By Cathy Jameson

I saw a beautiful video right before World Down Syndrome day last week.  The video was quite moving and reminded me of a young man Ronan and I met a few years ago.  That encounter that had me grinning from ear to ear, so I wrote post about it.  In honor of those who have Down Syndrome, I thought I’d share that video and ask Kim to rerun that post today. 

https://vimeo.com/86925527

Psalm 139 Reflectors Reading from Faith Church on Vimeo.

In that story from 2017, I shared a happy moment.  I also shared some tips to help people  focus on the ability.  As the world gears up to recognize autism, feel free to add some tips of your own in the comments.  

Beyond The Disability, 2017

By Cathy Jameson

We were at a children’s hospital last week for some testing.  Ronan had two appointments spaced several hours apart.  It was going to be a very long day for him.  It was going to be a very long one for me, too.  Despite that, I was actually looking forward to our day out.  We were catching up with one Ronan’s providers we met about a year ago.  Integral in getting some much-needed equipment and services for my son, I looked forward to hearing what else he might suggest I could, or should, be doing for Ronan.  Before that follow-up appointment though, Ronan was scheduled to see a new doctor.  He was also scheduled for some testing.  New people and new testing can make me nervous.  Understandably, they can make Ronan nervous, too. 

Ronan got through the first part of the day pretty really well.  Complimented for his patience and how he managed to deal with the intense sensory overload one of the tests caused him, the nurses and the doctors we encountered remained very positive and very patient-centered.  Speaking to Ronan, showing him the equipment they were going to use, and asking him for input knowing that he would not respond, they made Ronan as comfortable as they possibly could.  I was pleased.  Other families we saw coming in and out of the exam rooms that morning also looked pleased.

By Cathy Jameson

In an October 2020 post, I wrote, “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.”

A recent paper, which included results of the fear of contagion and its behavior, focused on a younger population.  Authors of that paper, which was revised in October 2022, shared that, “The main conclusion reached by this manuscript is that, as the existing specific literature has already shown, COVID-19 has had different negative psychological consequences among certain vulnerable groups, including adolescents and young adults. The results presented allow us to verify, within these psychological consequences, how the symptoms of generalized anxiety or major depression disorder are a consequence of the fear of COVID-19.”  

It's terribly sad to see reports that people are sadder now than they were before.  From a recent story in The Washington Post, Joel Achenbach asks America shut down in response to covid.  Would we ever do it again? It’s a quick read if you haven’t seen it yet.  The part that resonated the most with me was this:

…the pain of the national shutdown - businesses going under, weddings postponed, protracted isolation of the elderly, learning losses among schoolkids - is glaringly obvious.  Critics of pandemic restrictions contend that the cure was worse than the disease…

Plenty of us here might agree with that – the cure was worse than the disease.  While many could recover from the illness itself, we have no idea what the long-term effects of the restrictions ands lockdowns will have on us and on society, too. 

As far as some of the pain that Achenbach mentions, I see the academic struggles in students now three years later.  I hear of the businesses still wrestling with financial losses, and I see professionals dealing with a wave of undertrained or less-than-motivated employees post-lockdown also.  Where I can see a few outcomes that could be considered positive, like having more time to spend with family when places were closed, I still can’t believe that the lockdowns happened.  

As time went by, we faced new fears. 

In facing those, we learned who we could and who we shouldn’t trust. 

In learning that, we still had to manage more unknowns. 

Those unknowns caused moments of grief, and for others, instilled more fear. 

I’ll never wish for a lockdown again.  On paper, it may have sounded like a good idea.  In reality, the long-term effects are proving more devastating than some ever thought to consider. 

Cathy Jameson is a Contributing Editor for Age of Autism.

An Enemy of the People

In his foreword, Kennedy alerts readers to the undeniable fact that the persecution of those who tell uncomfortable truths, which Ibsen described over one hundred years ago, continues to this day and is as relevant now as ever. We face environmental deregulation and degradation, politicians in lobbyists’ pockets, attacks on facts that are agreed upon by reputable scientists, corporate funded and controlled research, and attempts to impede and suppress whistleblowers. The battle continues and Kennedy joins Ibsen on the front lines.

ROAR by Bruce Wagner

The myth of an epic, public life—its triumphs and tragedies—is a particularly American obsession. ROAR is a metafictional exploration of such a life and attendant fame of an extraordinary, and completely made up, man.

By Cathy Jameson

A few times now when I'm scheduled to leave the house later than usual, something has happened with Ronan - a fever, a possible seizure (they can happen so fast), or a wonky episode of something worrisome (I don't know yet what to call it).  It happened again one day last week.  Ronan looked confused, held his head, closed his eyes and looked wobbly on his feet.  I was worried, since it – whatever it was, came out of the blue. 

While getting him off his feet and to the couch, I sat next to him, ready to administer emergency seizure medication, should it be a seizure.  I was ready to clean up throw up, should it have been an upset tummy rumbling.  But Ronan, who could only grip my arms as I reached out to hold him, laid on the couch and drifted off to sleep.  He ended up taking two naps, even though he’d had a great night of sleep. 

The day that happened, I wasn’t scheduled to leave the house until 1:00. 

The time before, he was also wobbly on his feet and knew something was different – but couldn’t express anything but a worried look on his face.  Ronan had woken up that day and was fine but then wasn’t.  That day was the first day that my work hours had changed, and I happened to be home.  Both times, I didn't know it, whatever it is, was going to happen, but God knew I needed to be with my bud.  I got to hold his hand, to calm his nerves, to settle him quickly, to watch him quietly fall back asleep to witnessing him wake up refreshed as if nothing worrisome or wonky had just happened.

I’ve spent the last few days trying to figure out what triggered the odd episodes.  We haven’t changed brands of foods he and I have for breakfast.  The supplements taken are the same as always.  Other products found in a home – laundry soap, dish soap, bath soap and more, are all the same.  Granted, we had the huge medication fiasco a few weeks ago, but this happened while on generics and since he’s been back on his regular doses and brands.  I joked with a friend when I knew I’d be home all morning again, “I hope nothing happens to Ronan while I’m home past lunchtime!”  All joking aside, it’s just so odd and definitely something I definitely need to track. 

I was thankful I was home both times.  I truly felt like I was at the right place at the right time. 

Another time, I was thankful for something that wasn’t supposed to happen.  It was more of a wrong place, right time sort of story (and has nothing to do with the recent events)…

A right place, right time moment usually leads to something positive.  A wrong place, wrong time moment has usually led to a negative outcome.  A few years ago, I had a "wrong place, right time" moment, and I'm glad that I did.

By Cathy Jameson

We’ve been hooked on the show, The Chosen since it aired.  If you’re not familiar with it, it’s a series that highlights stories found in the Gospels, stories in particular of the disciples chosen by Jesus.  The first few episodes of Season 1 were a bit slow, but we soon couldn’t wait to see what would happen in the next episode.  When Season 2 became available, we found ourselves running to the den to get a seat on the couch right before the show aired.  Season 3 just debuted a few weeks ago and proved to be the best season yet.  I won’t give too much away, but if you’re familiar with stories from the Gospels, you already know that Jesus was a miracle worker. 

It would be obvious that some of those miracles would end up being showcased on The Chosen.  I hadn’t thought to prepare myself for the more recent episodes that featured some of the miracle stories.  Honestly, I didn’t think I needed to.  Those stories are ones I’d read and heard since I was a young child.  Watching them, though, especially this one, wrecked me. 

https://www.youtube.com/watch?v=CoZ_Qe1nQWY

“…to know how to proclaim that you still praise God in spite of this … to show people that you can be patient with your suffering here on Earth …hold on a little longer, and when you discover yourself finding true strength because of your weakness, and when you do great things in my name in spite of this, the impact will last for generations…”

That scene with Little James had me bawling like a baby. 

It made an emotional impact on me other and other people as well, including for Joni Eareckson Tada and Nick Vujicic.  Both have unique stories of their own.  Because of their very unique stories, both individuals have positively impacted many other people’s lives.  And each has expressed that they, too, were moved by the Little James scene.  

By Cathy Jameson

The good news is that the medication we were so desperately waiting for finally arrived.  The even better news is that Ronan fared better than I expected as the long weeks of waiting dragged out.  During that time, I dreaded making additional calls to the specialty pharmacist.  I hesitated to send more emails to the nurses while waiting for updates on the medication delay.  It was important that I reached out, even though the news remained completely gloomy from mid-December to early February. 

It was the first time in a very long time that I was not feeling my usual hopefully ever after self. 

As the expected date of availability approached, I reread my notes.  Since the beginning of the ordeal, Ronan’s script had been changed and sent to multiple pharmacies.  We did that thinking that someone, anyone at one point, would have the name brand meds on hand.  From our community to each corner of the United States we were told no, the name brand supply was gone.  While trying to go the traditional route to fill the prescription, others thought outside the box for me.  People offered to go out of country and find the pills elsewhere.  Others, while traveling overseas on other continents, thought to do the same.  I’ve shared already how floored I was that friends and complete strangers leapt at the chance to help my son.   

I’m beyond grateful still that they thought to do that.

Since the medication arrived on February 9^th, a few days earlier than originally expected, a friend shared that she’d gone to Lourdes.  She specifically prayed for us and for the very special intention we asked others to pray – that Ronan’s medication get to him without any further delays.  She included another intention we were praying at the same time – that we find a suitable replacement for our caregiver who’s moving onto a new job.  I wasn’t aware that this friend had traveled to Lourdes, a pilgrimage site in France, but the time that she was there coincides when the medication issue was resolved.  It also corresponds to when we met and offered the caregiver position to an ideal candidate who came with the highest of recommendations. 

Switch my feelings of being floored to experiencing indescribable joy.

By Cathy Jameson

At an event the other evening, I met a woman who is pregnant.  Out of about 180 people there, she was the only one pregnant.  I’d seen her before at other events but had yet to find a moment to introduce myself.  That evening, our paths finally crossed.  I’m so glad they did.  She has 2 young children also.  When they are altogether, she, the children, and her husband look like the perfect family. 

While our paths finally crossed, we were really only able to quickly introduce ourselves.  Had we had a chance to chat more, I’d have asked how many months along she was.  I’d have asked how she was feeling because I’d only just realized about 3 weeks ago that she was pregnant.  The same time I noticed that, my youngest also noticed.  Smiling, she said, “Mommy!  Another baby!” 

Ten more fingers! 

Ten more toes! 

I agreed that it was exciting to know that their little family was growing. 

