Wednesday, April 13, 2011

Must See TV

Rarely in my blog entries do I ever promote anything. Mostly because I'm far too disorganized but also because I don't want my blog to be anything more than advocacy, story and resource. That said, I need to pass along a press release I received regarding an upcoming six part series on the PBS NewsHour focusing on Autism that will begin airing on Monday, April 18th. It looks like it is going to be a fantastic report and definitely a 'must see' for anyone dealing with the struggles and mysteries of autism.

Knowledge is power. I'm hoping that you'll tune in to the series.

ARLINGTON, VA (March 29, 2011) – Autism - it’s a developmental disorder that has become increasingly prevalent, affecting 1 out of 110 American children. Despite years of study, little is known about its cause and access to treatment varies. Meanwhile, hundreds of thousands of American families hungry for answers struggle to care for the unique needs of children with the disorder. Among them, Robert MacNeil, co-founder of the PBS NewsHour and grandfather of Nick, a 6-year old boy with autism.

“I’ve been a reporter on and off for 50 years, but I’ve never brought my family into a story … until Nick,” MacNeil said, “because he moves me deeply.”

MacNeil and producer Caren Zucker tell the story of Autism Today in a 6-part broadcast series beginning Monday, April 18, 2011 and a robust online component where viewers can join the conversation. Ms. Zucker has produced many stories on autism and is the mother of a 16-year old son with autism.

Monday, April 18
An introduction to Nick and autism as a whole body experience: MacNeil brings viewers along on a visit with his daughter and grandson Nick in Cambridge, Massachusetts, to see how autism affects the whole family, including his 10-year-old sister, Neely. Nick experiences autism not just as a disorder in brain development but also as physical ailments affecting the whole body.

Tuesday, April 19
Autism Prevalence: Why are the numbers of children with autism increasing? At the UC Davis MIND Institute in Sacramento, California, MacNeil sees the wide range of different behaviors that comprise the autism spectrum. Anthropologist Richard Grinker argues that the rising numbers of children with autism is explained because conditions previously given other names, like mental retardation, are now included in the autism spectrum. Scientist Irva Hertz-Picciotto says the wider definition only partly explains the increased prevalence, pointing instead to a variety of environmental factors.

Wednesday, April 20
Autism Causes: The rise in autism numbers has caused a surge in research to find the causes. For the latest thinking, Robert MacNeil speaks with four leading researchers: Dr. Gerald Fischbach of the Simons Foundation, Dr. David Amaral of the MIND Institute, Dr. Martha Herbert of Harvard University and Dr. Craig Newschaffer of Drexel University.

Thursday, April 21
Autism Treatment: Although children with autism see doctors periodically, they go to school everyday. It is the school system that bears most of the burden of treating children with autism because treatment means education. MacNeil visits two schools in New York – a public school in the Bronx teaching 700 children with autism and a charter school created in Manhattan as a model of possibilities in educating children with autism. With only 30 students, it can use one-on-one teacher/student ratios employing intensive Applied Behavioral Analysis – the gold standard treatment for autism.

Monday, April 25
Adults with Autism: Although federal law mandates educational services for children with autism, there are virtually no services when they become adults. MacNeil profiles Zachary Hamrick in Mahwah, New Jersey, about to turn 21. As his family contemplates the uncertain future now facing hundreds of thousands of young people like him, his parents ask themselves, "What will happen when we die?"

Tuesday, April 26
Autism Policy: The NewsHour series ends with a discussion of the public policy issues raised in the series, including the enormous discrepancy in the quality and availability of services for children and future adults in what the federal committee that determines research priorities for autism now calls a "national health emergency" with a panel of experts including: Dr. Thomas Insel, Director of the National Institute of Mental Health, Catherine Lord, Professor of Psychology, Pediatrics and Psychiatry at the University of Michigan, Ilene Lainer, Executive Director of the New York Center for Autism – a private advocacy group, and John Shestack, a Hollywood producer and the co-founder of “Cure Autism Now” a former advocacy group.

Sunday, April 10, 2011


I've been deep in one lately. Unable to accomplish much that I set out to do. Mornings go like this: Make coffee. Have a sip. Put coffee down (somewhere that I won't remember like on top of the dryer, on the bathroom sink, up in Sean's closet or near the pet food.) Find coffee. Re-heat coffee. Sometimes can't find coffee at all and have to make another cup (will find coffee later -- most likely in microwave when I'm warming up something for dinner.)

Next, wake up Sean.

"Let's get up Sean,"
"I'm not Sean," a grumble rises from a tornado of covers.
"Who are you today?" I ask.
"I'm Bertie." A red head pokes out.
"Okay, rise and shine, Bertram."
"It's Bertie."
"Get up, Bertie."
The red head retreats back into the cave of blankets.
"I mean it. Get up. Now. Come on, Sean."
"I'm not SEAN. I'm BERTIE."

And this goes on and on...

Finally the heat clicks on and Sean/Bertie hops out of bed and perches on the heating vent.

