AGE OF AUTISM

Vaccine Side Effects: What Every Mom Should Know.

By Cathy Jameson

For the last few weeks most of my posts here have been about vaccines and vaccine safety.   Some of you may be missing my usual hopefully-ever-after writing, but vaccines have been bugging me lately.  When that happens, I don’t feel very hopeful or very happy.  

No matter what I’m reading–a magazine, a mainstream newspaper, or a blog, I can’t escape mention of vaccines these days.  Sure, I subscribe to a few places that typically highlight only vaccine news, but I’m reading about them in other places, and the news isn’t looking good. 

I can’t shake the disappointment I feel after seeing these stories.  Most of what I’ve read lauds vaccines claiming that they are safe despite their side effects, and that they’ll work if we give them a chance, and what’s the big deal, anyway?  Oh, when they don’t work?  Well, we’re sorry, let’s move on.  I know I speak for many when I say that that kind of news reporting is depressing and unacceptable. 

Can you imagine if vaccine news stories across the mainstream channels would actually reveal all there is to know about the vaccine--including the bad stuff?  I’m talking about the side effects, the lingering pain and the secondary illnesses that turn into everyday struggles after receiving a vaccination.  That information should be discussed more openly in the exam room and in the news but hardly seems to be.  I know this because I’ve been there in that exam room before and never got that sort of information.  People I speak to today about their vaccine encounters say the same thing.  When I hear from them, as they reach out to me for help, it’s clear that the right things are still not being said: “When do I worry about this rash?  The doctor didn’t tell me anything!” “What? I never knew you can still get the chickenpox after getting the chickenpox vaccine!”  “What should I do about this fever?  It’s so high, and it won’t go down!”

Side effects aren’t being mentioned in the articles I’ve viewed lately, and the moms I run into are still unaware of them, so it’s time to expose them for what they are.  Side effects are dangerous.  Side effects happen.  They can, and will, a last long after a vaccine is administered. 

Now, some people may be aware of side effects if they’ve done any kind of basic research.  The CDC tells us that side effects can be mild, moderate or severe.  Basic information might also come from a medical provider who takes the time to have a conversation about them.  Information may also come from the VIS (Vaccine Information Sheet).  This handout, usually a two-sided piece of paper, is required by law to be given to someone receiving certain vaccines. 

Less Than Thankful, More Than Grateful

By Cathy Jameson

This picture of my boys was taken a year ago.  Ronan, in the green sweatshirt, stopped moving long enough to sit down and look straight into the camera.  Sitting proudly next to Ronan is his younger brother, Little Buddy.  Little Buddy, who was also injured by his vaccines but has recovered, plays more of a big brother role than Ronan is capable.  

Little Buddy prays daily for Ronan hoping he too will be free of his vaccine injury.  He hopes that Ronan will be healed so that he can talk and so that they can play together.   With a heart bursting with pride, love and devotion, Little Buddy has enlisted his classmates to pray also.  Together, they offer special intentions for Ronan’s health and healing.  I need to take a lesson in Little Buddy’s devotion and perseverance because lately, I am having a hard time seeing too many positives in Ronan’s situation.

I certainly have some things to be thankful for today, but I would be remiss if I didn’t admit that I feel much more worry than thanks.  We’ve had to handle some uncomfortable issues lately:  wandering, an increase in seizures, stagnation of skills and negative behavioral concerns.  

I have been less than thankful for the many reminders of what’s making Ronan’s life more difficult.  Those difficulties, and the reality of Ronan’s vaccine injury and autism diagnosis, have me riding an emotional roller coaster.  Time heals all wounds, though, right?  

If I give it a few days…

If I shake the worry while looking for a bright side…

If I let some of the nagging go…  

If I hope for the best…

The Bubble Bursts: Vaccine Injury Program Hearings Postponed

By Cathy Jameson

My husband and I rearranged Ronan’s school, therapy and medical appointments as well as our own personal schedules in order for me to be available to go to the upcoming Congressional Hearing.  This Hearing was to address the Vaccine Injury Compensation Program  (VICP), its history as well as the waste, fraud and abuse stemming from that program.  Having taken part in the VICP on behalf of my son, it was important for me to make plans to be at that Hearing.

Since that announcement of the cancellation, in national news about vaccines I read that a healthy young man, who was battling for his life after getting the flu shot, died  this week.  I also read that the US is scampering to get a hold of an unapproved vaccine to students at an Ivy League college.  Personally, since the Hearing was cancelled, I learned that a friend’s mom landed in the hospital after getting a flu shot and that another friend’s son reacted negatively to a 3-in-1 vaccine. 

While the personal stories may not be earthshattering news for many, all of those stories frighten me.  They frighten me because another life has been senselessly lost, another life is in jeopardy and another person’s health has been changed forever.  Where are they to go when they link their ill health, that vaccine injury, or worse, death?  They’ll discover the VICP and how it proposes to help.  They’ll think they have answers, assistance and maybe some hope.  Too bad that the VICP is so broken. 

I know I am not the only one feeling worry, sadness or disappointment.  Many of us in the community were depending on some good news to finally come.  So, while we wait to get word about when the VICP Hearing will be rescheduled, because you know that people in our community are actively working to make that happen, I’d ask you to do a few things.  No need to sit and wallow in this disappointment, right?  It’s time for some action.

First, I want to ask you to review the video of the November 29, 2012 Hearing.   I think it’s important to do this because those people we heard last year are some of the same ones we’ll expect answers from when the VICP is rescheduled. 

You’ll recall that the Hearing last year saw a great many discussions about autism, including the role that childhood vaccines played in that diagnosis.  You’ll also remember that we saw Chairman Issa, who is also slated to oversee the VICP Hearing, lead a long-overdue discussion about what else needs to be done about autism.  Listen to everything that was revealed.  Think about how you felt when those Representatives’ words tumbled out of their mouths.  Keep those words in mind as you get ready for the next step. 

To Darrell Issa & Vaccine Injury Compensation Program: Meet Ronan Jameson

Committee on Oversight and Government Reform
Committee members
2157 Rayburn House Office Building,
Washington, DC 20515
Phone: (202) 225-5074 Fax: (202) 225-3974

By Cathy Jameson

Upon reading the Canary Party’s announcement that the Congressional Hearing, which was scheduled to discuss the Vaccine Injury Compensation Program, was cancelled with no postponed date announced, I penned Mr. Issa, Chairman of The Oversight and Government Reform Committee, this note.
--

Dear Mr. Issa,

This is Ronan.  This is Ronan post seizure.  His seizure were brought on by vaccine injury.  Today, his seizures are gaining in duration, frequency and intensity.  I fear what they will do to his health and possibly his life.  
 
Ronan is my ten-year old son.  He was injured by his childhood vaccines.  Thankfully we learned the devastating effects of vaccines when we did, but it wasn't before serious harm was done.  Ronan lost his voice, lost skills he was building and was left with seizures, severe developmental delays and other secondary illnesses that physically drain and affect his energy.  

When we discovered that the vaccines were responsible for the damage done, we enrolled in the Vaccine Injury Compensation Program.  We had high hopes that the program would recognize what was so apparent--that they did something to my beautiful, healthy baby boy.  


We fought for eight years, EIGHT YEARS.  We jumped through every bureaucratic hoop.  We provided documentation after documentations.  Medical records, expert testimony and more.  We believed in the system, but when a system was created by the government for the government's gain, of course people like my son can never get what was supposedly promised them.  After devoting years to this cause, Ronan's case was dismissed in July 2013.  Disappointed doesn't even begin to describe how we felt when we learned his case could go no further.

Fast forward to now.  In two weeks I was planning on being at the Congressional Hearing that would discuss the Vaccine Injury Compensation Program.  I already know about the major flaws that program has but remained hopeful that your committee was going to finally call them out on the flaws, the waste, the fraud and the abuse.  How incredibly disappointing it was to receive news that the Hearing was cancelled with no new date announced.  

Don't you think enough time has gone by?  

Don't you realize the dangers lurking if the VICP is not remedied?  

Too Much Too Soon Too Little Too Late: HPV Vaccine Safety Lessons

By Cathy Jameson

For years we’ve been bombarded with multimillion dollar advertisements promoting the HPV vaccine known as Gardasil.  Commercial after commercial, whole page magazine ads and posters at subway stations sent more fear than facts to the public about the human papilloma virus (HPV) and its role in cervical cancer.  

Even though I do not care for this particular vaccine, I make an effort to stay updated whenever news comes out about it.  I do this because my oldest falls into the age category for which the vaccine is recommended.  The vaccine, originally designed and heavily pushed on the teenage population, can be administered as early as 9-years old.  After a rather hasty vaccine “safety” study period, the 3-series Gardasil vaccine became available in 2006.  Cervarix, also marketed as a cervical cancer prevention vaccine, debuted in 2009 is an alternate to Gardasil.  

Like every vaccine that came before these two, reactions post-vaccination were documented and reported in the VAERS database (Vaccine Adverse Event Reporting System).  Currently, almost 32,000 adverse reactions have been reported as well as 144 deaths.  Despite growing concerns about Gardasil and Cerivax, and about the increasingly serious and fatal reactions young girls have had from them, it was suggested in 2011 that boys as young as 11-years old also receive the 3-shot series.  

During the campaign to sell, sell, sell this product, we were told that the HPV vaccine would be an answer—an answer to help prevent cervical cancer.  We were told those who got the vaccine would be One Less:  One Less to chance it.  One Less to catch the disease.  One Less cancer victim.  We were also told that 3 doses were recommended for the series to be effective.  Reports are now saying 3 vaccines may be two too many though.

Good news for less jabs, right?  

What, then, should we tell the girls, and now possibly the boys, who got sick from their 2nd dose of the vaccine?  Who tells them, “Oops, sorry.”

Mr. Congressman, We Need to Talk

By Cathy Jameson

I wrote and sent this to my Congressman last week.  I wanted to make sure he knew about the Congressional Briefing on the National Vaccine Injury Compensation Program and about the upcoming Hearing.  I haven’t heard back from him yet, but when I do, I hope it is a positive response. 

Hello, Congressman,

I have a 10-year old son who was vaccine injured.  Ronan's injury happened as we followed the recommended childhood vaccine schedule.  We discovered that not all vaccines provide benefits and that for my child, vaccines played a negative role in his development.  In this discovery, we also learned that our government set up a program to assist those who are injured by vaccinations.  Since we saw that Ronan’s injury correlated with his vaccines, we filed a claim with Vaccine “Court” in the National Vaccine Injury Compensation Program. Since that program was set up in the late 1980s under the Department of Human Health and Services, the US government has awarded over $3 billion to vaccine injured individuals or to the families of those who have died from a vaccination. 

The results of Ronan's injury were very clear to us.  They continue to plague him as well.  Ronan is non-verbal, has seizures, cannot use the bathroom on his own, cannot cross the street on his own, is in jeopardy of wandering, is enrolled in a special education program and requires one-on-one speech, occupational and behavioral therapy.  He has also been diagnosed with autism.

From our initial filing to Ronan’s case being dismissed in Vaccine Court, it took 7 years to get through the system.  Seven years!  Looking at Ronan, knowing his history, connecting the dots on his medical records from when he went from happy and healthy to very sick and severely autistic, it's clear that vaccines did something to him.  One can see the progression of the major regression.

Social Media, Autism Friend or Foe?

By  Cathy Jameson

I saw a notice posted in a doctor’s office a few weeks ago.  It wasn’t for patients but for the medical staff.  The topic was social media and how medical professionals can tap into it.  Someone would be speaking about helpful tips to know and use while on the web.  Rules of etiquette would to be shared as well.  How I wish I could have been there in attendance to hear what was going to be said! 
A Tweet, Pin, FaceBook post, YouTube video or Instagram picture.  Depending on who you’re following, or what you’re viewing, social media can give you a boost and a smile.  It can also get you into hot water. 

Social media.  Friend or foe?  For the autism parent with a vaccine injured child, I think it can be both. 

Is it necessary?

Absolutely. 

Why?

Because of how bombarded we are with one-sided information on highway billboards. 

Like this:

 

Because we’re presented with contradictory information. 

Like this: 

Cathy Jameson on Bullying and Vaccination

Age of Autism’s Cathy Jameson as Special Guest on the Know Your Rights Hour Radio Show with Dr. Mayer Eisenstein and Attorney Alan Philips

I was taken aback when I received an email from Dr. Mayer Eisenstein last Monday morning. I thought to myself, ‘Not the Dr. Eisenstein!’ I wondered before I opened the message.  Yes, the Dr. Eisenstein was emailing me.  He was offering high praise for my Vaccine Bullying article that had posted the day before.  He also was asking if I wouldn’t mind giving him 5-10 minutes later that evening to talk about the article.

Would I mind?  Not at all!  I wrote him back and said would be thrilled to speak with him. 
A few months ago I was a nervous nelly doing my first live television interview on Fox News.  Last Monday evening, in the comfort of my home, I found myself a much more relaxed special guest on Dr. Eisenstein’s live radio show.  The show, Know Your Rights Hour, is hosted by Eisenstein and Vaccine Rights Attorney Alan Philips, J.D.  It can be heard on BlogSpot Radio Monday evenings from 8-9 CST. 

I shared some of my past experiences in the doctor’s office and how I stood up to our doctors and nurses who badgered us about vaccinating.  I said that because of my being vocal about what’s happened to Ronan that parents reach out to me and want to know what they can do when their doctor bullies them.  We also discussed the tips I’d offered in my article. 

