Aaaaand it's April 1, 2020.

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

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

Love to all our readers.  Kim

###

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

###

Aaaaand it's 2015.

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   I wish it were out of date.  366 days later and it still works...

By Cathy Jameson

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

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

By Cathy Jameson

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

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

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

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

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

By Cathy Jameson

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

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

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

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

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

Reading for leisure

Note: Our Cathy is serving up a great post this morning. For those of you who are not familiar with the sitcom Alice, Kiss My Grits became a catchphrase spoken by Flo, the lovable, straightforward waitress who predated Flo from Progressive. We Italian Americans might say, "Kiss my polenta!"  :)

By Cathy Jameson

Ronan had 4 follow-up appointments on Friday.  I knew it would be a long day for both of us, so I prepared some thoughts ahead of time for the providers we’d be seeing.  I am usually able to answer every question asked of me about his health and am complimented on how much I can add to the complex medical conversations his providers and I have.  I hesitated, though, when a question asked was directed at me.  That part of the conversation had started with Ronan, but then…

“Has Ronan had his flu shot?” the specialists asked.  

I gave her the same answer I gave the nurse when we’d arrived, “No, he had a reaction to that one.”

A look of shock fell over her. 

She asked, “So none this year?”

“We don’t do them anymore,” I answered. 

After a short pause the doctor asked me pointedly, “Well, have you had yours then?”

I quickly replied, “I don’t do them either.”

“You don’t? Just...don’t?”  The doctor’s response was polite enough but the tone and the strange look on her face told me that my reply was not the one she expected.  She looked as if she was about to lecture me, but I stayed composed as she looked me up and down and confidently told her, “I do not.” 

I could tell that that answer didn’t satisfy her.  I was ready to give her one of several responses if she pressed for more information.  Taking another moment to formulate her thoughts, she opened her mouth, closed it and then refocused on why we were all sitting in the exam room:  on Ronan.  

It was his appointment, not mine.  

The doctor got back to assessing Ronan and what brought us to her clinic.  I could tell that she was still baffled and thinking about us lacking those flu shots she must assume everyone gets.  I wanted to assure her that neither of us had the flu, that we didn’t have other diseases, and that we both posed no risk to her health nor anyone else’s for that matter.  The fact that she, like so many other medical providers now, asked if I had a flu shot still made me cringe as she spoke, but I was ready with a comeback if needed. 

Flu shot? 

No, and kiss my grits. 

Just get all the shots!

By Cathy Jameson

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

What Is Happening Across the Country?

Things are happening, and in some states, time is of the essence.  Take Colorado, for example.  On Friday of last week, Colorado’s SB20-163 was voted on.  It passed out of the Senate and will now head back to the House. SB20-163 restricts exemptions and forces tracking of vaccinations.  It’s also a violation of privacy as the tracking system being proposed is not an opt-in.  Worth noting is that tracking system opens the door for in-home visits “so interventions can be applied.”  Creating a law that would put the entire population on blast doesn’t protect the people of Colorado but potentially creates a platform to shame its citizens.  Data is already available to anyone who may be curious or concerned about vaccine rates and exemption statuses at schools.  Plus, vaccination rates are considered high in the state so this bill, like others we’re seeing, is an overreach.  One more thing this bill does is force parents, who wish to use an exemption, to either submit a signed document from a medical professional or require them to watch a video about vaccines.  The video was created by the Colorado Department of Public Health and Environment, a group that publicly supports SB20-163.  Suggested next steps by those in Colorado are for people to continue to show up at the capital, to contact Governor Polis and ask him to veto the bill, and to call and email representatives urging them to vote no.  

Three concerning bills were filed by early January in the Commonwealth of Virginia.  Each was considered a “bad” bill by those wishing to preserve liberty.  They were being carefully watch by families who’ve witnessed a vaccine injury also.  The first two bills didn’t make it too far, but the third one has moved rather quickly through several committees.  HB1090 isn’t just a bad bill; it’s a terrible bill.  Instead of the Commonwealth having a say in which vaccines would be required for school entry, it hands that authority over to a federal group, the Advisory Committee on Immunization Practices (ACIP).  Children attending daycares and schools in Virginia would have to follow current and all future ACIP recommendations, no questions asked.  Parents are already given a hard time as they try to make informed decisions regarding vaccines, but they will never be given the opportunity to make a choice if this bill passes.  That decision will be made for them.  Citizens should call their representatives about HB1090 and urge their reps to vote no.  It’ll likely be heard on Monday, so March 2^nd is the day to show up at the capital.  This bill needs to be killed before the legislative session adjourns at the end of the week.   

On March 3^rd, the people of Maine will get a chance to overturn LD 798.  Signed into law by Gov. Janet Mills, this bill removed religious and philosophical exemptions.  It also effectively blocked both children and adults from entering schools, to include daycares and universities, unless students follow the state vaccine schedule.  LD 798 also prohibits adults from working in both daycares and in healthcare services unless they, too, follow the state-mandated vaccine schedule.  This week, Mainers will get the opportunity to overturn LD 798 thanks to the efforts of citizens who worked to secure a veto ballot referendum, which will be listed as Question 1 on the ballot.  Those who wish to reinstate the exemptions and to once again be able to access education without having to adhere to mandates are encouraged to vote. 

Note: Cathy and I had an exchange this weekend about her Sunday post. She was working on a somber piece about the Virginia vaccine exemption repeal bill.  We're headed to a vote on the Connecticut bill as soon as tomorrow.  I dread telling my Bella that she is dangerous and unable to attend her school.  I don't think there's an icon on her TouchChat for that.   Cathy decided to run a story that had made her laugh out loud. Thanks to Cathy for the giggle. Laughter is the best medicine, Reader's Digest told us so every month.

By Cathy Jameson

Essential oils may not be considered medicine, but laughter sure can be.  Please enjoy a story from a few years ago that I shared with friends. --

I promise that this story has nothing to do with diagnosing or making claims about oils preventing, curing or healing ailments, illnesses or diseases.  It’s an essential oils story recycled from a Facebook status of mine that is just about the funniest status I have ever shared.  Since I wasn’t able to add everything in that quick status about my quest to find the one oil that I was looking for, I’ve added those details here.  If you know me and you know how quickly embarrassed I can get, you'll understand why this was quite the tale.  I don't like it when I feel embarrassed.  I like laughing though, especially after another long week of advocating.      

And now, the story:

So, I ran out of Frankincense and thought I'd run into CVS to see if they carry any.  I’ve been using it for myself and liked it.  Ronan seemed to like it, too.  A corner drug store wouldn’t normally be the first place I looked for Frankincense, but you never know.  Some of these places are catching on and offering more natural products for their customers. 

I walked in the store and saw a young man and a lady about my age talking behind the front counter.  There weren’t any customers in line, so I went up to them and asked if they had essential oils.  The woman smiled and said, “Yeah.”  Then she turned toward the young man and told him she’d be right back.  Looking at me, she said, “Come with me.  I’ll bring you to that section.”  Surprised, I said thank you and followed her.  

I thought she’d bring me to the supplement aisle, but we walked to the back of the store where the feminine products were.  I waited as she scanned the shelves. 

Interesting place for the oils, I thought. 

Looking at the bottles and boxes in front of her, she shook her head and looked further down that aisle.  “Nope, not here,” she said to herself.  “Come this way,” she directed me.  I stayed a step behind her as we made our way to the other side of the store.  

Around the corner.  

To where the personal lubrication oils were.  

Where the CVS employee extended her arm. 

Where she pointed her finger. 

And said OUT LOUD:

"THERE.  There’s the oil you’re looking for."

Um, no.  Just no.

I stared in disbelief at the lubricants.  Oh no!  I could feel my cheeks begin to burn and knew that they were turning very, very, VERY red. 

Nooooooo!

Lubrication oil may very well be "essential" for some, but that was NOT the type of oil I was looking for.  

Before I could say, "Gee, thanks, but that's not what I'm looking for," the salesclerk scurried away.  

I looked up the aisle and down the aisle.  Not about to make eye contact with anyone, I averted my eyes and began to scan a different shelf in the same section.  I looked over my shoulder and headed toward the pharmacy counter.  The pharmacist should be able to help me.  Right?

By Cathy Jameson

This is an old memory.  Originally written in the fall of 2014 for a different audience, I’ve edited it for our AofA readers today. 

--

I wanted you to know I love the way you laugh

I wanna hold you high and steal your pain away…

‘Broken’, from the band Seether

Those are the first two lines of a song I’d never heard of.  Ronan played it on his iPad last night.  Playing songs isn’t an unusual pastime.  Some of the Youtube clips that Ronan chooses and frequently goes back to are from TV shows and movies he watched before he got sick.  I like it when Ronan rediscovers those musical memories.  It reminds me of a time when he was healthy, active and on track with his development.  Every now and then, though, we’ll hear Ronan pick something that he’s never played – and that we’ve never played in front of him before – like that Seether song. 

Curious, I listened to it a few times. 

There's so much left to learn, and no one left to fight
I want to hold you high and steal your pain…

I find that when Ronan gets “stuck”, he plays certain movie clips over and over and over again.  When he does that the kids ask me why.  Could he be hurting, Mom?  Maybe, I speculate.  Does he really like that song that much?  He must, I answer.  Could he be trying to communicate to us?  Absolutely!  I do believe that now because we’ve heard him play other songs  that have described an event or an emotion perfectly.

That old habit of putting songs and movie sequences on repeat can be bothersome to the rest of us.  Not only is Ronan hearing the line of a movie or song on repeat, but so are we.  Even though it can be a tad annoying, those are his favorite lines, scenes and memories.  We can’t and won’t take them away.  Most days, we believe he chooses them to soothe himself.  He used to not know how to calm himself down and would tantrum instead.  Having the ability to self-regulate is a helpful skill for a lot of people, including those with autism and vaccine injury.  As I reflect on some of the struggles Ronan has had in the past, I think no wonder he spent so much time searching for and listening to certain Youtube videos.  On the day that he picked the Seether song, it was a tough day for him. 

…I don't feel like I am strong enough…

Note: We ran this post in August of 2016. As parents from coast to coast are losing their right to say no to their kids' vaccines, information is more important than ever. As is the right to ACCESS information. Social media is trying to shut down the free flow of information. Age of Autism is a strong counter-measure, as we are not social media although we're lovely, sociable people. Sometimes. XOX

By Cathy Jameson

I’ve been sharing my son’s story on several platforms for several years now.  For as many years as I’ve been sharing it, some people still haven’t heard what happened to Ronan.  When I meet someone who is curious about his vaccine injury, I don’t mind retelling the story one more time.  I do that in the hopes that what I impart is useful – be it a small piece of advice, a gentle warning, or if it becomes the start of a conversation that gets them thinking outside the box, I’ll keep sharing Ronan’s story.

One of the last times I shared the story, I added a few afterthoughts.  I did that because I knew that other people, including an expectant mom that I asked to join in, were listening to the conversation.  I didn’t want to scare the pants of any of the women but knew that if I wasn’t completely honest with them, they would walk away confused.  Worse, they could walk away upset with me.  Since the last thing I want to be is the source of someone’s anger, I carefully crafted my responses while also cited resources that supported the wisdom I wanted to impart. 

I shared what I’d do if it was me – if I was pregnant again, if I was taking my brand new baby in for a “well-visit”, if I was told vaccines were necessary.  After offering what I had to offer, I didn’t want to forget my thoughts.  So, I sat down and typed them up and called them Things I’d Do Differently. 

It isn’t a long list but could quite easily be expanded to include more details, lots of links, and plenty more topics.  But for now, for today’s post, stemming from one of the latest convos I’ve had about Ronan that lead to talking about diseases that lead to talking about vaccines that lead to talking about pregnancy that lead to talking about pregnancy and vaccines, here are 10 things I’d do differently today.  

What else would I do and what else could I tell a young mama-to-be to know to help her make a more informed choice?  Here’s a start:

1 – Learn the immune system, its function, and how to support it.

2 – Learn about communicable diseases, how they’re spread, and how long the disease usually lasts.  Also learn where the disease is typically caught (locally?  regionally?  overseas?) and how the disease run its course (rash?  fever?  vomiting?).  Then, learn how to treat disease and know what, if any, long-term effects may result from it.

