Cathy Jameson

A Thousand Steps

Journey  never stopsBy Cathy Jameson

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

Oh, that’s great! 

He wakes up dry, too.

Even better! 

How are his mornings?  Do you get much done?

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

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

How many hours of therapy does he need?

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

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

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

Like sitting on the toilet??

Wouldn’t that be a dream come true! 

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

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

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

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

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This Is Autism

App reality
By Cathy Jameson

Ronan needs full assistance for many of his daily living skills.  It makes for a lot of work on my part, but I do love that he understands more prompts this year compared to last year.  Baby step by baby step, these skills can help lead to more independence.  The latest one we have been working on, “Time to get your shower.”  He did it!  I just need to be one step ahead of him next time to help with his pajamas because, boy, was he ready for his shower right after he got up this morning.  Go, Ronan! 

TIA 1

I shared that picture and that note above on one of my social media accounts last week.  I posted it not just because it was a pretty cool photo if I do say so myself, but because it was so perfectly us.  If I had a file for photos such as that one, I’d name the file This Is Autism

Thinking about that photo and why I took it – because, in our house, that really is autism, I remembered a few more images that also fall into that category.  They include the siblings, the work it takes to keep Ronan safe, loads of emotions and a brief story about why I wanted to freeze that moment in time.  The severity of autism that Ronan displays is so often downplayed in the news and on feel-good TV shows.  Because of the misrepresentation and limited exposure of non-verbal regressive autism, people don’t realize how difficult life can be for the child with that diagnosis.  Whey won’t ever understand just how draining it can be on the caretaker either.  It is tiring.  It is frustrating.  It is why some parents are afraid to die.  With the autism rate at 1 in 40 and rising, who will be left to take care of our child as well as we have?  Who??

The autism we live may not be what the media or the public believes autism to be, but it’s our story, our reality, our truth.  Care to see what that looks like and how much more complicated it can be?  Continue reading.  If you do continue to read, please keep in mind that as I share these images, they are posted in the hopes of educating others.  Life with autism has ups.  It has downs.  It can be frustrating and loud and confusing.  Thankfully, those living life with autism bring moments that are also rewarding.  No matter what has happened as a result of autism, I always remember afterward to find the joy.  The main subject of my photos reminds me to do that daily.

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Life After 40

40By Cathy Jameson

I was at a physical therapy clinic with one of the kids last week.  While my daughter was getting settled in with her exercises, I scanned the room and saw a handful of staff and patients.  Everyone was engaged in whatever activity or job they were assigned to do.  Even as busy as they were, there were several conversations going on.  With how open the room was, I couldn’t help but hear bits and pieces of the chatter going on.  No one seemed to mind which is why one of the PTs had us all laughing when she wisely and loudly told the young twentysomething male PT assistant, “Just you wait!  When you hit 40, it’s all downhill from there.  Mark my words… enjoy yourself – and your body - now while you can.”  A few of us fortysomethings nodded our heads in agreement.  Then the entire room erupted in laughter, including the other PT assistants who enjoyed the ribbing their co-worker had gotten. 

Life after 40.  You’ve probably heard the jokes:

Forty is when your body…

Gives your brain a list of things it’s not going to do anymore!

It’s a cruel irony that when you get to be two times the age of a 20-year-old…

You only have half the metabolism!

40 is when you finally get your head together…

And your body has other ideas.

After you turn 40…

Every time you suck in your gut, your ankles swell!

It’s all fun and games turning 40, unless you’re talking the autism numbers

1 in 40.

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A Pox on the Media

Arthur chicken pozBy Cathy Jameson

Chicken pox was in the news again.  Quite a few children from a school in North Carolina have come down with it.  Local media quickly picked up the story.  National and international media outlets copy/pasted that story and turned it into a major headline.  When my kids caught the chicken pox, it wasn’t front-page news.  But that was way back then.  Today, things are different.  I noticed how different with each news story I read over the last two weeks. 

It wasn’t so much that children caught a childhood illness that was being reported.  More focus was on the parents of these children.  Making sure to point out that the kids were at school with a religious vaccine exemption, as they have every right to be, the parents were made out to be irresponsible.  What a world of difference life is for today’s parents whose children get sick with chicken pox compared to those depicted years ago.  Name calling was non-existent.  Judging a parent and their beliefs was unheard of.  As was the case when my kids came down with it, chicken pox and the temporary inconvenience it’s known to bring, was simply part of life.  I was reminded of that after seeing two television show reruns about two months ago that included characters coming down with chicken pox.  After seeing those shows, which were quite popular when they originally aired, curiosity got the best of me.  How many other shows used this illness in their stories?  I had to find out. 

The more titles I searched, the more shows I found that included chicken pox!  What was interesting to note was the media Cailloux chicken poxnever swooped in to badger any of these characters.  Why would they?  As Arthur’s father states matter-of-factly in the kid’s show Arthur, the media would never be involved in the storyline because, “It’s chicken pox.  It’s just a normal childhood illness.  I had it…your mom had it…”  (Season 1, Episode 18; 1997) https://www.youtube.com/watch?v=__aSJkgOyrc No big whoop, right?  Same goes for Caillou.  He’s also told by his mother just the facts, “You won’t be sick very long.  You’ll see.”  And how right she was!  He really would be outside playing in the garden soon enough.  (Season 1, Episode 52; 1997)

Since it is a contagious disease, other shows were sure to feature multiple characters being sick.  Several family members from Full House dealt with the disease together in A Pox in Our House (Season 1, Episode Full house chicken pox15; 1988).    I don’t usually read YouTube comments, but I started to while looking at this clip.  If you read through them, you’ll see that most are positive and about the cuteness of the events in the episode.  Seemingly out of the blue, one person chimed in stating that a chicken pox vaccine was not around when this show aired.  While one was not licensed here in the States until 1995, a live attenuated virus vaccine had been in production in Japan as early as the 1970s.  It wasn’t until 1988 that a chicken pox vaccine was released in Japan and also in Korea. 

Vaccine availability or not, shows that aired beyond the year 1995 continued to include chicken pox-themed content.  Writers of children’s and family shows, as well as prime time sitcoms, continued to add humor to these scenes as well.  That was apparent when Chuckie, from Rugrats, was convinced by his pals that the chicken pox was going to turn him into a real chicken in the Chicken Pops story. (Season 4, Episode 4; 1997).  That’s just a short clip.  The full episode can be seen here but requires payment. 

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Autism on the Sidelines

No act of kindnessBy Cathy Jameson

Until another person walks in our shoes, they may never truly grasp how challenging life can be for those with autism and vaccine injury as well as for those who care for them.  That said, I think it’s important to share our stories whenever and wherever we can.  Not that we have to prove to anyone that our sacrifices are real.  Those sacrifices are as real as the vaccine injury that changed life as we knew it. 

That thought has run through my head several times over the last few months.  Since late August and up until last week, Team RonanRonan's siblings were participating in team sports.  Multiple times a week, I was dropping off or picking kids up from late afternoon practices and evening games.  Some days, friends blessed me and took over carpool duties.  As much as I could, when three kids were in three different directions at three different sport venues, I still tried to get to their games.  With Ronan and my youngest in tow, getting to everyone wasn't easy.  Just getting out of the house took effort on Ronan's part. 

When he was successful in getting himself to the car without incident, any time I buckled Ronan in, I hoped and prayed that he'd be accommodating to what was next on the schedule.  After traveling, he’d be tasked with sitting for at least one hour on the sidelines while I cheered loudly for whomever was on the court or the field that day.  When we could, we’d even try to get to two events which meant twice as much sitting and twice as much cheering.  Sitting and listening to me cheer for his siblings is not Ronan’s favorite thing to do.  Regardless, I prayed that he would be patient and engaged in the items I'd brought for him so that we could stay until the final whistle blew.  Happily, Ronan did a great job no matter on which stands, home or away, we sat. 

As we left the final event for my oldest daughter recently, one of the staff at the high school recognized and greeted me.  I'd met this woman last school year after an unfortunate parking lot incident.  Not one to complain unnecessarily, I'd kept quiet about what I’d seen previously in the parking lots.  But this time, when another driver's attitude was just so rude, I knew I had to speak up.  Even though we were only a few weeks into the school year, I'd seen one too many cars parking or blocking the handicapped parking spots on school grounds.  Besides the fact that it's illegal to take these spots unless you've got a handicap placard, it was royally screwing up Ronan's chance for success.  Once he gets in the car, we pray earnestly that he'll want to get out of the car when we reach our destination.  This rude driver didn't care about Ronan, or the fact that they were breaking the law, and offered some unkind words in my direction after I’d asked them to move and park in one of the many open regular spots just a few feet away. 

It doesn’t matter what your title is, how rich or poor you are, or where you grew up.  What matters is if you have compassion toward others, especially toward those who struggle. 

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Autism's Offerings and Sacrifices

NeighborBy Cathy Jameson

At Mass last Sunday, one of the verses in one of the readings stayed with me through most of last week. From Chapter 12 of Mark’s Gospel,“…to love your neighbor as yourself' is worth more than all burnt offerings and sacrifices."

That’s the second part of a reply Jesus gives when He’s asked what the Greatest Commandments are. Over the course of my life, I’ve heard Love your neighbor as yourself countless times. But it wasn’t until last week that I really reflected upon the rest of the verse. As I pondered it, especially the part that says, “…[it] is worth more than all burnt offerings and sacrifices,” I was reminded of a few people.

The people who stuck out the most in my mind were the ones who’ve been in the thick of things just like I’ve been. They are from all walks of life and with varying backgrounds – medical professionals, educators, therapists, counselors, homemakers, businessmen, and businesswomen. Not only is our background completely different, so is our political thinking and so are our religious beliefs. Despite that, we share so many similarities. That’s because autism and vaccine injury do not discriminate. They, too have a child with regressive autism. These other parents have experienced the same emotions that came with that diagnosis like I have. They’ve made as many sacrifices as well.

Since Ronan got sick over a decade ago, I’ve met other people, too. Also from all walks of life and with varying backgrounds, I’ve met people who've been sympathetic when I share the story of how drastically life changed for my son post-vaccination. I appreciated that they at least offered to listen. Several took what they heard me share as a warning. Others didn’t. They used it against my character. That’s only happened a few times face-to-face, but some people I’ve “met” online have been less open-minded and courteous with their replies. They’ve been judgmental and downright rude when I offered the details of how my healthy child started to lose skills after a round of shots. Saying that I don’t know what I’m talking about or that I’m just one of those anti-vax ‘crazy mothers’, they left conversation angry at me instead of enlightened. It isn’t very neighborly of them, but I don’t mind being called a crazy mother. Crazy mothers get things done. They start schools, they write books, they help pass state bills, they donate their time, and they go to Congress to speak up.

The new generation of crazy mothers, the younger mamas, have taken to speaking up by taking to the airwaves via podcasts, Facebook live, Periscope, and YouTube. I’m not saying that I know of any veteran moms haven’t, because they have done that also, but I couldn't have asked for better new recruits to fall in with us. These moms are calling our representatives out. They’re confidently calling out industry leaders, too.  (My favorite from that clip is Hillary’s comment. Start at minute 8:20. If you’ve been at this as long as I have, I think you will not be disappointed in what she has to say.)

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A Price to Pay

SoapsBy Cathy Jameson

A few weeks ago my son needed a haircut. Unable to get him to the place he likes to get a trim, I had to take him to a different place. He didn’t get the best cut like he did the time before, but it got done. I told Willem I’d do better to get him to his regular barber next time. It’s a great little place where he normally goes. I’ve only ever had one problem there – the television stays on and loudly. With how the chair was situated during his last cut, Willem had a completely unobstructed view to everything on the screen. I’d have been absolutely fine with that, but I was not too keen that he watched a daytime soap opera for the first time that day. Let’s just say that I had to explain more of a steamy plot than I’d have liked to.

While Willem winced and tried to look away from the TV during the hot and heavy soap opera scenes, I was already preparing a quick chat with him: Hey, Little Buddy. Yeah, some of that show’s content…wowzers! It certainly wasn’t for kids, but that stuff does happen. The lies, the cheating, the scandalous affairs and the backstabbing. That’s part of real life for some people. On our way to the parking lot, I did say all of to my son. He replied, “Yeah, I know. But geez, the actors were so fake and too over-the-top.”

I agreed, “Yep. It’s a little worse than when I was a kid, but that kind of drama has been part of television for as long as I can remember.” Before changing the subject about having Pharma tvenough time to go grab lunch together, I wanted to ask him one more thing, “What else did you notice?” Immediately, Willem shared, “Oh, the commercials. Mom, they were so…strange. Most were pharmaceutical commercials.”

He learned quickly that one cannot avoid the onslaught of pharma ads when tuned into a mainstream media television station.

Ronan’s younger brother continued, “Geez, did you hear all those side effects they can cause? They make the actors look all happy and life is perfect while they take the drug, but the side effects they list. They can cause other problems, some pretty bad ones, too. And some may cause death! That makes you need to get other medication. Well, you can get more meds for the side effects as long as you haven’t died from the first drug’s side effect: Here take this pill and it’ll help your diabetes but – be careful, you may die if you take it! It’s crazy. How’s that for getting you healthy? I guess it’s just a price you have to pay.”

Exactly.

“You take a risk in using the medicine they’re paying a lot of money to advertise,” I started. “And if something bad happens when you take that drug, you deal with the consequences, not the doctor who prescribed it. You have to live with the damage that’s done and hope that it can be reversed.” Willem and I returned to that conversation the other day when we were home. It happened after we watched an old 80s show we found online that included every commercial break. During that 60-minute show, not one prescription drug commercial was aired. Over-the-counter ads were part of the hour-long episode, but nothing needing a script.

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Tag! You're It! Infection

SwingBy Cathy Jameson

I was at the playground with youngest the other day.  It was one of the first real fall days we’ve had and a perfect day to spend outdoors.  As my daughter and I held hands walking from the parking lot to the playground, I could see a bunch of kids running all over the place.  Some were climbing, others were sliding, and a large group was playing tag.  Some stood still as if they had been frozen.  Ah, Freeze Tag.  I remember it well.  But when I got closer, I listened to what the kids were saying – Help, infection!  Do you need healing?  Yes, save me!  What an odd conversation.  I slowed down my pace so I could keep watching.  With a simple touch, the Healer tapped an infected boy.  That simple tap released him from his frozen stance.  What an odd game! 

I later learned that it wasn’t Freeze Tag.  It was a game called Infection.  I remember my oldest daughter telling me about the game back when she was still playing on the playground.  “It’s just like the original Tag game, and also like Freeze Tag, but has some different elements.” 

I’ll say it does! 

Instead of continuing our walk around the playground that beautiful fall day, I stuck around and quietly listened some more. 

“Help me!  I need healing!” another boy yelled to a group who’d just run past him.

“Don’t touch him…he’s infected!” a girl squealed as she scampered off.  Constant chatter could be heard as “zombie” kids zipped around the monkey bars toward the slide.  Push chair cj

RUN!

Who’s infected? 

She is! 

Who needs healing? 

Getting caught up in the excitement, I wanted to yell out, “Ronan does!”

