By Cathy Jameson

I took 18 years off from work to raise my children.  I wouldn’t say that it was a break in the sense that I was taking time off from a job to get away from it or to relax for a bit.  I was fulfilling a different vocation during that time.  I had always thought about going back to a paying job when the kids were a bit older, but I felt a much stronger calling to stay home long past when other women might return to work.  While home with my kids, I was advocating, homeschooling, and keeping up with my typical children’s activities.  For my son with special needs, I was learning about long-lasting side effects, managing medications, coordinating therapies, and adjusting life when life needed to be adjusted.

A few years ago, I got a text about a job opening at a school.  I laughed.  Go back to teaching?  It was a dream of mine to do that, but now?  Ha!  Like I could go back to work, I thought.  My husband still traveled quite a bit for his job, Ronan’s needs were still pretty great, and my other kids’ afterschool and sports schedules kept me pretty busy.  I longed to use my brain in a different capacity again, but the very thought of being back in the classroom seemed overwhelming.  My friend texted more info and asked me to think it over.  Could I begin to juggle work and the intense demands life placed on me?  It was a part-time assistant position, and because the boss knew of my family’s unique needs, I would be offered some flexibility if hired.  They said that family – and especially Ronan, would come first, but I’d need to be available 20 hours a week.  From one hour to the next, nothing about our life at the time was consistent, but my husband and I went to task with this unexpected offer. 

We talked it over.

We played every scenario in our heads.

We wrote down all the what ifs.

We went back and forth with the pros and the cons.

It would be a huge adjustment for all of us if I started to work outside our home.  Ironically, though, only a few days prior had I shared with my husband that finances were getting tight.  When big problems feel like they are getting bigger, I also shared my worries with God. Lord, I shared, I need You to step in because I don’t know how we’re going to manage things right now.  While dropping the kids off at school later, I looked up toward the heavens and said, “God, I don’t know if our budget will cover everything.  It looks like we are going to be short this month.  I have moved money from one account to the next, cut costs wherever I could.  We need this much monthly to make ends meet.  Please help.”

When I got more information about the job offer, my pay, with benefits, would be the exact amount I’d asked God to help us with.  Down to the penny, it was the exact amount!!  I had told my husband that if every door opened – without us forcing any to open, I would consider that as a good sign for me and for us as a family.  I felt that proverbial door swing wide open when I signed my contract. 

That was six years ago.  I’m working more full-time now thanks to great support from the kids, my husband, and by being blessed with consistently kind and compassionate caregivers who work with Ronan.  Because of all of that, I also had the chance to take a class again.  I knew that would be challenging – not just the class itself but being back in studying mode.  That part of my brain craved the chance to learn in that setting again, but it has been a very, very long time since I sat in a college-level class.  Last semester, I proved to myself that I could handle the coursework, my job, and my role as wife and mother.  That had me looking at other educational opportunities – ones that won’t just benefit me but can benefit those I serve.  In looking for scholarships for my next endeavor, which will be a M.Ed. in Special Education, I stumbled across a word I had never seen – returnship.

It sounded silly.

It sounded made up.

It sounded awkward, too.

It may not be a word in my dictionary, but it’s a concept that also sounded empowering to those who are about to re-enter the workforce like I did after a very long stretch of time. 

When the kids were much younger and I dreamed of going back to work, I kicked around the idea of going into the medical field.  I wondered way back then about returning to school also – either in medicine or to be a therapist (as an OT or PT).  I had also considered one day looking at advocating professionally.  I’ve advocated for my son for two decades, but none of that work ever resulted in a paycheck.  Even though I had no training in it prior to his birth, I work my hardest to get things for Ronan.  If ever I chose to switch careers from education to being a paid advocate I would look at this returnship idea and for opportunities to be mentored.  Who better to ask for help?  It’s those who are steps ahead of me that have helped me the most. 

How about you?  When your child got sick or was diagnosed, did you have to leave your paying job?  Were you able to go back to work?  Did you stay in your original field or did another opportunity pop up?  I’m doing okay where I am, and I’m excited to pursue the next steps in the field that I’ve been most comfortable and happy.  Others have shared that my knowledge has helped them and their children.  I joke that I’d do it for free, but I am so grateful to have the time, the opportunity, and the support – from family and from those consistently kind and compassionate caregivers, to continue to do what I get to do when I’m at work.

