"Huh-cane"

Yeah, no one from Discovery is banging on my door for my underwater photography. Believe it or not these were actually the best of the goofy shots. We don't have a waterproof camera but my brother gave me the idea of sticking my old digital camera in a clear Ziplock bag to get pics of Dana underwater. We were bored. It was fun.

The weather's starting to get too cool for the pool. It was up to 82 today. Hoping it'll be warm enough tomorrow to get it up to 86 or so with the solar heater and the kids can sneak in another dip or two before we take it down.

The past couple of days, we've been seeing Alex's expressive language come back. He's stringing multiple words together and all of that completely without prompting. The problem though seems to be he's saying it so fast (and some of his articulation is still garbled) that I can't make out what he's saying. He's actually had to repeat himself once or twice before I get it. Most of the time though you can understand what he's saying.

Like I was in the kitchen talking to Daddy the other day and Alex comes in, "Cookies, pease... cookies (stands there looking at me)... I said I want cookies, pease." I got him a few of his Kinnitoos "oreo" cookies and he took my hand. "Huh-cane DVD!"

"What?"

"I want huh-cane DVD." We have a DVD of a Nova special on hurricanes that had been sitting on the shelf for some time. He went through a "hurricane" phase when we lived in NY when he was 4 so I got him this DVD back then. Do you realize that from space a hurricane looks like a big flushing toilet? Then there's footage of lots of wind, lots of trees blowing in the wind, flooding and rough ocean surf... how could he not love it? We hadn't watched it in a long while. He's never even said the word "hurricane" so it took me a few seconds to make it out. Usually he just wants help setting it up then he wants to be left alone to watch (and rewind and fast forward over and over again to all his favorite scenes) but he grabbed my arm this time.

"Stay. Sit. Stay."

So, Mommy-and-Alex-time, curled up on the couch to be potatoes and watch Gilbert wreck havoc in the Gulf in '88.

"Cut hair!"

"Good morning. Shear Fun."

"You guys are used to children screaming, right?"

The woman on the other line laughed and assured me, yes, her hair salon (that caters specifically to kids) had seen the worst of the worst.

I'd been avoiding it for weeks. Alex was in dire need of a haircut. So finally sucked it up last Saturday, dragged his father along insisting that we would need another pair of hands to help hold Alex down, and went to a kid's cut place in Monroe where I hoped the woman who cut his hair about two years back had either left or forgotten about him by now and, vice versa, Alex had forgotten the place himself.

We went in, saw the "barber's seats" that looked like those kid-rides you stick 50 cents in and they wiggle, rock, whatever for 2 minutes. Kids normally love them. Alex got this panicked look on his face. Oops.

"How do you want it?" the woman asked.

"Short. Fast."

10 minutes of buzzing, snipping punctuated protests and the picture here was the result. I swear it is a huge improvement compared to what it looked like when I tried to cut it myself a few days earlier. The alternative was a buzz cut which was vetoed by grandparents on both sides of our family.

During the cut, the owner was telling me that they do get a lot of autistic children. And in fact, there is an assisted living community not far away and they do the hair for many of the people from there.

And Alex emerged none the worse for wear. That evening, after his bath, he saw himself in the mirror as I got his pajamas on. He tried smoothing down what was left of his locks (sticking up all over the place) and started laughing hysterically at his reflection. I guess he likes it!

"It's the most wonderful time of the year...!"

Anyone remember that Staples commercial where a dad is gleefully flying around the store, filling his shopping cart with school supplies while his two children look on sullenly?

Dana and Alex are, however, happy to be back in school. The kids went back on their buses for the first day of school yesterday. Alex actually giddy with excitement as he climbed aboard (the pic here is where he's getting off the bus to come home... notice the comparative lack of enthusiasm).

It was wonderful to see his driver and aide are once again Cheryl and Patricia. The special ed kids have to be on a bus (short bus) with an aide and they're not allowed on or off by themselves since either they can't (wheelchair) or, like Alex, there's the possibility of them running into the street (which he did try once but I grabbed him in time). And there are frequently drivers on our stretch of road who do not stop for a stopped school bus (lights flashing, stop sign out, etc.) and will even go around the bus to pass. #@!$%! Note we are also in a 25mph school zone (which no one pays attention to either). Other houses along the route have filed complaints but the police won't do anything (though one officer openly admitted they know "it's a bad area") and will probably wait 'till a kid gets killed before something is done.

Dana's driver this year is Michael. She was hoping it would be Dirk, who likes to make origami animals and things for the kids, but I'm just happy it isn't last year's driver, Elizabeth Ann, who was downright nasty, seemed to ignore the schedule and come and go when she felt like it. It pissed me and a bunch of parents along the route enough that we took the kids off the bus and just drove them to school ourselves.