Oh, how we’d love to see that happen.  One of my other daughters desperately wants her brother to be healed.  She and I stayed up late one night last week talking about Ronan.  Izzy had heard a conversation about vaccines and was curious about the adjuvants, like aluminum, that are added to some of them.  She knows that some kids cannot detox metals and could be worse post-vaccination than pre-vaccination. 

“Why do people think we’d be better off with all that stuff in our bodies?  It doesn’t make any sense,” she said.

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Flu Shots During Pregnancy: Insufficient Data to Inform Vaccine-Associated Risk

Vax PregnantBy Cathy Jameson

Back when I was pregnant with my younger son, I asked for a flu shot.  I’ll never forget that day.  I was about four months pregnant and going in for a check-up with my OB.  Looking haggard and desperate, I had just left the hospital where Ronan had recently been admitted.  Once in the exam room, I told the nurse that I only had a few minutes for the appointment because I needed to get back to the hospital. 

I don’t remember the entire conversations, but I do know that I shared that, “Ronan’s sick…the croup…terrible cough…several breathing treatments…also has the flu…yes, had the flu shot, too…so strange!  I don’t want to get sick or jeopardize my baby (in utero)…do you have flu shots here for me?”  Sympathizing with me, she said she was sorry but that I was out of luck.  They didn’t have any.  Citing a state-wide shortage, they’d run out only days before.  The nurse suggested I call my primary physician but warned me that local doctors had exhausted their supplies also.  Those who had any left were offering the shot only to children or the elderly.  They were top priority.  I was flabbergasted. 

What about me?!

I walked out of that office so worried.  The flu!  It’s awful!  It’s only going to get worse!  Get the shot – it’s the only thing that’ll save you!  The news was selling more fear than facts that year and would continue to do so until the end of the annual flu shot season.  Tired, pregnant, and feeling lost, those next few weeks were not an easy time for me.  But knowing our family’s medical history now, I can only imagine how damaging that flu shot could’ve been for Ronan’s younger brother. 

Back then while pregnant with my second son, I thought I was doing me and my baby a favor by confidently asked for flu shot.  Since I couldn’t and didn’t ever get one, I know that I escaped the risk that comes with it.  Some women today don’t escape that.  These days, they don’t have to ask for a shot like I thought to.  They’re being told to get it.  Some do and possibly without realizing that what they’re being told doesn’t match up with what’s in the vaccine inserts: 

Safety and effectiveness of FLUARIX have not been established in pregnant women or nursing mothers. Belly cj

There are insufficient data  on FLUARIX QUADRIVALENT in pregnant women to inform vaccine associated risks.

There are 0   for AFLURIA in pregnant women to inform vaccine-associated risks in pregnancy. 

It is not known whether AFLURIA is excreted in human milk. Data are not available to assess the effects of AFLURIA on the breastfed infant or on milk production/excretion.

Safety and effectiveness of Fluzone Quadrivalent Southern Hemisphere have not been established  in pregnant women or children less than 6 months of age.

Safety and effectiveness of FluMist Quadrivalent have not been established in pregnant women, nursing mothers, geriatric adults, or children less than 2 years of age.

If that’s all true, how’d this story make the rounds last week?    It’s saying something different – that the flu shot protects women and their babies.  It doesn’t do that just during the pregnancy but after pregnancy, too. 

After reading that news story that sounded more like a vaccine advertisement this week, I just sat and shook my head.  How can they say that the flu shot is safe and effective for pregnant (and nursing mothers) when the literature from the government agency that approves vaccines says otherwise?  How confusing!  More confusing is that other vaccine package inserts, like the Tdap, also include that recurring insufficient data statement.  Pushed heavily on pregnant women – and on family members wishing to hold the baby, the data about pregnancy and vaccines doesn’t seem to add up.  So, just like last week when the flu stats didn’t add up,  I had to keep reading. 

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Flu Stats: When the Numbers Don’t Add Up

Flu deathsBy Cathy Jameson

I read that more than 80,000 Americans died from the flu last year.  For years, a much lower figure of 36,000 deaths usually circulated in the news.   At one point, the CDC gave a different estimate of 3,900 to 49,000. I couldn’t recall seeing numbers as high as 80,000 before, so I did a little bit of reading about the flu and how it’s tracked.  With how many national, state, and local webpages there are devoted to flu statistics, I learned a lot!  I haven’t had time to go through everything there is out there, but with that glaring headline that’s making the rounds I’ll be sure to keep reading. 

The very first tidbit that caught my eye was the CDC’s yearly statement about flu deaths on their own website.  After reading it on several flu summary pages, that 80,000 stat seems to negate what the NYT and other media sources are repeating:

How many people died from flu during the 2017-2018 season?

While flu deaths in children are reported to CDC, flu deaths in adults are not nationally notifiable.

How many people die from flu each year? (2016 – 2017)

CDC does not count how many people die from flu each year. Unlike flu deaths in children, flu deaths in adults are not nationally reportable.

How many people died from flu during the 2015-2016 season?

CDC does not count how many people die from flu each year. 

How many people died from flu during the 2014-2015 season?

CDC does not count how many people die from flu each year. Unlike flu deaths in children, flu deaths in adults are not nationally reportable.

Ad nauseum to the 2006-2007 yearly flu summary page:

How many people died from flu during the 2006-07 season?

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Ma: One Syllable, Two Letters, A Thousand Grateful Tears

Mother-beautiful-word-lips-mankind-quote-on-storemypic-993dbBy Cathy Jameson

Ronan said my name the other day.  He was trying to get my attention, and boy, did he ever!  He wanted his iPad while we were in the car, but it needed to be charged.  As I sat at a red light, I saw Ronan in the rearview mirror signing for his iPad.  “iPad, iPad, IPAD!”  He really wanted it.  His facial expression and rapid signing let me know that.  Even though he was communicating his request well, I told him he couldn’t have it yet.  I reminded him that the iPad was charging and that he’d get it soon.  Further down the road when we stopped again, he took his attempt to the next level.  That’s when I heard Ronan.  Then I heard him again as he said, “Ma…”  I whipped my head around so fast and stared at my non-verbal 15-year old in the backseat. 

“Ronan!  Did you just say….mom?!” 

Looking me straight in the eye, Ronan stared at me and then muttered loudly, “Ma…,” and smiled back at me.  I never knew how beautiful a two-letter word could sound.   

Ronan doesn’t talk.  He lost his speech post-vaccination over a decade ago.  We get many vocalizations, but clear words are few and far between.  But one day last week, he spoke with purpose, with inflection, and with a smile.  He’s said ma (and mum-mum) before, but it’s been a very long time since I heard his sweet, and now deeper, voice asking specifically for me. 

When he does attempt to speak, we can hear vowels.  We can hear consonants.  We can hear inflection and emotions.  He’s in there.  We believe his voice is somewhere in there, too.  In all honesty though, whatever does come out of his mouth usually sounds like muttered jibberish.  That’s frustrating for us and very frustrating for him as well. 

Ronan never stops trying though.  Either with sign language or by typing his requests, Ronan tells us exactly what he wants.  Every now and then, like last week, we’ve been blessed to hear his voice.  Only one or two words at a time, we love to hear him speak. 

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Autism’s Emotions

Theatre_masks_mattlxBy Cathy Jameson

Fall down seven…get up eight…

Late Thursday evening, I took a few minutes to catch up on some autism and vaccine news I’d seen earlier in the week.  FYI:  A lot has happened over the last few days!  Two groundbreaking books debuted, one on the autism epidemic and the other about the HPV vaccine. Live interviews with several prominent advocates in the autism/vaccine community took to the airwaves, and jaw-dropping discoveries and demands were made by Robert F. Kennedy, Jr. and the Children’s Health Defense.  While I’m elated that more information is being shared worldwide about vaccines and autism, reading through last week’s news crushed me. 

Recently discovered evidence provided by Kennedy and Hazlehurst details obstruction of justice and appallingly consequential fraud by two DOJ lawyers who represented the Department of Health and Human Services (HHS) in 2007.  These actions led to a denial of justice and compensation for over 5,000 families who filed claims of vaccine injury leading to autism in their children.

It’s not the first time that that sort of news has left me reeling.  Our community’s learned other things too late before.  That happens when we find out that someone didn’t do their job or that something that was done years ago didn’t have to happen.  I’d love to hear that we’re only making progress but have sometimes been left feeling defeated instead... 

Like when an article published in the Pace Environmental Law Review revealed that the VICP has compensated “83 cases of acknowledged vaccine-induced brain damage that include autism”.   That’s only documented cases that made it through the system.  How many more are out there??

Like when Nancy Grace, a well-known lawyer, learned on air from Becky Estepp that families cannot sue vaccine manufacturers for vaccine injury or death.   How could she not know that??

Like at the end of a fear-mongering vaccine morning news segment when Dr. Nancy Snyderman arrogantly demanded everyone to “get your damn vaccine”.   Um, thanks but no thanks!

Like when one Congressman took the floor and begged his fellow members of Congress to do what they said they were going to do. Please! Listen to the people!!

Like when the Department of Human Health and Services didn’t do their job for the last 30 years. What else have they neglected to do??

Even with all the frustration those sorts of news stories bring, I admit that there is bit of a silver lining.  People are seeing this information go across their newsfeeds, they’re reading it and also talking about it.  That part is thrilling!  But in the same moment, my emotions will sometimes take a hit.  It’s just so heartbreaking to know that we have been let down.  I always hope that these stories won’t consume me, but how could they not?  The autism journey I’ve been on has had countless ups and downs.  I’ve gotten used to that, but I never expected the pitfalls I’ve encountered to have stemmed from organizations Risk Demands Choice Age of Autism Vaccine Mandatesand leaders I was told to trust. 

So many families have been misled by the experts.  Too many still are. 

Call me naïve, but it still hurts to know that people in high places have never, and will never, have my child’s best interest in mind.  It’s a shame that I had to learn that the hard way, but thank goodness I learned it when I did.  From that unfortunate experience, I learned how to be a better advocate not just for my son, who regressed post-vaccination, but for all of my children.  These kids of mine - they are my pride and joy!  God help anyone who tries to get between them and me.

By the weekend, I dug myself out of the doom and gloom that the news had put me in last week.  Brave souls are helping validate what so many of us know, and I want to shout to the rooftops.  How many times have heard or read that vaccines don’t cause autism when we parents know otherwise.  So often.  Too often!  It’s taken awhile, but lies made by our government and their representatives are being revealed.  Data that supports our children’s poor decline post-vaccination is being discovered.  All of that is being shared with the masses.  It may not be on the mainstream news yet, but these latest books, these live interviews, and RFK Jr’s discoveries are good.  The more he and his crew dig, the more we can teach future generations what to avoid.  If families can avoid the atrocities some of us were unable to, imagine the possibilities! 

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What's In Your Flu Shot?

EwBy 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

Fast forward to 2018, and that secret serum is changing.  This year, we’re being told that some flu shots are now preservative-free, egg-free, and even antibiotic-free.  FLUAD, and some other quadrivalent vaccines, wouldn’t be a great option for those with egg allergies.  Since the process includes use of embroynated hens’ eggs, it’s probably why I’ve seen more talk of egg-free options this year.  While reading up on that news, I continued down the vaccine rabbit hole to look at other flu vaccine package inserts.  Now, I’ve known that some vaccines contained animal proteins before, but the ick factor went up the more I read about what else is in them. 

I knew that bovine calf serum   has been used in other vaccines, but I did not recognize the MDCK cell protein that was listed in the Flucelvax flu shot.  So I did a quick search.  What I discovered was that it’s a cell protein from canine kidneys.  I had to do another search when I saw that the fall armyworm was listed on the Flublok package insert. An armyworm?  What is that, and what’s it doing in the flu shot?  The armyworm is related to moths, caterpillars and butterflies.  I love butterflies, but I certainly never imagined they or other insect cells would be part of the vaccine process.  One more ingredient made me pause – porcine gelatin.  Where have I heard porcine before?  I then remembered something about the Rotateq vaccine and how it had caused serious injury to pediatric patients a while ago.  That vaccine was contaminated from porcine DNA cirocoviruses, one of which can be lethal to pigs.  I was taken aback when I saw that the recently reinstated nasal flu shot, FluMist listed porcine gelatin.  Porcine circoviruses and porcine gelatin may be two different things, but what a potential gamble the industry is taking by offering this vaccine what that ingredient to the pediatric population again.

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This Year’s Flu Shot: Would I Ever?

Flu poemBy Cathy Jameson

I knew it was coming.  Even my kids knew.  The in-your-face and the can’t-avoid-it flu shot season has once again descended upon us.  Temperatures outside are still scorching, so those who typically associate the flu or the flu shot with the cold, winter months might be somewhat confused.  But not us.  As soon as we flipped to a new calendar page last week, there it all was.  Right in our faces.  The signs.  The advertisements.  The smiling pharmacists pushing their ever-failing wares on us.  It’s all back.  Did I miss it?  Not in the least.  I don’t think my kids did either. 

I thought we’d go another few weeks without talking about it here at home, but one of my children shared that some friends were already talking about flu shots, too. 

“I got mine today.”

“I’m getting mine soon.” 

“I’ll probably get one later.”

Not that they’re promoting getting a vaccine that contributed to their brother’s poor health, but my kids have quietly told me that when hear these sorts of conversations among their peers, they want to say, “You can have mine while you’re at it.  I’m NOT getting one.” 

Ronan’s younger sister has strong feelings about vaccines, especially the flu shot.  “Mom, I wished it had never been made.”  She was born after Ronan fell ill and has grown up watching him fall further and further behind her developmentally.  Post flu shot, and post other vaccinations received, she knows that things changed for him.  And not for the better. 

As frustrated as she and Ronan’s other siblings can get when they hear the ridiculous flu shot advertisements, I’m grateful that my kids are becoming braver in talking about them and about what happened to Ronan.  They’ve witnessed firsthand the long-term negative reactions that vaccines can cause.  They’ll be the first to tell you that they’re no picnic!  My daughter knows that she’s been blessed with better health, but she feels for her brother.  His health was compromised by something that was “going to protect him”.  The shots he received did nothing of the sort.  So it’s no surprise that Ronan’s little sister gets a little sad thinking about what could have been. 

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Best of: Color Blind or Color Conscious

Color_blind_test_wall_clockBest of! We all need a day off (Google it) from time to time!

By Cathy Jameson

While I was taking an introductory college course on the history of education, segregation and discrimination came up.  We spent several classes discussing those topics and what role they played in the school setting.  As the discussions intensified, the phrase “color blind vs. color conscious” entered the conversation.  Color conscious focused on a person’s skin color while color blind did not.  Toward the end of the semester, after many lengthy discussions and debates, including ones about how to treat and teach students in special education programs, one of our assignments was to answer the question, “What type of educator will you be, one who is color blind or color conscious?” 

I took the position that being “color blind” had more benefits than being “color conscious”.  Color blind allowed me to see my students as people first, then see their ability, disability or physical features second.  Being color conscious may be needed in some situations in the classroom, but overall, using that outlook exclusively could draw unnecessary or negative attention to an attribute that has no bearing on a person as a whole. 

I don’t remember what grade I received on that assignment, but for years, I’ve acted as “color blind” as possible.  I see that my children have as well… 

As Ronan’s abilities turned into disabilities, we were drawn to other families in similar situations.  The more time we spent together with these families, we went from seeking their advice to making play dates with them.  We eventually faded out the meet ups we’d been scheduling with typical families as we discovered more common ground with our new friends.  My typical kids never complained about not being able to play with the typical friends we used to see.  They were happy playing with everyone they met.  This included their new friends, many of whom had special needs. 