Cathy Jameson is a Contributing Editor for Age of Autism.

By Cathy Jameson

I made a list for the kids about a week before we left.  A week would be plenty of time to cleanbedrooms and bathrooms, get laundry done, and pack for our trip.  We’d be heading to the end of the earth, I told them.  Our weather at home was mild at the time, but I asked them to make sure to bring winter gear.  If it wasn’t terribly cold, it would definitely be windy where we were going.

One by one, the kids looked at the list.  Easily I could’ve taken a photo and texted it to them.  I like to be able to cross things off, though, as I get ready.  Years ago, I’d be the one packing their bags.  Only once or twice have I regretted not packing for them.  Once at our destination, I’d discover that one or two of them had forgotten an important item I asked them to bring – like a bathing suit for the beach, or a nice pair of shoes for Mass.  Giving them more responsibilities and chores as they aged gave them the opportunity to learn how to be organized at home and while away from home.  This time, I didn’t doubt their capabilities as we prepped for our latest trip.  I was impressed with Ronan’s brother when he said he even saved a little room in his suitcase – for the gifts he was going to give (and for ones he might receive) and for whatever he hoped to find at the thrift stores the kids planned to visit.

When we were all packed and ready to go, we headed out to the west coast.  For big trips with all of us, I try to give us plenty of time to plan and get to the airport and to our final destination.  One mistake I made this year was waiting a week too long to buy our tickets. I’ve been able to get us some incredible deals for cross-country trips but not for this one. 
Besides paying a little more than usual for our flight, we paid much more than usual for the rental car.  The increased rental cost was partly because I forgot to reserve a car back in October when I finally bought the tickets. 

The other reason it was more costly was because we have to get the largest car any rental company has because all 7 of us (and our luggage) were traveling.  With how close to our departure date it was getting, vehicles were not just spendy – they were scarce.  My husband could find a minivan for us, so he opted for a Ford Transit that seated 12. 

I sometimes call us Team Jameson, and riding out of the city with all of our gear would’ve had us looking like an organized sports team. 

The day we left had us arriving at the airport very early.  Like for other trips we’ve taken, getting Ronan checked in as a passenger with special needs was easy.  He got an escort in the wheelchair that we request for him, which helps us bypass long lines at the gate and through security.  We got separated at security, though, because they would only allow 2 other passengers to accompany him.  That was a little nerve wracking, but we chalked that up to part of the adventure and found each other later at the gate. 

No matter what kind of trip we take, either a road trip or catching a flight, I create a separate list for Ronan’s things and bring separate bags for his items.  I wouldn’t realize it until minutes before we boarded, but I accidently booked separate seating on the flight for Ronan. 

Actually, it was separate seating for all of us!

Join us in wishing Ronan Jameson a very happy 22nd birthday!

By Cathy Jameson

I was hoping to go into work early on Thursday last week.  I wanted to finish a project and take care of something that had popped up the day before. With how busy my day gets, going in early would be a gift.  Having my older kids home from college last week was an even bigger gift.  I've been able to stay at work longer and go in earlier with them home on their Christmas break.  Our caregiver gave up a few of her hours so that they can clock in more, which has been a very generous gift to them.  It's been so nice to have the house full of helpful siblings again!

I'm sure the kids thought they'd get to sleep in a bit now that their classes were over, but Ronan decided to get up at 3am three days in a row.  I got tons done before I left the house for work, but those early wake ups made for extra-long days for him and for me.  By Thursday, Ronan settled down and woke up at his more normal 9:30am time. I wouldn't know until Friday that as his energy level decreased, his temperature would rise.  I had a tiny feeling that something was off for him on Thursday when I left for the day but wouldn't be able to confirm my suspicions until Friday when he spiked a fever.  The kids know how to handle lots of things, including when Ronan is sick. But I don't like to leave that in their hands.  They always assure me that they - and Ronan will be okay.  With their confidence in mind, I tiptoed out Thursday morning.  

