On weekends, my husband and I have a simple routine - whoever wakes up first gets Ronan ready for the day. That means taking him to the bathroom, getting him changed, and giving him his meds. While one of us tends to Ronan, the other gets a bit of a break to ease into the day. It’s a sweet relationship my husband and Ronan have. Father dotes on son. Son looks up to father. They don’t need me to intervene or butt in the way of their weekend routine. One recent morning, though, when I got up later than my fellas, I hadn’t heard Ronan take his meds.
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Sausage, eggs, a gluten-free waffle and a cup of coffee - it’s a breakfast I make almost every day. Ronan gets the same, sans the coffee. He’d been awake for about 15 minutes by the time I’d gotten our meals ready last Sunday morning. Assuming my husband had already gotten Ronan his morning meds, I hovered over my chair just about to sit down to eat. I hadn’t gotten a good night of sleep the night before and was less than chipper that morning. So, I blurted out, “I assume he’s just waiting for his meal, right?” My husband apologized and said, “No, he still needs to take the meds.”
Grumbling, I sat down and then stood back up saying, “I’ll do it.”
Looking at me shocked, it was my turn to apologize. “I’m sorry. I’m just really hungry. I can do it.”
Feeling frustrated, and embarrassed that I’d been a bit put off, I got Ronan what he needed. Since we have to feed him his breakfast, which can take about 20 minutes to do, I quickly gobbled up mine first. It felt like a selfish move in the moment, but on days that start off on the wrong foot like that day had, I thought it best to try to take care of me before I attempted to take care of Ronan or the other people in my life.
My husband and I had the opportunity to jet away last weekend to attend a gala in Texas. We’d just gone to a dinner hosted by the same non-profit group a few weeks prior, but it was at a local venue not too far from home. With how much we have going on, we always look forward to going out on dates when those chances pop up. We especially like going on away dates when we can find an overnight sitter for the kids. My Mom would be available to keep eyes on Ronan and his siblings for the 29 hours we’d be gone, so off we went.
When we’d gone to the local event, Ronan’s siblings watched him. I almost didn’t get to go to that evening dinner because Ronan hadn’t been feeling well the day before. He had a low-grade fever and was very tired. Even though the fever had broken, he was still more tired than usual. Ronan doesn’t tell us when he’s hurting, but when we see changes in his behavior we know something isn’t right. I’d already decided that I wouldn’t join my husband at the local dinner. But as quickly as Ronan’s fever came on, it went away. With no other worrisome symptoms, I changed my mind just minutes before we’d have to leave. Darting into a dress and heels, I got to join my husband at the event for a few hours.
Keeping in constant contact with the kids that night, it was a good decision to go. This would be the first time this group met in our area. While there, we mingled, we met new people, we reconnected with friends, and we thoroughly enjoyed ourselves supporting the organization as it established itself in the local region.
While looking through the news late Thursday afternoon, I saw an article about Tylenol.
I had meant to read more about the topic after seeing this link a few months ago. Life got busy with the kids’ school year starting, and I’d forgotten to take time to check it out.
Those two articles brought back awful memories.
While the recent news stories don’t mention an acetaminophen connection to vaccines, I won’t be surprised when that information is acknowledged. For many, it’s been a go-to pain reliever for all ages, including for babies post-vaccination.
I’d obediently given the name brand Tylenol to my children when they were very young. That’s because our pediatrician at the time had provided me with free sample bottles of the drug at vaccination visits. Thankful not to have to buy it, I followed her directions at those ‘well-child’ visits – “Give it to the baby when you get home. If they’re fussy later, give them a second dose.”
I know many other mothers who followed the same orders from their pediatricians.
My children’s early childhood years are now but a memory, but I still cringe when I see chatter about Tylenol making the rounds in online parenting circles. In the past, a blanket statement from officials usually followed that chatter:
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A breeze whipped this way and that as I drove through my neighborhood one morning last week. I loved seeing the colorful fall leaves as they danced in the air in that breeze. I continued to smile as I slowed down near one of the main roads. Before I turned onto that road, I tuned out the news I had been listening to and glanced to the left of me. A family was sitting outside enjoying the fall day. Two children in cozy sweatshirts, pre-teens if I had to guess their ages, were happily tumbling down a hilly front yard. Their parents laughed as the kids rolled and rolled. Seeing them reminded me of something I said when I saw a big hill last weekend, “Wouldn’t it be fun to roll down it like a kid again?”
Wheeee!!
Changing the channel of the talk radio station as I drove passed the children, I stopped smiling. An advertisement, sponsored by Pfizer and BioNTech was on again. Every few hours, every single day, it’s the same sponsored ad: Get vaccinated! Get boosted. Covid is still here. And it’s not going away…
Neither are these annoying commercials going away, I thought.
I grumbled as I found some music to listen to instead.
Later that afternoon, I had a doctor’s appointment. It had been months since the last time I thought to bring a mask anywhere with me, so I was completely taken aback when I saw a sign on the front door.
WEAR A MASK
I didn’t have a mask.
So I walked in without one.
Heading toward the receptionist, I saw another sign. It was still demanding but with a cutesy drawing:
Bee safe. Bee kind. Wear a mask.
(There WILL be a cute photo here if TYPEPAD ever works out the kinks in their media upload!)
That’s so last year, I said to myself as I looked around.
I was happy to see that other patients had been unaware of the mask request as well. When I’d made the appointment two weeks ago, the scheduler failed to inform me that their practice was holding onto a covid protocol that many other places have dropped. I may have considered the request had a mask been provided when I arrived to their facility. I would have taken the request a bit more seriously, too, had the employees worn their masks over their mouths and their noses. But when I encounter a ‘rules for thee but not for me’ attitude, I can’t and won’t feel the least bit guilty about not going along with the request.
Note: Our platform provider has been having technical issues with media uploads, so our photos are missing or wonky. We hope for a solution ASAP. The photos are often the fun part!
By Cathy Jameson
For today, I wanted to write about a news story I heard on the talk radio station. It was all about the Halloween candy safety tips, to include trusting the FDA - experts in food safety. Truly an on-topic topic in our community, I changed my mind about what to write. That's because the next day, a friend sent a link that was much more terrifying than encountering botched Halloween candy. ENTER IF YOU DARE.
Watching the link, a trailer for a soon-to-be streamed documentary, I gasped. I’ve heard of the phenomenon, but have shied away from diving into it. It’s a worry, for sure, because close family and dear friends have opted - or were forced into taking the vaccine. Even so, I wasn’t ready to see video of people dropping dead, seemingly out of the blue. It’s always important to know the pros and cons of taking a medical product, but I still didn’t know if I’m ready for all of the information.
Someone wants people, including me, to know though.
If you’ve recently lost someone who died suddenly, my condolences. My heart aches for those who didn’t know this might happen.
Whatever you call it, the jab, the clot shot, or simply the fastest tracked vaccine, could this died suddenly be a true side effect, or is it simply just a coincidence people are experiencing? What do you think? Have you been brave enough to read all about it? As terrifying as it is, I know that I really do need to read more about it.
Cathy Jameson is a Contributing Editor for Age of Autism. Note: Our Matching Gift Fall Campaign is in full swing. Please consider a tax-deductible donation. Paper: Autism Age, PO Box 110546, Trumbull, CT 06611 Thank you.
Profiles of the Vaccine-Injured: "A Lifetime Price to Pay" (Children’s Health Defense) Are vaccine injuries really “one in a million,” as governments and public health experts constantly tell us? This comprehensive look at the evidence by Children’s Health Defense, illustrated by nine real-life stories of serious vaccine injury, exposes health agencies’ soft-pedaling of vaccine risks as a dangerous lie.
A friend’s son recently asked me a question. Like what the other young fella said to me, our conversation stayed with me long after it was over. We were out to dinner the night this kiddo and I got a chance to talk. After getting Ronan settled in a seat next to my husband, the only other available chair was at the other end of the table with all the kids. I’d miss out on the adult conversation but was happy to catch up with the kids. I’ve known them for years, and they’re really fun to be around.
Plus, I was happy for a tiny break from keeping constant eyes on Ronan.
While eating my fajita, the friend’s son and I started talking. He’d watched me make sure Ronan had everything he needed before I sat down. He’d watched Ronan get settled in and also watched my husband get Ronan fed. I like to see typical kids quietly observing Ronan. I can always tell when they are genuinely curious and politely thinking about Ronan and what’s happened to him. I like it when they later ask questions that are thoughtful, too.
“Do you like taking care of Ronan?” the six-year old asked.
Instant guilt hit me as I took a bite of my dinner. I thought he was going to ask what apps Ronan had on his iPad, or why was Ronan wearing his yellow headphones in the loud restaurant. Chewing slowly on that bite gave me a minute to formulate an acceptable answer to his weighty question.
“You know what, buddy? It’s a lot of work to take care of him, and I always hope that I’m doing it well.” He nodded his head, but I could tell he wanted a more precise answer. He wanted a Yes, I do like taking care of Ronan, or a No, I don’t like it kind of answer. He did not want a vague holy moley, I’ve never been asked that question before kind of answer that I’d just given him. Read more below the jump.
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I saw a young boy a few months ago at a picnic. We’ve had some ‘in passing’ conversations since then – a quick hello, how are you doing, it’s nice to see you again kinds of small talk. Ronan hasn’t been going to church with us lately, but, last week, the boy remembered seeing him at that picnic.
While in the parking lot waiting for my daughter after a game one day last week, the boy, who’s about 7 years old, saw me and said hi. He asked what we were doing, and I told him we were going to go home since we couldn’t stay for the next game. “It would be too much for my son.” He very quickly replied, “He’s the one who was in the yellow headphones who was in the wheelchair.”
Taken aback, I said, “Wow, yes. Good memory!”
I continued, “It’s actually a stroller that Ronan uses when he gets too tired to walk. But, yeah, that’s my son.” I then gave the boy a little more information about why Ronan had those yellow headphones and why he sometimes needs that stroller. “When he was much younger, he could do things like other little boys could do. But then, Ronan got sick.” I shared just a few things that happened to Ronan then and added, “Ronan is non-speaking now.”
The boy’s sister was with him and had tons of little kid questions, like Can he say anything? How did he get sick? Is he okay now? Since I don’t know their family very well yet, I answered each question with very simple facts and also kept the conversation very G-rated, meaning no talking of vaccines. The boy had stayed quiet while his sister and I were talking.
The next day, I saw the boy again. “Hey there!” I happily greeted him. His greeting had a different emotion than mine. “I feel bad for Ronan,” he told me with sad eyes. Completely taken by surprise, I said, “Oh! Why, buddy?” I had spared him lots of details, like that we saw Ronan decline most after vaccinations, but I could tell what little I did share the day before had really affected him.
“Well, he…” the boy started, “…he can’t talk and do things by himself. What if he wants to tell you something?” I told him, “You’re right. Ronan still can’t do some things, but remember when I said Ronan can communicate? I shared that he can type, and he can use sign language, and he can write with a pencil, and he can show us things that he wants.” Quietly, the boy nodded his head and said, “Y-e-s, I remember.” Still, the boy’s eyes told me that he was quite moved knowing that my son couldn’t do things the boy could easily do.
My next words needed to be encouraging.
