by Cathy Jameson

I’ve scaled back on posting on my personal social media accounts for about a year now.  Being online on those platforms isn’t as fun as it used to be.  When I joined them, they were a place to share things with close friends and family.  Over the years, the platforms became more than that.  A place to connect with other advocates, to share resources, and to keep updated with legislation and politics, those websites were a lifeline for me.  Available 24 hours every day, I loved being connected to so many people across the world. 

Lots has changed since I joined Facebook back in the mid-2000s.  The games and apps, like the Flair Board, were simple yet creative ways to pass the time.  Over time, I saw the platform turn into an interactive and useful message board.  People became more involved and invested in their online voice.  Groups, communities and followings shaped what I did both on and offline.  Connecting people from so many places, Facebook, Instagram and Twitter were truly a great concept.  But the more people spoke up about their passions, the more silenced their voices were. 

I don’t recall exactly when, but the powers that be didn’t like what they were seeing.  That’s when the Fact Checkers showed up. 

Fact checkers took the fun out of social media, including on FB.  When they came out in full force, I’d still want to share funny things my kids say on my page and post silly memes hoping to make people laugh.  But long gone is the desire to use my account as a means to share personal stories or to use it as a virtual soapbox like I had been doing for years. 

Not that I shared anything inaccurate, but I got a warning just a few weeks ago from Facebook that a link I’d posted wasn’t completely true (according to their standards).  I supposedly had taken some news out of context.  In reality, what I’d shared didn’t fit their agenda.  That wasn’t the first time I’d been told to watch what I posted.  As the creator of our Age of Autism Pinterest page, I was permanently banned from using that platform in 2019. I was never a big fan of their setup, but their message was very clear–posting vaccine truths will get you deleted.  

In the beginning on other sites, people would just get a slap on the wrist like the one I had received on FB.  An opaque overlay would cover the information a user shared.  Some Fact Checkers went a step further and added several links at the bottom of the opaque overlay that countered the poster’s original message. 

Rarely would I ever click on the links when I saw them on my friends’ posts.  It’s a fact that for every study or article a friend might share, another study or article could say the exact opposite.  Those policing social media platforms still wished we’d stop thinking for ourselves entirely and stepped up their game.  Besides making it harder to read what others shared, people would lose the ability to log in for a certain amount of time.  I’ve yet to be put in it, but friends have done 1-, 3-, 7- and even 30-day stints in FB jail.  Others get the boot completely like what happened to us on Pinterest.  Without warning, accounts and pages are deleted altogether.  Some people are calling it quits themselves.  No longer willing to play the cat-and-mouse game, they want nothing to do with the censorship the social media giants are encouraging. 

We’ve not encountered that anywhere else yet, but other platforms, like Twitter, also like to contain the narrative.  They told AofA to hush up temporarily for a post written by Ginger Taylor.

By Cathy Jameson

“Be curious and ask questions. Don’t just accept things as they are. Scientists always ask ‘why’ and ‘how.’ And…read as many books and magazines as you can about science.”

That advice was found in a textbook written for students in elementary school.  Had it been written as a stand-alone paragraph, I’d have thoroughly appreciated the quote.  But this advice was at the end of a one-page write up in a children’s Science textbook that promoted vaccines.  Had the authors of the book, or the doctor himself, an immunologist, added that some vaccines can cause some problems for some people, I’d have not been disappointed. 

But I was.  

I honestly shouldn’t have been, especially since this sentence was also included in that one-page write up:  “Many immunologists hope that vaccines—medicines usually given through a shot—will prevent people from getting sick.”  That was my hope, too, as a young mother.  Vaccines are the hope for a lot of young mothers. 

Until they’re not. 

The desire, to help our children be healthy, is strong.  So is putting faith into vaccines.  When you think you are doing the right thing for your child, like keeping them up-to-date on shots, all sorts of hope happens.  It’s only after a vaccine reaction occurs can that hope fade away.  Sometimes, depending on the severity of the injury, it will take time for that to happen.  Eventually, all hope may completely disappear.  When I finally realized what was happening to my own child, which was only after I thought to ask ‘why’ and ‘how’ like that immunologist encourages young students to do, it was too late. 

My son’s health was far worse post-vaccination. 

Vaccine reactions are not talked about like they should be.  Why they happen and how to prevent them are topics officials wish that you just not ask.  If you dare, you could be silenced.  We have been. So have others. More surely will be.  

By Cathy Jameson

Extra appointments and errands had me out of the house a little bit longer than usual last week.  I didn’t mind the driving around, especially since I could listen to the radio uninterrupted while I was out.  Since it was just me in the car, I had no one asking me to change the station, to turn on a movie, or to turn a movie off.  I was glad for the chance to catch up on some news and follow-up analysis on a new fave XM station, 125.  But some days, with just how much is going on out there in the world, I just needed my music. 

This song came on a few times when I’d had enough of listening to talk radio.  It wasn’t just on my other go-to XM stations either.  I heard it on several stations at least once on one of the local ones.  I knew which artist was singing, but in the 4 or 5 times I’d heard it, I never caught the title. 

It’s quite the song!

The title is perfect.  

And the lyrics? 

They are so very good.

Is there anybody out there payin’ attention?

Is there anybody out there payin’ attention?

Is there anybody out there payin’ attention?

Is there anybody out there payin’ attention?

grandson asks that 4 times in a row at one point.  How many times have asked I myself that over and over again this last year?  Too many times!  I don’t agree with some of his politics, but I do echo his question, “…is anybody…payin’ attention?”  I’ve been asking myself that since January of 2020.   

Each year, like clockwork, several of us in this community wait with bated breath as to what the “new virus” of the year would be.  Like Ebola, like zika, like the measles.  It was no coincidence that this meme was making the rounds this week exactly one year ago. 

This year, everyone is ‘freaking’ out about the vaccine for the new virus.  Their screaming isn’t in retaliation because a vaccine was fast-tracked or that it has no long-term studies.  They’re freaking out because they want a liability-free countermeasure that they feel is not being distributed fast enough.  Having “gotten my hands dirty” knowing the ins and outs of how vaccines work (and don’t work), I’m walking around dazed listening to the public.  They want the newest vaccines that comes with, some consider, the greatest risk.

Never in the last 16 years of reading about vaccines have I ever watched people rush themselves to get tested for an illness they’re showing no signs of.  And never have I ever seen so many people so willing to roll up their sleeves for a medical product that is so brand new, some questions about it can’t be answered:   

Will either vaccine prevent COVID19?  Maybe.  But maybe not.

By Cathy Jameson

This memory is from an unfortunate event that happened back in 2015.  Meltdowns aren’t ancient history for us yet, which is why we continue to work hard to give Ronan the language he needs.  Communication is key.  It is key for so many reasons.

I shared some major gains that Ronan's been making with some people last weekend.  I might've jinxed myself for sharing all that awesome though.  What happened on Monday was not awesome.  

As we left the Big Box store that Ronan's been able to navigate in and out of like a boss lately, he melted.  Oh, how that child melted down.  Maybe it was because he didn't fall asleep until after 10:30 pm the night before.  Maybe it was because I had to wake him up early on a day that he normally gets to sleep in.  Maybe it was because I had to race him and his little sisters to the girls' school because I'd overslept and the girls missed the carpool.  Maybe it was because I later took him to a store he had no interest in going.  Maybe it was because we left the store through a different door.  Maybe it was because he didn't get the special treat he's been offered during other recent shopping trips.  Maybe it was because of all of those reasons.  

Maybe it was because of none of those reasons.  

Whatever the reason, Ronan had a meltdown that lasted for 33 minutes - ten of which were in the parking lot in front of a lot of other shoppers.  The other 23 minutes were in the car.  Those 23 minutes were not any easier.  

That's when things got a little carried away.  

Ronan was still not cooperating once he was in the car with me or with his therapists, so we continued to wait things out.  After several failed attempts at getting Ronan to communicate, I brainstormed another idea.  At this point, I was in the backseat trying to encourage and redirect Ronan to sit safely in his car seat.  He was in the car but not seated yet.  Since Ronan loves his movies so much, I thought if we could get him to request a movie, we could turn his behavior around.  But then I thought of something better.  Maybe if I turned on some music first, something he’s highly motivated by, he'd asked for me to change it.  I thought before I changed the song, I'd be able to encourage Ronan to sit.  If I could get him safely in the car seat, I could buckle him up.  If I could buckle him up, we could get going.  If we could get going, I could turn on his movie.  That sounded simple enough, but because the situation had already gone south, and quickly, I wasn't sure my plan would work. 

It didn't.  

I turned on a CD.  It’s a favorite of mine and one that I thought for sure that Ronan would immediately ask me (through sign language) to "change".  

He didn't.  

Instead of signing change or asking for a movie, Ronan relaxed.  Still firmly planted on the floorboard of the car, he quieted down, he leaned into me, and then, he actually enjoyed the music!

By Cathy Jameson

I took Ronan's little sister to the hospital last week for two follow-up appointments.  [Before I go further, know that she’s fine, has no worrisome conditions like her brother has, and is one of the healthiest in our family.  That said, we sometimes go to the hospital for appointments because it’s easier to see the doctor there than at the smaller satellite clinic.]  The first appointment of the day was at 9am.  The second one wasn’t until 1pm.  Planning on staying on the hospital grounds for lunch, we both looked forward to lunch at the cafeteria.  Some people don’t like hospital food, but this group offers great meals, including ones that are made with clean ingredients.  Plus, who doesn’t love a lunch out and some mommy-daughter time? 

So, on Tuesday, we got ourselves to the hospital and got ready for the long day ahead.  Before we arrived, I’d been tipped off that things had changed again because of COVID.  A phone call the day before the appointments confirmed that things were still pretty intense there, “Mrs. Jameson, when you come to the parking garage, you’ll receive a card.  On it is a phone number.  After you park, call it.  The person answering will let you know when you can walk into the building.  Once you’re at the entrance, you’ll need to be mask up, get your temperature taken, and sanitize your hands.  Then, you will be asked to go directly to the clinic.  You’ll both receive a sticker to wear that shows you’ve been cleared to enter the building.” 

I’m used to that sort of instruction now having taken Ronan to several doctor’s appointments there, but if I had no idea what was going on in the world?  Those instructions sound like what you see in movies during some covert ops when someone breaks into a secret entrance of a classified area:  Use the password we give you.  Don’t draw attention to yourself.  Don’t look anyone in the eye.  Go in quickly.  Go in quietly.  Do the job, and get out safely. 

The young receptionist continued, “Now, before your visit, I need to ask you a few questions.  Have you or your daughter have

The Virus Formerly Known as Corona

The Virus?”

The Virus. 

I could toy with this young person and ask, “Which one?”

I could be super annoying, and say, “Yes,” because we’ve certainly come in contact with viruses on a daily basis. 

Or I could be compliant, not make any waves, and just say No.

I opted to keep things simple while on the phone and told her we did not.  No need to ruffle feathers before we even step foot into the hospital.  She then rattled off the extensive list of symptoms of The Virus asking if either of us currently have any of the following symptoms or had them in the past 48 hours:  Do you have a fever, chills, cough, shortness of breath or difficulty breathing?  Do you have fatigue, muscle or body aches, or a headache?  Have you experienced a new loss of taste or smell?  Do you have a sore throat, congestion or runny nose, nausea or vomiting, or diarrhea?  And finally, within the past 14 days, have you been in close physical contact with anyone who is known to have laboratory-confirmed COVID-19, or with anyone who has any symptoms consistent with COVID-19?

By Cathy Jameson

Taking a child to the hospital can be a little nerve wracking.  Taking a special needs child with medical complications during life with COVID to the hospital…well, the frustration level is a wee bit higher.  Our hands are tied this time as we wait for medical care to catch to the massive delays caused by restrictions put in place last year.  I know it should all work out, but I’m going to reread this old story again before I take Ronan to his next procedure, which is scheduled next month. 

I’ll need the motivation. 

That time, from start to finish, everything turned out well.  This time, it’s a new team of providers working with us.  They know where I stand on certain medical topics.  They know that I trust them and respect them.  Most importantly, they know that beyond a shadow of a doubt, that yes, I do know my son best.

---

Ronan has a procedure coming up this week.  He has another one scheduled in two weeks, too.  I'm getting lots of phone calls about those appointments as they get closer.  The nurse, the doctor, another doctor, a patient advocate, and now another nurse - quite a few people, including me, are checking and double checking on things.  That involves making sure that all of the paperwork is done, that all of the information is current, and that all of us are on the same page. 