I’ll hope our paths cross again and that we have more time to chit chat next then.  When I feel the tug to talk to mamas-to-be, past experiences tend to crop up into conversations – both theirs and mine.  When those crop up, I get to share the joys of motherhood.  Inevitably, and especially when the Holy Spirit is involved, I get to talk about Ronan.  Before I even realized she was pregnant, I had hoped we’d become friends.  With a new child coming into this very busy world, I’d love nothing more than to share that moms have options.  I’d share that some babies don’t need everything medical practices offer.  I’d ask that she read, read, and read some more.  Thinking of those things reminded me of an old post I’d shared a few years ago. 

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

…ten little fingers

ten little toes

a new one to love

with a small button nose

skin that’s soft, pink and new

love so strong

from me to you…

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

While it was originally written as a Mother’s Day reflection, the post crossed my mind right after the young woman and I finally got to meet.  Here it is again in case you want to share it with another mama-to-be in your life.  I’ll pray that all the new moms and dads have a plan to keep their babies healthy, safe, and surrounded by nothing but love.  

By Cathy Jameson

It doesn’t feel like we’ve tiptoed into 2023.  Some days, it feels like we’re barreling through it.  It especially felt like that when I flipped the calendar page from January to February last week.  When I got an action alert from the NVIC last week also, I knew for sure that time was flying by.  The type of email they send this time of year means that legislative season is under way in my state.  Curious about which other states were also in session, I was floored when I looked at the map. 

Screenshot from NCLS.org

I’ve written about this topic several times but had completely forgot how many states are at work right now. 

Quite a few are!

You know what that means?

Across the country, representatives are talking about all sorts of topics that will affect all sorts of people – including you and me.  It also means that vaccine bills are back.  Unless you subscribe to an outlet, like NVIC, that reports on vaccine-related legislative issues, some people may not know this. 

Take a look at the most pressing bills NVIC has shared in their advocacy portal.  Two things jumped out at me when I saw the current concerns:  prior session vaccine legislation in Washington, D.C. rolled into 2023’s session with the push for B24-0942. And check out how many bills are were proposed in the commonwealth of Virginia!  The time to speak up there is now.   

[To get an idea of what’s going on locally in your state, and not just about vaccines, search the LegiScan portal.]

By Cathy Jameson

If you’ve been following the saga, praying about the issue, or are just curious about whatever happened with all of the things I was so worried about in December, here’s an update.  That’s how I started a post to family and friends midweek last week.  Since so many in our community here have reached out about the recent issue that’s still not fully resolved, I want to share the update here as well.  Edited just a tad, here is more of the story…

We finally got name brand Lamictal late last week!  It wasn’t the right form of the medication though.  Does that matter?  I don’t know.  Ronan had been taking the disintegrating tablets, not the non-disintegrating tablets we were sent, nor in the tablet dosage that was sent.

While we waited so desperately for the name brand, Fiona - Ronan’s big sister and future Biologist, helped me create a spreadsheet.  It tallied the dwindling supply of the disintegrating name brand tablets we had on hand and the cheaper, generic pills we were told to use.  Even with her very well thought out calculations, I was apprehensive when the day came to mix the meds.  Since adding in more of the generic, Ronan’s been napping a tiny bit more than usual, he’s been a lot more drool-y, and yesterday, he put himself back in bed within half an hour of being awake and slept for about 2 1/2 hours.

You cannot tell me that the generic comes without risk.

Look at the price difference.

It is astronomically different!

Don’t forget, unless I forgot to tell you, we have had two medications switched to generic form recently.  The second one also had some supply issue problems that caused delays.  Ronan had been on the generic of that medication a little bit longer, so hopefully we’ll see some improvement now that we have the correct form.  The pharmacy manager at the specialty pharmacy went to bat for us and overnighted the correct form of the second medication just this morning.  I’m not sure what strings she had to pull or what strong words she needed to say, but she was able to override all the red tape within hours.  Insurance had to be put in its place, so thank you Miss A. for kicking some major butt for my kid!

By Cathy Jameson

I recently shared that our main caregiver is starting a new job.  Like other caregivers who’ve joined Team Ronan, they are actually on a bigger team…Team Jameson. The longer they are here, they become family.  That’s because this person, who has willingly stepped into our home, ends up helping all of us.  I don’t mean doing chores or assisting each of us individually.  I mean that they naturally fit right in.  As each year goes by, the more they get to know us.  The more we get to know them, the deeper the friendship has become.  When something else comes along in their life, like a new job, the loss we feel when it’s time for them to go is great. 

We hate it when the good ones leave, but we always wish them the very best. 

While searching for a new provider these last few weeks, I’ve run into several brick walls.  This week, I looked beyond our community but still came up short.  Many people have offered great suggestions, which I’ve taken into consideration, but I’m still without a reliable replacement.

Without the loving extra pair of hands we’ve grown to love here, life’s been a little bit…scratch that…life’s been a lot out of sorts.  I wasn’t working outside of the home last time we looked for a new caregiver.  This time, I’m juggling different demands and a different schedule, including trying to keep my own part-time hours. 

I love a challenge, but this is proving to be more than a challenge. 

While looking for community college job boards and investigating day programs this week, I thought back to the last time we lost a caregiver to see how we handled it.  Originally written in 2015, we posted the story here 3 years ago.  I’ll use some of the same tips I shared, including asking even more people if anyone knows someone who’s looking for a job.  God knows who we need to join Team Ronan, so we’ll pray that our paths will meet soon.  We’ll also hope that, in time, they’ll become an active member of Team Jameson, too.  

By Cathy Jameson

This was a recent update I shared with family and friends.  It’s not the medication issue that I’d asked them to pray about last month (for that medication, it’s the same status as before…we’re still running out of it), but here was a new thing I asked them to pray about…

For the love of all that is holy and Name Brand ONLY.  Don’t send my kid the generic form when his prescription clearly states he needs name brand.  And don’t let me catch you stretching the truth to make it easy for you when I ask you to read what the doctor wrote.  “The doctor wrote Name Brand Only.”

SO DO THAT!!!!!!!!!!

FYI, the doc wrote it correctly but didn’t add the crucial code.  Words are good but that code! Computers respond to codes, not well-intentioned words anymore.  Without that info, unbeknownst* to a patient, the pharmacy can “legally change it and fill the script with generic”.  

At that point, if I was the pharmacy tech, I’d ringy dingy the doctor and ask, “Did ya mean to leave the code out, or do you wanna maybe fill it in?”

DEAR LORD.

Can we please get a tee tiny break with the meds issues?!

*I beknownst it.  We’ve run into this horrible, worrisome issue before (generic can cause worse issues for Ronan).  Plus, when I called the Rx in on Monday, I asked for the medication by its brand name.  “Yep. Yep, we can send it,” the pharmacy tech told me.  “We’ll have it to you by Wednesday.”  THANK GOD I read labels and package inserts.  I immediately called and let the tech who answered know of the error.  I then asked her to refill the supply with the name brand. 

I was shocked, and actually pretty angry, when she asked me, “Ma’am, can you have him finish out the month supply we just sent?”

ARE YOU KIDDING ME??

No!  Fix it!!

We’re already dealing with a potentially scary med issue.  I, and Rone, don’t need two potentially scary med issues.  I’ve called the doc’s office and will pray that one of the amazing nurses jumps through hoops for us again.

Those nurses.  We love how much they help us. (…had to end this on a positive because I was getting all kinds of stabby there for a few minutes…)

--

As happens when I share a prayer request, people immediately started to pray.  And Ronan’s nurse quickly attempted to fix the latest problem. 

--

I feel absolutely helpless when situations like this happen.  As the parent, I can only do so much.  I am not the pharmacist.  I am not the pharmacy tech.  I am not the insurance company nor am I the delivery driver who will deliver needed medication in a timely manner.  I am the Mom who hopes and prays that things will go only well for my son. 

While that is true, I am also the Mom who will fight like hell to keep my son healthy and safe. 

When I followed up on Friday with the specialty pharmacy, which is a few hours away from us, I spoke to a different pharmacy technician.  She shared that since the insurance covered the generic form that was just delivered, they won’t allow a refill until February 2^nd.  I told her how disappointed I was and blurted out, “Who do I need to fight?”  I was stunned when she said, “The pharmacy manager is working on this for you.  I can ask her to call you when she’s off the phone.”  I quietly answered, “That would be great, thank you so much,” and made sure to keep my phone close by.

Less than an hour later, the pharmacy manager called me with new and hopeful information.

It’s all over Ronan’s profile that he needs and is dispensed name brand medication.  When the doctor sent in the updated refill form with the correct wording at the end of December, the system didn’t ‘see’ the code that pushes Ronan’s name brand prescriptions through.  While everything states name brand medically necessary, the DAW 1 code was missing. 

DAW 1: This means dispense as written; no substitution allowed. [Pharmacy Tech Review]

If it’s left off, the pharmacist can, by law, dispense a generic form – a therapeutically equivalent drug product.   

I’ve heard about that for years, but never thought to look at that law closely.  Today was the day to do that and to tell my family about it.  I oversee most of Ronan’s medical care.  If, God forbid, something happens to me, and my husband or our back-up guardians need to call in a script, they, too, must know to check if that critical wording and code is being used.  

If you also oversee a loved one’s medical care, including managing their prescriptions, it’s important for you to know that “The mandatory substitution and patient consent laws are separate statutes, and each state can choose any combination of the two policy tools.  In any case, the consumer can overrule the substitution, but the laws determine the default option and consent requirements for the pharmacist.”

She didn’t go into all of the legalese, but the pharmacy manager gave me just enough information for me to start a search.  I’m glad she went into some detail.  Before we’d had a chance to talk, I was ready to ask for a patient advocate to assist me or to consider using a tactic my Mom shared in response to my prayer request: 

Long ago, before our world turned upside down, a friend of mine was trying to get treatment. It was legit, insurance allowed, but doc was resistant because in HIS opinion it wasn't needed. My friend, exhausted and ready to stab him with his expensive pen, said through gritted teeth, if I were your mother, would you want her doctor to put her through this crap??

She embarrassed him into submission.

You go, Mama, wish I could give you big hugs.

But I didn’t need to ask for an advocate or for the pharmacy manager to put herself in my shoes.  When I’d asked her if I needed to put my dukes up, she said, “We’ll fight the insurance company for you.  In fact, I’ve already made one call to them and will make another one when we hang up.” 

PRAISE BE!

The problem, though, is that the medication is out of stock, just like the other name brand medication is out of stock. 

“Could you come to us, if I can find it anywhere local, and pick it up?” the manager asked.

“Yes,” I told her.  I’d crawl on hands and knees on shards of glass if needed.

“I may be able to find it at the hospital’s pharmacy,” she shared. 

“Okay,” I said while imagining myself driving up there already.

