Note to Self: Research Requirements for Creating a 503c Not-for-Profit...

For those who empathized over Phil the Tiger Shark's mysterious disappearance--you may be happy to discover that he is once again a part of our merry household...a cleaner Phil, a Phil that arrived in a box in the mail...from Ohio...with a packing slip and bubble wrap...

My point is: Phil is among us, again. Though mum's the word on whatever happened in Nashville...what happens to tiger sharks apparently stays with tiger sharks. Or sumthin...

Around the same time as this most-felicitous reappearance, we were over at the home of a particularly crafty friend who had MADE HER OWN LEMONADE STAND OUT OF A BROKEN PICNIC TABLE. She lives on the perfect street for such a commercial endeavor and an hour later, at one thin quarter per cup, the boys were collectively $14 dollars in the green.

Now, Ben had already decided that his share of the libation-booty would be donated to The Riverhead Foundation for Marine Research and Preservation. (This after we discussed the importance of GRASS ROOTS FUNDRAISING and where best an eleven year old boy might make a difference to creatures of the sea.) What was interesting, though, was how many of the other boys ultimately agreed to donate to Ben's pet project as well...social skills be damned! You have to respect the passion and knowledge my son brings to the table when he is interested in something (ten years later, I am beginning to see the positive side to all of that passionate emotion and energy that toddler of mine possessed!). All the children involved had seen Ben running down Maple Avenue behind every car that passed, shouting:

"Do you care about the health of our oceans?!? Do you want your grandchildren to be able to see dolphins someday or are you willing to see dolphins GO THE WAY OF THE DODO?!? Do you UNDERSTAND THAT YOUR HEALTH IS CONNECTED TO THE HEALTH OF OUR OCEANS??????? THEN DON'T BE A DODO!!! BUY SOME LEMONADE!!!"

You could see it on the faces of his business partners: THAT is a kind of lunacy that I cannot duplicate, but can RESPECT!

The only financial holdout was James, his own brother, who wanted to put his $2 towards a launching Poke-ball.

"Dodo! Dodo! Dodo!" Ben hissed periodically for the rest of the evening...


Cue: our dinner table, a couple of evenings later.

"I want to make more money for the Riverhead Foundation," my son told me excitedly. "After dinner, can we build our own lemonade stand?"

"Exhausting as that sounds," I answered brightly, "no!"

(If it weren't so irritating, I would be daily touched by my children's near bottomless well of belief in my many abilities...)

But then the wheels started turning. "What about this?" I asked. "You've been working on creating a storybook of your pictures of Phil and Hamtoro. What if we had ten turned into books through iPhoto (the little books are only about $5 apiece) and we try to SELL THEM as a fundraiser? And then, we could send the profits from your books to The Riverhead Foundation (which would require some math)! AND! We could count this as part of your school requirements for art, science and technology!"

I will do just about ANYTHING to avoid manual labor...

Shark Week is Coming!

Discovery Channel's Shark week happens at the end of this month! July 29 through August 4, people!!! The boys and I had an absolute blast tonight playing with a Shark Video Mixer on the station's website--it's very similar in design to iMovie: you just drag and drop images, clips, sound effects, transitions and music onto a time-line...and then click "play" to enjoy the fruits of your labors!

It's a great exercise in sequencing events as well as a science lesson AND a creative lark.

Oh, c'mon! When was the last time YOU went on a creative lark???

So I Guess Mammoth Burgers Aren't An Option, Either?

I'm NOT having soup for lunch today! It is like the Permian mass-extinction out there, it's so hot!

--Quote and picture by Ben

If you could go back in time, who would you visit?

It amazes me sometimes what I find myself YELLING OUT LOUD...today? I actually yelled out the phrase

How many times do I have to repeat myself? "Rock, paper, scissors" is a verbal contract! Once you play it, you HAVE to stand by the result! Otherwise you have just LIED!!!

Absolutely yelled it. Had a sore throat afterwards. Families all over the neighborhood can now understand, define and put in a sentence the words SOCIAL CONTRACT!!!!

I am NOT the patient mother that I envisioned pre-parent-hood--some fabulous combination of Maria VonTrapp and Annie Sullivan with just a dash of Mother Theresa thrown in. This seemed a reasonable possibility in my 20's: all I had to do was learn how to play classical guitar and, maybe, take a vow of poverty. Regarding the latter...hey, I was well on my way!

There were times when Ben was little where I would just close him in his room, lock myself in the bathroom and SCREAM! I figured that the screaming was better than hurting him--I was capable of that much rational thought. These were the days when I was ON all of the time, those first three years. When...

