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

Canadian Study of Gut-Brain Relationship

http://www.cbc.ca/health/story/2007/09/27/autism-study.html

An emotional week

I'm very glad that Jenny McCarthy and Holly Peete got to have their say on national television shows in the past week. I was especially happy to see Dr. Jerry Kartzinel on the show, a DAN! doctor who joined the practice of Dr. Julie Buckley in Jacksonville, Florida and who wrote the forward to Jenny's book (and who is about six hours away from us). He and Dr. Buckley are conducting their own research and presenting it to the Think Tank at the DAN! conferences.

I think all of the publicity is positive. But, as I said in a previous post about how hard it was to actualy read Jenny McCarthy's book because it brought up so much of my own pain and struggle with Liberty's recovery, watching a lot of television this week has knocked me out of my comfort zone. I find that, when I am trying to achieve and maintain a steady state of serenity about my son's current condition and what we are actually doing each day to try and help him, I do better when I don't talk about it constantly. I find that I have to create a balance of knowing when I really need to reach out for support and need to talk or when I need to retreat, to pull my feathers in around me and conserve my energy. I believe I heard Carolyn Myss say that you have to ask yourself where and to what you are sending you energy out to. This is one reason I did not join support groups right away. They upset me more than they comforted me.

I also do not want to be called a "warrior" mom or fierce. At least not in the sense that I am going to take a banner and go and "fight" for my son's recovery. Fighting is not what I want. That is NOT the energy I want to cultivate. I believe in the power of attraction and if I think I have to fight, then a fight I will get every time. I want to promote instead of push. I want to teach instead of lecture. I mean, really, I think your approach to anything is so important in predicting the results.

There is no doubt I experience a lot of sadness. It just is what it is. There is no doubt that the CDC angers me a lot just because it is caught up in so much obvious bullshit. I'm not here to cram the vaccine theory down anyone's throats. I experience anger, too. But, I'm not going to carry that anger on and on and wear it like a banner. I have read the Teachings of Abraham for years, and one thing I have learned from those teachings is the way I am feeling is an indicator of whether I am allowing my well-being or if I am cutting myself off from its flow. If my thoughts are making me miserable (read that NOT the autism but my thoughts ABOUT the autism), then I reach for higher thoughts until I reach a feeling of relief. When I reach a thought that brings relief, I am back to allowing my well-being to flow. And, when I am in that state of mind, everything else falls into place and I can be the mother I need to be, the wife I need to be, and the best ME I need to be. The bottom line is I have to be very careful not to allow my emotions to run away with me.

I used to belong to Al-Anon and attend weekly meetings. One of their beliefs is that the meetings are not intended to be bitch sessions where you go in and gab on about the alcoholic in your life. Rather, the purpose of the meetings are to share your experience, strength and hope. That's the approach I want to take when I talk to anyone about autism. Mostly, I talk to other mothers who just want to know what I have tried, or are relieved to know that I have experienced the same range of emotions they have. My sponsor and dear friend used to always say, "put the focus back on you" when I had wandered into a fearful place.

So I am putting the focus back on what I want and foresee for my son's recovery and leaving that fearful place of what ifs and should haves. I will still be glad to read articles people send to me, will still be happy to sign petitions and primarily be involved in recoverying our kids. I will not fight, though. There are already too many wars: The war on drugs, fighting cancer, battling diabetes. Our words have power. We need a gentler, softer approach and I think that the gentler, softer path is actually the more powerful way, and more of an attractive magnetic force for getting what we want than slashing and burning our way through the forest.

What the $%&*(@?!!

I am sure I heard a collective gasp tonight around 6:30 PM.

I was listening to ABC News when all of a sudden there was a story about the CDC, how they just completed a study that concludes that there is no link to any danger of thimerosol. WHAT? And, to add insult to injury, they then said that it was a mistake to take it out of the shots.

Are you kidding me? If you are not outraged by this, I don't know what to say. In fact, I'm practically speechless.

I will eagerly be tuning into the Rescue Post in the morning to see what J.B Handley has to say about this. There was also a tiny mention about the fact that, of the 19 symptoms studied, none were specifically typical of autism. (This makes absolutely no sense to me when the parents of autistic children have been the loudest to complain about the thimerosol). The CDC also said they are doing a "new" study to address those issues specific to autism. Finally they are going to look at autism specifically and it was just mentioned as a postscript?

The timing is interesting, isn't it? It comes on the heels of the interview of Jenny McCarthy - first on Oprah, then Good Morning America, The View, and tonight, Larry King. Also, she and her son's faces are now plastered on the cover of People.

You can read the story here. I have to go sit down.

http://abcnews.go.com/Health/Germs/story?id=3655803&page=1

Mom Speak

This is a hoot - just a great laugh for today. I borrowed this from Carrie Wilson Link's site...this is for all of the mom's out there.

http://www.youtube.com/watch?v=w_oc1j5NakY

I am thinking of doing my own version of the things I say to Liberty all day long; although it would not be as funny because the things I say are so repetitive as I don't ever get an answer!

(Do you want a chip? Do you want a cracker? Are you thirsty? Where's your cup? Just one bite! Please? Good boy! Good job! No sir! I said NO. Do you have to go potty? What happened to your diaper? Where's your clothes? Put that down. Get down. I said now! Give me that spatula! Don't put that in your mouth. That's not to play with! Do you hear me at all? Do you understand? Pick up your crackers. Put on table. Pick up your bacon. Liberty, Liberty Liberty, mom's calling you. Time for your bath. Where are you hiding?

The Dailies

Time to get back to the dailies. After all of the hoopla and excitement around Jenny McCarthy's debut on Oprah, I need a little calm. I've been telling everyone about her. I even had a woman come up to me in the grocery aisle (where we were discussing the new Betty Crocker Warm Delights, Thank You God for these) and she brought up Oprah. Turns out she has a grandson with autism. Then another woman came down the aisle and began discussing her nephew. Pretty soon we were discussing not only vaccines but the pollution that is rampant in these parts. Living in Florida, we are notorious for companies polluting our waterways, not to mention air, with the lovely mercury-containing smoke that comes from the coal-powered power plants. All of that talk rattled me and made me want to pack up and move immediately. I need to find a "Green City" and one that has awesome teachers and therapists. Guess I better begin that quest now.

