By Cathy Jameson

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

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

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

She said no.  

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

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

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

WEAR A MASK

MASKED REQUIRED BY EVERYONE

KEEP MASKS ON AT ALL TIMES

DO YOUR PART!!

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

By Cathy Jameson

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

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

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

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

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

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

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

By Cathy Jameson

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

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

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

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

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

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

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

Kim's Daughter Bella when Police Had Visit Day

By Cathy Jameson 

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

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

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

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

Then, it hits me.

That's my kid.

And he's on the police bulletin board.

Because he's a person of interest.

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

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

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

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

"Daddy!! PEOPLE!!!"

By Cathy Jameson

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

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

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

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

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

by Cathy Jameson

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

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

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

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

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

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

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

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

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

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

By Cathy Jameson

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

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

“Hello?” I quietly answered. 

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

Breathe.  Breathe.  Breathe. 

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

“Hey, Cathy.  I need some help.” 

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

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

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

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

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

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

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

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

By Cathy Jameson

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

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

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

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

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

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

#MeetBillGates

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

By Cathy Jameson

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

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

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

Some clinics are suggesting catch-up shots as well.  

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

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

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

by Cathy Jameson

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

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

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

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

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

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

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

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

By Cathy Jameson

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

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

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

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

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

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

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

Surprisingly, many young parents know quite a lot already!

By Cathy Jameson

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

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

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

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

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

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

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

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

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

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

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

via GIPHY

By Cathy Jameson

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

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

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

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

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

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

Album cover The Eagles Hotel California

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

By Cathy Jameson

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

Trying times for sure…

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

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

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

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

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

By Cathy Jameson

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

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

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

Enjoy! 

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

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

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

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

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

By Cathy Jameson

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

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

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

How ironic.

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

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

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

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

By Cathy Jameson

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

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

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

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

No, never, we tell them. 

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

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

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

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

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

By Cathy Jameson

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

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

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

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

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

Aaaaand it's April 1, 2020.

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

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

Love to all our readers.  Kim

###

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

###

Aaaaand it's 2015.

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

By Cathy Jameson

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

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

By Cathy Jameson

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

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

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

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

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

By Cathy Jameson

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

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

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

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

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

Reading for leisure

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…