Sunday, April 29, 2007

Autism Awareness Rally at the MA State House

Well, did manage to hit my third rare occassion yesterday.. I DID end up going to my bed early.. only problem was that I still DID NOT fall asleep any earlier than I typically do. Bummer!!!
Today was definitely still a very bumpy ride with Salamander, so yes, we are still on a 'down slope' of the rollercoaster.. But as I kept things very low key and avoided stressors (both situations and PEOPLE!!) as much as possible, we got through the day in one piece. We'll see what tomorrow brings..

By the way, April is Autism Awareness Month and tomorrow there will be a rally at the MA State House in Boston. I had really wanted to go, but once again, I managed to end up with a work related deadline on the day of the rally (don't ask.. I am CURSED when it comes to planning for stuff that -I- really want to do..). So I'll have to participate in spirit (or 'haunt in spirit'?? LOL..)

As I was rooting through my 'writings file' today (ok, ok, fine.. rantings file.. happy now?), I found the following testimonial back that I wrote in November of 2005 in support of MA State legislature to ban thimerosal in vaccines and to minimize mercury exposure from other sources . Thank goodness Salamander has continued to progress very well, but everything else I wrote is still dead one.

So in honor of the Autism Awareness Rally, here goes:

December 14, 2005

Good morning/afternoon. My name is [removed], and I am raising two young boys in Norwood, MA. My older son, whom I’ll refer to as Salamander, was diagnosed with an autism spectrum disorder, specifically Asperger’s Syndrome, and Non Verbal Learning Disorder, anxiety tendencies, attention difficulties and severe sensory dysregulation just two months shy of his sixth birthday. These neurobiological difficulties affect every aspect of Salamander’s functioning; they affect him socially, emotionally, behaviorally, physically and psychologically. They affect him at home, at school and in the community.

I love my son very, very much, and I hold his various quirks and special interests very dear. However, his day-to-day struggles in areas that seem to come so easy and naturally to his peers almost break my heart. I see other kids his age participate in sports, have play dates, go to birthday parties, go to parades, go see the fireworks, all that normal childhood stuff that every kid should be able to do. No, let me rephrase that, normal childhood stuff that every kid has the RIGHT to do. Participating in this normal childhood stuff, however, is almost impossible for my child.

My heart breaks and shatters in a million pieces, when I look back at Salamander’s developmental history and realize that until the age of 2.5 years, while frequently very, very ill, Salamander did develop normally, that is, like a neurotypical child. A very, smart neurotypical child whose daycare teachers more than once commented to me that he was ahead of his peers in many areas of development.

Then something happened. I will never know for sure exactly what happened, but my smart, social, fun loving boy started to change. He became moody, angry, developed great difficulties interacting with other kids, became aggressive for no apparent reason. Over the years, as these difficulties became more and more pronounced, Salamander was almost expelled from a Kindergarten program, as his behaviors, moodiness, lack of social skills and unpredictable reactions made it impossible for him to be with other children without constant incidents. I vividly remember one particular bad 3-week period where I would get calls 5 times or more a day from his daycare to let me know that Salamander had attacked yet another child.

I discussed all of Salamander’s difficulties, and the fact that no matter what parenting technique I used, nothing seemed to work with Salamander with many specialists, including his pediatrician, schoolteachers and counselors, and a psychiatrist. All agreed that something was off, but nobody seemed to be able to explain though what was happening to my little boy. Finally, after the summer from hell where Salamander became increasingly violent with his little baby brother, I had him evaluated by a neuropsychologist. I mentioned the outcomes of that evaluation earlier, and our lives were forever changed.

Salamander is now almost 8 years old [in November 2005 that is]. Thanks to many, many interventions he is making good progress. The majority of his behavioral issues, especially the aggression for no apparent reason, are under some measure of control most of the time. Socially he is making nice strides too. He is, however, struggling tremendously in school, something I would never have expected based on his early childhood development and based upon his academic potential as assessed by standardized testing. His neurobiological challenges make school such an overwhelming environment for him, that, at this point, it is impossible for him to achieve his full potential.

I remain hopeful for the future, as his mother I have to believe that everything will turn out OK. But, honestly, I am frequently overwhelmed with all the support, therapy, and just simple day-to-day care that Salamander requires. And will require for a very long time to come. In addition, Salamander’s challenges have taken an undeniable toll on his little brother, on my marriage, on our family’s financial situation, on our social relationships, and on MY own health. These are prices I wholeheartedly pay, as I love my Salamander so very much, and I want for him to have the very best shot possible at a happy and productive life. Still, I never, ever expected, when Salamander was a little toddler, that just getting through the day would become such a struggle.

[removed some paragraphs that are not relevant in the context of tomorrow's Autism Awareness Rally]

Autism Spectrum Disorders are currently being diagnosed in 1 out of every 150 children. Please, let’s do what we can to make sure that this number does not keep increasing, let’s do whatever we can to seriously investigate and then address any potential factors that could contribute to this very scary rate, even if a clear association has not yet been proven out. I wish for nothing more than to be able to prevent other children from having to go through what my son is going through every single day.