“Ronan is a pretty happy kid. We keep him safe and as healthy as we can. When Ronan pops into your mind, like it did just now, maybe you can say a little prayer for him. Or maybe you can say a little prayer for the person who’s helping him. When you see me without Ronan, it’s because he’s being taken care of by someone else. It would be so neat if you could say a little prayer and ask God to bless Ronan or bless our helpers. It’s because of our helpers that we’ve been able to keep Ronan happy and healthy, too, and I’m so grateful for them.”
It was a big ask, but the little boy said he could say a prayer.
Knowing I’d captured his full attention, I continued, “And maybe you can add a thankful prayer for what you get to do, too. You get to do lots of pretty neat things, don’t you? You get to go to school, and play with friends, and go outside and explore new places. Don’t feel bad that Ronan can’t do that stuff, but be thankful that you can do what you want to. I think that it’s a really good thing that you’re able to things.” Without saying anything, he nodded. Then as quietly as he had approached me, he turned to walk away and said, “Okay…bye, Mrs. Jameson.”
I thought I sounded convincing, but time will tell if I helped turn this kid’s frown upside down. I’ll look forward to our next meet up. I’ll wonder if the boy will tell me that he thought to pray for my son. I’ll hope that he’ll share that he’s gotten to do something amazing. I’ll also say a little prayer myself. I’ll pray that he’s one of the kids who, when he grows up, will make the world a better place for a child like mine.
Cathy Jameson is a Contributing Editor for Age of Autism.
Kim shared that Age of Autism has an Instagram page. How exciting! I used to post on Instagram, but I’ve gotten too busy to keep up with my personal page. I am so glad Kim has time to manage each of our AofA social media pages with fresh content. If she ever needed new photos to post on AofA’s new page, I think these are insta-worthy. I like that each of them comes with a story—some yet to be written down.
Several Christmases ago, we had a terrible bowling incident. These next two photos document a more recent bowling game that came with no injuries.
Ronan’s siblings took those bowling pictures of us. The kids give me such a hard time when I sneak the camera out at Mass to take photos. I know it’s not the most reverent thing to do, but….look at that photo of Ronan reading along! I love that I can snap his progress in church, one of my favorite places to be.
Sometimes it’s the little things that make my heart melt. Other times, it’s the very big things that have me beaming.
NOTE: Our Typepad platform had tech issues yesterday. If this post looks wonky, that's why, and we'll fix it as soon as able. Thanks.
By Cathy Jameson
I had a different idea for this week’s Sunday post, but after scrolling through FB on Friday evening I changed topics.
Joshua Coleman has been an advocate in our community for several years. Dad to a son with vaccine injury, he took his advocacy, and his talents, to the streets with V is for Vaccine.
When able, Josh records his efforts and quickly shares what he’s learned with other. I’ve always appreciated that about him. While I stay home taking care of my family, Josh and hundreds of other advocates have shown up. To the state capitol. To Disneyland. To Broadway. To the races, national conventions, and more. I’ve gotten to watch a few events as they were livestreamed. Standing in solidarity, sometimes in silence, it’s incredible to see.
When I’ve missed a livestream, I can’t wait to watch the recorded video later to see who was there, to hear what was said, and to also thank God for the bravery of those present. Some of those videos can be found here. Parents For Healthcare Rights - YouTube If you're Joshua Coleman, your photos and videos are very creative and informative. They feature parents, supporters and the public. They have been shot at small events and at blockbuster venues. Those who partake in the rallies have made local headlines and have even found their way onto news segments in mainstream news.
Uploading videos to the YouTube platform is commonplace, unless you're someone like Joshua Coleman though. Before his work is completely removed, head over to his channel and watch what he and groups like V is for Vaccine have done. Josh has reported that his videos are now slowly being taken down. If you appreciate what you see, tell him thank you. And please consider supporting the incredible efforts these parents are doing on behalf of so many.
Cathy Jameson is a Contributing Editor for Age of Autism.
This weekend, Ronan's younger brother toured a college with my husband. A fun guys' weekend away, the campus they were checking out has almost everything on the checklist—the major he's interested in, internship possibilities, (somewhat) affordable tuition, ideal location, and just a bit of a drive away while also being kind of close to home. One thing would be missing though...Ronan.
As Willem was packing his overnight bag, I asked, "Got everything?"
He quickly said, "No, I need Ronan. I want him to be able to come with us and also to stay with me when I live there."
Cue the tears.
Ronan's big sister, Fiona, has shared with us that she’s missed Ronan quite a bit since she's been away at college. We hardly got to see her when covid restrictions were in full swing on her campus her first year away. Thankfully, she was able to come home for every break, plus some bonus long weekends, during last school year. Every single time she came home, she jumped right back in to help her brother.
That, in turn, always helped me.
With how giving of her time she was long before going away to school, I encouraged Fiona to apply for a scholarship that crossed my newsfeed. She and I had worked hard to secure others successfully, so I was excited that she wanted to submit an essay for this one. It would be a much, much tougher topic than some of the ones she'd written about before, but I knew she'd be up for the challenge.
I had the radio on as I drove into town by myself the other day. Catching up on some morning news, I was quite pleased to hear the radio announcer share that, “Most Americans have turned the page on the COVID pandemic...” I wanted to high five someone after hearing that. Another tidbit from the poll was also encouraging. “The public’s perception of personal risk also is a low point, and people are starting to pick and choose more where they deem it necessary to take precautions like masking.”
Good for them, I thought.
People, lots of people, dropped the masks many months ago. I know a few who still, maybe out of an abundance of caution, have kept theirs on. Last week, when an issue popped up that needed medical attention, I made an appointment with our doctor’s office and was sternly reminded to, ‘Bring your mask!! It’s required to wear one!’ I had bought several washable, fabric-styled ones during the lockdown but could not honestly remember where I’d put them. I put them away so long ago. The only time we’ve been asked to wear one lately has been at a doctor’s office.
Thankfully, we haven’t had the need to go to the doctor too many times.
The radio announcer continued to another segment after reporting on the Axios. The weather forecast would be next. Once on the air, the meteorologist bellowed, “Across the arena, we’ll see some clear skies and lower temperatures!”
Across the arena.
Arena? I’d never heard that term used to describe where I live. But with that recent poll, and with the ever-constant news of the ever-available boosters, it did feel like I was in some sort of game. It’s not like the Game of Life I was in, but more like The Hunger Games.
I love the Game of Life and always look forward to when the kids want to play it. I don’t love The Hunger Games so much. When the series came out, I shied away from it. My fifth child was born the year the first book was released. I was too busy to read it or get caught up in the hype. Years later, when the movies came out, I decided to watch them. I had limited knowledge of the storyline still but knew that it was a sort of survival story.
I’d just had a short conversation with a young girl who’s in grade school. A typically happy child, I was sad to see that her usual smile had been replaced. She’d shared that she’d been disappointed about something and then looked up at me.
“Mrs. Jameson?” she quietly paused. “Everything changed. Why did it have to change?”
Compared to last year, things had changed. I thought for the better. In her young mind, though, there’d been too many changes and in a short amount of time. It was too much for her. It confused her, it saddened her, and I could see a physical change in her because of it.
For many districts last year, when the 2021 school year began, students were social distancing, sneeze guards were being used in classrooms, and masks were required by all. Students and faculty tippy toed into that school year, trying not to breathe too big a sigh of relief. But for many, it was progress just being in the building. And full-time, too! Some teachers were still limited in what materials they could use to teach lessons (i.e., math manipulatives, science lab equipment, shared art supplies), but they, being naturally creative, made things work.
Other places were not so fortunate.
Some schools remain closed. Or were only open part-time. Or were only open for small groups of students at a time. Or had kept the intense restrictions that other localities had long removed. Children, including the ones not affected by those latter protocols, were understandably confused. The adults were making decisions that didn’t make sense. My own children have expressed how awful that time was for them.
“One week we did things a new way, the next week we had to do something else. They’d tell us to hang on, only one more month, maybe, and then we’d be back to normal. But that month would go by, and we’d still be waiting for things to go back to normal…or at least to get better.
My jaw dropped as I listened to a phone message that came in over a week ago. It was from a woman who works at an agency that helps us secure services for Ronan.
“Hi, Mrs. Jameson. I’m So-and-So from the agency. In reviewing Ronan’s renewal paperwork, I think I see an error. I really need you to call me back as soon as you are able so I can go over it with you. On the form, it looks like you indicated that Ronan was not living full-time in your home. Instead, it looks like you indicated that he is living in prison. We cannot continue services if he really is in prison…so, you really need to call me right away because we need to terminate services if his residency has changed.”
Stunned, I hung up the phone.
Prison? Are you kidding me?! Here’s right here next to me! What the heck did I check off on that form??
I’ve made mistakes before, but not one as bad as this one. Looking at the clock, I realized it was too late to return the call and speak to Ms. So-and-So. The office was already closed for the day. I would be able to leave a message, though, and quickly did that.
Hi, this is Cathy Jameson. I just heard your message and can assure you that Ronan lives at home. He has never been in nor has he ever lived in prison. He lives full-time in our house and is right here next to me. I’m not sure which box was checked off indicating otherwise, so please, please call me back as soon as you are able. If I do not answer the home phone, please, please, please try my mobile phone…thank you.
After hanging up, I racked my brain trying to remember when it was that I filled out that paperwork. It would’ve been months ago. Think. Think. Think! After a few minutes, I remembered. I’d received a packet from their office back in the spring and recalled that it was pages and pages long. I try to keep a copy of every form that we’re required to fill out, so went to my office to hunt down that copy. Looking through the files, I thought, Wait a minute…I didn’t fill out that paperwork. I called that information in!
I had the option to either fill it out and mail it in or call the agency with the information. Opting to call it in, I waited until all the kids were out of the house. That way, I wouldn’t be interrupted while I was on the phone. I remembered that I spoke to a young representative who went section by section with me – together, we updated Ronan’s stats, to include that he lived full-time at home with his family! If someone on their end messed up my son’s benefits, I would be more livid than I already was. I could do nothing more about it until I got a call back, so I tried to focus on what I needed to do next – pack for an end-of-the-summer quick trip to the beach.
Friday morning while driving to Surfers' Healing (which is always one of the best weekends ever for our little family!) we had lots of time to talk in the car. I told the kids about the phone call and how shocked I was to hear that they thought Ronan was a jailbird. Can you imagine… Ronan behind bars! We had a good laugh, but then things got a little bit serious.
“Will he really lose his benefits, Mom?” one of the kids asked.
In the beginning, Pfizer advertised that Science Will Win. Back in 2020, it sounded like all of Science would work together to overcome the pandemic. Fast forward to last week.
It looks like Science doesn’t want to play in the same sandbox anymore.
Moderna is going after Pfizer, suing them for vaccine patent infringement. When I heard that news, I immediately thought of two bullies on a playground. Bullies think they can do whatever they want. Sometimes they get what they want by force. Sometimes others assist them in their goal. Moderna and Pfizer, with the help from the US government, gained billions in a short amount of time. Countless mandates, encouraged by the government, helped those two companies stay ‘leader of the pack’ even today.
Pfizer’s Comirnaty brought in more than $36 billion in sales globally last year, and analysts expect it to bring in nearly $33 billion this year, according to FactSet.
Moderna Inc. booked $17.6 billion in revenue from its vaccine last year. Analysts project more than $21 billion in 2022.
Using similar tactics as last year, the government predicted “a pretty sizeable wave of infections” again this fall and winter. It would not be surprising if both of those pharmaceutical companies’ profits increased. That’ll happen when updated covid booster get approved.