I've experienced being on the same page with other providers.  It's a good feeling and actually quite comforting to know that someone else understands just how complicated Ronan's case is.  I'm grateful that they quickly include me in discussions and in pre-op work ups.  In the past, providers have told me that they appreciate what I have to offer.  They want to hear my thoughts, and they make sure to include me and update me as much as possible.  That makes appointments run smoother, and it makes treatment plans more successful.

By Cathy Jameson

The song Ronan shared from this memory came on the radio last week.  Besides remembering the connection my non-verbal son made, I instantly remembered the sadness that came over me the day that Dolores O’Riordan died.  A long-time fan of The Cranberries, I was devastated.  

This bands’ music was part of my life long before autism and vaccine injury rocked my world.  The day O’Riordan died happened to occur during a time we were struggling to control seizures.  

Already crying because of how helpless I felt as I tried to help Ronan, I cried a bit more thinking about the tragedy of losing her voice.  I’m grateful that it still has a way of creeping into not-so-random moments, like last week and in the memory I’ve shared below.  


Sometimes, I can't believe the music selections that Ronan chooses.  Other times, I realize that the songs he picks are spot on.  I shared one of those amazing discoveries years ago. The one I'm sharing today was, I thought, totally random.  Thinking that it was so totally random, I'd shared the link with some friends:

"Ronan's choice of songs tonight.  Little dude's music is amazing."  

By Cathy Jameson

I shared this story several years ago with family and friends.  I thought of it again as I vacuumed that highly-trafficked rug area last week.  It’s due for a deep clean once more.  I’d love to make an appointment with this company, just to have the chance to catch up with the carpet cleaning guy. 

--

With as much traffic our floors and carpets get, I've often wondered if it would be wise to purchase a steam cleaner. During Ronan's de-robing phase a few weeks ago, I came to a conclusion that YES, we do need our own steam cleaner.

During that phase, I scrubbed Ronan's bedroom carpet daily.  The cleaner I got his carpet, the dingier other carpeting in the house started to look.  While trying to recall the last time we had them professionally cleaned, I remembered a conversation that the carpet cleaner guy and I had.  

We were talking about our kids, the summer ahead, and fun family things to do in town.  Halfway through the conversation, Ronan walked into the room where we were talking.  Boy was he was a sight!  Ronan had tried to put on a bathing suit over his shorts, two pair of swim goggles, and swim floaties--both of them on one arm.  

The carpet cleaner guy stopped mid-sentence.  Ronan, taking no notice of him, stood in front of him and then stared at me.  Signing 'swim, water, boat', his way of saying that he wants to go to the pool, Ronan reached for my hand.  I offered it to him but didn't leap into action.  Tugging on my hand, Ronan looked puzzled.  It would be at least another hour before the carpet cleaning crew was done.  That, and because it was raining, had us staying home with no plans to go to the pool that day at all.  

But Ronan didn't care.  

He wanted to go swimming.  

Now!  

What followed wasn't pretty.

By Cathy Jameson

Vice President Mike Pence

Senate Majority Leader Mitch McConnell

House Speaker Nancy Pelosi 

Senator Mitt Romney

All of them took center stage last week with a COVID-19 vaccine.  Quite a few others have put their names and faces out there including this nurse. 

She isn’t a well-known leader or influencer but certainly played a role in the latest COVID19 vaccine public relations campaign.  Caught on camera,  those watching saw the nurse manager hit the deck several minutes after receiving the vaccine.  

While I appreciate that the news is finally covering all the facts, including that vaccines have serious side effects, I’ll never advocate for the administration of vaccinations to be shown on TV.  What other medical procedure gets broadcasted on live television like vaccines do?  None that I can think of.  I know that airing the event with famous people and front-line workers is all part of the dog and pony show.  Financial backers think it will help reduce vaccine “hesitancy”. 

Vaccine hesitancy certainly exists, but so does not wanting to go to other types of medical appointments.  I know no man who looks forward to a yearly check-up.  I know no woman who excitedly counts down the days for her next breast or pelvic exam.  Can you imagine if we got to see those procedures or other private exams on TV – like Pence’s prostate exam or Pelosi getting a mammogram? 

by Cathy Jameson

Thomas, called Didymus, one of the Twelve, was not with them when Jesus came. So the other disciples said to him, “We have seen the Lord.” But he said to them, “Unless I see the mark of the nails in his hands and put my finger into the nailmarks and put my hand into his side, I will not believe.” John 20:24-25

Thomas, one of the 12 apostles is also referred to as Doubting Thomas.  You can see in that scripture passage above how he earned that nickname.  Not present when Jesus found the apostles hiding in the upper room, Thomas found it hard to believe that the Lord had tracked them down.  I hadn't thought about this passage in quite some time, but the latest vaccine news has me thinking more of Thomas and how his doubting attitude kept him from believing what the others were telling him. 

Not until later, when Jesus was face-to-face with Thomas, would Thomas believe that Christ had actually risen.  I imagine that realization was quite profound.  I don’t think they’d have thrown a party, remember – they were still in hiding, but I also imagine that the mood behind their locked doors was somewhat celebratory.  

I, like Thomas, have doubted some facts myself.  Vaccine injury?  COME ON!  Surely that's a made up thing.  I’d thought that because for the longest time I'd only be told that vaccines were safe and effective.  

They were necessary.  

They were there to help my child.  

They'd keep him healthy.  

To be hurt by one?  No way!  

I believe that a majority of the public, despite the US establishing a program to compensate those with vaccine injuries, still believes that, too.  The latest headlines are finally reporting another story though.  Severe vaccine side effects do exist!  

And it’s nothing celebrate.   

https://www.childrensliteratureassembly.org/

By Cathy Jameson

Businesses have closed. 

Therapies have changed.  

Schools have shut down.  

Teaching and learning has gone online.  

If you’d told me we’d be living like this a year ago I would’ve balked and said that 2020 sounded like a nightmare.  We don’t have too many nightmare stories here on AofA.  But they exist.  When Managing Editor Kim finds them, she’ll post them.  Never easy to read, it’s important that she continues to share them.  They are a glaring reality families in our community face.  It wasn’t until this week that I looked back and realized that our family has recently experienced a few of them ourselves thanks to COVID19.  

When we were asked to stay home for 2 weeks to help flatten the curve, I wasn’t worried about my family.  My heart immediately went out to other special needs families though.  I hoped that they would be okay and that the temporary break in their daily routine wouldn’t cause too much disruption.  My hopefully-ever-after self personally didn’t mind the break and actually welcomed putting life outside our house on hold for a moment.  I love random stay-at-home days!  Plus, Ronan had supports in place that would not be interrupted, so we could continue life as we knew it from home.  

For the most part, that worked.  

When the country didn’t open the following month, I took it in stride that some parts of life were going to change a tad.  It wasn’t too terrible, and I dealt with minor obstacles like I would’ve normally.  Not until we faced massive delays in treating a medical issue for Ronan did my usually optimistic outlook take a hit.  

Ronan had been on the schedule for a surgery in March.  It had been on the books prior to the lockdown and would actually be two surgeries coordinated with two medical teams.  At the time, we were told he was top of the list, a priority patient, one who absolutely needed to be seen as soon as possible.  He’d even moved other patients down the list because of the severity of his condition.  Imagine my shock and concern when his team called and said that the procedures were canceled with no word on when they’d be able to reschedule the OR.  I tried everything to get him back on the books, but our hands were tied.  The providers tried everything they could, too, but their hands were also tied.  COVID19 had become the hospital’s priority, and Ronan’s case was now deemed an elective procedure.  His, and other “non-emergency” cases, would not be considered.  No exceptions. 

Ronan would eventually be put back on the schedule, but he wouldn’t have those procedures until July. 

Ronan still deals with that medical issue, but we are able to manage it better and from home.  I’m glad for that.  But the longer life has not returned to what it once was, other problems have come up.  And we’re once again facing the fact that Ronan’s prescribed medically-necessary procedures are taking a back seat.  Other patients, those who also had to wait months to be seen, are now taking priority.  If I had to guess, not all of them are related to COVID19 the illness directly, but if there’s anything to blame it’s COVID19.  The backlog created by it has interrupted getting routine follow-ups done, completing in-office procedures, and yearly evaluations performed.  Those, along with COVID19 restrictions, are keeping doctors and nurses hopping.  

I can’t imagine the stress they are under.  

As much as I hate to add to their stress, I will do just that.  I have to advocate for my son and his needs.  If that means being a nag when I call for updates, I’ll be a nag.  If it means asking for more advice, I’ll ask for it.  I’d rather be able to punch COVID19 right in the neck than be a jerk to the professionals helping me and my son.  But punching COVID19 in the neck is obviously not possible, so while we live this on-going nightmare I’ll stick to what I am able to do.  

I’ll keep Ronan as healthy, happy, and as safe as I have. 

Note:  It's not often we run a "Best of" from Cathy.  She has the weekend off with her beautiful family. Who better to share her thoughts on gratitude, than she? This post is from just last year. But the way I see it, none of us has a functioning memory this far into 2020, so let's go back to 2019, when we were blissfully unaware of what the New Year would bring.

###

By Cathy Jameson

A friend of mine shared a slew of positive messages on one of her social media accounts. It took me a few days to realize she was posting one per day during the month of October, but that was because I took a short social media break. Jumping offline is always good for the mind. It can be very good for the soul also.

Once I logged back in and saw the upbeat messages again, I looked forward to seeing the daily suggestions she shared. Topics like keeping hopeful, setting practical goals, and finding joy every day were peppered on her page. I wasn’t always in a good mood when I jumped online, but after seeing those short, inspiring messages, I would take a few minutes to think about something positive. Be it something my kids did that made me smile, or thinking about a big step Ronan finally made, I was grateful for the reminder to stop, reflect, and be thankful. As the Thanksgiving holiday approaches this week, I thought it would be a perfect time to share just a few things that I am thankful for, too.

While I’m certainly not grateful for my son’s vaccine injury, I am thankful that I am more educated because of it. I fully admit that I didn’t know enough when my children were younger. A lot of precious time and more was lost during those early years, but I am thankful for what I’ve come to realize. With every realization, I now know better what to do and what not to do.

With everything I’ve experienced – both the good and the bad - I am thankful that I learned how to advocate for my son. The knowledge I’ve gained in the last decade is incredible. It’s more than I ever could have imaged I would have to learn. What I’ve learned has helped not just Ronan but all of my children. While my typical children don’t need the same type of assistance their brother needs, they’ve gained a unique perspective watching me and my husband take care of their brother. Because of what they’ve witnessed and continue to witness as Ronan’s siblings, it’s encouraging to hear my kids become more vocal in class and within their circle of friends about certain topics, like vaccines and the need for exemptions. I’m thankful that they know the truth and are talking about it. They’re advocating for themselves much sooner than I expected them to have to.

I am incredibly grateful for other advocates, too. To those who paved the way before I came on the scene, like Barbara, Kim, Anne, JB, and Ginger, thank you. From the bottom of my weary heart, I would not have known which direction to go had it not been for the brave moms and dads who started the conversation. Thanks to all who keep that convo going. From our old Yahoo! Group days to the several private FB groups that are still going strong, you will have my respect and admiration.

By Cathy Jameson

A few years ago when a blizzard kept us home for days on end, I had lots of extra time to clean out the closets.  From that cleaning spree, I had 2 very large bags and 1 big box of items to donate.  The items may not have been brand new, but they were in good condition and could hopefully serve a purpose for someone else.  

My daughters were not sad to see their things go.  I wasn't either.  The things I was donating to the giveaway pile were a few t-shirts I no longer wore and a pile of books that I knew that I'd never read cover-to-cover.  Only a few of the chapters and topics in the books interested me anyway.  

I'd bought the books one or two at a time at thrift stores over the years hoping to use them for a research project.  Instead of finishing the project, the books sat and sat and sat on one of our bookshelves.  I spied them on that snowy weekend and decided that it was time for them to go back to the thrift store.  I wanted to add a page of my own to each book before they were donated though. 

I’d considered it a missing appendix or sorts.  These books, all of which are meant to educate women during pregnancy or during the first few years of parenting, were missing something:  the whole truth.
  

