Note: Cathy has today off. Did you notice how few stories there were about autism last month?  Cathy did, last year. We've dropped off the radar in the public eye, yesterday's darling.

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By Cathy Jameson

Around this time last year, I noticed that autism had all but dropped off the news cycle.  It appears to have taken a back seat again this year.  No big fan of how the month of April has been blue-washed for well over a decade, I’m okay with fewer autism awareness campaigns. 

Always a strong proponent for autism action, I’m not even seeing that in this month’s news stories.  Like the flu, and like the measles, COVID19 has replaced illnesses, diseases, and other health conditions the world over. 

Autism awareness may have disappeared from the media, but the autism epidemic still exists.  Some will argue that autism, a spectrum disorder, is not an epidemic.  While it’s not a disease or illness, autism, a condition that can significantly impact physical and mental health, does fit the CDC’s definition of epidemic. From their website: CDC.gov

epidemic the occurrence of more cases of disease, injury, or other health condition than expected in a given area or among a specific group of persons during a particular period. Usually, the cases are presumed to have a common cause or to be related to one another in some way

Last updated in 2020, the current rate, which has risen steadily for decades, is 1 in 54 reported cases.  Even though the numbers are not a true representation, if that trend continues more will be added at the next reporting period.  Based on data from years ago, and from only a handful children in only a handful of states, a more accurate rate is likely much higher.  With that, I’d say that one can absolutely use the word epidemic to describe what’s happening!  

Regardless of how high the statistics are, autism news is scant these days. 

When I looked for an autism-specific news story last Tuesday, a few half-hearted reports of groups “lighting it up blue” could be found.  But they certainly didn’t come with the pomp and circumstance previous April autism stories have had.  I did notice, however, that some are pushing for autism acceptance this year, not awareness. Acceptance?  I’d rather not.

Note: Unlike bread, our incredible library of posts rarely get stale.  Cathy is taking a weekend holiday, so we present a post from December 2018.  Enjoy.

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By Cathy Jameson

Did I tell you?  He’s sleeping through the night. 

Oh, that’s great! 

He wakes up dry, too.

Even better! 

How are his mornings?  Do you get much done?

Well, after I prepare his foods and feed him, he gets just a little break.  Feedings can be tricky because he’s gotten picky about some foods.  After breakfast is over, it’s time for therapy.

Ahh, yes.  Feedings.  I remember those days.  I’m sure he’ll come around. 

How many hours of therapy does he need?

Actually, if he can tolerate it and won’t need to rest midday, we’re going to increase therapy hours after the new year.

That’s wonderful!  What are his latest milestones? Anything finally clicking?

He’s learning to communicate his wants better, and almost staying with an activity through to completion.  He’s showing more signs that bathroom skills may be the next big thing…

Like sitting on the toilet??

Wouldn’t that be a dream come true! 

It would.  Do you think he has the motor skills for it?

I do, but the big question is does he have the sensation for it.  You know, when he’s doing something he wants to do and is really engrossed in the activity, it’s like he can’t even tell he’s soiled his diaper. 

I’ve heard that before.  What else?  Any other self-help skills he’s close to mastering?

He’s getting there…clearing his bowl and plate from the table, tucking in the dining room chair he just sat in, helping make his bed, putting dirty laundry in the laundry room…some basic, typical skills.

By Cathy Jameson

I was going through some really old files that I haven't seen in a really long time and found something that I’d written that, wow, brought me way back.  At the time, it still felt like I was in the early stages of understanding what sort of options we had for Ronan's education and for his medical needs.  Back then, after reading an article, a website, or a book that I found useful, I’d share what I was learning with others.  I’m still sharing and offering help to others today.  That’s because every day is a good day to learn.  Every day will also always be a good day to help someone else.  So, here’s that really old file, with some new edits, for today’s post. 

--

Lifeline

There's a saying that goes something like this, When you know one person with autism, you know one person with autism.  I’m always hoping someone will add “…and…” with more information at the end of that sentence!  

The more I think of that sentence, the more questions I want to ask:

What does that mean?
Why won't you complete that sentence for me?

Where can I go to get help?

Whom should I trust?

How long is this going to last?

Over the years of trying to find the right path to walk with my son’s particular issues, I’ve read many publications and webpages.  I’ve read about topics such as autism, autoimmune disease, mitochondrial dysfunction, vaccine injury, communication disorders, educational therapies and biomedical interventions.  When I would come across those topics, I always looked for the most current scientific news about them.  I compared that news with past trends and then took time to read blogs so as to get a parents’ perspective on things.  Parent perspective, I discovered, is always important to consider.

I haven’t found all the answers to help me understand everything that affected my son, Ronan, but I have gathered an incredible stack of books for my personal library.  I have tons of saved webpages in my files on my computer, and have also collected several business cards of professionals whom I can call or email when I need their assistance.

With all the reading and asking that I have done to help me understand my child’s needs better, I made it a point to share that information with local families.  It isn’t always easy talking about certain things, but with them I can openly share my thoughts, my worries and my findings without judgment.  I wouldn’t be as brave as I am in speaking up now if not for the parents who walked before me though.  These parents may not realize how much they have helped a mom like me, but they’ve taught me where to research and whom to trust.  They also gave me a sneak peek into what to expect and gave tips on how to manage all of the above.  Those parents have become my lifeline.  Without their guidance, I would be lost.  So I’ve made it a point over the years to pay it forward with telling our story.  I do that with the hope that others can be aware of autism warning flags, of potential treatment options, and of finding helpful support groups and useful resources.

By Cathy Jameson

I wanted to catch up on the world news
while eating breakfast one morning late last week.  Bouncing from one news site to another, I never know what types of stories I’ll find.  I hadn’t seen too much autism-specific news this past month, so I did something I don’t love to do.  I typed in the word autism in the search bar. 

Scrolling past the top search hits – because they read more like sponsored ads than actual news stories, I was pleasantly surprised by a few headlines.  I’m usually hesitant to click on a story if I don’t recognize the news outlet because more often than not, mainstream news doesn’t feature our community as kindly as others.  The story that drew me in didn’t do that.  The more I read, the more I could actually relate to the parent perspective story! It wasn’t the first time that had happened, but it was encouraging to read through another family’s familiar reality. 

After describing encounters while he and his son are out in public, the young father shared this advice: 

Just be nice. 

It’s such simple advice!  In fact, it’s the only bit of advice I’d like to also share here today. 

Today is May 1^st.  2022’s autism awareness month, and that newer, unusual campaign, autism acceptance, ended yesterday.  While autism may not have as major of a spotlight in May’s news cycles, it’s still around.  Our kids don’t lose their diagnosis nor the great need for support just because the month of April ended.  What a different world it would be if their stims, seizures and overloaded sensory systems could give them bit of a break when April 30^th rolled around. 

We, the weary parents, don’t get to stop advocating or stop looking for resources when we flip to a new calendar page either. 

We keep on going. 

We keep on working. 

We continue to help others in similar situations, too. 

It’s business as usual in our households.  That’s because for many in our community, our kids have a more severe type of autism than what typically gets featured in news stories.  Our kids require care 24/7.  With that kind of care, comes great responsibility.  Some parents have had to have louder voices to get appropriate assistance.  They’ve had to fight hard to maintain educational and medical rights, too.  Every family has their own unique struggles, but the families in our community will sometimes go through tougher situations, ones that won’t make it to upbeat news stories or on television series.  Thankfully, some people outside of our community recognize that.

By Cathy Jameson

I’ve usually had the chance to create a long list of inspirational songs by the time the month of April rolls around.  Whichever tune has put a pep in my step, or whichever artists remind me to fight the good fight, I jot that info down in a little notebook I keep in my car.  Over the year, thought-provoking songs and artists’ names fill a few pages.  To prepare this post, which is more of a covid-playlist than an autism action month playlist, I tried to recall from memory some of the songs.  I couldn’t partly because I’d bought a new-to-me vehicle late last year and never put that notebook in the new car. 

Something else happened, too. 

Midway through the winter, I stopped listening to music.  Even at home.  I craved complete silence instead of my usual musical motivation.  With all the crazy changes, and with how quickly life got flipped upside down, I was feeling kinda numb.

https://www.youtube.com/watch?v=kXYiU_JCYtU

We’ve witnessed the absolute strangest things these last two years. 

So.

Many.

Bizarre.

Things.

Those things have changed people.  And not always for the better. 

https://www.youtube.com/watch?v=JfxdX0I9PTc

It was too much for a lot of people.  The news and all the doom and gloom it brought were getting to be too much for me, so I extended that quiet time through Lent making it a point to not listen to anything, even talk radio, while I was driving.  

Once Lent was over, I started to crave music again.  But nothing too crazy or too loud. 

There’d be time for dancing in my kitchen again, but not just yet. 

https://www.youtube.com/watch?v=jhat-xUQ6dw

Too many people were going through tough times for too long.  Feeling lost, broken and under so much pressure, my heart ached hearing how tough life was for others.  It was time for me to get that beat going again.  It's only been a few days since turning that music back on again, but every song that flowed out of my speakers echoed something I’d heard about or experienced.   

By Cathy Jameson

...the people who sit in darkness 

have seen a great light,

on those dwelling in a land overshadowed by death

light has arisen...   Matthew 4:16

Darkness.  The last two years have been covered by darkness.  Thoughts, words and deeds, as well as other parts of life as we knew it, were taken over by covid.  In some places in the world, its grip is still pretty tight.  Travel restrictions haven't been completely lifted.  Mask mandates are still being enforced.  Despite the risks, that liability-free covid vaccine is still being required for some.  Those running the covid show are not ready to walk away from what they started.  Nor are they willing to give an inch to the rest of us.  How can we find our way out of the darkness?

By not giving up - even though it feels like every odd is against you.

By keeping one foot in front of the other - even though you've tripped so many times already.

By finding one, just one, tiny positive thing to think about - even though negatives may be all about you.

I keep thinking that at some point, things have to settle back down.  With all the changes the public was forced to make, including the most bizarre ones that have happened, I don't know when that'll happen.  But this time of sacrificing that we've experienced has to end.  Some people aren't waiting for an official end to be declared and have successfully taken a stand.  They've stopped sacrificing their children's mental health, their own jobs, and their family's livelihoods in 'the name of Science'.  They've taken back their rights and are living life as normally as before.  I saw that building up at the beginning of 2022.  I saw that happen through the recent Lenten season also.  

The time of Lent is a season of repentance and reflection of Jesus’ suffering.  It's a purposeful season that builds up to new life and new beginnings.  As this season ends, we celebrate something.  We get to celebrate in hope again!  Covid didn't bring that.  It didn't bring much hope at all when it was ushered in.  What we got was a dangerous agenda that brought death and destruction.  No wonder its grip is so tight.  No wonder so many have said, "Jesus, come quickly!" when they think about how changed life is now compared to what it was just a few short years ago. 

By Cathy Jameson

I may not always feel strong enough for a lot of what I’ve had to handle, but God’s timing on my journey here is absolutely perfect.  In a moment, especially a frustrating moment, I sometimes may not realize that perfect timing right away.  But blessings have a way of finding us.  They did years ago when I found this community.  They do even now.  I never take any of the gifts my family has received, be they spiritual or otherwise, for granted.  I found that to be true again when an unexpected blessing came my way last week.  An unexpected phone call.  That unexpected blessing.  Followed by an unexpected wave of emotions.  It was something to be thankful for once more. 

If I had to describe it, it wasn’t just a blessing.  It was also autism action in action. 

I’d planned to write about autism action for this weekend already.  I wanted to reshare a post I’d written back in 2014.  It was inspired by people who’d helped us because they’d heard that the autism we lived wasn’t like what was being portrayed in cheery news stories.  The news stories showcased only positive outcomes; they rarely – if ever, shed light on the kids who wouldn’t grow into independent adults.  People who knew us knew that my son’s diagnosis paled in comparison to those featured, and they wanted to do something to help me help him.  They wanted to help me help my other kids as well.  The assistance wasn’t just physical assistance, like shuttling my typical children to their typical activities; it was also spiritual and emotional assistance being offered to me and my entire family. 

