Eli Stone

Here is an article I thought worth sharing regarding the topic of the upcoming new show called Eli Stone that debuts tomorrow night. I read about the episode where Stone sues a vaccine manufacturer for causing a boy's autism, but I did not really know what the show Eli Stone is really all about.

Here it is:

Eli Stone: Autism and the Redemptive Powers of Faith
By Julie Deardorff of the Chicago Tribune. tinyurl.com/2zben7 Eli_2

Unlike officials at the American Academy of Pediatrics (AAP) and many pro-vaccination bloggers, I've had a chance to watch the entire pilot episode of ABC's legal comedy/drama "Eli Stone." The already controversial program, which debuts Thursday at 9 p.m. and subjects viewers to fanciful scenes involving pop singer George Michael, depicts a lawyer who argues in court that a mercury-based preservative in a flu vaccine made a child autistic. The AAP, after watching a seven-minute trailer of the show and reading media reports, was so outraged a sacred cow had been attacked that it demanded that ABC cancel the episode. Ironically, the move is drawing even more attention to the show. While the program includes statements that science has refuted any link between autism and vaccines, the AAP complained that "the episode's conclusion delivers a contrary impression; the jury awards the mother $5.2 million, leaving audiences with the destructive idea that vaccines do cause autism." I disagree. For starters, the AAP ought to give television viewers a little more credit. Will we really believe Eli Stone is a prophet who hears songs by George Michael, of all people, every time he has a vision? Moreover, the autism in the story line is almost incidental given all the other loopy things that are packed into the pilot. It's not about whether vaccines cause autism. What the episode's conclusion really asks is: Which is the greater force in life: science or faith? If the AAP had watched the whole program (or scanned the Web site), it might have seen that Eli Stone's brother, the doctor who diagnoses Eli's brain aneurysm represents science. Stone's acupuncturist friend, Dr. Chen, embodies faith. And as Dr. Chen tells Eli, "Everything has two explanations: scientific and divine. We choose which one to believe." This is how the autism-vaccine debate is playing out. Parents who are concerned about the safety of vaccines have already made up their minds. It won't matter how many studies show there is no link between vaccines and autism. We all believe our own truths. Vaccines can be life-saving, but like any medical procedure, they carry risks, even if autism is not "officially" one of them. It's up to every individual to get educated on vaccine safety and to consider benefits versus risks. I applaud ABC for trying to keep the conversation going once the television has been turned off. Eli Stone’s premiere episode airs Thursday night abc.go.com/fallpreview/elistone/index and there is nothing like a controversy to spark high ratings.

Think I'll tune in!

Oh - and hop on over to The Age of Autism (http://www.ageofautism.com/) for email addresses and phone numbers of ABC officials to help keep this show on the air, and for some more information on the controversy it has stirred up so far in the AAP, et al.

Potty Talk

My boy acutally used the potty and flushed the toilet. In fact, he liked flushing so much, I heard the toilet flushing from time to time as I was doing other things in the house. This, from a kid who used to run when he heard the noise.

Progress? Me thinks, yes!

Coincidentally, I was just getting ready to have a meeting on Monday with some teachers and a behavioral specialist to ask that they please back me up on potty training Lib at school (IOW putting him in underwear instead of pull-ups).

That's Lib. Just when I think he is so delayed with a certain behavior, he does it.

In his world, everything is right on time. Someday, I will GET that.

Time Enough At Last

Remember this? In one of the best Twilight Zone episodes ever, Burgess Meredith plays a bank teller with a passion for books who cannot get enough time to read. He is down in the bank vault when a nuclear warhead hits and destroys everything. Long story short, he is alone with all of the books in the library scattered around him - time at last to read all he wants with no one to interfere - until he breaks his eyeglasses in true twilighty-zone irony.

Anyway, I remember this story every time I find a good new book to read. Reading is one of my tiny islands of pleasure; a mini-mental vacation. I rarely get the time to read, but now that the weather has turned cold and nasty, Liberty is back in school and I can sneak time in between working and household chores, I am once again back into my favorite pasttime.

I'm especially excited because Stephen King's new novel just hit the shelves called "Duma's Key," set in Florida, no less. I know, I know. Lots of people think that King is all blood, guts and aliens. He often includes that in his stories, and I was never a fan of his until I read his book, "On Writing," which are his thoughts on the craft with a brief memoir thrown in. I loved this book and I became fascinated by him and read, "The Stand," his 1200 page epic novel of what happens to our culture after a major flu virus hits and wipes out most of the population; "Bag of Bones," an incredible and scary love story, and then last year I read, "Lisey's Story." If you have not read Lisey's Story yet, you need to. It's an experience, as are all of King's novels. His writing is so good that you are able to really get into the psyches of his characters, you come to care so much about the people in his stories, you really don't care when he stretches the boundaries of sanity. In fact, you come to appreciate him for it. He makes you think about his books for a long time after reading them. I'm usually hooked by his first sentence.

My other favorite authors have not written anything in awhile. I hear that Pat Conroy has a 700 pager that is due to come out this year which I am awaiting with baited breath. After reading "Beach Music," I didnt think there was another novel as great...then I picked up "Prince of Tides." Dear God, the movie paled in comparison, in fact, it really just was NOT the book. He is probably my favorite author next to King.

Haven't heard anything from Anne Rivers Siddons since her last wonderful novel, "Sweetwater Creek." She's a great Southern writer - I learned so much about saltmarshes, tidal creeks, the old Gullah culture, and "pluff mud." Then there's Sue Monk Kidd who, after "The Secret Life of Bees," left me aching for another novel in that same type of genre as "Fried Green Tomatoes."

Rosemund Pilcher, a Scottish writer famous for novels such as "The Shell Seekers," and "Winter Solstice," a book I never wanted to end, another favorite of mine.

This summer, I read "Evening" by Susan Minot which was a good novel, but the movie was even better - still not a great movie - but with Meryl Streep and her daughter, Vanessa Redgrave and her daughter, Clare Danes, Toni Collette, the gorgeous Patrick Wilson, and Glenn Close, how could you not love it? Sometimes I will watch a movie over and over again just for the sheer mood it invokes. I think I did that with "Something's Gotta Give," a fabulous soundtrack, by the way.

Anyway, my ramblings for a cold, rainy morning. I'm going to my reading corner now. May you find a good book to lose yourself in this Winter.

See ya!

Moving On

Just an update on our situation with Liberty receiving the wrong strength of methyl-B12 shots. The pharmacist made the shots incorrectly because it was "too hard." Dr. Bock's nurse had no way of knowing they were wrong. I should have called up to the office and read the prescription to the nurse when we picked up the shots, but I had no reason to believe they were the wrong thing.

We are glad to have found out this problem and have moved on. We received our shots from Hopewell Pharmacy the other day and will be getting everything from them, including the antifungal which we have started again at a much lower dose. Hopewell sends out our stuff so fast, it's amazing, and you can reorder stuff on line. I am really pleased with them.

I have an appointment with Dr. Bock next week, and, as far as I am concerned, we are just moving forward.

Liberty is doing great so far on the reduced dose of antifungal. For some reason, his appetite increased and he ate four new foods this week. That is nothing short of phenomenal.

After a rocky start, I am looking forward to seeing how my son does on the proper methylB-12 shots. My husband and I remembered that, when Lib received his first shot of the proper dose of MB12 in Dr. Bock's office in NY this summer, he immediately started vocalizing more.

In the end, I think that the lesson is, go to a reputable pharmacy and, as far as the MB12 shots are concerned, they have to be made properly and often small compounding pharmacies just cannot do it. Cut your losses and go to the big, reputable guys, namely Hopewell Pharmacy, Lee Silsby, and the other one that Dr. Bock's office recommends, Fallon's.

