Romancing Eli Stone

If you keep up with autism related news, no doubt you’ve heard the buzz about ABC’s new drama "Eli Stone." According to the NY Times the "Stone" premiere will

"...step into a subject that is the source of heated debate among some parents — the relationship between autism and childhood vaccines — and seemingly coming down on the side that has been all but dismissed by prominent scientific organizations."

The blogosphere is buzzing and the various autism camps are reacting as expected. Those who believe strongly in the link are applauding the episode as powerful television. Those who don’t (the American Academy of Pediatrics for starters) are asking that the episode not run due to potential public health implications.

I fully expect the episode to run, even though the AAP sent a letter to ABC asking them to pull it. There’s a writers’ strike going on right now, so fresh television is a hot commodity.

Will I be watching?

Not likely.

As you already know, I am the devoted mom of a little boy who struggles with the challenges of autism every day. I have no idea what caused it. Vaccines? Cheetohs? Advanced maternal age? My cell phone? The power lines I drove under?

I just don’t know.

No one else knows for sure either.

There are many interesting theories out there. And even though "Eli Stone" thinks otherwise, the jury is still out.

So when I see this type of media on the horizon, honestly I cringe a bit. Unfortunately, I've been there/done that. I would rather not have the Playboy Playmate of the Year from 1994 quoted to me by well-meaning friends and family. I would rather not hear how some fictional mother defeated evil pharma in a cheesy courtroom drama. On the flip side, I also don’t want to hear how my son’s wiring is just different and I should just accept him as he is. If only I wasn’t such a Type-A, Americanized mom, I wouldn’t feel the need to selfishly push for a cure.

Enough of the don’ts you say …

What do I want to hear?

I want to hear how science that has been peer-reviewed and replicated has discovered what autism really is. I would like to know what causes my son’s communication system to be paralyzed, his skin to be pale and his heart to be damaged.

I want to hear that children and adults with autism are able to access treatment and education, no matter what their bank balance or their zip code is.

I want to hear corporations stepping up and saying that they will comply with the recommendations of the AAP, and provide insurance coverage for evidence-based autism treatments.

Spare me the B.S. (bad science) upon B.S. (bad scripts) upon B.S. (blogosphere squabbling.)

There’s no such thing as a shortcut to anyplace worth going. Unfortunately, that sort of script just isn’t quite sexy enough for Hollywood.

Hmmm…

Then again, maybe I could pitch an autism reality show …

Now that would make for some captivating television.

******

Those are simply this mom's thoughts. What do you think? Will you watch?

Don't forget to check out my blog on Parents.com...

She Blinded Me With Science

When my 15 year old son was diagnosed 12 years ago, most people told us "autism isn't treatable." Times have changed.
~ Peter Bell

One of the coolest things about living in the Boston area is the opportunity to have access to some of the most renowned experts in the field of autism. So when the e-mail landed in my inbox promoting the parent lecture series sponsored by the pioneering Ladders Clinic, I immediately started making childcare arrangements.

I was going.

My new friends, the locals, laugh at my excitement. I can’t help myself. I’m still in the ga-ga stage. To think that I can drive five miles and walk into a packed auditorium to hear the latest and greatest news in autism research is tantamount to my daughter scoring Hannah Montana tickets. Last week I attended the first lecture in the 2008 series. Speaking was Dr. Margaret Bauman, neurologist extraordinaire, founder of the MGH Ladders Clinic as well as co-founder of the Autism Treatment Network.

I should clarify that historically, I’ve hardly been the type of person that thought too terribly much about science. In school, I skated by, memorizing enough in my required science classes to make the necessary A, then immediately executed the brain dump as I exited the classroom at the end of the semester. English, history, music, football players … those were the subjects I truly enjoyed. Even now on occasion Andy attempts to engage me in a conversation about global warming or some other scientific subject. I have to focus, focus, focus to prevent my eyes from rolling back into my head, which is generally filled with the never-ending to-do’s of piano lessons, girl scouts, therapy sessions, basketball practice et al.

So I was both excited and admittedly a little proud of myself, lightweight suburban mom, as I settled into the back row at Dr. B.’s presentation. After all, I could be home watching American Idol. I was a little tired and hadn't had time for dinner, so I knew I might have to fight off the nods by the time she got to slide 57, but I sat up straight, pen in hand, ready to take notes.

The nods never hit.

