Send me some LOVE

What a hard day. We tried to get an EEG for Lib but there was just a horrible snafu at the neurologist's office. I've never liked that office, but if you recall, there is a new neurologist who is really cool and I like him very much, mainly because he is not at all like "the others."

My husband went back in the EEG room with Lib this time. A woman poked her head out of the doorway and asked if Lib was allergic to anything. I said no. However, about a week ago when I was on the phone with a nurse, she mentioned that the EEG therapist will give Lib Benadryl. I said, "Whoaa... Benadryl has a paradoxical effect in Liberty. That won't make him sleepy." The nurse failed to write it down on the chart, and I forgot to say anything to the EEG therapist. You think she would have said something to me. So, according to my husband, she gave Lib a dose of chloral hydrate and then a great big dose of Benadryl. He began screaming and...well, you can imagine the scene from there. They kept waiting for him to go down. One hour of waiting...no one came out to get me and tell me that my son was screaming and would not go to sleep. My husband was irate, trying to get someone to come into the room because they had put a CD on in the room and it was skipping. He said no one was there to assist him.

What if Lib was having a bad reaction like an irregular heartbeat, or rapid heartbeat? Where is the doctor with the stethoscope helping us, making sure he's okay? Where the hell was everyone? I hate that my son had to suffer like that. It's the most helpless feeling in the world.

Why does this office assume that Benadryl is okay for everyone? I guess they thought they had it covered by asking me if he is allergic to anything. He was never actually allergic, but he always got hyper when he went on it and no doctor ever said, he's allergic to it. I guess, once again, it's my fault, but hey, it doesn't really seem like it's my fault!

Okay, so my husband was FURIOUS. I demanded to see the doctor right then.

Long story short, mad husband and screaming child go out to the parking lot so I can talk to the doctor. This doctor, though now part of the practice, has nothing to do with the method of the EEG. I'm sure he didn't know how they do it, only that they just do it and bring him the printout. He did apologize to me profusely, but it really wasn't his fault. Everyone was running around saying that they had noted it in the chart and I felt like saying that there won't be a next time because I'm not putting him through this again. It's so eternally frustrating.

On a lighter note, I still really like the neurologist. He asked me to describe what I was seeing in Lib and we think it is complex partial seizures. He gave me a prescription for a small dose of medication to see if it helps at all. He said for us to talk by phone more again about Lib. Clearly, everyone in that office was upset by what happened. They should be! I am waiting to talk to Dr. Bock on Friday before I do anything.

Poor little Lib. He was so miserable. I think he may have been hallucinating. He went in at 9:30 AM for his appointment. He finally went to sleep at home, utterly exhausted, at 4:00 PM. And, after all that, we still don't have an EEG. I'll be damned if we do this again any time soon. And, not one person has ever suggested an MRI.

Poor parents - we had to sleep deprive Lib by putting him to bed two hours earlier than normal and waking him up two hours earlier than normal (so he'd go down easy for the EEG) so we were pretty beat to begin with. And, Lib could have no water or food before the procedure. So, we were not exactly a pleasant group to begin with this morning.

Oh---and of course, that constipation I told you about? Well...let's just say I was scraping the walls down around 3:00 after hosing Lib down in the tub. But, I wasn't upset. I was celebrating the moving of the bowels.

It's funny how much I really appreciate just the basic things.

Helping Healing Hands

I learned how to do this over the weekend. A neophyte, but I saw it work and am already incorporating it into my life. A fascinating little video that explains it in a nutshell.

Dads and Drums

Summer camp is almost over. Yesterday, my husband took his band to the school for the second time to play a few songs for the children, and then let the kids line up and get a shot at playing his drums and the other band member's bass guitar and electric guitar. These kids eat this up. They also love the microphone and many stood and sang into it. These are children with autism, mind you. They THRIVE around music and instruments. My husband just intuitively knew that bringing his band and especially letting the kids play the big professional drum set would be good for them. He is great with the kids.

Then we found this site that is called Drums and Disabilities. Here are the links if you are interested in checking out how drumming can be part of a therapeutic program. We are just learning about it ourselves.

D.A.D. Drums and Disabilities and more about it also here .

New Skills

Lib is riding a bicycle on his own, steering, pedaling, etc. It's like he grew up overnight. He would not do this last year even when we bought him a bike with training wheels. He would sit on it and try to pedal a little but could not steer, lose interest, and hop off.

He has picked up more signs and since we don't have a sign for a DVD he likes, he found a picture of it and brought it to me while I was in the kitchen today. That is something I tried forever to get him to do last year when we were frustrated, trying to get him to communicate with pictures.

My boy is taking off with flying colors. This concentrated six weeks of camp with intense applied verbal behavior in increments of 15 minutes with one-on-one teaching has made the difference. I know that their method is working with my son when the things that he learns at school can transfer to home and other places. He signs to everyone now. He doesn't have a lot of signs, but what he does have he uses and he is communicating, that is the bottom line. Boy, I really see now what kind of accomplishments can be gained in such a short time. Wow.

Compared to where he was last year, he is now light years ahead. He understands faces and body parts and his focus is increasing and there is a feeling more of his being present with us. I hear about some parents talking about their children "re-joining" the family. This is how it feels. Last year, he was not connecting with us like he is now.

I describe in detail about Lib since just because our children might have the same label as autism, they are all different. Some children talk and communicate fine but have deficits in other areas. Some children know where they are in space, don't have the many sensory issues that we have had to deal with. Someone at the camp who is around Liberty made the comment that he has really "come out of his shell." Always so loving and affectionate, my little one just could not communicate with words or signs, only gesture, and lots of frustration.

