Cathy Jameson Feed

A Father’s Quest - Gardasil Vaccine

GardasilBy Cathy Jameson

About a year ago, I chimed in on an online conversation.  A man, who I assumed had a daughter because of the type of questions he was asking, was curious about vaccines.  He was specifically curious about the HPV vaccine.  He was especially curious if there were any risk factors associated with it.

Like all vaccines on the CDC’s schedule, the HPV vaccine does come with risks.  Despite referencing that fact right from the CDC’s website, I, as well as a few other parents, were unable to fully convince this fellow that the HPV vaccine wasn’t all that great.  Of course, it’s not our job to convince anyone to do anything, especially when it comes to making personal health care choices, but since this fellow was asking for further information, several of us took the opportunity to tell him what we knew. 

Statistics from current data with references—many from mainstream sources – was shared.  From the tone of the dialogue, it seemed like that information was appreciated.  As far as online vaccine conversations go, I thought it was a great conversation.  

He asked more questions.  We supplied more answers.  For awhile there, it felt like this guy was hanging onto our every word.  He did that until some of us started to add personal information. 

In the past, personal experience is inevitably woven into these sorts of conversations, and why wouldn’t it?  Vaccine statistics are based on vaccines administered to everyday folk and their kids, but when some parents start sharing their firsthand observations about vaccines, including how our own typically healthy children ended up with documented medical issues post-vaccination, some people stop listening.  The beginning of the conversation may have gotten off to a good start, but could tell it was starting to change.  This guy had just about had his fill of our input. 

I couldn’t blame him. 

I know how far-fetched some of our stories sound – healthy child turns chronically sickly, or begins to lose skills, or goes from typically developing to having autism-like symptoms with the only change in routine being a “routine” round of vaccines.  Believe me, I was an unbeliever when I heard those kinds of stories, too!  The more hard-to-believe personal stories and reasons that were offered as to why parents like us were now vaccine hesitant, the less he listened.  I wasn’t surprised that this guy, like other parents who are desperate for more information, began to turn us off soon after. 

He, like lots of other people who begin to question vaccines, wanted only the “good” statistics.  He wanted to get his hands on only unbiased scientific-based articles that focused on just the benefits and not on negatives that sadly do exist.  I wanted to tell him, Good luck with finding all of that, buddy! but took a step back from the conversation for a few minutes instead. 

Continue reading "A Father’s Quest - Gardasil Vaccine" »


Where’s the Outrage? Vaccines and Aborted Fetal Tissue.

Where pinkBy Cathy Jameson

I’m sure many of our readers are aware of the vaccine ingredient I’ll mention in today’s post.  Others have already written about the topic and covered the facts well.  Living Whole and Children of God for Life, for example,  have bravely spoken up about the use of aborted fetal cell lines in vaccine production.  I applaud them.  I wish I could applaud more pro-life groups, but I hardly see them speak up about the topic.

I say that I’m a hardcore Catholic.  But even I’ve yet to take on this subject.  If I were serious about it, I’d have contacted the leaders in my Church about it.  Some leaders have spoken, but their very broad statement seems more of a CYA than anything (and I’m not referring to Catholic Youth Association if you get my drift). 

For whatever reason, “the greater good” that vaccines supposedly benefit seems to trump the act of abortion and the use of this ingredient is justified.  It shouldn’t be.  But it is.  I think that needs to change.  So here goes…

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I shared this link of vaccine ingredients in a post a few weeks ago.  I’m sharing the link again in today’s post.  I’d like to do that because some of the ingredients that are listed have been on my mind for a few days now.  They’ve actually been on my mind for years, but I haven’t written specifically about them yet.

Someone highlighted the use of aborted fetal tissue use in a screenshot.

that I saw shared on FaceBook not too long ago:

CJ outrage 3

Sitting here reading those highlighted words makes my stomach turn.  

Continue reading "Where’s the Outrage? Vaccines and Aborted Fetal Tissue." »


A Family Member Responds to VaXxed

Sister memeNote: You know Cathy Jameson for her weekly posts: sometimes amusing, often heart stopping, always required Sunday reading.  Her sister Bridget went out of her way to see VaXxed The Movie and wrote about the experience. Family members can be our source of the greatest support or the biggest disappointment.   You can read the full post and much more from Cathy at her blog. And since Cathy often ends her Sunday posts with a song, check out my choice at the end of this post. Feel free to dance. It's Friday, after all!  Kim

A Family Member Speaks Up about VaxXed

Painfully aware of what's happened to Ronan, extended family members know that vaccines have done more harm than good.  Not every family member is in agreement - and have made that quite clear to us, but a few have quietly supported us through every hurdle, seizure and setback Ronan has experienced.  I don't know if I'll ever be able to fully express how much our their support means to me.  
When I found out that some of our extended family were going to be attending a Vaxxed: From Cover-Up to Catastrophe screening in their area, I cried.  Then I made sure to thank them.  By attending the screening, they jumped out of their comfort zone and bravely spoke up with us.  

After seeing Vaxxed, my sister, who has been one of Ronan's biggest and most vocal cheerleaders over the years, felt called to share her thoughts about the film.  I know that she may get flack for sharing what she did on her FB wall, but she shares as an eye witness to what happened to Ronan.  I can think of no one better to offer such important information than someone who has seen firsthand the negative consequences of vaccines.  

After I read through her post, I asked my sister if I could share it here.  She said yes, and I'm so glad. 

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Regrettably Yours

Regret
By  Cathy Jameson

For some children, like my son, autism isn’t just a different way of thinking; it’s medical.  From GI problems to severe expressive language delays to seizures, the spectrum of issues Ronan has are complex.  Many of those issues have contributed to a bad day.  The tears that roll down my cheeks on those days sting.

Learning how to handle all of what encompasses Ronan’s diagnosis hasn’t been easy.  The bad days can be really bad – those pop up when we have to resort to using emergency meds to stop seizures, or when we have to call 911 after Ronan’s wandered, or when I’ve become the punching bag after Ronan has tried to but is unable to communicate his needs. 

Due to Ronan’s behavior, and sometimes his seizures, days can go from bad to worse and quickly.  When that happens, we cancel things – things like Ronan’s therapy, a planned outing, and attending the siblings’ sports events. 

Dear Therapist, We’ll have to try, try again tomorrow…today is just not going to work out.

Hey Friends, we regret to inform you that we won’t be able to join you…hopefully next time.

Dear Coach, I hate that I can’t be there to watch the game. Please keep an eye on my kiddo for me.  Ronan and I are home today…cheering from a distance.

When all is clear and Ronan is back to his usual self, we tip toe back into our schedule and into the world around us.  Those are the good days. 

Ronan’s good days are really, really good – when he says a word, when he doesn’t need prompting to complete a simple task, when he willingly interacts instead of pushes us away.  We celebrate those and pray for more of them.  Lately, we’ve had a few tough days in a row.  When those days start to stack up, I find myself feeling sad and a tad regretful about how things have panned out.   

It’s not the first time I’ve found myself feeling regretful. 

As a new parent, I regretted not knowing as much as I do now.  When I knew in my heart that something was wrong with my child, I regretted waiting to act on my suspicions.  When I suspected that my son was showing signs of developmental delays, I regretted not listening to my mother’s instinct.  When I was getting nowhere making sense of the types of delays that Ronan was exhibiting, I regretted not asking for help sooner.  After finally asking for help and having my concerns completely dismissed, I regretted not switching doctors.  After doing some more reading and searching for answers, I regretted that I let the titles of the people I was talking to intimidate me.  None of that regret helped me in the moment.  None of it diminished any of the worry that I was also feeling. 

Oddly enough, regret fueled my next move. 

Fearing that what I suspected would lead us down the road to an autism diagnosis, I knew that it was time for me to start asking different people, people who would listen, for help.  Help came, but only after some of the professionals close to Ronan skirted the issue – Mom, don’t worry.  It can’t be autism because Ronan is able to point to things! 

He can make eye contact! 

He can still communicate!

And good news, he doesn’t line things up! 

I appreciated the positive outlook, but I couldn’t shake the nagging feeling that something was terribly wrong. 

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VaXed: From Cover-Up to Catastrophe Playing in DC

VaXxed 2
Cathy took a slightly different course this morning.

By Cathy Jameson

VAXXED: FROM COVER-UP TO CATASTROPHE

The Film They Don't Want You To See

** Now showing in Washington, D.C. **

Having opened over the weekend in our nation’s capital, the film, Vaxxed: From Cover-Up to Catastrophe,  will be shown in the District through Thursday, May 26th

Vaxxed is an investigation into how the CDC (Centers for Disease Control and Prevention), the government agency charged with protecting the health of American citizens, concealed and destroyed data in their 2004 study that showed a link between the MMR vaccine and autism.  This alarming deception has contributed to the skyrocketing increase of autism, potentially the most catastrophic epidemic of our lifetime.

Vaxxed is A Del Bigtree Production of an Autism Media Channel Film and is being distributed by Cinema Libre Studio

Invite your doctor, clergy and Representatives to join you for the Q&As with the filmmakers!  Dr. Andrew Wakefield, Polly Tommey and Del Bigtree, are scheduled to speak on Tuesday, May 24th, and Wednesday, May 25th, following the 5:45 pm and 7:45 pm shows. 

Showing at the Angelika Pop-Up at Union Market, located at 550 Penn Street NE, Washington, DC, 20002, click here to purchase VaXxed tickets

For more information and to read the latest news about Vaxxed: From Cover-Up to Catastrophe, check out the Vaxxed website,  and follow them on Twitter.   


Right to Know

Right To NoBy Cathy Jameson

The chance to educate parents in Oklahoma of the risks associated with products advertised for children known to have side effects was recently squashed.  As a former consumer of these products, learning about the decision to withhold information was disturbing.  It reminded me of a time when I traded my ignorance for blind trust. 

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When I’m shopping and see something that I want for my children, I take a few things into consideration before putting the item in my cart.  I ask myself if it is child-friendly and something my kids will like to use or play with.  After determining if it is, and that I can afford to make the purchase, I look over the product and review its quality.  Is it well made?  Does it meet safety standards?  Does the company who manufactures it have a good reputation?  If I discover that a flaw in the product after purchasing it, will I be able to return or replace it?  Simple questions, as a consumer they are valid and serve a purpose. 

Now, if I’m at the grocery store shopping for my children, I ask myself different questions when I see something that I want to buy them.  As I scan the ingredient list, I ask myself, does the product have nutritional value?  Is the particular food healthy – not by industry standards, but my family’s standards?  With the information right there on the box, I can easily choose to put the item in my cart or not. 

My kids don’t love how much I scrutinize products that come into our home, but since I’m responsible for their health, safety and well-being, when it comes to food, technology and health care products, I like to get as much information as I can about the things I’m choosing for them.  Most of the items I purchase list exactly what I wish to know and what I need to know. 

The right to know what’s in a product is a basic yet necessary concept all consumers should be entitled to.  It should extend to all products marketed and sold to parents, but I find that it does not always happen in the medical world. 

Instead of gaining access to information, parents and their rights quickly get brushed aside.    

The Right to Know

When a child undergoes a medical procedure, which include vaccinations, consent is given by the parent or guardian.  Consent is the green light to make things happen.  For some, giving a vaccination is a no brainer and consent is given quickly.  Those parents want their child to be vaccinated and don’t need any extra time, education, counseling, or documentation to help them with that decision.  Not all parents are quick to decide though. 