It’s a very humbling experience to be on the receiving end of that kind of support. 

This year, I’m finding that I need more support than previous years.  For so long, I’d been able to be the helper for others.  As the helpee I have been quick to say yes when someone asks, Hey, Cathy, do you need anything right now?  “Ohmygosh, YES!  I do,” I’ll say.  Friends and those who personally know our story have been so very generous with us, and I don’t mean financially, although those gifts have always been a Godsend.  Other gifts are ones that have promoted autism action, like when people checked in to see if Ronan is okay after they’ve heard he’s had a rough day.  They check to make sure I am okay, too.  They’ve asked if I’m sleeping well, if I need a meal delivered, or if they can drop off some groceries to us.  Some still ask if they can pick up my typical kids from their typical activities while I tend to Ronan.  He isn’t as busy as he was when he was in all sorts of therapy, but his health is still a concern.

It can be unpredictable, too.

By Cathy Jameson

I had forgotten about this image that I found in my writing files last week.  Made by a good friend several years ago, I hadn't seen it in a long time. I hadn't read the piece that inspired my friend to make the image in a long time either.  I'm glad to share it here.  I had a few ideas about what to write as we began another month of April, but nothing sounded exactly right for today.  That image, as simple as it is, said it all. 

Hope Now. 

Help Now.

Act Now.

If you've been reading my writing for any length of time, you'll recognize that hoping, helping, and acting are running themes of many of my stories about our personal experiences.  Some days I veer from that norm.  Even when I share what happened on a really rough day, though, or when I recall a cry-my-eyes-out memory, I try to add an element of hope.

Why?

Because...

Without hope, there can be despair.

Without help, there can be difficulties.

Without action, there can be apathy.

By Cathy Jameson

“Mrs. Jameson,” a young girl said to me when I approached where she was playing, “When I do this (presses her shoulder), it hurts,” she shared.

“Well, don’t do that, silly goose,” I replied. 

A few minutes later, a sinking feeling fell over me.  It wasn’t just that her shoulder hurt; it was where she pressed on her shoulder that made me sigh a deep, heavy sigh.  I didn’t know this little one too well, so I didn’t ask her why it hurt when she first mentioned it.  I did have that opportunity later, though, to get the rest of the story.

“Oh, it’s because I got my flu shot yesterday,” she said.

Flu shot?  Now?  Why??  I wanted to ask.  Since it’s none of my business, and because she was such a young child, I kept those questions to myself.  I know the flu virus doesn’t care what time of year it is, but I thought it was rather late in the “flu season” to get the shot.  What changed?  She was not the only young person I’d recently learned had gotten it, so I tried to recall what I’d heard recently in flu shot news.

I gave up listening to the radio for Lent, so I’ve missed quite a bit of on-air news these last few weeks.  I’m in the car a lot, which always provides ample opportunities for me to tune into all sorts of news and music channels.  I remembered that right before I turned off the radio for 40 days, I started to hear chatter about the flu shot.  “It’s not too late to talk to your doctor about getting the flu vaccine,” one of the talk radio hosts had pushed.  I tend to turn the channel when the talking heads start talking about that stuff, so maybe I missed the latest flu shot roll out.  Maybe I missed that the pharmaceutical companies were throwing ad dollars to the media hoping to play catch up with lost flu shot revenue.  After all, covid had taken center stage and pushed the flu right off its pedestal.  The flu all but disappeared last year.  With the massive drop in cases being reported last year, maybe the need to promote flu shots also disappeared. 

NEW YORK (AP) — February is usually the peak of flu season, with doctors’ offices and hospitals packed with suffering patients. But not this year.  Flu has virtually disappeared from the U.S., with reports coming in at far lower levels than anything seen in decades.

Gone.  Completely.  Just like that!  Too bad it didn’t last.  It was nice to get a break from the constant advertising that happens each flu shot season.   I didn’t miss those one-sided ads at all, but I did miss the reporting of how effective the powers that be claimed those shots were earlier this year.  They’d be pretty effective!  You’d be like a superhero if you got one, too.   

As if orchestrated, the flu - and that money-making flu shot, came right back this year.  Apparently, TV personalities and TV doctors joined in to do pharma’s bidding early on. It didn’t happen in this segment, but that TV doctor encouraged getting a covid and a flu shot at the same time.  I’m not sure why he’d promote that when unbiased, long-term studies on combining those two liability-free products haven’t even had a chance to be done yet.  I guess that’s part of the tactic of cheerily rolling out the vaccines hoping the public will roll up those sleeves of theirs.  That aligns with the CDC’s claim that they work “…each year to increase the number of people who receive a flu vaccine and eliminate barriers to vaccination.”  Like previous years, though, the vaccine effectiveness (VE) is questionable. 

By Cathy Jameson

Waving her off, I faked a smile and then quickly turned my head.  Capturing the curiosity of a stranger, my heart sank.  I'd just encouraged my typical children to go ahead of us into the chapel.  Wishing I'd asked one of them to stay with me, Ronan and I were now in a standoff in a parking lot.  It's not the first time he'd been there.  But he was making every indication that he did not want to go again. 

I whispered to Ronan, “Dude, it's just a few more steps.  You can do it, I know you can.”   

Turning my head back toward the lady who'd come to a complete stop in her car behind us, I politely waved her off.  She was still trying to decide if I needed help or not, so I faked another big smile hoping she’d take it that we were okay.  At the same time, Ronan took one tiny, willing step forward.  Seeing him take that step must have reassured her because she zoomed away.  I wish Ronan would've zoomed into the church where his younger sisters were waiting for us.  But that one step was all he ended up taking. 

Frustrated, I said, “Can you please go?”

Before Ronan could make any sort of response, good or otherwise, an usher left the narthex and walked toward us.  Both doors that lead into the back of the church were wide open.  He had a front row seat to the struggle I was praying would end.  “Hey, can I help with anything?” he very politely asked.  Normally, my other son helps walk Ronan in, but he'd gone to an earlier Mass.  They effortlessly walk in together.  They always make it to the pew.  If Ronan shows any sort of hesitation, it’s brief because Willem turns up the encouragement which always results in a happy ending. 

I was not the fun sibling though.

In that parking lot, I was the mean ol' mom who only made demands, demands that Ronan had no interest in.  If that wasn’t bad enough, I now had a growing audience.  I sheepishly smiled at the usher and said, “Well, he doesn't seem to want to go to church today."  Nodding, he asked, "What can I do?"  As much as I wanted to do this alone, I said, “This is Ronan, and if you could take his hand, maybe we can walk him in together."  Without hesitation, the usher did exactly that.  We were just a few steps from the doorway when the woman who'd seen us in the parking lot came walking quickly toward us.   

"Is he okay?  Are you okay??"  

I was startled by her questions.  I was okay, and my kid was just being stubborn, I wanted to share.  I didn't say that, of course.  The last thing I wanted to do was make it sound like Ronan was being obstinate.  If he was typically developing, I would call his refusal to go in the building an obstinate behavior.  But the developmental delays, the communication struggles, and the sensory overload is not obstinate at all. 

It’s part of what he has to handle. 

By Cathy Jameson

We live in a neighborhood with several young active duty military families.  Some of the guys will exercise and run through the streets with their military gear on – either wearing their boots, or carrying a rucksack, or while wearing their bullet-proof vest.  We saw a young man running with his vest on just last week.  I could’ve yelled out a Marine Corps brat OORAH to him, but I said a little prayer for him instead. 

That guy may just be some guy who likes to push himself, but he may also be gearing up to go overseas.  Wearing the vest, which weighs about 20-25 pounds, while running may help him get ready for the physical rigors he could soon encounter.  If he is deploying and if he knows where he’s headed, bravo to him for prepping now.  He’ll know what to pack and what to expect wherever he lands.  After seeing him, and after watching a re-released documentary last week, I’ve been thinking about how ready – and how not physically ready – I’d be if I’d unexpectedly have to carry some extra weight.

The documentary I just watched is called The Last Days, a film about Hungarian Jews who lived during the Final Solution.  Always fascinated by other people’s survival stories, I am so grateful to learn about their past.  I’m even more fascinated that some people, who’ve lived through frightening times, are still alive today and continue to talk about what they witnessed.  The stories presented in The Last Days had me listening more intently than other documentaries I’ve watched about the war.  One of the women shared that they knew trouble would soon be crossing into their homeland.  When the troops did make it to her town, she was permitted to grab 25 kilos of personal belongings.

They were told they could take…all your valuables…this after being turned in by neighbors.

They were permitted…25 kilos…and had just 30 minutes to pack up.

What do you take? 

What is 25 kilos? 

How much is 25 kilos…do you take your plates…dishes…your pillows?

God forbid we ever have to gather our belongings and leave as quickly, and for as long, as these young Jewish families had to.  I’ve never thought about having to do that today, but if we ever did, I know what I’d need to bring with us.  While I could get by with the bare minimum, Ronan could not.  We’d have to bring more than 25 kilos, or 55 pounds, of his items: 

The first thing I’d grab is small every-day bag.  That weighs 3.5 pounds.

By Cathy Jameson

Let me preface today’s post saying that I am absolutely thrilled that Covid has seemingly been whisked away.  Pick the positive adjective - thrilled…ecstatic…grateful…relieved - and that’s me.  Really!  So why am I hunting and pecking for any and every bit of news about the disappearance of Covid, mask and vaccine mandates?  Why am I questioning the statistics that were a constant for two years?  Why do I care that restrictions are no longer? 

Something doesn’t add up. 

And I want to know why. 

I guess it comes down to being curious. 

The Curious Cat, that’s me.  I’m especially curious when those in charge of the official Covid narrative, who shoved their Covid authority down our throats for two very long, arduous, emotionally/psychologically/physically draining years, have turned an about face.  Conspiracy theorists – and conspiracy realists – have their own ideas about why that’s happened. 

So I went searching for some information. 

Our country’s Covid case numbers are still considered high,  according to the officials. 

Despite that, schools, government agencies, and local businesses rather quickly changed their tune and lifted restrictions. Could it be because the parents said no more?  Could it be because the Canadian truckers took a stand?  Could it be because those midterms are looming?  Could it be related to the timing of the crisis overseas?  Maybe it’s because they’ve changed metrics yet again.  I haven’t found a solid reason yet, but all of those, including the people orchestrating some of those events, are worth looking into.

By Cathy Jameson

I have a handwritten note in a folder that goes with me to every doctor’s appointment I make for my son.  The paper isn’t that old.  Well, in terms of today’s technological advances, it may be - it’s from a dot-matrix printer we used to own in the late 1990s.  On it are the milestones my son was making.  Those weren’t just memories I wanted to preserve; they were my guide to knowing that my son was, for a time, on time with his development. 

Looking at the paper now, it’s clear that Ronan was not hitting some childhood milestones.  I knew that when I was jotting those notes down, not just because of later visits with the pediatrician, but because of my college studies.  I majored in Human Development and Family Studies.  My focus was child development, specifically early child development from birth to nursery school.  I used that information about milestones for research papers as I entered my 20s.  I cited it frequently after college and later into my 30s. 

My teaching career had me engaged with children of all ages and with typical abilities.  The very few students I encountered with special needs in the classroom tugged at my heart.  While I couldn’t compare my life with them, nor their parents, I had basic knowledge of what support they needed to be successful students.  Both in and out of college, I will be forever grateful for the information I learned and for the experiences I had.  That helped me to know that I needed to leap to action as a young mother sooner rather than later. 

The nagging feelings I started having about my own child’s growth and development proved helpful.  Of course, the nagging part wasn’t so pleasant, but knowing that something wasn’t right gave me a reason to talk with our doctor.  I rarely had to make an appointment for my first child, beyond the scheduled well-child visits, but I knew the option existed.  When Ronan didn’t hit a major milestone, walking, I’d planned to make a call about his development by the end of that week.  Luckily, I didn’t need to make that cold call.  I ran into our doctor at the grocery store before my self-imposed deadline. 

