Heavy Metals Revisited

Liberty's repeat urine metals challenge came back very high for lead. About three and a half times the norm. I am waiting to hear from the doctor's office today about how to proceed. My appointment was cancelled when Lib's doctor got sick himself and they could only reschedule it for another month out. In the meantime, I had been calling and leaving messages to find out about all of our labs we had done, including the urine metals challenge. I wanted a repeat because Lib was not anywhere near potty trained when I tried to collect the first one and I knew it was not much of a sample that I managed to get, and probably rather dilute. This time, he was able to sit on the potty for all of the times I collected the urine.

And, I've always known he was full of metals. I've just been waiting, doing all of these other things like dealing with yeast and Vitamin A levels, jumpstarting methylation cycles and sulfization cycles, getting the bowels moving, upping the nutrition from supplements. And, in the meantime, dealing with school placement, all of the IEP's, therapy and theories.

But, always, I've been thinking, pleez already, get the metals out of my boy. I know that Mercury is the main culprit and always has been. I know that the double round of antibiotics right after the MMR pushed my son's little body right over the top. I know it all takes time to restore balance.

(And what of our environment here in Florida - the air quality the worst in the nation, the polluted water, the polluted fish, the Super Fund sites - did that play a role in the whole toxic set up?) Sigh. More theories. More speculation.

It's been exactly one year since we trekked to New York to see the doctor. Two years since I saw a doctor in Arizona who was not a DAN but got my son started on supplementation. One year of methyl-B12 shots. Five months of clearing yeast.

If anybody's ready, it's me. Let's roll.

Happy Birthday Liberty Marshall, the Love of My Life, 6 years old today.

You are a beatiful spirit and loved by so many.

Plastics - Safe or Not?

My sister forwarded an email to me saying not to drink water from bottles that have been sitting in a hot car. The e-mail makes reference to Sheryl Crow getting cancer this way, and that the hot water bottles are apparently more toxic for women. I don't know about that, but I do know many plastics, especially water bottles, are harmful to drink from.

Snopes calls this an urban legend, but I have been hearing for a long time now about how plastics are unsafe. Who do we believe? Are we all wrong? Where do we get the best information ? We are all so good at using Google, but how do we know the information we gather is correct?! This is what is frustrating about the Internet.

The hot plastic supposedly leaches cancer causing chemicals into the water. Hot or not, I thought that most plastic water bottles leach chemicals and that many other plastics do, too. I have just found out that the Gladware I was using to freeze Liberty's food also leaches (according to an article I read). I did not know that. I always heat up the food in a porcelain ramekin that I send to school.

I think I posted at one time about levels of a chemical called BPA that is unsafe for all of us and is found in common plastics. You definitely should not microwave in plastic. We have been hearing this for a long time now on television shows and newscasts.

Here is a website that helps explain the harmful BPA's and what kind of materials to use, what plastics are safe, etc. I think we can trust the website...but who knows for sure?! Someone email me!

Here are the bottles I use for Liberty that we love so much: http://www.kleankanteen.com/ I know I can trust stainless steel...I think.

After over a month of craving Finding Nemo, Liberty has now moved on to Thomas the Tank Engine. He watches with the sound mostly off, since he covers his ears. (Don't know why). But, he laughs out loud...again, like he gets it for the first time.

* Sigh.* If only someone would explain it all to me.

But, that's not possible, so in the meantime, I bury myself in books, hoping and praying that the next 4 weeks of camp will be good. It's been a slow start but at least he is getting one-on-one right now. More on camp as it develops.

I'm almost finished with the new book, "The Art of Racing in the Rain." This story is told from a dog's perspective. I've never read anything like it! I'm 3/4 of the way through and loving it. Turns out, it's really a very spiritual book. It is both funny and sad, and it's great writing.

On another note, I was supposed to have a follow-up phone appointment with Lib's doctor but the good doctor got sick. (They called me after I waited patiently for an hour and a half). It was to be re-scheduled but now I can't get an appointment for a month! I am not too happy about that. I'm really quite anxious to know what the heavy metals test results are and to get on with chelating. Just get on. with. it. I've read so much about chelation that I am really confused. Everyone has their opinion about the correct way to chelate. I feel lost in biomed at the moment.

Ah well, in the meantime, the summer wags on. Hope you're having a good summer.

American Spirit

Check out my sister's new blog.

Skippyjon Jones

Is This Cute As Hell or What??

From School Library Journal:

Kindergarten-Grade 3-This is a wildly wonderful book about a hyperactive kitten, Skippyjon Jones, whose head and ears are too big for his body, and whose imagination is too intense for his mama. According to her, he needs to do some serious thinking about what it means to be a Siamese cat instead of a bird (Skippyjon always wakes up and eats worms with his feathered friends). She sends him to his room, where he imagines he is a Chihuahua ("My name is Skippito Friskito./I fear not a single bandito"). Chock-full of rhyming chants and Spanish expressions, the feline's adventure as a doggy Zorro ends in chaos. His frazzled mother gives him a hug anyway and says, "Say good night, Skippyjon Jones." "Buenas noches, mis amigos," says the kitten, as he bounces on his bed all ready for another adventure. The buoyant and colorful cartoon illustrations match the exuberant text perfectly. Spanish-speaking children will be especially delighted by the words and humor; others may be a little bewildered by all of the foreign phrases and will need some explanation, but the story definitely has the potential of a fun read-aloud. A good multicultural offering.

This is our nickname for Liberty - it really has stuck. Sometimes it is transformed into SmileyJon Jones, or HungryJon Jones, or SillyJon Jones.

Silly parents.

Another Good Read

I just finished reading this book, "Unaccustomed Earth," and I really could not put it down. It is a collection of short stories but they each have a common thread and all involve characters from India. It's one of those books where you stop occasionally and ponder what one of the characters said and you relate so well..."oh, God, I get what she means..." You know that type of book. I handed it to my sister the other day and she called me thanking me profusely, saying she could not stop reading it either and had not read such beautiful writing in a long time.