I didn't get too far.  My front windshield needed to be cleared before I could drive away.  

The weather was like a yo-yo all of last week, and dipped back to winter temps.  While I heated up the car, I worked on defrosting the windshield.  The longer I waited for it to clear I realized that it wasn't really that frosty.  What needed to be cleared was on the inside.  It finally started to clear.  Readjusting the dials once more, I headed down the street.  It's usually all clear by the time I get to the first stop sign.  But that day, one large section on the passenger side stayed foggy longer no matter what I did.  I could see well through my side but couldn't see well from the other side of the windshield.  That had me slowing down and ultimately stopping.  Come on, I thought.  I finally have a few extra minutes to take care of something important, and I'm unexpectedly stopped in my tracks. 

I pulled over and waited on the side of the road.  No one was behind me, so I didn't feel the need to rush. 

One minute.

Two minutes.

Still, no one behind me. 

Almost cleared.

And, go. 

I rolled back on the road and approached the next stop sign.  Even though the windshield was completely cleared, I sat at the intersection longer than I needed to.  It's not because the road I was turning onto is on a curve, and I needed to make sure that no one was coming around the bend.  No one was coming.  I stopped longer because leaving the house that morning had me thinking back to when things weren't so complicated.  I wasn't expecting to have a rush of memories, but the last few minutes had me thinking back to the early 2000s.  I was prepared for Ronan when he arrived 22 years and a day ago.  I was ready to be his mommy and to provide everything his tiny body needed.  I was willing to go through the aches and pains of childbirth and also parenting.  I was overjoyed to watch our little family grow!  

Those were such blissful moments, and absolutely nothing back then prepared me for what lay ahead of us.  

That foggy window that morning kept me from seeing what was clearly in front of me.  Not being able to see kept me from going where I needed to go.  It sounds silly, but I compared it to how our expectations for Ronan’s life abruptly changed.  I didn't expect to need constant caregivers or to rearrange everyone’s schedules to accommodate him, like I do almost weekly.  I didn't expect to have to learn all that I have learned and had to handle, like being on hold for over five hours with the disability office last week to ask them one simple question.  I didn't expect to lose trust in people I used to revere, like some of Ronan's early medical providers who contributed to Ronan's ill health that led us down a darkened path.  

I know that expectations can change during many seasons of life, but all these years later, I'm sometimes still not prepared for what else is to come.  Take this year’s events.  Ronan's bounced back from a few terrible months of medical problems.  Even though I can see that things are much better for him now, the next round of unknowns keeps me feeling a tad uneasy.  

Once I got to work, I tackled the project and took care of other important tasks.  The kids kept Ronan happy and safe like they said they would when I was out of the house longer than usual.  Ronan didn't seem phased when I came home later.  While he may not be able to say, 'Mom!! I just love that the kids are home,' he shows us with his amazing smile that he was chuffed to bits.  

The smile, the squeals, the peals of laughter, and the shenanigans (happily, there are a few of those) helped push my doubts and my frustrations away.  

Like the fever that spiked and went away, those frustrations I feel are temporary.  I make sure of that.  Because to hold onto those and the suffering that comes with them will fog up my thoughts.  I don't entirely know what Ronan's future holds - for him or for us, but I do know that he's clearly made an impact.  On me, on my little family, and in our community here and beyond.  He's worth the little bit of worry and all of the extra help he needs.  I'm grateful for him nowand for every blissful moment we will hopefully witness in his future.  

Happy birthday, Ronan.  You are one of the greatest blessings in my life!

Cathy Jameson is a Contributing Editor for Age of Autism.

By Cathy Jameson

My kids decorated the house for Christmas the day after Thanksgiving.  When I was a little girl, we waited to decorate.  After Thanksgiving, the next season, a holy one, began with lighting the first candle of the Advent Wreath.  It wouldn’t be until after lighting the third candle that we would think to put up the Christmas decorations.  Our focus was on the waiting – of Christ’s birth and of life He would bring to the world.  When they were little, my kids’ excitement about Jesus’ birthday was as palpable, but they had me cave and break my own family’s tradition to start a new one.  They were desperate to decorate and for the right reasons.  They of course were thinking of Christmas gifts, but they also knew the reverence of two seasons we would be celebrating – the Advent season and the Christmas season.  Seeing how excited they were for both, we started putting up decorations the day after Thanksgiving.  So that the Christmas season is fully remembered, I was – and still am, adamant that our decorations stay up until Epiphany, a Catholic feast day that I look forward to.  