In the beginning, my kids would tread lightly at an initial get together with other special needs families.  It wasn’t because they were nervous about the child they’d encounter because we never mentioned that they had differences; they were nervous because the setting was unfamiliar.  Once they knew the rules of the house, and were told what they could and could not do, my kids jumped right in and played. 

The host family’s child, who usually had similar issues as Ronan, was invited to join their play.  While it was sometimes quite obvious that child had many delays, my children only saw the child.  On some occasions, my kids were successful in getting everyone to play together.  Other times they were not.  They never let on that they were disappointed when it didn’t work out.  They would try next time for everyone to be included. 

My kids didn’t think to differentiate between who was able and who was not in those attempts to involve everyone.  Many times they never realized that their friend had a diagnosis which could limit their involvement.  Friends were friends no matter their color, ability, disability or level of development.  Over time, my typical children have gained knowledge of why some children do things differently.  With that knowledge they’ve learned a valuable life lesson: to treat people with compassion no matter who they are and no matter what they can and cannot do. 

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Befriending Autism

Friends_0By Cathy Jameson

I’m more excited than my kids are about the start of a brand new school year.  Don’t get me wrong, spending the last few weeks with my children has been good.  Their long summer days, our late morning wake-ups, the outings we’ve gotten to do both in and out of town have kept our spirits high.  But it’s time we get back into a good routine again.  That routine will include school and some extracurricular activities like the kids’ sporting events.  Usually the highlight of my day, I love to go to their games.  Ronan isn’t always a big fan, but I try to get to as many events as he can handle. 

While he and I join the rest of the fans courtside or at the field, we’re usually approached by several friendly faces.  Mostly close friends who know our story intimately, we get to see a few other folks regularly while we’re out as well.  I’m grateful for when they nod or offer a polite hello as we walk by, but I can tell that they aren’t sure what to say or do when they see Ronan.  Not wanting to make them any more uncomfortable than they already seem, I thought of a few things they, and others in similar situations, might want to try when they see us next. 

Wave.  Ronan knows how to wave back.  Vomit meme

Say hi.  A quick, simple hello does wonders to my soul. 

Ask.  Ask how I’m doing.  Ask how Ronan is doing. 

Listen.  I’m a stay-at-home mom.  Some days, you may be the first adult I’ve gotten to talk to all day.  I miss adult interaction, so I apologize in advance if I get a little too Chatty Cathy with you. J

Be you.  We’ve obviously crossed paths for a reason.  Keep that connection going by telling me something happy or hopeful that’s happened to you. When you’re done catching up with me, talk to Ronan.  You know he can’t reply, but simply acknowledging what he’s doing is nice.  Tell him something like – You must really enjoy that game on your iPad, Ronan.  Look how well you’re doing!  Or note what he’s eating – What a fun snack you’ve got there!  Or pay him a compliment like you would any other kid – You’re doing a great job watching your sister play!  She must love seeing you here at her game. 

Those remarks will not be lost on Ronan.  He hears you.  He sees you.  He knows when people are being genuine and when they are not.  When you shower him with kindness, you shower all of us with kindness.  So, spread that love around!  I’m not saying you have to do it all the time, but one happy hello or one quick wave in his and my general direction really does go a long way.  Plus, if your children are close by and see you being positively in tune with us, they’ll pick up on what to do next time they run into us at other sporting events or at future school activities. 

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Weathering the Storm

Storm of love
By Cathy Jameson

This time of year while many families are getting ready for a new school year, I’ve been seeing lots of lists being shared.  They’ve included simple Back-to-School Supply lists, the very important How to Prepare for an IEP Meeting lists, and several tried and true Easy 30-minute Meals lists.  Since we’re still in hurricane season here on the east coast, I saw another one a few days ago that caught my eye.  It was an Are You Ready to Weather the Storm? list.  With how busy our week’s been, to include some medical issues that I hadn’t anticipated, that last list about weathering through the storm got me thinking.  You know what that means.  It means that I had to write about it!  

Weathering the storm.  Some days, what we are going through feels exactly like a storm.  We experience the calm.  Things are great.  But then, there’s a subtle change.  An odd behavior.  A breeze picks up.  There it is again.  Electricity’s in the air and the sound of rolling thunder can be heard off in the distance.  A meltdown…why?  Something is brewing and could hit close to home.  He was so happy earlier.  What happened?  We prepare ourselves for the inevitable–rain, wind, lightning, and more.  Crud.  A seizure.  Some storms are quick and leave hardly a trace beyond rain-soaked streets.  Other storms leave a path of destruction in its wake.  Kids, we need to tiptoe again today...  

Since we as a family are doing this life with autism thing together, I thought I’d ask my kids for some help with today’s post.  They tend to bring me exactly what I need after a full week like the one I had – they shower me with a dose of hope.  They do that by telling me things that I (and we) can do next time.  What do we want to do for next time?  Sometimes it’s something different, or something better, or something new that we haven’t tried yet.  So, this week, after getting some quiet time with Ronan’s little sister late on Friday night, Izzy and I chatted about how busy we’ve been and also how very focused we’ve needed to be.  Here are her thoughts.  

When the seizures come: First, we see what kind of seizure it is.  If we see that it’s a photic-driven seizure, like the Cj trainones Ronan’s had while we we’re driving, we try to cover his eyes as soon as we realize it’s the lights triggering them.  We help him stay calm, we do his countdown, and we keep track of how long seizure was.  Remember when we went through those tunnels on our vacation?  We knew he could have a seizure, so we made sure ahead of time to protect him.  We knew to pay attention for when we went back through the tunnel on our way home also.  For afterwards, when it’s over, we pray, we comfort, we help, and we hope that that seizure was the last one.  

When communication attempts fail:  When that happens, it might be that he’s hurt and he needs help but doesn’t know how to ask.  It could also be that something he doesn’t like is near him, but he can’t tell us to take it away or move it.  We look up the sign to try to figure out what he’s saying or we use environment to tell us what could be bugging him.  What might have scared him?  What did he hear or what is on him (clothing or shoes) that is irritating him?  Then we do our best to remember that he might not like to see or hear or touch that thing in the future so we keep it away from him.  

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Vaccine Choice - Respect the Answer

RespectBy Cathy Jameson

For years, Ronan’s siblings have been praying for a miracle.  On any given day, they share one of a few consistent requests during our family’s evening prayer time.  They ask God for Ronan to be able to speak again.  They mercifully beg for the seizures to stop.  They ask for his full healing.  I pray along with them, but sometimes it’s hard for me to “offer it up”.  The times it’s the hardest is after Ronan’s had a tough day or after he’s had seizures.  Those days, one of the sibs laments, “Mom, we’ve prayed a lot and for a long time.  Why haven’t our prayers been answered?”  I tell them what’s been told to me – sometimes a prayer is answered with a yes.  Sometimes the answer is no.  Other times, the answer is yes….but not right now. 

I was reminded of those three different answers when I stated one of them earlier this week.  It wasn’t about Ronan’s miracle his siblings are still waiting for; it was about a topic that has spurred the desire for that miracle – vaccines.  It was a short conversation with a nurse but one worth noting: 

Has he had a flu shot?
Nope.
You don't do those, right? 
Yep. 
Okay.

Easily, the nurse who was asking me that simple question could’ve taken it upon herself to lecture me.  She could’ve belittled me as others have attempted to do before.  She could’ve also loaded me up with industry propaganda about how “safe and effective” the flu shot is even though the HHS has neglected to study vaccines for the last 30 years as they had been charged to do. I’d have been more than ready to defend myself and my answer in why we “don’t do those” had she persisted, but I didn’t have to.  The nurse kept things simple and civil.  That’s because she, unlike other medical professionals we’ve encountered, respected the answer that I provided to her. 

I was so excited about how the conversation went that as soon as I could, I told Ronan’s siblings about it.  They were as grateful as I was.  In thinking about how that appointment could’ve played out, I was reminded of the three answers we may get when we ask for prayers:    

-Some people give a yes answer to any and all vaccines.  That’s their right. 

-Some offer a no, nope, or never to one or to all vaccines in reply.  That should be everyone’s right, but we know that some people in some states are no longer given that option. 

-Other people would like some time to mull things over and respond with not right now because there is so much to learn about disease, about the immune system, about vaccines, and about the law.  Taking time and delaying, or eventually forgoing, one or all vaccines being offered should be allowed.  But, again, some places have restricted vaccine choice. 

Yes.

No.

Not right now. 

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Summer Spontaneity

Summer of loveBy Cathy Jameson

We had the chance to go on a day-trip last week to meet friends at the beach.  It would be a lot of work to pull it off, but I reveled in the thought of being spontaneous.  I thrive by the ocean.  Ronan usually does, too, so when we got the opportunity to go to it again this summer, I rearranged what we could, cancelled what couldn’t be rearranged and then got the heck out of town for the day. 

We’ve dropped everything before, but that’s usually because something unfortunate has happened – a rash of seizures, an epic meltdown, a sensory overload.  The kids are used to hearing me make plans and then immediately break those plans, but they’ve never taken out their disappointment of missing out on something on their brother.  Even though it’s usually because of him that plans have changed, they understand that life with a sibling with autism doesn’t always go as they expect it to.  They get that, and they know that sometimes they have to just go with the flow.  I prayed that Ronan would get that this time – sometimes plans change.  I also prayed that our unexpected road trip would go smoothly. 

It did.  Until the siblings changed their minds. 

Right before we got to our destination, Ronan’s brother and sisters decided they’d rather go to a pool instead of the beach.  Going to the pool had been an option when we learned of the opportunity to get away, but I had my heart set on the ocean.  I wanted so badly to go there.  Ronan said he did also when I asked him if he wanted to go swimming at the beach like we got to earlier this summer.  He signed, “Yes swim water fish.” 

Ronan beach
Ronan sits seaside during the family’s vacation earlier in June.

The breeze, the sand, the waves – I wanted…no, needed it!  I wanted to see it, to feel it, and to be surrounded by that salty air again.  That’s what I told Ronan he would see and smell and feel, too.  The beach.  That’s what we talked about on the ride.  That’s what kept him focused and also what kept him distracted after I realized I’d left one of his movies and the iPad on the couch after we’d gotten on the road.  He’d done great so far to pass the time, but here we were close to where I told him we’d be going.  Do I turn right toward the beach that I’d described in detail, or do I reroute us and turn left toward the pool he hadn’t been to in years? 

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Vaccine Law and 2018 School Exemptions: A Guide for Concerned Parents

Knoweldge is power
As your body grows bigger Your mind must flower It's great to learn 'Cause knowledge is power It's Schoolhouse Rocky, the chip off the block Of your favorite schoolhouse, Schoolhouse Rock!

By Cathy Jameson

Back to school.  I love this time of year.  New supplies and new academic adventures await.  My kids are somewhat excited to return to school but more so for the social aspect.  They cannot wait to see their friends again.  Friends are a good thing to have in life.  I’m grateful for the ones I have, especially for the friends I’ve made online. 

I belong to a lot more parenting groups now than I did when my children were younger.  The people in these groups, many who have become personal friends, are a lifeline for me.  From the old timers to the youngins’, many of whom are more in tune with their parental rights than I ever was at their age, we have a safe place to talk, vent, and collaborate.  From poop talk to getting the skinny on who’s an autism friendly doctor or therapist, I’m drawn in to several conversations throughout the year.  Since the start of school is right around the corner, some of the latest convos have been about school shots. 

I’m seeing talk about shots in several groups that are medical- or vaccine-related and in typical parenting groups, too.  People are asking if it’s true that their child must be vaccinated.  I heard they don’t have to be but my district just sent me a notice. If I don’t get her the vaccine, she won’t get her schedule.  Most who’ve chimed in to answer know quite a bit about vaccine law and about their rights.  But, since not every member of the group is vaccine savvy yet, they’re gently reminding the newer folks that what some of the schools and health departments are saying about school shots is misleading.  Once that newbie parent is provided the accurate information, that yes, their child can still go to school without getting that Tdap vaccine or that booster, some of the parents band together to set the district straight.    

Guys!  XYZ district is saying that shots are required for school entry.  Shall we go school them?  
Triple photo
Photo credit:  Google Images

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Read All About It: Federal Vaccine Safety Reports Go Unreported

Theres-nothing-to-see-here-move-along-com-16250233By Cathy Jameson

Being mom to five is fun but can be tiring.  These kids of mine love to sign up for things – sports, clubs, afterschool activities.  I look forward to the summer months where I can take a break from their busy schedules.  This time of year, we scale back on things because we can.  That includes me, too.  I take time away from activities that I do during our family’s busier months, including some of the reading I do about vaccines, about autism, and about special needs parenting.  I need a break from some of that like the kids need a break from school. 

As much as I sometimes think I’ll remove myself from all things advocacy, I don’t think I could ever fully rest from it.  I’m constantly reminded of what vaccines did and also what they took away.  I’ve tried, but to walk away completely just isn’t an option.  Wouldn’t I rather just put my feet up and stop the madness for a minute or two.  Sure!  But if I stop, who’ll pick up where I left off?  Some of my friends and family will (thank you!), but how long will they last?  They know a lot about Ronan, but they won’t know everything there is to know until they step in my shoes 24/7/365. 

I pray I never have to ask anyone to be me each and every day for all of my kids.  But if I do, I’d want that someone to also pick up the advocating that moms like me do.  Would my family be able to do that?  Those closest to us most likely would.  Would my friends?  I think so, but I know not everyone shares the same thoughts and opinions as I do about certain topics.  That doesn’t stop us from being friend, but it has limited some topics of conversation in the past. 

I was thinking about how some topics are better left “off topic” when I saw Robert F. Kennedy, Jr. and Del Bigtree’s recent announcement.  If you’re part of the vaccine-autism community, you’ve probably already heard all about it.  For those who are not part of this community but who’d like a quick rundown of what that document states, hold onto your seats. 

What it comes down to is this:  Much of what you’ve been told about vaccines is a lie, and everything parents of vaccine-injured children have informed you of or reminded you about vaccines is true. 

From the ICAN (Informed Consent Action Network):

…since 1986, HHS has had the primary and virtually sole responsibility to make and assure improvements in the licensing, manufacturing, adverse reaction reporting, research, safety and efficacy testing of vaccines in order to reduce the risk of adverse vaccine reactions. In order to assure HHS meets its vaccine safety obligations, Congress required as part of the 1986 Act that the Secretary of HHS submit a biennial reports to Congress detailing the improvements in vaccine safety made by HHS in the preceding two years. “The result of the lawsuit is that HHS had to finally and shockingly admit that it never, not even once, submitted a single biennial report to Congress detailing the improvements in vaccine safety.”

Basically, your government does not have your best interest in mind when it comes to vaccines, and it hasn’t for a long time now. 

If this news shocks you like it shocked me, fear not!  Something can be done about it.  I was made aware of a call to action that anyone can submit through the Autism Action Network.   Send in a comment today, then share the link with 10 people.  It shouldn’t hurt to hear straight from the horse’s mouth, which is why I’m also encouraging friends who still believe and trust in their country’s vaccine program to ask for some clarification of this discovery.  Who knows?  When friends get a reply, maybe future conversations about vaccine safety will be a little bit different. 