So, to see him riding a bike down the hallway of school, and waving bye-bye and putting Mr. Potato Head together, and touching his nose when you ask him where it is, and saying what do you want, and watching him sign "pretzel," well, it's amazing and actually a relief.

We are understanding each other!

Now, the trick is going to be keeping up with the Carbonne method in our home routinely. I'd hate for him to lose any of these skills as so commonly happens when kids are off for the summer. That's where some help getting a home program will come in handy. Liberty's former speech therapist told me that the children who have a program at home, (and by that I mean parents reinforcing what is learned in school and therapy), are the ones who do better.

I'm so proud of Liberty and how hard he works and how little he fusses. He truly is my trooper. And, he's happy. The teacher told me that she sees his confidence increasing. I have never had anyone say that to me about Lib.

On another note, my husband is doing another music workshop for the kids next week. He takes his band out there and they play songs and then he lets the kids get in line to play on his drums, and the other members, one guitarist and one bassist, they also let the kids play on their instruments. The kids loved it last time and, in fact, there were apparently some breakthroughs with children in terms of communication and getting truly excited about something. That's the magic of music, I suppose.

Yep, it's been a great summer so far.

Be Aware of Deadly Drains in Pools

If you didn't catch Good Morning America, please watch this video. Children have died terrible deaths by getting caught in the drains of pools and hot tubs. Why did it take five years to get curved drain covers which don't have the powerful suction that regular drain covers have installed in public pools? Many businesses have not complied. It's frightening. The drain covers are only $40. Pass it on to others with pools.

Too Funny Not to Share...

From Kim Stagliano's blog today...the horror of trying on swim suits.

In the 'Hood

Liberty is doing great in camp. His teacher is ecstatic about his progress. I don't understand everything they do, but they are following instructions and methods from the Carbonne Clinic. They take a lot of data each day which I am hoping I can take to Liberty's school this year.

Yesterday, I was told that Liberty retained everything he had learned the previous week which was about 15 things that include matching skills and imitation. Also, when I went to pick him up from camp, there he was riding the big trike down the hall to me, steering. He's been on his bike before and pedaled a little, but would never steer. This teacher said he circled the halls yesterday three times by himself with no help.

I noticed that when we are in the pool his coordination is getting better, too. He has more of a sense of where he is in space and I think he will actually be able to swim one day. I found a swim instructor for children with special needs so I am hoping to line some lessons up when camp is out. They seem very cool and have a swim team for special needs kids called Sea Stars.

What I have found this summer is that Liberty is capable of much more than I ever dreamed possible. Sometimes it makes me feel inadequate at home, but let's face it, I cannot give one-on-one at home for eight hours straight unless I dropped the rest of the responsibilities from my life. It has crossed our minds before, trust me, that perhaps I would be the best teacher for Liberty. But, I think I might have found someone who actually lives in my little town who can help me create a good home program for Liberty. Finally. Ironically, it took a blogger friend who lives in NY to hook me up with a woman in this teeny town in FL where we live! Turns out she was in my son's class the first week of camp but had to drop out because of some pregnancy complications. How small is this world, I ask you?

I have been too critical now, I feel, of our school system. I see Liberty's particular school in a new light, realizing that most children don't get the one-on-one instruction that he received last year, that verbal behavior really is probably the best route for him right now and not just using PECS. Camp has made me appreciate the school I was getting disgusted with, imagine that! I have learned not to judge so quickly or harshly just because I am frustrated. It takes time for the teachers to get to know the kids, too.

So, I have surrendered to the Universe and am allowing the right people, places, and situations to que up for us now. Truly, anxiety blocks these things and colors my perception. I've just been so darn scared that somehow I've done all of the wrong things, or it's too late, or a million other fears that rise up from the Pandora's Box otherwise known as "What's Going on with Liberty?"

This morning I awoke thinking that I want a whole new day. I want a whole new way of thinking. What if I were to drop the anxiety and the painful story just for today? What if I just focus on all of the things going right for today? There are so many.

I just recently found out that a doctor in my neighborhood who is a developmental pediatrician just got DAN certified. Okay, I'm whispering so there won't be a mob at her door. She happens to partner with another doctor I would want to be MY doctor who runs a really cool alternative health clinic and day spa. In this little town, in my own backyard.

Next week, we are going to take Liberty in for a repeat EEG because we are seeing more and more episodes that look like absence seizures. I hate putting him and us through this, but it is necessary and we will get to see the new neurologist who is so cool. I read his book, by the way. He worked with Mother Theresa and traveled through the Amazon rain forest by himself. What a story. He's in my neighborhood.

And, I've still got the big guy, Dr. Bock, in NY who is not taking any more patients for a long time in our support group.

Perhaps I really am drawing all of this to me, as my sister says I am, through my Love for Liberty and the unwavering search for the best help. Now, if I can just do it gracefully, sans anxiety.

Don't they call that Trust?

Hell On Earth

I can barely open my email anymore, or visit a blog, without bursting into tears these days.

How many? How many more children will be lost to autism? How many will actually die from vaccines? When in hell is anything going to be done? Then there are the ignorant idiots who happen to have their own (3rd popular in the US) radio show who feel free to say things like autism does not exist and that these kids are just brats whose parents don't discipline them.

THAT gets in the news.


I weep often. I weep for my own child into whom I pour all of my precious energy to recover. I want to DO something about it all, but I can't. All I can do is talk to people who cross my path, write to representatives, pray, read blogs, pray some more. I could not afford to attend the march on Washington with Jenny and Jim. Lots of conferences I'd like to go to, financially, we just cannot afford to do it.