• his sleep schedule was to fall asleep at midnight, up at 8, with a a 2-hour nap from 4-6 pm--on good days;
• if he got sick (often in the toddler years), he'd cut his sleep IN HALF;
  
• he was phobic of blood, darkness, shoe stores, hair cuts, doctor's offices, large spaces, small spaces, loud noises, nail clippers, baths, crowds, bowel movements [um, his], stomach viruses (which he seemed prone to, and which always resulted in me ultimately walking stiffly away to shower out a hair and chest-full of vomitus)... and being alone--like, for instance, when his mother was taking a shower;
• phobias were expressed through terrified, hysterical crying--for hours, often taking the place of sleep periods;
  
• he was hyperactive and accident-prone (I mentioned the blood phobia, right?)
• he narrowed his diet to grapes, peanut butter crackers, cereal bars, milk, apple juice, hamburger and ice cream for an entire year--FYI: seedless grapes in February will run you $7.99/pound;
• his father was in the Navy--crummy health insurance, low pay AND a complete lack of family values? YES, PLEASE!!!
• his father was also going to graduate school full-time...
• oh, OH! AAaaaaaaaaand: I'd given birth in a military hospital 3,000 miles from anyone that I knew and then moved across the country to another town (albeit, a pleasant one) where I had no friends.

So, sometimes? I went in the bathroom and screamed. Scrunched up my eyes, put my head between my legs and bellowed. Probably akin to the sounds I made during childbirth--definitely the same position. To this day, I do not know what the neighbor on the other side of the wall might have thought of this behavior. God willing, she was at work and not sitting in her kitchen, checking her calendar and muttering, "yup: day 22 of the cycle. Again."

I was pretty sure, however, that this type of behavior would not qualify as the requisite miracle the Vatican seeks out in all its petitions for sainthood...

After my personal pity parties, though, I would go back to my little boy, who would no doubt be hysterical in my absence, standing at the gate I had in his bedroom door, looking like the littlest, most unhappy inmate at Alcatraz: face red and wet, body hot from crying, nose running copiously, arms outstretched and jittering for me to hold him.

And I would take him and hold him. And sometimes we'd both cry some more. The reasons I was able to keep any sanity at that point were pretty simple: he was mine. I loved him. He was made more miserable by his senses, his whacky sleep schedule, the way the world crashed in on him, than I was. He loved me. He needed me...

What I realize now, in retrospect, is that I created my own "therapy" for him, on the fly, out of a need to survive. We read together because it was something that we both found soothing. For hours, most days. Bedtime began at ten in the evening and didn't end until midnight. Book after book after book. And then three more readings of THE POLAR EXPRESS. That Van Allsburg draws AMAZING pictures...but his text is for crap...

Nap time would also be preceded by an hour or more of reading. What we didn't spend on grapes or Thomas the Tank Engine trains, we spent on books. (So, it floored me, down the line, when the child with the professorial vocabulary had such a HARD TIME learning how to read...)

There was the language therapy the child should have been eligible for, if anyone could have diagnosed him at that point...

When we weren't reading, we played together. At two and a half, the child could tell the difference between an isosceles and an equilateral triangle, an octagon and a hexagon. He liked the Tupperware shape sorter, so by golly, THAT'S WHAT WE PLAYED WITH!

That is: when I wasn't setting up lavish train layouts with wooden track. Those train layouts taught a great deal: accidents happen, problems are solveable--not scary, tipped bridges can be turned upright, magnets go front to back, everyone makes mistakes--even mommy...

There were our beginnings of life skills and parallel play...what Dr. Stanley Greenspan now calls "floor time" and what many progressive educators are beginning to prefer to the rigid therapy of ABA...and we definitely did it the prescribed 30 or 40 hours a week...


What I realize now is that I wasn't a saint--absolutely not. But I did do a good job. I wish I could go back and tell that younger mom, "Hey! What you're doing is really, really hard! You're not crazy to be exhausted and scared. But he's gonna be amazing."

Absolutely amazing.

I'd probably wind up screaming it at her, though. My days are easier but I'm still no paragon of patience.

Inside the Belly of the Beast

We had the boys' annual IEP reviews this morning. Even though we are home schooling, the district keeps paperwork on the boys so that if we decide to send them back to public school, my guys won't have to wait months for needed services and programs to kick in. Additionally, any services that they are eligible for continue as long as I am willing to bring them to the school to receive them.

Services, as it turns out, are different from programs. So, even though the boys were found eligible for resource room (ie: small group instruction), they do not receive resource room if we home school, because resource room is a program. They are eligible, however, for the service of social skills classes. And I said that, yes, we would be interested in taking advantage of that program for both boys--I'm good, but there are certain programs even I cannot duplicate at my kitchen table...

Ben would also have been eligible for a full-time aide if he were in public school, but would not have been found eligible for the inclusion classroom. Least Restictive Environment, in our case, would apparently mean that having Joe-in-eighth-grade's mom standing next to Ben and his locker, reminding him to pack his math book for sixth period would be preferable to keeping him in the same classroom all day long without a locker while his teacher helped him develop requisite organizational and planning skills...