- In sections regarding autism, there was no hope that autism could be prevented (and treated). 

- In sections describing vaccines, I found no warning that all liability-free vaccines come with risk and that they had side effects (or what to do about those side effects post-vaccination).

- In other sections of these books, when listing the vaccine schedule, information about vaccine exemptions was missing (including that all 50 states offer at least 1 exemption).  

Cathy asks: If you’ve got any advice for parents of teens turning into young adults, what would you share?  A beneficial bathrooming tip?  A sound shopping suggestion?  A clever communication cue? Share something you’ve experienced in the comments below.  Want to just vent instead?  Share that in a comment also.  I love that on the good days we can learn from each other.  I also love that on the bad days we can just be an ear to listen. 

By Cathy Jameson

This was a first: I had to ask a security guard to watch a door for me today.  Ronan and I were about to head home from an appointment, but I needed to use the bathroom.  It would be an almost 2-hour trip for us.  With two cups of coffee in me, there was no way could I make it home without having to stop.  Easily, I could pull over into one of the stores along our route home, but sometimes Ronan doesn’t like to go in stores.  It would be better for both of us if I used the bathroom at the older clinic.  I couldn’t find a family bathroom in the building we were in though.  The only women’s bathroom I knew of had 4 stalls in it.  Usually, I just take Ronan in with me, but this time, I worried.  While short for his age, Ronan’s a teenager now.  He’s not a little boy anymore.  Bringing him into a women’s bathroom in a public place could get us more angry stares than looks of compassion.  

Standing in the hallway needing to make a decision, I saw a young security guard and asked where I might find a family bathroom.  “Oh, you won’t find one in this building yet.”  I said, “That’s going to be a problem – he (pointing to Ronan) needs to come in with me.  I can’t leave him unattended.”  Without hesitating or judging, or wasting any time, the guard said, “Ma’am, there’s a bathroom over here to the left.  Check if anyone is in there.  If it’s empty, go.  I’ll stand at the door make sure no one goes in until you both are out.”  

Speechless, I took Ronan’s hand and walked into the ladies’ room.  I didn’t have to, but I’ve never peed faster than I did that day!  

Washing up, I said to Ronan, "Okay, buddy.  Your turn.  Then we can get on the road.”  As I pushed the bathroom door open, the security guard was standing right outside in the hallway as he said he would.  I smiled and said, “Thank you.  Thank you so much for your help.”  He said I shouldn’t think anything of it.  But I did.  Our kids are growing up.  Many of us moms won’t be able to take our teenage sons into ladies’ bathrooms without being given the stink eye, being questioned, or worse – being stopped from entering.

A broken arm needs a flu shot like a fish needs a bicycle.

By Cathy Jameson

This old memory popped up last week.  I’d written it for friends and family a couple of years ago after an incident that brought us to a walk-in clinic late one Friday evening.  My children have learned a lot from their brother’s vaccine injury.  They’ve picked up a few things when it’s their turn to be the patient.  I pray that they remember each lesson, especially when they have children of their own.

--

You know that the medical system is messed up when an 8-year old wants to leave a doctor's appointment.  

Tonight, my daughter fell and busted up her elbow while playing basketball.  She immediately cried out in pain.  Pain and swelling in her arm increased, so we jetted over to urgent care to have things checked out.  Looking over my shoulder as we checked in, I could feel Izzy grip my arm as I answered some questions.  The "Does the patient need a flu shot and/or a pneumonia shot?" question on the intake form immediately made her skeptical. 

"Mommy,” she whispered to me, “…a flu shot??"  

She knows that this year's flu shot is only 18% effective and that the flu shot was one of the ones that took her brother's voice away all those years ago.  Izzy has nothing nice to say about that shot and hates to even think about it.  She knows that one, and other childhood vaccines, hurt her brother. I don't blame her for not liking it.  I don't care for the flu shot either.  

I replied, "I know honey.  It's a little ridiculous, isn't it?  You don't need a flu shot if you've broken an arm." 

Apparently, the nurse thought we did.  

During the intake when the nurse asked if my daughter needed a flu shot, I answered, "She's all set," and then quickly changed the subject.  Wanting her to stay focused on why we were at the clinic and to get appropriate treatment, I repeated, "So, it's her left arm that's hurt.  She fell right before dinner.  We got a new basketball hoop, and the kids were having so much fun...until this..." I said as I pointed to the swollen elbow making sure the nurse looked at it.  

With pen poised, the nurse finally looked up from the clipboard and stared at Izzy's elbow.  She said, "Oh!”  After a long pause, she said, “Okay."  Glancing back at her papers, she looked at what was next on her list:  height, weight, temperature, blood pressure.  "Let's get her on the scale.”

By Cathy Jameson

I was pulled into an interesting conversation about a week ago.  I wasn’t there for the first part of it, but I could tell that COVID-19 was the subject.  As I got closer to where the two people were talking, the young lady was arguing that we should continue the safety measures that had been set up during the quarantine.  The young man said he couldn’t wait to be done with all of it.  That’s when I was asked, “Mrs. Jameson, do you think we should still be doing temperature checks after Covid is done?” 

“Nope.  I don’t think we should,” I said without hesitating.

Knowing that I had a real opportunity to educate these two young people, I added, “You know we come in contact with lots of other viruses, right?  You have your entire lives.  Why was COVID singled out to be the one we all should be so afraid of this year?  What about the flu virus?” I could see that the young lady hadn’t thought about that yet.  She slowly began to nod her head as I continued, “The flu can be pretty severe for some people.  You hear about that every year, especially this time of year, but life with the flu was nothing like life with COVID.  We didn’t have to wear masks, do any social distancing, close down the country, or do anything like we’ve been forced to do.  So, yeah, I think temperature checks eventually need to stop.  So should the other measures end…”

I let me voice trail off.  

The young man clapped.  He was in agreement with everything I had just said.  The young lady didn’t say it, but I could tell that she could see my point.  Had we continued talking, I think she’d have eventually agreed that some of the safety measures we’re still doing could be phased out, like wearing masks and taking temperatures.  People should certainly continue wearing masks if they feel are protected by them.  They could take their temperature daily if they wanted to also, but not everyone has an average temperature.  Some are lower than the average while others can be typically higher.  Plus, right before corona came into our lives, we learned that that typical 98.6˚ temperature was not so average after all.  To be denied entry to a building based on that reading may be a bit excessive. 

During the conversation I agreed with these two young people that yes, COVID is something we need to take seriously.  But, like other viruses, it’s going to do what viruses do.  Viruses replicate, they lysate (break down the cell’s protein wall), and they spread to other host cells hoping they can continue to replicate.  Over time, viruses can also mutate, all the while seeking new potential hosts. 

Isn’t that exactly what we’re seeing happen right now? 

Besides seeing a virus in action these last nine months, we’re also seeing something else:  fear in motion.

Earlier this year, the public knew very little, if anything at all, about coronaviruses.  As more information was shared, so was fear.  As that ramped up, so did talk of a new vaccine.  That would save us from this novel virus!  Touting it safe and effective before it even hit the production line, some sources still want a rushed and limited safety tested vaccine to be our only hope.

Source: the internet

Like a virus, fear can be replicated as well.  It can jump from one source to another, and so quickly now thanks to technology and social media.  From shutting down entire countries to continuing to restrict people and businesses until a vaccine becomes available, fear has ruled the COVID-19 airways.  It’s too bad because learning moments have been lost, especially for those young people. 

“Would you get the new vaccine, Mrs. Jameson?” one of them asked me.

“Oh, I would never.  I don’t think it would be the right thing for me or my kids to get,” I shared.

Pre-Covid when we could fly, The train to JFK Airport Had travel restriction posters about MEASLES. Goodbye "Friendly Skies."

By Cathy Jameson

With COVID-19 being talked about as much as it has been these last 7 months, other illnesses got the boot from the news cycle.  You couldn’t avoid reading or hearing about the measles from early 2015 through late 2019.  Now, we hear nothing of them.  Oddly enough, the flu is getting a little less airtime, too.  Curious as to why these fell of the media radar, I went to the CDC’s website to see if I’d missed any major news about these two former headline grabbers. 

Instead of solid data like I usually see about the flu, I saw that statistics for the 2019-2020 flu season were not as complete as previous years have been.  Actual numbers were replaced with estimates.

An illness that steals headlines every year from October to April, it's almost as if flu news doesn't matter as much anymore.  When in the history of ever has that ever happened? 

Source:  CDC https://www.cdc.gov/flu/about/burden/2019-2020.html

Never!

So, I kept reading. 

In another document, I was able to find more updated information:

During the 2019-2020 influenza season, CDC estimates that influenza was associated with 38 million illnesses, 18 million medical visits, 405,000 hospitalizations, and 22,000 deaths. Source CDC

I was relieved to see that the deaths associated with the flu were far less than another previous season, the 2017-2018 season.  If you recall, we were told by the media that over 80,000 people had died of the flu!  I’m not sure yet what helped reduce the death toll, but I’ll keep an eye on the data that is being reported. 

Now, for the illness that didn’t make its way into recent major US news cycles like it used to – the measles.  The last time I remember seeing a national news story about them was in January 2020. 

Back then, it had been reported that a college student in Boston had gotten sick with the measles.  Prior to that story, reports of outbreaks peppered the news more frequently and usually during state legislative seasons.  It wouldn’t come out right away, but we’d learn later that these outbreaks would often include vaccinated students or individuals.  Keeping that important fact out of the publics’ eyes was a strategy that helped fuel fear.  It also helped lawmakers pass vaccine mandates that parents’ vehemently opposed. 

Well, according to the CDC’s latest data, measles cases in the United States have dramatically dropped:   As of August 19, 2020, there have been 12 confirmed cases in 7 jurisdictions.

Looking at how many were reported just the year before, that’s the best news ever! Photo Source:  CDC.

by Cathy Jameson

For seven months, the public has been asked to live with an abundance of caution.  That’s included quarantining, keeping socially distant, wearing a face covering, and staying home even if one is not feeling ill.  For businesses, working with an abundance of caution included more restrictions.  It meant closing their doors.  For schools, it meant shutting down campuses and going completely virtual.  At the time, and based on a virus we knew little to nothing about, some of those precautions made sense.  

Seven months later, we’ve gained more knowledge about the virus and which precautions were necessary (and which ones were not).  Daily reminders of how to continue to live with an abundance of caution are still being broadcasting on the airwaves, like the ones I heard on the radio last week: 

Stay home!

If you have to leave home, wear a mask!

When in public, stay six-feet apart!

No matter what, don’t touch your face!

Later, when one has been fast-tracked and approved, I can bank on this added message…

Get your damn vaccine!

Even though the curve has been flattened, we’re being told to live as if it hasn’t.  I’m guessing that’s why the media is keeping that COVID-19 vaccine in their news cycle.  Claiming it’ll be the next best thing to counter the coronavirus, the vaccine is getting more airtime than the flu vaccine usually does. As with that typically ineffective flu shot, and other ones manufactured here in the states, it’ll be a liability-free vaccine the public will be offered.  That liability-free label means that should something go wrong post-vaccination, pharmaceutical companies do not have to claim any responsibility for it, even if the damage done is a result of their product.  

One would hope that those making vaccines would include using an abundance of caution in the process, but they don’t have to do that.  The law protects the vaccine industry, not the people being vaccinated.  And it seems further protection has been granted for any COVID-19 vaccine, too.  Where the manufacturers can throw caution to the wind, the double protection they’ve received for their yet-to-be developed, and minimally-tested, vaccine is red flag enough for me.  I’d be a fool to opt for any of them.  

As time goes by, we’ll certainly learn more about the coronavirus and any long-term effects it may have.  That’ll hopefully include learning about the quarantine precautions we were asked to take, too.  Evidence already shows that some precautions have had detrimental effects, including an increase in mental health issues.  Based on several observations and data, some doctors and researchers have shared that it’s time to open the world up again, even without knowing all there is to know about COVID-19.  Enough is enough. 

By Cathy Jameson

A gal named Alex shared the photo on this post on her social media page yesterday. I wanted to high five her.

Each October to April, that flu shot is pushed on the public.  Some people can opt out of that notoriously ineffective vaccine.  Others are not so fortunate.  Depending on which hospital or facility they work, medical personnel and health care workers are required to get a flu shot.  Personal beliefs are dismissed, and exemptions aren’t offered.  If, and when, medical care workers refuse the vaccine, it could cost them their job.