3 – Weigh the likelihood of coming in contact with the diseases.

4 – Learn which vaccines are on the current recommended vaccine schedules (pediatric and adult).

The Jamesons are always a team.

By Cathy Jameson

In trying to fix a major benefits issue last week, I learned that I was not listed as Ronan’s mother in the company’s system.  Instead of helping me, I was told that I was unauthorized to speak on my son’s behalf.  I wondered how that could be as I was the one who filled out, signed, and submitted the forms for him to be enrolled in their system.  After making some calls this week, I am pleased to share that that that major issue has been resolved.  I am now recognized as Ronan’s mom! 

In all the years I’ve had to speak up for my non-verbal son, it was the first time that someone had dared deny my role.  That denial caused further delays for a time-sensitive issue.  The other problem, which could cause serious consequences, has unfortunately not yet been resolved.  I’m still working on it and will continue to until Ronan gets what he needs.  I had to put those efforts on hold for one day this week though.  That day, we’d head back to the same hospital that Ronan was transported to by ambulance to last month.  This time, I’d be driving him myself. 

Ronan’s done well since he was discharged.  While healing, he’s gained back some weight and energy.  Happy to share that news, I looked forward to hearing what next steps the doctor thought he’d want to take at this follow-up appointment. 

This doctor wasn’t the same doctor who treated Ronan back in December.  The one who treated Ronan was very thorough and incredibly kind.  Before the new doc would get a chance to share his thoughts with me, he asked that I recap some of Ronan’s medical history and what had brought us to the hospital last month.  I shared as much as I thought relevant, and then I listened to him share what he knew.  He knew a lot!  It was clear that he took time to read through much of Ronan’s medical file.  He was aware of the other specialists we see and why.  He was knowledgeable of the type of care Ronan receives already and wanted to continue what was working without interruption. 

I got a good feeling this new doctor, so I eagerly listened to the treatment he wanted to propose.

Since my husband couldn’t join us that day, I took notes while the doctor spoke.  I stopped writing when the doctor shared that he wanted to bring in more specialist.  Reminding myself that adding specialists isn’t always a bad thing, I locked eyes with the doctor and asked him to tell me more.  He filled me in on who would also join the team and then gave me time to ask as many questions as I could think of.  A young resident, who had joined us in the exam room, stayed quiet for most of the conversation.  Soon, she’d be given time to interject her thoughts.  I appreciated that she, too, knew enough of Ronan’s history to understand how unique he was.  She brought up past diagnoses and past treatments and wondered if those may have contributed to the current problems Ronan’s dealing with.  I thanked her for bringing up what other doctors we’d seen elsewhere quickly dismissed.  I also thanked her for asking questions that others didn’t think to.

By Cathy Jameson

“Does your son know you are calling about him?” 

In all the years I’ve had to make phone calls on Ronan’s behalf, I’ve never been asked that question before.  I thought maybe I’d jokingly ask Ronan, who was on his way to use the bathroom, if it was okay for me to talk about him.  But, my 17-year old non-verbal child with regressive autism doesn’t understand the type of phone call I was making, so I opted to let him be.  Ronan, even if he doesn’t realize it, relies on me to call people when we run into problems related to his medical care.  That includes dealing with a major problem, like the one that prompted this particular phone call.    

Unsure of why this insurance representative was asking me that question the way she was, I slowly replied, “Yes...”  

She continued curtly, “And are you authorized to speak for your son?”

“Of course I am,” I stated proudly. “I’m his mother.” 

I actually smiled while saying that.  

Seconds later I had to repeat myself, “I’m his mother!”  But that time, I said it in a perturbed voice.  I also added, “Are you kidding me?” when I said it.  The response I got was silence.  The representative had just told me I could not ask any further questions or get any details about my son or his plan.  I asked the representative to look at her screen again and tell me if it wasn’t me, his mother, then who is authorized to speak to them?  Who?? 

“I can’t tell you that because you are not allowed to know that information.”

I was not polite in my response and could only blurt out, “You’re not kidding me, are you?!”

I never yell at people like that, but this gal got an earful from me.  What information she would divulge about Ronan was absolutely and completely wrong.  I told her that and then asked her politely to please update the information.  Because it was critical that I get the information she had at her fingertips, I politely said that I would be happy to give her the correct information if she would allow.  She would not because “Ma’am, you are NOT authorized.”  I immediately asked to speak to a manager.  No.  A supervisor?  No.  A senior member of the team.  NO.  Sometimes it helps to bypass the first tier of representatives.  Over the years, I’ve learned that they can only do so much.  I was not allowed to speak to anyone in that first tier or higher though “because our system doesn’t recognize you.”  

I’m not sure why, but she was fuming when she said that.  

I was, too.  

I don’t think her anger was warranted.  

Mine, on the other hand, was.  I was dealing with a pretty big issue already and now had an angsty customer service rep giving me attitude telling me that I didn’t exist.  I wish I’d had our old house phone.  Hanging up and slamming a cordless phone down doesn’t have the same effect as those old rotary phones do. 

Note: We ran this post in June of 2016.  Today is "Sanctity of Human Life Sunday":

On January 13, 1984, President Ronald Reagan issued a proclamation designating January 22 as the first National Sanctity of Human Life Day. (January 22, 1973, was the day the U.S. Supreme Court legalized abortion-on-demand in all 50 states.) Churches around the United States use the day to celebrate God's gift of life, commemorate the many lives lost to abortion, and commit themselves to protecting human life at every stage. Churches continue to recognize the third Sunday in January as Sanctity of Human Life Sunday. In 2020, the date will be January 19. 

By Cathy Jameson

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

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

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

--

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

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

that I saw shared on FaceBook not too long ago:

Sitting here reading those highlighted words makes my stomach turn.  

http://www.njblackcaucus.org/members/

Contact legislators this morning to explain that S2173 discriminates and segregates schools. Be concise and respectful. The vote is today. This is a bellwether moment. Ring it loud. 

By Cathy Jameson

Last Monday, I was able to talk to someone on Ronan’s team about a few things, including getting a conversation started about guardianship.  That isn’t her area of expertise, but the nurse was able to offer some useful advice that I will look into.  This is the same nurse who’d asked me what medical goals I had for Ronan when I met her in 2018. Back then, my goals were to stop the seizures and to help Ronan regain speech.  Since the seizures have continued, albeit, less in frequency thankfully, and since speech has yet to return, I kept those two goals current for 2020.  I didn’t ask if I could add another goal when the nurse came to update Ronan’s file, but I added one more anyway:  to help Ronan communicate more.  

Ronan can communicate, which is a huge blessing, and does so through a variety of ways.  As a non-verbal preschooler, he figured out that using sign language got him what he wanted.  As he aged, we discovered that Ronan could read, so we filled our house with print-rich items—flashcards, large-print picture dictionaries, and post-it notes were plastered throughout our home.  We labeled every single thing we could label.  Doing that helped.  Ronan read everything eagerly.  Then he began to write.   He also started to type.   He can and still does all of that.  So why make a communication goal?  

Because I want to know more.  

Ronan is a simple kid.  Simple things make him really happy.  He can tell us that he’s happy with a smile, with a laugh, or by typing out h-a-p-p-y.  But sometimes, he gets sad.  He doesn’t tell us why he gets sad though.  And he can’t share why something is bothering him either.  We can usually deduce that something set him off, but if we don’t figure out what did, negative behaviors have the chance of creeping in.  That can make life more complicated. 

One negative behavior, if not diffused, can lead to more negative behaviors.  

Not wanting those to happen, my goal this year is to help Ronan communicate more...and to communicate better.  He does such a good job already, so I’d like to add new opportunities.  I haven’t yet figured out how to do that, but I’m determined to read and learn some strategies.  I am most curious to know what other kids like Ronan have done to be able to answer the WHY questions he doesn’t answer:

Me:

By Cathy Jameson

It’s the sixth, and I’m finally ready to start January.  I’m aware the new month has already started, but it usually takes me a few days to get every appointment, every sports event and every outing listed on our big family wall calendar.  Once everything is on the calendar, I breathe a little sigh of relief.  Sometimes, I’m completely organized for the month ahead.  Other times, I’m far from it.  

Prepared or not, each time that I turn a calendar page over, I get a little excited.  I look at what we’ve accomplished in the last four weeks with a big smile.  We’ve done so much!  That’s a good feeling to have.  Wanting to keep the momentum, I look at what’s recorded for the next month’s activities and add anything new that’s popped up.  A different feeling come over me this time as I scan the page – Holy smokes! We have so much to do.  Putting it back on the wall where we can all see it, I walk away from the calendar hoping that I haven’t forgotten anyone or anything.  

My expectations are great.  They have to be.  There’s lots of us Jamesons living here in our home.  While we are one unit, each of us have our own things going on.  If I don’t carefully plan for what’s coming up, someone’s practice, game, or appointment could get forgotten.  Being forgotten is almost as bad as double booking myself, which I’ve accidentally done before.  So as not to make any mistakes, I also try to plan farther out than just the next four weeks.  I did that last week when I turned multiple calendar pages to add birthdays, anniversaries, six-month follow up visits and more through to the end of 2020.  I know I’ll be better prepared months down the road when I see the reminders I jotted down this week.  

Peeking at the rest of the year wasn’t a bad idea.  As I got closer to the final months, I knew that we’d have both a countdown and a count up ahead.  Ronan turns 18 this year.  18!  

T-minus 11 months to adulthood.  

T-plus(?) 11 months to guardianship.

Ronan’s birthday will certainly be joyous.  We’ll celebrate it by taking Ronan out to his favorite restaurant.  We’ll shower his with gifts and remember all the good that he’s brought to our lives.  Besides carrying on our old, standby traditions, if Ronan continues to need the care he needs today, his next birthday will include a new beginning—that little thing called guardianship.

I’ve yet to read everything there is to know about the transition Ronan, and we, will experience when he turns 18.  I’ve heard a lot, I’ve seen a lot of parents go through the process, but I still have much to do to prepare for it.  Petitions, trusts, and a care plan are top of the list.  Another list, this one of people to talk to, will also have resources of local and state agencies I’ll want to check out.  Several of the people on that list, including one whom I’ll get to speak to as early as tomorrow, are already very familiar with my son and his intensive needs.

By Cathy Jameson

A couple times this past week, I’ve seen news sources sharing their top 2019 stories.  Some shared a list of their Top 10 in one post while others offered a daily recap over the course of a few days.  I’ve done that here on Age of Autism a few years ago, and thought it would be neat to do that again.  But life got too busy and prevented me from doing anything like that this year.  Not wanting to ignore all that’s been accomplished in the last 12 months, I want to propose something different.  Instead of us here at AofA sharing our top stories, can I ask that you share something amazing that happened for you or your family? 

We’ve been able to build each other up before, so tell us about your favorite moment of 2019.  I’ll start with something that’s been making me smile ever since Ronan accomplished it, then you leave your something awesome in the comments below. 

Not only did Ronan indicate that he is aware of toileting needs in 2019, but he did something really cool with his siblings about 3 weeks ago.  Now, those outside our community may not understand why we all leaped for joy the day that Ronan did this, but we are still all sorts of giddy thinking about it.  That’s because Ronan keeps doing it.  What does he do? 

Ronan comes up to us, peers deeply into our eyes, then, ever so slightly touches our nose.  Staring straight into our eyes a few seconds longer, he then moves his nose a little to the left and a little to the right.  Because he’s doing nosies!!!  It looks absolutely ridiculous and incredibly silly, but he finally understood how to play the nosey game.  Like that toileting feat, it only took 15 years for Ronan to be able to play it.  It’s more than a simple game though.  It’s gaining attention from someone and it’s positive and sustained interaction with that someone.  More than anything, though, it’s endearing.

Note: The perfect patient turned 17 yesterday. Happy Birthday, Ronan! And thank you to Cathy for sharing her beautiful family and Sunday sermons of hope with each of us.

By Cathy Jameson

Before I sat down to look at the calendar last Sunday evening, I didn’t need to remind myself that we would have an incredibly full week ahead.  I already knew we would.  Besides the kids’ usual events and Ronan’s scheduled weekly therapies, I had my own appointments to get to starting first thing Monday morning.  Knowing I couldn’t be in two places at once, my husband offered to take the morning off.  Having just come home late Sunday night from being gone for 10 days on two back-to-back work trips, I welcomed the break he’d provide by getting the kids up and ready for school.  I’m never up before 6am, but I was actually grateful for the few minutes of peace and quiet I got before walking out the door. 

