"Puppy."

Who needs the zoo when I can view local wildlife in the comfort of my own home? Found this doe scarfing down a few of the plants (I'm not sure I want to see what she did to the rose bushes) by the front door. She's not more than 8 feet away. Dana stood and watched her for the entire time she was out there. I asked Alex, "What that?" He said, "Puppy."

Which kind of makes sense. Some friends of ours adopted a greyhound from a greyhound rescue group. And the physique actually looks similar. Especially if you see that there are greyhounds of that color (fawn? red?).

I've been face to face with a buck in the same area. Yep, they're getting pretty bold. Just in case you don't know... don't stomp your foot at a buck. In deer-speak it means, "This is my territory." And unless you're ready to go head to head with a male...

Uppity woodpeckers

Our little feathered friend here is a regular. He's become so comfortable around us that Chris will be at the grill and the kids will be in the pool, all within arm's reach, and this bird will remain pecking away at the suet cake.

One morning, after dropping the kids off at camp, I came back and the feeder was empty. The woodpecker was on the branch it was hanging from and he started chirping away at me. I walked over, he hopped to the next branch up, and waited while I took the feeder inside to refill it. Soon as I put it up and stepped back, the bird hopped back on to the feeder.

"Il y aura-t-il n'importe quoi d'autre, Monsieur Pic Pelucheux? No? Bon appétit!"

Her first ring...

Wednesday, the camp kids (except Alex... bringing him to a museum is a disaster waiting to happen) went to a museum on Native American studies in Washington, CT. I had given Dana a little $ for the gift shop. Another little boy in her group didn't have money to buy anything so she shared hers with him. She couldn't decide what to get so he picked out a ring for her to wear. Isn't that sweet? Her first ring from a boy. Ok, so it was her money but...

Dana's a sweetheart. Her OT at school said she was one of the most nurturing children she'd ever met. And when they did "interviews" in her 2nd grade class and she was asked what was the most important thing about Dana, she said, "I help my brother learn how to talk." Alex couldn't have asked for a better big sister.

Splish splash...

It's not the size, it's what you do with it.

I'm talking about our pool.

It's not huge but fill it with a few kids (and two moms taking turns barking, "No jumping!") and you've got yourself a party.

My friend Gladys and her kids, Elena, Adam and Alexis came over for the afternoon. Beautiful day out and the water was at a comfortable 85 F. After some chow (and chasing each other around the house), Alex led the way (first requesting, "Potty... poopie... pool.") and Dana yelled, "Hey, everybody, let's go in the pool!"

I was reminded (fondly) of those National Geographic specials on wild African wildebeest as they stampeded off an embankment and crashed into a river. They had a great time. I can't imagine summer without a pool now.

I picked up my brother Carl at the train station in the morning. He's here to help me with the kids while Chris is away on a business trip. Alex remembered him with no problem. And was especially happy to watch over Carl's shoulder as he played Forza Motorsport on the XBOX360... specifically the track in Germany with lots of TREES along it. But, of course! Alex doesn't like it when Dana or I play... we keep skidding off the track.

Day Camp

Matt, Laurie and Virginia. 3 of the Day Camp counselors. The town's recreational center uses teenagers from the local high schools and they're an awesome bunch. They really connect with the kids. There's a very good ratio of 3 counselors for each group of about 10 to 12 kids.

Dana's having a lot of fun at camp. I come into the gym to pick her up and I'll either find her running around like a maniac (with all the other little maniacs... I wonder that more munchkin collisions don't happen in there) or slumped, exhausted, on her backpack. Her favorite special is Arts & Crafts. And her favorite camp counselor is someone named Dan. Dana has the perplexing habit of gravitating to the boys. She doesn't yet understand that she's putting them in grave peril.

But, YAYEE! Teenagers! (How often do you hear that coming from a parent?) They have the energy for managing all those hyper, high-on-sugar little darlings. And they're fast. They need to be fast around Alex who is (be nice, Mommy) a natural sprinter. And with that lower center of gravity, he can turn on a dime. 'Doesn't have the focus and discipline yet to do distance running and for that I am grateful. At one point last summer he got away and had 4 teens chasing him down. I can see Alex doing track... and he'll do great... providing there's a toilet at the finish line (and no one is using it at that moment). Why can't he be obsessed with clocks? Or calendars? Or phone books?

