Blogging Revisited / Seizures

I have taken a hiatus from the blog for various reasons. We have been working with a holistic neurologist/DAN doctor for the past few months, trying to get Liberty's seizures under control with natural products, but last week, the teacher called and she saw something new that scared her. Then I witnessed it, as well. Turns out we were seeing true absence seizures. The other behavior we THOUGHT were absence seizures were not. Go figure!

We were able to obtain an EEG fairly quickly. This time Liberty was not sedated but awake. He had to be put in a papoose from head to toe, but the technician was wonderful. He cried, but really he was just angry. Fortunately, there were clear-cut "textbook" absence seizures recorded on the EEG. He had three while we were there. So, my boy is now on medication. We tried to avoid it, but I do think that this is going to help him. I do not know how many lapses in consciousness he has had over the past who-knows-how-many years. I know that if he was having seizures, they only recently became visible around 6 years of age. The good news about absence seizures is that children usually outgrow them. They can sometimes go into complex seizures, so we chose Depakote to cover both.

I don't feel bad about the medication now, because honestly the seizures scared me worse than any fears I might have about the drug. Lib has been on the medication for four days. I might just be being hopeful, but already he looks more connected and rested. The doctor and I decided that this drug is only a "bridge" until at some point we can wean him off, if we can optimize him on other supplements like milk thistle and GABA. Liberty has had paradoxical reactions to the very things that are supposed to help absence seizures such as taurine and melatonin.

I have learned, as well, over the past few months that the yeast issue in the gut will never really be cleared up completely until the metals are chelated. I have tried the DAN way and I told my doctor this, who is a DAN, that I wanted to try the "other" way, namely the Andrew Cutler protocol. He's a chemist who wrote "Amalgam Illness." Anyway, the AC protocol is "low" dose and "slow" meaning it can take a matter of years. This protocol considers the chelating agent's half-life of only 4 hours, reasoning that after 4 hours, the metals are no longer being pulled from the tissues and are free to move about and become reabsorbed. You can only chelate for around 3 days like on the weekend with an 11 day rest in between and, of course, at that point some metals will get reabsorbed. But, I see many children who actually recover on this protocol with no regressions like I have seen and witnessed in my own son. My DAN doctor is cool enough that he listened to me and told me that whatever I wanted to do he was "on board" with and "let's try it." I am so thankful that I stuck with him! His office is now located an hour and a half away from my town but he does not charge the arm and leg and fingers and toes that many of these DAN docs charge.

I hate that the the autism community is divided like this on the proper protocol for getting our children well, but the truth is no one has discovered the one right way to help children on the spectrum.

I am going on my Guidance and it is not failing me. I have faith. And that is everything at the moment. And, I do think that whatever avenue you choose, you have to feel good about it and not anxious. Here's a great quote by Abraham that I saw the other day when I was deciding to put Liberty on medication:

"Is this pill really an effective pill? I this process really an effective process? Anything that causes you to allow what you desire is the process of coming into alignment. And so, we're not, in any way, validating or invalidating anything. Many offer their "dog and pony show" as being the one that works. And good for all of them. We applaud anything that assists someone in allowing the Well-being that they so much want and deserve, to flow. -- Abraham.

Will keep you posted on Liberty's progress...and mine.

My Nike Model

Liberty sportin' one of his Christmas outfits from cousin Heather and her boyfriend, Jay!

Dr. Julie Buckley's new book came out today!

This is a doctor whom I heard speak right before we went to see another DAN doctor in another state about two years ago. She recovered her daughter when she regressed into autism at age four. She is also partner of Jerry Kartzinel, Jenny McCarthy's son's pediatrician. As "luck" would have it, we got on the short waiting list to see her shortly before I found out she was about to publish a book. I know she participates in what is called the think-tank at the DAN conferences. The word that comes to mind about Dr. Buckley is "genuine." She was so clear in her presentation it about blew our minds the first time we saw her, with all of her printouts about the complicated chemistry that results in autism. Plus, she's just a likeable woman with a wonderful sense of humor. She gave me a lot of hope. I so wish now we had switched to her, but hopefully we can at least get in and see her at some point soon.

Her practice is in Jacksonville, Florida, which is about a six-hour drive for us.