'Nuff said.

The Guest House, (a poem by Rumi)

"This being human is a guest house.

Every morning a new arrival

A joy, a depression, a meanness,

some momentary awareness comes

as an unexpected visitor.

Welcome and entertain them all!

Even if they're a crowd of sorrows

who violently sweep your house

empty of its furniture,

still, treat each guest honorably.

He may be clearing you out

for some new delight.

The dark thought, the shame, the malice,

meet them at the door laughing,

and invite them in.

Be grateful for whoever comes,

because each has been sent

as a guide from beyond."

Getting my feathers straight

When I need to rest, I get on a boat and go to San Salvatore, my Italian castle, and swim in the Mediterranean Sea. I need this kind of time-out. I want to bask in the warm sun on a rock or in a fragrant field, until I hear the bell ringing calling me to lunch or dinner... 'time out o' mind.

This is my all-time favorite movie that puts me back where I need to be, each and every time, without fail - and the best commentary on the true nature of Love, I've ever seen.

Love.

The "wrong" methyl-B12 shots?

I am at this moment in time a very hurt and disillusioned mother.

Because of the astute persistence of a certain autism mom who kept telling me to check Neubrander's site (the neurologist who came up with the methyl-B12 protocol), to check my pharmacy, to check my shots to see if they were the strength they are supposed to be according to Neubrander, today,I find they are half strength. Half strength.

Half strength means, not the proper protocol - the wrong protocol. Six months, and no one would have even noticed in Dr. Bock's office that we were getting a sub-standard MB-12 shot.

I have to question Dr. Bock's practice now and that pains me a great deal. I especially question his nurse. Do you know what she said to me? "Oh, well, give him two shots a day." I told her that my son had just been through hell this past weekend with severe constipation caused by her mistake, and there was no way I was giving him two shots a day, and more importantly, THAT IS NOT THE PROTOCOL and Dr. Neubrander clearly states this on his website. It's just wrong, plain and simple, and she doesn't know this?

This morning, I checked with all of my autism mom friends and asked them to read me their prescription. Sure enough, theirs reads differently than mine. Theirs is right.

I have about had it. I called and left a message for the nurse who was responsible for calling in the initial prescription. I want answers. Did Dr. Bock write the prescription wrong? Did the pharmacist read the prescription wrong? What happened? The fact that I never would have known leaves me feeling very empty.

Even my homeopath I saw today in the health food store knows better; he was apalled.

My son is okay. He survived the overdose on charcoal. He was not harmed by the low amount of B-12. We will order the new shots at a higher price from the correct pharmacy. We eventually will talk to Dr. Bock, if he is ever available. I might have to wait until my appointment January 29, but you can bet I am faxing a letter tomorrow to be placed in the chart.

It's just that I have lost confidence in my DAN! doctor, the one thing in my life that I thought was going right, and now I don't know how to feel. I emailed another DAN! doctor six hours away from us in Florida. We heard her speak last year and she is great. She is Dr. Kartzinel's partner, so her practice is slammed, too, but the thing about her is she is accessible. She emails you back. She is very available to her patients and that is what we need. At least she was last time I checked which was back in September.

I respect Dr. Bock's knowledge and felt so privileged to get in with him. But, now, the bloom is off the rose, so to speak.

Perhaps he can redeem himself. I cannot take advice from his nurse anymore. She is just giving out information that is wrong. Dr. Bock has no other nurses. So, it's me and their voice mail. Me, my anger, and their voice mail.

Slowly, my glass of wine is taking the edge off of the anger, I am slowly releasing my resistance. What will be will be. If we need to switch doctors, we will. We will certainly get better shots, the right shots. It's just six months of my son's life, that's all. WTF?

Dreams

My friend Carrie has been posting a lot about her dreams. I admit that I dream a lot and I love my dreams, but this past year it seems I have been in a "dry spell." Or so I thought.

It wasn't until I had been woken up abruptly again and again by my son this past week that I realized I'm dreaming but not remembering. And the theme turns out to be the same. I'm always losing my son. I'm always suddenly wondering where he is. How could I have left him like that? It's not the panic dreams like I had when he was a baby, common to new mothers. You know the ones where you get in the car and realize you left your baby at home, or at the store, or in the park, etc. Those are just fear run-off dreams.

But I realized that in my waking life, I have often said that I had my son with me finally, when he was born, and then I lost him again when he disappeared into autism. I wanted him so badly. I had a devastating miscarriage before him and it was so hard for me to get myself in a place of trust and peace and courage to go forward again. It's kind of like I'm here all over again. Wow.

So, yes dreams do reflect reality in so many ways. I suppose I am always looking for him, even in my dreams. The last dream I had was that I was in an airport and Liberty was suddenly missing. Then I found out another mother who had a child with autism herself, found him. She was in a different state, though, and I had to call her on the phone. I remember being so relieved and grateful.

Perhaps this reflects the fact that the most useful help I have received regarding my son's health has been from other moms.

I am convinced all autism moms are blood relatives.

Love.

Giving it Time

Our doctor and his nurse are not in their offices today. I called and let another nurse know about the experience we had with the charcoal and the Diflucan. She seemed to be rather shocked by it, but anyway, for now, we are resting.

My little son spent the entire day yesterday resting, only to get up around 4:00 PM, eat a little food, prance and skip to some music I was playing, and then promptly put himself back to bed at 6:00 PM. Does this tell you anything about how tired and wasted his little body must feel? I just feel terrible about this - even though I was just following directions, what did I do to my boy? It think it could have turned out worse than it did and that scares me to death.

Where was my intuition? I asked the nurse on Wednesday if the charcoal was constipating and she told me no, and also told me that the charcoal can't hurt him. I now beg to differ. I am really curious to hear what Dr. Bock has to say.

Meanwhile, there is a big part of me that wants to just stop all of this. I feel like my son is a guinea pig in an experiment, and, of course, the reality is, he is. If I had had to take him to the emergency room here this weekend, the mainstream doctors would not have understood at all what we were trying to do.

My sister says it's like I'm trying to practice medicine without a license, in the sense that there is no one here to observe my son and guide the progress, oversee the protocol. All I have are anectodal stories and a loose guideline for what to do and what to expect. In the light of wanting to recover my son biomedically, all of that seemed okay, until I saw how badly my son was hurting. It reminds me of when I took him to get his shots, especially the MMR. I didn't know what I was doing on that fateful day and now I can't take it back. I remember the hesitation, how I drug my feet, not wanting to take him in. I just blindly pushed forward because my doctor told me to.

In this recent situation, I think that if I've learned anything, I have learned to start out giving gradual doses of medicine to Liberty to see how he reacts first. The doctor did not tell me to do this, but so many other moms who are trying the antifungals are telling me they started at a reduced dose. This stuff costs $86 a bottle and it only is good for two weeks.

The Universe is telling me to slow down and be careful and gentle. If I decide to start this up again, it will be in a dramatically different way, and I will insist upon it...or change to some other alternatives like olive leaf extract.

But for now, we rest.

Learning From "Our" Mistakes

Okay. I've got it now.

The pain that Liberty was in yesterday, was not necessarily from a larger-than-normal amount of die-off; it was from killing yeast and then blocking the exit for the toxins to leave the body.

Yes, in a child with chronic constipation issues, anyway, why would you prescribe a strong anti-fungal and not a laxative, or suggestions for moving the child's bowels besides glycerin suppositories?

For the record, charcoal IS VERY constipating, at least in this child who suffered from it to begin with. It might be great at moving the toxins through the body faster and that is a blessing, but you have to get this stuff out as many times as possible. Most children will have diarrhea from the die-off and Liberty had some of that in previous days, but we were told to increase the charcoal and that was not a good suggestion.