Nurses have seen some victories while fighting the mask mandates.  But many must wear a mask while working.  That mandate holds true for other medical staff who work directly with a patient.  Masks must stay on until April, even for the physical therapy aide, too, who’s filing paperwork in an office away from patients. 

This year, with as many people already donning masks because of COVID-19, I’m curious if those who refuse the flu shot will run into any trouble in the workplace.  They shouldn’t.  Based on mask protocols they were forced into earlier this year, already having a mask on should be on their side. 

Knowing that personal rights are not the pharmaceutical industry’s top priority, I have a bad feeling that some workers will find themselves in an unpleasant situation despite wearing a mask.  They may still have to fight to keep their job.  It’s a shame because that notoriously ineffective vaccine  that gets hawked all over the place will no doubt be a dud again this year. 

Even if it is not a dud for 2020, college students are now on the flu shot hit list.  University of California Davis welcomed their incoming coeds with mandates.  Students and staff are feeling the heat to comply with the flu shot mandates.  Officials are justifying this community-wide effort by saying that the vaccine is a “safe and effective way to prevent millions of illnesses and thousands of related medical visits every year.”  Other states, like Massachusetts and New Jersey, are gearing up to require flu vaccines for all students and at daycare centers, too.  Why, when the CDC claimed in August that “Cloth face coverings are one of the most powerful weapons we have to slow and stop the spread of the virus – particularly when used universally within a community setting.  All Americans have a responsibility to protect themselves, their families, and their communities.”  Granted, they were talking about COVID-19 in that statement, but did the CDC just contradict themselves?

By Cathy Jameson

I popped onto Facebook late one Friday afternoon.  Having had a very busy morning, I just wanted to relax and read and catch up on what my friends were talking about for a few minutes.  I sat down next to Ronan, who was also taking a break and playing on the Wii, and scrolled through my news feed.  Since I had less than an hour before I had to jet out again, it would be a quick peek.  

I had just about had my "fix" and was about to log out when I told myself just a few more scrolls....a couple more status updates to read...and I'll be all done...  That’s when I saw a request.  It was a short post and one I couldn’t ignore.  My friend was looking for other moms for assistance.  She hadn’t shared much, but I knew right away it was no ordinary request. 

Our community added a new member.  

A young mom.  

Her child was recently vaccine injured.

Trying to do things on her own, she knew that it was time to ask others for help.  Could one of us moms help?  Please?

I could.  

Having been that new mom before, I immediately contacted my friend who posted the request.  Hey, I'm here.  What do you need?  What does the new mom need?  Is it resources?  A link?  The name of a doctor?  You name it, I'm ready to help.

As quickly as I contacted my friend, she connected me with the new mom.  

Hello, I'm Cathy, mom to a vaccine injured kiddo.  I've been at this a long time.  I'm sorry to have found you, but I'm happy to be here to help you.  Tell me what you need.  If I can't help personally, I'll do my best connect you with someone who can.  

By Cathy Jameson

Someone asked me recently how Ronan was doing.  I shared that he’s doing well and that he’s happy.  I also shared that he’s stayed healthy this whole time but added that he’s lost some skills during the quarantine.  We’d stayed home for so long not going anywhere, so now he doesn’t like to go out.  If he can manage to get in the car, he later doesn’t want to get out of the car.  Nothing seems to entice him to want to go out, not even a lunch out after an errand or therapy. 

When places started to reopen, I tried to bring Ronan with me.  It was no place new we were going but to the usual stores.  He refused to go in.  While sharing that with the person who asked me how Ronan was doing, I was reminded of the story below.  That event happened years ago.  Things got better back then the more we practiced going out. 

I’d love to reteach Ronan how to be in public again, but he isn’t ready for that right now.  Once things go back to normal, we’ll make time to get Ronan in and out of stores.  We’ll take him out to restaurants again.  We’ll have him join us on the sidelines at sporting events, too.  For now, he’d rather be hunkered down here at home.  It’s where he feels safest.  It’s where he’s happiest.  Home.  It really is the best place to be. 

----

"Sometimes you wonder if this fight is worthwhile..."

While that lyric comes from more of a romantic-y 80s song, think of that particular line in the form of a message from Ronan to me.  I heard it yesterday being blasted from someone else's car in the Walmart parking lot.  It played as Ronan was desperately sending a message:  he was communicating to me that he did NOT want to go into Walmart.   

It was supposed to be a fun shopping trip.  I didn't need to get anything, but we were going so Ronan could practice shopping.  We haven't had much luck shopping at Walmart lately.  He can go in and out of other stores with no problem, but I'm not sure why he struggles with Walmart.  I don't know if it's the bright lights, the high ceiling, the constant noise, or the many shoppers.  I wonder, too, his legs hurt or if he doesn't think he'll have the energy.  But it's become quite difficult for Ronan to even get out of the car let alone walk into the place successfully.  Whatever the struggle, we were face-to-face with it again yesterday.  

Every time I tried to unbuckle Ronan, he blocked my hands.

Who remembers Teddy Ruxpin?

By Cathy Jameson

A few years ago we added a toddler-friendly gizmo to the car seat Ronan was using.  It's a plush strap cover that has a bear head on it.  I hated to have to add the strap cover, but with how Ronan wiggled in his car seat, it was an extra layer of soft fabric over the thin seat belt material.

Let's just say that Ronan didn’t love it.  Besides it being something new for him to get used to, Ronan especially didn't love the bear head that was sewn on the strap.  After he tried to yank it off several times, I cut it off and brought it inside to the kitchen.

The same day that I put the strap cover on Ronan's car seat was the same day that I was asked a slew of questions about my kids' health.  It was a friendly conversation and also third one I'd had on the topic in less than a week.  During the three conversations, I was asked my thoughts about vaccines.  Funny that so many of the conversations I have lead back to that subject.  

I am happy to be a source of information, but it made me sad.  These people, who were each well-educated experts in their field, were concerned about diseases but confused about vaccines.  As knowledgeable as they were about other topics, they lacked enough information to be able to come to a solid decision about what to do.  I could hear their concern in their voices and in the questions they did not ask their doctor but instead asked me.  Their doctors said, 'Here, your child needs this shot.  Get it.' 

But their doctor didn't stick around to talk about the vaccine excipients.  

They didn't explain the risks of vaccination or share what side effects to look for.  

They didn't offer advice should an adverse reaction occur. 

The longer our conversations went, the more I realized how very little their doctors did to fully inform their patients.  Some people prefer to blindly trust what they are told.  Remember, I was that person at one time, too.  But I think if someone is being asked to be a partner in a medical decision, they must be presented with a lot more information than what each of these three people had been offered.  Because some patients are not being treated as partners, some facts about vaccines bear repeating.  

Happy to repeat that information no matter who reaches out to me for help, I like NVIC’s Ask 8. A conversation starter, I've suggested people ask their provider that list of questions when vaccines are first brought up.  Of course many more links, books, and websites exist and can be read, studied, and cited.  I thought this next list, which I happened to stumble upon after that third vaccine conversation that one week, was very thorough.  

From Natural Immunity Community:  

Question to ask your Pediatrician before you allow them to vaccinate your healthy newborn.
__________

QUESTIONS TO ASK YOUR DOCTOR ABOUT VACCINATION.

Can you show me any studies regarding infant vaccines being tested directly on infants, and comparing the observations to non-vaccinated infants? There are none, those studies have never been done.

Can you show me any studies regarding childhood vaccines being tested directly on children, and comparing the observations to non-vaccinated children? There are none, those studies have never been done.

By  Cathy Jameson

We’ve been told that a severe adverse event has occurred during AstraZeneca’s COVID-19 vaccine trial. Not much has been shared yet about what the transverse-myelitis injury entails except that the trial has been halted and that an investigation is underway. You won’t find that kind of quick response when an individual reacts negatively to a vaccine that's already on the market. In fact, it won’t make the sort of news that AstraZeneca is getting at all. People are lucky if their doctor believes them let alone sees them write a press release about it.

When vaccine injuries happen with FDA-approved, liability-free vaccines, Americans are out of luck. That’s because:

- vaccines come with no warranty

- consumers have the right to get vaccines, but they have no recourse when a vaccine fails or causes injury or death

- documented side effects and adverse events, including death, are listed on package inserts of vaccines produced, sold, and administered in the United States, but

- pharmaceutical companies,  and those who administer their products, aren’t held legally responsible for vaccine products or what happens after vaccines have been administered, and because

- pharmaceutical companies are the priority, never the consumers.

Consumers may file a claim. They may do that anytime they suspect an injury and if they can prove that one of the following events has happened.

Below is a BEST OF from Cathy, from Labor Day 2015. What a difference 5 years makes. What does your child's school look like this year? In person? Distance? Hybrid. My Bella is in her last two years of transition, and so far, it looks a LOT like early intervention. We have an OT coming to the house to implement IEP services on Thursday. Wish her luck. I've been at this a very long time, and my patience is "wafer thin." Like many of you, I've been full time autism parent, full time teacher, full time OT, full time speech, full time so full I could barf time everything. Oh, yeah, and work too.  3 labors might have been easier! At least shorter.  Hope you get a break this weekend, friends.  KR

By Cathy Jameson

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

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

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

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

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

By Cathy Jameson

Some time ago, one of my old posts and accompanying image (below) popped up in my FB memories.  It had me remembering the early days, the early worries, and the early choices I'd made, ones I now wish that I hadn't.  

I know too much, so much but then on some days, not enough. 

That's why I still ask questions.  That's why I still read as much as I do.  That's why I still reach out to people I trust to lead me on the right path.  Who are those people?  They are other parents.  When I need answers about autism, seizure, and mito-related concerns, I don't tend to run to medical people first.  I go straight to the parents.  

That habit goes back many years.  It started when I needed help at the beginning of our journey.  Parents set me straight then.  Parents set me straight now.  They are the ones actively researching.  They are the ones sharing ideas, reporting on the latest research and sharing results of their child’s therapies - and they do so with no strings attached.  

Parents weren't clueless like some of our son’s doctors had been.  Not only that, when another parent's child got better, because some kids do recover from autism, these people didn't clock out.  They didn't leave the community.  They stuck around and continued to help!

I've said it before, and I'll say it again.  I'd be lost without the moms and dads I've met in this community.  I wouldn't have learned what I needed to...

I know about vaccines, and autism, and special education.  I’ve read the history behind vaccines and understand that autism can be a result of vaccines. I hear about the greed, the cover-ups and the on-going deception. I know more now than I have ever known before. I belong to a community because of that knowledge. A community was formed because of awful realizations and because of greed that intruded in our children’s lives… Parents should have been able to trust their doctor, their government, but no. Instead of trust, they got betrayal.  Formed for parents like me who also felt that stab of betrayal, this community stands out speaking up against the atrocities. 

They also offer something else that’s equally important: help, hope and the truth.

By Cathy Jameson

I had an incredibly busy week and had no time to write a new post.  Today’s story comes from an old journal entry of mine.  It’s been edited a tad for our AofA readers today:

--

February 4^th - This Blows

...While I try to be upbeat and hopeful, there are days I just can't keep smiling.  Ronan looks so normal at first glance.  Strangers are caught off guard when he does something unusual or has a meltdown.  Those encounters can be painful, so I either try to explain things or quickly move away from watchful eyes.

On those bad days, I sometimes just want to blow off my responsibilities.  I would never do that.  I have five kids, and they all need me in some special way.  Ronan is my most needy most days and always gets my full attention.  His complicated medical issues and cognitive delays have us constantly on the go to get him to his therapies and appointments.  My life includes weeks that are tornado-like and should have high alert statuses to warn others what to expect...

--

That old memory crossed my path today.  I’d appropriately titled the entry This Blows.  Written during what looks like was an awful week over 10 years ago, I recently had a similar week full of struggles and emotions.  Before things smoothed out, I told myself the same thing I’d said a decade ago:  Things really stink.  But you'll pick yourself back up again, Cat.  You’ll see.  I expected it to be a good week, but the week I wrote that was THE PITS.  Each day, my well-thought out plans were completely destroyed.  Then Ronan had dozens of seizures.  The night those came on was the worst, and the following day was no better.  Walking around with more worry than with happiness, I asked myself how do I keep smiling when there's nothing to smile about.  