I fumble through his drawers and pull out clothes, grab shoes from the closet and bribe him with breakfast if he can get dressed quickly. Well, maybe not quickly, but at least get dressed.

Breakfast. Smoothie. Plop all the ingredients into the blender. Whirl. Find Rice cakes. Find Peanut Butter. Where's my coffee?

Let dog out. Beg dog not to bark. Just do your business. Dog looks at me like "Where are you going? Don't you want to hang out in the rain and watch me?"

Back to bribing Sean into kitchen with smoothie. He reminds me, losing his patience that he is Bertie. The dog is barking. I can't find my coffee.

Clean out blender. Make lunches. My oldest is easy. Turkey and cheese sandwich, milk, chips and a granola bar. Sean, not so easy. It's as if I'm packing lunch for a squirrel. Almonds. String cheese. Potato chips. Fruit leather. Soda water or juice (whatever I pack drink-wise always comes home unopened.) Rice bar. What Sean begs for everyday is the even unhealthier cousin of Hostess -- Little Debbie. Every day it goes.

"Can we get Little Debbies?"
"Why not?"
"They could make you really hyper."
"I like hyper."
"Well the rest of us don't. Besides, they're not good for you."
"Why not?"
"They could last forever on a shelf."
"I like them."
"We are not getting them."
"Why not?"

Sean's form of crack. He admires Little Debbie at the grocery store, in the lunchboxes of fellow students and he googles them on the computer. Most days my computer is on the Amazon page with that happy-go-lucky Little Debbie peddling her Honey Buns or Cosmic Brownies. Don't be fooled by the rosy cheeks and pretty smile.

Wake up my oldest. Remind him to go through the garage and CLOSE the garage door (if I don't specifically tell him, the garage door will be left open.) Also, put the dog in his crate. Don't forget lunch. And lacrosse practice tonight. He nods his head but I'm pretty sure he'll fall back asleep. I leave the phone on his dresser. It's off to school.

"You tell Miss Judy that I'm Bertie?"
"She will call me Sean."
"Actually, she will call you Bertie. She is way too nice to you, Sean."
"I'm Bertie."

I call home. My oldest picks up. He is up and moving. After I hang up I wonder if reminded him to close the garage door.

I stop by the office and help out a little bit. Head to the post office. Do a little grocery shopping. Come home -- yey! the garage door is closed. Clean up the kitchen. Walk the dog. Feed the cat. Do some work for my classes. Beg myself to write something (opt not to, wonder if there's a Top Chef marathon on Bravo, look outside, watch rain coming down in buckets, wonder if the backyard grass will ever dry and start looking for my reading glasses.) Usually the search for the glasses (and mind you, I have at least half a dozen pair) can take anywhere from a minute to half a day. Often times, they are perched on my head and when I'm at my wit's end looking for them I'll walk by a mirror or a reflection in the sliding glass door and see them.

Look at clock. Geez, where did the day go. Start to feel overwhelmed. Need to check in with friends. Need to answer e-mails. Make appointments. Figure out what I should cook for dinner. Do laundry. Write scolding letter to Alaska Airlines regarding "Spring Break Travel From Hell Nightmare". (Oh, that's another post for another day...) Start book that looks to be the size of the Holy Bible -- must read almost 600 pages by Wednesday for book club.

Why am I just standing still looking out at the rain? My coping skills are horrifying lately. Why is it so tempting to lay under the glass coffee table in the fetal position and take a nap? Why is the dog barking? Why can't I just organize my life?!

Hustle to the bus stop. Here comes Sean with a name tag that says, "Buster."

"Who are you now?" I ask.
"Your name tag says Buster."
"I'm Bertie now."

I read the note from class. He has had three name changes: Bertie, Blythe and finally Buster. She tells me the name tags seem to be working. He is less anxious and isn't persevering as much on names. Sometimes I can't believe this is my life. I wonder if Miss Judy feels the same.

Sean/Buster/Bertie wants to talk. He wants to spell. He spells Big Big World. He spells Captain. He spells Wiggles. I wish it wasn't raining so hard and he could play outside. I wish we could get a game down from the closet and play it. I ask him if he wants to play a game or something.

He looks irritated. "I want you to talk to me." he says. Which means he wants to spell the same words over and over and then he wants me to spell them. He hops and stims and spells words. I try to gage if he seems happy. Some days I just want him to be happy and not worry so much about him and his inability to play games or have friends or to carry on a conversation that makes sense to another person. It's hard to imagine how difficult that can be for him and how much I take that for granted in my everyday life. I try to remain upbeat. I make a deal that we can spell words for fifteen minutes but after that we have to something that I want to do (and clearly drinking martinis with a ten year old can't be an option.) I set the oven timer and when it buzzes I tell him we are going to go downstairs and he can play on the exercise ball while I fold clothes.

He is my little shadow. He hops and does amazing tricks on his ball and I try to remember that we all have fun in different ways and he seems to be having fun. And that has to be enough for now.