Emotional Fallout

I have been working on a post for awhile now about the emotional strain on autism parents, especially those of us who choose to try to heal our kids.  How we have been found to have the same level of stress hormones as soldiers in active combat, how we often develop PTSD (Post Traumatic Stress Disorder) from watching our children regress into autism and struggle.  How we become isolated as friends and family walk away or turn their backs on us in our time of need (some do choose to stay and we are SO grateful to them), because we are "crazy" and we just keeping talking about autism, because autism changes us and places demands on us that others say it shouldn't.  How our dedication to helping our kids is used as evidence that we are mentally ill and the genetic source of our kids' neurological disorder. 

We are society's new leppers.  We are reviled by so many, and people avoid us like the plague- pretty much literally.  Journalists, public health officials, government officials, doctors, school employees, talk show hosts, etc single us out as society's punching bags.  It has become a regular pastime of these people to metaphorically put us autism parents (who are written off as anti-vaccine propagandists) in "the stocks" and throw rotten tomatoes at us for sport.  We are easy targets.  We are tainted with the stench of not believing everything we are told by Those Nice People In the White Coats and questioning authority, and people who are comforted by the message "nothing to see here, move along.." turn away from us in disgust lest our taint contaminate them and pull them from their denial.  It sounds harsh I know, but as I've said before...welcome to my world.  If you doubt me go look at the comment section of any editorial or article that suggests autism may have biological causes, and that those causes are likely environmental toxicity.  You will see a parent or "quack" being rhetorically ripped limb from limb.

But I will write that post another day (or maybe I just did?).  Today it is much more personal.  Today a perfect storm came together and put a crack in the wall that holds back my deep wordless sadness and anger for what has happened to our family and other families like ours and what we have all lost.  When we were in the thick of it, working to heal our son, I was in "fight mode" and a part of me knew that I didn't have the time or resources to deal with the intensity of my feelings.  That part of me knew I needed to focus on my kids' and my own health, and it set those feelings aside behind a wall to be dealt with later when I had the space to do it.  I've been keeping us very busy since Roo reached recovery earlier this year, partly to focus on enjoying what's left of the kids' childhoods but I also realized this morning because I fear looking at those deep dark feelings.  I'd rather keep myself busy and distracted then unpack that baggage. 

The first chink in the wall happened when we set in motion the process of selling our house this week.  I was surprised to find myself paralyzed by anxiety when faced with calling the real estate agent.  When we bought our house 8 years ago, we were a young family with two small children with all the exciting possibilities of childhood ahead of us.  Within months of moving into this house, one of those possibilities, that we hadn't considered, manifested when Roo regressed into autism.  Over time the house slowly fell apart around us as all the money that was going to fix it up "all nice and cute" (or at least keep pieces of the ceiling from falling down and the doorknobs from falling off) was redirected into health costs that weren't covered as we tried to figure out what was happening to our children.  8 years later, autism has taken a financial toll on us that means we can't afford this house anymore and it is time to move on.  We are quite lucky compared to many other special needs families in that we are at least not being foreclosed on, an insult added to injury that has become almost a rite of passage in this community.

This house, and this neighborhood are haunted by autism for us and it does feel like it is time for us to move on emotionally too.  I've been looking forward to getting out of the house for a long time, and was completely broadsided by the feelings of grief and anger that moving forward brought up in me.  This was the first chink in the wall, the next came from my 4 year anniversary this week of the  "cardiac event" (mild heart attack) that marked the onset of my own neuroimmune disease ME/CFS.  This week a friend won a lawsuit in regards to her son's autism that reminded me of the massive scale of what is happening and is preparing for the next stage of the fight.  I was told by a "vaccine advocate" that "I hope you have a baby and it dies", which is pretty par for the course and just goes to show how much these people are motivated by concern for the safety of infants.  This week I spent $500 on supplements (to last for months) that we need to counter the damage that the mercury in our bodies is doing to us.  I also had a wonderful conversation this morning with Roo and listened to him make a new friend over skype while playing online.  What we do is worth it and I would do it all again but at the same time the check for the emotional fallout has come due.  God help me.

The View From Recovery Land

This post has been in the works for quite a while.  I have anticipated writing it for so long, and there is just so much to say that it's hard to know where to begin.  For a long time, as Roo inched closer to being recovered from autism, I would tell people that recovery was a process...a big grey area, not a finish line.  Then, one week in February, things felt different and I realized that we had crossed a finish line.  He was there.  My whole body took a deep breath and I had the image of myself laying face down on the ground out of both relief and sheer exhaustion.  I announced that I would be on staycation for the rest of the year.

I had spent pretty much every moment, every bit of energy on solving this thing.  I had been fighting constantly trying to beat the clock.  So that day in February I took a walk around the neighborhood, and looked at people's gardens.  Because I could.  It was warm and the sun was out.  I saw people approaching on the sidewalk and for a moment I had the urge to share the amazing news.  MY CHILD HAS RECOVERED FROM AUTISM.  Not long before, I had been washing my hands in a public bathroom when a very elderly lady with a huge smile approached me and told me that her granddaughter had just given birth to quadruplets.  Her joy was beautiful to see, and I was happy for her blessing.  I realized in that moment on the sidewalk that my joy was not one that the world around me was ready to share.  It is too politically loaded and inconvenient. 

Recovery means many things, but it is not the end of the isolation.  We now pass for a "normal" family, whatever that is, but we are not.  And we never will be.  We have been to hell and back.  The "and back" part means that we don't really fit in in the autism community quite the way we did before.  It's an odd feeling to feel that we no longer fit in with the outcasts that autism parents are, and to mourn that.  I remember my last night at the autism parent support group that I had attended for several years, a place where I had finally felt so understood, but on that last night I knew I no longer belonged there.  My joys and sorrows were no longer understood there.  I felt so lonely when I joined the "autism club" so I was shocked at how much more lonely it felt to leave it.

If there is one thing I learned from the autism journey, it's how to strike out into the uncharted wilderness and find my own way without any trail or guidebook.  I would just do it again.  I did what any self-respecting autism mom would do, and started a support group, but this time for families of recovered kids.  There are many of us and the wilderness became less lonely.  We are a group who have worked harder than we ever thought possible, because the only thing harder than healing autism is not healing autism.  We know how lucky we are, we know that many families will never get here no matter what they do.  We have known the horror of watching our babies slip away, and been humbled by the joy of seeing them return.

Every day is an emotional rollercoaster.  I take nothing for granted, I still stop in my tracks when I hear Roo using pronouns correctly, asking "wh" questions, when he chooses to draw a picture or eat something new.  Every success no matter how small is a monumental victory and I relish it.  When he is playing with a friend, sometimes I just stand and listen.  Sometimes I find myself wondering if maybe the autism never happened at all.  Maybe it was all just a terrible dream.  I look at how wonderful things are in that moment and I can't imagine that they were ever so bad.  And then, just as quickly, a memory is triggered and I know how bad it was.  I can't breath or talk and I fight to not cry.  I know it was real and that there is a pain inside me that will always be with me, that time will never mend.  The days are filled with wonder and beauty but they are also minefields. 

Autism (and my ME/CFS, from which I am now also mostly recovered) means that we can't afford to keep our house.  Losing a house is almost a right of passage for autism families.  I suppose it's a fitting end to this journey.  Roo regressed within months of us moving into this house, so now it is time to move on.  It's time for us to focus on another kind of healing in which we go back out into the world and have adventures and fun just because we can.  As much as events in the day feel like an emotional minefield, our neighborhood is also one.  When I sit on the bench at our neighborhood park, I am taken back in time to that fall day when Roo's inconsolable toddler meltdown signaled the beginning of a long hard journey that he and I did NOT sign up for.  I am haunted by these memories and welcome the chance to move away and leave them behind.  It's a sad fact that I would rather forget most of his childhood up until now.  I also intend to make the most of what childhood he has left.  That will be the ultimate victory.