To be honest, to read about all of the parents experiencing HELL on earth right now because their children have disappeared before their eyes, who cannot work anymore because they have become their children's caretakers instead of parents, who are crying and angry and want someone to pay for taking their beautiful, healthy children away...well, I can't take it anymore. I cannot read about it. I lose my footing, I break down into a sobbing mess and I cannot function the way my family needs me to. It rips my heart out. I could fall into a big hole of blackness if I really did not watch out - if I was not vigilant every day to look for something good. I just could not get out of bed in the morning.

I fall into despair each time I read more of the horrors that are being done to our CHILDREN and the fact that our government IS LETTING THIS HAPPEN. The fact that TOMATOES are in the news and NOT OUR SICK CHILDREN. The fact that the DRUG MANUFACTURERS have such power. They are killing our children.

How many people know about the beautiful 17 year old girl who just died from the Gardasil vaccine? In fact, many children have died from that vaccine or been paralyzed.

Or the kids in South America who are FORCED to be vaccinated though many are dying from the vaccines (a test vaccine)?

We are being lied to every day. We outlawed the cigarette commercials, we need to get the damned drug company commercials off the television, as well. But, they are TOO POWERFUL.

I don't know about you, but it's getting harder and harder for me to feel safe.

I just got an email from an autism society in Tennessee talking about the link between MSG and obesity, and all of the crap in our food that is allowed to go by a different name but is still the excitotoxin MSG...or how about the fact that many known toxic additives don't have to be listed at all?

I tell you, I don't know what to do. Someone referred to this age as the holocaust for our children.

How many? How many have to be hurt before someone hears us?

I THANK GOD each and every day that I at least have a supportive family, that I at least have a DAN doctor I have the privilege of complaining about when I think he is not doing the right thing for my son, or I am confused because the literature and what he is saying do not match up, or that my husband can work his butt off just so we can afford to even talk to a DAN doctor.

How fortunate am I that I am at least walking on what I believe to be a path toward recovery?

It's still the parents who are helping each other. But, as I have heard said so many times before, we don't want any more families in our club.

Still, I will cry a river for all of our children and the parents who are left to try to clean up the mess.

Simmering

Camp will be over in another week and a half! I cannot believe it has flown by. Unfortunately, Liberty has just started responding to their methods. But, I am grateful to have had a place for him to go with the intense one-on-one instruction. He will be off for two weeks in August and school will start up once again August 18.

I observed in his room today, first for a 15-minute circle time, and then at a table with intense one-on-one instruction from his teacher. We have been blessed to have such a wonderful woman involved in Liberty's life. While the camp has been greatly disorganized, and communication seems to be off (for instance parents receive memos that the camp coaches and teachers do not - makes for some very confusing situations), we have met this woman who is Lib's camp teacher and I just love her. She is so dedicated to bringing out the best in Liberty and seeing what he can do. And, of course, the teacher makes the difference. I just personally like her a lot, as well, so it's all to the good. She is a person with whom I will want to keep in touch, and so you can't ask for anything better than that.

But, it's funny to see Liberty now so focused sitting quietly at the table matching and doing things he is asked to do, high fiving the teacher and then watching him come home and just flop. Well, home is supposed to be a soft place to land, so perhaps by just playing with us at home he is still learning. You can't structure every thing in their life.

My sister and I were just talking about this the other day. She said, remember doing nothing as a kid? I remember lying around in the grass making clover and daisy chains with my little friends, and cloud watching. We had timeout and it was so necessary. Just time to be, and to assimilate all of the things we were learning in our structured days of school. Just time to simmer awhile.

After camp, I think we will just hang out, watch videos, go to the movies, the beach and pool and get it all out of our system before we have to buy our new school clothes so soon.

Reminds me of this poem from long ago:

"LEISURE"

What is this life if, full of care,

We have no time to stand and stare.

No time to stand beneath the boughs

And stare as long as sheep or cows.

No time to see, when woods we pass,

Where squirrels hide their nuts in grass.

No time to see, in broad daylight,

Streams full of stars, like skies at night.

No time to turn at Beauty's glance,

And watch her feet, how they can dance.

No time to wait till her mouth can

Enrich that smile her eyes began.

A poor life this if, full of care,

We have no time to stand and stare.

By Wm. Henry Davies.(Wm. Henry Davies (1871-1940)

Heavy Metals Revisited

Liberty's repeat urine metals challenge came back very high for lead. About three and a half times the norm. I am waiting to hear from the doctor's office today about how to proceed. My appointment was cancelled when Lib's doctor got sick himself and they could only reschedule it for another month out. In the meantime, I had been calling and leaving messages to find out about all of our labs we had done, including the urine metals challenge. I wanted a repeat because Lib was not anywhere near potty trained when I tried to collect the first one and I knew it was not much of a sample that I managed to get, and probably rather dilute. This time, he was able to sit on the potty for all of the times I collected the urine.

And, I've always known he was full of metals. I've just been waiting, doing all of these other things like dealing with yeast and Vitamin A levels, jumpstarting methylation cycles and sulfization cycles, getting the bowels moving, upping the nutrition from supplements. And, in the meantime, dealing with school placement, all of the IEP's, therapy and theories.

But, always, I've been thinking, pleez already, get the metals out of my boy. I know that Mercury is the main culprit and always has been. I know that the double round of antibiotics right after the MMR pushed my son's little body right over the top. I know it all takes time to restore balance.

(And what of our environment here in Florida - the air quality the worst in the nation, the polluted water, the polluted fish, the Super Fund sites - did that play a role in the whole toxic set up?) Sigh. More theories. More speculation.

It's been exactly one year since we trekked to New York to see the doctor. Two years since I saw a doctor in Arizona who was not a DAN but got my son started on supplementation. One year of methyl-B12 shots. Five months of clearing yeast.

If anybody's ready, it's me. Let's roll.

