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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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The Way of the Peaceful Warrior is one of the books that turned me toward the spiritual life in my twenties, so it was with pleasure that I accompanied Blue Eyes to a talk that its author, Dan Millman, gave recently.

I found that every time Dan discussed being a warrior, my mind flashed on autism. When he talked about life’s waves crashing over us and pulling us down, I saw how it happened to me with autism.  And when he spoke of the concept of effort over time, I perceived it in light of Joseph’s, and our, journey with autism.

You know how you attend a talk or read a book and, if it’s a good one, you leave with one or two gems that provide clarity and direction for you? Effort over time is such a gem for me: the idea that effort, consistently applied over a good amount of time, will make more difference in one’s life than almost anything else.

I think about all the effort we put in to help Joseph’s gut problems (chronic constipation, leaky gut, candida). For 3 1/2 years he was gluten- and casein-free. He took medications and supplements, sat in oxygen chambers, suffered through glutathione shots, and –worst of all — screamed bloody murder during every-other-day enemas. It was pretty much hell on earth for all of us. But it was this effort over time that has made him the healthy boy he is today.

Then there’s RDI, the behavioral intervention we’ve been involved with for about five years. One of RDI’s slogans is It’s not a sprint — it’s a marathon. In other words, effort over time. Regular homework assignments for us parents, which include reading, learning, creating video footage of us working on objectives with Joseph, and constant incorporation of the principles into daily life. Endless discussions with our RDI Consultant, who runs the marathon with us and hands us water bottles and power bars to keep us going. Effort over time for sure.

There’s also nasty stuff, like the fact that I got so traumatized by Joseph not sleeping for four years that, three years after that difficult period, I still can’t sleep well myself. If Joseph gets up in the night to use the bathroom and I hear him, adrenaline still shoots through my body and I wake up, terrified. Recently I asked Blue Eyes what else I could do to resolve this problem and I loved his answer: Effort over time.  Oh yeah. Patience, Yoga Mother. The trauma didn’t come in a day and it seems to not be leaving in a day. But don’t give up — it’s effort over time.

Joseph being goofy

Joseph has come so far that it’s like a good dream. Earlier today I spoke with the mother of one of his classmates, and she said her daughter has a huge crush on Joseph and wants to marry him. Could I have imagined anyone saying this four years ago, when Joseph would rather stim than interact with someone? Absolutely not. It’s due to effort over time — ours, his, and the support team we’re surrounded by. Oh, and grace. Lots and lots of grace.

I know that some of you who read this are early on the autism journey. You can’t know if your effort over time will be worth it, and believe me, I know how much effort it is. It drains your life force, ages you beyond your years, takes away your life as you knew it, and threatens your sanity. But really, what choice do you have? Amazing effort now might help your child reach his or her full potential, and if you don’t do it, you’ll never know. Today is Superbowl Sunday and I watched a little vignette of huddles of football teams getting motivated before previous Superbowls. In one huddle the quarterback said, “If it works, it works. If it doesn’t, it doesn’t. So let’s just go and do our best.” Indeed. What else can you do?

How then can we approach autism, or any major trial in our lives? Effort over time, doing our best, and — if I might add one more concept — letting go of the fruits of our labors. We can control our efforts but we can’t control the results. We simply can’t, and it’s crazy-making to pretend otherwise.

I love where Joseph is now — and yet, as his peers grow older and more sophisticated, he well may not be able to keep up. Crushes on him may turn to laughter at him. I will continue my effort — that’s my business —  and I will do my best to let go of the results, because that’s God’s business.

To be honest, I’m not so great at letting go; I just plain like to be in control. So I continue to work on it, hoping to land in the body, mind and soul of the Spiritual Warrior I strive to be. This Warrior has great focus, puts in major effort over time toward a noble end and, at the same time, lets go of what that end might be.

Will I ever really become that Spiritual Warrior? Perhaps the effort alone will transform me into her. Then again, perhaps it won’t.

I’ll just do my best, pray that it’s blessed, and let God take care of the rest.

I had a Skype session yesterday with John, our RDI consultant. I took notes as he spoke about the playdates Joseph’s been participating in. Somehow the subject of weirdness came up, so I jumped in with something that’s been bothering me lately:

Joseph likes to be weird.

Howling on the playground

We’ll be walking up to his classroom in the morning, students of all ages around us hurrying along, and Joseph will suddenly stop, look up at a pretend moon, and howl.

At full volume.

Kids turn and look.

I’ll whisper, “Joseph! If you do things like that, the kids will think you’re weird. They won’t want to be your friend!”

Joseph will laugh delightedly and repeat, sing-song like, “I’m weird. I’m weird.”

John listens to my concern, his face imperturbable. Then he tells me that, when it’s a full moon, he goes into his backyard and howls at it. John lives in a suburban neighborhood, and all his neighbors recognize his howls. His wife hates it, his children love it, and every full moon he does it.

Joseph is just weird, he tells me. He sees him growing into a teenager who is funny and smart, who can be really goofy with his friends.

All along I thought this was autism. This ability to happily be different from other people — to try, even, to get them to think he’s weird. John’ says it’s not autism. It’s Joseph’s personality — autism or not.