Anyway, I also began Jenny's book last night, and you know it's well-written, but it's always hard to read another mom's story and feel her pain. I just cry and cry. It's the pain of not being heard, or your baby being sick and doctors who just don't know what to do or who are callous and unfeeling, and, well, just plain ignorant about autism. Anyway, it's good to read and I wanted to read it, but, like all stories I read about other mom's struggles with autism, it brings the early days all back and puts me in a place where I get anxious over my son's recovery.

So, I have to put myself back in a place of positivity and look at all of the good things we have done for him, the progress he has made, and put myself back in the now where everything takes place, instead of fearing the future and crying over the past and what I should have seen and done.

I'm back to reading the teacher's notes, packing my son's lunch, giving him supplements, putting him on the bus with a smile, and thanking God that, for today, he's doing well.

Only two more weeks until we have our follow-up phone appointment with Dr. Bock and get the results of all of the tests we worked so hard to get. I can't wait for that!

And, the new season starts on TV: Dancing With the Stars (yes, I love it - my guilty pleasure), and the debut of Dirty, Sexy Money with my favorite Peter Kraus from Six Feet Under. It's also autumn and time to lose myself in some good books. I need Pat Conroy to get busy and publish his new book or I might just have to get Beach Music out and read it again. Also, Sue Monk Kidd (Secret of Life of Bees). These are two of my favorite authors. I'm always looking for a good read, so if anybody has a good book they've read, please share!

It's these little things that turn out to be the big things, the things that matter: Hummingbirds chasing each other, the goldfish in our old pond, dragonflies in blue and green, spiders spinning webs, mums blooming in my garden and the leaves turning colors. Yep, even on the Gulf Coast, we have a nice fall and it is always so welcome after the intense heat and humidity of the long, hot summer. Add in some good movies, good books and great food cooking on the stove, and I am truly in heaven.

My daily gratitude list and the above are the things that help me cope with hard times and bring me great comfort.

What's yours?

Talk About Curing Autism (TACA) Site

Check out Jenny McCarthy's video blog for new parents as well as another video called "Why Taca?"

http://www.talkaboutcuringautism.org/jenny/jenny-mccarthy-video-blog.htm

I think I will be utilizing this site more frequently. I still get down every now and then about Liberty's condition, and, as Jenny says on her video, "Surround yourself with hope." I agree.

Also, check out J.B. Handley's article on Rescue Post if you haven't already. Looks like the opinion that Jenny McCarthy did the autism community a great service is pretty much unanimous!

http://www.rescuepost.com/

GO JENNY!!

I hope you tuned into Oprah today. Jenny McCarthy did a fantastic job of representing all of us parents of children with autism. I was so impressed. Thanks Jenny McCarthy and Holly Peete for speaking out and doing it well. I was so glad the vaccine issue was brought up. I thought they both handled all of the issues of autism very well. It was a relief.

Perhaps our voices are reaching that critical mass...the 100th monkey phenomenon. Maybe soon we will get some REAL research going.

In the meantime, keep on keepin' on and don't give up hope.

Advice I wish I'd had...

When my son was first evaluated for developmental delay at 20 months of age, I had no idea what to expect. All I knew is that he was developing normally, then after his one year old shots (the MMR), there were comments from the pediatricians (I went through a few) that there were things he should be doing by now: Pointing, saying X-many words, looking at people, etc. The pediatrician we were going to at the time said that if we wanted to get an evaluation to rule out any problems, she would write a referral. She said it was a simple, easy thing to do and that the evaluation would take place in our home. I said, "Okay, why wait? Let's do it."

At this point, I really did not think there was anything wrong. I did not have another child to compare mine to. All of the other kids in the family were grown; I did not have friends my age with small children. I knew my child loved television, his pacifiers, and lights and spinning toys. The fact that he went from eating every kind of food I put in front of him to eating nothing but graham crackers was dismissed by one pediatrician as a "toddler phase" he would outgrow. Four years ago, we were just beginning to see the now familiar posters about warning signs of autism. We did not have the staggering statistics told to us back then. Now, you see the posters everywhere.

At any rate, unfortunately, the evaluation did not take place in my home. Instead, we had to go to a state-run developmental education center run by the hospital where my son was paraded in front of a panel of professionals: A psychologist, neurologist, occupational therapist, speech therapist, physical therapist, and the developmental disability coordinator. They were concerned that he did not stack blocks. We said he didn't like to do that. They asked me if he lined things up. He really didn't. They asked me if I was concerned he would put something bad in his mouth. I said yes, he was only 20 months old. They were concerned that he would not pick up a crayon or look at them when they called his name. I proudly demonstrated how I could get his full, undivided attention when I sang a Wiggles song to him.

It went on for an hour. Then, it became quiet in the room when the psychologist, who was looking down at the floor, not me, slowly uttered the dreaded sentence, "There is a condition called autistic spectrum disorder...." After that I don't know what he said. Except when I asked, through tear-filled eyes, if Liberty would eventually be okay, I heard him say, "We can always hope and pray." I felt like I had been socked in the gut. Then, someone shoved Social Security Disability papers in my face. I don't know how I even got home. I was completely devastated. My husband said, "Don't worry, these people don't know him, they don't know what they are talking about."

At home, I would look at Liberty and cry. My son disabled? I would never have used that word to describe my beautiful, happy, wonderful boy. I searched my memory for what it was I did wrong. I had an incredibly healthy pregnancy, only gained 25 lbs. In the hospital, all the doctors commented on what a healthy, beautiful baby I had. What went wrong? Was it polluted water around here? I started to convince myself of different things that might have caused the condition as my mind ran the list of possibilities. I pretty much drove my self crazy. It was years before I connected the dots to his one year vaccinations. I read about the connection, but because Liberty did not have those horrible immediate and sometimes violent reactions, I dismissed the idea. Until I realized by looking at his first year baby book that the pediatrician wrote in, that he had a double ear infection afterwards - the first one the pediatrician could not get to clear up so he gave my son a mega dose of antibiotic. Omnicef, I think it was.