Happy Birthday Liberty Marshall, the Love of My Life, 6 years old today.

You are a beatiful spirit and loved by so many.

Plastics - Safe or Not?

My sister forwarded an email to me saying not to drink water from bottles that have been sitting in a hot car. The e-mail makes reference to Sheryl Crow getting cancer this way, and that the hot water bottles are apparently more toxic for women. I don't know about that, but I do know many plastics, especially water bottles, are harmful to drink from.

Snopes calls this an urban legend, but I have been hearing for a long time now about how plastics are unsafe. Who do we believe? Are we all wrong? Where do we get the best information ? We are all so good at using Google, but how do we know the information we gather is correct?! This is what is frustrating about the Internet.

The hot plastic supposedly leaches cancer causing chemicals into the water. Hot or not, I thought that most plastic water bottles leach chemicals and that many other plastics do, too. I have just found out that the Gladware I was using to freeze Liberty's food also leaches (according to an article I read). I did not know that. I always heat up the food in a porcelain ramekin that I send to school.

I think I posted at one time about levels of a chemical called BPA that is unsafe for all of us and is found in common plastics. You definitely should not microwave in plastic. We have been hearing this for a long time now on television shows and newscasts.

Here is a website that helps explain the harmful BPA's and what kind of materials to use, what plastics are safe, etc. I think we can trust the website...but who knows for sure?! Someone email me!

Here are the bottles I use for Liberty that we love so much: http://www.kleankanteen.com/ I know I can trust stainless steel...I think.

After over a month of craving Finding Nemo, Liberty has now moved on to Thomas the Tank Engine. He watches with the sound mostly off, since he covers his ears. (Don't know why). But, he laughs out loud...again, like he gets it for the first time.

* Sigh.* If only someone would explain it all to me.

But, that's not possible, so in the meantime, I bury myself in books, hoping and praying that the next 4 weeks of camp will be good. It's been a slow start but at least he is getting one-on-one right now. More on camp as it develops.

I'm almost finished with the new book, "The Art of Racing in the Rain." This story is told from a dog's perspective. I've never read anything like it! I'm 3/4 of the way through and loving it. Turns out, it's really a very spiritual book. It is both funny and sad, and it's great writing.

On another note, I was supposed to have a follow-up phone appointment with Lib's doctor but the good doctor got sick. (They called me after I waited patiently for an hour and a half). It was to be re-scheduled but now I can't get an appointment for a month! I am not too happy about that. I'm really quite anxious to know what the heavy metals test results are and to get on with chelating. Just get on. with. it. I've read so much about chelation that I am really confused. Everyone has their opinion about the correct way to chelate. I feel lost in biomed at the moment.

Ah well, in the meantime, the summer wags on. Hope you're having a good summer.

American Spirit

Check out my sister's new blog.

Skippyjon Jones

Is This Cute As Hell or What??

From School Library Journal:

Kindergarten-Grade 3-This is a wildly wonderful book about a hyperactive kitten, Skippyjon Jones, whose head and ears are too big for his body, and whose imagination is too intense for his mama. According to her, he needs to do some serious thinking about what it means to be a Siamese cat instead of a bird (Skippyjon always wakes up and eats worms with his feathered friends). She sends him to his room, where he imagines he is a Chihuahua ("My name is Skippito Friskito./I fear not a single bandito"). Chock-full of rhyming chants and Spanish expressions, the feline's adventure as a doggy Zorro ends in chaos. His frazzled mother gives him a hug anyway and says, "Say good night, Skippyjon Jones." "Buenas noches, mis amigos," says the kitten, as he bounces on his bed all ready for another adventure. The buoyant and colorful cartoon illustrations match the exuberant text perfectly. Spanish-speaking children will be especially delighted by the words and humor; others may be a little bewildered by all of the foreign phrases and will need some explanation, but the story definitely has the potential of a fun read-aloud. A good multicultural offering.

This is our nickname for Liberty - it really has stuck. Sometimes it is transformed into SmileyJon Jones, or HungryJon Jones, or SillyJon Jones.

Silly parents.

Another Good Read

I just finished reading this book, "Unaccustomed Earth," and I really could not put it down. It is a collection of short stories but they each have a common thread and all involve characters from India. It's one of those books where you stop occasionally and ponder what one of the characters said and you relate so well..."oh, God, I get what she means..." You know that type of book. I handed it to my sister the other day and she called me thanking me profusely, saying she could not stop reading it either and had not read such beautiful writing in a long time.


So, I must have her other books.



Her first book, "Interpreter of Maladies" won a Pulitzer Prize. You can read about her and that book here.



Her second book, "The Namesake," was made into a movie in 2007. I never saw it.


She also happens to be absolutely gorgeous.

So Much Remains to Be Seen

I got a lift this morning from a fellow blogger friend after reading her post about some advice she got. I told her I was going to write down what she said because it really increased my hope.

An update on my camper. He was out sick, unfortunately, last Thursday and Friday with some kind of a stomach bug that was going around the camp. He recovered pretty quickly and this weekend we started a new preparation of his methyl B-12 shot. As a matter of fact, it is a preparation called methylhydroxy B-12. Now, it's hard sometimes to distinguish what behavior is linked to a new biomed strategy or rather a result of something else, but he seems much calmer and we are getting some very nice communication from him.

For example, at school last Wednesday, they were thrilled because he said three words. At home the other day, he brought me a bag of chips and said, "Cheeup." This morning he went to the refrigerator to find his water bottle and he said, "Whah, whah, whah." I have taught him to tap his chest twice for "I want," and then point to what he wants and he will do this with very little cues. Pointing is a new big deal. He does not drag you so much from place to place. And the eye contact and engaging factor has increased.

