Autism: Until Then

We are flying to California tomorrow for a combo week of relaxation and parent training at the Koegel Autism Institute at UC Santa Barbara. It was almost two years ago that I put our family on the wait list for this program, so I'm excited that our number has finally come up!

I am not taking my laptop along. I need a break from e-mails and the temptation to perseverate on autism-related blogs.

In the spirit of one of my favorite autism bloggers, Maddy at Whitterer on Autism, I leave you with a listing of some of my favorite reads over the past few months.

Perseverate away!

Can you hear me now? Is this thing on? by Jess Wilson at Diary of a Mom

Just as they are by Susan Senator

First contact by by Koe Whitton-Williams at The Half Life of Linoleum

My child has autism and all I got was this lousy hair scrunchie by The Mad Housewife over at I am the Giraffe

Knowing written by Matt Usey who blogs at Autism Spot

Autism takes a holiday by Drama Mama who blogs at Like a Shark

Until then...

Autism: I Like Dreamin'

I woke up the other morning feeling all warm and fuzzy.

Relieved…

I’d been hanging out with my friend Timmy. Russert.

He was there with me, smiling, cajoling, in my dream. It warmed my heart to see him happy and okay. We laughed and talked like old friends do. Obama. McCain. White boards.

Of course in the real world, we are not old friends. Of course, I’ve never met him. Of course this dream is wacky…

But it felt very real.

And it made me happy. Tim was happy. I was happy. I woke early, with a smile on my face.

Amy is my fellow early riser. Up with the sun on most days. This morning was no different as she wandered into the kitchen while I poured my first cup of Breakfast Blend.

“MMommm,” she muttered, rubbing her eyes as they adjusted to the light, “I had a dream…”

Assuming the worst, I grabbed her head and pulled her close.

“Oh no sweetie, what was it?”

Too much Scooby Doo I thought to myself. Always gives her bad dreams. She should not be watching Scooby right before bed.

She looked up at me with those gorgeous blue eyes of hers.

“There were these people, scientists I think, and they found a cure for autism…All I had to do was pick the right medicine.”

I rubbed her head as she went on.

“I looked at all the different types of medicine and finally I picked the liquid medicine. I gave it to Jack..

And he started TALKING.”

I wondered to myself how this is screwing with her psyche. Having that built-in worry that she can’t even escape while sleeping.

But there she stood. Taller than she should be. Where did the time go? My baby girl, now loving big sister, wearing one of my old t-shirts that hung down to her knees. The one she’d slept in while dreaming about her first conversation with the little boy with the same gorgeous blue eyes. The blue eyes that were closed in peaceful sleep in the room right across the hall.

Maybe one day he’ll tell us his dreams too.

Autism: Jesus Take the Wheel

Head under water,
And they tell me to breathe easy for a while.
The breathing gets harder, even I know that.
~ Sara Bareilles

You know, you have varicose veins.

Your hair is too dark and red.

It’s amazing how a person with such delicate wrist-bones could have such big legs.

What size are your feet for heaven’s sake?

You’re going to have to have knee replacement surgery if you keep running like that.

How can you just throw your extra pillows on the floor when you’re sleeping?

What is it with these Yankees? They are just the rudest people.

How can you not know what kind of wood your kitchen cabinets are made of?

Does that man have some problem with the type of sandwich I ordered? Why is he looking at me like that?

It’s such a shame you have such a smart dog but she has no obedience training.

Good heavens! I've never seen you so thin. You’re wasting away to nothing. (Okay, I’ll take that one, even though I’m five pounds heavier than the last time she saw me…)

Buying the Cascade with the Dawn in it is just too expensive.

It’s just insulting that the piano is not the centerpiece of the living room. The harp should always face outward. It absolutely must be moved.


******

These are the random observations of my Big-Haired-Texas Grandma. She’s visiting for a week.

That’s right.

An entire week.

With every passive-aggressive remark, I feel the slow burn grow hotter in my chest. I’m gonna blow. I just know it. And blowing would be detrimental for all parties. There is no winning with Big-Haired-Texas Grandmas.

She is difficult. (Think Bunny McDougal meets Church Lady meets Aunt Bea.) And please let me qualify my candid remarks by saying she has a reason to see the world in such a glass-half-empty sortof way.

