Friday, January 27, 2006

Thanks sooo much, Dr. Phil (NOT!!)

for the thorough education you provided the ignorant masses regarding Asperger’s Syndrome.

So now I’ll be spending the next couple of months explaining to other parents in my street that Salamander is NOT a homicidal ticking time bomb waiting for the slightest provocation to go off.

A fellow blogger did a very thorough job in describing all that was wrong with the damn show.

Thursday, January 19, 2006

One little bite won't hurt you....

Every so often, a discussion breaks out on the various boards that I visit regarding our special kiddos and their picky eating behaviors. And it just never seizes to amaze me that quite frequently the causes for the picky eating behaviors are deemed by the 'experts' to be sensory or behavioral. While I do not discount that for some kids the reasons are sensory or behavioral, I also wonder how many of these picky eaters have had a full food allergy/food sensitivity work-up....

Please, please, please, - if your child self limits to only certain foods, seems to throw up after certain foods, seems to gag on certain foods, or seems to only want to eat certain textures, or certain color foods, if your child is not gaining weight, loosing weight, is sick all the time etc, SERIOUSLY consider doing a full food allergy(IgE) and food sensitivity (IgG) work-up, even if you have been told that it is 'all sensory or behavioral.'

Especially if your child used to be a pretty healthy or 'normal' eater and seemed to have gotten 'picky' or 'selective' in the toddler years. And even more so, if the food issues are accompanied by diarrhea, constipation, waking up screaming in the middle of the night or after a nap (indication of reflux), gassiness, not gaining weight, losing weight, periods of uncontrolled rages, periods of sleepiness, spaciness, headbanging, etc. (and run like hell to a specialist whenever your pediatrician tries to convince you that your former 'eating everything in sight' child with above described symptoms is displaying 'typical toddler behavior' and is 'trying to manipulate or control his/her environment').

I too was told that the reason that Salamander was not eating or only eating certain foods was due to oral defensiveness and behavioral issues, or a result of an ASD child's need for 'sameness'. At 5 years of age, Salamander's behaviors were detoriating rapidly and we were caught in a downward spiral. He would only eat very limited foods and only a few bites at each meal (his foods of choice were PBJ sandwiches, apples, mozzarella sticks, chicken nuggets and french fries). Frequently, after a few bites, he would say that he was full and at least 2 times a day this announcement was followed by projectile vomiting, or explosive, foul smelling BMs.

He was 33 lbs at his 5 year check up and looking back at pictures of him around that time, I can't help but cry. You see a picture of a very sick little boy, that looks like a starvation victim - stick thin with a big bloated belly, black circles under his eyes, red checks, puffy lips and face, red ears, and a very spacey, doped up look on his face (but, per the experts, he was following 'his own growth curve', so I had nothing to worry about..)

Funny thing though, when researching on the web I stumbled across a lot of information discussing links between ASD, ADHD, SPD and certain foods. Too much information for it all to be a coincidence, in my opinion. Based on that research and the similarities in presentation between Salamander and the kiddos described in the various case studies, I decided to take several foods out of his diet.
At the age of 6 years and 2 months (when he was 36 lbs), I started by replacing as many foods as possible with their organic counterparts, I removed artificial colorants, flavorings etc, and then removed casein and gluten. And over the following 15 months or so, we also significantly cleaned up his environment (removed artificial scents, changed laundry detergent, bath soap, etc., no longer use artificial cleaning products in the house).

[Subsequent trips to the region of Dietary Interventions in BiomedLand landed us with a diet that is gluten free, casein free, soy free, limited nuts, egg free, yeast free, shelf fish free, no canola oil, no mustard, no onions, no bananas, no pumpkin seeds, and a whole bunch more free - all based on the outcome of a comprehensive IgG food sensitivity test. We continue to remain artificials free (modified Feingold), avoid meat derived from livestock fed with antibiotics, organic as much as possible, no pesticides, etc.]

I cannot even begin to describe the difference this has made for Salamander. He is now approaching 50 lbs and is starting to look so much healthier. No more vomiting, unless there is an infraction. Same for constipation and diarrhea. He eats like a healthy boy of almost 8 should eat (and despite the food limitations that we have - let me tell you, there are plenty that he can have and he eats them with gusto). His sensory issues have diminished greatly and his behavioral difficulties have improved tremendously too; overall I have a child that is 180 degrees different from the way he was pre food interventions.

So the moral of my story is, keep the whole child in mind. What may appear as sensory or behavioral may have an actual physical cause (or in Salamander's case multiple causes). Unfortunately a lot of specialists dismiss our kids' symptoms of the bet and will tell you that your kid is a picky eater 'because they have ASD, or because thay have SPD'. Balooney!!

It's almost a chicken and the egg problem - do they have ASD/SPD and therefore have GI issues, or is it that they become ASD/SPD because they have GI issues (and thereby the proper nutrients are not reaching their developing brains) ??? I suspect that, for a lot of our kids, their eating, behavior and sensory issues are directly impacted and related to their diets.

Salamander's situation may seem extreme. From conversations with other moms with ASD kiddos who have gone the dietary intervention route, I know that Salamander's situation is far from unique.
Like I said, I am sure that there are situations where our kids' eating issues are purely sensory and/or behavioral. But for those of you that are still looking for a cause, or causes, I hope my story will give you some food for thought (no pun intended).