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He Calls Me Mom

Calls me momBy Cathy Jameson

Ronan has regressive non-verbal autism.  Losing his speech years ago, I never knew how unbearable the silence that followed would be.  When Ronan needs me, he’s able to show me in a variety of ways that he needs help.  Sometimes he comes to me and reaches for my hand.  Other times he signs “mom” with his pointer finger pointing at his chin.  Rarely has he done it, but he has called out to me using his voice to get my attention. 

Eye contact accompanies most of Ronan’s requests.  Piercing me with his dark brown eyes, I wait for Ronan to tell me what he needs. 

Hey, buddy.  What do you need? 

Ronan may or may not sign his next request.

He may or may not gesture what he wants.

He may or may not take me physically to where he needs my assistance (like to the kitchen cabinet for a snack, to the refrigerator to get a drink, to the living room to plug in the Wii, or to the den to watch a movie).

Since Ronan cannot tell me verbally what he needs, what follows is sometimes a game of charades.  

Do you need help?

A snack?

A drink?

A game?

A movie?

When Ronan can’t communicate what he needs, which is quite often, we’re both left frustrated.  Since Ronan can make some vocalizations, I’m encouraging Ronan to make them after he’s gotten my attention. 

Em. 

Ba. 

Da. 

Um. 

The sounds don’t make sense yet, but since vocalizations can turn into verbalizations, I celebrate every sound that Ronan can make.  Others celebrate with us, too.  Over the years, I’ve shared a few of those happy moments with family and friends. 

I don’t recall why the day was so bad, but look how things turned around when I heard Ronan call for me in January 2011:

The day drastically improved. Cathy Jameson will now be known as "Ah-mum-mum" Thankyouverymuch to Ronan for calling me that to get my attention.

I was over the moon excited that Ronan called for me by name in September of 2011:

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The Autism Beatitudes

BeatitudesBy Cathy Jameson

In trying to hold tightly to my usual hopefully-ever-after spirit, this post was created with the warrior parent and their beautiful child in mind.  These parents and their children have shaped many of us into the people we are today.  May they continue to inspire us to do more, to do better, and to always believe.

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What happened to my son didn’t have to happen.  But, it did.  And here I am ten years later still hoping he makes leaps and bounds progress but am settling for baby steps and try, try again moments.  While I myself try, try again to come to grips with reality, I make a point to pray, pray, pray.  As a life-long Catholic, some may think that praying should be easy for me.  But sometimes, it isn’t. 

For years, I’ve had a hard time saying the Beatitudes.  Read during the Easter season, which runs smack dab in the middle of autism “awareness” month (and continues through to Pentecost on May 15th), the Beatitudes can be found in the Gospels.  Eight of them, Jesus spoke of them as blessings, specifically eternal blessings.  That should bring me some sort of peace, or at least begin to humble me, but as I begin to say and pray them, my heart hardens.  Instead of concentrating on the contemplative prayer, my mind wanders.  I think about Ronan’s struggles.  I remember the physical pain that he’s in.  I recall his many hardships.  I recall my own, too.  When I try to refocus, my thoughts are invaded with sadness, worry, and frustration.  

Prayer should lift me up, not bring me down.  But bring me down is exactly what the Beatitudes did the last time I read them.  

CJ beatirudes
                                                         Drawn by Ronan’s little sister, Izzy.

The Beatitudes aren’t the best prayer for me to say, to reflect on, or to go to for comfort.  I’m not going to stop praying altogether, but I think that I’ll forgo reading them for now.  

Continue reading "The Autism Beatitudes" »


Cat Jameson Guest Blogs on Holistically Whole

RJ 4 24
Photo credit: Fiona Jameson


NOTE:  Thank you to Joanna for allowing us to excerpt Cathy Jameson’s guest blog.  Featured on Holistically Whole, a website that covers topics such as autism, nutrition, and healthy living, you’ll recognize much of what Cathy shares in the story.  Even though many of our readers already know it well, we thought we that we, too, would share the story one more time.

One More Time:  The Story That Needs to Be Told

When I prepared to write this guest blog, similar emotions came over me that I had described in a piece I’d written a few years ago:

I remember how overwhelming it was to be that mom. The mom who didn’t know. Who was afraid. The mom who had questions but hadn’t a clue where to look for answers. I also remembered something else: the emotions that come with the eventual discovery of Ronan’s vaccine injury. Sadness. Worry. Fear. Anger. Betrayal. Those emotions subsided but can surface on the bad days. They creep in during bad weeks, too. Those emotions came back last week and were strongest when I tried to tell Ronan’s story again.” – from Combatting Autism, 22 September 2013.

Ronan’s story.  I know it well. It isn’t always easy to tell it, but it’s time to tell it again…

Ronan was born right before Christmas in 2002. Welcomed by Fiona, an excited big sister, he had great APGAR scores at birth (8 and 9).  A cheerful baby, Ronan met his milestones and was interactive with family.  When our friends came to visit, he lit up the room when they greeted him. Everyone noted how happy Ronan was.  They also noticed how his chocolate brown eyes were full of life. I loved that just his presence alone made other people happy.

With two children under the age of two at home, I knew that I wouldn’t be returning to work anytime soon.  I’d left the teaching field right before my oldest was born.  I was happy with that decision and looked forward to play dates, visits to the neighborhood park, and making memories with my family.

We have plenty of memories, but some of them are not what you’d consider normal.

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To read the rest of One More Time, please follow the link to Holistically Whole.


Best of: Baby of Mine

Naked babyBy Cathy Jameson - August 2015

I got to hold a newborn.  I held him again a few weeks later.  It was an exquisite feeling to hold this child. 

The new life.

His perfect little body.

That newborn baby smell.

The endless opportunities he will have.

I’d attended his baby shower several months earlier.  I bought his mom, a young twentysomething, more than I should have but that’s because I was thrilled to support her.  With autoimmune disease in her family history, as well as having had to care for a family member with autism, she was rightfully nervous.  I felt it necessary to offer as much support as I could as she prepared to bring a child into the world. 

Her own history, plus knowing our family well and the medical path that I had chosen for my older children, prompted her to ask questions and to search for answers.  Long before she found herself preparing for her son’s birth, in a quest for knowledge, she’d decided what she would do when it was time to raise a family.  Not only did she decide what she would do, recalling my experience with my children, she also decided what not to do.  Instead of following recommended schedules and standard American practices, she would be as healthy, organic, and natural as she could.  She would be as free from everything “standard” as she could be, which also meant no vaccines. 

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Cat’s 2016 Autism Awareness Month Playlist

Fun-music-theme-vector-material-20504
By Cathy Jameson

It’s back. The month I used to love but now do my best to tolerate.

Before April gets a chance to begin, and before I start to feel like I’m drowning in blue splattered this and blue soaked that, I thought I’d give you a sneak peek of a playlist that I’ll surely have on repeat. From April 1st through to midnight on April 30th, and through some of the madness that comes during what used to be my favorite month, I have a plan. 

Earbuds in.

Music turned up to a nice respectable level.

Madness turned off.

As I offered last year,  here is an updated playlist for your listening pleasure. Feel free to add your theme song or a get-me-through-all-the-bluewashing song in the comment section below.

xo, Cat

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Maximillian and Medina – Stavos Mammonian

https://soundcloud.com/stavos-mammonian/maximillian-medina

I picked some great songs for this year’s playlist. Some are a bit heavy, but before we get to those, let’s get up and dance.

This one, produced by a friend of mine, puts a pep in my step every.single.time that I play it. On days that I find myself dragging my feet or on days when nothing seems to be going my way, I make a point of listening to it.

When you find yourself starting to feel down in the dumps, go ahead and play it, too. I bet it’ll get that toe of yours tapping. Sometimes a two – three minute dance break will do the trick to keep you going, so don’t be afraid to get up and dance if the spirit moves you. .

Try Everything – Shakira

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6 More Ways to Help During Autism ACTION Month

Sesame street 6By Cathy Jameson

I appreciate it when people recognize how much work it takes for me to care for son.  Ronan is 13 years old and has non-verbal regressive autism.  He needs 24/7 care.  From diapering to redirecting to reducing behaviors to managing his medical issues, including seizures, it’s more than a full-time job for me.  Some friends see that but they don’t always know how to pitch in.  That’s okay.  Some days it’s daunting even for me to think about everything that needs to be done let alone plan and implement and hope that everything goes smoothly!  There’s more than enough to do to keep Ronan happy, healthy, and safe though, so when someone expresses that they want to help my family, I humbly and gladly take it.   

When I’m asked, “Cathy, what can I do to help your family?” I share a few ideas from this list.  Posted two years ago, there are tons of ideas to choose:  30 Days of Autism Action Ideas  Even though there are plenty of ideas on that list, I thought I’d expand on a few of them this year:

1 – I think that many parents appreciate being able to take a break every now and then, but parents of a child with autism may not be able to.  If their child wanders or elopes, that parent cannot take their eyes off their child.  If their child is non-verbal or non-communicative, the parent may not want to leave their child in the care of someone else, especially if it’s a new person.  If a parent is able to take a break, it may be because the person they’ve entrusted their child to is a reliable family, friend, or a hired caregiver.  If you’d like to offer to be that family’s reliable help, learn what needs to be done and offer to be that person.  Even if it’s coming over a few minutes at a time, learn the routine.  Learn the stims.  Learn the triggers.  Learn the signs if the child uses sign language or become familiar with the communication device if they use that.  Learn how to help, and do just that.  If it’s too much to handle, because some of the care the child requires just might be, don’t give up on helping.  Find another way to be there for the family. 

2 – I have very kind-hearted friends who tell me after they’ve made a donation to an autism organization and that they’ve donated it in Ronan’s name.  Donations are great!  But some organizations don’t give back to individuals in need.  Learning that the money won’t go back into the community or to a family affected by autism can be disappointing.  So, before you give away your hard-earned money, ask the family where they think a donation will be best served and consider following the family’s request.

Continue reading "6 More Ways to Help During Autism ACTION Month" »


My Life for His

Mother's loveBy Cathy Jameson

As I put the car in park, I placed the handicap placard on my rearview mirror. I glanced behind me. My younger children were happily munching on snacks oblivious to the mental gymnastics I was doing as I thought about how to get us from point A to point B. I need to give them directions, so I asked them to take a break and listen.

“Guys, after we get out, we’re going to walk together. I’m not sure how the event is set up, so be ready to listen to directions and follow them, okay? It’ll take a few minutes for me to get Ronan ready, so finish your snacks and then let’s get ready to go.”

Nodding that they’d heard me, I turned my attention to Ronan. Opening his car door, I said, “Hey, buddy. I’m going to get your adaptive stroller from the back.” We haven’t needed to use it for quite some time, but with the long walk and the long wait I was anticipating, I let Ronan know that he’d be using it.

The kids gathered around while I buckled Ronan in his stroller. Ronan’s younger brother said, “Mom, when people look at Ronan, what do you think they think?”