“Wait!  I think I can get you an 8-day supply.  The systems don’t like to ‘partial control’ the medications because it can potentially mess up what the original script states, but you’d get what your son needs and...” the manager trailed off for a second.

“…you’re eligible for a Saturday delivery, so I can have it shipped to you overnight.  It’ll be to you tomorrow by 11am.  How does that sound?”

OHMYGOLLY!

“That would be so helpful.  Thank you so much!” I replied gratefully. 

While she set up the delivery, I kept the conversation going.  I told her it always seems that these sorts of panicky situations happen at the end of the month, at the end of the year, or right before a national holiday when places shut down for 3 days.  “Oh, that’s right.  Monday…we’re open on Monday,” she shared.  While many Americans will have the day off to honor the late Martin Luther King, Jr., the pharmacy manager let me know that she’d be at work that day.  When she’s there, she said she’d keep looking for the remainder of the month’s supply Ronan requires.  She also said she’d make sure the partial order didn’t reset the order back to generic in the system.  She added one more thoughtful thing.  Should I ever encounter another problem, I am to please ask for her by name.  I told her that’s why we picked her particular pharmacy.  Other places have seen Ronan as a number, or a dollar sign, and never a human.  Where the younger pharmacy techs there could only do so much for me, they don’t have the years of experience the manager has under her belt.  They couldn’t think outside the box as quickly as I needed them to.  I know that my frustration unsettled the one who asked me to just use up the generic we’d just been sent.  I won’t apologize for my snappy response to her.  She needs to know that her suggestion was a horrible suggestion and one that could result in devastating side effects for my non-verbal, medically fragile son. 

This manager, though, had everything under control and in Ronan’s favor within just a few short hours. 

Crisis averted.  Thank the Lord!

For the next time, should there be a next time, I’m now a tiny bit more knowledgeable.  Everything I learn, even after all these years, helps me to advocate for my son a little bit quicker than the last time I had to speak up for him.  It can be overwhelming at times, and I do hate that I immediately feel the need to go into fight mode.  But if I let things slide, Ronan suffers.  He’s already suffered enough.  It wouldn’t be right for me let that happen again.  I can relax a bit today, but dukes up next time if I need to do a little bit more to make things a lot better for Ronan.

Cathy Jameson is a Contributing Editor for Age of Autism. 

 --

Tidbits from that paper that stuck with me after I discovered more information on DAW laws:

“…Mandatory substitution laws require pharmacists to use the generic as a default, and presumed consent laws allow them to assume that the patient agrees to the substitution.  Both situations can be overruled by the patient.

At one time, laws in most states required pharmacists to fill a prescription as written, precluding generic dispensing when the physician had written the brand name. The last of these anti-substitution laws was repealed in 1984.

There are currently two types of laws that regulate a pharmacist’s substitution of generic drugs... The first determines pharmacists’ options when they are filling a prescription for a brand name drug. Some states require mandatory generic substitution, and others are permissive to pharmacist discretion. That is, in the mandatory substitution states, the pharmacist must default to the generic version of a multi-source drug, and in the permissive states they have the option to substitute, but it is not required. While this law determines if the pharmacist has discretion over generic substitution, both forms of the law allow the patient/purchaser to overrule the substitution. The second type of law determines if the patient’s consent for substitution is presumed, or if it must be explicitly acquired. In a presumed consent state, the pharmacist can substitute without informing the patient. This law regulates whether or not consumer consent is required for substitution, but as always, the consumer maintains their right to overrule the substitution. 

As expected, the generic drugs are substantially cheaper for consumers. 

In reality, a patient’s consumption of prescription drugs is a joint decision determined by both the physician and the patient. 

When explicit patient consent is required, the patient is given a clear chance to persist with their preference, rather than substitute, as the pharmacist and payer of the drug costs would have wanted them to do.”

--

More DAW codes to know, also found on the Pharmacy Tech Review website:

Ed Dowd's Cause Unknown can't be updated fast enough as we see a steady stream of sudden heart attacks and deaths in the news. Dr. Robert Malone's Lies My Government Told Me and the Better Future Coming speaks to the power of action and personal growth based on knowledge.  See you on Sunday with Cathy's post.

Cause Unknown Hardcover
Kindle Edition

Lies My Government Told Me Hardcover
Kindle Edition

By Cathy Jameson

I shared back in November that my husband and I got to go Up, Up and Away.  At the end of that post, because Ronan had gotten sick unexpectedly while we were gone, I asked for prayers for another trip we had planned. 

I’ll pray that the upcoming trip we have planned together is a success.  I’ll pray that Ronan and the kids will be just fine this next time also.  I’ll pray thankful prayers in advance for the people who’ve offered to help us watch the kids.  If you’d like to pray with me for all of that, too, I’d be so very grateful.

That next trip was something we were both very much looking forward to.  Gifted to go away, it would take loads more planning.  It would take needing to ask for extra help from friends.  It would take using a passport also.  My husband and I were invited to a Christmas party in Germany.  I haven’t been to Europe since 1999, so of course I wanted to go!  Since it sounded crazy to go that far just for a party, we decided we’d make at least a long weekend out of it.  But could we still manage that, especially after the worrisome texts we’d received as soon as we landed on that last trip? 

We wouldn’t know if we could manage it unless we went. 

After very, very careful consideration – and knowing we’d be blessed with two caregivers willing to look after the kids, we got ready for an overseas adventure.  As we prepared to tippy toe out of the country, I could hardly contain my excitement!  We’d both made lists of things we hoped we’d get to see, and I couldn’t wait to just be there at those sites.  I had a few absolute must see places.  My husband, who for years has gotten to travel the world for work, had some definite musts also – places he’d already gotten to tour but had always wished I could’ve been with him. 

With that list in hand, I took time to find the best route for us to take.

While looking at which airlines we could afford and factoring just how little time we’d be in country, I was excited to see that an Aer Lingus flight could get us to our destination.  Their flights were hundreds of dollars less compared to other companies flying the same route.  A little skeptic, I did some extra reading and looked up customer reviews to see if the lower airfare meant lower quality travel.  Some customers loved the airline, absolutely loved it.  Others hated it.  Before purchasing, I looked at recent flight history and could see that yes, some flights were delayed.  Some luggage was misplaced.  Some customer service calls were unfortunately dropped.  But so was all of that true for the other airlines I’d been looking at.  Getting tickets to Europe would be risky no matter which carrier we flew. 

So, Aer Lingus it was!    

Lately, when we travel, we’ve booked non-stop flights.  Always considered a luxury because of the cost, I shied away from non-stop flights most of my life.  If you recall, though, summer travel was a nightmare for many Europeans.  I’d started to look for flights when overseas airports were still packed, when many flights were delayed, and with countless connections cancelled.  After years of traveling with the kids and always concerned about layovers with them, I now try to only travel on non-stop flights.  They may be a bit longer, depending on where we’re going, but we eliminate the need to run like crazy people through airports.  We reduce the risk getting stranded as so many other travelers had been when trying to make connecting flights.  It was a no brainer that we’d pick a direct flight for this trip. 

Until I saw that Aer Lingus had stopovers.

A Monday treat - Cathy Jameson has an update on her quest for medication for Ronan. MANY people have reached out with options, ideas, alternatives for Cathy. We embody the spirit of Christmas. Thank you.

###

Prayers Answered, Prayers Continue

By Cathy Jameson

Last week, I wrote about a dire situation – the manufacturer who makes one of my son’s seizure medications informed our pharmacy that they were out of stock of the medication.  I spent most of Friday fretting about that discovery.

All of Saturday, I was still consumed with finding the mediation.  Since it was the weekend, I could only do so much.  Places were closed.  Phone lines went straight to answering machines.  The internet could guide me only so far before I’d need to talk to a human.  Unfortunately, the ones I needed to speak to directly wouldn’t be back at their phone lines until the work week resumed. 

Monday morning couldn’t come fast enough. 

We still had Sunday to get through though. 

Then I remembered something hopeful.   

We know a couple who help run a free medical clinic!  As I got ready for Mass on Sunday morning, I thought maybe they would have some advice about what I could do.  The Holy Spirit definitely guided that thought because as I entered Church that morning, that couple was sitting in the pew on the same side of the church where we like to sit!  Kneeling before Mass to say some prayers, a wave of relief fell over me. 

Then I made a mistake. 

My mind was all over the place that weekend, including during Mass. 

Then there were donuts.

By Cathy Jameson

On my birthday and at Christmas, the kids ask me what gifts I want.  Every year on my birthday and at Christmas, I say that I want a nap and for someone to make me lunch so that I don’t have to make it myself.  The kids laugh, “MOM!  No, really.  What do you want?”  Truly, I’d love a nap, but I tell them that whatever they want to give me (hint hint, dark chocolate) would be wonderful. 

Last week, specifically on Friday at 4:27pm when the doctor’s office was about to close for the weekend, I wished for something else—I wished that Ronan’s seizure medications would be filled correctly and on time.  The kids wished for that with me as well.  In fact, they had prayed for that special intention the night before when I shared that we were facing a potential problem filling one of the prescriptions. 

Thursday morning, I’d called 12 local pharmacies asking for their help because the specialty pharmacy we have been using (and love) shared that they couldn’t help us this month.  The manufacturer of the medicine is out of stock.

“Call around.  See if any has the drug on hand, on their shelves right now.  We can transfer the script to them right away if they do.” 

One by one, each of those 12 pharmacies said, “Sorry, no.  We don’t have it.”  Each one shared the same message we’d already gotten – the manufacturer is out of stock, and no expected date of availability or delivery has been given. 

Later that evening, right before family prayer time, Izzy asked quietly, “Mom, if the company doesn’t give us the prescription, can this cause something worse for him…like death?” 

I wasn’t surprised that her mind went there.  Mine had, too. 

“Oh, sweet girl,” I started, “We’ll hope that it doesn’t come to that.”

By Cathy Jameson

I have some pretty smart friends.  One group of patriotic friends helps keep me updated on current news here and abroad.  We’ve chatted about lots of topics over the last year, to include political news and also covid-related information.  One day last weekend, college covid mandates came up in our group chat. I jokingly said, “They’re still playing that get vaxxed or else game?”  

It was no joke.  Colleges still are requiring the vaccine and boosters.  

Several days later, news of Yale’s latest mandate for the Spring 2023 semester quickly made headlines.  In that same group chat I’m in, one of my friends shared a link to Dr. Naomi Wolf’s passionate response to Yale’s announcement.  Her message to her alma mater is very clear - cut the crap.  

Withdraw the mandate. 

Protect the children. 

Now.  