When all five kids were home for Thanksgiving this year, our decorating tradition continued.  My husband and I hardly had to do any of the work.  Once the kids saw that the boxes were out of the closet, the house was decked!  The tree was up, the stockings were hung with care, the mangers were placed in their usual spots with the Baby Jesus figurines tucked safely away until Christmas day, and the Advent Wreath was found.  Finding the Advent Wreath has become a special tradition as well.  For years, that box was put away first and at the bottom of one of our large decorating boxes.  Finding it – and hoping that all four candles were with it, became an annual hide and seek game.  Last year, we found the wreath but not the candles, so I improvised.  It was not my proudest moment.



I’ve had to improvise before and all the way back in 2009. 

Again, not one of my proudest moments. 

Neither was this one in 2020.



Sadly, I was not more organized in 2021 either.

Rabbit! Rabbit! (It's December 1st!)

By Cathy Jameson

Every few weeks I remember that I have another email address.  When I remember that, I’ll remember that I have not checked it in quite some time.  I prepare myself for an onslaught of spam messages when I finally use the right password to log in.  I use that email for store or restaurant rewards and for memberships I needed at one time but don’t use too much any longer.  One message I know I will have every single time I check that email address is from a photo service.  I’ll have at least 5 – 10 messages actually.  Free prints!  Free shipping!  Do you want to see your memories from 10 years ago? 

Some days I do; but other days I ignore those emails and those memories. 

When the kids were younger, I printed pictures.  We’d frame some, send some to extended family, and keep some to give to the kids when they were older.  Most images were taken from a digital camera, which I can look at any time I want to, but there’s something about holding a printed photo.  While cleaning out Ronan’s room over our Thanksgiving break, I found a few photos on his bookshelf.  Most were of the siblings, but one was of me and my husband.  It’s one of my favorite photos of us, taken at our favorite Mexican restaurant the day before my husband’s birthday and right before he left on a long trip.  The photos we’ve printed are the really good photos of really good memories.  This photo service, though, has some that are not great memories.  Instead of wanting to go in and delete them, I ignore them.  I do that because I know that if I start looking at one set of photos from all those years ago, I’ll want to look at all of them.  I have to be in the right mindset to do that, and this week, with as many things as we had going on, I didn’t need the distraction nor the emotional rabbit hole I knew I would end up falling into had I looked.

This week, several family members made the long trip to come see us.  Our house was full, loud, and fun!  The kids watched movies, they played the piano and their guitars, and sang together.  We talked, feasted, danced, and we laughed.  Ronan tolerated most of it, and I loved pretty much every second of it. 

When memories were shared this week, it was the very good memories. 

When family members were brought up, they were the family members we miss the most. 

When the cameras came out, we captured the very best side of us – the side that smiles the biggest with expressions that exude the most amount of joy. 

Other holidays and family gatherings have not had us smiling.  But this one was really one of the best ones.  It was so good that I almost forgot about the other side of life – the one that comes with struggles and with frowns.  We’ve inadvertently captured those on film and unknowingly scroll through them long after a frustrating event is over.  We didn’t have to deal with that this week, thankfully.  Even if we did, I think I could’ve put some of the sadder emotions on hold. 

With as many family members as we had with us for the last ten days, someone was always ready to help – either me or Ronan.  I wanted to be hostess with the mostest and got to do that.  I love when I can provide everything for our guests.  It can be a lot of work to provide for everyone, but it’s hard for me to accept help sometimes, even from the nicest people.  To be gracious is a gift.  And to have as many hands as we had wanting to help me was a blessing.  I’ll hope for more of those blessings next month when another holiday comes around.  It’s my absolute favorite one of the entire year.