If your children are happy, healthy and thriving, count your blessings and please do whatever is in your power to keep them that way.

If your children are affected, then please, do whatever is in your power to get them to a happy, healthy and thriving place. The road to get there is far from easy, but our children are ENTITLED to get there!!


(and now off to do some more cooking for next week's lunches).

Saturday, April 28, 2007

Sweet Potatey...

It's been an up and down week. Last nite by the time both monkeys were in bed and asleep, I was dead on my feet. But as usual, waaaay too wired to be able to get to sleep before my customary 2.30 am time. I was (and still am) worried about Salamander, and of course Potatey had picked up on my general emotional state.. and turned into quite a handful (he is only 4 after all.. ), which didn't exactly add in a positive way to said emotional state...

Today was different though.. not that Salamander was in any better shape, we definitely had another bumpy ride. However, -I- was in a better place emotionally, and that certainly had its positive effects on Potatey...

I had two rare opportunities today... I had to be on site at my client's for a while this afternoon to get prepped for a big deadline next week. The place was dead quiet (only one other "nutcase" had decided to come in for a while.. and I say this with the greatest affection for the "nutcase" involved..), so I ended up spending 3 hours ALONE with just my thoughts, my favorite music playing at full blast, while doing what needed doing....

Second rare opportunity occurred after the dinner crunch... I ended up spending almost 1.5 hours with just Potatey!! Sadly I hardly ever get to spend time with just him, as, especially when not feeling well, I cannot leave Salamander out of my sight...
Potatey wanted to take a bath before bed, and as Salamander was utterly engrossed in his movie, it ended up being just me and Potatey in the bathroom. Potatey happily splashed around in the tub while I sorted Mt. Vesuvius of Laundry. We chatted about Ninja Turtles, Lepricauns and Spider Man, Potatey showed me his shark and whale imitations, and before I knew it, it was 7 pm and time for Potatey to get ready for bed. It was the nicest, calmest, most relaxed bedtime I've had with him in quite a while (and Potatey nodded right off as opposed to the usual 'will you finally settle down and go to sleep' circus). I even sat next to Potatey's bed for about 10 minutes and just watched my sweet little man sleep....

Salamander ended up much calmer and in a much better space at bedtime too... In fact, it's only 8.20 pm and already "All is Quiet on the Upstairs Front"..

So dare I dream that the rollercoaster has bottomed out again and that we are 'on the way up'? Too early to tell.. and truth be told, we probably have further down to go (if past experience is any I've learned to read Salamander so well over the years that my mommy gut tells me that we are not 'out of the woods' yet...).

But right now, THAT is not bothering me too much. Tomorrow I deal with what happens tomorrow. For now, despite this having been an anything BUT easy day, I AM at peace (and actually sleepy.. unheard off for me at this time of the day..).

Maybe I should go for a third rare opportunity and actually get to bed at a decent hour?????

Nah....THAT would be pushing it way too much..


Wednesday, April 25, 2007


As they say 'what goes UP must come DOWN'..

So we had a good ride out here for a while, with Salamander's art exhibit being a definite high point (the piece has come home and yes, I did manage to take better pictures.. and then the batteries in my camera died so I haven't been able to download the pics yet..).

Then as of last Thursday, we got on the 'down slope' of the rollercoaster ride again...Anxieties have returned, mood swings have returned, angry outbursts have returned. I AM piecing the parts together as to the why... that is going to take however a lot of my energy and time.. so I'll be off the blog for a bit longer...

Two interesting pieces I am going to toss 'out there'.... Salamander is currently excreting large volumes of arsenic and cadmium.. And I saw a spike in mood swing, anxiety, angry outbursts last year around this time too.... are there environmental allergies into play here (Salamander's environmental allergy related IgE's are normal.. but THAT, as I've learned the hard way, doesn't mean anything..).

I'LL BE BACK (to quote The Governator.... LOL)

Wednesday, April 11, 2007

My awesome, amazing, incredible Salamander!!!!

I am so proud of Salamander!!!! He is one absolutely amazing, awesome kiddo...
On March 30, I received a note from Salamander's art teacher informing me that one of Salamander's pieces had been selected for inclusion in the Annual K-12 Public School art festival. Now Salamander and Arts and Crafts did not combine for a long, long time. It has really only been since the last 10 months or so that he has discovered the enjoyment of drawing, coloring, and just in general 'mucking around' with paint, glue, beads, and other craft supplies.. A lot of his resistance to arts and crafts had to with his very poor fine motor skills (which have improved in leaps and bounds), his visual-motor deficits (improving too, slow but steady) and his visual processing issues (his brain literally hits 'overload' when exposed to colorful displays).

Here's the letter I got (I added Salamander's most recent school pic myself.. isn't he beautiful???)

Salamander kinda downplayed it all when I asked him about this. He told me: "Well, I made this pin [as in jewelry] and my art teacher really liked it." And that was all the detail I could get out of him.