...while most of Ronan's days are full of struggle just to do the simple things - like getting in his chair without falling over, or scooping his food without it spilling out of the spoon - Ronan is victorious.  Each day he faces more challenges than I will ever know.  Each day he teaches me to learn more and to do better, too.  I may want to blow things off some days, but that little hero wrapped up in a kid’s body pushes me along.  That’s when I try to remember ‘this too shall pass’.  He didn’t chose the medical and behavioral issues he suffers.  But together, we can try to work through them. 

As usual, things settled down after I’d written that old memory:

By Cathy Jameson

Originally written in 2017 for a different audience, this older story describes a successful trip to Mass.  I’ve edited it for our AofA readers today. 

From week to week, Ronan’s ability to sit through Mass varies quite a bit. One week, Ronan can sit through an entire Mass.  The next week, he may refuse to even walk into the church.  Lately, there has been no consistency in his ability to be successful at church.  Instead of pushing him to do something he's unable to do yet, the family and I have decided to split up going to church.  My husband goes to the early Mass while I go later.  It's not what we want to do, but it ensures that the rest of us can fulfill our Sunday obligation.  Occasionally, when my husband is traveling for work over a weekend like he was this weekend, I have to get creative.  

I didn't want to send the kids on their own, which I’ve done before.  So I didn't.  I took a chance by taking all five of the kids to the noon Mass.  I'm very happy that we did!  

Ronan recognized where we were going, even though the church was not our home parish, and he easily transitioned into the building.  Upon entering, we found a quiet section and got settled.  Within five minutes, though, Ronan was ready to leave.  I told him we'd do a countdown, and then I prayed that he'd last longer than the 100 seconds I was slowly counting backwards. 

100...99...98...97...96...

He signed ‘all done’ and proceeded to put the kneeler in the up position.  

...95...94...93...92...

Not wanting a struggle, which has happened plenty of times at church in the past, I held his hand and guided him out of the pew.  ‘All done, all done, all done’, he signed.  "I know, buddy.  Let's go back to the car.  The kids will stay here," I whispered.  Ronan hesitated.  The kids?  He looked back at his siblings and froze.  A confused look came over him as he pointed to them.  

I repeated, "Yes, the kids are staying."  

Ronan didn't like that answer, so he sat in the pew we were trying to go around.  Pointing a very straight index finger at his big sister, he indicated that he wanted her to come with us.  "Oh, she's staying," I quietly reiterated.  Ronan started to tap his hand on his leg, a self-regulation technique he does when we do a countdown to help keep himself calm.  He "taps down" letting me know that he knows that an end is in sight.  

...91...90...

Ronan pointed again to the other siblings.  I reminded him that they were staying for the entire Mass as well.  He was not pleased, but he did not get frustrated when I shared that information.  He contemplated quietly before pointing to the siblings.  Hoping they'd come with him, he began to tap his leg once more.

By Cathy Jameson

This isn’t a post about the pros and cons.  It isn’t a debate for you should or shouldn’t.  It’s a post to share one fact that the media isn’t. 

Several years ago I was in the main office at my son's elementary school when a new family came in.  After settling her kids in the chairs where I was sitting, the mom asked to speak to someone about the enrollment procedure.  The young secretary, a twentysomething, showed and described the forms that would need to be filled out, signed and returned.  When she got to the health history form, the secretary said that the school required a copy of the kids' shot records, too.  I waited for her to add that vaccine exemptions could be accepted, but she neglected to share that information.  The mom thanked her for her time and said she'd get started on the paperwork that day.  "If I have any questions, I'll call you," she said.  I had a question for the secretary, so when the family left, I walked up to the counter.  

"Hey, I couldn't help but overhear what you said to that other mom about that health history form.  Do you ever tell parents that they can submit an exemption, because that's part of the law, too?"  

She said no.  

I told her it would be a good idea to include that info.  Not many people know that it's an option.  I shared that since she's the one person fielding calls and inquiries about school enrollment procedures, she should cite the whole law.

I was happily surprised that she said she probably should tell people that.  

These days, it isn't so much the vaccine laws that are being partly or wrongly cited; state mask policies are being wrongly cited.  

WEAR A MASK

MASKED REQUIRED BY EVERYONE

KEEP MASKS ON AT ALL TIMES

DO YOUR PART!!

How about those sharing the mask information do their part, too?

By Cathy Jameson

I couldn’t believe my eyes when I saw an article suggesting that pregnant women should be first in line to get the undeveloped, untested, unlicensed COVID vaccine when it becomes available.  Other vaccines are strongly recommended for those carrying a child in utero, including the liability-free influenza and Tdap vaccines despite insufficient data being available on those vaccines.  They are pushed heavily even though it is also unknown if the (Tdap) “vaccine can cause fetal harm when administered to a pregnant woman or can affect reproduction capacity.” (HERE)  So why on earth would anyone suggest a pregnant woman receive a fast-tracked vaccine that has had no current data let alone any documented long-term, well-controlled studies? 

I haven’t gotten a solid time table on what long-term testing is considered industry standard—is it 5 years? 10 years? 20?  But I did find a webpage, recommended by the CDC, that somewhat details the average length of time it can take for vaccine development:

Under a heading First Steps: Laboratory and Animal Studies, we’re told that this exploratory stage “involves basic laboratory research and often lasts 2-4 years.”  The next stages, the pre-clinical stages, “often lasts 1-2 years and usually involves researchers in private industry.”  After those stages, add up to 30 more days to the new vaccine development timeline.  That’s how long the FDA has to respond to vaccine applications that have been submitted.  Within that time, the FDA can state they will or will not approve the vaccine for the next stage, which included an additional 3 stages of testing.  Once that’s complete, and depending on the outcome, the vaccine can then be eligible for licensing by the FDA.  Worth noting on this website was Phase IV.  “Phase IV trials are optional studies that drug companies may conduct after a vaccine is released.  The manufacturer may continue to test the vaccine for safety, efficacy, and other potential uses.”  

They may, and I think they should, but they don’t have to. 

The thalidomide tragedy in the last century led to US tightening restrictions "surrounding the surveillance and approval process for drugs to be sold in the U.S., requiring that manufacturers prove they are both safe and effective before they are marketed. Now, drug approval can take between eight and twelve years, involving animal testing and tightly regulated human clinical trials.”

One would hope that this tragedy--where thalidomide drug manufacturers ignored reports of birth defects--would serve as a warning for our own time. But apparently not, as the current COVID vaccine development is taking months, not years, skips animal studies, and may not include complete or adequate human clinical trials.

Looking at each of the CDC’s recommended vaccines licensed by the FDA (section 8.1 on a package insert), one can clearly see that not enough data exists to sufficiently inform the public of risks associated with many of the vaccines during pregnancy.  Maybe that’s why those who administer them are asked to encourage pregnant women to record post-vaccination pregnancy outcomes on the FDA’s pregnancy registry.  Those who license vaccines admit that safety and effectiveness hasn’t been established in that population but will, in the same breath, say to give it to a mother-to-be anyway.  Instead of doing the trial studies themselves, which I understand could be seen as unethical, they’d rather wait until the products is on the market and injected into women.

By Cathy Jameson

My children will return to their academic lessons in just a few weeks.  With Ronan staying home, his siblings, for now, will have the chance to have their classes in the classroom.  Pros and cons exist for returning, for staying home, and for opting for a hybrid-teaching model.  Before the CDC published their thoughts on the topic, we’d already decided that if given the option, we would allow our children to go back to a school this fall.  

While I tend to have a different opinion than the CDC has on other topics, I do agree with what they’ve stated in their most recent report:  The in-person school environment does the following:

• provides educational instruction;
• supports the development of social and emotional skills;
• creates a safe environment for learning;
• addresses nutritional needs; and
• facilitates physical activity.

As a trained educator I can attest that, yes, all of that can happen in an in-person setting.  One could argue that so does an in-home environment offer each of those also.   And it does.  

In the past, when I homeschooled, sending my children to school was not the best option for them.  Based on several factors, we planned each year for each child according to their individual needs.  It was sometimes a very tough decision to make—stay home and teach them with myself, or send the kids to an educational establishment where others took on that responsibility?  Yearly, we’d weigh the pros and cons, including Ronan’s special education schooling needs, and make a decision that we prayed was best and appropriate for our child’s growth and development.  

The challenge to make a school decision this year is greater.  COVID has created massive changes to aspects of everyday life.  It affects a great number of both short- and long-term decisions that we, and other parents, have to make.  It’s not impossible to make decisions, but given the information we’re provided, feeling confident about them can waiver.  That includes feeling confident about knowing what to do for the upcoming school year.

When it starts, this school year will include health checks, physical distancing, and wearing of masks if within a certainly proximity of others.  Classrooms and other areas of the buildings will be modified to carefully accommodate staff and students.  The daily schedule will be a little different than previous years also.  Those changes will certainly make life a little more interesting for them, but I don’t believe that they will deter my children from being active learners in the classroom.

Kim's Daughter Bella when Police Had Visit Day

By Cathy Jameson 

Like another story  I recently shared, this is a memory of something that happened several years ago.  A follow-up of sorts to that phone call I’d received from Lt. Thomas, I shared the encounter with family and friends soon after.  Here is that story, edited a tad, for today’s Sunday post.

So, there I was minding my own business at our local police station when I found myself in one of the back rooms.  While waiting for the young police officer so I could give him some paperwork, I glanced over and saw a note that I made a few years ago.  Hanging on their bulletin board, it's a print out of some stats, including my son’s health information.  It’s there because Ronan is considered a "person of interest".

My first response when I saw the paper and Ronan's picture on it was, "Hey!  That's my kid!" and I'm all sorts of smiling.

In returns the young fellow.  I say to him, "Hey! That's my kid!" sounding all sorts of proud again.  

Then, it hits me.

That's my kid.

And he's on the police bulletin board.

Because he's a person of interest.

He's no criminal, but this group needs to know who Ronan is.  They need to know what he can and what he can't do if ever there is any kind of emergency, medical or otherwise.  

The officer glanced over at the picture and said, "Yeah, I know him.  I remember my first encounter with your son.  He needed help, and I was there to get him home."  I remembered that day and how frustrating it was.  It was a bad, bad day.  But he was there, this young guy, and he helped. 

He was ready, willing and able to offer assistance because he knew who Ronan was and because he was aware that Ronan sometimes needs help.  Our caregiver at the time, I’ll call her Celeste, wanted to take Ronan for a walk.  It was a nice day for Ronan to take a walk.  If it’s too hot, he will overheat quickly.  Too many sunny days in a row had kept them inside.  Finally a bit cooler and also overcast, it was a perfect day for an outdoor activity.   

I knew they wouldn’t go too far.  Ronan lacks energy to go for the long walks his sister and I like to go on.  Expecting them to be back within 15 minutes, it was taking longer for Celeste to return.  That day, Ronan and our caregiver made it to the stop sign, less than a quarter of a mile away.  Wanting to go no further, Ronan lit’rally stopped in his tracks.  Then, he sat down in the middle of the road.  It isn’t the busiest intersection, but it is a 3-way stop.  Where he’d parked himself was dangerously close to the one road that no one slows down on because they don’t have to.  Trying everything she could do, Celeste could not get Ronan to budge.  The more she tried, the more he resisted.  Forgetting to bring her cell phone, I thought maybe they were enjoying a longer outing.  I had no idea what was going on. 

"Daddy!! PEOPLE!!!"

By Cathy Jameson

Right before we began our walk on a hiking trail, my daughter and I noticed a young family had the same idea.  The parents were in their late 20s and carried what looked like a picnic lunch for their little girls.  About to hit the same trail, we set off ahead of them.  At the beginning of the path, we saw a few other walkers in the distance but not nearly the same number of people we would typically see on a Saturday afternoon.  I loved it.

Well into the woods before we saw anyone else, every couple, family and single walkers we would encounter either waved or said a friendly hello to us.  Everyone looked so happy to be outdoors!  I know I was happy to be there.  My summer days are still busy, and finding time to go out with just one of my kids isn’t easy.  All week I’d been wishing for some quiet time with my youngest and finally got that on the 4^th of July. 

While together, we enjoyed listening to the birds, seeing a family of deer and listening to kids playing in a stream.  It was very hot that day, so we needed to be careful in the heat.  We stopped several times along the path to observe nature, to climb rocks, and to just take a break.  As we turned around to head back to the trailhead, we spied that same young family we’d seen when we started out.  I couldn’t see the mom around the bend, but we were a short distance, about 100 feet, from the father and the older girl. 