Her father died before she was born. Her husband (my grandfather Jack) died of cancer when my dad was only 5, leaving her a very young widow with a very little boy.

And that little boy, her only child, was diagnosed with cancer when he was only 29. He died 4 days after his 40th birthday.

She’s had her share of sadness.

And it’s my duty to make sure she’s okay. To let her know we love her.

Love is a verb. Love is a verb. Love is a verb. I chant this over and over to myself…



Never fear. Little Jack to the rescue.

He senses Mommy’s stressed-out vibe and springs into action.

After a day or two, he decides that he will engage with Big-Haired-Texas Grandma. He gets up close and personal. Tilts his head to the right. Smiles broadly so his dimple shows.

Big-haired Texas Grandma melts.

No one, and I mean no one, can resist the dimple.

Before long, Jack has her retrieving items he's requested from his PECS book.

She’s here until Sunday.

She confessed she’s actually having a good time.

Thank you Jack. Mom owes you. Big-time…

Oh, and they are spider veins, thank you very much.

Autism: The Wonder Years

Jack’s toe is black and blue. I discovered it this morning when I was getting him dressed for school.

What happened? It looks awful…

I wonder…

And I wonder what he thinks when Amy talks to him about going to camp with her one day. He stares out of the car window every morning as we drop her off. Kids are laughing, playing … fighting. The blue swimming pools lie ready for the splashing and bumping of crazy day-campers. Jack sits in his booster seat, bright orange crocs dangling. He cries as we drive away. Does he wish he could stay?

I wonder…

As we drive to school I tell him again about the field trip he’s going on today. The kids from Nashoba will be piling into cars and vans and heading to the beach. Jack’s swim trunks and sunscreen are packed. I put an extra-large drink in his lunchbox, just in case he gets warm. Sun. Sand. He’ll squeal with delight when he gets there. The kid absolutely loves the ocean. I hope he understands me now as I talk up the trip in the car.

I wonder…

What’s his favorite color? Is he color-blind like me?

What is about windows? Why does he like to stand with his nose pressed to the glass? Doesn’t he get tired of the continuous posture?

I wonder…

So many mysteries.

So much love.

My little wonder boy…

I wonder if he has any idea how much I love him.

Somehow, I think I know the answer to that one...

Autism: The Final Word on Pennsylvania HB 1150

Governer Rendell made it official yesterday, signing HB 1150 into law at a ceremony held at the Vista School. (See news coverage here.)

Considering the fact that the Wall Street Journal has a lively discussion going on about how autism impacts families financially, the timing couldn't be sweeter. Brings back a memory of mine, standing in the parking lot of the preschool for children with autism that Jack attended in Texas, talking to three other parents. Two of those three were in the process of selling their homes, just to pay for the evidence-based treatments that their pediatricians and neurologists prescribed for their children.

Bottom line: You shouldn't lose your home because your child needs medically necessary treatment. And I've seen this happen over and over and over. (Sort of explains all my half-crazed advocacy posts, doesn't it...)

Pennsylvania has taken a big step forward in providing solutions for families. Heads up America. Time to follow suit.

I leave you with a note from Jim Bouder, one of the key players in pushing the Pennsylvania legislation through:

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Friends:

I’ve been asked by many of you to say something about the situation that has arisen within the autism community in Pennsylvania. The situation is that together we have achieved this marvelous victory. Whatever differences we had in the past over strategy and tactics, those differences have resolved themselves in our joint accomplishment.

I believe, as a starting point, there are three facts we can all acknowledge: (1) Autism Speaks' actions helped facilitate the necessary release of HB 1150 from the Senate Banking & Insurance Committee and (2) Pennsylvania's parents and advocates succeeded in providing Speaker O'Brien with the additional grassroots support he needed in order to make the necessary changes to the legislation, and (3) HB 1150, the strongest autism bill in the nation, was signed into law by Governor Edward G. Rendell yesterday as Act 62 of 2008. If we can all take a step back and recognized that 1 + 2 = 3, then we can begin moving on together toward bigger and better things. While we can and probably will continue to struggle with the details surrounding 1 and 2, we should all be able to agree that getting to 3 is a very, very good thing.