Dr. Wolf cites what other parents have expressed - this is coercion.  This is a violation.  This, all of this, is wrong.  Data shows that what colleges are doing is potentially harmful to students’ health, to include negatively affecting women’s reproductive health.  But schools, and businesses also, still aren’t listening.  Neither are the manufacturers.  

Instead of slowing their roll, it’s full speed ahead for those who may financially benefit from the vaccines. 

College can be expensive already.  It should never cost one’s life though. Those who are unwilling or unable to fight the latest mandate may end up paying an extra price for their education - physically or psychologically.  Physical risk may come in the form of an unfortunate side effect.  The coercion and exploitation felt could surely cause some damaging psychological effects, too.  

The future looks bleak for students whose colleges are in fact playing the covid vax game.  It is my wish that those who can fight the fight will do exactly that.  May their efforts be heard.  And, like my patriotic friends provide to me, may these students be guided by light and truth always. 

Cathy Jameson is a Contributing Editor for Age of Autism. 

The Truth about Wuhan: How I Uncovered the Biggest Lie in History

By Andrew Huff: The day that Dr. Andrew G. Huff left his senior scientist and vice president role at EcoHealth Alliance was one of the happiest days of his life due to the corruption he had witnessed at the organization. However, he never thought working there would be of any great consequence to the future. He was wrong. Because, as an EcoHealth Alliance insider, Dr. Huff had had a ringside seat to one of the biggest cover-ups in history. 

By Cathy Jameson

I had a few extra minutes to myself on Friday morning.  I’ve been hoping for some extra time in my week to get a few things done.  Sorting through some paperwork, catching up on laundry, writing out some lists—they aren’t major things, but they are adding up.  Having extra time to get to at least one thing completed was exactly what I hoped for and got that morning.  But first, breakfast.  While eating, I decided to scroll through Facebook.  

I felt awful after. 

Not because of what I ate.

But because of what I read. 

Longtime advocate Karen Kain had posted a link https://www.habingfamilyfuneralhome.com/obituary/michael-mike-granata that caught my eye.  I don’t usually read stranger’s obituaries.  As sad as it was, I’m glad I decided to click on it. 

If you feel moved by what he shared, please forward his link. 

With all that we’ve learned.  With all that we’re witnessing.  With all that this family will continue to suffer, it’s the least we can do. 

Cathy Jameson is a Contributing Editor for Age of Autism.

###

Lies My Gov't Told Me: And the Better Future Coming (Children’s Health Defense)
A guide for the times—breaking down the lies about COVID-19 and shedding light on why we came to believe them. 

By Cathy Jameson

On weekends, my husband and I have a simple routine - whoever wakes up first gets Ronan ready for the day.  That means taking him to the bathroom, getting him changed, and giving him his meds.  While one of us tends to Ronan, the other gets a bit of a break to ease into the day.  It’s a sweet relationship my husband and Ronan have.  Father dotes on son.  Son looks up to father.  They don’t need me to intervene or butt in the way of their weekend routine.  One recent morning, though, when I got up later than my fellas, I hadn’t heard Ronan take his meds.  

--

Sausage, eggs, a gluten-free waffle and a cup of coffee - it’s a breakfast I make almost every day.  Ronan gets the same, sans the coffee.  He’d been awake for about 15 minutes by the time I’d gotten our meals ready last Sunday morning.  Assuming my husband had already gotten Ronan his morning meds, I hovered over my chair just about to sit down to eat.  I hadn’t gotten a good night of sleep the night before and was less than chipper that morning.  So, I blurted out, “I assume he’s just waiting for his meal, right?”  My husband apologized and said, “No, he still needs to take the meds.”  

Grumbling, I sat down and then stood back up saying, “I’ll do it.”  

Looking at me shocked, it was my turn to apologize. “I’m sorry.  I’m just really hungry.  I can do it.”

Feeling frustrated, and embarrassed that I’d been a bit put off, I got Ronan what he needed.  Since we have to feed him his breakfast, which can take about 20 minutes to do, I quickly gobbled up mine first.  It felt like a selfish move in the moment, but on days that start off on the wrong foot like that day had, I thought it best to try to take care of me before I attempted to take care of Ronan or the other people in my life.  

Ronan takes up the most of my attention.  

He always has. 

By Cathy Jameson

My husband and I had the opportunity to jet away last weekend to attend a gala in Texas.  We’d just gone to a dinner hosted by the same non-profit group a few weeks prior, but it was at a local venue not too far from home.  With how much we have going on, we always look forward to going out on dates when those chances pop up.  We especially like going on away dates when we can find an overnight sitter for the kids.  My Mom would be available to keep eyes on Ronan and his siblings for the 29 hours we’d be gone, so off we went. 

When we’d gone to the local event, Ronan’s siblings watched him.  I almost didn’t get to go to that evening dinner because Ronan hadn’t been feeling well the day before.  He had a low-grade fever and was very tired.  Even though the fever had broken, he was still more tired than usual.  Ronan doesn’t tell us when he’s hurting, but when we see changes in his behavior we know something isn’t right.  I’d already decided that I wouldn’t join my husband at the local dinner.  But as quickly as Ronan’s fever came on, it went away.  With no other worrisome symptoms, I changed my mind just minutes before we’d have to leave.  Darting into a dress and heels, I got to join my husband at the event for a few hours. 

Keeping in constant contact with the kids that night, it was a good decision to go.  This would be the first time this group met in our area.  While there, we mingled, we met new people, we reconnected with friends, and we thoroughly enjoyed ourselves supporting the organization as it established itself in the local region.

By Cathy Jameson

While looking through the news late Thursday afternoon, I saw an article about Tylenol. 

I had meant to read more about the topic after seeing this link a few months ago.  Life got busy with the kids’ school year starting, and I’d forgotten to take time to check it out. 

Those two articles brought back awful memories.

While the recent news stories don’t mention an acetaminophen connection to vaccines, I won’t be surprised when that information is acknowledged.  For many, it’s been a go-to pain reliever for all ages, including for babies post-vaccination.  

I’d obediently given the name brand Tylenol to my children when they were very young.  That’s because our pediatrician at the time had provided me with free sample bottles of the drug at vaccination visits.  Thankful not to have to buy it, I followed her directions at those ‘well-child’ visits – “Give it to the baby when you get home.  If they’re fussy later, give them a second dose.”  

I know many other mothers who followed the same orders from their pediatricians. 

My children’s early childhood years are now but a memory, but I still cringe when I see chatter about Tylenol making the rounds in online parenting circles.  In the past, a blanket statement from officials usually followed that chatter: 

Don’t panic, the experts tell worried parents.

It’ll be fine.

In fact, it is fine.

Read more after the jump

Note: Our Matching Gift Fall Campaign is in full swing. Please consider a tax-deductible donation. Paper: Autism Age, PO Box 110546, Trumbull, CT 06611 Thank you.

Donate

By Cathy Jameson

A breeze whipped this way and that as I drove through my neighborhood one morning last week.  I loved seeing the colorful fall leaves as they danced in the air in that breeze.  I continued to smile as I slowed down near one of the main roads.  Before I turned onto that road, I tuned out the news I had been listening to and glanced to the left of me.  A family was sitting outside enjoying the fall day.  Two children in cozy sweatshirts, pre-teens if I had to guess their ages, were happily tumbling down a hilly front yard.  Their parents laughed as the kids rolled and rolled.  Seeing them reminded me of something I said when I saw a big hill last weekend, “Wouldn’t it be fun to roll down it like a kid again?” 

Wheeee!!  

Changing the channel of the talk radio station as I drove passed the children, I stopped smiling.  An advertisement, sponsored by Pfizer and BioNTech was on again.  Every few hours, every single day, it’s the same sponsored ad:  Get vaccinated!  Get boosted.  Covid is still here.  And it’s not going away…  

Neither are these annoying commercials going away, I thought.  

I grumbled as I found some music to listen to instead.  

Later that afternoon, I had a doctor’s appointment.  It had been months since the last time I thought to bring a mask anywhere with me, so I was completely taken aback when I saw a sign on the front door.

WEAR A MASK

I didn’t have a mask. 

So I walked in without one. 

Heading toward the receptionist, I saw another sign.  It was still demanding but with a cutesy drawing:  

Bee safe.  Bee kind.  Wear a mask.



(There WILL be a cute photo here if TYPEPAD ever works out the kinks in their media upload!)

That’s so last year, I said to myself as I looked around. 

I was happy to see that other patients had been unaware of the mask request as well.  When I’d made the appointment two weeks ago, the scheduler failed to inform me that their practice was holding onto a covid protocol that many other places have dropped.  I may have considered the request had a mask been provided when I arrived to their facility.  I would have taken the request a bit more seriously, too, had the employees worn their masks over their mouths and their noses.  But when I encounter a ‘rules for thee but not for me’ attitude, I can’t and won’t feel the least bit guilty about not going along with the request.

Note: Our platform provider has been having technical issues with media uploads, so our photos are missing or wonky. We hope for a solution ASAP. The photos are often the fun part!

By Cathy Jameson

For today, I wanted to write about a news story I heard on the talk radio station. It was all about the Halloween candy safety tips, to include trusting the FDA - experts in food safety.  Truly an on-topic topic in our community, I changed my mind about what to write.  That's because the next day, a friend sent a link that was much more terrifying than encountering botched Halloween candy. ENTER IF YOU DARE.

Watching the link, a trailer for a soon-to-be streamed documentary, I gasped. I’ve heard of the phenomenon, but have shied away from diving into it. It’s a worry, for sure, because close family and dear friends have opted - or were forced into taking the vaccine.  Even so, I wasn’t ready to see video of people dropping dead, seemingly out of the blue.  It’s always important to know the pros and cons of taking a medical product, but I still didn’t know if I’m ready for all of the information. 

Someone wants people, including me, to know though. 

Died Suddenly, The Movie 

If you’ve recently lost someone who died suddenly, my condolences. My heart aches for those who didn’t know this might happen. 

Whatever you call it, the jab, the clot shot, or simply the fastest tracked vaccine, could this died suddenly be a true side effect, or is it simply just a coincidence people are experiencing? What do you think? Have you been brave enough to read all about it? As terrifying as it is, I know that I really do need to read more about it. 

Cathy Jameson is a Contributing Editor for Age of Autism.
Note: Our Matching Gift Fall Campaign is in full swing. Please consider a tax-deductible donation. Paper: Autism Age, PO Box 110546, Trumbull, CT 06611 Thank you.

Donate###

Click the cover or title to order:

Profiles of the Vaccine-Injured: "A Lifetime Price to Pay" (Children’s Health Defense)
Are vaccine injuries really “one in a million,” as governments and public health experts constantly tell us? This comprehensive look at the evidence by Children’s Health Defense, illustrated by nine real-life stories of serious vaccine injury, exposes health agencies’ soft-pedaling of vaccine risks as a dangerous lie.