Why I Never Mourned for Roo

I recently saw a discussion of a book written by the father of a boy with autism in the New York Times.  The author has been asked whether he mourned for his son when he found out that he has autism, as many parents do.  It seems to me that this is generally considered to be a healthy (if not necessary) response by parents in order to adjust and accept their child.  This is such a common question and topic for autism parents, but for some reason I had never thought before about whether or not I had done this.  I haven't.  I tried to explain my reasons in my response, which I have copied below:

I love the focus this author has put on connection with his son.  Connection has been my primary goal all along with my son who is mostly recovered from autism.  Mourning isn't the right word for how I felt when my baby's shining and outgoing personality faded away after his first birthday when he regressed into autism.  I was terrified that we may never see that incredible personality again, that personality that we had fallen in love with.  I felt angry that the negligence of others led to my child being injured in such a way that he lost the ability to communicate and spent his days screaming from physical and emotional agony.  I place no value on "normal" and never mourned the loss of it, but I did shed many tears over my child's unnecessary suffering. 

He wasn't gone and I knew that if we could figure out what had happened to him, what had caused his autism, he would shine again.   I've always known that the autism was not "who he was" but "something he had".  With research and medical help we discovered what was at the root of his autism (mitochondrial dysfunction and immune suppression that led to neuro-inflammation and viral encephalitis among other things).  As we healed his body he has always been free to be however he chooses.  He chooses to be socially outgoing, playful, and engaged in the world around him.  All of those amazing abilities of his?  He has them even more- they were never part of the autism, they are his. 

We encourage him to define for himself what his autism has meant for him.  Still, as his body has healed and his abilities have come back, he has embraced them.  His autism symptoms were never something he chose.  Recovery has never been about changing who he is, it's been about removing barriers to him becoming who he wants to become.  Now the world is his oyster and I can't wait to see what he makes of it.

The GAPS Diet

I have been wanting to write this post for a very, very long time.  We began the GAPS Diet (GAPS stands for Gut and Psychology Syndrome) almost 2.5 years ago and the difference that it has made has been unbelievable.  So unbelievable in fact, that writing this post has felt daunting, so I will keep this one simple and add more bits and pieces later.  The diet was developed by Dr Natasha Campbell-McBride, who has done advanced work in both neurology and nutrition, and those are two great things that really go great together.  The diet itself is based on the principles of the SCD (Specific Carbohydrate Diet, I'll do a post about that one too), but it brings in a lot of other pieces and is actually more of a protocol than just a "diet".

The basic premise of the SCD is that diseases of the GI tract, such as Crohn's Disease and Ulcerative Colitis, are due to an overgrowth of pathogens in the gut, and the solution is to starve them out by avoiding polysaccharides (starches and sugars aside from some honey, which is a monosaccharide).  The SCD has been widely used to address autism because of the importance of gut health for neurological health.  The GAPS diet takes that principle further, most notably by focusing on the importance of probiotics and fermented foods to restore gut health.  The GAPS diet also has a much longer and more elaborate "intro" period that, while optional, significantly boosts the diet's effectiveness.

While both the SCD and GAPS can seem overwhelming to start, many families have been able to make them work and have seen tremendous progress not only in their children with ASD but in other family members as well.  It is common to hear that a brother's ADHD was healed, or a sister's asthma, or a mother's depression while they followed the GAPS diet along with their autistic family member.

Roo had been GF/CF for 3 years before we begun GAPS, and during that time we had incorporated many other principles into his diet as well, including avoidance of IgG allergens, low sugar, organic when possible, avoidance of the very highest oxalate foods, and low histamine.  Even though he had done well on those diets he still made immediate and dramatic progress on GAPS.  Within several months he had gone from showing very little interest in other children to being socially outgoing.  His language jumped forward.  He was much more "present".  It was as if a curtain had been lifted and he was more able to interact directly with the world around him.  Most importantly he was so much happier- he literally developed a spring in his step.  He would literally skip down the sidewalk, waving to and greeting people as he went.  It was as if he "woke up".

After about 9 months on the diet, Roo surprised us all by losing his extreme dairy sensitivity.  I lost my IgE allergy to dairy- that I've had since childhood.  We are no longer acutely sensitive to high histamine foods and ate them freely this spring despite it being a record year for pollen (we did have some minor histamine effects, but not worth altering diet for).  Perhaps the most surprising of all is that Roo began to tolerate accidental trace exposures to gluten.  In the past, even a trace would send him into a tailspin for 6 weeks.  We were shocked when several weeks ago he actually ate a sizable amount of gluten and had absolutely no reaction to it.  I have been blown away by the healing power of this diet.  Personally, it has helped me reduce my ME/CFS symptoms, and made my OCD and major anxiety mostly disappear.  My head is a completely different- and much more pleasant- place to live!

Here are some basic GAPS resources for you:

Dr Campbell-McBride's GAPS site

The GAPS Diet:  Natural Digestive Healing

GAPS Help Yahoo group

GAPS Guide:  Discussing a Program to Heal Bowels, Body and Brain

Grain-Free Foodies (GAPS recipes by a friend and I)

The Internal Bliss Cookbook (featuring recipes by me!)

A Change of Paradigm

I was first introduced to autism about 16 years ago when I took a job as an ABA therapist.  It seemed like an interesting enough thing to do- I had no idea that the experience that I gained over the 5 years that I worked with kids with autism would end up being so personally relevant, and so painfully ironic.  It's not the specific skills that I learned that have been helpful- my perspective about ABA has changed over time and I have chosen not to use it with Roo.  What I have found helpful is what I learned on a more philosophical level.  I learned that kids can and do recover.  I learned that even a seemingly small improvement in abilities can have a profound change in the quality of life of a person with autism.  I developed an intimate familiarity with autism that allowed me to see past the strikingly different behaviors that lead so many people to view people with autism as so fundamentally alien to see them instead as truly whole people who are more like the rest of us than not.

However, there is one very fundamental way that my perspective of autism has changed dramatically.  Central to the ABA approach is the idea that autism is a deficit of skills that need to be taught.  As I learned more about the biological side of autism, I saw this in terms of injury that limited the person's ability to learn "naturally" from his or her environment the way that neurotypical children do.  I saw the biological underlying causes of autism as resulting in skill deficit.  However, there have been times that Roo has demonstrated new abilities so quickly after introducing a new intervention, such as anti-viral therapy, that the old model just didn't make sense.  How could he have learned so much language so suddenly?  I have now come to see the biological aspects of autism not as causing deficits in learning or abilities, but rather as suppressing abilities that are there.  This is the only explanation that fits my observations.

The speed with which Roo began exhibiting such advanced social abilities after beginning the GAPS diet was simply unbelievable.  Once I made this paradigm shift, it suddenly became obvious that his anxiety had been so intense that it had suppressed abilities that he had already had.  Once the anxiety was lessened he was free to let his social side shine.  I felt so sad wondering how long these abilities had sat latent in him.  It's almost overwhelming to think of the potential that is hidden inside so many of our kids, what they would be capable of if we removed the barriers that keep these abilities hidden.  I have been struggling to find a way to articulate this paradigm shift, thinking that I am alone in this idea, when I just came across the synopsis for Martha Herbert's presentation at the upcoming AutismOne conference later this month.  Here is a quote from it:

"Physiological research and observations are increasingly contradicting the conventional view that autism is a purely genetic and hardwired set of deficits. Systemic and brain metabolic and immune changes, regression, transient and persistent improvement, and remarkable brilliance even in some who can't talk, all suggest that "autism" may arise from an interacting web of physiological problems that create obstruction of function or obstruction of expression rather than deficient capability. "

I want to repeat that last part, because it says what I've wanted to say so perfectly- "suggest that "autism" may arise from an interacting web of physiological problems that create obstruction of function or obstruction of expression rather than deficient capability. "  Thank you Martha.  It is so much harder to write off our kids when you see them that way.