Ok, ok. Other parents have to worry about school shootings, gangs, etc. All we Redding moms have to complain about are the bus drivers.

Rant over.

School's in session and I have (I hope) more free time! Yayeee!

Cannonball

Ok, so, this isn't a picture of Dana doing her cannon ball into the pool at the Mystic River Yacht Club but I couldn't get a decent shot of that. This was Friday after her last watercolor class and before our heading back home. The pool was too cold for Alex to do more than step into it up to his ankles but he was content to play with the water shooting out of the spigot.

Ahoy!

I thought it had rained much of the time we were in Mystic but actually the weather had been nice enough that the kids did get to be on and in the water a good portion of it. Thursday, off they went again with grandma and grandpa. And, yes, no one fell off the boat.

Meanwhile I got to sneak off to browse the shops on Main Street... I was good... 'just bought two books from Bank Square. One was Perfume by Patrick Suskind (the movie also already out on DVD... I wanted to read the book before watching the movie but from what I hear both are pretty amazing) and the other, The Priest's Madonna by Amy Hassinger (a fictional story revolving around the priest from Rennes-le-Château who supposedly found out the whole secret behind Mary Magdalene). Yes, ala DaVinci code for those who just can't get enough of the whole Dan Brown phenomenon. I actually did have my fill of the DaVinci code thing but the few pages I skimmed over seemed well written and it's supposed to be told through the eyes of the priest's housekeeper and *gasp* lover. Well, color me happy, I needed some fluffy reading.

Dana's watercolor paintings

These are my favorites out of Dana's work. Flowers, dragonflies and... some kind of branch with leaves. Eva said she had shown the kids a technique for loading the brush with two colors (you can do three or more actually). I wanted to stick around to watch but they kicked the parents out once the class started.

Drat.


Deeply intrigued by seeing how quick, simple brush strokes can create something exquisite. It's very different from my style, which is heavy on line and detail (though I'm sure there are artists who work with the medium who have very detailed paintings). For now, I want to explore this more minimalist approach to art. I ordered two books on Chinese watercolor painting from Amazon.com (one by Lian Quan Zhen and one by Jane Dwight) and can't wait to give it a shot.

Catching up... Watercolor Wednesday

I know, I know. I'm way behind, but just haven't gotten a chance to be on the computer long enough to put anything up.

Our week with the grandparents also included art classes at the Mystic Art Association. She took a class on Chinese Watercolors with the artist Eva Leong. Featured here is a piece by Eva (not by Dana, but give her time :)) with 3 goldfish. Dana came home with a number of works on rice paper that will absolutely be framed and put up around the house and some put on the blog soon as I find my bloody scanner.

Eva made me smile when she talked about where she was going with her artwork and where she wanted to take it. I don't mean galleries (though that helps a lot I'm sure) but in terms of artistic vision. She said she had been working on a series of oils where, upon simply looking at the painting, the viewer would hear the music behind the piece. Now she's working on a series based on scent... the viewer smelling as well as seeing the artwork. You know, make synaesthesia more accessible to normal people without needing to turn to hallucinogenic drugs or rewiring brain circuitry.

Music Monday

Alex has a new lady love. K.T. Tunstall. It was entirely my fault. I decided I liked the opening song by her ("Suddenly I See") in the movie "The Devil Wears Prada" and got a hold of the singer's cd Eye To The Telescope. After hearing it at least half a dozen times on the car's CD player (even mommy can listen to Celine Dion only so many times and don't even get me started on Enrique Iglesias) Alex came to recognize the siren's music enough that when grandma put on a DVD of some of her videos, he peeled himself off You Tube and came crashing down the stairs to come and watch. And watch he did. Absolutely enraptured. I don't blame him. The chick (in my professional, artist's opinion) is hot.

Throughout the summer, the Mystic Chamber of Commerce sponsors concerts on the green. Every Monday night from 6 to 8, they set up a live jazz/blues band at the river's park (which is conveniently right across the water from grandma and grandpa's deck... balcony seating for a live performance... someone pass the wine). Alex, giggling with glee, sat in his grandpa's lap as they listened to "Walkin' to New Orleans" (Fats Domino) performed by Room Full of Blues.

Grandma and Dana crossed the bridge to join in the festivities. Dana ran right up to another little girl and they boogied 'till the sun went down.

Esker Point, Groton, CT

We spent the (windy) afternoon at Esker Point, a small but sweet stretch of beach on Fisher Island Sound (northern part of Long Island Sound). Being that it was brisk and unseasonably cool, we had to jostle for spots to put our blankets. There was a veritable stampede of two other families we had to fight to get to prime lounging space under perfect, cloudy skies.