I had other places to run to after my early-morning appointment was done, so I continued on.  Thanks to having that alone time, I got some Christmas shopping finished.  People often ask me how I take care of everything plus myself with all that we have going on.  I don’t have a perfect answer, but tell them that somehow, usually with the grace of God, things get done.  I wouldn’t realize just how much I really do until a few hours later. 

Midday, I received a phone call from one of Ronan’s caregivers.  She never calls.  Ever.  We do all of our communication via text.  Seeing her number flash across my screen made me think something was wrong.

Something was terribly wrong.

Ronan was at one of his therapy sessions when he began to have a problem which sounded like it might require medical attention.  I was still out and couldn’t get to him quickly.  But my husband could.  Instead of just taking the morning off, he’d been able to take the whole day off.  With him closer to Ronan than I, he met up with Ronan and his caregiver.  I’m glad he could do that because things would soon go from bad to worse. 

I couldn’t get to Ronan when that happened, so I met him and my husband at the ER.  The team of nurses and doctors were quick to help alleviate one of the problems, but we all agreed that with all of Ronan’s existing medical issues and complications, we were in the wrong place.  Ronan would need to be elsewhere with a team of pediatric specialists who could evaluate and treat him.  Not wanting to waste any more time, an immediate Emergency Room-to-Emergency Room transfer was ordered. 

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


 

I didn’t know it at the time, but my husband had snapped a photo, too.  There’s me following the ambulance Monday night.

By Cathy Jameson

I remember this day so clearly – like a roller coaster ride, it’s got several ups and downs, and in such a short time span, too.  Originally written a few years ago for family and friends, I wanted to share it here today. 

---

Once a month, I get an alert in my inbox.  Like clockwork, the company that we get Ronan's diapering supplies from reminds me that it's almost time to re-order his supplies.  Since life is a tad bit busy for me, I appreciate the reminder.  

As usual, since it was almost time to submit that order, the email was sitting in my inbox.  As usual, though, I forgot to check my email.  I didn't miss out on placing the order because I got a phone call reminder about it this morning.  "Good morning!" a cheerful soul bellowed.  "I'm calling about Ronan's diapering supplies.  It looks like he's due for his next shipment.  Would you like me to push the order through?"

It was only 9:15 a.m. and way too early for me to be as chipper as she was, especially on the phone, especially with a stranger, and especially after the tough week I’d been having.  Taken aback at how happy this person was made me smile though.  I wasn't about to be the one to squash her happiness, so I gleefully replied, "Oh, yes, please!  I was just thinking I should check to see if that email reminder had been sent.  It's been just about a month since you all sent the last one, hasn't it?"

"Yes, ma'am,” she concurred. “It has.”

"Well, then.  I'm glad you called," I said still smiling.

"So, same address, same phone number, same information as usual?" the representative inquired.

"That's right.  Everything is the same," I answered.

"Good!  So has Ronan nearly exhausted the supply we sent last month?" she inquired.

Nearly exhausted, like his mother? I wondered.

"Yep!" I said.

"Great!  Let's set this order to go through for him now," she said.

"Perfect!  Thank you," I added.

After saying good-bye and hanging up, I smiled once more.  What a great attitude that gal had.  She did her job well, and I could tell she was not just happy in her position but proud of the work she was doing.  I do my job well (most of the time), but I don't always have the best attitude.  I can tell that, and those around me pick up on that, too.  I know I need to work on changing some of my attitude around, so I mentally added Have a better attitude like the diapering service rep's attitude! to my To Do list.  Then I set my attention back on Ronan.  I was packing his things that he and his caregiver would need for his day out, which included getting to one of his weekly therapy sessions.  Before I could get his backpack completely ready, I got another phone call. 

By Cathy Jameson

Every week is a busy week for our family.  With five kids, we always have lots going on.  Last week was no different.  Even though we had only one after school activity on the calendar for Wednesday, a basketball game, it would be our busiest afternoon.  The game would start a little bit after school got out, but before I could go to it, I had to go back to our neighborhood.  A neighbor of ours had asked Izzy to check on their dog.  If we timed it well, I could get her to our neighbor's and then to the game with 5 minutes to spare.  Halfway to the neighbor's house, I said, "Maybe I'll use the bathroom at home before we go back out..."  

Saying that out loud made me absolutely have to use the bathroom.  

So, Izzy and I made a new plan.  Instead of me waiting at the neighbor's with Izzy while she walked the dog, I would zoot to our house with Ronan, who’d come with me to pick up Iz, and use the bathroom.  She would walk home, change out of her school clothes and grab a snack to eat on the way to her little sister's game.  She'd have time.  As long as nothing got in the way.  

We live in a pretty decent area, but as we drove up our neighbor's street, we saw a stranger a few houses down.  It gave me an unsettled feeling seeing him.  She didn't say it at the time, but Izzy had gotten a weird vibe when we drove past him.  Mother's instinct told me not to leave my daughter alone as she would normally walk the dog past the house where the man was.  So I parked the car as she took care of the dog.  I definitely had to use the bathroom by then, but it would have to wait. 

By Cathy Jameson

Every few weeks I jump online and check out NVIC’s latest news.  A fantastic resource, they’ve done a great amount of footwork to keep their supporters informed.  Most of us who follow NVIC had not been, at one time or another, fully informed by medical personnel we once trusted.  Our kids were harmed because of that.  Never wanting to repeat that, I’m thankful that the group’s leaders and many volunteers created the platform that they did.  That platform includes being able to look up current legislative information.  Even if a bill they’ve posted doesn’t directly affect me or my family, the knowledge they share about it is a benefit. 

Take, for example, when California lawmakers introduced SB276 earlier this year.  Families in California communicated quickly within their local and state message boards when they learned of the bill.  Those efforts helped educate more residents, including many who did not have a child with a vaccine injury.  Thousands of families came together instantly.  NVIC, and other advocacy groups as well, picked up on news of SB276 and made sure the rest of the country knew that fellow US citizens’ rights were in jeopardy.  Within hours, hundreds of thousands more people beyond the California borders were aware and ready to mobilize. 

While that swift action did not help the people of California, Americans from one coast to the other stayed informed and promised to do whatever they could from a distance.

Image sources: the internet

Not soon after, friends in New York went to bat against their legislative leaders.  With how unnerving it was to see Californians and then New Yorkers be quickly striped of their rights, I began a new habit.  I started checking on several states’ legislative activity.  I do that faithfully now every few weeks.

Image source: NCSL.org http://www.ncsl.org/research/health/school-immunization-exemption-state-laws.aspx

Something I’m specifically searching and watching in state legislative databases are pre-filed bills.  Those are pieces of legislation will be proposed well ahead of when the state’s next session begins.  Like anything that can be turned in prior to a deadline, time is on the side of representatives and their staffers.  They’ll be able to organize, document, and prepare a bill weeks, if not months, before it can be introduced on the floor.  Some states will limit how many bills can be documented.  Other states will also only allow a certain number of pre-filed bills per state house or state senate member.  Regardless, it’s always good to know what our elected leaders are doing.

By Cathy Jameson

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

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

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

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

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

Where I’ve scaled back some of my efforts within some of those groups, I see new names, new faces, and new energy surfacing in our community.  When I’ve had the chance to sit down at the computer, I am in awe when I scroll through my newsfeed.  People like Joshua Coleman, Hillary Simpson, and the leaders in state medical freedom groups, like Texans for Vaccine Choice and like Latinos for Medical Freedom, leave me speechless.  They have a zest for life and liberty that is unbelievably refreshing. 

By Cathy Jameson

70 below.

No, we're not talking about the weather today.

My child has autism.  It’s the non-verbal regressive form of autism.  If he remains as cognitively delayed as he is, he’ll need life-long care.  We’re ready to provide that.  Thankfully, other groups exist to provide the kind of care he may need.

Local agencies advertise that will work with families like mine.  They can help us to get the sort of support children like my son could need as he ages.  With how much support we anticipate Ronan might require, tapping into local and state service is a godsend.  But the process to secure those services?  It’s lengthy and daunting.  I know this.  But nothing could prepare me for the emotions that came over me as I started the process. 

I shared the process several years ago with family members which is recounted in the post below.

 

I played phone tag a few weeks ago with a representative from an agency who said she can assist me.  Responsible for screening incoming clients who may need long-term special needs services, I hated to miss her return phone call.  In our area, the wait list for services isn’t just a mile long; it’s years long.  According to other parents, it’s at least 5 years long.  So, when the representative and I were finally able to connect a few days later, I made sure to be prepared.  

I plugged Ronan in to his favorite activity - the Wii.  It would surely keep him occupied while I was on the phone.

I had my list of questions ready.  There were many.

I had documents close by to reference.  The stack was at least 2” high.

I had my calendar open.  I was ready to cancel everything from here to next December to make sure Ronan got an appointment.

We started the phone call with pleasantries and then got down to business.  I explained why I’d called her office earlier.  I have a son…he has autism…he has several medical issues as well…I understand he may qualify for services…I believe that there’s a wait list…can you tell me what I need to do to get him on that list?

Note: Cathy has the weekend off with her beautiful family. One sentence from this post she wrote in 2016 caught my eye. And felt like a punch to my stomach. "People live in the society they build." What have we built here in the USA. A culture that protects everyone except the vaccine injured. A country where the government gleefully denies basic constitutional rights in favor of industry. A nation that exalts celebrities and pretends to care about victims. A population unable to stick to a story for more than a screen shot - the result is the major stories that impact us Jeffrey Epstein did not kill himself are quickly forgotten and buried. We live in the society we built. Lord help us. XOX  Kim

By Cathy Jameson

Every evening for the last two weeks, I’ve read a page from a book called The Jesse Tree.  Bought years ago when I was still teaching, the book rests on a shelf in my living room for most of the year.  Filled with hope and thoughtful reflections, I look forward to using it with my own children starting the first week of Advent.  The book is very simple and helps us remember the reason for the season.  Read aloud right before we eat dinner, the kids learn something from it.  Most days, I do, too. 

The book I have encourages conversations about Jesus, about His lineage, and about how we’re called to serve others in His name.  The messages are quick and concise, and the symbols that accompany each story are meaningful as well.  The very first symbol is a family tree.  The tree’s branches are empty on day 1, but the excitement of which story and which symbol will be next keeps my kids interested.  Ronan isn’t as in tune as his siblings are, and he offers no input when I ask the kids about what they think the next story will be, but he sits and listens to the chatter around the table each night. 

One message that popped off the page at me on Tuesday evening had me going back to meditate on the passage and the short prayer that accompanied that day’s devotion.  The reading was from Exodus, the reflection was about Moses and the people of Israel, and the symbol was the Ten Commandments.  But it was something else that the author stated that caught my attention: “People live in the kind of society they build.” 

How true. 

As a child, the society that I envisioned I’d be living in as an adult is much different than the one I am living now.  Plus, never did I ever think I’d be part of two societies–one where my typical kids hang out and one where my child with special needs hangs out.  Sure, we crossover, but many times Ronan will stay in his own world while his siblings frolic and thrive in another.  As a family, we try to bridge the two societies as much as we can.  Ronan joins the siblings at their sporting events.  They join him for some of his therapy sessions.  They share some time together which we all find inspiring.  Some things shouldn’t be shared, though, like when Ronan becomes aggressive and attempts to pull his sisters’ hair.  We work through those terrible times always praying that positive encounters will be right around the corner. 

As a child of the 70s, I knew nothing about autism.  As a teen in the 80s, I still hadn’t heard of the disorder.  As a teacher in the late 90s, I had yet to see a student who struggled like so many children do today.  By the 90s, I’d finally heard of autism, but it wasn’t until the next decade did my son’s autism introduce me to a society where I have become a long-term resident.   

Thinking about who’s helped me find my way in a place where I had no direction and that I had desire to be, I recalled past conversations with other newbie parents.  I remembered other parents, the veterans of the community, and their words of wisdom.  I also thought about the groups and companies that helped me learn how to help Ronan.  Honored to serve others, each person I’d encountered had become a beacon for me.  Their acts of kindness were forever etched in my heart, and each one is still very much cherished by me. 