Here is the link to the book below as well as her flyer for Build A Bridge Day on January 10, 2010. This is the day, we are going to give her book to our pediatricians, therapists, teachers, and families. I think it's a great idea.

Check out Julie and her site. She's also on Facebook under Healing Our Autistic Children.

Here is the amazon link as well.

And, below is the flyer!


Build A Communication Bridge on 1-10-10!

One of our most common frustrations as we work to heal our children is the difficulty we sometimes experience in communicating with therapists, or doctors, or even family members who just don’t understand, no matter how hard we try, that autism is a treatable medical disease.

Dr. Julie Buckley has written Healing Our Autistic Children to help us bridge these communication gaps. Short and eminently readable, this book introduces the reader to complex science using office visits and patient stories, including those of her own daughter. Documenting the actual published medical literature on which her approach is predicated at the end, this book also does what every physician should always ask- “Show me the science.”

Many of the autism groups have read this book and are very excited about its potential to reach the ears, hearts, and minds of those who do not know how or where to start in working toward recovery. We are proud to participate in “Build A Communication Bridge Day” on 1-10-10.

On 1-10-10, January 10th, 2010, the autism community will speak with one voice, buying and delivering copies of this book into the hands of our teachers, our therapists, our doctors, our politicians, our family members, communicating as one body the message that autism is a treatable medical disease, the science is published to explain why, and that we need to work together to heal the now 1 in 91 children finding themselves on the autism spectrum.

Hilarious, if you want a good laugh!

Liberty playing with bubbles at Grandad's

He is growing up tall..

They are Here to Teach Us

Video here

Merry Christmas Dad!

Cookin'

Liberty got through only the 2nd round of chelation quite well last weekend. He has also had his dose of Enhansa upped. He came down with what looked like the flu yesterday morning. He threw up twice. He was pale as a ghost, I have never seen my child look SO BAD. I took him to the doctor. They ruled out Strep with a swab and flu because he had no fever. Only a teeny little cough that he seems to always get after chelation.

There is a theory that metals bind to viruses, and when you begin to remove metals, you stir up viruses. Also, the information on Enhansa says that when you begin to titrate the dosage up, flu like symptoms can occur.

All of these claims end by saying that major improvement is often seen after these "sick" episodes.

After an entire day of sleeping and no food except a little fresh juice I made him drink, he bounded out of bed at 1 AM, color in his cheeks and pounced on top of me. He wanted water. He was thirsty. He was smiling and dragging his life-size Pooh Bear around with him. I got him a drink and put him back to bed.

This morning, he's up at 6:30 and says, "Dadeeeeeee!"

25,000 X the mercury...

Take note of this, then go listen to that beautiful soothing music I put underneath this post. Sheesh.

Voice of an Angel - Lib and I cannot get enough of this beautiful song

Bleach vs H2O2

I got an email today that I am sure has been passed around a few times, extolling the virtues of hydrogen peroxide vs chlorine bleach. We've been told not to use bleach around Liberty, but you know there is the matter of cleaning the toilet. I was looking around for some more information on the uses of hydrogen peroxide and I stumbled upon Green Living Tips. I got a lot of great ideas from this site, and have already made up by 50/50 mixture spray bottles for the kitchen and bathrooms. I like information like this. Non-toxic, and cheap!

I got an email today from an organization which I guess I signed up for last Christmas. I really like it. HealthyStuff.org is kind of a watchdog for toys and other consumer products that may or do contain unsafe levels of lead and other metals. I checked out the list and decided to post the link. It is kind of unreal what is showing up with high levels of lead. It's in shoes and sunglasses and popular toys. Because Lib had surprisingly high levels of lead on his very first metals test, it is of particular concern to me.

Every time I pick up something that says made in China, I am apt to put it down--oh, yeah, that is just about everything I touch. Are any of you old enough to remember when "made in Japan" meant something was cheap? Now, you rarely see that and if you do, grab the item and save it. It could be valuable!

The world has changed so much.

I never expected as a parent I would have to keep an eagle eye on our environment. And by environment, that means everything inside and outside of my skin! I was reading this morning on the blog, The Upside of Downsizing, about VOCs in shower curtains. I love Elizabeth's site because she always give you suggestions for replacing the offending items. She also describes the best plants to help clean your environment.