Even though Ronan doesn’t show us that he understands what these holidays mean, like past holidays, he was aware that something big is going on.  He showed a little bit of interest, especially when new and amazing foods show up on the table but would soon go back to his normal activity.  That meant he was back in his room, listening to his music, watching his movies, and tolerating the loud, the happy, and the fun from a distance.  The longer he tolerated that and us, the longer we could enjoy ourselves.  Our guests understood and gave Ronan the space and time he needed.  He was thankful for that.  We were thankful, too.  We’ll hope for that again when we celebrate the most special day of the year. 

Cathy Jameson is a Contributing Editor for Age of Autism.

###

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Men too

By Cathy Jameson

Since starting a grad course on special education a few months ago, I cannot tell you how many times I read something from class that directly related to an event in my personal life or my professional life.  The course has been a challenge, but it’s been a blessing.  It’s been perfectly timed more times than not, too!  I love that and will be forever grateful for the knowledge I’ve gained and regained these last few months. 

Today’s coincidence happened after a difficult week of managing some issues both at home and at work.  I had control of some of them, but then I didn’t have control of others and had to let them go.  Juggling so many aspects of life – both mine, my son’s, and others at work takes time.  It takes a toll on me, too,and on those around me.  After getting through one of the frustrating issues that I could get through, I saw that a friend shared a link to a documentary about parents of children with special needs.  Wow, another coincidence.  

I had just opened the next chapter for class, which was all about parents and families of children with special needs.  The opening section included general information and statistics.  The next two sections mirrored what I know and experience as mom of a child with special needs.  Some of the parenting information is what parents across the world deal with. The further I read confirmed what many of us know to be true – levels of success and stress fluctuate for all parents, but those parents with children with special needs tend to handle quite a bit more.  

(Exceptional Learners:  Introduction to Special Education, 15th edition)

By Cathy Jameson

The world is a buzz right now with the news of the new administration’s cabinet members.  Big changes are coming at the Secretary level and the Director level.  The biggest news for our community seems to be of Robert F. Kennedy’s nomination as Secretary of the Department of Health and Human Services.  A shakedown is coming, and so many people shared how excited they were when they heard that news late last week.

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Kennedy is someone who listened.  He researched what parents were telling him.  Not only that, but he hit the road with us – and not just once.  He’s been with us at several events for several years now. 

Green Our Vaccines Rally, Washington, D. C. - 2008                          

Autism One Conference, Chicago - , and that’s our Kim Rossi in the picture with RFK, Jr.!

Trace Amounts, Washington, D. C. - 2015 https://www.youtube.com/watch?v=XxLjtLPNxP4 

V is for Vaccine, California - 2019

Long before this nomination, RFK, Jr. has been a voice for us and for our children. He’s promised to make necessary changes in the District and across the country.  His hope and efforts mirror what President-elect Trump has asked him to do:

“He wants the corruption and the conflicts out of the regulatory agencies. He wants to return the agencies to the gold standard, empirically-based, evidence-based, science and medicine that they were once famous for. And he wants to end the chronic disease epidemic with measurable impacts on a diminishment of chronic disease within two years.”

Many would love to see that happen, too, including my family. 

The first memory I have of Robert F. Kennedy, Jr. working alongside parents in the autism community goes back to the Green Our Vaccines Rally in 2008.  Before that event, he’d written a lengthy article that was published in print in Rolling Stone Magazine and in Salon Magazine online in 2005.  At the end of the article, he shares:

I devoted time to study this issue because I believe that this is a moral crisis that must

be addressed. If, as the evidence suggests, our public-health authorities knowingly

allowed the pharmaceutical industry to poison an entire generation of American

children, their actions arguably constitute one of the biggest scandals in the annals of

American medicine.

Salon took down the entire article six years later, reposted parts of it in 2022, but you can still find it on the web. The pro-vaccine crowd were quite vocal in their opinion of Kennedy back then and what he stood for.  He’s ready to take them on again as well as the new naysayers who would rather he be silent.  I don’t think being silent is possible for RFK, Jr.

I pray that Robert F. Kennedy continues to be a voice for our children for as long as he has his.  Having someone in the position he’ll soon be in has been a long time coming. 