So, I must have her other books.



Her first book, "Interpreter of Maladies" won a Pulitzer Prize. You can read about her and that book here.



Her second book, "The Namesake," was made into a movie in 2007. I never saw it.


She also happens to be absolutely gorgeous.

So Much Remains to Be Seen

I got a lift this morning from a fellow blogger friend after reading her post about some advice she got. I told her I was going to write down what she said because it really increased my hope.

An update on my camper. He was out sick, unfortunately, last Thursday and Friday with some kind of a stomach bug that was going around the camp. He recovered pretty quickly and this weekend we started a new preparation of his methyl B-12 shot. As a matter of fact, it is a preparation called methylhydroxy B-12. Now, it's hard sometimes to distinguish what behavior is linked to a new biomed strategy or rather a result of something else, but he seems much calmer and we are getting some very nice communication from him.

For example, at school last Wednesday, they were thrilled because he said three words. At home the other day, he brought me a bag of chips and said, "Cheeup." This morning he went to the refrigerator to find his water bottle and he said, "Whah, whah, whah." I have taught him to tap his chest twice for "I want," and then point to what he wants and he will do this with very little cues. Pointing is a new big deal. He does not drag you so much from place to place. And the eye contact and engaging factor has increased.

So, though I got down like I always do this past weekend (I constantly respond to thought 'my son is going to be six years old this month and still he is not speaking to me'), I do believe he is coming along.

And, of course, I can't talk about him without the subject turning to potty habits, but today, he sat on the potty and moved his bowels. Oh My God. That is really a big deal!

Note to people in a similar situation as ours, then: It's so darn easy to get down and respond to what we are observing or what we THINK we are observing in the moment, but we forget that our children have their own potential, their own timetable, and we really cannot predict the future. We could save ourselves so much trouble by stopping imaging the worst case scenario all of the time, and try to at least put a little space around our children and our expectations for that X-factor...the sudden growth spurt, the good things that can happen we can't even begin to imagine.

I think that that space I am talking about is LOVE.

So, yes, so much does remain to be seen. Thanks, my friend.

Endangering "an entire generation of children..."

If you missed this over at The Age of Autism, it is a wonderful article written by Katie Wright.

Also, while searching on Google for a developmental pediatrician who is supposedly becoming a certified DAN doctor in our area (miracle?), I ran across this site by Dr. Sears, listing the "vaccine friendly" doctors. Thought it might be of interest to somebody.

Evening

I'm sure you've seen Evening. The book was wonderful. As always, they changed the details of the book to fit the screenplay, but they did a beautiful job. BUT, this movie is fast becoming my favorite, even up there with Enchanted April. It's a beautiful movie. If you haven't seen it, check it out. It's one I've watched over and over, especially since HBO is running it right now.

They Believed in Me...

This is a great video of Raun Kaufman, the person around whom the Autism Treatment Center of America was created. He WAS a child with autism!

If you don't know about the Autism Treament Center, you can also check it out here. Notice there is a place called "Webinars" to click on and watch a video.

The other day, I watched a wonderful presentation via my computer given by one of the counselors of the Son-Rise program. The topic was on how to get your child to be more verbal. I learned more from that counselor than in all of my dealings with therapists and teachers. That particular video is supposed to be on there some time today. Thought you might want to give it a look!

Their main message: Believe in your child's abilities. Your expectations DO affect the outcome.

American Airlines Incident

This is yesterday's news but what do you guys think of this?

I'm sorry but my heart does go out to the mother. Liberty had a meltdown on the flight back home from NY last summer. He was exhausted and he could not help it. Everyone on the flight glared at me. Out of all of the people, only one man patted my shoulder and told me everything would be all right. We never fly anywhere with him, but this was necessary to get him to his doctor. I remember breaking down with him and crying as the people stared on and gave me angry glares. It was really a nightmare.

"A Place for My Stuff" - Rest in Peace, George

If you are offended by some rough language, you might want to pass this by; this is not the roughest he ever did, however. This is one of my favorites. George Carlin -he pushed the envelope and made us think. I'll miss him.

Camp at Last

We took Lib to his new classroom for Kids for Camp, the summer program for children with autism. As many first days go, it was somewhat chaotic with a lot of people wandering around confused, but Lib was ready. First, he was happy he got to ride in Daddy's big truck, which he will be doing every morning and then I will be picking him up around 3 PM.

Each child has their own teacher and gets one-on-one attention the entire day. They will be getting ABA training. Lib is undergoing potty training, and is also in a class geared for improving communication.

So, I am just relishing the quiet this morning. The house is a mess but I am glad to have made it through these last two weeks with my back and tooth problems.

And, the best part: I saw a dolphin in the bay on my way home. This has been a sort of recurring sign to me that all is well, for it is a rarity to see one that far inland from the ocean.

A few nights ago, I had a dream that I was contentedly swimming in the ocean. Then a thought occured to me that there was undoubtedly a great white shark that swam in the depths below me. Just as suddenly as I thought this, a pod of dolphins gathered around me, as if to support me in keeping my thoughts on only the good, the sensation of swimming in the water, and not on the fear of what might be.

Yep, dolphins are a good omen for me. :)

Unreal Images from Iowa

These pictures tell the story of what is happening to the heartland. Looks like Hurricane Katrina's destruction.

It's Been a Long Two Weeks

We are nearing the end of the two-week break between school and Liberty's day camp for autism. I feel as though I've been in a daze, just kind of sleepwalking through the days. Mercury went retrograde and when that happens, we always feel like we are backpeddling. It's supposed to be a good time to mend nets so to speak, tidy up, and put things in order until the energy gets moving again. My ability to do that was impaired when I hurt my back last week. Too much stress going on. Happens every time. This was particularly bad this time, though. I have been hunched over in a waddle I can only describe as the Mrs.Wiggins walk. In the midst of all this, I also had a tooth get really painful and found I have to have a root canal and crown. My husband just had to have a wisdom tooth pulled.