Tired and hot from our long walk, I still smiled in their direction.  The girl, who was about 3 years-old, didn’t smile back.  About an arm’s length away from him, she immediately ran toward her father and buried her face in his leg when she saw us.  Strange, I thought.  I wonder what frightened her.  We’ve seen all sorts of animals in this area in the past, including snakes, so I assumed she’d caught a glimpse of something creepy near us.  I glanced to the right of me, behind me and to the left of me.  I could see nothing but trees, shrubs, and my own child.  Turning my head toward the little girl and offering another friendly smile, she cowered and yelled, “Daddy…people!!”

For as long as I can remember, going back to when I was a child myself, young children gravitate toward me.  I don’t know if it’s my dark eyes, my dark hair, my welcoming smile, or my general presence that draws their attention to me.  Even if I’ve made no outward sign to get a child’s attention, they try to get mine.  I won’t engage with a child when I’m out unless their parents are within sight and aware, because I would never take advantage of a child who’s dropped their guard like it seems they do when near me.  Stranger danger is real, but so are opportunities for random acts of kindness which I like to think these kids are feeling.

by Cathy Jameson

The reminder.  I knew it was coming.  I thought I’d be prepared for it.  But I wasn’t. 

Last week, Ronan got his first piece of mail from one of the branches of the United States military.  For years, I’ve read about other parents of special needs children and their reactions when mail like that was delivered to their home.  Sometimes it’s shock.  Other times it’s sadness.  Walking from our mail box toward the house while holding the envelope with Ronan’s full name printed on it, I laughed out loud. 

Wait til I show the kids this!  They are not going to believe it.

So that they could form their own opinion about the invitation to join the service that Ronan received, I left the envelope on the kitchen counter and walked away. 

The advertising to join this dedicated crew was full of every patriotic concept I’d hope they’d include – if you’re mentally tough if you’re physically tough, if you are driven and not afraid of commitment, if you want to make a difference, if you want to build leadership skills and serve your country – it was a very well thought out message!  But my son would be excluded from all of that.  Unbeknown to whomever addressed that letter, Ronan has a disqualifying condition: autism.  That and seizures give him no chance to serve in the US military like his grandparents, his uncles, his cousin, his favorite aunt, and his father have served.  Others with an autism diagnosis may have gotten through the initial steps to join, but they were quickly sent home. 

Just for grins, I went to the website of the group that sent Ronan the mail.  On it, I could enter some personal data to see how good of a match Ronan might be.  Ronan’s got several delays, to include his physical growth.  He’s shorter than what the CDC growth charts suggest for a kid his age.  He’s also weighs a bit less than their average, too.  Typing those numbers in, I wasn’t surprised that he would need to gain some weight before a recruiter would even think to contact him.  Ronan would also need to get busy working out. 

For initial enlistment, Ronan would have to be able to do 35 push-ups in 2 minutes, complete 47 sit ups in 2 minutes, and run 2 miles in 16 minutes and 36 seconds.  Ronan cannot walk more than 2 blocks before needing physical assistance.  That comes in the form of either one of us holding his hand to encourage him to keep putting one foot in front of the other or getting his stroller out.  If Ronan’s not too tired, he can hold the handle of the stroller and use it as a walker.  If he’s too exhausted, which is often the case, he climbs into the stroller and signs for us to please push him.  I already knew this, but a fast-paced, high-energy career like what the military offers would be ill-suited for Ronan. 

I’d left Ronan’s mail on the counter all afternoon.  One by one, each of the kids had the same reaction I did.  They laughed, and not in a mean way, but at the absurdity of the thought of Ronan in the military. 

What?!  The military?  I’d like to see that!  

Note: Even during the COVID shutdown, our kids are at risk for wandering, and summer always brings the fear of drowning.  Stay safe has ALWAYS been our mantra in the autism community.

By Cathy Jameson

This time of year, I’ve usually seen more than a handful of autism-related wandering stories.  I’ve only seen a few.  But even one story is too many.  I’ve shared a few stories myself over the years.  I’ve also shared how our local police have been immediately available to us in those moments of uncertainty.  Most of the time, the citizen reaches out to the police asking for help.  I was recently reminded of the time when they reached out to me. 

Several years ago, I was able to get to the library alone.  Looking forward to the quiet and to writing a new story, I was interrupted before I could turn my laptop on.  My cell phone rang.  Easily I could have ignored the call, but I got a feeling that I needed to answer it.

“Hello?” I quietly answered. 

“This is Lt. Thomas with the police department.  I need to speak to Cathy Jameson.”

Breathe.  Breathe.  Breathe. 

Visions of the worst disasters imaginable flashed through my mind.  I quietly darted outside.  Barely audible, I replied, “This is Cathy…”

“Hey, Cathy.  I need some help.” 

The officer was chipper, so I took that as a good sign.

He continued, “I need an update on Ronan.  We have his file here with his picture.  You gave that to us a few years ago.  We want to make sure we have accurate information now just in case we’re called to respond to an emergency.”

My heart stopped racing.  A smile spread across my face. 

“Oh!  Well, of course!  I can update that stuff for you today.  Let me do that when I get back home.”

The officer went on, “We know he’s got some special issues, so whatever we can do to help, just let us know.”

Within seconds of answering the phone I went from thinking worse-case scenario to wanting to cry tears of happiness and thanksgiving.  The police know we have a very delicate situation.  They want to help.  They know Ronan has some very great needs, and they recognize that it can take extra time and effort to keep a child like him safe.  I welcomed their support. 

We’ve had to call the local police before.  Without any hesitation, they leaped into action.  That happened when Ronan went missing on a cold, dark night several years ago.  I never want to wish that experience on anyone.  That night, with the help of our neighbors, and with the immediate response from the police and sheriff’s department deputies, we had quite the crew fanned out looking for Ronan.  He was found safe a few houses down the street from our home.

We ran this post as a "best of" in 2018.  That's when Summer wasn't such a bummer, eh?"  The information is as important as ever, dental care is a huge issue for us. My own daughter had an appointment last week - in hospital - for a filling.  The doctor extracted her tooth! Usually a cavity has no more than a few months to worsen, with twice yearly dental visits. But adults do not get twice yearly visits on Medicaid. And finding a dentist who accepts Medicaid AND patients with autism takes more time than you imagine. And then getting an appointment with the doctor takes a whole long time because there is a wait list. And then once in the chair, if you need a filling and general anesthesia, the next available operating room slot could be (was) several months away. And then when COVID cancels your appointment for another three months? Fuggedaboudit.  How do you manage dental care?

By Cathy Jameson

"To promote the right to individual health choice and stand up for the victims of medical injury."

I scheduled my typical children’s dental appointments over their summer vacation.  Sitting in a dentist’s office for two and a half hours on a sunny afternoon wasn’t on my top 10 things to do while on summer vacation list.  Neither was defending medical choices I’m forced to make for my kids.  But that’s what ended up happening on a hot July day.

I shouldn’t joke.  Taking four children to our dental provider really isn’t that difficult; it’s more time consuming than anything.  After a terrible experience with another dental group in town, I’m grateful that our current dentist knows us well.  The staff listens to me.  They respect me.  They understand why I’ve made the medical decisions I’ve made for my children.  It’s comforting that they recognize that some of my kids are medically fragile.  What’s considered “industry standard” by some can send my children into a downward spiral with potentially long-lasting ill effects. 

So, smack dab in the middle of summer vacation was just as good a day as any to bring my kids in for a teeth cleaning.  I was prepared for the long afternoon and made sure to bring things for my kids to do while their siblings’ teeth were checked.  Just when I thought it would be business as usual, a new dental hygienist greeted us in the waiting room.  I wasn’t aware that the one whom I’d made a great connection with (she too had a young child with developmental delays) had recently left the practice. 

Politely introducing myself and my two older children whom she’d be working with, I felt somewhat exposed talking to the new hygienist.  Stating pertinent health and medical issues my children had, I went through a list of things we usually request. 

We can sleep well tonight knowing that Bill Gates has transformed Dr. Peter "Vaccines did not Cause Rachel's Autism" Hotez' life. Money will do that.   Dr. Hotez earned $70K for working just 10 hours a week in 2016 for the Sabin Institute. That's around $145 per hour. Not a bad wage by the average American's thinking. And that was a side gig.  For most of us, autism has thrown our finances into a blender set to shred. 

#MeetBillGates

  Source: https://www.guidestar.org/profile/06-1389829

By Cathy Jameson

In the midst of the incredible COVID-19 worldwide event, shelter-in-place orders were promulgated by the state.  Americans were encouraged to stay away from and were even prevented from entering medical facilities, but one medical treatment was given a pass: vaccines.  

The shutdown of medical facilities affected countless patients across the country, including my son.  Where we could no longer access direct medical care for him with a team of physicians who knew his needs best, I was allowed to walk him right into a pediatrician’s office for a liability-free vaccine that comes with known adverse reactions and negative side effects.  That’s because the American Academy of Pediatricians (AAP) was quick to  disregard US governors’ stay-home orders.  Instead of waiting for America to re-open like practically all other businesses had to, the AAP created a plan to keep vaccine visits a priority.   Schools are taking on that same message.  That’s nothing new.  It doesn’t happen this early usually, but schools are now parroting information from the industry.  Get your shots.  Get them now.    

Recently, I saw a notice regarding school physicals.  Despite the restrictions that closed many classrooms and educational centers this year because of COVID-19, school officials remain hopeful that buildings will open in the fall.  With that, parents were being asked to think ahead.  That includes getting their students’ physicals.  It also means getting up-to-date on vaccines.  

Some clinics are suggesting catch-up shots as well.  

At many well-child visits, beginning at 2-weeks of age, a set number of vaccines is recommended.  If the child was unable to get to the doctor for the previously suggested appointment, the doctor might suggest that they get both sets of vaccines.  Doubling up on shots doesn’t sound like the best idea, and that isn’t just a personal opinion.  Safety studies have yet to be established on the entire vaccine schedule.  To administer twice as many vaccines in one visit is ludicrous.  

Something else that is unreasonable is that all too often, a school will cite the state law and send out a blanket statement: Shots are required for school entry.  The school letter starts by stating that vaccines are safe and effective.  They then list vaccines requirements, usually by grade or age.  Some will use language that makes it sound as if it’s impossible for a child to gain school entry without a medical physical and all of the liability-free vaccines on the schedule.  What isn’t included in those official notices is the smaller, yet equally valuable, message:  exemptions are allowed.  

Many states have taken exemptions away, but some do still exist.  While personal belief and religious exemptions have been removed, medical exemptions exist in every state. 

by Cathy Jameson

It was around 9 pm on Thursday evening when a storm came through.  One of the first thunder storms of the season, this one had the works – lightning, thunder, and steady, heavy rain.  Never a fan of thunder, especially at night, I was glad that we were altogether in the den watching a movie as a family.  Snuggled between Ronan and his younger brother on the couch, I felt safe. 

Turning off the TV after the movie ended, we stayed in the den a little bit longer and said prayers with the kids.  Just as we sent them on their way to get ready for bed, the electricity went out.  In between flashes of lightning was total darkness.  Groping the furniture so as not to trip on anything or anyone, I looked for a flashlight.  Ronan’s youngest sister is terrified of the dark and had just gone to my bathroom to brush her teeth.  Knowing she’d be really, really scared, and because that bathroom was on the complete opposite side of the house, I made a plan.  That plan changed when I realized that Ronan’s brother had just gone into the basement to play video games.  Both were in darkness and would have to make their way through an even darker hallway.  Since she was more scared than he, I ran to her first.  Not as nervous as I get with thunder, but just enough to be a bit jittery, Willem laughed the entire way back up the stairs looking for the rest of us.  Finding Ronan, he offered to bring him to his room and help get him ready for bed. 

Once the kids had flashlights and could continue with the bedtime routine, I went back to clean up the den.  I thought Fiona had gone to her own room to go to bed already.  She had to be at work at 5 am the next day, but I could still hear her voice.  Listening for where it was coming from, I was surprised to hear her in my younger girls’ bedroom.  I was even more surprised as I realized all of my children were in the girls’ bedroom.  Ronan and Willem had taken a detour and joined them. 