Anyway, you might want to check out Healthy Stuff and see if anything you have around the house is listed there!

Chelation

Liberty had a great weekend and first round of chelation. He is doing better than ever, though I still knock on wood, throw salt over my shoulder, and say some Hail Marys each time those words escape my lips. I am hearing more and more words, though nothing is strung together in a sentence...yet. Will keep you posted. I have to keep a wary eye on the yeast/gut factor from flare-ups during the chelation. But, I'm very happy. I feel like we are indeed on a good road again, after taking a detour.

And, that's all I have to say about that, as Forrest Gump would say.

Other than that it is raining cats and dogs here today and STILL the little hummingbirds brave the weather. It is a lovely deep green outside, but the grass...oy! high as an elephant's eye.

A New Beatles Fan

Liberty has discovered the Beatles, a mere 44 years later. What can I say? I am teaching the basics of music appreciation. I was six years old when this movie was made. Hard to believe. He loves this one:

A Good Read

I am always looking for something good to read. It's no secret that I am passionate about Pat Conroy and consider him one of the most brilliant contemporary writers. But books like Pat's don't come along but once every five to eight to even 10 years. I also don't like books that are turned out in a mill. If I see a writer that is too prolific, I bypass them because I am afraid they will be too fluffy, too amateurish.

Yes, I am a book snob. Utterly ruined by Anne Rivers Siddons and Pat Conroy and others.

But wait! I found another who turns out really good reads. They are funny, thoughtful, contain great dialogue and I find myself totally engrossed after the first page - books you can lose yourself in. Sometimes for me, that is just what the doctor ordered.

I am talking about Elizabeth Berg. I recently read Open House which was hilariously funny and a great tale about a woman who undergoes a divorce and takes on boarders. The next one I read of hers was Home Safe, about how a woman copes and finds her balance after her spouse dies suddenly. The one I read this past weekend which had me studying much of the dialogue was, Say When. Oooh, I loved this. Not a voluminous book, I read it in a day. It's about a marriage on the brink of divorce told from the man's point of view. I re-read many things the female character said...thinking, "I've said that." And looking through a man's eyes is interesting. I was really glad I read it.

Check out her website, then check your library. You'll be glad you did!

It's always hard to post something about September 11, 2001. One of my blogs I visit often has a good post regarding "the worst day" by someone who was actually there. You can peruse it here.

Thank God for My Earth Angels

Liberty's new teacher has finally arrived. I got a lot of correspondence from her last night, including about a four-page questionnaire to fill out about all things sensory, what Lib loves the most, his eating habits, dressing, grooming, names of all family members, pertinent things that I feel she should know, what I want to see this year, etc. She also included a full page bio about herself and her experience.

To say I am thrilled is an understatement.

Did you see Julie and Julia? Well, she reminds me of Julie a lot.

Yesterday, I picked Lib up a little early and went to Robert's for a haircut. Robert is one of our angels. We walked in to soft music playing (a guitarist name Govi..ah, he's wonderful), the smell of peppermint in the diffuser, the stained glass water fountain decorated with pumpkins and fall leaves. Instead of immediately trying to get Lib to sit in my lap with me, Robert and I just talked softly and let him wander around. I finally used the noggin for more than a hat rack and put Liberty in a long-sleeved shirt so the hair falling would not bother him. He came and sat with me in the barber chair, facing me. Robert dipped a comb in water and started to comb Lib's hair, and then my hair. Usually averse to this sort of thing, Lib instead closed his eyes like it felt good, and then he started stroking my hair and smiling. Yes smiling. Robert turned on the electric shaver (no response from Lib) and proceeded to give the kid the cutest haircut he's had in a long time.

Sigh....I am just going to bask in the "things that are going well" light.

I think of other people I consider angels who have no idea how well they are thought of, or that I even think of them. For instance, there is a guy at the Target garden center. I don't know his name, but we recognize each other all of the time. We always exchange greetings and chat about this and that. This man is one of the happiest souls on the planet. He radiates joy. He is always smiling and ready to laugh. So, he registers on my radar. He uplifts me during my day. I consider him one of my emotional supports. He is the reason why I feel that, when I have nothing else to give, a smile can mean everything to someone. So I give it readily, even if people don't smile back.