Excellent books that have gotten me started on this road are "Is this your child" by Dr. Doris Rapp and "Children with Starving Brains" by Dr. Jacqueline McCandless. If it hadn't been for these two books, I would never have been able to get Salamander to where he is now.

Just take one bite, it won't hurt you....
Well, maybe it will.......

Treating a Child with Autism; who’s got it ‘Right’ and who’s got it ‘Left’?

Bah, Humbug...

Ya know, the more autism blogs I read, the more I am struck by this seemingly impossible to bridge gap between those parents that 'treat' their children with autism and those that proclaim they do not. And for some of those that proclaim that they do not, even the thought of wanting to treat a child with autism is something reprehensible, disgusting even, as it means that 'the parent is not happy with the child they got', that the parent 'is trying to fix the child', that the parent 'is trying to change the child into something he or she is not'.

On the surface, it looks like such a 'simple' debate. It's the 'Neurodiversity folks' versus the 'fixers and curers', it's the 'accepters' versus the 'blamers'. But looking at the debate at a deeper level, it is so much more complex than that.

For full disclosure, I firmly stand in the 'biomedical treatments' camp, and the reason for my support is very basic, the biomedical treatments we have decided to pursue have saved my son's life. Period. And no, I am not talking about saving his life from 'autism's clutches', I am talking about saving his life as in he is still walking around on this planet, he is still breathing, finally eating, growing, learning, and giving the rest of human kind a chance to experience a truly unique, gentle and loving soul. If I hadn't decided to take control of my son's situation myself, he would have ended up either in the hospital due to severe malnutrition and other medical illnesses, or he would have ended up in a psych ward heavily medicated. And he was only 6 years old at the time I decided to take control.

The fact that these treatments saved his life of course makes me anything but objective, but does not make me afraid to question some of the more controversial treatments promoted within the biomed community, or the motives of some players within the DAN community. It also doesn't leave me blind to the fact that the research supporting biomed treatments is woefully inadequate (although I refuse to believe that the tens of thousands of parents that are using biomedical treatments to help their children are all suffering from a mass hysteria induced grand delusion, or from an inability or unwillingness to deal with the fact that their child has a life long difability). And it also doesn't give me less appreciation and admiration for those that firmly stand in the neurodiversity camp (I do want to make a distinction between this group and the subgroup within the neurodiversity community that claims that 'all biomed is hocus pocus/voodoo science' - they are not one and the same) and widely proclaim their peace of mind, their acceptance and their optimism in the face of dealing with the day to day challenges of raising a child with autism. I greatly admire (and sometimes envy) these folks, as I know that I have waaaays to go on the road to acceptance and peace of mind.

Here's the thing though. While I don't discount that there are innate differences in how our kiddos are wired and that these differences have a genetic origin (I have by now come to realize that the extended family is dotted with a colorful collection of 'different wirings'), what I absolutely do not understand is why, in the eyes of some, it is so wrong to try to help my child function to the best of his ability with this 'different wiring' in a world that is not (yet?) equipped for dealing with his differences?

Why is it, that because I have chosen biomedical treatments as the primary mode to achieve that goal as opposed to ABA, Floor Time, RDI or medication, that I am 'accused' of trying to fix my child, or trying to cure my child's autism? Maybe it is all semantics, and once again proof that you got to be careful with how you refer to things, but it frustrates me to no end that I cannot seem to get across that I am not trying to cure my child's autism or trying to 'fix' him (he is NOT broken!!).

What I AM doing however, is actively treating my son's underlying legit medical problems that, in his case, contribute significantly to the more difficult aspects of being autistic. Medical illnesses that have been largely ignored by his previous doctors. And as far as I'm concerned, the fact that, as we are getting his medical problems under control, he is starting to PRESENT (in the eyes of his neurotypical environment) as less 'autistic' does not mean that he is getting cured or 'recovering' from autism.
Heck no, he is recovering from all underlying medical issues he has had to deal with, probably from birth (how would you feel/behave if you have been feeling really sick and lousy for as long as you can remember, hmm?). His neurological wiring will always be different, but now at least, as his health is improving and he is becoming more able to cope with having to live and function in the world that is designed for neurotypicals, he has a chance at achieving his full potential.

Let's take a closer look at all this brouhaha around the perception that those of us that pursue biomed want to make our kids 'less autistic', or want to change their 'natural state of being'. It's really too ridiculous for words.
Don't those that poohpooh biomedical treatments for this reason, use treatments too to make their kiddos 'less autistic'? What's the difference between addressing a child's constant crying and toe walking using ABA or addressing an autistic child's aggressive and self injurous behaviors through medication, and addressing same behaviors in same child with a removal of dairy and gluten from the diet and finding that the crying, toe walking, aggressive and self-injurous behaviors were related to pain and other discomfort the child was experiencing but wasn't able to express appropriately? I find it insane that pursuing 'the diet' is seen as fixing my child and/or making him less autistic, or as a desire to change his 'natural state of being', while it is apparently perfectly OK to change that same 'natural state of being' using ABA or psychopharmacological drugs.

