Saturday, March 31, 2007

A GOOD day!!!

Salamander turned NINE today... And we are having a GOOD day!!!!!

I'll let these speak for themselves....

Well.. I just HAVE to say something about the one immediately above. It is HIGHLY unusual to see my guys sitting in this close proximity and work on something TOGETHER without shouting matches or fisty cuffs....

I AM psyched!!!! Early birthday present for me perhaps????

Wednesday, March 28, 2007

"Why we parents are so angry"

Almost immediately after I published my previous post, the attached came in over e-mail. I was originally going to add it to my previous post, but this deserves a post of its own.

I can't take credit for any of the below. The credit goes fully to Nancy Hokkanen. I could have written every word....

Posted to the public Yahoo Listserv "Evidence of Harm" by Nancy Hokkanen on 3/27/07:

"The following paragraphs might help explain the harsh tone of some parents on the EOH listserv and others. It’s difficult to keep your emotional bearing when the facades of reality rise and fall so chaotically after your child is given the psychological label of autism spectrum disorder.

First, the psychologists recommend behavioral therapy. If you can afford $60-$100 an hour, it buys quiet time for the parent and maybe your child will learn some basic skills like holding a crayon. It’s more likely he’ll model hitting and head-banging from the other kids.

You take your child to the local research university. They get paid to watch your child have tantrums. They issue epidemiological studies. They take up office space and tax money and oxygen.

Next, the psychiatrists recommend psychotropic drugs. Maybe some symptoms will abate for a while; maybe the pills make your child regress. Maybe Risperdal makes your little boy gain weight and lactate. Maybe Adderall makes your child psychotic and your neurologist says sagely, “Usually if one doesn’t work, the other one will.”

Incredulous that there’s no magic pill (this is America!), you search the Internet for options. You learn a new lexicon involving biochemistry – what the h*ll is the Krebs cycle, anyway? – and dodge around shady sites with suspect claims. Somehow you find the websites for Safeminds, No Mercury, Generation Rescue, Put Children First, Autism Research Institute, Boyd Haley, PhD’s Thimerosal links, and others.

When you return to your physicians with questions, they reach for the old standbys– the PDR, the AMA and AAP journals, the CDC PR sheets. If you ask about “alternative medicine” instead of “best practices,” you are immediately labeled as a kook. If you are inquisitive enough to procure lab test results from Great Smokies or Great Plains or DDI, the labs’ credibility is called into question.

You try biomed and some things work but others don’t. You record symptoms and side effects and constantly read and second guess yourself. Your shelves are full of pill bottles that your child may or may not be able to swallow. The costs are not covered by insurance companies, though you write letters to the HMO board.

Your son’s medical tests show the biomarkers of mercury toxicity and you consider chelation, but you worry about whether the DAN! protocol redistributes mercury as is claimed on another biomed listserv. Meanwhile children with lead poisoning get sympathetic media articles, government funding and occupational physicians to guide the detoxification process.

You try to discuss biomed with other parents in your region, but most are comfortable with abrogating responsibility for their child’s health to so-called experts. Their helplessly vague attitude is that if something is really wrong, someone will do something.

Your friends and family members try to help you by downloading lame articles from the Internet – unabashed propaganda from Dr. Paul Offit, or the pronouncement from the IOM, or reassurances from the CDC. You try to explain about conflicts of interest, the 2001 evidence of predetermined IOM conclusion, the missing Vaccine Safety Datalink. But your loved ones’ eyes glaze over as your revelations threaten their carefully constructed reality. You’ve found their limits.

You schedule meetings with legislators, but they are busy trying to comprehend the implications of dozens of bills simultaneously. You have a mercury hearing at your state capitol, but the time is insufficient to explicate the data. And you’re competing with blatant misinformation from pharma-funded lobby groups posing as citizen advocates. You show up in your ancient suit and Payless shoes while the pharma lobbyists stroll the Capitol in Brooks Brothers and Bruno Magli.

You meet with your state Attorney General. He frets about his campaign image. You meet with the Department of Health. They say things in private that they won’t in public. You meet with the Governor’s Health Aide and hand her a one-inch-thick stack of papers on mercury. She says, “I’m not going to read all that.” You suggest she find someone who will.

You dredge up cost statistics and incidence statistics and prognosticate -- because even though your state has autism specialists, no one is noticing that 1 in 80 boys has a developmental disability and 1 in 5 receives special education services. Yoo hoo, anyone home?

You're even more demoralized and need someone to talk to. When you talk with your pastor, he smiles and nods and says he’ll talk to the bishop. But unless you are a Methodist, nothing will happen soon and besides, you have to attend meetings wondering why membership is decreasing though you don’t welcome gays and people with disabilities.