We lived in a small, rural town at the time and would see familiar faces wherever we went.  One evening, while waiting in line to pay for my groceries, I looked up and saw the pediatrician.  She had gotten in line behind us and said hello.  Not wanting to take advantage of her personal time, I told her she was on my list of people to call that week.  She quizzically said, “Oh?  Is everything okay?”  Fully taking advantage of her piqued interest, I continued, “Well, I think something’s wrong.  Ronan’s still not walking.”  Ronan had crawled on time and began to pull up on furniture on time, but he was still not able to stand completely on his own.  I knew about late walkers, my daughter was a tad late to walk, but he was almost 16 months old.  To me, that was concerning.  Ronan was getting a little old for not being able to walk according to the major milestone list I’d studied years ago in school.

This is a Best of post from April, 2017. Cathy is enjoying a day off.

By  Cathy Jameson

I know I’ve mentioned it here before, but I am really proud of my kids.  They are not perfect.  Hardly.  But they are a lot of fun and pretty creative, too.  I love to see their creations and am in awe of how quickly and easily it is for them to think-outside-the-box when they play.  I encourage them always to think outside the box, not just when they play or when they’re trying to solve an academic problem, but for life in general.

I’m not sure what inspired them to play a game they call Bind and Go Seek, but it is absolutely one of the best games my children love to play.  It’s easy to play and could fill a whole morning or afternoon.  What are the rules?  Have fun, and be careful.  How do you play?  Imagine 3 of Ronan’s siblings giggling with glee as they tiptoe, scamper, and chase each other through the house.  Then, imagine the other sibling trying to keep up with the others while blindfolded.  So far, knock on wood, no one has been injured during a game.  They’ve grown closer to each other, albeit not permanently, but each game evokes stronger sibling ties as well as hours’ worth of laughter. 

One night, while watching the blindfolded sibling search for the others, I couldn’t help but think how helpless that child was.  Blind.  Unable to use clues in their environment they normally rely on, they had to rely on instinct and their senses.  Oddly, they didn’t think they were helpless at all.  Rather, for that night’s seeker, it was the opposite!  It was thrilling, exhilarating, and exciting.  With no light, with no sense of direction, and with nothing but her instincts as her guide, she confidently prepared to search for the others.

First, the countdown. 

Then, the bellowing of a friendly warning, “Ready or not, here I come!” 

Thinking about how many obstacles stood between her and her siblings, I cringed.  That didn’t stop that brave, little lady.  Gleefully with arms outstretched, and with a pep in her step, she set out to tag one of her sisters or her brother.

The game was afoot. 

By Cathy Jameson

For some time, Ronan’s younger brother has surpassed him in every phase of growth and development.  Long ago, there was a time when my sons were neck-in-neck both physically and cognitively.  Those years were wonderful years.  Then, the boys shared the same clothing, had similar tastes in food, shared playtime activities and also enjoyed the same television shows.  That’s not the way how life is now and hasn’t been for many years. 

As my boys aged, the gap in their growth and development widened. 

Cognitively, Ronan’s stuck in a much younger phase.  Physically, he’s a good 10 inches shorter than his brother Willem.  While not as tall as Willem, his sisters tower, or will soon tower, over Ronan.  Each of them has responded in their own unique way to the differences in growth and also to the very different life experiences they have had because of their brother.   Most of the experiences have been positive, for which we are all grateful.  Some, like for any family – typical or one that has a special needs family member, can also be tough experiences.  While I mostly paint a pretty picture of us, and especially of the siblings, I readily admit that not every day has been an easy one.  If asked, my children would admit that, too. 

Life is hard.

Moments are frustrating.

And Ronan really can be a rotten pickle (an affection family term for someone who can annoy the heck out of a growing impatient sibling who’s trying very hard to not lose their patience)!

Sibling rivalry doesn’t go away when autism enters the family; it just takes on a different form.  For Ronan to knowingly push our buttons because he can, takes quite the skill.  I don’t condone it, but secretly I love it.  Where he can’t verbalize typical sibling antics, he sure can do little things that get them a little peeved.  When I see that, I’m quick to correct it even though I am curious about what Ronan will think of to do next.  People should be polite to others, including Ronan, and not annoy someone just because they’re capable of doing so.

By Cathy Jameson

I’ve stayed active watching vaccine bills locally and across the country for many years now, voicing my concerns when I can.  I’m borrowing my own words that I shared 2 years ago:

I never used to pay attention to politics when I was younger.  I knew the basics and recognized who sat in the top government positions, but that was about it.  Now, I read and watch everything I can about it.  From what’s happening on the state level all the way through to the federal level, I scour the news looking at what my and other representatives across the country are talking about.  When vaccines are on the docket, I pay even more attention.  What happens in one state, could very well happen in another.  (From All Hands on Deck for Vaccine Bills Across the USA, 1 March 2020)

That post came to mind when I got an alert about some bills that were soon-to-be heard in my state.  With state legislative in session now, I’ll continue to look at what’s on the docket. 

Legislative sessions for 2022 have already begun in many states:

Curious about your state’s calendar?  This pdf lists specific dates of regular sessions and also special sessions.  Curious about what your state recorded last session?  StateScan Roundup  recaps some of who did what and when.  Want to get a leg up on certain bills?  This group offers alerts specific to whatever causes you wish to track.  Want to see what’s being watched by the National Vaccine Information Center (NVIC) Advocacy Team, a group that keeps an eye on all state bills related to vaccines?  Click this link to find the latest information and action alerts.  (Log in is free but required to access more detailed information on their portal.)  Want to know who represents you?  Click your home state’s abbreviation on this map (or type the state name in the box below that map) to see who’s sitting in office now. 

I used to feel so intimidated by those working in legislation.  Heck, I was even intimidated by the legislative process itself!  Schoolhouse Rock made it look so easy, but I shied away from it as much as possible.    

https://www.youtube.com/watch?v=tyeJ55o3El0

Writing bills, lobbying, voting, enacting – those were things other people did, not me.  Maybe years ago it was easier.  But shady doings protecting liability-free medical products have become a big part of politics.  How could I, a simple housewife and mother, have any sort of power to make any sort of change?  Could my efforts really help?  Maybe.  I really wouldn’t know unless I tried to make a difference.

by Cathy Jameson

I don’t know much about marketing, but I do know that fancy words in ads can help make a bigger sale.  I thought about that when I saw a phrase I didn’t recognize: The Going Out Edit.  I knew it had something to do with fashion, maybe even high fashion.  But that was it.  Whatever it was included a dollar sign. 

Sometimes the new teen/young adult lingo goes right over my head.  In case one of my kids began to use the phrase, I wanted to check it out and see what it meant.  Sure enough, it's the things you wear, the accessories you bring, or the stuff you add on to your outfit.  From Cotton:On

The Going Out Edit

A calendar full of social plans, parties and reasons to dress up again. Think little black dresses, tops, cute crops and pants that pair perfectly with your heels. Jeans? Absolutely. Whether you’re going out with the girls, hitting the dancefloor or after-work drinks, these new outfits were made to be seen in. Bodycon dress? A statement co-ord set? A halter top and jeans for that classic ‘jeans and a nice top’ look? Real big vibes. Refresh your wardrobe, grab your clutch—we’re going out.

I'm not into fashion at all these days.  Actually, I never really have been.  While shopping before my kids were born, if a dress, shirt or pair of pants fit me, and if the price was right, I'd get it.  I still buy clothes that way now, including when I'm at thrift stores (which is my favorite place to shop).  I was looking at an online retail site for a few things when I saw a section that had that The Going Out Edit title.  Before I saw the photo under it, I immediately thought of Ronan.  Could edit mean what we bring along with us when we leave the house? I wondered.  We just call that stuff.  "Get your stuff, kids.  Bring Ronan's, too," is what I yell as we're trying to get out the door on our way out.  

That's exactly what I said when we left the house last Saturday.  

One by one, the kids pig piled into the car.  Dressed up that late afternoon because after a haircut for Ronan's little brother, we'd be heading to Mass.  The girls were in dresses and wore nice necklaces.  Their purses “completed” the outfit.  Their brothers were in their khaki pants and had nice shirts on.  I was wearing one of my "mom" outfits.  As much as I'd love to dress up for church, if Ronan is coming with us, I need to wear pants and flats.  Too many times, when he was much younger, I learned that I needed to wear sensible clothing to places he may not want to stay.  Carrying him, sometimes by piggyback, while wearing a dress can be difficult.  It can also be embarrassing. 

We always hope he'll want to stay wherever we go, but it's easier to 'exit stage left' in clothes that are comfortable. 

By Cathy Jameson

"…I want to get out of the house already.

I want my freedom to live.

I want to go next door and play chess.

I want to go take some pictures."

— Howard Stern

What's stopping one of the loudest voices from the freedom to live?  Who's keeping him from going next door and playing chess?  And why can't he take pictures?  I know things are not as great as they used to be there, but are cameras and photographs banned in New York City now also?   

Those were my first thoughts when I read that quote from Howard Stern.  I don't usually think about him, but I really did stop and think about Stern and what a predicament he must be in to not feel like he has any freedom.  My next thoughts about him and that quote included more questions. 

Covid restrictions are still pretty intense in some localities.  But Stern is a rule breaker kind of guy.  So why is he going along with the most tyrannical of rules?  He's a headline grabbing sort of celebrity.  So why hasn't he used his platform to help get rid of these really restrictive rules?  Why doesn't Stern fight for what he wants — freedom to live — and kick the greedy government and its mandates to the curb?  He's a cross-the-line sort of person.  In fact, he's one of the most famous cross-the-line sorts of persons who ever existed! 

But what you allow is what will continue.

Quarantine and the massive shutdowns that took place in early 2020 did a number on people.  After reading the article that featured Stern’s quote above, I can only imagine they had a negative impact on Stern as well.  The decision to shutter people and to limit daily human contact affected kids, adults, and even pets.  Depression, suicide and addiction rates increased while availability of therapists and medical personnel, trained to address those conditions, decreased.  Over time people raised their concerns about how difficult having to quarantine can be, including other celebrities.  

Many people, both famous and not, want Covid to end so they can get some freedoms back.  Some think freedom, and what they remember as 'normal life' will return after Covid 'runs its course'.  Others insist that a vaccine is the only answer to make the madness stop.  With how readily available they are, Stern brought vaccines up, too.  He had this to say about people who are hesitant about getting experimental vaccines or who are decidedly against them (pardon the language):  

"...people who refuse to get Covid vaccinated are 'imbeciles' who should 'go f*uck yourself." 

By Cathy Jameson

Greeted by the most peaceful wintry scene last Monday morning, our Christmas vacation was now extended at least one more day.  With all five kids home, including my oldest who was home from college, my Mommy heart was happy.  My heart would go through a range of emotions over the next few days...

"We have a 19 year old who needs to be next. I'm sending back Jameson, Ronan Jameson...he's just had a seizure..."

"Mom, we're next," Ronan's younger sister said, as we gathered our belongings.  

Thank God, I thought. 

Ronan had been in and out of sleep.  Tremoring.  Coughing.  Heart racing.  Feverish.  Trying to remain calm in the midst of a storm racking his now weakened body, he couldn’t do much.  At some points, he could barely lift his head.  The only time Ronan was his usual self in those early morning hours was during the exam when he was triaged.  A pro at sitting still when nurses take his temperature, blood pressure, and check his heart rate, I was grateful for his cooperation.  The nasal swab, based on the symptoms he presented with, was another story.  It took three people, me included, to convince Ronan to hold still and stay still for that invasive part of the exam. 

Knowing it could be a bit of a wait to be called back, I didn't expect it to be an hours' long wait.  When the doctor paged the nurses about Ronan, I think we were waiting 4 hours at that point.  Those 4 hours don't include the harrowing 2 hours prior to arriving.  Prior to our arrival, another kind of storm brewed, one that dumped 12" of snow in our area.  We'd already lost power before waking up the day of the storm, and that was with only a few inches of snow on the ground at that point.   

More snow would come.  

So would downed trees and power lines.  