And really folks, all those that proclaim that they accept their autistic child's 'natural state of being', who are you kidding?? Really?? You are telling me that you are OK with your child destroying the house, hitting or biting others or himself, throwing major league tantrums on a daily basis, not being able to make it from the kitchen door to the car because of great difficulties in handling transitions, or spending the entire day in their own world stimming away, or whose only form of communication is a piercing scream or an endless repeating of TV commercials or soundbites from videos, because that is your autistic child's 'natural state of being'???

Poppycock. I don't accept these behaviors in my neurotypical child, and I certainly won't accept them in my autistic one. While I am certainly more sensitive to the fact that in most cases my autistic child doesn't behave the way he does because 'he wants to' or 'because he's testing the limits', but because he truly can't help it, I am not willing to accept these behaviors as his 'natural state of being'. But because I chose to address those behaviors through biomedical treatments, I am trying to 'fix' my child???

So why the venom that is being directed at the biomed-ers (and yes, I know that the other 'side' gets as much venom thrown at them from 'our' side - and this makes me just as frustrated and sad)? What truly underlies this almost obsessive need from some of those in the 'biomed is hocus pocus/voodoo science' camp to discredit anything we are trying to achieve?

To put things in perspective, I certainly don't want to move toward a situation where every parent whose child is diagnosed with autism gets handed a referral to a 'chelation' clinic. Chelation is something that, in the right circumstances and under proper and knowledgeable medical guidance, can greatly improve the quality of life of some kids (both autistic and neurotypical - after all, let's not lose sight of the fact that chelation is a well-known and well-accepted treatment modality for lead poisoning, drug overdoses and Wilson's Disease, just to name a few). Chelation however should never, ever become a 'let's do this for every autistic kiddo' treatment. Just like chemotherapy or radiation should never (have?) become the 'let's do this for every cancer patient' treatment. Or that ABA or Verbal Behavior or RDI should (have?) become a 'let's do this for every autistic kiddo' treatment. The child's needs, first and foremost, regardless of his or her autism, should always dictate the treatment modalities that are being pursued.

But what would be so wrong with a situation where a parent of a child that has been diagnosed with autism gets handed an information package that describes the various biomedical approaches that may, but not necessarily will, help their child? Or to provide the parent with basic information regarding diet and the impact that dietary changes could have, and some tips on how to get started? To provide the parents with at least a few pointers about where they could go for further information, so said parent can make an informed choice? Right now, most parents are not even given that basic right of choice as they are not even aware of any of the biomed stuff until they stumble across it by accident. And then they have a looong, uphill battle to fight, and will be subjected to much ridicule and accusations along the way . For God's sake, like it isn't hard enough already!

What are those that proclaim 'biomed is hocus pocus/voodoo science' so afraid of? That some of this stuff may actual work and may significantly improve the child's quality of life, and that thereby yes, there is more that can be done to help an autistic child beyond making sure the child gets the allotted ABA time administered by the right therapist? That yes, in quite a few cases, significant 'relief' can be achieved by something as 'simple' as cleaning up your child's diet and giving them specific vitamins, minerals and amino acids? Or that, oh my gosh, there may actually be something to the theories that this crazy, polluted, fucked up world we live in is actually poisoning our kids? Well folks, get your heads out of your asses, uh, the sand, and grow up!!

Or is it the idea of actually taking control of your child's well-being that is so scary, as opposed to relying on a medical doctor that spends maybe 10-15 minutes once a year with your child, but who does have that 'all knowing', 'all powerful' M.D behind their name? I don't discount the fact that almost every parent of an autistic child has consulted numerous specialists and experts, and that the time these doctors spend with your child is significantly more than 10-15 minutes, but still, these doctors are not all knowing, and you can't rely on them to always have your child's best interest at heart. They are still people, they still make mistakes, they still may not be up on the latest research, or they could plain old be in it for the money (or the kickbacks and perks that the big pharma is so eager to provide).
That doesn't mean that you won't find the same problems within the community of medical practitioners that refer to themselves as DAN doctors. There too, as in any medical specialty, are quacks and profiteers that are out to make an easy buck. Fact is, when you have a child with a chronic illness or permanent difability, you HAVE to take control and become an 'informed customer'. Regardless of what treatment modalities you decide to pursue.

I also don't discount the fact that there is, as of yet, not enough independent, peer reviewed published scientific literature (I make the distinction here between the availability of published scientific literature and the availability of scientific evidence; they are NOT one and the same) that supports the effectiveness of the various biomed treatments. But maybe that is because the naysayers keep looking for evidence that these biomed treatments help treat autism. Once again, most of us biomed-ers are not treating autism, we are treating our children's underlying medical problems!! Medical problems for which there IS independent, peer reviewed published scientific literature as to what helps and what does not. An example here - we now know that my spectrum kiddo most likely has Celiac's disease (one of many medical problems that he is dealing with, in addition to his autism). A well-documented treatment for Celiac's disease is a diet that is completely devoid of gluten. If my child were neurotypical with suspected Celiac's disease, no doctor in their right mind would have told me that 'there is nothing to the fact that diet can have an impact on your child's well being'. But this is exactly what I was told when I brought the possibility of Celiac's and a gluten intolerance up for my autistic kiddo. Going gluten-free has made a world of difference for him - yes, it has cleared up quite a few of those symptoms that are described in the literature as 'typical' for Celiac's. But low and behold, it has cleared up quite a few of his autistic symptoms too (and no, this is not a mommy's need to see change where there is none, or the result of the placebo effect of a parent feeling more empowered as she is doing something and therefore becoming more accepting of her child's autistic behaviors).

