Wednesday, February 04, 2009

I Believe....

[my apologies in advance if what I am about to share offends anybody. No offense is intended, I am merely jotting down my thoughts. This week will be the 5th anniversary of Salamander's first official diagnoses (AS & NLD), the 5th anniversary of officially (as I suspected things were 'off' for much longer than that) 'having a horse in this race'. And truth be told, I suspect to be 'in the race' for at least another 5 years, if not 10. And THAT is making me think about where I was 5 years ago, and where I am now]

I continue to believe that Autism is a garbage diagnosis - assigned when medical professionals either can't or don't want to take the time to figure out what really ails the child.
I continue to believe that a lot of children with "autism" are physically very very ill.

I believe that Autism really should be "Autisms".

I don't believe that all Autism is genetic, nor do I believe that all Autism is environmentally induced.

I believe that Autism occurs when an underlying genetic vulnerability forms a very unholy alliance with environmental insults and immune system deficits.

I believe that Autism is much closer related to a metabolic or mitochondrial disorder/ dysfunction than is currently recognized or acknowledged (why hardly anybody in the traditional medical community recognizes the 'multiple organ system involvement' piece in so many kids with autism greatly vexes me.)

I don't believe that Asperger's is different than or from Autism. Autism is a spectrum disorder - with Kanner's on one end, and ADHD/LDs on the other end. Asperger's falls somewhere within that range (and even within Asperger's there is a range of 'affectedness')

I don't believe that all Autism is mercury poisoning (but that doesn't mean that some of the kids with Autism aren't mercury poisoned)

I don't believe that all Autism is caused by vaccines (but that doesn't mean that quite a few kids with Autism aren't vaccine injured).

I don't believe that all vaccines are 'evil' (but that doesn't mean that there isn't a sub population of kids that are more prone to Serious Adverse Events - including my two).

I do believe that some vaccines are plain old ridiculous (and dangerous) - Hep B, varicella, MMR, flu, HPV, just to name a few.

I continue to believe that ALL kids with autism can benefit tremendously from biomedical interventions.

I do believe that not all kids with autism will respond to the same extent to biomedical interventions, and I also believe that you need to commit to biomedical interventions heart, soul (and pocket book) for at least 2 years before you give up.

I don't believe that kids with autism can 'recover' from biomedical interventions alone.

I do believe that 'recovery' (although I prefer the term 'remission') from autism is possible, but I also believe that what that recovery entails depends very strongly on the definition used (I'm sorry.. but 'just' loosing the DSM-IV diagnosis does not recovery make)

I no longer believe that 'everything happens for a reason'. Sure, there are certainly situations where this does apply. But not when it comes to the suffering of our kids, the daily challenges that our kids fight to overcome. I get extremely irritated when I get 'well, everything happens for a reason' thrown into my face when it pertains to my kids. In that context, it's a tired, tiring, insulting, demeaning and invalidating cliche that ought to be banned from the English language.

I do believe that each and every parent of a child with challenges has the child's best interests at heart and knows their child best.

I no longer believe in the 'parent partnership' or 'parent team'. Sure there are a lucky few of you out there where the male parent is 150% committed to helping the child be the best they can be. But in the majority of cases, it all rests on mom's shoulders (with 'daddy' off pouting somewhere as his life is not turning out the way he had planned).

I no longer believe that "Doctor knows best."

I believe that all moms have an inherent instinct about their kids. LISTEN TO IT AND FOLLOW IT.

And in the end, just like I was 5 years ago when I first tentatively sat down in a seat on this crazy, f#cked up, roller coaster from hell..

I am simply a mom who will fight to the death for her childrens' mental and physical health.

7 Comments:

At 1:39 AM, February 03, 2009 , Anonymous navywifeandmom said...

Amen to that, Petra! I feel the same way! You summed up PRETTY much everything that I feel having a dog in this fight.

I know what you mean about "everything happens for a reason". Another phrase I am sick unto death of (and I am a Christian) is "God never gives you more than you can handle". I cannot stand that phrase any more, and I was as guilty as the next person of saying it before this happened to me.

Did you happen to see that poor baby who died after his newborn Hep B shot over on Age of Autism? I was so upset about it after seeing those horrible pictures that I had to blog about it myself just to get it out of my system.

I wonder what those lowlifes over at the wackosphere who love to spend their free time gleefully bashing parents like ourselves and the doctors and scientists who actually give a crap enough to try and help our babies think when they see those pictures? Can they REALLY look in the eyes of that baby's parents and tell them that his death was worth it for "the greater good"? Makes me physically sick.

 
At 9:04 AM, February 03, 2009 , Blogger Petra said...

Ah.. you HAD to bring up my other most 'disliked' cliche "[..] never gives you more than you can handle." Sorry, but that's just bull. Like there's somebody 'sitting upstairs' parceling bad sh#t out and deciding who gets more than others? I totally lost it once when somebody said that to me in what had been a particular bad month and shot back 'Well, time for that guy upstairs to go sh!t on somebody else for a while. I'm all done cleaning up." Not nice, I know. And I also realize that people resort to regugitating these cliches because they really don't know WHAt to say, or because what you are saying is just making them too darn uncomfortable.

Say the post on the baby. Couldn't read it, just couldn't.

I suspect that a lot of the crazies in the wackosphere have some sort of personality disorder. They are so in love with their own ideas and the idea that they can create a ruckus, all so they can be in the spotlight. They don't give a rodent's behind about the kids.

 
At 9:19 AM, February 04, 2009 , Blogger Charlie said...

Amen sister, on all accounts!

 
At 9:20 AM, February 04, 2009 , Anonymous Jeanne said...

Geez, when am I going to learn to sign in differently so that my name doesn't come up as Charlie?

:-) Jeanne

 
At 9:42 AM, February 04, 2009 , Blogger Petra said...

Jeanne = Charlie.. I know who you are ;)

 
At 7:10 AM, February 05, 2009 , Anonymous silk said...

As if god wants people to suffer. I don't think that's actually in any scripture I've ever seen. He TOLD them NOT to eat the effing apple.

Interesting spin on the genetics/environment debate: I have three aspies. Hubby, ds1 and ds2. Hubby had no vaccines and is healthy. His AS is relatively mild. First son is fully vaccinated, and is sick as a dog. Biomedical interventions helped enormously, but he's still the canary in our house. I refused vaccinations for ds2, and he is very healthy. Mild aspie yes, but miserable, NO. Our plane landed in shitville.

 
At 9:23 AM, February 05, 2009 , Blogger Petra said...

Silk.. I completely here you..

"Asperger's" traits all over both sides of the family (one paternal cousin diagnosed w/ AS. Two more paternal cousins 'something going on'). Autoimmune disorders, mental health issues, 'funky' immune/gut illnesses all over both sides of the family too.

So for my boys (especially Salamander) = genetics + environment = big mess. It would have become a big mess for Potatey too, if not for the fact that the environmental factors for him were much much much stricter controlled.

 

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