So, though I got down like I always do this past weekend (I constantly respond to thought 'my son is going to be six years old this month and still he is not speaking to me'), I do believe he is coming along.

And, of course, I can't talk about him without the subject turning to potty habits, but today, he sat on the potty and moved his bowels. Oh My God. That is really a big deal!

Note to people in a similar situation as ours, then: It's so darn easy to get down and respond to what we are observing or what we THINK we are observing in the moment, but we forget that our children have their own potential, their own timetable, and we really cannot predict the future. We could save ourselves so much trouble by stopping imaging the worst case scenario all of the time, and try to at least put a little space around our children and our expectations for that X-factor...the sudden growth spurt, the good things that can happen we can't even begin to imagine.

I think that that space I am talking about is LOVE.

So, yes, so much does remain to be seen. Thanks, my friend.

Endangering "an entire generation of children..."

If you missed this over at The Age of Autism, it is a wonderful article written by Katie Wright.

Also, while searching on Google for a developmental pediatrician who is supposedly becoming a certified DAN doctor in our area (miracle?), I ran across this site by Dr. Sears, listing the "vaccine friendly" doctors. Thought it might be of interest to somebody.

Evening

I'm sure you've seen Evening. The book was wonderful. As always, they changed the details of the book to fit the screenplay, but they did a beautiful job. BUT, this movie is fast becoming my favorite, even up there with Enchanted April. It's a beautiful movie. If you haven't seen it, check it out. It's one I've watched over and over, especially since HBO is running it right now.

They Believed in Me...

This is a great video of Raun Kaufman, the person around whom the Autism Treatment Center of America was created. He WAS a child with autism!

If you don't know about the Autism Treament Center, you can also check it out here. Notice there is a place called "Webinars" to click on and watch a video.

The other day, I watched a wonderful presentation via my computer given by one of the counselors of the Son-Rise program. The topic was on how to get your child to be more verbal. I learned more from that counselor than in all of my dealings with therapists and teachers. That particular video is supposed to be on there some time today. Thought you might want to give it a look!

Their main message: Believe in your child's abilities. Your expectations DO affect the outcome.

American Airlines Incident

This is yesterday's news but what do you guys think of this?

I'm sorry but my heart does go out to the mother. Liberty had a meltdown on the flight back home from NY last summer. He was exhausted and he could not help it. Everyone on the flight glared at me. Out of all of the people, only one man patted my shoulder and told me everything would be all right. We never fly anywhere with him, but this was necessary to get him to his doctor. I remember breaking down with him and crying as the people stared on and gave me angry glares. It was really a nightmare.

"A Place for My Stuff" - Rest in Peace, George

If you are offended by some rough language, you might want to pass this by; this is not the roughest he ever did, however. This is one of my favorites. George Carlin -he pushed the envelope and made us think. I'll miss him.

Camp at Last

We took Lib to his new classroom for Kids for Camp, the summer program for children with autism. As many first days go, it was somewhat chaotic with a lot of people wandering around confused, but Lib was ready. First, he was happy he got to ride in Daddy's big truck, which he will be doing every morning and then I will be picking him up around 3 PM.

Each child has their own teacher and gets one-on-one attention the entire day. They will be getting ABA training. Lib is undergoing potty training, and is also in a class geared for improving communication.

So, I am just relishing the quiet this morning. The house is a mess but I am glad to have made it through these last two weeks with my back and tooth problems.

And, the best part: I saw a dolphin in the bay on my way home. This has been a sort of recurring sign to me that all is well, for it is a rarity to see one that far inland from the ocean.

A few nights ago, I had a dream that I was contentedly swimming in the ocean. Then a thought occured to me that there was undoubtedly a great white shark that swam in the depths below me. Just as suddenly as I thought this, a pod of dolphins gathered around me, as if to support me in keeping my thoughts on only the good, the sensation of swimming in the water, and not on the fear of what might be.

Yep, dolphins are a good omen for me. :)

Unreal Images from Iowa

These pictures tell the story of what is happening to the heartland. Looks like Hurricane Katrina's destruction.

It's Been a Long Two Weeks

We are nearing the end of the two-week break between school and Liberty's day camp for autism. I feel as though I've been in a daze, just kind of sleepwalking through the days. Mercury went retrograde and when that happens, we always feel like we are backpeddling. It's supposed to be a good time to mend nets so to speak, tidy up, and put things in order until the energy gets moving again. My ability to do that was impaired when I hurt my back last week. Too much stress going on. Happens every time. This was particularly bad this time, though. I have been hunched over in a waddle I can only describe as the Mrs.Wiggins walk. In the midst of all this, I also had a tooth get really painful and found I have to have a root canal and crown. My husband just had to have a wisdom tooth pulled.

Geez.

Well, I suppose there are lots of good things to focus on that occured during this time. Lib got to know Nemo quite well. He has had a good rest from school so he can be better prepared for the intensity of the camp he is going to (9-3 every day with his own teacher and ABA therapy). I can't wait to see how he responds.

I just got back from a blood test I put off as long as possible that Lib had to have. I have some cream I rub on his arm to numb it. Worked like a charm the last time. This time, they had to use the other arm which did not have the numbing cream on it. He screamed like a banshee while my husband had him in a vice grip and I strugged to hold his arm. I felt so bad. He bounced back, but I didn't.

Why don't they have a bar on the way out of the lab lined up with shots of tequila? These things just wear me out.

This afternoon, we are going to the dentist to get his teeth cleaned. After that? I don't know but I plan on doing lots of lolling about. I'm just worn out.

Here's Mrs. Wiggins at her finest. Remember her?

From Nemo to Vivaldi - Liberty's Most Requested Video

For My Wonderful Sister, on her impending arrival...

Oh!

the

Places

We
Will

Go!