Unfortunately for my kiddo, the fact that none of his previous, well meaning, but more 'thinking inside the box' doctors picked up on the potential for Celiac's has left him with a lot of digestive damage and a severely impaired nutritional status, and going gluten free was just the beginning of our journey into 'diet land'. Casein had to go as well - and to be honest, an inability to digest cow dairy that likely has been present since birth, is most likely what started my son's digestive issues and subsequent regressions. Again, his previous, well meaning doctors did not pick up on the fact that my son's extreme colic may actually have been a sign of a serious allergy, as opposed to 'well, some babies just have colic, they eventually grow out of it'.

Between the havoc that an inability to properly digest cow dairy and gluten have wreaked on his digestive system, overall metabolism, and immune system, we are now in a situation that he is not able (and may never be able again) to digest the majority of the foods he used to eat (we currently have a total of 17 foods, in addition to all things cow dairy and gluten that we MUST avoid). And sadly, if I hadn't found the support and understanding of a doctor that is willing to think outside of the box and see my son's medical problems separate from his autism diagnosis, my kiddo would still have been suffering as much as he did before we discovered the extent of his digestive issues. And this goes for the various other medical problems we are dealing with too. - which are all diagnosable and treatable. And once again, if my child were neurotypical, nobody would think it 'wrong' that I would seek treatment for these illnesses. But because my child is autistic, treating these illnesses is 'fixing his autism'? Bullock.

I do not discount the fact that going down the path of biomed interventions, of which in my honest opinion, a good hard look at your kiddo's diet should be your starting point before you do anything else, is not an easy road to take. The thought of having to overhaul my kiddo's diet, to have to take out those foods that he would actually eat without a huge fight, scared me shitless. But that was MY issue, MY fear, MY worry about the additional work it would mean for ME on top of everything else. For the sake of my child, I had to overcome those feelings, and after getting a good kick in the you-know-what from other parents who were in the same boat as I, I did overcome those feelings, rolled up my sleeves and got to work.

Nobody in their right mind would continue to let a diabetic child eat those foods that are bad for them, so why is revising my autistic child's diet to take out those foods that are bad for him looked at so differently? Why am I fixing my child because I choose to administer at home (without the constant supervision of an all knowing MD - the nerve, I admit) custom vitamin, mineral, amino acids and other supplements to my child to address certain deficiencies - deficiencies that were detected by diagnostic testing, I should add? Why am I fixing my child because I choose, using natural detoxifying agents and treatments of which the benefits are well known from medical traditions much older than our western one, to address his lead, arsenic and mercury poisoning? Once again, if my child didn't have the autism diagnosis, no doctor in their right mind would let my child walk around with the levels of heavy metals he's currently got in his body. And I can't emphasize this enough - I am not addressing his heavy metal load to cure or fix his autism. I am doing this because these heavy metals are making him physically ill and damaging his neurological systems, and as a result impact his quality of life and stop him from reaching his full potential (we're all familiar, or should be, with the fact that lead, arsenic and mercury are neurotoxins, right??).

What really gets to me is the presumption that those of us that pursue biomed must be desperate people, not able to cope with our child's 'life long sentence', and willing to do ANYTHING to have that 'perfect child that somebody or something took away from us'. Wake up people. While I am sure that there are folks that are being 'lured' into biomed under the false pretense that the child can be cured, I am sure just as many have been 'lured' into the use of psychophindependentc agents (that were not designed for the autism population, and almost never properly tested in the age group for which they are prescribed - talking about the lack of indpendent, peer reviewed, published literature eh?) under that same pretense.

Most of us that pursue biomed really do do our homework, and spend countless hours researching, reading, questioning, calling medical professionals for advice, seeking out experiences of other parents, etc. And shame on us if we didn't. And shame on you if you allowed your child to be put on drugs, or to be enrolled in an ABA program, just because it was recommended by an 'expert' without doing your research.

When I started on this journey about 2 years ago, I would never have thought I would have ended up where we are now. When we started, I was firmly convinced that 'all' we were going to do was dietary changes. That was it. No vitamins, no amino acids, no probiotics, enzymes or yeast treatments, no immune system support, no detoxification. I was firmly convinced that MY kid had none of the issues that warranted these kinds of 'ridiculous' treatments, that all that was needed was a good clean up of his diet.

Boy, was I wrong, I've learned so much since. And that's it - you truly need to learn about these interventions, you need to take the time to understand, to put the pieces of the puzzle together, to not expect results overnight, to not jump on the next treatment that comes along, to take it one step at a time. But isn't that true for all the other interventions that ARE routinely being recommended for our kids?

I know that there are several of you that have tried dietary interventions or other biomed interventions and found that it just didn't work for your kiddos. I commend those in that situation for giving this a try, and I am sorry that it didn't make a difference. I encourage you though to keep searching, to keep learning, to keep questing, until you find something that does help in improving your child's quality of life, either within the biomed framework or elsewhere. And if you've already found it, congratulations.