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Autism Siblings: Taking it to the Next Level

Fiona and RonanBy Cathy Jameson

People warned me that the years go by quickly.  Boy, were they right!  Time really is flying by.  I’m reminded of that when Ronan’s big sister checks out a new college.  Fiona’s been checking out colleges for about a year now.  She hasn’t narrowed which course of study she’ll major in yet, but she’s definitely interested in careers in the science and/or medical fields.  With how much her brother has been immersed in all things medical, I’m not surprised that she’d want to pursue that sort of path.  I’m actually very excited about that, especially when I remembered one of my facebook statuses from several years ago.

Let it be known across the land: there is no crying at math today!!! Yay, Fiona for building that confidence.

At that time, Fiona, who always liked school, hit a road block.  She always excelled in Reading, Writing, History, and Science, but she was just not grasping Math concepts.  The more she tried and failed, that road block became a big, fat stop sign.  She wasn’t just not grasping the concepts, she didn’t care to do Math at all.  It was just too hard.  Half-way through middle school, though, she realized that by the time she got to high school, she’d be a year behind where many of her peers were.  She wanted to love Math like she loved other subjects, like Science, but there were more tears than high fives after each lesson.  When she began talking about going into the medical field as a pre-teen, I cautiously reminded Fiona that she might want to reconsider – Math and Science go together.  Did she realize that? 

She did. 

But that wasn’t going to stop her.  That girl, who’s always been one determined kiddo, finally got herself exactly where she wanted to be.  It took a while, but she was able to do that by requesting tutoring, by asking her teachers for help afterschool, and by asking us to enroll her in a self-paced year-long Algebra II class (which she successfully completed in 9 weeks’ time) to catch her up with her peers.  Where is Fiona now?  She’s prepping for and cannot wait to take an AP Calculus class this fall.  

What an accomplishment! 

Last week, while talking to a college admissions counselor, I asked Fiona what sort of questions she was asked.  Now finally able to say she’s “on track” for some pre-Med programs she’s been eyeing, she said she was able to share her goals, dreams, and future career interests with the college rep. 

She added, “Oh, and I talked about Ronan, too.” 

My heart swelled, “You did?  Tell me about it.” 

Fiona started, “Well, it began with me talking about my interests, like volleyball and photography, and then answering some typical interview questions: what are my short-term goals, what are my long-term goals, what are my academic achievements…  Those kinds of questions.”

“And how did Ronan come up?” I asked her.

“Remember you gave me some pointers before I went in, tell them I’m the oldest of five and that I have a brother with autism,” Fiona reminded me.

“Yeah, I’ve read that sharing that sort of information has been helpful for some other autism siblings who are a few years ahead of you,” I told her.

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Autism’s Tag, You’re It

Wandering graphicBy Cathy Jameson

Wandering is a heart-stopping, life-threatening dangerous reality for many families, mine included.  I haven’t written about wandering in quite a while.  That’s because it’s been a long time since Ronan has attempted to wander.  Until last week. 

Last week, even with precautions in place, Ronan tried and successfully made it half-way up the driveway by himself.  We’ve been vigilant for so long, but there he went out the door undetected.  What can a caregiver do?  

Suggestions we’ve been given include getting window wedges and door locks, investing in a tracking device, and creating a tag-you’re-it arrangement as one caregiver takes over for another.  At one time or another, we’ve benefited from all of those suggestions.  Last week, though, it was my turn to keep an eye on things.  Instead of double checking the door or tagging one of the kids like we’ve been doing for years now, I walked away without asking someone to help keep tabs on Ronan.  I didn’t think to do that because Fiona was outside and the reason the door had remained unlocked.  She’s right there.  She’ll see him, I thought, so I didn’t yell to her like I should have, and like I usually would do, “Hey, Daddy needs my help.  Keep an eye on your brother for me, okay?” 

Ronan’s sister was outside, but she was dropping something off to a neighbor.  When Ronan walked out, she didn’t see him.  She didn’t hear him.  No one heard him.  No one saw him.  It was a quick trip for Fiona, thankfully, and she was already walking back toward the house when she spied her brother.  Keeping upbeat, she gently redirected him back indoors with her.  He returned without incident and got settled back into an activity.  Once her heart rate went back to normal, Fiona chastised me.  I told her that she had ever right to. 

We’ve been practicing keeping the front door unlocked and opened since the weather got nice.  If we don’t teach Ronan how to walk past the wide-opened door that leads to the wide-opened world out there, we’ll all live in fear.  Living in fear is unhealthy.  So, it’s been baby steps – one day the front door stayed open just enough to let a sliver of light in.  The next week, we opened it a bit more.  We did this for weeks opening the door little by little until it was fully ajar.  Over time, we did this not just for a few minutes a day but all day long.  Having a locking glass/screen door at that entrance helped create this teaching opportunity.  But the side door, the door that Ronan recently slipped through, has no screen door.  Once it’s opened, it’s Hello, real world! 

Even though that side door has bells on it, if no one hears them Ronan can easily step out and wander away.  He could easily have done that while we were on vacation last week as well. 

While away on vacation, we had to beef up our “security” efforts.  We were staying in a new place.  I’d been there once before and had an idea of the layout of the house, but it was unfamiliar to Ronan.  He was naturally curious about everything – the TV, the bedroom, the refrigerator – including the front door which was his exit out of there. 

Continue reading "Autism’s Tag, You’re It" »


Rise, and Shine!

Greetings-from-california-postcard-newport-rhode-island-post-cards
By Cathy Jameson

We got to sneak away last week.  We'd planned to do some day trips already and were going to stay somewhat local for a few days, but a friend's generosity opened up an opportunity for us to go home for a week.  Going home, even if only for a short while, is always a blessing. So when we got that chance, we rerouted ourselves and headed north instead.

Newport bridge
                                                                                                 Photo by Fiona

While packing our bags and making sure all of Ronan's things were ready - meds, extra clothes and water-proof bedding items, his favorite book and picture, I recalled previous trips back to my favorite City by the Sea.  Like last year and years before, I envisioned we'd enjoy the sun, the beaches, the food, the parks, and the company we'd get to keep. Happily, we got to do all of that! But we also faced some new challenges while traveling and while we were in town.  The hardest one was when Ronan, who had done a remarkable job while we were out one evening, signed that he was all done and that he wanted to go home.

Home.  Home. Home.

It took some convincing for Ronan to get out of the car that night and to come into the house where we were staying, but I felt a twinge of sadness come over me when I saw that Ronan had reached his limit.  To me, this was home. Years ago, it’s where I lived, worked, made friends, and met and married my husband. I’ve made so many memories here, and it's where we hope to come back to someday, too. In my mind, even though lots of time has passed, this place still is home.  But for Ronan, coming back is hard. It's a huge change in scenery, routine, and comfort zone.

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Speak Your Mind

Speak your mindBy Cathy Jameson

Several years ago, Ronan’s brother stepped on a nail.  It wasn’t a rusty nail, but it did pierce his skin.  While playing in the back yard, he and a neighbor crossed an old wooden board that spanned over a trench that separated our yard from an undeveloped lot of land.  As he crossed the board, the nail, which was sticking straight up, went right though Willem’s shoe.  While quite painful, he made his way across the yard and into the house with no assistance.  Even so, I knew to be careful when removing his shoe and sock so as not to further disturb the wound.  Once his foot was exposed, I immediately inspected where the nail punctured his skin and observed.  Blood began to ooze out which I took as a good sign.  At no time did I panic or think I needed to run him to the E.R.  That would’ve be fruitless anyway. 

Knowing the typical protocol for that kind of injury, if my son had been exposed to tetanus, E.R. staff wouldn’t proceed with giving the TiG (tetanus immunoglobulin) first or maybe even at all.  They would’ve offered to clean the wound, which I could do myself, and would give him a tetanus shot, which he didn’t need (and which, as far as I’m aware, is never a stand-alone shot—it’s adminstered as the Td, DTaP, or Tdap).  Regardless, the kids were vaccinated on schedule.  That meant that Willem had gone through the tetanus series and wasn’t “due” for one.  At the time, vaccine logic told me that if he had been exposed and if that vaccine series did what doctors claim it does, which is to provide protection from the tetanus bacteria, he’d be fine.  He’d had several of those shots already.  I was reminded of that fact earlier this week. 

At a clinic with Willem for a physical, the nurse, who looked to be in her late 30s-early 40s, could not wrap her head around the fact that a stretch of time had passed since those vaccinations had been administered.  Getting ready to put the cuff on Willem’s arm to get a blood pressure reading, the nurse kept going back to one of the pages I’d filled out before we arrived.  She’d look at the page, glance at me quizzically, and then look back at the page again.  She finally spoke up. 

“Are you sure you have the right date?” 

Looking her straight in the eye, I confidently replied, “Yes.”

Skipping to the next section, she paused.  Then she went back to that other page. 

Oh, boy.  Here we go, I thought. 

Willem must have thought the same thing.  He looked at me knowing things could go one of two ways – our way, or her way.  He smiled a very nervous smile at me.  I quietly whispered, “I’ve got this,” and smiled back at him.

Turning her head toward me, the nurse looked at me strangely again, “But it says here…” 

Before she could finish, I politely interrupted her and said, “Yes, that date is correct.”  Then, I attempted to get her back on track.

“So, he’s here for a sports physical.  He’s a pretty active kid.  Eats well, loves to play outside… rides his bike, enjoys football, frisbee, and soccer…he’s doing well in school, has a great appetite, and he’s grown.”

Unsatisfied with my response, I quickly added, “There’s been no change in his health since his last physical.”  There.  That should get her attention back to where it should be. 

She was not having it. 

In her broken English, she stammered, “But this date, it’s….”

While there is one question about one vaccine on this particular form, vaccines are not a requirement for why we were at the clinic that day.  The nurse, who over time must see thousands of patients requesting this exam, should know that.  But I ended up being the one to educate her.  Just like I had to several years ago with another young medical professional who grew up outside of the United States.  Relying on third-world facts and fear tactics, he, too, tried to change my mind about vaccines.  After a lengthy convo, he respectfully came around.  But this gal didn’t seem to want to budge.  She’d need a longer lesson on knowing when to stop badgering a parent who obviously knew more about vaccines and parents’ rights than she did. 

Forced to speak my mind once again, I firmly said, “We’re here for the physical, so…thanks for asking about the tetanus, but he’s all set.”  

She’d been quite pleasant when we’d walked in, but the nurse’s tone had clearly changed.  Not entirely pleased with how pointed I had become, she jotted something down on the intake paper.  She’d written down Willem’s height and weight on it already and was about to write down his blood pressure and heart rate, too.  I didn’t see what she scribbled, but I’m sure it wasn’t a positive comment.  That didn’t phase me.  It wouldn’t be the first time someone’s attitude about me changed once they got to know the real me. 

Still in disagreement, the nurse finished her part of the appointment and left the room.  Leaving quieter than when she walked in, I stuck to my guns and waited patiently for the doctor to come in.  With gusto, and all smiles not just toward my kids but toward me as well, he welcomed us with open arms.  And within 10 minutes, we got what we came in for and left without incident.   

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Best of: Required Summer Reading

Mom-reading-newspaperHappy Summer 2018. Here's a best of from Cathy.

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. 

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Dads Who Go Beyond

Super dadBy  Cathy Jameson

I saw one of the sweetest videos a little over a week ago.  You may have seen it, too.  A dad jumped on stage to help his young ballerina daughter.  Plagued with stage fright, she was in a tough spot.  Dad realized that and came to save the day.  Holding a baby in his arms, he not only leaped to his daughter’s rescue, he leapt with the other ballerinas during their recital performance, too.  It truly was one of the sweetest moments I’ve seen go viral.  

Other dads are pretty awesome, too, including DaveIzzyand a lot of the dads who contribute to conversations here on Age of Autism.  Knee-deep in the thick of things, I can feel the love they have for their child through their responses and shared stories.  But some of the dads here won’t get the sort of international attention like that wonderful Ballerina Dad got.  

Even without the accolades, the dads here step up.  They do whatever it takes.  They worked tirelessly – and will continue to do so – to keep their child happy, healthy, and safe.  So, this Father’s Day weekend, I thought I’d tip my hat to some of the guys I’ve been inspired by here in the autism community and those beyond in other special needs circles.

Like this dad

As well as this determined dad: 

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Autism's Works of Mercy Part 2

 

By Cathy Jameson

Last week, I shared how Ronan’s youngest sister made the realization that she lives and performs many of the Corporal Works of Mercy  right here in our home.  Usually, those works of mercy are done outside the home, but after reading through an old coloring book that highlighted those simple acts of kindness, she saw a constant theme – do small things with great love.  On a daily basis, she’s doing lots of things with tons of love for that brother of hers!  Some of what she’s doing comes naturally and would be expected of any sibling, but with how disabled Ronan is, she goes a step further.  She continuously and selflessly pitches in.  

Ronan

After reading through that section of the coloring book, I could reflect on what we’d read only for a few minutes.  Thinking Ronan might be done listening, I had put the book down.  Ronan wasn’t done though.  He was glued to the review lesson and completely lost interest in watching the movie he’d just requested.  So we kept turning pages. We kept reading.  We kept talking about our faith.  We kept sharing what it means to perform other works of mercy, the Spiritual Works of Mercy.  It was utterly amazing.  

One per page, we reviewed the 7 Spiritual Works of Mercy.  We read about what it meant to Admonish the Sinner, to Instruct the Ignorant, to Counsel the Doubtful as well as how to Comfort the Sorrowful.  Then, we read about how to Bear Wrongs Patiently and why we need to Forgive All Injuries.  Finally, we went over the importance of Praying for the Living and the Dead.  My daughter was beginning to get distracted, but those other 7 works of mercy hit me hard.  It had been a while since I’d really studied them, and with Ronan sitting next to me, I couldn’t help but think about why we do the things we do—it’s because of what happened to him. 

Admonish the Sinner –We do this when we speak out about someone who has done something wrong.  I’ve done that more than a time or two right here on AofA!  I’ve done that publicly by calling out politicians, the medical establishment, and the pharmaceutical industry.   I do that privately when I have conversations with new parents about our family’s experience.  Plenty of parents have joined me in keeping those conversations going.  Until children are no longer harmed in the name of Science or sacrificed for the greater good, we need to keep those important convos going. 

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Autism’s Works of Mercy – Part 1

PenmanshipBy Cathy Jameson

I was sitting on the couch with Ronan a few nights ago when he signed a request.  He wanted to watch a movie.  I told him yes, but before I turned the television on, I brought over some of my old school supplies.  Since it was late in the day, I knew that Ronan’s attention span wouldn’t be too long.  Regardless, we needed to do some reviewing of skills I’ve been working on with him.  That meant a quick peek at the world map, practicing some cursive letter writing, reading through some math flash cards, and catching up on some reading comprehension.  For reading, I picked out an old coloring book I’d used as a resource back when I taught at a small Catholic School.  Even though almost 2 decades has passed since I first stepped foot into a classroom, much of the material I’ve saved from those early teaching days is still relevant.  That includes this particular coloring book. 

