's All I'm Saying...

The Eagle Has Landed!

I am standing at the hall closet getting out some towels. Out of the corner of my eye, I see Liberty brush past me and into the bathroom. He has his headphones on, a t-shirt and Spiderman underwear. I watch as he sits on the potty, pulls his pants down and not off, urinates, and pulls pants back up. I almost say, "Remember to flush..." but he beats me to it, turns around, high fives me, and runs back into his room to finish watching The Wiggles.

And, that apparently, is how milestones get reached. No fanfare, no trophies, no jumping up and down. Lib acted as if he'd been doing this for years. A switch went on and stayed on. Something somewhere synapsed.

I just stood in the middle of the hall with my mouth open.

And then I thanked God. Profusely.

How to be inspired to write...

Go Away Gustav

WANTED: Nice corner of the world to live in. Must have great services for autism and affordable homes. Must be far away from the path of any hurricanes as possible but not so far north as to get snowed in most of the year. It would be a bonus to not be in a tornado alley. While it would be lovely to live near water, would like to live nowhere near a flood plain. It would be extra nice to be in a community that supports locally grown food and organic products and is far away from any coal-burning plants or Superfund sites.

I am either:

a. Looking for the yellow brick road to Emerald City.
b. Sick to death of dogding hurricanes.
c. Tired of having Labor Day ruined by making "exit" plans.
d. ALL OF THE ABOVE.

On His Own

- Going into the bathroom and using the potty.
- Using a spoon by himself to eat the (previously dreaded) applesauce and pot roast.
- Following directions.
- Loving his new auditory CD for social/emotional/V O C A L support and saying almost sentences.
- Insisting on using a regular cup to drink from, filling it from the refrigerator door with no accidents (or naughtiness a.k.a. flooding the kitchen).
- Cleaning up any accidents of any kind.
- Putting away his toys and trash.
- Hanging up his backpack at school.
- Waving bye-bye and hello.

and it's only the 2nd week of school...

What a great start! The only pull-ups I buy now are the nighttime ones and they last at least a month.

You were right, Carrie. It does get better. :)

The Hope Rises Again

A Good Mantra

"There is nothing for you to go back and live over, or fix, or feel regret about now. Every part of your life has unfolded just right. And so --now -- knowing all that you know from where you now stand, now what do you want? The answers are now coming forth to you. "

"Go forth in joy, and get on with it. "

(quoted from Jerry and Esther Hicks and Abraham)

Liberty Report a.k.a. Film at Eleven

This past weekend has been so crazy weather-wise. The Weather Channel was wrong, predicting we would get rain in "biblical proportions." They actually said that.

Unfortunately, the rest of Florida and Alabama have gotten inundated with rain. I think Tallahassee, Florida got 22 inches of rain in one day! We got our supplies on Friday, cooked, and hunkered down to get through the weekend with predicted power outages and the possibility of the schools closing on Monday. The weather stations continued to predict the torrential rain and high winds up through Saturday night. Thankfully, all we got was a steady sprinkle of rain. Sunday turned out to be absolutely beautiful with the sun shining and a little wind. People with cabin fever burst out of their houses on Sunday to get out and circulate.

So, we had a very normal day yesterday, only to awaken this morning to tornado warnings and a report of nearby Mobile, Alabama receiving torrential rains during the night. Again, we seemed to only get the eye wall of this thing.

It's blustery, dark and overcast this morning with a tropically warm feel. It's lovely, actually. We need days like this to punctuate the monotony of the long late summer days here.

The weather predictions being so "off" reminded me of the way I am constantly in a position of theorizing about Liberty's experience. Because my son is not speaking yet, one can interpret his actions, verbal and nonverbal, 'til the cows come home, as they say.

Therefore, if my daily theories about Lib were put in the form of a weather report, it would probably go something like this:

Due to the MB12 shot yesterday, we are expecting clearer thinking and good eye contact, with few tantrums and possibly some puzzling unpredictable behavior. Since soy was given in the past three days, it is possible to expect a "bathroom event." A summery mix of squawking like a parrot and throwing items across the room may occur at times, followed by interludes of calm and quiet concentration when the therapeutic listening is employed. With conditions such as they are with the influx of new supplements, continued normal biological growth, and a sudden bout of willfulness, be prepared for any and all types of behavior patterns uncharacteristic for this time of year.

And, tune in tomorrow where I will be wrong again.

Film at 11, as they say.