Dr. B was engaging, honest, warm and hopeful. She discussed NIH grant review and the goings-on at the newly formed IACC. She discussed the latest genetic news, the most interesting to me being the discovery of the gene variant associated with the MET gene. (The majority of individuals with autism that have this gene variant also suffer from gastrointestinal issues. The majority of individuals with autism that don’t have this particular gene variant don’t have G.I. issues.)

She also described autism as a multi-organ disorder not limited to the brain. Looking at my iridescently pale little guy, with the hole in his heart and the occasional bout of asthma, that statement made perfect sense to me. My friends who have kids on the spectrum suffering with chronic G.I. issues I’m confident would concur.

Not only does Dr. B spend her time lecturing about the multi-organ nature of autism, she is actually doing something about it. Back when I was still in high school, she was reaching out to children with various neurological conditions, eventually starting the Ladders clinic. The success of Ladders led to the founding of the Autism Treatment Network, which recently announced a threefold expansion from five sites to fifteen. Hopefully they will be coming to a city near you in the very near future.

I stood in line to meet Dr. B after the presentation, wide awake and thankful. As the mom of a beautiful little boy with issues I can’t begin to figure out, I wanted to meet one of the good guys.

The researcher.

The clincian.

The pioneer.

I told her about Jack and thanked her for her hard work.

She, of course, asked me how Jack is doing.

I smiled at her and replied with a renewed sense of optimism,

“Great. Just great…”

******

Please stop by and visit my blog on Parents.com ...

Campaign 2008

One of my favorite bloggers, Michael Goldberg has the following to say on Autism Bulletin today:

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Which Autism Parent Blogs Do You Like?

When I told a colleague of mine that there are many parents of children with autism spectrum disorders who discuss their experiences in blog posts, she asked me to compile a list.

I have some in mind, but am looking for more. So I am asking Autism Bulletin readers for your suggestions. Please answer this question:

Which blogs by parents who describe their experiences raising children with autism do you find helpful? Why?

Please also share the website address of any blogs you choose. You can post your suggestions by adding a comment to the end of this post, or you can send me an e-mail message at michaelsgoldberg AT yahoo DOT com. I will share the list I compile in a later post.

******

I certainly have some favorites I plan on e-mailing Michael. Hopefully you’ll do the same.

By the way, the website address for Autismville is:

http://parents.com/autismville or http://autismville.blogspot.com/

whichever one works best for you...


Err....you know... just in case....ahem...for some reason... you were wondering ...

:)

A Message From Claudia's Mom

Claudia's mom has a story to tell.

It's a story I've lived. It's a story many of you, my readers have lived.

It's a story worthy of your time.

Please.

Watch.

To find out more about the lack of insurance coverage for basic autism treatment, click here.

On another note, you might also want to watch ABC's Nightline tonight.

According to the Autism Speaks web site:

TUNE-IN: ABC's Nightline Reports on Girls with Autism ABC News' "Nightline" will air a report on Wednesday, January 23, on girls with autism. According to ABC, Correspondent John Donvan and producer Caren Zucker's report will explore the belief of several researchers and psychologists they spoke with that there are many girls with autism who are either going undiagnosed or being misdiagnosed with other disorders. The report "takes an in-depth look at how girls and boys are brought up culturally, and how these differences could contribute to a misdiagnosis in girls, resulting in the harsh reality that we just don't know how many cases of girls with autism really exist."

Nightline's report airs on ABC News' "World News with Charles Gibson" at 6:30pm (ET) and then on "Nightline," Wednesday, January 23, at 11:35pm (ET/PT).

I'm definitely setting my TiVo.

Just Give Me The Night

We'll continue to monitor the situation very closely.
~George W. Bush

It’s a school holiday for both kiddos, so I’m doing what any good mom would do: sitting on the couch in the family room, laptop balanced on my flannel-pajama-clad knees, watching The Daily Show. Occasionally I just can’t help but laugh out loud. Jon Stewart absolutely kills me. Hearing the laughter, Jack wanders in and giggles with me for a moment, then wanders back out.

We’re going to visit Superdad’s office in a bit … have some lunch in the employee cafeteria.

Good times.

With the exception of Happy Jack, we’re all a little weary this morning. The reason being: Jack had a big-time party in his room last night starting at about 2:30.