The book covers basic Catholic doctrine for young children.  Included are the 7 Corporal Works of Mercy.  Simply put, these are small acts of love that we can do for others.  We perform those acts of love when we: Feed the Hungry, Give Drink to the Thirsty, Clothe the Naked, Visit the Imprisoned, Shelter the Homeless, Visit the Sick, and Bury the Dead.  As Ronan and I went over what these acts of kindness meant, Ronan’s youngest sister joined us in listing ways people help each other.  While we talked, she realized that we don’t have to go too far to perform these acts.  We do a lot of them for Ronan automatically. 

Feed the Hungry

I remember having to switch out practically our entire pantry and refrigerator after learning that gluten and casein could do a number on kids like Ronan.  I wasn’t thrilled thinking about not being able to use all that food—regular bread, crackers, waffles, oatmeal.  All the cheese, cow’s milk, and yogurt.  With each item tossed, I was utterly overwhelmed wondering what on earth I was going to feed a kid who loved to eat wheat and dairy.  Staples my siblings and I grew up with - pizza, peanut butter and jelly sandwiches, and milk - were now off limits.  While learning how to eliminate the foods that caused severe inflammation, I slowly replaced our family’s menu with safer, greener food options.  At one point, we all switched to gluten-free.  Soon after, like Ronan had to, we eased off the dairy.  We did that for a few reasons, but the neatest one was so that we could eat in solidarity with Ronan.  My typical kids can now have more “regular” foods than Ronan probably ever will, but they make sure to never taunt him about it.  When they get special treats, like when a friend brought them Krispy Kreme donuts last weekend, they made sure he got something fun and yummy, but safe for his tummy, too. 

Give Drink to the Thirsty

Removing milk was one of the most traumatic acts for both me and my children.  In those early days when I knew far less than I do now, I had no idea that dairy could cause major bowel issues.  The more I learned, the more I made a connection that Ronan was severely affected by dairy products, including milk.  (His siblings were affected, too, but to a lesser degree.)  I found replacements, as I know many other parents have had to, but getting Ronan to drink something other than milk took some time.  Once he did, though, his bowel issues weren’t as explosive.  Brain fog had lifted, too.  Now, when Ronan’s thirsty, he signs for juice.  The juice is watered down quite a bit to the point of it being more water than juice, but what’s even more exciting is that after some regression, he can use a regular cup like his siblings do.  He hasn’t mastered that skill completely yet, but he has come so far and with the encouragement from his brother and sisters.

Clothe the Naked

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Best of Cathy Jameson: Home Away

Cat Beach
Note: Memorial Day weekend kicks off the start of summer here in America. Here's a best of from Cathy, who has a well deserved weekend "off." 

By Cathy Jameson

We started talking about taking a summer family vacation several months ago.  With as many needs as one of my children has, with my husband’s job demands being as intense as they are, and with autism reality sneaking in and breaking all of our best laid plans, it’s a good thing that we took that long to plan our getaway.  

Our plans changed two weeks before we were to leave.  They changed again one week before we were to leave.  They changed as we hit the road last weekend, too.  We normally don’t tell our typical kids that we’re leaving on grand adventures until right before we go, but I’m glad that we gave them a heads up this time.  If there’s one thing that autism has taught me and Ronan’s siblings, it’s that we have to be flexible.  If we were going to make this vacation work, we’d all have to be flexible - Ronan included.  

Ronan likes his routine.  He likes to know where his favorite books, blankies, and Wii discs are.  He also likes to know where Daddy is also.  If something’s out of place, he may get a little out of sorts.  That could include taking longer to finish a task.  It could mean he refuses to comply with a simple request.  If something is really bothering him, it could bring on some negative behavior.  Things were going fairly well for Ronan on the first day of our vacation.  They were going okay on the second day was well.  But on the third day, the day we had to drop my husband off at the airport to attend to some business that couldn’t wait until this week, that day threw Ronan over the edge.  That night, after a long day of signing Daddy Daddy Daddy Daddy Daddy, Ronan refused to go to sleep.  That’s not entirely unusual.  Ronan will have sleepless night at home, but he was hundreds of miles from the comfort of home, his routine, and now Daddy, too.  Things were getting a little more stressful for Ronan.  There were getting a lot more stressful for me.  If we were going to survive the next 3 days before my husband returned, I knew that I needed to make a change.  That would include changing my attitude.  

We were staying at a friend’s house and sharing a bedroom with the siblings.  If Ronan didn’t sleep, it was likely that the rest of us wouldn’t sleep either.  I’m usually a “cup is half-full” kind of person, but being this far from home with an irate, non-verbal child who stayed wide awake until 3am was turning me into a gloomy Gus.  Add being jarred awake at 4am after Ronan fell out of the bed he and I were sharing, and I was pretty much done with our family vacation.  Add in some odd seizure activity the next day, and I was visualizing myself hauling back down the highway heading for home.  As easily as it was to call it quits right then and there, I’m glad that I didn’t.  

As he usually does at home, Ronan bounced back.  

The next day, Ronan was not ready to explore town like the rest of us were, so the friend whom we were staying with offered to watch Ronan for me.  It’s been a year since she’s seen us, so I was hesitant to leave Ronan with her.  But my friends, especially the ones who’ve become more like family to me, are very quick to tell me, Go. You need a break.  I’m here and can handle whatever needs to be handled.  Ronan will be fine.  I’ll be fine, now go.  

So I did.  

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Study Time

Study timeBy Cathy Jameson

In our ever-growing world where the science can never be settled, we need passionate and dedicated scientists.  Scientists are known to spend a great deal of time studying and learning from the natural world around us.  Their discoveries are based on their observations and experimentation and then presented for others to see.  Data is important, but one thing I sometimes see being forgotten in the field is recognition of the actual human being who has contributed to scientific findings and statistics.  I was reminded of that after catching up on reading a few studies last week.  One in particular, which was about using social media to help parents understand and improve their attitudes about vaccines, brought me right back to the time when I began to question vaccines, my doctor, and Science. 

Before I had kids, and even after having them, I would never have said that I had an attitude about vaccines.  Back then, I honestly never thought too long about them.  I just knew I wanted them without any sort of hesitation.  But, after observing my son fall ill post-vaccination, I started having doubts.  As I began to question them, I realized that I didn’t have enough information beyond what the doctor was telling me.  Since she only offered positive vaccine thoughts and a very strong opinion supporting them, I set out to find the facts I wanted and needed.  Like parents today who also have questions, I had to learn how to look for unbiased information.  I had to learn how to discern what I heard from other people.  Putting emotions aside, I had to learn how to weigh what I was being told by the pediatrician and also factor in what my gut was telling me.  She said that they were necessary and would help my children be healthier.  But after seeing reactions while also learning that they were not required for school entry, I really wasn’t sure what I was being told about vaccines was completely true.  As she kept pushing them despite the problems Ronan was having, I became one of those parents who was “on the fence” about vaccines.  I needed more help.  But from where? 

I needed rock-solid Science.  Surely, that could help me. 

As a child, I never liked Science.  I didn’t hate it, I just didn’t appreciate it.  The sicker Ronan became, though, I was drawn toward it.  Spending countless hours at the library (think pre-internet days) and finding myself spending the most time searching for and reading books from the Science section, I was forced to learn more about topics I should’ve paid better attention to when I was in school.  Being the parent of a chronically-ill child, I’ve had to rely on Science as well as people in the medical community in order to support my son and his intense needs.  In the long run Science did help.  So did keeping my son, and what he was dealing with, forefront in my mind. 

In retrospect, that should’ve been proof enough.  But my naiveté kept me from seeing reality.  Plus, others, like our doctor, refused to see the human in front of them, too.  Eventually, I knew that I couldn’t discount what was happening right in front of me.  And when I discovered that other people elsewhere were reporting similar issues with their kids, I knew that I was onto something. 

I hadn’t yet found those other people but soon would. 

In those early days when I had gotten as far as library searches could take me, I began to use the internet.  Unsure of how to navigate it like I can today, I wasn’t always confident in what to look for.  Thankfully, I kept at it and explored all that I could.  What a treasure trove of information!  Even so, I wasn’t prepared for the rabbit hole I was about to walk into after a family member told me to check out something called a discussion board.  Tip toeing into one, I was overwhelmed, but I was also glad to discover that other people were asking the very same questions about vaccines that I also was.  Thank God for those early Yahoo! Group days. 

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More Than a Mom

Happy mother's dayBy Cathy Jameson

We got rid of cable a few years ago.  Disappointed with rising fees and discouraged that my children were picking up bad habits from characters on the kids’ shows they were watching, it was one of the best parenting decisions we made.  Initially, I missed some of the channels and programs I’d gotten into the habit of watching.  Over time, though, we as a family created new habits and screened better what we wanted to watch.  With how quickly one can stream current shows and movies, I am glad that can still watch TV.  We control better now what comes into our home.  That said, I’ve been known to binge watch a show that some think absolutely ridiculous: Grey’s Anatomy

Now, I know that it’s not the best show out there, but at night, after the kids are tucked in, and before my husband and I catch up on a documentary or a previously-aired cable show that we missed, I sit there and watch some mindless (to me) television.  Purely for entertainment purposes, Grey’s Anatomy is total TV drama.  Until one day, it wasn’t. 

In a flash back scene in season 6, Dr. Ellis Grey was insulted by a male co-worker.  Telling her that she didn’t need to go in the operating room with him and that he could handle it because she “had her daughter to think about,” she rebuked him.  “I gave birth to a child, Richard.  That makes me a mother.  It doesn’t make me inept.  It doesn’t make me less of a woman.  It doesn’t make me less of a surgeon.  No matter how much everyone else wants it to.” 

I clapped. 

I may have quietly shouted out “Yeah!” after that scene also. 

While I know that it was just a scene on a popular TV drama that has little to no morals, I couldn’t help but think of how many times that I, too, have been dismissed like Grey was because I was a woman.  It’s happened while talking to administrators and others who had the power to help us but didn’t.  It’s happened while talking to medical staff about my son.  Not only that, I’ve been insulted for asking direct medical questions because I’m not a formally trained medical person.  Worse, I’ve been told that I can’t know what I’m talking about because I’m just a mom.  I can deal with misogyny.  I can and do fully admit that I am not a nurse or a doctor.  But to disregard the most important role I have as a mother is the lowest of the low.  It happens.  It happens to me, to other moms, and more times than it should.

Before I was a mom, I had a professional career.  Once I had my degree and license, I put my heart and soul into teaching.  An elementary school teacher, I was told many times that I was a good teacher.  I loved my job.  Only when I started to have my own children did I think I’d ever take a break from it.  Grateful for the chance to stay home to raise my children, I enjoyed the short break from planning, grading, and creating curriculum.  Always with the thought of returning to the classroom though, while home I kept up with what was going on in the education world as well as with maintaining my credentials.  But when Ronan got sick, I knew heading back into the classroom wasn’t going to be as easy.  Even so, I continued to plan for it.  I never intended to have to walk away from the workforce completely as I eventually had to.  Ronan’s needs were just too great.  Some days, I miss having a career that I loved – being out of the house, teaching, contributing to society, making money, but my calling now is that of being a mom.  Some don’t care to recognize the value or intensity of motherhood, but there really is no other job like it. 

The role of a lifetime, being a mom is fulfilling.  In the early, tiring days, I didn’t always think that, but now that I’ve being doing this motherhood thing for 16+ years, I do.  My kids seek me out first.  They tell me things first.  They share personal things with me first.  They want a hug from me first.  Ronan can’t share all of his thoughts or feelings like his siblings do, but that doesn’t stop him for seeking me out as well.  With his signs, or after typing a request, he tells me,

Mom help movie please yes. 

Mom more eggs meat cereal yes. 

Mom no no thank you. 

While cryptic at times, his messages are always purposeful.  He wants me, my help, and my immediate attention.  I burst with pride when he does that, but at the same time, I lose myself in being his Mom. 

Most days, I feel that I’m more Special Needs Mom than Cathy.  I’m more Special Needs Mom than Wife sometimes, too.  Putting all of my energy – both good and bad – into mothering Ronan, I forget to take care of me.  I forget to divide my time with his siblings.  I end up forgetting to share things with my husband, too.  Finding a balance – wife/mother and also wife/special needs mother – and keeping that balance takes work.  What can I do to create that?  If I forget to pour my cup first, I know that I’ll run out of steam.  If I slow down too much, though, I may lose the motivation I need to put one foot in front of the other.  Not every day is the same and not every situation with Ronan plays out the same way, so I find myself having to try, try again whatever it is I’m hoping to get done.  

The other day, after an exhausting day that included being outside in the heat longer than usual, a young woman we’ve grown fond of saw me.  It was at the end of one of Ronan’s little sister’s sports events where Ronan had immediately lost interest in being there as soon as we arrived.  At the end of the game, with Ronan in tow and in awe of how I do the things I do, she said, "Mrs. Jameson, I don't know how you do it.  Teach me your ways."  I could’ve gone on and on about how this wasn’t what I signed up for, that this isn’t what I thought motherhood would be like, that I hope she’d think twice before vaccinating when she has kids, but I took a different approach.  Instead of bemoaning or highlighting how very hard life was for me and Ronan for the last few hours, I replied, "It takes a lot of peace, a little bit of patience, some coffee in the morning, sometimes some chocolate in the afternoon....and every now and then, a splash of vodka in the evening." 

Smiling at her, we both then laughed and laughed.  We found humor in what had been a tough situation.  All joking aside, I was at a breaking point when she saw me earlier that afternoon.  Glancing at us during the game, I know she recognized that it wasn’t easy for Izzy’s brother to be there.  Because of that, she knew that it wouldn’t be a cakewalk for me either.  Ronan wanted to go home.  But it was Izzy’s turn to shine, and I wanted to be there for her.  Putting her needs ahead of Ronan’s and mine, because easily I could’ve made an excuse and taken him home, I encouraged Ronan to make the most of it.  Eventually, he did.  He settled for some snacks and a game on brother’s iphone.  In doing that, I got to see Izzy play and others got to see that I could finally enjoy the rest of the game. 

That young woman at the game saw and appreciated a side of me that some of Ronan’s professionals do not.  She understood that I had to juggle much more than I expected to.  She saw that I did that only with love, too.  I don’t get that same response other places, especially from some medical providers.  But as long as those who chose to support my family know and respect that I am more than a mother to my kids, that’s what matters.  In supporting us they get to witness me, my children, and my husband doing more than we ever expected, imagined, or thought we’d have to.  We could pitch wild fits about it and complain all day long about it, but we don’t.  How could we?  Ronan’s autism certainly is not a gift, but he, and all that we’ve learned from him, is and always will be. 

I may not be an educator in a classroom anymore, but I find that I am still teaching others.  It isn’t science, social studies, or mathematics like I used to teacher.  It’s unexpected lesson in life like that young woman witnessed last week.  To those who care, to those who listen, to those who respect us, thank you.  Thank you for helping me be more than a mom to my little family.   

Cathy Jameson is a Contributing Editor for Age of Autism. 


Would You Rather

Field tripBy Cathy Jameson

My daughter’s middle school class had a field trip recently.  At first, when I heard about the trip I didn’t think anything of it.  My job was to sign the permission slip, send in money, and hope to remember to pack Izzy a bag lunch the day of.  But in telling me everything they were hoping to do on that field trip, Izzy was so excited to go and asked if there was any chance I could take her.  I really didn’t think I could but I didn’t hesitate to tell her, “Let me see what I can work out.” 