There are many, many people who deserve our thanks - first and foremost to Speaker O'Brien, who continues to advocate for our children in Harrisburg with unequalled zeal, and his staff who did such a fine job supporting the Speaker's efforts behind the scenes. Also to Estelle Richman, who has quickly become a national leader in the quest to meet the needs of children with autism and, of course, Governor Rendell who has made passage of this legislation a priority for his Administration, and to those in the Departments of Welfare, State, and Insurance that devoted so much time to help us achieve our goals. In the Senate, Senator Orie is well deserving of our thanks, as is Senator White and his Chief of Staff, Joe Pittman, who also worked hard to make yesterday’s event a possibility.

To my Vista family, you all have been remarkably supportive with both advice when I needed it and with patience at the times when this issue required my full attention. To Cindy Waelterman and Karen Woodings who did such a fine job getting the message out to the grassroots at the 11th hour. To Eric Scott who gained a grasp of the issues so quickly and provided much-valued assistance as we engaged in difficult negotiations with HB 1150's opponents. To all who submitted comments to HC4 or testified at the April 1 hearing. To every parent, grandparent, uncle, aunt, neighbor, and advocate that picked up their phone or sent an email or a fax to your legislator, great thanks belongs to you too.


Over the course of the past year, I have developed friendships with four people who comprise the backbone of the Autism Speaks Government Relations team in Pennsylvania. I deeply appreciate the year I've spent working with Eric Settle. Eric is a skilled lobbyist and I learned much from him - much that I hope to take to my next project. I sincerely hope our paths cross again in the not-so-distant future. Stuart Spielman has been a consistent and thoughtful sounding board and his feedback increased the quality of my technical filings and testimony offered in support of HB 1150. Anyone who questions Stuart's integrity simply doesn't know Stuart. Shelley Hendrix taught me much about the formerly unfamiliar territory of managing a grassroots push. She championed Louisiana's counterpart to or legislation and it became law exactly one week before Governor Rendell signed HB 1150. Her commitment to children with autism is unquestionable. Without doubt, Elizabeth Emken had become a valued friend and ally whose vision, in many respects, runs parallel with mine. Her drive to see our nation become a more hospitable place for people with autism is admirable. They are much deserving of all of our thanks and I look forward to working with them in the future.

And last but certainly not least, I thank my family for their support and patience as I joined you all in doing this good work.


HB 1150 being signed into law yesterday was a day worth celebrating. Pennsylvania's families and policymakers working together with Autism Speaks for more than a year to advance HB 1150 to a place where its opponents no longer had any credible excuses to let it die. We answered every question, we jumped through every hoop, and we cleared every obstacle. HB
1150 becoming law is an achievement that we have much to take pride in.

Going forward, we all need to remember the collaborations that got us here and we need to rebuild them and make them stronger. I intend to do what I can over the course of the coming months to encourage a dialogue that promotes our coming together as friends and, eventually, as a collaborative unit.

With kind regards,

Jim Bouder

******

For more information on Pennsylvania HB 1150, go to http://autismvotes.org/pennsylvania

Autism: The Father Factor

I’m multi-tasking this morning, listening in on the IACC workgroup conference call while having my piano tuned.

Bob, the piano dude, arrived an hour or so ago. I went through my usual spiel about my beautiful piano.

Twenty-five years old. Kawai. Nope. Not a baby grand. Just a small grand.

It was my music-loving dad’s...Beloved.

I know. I know. I’m a grownup. I shouldn’t be so damned sentimental.

It doesn’t matter how long I outlive him, it still pains me to talk about him that way.

In the past tense.

I want him to be current. I want him to be present. I want him to tell Bob, the piano dude, what to do.

Bob is polite as I show him the cryptic note scratched inside the piano as well as the yellowing piece of graph paper I keep inside the bench.

Instructions from my dad, the original Jack. He tuned it himself. Ever the engineer, he liked to get under the hood. Tinker around. Figure it out.

So Bob is working. Attempting to tune. Unknowingly attempting to make something of my past-tense dad feel present.

Against the backdrop of octaves and intervals, I listen in to the IACC workgroup … struggling, discussing … trying to put their arms around the present … the future of autism research.

Trying to boil the ocean. Attempting to figure it all out.