By Cathy Jameson

A friend’s son recently asked me a question.  Like what the other young fella said to me, our conversation stayed with me long after it was over.  We were out to dinner the night this kiddo and I got a chance to talk.  After getting Ronan settled in a seat next to my husband, the only other available chair was at the other end of the table with all the kids.  I’d miss out on the adult conversation but was happy to catch up with the kids.  I’ve known them for years, and they’re really fun to be around.  

Plus, I was happy for a tiny break from keeping constant eyes on Ronan.

While eating my fajita, the friend’s son and I started talking.  He’d watched me make sure Ronan had everything he needed before I sat down.  He’d watched Ronan get settled in and also watched my husband get Ronan fed.  I like to see typical kids quietly observing Ronan.  I can always tell when they are genuinely curious and politely thinking about Ronan and what’s happened to him.  I like it when they later ask questions that are thoughtful, too. 

“Do you like taking care of Ronan?” the six-year old asked.  

Instant guilt hit me as I took a bite of my dinner.  I thought he was going to ask what apps Ronan had on his iPad, or why was Ronan wearing his yellow headphones in the loud restaurant.  Chewing slowly on that bite gave me a minute to formulate an acceptable answer to his weighty question.  

“You know what, buddy?  It’s a lot of work to take care of him, and I always hope that I’m doing it well.”  He nodded his head, but I could tell he wanted a more precise answer.  He wanted a Yes, I do like taking care of Ronan, or a No, I don’t like it kind of answer.  He did not want a vague holy moley, I’ve never been asked that question before kind of answer that I’d just given him. Read more below the jump.

Autism Age, PO Box 110546, Trumbull, CT 06611Our EIN is 47-1831987
Donate

By Cathy Jameson

I saw a young boy a few months ago at a picnic.  We’ve had some ‘in passing’ conversations since then – a quick hello, how are you doing, it’s nice to see you again kinds of small talk.  Ronan hasn’t been going to church with us lately, but, last week, the boy remembered seeing him at that picnic. 

While in the parking lot waiting for my daughter after a game one day last week, the boy, who’s about 7 years old, saw me and said hi.  He asked what we were doing, and I told him we were going to go home since we couldn’t stay for the next game.  “It would be too much for my son.”  He very quickly replied, “He’s the one who was in the yellow headphones who was in the wheelchair.” 

Taken aback, I said, “Wow, yes.  Good memory!”

I continued, “It’s actually a stroller that Ronan uses when he gets too tired to walk.  But, yeah, that’s my son.”  I then gave the boy a little more information about why Ronan had those yellow headphones and why he sometimes needs that stroller.  “When he was much younger, he could do things like other little boys could do.  But then, Ronan got sick.”  I shared just a few things that happened to Ronan then and added, “Ronan is non-speaking now.” 

The boy’s sister was with him and had tons of little kid questions, like Can he say anything?  How did he get sick?  Is he okay now?  Since I don’t know their family very well yet, I answered each question with very simple facts and also kept the conversation very G-rated, meaning no talking of vaccines.  The boy had stayed quiet while his sister and I were talking. 

The next day, I saw the boy again.  “Hey there!”  I happily greeted him.  His greeting had a different emotion than mine.  “I feel bad for Ronan,” he told me with sad eyes.  Completely taken by surprise, I said, “Oh!  Why, buddy?”  I had spared him lots of details, like that we saw Ronan decline most after vaccinations, but I could tell what little I did share the day before had really affected him. 

“Well, he…” the boy started, “…he can’t talk and do things by himself.  What if he wants to tell you something?”  I told him, “You’re right.  Ronan still can’t do some things, but remember when I said Ronan can communicate?  I shared that he can type, and he can use sign language, and he can write with a pencil, and he can show us things that he wants.”  Quietly, the boy nodded his head and said, “Y-e-s, I remember.”  Still, the boy’s eyes told me that he was quite moved knowing that my son couldn’t do things the boy could easily do. 

My next words needed to be encouraging. 

“Ronan is a pretty happy kid.  We keep him safe and as healthy as we can.  When Ronan pops into your mind, like it did just now, maybe you can say a little prayer for him.  Or maybe you can say a little prayer for the person who’s helping him.  When you see me without Ronan, it’s because he’s being taken care of by someone else.  It would be so neat if you could say a little prayer and ask God to bless Ronan or bless our helpers.  It’s because of our helpers that we’ve been able to keep Ronan happy and healthy, too, and I’m so grateful for them.” 

It was a big ask, but the little boy said he could say a prayer. 

Knowing I’d captured his full attention, I continued, “And maybe you can add a thankful prayer for what you get to do, too.  You get to do lots of pretty neat things, don’t you?  You get to go to school, and play with friends, and go outside and explore new places.  Don’t feel bad that Ronan can’t do that stuff, but be thankful that you can do what you want to.  I think that it’s a really good thing that you’re able to things.”  Without saying anything, he nodded.  Then as quietly as he had approached me, he turned to walk away and said, “Okay…bye, Mrs. Jameson.” 

I thought I sounded convincing, but time will tell if I helped turn this kid’s frown upside down.  I’ll look forward to our next meet up.  I’ll wonder if the boy will tell me that he thought to pray for my son.  I’ll hope that he’ll share that he’s gotten to do something amazing.  I’ll also say a little prayer myself.  I’ll pray that he’s one of the kids who, when he grows up, will make the world a better place for a child like mine. 

Cathy Jameson is a Contributing Editor for Age of Autism.

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

Profile Pic on the Autism Ages Insta

By Cathy Jameson

Kim shared that Age of Autism has an Instagram page.  How exciting!  I used to post on Instagram, but I’ve gotten too busy to keep up with my personal page.  I am so glad Kim has time to manage each of our AofA social media pages with fresh content.  If she ever needed new photos to post on AofA’s new page, I think these are insta-worthy.  I like that each of them comes with a story—some yet to be written down. 

Several Christmases ago, we had a terrible bowling incident.  These next two photos document a more recent bowling game that came with no injuries.  

Ronan’s siblings took those bowling pictures of us.  The kids give me such a hard time when I sneak the camera out at Mass to take photos.  I know it’s not the most reverent thing to do, but….look at that photo of Ronan reading along!  I love that I can snap his progress in church, one of my favorite places to be.  

Sometimes it’s the little things that make my heart melt.  Other times, it’s the very big things that have me beaming.

NOTE: Our Typepad platform had tech issues yesterday. If this post looks wonky, that's why, and we'll fix it as soon as able.  Thanks.

By Cathy Jameson

I had a different idea for this week’s Sunday post, but after scrolling through FB on Friday evening I changed topics.  

Joshua Coleman has been an advocate in our community for several years.  Dad to a son with vaccine injury, he took his advocacy, and his talents, to the streets with V is for Vaccine.

When able, Josh records his efforts and quickly shares what he’s learned with other.  I’ve always appreciated that about him.  While I stay home taking care of my family, Josh and hundreds of other advocates have shown up.  To the state capitol.  To Disneyland.  To Broadway.  To the races, national conventions, and more.  I’ve gotten to watch a few events as they were livestreamed.  Standing in solidarity, sometimes in silence, it’s incredible to see.

When I’ve missed a livestream, I can’t wait to watch the recorded video later to see who was there, to hear what was said, and to also thank God for the bravery of those present.  Some of those videos can be found here. Parents For Healthcare Rights - YouTube If you're Joshua Coleman, your photos and videos are very creative and informative.  They feature parents, supporters and the public.  They have been shot at small events and at blockbuster venues.  Those who partake in the rallies have made local headlines and have even found their way onto news segments in mainstream news. 

Uploading videos to the YouTube platform is commonplace, unless you're someone like Joshua Coleman though.  Before his work is completely removed, head over to his channel and watch what he and groups like V is for Vaccine have done.  Josh has reported that his videos are now slowly being taken down.  If you appreciate what you see, tell him thank you.  And please consider supporting the incredible efforts these parents are doing on behalf of so many.

Cathy Jameson is a Contributing Editor for Age of Autism.

By Cathy Jameson

This weekend, Ronan's younger brother toured a college with my husband.  A fun guys' weekend away, the campus they were checking out has almost everything on the checklist—the major he's interested in, internship possibilities, (somewhat) affordable tuition, ideal location, and just a bit of a drive away while also being kind of close to home.  One thing would be missing though...Ronan.  

As Willem was packing his overnight bag, I asked, "Got everything?"  

He quickly said, "No, I need Ronan.  I want him to be able to come with us and also to stay with me when I live there."  

Cue the tears. 

Ronan's big sister, Fiona, has shared with us that she’s missed Ronan quite a bit since she's been away at college.  We hardly got to see her when covid restrictions were in full swing on her campus her first year away.  Thankfully, she was able to come home for every break, plus some bonus long weekends, during last school year.  Every single time she came home, she jumped right back in to help her brother. 

That, in turn, always helped me.  

With how giving of her time she was long before going away to school, I encouraged Fiona to apply for a scholarship that crossed my newsfeed.  She and I had worked hard to secure others successfully, so I was excited that she wanted to submit an essay for this one.  It would be a much, much tougher topic than some of the ones she'd written about before, but I knew she'd be up for the challenge.  

The topic?  Autism

The essay?  That second prompt:  

• Tell us about a time that you have had to overcome an obstacle as a person with autism that other people would not have had to face.
• Explain how your loved one’s autism has affected you and how you have adapted to help them.
• Answer this question: What do you feel is the biggest obstacle holding back people with autism today?

Could she do it?  Yes! 

After she sat down to write it, I got a text asking for me to read it over. 

We sent a few messages back and forth over the next few hours as she edited.

By Cathy Jameson

I had the radio on as I drove into town by myself the other day.  Catching up on some morning news, I was quite pleased to hear the radio announcer share that, “Most Americans have turned the page on the COVID pandemic...”  I wanted to high five someone after hearing that.  Another tidbit from the poll was also encouraging. “The public’s perception of personal risk also is a low point, and people are starting to pick and choose more where they deem it necessary to take precautions like masking.” 

Good for them, I thought.

People, lots of people, dropped the masks many months ago.  I know a few who still, maybe out of an abundance of caution, have kept theirs on.  Last week, when an issue popped up that needed medical attention, I made an appointment with our doctor’s office and was sternly reminded to, ‘Bring your mask!!  It’s required to wear one!’  I had bought several washable, fabric-styled ones during the lockdown but could not honestly remember where I’d put them.  I put them away so long ago.  The only time we’ve been asked to wear one lately has been at a doctor’s office. 

