Monday, March 31, 2008
So I’m finishing up mile 17 of my grueling 18 mile training run late Sunday afternoon. The Boston Marathon is looming. Just three short weeks to prepare for the 26.2 mile challenge.
I feel queasy.
My legs ache.
Dear God in heaven, I’m not ready…
And then, somewhere in the universe, my guardian angel waves a magic wand.
Bum, bum, bum
My iPod vibrates.
Bum, bum, bum
Bum, bum, bum
Bum, bum, BBUUUUMM
Risin' up, back on the street
Did my time, took my chances
My eyes crinkle with a smile of recognition.
Went the distance, now I'm back on my feet
Just a man and his will to survive
My pace quickens as I crank up the volume.
It's the eye of the tiger, it's the cream of the fight
Risin' up to the challenge of our rival
And the last known survivor stalks his prey in the night
And he's watchin' us all in the eye of the tiger
Nothing like a cheesy song from the 80's to grab your attention. Adrenalin fills my tired body as I remember why I’m running.
I’m running for my boy. My beautiful boy. He has killer blue eyes. He has the most contagious belly-laugh you’ve ever heard. He has one dimple that you can’t help but kiss over and over and over.
He also has autism.
Really, really bad.
He can’t speak. He can’t gesture. He can't type. He can’t communicate. He needs an almost indescribable amount of support.
He struggles. Every day, he struggles.
But he’s a tough, tough kid. He’s not a quitter. He continually works to connect. He has a beautiful mind. He is determined to share it.
I know. I see it in those beautiful blue eyes. And I’m so proud of him.
He's watching us all with the eye of the tiger.
For him, I will never, ever in a million years quit. I’ll write, I’ll run, I’ll search and research.
I might not catch a shower. My laundry may pile up. So will my voice mails and e-mails.
But when I close my eyes at the end of the day, I know I’ll have done all that I could.
I’m not unique by any stretch. In fact, I recognize that glimmer, the same eye of the tiger, frequently when talking to parents about their kids with autism.
So many passions.
Risin' up, straight to the top
Have the guts, got the glory
Some are passionate advocates for better legislation.
Some are fighting hard for greater awareness and understanding.
Some are fighting for basic services. The kind that should never be contingent on your bank balance or your zip code.
Some are fighting to figure out what autism is and what can be done to effectively treat it.
Some are fighting for a cure.
Some are fighting for basic insurance coverage.
Unfortunately, some are even fighting with each other.
All are fighting for their kids.
Went the distance, now I'm not gonna stop
Just a man and his will to survive
I turn into my driveway and walk to the door. Jack’s blue eyes peek out of the window. He’s waiting for me.
Arms out, he smiles.
Discomfort dissipates as I kiss that irresistible dimple.
Thursday, March 27, 2008
I must concede that the following news from CNN is probably even more exciting. (Who knows, maybe they'll provide live coverage of Jack's progress....)
Seriously, awareness brings understanding. Understanding fosters change. Thanks CNN for providing extensive coverage to an issue that in some way or other affects us all. These are exciting times indeed.
CNN Announces Global Coverage for First World Autism Awareness Day Multiplatform Effort Will Report on Science, Intervention and Resources for Parents on Wednesday, April 2
CNN will use its unparalleled newsgathering resources to report on the global impact and latest science of the developmental syndrome of autism for the first “World Autism Awareness Day.” Online as well as on CNN/U.S., CNN International, CNN en Español and Headline News, CNN will report on medical insights, information on treatments and intervention, and details about services available for those living with autism for the inaugural international awareness day on Wednesday, April 2.
On CNN/U.S., chief medical correspondent Dr. Sanjay Gupta will report on a range of issues related to autism spectrum disorder beginning on CNN’s American Morning at 6 a.m. through Anderson Cooper 360°.
Worldwide, it is estimated that as many as 35 million people have autism and face considerable challenges and often discrimination. In November 2007, the United Nations declared that April 2 would be an annual day to “encourage Member States to take measures to raise awareness about children with autism throughout society.”
