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.