Of haircuts and Mozart

Lib had his hair cut today and did not cry! He even stood up and ate some of my homemade "bunny" crackers I brought along while Robert, our new God of Hairdressing, used the razor on the back of his neck! Robert's place: Imagine walking in to the smell of a clove type candle burning "Mediterranean something or other" Robert says. Small fountains, stained glass, so much sensory stuff, the sound of soft new age type music. Robert himself looking like a young Captain Kangaroo in his chef's royal blue double button down shirt, a Master Gardner and all around cool person.

Back at home Lib loving The Mozart Effect, Relax, Daydream and Draw. See the calming effects.

A pretty good day, I'd say.

"And to answer your question, yes...

the brain is plastic, and the brain can recover. You should have hope for your son."

With that statement, our new DAN/neurologist gave me a prescription for hope. The exam room suddenly came into sharp focus, changing from dull gray to vibrant color. I could feel the blood flowing through my veins. I took a deep breath.

Dr. Soto is a likable, poised and kind man who educated me about the brain and about how it functions in relation to the gut, things I thought I already knew from all of my own reading and "University of Google" degree, (to paraphrase Jenny McCarthy,) but I came away with a new understanding of what probably happened in the past and what is now happening with my son. Dr. Soto distilled it down for me into a whole new perspective. I am not so overwhelmed by it anymore. I think I may finally get it.

Dr. Soto said that doctors love to categorize and label things but for me to throw out the label of autism, that it doesn't mean anything useful. He said it's just a catch phrase for a syndrome of inflammation, which is brought on or exacerbated by all of the things we folks in the world of "biomed" gab on about endlessly: metals, antibiotics, yeast, bacteria, etc.

He told me what I needed right now is a structure from which to work. I guess I appeared to be all over the place with it so to speak and I guess that is what I have been feeling. Like we are just stumbling around and trying to intuit things and not checking things out with labs. And we have a doctor who is basically not guiding us. I spend most of my time doing my own research and talking every day to my biomed email pals. We moms (and occasionally dads, aunts, grandmothers) who are so busy but somehow manage to type out our questions in emails to each other as we are getting dressed, or dashing out the door, or on the phone, or feeding the dog. Things like, "hey, what do you know about choline?" or, "aren't you supposed to take the P5P with the Vitamin C in order for it to be absorbed better?" or "my son just had scrambled eggs and all of his lights just went on now what is in the eggs?!!"

This is a typical day. We are always brainstorming, researching, and supporting each other and so I thank God for the information highway, okay?

BUT, for the amount of money we fork over to our DAN docs, we really should be getting more information out of them. I know they are busy, but these are our precious children and they have lots of things happen in between appointments. Sometimes it takes forever for our doctors to get back to us, if ever.

Dr. Soto examined Lib and observed his behavior while we talked. He told me he doesn't need a new EEG or an MRI because Lib has the signs of "classic inflammation," and that an MRI would probably be normal. He does want to see a copy of that EEG I managed to get when Lib was around 4 years old to look at it himself, but he is pretty sure of what he is seeing with Lib. This man was the former director of the stroke center at the local hospital here. I checked out his credentials, believe me. It is sad to say but I am wary of doctors who have recently become DAN certified because there are a few who just want the money and they really don't have the experience to treat children with autism. I don't get that sense with this guy. I think he knows what he's doing. And, he's a BRAIN man. I find that comforting right now.

I told him about the absence seizures when Lib's yogurt had been increased last summer, and how they disappeared when I stopped the dairy. He said I just basically showed him an EEG. He said casein and gluten both cause inflammation and that is why it is recommended for children with a diagnosis of autism to remove these proteins from the diet. He also said, and take note here, to make sure Lib is not getting any MSG or any of the many names it goes by. Luckily, we don't eat any highly processed food, however, his beloved pretzels we actually put him on to get him off of something else contain YEAST EXTRACT. In other words, MSG.

So, now I have to wean him from that and find some other substitute. It seems never ending for me.

MSG causes inflammation. If you look up autoimmune diseases in general you will find at their base, inflammation of the entire body.

I remember posting about this subject before. In 2006, I listened to a DAN doctor speak, Julie Buckley of Jacksonville, Florida. She began her talk by saying, "In 10 years, autism will be known as the disease of inflammation." Even though she went on to describe the chemical chain reactions that produce what we label in the end as simply "autism" (and the chart could fill a gymnasium it's so complicated), that is the one idea that stuck with me from that evening.

But I forget about it all of the time, and that is because I have had a doctor who really has not explained much to me because he is too busy and too rushed and he has not seen Lib in over a year and a half. That is why I knew I had to go local and was so excited to find the new doc who happens to be a neurologist too. Again, in my own backyard.

When I told him about the DAN doc we have been seeing for awhile but felt the need to switch, he said he has seen this over and over, that parents start out of the gate okay, and then as time goes on they get lost. He has patients that have come to him from our doctor in New York, saying the same thing...the doctor might know his stuff, but he is too busy, too famous, the office is in too big of a mess, calls are not returned in a timely manner, or that they have to rely on emails alone from their doctor's office to navigate through the process.

How about my DAN doc in NY constantly calling Liberty "she" when there is a picture of all of us on the front of the file? At least Dr. Soto will remember Lib is A BOY .

Emails and phone calls - that is all some of us have to rely on - just a voice to guide us through the woods. And the blogging community which is comprised mostly of parents trying to figure it out. When you think about it, it's ridiculous.

Dr. Soto said, "You might feel like you are starting all over again, but we have to know where we stand right now. Is there Candida or not? Bacteria? Vitamin A, D, thyroid function, etc. When was the last time there was a comprehensive stool sample - oh, never? Okay. How about an OAT test (organic acids)...oh, never?" No OAT test but Lib was placed on Diflucan...for months in preparation for Valtrex. Let's don't go there.