Redefining the Role of the Patient

One of the themes that is shared between my family's experience of ME/CFS and our experience of autism is a need to change the way that we have related to the medical system in the past in order to find and receive meaningful help.  When I was much younger, I used medical care the way that most people still do today- I saw the doctor as the expert and I would go to them when I thought I had a problem to see if I actually did and to find out what to do about it.  They had special training and charged a very significant amount of money on the basis that their input was very valuable and could not be found elsewhere.  This made sense to me, so I would dutifully follow whatever advice I was given.  I didn't think to question it or do my own research because how could I, someone with no medical training, ever understand what they were talking about?  Later I would discover the discipline of Medical Anthropology (and even later, that of Medical Sociology) and come to see my earlier beliefs in an entirely different light.

When we took Roo in to begin the evaluation process when he was 3 it became clear to me very quickly that these people did not have the information that we needed.  They were engaged in an elaborate semantic exercise regarding exactly what to call "what he has" without focusing on the realities of those symptoms.  I saw right through the diagnosis dance that all the show was a smoke screen for the fact that they really had no idea what had actually happened to my child and what exactly needed to be done to help him.  They ended up recommending Occupational Therapy and Speech Therapy, which is what they would have done pretty much regardless of the diagnosis.  Seeing as he had intense sensory processing difficulties and no language at all at this time this hardly seemed like rocket science.

Once the facade of expertise was cracked it fell away pretty quickly.  They couldn't tel me *why* my child had such disordered sensory processing capabilities or *why* he had no language.  He did not have these issues in his first year before he regressed, so why did he have them now?  WHAT HAPPENED TO HIM?  Before we even had him evaluated, our family doctor had suggested that he may have food allergies.  She had no suggestion of what they might be and we did not want to subject Roo to painful testing if not necessary.  We put him on the gluten-free, casein-free diet honestly as a wild guess and within one week he had said 30 words and his regression had halted.  Once we began the speech and OT these therapies had an almost imperceptible benefit if they had any at all.  So, from the very beginning, it was clear that if we were going to find things that were going to really help Roo we would need to take an active role in seeking those things out ourselves.  The experts did not have the answers.

This experience has been mirrored in my own health.  While the experts debate whether or not CFS (Chronic Fatigue Syndrome) is real, or simply the delusional claims of mentally ill patients, I've done my own research into what my symptoms may mean and what I can do to address them.  What I've found in both this context and in the case of autism is that other affected people are generally the best source of information because we are the most motivated to move beyond the stifling political overtones of these disorders and get to the point where real, open-minded research can lead to real results.  Affected people and their families *know* that these disorders are real and get no benefit from the endless repetition of tired dogma.  What is especially ironic about this is that all it takes is asking the question "what could these symptoms mean if we view the body as a biological entity?".  It has taken me a long time to realize that in the context of conventional medicine this is actually a revolutionary concept. 

I was excited when I found this TED talk about just this subject- redefining the role of patients in their own treatment.  The speaker says that patients are the most under-utilized resource in health care today and ends with the mantra "let patients help!".  I would go one step further and say it's not patients who should be allowed to help doctors, but rather doctors who should help patients. 

SPEAK supplement from NourishLife

Thus far I haven't been blogging about specific supplements or specific brands, in part because we have used so many different ones over the years.  We began giving Roo omega-3 fatty acids early on and he did very well with them right away.  At the time we gave him one called Coromega mostly because it was easy to give (it comes in a small packet as an orange-flavored pudding that has no "fishy" taste).  Coromega was easy to give, convenient, and we were able to mix other supplements into it.  However as our dietary intervention evolved it no longer became feasible to give (I'm not sure but I think it contained sugar).  EFAs in this form were so effective that I would joke that there was a word in every packet.

We continued Roo on standard fish oil, but in the summer of 2009 I decided to begin a new combination supplement called SPEAK.  It has high levels of omega-3s, vitamin E, vitamin K2, and borage oil (an omega-6) among other things.  We saw a clear and nearly immediate jump forward when we began SPEAK and each time we increased the dose.  When I first upped Roo's dose from one to two capsules, he ran a high fever for at least 4 days.  He had barely had any fever since his regression which we have taken as a sign of a weak immune response.  Every time he has spiked a fever he has had remarkable progress which is common for "viral kids" which we know Roo is.  After this prolonged fever he emerged changed- something had definitely been killed off that was holding him back.  For this reason I believe that SPEAK has immunologic activity.

I eventually did decide to take Roo off of SPEAK and try to recreate the blend myself as it is costly.  He did alright with this although I'm not sure I saved any money and he did not lap forward as he had with SPEAK.  In December of 2010 I put him back on SPEAK and once again he responded immediately.  We saw a big jump in asking questions, especially abstract ones and "wh" questions.  Within one month his articulation had improved dramatically and he was able to talk in his classes on topic and intelligibly.  He is now, as of the spring of 2011, taking 3 capsules per day and he is talking non-stop.  His toys are having intelligible conversations during play, and his imaginative play has improved dramatically.  He built a lego "space station" about 4 weeks ago and has kept up an ongoing game with it since then.

Each two capsules of SPEAK contains:
725 mg of EPA
275 mg of DHA
60 mg of GLA
500 I.U. of alpha d-tocopherol (a form of vitamin E)
200 mg of gamma tocopherol (another form of vitamin E)
2 mg of vitamin K1
300 mcg of vitamin K2

To learn more about SPEAK go here.  They have an introductory offer where you can get two boxes for the price of one.

I think that the vitamin K2 may be one of the most important components for Roo.  K2 is produced by good flora in the gut and therefor is probably low in anyone with gut damage and dysbiosis.  K2 can be found in pasture butter (butter made from the milk of cows that were eating growing green grass) and fermented foods.  K2 seems to do many things in the body, but many of them seem to relate to how calcium is used and absorbed.  K2 seems to help the calcium be put in the right places and not in the wrong places.  I have wondered if K2 helps to address high histamine because calcium draws histamine out of tissues and into the bloodstream where it can be neutralized or excreted.  Perhaps low K2 keeps calcium from being available for this function? There is also evidence that K2 helps reduce oxalate problems, most likely by shutting down endogenous production of oxalate in the liver as a byproduct of metabolism.  I plan to research this theory further and do a post about it.

Vitamin E has also been known to be an effective treatment for oral dyspraxia for quite a while.  Roo has not been diagnosed with dyspraxia, but speech has been one of the hardest things for him to develop so I do think it is relevant to him at some level.  Research published in 2009 found that vitamin E supplementation was an effective  treatment for a subset of children with verbal dyspraxia.  The researchers note that vitamin E deficiency is known to create a constellation of symptoms matching those common in kids with oral dyspraxia including speech difficulties, sensory processing challenges, and abnormal pain sensations.