I stopped the Diflucan yesterday. Did you hear the angels sing? Lib slept from 7 PM to 7 AM, and awoke feeling much better. Unfortunately, he still is passing the charcoal which was like concrete in his little body.

When I think of it, this situation could have turned into something really bad like a blockage and I would have had to take the child to the ER. Thankfully, that did not happen. I realize now that the two-hour writhing in pain was from his intestines hurting, God I hope we did not create pockets in his intestines. The last thing we need is to mess up his bowels, where I believe his issues started to begin with.

I want to thank my readers who emailed me about the issues with charcoal and ways to detox the body. I am very appreciative.

I hope that others can now learn from this mistake we made and be better prepared when deciding to try an antifungal. Even Stan Kurtz mentioned on his site that they put charcoal in applesauce and started the antifungal/antiviral gradually at a reduced dose. Now, this makes so much more sense, doesn't it?

Tomorrow I will call Dr. Bock's office and come up with a new strategy. One of my readers reminded me that recovery is not a sprint, it's a marathon, and there's no emergency, no rushing that we need to do. We just need to take it one step at a time in good faith.

Today, on this beautiful Sunday on the Gulf Coast, we are counting our blessings for the restorative sleep we got, and for the peace of mind that comes when we realize we don't have to keep pushing the river - we can step back and regroup.

I am sure the wonderful Dr. Bock will come up with a new plan for us.

The Saga Continues...

Liberty's worse night ever. I say night but really it was morning.

I thought he would have had a better day, knowing what I know now about the charcoal not to be given until at least two hours after the Diflucan. And, Dr. Bock's nurse told me to give two to three capsules twice a day on an empty stomach. This takes some planning.

So, he had a great day at school as I did not give him the Diflucan in the morning. After he got off the bus at 2:30, I gave it to him. No problem. He ate. I waited for the food to digest. So, about 7 PM, I gave him the charcoal. He slept. I went to bed early, just in case we were up.

At 1:00 AM, he was up, raring to go. He ran around the house and turned on all of the lights, he giggled. I somehow got him back to bed.

At 3:00 AM, he was up again with high energy, but happy, seeming to be okay. Thought we were out of the woods. I gave him Motrin in case he had a headache or bodyache which is common with yeast die-off.

By 6:00 AM, he had been up playing since 3:00. Then the howling began. Then the screaming, the kicking, the throwing things, pushing me out of his room, slamming his door hard over and over again, I mean, just totally out of control and in pain. Two suppositories, nothing. I throw on clothes and get my husband to watch Liberty, mainly so that he does not hurt himself. He hurt his leg pretty badly the other day by kicking something and has a giant, bulging bruise.

This raging goes on for two hours.

I went to the store and got an enema, as much as I hate to post that, this is the reality. I come home to the continuing screaming, give him part of the enema. Nothing. About 20 minutes later, he finally moves his bowels. He gets better. Thank you God.

He is suddenly hungry and happy and bouncing around the house.

Then the howling and screaming again. I noticed that he ate my homemade gf/cf graham crakers now made with sucanat which has less sugar. I am thinking that this is exacerbating his symptoms.

I received a comment from an anonymous reader (bless you) that the charcoal is constipating. This, after the nurse said she had never heard of it being constipating. I told her I thought it was, too.

This morning, I call Dr. Compain, the on-call physician for Dr. Bock. He says that it is unusual to have a die-off this bad, this far into the game, and that he must have an incredible yeast overgrowth and my need to go on a special diet (I did not want to hear that.) He told me to reduce the dose and to give him prune juice and increase Vitamin C to help move his bowels and he, himself, said the charcoal IS constipating. Obviously, I need to clue the nurse in, right?

I am half-dead and about sick of trying to figure this out for myself. He said Dr. Bock might tell me not to give the Valtrex until we get a handle on the yeast because he said the Valtrex will "make the yeast go crazy." Oh my God, any crazier than now? It can be worse?

I have heard that stopping altogether can make it worse. Dr. Compain said we might have to be on this for a few months before the Valtrex.

I cannot take another morning like this one. I will be divorced, for certain. Ask me how hard this is on a marriage. My husband busts his butt at work, works all of the time because he has to since I cannot work as much and now Liberty's meds are costing more. I need emotional support when I'm going through this, though. I work too, at home. I run the household and take care of this child 24/7. We need to be in each other's corner. He is emotionally shot out and so am I. We are just at each other's throats. This does not help.

I looked back over my notes, and there have been nights where Lib slept. So, maybe we are getting through the worst of it. God, I hope so. It is 1,000 years until Monday when I call Dr. Bock's office and get a new plan.

Until then, I will cut the dose to 2/3, and go out and by plenty of prune juice today. Cut out the crackers or make them with Stevia. I tried them with stevia, and they were not that great, but will try again. The bean flour I use is high protein, so carb wise, it shouldn't be too bad, should it? Or cut them out all together and then wonder if he will go through withdrawal from that?

Folks, I am open to suggestions.

Keep us in your prayers.

I think I am deciding to stop the antifungal until Monday when I can talk to someone at the office with a clue. I cannot take another night like this, and if can't tolerate it, what must my poor child be going through?

It's 10 AM, Lib just fell asleep and I am on my way there...

The Aim of the Anti-Viral

At the end of this post is a link to a video of Stan Kurtz's son Ethan. Ethan recovered from autism. Stan, his father, is not a doctor, but he discovered what worked for his son and also recovered himself from ADHD in the process. Pretty amazing stuff. He is well-respected in the autism community.

The brief video demonstrates the difference in Ethan pre- and post-antiviral.

I am encouraged today, as we are on day 15 of the anti-fungal. Last night between 12 and 3:30, Lib was up screaming and howling. I got him his charcoal and some Motrin. I rocked and rocked. Finally he slept and amazingly got up in time for school.

Liberty's liver function tests were okay, so now we get the Valtrex, the anti-viral filled. I must prepare myself for Phase II.

I might be chewing rawhide just to get me through Liberty's die-off reactions, but I have to try. If he could have anything as remarkable as Stan's son, it will be well worth it.

So far? Moments of incredible eye contact. An amazing day at school today since I did not send him with the antifungal first thing. He brought his bag of crackers to the teacher and said, "Cracker." On a computer reading game he scored something like 14 out of 17. What will he do with the anti-viral I wonder? I read it doesn't work for all kids on the spectrum.

As soon as he got off of the bus, I gave him the Diflucan, and even with the charcoal I gave him, within about an hour, he began a kicking, howling, screaming fit and threw things all across the room. He tried to kick a large painting off the wall. I gave him a suppository to move the yeast through, then put him in an Epsom salt bath. He got better.

This is die-off. This is some bad die-off. It's like helping an addict get clean. It's hell. I'm trying to stay strong for the well-being of the boy.

Anyway, here's the video. Pray for us. Film at 11 as they say. I will keep ya posted.

Postscript - The compounding pharmacist told me to give the charcoal 2 hours after the Diflucan. Now, that would have been useful information, say, about two weeks ago. So, that is another reason why Lib is having such trouble, the dose is being reduced by the charcoal.

You know I'm a nutcase at this point.

http://www.youtube.com/watch?v=aEw0Y5LJ6vg

Aah oatmeal!

Hey, check it out. Bob's Red Mill just came up with gluten-free steel cut oats and rolled oats! I thought this was noteworthy; something wonderful to add back into the gf/cf diet!

https://www.bobsredmill.com/GFOats.php

Same Yeast, Different Day

It's one thing to read all about various biomedical treatments and the experiences of other parent's children, and quite another to actually perform those treatments on your own child.

I thought I was thoroughly briefed and prepared for yeast die-off. I was not prepared to see the Sweetest Child on The Planet rehearse for Damien Returns.