Also, I've been giving Lib curcumin on occasion, something I have posted about previously. Curcumin is basically turmeric. Dr. Soto said it can be very effective at reducing inflammation but needs to be taken appropriately, that is, three times a day at 500 mg and it needs to be given in a fatty base like cod liver oil to make it effective. That was news to me.

I must have looked overwhelmed at one point, and he said, "Stay in the present moment, Kathi, and all will work out." I like that in a neurologist, don't you? Very Eckert Tolle. I need to be reminded.

I asked Dr. Soto about Lib's inconsistent behavior. That some times he is present and the eye contact is wonderful. We are even starting to get words to pop out on occasion. For instance, today at school, he said, "Goldfish." (The teachers were trying to get another child to ask for his goldfish crackers and Libby apparently helped). I said to the doctor, "It's like he's caught in a loop, like things just are not connecting properly." He said, "That's it! That is it exactly." And, apparently that is what happens when you have inflammation spread throughout your body and your brain. And, that's the story, but it's only the beginning apparently.

It's still hard for me to comprehend this completely. That word I've spewed 50 times now, inflammation...to me connotes a picture of something you take ibuprofen for and you're done. But that's not it.

Well, Dr. Soto has a PLAN for us. Labs first, stool sample, urine sample, return to office.

Walk on from there.

Limbo

I have not written much since I feel like I am just keeping my head above water. Liberty has had constant puzzling symptoms which I am sure are due to the side-effects of DMSA chelation. We have one more round to give next weekend and then we will do his first battery of testing to see what he has spilled.

Liberty is doing well, overall, I think. But the summer is looming. The country's economic situation has spread to the schools. I learned today that 200 positions are being cut, that means his classes next year will be enormous and aides for the teachers will be reduced. Our children need small, manageable classes, so I am unsure what will happen. It is now March, so IEPs are on the horizon, the summer must be planned, and we are waiting on information...what services are covered by insurance and what are not, which therapists are available this summer, do we do a listening program or ditch it? Horseback program? Swimming? ABA? Summer camp? No word on the camp yet.

I think most of us won't know what will happen with the school situation until late in the summer when the funds from Obama for special ed will come in.

I will be posting more frequently I am sure in the coming weeks. We are heading to a new DAN doctor who happens to be a neurologist. How fantastic is that? I am hoping to get some more answers, find out where we are in this crazy maze. I feel we are in a new phase. My son is getting older and though he has progressed in many ways, still there is no speech and he will be seven years old in July. I never thought we would be here, but here we are.

So, I need pictures of his brain. I need to know once and for all what it is exactly we are dealing with. You know "these days" diagnosis takes place in an entirely different way. When Lib was diagnosed (over 4 years ago), all they did was parade my 23 month old boy around a room, ask him to do certain things, then handed me social security disability papers and sent us on our tearful way. Now, I have heard they would not dare diagnose a child without a thorough neurological examination which includes MRI, EEG, consult and a massive battery of labs. We never had any of it. And, not one person along our way has EVER suggested it.

I have tried to get EEGs here but the only office in town is just horrible. Parents tell tearful stories of the way they are treated. On our last visit, they gave my boy Benadryl without asking me and he went bonkers for 2 days and we STILL got no EEG. The first visit, he had an abnormal pattern only in his occipital lobe and the doctor here (if you can call him that) was very nasty to me because he found out I was one of those biomed moms. In a nutshell, the bastard told me that Lib could have a seizure and die at any time, but have a nice day. I should have reported him right then and there, but I was too wounded like so many parents are. (He went on to say the gluten free, casein free diets are a bunch of crap).

So, when I trooped back to see a new associate at the-only-game-in-town horrible clinic, he told me it was nothing to worry about! That children had abnormalities in the occipital lobe all of the time. About a month after that, I saw Lib have absence type seizures, took him back and we had the whole Benadryl experience with no EEG done.

So we are still left hanging in the breeze.

I am praying we get some answers and that this new doctor will help us find them. I have heard good things about him. I am cautiously optimistic - if there is such a thing.

Back later. Film at 11 as they say.

It takes a village

Liberty had his six month dental appointment yesterday for a check and a cleaning. I remember how much I hated going to the dentist when I was a kid but, though it may sound odd, I always look forward to going to Liberty's dentist.

First of all, he is a pediatric dentist. Second of all, he has family members with children with autism, either Asperger's or severe autism or brain injury. He is always warm and cordial to me, and asks questions that let me know that he is "in the know" about autism. He asks me how I'm doing and he really means it. Kids love the atmosphere (adults, too). The walls are filled with over-sized paintings of Dr. Seuss characters. In the center of the waiting room, there is a long table with a Lego base on it. All the kids line up around the table and stack and unstack buckets of Legos in various shapes and sizes.

The staff is unbelievably kind. It takes a "team" to clean Lib's teeth. It's scary for any child to have metal instruments placed in their mouths, not to mention the discomfort of the vibrating mechanical tool used to polish teeth. And, they used a little instrument to keep his mouth open yesterday. He cried, but he was okay. Four voices were soothing him in unison. I have to kind of throw my body over his legs. He kicks his shoes off. His strength surprises me every time. I'm always exhausted afterward, like I've been roping cattle. Even so, this time, Lib was not hysterical or anything, just annoyed and a little frightened.

One of the staff that was helping us hold Lib on the dentist's table told me that no other dentist in town will see any child who cannot lie down and be still! That means, all of the children with special needs come here to this place. It breaks my heart.

I was reminded of how much help I need from others to raise my son. The dentist, the doctor, the hair cutter, the teachers, the therapists, the neighbors, a decent understanding phlebotomist at the lab, et cetera.

The village of Those Who Understand. The Compassionate. The Competent.