Pool Rat

Quiet weekend at home. Quiet is good. I love quiet. We've had enough excitement to last us a lifetime. Saturday morning, Alex came up to me with his socks and shoes, put them on and said, "School. I want school. Krystel (sounds like 'Crisco' when he says it)." Then proceeded to put on his backpack.

Crap.

Did his teachers do days of the week with him? Did he understand what that was about?

He threw a little of a hissy fit when I tried to explain to him there's no school (camp) on Saturday. I guess he did.

I figured, "Heck, since he's already screaming..." and we cornered him in the bathroom to give his hair a trim. Havoc ensues. We've really got to find an easier way of doing this. But after, itching from the bits of hair everywhere (and I mean everywhere), he asked, "Bath time. Wash hair." And jumped into the tub. Thus refreshed, he proceeded to snack on a banana forgetting all about camp.

My cousin Frances from NJ called to do some catching up. I can't believe my goddaughter is 11 now. Alex tugged at my shirt, "Pool. I want pool." "Ok, Alex, you can go get ready." He went to the closet and got a swim pull up, changed in the bedroom and waited by the kitchen door, smiling back at me. I asked, "Do you want Dana in the pool?" "No, please." LOL! I guess he didn't feel like being splashed, have to battle for the river rat inner tube or having his feet grabbed underwater. From the living room, Dana yells, "I don't want to go in the pool today!!!" It's unanimous.

Going right to left: Dana, Alex and Krystel. Krystel is Alex's current paraprofessional/ABA teacher from IPP (Institute of Professional Practice) for his summer camp/extended year services. She's great and very sweet. And one in a line of teachers and professionals to whom I will be forever in debt. While one would never wish to end up having to navigate the often frustrating maze of special education because of having a child with a disability, I am absolutely floored at the caliber of people we have met along this journey. They just don't get the recognition they deserve. This is a difficult population to work with. They put up with a lot... kicking, screaming, biting, hitting... and that's just the parents. Kidding :). But to work with these kids takes an incredible amount of patience. They have a lot of trouble retaining information one day to the next so you have to repeat lessons over and over again and those are the breakdowns of the simplest skills we take for granted. They juggle crazy schedules, they don't get paid overtime and the pay is nowhere near where it should be. They have to negotiate stressful interactions with parents and administrators. Believe me, there is a high burn out rate in this teaching group. But you'll be hard pressed to find more dedicated educators, who genuinely love working with children, who see hope in the the faces of kids whom others would deem hopeless and take genuine joy at these children's successes... every little step forward. Because, knowing first hand how much effort goes into them, they know there's nothing "little" about those steps.

Quinoa Tabouleh

There's a great health food store in Fairfield called Mrs. Green's. Nice selection of gluten/casein/corn free products. A trip there isn't complete though without grabbing a take-out of my new favorite "earthy crunchy healthy" dish. It's not rabbit food. This stuff is too yummy for rabbits. Thanks to the Mrs. Green's website (www.mrsgreens.com) I can now make this in the comfort of my own home. They've got a great collection of recipes. The fun part is I get to try a lot of them via the store's salad bar first. Then if I absolutely can not live without it I pull up the recipe and whaalaa. This is a very light side dish/snack. If you're looking to try something for a bbq other than the usual coleslaw, macaroni salad and potato salad then give it a shot. It's very easy to whip together (do allow for it to sit overnight or a few hours at the very least in the fridge for the flavors to blend). One thing... the use of fresh herbs is mandatory for this dish (Container herb gardening, anyone? If not, you should!). So, let it be the showcase for those little green things in your garden.

