Down the Rabbit Hole

"Would you tell me, please, which way I ought to go from here?"

"That depends a good deal on where you want to get to," said the Cat.

"I don't much care where-" said Alice.

"Then it doesn't matter which way you go," said the Cat.

"-so long as I get SOMEWHERE," Alice added as an explanation.

"Oh, you're sure to do that," said the Cat, "if you only walk long enough."

And so it is on this daily sojourn with my son and the diagnosis that changed our lives, that I must remind myself over and over again, we are getting somewhere. True, life is not the destination, it IS about the journey. But the reality is as John Lennon put it so well, "Life is what happens when you are making plans." None of what we have experienced with our boy, or our marriage, was in our "plans." Stuff happens and that is just the way it is. How you respond, how you perceive it, is up to you.

For us, our journey and destination are now one: Simply, the state of well-being.

I didn't know we were part of an autism epidemic three years ago. I didn't know what a road lay before us. Had I known then what was going to transpire, I think I might have jumped off a bridge because it's only in looking back that I see more clearly just how much we have been through. I didn't see that giant boulder rushing toward us. We suffered a lot in the beginning. We were so confused and did not have the resources that are available now. As little as four years ago, information about biomedical treatment was just not available to the mainstream.

My son did not sleep through the night from his birth until the gluten-free, casein-free diet he went on this past May. For four years, I was physically and emotionally exhausted and actually am still recovering my health now.

Even so, I think it took me awhile for an understanding of this thing called autism to sink in. Now, that my son has turned five, I see it so very clearly now. When he was a toddler, it was harder for me to pinpoint, it was not so glaring - at least to me, an older mom at 42 with no other children, no friends our age with small children. It was something that slowly dawned on me. Now, I can see it in the children of others; can spot it almost immediately - still many pediatricians do not know how to diagnose it, or drag their feet.

Pediatricians were of absolutely no help to me at the time of Liberty's diagnosis, so I turned to the internet, like so many others and discovered "The Underground" as I like to refer to them now - those pioneering families of children with autism who were recovering their kids on their own. This is how I found the DAN! doctors. No one in my vicinity had ever heard the word.
So, the parents of newly diagnosed children will begin now to have more resources available, at least in the form of information. Jenny McCarthy came along and made the CDC shake in their boots; she spread the hope of recovery, made more people aware of the diet, and dared to say on national television that "no way in hell" would she vaccinate her child again. I respect her a lot for putting herself on the line. But she knows her mission.

Eventually, our voices will be heard. I wonder how loud we have to get, though? Maybe one day insurance will actually cover services. Perhaps these parents won't feel so alone as we did. I do my best to try and connect parents, basically to hope, where the "action" is, where the truth is. I did not want to join any groups in the beginning. I was too scared that if I joined a group, it would seal my little boy's fate. He was only 20 months. It was almost unthinkable to hang a diagnosis of "disabled" on my sweet baby. It still is, even today.

Thank God, I now have a doctor who said to me the other day, "If I wait for the hard science before I treat a child, I will lose a whole generation of kids, and I'm not willing to do that."

It really is like we fell down the rabbit hole and, as things keep getting "curiouser and curiouser," have spent our time ever since wandering around, this way and that, asking for the way through, the way home. It does feel like a dream, but it's a very large collective dream, now, isn't it?

So, we just keep walking along, following the well-worn paths through the woods that other parents have made for us, and in that way, ensure that we will, indeed, get somewhere.

Love.

Getting the Bugs Out

I had a great follow-up appointment with Dr. Bock. I actually had it early this time because of the snow storm that was rapidly moving into the New York area.

Basically, he said Liberty showed some lead and mercury, but nothing terribly significant where he would push the DMSA chelation right away, and that Liberty could have been detoxifying all along (I did some Bio-Chelate at one time) and also the MB-12 shots help.

[I have to stop here and advise anyone who has received results in the mail from France not to try and interpret them themselves...I was convinced my son had lead poisoning!]

Dr. Bock, however, did think that the Virosis findings on the lab results from France were significant and, since I told him about Liberty still having some cradle cap, too, we are going to first do an anti-fungal with Diflucan, and then an anti-viral with Valtrex. We tweaked the supplements a little again, too. After our next follow-up appointment we will discuss doing an IV chelation in another DAN! doctor's office in New Orleans. I will cross that bridge after the virus issue is addressed.

I will have to get liver function tests to make sure those are okay while giving Liberty the Diflucan and Valtrex. I just hope we don't have any severe reactions of die-off. I am sure we had some when we went on the gf/cf diet (7 months ago). I had about 3 weeks of all sorts of wierd acting out, then peace and sleep reigned. Well, that hell was well worth it.

Anyway, I love the fact that I enjoy talking with Dr. Bock and when I get off the phone I feel encouraged and supported. Dr. Bock is really a cool guy. He also has my son on some fantastic (green) superfoods which I appreciate. Liberty's appetite has doubled and he has gained weight.

So, I am particularly excited about doing the anti-fungal/anti-viral routine because of this article by J.B. Handley entitled, "Is Autism an Infection?" that I read about a month ago over at The Age of Autism:

http://www.ageofautism.com/2007/11/is-autism-an-in.html#more

When I read it, something about virus/fungus/metals just rang true. Jenny McCarthy talked a lot about anti-fungals in her book, too. We will see. I know I will have to be careful. The only side-effects that Dr. Bock said he has seen are mainly agitation with some rare stomachache and headache. The nurse told me to get some charcoal to use if Liberty has an upset stomach.

By the way, I had to sign a consent form for Valtrex being "off label" since it is used to treat the herpes virus.

Onward, and hopefully upward, we go.

A Different World

Tomorrow is our appointment with Dr. Bock. Let's hope he's on time. Okay, I can always hope. Love him. Appreciate him. He is so busy, though.

I am eager to talk with him about Liberty's test results. I don't have them all, and I am avoiding thinking too much about them today. I have to keep telling myself that this is why we "hired" Dr. Bock - for his expertise. Still, it's one thing reading anectodal stories and researching the DAN! protocol, etc. and quite another to look at your child's tests results in your hands with metals glaring back at you. I knew it and thought I'd be relieved. Initially, I was. Then, the questions started rolling in. Where did he get lead, PCBs, mercury....from vaccines, sure, but lead? That much lead? Is this really lead poisioning I'm seeing?

Yesterday, I was in Target, and on my way out the door, I stopped at a wall of Christmas lights, thinking I might get a cheap set and throw some on our big evergreen out back. I flipped the box over and on the back there was a warning, paraphrased as something like this:

Warning, handling these lights exposes you to lead. Lead has been shown to cause....[all sorts of nasty stuff]...make sure you wash your hands before eating or touching a child....

I thought about decorating the Christmas tree the other day with our gazillion lights we store in that box in the garage. Did I wash my hands? Eat a Christmas cookie while decorating? How many times did I touch Libby or did he touch the lights? Even the cute little figurines they sell that light up and have the train going around the track and Santa flying overhead with his reindeer have the same warnings on the box.

It's getting so I just can't keep up.