Even though other manufacturers joined the warpseed-race to create and sell their own liability-free products, like the less popular Jansen and the now-available Novavax, the now-at-odds pharma giants garnered all the attention.
The Pfizer and Moderna vaccines deliver genetic instructions for the body to make copies of the spike protein. The lesser-used Johnson & Johnson option uses a cold virus to deliver those instructions.
Note: Dinner. Dinner. Dinner. Dinner ad infinitem. And when we have special diets - fuggedabouit! Cathy has shared a fun post today with 3 GF recipes. Mangia!
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By Cathy Jameson
It’s that time of year when things are starting to get really busy – school schedules, sports schedules, after-school activity schedules – those will be full again soon. As we gear up for those new routines, I thought back to what helped our nights run better and remembered this post I’d shared with friends and family. I’ve added a few things to the post, including some links to brands we now use.
During past school years, when my kids were in grade school, I could get away with last-minute meal prep for my family. Those times, I would get so busy (or distracted) when 5:30 rolled around, and I'd find myself panicking. It would be around the same time that my kids' tummies would begin to rumble. That's also when my typical son, who could happily eat 24 hours a day would yell out, "Hey, Mom! What's for dinner?"
Dinner?
He can't be serious, I'd think. The kid just ate snack...
I'd slowly glance at the clock and realize...TWO hours ago.
Oh, no! Dinner!
Dang it.
I did it again, I’d mutter to myself.
You'd think that I'd have this making dinner thing down. I'd been making and serving dinner for our family of seven for a long time at that point. But, I'd get caught up in something else or lose track of time. Those nights, it would be a race against the clock to thaw some meat, to figure out what to do with it, and to begin the prep work for whatever sides I thought could go with the meal.
Happily, none of the food I'd end up throwing together last minute tasted terrible. Quite the opposite! They were some of the best dinners I'd ever made and garnered lots of compliments--even from my pickiest eater! But who wants the pressure of racing against the clock to get a meal on the table with five hungry, hungry hippos underfoot?
Kim shared something last week that reminded me of an incident that happened at our house back in March…
Tuesday night, 9:15pma
I wasn’t going to go to sleep yet, but I just needed to be done with the day. My husband had been out of town for a while, and I was exhausted from trying to do all the things for all the people. After family prayers, and as soon as Ronan was tucked in his bed, I told the kids I needed to go to bed, too. All I wanted to do was get off my feet and watch some mindless television.
So I did.
9:19pm
Pajama time.
I had just gotten under the covers. I had just opened my laptop. I had just started to watch a silly show when Ronan’s younger sister knocked loudly on my bedroom door.
“MOM, MOM, MOM!” She was frantic.
I had just said goodnight to her, so I was not expecting her to come barreling in my room as loudly or as nervously as she did.
9:23pm
“Whoa, what’s up, honey? I asked.
“MOM, the police are at the door. The police. They’re at our door!” she blurted out quickly.
I shot up from under the covers. When I stood up, I heard the doorbell. What on earth?? I had heard a faint doorbell chime a minute earlier but thought it was part of a show I was watching - some of the people in the show were sitting in the living room of an apartment. They were talking about friends coming over, so I thought the doorbell I’d heard were those friends.
Nope, it wasn’t in the show - it was coming from my house!
I bolted out of my bedroom so quickly. After running past Izzy, I grabbed a sweatshirt, threw it on, and ran to the front door. The last time we’d needed the police’s assistance at home was years ago - when Ronan wandered one very cold, winter night. With my heart pounding through my chest, I peeked through the front door window and was startled. Staring back at me was a very young woman. I thought I knew everyone on our neighborhood police force–who were all men. I could see her bullet proof vest, with POLICE blazoned across it, but couldn’t make out much else.
In the mornings, Ronan gets access to the tablet, iPad or the TV but only after he’s changed, taken his meds, and eaten breakfast. If we don’t get those basic things done, the day can start off on the wrong foot. So as to get his day, and ours, off on the right foot, we’ve kept this routine for years…
File this under: Non-verbal autism can suck it
So many people say, our kids are in there. They are. Ronan is fully aware and somewhat abled, yet he is so very delayed and severely disabled. He needed something today and kept trying to get me to help him. For the life of me, I could not figure out what he wanted.
Before he got frustrated, which can happen quickly - and has happened quite a few times this week, Ronan reached for the keyboard. He typed:
Mom I ke
Think. Think. Think. What did he mean? I had no idea. I asked Ronan to type again.
Mom I ke
While he did that, I mentally retraced his last steps. OH! I knew what he wanted. Ronan was trying to get the tablet, which I'd tucked away in my bathroom.
Mom I ke = Mom, I need the key.
He had just finished the morning routine, which he knew needed to be done before playtime started. Here he was reminding me instead of me reminding him! It was so simple this asking but required an enormous amount of patience and problem solving skills – mine this time, not his. Some days I feel like am severely lacking in both of those...but not today. I opened the door and gave Ronan the tablet. He beamed at me and then confidently walked away.
Both Cathy and Kim took a few days off this week. Cathy wrote this post in 2016. As readers know, we were Mom yesterday, we are Mom today and we will be Mom for all of the tomorrows we have.
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By Cathy Jameson
Ronan has regressive non-verbal autism. Losing his speech years ago, I never knew how unbearable the silence that followed would be. When Ronan needs me, he’s able to show me in a variety of ways that he needs help. Sometimes he comes to me and reaches for my hand. Other times he signs “mom” with his pointer finger pointing at his chin. Rarely has he done it, but he has called out to me using his voice to get my attention.
Eye contact accompanies most of Ronan’s requests. Piercing me with his dark brown eyes, I wait for Ronan to tell me what he needs.
Hey, buddy. What do you need?
Ronan may or may not sign his next request.
He may or may not gesture what he wants.
He may or may not take me physically to where he needs my assistance (like to the kitchen cabinet for a snack, to the refrigerator to get a drink, to the living room to plug in the Wii, or to the den to watch a movie).
Since Ronan cannot tell me verbally what he needs, what follows is sometimes a game of charades.
Do you need help?
A snack?
A drink?
A game?
A movie?
When Ronan can’t communicate what he needs, which is quite often, we’re both left frustrated. Since Ronan can make some vocalizations, I’m encouraging Ronan to make them after he’s gotten my attention.
Em.
Ba.
Da.
Um.
The sounds don’t make sense yet, but since vocalizations can turn into verbalizations, I celebrate every sound that Ronan can make. Others celebrate with us, too. Over the years, I’ve shared a few of those happy moments with family and friends.
I don’t recall why the day was so bad, but look how things turned around when I heard Ronan call for me in January 2011:
The day drastically improved. Cathy Jameson will now be known as "Ah-mum-mum" Thankyouverymuch to Ronanfor calling me that to get my attention.
I was over the moon excited that Ronan called for me by name in September of 2011:
A few years ago a friend shared that she had a dream about Ronan. Just as she was going to tell us more, Ronan’s younger sister, Izzy, who was 9-years old at the time, excitedly interrupted, "Ronan could talk in your dream, couldn't he?!"
The friend, who was equally excitedly, said, "YES! He could!!"
Izzy replied quickly, "Everybody who dreams about Ronan dreams that he can talk."
I added, "And they say it's not just one or two words he says. At least 20 friends have shared that it's been ..."
"...a whole conversation!" my friend interrupted as she finished the sentence for me.
Yes, a whole conversation.
My friend was one of the lucky ones. She got to hear Ronan talk. Not just talk – he talked to her and with her. Can you imagine? A whole conversation with my non-verbal child. I would be over the moon if that really happened!
Long before that conversation, and ever since then, I’ve dreamt for the day that Ronan could talk to me. I don't mean fall-asleep-and-dream-about-it. I mean I dream as in I hope, and I pray, and I pine, and I plead, and I wait (impatiently) for that day to come. Before Ronan lost his speech, he had only just started to talk. After he went completely silent, we’d occasionally hear some almost functional, verbal language. He’d sputter out a few typical words: mama, dada, -oggy (for Doggy), -ight (for light). And then he wouldn’t. During that time, Ronan had never—and still has never, spoken a whole conversation.
It hasn’t happened to us in a very long time. But the potential for my son to wanderer is something we will never forget. It happens. And, for some, it can be deadly. To the three families whose children wandered recently – and who died, I am so sorry.
Eternal rest grant unto them, O Lord,
and let Your perpetual light shine upon them.
May their souls and the souls of all the faithful departed
rest in peace.
Amen.
--
From a memory from 2014:
I had to place a service call this morning. The technician hadn’t been to the house in a while, so he forgot that I have to unlock several locks before he could come inside.
“Hey. Thanks for coming by,” I said as he walked in.
Before continuing the conversation, I closed the door and made sure the alarm was active. The technician waited for me in the front hallway as I peeked into the living room around the corner. The big kids were at school, so it was just Ronan home with me. I knew I’d have to accompany the technician away from where Ronan was playing to another part of the house. He was happily occupied, so off the technician and I went.
We had to go out the back door to look at a potential problem area. I said, “Hold on,” and stepped in front of him before he could reach for the doorknob. I held my breath, unlocked the lock, and turned off the alarm. "Okay. It's opened," I said and moved aside.
A few minutes later, we were back inside. I could hear Ronan in the same spot that I’d left him—playing Wii and listening to his music.
The technician and I sat at the dining room table and went over some information and some paperwork. With the paperwork signed, he was ready to go. I thanked him for his help and said, “Let me walk you to the door.” The technician started down the hallway ahead of me. As he reached for the doorknob to let himself out, I said, “Hold on a sec...”
He stopped mid-step and mid-reach. Then he said, “Oh, that’s right. The wanderer.”
The Wanderer.
It could be a book title. A song title. Or the title of an epic movie. But it was not any of those. It was a term made in reference to my son.
I replied on a friend's thread on Facebook one morning back in 2015. The topic was all about vaccines. I don’t comment much on any social media threads like I used to. It’s not because I don’t have anything to say. Believe you me, I still do. But if I did decide to comment more, I would consider using this same reply again.
--
A friend and I have similar views on vaccines. One of her friends is still searching for answers though. Good! There's a lot to know about them.
I encourage people to read as much as they can about on this topic. I did just that on my friend's FB thread – read! Read everything! As the day went on, other people chimed in on the thread, too. Many of us had similar views. The friend's friend who is on the fence questioned us. Good again! When it comes to vaccines, I think people should be questioning what they're told.
I gave my two cents and then a little bit of advice. I know that not everyone holds the same opinion as I do, but I was hoping that sharing my thoughts would make a little bit of a difference.
It didn't.
The friend's friend found the source I shared questionable. Another mom of a vaccine injured child had offered information as well as data from reputable sources.
Her input was questioned, too.
As the thread got longer, and as I could see that my replies were not cutting it, I knew I would soon walk away from the conversation. Before I walked away, I left one more comment:
I understand the need to find cold, hard facts, but it didn't take a research study, a blog, or a stack of statistics to educate me on vaccines. It took my sons' vaccine injuries to open my eyes and to show me that vaccines come with risks.
Despite what was written about them, vaccines resulted in irreversible damage. We live with the result of that damage today, even 10 years later. So, do keep reading and asking questions, but don't forget to consider parents' input -- that input may not be part of the CDC's data nor on some science groups' website, but it can be just as valuable.