We'd learned about the condition of the roads but it would take seeing them to believe how bad they were.  Ronan's big sister experienced them firsthand. She had reported to work before any of the roads saw a flake of snow at 4am Monday morning.  Normally a 25-minute drive, it took her 5 hours to get home.  Even with 4-wheel drive, it would be a treacherous journey for Fiona.  Snapped trees, thick snow, unplowed streets and icy patches in places that had been cleared peppered her drive back.  When she needed it, people helped her get out of the places her car had gotten stuck.  When it was safe, she helped clear the road of the jagged limbs blocking other people's paths.  Stranger helping stranger, I was comforted knowing others were quickly helping my daughter get home.  Once safely in our neighborhood, she could only get so far though.  

A utility pole on the street just behind ours, split in half, leaned and landed on the sagging power lines of the other side of the road.  Neighbors had been using chainsaws to cut trees blocking several intersections, but they knew not to touch the utility poles.  In a line of cars waiting to get around that area, my daughter sat in her cold, wet work clothes hoping it would only be a few more minutes before she was on our street.  She was so close to us!  But she had to turn around and was rerouted again.  

Forced to leave her car at a park, she walked the last mile home around more downed trees and through people's backyards in a foot of freshly fallen snow.  

While we waited for her safe arrival, my other kids took to the hills in our neighborhood to go sledding.  I love to see them play outside!   So happy, so full of energy, I smile big smiles when they get suited up for that kind of fun.  

As they got ready to play, I got Ronan settled on the couch with his fully-charged iPad so I could begin shoveling the driveway.  Normally something my husband does, it would be up to me to clear it since he was out of town.  I always offer anyway when he's home because it's a good, little workout for me.  Knowing I'd do the bulk of the work myself, I needed to conserve my energy.  The snow was heavy, and there was just so much of it.  This time, I would have to shovel part of the street also.  The one plow that went down our street one time during the early part of the storm managed to pack extra snow along the entire length of our 4WD truck that was parked on the street.  Somehow, it dumped snow in front of it also. 

By Cathy Jameson

It’s not really a New Year’s Resolution.  But if I had to share one bit of advice as we begin 2022, I’d share that we must always be ever vigilant. 

I have shared some of the complications my son has had post-vaccination, including experiencing seizures.  Other complications, ones that could have also been avoided, have crept up over the years.  Those complications were discovered while filling prescriptions or while battling insurance companies. 

2009

Today I’m a medical billing detective.  Looking for needles in the haystack with receipts EOBs, insurance claims and wondering why money doesn't add up in our favor--someone's getting the Wrath of Cath in a phone call tomorrow.  It's always fun to do on a Friday.  Grrr…

I never knew how thorough I had to be when it came to reading medical records, filing insurance claims and filling prescriptions until bad things happened.  Sometimes, I’d be able to thwart an issue before Ronan would be affected by it. 

Other times, I could not. 

2009 – Early June

Ugh.  Ronan is having more strange eye and head activity. I believe he had a seizure right after I put his socks on. Legs flinched really fast and the rest of him was going so slowly.  I called the neuro nurse again.  We need to switch to the brand name drug to see if it is the generic drug causing the activity.  Get this though…we have to do a trial to prove the meds help so that we can then go back to insurance and demand they pay for the brand name at the generic price.  Our kids are guinea pigs to save a couple of bucks.  I'm so scared.  I'm keeping Ronan home from school today.  He looks like a train wreck with his eyes all dark.  Say some prayers.  I'm hoping he takes a nap so that he can sleep some of this stuff off.

2009 – Late June

Just tucked Ronan in for his nap.  Breakthrough seizures still trying to get through.  He's all snuggled under his yummy blankets. Gave him a kiss and said, "Mommy loves you." Ronan signed, "yes yes yes yes yes yes yes" with the biggest grin.

2009 – July

Ronan's meds are bringing on more seizure or pre-seizure activity; we need to go back on the name brand and get insurance to cover it with generic pricing since breakthrough seizures are still happening.  It is awful that a kid has to prove to the insurance that he needs the better drug.  I hate the medical industry.  

When a series of very unfortunate events brought a problem to light, like those breakthrough seizures, I would document as much as I could about what I was seeing.  I’d date stamp the issue, keep a log of whom I spoke to and record what could (or couldn’t) be resolved.  By the end of that summer, with the help of a young pediatric neurologist and the owner of the small pharmacy we’d been using, the seizures subsided.  It shouldn’t have taken a fight, but getting insurance to approve and cover the better prescription turned into a battle. 

2009 – Late Summer

Breakthrough seizures + generic drugs = whoopsie.  Okay, now we (the insurance company) will pay for the brand drug that actually works to prevent the seizure. Grrrrrrr.....

We revisited breakthrough seizures a few years later.  That time, it was from a technical error. 

2013 – Late Autumn

The Keppra we've been getting since August has been the generic.  I should’ve known. :(  Ronan gets seizures on the generic.  I know we asked for name brand.  When we needed a new script, it obviously didn't get transferred to the new supplier when it got switched to mail order.  I’m on the phone with them right now. :(  So mad and sad and feeling like poop for watching Ronan have seizures.  

Getting insurance to approve and cover new prescriptions takes time.

By Cathy Jameson

I never jumped on the bandwagon to make vision boards or do any sort of journaling.  Those are creative avenues people have used to focus on their goals and dreams.  To me, it seemed like extra work.  I have enough work to do on a day-to-day basis trying to keep up with my kids.  Don’t get me wrong, I do dream and I do have some great goals.  I’ll talk about them and write them down, but I don’t have a separate book or wall space where I display those.  I love that others have the time and creativity to keep up with those activities.  I love that they will come up with new goals and dreams, oftentimes using January 1^st as the day to set or restart something.  When I read somewhere that some people choose a word to focus on when the New Year begins, I thought that might be more my speed. 

Pick just one word? 

That’s easy! 

Tired.  J

I don’t think the goal of that activity is to pick a word that drags you down, though.  The word is meant to inspire throughout the year.  Even though I can get super tired on some of our busiest days, I don’t need any visual reminders that I am.  The goal of picking the word is meant to be something you strive to achieve.  It’s supposed to be an inspiration and maybe a guide for you if you’ve fallen off a path you’d set out to travel.  Picking just one word may be difficult, so some people have set up word generators on their websites that will randomly chose a word for you.  Since I’ve never done this before, while the kids were all sleeping in on New Year’s Day I thought I’d give it a whirl. 

Going with a Christian-based  writer’s word generator, I liked what I saw. 

Wondering how random these random-word generator things could be, I tried a different one.  This time, the word was offered after I answered several questions.  No question was too personal, but each of them did have me reflect on life.  Life’s been…a lot.  It’s been difficult.  It’s been exhausting.  But, it’s also been filled with blessings, extra family time, and some moments of peace.  Another Christian-based website, I liked this word that was generated for me also!

By Cathy Jameson

The kids give me a hard time when I take a photo when we’re at church. MOM, it's not allowed.  MOM, you should be paying attention.  MOM, you know you’d be mad at us if we did that.  They liken it to a mortal sin (it’s not).  They tell me it’s distracting (but I do it so stealthily).  They tell me I should wait ‘til later (but then the moment is gone).  So I snap photos when I see something that needs to be more than just a memory.  I did that on Christmas Eve when Ronan did more than just go with us to the Vigil Mass.  

I had to.  

Not only did Ronan walk into the little chapel by himself (just walking in is a feat), not only did he sit without fussing (it can take some coaxing to get to the pew and then stay in the pew), but he was showing interest in what was going on–without any prompting from any of us!. 

For many years, I’ve shared that we’ve had to split up for Mass.  Ronan just can’t handle it.  So that the rest of us can still attend, my husband will go to the early one, and I’ll go to the later one.  None of us likes that set up, so every few months we try, try again to bring Ronan to the church.  Since the end of September, Ronan’s been able to join us every few Sundays (or Saturdays) once again.  Depending on which church we go to, and also what time we go, he is finding success in joining us.  We don’t know if it’ll work until we go back each weekend, but it's been an exciting part of our weekends to have Ronan right there with us at church.  

I was really hoping that with all of the recent practice, and with the on-going encouragement from the siblings, that we could all go to Christmas Mass. 

Could he handle one that might be a bit longer than a regular Mass?  Could he handle the lateness of the time of the one we picked (9pm)?  Could he sit through the whole thing, or would he and I be back in the car even before the entrance song began as happened last weekend?  Christmas is my favorite holiday.  Christmas Mass is the most important Mass of the year for me.  I had my heart set on our family, plus extended family who were visiting, going together instead of being forced to split up.

Before we left the house, we’d told Ronan the plan.  He seemed agreeable.  Then we packed his favorite book and picture.  But I’d forgotten those in the car.  Things could’ve ended poorly without those comfort objects.  But they didn’t.  When I thought he might decide 12 minutes in was plenty (out of a typical 60 minute Mass), he surprised us.  He stayed!  And he started to follow along.  Ronan even gently held my hand.  

That feeling, when your non-speaking, super sensory, severely delayed adult child with autism reaches for you and holds your hand in his - what an amazing feeling!  

The rest of the time Ronan was with us was absolutely perfect.  He didn’t sit, stand and kneel with us, but he sat ever so patiently waiting and listening.

By Cathy Jameson

I keep getting it wrong, so I keep asking my daughter.  “What was the name of the thing?  The thing you did for Literature class?” 

“It was the Chain of Regrets," she tells me for the fifteenth time this week. 

“Oh, yes.  Thanks.  I keep forgetting,” I sheepishly reply.  Having never heard of that phrase, I learned that it came from a lesson her Literature teacher was presenting while reading a book by Charles Dickens.  I trudged through only one Dickens’ book as a young teen, Oliver Twist, but was familiar with the story my daughter was reading for class.  They’ve acted out scenes of A Christmas Carol, even wearing a large paper chain to bring the story alive. 

“You are fettered," said Scrooge, trembling. "Tell me why?"

"I wear the chain I forged in life," replied the Ghost. "I made it link by link, and yard by yard; I girded it on of my own free will, and of my own free will I wore it.”

Link by link, and yard by yard.  Oof.  What a heavy weight to bear. 

I could probably drop some of the heavy weight I’m carrying around.  I have a lot going on, not just because of the time of year, but because of juggling life in general.  Being mom to many makes life super interesting and super busy.  With the Christmas season about to begin, I’m in overdrive.  I'd promised to do a better job of keeping our focus on Advent this year, but the Advent season has been a blur.  I hate that I’ve rushed through it and even skipped over parts of it.  If I’m counting them, that’s probably Regret #257. 

Regrets. 

I think we all have them:  Not taking an opportunity.  Ignoring a nagging feeling.  Walking away from something we later discover would've been a blessing.

In Memoriam: Ed Arranga (Read the obituary here.)

By Cathy Jameson

Eternal rest grant unto him, O Lord,

and let Your perpetual light shine upon him.

May his soul and the souls of the faithful departed

rest in peace.  Amen.

---

Date: Thursday, May 7, 2009, 11:52 AM

Cathy, I can get you a free pass to autism one - can you come??

KIM

That would be awesome!

After getting that email from Kim, I quickly got to work brainstorming a weekend getaway.  She and other Age of Autism writers would be attending the event, and I wanted to meet them.  I’d read that for autism parents and advocates, this was the biggest and best conference of its kind.  I, of course, wanted to go.  But how?  At the time, I was a stay-at-home mom to five children.  My oldest was only 8 years old.  The baby was still just a baby.  Friends had already offered to let me stay with them in their hotel room if I could get there.  Our nanny offered to work longer and be available through the weekend should my husband need any extra help if I could get away.  Things were falling into place, but the last task was to figure out if I could afford the flight to get half-way across the country to where all the autism action was taking place.  With the help of one more friend, I could. 

So, I did.

I remember sharing that news with Kim in that email thread:

My American Airline pilot friend got me buddy passes.  I'm going to Chicago!!!!!! 

All those exclamation marks showed just how excited I was.  Kim replied:

Just you?  I'll have Teri Arranga put your name on the list.  Can't wait to meet you, Cathy.

KIM

I'll arrive mid-day Friday and leave mid-morning Sunday. 

Thank you so much!