Ok. So, there was practically no one there but Dana managed to wrangle up friends to play with (that's her with Georgiana all the way in the background). And 3 brave (some would say "crazy") souls ventured out to wade neck-deep in the gray, New England water. One of them, not surprisingly, being my daughter. Alex, a much more cautious creature, took his time getting used to the surf washing over his feet. By the end of the afternoon, his shorts were soaked. But, he only bolted for the bathrooms once and when he realized the ocean was much more exciting to observe than any old potty, he happily remained by the water and grandma didn't have to chase him back and forth across the sand.

Dana's take on Sunday's activities...

I went on a dingy ride on the Mystic river with daddy and Alex. It was cool. We went under the bridge. I saw little fish. I didn't see birds this time.

Then we went to the pool at the Mystic yacht club with grandma and grandpa. I made a new friend Hannah. Hannah, Hannah's sister and me played monkey in the middle in the pool. I did the pencil dive and a cannonball and swam to the 5feet deep water. I am a good swimmer!

We had hamburgers for dinner. I love hamburgers with cheese.

"I'm sailing!"

Alex has been waiting for this moment all year.

We're at grandma and grandpa's for the week. The kids haven't had much of a vacation this summer since Dana had camp and Alex had summer services since the Spring term ended. So, the change of scenery was welcome. It is, after all, the end of summer and school starts again soon.


And Mommy and Daddy are always thankful for the extra helping hands. Free babysitting! We can actually go out for dinner or a movie. Though Daddy might fall asleep in a movie theater. So, Mommy will have to wait 'till "Becoming Jane" comes out on DVD for her period drama "chick flick." We haven't seen a movie since "King Kong."

Anyway, Alex was "so happy he could just spit." Especially since there are two heads on the boat (itty bitty bathrooms) and he had full access to both. Given they don't flush the way a normal potty flushes but he was in heaven just being able to stand there and look at them. So, he spent the bulk of the trip below deck running from one potty to the other. At least we knew he wouldn't be able to escape anywhere down there.

He did finally come up for air and sat at the bow watching the boat cut through the water on the return ride back. Perfect day for sailing. Good wind and a following sea or something.

Dana decided to pass on this trip to get her "Star Wars: Return of the Jedi" fix.

I said, "You don't want to be out there? Sun on your back. Wind in your hair? Bugs in your teeth?"

"Not really. No." (increases volume on the DVD player to hear Chewbacca the Wookie's... what the heck do you even call that noise that comes out of his throat?)

What the heck to feed a kid on the diet...

If you look at labels in the supermarket, it seems just about everything has wheat, gluten (several other grains fall under the no-no list) and dairy and way too much sugar. When we first started (going cold turkey really is easiest... dropped the kids off at school, completely emptied out the fridge and cupboards, went shopping for replacements using a list of o.k. foods before they got back home) we had to either grocery shop without Alex or speed the shopping cart past all those aisles with the bad stuff (which at first seemed just about every single one except those with household cleaning products, toilet paper and the pet food aisle).

Eating out is near impossible unless you're lucky enough to be near a restaurant that would be accommodating not just about preparing food your child can have but are also careful about cross contamination. French fries baked or cooked in sunflower oil are o.k. but if it's the same oil they cook (wheat flour) breaded things, it's just as bad as eating the wheat product. Even soy sauce has wheat in it. Most hot dogs, too. Forget about snacks like cookies, pretzels. No more pasta (gasp!), butter, ice cream, cereals, waffles, yogurt, soda and just about every fruit juice, pudding, cheeses, milk... and you really should be avoiding candy anyway.

So, you ask, what the hell am I supposed to feed the kids???

Believe it or not, you do find stuff they will like. It takes a little time, some experimentation, some research and lots of label reading but you do find them.

First, when you can, buy organic. No pesticides, growth hormones, etc. Just about all veggies are o.k. on the diet. Some fruits are no-no. Meat, poultry, pork all o.k. I keep the kids away from fish (they don't really like it anyway) because of the amount of heavy metals in their flesh. This is more important for ASD kids as their bodies can not filter these out like a healthy person can.

So, yes, this will mean one will have to cook. No more throwing frozen chicken nuggets or fish sticks in the oven for quickie dinners. Restaurants and fast food out of the question (unless you can be sure that the local McDonald's and Burger King cook their fries separately from breaded items on their menu). Btw, many Outback Steakhouse and P.F. Chang's restaurants offer a gluten/casein free menu. Just call ahead and ask to make sure they have it and their cooks are careful about cross contamination.

There are replacements. This is where research and leg work come in. Places like Whole Foods and Wild Oats will have a huge selection of gfcf foods. Google the closest smaller health food stores in your city to find those. Usually the people in those (also health conscious) are more than happy to help with questions, even ordering products they don't have on hand for you.

Ok, so a list... (some makers will not be careful about processing wheat/dairy products in the same equipment as the gfcf labelled ones... you can supplement with digestive enzymes like Houston Nutraceutical's Enzymedica when in doubt)... and this is just a small list of what's available if you just take the time to look...