By Cathy Jameson

Last week a young boy asked me if I liked Science.  I really don’t like it.  It was my least favorite subject throughout elementary school and high school.  Full of wonder, and incredibly smart, this kid thinks the exact opposite – he loves Science!  I didn’t want to squash his enthusiasm, so I took a second before I made a reply.  Something else made me pause, too. 

I was busy right before he approached me, but that’s not why the question caught me off guard.  The Science he loves is the same Science that made broken promises to me.  It didn’t just lie to me, it took everything from me.  That happened post-vaccination.  Science told me that childhood vaccines were 100% safe for my son and that his health would benefit from them.  Now non-verbal with seizures and regressive autism, my child is unable to function like this boy can.  I could tell this kid that at one point even though I didn’t like Science I trusted it, but then I’d have to explain why.  Not wanting to go into that intimate detail with a child I don’t know very well, I continued to think of a simple answer for his simple question. 

As much as I still wanted to say to him, “Nope.  Science stinks,” I kept that to myself and replied, “You know what, bud?  As a kid, I did not like Science at all.  But as an adult, I appreciate it.” 

That’s the truth. 

I do appreciate Science.  

But I’ll never be able to fully trust it. 

Satisfied with my answer, the boy immediately asked me a Science-related question.  It wasn’t complex or about vaccines, a topic I know well, but it was a question that I could not answer.  Stumped, I promised that as soon as I had time to do some reading I’d find some information for him.  He told me he, too, wanted to continue to find the answer on his own.  So we made a game of it – whoever could answer the question first wins.  There wouldn’t be a prize, just satisfaction that we’d learn something and wouldn’t be puzzled any longer.

By Raising a child with as many medical issues as my son has is no easy task.  That’s why we celebrate each and every little gain as they happen. Those are some of my favorite days.  Other days, like one we had last week when we hit a medical setback, I’m reminded of how this all started.  I’m not fond of those memoriesnor of the emotions that creep in when they resurface. 

My youngest was helping me clear the dinner table when she heard Ronan attempt to say something.  Attempting to speak again, I deciphered what it was that he wanted and then went back to cleaning up.  I glanced over at my daughter.  She was smiling. 

“Mommy, I wonder what Ronan’s voice will sound like when he talks.”

A favorite memory instantly came to my mind.  Chunky and with beautiful tan skin, Ronan was engaged.  He was displaying perfect eye contact.  He was sociable, happy and chatty.  Hisspeech hadn’t yet vanished in this memory of mine. I remembered hearing meaningful verbalizations and knew that new functional words were forming.  At this time in his life, Ronan’s eyes were full of wonder and were stunning.  His sweet voice captivated many whom he came in contact. 

I miss that husky voice of his.  I miss those bright brown eyes too. 

After cleaning up, I watched baby videos and looked through digital photos on the computer with my younger kids.  A special request of theirs, they love to see their tiny little selves on the computer screen.  They love it even more when I have time to sit down with them during this activity.  Mom!  Look at how small I was!  Oh, Mommy. I remember that toy!  Tell me the story again that goes with this picture.  I love hearing it.  It’s always a treat to hear my children giggle and reminisce about the “old days”.  Midway through that afternoon’s slide show, the image I had of Ronan and the sound of that husky voice flashed across the screen.  I smiled.  Then I ached.  I wasn’t prepared for what would come next.  I don’t mean what event that I had videotaped next in the home movie; I mean the onslaught of raw emotions that went through me. 

I told myself to stop watching the videos, because I knew that the more I watched, the more I’d wished I hadn’t started. 

Ronan was developing.  Until he wasn’t.

Ronan was talking.  Until he couldn’t.

Ronan was interactive.  Until he cared more about pushing one button over and over again on one toy than he did about us.  I didn’t see my cute, happy child in those images.  One photo after another, I could only see delays, lack of development and then no development whatsoever.  

How did I miss it? 

By Cathy Jameson

Today’s post is from a journal entry that I wrote shared elsewhere several years ago…

Knowing that a new hire comes with a good referral eases my mind.  That referral usually comes after I've asked friends, therapists, neighbors, coaches and my people in my church community if they know someone who's looking for work.  

The job?  Working with my son

Location?  In our home

Why?  Because he requires one-on-one support

When?  Now until...

We haven't always been able to hire someone that a friend has recommended though.  When that happens, if we don't find someone after reaching out as far as our rolodex of professionals and circle of friends go, I brainstorm ideas of where else I can look for qualified individuals who can meet Ronan's needs.  

One place a lot of families will use to find in-home help is online.  Since we have had more bad luck than praise reports using online classified ads, I knew that I wasn't going to go that route to find a new hire in my last search.  Others have been successful using services that match sitters/nannies/special needs attendants with families.  But I really wanted to go the old fashion route – by word of mouth. 

We lost a worker a few months ago.  I have been actively trying to fill the position since then.  After asking everyone we knew for some leads, I was not able to find anyone through word of mouth efforts.  I knew that I was going to have to look beyond my comfort zone to find our next provider.  

While looking through some ads placed by other parents in similar positions, I read that people were having some luck working with their local community colleges and universities.  I looked into that and discovered that some schools will offer to place their education, nursing or psychology department students in both paid and unpaid internships with families like mine.  We had not utilized an intern yet, but I would be open to that if we found the right match.  I thought that could be a really good idea, especially if it was someone who could learn and earn hands-on experience with my family.

Recently, a friend shared that she was looking for in-home help for her son as well.  Our boys are similar in that they are both non-verbal and require one-on-one assistance and supervision.  We were both going to have to hire complete strangers because she, too, could not find anyone within her circle of friends to help.  

By Cathy Jameson

Every now and then, I discover that someone I know has taken a piece of advice that I've offered.  I like learning that.  It tells me that my knowledge, or something that I’ve experience, was recognized and that it had some value.  It’s encouraging to know that some of my ideas have become someone else's stepping stone.  Every now and then, though, I discover that someone that I know has opted to forgo the advice that they’ve asked of me.  I know that no one is ever under any obligation to take my advice, but I have to admit that it hurts a little to know that something that I've share has been dismissed.  

It hurts a little bit more when I find that not only was my advice dismissed, but that a decision the other person made that went completely against suggestions that I offered.  

It hurts a whole heck of a lot when the advice, the information, the suggestions, and the decision that was made was about vaccines.  

That hurts the most because in that last situation, I was asked to retell how liability-free vaccines negatively impacted my son’s life.  To relive those moments - to hear myself talk about the vaccine injury, the regression, the loss of speech, and also the beginning of the seizures - to hear myself say out loud to the other parent, "If I'd known then what I know now..." there is no other way to explain what it feels like except that it hurts.  It hurts to learn that they’ve opted to go down that same path I now desperately wish I could’ve avoided. 

As much as it hurts, I have to remind myself of one very important fact:  I was merely being asked for my opinion.  And that my opinion is just that - my opinion.  I am not responsible for what someone does with it.  

I am not responsible for other parents.

I am not responsible for their opinions.

I am not responsible for their decision.  

I am not responsible for their actions.  

And I should not let their opinions or their decisions or their actions affect me.  But they do affect me.  They make me want to mutter under my breath.  To retreat.  To keep my mouth shut.  To hide.  

But I won't hide.  And I won't be quiet.  I won't stop sharing my opinions, my decisions, my actions, or Ronan's story.  Why?

By Cathy Jameson

After a very long week, my husband and I met up at a non-profit organization’s social hour on Friday evening to support their efforts.  With how busy last week was, he on a business trip and me managing the kids and all of their afterschool activities, it was also a nice date night for us.  Several times during the evening, together, we had the opportunity to share Ronan’s story.  When I find myself in a situation where I can talk about what happened to my son with a roomful of strangers, I make a decision – tell them some of what happened to him, or tell them every single, little detail of his life story.  

This time, I kept the story simple.  

Those who asked about him were told that Ronan has quite a few medical complications that require on-going care and treatment.  Some were sympathetic and wanted to know more.  So I shared a little bit more.  But not everything.  That meant, this time, I kept vaccines out of the conversation.  In the past, I’ve been much more descriptive like in what I recount below.  It’s an older story that I’ve shared elsewhere.  While I easily could’ve had this same exact conversation over the weekend, I wasn’t ready to go into every detail.  They’ll be other opportunities for that.  I’m sure of it. 

--

You subscribe to that?  Really??

I’ve witnessed a few camps in the autism community over the years.  There are those who adamantly believe that autism is caused by one contributing factor.  Some believe that it's many factors.  And there are others still who choose not to focus on the cause at all and instead call simply for more awareness.  Those in the first and second camps rally around education and prevention.  Those in the third prefer to focus their energy elsewhere.  Certainly other camps exist.  As far as I know, not one cause or treatment has been identified as yet. 

I don’t fall into just one camp.  Autism is a spectrum disorder.  I believe that several factors can lead to an autism diagnosis.  The more I’ve read over the years, the better a perspective I’ve gained about those factors and about the disorder.  When I'm asked about what happened to my own child, I share what I've read.  I also share what I know happened to Ronan.  

I had a conversation with someone about autism about two or three years ago.  After some small chit chat, the person I was speaking to asked me about my son.  He’d noticed that something was different.  The more curious he was about Ronan’s diagnosis, the more questions he asked. 

So, Ronan was typical at one point? 

When did he change?

What did the doctor do?

Can you trace it back to something...like an allergy, an illness?  Did he fall?  Did he hit his head?

For each question asked, I offer an answer.

Yes, he had stellar APGAR scores and had reached several milestones as a baby.  

But…Ronan changed over time.

By Cathy Jameson

Two recent occurrences prompted today’s Best of.  The first one was seeing my favorite grocery store begin their in-house flu shot advertising.  It was only mid-August when I saw the sign.  I thought it a bit early for their pharmacy to begin their flu shot campaign, but, like one doctor told me, “The flu virus knows no season; it doesn’t wait until winter to strike.”  She’s right.  Doctors and pharmacists who know that, and who don’t push the ineffective flu shots  on their customers each year, get my respect. 

Doctors, like the one who told my daughter last week to get every vaccine for every disease there is, do not get my respect.  My daughter let her own opinion be known after she was told that, but Fiona didn’t get the respect she should’ve gotten.  She said what she had to say in response but knew her knowledge and opinion would fall on deaf ears.  That’s reason number 2 for sharing today’s post. 

After a quick recount of the conversation she’d had with that doctor, Fiona and I looked at a list of vaccine ingredients.  We talked about how she could cite information differently next time should the opportunity arise.  Show the person the stats straight from a source they go to and will quickly defend – the CDC!  We both know how hard some vaccine conversations can be, especially when the other person in vehemently pro-vaccine and works in the Science field, but Fiona feels confident that she can defend herself better, and the science, next time.     

Since we are just at the beginning of what will likely be another flu shot advertising frenzy, it would be wise to read what’s in them.  Here’s just a sampling: 

Image: Vaccine ingredients; source CDC

If you have never looked at the individual ingredients of all of the liability-free vaccines that the US government state are safe and effective, follow this link to an appendix of the CDC’s Pink Book.    Injecting animal and human diploid cells, to name just a few questionable items, sounds far too risky to me and Fiona.  So do quite a few others ingredients, which I wrote about in today’s Best of, What’s In Your Flu Shot?

By Cathy Jameson

Years ago, this video made the rounds as the 2006 flu shot season got under way.  As much as I loathe this particular shot and the problems it caused my son post-vaccination, I couldn’t help but laugh. 

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

By Cathy Jameson

It is not enough that we do our best, sometime we have to do what is required. 

- Winston Churchill 

I saw that quote last week and immediately thought of parents in both New York and California.  Coming together to express concerns over their state’s proposed legislation, parents in both New York and California organized their efforts as soon as they learned what their legislators were doing.  As has happened before, the legislation would limit a parent’s right versus protect it.  Brave doesn’t fully describe those people who were willing to stand up against it.  Nor does passionate or determined.  In fact, with everything these moms and dads have already done, I can’t think of a word that would do them justice. 

Parents in both states were doing more than just standing up to illogical lawmakers.  They were doing more than just letting their voices be heard.  They were representing more than just their opinions and desires.  Facing their fears, standing up to elected politician, and making quite an impressive statement while at it, is not what they may have envisioned themselves having to do; but they did all of that and more.  That’s because if these parents didn’t stand up for themselves and for their children, legislators could quickly take parental and educational rights away. 