It should be noted that we live in a fifty year-old New England colonial with hardwood floors throughout. Jack loves the sensation of jumping up and down on those hardwood floors in his footy pajamas. Although, for the most part, he’s a good sleeper, Jack goes through unexplained periods of extreme jumping and laughing in the wee small hours of the morning. These periods generally last a week or so, and then sweet, uninterrupted sleep returns.

We’ve attempted to handle the disruption in different ways, but have never really found a way to get him to just lie down and go to sleep. Generally what happens is one of us checks in on him to make sure he’s safe and well, and then we all attempt to go back to sleep while he parties on in his room.

Last night he partied for a good hour. Maybe two.

This drives Superdad (the lightest sleeper in the universe) absolutely nuts. Making bad matters worse, even though Jack is four, I still insist on having the baby monitor right by the bed, broadcasting every single bang, bump and mutter.

This morning, as he buttoned his shirt, preparing to head to the office, Superdad casually mentioned how we really don’t need the monitor any more, especially since the party room is located directly above ours.

He paused.

I cringed.

He cringed, knowing what my response would be.

I love hearing every breath. I worry for his safety. I don’t mind hearing him mutter and stomp in the middle of the night.

What if he throws up? I need to hear that.

What if he hurts himself? I need to hear that.

What if he actually calls out for his mom?

Still waiting for that one.

I definitely need to hear that.

Superdad loves me. He shrugged in resignation.

Maybe some fancy noise-canceling headphones would do the trick? Does Bose have a device for sleep-deprived parents?

For now, the plan is to just continue to monitor the situation.

Yawn….

******

Visited Autismville at Parents.com lately?

For Katie McCarron

I ask all parents and especially those of children with disabilities to ALWAYS love your children and be proud of them. Cherish every moment you have with them. Love, patience and tender efforts are the best therapies.

~ Paul McCarron (Katie's Dad)


As part of our California trip over the holiday break, we toured the presidential library of the late President Ronald Reagan. Reagan was president during much of my adolescence, and touring the library felt like a genuine glimpse back not only into his life, but mine as well.

Set in beautiful Simi Valley, the library is a must-see for any patriot, no matter your political affiliation. It would be difficult to walk away from this picturesque setting without feeling some sort of inspiration to push the limits of one’s potential in this topsy-turvy existence we refer to as life.

Reagan lived one that was amazingly full, fascinating and imperfect.

There was only one moment during the tour when I was moved to tears. It was the moment I laid eyes on President Reagan’s grave. Nothing morbid, mind you. It was the simple, beautiful message engraved in stone that got me. Words spoken by this fascinating, imperfect man:

I know in my heart that man is good
That what is right will always eventually triumph
And there is purpose and worth to each and every life

Yesterday when I saw the news report regarding the verdict in the trial of Karen McCarron, I wept again. If you haven’t been following this tragic story, Dr. McCarron murdered her beautiful three year-old daughter Katie. (To read more extensive coverage, go to http://www.autismvox.com/.) Yes, it’s true that Katie had autism. And according to various news reports, Dr. McCarron wanted autism “out of her life.”

Yesterday, a jury of her peers found her guilty of first degree murder.

I do not know this family. I don’t know what Dr. McCarron’s mental status was when she committed this act of unspeakable cruelty.

What I know for certain is that there was purpose and worth to Katie’s life. She had incredible potential. She deserved to laugh, play, learn and love.

I will remember her always.

Peace and love to her family.

All I Ever Needed To Know About Potty Training I Learned From This Blog

It’s all up to you

But whatever you do

Take it easy on me

~ Little River Band

With a complete day of potty training, ahem, under our belts, I thought I would give you a status report.

Presently I am sitting on the couch in my family room, attempting to type. Amy is watching a retro episode of The Suite Life of Zack and Cody. (Remember back in the day when their hair was short and Ashley Tisdale’s original nose was intact?)

Jack is playing (stimming) with his Peek-A-Blocks Wagon, while intermittently looking at himself in the mirror and laughing.

And yes…

Gulp…

With head hung low, I must confess...

He’s wearing a pull-up.

There. I said it.

I know, I know, I know…

I’m a quitter.

Not a stick-with-er.

As Amy, in her second-grade lingo would say, “L-4-L”. (Translation: Loser for Life.)

All I can do at this point is throw myself on the mercy of the mommy court.

It's not all bad. I actually learned some extremely helpful things from you, my fellow parents and loyal readers.

