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shannonj - A Hopeful Heart

City: Harpswell
State: Maine
Country: USA
Member since: Jan 23, 2007
Last logged in: Dec 01, 2008

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Mother, Biomedical Intervention, OCD, Anxiety, Autism Spectrum Disorder, SCERTS, Running

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shannonj's Page URL

http://www.foggyrock.com/MyPage/wynnsmom

shannonj's Bio

My name is Shannon and I have a great husband and 2 amazing kids.

My oldest, Wynn, has autism and still struggles, after all these years of treatments and therapies, with anxiety and aggression. At his best, he is funny, intuitive and sensitive.

My daughter, 12 year old Haley, is strong and independent, creative and musical. She has been a shining example for Wynn and taught him many of his first words and skills by sheer example.

Steve is my husband of 19 years and partner in this endeavor to be a family in this crazy world of autism. Out of a need we had to have better communication with Wynn's team members, he created a web application called iAbida.com. It has been a project from his heart, and he makes it available to all families, around the globe, for free.

And me? In spite of being a terrible klutz, I have learned the fine art of juggling....motherhood, advocacy, household management and working from home. Foggyrock is my latest project--to fulfill my own need to be associated with other fantastic folks, like you, who I knew were out there.....Thank you for allowing me into your life through this community.

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shannonj's Blogs

NAA comments on Michael Savage

by shannonj on 07/25/2008

A Statement from Wendy Fournier, NAA President

For the last week, our community has been completely enveloped in the Michael Savage controversy. I...

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A Statement from Wendy Fournier, NAA President

For the last week, our community has been completely enveloped in the Michael Savage controversy. It infuriates me that this one man has managed to take away so much of our already limited time and energy by forcing us to defend ourselves and our beloved children against his vile remarks.

When I first became aware of Savage’s comments, I immediately got in touch with Mark Masters, the CEO of Talk Radio Network and Savage’s boss. Mark was aware of the comments but had not yet listened to the show. We spoke for a long while and I quickly came to realize that I was speaking to a kind and compassionate husband and father. Mark said that while he hadn’t yet heard the tape, he suspected that Savage was talking about one of the issues that bothers him most, the over-diagnosing and drugging of children in America, and that it was possible that his remarks were being taken out of context. Having dealt with the media and having seen the ridiculous way members of our own community have been edited to look like crazy, desperate parents, I was open to the idea that Mark’s suggestion may have been a possibility. Mark promised to speak with Savage and to give us the opportunity to refute his comments on the air.

On Monday evening, Mark fulfilled his promise and I was able to speak with Savage on his show. Leaving the door open to the chance that he was indeed taken out of context, I pushed my anger toward him aside and discussed with him many of his views about healthcare in America and the sad reality that families affected by autism face. Savage has several problems with the medical community in general that I personally agree with, the most frustrating of which is the over-zealous desire to drug our children.

However, when it came to Savage’s views on Autism specifically, he was completely misinformed and off the mark.

He believes that autism is being over-diagnosed. There may be a relatively small number of children who are wrongly diagnosed with an ASD, but for the most part, an autism diagnosis is not something that is given lightly. Those of us whose children have been through the evaluation process know that it is extensive.

On the subject of diagnosis, our kids are diagnosed based on observation of skills and behaviors. All the while, the medical community completely fails to investigate what might be causing those behaviors. This needs to change. We need research to turn away from number-crunching epidemiological studies and the search for the elusive Autism gene, and start looking from a biological standpoint at the children who are currently affected. Your child may very well meet the current diagnostic criteria for Autism, but what if he or she is really suffering from heavy metal toxicity or auto-immune encephalopathy, for example? Those illnesses are known to cause symptoms of Autism. If your doctor kept digging to find the cause of your child’s neurological dysfunction, you would likely come out on the other side with a treatable illness and hope for the future, not to mention health insurance coverage for treatment. But instead, you are told that your child has autism, there is no treatment, hurry to get on a waiting list for behavioral therapies. Mainstream physicians need to start recognizing and treating the underlying medical issues that are causing the symptoms we collectively observe and diagnose as autism, only then will we start to make some real progress. My hope is that one day, no child will be diagnosed with “Autism”, that all sick children will be properly diagnosed and successfully treated for the illnesses that they truly suffer from.