And I hear the ever-focused dads on the call. Peter Bell. Mark Blaxill. Pushing, Questioning. Thinking about their kids.

Working I know, for their Beloved.

Thank God for the dads.

I really love the way Jesse Mojica expressed it in today’s New York Daily News:

"Though my son has not said a word to me in more than seven years, he speaks volumes to my spirit.

Many people ask if I have any regrets since Adam's diagnosis and I respond to all by saying, 'Just one: That I did not have Adam, Miguel, and my wife, Ana, in my life sooner.'

I am a man who has been blessed countless times over by the love of these beautiful angels. Together, we will continue to grow as a family and advocate alongside our friends within the autism community as long as it takes."

Music to my ears Jesse. Music to my ears..

Autism Advocacy at the Federal Level: Let Them Hear Your Voice

What: The Interagency Autism Coordinating Committee

When: July 2008

Where: A Phone or Computer Near You

Why You Should Care: This committee decides where all the federal autism-related funding (you'll remember all the Combating Autism Act dollars we fought about/over/for) is spent.

Unfortunately, for some reason I'm not a member of the IACC. Odds are, if you're reading this, you're not either. The good news is that there are two opportunities for public participation in the next couple of weeks:

******

IACC Strategic Planning Workgroup Meeting

Date: July 8, 2008

Time: 10:00 a.m. to 1:00 p.m. EDT

Agenda: Review and comment on the draft IACC Strategic Plan for Autism Spectrum Disorder (ASD) Research

Place: Online conference call with web-based presentation. Audio of this workgroup meeting will be accessible to the public via a teleconference phone link, and web-based access to information will be displayed at the meeting via computer/projector.

Dial in number (888) 455-2920

PASSCODE: 3857872

Registration: Click here to register.

Contact Person: Azik Schwechter, Ph.D.
Interagency Autism Coordinating Committee
National Institute of Mental Health, NIH6001
Executive Boulevard, Room 8203a, MSC 9657
Rockville, MD 20852(301) 443-7613
schwechtera@mail.nih.gov

Please Note: The workgroup meeting will be open to the public through a conference call phone number and a web presentation tool on the Internet. Individuals who participate using these electronic services and need special assistance, such as captioning of the conference call or other reasonable accommodations, should submit a request at least 96 hours prior to the meeting.

Members of the public who participate using the conference call phone number will be able to listen to the meeting but will not be heard. There may be an opportunity for members of the public to submit written comments during the workgroup meeting through the web presentation tool. Submitted comments will be reviewed after the meeting.

******

Interagency Autism Coordinating Committee (IACC) Meeting

Date: July 15, 2008

Time: 9:00 a.m. to 4:00 p.m. (subject to change)

Agenda: Review strategic planning workgroup comments on draft strategic plan for autism spectrum disorder (ASD) research; discuss and approve draft strategic plan, summary of advances in ASD research, and process for implementation of strategic plan; report from Services Subcommittee; scientific presentation.

Place: Natcher Conference Center
NIH CampusRooms E1 and E245
Center Drive
Bethesda, MD

Registration: Click here to register.

Contact Person: Tanya Pryor
Interagency Autism Coordinating Committee
National Institute of Mental Health, NIH6001
Executive Boulevard, Room 6187, MSC 9669
Rockville, MD 20892-9669
Phone: 301-443-7153
Fax: 301-480-4415
pryort@mail.nih.gov

Any member of the public interested in presenting oral comments to the Committee should notify the Contact Person at least 10 days in advance of the meeting. Interested individuals and representatives of organizations should submit a letter of intent, a brief description of the organization represented, and a written copy of their oral presentation in advance of the meeting. Only one representative of an organization will be allowed to present oral comments and presentations will be limited to a maximum of five minutes. Both printed and electronic copies are requested for the record.

Any member of the public may file written comments with the Committee by forwarding their statement to the Contact Person. The statement should include the name, address, telephone number and when applicable, the business or professional affiliation of the interested person.

******

Please do what you can...

Autism: And This is What Makes America Great

Happy Independence Day!

Autism: The Downward Spiral of Down Time

My virtual friend Katharine from Mama's Alright wrote about fear this week and it couldn't have come at a time that was more apropos for yours truly.

First some confession:

I have a need for sameness.