In summary:

Jack should definitely wear his Red Sox t-shirt the next time around. With apologies to my friends in Wrigleyville, it is my sincere belief that the whole Cubs jinx thing really affected his performance. Something about a billy goat or something?

Reinforcers are key. I heard about everything from posters with Thomas stickers to Oreos to videos in the bathroom. Anything to motivate and inspire.

Many of you mentioned potty guru Richard M. Foxx who co-wrote the book Toilet Training in Less Than One Day. Definitely worthy of a visit to Amazon.com.

Visuals truly help. A couple of cool web sites were mentioned: To Think is to Create mentioned a wonderful PECS tool which can be found here. It’s definitely worth a look.

Leila shared this thought-provoking advice:

“My son was easy to train for pee, but #2 took a couple of weeks longer. He'd poop in the underwear and then take it off and throw the "product" in the toilet. Then I drew a picture where he could see the poop coming out of the butt and into the toilet... Sounds gross, but that's what made the difference!”

I chuckle in amusement now, but I have a sneaking suspicion I may be drawing similar pictures in the very near future.

If I do, I prrrromise video.

I end with what I consider very, very good news.

I met with Jack’s team at school on Tuesday and we created the following potty-training plan:

Jack’s teachers will work with him intensively at school and train him there.

Jack’s teachers will then come to our house and work on training him here.

We’ll take over from there.

Now that, my dear readers, is a plan I can truly (pardon yet another pun) get behind.

******

Make sure and visit my blog at Parents.com!

Autism: Day One of Potty Training

Make sure you scroll down to see all the captivating video!

Warming up for the big day...



A little while later ...



Hitting the wall...



Will Jack pee in the potty? Will Judith collapse into the pit of despair? Check back tomorrow for an update!

Jesus Take The Wheel

I went for a run bright and early this morning. The sun was shining and the weather forecast was dismal (the weather-dude is forecasting a foot of snow early Monday morning), so I decided to get outside before ice overtook my running route yet again.

One thing I love about running is the beautiful, head-clearing effect it has on me. It’s my Prozac. As I shuffled along , my brain shuffled through the random thoughts of the day.

Gosh, I really love the outdoor remodel that 49 just finished, I thought to myself. Must have cost a pretty penny. The house doesn’t even look the same. The paint color is cool too. Wonder if I could talk Andy into doing something other than white next time.

I also love the new tunes I loaded on my iPod. I hit repeat on the new John Mayer song a couple of times. Made the hills more bearable, hearing John's reassuring voice.

Smack, smack, smack my Sauconies echoed on the pavement.

Can’t believe another foot of snow is on the way. What in the heck can I do tomorrow to keep Jack properly “engaged” I worried. No doubt his school will be closed, which means an eternal day that inevitably will result in an ugly case of cabin fever.

Not sure if you’ll recall our last snow day, but we spent most of it doing this:

Probably not the most therapeutically productive of days.

Sigh…

What to do.

As I labored up another hill and the long-awaited endorphins kicked in, the light bulb miraculously went off.

Ding! Ding! Ding!

Of course.

Work on potty training!

Home all day. Nothing else to do.

He’s almost four and half.

He peed in the potty at school three times this last week, once upon his request.

So, ahem…

Be it hereby resolved that tomorrow I will sit Jack’s booty on the toilet every fifteen minutes, whether he needs to go or not.

I will let him drink all the vitamin water he wants.

I might even be brave and put some real underwear on him so he can “feel” the result of not sitting on the potty.

I will sing songs, give him Skittles, do cartwheels and clean up icky messes.

And to ensure that I actually follow through with said resolution, I am putting it in writing for all of you to read.

Gulp…

Stay tuned….

******

Please visit my blog at Parents.com!

Making Room for Autism

Today's Boston Globe ran a story on Jack's school, Nashoba Learning Group, and how difficult it can be to actually get in to such a quality program. This situation is multiplied thousands of times over across the country and I know many of my readers have spent an eternity on wait lists.

The wait lists aren't just educational in nature either. When we lived in Texas, there was an incredibly long wait-list just to see a developmental pediatrician. The wait-list to receive services through early intervention, (which is federally mandated by the Individuals With Disabilities Act) was hopeless. In fact, Jack never received speech therapy from EI more than once a month back in his early intervention days. All the while, according to their own assessments, he was severely affected by autism. They simply didn't have enough speech therapists to cover the 1 in every 150 kids being diagnosed with autism.