When the cleaning by the hygienist was over, the dentist came in to examine Lib's teeth. They are growing in straight, taking after his father thank God, and no cavities. According to the dentist, "Perfect." A word that is music to my ears.

After they were done, Lib got up off the table, high-fived the dentist, and, smiling, ran out into the waiting room and sat down beside the other children at the table to play. No grabbing Legos from other children, no shoving, no yelling.

Lib is coming along in his own time, but Dr. Stu Bonnin made this whole experience not only possible but more than bearable. I absolutely love him, and, he remains, at the top of my gratitude list.

What happened to my Joaquin??

Don't let the hogs in

So, I have this dream, that I am watching waves breaking on the ocean and when each wave crests, I see the opaque outline of a great white shark. I am on the shore, not in the water. But I see it. I know that it is there. With each wave that breaks. The water is this translucent pale blue green. It's a sunny day. Crystal clear. And the shark is there.

Okay, so maybe I've watched Jaws too many times, but I know what this represents to me on a gut soul level.

Emotionally, I have really been pulled through a knothole.

My father had to be moved from the nursing home/rehab center we first put him in because of the negligent lack of care. It was very depressing. I watched my father's spirit sag there and it scared me to death. Thank God we were able to remove him and find another place which really has been a lifesaver. He likes it there. He has a roommate who also flew during WWII who is pleasant and helpful. He has hope now that he can and will get better. He is in physical therapy twice a day, building strength. He is learning to walk with a walker. They are aiming for retraining him to live by himself at home and be safe. But, he has other problems to contend with, that of his feet and legs swelling all of the time. On the one hand he needs to get up and walk, and on the other hand, he has to have his feet elevated all of the time. And there are just other issues that go with growing older. The chemistry has to be constantly tested and balanced. I wish it were as easy as walking right out of there and back to his old routine.

I've been either at the hospital or rehab center since the end of January and Dad's always on my mind. He said to me today, "Oh, to get up in the morning and go start my coffee, how I miss that simple act." It will be three weeks on Sunday since he has been home.

Then my precious older sister whom I adore had to take a job in another state. She has been packing all week, and as of today, everything is in storage, her car is packed to the hilt, and she is staying with my other sister here, so she can take off bright and early Saturday morning. It will be very hard for me to drive by her empty apartment. I am not looking forward to saying good-bye again.

Too hard. How I will miss her.

Then, there's my sweet boy. Always, the questions in my mind, making mental note of this and that to ask the doctor, staying on top of his supplement schedule, his special food that has to be shopped for and prepared. You know I can keep the ball rolling, I've gotten good at juggling. But I'm really tired and it isn't resolved with one good night's sleep.

I think I am just emotionally spent.

Lib is not communicating well, either. It's like he forgot all of his signs. My fears are cropping up like weeds. It's so important for me to keep my thoughts in check. A couple of negative thoughts and it starts the ball rolling to mushroom into a such a depressed state I can hardly do anything. And usually, at it's root is the fact that I'm very tired.

The other day when I walked around the neighborhood? I yawned the whole way. I think that's a sign.

And when I'm tired I am vulnerable to all of my fears. You know, the "what if's?" And, then I even have some flashbacks of my father when he came out of surgery, and he was in pain. I've never seen him in that kind of pain before in my life, like they just brought him in from the battlefield.

Emotionally vulnerable. To all kinds of fears. Got it.

It's no wonder my Great White shows up, the warning symbol from my wonderful guidance system: "Be alert. Don't open the gate and let the hogs run wild through your carefully cultivated garden!"

Extreme self care, somehow I have to get there. And, I guess it has to start with sleep and doing less for awhile. And appreciating more.

I'm Back

I feel like I've been on another planet. Well, I have. Planet Hospital. Thank God my father was released from there yesterday to a nursing home/rehabilitation center. He was on his back for so long he has to re-learn how to get his muscles moving to be able to walk. I told him he is one step closer to home. This place is almost across the street from his condo so he really is almost home.

He came through both operations, a pacemaker and very large hernia operation with flying colors. I don't think I could have done as well, really. For 91 years old, he's an amazing man. And the nurses just loved him.

Stay away from hospitals anyway you can! 's all I'm sayin! The longer you stay, the more you don't know "who's on first," and the greater your risk of getting sicker. I don't know how we will ever change things, but somehow we have to. The patient seems to fall through the cracks of the system. And when they are done with you, boy are they done. They practically throw you out!

Meanwhile, back at the ranch, Liberty has been doing well. He's past his second round of chelation. He has made leaps and bounds in his ability to do things for himself. He has really made huge strides in going to the potty on his own now. His constipation that was the rule rather than the exception for years is now a thing of the past. He is eating well and he loves his Glutino blueberry bars that have lots and lots of fiber in them. He is understanding more that is said to him without gesture, and he initiates signs and activities at school. His report card came home and he has met so many of his goals that I think by the end of the year, he will have met them all. This is all wonderful and I am so grateful. He is light years from where he was last year.

That being said, speech still eludes us. I do hear more and more effort at trying to speak, though. Perhaps the chelation is helping with this. We will do tests on the fourth round to see what he is actually spilling and go from there. I see progress, though, and that is the main thing. I dream of my little boy being able to talk to his granddad and I know my father does, too.

I hope soon my father can be back at his place, listening to his classical music turned up full blast on his Bose, sipping a glass of wine, watching his birds on the feeders, reading, and sending out his daily email posting to our "tribal council" which consists of my extended family and two women who are the daughters of my father's gunner on his airplane he flew during WWII. My dad is otherwise known as "Talking Bear." My son is "Little Bear." Dad, in fact, assigned us all tribal names. He is a character and loved by everyone.

