firmly becoming a part of  his play. The mom and dad and their two boys are lining up to get on the train — oh, and their baby — and now they’re getting off and going home to bed…

Or a firetruck screams up to the fire, the front door opens up and a firefighter comes out. His name is Yozin, I’m told, and Yozin gets busy climbing ladders and breaking windows to save the burning house.

It used to be only about the trains. Or the firetrucks. People were never a part of the picture.

More has surfaced than that. The locking of eyes and shared smiles. New expressions like, “I’m being funny,”  Important little things that I never noticed weren’t there before: “Ummmm…” (can you imagine never saying “Um?”), “Owww!”, that kind of thing. All said very appropriately.

He’s saying our names, including them in his sentences, using them to get our attention.

Socially, Joseph seems to be getting how to play with his peers. For instance, we were in the pool the other day with a little friend. He turned to Joseph suddenly, said, “Ready, set, go!” and swam off for the other side.

Joseph immediately got it and raced after him. When they reached the other side, he turned to Chris and said, “Ready, set, go!” right back — and off they went again.

This is something we worked on in RDI a while ago: seeing the pattern in things, being able to join in and then to add (and adapt to) variations. But to see it happening, dynamically, right before my eyes is no less than miraculous.

Words cannot express.

In my opinion, we owe much of it to Valtrex. Hard work, gut health, RDI too — but Valtrex is the new kid on the scene.

Joseph’s been on it for 6 weeks now. Our educated guess was that he had an undetectable virus running in his system and that Valtrex, an anti-viral, would address it.

This seems to be exactly what’s happening. It’s so encouraging! It is like watching a miracle unfold, slowly but surely.

Joseph’s preschool teacher tells me she’s giddy with his progress. It’s time for his semi-annual assessment, but this time she’s putting aside the special needs assessment and using the typical one. It’s more relevant now.

My heart is daring to hope just a little bit more. Parenting is actually starting to be fun.

My little boy is blossoming, and it is by far the most beautiful flower I have ever seen.

vitamin shotThe 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.

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 that, as far as Joseph goes, poop happens.

Finally.

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.