Hoping you find the answers you are looking for.
Everyone has their own thoughts, their own opinions, and the right to believe what they want. That includes vaccines. Based on personal experience, as well as the information I have –and that I keep reading about on vaccines, I am firm in my belief. But some people, like my friend's friend, is not there yet.
I was asked two sets of great questions in the last week. The first ones were from Ronan’s young sister:
If Ronan can make sounds with his vocal chords, why can't he talk? He can make sounds, but why can't he put them together?
The second set of questions were in the comments of last week’s Sunday post from one of our long-time readers. She asked:
How did Ronan learn to read and type? These are complex global skills that show high intelligence. You are a writer. Ronan may have inherited your language skills. Is he now able to type full descriptive narratives? Does he ever attempt to draw pictures? Can he read cartoons?
Such great questions! I’ve thought about all of them every single day over the last few days. The response I give his youngest sister, and one that I use when other children ask about him, is that Ronan experienced typical speech and development skills, and then he didn’t. His oldest sister remembers hearing Ronan being verbal. But the few words he had started to fade, as did other skills he’d mastered. I didn’t give a huge scientific explanation to my daughter, even though she knows the medical history that played a role in that loss of speech. I did share that even though Ronan struggles to tell us what he wants and needs verbally, he’s wowed us with other forms of communication. He can read, type, sign and gesture lots of things! That brings me to answering some of the next set of questions that Emmaphiladelphia asked.
[I hadn’t realized how much I wrote in reply until I began to edit this post on Saturday morning. But like I said, I spent days thinking about those great questions I was asked. Here’s a bit of history with hopefully some helpful information for other moms and dads.]
Ronan learned to read early, like his big sister did. She was 3 years old, he was around 5 years old. I remember that both Fiona and Ronan loved books. When they were very young, I spent quite a bit of time reading aloud to them, beginning when they were newborns thanks to Jim Trelease’s TheRead-Aloud Handbook. It was one of the best tools I’d discovered as an early education teacher. After naturally incorporating his suggestions in my classroom, I was excited to be able to also with my own children.
My own children were drawn to print-rich items in our home environment - toddler books, children’s magazines, puzzles, flash cards. Even though Ronan would later be enrolled full-time in a preschool that served children with special needs, he’d still see that material in the playroom and in our dining room where my typical children would be homeschooled.
As Ronan entered elementary school, he eagerly learned how to use sign language. I’d used sign language while teaching, not because I had students who needed me to sign to them, but because it was a neat skill I learned that I wanted to share with my students. Later, as a young mom, I used it when Fiona was a toddler. She picked it up very quickly and actually preferred to sign even though she had expressive verbal language skills. When Ronan began to go silent, I began to sign with him when I spoke to him. We knew he could hear us. We knew he wanted to tell us something. But he could only vocalize - not verbalize, his responses. Besides starting to label everything in the house with index cards or flashcards with names of objects, we began to sign everything we could for Ronan. The day he put ‘two and two together’ was an amazing day. He signed ball after seeing a picture of a ball. He turned and signed ball toward me to let me know that he knew what the image was. I was floored. I was so excited and motivated to teach him more! Ronan was all of that, too, including on the day that Ronan signed cookie and immediately got a cookie to eat.
An FB memory from 2010 had me smiling last week: I love Ronan more than the last bread and butter pickle left in the house. Usually he gobbles them up. Happily, he turned it down so I could eat it. I could eat those tasty treats all day long.
Ironically, that memory popped up the day after I again had the last bread and butter pickle. I didn’t offer that last one to Ronan though. I didn’t want to share it. I wanted it all for myself. I don’t usually do that; but that one night when I wanted just a little peace and quiet, I ate that last pickle.
And I enjoyed it.
The next day, after reading that memory, I could’ve felt stabs of regret for not sharing. But I didn’t. That’s because I had a brand new bottle of pickles ready for Ronan. Seeing the new jar in the pantry reminded me of a shopping trip he and I took many years ago. Outings these days aren’t always successful for him, but that day all those years ago, with tons of patience and great communication, it was one of his best days…
From another memory, written and shared with family, back in the spring of 2015…Enjoy!
Ronan continues to be on a modified school schedule. Lacking energy to sustain a full academic day, he only attends a few hours of school each week. Since starting the modified schedule, I’ve had to do a lot of juggling. Finding someone to watch Ronan during the day doesn’t always work out, so he ends up accompanying me wherever I need to go.
Errands are harder.
Getting to appointments takes longer.
Meetings take careful planning.
Since we’re always hoping Ronan will gain more independence, I welcome the opportunity to bring him with me. Most of the time, it works out well having Ronan tagalong to places he normally wouldn't go. He gets to see his community during regular business hours. He gets to learn and master new skills. He gets to interact with people and they with him.
As much as I’d rather he could have the energy to be at school learning, he’s been able to learn valuable lessons when we go out. Some simple things he’s had to learn over the last year include:
-Learning how to walk calmly to the car when prompted (instead of acting out because he wanted to stay home and watch more YouTube videos).
-Staying buckled in the car seat (instead of attempting to wiggle out because we didn’t get more French fries).
-Keeping shoes (and clothes) on while we shop (instead of taking them off when things didn’t go as planned).
-Keeping shoes on while we’re in the car (instead of throwing them at Mommy while she’s driving).
-Using appropriate communication (instead of pulling Mommy’s hair when we went down the “wrong” grocery store aisle).
Being able to learn those simple things has helped when we go out and about, but Ronan still has lots yet to learn. I do as well. I need to plan my time better so that I’m not rushing Ronan into situations he’s not comfortable. I need to prepare the environment better as well as prepare those who will interact with Ronan. For instance, when Ronan must accompany me to a doctor’s appointment that I’ve scheduled for myself, I should remember to show Ronan a picture of where we’re going or at least drive by the place with him one time before we actually need to go in it. I should also let the provider know that my visit may take a few minutes longer than usual. That’s because Ronan’s curiosity, as well as his anxiety and his sensory issues, can prevent a smooth transition into (or out of) the parking lot…the waiting room…the exam room…or meeting room that we’re going into. I need to remember that sometimes things will take longer. That things won't go as planned. That we are that try, try, try, try one more time family. I also need to remember one more thing.
It’s the thing that must not be named, you know…*whispers* the covid vaccine...
Many have already shared tons about “it” and about other “its” over the years. When I think back to when I first wanted to know more about vaccines, I think of the OG, the original voices who spoke up. Those voices spoke for a growing many. Their vaccine stories were heard in Washington, D.C. back in 1999. Parent-founded groups had lots to say back in the day about it and were able to get their message in print, too. Others shared their plight and other important information in more recent documentaries.
Fast forward to now, and a new generation of people want to talk about it. They want what it’s done to them and their livelihoods to be known for all to see.
They join thousands of others who’ve questioned vaccines after vaccine injury. Those others have ‘taken it to the streets’ before and marched in our nation’s capital. They’ve caught the ear of influential people who’ve also offered to help the cause. Over the years, moms headed to their own state capitals to rally the people. From one side of the country to the other, moms got their message about it out there. Dads did, too.
It isn’t just parents and patients who’ve raised their voices and their concerns; some medical people were on the right side of truth and kept the conversation going as well. They knew it was worth talking about vaccines. But not enough people in the mainstream medical community want to warn that these liability-free medical products are risky.
Instead, it remains the patient themselves, or their parents, to keep raising their voices about vaccines and vaccine injuries.
The further we get back into real life with fewer restrictions, the less I hear some people talking about the covid vaccine. Of course, certain others (mainstream news talking heads, corporate media, and Hollywood spokespeople) still can’t say enough about it. They insist that it’s the only defense we have against the covid illness. They believe it’s the safest thing for you.
People’s personal stories say otherwise.
So, can we talk about it, the covid vax? Sure! Yes! Why not! They are still under Emergency Use Authorized (EUA). They are still causing a divide among families. They all still come with potential risk, even the new one that the FDA recently recommend for EUA.
Of course, we should talk about them, these covid vaccines. We should because the propaganda has not waned. The risks have not lessened. And the side effects, ones known and ones yet to be discovered, are very real.
Note: Grab a coffee, this post has donuts! No, really. Keep reading.
By Cathy Jameson
Ronan can sign his basic wants and needs. He can type them out also. We continue to pray that he will one day regain speech, but until that happens we encourage Ronan to communicate in ways he’s able to.
One night last week, when he couldn’t sleep, he came to my room and sat on the edge of my bed. He’s a quiet kind of guy, unless his favorite songs or movies are playing. Then, Ronan can be really REALLY loud – to the point the kids will politely move him and his ipad to another room. They don’t want to squash his happiness; they just don’t want to hear all of that happiness right next to them. When Ronan came and sat on my bed, he was exceptionally quiet. I knew he wanted something but couldn’t figure out what. My laptop was open, so I quickly asked Ronan to type to me. The prompt I gave him was, Hey, Ronan, what do you want?
mom my lijke ipad
ronan, it's bedtime
mom my like ipad
it's too late to play. it's time for bed.
mom my like ipad
you can play on the ipad in the morning. it's very late, so it's bedtime now.
I goofed on Sunday and set this post for 6:00pm instead of am! So Cathy missed much of the day, and I'm sure readers missed her. Call it Senioritis on my part, the old age kind. So sorry! Enjoy Cathy on a Monday. Tomorrow, Frau Koma Part 2 - as we look into school violence in Adriana Gamondes' chilling three part essay. Thanks.
By Cathy Jameson
One of the contacts we have with one of Ronan’s program called last week. She needed to go over some paperwork that gets reviewed and refiled yearly. I don’t usually dread the conversation I have with her like I do when some other people call. For the most part, it’s simple stuff that she asks about.
How’s he doing?
Any changes in his health or development?
Any hospitalizations or E.R. admits in the last 3 months?
Any problems with medications?
After she asks those questions, we then review goals. I was stunned the first time she’d asked me to make a year-long goal when we enrolled in the program. Goals had always been something we created with therapists and educators, never with medical personnel. I’d forgotten about this portion of the call and was again taken aback when she asked which new goals I wanted to make.
“Goals? Hmmm, I can think of a few, but remind me what I said last time,” I replied.
To become more actively engaged in community outings
I laughed. I laughed so hard. Then I said, ‘The covid lockdown, and then the shuttering of places we’d normally go, shot down any chance of creating meaningful outings. By the time places were open again, Ronan was so out of his normal routine. He didn’t want to go anywhere or do any of the usual things he used to do. He still doesn’t some days. We try to get him interested in things, including stuff his siblings are doing like we’ve always done, but it’s been a struggle.”
When one has as many kids and as busy a schedule as we have, the expression, “There’s always something going on!” perfectly sums up our life. That expression rings through once more…and makes for some interesting (and maybe even entertaining) storytelling here.
Two weeks ago, a hornet crawled out of a floor vent in our den. Ronan’s caregiver was home with Ronan when the scary, flying beast emerged. She trapped it, God bless her, and was rightly traumatized afterwards from the frightening few minutes the hornet was in my home.
Later, while telling my husband about the incident, he said it might be time to call an exterminator. We’d seen wasps in the house when the weather had started to warm up. A friend in the area had shared that they, too, get wasps in the house – sometimes from their chimney, sometimes through an air vent. Like the friend does, I trap and kill them. I used to be a catch-and-release kinda gal. Not so much anymore. I like nature, but I never like to see that sort of nature in my house. Unable to figure out how these insects were coming in, I knew we had to do something more.