Cathy

Kim wrote back:  Find me! Hug me!  :)

I know I was still smiling from ear-to-ear when I wrote her back:  I'll probably bowl you over as I run in there with all my excitement :) Let me know what the tickets include. I would be happy to volunteer if anyone needs a special helper too. What an opportunity!  Can't wait to meet everyone soon. 

Our email thread ended with Kim adding:  See you there! I'll brace myself for the tackle.  :)

Rest assured, I did not tackle Kim.  I did finally get to meet her though.  I also got to meet Dan Olmsted.  After only communicating through emails and via Yahoo! Groups, meeting them, my mentors, was a gift. 

I later shared with Kim that, “So many people were anxious to meet the Age of Autism team and to thank you.  Hanging out the first day – heck it was the first hour I was there – for coffee and snacks with you and Dan was the icing on the cake for my weekend…it had only just started and only got better!” 

That meet up was the first of several conference meet ups.  I was able to attend AO in 2010 and again 2011 through the generosity of my parents.  Knowing how important it was for me to be there, they made sure I got there.  They also gifted us the chance for my husband to go with me.  Those weekends away helped both of us know more about autism.  Those weekends helped us know better what treatments were currently available, too, and which ones our son might benefit. 

I haven’t been to a conference in years.  Life got busier.  Time got away from me.  My typical kids’ schedules and needs kept me closer to home.  I would still tap into the AutismOne community as I saw opportunities and made sure to recommend Ed and Teri’s knowledge to others, especially to the new parents as more online resources became available. 

With news of Ed Arranga’s passing, I wanted to share one of the posts I’d written after coming back from an inspiring and exhilarating weekend away with hundreds of my closest friends. 

---

To Ed’s family, our hearts are broken for you. Our prayers are with you as you grieve. 

Autism One: Refreshing My Soul

June 11, 2011

By Cathy Jameson

It takes moving mountains for me to get away for a few days. So much work is involved in order to walk out the door that I sometimes wonder if it’s really worth it to leave. Sometimes the mountains I have to climb to get out of the house are small ones like piles of laundry. Other mountains are more complicated and require extra time to plan.  Those include ‘the everything’ I do all day long with five children, a traveling husband and home schooling. I have to create lists of who does what and when and why.  I leave a stockpile of all sorts of foods, supplements and supplies for my family when I leave for my multi-day getaway.  All of the preparation brings me closer to a conference hundreds of miles away. You’d think I would have already figured out a better strategy to be fully ready to travel, but it’s still a lot of work even though this is my third year in a row to attend.

By Cathy Jameson

From my personal notes, November 15, 2010:  Ronan said ball today. He was watching a School House Rock video, and a ball was on the screen.  Out came, "bahhhwl" while he signed it, too. Hello, pre-verbal boy that I love so much!

Ronan signed and said ball another time that same week.  Lifting his little arms up, he looked at me and signed a perfect ‘ball’ sign.  The look he gave me filled me with such gratitude.  Curious if I’d documented any other verbal successes, I searched for more entries.  November 1, 2009:  We know Ronan can talk. It's trying to get him to know he can do it. That is the hard part. We've heard about using prompts to gain instructional control (love that ABA), and wahoo!  It's working.   

Six weeks later, we heard more verbal goodness.  Dec 17, 2009:  Ronan said go and all done this week.  He's working on yes and rainbow and movie and Daddy!!

I’d been using flashcards with Ronan to teach him to read back then.  I was confident he could read, but how could he tell us he comprehended anything written if he couldn’t speak?  Desperate to hear him verbalize words, I kept praying for speech.  Focusing all of my energy on finding a form of communication, any form that would be effective, we’d begun to label things in the house – some labels had images above the word, some labels had no images.  It was a slow process, but hard work on his part paid off.  

March 16, 2010:  Ronan read the letter M today and said /M/ nice and loudly.  Not only did he learn to read recently, he learned to speak some of the letters and words.  <insert beaming Mommy smile here> 

During the summer of 2014, I’d noted this:   He sat through Mass again (and said Amen!).

Those were not his last words.  He’d go on to say a few more.

Aug. 22, 2014:  With encouragement from the super sibs Ronan said again a couple of times tonight.  Not clear as day but the approximation was functional, made with full eye contact and was followed by some belly laughs.  When Ronan said again, Big sis said his favorite Cars 2 line.  Every verbal request he made was granted again and again and again.  After today's roller coaster ride of emotions watching my news feed blow up with the CDC's whistleblower news I needed to hear Ronan's sweet, sweet voice again and again and again.

Ronan is a foodie, so whenever he'd eat something delicious he'd quite quickly and effortlessly say 'yum' to show us how much he was enjoying the food.   He’d had that word down pat for some time already.  

April 3, 2012:  So, Ronan sat with me for a tea party, fed me my 'food', made sure I 'ate' it, then looked at me and waited for me to say "yum"...and then he, too, said "yum."

Oct. 15, 2015:  Ronan did well at Mass tonight, although he was on my back for most of it (piggy back - including when I was line for communion)… he said nice and loudly YUM *as* I received communion.  He wouldn’t stop saying yum until I said it, which was half way back to our pew!  It was touch and go for a few minutes before, but he made it through to the end of Mass which means we all made it to the end of Mass.  Taking Ronan to church can be tense.  But we smile, breathe a big sigh of relief, and we remember to thank God for amazing church moments, like tonight's, when they happen.

He doesn’t say anything much anymore.  When we ask Ronan to say yum now, we hear barely a whisper of the last sound /m/.  That’s it.  It’s frustrating for Ronan.  It saddens the siblings.  Ronan’s silence is a constant reminder that parts of life with regressive autism are not what we expected.  Getting the kind of mail we got two weeks was another reminder.

By Cathy Jameson

I had an entirely different post prepped and ready to send to Kim for this weekend.  Halfway home from our Thanksgiving vacation, though, I thought I’d rather keep this Sunday’s post about the recent holiday we celebrated.  From start to finish, our holiday away was good!  It was also stressful, long, and absolutely exhausting.  Oh, the stories I could tell you about Ronan, who travels like a champ but who slept hardly a wink!  But that’s for another day.  For today, I wanted to continue to give thanks.   

Because of the people we encountered along the way, our vacation was actually very good. 

Because of their patience with Ronan, we were encouraged.

Because of their understanding of the great needs he has, we were grateful.

Because of their desire to serve others, we were all very well taken care of.

And those are just the strangers we met along the way!

To everyone who saw Ronan and who gave him the time and assistance he needed, thank you.

To the porters, flight attendants, and crew on the planes and the ferryboat who treated Ronan with respect, our world is better because of you. 

To the specific people who hosted us and showered us with kindness and with generosity, and who filled our bellies with traditional Thanksgiving dinner, thank you!

By  Cathy Jameson

The experimental COVID19 vaccine is only just now available to young children ages 5 to 11.  With an estimated 2.6 million doses administered within the last two weeks, scientists and researchers will have ample case studies to follow should they want to take advantage of that. 

They’ll get to do more than just follow cases with reported medical mistakes happening already across the country.  They’ll be able to track what happens to children when they experience a wrong dose of the Pfizer vaccine or an overdose of it. 

From the west coast  to the east coast, recent dosing mishaps made the headlines.  I do more than cringe when I read stories like those.  Who was prepping the vaccine?  What was overlooked?  What might have been misread or mislabeled?  What prompted the discovery that, oopsie, something terrible just happened?  And, who’s responsible for that medical error and the damage done?  Waivers are signed prior to administering vaccines, experimental or not.  On those legal forms, the patient, in this case the parent, releases the medical provider, or in some of these cases the pharmacy tech, from liability should something go wrong.   The vaccine manufacturers can’t be dragged into any of this as they, too, have been granted a layer of protection.  That means that they can’t be held responsibility for their products or what happens because of them. 

The horror of discovering a mistake as grand as administering the wrong vaccine dose would bring me to my knees, especially a vaccine that’s never been given to children before.  What a slap in the face to a parent who thought they could protect their child by rushing out as soon as these batches became available.  I’d have so many questions and so many concerns if this happened to a child of mine.  The mistakes were only just made, so the news reports have not given too much follow-up information to the public.  Instead of publicly addressing the potential, and quite likely, negative responses a child’s body will endure, the officials involved don’t seem too phased.  Maybe they’re following a ‘keep calm and carry on’ mantra because they’ve offered this simple message:   

Come back.

Come back for a new dose. 

Come back for even more doses after that.

"We apologize for the error, and we are offering another opportunity for the children to be revaccinated," Dr. James Bridgers, acting Montgomery County health officer, said in a statement. 

The manufacturer chimed in about the medical mishap as well. Instead of recognizing the massive mistake made with their medical product, “…Pfizer recommended an additional dose for students as soon as possible.”

1943

By Cathy Jameson

Growing up, I loved Sesame Street.  Blessed to receive a toy that was the actual Sesame Street street, it was a perfect Fisher Price toy that sparked playtime fun.  When I became a parent, my children also watched Sesame Street and also got to play with my old toys, to include playing with my Fisher Price Little People.  Treasured items of mine, I wanted my kids to have an opportunity to create similar memories that I had with characters that I once cherished.

Some days I’d be grateful that a kids’ show like Sesame Street was on when my children were younger.  For the few minutes I’d let them watch TV by themselves, I could switch a load of laundry or catch up on phone calls or emails.  The show had gone from mostly education and entertaining to political by the time my kids started watching, though.  I didn’t wander off too far because of that.  I wanted to hear the conversations the Muppets and puppets were having. 

Some conversations were about typical-kid related things. 

Some were getting a too little edgy. 

Other kids’ shows, and books  I was discovering, were also getting too edgy. https://www.youtube.com/watch?v=MNHeV-9dPCs

With how quickly the television as well as paid pharmaceutical commercials were influencing my very young children, we knew we had to do something.  We immediately turned off the cable. 

We have no regrets that of pulling the plug.  We stream what we want to watch now, or we catch up on news and coverage of other events online.  I know we can’t screen every commercial or juvenile skit that my children may see when they’re on the internet.  But we can shield them from some of the propaganda and normalizing the media is advertising.  If I haven’t been able to do that, we talk about what they or we have recently seen and heard.  Looking at the ridiculousness of what the media has been allowed to do can spark quite a discussion!  It helps me know that they understand the manipulation that’s happening to today’s youth, and it gives me a chance to talk to my kids about what we as a family would like to support.  I can remind them of what we absolutely will not support in those conversations, too.  

The latest example we talked about was injecting make-believe characters on one of my favorite childhood shows and the commentary that followed it.  My older kids could see through the propaganda. “They’re making it look like it’s normal and safe.”  “I hate that word effective that they throw around with this sort of stuff.  It’s been so overused.”  My youngest immediately questioned the act itself, “Why would they do that?  They’re not real, and they’re not even people.”

By Cathy Jameson

Sitting at a red light on my way to an appointment, I glanced over to a small SUV and saw a bright bumper sticker:  NEW DRIVER – PLEASE BE PATIENT.  I hoped that the driver behind the newbie would be patient.  It was a rainy and very gusty day.  Even as a seasoned driver, being on the road that day made me a bit nervous.  Having hydroplaned once due to the heavy volume of water already on the roads, all I wanted to do was go home.  As the light turned green, I watched the new driver cautiously go forward.  If I could’ve, I’d have wished him well before he drove away. 

Seeing that bumper sticker, which several families in my area have gotten for their new teen drivers, I wondered about something.  What if new anti-vaxxers could also be treated with patience like we’re asked of new drivers?  As much as that term can be degrading, anti-vaxxer is a term that describes more people this year than ever before. 

Where it was hardly a second thought, people are now finding themselves questioning the COVID vaccine.  Playing for a new team, the “anti-vax” team, I welcome them with open arms.  Some are grateful for the eye-opening experience they’ve had as they’ve dug into a hot topic.  Others of them, though, are being insulted for waking up to a new reality:  vaccine science is loads different than regular science.  These new vaccine skeptics are being treated terribly for realizing that.  People are getting hammered for just asking a question or for raising the tiniest bit of concern about the COVID vaccine. 

Do your part!

We need to end this now!

What are you afraid of anyway?  It’s just a shot.  

Just take it.  You never had a problem with any of the other one vaccines…

Maybe they didn’t have a problem before with other vaccines.  But others weren’t fast-tracked like this one was.