And somewhere in here you are fighting the County to get services, fighting the public school to get services, fighting and fighting and trying to maintain some sense of pride, dignity and order in your home that’s been turned ass over teakettle, figuratively and literally, by the random and irrational behaviors of a child who may or may not be toilet trained and may or not be healthy.

By this time you don’t trust anyone but other autism parents who are using biomedical treatments, a few legislators and researchers. But within this alpha group is often divisiveness and anger to spare, born of painful knowledge and negative experiences.

You see the marchers outside abortion clinics and finally understand their conviction in protesting a practice they find morally abhorrent. But when you march against mercury in vaccines, you run the risk of being labeled a “hysterical desperate parent” by people inconvenienced by your family’s truth.

The inconvenience will only increase starting in 2010, and in 2015 all the little children overdosed on mercury in 1997 will be turned loose on the dole of American taxpayers. Combine that with the Baby Boomers and Iraq war debt, and envision that financial reality.

The body count is appalling – helpless children who wander off and drown, or are murdered by family, caregivers and strangers. Thankfully so far no parent has taken up a gun to make a public statement about vaccine mercury’s link to autism – perhaps realizing that going to jail deprives the child of a primary caregiver.

I can understand why no public figure wants to be responsible for setting off a public furor. I don’t see the Federal Court relishing that role, either.

In all this, there are two consistent truths:
1. Even at miniscule concentrations, mercury is a neurotoxin.
2. People make mistakes.

People are basically selfish. The key to engaging public discourse is to show people their personal investment in the autism/mercury issue – with their health, and with their wallets.

And with all these realizations and disappointments whirling in your mind, you keep them to yourself and shield your child from any sense that he is not welcome in this world. You give advice and praise and love, and if you’re lucky they give love back, and that has to be enough."


I was going to write for a bit last night, but ended up passing out on the couch... Which was kind of a blessing in disguise, as I've been having a hard time sleeping as of late.

So I had my first public speaking gig about my experience with implementing Dr. Yasko's genomics based protocol for my two monkeys. A very dear friend of mine has started a local biomed interventions support group and had asked me if I wanted to tell the group about how things have been going for us. She has asked me plenty in advance, but of course pulling my presentation together became the usual last minute scramble.. I had a blast though, the group was very interested, had some great questions, and it was just so nice to yack for a while (without too many interrruptions LOL) about something that I very strongly believe in. I really hope I get an opportunity to do this again.. we'll see.

So I definitely started off yesterday still riding a 'high' from the eve before. However, as we all know, once you ride the rollercoaster 'to the top', you ARE coming down again.. And oh boy, I sure did.

Certain aspects of my personal life are imploding .... again. None of the issues are new, it's the same ole', same ole'. I guess I have been kidding myself in thinking that a few things were improving. And in all honesty, they were. But now things are rapidly sliding back to where they were at last year October. And I am getting very frustrated with myself for letting this drag on, for keeping myself and the boys on this never ending see-saw. Why can I be so friggin' decisive in every other area of my life, take my wins or my losses, and move on, but am not be able to do the same for these issues???

And as I spent a good part of yesterday struggling with this question, an e-mail from the National Autism Association came in with a link to this poll. Oy... I did submit my response, and I DO think that the estimated number is very, very real.

Now today, I am still struggling with the issues I eluded to, and I am sure I'll continue to struggle with them for quite a while longer. But it is getting to be decision time, and I need to stop procrastinating....

But as people say 'After rain, there will be sun." A few very interesting things came my way. A link to Larry King's piece on autism (yeah for Toni Braxton and Suzanne Wright!!), and David Kirby's blog post in response to a comment that Katie Wright (Suzanne's daughter and the mother of Suzanne's grandson with autism) had made on the Evidence of Harm listserve. Things are ever so slowly changing for our kiddos. And that is a very good thing!!

And this will need to give me a boost to get through today. I will have a breather from the issues eluded to for the next few days, which will be good. And then Salamander will turn NINE this Saturday!!

Monday, March 19, 2007

Hyper focus.. variable attention....

Well, as of Salamander's most recent neuropsych evaluation (which, by the way, WAS conducted during an intense mercury/lead/nickel detox cycle), we are now in the dubious position of having added the ADHD label to the alphabet soup......

It's no secret that spectrum kiddos have the ability to hyperfocus on their topics of interest. And it is an amazing experience to watch that happen and see your child INDEPENDENTLY go off and find information on their topic of interest, study up on facts, retain said facts and be able to put a whole presentation together. At a level that would make a High School science or history teacher proud to have said child be his/her student (Salamander will be nine in a couple of weeks).