What a treat it was to speak to these two gentleman about something I am very passionate about.  I guess I had a lot to say because my 5-10 minutes of talking turned into being on air for the first half of the show!  If you missed us, you can still give us a listen.  The archives can be found on the Natural News Radio page.

Cathy Jameson is a Contributing Editor for Age of Autism.

What Autism Moms Deserve: Affordable Care Act Offers Little

By Cathy Jameson

“…[to] have the security we need…for ourselves and our families.” – First Lady M. Obama

A few Fridays ago, at the end of a week full of meetings and appointments, I spent the morning catching up on household chores I’d been neglecting.  I was able to get most of the cleaning, sorting and organizing done that I’d wanted to.  I had about 10 minutes to spare before I had to pick Ronan up from school, so I sat at the computer to catch up on emails and see what news was making the headlines.  A piece on Yahoo! Shine, featuring the First Lady and titled What Every Mother in this Country Deserves, caught my eye.  Being mom to five incredible kids, one of whom has severe medical issues, I opened the link to find out what it was that I deserved. 

Michelle Obama begins by telling a familiar tale many mothers have gone through:  taking a child to the emergency room.  She shares details of the event and the overwhelming emotion that came with the experience.  Those types of medical visits are very scary for many mothers, I know.  Ronan’s had several.  A few of his ER visits happened soon after his vaccines and later ones were complicated by autism. 

Michelle goes on in the article to say how grateful she is for immediate medical response for her daughter, something everyone hopes for.  Then, she begins her spiel.  It’s a plug for affordable healthcare.  With all that has happened to Ronan and how expensive his care has been, I paused.  Those two words, affordable healthcare, don’t usually go hand-in-hand when you have a vaccine injured child.  I was interested in what else the article had to offer though, so I kept reading. 

As I finished the article I appreciated that Michelle gave props to all moms who’ve faced similar E.R. situations.  I also like that she states that, “…Every mother in this country deserves this kind of security (i.e., affordable healthcare) for herself and for her family…”  I absolutely agree with that.   But what I don’t appreciate is that the article read like a pharmaceutical advertisement with Michelle as the “celebrity” shill.  Those types of advertisement and spokespeople tend to glorify only the good, the easy and what usually ends up being beneficial to only a select few. 
With the years of experience I have now researching all things medical, by the end of the article, I wondered, where is the fine print?  I depend on that information to help me make informed decisions. 

Knowing the fine print, and if it includes denials, out-of-network charges or out-of-pocket expenses, is what I’ve gotten accustom to dealing with.  Because I have faced unfortunate discoveries, and that our medical insurance will not fully cover a promising treatment (or Ronan’s name brand medication or the voice output device that will reduce behaviors or the on-going therapy he needs), I wanted to know what wouldn’t be covered by this too-good-to-be-true-sounding insurance Michelle was selling.  I wondered if the coverage and programs being promoting through the Affordable Healthcare Act (ACA) would actually help those with an autism diagnosis.  Would the plan fit children like Ronan—the “square pegs” who baffle and befuddle the nation’s top specialist and professionals?  Would the ACA pick up the legislative efforts that Autism Speaks  has started as they attempt to secure mandated insurance coverage nationwide for those with autism? 

On paper, the Affordable Healthcare Act is offering access to insurance for all—for people, including children, with pre-existing conditions and for adult children up to the age of 26.  I know of no other insurance company that compares with offering those types of benefits.  I had to admit that the ACA sounded like a good thing, especially for autism families!  But because some controversy has followed the development of this legislation since its inception, and because of the many complaints I’ve heard in the last few weeks that much higher deductibles and premiums will be the new norm, and because, honestly, curiosity killed this Cat, I took time after I got back home with Ronan to read more.  I wanted to learn and discern as much as I could

When I returned, I popped over to the HealthCare.gov website  to look not just at what Michelle said I deserved, but at what my son Ronan requires to live each and every day. 

As all good autism moms do, I hit the search box first.  My search list included:

autism
mitochondrial disease
behavior therapy
apraxia
speech therapy
occupational therapy
GI distress
seizures

What I discovered didn’t shock me.  What I discovered saddened and frustrated me instead. 
Autism:  Similar to my first hit, I opened this preventative care for children  link followed by this page .  Listed in the pdfs are typical childhood milestones.  Milestones are good to know, but with the rise in autism rates I had hoped to see that rate posted as well as a list of autism warning signs and a list of preventative measures most mothers I talk to want to know. 

Things to Know or Do When You’re Up Against a Vaccine Bully

By  Cathy Jameson

October is National Bully Prevention Month.  It is National Vaccine Injury Month. 

Ironic, no? 

Here are some recent vaccine-related news articles posted on the web during October:

High Court Orders Two Sister Must Receive MMR Vaccine

Announcing UK Government Considering Mandatory Whooping Cough Vaccine for Newborns

Flu Shots During Pregnancy Reduce Autism Risk

Could A Vaccines for PTSD Protect Soldier?

Gates Foundation Introduces Trendy New Bracelets as Ridiculous Marketing Ploy to Push Vaccines
---
My head spins when I see headlines like those above.  But, to the average reader, they may truly not know why some of the content of those stories are absolutely ridiculous.  The reader may not be aware of the many risks of vaccinating or realize how much money goes into this industry.  This happens when mainstream news refuses to offer both sides of the vaccine story. 

I get several phone calls and emails every month from parents asking for help when they see similar headlines in the news.  I get questions like:  What can I do when my doctor isn’t listening to me?  Why is my doctor bullying me about this?  What do I say if I don’t want all those shots?  What should I bring to the appointment to prove what he’s saying about vaccines and autism is wrong?  I let parents know that the best thing that they can, and should do, is to learn as much as they can.  I tell them to be ready to speak up when it’s time and to never forget it’s their child—not the doctor’s, that they are bringing into the exam room.  I also suggest to these parents to read.  Read. Read. Read. Read. Read.  And then read some more.  Knowledge truly is power, and applying that knowledge can be very powerful. 

In the past, the places I spend the most time discussing vaccines, vaccine safety and how autism is linked to vaccines occurs in an exam room with one of my son’s medical providers as well as on blogs, message boards and in the comments of web-based articles.  In the exam room, some doctors and medical staff are adamant about “No vaccines? No service.”  Fine! I say.  I’d rather take my children to someone else who actually respects them and their health.  It may be more costly to find a different provider, but their life is absolutely worth it. 

Online discussions about vaccines can be no different.  Depending on the vaccine topic or fact being discussed, reported or distorted, I’ve run into hostile individuals who refuse to hear me out.  “You don’t like them?  Conversation OVER.”  I learned the hard way that some people aren’t worth engaging.  Fortunately, the last encounter I had with someone online who rudely represented the pro-vaccine camp hasn’t had a repeat.  Easily I could have decided to never discuss vaccines online again with how negative that interaction was.  But I decided I wouldn’t walk away completely.  I can’t because those quietly witnessing the conversation later seek me out offline.  Not wanting to chime in directly, they ask questions behind the scenes and appreciate my perspective as the parent of a vaccine-injured child and ask for advice. 

New parents on the scene, the lurkers who’ve just made the autism-vaccine link discovery, are listening intently to those conversations.  Those lurkers are sometimes on the fence about the decision they face.  Some of them want solid answers and would expect them from professionals they trust.  But how do they trust someone who’s banking off of their medical decisions:  Should I vaccinate?  I think I might. Maybe not all at once though like my friend did with her kid.  He’s been so sick after all those shots and now has autism.  Doctors say the autism has nothing to the shots, but I know it wasn’t there before the shots.  What if I don’t vaccinate? My doctor keeps badgering me like I’m doing something wrong.  I hate it.  He always says, “You know your baby best…” and then hounds me to do what he wants to do.  He says my kids have to have all these shots, SO many of them, to get into school.  I called the school and they take vaccine exemptions, so why is my doctor pressuring me so badly?

New parents have questions.  New parents want answers.  What’s a new parent, or any parent for that matter, to do as they start asking what seems like an innocent question about vaccines either in the exam room or on the internet? 

# 1 – Do stay calm.  Online trolls love vaccine drama.  Pharma shills do too.  They get off on their wordsmithing, their debating skills and how much of your time they can waste.  If it’s in the exam room that you raise a question or concern, and if it’s an ill-informed doctor or pushy nurse you’re up against, be prepared well ahead of time with what you want to ask, say or point out.  Because your knowledge directly benefits your child’s health, stay calm, know your stuff and be ready to stand your ground.  Keep in mind that some practices benefit from doling out pharmaceutical products.  The more you know about where your doctor’s loyalty lies, the stronger you can be with the decisions or statements you want to make.

15 More Things You Need to Know About Vaccines

By Cathy Jameson

Fox News online posted a lengthy article on October 9th called 15 things you need to know about vaccines.  While the article could have been very informative, it had several flaws.  As the parent of a vaccine injured child, I not only have additional information, but also a different perspective on the subject and thoughts about who Fox News chose to answer their questions. 

Here are 15 more things I think you need to know about vaccines.

1.
Fox News’ Question: How Do Vaccines Work?

My Question: Where Would One Find Empirical and Unbiased Information About Vaccines?

From the Fox News article: 

“Vaccines (create special proteins) without making you ill.  Vaccines induce the protective immunity that is a consequence of natural infection, without having to pay the price of [becoming sick with] a natural infection," said Paul Offit, chief of the division of infectious diseases and the director of the Vaccine Education Center at the Children's Hospital of Philadelphia. Getting a vaccine is "like having a protective bubble that keeps viruses and bacteria from attacking your body," Offit said.

I have parents asking me questions about vaccines, vaccine safety, vaccine efficacy and the vaccine-autism link all the time.  Parents want to more information.  Parents of vaccine injured kids know many of the answers.  We want other parents to be as educated about vaccines and their child’s health so they can avoid an unnecessary vaccine injury. 

People usually come to me after they’ve sought advice from their medical provider.  While it’s a good start to ask their doctor for input, I let people know that they can continue to research on their own.  I like to get my vaccine information from journals and articles and from several sources.  I’ve learned a great deal from the National Vaccine Information Center and from the SafeMinds Coalition among other groups dedicated to educating people on vaccines and vaccine safety. 

Best of Cathy Jameson: No Rest For The Weary

By Cathy Jameson

Ring. Ring.   Of all days. 
 
Ronan was up at some ridiculous hour the last two mornings in a row.  All I wanted was some peace, a whole lot of sleep and for it to please come soon.  I’d just returned home from dropping off my children at school.  If I was going to survive a full day, and another possible night of no sleep due to Ronan’s frequent night waking, I had to grab that quiet moment now. 
 
Ring. Ring.
 
Crawling back into bed praying for rest in the form of a nap, I groaned.  I usually turn the ringer off if I get the chance to go back to bed.  Obviously I was too tired to remember to do that this time. 
 
Ring. Ring.
 
I recognized the phone number and knew I couldn’t ignore the call.  Forcing myself to perk up, I hoped I didn’t sound like the exhausted half-human I felt I was. 
 
 “Hello?” 
 
“Mrs. Jameson?” a woman on the other end asked.
 
“Yes, this is.” 
 
“This is the nurse at Ronan’s school.”  Drat.
 
I was wide awake.  The nurse continued, “I was looking through Ronan’s files, and I see that he did not get the varicella vaccine.”
 
Double drat! 
 
I replied, “Yeeesss?”
 
The nurse continued, “Well, I need to tell you something.”
 
Ugh.  I was sitting up in bed.  Naptime over.  My mind raced as I reached for my imaginary mother warrior boxing gloves thinking, You wanna talk vaccines?  Bring it, sista.
 
“I’m listening,” I tried to say casually.
 
“Well, we have two cases of chicken pox here at school.  Ronan didn’t get that shot, so if you think he might be exposed you can come pick him up.”
 
I almost laughed.  How quickly I put myself in the vaccine boxing ring ready to put my dukes up!  I waited a second before responding.  “Oh, wow.  Thanks for calling.  You know what though?  Ronan had the chicken pox.  He caught it naturally a few years ago.  So….he doesn’t need the shot, and he should be fine.” (Please, oh please, oh p-l-e-a-s-e say that he can stay at school today because I really need to take a nap.) 
 
The nurse said, “Oh, wait. I think you did tell me that.  Yes, now I remember. Okay, then.  It’s been a really busy morning.”  I thought, I bet it has!  Chicken pox is no picnic.  I was guessing she was in damage control mode rifling through hundreds of other kids’ files trying to see who was and wasn’t vaccinated, and who might be susceptible to catching the chicken pox.

Ring. Ring.   Of all days. 
 
Ronan was up at some ridiculous hour the last two mornings in a row.  All I wanted was some peace, a whole lot of sleep and for it to please come soon.  I’d just returned home from dropping off my children at school.  If I was going to survive a full day, and another possible night of no sleep due to Ronan’s frequent night waking, I had to grab that quiet moment now. 
 
Ring. Ring.
 
Crawling back into bed praying for rest in the form of a nap, I groaned.  I usually turn the ringer off if I get the chance to go back to bed.  Obviously I was too tired to remember to do that this time. 
 
Ring. Ring.
 
I recognized the phone number and knew I couldn’t ignore the call.  Forcing myself to perk up, I hoped I didn’t sound like the exhausted half-human I felt I was. 
 