Sent from Heaven

I use a lot of "props" to help me cope with stress - and that would be specifically books, movies, puzzles, crafts, etc. and MUSIC. My latest obsession.

Nature heals

The fairies dance..

When was the last time you laid in the thick, green grass and did some cloud watching? Me too, until today.

For Susan with Love

Seminole Wind

Ever since the days of old,
Men would search for wealth untold.
They'd dig for silver and for gold,
And leave the empty holes.
And way down south in the Everglades,
Where the black water rolls and the saw grass waves.
The eagles fly and the otters play,
In the land of the Seminole.

So blow, blow Seminole wind,
Blow like you're never gonna blow again.
I'm calling to you like a long lost friend,
But I know who you are.
And blow, blow from the Okeechobee,
All the way up to Micanopy.
Blow across the home of the Seminole,
The alligators and the garr.

Progress came and took its toll,
And in the name of flood control,
They made their plans and they drained the land,
Now the glades are going dry.
And the last time I walked in the swamp,
I sat upon a Cypress stump,
I listened close and I heard the ghost,
Of Osceola cry.

So blow, blow Seminole wind,
Blow like you're never gonna blow again.
I'm calling to you like a long lost friend
But I know who you are.
And blow, blow from the Okeechobee,
All the way up to Micanopy.
Blow across the home of the Seminole,
The alligators and the garr.

Nostalgia has it limits

It wasn't all good in the "good old days." Anyone remember this? I didn't.

School Daze

The school season started for us yesterday morning when the brand new bus pulled up curbside. These buses look like real charter buses and the backs of the seats are so high. The staff in charge of transportation won't provide a booster seat for Lib or let us get our own, so he cannot see out the window and we cannot wave good-bye to him. I'm none too thrilled with that, but he seemed to be okay with it yesterday; at least we were told he did well on the bus ride.

Since there were massive budget cuts this year, the start and end times for school have changed and everyone is disoriented. Lib has a rather long day, leaving around 7:30 and not getting home until around 3:15. Some kids don't get home until after 4:00, which seems absurd to me, but the buses have to be staggered since there are not enough of them to pick up the kids at the same time.

To add insult to injury, the teacher's budget for the entire year for the entire class is $200! It's laughable. So, we are looking for grants and asking for sponsors for Lib's classroom this year.

I hope that Lib's sleep schedule straightens out after this week. He is so wiped out that he takes a nap when he gets home, but only after he has a snack. He slept from 5 to 7 last night and was up until midnight. It's hard to prevent him from falling asleep and hard to wake him from a nap when he is so utterly exhausted.

So, we are a little dazed and confused right now, but nothing out of the ordinary! Soon, it will become routine and we will be in a comfortable groove once again.

A note of gratitude: Tropical Storm/Hurricane Fay spared our Gulf Coast this time.

No Child Left Inside

I have fond memories of being a kid and running wild in the summers. I mean, being let loose on our own, me and my best friend and our dogs, until we were called home by the street lights or a cow bell ringing. We had neighborhood games of kickball, red rover, hide and seek, swinging statues, volleyball, and badminton. We had no air conditioning in East Tennessee in those early days of the sixties, and we'd come inside panting from playing hard and drinking glasses of water from the tap that tasted so sweet. You'd only cool off after taking a bath and putting on pajamas and hanging out in front of the old fans that swung lazily back and forth throughout the night. We slept with our windows open. We knew the smell of fresh air. We were close to the earth.

These days, we are used to artificial environments and wonder at the smell of damp earth and fresh breezes when we throw our windows open in the Spring and Fall. I love the smell of my son's hair when he comes in from playing out in the yard. Such a striking difference from being inside all day.

Though I am not truly complaining about modern conveniences (we like our air conditioning in Florida where the temps reach in the 100s in the summer), I do believe as children we have lost the connection to nature that many of us older generations had when we were kids.

My older sisters speak of being free to roam all over the air force base when they were kids and my father was a pilot. I often wonder what it's like for children now who are constantly supervised, who have not known the excitement of planning adventures each day around the neighborhood, building forts (in my generation, it was secret hideouts), and climbing trees. We were shooed out of the house on beautiful days. Only rainy days were saved for plopping in front of the TV and watching cartoons.

When I was in fifth grade, my entire class went on a field trip up to the Blue Ridge Mountains which were not that far away from our city. We were away from home for one solid week. We divided into "teams" and did all of our learning outside. We were given journals and were required to remain completely silent for at least 30 minutes to one hour each day. We all had our own large river rocks to sit on during this meditation time that we chose ourselves in the middle of a beautiful running stream that meandered through the middle of camp.