“Bringing awareness and information to viewers and online users globally on topics of urgency and importance, like autism, is exactly what CNN does best,” said Jon Klein, president of CNN/U.S. “And Sanjay Gupta as our daylong guide for our reporting on this issue is a real differentiator for CNN. It will give depth to our reporting that no other network can offer.”
In the United States, the Centers for Disease Control and Prevention estimated in 2007 that as many as 1 in 150 8-year-old children in multiple areas of the United States had an autism spectrum disorder. Parents must often navigate their own paths to find helpful therapies and finance expensive education and other services independently.
In anticipation of World Autism Awareness Day, CNN.com will offer expanded coverage of this mysterious neurological disorder. Viewers will be able to access news and information including the latest medical theories and research about autism as well as the stories of people who live every day with the condition. Through multimedia and interactive elements, as well as traditional stories and videos, viewers will be invited to expand their knowledge and understanding of autism.
Viewers and users are encouraged to share their firsthand accounts of life with autism through video, photo, audio or text submissions to http://www.ireport.com/, CNN’s recently launched user-generated community Web site. Autism-related iReports are available at www.iReport.com/tags/autism; and iReport.com contributors also may gain recognition by having the material they submit to the site – once vetted and approved for use – appear on a CNN network or CNN.com.
On the weekend preceding World Autism Awareness Day, Saturday, March 29, and Sunday, March 30, chief medical correspondent Dr. Sanjay Gupta will devote the full broadcast of House Call with Dr. Sanjay Gupta to explain the latest medical thinking regarding early signs of autism. While most children are diagnosed with autism at about age two, studies suggest that earlier diagnoses may offer opportunities for critical behavioral interventions. Gupta will explain warnings signs that may be observable as early as 6 to 12 months of age, when early interventions may improve developmental outcomes. House Call with Dr. Sanjay Gupta airs Saturdays and Sundays at 8:30 a.m. Gupta’s investigation into issues related to insurance coverage and educational therapies for families living with autism will be featured on CNN Radio for affiliates. On CNN.com, the “Paging Dr. Gupta Blog” and “Paging Dr. Gupta” podcast will also feature helpful information for families on autism.
Also on Saturday, March 29, personal finance editor Gerri Willis will offer advice for parents on coping with the tremendous costs of autism for Open House. Open House airs Saturdays at 9:30 a.m.
On Monday, March 31, American Morning will introduce CNN viewers to triplets – each with autism at varying severity – born to Lynn and Randy Gaston in Ellicott City, Md. Additional reports will feature adults living with autism and distinguish medical myths from realities associated with a range of therapies and treatments. CNN’s American Morning airs weekdays on CNN/U.S. from 6 a.m. to 9 a.m.
Preliminary coverage plans for World Autism Awareness Day on Wednesday, April 2, include:
On CNN en Español, En Familia, a 30 minute program that serves as a guide to parents, and Consulta Médica, a 30-minute prime-time program dedicated to personal health and fitness, will be focusing on the educational needs of children with autism, and addressing the latest controversies examining the link between vaccines and autism spectrum disorder. En Familia airs each Monday at 11:30 a.m. and Consulta Médica airs each Tuesday on CNN en Español at 11:30 a.m.
A one-hour global simulcast special We Have Autism, anchored by CNN International’s Colleen McEdwards, will air at noon and focus on the experiences of families living with autism around the world and feature an interview with Suzanne Wright, the co-founder of Autism Speaks, an advocacy organization for people and families living with autism. McEdwards will also report on people living with extreme symptoms of autism, with a focus on Tito, a young man who despite his severe autism, has become a high-functioning poet and author. CNN international correspondent Wilf Dinnick will report on Qatar’s state-of-the-art Shafallah Centre that assists autistic children. The nation of Qatar is credited with leading U.N. efforts to establish World Autism Awareness Day as a day of global awareness. Also for We Have Autism, international correspondent John Vause will report from China about life with autism under communism. U.S. affairs editor for CNN International, Jill Dougherty will report on a family with a child recently diagnosed as autistic as they seek the best help for their child. We Have Autism will air on CNN/U.S. and CNN International.