Just Keep Swimming, Just Keep Swimming....

It's all here...

Waiting

for

You!

Twilight

Never would I thought of reading any book about a vampire. "Twilight" was recommended to me by one of Liberty's therapists who read the entire Harry Potter series. She said she could not put the book down. It took me to about page 300, wondering at first why I wanted to read about a 17-year-old girl, and then...I was hooked. I could not put the book down. This is not blood and gore, not at all. It is more a love story and about a really interesting family. It's more suspeseful and entertaining than it is gruesome. I didn't even find anything about the vampire lore ridiculous or hokey. It was fascinating.

I had no idea about all of the other sequels, or that Twilight is already being filmed as a movie. The other two books are New Moon and Eclipse.

Critics are apparently calling Stephanie Meyer the next J.K. Rowling (author of Harry Potter).

Surprisingly, this was a good summer read!

What A Difference A Day Makes - Okay Make That Two Years

Yesterday, was a banner day for us. I had no idea what a gift the day would bring.

I prepared to go back to the same neurologist to make sure that my son was not having absence seizures. Two years ago, we went to a neurologist here and had an EEG done, only to be told by that neurologist that he did not know what it meant. There was an abnormal spike wave in the occipital lobe. I have documentation that says he did not know what to make of it. It left me feeling very odd; that the supposed "best" neurologist in town did not know how to read the EEG; I only knew that he found out we had seen a doctor in Arizona who had started Liberty on supplements and that I said we were seeing good results. As I recall, the supplements were things like Cod Liver Oil and Super Nu Thera vitamins. We had not done anything that would be considered back then "way out" like, God forbid, chelation. Basically, the neurologist was very nasty to me, saying he did not believe in any of that diet "crap." He said Lib could have a seizure, convulse and even die. He wrote a Rx for Diastat suppositories and told me that if he seizes to "ram it up his butt." I was dismissed. I felt abused. It was a terrible experience. I remember sobbing at home.

So, fast forward two years. I happen to have a friend whose child was diagnosed by a neurologist here in town, with whose name I was unfamiliar. She told me that he is apparently associated with the same office where we went two years ago. She told me to check him out as he is "open" to biomed treatments. I was skeptical but I got a referral and finally an appointment but not for a couple of months.

The other day, something told me to call their office and their was a sudden cancellation. We could get in the next morning! (insert twilight zone music here)

I went to the same crowded waiting room, had to fill out the same mountains of paperwork, depressed that Liberty would not sit while I balanced the clipboard on my knee. He kept touching everyone and making his noises and I thought, "Oh, it's bad. They are really going to tell me how bad it is now."

Finally back in the examination room, the door opens and in walks this 50s-ish, bronze-skinned man (from Brazil I later learned) in impeccable blue jeans and tennis shoes. He has salt and pepper hair and a well-trimmed beard and such kind eyes. He takes my hand in both of his and gives me a very sweet smile and thanks me for coming.

He motions for me to sit and he goes right over to Liberty and establishes rapport by playing with him and rough-housing, taking Lib's shoes off and stuffing them under his shirt, peeling his socks off and throwing them over his shoulder, etc. Liberty stops stimming and looks right at him. They high five. I am sitting in the corner quietly observing.

This man's presence fills the room. It is calming. I am safe.

He focuses his deep ocean blue eyes on me and the first words out of his mouth are, "You are the expert." I say, "Pardon..." He says, "Raising a child is like creating a work of art - or baking a cake, some we need to leave in the oven a little longer..." He goes on talking like this. I'm loving it! He says, "I want you to continue to do all that you are doing, because you know best, and you are doing GREAT. YOU are doing GREAT." He even talks about LOVE and SOUL. How I wish I had a verbatim text to recreate this awesome conversation. He even tells me that Liberty, like all children, is teaching us.

But, I'm almost fainting at this point when he says, "I am here for you and will be always. Anything you need, anything you think you might want to try, I'll do it. Any papers you need signed, anything at all, you can call on me. I am part of your support system."

I am rendered speechless.

Then he puts his clear glasses on and says, "I know why you are here." Now, I had not written out anything about my return visit only to say that I need to rule out seizures. He says he pulled up the records and the report of the EEG from last year. He holds it up in front of me and he says, "Spikes in the occipital lobe - are you kidding me? These are SO COMMON in all children. This means NOTHING. It is NOTHING." He tells me that with absence seizures, I would be seeing a lot of staring spells and goes on to describe things that clearly I have not seen.

I begin to cry, it's such a relief. He says he knows what I am going through and have been through and gives me a hug.

So we go on to talk about why Lib is not talking. He gets the chart of the brain out. I ready myself for a science lesson. Instead, he says, "Speech is in the left brain, so what do we do? We stimulate the right brain!" I innocently say, "We do? How?" He says, "MUSIC! DANCING! SINGING...SING IN A FOREIGN LANGUAGE, EVEN BETTER."

I told him that we were doing therapeutic listening with an OT. I told him about the Finding Nemo marathon Lib has been on and Liberty's sudden lurch forward in progress with scissors and pointing and saying "okay." He told me that kids do that, they plateau for awhile then they spike with new behavior.

I told him about the upcoming camp we have gotten Lib into. Turns out he is one of the people teaching the teachers for the kids autism camp at the university here! Is this not uncanny?

I float home. So many pounds have been lifted from my shoulders. I have to process this all day and night.

Wait - it gets better!

I looked him up on the internet and found he is a published author. There are two books on Amazon he has written!

Things are changing all around us folks. I have great HOPE.

OH...and he thanks ME for coming. He said, "No, thank you, I am honored."

World Mercury Project

A great website; thank God for people like these. I am so interested in Eric's story, I can't wait for the documentary.