Now, they say don't microwave anything. I told the teacher the other day to take Lib's food out of the plastic and put it on paper plate when she heats up his lunch. He won't eat a sandwich, so what am I to do? You don't eat cold spaghetti (well some of us do, but that's beside the point), or pot roast or chili (his three major foods) cold do you? I could send water in a glass bottle, but they frown on that because it can break.

I just watered my lawn and touched the lead-infested hose. I forgot to wash my hands. Now my keyboard is probably covered in lead dust.

I just want someone to tell me how to live so I am not further contaminating my environment anymore. I like to stay in the solution and not dwell so much in the problem. I know there must be a new habit or routine I can get into. I've bought Seventh Generation products. I read labels. I clean with Simple Green. I guess I need to get a shower/water filter for bathing now.

Some people say, live your life and don't worry about it. I used to think that way. But now that I have Liberty and he is living proof of our toxic world, I think we have to, not worry so much, but be conscientious and take appropriate measures. Thing is, where do you get reliable information about what is toxic and what isn't? I don't have a lab in my home to test everything.

I know to wash my hands a lot and especially now because of the Staph bug. Do I just swab the house down routinely and vacuum a lot? I think so. I mean, it's all I can think to do.

I think I will ask our homeopath what he thinks about this and report back about it. Save time scouring the internet, like I have that kind of time anyway.

I would love to hear about what kind of measures you have taken to "detox" your family from these environmental assaults! We need a new way to live in this obviously different world.

Results Finally In: It's Metals!

It's very odd to be doing a happy dance over finding out your son's metal load is off the charts, but I'm thrilled because we know what to do about THIS, for certain!

Our appointment with Dr. Bock is Thursday. The results of the metal challenge we did with the one pill of chelation he has in his office, so I don't know the results of that.

But, in looking at the porphyrins/pterins test from France, I see that lead is the highest, and mercury second. There are also other things that I truly don't know how to interpret, including his creatinine level and a viral load.

I will wait until Thursday, but I just had to shout it out people:

I KNEW IT, I KNEW IT, I KNEW IT!!!!

This validates for me the vision I had when I was meditating after a yoga class some time back in March or April. I silently asked what Liberty's problem really is...and I saw an image of THE FTD MAN. I thought it was just something crazy, or what I ate for lunch that day, but then some time went by and it hit me:

The FTD Man is Hermes in mythology......The God Mercury.

That's all I'm saying.

Setting the record straight

My answers to common questions from well-meaning people who don't "get it":

1) Why don't you just accept your son the way he is and quit worrying? (This is usually in response to telling them about the DAN! protocol, which apparently seems too fussy or too hard):

Answer: I do accept my son the way he is; however, my son has an illness most doctors do not know yet how to treat. To the best of my knowledge, he didn't come into the world with it, and it's my job as his mother to help him ever-increase his well-being and his ability to adapt and live in this world as it is. Us mothers know when we are really worrying. But, what you may perceive as worrying, is just our forward-thinking minds anticipating what could be coming down the pike and to help our kids be ready. If we didn't do that, we would be negligent.

If you spent a lot of time in my world; that of IEPs and therapists and teachers and doctors and articles and the media, you would probaby "get" us mothers and why we do what we do.

2) To the probably not so well-meaning occupational therapist who brazenly announced to the entire waiting room that Liberty was crying because, "he basically has had everything done for him..."

Response (which is late in coming because at the time, my jaw could only drop in incredulity at the insensitive remark from the therapist with five neurotypical children at home):

The thing about my kid with autism is that, one week he might suck at fine motor skills and, therefore, I cannot spend 8 hours making my son pinch his tiny fingers around the top of his socks and pull them on his feet. I have things to do like pay bills, cook, change diapers, go to the grocery store, cook ahead GF/CF stuff, and work. That's just the way things are.

The next week, his skills might have changed, and even, perhaps, his listening skills, and he might be able to do some motor planning and actually pull his foot up towards his little fingers that are trying to hold the sock for him to stick his toe in...he might get that, but he might not be able to actually pull it on.

The next week, he might get it, but maybe he can only put his sock on halfway and then take it off and throw it across the room, about 300 times before I finally put the damned shoes on the feet and head out the door...to see you, by the way, the therapist WHO HAS MORE TIME THAN I DO AND AN ASSISTANT TO TEACH HIM HOW TO PUT HIS SOCKS ON!!

I mean, come on people, give me a break. I do it all, and I try and spend time and teach, and show and talk and demonstrate, and then show again....but don't tell me it's my fault because he has had everything done for him. That is total bullshit and the people who know me and see me in action and know my son know the truth. I try to help him to be as independent as possible. In our situation, I don't know how much understanding there is when we talk. He gets things more when you demonstrate, but having speech and understanding other's speech comes in handy when you are trying to TEACH a child how to do something. Attention span is extra nice, too.

Most therapists and teachers I have contact with know that I am more than willing to accept constructive criticism and am always open to ideas for improvement of what I can do for my son on a daily basis. I don't dig judgments from a "professional" who has no idea what she is talking about. Perhaps being smug makes her feel important.

3) What bedtime stories does he like?

Answer: I have never read my son a bedtime story because his attention span is so short, he cannot allow me to read and turn pages. He also likes to look at books by himself. The moment an adult shows up to help, he's not interested. Shocker, isn't it?

4) Don't you know that you have to take time for yourself before you can really be of help to anyone else?

Answer: Come live in my world and then say that to my face without bursting out laughing.

My version of "taking time" for myself is different from yours because I rarely get a break by myself. I rarely get to go out to dinner. Have not been to the movies in years. Forget "vacation," what's that?

School has been a blessing because I know my son is with people who understand what he needs for most of the day. But, I don't get to take a class or get my hair done or anything like that unless it's during school time and I don't have to work. I definitely don't get to go out of town and have never been away from my son all day or overnight. I've never even slept in since he was born. And even though I might have a babysitter for a short time, any longer and it gets difficult for the babysitter and for Liberty. Most of the time when people ask me, "Why is he crying?" I don't know. It's real simple, I just don't know most of the time what is really going on with him, but I am skilled at knowing what to do to redirect him. I make him sound like he is a behavior problem, but he is far from that. He is a delightful child. He just gets frustrated, like anyone in his situation would do, when he cannot communicate his needs.

Taking time for myself now means I pray. I do a nanosecond of yoga. I sometimes get to get out and walk a little. But, I pray a lot throughout the day and I meditate a lot and always ask for spiritual Guidance and to stay connected to Source, and I'm telling you, that is one "muscle" that has gotten a lot of exercise over the past few years and it helps a lot.

A Whole Big Lot.

I guess I needed to finally got that off my chest.

Have A Lead-Free Christmas!

Here are some links to toy companies who sell safe toys. I particularly loved Ebeanstalk which looks like it is for young children, 4 and under, but I found some things that my son would love like their cars and garages.

http://www.ebeanstalk.com/

Blue Dominoes site lists about six more links of safe toys and is a nice site itself.

http://www.bluedominoes.com/kids_gift_ideas.php

http://www.grandrivertoys.com/

And, here is a list of safe toys from Fox News:

In light of the recall of nearly 1 million Chinese-produced toys tainted with lead paint, below is a list of toys made in the USA:

• Battleship• Bicycle Playing Cards• Boggle Jr.• Candyland• Chutes and Ladders• Clue• Connect Four• Crayola Crayons *• Life• Louisville Slugger• Monopoly• Mouse Trap• Operation• Parcheesi• Play-Doh *• Pop-O-Matic Trouble• Radio Flyer Discovery Wagon• Scrabble• Sorry• Stratego• Tri-ominos• Trivial Pursuit• Yahtzee• Melissa and Doug U.S.A. Floor Puzzle (Most puzzles are made in the USA!)