Maybe they weren’t afraid before.  But others didn’t come with the type of coercion this one has.

Maybe they were fully trusting of vaccine science before.  But other vaccines didn’t rack up as many reports in VAERS as this one has.

By Cathy Jameson

I love St. John Paul the Great.  Growing up, I knew him simply as Pope John Paul II.  Canonized only a few years ago, I cherish the fact that this modern day saint was alive during my childhood.  When he died, I remember it felt like I lost a beloved family member.  I recalled one of his quotes, pictured above, on his feast day, which was on the 22^nd.  That quote has gotten me through hard times in the past. 

While seeing other reminders of this saint all day on Friday, I thought I’d look for some inspiration from him.  He’s got quite a few good quotes, but I kept coming back to this one:  I plead with you – never, ever give up on hope, never doubt, never tire, and never become discouraged.  Be not afraid. 

With how discouraging the news is lately, it has really been hard to remain hopeful.  Even though many businesses, schools, sport and recreational facilities are back up and running, the planet seems to be in a perpetual lockdown.  Stores are open, but customers must still stay six feet apart.  Schools are in session, but children must be masked up.  Sports are in full swing on the weekends, but once fans leave the jam packed stadiums, it’s no touchy touchy of anything or anyone from Monday through Friday. 

I understand the need to be cautious, mindful, and respectful of a virus that is present.  But I will never support all that have been done regarding that virus, including a vaccine mandate for it.  Many people are contemplating walking off their jobs, or have already done so, because of that illicit mandate.  I applaud those who already have who have stood up and said no to it.  I fully support those who’ve faced their fears head on and who’ve been able to walk away from the tyranny.  The People are still under attack, though, and I have a feeling we haven’t seen all that The Machine thinks it can do.

Hurry!

By Cathy Jameson

I remember hearing a few weeks ago that YouTube was going to remove videos that linked vaccines and autism.  Since those two topics are never to be mentioned in the same sentence on social media platforms, I was not surprised by that announcement.  YouTube, like Pinterest, said enough was enough.  Curious to see if some of my go-to autism video resources were truly gone, I opened a new window.  Had all of that helpful and truthful information truly disappeared?

I was happily surprised to see some familiar faces, including our very own Kim Rossi!  She’s featured in an interview on The Autism File Magazine’s channel. 

Autism File Complete Channel

I didn’t want to do too many searches that would tip off Big Brother, but other videos and channels I could still access were:

Generation Rescue

Generation Rescue's Complete Channel

Autism One’s Ed Arranga

Some of the videos I could still find were interviews:

LJ Goes on MSNBC

https://www.youtube.com/watch?v=lV3ri2bcLo4

Robert DeNiro plugging VAXXED

…and then he also gave a shout out to Trace Amounts

Trace Amounts Complete Channel

Back to VAXXED – you can rent it or buy it…from YouTube?  That’s great news! 

Vaxxed Channel

By Cathy Jameson

A friend shared a link for a video with me last week.  Looking at the length of it, I hesitated to start listening to it.  Already late in the afternoon, a time when I face frequent interruptions from the kids, I was taking a chance of starting it.  With how life goes, I don’t always get to finish things I’ve started.  I had heard of the presenter before and wanted to hear more from him.  Deciding that it was no time like the present to at least start the talk, I clicked play.  It was just over an hour long.  And what a powerful hour of listening it was!

Everything Dr. McCullough shared is nothing new.

Everything Dr. McCullough presented is what we know to be true.

Everything Dr. McCullough explained needs to be heard ‘round the world.

It was such a good talk that I immediately shared the link with several friends and family.  I wish more every-day people, more reporters, and those in the current administration would listen to it also.  Dr. McCullough has been offering sound information for a while now.  I want everyone to listen to the data being presented and do something different, like remove the unethical mandates so many are facing.  When those are removed, and when proven treatment options are more accessible, only then could I begin to think that we will win the war being waged against us. 

The battle to protect medical freedom started years ago when state representatives and lawmakers began removing existing vaccine exemptions.  The fight intensified when politicians and medical groups began denying access to existing treatment and therapies.  The outcome of the ongoing struggle is incredible, even though the truth has already been exposed. 

The truth cannot be silenced.  Even though some people try to hide it, it has a way of coming to light.  To those who stand by the truth and who are risking their lives and reputations to share it, thank you.  Your effort and determination have not gone unnoticed. 

With that, I leave you with the speech Dr. McCullough presented to the Association of American Physicians and Surgeons.  If you are moved by it like I was, please consider sharing the link within your own circle of friends. 

Winning the War Against Therapeutic Nihilism & Trusted Treatments vs Untested Novel Therapies

Cathy Jameson is a Contributing Editor for Age of Autism.

By Cathy Jameson

When I saw the latest autism headlines, I was reminded of something I saw published a few years ago. 

Epidural use during delivery linked to minimal autism risk, studies find

Epidurals are not linked to autism in children, new data shows

Back in 2013, researchers questioned if labor induction could raise the risk of autism.  Some reports, which spread like wild fire, said yes, a link existed. I got to share my thoughts about that those findings on air one night.  I’ve not been asked to speak about the latest news, but I wasn’t shocked to see some of the information didn’t add up.

In the first study, which tracked nearly 390,000 children born in Canadian hospitals between 2000 and 2014, 1.5% of those exposed to epidural during birth were diagnosed later with autism spectrum disorder, the data showed.

Another news report shared that, “Those exposed to epidural during birth have about 5% increased risk for autism…” but then stated that, "Parents can be reassured that there is no link between using epidurals and autism spectrum disorder and, based on current evidence, the risk of autism spectrum disorder does not need to be factored into the decision on whether or not to use epidurals during labor…"

But wait, 1.5% of those exposed did receive an ASD diagnosis.

By Cathy Jameson

As the world outside my front door becomes more and more unrecognizable, I was able to find something good to dwell on last week.  Ronan was given a great compliment.  I was, too.  We heard these at an appointment from a specialist who’s been providing some of Ronan’s care. 

Stopping at the doorway of the exam room and smiling toward Ronan, the GI doctor said, “You look great!  It looks like you grew since last time we saw you here.”

“Yep, in height *and* weight”, I happily said.

A few winters ago, Ronan landed in the ER.  Long-time readers will remember that story and how a typical day went from bad to worse: 

From The Perfect Patient December 2019 …The team of nurses and doctors were quick to help alleviate one of the problems, but we all agreed that with all of Ronan’s existing medical issues and complications, we were in the wrong place.  Ronan would need to be elsewhere with a team of pediatric specialists who could evaluate and treat him.  Not wanting to waste any more time, an immediate Emergency Room-to-Emergency Room transfer was ordered. 

I’ve never had to follow an ambulance that was transporting one of my children.  I hope I never have to again…

Readers may also recall that, with the help of some quick thinking medical people, things got a bit better.

…the team of compassionate caregivers and medical staff assigned to his care exceeded our expectations.  I lost count of how many we’d encountered, but over the course of the two days he was admitted, at least 30 people personally evaluated, managed, and executed multiple tests and procedures for my son.  That constant, direct care helped ease our minds.  They collaborated and kept us informed of everything as things were happening throughout the stay.  Best of all, they were able to determine what the major issue was that brought us to them, which meant that they could send us home with a treatment plan!    

We’ve continued to keep in touch with the lead doctor and remain comfortable with the advice Ronan’s received under his care.  Dr. M’s immediate response then, and his active involvement now, have helped keep us on a good path. 

While driving to that recent appointment, I reflected on the problems Ronan had that brought us to this exceptional doctor.  They existed long before Ronan landed in the ER at the children’s hospital.  Ironically, we’d had an existing appointment with his office booked for the next month, but we were blessed that we didn’t have to wait for it.  Dr. M could treat the acute problems, and he wanted to begin treating the chronic issues no one else cared to.  We were speechless.  Once we found our voices, we said, yes, of course, please.  Please help us help our son.

By Cathy Jameson

Science is the search for knowledge.  It is using that knowledge to solve problems.  When you take part in science, you understand the world better.  During science investigations, you gather evidence and look for patterns.

I saw that wording on an elementary-school science lesson recently.  I agreed that science is the search for knowledge and that solving problems comes from what you do with the knowledge.  When I got to that third sentence the first time, I read it too fast and incorrectly.  I read it as, “When you are part of the science experiment, you understand the world better.”  If there ever was a time that I felt like we were stuck in a science experiment, it’s now.  

The day I saw that paragraph was the day Joe Biden demanded https://www.whitehouse.gov/briefing-room/speeches-remarks/2021/09/09/remarks-by-president-biden-on-fighting-the-covid-19-pandemic-3/ again that all Americans to be vaccinated.  Millions have opted for the shots, but he specifically spoke to the “holdouts” that day: 

“Many of us are frustrated with the nearly 80 million Americans who are still not vaccinated, even though the vaccine is safe, effective, and free.

This is a pandemic of the unvaccinated.  And it’s caused by the fact that despite America having an unprecedented and successful vaccination program, despite the fact that for almost five months free vaccines have been available in 80,000 different locations, we still have nearly 80 million Americans
who have failed to get the shot. 

As your President, I’m announcing tonight a new plan to require more Americans to be vaccinated, to combat those blocking public health. 

We’re going to protect vaccinated workers from unvaccinated co-workers.  We’re going to reduce the spread of COVID-19 by increasing the share of the workforce that is vaccinated in businesses all across America.”

Ignoring the fact that some people can’t opt for it for valid reasons, Biden is furious that others are declining to get it, even though it’s free. 

“And my message to unvaccinated Americans is this: What more is there to wait for?  What more do you need to see?  We’ve made vaccinations free, safe, and convenient.”

Biden continues to complain that not enough people are yet fully vaccinated.  He wants to close in on the miscreants.  He’ll do that by limiting their movement.  Taking away rights and privileges was once just a strategy on paper, but now it’s a priority. 

Source: Dictionary.com

By Cathy Jameson

If I did a quick internet news search for the word regardless, I am sure I’d have thousands of hits that included this statement:

…regardless of vaccination status

Masks are required for outdoor events regardless of vaccination status.

Masks are required for indoor events regardless of vaccination status.

All visitors to the building are to social distance regardless of vaccination status.

Weekly COVID testing will be required regardless of vaccination status.

Public meetings are back on schedule. We invite all to join regardless of vaccination status.

The definition of regardless, per Oxford Languages, is without paying attention to the present situation; despite the prevailing circumstances.

Declaring one’s vaccine status was not a requirement for more contagious illnesses for indoor venues in previous years let alone outdoor ones.  Proving one’s health status with a nasal swab was never required to attend work or college, even though other viruses are prevalent year round.  Regardless, and more importantly, because of prevailing circumstances, the present situation many are now living because of one virus is dire. 

It’s dire.  And now, in some places, it does matter what one’s vaccination status is. 

Vaccination status will determine if nurses keep their job at the hospital regardless of their qualifications.

Teachers https://apnews.com/article/health-religion-coronavirus-pandemic-c58f8577203b8316299f9fa90ebf7578 are facing the same dilemma.  They are being told they must get the jab despite their years of dedication in their field.  Will they take the jab and all the risks that come with it just to keep their job? 

Another important question, can school districts handle losing their staff or recover from a massive teacher walk out?  The NYC school system stands to lose compassionate, highly qualified professionals and their many years of experience.  Losing them will jeopardize the continuity of education that all students require to be successful in the classroom.

By Cathy Jameson

I have never in my adult life heard one response used more frequently than, “Because of COVID.”  It doesn’t matter the setting – in a school, store, doctor’s office, playground, or at a concert.  Because of COVID is said all the time.  It started last year: 

Sorry, kids. Sports are cancelled …because of COVID.

Sorry, staff.  All meetings are now virtual …because of COVID. 

Sorry, Ma’am.  All regularly scheduled appointments are limited …because of COVID. 

Sorry, travelers.  Flight restrictions are now in place …because of COVID. 

