Thursday, May 8, 2008

Little God Lead Poison and the blood tests

Our first inclination that something was amiss with Sharky was when he was two years old. I got out of work and got a voice mail from Lillie in tears, saying she had gotten back results of a test that showed astronomically high levels of lead, mercury, and other heavy metals.

The test had been done by a man, whose name I forget, who was both a practitioner of natural medicine and a licensed Physician's Assistant (PA). He had his own practice in Tumwater, a small town just south of Olympia. He performed a test in which he took a small snip of Sharky's hair and analyzed it. Everything that should be low was high and everything that should be high was low. Everything that should be in the middle was not, and nothing was in the middle. It was a graph of utmost extremes.

We were alarmed and yet totally unsure what to make of all this. What did all these graphs mean? Was this legit? Who the hell was this guy, and why did he treat us like subhuman scum?

A bit later, our naturopathic physician, who was beloved by us and trusted completely, told us that while this man lacked bedside manner he did, in fact, know his (kaka).

We took Sharky to a clinic to have blood drawn.

Let me please pause dramatically at this point.

Then let me repeat:

We took Sharky to a clinic to have blood drawn.

The boy put up a struggle unlike anything any of us, including the blood drawer, had ever seen. Three people restraining, one person (me) talking to him to keep him calm. Another person (Lillie) both restraining and whispering sweet nothings.

Years earlier, I had taken my beloved cat Artemis to the vet to be treated for ear mites. As the vet swabbed medicines into the ear of the cat, Artemis let out soul shattering shrieks that seemed to take on new levels of depravity with each passing moment. She discovered new depths of despair with each swab, until she seemed to be channeling some eternal feline sorrow that existed in a dormant state for all time and space, but was only occasionally tapped into.

As I was taking Artemis away, I looked at the vet and was impressed by the fact that she had a slight glisten of a tear in the corner of her eye and a modest tremble in her hands. My kitty had gotten to her!

The rage of Artemis was a Saturday morning cartoon compared to what the Shark unleashed upon the universe that day.

Gutteral screams. Thrashing. Banshee-like howling.

And this was just over being made to lie down. The needle hadn't even come out yet.

I never saw the women who helped strap him down and extract a teaspoon of blood from his arm again. But I have to imagine they have since moved on to other occupations. Perhaps veterinary medicine.

And the end result was that Sharky scored a 2 on the blood lead level scale, which is well below the alarm rate. But this does not diminish the significance of his out-of-whack readings from the rude PA guy in Tumwater. It's been covered that kids with autism have toxicity issues.

Later, Sharky and Lillie both did a program through our Naturopath that involved lots of green stuff and collecting pee in large jars in the fridge. This pee was then sent to a lab, which found that both of them were excreting lots of nasty stuff, the same type of stuff the PA from Tumwater said he found in Sharky's hair.

I couldn't wrap my mind around all the specifics at all. So I did what I know how to do. I wrote a poem.

Years later, Sharky was included in a photographic essay by Woodinville-based photographer Charles Cotugno called Stories of Autism. Charles asked the parents of the children to include a short essay on how they felt about their child's autism or how the autism had affected their lives. Even though our "understanding" of Sharky's state of being had changed quite a bit since the days of jar pee, I still felt as though the poem did a better job of expressing my feelings than any paragraph I could conjure up for the photo on its own. Charles ran the poem as is.

Here 'tis

little god lead poison

little boy born
to a poisoned greeting
throws the universe miles
takes seven steps back
proclaims himself master of heaven and earth

flaps his arms, takes flight
yet stays locked
in his own condition beyond our recognition
in a world of his own
as protection

is for wonderful humanhood

reminiscing on his view of the earth,
has given us real hope for the future

don't start hurting feelings
of little god lead poison
build us a tower
to little god lead poison
to this small, forlorn, beautiful creature

and no one will resist falling in love with him

and everyone will want to protect him.


Club 166 said...

I know you were trying your best to help Sharky with the info you had at the time, but I have to say that it really hurts to read that poem.

It would seem that no other field is full of as much information and as many charlatans trying to make money as autism is right now.

I would suggest reading this article by Dr. Steven Novella, as well as following Christina Chew's blog and the Autism Hub for awhile before attempting other questionable interventions that might be not just painful, but outright harmful.



ted said...

Thanks for the links to the articles Joe. To clarify a few things, at the time neither we nor any of the involved practitioners had any inkling of Autism, so the treatment Sharky received solely addressed the immediate concern over possible lead exposure, and was not an effort to remedy Autism.

Also, the treatment he received was an extremely mild blend of very gentle antioxidants that were roughly comparable in effects to drinking a cup of Odwalla Superfood juice. I think you'd be pleased to know that the PA, the ND, and the people we spoke to from local agencies providing information on lead poisoning all strongly advocated against the idea of full blown chelation treatments.


Anonymous said...

Generally speaking, reading about autism doesn't really affect me anymore. I have become numb to it. I have read so much it is textbook now. But I wanted to thank you for your blog because it did make me feel very strongly. I am grateful for that.

We received my sons autism diagnosis on the very day we found out we were pregnant with my third son. My youngest was born a month after your son. All three have since been diagnosed.

Our days are filled with running from one therapy to the next. It's a hectic life and there is little time to sit and think about it. Feelings are pushed aside for the day to day survival. If we are all alive at the end of it, it's a good day.

It may sound like complaining, but as we are all still alive, they have all been good days, right? We no longer know what "typical" is. We know no other way to live our lives. Everything before the era of "diagnosis" is a blur.

We are grateful for the amazing community that we have been led to. For the hearts that have gone out to ours. We have seen people who preyed upon parents that would do or give anything to help their children, and we have seen school districts that lied and cheated us. But for the most part, our path has been very blessed.

Our children are very difficult to make contact with at times. However, when you do, when you get inside of that world of theirs, it's an amazing experience to behold. And really a connection like no other "typical" relationship can offer.

I know you have received many links but I wanted to share one with you as well. This is a “brain scientist” that is relaying her study of her own brain as she goes through the process of a stroke. You may not think it relates to autism but it is an amazing 18 minute venture into understanding sensory issues that come with brain malformations. It also touches on the amazing venture of actually living just in your right (as opposed to left) mind. I also felt this was a fantastic description of how our children must live. And it is beautiful.

Thank you again for your blog. In sincerely touched me. I also wanted to compliment your writing style. My husband writes (as a hobby)and has edited professionally before. He is very critical, of poetry especially. But he did enjoy yours (:::feel honored:::).
Yours truly,

Anonymous said...

Oh, and the link I mentioned is. . .

ted said...

Carly, thanks for your kind words. And don't worry, I don't think anyone in their right mind would accuse you of "complaining." In fact, it sounds to me like exactly the opposite of complaining! Best to you and your family.


Sheri said...

I read about your little boy on Strollerderby. He's so cute. Our oldest son is 18 and is on the spectrum. Our middle son is almost 6 and has been diagnosed with aspergers. Quinn is 4 and we aren't sure yet what is up with him. (no official diagnosis so far)
We are lucky to have these children born when there is so much going on to find out what makes them tick. God bless and good luck to you. I'm going to continue reading and following your little guy's journey. I don't know if this will make you feel any better (probably not, but at least someone else in this world has been where you are) Matt was deathly afraid of doctors too. He went to my office one day when I was off work and thought it looked like a doctor's office. Needless to say, he lost it. And his booster shot experience sounded an awful lot like Shark's blood draw. Things will get easier. Matt graduates this year--prom is next week.