Geez.

Well, I suppose there are lots of good things to focus on that occured during this time. Lib got to know Nemo quite well. He has had a good rest from school so he can be better prepared for the intensity of the camp he is going to (9-3 every day with his own teacher and ABA therapy). I can't wait to see how he responds.

I just got back from a blood test I put off as long as possible that Lib had to have. I have some cream I rub on his arm to numb it. Worked like a charm the last time. This time, they had to use the other arm which did not have the numbing cream on it. He screamed like a banshee while my husband had him in a vice grip and I strugged to hold his arm. I felt so bad. He bounced back, but I didn't.

Why don't they have a bar on the way out of the lab lined up with shots of tequila? These things just wear me out.

This afternoon, we are going to the dentist to get his teeth cleaned. After that? I don't know but I plan on doing lots of lolling about. I'm just worn out.

Here's Mrs. Wiggins at her finest. Remember her?

From Nemo to Vivaldi - Liberty's Most Requested Video

For My Wonderful Sister, on her impending arrival...

Oh!

the

Places

We
Will

Go!

Just Keep Swimming, Just Keep Swimming....

It's all here...

Waiting

for

You!

Twilight

Never would I thought of reading any book about a vampire. "Twilight" was recommended to me by one of Liberty's therapists who read the entire Harry Potter series. She said she could not put the book down. It took me to about page 300, wondering at first why I wanted to read about a 17-year-old girl, and then...I was hooked. I could not put the book down. This is not blood and gore, not at all. It is more a love story and about a really interesting family. It's more suspeseful and entertaining than it is gruesome. I didn't even find anything about the vampire lore ridiculous or hokey. It was fascinating.

I had no idea about all of the other sequels, or that Twilight is already being filmed as a movie. The other two books are New Moon and Eclipse.

Critics are apparently calling Stephanie Meyer the next J.K. Rowling (author of Harry Potter).

Surprisingly, this was a good summer read!

What A Difference A Day Makes - Okay Make That Two Years

Yesterday, was a banner day for us. I had no idea what a gift the day would bring.

I prepared to go back to the same neurologist to make sure that my son was not having absence seizures. Two years ago, we went to a neurologist here and had an EEG done, only to be told by that neurologist that he did not know what it meant. There was an abnormal spike wave in the occipital lobe. I have documentation that says he did not know what to make of it. It left me feeling very odd; that the supposed "best" neurologist in town did not know how to read the EEG; I only knew that he found out we had seen a doctor in Arizona who had started Liberty on supplements and that I said we were seeing good results. As I recall, the supplements were things like Cod Liver Oil and Super Nu Thera vitamins. We had not done anything that would be considered back then "way out" like, God forbid, chelation. Basically, the neurologist was very nasty to me, saying he did not believe in any of that diet "crap." He said Lib could have a seizure, convulse and even die. He wrote a Rx for Diastat suppositories and told me that if he seizes to "ram it up his butt." I was dismissed. I felt abused. It was a terrible experience. I remember sobbing at home.

So, fast forward two years. I happen to have a friend whose child was diagnosed by a neurologist here in town, with whose name I was unfamiliar. She told me that he is apparently associated with the same office where we went two years ago. She told me to check him out as he is "open" to biomed treatments. I was skeptical but I got a referral and finally an appointment but not for a couple of months.

The other day, something told me to call their office and their was a sudden cancellation. We could get in the next morning! (insert twilight zone music here)

I went to the same crowded waiting room, had to fill out the same mountains of paperwork, depressed that Liberty would not sit while I balanced the clipboard on my knee. He kept touching everyone and making his noises and I thought, "Oh, it's bad. They are really going to tell me how bad it is now."

Finally back in the examination room, the door opens and in walks this 50s-ish, bronze-skinned man (from Brazil I later learned) in impeccable blue jeans and tennis shoes. He has salt and pepper hair and a well-trimmed beard and such kind eyes. He takes my hand in both of his and gives me a very sweet smile and thanks me for coming.

He motions for me to sit and he goes right over to Liberty and establishes rapport by playing with him and rough-housing, taking Lib's shoes off and stuffing them under his shirt, peeling his socks off and throwing them over his shoulder, etc. Liberty stops stimming and looks right at him. They high five. I am sitting in the corner quietly observing.

This man's presence fills the room. It is calming. I am safe.

He focuses his deep ocean blue eyes on me and the first words out of his mouth are, "You are the expert." I say, "Pardon..." He says, "Raising a child is like creating a work of art - or baking a cake, some we need to leave in the oven a little longer..." He goes on talking like this. I'm loving it! He says, "I want you to continue to do all that you are doing, because you know best, and you are doing GREAT. YOU are doing GREAT." He even talks about LOVE and SOUL. How I wish I had a verbatim text to recreate this awesome conversation. He even tells me that Liberty, like all children, is teaching us.

But, I'm almost fainting at this point when he says, "I am here for you and will be always. Anything you need, anything you think you might want to try, I'll do it. Any papers you need signed, anything at all, you can call on me. I am part of your support system."

I am rendered speechless.

Then he puts his clear glasses on and says, "I know why you are here." Now, I had not written out anything about my return visit only to say that I need to rule out seizures. He says he pulled up the records and the report of the EEG from last year. He holds it up in front of me and he says, "Spikes in the occipital lobe - are you kidding me? These are SO COMMON in all children. This means NOTHING. It is NOTHING." He tells me that with absence seizures, I would be seeing a lot of staring spells and goes on to describe things that clearly I have not seen.

I begin to cry, it's such a relief. He says he knows what I am going through and have been through and gives me a hug.