Back to Savage and his misconceptions, this one is almost amusing. He actually thinks that having a child with autism opens the door to free medical treatment and services from the government, suggesting that parents might actually push for a diagnosis in an effort to screw the government and our fellow taxpayers. Those of us in the trenches know that the word “autism” is the last thing a parent wants to hear. Savage’s implied freebies are nowhere to be found. The minute your child is diagnosed, you need to fit yourself with a suit of armor, a shield and a big-ass sword, because you have just taken the first step into a never-ending fight to get the services and medical care that your child needs. Our kids are placed on waiting lists for services that can be years long, our health insurance companies turn their backs on us, and our overwhelmed and under-funded school districts force us to fight for even the most basic services to help our kids. The number of families facing bankruptcy and losing their homes to provide their children with the care they need is staggering.

Savage also thinks that greedy lawyers are somehow involved, looking for ways to milk the pharmaceutical companies for families who claim that vaccines caused their child’s regression. He is completely ignorant to the fact that manufacturers are protected from all liability on vaccine injury claims thanks to the National Vaccine Injury Compensation Program. I tried to point this out to him, but he pushed on with this false assumption. What I didn’t realize until hearing the show later, was that my phone line was completely muted when Savage was speaking. There were several times when I tried to interject and disagree with him, and I was simply not heard. This is misleading and my silence could be interpreted by some of his listeners as agreement. I’m not happy about that.

Savage’s producer asked me to have several other guests from our community standing by to be interviewed during the show. I did that, and not one of them was included. The callers who were put on the air appeared to be hand-selected to participate in the show with the sole purpose of allowing Savage to backtrack and basically cover his own behind.

Savage claims to be an advocate for children’s health. One might think that instead of ranting about bad parenting, he would be questioning why we have so many sick children in this country. Coinciding with the increase in recommended vaccines, we’ve had an increase in chronic diseases including Asthma, ADD, ADHD, Juvenile Diabetes, and yes, Autism. Why do our government health agencies refuse to compare the overall health outcomes of vaccinated versus unvaccinated children? Why do they continue to inject our babies with substances that are known to be toxic to the developing brain and immune system? Why is our government being allowed to treat an entire generation of children like lab rats, by requiring an ever-increasing number of vaccines and conducting absolutely no safety studies on their cumulative effects?

Last night, I received an email with a link to a new website, savageonautism.com. He’s got a website for this now? On this site, there is a link to an audio clip of my discussion with Savage. It noted, “Savage speaks with Wendy Fournier, President of the National Autism Association who says that she has much common ground with Savage”. Again, misleading. I do not appreciate the implication that I am in any way on his side and I will not be used as a pawn in his attempt to backtrack on his comments. I contacted Talk Radio Network about this and the reference was promptly removed.

Mark Masters from TRN has offered to air public service announcements on their nationally syndicated shows in an effort to educate listeners on the reality of autism. For that I am very grateful. I hope that it will undo some of the damage that has been done.

That damage is very real, and it frightens me for our children. I just got a phone call from a 74-year-old lady from California who was literally screaming at me, saying that we are a bunch of hysterical mothers who refuse to discipline our kids. She could barely catch her breath, and she’s calling us hysterical? I ended up hanging up on her and she’s called back 6 times already - that’s how fired up and anxious she is to criticize us as parents and the children we love. This is the damage that Mike Savage has done, whether he meant to or not is completely irrelevant. There are people out there who are taking his words at face value and his message is one of hate.

To the fine people who are sending me hate mail about freedom of speech, you can stop. I’m all for it. You can say anything you want to in this country, but if you choose to attack our kids, be ready to defend your comments. We’re already suited up and are getting pretty good at wielding our big-ass swords.

In closing, I have listened with an open mind to Savage’s claim that he was taken out of context. My personal conclusion is that he was not, he’s lying to us. There are several reasons why I don’t believe him, but I keep coming back to one very significant quote. Savage claims he was talking about the “misdiagnosed”, not kids that truly have autism. But during his deplorable rant he said, “What do you mean they scream and they’re silent?” He was talking then about children who are silent, children who are non-verbal, children who are severely affected by autism, children like my beautiful little girl.