I expected and grew used to the adjustments we were asked to make because of COVID in March of 2020.  Back then, the 2-week pause made sense.  I thought it was a reasonable request, and I actually welcomed it.  I didn’t expect the restrictions, and the go-to response …because of COVID to continue to hamper parts of life for as long as it has.  But even this week, I heard several times …because of COVID being used in a school setting, in a medical setting, and in a political setting. 

It’s become a response, an excuse, and a justification.  Since 2020, it’s been said countless times.  Some weeks, I hear it daily.   I respected it …until I didn’t. 

…because of COVID local sports are still cancelled or at limited capacity or come with major restrictions.  Unless you’re a major sports team.

…because of COVID meetings and office get togethers are encouraged to be virtual.  Unless it’s your birthday and you have some celebrity status. https://www.inquisitr.com/6494809/see-leaked-photos-videos-of-barack-obamas-decadent-birthday-part

…because of COVID restrictions are still in place in the community.  Unless you believe you’re above the law.

…because of COVID, air travel for passengers and some airlines has taken a hit.  Unless you’re an unmasked elected official shirking your work. 

I’m guessing you heard it as many times I had last year.  You’ve probably heard that catch phrase most of 2021, too.  It’s not so much a catch phrase, though, is it?  Now, it’s being used as a threat.

By Cathy Jameson

It was refreshing to step away from some of life on our short family vacation last weekend.  I've shared other vacation stories before offering a peek at our family’s life and love that I can share our reality. I also like to be able to share travel suggestions that have worked for us.

For this get away, we stayed in a hotel the entire time we were out of town.  I can’t recall the last time we did that.  When we go away, we usually stay with family or friends who welcome us and all that we bring – Ronan’s favorite things, his safe foods, his water-proof bedding/sheets, and a lot of excitement from the siblings.  We brought all of that to our destination and something more this time – my Mom.  I was grateful that she could join us on our little adventure. 

Traveling with a young adult with autism can be challenging.  We’re seasoned travelers, including Ronan, but staying in a sold-out hotel, where every room is booked, was a bit intimidating.  

Ronan is non-verbal.  But that doesn't mean he isn't loud.  

Would other guests hear him?  Would someone complain?  Would he even be quiet if we asked him?  

Ronan is easy going.  But that doesn't mean he will adapt quickly to the massive changes in his routine. 

Would he want to be outside at the park, at the beach, or on the bay all day doing things he doesn't normally do?  

Ronan is a happy kid.  But that doesn't mean he doesn't have sad moments.

Would he want to leave as soon as we arrived, like he's requested before?

We brought all of Ronan's favorites with us in the hopes that having something from home would be encouraging.  It was.  Ronan definitely enjoyed some of the things we did.   

On our first day, which was the longest day we'd be outdoors, I knew that Ronan would tire much quicker than the rest of us would.  That's why we researched what accommodations the amusement park could offer someone with disabilities.  We have an adaptive stroller for when Ronan needs physical assistance, but as clunky and as big as it is, it was better to rent a wheelchair from the park.  Plus, Ronan loves wheelchairs.

We usually run a photo with our posts, but Cathy asked if we had a song that speaks volumes to us, and Bob Marley is mine. Get Up Stand Up. Stand Up for Your rights. Don't Give Up the fight. It's our autism anthem.

By Cathy Jameson

A few weeks ago, commenter TOB left me this note:  

Great post as always. I was listening to a Tom Petty CD this week and thought it's just a matter of time before "Won't Back Down" is included in a Sunday post. This felt like the "Won't Back Down" post to me :-)

Since that July 11th post, the song TOB mentioned has been running through my head.  Several other songs, many with a similar theme, have been running through my head as well.  Things are getting uglier and uglier out there in the world.  Mandates, uncertainty, and a teeny tiny bit of stress is creeping closer to home.  I tend to be a hopefully-ever-after kinda girl. 

But not lately.

Some days, when I just don’t have the words to respond to it all, I must turn on some music.  Before I fight the good fight against the madness and impending mandates, I'm taking a short break. While I head out of town to the beach with my family to rest and relax for a few days, please enjoy this Won't Back Down playlist.  Thanks, TOB, for inspiring it! 

Tom Petty (God rest his soul) and the Heartbreakers singing I Won’t Back Down

Pink Floyd and their ever famous Another Brick in the Wall

Twisted Sister screaming their pretty little heads off with We're Not Gonna Take It

Isley Brothers encouraging us to Fight the Power

By Cathy Jameson

After both my sister and my mother asked me if I'd seen Mike Rowe's latest Off the Wall post, I knew I needed to read it. I trust my family's input on several topics. I also tend to like and agree with several things Mike Rowe has shared.

I see many thoughtful take-aways from him, but the one part that stuck with me the longest hours after reading it was Mike Rowe's regrets. How many of us in our community have shared the regret of not listening to our instinct? Of taking a medical professional's biased opinion as actual fact? Of wishing we could've done things differently? I'd say many of us have.

Regrets can be unfortunate, but they can also keep us from making the same mistake again. To Mike Rowe, thank you for sharing your thoughts, your wise words, and those regrets. You'll grow from them. I guarantee it.

###

Off the Wall - Read the post and bookmark Mike Rowe's blog here.

Mike – I read several months ago that you got the vaccine. I’m glad. But I’m also curious. You have a lot of people on this page who respect your opinion - many of whom I’d wager are unvaccinated. Have you encouraged them to follow your example? If not, what are you waiting for? As you surely know, Delta is raging. The sooner we’re all vaccinated, the sooner we can get back to normal!

Steve Manchin

Hi Steve

The short answer is no - I have not publicly encouraged anyone to get vaccinated. In fact, I have recently declined to participate in several PSA's designed to persuade people to get the jab. That’s not because I’m opposed to vaccines, obviously. Vaccines have saved more lives than any other advancement in the long history of medicine, and to your point, I got the shots the minute I was eligible. But I’m not a doctor, Steve, and even though I occasionally play one on TV, I’m not inclined to dispense medical advice to the people on this page.

True, I did appear in a few PSA’s early on, back when they assured us that locking down was essential to keeping our hospitals from being overrun. “Two weeks to flatten the curve!” Remember that one? That of course, turned out to be untrue, and I regret my role in helping perpetuate that particular falsehood. I also regret what I said during the first Zoom show to air in primetime. It was an episode of After the Catch, where I discussed the lockdowns with a few crab-boat captains. At one point, I looked into the camera lens on my computer and said, with uncharacteristic earnestness, “For the first time in a long time, it appears we’re all in the same boat.”

By Cathy Jameson

Scrolling through a local news website, I saw a nurse being interviewed about the COVID shot.  The blurb that accompanied the video shared that the “…assistant dean of the Columbia University School of Nursing says there needs to be a ‘multifactorial’ approach when trying to convince people to get vaccinated.”  The Associated Press also shared the link with the nurse,  who’s part of this CDC-funded organization.  

https://www.youtube.com/watch?v=0NLHJbOon0Q

As I watched, it was clear that the message was not to inform or educate the public about the shot.  It was to do everything possible “to get the last percentage of people vaccinated”.  Since that hasn’t happened, despite an abundance of free vaccines being available, groups, including the US government, are using all sorts of approaches to peer pressure everyone to get vaccinated.  The nurse suggests using other people – spokespeople of the same race, church representatives, youth ambassadors, and celebrities.  Other techniques are to use avenues like social media.  Getting the right people to tell their own story to these last few Americans could be convincing.  Smiling through the short interview, she seemed proud of strategies and tactics she suggested to raise vaccine confidence. 

All over the web, like clockwork, other local news stations and websites shared the exact same message. 

The nurse’s message aligned with Biden’s latest complaint that not every American has gotten the shot. 

I know he struggles sometimes, but Biden, like those funds the nurse’s mission, have not gotten the message that some Americans do not want the shot, cannot take the shot, and will not get that shot.  These Americans aren’t perseverating their message as much as the administration currently is, but they’ve been vocal, too.  

They’ve confidently said no.

They’ve politely said no, thank you.

They’ve emphatically said no!

By Cathy Jameson

We had a very busy week last week.  Busy is good!  But it means I didn’t have a chance to sit down and type the piece I had intended to type.  Instead of something fresh for you today, I’m posting an old story I shared with family and friends.  

We parents have had to be very creative with our kids – their schooling, their therapies, and their special diets.  This story is about a time I tried to make something healthy.  You’ll be so glad your device doesn’t come with smell-o-scope while reading this.

Enjoy!

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I woke up a little past 7 o’clock this morning and got a whiff of something rancid.  Ohmyword.  The smell.  Ronan was still asleep when I sniffed what I sniffed, but I immediately thought, Oh, no.  Ronan must have pooped sometime in the middle of the night.  Poor kid.  I’ll have to wake him up to change his diaper.  I walked into Ronan’s room, and the smell disappeared.  That was good.  But that meant that the source of the stink was coming from somewhere else. 

After changing Ronan, I walked toward the kitchen.  The smell permeated through that room and into our den.  Was it the garbage can?  No, but I took the garbage out anyway.  Strange.  The garage smelled awful, too.  My gosh!  What is that smell? 

I walked back into the house and called my husband, “Hey, I think something died in the garage.  Call me back when you get a chance.”As I walked toward the kitchen, my oldest came around the corner.  “Mom!  You left the stove on…all night?!”  I nodded and said, “Honey, it’s bone broth.  You’re supposed to cook it for hours and hours and hours.”

I repeated that first sentence in my head:  …it’s bone broth…

By Cathy Jameson

When I’m bored, I pop over to Yahoo! to see what news has been posted.  I know it isn’t the best place to get accurate or unbiased reports, but I skim through the page anyway.  Most of the article titles lately sound like what I used to see in The Enquirer.  When I was a kid, The Enquirer was known to be more of a gossip rag than an actual newspaper.  Even so, I loved seeing it at the grocery store.  While Mom was getting our food on the conveyor belt I’d peek at the wild headlines. 

Man, they were wild! 

Headlines are meant to grab readers’ attention.  One certainly grabbed my attention on the Yahoo! main page last week:  How To Deal With Friends Who Won’t Get Vaccinated

I know what I need to do for myself and for my family, so I feel absolutely no pressure when I read stuff like that.  I clicked the link, though, to see how others are “dealing with” this situation because curiosity got the best of me. 

As I read the very short article, I quickly found two statements that were false:

- Unvaccinated individuals are at a greater risk for contraction [of COVID19] than vaccinated ones.

- Their reasoning [to not get the vaccine] tends to be rooted in emotions rather than science.

A recent news report from the BBC proves that vaccinated individuals can contract the illness, and data being collected by the Kaiser Family Foundation (KFF) shows that adults are researching vaccine science before making a decision.  Their reasons for declining include valid concerns not just about side effects but also because of the newness of the vaccine.  Other reasons for saying no are that some just don’t want the vaccine.  Some don’t trust the government, and some think they do not need the vaccine.  All those important reasons aside, I did agree with this part of that article when the author shared that:

-Your social boundaries must be respected

Yes!  This!  All day long! 

…you can ask that they [the unvaccinated] respect your boundaries, just as you are respecting theirs by not pressuring them to get vaccinated.

Yes again! 

Please, if there’s anything this short article can impart, let this be the takeaway – don’t pressure anyone to get a vaccine they don’t want or need. 

Most people I know who have not opted for a COVID shot by now aren’t going to get one.  You can bully them, bribe them, jeopardize their rights, or call them every awful name under the sun.  They are still not going to get the shot.  It’s not because they’re not hesitant about it (definition of hesitant from Oxford Language: tentative, unsure, or slow in acting or speaking).  It’s because they flat out do not want it. 

Their reasons to decline the COVID19 shots are not based on emotions, as the article suggested, but could be based on a current medical condition.  It may be because of a previous vaccine experience, either theirs or of someone close to them.  Sure, emotions can come into play as they consider the pros and cons, but emotions are not the driving force.  They’ve thought this through, like those who were surveyed by KFF, and are not going to be swayed.  Several of the commenters responding to that Yahoo! article seemed to agree on that.  They were vocal about one more thing – if you got the vaccine, why are you worried that others have not?  Does that mean that you, the vaccinated, don’t truly believe that they work?  

That does seem to be the $64,000 question. 

