In case you are the last to see the most watched video

Gotta love free spirits...

Recognizing the Teacher

My sister took this wonderful photo of Liberty on his first day of swim lessons. The attention he gave to Robin, his swim teacher, was phenomenal. She is certainly an important part of his journey. Isn't it an awesome picture?

What We've Been Up To

My precious boy turned 7. The family helped us get him his own laptop he can use in school. It was an incredible deal at Best Buy, too.

He likes to eat out at buffet restaurants and look at all of the people and the food under the lamps.

Here is Lib getting a drum lesson from Dad. His father taught a music workshop for all of the kids at the camp this summer. He had his band out there, who happily volunteered their time to sing and play for the kids. Then, the children had an opportunity to play with all of the instuments: Drums, saxaphone, bass, guitar, and singing into the microphone. The kids and adults loved it!

Lib and his swim teacher, Robin getting a lesson. This is the child who could not tread water and refused to put even his ears in the water who is now swimming on his own! He had 2 weeks of 30 minute lessons and after that, he just took off. The swimming, I have to say, is probably the best therapy Lib has ever had. He has confidence and it has done something neurologically. He was more vocal and present after each swim session. Robin came to our Dad's pool to teach him. She and her husband have a swim team for special needs kids she said that Lib can join as soon as he is swimming well! Look at those little dolphin flipper feet. I could not be prouder of him.

Also, we took him to see his first movie ever at the movie theater on his birthday: Up! He loved it. Aside from two potty breaks, Lib sat through the whole movie. He's really growing up.

Other things: Doing well with our new doc's recommendations. Chelation is a'coming in about a week and we've had lots of conversations about that. AND, the seizures...the absence seizures have returned and we are currently in discussion about that, optimizing his nutrients. There is a mystery here. I thought it was casein that was causing seizures and I removed it about a year ago. The seizures returned at some point and I have to cull back through my notes to see if there is a correlation with any supplement or not.

But, Lib is eating very, very well. He is currently in a growth spurt, so I am hoping we can start getting the lead and mercury and other metals out soon. He has increased his receptive language, we are using pictures and sign, and he is vocalizing more. Still, speech is elusive.

We are going forward at least and Lib is having a fun summer.

Thanks so much for all of your kind emails checking up on me. We have had some ongoing medical issues in the family, and that is one of the main reasons for my absence on the blog but for now all is well.

For all of the folks who have asked me if it's the vaccines...

Scenes from a Gulf Coast Morning

The Big Blue

Treasures from the day, the bounty!

Remnants of a sand castle.

I have not seen the ocean like this in years. Calm and serene, brilliant blue and green and aqua and clear. The pictures do not capture the beauty. Watched a pod of dolphins and two schools of rays go sliding by.

Liberty had a ball playing in the crystal clear water.

The beach is never the same each time you go. It's what we love about it, and it always makes you feel great. Going early morning helps start the day off right. We understand how very fortunate we are to live here, to float in the amniotic waters of our Mother Ocean.

Mom's animal crackers taste good after a swim.

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Absolutely nothing to do with autism

Just A Good Old Song

A summery day

This dragonfly's face looks very Disney-esque... especially when you enlarge the picture...click on it!

Ready for take-off!

Water hyacinths on our pond.

Clouds

My family is undergoing some trying times with some medical issues. Keep us in your prayers and I will be back soon. Liberty is thriving, that is the bright spot.

In the meantime, my sister is writing beautifully, as usual at her blog. I need the healing transmutation of the ocean. I will try and go there soon this week. There are only two weeks of Lib's school left and only four days of each one, then it's suddenly summer.

Full Circle

Years ago when I lived in Virginia, I was privileged to study massage at the Cayce-Reilly School of Massage in Virginia Beach. If you are not familiar with Edgar Cayce, he was a clairvoyant man born in 1877, whose medical readings are all transcribed and cataloged in a library dedicated to him, called The Association for Research and Enlightenment in Virginia Beach. It is a wondrous place. You can read more about Cayce and his abilities and legacy here. There are some marvelous books on the man: There is a River and The Sleeping Prophet are two popular titles, but there are scads of books on the various teachings of Edgar Cayce.

I studied Cayce's remedies for years. I used many of his preparations. Back then I did not know anything about autism, and since I never had reason to, I never looked it up.