Back then, it took me a long time to be able to make it through a day without crying. There were days I spent on the Internet scouring for information. We'd go to the park to play just so I could get some air and pretend all was normal. Then I began to look forward to the troupe of therapists that were sent to my house. Until Liberty was three years old, we received free therapy. Seeing the therapists was comforting to me. I could pick their brains about what they knew. They were compassionate and they gave me "homework" to do with Lib. I started to learn to become his therapist as well as his mother.

Here's the thing parents of newly diagnosed children are desperate to know - just like I was: What will this look like when my child is older? What does it mean for his future? And there is NO answer for that. This is the most frustrating thing in the world. No one can tell you what caused it, and no one can tell you if, when or how your child will progress.

I had a re-experiencing of the whole evaluation episode with my son this summer, when I met a mom in a waiting room where we were both taking our kids for occupational and speech therapy. She had overheard a conversation I was having with the intake coordinator from that evaluation long ago who I had happened to run into in the therapy office. This mom could have been me four years ago. She began to tell me what her son was doing or rather NOT doing. She said her husband is in denial but she knows there is something wrong. She said she thinks that her husband might be finally coming around but he just can't accept it. You could see the stress all over her face. I had seen her son earlier and knew he had a diagnosis of autism because my son did the same things at his age: Made the same noises, did the same hand flapping, was not looking, etc. In fact, it was striking to me because her son was the same age Lib was at his diagnosis. My son just turned 5 this summer. I could see how much progress Liberty has made since then.

My heart just broke for this woman. We discussed different things we had done for Liberty including therapeutic listening and diet changes. There was a lot more I wanted to say to her but she left before I could talk to her.

I wanted to say, "Listen, the evaluation will be hard when it's your precious child under the microscope. The evaluators are going to talk in clinical talk. It will feel very cold to you. Try to brace yourself for that and keep your chin up. You are going to go through the grieving process. You will be in denial. You will be angry at everyone including God. You will even bargain,and eventually get to some version of acceptance one day, but not anytime soon. Let yourself go through your emotions, but don't give up HOPE. Talk only to supportive people. Your circle of friends might change. It is important to keep your thoughts on the positive and not the negative. This will take work and you will need help! But your son's progress will be affected by what you think of him, your vision of his future, by what you think he is capable of. BE HIS ADVOCATE. If you don't think a teacher or therapist is really on your team, get another one! Be proactive and NEVER GIVE UP.

The most important thing I wanted to say to her was, "Don't LIVE under the diagnosis. USE it to help get your son the treatments that he needs, to get insurance coverage, but do not allow it to be a limiting factor in his life.

So many people wear a diagnosis like a wound. When you do that, you keep opening it over and over again and a wound will never heal like that. I think a diagnosis should be like a reference point, somewhere to start, but to constantly live in the shadow of it is to live your life under a curse instead of a blessing.

What does this mean, that I shouldn't call my son autistic? Of course, I will use that word in certain settings when necessary, like with school officials and insurance companies. But, the more I learn about autistic spectrum disorders, the more I see my son as chronically ill. I am not quick to dismiss every quirky thing he does as autistic anymore and I certainly don't go around apologizing for him in front of others saying, "He's autistic, you know, sorry...." I went through that phase for awhile, too. I choose my words carefully, and not just in regard to him. Your words eventually create how you experience your life. I think you really start to understand this when you live within a highly stressful situation.

Liberty is who he is and he is still in the process of becoming..as we all are. And I love my child fiercely. Love is probably the best guidance of all.

I have said this before: I am sticking with the folks who are learning what works and then spreading the word, and that is mainly the Generation Rescue people, the DAN! doctors. It is sickening to read that the CDC receives 8 billion dollars for research but they can't get a study together to research vaccine injury; meanwhile Generation Rescue spent $200,000 for a small preliminary study that overwhelmingly points to vaccinations as a culprit. (If you missed this article on Rescue Post, here is the link to the survey done by Generation Rescue http://www.generationrescue.org/survey.html).

I went to a DAN! doctor presentation this past Spring. She said that in 10 years, autism will be known primarily as a disease of inflammation. I hope within 10 years, the DAN! protocol will become mainstream. I can always dream.

For now, I just tell other parents to try everything they can and to always trust your gut. And, once you have gained some footing in this journey with your children, extend your hand and try and help the next parent of a newly diagnosed child to get a leg up, too.

The long and winding road of lab tests

Liberty got his very last blood test Friday. This one was for food allergies. I felt a great weight had been lifted from my already sore shoulders. He did very well, and let me say, thank you God for good phlebotomists. We found a lab with a wonderful guy who is very confident and just very, very good. I got his phone number so I can tell his supervisor to give him a raise! I have been calling before we go for tests to make sure that Eric is there. People can make such a difference.

I have two more stool samples to collect, and then the last lab kit will be sent off in the mail and then we are REALLY done, done done. Today, it is two months to the day that we saw the good doctor in NY.

Our first follow-up phone appointment with Dr. Bock is October 8. I am waiting with bated breath. Finally, we will have a snapshot of where this child stands as far as what's going on with his little body. I feel as though I have been stumbling around in the dark for so long, it will be a relief to get some answers.

And, this Wednesday, we have an appointment with a local homeopath. I only give Liberty homepathic medicines anymore when he is sick. So far, we have not needed antibiotics, which is a first, but there might be a point where he will. But, for cold symptoms and especially allergy symptoms, I have a few things I have gotten from the homeopath that really work well for Liberty. I'm hoping the homeopath will be able to tell me if Liberty's chapped lips are a withdrawal symptom, or a symptom of yeast or another food allergy. He's had them ever since we started on the gf/cf diet. Dr. Bock suspects yeast but wanted to test for it. Lib also still has some cradle cap and that, apparently, is an indicator for systemic yeast. I will ask Dr. Bock, as well, but I want to have the homepath at least examine Lib. Apparently, he treats a group of autistic children in the area. He is also an herablist and nutritionist. I am building a team for Liberty and a good DAN! doctor as well as a good homepath are part of it.

I must say that it seems Liberty gets better with each MB12 shot we give him. We are continuing the therapeutic listening, as well. He is pointing (which he never did), making choices between picture cards, and being very helpful, putting things back where they belong, and just generally more engaged and "present" than before.

So, we continue to progress...

Don't forget: Tomorrow is Jenny McCarthy's appearance on Oprah discussing her new book, Louder Than Words, about her journey with her autistic son. Should be interesting.