These parents did their best to protect their rights.  They did their best to protect their child’s right to an education, too.  But legislators in both NY and CA were successful with their plan – which took both of those rights away.  This time, with CA’s SB276, s doctor’s right to practice was also jeopardized.  Where they were once able to determine and write a medical exemption for a patient, that decision will now be up to the State. 

Those parents in NY and CA may not have thought that fighting legislation and close-minded politicians would be part of parenting, but they are doing that now because that’s what is required.  What’s required? 

-traveling long hours to the state capitals

-standing in long lines while waiting to gain entry into public hearings

-facing the opposition, many of whom were less than polite

-dealing with uneducated representatives and their staff

-being misrepresented by the media

It also meant mustering the strength to continue to show up even though those who should be listening and helping were doing the opposite, and quite possibly, had planned to do that all along.

By  Cathy Jameson

Last week I wrote about how filling out forms for myn medically fragile son of can sometimes do a number on me.  As much as I’d like to, I can’t escape them.  They are part of life with a complicated kiddo.  I thought I’d get a little bit of a break from having to fill out forms, but a new one showed up in my mailbox after that piece was posted.  

Oh, the irony.  

Since it was a renewal form, most of the information being requested was on file and was actually filled in on several of the pages already.  If all looked correct, I’d just need to verify what was there and return the paperwork to the agency.  If anything needed to be updated, though, I could cross out the old info and add the new.  The document was lengthy.  9 pages.  Double-sided.  Font size 8.  They were asking a lot.  Because of how detailed it was, and because of how someone royally screwed up a similar document a few years ago, I didn’t want to take any chances on the renewal form.  So I made time on a quiet morning last week to go over every question with a fine-toothed comb.  Then I called the office that mailed me the form.  Asking for verification about one section, I was grateful when a representative offered to update the information with me over the phone.  Supplying the answers over the phone would satisfy the renewal process, so I agreed to do that with the rep.

I thought filling out these kinds of forms on my own was hard to do.  

Talking through each question proved to be just as difficult.  

I couldn’t use my upbeat Not Yet replies like I was able to last week.  The answers for these questions and prompts needed to be specific.  They had to be factual.  Scrubbed of any hope, I wasn’t able to say cheerfully that Ronan was so close to finally being toilet trained after all these years! I could only say, “No, he is not independent on the toilet.”  In fact, Not Yet couldn’t be used for any of the questions on any of those 9 double-sided pages.  

Can he make his own meals?  “No, he cannot make a meal on his own.”  

Can he bathe or shower on his own?  “No, he cannot bathe or shower on his own.”  

When I initiated the phone call, I really did think getting this form completed would be easier.  I thought it would be faster, too. I thought I’d save myself some of the heartache that comes with parenting a medically fragile child. I was so wrong.  I had no opportunities to be positive.  No chances to share that progress is being made, even if only one tiny baby step at a time.  Every question, even if answered with a Yes, really meant No.  

Yes, my child is disabled.

By Cathy Jameson

Every few months, I’m asked to fill out some sort of questionnaire for Ronan.  Each form has several categories.  Each category asks multiple questions.  Each question builds upon the previous question.  To be scored as accurately as possible, I know that I need to answer every question as honestlyas I can.  Scoring is important as it can determine an updated treatment plan or therapy goal.  Even so, long before I’m given them, I dread filling out those forms.  It takes a lot of energy for me to start answering them.  It takes even more for me to return them.  I should be happy to finally be done with the task and give the sheets back to whomever has asked me to fill them out--a doctor, an educator, a therapist--but I find that it takes me days to return them.  The dread of getting the results or standardized score can be just as unnerving as was answering each question.  

At this point with how many assessments I’ve filled out, I should be used to this process.  

But I’m not.  

That’s because some answers are hard to swallow.  

Does your child… 

-toilet on his own

-make his own meals

-know how to budget for a shopping trip

As with many assessments, questions and sections become more complex.  On the first few pages, I can usually check off that Ronan can Always or can Usually perform whatever it is that’s asked:

My child will…

By Cathy Jameson

I was able to get some quiet time with Ronan’s younger sister late last week.  She’d longed for a mommy date for a few weeks.  I knew we’d soon run out of time to do a “just us” outing with a new school year quickly approaching.  My schedule was tight, but I was able to squeeze in about 2 hours with Izzy on Friday morning.  She and I got some errands done and were able to have some neat conversations.  The first one was my favorite. 

As we left the driveway, I started out with Three Things.  She was to answer giving only one-word replies to the following prompts:  Tell me three things that make you happy.  Tell me three things that make you smile.  Tell me three people you look up to.  Tell me three things you want to know more about.  Tell me three people you pray for… Izzy couldn’t stick to the one-word reply though with what makes her smile.  She’d answered ‘Ronan’s laugh.’  I told her that that sound was in my top three things that makes me smile, too. 

Izzy’s answers to the other queries were ones I expected her to say.  Names of her best friends, of her favorite family members and of fun events she’d enjoyed with those people peppered several of her answers.  The one where I asked her what 3 things she wanted to know more about didn’t surprise me either.  She replied:  ASL (American Sign Language), vaccines, and the human body.  Each of the topics have been part of hundreds of past conversations she’s heard here in the house.  Where Ronan’s big sister has had more chances to be vocal about those topics, both at home and with peers, Izzy’s been mostly quiet.  In our next conversation, I learned that she’s almost ready to talk about those three things. 

I said to Iz, “Those are interesting.  Can you tell me why you picked them?”

By Cathy Jameson

I went to the pool early one evening with 3 of my kids over our summer break.  We’d have loved for him to join us, too, but Ronan stayed behind.  Previous summers had him at the pool quite a bit.  He’s not interested in swimming as much as he used to be though.  He preferred to stay comfortable and inside that evening, so I left to take a quick dip in the pool.  Ronan can be flexible during vacation time, but why rock the boat?  He was happy, and when he’s happy, we’re happy, too. 

With Ronan not being there and with me not needing to constantly supervise him, I was able to actually swim at the pool.  I did that and also enjoyed watching my other kids play.  Each of them, including Ronan, are like fish to water.  It was so encouraging to see them have fun and to see them be so confident underwater.  When the kids swam to the deeper end, I floated around on my own.  That’s when heard something interesting.  

An older woman was talking with a couple who’d mentioned they had college-aged kids.  Maybe she was hard-of-hearing and couldn’t tell how loud her voice carried across the water, or maybe she didn’t care that other people beyond their small circle could hear her, but this older gal kept talking and talking.  Those of us not in earshot couldn’t help but hear what she had to say.  The more she said, the more I wanted to be part of the conversation.  I floated by and heard her mention Sharyl, as in Sharyl Attkisson. Slowing myself, I treaded water near these 3 people.  That’s when the older lady mentioned another name, Dr. Zimmerman, and continued to share that, as a retired pharmacist, she’d seen a lot.  She'd read a lot, too, including taking time to read about something called vaccine court.  ‘Why would a vaccine court exist if vaccines were so safe?’ she asked.  I nodded my head in agreement and said softly, “She’s right”, and swam closer to the group while preparing to introduce myself. 

I’d have to wait.  The retired pharmacist had much more to say.

‘Look at how many shots kids are getting now also.  Of course, times have changed and medicine has advanced.  But at some point, you have to listen to the parents.  Something’s happening to their kids after they get all those shots.’

“I couldn’t agree more,” I interjected while the gal waited for the couple to reply.  They didn’t say anything, so I continued, “I'm one of those parents, and my son is one of those kids.”

No one spoke, but three sets of eyes now stared straight at me. 

Before adding anything else, I asked myself, Do I keep talking, or do I sheepishly swim away? Years ago I never would have said anything, but as time’s gone by, I’ve gotten more vocal with complete strangers when vaccines come up.  Another minute went by with no one talking, so I took the chance and continued. 

Looking at the older woman, I said, “I love Sharyl's investigative research and really appreciate what she reported.”  I added that not only is she thorough in her news reports, but shared how brave I thought Sharyl was, especially with all the censoring we've witnessed in corporate news outlets.  “She’s shed light on things that the mainstream media won’t touch.  If more people spent time reading up on the topic, like that vaccine court exists, parents may be able to make different decisions about vaccines.  Our doctors didn't tell us much when my son was being vaccinated, nor after he was injured by vaccines.  I learned what I needed to know too late and only after reading on my own...like you mentioned you did.”

‘It's incredible what I’ve learned,’ the older lady offered. 

Note: Cathy is enjoying a well deserved vacation with her family. She thought you might enjoy this best of from Spring, 2017.

By Cathy Jameson

Some people try to tell us that our children’s diagnosis is a gift.  They think it’s something we should treasure.  Forgetting just how very complex it is, some people try to simplify it.  That happens when they say that autism isn’t much more than a different way of thinking. 

If only that were really the case.

For many, including for my child, autism is medical.  It’s loss of acquired skills.  It’s the onset of seizures.  It’s problems with the gastrointestinal tract.  It’s the inability to speak.  It’s cognitive deficits and lack of independence.  That kind of autism exists, but mainstream news tends to show only bright and shiny ‘fee good’ autism stories.  I love to see those heart-warming stories, but rarely do I get to see ones that represent my son. 

Thinking that it may just be a US trend to highlight only happier tales, I looked on some international news pages to see what sort of autism stories they were sharing.  While scrolling through a few of the featured stories on the BBC last week, I came across a few ‘feel good’ piece.  The title of one caught my eye.  The fact that it was medical in nature made me even more curious.  The story wasn’t about autism, but I had to find out more. 

I much prefer to read my news than watch it, but the accompanying clip was too good to pass up.

Imagine.  A devastating diagnosis x 2!  With nowhere to turn.  With no one able to help.  The parents research on their own.  Yes, research.  It proves promising.  It has the potential to help their children.  The parents find a team, a TEAM of medical providers to help them.  The research, the hard work, the never quit attitude and the unique drug that the parents create yields results – good ones!  The girls are improving.  They are gaining skills.  They have a better quality of life.  The family hasn’t found a cure…yet, but everything these parents have done is promising.  With the potential to help other children.  With the desire to reach other parents.  With love, determination and support, the parents have moved mountains.  Others recognize that.  They reach out to the parents.  The parents make themselves available.  How very exciting! 

So why did I feel a twinge of jealousy as the news story ended?

by Cathy Jameson

That title above is the G-rated version we used to use here in the house. Change that last word to something else for the adults, and it’s the same message. Couldn’t figure something out? Google that stuff. Arguing with someone about something and needs facts to back up a claim? Google that stuff. GTS worked when we were out of the house also. With how readily available the internet is on mobile phones, long gone are the days of having to wait until you’re back home to look up information in a book. No need to trek to the library to scour the reference section for data either. One quick online search is all it took!

I’ve shied away from using Google, but this FB memory of mine reminded me just how much Googling I’d done over the years.

Me: Do you have any recommendations?

Nurse: No. You can do your own research. You know your child's needs.

Me: < stifles a smile >

! ! !

When you walk into a medical facility and you're not sure if you should open your mouth or not on certain subjects but you bravely go for it and the medical person sees that you, the parent, are a completely capable, competent human being who can GTS* on their own....all the yesses.

Me: < high fives self > ✋ < smiles > :) Okay. Thanks.

*Google That Sh!t

by Cathy Jameson

When I saw this image and the accompanying questions a few weeks ago, I immediately shared it with my circle of family and friends. Many of them could easily answer the 40 questions. I’d be more curious if their doctors could. I’d guess a handful of them could. I wonder how many could do so without looking any of the information up though.

I was told at a young age when I started school that no question was a dumb question. I believe that to be true still today, especially when the question pertains to vaccines. Every question I saw on @chemfreekids’ page are important ones to ask. Even if someone isn’t contemplating vaccines, knowing each of the answers is important, too. Vaccines are no longer a private topic. They’re now part of everyday discussions and have become a weapon of choice for legislators. I’m all for discussing liability-free vaccines, but I can’t support vaccine mandates some legislators are vehemently pushing. I can never support withholding education or denying employment based on someone’s vaccine status either. But that’s what’s happening here in the U.S. Before more people lose their rights, it’s time to become familiar with accurate vaccine information. I think reviewing and being able to answer the following questions is a good place to start:

“How much do you know about vaccines? Here are 40 solid questions to ask before you move forward with any vaccine. 