1 cup Quinoa (I got mine from Trader Joe's but any health food store should carry it)
1 1/2 cups water
1 tsp chicken or vegetable bullion
3 tbsp lemon juice
1 tbsp olive oil
1/3 cup scallions, finely sliced
2 medium plum tomatoes, seeded and diced
2 tbsp fresh mint, chopped fine
2/3 cup fresh parsley, chopped fine

Rinse Quinoa (pronounced keen-WAH) in a fine mesh sieve. Bring water and bullion to boil in a medium sauce pan. Stir in quinoa. Cover, reduce heat and simmer 15-20 minutes or until all the liquid is absorbed. Fluff with fork and allow to cool completely.

Combine remaining ingredients, tossing to blend. Cover, chill several hours or overnight.

Meow

Dana adores Nicky. He's actually very chatty for a cat who isn't a Siamese or a Mau. And he will tolerate such indignities as being dressed up by her with perfect aplomb. It's true... stray cats are very grateful when they've adopted a new home. I think I'm actually allergic but Nicky's 14 yrs old (estimated by a vet) with a hypothyroid. And after the way we found him (with a hole in the middle of his head, looking like someone had shot at him with an air rifle, covered with ticks, scrawny and scruffy) ... he's staying.
I'd like to write how Alex and Nicky have formed a bond that affirms all those things people say about special needs children and animals. But maybe it's just a cat-thing... they accept people on their terms. But it has taught Alex something about caring for another creature. I've seen him put cat food in Nicky's bowl when it's empty or he'll give (ok... more like toss from a safe distance) Nicky some cat treats. When we go grocery shopping, Alex has been very good about not grabbing things off the shelves. He will for cat food. I ask him, "What are you doing, Boo?" And he'll look at me and say "Nicky" as he continues to put one can after another in the cart. There was one winter when we stayed overnight in Mystic and it was snowing. Alex watched the snow come down, went to put on his coat, took my hand and said "Nicky" with his tone and eyes showing genuine concern. When we got back and the cat sat in the kitchen, he went over and gently pet Nicky's head. It took him a year to get to that point but he got there. Curiously both have the bathroom obsession. Sometimes when I'm in there I'll hear a bump against the door. If I call out "Nicky?" and I hear an answering meow then I know it's the cat (Nicky will respond to his name and usually come if you call him). If there's no sound then I know it's Alex. I've opened the door to find them both on the floor, on either side of the door frame. Some day one of them will tell me what the deal is. I'm hoping it'll be Alex and not the cat.

The wheels on the car go round and round...

Rides in the car with the kids are usually packed with little surprises. For example: when Alex throws a temper tantrum, he will often unbuckle his seat belt so I'd have to pull over and buckle him back in. Dana usually sounds an alarm when she sees him move his hand towards the latch ("MOOOMMMYYYYY!!! Alex is trying to unbuckle his seat belt again!!!" or "ALEX, NO SEAT BELT!!!). We got a car seat that has a 5 point harness that can go up to some 65 lbs. Unfortunately, he's already learned how to undo the top part. I can now either duct tape him to the seat or consider getting this one which goes up to 105 pounds and comes with a buckle guard at a jaw-dropping $800... http://www.elitecarseats.com/
Columbia-Medical-Orthopedic-Positioning-Seat.pro#specs

One of the other reasons he will tantrum in the car is music. I have a selection of some 15 cds in the car, the majority being lots of different artists mishmashed together. One cd having over a hundred mp3s on it. Alex has memorized the tracks on all of them. He'll either ask for two or three random seeming track numbers or look at the number of the current song playing and from that know which cd it is and which songs he likes on it. I've had some of these since before he was born and I don't know what song is on which cd. The conflict usually happens when Dana wants to listen to one track and Alex another. If it doesn't get resolved then I end up doing one of two things... turn off the bloody thing or put on the soundtrack to Romy & Michelle's Highschool Reunion. I don't know why that works but it does. That probably says something about 80's music though I couldn't even begin to fathom what. The last time I did, Dana sighed, "Mom... can you put on some real music now?" "Not until you two knock it off."

Good night...

"Polka dot bunny." Often doesn't sound much like that when he says it but we're working on that.