So we go on to talk about why Lib is not talking. He gets the chart of the brain out. I ready myself for a science lesson. Instead, he says, "Speech is in the left brain, so what do we do? We stimulate the right brain!" I innocently say, "We do? How?" He says, "MUSIC! DANCING! SINGING...SING IN A FOREIGN LANGUAGE, EVEN BETTER."

I told him that we were doing therapeutic listening with an OT. I told him about the Finding Nemo marathon Lib has been on and Liberty's sudden lurch forward in progress with scissors and pointing and saying "okay." He told me that kids do that, they plateau for awhile then they spike with new behavior.

I told him about the upcoming camp we have gotten Lib into. Turns out he is one of the people teaching the teachers for the kids autism camp at the university here! Is this not uncanny?

I float home. So many pounds have been lifted from my shoulders. I have to process this all day and night.

Wait - it gets better!

I looked him up on the internet and found he is a published author. There are two books on Amazon he has written!

Things are changing all around us folks. I have great HOPE.

OH...and he thanks ME for coming. He said, "No, thank you, I am honored."

World Mercury Project

A great website; thank God for people like these. I am so interested in Eric's story, I can't wait for the documentary.

Howard Hughes Medical Institute

For what it's worth, I thought this might be of interest to some of us.

I saw a piece on the Howard Hughes Medical Institute for biomedical research located in Chevy Chase, Maryland on 60 Minutes. Apparently, Howard Hughes created the institute as a tax shelter when the air force threatened to pull all of their contracts with his company. Unbeknownst to him, it wound up becoming a premiere lab for biomedical research, as their are billions of dollars available for the scientists to conduct research without having to apply for grants and fill out mountains of paper work that can impede progress.

Of course, I immediately wondered if there is research being done on autism. It was not mentioned in the story, so I went to their site and typed "autism" under their search engine and 87 matches returned!

I don't know about you, but this is reassuring to me. I have been upset that the government has not launched and funded massive amounts of research into various aspects of autism, including vaccines.

The story did mention quite a lot of work being done with stem cells at the institute.

I believe there is a place to email the scientists. So, perhaps it would be worth a few minutes to leave our requests and comments for these folks at what looks like a wonderful place.

Ah, Florida.

Some of my best memories took place in the limestone springs that Florida is pocked with; these are manatees in the picture on the right.

and the beautiful beach I live near now...

How To Tell If Its Summer...

PLENTY OF PESTO FROM THE GARDEN...

fresh basil+ olive oil + fresh parmesan + garlic + pine nuts processed to make a bright green paste

...fresh tomatoes for the top and poppyseed bread to go with it.

oh the heavenly aroma

- Okay, other than the fact that it's 98 degrees outside -

Pesto IS summertime.

P.S. (Susan there will be some waiting for you in your refrigerator...)

Green the Vaccines March June 4

In case you missed it, here are Jim and Jenny speaking at the rally. If you've already seen it and wept, feel free to pass it by. It's worth watching, but it also made me sick to my stomach to think my precious child is included in these numbers (1 in 150).

No IEP Casualty

I made it through Liberty's eligibility meeting. Basically, by law in certain states, before a child turns six years old, he has to be tested and given a label. The testing is for eligibility for continued services in the school system. Florida's law recently changed so that the previous label of DD or Developmentally Delayed could change to Autistic Spectrum Disorder. In many states, children are not tested until eight years old because of the big growth spurt that can occur.

At any rate, I made it through without crying, without becoming too depressed. I know that the tests are only snapshots in time of where we think he might be developmentally. We decided it was not necessary to change anything in the IEP we just did in April.

But, it's still hard. No first grade for my boy, just "primary" ESE class. The teacher and both assistants who adore Liberty will be leaving. Budget cuts have made rearrangement necessary and that's sad. I get used to folks and come to depend on the ones that Liberty adores.

On a brighter note, Liberty used scissors all by himself for the first time in OT - no modified scissors, no hand over hand. It's a pretty big deal!

We have an appointment with his doctor Monday and I am asking for chelation finally. I feel that the MB-12 shots have helped tremendously and that has helped him to detoxify from metals. I really want to try chelation. I'm looking over what Dr. Bock says about it, and also Andy Cutler. I would love to hear your experiences with different methods.

School's out for us tomorrow. I can't wait to see how Lib does in autism camp in 2 weeks.

I wish everyone a wonderful summer!

Nemo, the Teacher

So, an update on Liberty's Finding Nemo marathon:

I got a few very helpful emails from fellow bloggers about the magical qualities of this movie. I realized that Liberty was watching this movie again with new eyes, like he just "got" it, and indeed, I really do think that a light bulb went off and he understood it suddenly.

Since last week, he is able to point to the screen when I ask him to point out Dory, Nemo, Marlin, and Gil. Most significantly, I found him in his room with his old Finding Nemo book (when did we get this, 2003?) and he was poring over the pages.

He squeals with laughter and rolls on the floor slapping his thighs when Nigel, the pelican flies into the dentists office and all hell breaks loose. He is scared over and over again when the diver appears to take Nemo and when Nemo gets stuck in the aquarium filter...scared but thrilled at the same time.

He LOVES this movie, and he is learning.

All of his reactions are appropriate. More importantly, I see my child does indeed have language. Not actual speech yet, but he has language. In fact, his receptive language has increased. He is understanding! I can tell him that we need to get his socks and shoes on and turn around and there he is socks in hand. Last night I told him he needed to brush his teeth and he got up and took the toothbrush out of my hand. This is HUGE stuff.

Thankfully, I have been able to make the shift in my perception that children can learn in many different ways in their own time on their own schedule. I always thought I believed that until Liberty came along and challenged me to test that theory, and more to trust Life, that all really is well somehow, not according to the way I think things should be.

There are teachers everywhere.