When I first saw the short article last week, I laughed.  Not in a mean way, but I laughed because the push to get everyone vaccinated is everywhere, even in the Lifestyle section of an online newspaper.  Before I read it, I did stop and wonder if the article would stoop so low as to call the unvaccinated names.  They didn’t, thankfully, but others have threatened them or are rebuking them. Some in office have also offered false information in their quest to vaccinate all. 

By Cathy Jameson

One morning a little over a month ago, I was catching up on some posts in an online group.  While sipping my coffee, I scrolled to the newest message.  The commenter said that people who choose not to vaccinate should “thank the rest of us for taking public health seriously."  All of us "…should do our part to bring normal back to everyone."  Not finished with all that she had to say, the poster shared that she’d gotten the vaccine.  Wanting some sort of recognition for that, she continued more curtly, "You're welcome, unvaccinated folks."  

This woman stayed on her soapbox a little bit longer and requested that the unvaccinated stop spreading misinformation.  I was unsure why she asked that because previous comments left by others included vaccine data directly from government agencies that oversee the vaccine program.  Maybe she didn’t like that some of that data was of documented vaccine injuries.  Far from done replying to the very polite responses people were leaving her, regardless of where their data was being cited, she had one more thing to say.  She insisted that, “The vaccine is helping you.  How?  Whether it's in your arm or not, the vaccine is the public good working for everyone."

What a message to wake up to!  

I wanted to reply, and had I known the people in this group a little bit better, I would have.  But I chose not to.  I’ve been replying to that kind of irrational, hateful speech for years.  This woman, who I’ve yet to meet in person, worked herself up into a tizzy and by the time I caught up, she didn’t need my input.  Plus, others had already graciously chimed in.  Other parents had responded to the indignant comments and requests before I even had a chance to even open the thread.  Who were those other people?  Several of them had previously stated that they were pro-vaccine.  They were just not pro-vaccine for one of the COVID vaccines, which was the topic of that particular thread.

“I am vaccinated, but I will not get the new one.  I won’t allow my children to get it either,” several shared.  I appreciated that I wasn’t the only one who had the same thought.  I walk into some message boards thinking I’m the lone “anti-vaxxer”.  On this particular board, there were quite a few of us.  And, dang, did they let this woman have it.

“Thank you?  For you getting the shot?  I didn’t ask you to do that.  You did that on your own.” 

“Nothing about this vaccine is normal.”

“If this was really about public health, we wouldn’t be forced into experimental shots.”

“Do my part?  I am, by not falling for the hype.”

For not being in the “anti-vaxxer” movement for as long as I have been, the responses I was reading were pretty good.  I sat back and read some more.

By Cathy Jameson

When they rolled out earlier this year, my college-aged daughter shared that she was not interested in getting the COVID shot.  Growing up watching her younger brother suffer through a vaccine injury, she knows that health doesn’t come in the form of a jab.  I wish others her age had the knowledge she naturally gained when her brother fell ill.  I’m grateful they were spared watching a sibling suffer, but past personal experience certainly does help shape future medical decisions.  

I hadn’t worried that Ronan’s big sister would opt for the experimental injectable until a little over 2 weeks ago.  That’s when her college announced their return-to-campus plans.  The vaccine hadn’t been required, per previous parent reports, up to and well past the college’s May 1^st acceptance day date.  But getting that experimental vaccine is now part of a new protocol to keep the campus “safe” and fully in-person. 

For many, that decision was perceived as a huge relief.  Finally!  We can go back to normal! some parents shared on the school’s family page online.  Good, everyone should be vaccinated, was another type of response offered.  Others, like myself, were not quickly celebrating this rash, so it seemed, decision.  Incredibly disappointed, I added a comment stating my frustration. 

Later, finding each other off the family page, other parents and I banded together to discuss this unexpected change. 

A Bit of a Back Story

Several restrictions were put into place when news of the coronavirus hit last year, but campus never completely shut down during the 2020-2021 school year.  Classes were still held, and grades were still being recorded.  Only a few colleges, I believe, could boast that. 

During both semesters last year, COVID spread through the student population at my daughter’s school as it did through many other schools.  Since it is a virus, that was to be expected.  Like other places, the school had procedures set up to minimize the spread and to care for students who contracted it.  Providing separate housing for the duration of the illness, including for my daughter, the few outbreaks that did occur were handled quickly and, we thought, well. 

Thinking the worst behind her, we expected that the upcoming school year would start a little less rocky. 

Oh, how wrong we were.

Papers Please!

The new requirement for the Fall includes getting one of the experimental COVID vaccines or asking for an exemption to be granted.  If the exemption is approved, it will be noticeable who is and who isn’t vaccinated as masks must be worn by the unvaccinated.  Basing fear over facts, those students, and faculty and staff who also decline one of the 3 EUAs, will be treated as 2^nd class citizens.  They, and only they, will face COVID-related restrictions, some that are no longer being practiced in the surrounding local communities.

Cathy shares the blessings of having a strong husband and father for her five children. Happy Father's Day to all the AofA Dads.  I was blessed with a Dad who looked out for me (and my 3 daughters) until the day he died at age 94.  Autism and life's curveballs create lions - and lemons.  Here's to the lions for whom Fatherhood is more than a photo opp. Happy Father's Day!
Love, Kim

By Cathy Jameson

Through his father’s eyes.  What does he see?  Does he see the same things I do for Ronan?  Sometimes.  Maybe.  Yes.  But not always.  I am the day-to-day provider.  The main caretaker.  The maker of the schedule and creator of all of the meals.  I take care of the therapy.  I drive to all of the appointments.  He can do everything I can do, including defend important rights. 

But does he?  The father?  Does he do all the things I do?  He does.  A little bit.  Sometimes. 

He can do everything that I can do.  He also does so much more!  I’m not ashamed of that.  Nor am I less than he because of that.  I’m the mom.  He’s the dad. 

And oh, what a dad he is!  

I know other families who are going this thing called life without a dad like Ronan has.  Their workload is doubled.  Their stressors are greater.  Their burden is heavier.  I thank God every day that Ronan’s father is here.  Not every day is a perfect day for him, or us.  Far from it!  But it’s a day for us to be together, to work together.  It’s a day for us to care for a young man with severe autism and multiple medical conditions.  It’s a day for us to not give up but to always remember to try. 

And when trying once doesn’t work, it’s a day for all of us to try, try again. 

No matter the path…

Good morning! Below is a BEST OF by Cathy, who has the day off.

By Cathy Jameson

I couldn’t find the right words last week. Today, I feel like I’ve found my voice again.

In reflecting on a few things that had me feeling so down in the dumps earlier, a few people came to mind: the pro-vaccine crowd, the CDC, the mainstream media and some doctors and their medical staff. When those folks crossed my mind, I let them and their negativity invade my thoughts. I wouldn’t be here without them though, so I thought it time to say thank you to those folks. Yes. A thank you. I want to express my gratitude for their contributions, especially their latest ones.

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To the Pro-Vaccine Crowd who continues to add insult to injury (vaccine injury, that is), thank you! Really. I want to thank you for every new Vaccines Are Safe blog, article, interview, FB comment and social media message you share. Why? Well, for some new parents, and for those parents who are on the fence about vaccines, your words spark a question. They’re asking, “Are vaccines really all that safe?” That questions leads to a search. That search turns into a discovery. That discovery reveals a story—a story of a child with an unfortunate vaccine injury. As they read that story, a seed is planted—a seed of doubt. Why doubt? Because you, the pro-vaccine crowd, say the exact opposite, and quite brusquely I might add, of what the vaccine injury story is stating. It’s no wonder that new parents are thinking that maybe vaccines aren’t safe!

It’s through that revelation and that seed of doubt that parents begin to search for further info, info which you, the pro-vaccine crowd, consistently neglects to mention in your pieces. Parents want that information. Where must they turn then to find that info? To other parents, of course!

P.S. That’s where I come in.

Here’s why. When I write, it’s with honesty and it’s peppered with all sorts of undeniable facts. When you write, as a pharma-influenced blogger, writer or newscaster, it’s heartless and glorifies an entity that’s using humans for profit. It’s only right that people hear both sides of a vaccine story—yours, which confuses them, and mine, which is told through the eyes of a former vaccinator who now provides round-the-clock care to a child who was severely affected by vaccines.

By Cathy Jameson

Several friends asked me if I’d seen the emails yet…you know, “The Emails”.  I actually haven’t.  Sitting here Friday evening typing this post, I still haven’t read Dr. Fauci’s emails that so many are talking about.  I will make a point to carve out time to look at what’s been discovered.  I have a feeling that what I learn will not shock me though.  Fauci hasn’t been looking out for the people very well.  He hasn’t been completely honest in the past about other important topics either, including vaccines. 

https://www.c-span.org/video/?c4782570/user-clip-measles-vaccine-encephalitis 

Just reading the headlines about The Emails has left me speechless.  Since so many others are able to chime and across many platforms, I’m posting their words instead.

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Tucker Carlson’s commentary has been spot on from the beginning of the pandemic.  He gets straight to the point with solid references, especially when he’s talking about Dr. Fauci.  Carlson has revealed so much and wants the truth out there.  I appreciate every word of this recent clip, including when Carlson says, “Watch Fauci lie.”   

https://www.youtube.com/watch?v=yp6btJhS66c

Investigative journalist, Sharyl Attkisson, has also kept the public in the know.  In a report that came out before The Emails surfaced, she shared that scientists have been afraid to step forward.  “The scientists I talked to don’t want to be quoted by name for fear of repercussions in today’s politically-charged environment.”  What an awful predicament!  To those who are not afraid, thank you.  You’re honesty is noted.

By  Cathy Jameson

It’s very rare that someone calls the house phone.  It’s even rarer for someone to call the house phone and ask for Ronan.  When those calls for my son who has severe autism do come in, I am immediately apprehensive.  That feeling came over me last week when a young woman rang the house phone and asked to speak to Ronan.  Quickly, I thought of several options.  I could…

1--toy with her,

“Ronan?  You wanna to talk to him?  Ok, hold on…” 

Hey, Rone. Come here, bud.  You got a phone call.

2--be rude to her,

“Are you serious?  He can’t talk.  Who is this anyway?!”

3--or be polite to her.

“Oh, hey.  Yeah, Ronan is nonverbal.  But I’m his Mom.  Can I help you with something?”

I chose option 3. 

I didn’t recognize the voice but had an idea of why this person was calling.  She said she was trying to get a hold of Ronan to remind him of an upcoming appointment.  After I shared that Ronan couldn’t speak, I could hear her typing in the background.  I assumed that she was adding a note to his profile: patient unable to talk.  When she came back on the line, she shared that the appointment would be at a clinic he’s already been to, but Ronan would be seeing a new provider.  She wanted to know if he, or now I, wanted to keep that appointment.  I said, yes, thank you.  The young woman confirmed everything and said that the doctor will look forward to seeing us both on Tuesday afternoon.

Not until well after I hung up did I realize that I didn’t have to answer the usual hundreds of COVID19-related questions I’ve had to answer before previous appointments.  Those questions have been part of life for quite some time:  Are you sick?  Do you have a fever?  Chills?  Cough?  Sore throat?  Have you been diagnosed with COVID19 in the last 2 weeks?  Have you come in contact with a person who tested positive for COVID19 in the last 2 weeks?  It was nice to have a shorter conversation and one that reminded me of easier days. 

When we arrived to the clinic, Ronan did not want to go in.  That’s not surprising and can cause some delay.  He likes his caregivers, especially the ones he is used to seeing.  But he’s never a big fan of going into these sorts of places.  It sometimes takes loads of encouragement to get him out of the car and then for him to walk through the door.  This time, it took some extra effort, but once he got over the threshold, he knew the expectations – check in at the front desk, wait for his name to be called, then go to the exam room.  After finally walking in, he waited perfectly in the waiting room before he was called back. 

A nurse opened the door and said, “Ronan?  Hi, come with me.  I’m going to take you to the room.”  Reaching for my hand, Ronan and I stood up together and followed the nurse.  I’m so glad that no matter which clinic we’re in, Ronan has that part of the routine down.