The Linus Pauling Institute has more information on vitamin E here.  It seems that the primary role of vitamin E is to protect the fats in cell membranes from damage by oxidation, which leads to inflammation.  Oxidative stress and inflammation are central biological features of people with autism (and other neurological issues) so it makes intuitive sense that it would help.  Additionally, vitamin E helps LDL to transport cholesterol from the liver to tissues in the body were it is needed.  Cholesterol is necessary for hormone production and repair of tissues (among other things) which may be another way in which it helps with speech.  Vitamin E has also been found to increase vasodilation which may lead to better blood flow to the brain (a common issue in autism) as well as aiding in the function of certain immune and inflammatory cells.

Treating Illness or Over-riding Healing?

I recently watched a video by Dr Chestnut, a chiropractor, that covers the concurrent rise in medical treatment and costs with the decline of overall health in the US and other developed nations.  In the US, prescription drug use he says is up 55 times since the 1960s while the population continues to become more and more sick rather than more and more well.  He says he has to ask the question whether drugs and surgery are the answer, but we just haven't found the right ones yet, or is the paradigm from which they come flawed?  His conclusion is that drugs are generally used to override the body's attempts to heal itself and restore balance, and that this comes from a paradigm of thinking that illness stems from genetic errors and represents a failure of the body that needs to be "corrected" from the outside via drugs or surgery.  The subtitle of this video is "Drugs override the body's innate ability to self-heal and self-regulate."

This dovetails perfectly with what I heard in an interview with Dr Thomas Cowan M.D., author of The Fourfold Path To Healing, about healing and medicine.  Dr Cowan is an MD who has studied a number of alternative forms of medicine including homeopathy, anthroposophic medicine, and herbal medicine.  So many things were covered in the hour-long interview that were paradigm-shifting for me including a whole new way to look at both heart-disease and cancer.  Many of the resources and practitioners  that I come across have pieces of the puzzle to add- a new perspective on a symptom or illness, a new way of looking at something, a connection that others have failed to see.  Dr Cowan has done all of those things but more than anything he can see the "big picture" of health, wellness, and healing, and can convey succinctly his paradigm-altering insights. To listen to the interview click here.

He will be the inspiration for many blog posts, but for now I will focus on one of those "big picture" questions that he posed- "are we treating the disease or the therapy?".  What he means is that many of the symptoms that we see are reactions by the body to an insult or injury and are an attempt by the body to compensate or heal these underlying problems. To illustrate his point about which is the disease and which is the therapy, he used the simple example of a splinter.  If you get a splinter in your finger and don't remove it, your body will produce pus around it.  The splinter is the disease and the pus is the body's "therapy" or attempt to correct the problem.  Removing the splinter is treating the disease, draining the pus is treating the therapy instead.     The body's therapy or compensation strategies are what we call symptoms, and while not the disease itself, tend to be mistaken by allopathic doctors as the disease process and thus the target of allopathic treatments (drugs or surgery).  Other examples would be giving fever-reducing medication rather than supporting the body in fighting off an infection, giving laxatives for constipation rather than addressing the disordered digestive process, and using medications to lower cholesterol rather than figuring out why cholesterol is either being over-produced or under-utilized. 

This is the same principle that we in the autism world are referring to when we talk about the difference between treating the underlying cause versus managing symptoms.  Don't get me wrong, there is a lot to be said for managing symptom either when the cause has not been found or treating the cause is a lengthy process, but it is not the same thing.  Occupational Therapy can help a person work with and work around sensory symptoms that result from physiological illness but won't correct the underlying illness process.  This is analogous to a Physical Therapist helping someone to overcome physical limitations from a physical illness or injury.  If someone were to step on a tack, a physical therapist could help them learn to walk differently or to find other ways of moving around to avoid pain.  A medical doctor could prescribe pain medication to ease their discomfort.  But wouldn't the prudent treatment be to remove the tack itself?  This is like giving anti-psychotic medication, sleep medication, laxatives, or alerting medication such as Ritalin to children with autism.  Why not endeavor to remove the tack itself?

Additionally, addressing the symptoms rather than the cause allows the disease process to continue unchecked and will lead to more and more symptoms as the body continues to try to bring itself back into balance.  The first time I remember coming across this concept was in an article in Mothering Magazine when Roo was a baby.  The article was an introduction to anthroposophic medicine and was the first time I'd heard of it.  I'm sure there were many fascinating things in that article had I been in a place to hear them, but the one thing that really stuck with me was that the minor illnesses of childhood such as fevers were attempts by the body to restore balance.  Whether they said this or not I don't remember, but I understood that they arose from homeostatic mechanisms.  I have come to realize that the ability of the body to take steps, such as spike a fever to restore itself to balance, is what health is.  For years Roo would get sick but never had a fever.  I realized that this was not a sign of health but rather a sign of diminished health.  He began having fevers again while he was under the care of a homeopathic doctor who was overjoyed to hear of this.  Once he began to have fevers we realized that during a fever he would be talkative and lucid, and that he would have major leaps forward developmentally after a fever.  This experience drove home to me the truth of my theory that the robustness of homeostatic mechanisms is a measure of health in a person.  I have come to see our healing of Roo as being about removing the barriers that keep his body from restoring itself to health rather than "causing" health from the outside.

Oxalate Levels of Foods

I discovered about 3 years ago that Roo was reacting badly to the very highest oxalate foods, such as almonds, and took those out at that time.  I revisited the issue about 6 months ago because Roo was having problems with urine leaking at night, and was stunned to discover that not only did he need to be on a low oxalate diet but that I also need it very much.  This may be my primary food sensitivity.  Oxalates can cause the pain and exhaustion of ME/CFS (or at least contribute to them significantly), at least in part because oxalates injure and kill the mitochondria.  They also keep good bacteria from being able to colonize the gut if the level of oxalate in the gut is too high.  Oxalates can also cause the release of histamine and so can cause all of the same symptoms that histamine can.  Vitamin B6 inhibits the formation in the body of oxalate so a deficiency of this vitamin may predispose a person to have an oxalate problem, so there may be a correlation between Pyrroluria and having high oxalate levels. 

For the past 6 months I have been struggling to follow the low oxalate diet using a variety of lists available online as guides, but the lists often don't agree with each other and this has been very frustrating for me.  I finally created the list below by compiling information from the lists that are in the files section of the Trying_Low_Oxalates yahoo list, which has the most up-to-date lists.  One reason why lists don't agree is that newer testing is using more reliable methods, so I gave preference to newer data when I had to make a choice.  I can't guarantee that this information is correct, it's just the best I could come up with.  I will update it as I get more information.

The foods with the very highest levels, that need to come out immediately when an oxalate problem is suspected (and should never be consumed by a person with a known oxalate processing problem), are: 

almonds, amaranth, black beans, brazil nuts, beets (root and greens), buckwheat, cashew nuts, cannellini beans, chocolate, corn meal, cooked tomatoes, great northern beans, marshmallow root, milk thistle, navy beans, oil of oregano, peanuts, pecans, pine nuts, pink beans, pinto beans, potato chips, potato flour, rice bran, rhubarb, sesame seeds and tahini, slippery elm bark, all soy, spinach, star fruit, sweet potatoes, teff (flour and whole grain), quinoa (whole grain), white bean flour, and yucca powder.