When I thanked Robert yesterday and told him he was A1 on my list, he said simply, "I just feel I'm doing an important service."

Yes you are, sweetie. Yes you are.

Connecting the Dots

Liberty came home from school today and played in his room as usual. He wanted me to get some more toys down from the top shelf of his closet. He knows I hide them under a blanket. Over the summer, I had let him run amuck because he was so bored and he had every toy that he has ever owned on the floor in a great big heap. Monday, I put everything up in the closet except for a select number of toys I knew he loved most.

He indicated by gesture that he wanted his toys down. I very calmly told him that he would have to put away all of his cars, first. He went over to the heap of cars and put them in their bin. After he did that, I said, "Put up your dinosaurs if you aren't going to play with them, and we will get down two more toys to play with." Sure enough, he put away his dinos.

Then he took my hand and led me to the closet. We got down two more toys.

This has never happened. In the past, the usual scene was that he would get excited and have a fit if he heard "no" in my voice. Forget instructions or bargaining. He did not get it at all. It would be a crying, whining fit, especially if I walked away.

This time, however, he followed instructions. He got it.

Later, I was on the phone, and it is not a portable one. He kept trying to pull me off the phone and I gave him the "wait" sign. He was boring holes through me with those big brown eyes, trying get me off the phone and then he left. I finally was able to get off the phone and I heard plastic rustling. I thought he might be climbing his closet and getting things down - or worse - taking all of his clothes off the hanger and throwing them in a heap. I went running to his room and passed the bathroom and saw him out of the corner of my eye.

There he was, digging through the cabinets, trying desperately to get the toilet paper out of its package. He had pooped in his pants, took those off by the toilet, and had apparently exhausted all of the wipes that were left on the counter. I was so proud of him. He gets it!

I got him some more toilet paper and after he finished wiping (well, we actually had to put him in the bathtub at this point) I high-fived him and he gave me a big smile.

Finally, my boy is understanding more and more.

From now on, I will have the toilet paper out of its package ready to go, and I will have plenty of wipes.

And I will honor his silent plea to get off the phone.

More Cowbell!

Lib and I were riding in the car today listening to a homemade CD of old songs. I cannot listen to Blue Oyster Cult without cracking up anymore. Anybody remember this? The great Christopher Walken, Will Farrell, and cast of Saturday Night Live. Watch Jimmy Fallon crack up.

Come Back to Me

Here is my sweet little boy before the vaccines took their toll on him. In fact, this is the only picture from that time around 2003 that I have from my computer that crashed a few weeks ago. Always remember to back up your photographs. I didn't and I lost over 1100 photos. Am I crazy? Yes I am. Absent-minded is more like it. This particular picture makes my heart ache. My son used to throw a ball. Here he is on our old playground in our old neighborhood running to the basketball court. He would stand under it and wait for me to lift him up so he could put the ball through the hoop. He could not get enough of watching the big kids play basketball and I had to hold him back from joining in their games! He had not been walking that long, I remember.

Well, this is what my biomedical recovery journey is all about. Chelation begins Friday for real. It is my hope to dump the lead and other metals out of his little body that has been there for so long, I can't think about it. I am unaware of what he has spilled over the years though just through natural chelation. We give him methyl-B12 shots in combination with N-acetyl-cysteine (NAC) and folic acid. I know that the NAC is a natural chelator of mercury. The fact that Lib is getting better is testament to all that we are doing. And if it's not due to the biomed treatments, well...at least what we are doing is not hindering him in any way, and for that I am so grateful.

My little boy still has that little sprite of a spirit, so innocent and joyful. I ache to hear his voice. Perhaps it will still happen. I still believe and I still have hope that he will come back to me.

New Blogs on the Block

My new friend L has two great relatively new blogs: Grey Street and Southern and GFCF. Grey Street is her blog about her journey through recovery with her lovely daughter Miss B. Please stop by and welcome her to our blogisphere. She has a lot to contribute to the autism community and is a rather cool person, too! She is looking for recommendations for books for her child to order for Christmas, as well, so if you can help, leave her a comment.

