This blog is a way of sharing the information and resources that have helped me to recover my son Roo from an Autism Spectrum Disorder. What I have learned is to view our symptoms as the results of underlying biological cause, which can be identified and healed. I say "our symptoms" because I also have a neuro-immune disorder called Myalgic Encephalomyelitis.

And, of course, I am not a doctor (although I have been known to impersonate one while doing imaginative play with my son)- this is just our story and information that has been helpful or interesting to us. I hope it is helpful and interesting to you!


Showing posts with label A Day in the Life. Show all posts
Showing posts with label A Day in the Life. Show all posts

Monday, July 17, 2017

The Realities of Living With Serious Disease

There are so many diseases and conditions that most of us have never heard of and know nothing about.  That, and the fact that for many of the disorders that we HAVE heard of we have only heard misconceptions and outdated information.  This can make it especially confusing when we find yourselves with one of these diagnoses; it means that our context and framework for trying to make sense of this new diagnosis is either not there at all or distorted.  We may feel alone, confused, isolated, unable to relate to anyone else.  This can slow down the process of getting treatment and can cause more emotional duress than would otherwise occur.  The videos that I am posting below are often directed at raising awareness among people NOT affected by the disease, which is another important goal, but personally I found it to be extremely important to hear about the daily lives and experiences of others who share my diagnoses.  It allows me to create a sort of "new normal" and helps me adapt to my new reality.  This doesn't mean that I give up fighting, or that I accept this reality as permanent, but without a solid place to start it's hard to know where to go and whether what I'm doing is helping.

So on that note I am presenting below videos that have been posted by people with a wide variety of conditions that tell us and show us what daily life is like for them, what challenges they face, what treatment might be life, or any other details of living with that condition.  These people are allowing us to see a vulnerable side of their lives that can be very hard to share so I am deeply grateful for people willing to do this.  Being able to "meet" other people who share my issues and struggles has helped me so much in figuring out "where I am" in life and have given me ideas about where I might go.

General and Miscellaneous:
Adjusting to life after a long hospital stay and being on TPN

This is a humorous video about being on a feeding tube (NG)

Lessons learned after one year of a feeding tube

Why Am I so Skinny?  (Woman with Gastroparesis talks about invisible illness and people being rude)

Things I didn't think about until I was in a wheelchair!

My Bronchiectasis Journey with Raihana's Cuisines

'In six days I'll lose my voice forever' - BBC News

An account of what hospital treatment (or lack thereof) is often like for people with rare and/or complex medical conditions.

We Told The Kids I'm Dying :(

Mast Cell Diseases and Other Atopic/Allergic Diseases:
STRUCK BY MAST CELL ACTIVATION SYNDROME, JENNIFER CREDITS M HEALTH EXPERT WITH SAVING HER LIFE

Unmasking Mast Cell Disease: An Interview With a Fighter and Survivor

Utah Teen Discovers He's Allergic to Food: 'I Remember What it Tastes Like, That Will Have to Be Enough'
 



This episode of the TV show Mystery Diagnosis is about a teen with EDS and goes into more detail about the process of getting diagnosed.  It also follows her through testing, diagnosis, and treatment.

My experience of Marfan Syndrome

PTSD and C-PTSD (Complex PTSD): What C-PTSD really looks like - the invisible disability


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Tuesday, January 12, 2016

You Know You're a Biomed Family When.....

You know you're a biomed family when....

...Someone mentions a city, and your first thought is which specialist practices there who’d you’d really like to see. 

...Your kid is watching a Star Wars movie and asks if midiclorians are like mitochondria. 

...You get REALLY excited when you find a large pack of disposable shot glasses in the drug store, and realize that no one around you would understand why.

...Your kids use medical terms when playing Mad Libs.

...You have to add words to your computer’s dictionary every time you write something.

...When you pack a picnic or food for travel you keep it cold with lots of the little ice packs that come with supplement and medication orders.

...You cringe whenever someone heats sauerkraut because it kills the probiotics in it.

...You have a favorite type of oral syringe, encapsulating machine, weekly pill box, etc.

...You have a kitchen full of high end appliances (such as a dehydrator, juicer, Instant Pot, mixer, Vitamix, etc) while you and your family wears clothes from the clearance section or thrift stores.  
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Thursday, August 2, 2012

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.
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Friday, July 20, 2012

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.
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Sunday, April 17, 2011

A Day in the Life 4/13/11

One of the reasons that I started this blog was to increase real awareness of the breadth and scope of Autism Spectrum Disorder.  Roo is atypical in his ASD and this was a major stumbling block for us in figuring out what he needed, and so we lost valuable time and he suffered more than he needed to.  In some ways he is milder than most kids with autism, which is why his doctor and I agree that PDD (Pervasive Developmental Disorder) is a more apt diagnosis for him based on DSM criteria, but he does not simply have "mild autism".  Autism varies in more ways than just one so it is misleading to put it all on a one-dimensional line and call it a "spectrum".  It is more of an n-dimensional plane (yes I'm a math geek).  He has "atypical autism".  This term is of course ludicrous as pretty much everything about autism is atypical, but there you have it.