All meat and animal products are low (eggs, milk, butter)

Vegetables-

LOW- alfalfa sprouts, avocado,  arugula, asparagus (boiled), banana pepper, fresh basil, bok choy, broccoli (boiled), broccoli raab, cabbage (all kinds), cauliflower, chives, cucumber, daikon radish, garlic, kale (1/2 cup, boiled at least 6 min), kohlrabi, all lettuce, mung bean sprouts, mushrooms, mustard greens (boiled), onions, green peas (boiled), raw tomato, snow peas, sweet bell peppers (red, orange, yellow but NOT green), radishes, shallots, yellow summer squash, all winter squash (acorn, butternut, pumpkin, etc), turnip (steamed or boiled), wakame, water chestnut, watercress, zucchini, rutabaga (1/2 cup, boiled 1 hour)

MEDIUM- artichoke (boiled), asparagus (steamed), Belgian endive, broccoli (steamed), Brussels sprouts, carrots (1/2 cup boiled), celeriac, collard greens (boiled), eggplant (high histamine!), fennel, grape leaves (one), green onion, jicama (peeled), kale (steamed 6 min), nori, olives, (5), red onion, green beans (vary- roma and runner are med cut and boiled, string are high?), snow peas 

HIGH- Anaheim peppers, green bell pepper, brocollini (steamed), carrots (raw or steamed), celery, chard, chicory, hearts of palm, parsnip, potatoes (red without skins and boiled are lowest), tomatillo (one is medium), many green beans (pole, French fillet), leeks, nopali cactus, okra, parsley, sugar snap peas, purslane, radicchio, sorrel, sweet potato, green tomatoes, canned tomatoes, yams (in US yams are sweet potatoes)

Fruit-

LOW- apples, apricot (one), billberry (can get as jam), cantaloupe, sweet cherries, cranberries, dates, fresh fig, green grapes, huckleberries, lemon, lychee, mango, melon, oranges, passion fruit, peaches, yellow plum (most plums are low, some are medium), golden raisins, strawberry (less than 10), watermellon

MEDIUM- banana (half is low), Bosc pear, grapefruit (white), lime, papaya (1/4 cup), pears, pineapple (is high histamine), pomegranate, blueberries (1/2 cup), dried cranberries, dried cherries (1/3 cup), Italian prunes, tangerines, mandarins, nectarines, persimmon

HIGH- Anjou pears, dried apricots, blackberries, clementines, elderberries, grapefruit (pink), Hachiya persimmons, pomegranate, raspberries, gooseberries, goji berries, kiwi, citrus zest, currants, concord grapes, dried figs, guava

LOW FRUIT (and other) JUICES- apple, apricot, blackcurrant, cranberry, cherry, white grape, grapefruit, lemon , lime, noni, orange, pineapple, red currant juice, aloe vera juice (great for soothing, healing GI tract)

MEDIUM JUICE- carrot, coconut water, red grape, plum, pomegranate

HIGH- Kern’s apricot nectar

Seeds, Nuts Beans, and Grains

LOW- chestnuts (canned or roasted), coconut (milk is medium), flax seed, pumpkin seed (1/4 cup), 1 T pumpkin or sunflower seed butter, macadamia nuts (5 or fewer), red lentils (boiled 30 min), white rice, wild rice, black-eyed peas, split peas (both green and yellow), cellophane noodles (GF), Ancient Harvest quinoa spaghetti (1/2 cup)

MEDIUM- coconut milk, sunflower seed (1/4 cup), macadamia nuts (up to 25 nuts), pistachio (up to 25 nuts), pumpkin seeds (1/2 cup), walnuts (1/4 cup), popcorn (Orville Redenbocker’s is high), psyllium husks (1/2 cup), red kidney beans (1/2 cup), Tinkyada brown rice pasta, brown rice (1/2 cup), brown jasmine rice (1/2 cup), garbanzo beans (1/2 cup), lima beans, rice spring roll skins, millet (1/2 cup, boiled 30 min)

HIGH- Arrowhead Mills brown basmati rice, adzuki beans, black beluga lentils, fava beans, hazelnuts, hemp milk, green lentils, navy beans, poppy seeds, quinoa, red beans, rice milk, white beans, GF oats

Flours and Baking-

LOW- agave nectar, almond extract (pretty much all flavoring extracts), white chocolate, carob, coconut flour, guar gum, tapioca starch, baking soda, cornstarch, unflavored gelatin, rice starch, xylitol, stevia liquid (powder is high)

MEDIUM- flax seed meal, potato starch (1/2 cup),  sweet rice (mochi) flour (1/2 cup), green pea flour, chick pea (garbanzo) flour, pumpkin seed flour (1/2 cup), wild rice flour (1/2 cup)

HIGH- arrowroot, brown rice flour, chestnut flour, Chatfield’s carob powder, carob chips, fava bean flour, millet flour, sorghum flour, stevia powder, white rice flour (especially Bob’s Red Mill stone ground)

Flavors, Spices, Other

LOW- vanilla, coconut oil (be careful- it kills bacteria, fungi, viruses and can cause die-off), olive oil, sesame oil (including toasted, great flavor), mace, maple syrup, mayonnaise, mustard, vinegar (high histamine), capers, chives, cilantro, ginger root, bay leaves, prepared horseradish, saffron, green herbs (dill, basil, oregano, rosemary, sage, thyme, tarragon, etc), white pepper (black pepper is high), nutmeg (up to 3 tsp), sweet paprika, parsley (dried, 1 tsp), Torani chocolate syrup, peanut oil, tabasco sauce (up to 2 T)

MEDIUM- cardamom (1 tsp), cayenne (1 tsp), cinnamon (1/2 tsp), chili powder (1 tsp)

HIGH- allspice, anise, black pepper, celery seed, clove (ground), coriander seed, cumin, curry powder, fennel seed, turmeric

Tea, Beverages-

LOW- chamomile, fennel, hibiscus (?), licorice, mint/peppermint, Kukicha twig tea, nettle, Ojibwa tea, pau d’arco tea, roibos (?), rose hip tea, senna tea, yerba mate (medium), wine (high histamine), coffee

There is a lot of disagreement about black tea and green tea.   It appears that if either is brewed very briefly, they may be medium oxalate, but if they are brewed longer they are high.  This seems to vary quite a bit by brand of tea as well so I chose not to include either kind of tea here.

Some Random Musical Pieces

Roo loves music.  It's common for people on the spectrum to have musical talent, but this seems to be especially true for people with Hyperlexia, and Roo is no exception.  What is extraordinary for Roo is that when he was younger his sound sensitivity was so extreme that music was painful for him so for years we had no music in our house.  His sensitivity even extended to people singing, which is part of the reason why he didn't attend any sort of classroom or preschool environment when younger.  The fact that his sound sensitivity is mostly healed and that he can now enjoy music is one thing we are very thankful for and has been one of the wonderful things about Roo's healing.  It's also further evidence that his ASD traits aren't "who he is"- they aren't by choice- they are limits that have bee imposed upon him, and when they are removed he can spread his wings and enjoy the freedom.

So, here are several musical pieces that have caught Roo's and my attention for various reasons.  This first video is of a young man with autism named Martin who has a wonderful talent for sining, but is otherwise essentially non-verbal.



This next video is a performance of "Sunday, Bloody Sunday" by a recovered child at the 2009 AutismOne conference.  While Roo loves to watch other people who have autism (or did have autism), I also find the lyrics to be particularly appropriate for a conference about autism recovery.  I have found that the lyrics of so many songs have taken on new meaning to me and I know I'm not alone in this.



This last piece is the song "Giant Steps" by John Coltrane.  Roo has a picture book that presents this song in a graphic way to illustrate some of the musical ideas of Jazz.  We decided to look for the song on YouTube so that he could hear it (he loves looking things up on YouTube and because of his Hyperlexia has been able to do this independently for a while).  He was enchanted with this version where the music appears to be written as the music is played.  I'm not entirely sure that written music has the same appeal to him as the written word, although I have always wondered if it would, but he was so entranced by this video that I had to include it here.