So, my mind is on rehab for my dad and therapy for my son. I am looking into the horseback riding therapy for the Spring since my son had such a good reaction to a therapy horse back in the Fall. I'm looking at a new neurologist in town who is now a DAN-certified practitioner. We have two in our tiny little town now which is nothing short of amazing.

And, at the top of my list for 2009: Me. Yeah, me. I decided that I have to have time to do something for myself, but more than that, I have to pencil myself in somewhere. You hear women talk about this all of the time, we put ourselves last. But with a child with special needs, you really don't think about yourself for so long. The effects for me are striking now though, the lack of sleep for years, the lack of self care like hair appointments, keeping up my nails, exercise, eating right...the whole deal. I have to get that back for me. I've done a pretty good job, I think, considering all we have been through with the Libster.

Now, it's time for me to do a good job with myself. So, today, I'm donning my old walking shoes, bundling up, and going for my 1.5 mile trip around the neighborhood. And, who knows, maybe when I get back I'll even take a vitamin!

Mercury in High Fructose Corn Syrup

My sister sent me the article below as an FYI. I read the Huffington Post article in the link and particualrly noted the comments from an autism mom. Just another reason to eat as naturally as possible, but let's face it...if it's soy that penetrated our food supply (Crisco is now all soy), then it's corn and the high fructose corn syrup is the worst, apparently.


-----------------

FDA KNEW ABOUT MERCURY IN CORN SYRUP -- AND KEPT SILENT

The Food and Drug Administration has known for years that high fructose corn syrup is often contaminated with toxic mercury -- but did not inform or warn the public.

"There is no established safe dose for elemental mercury, the type discovered in corn syrup," wrote Michael Hawthorne, who had the story in the Chicago Tribune of January 27, 2009. "But the U.S. Environmental Protection Agency says an average-sized woman should limit her exposure to 5.5 micrograms a day of methylmercury, the kind found in fish. If that same woman regularly ate corn syrup contaminated at the highest level detected in the study -- 0.57
micrograms per gram -- the researchers estimated that she could end up consuming an amount of mercury that is five times higher than the EPA's safe dose."

But the FDA had the information as early as 2005, when one of its scientists co-authored a study finding the mercury in corn syrup. Despite this, the FDA allowed the corn industry to go forward with a campaign advertising corn syrup as "natural." That part of the story came out in the Huffington Post column of Leslie Hatfield Jan. 27.

The Corn Refiners Association is currently running a TV ad campaign
attempting to deny negative statements about corn syrup

-- "Mercury in Corn Syrup?" Chicago Tribune, January 27, 2009, by
Michael Hawthorne .

-- "Our Melamine: There's Mercury in High Fructose Corn Syrup, and the
FDA Has Known for Years," Huffington Post, January 27, 2009, by Leslie
Hatfield .

Hugs for my father

My beloved 91-year-old father is in the hospital, I am again not posting much as you can understand. There are two operations he had to undergo emergently; one a pacemaker of which he came through with flying colors, and second will be a hernia operation. I will post back here after we get past the second operation.

God, I forgot how much I hate hospitals and I transcribe this stuff all day long! Our medical system is clearly failing. The right hand just seems to never know what the left hand is doing. When you are in the hospital, there should be at least one person with you at all times to keep abreast of what is going on. Otherwise, the family is left to piece together information. It's ridiculous, but that's our currently flawed system. How to change the paradigm...perhaps it is emerging. Until then, we are pretty much divided into various body parts with specialists who attend to each part. It's the bringing together of it all that's missing.

Then you have those golden gems, those docs and nurses who suddenly come in and you think, Thank God! A person who has not lost their compassion, their heart. And you praise them all day long and never forget their names.

back later

Milestones and Mayhem

Here he is, my toothless boy. Lib lost both top teeth this past weekend. Also, this weekend, was our very first round of chelation (applause). It went great. I did not think I would see much of a difference yet, but something has changed. He's vocalizing more, he's more alert, he is following commands better, and he's suddenly very loud. He seems to be very happy, too as seen here:
I had a feeling he was in a new phase. I was sitting at my computer tonight transcribing medical dictation, and thinking that if I see him get out the Nemo video, that will tell me he is going through another growth spurt. That seems to be the signal. But, he hasn't wanted to watch Nemo in a long time, and if I got the video out myself, he would put it back on the shelf.

It really was just a fleeting thought (intuition?) when, I kid you not, suddenly, I heard my husband asking Lib if he wanted to watch Nemo. I thought it was my husband's idea. I turned around and there was Liberty, Nemo DVD in hand.

How cool is that?!

Stay tuned. Oh--he's going to the potty by himself. All I have to do is tell him to go and he does it. He also ate homemade chicken nuggets and tater tots at school. I'm so proud.

At Last!

ABC News: Exclusive: Jeremy Piven Defends Play Departure Due to Mercury Poisoning

ABC News: Exclusive: Jeremy Piven Defends Play Departure Due to Mercury Poisoning

Posted using ShareThis

Liberty's Favorite Video

taking a much needed timeout - back soon

painting by Maxfield Parrish "Aquamarine"

A really good day

I got a glowing report on Lib's first day back at school. This is a far cry from where we were last year when the teacher reported that he forgot his routine and had regressed over the 2-week holiday. This time, his teacher said he did mimicking and matching, made all kinds of new vocalizations, ate all of his food including all of those gluten free/casein free cereal bars he would never touch, and went to the potty all by himself. The first day back!

While Lib was at school, I drove to Target and bought him this cool stainless steel sippy cup. It is made by Thermos and called a "Foogoo." The lid flips up and there is a straw inside. He loves it. No more crappy plastic cups full of God-knows-what kinds of chemicals.

I had an appointment with Dr. Bock in the afternoon. When I described Lib's progress interspersed with odd behavior, he said, "Remember, recovery is never a straight line." Well, I will hang onto that thought.