A few exterminator companies would be available to help me, but I know that their first-line of defense would sometimes be some sort of chemical concoction. I didn’t want that option in case whatever they used would have negative interactions with Ronan’s health. After speaking to the company’s representative, who completely understood my predicament (and who said she’d be living in a hotel room if she ever experienced a hornet in the house), I agreed to have their technician come over for an inspection. I’d have to wait a few days though. Their schedule and mine wouldn’t match up until after the weekend.
While I anxiously waited, Ronan’s big sister helped put screens over every floor vent in the house. It might be a temporary fix, we said, but it was one that made our adrenaline rush less.
I got up early Monday morning to make breakfast for Ronan before woke up and to be ready for the inspection. Hoping he’d sleep in since he’d had two very early morning wake ups two days in a row, Ronan decided that the very second the technician drove down our driveway would be the very best time to wake up. He didn’t come find me right away like he usually does after waking up, but waited a few minutes. I was glad for that because it gave me a few minutes to give the young tech some information about the hornet that scared us.
While the tech was telling me what he would do first, which would be a walkthrough of the house and a peek in the attic, I heard Ronan walking toward us. So as not to startle the young man, I said, “Oh, hey, there’s my son.” The young man replied, “Yes, I heard you had a son that has some medical conditions and that you’re concerned with some of the sprays used to treat bugs.” As I gave him a quick rundown of my concerns, Ronan took himself to the bathroom. Within a few seconds, I could hear that he was actually using the bathroom.
Wow, I thought, great job, Rone! All those mornings that we, or his caregiver, had guided him to the bathroom first thing in the morning is paying off.
Note: Cathy has today off. Did you notice how few stories there were about autism last month? Cathy did, last year. We've dropped off the radar in the public eye, yesterday's darling.
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By Cathy Jameson
Around this time last year, I noticed that autism had all but dropped off the news cycle. It appears to have taken a back seat again this year. No big fan of how the month of April has been blue-washed for well over a decade, I’m okay with fewer autism awareness campaigns.
Always a strong proponent for autism action, I’m not even seeing that in this month’s news stories. Like the flu, and like the measles, COVID19 has replaced illnesses, diseases, and other health conditions the world over.
Autism awareness may have disappeared from the media, but the autism epidemic still exists. Some will argue that autism, a spectrum disorder, is not an epidemic. While it’s not a disease or illness, autism, a condition that can significantly impact physical and mental health, does fit the CDC’s definition of epidemic. From their website: CDC.gov
epidemic the occurrence of more cases of disease, injury, or other health condition than expected in a given area or among a specific group of persons during a particular period. Usually, the cases are presumed to have a common cause or to be related to one another in some way
Last updated in 2020, the current rate, which has risen steadily for decades, is 1 in 54 reported cases. Even though the numbers are not a true representation, if that trend continues more will be added at the next reporting period. Based on data from years ago, and from only a handful children in only a handful of states, a more accurate rate is likely much higher. With that, I’d say that one can absolutely use the word epidemic to describe what’s happening!
Regardless of how high the statistics are, autism news is scant these days.
When I looked for an autism-specific news story last Tuesday, a few half-hearted reports of groups “lighting it up blue” could be found. But they certainly didn’t come with the pomp and circumstance previous April autism stories have had. I did notice, however, that some are pushing for autism acceptance this year, not awareness. Acceptance? I’d rather not.
Note: Unlike bread, our incredible library of posts rarely get stale. Cathy is taking a weekend holiday, so we present a post from December 2018. Enjoy.
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By Cathy Jameson
Did I tell you? He’s sleeping through the night.
Oh, that’s great!
He wakes up dry, too.
Even better!
How are his mornings? Do you get much done?
Well, after I prepare his foods and feed him, he gets just a little break. Feedings can be tricky because he’s gotten picky about some foods. After breakfast is over, it’s time for therapy.
Ahh, yes. Feedings. I remember those days. I’m sure he’ll come around.
How many hours of therapy does he need?
Actually, if he can tolerate it and won’t need to rest midday, we’re going to increase therapy hours after the new year.
That’s wonderful! What are his latest milestones? Anything finally clicking?
He’s learning to communicate his wants better, and almost staying with an activity through to completion. He’s showing more signs that bathroom skills may be the next big thing…
Like sitting on the toilet??
Wouldn’t that be a dream come true!
It would. Do you think he has the motor skills for it?
I do, but the big question is does he have the sensation for it. You know, when he’s doing something he wants to do and is really engrossed in the activity, it’s like he can’t even tell he’s soiled his diaper.
I’ve heard that before. What else? Any other self-help skills he’s close to mastering?
He’s getting there…clearing his bowl and plate from the table, tucking in the dining room chair he just sat in, helping make his bed, putting dirty laundry in the laundry room…some basic, typical skills.
I was going through some really old files that I haven't seen in a really long time and found something that I’d written that, wow, brought me way back. At the time, it still felt like I was in the early stages of understanding what sort of options we had for Ronan's education and for his medical needs. Back then, after reading an article, a website, or a book that I found useful, I’d share what I was learning with others. I’m still sharing and offering help to others today. That’s because every day is a good day to learn. Every day will also always be a good day to help someone else. So, here’s that really old file, with some new edits, for today’s post.
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Lifeline
There's a saying that goes something like this, When you know one person with autism, you know one person with autism. I’m always hoping someone will add “…and…” with more information at the end of that sentence!
The more I think of that sentence, the more questions I want to ask:
What does that mean? Why won't you complete that sentence for me?
Where can I go to get help?
Whom should I trust?
How long is this going to last?
Over the years of trying to find the right path to walk with my son’s particular issues, I’ve read many publications and webpages. I’ve read about topics such as autism, autoimmune disease, mitochondrial dysfunction, vaccine injury, communication disorders, educational therapies and biomedical interventions. When I would come across those topics, I always looked for the most current scientific news about them. I compared that news with past trends and then took time to read blogs so as to get a parents’ perspective on things. Parent perspective, I discovered, is always important to consider.
I haven’t found all the answers to help me understand everything that affected my son, Ronan, but I have gathered an incredible stack of books for my personal library. I have tons of saved webpages in my files on my computer, and have also collected several business cards of professionals whom I can call or email when I need their assistance.
With all the reading and asking that I have done to help me understand my child’s needs better, I made it a point to share that information with local families. It isn’t always easy talking about certain things, but with them I can openly share my thoughts, my worries and my findings without judgment. I wouldn’t be as brave as I am in speaking up now if not for the parents who walked before me though. These parents may not realize how much they have helped a mom like me, but they’ve taught me where to research and whom to trust. They also gave me a sneak peek into what to expect and gave tips on how to manage all of the above. Those parents have become my lifeline. Without their guidance, I would be lost. So I’ve made it a point over the years to pay it forward with telling our story. I do that with the hope that others can be aware of autism warning flags, of potential treatment options, and of finding helpful support groups and useful resources.
I wanted to catch up on the world news while eating breakfast one morning late last week. Bouncing from one news site to another, I never know what types of stories I’ll find. I hadn’t seen too much autism-specific news this past month, so I did something I don’t love to do. I typed in the word autism in the search bar.
Scrolling past the top search hits – because they read more like sponsored ads than actual news stories, I was pleasantly surprised by a few headlines. I’m usually hesitant to click on a story if I don’t recognize the news outlet because more often than not, mainstream news doesn’t feature our community as kindly as others. The story that drew me in didn’t do that. The more I read, the more I could actually relate to the parent perspective story! It wasn’t the first time that had happened, but it was encouraging to read through another family’s familiar reality.
After describing encounters while he and his son are out in public, the young father shared this advice:
Just be nice.
It’s such simple advice! In fact, it’s the only bit of advice I’d like to also share here today.
Today is May 1st. 2022’s autism awareness month, and that newer, unusual campaign, autism acceptance, ended yesterday. While autism may not have as major of a spotlight in May’s news cycles, it’s still around. Our kids don’t lose their diagnosis nor the great need for support just because the month of April ended. What a different world it would be if their stims, seizures and overloaded sensory systems could give them bit of a break when April 30th rolled around.
We, the weary parents, don’t get to stop advocating or stop looking for resources when we flip to a new calendar page either.
We keep on going.
We keep on working.
We continue to help others in similar situations, too.
It’s business as usual in our households. That’s because for many in our community, our kids have a more severe type of autism than what typically gets featured in news stories. Our kids require care 24/7. With that kind of care, comes great responsibility. Some parents have had to have louder voices to get appropriate assistance. They’ve had to fight hard to maintain educational and medical rights, too. Every family has their own unique struggles, but the families in our community will sometimes go through tougher situations, ones that won’t make it to upbeat news stories or on television series. Thankfully, some people outside of our community recognize that.
I’ve usually had the chance to create a long list of inspirational songs by the time the month of April rolls around. Whichever tune has put a pep in my step, or whichever artists remind me to fight the good fight, I jot that info down in a little notebook I keep in my car. Over the year, thought-provoking songs and artists’ names fill a few pages. To prepare this post, which is more of a covid-playlist than an autism action month playlist, I tried to recall from memory some of the songs. I couldn’t partly because I’d bought a new-to-me vehicle late last year and never put that notebook in the new car.
Something else happened, too.
Midway through the winter, I stopped listening to music. Even at home. I craved complete silence instead of my usual musical motivation. With all the crazy changes, and with how quickly life got flipped upside down, I was feeling kinda numb.
It was too much for a lot of people. The news and all the doom and gloom it brought were getting to be too much for me, so I extended that quiet time through Lent making it a point to not listen to anything, even talk radio, while I was driving.
Once Lent was over, I started to crave music again. But nothing too crazy or too loud.
There’d be time for dancing in my kitchen again, but not just yet.
Too many people were going through tough times for too long. Feeling lost, broken and under so much pressure, my heart ached hearing how tough life was for others. It was time for me to get that beat going again. It's only been a few days since turning that music back on again, but every song that flowed out of my speakers echoed something I’d heard about or experienced.
Darkness. The last two years have been covered by darkness. Thoughts, words and deeds, as well as other parts of life as we knew it, were taken over by covid. In some places in the world, its grip is still pretty tight. Travel restrictions haven't been completely lifted. Mask mandates are still being enforced. Despite the risks, that liability-free covid vaccine is still being required for some. Those running the covid show are not ready to walk away from what they started. Nor are they willing to give an inch to the rest of us. How can we find our way out of the darkness?
By not giving up - even though it feels like every odd is against you.
By keeping one foot in front of the other - even though you've tripped so many times already.
By finding one, just one, tiny positive thing to think about - even though negatives may be all about you.
I keep thinking that at some point, things have to settle back down. With all the changes the public was forced to make, including the most bizarre ones that have happened, I don't know when that'll happen. But this time of sacrificing that we've experienced has to end. Some people aren't waiting for an official end to be declared and have successfully taken a stand. They've stopped sacrificing their children's mental health, their own jobs, and their family's livelihoods in 'the name of Science'. They've taken back their rights and are living life as normally as before. I saw that building up at the beginning of 2022. I saw that happen through the recent Lenten season also.