Lay's potato chips (salt, potato and sunflower oil only)
Rice Krispies
Envirokids cereals/snack bars (Amazon Corn Flakes, Panda Puffs, Gorilla Munch, etc.)
many Arrowhead Mills cereals like Maple Buckwheat Flakes
Tinkyada Brown Rice pastas (very good... Alex couldn't tell the difference!)
Mary's Gone Crackers (yes, I have)
organic tomato sauces
Kinnikinnick snacks (KinniKritters Animal Crackers, Kinnitoos "Oreo" cookies, Kinnikinnick chocolate chip cookies)
Glutano products (pretzels, etc.)
quinoa
rice
potatoes
popcorn (no butter)
Earth Balance Buttery Sticks (perfect for replacing butter in just about everything)
corn and corn products (if ok on it... same with soy products... get tested for allergies and food sensitivities)
some fruits
vegetables
meat, poultry, pork
bacon, eggs
Quaker plain/lightly salted Rice Cakes
EnjoyLife cookies
Silk milk and other soy products like their yogurts
Whole Soy & Co. yogurts
Pacific Almond/Hazelnut milk
Rice milk
Organic Rice Divine ice creams
Toffuti ice cream (not "Cuties" ice cream sandwiches)
Ian's Alphatots and Supertots, Ian's Chicken Nuggets ("breaded" with something other than wheat flour)
organic frozen fries (bake)
EnerG Wylde pretzels
I.M. Healthy Soy Nut Butter
Ogran products ("bread" crumbs)
Van's gfcf Waffles (comes in plain and blueberry... very, very close to tasting like Eggo Waffles)
Applegate Farms Stadium hotdogs
Barkat products (ice cream cones!)
Amy's Spinach pizza (with the green labels saying gfcf... other pizzas aren't)
many deli meats (read labels)
asian foodmarkets have cellophane noodles made of rice and green beans... great for stir fries
Tamari wheat free soy sauce
there are mozzarella-style soy and rice "cheeses" (I haven't tried any yet)
and there are many gfcf cake, muffin, pies, bread, cookies, etc. mixes to choose from.

You'll come across some gfcf breads in the market (frozen health food section). They are all awful. If you absolutely can not live without bread, get a bread maker and make your own. I personally can't be bothered since Alex was never a bread lover anyway.

There are also plenty of gfcf cookbooks out there. Many, many dishes can be cooked with substitutions and you'll likely never miss the gluten/casein in them. Tinkyada rice pasta with bolognese sauce is totally doable. Summers can be the easiest... lots of grilling! In the top photo Alex is happily scarfing down grilled chicken wings.

While going to birthday parties might be an issue, when your child has his/her own birthday party there's no reason why you can't make your own gfcf ice cream cake (a lot of "cake decorations" while not sugar free are gfcf... just do not over do it and think of this as a once-a-year kind of desert)! I'll put up how I made one for Dana's birthday in a later post. And, yes, it was yummy!

Regression after falling off diet

I am trying to remain positive.

Thus this entry's picture of Alex giving his "bunny backpack" a kiss (it's actually a plush kangaroo, kid's backpack his Dad brought home from one of his trips to Australia) . Very handy for carrying his bottled water and allowed snacks... and adorable as heck.

But, lately anyone looking at a copy of the Diagnostic and Statistical Manual of Mental Disorders and observing Alex's behavior the past couple of days without taking into account his gut dysbiosis would say he's bipolar. One minute he's laughing his head off at nothing (like the car hitting a small bump in the road) and the next second, he's crying and/or angry or vice versa and he can not vocalize why or what he wants. He's a mess. Out of nowhere he'll scream at the top of his lungs. Like today... in the middle of the grocery store. Alex let out an angry shriek that made people around us jump. I told him, "No. Quiet mouth." He settled down, lower lip out and looking like he was on the verge of tears. Then, like someone flipped a switch, he was smiling and giggling. Back and forth.

"Being difficult" doesn't quite describe it. Worse, we've slipped back to yanking even familiar one-syllable words out of him like we're pulling teeth and having to redirect/repeat things to him since he's back to "receiving transmissions from his mother ship."

Besides the sudden Jekyll & Hyde attacks, he has physical symptoms like a severely cracked, bleeding, swollen lower lip. Cracking and bleeding of the skin at the corners of his mouth with pus. Bad breath. I'm loathe to even mention finding tiny pimple-like growths on his back (which has gone away thank goodness). He is on Nizoral and while it's helping it doesn't seem to be enough.

You know what this is?

Candida flare up.