Cathy Jameson is a Contributing Editor for Age of Autism.

###

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By Cathy Jameson

I’m nearing the end of a grad course that I am taking, and that means catching up on lots of reading over the weekends.  I had extra time last week to get ahead on two papers that are due at the end of this month.  For the first paper, I had to compare and contrast two disabilities and include an advocacy group’s information.  I wrote about Williams Syndrome, Regressive Autism, and included details about The Autism Community in Action. The second paper topic was disability in the media.  Since I’ve written about music and sign language before, I thought I’d edit my latest assignment a tad and share it as today’s post  

Enjoy!

When I saw the prompt for this paper, I knew immediately that I was going to write about a video that I saw back in the mid2010s.  The video, which featured a young woman using American Sign Language (ASL), was one of the most powerful videos I had ever seen.  So moved and impressed by her and her ability, I remember sharing the video with family and close friends.  For years, we had been using ASL with my son who was non-verbal.  For years, I also noted that music moved him.  From overwhelmingly peaceful pieces like Mozart’s Concerto 21 to incredibly profound songs, like Nine Inch Nails’ “Every Day Is Exactly the Same”, I had been in awe of his music choices.  It took me awhile to find the exact video I wanted to write about for this assignment, (it has been taken down from several sites by 8 Mile Productions for copyright infringement) but when I found it, the emotions I remembered from almost a decade ago came rushing back.  So much so, I shared it again with family and close friends.  

Accompanying stories featured Shelby Mitchusson and her interpretation of Eminem’s “Lose Yourself” with sign language. With how unique the story was, many outlets shared it.  Mitchusson’s reason for sharing the video, besides that it was created for an interview to be an interpreter, was that she had “…a deep love for interpreting music…”  The original articles of the sensational story were not terribly long.  Ones I searched for today were even shorter, but the video fills in the gaps and shows just how powerful the  interpretation of a song can be.  

Mitchusson uses a common form of communication that students who are deaf or hard of hearing and students who have been diagnosed with non-verbal autism may also use.  While she is not the person with the disability, Mitchusson’s ability to sign gives a chance to those who cannot hear the music to see the music.  It allows them to watch the lyrics, to realize the tone, and to view the depths of emotion come to life visually.  

The reporter picked up the story of Mitchusson’s ASL performance from other sources when the video gained popularity.  An audition tape for a job with concert venue Autism City Limits, many who saw it were completely in awe of it. In searching for more news from this timeframe, I saw that several outlets shared similar information.  All reported that Mitchusson’s talent was undeniable, and several included that she did indeed secure the job.  

While researching for this paper, I learned that the American Disabilities Act requires that interpreters be available at venues if concert goers request that.  Quite a rare job, it could help Mitchusson, and other interpreters, maintain a consistent presence at large entertainment events.  Not only does that position help the fan who may have hearing differences, but it reminds the industry, and the public, that audiences with unique needs and disabilities can be served.  

Social media and the internet helped Shelby Mitchusson’s story reach many audiences across all abilities back in 2015.  From local headlines to international headlines, Mitchusson brought awareness and appreciation to scores of readers, listeners, and followers.  The news sites that picked up her story were not just disability-related websites either.  The message shared was a universal one, and those with disabilities, and those without, were impressed with her talent.  

When the story and video went viral, disability groups commented on how well Mitchusson signed the lyrics and how she perfectly shared the emotion of Eminem’s song.  She shared music with those who could not hear but who very well could feel it.  Eminem is known for deep, raw commentary in his rap songs, and Mitchusson successfully conveyed that in her video.  Looking at her other interpretations,  Mitchusson delivers what artists wish to evoke to their fans and followers – a connection.  

Just like the first time I discovered it, I’ve rewatched the “Lose Yourself” video several times over the last few weeks.  Each time I do, I’m reminded of one of my favorite quotes.  “Where words fail, music speaks.”  In Shelby’s case, the music she is interpreting truly speaks volumes.

Cathy Jameson is a Contributing Editor for Age of Autism.