Not wanting to break up the sibling bond, I stopped in the darkened hallway and listened.  I could hear laughter, silly noises, and funny stories being told.  The storm, which had wreaked havoc in our neighborhood, had brought them together.  Cherishing the moment, I thanked God for the lightning and thunder I normally loathe.

Like other storms I’ve experienced, last night’s is now but a memory. 

Sitting down today to write, I was struck by how often ordinary life turns ominous.  Without warning or preparation, one finds it’s dark and scary.  As you grope through the gloom, your first thought is for those who are vulnerable, the ones most dependent on you.  Will they be okay?  Will they make it through?  Will they be scarred?  If yes, for how long? 

But rather than wallow in the shadows or the darkness, I remind myself to look for the positive.  I haven’t always done that, including when Ronan was injured by vaccines.  Discovering that injury was a horrible realization.  On the very tough days, it still is!  What positive could possibly come from it?  Well, when I think about it, I can list a few encouraging things that have happened – I’m a better advocate for all of my children because of that injury.  I’m a stronger mother also.  It might not occur right away, but I think other parents can eventually list a few positive things in their life as well.

Today we have a "Best of" from May, 2016. Cathy is taking a well deser ve Covidcation from her Sunday AofA duties.

By Cathy Jameson

When my children were babies, I didn’t question vaccines.  I never thought to because I believed wholeheartedly in them.  As a young parent, I thought vaccines were going to protect my children.  They were going to keep them healthy.  They were going to keep them from getting sick from disease.  I thought that if they didn’t get them, my kids would get sick.  But the more vaccines they received, the sicker my children became. 

Struggling to understand why they weren’t healthier, I started to read about vaccines and the immune system.  Having never cared to research those topics before, I was a bit overwhelmed.  Not vaccinating came with risks.  But continuing to vaccinate carried equally disturbing risks.  I wasn’t just overwhelmed with what I was reading.  I was totally confused! 

I walked away with more questions than answers each time I sat down to read or to look something up.  Blinded by the science, it took some time for my eyes to fully open.  Once they were finally opened, I didn’t stop the vaccine searches I was doing.  I continued to read more. 

It was only after reading as much as I did about vaccines and after distancing myself from them that I could see that the practice of tricking the immune system to produce a response that would hopefully create life-long protection was somewhat preposterous.  Sadly, that realization came only after I had subjected my children to that practice.  

The type of responses my children had to vaccines were not the ones the doctor or the pharmaceutical companies advertised.  Theirs resulted in negative responses, with Ronan being the worst response.  The loss of speech, the onset of seizures and debilitating developmental delays were what followed his vaccinations.  As bizarre as this may sound, those negative outcomes later contributed to a positive solution.  Instead of choosing to continue to follow the recommended schedule that was doing more harm than good, I confidently walked away from it. 

I started on a new path when I left vaccines behind.  It took a great amount of time, reading, and confidence to come to the conclusion that they weren’t the right choice for us, but that choice has served my children well.  That choice has also served up some regret.  But I do believe it has a role in the overall healing process – if I didn’t regret what happened to Ronan, I don’t think I’d have worked as hard as I have for him nor for as long as I have. 

I haven’t opted for them lately, but I still find myself reading about vaccines – not because I don’t know enough about them already.  I continue to read about them because I am frequently asked about them.  Young parents who learn that I’ve been vocal about the subject are curious about my stance and want to know more. 

Surprisingly, many young parents know quite a lot already!

By Cathy Jameson

We have an incredible opportunity right now.  Maybe you’ve seen it also?  I’ve noticed lots more talk about vaccines on social media in the last few weeks, and much of it isn’t coming from the usual sources.  Back in January and February when coronavirus news was picking up, there was some talk about them.  But now, you can’t avoid the vaccine talk especially when government officials claim that things can’t go back to normal until a vaccine is available. 

From California to New York, governors are making bold statements about their state’s future.  They are also putting a lot of faith in a product that’s yet to be fully safety tested or licensed:*

California Gov. Gavin Newsom announced this week that, while California will move into the next phase of reopening its economy this week, it is “not going back to normal” until there is a vaccine.

“This virus is still very dangerous, and it still poses a great threat,” the governor said. “Until there’s a vaccine, unfortunately, we will not be able to go back to life as we knew it, in Oregon or, frankly, anywhere.”

"Until we get a vaccine, until we get a way to prevent this, things are not going to be totally normal. But we're going to ease into it," DeWine said. 

Cuomo said the state has to “build a bridge from where we are to the reopening of economy,” which he said will be a “new normal.

It’s over when we have a vaccine. It’s over when people know I’m 100% safe and I don’t have to worry about this,” Cuomo said. A vaccine is expected in 12-18 months, and New York is “all in” to help expedite that process.

*Per the CDC, liability-free vaccine safety testing can “…take several years. Once testing in people begins, it can take several more years before clinical studies are complete and the vaccine is licensed.”

While some may wish those vaccine conversations to go away, I say let’s talk about them!  More people are listening.  And I’ve noticed a lot of them are not parents like you or I who have a child with a vaccine injury.  High school classmates, former neighbors, moms I knew when my children were younger are all sharing the same thing – they’re against this vaccine.  No way will they get it no matter how many will be available in a short 12 - 18 months.  Several groups are “racing” toward what officials call the only solution, but these people I know will not be fooled. 

The opportunity that’s in front of us is to add to the conversation the governors, the media and top officials have started.  Close friends and supportive family may already know your story and your opinion about vaccines, but it wouldn’t hurt to talk some more.  You don’t need to get too personal, but reminding them of just 3 simple facts would be a good place to start:

1-Vaccine consumers cannot sue vaccine manufacturers if they encounter a problem with a vaccine. Not being able to take legal action is an unfortunate truth.

via GIPHY

By Cathy Jameson

A few years ago, a radio DJ shared that families spend an average $173 on Mother's Day gifts.  I laughed.  Every year I tell my husband and kids that I don't need anything fancy bought that day.  In fact, I don't need much for Mother's Day at all.  When I shared what I'd heard that story with my family later that night at dinner, I said, "We're going to save SO much money.  All I want is a nap and a sandwich.  And since I'm the one who buys the groceries, I'll make sure there's sandwich stuff for the weekend.  Someone just needs to make it for me.” 

Each year I joke about treating Mother’s Day like a regular day, but my family insists on doing something special for me.  I never turn away their gifts, their praises, or their smiles.  Today, like always, the kids will shower me with hugs and home-made cards.  After I eat my sandwich, I’ll go for a walk.  Later, I’ll nap.  I’d like for this year’s celebration to be the same as last year’s—to keep things simple. 

With how strange life’s been these last two months, I’m craving simpler times.  With all the seizures Ronan had 4 mornings last week, I’m desperate for something simple for him, too.  Ronan’s seizures aren’t new.  But the clusters he’s having upon waking up are.  We’re fortunate that we’ve been in constant discussion with our doctor about these changes and are actively working to find a solution.  Our phone calls to the doctor are answered quickly.  Our emails have good advice.  It hasn’t been a quick fix though. 

As with other medical issues we manage, what should be simple is complicated.  What works for one kid, will not work for mine.  It’s all so frustrating.  In the middle of it all, though, we celebrate a breakthrough.  Ronan told us before one wave of seizures started that he wasn’t feeling well. 

On Friday morning, when his device was in a different room, he signed ‘head hurt’ after another cluster ended.  Never before has he indicted pain associated with seizures while he’s having them.  As awful as that realization was, I was thankful for Ronan ability to still be able to communicate. 

The seizures he’s having don’t stop Ronan completely.  He quickly resumes the activity he was doing before they started.  He’ll sometimes even flash a genuine smile afterward.  Even when they are over quickly, the seizures have a way of paralyzing me and my thoughts for several hours afterward.  I’m praying the clusters will have subsided, but if the pattern we saw last week continues, he’ll have them on Mother’s Day as well.

Album cover The Eagles Hotel California

"Relax," said the night man
"We are programmed to receive
You can check out any time you like
But you can never leave!"

By Cathy Jameson

Many people are experiencing difficult times due to restrictions placed on every-day activities.  So far, we’ve been able to handle much of the day-to-day life that comes with such a major change.  Ronan’s done fine with staying home also, but if his medical issues become more complicated, who will we be able to turn to?  His providers have always said that they want to see him, but that was before lockdowns were put in place.  They’re under added stress, and now, so are we. 

Trying times for sure…

The memes I’ve seen during the COVID-19 quarantine have been absolutely hilarious. 

When I woke up on the last day of April and saw this one, I thought, holy cow, yes.  This!

After giggling, I said to myself, “Whew!  We survived another month,” but couldn’t help but think, “I wonder what’s going to happen next.”

Since going into lockdown, most days have been a blur.  Certain days will stand out, especially the ones where we see Ronan struggling.  Those are the most frustrating for him and for us as well.  I want for those frustrating days to end so Ronan can be his happy self again.  I can usually solve whatever problem has come up thankfully.  When I can’t, though, I know to reach out to one of the many people we have at our fingertips and ask for help. 

Unfortunately, like us, those who can help are also dealing with their own set of restrictions.

By Cathy Jameson

Lest you thought I forgot, today is the day I get to share this year’s autism action playlist!  I love to flood my office with music.  I also love to create this annual post.  It’s a favorite of mine to share with you. 

I easily could’ve created a quarantine-specific playlist this year, but those kinds of lists have been made by other people already.  Even with how strange 2020 has been, I’m going to stick with songs I started writing down last year.  Prepping this post long before I sit down to type it, I keep a little notepad in my car and write down the titles of songs I hear that evoke emotion.  Some songs are dedicated to those providers we cannot support anymore.  Others are for that warrior mom or dad who needs a little bit of encouragement.  Some songs are just for fun. 

As always, if you have a favorite one you want to share with all of us, please add a link to the song in the comments section below.  Tell us why you like it, too.  I’m always looking for new inspiration.  If it’s got a good beat, I promise to dance to it in my kitchen. 

Enjoy! 

Since You’ve Been Gone – Remember, songs may have been written about a terrible breakup or about a scorned lover, but replace that original subject with something in your life while you listen.  Instead of a lover, think about that pushy pediatrician or the deceitful principal who bullied you, and voilà!  The song lyrics are perfect.  As much as we may at one time have wanted to stay with that pediatrician or hope that that administrator would soon be on our side, it was much better to stay broken up.

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

Little Lies – Kudos to my kiddos who wanted me to include this song in this year’s playlist.  I thought it appropriate to add after that first entry.  Lies, even little ones, are never worth saying.  Be truthful.  Always.  We’d all be better off with more of the truth being shared.

https://www.youtube.com/watch?v=uCGD9dT12C0

Unforgiven – It’s too bad that some people cannot share the truth.  Look at today’s media reports spinning every untruth they eagerly create.  It’s sickening.  That’s why this next song is perfect.  And, I know…I know.  Just as the truth is important, so is forgiveness.  But some people make that act hard to do.

By Cathy Jameson

April snuck up on me this year.  Over the years, I’ve come to dread this month.  Before it even begins, the mainstream media and many for-profit companies begin to cash in on a disorder that’s left my son with more problems than solutions.  For 30 solid days we hear how glorious the media think autism is.  Forgetting that it’s a spectrum disorder and that many children, like mine, have very limited abilities because of autism, it can be nauseating. 

COVID-19 created massive changes this April and reduced autism reporting and product-label hijacking normally seen.  Instead of the typical blue-washing that usually happens this month, I’ve seen a thousand times more COVID-19 related stories than autism stories in the news.  I haven’t seen nearly as many autism signs or packaging in grocery stores either.  I appreciate that I am seeing less autism awareness campaigns in 2020.  A staunch supporter of autism action, I believe that awareness can only go so far.  The continuous increased rise in autism, which is now 1 in 54, proves that. 

That rate was announced in late March.  Not an unusual time to share that sort of information, I had forgotten that an updated rate would be announced around then.  Thanks to COVID-19, by the end of March a Tuesday felt like a Sunday, and a Friday felt like a Monday.  Well into the kids’ new eLearning schedule and our family’s quarantine routine, I’d begun to lose track of time.  With no appointments to run out to, each day began to meld uneventfully into the next.  I had truly forgot what day it was and what month is was.  That is until Ronan had seizures.  It wasn’t until I went to document the 11 seizures he had on the calendar that I realized it was April 1^st. 

How ironic.