 “Hello?” 
 
“Mrs. Jameson?” a woman on the other end asked.
 
“Yes, this is.” 
 
“This is the nurse at Ronan’s school.”  Drat.
 
I was wide awake.  The nurse continued, “I was looking through Ronan’s files, and I see that he did not get the varicella vaccine.”
 
Double drat! 
 
I replied, “Yeeesss?”
 
The nurse continued, “Well, I need to tell you something.”
 
Ugh.  I was sitting up in bed.  Naptime over.  My mind raced as I reached for my imaginary mother warrior boxing gloves thinking, You wanna talk vaccines?  Bring it, sista.
 
“I’m listening,” I tried to say casually.
 
“Well, we have two cases of chicken pox here at school.  Ronan didn’t get that shot, so if you think he might be exposed you can come pick him up.”
 
I almost laughed.  How quickly I put myself in the vaccine boxing ring ready to put my dukes up!  I waited a second before responding.  “Oh, wow.  Thanks for calling.  You know what though?  Ronan had the chicken pox.  He caught it naturally a few years ago.  So….he doesn’t need the shot, and he should be fine.” (Please, oh please, oh p-l-e-a-s-e say that he can stay at school today because I really need to take a nap.) 
 
The nurse said, “Oh, wait. I think you did tell me that.  Yes, now I remember. Okay, then.  It’s been a really busy morning.”  I thought, I bet it has!  Chicken pox is no picnic.  I was guessing she was in damage control mode rifling through hundreds of other kids’ files trying to see who was and wasn’t vaccinated, and who might be susceptible to catching the chicken pox.

Combatting Autism

By Cathy Jameson

After a particularly difficult week, I knew I needed to make some changes.  The biggest change would be about my attitude.  It was going to be hard because reminders of why some things are difficult stare me in the face daily.  Some of the reminders have me ping ponging from feeling overwhelmed to feeling depressed.   The extra stress I carried last week made me want to give up on some of this fight.  Not on the fight I will always have to help and protect Ronan, but the fight that inevitably comes while attempting to educate other people on vaccine history, safety and injury. 

While trying to contribute the real facts about vaccines with some people, many of whom have become increasingly insulting the longer the dialogue continues, I came close to walking away.  I wanted to be done with it and with future conversations too.  I threw my hands up in the air and thought it’s not up to me to educate anyone, so why do I try so hard.  I’ve been told before “do not engage” and “it’s pointless” and “they’ll just get you all riled up, Cat”.  True to form, their same old arguments were indeed pointless, and I did get riled up.  I forgot my own advice and regretted engaging with these folks.  They proudly hail from narrow minded and one-sided pro-vaccination camps.   But something caught my eye.  It nagged at me and made me want to come back.

Midway through the discussion, new people chimed in.  People I hadn’t expected responded.  People who didn’t have kids yet but wanted to know why the fuss about vaccines.   People asking why some groups insist that vaccines are a gift to mankind while other groups politely caution the use of them.  These people offered a thought or two.  They were genuinely interested and clearly following along the conversation.  Then they began to ask questions.  Questions that made the conversation continue and that brought other people in as well.

I stuck around.  I shared my thoughts and linked websites.  These folks admitted that while they don’t like the vaccine schedule, they felt like they were unable to do much about it.  They didn’t know that public schools still have to admit students who choose to not follow the recommended schedule.   They didn’t know that vaccines haven’t truly been studied like the news and some government agencies want us to believe.  They didn’t know that with vaccine use, comes vaccine injury and death.  They didn’t know that our own government has paid out over $2.7 billion dollars to those who’ve been adversely affected by vaccines.  They didn’t know it only takes only a few minutes on a few websites to verify all of that and that they could easily start to search out the truth for themselves. 

I was taken aback when the conversation turned as these new people chimed in.  They reminded me of myself when I first learned about vaccines.  I was that ill-informed person.  I was that scared new parent.  I was that person who did not know I had rights.  I was also that constantly-wondering-what-if type of mom.  What if I do vaccinate?  What if I don’t?  What if he gets chicken pox naturally?  What if he doesn’t?   What if the vaccine doesn’t work?  And, wait just a minute.  Why does he need a booster if vaccines supposedly work so well? 

The End?

By Cathy Jameson

Just when I think I’ve helped everyone I thought I could, I haven’t.  Not that it’s my job, or that I get paid to help others; it’s just part of my nature to help, especially when the other person is a mom.

I ran into a woman last week who’ve I’ve known just for a little while.  Her kids are typical.  Or so I thought.  The more time we spent together the more I realized, no, her kids sound like mine.  Mine are not as typical as I imagined they could be—one has severe developmental delays and autism.  Two were speech delayed.  Three were vaccine injured. 

The longer we chatted, the more this other mom and I shared the same vocabulary:  therapy, vision issues, sensory needs, auditory integration, calming and self-regulating techniques.  All this time I wanted to be more like her, but she was just like me: a mom working feverishly to give her kid what they needed to be able to function in the world. 

Hearing that her child had struggles hit me hard.  I had no idea.  In past brief encounters I assumed she was bathing in “typical” parenting, and yet, she was struggling just like I do.  It humbled me.  In the same instant, it crushed me. 

Just when I think I can handle all that I encounter…

Just when I feel I have been completely beaten down emotionally…

Just when I think surely no more children are suffering like mine have…

It felt like my world was caving in.  To hear that another child shared the same story and similar struggles as some of my children do, how did I miss that? 

Was it because I was too self-absorbed and knee-deep in my own thoughts? 

Was it because I can’t be all and do all for everyone even though I want to?

Was it because this other parent hadn’t put two and two together yet like I and many of my friends have? 

Was it because this parent has kept their head in the sand about what’s contributing to their child’s problems?

Or was it because they’re afraid of confirming what they do know but haven’t yet found the courage to confront it? 

All Puckered Up

By Cathy Jameson


This week was more tiring than previous ones.  We’ve returned to a more structured routine with the start of Ronan’s new school year.  As busy as I know we’ll be, I couldn’t wait for school to begin.  I didn’t realize how much I needed structure until we didn’t have it over the summer.  Ronan needed it, too and has done well transitioning back with his dedicated team.  Every day, Ronan’s come home happy and with good reports.  He’s been in good shape each afternoon and even surprised me with how alert and active he was as we neared the weekend.  I, on the other hand, have been worn out. 

By the time my kids come home from school I’m ready to for bed.  I haven’t gotten used to setting the alarm each morning, and unfortunately, I wake up cranky wearing the face of a sourpuss.  Mornings and I don’t do well.  Afternoons suddenly don’t agree with me either.  It now takes an extra cup of coffee during the day to feel like I’m able to function among the living.  Midweek I snuck in a nap (alright, two naps) hoping to get a bit of rest to survive the entire week.  I didn’t realize how much energy it was going to take for me to get back into the swing of things.  Ronan has made it look so easy! 

Ronan didn’t slow down at all, and in fact, was keeping up with all of his therapy and school demands.  When Friday came along, even though Ronan looked alert and showed no signs of distress, I knew not to push him too hard.  One too many activities can throw him over the edge.  Not this week though.  And, on Friday afternoon, just as we were wrapping up his last bit of an after-school therapy appointment, I thought Ronan’s full and physically taxing schedule would finally catch up with him.  It didn’t.  Instead, he showed me a new skill.  It was so big and wonderful that it took my breath away. 

Ronan finished his session early and walked over to where I was in the hallway.  He signed, ‘Mom, Wii bowling please yes’ with the goofiest grin.  Ronan had worked incredibly hard all week and deserved some extra time to chill out.  I looked at him and said, “Sure, Buddy! Let’s say goodbye first.” 

Ronan and I sat on the steps near the front door and waited for his therapist to pack up his things.  Tucking his arms in so I could cuddle him, Ronan sat in my lap and snuggled.  We sat quietly together for one minute, two minutes…three.  I loved that he slowed down enough to want to be held.  As we sat, Ronan gazed into my eyes.  Ronan can make eye contact but doesn’t always sustain it.  This stare was different and felt like it was going to last forever.  It also felt like Ronan was about to say something.  Not wanting to lose contact, I said, “What a love you are!  You are so snuggly today.  Mommy is really proud of you.” 

Autism Mom and Cover Girl! Autism File Goes Digital.

We're happy to report that you can now download Autism File Magazine free.  Simply click THIS LINK to start your subscription. 

The Autism File, the first magazine ever published devoted exclusively to Autism Spectrum Disorders, announced today that the upcoming August/September issue will mark the magazine’s entry into the world of digital publishing.

Since the first issue of the magazine appeared in 1999, the Autism File has been described by readers as a “lifeline”.  “Thanks to the most knowledgeable experts and experienced parents from around the world, we’re able to present cutting-edge content and critically needed support to families affected by autism,” said the magazine’s founder and Editor-in-Chief, Polly Tommey.  “The new digital format will allow parents and professionals—no matter where they live—to have immediate access to the crucial information provided by our contributors.”

In addition to the magazine’s bi-monthly publication, which will be available as a free download six times per year, the Autism File’s team of editors and writers will provide a weekly update focusing on relevant topics including nutrition, biomedical treatments, sensory issues, advocacy, and safety.  “There is an overwhelming number of concerns that autism families face each and every day, and often on incredibly tight budgets,” said Polly.  “Our readers will now have the latest innovations and strategies for all aspects of living with autism right at their fingertips, and at no cost.”

Our own Cathy Jameson is this issue's cover girl - along with her handsome son Ronan.  once you have subscribed, (see link above) you can read Cathy's article titled Navigating the System to learn about the IEP process.

I Will Wait

By Cathy Jameson

We haven’t had the best summer.  The kids have been sick on and off since June.  A reliable care giver left us for another job.  One of our cars was on the fritz.  The central air conditioning unit bit the dust.  Other things, like the fact that Ronan now refuses to walk into one of his therapy places, cause frustration.  Delays, increased stress, and bearing the weight of intense negative moments have me questioning my sanity.  When some of my kids start school next week, I will be somewhat ecstatic and totally relieved to start a better routine. 

While this summer had more stress than relaxation, the kids’ vacation from school wasn’t a wash.  We made some new friends.  We celebrated several birthdays and anniversaries.  We had fun family time.  We got to be lazy when everyone else was scampering to early-morning summer camps and jetting out of town on expensive vacations.  The positive experiences this summer weren’t as frequent, but one in particular brings the biggest smile to my face.  It came last week on a day that Ronan wouldn’t leave me alone.  

Desperate for just five (consecutive) quiet minutes to myself, Ronan wouldn’t have any of it.  He was in constant search of me.  And as soon as he found me, he glued himself to my side making sure I stayed close to him.  This seeking me out isn’t unusual.  The fact that he wanted me to join him was.  Ronan is typically a loner.  He prefers to be on the outskirts of the room doing his own thing while the rest of us carry on with whatever it is we’re doing.  For the most part, while his siblings are playing, Ronan is either observing them or doing something quiet a safe distance from them.  Since Ronan doesn’t stay put for too long and needs constant watching, I sometimes have limited time to complete a task in one sitting.     

Thursday of last week was no different of what’s become of our daily summer routine.  The big kids were playing together while Ronan chose to play Wii.  He learned how to play Wii appropriately a few months ago and is quite good at some of the games.  He especially loves bowling and will stay at the game for a good stretch of time.  I knew Ronan was safe and happy, so I sat down thinking I had time to catch up on some reading.  I really needed the break before I had to get up again to make dinner. 

Not that I was hiding, but I was hoping to do absolutely nothing for just a little bit.  Within seconds of sitting down, Ronan found me.  He needed something, so I got up.  He held my hand and guided me to where he was playing Wii.  I checked the unit.  It was working fine.  “Nothing broken.  See,” I said pointing to it.  “It works.  Try it again, Buddy.” 

Ronan handed me the remote control and insisted I keep it.  I tried to hand it back but Ronan wouldn’t reach for it.  I pushed a few of the buttons on the remote and saw that the blue lights lit up.  Console works.  Batteries work.  Huh.  What could be wrong with it, I wonder, unless….OH! 
“Ronan, do you want ME to play?!”  He signed ‘yes’. 

Autism Parental Input

By Cathy Jameson

Bright Lights in the Big City

Last Monday evening I got a call from my friend Megan Davenhall who is also known as Sunshine from The Thinking Moms’ Revolution.  Sunshine was asked by Fox News to go on air and give her reaction to the induced labor-autism study.  Unable to go, she asked if I might be able to jet up to the studio to be on the evening news.  While still on the phone getting details, I whispered to my always-supportive husband what the call was about.  He encouragingly smiled at me and said, “Go!”  I have no prior television experience.  Heck, we don’t even have cable TV anymore!  I felt a little out of touch but was excited to see what was in store.  I thought what have I got to lose?  I’ve already been so vocal about Ronan and our situation; this will be one more chance to tell people what I know about autism.

I said to Sunshine, “Sure!  I’ll do it.”  Had I known how nervous I would be just a few hours later during the interview, I would’ve quickly hung up and hidden under a blankie instead!  I’m glad I didn’t run and hide.  As nervous as I was (and, oh boy, was I nervous), this opportunity was important. 