We hadn’t drawn any unwanted attention (yet), but several other people were very close by, which is probably why Willem asked me that question. Some people were heading to their cars to leave while others were getting themselves organized to walk over to the sports’ field like we were. Not wanting to make any sort of eye contact with anyone, I had kept my head low and concentrated on making sure that Ronan was comfortable. I looked at my son and swept my gaze across the busy parking lot. Instead of taking a minute to answer him, I asked, “Well, before I answer that, what do you think that other people think when they see Ronan?”

Quickly responding, Willem said, “He’s in the stroller because his legs aren’t working or because something is wrong with him…or, or it’s because he has special needs. I know that without Ronan, I wouldn’t know what special needs meant, but because of Ronan, I know that it can mean someone has disabilities.”

“That’s a great answer!”

I continued, “If I didn’t know Ronan and I saw him for the first time in the stroller, I’d think that maybe he’s got problems with his legs. I don’t know if I’d think he had other problems unless I got to know him better. Ronan looks like a regular kid most of the time. It isn’t until someone tries to talk to him do they realize how delayed he is. That’s what I’d think.”

Ronan’s younger sister, Izzy joined the conversation, “I think they might think that Ronan should be able to walk and talk and play with other kids, but the more they look at him they see that Ronan can’t do that stuff. I think those people might think he needs extra help. But some people don’t come over to help. They just stare.”

We were just about to take the long walk over to the sports’ field when I asked Izzy, “Is it okay for people to stare?”

“No!” Ronan’s little sister emphatically answered.

I asked, “But what if it’s okay to stare?”

Continue reading "My Life for His" »


Finding Hope in My Health Class

CDC 2016 scheduleBy Fiona Jameson

When the second semester of my freshman year started, I felt somewhat prepared for the Health class I was about to begin, but I was concerned about topics what might be discussed. What if a chapter in our textbook included vaccines like my middle school textbook did? What if I had to defend my view of vaccines? What if I defend my views and others opposed it? I’m sure I could have a decent conversation about vaccines because of my family’s experience, but I know I’d feel a little uneasy talking about them because I don’t know my classmates very well yet.

I got my Health textbook before classes began. I went ahead and looked at the index to see if vaccines were mentioned in any of the chapters. They were. A vaccine schedule and a few sections that had quotes from the CDC were in the book too. After I saw that, I looked for the copyright date. I wanted to see when the book was published. It was published in 2001. That’s the year that I was born. The vaccine schedule back then was not as full as it is today. Today’s vaccine schedule is definitely fuller and has more vaccines than ever before.

Some of the vaccine information in my textbook is outdated, but what the CDC was saying in that book is the same thing that they say today – that vaccines are safe and basically wonderful. I hear that all the time, but I know that it is not true for everyone. It was not true for my brother. My brother, Ronan, was affected by vaccines but not in a good way. He lost some skills and abilities after he was vaccinated. He was doing okay before them, but now, he’s non-verbal and has autism.

When the topic of vaccines comes up later this semester, as nervous as I may get, I feel that I must speak up and say something about them. I’ll share my brother’s story. I’ll tell my classmates that I don’t want them to have the wrong information about vaccines. I will tell them even though the textbook only has good things about vaccines, they need to read more about them including vaccine have side effects. But I won’t have to worry about discussing that yet because we are talking about nutrition and food-related illnesses in class now.

We’ve discussed bulimia, anorexia nervosa, diabetes, cardiovascular disease and high blood pressure. None of us in the class have problems with those diseases, but we all agreed that knowing about those diseases was good. The more we know, the more we can know how to avoid them. We also all agreed that we should make better food and nutrition choices too because it’s good for our health.

Since nutrition is an important topic, we were assigned to do a project on it. I worked with another student and presented information about the six classes of nutrients, how water is beneficial for health, and how a healthy diet can help change society for the better. We offered suggestions about making healthy snacks at the end of the presentation. Everyone liked what we shared, especially because we brought yummy treats to sample. We did that to show examples of what vitamins and minerals were found in foods that a lot of us already eat.

Continue reading "Finding Hope in My Health Class" »


Things Will Only Get Better. But When?

Sister and brotherBy Cathy Jameson

I heard one of my favorite songs when I was grocery shopping on Thursday morning. Its lyrics ran through my head later that evening…

My youngest called out for me after she’d gotten herself in bed on Thursday night, “Mommy, aren’t you going to come tuck us in?”

Hesitating, I replied, “I’m sorry, honey. I can’t right now,”

“Why?” she asked.

“Ronan’s had some seizures. I can’t leave him yet,” I answered.

“Oh.”

I could tell that she was crushed. For a little kid, going to bed without a hug and a kiss can be devastating. I promised my daughter that I’d try to be there soon and added that if I wasn’t, she should go to sleep. I’d check on her later.

That didn’t go over well.

I turned my attention back to Ronan, but I heard a small voice at the doorway. “Mommy? Can you tuck us in here, in Ronan’s room?”

Offering a smile, I said, “Of course. Come here so I can give you a hug.”

She fell into my lap for a hug and kiss. Ronan’s other sister and his little brother weren’t too far behind. Eventually, Fiona, Ronan’s oldest sister also joined us. Taking turns to get a hug from me and to give Ronan a kiss goodnight, the siblings sat down on the floor next to Ronan’s bed.

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“Mommy?” Izzy asked, “Is Ronan going to be okay?”

Trying to be positive, I answered, “I hope so, sweetie. He had a few small seizures before we said prayers, and he’s had some more since. I’m going to stay with him in case he needs me, or in case…things…get... In case things don’t go well. But don’t you worry…”

Interrupting me, Izzy said matter-of-factly, “Mom. I have to worry. He’s my brother,”

I turned away. I didn’t want her to see me cry.

Continue reading "Things Will Only Get Better. But When?" »


Toward the Past

Backward clockBy Cathy Jameson

I was thinking about a friend last Thursday. Out of the blue, she texted me on Friday. Wanting to check in on Ronan and to offer a suggestion that may help him, I was touched that she reached out. With how busy I’ve been, I haven’t had a chance to talk to her yet. Her son is leaps and bounds ahead of Ronan and inching closer and closer to recovery, so I look forward to hearing more about what she has to say. I’ve liked other things she’s shared in the past, especially a blog she wrote called Backwards Day.  If you haven’t read it, I’d encourage you to take a few minutes to do that. I bawled like a baby the first time I saw it. I cried rereading it again last week.

I’ve been thinking about that blog all week and how backwards some of life has been. I had no intention of watching my child’s health and development spiral backwards, but that’s what happened when Ronan regressed. Before I knew how that happened, I went back to look at events that I documented on our family calendar – to the well-child appointment date compared to the date when seizures started. I’ve gone back in time to pore over the pages of our family photo album – to a baby picture where Ronan was smiling and interactive to the one that shows a droopy, expressionless gaze. I’ve found myself slowly flipping through Ronan’s baby book to look back at certain pages – to the specific page where I’d started writing down the dates of milestones that Ronan achieved to the blank lines showing where those milestones abruptly stopped. As painful as it was to go backward and to look for clues, I found what I was looking for and successfully connected the dots to Ronan’s vaccine injury.

Connect the dots
Written a decade ago, I documented Ronan’s vaccine injury story in a booklet. We sent it family, friends, and to new parents who wanted to know more.

I don’t do it as often as I used to, but over the years as I’ve tried to make sense of things, I’ve had to force myself to go backwards – to replay conversations I’ve long forgotten, to revisit actions I wished I’d never taken, and to relive Ronan’s vaccine reactions that I now know how to avoid. Some people say I shouldn’t, but in certain circumstances, I think it was wise to go backward. It’s then that I could plainly see what went wrong and when. I could also see where time and Ronan’s development stood completely still. Not wanting to continue that trend, I used past experiences to shape a new path – one that I’d hoped would catapult me and Ronan forward.

I try to go forward and do so always hoping, praying and believing that progress is just around the corner. But, some days, progress is nowhere to be found. Instead of tippy toeing toward more typical behavior and accomplishing those milestones that Ronan left behind, it feels like he and I are either at a standstill or worse that we are actually physically spiraling backwards again. Ronan is less aware of how far behind he is, but a setback, an illness, a rash of seizures like he had on Tuesday, or a returned fixation of 30-seconds of a Baby Einstein song played a minimum of 200 times a day can really do a number on me.

Continue reading "Toward the Past" »


Best of: Too Many Too Soon Too Little Too Late

GardasilWe're running Cathy Jameson's 2013 post today after The American College of Pediatricians  wrote that, There have been two case report series (3 cases each) published since 2013 in which post-menarcheal adolescent girls developed laboratory documented POF within weeks to several years of receiving Gardasil, a four-strain human papillomavirus vaccine (HPV4).1,2  (See here.)


By Cathy Jameson Cervarix

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.”

Continue reading "Best of: Too Many Too Soon Too Little Too Late" »


To the Autism Mom in the Waiting Room

By Cathy JamesonWomen hands

I see you. I see you sitting over there, but I won’t make any eye contact today. I won’t because I can tell it hasn’t been a great day for you.

Maybe you didn’t sleep well. Maybe your son didn’t either. Maybe that’s he’s been up since 3 a.m. which means you’ve been up since 3 a.m. also. Maybe in those early hours you’ve had to deal with poop, lots and lots of poop. Or stims. Or both. Maybe you’ve been cleaning up poop and listening to stims all morning long. Stims make your kiddo happy, but what a number they can do to your patience!

Whatever it was that set off your day, I hope tomorrow is easier. Because today looks like it’s been awful. And I’m sorry. And now you’re sitting there on your side of the waiting room hoping that no one will notice you or how tired, sad, and frustrated you are. I recognize that on your face and in the way that you’re sitting. I know that you’d rather be curled up in the fetal position in the corner, but that’s not an option. You’re trying to melt into your seat, and that’s my cue to keep my distance, to keep a friendly smile to myself, and to not even think of making any kind of contact with you. I’d like to because I’ve seen you in here before, and you seem like a really nice person.

The last time we shared the waiting room area, my son was the one with the off-the-wall behavior. Remember that? Remember his behavior and how it escalated? And then how long it took for him to calm down? I thought it would never end. As much as the other waiting room parents tried not to look and tried not to listen that morning, I know they couldn’t help but watch and listen. We must’ve looked like a train wreck. It was my turn to be mortified that day. Today, it was your turn.

Both times, no one scoffed. No one complained. No one judged. That’s because we all get it. We all live it. The frustration. The Broken hearthumiliation. The sadness. I’ve felt it. It washed over you once you knew that your son was safely in the back with the therapists. That’s when my heart broke into a thousand pieces for you, which is why I want to tell you something.

No matter who you are, those emotions are never easy to deal with. Add in some non-verbal regressive autism aggression? It’s far from easy. I know. But the way you handled your son this morning – his constant stimming, the loud outburst, then the intense yet understandable behavior right before the therapists called his name – that was incredible. You calmly guided your son. You quietly held yourself together. You stood there wishing you were invisible. I don’t know how you did it, but you also stood there full of grace.

I totally get why you need a break now and why you don’t want to look at anyone or talk to anyone or think about anything at all right now. You’re stuck here. With strangers. Feeling utterly and completely overwhelmed. In a waiting room.