This is just another reason that I love RDI. Having someone to check in with on the little things and the big things. Getting an expert’s perspective — especially an expert who knows our boy, and our family, really well.

Not just any expert, either. An expert on RDI, which stands for Relationships Development Intervention, and which focuses on development in dynamic real life — not in some contrived, forced situation, like another popular intervention.

For years I’ve been coveting the RDI stage where Joseph could be in a dyad, playing with another child under John’s tutelage. We had to get all the necessary developmental skills in place before Joseph could qualify — how do you play with another person if you don’t understand how to co-coordinate an activity, for instance — and now we’re finally there! There are many stages to a dyad, and John is positive about how well Joseph is progressing through them.

Some people take their kid off of gluten and the autism goes away. Some people use homeopathy, or glutathione shots, or oxygen chambers, or another of the million and one cures for autism — and suddenly they have a neurotypical kid. That hasn’t been our path. A lot of the things we’ve tried have helped to some extent, but on our long, slow route to helping Joseph achieve his full potential, RDI stands head and shoulders above the rest.

The closest analogy I can give for RDI is Annie Sullivan, Helen Keller’s teacher.  Like Annie, RDI comes right into your life, reaches into a child’s isolated world and gives him/her meaning, connection, and a way to grow.

To stretch this analogy just a little further, RDI actually coaches parents into being their child’s Annie Sullivan. The intervention is parent-based because the parent-child relationship is, or should be, the strongest relationship there is.

This can be frustrating. In many ways I would  prefer to let our RDI consultant, John, do the Annie Sullivan thing. The ego wants the easy way out, after all.

But the soul seeks to grow. Despite all the hard work and the many times I want to give up, I am coming to understand much from RDI about autism and how to help Joseph with his particular challenges. For this I am eternally grateful.

mud hat

I love that John thinks about the teenager Joseph will grow to be. That he sees him having friends in this future time. He coaches us to raise Joseph to be a good husband someday, and I love that he doesn’t limit Joseph from friends and marriage because of autism.

I’m starting to delight in my son’s weirdness. It’s an ability to think and behave outside the box. It’s creative and silly and fun. Like John, I’m enlarging my vision to see Joseph’s future friends admiring his weirdness, enjoying being crazy and funny together. And maybe, further out, a wife and children with whom he can be his own howling self.

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.

green striped jammiesThe title of this post comes from the movie Groundhog Day. Remember that movie? Every day it’s the exact same thing, for God knows how eternally long. Then, finally, one day it’s different — and Phil says, “Anything different is good.”

Blue Eyes and I have been quoting this line to each other ever since the autism diagnosis. What is it in these kids that makes their minds get stuck on something?

RDI labels inflexible thinking as one of the top five  deficits of autism. Joseph doesn’t have it to extremes, but we do see it.

For instance, Joseph has had these words that he wouldn’t say. Refused to say. There seemed to be no rhyme or reason to why he chose these words not to say.

Those words were: coffee, Aunty Wendy, Kristin (a girl in his preschool), trick or treat, and ambulance.

He also gets stuck on clothes. Last winter, for example, Joseph loved his flannel railroad jammies with the long sleeve shirt and long pants. He got so stuck on them that he insisted on wearing them every night during the hot (as in 90-100 degrees F) summer. If you scan through this blog, you’ll see him in them in several posts.

But here we are, 3 + months into Valtrex (anti-viral — see biomedical posts). At first, the Valtrex Joseph sprinted out of the gate, leaving the old Joseph in the dust. We hit a little regression here and there and then, most recently, a plateau that lasted a couple of weeks. We considered taking him off Valtrex…wondered if it was time…

But now he’s got a second wind. When we first started the Valtrex we saw the most changes in vocabulary, eye contact, use of names (finally), that sort of thing. This time we’re seeing what I officially call Unstuckness.

Unstuckness.

Note the photo at the top of this post. This is Joseph in his green-striped pajamas. He has worn these now, on his own initiative, for two nights in a row. Blue Eyes and I almost fell over when he walked into the kitchen wearing them.

He’s choosing other new clothes to wear, but it doesn’t stop there. He’s saying those words — after more than a year! All of them but ambulance, and, in truth, he is pretty darn scared of ambulances and the noise they make, so “white thing” is a safer substitute.

And, hey, how about this: he answers people when they say hello. He tells me, “I can do it myself!” He is thinking carefully about choosing the right pronouns before he says them.

I happened to get Joseph’s last swim lesson on video. There is a great moment where he jumps in the pool and then tries 3 times to get the teacher’s attention in order to acknowledge how well he jumped. He finally gets her attention by saying, “I did it!” loudly and with pride.

I sent that footage to my RDI consultant, who responded that it brought tears of joy to her eyes. Tears of joy in our consultant is very different — and very good.

So, to those of you who are going through the agonizing monotony of sameness, I say hang in there. I know the physical and soul weariness of that inflexible thinking. But don’t give up on your kid. Amazing things can happen, if we can be resilient and open.

Anything different is good. And when it’s good, it can be R-E-A-L good.

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.

Autism and Spirituality: the Dance

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