Last night, after his bath, I usually carry him (yes, he's getting way too heavy for this) to the bottom of the steps and we walk the rest of the way up. This time I broke routine and put him down, "Go say good night to Daddy first." He walks right up to Chris on the computer a room away and tells him, "Good night, Daddy." Hugs and we walk upstairs. Coming into their room, Alex sees some toys scattered on the floor. On his own he says "Clean up" and puts away pieces that go with their play kitchen and stray Tinkertoys into the Tinkertoy bin. The pile of nesting boxes, books and stuffed animals on his bed make him pause though. "Ok, I'll help you. You fix the boxes and I'll put away the books." And he does... putting 2 into 3, 3 into 4, 4 into 5, etc. He hands me the sorted boxes to put up on the shelf, jumps into bed, smushes his face against polka dot bunny's and smiles as he curls up to go to sleep.

Alex on biomed treatment...

March 5 earlier this year we flew back from a conference on Autism in Vancouver. I felt it was absolutely necessary we went come hell or high water. We felt Alex's progress had stagnated.
March 6 we went on the gfcf diet, cold turkey and launched an assault on the yeast/fungus we suspected was in his digestive system. It wasn't just on a whim... the speakers (other parents and doctors) had described symptoms they had seen in their children on the spectrum. Alex had 9 out of 10 (10 being a capsule endoscopy) of the symptoms. Cut off from the opiate effects of gluten and casein (ever wonder why they call it "comfort food"?), he underwent a (thankfully) temporary regression. He went bananas. His ABA charts at school were all over the place. He nearly attacked his teacher. I got a panicked call from his IPP case manager.

By the end of the week though, he had calmed significantly, focused more easily and one day the week after, I came to get the kids from school. Dana, Alex and Alex's para Sev were waiting for me as usual in the big, very crowded gym. Alex spotted me first. He touched Sev's arm and said to her, "I see Mommy." I think I startled people when I screamed. He's continued to improve since then.

We haven't seen a monster tantrum since. He did become very agitated/spacey/aggressive/coming out of his skin one day when we were away... which was right after he got a hold of a glass of soy milk that had regular milk mixed in. It's obvious when he's had something he's not supposed to. Some people think it's torture to not let them have products like bread and cow's milk. It's 10 times worse seeing it completely scramble their system, watch as they go nuts, flitting from one thing to another but frustrated with everything like a really bad manic episode. Or that it doesn't seem necessary to take corn out of their diet, make sure he gets enough fiber or chase him around with bottled water because he can't remember to keep himself hydrated. Yeah... like it's better to sit there and watch him cry in absolute pain because he needed a suppository because he didn't do a #2 in a week. We do this because his digestive system's health is compromised. It's damaged. Why is it so hard for people to understand that he is a sick child? A test we had done on him showed the markers for inflammation and yeast and an overgrowth of a pathogenic bacteria... things that have been published in mainstream periodicals like Scientific American and Discovery. Why that happens in a lot of autistic children is still something they're trying to figure out. But they have figured out it does happen and it does have an impact on behavior, learning, brain development.

There are various things that can make the yeast come back. Sugar. Infractions (labels are not always very thorough about what ingredients are in the product). Certain supplements. So it's a constant battle to keep the fungus back.

3 days into Diflucan, he woke and stopped to look at me as I went around the kitchen and I said, "Good morning, Alex." Without missing a beat, he replied, "Good morning, Mommy." "I'm making eggs. Do you want onions in your eggs?" He looks at the onion on the counter and looks back at me, "Onions... yes." Towards lunch he brings me his favorite gf muffin mix and helps me make it. Alex fetches the eggs, the soy milk, the protein powder packet, the vegetable oil and he puts everything back in its place. He helps by stirring the bowl and putting the paper baking cups in the muffin pan. He usually doesn't like to wait for anything so he used to keep trying to check the muffins by opening the oven door a crack. "Stop, Alex. It's hot. It's not ready yet. You have to wait."

So, he pulled up one of his little kid chairs, planted it a few feet in front of the oven door and sat down to watch the timer. A few minutes later I passed him and Alex, elbows resting on his knees, chin on his hands, looks at me and says very matter-of-factly, "Waiting."