For those of you however who 'dish' biomed, because you 'just don't believe that it works', or because 'there just isn't any evidence', or because you 'can't imagine taking the foods that your child loves away', or who say that 'the diet is just not for me because it'stoo expensive or takes too much time, or is too inconvenient' - stop your belly-aching. If you just don'twant to pursue any of it, fine, just say so. But then shut up, and stop attacking those of us that do.

If you're 'on the fence', doubtful or scared, fine, just say so. We were scared and doubtful too when we started (and we still freak out at least once a day). But we were more scared of what would happen if we didn't. Ask questions, challenge, and don't take any of it at face value. Gather your information, and then make an informed decision. The emphasis is on making an informed decision. Don't fall for the empty rhetoric on either side of the 'Great Divide'.

Sure, I know that some of you will question my motivation for going biomed. 'Is she truly doing this to address her son's medical issues, of because she so desperately wants a normal child so HER life can become easier?' Let me tell you, if you think that I am spending on outrageous amount of money on my son's foods and supplements, spending countless hours in the grocery store reading every friggin' label, cooking all foods that are being consumed by my children from scratch, spending hours doing medical research and questioning my sons' doctors, having medical bills coming out of my ears, making sure that my sons take all their vitamins and supplements, and finding myself in the position of having to understand and adjust on a daily basis my son's messed up biochemistry (while constantly keeping a very close eye on his little brother's metabolism) so MY life can become easier, then you truly ARE clueless.

What I want, and what any parent wants, is for my child to be happy, healthy, and able to reach his full potential. That is his birthright! Somewhere along the way, something went off track in him being able to achieve that birthright. It is my job as his parent to help him get back on track. And that job is tough enough without having to defend or hide the fact that we've decided to follow a track that is off the beaten path. I know that some of you feel uncomfortable being in the presence of those that do biomed, as we make you 'feel guilty that you may not be doing enough' (a feeling that you maybe should take a good, hard look at, hmm?). Well, we are getting just as uncomfortable about constantly having to explain and defend that 'no, we are not conducting horrible experiments on our kids or treating them as little lab rats', or 'wanting to exorcise the autism out of our kids'.

Really, deep down, we are all trying to do the same thing, which is to take care of our kids the best we can. Where we fundamentally differ, I think, is in the believe that not all symptoms and behaviors our kiddos display are attributable to their autism, but are there because the kiddo has underlying medical illnesses that in some, not yet well understand fashion, contribute to their autistic behaviors. Why not explore this, why not understand this better to see if that may be the case for your child? Really, what does anybody have to lose in trialing whether or not removing cow dairy, gluten or soy, or whether adding certain supplements, makes a difference?
And if you're not comfortable doing this on your own, by all means, contact that nutritionist or allergist or whomever you feel can guide you.

I for one am much more comfortable with the current treatment path I am pursuing for my son than I will ever be (and I may be forced to eat those words in a few years when the hormone shit storm starts to hit) with psychopharmacological drugs or behavioral retraining.
And so is my now almost 8-year old son..

And then I fell on my face - hard!!!

I know, I know. Taking care of kids with special needs is like running a marathon, not a 50 yard sprint. I am really good about giving this particular piece of advice to parents of newly diagnosed kiddos, but I am absolutely TERRIBLE at taking my own advice. Well, looks like Mother Nature decided that enough is enough and she slapped me over the head hard enough to make me fall on my face.

Typically around this time of the year (late fall, early winter) I have trouble maintaining my insane pace anyway, and I become more prone to respiratory problems. This year was no different and the coughing fits started like clockwork around early November (2005). I tried to be good, took my vitamins, took my antivirals, took my immune boosters, even took a course of Zithromax at the end of 2005, but I wasn't able to quite clear things up.

This weekend my upper respiratory 'bug' came back with a vengeance. And on Tuesday morning, while driving my boys to their schools, I had a coughing fit that was so bad that I almost blacked-out behind the wheel. Finally decided that enough was enough, and off to the ER I went, where I was greeted enthusiastically (I am on a first name basis with most of the ER staff by now, as I am a frequent visitor with either one or both of the kids - too bad they don't do frequent visitor points or something - I would have earned a free stay by now).

Apparently, my presentation scared enough people that a full work-up was ordered. I was tested for pneumonia, pertussis as well as heart problems - thank goodness all came back negative. After spending about 3 hours in the ER coughing my lungs out (to the point that the lady next door from me with emphysema offered me some of her oxygen as I sounded worse than she did, LOL), the verdict was that I have acquired myself a 'lovely' case of bronchitis that, unfortunately, will require another course of antibiotics to try and regain some measure of control. So, I'm back on Zithromax (and hope that this course will do more for me than the last one) and I have an inhaler to help deal with the coughing fits and resulting shortness of breath.

I ended up not making it into work for the remainder of Tuesday as well as Wednesday. I was barely able to get the boys up in the morning, get them fed and dressed for school and out the door - getting that done wiped me out so much that I was in no shape to get in the car and start the commute to work. Thank goodness my boss is so understanding about it all (as my attendance record in the last quarter of 2005 left much to be desired because of challenges with the boys), but it left me with much stress as my employment situation is dicey at the moment. Can't get into more specifics there right now - we (my boss and I) are trying to get to a workable solution. Will post more once I have more clarity.