I dislike disruption of my routine.

I don't do down time.

My shoulders tighten.

Dull-pain knots invade my abdominal cavity.

I fight with my husband.

I'm cranky with my kids.

Just not good.

But, as all you grownups know, the only thing that is constant in our lives is change.

God I hate that.

This week is one of those crazy weeks where Jack is home from school with no therapy to speak of. Amy has swim practice every day. The basement has standing water in it because of severe thunderstorms.

I've lost control of my wonderfully scheduled life. Where am I supposed to be when? How do I juggle the babies? I feel so guilty for not being everything they both need. When I'm driving and coordinating and signing permission slips, life feels so much more controllable. I'm do-ing.

But as Katherine says in her blog, fear stands for "fearing events that aren't real." Sometimes you have to just be.

So I hang with Jack. Yeah, he's stimming a bit too much, but it's not the end of the world. We're playing and laughing and potty training.

He's happy.

I score a babysitter for Jack and take Amy to swim practice. Yeah, I get soaked from a passing rain storm and my body is grimy from standing on the shore of the pond she's swimming in. When she's on a break I work my way through the crowd of swimmers to find her and give her a high-five. She asks if I would consider not hovering. "Stand over there, Mom..." she whispers, pointing to the lifeguard stand a football-field away.

Mission accomplished. She knows I care. A little too much in this case.

No commute. No schedule. (Except for the swimming thing.) Amy sleeps with Jack in his room every night. They laugh at each other and occasionally pull each other's hair. We hang out in our pajamas. Watch some Noggin. Eat too much.

Out of sorts.

It's awkward for me, but I feel so...

in-the-moment...

Fear is a friend that's misunderstood.

I know the heart of life is good...

And thank God, Monday is right around the corner.

Autism: America's Got David Millitello

Okay, I admit it...

This 42 year-old, hormonal, overly-sentimental autism mama completely lost it when she heard David sing. I sniffed and snorted all over my Life is Good t-shirt...





Beautiful boy, thanks for sharing your talent...

Life really is so good...

The History of Autism (My Amended Version)

The Washington Post reports some key dates in autism history today.

1943: Based on a study of 11 socially withdrawn children, child psychiatrist Leo Kanner identifies autism as "lack of affective contact, fascination with objects, desire for sameness and non-communicative language before 30 months of age."

1944: German scientist Hans Asperger describes a "milder" form of autism, known today as Asperger's syndrome. Over time, experts will place Asperger's and other autism-related conditions on a spectrum ranging from mild to severe dysfunction.

1965: U.S. psychologist Bernard Rimland establishes the Autism Society of America, one of the first advocacy groups for parents of children with autism.

1967: Autism is classified under schizophrenia in the International Statistical Classification of Diseases and Related Health Problems.

1971: Eminent psychologist Bruno Bettelheim promotes the "refrigerator mother" theory, which holds that "cold," unurturing parents, especially moms, are to blame for autism.

1980: Autism is categorized as a developmental disorder separate from schizophrenia in the Diagnostic and Statistical Manual of Mental Disorders (DSM-III), the reference book used by health-care professionals to diagnose mental health disorders.

1994: Asperger's syndrome is officially added to the DSM-IV as a progressive developmental disorder. Two nonprofit groups, the National Alliance for Autism Research and Cure Autism Now, are founded to stimulate autism research and raise awareness about the disorder.

2000: In response to broad government concerns, vaccine makers remove thimerosal, a mercury-based preservative, from all routinely given childhood vaccines. Public fears grow that exposure to the preservative may be tied to autism. The National Institutes of Health estimates autism affects 1 in 500 children.

2001: The NIH estimates autism affects 1 in 250 children.

2004: The Institute of Medicine, which advises the government on scientific matters, finds no credible evidence of a link between thimerosal and autism . . . or between the measles-mumps-rubella vaccine and autism.

2007: The Centers for Disease Control and Prevention reports autism affects 1 in 150 children. Medical experts say the changed number reflects better detection, broader diagnostic criteria and increased public awareness -- not a spike in the disease.

I would add another:

June 30, 2008: Jack Ursitti, a four year-old diagnosed with severe autism, giggles at his distorted reflection in the doorknob, looks up at his mom and says, “Happy…..”