Wait is my least favorite four-letter word. And it's not just applicable to early intervention. People of all ages are languishing on wait lists.

I hope you'll take time to read the article. I'm not sure how things are going to change, but to this determined autism mom, it's not a matter of if, but when.

******

Don't forget to visit my blog on Parents.com.

Part of That World

I wanna be where the people are
I wanna see, wanna see them dancin'

~The Little Mermaid


Superdad Andy and I had a conversation a few weeks ago about our upcoming holiday plans.

Superdad has a real job at an office that he drives to every day, where he actually rubs shoulders with other human beings who are not consumed by the day-to-day travails of autism. They read The Wall Street Journal and talk about things like stock price performance and baseball. They work on financial statements and SEC filings. It’s mysterious, cubicle-filled world that I, after dipping my toe in the waters of domestic engineering, have long since forgotten.

One of Superdad’s single, super-wonderful co-workers actually owns what she calls a “party condo” in beautiful Palm Springs. (Note that said co-worker’s home residence was featured on HGTV once. The woman not only has a kind heart, but also a talent for fine living.) For the second year in a row, she graciously invited us to the New Year’s Eve soirée at her desert getaway.

Last year Superdad and I traveled to the event sans children. One of our wonderful in-home therapists took care of the kids back in Texas while we snuck away. The trip was fantastic. However, it was also one of those escapes where after a couple of days, I found myself at a loss for what to do with myself. There’s only so much lounging, reading, sight-seeing I can stomach before the yearning to be needed hits. It’s just my personality. I don’t sit down much, unless I’m planted behind the computer.

This year when the invitation came in the mail, I set it aside with a sigh and assumed there was no way we could go two years in a row. Since we’d moved, we really didn’t have anyone to stay with the kids while we wandered off. Maybe we would score an invitation next year.

When Superdad started making plans, I put the brakes on, pronto. After all, one of us has to be the practical one. (Admittedly, most of the time it's him.) Superdad is a rather determined person. It’s one of the things I adore about him. It’s also one of the things that drive me nuts. (If you’ve been married for long, you know exactly what I’m talking about.)

So we played that wonderful game of compromise that married couples do. In the end we decided to cash in the frequent flier miles and take the whole darned family to California. We would spend a couple of days at Disneyland, and then meander over to Palm Springs. An ambitious undertaking to say the least, but we decided to take a walk on the wild side, close our eyes and jump.

And I’m so glad we did!

If you haven't already picked up on this fact, I’m a planner/worrier/control freak. After making the big decision to actually go on our first real family vacation since Jack's diagnosis, the first thing I did was check with one of Jack’s wonderful therapists to see if she might want to tag along. Ally, who has worked with Jack for almost two years and who feels like part of the family, enthusiastically agreed.

Her presence proved to be just the added element of support we needed as we dealt with transitioning Jack from place to place. Bonus: She served as a built-in babysitter when Andy and I attended the frou-frou party. We stayed out late into the night without a worry.

The second thing I did was to consult the experts. My friend Joey Barton, who writes his own blog on Autism Spot as well as at Balancing Life and Autism, has worked in the travel industry for years. Bonus: his lovely wife has too. Since they have a son on the spectrum and love to travel, I knew they were the ones to ask for advice. (I’m anxiously awaiting the book they’re going to write about traveling with a special needs kid. Hint. Hint.)

Joey was quick to let me know that when you take a kid with autism to Disney, you can get what's known as a disability pass. This pass allows you to forego the long lines, which for a child on the spectrum, is HUGE. To sum it up for you:

THERE IS ABSOLUTELY NO WAY WE COULD EVER GO TO DISNEY IF WE DIDN'T HAVE THIS OPTION.

We arrived at Disneyland the day after Christmas and immediately went to Guest Services. I plopped Jack up on the counter, the kind employee quickly gave Jack the once-over and handed us our “magic pass.” Easy as that. We laughed, wandered, and rode and re-rode various rides.

At one point, Superdad leaned over and mentioned that he actually felt a smidgeon of guilt walking past all of the other park-attendees who were languishing in the long, holiday lines.

"Not me!" I piped in. "How many WAITing rooms and WAIT lists have we endured?" I ranted. "How many hours have I WAITed in traffic, driving from one appointment to the next. For once, just once, we don't have to WAIT!"