Today, as I was doing a Google search on some of Liberty's symptoms, I saw a reference to Cayce and autism. What I found was striking: In many of his readings for children with autism, Cayce recommended the removal of wheat. He also acknowledged the gastrointestinal component of autism, including recommending his famous castor oil packs to the abdomen. He told people that children who were exhibiting behaviors that we now know as "stims" could not help it, that there was a purpose for the movements and for the parents not to try and stop the stims. He talked a lot about the central nervous system's role in the syndrome. In many cases, he prescribed osteopathic adjustments to relieve pressure (inflammation!).

In other words, he was far ahead of his time.

I found it more than coincidental that I found this now, as I am getting ready to try craniosacral therapy for Lib. It was recommended to us by Carol Ritberger, a renowned medical intuitive. I will let you know how that all pans out.

But, isn't it interesting, that all of the components of autism that are known now and that were largely unknown to the majority of medical doctors way back then in the 1930s, were all spelled out pretty clearly in countless readings by this uneducated country man from Kentucky who accidentally could channel Higher Guidance? His story is an amazing one.

Who knew that when I was sitting in meditation 20 years ago, way up on the third floor in Cayce's Meditation Room, where you could see the Atlantic Ocean through gauzy pink and purple curtains, that I would be returning to his readings, searching for more clues about my own son's condition?

I dreamed of Liberty back then. There was always this little boy that would appear randomly in my dreams, and I knew that he would be significant in some way or another. I always knew he would come. That's why when I was pregnant, I knew instantly that I was to have a boy.

Thinking of this now helps me feel that all is connected. That nothing is random. Instead of handed out cliche's about how everything happens for a reason that is meant to comfort - often those statements make me feel emptier - just something that is meant to pacify my pain at the time - when I can remember my experiences like this one, that reveal my own unique connection - ah, that is what I need to hold on to. Then that statement rings true.

No order of difficulties in miracles

Well, the dreaded IEP meeting turned out to be the best yet! Each year, I begin to get knots in my stomach as the day approaches that I have to go to Lib's school, get a visitor's pass and trek down the long and winding hallways to the meeting room, where I have to listen to teachers and therapists report on my son, and it's usually about how they can't find anything to motivate him, how he is inconsistent in his responses, or he is not picking up signs, etc. Usually, I come away depressed for a day at least and have to come home and process all of the new tasks I am to put into place. Process. Adjust. Assimilate. Move on.

This time, it was different. Everyone around that round table sung my son's praises. I barely had to say anything. My son's teacher had everything written out almost verbatim as to what I told her I wanted to see happen from this point on. For the first time since Libby was tiny, we all agreed to ditch the signs he never took to anyway, and employ all methods of working with pictures. We came up with all kinds of great ideas. And, I was thanked for all I do for my son! In addition, everything I want for him was already spelled out in detail in some beautifully written goals by his teacher.

It was so enjoyable for me and my sister to sit back and hear about all of the wonderful things my son is doing. I especially loved it when the OT would smile and say, "and he wasn't even doing that last year!" And, also the speech therapist put aside her usual sparring energy and was so positive about all of the things Lib is beginning to do. I kept saying,"Oh, I didn't know that!" And I'd get smiles all around. Wow.

Lib is responding to pictures and has said a few words. He is becoming even more social and engagable. He is now getting very interested in books and...drum roll here...the spoken word, like having stories read to him! And, here comes autism camp this summer where he will have a teacher to do one-on-one with him for 6 weeks from 9 to 3, four days a week.

I think this has all happened too because, first of all, Liberty has a fantastic teacher. She is BCBA certified and she has lots of years of experience. She loves what she does. She has a routine in place for my child that has yielded almost miraculous results. And, most importantly, she and I talk every day. We have the communication sheet sent home that tells about his day, but she is accessible by phone and email, and we keep in very close touch about what we are each doing so we are on the same page.

Also, nothing that Lib does is a "little" thing in our world. If Lib ate apples, then I get an email in capital letters or a phone call. The day he waved hi to her and hung up his backpack, I got an excited phone call from her. The day he followed verbal commands, used the potty, imitated a gesture, etc. - all of these things are milestones for Lib.

If anything, Liberty has taught me to take nothing for granted. We celebrate the so-called small things. Raising him has caused me to appreciate more and more of my world. It's so true that you don't know what you have until it's gone or altered in some way. The fact that appreciation is more of a reflexive reaction for me now than cynicism is miraculous.