Continue reading "To the Autism Mom in the Waiting Room" »


Waking Up to Vaccine Reality

I-wake-up-screaming-t
By Cathy Jameson

Welcome, new moms! We’re glad to have you join us…

I see vaccine-related posts all the time when I log in to Facebook. Not a day goes by that I don’t see some vaccine link being shared. I sometimes feel overwhelmed when I see that topic in my newsfeed. That’s because some days, the news isn’t good news - people are still being injured by vaccines, vaccine efficacy is waning (but we should still go out and get that bum vaccine anyway!), and mandates are looming. It can all be rather depressing. I’ll admit that I’m guilty of clogging my friends’ newsfeeds with all sorts of vaccine news and information, but that’s because when you’re a parent of a vaccine-injured child, being vocal about vaccines can easily become a habit.

Last week, logging onto Facebook was no different than other weeks. I saw posts about the Zika vaccine, about the Tdap vaccine, and about the DTP vaccine. I saw those being mentioned in some FB groups as well as on some of the autism advocacy and vaccine safety pages that I frequent. Not surprisingly, I saw those posts on friends’ walls, too. I expect to see that from certain friends, especially the ones who have a vaccine-injured child who is also on the autism spectrum. But last week when I saw that news pop up in my newsfeed, I didn’t cringe like I sometimes do when I see a vaccine link. I did a double take instead.

The posts that I saw were not being shared by moms like me. These moms were different. Their kids were different, too. The kids didn’t have seizures. Their weren’t in therapy. They weren’t in self-contained special ed classrooms either. It was a different population of moms fairly new to the online vaccine scene who were chiming in, and I couldn’t believe it. Typical moms of typical children were sharing articles about vaccine bills, about vaccine ingredients, and about the vaccine schedule. All out in the open and on Facebook!

I didn’t want to question why, but why? Why did these moms go from completely silent on what’s become a controversial topic to linking these sorts of articles to their FB walls? And why all of a sudden now? My mind was spinning.

Maybe they saw the 2016 schedule and were shocked at how many vaccines there are.

Continue reading "Waking Up to Vaccine Reality" »


Yes, Virginia, Your Vaccine Exemptions Are Safe…for now.

T JeffBy Cathy Jameson

Word spread quickly in several of my online groups that Delegates in the Commonwealth of Virginia had introduced a vaccine bill. Like other vaccine bills that have popped up in other states, HB1342 was a bad bill.

CJ insert

As quickly as the bill was introduced, it was assigned to a Subcommittee and added to the next Health, Welfare and Institutions Committee’s agenda. It was imperative that those who opposed the bill act quickly. Virginians wasted no time. Representatives were contacted. Travel plans were made. Parents, providers and many, many others helped to spread the word. I was one of those parents.  

Since I could get to the hearing where 3 minutes of public testimony was to be included, I drafted a short speech.

Delagate Filler-Corn, Dr. Stolle and other Members of the Committee,

“You know your child best.”

As the mom to five kids, I’ve heard that statement several times over the last few years. I hear that one and that I should always trust my mother’s instinct. I’ve made mistakes before when I didn’t listen to my instinct which is why I’m here today. My gut tells me that HB1342 is a bad bill. I’d like to tell you why.

This bill violates existing law that protects religious and parental rights. To take those rights away, something that so many in the Commonwealth have fought to secure, preserve and protect, is incomprehensible.

HB1342 not only violates religious rights and personal rights, it undermines our doctor and their ability to work with my children, including my son who was severely injured by vaccines. Finding the right doctor to attend to that injury took time. Our doctor understands my child’s healthcare needs well, not you, Dr. Stolle, nor any of the other members of this committee. This bill would prevent my son’s doctor from using professional judgement which would impede them from appropriately treating him. That, plus mandating vaccines while also restricting the existing medical exemption, which is what HB1342 would do, is unethical and would not serve any of my children well.

I could now cite a few statistics for the committee, like the fact that Virginia has a high vaccine rate despite already low exemptions rates, or I could remind you that those who manufacture vaccines have no liability for their product and that those who administer them can do so without being held accountable for any injury or death resulting, or I could point out that the CDC states that all vaccines come with risk, or I could make it clear to you that when there is a risk, there must always be a choice, but I’ll leave you with a final statement and a request instead.

HB1342 is an overreach of the government. I respectfully ask that you withdraw this draconian bill and refrain from introducing other bills like it.

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I never had to make that speech. Thankfully, HB1342 was stricken from the docket soon after the Health, Welfare and Institution’s Committee meeting started. I was overjoyed.

Continue reading "Yes, Virginia, Your Vaccine Exemptions Are Safe…for now." »


There Was a Pharma Had a Dog.

Pharma Bingo
By Cathy Jameson

Today’s post is inspired by a BINGO game a friend shared on her Facebook wall. The squares were full of cute ideas meant to keep kids busy during a snow storm. I saved the link thinking that it could come in handy for my kids—our area is expected to get 2 feet of snow. The boredom factor could hit an all-time high before the weekend is over.

The BINGO board I made to accompany this post isn’t to keep boredom at bay; it’s to be used whenever you read an autism or vaccine mainstream article, like the one I read late last week.

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Melinda Gates is frustrated with Donald Trump.  After reading her latest interview in the Huffington Post and why she’s miffed, I’m a little bit frustrated, too.

In that interview, Melinda bemoans the fact that The Donald is misinforming people. She goes so far as to say that his claim that childhood vaccinations can lead to autism is “ridiculous”. Gates also thinks that Trump should use his platform as presidential candidate to educate people. Isn’t he doing that, though, in making those vaccine-autism assertions that he’s making?

Yes, he is!

(Thank you, Donald!)

But the article refuses to cover Trump in a good light and instead takes a typical turn that many mainstream news articles take when vaccines and autism come up. That’s when the writer regurgitates a memo that the media has yet to stop circulating. If you’re new to the vaccine-autism scene, the message in that memo includes the following words and phrases and can be found in many a mainstream piece, including the one from HuffPo:

discredited

1998 study

British doctor

debunked

link between vaccines and autism

autism is not related to vaccinations

You’d think that by now that the mainstream news would have some new content for their pieces, but it’s the same old words, the same old phrases, and the same old “science” in every single pro-vaccine article after article after article. Those articles are not just frustrating to read, they are getting boring to read, too!

Continue reading "There Was a Pharma Had a Dog." »


Dream for Tomorrow

Cj 1 17By Cathy Jameson

When I wrote this two years ago, the first sentence was, “Today autism affects 1 in 50...” Today’s updated version includes a different autism rate. As much as I’d hoped that, by today, the rate would’ve dropped. But it hasn’t. Something else that I’d also hoped was that, by today, groups like Autism Speaks would to do more than just promote awareness. But they haven’t. And, I’d hoped that all of the presidential candidates would want to prevent autism in the future. But they don’t appear to care to.

With the higher rate and with the continued lack of concern, today seems so dreary. Sometimes it truly is. I need to wash today’s dreariness away. I will be sure to do that tomorrow…

Today, autism affects 1 in 45.  Odds are that more families will find themselves closer to an autism diagnosis today than yesterday.  Today doesn’t sound too promising, does it? 

Several times in his now famous speech, Martin Luther King, Jr. used the word today:

“I am happy to join with you today in what will go down in history…

…a great American, in whose symbolic shadow we stand today…

…we have come here today to dramatize a shameful condition…

It is obvious today that America has defaulted on this promissory note …

…as evidenced by their presence here today, have come to realize that their destiny is tied up with our destiny…

I say to you today, my friends, so even though we face the difficulties of today and tomorrow, I still have a dream.

I have a dream today.

I have a dream today.”

I have a dream also.  But my dream is for tomorrow. 

As far as autism is concerned and how it affects my son, today breeds dread and frustration.  It capitalizes on my fears.  The worry I have about autism and for my son keeps a tight grip on me.  It can strangulate my thoughts and shroud my thinking. 

Afraid of what isn’t being done for Ronan and for a great many other children, today brings no solace, just anxiety.  Looking outside of my own home, today doesn’t look so good in other places either.  Newspaper headlines in America promote ineffective flu shots as our best defense against a temporary sickness.  They sing praises for immature celebrities’ behavior while neglecting to address a growing national crisis.  Headlines scream Look here! Look there! But just don’t look at autism.  Look the other way instead.

How can they tell us to look away?  Autism is a crisis that affects thousands.  From one side of our country to the other, it’s crept into more communities than ever before.  But today in the papers, and within the groups that should care about it, the autism epidemic goes unnoticed.  So do the nightmares that come with it.  

So, I’m not living for today.  I’m not dreaming about it as Martin Luther King, Jr. did.  Instead, my dream is for tomorrow. 

Continue reading "Dream for Tomorrow" »


Hillary Clinton’s Autism Plan Fails to Impress

ExcludedBy Cathy Jameson

Hillary Clinton was First Lady from 1993 – 2001. During that time, the autism rate jumped from 1 in 500 to 1 in 250. The autism rate increased again while she was a New York State Senator (1 in 110) and when she served as US Secretary of State (1 in 50). The latest autism numbers from the CDC tell us that 1 in 45 are affected.

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Autism was not on my radar in the early 1990s. I didn’t give it a second thought in the early 2000s either. It wasn’t until the mid-2000s when my son, Ronan, was showing signs of the spectrum disorder that I fully immersed myself into reading everything I could about autism. In the hopes of helping other families, I shared much of what I learned with others.

From message boards to private emails to face-to-face meet ups at local and national autism conferences to being asked to write for autism-specific publications, I’ve shared a lot about autism in the last ten years. During that time, I don’t ever remember Hillary Clinton being part of, let alone a personal champion for, the autism community. In fact, it wasn’t until the last week of 2015 that I ever thought to use Hillary Clinton and autism in the same sentence, and that only happened after I saw a Bloomberg Politics teaser. I had my reservations that her plan wouldn’t be more than just a nice gesture, so I, like so many others, waited patiently to see what the presidential hopeful’s thoughts on autism would be.

I saw the plan,  and as the parent of a child with regressive autism, I’m not impressed.

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I reread the plan in its entirety and noticed something. Teresa Conrick gave a synopsis of the plan,  and she, as well as another parent also knee-deep in autism advocacy, made the same observation that I did. Nowhere in Hillary’s plan does it include autism prevention.

Why not?

Continue reading "Hillary Clinton’s Autism Plan Fails to Impress" »


Dear Hillary, Can We Talk?

Hillary Kids
CJ 1 3 Hillary A

By Cathy Jameson

I saw a teaser from Bloomberg Politics last week while we were visiting family on Christmas vacation. I tried to stay away from the news and relax, but when I saw that autism was mentioned in the headline, I took a minute to find a quiet place to read the link.

The link truly was a tease! Very little information was offered, but as the parent of a child with autism, I’m very much looking forward to reading what the former Secretary of State has to say. I’ll readily admit, though, that as the parent of a child with autism—whose autism is a result of childhood vaccines, I am hesitant to get too excited about the plan that Mrs. Clinton is about to unveil.

Clinton, currently a presidential candidate, was quick to point out in early 2015 that she, a grandmother of one, knows best about vaccines. As the mother of five, whose two sons were adversely affected by vaccines, I beg to differ.

I could be wrong, but with her past statement, I don’t believe that Mrs. Clinton is ready to fully support me or my son with autism.

For many parents, we clearly know that vaccines and autism went hand in hand – and not in a good way. Unless her plan includes preventing autism, which means also addressing the out-of-control vaccine schedule, I don’t hold out too much hope that her autism plan will be more than be a nice gesture.