* Note: Not all packages of Crayola Crayons and Play-Doh are made in the USA -- please check the label.

Also, anything you buy from the American Plastic Toy Company is made in America.

You can also find American-made toys on these Web sites:

• www.ShopForAmerica.com• www.ZebulonUSA.com• www.usmadetoys.com•

www.unclegoosetoys.com• www.holgatetoy.com• www.maplelandmark.com

Finally, for more information on how to buy American, visit: www.howtobuyamerican.com

Anything's Possible!

A 10-year-old girl raised money for research for her brother with autism. A lovely story in case you missed it...

http://abcnews.go.com/GMA/OnCall/story?id=3950843&page=1

After complaining about blasted hot summers...

Beautiful Gulf Coast winters!

Finding the Good Feeling Place

The following (in purple) are direct quotations taken from Esther Hicks (The Teachings of Abraham) as seen on the first version of DVD, The Secret.

I share this because I have gained a lot of insight and peace by reading the Abraham books and philosophy. I made sure that I wrote them down in my journal because the quotes are in regard to relationships.

I think they are particularly apropos in my situation with my son because I need to stop wishing for him to be other than he is, so I can be happy. For certain, having a non-verbal child is really hard. I long for his voice. I long for a conversation. I long to hear his take on the world, his perceptions. I want to KNOW him. Right now I simply intuit who he is, if you get what I mean. It is kind of like having only peripheral vision. I feel him and his energy, I have a perception of his beautiful Spirit. Such an affectionate sweet child, he is beloved by all of his teachers, therapists, and family. And, I am grateful for his good nature which I felt from the moment I held him in my arms.

As I read all of your blogs, I celebrate with you each time you transcribe a funny or profound conversation you have had with your child. One mom reported this morning that her son just began singing and what a joy it was to hear. It gives me hope. But, at the same time, I must accept the very real possibility that my child will remain nonverbal. He is not mute, he makes noises and he tries to say words. But it is not the same as hearing him speak words. So, even though I have been in a grieving process since his diagnosis 4 years or so ago, which I believe is only natural, I do need to be able to maintain a sense of stability, balance, and peace with where we are each day. You have to move on...which is easier said that done, and everyone must find their own way.

Abraham says that you must first do what you can to find thoughts that bring relief and get yourself feeling good, and from that place, you can then attract more and more better feeling thoughts, and better circumstances through the powerful Law of Attraction. I know this is true because I have turned unpleasant feelings and situations around very quickly by practicing this technique. And, trust me, I have had many opportunities to apply this wisdom throughout the years.

Therefore, I share the following wisdom from Abraham with you that really helped me to do this:

"If you knew your potential to feel good, you would ask no one to be different so that you can feel good. You would free yourself of all of that cumbersome impossibility of needing to control the world, your mate, your child. You are the only one who creates your reality."

And, the following quote has helped me tremendously in regard to my marriage. Having a child with autism creates a tremendous strain on that, as I am sure many of you know. So, I remember this and it has helped me avoid a lot of conflict:

"You must orient yourself to the best part of them. Make a list of positive aspects. Those people will become mostly that to you. And, even though you cannot create in their reality, if they are in a mood or an attitude that does not match the mood or attitude that you have about them, they will zig while you zag. The Law of Attraction will not put you in the same space together. The frequencies don’t match up."

I just discovered yesterday that my son has a bottom baby tooth that he is about to lose. I cannot believe that we are here already! I cannot tell him about the tooth fairy. I guess that is what precipitated me feeling a little melancholy today. But, then I thought, perhaps, I will save all of the baby teeth that I can, and, if he ever does talk, I can tell him about the Tooth Fairy and boy will he hit the jackpot overnight.

My job is just to love him and that's what I do.

Interview with Dr. Kenneth Bock

I just stumbled onto this recent interview at the Atlanta conference. A reporter from Atlanta's Channel 11 spent 35 minutes with him. It is a really in depth interview that covers latest thoughts and methods in the treatment of autism. I got more answers myself by watching this interview, and he's our doctor! He mentions the creation of something called the 4-A Foundation which is supposed to be a way to help families meet the expenses of treatment. He said families should not have to be rich to see a DAN! doctor. Thought you might like to see.

http://www.11alive.com/video/player.aspx?aid=83522&bw

Now for Something Completely Different

Since I have grown weary of talking about autism, the following is a list of medical transcription bloopers that has circulated for awhile, but since I am in the profession, I still get these sent to me from time to time by co-workers. Believe me, transcribing for hospitals across the country every day, I have seen even worse, not to mention some of the wild things doctors say on tape. It provides for a rather interesting window into the medical profession, and one which, on some days I would rather not have access to! Some days I just howl with laughter as I sit quietly in my office and transcribe.

Here are some mistakes made in medical charts by transcriptionists, some are funnier than others:

1. "Bleeding began in the rectal area and continued all the way to Los Angeles."
2. "Patient came in today complaining of chronic vaginal affection."
3. "Since she can't conceive I've sent her to a futility expert."
4. "Surgery will be performed under General Anastasia."
5. "I saw your patient yesterday, who's still under our car for physical therapy."
6. "I've asked him to call and let me know who he's feeling this week."
7. "There was some concern about financial matters, but the patient was told she could apply for pubic assistance."
8. "After her last child she had her tubs tied."
9. "Infection resulted after she pimped a few popples."
10. "Rectal exam reveals normal-size thyroid."
11. "Social history reveals this 1 year old patient does not smoke or drink and is presently unemployed."
12. "Patient called and left word that he had expired last week."
13. "When she fainted her eyes rolled around the room."
14. "While she was in the emergency room, she was examined, x-rated, and sent home."
15. "Prior to surgery she was prepped and raped in the usual fashion."
16. "He's rather sedentary and drives a bust all day."
17. "This chubby youngster needs a slim adult to look up to as a role model."
18. "Both her old and new noses have been placed in our album."
19. "I keep reassuring her that her memory will improve, but again today she forgot to pay her bill."
20. "Exam of genitalia reveals that he is circus-sized."
21. "I told her that for the time being she'll have to bare with me."
22. "His prognosis was poor, having a massive cerebral hemorrhoid."
23. "He's a ten month old male who called on the day of admission to complain that his asthma was worse and he still has left otitis media."
24. "Patient is to remain plastered for the next 6 to 8 weeks."
25. "She got my instructions messed up and cut out all exercise and increased her sweets."
26. "Following the exam of her breasts we discussed the impending nasal surgery."
27. "...large brown stool ambulating in the hall."
28. "The patient was discharged in stale condition."