Michael Savage, take your father’s advice. Don't act like a moron. You'll get nowhere in life. Stop acting like a putz. Straighten up. Act like a man. Whether you actually meant to hurt suffering families or not, the simple fact is, you did hurt us. And for that alone, you should man up and apologize.

Wendy Fournier, President
 National Autism Association
wendy@nationalautism.org

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Presidential Candidates Give Their Views on Autism and Health Care

by shannonj on 07/18/2008

Read the statements from John McCain and Barack Obama on ASA's Vote for Autism page:

http://www.autism-society.org/site/PageServer?pagename=resear...

Tissue Bank: Autism Research Offers Hope

by shannonj on 06/29/2008

Hi Foggyrock members-
Autism Research Institute asked me to write a personal testimony about tissue donation for their recent mailer. It is such an ...

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Hi Foggyrock members-
Autism Research Institute asked me to write a personal testimony about tissue donation for their recent mailer.  It is such an important issue that I thought I would share it with you too....Here it is:

No parent wants to ever consider that they will outlive their  child.  It goes against every parental instinct.  Hence, from before our babies are even born, we take every possible precaution to insure health, safety and a long life.  From prenatal vitamins to sonograms, from baby monitors to diaper cream, from seat belts and helmets to life jackets, we spare no costs in protecting our children.  It is more than a duty.  It is an undeniable responsibility that isn't to be taken lightly.
  
However, history teaches us that, no matter how careful and cautious we are, we can't always keep our children safe.  Especially in a world where the rates of autism continue to rise...in every community, and even in our own homes.  No car seat or crib bumper set prevented autism from knocking on my family's door.  My  son,  Wynn, was diagnosed ten years ago, in spite of my best efforts otherwise.  My heart broke in two that day, as any  parent can imagine.  Even today, all these years later, I still feel physical pain while I learn of another child being  diagnosed with this same life-altering disability.  I find myself incredulous that we are still in the dark as to the causes  of autism and of knowledge of treatments that would offer freedom and relief to a population that deserves so much more.
  
That is why I've registered both of my children with the NICHD Brain and Tissue Bank for Developmental Disorders.  It's excruciatingly painful to imagine a life without either one of them, but pondering a future without answers is beyond  comprehension.  Those few minutes of my time might just make all the difference. I encourage you to take a few  precious minutes as well.......
  
 Shannon Johnson
 Co-Founder
 Foggyrock.com

FROM Autism Research Institute:

Dear Autism Research Institute Friends,

The Autism Research Institute is working closely with scientists and clinicians throughout the country in an effort to find effective treatments for this devastating disorder. According to these experts, limited availability of tissue from children who suffer with autism is hampering research because without actual tissue it is difficult to determine the basic biological defects responsible for this disorder. In an effort to increase research, the ARI has entered into a partnership with the Brain and Tissue Bank for Developmental Disorders at the University of Maryland in contract to the National Institute of Child Health and Human Development (NICHD) to support tissue donations.
  
 Anyone Can Be a Donor
 Anyone, regardless of age is invited to register as a tissue donor. The tissue bank is just as much in need of control tissue as tissue from those with autism. Tissue must be recovered within 24 hours because after this time the tissue has lost most of its usefulness for research purposes. Therefore, advanced registration is especially important in that it enables the intricate process of tissue recovery to occur in a timely manner.
  
 Even if a person is not registered in advance, tissue donation may still be possible by calling the toll free number above. The Brain and Tissue Bank will make every attempt within its means to ensure successful tissue recovery.
  
 To register: 
Call 1-800-847-1539 or 1-410-706-1755 (from outside the continental U.S.) to request a packet or discuss any questions or concerns relating to tissue donation.
 
 Contact the NICHD Tissue Bank:
 University of Maryland
 Department of Pediatrics
 655 West Baltimore St., 13-013 BRD
 Baltimore, MD. 21201-1559
 Toll free 800-847-1539
 Ph. 410-706-1755
 Fx. 410-706-0038

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TODAY JOHN ELDER ROBISON CAN LOOK ME IN THE EYE

by shannonj on 05/30/2008

I just read Kim Stagliano's recent blog post on Age of Autism last night and wanted to share it with you. Apparently, Aspergian and best-selling auth...