*bleeping bleeping bleeping bleep!!!*

The combination of his system just recovering from being on Augmentin for klebsiella oxytoca then getting (a necessary dose of) glutathione plus having something he's not supposed to (a gut bomb of a pastry made of wheat flour, milk and refined sugar). I am NOT kidding when I say he absolutely can not have this stuff. This is not a "diet" where having "just a little" of something he can't have won't hurt him. I'm thinking of carrying around a picture of the lining of a damaged gastrointestinal tract to show just to show people how bad it is and to take this condition seriously. It's like feeding someone Dave's Insanity Hot Pepper sauce knowing they have a bleeding ulcer in their stomach.

So, back to square one :(. Trying not to think of it that way but it's like we'd lost all the gains we'd made from the work we'd put into this since April. Alex will have to go back on Diflucan on a higher dosage for a full 3 weeks to get this back under control.

Thinking... it could be worse. It could be like when we had little to no idea why he was behaving this way. Subject to fits we couldn't head off or know what to do about them. Thus not be able to go anywhere because of their very unpredictability. Flip a coin... would today be a good day or a bad day for Alex?

At least now I know what's likely to be going wrong, what's worked as treatment and doctors who can give me insight on what we can do next to set things right.

Make a wish...

Because you know what I wish for.

Anyone else catch the Perseid meteor shower last night/early morning?

Got this "one in a million shot" from our porch last night. An "early bird" fireball (as the "show" wasn't supposed to start really 'till around midnight and after). I was actually after a picture of Mars (the reddish "star" around the top right quadrant of the photo) and when I opened the pic on the computer this morning, I went, "What the heck is that?" I cleaned my lap top screen thinking it was dirt but, nope, the little streak was still there (lower left hand quadrant). I caught a meteor! You can miss 'em very easily. Blink and they're gone.

My brother and I stayed up till around 1am. Dana cried "Uncle" and crawled off to bed before midnight. Carl saw two and I didn't see squat. More a "drip" than a "shower" really. I thought I must have missed it. Too much blinking. Was very tired. Past the time this Cinderella's clock starts bonging and her coach turns back into a pumpkin. And then by 1am some clouds started rolling in and what probably would have been a better viewing of this celestial event was further obscured. Show's over. Oh, well. Maybe next year.

To quote Jonathan Hilstrand of the ship "Time Bandit" ("Deadliest Catch" on Discover), "I'd rather be lucky than good any day."

Amen.

Maybe I should go buy a lottery ticket :P.

Alex with the big, doe like, brown eyes is looking at...

a) a kite.
b) trees.
c) a flying potty.
d) a dancing hippo in a pink tutu.

Thursday we went to my doc's office. Due to scheduling mix-up we ended up waiting well over and hour before I could see her. Alex was uncharacteristically patient. Showed actually much more patience than a neurotypical child who showed up about 45 minutes after we got there and was whining and climbing all over his father in less than 10. I think the big fish tank in the waiting room helped. There was a good-sized catfish in it that seemed to find us as fascinating as we found it. (I think the animal sensed something. It went into hiding soon at the other little boy went up to the tank.) It reminded me of our first trip with Alex to the Norwalk Aquarium (pre-flushing-toilet-obsession phase... at least I hope it's only going to be a phase) and the seals would stop swimming to look at Alex as he stood in front of the tank with his hands against the glass. I really want to see what would happen if he got into water with dolphins. There are therapy programs I think out in Key West run for disabled children and adults. Of course, they don't just toss the kids into the water. Like any therapy there's a step-by-step to it and it takes time. But, I would really like to pursue this some day. It was once suggested we take them to Disney World, Sea World, etc. since they all have special accommodations for disabled people. If we're going to shell out the $ for a family vacation somewhere (and one day this will happen, dang it) I think he and Dana would get more out of this than sensory over-stimulation at a big theme park.

Gamma-aminobutyric acid

This is Alex last Halloween (as a green M&M... what his earlier ABA therapists used as a reinforcer because he was addicted to them... and earned us a $4k bill for dental work last year... not really complaining... ABA WORKS) with his paraprofessional that year, Adrienne (speaking of bees...). I love this picture.

Alex had an appointment with his DAN doctor in Wilton today. He seemed spacier than usual the past couple of days and his verbal language seemed to dip back down to barely stringing 2 words together. We suspected it was time he came in for his next dose of glutathione. We'll watch his reaction then decide if its time we moved to just using the transdermal version for maintenance as right now, he's taking it via IV. I brought my brother along to help hold him down in case he freaked. After Alex's first dose of glutathione about 2 months ago, the result was immediate, noticeable and positive. Seeing Alex alert, interactive, "chatty" and stringing words together for weeks after was a hundred times worth the hassle. And further hassle it could very well be as glutathione can temporarily exacerbate yeast/fungal issues in the gut. Knowing this phase will be temporary helps a lot... he can become a real monster. And I'm not talking Elmo. A dose of GABA along with the antifungal helps reduce the length and intensity of the tantruming.