More Toxic Stuff to be Aware of...

Because I understand the principles of the Law of Attraction, I don't want to be a person who is constantly reminding parents how awful things are. In fact, I want to look for the good and make a conscious effort to do that every day. I am, however, going to bring things to your attention as I run across them, so that you can make better decisions for your children.

I have a personal belief that with all of the epidemics in the news (autism, asthma, adhd, allergies, bipolar, etc.) our children's problems are a reflection of the toxic state of our world, and are apparently going to be the catalysts to finally clean up our environment. They better be - if not our kids, what?

I try to stay with natural products, but sometimes I run out. I happened to have some Huggies Shea Butter liquid soap that I used to use long ago on Liberty when he had cradle cap. I was trying to find out if there was gluten in it (yes, you must check ALL of your products for gluten and casein) and instead I found it has a cancer-causing chemical in it.

Here is the blog I ran across and the information on 1,4 dioxane. I thought I would list it so you might want to check your labels.

http://mom4life.typepad.com/mom_4_life/2007/08/baby-shampoo-ba.html

and

http://www.safecosmetics.org/newsroom/press.cfm?pressReleaseID=21

It's just a reminder to me that I have to be vigilant about products I use and to do my part by cleaning up my personal environment at home.

9/11

Wonderful writing from Rob on such a sad day.

http://www.schuylersmonsterblog.com/

Radio Interview with Dr. Bock

Here is a link to a radio show interview on September 6 with Kenneth Bock. He discusses environmental factors and autism. It's very good. Thanks, Cristine!

http://wor710.com/topic/play_window.php?audioType=Episode&audioId=986993

Nice!

I was nominated for a blogger nice award!

This award is for those bloggers who are nice people; good blog friends and those who inspire good feelings and inspiration. Also for those who are a positive influence on our blogging world. Once you’ve been awarded please pass it on to 7 others who you feel are deserving of this award...

Thanks Drama Mama! I feel welcomed to the neighborhood. I am so amazed at how a whole community is created via the internet. Last Spring, I discovered other mom's blogs when I was looking for information. I got that, but I also became connected as well with a vast network of support. I am so grateful. I didn't think I could make a blog that would hold a candle to all you guys. I am SO impressed by the blogs I have read and visit frequently. I, too, check in and have coffee with all of you in the morning! I'm having fun and it feels good to get something on the page. Thanks for visiting my blog.

I am supposed to nominate seven more nice bloggers though some that I know have been nominated already, so here are 7 more of my favorites.

Schuyler's Monster http://www.schuylersmonsterblog.com/

Fully Caffeinated http://fully-caffeinated.blogspot.com/

life with three boys with asd (http://micheleiallonardi.blogspot.com/)

Roughly Speaking http://www.jennyrough.com/talk/index.html

Full-Soul-Ahead http://michelleoneilwrites.blogspot.com/

Write for Change http://writeforchange.blogspot.com/ - my wonderful and talented sister!

Maternal Instincts http://maternal-instincts.blogspot.com/

Our Horse Friends

I got this information from a yahoo group I belong to in our area. There is a horse farm here that provides hippotherapy that I am going to look into. I know that some ESE classrooms have taken field trips here and have some great success.

http://www.americanhippotherapyassociation.org/ and

http://www.vetmed.ucdavis.edu/CCAB/EATprograms.htm

On this site is information about Hippotherapy...you can also find a therapist in your state by clicking on Hippotherapy. The information below is an article copied from my yahoo group.

Why the Horse? The horse's walk provides sensory input through movement, which is variable, rhythmic, and repetitive. The resultant movement responses in the patient are similar to human movement patterns of the pelvis while walking. The variability of the horse's gait enables the therapist to grade the degree of sensory input to the patient, and then utilize this movement in combination with other treatment strategies to achieve desired results.

Patients respond enthusiastically to this enjoyable experience in a natural setting. Impairments that may be modified with hippotherapy are:

Abnormal tone

Impaired balance responses

Impaired coordination

Impaired communication

Impaired sensorimotor function

Postural asymmetry

Poor postural control

Decreased mobility

Limbic system function related to arousal, motivation, and attention

Functional limitations relating to the following general areas may be improved with hippotherapy:

Gross motor skills such as sitting, standing, walking

Speech and language abilities

Behavioral and cognitive abilities

Medical Conditions

The primary medical conditions, which may manifest some or all of the above problems and may be indications for hippotherapy, are listed below. However, hippotherapy is not for every patient. Specially trained health professionals must evaluate each potential patient on an individual basis.

Cerebral Palsy

Cerebral Vascular Accident (stroke)

Developmental Delay

Down Syndrome

Functional Spinal Curvature

Learning or language disabilities

Multiple Sclerosis

Sensory Integrative Dysfunction

Traumatic Brain Injury

Jenny McCarthy New Spokeswoman for TACA

Did any of you know that Jenny McCarthy had a son with autism and that she is the new spokeswoman for TACA (http://www.tacanow.org/index.htm)? Here is her blog below. Interesting to note that she believes her son to be a Crystal child. She was brave to state such. Call me nuts, I even explored the possibility. Why not? I keep my mind open. It really doesn't matter anyway. It doesn't change what I am doing to help him. It's another theory. I read Children of the Now myself. Hmmm.

Anyway, below is her blog. I look forward to seeing her on Oprah. I always thought we needed a follow-up show to the one Oprah did with Katy Wright and other parents. This should be interesting. Wonder if she will bring up the crystal/indigo thing? I just hope she will be a good representative.

http://www.celebrity-babies.com/2007/04/jenny_mccarthy.html

A great site, a great family...

For those of you who are interested in memoir and are not familiar with this family's journey with a gorgeous daughter with a serious disease, you might want to check out Schuyler's Monster. I've been following them for awhile now. The book comes out in February. Rob is a wonderful writer.

http://www.schuylersmonsterblog.com/

Slow but Steady Progress

Well, we finally got all of Liberty's blood tests completed (oh - except for ONE which is not considered a priority and requires a LOT of blood). There were four tests that were considered of extreme importance and could not be done all at once lest we drain the child of all of his blood. No one likes to put their child through the trauma of being held down to have blood taken. Our child who used to do so well at the doctor's office has been traumatized so much in the last month that he is afraid to even stand on a doctor's scale, looking behind him to see if someone is going to wrestle him down. I suppose in time, he will get over it. And, they had to be done if we are going to finally get a clear picture of where this child stands metabollically and tailor biomedical treatments to his needs.