Finding The Words

This is the name of a documentary about children with autism who have recovered. I was sent this short version by a friend. I told her I cannot get enough of seeing stories like this to fuel my fire in continuing on our biomedical intervention. It's nice to see Jeff Bradstreet, Amy Yasko and Andrew Wakefield talking around a round table with other neurologists. I would love to see the full movie.

http://youtube.com/watch?v=tsjx0Lo05z4&feature=related

My son is 5 years old and has no speech, just sounds, although he tries to say Daddy, cracker and sometimes "ch" for chip, there is no real talking involved. I think perhaps that I could better accept all of the quirks and uniqueness (see previous post) of my child if I could just have some kind of dialogue with him. I have waited all of these years for it. True, we communicate on many other levels. Am I wrong to want him to speak and understand me so badly? It seems only natural. It seems, too, a sad irony to have a child like him in such a loquacious family.

Liberty was recently sick and I suppose that it is at these times, when he does not feel good and can only cry, that this desire in me is really intensified. There is nothing worse than not being able to comfort your child when you do not know what is wrong.

I do have hope that my son will talk one day. His brain seems to be setting up for it as evidenced by doing puzzles and using some signs for objects. One woman who made a comment on the film said her daughter is beginning to talk at seven years old after starting the biomed intervention.

I just have to get used to the idea that Liberty is not going to do things "on time" like other neurotypical children. You would think that I'd have gotten that by now, wouldn't you?

Quirkiness or Toddler Phase?

I don't know why Liberty doesn't understand that you have to take your clothes off to get into the bath. He just took a bath, got into his pajamas, and them apparently got the bright idea to go and get all of his planes, trains, and automobiles and get back into the bath with them. Behind him you can see something silver. That is the cheese grater from the kitchen gadget drawer.

Sigh.

Some things are just beyond my understanding, I guess.

Mercury Amalgams

I am posting this at the request of a friend mine, as a matter of fact, one whom I met through my blog. She used to work as a dental hygienist. I had four mercury amalgam fillings when I got pregnant with Liberty. I then nursed him for two years. Two years prior to Liberty's arrival, I had four root canals and four crowns. I am not saying that this is what caused his autism, but wondering aloud, if mercury from my leaking amalgams set the stage for the mercury from his vaccinations to tip the scales. I have avoided this issue since the last time a dentist as well as Liberty's neurologist basically looked at me like I was some kind of neurotic fool to even entertain the idea that mercury amalgams were bad for me or in some way connected to my son's autism.

Here is a very interesting website regarding this issue. Thanks Cristine!

http://www.dentalwellness4u.com/mercurydetox/autism.html

Also, here is a link to the site of Stan Kurtz. He is a parent of an son with autism whom he recovered himself through his own research. He also discovered a way to recover himself from ADHD. He is a regular presenter at the DAN! conferences and, apparently, is well-respected. I posted before about the research he has done on the virus connection to autism. His website is incredible and I have not yet had time to go through all of the information and videos. I am very interested in what he has to say about the benefits of MB12 for many chronic ailments.

You have to scroll way down the page to find the video on mercury amalgams. After watching this video, I am convinced I must get these fillings out as soon as I can.

http://www.childrenscornerschool.com/recoveries_new.html

Are fevers a clue?

I just read a post by my friend Cathy Jameson over at The Age of Autism ( http://www.ageofautism.com/). She observed her son behaving more normally when he got a fever and chicken pox. Someone made a comment that these kids who suddenly act "normal" when they have a fever are called "viral kids."

Is being a viral kid a clue to treatment?

I read another article by J. B. Handley (founder of Generation Rescue) over at The Age of Autism that many parents of children with autism are using a combination of Valtrex and Diflucan with outstanding results. The article said that Nystatin often produced undesirable results. You can check it out here: http://www.ageofautism.com/jb_handley/index.html

Hmmm.

All of this has me wondering if the fever that Liberty has been experiencing this week has been the catalyst for his sudden ability to complete puzzles and increase his ability to almost say words.

I remember when he was two, he caught a Rotavirus. He threw up so much and afterward he seemed so much more normal to me, even picking up new foods and eating them. I asked a doctor about my hunch that perhaps whatever he had in his gut, such a a virus, was temporarily depleted and caused his behavior to improve. They told me no, that of course he was going to be hungry and eat new things since he had nothing in his stomach. I accepted that, but always had that little gnawing feeling that something significant happened we were all missing. This was way before a DAN! doctor and when I was just starting to get a clue about leaky gut syndrome and the gut-brain connection.

If anyone has any experience with this, please post a comment and let me know. This is all new to me. Our next follow-up appointment with Dr. Bock is December 13, so I would like to add this to my list of questions for him. I can't shake the feeling that somehow this is important to know.

Puzzling Progress

I am happy to report that Liberty just made some huge strides forward - last night and this morning.

Poor little guy has been sick most of this week that he has been off from school for their Fall Break. But, suddenly, last night he did two puzzles that he had had no interest in before. One was number 0 through 10, the other one was a more complicated one of pictures of tools. These puzzles have 10 to 12 pieces.

This morning, he could do ALL of his puzzles he has had for the last two years. Perfectly. With only one or two prompts when he could not get the piece turned around properly.

I could not believe it. What happened? We were never really "working" on puzzles since he was so easily frustrated or not interested. I know he does some puzzles at school. But it has always been hard for him to maintain attention. He is so easily distracted, he would hold a puzzle piece in his hand and then look away at something else. Or, he would grab my hand to put the puzzle piece in its proper position. I always had to say, "Look at it." He needed lots of assistance.

Not this morning. He took each puzzle piece, looked at it, looked at the puzzle board and put the pieces in one after the other, perfectly, as if he had done them a million times. His father and I observed in hushed, total amazement over our coffee cups.

Something is working somewhere; I don't know how, but it encourages us, once again, to Keep on Keeping On with what we are doing!

Happy Thanksgiving

Count

Your

Blessings!

Thanks, Bernie

Today is the anniversary of the passing of Dr. Bernard Rimland, hailed the "father of autism research." We owe so much to this man. You can read about him here: http://www.autism.com/ari/rimland/rimlandobitarticle.htm

Vaccinations at Gunpoint

I received this from one of my biomed groups I belong to this morning. This is shocking and I don't understand how they can get away with it.

http://www.newstarget.com:80/022267.html

Buy A Turkey You Can Handle Video

You've probably been emailed this 1,000 times, but in case you missed it:

http://www.youtube.com/watch?v=a_Iqf7m8xKU

Dr. Bock on Montel TODAY

I just happened upon this information that Dr. Kenneth Bock, our DAN! doctor, is going to be on Montel Williams show today. He is supposed to have one of his patients he treated. Should be interesting. You can check listings here if you are interested: http://www.montelshow.com/

Nov 13, 2007
Kenneth A. Bock, M.D., author of HEALING THE NEW CHILDHOOD EPIDEMICS:Autism, ADHD, Asthma, and Allergies, will appear on THE MONTEL WILLIAMS SHOW on Friday, November 16 (check local listings for station and time),to discuss his biomedical approach to the treatment of autism. He is joined on the show by Tracy Fox and Tina Dula. Tracy's son, Ethan, has been successfully treated for autism under Dr. Bock's care, showing dramatic improvement on a gluten free/casein free diet and nutritional supplementation. Tina Dula, of Roswell, Georgia, seeks Dr. Bock'sadvice for treatment of her son, who has been diagnosed with autism. The program discusses the effects of autism on family, outlines Dr.Bock's Healing Program and offers advice to new parents who are concerned about the meteoric rise in autism.