The time of Lent is a season of repentance and reflection of Jesus’ suffering. It's a purposeful season that builds up to new life and new beginnings. As this season ends, we celebrate something. We get to celebrate in hope again! Covid didn't bring that. It didn't bring much hope at all when it was ushered in. What we got was a dangerous agenda that brought death and destruction. No wonder its grip is so tight. No wonder so many have said, "Jesus, come quickly!" when they think about how changed life is now compared to what it was just a few short years ago.
I may not always feel strong enough for a lot of what I’ve had to handle, but God’s timing on my journey here is absolutely perfect. In a moment, especially a frustrating moment, I sometimes may not realize that perfect timing right away. But blessings have a way of finding us. They did years ago when I found this community. They do even now. I never take any of the gifts my family has received, be they spiritual or otherwise, for granted. I found that to be true again when an unexpected blessing came my way last week. An unexpected phone call. That unexpected blessing. Followed by an unexpected wave of emotions. It was something to be thankful for once more.
If I had to describe it, it wasn’t just a blessing. It was also autism action in action.
I’d planned to write about autism action for this weekend already. I wanted to reshare a post I’d written back in 2014. It was inspired by people who’d helped us because they’d heard that the autism we lived wasn’t like what was being portrayed in cheery news stories. The news stories showcased only positive outcomes; they rarely – if ever, shed light on the kids who wouldn’t grow into independent adults. People who knew us knew that my son’s diagnosis paled in comparison to those featured, and they wanted to do something to help me help him. They wanted to help me help my other kids as well. The assistance wasn’t just physical assistance, like shuttling my typical children to their typical activities; it was also spiritual and emotional assistance being offered to me and my entire family.
It’s a very humbling experience to be on the receiving end of that kind of support.
This year, I’m finding that I need more support than previous years. For so long, I’d been able to be the helper for others. As the helpee I have been quick to say yes when someone asks, Hey, Cathy, do you need anything right now? “Ohmygosh, YES! I do,” I’ll say. Friends and those who personally know our story have been so very generous with us, and I don’t mean financially, although those gifts have always been a Godsend. Other gifts are ones that have promoted autism action, like when people checked in to see if Ronan is okay after they’ve heard he’s had a rough day. They check to make sure I am okay, too. They’ve asked if I’m sleeping well, if I need a meal delivered, or if they can drop off some groceries to us. Some still ask if they can pick up my typical kids from their typical activities while I tend to Ronan. He isn’t as busy as he was when he was in all sorts of therapy, but his health is still a concern.
I had forgotten about this image that I found in my writing files last week. Made by a good friend several years ago, I hadn't seen it in a long time. I hadn't read the piece that inspired my friend to make the image in a long time either. I'm glad to share it here. I had a few ideas about what to write as we began another month of April, but nothing sounded exactly right for today. That image, as simple as it is, said it all.
Hope Now.
Help Now.
Act Now.
If you've been reading my writing for any length of time, you'll recognize that hoping, helping, and acting are running themes of many of my stories about our personal experiences. Some days I veer from that norm. Even when I share what happened on a really rough day, though, or when I recall a cry-my-eyes-out memory, I try to add an element of hope.
“Mrs. Jameson,” a young girl said to me when I approached where she was playing, “When I do this (presses her shoulder), it hurts,” she shared.
“Well, don’t do that, silly goose,” I replied.
A few minutes later, a sinking feeling fell over me. It wasn’t just that her shoulder hurt; it was where she pressed on her shoulder that made me sigh a deep, heavy sigh. I didn’t know this little one too well, so I didn’t ask her why it hurt when she first mentioned it. I did have that opportunity later, though, to get the rest of the story.
“Oh, it’s because I got my flu shot yesterday,” she said.
Flu shot? Now? Why?? I wanted to ask. Since it’s none of my business, and because she was such a young child, I kept those questions to myself. I know the flu virus doesn’t care what time of year it is, but I thought it was rather late in the “flu season” to get the shot. What changed? She was not the only young person I’d recently learned had gotten it, so I tried to recall what I’d heard recently in flu shot news.
I gave up listening to the radio for Lent, so I’ve missed quite a bit of on-air news these last few weeks. I’m in the car a lot, which always provides ample opportunities for me to tune into all sorts of news and music channels. I remembered that right before I turned off the radio for 40 days, I started to hear chatter about the flu shot. “It’s not too late to talk to your doctor about getting the flu vaccine,” one of the talk radio hosts had pushed. I tend to turn the channel when the talking heads start talking about that stuff, so maybe I missed the latest flu shot roll out. Maybe I missed that the pharmaceutical companies were throwing ad dollars to the media hoping to play catch up with lost flu shot revenue. After all, covid had taken center stage and pushed the flu right off its pedestal. The flu all but disappeared last year. With the massive drop in cases being reported last year, maybe the need to promote flu shots also disappeared.
NEW YORK (AP) — February is usually the peak of flu season, with doctors’ offices and hospitals packed with suffering patients. But not this year. Flu has virtually disappeared from the U.S., with reports coming in at far lower levels than anything seen in decades.
Gone. Completely. Just like that! Too bad it didn’t last. It was nice to get a break from the constant advertising that happens each flu shot season. I didn’t miss those one-sided ads at all, but I did miss the reporting of how effective the powers that be claimed those shots were earlier this year. They’d be pretty effective! You’d be like a superhero if you got one, too.
As if orchestrated, the flu - and that money-making flu shot, came right back this year. Apparently, TV personalities and TV doctors joined in to do pharma’s bidding early on. It didn’t happen in this segment, but that TV doctor encouraged getting a covid and a flu shot at the same time. I’m not sure why he’d promote that when unbiased, long-term studies on combining those two liability-free products haven’t even had a chance to be done yet. I guess that’s part of the tactic of cheerily rolling out the vaccines hoping the public will roll up those sleeves of theirs. That aligns with the CDC’s claim that they work “…each year to increase the number of people who receive a flu vaccine and eliminate barriers to vaccination.” Like previous years, though, the vaccine effectiveness (VE) is questionable.
Waving her off, I faked a smile and then quickly turned my head. Capturing the curiosity of a stranger, my heart sank. I'd just encouraged my typical children to go ahead of us into the chapel. Wishing I'd asked one of them to stay with me, Ronan and I were now in a standoff in a parking lot. It's not the first time he'd been there. But he was making every indication that he did not want to go again.
I whispered to Ronan, “Dude, it's just a few more steps. You can do it, I know you can.”
Turning my head back toward the lady who'd come to a complete stop in her car behind us, I politely waved her off. She was still trying to decide if I needed help or not, so I faked another big smile hoping she’d take it that we were okay. At the same time, Ronan took one tiny, willing step forward. Seeing him take that step must have reassured her because she zoomed away. I wish Ronan would've zoomed into the church where his younger sisters were waiting for us. But that one step was all he ended up taking.
Frustrated, I said, “Can you please go?”
Before Ronan could make any sort of response, good or otherwise, an usher left the narthex and walked toward us. Both doors that lead into the back of the church were wide open. He had a front row seat to the struggle I was praying would end. “Hey, can I help with anything?” he very politely asked. Normally, my other son helps walk Ronan in, but he'd gone to an earlier Mass. They effortlessly walk in together. They always make it to the pew. If Ronan shows any sort of hesitation, it’s brief because Willem turns up the encouragement which always results in a happy ending.
I was not the fun sibling though.
In that parking lot, I was the mean ol' mom who only made demands, demands that Ronan had no interest in. If that wasn’t bad enough, I now had a growing audience. I sheepishly smiled at the usher and said, “Well, he doesn't seem to want to go to church today." Nodding, he asked, "What can I do?" As much as I wanted to do this alone, I said, “This is Ronan, and if you could take his hand, maybe we can walk him in together." Without hesitation, the usher did exactly that. We were just a few steps from the doorway when the woman who'd seen us in the parking lot came walking quickly toward us.
"Is he okay? Are you okay??"
I was startled by her questions. I was okay, and my kid was just being stubborn, I wanted to share. I didn't say that, of course. The last thing I wanted to do was make it sound like Ronan was being obstinate. If he was typically developing, I would call his refusal to go in the building an obstinate behavior. But the developmental delays, the communication struggles, and the sensory overload is not obstinate at all.
We live in a neighborhood with several young active duty military families. Some of the guys will exercise and run through the streets with their military gear on – either wearing their boots, or carrying a rucksack, or while wearing their bullet-proof vest. We saw a young man running with his vest on just last week. I could’ve yelled out a Marine Corps brat OORAH to him, but I said a little prayer for him instead.
That guy may just be some guy who likes to push himself, but he may also be gearing up to go overseas. Wearing the vest, which weighs about 20-25 pounds, while running may help him get ready for the physical rigors he could soon encounter. If he is deploying and if he knows where he’s headed, bravo to him for prepping now. He’ll know what to pack and what to expect wherever he lands. After seeing him, and after watching a re-released documentary last week, I’ve been thinking about how ready – and how not physically ready – I’d be if I’d unexpectedly have to carry some extra weight.
The documentary I just watched is called The Last Days, a film about Hungarian Jews who lived during the Final Solution. Always fascinated by other people’s survival stories, I am so grateful to learn about their past. I’m even more fascinated that some people, who’ve lived through frightening times, are still alive today and continue to talk about what they witnessed. The stories presented in The Last Days had me listening more intently than other documentaries I’ve watched about the war. One of the women shared that they knew trouble would soon be crossing into their homeland. When the troops did make it to her town, she was permitted to grab 25 kilos of personal belongings.
They were told they could take…all your valuables…this after being turned in by neighbors.
They were permitted…25 kilos…and had just 30 minutes to pack up.
What do you take?
What is 25 kilos?
How much is 25 kilos…do you take your plates…dishes…your pillows?
God forbid we ever have to gather our belongings and leave as quickly, and for as long, as these young Jewish families had to. I’ve never thought about having to do that today, but if we ever did, I know what I’d need to bring with us. While I could get by with the bare minimum, Ronan could not. We’d have to bring more than 25 kilos, or 55 pounds, of his items:
The first thing I’d grab is small every-day bag. That weighs 3.5 pounds.
Let me preface today’s post saying that I am absolutely thrilled that Covid has seemingly been whisked away. Pick the positive adjective - thrilled…ecstatic…grateful…relieved - and that’s me. Really! So why am I hunting and pecking for any and every bit of news about the disappearance of Covid, mask and vaccine mandates? Why am I questioning the statistics that were a constant for two years? Why do I care that restrictions are no longer?
Something doesn’t add up.
And I want to know why.
I guess it comes down to being curious.
The Curious Cat, that’s me. I’m especially curious when those in charge of the official Covid narrative, who shoved their Covid authority down our throats for two very long, arduous, emotionally/psychologically/physically draining years, have turned an about face. Conspiracy theorists – and conspiracy realists – have their own ideas about why that’s happened.
Despite that, schools, government agencies, and local businesses rather quickly changed their tune and lifted restrictions. Could it be because the parents said no more? Could it be because the Canadian truckers took a stand? Could it be because those midterms are looming? Could it be related to the timing of the crisis overseas? Maybe it’s because they’ve changed metrics yet again. I haven’t found a solid reason yet, but all of those, including the people orchestrating some of those events, are worth looking into.
I have a handwritten note in a folder that goes with me to every doctor’s appointment I make for my son. The paper isn’t that old. Well, in terms of today’s technological advances, it may be - it’s from a dot-matrix printer we used to own in the late 1990s. On it are the milestones my son was making. Those weren’t just memories I wanted to preserve; they were my guide to knowing that my son was, for a time, on time with his development.