So, it was awfully stressful, but it's finally done and over with. I thank my father again for providing the money needed up front to get some of these tests because, as I have stated before, some of the kits require a check and have to be FedEx-ed. I really hated having to handle all of the blood and urine myself, but we did. And, any receipts we get back of course will be filed with insurance immediately. Our insurance is paying for the MB12 shots at 80/20. They, however, did not pay much for Dr. Bock's fees, which I figured they would not. He was not a doctor on the list.

In the meantime, we are seeing some great results so far with the MB12 shots and I have just started the supplements the doctor gave us, beginning with zinc liquid at night and cod liver oil. The teachers report to me what he does each day in kindergarten and the reports are basically glowing! We had Lib on other supplements from another doctor last year, but we are kind of starting afresh with this doctor and doing things his way. Last year, we were given a list of supplements to try and we began them all at once. Dr. Bock's office said that this is not the way it is done, that we need to give one for at least three days, note any side-effects, then proceed to give the next. Wish I had had this information last year, huh? What I am most eager to find out is his levels of METALS.

So, now I have to prepare what I call Liberty's Daily Record for all of the supplements so I can list out any positive or negative reactions. This is a lot of work to keep up with, but it is so important that I do. I feel like Super Sleuth, trying to get to the bottom of this puzzling mystery. The doctor can do his part by looking at his labs and advising me of what action to take based on his experience. But, it is also crucial that I keep good records and observe Lib closely so I can give accurate reports to the doctor. Even little things I think are insignificant could offer a clue to what's going on with the child.

Last night, he was up laughing at 1:00 AM. He could not get back to sleep until around 4:00. I did give him some Zen (if you are not familiar with this, this is GOLD) and he went back to sleep. He bounded out of bed at 8:00 raring to go to school, while I drug myself to the car with my coffee. And everyone asks what that episode was all about? And, as usual, I say, "I have no earthly idea." When you are watched under a microscope, everything seems to require an answer. Now, I KNOW that there are neurotypical children who sometimes wake up at night, or who do odd things which their parents don't understand.

Ah well, just another day in the life. But, hey, we ARE making progress and that's all that matters.

A New Leaf

I came down with a 24-hour stomach flu. It lasted exactly 24 hours from 6 AM Wednesday morning until 6 AM this morning. Whenever this happens, I am reminded of how much falls apart when I am not up to par. My husband works hard, but he is out there slogging in the fields in two jobs (we're both self-employed). He works about 30 minutes or so away, not bad, and he would come home if I really needed him too. Still. I have taken care of the child for 24/7 now and I know the ins and outs of the day. I also know where everything is and how to work the various remote controls. Trust me, this is sacred knowledge in our house. I know how all of the machinery around the house works and am apparently responsible for their upkeep. My husband is a very smart man; he, is, however, electronically challenged. I also have acquired a new responsibility of "catching" the washing machine when it gets off balance which is each and every day without fail because it is needs to be repaired and has been since, say, last Fall.

Like so many other moms, I keep the homefires burning and the ship running smoothly. Usually. Luckily, I got over my sickness within a day. I feel so helpless though when there is so much to be done and all I want to do is sleep.

Anyway, thank God for stamina and good genes. I got right back into my routine today, even though the whole time I was sick I was vowing to change my life: eat better, slow down, nap more, put myself on a schedule, stop eating cookie dough ice cream, etc. I need to turn over a new leaf. I was in mid-trot today through the house (much like Edith Bunker's) when I realized that I am not seeing this as an opportunity to change. I don't want the same routine, because the same routine almost killed me this summer.

So, I vow to find a new yoga teacher (mine left town for greener pastures), get my back straightened out again with chiropractic care and massages, and make a schedule for myself where I actually get 10 minutes to do FUN things like play my guitar, write in a journal, read a chapter out of a book, etc. I have decided to buy a new pair of tap shoes and go to an adult tap class no matter how much I fear falling off my shoes. I need to get back into the game of life. My Life. My life has been mixed with Liberty's for so long, I didn't notice it disappearing.

I know with some creativity on my part, I can come up with some kind of structure where I can fit in some personal time. I've been too tired to think about it, though, lately. School has started and here I have from 7:30 AM until 2:15 PM without the child. I should be doing all kinds of things, but instead I feel like I'm moving through quicksand and I lose my memory a lot and tend to stare for long periods of time out the window.

Honestly, though, if I tune into my Higher Self, I know things will fall into place eventually. I know it takes time to get into a new routine and I am probably just exhausted from the aftermath of the summer and need time to recover. I think its kind of like a potter's wheel. The wheel spins round and round even when the potter's foot is off the pedal and it has to wind down until it eventually stops. This thought makes me happy. Perhaps it's not old age or menopausal symptoms after all! (Okay, maybe I'm going a bit too far). Perhaps its not the aging process seeming to be rapidly accelerating or the be-donk-a-donk butt that is manifesting. No: It's just sheer mental and physical exhaustion. I'm just plain ol' tired and need to allow myself to just BE for awhile. For once, I'm going to allow myself to just BE for as long as I need to without guilt and without the need to plan anything. Ahhh, it feels so good already.

Time Out O' Mind

Years ago, somewhere around the early 1990s, I lived on a 500 acre farm in rural Virginia in a very old farmhouse with no running water and an outhouse. Though I was there for a short two months, it was one of those experiences that I treasure. A friend of mine's family owned these 500 acres and the farmhouse was the old family home. It was set back about 2 miles from the main road. There were wild turkey that roamed the woods and we had quite a collection of feathers as they left their gorgeous calling cards on branches. There was an old corn crib and quail in the fields. I was in between jobs and at a crossroads in my life; and I had some interesting friends who were also kind of in between varying stage of their lives. So, our mutual friend offered the house as a kind of time out - no rent, catch your breath, dream, figure out what to do next -kind of time. It is one of my most treasured memories.

Remember Walden Pond when Thoreau described sitting in a doorway all day and listening to the sounds of nature? The only distraction was the sound of a passing wagon. Virginia and that 500 acre farm in Arc was that kind of time out o' mind for me.