The Art of Multi-Tasking or Be Here Now...and Here... and Here

I always thought I was good at juggling several things at once before I had a child. Most females are. And, let's face it, being able to multi-task comes in handy when you're a mom. In fact, it's actually a prerequisite if you're going to cope with all of the new responsibilities that come with motherhood. But, when you're a mother of a child with autism, the ability to multi-task sometimes borders on the ridiculous.


Case in point: My sister called me yesterday to chat. When she asked what I was doing, I casually said, "Liberty just got home from school and I'm changing his clothes and getting him a snack, then making a pot of chili for tomorrow, and oh yeah, I have to saute the fajita filling that is marinating in the fridge for dinner tonight, and um...oh, yeah I guess I have to make graham cracker dough since it looks like Lib is out of his grahams...yeah but then I have to get back to work, today's my invoice day you know..." Long pause. In the meantime of picking up the phone to answer it, I also had just emptied two garbage cans and was pulling out some cleanser to clean both tubs. My sister says, "This is not normal." I said, "Normal left the building 5 years ago."

She was in the middle of asking me how my cold is and I am telling her how it is hanging on and I can't seem to get rid of it...by now I have walked into my son's room where I see he is climbing his bookshelf. Before it fully registers, down the bookshelf starts to come. I throw down the phone and dive for my son. He is okay, but everything is in a shambles. I pick up the phone and sit down in the rocking chair for two nanoseconds to catch my ragged breath.


I finish my conversation with my sister and walk towards the kitchen. I pass my chair in the living room with the books from the library stacked on the table beside it and and gaze at it longingly. The next thing I hear is a crash in the kitchen. I run, but it's only Liberty emptying his cars and trains on the stone floor. My nerves are shot out. So are my adrenal glands, I'm sure of it.


I throw some bacon in the microwave for Lib, throw some clothes in the washer, get the clothes out of the dryer, and get ready to start dinner. But, then I remember I have to get Liberty's supplements for the second half of the day so I get out my mortar and pestle and begin to blend and grind and mix like the true kitchen chemist that I am. I get out my syringe to begin to give him his doses (without the needle...this is really the only way I can make sure he gets the correct dose). All Lib sees is Nurse Ratchett coming towards him and he flees. I now have to catch the kid to give the supplements which will require giving him one, then going back in the kitchen to reload the syringe with the next stuff, all the while going to my notebook and making sure I WRITE ALL OF THIS DOWN so as not to forget what I have given and what I have not. He only has 13 supplements, some to be given twice a day.


Since my son is currently non-verbal, he usually grabs my hand or face and looks at me and drags me to where he wants to go and this kind of behavior makes our time together rather like a slow dance. I fall into a kind of trance after awhile, tired of hearing the sound of just my voice as I ask the same old tired questions over and over again that he never answers. He is getting better with signs and his eye contact has greatly improved, but he is still easily distractable and that rubs off on me. I cannot tell you how many times in a day I will be in the middle of my juggling act and I will stop and think, "what am I doing again?" I am starting to suffer from short-term memory loss just like Dory. "Hello. Can I help you?"


Before you know it, it's Lib's bath time, find the pajamas, figure out what he will eat for dinner, catch him to brush his teeth and get yet another bedtime supplement (zinc). I catch a glimpse of myself in the reflection in the window as the sun is going down...remember...me? I smile at myself and wave. Someday very soon...I'm taking me for a long-overdue massage.

Challenges

We've all had either the flu or a sinus infection recently so I have not had the energy to drag myself to my blog. Liberty has rallied through it all in the last week and I think I might start taking what HE is taking because certainly his immunity seems to have really been boosted this year. Last year he was sick all of the time, it seems.

Sunday, I performed his Urine Metals Challenge. Before we can begin chelation of heavy metals, we have to do a metals challenge to see if he spills metals and, if so, how much. I collected urine before I gave him one pill of DMSA, and collected all urine for six hours after giving him the pill. I have always thought he was metal-poisoned, and, apparently, his doctor thinks so, as well. At least that is the direction in which we are now headed.

Unfortunately, Lib is not yet potty trained, so I basically had to follow him around with a cup all day. He had all of his toys in the living room with The Wiggles playing over and over again. He had a ball. I blew my nose, drank coffee and held my cup expectantly. His father slept off the flu in bed most of the morning, and if he got near Lib, he was ordered to wash his hands and dip in disinfectant every 10 minutes. Lib's doctor does not want him taking any antibiotics. We were given something called Thimactive to take in place of antibiotics, and Oto-Plex if he gets an ear infection; both homeopathic medicines. I do not know how well they will work, but I have come to love homeopathy. Liberty has done very well on his cough syrup and drops which are homeopathic and made by NatraBio. I pass this information to everyone I meet because it still amazes me how well they work.

After the long morning that turned into afternoon, I finally got a shower and we took off to get some fresh air. We went to the Blackwater River and watched the boats go by for awhile and then went to the grocery store. I thought I would dream of the Wiggles and their toot-toot, chugga-chugga Big Red Car, but, thankfully I didn't. It was lights out for me as soon as he crashed for the night around 7:00.

The two urine samples were picked up by DHL this morning. Sixty bucks a piece for the pre- and post-challenge tests. The next thing on the list is the urine porphyrins and urine pterins test from the big lab in France (http://www.labbio.net/pages/index_vh_eng.htm). It's a really interesting website and I suppose one that parents have used themselves without a physician. I am not really sure what else these will tell us except it has something to do with toxic load. These two will be $200 dollars plus the express mail if I want to get the results back in time for our follow-up appointment. By the way, the one pill of DMSA was 40 bucks.

I am sending everything into our insurance company and I must say they are paying for some things but it is hard to keep track of what in particular because they break everything up. For example, there was a metabolic panel that was done and it was $800. They took all of the tests of that one lab and divided it up. I have not been able to actually see the logic yet. A nurse of the DAN! doctor we go to said that if they pay for something be grateful because if you start questioning, they flag everything you do from that point on. Someday this won't be such a struggle for parents.

I am particularly interested in what these tests will show since, my theory will either be proven right or wrong. I am sure that Liberty has been able to detox a lot through other things we have done for the past few years such as Epsom salts and supplements, the MB12 shots, etc. If we find that there are no metals, which I highly doubt, but if we do, then it will be a whole new ballgame because there is some comfort in knowing that if we find metals, we know what to do about those. But, if the result does turn out to be negative, I will have to find new paths to explore. Well, after all, that is why we got the DAN! doctor in the first place. We need someone to help at least guide this ship, and one who listens to parents. Dr. Bock respected the work I had already done and knowledge I had gleaned on my own. He expected it. He knows that when parents come to him, they have already been digging on their own for information.

It's nice to have a doctor who doesn't look at you like you are from Mars each time you open your mouth. That's refreshing.

Ages, Stages, and Objective Reality

I cracked up laughing over the post for today on Whitterer on Autism. If you haven't found Maddy's site yet, you might want to give it a look. http://whittereronautism.com/

She brought up the fact that we forget that not all behavior stems from autism. Some of it is just due to the age of the child, or the individual personality, or moving through milestones, etc.

This made me think of something else related along these lines.