1. Name 5 vaccine ingredients.
2. What is MRC-5?
3. What is WI-38?
4. What is vaccine court?
5. What is the National Vaccine Injury Compensation Program?
6. What is the 1986 National Childhood Vaccine Injury Act?
7. How has the CDC schedule changed since 1986?
8. How much money has been paid out by vaccine injury court?
9. How many doses of how many vaccines are in the CDC schedule between birth and age 18?
10. Do vaccines contain aborted fetal tissue? If so, which vaccines? And how many aborted babies were needed before they found one with the virus necessary to create the vaccine?
11. Do any vaccines contain dog, monkey, pig, and human DNA?
12. What is an adjuvant?
13. What is an antigen?
14. Which arm of the immune system do vaccines stimulate?
15. Which arms of the immune system do natural diseases stimulate?
16. What is transverse myelitis?
17. What is encephalopathy?
18. What is the rate of autism in 2017, what was it in 2000? What was it in 1990?
19. What is glyphosate and is it in vaccines?
20. If your child is injured, who will take physical, emotional, and financial responsibility?
21. What was the Supreme Court’s statement on vaccines in 2011?
22. Can you provide a study showing vaccinated vs. unvaccinated health outcomes?
23. Can you show me a safety study proving it is safe to inject multiple vaccines at one time?
24. What is shedding?
25. Do vaccines shed? Which vaccines can shed for up to 6 weeks?
26. Which vaccines are live virus vaccines?
27. What is the VICP?
28. What is SV40?
29. What is MTHFR (methylenetetrahydrofolate reductase)?
30. What is an acceptable amount of aluminum to ingest per day and how much is injected via the hep B vaccine on day one of life? 
31. Can someone who was vaccinated for pertussis still spread pertussis after being exposed to it? If so, for how long?
32. What is the death rate from measles in the US from 2005-2015? From the MMR vaccine in same time frame?
33. What does attenuated mean? 
34. Where can I find information about vaccines?
35. Are there vaccine consent forms?
36. Can the vial stopper cause allergic reaction?
37. Can there be serious reactions to vaccines?
38. What is NVIC?
39. Is there any compensation for physicians who have a certain percentage of their patients vaccinated?
40. What is VAERS?”

How’d you do?

I can answer all but one of those questions above.

To our faithful readers, care to answer one in the comments below? Be sure to leave references or a website for further reading if you do. I’m hoping that those new to vaccines will be inspired to continue to read and learn as much as they can before they find themselves face-to-face with their child’s doctor. Vaccine choice doesn’t exist like it used to, and parents need to know that sooner rather than later.

I wish that I had been asked just one of those questions before my child was vaccinated. I’d imagine one questions could’ve sparked my curiosity to read about vaccines. It wasn’t until after my son was vaccine injured did I bother to do that. Now, after reading and pondering those 40 questions, I could think of a few more that I’d want a new parent to think about. Surely some of you have thought of other questions as well, so leave that thought in the comments also. It’s through others’ stories and through shared resources that I’ve gained the knowledge that I have. I know that’s true for many of us.

To those who constantly question, who bravely answer, and who continue to educate the public and the media about the risks that liability-free vaccines carry, thank you.

By Fiona Jameson

This was one of the essays I wrote for a college application.  During the application process, I was asked to answer a prompt:  How do you think you will be challenged in the STEM field?

-- 

I find myself constantly challenged when it comes to being labeled as someone who’s against science.  If you really knew me, you would know that that does not describe me at all. 

As I grew up watching my brother regress from being a typical child to losing skills and now being completely dependent on my family.  My outlook on what we were told to believe, that the greater good always outweighs individualized patient care, had obviously changed the sicker my brother got.  While my belief does not correspond with the beliefs of society, it is what I know to be true. Over the years, I’ve had to defend my views, including the fact that my brother’s childhood vaccines affected his development.  I was able to do that in several classes and even had the opportunity to present them in a project at the national level.  I may not have changed anyone’s mind, but if there is anything that I have learned about my brother’s experience, it’s that I should speak up when given the chance. 

While there is still much to discover in the STEM fields, to include why some people are more affected by pharmaceuticals and their known side effects than others, we must never assume that the science is settled.  How can it be?  Scientists strive daily to know more about natural phenomenon and how it relates to the world.  I am fascinated by that and am excited to continue to pursue my love for science and learning at the next level.  

--

Fiona was accepted into several schools and was offered a spot in two university’s Honors Programs.  She plans on pursing a Biology major and will follow a pre-Med track. 

By Cathy Jameson

Ronan was scheduled for a procedure last week that would require sedation in a clinical setting.  Procedures, sedation, and medical clinics make Ronan nervous.  All of that makes me nervous also.  Some of my worries were put at ease though.  The day before the appointment, a nurse called to give me a rundown on the procedure.  I was grateful for the chance to hear ahead of time what was going to be expected of Ronan and of me.  I was very happy that the pediatric critical care team knew much of Ronan’s past medical history, too.  Their knowledge and understanding of his seizures, sensory issues, and his inability to communicate verbally put my mind at ease.  So did quite a few statements the nurse made during out 30-minute phone call. 

Besides writing down a few notes during the call so that I could share them with my husband prior to our trip to the clinic, they were such good and reassuring statements that I wrote a few of them down:   

We understand the potential complications and that Ronan’s going to be nervous.  We’ll meet Ronan where he is…that means we’ll work with what he can do and do that at his pace.

You know your child best, Mom.  You know him better than I know him.  If things get too overwhelming, or if he has tried and tried again but can’t go further, you’ll know when enough is enough and be able to tell us. 

We follow the scope of practice, but we will need you to continue to advocate for him like you already do. 

We’re working with him because he’s considered a critical care patient, but we’re here for you, the parent, too.  We’ll proceed once Ronan, and you, are ready for us to. 

I don’t want to make any promises that I can’t keep. 

If I haven’t answered all of your questions, because you may think of some after we hang up, call or text us any time between now and your arrival tomorrow.  No question is too difficult.  If I or one of the nurses can’t answer it, we’ll find someone else who can. 

Most of the questions I had before the nurse called were answered in that call.  But she was right.  After my husband and I reviewed the pre-op notes I’d taken, we discovered we did have a few concerns.  None were too pressing that we couldn’t wait to ask the team when we were with face-to-face the next day.  I had already been given Ronan hints that we would soon be going to see the doctor, so I took the info I’d written down and shared it with him.  I didn’t know how much Ronan would understand, but I needed him to know the basics:  tomorrow was the big day, he’d have to fast until after the procedure, he’d meet some new doctors and nurses, and that mommy and daddy would be right there with him the entire time.  Ronan signed ‘yes yes’ and then did the Sign of the Cross.  Anytime he hears the word doctor, he asks us to pray, In the name of the Father, and the Son, and the Holy Spirit…Amen. 

When we gathered for family prayers later that evening, the siblings all prayed for Ronan and his big day at the hospital.  We prayed for the medical people we’d encounter – that they’d have compassion, and we prayed for Ronan – that he would do well with all the poking and prodding we knew he’d be subjected to.  Most of Ronan’s medical journey has included a lot of questions.  Why this?  Why that?  Constant wondering, constant worrying and knowing that not every test or procedure will come with answers, just more questions, can be unsettling.  So we also prayed for good test results, which could take a few weeks to receive, and that we’d get some useful answers from them. 

True to their word, when we arrived the next day, the critical care team was ready for Ronan.  They’d thought of even more accommodations for our son than the ones I’d mentioned he’d need while I was on the phone the day before—dimmed lights, the offer of warm blankets to keep Ronan warm in the chilly exam room, and use of an iPad to keep him happy.  While getting Ronan settled, they also lowered their voices knowing full well that even though Ronan wears noise-cancelling headphones, he can hear everyone and everything going on around him.  Respecting that he was already nervous, they did not want to be the cause of any more worry for him while talking to us about medication side-effects and potential risks associated with the procedure.  They thought of more than others would’ve thought to have on hand.  Extra effort was already offered, but even more would be required from the medical staff present once the procedure began. 

Once all formalities and were complete, though, the team asked us to be the lead. 

Us?  Me?  Ronan’s Dad?? I could’ve balked.  I could’ve said, That’s not our job!  You’re the nurse, the doctor, the resident, the medical tech, not me!  Do what you’re supposed to, and let us follow your directions.

Source: Inhabitat.com

By Cathy Jameson

I never liked Pink Floyd until I was an adult.  As a child, I thought their music was ‘old people music’.  I apologize for being so naïve.  I liked several other artists from the 1960s and 70s when they were very popular when I was younger, but it wasn’t until I was an adult myself that I grew to appreciate Pink Floyd.  I don’t know if it’s the lyrics, the instruments, the vocals or a combination of all of that that finally drew them to me.  When I hear a Pink Floyd song now, I am immediately mesmerized so much so that I tune everything else out to listen to what’s coming from my speakers.  That happened to me when I heard Us and Them last week. 

Us (us, us, us, us) and them (them, them, them, them)
And after all we're only ordinary men
Me
And you (you, you, you)
God only knows
It's not what we would choose (choose, choose) to do (to do, to do)…

Maybe it’s because I’m older, but the lyrics of that song speaks volumes to me now.  I’m sure being the mom to a medically-fragile child has something to do with it, too.  I didn’t choose what happened to my child, but consequences from events that I allowed, that contributed to long-term medical problems, affected him poorly.  Those consequences affected both of us, and may continue to, for the rest of our lives.  

In the beginning, I thought I could live with the outcome of what happened to Ronan.  He lost skills.  He lost the ability to speak.  Since he had them once before, I figured I’d just work to reverse the damage the vaccines caused and get him those skills back.  Ronan was young.  Time was on our side.  It was just a few vaccines.  Surely, recovery was a possibility.  And I thought I was being naïve about my taste in rock bands…ha!  Recovery is possible for some individuals, but it hasn’t happened for my child.  It is a hope for our family, but I have yet to find full restoration for my son. 

Before my son got sick, I would’ve consider the people we were to be assigned to work with me on an Us and Them level.  In the early years, we saw plenty of specialists and spoke to countless medical people.  But the more intense things got as I looked for help and for answers, Hey, doc, could it be the vaccines that caused this??, it became an Us versus Them situation.  It still is that way when I approach certain people, and I know that other parents have faced similar experiences. 

Us Parents fighting The Establishment. 

Be it a doctor, a nurse, a school nurse, a therapist, a school administrator, a teacher, or lately, a politician or elected official, some people take pleasure in saying no to moms like me.  It takes a lot of patience, time, knowledge, and emotion to raise a special needs child.  As time goes by, one would hope that things might have gotten a little bit easier.  For parents in our community, it seems like some parts of life are getting harder.  We’re not just fighting for our kids’ medical needs and educational needs like in the early days.  These days, we’re also fighting for our rights, including ones that have already been established.  Instead of going forward with some people who sit in positions of power, it feels like we’re going backwards.  Until Us vs. Them dissolves, I don’t think we’ll get a chance to make too much progress.  I do believe that it could be better for both sides.  But the fact that there are “sides” negates that possibility. 

Us and Them. 

Will we ever be able to go back to that?  Complete harmony hasn’t always existed in the world, but could we find time to have civil discussions?  To see eye-to-eye?  To treat each other with respect?  To set vaccine differences aside?  To work together and put children first?  With how politicized everything has become, to include vaccinations, I think we’re a long way off from any sort of Us and Them relationship.  They aren’t willing to work with Us.  And we’re not going to jeopardize our kids or their health for Them.  We did that once already.  It’s something I know many parents will never allow to happen again.

Us vs. Them. 

…who'll deny it's what the fighting's all about?
Out of the way
It's a busy day
I've got things on my mind…

Those lyrics. 

That song. 

When I heard it recently, I was once again mesmerized. 

As I listened to one of my now favorite songs on the radio, I was whisked somewhere else and to some time else, where things were not so hard, where I never had to worry about expressing my convictions, when I never had to defend myself as much as I do today.  I miss those days and pray they will return sometime soon.   

https://www.youtube.com/watch?v=nDbeqj-1XOo

Cathy Jameson is a Contributing Editor for Age of Autism. 