Am now on my 3rd day of Zithromax (I don't like it, but it's a necessary evil at this point) and I think it is starting to make somewhat of a dent in 'the bug'. I definitely have a die-off going on, as I am absolutely wiped-out beyond description tired (and itching like crazy). I can barely get myself in and out of the car without seeing black dots and purple balls. And anytime I sit down for more than 2 minutes while not keeping myself mentally occupied, I find myself nodding off.

I know that I have to slow down, and right now, I have no choice BUT to slow down. I am not liking it one bit though (as to be honest I am an adrenaline junkie of the worst kind - mentally I thrive on going at breakneck speed, physically is apparently a different story altogether). However, as we will be starting the second block of an intense Auditory Processing/Occupational Therapy program that we are doing with Salamander in less than 1.5 weeks, I MUST make sure that I am well enough by then to handle all the physical and emotional stress that comes with getting Salamander through the program (which, not in the least, involves me driving an extra 110 miles a day getting him from school to therapy and back home, and wreaks absolute havoc on my attempts to maintain a consistent schedule at work).

Oh well, this too shall pass. But I'll be putting my, typically boundless, energy, for the next couple of weeks toward healing myself instead of using that energy to blog about our continued adventures in BiomedLand (as we are about to embark on a few new adventures; one of which will involve a trial of Transdermal Low Dose Naltrexone to attempt to regulate Potatey's and my immune systems (I'd like to trial it for Salamander too, but have decided that Potatey gets priority treatment this time), another will involve a good hard look at Salamander's current diet to investigate whether he has an oxalate problem that is preventing his gut from healing as well as it should).

Salamander has had an absolutely awesome 1.5 weeks though - he is very together, calm and even keeled (except for a situation yesterday morning that, to be honest, I brought on as I wasn't my usual patient self). Homework has been a breeze - he needs a fair bit of prompting to get started, but once he gets started, he is able to maintain focus and attention with a minimum of verbal chatter. His handwriting is improving by leaps and bounds, and so is his ability to sort through his thoughts and get them out on paper in an order that actually makes sense to others than himself. I firmly attribute these changes to the first block of the AI/OT program I briefly mentioned earlier (I will blog about the program and what it has/is doing for Salamander in a separate blog entry). It is so nice to see him being so comfortable in his own skin, and to see him glow with pride over his accomplishments. His 2nd grade teacher even sent a note home last week stating that he has been very engaged and happy and cooperative in class. She ended the note stating that she hoped that this development would continue as Salamander 'is such a wonderful boy that has so much to offer to the world' (the note is definitely a keeper!!). Quite different from some feedback I got from school earlier this year, implying that Salamander was so distractable that he was becoming somewhat of a behavioral problem and that as a result of his distractability he only showed 'average potential in acquiring the 2nd grade curriculum' (which I know is absolutely bull s###, considering the kind of intellectual powerplays this kid pulls off at home).

I so hope that this development continues. It would indicate that after almost 2 years of working my a$$ off in developing a comprehensive program for Salamander (which combines biomed treatments with more conventional remedial treatments such as speech, social skills, vision therapy, OT, auditory integration etc), there is a glimmer of light at the horizon.

Potatey on the other hand does give me some worries currently. He is doing very well in acquiring the expected developmental milestones (socially and emotionally he is lightyears ahead of his pre-school peers, this child truly learns by osmosis and gets a lot of stuff just by observing me and Salamander work together). His allergy situation however is anything but stable. We had another nasty 'allergic reaction to something' episode last week - I think I have pinpointed soy and sheep cheese as the culprits. So out of his diet these two foods went, and he is doing much better now. It worries me that, at the age of almost 3 and despite me being very careful with his foods, he appears to be developing additional food allergies. Tells me his immune and metabolic systems are fragile too, and require just as much attention as his older brother's. So it's time that I put dedicated time and effort in developing a biomed treatment plan that is tailored specifically toward Potatey's needs (as opposed to a scaled down version of Salamander's plan).

It's always something, isn't it?

P.S. Shit, reading back over my previous entry I realize that I haven't posted anything yet describing the boys' current biomed treatment plans and what issues I hope to address with these plans. A post describing the trips we've taken so far into BiomedLand will follow soon, I promise...

Sunday, January 15, 2006

My two Raisons d'Etre..

Here are my two sprouts...

Salamander (whom I swear was a dolphin in a former life) on top and Potatey right below.

The Million Dollar Question

A while ago, an article was published in the Boston Globe Magazine that described the travels of another family in BiomedLand. The article created quite some debate all over the webosphere, and posting comments by Dr. Deth in response to the Boston Globe Magazine article on one of my discussion boards drew the following question from another parent:

What is most impressive of the reply [Dr. Deth's] is that there is hope that if you can reverse the effects of the mercury exposure then you can reverse the autistic effects. Is this true? If it is then you can have an amazing effect of how autism is treated.

Attached is my response to this:

Oy, of course you HAD to ask the million dollar question. Good for you for not being afraid to ask it. Some believe that autism is mercury poisoning and that yes, once you address the mercury problem, the autism disappears (if you want to know more about this particular philosophy, check out either theGenerationRescue web site (, or the SafeMinds web site ( Others believe that autism is just a different neurological wiring which should be accepted and that any thoughts about treatment are a way to 'fix' the person or turn the person into something that goes completely against the person's 'natural state of being'.

