Susan's Blog

Monday, July 9, 2007

Peanut Butter and Jelly(fish)

Peanut, peanut butter!

Look what I saw today! No, I was not swimming too deep in Cape Cod. My sister is visiting and we took our kids to the Boston Aquarium. Laura took this picture and it came out far scarier than the actual shark. Truth be told, the scariest thing I saw there was a jellyfish creature called Thetys Vagina. No lie. I stared at it for a while (well, why wouldn’t I?) trying to figure out who was this unusual Thety? Why? What?
And my sister the doctor/scientist explained matter-of-factly: “It’s because of invagination…all of the folds.” Oh.

Went up to the cafe to eat “lunch”, only an hour later (at 11 a.m.) Paul had a squooshed peanut butter and jelly on a hamburger roll (don’t ask, I ran out of bread). He nearly cried, poor thing. Max, Ben, and Kim had bad bagels. Luckily Kim shared hers with Paul. Nat was not there; he has school all year around which made the trip easier but the Mommies sadder because we knew how much he loves the Aquarium, especially the Pinklins. (sound it out) $90 and 4 crabby kids later, we got jelly donuts and went to Faneuil Hall. Now that was dull, except when Ben fell off the statue, trying to escape from the picture-taking.

My nephew said, “This is my second time ever on a train!” Max was incredulous. So was I. A real case of Johnny Town Mouse and Timmy Willy.

My Comeback Came and Went

A really great comic strip came my way via one of my autism email lists (Thanks Lisa!). A huge topic of conversation among autism parents is “the comeback that got away.” Why do our words leave us when we have an obvious situation demanding that we step in and straighten out some jerk? Like the teenage twits on the beach who were laughing and staring at Natty. I should have said, “_______” Instead I flung sand on them. Or the family who kept staring and whispering about Nat and Max (because of his dreds, I guess). Eventually when we were leaving I caught the dad’s eye and stared at him. But he smiled at me, so I waved. D’oh. I waved! Why am I such a nice girl?

What is the best comeback you have ever had for a rude person? Maybe I’ll get to use one of them one day.

Nat’s Keys to the Universe

Nat has not told me in so many words, but judging by what makes him smile the most, here is a list of what I believe are what Nat would say are his Keys to the Universe:

1) Eating a meal with my family all together at the same time
2) Salt and pepper by my side
3) Sun
4) My yellow tee shirts
5) A good bit of word play (“Aunt John and Uncle Laura”)
6) My wetsuit in the cold ocean at Cape Cod
7) Sneaking a thumbsuck
8) The Beatles
9) Fudge
10) Special Olympics Swim Races, especially winning a medal

Saturday, July 7, 2007

The Grass is Always (Wal)Greener

Hooray for Walgreen’s! They are setting an example for the rest of the country. Why the hell not go that extra yard and hire a lot of people with disabilities? Are non-disabled people always such a bargain? There is a huge untapped workforce among those with disabilities. With a little creative thinking and openmindedness, we could be employing a full range of people and who knows what kind of positive changes that could bring?

My first phone conference meeting with the Young Adult/Adult Services Subcommittee of Autism Speaks went very well, by the way. They are a dynamic group of people from all over the country, real powerhouses in autism resources. Per my suggestion, they are going to set up an Autism Works section on their website and they are striving to become a clearinghouse of information and resources for the employment of autistic people. We want to know about good role models, employers who, like Walgreen’s, are moving beyond society’s barriers to build a more dignified, diverse workforce. We are also going to be writing a paper on transition and pre-voc training, what educators need to know, as well as working with policymakers towards more legislation that funds employment resources for the disabled. All very exciting, exactly what I wanted to be doing, but with the muscle of Autism Speaks behind the effort it should bear some interesting fruit.

Wednesday, July 4, 2007

Gone With The Whinge

[Ben took this photo!]

Sitting here in my parents’ Cape house on their porch. They are here now, all is right in the world, thank God. They are watching a movie I’m not interested in. We are here to check teh internets, as Max would say. It has been so good for me to be without Precious, I must say. I live in the present when I’m here.

I am so proud of the boys. They are without their usual hobbies (mostly teh internets related) because our lovely rental hath no internet, and so they are forced to do other things. Max has been honing his photographic talents, and I am amazed at his beautiful eye! He loves to do insanely close close-ups of things, not people (except Benj, who is kind of a thing!) He is such a good-natured soul. He will fight you at first when it comes to doing anything different or eating anything different, but if you gently push, he will do it and usually likes it. Well, not food, but everything else.

He and Ben were watching Foster’s Home for Imaginary Friends, and suddenly they just shut it off and announced that they were making a movie! With Ned’s help they filmed a stop-motion frame-by-frame of Ben scooting along the grass. Tis very cute.

Ben has gone back to drawing story after story. His animation is fantastic. It’s too bad so much of his content is violent, but it is violent like Pulp Fiction; kind of cartoony violent. Is that better or worse?

In the water Ben is fearless and oblivious to the cold. He and Ned shared a boogie board today and actually rode a few waves that way. I used the board for the first time, even though the water was 58 degrees. It was so hot out that I was frying, so I didn’t mind the extreme cold of the ocean. There was fluffy, grasping seaweed everywhere, which I just hate. Plus a lot of rocks to walk over to get to the sand bar, and I cut my foot. So back to the blanket to read and work on my illicit tan.

Nat has been a little less eager to swim, even with his brand-new wetsuit. Ned kept joking that the wetsuit was defective because “it never gets wet!” Until Nat finally initiated it yesterday, when it was a balmy 60 degrees in the water. He and Ned were out for a pretty long time today. He has one very well on this vacation so far. A few outbursts, but two out of three of them were totally understandable. Today there was a brief shriek and I think it may have been an expression of discomfort with all that sun.