You know, we all have our personal hell we have been through with the diagnosis, before, during, and after, and need love and support. Often our familes can't provide that for whatever reason, and we rely on friends whether in cyberspace or in person. I am so grateful for my blogger friends with whom I have formed an on-line community.

L's recipe blog is one I have added to my cache of GFCF meals, because you can never have enough good-tasting gluten free and casein free foods. I'm always on the lookout and directing other parents to easy meals to make for their kids on the diet. And, being from the South, I am especially happy about this! Her cornbread chicken stuffing? You bet I will be trying that one.

This reminds me of long ago when my dad used to make really great bread, and one of his specialities was cornbread in a skillet using Martha White cornmeal. Always the character, at the end of all of his hand-written recipes for me, I remember he used to write "Loosen belt before eating."

Welcome L & Miss B!

The Art of Placement, or Thoughts on a Tuesday

Here is a fun blog I found when I was researching feng shui. Feng shui is a Chinese phrase meaning "wind and water," but, generally speaking, it is the art of placement. Elizabeth Chamberlin is a green interior designer and her blog, titled "The Upside of Downsizing" has a lot of nice videos on the site and tips for greening your environment along with using the ancient art of feng shui.

For most of my life, I have been what you could call a chronic furniture re-arranger. When people tease me about it or ask me why, all I can say is that the energy suddenly didn't feel right and I had to move things about. What I was probably feeling is what the Chinese call "chi" which is another word for life force. Karen Kingston is possibly the queen of feng shui. I have her book called Creating Sacred Space with Feng Shui. In the book, she teaches you how to do space clearing, which is basically clearing out old, stuck energy. Why do that? Clearing spaces and arranging objects in your home (and outside environment) actually can support you physically, mentally, and emotionally.

Did you know that the root word for clutter is "to clot?" I can really relate to this. I feel down when there is clutter everywhere, especially in closets and halls. I feel like I can't move forward, literally and metaphorically.

Yesterday I spent the entire morning in Liberty's room cleaning up his messes. He loves to take things apart and throw them over his shoulder in one giant pile. He reminds me of the rat Templeton in Charlotte's Web, if you remember him. I have watched him swipe a little jar of face cream or my toothbrush and run back in his room and throw it on the heap! He just loves to have a pile of some objects near him. And then he takes from the pile as he plays with things and throws it over his shoulder again, and the pile moves to the other side of the room.

So, yesterday, I was able to put things on shelves and some things in bins and hide them in his closet so he can only play with a few things at a time. (This summer was a free-for-all where I lost my control and he played with everything he owned all at once).

The difference in his room was astounding after I got through with it. Don't laugh but I had some beautiful quartz crystals from long ago that I buried in the earth about a week ago to cleanse and charge them. I put a new one in Lib's room on top of a shelf and prayed some prayers into it. Crystals amplify thought, so I thought, why not enhance this renewed energy in the room?

Lib came home and instead of being agitated that most of his things were gone, he played quietly in his room and started first with his jar of plastic dinosaurs and bugs. Then he moved happily to some playing cards and his matchbox cars which were in bins. You could tell he felt good. He smiled at me and hugged me. Wow, no whining or crying over missing toys!

I recently went to Elizabeth Chamberlain's site and watched some of her videos for the art of placement in various rooms of the house. For instance, she says, and this is well-known "fact" in feng shui, that you should always keep your toilet lid down and fix any leaking water faucets because it is symbolic of your money going down the drain (or toilet)! There is a feng shui grid that you can place over the outline of your house (referred to as the "bagua") that tells you what room falls in what category. For instance, it just so happens that our bedroom falls into the money part of the grid. I looked around and there were clothes stacked on the dressers, papers that had not been filed in the file cabinet, and generally, nothing was well-placed. So, I got rid of the clutter and in front of the mirror I put a nice jade plant (also known as a money plant). Mirrors are powerful magnifiers so I made sure that there was no clutter in front of the mirror, or bills. Don't want more of those. About three days later, I got two unexpected checks in the mail from our insurance company. They actually paid for chelation and some other drugs that I did not expect them to pay for at all! It was a nice unexpected $100!