Thankfully, we haven’t had the need to go to the doctor too many times. 

The radio announcer continued to another segment after reporting on the Axios.  The weather forecast would be next.  Once on the air, the meteorologist bellowed, “Across the arena, we’ll see some clear skies and lower temperatures!” 

Across the arena. 

Arena?  I’d never heard that term used to describe where I live.  But with that recent poll, and with the ever-constant news of the ever-available boosters, it did feel like I was in some sort of game.  It’s not like the Game of Life I was in, but more like The Hunger Games. 

I love the Game of Life and always look forward to when the kids want to play it.  I don’t love The Hunger Games so much.  When the series came out, I shied away from it.  My fifth child was born the year the first book was released.  I was too busy to read it or get caught up in the hype.  Years later, when the movies came out, I decided to watch them.  I had limited knowledge of the storyline still but knew that it was a sort of survival story. 

Wow, it was more than that.

By Cathy Jameson

I’d just had a short conversation with a young girl who’s in grade school.  A typically happy child, I was sad to see that her usual smile had been replaced.  She’d shared that she’d been disappointed about something and then looked up at me. 

“Mrs. Jameson?” she quietly paused.  “Everything changed.  Why did it have to change?”

Compared to last year, things had changed.  I thought for the better.  In her young mind, though, there’d been too many changes and in a short amount of time.  It was too much for her.  It confused her, it saddened her, and I could see a physical change in her because of it. 

For many districts last year, when the 2021 school year began, students were social distancing, sneeze guards were being used in classrooms, and masks were required by all.  Students and faculty tippy toed into that school year, trying not to breathe too big a sigh of relief.   But for many, it was progress just being in the building.  And full-time, too!  Some teachers were still limited in what materials they could use to teach lessons (i.e., math manipulatives, science lab equipment, shared art supplies), but they, being naturally creative, made things work.   

Other places were not so fortunate. 

Some schools remain closed.  Or were only open part-time.  Or were only open for small groups of students at a time.  Or had kept the intense restrictions that other localities had long removed.  Children, including the ones not affected by those latter protocols, were understandably confused.  The adults were making decisions that didn’t make sense.  My own children have expressed how awful that time was for them. 

“One week we did things a new way, the next week we had to do something else.  They’d tell us to hang on, only one more month, maybe, and then we’d be back to normal.  But that month would go by, and we’d still be waiting for things to go back to normal…or at least to get better. 

It never felt like it would ever get better.”

Cathy has the long weekend off with her family.

By Cathy Jameson

My jaw dropped as I listened to a phone message that came in over a week ago.  It was from a woman who works at an agency that helps us secure services for Ronan. 

“Hi, Mrs. Jameson.  I’m So-and-So from the agency.  In reviewing Ronan’s renewal paperwork, I think I see an error.  I really need you to call me back as soon as you are able so I can go over it with you.  On the form, it looks like you indicated that Ronan was not living full-time in your home.  Instead, it looks like you indicated that he is living in prison.  We cannot continue services if he really is in prison…so, you really need to call me right away because we need to terminate services if his residency has changed.”

Stunned, I hung up the phone. 

Prison?  Are you kidding me?!  Here’s right here next to me!  What the heck did I check off on that form?? 

I’ve made mistakes before, but not one as bad as this one.  Looking at the clock, I realized it was too late to return the call and speak to Ms. So-and-So.  The office was already closed for the day.  I would be able to leave a message, though, and quickly did that. 

Hi, this is Cathy Jameson.  I just heard your message and can assure you that Ronan lives at home.  He has never been in nor has he ever lived in prison.  He lives full-time in our house and is right here next to me.  I’m not sure which box was checked off indicating otherwise, so please, please call me back as soon as you are able.  If I do not answer the home phone, please, please, please try my mobile phone…thank you.

After hanging up, I racked my brain trying to remember when it was that I filled out that paperwork.  It would’ve been months ago.  Think.  Think.  Think!  After a few minutes, I remembered.  I’d received a packet from their office back in the spring and recalled that it was pages and pages long.  I try to keep a copy of every form that we’re required to fill out, so went to my office to hunt down that copy.  Looking through the files, I thought, Wait a minute…I didn’t fill out that paperwork.  I called that information in! 

I had the option to either fill it out and mail it in or call the agency with the information.  Opting to call it in, I waited until all the kids were out of the house.  That way, I wouldn’t be interrupted while I was on the phone.  I remembered that I spoke to a young representative who went section by section with me – together, we updated Ronan’s stats, to include that he lived full-time at home with his family!  If someone on their end messed up my son’s benefits, I would be more livid than I already was.  I could do nothing more about it until I got a call back, so I tried to focus on what I needed to do next – pack for an end-of-the-summer quick trip to the beach. 

Friday morning while driving to Surfers' Healing (which is always one of the best weekends ever for our little family!) we had lots of time to talk in the car.  I told the kids about the phone call and how shocked I was to hear that they thought Ronan was a jailbird.  Can you imagine… Ronan behind bars!  We had a good laugh, but then things got a little bit serious. 

“Will he really lose his benefits, Mom?” one of the kids asked. 

By Cathy Jameson

In the beginning, Pfizer advertised that Science Will Win.  Back in 2020, it sounded like all of Science would work together to overcome the pandemic.  Fast forward to last week. 

It looks like Science doesn’t want to play in the same sandbox anymore. 

Moderna is going after Pfizer, suing them for vaccine patent infringement.  When I heard that news, I immediately thought of two bullies on a playground.  Bullies think they can do whatever they want.  Sometimes they get what they want by force.  Sometimes others assist them in their goal.  Moderna and Pfizer, with the help from the US government, gained billions in a short amount of time.  Countless mandates, encouraged by the government, helped those two companies stay ‘leader of the pack’ even today. 

Pfizer’s Comirnaty brought in more than $36 billion in sales globally last year, and analysts expect it to bring in nearly $33 billion this year, according to FactSet.

Moderna Inc. booked $17.6 billion in revenue from its vaccine last year. Analysts project more than $21 billion in 2022.

Using similar tactics as last year, the government predicted “a pretty sizeable wave of infections” again this fall and winter.  It would not be surprising if both of those pharmaceutical companies’ profits increased.  That’ll happen when updated covid booster get approved. 

The U.S. has a contract to buy 105 million of the Pfizer doses and 66 million Moderna ones, assuming FDA gives the green light.

Even though other manufacturers joined the warpseed-race to create and sell their own liability-free products, like the less popular Jansen and the now-available Novavax,  the now-at-odds pharma giants garnered all the attention. 

The Pfizer and Moderna vaccines deliver genetic instructions for the body to make copies of the spike protein. The lesser-used Johnson & Johnson option uses a cold virus to deliver those instructions.

Note: Dinner. Dinner. Dinner. Dinner ad infinitem.  And when we have special diets - fuggedabouit! Cathy has shared a fun post today with 3 GF recipes.  Mangia!

###

By Cathy Jameson

It’s that time of year when things are starting to get really busy – school schedules, sports schedules, after-school activity schedules – those will be full again soon.  As we gear up for those new routines, I thought back to what helped our nights run better and remembered this post I’d shared with friends and family.  I’ve added a few things to the post, including some links to brands we now use. 

During past school years, when my kids were in grade school, I could get away with last-minute meal prep for my family.  Those times, I would get so busy (or distracted) when 5:30 rolled around, and I'd find myself panicking.  It would be around the same time that my kids' tummies would begin to rumble.  That's also when my typical son, who could happily eat 24 hours a day would yell out, "Hey, Mom!  What's for dinner?"

Dinner?  

He can't be serious, I'd think.  The kid just ate snack...  

I'd slowly glance at the clock and realize...TWO hours ago.  

Oh, no!  Dinner!

Dang it.  

I did it again, I’d mutter to myself.

You'd think that I'd have this making dinner thing down.  I'd been making and serving dinner for our family of seven for a long time at that point.  But, I'd get caught up in something else or lose track of time.  Those nights, it would be a race against the clock to thaw some meat, to figure out what to do with it, and to begin the prep work for whatever sides I thought could go with the meal. 

Happily, none of the food I'd end up throwing together last minute tasted terrible.  Quite the opposite!  They were some of the best dinners I'd ever made and garnered lots of compliments--even from my pickiest eater!  But who wants the pressure of racing against the clock to get a meal on the table with five hungry, hungry hippos underfoot? 

Not this mama. 

By Cathy Jameson 

Kim shared something last week that reminded me of an incident that happened at our house back in March…  

Tuesday night, 9:15pma

I wasn’t going to go to sleep yet, but I just needed to be done with the day.  My husband had been out of town for a while, and I was exhausted from trying to do all the things for all the people.  After family prayers, and as soon as Ronan was tucked in his bed, I told the kids I needed to go to bed, too.  All I wanted to do was get off my feet and watch some mindless television. 

So I did.  

9:19pm 

Pajama time.  

I had just gotten under the covers.  I had just opened my laptop.  I had just started to watch a silly show when Ronan’s younger sister knocked loudly on my bedroom door.  

“MOM, MOM, MOM!”  She was frantic. 

I had just said goodnight to her, so I was not expecting her to come barreling in my room as loudly or as nervously as she did.  

9:23pm

“Whoa, what’s up, honey?  I asked.  

“MOM, the police are at the door.  The police.  They’re at our door!” she blurted out quickly. 

I shot up from under the covers.  When I stood up, I heard the doorbell.  What on earth??  I had heard a faint doorbell chime a minute earlier but thought it was part of a show I was watching - some of the people in the show were sitting in the living room of an apartment.  They were talking about friends coming over, so I thought the doorbell I’d heard were those friends.

Nope, it wasn’t in the show - it was coming from my house!

I bolted out of my bedroom so quickly.  After running past Izzy, I grabbed a sweatshirt, threw it on, and ran to the front door.  The last time we’d needed the police’s assistance at home was years ago - when Ronan wandered one very cold, winter night.  With my heart pounding through my chest, I peeked through the front door window and was startled.  Staring back at me was a very young woman.  I thought I knew everyone on our neighborhood police force–who were all men.  I could see her bullet proof vest, with POLICE blazoned across it, but couldn’t make out much else.  

Who is at my door?! 

By Cathy Jameson

In the mornings, Ronan gets access to the tablet, iPad or the TV but only after he’s changed, taken his meds, and eaten breakfast.  If we don’t get those basic things done, the day can start off on the wrong foot.  So as to get his day, and ours, off on the right foot, we’ve kept this routine for years…  

File this under:  Non-verbal autism can suck it

So many people say, our kids are in there.  They are.  Ronan is fully aware and somewhat abled, yet he is so very delayed and severely disabled.  He needed something today and kept trying to get me to help him.  For the life of me, I could not figure out what he wanted.  

