3:00 am

I wake in the dark and turn to the clock, mainly out of force of habit because I already know what it will say ... 3am or somewhere there abouts. 3am and I'm awake. AGAIN. This has been happening for quite some time now and just about every night. Not kidding.

The earliest I remember this happening was shortly after Sam was born and I was breastfeeding. Naturally he ate every hour and a half, strait thru the nite, and one of those feedings always seemed to fall at the 3am hour. Even when I got him down to one feeding per night, it would be at 3am. Weened him to bottles after 6 months, still he would have 3am bottle. Its like there was a tiny little alarm clock in his tiny little handsome body. 3am = feed me! Then I broke him of the bottle, but he never did sleep thru the night. He would still wake up at 3am, and I would hear him over the baby monitor, playing his aquarium music or talking to his animals. And we would both be awake, me listening to him until he fell alseep, and hoping I would follow suit.

At about the time I should have been putting the monitor away, we moved to NC, and now he was in a strange room quite a ways away from me, so I kept it in his room just til he "got used to things". And so we continued this bizarre insomnial tradition. Next thing you know I was pregnant with #4 and not sleeping for different reasons...cuz really, who can sleep when you have a baby the size of Sophie renting out space in your uterus (she was 10lbs 14oz when born). Then I went thru similar with her, multiple feedings thru the night, although she was not as regimented as Sam was. The monitor was moved to her room, but Sam was in the room above mine and I could still hear him thru the floor, awake at 3am, playing, talking, or moving around his room.

It was about this time that Sam was diagnosed with Autism and I discovered that a large number of autistic children often have sleeping issues. They don't seem to need the amount of sleep that other children do, and some just can't seem to turn off their active brains. So Sam would wake at 3am, occupy himself for a while, and usually be back to sleep by 4 or 4:30am at the latest. I was not always so lucky. Unfortunately for me, once I'm up, I can rarely go back to sleep.

And so it has been for over 5 years now. I wake up. I see its 3am and I lay there. I listen to Jim breathe (read: snore), I'll listen for Sam (he is having less of these nights now that he has started supplements that seem to help him regulate his sleep), or my mind will wander to the stresses of the day...bills, business, kids, marriage. Sometimes my thoughts drift to things, or people, I don't want to think about but I cannot avoid.

I've tried writing things down so that maybe my mind will let go and let me drift back to la-la land. But 9 out of 10 times it doesn't help. I could, and often thought of going out to the office computer and blogging or Facebooking or tweeting, but I'd hate to wake up Jim and ruin his night too. So I lie there...thinking. Trying to will my head to stop, to slow, to go to sleep. Inevitable I see 5am on the clockface before I fall asleep, only to have Jim wake by 5:30 and the kids by 6:30. Then its time to start my day.

Its a wonder my head doesn't just collapse onto my dinner plate every evening, but I imagine, after all this time, I am just used to it. I have to admit though, I am usually in bed by 10pm because I can't keep my eyes open without the aid of toothpicks.

So here we are, 3am and I...frenemies. A constant companion but one I could do without.

Love's Secret

Never seek to tell thy love,
Love that never told can be;
For the gentle wind doth move
Silently, invisibly.

I told my love, I told my love,
I told him all my heart,
Trembling, cold, in ghastly fears.
Ah! he did depart!

Soon after he was gone from me,
A traveller came by,
Silently, invisibly:
She took him with a sigh


(William Blake)

Changes

Life can change in an instant. I’ve been reminded of that several times this year. Its one of those things you apparently have to learn over and over again throughout your life. Friends, family, and loves dance in and out of your life and with each entrance and exit (usually I notice more upon the exits) you realize how your life is changed yet again.

Its been a rough year. I have lost old friends and gained new friends. There have been deaths and divorces, separations and reunions. I had a friendship that I thought was over return to me even closer than before; but on the other end of the spectrum have had what was a dear friendship, a lifelong love, leave and return but obviously scarred and tainted. It will never be what it was before.

Some people can take the loss and seemingly move on without looking back. Full steam ahead. I tend to dwell, to ponder, usually to over think! Then I put it down. Here.

10 Things About Autism and Me

Lisa Jo Rudy who has a blog about autism at about.com and is a facebooker herself, took a page from the rash of "25 things about me" posts to start this "10 things" list for people in the autism community. Figured I'd give it a go as I really liked her list. So here goes. Feel free to join in if you are touched by autism in any way....parent, caregiver, teacher, aide...whatever!

1. I still remember the first time I ever heard about autism...I was only a tween, somewhere between 10 and 12, and it was the late 70s early 80s when Autism was still a very rare disorder. I saw a television movie (don't ask me what it was called) about a famiy's struggle with trying to reached their severely affected son. I don't remember many details, but I remember thinking how horrible it must be, and never forgot it.