My little boy is such a trooper. And, here he is: Eating well, toileting himself, wanting to play with other kids, initiating games with us...being in the world. In some ways, I just think it is taking him longer to grow up. The speech is obviously concerning, but everything that is considered pre-speech is in place now. And, we have a great doctor. In just 2 short weeks, Liberty has changed his diet and learned to eat 5 different fruits, fill his cheeks with chicken nuggets, and a variety of other foods I have managed to make gluten/casein/MSG/yeast and sugar free! Miraculous! The quality of his food has increased. I joke about how I just put food in his lunch box and send it to school and the teacher miraculously gets him to eat it, and then I can't wait until the lunch box comes back empty and then I just sit and smile.

I had felt so bad about this last year as being his "lost" year, i.e....screwing around with the doctor in NY and the phone appointments and having to start all over again with another doctor, the fact that no one would listen to me at the IEP last year when I said we needed to add in pictures. It took an entire year for the school folks to figure out that Lib doesn't take to signs and it took me a whole year to ditch a doctor who was not helping us and charging us a fortune.

BUT, I realize that the year was not really "lost." Lib obviously advanced a lot with this teacher he had, and somehow we found our new DAN doctor who wasn't even here a year ago. It's only my perception of the year being lost, of wasting time that colors everything. What do I know? Perhaps there are many changes going on all of the time that I just don't see, and would take for granted if Liberty had not received his diagnosis of ASD.

I feel good today that we are least moving in the right direction, that my little boy has what he needs and then some! His teacher is going to be coming to our house one day a week (camp is only 4 days a week) for two hours and working with him and pictures this summer.

I just could not ask for more. There truly is magic afoot!

A lovely piece written by my sister...

A Walk in the Clouds

On Santa Rosa Island, a barrier island on the Gulf of Mexico, a cloud being has come to rest upon the sea and sand. I walk out into it where no other human being appears— perhaps they are wrapped as I am in the soft embrace of a heavenly presence. A gull beats forward from its midst without a sound. The coming cerulean waves arise and dissipate from it.

On the shore line where shells and sea lettuce gather, a translucent blue jellyfish shimmers with the breeze, edged in pale pink diamonds. It is mute. The sky is mute. I am mute. The white cloud being has silenced us all. Where sand, sea, and sky blend my feet are invisible and the prints they make unreadable. I am suspended in the cloud with the sea and its creatures and the land and its inhabitants. We are being lifted out of time and place…suspended with only the waves witness to our revelation.

I walk in the cloud, I walk. Then suddenly at a place where a plain of crystal white sand opens and is illuminated by a fine silver light, I fall to my knees in utter gratitude and sob for the sheer joy of being alive on Earth.

Sea Oats

My sister, a talented photographer, took this picture I am particularly in love with at our beach. Thought I'd share it with you. It just catches the fragility of the morning to me.

Further Along the Road

Lib and I are just recovering from a bout of bronchitis or I would have posted earlier about our meeting with our new doctor for the results of all of the lab tests. If you recall, we basically are starting all over again. Our new doctor is a neurologist and a DAN doctor. I was hoping by our second meeting I would still like him and guess what? I really do! He is a God-send to say the least.

He spent over an hour with me going over test results, handing me copies for me to keep, and only charged me for about a 20 minute visit. The old doctor in NY? Would have charged 4 times as much for 20 minutes and we'd still be in the same old place doing the same old thing.

First, the results of the stool tests showed that Lib has a Pseudomonas bacterial infection. He is on garlic extract for that. That stuff is powerful, if you've never tried it.

Second, he had absolutely no Lactobacillus, the good bacteria, growing in his gut. He had two strains of other non-pathogenic bacteria, but the lack of Lactobacillus blew my mind because I have been faithfully giving a probiotic twice a day that is loaded with Lactobacillus. I was stunned. How did this happen?

I showed NEW DOC the $50 bottle of NuFerm that our OLD DOC put us on that was supposed to be so fabulous. He looked at it and just said, "No." He prescribed a different probiotic twice a day on an empty stomach, added in a Saccharomyces boulardii, (actually a friendly non-pathogenic yeast) twice a day in non-chilled water, and added FOS powder, which basically is food for the good bacteria to make them stay in the gut. He prescribed Diflucan for 15 days at a much lower dose than the one that the former doc put us on last year when we went through so much hell with die-off. Do you remember Lib being on Diflucan for five months in preparation for a trial of Valtrex? Crazy. I see it all now as CRAZY.