###

Some of us were pushed. Some jump. It's really hard for most of us to imagine signing up for a vaccine clinical trial. But Brianne Dressen, did. And this is her story, written by Caroline Pover and new from Skyhorse Publishing, Worth A Shot.

By Cathy Jameson

…it’s a testament to you…

I don’t normally invite mainstream medical providers into my home, but I welcomed the nurse in with open arms.  She’s fairly new to Ronan’s team of providers. Last time she visited, she quickly recognized that we’re not a typical family and that we don’t accept things that others typically do – like getting a flu shot.  Not only did this nurse remember that; she also respected it.

We’ve fought hard for Ronan, and we don’t want to slide backwards.  The fight continued just a few weeks ago.  Thankfully, other of Ronan’s providers have been quick to advocate for him.  In doing so, they helped cut some thick, red tape.  Testing is expensive, and insurance companies are rash and say no to those kinds of tests.  Good doctors who spend time with their patients and their families refuse to let no answers be the final answer.  Good doctors, like Ronan’s, fight for their patients.  Testing was approved and done. Since it’s so unique, it’s understandable that it’s taken longer to get results.  While we wait for those, we review with others, like the nurse who came to our house.  Checking with us every few months, she monitors several services that are provided to him.

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Daily living skills

Medication needs

Living needs

Behavioral needs

A young man like Ronan has many needs from learning how to perform very simple daily skills to us managing his very complex medical issues.  With all of it, my husband and I continue to step in to make sure Ronan is taken care of.  The nurse who came by ensures the services needed are maintained.  I used to not like having to reveal all the things to all the people we’d encounter.  Less is more!  But my child needs more than his typical peers do, we do reveal a little bit more than sometimes we’re comfortable.  The medical people are never squeamish, and most have been incredibly respectful of milestones Ronan is still working on. They understand the big picture and that it’s taken small baby steps for us to get to where Ronan is today.  

He's not closer to independence like we’d hoped and prayed for when he was younger.  But he is worth every effort, including the efforts made by the young nurse who came to our house to work on his case.  “I’ll keep in his file that you still require the care of attendants to help oversee his daily activities.  I’ll include the latest neurological issues he’s dealing with.  Since those have worsened, he won’t be in danger of moving down the scale.  I’ll update that he’s still not able to accomplish those bathroom skills also that we’d hoped he would have achieved by now.”  

Not that I’m rooting for failure, but I thanked her for knowing that worse is better for him in this instance.  The case she was updating provides benefits for us that would be out of reach.  Finding the care, the supports, and the time this program offers us has been a lifesaver.  Those who work with us personallyhave been nothing but helpful.  Other groups don’t always remember the human side of special needs care, but this group does.  So, I didn’t waiver when asked to sign the yearly document.  It’s time sensitive so the nurse promised to deliver it without delay.  She’d shared with me that she, too, has a family member who requires care beyond her family’s abilities.  The frustrations she’s recently felt as she searched for available benefits are ones I have felt in the past.  Sharing her story gave us a connection and one that I very much appreciated.  When the person fighting for you is dealing with similar situations, the bond created can be very strong.    

As we wrapped up our visit, I shared a little bit about where Ronan’s siblings were since the last time the nurse visited.  She asked about their latest accomplishments and was impressed that they still willingly pitch in whenever they’re around.  “It sounds like you have such a lovely family,” she said.  Knowing that they are still drawn to being home, she added, “That’s a testament to you and your husband…that gives me hope.”  It was my turn to smile.  

My family.  

Those sibling.  

They don’t waiver, and that, too, gives me hope.

Cathy Jameson is a Contributing Editor for Age of Autism.

Some of us were pushed. Some jump. It's really hard for most of us to imagine signing up for a vaccine clinical trial. But Brianne Dressen, did. And this is her story, written by Caroline Pover and new from Skyhorse Publishing, Worth A Shot.

###

Preschool teacher Brianne Dressen wanted to help end COVID. What better way than to participate in a clinical trial for the vaccine? But something went terribly, terribly wrong. 
 
Worth a Shot? by Caroline Pover tells the true story of what happened to Brianne’s body, mind, and spirit. 
 