Before he got frustrated, which can happen quickly - and has happened quite a few times this week, Ronan reached for the keyboard.  He typed:

Mom I ke

Think.  Think.  Think.  What did he mean?  I had no idea.  I asked Ronan to type again. 

Mom I ke

While he did that, I mentally retraced his last steps.  OH!  I knew what he wanted.  Ronan was trying to get the tablet, which I'd tucked away in my bathroom.  

Mom I ke = Mom, I need the key.  

He had just finished the morning routine, which he knew needed to be done before playtime started.  Here he was reminding me instead of me reminding him!  It was so simple this asking but required an enormous amount of patience and problem solving skills – mine this time, not his.  Some days I feel like am severely lacking in both of those...but not today.  I opened the door and gave Ronan the tablet.  He beamed at me and then confidently walked away.  

Yay.

Refiled under:  

Problem Solved

Never Give Up

and….

Anything for Ronan

--

Both Cathy and Kim took a few days off this week. Cathy wrote this post in 2016. As readers know, we were Mom yesterday, we are Mom today and we will be Mom for all of the tomorrows we have.

###

By Cathy Jameson

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

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

Hey, buddy.  What do you need? 

Ronan may or may not sign his next request.

He may or may not gesture what he wants.

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

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

Do you need help?

A snack?

A drink?

A game?

A movie?

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

Em. 

Ba. 

Da. 

Um. 

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

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

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

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

By Cathy Jameson

A few years ago a friend shared that she had a dream about Ronan.  Just as she was going to tell us more, Ronan’s younger sister, Izzy, who was 9-years old at the time, excitedly interrupted, "Ronan could talk in your dream, couldn't he?!"

The friend, who was equally excitedly, said, "YES!  He could!!"

Izzy replied quickly, "Everybody who dreams about Ronan dreams that he can talk."

I added, "And they say it's not just one or two words he says.  At least 20 friends have shared that it's been ..."

"...a whole conversation!" my friend interrupted as she finished the sentence for me.

Yes, a whole conversation.

My friend was one of the lucky ones.  She got to hear Ronan talk.  Not just talk – he talked to her and with her.  Can you imagine?  A whole conversation with my non-verbal child.  I would be over the moon if that really happened!

Long before that conversation, and ever since then, I’ve dreamt for the day that Ronan could talk to me.  I don't mean fall-asleep-and-dream-about-it.  I mean I dream as in I hope, and I pray, and I pine, and I plead, and I wait (impatiently) for that day to come.  Before Ronan lost his speech, he had only just started to talk.  After he went completely silent, we’d occasionally hear some almost functional, verbal language.  He’d sputter out a few typical words:  mama, dada, -oggy (for Doggy), -ight (for light).  And then he wouldn’t.  During that time, Ronan had never—and still has never, spoken a whole conversation.

By Cathy Jameson

It hasn’t happened to us in a very long time.  But the potential for my son to wanderer is something we will never forget.  It happens.  And, for some, it can be deadly.  To the three families whose children wandered recently – and who died, I am so sorry. 

Eternal rest grant unto them, O Lord,

and let Your perpetual light shine upon them. 

May their souls and the souls of all the faithful departed

rest in peace. 

Amen.

--

From a memory from 2014:

I had to place a service call this morning.  The technician hadn’t been to the house in a while, so he forgot that I have to unlock several locks before he could come inside. 

“Hey.  Thanks for coming by,” I said as he walked in.  

Before continuing the conversation, I closed the door and made sure the alarm was active.  The technician waited for me in the front hallway as I peeked into the living room around the corner.  The big kids were at school, so it was just Ronan home with me.  I knew I’d have to accompany the technician away from where Ronan was playing to another part of the house.  He was happily occupied, so off the technician and I went.  

We had to go out the back door to look at a potential problem area.  I said, “Hold on,” and stepped in front of him before he could reach for the doorknob.  I held my breath, unlocked the lock, and turned off the alarm.  "Okay.  It's opened," I said and moved aside. 

A few minutes later, we were back inside.  I could hear Ronan in the same spot that I’d left him—playing Wii and listening to his music.  

The technician and I sat at the dining room table and went over some information and some paperwork.  With the paperwork signed, he was ready to go.  I thanked him for his help and said, “Let me walk you to the door.”  The technician started down the hallway ahead of me.  As he reached for the doorknob to let himself out, I said, “Hold on a sec...”

He stopped mid-step and mid-reach.  Then he said, “Oh, that’s right.  The wanderer.”

The Wanderer. 

It could be a book title.  A song title.  Or the title of an epic movie.  But it was not any of those.  It was a term made in reference to my son. 

The Wanderer.

By Cathy Jameson

I replied on a friend's thread on Facebook one morning back in 2015.  The topic was all about vaccines.  I don’t comment much on any social media threads like I used to.  It’s not because I don’t have anything to say.  Believe you me, I still do.  But if I did decide to comment more, I would consider using this same reply again. 

--

A friend and I have similar views on vaccines.  One of her friends is still searching for answers though.  Good!  There's a lot to know about them.  

I encourage people to read as much as they can about on this topic.  I did just that on my friend's FB thread – read!  Read everything!  As the day went on, other people chimed in on the thread, too.  Many of us had similar views.  The friend's friend who is on the fence questioned us.  Good again!  When it comes to vaccines, I think people should be questioning what they're told.  

I gave my two cents and then a little bit of advice.  I know that not everyone holds the same opinion as I do, but I was hoping that sharing my thoughts would make a little bit of a difference.  

It didn't. 

The friend's friend found the source I shared questionable.  Another mom of a vaccine injured child had offered information as well as data from reputable sources.  

Her input was questioned, too. 

As the thread got longer, and as I could see that my replies were not cutting it, I knew I would soon walk away from the conversation.  Before I walked away, I left one more comment:

I understand the need to find cold, hard facts, but it didn't take a research study, a blog, or a stack of statistics to educate me on vaccines.  It took my sons' vaccine injuries to open my eyes and to show me that vaccines come with risks.  

Despite what was written about them, vaccines resulted in irreversible damage.  We live with the result of that damage today, even 10 years later.  So, do keep reading and asking questions, but don't forget to consider parents' input -- that input may not be part of the CDC's data nor on some science groups' website, but it can be just as valuable.  

Hoping you find the answers you are looking for.  

Everyone has their own thoughts, their own opinions, and the right to believe what they want.  That includes vaccines.  Based on personal experience, as well as the information I have –and that I keep reading about on vaccines, I am firm in my belief.  But some people, like my friend's friend, is not there yet.

By Cathy Jameson

I was asked two sets of great questions in the last week.  The first ones were from Ronan’s young sister: 

If Ronan can make sounds with his vocal chords, why can't he talk?  He can make sounds, but why can't he put them together? 

The second set of questions were in the comments of last week’s Sunday post from one of our long-time readers.  She asked:

How did Ronan learn to read and type?  These are complex global skills that show high intelligence.  You are a writer.  Ronan may have inherited your language skills.  Is he now able to type full descriptive narratives?  Does he ever attempt to draw pictures?  Can he read cartoons?

Such great questions!  I’ve thought about all of them every single day over the last few days.  The response I give his youngest sister, and one that I use when other children ask about him, is that Ronan experienced typical speech and development skills, and then he didn’t.  His oldest sister remembers hearing Ronan being verbal.  But the few words he had started to fade, as did other skills he’d mastered.  I didn’t give a huge scientific explanation to my daughter, even though she knows the medical history that played a role in that loss of speech.  I did share that even though Ronan struggles to tell us what he wants and needs verbally, he’s wowed us with other forms of communication.  He can read, type, sign and gesture lots of things!  That brings me to answering some of the next set of questions that Emmaphiladelphia asked.  

[I hadn’t realized how much I wrote in reply until I began to edit this post on Saturday morning.  But like I said, I spent days thinking about those great questions I was asked.  Here’s a bit of history with hopefully some helpful information for other moms and dads.] 

Ronan learned to read early, like his big sister did.  She was 3 years old, he was around 5 years old.  I remember that both Fiona and Ronan loved books.  When they were very young, I spent quite a bit of time reading aloud to them, beginning when they were newborns thanks to Jim Trelease’s The Read-Aloud Handbook.  It was one of the best tools I’d discovered as an early education teacher.  After naturally incorporating his suggestions in my classroom, I was excited to be able to also with my own children. 

My own children were drawn to print-rich items in our home environment - toddler books, children’s magazines, puzzles, flash cards.  Even though Ronan would later be enrolled full-time in a preschool that served children with special needs, he’d still see that material in the playroom and in our dining room where my typical children would be homeschooled.  

As Ronan entered elementary school, he eagerly learned how to use sign language.  I’d used sign language while teaching, not because I had students who needed me to sign to them, but because it was a neat skill I learned that I wanted to share with my students.  Later, as a young mom, I used it when Fiona was a toddler.  She picked it up very quickly and actually preferred to sign even though she had expressive verbal language skills.  When Ronan began to go silent, I began to sign with him when I spoke to him.  We knew he could hear us.  We knew he wanted to tell us something.  But he could only vocalize - not verbalize, his responses.  Besides starting to label everything in the house with index cards or flashcards with names of objects, we began to sign everything we could for Ronan.  The day he put ‘two and two together’ was an amazing day.  He signed ball after seeing a picture of a ball.  He turned and signed ball toward me to let me know that he knew what the image was.  I was floored.  I was so excited and motivated to teach him more!  Ronan was all of that, too, including on the day that Ronan signed cookie and immediately got a cookie to eat.

By Cathy Jameson

An FB memory from 2010 had me smiling last week:  I love Ronan more than the last bread and butter pickle left in the house.  Usually he gobbles them up.  Happily, he turned it down so I could eat it.  I could eat those tasty treats all day long.

Ironically, that memory popped up the day after I again had the last bread and butter pickle.  I didn’t offer that last one to Ronan though.  I didn’t want to share it.  I wanted it all for myself.  I don’t usually do that; but that one night when I wanted just a little peace and quiet, I ate that last pickle. 

And I enjoyed it. 

The next day, after reading that memory, I could’ve felt stabs of regret for not sharing.  But I didn’t.  That’s because I had a brand new bottle of pickles ready for Ronan.  Seeing the new jar in the pantry reminded me of a shopping trip he and I took many years ago.  Outings these days aren’t always successful for him, but that day all those years ago, with tons of patience and great communication, it was one of his best days…

From another memory, written and shared with family, back in the spring of 2015…Enjoy!