"Calm down" Superdad rhetorted. "I only said just a smidgeon...Geez!"

At the end of day two as we exited the park for the final time, Amy turned to Jack and said in her happy but exhausted voice,

“Jack, I just want to thank you for having autism.”

Andy and I cringed and grinned at each other simultaneously as the melodic voice of Ariel drifted into my weary head.

Betcha on land, they understand that they don't reprimand their daughters.

No reprimand required. Jack smiled to himself as we headed for the car.

******

Don't forget to visit my blog at Parents.com!

I Can't Make You Love Me

“I love you Jack” Amy said in her matter-of-fact, big-sister tone.

“I wish you loved me too.”

The kids were in the bathtub, washing off layers of Saturday dirt, while I scrounged around in next room for a pink towel. Jack needed blue. Amy needed pink. That’s the way we always do it.

Of course my eavesdropping stopped me dead in my tracks. She had said it so sincerely. She had no idea I was listening. It made me ... sad. I wish she didn't have to wonder. I wish her childhood could be "normal."

My initial reaction was to shout “Of course he loves you Amy…” This time, for some reason I hesitated.

Amy talks to Jack frequently.

Amy talks for Jack frequently.

Realistically speaking, the duration of their relationship will far outlast mine with either of them. And so I know I have to let them work through these things on their own sometimes.

I do think Jack loves Amy. And I think it is quite-often in a very typical little-brother sort of way. Occasionally I’ll catch him watching her, sometimes even laughing. I have to unclench his fist from her ponytail on a weekly basis. Pretty typical sibling business so I hear.

But he doesn’t appear to “worship” her like little brothers are known to do. He doesn’t ask her questions. He doesn’t play with her. He doesn’t tease her. Much of the time he doesn’t even acknowledge her.

She’s been there for him though. She was there when we learned he was a boy via ultrasound. She was there the day he was born. She insisted on helping with his first bath.

When I allow it, she likes to sleep on the floor beside his bed at night. And fortunately, she hasn’t reached the point yet where he embarrasses her. I know it’s inevitable, but hey, that’s sort of typical too isn’t it? This potential for embarrassment is just an extremely exaggerated sort.

Amy Lennard Goehner wrote quite poignantly about this in her Time.com article Autistic Kids: The Sibling Problem. In it she says:

The typically developing siblings of autistic children are, in fact, the furthest thing from typical. Often, they are wiser and more mature than their age would suggest. And they have to be, given the myriad challenges they face: parental responsibility; a feeling of isolation from the rest of their family; confusion, fear, anger and embarrassment about their autistic sibling. And on top of all of it, guilt for having these feelings.

As their parents, there's a lot we can do to help. For starters, we can educate them early on, by explaining their sibling's disorder — a conversation that should be ongoing. Dr. Raun Melmed, co-founder and medical director of the Southwest Autism Research and Resource Center in Phoenix, suggests including non-autistic children in visits to the doctor or other autism professionals. Early intervention doesn't have to be "thought of as being geared only to the involved child," Melmed says. In his office, Melmed reassures siblings that "other brothers and sisters have negative and confusing thoughts about their [autistic] siblings. That is common." He also instructs parents to reaffirm that message at home. "Parents need only acknowledge to their healthy children that they know what they are going through and that negative feelings are normal," he says.

Like the dirty water swirling its way down the gurgling drain, I let the bathtub “I wish you loved me” moment go.

But I’ll talk about it with Amy when the time is right.

And Jack will tell her in his own way when the time is right.

I’m not sure how I know.

I just do.

******

Don't forget to visit my blog at Parents.com.

Autism: The Funding

I needed a nice dose of hope today, and fortunately, I got one.

According to Autism Speaks, President Bush has signed the the bill authorizing funding of the Combating Autism Act. The following news release can be found on their web site:

The Fiscal 2008 Omnibus Appropriations Act contains appropriations for the Combating Autism Act at the levels stipulated in the CAA, less an across the board cut of 1.747%. The cut is being administered to all programs and activities within the Labor, Health and Human Services section of the omnibus bill.

The bill contains the following appropriations:

Autism services, diagnosis and treatment at the Health Resources and Services Administration: $36,354,000, a $16.354 million increase over Fiscal 2007 ($37m was the level authorized by Combating Autism Act).