We decided on a plan of DMSA to begin heavy metal detoxification and made sure we had the necessary supplements in place. Since Lib's bowels are now working properly on their own, we can forge ahead. And, he's basically sugar-free. If you remember our battle with yeast this time last year, you will understand how much I don't want to have any yeast problems when we chelate. Sheesh! That was a rough experience for us and even rougher on my poor child. I still remember his blackened teeth from the charcoal I had to give him.

So, we are finally ready to do this thing, though experience has taught me that we might have to do make some adjustments in dosing along the way. Dr. Bock agreed with me to start out very slowly with Lib. If I have learned anything, it is to first test the waters with small amounts of supplements or meds. You just cannot go by a one-size-fits-all chart for each child.

Wish us luck as we walk down yet another road.

Zippity Doo Dah, It's Back to School at Last

So, Liberty went skipping off to school today. He could barely get out of bed since we have gotten up whenever we wanted to for two weeks straight. But, once I showed him his backpack and said, "Hurry up, it's time for school," he got so excited, he could not get his clothes on fast enough.

Lots of new things have occured during these last few days before school started:

1) I say bye-bye to him and he waves.
2) I can say his name and he waves.
3) I can wave at him and he waves back.
4) He is looking in a mirror. Does that seem strange? He never did this before. He will hold up his toys and watch himself and his actions now.
5) He is going to the potty BY HIMSELF more often now. I can just say, "Liberty, go to the potty," and he does. He does get distracted along the way, but he still will get up and go.
6) He stopped eating bacon. Just like that. Done. Do you realize how much money this saves us? Bacon is almost $5 a pack. (No hormones, no antibiotics, etc.)
7) He ate a new food yesterday: Chicken cacciatore. This is huge. I did not have to grind it up. Doubly huge.
8) He did reciprocal play by tickling his father yesterday.
8) I asked, "Do you want a cracker or a chip?" He never answers usually. He said, "Cackuh." Be still my beating heart.

Now, I wait with bated breath for the teacher's note home. It will either be amazing or amazingly awful.

In the meantime, hear that?

Silence. Aaaaaahhhhhh. My steaming cup of coffee. Birds outside my window. Nowhere to rush to. Toys to clean up but who cares.

Peace and quiet. I so deserve this!

HAPPY NEW YEAR and Good Luck with Your Resolutions!

Thoughts on the Day After

A few days after some mild chelation of lead (hopefully), Liberty gets up today after a nap, walks into the kitchen and says, "Eat."

Smiling, I think, are my dreams coming true or am I dreaming?

I am dazed and confused in the aftermath of Christmas, after all of the hustle and bustle and running around and checking off lists and thinking too much. We are lazing around the house, eating a little of this and that of the leftovers, punctuated by too much fudge, watching mindless TV shows and not complaining; our usual routine way off, not caring when we snooze and when we get up.

It's bliss, this lounging. I'm not used to it. Liberty was completely into Christmas, so hyper he could not sleep, wanted to do nothing but sit around the tree with his new stuff and talk to himself in the usual Liberty chatter we are used to now. He cried when the family left, so much so he would not get out of my sister's car. He waved bye-bye crying. This used to be the kid who didn't care or at least did not notice who came and went.

This is big stuff. Liberty is coming back to us. Slowly, he is changing.

We are perched at the edge of a new year drifting in the ocean of potential realities, rich with possibilities and hope.

A time for dreaming.

Merry Christmas from the Gulf Coast

Photo by Susan Feathers

Thanks Pip and Pop

Liberty has really taken an interest in the Disney Channel's Bear in the Big Blue House. It's unfortunate that it was taken off the air. But, we have a DVD of Bear with the theme of making music. There is an episode where the characters (Jim Henson muppets), Pip and Pop, "two rockin' otters" use pots and pans as musical instruments. The other night Liberty was watching and he ran past me into the kitchen. I watched him run past me again carrying a bunch of pot lids! It was so precious. He is finally making connections.

I have gotten nothing but glowing reports about his behavior and participation in class for weeks now. He even did well on the last break, as far as getting right back into the classroom structure after Thanksgiving. This time, we have two weeks off instead of one. I hope I can keep him busy and engaged during that time, and keep from losing my mind at the same time.

At school, where the structure is rigid, he eats almost everything I send to school and participates in games and initiates activities. (He got the mats out for circle time for the teacher and signed that is what he wanted!) These are all things he would not do last year at all.

But, when he comes home, he will not do a thing for me. He just wants to "hang out" and play with the 5,000 crayons and Mister Potato Head parts he places in a huge pile in his room. Even when I have tried to structure him like school, he resists. I used to feel bad about it, like he did not like being home, or he is not having as much fun at home like he does at school.

But, then I thought about it. His behavior makes sense. If you had ABA all day from 8:00 to 2:30, wouldn't you want to come home, put on comfortable clothes and do nothing but hang out?

Along the lines of cheering myself up...

I watch Elf every year now, specifically to hear Zooey Deschanel sing this song:




and this is probably my favorite scene, don't you love the music??:

Smile, Smile, Smile

I got a real lift from my friend Michelle's blog this morning. You must click over and watch a 16 minute video that will really lift your spirits. She is just one of those light-filled people I am so glad to know.

I especially loved this video because according to Abraham, the way to improve any situation is to find things to appreciate. As you focus your attention on appreciation, you begin to feel better. And when you feel good, things in your life get better. Abraham would call this coming into vibrational alignment with who you really are.

I have thought a lot about this lately. With the economy such as it is, it can be very easy to get down in the dumps; especially when you watch TV and allow the talking heads to report it over and over again. The more you talk about how bad a situation is, the more you beat the drum of something you don't want in your experience. This is a habit of mind learned in our society. We call it "facing reality." What most people don't understand is that talking about what you don't want over and over again, just produces more of the same. It keeps you stuck.