Oh...My...God.

I had to go pick up Liberty for a fit the teacher finally realized was not "just a tantrum." I told her to watch out for something like this and be sure and call me, but she said she held out because she "didn't want to call me." I don't really understand that. She wrote on her note she sends home that he was like that for "40 minutes." Poor little kid.

He was quite lathered up when I got there. The assistant came out carrying a screaming, kicking thing wrapped in a blanket that I did not recognize as my son. I jumped out of my car, still in my work-out clothes in which I did not get to work out-in, wielding a syringe filled with black, powdery stuff and proceeded to insert it into my son's mouth. He screamed, he batted at me, he kicked when I put him in his car seat. I whisked him home. He got out of the car screaming, tripped and laid prone on our driveway sobbing. I'm sure every Gladys Cravits in the neighborhood was observing this unusual scene.

I finally managed to get him in the house and get him some Motrin. Within about 15 minutes, the Alien was gone and my son was sitting on his bed smiling and laughing. About 20 minutes after that, I was on the phone with my sister who was commiserating with me when suddenly I saw that Liberty was covered in...something that was GI Joe-colored green...running down his leg. I dropped the phone and rushed him into the bathroom.

Anyhoo, today anyway, the constipation was cured.

s'all I'm saying.

I dialed my doctor's office in NY and thankfully was able to speak to the nurse. She said it sounded like a pretty severe case of die-off, and that I had to keep giving him two to three capsules of charcoal every day on an empty stomach and to make sure he moves his bowels as much as he can.

I will have to try giving him the charcoal in the morning before he eats anything.

It's all so much work. Not having a way of communicating what he is feeling is the pitts and I know for him, bless his little heart, he is just frustrated beyond any of our imagining. He does not mean to hit or kick. He just feels lousy.

No one can tell me how long this will last. No one knows.

I ask that anyone who is reading along with me today, keep my sweet little son in your thoughts and prayers. Maybe throw me in there with him for good measure, will you? I need all of the good vibes I can get right now.

For all of the pain my son is going through, I do hope there will be a significant gain. If not, I guess we can say we tried. I will get liver function studies done tomorrow and that should be revealing and probably predict whether we go forward or not.

By the way, as I was searching for information on dealing with yeast die-off, I ran across something I have never heard of before. The article stated that people with heavy metal poisoning have a worse time with yeast die-off, and that the herb Cilantro detoxifies the body of mercury. Anyone ever heard of this? Here is a link to that interesting tidbit of information.

http://www.modernherbalist.com/cilantro.html

It seems an odd coincidence that just last night I was looking for my recipe for fajitas. I never noticed that it called for Cilantro (an herb I rarely use), and I turned to my husband and said, "What is Cilantro good for anyway?" I will certainly ask Dr. Bock about this.

Back in the Swing of Things

Wow, 2008. How old does that make you feel? Actually, I am excited about the new year. I have an upsurge of energy and have this feeling of major changes with the world and good things eventually to come.

Plus, I'm just glad Christmas is over. I am not a person who waits for Christmas all year. Usually, it catches us at a bad time; being both self-employed, work tends to fall off around that time and we have not been able to put money away like we say we will all year. The expense of Liberty's care has made sure of that, but at least we can say that Liberty is doing well and in a better place than he was the year before and that gives us a measure of satisfaction.

This being the first day back to school for little Lib, I cleaned the house instead of resting today. I had no idea just how much I had let fall by the wayside. How did we breathe in this dust? It was great to finally get the tree out of the living room. Finally, we have some more space. Perfect for doing yoga, which is in my plans - big time. I never felt better than when I was practicing. I have a class I am going to go to soon, but also am doing some yoga poses at home.

Two weeks of unstructured time is hard on Liberty. I was going to direct my energy toward potty training the week after Christmas, but we started the anti-fungal and all hell broke loose so that was out. I got a note from the teacher today saying that Liberty had a great day, hugged everyone and was in a great mood, but was not engagable as before and lost his signs he had mastered, and generally wandered away from where he was supposed to be and kept trying to take off his shirt. Well, somewhere around Thanksgiving, he developed a sensory issue with seams in his shirts and other's clothing, as well. I have no idea from whence this annoying habit came. God only knows. I can't go over all 13 supplements and pick out a culprit, if there is one.

I started to get that feeling like I am just useless at home, and it is my fault that he is not doing well in school, but then I remembered that usually when he has a break he regresses a little. His little body has been through an awful lot. And, just tonight, I finally got him to move his bowels - the kid was beyond constipated and that is bad when you are trying to get rid of yeast. I triumphed! I celebrate any and all little victories.

So, I told his teacher that he is probably just adjusting to the new routine and for the first time in all of these years, made a decision not to take on any guilt. A first for Kath! I'm just simply tired of it - I know that I personally have done my best and that is all I can do. If it falls short of the mark of what I should be doing, I am open to suggestion. Period.

I am thinking that beginning this weekend, we will have nothing but frozen dinners or take-out and I will dedicate myself 100% to potty training, using the timer.

The other great thing about school? He's in bed at 5:30 PM exhausted from the day's activities.

Off to cook our dinner and, you guessed it, open that bottle of wine.

Yeast-Die Off

I started Liberty on the antifungal/antiviral regimen the day after Christmas. Thank God, I did. For the first day he was okay, then the screaming began. Charcoal tablets really do help. So does Motrin which I am not thrilled about giving him (dye-free, of course), but he also was cutting a tooth. A double whammy. He has been up quite a bit screaming, but then it really got better yesterday. Then, today, the worst screaming episode in his entire life, complete with throwing things, kicking and grabbing himself.

Ask me how old I look today. Old and tired.

Diflucan is what we are giving him first for two weeks. Then he gets liver function tests and if they are okay, we start the Valtrex, the anti-viral. I have not enquired as to the expense of the Valtrex. The Diflucan is $86 per bottle and I found out the bottle is only "stable" for 2 weeks. So, the compounding pharmacist here was so sweet, he took pity on me and invented a way to give me some powder to mix to get me through the month to make a second bottle. So, now it is only $80 per month instead of $172. This is a real sock to the gut right after Christmas. Not to mention my husband's truck acting up and in the shop. At the pharmacy, I actually cried out after I thanked the pharmacist profusely, "My God, I have 20 bucks left!" I was quite pitiful.

I wrote about this method called "carpet bombing" and referenced J.B. Handley's piece over at the Age of Autism: http://www.ageofautism.com/2007/11/is-autism-an-in.html#more.

This too shall pass, I keep saying to myself.

Today, Liberty had the worst screaming fits ever. He ate around six Ritz crackers that I had sitting on the counter in the kitchen. He never cared for these ever, but apparently, today, he wanted to sample them. About 20 minutes later, the screaming began. I really did not know what to make of it at first. Without going into too much gruesome detail, he was terribly constipated. I gave him a suppository and then had a phone call. Big mistake, people. That's all I'm saying. I just took a break from cleaning all of the rooms in the house and stacking the bedspreads and pillows, etc. in the washing machine that he touched with poopy hands to write this post.

Well, I started this blog to chronicle our biomed journey. I wish I could wax poetic, could write some "great" posts like so many of you folks who kindly read my blog. But, the sole purpose of this blog is really to keep as a diary and share our experience.