Now, I don't know if it was due to all of the feng shui "fixes" that I did, but I do know that a ritual such as feng shui does help to anchor your intentions and focus your energy. It's no wonder that ritual is the biggest part of religious and spiritual practices all over the world. This is the main basis for all ritual.

At any rate, my main point is that environment does play a big part in our overall health. I have been told this repeatedly by Liberty's DAN doctors and practitioners. We do have computers and wireless in the house which is supposed to not be so good with all of the electromagnetic frequencies (EMFs) they emit that interfere with brainwaves. My recent DAN told me that watching too much TV or the computer screen could possibly trigger more seizures in my son. Hearing this only frustrates me more. We live in a world full of EMFs - our new technology's unwanted side-effect. Karen Kingston says to get an atomizer and fill it with water and lavender oil and spray down toward electronics and floor frequently, and that this will somehow help deflect these waves. I don't know if that is true or not, but I like the smell of lavender and I love that particular ritual, so I am definitely going to try it. And, I will also just limit how much time we have the computer and tv on around Lib. My doctor also told me that a cordless phone is awful to have in the house and that I should use just a regular plug-in phone.

I think it's nice to know that there are things that you can do around your home to not only make it a soft place to fall, but also to create a kind of sacred space that supports all who live there in mind, body and soul. I have always looked at life in terms of energy, so feng shui makes so much sense to me.

In my grid of my house, the "children" part of the house falls in the kitchen, where happily, I have the correct color scheme, according to the chart. I put a happy, smiling picture of my boy on the refrigerator there.

I have a hanging pot of flowering portulaca or moss rose hanging just outside of the office window and a hummingbird feeder beside it. No one had to tell me how to place these things. Just that placement alone has brought me so much joy. I have never had the pleasure of watching hummingbirds so close by. Sometimes they stop and look in the window. The ginger plants are blooming right beneath the feeders, so I know it must be a wonderful heady pit-stop for them.

I am interested in hearing your experiences with feng shui, if you have ever tried it, or do your own brand of the art of placement in your environment.

On a bigger scale, PBS is planning to air Ken Burns new series on the history of the National Parks. Can you imagine what life would have been like if we did not have these beautiful places exempt from building? It airs September 27. It took six years to make the film. You can go to the site and watch a trailer from the series. It looks fantastic!

Dolphin!

Look at this sweet baby...photo of a dolphin taken by Barrier Island Girl at our beach. Wow. She is one talented photographer who seems to always be at the right place at the right time! Had to share.

You Can Never Have Too Much Butter

...says Julia Child, and, who can argue with that?

I saw Julie and Julia this summer with my three sisters - the first time we had been together in many, many years.

The movie was lovely. I left the theater starving. Here is the movie trailer in case you have not seen it.

This movie along with my love of cooking made me want to know about all things Julia. She was actually a remarkable woman who had a very long and loving marriage. I remember well watching her on PBS in the seventies. PBS has brought back videos of Julia's French Chef episodes you can play on their site. It's lots of fun watching her.

Also, this episode from Saturday Night Live was actually in the movie. Dan Akroyd had us all saying, "save the liver!" in kitchens across America. It's as funny now as it was the first time I saw it in the 1970s. Unfortunately, you have to get through the advertisement. This is the only site that has the clip; but it's worth the short wait.

I Love You Pat Conroy

I am deep into Pat Conroy's new book, South of Broad, and, again, I am practically rendered speechless with each page. His writing is pure craft.

I do not know where he gets his ideas for his characters. They are always unforgettable. I have laughed out loud and cried in the same paragraph. Each chapter is perfection.

If you have never read Pat Conroy, go out at once and get yourself a copy of this magnificent book. I never thought he could top Prince of Tides or Beach Music, my absolute favorites in the world, but he may have proved me wrong.

Today, I appreciate the silence and peace of my home while Liberty is at school until after 3 PM and I am all alone with this delicious book.

Pure bliss!

Turtle Tracks

Check out this amazing photo on our beach of a female turtle's tracks from the sea to lay her eggs in a nest in the sand. I have never in my life seen them. photo by DJ Zemenick

A Nice Twist of Fate

It's been a long, long summer.

Yesterday, I trooped to my son's school in the 100% humidity to meet the teacher and drop off supplies, although there was no teacher to meet since my son's teacher quit right before school started. But, the aides were there and there was a packet for me to pick up.