I knew I needed to do some major prepping for what I just signed up to do and only had just over an hour to do it.  I made a quick call to Fox News and told the fellow putting the segment together that a Thinking Mom was available to go on air.  I got more details about what the piece was about too.  Fox News’ reporter, Shawn Yancy, who is also an autism mom, was going to showcase the autism-induced labor study in the 10 o’clock health news segment.  Could I share my thoughts on that?  I laughed and said, “Oh, yeah, I saw that go through my news feed.  I usually read everything I see about autism, but I didn’t open that link.  I thought to myself, ‘Another study?  Really??  What’ll it be this time?’  My contact at the station pressed if I’d be available.  I confirmed I could and hung up.     

While I got dressed and ready to go, my husband read through the study and wrote some notes for me.  I joined him moments later and sat down at the computer to do some reading.  Together, we found more information and saw that this particular study was drawing a great deal of national attention on several news sites, including ones we trusted and on quite a few mainstream ones as well. 

With notes in hand, we went over key talking points.  Since I hadn’t yet been given any questions that the reporter would ask me, I made sure to jot down general information on autism as well as news from other recent studies.  Not having done too much reading on induced labors, I wanted to verify that process and that induced labor requires chemical assistance.  I already knew that, when any kind of toxic goo is added to the body burden, the immune system can be suppressed.  The GI tract can take a hit.   A toll can be placed on the neurological system.  I assumed that once induction starts, risks immediately do too. 

I felt like I had a good idea of what could be presented but wanted to get some input from those who’ve sat in the hot seat before.  I made a quick call to Kim Stagliano.  She offered sage advice and boosted my spirits.  Once we hung up, Kim put the word out that I’d be on the news which prompted an encouraging call from AofA’s Media Editor Anne Dachel.  She too wished me luck and reminded me of something I hadn’t thought of.  This study, as with a string of others, puts blame on the mother.  Ah, yes.  Another tactic to dodge the truth and make mommy the bad guy. 
With only ten minutes left before I needed to get on the road, I reached out to a friend who is well versed in the subject of pregnancy, laboring and babies.  Brandy Burd has ten year’s experiences as a doula and serves the Virginia Beach, Chesapeake and Norfolk cities in Virginia.  From her website, “As a birth doula, my goal is to help mothers educate themselves on their options for childbirth, and provide the physical, emotional, and informational support they need to achieve what they define as a positive birth experience.”  I knew Brandy would be a fantastic source for me in the final few minutes I had left to cram for the interview. 

What I gathered from our conversation is that inducing labor could indeed be medically necessary in certain situations, but allowing for a natural birth should be considered first.  Some reasons a doctor may suggest an induction are when the mother is experiencing pre-eclampsia, high blood pressure, diabetes, multiple complicated pregnancies and when the membranes rupture but the next stage of labor is grossly delayed as that can put the baby’s health at risk. 

Full-term pregnancies typically range from 37 – 42 weeks.  Forty-two weeks may seem like a long time, but women can and have safely labored up through then naturally.  Despite that fact though, some clinics promote induced labor as a “standard management” practice.  Some reasons for non-medically necessary inductions are:

*for social reasons (inducing because parents wish to have the baby on a certain date)

*due to maternal age (inducing because a woman is “older”)

*for convenience to the provider (inducing around his/her schedule or time off)

*for convenience to the hospital (inducing scheduled during the day when more staff is available)

*for convenience to the pregnant woman (inducing because she may be tired of being pregnant or because she wants a smaller baby) 

When considering birthing options, taking note of the woman’s health, the type of pregnancy she’s had as well as the baby’s development is of utmost importance.  To needlessly schedule an induced labor could actually cause serious complications for both mom and child and what Brandy referred to as the Ripple Effect.  This means that when one intervention is started, another is likely to be added in order to offset an unexpected outcome or unforeseen complications from the procedure.  More drugs, some with increased negative side effects, are added next. Those, as well as other invasive actions, can add stress and physical strain to the laboring process.  Instead of a let-nature-takes-its-course approach, or allowing mom to trust her body, both mom and baby are hooked up to drips and monitors and have less mobility to move through the labor pains. 

Cathy Jameson On Labor Induction and Autism on Fox 5 DC

Thank you to Age of Autism's Cathy Jameson for her appearance on Fox 5 News DC last night to discuss the recent news that inducing labor could be related to autism.  Cathy is a co-contributor to book The Thinking Moms' Revolution.  And our favorite Sunday read here at AofA. Great job, Cathy.

http://www.myfoxdc.com/video?&clipId=9191960&autostart=true#axzz2bqZvHrkZ

DC News FOX 5 DC WTTG

Shock and Autism

By Cathy Jameson

I try to stay as current as I can on autism topics and how they relate to Ronan’s situation.  As I read, I’m exposed to the God-awful truth.  Despite how much it sometimes hurts to learn what I’ve had to discover, I keep reading. 

Not everything I’ve seen has been useful though.  Sometimes I run across fluff pieces pawned off as the Gospel truth.  This happens more than it should and occurs in more sources than I’d expect:  magazines and books, on the internet and across the pages of newspapers worldwide.  Apparently, the more sensationalized and inaccurate a piece is the better.  

A few months ago I wrote a piece about an in-your-face  advertising concept I’d heard about on the radio.  Many of us in this community have used ‘in-your-face’ writing to get our point across for some time.  What if we added images that are visually honest also?  The other side gets to sensationalize how safe and effective their products are in their high-dollar advertising programs.

So why can’t we, too, with our stories?  I’m not saying that we would glorify what’s happened to our children.  We’d continue to be 100% factual and add pictures that correspond to what our kids have had to bare—an unfathomable burden that came as a result of what’s been claimed as safe, but is rather, undeniably ineffective.   

What if? 
 



Not a pretty picture, huh?  

Reality Check

By Cathy Jameson

Ronan has a vaccine injury, mitochondrial disease and seizures.  He can’t talk or use the bathroom on his own.  He can’t be left unattended or perform typical daily living skills.  Ronan requires a special diet, round-the-clock care and a team of professionals to teach him.  He has another team to medically treat him and to support him.  He’s a severely affected child.  I’ve known all of this for a long time now, but nothing could prepare me for a day like last Thursday.  That’s the day Ronan’s adaptive stroller arrived.  The stroller, while it will be very useful and will allow Ronan to see more of the world, is a reminder that he remains very dependent and sometimes, very weak.  Ronan just can’t keep up like other children can.  

When I was growing up in the 1970s and 80s, I knew only of a few children who had as severe issues as Ronan does.  Poor neurological developmental cases were not among them.  One boy in my K-8th grade elementary school was physically disabled and used a wheelchair.  A friend’s younger brother had gross motor delays and needed physical therapy.  Out of everyone I knew or knew of, only one child’s issues demanded intensive, long-term medical care.  Don’t get me wrong.  Other kids that I knew needed care or equipment and were in and out of the doctor’s office.  But more times than not, the equipment were crutches, and the doctor visits were to treat broken bones or get stitches after a hard day of play.  Their pain and medical management was temporary.  Children’s health forty years ago wasn’t fragile like that of today’s generation.  And unless they were being hidden, cases of severely affected children were drastically fewer than what exist today. 



As I stepped into adulthood in the early 90s, I prepared for my career in the education field.  Only then was I introduced to children like Ronan.  While real, these children were unknown to me personally.  They were highlighted in case studies that I was assigned to read in journals found on the shelves of my college library.  These children and their diagnoses were quite rare.  So was the number of cases of them.  Fascinated by how out-of-character their significant struggles and troubles were compared to children I encountered in my childhood, I felt sympathy for their parents.  It wouldn’t hit me until after Ronan’s diagnosis in the mid 2000s what those parents went through.

Lady of the House

By Cathy Jameson

“Wrong number,” I replied. 

Every few weeks someone calls the house looking for a woman named Rosa.  I can tell right away that it’s either a telemarketer or a collection agency.  Sometimes it’s a recording for Rosa to please call the 1-800 number back.  Other times when I’ve pick up the phone I recognize a fuzzy sound in my ear and think uh, oh.  The low sound with a bit of static muffles some of who I know is in the background.  It’s the distant chatter of hundreds of operators sitting in a call center.  That sound is a tell tale sign that comes with a knee-jerk reaction--don’t breathe; they’ll know I’m alive and will think they can start talking to me.  The lone operator assigned to track Rosa with my phone number is relentless despite the “wrong number” responses I’ve given in the past.  I’ve adopted a new strategy when I hear that muffled noise as I pick up the phone:  hang up quickly.  It saves me more time.

The last call I got caught me off guard though.  I answered the phone thinking it was a friend.  I waited a few seconds after I’d said hello and realized the call wasn’t for me.  It was for Rosa.  I decided not to hang up right away and answered again with a long, drawn out, “H-e-l-l-o???”  The collection agency was once more trying to get a hold of Rosa.  Using one of their underpaid, irritated automatons pretending to sound chipper I heard, “Good morning!  May I please speak to Rosa?”  I replied, “You have the wrong number,” and politely tried to hang up.  Cutting me off the operator said, “Ma’am, are you the lady of the house?”

I had to laugh.  Lady of the House.  What a catchy title!  It reeks of regality and privilege.  I pictured myself lounging, completely lazy and fully catered to by wait staff on a lovely afternoon.  I saw myself sitting poolside with a tasty adult beverage in hand.  What fun!  Too bad for me though.  It’s so not how I really am or really see myself, my situation or my home.  Frumpy, exhausting and a tad on the disorganized side describes me and what’s going on around me.  This was especially so on the morning of that call. 

If I were the Lady of the House I surely wouldn’t be answering my own phone.  I’d have someone else do that.  I certainly wouldn’t still be in my pajamas at 10am eating cereal with a plastic kid’s spoon.   I definitely wouldn’t have driven my children to school in those pajamas either.  But I did.
“Ma’am?” 

Back to the phone call.  “Are you the lady of the house?”  I paused long enough to envision myself this time being pampered in a mansion sitting atop an impeccably landscaped lawn at the edge of the ocean.  Stammering I said, “Lady of the house?!  Nope, but thanks for that thought.  You have the wrong number.” 

This call was turning out to be entertaining.  I didn’t want to hang up as quickly as I usually do, so I added, “Rosa doesn’t live here.”

I stayed on the line wondering what would come next.  Clearly tired of making calls for someone else, the operator sighed and asked again, “So, you’re not Rosa?  We need her to contact us about her account.  Do you know where she is? ”

“Nope,” I sputtered as I crunched through my gluten-free Koala Krisps hoping to at least finish breakfast before it was lunchtime.

The disgruntled debt collector pressed, “Do you have the authority to make decisions for the household?”

I almost choked on the next spoonful. Obviously the operator clearly hadn’t heard that Rosa isn’t here, nor was she ever, and I don’t give a lick about her debt since I have enough of my own to worry about.  “Okay, I’m going to hang up now.  You have the wrong number….”

“But, do you have authority to make decisions…”

Click.

IACC: Wendy Fournier of National Autism Association on Wandering

By Cathy Jameson

The most terrifying night of my life was the night my son Ronan wandered from our home.  Knowing that he has a “taste” for the great outdoors now, I’m more hyper-vigilant than ever to keep Ronan safe.  To do that, I check every lock, window and door of our home multiple times a day.  I check, recheck and check them over and over again.  Ronan does this, too but for a different reason.  Just as many times as I glance up to make sure that the alarm units are activated and that the out-of-reach swing locks are locked, Ronan also looks up.  But he’s not looking to see if the locks are locked; he’s looking to see if they are unlocked.  Despite his delays and limitations, Ronan is incredibly smart.  Nothing gets past the kid.  Nothing.

I try to stay educated on wandering initiatives and what other families are doing about it.  I do this because we face a potentially grave situation should Ronan leave the house again.  So, when I heard that Wendy Fournier would be speaking as part of the Interagency Autism Coordinating Committee (IACC) panel on the subject of wandering at the July 9^th meeting, I made sure to tune in. 

Wandering, also known as elopement, fleeing, bolting or running, is a common behavior or response for some people on the autism spectrum.  The IACC has discussed it for some years now.  Not surprisingly, the more they sit and talk about autism and wandering, the higher the fatal incidents seem to be.  I believe that it’s time to end discussions about wandering and really act on it. 

With another panel on the committee’s agenda, I’d hoped the presentation and commentary on this increasingly fatal issue would be powerful.  Wendy Fournier stepped up and provided just that.  Wendy, President and founding member of the National Autism Association (NAA), and the entire NAA group has done a great deal of work to bring wandering awareness to the public’s attention.  They have worked tirelessly to also do something else:  to prevent wandering. 

While listening to Wendy speak about this very important topic, I went from cheering her on to breaking down in tears.  Each night this week, I’ve been trying to re-watch the archived video as well as read through the slides Wendy used because I wanted to highlight her presentation.  I can’t get through it though.  Sitting alone in my office as I slowly click from one slide to the next and see the images of those we’ve lost too soon was too much.   I’ve sat frozen at the computer night after night unable to see, think or write.  Each child, each story and each unfortunate death was emotionally overwhelming and brought me back to that dark, winter night when I temporarily lost Ronan.  Tying to take notes through the tears wasn’t working.  I just couldn’t finish it.

Not Much Happened on the Way to The (IACC) Forum

By Cathy Jameson

Last week, after listening to the Interagency Autism Coordinating Committee’s (IACC) meeting—but minus those in attendance who tirelessly offered their insight and efforts to treat and prevent the ever-growing autism epidemic, I walked away quite upset.  I shouldn’t have expected much, I know.  But, if you’ll remember I’m a dreamer.  I’m a hoper.  Most importantly, I’m a Mom who wants the help others avoid the negative side of autism—the kind that severely affects my son. 