The flip side of that coin is that, if their interest in a particular topic is not quite 'there', getting them to focus requires the persistence of Sisyphus, combined with the patience of Job...

Now I had noticed a very gradual, very slow improvement in Salamander's ability to focus on things that are not in his immediate area of interest, the ability to maintain that focus, and the ability to multitask, since the beginning of February. I noticed it in.. what may seem trivial.. things like being able to sit on the bed and continue to put his socks on/get dressed while telling me more than I ever wanted to know about vulcanic matter.. Previously, the socks would have either been torn to shreds in his fidgeting hands while he's telling me about vulcanic matter.. or I would have had to put the socks/clothes on FOR him while he's telling me about vulcanic matter. I also noticed him being able to work for about 10 minutes straight on his homework without getting out of his chair every 3 seconds for a drink of water or a potty break, or without asking me a.. for him vitally important.. question every 3 seconds, that..unfortunately.. has NOTHING to do with the homework at hand (this is WHY two sheets of homework take 1.5 to 2 hours in our house.. Sigh..).

Then last week, 'variable attention' came back with a vengeance.. Now his UTMs from beginning March show him to be in mercury, nickel, thallium detox.. so that could be a contributing factor. He also fell victim immediately after February school break to a nasty virus that is taking FOREVER to get rid off, so I am sure that is contributing too. And I also discovered (see one of my previous posts) that Salamander was tasked in school last week with erasing the white board in the classroom at the end of the day. Oh yes, I can almost 'see' several of you cringe when you hear this.. all those lovely Toluene, artificial fragrances (aka phenols), and other 'harmless' solvents going straight to the poor kid's head.. Salamander's transsulpuration pathway is royally.. well, the polite phrase would be.... messed up (I am thinking something a bit more 'strongly worded'), and I have noticed before that this pathway gets even more fragile during detox, so yeah.. all of the above combined.. no wonder attention went to pot.

But being able to pinpoint potential reasons doesn't make it any easier.. for all players involved.

So Salamander definitely needed most of Saturday to 'clear' his system, and then boom, Saturday night, I could just see 'the fog lift'. And he was absolutely amazing, especially in the attention department, for most of Sunday (Potatey's birthday). Salamander put together two of Potatey's new Lego toys, he followed the directions step by step, while fielding never ending questions from Potatey, and never once lost his place in the directions. Asked nicely for help when he couldn't find the necessary pieces (as whirlwind Potatey of course had ripped open multiple boxes/bags of Lego parts and had thrown them all in one big pile). And (and this is HUGE) happily handed over the completed Lego toys to Potatey without fussing, whining or complaining about the unfairness of not having gotten the same toys himself, and happily engaged in pretend play WITH Potatey using his OWN Lego toys without trying to domineer or control the flow of play. I actually sat back and watched the two of them chatter and play and make more Lego constructions for well over 2 hours.. without having to even once step in to defuse an impeding World War. I didn't know WHAT to do with myself .... LOL

Then at 4.30 pm yesterday afternoon.. bam.... things fell apart again. Not entirely sure what happened.. I do realize that both boys did eat a lot of meat this weekend and definitely 'binged' on almond flour cupcakes yesterday.. so probably protein/ammonia overload (which can throw the previously mentioned messed up transsulphuration pathway into further disarray..). The screeching/screaming came back (Salamander does this 'ambulance wail' thing when upset, frustrated, and/or not feeling well) and ability to focus was lost again (yes, yes, I know I should have done a UTM to see what/if he's dumping more metals.. out of test kits and (until my contracting invoices get paid) out of money..).

And boy, did we suffer from 'variable attention' this morning!! Now Salamander has been going to some sort of school setting since he was 8 weeks old, and he's been going to places with a set start time for well over 3 years now. And for those 3 years, it's been the same routine every single morning.. and every single morning, at 8.20 am, an alarm clock goes off in the house to remind the boys that it is time to stop playing, put their toys away and get themselves to the bathroom for brushing teeth and a potty break. Now Potatey, when the alarm clock goes off, will yell 'time to get ready', will put his toys away, come into the kitchen, put his shoes on, etc, etc.. with maybe one or two prompts from my end (he only just turned 4, so the fact that it only takes one or two prompts is spectacular in my book).

Salamander on the other hand.. and it was very prevalent again this morning.. despite multiple 5 minute 'heads-up' warnings before the alarm goes off, cannot just put away his toys.