There were three of us who lived out at the house and friends would come to help paint, bring water, or just visit on the weekends. We dug a fire pit and we would have a bonfire each night. We sat on tree trunks that had been arranged around the pit in a circle. One of my friends was a fabulous cook and she managed to make us great meals in the old kitchen. Another one was a professional clown (among other talents) and even one of his friends was Patch Adams!

What I remember the most about that time is the incredible inky blackness of the night, the milky way that seemed to go on forever, and the starlight that was so bright you barely needed a flashlight. One night I became disoriented because the ground was also bejeweled and blinking on and off, just like the sky. We discovered it was due to glow worms which are the larvae of fireflies!

The campfire became a way of life at night. A way to drain all of the cares of of the day and share our experiences. The fire was transforming. We began to tell stories. Then, quiet would eventually ensue as we were tapped out and took our sleepy selves off to our beds.

I return to these memories often. In this fast moving technoworld, I long for the nightly campfire and friendly campfire talk. It seems so natural to gather at the end of the day, and it seems also natural to want to stare into a fire. And, with the stress of my child's diagnosis and the added responsibilities, I think, wouldn't it be nice to have this kind of ritual to look forward to instead of just collapsing in a heap after he is finally put to bed? Even Liberty is calmed by the nighttime air and staring into a fire. I think it is something that is just in our blood, going way back to our ancestors. Perhaps this is why fire bowls are so popular now.

Hey...hmmm....maybe I'll get a fire bowl for the backyard this autum. Won't be quite the same as being way out in the woods, but it's a start. Creating even tiny islands of peace each day makes a big difference.

Comic Relief

Whenever I need a really good belly laugh, I can always count on Lucy. Cheap stress reliever. Seen every episode; doesn't matter. I still laugh out loud with her.

Is There A Physicist in the House?

I was thinking about the sensory issues that go with autism. I remember how hard it was for me to get my mind around the concept. When Liberty went for his therapeutic listening evaluation, the occupational therapist told me that Liberty does not know where his body is in space. (The reason why he cannot point to body parts). She asked me if he drags his hands along walls when we walks. I never really noticed, but after that evaluation, I realized he did. And that he was always touching people and things such as grocery carts, running his hand along the shelves of videos at the video store, getting a feel for the boundaries in a room. And, also, he used to just throw his sippy cup down anywhere and take off. The therapist said that when he put the cup down, to him it just disappeared.

Since getting occupational therapy and just his normal growth I suppose, a lot of spatial issues are getting better. But it got me wondering what Liberty's experience of Being really is. And that reminded me of an old Twilight Zone episode called, "Little Girl Lost." The story goes that a child was in her bed and then disappaered, but the family could hear her calling them. Then, the child's dog lept through a "portal" in the wall that was not apparent to the naked eye. They could hear the far off barking.

The episode is amusing because they immediately called a physicist! I suppose, in my foggy memory of the show, he happened to be a family friend. It turns out that the little girl had fallen into the fourth dimension. Eventually, they got her and the dog out. At one point, the physicist puts his hand through the opening in the wall and there is a scene where all you see is his hand poking through the other dimension.

Anyway, sometimes I think Lib's world is like that and every now and then he is really here, he sees my hand and I can lift him through; other times, he retreats.

I do have to say that after my last post in which I was focusing on the difficulties of our daily lives (intensified by the start of school and magnified by the lunar eclipse!), I met with Liberty's kindergarten teachers and got glowing reports about his progress. They said he was the most engaged ever after the last MB12 shot, doing age-appropriate things, following commands and starting to answer to his name. I was really elated by this news. I cannot say for certain that it is just the shots that are helping him. We are still doing some therapeutic listening, too. Then there is his normal growth, then maybe some natural chelation through his epsom salt baths. I don't know - its hard to pinpoint and that is so frustrating.

In the end, its all a Great Mystery. Maybe I should call a physicist.

Tennessee organization for free DAN! and other services

Here is the site for the free services. I cannot get in touch with anyone there. I have been speaking to the head of the East Tennesee Autism Association and she said she has been trying to reach them, as well. If anyone finds anything more about this place, let me know.
http://org.autismsolutioncenter.com/about/about.htm

The Way Things Are

One of the best things for me about blogging is meeting other parents of kids with autism. Reading their experiences helps me to remember that there are other families going through the same kinds of highs and lows as I am. Within the blog community, I don't feel like such an outsider as I do with the rest of the world. I also need honesty, not to be placated with metaphors of Holland (http://www.creativeparents.com/Holland.html). Somehow, this has never comforted me.

Unless you are raising an autistic child or any special needs child, you understand that there are so few people who really get "the way things are" in your life. Reference Michele Illionardi's blog about daily life with her three boys with ASD, ( http://micheleiallonardi.blogspot.com/ ) . In one of her entries, she talks about how people ask her if her son will ever talk and that she has never known what to say. I get that a lot, too. Although, since we started the MB12 shots, Liberty is jabbering in such a way that it sounds like sentences, still, he is not using words. (He said a few words in speech therapy weeks ago, never to be heard again). He is really trying and occasionally he is able to say a word. But, its still very hard to communicate with him. He still relies on gesture and a few pictures. It's hard. I ask him questions, especially, "What's wrong?" Never an answer. I don't ever really know what is wrong - its all conjecture on my part. Maybe some intuition mixed with anxiety. Everyone wants me to tell them what's wrong with him when he cries and I usually don't have a clue. It could be one thing or lots of things. I don't know. Liberty's silence is deafening.

There are many people who pity him and me. "Oh, he's so beautiful, too. That must make it doubly hard." This is what a pediatrician here said to me. Most of the time I am so stunned by comments, I don't know what to say - have no snappy comebacks ready. Or, how about the barage of questions at the IEP meetings, especially this one, "What do you want to see Liberty doing by age 18?" When I questioned what they meant, they said they wanted to know if I was thinking of a group home or him living with me. I said, "He's only five years old." They then look at me like I am in denial. However, I have learned the magic words to say: "Functioning as independently as possible." They love that and then we can move on without much discussion. I don't want to run down the public school system - its just that for the most part, most of them have written off my son and other kids with ASD as disabled for life. There are a few people in the school, and perhaps sprinkled about our county, who have a major clue about autism, but most I run into do not. These are the people with whom I really don't want to waste my breath. I stay within my created community where it is safe. I could get beat up pretty badly by ignorant people "out there" and have.