GABA stands for Gamma-aminobutyric acid. It's an inhibitory neurotransmitter. It acts as a "slow down" signal in the brain and plays an important role in early brain development. Scientists have found two autism-related genes directly linked to this neurotramsmitter. A damaged GABA system could flood the brain with sensory information, leading to autistic behaviors. Which makes total sense to me as one of the earliest indicators that something was wrong with Alex was his response to sensory stimuli.

When he was little one summer we were at a barbecue. 'Awfully hot, they turned on the sprinklers for the kids to run around in and cool off. The second the water touched Alex he screamed bloody murder. As a parent, you recognize different types of screaming... the outraged scream, the angry scream, the hurt scream, the scared scream, etc. Alex's made all my alarm bells go off. It was like someone was pulling his finger nails out. He screwed his eyes shut, covered his ears (which was something we came to recognize more and more as common in autistic children) and ran blindly into the sprinkler that was causing the "pain." I took him inside where it was quiet, dark, low key. It still took an hour before he would stop shaking. I remember holding him, feeling like crying and asking out loud over and over again, "What's wrong, sweetie? Please, tell me Mommy what's wrong." There were other indicators that he has what's now known as sensory integration dysfunction. SID is the inability of the brain to correctly process information brought in by the senses. Alex's nervous system was on overload. You notice it when there's way too much going on... too much noise (cacophony versus something structured like music -real music not the crap some people listen to today-), too many people talking at once, too much going on like in a mall, too much visual stimuli. You lose him in the chaos his brain is either at a loss trying to process, can't filter or trying to shut out as a defensive mechanism.

Soon they'll find out why the GABA system isn't working properly in autistic children and why the levels of it are so low in them. And then maybe do something to fix it. Meanwhile, we'll have to supplement what his body has trouble producing.

Back to the doctor's visit...
Alex actually surprised me in that when we got there, he went right for the front door and let himself in and he not only seemed to recognize Dr. Szakacs but he looked right at her, said "Hi." Alex also didn't freak as we sat down in the room where they took his blood for tests and gave him his first shot. Didn't freak when he saw her open the kits and didn't freak when he saw the needle. He was more intensely curious about it all. We got two "squeaks" out of him (when the needle went in and when she had to adjust it to make sure the glutathione was going into a blood vessel) but otherwise found it fascinating to watch his blood. He felt some anxiety, of course, and seemed to regulate his fear (independently!) by counting. After, he quickly babbled something and pointed to the rest of the office. I had no idea what he was saying so I put him down and said, "Show me." And he led me around, looking into rooms one by one. Tour anyone?

At the doctor's office there was another mother with her son. A secretary did a double take because she said the boys looked so much alike. Alex looked over at them, smiled and giggled AND SAID, "Hi." I went over and found out the woman was also from the Philippines (I thought I recognized the accent!) and they hailed from Danbury. We exchanged phone numbers. Was so thrilled to meet another filipina with an autistic child. I mean NOT thrilled that her child was autistic but...

In meeting other parents I've found there are two hurdles. One, being a minority parent there are things about the native culture and mind set that someone from another culture just doesn't get. The second hurdle, usually even more isolating, is being the parent of an autistic child since it comes with a whole different set of challenges and experiences. Looking forward to getting to know them.

This is the victim's rendition of the assailant. Though is it believed the suspect is dead, his accomplices (last seen at Lonetown Marsh) remain at large and should be considered armed and dangerous.

Dana and a few kids at camp got stung several times by bees on Monday. The camp nurse called to give me a head's up. At least I know Dana isn't allergic. By the time I picked her up her skin didn't show any signs she'd even gotten stung.

Man, and she thought she hated bees before...

Uncle Pat's Clam Recipe

Thank you, Uncle Pat, for this recipe. My Dad LOVED it.

2 dozen little neck clams
enough chicken broth to almost cover clams
2 stalks celery, chopped
1/2 vidalia onion, chopped
2 large cloves garlic, chopped
3 jalapenos, sliced into rounds (optional) or 2 tsp crushed red chilies (optional)
1/2 cup white wine
2 tbsp butter

Scrub the clams clean, discard any that are cracked or open. Throw all ingredients into a pot and cook 'till the clams open. Very easy!

The jalapenos I used were from my garden and it's been a relatively wet summer season so there wasn't very much heat in the dish. It did look pretty :). If you want it spicy throw in your choice of hot pepper or the crushed chilies. My Dad also suggested putting some okra in there if you're an okra fan.

Mom & Dad to the rescue

Mom and Dad to the rescue! They came over on Sunday to see the kids and bring over our quarterly fix of Filipino fare since I (hangs head in shame) can't cook dishes from my native country. Well, honestly, I probably could and I have tried but it just doesn't come out right. My mom's mastered pancit (cellophane noodle stir fry) and my attempts pale in comparison.