Autism surveillance and awareness at the Centers for Disease Control and Prevention: $16.212 million, a $1.2m increase over Fiscal 2007 ($16.5m was the level authorized by the Combating Autism Act).

An estimated $108.5 million for NIH-funded autism research.

Implementation of the Interagency Autism Coordinating Committee (IACC): $1 million within the budget of the National Institute of Mental Health is earmarked for IACC implementation.

In total, Autism Speaks expects a 2008 fiscal appropriation of approximately $162 million, as authorized by the Combating Autism Act.

What a fantastic way to bring in the new year. A huge high-five for the blood, sweat and tears of so many dedicated parents and advocates that brought this to fruition. Another for all those busy fingers dialing phones and typing e-mails.

Patience is a virtue. Persistence gets the job done...

To Whom It May Concern

When I was younger, so much younger than today,I never needed anybody's help in any way.But now these days are gone, I'm not so self assured,Now I find I've changed my mind and opened up the doors.
~John and Paul

Wow. Talk about the best of intentions. The quick posts I promised while in California just never materialized. Check back tomorrow for a blog about our Californication. (Here’s a sneak peek at some pics.) And to all who I owe e-mail responses to, please accept my sincere apologies. I am catching up. Promise. I care. Really, I do.

But today a deadline loometh. (Hmmm … not sure “loometh” is actually a word. Guess it is now…)

As I mentioned in my previous Parents.com post, Let Them Hear Your Voice, January 4th is the deadline to submit your comments to the National Institutes of Mental Health’s Interagency Autism Coordinating Committee (talk about a mouthful.) Click here to read the particular information they are seeking from ASD “stakeholders.” If you’re reading this blog, I hereby pronounce that you automatically qualify.

I plan on clicking and providing appropriate input regarding their specific questions. But, judge me if you will, I just can’t resist the maternal urge to lay my emotions out there in a slightly melodramatic, but ever-so-sincere first draft.

So, here goes nothing….

To Whom It May Concern (George Bush, Members of the IACC, Tom Insel, Santa, Jesus, Hillary Clinton, Peter Bell, John McCain, Mom, Jenny McCarthy, Bob Wright, et al):

I am writing to you as an ASD stakeholder. Please know how much I appreciate the opportunity to provide input to you as you seek direction for the NIMH’s autism-related efforts. It’s really cool and I hope you’re sincere about it.

The stakes are incredibly high; heck, the stake in my heart is being painfully twisted on a daily basis … I could go on and on with the pathetic play on words, but I’ll spare you.

Ironically for me personally, it’s all about words. My son Jack could really use some. You see, just this week two years ago, he started an intensive early intervention program. For two years he’s put in 30-40 hour weeks. He’s done the PRT. He’s done the OT. He’s done the ST. He’s taken supplements. Consulted a DAN doctor. Dealt with dietary restrictions. Jumped on the trampoline. Played on the swingset. Sat through evaluation after evaluation. Ridden in the car for hours and hours, staring out of the window or at the back of his mom's head, whichever proved most interesting at the moment.

Some of his peers on the spectrum started off in a very similar place. They too couldn’t communicate. They too dealt with the incredible urge to engage in self-stimulatory behavior. They too put in the hours and hard work.

The glaring difference: They got better. In a major way. I personally know a couple of kids who are now getting ready for kindergarten, indistinguishable from their peers. No more autism diagnosis. For them, the intensive, early intervention worked.

So far for Jack, it hasn’t.

In our family, we willingly accept that in Jack’s case there is no such thing as a shortcut to any place worth going. We are determined to help him reach his full potential. To help him find a way to let us know what is going on in that beautiful mind of his.

What we wouldn’t give for some words.

Words.

So, as you read submission after submission of the various stakeholders, perusing word after word after ironic word, please…

Please…

Keep this beautiful little boy,

And all the other non-verbal, self-stimulatory, ultra-lovable, tough-case kids in the back of your mind…

And close to your heart.

They need you to find the truth. To figure out what autism really is.

They need you to be diligent.

They need you to be smart. Smart enough to filter the buzz from fringe groups spouting inapplicable rhetoric.

They deserve your best.

I, the aforementioned stakeholder, close with two final, heartfelt words …

Please

help.

Sincerely,

Judith Ursitti

Autism Mom

Note: You can also read and comment on this at my blog on Parents.com.