It took some brainstorming, but I was eventually able to tell Izzy that I’d not just be able to bring her to the museum, I’d be happy stay with her, too.  “You’re gonna drive me and stay?!” she squealed.  Yep, I was.  Before she got too excited, I quickly let her know that I didn’t think I’d want to drive anyone else, just her.  That’s because Ronan and his part-time caregiver were going to have to come with us.  It wasn’t my first choice, but if I was to go, so would they have to go as well. 

The night before the trip, I was asked if I had room in the car to bring 2 more students to the museum.  I did.  But did I want the responsibility of driving them?  The field trip permission slip form is now multiple pages long.  In signing them, we parents release the school and the administration from any sort of liability.  We also sign off on allowing medical staff to attend to and treat our child should there any medical emergencies arise.  Initially, after reading those forms, I told Izzy that if she wanted to stay home instead of go with her class, I’d be okay with that.  We could do something fun together, a mommy date…just us.  But she really, really, really wanted to go, so I made sure I could.  But I had only planned to driving her up and back.  Could I add more people to the mix?  Yes, I could, but did I want to?  Thinking about those forms and my responsibilities as a driver made me shudder.  I’d have to think about it. 

When the field trip was first announced, I hadn’t even entertained the thought of going with Izzy let alone offering to drive her friends and also the young teacher who requested to join us.  Originally, I had nothing else planned for me that day and easily could’ve surrounded myself in silence.  When things get very busy for our family, as they have been lately, I crave silence.  I desperately needed it, but there’d be none if I opted to go on this trip.  My desire to be with Izzy that day was greater than my need for alone time.  So was my desire to help others.  So, on Tuesday morning last week, with a car full of silly middle schoolers, we took off. 

Continue reading "Would You Rather" »


Autism’s 1 in 59: From Breaking News to Heartbreak

Breaking newsBy Cathy Jameson

My day started early Thursday morning.  Up and out the door and on the go from before 7am to almost 2pm, I finally had time to sit down mid-afternoon.  After reheating some leftovers for a late lunch, I opened the usual websites - my email, AofA, and Facebook.  Within minutes of sitting down, I started getting emails.  Have you seen the new numbers??  New numbers?  The autism numbers!  Oh, that's right.  Usually published in early April, I, like many other parents, had been waiting for them to be shared.  Go look, but be prepared.  It’s not good.  Scared to find out, I jumped over to a few news sites.  There they were.  Considered breaking news, the new autism rate had been announced that morning: 1 in 59.

Cj 4 28 1

Image:  Twitter

The ‘new’ numbers aren’t so new though.  Based on data from years ago, and from only a handful children in only a handful of states, a more accurate rate is likely much higher. 

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Image:  Talk About Curing Autism

Those numbers – they really don’t add up.  I know that.  Other parents like me know that.  But the general public doesn’t.  Unless they go looking for the information themselves, they won’t know how tragic it was for me to hear that newly published rate.  Too tired and sad to do anything fruitful, I looked for other stories to read.  Closing the news websites down, I kept the internet open for a few more minutes.  Having less than an hour before I had to leave the house again, I made sure to read stories that were completely unrelated to autism. 

Continue reading "Autism’s 1 in 59: From Breaking News to Heartbreak" »


Cat’s 2018 Autism Action Month Playlist

Music MotivatesBy Cathy Jameson

Music is as much a part of me as writing is.  I love to write, and I love to listen to music.  Both have brought me comfort.  Both have gotten me through tough times.  Every few months, I like to add a song at the end of one of my Sunday posts here.  The song has been picked because it usually compliments my thoughts.  But sometimes, it’s the lyrics of a song that has actually triggered the writing.  In the past, I’ve included songs from all sorts of artists.  From hard rock and alt rock to everything in between, I’m always happy to share a tune that’s inspired me. 

A few years ago when April turned blue, I started sharing what I was specifically listening to during that month which many of us would rather skip over.  I turned off the news and turned up the volume of the music I was listening to.  Not wanting to celebrate or embrace any part of autism or what causes it those 30 days, I drowned myself in music so as not to get caught up on the blue washing going on around me.  Some songs I listened to were happy songs that made me dance.  Other songs came with water works.  With even more awareness going on this year than tangible action that some families desperately need, a new playlist is needed.  In no particular order, here are the songs I’m listening to now. 

Enjoy! 

Danger Zone – I had to laugh when I heard this the other day.  This song!  Oh golly, it’s cheesy, but how many of us willingly enter “the danger zone” of debating vaccines online when we log into our social media accounts?  So many of us!  I don’t purposely log in looking to take a troll down, but I will politely chime in when I see misinformation being shared.  I will especially share my two cents when I have time and energy if the other side starts pontificating propaganda or disrespecting a parent’s decision.  Mind you, I know I don’t have to say anything, but some days I do choose to engage.  Knowing I may not change anyone’s mind, I tiptoe into the danger zone very carefully. 

https://www.youtube.com/watch?v=yK0P1Bk8Cx4

Get the Mercury Out – This song popped up on my newsfeed a week ago.  I couldn’t have asked for a more perfect song!  I’d shared it on Facebook quite a few times several years ago and always got good feedback.  The best comments came from the moms who were on the fence about vaccines.  Knowing they “should probably look them up” but were unsure of where to start their research, posting this song offered the opportunity to drop some resources, websites, and truth bombs in a private message later.  The beat’s good, the message is great.  Go ahead, and give it a listen.  I think you’ll like it.  (P.S. I know it’s not just mercury that’s gotta go…I’d be okay if other ingredients were also taken out…or if entire vaccine program did a disappearing act, too.)   

https://www.youtube.com/watch?v=mXDVOG-EHgI

Everybody Knows – So what does everybody know?  Everybody knows that vaccines are safe and that autism cannot be caused by vaccines.  Duh.  But, wait!  Some of us disagree with that.  Everybody should know that vaccines, like all pharmaceutical products, come with risks and that they don’t always work.  But they don’t.  Not everybody knows yet which is why some of us choose to speak up.  We must!  Until everybody knows the whole truth, we will keep talking, sharing, blogging, speaking, and writing about vaccines and autism and the link between them.    

https://www.youtube.com/watch?v=RaJAxdGeZ4E

Lose Yourself – Being the parent of a special needs child can be all sorts of things.  It can be rewarding.  It can be thrilling.  It can also be frightening.  One day can be filled with one emotion, and the next with an entirely different one.  Depending on the situation, we may see multiple emotions and all at once!  It can be incredibly overwhelming to be the Mom or the Dad, especially if you have other children.  Moms, Dads, be good to you.  It is so hard to do sometimes, I know, but make sure you are taking care of you, too.  When the good days are good, life is awesome.  Focus on that because bad days can quickly bring us down a deep, dark hole.  Just promise me that wherever you are on this journey, don’t lose yourself in the process.  (*little bit language in this Eminem song…but that signing the young woman does – wow.  Check out all that ASL!)

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

This Is Me – I heard this song for the first time last week.  Minus the beard, I couldn’t help think, this is me!  This is many of my friends, too.  When it comes to defending our beliefs, we are no stranger to insults.  Sharp words cut us down, but we are brave, strong and absolutely unapologetic for who we are.  We believe something that society wishes we didn’t:  that our kids were harmed.  Guess what?  They were!  Some of our kids are still hurting.  We march to a new beat because of what happened to them and to us.  It’s not a life we ever thought we’d live.  It’s not a fight we thought we’d have to fight.  But that fight, that resolve, that intense drive to help our children has turned us into who we are.  Who are we?  Brave, unapologetic, and strong.  This is me!! 

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

Continue reading "Cat’s 2018 Autism Action Month Playlist" »


Speaking in Pictures

by Cathy Jameson

I’m tired. I’m frustrated. I’m done with the media. Some days, I want to walk away. I think other parents feel the same. I can speak for other parents out there who feel the same way. They’re tired. They’re frustrated. They’re done with the media. They may want to walk away, too. But, the public is still being told to embrace and celebrate autism while also being told to ignore what parents of children with autism, like us, are saying.

For some of us, vaccines had something to do with our child’s autism diagnosis. Instead of listening to us for advice, the public is told to tune us out. Some do. And that’s their right. It’s a shame, though, especially this month with all the blue-washing that’s going on.

Sdds
Photo credit: Karen Fuller

With as much information people have access to compared to when a lot of us parents started out, you’d think fewer children would be falling onto the spectrum. The exact opposite is happening. The more we’ve been ignored, the higher that autism rate rises. The higher other childhood disorders rise as well. What can we old timers do? Share more? Talk more? Write more? We’ve covered every single topic out there already!

I’ve already repeated myself a ton of times in writing, but I’m not ready to call it quits on this advocacy thing. So this week, I thought that I’d speak to other parents in pictures.

Curious?

Keep scrolling.

Unless otherwise stated, all images were from a google, twitter, or facebook photo search. Some photos show where they originated. Others do not. If we’ve shared one of yours and you want proper credit, please let us know.

I can’t say this enough, but young mamas and papas, please…

A

That’s because…

Z

Forced vaccines right here in the good ol’ US of A? Yep. That’s happening.

If you don’t know your rights, or if you’re okay with the CDC’s schedule, take note of the possible path you/your child could be walking when you stick to that vaccine schedule:

X

And how many vaccines is your little bundle ‘due’ to receive? Here’s a quick comparison using 2016 https://www.learntherisk.org/ stats:

Ss

What if it was you, the adult, who was being told you needed all those shots? Ever think about that?

Cc

It’s worth thinking about and asking about. I know it can be intimidating to ask questions, especially after…

F

It can be awkward, but it’s okay to know more. It’s also okay to to look up the information on your own. Your health and your child’s health is worth it. Even if you sound like a crazy person when you share what you’ve learned.

W

Honestly, I’d rather be crazy than ill informed, especially when it comes to knowing what to do for my child.

Speaking of being informed, here’s one way to do it. Read the vaccine package inserts, not just the 1 pager that your doctor or nurse tells you to read:

Dw

That’s because…

Y

The CDC even states that…

R

Too many parents learned that the hard way and later realized that …

   Ee

Which is why we want to be excited for you when you make announcements that a new baby is on the way, but this is how some of us feel instead:

Wy

Really.

We want to be excited, but new mamas are being told to ignore their instincts, to trust corporations, to put their faith in man-made products and to listen to paid pharma spokesmen instead. Don’t believe me? Check out what your AAP is saying about one of the most natural acts ever:

Uy

Breastfeeding isn’t natural? Um, yeah it is.

But there’s no money in that, so groups like the AAP, the CDC, and the FDA are constantly trying to remind us that…

Fear

It’s mind blowing what we’re told to believe. Focus should be back on the individual. In this case, the child…

Jh

You decide what goes in and on your child’s body. You get to pick what he eats, what she drinks, what hair care and hygiene products he needs, and which vaccines she will get.

That last product, which comes with no money-back guarantee, deserves as much research time as your baby’s crib, car seat and which type of paint you’re going to put in the nursery. Should you opt for vaccines, just remember that…

Kj

Nor can you sue the government should that decision go wrong…

Kj

And for those who poo poo parents’ decisions to opt out of vaccines or who want to blame disease on the unvaccinated, please remember that…

Youcant

Instead of questioning me, I have a question for you…

Whywould

Some of us come at vaccines at a different angle. Those of us whose child suffered greatly post vaccination were with the pro-vaccine crowd at one time. Lots of pro-vaxxers tend to forget that. At one point, we were with you 100%. But when our child was left with a host of medical problems, to include autism, our lives were flipped upside down and we were forced to rethink everything we were taught, told, and believed. That’s shaped me into the person I am today.

Who am I?

Well, besides being just an old, tired mom speaking in pictures this week…

Iamnot

Cathy Jameson is a Contributing Editor for Age of Autism.


A Series of Unfortunate (Autism) Events

A-series-of-unfortunate-events-teaserBy Cathy Jameson

I haven’t gotten much done while the kids have been home on Easter break this week.  Always hoping I’d be able to catch up or finish at least one project while we’re home and not running all over town, other things have kept all of us busy.  With the end of the week approaching, I hadn’t yet had a chance to brainstorm anything for today’s Sunday post.  So, while we sat at the orthodontist’s office late Thursday afternoon, I asked the kids for some help.  

What’s inspired you? 

What’s been floating through your minds this week? 

What do you think people want to read about this weekend?

Ronan’s younger brother said, “Oh, you can tell everyone that we’re watching all the new A Series of Unfortunate Events shows.  Remember how you made us wait until after Good Friday to watch the new season?” 

Smiling, I said, “I do remember that, and I’m glad you took time on Good Friday to be quiet and reflective instead of watching TV all day.”  Lemony

Willem continued, “Yeah, but then, we binged the entire second season Saturday and Sunday!”

Smiling again, I laughed and said, “You did.  You’ve also devoured reading and rereading almost every single one of the books again this week, too!  But you know what, as much as you like it, some of the readers here may not know about the show or the books it’s based on.”

Thinking, Willem responded, “Well, we could tell them about some unfortunate autism events that we and Ronan have gone through.  How about that?” 

“My darling, I think you’re onto something,” I proudly stated.

“Plus,” one of the other kids chimed in, “It’ll help people know that we need than just more awareness this month.  Awareness is not going to make autism any better in our house.  It just isn’t.”

I nodded and said, “Right you are.”

“So, what unfortunate events do you remember, ones that made you frustrated?  Lots of people know that you kids are super kind and caring, but that’s because I love to highlight those moments.  I’ve shared that things can be really hard for me as a mom, but I don’t always include how hard it can be on you guys.”

Lowering his head, Willem quietly said, “You could tell them about the time that Ronan came to breakfast naked.” 

“You mean like he did this morning?” I asked. 

Giggling, I said, “The first time was kind of funny.  That’s because he hadn’t yet hit puberty.  But the latest time, like this morning when he was just wearing socks and his headphones.  Yeah, it wasn’t so funny.” 

“Mom, it was totally embarrassing.”

“I know, honey.  I was actually embarrassed, too,” I admitted.

Continue reading "A Series of Unfortunate (Autism) Events" »


Autism At The Foot of the Cross

Easter angelBy Cathy Jameson

I know that our readers come from many different backgrounds – both religiously and politically, but today, today is a day that Christians around the world celebrate new life, new hope, and a new beginning.  It’s Easter, and I’d like to take time today to reflect on why it’s a special time of year for my family. 

My kids are still young enough to want Easter egg hunts.  After Mass, my youngest is planning on spending the entire day in an old bunny costume she’s worn for Halloween.  But first, before the candy and the toys, we celebrate the holiness that comes with this feast day.  In order to do that, the kids start to quiet down.  They actually started to do that a few days ago.  Reflecting each day on what Jesus was doing this week thousands of years ago, they imagined Him in the upper room on Thursday evening and in the garden on Thursday night.  They imagined Him carrying the cross Friday morning.  Then, they remembered Jesus being nailed to the cross at noon on Friday.  From noon – 3pm on Friday, they watched The Passion.  I didn’t direct the kids to do any of this, so it was quite impressive that they encouraged each other to be so quiet, thoughtful, and reflective! 