CJ 1 3 HillaryI am tired about hearing that we should be doing something about autism and would rather actually do something about the disorder. I’d rather not wait for another “Autism President” to talk about a plan that will go nowhere. That said, I fully support what other people are saying we need to do about autism. Lisa Wiederlight’s recent proposal to the Interagency Autism Coordinating Committee (IACC),  a federal autism advisory committee, was spot on.  I can get behind her plan and hope that others, including Mrs. Clinton, will as well.

Wiederlight, Executive Director of SafeMinds and parent of a teenager on the autism spectrum – and someone who I can identify with, recommended creating four working groups, including one that sounds similar to one of the bullet points mentioned in the Bloomberg link – to provide support for parents/caregivers.

Continue reading "Dear Hillary, Can We Talk?" »


Family Ties

Church windowBy Cathy Jameson

Ronan had seizures soon after waking up on Christmas Eve. Far from home, the last thing I wanted to worry about were seizures. Taking turns early in the day, someone in the family stayed close to Ronan and sat “seizure watch”.

Extended family was also close by, so we had more sets of eyes and ears to keep watch over Ronan. The extra set of eyes and ears were most welcomed. Everyone generously took time to check in on Ronan.

Family is important to me. They always have been. I welcome their presence and look forward to seeing them. Since we go long stretches in between seeing each other, I also welcome observations they make regarding Ronan. Where I see the baby steps Ronan painstakingly makes, extended family tends to see great strides in his development.

As in the past, their recent observations have not been disappointing.

Extended family notes that Ronan is more aware. He is a bit more vocal. They see an incremental increase in awareness to what others are saying to him, too. They see that he understands and complies more readily to requests being made of him. They like that Ronan is responding to what others are asking him to do and that he’s participating more in group activities, like family prayers. Before, he wasn’t fully cooperating or showing any interest in joining us. He’d wander off, either physically or mentally, showing no interest in what the rest of us were doing. Some say it’s as if there’s more of a family feeling about him.

Something else that some family is noticing is a change in Ronan’s facial expressions. His expressions and his demeanor seem more typical. It’s only after Ronan tries to express himself, and fails to, that Ronan’s difficulties become observable again. While those difficulties still exist, our extended family is encouraged by what they see. I am, too.

We knew that this journey would include hurdles and detours.

We knew that it would be a marathon and not a sprint.

Continue reading "Family Ties" »


Coming of Age with Autism

Coming-of-ageBy Cathy and Fiona Jameson

This conversation started when Fiona, my 14-year old daughter, and I were driving home from grocery shopping on Friday afternoon. We continued to add to the conversation after we got home. I wanted to share it for today’s Sunday post. It’s dedicated to Ronan. He turns 13 tomorrow. Happy birthday, Ronan! May you continue to bring us hope, happiness, and joy.

xo, Cat

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Mom, can you believe Ronan’s birthday is on Monday?

I know. I really can’t believe it.

He’s going to be a teenager! I should tell him about things that will happen when he’s a teen.

What kind of things?

Like what to watch out for when he’s out of middle school. Like which people he should hang out with. Like which people he should not hang out with. I’d tell him about what’s trending and which things to follow.

You know that Ronan doesn’t understand a lot of that and that he’s not interested in the things you are. Your teenage years could be very different than what his might look like.

Yeah. I know. But I envision him getting better.

I do, too, honey. I always hope that he will get better.

When he’s better, Ronan will be able to do a lot more than he does now. I need to make sure he doesn’t get in trouble with his friends for talking too loudly during class. He needs to make sure to follow the rules. He’ll have to get used to new stuff like being able to adapt to changes in his environment and routine. I need to help him wear the “cool” clothes, too. He’ll need to get a new phone like an iPhone, not to play on like he does on our old phones but to use it to call or text people.

Well, Ronan can’t talk yet, so I guess you have faith that he someday will and that he’ll need a phone to tell people what’s on his mind.

Yes!

Fiona, do you ever envision Ronan being able to do other typical teenage things?

Like what, Mom?

Like…being interested in girls, maybe? Or try out for sports?

Oh, yes! I would make Ronan to show me a picture of who he likes. I’d ask him to tell me about the girl. I would let him know which girls I think are nice and also warn him who not to hang out with.

As for sports, I want him to try to do soccer or baseball or bowling. If it’s soccer, I could help him since I’ve played it before. If it’s baseball, I’d ask my friend, Josh, to help. Josh played baseball before, and he knows Ronan pretty well. And I totally trust him with my brother. Ronan also loves bowling on the Wii. We should take him to the bowling alley more often. I know that he’d love that!

You know Ronan took notice of the bra and undies department at the store last week.  I was shocked when I saw him do that. But then secretly, I was all kind of excited. It make me think that maybe parts of Ronan are typically developing.

Continue reading "Coming of Age with Autism" »


Autism and Behavior Therapy: Taking the Next Step

ForwardBy Cathy Jameson

Ronan usually wakes up sluggish around 9am. He woke up bright and early at 4am on Monday last week. I had woken up just a few hours earlier because of a nightmare. I tossed and turned through the early morning hours, but ended up getting only 3 hours of sleep. I knew it was going to be a long day for both us. Thankfully, extra help was on the way. Ronan’s therapist would be here at 10am.

Ronan was in good spirits despite the o’dark-thirty wake up. He continued to be chipper and active when his therapist arrived later that morning. Explaining how the day had started, she was pleased to see that Ronan was so happy, but she knew he’d soon tire. With that in mind, we rearranged and shortened the day’s agenda. Even though we’d scaled back some of the activities, we kept with the plan to go out into the community.

For the last few weeks, after watching Ronan display an increase in negative behaviors when we were in town, we’ve been practicing going out. In the past, some outings with Ronan have ended terribly.  Not every one of our outings turns into a horrible, terrible, no good, very bad day, but toward the end of the summer, Ronan’s behaviors were consistently tanking. With each attempt I tried to get Ronan out the door, in the car, out of the car, to the store or to wherever it was we were going, he got more and more frustrated. He also started to become somewhat aggressive.

Ronan doesn’t like to be frustrated, and I don’t like to see him get to that point either. When the every-now-and-then negative behaviors began to occur more frequently, a friend of ours suggested that I look at Applied Behavior Analysis (ABA) therapy again. It’s worked for us before, and since I’d tapped out of my knowledge and ability to redirect Ronan to more appropriate choices and behaviors, I knew that it was time to ask someone else for help. I’m glad that I did.

Continue reading "Autism and Behavior Therapy: Taking the Next Step" »


Vaccine Discrimination in America


Sneetch unvaxedBy Cathy Jameson

I knew it was coming. With how 2015 was full of fear and vaccine bullying, I’m not surprised that vaccine discrimination would be next. Many of us have already experienced it privately in one way or another, some by a pushy physician at a medical clinic and others by a bossy school nurse, and it looks like more places are officially adopting the practice.


Illinois hosp vax

No matter where or when it happens, being discriminated against is uncomfortable. When that discrimination includes judging, trampling ones parental rights, and denying medical treatment, it’s more than uncomfortable. It’s downright frightening.

I’ve yet to be completely turned away from a clinic or from receiving services after being asked what my child’s vaccine status is. Most of the time, it’s no one’s business to hear that sort of personal information. Other times, when vaccines could be relevant, I tread lightly when offering that information. If I fear that treatment could be jeopardized, I tend to begin with a caveat, “Because my son suffered a vaccine injury, we do not completely follow the recommended vaccine schedule…” and hope that the person who’s listening is actually listening to what I’m saying. Most of the time I am being heard, but one night several years ago, I was not.

That happened when I brought my daughter to the Emergency Room. She’d been fighting a viral respiratory infection for just over 24 hours. With how young she was at the time, I knew it could turn into a serious situation. I’d consulted with our pediatrician, followed her suggestions, and was able to bring some relief during the day. Unfortunately, though, things went from bad to worse - and quickly - once night fell. Knowing that she needed help, I bundled my baby up and headed to the ER.

We were ushered back right away, but instead of treating my child, the ER doctor we were assigned insisted on wasting time. That began after his question, “Are vaccines up-to-date?” was answered with my, “No, we’re selectively vaccinating.” response.

At that point, the doctor completely ignored the medical emergency that my daughter was presenting and opted to berate me about vaccines. In an attempt to belittle me in front of the team of night-shift nurses, who were standing at the ready waiting for the doctor to respond to and act on my daughter’s current condition, he continued to question me. The nurses said nothing, and when the doctor continued his tirade, the nurses looked down. Knowing my rights, I didn’t let that man’s words bother me. I kept my head held high and calmly waited for the doctor to finish the verbal assault.

Continue reading "Vaccine Discrimination in America " »


Giving Thanks for Autism Parents

GratitudeBy  Cathy Jameson

This post is dedicated to those brave parents who came before us. Thank you for blazing a trail.

Ginger Taylor’s Facebook status earlier this week caught my eye. For those who do not know Ginger (see here) or the work she does in our community, normally, she is the one offering help. This week, she was asking for it.

ATTENTION PARENTS WHO HAVE BEEN DOING THIS CRAP LONGER THAN I HAVE!!!

In 2004 when I got here, we met in yahoo groups to figure out what the hell had happened to our children, and how to help them... remember?

Any one remember those groups? Where we all meeting for autism biomed info BEFORE Evidence of Harm came out?

I HAVE TO FIND THOSE MESSAGES! The first mom who helped me... I have to find her and thank her! It was on one of those boards!

-

2004

That year I, too, began to ask others for help. I knew that Ronan’s doctor wasn’t going to be the one to provide the answers that I needed, so I did what so many other parents had to do: reached out to the world wide web for guidance.

Like Ginger, I joined, read, and began referencing hundreds of posts on message boards. With the information I would find and read online, I’d later run over to our local community college library to continue to read. I read scientific journals. I scanned through medical textbooks. I requested books through the state’s interlibrary loan system. I checked out the few autism books available at the time and searched other neurological conditions while continuing to read and reference information on the web.

Continue reading "Giving Thanks for Autism Parents" »


Shared Autism Resources

Share secretBy Cathy Jameson

I love it when I find a helpful book, magazine, or resource that I can share with others. I love it even more when I can contribute to that helpful resource. That’s happened a few times outside of what I share here on Age of Autism. I’m always grateful for the opportunity to share my thoughts and my family’s experience other places. I am especially grateful when I get to do that within the pages of The Autism File Magazine.

One of Ronan’s doctors saw a recent issue of the magazine that showcased Ronan on the front cover. She asked for a copy of it, so I told her I’d print the article for her. She said that would be great, but she really wanted a framed copy of the front cover photo. She wanted to hang it in the waiting room of her clinic so that all of her patients could see it. I can’t tell you how honored I was to know that one of Ronan’s most helpful providers wanted to show us off.

Other Age of Autism writers and long-time AofA supporters have also been featured in The Autism File Magazine, too. If you haven’t seen this magazine yet, here’s a description of the publication from their website:

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.”

 

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Autism Super Sibling: "Worth It!"

Suyser sisterNote: Thank you to Miss Fiona Jameson, daughter of our own Cathy Jameson, for this wonderful post.