A friend of mine was talking about her young son whom she has recently begun on the DAN! protocol. Her son is a couple of years younger than my son. When she tells me things that he does, it takes me back a few years. I realized how much I have forgotten that Liberty does not do anymore! Now, I see he was going through stages. At the time, I was just in pain thinking that his behaviors "would never end."

Wow, guess what? They do! And, the great part is, I can tell her that with confidence.

Though, it is true that not all children are the same and certainly not all children on the autistic spectrum are the same, they still go through their milestones, too. We just don't notice them as such because they are usually delayed. Sometimes treatments help move them along. I know when I first put Liberty on cod liver oil, I saw huge changes in eye contact. Then I got used to that level of eye contact and forgot how bad it used to be.

Our kids change before our very eyes every day, but we parents of special needs kids, we have the zoom lens pointed at them at all times each and every day and by God, we miss it. Until, that is, some kind soul comes along and points it out to us.

Were it not for people who know me and my son saying, "God, Kathi, he could not even do that last year, don't you remember?"

Hey, people, I don't! I'm too busy focusing on my son's progress under my time-lapse-photo lenses, so I perceive us to be in slow motion.

Lately, I have focused on Liberty's speech or rather, the lack of it; however, I do see that he is really begining to exhibit behaviors that are more appropriate for the NT kid, and that would be looking at a book instead of flipping through it quickly and throwing it over his shoulder; kicking a ball; playing with cars and trains instead of lining them up - although he still does that, too; loving to be outside and with other children; showing appropriate reactions and emotions when watching a video, and not putting as much stuff in his mouth like he used to!

Thanks, Maddy, for the topic today. I just had to post about it!

Halloween Success

I am so proud of my boy. Not only did he keep a collared shirt on for the

first time in his life, he also kept his Dracula cape on. He even twirled in it! Our neighbors had a graveyard and fog set up in their front yard and I have lots of pictures of Liberty sitting next to headstones surrounded by fog. But, the main thing is that this year he "got it." His dad took him trick or treating while I stayed to hand out candy.

His dad reported that, not only did he hold his trick or treat bag out for candy, he tried to say "trick or treat!" At least he got the syllables right!

I cannot tell you how HUGE this. This is progress, folks.

My heart is full.

French Onion Soap

I've just had one of those squirrley days where I've gone to too many stores, forgetting too many things, all with Liberty's constant efforts of speaking in the background. Although I am grateful for THAT, it does tend to wear on one's nerves. Each time I have come back home today to "get something done" (such as laundry, cooking, cleaning out the refrigerator, etc.), I turn around and there's Liberty with my purse and keys in hand, making the sign for "go," which, if you are not familiar with that sign, is just making fists with both hands and rolling your hands one over the other, kind of like cheerleaders do. Anyway, he does it in a clumsy sort of way that makes him look like the robot from Lost in Space. All I can think of when he does it is, "Danger, Will Robinson!" I guess that memory dates me. It's very precious and I can hardly deny him anything when he does it.

Anyway, I finally get home and am working on a fabulous onion soup. Liberty has gone out in the backyard to swing by himself. As I am making the soup, I think that it would be fun to blow bubbles in the backyard this afternoon as it's kind of windy and the Gymboree Bubble Oodles are really cool when blown outside. Liberty desperately needs a playmate but, unfortunately, I happen to be it these days.

As I am making the soup, I put a bunch of condiments that go into the soup in a plastic cup and set it aside. As the onions are sauteeing in the butter, I go get the Dawn dishwashing liquid and pour it in a similar small cup since I can't find the tray that goes with the bubble wand, and we always run out anyway, so I think I am being so smart by taking a cup of Dawn with me to blow bubbles outside.

Continuing with my soup, I pour the boiling water on the onions and am ready for the last step. I grap my cup and pour what I thought were the condiments into my soup. But no! My onions are turning a beautiful shade of royal blue! I almost get the spoon and continue stirring until I realize that I have just poured a half a cup of Dawn dishwashing liquid into my lovely onion soup.

So...I trudge out to the swings and make the sign for "go." Lib happily slides off the swings, runs in the house and gets my purse and keys. Out the door for the fourth time today (for yet more onions). I wish there was a prize for most frequently returning customer because we'd win it hands down. If there was a trolley to Winn Dixie, I bet I'd be on it every 30 minutes.

This damn soup better be fabulous tonight because I'm almost too tired to stir!

Happy Weekend!

This is what happens when you rub your nose against a black mailbox. Kind of gave me an idea for a Halloween costume. Perhaps a chimney sweep? We cannot wear any masks or hats, since he will yank them off. I'm going to let him go trick or treating with other kids this year and hold out a bag even though he won't eat the candy. I just want to steep him in the traditions of the year, whether he gets it or not. One day, he will.

I got a call from Liberty's teacher this morning. She always prefaces her comments by saying, "Don't worry there's nothing wrong." She did say that she thought she should call and tell me that Liberty got off the bus, walked into school without assistance, hung up his backpack under his name, took off his coat and hung it up, and waved to the teacher at the desk and smiled. His teacher told me she thought that this event warranted a phone call. I wholeheartedly agreed!

We parents need to know about as many positive happenings as possible. Liberty's teacher and assistants are a positive part of our Support Team and often at the top of my gratitude list.

Leaving Normal

"Normal" at Our House

OR

Ten Things that Don't Freak Me Out Anymore But Probably Should:


1) Spatulas, whisks, or other kitchen utensils in the bed, especially under a pillow.

2) Meat thermometer in the bathtub (yesterday). Cheese slicer in car seat (today).

3) Ghostly brown hand prints that won't come off the wall but must be painted over from those not-so-long-ago crapisodes, or covered up with an attractive wall hanging.

4) My make up and nail polish neatly lined up on the vanity. (That'll spook you out late at night).

5) Liberty preferring to play with a clothes hanger rather than a toy, and, at times, insisting on carrying said hanger everywhere we go.

6) The coveted fridge with ice maker and water-in-the-door - not such a "swell" idea anymore.

7) Bedspreads, sheets, and pillows yanked off all of the beds in the house make dandy trampolines.

8) Bacon is a lollipop. (I've gotten used to the look of utter disappointment on the faces of the people at the bank who try to give him suckers. I just take them and say thanks like he will have it in the car like Boy Normal, rather than going into the whole autism spiel. I have a whole bin of Dum Dums at home. I hope they don't see him playing with the cheese slicer in the backseat).

9) My child of nature in the backyard on the swings, stripped down naked, enjoying the rain.

10) Liberty preferring to play with my statue of Kwan Yin (the goddess of compassion) which he adores because her hand comes off (you're supposed to hold it and pray).


Oh, I do love my little Liberty. He cracks me up when I am getting too serious for my own good.

“Reality is the leading cause of stress amongst those in touch with it.” - Lily Tomlin

I'm sick of thinking about food!