The Viral Piece

A big piece of our puzzle presented itself in 2008 when I became very sick with what was first thought to be a heart problem, but later turned out to be a larger chronic health condition.  My doctor (actually Roo's DAN! doctor) suspected brain inflammation because of my range and complexity of symptoms, and wanted to look for viruses as one possible cause.  Testing showed chronic active HHV-6, a virus that can cause smoldering inflammation and damage in the central nervous system, and which is found (in it's active form) in most people with Chronic Fatigue Immune Deficiency Syndrome as well as people with MS.  I was put on Valtrex and showed immediate (although limited) benefit.

In a moment of cosmic synchronicity, just days before I got the test results I had read an article that HHV-6 had been found to weave itself into a person's genetic material and could be passed from mother to child in this way.  The results of congenital HHV-6 infection weren't known for sure, but the characteristic traits that had been observed seemed to be a good fit for Roo.  I convinced the Dr to put Roo on a trial round of Valtrex as well to see if he responded.  He potty trained in less than 24 hours, something we had been working on for several years without much progress.  His language development also jumped forward to such a degree that his speech path was speechless!

Our current working hypothesis is that Roo had a weakened immune system (possibly from genetic susceptibilities or other factors), such that when he got Roseola- a normally benign childhood illness- it led to neurological inflammation and ultimately to many of his ASD symptoms.  The damage to his gut could have been the result of other opportunistic infections, which were allowed to flourish because of the immune-suppression that this virus can cause, or it seems equally possible that whatever immune weaknesses led to the chronic viral activation also led to the opportunistic gut infections, including bacteria and yeast, that seem to be at the root of his digestive difficulties.  Whatever direction the causality goes, these opportunistic "bugs" have been churning out a steady stream of neurotoxic metabolites that have been disrupting brain function as well as other biological functions (probably including mitochondrial function).  The mitochondria provide the energy that powers the immune system, so once again we have a potential feedback loop that is complicating matters and making it even more challenging to establish the chain of causality.

It turns out that inflammation is a very common health problem in mothers of children on the autism spectrum.  It is common for these mothers to have such inflammatory conditions as depression (seen before the diagnosis of autism in her child), CFIDS (Chronic Fatigue Immune Deficiency Syndrome), fibromyalgia, allergies, and other auto-immune disorders.  Understanding the role and mechanisms of inflammation in the body, as well as how it can go awry and why, seems to be one of the central questions of this epidemic.

Here are a few links and resources regarding HHV-6 and viruses in general:

This is the article that I had just read when I got my test results, the one discussing research that found that HHV-6 was integrating itself into the chromosomes of humans and being passed on congenitally.   This is an abstract for another study that also found that HHV-6 was being passed along congenitally in 1% of births.  (I just discovered that both of those links are no longer good and will try to find the information elsewhere.  In the meantime, Science Daily just ran a story with similar but more updated information here.)

This article in The New York Times is reporting on a study (by Komaroff, Cheney, Peterson, et. al) that found brain inflammation in CFIDS patients as well as demyelination.  This study also found chronic active HHV-6 in most of the patients studied (but didn't find evidence of a causal link). This is significant because it is the first study linking CFIDS to physiological abnormalities.

It turns out that, in anther cosmic coincidence, CFIDS is almost as much of a political minefield as autism is.  The site Osler's Web has a great deal of information about both the disease of CFIDS itself as well as documenting the bizarre web of political intrigue surrounding it.  This piece details the obsession that Bill Reeves, former lead investigator into CFS for the CDC, had with writing off CFIDS as a psychosomatic illness rather than a biologically based one.  He terminated research that was promising and has played a major role in keeping patients from getting the attention and medical care that they need.

Bill Reeves left the CDC this year after the fallout from the discovery of XMRV, a human retrovirus, that seems to be highly linked to CFIDS.  This will hopefully begin a new willingness in the CDC to acknowledge the biological reality of this disease and finally get some good research going in this direction.  In the meantime a private research institute, The Whittemore Peterson Institute for Neuro Immune Disease, has been conducting valuable research into the role of viruses, namely HHV-6 and XMRV, in acquired immune and neurological dysfunction.

This article explores the connection between neurological inflammation and immune function in autism, although as with most things that have the word "autism" in the title, it applies to a much broader range of issues.

Our Diet Intervention Experience

When Roo was 2 1/2 we were still starting out on this journey.  We had been told that his excessive ear wax was the source of the problem and that we needed to get it out.  After 6 months of trying without success, our doctor (a naturopath) suggested to us that a food allergy could be the cause of the wax buildup.  We had no idea what food it might be- he had no acute reactions to anything.  We weren't going to do a blood test, so we felt at a loss of where to start.  I had worked with children with autism before having my own kids and I remembered that there was this "gluten-free, casein-free" diet that some people were using.  Well, we had been assured that Roo didn't have autism, but it seemed as good a place to start as any.  While we were at it we threw in some "anti-yeast" diet aspects as well (although we dropped these after the first week).  It was from these modest beginnings that my obsession with diet intervention would develop.

Before the diet, Roo had essentially no words.  He would sometimes count from 1 to 10, always correctly (which we found very suspicious), but no functional language.  By the end of the first week on the new diet he had said over 30 words.  I don't think many had been functional, they had mostly been echolalic and many were not used again for a long time, but it was an obvious improvement.  We were religious about the diet and from that time on we were hooked on special diet.  Roo had been on the diet for 6 months before we took him in to be evaluated at the age of 3, and I think the gains that he had made in those 6 months are part of why he got no formal diagnosis.  Looking back I still think that a diagnosis of PDD-NOS would have been appropriate.

The next step for us was food allergy testing.  We did some testing via a machine called EAV testing, which is similar to muscle testing.  It showed Roo was sensitive to dairy, wheat (but not gluten), and refined sugars.  It may have shown a few other random things, bu the big change was taking out all refined sugar (cane, corn or beet derived) from his diet.  We saw more improvement. For a long time we focused on other treatment approaches and didn't tweak the diet.  When we started seeing a DAN! doctor (DAN! stand for Defeat Autism Now!, and these doctors have specialized training in diet and biomedical treatment) we did a blood test for IgG sensitivities and now there was another long list of things to avoid, including grapefruit, coffee (??), apple, egg, mustard, oranges, peanuts, and watermelon.  His diet got more restrictive, and he again continued to improve.

When we first began seeing the new DAN!, we had just had an Organic Acid Test done from Great Plains laboratory.  One of the things it showed was high oxalic acid which eventually led us to look into reducing Roo's oxalate intake.  This meant no almonds, spinach (he didn't complain), beets (which he actually liked), kiwi, black pepper, or chocolate.  I don't remember if we had already eliminated soy or if we took it out at this point.  We didn't actually put Roo on a low oxalate diet, we just took out things that were very high in oxalates.  Another big improvement.

After addressing the allergies and oxalates the next dietary step was removing high histamine foods.  We discovered the histamine sensitivity by accident when his brother developed seasonal allergies and some mild OCD behaviors one spring.  We then removed all berries, pineapple, anything fermented, aged or cultured, all processed meat, spinach, most spices, and tomatoes (see the post on the low histamine diet for the full list and the reasons behind it).  At some point we wee careful to remove artificial dyes and colors and anything else petroleum-based, as well as MSG and glutamate.  The big change from this was taking out yeast extract and nutritional yeast.

We had gotten to a point where Roo's diet was so complicated and restricted that I tried to avoid discussing it too much with people.  Roo had made so much progress with the diet changes, and had also made so much progress with the biomedical treatments.  During this time we began fighting yeast in him and that was one of the really effective treatments that we did.  We kept it up for a long time, and made great progress, but eventually it became clear that we would need to do more through diet to address the yeast.  I began to be very aware of how much starchy white food he ate.  Every time I gave him starchy food I would think about how I was throwing the yeast a party. 