Howard Hughes Medical Institute

For what it's worth, I thought this might be of interest to some of us.

I saw a piece on the Howard Hughes Medical Institute for biomedical research located in Chevy Chase, Maryland on 60 Minutes. Apparently, Howard Hughes created the institute as a tax shelter when the air force threatened to pull all of their contracts with his company. Unbeknownst to him, it wound up becoming a premiere lab for biomedical research, as their are billions of dollars available for the scientists to conduct research without having to apply for grants and fill out mountains of paper work that can impede progress.

Of course, I immediately wondered if there is research being done on autism. It was not mentioned in the story, so I went to their site and typed "autism" under their search engine and 87 matches returned!

I don't know about you, but this is reassuring to me. I have been upset that the government has not launched and funded massive amounts of research into various aspects of autism, including vaccines.

The story did mention quite a lot of work being done with stem cells at the institute.

I believe there is a place to email the scientists. So, perhaps it would be worth a few minutes to leave our requests and comments for these folks at what looks like a wonderful place.

Ah, Florida.

Some of my best memories took place in the limestone springs that Florida is pocked with; these are manatees in the picture on the right.

and the beautiful beach I live near now...

How To Tell If Its Summer...

PLENTY OF PESTO FROM THE GARDEN...

fresh basil+ olive oil + fresh parmesan + garlic + pine nuts processed to make a bright green paste

...fresh tomatoes for the top and poppyseed bread to go with it.

oh the heavenly aroma

- Okay, other than the fact that it's 98 degrees outside -

Pesto IS summertime.

P.S. (Susan there will be some waiting for you in your refrigerator...)

Green the Vaccines March June 4

In case you missed it, here are Jim and Jenny speaking at the rally. If you've already seen it and wept, feel free to pass it by. It's worth watching, but it also made me sick to my stomach to think my precious child is included in these numbers (1 in 150).

No IEP Casualty

I made it through Liberty's eligibility meeting. Basically, by law in certain states, before a child turns six years old, he has to be tested and given a label. The testing is for eligibility for continued services in the school system. Florida's law recently changed so that the previous label of DD or Developmentally Delayed could change to Autistic Spectrum Disorder. In many states, children are not tested until eight years old because of the big growth spurt that can occur.

At any rate, I made it through without crying, without becoming too depressed. I know that the tests are only snapshots in time of where we think he might be developmentally. We decided it was not necessary to change anything in the IEP we just did in April.

But, it's still hard. No first grade for my boy, just "primary" ESE class. The teacher and both assistants who adore Liberty will be leaving. Budget cuts have made rearrangement necessary and that's sad. I get used to folks and come to depend on the ones that Liberty adores.

On a brighter note, Liberty used scissors all by himself for the first time in OT - no modified scissors, no hand over hand. It's a pretty big deal!

We have an appointment with his doctor Monday and I am asking for chelation finally. I feel that the MB-12 shots have helped tremendously and that has helped him to detoxify from metals. I really want to try chelation. I'm looking over what Dr. Bock says about it, and also Andy Cutler. I would love to hear your experiences with different methods.

School's out for us tomorrow. I can't wait to see how Lib does in autism camp in 2 weeks.

I wish everyone a wonderful summer!

Nemo, the Teacher

So, an update on Liberty's Finding Nemo marathon:

I got a few very helpful emails from fellow bloggers about the magical qualities of this movie. I realized that Liberty was watching this movie again with new eyes, like he just "got" it, and indeed, I really do think that a light bulb went off and he understood it suddenly.

Since last week, he is able to point to the screen when I ask him to point out Dory, Nemo, Marlin, and Gil. Most significantly, I found him in his room with his old Finding Nemo book (when did we get this, 2003?) and he was poring over the pages.

He squeals with laughter and rolls on the floor slapping his thighs when Nigel, the pelican flies into the dentists office and all hell breaks loose. He is scared over and over again when the diver appears to take Nemo and when Nemo gets stuck in the aquarium filter...scared but thrilled at the same time.

He LOVES this movie, and he is learning.

All of his reactions are appropriate. More importantly, I see my child does indeed have language. Not actual speech yet, but he has language. In fact, his receptive language has increased. He is understanding! I can tell him that we need to get his socks and shoes on and turn around and there he is socks in hand. Last night I told him he needed to brush his teeth and he got up and took the toothbrush out of my hand. This is HUGE stuff.

Thankfully, I have been able to make the shift in my perception that children can learn in many different ways in their own time on their own schedule. I always thought I believed that until Liberty came along and challenged me to test that theory, and more to trust Life, that all really is well somehow, not according to the way I think things should be.

There are teachers everywhere.

Alex Barton

Here's an update on the news story everyone has been talking about. If you have not heard yet, a child with Asperger's was voted out of the classroom by his class in Port St. Lucie, Florida, encouraged by his teacher! It was a very heartbreaking story. Since this happened, there have been enough bloggers and emails to get this teacher re-assigned (how about not allowed to come near another child)? I've received a lot of emails about it myself but never posted anything, so click the link above to read about it.

Calling Dr. Bombay, Emergency! Come right away...

I'm at another one of those frustrating points where I just feel like I'm not the right mother for Liberty. Because, a Saint, I ain't. I wish I was all Mother Love and Pure Patience and Tolerance, but I guess everyone has their breaking point. Kind people will write to me and say that I just need a break, to get off by myself, to get a massage, etc. But, what I need the most is a change in perspective. Would that I could call Dr. Bombay (come on you remember from Bewitched?)