So, against my better judgment, I gave the IACC another chance.  And why shouldn’t I; they claim they exist to help.  The IACC is “…a Federal advisory committee that coordinates all efforts within the Department of Health and Human Services (HHS) concerning autism spectrum disorder (ASD). Through its inclusion of both Federal and public members, the IACC helps to ensure that a wide range of ideas and perspectives are represented and discussed in a public forum.” 

The IACC was established in 2006 when the autism rate was 1 in 110.  It came about with the enactment of the Combating Autism Act.  The key word in that sentence: combat.  Unless they’re using a different dictionary, combat means to fight against or to do away with.  With that in mind, you’d expect the agency, would actually work toward not just addressing but doing something about autism and its rising rate. 

Instead, meeting after meeting, and for far too long now, it feels like the IACC is still merely just talking about autism.  Anyone can have a conversation about autism.  I do on a daily basis.  But when I talk about it, I’m giving tips to parents on how to prevent it.  I’m sharing ideas with a therapist on how to treat it.  I’m also participating in action alerts on how to support practical changes to make affected children’s lives better.  I’m sharing real experiences peppered with practical solutions.

When I talk about autism I’m not tiptoeing around hoping no one will notice how much it’s been ignored.  I’m not suggesting wasting valuable dollars on more uninformative research.  I’m not citing inaccurate statistics, skewed by fraudulent individuals who are doing their damndest to cover up an epidemic that didn’t have to be.  I’m not dismissing the pleas being voiced by thousands of frustrated parents.  I’m not writing off the useful answers, advice and professional opinions of those in the trenches who truly know autism.  And I’m not creating more committees and subcommittees to talk about unnecessary data about autism.  I, unlike the IACC, am making an effort to combat autism.  They, for reasons that I am unsure, are not.  

You’d expect the experts who sit around the IACC table to do more than just consider what their invited guests and speakers have offered.  You’d hope the people who sit on such a committee could be the ones who’d crack the whip.  You’d even expect them to get something done.  In searching for why they haven’t, I gave a hard look at the IACC’s mission and at who they’ve chosen to sit around the table.  In doing this, I discovered I have less respect, expectations and hope for the committee.  Why?  After Wednesday’s deplorable meeting, I realized that the IACC doesn’t exist to prevent autism like I’d initially thought. 

Dependence Day

By Cathy Jameson

The Fourth, which is usually a celebratory day for me, wasn’t a happily, hopefully ever after kind of day this year.  I had to forgo several of the day’s festivities because my youngest wasn’t feeling good and because of Ronan.  I’d been looking forward to the holiday and spending time with my family just like scores of other families would be doing.  Not wanting to point a finger at the kid, but Ronan, and how he simply cannot handle events such as the ones I wanted to attend, kept us stuck at home. 

I scowled.  I did.  I did more than scowl too.  I got really upset.  Resentment fell over me as I recalled how, many years ago, we were able to go out as a family.  Ronan was able to, and actually enjoyed those outings.  We did it all:  lunches, dinners, park dates, church as a family and even road trips!  We did all that once before.  Now?  Unless it’s an appointment or therapy, we’re parked at home more often than not.

I don’t like it when we have to separate our family.  Some of my kids get to do a __(super fun activity)__ with one parent while the other parent stays home with Ronan.  Making the decision to separate has become more common as of late.  Of course, whenever there is something to do out in town with Ronan, we assess the situation in the hopes that we can all do something together.  Sometimes we can.  Other times, it’s just not possible. 

Balancing my wants and Ronan’s needs has become greater this summer, and I’m finding myself struggling more and more with it.  On Thursday, knowing I’d be home with Ronan, I thought to myself, does taking a chance on bringing Ronan out into the crowds on a hot day with thousands of potential triggers worth the few minutes I might enjoy (while trying not to worry about Ronan’s dietary restrictions, wandering potential and the other what ifs that come with going out)?  Does it matter if I get to watch the fireworks light up the sky with red, white and blue?  Is it worth it to be upset if I miss this or if he misses it? 

I could feel my resentment grow.  The answer to those thoughts could all be yes.  But the longer I thought about them, the answer to all of them was a big fat no. 

As quickly as I allowed myself to be upset, I had to let it go.  I needed to because being disappointed about missing an afternoon get together leading up to a 15-minute fireworks display is just a blip on the radar of my life.  And it pales in comparison of what Ronan and I could do with our day instead. 

Breaking Point

By Cathy Jameson

About two weeks ago I decided I needed to take a break from my online activity.  While it’s “my link to the outside world”, being online is also a major distraction and excuse for much of my procrastination.  I allow other’s stories, concerns, and posts invade my private time.  Worse, I let it creep into some of my mothering time. 

My kids, who are home all day now on summer vacation, know I get easily sucked into message boards.  They’ve started to take advantage of how quickly I get distracted as I click, click, click half a morning or afternoon away.  When I noticed they were beginning to slip into their own avoidance habits, like playing Minecraft instead of keep up with summer reading, or turning on the TV to catch up on 1 or 2 (or 4!) cartoons, I knew I had to not just curb my distractions; I needed to make them go away completely.  I was going to test myself for a spell and say no more.  Internet, be gone! 
The day I decided to take a break from the World Wide Web wasn’t the day I temporarily shut it down though.  I needed to get one last fix.  I surfed and surfed until I felt like I’d clicked through enough articles.  Then it was time to walk away.  It’s funny that I felt like I had to gear up to go dark and that I gave myself permission to give up something no one is requiring of me.  That shows you how addicted to social media I have become. 

The first day of avoiding Facebook, some Yahoo boards and my daily go-to autism news sites was a challenge.  What a terrible habit I have created to want to constantly check in somewhere!  But, after a day or two of going internet-free, and after I’d used my normal computer time to clean out a desk that had become a neglected storage unit, I felt like I could push through this fast I was attempting. 
I got lots of stuff done.  The kids started to be creative instead of sedentary.  We scheduled play dates.  We ventured out into the real world.  As the week progressed, Ronan got to practice going out into our local community—a community I prefer to avoid, avoiding it because Ronan doesn’t always do well when we try to run errands.  Plus, people in the real world and I don’t usually have too much in common, which is the biggest reasons I gravitate toward being on the internet—so I can connect with other like-minded moms and dads.  But, out into town we went to see what the world had to offer. 

As each day went by, I had a better chance to make a new routine for myself and my family.  And why not?  The kids were happier and our house was cleaner.  We made time to have friends over for a long-overdue play date.  We enjoyed time spent together.  I found success in areas that I had made an effort to previously ignore.  I was happy, and we were creating better order in a short amount of time. 
With my new-found desire to try to find other activities to keep us busy, we ventured into town one more time.  After a trip to the library one afternoon, I had a handful of items I needed to get at the grocery store.  Ronan has been resisting going into any store causing quite a scene well before the entrance.  We’d oftentimes had to turn around and get back in the car with the promise to try again another day.  I wondered if Ronan could make it through one more thing that afternoon before we headed home.  I wouldn’t know unless he tried, so we pulled into a parking lot, piled out of the car and walked into the store.  Ronan made it through the thirty-minute shopping trip!  At Super Wal-Mart no less! 

Stepping back into the real world was turning out to be a breeze.  I had seriously curbed my computer time and even the desire to turn it on.  But then, I meet some people who forced me back on the web.  Three people I happened to run into while we were taking a break from my old habits.  Three people who I’d probably never strike up a conversation with or be vocal about before Ronan’s vaccine injury.  Three people who were looking to me for advice and asking for it before it got too late for their child.
Those people and I had nothing in common and then, with our chance encounter, everything in common.  Could I help them?  What should I tell them?  The panic in their requests and the instant anxiety that came over me while listening to their stories ended my internet fast.  They needed direction.  I could help.  And quickly.  I promised I would the minute I got back home.  But only after I tended to my kids and their needs. 

Look at Me

By Cathy Jameson

“Look at me!
Look at me!
Look at me NOW!
It is fun to have fun
But you have to know how.” –Cat in the Hat by Dr. Seuss

Ronan has loved his Dr. Seuss books for several years now.  He really enjoys ‘The Cat in the Hat’ and ‘Green Eggs and Ham’.  Flipping back and forth to his favorite pages, he hands us his books so we can read aloud to him.  Since he loves the books so much, I’ve memorized several of the pages.  To Ronan’s delight, I offer these silly sentences to him at random times of the day.  Ronan’s siblings do a really good job at keeping Ronan engaged too.  Big Sis adds silly sounds and acts out certain scenes.  Little Buddy offers goofy expressions at the really funny pages while pointing to the words he’s reading.  Ronan’s little sisters wait patiently to see the pictures while Ronan eagerly looks for his next favorite part of the story.

Ronan’s been thumbing through, scanning and reading books for several years now.  We have multiple copies and other Dr. Seuss media—board books, apps for the iPad, DVDs, flip books and have bookmarked favorite youtube videos.   I love that while I read aloud, Ronan is able to fill in many of the words.  It’s not verbal language yet, so he signs everything to me. 

I turn into a teacher again asking Ronan to fill in the words, “But our fish said, ___, ___!  Make that ___ ___ away.  Tell that ____ in the ___ you do NOT _____ to ____.  He should not be here.  He should not be about.  He should not be here when your ______ is out!” 
 



Happily, Ronan knows the words and quickly adds the signs.  I don’t have too much time to pause between pages, so I catch my breath and continue the delightful tongue twisters that bring Ronan and me closer. 

An Autism Mom Shows How Easy It Is to be a Congressional Armchair Advocate

By Cathy Jameson

We have questions.  Our Congressman should be able to us get answers.  In a perfect world, all of our question asking will have paid off and the truth revealed.  The truth, especially as how it relates to vaccines and autism, has been hard to get.  Many of us have gone round and round locally with our doctors, special education departments and state government agencies while working tirelessly to heal our children.  Yes, it’s been tiring; but, it’s time to think bigger.  It’s time to get the attention of our nation’s leaders—those people who have promised to work for us. 

With a few politicians at our disposal, especially those who attended the 2013 AutismOne Congressional Panel last weekend, keeping their attention is important now more than ever.  Before you shy away in a corner thinking you have no experience dabbling in politics, getting the attention of our government leaders isn’t as hard as it sounds.  It, just like so many things you’ve already done, is just a quick Google search away.  I’ll prove it. 

I am as shy as shy can be when it comes to meeting new people.  New people who run for office make me even more nervous.  Until last week.  After listening to Rep. Posey’s (R-FL) speech in Chicago, I ditched my nerves and got straight to work as soon as I was home.  Posey, who had given us in the audience a grand pep talk, also gave us three challenges--tasks I thought would be somewhat manageable even for how incredibly busy I am.

After unpacking my suitcase and catching up with my family, I began the search for my Congressman.  Some might think I should already know who this person is, but taking care of my vaccine-injured son has been a full-time endeavor.  Knowing who my representative is hasn’t been on my radar.  But, with the renewed energy AutismOne gave, and the fact that I had accepted Rep. Posey’s challenges, I jumped on the computer and began my search.

After Googling my guy, I located my Congressman’s local office and rearranged an afternoon of errands and appointments.  I made plans to drop in, introduce myself and to begin a relationship that for years before would make me shudder. 

My agenda was short:  meet the staffers (and the Congressman if he happened to be in this particular office), ask for their help and share my adventure in today’s post.  Most of these simple steps, dictated by Rep. Bill Posey during his motivating speech at AO, were quite easy. 

Cat Jameson, Rep. Bill Posey (R-FL), Thalia Seggelink, also known as Tex on TMR’s Thinking Out Loud show

Rep. Posey had asked all of us to do a few things after the conference.  

-First, find out who our own Representatives were. 

-Second, ask him/her to co-sponsor HR1757, The Vaccine Safety Study Act. 

-And third, come back to him in one year’s time having already started at least one case file or inquiry with our own Congressman. 

With All Due Respect, Mr. Congressman.

By Cathy Jameson

The 2013 AutismOne conference is now but a memory.  For those in attendance, it was no doubt a moving experience.  Several people have already blogged about what they saw, who they spoke to and how it relates to their child’s journey.  Being able to catch up on the AO comings and goings is much appreciated.  Since I remain in constant motion the minute I step foot in the hotel to the moment I get on a plane heading home, I tend to miss some of the lectures and events. 

Despite how my own schedule filled up while in Chicago, the event I made sure to attend—and what I think was the most important that occurred last weekend—was the Congressional panel.  I got to the room early to make sure I could get a seat in the audience.

Scheduled to sit on the panel were four U. S. Congressmen.  Rep. Dan Burton (R-IN), past Chairman of the Oversight Government Reform Committee, introduced hearings on Childhood Vaccines and Autism in 2000.  His efforts to get specific questions on vaccines answered date back to before 2000 after his grandson became ill from his childhood vaccines.  Rep. Dave Weldon (R-FL), now retired from politics, was also on the original committee with Rep. Burton. Rep. Bill Posey (R-FL) and Darrell Issa (R-CA),both  new to the autism scene, were part of the November 29, 2012 Autism Hearing. 