But, the moment you begin to focus on what is going right in your life, instead of what is going wrong, you begin to bring your outlook up a notch. It's like getting yourself a step stool so you can see a little higher, a little further, and broaden your ability to see beyond present circumstances, which are only temporary anyway. Then, the further you can see, the more you influence your ability to allow more possibilities and solutions to flow to you.

Each day, I have started my morning by listing what is going right in my life instead of focusing my energy on all that appears to be going wrong. It's amazing how just a small adjustment each morning can impact my day, my mood, my life. It helps me to be able to find joy in my day, in spite of my present circumstances. And that is the trick, isn't it?

I have never forgotten what the philosopher Kahlil Gibran, wrote in The Prophet: "You shall be free indeed when your days are not without a care nor your nights without a want and a grief, but rather when these things girdle your life and yet you rise above them naked and unbound."

I can say this with confidence after 49 years on the planet learning the same lessons over and over again: When you seek to find joy first, no matter the present circumstance, you begin to feel better. When you feel better, you begin to attract better-feeling circumstances into your life.

It's the Law of Attraction in action.

So, if you can take about 20 minutes out of your day, do yourself a favor and go watch the video on Michelle's blog today. I guarantee you will be smiling the rest of your day! :)

Casein, Seizures and Taurine

I wrote this summer that I was seeing odd behavior in my son, something that I thought could be brain blips, something seizure-like. We took Liberty to a neurologist and they botched the entire procedure because they gave him Benadryl without asking me. These people just assume that Benadryl works for all children and makes then sleepy. A pharmacist told me once that Benadryl has a paradoxical effect in many children and can make them bounce off the walls.

Anyway, I had Liberty in summer camp at the time, and had been letting him have yogurt. They liked him manding for yogurt and began to give him two cups a day. That is when I started seeing the behavior. When I stopped the yogurt, the behavior ceased.

I told Dr. Bock this at our last appointment and he thought it was very significant; in fact he was rather stunned.

I looked up epilepsy and dairy products, and there is a lot of information about it. One of the treatments for epilepsy is a gluten free, casein free diet. Did you know that?

Below is a clip I found on another blog, Schuyler's Monster, that shows absence seizures. Can you spot them? The little girl has four of them. She will stop, look up, and there is a little bit of swallowing or mouth movement. That is exactly what my son did this summer. He would get very sleepy afterward, too. I dreamed around that time of Lib having these God-awful seizures and convulsions so that was confirmation for me that I was seeing actual seizures. These seizures, though not really harmful in themselves, do need to be controlled because they can lead to bigger seizures. Absence seizures are called petit mal seizures and the more overt seizures are grand mal seizures or the type we usually think of as seizures. As you can see, if you did not know what you were looking for, they are easy to miss.

I started Liberty on the amino acid taurine which has been used for prevention of seizures for a very long time and is a common supplement for the biomedical treatment of autism. I believe it helps absorb some other nutrients and is typically low in children with autism. It won't stop a seizure when one is occurring, but does help prevent them. So far, we have had no more of that type of behavior and have avoided medication.

Prayers

Woke this morning to a very loud noise. I was sleepy and stumbling toward the coffee pot. It crossed my mind briefly that it sounded like a gunshot. Then I thought it was just the highway in the distance, sound travels further in the cold morning air.

Later in the morning, my husband came back in and told me there were police cars and tape and ambulances on the street behind us. A man blew his brains out in his backyard. He was 46 years old. I did not know him, but I did wave to him when I went on my walks around the neighborhood.

I don't know if it was because of a loss of a job or the details. I do know that the media is adding fuel to the fire on an already tense time for so many people by the steady stream of reporting on the economy and loss of jobs (which is real, of course). But we are just bombarded to death with the "bad news." Couple that with Christmas approaching and I assume it's just too much for some people.

So, I light candles for us all today.

My heart goes out to the man and his family and so many others like him who must have been in despair. Just the news that the gunshot I heard took the life of someone at that moment was enough to double me over in tears. My husband and I, too, are experiencing some temporary financial setbacks right now, and he said let's just remind ourselves to keep this all in perspective and focus on the things we still do have and not what we have lost.

That's the way we get through some tough times. Focus on what is still good, what remains. The more we do that, the better things are able to become. Perhaps he had no support.

Let us focus our prayers and practice sending waves of love and support into the world this season. We all need it.

So, the bus driver says...

This morning, Lib ran for the bus. He stopped to look at our bus driver, Terry. She said, "Good morning, Liberty. How are you this morning?" To which my sweet child looked her in the eye and replied, "Good."

I waved good-bye to her with both of our mouths agape.

It's gonna be a great day.

For you, Dad, to officially kick off the Christmas Season!

'Tis the Season to Lose Your Mind

Will someone please tell me, what in God's name we have come to? A Wal-mart employee trampled to death by shoppers? It's enough to make me want to cancel Christmas this year.

Back by Popular Demand

Here ya go, Barb!

Stem Cells

I was sent this video by another autism mom. I have never watched the show, The Doctors, but on this show is a little boy who had cerebral palsy. He participated in a stem cell transplant research study, and he has recovered.

We banked Liberty's cord blood at birth and pay $50 a year for storage. You may have seen the cord blood kits which are very popular to give at a baby shower now.

It used to be that you could not find a doctor to use the stem cells unless you went to Costa Rica. Even Dr. Bock was impressed that we had the cells, though he said we would have to wait for technology to catch up.

Perhaps technology is catching up faster than we thought. I have no idea about the red tape involved, but I am sure there has been plenty. But, now, with a new president and new research, we might be able to use Lib's cord blood by participating in a study.

Who knows what the implications are for neurological injury with the use of stem cells? I'm sure you remember the late Christopher Reeve who advocated stem cell study, along with Michael J. Fox.