It's quarter of 10 and I'm just finishing my long day on the Johansen Ranch. Liberty's school had a teacher planning day so he was home with me all day. He played with his trains and cars on the kitchen floor while I slaved over gluten free/casein free bread, gf/cf cookies, and lots of vegetable puree that I plan on using in Jessica Seinfeld's recipes. If you did not catch her on Oprah last week, she has come out with a cookbook in which she sneaks different vegetable puree into lots of standard recipes that kids love. For instance, she has brownies that contain carrot and spinach puree which, according to the Oprah show, kids ate them and said they were the best brownies they had ever had. Getting Liberty to eat a brownie or anything that does not crunch could be a challenge. I, however, am up to that challenge. I just want to start offering more food that he can have, whether he eats it or not. At least I will have presented it. That's the theory anyway. Jessica Seinfeld has a recipe for chicken nuggets in which she first dunks them in a vegetable puree before coating them with a bread crumb/flax seed mixture. There are lots of free recipes on Oprah's site and instructions on making the purees, if anyone is interested.

I have collected a hodge-podge of recipes off the Internet and various autism-related books, and from other moms whose kids are on the diet. I'm trying to come up with other meals. I make homemade gf/cf graham crackers that turn out very well. Lib was addicted to those Honey Maid grahams, so that was the first thing I did - replace his addiction with something he could have. I've made so many, I could probably roll them out blindfolded. Other than that, Liberty eats pot roast, spaghetti, chili beans and uncured bacon and chips he can have. Of course, all is organic, antibiotic free, hormone free, "pristine" stuff.

After checking off my list of 13 supplements he is supposed to have, then getting him his bath and into his pajamas, going out for a quick jaunt to the library, getting him to bed and cleaning up the disaster area in the kitchen, I still managed to make a homemade pizza. How does she do it, you ask? Stresstabs. Maybe a little wine. Stupidity? Should have ordered it all, perhaps.

I am grateful for this rainy day at home with my boy, though. He said, "Tiguh" after I pointed to his very large stuffed white Indian tiger in his room. And, the sweet boy shared his chips with me this afternoon.

Yep, it was a good day at the ranch.

Giant Baby Steps

I suppose this is more of a journal entry than a blog post but I just wanted to give a shout out to the world, or at least to those parents in the blogisphere who can appreciate this, that my son began waving bye-bye today for the first time in his life. He's five years and three months old, so you can do the math and figure out how long we have been waiting! Exciting stuff this is. He even waved bye-bye to the Koala Brothers video tonight when we were done.

Earth Angels

Sometimes the "little" things in life become the really big stuff. Like haircuts, for example. My son was badly in need of a hair cut and I had to wait longer than was comfortable for him, just to get in with one particular woman who happens to be skilled at cutting the hair of special needs kids. She can weave and dodge and float like a butterfly around Liberty and get that kid's hair looking great. Though there is much screaming involved (the poor tike always thinks he is being held down for yet another blood test), she always has a smile for him and is very kind and soothing. I told her today she is "GOLD." She doesn't really understand the impact she has in this mom's life. Our afternoon went rather smoothly because of her. There was no apologizing or sweating, or exhaustion upon returning home. I just sat Lib on my lap and his shorn hair covered both of us. We got up, he changed into a fresh shirt I brought and we're back home in two seconds like we never missed a beat (she is just down the street!).

No, she will never fully understand, but she is an ANGEL in my book.

Blame it on Mercury in Retrograde

An update on my experience with Dr. Bock and the God-awful follow-up appointment:

Dr. Bock's nurse called me today and she was extremely nice. I asked her about the state of affairs in the office and she said it was so hectic that they are hiring new people. She said she is already working 16 hour days and they will all have to start working weekends because of the patient load. Even Dr. Compain, the assistant, is getting overloaded. She said all appointments go over what they should because Dr. Bock takes time with people.

I am going to give them the benefit of the doubt, that perhaps since the book came out in April of this year, the amount of people flocking to their medical center has been more than they ever dreamed, and is definitely more than they can currently handle. Maybe it will get straightened out with the more people they hire.

On another note, I realized that Mercury went retrograde today, but you can feel the effects of its presence five days before and the tail wind five days after. Scoff if you must, I have witnessed the effects of Mercury each time it goes retrograde. Communication just gets totally screwed. Kind of 'splains a lot about my week in retrospect. I bet there are others who can attest to the old Mercury one-two punch.

Come to think of it, I have lots of reasons to despise Mercury. In fact, the nurse told me 2 kits will arrive next week for Liberty's formal metals challenge. I have to collect urine for six hours, which will be quite a "challenge" for Mom as Lib is not potty trained. I don't think he will wear a urine collection bag, so I guess I will be following a naked child around for six hours one weekend. I think I will wait until Mercury is safely out of range before Mom attempts this one.

The fun just never stops.

Perception

I saw a segment on a morning show about a woman with multiple personalities. What I find interesting about the multiple personality or dissociative disorders is that each personality has a unique body chemistry. For example, one personality may wear glasses whereas another might have 20/20 vision. One personality might be allergic to something and break out in hives which mysteriously vanish when another non-allergic personality emerges. And, all of this going on in the same body.

It just reinforces the idea that MIND controls the show.

I have had some emotionally charged days in the past few months, nothing really new, but I have watched the way that my perceptions determine whether I will feel good or not. I cannot always get a handle on it right away, but when I am upset, realizing that I am simply reacting to my thoughts about a situation and nothing more makes it possible for me to make it through some hard times.

Because my son has autism, there are days when I'm up and days when I'm down and I wish I could reach a steady state about it, but I realize that I just have to roll with it. The simple understanding that I can choose how I want to feel at any particular moment has been HUGE in my life.

I've been walking this road for four years now. When I get down, I look at Liberty through the "disabled" lens. When I am up about Liberty, I look at him as my precious son on his own path and see no dysfunction. Constantly going back and forth between these perceptions does make me feel like I, too, have multiple personalities. Actually, I guess we all do in a way...it just depends on what lens we are looking through at a particular time.

This is such a simple principle, but easy to forget. We let the world scare us. We are mostly reactors who were never taught as children that we could choose how we want to respond. I've been learning THAT one my entire life, way before Liberty arrived.

Telephone appointments and celebrity doctors

I finally had the long-awaited appointment with Dr. Bock on Monday. It was a sort of fiasco in the beginning as the good doctor was over an hour and a half late calling me. My appointment was for 3:20. I phoned the office at 3:45 to make sure everything was okay. I could understand him running a little bit late. Ten minutes later, his nurse calls to go over medications. She spends 3 nanoseconds with me and says "Doctor will call when he is ready."

By 4:37, I am now quite angry. I had my mother-in-law over trying to keep Liberty occupied who was becoming more and more upset that he could not be in the room with mommy where I patiently sat by the phone with all of my questions waiting...and waiting...and waiting. I pick up the phone at 4:39 and apparently, while I am calling them, the nurse calls me and the call goes straight to my voice mail. She swares she left me the after hours number (apparently his office closes promptly at 4:45). Picture me frantically calling the office number, getting the recording that means they have all gone home, and leaving messages. At this point, all I could feel was desperation. I realized at some point while I was calling the office and leaving messages, she called again and left another message with the after hours number on it. (I think she covered her butt at that point). Finally, I check messages again and there it is, the correct after hours number no one had thought to give me from the beginning. So, it is now almost 5:00 pm. I call up there and get through to the nurse. She is extremely curt with me and tells me that"...well....it will just be a quick appointment." I hit the ceiling. "Not for $400, it won't be! Put me through to Dr. Bock immediately!" I just snapped like a dry twig.