Author Dr. Harvey Karp and American Academy of Pediatrics spokesperson Dr. Ari Brown, who do not believe that vaccines cause autism; author David Kirby of Evidence of Harm – Mercury in Vaccines and the Autism Epidemic, A Medical Controversy; parents of 6-year old autistic triplets, Randy and Lynn Gaston; and UCLA associate professor of pediatrics Dr. Jay Gordon, will be guests on Larry King Live. Larry King Live airs weeknights on CNN/U.S. at 9 p.m. and replays at midnight.
“Finding Amanda,” a one-hour Anderson Cooper 360° special, features a few of the approximately 600,000 American adults who live with autism. Gupta will introduce viewers to Amanda Baggs of Burlington, Vt., and others, who share with him how they experience the world – from their perspective. “Finding Amanda” will premiere on CNN/U.S. at 11 p.m. and replay at 2 a.m.
Showbiz Tonight will feature a report on a groundbreaking documentary, Autism: The Musical, set to debut on HBO on Tuesday, March 25. Showbiz Tonight airs on Headline News weeknights at 11 p.m. and replays at 2 a.m.
CNN Newsource will offer affiliates custom liveshots with medical correspondent Judy Fortin between 6 a.m. and 10 a.m. on April 2 about how families with older children living with autism cope with their challenges. Fortin’s package features a Grayson, Ga., family with a 12-year-old autistic child.
Additional programming focused upon autism will be announced closer to April 2.
CNN Worldwide, a division of Turner Broadcasting System, Inc., a Time Warner Company, is the most trusted source for news and information. Its reach extends to nine cable and satellite television networks; one private place-based network; two radio networks; wireless devices around the world; CNN Digital Network, the No. 1 network of news Web sites in the United States; CNN Newsource, the world’s most extensively syndicated news service; and strategic international partnerships within both television and the digital media.
Please visit my blog on Parents.com...
Sunday, March 23, 2008
~Tricia Regan, Director of "Autism: The Musical"
Until now that is, Ms. Regan. I’ve seen "Autism: The Musical" not once, but twice. (Read my previous blog about it here.)
Both times I laughed. Both times my heart swelled with pride for the kids that participated. Like most parents of kids on the spectrum, when I spot one, somehow they innately feel like my own flesh and blood.
I want to hug them. Kiss their faces. Rub their heads.
Cheer them on.
"Autism: The Musical" and the story of the Miracle Project gave me an opportunity to cheer.
Please. Whether or not autism has touched you personally, you really, really must take time to watch it. I promise at the end of the film you will have been thoroughly entertained and uplifted by this talented group of human beings.
"Autism: The Musical" hits the airwaves this Tuesday, March 25th on HBO. To learn more about it, see the recent coverage by The New York Times, Autism Bulletin, About.com:Autism and Autism Speaks.
Saturday, March 22, 2008
It's a beautiful day
Sky falls, you feel like
It's a beautiful day
Don't let it get away
I’m sitting on the couch in the family room, hair askew, oversized sweat pants folded at the waistband, no makeup to speak of. Amy just ran in from outside where she was riding her bike in the driveway. Nose dripping from the cold, she asks if she can go to an Easter egg hunt with our next door neighbors. I pick up the phone and leave a voice mail, making sure she didn’t invite herself along. I’m wondering if she should be wearing some cute sort of Easter frock, but decide it’s easier not to think about it. I won’t be there to witness the looks of scorn from other, more fashion conscious moms. Amy is oblivious. It’s all good.