When they come back to the blanket from swimming, they always have to eat. I’m the designated Fooder. I make everyone have fruit first before their oreos, goldfish, and pretzels. I drink Diet Coke with Lime and one or two Atkins bars. Yes, I’m back on Atkins and the universe has righted itself again. I don’t know how you other people (carbivores) do it. Eating carbs made me crazy. All I wanted to do was eat and eat because I could never eat enough (too many calories). The only thing I could eat that I didn’t have to count was carrots! I felt like a horse. Do I want that? Neigh! I tried it for four days and by the fourth day I had eaten 1,000 calories by lunchtime — all in fruit and “non-fattening” things! I was in danger of becoming an exercise bulemic because I kept going on long, grueling bikerides or bellydancing to burn off what I ate!

Back on Atkins I am sane again. I am full after I eat, because I eat protein! Soy, turkey, eggs, cheese. I can imagine all the voices of Gerald O’Hara, Rhett Butler, and Ashley Wilkes, egging me on: “Protein, Katie Scarlett! It’s the only thing that lasts, the only thing worth die(t)ing for!”
“It’s from this that you get your strength: the red meat of protein!”
“Something you love better than carbs, though you may not know it: protein!”

“Protein! Protein! Protein! Atkins. I’ll go back on Atkins. I’ll think of some way to get thin again. After all, tomorrow is another day!”

Sure it’s boring but I’m never hungry. If I have to lie(in the sun), steal (a few moments for myself), cheat (and let Ben win at arm wrestling) and kill (time blogging), As God is my witness, I’ll never go hungry again!

Monday, July 2, 2007

Thoughts On An Anniversary

Now a popsicle orange sun sets on July 1, melting into the purple bottoms of long flat clouds. Flashes of light are filtered through short muscular trees.

But in the morning the clouds warred with the sun; half the sky was scrubbed blue, half, hairy gray. Which would win? I took sips of not-sweet-enough coffee and watched. Too lazy to add more Splenda, I read a Cosmo that I had already read. A sexy short story, badly written, surprisingly arousing. Mind wandered to Ned, of course, buried under silky beige comforter and four pillows. Sleeps down deep, like he’s under water.

There suddenly appeared to be more blue than gray now. More coffee would help. Yes, I think the day will be saved, after all. No need to come up with an alternate plan. No need to explain a hike in the woods to Nat. But shouldn’t we do something different sometimes? But no. The capricious ocean waits, rolling impatiently in her bed of warm soft sand. The sweetness of sunblock in the air mingles with the quieter, heavier, female smell of the sea.

Ned wrote N+ S 23 in a heart. Max, Ben, and I built structures with sand that felt like a friend’s warm back when you pat it. I tried to get Nat to touch the sand, to help with the tunnels and the mounding. He said, “Yes,” but walked in the other direction. How many years, now, have I been trying to get Nat to actually play, NT-style, with the sand? But he still does not enjoy it at all. He would rather run in a large figure eight, looping around several families, in a crescendo of silly talk and puppet hand. Again the morning’s come, again he’s on the run, sunbeams shining through his hair, appearing not to have a care. Today, a gift to me, no one noticed.

Yesterday was different. Yesterday two French Canadian teenagers, maybe even older, grinned, pointed (subtly) and stared in what seemed to be disbelief. Believe it, Baby. C’est l’autisme. Ned said maybe it’s just that they think he’s cute. Ned said that I should use it as a “teaching moment.” Instead, I shook off a sandy chair in their direction and watched the particles land all over them. “I don’t owe anyone an explanation,” I said loudly, as they brushed the sand away, “especially when people are being rude.” I put down the chair and wiped my hands, while they looked at me, again in disbelief, waiting for an apology that never came. Jamais, mes amies. Vengeance is mine, sayeth the Lord (and the Protective Mama).

Thinking of Mom and Dad, not here because of health problems. Life picking on them, nibbling away at the edges. They brush it away furiously like gnats at sundown. Dad should be here. The honeysuckle and privet release a toasted marshmallow aroma when you ride by on your bike. A bobwhite bird called in my yard in the morning; Dad’s favorite. The peaches are fist-sized, fleshy and yellow; Mom would love them. I had two today in anti-Atkins frenzy.

I’m a bride today, and I feel special. Even though I also thought of men in my past. Well, I’m human. I just do it when I’m bored. Minds can wander. Thoughts form, run wild, and stumble and lead us to learn about ourselves. They stoke the fire, sharpen our awareness and yearning. But home is here.

We all five ate at our favorite restaurant, Moby Dick’s in North Wellfleet, almost into Truro, way up Route 6 where it’s marshy and meadowy and scrubby. Nat ate his first French fry there, sixteen years ago. Tonight we all shared two desserts. We gorged on hot fudge and chocolate brownie.

Max and Ned went to see the sunset and take pictures; I danced in blue and white and gold and Ben and Nat watched The Adventures of Billy and Mandy together. Well, Ben watched it and Nat watched him. I don’t blame him; I think Ben is fun to watch, too.

The sky is almost completely dark, a deep sea blue stained at the very bottom with gold and pink, ocean meeting sand. My sons, blond, tan, and strong sit and draw and talk together, while the third stomps happily around the room, laughing softly. My husband of 23 years offers to read to Ben. Handsome and sexy, Ned still has the power to make me feel like he did back in our dorm days, like a crazed, sleepless, and lovesick teeanger. Random Universe, my eye.

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