Here's the video. I thought it was exciting enough to share here on the blog.

Woof, Woof!

Click on over to my good blogger friend, Michelle's blog today. She and her husband are in the process of obtaining a service dog for their darling daughter, Riley. Service dogs do not come cheaply, as they undergo a training process to meet the specific needs of the child they are going to serve. Apparently, these pups have done wonders for many children, helping them get along in their daily lives, to feel safe and develop confidence. These dogs can anticipate meltdowns and tantrums, too. They exert a calming influence on children who have difficulty regulating their senses.

Michelle has a story of a little boy and his service dog on her site today. These animals are angels, in my opinion, given the support and love they provide our children. We are looking for a doggie ourselves, although not a service dog, but a dog to encourage speech in my own child.

Fundraising is in process to obtain their dog and begin getting him or her trained. Please give from your hearts and help, if you can, to speed a puppy to sweet Riley!

Thanks.

Reciprocity, Blessings, and Christmas

Lib came home the other day and suddenly went for my feet, grabbing at them. He knocked me on the bed and I thought there was something about my socks he didn't like. (Certain textures even on someone else can really bug him). But, then I realized...he was tickling me! So, I tickled his feet and he tickled mine. He was participating in a tickle game with me!

Sure enough, I got a note from the teacher that day that said Lib enjoyed lots of hugs and tickling in school. Do you love this woman as much as I do?

This is a big deal as anyone with a child with autism knows. Reciprocal play is one of the coveted goals in school and in therapy.

As if that wasn't enough to send me into spasms of happiness, Lib's teacher said he actually participated in a game the other day. Something called Puppy Racers. An actual game.

Then, in adaptive PE, he started mimicking the stretches the teacher was leading them in. I have never in my life seen him do this. Lib's teacher said she attended adaptive PE that day and watched him learn to jump with both feet on a fulcrum that had a bunch of bean bags on the other end, and apparently, he was delighted when he watched the bags fly off the other end. Even when he jumps on the bed, his feet are not in tandem.

Later, at home, I watched him fly around the house and try to jump with both feet and giggle. The PE teacher said she had never seen Lib participate like he did that day.

This is the feedback you live for.

You know, watching Liberty these days is like watching a butterfly emerge from a chrysalis. Or maybe it's more like The Invisible Man becoming visible. First a finger, then a hand. I remember when he could not not jump, could not even run, and would not hold onto a swing. It was is if he wasn't fully present, one foot in two different worlds.

Now, I'm enjoying great eye contact every day. I see him glance over his shoulder at me furl his eyebrows, trying to catch what I just said. He searches my face for meaning now.

This is real progress for my boy. Still, I have to guard myself right now from comparing him too much to neurotypical children.

All over the television right now are advertisements of "the perfect Christmas" where tiny children are recording their voices saying "Merry Christmas" to grandparents. It always gets to me. I look at the child to see if I can guess how old he or she is and what it would have been like if things had been different - if Lib had been talking at that age.

I was in Wal-mart (unfortunately) today and Lib wanted to walk down the toy aisle. There was a child, probably 3 or 4 years old, happily conversing with his mother, saying "I have to have this for Christmas, Mommy." And she would ask him the names of the toys and he would respond. I feel my heart start to sink when this happens. If I allow myself to go there, I will fall into a funk.

I must keep my eyes on the positive. Is the glass half full or half empty? Do I have reason to hope or is all lost? Can it always be worse? Is today all we have to appreciate everything? This is the dialogue I begin when my Emotional Self climbs up onto the ledge again, trembling.

Yes, I am happy that my son is doing so well and he's so healthy.

But, for me, 'tis the Season of Talking to Myself - a lot.

Wash Your Hands, I'm Begging You!

Did you know this could happen?

Here Today, Gone Tomorrow

I can tell that winter is really here in my neck of the woods when our banana trees turn brown. One day green, next day rusty brown.

We had a real cold snap last week and even though I covered up my tomatoes that were just flourishing last week, all green and gorgeous, they all died. I picked the last of the green tomatoes this morning. Hope I'll want lots of fried green tomatoes for breakfast.

This morning, I was lopping off the dead heads of my long-running zinnias and tiny marigolds and putting the seeds in a bag for next year. They had just been sporting gorgeous purple, orange and yellow blossoms the day before.

Last night, I eagerly watched Life on Mars. A cliffhanger. Then I heard the announcer say, "Tune in January 28th for more Life on Mars....."

January. 28. th.

Can you believe this? I finally find a show I'm addicted to and then...they're putting on Lost or something like that for the holidays. Does this make sense?

Here today, gone tomorrow.

I bought a lot of my Thanksgiving Day dinner ingredients to prepare for a huge meal that will be gobbled down in one day next week.

And, Liberty is off for a whole week next week as soon as he gets off the bus.

A. Whole. Week.

Freedom today, freedom gone all next week! Then it's three weeks of school and two weeks off for Christmas break.

AAggHH.

Yep, it's winter all right. It comes in overnight on the Gulf Coast.

Oh---see this? Edy's Limited Edition Peppermint Ice Cream?

It IS here today but it will definitely be gone tomorrow!! I assure you.

You Gotta Have Faith

Amazing video on Oprah of Faith, the dog who walks on two legs!

Don't Touch That Dial

This morning Liberty climbed into bed with me. I got up to make coffee and the alarm went off before I got back to the bedroom. The "alarm" is just the radio coming on. I walked in and went to turn it off, lest my son have an irritability meltdown from the noise, even though it was turned down low. A little hand grabbed my wrist and stopped me in mid-action. He looked at me with wonder as if to say, "Momma, someone's talking to me!" He laid there and listened to a morning show and music. No meltdowns, no covering of ears. Just happy, lying back in bed listening. He bounded happily off to school this morning.