So, anybody else encountered yeast die-off with their antifungal? I am sure most people have, as it initially increases yeast in your gut before it leaves. But, I wonder to what varying degrees the symptoms of die-off are? Liberty went through something like this initially with the gf/cf diet and we thought it was yeast die-off. This is month eight on the diet (sans the Ritz crackers).
I am happy to report (and it is the only reason why I am not up on the ledge again) that I am seeing some incredible things with Lib. The eye contact is not just a little, he is fully present and initiating contact. He is pretend playing with his Little People and his cars and trucks and giraffe and things he did not care about that much before. He made me sit on the couch yesterday and got right up in my face and smiled, and touched my face and hair and smiled back at me when I smiled at him. He is trying very hard to talk. Very hard. It's painful because you're just rooting for him in your mind all of the time (come on, baby; come on baby...).

I hope and pray I'm doing the right thing. I have a feeling in my gut (bad pun) that I am. Time will tell, I guess. I have read a lot about yeast, how it can be not only in your gut, but in your nasal passages and in your brain. Reading about it is not quite the same as experiencing it and seeing symptoms that others have reported parade themselves right before your very eyes.

Ah well. Off to pour my glass of wine.

Happy New Year

It seems kind of strange to be venting in one post already today, and in the same breath wishing everyone a happy new year, but this is the way things go. You vent, you feel better, find a little gratitude and go on.

Today, the sun is shining and my son laid down for a nap. Did you hear the angels sing?

I am making my shrimp egg rolls for New Years, and probably taking down the Christmas ornaments and hanging out tonight on the couch with my husband...and probably Liberty, too, since somehow I have a feeling he will be up.

Oh well, this is where we are today. It's not glamorous or serene or easy, but it's still our life and we are grateful for it when we can stop and take a breath and remember how much worse it could be, and how really good we have it.

I look forward to new things in the new year, including a new president.

And I wish everybody a bright and shining New Year.

The Truth

When a child is screaming and has no speech to tell you what's wrong, it wears a person out. In fact, it's hard to always be the comforting, compassionate, grown-up in a situation like this. Do it for, oh ,say about five years. See what you look and feel like.

Parents come to me for help because they think I know something. I have a blog. I make good gf/cf graham crackers their children like. I have one of the best DAN! doctors in the world now. We've been down many roads. I have tons of URLs to send out. Most of the time, I appear to keep a positive attitude.

Someone made a remark that I was somehow an expert on autism. Nothing could be farther from the truth. I don't want that crown.

Hey people, I'm out here in the trenches with you. My son is better in many ways, but he is not recovered. I'm hoping for that. I'm working toward that always. But I have my hard times, my moments of doubt, my anger at God and the world and vaccines and...just all of it. The why, why, why that never will be answered. Sure, I know better. But when you're tired, you just feel like throwing in the towel. That's where the, "Surely, I didn't sign up for this" whine comes from.

You know, depriving a person of uninterrupted sleep is part of torture. Then, making them stay up all day and keep moving, always working, cleaning, preparing food, cleaning up food, changing diapers (how many years now?), etc. How can you expect to be okay?

I think I saw at the last DAN! conference a course for parents in how to take care of yourself. If I can just get my son back into school, I can go use the massage gift certificate I got for Christmas. I need a few of those per month. Fifty pounds and he still hangs on my neck and wants me to hold him. My body is sore.

I started taking some of the good supplements that Lib's doctor prescribed for him. I've got to get a grip on my health. I have an appointment in February to get the hormones checked and balanced. The thyroid and adrenal glands are just about shot out. I saw my homeopath last year who told me to get in balance before I slide into good old menopause.

I spend a great deal of time caring for my son, but also trying to manage all of these dark emotions. Dealing with a child with autism permeates every level of your life, marriage not withstanding.

You have to find ways to deal with it, manage it. I need a break. I don't have the money to pay anyone, though. I recall that I used to use exercise as a way to feel better and maintain my sanity. I stopped that this summer when the whole DAN! protocol got put into place. I was too tired to put on my shoes and walk. I think I will bundle Liberty up today and just get out and get some good endorphins going.

A blogger friend of mine wrote today about feeling hypocritical, posting about the positive and sometimes living the negative.

It's not hypocritical. We have our good moments and our bad ones. They can't be helped. Some days we are going to allow our well-being in, and other days will be far from it. We need to be able to reach out to people who understand. I've met many moms through this blog who have helped me, albeit across the miles, just to feel a little more connected, like I'm not in this alone. We post about what helps, we vent about our frustrations.

We hope that something positive will eventually come out of this hard situation in which we are living today.

Yes, my friend, in the end, gratitude for what we do have, for what IS going well in our lives, will eventually right our overturned boat and put us back in that stream. Sometimes we just have to wait until the dark shadow passes to get there. Sometimes we need our friends to keep it in perspective.

Thank You Donald Trump!

I thought it was worth posting the link to The Age of Autism for a few articles on Donald Trump's recent comments on autism and vaccinations, if you have not heard about this already.

Trump speaking out on vaccines will give the autism community a further boost, perhaps even help the push for insurance companies to cover treatment. I'm so grateful.

http://www.ageofautism.com/

The twilight zone of Christmas vacation

I have hardly had time to post anything since Christmas, I've been so exhausted.

After Liberty lost his tooth, I never thought to expect another tooth to be pushing its way in. Well, of course, that is what they do. I guess I thought I was done with teething. Liberty developed this strange high-pitched howl about a week or so ago and now I guess it was probably this tooth pushing through, although I don't remember having pain when my permanent teeth came in. That was a million years ago, so maybe I did, I don't know. My mom is not here to ask.

I have not had much sleep in the past few weeks. I finally realized it was probably his tooth that was causing his inability to sleep. I have also started his anti-fungal and he doesn't seem to be having much trouble stomach-wise, but who knows? He won't point to a body part. All I can do is ask "What's wrong?" over and over again to no avail, then he gets frustrated and the crying turns into a tantrum. Poor kid. He can't tell me what he needs. I wind up feeling completely helpless. And this is usually in the wee hours of the morning.

Another unusual behavior is for him to request a DVD to be played, sit and watch it once, then get to a part he doesn't like wherein he brings me the remote. I run it back for him but then he sits and cries. If I turn it off, that is worse. I have then committed the heinous crime. Then, he's just gone, screaming and crying and I'm at the end of my rope. About 20 minutes later, he's over it and onto the next thing.

He had a great Christmas and was very engagable. He has done pretend play with some of his toys. He acknowledged all of my family members, and he did seem to understand what we were saying. He enjoys having them all around.

BUT, two weeks is a long time to be off from school, that's all I'm saying. Seven more days and counting.

Last night I was up with him at 3:00 AM, then 5:00 AM, then 7:00 AM. I can barely get myself going and get things done around here, before he is pawing at the door to go. I have tried to find things for him to do, but we now have a week of continual rain and very cold weather coming our way. I can only afford to go to a bouncy place so much and play. At school, they really work the kids and when he comes home from school, he is asleep by 6 PM and sleeps through the night. This is what has really thrown me off. I want my good sleeping child back! I want MY sleep back.

And, you know how when you are tired, things don't look as good as they might be? I'm perceiving through tired eyes.

I wish I had more news to "report," or nice stories. We are back to just kind of hanging out and surviving until school starts again. I can say that Liberty is giving better eye contact and attending. This seems to be getting better with each day, and it seems his receptive language is increasing. One more week of the antifungal, then after liver function tests, we start the Valtrex.
So, I suppose we are moving forward, though I think I'm a couple of good night's sleep shy of seeing this clearly.

Merry Christmas

To my friends in the blogisphere, I wish you a very Merry Christmas. You mean a lot to me!

My focus has turned to baking, shopping, planning, and making sure I have made enough fudge for my family members to put us into our traditional sugar stupor.

Have a wonderful holiday!

Knock me over with a feather

After the last few days of Liberty's mystery symptoms, I picked him up at school today and the teacher met me and said, "Ms. K (autism consultant) was by today and she videotaped Liberty's remarkable progress." I stared at her blankly. Huh? She said he's doing marvelously in school. Making great progress.