Ronan continues to be on a modified school schedule.  Lacking energy to sustain a full academic day, he only attends a few hours of school each week.  Since starting the modified schedule, I’ve had to do a lot of juggling.  Finding someone to watch Ronan during the day doesn’t always work out, so he ends up accompanying me wherever I need to go. 

Errands are harder. 

Getting to appointments takes longer.

Meetings take careful planning.  

Since we’re always hoping Ronan will gain more independence, I welcome the opportunity to bring him with me.  Most of the time, it works out well having Ronan tagalong to places he normally wouldn't go.  He gets to see his community during regular business hours.  He gets to learn and master new skills.  He gets to interact with people and they with him.  

As much as I’d rather he could have the energy to be at school learning, he’s been able to learn valuable lessons when we go out.  Some simple things he’s had to learn over the last year include:

-Learning how to walk calmly to the car when prompted (instead of acting out because he wanted to stay home and watch more YouTube videos).

-Staying buckled in the car seat (instead of attempting to wiggle out because we didn’t get more French fries).

-Keeping shoes (and clothes) on while we shop (instead of taking them off when things didn’t go as planned).

-Keeping shoes on while we’re in the car (instead of throwing them at Mommy while she’s driving).

-Resisting a meltdown and remaining calm (instead of thrashing about on the floor as has happened before). 

-Using appropriate communication (instead of pulling Mommy’s hair when we went down the “wrong” grocery store aisle).

Being able to learn those simple things has helped when we go out and about, but Ronan still has lots yet to learn.  I do as well.  I need to plan my time better so that I’m not rushing Ronan into situations he’s not comfortable.  I need to prepare the environment better as well as prepare those who will interact with Ronan.  For instance, when Ronan must accompany me to a doctor’s appointment that I’ve scheduled for myself, I should remember to show Ronan a picture of where we’re going or at least drive by the place with him one time before we actually need to go in it.  I should also let the provider know that my visit may take a few minutes longer than usual.  That’s because Ronan’s curiosity, as well as his anxiety and his sensory issues, can prevent a smooth transition into (or out of) the parking lot…the waiting room…the exam room…or meeting room that we’re going into.  I need to remember that sometimes things will take longer.  That things won't go as planned. That we are that try, try, try, try one more time family.  I also need to remember one more thing.

By Cathy Jameson

Can we talk about it? 

YES, talk about it. 

I wish more people would. 

What is “it”? 

It’s the thing that must not be named, you know…*whispers* the covid vaccine... 

Many have already shared tons about “it” and about other “its” over the years.  When I think back to when I first wanted to know more about vaccines, I think of the OG, the original voices who spoke up.  Those voices spoke for a growing many.  Their vaccine stories were heard in Washington, D.C. back in 1999.  Parent-founded groups had lots to say back in the day about it and were able to get their message in print, too.  Others shared their plight and other important information in more recent documentaries.  

Fast forward to now, and a new generation of people want to talk about it.  They want what it’s done to them and their livelihoods to be known for all to see. 

They join thousands of others who’ve questioned vaccines after vaccine injury.  Those others have ‘taken it to the streets’ before and marched in our nation’s capital.   They’ve caught the ear of influential people who’ve also offered to help the cause.  Over the years, moms headed to their own state capitals to rally the people.  From one side of the country to the other, moms got their message about it out there.  Dads did, too.

It isn’t just parents and patients who’ve raised their voices and their concerns; some medical people were on the right side of truth and kept the conversation going as well.  They knew it was worth talking about vaccines.  But not enough people in the mainstream medical community want to warn that these liability-free medical products are risky.

Instead, it remains the patient themselves, or their parents, to keep raising their voices about vaccines and vaccine injuries. 

The further we get back into real life with fewer restrictions, the less I hear some people talking about the covid vaccine.  Of course, certain others (mainstream news talking heads, corporate media, and Hollywood spokespeople) still can’t say enough about it.  They insist that it’s the only defense we have against the covid illness.  They believe it’s the safest thing for you. 

People’s personal stories say otherwise.

So, can we talk about it, the covid vax?  Sure!  Yes!  Why not!  They are still under Emergency Use Authorized (EUA).  They are still causing a divide among families.  They all still come with potential risk, even the new one that the FDA recently recommend for EUA.  

Of course, we should talk about them, these covid vaccines.  We should because the propaganda has not waned.  The risks have not lessened.  And the side effects, ones known and ones yet to be discovered, are very real.

Note: Grab a coffee, this post has donuts! No, really. Keep reading.

By Cathy Jameson

Ronan can sign his basic wants and needs.  He can type them out also.  We continue to pray that he will one day regain speech, but until that happens we encourage Ronan to communicate in ways he’s able to. 

One night last week, when he couldn’t sleep, he came to my room and sat on the edge of my bed.  He’s a quiet kind of guy, unless his favorite songs or movies are playing.  Then, Ronan can be really REALLY loud – to the point the kids will politely move him and his ipad to another room.  They don’t want to squash his happiness; they just don’t want to hear all of that happiness right next to them.  When Ronan came and sat on my bed, he was exceptionally quiet.  I knew he wanted something but couldn’t figure out what.  My laptop was open, so I quickly asked Ronan to type to me.  The prompt I gave him was, Hey, Ronan, what do you want?

mom my lijke ipad

ronan, it's bedtime

mom my like ipad 

it's too late to play. it's time for bed. 

mom my like ipad 

you can play on the ipad in the morning. it's very late, so it's bedtime now. 

mom my like ipad

no, thank you.

mom my like ipad

I goofed on Sunday and set this post for 6:00pm instead of am! So Cathy missed much of the day, and I'm sure readers missed her. Call it Senioritis on my part, the old age kind. So sorry!  Enjoy Cathy on a Monday. Tomorrow, Frau Koma Part 2 - as we look into school violence in Adriana Gamondes' chilling three part essay. Thanks.

By Cathy Jameson

One of the contacts we have with one of Ronan’s program called last week.  She needed to go over some paperwork that gets reviewed and refiled yearly.  I don’t usually dread the conversation I have with her like I do when some other people call.  For the most part, it’s simple stuff that she asks about.   

How’s he doing? 

Any changes in his health or development?

Any hospitalizations or E.R. admits in the last 3 months?

Any problems with medications?

After she asks those questions, we then review goals.  I was stunned the first time she’d asked me to make a year-long goal when we enrolled in the program.  Goals had always been something we created with therapists and educators, never with medical personnel.  I’d forgotten about this portion of the call and was again taken aback when she asked which new goals I wanted to make. 

“Goals?  Hmmm, I can think of a few, but remind me what I said last time,” I replied.

To become more actively engaged in community outings

I laughed.  I laughed so hard.  Then I said, ‘The covid lockdown, and then the shuttering of places we’d normally go, shot down any chance of creating meaningful outings.  By the time places were open again, Ronan was so out of his normal routine.  He didn’t want to go anywhere or do any of the usual things he used to do.  He still doesn’t some days.  We try to get him interested in things, including stuff his siblings are doing like we’ve always done, but it’s been a struggle.”

The nurse completely understood.

By Cathy Jameson

When one has as many kids and as busy a schedule as we have, the expression, “There’s always something going on!” perfectly sums up our life.  That expression rings through once more…and makes for some interesting (and maybe even entertaining) storytelling here. 

Two weeks ago, a hornet crawled out of a floor vent in our den.  Ronan’s caregiver was home with Ronan when the scary, flying beast emerged.  She trapped it, God bless her, and was rightly traumatized afterwards from the frightening few minutes the hornet was in my home. 

Later, while telling my husband about the incident, he said it might be time to call an exterminator.  We’d seen wasps in the house when the weather had started to warm up.  A friend in the area had shared that they, too, get wasps in the house – sometimes from their chimney, sometimes through an air vent.  Like the friend does, I trap and kill them.  I used to be a catch-and-release kinda gal.  Not so much anymore.  I like nature, but I never like to see that sort of nature in my house.  Unable to figure out how these insects were coming in, I knew we had to do something more. 

A few exterminator companies would be available to help me, but I know that their first-line of defense would sometimes be some sort of chemical concoction.  I didn’t want that option in case whatever they used would have negative interactions with Ronan’s health.  After speaking to the company’s representative, who completely understood my predicament (and who said she’d be living in a hotel room if she ever experienced a hornet in the house), I agreed to have their technician come over for an inspection.  I’d have to wait a few days though.  Their schedule and mine wouldn’t match up until after the weekend.

While I anxiously waited, Ronan’s big sister helped put screens over every floor vent in the house.  It might be a temporary fix, we said, but it was one that made our adrenaline rush less. 

I got up early Monday morning to make breakfast for Ronan before woke up and to be ready for the inspection.  Hoping he’d sleep in since he’d had two very early morning wake ups two days in a row, Ronan decided that the very second the technician drove down our driveway would be the very best time to wake up.  He didn’t come find me right away like he usually does after waking up, but waited a few minutes.  I was glad for that because it gave me a few minutes to give the young tech some information about the hornet that scared us. 

While the tech was telling me what he would do first, which would be a walkthrough of the house and a peek in the attic, I heard Ronan walking toward us.  So as not to startle the young man, I said, “Oh, hey, there’s my son.”  The young man replied, “Yes, I heard you had a son that has some medical conditions and that you’re concerned with some of the sprays used to treat bugs.”  As I gave him a quick rundown of my concerns, Ronan took himself to the bathroom.  Within a few seconds, I could hear that he was actually using the bathroom.

Wow, I thought, great job, Rone!  All those mornings that we, or his caregiver, had guided him to the bathroom first thing in the morning is paying off. 

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

###

By Cathy Jameson

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

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

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

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

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

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

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

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

###

By Cathy Jameson

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

Oh, that’s great! 

He wakes up dry, too.

Even better! 

How are his mornings?  Do you get much done?

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

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

How many hours of therapy does he need?

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

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

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

Like sitting on the toilet??

Wouldn’t that be a dream come true! 

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

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

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

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

By Cathy Jameson

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

--

Lifeline

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

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

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

Where can I go to get help?

Whom should I trust?

How long is this going to last?

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

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

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

By Cathy Jameson

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

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

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

Just be nice. 

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

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

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

We keep on going. 

We keep on working. 

We continue to help others in similar situations, too. 

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

By Cathy Jameson

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

Something else happened, too. 

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

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

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

So.

Many.

Bizarre.

Things.

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

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

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

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

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

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

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

By Cathy Jameson

...the people who sit in darkness 

have seen a great light,

on those dwelling in a land overshadowed by death

light has arisen...   Matthew 4:16

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

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

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

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

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

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

By Cathy Jameson

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

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

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

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

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

It can be unpredictable, too.