I will never forget that experience.

There is an organization called No Child Left Inside that has been created to allow children to reconnect with Nature as their natural classroom, and to understand the importance of their role in helping preserve it and to foster a love for it. Thought you might want to have a look.

Get 'Em Outside Video

Four More Days...

...until school starts. Hallelujah! I love my boy and everything, but okay...he needs the structured environment and I need the T. I. M. E. to myself. And to be able to work and make more than 5 cents.

It's coming, I know it. Lib has made profound changes this summer. I am grateful for it all.

Yesterday, he tested the limits though. He just could not leave the water in the refrigerator door alone. I can't tell you how many towels we went through. I can now say, "Clean it up!" and he gets a towel on his own and cleans it all up. Also, he likes to take his sippy cup and spit the cold water all down his chest, then try to get ME to take his wet shirt off.

These things happen in the blink of an eye. I take a phone call. I walk to the laundry room. I check an email. It's so fast. I turn around and there he is soaking wet, AGAIN.

He's just plain bored.

But, he's eating better, he's signing, he's going to the potty, he's understanding so much more.

He's ready. And so am I!

A sweet good-bye to the last days of summer. Bring on Autumn!

The Work

Are you guys familiar with these interviews by Oprah on XM radio? They are also on her website. You can use the drop down list to listen to some fascinating people. One of my favorite teachers and incredibly interesting person is Byron Katie. What she calls "The Work," has helped me untangle many uncomfortable feelings, especially in regard to my son's issues.

Check out Oprah's Soul Series.

Rainy Days and Mondays

Nothing like playing in the cool, gentle rain and taking a nice hot shower afterward! Yes, showers are Lib's new thing. No baths for this boy.

Be in the World, Not of It

Angry and frustrated again, I remembered these words this morning that are attributed to Jesus.

This morning, I had an onslaught of emails mainly from a yahoo group about the dangers of a carcinogen produced in potatoes at high temperatures and Kettle Chips seemed to be the worst offender. The ones that looked the most healthy. The ones my son loves to pieces.

I really have finally had enough.

There are many, many benefits to the Internet, don't get me wrong. I've done lots of searching on Google, made many online friends, had access to chat groups and newsletters, and lots of online ordering - my favorite being Amazon.

B U T

I have also invited a lot of unwanted vibrations into my life, mainly of the fear-producing kind.

Each and every day, I hear about the dangers of this, the carcinogen in that, and how our food supply is being poisoned, etc. While I do not want to bury my head in the sand, honestly, folks, I was a much calmer, happier person when I relied strictly on my own internal compass about what was best for me and my family's health. The constant bombardment of what we classify as "information" is beginning to be detrimental to my health.

I spoke with my sister about this today and we agreed that we need to have a certain amount of discernment about what to listen to, what to watch, who to believe, and that discernment has to come from within ourselves.

I believe we are living in a world now that requires us to rely increasingly on our own internal compass, our own intuition to live the best life that we can. We just can no longer rely on the media to represent the truth. That is Old World thinking.

What crossed my mind this morning are the folks who smoke and live to be 100, or the ones who are addicted to say, Tootsie Rolls, who never develop diabetes or obesity. You know what I'm talking about. We are all put together differently, and what we think about, what our disposition is to Life really determines the quality of it. Period.

There is no cookie-cutter, one-size-fits-all approach for all of us. What we think about every day and how we ALLOW ourselves to feel matters to our health, too.

So, whether or not some food is good for us or not, I just really don't know. I don't have access to the actual research that some claims are purported to be based on. Think about these tidbits of information we get on the national news, "studies show..." What studies? We are never told where most of this comes from unless we sit and Google for hours.

Meanwhile, my life is waiting...

I was happier when I lived my life without the bombardment of so much information, most of which is negative!

In a similar vein, my sisters and I were discussing how much fun it was as children to sit on the floor of our parent's home and flip through the Encyclopedia Britannica. I remember I loved the sections on dogs of the world, and costumes and dress the best. When we wanted information, we went to books. Our minds focused on one thing at a time.

Now, all we have to do is Google a word and we get 500,000 pieces of information returned. This is too much for our brains, I feel. It's ridiculous. We don't even know what the best piece of information is, unless we rely on the "I'm Feeling Lucky" button. Can you get how insane that feels?