Guess what? No OAT (organic acids test) was ever done. God, I'm learning the hard way at the expense of my precious child.

This yeast Lib has I am convinced got kicked up because the former doc did not bother to do labs before giving us a strong dose of DMSA chelation suppositories( I asked for half the dose, thank God) nor did he give us proper probiotics to help the good bugs stick around. He simply told me to double up on the probiotic. For this, we paid how much money for how long?? To say that I was put out about this is the understatement of the year. Here we are having to start all over again. That was too much money and too much hell to be put through to have to start all over again. I need to write a letter to him telling him exactly how I feel. By the way, I cancelled an appointment with OLD DOC because I could not afford $300 and it was after I saw the NEW DOC. Guess when the next appointment for Lib would have been? J U L Y. That's right. And this child, they knew, was undergoing chelation.

Lib also had very little enzymes in his gut to digest his food, so we added some new enzymes, a different brand that is targeted to exactly what Lib needs according to the labs and not just the standard Kirkman DDP-IV with Isogest. He was on that, although sporadically.

If the other doc in NY would have spent more time with me, maybe if I had had labs where I could actually see what was going on with my child and understood it better, I would have been more vigilant with enzymes with every meal. I also was never told the proper way to give the enzymes and probiotics (enzymes with every meal, probiotics in between meals with unchilled water - important). The doc in NY would prescribe something, jot it down, then hand me off to the nurse so quickly it would make your head spin, and suddenly, you're talking to the Nutrient Room where they are packing up a box to ship to you. The Nutrient Room? I remember them telling me to just take everything at once and dump it in some liquid to give to Lib. This is something you should never, ever do.

So much fell through the cracks in Lib's treatment. So many people who I thought were experts, were not.

So, NEW DOC said, the gut must be cleaned up, that it is the foundation of every other treatment we will ever do. Get the bowels moving to remove toxins. No hyperbaric chamber treatment and no chelation until the gut is in balance. Period.

So, in addition to the probiotics and enzymes, the diet had to be cleaned up, too. I was so proud of how far we had come, and still am, but had to do even more so in addition to our two-year stint of being gluten- and casein-free and our one-month period of being MSG-free. So, in the course of one-week's time, we are now soy-free, yeast-free, and sugar-free with the exception of a little agave syrup in a cracker which is eaten less frequently or not all.

I threw out the pretzels for good. All of the Enjoy Life snack bars and cookies had evaporated cane juice, so they had to go. I baked brownies with Xylitol which are wonderful, only in case we have to have a treat. I threw out the apple juice I was using to mix supplements with. I made a batch of Xylitol-sweetened water to use instead.

Xylitol is great. It has some laxative properties to it in larger quantities, it is an antibacterial, and you can substitute it 1:1 for sugar. There is no unpleasant aftertaste. It is purported to kill Candida yeast, too, but I am unsure if this is true or not. The only drawback? The expense. $14 for a 2.5 pound bag.

I think I could teach Gut Health 101 at the junior college now.

The organic acid tests showed high yeast, high oxalates, low vitamin C, and anemia. We are having iron studies done right now. And of course, that low Vitamin D which was practically rickets. And we live in the Sunshine State. That ought to tell you right there, that you cannot get enough Vitamin D in your food or from the sun. There are some people who are positing that autism is caused by Vitamin D deficiency and that Vitamin D deficiency is an epidemic in itself. Did I forget to say that Vitamin D prevents seizures? And, that since being on the Vitamin D I have not seen the absence seizures? Can it really be this simple?

NEW DOC prescribed some new MB12 shots: Methyl-B12 + NAC + folic acid. I am unsure if this is Dr. Neubrander's original cocktail or not (Neubrander is the one who came up with the MB12 protocol). The NAC (N-Acetyl-Cysteine) I am excited about as the organic acid test results said that Lib could benefit from NAC. NAC removes mercury. I am waiting until tomorrow in case there are side-effects, he can hang out at home. You just never know how a child will react to anything.

NEW DOC said he could not give guarantees but he thinks if we get the gut balanced and the lead out, Lib will start talking. I can always hope for that. He wants to talk so badly. I understand...it could be too late. I try not to go there.