Yes, we are, sweetie.

Grilled Chicken Oregano & Herb Butters...

This is one of those recipes that makes the (relatively minimal) effort of growing fresh herbs worthwhile.

1/3 cup olive oil
3 tbsp lemon juice
3 garlic cloves, finely chopped
2 tbsp chopped fresh oregano
1 tbsp chopped fresh tarragon
2 tbsp chopped fresh parsley
1 tbsp chopped fresh thyme
1 tsp salt
ground pepper to taste
4 boneless, skinless chicken breasts

Whisk the liquids and herbs together. Pour over chicken breasts and let sit 30+ minutes. Grill. You can use just about any combination of herbs available or just one or two. Sage, chives, marjoram, rosemary, lemon thyme, pineapple sage...

And another use for those yummy herbs that can last you for several months: mix your favorites with a little lemon zest and work into soft butter. Make into logs (for easier cutting later) rolled in parchment and freeze. Great on bread, crackers (if you're not wheat-free :)), smothered on corn on the cob or, when the weather starts to cool, slices tucked under the skin of a whole turkey or chicken before roasting. The kids love this. We use Earth Balance Natural Buttery Sticks (gfcf).

We're here for the frikkin herbs, dang it...

Grandma Cathy got me started on gardening this past Spring. We tried to get Dana into it but she does not like to get dirt on her fingers. She did help Grandma plant little onion bulbs: Grandma poked holes into the ground and Dana dropped the bulb into it, very daintily using only thumb and forefinger. After the 3rd onion bulb, she announces, "I'm getting the hang of this gardening thing!" She watches us dig around in the dirt, she waters her bean plant... that's about the extent of her gardening activities. Actually, that's not fair... she did help me get salvia into the ground by a big Rose of Sharon tree in the yard. And she did a whole flat, too. She wore latex-free disposable gloves.

So, we're regulars at Agway. Alex likes being there but he gets antsy when I browse. My tarragon plant didn't do so well so I hoped to find another at Agway and just grow it in a container since I seem to have better luck at that. I love tarragon in a recipe Grandma Cathy discovered in _The Soprano's Cookbook_ for Grilled Chicken Oregano (recipe to follow).

I had Alex in the cart and we go down this long aisle, me talking all the while, "Mommy's just going to find some herbs, Boo Boo. Mommy needs a new herb plant. Then we'll go. One herb plant... maybe some potting soil... and a container..." I was looking at the flats of impatiens to my right. Alex looks around, grabs my chin and turns it to my left... where all the herbs are. He impatiently takes my hand and moves it to the nearest quart container of thyme. Mommy's jaw drops. "Oh! Good job, Alex! That's the wrong one though... let's look over here."

Btw, they didn't have any more tarragon. But they had a nice selection of pepper plants on sale. I picked up a tall jalapeno and asked, "What do you think, Alex?" He scanned the table, reached for the hot pepper plant above and put it on his lap... a nice specimen of Pretty in Purple.

"All about me" by Dana

I am 9 years old and my favorite color is blue. My favorite sport is kickball. I like drawing because its fun and cool. I also like to go in my pool.I play video games on my xbox 360. I eat apples, hot dogs, noddles, oranges,and bacon. I like my cat named Nicky because he is very furry and warm. He always meows for food because he is hungry. I also like flowers and planting them. They smell very pretty like my favorite flowers roses. My favorite bug is a butterfly but I hate bees because bees sting you when you hit the bee and the sting hurts a lot.

Dana and Alex in the pool

The water's at 85F. Warm enough I might actually have a go at it. It's going to thunderstorm starting tonight and into the first half of the week, I think, so the kids better get their pool-fix in today. Alex looks grumpy because I pulled him away from the computer. I knew I wasn't going to get him to smile at the camera but counting my blessings he's even looking at it. I did not tell them to pose like this was going to be the poster shot for a new prime time television drama.