See, for me, the jury is still out on my boy. All I know is he was developing normally, then one day he was not. And, its been this long, long trek (4 years) to get the wicked witch's broomstick to take to Oz and get him back. And, along the way, we've been through pediatricians, some well-meaning, some not. We had a neurologist who was completely abusive to me and at one point stated that "supplements are a bunch of crap" and John Kennedy's reports "read like a trashy novel." He actually "joked"that maybe my mercury amalgams had something to do with it, ha, ha. I should have reported him, instead I went home and licked my wounds.

Getting to a DAN doctor was like knocking on the door of Emerald City. The only thing that has been standing in our way from getting to enter, is affording the expensive lab tests that must be paid for up front ($1,000). So, yesterday, I borrowed the money finally from my wonderful father so we can GET ON WITH IT and try and get somewhere. After the blood tests, I can start on the $350 worth of supplements Dr. Bock recommended which are sitting on my counter mocking me. Hopefully, soon after we get a picture of where he is metabolically, we can start chelation of metals. I don't know what the outcome will be, but I need to be able to say to myself, Liberty, and God that I did everything in my power to help this child. I almost got him to a DAN! doctor in 2004, but Hurricane Ivan came and ransacked the town and life stopped here for awhile. I did take him to an integrative medical doctor in Arizona last summer. We started some supplements and did genetic testing, but not much was done in the way of labs. I decided I'm sticking to the DAN! protocol and speaking with all parents whose kids are in the process of recoverty. At least there is HOPE there.

The well-being of my child is what drives me every day. I wish I could explain that to people when they look at me and tell me how my life exhausts them. People say they worry about me, that I might collapse from all I do. It's just become so normal to make the special foods, monitor what goes in and what comes out, structure the day, anticipate tantrums, etc. and manage to have a job to boot. And, I do joke a lot about not having time but honesly time has become like the Salvador Dali dripping clock - time is just different now and so am I.

Back to School at Long Last

I’m hearing lots of “hallelujahs” and collective sighs from moms recently as school has finally started again (and God knows, I am one of them). For parents of special needs kids, the summer is a tough one to get through, unless you have camps or programs lined up and, even then, they don’t last the whole summer. Liberty attended ESY this year, but since school was out on May 22, he was done with the summer school session on June 26, leaving me with two whole months to fill since the school year started later this year on August 20. We missed the newly launched autism camp in town because at Liberty’s transition-to-kindergarten IEP meeting in May, the comments were made that, since it was a first time thing, all the bugs probably weren’t worked out yet and I got the impression it would not be that advantageous to attend. It was really downplayed to me at the meeting. What?! Are you kidding? It was plastered all over the newspapers this summer– the wonders of it, how there were ABA therapists there, first one of its kind, etc. Even teachers I happened to know were there. It was nauseating. I later found out that all of the kids were also potty-trained at the camp. Sheesh! Oh well, we went to Rhinebeck and got established with a top DAN! doctor so the summer was really quite remarkable and not a total loss in that light and I have to keep that in front of me. But, I still get my ire up when during the crapisodes we had this summer (thank you Kim Stagliano for this phrase), I tried to hire an ABA therapist to help me potty train. It didn’t work out. She didn’t show up after I wasted the entire day, and later when I finally got a hold of her said, “Oh, don’t you text message?” Apparently, she had text-messaged me she was not feeling well and couldn’t come. I was speechless. I STILL use the telephone, imagine that! Put me in the Ned Lud Society (basically people against technology)!

Liberty is working on his second week of ESE kindergarten and I must say it is going well. He is using his pictures to request food and loves school as far as I can tell. Last week I was in a kind of daze as my freedom had not really sunk in yet. I mainly reorganized the house and put things back where they belong which was no small thing. It always looks like a team of wild monkeys have ransacked the place. This week, however, I am starting to feel the glorious feeling of having TIME TO MYSELF. I actually went to the library yesterday alone and pawed over the books, lingered even. In a few minutes, I am going to go sit in quiet meditation and just BE for a little while before the golden bus pulls up at 2:30 and the spell is broken. I do work for a living, but I am blessed with a flexible job where I can work any time of the day at my computer, so some days I choose the morning to work, sometimes the evening.

Don’t get me wrong - I love my son beyond words – but everyone has to have some time to themselves and I am way past long overdue. I have been teetering on the edge of insanity for approximately two months now. Just being able to file my fingernails in peace is novel, or to read a few chapters from a book, go shopping by myself, do yoga in my living room, take a walk, breathe. All Heaven.

My hats are off to all of the parents with more than one child, and especially more than one with special needs. I only have this one little boy with ASD. He is the absolute love and joy of my life but he is nonverbal and does not sign and does not use a variety of cards (PECS). When he has a breakdown or tantrum, half the time I don’t know what is wrong. Its very draining. It seems I am always managing anxiety about his future in the background. I’m constantly trying to find new ways to view his autism, new ways to deal with it emotionally. I guess its like this: Some days are better than others. And, I can always count on the wonderful blogs I have found of other moms and dad who can relate to what I’m going through and can offer just the right thing to help lift me up when I’m about to spiral down. Thanks to all of you. As a friend of mine likes to say to me, “Together, we can make it!”

The Miracle of Methyl B-12?

Liberty said four words in speech therapy Tuesday! His therapist and I were stunned. He is going around the house saying a string of sounds, sometimes almost "sentences. " The only thing different we have done lately are the methyl B-12 shots. I spoke with a nurse at Dr. Bock's office and she told me she thought that this would happen. In the meantime, people who Liberty comes in contact with on a regular basis such as his therapists and teachers are all watching closely. Information about the biomedical treatment of autism is just beginning to spread to the mainstream, and our autism society here now has a biomedical division.

Recently, I spoke with the autism consultant for our county who oversees all of the autistic classes in the ESE programs around here. She told me that she had just gotten back from a CARD conference in which Dr. Bock presented on biomedical treatment! This is pretty cool considering we live in a small town in an area which, we thought, was not as progressive as the rest of the country.