At that hearing, Rep. Issa promised that the committee will stay involved, and if there was further need, have more hearings about autism.  Also vocal about his commitment to help us was Rep. Posey.  Keeping true to his word, and along with Rep. Carolyn Maloney (D-NY), who was also present at the 2012 hearing, Rep. Posey has a bill before the House called H.R. 1757, The Vaccine Safety Study Act.  It is a monumental bill that asks the government finally to conduct an unbiased vaccinated vs. unvaccinated study, a request that has been ignored for far too long.  I was anxious to hear more.

Back Track

I hoped one of the Representatives on the panel would give us a follow up of the hearing.  To my knowledge, we haven’t heard much of anything from the committee.  I don’t believe I’ve seen any updates about the reports that Drs. Boyle and Guttmacher were asked to supply after being grilled throughout their testimonies.  Did they answer the questions they were asked about autism, vaccines and vaccine safety?  It was comical yet terribly absurd that during the hearing, both doctors hemmed and hawed about statistics and studies on autism and vaccines—information that many an autism parent can cite from memory! 

I Have Come To Realize

By Cathy Jameson

A few years ago, a friend tagged me in a note on Facebook called “I Have Come to Realize”.  Every sentence began “I have come to realize that...” and included about thirty random ideas.  My friend had filled in her realizations and asked that I copy/paste the note and offer my own.  It was a neat activity that had nothing to do with autism, so I quickly followed the directions.  Copying the outline, I filled in my answers and then shared the note with my friends. 

I’ve since deleted the note off of Facebook, but I saved the answers in my writing file.  I did this to capture my thoughts in that moment of time hoping to learn from them in the future.  I come across that file every now and then and always make time to reread it.  Some of the entries make me laugh while others give me an insight to the fears I had at the time.  Many of those revolved around Ronan.  Some of them are the same fears that I still have today. 

With those worries never too far from my thoughts, I experience mixed emotions when I open the file.  I feel trapped in that some things haven’t yet changed for the better.  I also feel a bit stronger knowing that I have at least admitted that I am afraid. 

From several years ago:

- I HAVE COME TO REALIZE that I have lost...a lot of time by researching instead of doing or just living.

- I HAVE COME TO REALIZE that when I get on Facebook...I escape to my past since I'm afraid of the future.

- I HAVE COME TO REALIZE that my friends...are more of a lifeline that I imagined.

- I HAVE COME TO REALIZE that this year...is one full of questioning but also of accepting.

- I HAVE COME TO REALIZE that I'm totally terrified...of many things now that I'm a Mom.

The realizations that I have now aren’t very different especially when I think about the ones specific to Ronan and his vaccine injury.  After reflecting on that list while preparing to go to the Autism One conference I decided to rewrite it.  Thinking about who I’d get to see, what I’d get to hear and why I feel like I have to be at  Autism One and away from my family for four days, I made new entries:

I have come to realize that what happened to my child broke me into a million pieces. 

I have come to realize that I am stronger because of what happened.

I have come to realize that it takes more than just keeping one foot in front of the other.

I have come to realize that bad days can be really, really bad and full of a pain that I never thought I’d ever experience. 

I have come to realize that as much as I despise those people who knew about the damaging effects of vaccine injury, I would never wish this journey on anyone, including on those who caused it.

I have come to realize that as a mother of a special needs child, my faith is challenged more than I ever expected.

I have come to realize that no matter what has (and could) happen to Ronan I will never waiver in my faith.

Chicago Bound For Autism One

Mark, Cat and Dan smile for a photo op.

(Note: we''ll be live blogging from Autism One on Friday and Saturday to bring the conference to our readers.)

By Cathy Jameson

I wait all year for this week to arrive.  This is the week I get to take a much-needed break and head to the Windy City.  Surrounding myself with friends who are like family, I get to see people I've known online for years.  I get to hang out with a group of believers who prove time and time again that nothing will stop them from helping their children.  Besides the Christmas holidays, going to the Autism One conference is my favorite week of the year.

This year, the conference sounds bigger than ever.  Congressional representatives will be in attendance.  Several authors of newly release books will be presenting and offering book signings.  Talks on biomedical, therapeutic, traditional and think-outside-of-the box approaches will be available.  Favorite old timers and some fresh, new faces in the field will share their knowledge and experience.  Many of us from the AofA team will also be at the conference.  We’d love to meet you and hear your story. 

The Autism One website lists the scheduled presentations and speakers.  This year’s schedule is

Cat and long-time AofA reader and supporter Lin Wessels meet for the first time. Wade Rankin proudly wears his Canary Party t-shirt in the background.

packed from Wednesday through Sunday and looks like it has something for everyone.  The keynote and Congressional panel will no doubt be a must-see for many conference goers.  Trying to find time to do everything and see everyone may be tricky, but as usual, special events will round out the conference.  These events help balance the intense learning and listening that goes on during the day.  It’s a great way to meet new friends while enjoying a fun night out.  

Hope remains the theme as we all create stronger unity within the community.  With only a few days left before the Autism One annual conference begins, I better start packing my bags.  AO, here I come!  Hope to see you there!

Cathy Jameson is a Contributing Editor for Age of Autism.
For more information and how to register, call 1.800.908.5803 or email info@autismone.org. 
 



 

 

Ten Little Fingers

By Cathy Jameson

While anticipating the birth of my first child, someone told me that new moms shouldn't worry while pregnant.  It isn’t healthy for the pregnancy or for the baby.  As long as the baby has ten little fingers and ten little toes, that's all a new Mom should worry about. 

…ten little fingers

ten little toes

a new one to love

with a small button nose

skin that’s soft, pink and new

love so strong

from me to you…

Ten little fingers, ten little toes.  It sounds so simple, so pure an so peaceful.  As a first-time mother, that’s all I thought to hope for. 

I don't think anyone can fully prepare themselves for where motherhood will take them.  Not until they are fully immersed in that role will they understand it or appreciate it.  My journey as a mother has morphed greatly and goes far beyond what my imagination could ever reveal.  From expecting them to being able to hold each my children in my arms after their births, I never knew how having children would change me.  All of my children, especially Ronan with all of his severe needs, helped me mature and evolve into the mom I am today.  Worries have come and gone, but the love I have for my children has only grown stronger.

The thoughts and hopes that I had as a new mother are quite different than the ones I cling to now.  They have nothing to do with having ten fingers and toes and certainly don’t compare to complicated issues that cross my mind now.  Before Ronan got sick, I had limited knowledge of chronic diseases and how childhood ailments can take a turn for the worse.  I never knew about life-altering reactions from medicine or the complexities of an autism diagnosis.  Now, though, when those subjects bombard my thoughts, I can’t help but be reminded of every concern I have for Ronan and for his future.  I question things that I may never find the answer to.  I wonder if Ronan will ever speak again.  I worry about his safety and his health.  I contemplate how I managed his needs.  I examine my strengths and weaknesses and how they will affect Ronan and his future.  I face my fears in my thoughts.  I pray for strength to handle it all.  I do as much as I can always hoping it’s enough. 

Autism - Picture This

By Cathy Jameson

I was listening to a radio news station a few weeks ago when a story about pedestrian safety was being discussed.  Citing an increase in outdoor activity, longer days and potential bicycle, pedestrian and traffic accidents, the Street Smart project kicked off in early April.  Images on the posters that would adorn bus stops, the sides of city busses and kiosks in the metro Washington, D.C. area is part of the in-your-face advertising.  Literally.


 

Traffic safety with a hint of reality.   It’s pretty clever.

What if we had our own autism-vaccine-injury smart campaign?  Not that we have to ask permission to post the thoughts, images and documented proof of what our severely affected children deal with.  But can the general public stomach the “smart” side of autism that the mainstream news doesn’t show?  Could they tolerate looking at the poop smears?   Would they be able to watch the seizures parents videotape to prove that their child seizes?  Can the unaffected handle what affected parents work through, manage and battle day in and day out? 

We‘re already outspoken.  We’ve revealed the truth forthrightly.  But our speaking truth to the public has not gotten us results we want.

Maybe ‘shock and awe’ would be more useful.   The Street Smart campaign has taken common sense, added a side of powerful imagery and voila!  Responsibility, accountability and compassion are evoked.  Human lives are at stake with autism also; arousing images can put a human face on autism, the difficult, too often hidden devastation that strikes our kids.

Are We Done Yet?

By Cathy Jameson

As we draw a close to another autism awareness month, I’ll admit I am not sad that this month is over.  Why?  While looking up the history of the autism awareness campaign and when it started, I discovered that the campaign began in the 1970s.  When I did my first search, I thought I had discovered a typo.  Surely they meant the 90s.  Nope.  Not a typo.  Someone was trying to get people to notice autism two decades earlier.

Lots of us are doing a lot more than notice autism now.  We’ve been sounding alarms about the autism rates and what the disorder has done to our children for what we feel is an eternity.  Obviously awareness hasn’t been enough.  Look at that old rate again.  The rate from 40 years ago.  When it was 1 in 25,000.  Look at all those zeros in that number! Twenty five THOUSAND.  That’s the population of a small town.  It was likely that one person out of an entire community was diagnosed with autism 40 years ago.   That’s not so today; we’re able to pick out a handful of affected kids on one play ground!  

Since the earlier campaigns, I think it’s safe to point out that having awareness didn’t slow, curb or end the autism epidemic.  Proof is in the new numbers.  The autism rates skyrocket as this month’s awareness campaign kicked off.  Just days before April began, the CDC revealed a new rate.  An even higher rate.  Another jaw-dropping-rate-but-let’s-do-nothing-about-it rate.  Granted, we’re being told a different formula and strategy were used to calculate this current number, but the number still screams, “THE AUTISM EPIDEMIC IS GROWING, AND IT’S GROWING AT AN ALARMING RATE.”  What response did we get in reply? 

Ho hum, it’s just autism.

This autism awareness month, which other groups chose to celebrate and embrace, saw an announcement that autism is affecting 1 in 50 school-age children.  1 out of 50.  1 out of 50 who struggle with speech, social skills or personal care.  1 out of 50 who are dependent on another human to be fed, clothed and bathed.  1 out of 50 who require intense intervention and therapy that insurance companies refuse to cover.  1 out of 50 who may never live on their own or feel independence as previous generations have.   I find nothing to celebrate, nor embrace in these numbers and what it means for so many children’s futures.

Autism and Vaccine Injury: It's a Mad Mad Mad Mad Lib World

This week Cathy Jameson shared her post as "Mamacita" from the Thinking Moms' Revolution.  It's a "Mad Libs" take on well visits.  Remember Mad Libs? The small flip over story books where one person asked another for a verb, noun, adjective - and inserted them into a story. The results were always funny, sometimes even naughty.  But never so ________ (adjective) as this post from Cathy.

Everywhere. Every state. Every race. Across many ethnicities, neighborhoods and communities. We Thinkers hear it: All. The. Time. It’s the same story. Different kid. Different doctor’s office. Same regressions and unexpected journey. Surely you, too, have heard it before. It goes something like this:

I took my brand new baby to the ___________ (adjective) pediatrician’s office for the second time. The first “well-baby” visit didn’t go very well at all. The __________ (adjective) nurse told me quite ___________ (adverb ending in -ly) that she wanted to stick __________ (#between 1-15) vaccines into my child. “_____(same #)! __________(exclamation)”, I balked. I looked around the exam room and wondered what my Thinking Moms friends would say about this ___________ (adjective) plan.

**Here’s where things can change for the better. What if more parents realized they had more of a say in their child’s health care? Back in the exam room: I looked around the exam room and wondered what my Thinking Mom friends would say about this ____________ (adjective) plan.

Read the full post at Thinking Moms' Revolution.

What Doesn’t Kill You

By Cathy Jameson

During the hype of the flu shot season, I went through our local pharmacy drive-thru to get a prescription filled.  Not being able to avert my eyes from the posters, signage or cheery Flu Shot ribbon hanging from the pharmacist’s name tag, the flu shot propaganda was everywhere. 

I rolled down my window and waited to be greeted.  Within a few seconds, the pharmacist said hello.  I said hello and handed a script to the pharmacist.  Flashing a cheesy smile, he asked me if I wanted to come into the store for a flu shot while I waited for the medicine to be ready.  Caught a little off guard, I looked at him and politely replied, “No, thanks.”  My daughter, who was able to hear the conversations, shot me an I-can’t-believe-he-asked-YOU-that-question look. 

“Oh, did you already get one?” the pharmacist pried. 

Here we go, I thought.

“Nope, we don’t do those.”  Since I felt like I had nothing to lose, I added matter-of-factly, “We don’t do those because my son was injured by his vaccines.”

With a deer-in-the-headlight look, his response to me was, “Injured?  Did the needle break off in his arm?” 

It returned a deer-in-the-headlights gaze back at him.

Seriously?

I was tempted to be very curt with this young man.  More than a handful of slick responses filled my head:  “Are you kidding me?  Break in his arm?  Have you no clue?  What’s wrong with you?  Do they not teach you anything in school anymore?”

But, I bit my tongue.  I shook off the frustration of running into another flu-shot fanatic dressed up as a lab-coat uniformed medical professional.  I continued, “Nooooo, the needle didn’t break off in his arm.  My son got his childhood vaccines and then became quite sick.  He was typical before them, and now he has autism.”

“Really?  Autism?” he inquired.

“Yes, autism.”  Without hesitating, I added, “Vaccine-induced autism.”