By Fiona Jameson

The topic of a person’s worth came up during a recent discussion in one of my high school classes.  We were talking about how some people assume that kids with disabilities are not able to think because they have cognitive developmental delays.  That assumption is false.  

Kids with disabilities are able to think.  Some kids with disabilities have some level of being able to choose for themselves.  Some are able to ask for help and can also express emotions.  I thought this was a great topic to discuss because it pertained to a very interesting lesson and because my brother has given me insight about it.

The teacher and my classmates know a little bit about my brother, Ronan.  They know that he has autism and that he is non-verbal.  They know that he needs help with lots of things like going to the bathroom, getting dressed, and being safe.  I think that’s why the teacher asked me specifically during our discussion, “Fiona, do you think Ronan is able to form thoughts in his mind?”  I immediately thought about how Ronan gets a thought in his head, like that he wants to eat a cookie, and he acts on that thought by asking for help to get the cookie.  I was excited to answer her, “Yes, he is!”  I was excited also because I felt like the teacher actually understood Ronan and understood why it was important for me to talk about him in class.   Fiona Ronan

I’ve been able to share more of Ronan’s story in class.  I share that he has value just like I and my classmates do.  Some people look at Ronan and might think that he doesn’t know how to act around other people or do things like “normal” people.  Well, sometimes, Ronan doesn’t know how to act around other people or do things like “normal” people.  That’s where I tell people that Ronan may be different, but he’s still a person.  He’s just as important and worth being given respect just like you, me, and everyone else.  

Ronan is worth fighting for.  He’s worth being cared for even if it takes a lot of time and money.  He is worth being loved for who he is.  As his sister, I’ll make sure that someone always fights for him, cares for him, and loves him.    

Fiona Jameson is a freshman in high school.  She loves to play volleyball and had a successful season playing on the JV team.  Fiona hopes to be a photographer, interior designer, baker, professional volleyball player, and a Mom when she grows up.  


Your Life Narrated by Me, Your Mother

Retro narrationBy Cathy Jameson

I noticed something the other day.  I talk a lot.  I talk more now than ever before.  It’s not all the time that I’m a Chatty Cathy, but when I’m with Ronan, I don’t shut up.  I am still somewhat reserved other times like when it comes to first-time meet and greets with new people that I get to meet.  Other times, though, I’d rather sit at the back of the group, out of sight and nestled a corner or in the back row. I can’t do that when it comes to taking care of Ronan, though. That’s when I don’t mind sticking my neck out to be seen.  Nor do I mind raising my voice so that I can be heard. 

I realized how much I talk when I’m with Ronan when he and I started out last week to get to an appointment.  I caught myself non-stop talking while I was holding Ronan’s hand.  As we walked into the therapist’s waiting room I said, “Keep going, you’re almost there, step over the toys, careful…careful. Sit down, hold on, stay with Mommy.  You did it!”  After we sat, I stayed close to Ronan stroking his back while we waited for his name to be called. 

The video playing on the television was a tad loud, as were the other patients and their siblings who were also in the waiting room, so I leaned in and quietly spoke to Ronan, “You like this movie?  It’s called ‘Cars 2.’  Remember we saw it at the theatre with Daddy.  Oh, look!  That part made you laugh.  Hey, it’s your turn now.  Stand up, let’s go.  Come on, watch your step.  Down the hallway, here you go!  Okay, bye now, Buddy.  I’ll see you in a little bit.  Kiss.” 

How many times have I done that—given a play-by-play of exactly who, what, where, when and why? And did I really need to narrate the entire trip into the clinic and into the therapy room?  Did Ronan care that I was observing and noting all sorts of things as we went?  Did he see all of it as we went by?  Did he hear it?  Of course, he heard it.  But, I wonder, does Ronan tune me out like he seems to tune out so many other things in his environment? 

Why do I think I need to state every step and every action?  I guess part of it is because I’ve had to remind Ronan several times about the same thing (walk OVER the toy, not ON it; and put your cup in the sink, NOT the trash can).  Maybe I talk so much because I want a little bit of feedback. Ronan has some sort of understanding of what’s going on in the world, but, since he’s still just barely pre-verbal, the only reliable feedback I get is from me as I talk to myself. 

Who knows, though, maybe with all this chit chat that I do for Ronan will have him one day spontaneously respond, “Ma, cut it out.  Okay?  I can do it by myself now.  Watch me.”

I already knew that I rolled out a constant narrative other places.  These situations are different than the daily action-packed descriptions that I just realized that I do.  For the other times, I’m consciously aware of what I’m saying.  In fact, if I don’t speak up I feel like it’s a disservice to Ronan.  Like when I take Ronan to a social outing at a busy park or to a fun gathering for my typical children.  Before a genuinely curious but terribly mannered kid has a chance to rudely stare or squawk at the strange-acting child (mine) I start a dialogue with Ronan, “Hey, Buddy.  Do you want to go over there? (reaching for Ronan’s hand and walking him to the jungle gym).  Hold my hand.  Let’s go!  Steady now.  We’re almost there.  You’ll love to climb that.”  And off I scurry with Ronan—hoping to be far away from the gawking kid who, was never told that staring at other people is rude, and closer to more activities that Ronan is able to do at his own rate with success. 

Of course, it could be a wonderful learning moment for the staring child to know why Ronan looks a little bit odd and acts a whole lot different than other kids, but I have enough teaching and coaching to do for my own child. 

Continue reading "Your Life Narrated by Me, Your Mother" »


Autism Advocacy: Who Speaks for You?

SPEAK TRUTHBy Cathy Jameson

I haven’t always been an outgoing person.  When I was younger I was somewhat shy.  I would avoid raising my hand in class and would steer clear of a crowd if I saw one ahead of me.  Staying quiet, I preferred to be in the background.  As the parent to a non-verbal child with regressive autism, I no longer have that luxury.  I cannot remain silent.  I have to speak up.  I have to speak for Ronan and also for myself. 

When Ronan first lost his ability to talk, I looked to Autism Speaks as a resource.  Founded in 2005, I no longer believe that they speak for me nor for Ronan. 

 

Screenshot from AS’ website, 17 Sept 2015

My son wanders.  He has seizures.  He requires round-the-clock care.  I do my best to find and support groups in the autism community that hold the same values and expectations that I do.  It’s a shame that an organization as large, profitable, and recognizable as Autism Speaks made a statement that once again refused to acknowledge and accept what so many parents have come to discover - that vaccines did in some way contribute to their child’s autism.  Their latest statement reminded me to be careful which groups and which people I pick to speak for me and for Ronan. 

Since my son, who was affected by vaccines and who has autism, can’t speak for himself, I must advocate for him.  I do that with the help of my husband and with professionals we hire to assist us.  Typically, it is I who oversees and ensures that Ronan’s medical, educational, and therapeutic needs are being met on a daily basis.  If something isn’t going well, I have to speak up.  I have to address the issue.  I have to communicate that there is a problem.  Thankfully, the team of people we consult on a day-to-day basis for help and for treatment do whatever they can to assist us.  I value our team’s input and let them know how much they are appreciated as we work toward common goals:  to help Ronan, to teach him useful skills, to bring him to better healthy—because autism is medical, and to bring him opportunities so that Ronan can be as active and as happy as he can be. 

When we’ve gained new people as Ronan moves out of one phase and into a new one, I’ve had to learn to navigate those new phases and new demands.  During that time, I tend to ask a lot of questions.  Some days I’d love to be quiet, but being quiet doesn’t help Ronan.  So I find myself speaking up and searching for answers.  In my search, so that I can better advocate for my son, I have to once again go outside of my comfort zone and look to others for help.  I sometimes have to look beyond my local area for help.

Continue reading "Autism Advocacy: Who Speaks for You?" »


The Sunny and Not So Sunny Days of Autism On the Airwaves

Sesame Street Banner

By  Cathy Jameson

It would be difficult, if not impossible, for someone to create a character that depicts all that autism encompasses.  From the very high functioning, who are able to live day-to-day independently, to the lower functioning individuals, who will never be able to live on their own, there’s a reason why autism is called a spectrum disorder. 

Affecting one’s language skills, social skills, and other developmental skills, the disorder has been identified in 1 in 68 children.  Using data from children born in 2002, the current rate of 1 in 68 was announced in the spring of last year.  Many believe that the autism rate is much higher than what the officials chose to present.  Data used to calculate the current rate does not include my son nor other children.  What about the many children who’ve fallen onto the spectrum since 2002?  They exist.  When will they be included in the national number?  My guess is not for awhile.  I don’t think the public is ready for that. 

It’s no secret that the autism rate is rising, but I think the public’s been kept in the dark about it and about how challenging autism is. 

 

I’d love for more people to understand that the autism my son lives is different than what is shown on air.  I think it would help.  It would help him—people would see him in a new light and want to help him.  It would help us—people may not be so quick to judge.  And it would help the public—they might then realize just how severe this disorder can be.   

My son is lower functioning.  The autism is severe.  He is non-verbal.  He suffers from seizures.  He needs assistance to eat, to bathe, and to use the toilet.  He’s in 7th grade and is still in diapers.  Our friends and family understand how great his needs are, but I fear that much of the public has yet to catch up.  Catching up is hard to do when the autism rate is downplayed on the news.  They can’t catch up when autism is depicted on popular television shows and movies with mostly highly intelligent and verbal characters.  The public cannot know the autism reality that my son and so many others like him live if that side of autism is not talked about out in the open. 

Continue reading "The Sunny and Not So Sunny Days of Autism On the Airwaves" »


Saying No to the Flu Shot

No thanksBy Cathy Jameson

Last week, my son received a phone call.  Ronan is non-verbal and couldn’t answer the call himself,  I spoke on his behalf as I have done for years now.  I tried to speak on his behalf when the phone rang again.  But I was not given the option. 

“This is Care Line.  We’d like to speak to the parent or guardian of Ronan Jameson.  If you are the parent or guardian of Ronan Jameson, please press 1.”

1

I hung up after hearing the next prompt.

“You may be aware that flu season is just around the corner.  We’re calling you today to share some life-saving information, but first, we need to know if Ronan Jameson has had his flu shot this year.  If Ronan has had his flu shot, please press 1.  If he has not had a flu shot, please press 2.”

I wanted more options.   But was given only two. 

Bye-bye.

I don’t usually hang up on people.  I’ve never hung up on anyone from Care Line (not the real name) because they have been helpful in the past.  They’re available to me 24 hours a day and 7 days a week.  I receive immediate guidance from someone on their medical staff.  They provide support and never judgement.  One staff member in particular has been extremely helpful.  She and I have spoken several times over the last few years.  She knows Ronan’s extensive medical history to include the reactions he had from vaccines.  She also knows my opinion about vaccines.  But each year around this time, she’s asked to discuss the flu shot with her caseload. So each year around this time, we “discuss” it by me once again politely declining the shot before she has a chance to read whatever statement that Care Line has drafted her to read. 

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When Autism Doesn’t Speak

Wrong numberBy Cathy Jameson

On a rather busy morning last week, the phone rang.  As I reached for it, I cleared my throat and said, “Hello?”

“Good morning.  May I please speak to Ronan Jameson?”

I hesitated and was able only able to utter, “Uh…”

I immediately felt uneasy and somewhat annoyed.  Most everyone who calls the house knows that Ronan cannot speak.  Who was this person was and why did she need to talk to my non-verbal son? 