The school is under construction in some parts; actually it's the old buildings that have been torn down so new ones can go up. The construction was supposed to be finished by the start of school but predictably, it's not. I don't even think they are near finishing which really makes getting in and out of the school difficult.

The parking is so limited, we were asked to park in the field across the street and take the tunnel under the road to get to the school. I knew that Lib walked that tunnel to get to the field for PE and other school events but I had never walked in it myself. Well, it's like a hot, sweaty bomb shelter. It's all plywood floor and peeling paint and dimly lit. Even spookier to think of the cars rushing over the top of our heads on the busy street above.

Liberty had his first meltdown of the summer in that tunnel and I felt like having one myself.

Eventually he calmed down and there was good news awaiting when we finally got to Lib's room. The aides told me that a teacher has been hired, but she is moving here from South Carolina, so Lib will have a substitute teacher for about a week and a half. What's more, they were excited to tell me that her credentials and experience were impressive, perfect for the class, according to them. I also learned that they hired a new PE teacher who happens to be a man, which is great for Lib. They said that PE should be really fun this year. There will be six children in Lib's class instead of four like last year, but the good news is three of them talk. It's still not a bad teacher child ratio when many classes for autism in the bigger city have 13 kids in them.

Next, I got a call from the bus driver and it turns out she is our bus driver from about two years ago we really loved. She is going to be picking up and dropping off: 7:40 and 3:17. Aahh, I feel a little relief coming...

And, I got even more good news yesterday. My sister (aka ace-in-the-hole) called the Center for Autism and Related Disabilities here in town and found out that someone will come to my home and help me do a picture schedule and other things tailored to Lib's needs specifically at home, and that person will further serve as a liaison between home and school to make sure the teacher is on the same page. Now, this floored me because I talked to someone from CARD at least 2-3 years ago, and all they could offer me was materials and supplies for me to make on my own.

It also turns out as well that my sister knows the person who will come to my house personally!

So...a nice turn of events after feeling miserable for the last two or so weeks. And, I knew that while things were falling apart they were probably falling together somewhere else. I know that things usually work out for the best, but I just wish I could be stoic about everything when things are going badly. I wish I could have more faith I guess. It's hard when I'm feeling sick and my back is out which ironically is precisely the time to have faith.

A work in progress, that I am.

Anyway, I feel the tide turning. It's good. I am so ready for school to start and I know Lib is, too. I will probably be out on our curb at 5:00 AM with my binoculars scanning the horizon for a speck of yellow, excitedly jumping up and down in my pajamas.

Oh, but I will miss him, too though. We are so joined at the hip my boy and I. My swim partner. My good little shopper. My sweet, loving child who loves nothing more than to ride in the car with Mom and listen to music.

Ah yes... but the taste of sweet freedom is already upon my tongue! I am so ready for a break.

And, I deserve it.

Happy Birthday to Me!

Today marks 50 years that I have been on this planet.

My father sent me these flowers, although the picture does not do them justice.

It's a funny thing but in the weeks before I turned 50 years old today, I had a series of things happen:

1) I got laid off from my job for two months, and actually am still waiting to hear if I will be hired back in October.

2) I got really sick about a week ago and am just now getting over acute sinusitis and bronchitis.

3) I re-injured by back and have been hobbling around or lying around in the house going stir-crazy with a child who is bored beyond imagination.

4) My computer crashed and I lost everything, including over 1,000 pictures, my medical dictionary and the transcription shortcuts that were unique to my work (who knows how many thousand).

5) Liberty's beloved teacher quit. The one sure thing I kept saying I could count on for next year. He might even start school with a subsitute this year. I'm hoping for the best, but it was a blow.

I feel a re-working of my life taking place, like the slate being wiped clean so I can begin again. I'm turning my thoughts to perhaps doing something else now for a living, but what exactly has not yet revealed itself to me.

On another note, one of my birthday presents was Pat Conroy's new book, South of Broad, which I am relishing in a way that only Pat Conroy groupies can. He is my favorite author on this earth and he has not disappointed with this new novel.