Around this time, a good friend brought my attention to the GAPS diet (GAPS stands for Gut and Psychology Syndrome).  I had been aware of the Specific Carbohydrate Diet for over a year, and had thought that it would probably help but that there was NO WAY that I could actually do it.  When people talked about it on the message boards they usually said a variation of "this is the hardest thing I've ever done, but it has been incredible and worth it".  I was just coming around to the idea of trying SCD when I r4ead the GAPS book.  It turns out that GAPS is based on SCD, but has added some very important aspects to it.  As I read the book I had sinking feeling that now there was no turning back.  It all made sense, and now I would have to do this diet.  I knew it was true and I knew it would help Roo's body actually heal, rather than simply avoiding future damage, which is what the other diets were all about. 

In January of 2009, we just did it.  It was like jumping off of a cliff- if you stand there too long and allow yourself to think about, you freeze and never do it.  I knew this would be miserable and hard and that there was no way around it but through it.  Roo screamed and barely ate much the first 2 days.  On the third day, he had a fever and couldn't keep anything down- even drops of water.  It was horrible, I felt so guilty because I knew that I was causing this.  When he woke up the morning of the fourth day a fog had lifted-he was in a clearer state then he had been in since his regression.  Something in his body had died on day 3 (or possibly it was withdrawal from a food addiction) and it needed to happen, as painful as it was to watch. 

Three months into the diet he had improved enough that I could begin taking him to library storytime.  He started to really WANT to be with other kids and be part of the group.  He carefully observed them for clues of how to interact.  He became happy and socially outgoing.  His language improved.  Basically, he "woke up".  Now, nine months into the diet, he is able to attend preschool (yes, even though he's 6) without any modifications at all and he is thriving.  He has friends and is well liked at school.  His body has healed enough that he can eat cheese and cultured butter (he was profoundly sensitive to dairy before GAPS).  His diet has begun to expand for the first time- he can tolerate more oxalates and more histamines, and is no longer allergic to many of the things he tested allergic to in the past.  He is no longer on the spectrum.  The two issues that he is left with from his time spent on the spectrum are a language delay that is still pretty significant, and an anxiety problem, although that has improved about 75%.  There have been a lot of things that have helped him get where he is today, but the GAPS diet has been key.

Roo meet Mercury, Mercury meet Roo

When Roo was 2, it was clear that something was not right- he wasn't talking, screamed much of the time, avoided people, and seemed to be in his own world deep in his head.  He spent much of his time forming letters out of sticks or anything else he could find (it would be another two years before we would learn about Hyperlexia). We were assured that it wasn't autism- he appeared deaf, and we were encouraged to focus on his ears and his hearing ability.  The audiologist refused to test his hearing until we could get the impacted wax out of his ears so thus began The Battle of the Wax.  Who knew how tenacious that @#&! stuff can be?!?!

This precipitated Roo's one known acute mercury exposure (he is completely unvaxed).  After trying many natural approaches to getting out the wax, I carried him kicking and screaming for blocks to an ENT.  The man was incredible- worked like lightening, and was able to view the wax in both ears and do a timpanogram that showed that indeed the impacted wax was inhibiting the movement of the eardrum.  Problem solved!  Roo was fine, but just couldn't hear properly- as soon as we took care of the wax all would be well, he would suddenly begin to speak and socialize just fine.  Or so we were led to believe...but I digress.  We were given a prescription for eardrops that would Get The Job Done.  They contained all sorts of junk- several antibiotics and steroids, etc, but after all this was now nuclear war.  We just wanted that wax GONE and our sweet little boy BACK. 

How deceptively simple it all was.  What we didn't notice was that those drops also contained thimerosal (yep, that nasty stuff that is about half ethyl mercury) in the PARTS PER TEN THOUSAND!!!  This is stuff that is known to cause toxicity in the parts per billion, in a product that you put in your ears, which happen to be right next to most people's BRAINS.  Well, mercury and brains don't mix- not if you happen to be fond of the brain in question.  About half an hour after we administer the drops Roo woke screaming in the most horrible, terrified way I can imagine.  This was the screaming of a person being tortured- I am not exaggerating.  I can barely stand to think of it even now, 4 years later.  His eyes were huge and he was beyond hysterical.  We thought of taking him to the emergency room, but would they believe us?  We gave him some eardrops and now this?  And after all, these were the same people who thought it was such a great idea to put the mercury-laden drops in his ears in the first place.  Their credibility was shot and honestly they have yet to earn it back.

After about 30 minutes it was over.  We were so completely shaken.  When I spoke with Roo's doctor the next day she told me that it sounded like the drops had caused a seizure.  We''ll never know for sure what happened that night.  Many times I have kicked myself for not going to the emergency room, maybe they would have detected a seizure?  What we do know is that night it became clear to us that our crazy ride with Roo was just beginning, that things were not so simple as we had been led to believe, that if answers were to be found we would be the ones doing the finding, that all these experts- with all their fancy expert trappings- really don't now all that much, and what they don't know can hurt my child.

This experience, The Year of the Wax, was a foreshadowing of what our lives were to become.  It was the final stop in the world of familiar things, beyond which we found ourselves in uncharted wilderness, making our own trail.  That night when Roo woke in terror was a baptism of sorts- a sudden immersion into the terrifying loneliness of knowing that your sweet child desperately needs help, and yet realizing that there is nowhere safe to turn for that help.  That was the year that the smug, arrogant facade of conventional medicine came crumbling down, and we realized that they actually know very little of use to us in healing our son.  

While it was an end of sorts, it was also a beginning.  As it turns out we were not alone in that wilderness.  It is populated with thousands and thousands of families on a similar journey.  There are roads, and signposts, even guides, if you know where to look and who to ask.  Some even find their way out the other side.

As a postscript, when we finally insisted that Roo's hearing be tested despite the persistence of impacted wax, he was found to have exceptionally good hearing.  The one other bit of information that I will add is that warm soapy water is the most effective thing at removing wax.

Life as an Extreme Sport

One of the things you learn quickly when you have a child on the spectrum is that autism takes no breaks. It's 24/7, including evenings and weekends. You can't put it on hold for a while to catch up on sleep or get the house clean. It's relentless. The cruelty of this is that no one needs a break more than the parent of a child on the spectrum, yet no one has a harder time getting one. I am relatively lucky as Roo is so less severely affected than some children with autism can be.

However, I have been on a ride for the past nearly 5 years that just hasn't let me off. In order to stay sane under circumstances as these it is necessary to find some sort of escape, however brief or delusional. Eating treats late at night helped for awhile, although this diminished in effectiveness when I began to follow the special diets as well. Even on the SCD I do still find ways of indulging such as peanut butter with honey, but it just isn't the same as a big dish of chocolate ice cream. Getting lost on the Internet late at night has been a favorite of mine, and judging by the level of company I find there, a common favorite for others as well.

Every now and then I have found time to watch TV, or better yet a movie, that is in no way related to the spectrum, special diets, the toxicity of our environment, or the degradation of our food supply. These times have been few and far between but very sustaining. Recently, my husband brought a DVD home from the library about extreme sports. Wonderful, I thought- what an escape. As I watched the beautifully filmed images of people climbing glaciers, surfing 35-foot waves, and being dropped off by helicopter to ski down sheer mountain cliffs, I thought that what they were doing was probably about as distant from my daily routine as I could imagine. I reveled in finding such a complete escape from the world of our everyday challenges.