A Favor, Please

by shannonj on 05/18/2008

Hi- I'm working on putting together an electronic press kit to share with the media and also other autism organizations to give them an understanding ...

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Hi- I'm working on putting together an electronic press kit to share with the media and also other autism organizations to give them an understanding of Foggyrock and it's benefits.  Something that I would love to include in the press kit is a list of links from members of this community...giving their personal testimonial about foggyrock on video.  In other words, I'm looking for members who are willing to videotape themselves talking about what Foggyrock means to them, how they found it, how they participate, who they have met, what resources they have found etc...You would then download it to Youtube and give it a title that has both of the words Foggyrock and autism in it for easy reference.  Then, I would be able to post that youtube link in my electronic press kit and media and the organizations that I send it to will have access to the feedback of real members.  Steve and I plan on putting our story of starting Foggyrock on Youtube as well--as soon as we figure out how to connect our new camera to the computer!!!  I can't wait to hear from you!

Thank you-
Shannon

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Who Do You Save?

by shannonj on 05/09/2008

Yesterday, a CNN article was brought to my attention regarding newly designed steps health professionals will be urged to take in the event of a natio...

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Yesterday, a CNN article was brought to my attention regarding newly designed steps health professionals will be urged to take in the event of a national crisis such as a pandemic.  The title was Docs List Who Would be Allowed to Die in a Catastrophe.  Apparently, the CDC, Homeland Security and DHHS has put together a profile listing the members of society who would be denied treatment if medical staff and resources are limited.
This list includes, among others, those individuals with severe mental impairment.....

I don't know about you, but I don't feel comfortable waiting around to find out if that list might include my 13 year old son with autism.

Wanting to discuss this disturbing topic, I reached out to my new friend, Lisa Jo Rudy, of About.com fame.

From our e-mail conversation came her recent blog.  Take a few minutes to read her blog and let her know what you think on this matter.  Unfortunately, no one is going to advocate better for our kids than us, so we do need to be paying attention...

http://autism.about.com/
(you may have to scroll down)

CNN Article: 
http://www.cnn.com/2008/HEALTH/05/05/pandemic.rationing.ap/index.html

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Twenty-One Birthday Candles.....What Comes Next?

by shannonj on 04/06/2008

At age 21, many of our children on the spectrum will age out of the system. What does this mean for the individuals who have had their needs supporte...

Your Story on CNN

by shannonj on 04/03/2008

Hi-
In the last newsletter that I sent out, I encouraged members to post their stories on the CNN website, as the site was requesting photos, videos ...

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Autism is Financially Devastating

by shannonj on 03/03/2008

Science Daily just published news of a study indicating that raising a child with autism can be financially devastating to families. The study said:
...

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Science Daily just published news of a study indicating that raising a child with autism can be financially devastating to families.  The study said:

"Some families quoted in the study reported skipping meals to be able to afford therapy for their children. Others talked about robbing their future by depleting savings, emptying their 401K plans, selling stocks and even filing for bankruptcy. More costs are added to some families who need counseling and medication for themselves in order to cope with the stress of raising a child with autism, further straining the family budget."

What are some of the other costs of raising a child with autism that you have experienced?  The added expense of hiring "trained" personnel for babysitting or respite care.  Special equipment, special needs toys, expensive foods for special diets, travel to medical specialists, un-reimbursed medical expenses......What else do you spend money on?

How do you save for the future and also provide financially for the current needs of your child?

What are parents to do?  What do you think?

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Oprah and Autism

by shannonj on 09/19/2007

Did anyone get the chance to watch Oprah today as she interviewed Jenny McCarthy and Holly Robinson Peete about their sons with autism?
If not, you c...

Jenny McCarthy on TV for autism

by shannonj on 09/17/2007

Just a reminder:
Jenny McCarthy - actress, comedian, model, mother, and author of three NY Times bestsellers can add one more title to her name and ...

Columns and Editorials on Foggyrock

by shannonj on 09/07/2007

Hi again-
I would love to get your opinion on my latest bright idea: I think it would be great to have different folks in the field/world of autism ...