Jack is stimming away with the drawer pull on the dresser in my bedroom. He had Girl Scout Cookies (Lemonades) for breakfast, doing a fantastic job approximating “Cookie” over and over. How could I say no to such effort? He washed them down with some Vitamin Water (Wa-Wa) so it wasn’t a complete nutritional disaster.
Bad, bad mommy.
I’m flying solo this holiday weekend and admittedly, some moments are better than others. Andy is due home late Sunday night. I’m attempting to pace myself.
One positive: the kids and I actually got out of the house yesterday. We went to Barnes and Noble to purchase some new Boxcar Children books for Amy, who brought home yet another glowing report card. Jack did really, really well, holding my hand meandering through the maze of books and periodicals. He even waited patiently as we checked out. (Normally it’s a nerve-wracking, juggling act, attempting to sign the credit card receipt and simultaneously insure he doesn’t bolt out of the front door and into traffic.)
I was feeling overconfident at this point, so when Amy asked if we could go to Chili’s for lunch, I thought, what the heck… The moment we walked into the restaurant, however, Jack fell apart, crying tears of despair that lasted the entire meal. Fortunately we had a really kind waitress. Unfortunately, we received many a dirty look from our fellow customers. At one point, familiar tears stung my eyes. Crazy, I thought to myself, that after all this time, the condescending looks can still get to me. A pox upon all those judging me and my beautiful children. We’re doing the best we can.
Next it was a quick trip to FedEx/Kinko’s so I could mail a couple of books (From Emotions to Advocacy and How to Compromise with your School District without Compromising Your Child) to a friend in Texas.
(Fellow autism parents will recognize the drill. You buys books. You share them with other autism parents. You expect them to pass them on to other autism parents. And so on. And so on.)
I supervised the kids, who were locked in the car, from a distance, as I completed the transaction. Admittedly, not a shining moment in my sometimes feeble attempt at motherhood, but they were safe and I was sane. Enough said.
We spent the remainder of the afternoon driving Superniece Erin to the South Station in Boston. She was headed to NYC for a weekend of twentysomething fun with friends. (Ah, to be twenty.) I welcomed the heavy rush hour traffic, as the kids unwound in the back seat.
Jack particularly loves riding in the car. Funny, in so many ways life feels stuck in that whole newborn phase when it comes to my sweet Jack. You remember what I’m talking about…. Praying for sleep. Driving around for no reason.
Maybe I should write book….What to Expect: The Autism Years.
Eventually we had to face reality and come home. I love my home. It’s warm and old and messy and filled with crazy photos of our little family.
It’s also currently being invaded by mice.
God help me. I’m strong. I’m tough. I’ve run a couple of marathons. Birthed a couple of babies.
But I can’t handle mice.
After the first sighting (in my pantry of all places) I frantically called the exterminator. (Normally Andy handles this sort of issue with no problem, but since he’s AWOL I had to outsource and outsource quickly…)
So the exterminator came over and placed traps in the attic and the basement. One poor little bugger has already been caught. Fortunately Superniece Erin hadn’t left town yet and disposed of the remains.
I have a bad, bad feeling about what I might find when the kids are hunting Easter eggs in the morning.
I’m not going to think about that now.
Now where are those Girl Scout Cookies…?
I need one.
Please visit my blog at Parents.com.
Wednesday, March 19, 2008
Tomorrow would have been Fred Rogers 80th birthday. Let's make the most of this beautiful day and wear a sweater in honor of someone who truly loved children of all shapes, sizes and abilities.
Anything for you Mr. Rogers.
Tuesday, March 18, 2008
A Little Background First:
In December, 2007, President Bush signed the Fiscal 2008 Omnibus Appropriations Act. The bill contained the following appropriations as authorized by the Combating Autism Act:
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. The NIH is required to provide a report by July 1, 2008 on its implementation of the research-related provisions of the Combating Autism Act, including funding levels for research recommended by the IACC's strategic plan.