While the mainstream media focused their news stories on COVID-19 and fast-tracked liability-free vaccines, Ronan had a steady stream of seizures on the 1^st day of a month I usually wish we could skip over.  One right after the other, it was not an easy day for him.  It was not an easy day for any of us.  With the whole family home, we sprang into action taking seizure watch.  We then took turns making sure Ronan stayed cozy in one spot as the emergency medication took effect.  Sometimes he will get quick relief.  Other times, it can take an hour or longer for him to be comfortable again. 

Hoping that Ronan would be able to sleep off the late-morning seizure activity, Ronan stayed awake into the early afternoon.  Sitting behind me in an over-sized chair in our office, and through two scheduled Zoom meetings of mine, I kept an ever-watchful eye on him with the help of his youngest sister for the rest of the day.  Without any further seizure activity, Ronan fell asleep at his usual bedtime later than night. 

The day after a rash of seizures can be just as frustrating and emotional as the day of the seizures.  He got to sleep in, but I wasn’t surprised when Ronan woke up on April 2^nd, which society has dubbed World Autism Awareness Day, a little grumpy.  Dude, I feel ya, I wanted to say.  I’m not a big fan of this day either.  But I kept that to myself and got Ronan everything he’d need to have a carefree, easy day.

Lent is the 40 days (not including Sundays) from Ash Wednesday to the Saturday before Easter. Lent is often described as a time of preparation and an opportunity to go deeper with God. This means that it’s a time for personal reflection that prepares people’s hearts and minds for Good Friday and Easter. Source

By Cathy Jameson

I laughed out loud when I saw this meme two weeks into the quarantine.  It was so perfect, so timely, and so hilariously true.

I wish I knew who to give credit to for that meme.  At the time, it truly was exactly what I needed to see.  

For those who may not know, Lent is a time for Christians to reflect and to do without.  In preparation for Easter, we contemplate on Christ’s life.  A time for forgiveness, we can make a promise to do something better – if not for ourselves than for someone else.  A liturgical season that lasts for 40 days, we also selflessly give up something that means a lot to us.  My kids don’t love Lent, but each year they can’t wait to share what they’re going to give up. 

Days before Ash Wednesday, when Lent officially begins, they go around the dinner table telling me and my husband all about it and why they’ve chosen that sacrifice.  Their sacrifices are much simpler than ones an adult would choose.  Giving up playing with LEGOs or giving up seltzer would be a breeze for me.  My kids are always curious what I will give up.  Sometimes I tell them.  Other times I keep it to myself.  At the end of our conversation, one of the kids always asks, “Does Ronan have to give something up, too?” 

No, never, we tell them. 

Through no fault of his own Ronan’s given up so much already.  To ask him to give up something that makes him happy would be cruel.  The kids agree and are glad they we’d never take away any of his games, favorite foods, or fun activities. 

The siblings would love to get Ronan back some of what he’s lost.  The ability to speak again.  The ability to play normally again.  The ability to be a typical kid again.  It doesn’t matter how many years they’ve seen Ronan go without any of that.  They hope that one of those skills would re-emerge.  They know it could take a miracle, so they pray for one.  I pray alongside them hoping and wishing for the same. 

Going without.  We’ve done that.  We do that all the time.  When Ronan can’t tell us why he’s hurt.  When he can’t complete the simplest of tasks.  When he tries and tries, but gets frustrated instead.  He doesn’t ever give up, but those moments where he just can’t are painful reminders of how much he’s lost. 

You’d think that we may give up in those overwhelming moments.  But we can’t.  Where Ronan’s gone without, the siblings have risen up.  With all of us home now during this Lentiest Lent of all Lents, they’ve stepped up and helped him with daily living skills.  They’ve taken time to help him with his bathrooming needs.  They’ve selflessly helped with feedings and with keeping seizure watch.  They’ve been vigilant and protective.  They’ve been compassionate and caring.  They’ve been incredibly silly, too, and kept Ronan happy and laughing.  Lent is supposed to be a somber time.  But it never could fully be our house.  In order to keep Ronan’s spirits up, we must keep ours up also.

Note: The photo is my choice. We need to laugh right now. And Cathy is a great wife and mother by any and all standards. Many of us are work overtime, double time, triple time to keep our households running and our kids moving if not forward, at least not backwards. Cathy is blessed with a strong, capable husband who helps in many ways - some of us are single Dads or Moms, one of our Warrior Mamas lost her beloved husband to cancer last week, at the tender age of 52.  Be kind. We're all trying hard to hold our lives together. Thank you, Cathy, for your Sunday posts. They are a bright spot for all of us.  KIM

By Cathy Jameson

I’ve combined two articles and some old photos I shared elsewhere for today’s post.  With how much time we’re spending at home these days, our house has once again turned into a therapy house.  I imagine yours may now be as well. 

I always joke that our house is not just our home; it’s an oversized therapy room.  We have two swings permanently installed inside.  We have a mini trampoline, a small slide, and at one time, we had a full-size trampoline in our basement.  We’ve had various sized therapy balls including those sit on hop-along-balls inside our home, too.  Pull-up bars, pogo sticks, gymnastic rings, scooters, roller skates balance bikes, and exercise mats have found themselves in our home as well.  And that’s only the gross motor equipment! 

We also have sensory buckets, games with magnets and marbles and board games that I used to play as a child.  And LEGOs.  We have LEGOs as far as the eye can see.  Those are everywhere.  Including my bathtub.  They are in there because the kids will sometimes want to test out boats they’ve made to see if they will sink or float.  Ronan isn’t a big fan of these fine-motor types of toys, but my typical kids like them.  They love to explore and create.  They are happiest when they are doing something constructive.  Working together or independently, my kids cannot wait to be done with schoolwork and chores so that they can play, play, play.  

While the siblings play as much as they can, Ronan continues to show that he’s not interested in any of it.  In fact, the older he’s gotten the more sedentary Ronan’s become.  He prefers to play his Wii games more than do the puzzles he used to love to do.  He would rather listen to music or watch YouTube videos than explore his books and games that used to engage him.  I don’t want to have him on screens all day when he’s home, so I initiate activities with him.  Ronan loves words, so many of the activities I set out are ones that I hope will boost his vocabulary.  Ronan doesn’t always like to do them and will protest, even if he knows what to do.  But he works through whatever game or activity I’ve set before him with the promise that he’ll get a turn doing what he wants to do next. 

Some of the activities I present to Ronan are very simple.  But with Ronan’s limitations, they will be a struggle.  Ronan’s fine-motor skills are weak, and it takes him a long time to complete a task.  Knowing that, I will give him constant feedback.  Positive feedback works.  So does the promise of more cookies!  I love this request Ronan shared with me while using Banangram tiles one morning.

Aaaaand it's April 1, 2020.

Here we are, Autism Action month. Will anyone pay attention or care? The window dressing and blue lighting of years past seem quaint. COVID-19 has taken over our day to day life in an extreme way.   I've always thought the post below by Cathy Jameson set the right tone for each April, which is why I re-run it from time to time. It last ran in 2017. Image that. Three years have passed by like a flash. My Gianna was still in school, months away from her 21st birthday. Mia was a newcomer to day programming. Bella was a sweet sixteen year old.  I was still Kim Stagliano. Our community is hurting badly. And there's no realistic end in sight to this era of self-isolation, no school, limited work, routines built over time and with blood, sweat and tears shattered like fragile glass. Gianna keeps a calendar on our kitchen island. Each day has the name of someone with whom she'll be interacting. These are the people who help fill her day with meaningful moments. She just wrote out the 30 days of April.

MOM MOM MOM MOM MOM MOM MOM MOM MOM MOM MOM MOM MOM MOM MOM MOM MOM MOM MOM MOM MOM MOM MOM MOM MOM MOM MOM MOM MOM MOM

Love to all our readers.  Kim

###

Aaaaaaaaaaaaaaaand it's 2017. "Y'all ready for this?" I want to do a reverse Punxatawny Phil and crawl INTO my den for the month. Kim

###

Aaaaand it's 2015.

Managing Editor's Note: We ran this post from Cathy Jameson last April -  2013.   I wish it were out of date.  366 days later and it still works...

By Cathy Jameson

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

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

By Cathy Jameson

I appreciate the recent precautions that have been put in place.  As much as I want to venture out, I’m staying put.  Thankfully, I’m still able to conduct much of what I need and want to do from home via phone calls and emails.  Zoom meetings have been a great addition to my life as I’ve enjoyed “seeing” other people even if just on the computer screen.  While my family has settled in with the changes, I realized that I can’t do everything from home.  Ronan’s medical needs are far too great.

Right before the quarantine, I’d taken Ronan to another of his follow-up appointments.  It was for problems that brought us to the E.R.  back in December.  While there, his providers and I discussed the next steps.  That included adding a new specialist and making more follow-up appointments with existing specialists.  Before we ended week 1 of this lockdown, all of his appointments were cancelled.  Only essential employees would be working, and only emergent medical cases would be considered. 

I made a call to one of the nurses first thing on Monday morning and shared some new concerns we had seen over the weekend.  It wasn’t an easy phone call to make.  I had read of the restrictions.  I also knew that other families are dealing with far worse and need more immediate attention and we may experience major delays.  Ronan needs help, though, and some of it cannot be done from home or via telemedicine.  Not wanting to take too much of her precious time, the nurse assured me I’d done the right thing.  She also shared that what we’re dealing with would take top priority.  I asked her what that meant.  Clinics have closed, patients have been turned away, and appointments were being rescheduled for 6 - 9 months out.  I was grateful that top priority meant that Ronan moved up the list.  I was sad to learn that another kid would be moved down. 

How does one decide which patient is more critical than another?  Who makes that decision?  And what happens with the kid who moved from the top spot to somewhere in the middle?  Is their family still able to reach out to the ones they trust and depend on?  Or do they have to wait until things go back to normal again?  

For some medical issues, Ronan requires hands-on care and procedures that will have him go under anesthesia.  We know that complications from the procedure could arise.  Having gone that route before, we understand the risk.  Before even considering doing that, we’ve asked for our team to teach us how to do things differently and even better than we are.  We’d love it, and I know they would, too, if we could forego a trip to hospital.  But we can’t.  And the team is calling us in.  Complications from the condition supersede the shelter-in-place requests.

By Cathy Jameson

For some people, this Coronavirus quarantine hasn’t been easy.  Thinking the very worst, they’ve gone into panic mode.  Some have even gone panic-shopping and left grocery store shelves bare.  Thankfully, our pantry was looking fine when we heard that schools, businesses and life as we knew it would be shutting down.  I haven’t calculated what we’d need if the quarantine is extended, but I think we have enough supplies to last us a little bit longer than the average family.  Knowing that is a comfort.  The fact that we’ve offered to share what we have has been a comfort to others. 

Something else that I’m finding some comfort in is the fact that we are home.  This school year has been our busiest.  When I heard that other states had already told people to stay home, I was all for taking a time out from every-day life.  That would give me the chance to stop, breathe, and stay away from the masses.  They might not feel the same way, but I’m thrilled that my entire family has to stay home also.  Usually, we’re ‘hit the ground running’ kind of people.  We have to be.  Having 4 typical children, and a child who has medical issues that come with autism and vaccine injury, has us up and out the door plenty of times during a normal week.  With life now in slowdown mode, I am taking stock in what’s most important in life: my family.

Family truly makes my world go round.  Everyone in it and everything about it is important to me.  What’s most important to me these days, besides maintaining a positive outlook, is keeping us healthy and also keeping Ronan healthy.  We’ve heard that the complications he already faces could worsen.  Maintaining his health has always been a number one priority for all of us.  It’s even more important these days. 

Keeping Ronan home this week hasn’t been hard like it may be for other families who have children with autism.  Social isolation has been a way of life for a long time for us.  Ronan’s gained some great people skills, thanks mostly to his siblings who encourage him to join them when they have fun events to go to.  But public places can be a bit overwhelming.  They can be for Ronan, and sometimes, they can be for our entire family.  Ronan doesn’t tolerate stores.  He doesn’t like to sit quietly at church.  He doesn’t want to go to the park.  He doesn’t care to be out in the world socializing and being around others like the rest of us like to.  Rarely does he shy away from his siblings, but he will sometimes take a break from all the energy they bring into the house.  We know that Ronan needs his space, and we respect that. 

While it may have interrupted their routines, having all the siblings home during the day has offered more social opportunities to Ronan than other days.  

Reading for leisure