The Little Things

By Cathy Jameson

Gosh, that smile of yours. I miss it.  I miss that happy baby grin.  And those sparkling eyes.  And your husky voice and those perfectly round, oh-so-pinchable cheeks.  Where did they go?  You lit up every part of a room you walked into wherever you went.  I miss that.  I miss that about you and how full of life you were back then.  I miss all of it.

When you started to slip away, much of your typical development was replaced.  Silence fell over you.  Milestone achievements came to an end.  The further into the abyss you fell, milestones even seemed to reverse!  It didn’t make sense.  Since then, you’ve been met with every delay imaginable.  Playtime?  It’s a struggle.  Interactions?  They are fleeting.  Abilities?  Some are non-existent.  Conversations?  Those were stolen from you after your words disappeared.

What am I to do?  Accept what happened to you and move on?  That isn’t fair to you.  You’re a worthy of more than that.  Your life is more valuable than just being a statistic.  Every fight and every victory I obtain for you is done to bring you justice.  And peace.  How I’d love to feel at peace again.  Battles I wouldn’t wish on another human being are part of my mission--a mission to bring you healing.  

So much changed for you and within you.  What changed for me?  New words I never knew existed pepper my vocabulary.  People I never thought I’d ever encounter now sustain me.  That’s comforting.  Somewhat.  Even with the knowledge I have, and with the support that envelops me, I still feel like every day is a new day and that nothing is a certainty.  I’m in “go” mode at all times.  Most of the time is because of unsettled fear.  Fear that you could lose ground on any given day and fall further behind.  I lost you once, and I’ll be damned if I lose you again to more regressions.  So, I go forward.  I learn everything I can.  And I stand up and fight for you.  It’s what I do to keep us both feeling like we’re moving forward. 

Could I do more?  Absolutely.  Am I trying as hard as I can?  You bet I am.  Is it going to take a long time to do everything and then some for you?  Apparently.  We’re 8 long years into this, you and I.  Am I ready to stick it out?  Of course I will.  Your life, your purpose and your well being have become a priority that I will not ignore. 

Autism and April: Embrace This

By Cathy Jameson

Let me embrace thee, sour adversity, for wise men say it is the wisest course.
--Shakespeare

It’s that time of year.  We’ve flipped a calendar page to a new month:  the month of April.  The month when autism groups, who make money off of our kids’ diagnoses, go into full-fledge fundraising mode.  From walking around in circles promoting awareness to slapping a puzzle piece on every-day household products, this type of fundraising saddens me.  While our children’s needs are used for another’s gain, these money-making tactics suck the life out of me. 

April used to be my favorite month.  It ushers in springtime weather and the awakening of new life.  It also happens to be my birthday month.  Now, when I think about April and how blue it makes me feel, it’s the worst time of year.   Long before the month starts, I’m done with April and the autism ‘awareness’ and ‘celebration’ it brings. 

Not only has autism awareness been pushed so much that I’m blue in the face because of it, I recently saw a new campaigns are asking us to embrace it.  Embrace autism.  Really?  I’ll embrace a lot of things, but I will never embrace autism.  Before anyone jumps down my back saying I don’t love the person behind the autism label, rest assured I do love that person.  I love Ronan to the moon and back (well, farther than that really because many of you know I will do everything I can for him).  HE is who I love.  HE is my inspiration.  HE is the reason I work so hard.  But, to ask me to embrace WHAT grips him from the inside out, what limits his abilities and his potential, and what he struggles with almost every minute of every day?  Never. 

Happy Easter from Age of Autism

By Cathy Jameson

An Easter Blessing.

Forty days ago I gave up something in preparation for my Lenten journey.  Slipping up a couple of times, but before I could be totally sidetracked, I realized how quickly I could ignore this sacrifice.  Fortunately, with reflection and prayer, I was able to redirect my thoughts and stick to promises made.  Replaced with peace of mind, self-control and a chance to make amends, I continued through these last few weeks with discipline.  In doing so, I also reduced a bad habit that I had allowed myself to engage in. 

Today is an important day for me.  Not only is it Easter, one of the holiest days of my Church’s year, it’s also a milestone of making a commitment to better myself.  I got the chance to start something over, and to do it better this time around.  I pray that I continue to find strength to fulfill the promises I made a few weeks ago and that they have a positive effect on those closest to me. 

Easter.  A time of renewal.  A time for joy.  A season of new life.  A season for growth.  May today’s Easter blessings bring you new life also.  May it fill you with courage and perseverance needed for this journey.  May you too find strength to keep your promises alive.  And with every possibility for hope and healing, may we all find happiness wherever we turn. 

Cathy Jameson is a Contributing Editor for Age of Autism.

Canada’s Health World, The Good, The Bad, The Ugly

By David Burd

Neil Z. Miller’s 3/25/13  AofA Post relating his presentations on dangers of infant vaccines being rebuffed, hindered, or censored by Canadian officials prompt me to specifically convey the bizarre but true World of Flu in Canada compared to the U.S,, though I am confident that much pertains to most every vaccine.

My years of study of Canada versus the U.S. compares “apples to apples” as both health systems have the exact same boilerplate for weekly influenza (flu) reports.  In the U.S. it is the CDC “Fluview” - whereas in Canada their version is the PHAC (Public Health Agency of Canada) “Fluwatch.”  Any layperson or health professional can easily access the Weekly Reports by just googling those websites.

Back in June 2, 2010 AofA ran my Post citing the vast disparity of pediatric “flu-associated” deaths between Canada and the U.S.  I cited U.S. pediatric mortality rate was four times that of Canada, and I made the case terribly toxic drugs such as Ribavirin have been given for years in the U.S. hospitals whereas Canada’s protocols distinctly avoid this nucleoside analogue (basically the same as cancer chemotherapy) that immediately causes hemolytic anemia (quickly kills red blood cells).

At any rate - Neil Z. Miller is a hero and I’ve always wanted to communicate with him.  So in that spirit I hope he reads this Post, and I commend him for all he has done, and does.

First, The Good about Canada: The June 1, 2012 issue of Pediatrics (Epub was 5/14/2012) by five Canadian health professionals cites over six years ending 2009 but an average of 5% of Canadian Ontario babies (up to age 2) had parents that took them to get annual flu vaccinations.  The Province of Ontario includes Toronto and their capital Ottawa, and is 40% -of Canada’s population.  Thus, I contend Ontario is an accurate barometer of all of Canada.   The following is the Pediatrics Paper reference::

Pediatrics. 2012 Jun;129(6):e1421-30. doi: 10.1542/peds.2011-2441. Epub 2012 May 14.
Low rates of influenza immunization in young children under Ontario's universal influenza immunization program.

Winners! The Thinking Moms' Revolution Book.

Congrats to Kasey Dettinger and Jeff Belloni, you've each won a copy!

Thinking Moms’ Revolution - Autism Beyond the Spectrum: Inspiring True Stories from Parents Fighting to Rescue their Children

How do 23 moms and 1 dad give birth to the same baby?  Just ask the Thinking Moms!

The Thinking Moms’ Revolution is pleased to announce the arrival of their book Autism Beyond the Spectrum:  Inspiring True Stories from Parents Fighting to Rescue their Children. 

Autism Beyond the Spectrum is a compilation of over twenty stories of healing and hope collected by Helen Conroy and Lisa Joyce Goes.  Each chapter describes how parents are fighting to recover their children from autism and related disorders. Beginning with how they met and where they are today, the twenty-four Thinking Moms share why the support of close friends, who are also parenting kids with special needs, is so important. From their individual experiences to what they’ve learned during their journeys, read how TMR’s determination and friendships have become daily motivation for parents worldwide.

Pre-ordering of the book is still available on the Barnes and Noble, IndieBound, Amazon and The Book Depository websites.

Congratulations to the Thinking Moms.

Cathy Jameson The Autism Parents' Bucket List in MetroParent Magazine

Hearty congratulations to Contributing Editor Cathy Jameson whose AofA post called "The Autism Parents' Bucket List" was picked up by Michigan's MetroParent online site.  Earlier this month, Contributing Editor Julie Obradovic's post on grandparents was picked up by Grand magazine.  Thank you to our Contributing Editors for their continued excellent writing.

I don't live in southeast Michigan, but I stumbled across Metro Parent's Childhood Bucket List last month online. With a cheerful graphic and a happily-ever-after tone, it was one of those bright and sunshiny pieces that should leave readers in high spirits as they thought about their child experiencing the 101 exciting experiences and lessons on the list. But for me, the mother of a child with autism, it had the opposite effect.

At first it was fun to read the suggested must-do activities. But the more I read, the more I felt completely left out. Easily, I could see my four typical children enjoying many of the suggested outings, but trying to imagine Ronan doing them? Not a chance...    Please leave a comment at MetroParent.

The Thinking Moms' Revolution Book Is Here! Win a Copy.

Thinking Moms’ Revolution - Autism Beyond the Spectrum: Inspiring True Stories from Parents Fighting to Rescue their Children

How do 23 moms and 1 dad give birth to the same baby?  Just ask the Thinking Moms!

The Thinking Moms’ Revolution is pleased to announce the arrival of their book Autism Beyond the Spectrum:  Inspiring True Stories from Parents Fighting to Rescue their Children.  We have two copies of the book to give away.  Please leave a comment below to be entered to win. 

Autism Beyond the Spectrum is a compilation of over twenty stories of healing and hope collected by Helen Conroy and Lisa Joyce Goes.  Each chapter describes how parents are fighting to recover their children from autism and related disorders. Beginning with how they met and where they are today, the twenty-four Thinking Moms share why the support of close friends, who are also parenting kids with special needs, is so important. From their individual experiences to what they’ve learned during their journeys, read how TMR’s determination and friendships have become daily motivation for parents worldwide.

Pre-ordering of the book is still available on the Barnes and Noble, IndieBound, Amazon and The Book Depository websites.

Congratulations to the Thinking Moms, and good luck to our AofA readers who enter the contest!

Clue In

By Cathy Jameson

I went to the thrift store yesterday and found a “vintage” Clue game in good shape with all of its pieces.  While purchasing the game, I remembered this post I wrote a few years ago.  Here it is again with some revisions. – Cat

--

It was done by the health care provider in the exam room with the syringe. 

I used to play the game Clue when I was younger.  Strategy, friends and a few hours of board-game playtime filled many afternoons.  We were preteens-turned-detective using our imagination to guide us as we questioned, "Whodunit?"  Each time we played, someone always found the evidence.  Someone always pieced the mystery together.  Someone always won the game.  And someone always put away the game pieces storing the box until next time.

Piecing my son's health back together after his vaccine injury reminds me of the game Clue.  When looking at all of Ronan’s evidence -- his physical health and then deterioration, his mental abilities and then disabilities, his emotional growth and then delays -- I conclude that it was done by the health care provider in the exam room with the syringe. 

The Autism Parent's Bucket List

By Cathy Jameson

A few weeks ago Metro Parent magazine, a regional publication in Michigan posted a bucket list.  Included were 101 exciting activities to be experienced during childhood.  With a cheerful graphic and a happily ever after tone, it was one of those bright and sunshiny pieces that should leave a reader in high spirits.  Obviously geared toward typical children and their parents, I was left more dejected than filled with joy.  

At first it was fun to read the suggested must-do activities.  But the more I read, the more I felt completely left out.  Easily, I could see my four typical children enjoying many of the suggested outings, but trying to imagine Ronan doing them?  Not a chance.  It’s hard enough for him to do one normal every-day activity let alone attempt 101 reach-for-the-stars adventures.

Pushing the article out of my thoughts, I looked for something else to read.  While doing so, I reminded myself how much Ronan has had to overcome.  I am proud of how successful he is and the fact that it’s because of his sheer will that he makes much of the progress he makes.  It may take ten thousand times more effort than the average child for Ronan to go through the motions, but he proves over and over again that he is no quitter.

While thinking about how long it takes Ronan to inch along, I got caught up in my thoughts.  Instead of continuing to think about Ronan’s amazing personal feats, I unknowingly started to compare him to his peers.  Glancing back at the 101 bucket list ideas, bitterness fell over me.   Those incredibly fun things are just not going to happen for my child.  They won’t happen now or any time soon for that matter.

I couldn’t help but think of how completely unreachable some of the must-do activities were.  Not just for Ronan but so many children like him—their childhoods are so different than a typical child’s and their skills minimal or completely absent.  The longer I stared at each entry the clearer Ronan’s abilities paled in comparison to whom these activities were geared toward.  Also very apparent was the reminder that we’re years away from even considering introducing some of them.  Sure I’d like Ronan to soak up the night sky away from city lights (#3), but picturing him outside in the dark of night under the stars made me shudder.  He’s been under the stars alone before, but it was because of a horrible mistake I made when I accidently left a door unlocked.

Shaking that terrible memory away, I scanned further down the list.  Make—and lose—a friend (#76).  Friends.  Oh, to have friends like typical children do!  The friends Ronan has are ones we choose for him.  Not because we are overprotective or controlling, but because Ronan lacks social skills necessary to know how to make and keep friends.  The people Ronan is surrounded by are people we trust and people who appreciate him for the skills he does have.  They enjoy his company even though his attention span is fleeting, and they never judge when his interactions with them are sparse.