So far, so good. Lib is a little trooper. For all we do to him, for all he has been through, he has the sweetest nature of any human being I have ever known.

We only had a brief few-second screaming fit of die-off after starting the Diflucan and the diet, for which I immediately gave some charcoal and now everything is coming along beautifully. I am getting better eye contact and Lib is eating what I am sending to school and what I put out at home. He tries different food more readily. The tactile defensiveness has lessened. I am getting lots of positive comments from everyone.

This will take time to straighten out. TIME. One and a half years ago I started on this path and I thought I had traveled to the right doctor. I could sit and cry over that, but as NEW DOC says, the past is the past, there is nothing you can do about it now except go forward. There will always be that little niggling "what if" in the back of my brain..."what if" I wasted my son's precious time? I didn't waste it, OLD DOC did. And he is rich and famous.

Bottom line is, don't think that just because a doctor writes a best-selling book and is suddenly on the talk show circuit, that this man is the right doctor for you. What happens is, after the doctor "goes Hollywood," the practice goes into crisis. There are then too many patients, not enough staff, not enough time for the doctor to review the records, remember who your child is, and prescribe a protocol tailored to your child. I have learned the hard way. All DAN doctors are not created equal, and just because someone gets published does not mean they are good. Jerry Kartzinel, now famously known as Jenny McCarthy's doctor, said he would turn no child away. No, but that child will probably be waiting three years or more to get in to see him now.

This is probably the hardest part of all, finding a doctor who can serve as a skilled guide to help navigate through this forest of symptoms and treatments. And, finding one who is local or at least nearby where he can actually put his eyes on your child. Remember, NEW DOC took one look at Lib and said, "classic inflammation." He was the one who knew what tests to order, where to begin looking.

This is a long post and I am sure many get tired of reading and give up. I publish details because I get emails from people who ask lots of questions about protocols. I did not want to publish doctor's names too much on this site because the last thing I need is someone suing me for slander. But, I'm not going to keep silent about it either. My husband is completely furious at the old doc. Feels we screwed around for one and a half years.

To end on a more positive note, Lib got into autism camp this summer. His dad is doing the music workshop for the kids so that should be a lot of fun. We have found this wonderful doctor. And, my beloved sister has moved back home to stay! I intend to have a fun summer, spending much time in the pool and at my healing ocean waters and doing all I can to help my little boy mend.

What else can I do?

Happy Earth Day

I took this picture in our back yard yesterday after it rained. Rainbows always give me hope. I have lots to tell in the coming days since we had the follow-up visit to the new DAN/neurologist on Monday. I am still processing it all.

Wish I sounded this way in the shower....

I was looking for John Hiatt videos and realized she was his backup singer for years with the Goners.

Progress

...or...what my kid ate for lunch today:

-Applesauce.
-A sunflower seed crunchy breakfast bar.
-Spaghetti made with turkey meatballs and carrots.
-Chicken nuggets cooked in homemade Italian breadcrumbs.
-Cut up pieces of apple.
-Fritos.
-Bunny Crackers I make.
-Bacon.
-Two bites of strawberries (a first).
-Some pretzels.

I remember when it was just crackers.

I, of course, worship the ground his teacher walks on. Without her, I wonder if any of this would be possible. ABA does work. She just became fully certified this year, so Lib is pretty much getting ABA or Verbal Behavior all year long. We have really been blessed this year.

* * * * * * * * * * * *

As a side note, I am loving Spring today. For some reason, my feeders are attracting a wide assortment of birds. I saw this right outside my window this morning:

These are Indigo Buntings and the one below is a Blue Grosbeak. These were taken through my office window, hence the screen.

Isn't it gorgeous? That's a little orange and yellow on the wings, the rest is sapphire blue.

Need Some Ideas, Anybody?

My talented husband is going to be creating something, I am sworn to silence about that at the moment, but he is trying to come up with a dedication for this thing, and wants it to be a kind of slogan regarding autism. We don't want it to be anything that uses fighting words, like, well "Fight Autism."

To me, when I think about what I want as a parent of a child with autism (let's be clear - with the new disorder that is labeled as autism), what I want is for the government to recognize this as the epidemic that it is (now 1 in 38 boys in England, probably more than 1 in 50 here), that something needs to be done immediately (yesterday), and for the research to be funded so we can end all of the speculating.