Then the kick-off of the Art Festival was this past Monday. I hustled the boyos through dinner (as Potatey wanted to come too.. Potatey worships the ground his big brother is walking on, and the two of them have gotten so close over the past 2 weeks or so.. Salamander now actually wants to be with Potatey, is enjoying the big brother role, and Potatey is just lapping it all up), and then off we went.

The place itself was crowded, dark, smelly and LOUD. But Salamander was ready for the challenge. He took me and his little bro into the exhibit area, maneuvered through the crowd, patiently waited for me to find out where his art work was exhibited (and while I was asking around where we needed to go, Salamander tried to calm Potatey down, who was flipping out as all HE saw were knees, knees and more knees.. yup, that's how crowded it was), and then got so excited when we found his exhibit. I was blown away by what he had created, a photo is attached (which doesn't do it justice.. it is displayed on a deep red velvet background.. which work great for the exhibit itself, but not so good with my camera.. I will make better pics once the piece is sent home).

I was also blown away by how Salamander interacted with teachers, class mates, school mates, neighbors etc that he met at the Art Festival. He greeted everybody appropriately, then took interested parties to his exhibit area and was able to explain all about how he made this piece and what it all meant (sorry.. can't provide too many details there.. as I said, the place was loud and Potatey was in full meltdown mode by that time.. ). He really enjoyed 'being in the spot light', and more importantly, as some of the visitors to his exhibit had pieces of their own at the Festival, was able to reciprocate and visit his visitors' exhibits in return. It was just absolutely awesome to see him be 'out in the community' and be so accepted and so obviously LIKED by others.. (believe me, THAT hasn't always been that way.. not because he's not an absolutely awesome, lovable kiddo.. but because his, rather explosive and unpredictable, temperament can make social interactions, uhm, interesting.. LOL).

After about 25 minutes of being at the exhibit, Salamander was getting a bit restless and indicated that he needed to leave. And so we did...

As we were driving home, I observed Salamander from my rearview mirror. The happiness in his face, the pride radiating from his body language.. AWESOME, AWESOME, AWESOME!!!!

And then he asks me if we can go to an Art and Craft shop this weekend to get supplies as he wants to make 'more jewelry'. You betcha we will!!!!!

Saturday, April 07, 2007


Salamander says to me tonite: "I am delighted to be the son of a smart, intelligent and talented mom."


(which totally made up for Potatey screaming at me: "I hate you", after I broke one of the unbreakable "Laws of Potatey".. Potatey is quite a trip these days...)

Men !!!!!

It's turning into one of those days that I am ready to give up on the male species in its entirety... (OK, I'll be honest.. except for my boyos and maybe two or three exceptions within the adult subspecies..)

A very dear friend just sent these to me (finding herself in the same frame of mind I am sure) and these are too good not to share...

It is good to be a woman:
1. We got off the Titanic first.
2. We can scare male bosses with the mysterious gynecological disorder excuses.
3. Taxis stop for us.
4. We don't look like a frog in a blender when dancing.
5. No fashion faux pas we make, could ever rival the Speedo.
6. We don't have to pass gas to amuse ourselves.
7. If we forget to shave, no one has to know.
8. We can congratulate our teammate without ever touching her rear end.
9. We never have to reach down every so often to make sure our privates are still there.
10. We have the ability to dress ourselves.
11. We can talk to the opposite sex without having to picture them naked.
12. If we marry someone 20 years younger, we are aware that we will look like an idiot.
13. We will never regret piercing our ears.
14. There are times when chocolate really can solve all your problems.
15. We can make comments about how silly men are in their presence because they aren't listening anyway

Tuesday, April 03, 2007

Just HAD to share this one..

What do you all think? Would this picture qualify to document Salamander's "significant improvement"? (in response to a request that Stan Kurtz put out on various biomed listserves.. he is working on a video tribute to Dr. Rimland and has asked for pictures of recovered or significantly improved kiddos).

Not that long ago, just the thought of Potatey touching him would have sent Salamander into "flight or fight"....

Got Salamander's most recent Urine Amino Acid test report back today.. the improvements are nothing but spectacular. For the first time in 3 years all essential amino acids are WITHIN RANGE!! And he is not taking any amino acid supplements (beyond a very good multivitamin that has trace levels of only a few of the essentials..).. this improvement is the direct result of very targeted supplementation of his metabolic pathways, so his body can actually USE the foods he's taking in. I am in the process of figuring out how to get some of Salamander's test reports added to the blog..

Sunday, April 01, 2007

More pics..

These I took a little over a week ago, on a morning that it was suspiciously quiet in the living room..... I found both boyos TOGETHER in one chair, with Salamander teaching Potatey about dinosaurs. And Salamander was actually listening to Potatey's questions and answering them appropriately, as opposed to just monologuing away.

Now I KNOW the above is the result of what you see below. Yes, having to work our way through all of this stuff every single day is a HUGE pain in the patootey, but so worth it!!!

Salamander is starting to really 'take off' in all those areas that are considered core deficits for Spectrum kiddos. Sure, the education and remediation piece is a very important component in helping Salamander acquire those skills, but what you see above is the reason WHY the education and remediation therapies are finally sticking!!!