Sharing what our daily life looks like was one of my original goals, but in the 2 years that I've been writing this blog, I have almost entirely focused on the science behind how we approach and treat Roo's ASD and my ME/CFS.  This is all important but I have realized that this is partly because it is hard to present the personal side.  It is deeply painful to acknowledge how all of this has affected us personally.  It's much easier to keep to the abstract and impersonal, but focus on the personal I must if I am to meet my original goals of raising awareness, processing and healing from what happened to us, and being able to see the chaos of our lives in in a way that makes any sense.  A very common theme among parents of kids with autism is a need to go back and figure out what happened to our children.  This post is the beginning of a series of  "a day in the life" posts that will hopefully put a more personal face on our journey through, and out of, ASD.

It is spring, and the weather today has been a strange mixture of sunshine and hail.  I swear some days I feel that my life must be a movie as the metaphors are so obvious.  If nothing else, autism is an unpredictable ride from one extreme to another.  I woke up this morning stewing about how much I want to attend the AutismOne conference this year, which I can do except for the fact that Roo has extreme separation anxiety.  He is nearly 8 years old and still it is so hard for him to be away from me for even a few hours with another trusted adult- how can I leave him for 5 days?  Sometimes the resentment and frustration over the limits that his ASD places on us is almost unbearable.  I still may go, but if there is hell to pay when I get back, I am the one who will be paying it.  And of course Roo.  He didn't choose this for himself and it is not *him* that I am frustrated with, but rather his ASD.  Nothing about having ASD is fair to him more than it is unfair to the rest of us.

In addition to that frustration, there are other reminders of how far we still have left to go.  He ate his breakfast with his hands, as usual.  He refuses to wash them with soap.  I dread breakfast every morning as it seems to be when he is pickiest.  I am grateful that he ate, and that he took the concoction of supplements that I prepare at every meal for him like some mad scientist.  And then, out of the blue, we are at another extreme and my jaw is left hanging open- we are making snakes out of paper and I have gotten the protractor out to show him how to use it to measure angles (we homeschool).  I give him a few examples, then show him that a straight line is 180 degrees.  He looks up at me and says "or zero degrees".  Which is true.  I humbly put the protractor down and wonder if I will ever know how he knew that.  Sometimes I get dizzy from the speed at which I can go from despair to awe. 

I also realize that I have almost come to take it for granted that we can have back-and-forth conversations and that he will actually look at me when he is talking much of the time.  Almost, but not quite.  One of the silver linings for me of the storm cloud that is ASD is that I have come to see the magic in the mundane.  I spent years wondering what his voice would sound like when (if?) he ever spoke.  Now, even when he is yelling at me I am in love with the beautiful sound of his voice.  Even what seem like such small steps, such as the fact that today he cut with scissors by himself for the first time, are monumental accomplishments in my eyes.

You see, with typically-developing children, these are called milestones that they pass at one time or another and the question is "when".  When your kid has ASD there is no guarantee they will ever do these things.  In fact, the longer you stare down these milestones the more it seems a miracle that ANY human can do these things.  You realize what a miracle every single step is along the path of development and it instills a feeling of pure amazement and awe.  It's a bit like flying in an airplane- the more you think about the mechanics of flight, the more implausible the whole thing becomes.  I personally get to the point where I wonder when the plane will give up this crazy illusion and plummet to the ground.

Thinking of airplanes reminds me that I am not yet over the fact that on a recent trip to California to visit family and friends, Roo had a panic attack on the plane.  I mean a full-out panic attack.  Once I got him talked down from it he was still yelling and near panic for 45 minutes.  Once we got there I was faced with the question of how to get us home.  Like a cold shower, this dilemma brought me back to the reality that although Roo is close to recovered, our lives are still very far away from "normal".  Sometimes I can't see straight for jealousy of moms who have never had to contemplate drugging their children just to get them home, only to find out that prescriptions can't be filled from out-of-state.  We actually considered having my husband fly to California and rent a car to drive us back home to Oregon.  This life can be so absurd.  Anyone who wants to tell me what a gift autism is is welcome to pay for the train tickets I ended up shelling out for to replace our non-refundable airline tickets home. 

And so the day goes, back and forth.  Roo yelling at me over simple misunderstandings caused by his still-delayed language.  Roo playing well with friends for several hours without more intervention or assistance than I would expect to give any child.  He willingly took part in an arts and crafts activity and enjoyed it for the first time today.  While sometimes the smallest of things can trip us up and send the day into a nosedive, it's also the smallest of accomplishments that can stop me in my tracks in amazement.  There are times when it feels so isolating knowing how many things come to neurotypical families with what looks to those of on the other side of the looking glass here in autism-land like such ease, but there are also times that I feel almost sorry for those neurotypical parents for not knowing the incredible joy that you get when you see your kid with autism do something that you never knew if they would do at all, even something as simple as enjoying arts and crafts. 
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Wednesday, May 13, 2009

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
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Friday, March 27, 2009

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.
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Tuesday, February 17, 2009

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 :)
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