2. I remember when the first connections between autism and vaccines (the MMR in particular) were being made in the press. I saw a article in a parenting magazine right before I had to vaccinate my first born and had asked my pediatrician about it. He had assured me it was all mularkey and just a coincidence in timing. There was nothing to worry about.

3. Like most people, up until my son started showing symptoms, my only experience with autism was the movie "Rainman"

4. Looking back, I think I knew something was "not right" as early as Sam's first bday. Because he was born prematurely, there was a lot of "don't worry he'll catch up" "you're over-reacting" "give him a chance" thrown around. All I can say now is...MOMS trust your instincts!!! You know your babies better than anyone else out there. Medical degrees or not!

5. Before my son was even born my sister started working in special ed classes in Uxbridge and became an ABA Technician working specifically with kids with Autism. I truly believe that the movie, article, and her HUGE career change (from banking into special ed!) was the "Big Guys" way of preparing me for what was to come.

6. I hate how the different factions in the Autism Community .... those who believe vaccines play a role, those who feel its all genetics, those who push for "Nuero Diversity" and don't believe it should be treated/cured ... just tear each other apart in an effort to: be heard? be right? receive the most funding for study? Not sure why, but its horrible.

7. I can follow my son's descent into Autism and watch how it followed various vaccines and other insults to his system. I truly believe it will be within my lifetime when the FDA and CDC will finally have to admit that vaccines do play a major role in the development of Autism.

8. I am not "Anti-Vaccine" . I do think we are OVER vaccinating our children. I think we need to re-think the "one size fits all" vaccine schedules. My premee should never have received the same amount and schedule of shots that my 11 pounder did....that just doesn't make sense. We don't even administer Tylenol like that!

9. I don't think that "convenience" vaccines like the Chicken Pox vaccine, flu vaccine, and others like them should EVER be MANDATORY. Cuz I'll tell you what...I'd rather my son have the chicken Pox for a week, than Autism for the rest of his life.

10. Finally, I think its just comletely irresponsible for the CDC, FDA, and AAP to just deny the connection between vaccines and autism thru their flawed studies and ridicule of the 1000s of doctors and parents who KNOW there's a connection. It is irresponsible and arrogant to think any medical intervention is SAFE for EVERYONE. Not everyone can take penicillen. Not everyone can take Codein. Not everyone can eat shellfish. Not everyone can tolerate vaccinations. In March of 2008, Julie Gerberding - the head of the CDC at that time - admitted openly on GMA that vaccines DO cause autism in a small subset of children. 3% I believe is the fiigure she threw out. So what does that make my son....collateral damage? His life and future are to be sacrificed for the better good of the 97% not affected? What a noble thought. But not when your son is part of that subset.

So I guess its a good thing that Ms. Rudy kept it to "10 things" cuz I could keep going! ;)

I am truly blessed to have been given this little man. He's such a joy...so sweet, gentle, and has an amazing intellect. I don't think I'm necessarily searching for a cure, but I am looking for anything and everything that will give him all the opportunities any other child has. Isn't that what all parents do?

And there's plenty of good that goes along with Autism too. You learn to appreciate the little things in life sooo much more. Every milestone is a triumph. You have to break things down into small components and take baby steps one at a time so life tends to slow down a bit....which is always a good thing. And seeing the world from another vantage point can never be a bad thing. Your eyes and heart become more open to just about everything, you definately become more patient, tolerant. Sam teaches us a lot. And with Sam, there's always lots of fun and laughter.

A Big Thank You!

Another big "Thank You" goes out to the Washington County EMS. They had me in for their staff meeting tonite to give a presentation on First Responders and Autism. I showed a video entitled Autism and Law Enforcement by Dennis Debauddt (http://www.autismriskmanagement.com/) which detailed some instances in which they might encounter a person with autism, how to respond in ways that might diffuse a situation, and what signs to look for that might give them the idea that they are dealing with an autistic person and not just someone on drugs, someone being uncooperative, etc. I also talked a bit about my experience with autism and my son Sam. Ended with some Q&A.

Also got a lead on another presentation. It was fun. They made me welcome, and I even got applause. I am truly blessed for one, being able to provide info that might help both first reponders and the autistic people in our community, and 2, that I have such caring and compassionate people in our little county.

Again, a big "thanks" to the EMS for having me out there!

Autism Awareness Month Begins

I think we need a small grassroots movement to change "Autism Awareness Month" to something more pro-active. I mean, I think most people are pretty much aware that autism exists and that its at epidemic proportions...so how about "Autism Action Month" or something to that effect. I'll have to put the copywriter in me to work and think of some more alternatives.

Regardless, April is Autism Awareness Month, and today (April 2nd) is World Autism Day...so do something. Donate to the cause, read up, sponsor an event, babysit or just hug/love someone with autism today (or their family). Support someone with autism that you love. It'll be greatly appreciated.