By Cathy Jameson           

Last week I shared that Ronan was getting a little bit sillier.  It’s been a treat to see him interact more with his siblings and to joke with them.  This week, the kids took the initiative with their brother.  Instead of encouraging Ronan to pretend to fall over like he was doing last week, they asked him to really fall but this time into their arms. 

Facing away from your partner, that type of fall is sometimes called a Trust Fall because you have to trust that the person behind you will catch you.  The siblings practiced that carefully together to show Ronan that they’ll always be there when he falls, but Ronan hasn’t caught on how to relax, drop into their arms, and rise up again without assistance yet.  With how much they’re practicing, he’ll get there.  I’m sure of it.  Until he does, I’ll continue to enjoy the carrying on and laughing that fills our house while the siblings help Ronan with all of the motor plan this activity entails.

Half-way through the second day’s attempts, I yelled out Nestea plunge! as one of Ronan’s little sisters stood in front of me and leaned back confidently into my arms.  Ronan laughed.  Do it again! she and his other sister asked.  They knew the game would make Ronan squeal again, and they wanted Ronan to try playing it with them again, too.  The more he sees them tackle a problem, they thought, the more confident he could become. 

I know a little bit about that myself. 

The more I learned to trust myself years ago, the better I became at advocating for my children.  Back when I took everything at face value, instead of trusting my instinct which was nagging me to no end, I put my faith in a human who did not have my best interest.  I thought she did.  I honestly thought my son’s doctor’s goal was to keep my child healthy.  His health was more compromised, though, the more I depended on that doctor.  After I decided to stop listening to and trusting her, drastic changes had to be made.  That's because drastic changes in my son's development had occurred the more vaccines she said he needed.  

When I finally clued in to what was causing him problems, I no longer found myself in a Trust Fall relationship.  It was more like a Trust Fail situation.  I learned a lot about myself during that time and from other unfortunate experiences that followed.  I also learned a lot about people, including whom to trust as well as whom I could not.  I was fortunately able to pick myself up during that time and could also create better environment where my son would have the chance to thrive, not flounder.

I’m meeting more moms now who have been able to avoid circumstances that I was unable to as a younger mom.  They've looked up loads more information than I ever thought to.  They've vocalized more and much earlier to their providers than ever I knew to.  I’m hearing that more couples are working together to preserve their parental rights, something that moms my generation seemed to take on solo.  When I hear from these couples, I’m learning that it isn’t the vaccine and the questionable ingredients that they’re worried about.  It’s the stripping of their rights that has them dismayed and speaking up.

By Cathy Jameson

A few years ago, I overheard something that didn’t sit well with me.  A woman’s son needed some help. The boy, who was wheelchair bound, was positioned closest to his typically developing brother.  Instead of asking her typical son to help his physically disabled brother, the lady got up, walked across the room and fixed what needed to be fixed.  I didn’t know her that well, but I was puzzled at what just happened and asked, “Why didn’t you let his brother help? He was right there and could’ve picked up the book that dropped.”  She said, “Oh, I could never ask him to help. I don’t want him ever to feel like his brother is a burden.”

A burden??   

It’s his brother!  

Sure brothers can be annoying at times, but they can be so much more than that, too.  They can be a friend, a confidant, a teacher, a partner in playtime, and also a role model.  It’s not always the typical brother who’s leading the way either; sometimes it’s the kid with a disability who is positively shaping the life of another.  I imagined that the boy in the wheelchair could offer plenty of teachable moments and learning opportunities to those around him, including to his typical brother.  I also imagined that much of that would’ve been natural learning opportunities as well. The boy in the wheelchair had severe mobility issues and for several years already.  The typical brother only knew him to be disabled. They weren’t living apart. They lived in the same household. Surely, the typical boy could provide some assistance some of the time.  Surely, the disabled brother, who also had speech issues, could’ve used his brother’s help on more than one occasion, too. I didn’t want to judge a fellow parent, let alone a special needs parent, but I just couldn’t understand why she wouldn’t let one son help the other.  Limiting a sibling’s interactions, natural or otherwise, could be detrimental.

I looked over at my daughter who’d accompanied me.  Smiling a sheepish smile at her, I thought, Dear Lord, I hope she didn’t hear that.  Each of my kids do so much for their brother, and they are years younger than these two boys were.  I’d be heartbroken if any of them thought Ronan was a burden.

Over the years because of that sibling encounter that I’d witnessed and because of what that mom said, I’ve been more mindful of how I ask my kids to help their brother.  

Hey, I think Ronan needs help with the putting the Wii disc in.  Can you see if he does?

Kids!  I need a charger for Ronan.  Who has one that he can borrow?  

Guys, Ronan’s sleeping off some seizures – let’s go watch a movie in the other room while he rests.  I’ll set up some snacks for you.

I don’t always preface a request or a demand courteously all the time.  Sometimes, I just tell my children that they need to do something quickly, and I won’t sugarcoat my words when I tell them.  That’s happened when we’ve tried to attend an event that Ronan’s not able to tolerate any longer or if their behavior has become undesirable.  

Kids, we need to go.  Now! Ronan’s not having it, and I’ve got to get him out of here.  

Hey, I’m going to sit in the car with Ronan for the rest of the game.  Tell one of the moms to text me when you’re done.

Guys!  Quit arguing!  The noise is making Ronan anxious.  

I don’t always apologize to them when I’ve had to speak curtly.  I will if we’ve had to abandon their plans because Ronan’s gotten too worked up.  But if it’s typical sibling stuff – like arguing over which DVD to watch, then I don’t apologize.  Typical sibling stuff happens. Typical stuff happens when a non-typical sibling is part of the mix, too.  Ronan’s picking up on that, and it’s rather exciting to see.

Last week, Ronan joked with his sister.  It wasn’t a knock-knock joke or anything that had a punch line, but Ronan walked half-way up a set of stairs and stopped.  He looked at me, and he looked at his little sister. While looking at us is not unusual, the twinkle he had in his eye was.  What was he up to? I asked Ronan what he was doing while encouraging him to continue to go up the stairs. He’s got motor-planning issues, and the last thing I needed was for him to tumble and hurt himself.  His youngest sister fully understood that also. Seeing him freeze in the stairwell, and remembering that he’d had seizures while going up a set of stairs last month, she maneuvered herself behind him and asked him if he could keep going.  

He could.

But Ronan stood his ground.  

Until he lifted one foot off the step.  

And turned toward me.  

And smiled a sneaky sort of smile.  

Holding onto the railing, Ronan pretended go let go of the railing.  Then he leaned backwards. Then he laughed. Is he pretending to fall down the stairs?  Oh, my goodness, he is!

By Cathy Jameson

June 14^th, Flag Day

Dear Diary,

Wherever we lived when I was a child, we had a flag.  At one house, where we had a flagpole in our front yard, one of us kids had the job of raising the flag each morning.  Some days it was a chore for me because I didn’t give myself enough time to raise it as slowly or respectfully as I should’ve.  But as a military brat, it truly was an honor to fly the flag.  Years later, when I was off on my own, I learned about Flag Day, a day when Americans can take a moment to honor Old Glory and what it stands for.  A proud American, I’ve always looked forward to June 14^th.

I always remember one of my students on this day, too.  It’s her birthday today. 

Now in her late-twenties, I think back to that class she was in, which was one of my first (and favorite!) classes, and wonder where she and some of her classmates are.  Through the grapevine, I’ve heard that she may be married.  What a treat to know that “my kids” have matured and blossomed into adulthood!  I’ve kept in touch with a handful of other kids that I’ve taught and am always so touched that they keep in contact with me.  Several of them are parents now, and surely, other of my former students will follow in that role in the years to come.  Like that flag of ours, I’ve always been proud of the kids I’ve been blessed to watch grow up. 

I’ve begun to worry about them, though, Diary. 

The older I get, and the more freedoms I see being taken away, I can’t imagine what sort of world their kids are going to grow up in.  Already across several states, young parents will not be allowed to parent as I have.  One single woman who I’d taught many years ago reached out to me when she’d read that the CDC’s MMR vaccine study was not accurate and was published with manipulated information.  Not yet a parent, I could understand why she was distraught.  She’s a young black woman.  Always so upbeat and kind, I didn’t want to scare her, but I had to make sure she knew the truth.  I confirmed that what she’d read, that the CDC lied to the public and misrepresented their autism findings in young black boys, was the truth.  Would this information change anything for her and for her or her future children? 

I’m sure it would. 

By Cathy Jameson          

They’re desperate.  They have to be.  Why else would we see even more American representatives working so hard to protect liability-free products?  In light of how many state legislators were successful in stripping parents’ rights during the 2019 legislative season, Products Over People! should be the new political motto. 

The latest attempt to safeguard pharmaceutical products comes from the federal level to the people with a cunning title: 

V.A.C.C.I.N.E.  The Vaccine Awareness Campaign to Champion Immunization Nationally and Enhance Safety (VACCINES) Act: The Vaccine Awareness Campaign to Champion Immunization Nationally and Enhance Safety (VACCINES) Act will give the Center for Disease Control and Protection (CDC) resources it needs to understand what drives vaccines hesitancy and barriers to immunization. They will also be able to better track where there are changes in vaccine confidence or refusal rates. With this information, they will be able to predict where an outbreak might occur because of low immunization rates and target vaccine education campaigns to those areas before an outbreak occurs.


When I first saw that, I couldn’t help but laugh.  The title.  The smiling lab-coated doctor.  The reference to the “settled science”.  The V.A.C.C.I.N.E. Act read just like a pharmaceutical ad!  I had to look twice to make sure it wasn’t a satirical piece like from The Onion.  It was absurdly laughable.  Rereading it, I realized that it was not fake. 

Schrier’s bill, which was filed in May as H.R. 2862, comes with all sorts of pharmaceutically-driven statements, which can also be found on the CDC and FDA websites including that vaccines are safe, effective and save lives.  The introduction of it, besides what one would read on pharmaceutical-funded documents, also comes with a complaint from one of the representatives in support of it:

As a medical professional for over 30 years, I find it absolutely ridiculous that we are seeing illnesses that should not be a public health concern now making a comeback.  I sense a great deal of frustration from this doctor, but as a mother of a vaccine-injured child, I find it absolutely ridiculous that a growing number in the medical community, and now in the political arena, are so quick to dismiss informed parents.  Informed parents look beyond Science.  They have to because it failed their child.  Doctors, and now doctors-turned-politicians, don’t want to listen to the parents.  They’ve turn their attention away from those parents and their valid concerns about the safety and efficacy of liability-free vaccines.  Simple questions, like asking why vaccines are being mandated when they contribute to outbreaks of the illness that the vaccine was supposed to prevent, aren’t allowed to be asked.  Doctors could choose to educate their paying customers, but they kick parents from their practices instead of address parents’ concerns professionally.

By Cathy Jameson

Just when I think we can breathe a little sigh of relief, attacks against our community make headlines again.  I expect it more nowadays, but it’s pitiful how much corporate media despises parents in our community.  Who are we?  We’re those who thought to question liability-free vaccines.  We’re also people who stand up against forced liability-free vaccines. 

Image source: Screenshots of headlines

Part of me is in disbelief that our efforts have achieved national spotlight.  But the other part of me thinks, well, it’s about time!  With all of the media’s energy and effort on drumming up vaccine sales and supporting vaccine policy, it’s hard to escape the topic.  Once a private matter, all sorts of platforms have taken on the subject.  Vaccine consumers would normally benefit from having platforms to talk about how their government supports pharmaceutical products that can fail.  But not anymore.  When former pro-vaccine parents in our community speak up, it’s become bad for business.  Unless you’re all for vaccines, even the ones that cause the illness officials claim they will prevent,  it’s not wise to speak up.  Social media giants  are making sure to shut us down, too.  

That’s too bad because it was another parent who took time to take me aside to talk to me about vaccines and the adverse events that can follow vaccination, not any of the medical professionals my son was seeing.  Those professionals wanted me to keep on vaccinating, even though the illnesses and medical problems he was having presented post-vaccination.  When I tried to point that out, I got a sympathetic look and one of these pat responses:  Vaccines are best.  They’re for his health.  We believe they’re for the greater good.  And hey, he needs them to get into school, too.  I got nowhere with medical people.  Other parents, who were never judgmental and who were always willing to share their time even though they, too, had a child with special needs, were quick and happy to help me.   It’s through their knowledge and guidance that made me realize I how little I knew about vaccines, including that they could cause serious issues.   