They treated us to some shopping at the Danbury Mall after. Girls' afternoon out looking at shoes (pink crocheted slippers), bags (hot pink handbag) and, of course, toys (Power Rangers Mystic Force training "costume"). Everything a young lady needs :P.

So, it was a fun Sunday. The kids jumped into the pool and Alex, being mischievous, would splash his grandparents and crack up at Dad's fleeing from the waterside.

Dana being a good girl and helping me wash the car so it's "clean" when Dad gets home. Look how nice and show-room shiny it is! That said, it's probably going to rain tonight or tomorrow. And wouldn't you know it but soon as I went back in the garage to put the bucket and sponges away, I come back to find a bird dropped a load on the hood. Ha ha. Very funny. Not. I guess it could have been worse. It could have been an elephant. Just you watch, bird. Karma's a *bleep*... there's a whole family of red-tailed hawks living in the trees around. You may have just earned yourself a step closer to a beak. Actually her idea of helping when it comes to jobs like this is standing there while Dad or I do the actual work and she... I guess you could say she's the cheer leading squad. "Wow! Great job!" Every little bit helps.

Sometimes I hear Alex getting very frustrated with the computer upstairs. I try to listen to the tone of his frustration and intervene when I know it's just going to push him over the edge. But I wait because more and more of the time, instead of remaining a screaming mess, now he comes downstairs to get help. And I make him say what it is he wants even though I know what it is. Yanking on the nearest adult's arm is no longer an option for someone I know can talk. This time I was under the dining room table picking up some pens I'd dropped. He came into the room, crawled under towards me, sat down and tried to pull me out from under the table.
"Walking."
"Walking where?"
"Come."
"Not until you tell me where we're going and what you want."
He lets out a shriek of protest.
"No. Talk. Tell me."
He yells.
"No. What do you want? Use your words."
He takes a deep breath, lower lip out in a pout and wiping crocodile tears from his eyes,
"Sit down... upstairs computer."
"You need help?"
"Help... yes."
Then I took his hand and we went upstairs. Incomprehensible shrieks are not a communications option.

As for You Tube...
My brother Carl said, "You know, I can understand why Alex would go through and watch 1,800 or so videos on You Tube on flushing toilets. What makes it really insane is that there are hundreds of people out there, all over the world, who spent a not-small amount of time with a cam corder pointed at toilets just to film them being flushed, flushing different items, length of time on a flush, the weakness and strength of a flush, flushing toilets from different countries, northern and southern hemispheres..."

Absolutely mind boggling.

It's summer! Dana's sunflowers are in bloom, the kids smell like sunscreen... and Mommy got bit by a tick and is now on Doxycycline for Lyme Disease. My doctor said, "Welcome to Fairfield, CT." Since this is a family show I'm not going to repeat my reply.

Fairly certain it didn't come from my cat... because Nicky's been missing for over two weeks :(. We've had no luck finding him. Chris saw a big coyote (said it was the size of a small German Shepherd) drinking from our little koi pond I think a week before. And we definitely hear them howling at night. And the neighbors say they've spotted them in the area as well. Someone said something about a mountain lion in the deeper parts of the town. I don't think I'll be visiting Huntington State Park any time in the future. So, not feeling hopeful about finding Nicky alive.
Alex doesn't seem to have noticed his disappearance yet. Dana (always looking on the bright side) is asking if she could get a kitten now. She does miss him. She looks at the kitchen door every time she goes into the kitchen to see if maybe he's back, meowing at the door to be let in.

'Missing Nicky very much. He was a great cat.

"Old Dog"

Disney has invaded CT. They were filming a movie called "Old Dog" (John Travolta, Robin Williams, Kelly Preston, Seth Green, Matt Dillon to name a few of the actors) and the actors' trailers took over the parking lot so the parents had to drop the kids off at the circle. Alex's teacher Krystel said Robin Williams took some time to come by and see the camp kids (isn't he great?) and have some photos taken with them.

One of Redding's finest in my parking space there. They must have had fun... very little happens in this sleepy but affluent, one-horse town.

Amy's Spinach Pizza

"Yes, Virginia, there is a Santa Claus."

I'd heard about this product from the gfcf lists I belong to but had never seen it anywhere. Today, I found stock had arrived at one of the local health food stores we frequent. Gluten free/casein free pizza. You're kidding, right?

First, frozen pizza is awful. We'd tried every single brand of "regular" pizza I could find in the frozen food aisles of various grocery stores before the kids went on the diet.

Second, there's SPINACH in this. Lots of it and very little of that camouflaged under cheese.