I politely asked, “Who’s calling, please?” 

“This is Cindy.  I’m calling from the diaper service company.”

“Oh.” I said.  Deciding whether to put Ronan on the phone or not, I glanced to where he was.  Sitting on the couch with iPad in hand, his favorite movie playing on the DVD player, and breakfast just served on the table behind him—a gluten-free feast fit for a king—I decided not to put Ronan on the phone.  Had it been a telemarketer, I may have said, “Sure.  And good luck!” before passing the phone to the boy who lost his speech several years ago.   

Turning away from Ronan, I told Cindy, “Well, Ronan can’t talk.  I’m his Mom…what is it you need?”

Cindy stammered.  My response must have caught her off guard.  She said, “Well, let me leave a note in the file that we should talk to you instead.” 

I could hear her typing as she tried to regain her thoughts.  She was calling about the next shipment date but had gotten so flustered.  I took the call and her oversight it in stride but wondered if Cindy could tell that I was faking a smile while waiting for her to proceed with the call. 

Other representatives have always asked for me directly, but I did not protest her adding that Ronan can’t talk to his file.  Lack of typical speech is something worth noting.  It may have been news to Cindy, but it’s something we have been addressing for quite some time.  Sign language, flash cards, labeling everything in the house, narrating every action, emotion, and item Ronan sees, smells or touches, we flooded Ronan with words as soon as he went silent.  Despite our efforts, though, Ronan hasn’t regained speech. 

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October is National Vaccine Injury Month: Five Things You Can Do

5 numberBy Cathy Jameson

Vaccine injury happens.  It does not discriminate.  It can affect the young, the old, and the healthy.  Sadly, it isn’t as rare as we’re lead to believe.  If you haven’t had the misfortune of being injured by a vaccine, count yourself blessed.  My son wasn’t so fortunate.

When I learned that my son was injured by his vaccine, I found very limited information on what to do next.  In my quest to learn more, I discovered some important things.  I’d like to share some of those ideas with you today.

1 – If you’re considering opting for vaccines, read about them.  Become as fully informed about them as you can.  If it’s for you, look at the adult vaccine schedule.  If it’s for your child, you’ll want to check out the childhood schedule.  Both can be found on the Center for Disease Control and Prevention website.  Take time to know the dosage(s) recommended, the timing of the dosage(s), the ingredients of each vaccine, the side effects of each vaccine, and the injuries that the government recognizes. 

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Things Said That Can Make the Parent of a Vaccine Injured Child Cringe

Don't Say That AgainBy Cathy Jameson

Sometimes, the hardest thing for the parent of a vaccine injured child to listen to isn’t their own child’s response to pain; it’s what comes out of another person’s mouth that can be difficult to hear.  Like this admittance that comes after advice from the parent of a vaccine injured child has been given:

“I went ahead and got his shots…” 

Of the few that I’ve heard, that response is one of the hardest ones to hear.  Personally, I think that one sounds like a cop out, too.  “I went ahead and…” doesn’t eek confidence and has a smidgen of guilt added.  When it’s said to the parent of a vaccine injured child after we’ve been sought out, and after facts have been laid out, after websites, and books and journals have been referenced, and after we’ve included the retelling (and subsequently, the reliving) of our own child’s vaccine injury, the response, “I went ahead and got his shots…” actually kind of hurts.  Now, yes, advice certainly does not have to be taken, I understand that, but when the other parent who was so afraid and so worried and somewhat doubtful about vaccines came to me for information but ends up doing the exact opposite of what I suggested, yeah, that hurts.

I’d like to believe this one, but when I hear this, I’m the one who has doubts:

“Well, she got her shots and turned out just fine…” 

I would love nothing more than to believe that statement.  But I can’t when the child who received the shots ends up with signs of eczema, unexplained allergies, attention issues and asthma that didn’t exist before. 

To me, “just fine” means there are no reactions whatsoever.  That means no fever, no swelling, no joint pain, and none of any of other “mild” vaccine reactions that the CDC lists on the vaccine package insert.  “Just fine” also means no resulting eczema, sensory issues, allergies, asthma, attention issues, sleep issues, changes in personality, juvenile arthritis or diabetes, and no need for accommodations to be made in school or home.  

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Suit Up for Autism Toileting Success

Toilet house
What our homes can feel like, when toilet training our kids with ASD.

By Cathy Jameson

We've hit a snag in the clothing department.  Ronan has plenty of clothes, but about a month ago, Ronan preferred not to wear them especially the ones that cover his nether region. During this de-robing phase, it wasn't just his clothes he was taking off—it was also his diaper that I’d find on the floor.

At first, I thought maybe we had some defective diapers.  The Velcro tabs weren’t sticking as well as before.  But then, the longer it went on, it seemed like a game for Ronan:

Get undressed.
Saunter casually passed Mommy.
Watch Mommy's eyes widen.
Walk away as if being naked was a normal and acceptable every-day activity.
Then, watch Mommy run all over the place to find what’s been left behind.

The faster I’d leapt to my feet to find Ronan's clothes, I realized that Ronan's game wasn't over.  I'd find his clothing and diaper, which was dry, but Ronan wasn’t done having his fun.  He’d finish the game with a laugh after fighting like the dickens while I attempted to get him dressed again.

This happened every few days.  Then it began to happen every day and several times a day.  Then it happened on a day we had guests over.  New guests.  Who'd we never met before.  Thankfully, the guests were aware of Ronan, the autism, and the need for diapers, but imagine my horror as in walks a half-naked Ronan to the dining room where we were sitting and chatting.  To say that I was mortified is an understatement.

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Labor Day and the Full-Time Autism Parent

Opp cost
By Cathy Jameson

I went into the education field over twenty years ago.  Conceivably, had I continued to teach, I might soon be eligible to retire.  I don’t think about retirement like others in today’s workforce think about retirement.  That’s because I left my field long before I ever expected I would.

Instead of soon retiring from what I’d hoped would be a life-long career, I found myself in a different role.  It’s a more permanent one that comes with no salary, no benefits, and no 401(k).  The role I have now is full-time caregiver for my child.

More and more parents today are finding themselves in similar roles.  While some may be able to juggle part-time work or a full-time job while caring for a severely affected child with autism, I have not had that chance.  Ronan is non-verbal.  He has seizures, and he has low energy levels.   His week is peppered with therapy and with a shortened and modified school day.  He is home more than not, which means that I, too, am home with him.  Being able to afford the round-the-clock care that Ronan would require in order for me to step out of the home and work again is nearly impossible. 

I do work, as does every stay-at-home parent, but I don’t know if I could actually put a dollar sign on the labor that is required to care for Ronan.  I have read that over a child’s lifetime, it costs parents $245,000 to raise them.  If that child has autism, costs can exceed $1.4 million  over their first 18 years.  Even if I had made my way back to the teaching field, I’d be hard pressed to find a job that would cover those costs. 

Today, instead of writing lesson plans, grading papers, and developing curriculum, I’m home.  At home, I’m overseeing Ronan’s therapy, medical appointments, and his wellness.  I certainly couldn’t do what I have had to do for my son and for my family without the help of some of the people who’ve graced our lives.   We have quite a team of people, specialists, providers, and supporters to assist me with Ronan’s needs for which I am grateful. 

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Baby of Mine

Naked babyBy Cathy Jameson

I got to hold a newborn.  I held him again a few weeks later.  It was an exquisite feeling to hold this child. 

The new life.

His perfect little body.

That newborn baby smell.

The endless opportunities he will have.

I’d attended his baby shower several months earlier.  I bought his mom, a young twentysomething, more than I should have but that’s because I was thrilled to support her.  With autoimmune disease in her family history, as well as having had to care for a family member with autism, she was rightfully nervous.  I felt it necessary to offer as much support as I could as she prepared to bring a child into the world. 

Her own history, plus knowing our family well and the medical path that I had chosen for my older children, prompted her to ask questions and to search for answers.  Long before she found herself preparing for her son’s birth, in a quest for knowledge, she’d decided what she would do when it was time to raise a family.  Not only did she decide what she would do, recalling my experience with my children, she also decided what not to do.  Instead of following recommended schedules and standard American practices, she would be as healthy, organic, and natural as she could.  She would be as free from everything “standard” as she could be, which also meant no vaccines. 

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Talk Talk

Speak_outBy Cathy Jameson

I wonder what Ronan’s voice would sound like if he could talk.

Ronan’s youngest sister randomly uttered that out of the blue last week.  Hearing that said out loud stopped me in my tracks.  It’s something that I think about regularly.  The difference between her saying it and my thinking it is that I know what Ronan’s voice sounds like.  Having only known Ronan to be non-verbal, my 7-year old doesn’t remember the husky voice, or the twinkle in Ronan’s eyes, or the way he’d light up a room when he entered it.  She only knows Ronan to be mostly quiet, somewhat detached, and that he prefers to be off on his own. 

It is very, very rare that we hear any words from Ronan these days, including hearing the words he could say years ago.  Spoken words are nonexistent.  Ronan can vocalize and does so frequently, so we encourage Ronan to continue to vocalize those sounds.  We do that always hoping that they will turn to verbalizations.  But he can’t talk like his siblings do.  He can’t verbalize the thoughts, opinions, fears, and feelings he has.  He can’t speak up for himself like other kids can.  Ronan can communicate with a speech output device, but that device, as high tech as it is, is not Ronan’s true voice; it’s a computer generated string of prompted words that lack affect and emotion.   

That husky voice, the twinkle in his eyes, that way he could captivate an audience with just his presence.  I miss it, and my youngest daughter yearns to experience it.  We pray that one day speech will return not just for her benefit, but for Ronan’s.  Ronan tries hard to communicate the words he knows when he signs, when he types, and when he uses that voice output device.  Those attempts sometimes lead to success, but they can also result in dismal failure. 

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One Perfect Day Indeed

Surf Event Surfers Healing Logo
By  Cathy Jameson

A day on the beach

Fulfilling one man’s vision

For kids with autism

To spend time surfing

Made for one perfect day indeed.

For some, autism is part of life 24 hours a day, 7 days a week, 365 days a year.  It takes no breaks.  And it doesn’t go on vacation.  For Ronan and for families like ours who have to juggle sensory issues, major communication delays, GI problems, and seizures day in and day out, sometimes we need a break from life.  Surfer’s Healing gave us the chance to relax, to take a break, and to live, if only for a moment, like some other families do. 

 

Every child is unique, and every child deserves a moment in the sun. –Izzy Paskowitz

Even though it is just for one day, when I found out that Surfer’s Healing would be on the east coast again this summer, I made sure to register Ronan for one of the camps.  The day is like no other, and the people who make that day happen understand just why kids like mine need it. 

It was through their experience of taking their son with autism surfing that Israel “Izzy” Paskowitz and his wife, Danielle, founded Surfer’s Healing.  Since it began in 1996, Surfer’s Healing has given thousands of children with autism “a chance to encounter the waves, to challenge themselves, to try something new.” 

But they do so much more than that.

From their website:

We take kids with autism surfing.  We paddle out together on tandem boards to watch the waves that come our way.  That’s what we do; that’s what we love. 

On the surface, our contribution seems simple:  each year, our volunteer-staffed camps give over 4,500 children with autism and their families a fun, engaging day at the beach.