Alex Barton

Here's an update on the news story everyone has been talking about. If you have not heard yet, a child with Asperger's was voted out of the classroom by his class in Port St. Lucie, Florida, encouraged by his teacher! It was a very heartbreaking story. Since this happened, there have been enough bloggers and emails to get this teacher re-assigned (how about not allowed to come near another child)? I've received a lot of emails about it myself but never posted anything, so click the link above to read about it.

Calling Dr. Bombay, Emergency! Come right away...

I'm at another one of those frustrating points where I just feel like I'm not the right mother for Liberty. Because, a Saint, I ain't. I wish I was all Mother Love and Pure Patience and Tolerance, but I guess everyone has their breaking point. Kind people will write to me and say that I just need a break, to get off by myself, to get a massage, etc. But, what I need the most is a change in perspective. Would that I could call Dr. Bombay (come on you remember from Bewitched?)

I'm a person who is really great at detail. It's why I'm good at my job. I pay attention to the fine points. I have the kind of energy some people might label Mouse Energy, which is the ability to see up close as opposed to Hawk Energy which is the ability to rise above and see the parts as the whole. I've said before that Lib is under the microscope like a lot of children who are undergoing treatment. Parents are always observing reactions to new supplements, lack of supplements, judging quality of poops, you name it, we're observing it.

But I'm too up close to Liberty most of the time. I don't have the ability to pull back and "put it all in perspective" like my mother used to say. This is where I need to lean on others to help me correct my vision. I'm sending out my SOS.

I do exercise gratitude, though. It's not that I cannot count my blessings. I am actually in the habit of that now. I don't lose sight of my blessings because it can always be worse.

I just cannot seem to find a good feeling place regarding my son. I know that I have to do that in order to obtain peace.

The thing I am having trouble with is acceptance of what is, because I don't know what "what is" IS. Does that make sense? Sometimes I think Lib is progressing nicely and I am kind of in this steady state, and then other times, I look at him and I think, "Oh God, he's going to be six years old, he's been under a DAN doctor's care for almost a year and...he's not progressed very far." Of course, I am measuring progress by speech. I'm telling ya people, this is starting to really get to me. I want to talk to my son. I want to hear his voice. I want to know what he feels. I want to know him.

And, as you can see, I think these depressing thoughts and then I react to them as if they are real. I am not unconscious about this process. I see what's happening.

Still, I cannot find that place of rest with What Is. Can I just order one of these?

At this writing, Liberty is in the kitchen eating his pretzels and making a kind of "whoop, whoop" noise. Prior to this he was eating his yogurt by himself which is a major accomplishment because he will even wipe his mouth with a napkin (wipe his nose with a Kleenex, too!) but then he can't resist mashing the yogurt that has glopped on the floor into the carpet and playing in it like he is a baby/toddler.

He came home from school and I knew he wanted to go watch Finding Nemo. It's his new favorite thing. He wants to watch it over and over again. I guess this is where I use the word "perseveration," or do I? Am I really obliged to use the lexicon of the autism diagnosis, really? Do I really give a crap about all of that anymore? My personal experience of Liberty has been turned into the lingo of the diagnosis. He "stims" and "perseverates" and has a "need for sameness" and doesn't know where his body is in space, and...OH GOD I'm drowning in the language of the disorder.

You know I was more at peace when Liberty was so much more mine - when he was not the property of the school system and the experts. So much mine.

I don't want to know the why anymore...(unless I find out he is having seizures after all and boom here's your medication and you're done - or was that a dream I had?)

Today, as I was driving in the car, I was thinking about this obsession with Nemo over the last weekend. My son loves the movie and I think it's one of the best animated films. It has no offensive soundtrack, and it's fun to have on because it is all underwater and mostly ocean scenes. I dig that, too. It's doubly fun for Lib because there happens to be a tv in our bedroom (not hooked up to cable, thankfully) that he can watch the movie on and he likes me to get in bed with him and hug him tight during all of the exciting and scary scenes. This is kind of cool - a new kind of sharing because he is looking intensely at my face and he is sharing emotion with me. ALL of that is great.

B U T ... as I stated before, I knew when he got off the bus, the first thing he wanted was for me to turn on the tv. I wanted him to go to the bathroom and sit on the potty. He can't talk, so he just gets intense and kind of holds me tight and makes a noise and a face that lets me know he is mad. I say no and tell him to go to the bathroom first, then we will put on the movie. He gets even more intense with me and that is when I just lose it and yell at him. He stops and looks at me with those big eyes and then I feel like the shrew of the year. The worst mother. But, he does go in the bathroom and he obeys me from then on. I don't strike him or anything. I just raise my voice but I'm at the point I want to scream bloody murder, do you know what I mean?

And, trust me I have screamed into pillows to God. Oh boy has God gotten an earful from me.

I'm SICK OF AUTISM. And, I do not consider anything about it to be "awe-some".

Sure, there are some children who are completely verbal with a diagnosis of autism and they will knock your socks off with their insights. That IS cool. But it is NOT where Lib is concerned. It's a constant heartache. And yes, I need to let go of that analogy because I get lots of pain in my chest.

These blogs that talk about encouraging neurodiversity and "leaving their kids alone" just piss me off. I think they are not still scraping poop off the walls. If they were, they might sing a different song. Autism ain't so beautiful then. I know in my heart of hearts this is mercury poisoning.

I thought when I had a DAN doctor, I'd feel better. But, the DAN is so busy, I don't get to talk to him much. When I do, it's just kind of a once over of the chart, and a few ideas to try...and another year goes by and my boy is still lost somewhere in it. [I even had a dream that we drove all the way up to New York to see the doctor and the doctor and the whole staff were smashed, just drunk as skunks. And I was so pissed! ]

The only hope that I can muster right now is that Liberty did get into an autism camp this summer. Not the sleep over kind, but a day school where he will be privileged to have ABA therapy all day long with one-on-one attention. We are having to do a fundraiser for the camp just so we could get him in because we could not afford the $4,000 it costs for each child to go. So many children made advances last year (for instance all of the children were potty trained after six weeks, some began speaking) that I was sorry we were not able to get him in last year when it was only $400. All of the kids that got in last year were automatically enrolled this year. We were on a waiting list.