Watching them prep like they did, and hearing them talking about the crucifixion, got me thinking about an expression:  Bring it to the foot of the cross.  You may have heard that before.  Christians will sometimes say it to a friend during times of trouble.  Confiding that something is wrong, they’re told to take the problem to the foot of the cross:  Don’t go it alone, friend.  Bring it to God.  He’ll help.  I have been telling myself more and more to remember to take my troubles, my worries, and my fears to the foot of the cross.  

CJ easter 1

The older Ronan gets, the more worries I have.  I shouldn’t worry as much as I do because, most of the time, problems we’ve had have worked themselves out.  But on the days where I find that I can’t see beyond what’s right in front of me, I become overwhelmed and will mentally fall in a heap.  When that happens, that’s where you’ll find me calling out for help.   

Like when Ronan’s pricey medication was no longer covered under his insurance plan:  Lord, this is so hard! 

Like when Ronan started having grand mal seizures:  God, what is happening?

Like when I’m just so tired and have no energy left for anyone:  Jesus, please help me. 

Pausing, reflecting, asking for help – it’s not an uncommon practice for anyone to do that.  In fact, it’s one thing that all people can do no matter what their religious background is. 

Last week, after a few tough weeks that had finally turned around for the better, I started to think about times when we, Ronan’s family, could be at the foot of the cross.  Was it when I had to tie Ronan’s shoe for the millionth time?

CJ 2 easter

Or when brother was asked to read the same lines from one of Ronan’s books out loud all afternoon?

Continue reading "Autism At The Foot of the Cross" »


Spring Cleaning Special Needs Files

Retro wife cleans dad in backgroundBy Cathy Jameson

The kids had a snow day last week.  While they usually do better with a routine, I will always welcome an alarm-clock free day in the middle of the week.  With no need for any of us to leave the house, I wondered what I could do with the oodles of hours I had in front of me.  I could catch up on bills and emails.  I could make a double batch of gluten-free pancakes for Ronan.  Or I could clean out my closet.  Since it had been a while since I went through my closet, I decided to start some spring cleaning there.  Tossing aside clothing I didn't care for or fit it into anymore, by lunchtime I had a nice stash of giveaways to bring to the thrift shop.  I had half the day still ahead of me, so I decided to deep clean my closet.  That meant pulling out some storage bins I'd stashed in a dark corner under some dresses.  On the floor, hidden behind some full-length gowns I have, the bins were filled with old IEP notes, copies of old medical records, and countless years’ worth of old EOBs.  Only I knew about those papers, and for years, I let them bother me.  

I know I should've chucked much of what was in those storage bins a long time ago, but for several reasons I’d saved every single piece of paper in them.  I knew I had a big job ahead of me, so I lugged everything to the dining room to start to go through it.  Some documents were originals while others were copies.  The earliest reports went back to 2001 and to my first pregnancy.  All my life, I couldn’t wait to be a mom.  When I saw my old medical record, I was whisked back to happy memories.  With that ‘textbook’ pregnancy and a healthy baby resulting, I was as equally excited when we learned that child number 2 was on the way.  As I continued to go through each file folder, I was fast-forwarded in time.  Files related to Ronan were now at my fingertips.  My emotions changed. 

In that next stack, I came across handwritten notes mixed in with therapy reports from Ronan’s preschool days.  I found food diaries I'd kept when Ronan was being seen at a feeding clinic.  I found emails I’d printed out from other moms.  Some were encouraging, Cat, you can do this!  Others were littered with terms I’d yet to fully comprehend – Look up the Omnibus, vaccine injury tables, and mitochondrial disease.  Reading through some of those pages was hard.  I knew so little back then.  What I did know at the time, that my once healthy child now needed intensive care, didn’t make any sense. CJ vax docs

Some days, it still doesn’t make sense.

The more Ronan-related papers I found, the slower I started to sort.  Therapy suggestions, educational goals, medical emergencies, and outdated treatments plans brought me back.  They brought me back to a very dark place, but I continued.  One page at a time.  One painful memory at a time.  I read everything.  It was not easy, but if I was going to get this spring cleaning job done right, I needed to go through each page I’d saved.  After reading each page, I then needed to decide something:  keep it, recycle it, or toss it. 

Even though some of the paperwork brought back memories that are now part of an unfortunate reality, I decided to save several forms and statements.  My save pile was small, but later, something in it would become quite significant.  If I decided not to save the paper, I recycled what didn’t have any identifying information on it and created a pile of things to be shredded. 

Another hour.  Another file.  Another stack to read.  As the day wore on, I was happy to see my shred pile growing.  Toward the end of the day, I pulled out a file that was filled strictly with medical papers.  That file contained pharmacy print outs and medical encounter reports.  I’d stapled the reports to the accompanying Explanation of Benefits (EOB) from our old insurance company.  Save, recycle, toss.  Save, recycle, toss.  I’d gotten into a groove, but I then cringed.  I saw the term "Preventative" on one of Ronan’s EOBs.  Next to it was a dollar amount.  $102.42.  If I could get a refund on those vaccines, I would. 

Continue reading "Spring Cleaning Special Needs Files" »


Speak Truth, a Follow up to When the Siblings Speak

 

Sschool House Rock billBy Cathy Jameson

Groups rights in this case would be too great of a risk.

That was the feedback that my daughter’s proposed bill received. After Fiona submitted the mock bill, which aimed to secure a student’s right to an education as well as guarantee the right to employment, she wasn't terribly shocked at the response.  Some adults have yet to realize how important it is to protect their personal health care rights.  To ask a bunch of teenagers to fully understand and vote on a topic she’s spent years supporting was a pretty steep task.

Maybe these other students haven't experienced what Fiona has when it comes to vaccines.  We're both very grateful for that, but the other teens’ skewed thought - that the greater good is more important than the rights of an actual individual - does no one any good.  I asked Fiona about the mock bill process and what she thinks she would’ve done differently if she ever had a similar assignment for her government class.  Here was our conversation:

After you turned in your bill, what came next?  

My classmates’ bills were randomly assigned to another high school government class in the US.  That other class read through each bill and participated in a mock committee debate.  The bills submitted could either be passed, amended, or rejected.  If a bill was rejected, like mine was, you couldn’t make any changes.  It basically died in committee.

Did any of your classmates' bills make any progress?  If so, which ones? 

Yes.  Many of the ones that went farther than mine were about environmental issues, alternatives for energy, and gun control. 

How long did it take for your bill to get shot down?  

It was about a week and half after I submitted it.  That doesn’t mean they debated for that long.  That would’ve been nice if they did because that would make me think that they were really into debating this issue.  It’s an important issue, and these other students are going to have to consider vaccines in the future, not just for themselves but if they ever have kids, too.

Did you expect it to be rejected by the committee?  

Continue reading "Speak Truth, a Follow up to When the Siblings Speak" »


Coordinated Care

What+is+Diastat+Diastat+is+a+gel+form+of+Diazepam
By Cathy Jameson

A new care coordinator was assigned to Ronan a few weeks ago.  Wanting to meet us so she could explain her role and how her company can assist families like ours, I really wasn’t looking forward to meeting her.  She’s straight out of mainstream medicine, an area of medicine that doesn’t usually go out of their way for moms like me.  Moms like me question, doubt, fear, and don’t appreciate everything being offered.  What they say is preventative really isn’t.  What mainstream med says is safe and effective really hasn’t been.  What they say is mandatory really shouldn’t be.  Feeling apprehensive, but knowing that this meet up was an inevitability because of the type of program Ronan was in, I made plans for us to get together on Monday of last week.  

During the meeting, I believe that I gave her enough information to satisfy her questions.  Ronan has this diagnosis and that diagnosis.  He uses this equipment and is on that prescription.  We see this doctor, that doctor and those therapists over there.  He requires this amount of assistance and that amount of support.  Getting more personal, I was able to share that oh, yes, he is well taken care of and well loved.  He enjoys watching movies, playing Wii, and oh...no, he did not get this year’s flu shot or that pneumonia vaccine...but thanks for asking!  

Waiting for the next round of questions, I watched the young nurse fill out Ronan’s forms.  Checking this box, crossing out that wording, circling this option and x-ing out that answer, she remained silent.  I did, too.  She didn’t get to know everything.  Part of being the kind of mom mainstream medicine tends to loathe,  I’ve learned when to speak.  I’ve also learned when to shut up and just listen.  I don’t always like to do that, but it’s part of what moms like me have had to do.    

An hour had passed.  The last part of the meeting with the care coordinator was talking about and making goals.  Goals?  Medical goals?  In all the years Ronan’s been seen, evaluated, and treated, no medical person has ever asked me about making medical goals for Ronan.  Even so, I blurted out two as quickly as she’d asked:   

#1 To make the seizures stop

#2 To restore Ronan’s speech

Without making a comment, or showing any emotion, she wrote down what I had said.  Then, I waited.  I waited for some advice.  

But, I got none in reply.  

Continue reading "Coordinated Care" »


Autism’s Caregivers

Family StoryBy the Jameson Children

We heard about a doctor who recently made some hurtful comments.  He insulted parents who are “anti-vaccine”.  He said that those parents hate their kids. What an absurd and unprofessional thing to say!  Sadly, we think that doctor really, really believes that moms and dads, like our mom and dad, hate their kid. 

If mom hated being Ronan’s mom, she wouldn’t spend all of her time with him.  But she does.

If mom hated Ronan, she wouldn’t spend thousands of dollars on his therapy.  But she does.

If dad hated Ronan like that doctor says dad does, he wouldn’t take Ronan out on Daddy dates to his favorite restaurant.  But he does. 

If dad hated being Ronan’s dad, he wouldn’t get up in the middle of the night to help Ronan get back to sleep.  But he does. 

If dad hated Ronan, he wouldn’t work hard every single day, and also work two jobs, to make sure Ronan gets the care he needs now and in the future.  But he does.  CJ palyground 1

Our parents do not hate our brother.  They love him very much!  You can see that love in everything they do for him.  You can feel that when you watch them helping him.  They help him all of the time, I mean, Allllll of the time.  Parents who hate their kids don’t give them healthy, organic foods.  They won’t make sure their kids get their medicine.  Our parents do all of that even though they’re tired, and it costs a lot. 

That doctor made a false claim and he did it in public in front of other people.  Not only that, someone offered to print his rude words.  Now more people can know what he said.  That could be a good thing, we guess, because then more people will see that he’s not exactly a kind, caring doctor.  We know a few kinds of doctors, and you know what, they like that our parents work as hard as they do!  Some of the nurses say that Ronan is their favorite patient.  They also say to mom, “Mom, you know him best.  Tell us how we can help you.”  That’s pretty awesome.  That’s how doctors and nurses are supposed to be, nice and caring.  We’d never want Ronan to be under that other doctor’s care. 

Since he’s in a position of some kind of authority, some of the people may think that other doctor is important and will probably believe him.  If he could just see what we see.  Our mom and dad want only the best and will do whatever they can for Ronan.  Ronan can’t talk or take care of himself completely yet, but mom and dad make sure he’s okay.  They make sure he’s happy.  They protect him also.  They’ll protect him from doctors like that one who wasn’t nice to moms and dads.

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Best of: Break My Stride

StrideNote: Cathy has the weekend off. She wrote this post this time of year in 2014. 

By Cathy Jameson

All I wanted to do on Thursday was vacuum.  At 10pm, as I made my way to bed, I glanced over at the vacuum and shook my head.  There is was.  Sitting in the same spot.  Untouched.  All day.  I hung my head and thought, Geez. Why can’t I get anything done around here?  Trudging the rest of the way to my bedroom, I added ‘VACUUM THE HOUSE’ to my list of things to do Friday. 

When I write my To Do lists, they tend to be a mile long.  I give myself an entire week to accomplish the tasks though.  Returning phone calls, scheduling appointments, sorting through paperwork and getting to the housework can’t be done in one day around here anyway.  With Ronan’s school and therapy schedule, and with juggling my other kids’ schedules, I’m on the go and out of the house more often than not.  Giving myself the entire week to check things off the list is more doable.  I can plan better and can usually get everything done.  This week, knowing we’d be hunkered down all day Thursday because of a winter storm, I looked forward to being home all day and to crossing things off my list.  That included vacuuming. 

But it didn’t happen.  And I was hard on myself for not getting it done. 

Dust bunnies and crumb bits under the table reminded me that my floors were screaming to be cleaned.  I was upset at myself for letting something so trivial bring me down.  But it was the one thing I wanted to do.  Instead of being able to look at the day as a success and remembering what I had gotten done, I only saw what I didn’t do. 

Midway through beating myself up about not getting this chore done, I stopped and laughed.  I had made a phone call earlier in the day (which was on my list of things to do) to my parents.  The topic:  me focusing on and worrying about what Ronan can’t do; not on what he can. 

More often than not, when I see what Ronan isn’t doing, I stumble and fall landing in a heap of tears as I go down.  That happened around the same time I could have been vacuuming on Thursday but didn’t.  It happened when I distracted myself choosing to read a story about a boy who’d recovered from autism.  It happened when I also beat myself up for not being able to provide Ronan with what this other family can provide:  an independent future. 

Continue reading "Best of: Break My Stride" »


When the Siblings Speak

Sister and brotherBy Cathy Jameson

Ronan’s siblings tolerate quite a bit from their brother, but they rarely ever complain about it.  They could – the noise he makes when he gets overly excited is ear piercing, the attention he needs is constant, and the frequent rearranging of their schedule because of his needs gets tiring.  It can be heartbreaking for them.  It can be heartbreaking for me as well. 

Being able to live through what they have had to has made Ronan’s siblings stronger though.  It’s made them more sympathetic.  It’s made them more aware of issues other kids their ages are years away from being introduced to.  Knowing what they know and witnessing what they’ve witnessed has made them more vocal, too.  Ronan’s big sister has taken her sibling viewpoint to the classroom a few times already.  She did so again last week.

Fiona was assigned to write a bill for one of her classes.  She told me she could’ve picked from any number of topics but immediately knew which one she’d write about:  vaccines.  More specifically, she wanted to focus on vaccine choice.  I had no doubts that she’d put 100% effort into her work, but I asked her, “Are you sure?  Are you sure you want to go there?”  Other teachers know that Fiona’s younger brother’s health drastically declined post vaccination and have been very understanding.  I wasn’t sure if this teacher would also be.  I shouldn’t have worried.  My girl took the challenge and ran with it.  Before I could ask her again if she wanted to reconsider, she confidently replied, “Mom!  Don’t worry.  I’ve already got a lot done, and it’s not even due for a few weeks.” 

For the next few weeks, Fiona collected quite a bit of information.  Some of it was added directly to the bill while other data was entered on a worksheet and saved as a reference.  Because the topic of her bill is a topic we discuss regularly here at Age of Autism, I asked Fiona if I could share some of the information in today’s post.  Enthusiastically, she said yes. 

Topic:  Health and Safety

Purpose: To ensure that all students (preK-Post Baccalaureate) in any public, private, and/or charter schools, and all employees in the private and government sectors are guaranteed their right to an education and employment without regard to their vaccine status.