Okay...

Then they said one of his classroom assistants brought her scissors in today and evened up Lib's hair for me (I hacked at it last night). It turns out she apparently was a hair dresser in another life. She wrote me a note that said, "I hope you don't mind I trimmed Liberty's hair, and when he is due for a trim, let me know and I will bring my scissors."

Then she said she will be glad to babysit Liberty through the long Christmas break, in fact the teacher and both assistants offered their help. They said they will miss seeing him and so they don't mind helping me. After I told them I really had to concentrate on potty training and did not know if I could really send Lib to their house in just underwear when he's not used to the potty yet, they said, "Oh, don't worry, we'll help you do that."

I feel like I won the lottery, or at least I did something good in my chain of karma.

Merry Christmas to me!

Today on Dr. Phil

I don't know if you caught The Dr. Phil Show today, but it was about families dealing with autism. He had Dr. Sears on the show. I thought he did a pretty good job, and this time I did not have to brace myself for any comments about vaccines not causing autism, or autism being incurable.

He had a couple on who were dealing with a child who was out of control and combative. I kind of had to laugh; the husband was gone 80 hours a week, leaving the wife at home to deal with the child and his other siblings. He said something like "I work a lot but it doesn't affect our relationship." Phil zeroed in on that right away, of course. This couple really had no idea the gift that Phil offered them - help from a school in Massachusetts which he says is the best in the country. I had no idea. Anyone know of this place? http://www.mnautism.org/

There was also a member of his staff who had wonderful results with what she only called "early intervention." She did not name ABA or anything, really. Would have loved to have known what she did.

And, sadly, there were a number of moms on the show whose non-verbal children had been abused at school. Chills you to the bone; you have to be extra careful with your children who cannot speak.

Anyway, you can check out the show and message boards here:

http://www.drphil.com/shows/show/974

Here's a quote offered by a Mom on the show regarding dealing with autism:

Don't wait for the storm to pass. Learn to dance in the rain."

Multiple Guess

We're back to some unusual behavior that is appearing with some progress, as well. This seems to happen whenever my son gets sick and/or when he is really making some big strides.

For example, he is really into learning numbers, shapes and colors. Even though he is still non-verbal, he is pointing and "counting" along with the DVD he has. It's his favorite suddenly and he must watch it when he comes home from school and before he goes to school. He likes it when we sing along. He looks at me and smiles and waits to hear the cue to start counting and then he runs up to the tv and puts his finger up to the shapes to count them when they light up. This has never happened before. He's so bored with all of his puzzles and things at home, that I feel I need to ship them all out and get more challenging things. It looks like we are moving up to the next level of his development. This is very positive.

But then...there is some toe walking, and a little hand flapping, a strange howl he has perfected as an attention getter and a few fits. Hmm. Suddenly, he cannot stand the seams on his shirts, or on my shirt and fusses and picks at them. I have taken to turning his shirts inside out and letting him wear them that way. Suddenly, he won't let me cut his hair, can't stand the brush on his head. This is the kid who had minimal sensory issues. Dr. Bock said this is common. One step forward, two steps back. Still, it throws me off kilter when it happens.

It has happened so much that I am able to tell myself not to dwell too much on the new "negative" behaviors. We have introduced some new supplements. Maybe that's it. I know that things change quickly; maybe this is just a phase.

It's hard when he's sick, though. He has been dodging a cold for a week. The homeopathic medication works pretty well, but the little tike still cannot blow his nose.

For the past few nights, he has awakened with a scream. He wants me to pick him up and rock him. Then he starts laughing and wants me to tickle him. This is not so cute at 2 AM. I am truly exhausted this week.

Sitting in the rocker, my mind goes through the possible things this could be:

a. his tummy hurts
b. he is constipated.
c. his nose is stuffy.
d. he is having a reaction to something I gave him.
e. he's too cold.
f. he's too hot.
g. he's hungry.
h. he's scared of the dark.
i. it's too light in his room with the Christmas lights outside.
j. he somehow was exposed to gluten.

Still, it's anybody's guess and I've run out of intuition at 2 AM.

Down the Rabbit Hole

"Would you tell me, please, which way I ought to go from here?"

"That depends a good deal on where you want to get to," said the Cat.

"I don't much care where-" said Alice.

"Then it doesn't matter which way you go," said the Cat.

"-so long as I get SOMEWHERE," Alice added as an explanation.

"Oh, you're sure to do that," said the Cat, "if you only walk long enough."

And so it is on this daily sojourn with my son and the diagnosis that changed our lives, that I must remind myself over and over again, we are getting somewhere. True, life is not the destination, it IS about the journey. But the reality is as John Lennon put it so well, "Life is what happens when you are making plans." None of what we have experienced with our boy, or our marriage, was in our "plans." Stuff happens and that is just the way it is. How you respond, how you perceive it, is up to you.

For us, our journey and destination are now one: Simply, the state of well-being.

I didn't know we were part of an autism epidemic three years ago. I didn't know what a road lay before us. Had I known then what was going to transpire, I think I might have jumped off a bridge because it's only in looking back that I see more clearly just how much we have been through. I didn't see that giant boulder rushing toward us. We suffered a lot in the beginning. We were so confused and did not have the resources that are available now. As little as four years ago, information about biomedical treatment was just not available to the mainstream.

My son did not sleep through the night from his birth until the gluten-free, casein-free diet he went on this past May. For four years, I was physically and emotionally exhausted and actually am still recovering my health now.

Even so, I think it took me awhile for an understanding of this thing called autism to sink in. Now, that my son has turned five, I see it so very clearly now. When he was a toddler, it was harder for me to pinpoint, it was not so glaring - at least to me, an older mom at 42 with no other children, no friends our age with small children. It was something that slowly dawned on me. Now, I can see it in the children of others; can spot it almost immediately - still many pediatricians do not know how to diagnose it, or drag their feet.

Pediatricians were of absolutely no help to me at the time of Liberty's diagnosis, so I turned to the internet, like so many others and discovered "The Underground" as I like to refer to them now - those pioneering families of children with autism who were recovering their kids on their own. This is how I found the DAN! doctors. No one in my vicinity had ever heard the word.
So, the parents of newly diagnosed children will begin now to have more resources available, at least in the form of information. Jenny McCarthy came along and made the CDC shake in their boots; she spread the hope of recovery, made more people aware of the diet, and dared to say on national television that "no way in hell" would she vaccinate her child again. I respect her a lot for putting herself on the line. But she knows her mission.

Eventually, our voices will be heard. I wonder how loud we have to get, though? Maybe one day insurance will actually cover services. Perhaps these parents won't feel so alone as we did. I do my best to try and connect parents, basically to hope, where the "action" is, where the truth is. I did not want to join any groups in the beginning. I was too scared that if I joined a group, it would seal my little boy's fate. He was only 20 months. It was almost unthinkable to hang a diagnosis of "disabled" on my sweet baby. It still is, even today.

Thank God, I now have a doctor who said to me the other day, "If I wait for the hard science before I treat a child, I will lose a whole generation of kids, and I'm not willing to do that."

It really is like we fell down the rabbit hole and, as things keep getting "curiouser and curiouser," have spent our time ever since wandering around, this way and that, asking for the way through, the way home. It does feel like a dream, but it's a very large collective dream, now, isn't it?

So, we just keep walking along, following the well-worn paths through the woods that other parents have made for us, and in that way, ensure that we will, indeed, get somewhere.

Love.

Getting the Bugs Out

I had a great follow-up appointment with Dr. Bock. I actually had it early this time because of the snow storm that was rapidly moving into the New York area.