One toy gets put away, but another one needs to be moved, a third one needs to be touched, he needs to give me two hugs before he can go into the bathroom (I LOVE his hugs, don't get me wrong, I had to do without any hugs from him for YEARS due to his extreme tactile defensiveness.. ), then has to do a silly dance with the tube of toothpaste before he can put the toothpaste on the toothbrush, and then I have to watch him like a hawk and REMIND HIM every 10 seconds that he DOES need to brush his teeth (and not just chew on the brush and swallow the toothpaste..). Potatey by now is ready to go and chomping at the bit to leave.. It is now 8.30 am, and I still have to get Salamander to put on his shoes and get on his coat.


So, 8.32 am, out the door we go. I always unlock my car from the back door, so the boys can get themselves in the car, while I schlepp all the backpacks, lunch boxes, my own junk out the house. Potatey runs out the back door, to the car, wrenches open the car door and proceeds to hoist himself in the car. And sits there waiting for me to clip him in. Salamander goes out too, with 4 reminders from me to please walk straight to the car and get in the car, as we are running late for school (once again). I come outside about a minute later (gathering all those d##n bags takes a while), and where is Salamander?

Nooo, NOT in the car. On top of a huge snow pile in the back yard re-enacting the Battle of Travalgar (don't ask..). Now I realize that even almost 9 year old NT boys would have had a hard time resisting a pile of snow. But man, if my 4 year old can resist same pile and get himself in the car as he knows we are running late, then you'd think the almost 9 year old can do that too..

And with Salamander, if it's not a pile of snow, then it's a twig on the drive way, or a piece of string, or a mud puddle, or an acorn that needs to be kicked/smashed/mushed, or a toy truck that has to be moved to a different location AT THE OTHER FRIGGIN' END of the yard...

Four more pointed reminders from me to Salamander to get his rear end of that snow pile and into the car, and finally we're off (8.37 am it is now.. thank God we are only 2 minutes away from school; first bell rings at 8:40 am, and we make it by the skin of our teeth pretty much every day... And believe me, I've tried getting the circus started at 8.10 am.. same thing happens..Salamander lives in a different time zone than the rest of us...).

Let me make it very clear that I LOVE this kid with all my heart and that I will do anything, ANYTHING to help him get better, and find his place in life.. I just hope, for his sake (and mine.. LOL), that the return of 'variable attention' is a temporary thing..and that, eventually, he will learn to understand that when it is time to get ready, it is time to get ready!!!!

Riding the rollercoaster.. once again....

Below are excerpts of an e-mail I sent to several close friends on the evening of March 17. As there is a continuation to this that I plan on posting here directly, I need to 'repeat' a few things...


Forgive me for getting a little maudlin.. it's the evening before Potatey turns 4 years old.. And it's been a crazy 4 years on the Mad Roller coaster.... starting in March of 2003 with Potatey's arrival 5 weeks before his estimated due date!!!!

Believe me, there are days that I wish the roller coaster ride I find myself on would just stop.. break down.. go kaput... whatever.... anything.. just so I can get OFF the d##n thing and walk, no RUN, away..

Never thinking THAT for more than a nano second of course... I am waaaay too pigheaded to ever give up on anything I start/do.. especially when it comes to my boyos...Combine that with momma bear instincts in overdrive, and the fact that I love my two young men more than I can ever put in words.... well, NOT dealing with what is tossed our way is not even an option...

The uphill battle DOES get to me though.....especially when I find myself, once again, in a stack-up of stuff that's..well... complicated...

I was doing reasonably well on Thursday late afternoon after I finally had wrapped up on the contracting project from HELL (although there is no rest for the weary.. next phase of same project is due April 30th, so I need to keep going full out.. Ugh... ). Called a few friends from the car on the ride home to vent about said project to 'get it out of my system', and felt pretty 'in control' of things (yes, yes... I can hear several of you start to laugh hysterically... feeling 'in control' of things?? Who was - I - kidding????)

Then from the moment I walk into the house on Thursday eve.. the Mad Roller coaster picks up speed again and we're in for another loopdeeloop...

I had to stay up until 3 am on Thursday morning (yup, you are reading the 3 am part right) to work through Salamander's school plan and his MCAS accommodations.. and realized that two key accommodations that were discussed at his team meeting weren't reflected in his IEP (and MCAS testing starts Monday.. yes, stupid mommy.. should have looked at THAT IEP a few months ago.. couldn't, as the contracting gig had gotten so crazy and I have been working pretty much round the clock)

As I am working on Salamander's IEP, I work through his latest 24 page thick neuropsychology report, and I realize that while I may be able to help him overcome a lot of the challenges associated with his autism, I may NOT be able to do quite as much about his learning disabilities. Which breaks my heart.. as he is one bright kiddo.. with a very unusual and complicated learning profile/style.. which his current school is barely able to accommodate to.. and I realize that in another one or two years, he is going to need a very different educational placement (more homework for me, to find him the right school ...)