Looking at the paper now, it’s clear that Ronan was not hitting some childhood milestones. I knew that when I was jotting those notes down, not just because of later visits with the pediatrician, but because of my college studies. I majored in Human Development and Family Studies. My focus was child development, specifically early child development from birth to nursery school. I used that information about milestones for research papers as I entered my 20s. I cited it frequently after college and later into my 30s.
My teaching career had me engaged with children of all ages and with typical abilities. The very few students I encountered with special needs in the classroom tugged at my heart. While I couldn’t compare my life with them, nor their parents, I had basic knowledge of what support they needed to be successful students. Both in and out of college, I will be forever grateful for the information I learned and for the experiences I had. That helped me to know that I needed to leap to action as a young mother sooner rather than later.
The nagging feelings I started having about my own child’s growth and development proved helpful. Of course, the nagging part wasn’t so pleasant, but knowing that something wasn’t right gave me a reason to talk with our doctor. I rarely had to make an appointment for my first child, beyond the scheduled well-child visits, but I knew the option existed. When Ronan didn’t hit a major milestone, walking, I’d planned to make a call about his development by the end of that week. Luckily, I didn’t need to make that cold call. I ran into our doctor at the grocery store before my self-imposed deadline.
We lived in a small, rural town at the time and would see familiar faces wherever we went. One evening, while waiting in line to pay for my groceries, I looked up and saw the pediatrician. She had gotten in line behind us and said hello. Not wanting to take advantage of her personal time, I told her she was on my list of people to call that week. She quizzically said, “Oh? Is everything okay?” Fully taking advantage of her piqued interest, I continued, “Well, I think something’s wrong. Ronan’s still not walking.” Ronan had crawled on time and began to pull up on furniture on time, but he was still not able to stand completely on his own. I knew about late walkers, my daughter was a tad late to walk, but he was almost 16 months old. To me, that was concerning. Ronan was getting a little old for not being able to walk according to the major milestone list I’d studied years ago in school.
This is a Best of post from April, 2017. Cathy is enjoying a day off.
By Cathy Jameson
I know I’ve mentioned it here before, but I am really proud of my kids. They are not perfect. Hardly. But they are a lot of fun and pretty creative, too. I love to see their creations and am in awe of how quickly and easily it is for them to think-outside-the-box when they play. I encourage them always to think outside the box, not just when they play or when they’re trying to solve an academic problem, but for life in general.
I’m not sure what inspired them to play a game they call Bind and Go Seek, but it is absolutely one of the best games my children love to play. It’s easy to play and could fill a whole morning or afternoon. What are the rules? Have fun, and be careful. How do you play? Imagine 3 of Ronan’s siblings giggling with glee as they tiptoe, scamper, and chase each other through the house. Then, imagine the other sibling trying to keep up with the others while blindfolded. So far, knock on wood, no one has been injured during a game. They’ve grown closer to each other, albeit not permanently, but each game evokes stronger sibling ties as well as hours’ worth of laughter.
One night, while watching the blindfolded sibling search for the others, I couldn’t help but think how helpless that child was. Blind. Unable to use clues in their environment they normally rely on, they had to rely on instinct and their senses. Oddly, they didn’t think they were helpless at all. Rather, for that night’s seeker, it was the opposite! It was thrilling, exhilarating, and exciting. With no light, with no sense of direction, and with nothing but her instincts as her guide, she confidently prepared to search for the others.
First, the countdown.
Then, the bellowing of a friendly warning, “Ready or not, here I come!”
Thinking about how many obstacles stood between her and her siblings, I cringed. That didn’t stop that brave, little lady. Gleefully with arms outstretched, and with a pep in her step, she set out to tag one of her sisters or her brother.
For some time, Ronan’s younger brother has surpassed him in every phase of growth and development. Long ago, there was a time when my sons were neck-in-neck both physically and cognitively. Those years were wonderful years. Then, the boys shared the same clothing, had similar tastes in food, shared playtime activities and also enjoyed the same television shows. That’s not the way how life is now and hasn’t been for many years.
As my boys aged, the gap in their growth and development widened.
Cognitively, Ronan’s stuck in a much younger phase. Physically, he’s a good 10 inches shorter than his brother Willem. While not as tall as Willem, his sisters tower, or will soon tower, over Ronan. Each of them has responded in their own unique way to the differences in growth and also to the very different life experiences they have had because of their brother. Most of the experiences have been positive, for which we are all grateful. Some, like for any family – typical or one that has a special needs family member, can also be tough experiences. While I mostly paint a pretty picture of us, and especially of the siblings, I readily admit that not every day has been an easy one. If asked, my children would admit that, too.
And Ronan really can be a rotten pickle (an affection family term for someone who can annoy the heck out of a growing impatient sibling who’s trying very hard to not lose their patience)!
Sibling rivalry doesn’t go away when autism enters the family; it just takes on a different form. For Ronan to knowingly push our buttons because he can, takes quite the skill. I don’t condone it, but secretly I love it. Where he can’t verbalize typical sibling antics, he sure can do little things that get them a little peeved. When I see that, I’m quick to correct it even though I am curious about what Ronan will think of to do next. People should be polite to others, including Ronan, and not annoy someone just because they’re capable of doing so.
I’ve stayed active watching vaccine bills locally and across the country for many years now, voicing my concerns when I can. I’m borrowing my own words that I shared 2 years ago:
I never used to pay attention to politics when I was younger. I knew the basics and recognized who sat in the top government positions, but that was about it. Now, I read and watch everything I can about it. From what’s happening on the state level all the way through to the federal level, I scour the news looking at what my and other representatives across the country are talking about. When vaccines are on the docket, I pay even more attention. What happens in one state, could very well happen in another. (From All Hands on Deck for Vaccine Bills Across the USA, 1 March 2020)
That post came to mind when I got an alert about some bills that were soon-to-be heard in my state. With state legislative in session now, I’ll continue to look at what’s on the docket.
Curious about your state’s calendar? This pdf lists specific dates of regular sessions and also special sessions. Curious about what your state recorded last session? StateScan Roundup recaps some of who did what and when. Want to get a leg up on certain bills? This group offers alerts specific to whatever causes you wish to track. Want to see what’s being watched by the National Vaccine Information Center (NVIC) Advocacy Team, a group that keeps an eye on all state bills related to vaccines? Click this link to find the latest information and action alerts. (Log in is free but required to access more detailed information on their portal.) Want to know who represents you? Click your home state’s abbreviation on this map (or type the state name in the box below that map) to see who’s sitting in office now.
I used to feel so intimidated by those working in legislation. Heck, I was even intimidated by the legislative process itself! Schoolhouse Rock made it look so easy, but I shied away from it as much as possible.
Writing bills, lobbying, voting, enacting – those were things other people did, not me. Maybe years ago it was easier. But shady doings protecting liability-free medical products have become a big part of politics. How could I, a simple housewife and mother, have any sort of power to make any sort of change? Could my efforts really help? Maybe. I really wouldn’t know unless I tried to make a difference.
I don’t know much about marketing, but I do know that fancy words in ads can help make a bigger sale. I thought about that when I saw a phrase I didn’t recognize: The Going Out Edit. I knew it had something to do with fashion, maybe even high fashion. But that was it. Whatever it was included a dollar sign.
Sometimes the new teen/young adult lingo goes right over my head. In case one of my kids began to use the phrase, I wanted to check it out and see what it meant. Sure enough, it's the things you wear, the accessories you bring, or the stuff you add on to your outfit. From Cotton:On
The Going Out Edit
A calendar full of social plans, parties and reasons to dress up again. Think little black dresses, tops, cute crops and pants that pair perfectly with your heels. Jeans? Absolutely. Whether you’re going out with the girls, hitting the dancefloor or after-work drinks, these new outfits were made to be seen in. Bodycon dress? A statement co-ord set? A halter top and jeans for that classic ‘jeans and a nice top’ look? Real big vibes. Refresh your wardrobe, grab your clutch—we’re going out.
I'm not into fashion at all these days. Actually, I never really have been. While shopping before my kids were born, if a dress, shirt or pair of pants fit me, and if the price was right, I'd get it. I still buy clothes that way now, including when I'm at thrift stores (which is my favorite place to shop). I was looking at an online retail site for a few things when I saw a section that had that The Going Out Edit title. Before I saw the photo under it, I immediately thought of Ronan. Could edit mean what we bring along with us when we leave the house? I wondered. We just call that stuff. "Get your stuff, kids. Bring Ronan's, too," is what I yell as we're trying to get out the door on our way out.
That's exactly what I said when we left the house last Saturday.
One by one, the kids pig piled into the car. Dressed up that late afternoon because after a haircut for Ronan's little brother, we'd be heading to Mass. The girls were in dresses and wore nice necklaces. Their purses “completed” the outfit. Their brothers were in their khaki pants and had nice shirts on. I was wearing one of my "mom" outfits. As much as I'd love to dress up for church, if Ronan is coming with us, I need to wear pants and flats. Too many times, when he was much younger, I learned that I needed to wear sensible clothing to places he may not want to stay. Carrying him, sometimes by piggyback, while wearing a dress can be difficult. It can also be embarrassing.
We always hope he'll want to stay wherever we go, but it's easier to 'exit stage left' in clothes that are comfortable.
What's stopping one of the loudest voices from the freedom to live? Who's keeping him from going next door and playing chess? And why can't he take pictures? I know things are not as great as they used to be there, but are cameras and photographs banned in New York City now also?
Those were my first thoughts when I read that quote from Howard Stern. I don't usually think about him, but I really did stop and think about Stern and what a predicament he must be in to not feel like he has any freedom. My next thoughts about him and that quote included more questions.
Covid restrictions are still pretty intense in some localities. But Stern is a rule breaker kind of guy. So why is he going along with the most tyrannical of rules? He's a headline grabbing sort of celebrity. So why hasn't he used his platform to help get rid of these really restrictive rules? Why doesn't Stern fight for what he wants — freedom to live — and kick the greedy government and its mandates to the curb? He's a cross-the-line sort of person. In fact, he's one of the most famous cross-the-line sorts of persons who ever existed!
But what you allow is what will continue.
Quarantine and the massive shutdowns that took place in early 2020 did a number on people. After reading the article that featured Stern’s quote above, I can only imagine they had a negative impact on Stern as well. The decision to shutter people and to limit daily human contact affected kids, adults, and even pets. Depression, suicide and addiction rates increased while availability of therapists and medical personnel, trained to address those conditions, decreased. Over time people raised their concerns about how difficult having to quarantine can be, including other celebrities.
Many people, both famous and not, want Covid to end so they can get some freedoms back. Some think freedom, and what they remember as 'normal life' will return after Covid 'runs its course'. Others insist that a vaccine is the only answer to make the madness stop. With how readily available they are, Stern brought vaccines up, too. He had this to say about people who are hesitant about getting experimental vaccines or who are decidedly against them (pardon the language):
"...people who refuse to get Covid vaccinated are 'imbeciles' who should 'go f*uck yourself."
Greeted by the most peaceful wintry scene last Monday morning, our Christmas vacation was now extended at least one more day. With all five kids home, including my oldest who was home from college, my Mommy heart was happy. My heart would go through a range of emotions over the next few days...