So, let's see I want recognition of this epidimic that is bigger than AIDS, recognition of the daily emotional and financial struggles families are going through, insurance to pay for autism treatment, government-funded research to find out why this epidemic is occurring, and HELP for families and children.

For instance, it's just not right that some states give families so much support in the form of respite care and ABA therapy in the home while other states such as ours give NOTHING except some in-home therapy until 3 years of age. The waiting list for Florida for any kind of assistance (respite care, ABA therapy, speech, OT, PT) through the Agency for Persons with Disabilities for us is now 2012. We've been on the list for three years already. So Liberty might get some services covered by the time he is 10 years old. I met a woman at an Easter egg hunt this past weekend who works for the state in the disabilities department and she said to me that I was lucky to have even gotten on the list. Meanwhile, I have a friend in Long Island who says that the state requires children with a diagnosis of autism to have ABA in the home and respite care to cover all holidays. She has people trooping in and out of her home all week long - SUPPORT. Same for folks in Pennsylvania.

Every state should have it.

If anybody can give me any input for ideas for a slogan, would you drop it my way? I want to say "help us help our kids," "give autism a voice - fund the research"...etc. Well, NOT that, but something that conveys these ideas. I don't want things like 'fight autism', 'stamp out autism.' I do like 'end autism' somehow.

And, no I am not someone who thinks autism is this beautiful mutation. I believe that our children are beautiful people, and the kids who can speak, I love what they say. Most of them seem to be so advanced in their thinking for such young ages. BUT, I KNOW now that this thing we are calling autism is a medical condition. We have dirtied up our world and there are toxins everywhere. The kids are showing us we need to change our behavior as a planet.

If you know you have a medical condition, you find out as much as you can about it and you treat it. If by treating my son, do I mean I am not accepting him? No. I accept my son as he is today. My son cannot speak. If he hurts, it hurts me. If his stomach is killing him and he can't tell me, it hurts me. If his brain is on fire and he is screaming, it kills me that I can't help him. My baby has been sick a long, long time and he is just now recovering but not because we just took him to the doctor and they knew what to do. It has been a road I don't want other parents to have to traverse.

I don't want to live in an underground society anymore. I guess I wish Barack and Michelle would take it up as their special project to help get autism research underway, to really green the vaccines, to somehow get everyone together on this and end the divided camps who rip each other apart.

Anyway, I digressed, but I know there will be those who accuse me of not accepting my son.

There are probably lots of metaphors to work with to come up with a slogan. I'll be thinking about it. Let me know if you think of something. And, thanks.

Have beach bag, will travel

Our appointment with our DAN got moved to next Monday due to an emergency he had. It's fine since yesterday, it rained cats and dogs all day and I would have hated slogging through the rain to get to the office.

In the meantime, Liberty has had so much fun over at the beach, that, even though it's still a bit cool and the weather has been windy, as soon as I tell him we need to go somewhere, he runs and gets the beach bag. He is so cute. He slings this giant bag's handle over his shoulder, dragging it on the ground, with a wide ear to ear grin on his face. He even goes and gets my keys for me.

This makes me happy because the beach is such a sensory playground. Just walking on the sand covers all of the acupuncture sites on your feet. You get a thorough massage. That, coupled with the healing qualities of the ocean water and air, it really is a therapeutic experience.

So, guess I better gear up and gas up for the weekends. The ole' Slip N Slide days just don't cut it anymore.

Oh, and did I tell you that Liberty's favorite music these days is Herb Alpert and the Tiajuana Brass? The old, old 1969 CD with the woman covered in whip cream? Yeah, that one. My life has a soundtrack to it. I find myself humming a tune and realize it's A Taste of Honey, or that theme from The Dating Game. Jeez. I love Herb and all, but, you know. I've got to get him interested in something else.

Funny, the sound of the wind or the brakes on the bus hurts his ears, but loud French horns and trumpets, no problem!