But go deeper, and you’ll see that a quiet revolution is taking place.  Through the simple act of riding waves together, we’re defying the status quo. 

When we help kids get up on a board, we’re challenging preconceived notions of capability.  When we encourage participants to dive in, we’re empowering them to engage with the world. And when we ride the waves together, we’re affirming that every person is a gift. 

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Back-to-School Shots

Back To School Vax Exemption
By Cathy Jameson

We shared this post about back-to-school shots in September of 2014.  Before more schools begin another academic year, we thought we'd update the post and share it again. 

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Ronan started school this week.  He was severely affected by vaccines.  He’s non-verbal, completely dependent on others and has autism.  Because of other medical issues that stemmed from the vaccine injury, Ronan’s on a modified school day only able to attend school for a few hours a day and only a few days a week.  Before this school year started, I dropped off some paperwork to the school:  Ronan’s health care plan, his seizure plan and his vaccine exemption form.  Until I’m assured that vaccines truly are safe and effective, that vaccine exemption form will accompany him each year until he graduates. 

Back-to-school letters from school administration typically include a cheerful welcome.  An announcement or two about what to expect on the first day back and a kind request to drop off school supplies including any remaining forms might be added in the letter, too.  Ronan’s school recently sent out a back-to-school announcement.  Included was a memo about ‘back-to-school’ shots with a message that made it sound like he had to get them or he wouldn’t be allowed to attend school.  I appreciate the gentle reminder to wrap up our summer fun, but I do not care to be told incomplete and inaccurate information.  I especially don’t like it when that sort of information is demanded as the tone of the messages I received most certainly was a demand.

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We the People

American_flagBy Cathy Jameson

While driving to the grocery store Friday morning, I tuned into a national talk radio show.  I was just about to turn the station to find some music to listen to when I heard the announcer say “…A We the People petition…over 100,000 signatures…”  Instead of turning the dial, I turned the volume up.  I thought to myself, No way!  Are they talking about the forced vaccination petition we all signed?  The one we finally got a reply on this week?  Imagine that.  It made it to the national news!

I was wrong.  The petition featured in the news story was not about the forced vaccinations petition that I signed several months ago.  It was a petition asking that justice be served for Cecil the Lion.  Well over 100,000 signatures were obtained within days of the petition being posted. 

Well over 100,000.

Within days.

No glitches.

No joke.

While I am all for protecting life, including the lives of animals in the wild, after hearing the news story, I was baffled.  More American citizens quickly jumped at the chance to support the legacy of a lion than stood up and signed a petition against forced vaccinations

We The People

“We petition the Obama Administration to: 

PROHIBIT ANY LAWS MANDATING THE FORCE AND REQUIREMENT OF VACCINATIONS OF ANY KIND. 

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5 Reasons to Watch Trace Amounts

Suyser sisterBy Fiona Jameson

Mom’s helping Ronan this evening.  He’s had a few seizures.  So, while she’s staying close by his side, I thought I’d help her get a Sunday post ready. 

I saw Trace Amounts when Eric Gladen was in Washington, D.C.  Half-way through the movie, I leaned over to my Mom and said, “I’ve got to hug him when this is done.”

Mom asked me, “Why?” 

I told her, “Because he’s been through so much.” 

I got to tell Eric that when the movie was over.  I told him I learned much more about mercury from his documentary.  I already knew a little bit because of my brother’s vaccine injury and because we learned about mercury in school. 

Eric Gladen Fiona Jameson
Filmmaker Eric Gladen with Ronan’s big sister, Fiona.



 

In school, the textbooks said that mercury was beneficial.  I don’t believe that it is.  Mercury can affect the brain and someone’s health.  Eric explains that.  He also talks about the government, the pharmaceutical companies, and how the American people need to be more aware of how mercury is allowed to be used even though it can cause problems. 

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Planning a Family Vacation with a Child on the Autism Spectrum

SummertimeBy Cathy Jameson

As we make plans for a family getaway this summer, I realized that I never shared what we did on our family vacation from last year.  After months of planning, we took the kids with a two-week vacation to the Pacific Northwest. 

Since I love surprises, we didn’t tell the kids where we were going until we were on the plane.  They guessed and guessed and guessed all sorts of fun places we might go.  Little Buddy guessed correctly that we were going to Washington state.  It wasn’t an easy trip to plan, but it was one of the neatest ones we have been able to go on as a family.  From one coast to the other, with all seven of us traveling, our trip was quite the adventure. 

CJ 1 7 18
 

TGIF: Toes Go In First…even if the water was only 55 degrees!

Plan, Plan, and Then Plan Some More

On any given day when Ronan and I leave the house, I plan ahead.  I think about how long we’ll be out of the house and pack what I think we may need.  That includes diapers, wipes, snacks, and a change of clothes, seizure meds, and emergency seizure meds.  It isn’t much to carry around, but those essentials must come with us. 

I knew that we’d need to bring a lot more than those few items on a cross-country trip.  Planning for the trip and for the length of time we’d be gone took months.  I had to think about so many things.

The travel aspect – Ronan hasn’t been on an airplane since 2007.  A million questions went through my mind as I thought about our trip.  Would he board the flight willingly?  Would he stay calm on the flight?  Would the flight crew understand autism?  What if we run into delays – what can we do/bring to help Ronan handle that?  What if we had a medical emergency en route?  How would we manage that?  Not being able to do a practice run at an airport in our area, I knew that we’d be winging it and that we’d have to plan for every possible scenario and hope for the best. 

Transporting the comforts of home – Besides clothes and diapering items, we had to make sure we had enough of Ronan’s medications to last the two weeks.  I also made sure that we had enough for a few extra days in case we had any delays on our trip home. 

Other comforts of home that I needed to have on hand were Ronan’s safe foods.  I mailed a package of some of those items to the family we were staying with about two weeks before we traveled.  That lightened some of the load we’d be carrying in our suitcases and gave us a day’s worth of non-perishable must haves once we arrived.  Since most of us in the family are gluten-free, I had quite the stash of gf goodies for the plane trip west! 

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In His Own World: Autism, Wandering, Worry

WorryBy Cathy Jameson

Breakthroughs.  We ache for them.  We pray for them.  When we witness them, we leap for joy. 

Breakthroughs come when we least expect them, but we welcome them each and every time they happen.  They can lead to reaching a milestone or securing a skill that will lead to more independence.  The thought of more independence floods me with feelings of peace and of hope.  But as quickly as one skill is reached or as soon as one behavior has evened out, we see an old skill wane and an old behavior re-emerge.  Some people have likened that to a seesaw:  one skill goes up, and the consistency of another comes down. 

That’s exactly what happened last week.  Ronan consistently identified and said /m/ every time we (and he) pointed to a letter m.  M for Mulberry Street.  M in the middle of the word Pompeii, several Ms found and said in a storybook about Pocahontas.  Each time he was prompted, and even when he wasn’t, you’d have thought we won the lottery with how we celebrated hearing Ronan say the M sound.

Mid-celebrating, though, our cheers were silenced.  While catching up on making appropriate sounds, Ronan had been eyeing the door.  I’d noticed that he’d been eyeing the door a little bit more than usual.  Maybe he wanted to try out some other skills.  Maybe his confidence was up.  Maybe he thought he’d check out what was going on outside for a bit.  And why not?  The grass is always greener…

The door Ronan was eyeing leads to the garage, to the driveway, to our street, to our little spot in the neighborhood, and to the rest of the world.  With each pass of the door, and now, with each attempt to open the door, Ronan must have thought this rest of the world would soon be his.  Ronan’s not ready for the world though.  So, after the third time catching Ronan trying to open the door by himself, I reminded Ronan’s siblings to remember to lock it each time they came back inside from playing. 

Warnings worked to keep the door locked.  But Ronan was working just as hard as the kids were to figure out how to get the door opened again.  The day that Ronan was successful in opening the door, and when I discovered that he’d walked through it, was the day that my world shattered. 

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A Conversation About SB277: It’s Not About the Vaccines

Goodbye CABy Cathy Jameson

“So, California?  What do you think about what just happened there?” a friend asked me midweek last week. 

“California?  With SB277?  Oh, we’re screwed,” I replied matter-of-factly. 

Not expecting that response, my friend’s eyes widened.  I continued, “If you think that what happened in California doesn’t affect you, oh, boy.  I hate to be the one to tell you that your freedom just got trampled on.” 

I waited for her reply.  

“Now I know your stance on vaccines, Cathy, but I have to say that all the unvaccinated kids they’ve been letting into school are a danger…” she started. 

Now I was the one who was stunned.

She continued, “…and that law would protect my child.  Yes, he’s vaccinated, but he’s sick all the time.  Those unvaccinated kids bring disease and…”

“Wait.  Your son is vaccinated.  But he’s sick all the time?”  I paused then added, “Maybe it’s not the other kids getting him sick.  Have you thought that maybe it’s the vaccines making him sick?”

Not giving her too much time to let that sink in, I said, “You know that vaccines come with risks and that they don’t guarantee immunity, right?  You know that they also may add a burden to his immune system.  Instead of boost it, it’s having to work harder.  Maybe his immune system isn’t working so well because of the vaccines.”

My friend looked at me and then at Ronan and said, “But the immunocompromised kids need the other kids to be vaccinated to prot—…”

“Ronan’s immunocompromised because of the vaccines,” I stated.  “That argument doesn’t work.  And I would never tell another parent to vaccinate their child to protect my child.” 

Before she could say anything, I said, “By agreeing that this law is a good thing for your child because you think it will somehow protect your child, you forget that for other children, like mine, it will only add risk.  I’ve studied those risks.  I understand those risks now but only after watching my child’s health decline.  I can’t ignore those risks, and I will not let what happened to Ronan happen to any of my other children.  To say that you’re hoping that your kid will stop being sick when other kids are vaccinated and to completely ignore those risks, well, you can’t ask me to set my child on fire hoping that it will protect your child.”

“But if vaccines help the greater good…” she began.  I couldn’t let her finish.

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Holding Onto Hope

Hope-1By Cathy Jameson

The month of June can be a challenge.  A strict school routine ends.  A new routine begins.  Overall, my family enjoys this month.  We celebrate two birthdays and an anniversary.  This year though, as June approached, I didn’t feel like celebrating.  I felt a little bit sad instead.

Towards the end of May, friends had started posting stories and pictures of their children’s end-of-the-year school events on Facebook.  I had hoped to go to my children’s school events, but Ronan was struggling with transitions.  Going to therapy was difficult.  Leaving therapy was worse.  Ronan’s meltdowns and frustration levels increased while my motivation decreased.  Knowing that Ronan wouldn’t be able to handle the extra noise and excitement we’d find in his siblings’ classrooms, he and I stated home.  Staying home wasn’t my first choice, but it was the right choice. 

On the days we stayed home, I’d steal glimpses of my Facebook feed.  I saw my friends’ children’s celebrations.  They were filled with happiness and gratitude and included milestones and memories.  Friends’ children, some whom are typical as well as some who had special needs, were winning awards and being promoted.  Some were graduating, too.  Those graduation ceremonies hit me hard.  Ronan just started middle school so we’re a few years away from graduation.  But I panicked.  8th grade will be here before I know it.  So will 8th grade graduation.  Then high school.  Then high school graduation.  Then…

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