Tuna Apple Salad

Had this for lunch... my favorite tuna salad recipe. This makes enough for about 4 people. Very simple. Very fast. Now a summer menu staple. Mix very well...

5 cans tuna packed in water (reserve liquid for deliriously happy cat)
2 apples of your choice, seeded and chopped with skin on
(I just use what's on hand... usually Macintosh since Dana likes them)
1/4 cup diced Vidalia onion
2 celery stalks, chopped
1 tbsp apple cider vinegar
2 tbsp mayonnaise (we use Smart Balance)

I've created a monster...

It was only a matter of time before Alex would discover the wonders of "Google." He's watched me search for images on the computer and it wasn't long before he asked to see "potty." You wouldn't believe how many images you can pull up when you type "flush toilet." This is, of course, one of his autistic obsessions (I'm hoping it means he has a future at least as a plumber... hey, they make decent money). And on You Tube he finds this video of a cat obsessively flushing someone's toilet. Going on 2 hours now... I'm despairing I won't be able to get him off the computer. I called him earlier: "Alex, want to go in the pool?" Alex: (shriek) "NO!!!" *deep breath* Silver lining, Mommy. Look for the silver lining. Ah, yes. It was an appropriate verbal response.

Cookout!

Spent Saturday afternoon with our next door neighbors. They're the best! You hear about kids being best friends with the kid next door but it actually (I think) rarely ever happens. We lucked out... Dana and Emily are. They're wonderful neighbors. And very understanding and accommodating about Alex's quirky special needs (like the necessity of keeping him out of the bathroom else he'll stim on flushing the toilet over and over again... something that keeps us from taking Alex over to anyone else's house other than his grandparents' who have "Alex proofed" their bathrooms). And preparing food he can have because he's on the gfcf diet. Being on the diet's hard on a kid during the summer with all its barbecues and gatherings. It sounds... odd... overprotective... unnecessary... but you haven't seen him when he has an "infraction." Alex turns into a complete, out of control mess. I'll write more later about the diet and how its been HUGE in helping him (along with hundreds of other autistic people) in another post. Anyway, we had a great time. Laurie and Steve are awesome. Steve was hilarious playing with the kids in the water. Summer just isn't summer without the sound of water splashing, kids laughing and screaming.

The Turning Point

Or at least I hope so. Throw salt over left shoulder. Knock on wood. Rub rabbit's foot. Cross fingers.

Alex is 7. He was diagnosed at 3 with "autism disorder, mental retardation unspecified." Seeing those words on paper put us on a raft in the middle of the ocean in the dead of night. But let me tell you what happened in the weeks/months just prior: hubby lost job, no stable income, had to sell home and move, hubby's heart assaulted by strep bacteria that eats away at his mitral valve and nearly kills him, weeks of hospitalization, hey, hey, he's walking, ok, pack up, you need to move again... and btw, your son has a mysterious neurological disorder we have no cure for. Get at least 20 hours ABA ("What's ABA? Oh, just go to your school district." School district: "F-off."). Thanks for your time. Bye. Good luck.

But despite my gripping I would have to say, thus far, luck has been kind (finally, anyway). Somehow I think we've found the right people at the right time come into his life... each one giving that one push to get him to that next step. And Alex, now undergoing biomedical treatment alongside his behavioral therapy, is making steady progress. The cause of autism is still up in the air. Though I think its less mystery and more who/what is responsible = who gets sued billions of dollars. That's for another entry. Anyway, people can say what they want but the proof is what I, as one of the people in the front lines, see every day. I see a little boy who plays with his sister instead of shoving her away. I see a little boy who searches out opportunities to interact with his loved ones instead of shutting himself off. I see a little boy who looks at what I have to show him, says "frog" and laughs when it startles him by jumping out of my hands. A little boy who will run and wrap his arms around my waist and smile up at me. This is more than I had dared hope for when we got his diagnosis. When it took 3 months of intensive 1:1 just to get him to LOOK at you when you said, "Alex, look at me."

You, reader, may have no idea how far he's come. That's OK. All you have to know is how absolutely proud my kids make me every day.