Third, it's rice-based crust and soy "mozzarella
and ricotta type" cheese. The soy and rice cheeses I'd tried I could barely choke down the first bite. I was also warned that the cheese would not melt like in the picture. And I hadn't yet found a gluten free bread that didn't have the texture of cardboard.

I thought there's no way in heck my kids will eat this. But a number of the moms on the lists said theirs liked it. So, what the hey...

I tried hiding the box but Dana found it. "Mom, that's not a vegetable is it?"
"Spinach... you know like what Popeye eats to make him stronger."
"I don't like spinach."
"You're going to try it!"
"But, Mom..."
"NO BUTS."

Once the aroma wafted through the house, Alex came running down the stairs. "Pizza. Pizza!" I cut up a few pieces not expecting him to eat it. But it passed his is-this-safe-?-smell-test and he took a bite. And he smiled. And he jumped up and down. And he happily took his plate of cut up pieces and a bottle of water upstairs to munch on while he played on the computer.

While Dana was distracted playing Bionicle on her XBox360, I snuck a piece in her mouth before she could see "green stuff." I walked out, waiting to hear "I don't like it." But, nope. Her next words were, "Can I have two slices?"

Don't get me wrong. For someone addicted to NY style pizza, putting this on a table next to "the real thing" would be sacrilege. The crust does not have the texture of wheat flour bread. The cheese does not melt well. But, as my brother agreed, it is tasty. Somewhere between the spinach and sauce there's a touch of pesto that's very nice.

Just don't think of it as "pizza."
Think of it as some kind of "healthy Italian-style treat."

Note: Only Amy's very clearly marked in green "Gluten free, Non dairy" Spinach Pizza, Rice Crust product is gfcf.

Update on treatment plan & a bit on Glutathione

'Quiet couple of days. Once took the kids and Carl out to lunch at the Penny 2 Diner in Fairfield. I'd forgotten that though their fries are unseasoned and cooked in vegetable oil... it's the same oil they use to cook breaded things. Oops. By evening, Alex was a mess. I am, however, pleased to report that earlier when I took him to a Duane Reade to get a drink, when I opened the refrigerated case he looked at all the sodas... and reached for the bottled water. Yayyeee!!!

But, he's become a little more "spacey" lately and not stringing more than 2 words together. Consulted with his doctor and 'think it's just that he's plateaued on his Diflucan and we need to switch him to Nizoral. Diflucan treats a number of types of fungal bugs and Nizoral another group. He's done with Augmentin for the klebsiella so we'll only need to maintain healthy levels of good bacteria with things more gentle on the body.

Since he responded so well to his first shot of glutathione, he's scheduled for another dose. Eventually we'd switch to the transdermal form for maintenance. Glutathione is a protein in the body responsible for DNA synthesis and repair, amino acid transport, detoxification of the body from toxins and carcinogens, protects cell from oxidative stress, and lymphocytes (cells vital for effective immune function) depend on it for proper function and regulation. It has antiviral properties that slow or stop the replication of many pathogens. It is a protein that protects every cell, tissue and organ in your body from toxins and disease. And finally, it directly affects your body's ability to reduce and control chronic inflammation (which we know Alex has through testing).

I'm not making this up. These are from real articles from medical journals on biochemistry, epidemiology, pharmacology, immunology, etc.

There was a Discovery article on this in an issue this past year... how scientists DO find inflammation in the brains of autistic children. But they've also found inflammation in their digestive tracts. Additional damage to the digestive tract is caused by the abnormal overgrowth of pathogenic bacteria and fungus. They've found damage/changes to these people's DNA. And many children undergo chelation because they have abnormally high levels of toxins in their bodies. When autistic children get sick, they can get very sick. Fevers shooting to alarming numbers.

Surprise! Children on the spectrum have much lower levels of glutathione in their bodies than healthy people.

Anyone see a connection here? Maybe?

Why their bodies are producing less is still up in the air. But it works. Via clinical trials. (insert scoffing from various medical professionals here).

Yes, it doesn't have 20 years of testing, but neither do drugs like Lamictal which is prescribed every day to hundreds of patients with bipolar manic depression. And my psych admitted, "We have NO IDEA how many of these drugs work in the body. We just know they do." Guess what's another way of saying that: "We know it works through clinical trials."

Why would drugs like Lamictal get more backing and acceptance than supplementation? Why do doctors find it easier to prescribe an antiepileptic when they don't even know how it works in a person with manic depression and nevermind the side effects. There are practically no side effects to glutathione and other supplements that autism specialists use to treat our kids.
"Medical professionals" on the other side of the battlefield would rather put an autistic child on anti-psychotics that are proven to do serious brain damage than explore ways to actually find out what's gone wrong and try repairing the damage that's already been done.

Why?
Because you can't put a patent on something like glutathione?
Don't even get me started on the pharmaceutical industry and their lobbyists.