Ah well, as another mom of a child with autism said, "What can you do? Life goes on..." I suppose that is the bottom line.

I feel the need for an I Love Lucy marathon coming on. Besides a couple of beers, it's the only thing that can help me now, I think!

Not to mention the love I get from fellow bloggers. I need you guys. Greatly.

The Amazing Bodymind

If anyone has had experience with the Feldenkrais method, please comment. I see that Anat works with children with autism, too. It has really given me food for thought today. I also saw on Anat's site that she taught a child to read by working with his body. Interesting.

The Story

Taurine

After almost six years of getting up at night with Liberty...I have at last found something that makes this child sleep.

Although Liberty did begin sleeping better when I took him off of gluten almost exactly one year ago today, he still has some times where he wakes up for no apparent reason. I have been reading a lot about undetected seizures being a possible reason for the wakings and unexplained crying, and have decided to go to a new pediatric neurologist and get the MRI and another EEG and find out if perhaps Lib is having seizures that could account for his lack of speech development. (I tried to do that a couple of years ago but the so-called expert here in this town pretty much pegged me as an idiot for doing a gluten free diet and giving my child supplements like cod liver oil and vitamins. He basically told me Liberty's EEG was abnormal in the occipital lobe and that he didn't know what it means except that he could have a seizure at any time or convulse and die but that I should go have myself a nice day).


Recently, I began Lib on an amino acid supplement Dr. Bock recommended. I could not remember what it was for as he added three new ones from our last follow-up appointment.

The dose was supposed to be one capsule twice a day. The first day I gave him one capsule at 2:00 PM. He fell into a deep sleep at 4:00 and did not wake up again until around midnight! The next day, I gave him one capsule at 4:00. He fell asleep at 6:00 and did not wake up until the next morning on time for school! Now, I can give it to him at 6:00 with guaranteed bedtime at 8:00 and wake-up time around 6:00 in time for school. Perfect.

I just cannot believe it. Other parents who have their children on taurine tell me that it has a calming effect, but it has never, in fact, knocked them out. I began to wonder if this is some missing ingredient that his little body needs.

I called the doctor's office in NY and they said that they, too, had never had a child react like Liberty to taurine. They said to just back it off and start slowly. So, now I can give about a 1/4 of a capsule and it is calming. One half capsule and he goes to bed for the entire night!

Taurine - my DREAM DRUG - mother's sleep-in-a-bottle.

So, I did a little digging around for information on this amino acid. Here is what the literature said:

- that it is one of the oldest treatments given to children with autism.
- that it is a powerful antioxidant.
- that it was given to control tics.
- that it prevents seizures and is given for epilepsy.
- that over 60% of children with autism have a taurine deficiency.

Here is an excerpt from an article on the role of taurine:

-Acts as an antioxidant
-Has anti-inflammatory effects
-Stimulates biosynthesis of lipids that are important in maintaining cell membrane integrity
-Can be neuroprotective by counteracting excessive levels of excitotoxic amino acids such as glutamate, and deficiencies can result in impairments in energy metabolism.

Sounds pretty good, huh?

I can't tell you how many people have asked me if I've taken it myself yet. Apparently, there are a lot of people with insomnia!

If anyone has had any experience with taurine, please comment. I could not find anything adverse about it anywhere.

Mother's sleep-in-a-bottle. Yes indeed.

What might have been

Autism's Cause Du Jour

Today, the cause of autism is....pet shampoo.

Doesn't it feel like so much effort is being put into taking the emphasis off of vaccines?

Another Glimpse into Autism Issues in the UK

A video from a new blogger friend in the UK regarding Andrew Wakefield's trial. Though it is rather dramatic, it's worth watching because it has a lot of commentary, especially from Jim Moody, Andy's lawyer.

Point of Attraction

You will notice that those who speak most of prosperity, have it. Those who speak most of health, have it. Those who speak most of sickness, have it. Those who speak most of poverty, have it. It is Law. It can be no other way... The way you feel is your point of attraction, and so, the Law of Attraction is most understood when you see yourself as a magnet getting more and more of the way you feel. When you feel lonely, you attract more loneliness. When you feel poor, you attract more poverty. When you feel sick, you attract more sickness. When you feel unhappy, you attract more unhappiness. When you feel healthy and vital and alive and prosperous—you attract more of all of those things.

Excerpted from a workshop in “The Law of Attraction, The Basics of the Teachings of Abraham”

Valtrex Shmaltrex

This past Sunday, Liberty had a severe reaction to the Valtrex we started him on as antiviral therapy. We initiated this "therapy" in relation to a theory that autism may be part of a complex manifestation of a viral + fungal/bacterial + heavy metals infection. And, some children with autism are thought to be "viral kids," according to their lab results and history.

Liberty was started on an antifungal back in January for the purpose of preparing for the antiviral which can make a yeast situation worst, and also to rid him of his cradle cap. So far the antifungal has worked very well for Liberty. As you may recall, the yeast die-off he experienced when we first began this treatment was horrendous. He has now been on the antifungal for over four months with liver function tests checked monthly.

I began the Valtrex in a tiny dose, same as the antifungal. I never go by the dose prescribed since I know that Liberty is more sensitive to these medications. He had at least a week on the Valtrex slowly titrating the dose up to 1/2 a teaspoon twice a day. When we reached 3/4 teaspoon on Sunday, the child almost came unglued. He cried, wailed, and I am pretty sure he was hallucinating. He was batting at the air. He had a few times where he was okay, even going outside to play, but then would go right back into a huge screaming fit. When one episode went on for over 30 minutes non-stop, I was terrified. I called the office in New York but never got a return call. I should have known to give Liberty some charcoal to absorb the medication, but I was too busy calming him down for my brain to even register this.