I get test results in the mail for BOTH boyos that once again feed into my suspicion that this house is slowly poisoning them (yes, yes.. I need to get off my butt and get this house tested. And if results come back the way I suspect they'll come back, I gotta find a new place and MOVE.. as there is no way I'll be able to afford fixing the issues)

Potatey's digestive system came to a grinding halt again (yup, serious constipation), and overall is not improving nearly as much as it should have improved by now.. so I need to get him into a pediatric GI specialist for an endoscopy of his GI tract, from top to bottom.

I find out that Salamander has been 'white board eraser boy' for the past week in school and therefore has been exposed to dry erase markers, white board cleaning solutions etc .. an absolute NO NO for a kid that is as sensitive to chemicals as he is.. so no wonder he was a weepy, anxious, volatile mess for most of last week.. and no wonder he looked terrible again.. and no wonder we had so many letter reversals, trouble in remembering math facts again.. (he started doing better on Saturday night just before his bed time.. of course having been away from all of that stuff for more than 24 hours by then.. and me doing my usual 'let's mop up the toxins in his system' drill...)

I had to drive on Friday afternoon from my house to my client's in a snowstorm for a meeting, and didn't make it back home until 7 pm, got stuck in my own drive way as it hadn't been completely plowed yet, and found two very tired, very cranky monkeys anxiously waiting for me to get home.. (they calmed down quite quickly once I walked in)......

I felt terribly guilty being too tired to really go 'all out' on the birthday party I would have liked to give for Potatey. I KNOW he's not going to care that much.. as long as he gets his loot (which he will) and as long as there is chocolate cake (which I still have to make.. will do THAT tomorrow) and balloons to throw around (have to get THOSE tomorrow too).. he'll be happy (it's just that.. well.. the kiddo hasn't really had a proper birthday party in his entire life, due to all the insanity in this house. And I've been so insanely busy that I have not yet had a chance to plan anything for him and his little buddies from school.. on my to do list for Monday..)

And then just when I think this roller coaster is completely spinning out of control again, stuff happens that shows that.. eventually... the boyos and I WILL be OK....

I found my two young men, when I came home this afternoon from my little 'escape', working TOGETHER in shovelling out what snow still remained on my drive way. They had great fun pelting each other (and then me) with soggy snow clumps.. and they both looked sooo much better and acted so much better after a good romp in the snow.

Salamander came spontaneously up to Potatey after dinner and then sat next to him on the couch giving Potatey the biggest hug ever, whispering in Potatey's ear 'you are going to be a big boy now', and Potatey hugged Salamander back, and both of them just sat on the couch together for a good 5 minutes, arms tightly wrapped around each other, without screaming, screeching, hitting, biting, kicking or punching..

Salamander came up to me after Potatey had gone off to bed and told me that he is going to sing three songs for Potatey tomorrow, and then proceeded to sing said three songs for me, so I can hear what the songs are..(and several of you know how BIG this is.. Salamander refused to sing for the first 6 years of his life, and screamed at anybody else who did for the first 7 years of his life..)

So sure, once again we are doing a mad circle on the wacky carousel of life with kids with challenges..(and it continues to take me by surprise how we can go from spinning at a manageable 10 miles/hour to a nauseating 80 miles/hour in 30 seconds flat) but when it all comes down to it.. we will be OK.. we are OK..

I just loose sight of that sometimes..

Wednesday, March 14, 2007

Autism is a global problem...

As I was paying a visit to a dear friend's blog, I fell smack, bang into this posting. It left me reeling (and I don't reel easily these days), especially the comment about the average life expectancy of kids with autism in North Korea after diagnosis and institutionalization being less than 2 years.

Now what the H E double toothpick is wrong with all of us collectively as a society that we think this kind of crap (pun very much intended) is OK???
[to clarify, I DO exclude from the aforestated 'we', those of us that are actually treating our kids for their medical problems.. yes, those crazy biomed people who have the nerve to believe that autism is a complicated biochemistry disorder, as opposed to just 'different wiring']

Where is the outrage, the demand for research, the demand for international (and even national) aide to help these kids, where are the big benefit concerts?

Does anybody beyond the biomed autism community even care? I hope so, I really do hope so, because if not.. the future for our kids, spectrum and non-spectrum, will be bleak...
And while society at large continues to be asleep at the wheel, I will continue to link or post about stuff that could be the wake-up call.