I was marveling at the synchronous events taking place for us, then I remembered the dream board on which I placed some images and the sentence, "Liberty's A-Team of Support." I can see, looking back over the past six months, how the right teachers, therapists and doctors have entered our lives, demonstrating the Power of Intention. It's great!

More later...

Not for the Squeamish

I'm having a rough day today.My son is not potty trained and God, what an understatement that seems like today. Today I just happened to wake up and decide that I need an ABA therapist in here pronto to help me potty train Liberty before kindergarten (which starts in two weeks). We have spent the summer treking from therapist to therapist and, frankly, I think should have gone for the potty training first. Actually, I tried to hire a woman who did not have her ABA license yet but was supposed to be working on it and she was also slated to be Liberty's kindergarten teacher next year, at the start of the summer. I thought she would be just what we need, but she unfortunately turned out to be someone I would not want my child near. So, I just scrapped the idea and started to gear up for our trip to see Dr. Bock in NY.

All day, Liberty has taken off his diaper or his underwear. He has peed a couple of times. And, for the second time today, I just cleaned up smeared poopy hand prints from the living room couch, walls, bedspread and my hair and clothing. I am about to go insane. It's hard to give Lib consequences or rewards when he does not have anything that he is passionate about, except perhaps hanging out in my office and spinning in the chair. Finally, I put him in his room. He tried to escape a few times, but I think he has finally laid down for a nap.

You might be saying, where were YOU when he was doing all of this? Oh things like trying to take a shower, cook, answer a phone call, put on my clothes, etc. Normal things. I cannot be with him every second, and I check on him constantly, but no person who is by themselves can be there every single second unless you are sitting around doing nothing else.

Apparently, methy B-12 helps move your bowels! Thanks for that warning.

After all of the cleaning, scrubbing, scolding and just plain bitching and whining to myself and my poor husband (who I called repeatedly to share), I just feel old and tired. Then the old, "I didn't sign up for this, I know it didn't" thought. I need help and no one has returned my calls today. I know I need to regroup and reach for some higher thoughts before my mood goes straight down the toilet. I have cleaned up so much poop today and for the last 5 years of my life, I could be a poopologist. This actually made me laugh, at least.

To show just how far Abby Normal I have gone, I actually saved some of it for the damn stool sample I have to get. I have to obtain 5 test tubes of them to send off to the lab, complete with a mini shovel to stuff it all into the tube, and my thought was, "Gee, no time like the present..."

Off to salvage what is left of my day and change my poopy disposition.

A DAN! Doctor At Last

It has been two weeks since returning from Rhinebeck, New York to finally see a DAN! doctor. My sister gave us a book written By Dr. Kenneth Bock http://www.4ahealing.com/booklanding.html. We basically had to beg, borrow and steal to get there, but get there we did. I cannot say that we are none the worse for wear, however. We are still recovering.

Lib was diagnosed with autistic spectrum disorder at 20 months of age. Our story is a familiar one by now: Normal developmental milestones, healthy pregnancy, delivery, then......the MMR at 13 months, then the ear infections and antibiotics and at 17 months...eating down to nothing but graham crackers, no eye contact, no speech, etc. We have spent the last four years with therapists in and out of the house, then into the ESE school system, and now, finally getting to biomedical treatments for him. Lib has never developed speech, only a few words that seem to come and go. He just turned five years old in July and I panicked. Would he have gotten better if I had just gotten him to a DAN! doctor sooner? I'll never know.

The trip to NY on the airlines was okay. Liberty wore his headphones and he was fine. (He is doing therapeutic listening http://www.vitallinks.net/). It was the 5-day stay in the motel, however, that took a few years off our lives. The first night Lib was so wound up he bounced around the motel room until 5 AM. One night shortly before we left, my husband and I wound up driving him around the parking lot of Wal-mart at 1:30 AM to get him to calm down and go to sleep (and to prevent the Marriott from throwing us out). Usually extremely good-natured and easy going, this trip was asking way too much of Liberty.

Our first appointment with Dr. Bock lasted three hours and the doc actually read every word I wrote on the 15 page intake form! This has never happened before in all of my dealings with doctors. The next day, we learned how to give Lib his first methyl B-12 shot. We also went in for labs which was hell-on-this-earth and they were unable to get hardly any blood. The lab tech said that he was dehydrated (he had to be on a 12-hour fast); at one point she commented that she "blew a vein." The child was screaming while my husband held him down. We were sent home with prescriptions for blood tests and Lib's arm was black and blue. (I later learned that we have about 16 tubes of blood yet to siphon from the child). We have about 900 bucks worth of tests left to complete. The trip was not cheap but I have filed everything I can with our insurance, hoping we might get something back. Dr. Bock was wonderful, so I do feel satisified that we were able to get Liberty under his care.

To top the whole experience off, the trip home was a nightmare. Lib screamed on the way back to Atlanta, something new for him. He got up in my face and opened his mouth so wide to scream that I could see his tonsils. People on the plane turned and glared. My husband was able to calm him down as I was so worn out, I just broke down in tears, too. There was an older man sitting behind me who touched my shoulder and told me everything would be alright. Thank God for the kindness of strangers.

We made it throught that leg of the trip but when we got to Atlanta, the departure gates were entered wrong on the flight boards, so we trecked into the bowels of the airport and back twice. Next, they cancelled our flight altogether. We then stood in line for two hours praying we could find a flight as we ran out of diapers and food. Lib has been on a gluten free/casein free diet for almost three months, and I knew there would be no food we could just grab anywhere. It was like being in the Twilight Zone on a trip that would never end. Eventually, by the Grace of God we got home around 3 AM. Lib ran around the front yard in the rain yelling, "Yay, yay!"- about the only thing the little guy can say.

In the past few months of clicking around on the internet, I have learned so much from other mom's and their blogs...not only about treatments that have worked for them, or what's going on in the autism community, but especially in the realization that I am not alone in my feelings. That there are others who have experienced the same kinds of frustrations, sadness, insight, joy, rage, etc. Once, after I thanked one Mom for her help, she said sharing our common experience of raising special needs kids makes us kind of related. That feels right to me.

So, in sharing my personal journey with our son, my hope is that we can all be of help to each other in some way.

Namaste.