Enjoy the Ride on this Trip Around the Sun

The video below is one of my favorite songs. It's not always easy to remember or to actually enjoy the ride of life. Some times are much more difficult than others. Still, in the end, I am so grateful for what I do have and all that is going on. My father is out of rehab, back in his home and doing great! I am so grateful for that. He's such a strong person. A cool person. A really good person, my Dad. I hope I have the resilience he has as I age. My dear sister in North Carolina is coming home for a short stay in May - my beach partner - a true lover of Nature. My sister Barb was down when Dad first came home and I spent almost every day with she and my Dad at his home, and that was such precious time to me, as we always have some good belly laughs. She is hilariously funny. My oldest sister Bev lives here and doing lots of things for my father. She and I have the same tastes in movies and books and since she worked in the school system in Learning Disabilities, need I say that she is the one I take to every IEP? She is the one who helps me with the ins and outs of the school system for special needs kids. I love all of my sisters dearly. My son is doing so well, in spite of lack of speech, I think his body is finally normalizing. He's eating like a real boy!! We have a doctor who is going to help figure out what's going on. I just know it. I cherish that kid. He has a grandmother who loves him to no end and watches videos and laughs with him. He has a grandfather who adores him. And my husband is the greatest father to him. Liberty goes to the garage to see if he has come home yet each day. I love my job. I would not trade it for the world. I might not look or feel the greatest about myself anymore - I've gone and lost my looks - really been pulled through the knothole with autism and all of its grief and desperation. But, I've emerged stronger. I'm still standing! I'll get my damn roots dyed one of these days.

Easter...marks the 21st anniversary of when I first learned to meditate, in Virginia, and the first time I touched my Spirit so deeply, I was changed forever. That could be an entire book that I might attempt to write someday.

In the meantime, this Easter, the season of renewal, and hope and resurrection and rebirth...I will burn my beloved sister's pink candles she bought for me, and bask in their light, and have a day where I cherish all of my life in all of its ups and downs and joys and hardships. What is that last line in Desiderata, my mother's favorite poem? "With all its sham, drudgery, and broken dreams, it is still a beautiful world. Be cheerful. Strive to be happy."

Yeah, I think so. Try and enjoy your trips around the sun.

Monday, Monday

Got all of the tests results back and an appointment has been scheduled for Monday morning with the new DAN!! I am so excited. I am looking forward to seeing the test results and hopefully connecting some dots.

In the meantime, Liberty is doing so well. Just in the last few weeks, he has begun to go to the potty by himself at home, at school, wherever we are. There are still some accidents, but 99% of the time, he is going independently. His receptive language has increased by leaps and bounds. He understands vocal commands like never before. He dresses himself fully, still has trouble with snaps, but he tries. Shoes and socks are no problem. Waves hi and bye appropriately.

And the eating...he ate cut up apples at school today. Some Fritos. Some ketchup on those gluten free fries. He is eating twice the amount he used to eat. Spaghetti sauce that I have snuck broccoli and carrots into, his pot roast and chili. Now eating some chicken nuggets I make with my homemade breadcrumbs. Applesauce. Any gluten free cereal bars and cookies I give him. All of that is great. The apples blew my mind. I am suddenly in recipe mode. Everything I send to school, he seems to eat, so I need new stuff to try! Maybe I should get really crazy and try a sandwich?

I keep reminding my self this is a child who ate nothing but graham crackers after his vaccinations.

Lib has also gotten the hang of using a mouse on the computer. He positions his hand properly with finger ready to point and click. Moves the cursor around, points, needs help to click. He has learned to do this by choosing clips on Playhouse Disney.

His eyes must be tracking well. Never used to. I watched him chase a fly and catch it!

By the time IEP rolls around in May, the teacher said Lib will have met all of his goals for the year. Last year was a completely different story.

It's like he made a leap overnight.

We will see what Monday brings. I am going prepared with questions and records and everything I can think of to help our doctor help Liberty.

In the meantime, we're going to go catch some good vibes at the beach.

Have a wonderful Easter weekend.

More on Gluten Free Living

I have posted a bunch of my favorite sites, some bloggers with recipes, and some places to buy good stuff on line that is gluten free and mostly casein free, on my other blog. I also have a few of my own recipes posted that might help, not many, but things I use all of the time.

Gluten Free and Casein Free Eating

If any of you guys are going gluten and casein free, or even if you have had your kids or yourself on the diet for years, check out this new blog I stumbled upon the other day. This is the link to the blog, but you will see the websites "glutenfreemom" and glutenfreekid" on the blog to click on for listed recipes. I am trying them out as we speak. I have been trying to expand what Liberty can eat, and trying to find food appropriate for breakfast, lunch and dinner is hard. The recipes are mainly for gluten free, but she tells you what to substitute for casein if you are already casein free.