Random Observations of One Autism Mom:
I attended my first IACC meeting on Friday, March 14th. The day began with members of the committee pontificating about the importance of urgency and collaboration. Unfortunately, as far as I could tell, not much action was attached to these declarations. Honestly, if it hadn’t been for Alison Singer insisting that they get moving due to the July 1st deadline in reporting their plan implementation as well as funding levels to Congress, I think they would still be sitting around scratching their heads and brainstorming with a whiteboard.
I was floored by Director of the NIMH, Dr. Tom Insel’s claim that there really wouldn’t be any additional funding for autism at the NIH because they were already spending at the CAA’s recommended level. Unfortunately, no data was provided to substantiate this claim.
I was also extremely disappointed at the Autism Coordinator for the NIMH, Dr. Joyce Chung’s admission that half of the IACC workgroups didn’t even take the time to review the requested input provided by stakeholders. Dr. Insel excused the workgroup chairs as just being “too busy.” Predictably, as a mom sitting in the audience hearing that statement, all I could think was how I took the time to provide input, but it wasn’t important enough to be considered. I believe we deserve better than that.
In addition, when it was mentioned that Dr. Chung should provide her 41 recommended objectives to stakeholders for input, she nixed the idea stating “we wouldn’t understand them.” How nice that she gets to determine what stakeholders do and don’t understand. I realize that she is a stakeholder herself, but find it a bit disillusioning that she has an apparent monopoly on comprehension of objectives.
Of course the cherry on top was the large number of representatives from the neurodiverse community lobbying against any mention of the words “prevention” or “cure”. Isn’t that sort of like me, an individual who is nearsighted, telling someone who is completely blind that they shouldn’t wish for sight? Myopic to say the least…
I hope moving forward that the words urgency and collaboration are taken to heart by the members of the IACC. I suppose this is just another reminder that I’m too idealistic. When it comes to autism, nothing is ever, ever easy…
Sunday, March 16, 2008
I walked from the garage to the house I had left eight, eternal days earlier.
A transparently thin layer of fresh snow covered the ground. Amy stood on the deck in her bare feet and short sleeved t-shirt.
“Mom, you’re home!” She threw her arms around me. “I missed you!”
“I missed you too, sweetie.” I squezed her tightly and then we headed inside. Daisy the dog bounded around us, tail thumping with glee. All was right with the world. I had my beautiful girl.
Force of habit, I mentally prepared myself as we stepped into the mudroom. I was dying to see my Jack, but I’ve learned over the years to adjust those expectations. He’s a very loving kid, but generally has a unique way of expressing it.
Even so, I found myself longing for the typical “I missed you Mom!” response, the one Amy had delivered so effortlessly and enthusiastically just moments earlier. Odds were that he would eventually run into the room, spot me and then promptly run back out. I would track him down and steal a hug. He would oblige and then be on his way.
My heart skipped a beat when he bounded into the kitchen, followed by superniece Erin.
“Look Jack, Mom’s home.” Andy prompted, having trudged in with part of my luggage. Jack stopped directly in front of me and I squatted down, eye-to-eye with my beautiful boy. Talk about a sight for sore eyes.
“Hi buddy. I missed you.” I said, holding my breath.
He studied me, blue eyes sparkling with excitement and busted out a grin that spread from ear to ear.
Then he started to giggle. The giggle originated deep in his belly and drifted out of his cherry lips into my ears like a favorite track on a CD, the kind that I set on endless repeat. The yummy warmth of pure love filled my chest.
Sometimes there are just no words. Sometimes that's a good thing.
He threw himself into my arms and did his best to stay there the rest of the day.
He missed me.
He really missed me.
Please visit my blog on Parents.com.
Friday, March 14, 2008
Over the past few years, CNN Medical News has provided extensive coverage of autism. From the stories of parents and children living with the disorder to the latest science on possible causes to a vast array of treatments and therapies, we have followed most major developments in the field. Every story we report on autism has been stirred an incredible amount of passion from our viewers and our readers.