When I looked up die-off reactions from Valtrex, all of the descriptions were of "emotional instability." A family member recently had a bout of shingles and took the drug, and told me it made her feel odd and hyped her up. We had also given Liberty his methy B-12 shot that day so that might have sent him over the top.

At any rate, it was pretty bad. He had been up crying off and on all weekend with what I thought was postnasal drip, but in hindsight, it could have been the Valtrex all along.

When you start looking around on Google for information, you find all sorts of things. There are some who say that symptoms are supposed to get worse before they get better and to hang in there for something like 50 days. Well, maybe if my son was just irritable or stimmy I could do that. Instead, he was screaming in a rage, hurling himself into my arms, giving me that pleading look. I think he was also dizzy. I can't just sit back and watch him do that for over a month!

It has been three full days since Sunday and he is still emotionally labile and really stimming. Last night I thought I saw his eyes start to roll up, but it never looked like a seizure and he seemed to be okay thereafter. This has prompted me to renew my interest in getting an MRI and another EEG.

Valtrex was $210 but we can say we tried, I guess.

I was not quite sure what Dr. Bock's recommendation would be, but he said to stop the Valtrex completely, and that goes along with the feeling that I have. I feel relief and that, to me, means the right decision was made. I never gave Lib anymore after that episode.

I will say that Liberty began saying more vowels as of yesterday. He is saying "uh-oh." That's pretty big. Twice today he looked me in the eye and said, "mom" very clearly.

Of course there are some folks who think that I am giving up on a therapy to bring Liberty back from wherever he is, or at least give us some speech. I'm not so sure about that. The way I felt Sunday was that putting my child in pain and in danger on an adult drug that has some very serious side-efects was not acceptable. Dr. Bock must think that we need to take a different route, and I have trusted his opinion up to this point. That's what I pay the man for.

A blogger friend reminded me that we hire doctors for their advice, not to do everything they tell us. Thank God for my wonderful support group in the blogisphere. I love you people to death. :)

In the end, I have to go on what my gut is telling me. Truly, you have to feel your way on this path.

Maybe that is another thing Liberty is teaching me. Since he is non-verbal, I have had nothing to guide me EXCEPT my intuition.

Welcome to the Rainforest

Ever since Liberty began his therapeutic listening, it has apparently increased his vocalizations. Lately, it has gotten to the point where he is outright screeching, chirping, howling, yelling, or even whispering. It's starting to get on my last frayed and dangling nerve.

And, forget about it if I answer the phone. There must be some kind of "disturbance in the Force," to borrow a phrase from Star Wars, that, whenever I put my ear to the telephone, he will invariably appear right in front of me (from wherever he has been) and begin these wild and crazy vocalizations. He will climb up in my lap and turn my face toward his, or try and get the phone out of my hand. Pity the poor caller on the other end who usually gets a big "whoop, whoop," bellowed into their ears.

What can I say? It's just starting to get to me.

Sometimes he wakes up in the morning with a happy little screech or yelp that rips me from whatever level of sleep I was able to attain. He is in the other room right now and it sounds like "yipping." I can only hope that this is pre-speech, not just some kind of new stim. I've waited so long for speech.

I found one of my son's old occupational therapy notebooks in which the therapist wrote down that Liberty said four words: "Get down, go out, Mom, and Tigger." That day stands out in my memory. He was two years old. He will be six years old in July.

I just don't get it. Where is the speech? I know his receptive language has increased because he follows commands now. There is something that just won't allow his brain to make that connection he needs. It can get me so down.

Today, for instance, Lib started crying and I could not get him to attempt to show me what was wrong. I took his finger and tried to get him to point to areas of his body. All he did was cry harder and hurl himself into my arms. Eventually, I was so worn out that I was crying, too. We had been up at 2 and 4 AM the night before because the weather turned humid; rain was on its way. It rained hard most of this morning. I think my son got the usual postnasal drip that this part of the Gulf is so famous for. So, I was tired and I know he was tired.

I rocked him until I could rock no more. He is heavy. My bones and muscles ache. My back is about to go out again, I can feel it.

I wearily got up and just collapsed on the bed in the bedroom while he continued to cry in the other room. I just had no more energy. Finally, he came and climbed into bed with me and we napped with our arms wrapped around each other for at least two hours when I awoke to long shadows in the house, the sun going down. Lib continued to nap for another two hours, utterly worn out.

These are the scenarios we constantly cycle through. We mostly have pretty good days. But, when Lib is hurting and cannot communicate with me, that is when I am at my wit's end yet again, and I question everything. I just sit back and watch my mind as all the "trash talk" blows through like tumbleweeds - random thoughts about how it was that damned MMR shot that did this, or I'm angry that they are so proud at school about how well he is communicating but communication stinks at home. I suddenly want to rush to the hospital and get an MRI, maybe it's a brain tumor after all. Maybe I need to change doctors. Maybe I should take him off all supplements, maybe I should do all the supplements I have been letting slip through the cracks....on and on it goes. I cannot stop those thoughts but I can step back from them now and just witness them. It does help. A little.

I guess vocalizing is in many ways better than silence. I see my son with those bright and shiny eyes trying his best. Sometimes I have imitated his sounds to see what he would do, and usually he stops and looks at me. I'm trying meet him where he is. Mostly I dream about not being able to find him, my mind's way I guess of burning off fears.