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Hi again-
I would love to get your opinion on my latest bright idea:  I think it would be great to have different folks in the field/world of autism to  share with us their thoughts, opinions and experiences in a regular column here on Foggyrock.  For example, I have asked a well-known author (who I can't name because she has not committed yet) to allow Foggyrock to publish a short column each month based on her knowledge of autism and the information that she has compiled in her series of books.  I also got my mom, Nancy Cale, to agree to write a monthly column about all the interesting people she meets as the VP for Unlocking Autism and hotline answer-lady (sorry Mom, I didn't know your official title at the time of publication and can't seem to find my phone under all the laundry on my kitchen table to call you!)for Autism Research Institute.

What do you think?  Will that be something that would be helpful and interesting to you as a member?

Okay, now I need you to brainstorm and think of other folks who might be willing to write a monthly column.  It can be anyone--really...the only criteria is that they need to have an intimate understanding of the ASD community and they need to be able to write well.

Just let me know your suggestions.  I'll call on anyone!  Being the parent of a child with autism has cured me of any pride issues---I'm 
not too proud to do anything for my kid...our kids.  So you send the names and let's see what happens!

Thanks-
Shannon Johnson
Editor in Chief

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Your Dream School

by shannonj on 09/05/2007

If you read the recent post from About.com, you may be fantasizing about a dream school for your child with autim like I am. I would love to hear yo...

Autism-Inspired Businesses

by shannonj on 08/29/2007

Do you know someone who has been inspired or motivated by the autism in their life to start a business or invent a product that addresses a need in th...

Picture This

by shannonj on 08/27/2007

Picture This
by Shannon Johnson
August 26, 2007

I haven’t pointed a camera at my son in over a year. In his current state of anxiety-induced ho...

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Picture This
by Shannon Johnson
August 26, 2007

I haven’t pointed a camera at my son in over a year.  In his current state of anxiety-induced hospitalization, he gets veto power over such decisions.  And he has said, "No more pictures, Mom.  Use the ones you already have."  He also gets to wear his pants on backwards and his hair over his ears and flipping up in the back, thanks to the 5 month sabbatical from grooming.  Such decisions are his, since they don’t appear to belong in Basket A (ever read The Explosive Child by Ross Greene?), and are not a priority when one steps back to view life’s “Big Picture”.  
	So, I satisfy myself with ancient photos of a laughing boy in a baby pool and his teasing eyes looking up from a puppy hug.  Yet I still crave the chance to document on film or digital-whatever-ness this boy who is not so much a boy as a year ago.  Who is taller and thinner-in-the-face.  Whose eyes have seen more of life and appear to look longer and deeper in a glance.  I don’t want to ever forget this year, for what a year it has been.  Out of sheer respect, however, my camera stays behind the cabinet door.  It’s mere presence is a threat, for some reason.  So it gets dusty in my quest to represent a safe haven for my son once again.
	Yesterday, he came home from the hospital for a visit.  We were all nervous and excited to be together as a family.  After chasing the “bad guys” through the yard and looking for squirrels in the woods, he came inside to find his sister.  “What’s this?”, he asked, as he displayed a large cut of fake leopard-skin fur.  “This is my new leopard costume.”  He grinned as he wrapped the fabric around his shoulders and hunched low in a prowl.  “Hey, where are my crocs?” he asked as he searched for his Fantastic Four monster shoes that were an abandoned Christmas present from several years back.  I cracked up that he called them “crocs”--the popular plastic slip-on shoe that has become the uniform of many of the staff on his hospital unit.  The orange, over-sized monster shoes were certainly more unsightly than the real crocs, but the resemblance was there, and the comparison was pure Wynn.  We velcroed them over his feet and he pursed his lips in satisfaction.  As he stood there, all fake-fur and giant-footedness, the framer and scrapbooker in me longed to make this a kodak moment.  To click it, print it, crop it, and frame it .  The moment was rich--full of all the good things that are my son.
	Instead, I stared harder and breathed deeper as I witnessed this moment and willed it to last just a little bit longer.  I noted with clarity each detail, tucking it deep within the recesses of my mind, recognizing that the image belonged to me and me alone.
	“What are you looking at?” asked my son as his furry spots turned in a sweep and stomped out of sight.

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