Slow Down

By  Cathy Jameson

I’ve had a really hectic week.  Make that a really hectic month! We had multiple appointments almost every day for four weeks straight.  We even had appointments to get to on some weekends.  I’m not trying to get any sympathy, just stating the facts.  Last month was BUSY with a capital B.  It was also difficult.  Lately, I’ve been a little bit overwhelmed with my family’s very full schedule.  I know something’s got to give, but trying to eliminate one appointment or therapy visit isn’t the answer.  That won’t work because whatever we miss will likely have to be rescheduled for another day on another busy week.  That isn’t a relief and just prolongs the busy and the difficult. 

I’ve finally committed to remembering to take care of me after putting myself and my needs on the back burner for too many years.  After neglecting some of my own health needs, I carved out time to finally catch up.  I now have weekly appointments to schedule, to remember and to get to.  Trying to squeeze everyone’s stuff on our calendar takes careful planning.  Inevitably, everything we need to get to doesn’t fit.  I don’t like to be the one who has to chose who’s getting shoved to the bottom of our list.  In the past it used to be my stuff that had to go.  I’d be okay with that now if I were spending time doing activities that didn’t matter—like trips to the salon, meeting up with friends at the coffee shop or doing some retail therapy.  But, my appointments have become just as important as everyone else’s. 

Our entire family is so busy right now that I have had to schedule when I can get to the grocery store.  That happens in the only 2-hour time block I have open on Mondays.  I know at some point I need to slow down and open some more time on our calendar, but “slow” is not an accurate word to use to describe my five on-the-go children.  To keep track of everything we’ve got to do, I carry our schedule with me electronically.  It’s the only way I can make sure I know which child should be by my side, to remember where we need to go and to also know when we have to be there.  Using my cell phone, I check the calendar on it several times a day.  I do this to make sure I haven’t forgotten anyone or anything.  If I’m not picking up or dropping off one child one day I’m picking up and dropping off two children to back-to-back appointments another day.  Sometimes the appointment locations are close to each other, but other days I’m driving across town through traffic hoping to arrive at the next destination on time.  We usually get where we need to as close to on-time as possible, but we have had some tight squeezes. 

The clinic or groups we see are very aware of our situation and of how many things I’m currently juggling.  Thankfully they don’t fuss when we walk in late.  It helps that we’ve had a chance to create good relationships with all of our providers and with people I am advocating with in our community.  They all understand the pressure of raising kids and give me a simple nod and smile letting me know they get it, and to relax, Mom, it’ll all work out.  I appreciate that because I’ve messed up their schedule by being really late other times or when I’ve shown up to an appointment on the wrong day altogether.  For the first time ever last month, I triple booked myself!  I was truly embarrassed and disappointed that I messed up.  I quickly apologized to the two providers I had to cancel with and headed to what I considered to be the most important of those three appointments:   the one where I was interviewed about autism, vaccine injury and Ronan’s journey.   

Setback Step-Up

By Cathy Jameson

Mid-week last week I got a phone call from the nurse at Ronan’s school.  It hadn’t been more than half an hour since I’d dropped Ronan off when I saw the school’s phone number flash across my caller ID.  The worst emotion comes over me when I see that phone number: heart-pounding, drop-dead dread.  

Of course, I shouldn’t think the worst.  It could be Ronan’s teacher calling to ask me to pick up snacks for Ronan while I’m out shopping.  Or it could be a reminder about an upcoming IEP meeting.  But, I always know when it’s the school nurse.  And, I can always tell when something awful just happened.

Barely audible, I answered, “H-e-l-l-o?” 

Please don’t be anything wrong.  Please don’t be anything bad.  Please not an accident.  Or a seizure.

“Hi, Cathy.  It’s the school nurse.”

I braced myself, my body shrinking as I unconsciously curled up waiting for her to continue. 

I pressed the phone as close to my ear as possible, “Yes?”

I already knew in my heart what happened, but I still prayed. Please, oh please, oh please!  Please don’t let it be serious.

“Ronan’s just had a seizure….”

In my mind, I’ve already put the car in drive, have raced to the school and am holding Ronan in my arms.

“Oh, no!” I exhaled.  As I release the air I’ve trapped inside, new emotions fill me—sadness, fear and worry. 

“I’ll be right there.”

As I drove toward the school, the nurse shared more.  She described the duration of the seizure, what Ronan did before, during and after, who was with him and how he’s responding now.  Thankfully, Ronan is okay, but I still need to see him.  To hug him.  To tell him that I love him.  And to say how sorry I am that he had another seizure.  I asked the nurse to tell Ronan that I was on my way and that I’d be taking him home for the rest of the day. 

The closer I got to Ronan’s school, the harder it was to keep from crying.  This wasn’t his first seizure or the first seizure at school.  I’ve gotten calls like this before and go through a mix of emotions.  Sometimes I manage to hold it together until hours later, and other times I silently cry while the nurse is still on the phone with me. 

As scared as I am when I get these calls, this one had me worried, but, I still didn’t cry right away.  I could have easily burst into tears the second the nurse told me what happened. Or while she described how this seizure seemed different than the last one Ronan had.  Or while I pictured Ronan’s teachers gathering around him to help him through it.  Or how I imaged how they stayed very close to him afterward.  Thinking about Ronan did after this seizure is what started the tears.

Ronan is usually either confused after a seizure or jumps right back into whatever he was doing prior to it.  This time, immediately afterward Ronan was able to sign that he wasn’t feeling good.  He signed his response which is something Ronan’s never done with me after a seizure.  When he was asked if he was okay, he was able to tell someone that no, he wasn’t.   So, when I imagined Ronan and his teachers who asked, “Ronan, are you okay?” and he signed, “No,” I was overcome.  Not only did he respond quickly, but when they asked him a few minutes later if he was okay he again signed, “No”.  He knew, and he was able to express himself clearly.  This was a first, and was also a breakthrough in his communication. 

As I approached the school grounds, through the tears I wondered why.  Why Ronan?  Why now?  Why, after these last few weeks?  He’s made some really neat progress, and he’s been happier.  He’s been willing and able to do more.  Why?  Why after frequent successful school reports and after advancements at therapy.  Why now?  And, why again? 

Tea for Two

By Cathy Jameson

One of my favorite t-shirt I had when I was younger was light pink with a Precious Moments character.  It had this saying on it: Tea for Two, Two for Tea.  One for you, One for Me.  I loved that shirt and wore it until it was too small for me.  I was reminded of it while waiting for an appointment to start one morning.   Ronan and his two little sisters were with me that day.  Since Izzy and Lil Sis are all too familiar with waiting rooms, which they frequent while Ronan goes from one specialist to the next, they knew it could be awhile before we were called back.  They found the waiting room toys quickly and began to play.  Ronan, who isn’t yet fully interested in toys or playing, used the dry erase board in another corner of the room.  I wrote some words Ronan knew and asked him to write some also.  After he’d signed the words I asked him to identify, Ronan finger spelled words that he wanted me to write.  Not too long into our activity we were interrupted by Izzy when she called to me, “Mom!  We’re ready (giggle giggle); you sit here (pointing to a spot on the rug).  We’re having a tea party!”  The girls had set up a cozy tea party right behind me and now expected my full participation.

Since Ronan’s attention span is still short I planted myself where Ronan could continue to write, where I could keep my eye on him and where I could have a “bite” of the tasty treats my little girls had set before me.  Well, before I had fully settled at this tiny feast on the rug, Ronan came over and sat in my lap.  He looked at the spread of plastic bowls, colorful plates and miniature food pieces and grabbed a plastic chicken leg.  I was curious to see what Ronan would do with it and was then shocked as he lifted the chicken leg to my mouth as if asking me to take a bite of it.  I said thanks and tried to grab it from his hand thinking he was giving it to me.  Ronan wouldn’t let go but instead put the chicken leg right at my lips.  He kept it there and waited.  I tried to say thank you and reach for it again, but Ronan wouldn’t let go of that chicken leg.  What was he doing?  Sitting there so close to me waiting very intently, it took me just another second before I realized ohmygoodness!  He wants me to “eat” it!  I pretended to take a bite while reaching for the chicken leg to put it back on a plate.  Nope, that wasn’t it.  Ronan left that chicken leg hovering in the air. 

My pretend eating was not enough.  Ronan kept the chicken leg poised at my mouth now moving it gently closer to me.  Ronan insisted I do more, but what?  Staring straight into my eyes, I looked right back at him.  Wishing that intense stare had directions with it, I thought, “Tell me, little boy.  Tell me what to do.  You know Mommy would do anything for you.”  I opened my mouth and pretended to take an even bigger bite, but still, Ronan’s reaction, or lack of one, told me there was something more he wanted me to do.  My mind was doing cartwheels at this pretend cooperative play and his focused interest.  Think!  What am I supposed to do?  Normally I’m the one waiting for Ronan to respond.  This time, I was being tasked with something that felt impossible. 

Not wanting to disappoint, or to ruin the wonderful pretend play Ronan was finally interested in, I leaned forward toward the chicken leg that Ronan was holding tightly to.  Still staring at me, his eyes pierced mine.  Oh!  “Yum,” I blurted out.  “Thanks, Ronan. YUM! YUM!!!”  Finally satisfied, Ronan took the plastic chicken leg away and put it back on the plate. 

Look It Up

By Cathy Jameson

Something’s been bothering me for a long time now.  It shouldn’t because many of us would be lost without it.  Parents get ripped a new one for using it.  But, lots of us, not just autism parents, continue to rely on it.  What is this thing I’m talking about? 

The Internet. 

Now, before some of you who lurk on this page have the chance to roll your eyes, please consider how much you yourself use the internet. 

Do you shop online? 

Do you download music for your iPod or add books to your Kindle? 

Do you order stamps, check on deliveries or schedule appointments on the Internet? 

Do you do your banking or pay your bills with secure web browsers? 

Do you communicate on message boards or Twitter? 

Are your circle of friends on Facebook, Google+ or Pinterest? 

How many of you keep up with your home team checking the latest stats on the team website?  Who’s made financial gains after buying stocks via an e-trading company?  What about your taxes?  Did you e-file last year or get a direct deposit of your return to your savings account?  Have you ever checked in for travel on an airline’s site?  Isn’t it amazing in that with just one click of the mouse a getaway trip is confirmed and a jet awaits you at the airport? 

The Internet is host to anything and really, just about everything.  Just about everything can now be blogged, posted, shared and pinned.  Both good news and bad news can be found while cruising the net—from joyous life moments like birth announcements, engagements and holiday adventures to creating memorial pages or charitable trusts for a lost family member.  I think it goes without saying, and that many will agree, that the Internet has a great many uses and makes life a lot easier, not just for a few, but for millions across the globe.  So, why is it okay for some people to use the Internet to research or promote their thoughts and agendas, but it’s perceived as practically sinful when others, like parents of vaccine-injured children, use it for the same purpose?

Websites provide answers.  They list information that would be incredibly difficult to find elsewhere.  From mindless entertainment to state-of-the-art advancements, websites reveal a multitude of facts, data, medical breakthroughs and more.   It truly is incredible.  Within nanoseconds what can be looked up on the internet has helped someone make a life-saving decision or given peace of mind.  Who doesn’t appreciate that kind of immediate information and gratification? 

I know that some people don’t appreciate what’s accessible on the web, especially when an autism parent finds it and begins to cite it.  Those answers, that research, these numbers, that cover up.  The information is there as plain as day, but we’re told how foolish we are for looking it.  It’s as if we’ve stumbled upon a national secret.   Heaven forbid parents take that information and think it beneficial in their search for help!  And, they better not share that information with anyone, especially with that doctor who won’t admit he’s got less knowledge than that answer-wielding parent!

Let Him Eat Cake

By  Cathy Jameson

Last week I was doing some writing in my office when I heard a strange noise coming from the kitchen.   I asked one of Ronan’s siblings to check out the noise hoping I could finish what I was doing.  My oldest belted out, “M-o-o-o-o-mmmmmm.  Ronan’s got his cupcakes from the freezer. You might want to come and help.”  I darted around the corner and was greeted with Ronan’s beautiful smile as he enthusiastically signed “Help me”.

Just a few mornings prior when I woke Ronan up for the day, I signed his breakfast menu to him.  Since it was a Sunday morning we were having a larger-than-normal breakfast.  I signed, “Ronan, I made you waffles, eggs, bacon and milk and juice.”  He looked at me as I was changing him and signed back, “Cake.” 

“Cake?!  Ronan!  I didn’t say cake.  Wait, do you want cake for breakfast?”  He flashed a smile and signed cake again. 

“Cake. For breakfast?” I asked. 

“Yes. Yes. Yes.” Ronan signed.  This time his whole face was smiling. 

“You got it, Buddy.  Cake for breakfast it is!” 

When we got to the breakfast table Ronan didn’t want to sit down. He walked into the kitchen with me and saw where I keep a few gluten-free muffins (which we have a habit of calling cupcakes) ready for special occasions on the top shelf.  Ronan watched me open the box and kept his eye on the toaster oven as it heated his tasty treat.  Not interested yet in the meal I had prepared, Ronan lingered in the kitchen.  I showed him the package and pointed to the words on the box.  Since it was going to be a few minutes more before he could eat his cupcake, I took out a pen and a notebook from the junk drawer and wrote some words down:  cake, cook, oven.  I asked Ronan to point to the words as I said them aloud.  He easily could identify them and pointed to cake several times after.  When the toaster oven was done warming up his special treat, he sat down at the table, gobbled up the cupcake and then ate the rest of his breakfast.