Sadly, some parents are still very late to the party and are only now being made aware of table injuries,  of Vaccine Court, and of the National Vaccine Injury Compensation Program (NVICP).  But ironically, thanks to the media perseverating on vaccines, those aspects of vaccines are finally part of the conversation.  Parents who’ve reached out to me privately recently are none-to-pleased that they have never been made by aware by any medical person that injuries are possible.  Never have they been informed that the NVICP exists either.  Imagine their shock when they realize that our government has paid out over $4 billion to families for vaccine injury and death.  These parents might not get the whole picture from their doctors, but with the media’s incessant vaccine postings, at least new parents are beginning to learn what several of us did not learn in time – that not every vaccine is safe, and not every vaccine provides benefits. 

By Cathy Jameson

Ronan has a few favorite things – books, songs, movies, and words.  One of his favorite movies is the original Dr. Seuss Horton Hears a Who! cartoon from 1970.  He found it on his own on Youtube and really loves certain parts of it.  He loves showing us the silly Seuss-inspired musical instruments from the story also.  Pointing carefully at his iPad so as not to rewind or fast forward the scene, he turns to us, stares intently at us to get our attention, and waits for us to say some of his favorite words of objects he sees on the screen:  drums, cymbal, trumpet.  I love the eye contact and the attention he shares with us in those moments.  I don’t always love the repetition of him playing the movie over and over again, but I love that he finds joy in parts of a story that I sometimes overlook. 

Ronan’s played another clip from that movie over and over again before.  It’s toward the end where the Whos from Whoville all chime in together and yell, WE ARE HERE!  WE ARE HERE!  WE ARE HERE!  Their lives were in jeopardy.  Something had to be done to prevent a terrible tragedy.  Working together, it took the entire population of Whos to let Horton’s jungle-mates know that they existed.  It’s a great scene with a powerful message, but from mid-January through most of February, that was the one and only part of the movie that Ronan wanted to play.  At one point when he would not stop rewinding and replaying that part, I looked at Ronan and thought, puh-leeze, kid, find something else to listen to!  But then, when I heard him play that clip multiple times the next day, I thought, Wait, am I missing something?  I know he’s here.  I’m sure he knows I’m doing everything I can to help him, too.  Since Ronan’s used parts of movies and songs in communication efforts before, I wondered, Is he trying to tell me something??  When I saw that he was just fixated and perseverating on the scene, I got tired of hearing those Whos yelling.  I asked Ronan if he could please either lower the volume or find another movie to watch.  By the end of that week, he’d moved onto watching a different film. 

I got some reprieve, but then, about 4 weeks ago, Ronan started listening to Horton attempting to save the Whos all over again.  Oh, no. I thought.  Here we go again.  But the times Ronan would replay that specific scene were uncanny.  I’d hear it after I’d tell the family about the challenges and the threats other parents across the country were facing.  Those challenges were stemming from liability-free vaccine legislation – from the Jewish families in New York, to the freedom fighters preparing to oppose SB276 in California, to the Mainers raising their voices about LD 798, to the group of parents rallying in Connecticut to protect their parental rights, there was much chatter in our family about vaccines over the last few weeks.  Ronan has a lot of deficits because of his disability, but his hearing is not affected.  He hears everything and will react to what he hears.  Vaccine-related stories around the United States and in our home were intensifying.  So was the frequency of Ronan playing that clip about the Whos from Whoville  (that part begins around minute 18:45).  

Source: Screenshot from the video

By Cathy Jameson

A couple of years ago when we discovered that Ronan was getting better at typing, I asked him to fill in a few short sentences.  When he was finished, I couldn’t wait to show the rest of the family.  We were all so excited to see his responses! 

Mom is mom.

Dad is dad.

Ronan is wii bowling.

Izzy is nice.

Fiona is love.

For years, Ronan would only tell us what he wanted.  I got used to his one-word requests, either by sign or his typing attempts, but craved to know more.  Getting Ronan to the next level, like knowing what he was feeling, would take some time.  It’s neat to see that he can do more than just make his wants known like this one from 2011:

PLAY MOVIE YES

NEW MOVIE YES

TRAIN

I WANT MOVIE

I love that Ronan has learned that his ability to communicate is important.  One word at a time, he has been able to tell us not just his wants, but also his needs.  When it’s too cold in the room, he types cold and asks for assistance to put on a jacket.  When he’s upset with someone or something, he will now quickly type “feel sad” or “feel angry”.  With prompting, I’ve been able to help him type full sentences.  Since much of his communication still includes requests, I ask him to be polite in making them – address his helper and add please or thank you. 

Non-verbal autism severely limits Ronan.  Patience, determination, and his brave attempts at trying to talk while he’s typing continue to keep me hopeful though.  His latest vocal outputs and his growing receptive language skills are encouraging to hear and see.  Since he can comprehend much of what is going on around him, I try to find new opportunities for Ronan to join our activities and to find out more about what he’s thinking about.  While we’ll always hope and pray for verbal speech, lately, we maintain the focus on writing and typing with Ronan.  I’m glad we are.

By Cathy Jameson

One of my kids shared that they’d overheard a vaccine conversation earlier in the day.  They couldn’t figure out what sparked the discussion.  But, at one point while the other people were still talking, one of them turned to my child and said, “Hey, your mom is anti-vax, right?”  I guess according to the media’s definition, I am.  But if you really know me, or care to dig a little deeper than believe a superficial label that the media brands me, I am more than just an “anti-vaxxer”.  I wrote about that  not too long ago. 

Depending on who’s said it, being called “anti-vax” can be an insult.  The way it was said toward my son most likely wasn’t.  I know that my child’s peers didn’t mean any harm while referring to Mrs. Jameson as "anti-vaxxer".   They were just repeating what the news says about moms like me.  Most of my kids’ closest friends respect me.  Some even think that I’m really nice!  When they see me, they are respectful.  When they see me with Ronan, they are even more courteous.  They show only love toward Ronan. 

Seeing him and asking about him as many times as they have over the years has opened their eyes about autism, about the ongoing struggles he faces, and about his medical history which includes a vaccine injury.  Because of their curiosity, which I always welcome, they’ve come to know that based on our family’s personal experience, we believe differently than they do about a few things.  That includes vaccines.  Liability-free vaccines are not as safe, effective, or life-saving as they and their families may believe.  Vaccine injury is not their reality, and I’m very grateful for that.  I don’t begrudge them for not knowing as much as we know, but I will always hope that they will politely agree to disagree with me, and my kids, whenever the topic comes up. 

Not too long ago, people were allowed to believe differently than their neighbors did without any drama.  That practice doesn’t hold true today.  Nowadays, when people disagree on a topic, it’s grab the knives and pitch forks!  Go after them!  Ruin their reputation!  Drag their name through the mud!  Repeat lies about them!  That’s become especially true when people, like parents like me, speak out against liability-free vaccines.  Needing someone to blame for the rise in vaccine hesitancy, we’re attacked by industry spokespeople every time a vaccine story hits the news wire.    

It shouldn’t be that way, but that’s what I see going on.  Like a spoiled child, the media and its backers want to blame someone else for something they can’t control.  They can’t control parents who have become vaccine smart.  Instead of finding fault in the US vaccine program (which is not perfect), in the US government (for their overreach), or in the vaccines themselves (which all come with risk), the media has chosen to blame all of the “anti-vaxxers” for all of the vaccine problems.  Having the means and the platforms to build up communities, the media encourages the public to pit neighbors against neighbors, school children against school children, doctors against rightfully worried parents.  

The “anti-vax” are the ones responsible for all outbreaks – even though some outbreaks have occurred in the vaccinated. 

The “anti-vax” are the ones ruining the herd immunity concept – even though it’s just a concept and even though vaccination rates are high in several states.

Note: I'm calling Mrs. Jameson Cathy Gaga today. Her message? "Just dance! It's gonna be ok...."  That happens to be my Gianna's favorite Lady Gaga song.  Enjoy this fun post! Autism month is almost OVAH!!!!

By Cathy Jameson

I had to wait until the end of April to create my Autism Action Playlist this year.  I usually have several songs queued and on replay by now.  But I gave up listening to music for Lent this year.  I’ve given up other simple pleasures before, but this year’s sacrifice really had me aching for my tunes.  With all the ridiculous measles stories popping up in my news feed this year and throughout this month, I wanted to drown out the madness with my music.  I didn’t want to break the Lenten fast though, so I stayed true to my promise.

I knew I’d made a good choice in picking giving up music when the kids expressed how much they missed having the radio on.  Ronan’s siblings love a good song just like I do.  They love to fill our house and car rides with songs that keep us all smiling, too.  Even though I decided to turn the music off, I could think about it.  Songs from my past, songs I had just started to like, and music that normally calms my soul were not too far from my mind these last few weeks. 

With Easter season now in full swing, it’s time for me to turn the music back on.  With that, here is this year’s playlist with a brief explanation of why I chose the songs I did.  Hear something you like?  Get up!  Shake your booty, and go dance in your kitchen.  That’s what the kids and I do when the music moves us. 

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World Destruction – I first heard this song when I was running track back in the mid-80s.  A friend from high school turned me on to it.  I liked it so much that I taped it off the radio and played it on my knock-off Walkman right before my races.  The lyrics and the beat pumped me up and round and round the track I’d go!  I’ve heard the song only once on the radio since then, so I’ll play it online every now and then.  I find the message more appropriate today than when I was a teen.  Certain issues, including parental rights, are important and are absolutely worth fighting for.  The people who should give a damn about protecting them don’t though.  Heading for destruction, it pains me how messed up the world seems to be these days.   

In My Blood – Doom and gloom aside, we have options!  Even if …sometimes I feel like giving up… I won’t give up.  I can’t.  Ever!  It’s tempting, but that’s when I reach out to a friend to help me get back on track.  Things get better when people work together.  Even if the walls are caving in, as it sometimes feels they are lately, I know that we can make a difference.

Shawn Mendes - In My Blood (Terry Kingsley Remix) from Terry Richard Kingsley on Vimeo.

By Cathy Jameson’s Kids

Last week, we heard that there was a National Siblings Day.  National Sibling day is a day to celebrate your brothers and sisters.  Some people did that by sharing their pictures on their facebook and Instagram pages.  For today’s Sunday post, we wanted to share a little bit about what it means to be a brother and a sister to Ronan. 

The autism he has and that we experience makes Ronan not be able to speak.  It makes him unable to do things that other people can do.  It also makes it harder for him to walk.  He has lots of medical issues which means things are tough for our brother. 

One thing that makes me, Ronan’s youngest sister, very sad is when he is unable to speak and he gets upset and he starts banging his knees to tell me he is really sad.  That happens when I can’t understand him.  I try to help him and he knows I’m trying.  But my favorite thing to do with him is to play with him and make him laugh.  I made him laugh two nights by saying his favorite word, which is colors.  I start spelling it one letter at a time: c-o-l-o-r…and he has to say the last letter.  He actually said S!  So I did it again.  C-o-l-o-r…and he said S again!  It made both of us laugh. 

When I think about what autism is like for Ronan, I, Ronan’s younger sister, know that it means he’s not being able to do as many activities as we can do.  It means he has trouble getting us to know what he wants because he has no speech and because of his disability.  His brain works a little slower sometimes, too.  That doesn’t stop him trying to tell us stuff.  Sign language, typing out what he wants on his voice output device, and encouraging him to say letters individually are some things I do with him to instruct him.  He’s happy when I do that kind of stuff with him. 

When he does try to speak to me it’s harder to have meaning behind it (he makes more vocal sounds than verbal words).  I’m Ronan’s younger brother and like that he’s trying, but it’s hard for other people to understand it and him.  He gets frustrated a lot.  Every night we pray for Ronan.  I ask God to help Ronan to be able to expand his vocabulary and be able to use it by speaking to us.  We know that Ronan knows a lot of things, but he’s stuck trying to get those thoughts out.  I want to know what he’s thinking.  I also want him to play with the rest of us.  He’s a really fun kid when he wants to play with me.