Results

OK, we got good news and bad news yesterday from the results of some of Sam's labs (he hasn't done the pee-pee tests for me yet!). I'll start with the bad, so as not to scare myself again. And its always good to end on a good note.

Sam is definitely suffering from Heavy Metal toxicity (or pophyrin toxicity as they call it). Surprisingly his levels of lead, aluminum, and mercury were in the normal range (good news) however his levels of Antimony, Bismuth, Cadmium were elevated and his level of Arsenic was 5 times what it should be. I asked her why the heck his arsenic levels would be so high and she said fish. But Sam doesn't eat fish. So that's not the answer. The overall answer I got was that these things are all around us everyday, and while the rest of us have bodies that can clean them out, they are finding most kids with ASD (autism) cannot. They "hold on" to these metals for some reason, and that's why they are effected negatively by vaccines where others are not.

I put out a call to other ASD parents trying to find out where the arsenic can be coming from and got loads of information back....So far I've heard "Flame retardant clothes" (all kids jammies must be flame retardant), incinerators and smelters, and air pollution. Another friend told me how Pressure Treated Wood and wood chips are full of arsenic...it is used in the curing process. And another sent me articles about how it (arsenic) is used as a pesticide on cotton plants. Crop dusters are spraying it into the air, and when the cotton trash is burned it gets into the air. Obviously rain will also wash the arsenic into the ground water. Arsenic is also used in the feed given to chickens, Turkeys, and swine. (to kill off parasites in their stomach and "pinken" up the meat!) the arsenic is then passed onto us thru their waste, burning of their waste, run off from their waste, and also in the meat itself. Yummmy!!!!

By the way, here in Nnortheastern North Carolina, I am surrounded by Cotton farms, chicken farms, and pig farms. So this is a pretty good indicator of why his arsenic levels are so high.

Now his levels of Selenium (a nutrient and mineral...not a heavy metal) were also off the charts. Selenium is present when your body is trying to dispel Mercury, so that could very well be a sign that his body has been fighting off toxic mercury and that's why his level was normal. (good news)

He has several "gut" problems. An overproduction of yeast, which causes dysbiosis. An underproduction of good bacteria, probably because the yeast killed it off, improper absorption of nutrients and minerals, and protein...also most likely due to the yeast. So he had very very low levels of all vitamins and minerals (except selenium) but especially Vitamin D, Calcium, Iron, and Magnesium. yes, Iron...he's also anemic.

We already know he has some serotonin defects from the last time we were there. That's what causes the anxiety, panic attacks, and sleep defects.

But the scariest thing she mentioned was they found in his blood work something called Creatine Kinase (CK). Its an enzyme that's usually not present in most people blood unless there is some kind of problem. She looks at it because she also deals with kids with MS and MD. There are three types of this enzyme depending on where it comes from...the brain, heart, or muscles. Kids with CK from the muscles in their blood, show muscle damage, and are diagnosed with MD. People who've had heart attacks, strokes, myocardial infarctions, will have the heart type in their blood showing damage to their heart. NOW no one knows this for sure, and this is what her research is about, but she thinks it only follows that if you find CKBB levels in someone's blood, the kind from the brain, that would indicate brain damage. Sam had 16% of CK-BB in his blood work. Scary she said, but we don't know what it means for sure. No one knows for sure. Because his mitochondrial information regarding the brain was fine. Showed no problems. Its something she's continuing to look into.

Now, arsenic, especially at high levels like Sam's can cause neuron degeneration, which to me would be brain damage and seems like that could account for whats going on. I have to ask her.

So good news. All his other markers, digestion, metabolic processes, absorption, and bacteria/parasite levels were normal. No genetic markers which means no Fragile-X syndrome, or mitochondrial disorders.

So the new plan is to get his gut issues straightened out first, as they are the easiest.

In addition to the 5HTP and GABA for his anxiety, he will now be taking:

Vitaspectrum - a very potent form of vitamins and minerals
Vitamin D3
Calcium, Magnesium, with Vitamin D supplement
FeSo4 drops
Cod Liver Oil (our grandmothers were right!)
Three-LAC (a probiotic to put the good bacteria into his system)
and a month long course of DiFlucan to kill off the yeast.

If you want more info on what the overproduction of yeast has to do with autism click here: www.talkaboutcuringautism.org/medical/yeast-overgrowth-candida.htm

Basically, she said we could very well see HUGE improvements once we clear his body of the yeast. He should be more focused, "With-it", less stimming, jumping, silly noises. His body will be brought back into balance and begin absorbing all these nutrients and vitamins we've added which his body needs desperately. and once brought back into balance it could start taking care of the heavy metals on its own. If it does not, we can then chose to chelate...use different minerals to help pull the metals from his body. But you can really only work on 2 or 3 things at a time. And its most important to get rid of the yeast and improve his levels of minerals right now.

So we have lots of work to do,. It is what it is...can't piss and moan about it. All we can do is fight it. Never give up. Never give in.