Now it's your turn to have some of your own questions answered. CNN is planning a comprehensive day of coverage in recognition of World Autism Awareness Day on April 2. The latest statistics from the Centers for Disease Control and Prevention say that at least 1 in 150 children are affected in the United States.
In a report called, the "Myths of Autism" we hope to dispel any misperceptions about the disorder and the people who live with it. We also want to be very clear that there is still a great deal the scientific community has yet to learn about autism and its related disorders.
I encourage all of my readers to take time to provide your valuable input. I knw from personal experience that you all have some powerful messages to share! To do so, click here.
Coming soon a Boston Marathon training update as well as my report from the IACC. (It was sort of like watching sausage being made ... I'll leave it at that for now...)
Wednesday, March 12, 2008
“Good luck with your son, Hon…” the legislative aide from my Congressman’s office patronizingly patted my shoulder as I departed his DC office.
I couldn’t believe I had just been Hon-ed by this twenty-something staffer.
A little background: I spent all day yesterday visiting the offices of my representatives on Capitol Hill with my fellow New Englanders, talking up autism legislation. We were there to ask for continued funding of the Combating Autism Act (CAA) as well as the Department of Defense’s Autism Spectrum Disorders Research Program (ASDRP.) We also were asking our representatives to cosponsor the Expanding the Promise for Individuals with Autism Act (EPIAA) that was introduced last year. This legislation would provide lifetime services for individuals on the spectrum and is crucial since individuals with autism currently age out of programs when they turn 22.
The legislative aides from Senators Kerry and Kennedy’s offices were empathetic. They were well-prepared for our meetings and took time to listen and take notes. Interacting with them was an extremely positive experience and I look forward to working with them going forward as we strive to improve the quality of life of those dealing with the challenges of autism.
My Congressman, who shall (ahem) remain unnamed, might want to consider giving his staff a bit of sensitivity training. The staffer who met with me and another father of a child with autism from his district had absolutely zero interest in hearing our stories or looking at photos of our kids. He was, however, extremely interested in lecturing us about how we as constituents need to do whatever we can to put pressure on our legislators to prevent President Bush from making the temporary tax cuts he implemented while in office permanent in nature.
Translation: He would scratch our back if we would scratch his.
I plan on contacting aforementioned anonymous Congressman’s office and arrange for a meeting next time he is local. He should be aware of how disrespectful this staffer was. The good news is that the disrespectful staffer didn’t represent the actions of my Congressman, who long ago signed on as a co-sponsor of the EPIAA and who has historically been extremely supportive of autism-related legislation.
As I walked down the halls of the cavernous congressional office building, the echo of my high heels bouncing off the walls around me, I couldn’t help but think to myself that this smug little dude has a huge karmogram coming his way.
On a positive note, I was also able to attend a press conference with Senator Chris Dodd, who introduced a brand new bill called the Disability Savings Act of 2008. This bill in a nutshell is basically a 529 plan for individuals with disabilities. Considering the fact that our most advantaged individuals are given a leg up to save for their education (as well they should) via 529's, it makes perfect sense that those dealing with specific disadvantages be given an opportunity to save tax-free for their future as well, even if that future doesn't follow the typical college track.
I encourage you to contact your representatives and ask them to support this legislation as well as the others mentioned previously. To learn more about them, please visit www.autismvotes.org.
Here’s to life, liberty and the pursuit of happiness … for all individuals, including those with autism.
With apologies for being juvenile, I hope that rude-staffer-dude is experiencing an excruciating itch in an unreachable spot on that aforementioned back of his...
Sunday, March 9, 2008
'Twill be in the valley of love and delight.
I plopped down in seat 6C of the American Eagle plane and tossed my laptop underneath the seat in front of me. I released a deep sigh of relief. I was finally on my way. I relished the thought that I was flying solo, a rarity for me. No behavior problems to worry about. No multiple trips to the bathroom. No diaper bag or snack allocation. Just peace, quiet and perhaps a luxurious nap.