Not only is the stigma of having a neighborhood mom as a shadow undesirable when one is in middle school (particularly when one is socially handicapped already)...my experience is that a neighborhood mom's first instinct is to do for the child rather than to teach the child so that he can develop the requisite skills for himself. This, to my mind, is the key difference between using moms-- as opposed to teachers-in-training--as aides. Well, and the mom is less expensive. And easier to find...


So, our first half-hour was spent going over Ben's paperwork. A couple of eyebrows were raised when the idea of inclusion was so summarily shot down for him. Particularly those of the school psychologist--who had strongly encouraged this option for Ben when we met last fall for his triennial review...

His teacher actually started to shake her head, but then caught herself...

I would have been heartbroken if Ben were still in public school--and then readied myself for yet another battle, yet more lost time, more disappointments and failures for Ben before he was found eligible for treatment he legitimately needed. As it was, I just shrugged. It was so freeing: not having to take on that worry...

The second half-hour was spent talking about James. Many of the same people were present: school psychologist, resource room teacher, CSE (Committee of Special Education) chairperson...but this time James' old teacher sat to my right, replacing Ben's teacher.

Mrs. Resource Room spoke of James' willingness to work but difficulty with sequencing and organizing thoughts when writing, and also about his inability to generalize skills learned with her into the general ed. classroom. Mrs. Psychologist talked about James' positive attitude and willingness to search out help from an adult when he was confused, but also emphasized his difficulty in negotiating new social situations and his lack of eye-contact when dealing with peers.

"Is he coming back next year?" his teacher asked then.

"No, not next year," I told her. "I have the ability to help him with skills one-on-one right now and I believe that is what he needs at this point."

"But the socialization!" his teacher began...

"We belong to a home school group now," I tried to assure her.

She shook her head, "It's not the same, it's not the same! Look, we can make sure that he isn't put in the same classroom with...certain other students..."

"James may come back to public school at some point," I told his teacher, "but it will only happen when I believe the skills he needs to do well in a public school environment are in place."

"Well, you are his parent--you have the right to make these decisions for him," she replied, clearly dismayed.

Right!

...Said the woman who never contacted me to make sure that James was all right after the school bully physically and brutally attacked him two days in a row on school property--LEAVING BLACK AND BLUE BRUISES BOTH TIMES. (The same school bully who PS: according to a Dad I chatted with this weekend, has moved onto physically attacking yet another child within this woman's classroom...).

But sunshine and light. That was me. I am not here to seek retribution, to lay blame! NO! I am here to make sure that my children get whatever services they are eligible for...

...and, so, because it is in their best interests to create and maintain as positive a relationship as possible with the people involved this bureaucracy, I grit my teeth and say nothing.

The Joys and Drama of Gross-Motor Dysfunction

me

(skips out of the door, leaving children behind with newfound babysitter, happy to have just an hour on my own...) Okaaay! G'bye!

Ben

Okehhh--oooooooohhhh... (crash as he falls down the last three stairs and knocks over and DESTROYS a lamp lurking there).

me

(thinking, to self) SO CLOSE! I almost made it to the car! DRAT! (re-enters the house, surveys the damage, hmphs at the complete impossibility of repairing the torchiere that now bears a striking resemblance to Marie Antoinette post the cake-eating remark...)

(aloud) You know, SOME people would have had the presence of mind to fall on the UGLY lamp that I've wanted to get rid of for years now...

Ben

SOME PEOPLE would stop and check and see if their son is okay after falling down the steps! Besides, the other lamp is all the way on the other side of the living room!

me

That torchiere really looked nice right there, too...

Ben

You mean in the space where it almost IMPALED ME? That lamp almost KILLED ME!

me

Ooooooooh, c'mon! I see no blood, no tears! What I see is a perfectly healthy looking boy standing next to a pile of toothpicks that used to be the best reading lamp in this living room!


An ad paid for by the "Home Schooling Moms of Spectrum Children are Not Saints" Council.

Eosinophilic Pustular Folliculitis

I posted this pic in color for a reason: I thought it was important to put up a detailed image of one of these things--as detailed as James would allow. And I didn't want to make too big a deal of it, after all. Didn't want to frighten him or make him think this was too big a deal--beyond asking him to avoid picking at it, that is.

The image is enlarged--that's my thumb and forefinger parting his hair. The pustule is irritated because he'd itched it and torn part of the scab off...

EPF is what the dermatologist would call this: eosinophilic pustular folliculitis. At its worst, James would have dozens of these on his face and dozens more on his scalp. Chronically. From the time he was a year old until after his third birthday, he always had a face and scalp full of these open invitations to fungal and bacterial infection. Just seeing one today made me cringe and feel cold inside. He's been fighting a cold and a cough. Is it a coincidence or is there some other reason this showed up? I haven't seen one in years.

We don't know exactly why they abated. Going on the antibiotics probably helped. Staying healthy for more than a couple of days at a time also could not have been a bad thing...

GOHD! I HATE THESE THINGS.