I always love to pass on great finds, so check it out when you get a chance.

What She Said

My buddy Michelle refers us to another blogger and autism mom, a really great writer, for an article that we can all relate to, titled, "Helping a Friend Affected by Autism
Embrace a mother who needs to stay connected." Turn this Autism Awareness month into action! Yeah, baby, what she said. Click here.

Murky Waters

Well, what a title. I have not been posting because for the whole month of March, I feel like I have been kind of looking through a dirty window. Many areas of my life have needed attention on top of the ongoing quest for my son's well-being. And nothing has been very clear until now.

I feel April is going to be a fresh new start.

So, we might be getting somewhere now. I got a call from our new DAN's office. The blood work was in and it showed a very low Vitamin D. It was 17. My doctor said it should be somewhere between 50-70. Liberty also had abnormalities on his labs. Lots of them. Apparently, a picture is emerging because the doc said we will review all of the lab results at our next appointment, which will occur just as soon as we get the stool sample and the urine OAT test back.

I botched the urine sample and had to do it over again. Imagine getting mixed up and putting the urine specimen in a stool sample vial! Like I don't have much on my mind. So, sue me. Geez Louise. The company sent me another kit....with only one vial so I would not get confused again. Thanks, Great Plains!

Oh yeah, the stool sample? The one you have to take for three days in a row, the one you have to take your child off of the important supplements for and cringe while he regresses? After all was said and done and I breathed a sigh of relief, my husband forgot to take it straight away to FedEx and it sat in the truck. Thank God it was a cool day and the windows were down. The company said it was "probably" okay, but they could not guarantee anything. We both cried. It was not his fault. He had so many things to do, including taking care of some things for my family members. He has a lot on his mind, too. So, I might have to redo that one, but I hope not.

Looking at the labs, the picture that is emerging is viral, which is no surprise. There are lots of indications of inflammation, again no surprise, but at least we have something definitive of where we stand today anyway, and it's very good to know.

Oh---I heard such good things about Enhansa, a highly absorbable type of curcumin, that I ordered it. I had no idea it is anti-fungal, anti-viral, and anti-inflammatory. Age of Autism had an article about it when it first came on the market. Our DAN doctor at the time told me he thought it was highly overrated so I didn't try it. I just see too many people having great results NOT to try it now. The regular curcumin I did see some good results with, but it is so MESSY, everything turns orange, and everything, including us, is starting to look jaundiced.

I have stopped chelation, put everything on hold until we get some of the labs cleared up. When we return to chelation, I will probably choose the Cutler protocol. The new DAN likes IV because it bypasses the gut completely, but...I don't know. The jury is still out on that one.

My son also probably needs iron and more zinc (he's mouthing everything still and has forever it seems). The Vitamin A is still low. High lymphocytes, low neutrophils. I read if you have neutropenia your body can't fight Candida. I read lots of things. I talk to lots of people on autism sites and blogs and personal email. The research, the space it takes up in my mind. Oy! Enough already.

Meanwhile, in spite of the incredible challenges going on with my little son, he is doing amazingly well in school. He is eating double what he was eating. He is initiating things by himself. Over Spring break, which was his best ever, I found him going to the potty all by himself. That was for most of the break, on some days, he had lots of accidents. Nothing is consistent and you know what? I believe it is because of his changing chemistry. Because of the X factor we have yet to name or know how it works.

But, there is something going on and we are getting there. We are going to find out what it is, I just know it. The picture is starting to become clear after two years on this dusty old trail. And, my new DAN was right. He looked at Lib and wanted to order a Vitamin D right away. I read that Vitamin D is an anti-inflammatory, actually a hormone, not a vitamin.

It's been a long, long road.

If I focus on what was lost because of this, I could melt into a pool of tears. But, it's not what is important or relevant anymore. We just have to go on from here. This is Lib's story and it's part of ours. I can choose to go kicking and screaming and fearing, or decide to live through this with some hope of grace, with courage and determination, and with the idea that, eventually, we are going to help this child.

Of that, I am sure.

Oh --- it's beach weather here. THIS is what will keep us all S A N E while we do this thing:

Gotta
Love
Those Emerald Green
Gulf Stream
Waters

and sugar white sand....."Mother, mother, ocean, I have heard you call...."

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

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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!