Today, I am keeping focused on gratitude for my family and friends, the health I still have, the roof over my head and food on the table. I'm reframing my opinion of my age spots into just friendly freckles that are reminders of all of the wisdom I have gleaned from living. The hint of gray beneath my highlights I am referring to as glitter. And the wrinkles, laugh lines which remind me of all of the occasions I have had to smile (not frown).

I could talk about how Liberty's illness has made my face careworn. Or how exhausted I have been and, therefore, aged before my time. But, suddenly, I don't feel that way anymore. It's been a very long road with my son, and probably a lot more ahead. Instead of sadness, now I feel a kind of satisfaction that I have put forth all of my efforts and energy into helping this child feel better and do better in the world. What cause could be more worthwhile than that? Instead of keeping me from some unfulfilled destiny in life, I see that he was and always has been my destiny. Taking care of him and raising him is part of the ultimate "plan."

So, today, as I turn 50, I am not bemoaning my fate as I thought I might. Instead I am celebrating what is and, even though "what is" others might view as tragic, Life, for me, is still pretty damned good.

Picture This

I'm swimming lazily on my back in the pool. There is no one else in it but me and my son and he is on the other side practicing bouncing on his toes in the 3 1/2 feet section. The cumulus clouds are blinding white against the intense azure of the sky, framed in my view by the tall pines and oaks that surround the pool. The only sounds are the drone of the cicadas and a family of squirrels scampering through the trees. Dragonflies occasionally swoop down for a drink or to light on my toes. I stop swimming and look across the pool at my son who is happily doing the breastroke all on his own. He has a big smile on his face as he blows water through the space in his teeth in one big stream. He is my little otter. "Having fun?," I ask as I get out and towel off . I spray sunscreen all over my body and set the lounge chair to the reclined position and relax, a word that has been foreign to me until now.

I see we have been swimming for 2 hours. Lib had his last swim lesson of the summer this morning, in which he learned to go in the deep end to swim, and to jump from the side. A sudden and loud crack of rumbling thunder causes me to jump. I look up and see the clouds have morphed into huge billowing towers of puffy white thunderheads. I like to imagine as I look at them that I can actually hear them blow up, like the swoosh of hot air balloons. We are heading toward out traditional late summer afternoon of thundershowers and I am in love with the day. August is my birth month and it is special to me not only because it is my father's birth month, too, but August is the time for hummingbirds sipping at the feeders, the change of light that turns into liquid gold in the afternoon, and the spectacular tapestry of mixed sun and clouds.

This summer has been my first taste of freedom in seven years. The fact that Liberty can now swim on his own, and that we have something we can share together that is beneficial to both of us is a miracle. I have gotten much needed exercise. He has developed muscle tone and confidence. I can't remember the last time I spent so much time in a pool - maybe not since I was a child myself. It's been so much fun.

There has been an unexpected and welcome benefit as well: Lib is starting to say words. Even two-word phrases slip out now and again. The other day, after a long day with my family, I told him we were going to pack up and go. He said, "Well, good!"

We are starting chelation soon. I know I have said it before, but we had to start over again. The diet- cleaner. The bowels - moving. The supplements - tweaked. All food cooked from scratch. Exhausting, but moving ever toward better health and Lib's current state I feel is testament to all of the hard work we have done. Now, the metals we will address soon and see what happens.

In the meantime, my dear friend Michelle, sent me this wonderful article today that has inspired new hope in me. It is written by Wendy Fournier, president of the National Autism Association. Her daughter Aly has been non-verbal since her vaccinations. But...she began speaking at the age of nine! There is a video you can watch of Aly verbally identifying all of the letters of the alphabet.

You can read about Aly and watch it over here.

Hope. It's what I'm all about these days.

Here is a link to a blog of a photographer who takes the most stunning pictures of our area that I have ever seen. She also volunteers to help our sea turtles nest and help the hatchlings safely to the sea. Check our Barrier Island Girl for some beautiful pictures.



And, here's my beautiful boy taking his first bubble bath. We ran out of regular bubbles that I sometimes blow when he takes a bath. Spying the empty bottle, he went and got a lavender scented bath and shower gel of mine, looked at me and then at the bath and got in. I had no idea that he knew it would make bubbles. Smart kid. He is so "in there."

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.

.

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!