Benefits: the guarantee of educational rights and employment security

Effective:  immediately and indefinitely

Knowing that the bill she was asked to write could raise some eyebrows, Fiona offered comments.  She didn’t need to do that, but she found a section where she could include supportive information.  She wasn’t adding it wasn’t just to supply useful facts and figures but to educate others, especially those who have yet to experience negative side effects of vaccines like she has: 

This bill gives the people the opportunity to attend school and work without jeopardizing their personal or medical rights.  It does not take anything away.  It does the opposite - it protects citizens' rights and opportunities. 

Continue reading "When the Siblings Speak" »


All His Life

Then and nowBy Cathy Jameson

I don’t usually take him with me, but Ronan accompanied me to my doctor’s appointment last week.  Since he had been to this facility previously, I wasn’t worried that he’d have any problems going again.  The only struggle he’s had when he’s gone with me to my appointments is when I’ve had a blood draw.  When the tourniquet is tightened around my arm, the panicked look on Ronan’s face speaks volumes.  Not surprisingly, needles do a number on him.  His immediate physical response to bat the phlebotomist away from me isn’t necessary, but in his eyes, he’s protecting me.  I’m glad that he has that instinct.  Since I wouldn’t be having any blood draws at this appointment, I knew Ronan would be fine to join me.  Happily, he was. 

Since it was not the first time Ronan had gone with me to this clinic, the doctor knew a little bit about my son already.  He’d commented on the noise-cancelling headphones and asked about the signs he was using after meeting Ronan.  I gave a short answer, “He has regressive autism and is non-verbal.”  It wasn’t a complete answer, but it would do. 

Because he’d taken notice of how different Ronan was compared to my other children, when we went over my family medical history later I made sure to say that, to my knowledge, no other relative shares the same combination of medical conditions that plague Ronan.  That information made the doctor’s eyes widen a bit.  I was glad to see that response.  Sometimes that look is accompanied with a long pause which gives me enough time to add, ‘Yep, we saw him decline post-vaccination.  The vaccines ended up doing more harm than good.’  But this guy returned his focus back to me quicker than others have and continued with the next question on the intake form.  After all, it was my turn to be the patient, not Ronan’s. 

That initial meet up was months ago.  Months ago, I walked away deep in thought when I left the doctor’s office.  I did so again last week.  As with other appointments, both Ronan’s and my own, I had lots to think about.  This time though, I couldn’t shake something that the doctor had said.  What he’d said wasn’t about me or my health; it was about Ronan. 

The appointment that brought me back to his office last week was for a follow up.  A quick review of my previous tests and labs showed that things were looking good for me.  With nothing new to discuss except how to continue to keep myself healthy and out of the doctor’s office, the physician asked what changes I’d made.  I had taken a page from what had worked for Ronan and changed in my diet.  I told him that and getting better rest have done wonders for me these last few months.  Learning to say no to things – like the volunteering I’d been trying to squeeze in – gave me more time to rest and to eat better, and gave me energy to concentrate better on important, time-sensitive tasks that kept popping up.  Being as thorough as he could, which I appreciated, the doctor then went back and reviewed the symptoms that had brought me to him and made sure they were no longer a concern. 

While looking back through my chart to jog his memory, he asked me if I ever pinpointed when things started to bother me. 

Had you been in an accident?  No.

Had you changed anything in your living environment?  No.

Had you been under any stress?  I laughed. 

Continue reading "All His Life" »


Challenging Autism

Autism eye testBy Cathy Jameson

Last week, Ronan had an eye appointment at rather large medical facility.  We were going to a place where multiple specialties work under one roof.  That can be a blessing – providers have access to the main medical file and can look over other doctors’ notes to review current treatment plans and progress.  If any sort of collaboration needs to be done, communication to another specialist can happen quickly.  But, being in a large facility can have its drawbacks – instead of just a few patients, there are lots more patients, nurses, doctors, and medical stuff coming and going.  With that, there’s more sensory stimulation, waiting room time, and sometimes, an increase in frustration.  Just walking into a facility like the one we were going to could be a challenge for Ronan.  Knowing the types of tests he’d be asked to do that day would be also, so I did as much as I could ahead of time hoping things would run smoothly. 

Being unfamiliar with the location we were going, the first step, literally the one Ronan would take out of the car, could be hardest.  Happily, Ronan got out and then waltzed right into the building!  Curious about where we were and about everything he was seeing, Ronan took his time walking down the very long corridors to the clinic.  He pointed to words he recognized while we were in the elevator and also signed the ones he knew the sign to.  As we walked, he smiled and began to scroll through some of his favorite signs.  He does that to tell us he’s happy.  I smiled back at Ronan. 

Rounding the corner, my expression changed.  As I expected it would be, the waiting room was packed.  Oh, boy.  This could be a long day, I thought.  I was glad that I’d brought all sorts of Ronan-happy things (snacks, his favorite books, and an iPhone to watch favorite videos).  They would help keep Ronan distracted while we waited for his name to be called. 

While sitting and waiting after we’d been checked in, I began to feel apprehensive about the new provider assigned to Ronan’s case.  I’d learned that the doctor we were seeing was not the specialist I’d agreed to take Ronan to.  This doctor only knew Ronan on paper.  In order to get a better picture of what’s going on and why we were there, I’d need to offer a full history.  I began to mentally go over everything I wanted to say and ask him the new doc. 

With as many medical issues that Ronan has, I wanted to give as much relevant information as possible and prayed that what I said, and how I said it, would be respected.  My thoughts were interrupted after just a few minutes.

“Jameson.  Ronan?” a very young doctor called out. 

Making eye contact with him, I raised my hand and turned to Ronan.  “Hey, buddy.  That’s us.”

“Follow me, please,” the doctor said.

Since the doctor we’d been assigned was young, likely inexperienced with a child like mine, and would only be able to do so much before having to refer us to the head doctor, I walked into exam room 10 steps ahead of Ronan and quietly stated, “He’s non-verbal and has sensory issues.  Speak to him.  Tell him exactly what you’re going to do and why, and that should help.” 

Without replying to me, he turned to Ronan and said, “Hey, big guy!  Can you sit right here?” Ronan responded immediately and positively and got settled in the chair.   

Taking out some files I’d brought, I said, “Ronan signs.  It’s not straight up America Sign Language.  It’s more RSL…Ronan Sign Language, but if you need me to interpret anything, let me know.”  The doctor nodded his head, said he understood, and said, “You do what works.” 

Other people might have dismissed my attempt to help, but I felt myself begin to relax.  Still skeptical since he’d yet to begin the physical part of the exam, I watched the doctor for his next move. 

Continue reading "Challenging Autism" »


Overheard

Hand ropeBy Cathy Jameson

There I was minding my own business while waiting to check out at the grocery store last week.  Not wanting to engage with anyone or deal with anything besides what was on my To Do list, I tried to ignore everything around me.  That worked until I glanced behind me and saw that several employees from various departments of the store had gathered in the same spot.  One of the women, an older gal, smiled brightly as a fellow employee approached the group.  The employee, in her early 30s and not in uniform, joined the women’s conversation.  She’d brought her toddler in with her. Everyone beamed. 

After greeting each other, all eyes and smiles were directed to the child.  Snuggled into his mama, I couldn’t see him too well.  Giving them their privacy, I turned around and took more items out of my cart.  As the conveyor belt moved my food closer to the cashier, I reached back into the cart for more items.  Stealing a glance at the ladies, I heard them chit chatting about the store, other co-workers and the weather.  Before long, the conversation turned, and the ladies’ expressions changed.  I didn’t hear what the young mama had just said, but I could hear the older lady’s voice quite clearly as she reached for and rubbed the little boy’s knee. 

“Oh, poor thing!  You got your shots today.” 

As their smiles turned into frowns, chills went up my spine.

Looking away from the doting older woman, I could finally see the boy’s face.  His eyes were a tad puffy, and his nose needed to be wiped.  Staring back at his mom, I noted that he was able to make eye contact.  

‘Good,’ I thought, ‘….for now,’ I added. 

I shuddered then focused back on what I was doing.  Unloading the last few things from my cart, I shook my head.  Still curious, I glanced one more time at the child.  The ladies were smiling again trying to make him laugh.  One in particular, that older one, kept the conversation going. 

“How old is he now?”

“Two,” the mom replied, “It’s his birthday.”

“Oh, it’s today!  Happy birthday!” the older gal squealed. 

 ‘You mean Happy Shot Day!’ I said to myself.

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Best of: I Have Come to Realize

Sun burn handNote: Cathy is enjoying a weekend with her beautiful family.  We ran this post in May of 2013.

By Cathy Jameson

A few years ago, a friend tagged me in a note on Facebook called “I Have Come to Realize”.  Every sentence began “I have come to realize that...” and included about thirty random ideas.  My friend had filled in her realizations and asked that I copy/paste the note and offer my own.  It was a neat activity that had nothing to do with autism, so I quickly followed the directions.  Copying the outline, I filled in my answers and then shared the note with my friends. 

I’ve since deleted the note off of Facebook, but I saved the answers in my writing file.  I did this to capture my thoughts in that moment of time hoping to learn from them in the future.  I come across that file every now and then and always make time to reread it.  Some of the entries make me laugh while others give me an insight to the fears I had at the time.  Many of those revolved around Ronan.  Some of them are the same fears that I still have today. 

With those worries never too far from my thoughts, I experience mixed emotions when I open the file.  I feel trapped in that some things haven’t yet changed for the better.  I also feel a bit stronger knowing that I have at least admitted that I am afraid. 

From several years ago:

- I HAVE COME TO REALIZE that I have lost...a lot of time by researching instead of doing or just living.

- I HAVE COME TO REALIZE that when I get on Facebook...I escape to my past since I'm afraid of the future.

- I HAVE COME TO REALIZE that my friends...are more of a lifeline that I imagined.

- I HAVE COME TO REALIZE that this year...is one full of questioning but also of accepting.

- I HAVE COME TO REALIZE that I'm totally terrified...of many things now that I'm a Mom.

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Special Needs Advocacy Ideas to Kickstart the New Year

Map to hope
By Cathy Jameson

Parents of special needs children play many roles.  Some roles come naturally to them while others take time to learn.  One role is being an advocate.  The more involved a parent becomes in their child’s education, in securing adequate health care, and in planning for the future, the more advocating they may tend to do.  It may take time to perfect, but being an advocate is important. 

The longer I advocate for my son, the more I learn.  The more people I get to meet, too.  Some of those people are fellow parents while others are just kind souls who want to help moms like me.  I’ve met more than a few kind souls on this journey.  They help inspire me to continue to work hard for my child.  I shared a few advocating ideas that I learned from others 2 years ago this week.  I thought about a few more to add for 2018. 

From being an armchair advocate to being the person willing to pound the pavement, there are tons of ways to advocate for kids with special needs.  Depending on your level of comfort, this short list of suggestions can be started as early as today.  And don’t think that these ideas are just for special parents.  Siblings, grandparents, teachers, therapists, neighbors – anyone can become an advocate! 

1 Join a mailing list – Autism Action Network and National Vaccine Information Center make it easy to be in the know.  Cruise their websites to learn what their missions are and to see how you can help. 

Ready to take it a step further?  Once you catch up on the latest news, consider contacting your representatives about issues that will affect special needs parents, like parental rights.  If an issue is near and dear to you, think about getting some facetime with your Rep.  Not comfortable speaking up yet?  Attend a legislative session, a town hall meeting, or a public forum.  Even if you don’t speak up, because speaking up can be nerve wracking, be present.  There is strength in numbers. 

2 Host a movie night – I am a movie documentary junkie.  I love to watch them because I love to learn!  I also love to share what I have discovered with others.  If you love to learn also, consider hosting a movie night with friends.  Invite the ones who have shown interest in what you’ve shared about your child, their autism, their vaccine injury, or about dietary changes or protocols you’ve used.  Think about inviting your skeptical friends, too.  Maybe hearing the information from a different source will open their mind and lead to new conversations.  Need some movie suggestions?  Here are just a few:  Trace Amounts, Greater Good, BoughtVaxxedForks Over Knives,  and Fed Up.

Ready to take it a step further?  Host a movie night at a local public library – reserve or rent one of their conference rooms.  Reach out to producers of the film and ask if you can do a short A and A via Skype before/after the event.  If you have the means, donate a copy of the movie to the library, the nearest university library, the special needs department in your district, or to the neighbor who needs a reminder that your child isn’t intentionally being difficult like they believe he or she is. 

Continue reading "Special Needs Advocacy Ideas to Kickstart the New Year" »


Live Through This

Champion fall out boyBy Cathy Jameson

“…if I can live through this…I can do anything…”

I heard a song a few months ago while driving around town running some errands.  It was still playing on the radio when I got to my destination.  Rocking out to it while sitting in my car in the Costco parking lot, I waited until the song ended before resuming my busy day.  Once it was over, I turned off the car and grabbed my shopping list.  Repeated the refrain as I walked into the store, I told myself, Don’t forget to look up the lyrics when you get home.  It would be a few hours before I’d make my way back home though.  When I finally got there, I completely forgot to look it up.  Last week in the midst of some other errands that had me running all over town, the song came on again.  I had just turned on the car.  Staying in the parking spot so I could listen to the lyrics, I rocked out to the song once again.  

…I’m calling you from the future

To let you know we made a mistake

And there’s a fog from the past

That’s giving me, giving me such a headache…


Golly, is that my life or what?  It isn’t every day, mind you, but I do feel like mistakes have been made.  Some people can look past mistakes, theirs and ones made by others.  They can let the past go, and I applaud them, but I will still sometimes struggle with the “I would have if I could have” thoughts that pop into my head.  They pop into my head when Ronan has another seizures, when he lashes out at his loving therapists, and when he pulls his sisters’ hair.  Those frustrating moments bring out the worst in Ronan.  They can bring out the worst in me and make me want to throw every positive thought I have out the window.    

…I got nothing but dreams inside

I got nothing but dreams…

 

Ahh, yes, those dreams.  Those dreams!  I believe in them, and I hope in them fully.  Dreams help me put one foot in front of the other.  They help me get out of whatever funk I have gotten myself into, too.  Falling into a funk - that happens, and it’s hard to get out of sometimes.  Most of the time the funk happens when I get a peek back at the past.  People have told me to stop thinking about the past and to move on.  They are usually people with much higher functioning children or people who have no children at all.  I don’t begrudge them for not understanding, but I also don’t give them too much of my time.  It is sometimes pointless to talk to them because they don’t have the same deep, emotional scars I have.  But I’d love to ask them how does one move on fully when the past lingers as much as it does in the present? 

Ronan never made it through certain stages. 

He never hit some major milestones. 

He hasn’t grown up like other typically developing kids have. 

His past included enjoying baby books, watching baby movies, and wearing diapers.  Presently, he still likes his old baby books, still likes baby movies, and still wears diapers.  The past never left.  It parked itself in our home, and on some days, it rules our house morning, noon, and night!  Believe me I’ve tried to not think about the past, but it’s right there in my face all day long.  I handle it by dreaming about the future and living as hopefully ever after as I can.  That’s because …I can do anything…

People ask me all of the time, Cat, how do you do it all?  Some days, I seriously don’t know, so I sheepishly reply, I just do what I have to do.  Ronan needs me.  He needs endless support.  I do what I can when I can.  That’s because I believe that Ronan can do anything.  If I think otherwise, I’ve set him up for failure.  This kid hasn’t failed anything!  Other people may have failed him, but he has soared.    

…If I can live through this…

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