Frère Jacques, Frère Jacques,
A tiny voice wafted over the seat in front of me.
Sonnez les matines! Sonnez les matines!
Din, dan, don. Din, dan, don.
I opened my eyes and began to sing along. A beautiful red-haired toddler, eyes peek-a-boo-ing over the dirty blue airline seat, smiled at my spontaneous participation.
Our eyes locked.
We sang again.
She moved on to her ABC’s. I happily joined in. We laughed. We sang.
It was so effortless … her ability to interact with me.
So incredibly simple.
Predictably, I thought about my sweet boy. Way past the toddler stage and well on his way to turning five.
Still no songs.
Still no words.
So incredibly complex.
How I long for some clarity.
This was not the first beautiful red-haired girl I encountered over the course of the week. Girl number one beamed at me via my television screen, flanked by her loving parents, who were being interviewed by Larry King about the government concession in their vaccine injury case. She fiddled with her earpiece as her father, Dr. Jon Poling stated,
“What we're trying to say, and the theory of what we felt happened to our daughter Hannah, is that she has a susceptibility to injury from stress of vaccination or potentially stress with the mitochondrial disorder of other potential insults. But clearly, what happened with our daughter was following a series of vaccinations that occurred in July.”
Clearly, what happened to our daughter …
I’ve met many friends along the way in our journey into Autismville that have echoed the same story. They knew when it happened. They witnessed the change in their child. It broke their hearts. It broke their trust.
But they knew.
For our family, it has never been that simple.
Jack never regressed.
Jack never spoke.
Jack never pointed.
Jack never played appropriately with toys.
Absolutely nothing was clear with my beautiful boy.
I hope as the world reads the news reports and watches Larry King, they will remember that there are so many Jacks still out there...the beautiful, unsolved mysteries of this spectrum.
So incredibly complex.
Thursday, March 6, 2008
Crazy in the world of autism-related news.
Crazy in my personal life as I get ready to head out of town for a week.
(Note to self: Who are you kidding? You can’t leave. Loose ends will unravel completely! You will have a nervous breakdown. You can’t possibly get it all done. Not worth it … not at all…)
So here’s my ultra-quick run-down of the news of note:
If you read various news publications or receive e-mails from any of the autism advocacy organizations, you’ve probably already heard that John McCain is speaking out about autism. According to the New York Times, when asked about autism by the parent of two autistic children at a town-hall-style meeting Tuesday afternoon in Houston, McCain responded:
“I think that one of the terrible things that has happened in America, and not as well observed as it should have been, is the increase in autism. And our hearts and our prayers go out to you and your family. We don’t know what’s causing the increase in autism amongst young children, but I think there is clearly overwhelming evidence to indicate that it’s on the rise.”
He then spoke of the need to find out what is causing it, and to devote resources to help educate autistic children.
Okay. Glad we’re clear on that Senator. I'm still not sure who I'm voting for. By the way, please tell Cindy I really prefer her with shorter hair.
The other attention-grabbing headline is regarding the US Vaccine Court concession in a vaccine injury case. According to the Associated Press report:
The girl has a disorder involving her mitochondria, the energy factories of cells. The disorder — which can be present at birth from an inherited gene or acquired later in life — impairs cells' ability to use nutrients, and often causes problems in brain functioning. It can lead to delays in walking and talking.
Federal officials say the law bars them from discussing the case or releasing documents without the family's permission. However, The Associated Press obtained a copy of the concession by U.S. Department of Health and Human Services officials.
According to the document, five vaccines the girl received on one day in 2000 aggravated her mitochondrial condition, predisposing her to metabolic problems that manifested as worsening brain function "with features of autism spectrum disorder." In the 1990s, the definition of autism was expanded to take in a group of milder, related conditions, which are known as autism spectrum disorders.
The document does not address whether it was the thimerosal — or something else entirely in the vaccines — that was at fault.