Dr. Bock gets on the phone and, though he is not nasty with me, begins telling me how he has been waiting. I interrupted him and said, "No, Dr. Bock, I have been waiting for you for almost two hours." He begins to patronize me, saying what an important follow-up visit this is. I was practically in tears. (Picture Liberty now bursting into the room, mad at grandma for keeping him away from mommy so long, stark naked, having ripped all of his clothes off, hungry, and climbing on me). I said, "Dr. Bock, I am not going to be portrayed as some slacker. I am well aware of how important this appointment is. I've been waiting for two months to talk to you, and patiently waiting by the phone. I have phoned your office at least eight times," and on it went. Finally, he said, "Well...let's do this thing, but we have to be focused." I told him thanks and we had our appointment.

(I could tell you more about the telephone crackling and my fear that the battery was going to start going dead...beep....beep...beep).......

We ended the visit on an upbeat note and he was very cordial. The next day, I called the office to make a follow-up visit for 4-6 weeks. This is what the doctor prescribed for us. The receptionist informed me that there is "no way in hell anyone can get a 4-6 follow-up appointment anymore." She said she did not want to talk badly about the doctor BUT he just doesn't understand how slammed they are. I asked her if this was due to the book and tv appearances and she said yes. His entire staff is so stressed out, that, if the doctor was not as good as I think he is, I would be changing offices. But, I do still like him and I do need his expertise for my little boy. I will have to buck up against his office staff and get through it.

As far as the results of the tests, I should have been jumping for joy, but the fiasco of the whole visit eclipsed my good mood. I did find out that Liberty does not have to go on yeast-free diet! Thank God. In fact, his labs looked pretty good. He was low in a few things like iron and Vitamin A, and we have ordered some new supplements to help in those areas. I am still keeping him on a gluten free and mainly casein free diet, although I have reintroduced a good yogurt and so far, so good. I think he went through a yeast die-off when we began the diet five months ago. Had I gotten labs done before we started anything, we more than likely would have seen something different. No pediatrician around here would even understand what I was talking about if I asked for labs. They barely understand the gluten free diet.

We are supposed to get a urine porphyrins test from the lab in France. I have not checked that out yet and am wondering how much it costs. This has to be done before we order the chelating agents for heavy metal detoxification which is the direction in which we are headed.

The bottom line of the conversation with Dr. Bock is that Liberty is on a good road, that we are indeed pointed in the right direction. The MB-12 shots are helping tremendously. When I looked back over the meticulous notes I have kept since beginning the shots, I can see immediate effects. He said four words in speech therapy a few days after the first shot. His eye contact is immensely better, he is more easily engagable, he SLEEPS THROUGH THE NIGHT PEOPLE! This mom did not get any uninterrupted sleep for a good solid 3 years. THREE YEARS. This is also partly due to the diet, I'm sure. He is eliminating so much better, eating better. (The oral stimming is a bit less, but sometimes he still licks the car or a doorknob. Yuck). I even get long notes home from the kindergarten teacher about all of the new things he is doing.

So, today, I am sitting in a place of gratitude. You all know the road, you've been there or are still on it. It has gotten better and looks like it will continue to get better. There's been a lot to do and we are exhausted but now we are getting just a little measure of distance where we can relax at least a bit more.

My boy just turned five a few months ago, and, if you stand him next to a neurotypical 5 year old boy, the most glaring diference is that he is not talking or not talking normally, rather. He now says patterns of sounds and a word or two will pop out now and then.

Just recently, I went to Barnes and Noble. I should know better not to take myself to places right now where there is the potential to scare myself and get down about Liberty's progress. There were two little boys playing in the kid section around the Thomas the Train set. Liberty went over and grabbed a train to play with. At first he ran it around the track. Eventually, he wanted to be near the boys and the big pile of trains that they were playing with. There was a point where he went over to them smiling, uttered his gibberish, and tried go join in. The other boys stood back and looked at my angel of a son with looks that said, "What are you?" It just crushed me inside. I hurried out of the store before I plummeted any further. I just couldn't handle it.

I told Dr. Bock about how I thought Liberty was beginning to progress through his milestones, picking up where he left off at 13 months after the MMR. In fact, he is doing many age-appropriate things. The language delay is the most severe thing we have going now. One of my sisters told me that she thought he is in the beginning stages of language. He has said different words at school and is even picking up signs as well as picture cards. (And I am so grateful for a wonderful teacher and experienced teaching assistants and only 4 kids including Lib in the entire class. They do a lot of inclusive teaching, too). He is a very even-tempered, sweet child, but the frustration of not being able to communicate all of his needs is growing.

Dr. Bock told me that I should not expect him to immediately start talking in full sentences after a couple of months of MB12 shots (you know the stuff you read and the videos you watch). He told me to avoid comparing him to any neurotypical kid and stop torturing myself. His final sentence to me as we got off the phone was, "We're in a very good place, he's made great progress, and let's continue to heal this little guy."

I am now only thinking about my son's well-being and those thoughts and actions that increase well-being. I search for thoughts that bring relief. When I have found them, that is what I focus on. Obviously, going to Barnes and Noble at this point in time is not something that brings relief!

Getting into the new habit of consistently reaching for thoughts that provide relief allows well-being to flow. This is what I want the most for me and my son: To stay in our well-being, in that good feeling place. There is no fire that has to be put out today. No emergency, just a steady pace of putting one foot in front of the other and enjoying each day we have together.

I finally called the office back this morning and told the woman at the front desk that I would like to go ahead and make another appointment 6 to 8 weeks from the next one in December. I was suprised I got an appointment. It's for 7 PM on a Tuesday night. (She told me there are no morning appointments from now until eternity) I asked her if she thought he'd be two hours late on this one. She said it's possible.

Hey, maybe 9 PM is the best time to have an appointment. It will certainly be quiet in the house and I won't have to get a babysitter.

Montel Jumping In

MONTEL WILLIAMS LOOKING FOR RECOVERED KIDS

Thu Oct 4, 2007 7:43 pm (PST)

We're looking for moms who have "cured" their children with autism. Though there is no cure per se, we're looking for success stories like Jenny's of moms who've been able to turn their child's autism around using treatments that they've found to work, though they may not be sanctioned by the medical establishment. Basically, moms who have taken their child's medical care into their own hands because their pediatrician has been unresponsive, unwilling or just uninformed on autism, so they've been forced to become their own M.D. in a sense. You could forward any interested moms my contact info: phone is 212-830-0341 and email is s_maldonado@...This show is scheduled to tape in NYC on Friday, 11/2 at 11am. We fly in guests the night before, put them up in a hotel, and then have a car service take them from the hotel to the studio day of show for the taping. The taping would wrap around 12:30 or so, then everyone could head home.In terms of children, anyone under age 12 is usually not an in-studio guest, though we would like to film the child and parent(s) at their home and do an interview prior to the show taping. This would happen at the guest's home on a day and time convenient for them.Thanks again so much for your help!I'll be in touch with additional questions, I'm sure!!Kind regards,Sylvia

Sylvia Maldonado
ProducerThe Montel Williams Show423 W. 55th Street2nd FloorNYC , NY 10019Ph: 212-830-0341Fax: 212-262-4602