The bottom line for me now is, I have to wind my way through all of this information now, deciding what I will listen to, what I will "plug into," and what I will discard. Separate the chaff from the wheat. And, all the while, setting the deliberate intention to feel good, to find things to appreciate, taking into consideration that an integral part of my health is the way I am thinking about it right now.

Yes, sometimes the world is way too much with me. But, I have the remote. I can choose a different channel.

What She Said

My friend Michelle has said beautifully what I have been feeling for a good while now. I have gotten so much mail - some saying how dare you think I need to recover my child - some saying I'm not doing biomed enough or right!

So, today, I let Michelle be my voice.

Go!

It is very interesting to me how Liberty has gotten the idea behind the sign "go" and it's various meanings and applications.

Imagine this: The sign for go is to roll your hands and arms around each other, like when you do the pattycake song.

When Lib really wants to go elsewhere badly, he does a BIG ROLL of the hands, like the robot in Lost in Space - "Danger, Danger Will Robinson!" The more he has to wait on me, like when I am talking to a teacher, the bigger the roll of the hands. It's so cute, we just all crack up.

When he wants the car to go after we stop, obviously, he signs "go." That's normal.

But, if I point to, say a bag of pretzels, and ask if he wants one, he signs, "Go!" In other words, in this case "go" means "Yes! Do that, keep going and unzip that bag and give one to me."

The funniest thing I've seen is when he's sitting on the potty waiting for his stream to start, and in the meantime, he signs "go" to himself! A little self-encouragement never hurt anybody.

Think about how we use the word go, even in slang, "And, then she goes...then he goes..." meaning "says" but it seems so natural to say "go."

Also, he has learned that when he wants me to leave the room he signs "go" and then waves me away, for "go away!"

I just wonder at the process of language and how Lib can use his hands and make one sign and realize it has many meanings that were not taught to him.

I really get now that he has language but not speech. Yet.

So much remains to be seen.

I'm a Believer

Well, it's been four days since I took Liberty off of casein; specifically milk-based yogurt. I have not seen one episode like the ones I was witnessing that looked like some type of seizure or brain blip. KNOCK ON WOOD.

Also, I just realized Lib is probably going through a type of opiate withdrawal since he has had a few interesting fits "out of the blue."

Here's a refresher on how gluten and casein proteins can affect brain function:

"...a note on the opiate receptors from Great Plains Laboratory:

The peptides from gluten [gliadorphin] and casein [casomorphin] are important because they react with opiate receptors in the brain, thus mimicking the effects of opiate drugs like heroin and morphine. These compounds have been shown to react with areas of the brain such as the temporal lobes, which are involved in speech and auditory integration.

Children with autism frequently seem addicted to wheat and dairy products. Presumably, people with Autism and schizophrenia incompletely digest wheat and dairy products. These incompletely digested peptides are then absorbed into the body and bind to opiate receptors, altering behavior and other physiological reactions."

I first placed Liberty on a gluten free/casein-free diet May 7, 2007. It was around the end of April of this year that I began to re-introduce the yogurt into his diet and I really did not see much in the way of reaction. I thought I was safe because I was also giving him an enzyme to help digest the food. But, apparently, the casein can have a cumulative effect. So says Dr. Bock. His words, "You'd be surprised at how nasty casein protein can be."

Well, we will see. I am hoping this is it so we won't have to go on an anti-seizure medication, especially since we were unable to obtain an EEG. And, he seems so much more with it, especially today on his first day back to OT and Speech. And, wouldn't it be nice if it was something SIMPLE for a change?

My blogger friend Robin has been so gracious in helping me collect GF/CF recipes to try.

If anyone has any great tried-and-true meals, send 'em my way, okay? Thanks and I'll be happy to return the favor with my tasty but extremely limited repertoire of gf/cf foods.

How I keep my sanity

We're Okay

Lib has recovered from his ordeal. It took a long time for the Benadryl + chloral hydrate combination to wear off.

In the meantime, I am sitting here waiting for his doctor to call for our follow-up phone appointment, and he is in his room quietly dismantling it.

Liberty has developed a sudden penchant for showers. No baths.

He loves Herb Alpert.

He loves Mr. Potato Head and he goes around with Mr. Potato Head's sunglasses trying them on all of his stuffed animal friends. This is new. He suddenly knows his body parts.

And, Kettle Chips are the bee's rollerskates.

At least for today. Maybe for three days. Then he will be onto something else.

I am disoriented today without camp, being in between school, and the solar eclipse.

More later, but thanks for all of your support and concern and general good energy that came our way. I can always count on it and I appreciate it so much.

LOVE.

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.