You know, most of the biomed treatments we have encountered all say that behaviors usually get worse before they get better. I'm sure that is true sometimes, but is it always true? My occupational therapist I have now who guides Liberty's therapeutic listening told me that she thinks that Lib is just transitioning, and to try and be patient and watch him for a month and see if things change. Our speech therapist said most of this is sensory integration problems. Right now he is running his hands in front of his face, getting eye level with countertops and rocking back and forth, measuring distance (it looks like to me) by walking from one end of the room to the other , and now these persistent sounds that really do imitate gibbons in the rainforest. Ever hear one of those? It's a wop, wop, wop sound.

Oh, yes, and the clapping. The clap-clap-clapping.

Can anyone doubt why I cherish my alone time...the peace of silent meditation? This is that core that I have to cultivate if I am to going to be able to withstand this journey with my son.

An Article Worth Reprinting Here...

OLMSTED ON AUTISM: CDC triggers measles outbreak

By DAN OLMSTED

I'm starting to think we should rename the CDC the Centers for Disease Contagion. You've all seen the news that there are suddenly more measles cases in the United States and the CDC is blaming it in part on the increasing reluctance of parents to vaccinate their kids.But it's the CDC's fault, and no other. Getting the "measles shot" means getting the MMR, and the MMR is "the autism shot" in the minds of many, many parents.

That's what Jenny McCarthy called it just before her doctor assured her it was not, just before he gave it to Evan, just before Evan regressed into autism. That's the shot they're trying to crucify Andy Wakefield for warning about -- for saying way back in 1998 that it might be best to split up the components while we figure this out. (That was several hundred thousand autism cases ago. Good luck trying to get just a measles shot.) The MMR is the shot Merck combined with chickenpox vaccine and ended up giving kids twice the number of fever-induced seizures. And the MMR's the shot the CDC still recommends at 12 months on the same office visit as the chickenpox shot. They see nothing, they learn nothing, and then they blame it all on parents who do.

Instead of acknowledging or connecting any of this, the media call in their experts -- doctors all, of course -- to remind everyone to look at the nice, color-coded,, easy to understand immunization schedule the CDC so helpfully posts (Thanks, Dr. Nancy!). That, they suggest, would set everyone's mind at ease and get all our kiddies back on schedule. I doubt it. I think it would scare parents even further to death, if such a thing is technically possible.

Let me tell you one reason why I'm not shy or circumspect about squarely blaming the CDC for this -- because Jon Poling, Hannah's dad, predicted something like this, or much worse, just a few week ago. And he said just what I'm saying. In the Atlanta Journal-Constitution on April 11, he wrote: "The current vaccine schedule, co-sponsored by the CDC and the American Academy of Pediatrics, injures a small but significant minority of children, my daughter unfortunately being one of those victims. Every day, more parents and some pediatricians reject the current vaccine schedule. In an abundance of caution, meaningful reform must be performed urgently to prevent the re-emergence of serious diseases like polio or measles.

"As a neurologist, I have cared for those afflicted with SSPE (a rare but dreaded neurological complication of measles), paralytic polio and tetanus. If these serious vaccine-preventable diseases again become commonplace, the fault will rest solely on the shoulders of public health leaders and policymakers who have failed to heed the writing on the wall (scribbled by my 9-year old daughter)."

Dr, Poling is the real deal, educated at Johns Hopkins, devoted both to his daughter and his patients, tempered by reality. He's mild-mannered. He's mainstream. He's credible. To repeat for emphasis: He says that if a disease like measles emerges again, "the fault will rest solely on the shoulders of public health leaders and policymakers."

That's the CDC. Right now they're triggering a measles outbreak, and that may just be the start of the havoc they're going to cause unless Congress or the (next) president reminds them who's REALLY in control around here.

--Dan Olmsted is Editor of Age of Autism

Thursday Thoughts

The proof is in the Amish. Read about an Amish girl and her autism that developed after a vaccination in an article written by Dan Olmstead over at the Age of Autism here. What will it take for Geberding of the CDC to stop uttering her ridiculous comments about Hannah Poling's autism being an isolated case?
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On a completely different note, Robin has written about her Spring herb garden. I think this is a wonderful thing to do, and it looks like the growing trend now to raise your own herbs and vegetables. There is a unique company I just ran across in our neck of the woods called "Off the Vine." These folks are based out of Atlanta and they deliver fresh, organic fruits and vegetables as they are in season and available on a weekly (or bi-weekly and monthly) basis to anyone in their range. Check them out to see if they ship to your town. I am personally interested in this as it would save me gas and time, and I would not have to scour the earth anymore for the freshest organic stuff. I think that we would probably even eat better or smarter. With this service, you get different produce as it is available and in season. They give you a list for the week's shipment. I think this could be kind of exciting, as you would plan your meals around what is in season and eat more fresh foods. If you are fortunate enough to live in an area where you have local access to fresh, organic produce then this service probably would not seem that enticing.

I do think that people are going to begin to come together as communities, raising and sharing food, conserving gas and resources, and recycling more. I have stopped the madness of buying water bottles to put in my son's lunch. Not only does the plastic pollute the environment, but now there is a concern that a chemical used in plastics called bisphenol-A (BPA) leaches into the water. Not good for our kids. Not good for anybody.

Therefore, I bought a lunch box-sized, stainless steel water bottle from Klean Kanteen for Liberty and LOVE IT. I think I will get a water bottle for myself, as well. We have a filter on our kitchen tap. Now, I want to get a filter for the shower and tub. I just want to become more conscious of what we are doing on a daily basis. I think we all need to do this, our future and our children's future depend on it.

Today is my beautiful, talented, adorable and wonderful niece, Jennifer's 34th birthday. She was born when I was 14 going on 15 and we have always had a very strong bond. Now, Jenn and my son Liberty have that same kind of bond. When she comes to our house, Liberty won't let her out of his sight and clings to her like glue! Think there's some kind of spiritual thing going on there? I think so.

Happy Birthday, Jenn. Happy May Day, and Happy Spring everyone.