I'm a person who is really great at detail. It's why I'm good at my job. I pay attention to the fine points. I have the kind of energy some people might label Mouse Energy, which is the ability to see up close as opposed to Hawk Energy which is the ability to rise above and see the parts as the whole. I've said before that Lib is under the microscope like a lot of children who are undergoing treatment. Parents are always observing reactions to new supplements, lack of supplements, judging quality of poops, you name it, we're observing it.

But I'm too up close to Liberty most of the time. I don't have the ability to pull back and "put it all in perspective" like my mother used to say. This is where I need to lean on others to help me correct my vision. I'm sending out my SOS.

I do exercise gratitude, though. It's not that I cannot count my blessings. I am actually in the habit of that now. I don't lose sight of my blessings because it can always be worse.

I just cannot seem to find a good feeling place regarding my son. I know that I have to do that in order to obtain peace.

The thing I am having trouble with is acceptance of what is, because I don't know what "what is" IS. Does that make sense? Sometimes I think Lib is progressing nicely and I am kind of in this steady state, and then other times, I look at him and I think, "Oh God, he's going to be six years old, he's been under a DAN doctor's care for almost a year and...he's not progressed very far." Of course, I am measuring progress by speech. I'm telling ya people, this is starting to really get to me. I want to talk to my son. I want to hear his voice. I want to know what he feels. I want to know him.

And, as you can see, I think these depressing thoughts and then I react to them as if they are real. I am not unconscious about this process. I see what's happening.

Still, I cannot find that place of rest with What Is. Can I just order one of these?

At this writing, Liberty is in the kitchen eating his pretzels and making a kind of "whoop, whoop" noise. Prior to this he was eating his yogurt by himself which is a major accomplishment because he will even wipe his mouth with a napkin (wipe his nose with a Kleenex, too!) but then he can't resist mashing the yogurt that has glopped on the floor into the carpet and playing in it like he is a baby/toddler.

He came home from school and I knew he wanted to go watch Finding Nemo. It's his new favorite thing. He wants to watch it over and over again. I guess this is where I use the word "perseveration," or do I? Am I really obliged to use the lexicon of the autism diagnosis, really? Do I really give a crap about all of that anymore? My personal experience of Liberty has been turned into the lingo of the diagnosis. He "stims" and "perseverates" and has a "need for sameness" and doesn't know where his body is in space, and...OH GOD I'm drowning in the language of the disorder.

You know I was more at peace when Liberty was so much more mine - when he was not the property of the school system and the experts. So much mine.

I don't want to know the why anymore...(unless I find out he is having seizures after all and boom here's your medication and you're done - or was that a dream I had?)

Today, as I was driving in the car, I was thinking about this obsession with Nemo over the last weekend. My son loves the movie and I think it's one of the best animated films. It has no offensive soundtrack, and it's fun to have on because it is all underwater and mostly ocean scenes. I dig that, too. It's doubly fun for Lib because there happens to be a tv in our bedroom (not hooked up to cable, thankfully) that he can watch the movie on and he likes me to get in bed with him and hug him tight during all of the exciting and scary scenes. This is kind of cool - a new kind of sharing because he is looking intensely at my face and he is sharing emotion with me. ALL of that is great.

B U T ... as I stated before, I knew when he got off the bus, the first thing he wanted was for me to turn on the tv. I wanted him to go to the bathroom and sit on the potty. He can't talk, so he just gets intense and kind of holds me tight and makes a noise and a face that lets me know he is mad. I say no and tell him to go to the bathroom first, then we will put on the movie. He gets even more intense with me and that is when I just lose it and yell at him. He stops and looks at me with those big eyes and then I feel like the shrew of the year. The worst mother. But, he does go in the bathroom and he obeys me from then on. I don't strike him or anything. I just raise my voice but I'm at the point I want to scream bloody murder, do you know what I mean?

And, trust me I have screamed into pillows to God. Oh boy has God gotten an earful from me.

I'm SICK OF AUTISM. And, I do not consider anything about it to be "awe-some".

Sure, there are some children who are completely verbal with a diagnosis of autism and they will knock your socks off with their insights. That IS cool. But it is NOT where Lib is concerned. It's a constant heartache. And yes, I need to let go of that analogy because I get lots of pain in my chest.

These blogs that talk about encouraging neurodiversity and "leaving their kids alone" just piss me off. I think they are not still scraping poop off the walls. If they were, they might sing a different song. Autism ain't so beautiful then. I know in my heart of hearts this is mercury poisoning.

I thought when I had a DAN doctor, I'd feel better. But, the DAN is so busy, I don't get to talk to him much. When I do, it's just kind of a once over of the chart, and a few ideas to try...and another year goes by and my boy is still lost somewhere in it. [I even had a dream that we drove all the way up to New York to see the doctor and the doctor and the whole staff were smashed, just drunk as skunks. And I was so pissed! ]

The only hope that I can muster right now is that Liberty did get into an autism camp this summer. Not the sleep over kind, but a day school where he will be privileged to have ABA therapy all day long with one-on-one attention. We are having to do a fundraiser for the camp just so we could get him in because we could not afford the $4,000 it costs for each child to go. So many children made advances last year (for instance all of the children were potty trained after six weeks, some began speaking) that I was sorry we were not able to get him in last year when it was only $400. All of the kids that got in last year were automatically enrolled this year. We were on a waiting list.

Ah well, as another mom of a child with autism said, "What can you do? Life goes on..." I suppose that is the bottom line.

I feel the need for an I Love Lucy marathon coming on. Besides a couple of beers, it's the only thing that can help me now, I think!

Not to mention the love I get from fellow bloggers. I need you guys. Greatly.

The Amazing Bodymind

If anyone has had experience with the Feldenkrais method, please comment. I see that Anat works with children with autism, too. It has really given me food for thought today. I also saw on Anat's site that she taught a child to read by working with his body. Interesting.

The Story