Ya just never know.

The Bucket List

Did anybody see this? I never go to the movies anymore, and I did not rush to rent it. I thought it would be too "cutesie" and predictable. Then I saw that Rob Reiner directed it and I rented. Lib took an early nap yesterday and we got a chance to see this movie. It was much more than I thought it would be. Very enjoyable. What a great team these two are. Loved the message, too.

Read Kiddo Read

Here is a new site created by author, James Patterson, to get children interested in reading. Even though my own son is not reading, I come from a family of avid readers and began reading at a young age. I enjoyed it because my family and school provided some great books to get me hooked. My library card was and still is one of my most prized possessions.

Patterson's site is called Read Kiddo Read. The recommended books are divided by age group and give a synopsis and show a picture of each book. It looks like a wonderful resource, so I am sharing it here on my blog.

I am currently reading Edgar Sawtelle, trying to catch up with the rest of the world who has read it and told me how fabulous it is. I am reading at a snail's pace these days, though, with so much to do each day, I just fall into bed each night.

I'm in Love with Sam Tyler

This is my new favorite show. I have not had a show on prime time tv that I have raced to watch every week in years.

Imagine how much the world has changed since 1973...no cell phones, no DNA testing, no internet or computers...it's fascinating. And the music from the seventies, well, let's just say without telling my age I can relate with many happy memories.

Ray Carling of Sopranos fame is fabulous.

And Harvey Keitel...you've gotta love Harvey and his "Harveyisms."


Okay, there's more, I can't help it! More about 1973.

Veterans Day

My father, who, today is 91 years young, is standing at the end of the line on the right in front of his plane he flew during World War II. He is a HERO to us, having experienced many harrowing missions during the war, including his plane almost being shot down, and landing safely on only two engines. My dad was an excellent pilot and he is just a wonderful human being and father. As a child, I used to hang on his every word as he told about his experiences during World War II. Okay, I still do! It was a time that none of us my age and younger can really imagine. We need to keep these stories alive.

This very plane in the picture above is now housed at the March Field Museum in California, completely restored. I recorded my father talking about his missions in this plane and they actually have a button you can push in the museum with my father's voice explaining and talking about his time in the military! How awesome is that?

Here is a piece that my wonderful sister/writer published for a tribute to Veterans Day in honor of all veterans, and especially, our veteran father. Please check out Susan's blog today. The picture on the blog of the planes in the air was taken from my father's airplane long ago during a mission.

And, it's only fitting that you read the introduction to my incredibly talented sister's memoir in progress about my own family's experience with the military lifestyle.

The Return of Nemo

You've heard me talk about this before and from the comments I have received, apparently many of you agree, that there is something magical or mystical about the movie, Finding Nemo. Each time my son wants to watch it, which is rarely, it signals some sort of cognitive leap.

Sunday, around 4 AM, I am awakened by a little hand and something square poking me in the ribs. Liberty stands there talking in non-stop gibberish and he's holding a DVD in his hand. He is up, raring to go, and wants to watch Finding Nemo. Even though I'm still in a slumbery fog, something in the back of my mind tells me that this day will be different.

And it was.

Yesterday, Liberty was the most engaged he has ever been. His eye contact, his demeanor, his understanding was really different - better. He had chili and chips for lunch and as he ate his chips, he said, "Chip, chip, chip..."

His pronunciation of "Daddy" is now very clear. Daddy does lots of rough and tumble play with him and lots of jumping. Liberty follows him around, not wanting to let him out of his sight when he is home. Libby is signing jump regularly at home and even at school now.

My sister came over and gave him lots of horsie back rides and he stuck to her like glue. He told her to "get up," at one point. (Aunt Susan, get up and give me a ride! I hope she can walk today). They went to swing on the swing set and Liberty sat her down in the swing and tried to push her. Reciprocal play? Wow. A first!

As usual, I'm never sure why these changes occur suddenly, though I'd love to know. I'd give anything to have that magic formula to keep it all going forward, but obviously it is out of my power. I'm just the support, the cheerleader, the advocate, and The Giver of Supplements.

I will tell you that, we changed the formula for the methyl-B12 shots and find it to be better. He's not out of it afterwards like before. So perhaps he is methylating better.

Also, I have really worked on his diet adding in fresh juices, especially spinach and pear. But, yesterday, I added cilantro to the juice. I was out of pear and I juiced a pretty good amount of spinach and cilantro and added a little apple to sweeten it. He loved it. I also added cilantro to the chili, just fresh, not cooked so it would not lose it's punch. Cilantro has been shown to remove mercury from the body.

I just found a recipe for a "detox pesto" that incorporates cilantro and brazil nuts. Brazil nuts are the highest in selenium which removes mercury. I'm still working on that one, gathering ingredients. I will let you know what I come up with.

I have also begun using only Xylitol to sweeten things and the milk I use now is Hemp Milk. I make a pretty good chocolate pudding that is sugar-free and packed with calcium and protein from the hemp milk which is made from hemp nuts. It's a creamier milk that rice or almond and it has a lot of Omega fatty acids in it. I also am making graham crackers and animal crackers using only Agave syrup as a sweetener which has a very low glycemic index. If you haven't tried Agave syrup, you're missing out. It is a lovely syrup that comes from a cactus. It has a mildly sweet flavor and it comes in light or dark (amber) forms. I am doing all of this to help keep yeast down. And I doubled up on the probiotic, NuFerm, probably my favorite supplement next to cod liver oil.

Libby did not crash last night until around 7:30 PM which is unusual to have such a long day with no nap. It was such a great day for him and long overdue. He was just a happy little boy all day long.

I have a small figurine of Nemo that is going up on my alter today. I think he deserves an exalted place right next to Quan Yin.