Basically, he said Liberty showed some lead and mercury, but nothing terribly significant where he would push the DMSA chelation right away, and that Liberty could have been detoxifying all along (I did some Bio-Chelate at one time) and also the MB-12 shots help.

[I have to stop here and advise anyone who has received results in the mail from France not to try and interpret them themselves...I was convinced my son had lead poisoning!]

Dr. Bock, however, did think that the Virosis findings on the lab results from France were significant and, since I told him about Liberty still having some cradle cap, too, we are going to first do an anti-fungal with Diflucan, and then an anti-viral with Valtrex. We tweaked the supplements a little again, too. After our next follow-up appointment we will discuss doing an IV chelation in another DAN! doctor's office in New Orleans. I will cross that bridge after the virus issue is addressed.

I will have to get liver function tests to make sure those are okay while giving Liberty the Diflucan and Valtrex. I just hope we don't have any severe reactions of die-off. I am sure we had some when we went on the gf/cf diet (7 months ago). I had about 3 weeks of all sorts of wierd acting out, then peace and sleep reigned. Well, that hell was well worth it.

Anyway, I love the fact that I enjoy talking with Dr. Bock and when I get off the phone I feel encouraged and supported. Dr. Bock is really a cool guy. He also has my son on some fantastic (green) superfoods which I appreciate. Liberty's appetite has doubled and he has gained weight.

So, I am particularly excited about doing the anti-fungal/anti-viral routine because of this article by J.B. Handley entitled, "Is Autism an Infection?" that I read about a month ago over at The Age of Autism:

http://www.ageofautism.com/2007/11/is-autism-an-in.html#more

When I read it, something about virus/fungus/metals just rang true. Jenny McCarthy talked a lot about anti-fungals in her book, too. We will see. I know I will have to be careful. The only side-effects that Dr. Bock said he has seen are mainly agitation with some rare stomachache and headache. The nurse told me to get some charcoal to use if Liberty has an upset stomach.

By the way, I had to sign a consent form for Valtrex being "off label" since it is used to treat the herpes virus.

Onward, and hopefully upward, we go.

A Different World

Tomorrow is our appointment with Dr. Bock. Let's hope he's on time. Okay, I can always hope. Love him. Appreciate him. He is so busy, though.

I am eager to talk with him about Liberty's test results. I don't have them all, and I am avoiding thinking too much about them today. I have to keep telling myself that this is why we "hired" Dr. Bock - for his expertise. Still, it's one thing reading anectodal stories and researching the DAN! protocol, etc. and quite another to look at your child's tests results in your hands with metals glaring back at you. I knew it and thought I'd be relieved. Initially, I was. Then, the questions started rolling in. Where did he get lead, PCBs, mercury....from vaccines, sure, but lead? That much lead? Is this really lead poisioning I'm seeing?

Yesterday, I was in Target, and on my way out the door, I stopped at a wall of Christmas lights, thinking I might get a cheap set and throw some on our big evergreen out back. I flipped the box over and on the back there was a warning, paraphrased as something like this:

Warning, handling these lights exposes you to lead. Lead has been shown to cause....[all sorts of nasty stuff]...make sure you wash your hands before eating or touching a child....

I thought about decorating the Christmas tree the other day with our gazillion lights we store in that box in the garage. Did I wash my hands? Eat a Christmas cookie while decorating? How many times did I touch Libby or did he touch the lights? Even the cute little figurines they sell that light up and have the train going around the track and Santa flying overhead with his reindeer have the same warnings on the box.

It's getting so I just can't keep up.

Now, they say don't microwave anything. I told the teacher the other day to take Lib's food out of the plastic and put it on paper plate when she heats up his lunch. He won't eat a sandwich, so what am I to do? You don't eat cold spaghetti (well some of us do, but that's beside the point), or pot roast or chili (his three major foods) cold do you? I could send water in a glass bottle, but they frown on that because it can break.

I just watered my lawn and touched the lead-infested hose. I forgot to wash my hands. Now my keyboard is probably covered in lead dust.

I just want someone to tell me how to live so I am not further contaminating my environment anymore. I like to stay in the solution and not dwell so much in the problem. I know there must be a new habit or routine I can get into. I've bought Seventh Generation products. I read labels. I clean with Simple Green. I guess I need to get a shower/water filter for bathing now.

Some people say, live your life and don't worry about it. I used to think that way. But now that I have Liberty and he is living proof of our toxic world, I think we have to, not worry so much, but be conscientious and take appropriate measures. Thing is, where do you get reliable information about what is toxic and what isn't? I don't have a lab in my home to test everything.

I know to wash my hands a lot and especially now because of the Staph bug. Do I just swab the house down routinely and vacuum a lot? I think so. I mean, it's all I can think to do.

I think I will ask our homeopath what he thinks about this and report back about it. Save time scouring the internet, like I have that kind of time anyway.

I would love to hear about what kind of measures you have taken to "detox" your family from these environmental assaults! We need a new way to live in this obviously different world.

Results Finally In: It's Metals!

It's very odd to be doing a happy dance over finding out your son's metal load is off the charts, but I'm thrilled because we know what to do about THIS, for certain!

Our appointment with Dr. Bock is Thursday. The results of the metal challenge we did with the one pill of chelation he has in his office, so I don't know the results of that.

But, in looking at the porphyrins/pterins test from France, I see that lead is the highest, and mercury second. There are also other things that I truly don't know how to interpret, including his creatinine level and a viral load.

I will wait until Thursday, but I just had to shout it out people:

I KNEW IT, I KNEW IT, I KNEW IT!!!!

This validates for me the vision I had when I was meditating after a yoga class some time back in March or April. I silently asked what Liberty's problem really is...and I saw an image of THE FTD MAN. I thought it was just something crazy, or what I ate for lunch that day, but then some time went by and it hit me:

The FTD Man is Hermes in mythology......The God Mercury.

That's all I'm saying.

Setting the record straight

My answers to common questions from well-meaning people who don't "get it":

1) Why don't you just accept your son the way he is and quit worrying? (This is usually in response to telling them about the DAN! protocol, which apparently seems too fussy or too hard):

Answer: I do accept my son the way he is; however, my son has an illness most doctors do not know yet how to treat. To the best of my knowledge, he didn't come into the world with it, and it's my job as his mother to help him ever-increase his well-being and his ability to adapt and live in this world as it is. Us mothers know when we are really worrying. But, what you may perceive as worrying, is just our forward-thinking minds anticipating what could be coming down the pike and to help our kids be ready. If we didn't do that, we would be negligent.

If you spent a lot of time in my world; that of IEPs and therapists and teachers and doctors and articles and the media, you would probaby "get" us mothers and why we do what we do.

2) To the probably not so well-meaning occupational therapist who brazenly announced to the entire waiting room that Liberty was crying because, "he basically has had everything done for him..."

Response (which is late in coming because at the time, my jaw could only drop in incredulity at the insensitive remark from the therapist with five neurotypical children at home):

The thing about my kid with autism is that, one week he might suck at fine motor skills and, therefore, I cannot spend 8 hours making my son pinch his tiny fingers around the top of his socks and pull them on his feet. I have things to do like pay bills, cook, change diapers, go to the grocery store, cook ahead GF/CF stuff, and work. That's just the way things are.

The next week, his skills might have changed, and even, perhaps, his listening skills, and he might be able to do some motor planning and actually pull his foot up towards his little fingers that are trying to hold the sock for him to stick his toe in...he might get that, but he might not be able to actually pull it on.

The next week, he might get it, but maybe he can only put his sock on halfway and then take it off and throw it across the room, about 300 times before I finally put the damned shoes on the feet and head out the door...to see you, by the way, the therapist WHO HAS MORE TIME THAN I DO AND AN ASSISTANT TO TEACH HIM HOW TO PUT HIS SOCKS ON!!