Everybody please hold the rotten tomatoes on either side of this debate, as I am just going to express how I look at things.

I personally believe that neither belief gets it right. I believe that it is so infinitely more complicated than that. Hence the puzzle of autism, right?? I personally believe that there is a supgroup of autistic kiddos that have an underlying physical disorder - be it a metabolic disorder, be it immunologic, be it neurobiological, be it a detox disorder, be it brainchemistry, be it a genetic defect in RNA production, be it whatever - that results in the kiddo displaying the more difficult aspects of autism - the tantrums, the rages, the incessive stimming, scripting, smearing of unmentionables, the spaced out kiddos, the self injurous ones, the head banging, the kiddos that are totally withdrawn and shut down and that you just can't seem to reach.
And I especially believe this [the presence of an underlying physical disorder] to be true for that group of kiddos that develop 'normally' (I hate that word) for several years and then something happens, and you see that child that you knew slowly 'disappear'.

I also believe that some of the unique and fascinating characteristics our kiddos display are indeed the result of a different neurological wiring and that that aspect should be cherished, nurtured, respected, and very much encouraged (I live with the 'mad scientist' who needs to figure out in great detail how everything works and who needs to experience 'up close and personal' why it is you can't combine certain aspects of physics).

It's been almost 2 years since my son was 'officially' diagnosed as having an autism spectrum disorder. The 2.5 years or so prior to that were, while sometimes great, frequently hellish as we just didn't know what to do with him (and we have another younger child that is neurotypical for which the same parenting techniques work just fine, so whatever was going on with my older one wasn't the result of inadequate parenting). The past almost 2 years in a way have been just as crazy, as while we now do have a, in my mind rather simplistic and too easy, explanation for why he does what he does ('well, he's autistic'), I cannot find myself be satisfied with that explanation.

I have noticed pronounced differences in my son displaying those more troublesome aspects of what is called autism depending on how well his metabolism works. I have found out through trial and error that gluten, casein, soy, bananas, eggs, nuts, yeast, canola oil, onions and many other foods, as well as artificials colorants, additives, emulsifiers, pesticides etc are literally 'brain poison' for him. I have also discovered that there are pronounced, confirmed by diagnostic testing, deficiencies in my son's abilty to produce certain digestive enzymes, and in his ability to produce and/or retain critical vitamins and minerals and that as I start addressing these deficiencies, remarkable things are starting to happen. And I can go on like that for a while.

For my particular child with autism I have discovered that there is a physical reason for many of what traditional medicine considers 'autistic presentations' (the stimming, the scripting, the no eye contact, the hyperactiveness, the gastrointestinal distress, being zonked out, being intolerant or hypersensitive to pain, sounds, lights, the bladder and bowel control issues, not being able to read or express emotions). I have also discovered that there are 'hardwired-in' neurological reasons for some of the other presentations. And I once again circle back to the 'puzzle of autism'.

I for my particular child (as well as for my NT one with food allergies) have decided to explore the biomedical aspects of what is called 'autism'. You can find a lot of information at the Autism Reseach Institute website, I honestly admit that the short hand for the biomed protocol, aka DAN protocol where DAN stands for Defeat Autism Now, makes me crinch every time I hear it (as does CAN or Cure Autism Now, by the way or Defeat Autism Yesterday), as I am personally not of the belief thatI am defeating or curing autism in my son. What I am trying to do is to address the underlying PHYSICAL illnesses that this child is suffering from (and yes, my child SUFFERS when I give him those foods I previously mentioned, and no, I am not willing to accept that this is 'because he's autistic'), just like I would with a neurotypical child.

I have found no interest within the traditional medical community to help this child, as all of his symptoms are deemed the result of his 'autism'. I have found great resonance, patience and genuine caring within the biomed community and, more importantly, that all important willingness to see the symptoms that my son displays as separate and distinct from the autism diagnosis. Just like NT kiddos have the 'right' to have a physical disorder or disease that the traditional medical community will then try to 'cure', so does my kiddo with autism. And yes, I have great hope that as I reverse the effects of his particular set of physical disorders that I can reverse those autistic effects that are stopping him from being a happy, healthy, self confident, fulfilled child.

Back to the question, is autism mercury poisoning? I just don't know. I don't think anybody knows for sure, but it is a question that deserves all the attention it is getting right now. All I know that some of our kids have underlying biomed issues that, once you address these, you see the child change. So I firmly believe that for a particular subset of kids, the answer (or 'treatment') lies within the DAN protocol. And I can tell you from experience that there are numerous scientists and MDs within the DAN community that, just like Dr. Deth did in his response to Dr. Sanghavi, can provide a similar well formulated, well researched explanation on what the cause is for autism. And they probably all get part of it right, and many more parts wrong.

The problem I have right now is that they all seem to focus on one particular aspect of what they believe the cause is. I believe that there are many, many causes (or triggers) that cross over into many areas of medical and scientific research. I would love for all parties involved (biomed and traditional, alternative and those that believe 'only meds and ABA will work' to develop a lot more respect and interest in each others view points and work together to find out what is going on.

A girl can dream, can she not?

So what started this?