As the film progressed, we began to hear interviews with the athletes. They explained as best they could why they choose to do these things, why they are drawn to challenge themselves in such ways. Only by leaving behind the everyday world, some explained, could they really find out about themselves. By taking on increasingly more challenging goals they discovered what they were capable of- they found freedom in knowing that they had as yet not met their own limits. Some talked about how they learn self-reliance, problem solving skills, and gain a deeper understanding of human nature, and how these are things they bring back with them to their everyday lives.

Several athletes talked about how embarking on an adventure for them was like stepping out of time- they would go to a place so far removed from our normal experience, both physically and mentally, and what they experienced there had the power to transform them. They returned from this place with a sense of themselves, how they fit into the world, and what they were able to do that is just not attainable without such extreme experiences. Suddenly the film was no longer about something so removed from my life, I knew exactly what they were talking about. If you are fond of reading ASD blogs, you have probably read many accounts like the above. Parent X was just living a normal life- maybe going to school, maybe working, maybe already raising neurotypical children, and then suddenly they find themselves living a different kind of extreme sport.

I've heard a number of other parents describe the time following a diagnosis of autism as feeling like time had stopped, or feeling as if they had been taken somewhere outside of time. Like many families our lives were consumed by Roo's challenges and what to do to help him. Recently we have begun to re-emerge from the isolation and indeed it does feel that time has continued for others in a way that we have not been part of. It's as though we had been transported away to some strange place and have returned transformed. Living through this with Roo has fundamentally changed our family as a whole. When Roo was first struggling, I remember feeling sorry for him that he had a mother who just didn't have it in her to fight for him the way he needed. I had no idea what I was capable of until I was challenged in such a way as this. I guess that's the silver lining in all of this- I never would have chosen to be pushed out of an airplane (which is what this felt like), but when you are falling the only thing left to do is to learn how to fly.

I will leave you with a quote that we heard at the beginning of the film:

"Somewhere, out there, in the oceans and the mountains, is a place where time does not exist. When we get to that place, there is a voice in us that challenges us to go one step further. And those who find that place, and then return to the presence of others, become the speakers. They are the messengers"

Well, I would add that for some people that place can be found right here in our own homes. I have been to that place, and this blog is my message.

As a postscript, I am very excited to say that this post was published on the Age of Autism blog on June 14th:
http://www.ageofautism.com/2009/06/life-as-an-extreme-sport.html

Springtime in More Ways Than One

Today was a beautiful early spring day. The weather is beginning to warm up, and the days are getting longer. It feels as though the earth itself is waking up from winter and coming alive with renewed energy. If my life were a movie, this would be a clever metaphor for the "waking up" that our family is doing after a long, dark winter, which began about the time that Roo was 18 months old. During that time our family's world shrank to being not much larger than our home and immediate surroundings. maintaining any semblance of a "normal life" with a child with ASD was more of a challenge than we were capable of. Things we had previously taken for granted, such as having friends over for dinner, became daunting and exhausting. We withdrew from most extra-familial activities and relationships and essentially crawled under a rock.

Roo's disorder, and how to heal him, became the focus of my life to the exclusion of nearly all else. I lost touch with many friends because I had nothing to talk about aside from Roo's latest challenge or my most recent internet findings regarding how to treat him. Other people were going on with their lives, but mine had come to a standstill. I felt very alone during this time- without a diagnosis, it was hard to find a community where we fit in. I have revisited the debate many times regarding the positives and negatives of labels for our children, but for now I will say that a label can be like a road sign giving needed direction. I longed for a sense of commonality with someone. Our family had become isolated in so many ways.

Roo is now approaching his 6th birthday, and in the last several months, this fog of isolation has been lifting. His progress has been so significant that we are able to get out of our house more and take part in the bigger world. Now that we are having sunny days I try to get us all outside to get sunlight on our skin, and while I stand there with my arms out willing myself to make vitamin D I find myself also feeling the warmth of hope and joy for Roo's future. The world outside our home so recently felt alien and inaccessible to us, but now it feels full of wonder and possibility.

Welcome to Our World

This blog was originally set up to chronicle the adventures of our family as we desperately try to bring our son back from an Autism Spectrum Disorder. There are thousands of other blogs out there tirelessly bringing you a similar message- treatment is possible and recovery is real. So, we'll add our voice into the mix. Our story is a little different than many, and maybe hearing it will help someone. Or, at least, maybe it'll be interesting to someone :)

Our story is different in that we did not get the autism diagnosis at the beginning of our journey, as most families do.  Roo's autism was atypical, and he was evaluated after he had begun to respond to treatment.  He was eventually diagnosed with PDD-NOS, which is essentially atypical autism.  We also described a number of unusual characteristics of our son at that time of his initial evaluation, characteristics we would later learn (thanks to a friend at a birthday party and Google) are indicative of Hyperlexia. I cried when I joined an online group for families of children with Hyperlexia, because I could not believe that there were other children like my son. Children who would spend their time at the park forming letters out of sticks, who would read signs out of the car window, and who loved their alphabet magnet sets as dear friends.

This discovery didn't occur until the fall of 2007, one-and-a-half years after his evaluation, and while it was a relief to have a word to describe our son, it gave us no direction as to how to help him. He clearly had a physiological, medical problem rather than just a "differently-wired brain". After putting him on the gluten-free/casein-free diet, we discovered that he had extreme food sensitivities. He had very disordered sleep, often being awake for hours in the middle of the night. He was very sensitive to certain sounds, he was a very picky eater, he would wake up screaming at night- clearly in pain- but unable to communicate his needs to us. His bowel movements were horrible events, slimy and quite possibly appropriate for use in biological warfare. Obviously something in his gut was seriously wrong.

We have received very little guidance from professionals in regards to our son. We have been essentially making this up as we go along, getting most of our inspiration and ideas from other families on the internet who are on the same quest. The world we all inhabit together in cyberspace is a very strange one and begs for a metaphor. Karyn Seroussi, in her book Unraveling the Mystery of Autism and PDD, uses the poem of the Jabberwocky. Sometimes it feels more like a trip down the rabbit hole into wonderland, where reality breaks down and the unbelievable is common place. At other times I think of the Odyssey, when it seems that fate is against us, when we meet up with the short-sighted Cyclops of conventional medicine, and hear the alluring Siren call of the neurodiversity movement. At other times it feels like a demented episode of Blue's Clues in which we find little blue paw prints on lab tests showing high levels of toxic metals, food allergies, and metabolic functioning. We have journeyed up the river as in Apocalypse Now, going ever further into the darkness of political corruption, greed, deception, and what lies at the end truly is horrific. It can even be like an episode of the X-Files, and I do believe the truth is out there. Something is going on with our children, and the truth is out there.

As our son began to recover from his autism (he is now recovered), there finally was  time to begin writing down his story, although I would prefer to forget it all. The early years of a child's life are supposed to be wonderful and cherished memories, but for thousands of families like ours, they have been a hellish nightmare. I can't believe my son is almost 6 (at the time of this revision, he is 11). He is almost 6 and I am just getting to know him. I know he had a beautiful personality as a baby but I hardly remember it, before it was blotted out by this disorder. Many people claim that ASDs (Autism Spectrum Disorders) are part of who a person is and should be respected. My son has a complex disorder that is neurological, immunological, and digestive in nature, and as we are treating these physical problems his personality is shining through.

Our son's road to recovery has been anything but straightforward- it has wound around on itself, full of twists and turns and sudden changes of direction, and so this blog will probably also jump around and seem all out of order. Welcome to our world :)