The compensation fund lists problems with brain function as a rare side effect of certain vaccines. Such problems are enough on their own to warrant compensation, even without autism-like symptoms, and the fund has made numerous payouts in such cases.The Health Resources and Services Administration, which is in charge of the fund, said: "HRSA has maintained and continues to maintain the position that vaccines do not cause autism."
So, once again, it’s interesting, but not really a slam-dunk for me personally. As far as I know Jack is fortunate enough not to suffer from mitochondrial disorder. I hope that the child mentioned in this case gets the help she needs and that her family can rest a little easier knowing the financial pressures have been lessened. I also hope that the general public doesn’t construe this as the end-all be-all to the mystery of autism.
There is so much more work to be done.
If you care to weigh in on the issue, go to Larry King Live. (Larry is doing a show on the issue tonight, Thursday, March 6, 2008.)
And with that, I’m off. I’m headed to DC for a week of visiting Capitol Hill with the Autism Speaks contingency and also attending the IACC meeting as an extremely interested member of the general public.
I look forward to reporting from the field…
Sunday, March 2, 2008
I know the heart of life is good
Autism, the pediatric neurologist nonchalantly scribbled in searing black Sharpie across Jack’s medical record.
No. No. No.
That’s permanent, I thought to myself.
The floor beneath my feet immediately gave way and I plummeted into a black hole of grief and worry. How could this cold-hearted doctor make such a pronouncement on one that was so little? He’d spent what? Maybe half an hour with us? How could that be enough time? Besides, it was just too early to tell. Jack was barely two. He was a boy. We needed a little more time to determine if the preloaded developmental software would begin triggering in his brain. He would point, speak and engage in his own time on his own terms.
As the time passed, the time that I had hoped would somehow erase the Sharpie’s developmental death sentence, the realization couldn’t be avoided. The Sharpie had recorded the proper diagnosis. The black hole wasn’t some imaginary state of being. It was real. Our family had fallen so deeply into it I had no idea how to get out.
But I had to. Indulging in the luxury of the pity party only left us sitting deep in the black hole. So I wiped away the tears, peered around in the dark and attempted to assess the situation. What is this hole? What can I grab onto to help me climb out of it? I needed a plan.
I reached out to friends. I talked to my pediatrician. I attended seminars and lectures. I clung to the kindness of our Early Intervention team. I spent too much money on Amazon, buying book after book. I spent hour after hour hunched over the computer, scouring the internet.
It felt unnatural at first. We don’t belong in this hole, I thought. But slowly my eyes adjusted to the different lighting. I began to see our family wasn’t alone in the hole. There were other parents and professionals who were there, reaching out, providing support and information.
I felt better.
It took a while for me to figure all of this out. Those first 100 days post- diagnosis were overwhelming … confusing. More difficult than I can possibly express. Two years later, I’m happy to say that the world didn’t end. Our family didn’t implode. Jack is getting wonderful help and support. He’s making progress. He’s a happy kid. We’re a happy family.
We’ve seen the light of day.
I just wish I had known more. I wish it hadn't been so difficult to piece together information. I wish that the neurologist had known more. I wish my pediatrician had known more. I wish EI had known more.
I’m happy to report that Autism Speaks has recognized the need for a road map those first 100 days. An organization that is heavily staffed by parents of individuals with autism, they stepped up and this past week unveiled an invaluable new tool, The 100 Day Kit.
According to Lisa Goring, Autism Speaks Director of Family Services as well as the mother of a child with autism, “Parents need to know that they are not alone. The 100 Day Kit and the Autism Response Team will help families get informed, get organized and get connected to important resources and support services in their community.”
To the newly diagnosed, I hope that you will take time to access this tool. Lisa's right. You are not alone.
And to the professionals who work diligently to help our families, I hope you will consider reviewing and utilizing this tool as well. Knowledge truly is power. Please pass it on.
To read the press release regarding the new 100 Day Kit, click here.
Please visit my blog on Parents.com.