To Blog or NOT to Blog, that IS the question…

[My apologies, Billy Boy, for the rip-off. This particular sentence though, has been stuck in my head ever since I started thinking about whether I wanted to start a Blog to get all those thoughts out that are rattling around in my cranium (and taking up precious space… yeah, yeah, yeah, right next to those loose screws and cobwebs..)]

Here’s the thing. I know that for my own sanity (what’s left, that is) I need to get certain thoughts, feelings, opinions (oh yeah, opinions aplenty) out. I have kept diaries in the past (with great benefit to myself and those that have to put up with me), and MUST do that again, considering all that’s currently going on in my life. I have written bits and pieces over the past few months on topics that I feel very strongly about. And I have been told by several people that I should find a way to get my thoughts (which is a really NICE way of referring to my opiniated rantings - thanks again, gals) in front of a broader audience. And that’s where blogging would be perfect.

But ya know, call me chicken, I was raised with the belief that thoughts are, well, private. Then again, I was raised with a lot of beliefs that I no longer hold as Sacred Truth. And really, not much in my life is private and holy anymore. Kinda happens when you have a special needs child.

Which brings me to why I need to find a way to get my thoughts, feelings and opinions out. Upcoming February, it’ll be two years ago that my beautiful precious oldest boy was diagnosed with an Autism Spectrum Disorder, specifically Asperger’s Syndrome (at that same time, several other alphabet soup difabilities were attached to his name as well, but more about THAT another time). He was just shy of his 6th birthday at that time. I had suspected for quite a while that this child marched to the beat of a different drummer, and in a way it was a relief to now have a framework in which I could understand that different tune. Getting his diagnosis, however, did start a roller coaster ride into the world of psychiatrists, neuropsychologists, speech and language pathologists, occupational therapists, biomedical interventions, conventional therapies, special education, IEPs, aides, FAPE, etc, etc, blah, blah, blah.

And to be honest (that's what this blog is all about - honesty), a world that I had never, ever expected to find myself in. A world that frequently leaves me confused, frustrated, exhausted, roaring mad, exhilarated, happy beyond belief, in awe, and with the desperate (?) hope that there IS a purpose to all the madness. A world that I don’t regret having entered, as it has changed me profoundly. For the better, I think.

But a world nonetheless that leaves me with precious little time to pause and reflect, to take care of myself, to spend time with friends to bitch about, uh I mean, ‘discuss’ how all that’s going on makes ME feel. Which brings me back again to needing to start a diary, to not EXPLODE!!

OK, some introductions. I am 36 years old (Taurus), mom of two wonderful boys that keep me very, very busy. I also have a full-time job (yeah, one of those that requires you to spend 40 hours or more away from doing what you really want to do, all so you can pay for what you really want to do, but don't have time to do - did I confuse you yet?) in the medical device industry, and you could say that I earn the majority of my salary by writing (very technical, not very exciting, writing).
My oldest boy, I’ll refer to him as Salamander (his nickname as a baby), as I mentioned has Asperger’s, and will be 8 years old in March (he is Aries). My little guy, I’ll refer to him as Potatey (rhymes with his name), will be 3 years old in March as well (he is Pices).

In my spare time (uh, those 4 or so hours a night that I am supposed to be sleeping), you can find me ‘hang out’ on various message boards that discuss topics related to autism, and that’s where I have gotten myself in trouble, uh, 'noticed' for various comments and opinions. I've been told by various people that most of my braindumps either make people stand up and cheer, or piss them off, so what the heck, if I am 'comfortable' making an a$$ out of myself on a few message boards, then I may as well go all the way and do it 'in public'.

Couple of things though, mainly to manage my own blood pressure. This blog represents my points of view based on my experiences, my thoughts, my opinions, and hours upon hours of reading, researching and talking to other folks that are 'in the know' (those that still want to talk to me, that is :) ). If you share my opinions, great. If you don't share them, that's great too. Constructive comments are always welcome, as are invitations to discussions. Provided that these discussions are conducted in adult fashion - I am not interested in discussions along the line of 'biomed is evil, and why can't you just accept your child the way whatever Power-in-the-Universe (with a perverse sense of humor, I may add) made him'. You can have those types of discussions elsewhere. You will also not find a whole lot of information as to the scientific basis or scientific 'proof' for the biomed interventions I have decided to pursue with my boys. There is plenty information out there on the web - go find it (if you have a specific question however, and you ask nicely, I will gladly point you in the right direction). I am also not interested in a debate as to whether autism actually exists or whether autism is 'simply' mercury poisoning - my belief is that, since mercury is a neurotoxin, it's got ABSOLUTELY no place being in anything that's being administered to our babies. End of Story.

What you will find is an honest account of why I decided to pursue biomed, what interventions we are pursuing and what is working/not working. And if the information I share helps one more parent to give biomedical interventions an honest try, well, that's all I can ask for.

To those of you that are already on the trek into BiomedLand with me - Glad to have you here. There truly is comfort and strength in numbers.
For those of you that haven't started the trek yet, but are about to - Welcome, and we love to have you with us.
For those of you that have reviewed the option of biomedical interventions but decided for whatever reason not to pursue - We will miss you, and we'll make the trek without you then.
For those of you however that are of the opinion that all biomed interventions are evil/voodoo science and geared towards fundamentally altering our kids way of being - Go away, the trek is hard enough as is, and we don't need you to make it even harder.

Stay tuned for future rantings.