"We have a 19 year old who needs to be next. I'm sending back Jameson, Ronan Jameson...he's just had a seizure..."
"Mom, we're next," Ronan's younger sister said, as we gathered our belongings.
Thank God, I thought.
Ronan had been in and out of sleep. Tremoring. Coughing. Heart racing. Feverish. Trying to remain calm in the midst of a storm racking his now weakened body, he couldn’t do much. At some points, he could barely lift his head. The only time Ronan was his usual self in those early morning hours was during the exam when he was triaged. A pro at sitting still when nurses take his temperature, blood pressure, and check his heart rate, I was grateful for his cooperation. The nasal swab, based on the symptoms he presented with, was another story. It took three people, me included, to convince Ronan to hold still and stay still for that invasive part of the exam.
Knowing it could be a bit of a wait to be called back, I didn't expect it to be an hours' long wait. When the doctor paged the nurses about Ronan, I think we were waiting 4 hours at that point. Those 4 hours don't include the harrowing 2 hours prior to arriving. Prior to our arrival, another kind of storm brewed, one that dumped 12" of snow in our area. We'd already lost power before waking up the day of the storm, and that was with only a few inches of snow on the ground at that point.
More snow would come.
So would downed trees and power lines.
We'd learned about the condition of the roads but it would take seeing them to believe how bad they were. Ronan's big sister experienced them firsthand. She had reported to work before any of the roads saw a flake of snow at 4am Monday morning. Normally a 25-minute drive, it took her 5 hours to get home. Even with 4-wheel drive, it would be a treacherous journey for Fiona. Snapped trees, thick snow, unplowed streets and icy patches in places that had been cleared peppered her drive back. When she needed it, people helped her get out of the places her car had gotten stuck. When it was safe, she helped clear the road of the jagged limbs blocking other people's paths. Stranger helping stranger, I was comforted knowing others were quickly helping my daughter get home. Once safely in our neighborhood, she could only get so far though.
A utility pole on the street just behind ours, split in half, leaned and landed on the sagging power lines of the other side of the road. Neighbors had been using chainsaws to cut trees blocking several intersections, but they knew not to touch the utility poles. In a line of cars waiting to get around that area, my daughter sat in her cold, wet work clothes hoping it would only be a few more minutes before she was on our street. She was so close to us! But she had to turn around and was rerouted again.
Forced to leave her car at a park, she walked the last mile home around more downed trees and through people's backyards in a foot of freshly fallen snow.
While we waited for her safe arrival, my other kids took to the hills in our neighborhood to go sledding. I love to see them play outside! So happy, so full of energy, I smile big smiles when they get suited up for that kind of fun.
As they got ready to play, I got Ronan settled on the couch with his fully-charged iPad so I could begin shoveling the driveway. Normally something my husband does, it would be up to me to clear it since he was out of town. I always offer anyway when he's home because it's a good, little workout for me. Knowing I'd do the bulk of the work myself, I needed to conserve my energy. The snow was heavy, and there was just so much of it. This time, I would have to shovel part of the street also. The one plow that went down our street one time during the early part of the storm managed to pack extra snow along the entire length of our 4WD truck that was parked on the street. Somehow, it dumped snow in front of it also.
It’s not really a New Year’s Resolution. But if I had to share one bit of advice as we begin 2022, I’d share that we must always be ever vigilant.
I have shared some of the complications my son has had post-vaccination, including experiencing seizures. Other complications, ones that could have also been avoided, have crept up over the years. Those complications were discovered while filling prescriptions or while battling insurance companies.
2009
Today I’m a medical billing detective. Looking for needles in the haystack with receipts EOBs, insurance claims and wondering why money doesn't add up in our favor--someone's getting the Wrath of Cath in a phone call tomorrow. It's always fun to do on a Friday. Grrr…
I never knew how thorough I had to be when it came to reading medical records, filing insurance claims and filling prescriptions until bad things happened. Sometimes, I’d be able to thwart an issue before Ronan would be affected by it.
Other times, I could not.
2009 – Early June
Ugh. Ronan is having more strange eye and head activity. I believe he had a seizure right after I put his socks on. Legs flinched really fast and the rest of him was going so slowly. I called the neuro nurse again. We need to switch to the brand name drug to see if it is the generic drug causing the activity. Get this though…we have to do a trial to prove the meds help so that we can then go back to insurance and demand they pay for the brand name at the generic price. Our kids are guinea pigs to save a couple of bucks. I'm so scared. I'm keeping Ronan home from school today. He looks like a train wreck with his eyes all dark. Say some prayers. I'm hoping he takes a nap so that he can sleep some of this stuff off.
2009 – Late June
Just tucked Ronan in for his nap. Breakthrough seizures still trying to get through. He's all snuggled under his yummy blankets. Gave him a kiss and said, "Mommy loves you." Ronan signed, "yes yes yes yes yes yes yes" with the biggest grin.
2009 – July
Ronan's meds are bringing on more seizure or pre-seizure activity; we need to go back on the name brand and get insurance to cover it with generic pricing since breakthrough seizures are still happening. It is awful that a kid has to prove to the insurance that he needs the better drug. I hate the medical industry.
When a series of very unfortunate events brought a problem to light, like those breakthrough seizures, I would document as much as I could about what I was seeing. I’d date stamp the issue, keep a log of whom I spoke to and record what could (or couldn’t) be resolved. By the end of that summer, with the help of a young pediatric neurologist and the owner of the small pharmacy we’d been using, the seizures subsided. It shouldn’t have taken a fight, but getting insurance to approve and cover the better prescription turned into a battle.
2009 – Late Summer
Breakthrough seizures + generic drugs = whoopsie. Okay, now we (the insurance company) will pay for the brand drug that actually works to prevent the seizure. Grrrrrrr.....
We revisited breakthrough seizures a few years later. That time, it was from a technical error.
2013 – Late Autumn
The Keppra we've been getting since August has been the generic. I should’ve known. :( Ronan gets seizures on the generic. I know we asked for name brand.When we needed a new script, it obviously didn't get transferred to the new supplier when it got switched to mail order. I’m on the phone with them right now. :( So mad and sad and feeling like poop for watching Ronan have seizures.
Getting insurance to approve and cover new prescriptions takes time.
I never jumped on the bandwagon to make vision boards or do any sort of journaling. Those are creative avenues people have used to focus on their goals and dreams. To me, it seemed like extra work. I have enough work to do on a day-to-day basis trying to keep up with my kids. Don’t get me wrong, I do dream and I do have some great goals. I’ll talk about them and write them down, but I don’t have a separate book or wall space where I display those. I love that others have the time and creativity to keep up with those activities. I love that they will come up with new goals and dreams, oftentimes using January 1st as the day to set or restart something. When I read somewhere that some people choose a word to focus on when the New Year begins, I thought that might be more my speed.
Pick just one word?
That’s easy!
Tired. J
I don’t think the goal of that activity is to pick a word that drags you down, though. The word is meant to inspire throughout the year. Even though I can get super tired on some of our busiest days, I don’t need any visual reminders that I am. The goal of picking the word is meant to be something you strive to achieve. It’s supposed to be an inspiration and maybe a guide for you if you’ve fallen off a path you’d set out to travel. Picking just one word may be difficult, so some people have set up word generators on their websites that will randomly chose a word for you. Since I’ve never done this before, while the kids were all sleeping in on New Year’s Day I thought I’d give it a whirl.
Wondering how random these random-word generator things could be, I tried a different one. This time, the word was offered after I answered several questions. No question was too personal, but each of them did have me reflect on life. Life’s been…a lot. It’s been difficult. It’s been exhausting. But, it’s also been filled with blessings, extra family time, and some moments of peace. Another Christian-based website, I liked this word that was generated for me also!
The kids give me a hard time when I take a photo when we’re at church. MOM, it's not allowed. MOM, you should be paying attention. MOM, you know you’d be mad at us if we did that. They liken it to a mortal sin (it’s not). They tell me it’s distracting (but I do it so stealthily). They tell me I should wait ‘til later (but then the moment is gone). So I snap photos when I see something that needs to be more than just a memory. I did that on Christmas Eve when Ronan did more than just go with us to the Vigil Mass.
I had to.
Not only did Ronan walk into the little chapel by himself (just walking in is a feat), not only did he sit without fussing (it can take some coaxing to get to the pew and then stay in the pew), but he was showing interest in what was going on–without any prompting from any of us!.
For many years, I’ve shared that we’ve had to split up for Mass. Ronan just can’t handle it. So that the rest of us can still attend, my husband will go to the early one, and I’ll go to the later one. None of us likes that set up, so every few months we try, try again to bring Ronan to the church. Since the end of September, Ronan’s been able to join us every few Sundays (or Saturdays) once again. Depending on which church we go to, and also what time we go, he is finding success in joining us. We don’t know if it’ll work until we go back each weekend, but it's been an exciting part of our weekends to have Ronan right there with us at church.
I was really hoping that with all of the recent practice, and with the on-going encouragement from the siblings, that we could all go to Christmas Mass.
Could he handle one that might be a bit longer than a regular Mass? Could he handle the lateness of the time of the one we picked (9pm)? Could he sit through the whole thing, or would he and I be back in the car even before the entrance song began as happened last weekend? Christmas is my favorite holiday. Christmas Mass is the most important Mass of the year for me. I had my heart set on our family, plus extended family who were visiting, going together instead of being forced to split up.
Before we left the house, we’d told Ronan the plan. He seemed agreeable. Then we packed his favorite book and picture. But I’d forgotten those in the car. Things could’ve ended poorly without those comfort objects. But they didn’t. When I thought he might decide 12 minutes in was plenty (out of a typical 60 minute Mass), he surprised us. He stayed! And he started to follow along. Ronan even gently held my hand.
That feeling, when your non-speaking, super sensory, severely delayed adult child with autism reaches for you and holds your hand in his - what an amazing feeling!
The rest of the time Ronan was with us was absolutely perfect. He didn’t sit, stand and kneel with us, but he sat ever so patiently waiting and listening.
I keep getting it wrong, so I keep asking my daughter. “What was the name of the thing? The thing you did for Literature class?”
“It was the Chain of Regrets," she tells me for the fifteenth time this week.
“Oh, yes. Thanks. I keep forgetting,” I sheepishly reply. Having never heard of that phrase, I learned that it came from a lesson her Literature teacher was presenting while reading a book by Charles Dickens. I trudged through only one Dickens’ book as a young teen, Oliver Twist, but was familiar with the story my daughter was reading for class. They’ve acted out scenes of A Christmas Carol, even wearing a large paper chain to bring the story alive.
“You are fettered," said Scrooge, trembling. "Tell me why?"
"I wear the chain I forged in life," replied the Ghost. "I made it link by link, and yard by yard; I girded it on of my own free will, and of my own free will I wore it.”
Link by link, and yard by yard. Oof. What a heavy weight to bear.
I could probably drop some of the heavy weight I’m carrying around. I have a lot going on, not just because of the time of year, but because of juggling life in general. Being mom to many makes life super interesting and super busy. With the Christmas season about to begin, I’m in overdrive. I'd promised to do a better job of keeping our focus on Advent this year, but the Advent season has been a blur. I hate that I’ve rushed through it and even skipped over parts of it. If I’m counting them, that’s probably Regret #257.
Regrets.
I think we all have them: Not taking an opportunity. Ignoring a nagging feeling. Walking away from something we later discover would've been a blessing.