I mean, come on people, give me a break. I do it all, and I try and spend time and teach, and show and talk and demonstrate, and then show again....but don't tell me it's my fault because he has had everything done for him. That is total bullshit and the people who know me and see me in action and know my son know the truth. I try to help him to be as independent as possible. In our situation, I don't know how much understanding there is when we talk. He gets things more when you demonstrate, but having speech and understanding other's speech comes in handy when you are trying to TEACH a child how to do something. Attention span is extra nice, too.

Most therapists and teachers I have contact with know that I am more than willing to accept constructive criticism and am always open to ideas for improvement of what I can do for my son on a daily basis. I don't dig judgments from a "professional" who has no idea what she is talking about. Perhaps being smug makes her feel important.

3) What bedtime stories does he like?

Answer: I have never read my son a bedtime story because his attention span is so short, he cannot allow me to read and turn pages. He also likes to look at books by himself. The moment an adult shows up to help, he's not interested. Shocker, isn't it?

4) Don't you know that you have to take time for yourself before you can really be of help to anyone else?

Answer: Come live in my world and then say that to my face without bursting out laughing.

My version of "taking time" for myself is different from yours because I rarely get a break by myself. I rarely get to go out to dinner. Have not been to the movies in years. Forget "vacation," what's that?

School has been a blessing because I know my son is with people who understand what he needs for most of the day. But, I don't get to take a class or get my hair done or anything like that unless it's during school time and I don't have to work. I definitely don't get to go out of town and have never been away from my son all day or overnight. I've never even slept in since he was born. And even though I might have a babysitter for a short time, any longer and it gets difficult for the babysitter and for Liberty. Most of the time when people ask me, "Why is he crying?" I don't know. It's real simple, I just don't know most of the time what is really going on with him, but I am skilled at knowing what to do to redirect him. I make him sound like he is a behavior problem, but he is far from that. He is a delightful child. He just gets frustrated, like anyone in his situation would do, when he cannot communicate his needs.

Taking time for myself now means I pray. I do a nanosecond of yoga. I sometimes get to get out and walk a little. But, I pray a lot throughout the day and I meditate a lot and always ask for spiritual Guidance and to stay connected to Source, and I'm telling you, that is one "muscle" that has gotten a lot of exercise over the past few years and it helps a lot.

A Whole Big Lot.

I guess I needed to finally got that off my chest.

Have A Lead-Free Christmas!

Here are some links to toy companies who sell safe toys. I particularly loved Ebeanstalk which looks like it is for young children, 4 and under, but I found some things that my son would love like their cars and garages.

http://www.ebeanstalk.com/

Blue Dominoes site lists about six more links of safe toys and is a nice site itself.

http://www.bluedominoes.com/kids_gift_ideas.php

http://www.grandrivertoys.com/

And, here is a list of safe toys from Fox News:

In light of the recall of nearly 1 million Chinese-produced toys tainted with lead paint, below is a list of toys made in the USA:

• Battleship• Bicycle Playing Cards• Boggle Jr.• Candyland• Chutes and Ladders• Clue• Connect Four• Crayola Crayons *• Life• Louisville Slugger• Monopoly• Mouse Trap• Operation• Parcheesi• Play-Doh *• Pop-O-Matic Trouble• Radio Flyer Discovery Wagon• Scrabble• Sorry• Stratego• Tri-ominos• Trivial Pursuit• Yahtzee• Melissa and Doug U.S.A. Floor Puzzle (Most puzzles are made in the USA!)

* Note: Not all packages of Crayola Crayons and Play-Doh are made in the USA -- please check the label.

Also, anything you buy from the American Plastic Toy Company is made in America.

You can also find American-made toys on these Web sites:

• www.ShopForAmerica.com• www.ZebulonUSA.com• www.usmadetoys.com•

www.unclegoosetoys.com• www.holgatetoy.com• www.maplelandmark.com

Finally, for more information on how to buy American, visit: www.howtobuyamerican.com

Anything's Possible!

A 10-year-old girl raised money for research for her brother with autism. A lovely story in case you missed it...

http://abcnews.go.com/GMA/OnCall/story?id=3950843&page=1

After complaining about blasted hot summers...

Beautiful Gulf Coast winters!

Finding the Good Feeling Place

The following (in purple) are direct quotations taken from Esther Hicks (The Teachings of Abraham) as seen on the first version of DVD, The Secret.

I share this because I have gained a lot of insight and peace by reading the Abraham books and philosophy. I made sure that I wrote them down in my journal because the quotes are in regard to relationships.

I think they are particularly apropos in my situation with my son because I need to stop wishing for him to be other than he is, so I can be happy. For certain, having a non-verbal child is really hard. I long for his voice. I long for a conversation. I long to hear his take on the world, his perceptions. I want to KNOW him. Right now I simply intuit who he is, if you get what I mean. It is kind of like having only peripheral vision. I feel him and his energy, I have a perception of his beautiful Spirit. Such an affectionate sweet child, he is beloved by all of his teachers, therapists, and family. And, I am grateful for his good nature which I felt from the moment I held him in my arms.

As I read all of your blogs, I celebrate with you each time you transcribe a funny or profound conversation you have had with your child. One mom reported this morning that her son just began singing and what a joy it was to hear. It gives me hope. But, at the same time, I must accept the very real possibility that my child will remain nonverbal. He is not mute, he makes noises and he tries to say words. But it is not the same as hearing him speak words. So, even though I have been in a grieving process since his diagnosis 4 years or so ago, which I believe is only natural, I do need to be able to maintain a sense of stability, balance, and peace with where we are each day. You have to move on...which is easier said that done, and everyone must find their own way.

Abraham says that you must first do what you can to find thoughts that bring relief and get yourself feeling good, and from that place, you can then attract more and more better feeling thoughts, and better circumstances through the powerful Law of Attraction. I know this is true because I have turned unpleasant feelings and situations around very quickly by practicing this technique. And, trust me, I have had many opportunities to apply this wisdom throughout the years.

Therefore, I share the following wisdom from Abraham with you that really helped me to do this:

"If you knew your potential to feel good, you would ask no one to be different so that you can feel good. You would free yourself of all of that cumbersome impossibility of needing to control the world, your mate, your child. You are the only one who creates your reality."

And, the following quote has helped me tremendously in regard to my marriage. Having a child with autism creates a tremendous strain on that, as I am sure many of you know. So, I remember this and it has helped me avoid a lot of conflict:

"You must orient yourself to the best part of them. Make a list of positive aspects. Those people will become mostly that to you. And, even though you cannot create in their reality, if they are in a mood or an attitude that does not match the mood or attitude that you have about them, they will zig while you zag. The Law of Attraction will not put you in the same space together. The frequencies don’t match up."

I just discovered yesterday that my son has a bottom baby tooth that he is about to lose. I cannot believe that we are here already! I cannot tell him about the tooth fairy. I guess that is what precipitated me feeling a little melancholy today. But, then I thought, perhaps, I will save all of the baby teeth that I can, and, if he ever does talk, I can tell him about the Tooth Fairy and boy will he hit the jackpot overnight.

My job is just to love him and that's what I do.

Interview with Dr. Kenneth Bock

I just stumbled onto this recent interview at the Atlanta conference. A reporter from Atlanta's Channel 11 spent 35 minutes with him. It is a really in depth interview that covers latest thoughts and methods in the treatment of autism. I got more answers myself by watching this interview, and he's our doctor! He mentions the creation of something called the 4-A Foundation which is supposed to be a way to help families meet the expenses of treatment. He said families should not have to be rich to see a DAN! doctor. Thought you might like to see.

http://www.11alive.com/video/player.aspx?aid=83522&bw