This book chronicles Brianne’s journey as she discovers the intricate web of systemic failures that affect the health of millions worldwide, and unwittingly becomes a global advocate for a cause that nobody wants to believe exists.

The message was quick but intriguing – she was reaching out to see if I might be interested in her latest autism adventure – to get thousands of PubMed articles, about comorbidities that occur with autism and how to treat them, on an AI platform for clinicians and parents to use as a reference. Those wishing to support the cause are gathering in a few weekends at an event in Tysons Corner, just outside of Washington, D.C. Organized by Leadership & Innovation Foundation,  tickets for the event can be found at this link.  

By Cathy Jameson

Right after I got a new phone, I set it on the counter with my old phone to transfer data.  That would take a bit, so I got some things done in another room.  I was hoping to get a little discount when I upgraded, but I was a little disappointed when I couldn’t exchange it.   I’d have to pay full price for a replacement. That old phone was my lifeline for a long time.  I used up every bit of storage in it.  Old texts, old photos, old messages, and old notes.  It held a lot of history and was well worth the cost.  I was hoping the new phone would be the same.  

When the new phone was updated, I couldn’t believe how quickly the apps were responding.  What a difference!  While reading through several notifications and messages that came in while it sat on my counter, I saw a number I didn’t recognize.  I could see the first two lines of the message and could tell that whoever sent it seemed to know me.  I didn’t open it right away but did a quick search on my old phone for the number.  Nothing came up.  I typed the number into my email search.  Nothing.  I looked online also.  No connections.  I’m not one to open messages from random people, but this one didn’t give me an uneasy feeling, so I opened it.    

Ohhhh!  It’s from Casandra.  She’s amazing!  

She really is.  

The message was quick but intriguing – she was reaching out to see if I might be interested in her latest autism adventure – to get thousands of PubMed articles, about comorbidities that occur with autism and how to treat them, on an AI platform for clinicians and parents to use as a reference.  She also shared that Dr. Rossignol was part of the efforts.  

Autism Knowledge Gateway,  which launched at a recent TACA  conference, is a dynamic resource in development. It aims to provide clinicians, parents, and educators with access to a robust and easily searchable repository of over 40,000 peer-reviewed research papers, comprehensive information on available programs and resources dedicated to supporting ASD families, and a collaborative chat room within the Gateway to facilitate in-depth private discussions of case studies and current research among clinicians, as well as supporting open chat rooms for more collaborative discussion.

Those wishing to support the cause are gathering in a few weekends at an event in Tysons Corner, just outside of Washington, D.C. Organized by Leadership & Innovation Foundation,  tickets for the event can be found at this link.  Donations can be made at that link as well. 

I’ve seen our community thrive when families help one another, which is why I’m sharing this information today.  Casandra’s sons have similar health issues as my son does.  She’s moved mountains for them.  While we haven’t seen each other in quite some time, I’m so grateful that she checked in with me and shared information about her latest adventure and about the groups involved.  I hope that many families will be blessed by their efforts.  

Cathy Jameson is a Contributing Editor for Age of Autism.

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Denial: How Refusing to Face the Facts about Our Autism Epidemic Hurts Children, Families, and Our Future

by Mark Blaxill and Dan Olmsted | Jul 25, 2017

By Cathy Jameson

When I started teaching back in the 1990s, I was so excited to have my own classroom.  I couldn’t wait to teach young children!  Always envisioning working with the early childhood and the younger elementary grades, I felt right at home in 2^nd grade and 4^thgrade.  Third grade was fun to teach, as was preschool, but there’s just something about 2^nd and 4^th grade that really appealed to me. 

I taught at small, private schools for the most part and usually had typically developing children on my roster.  I can recall only two students with documented learning issues.  One child had testing done prior to being in my classroom, and the other was in the process of testing while I was her teacher.  Both eventually ended up with accommodations, but it was so close to the end of our school year together that I don’t recall how much I personally had to do.  I also can’t remember who helped these students, but someone on our small team of faculty members worked with the students in an official capacity. 

While I don’t remember too much of their education plans, I do remember saying how much I appreciated the other people working with them.  When someone asked me if I’d ever want to work in special ed, I clearly remember saying, “No, that’s not for me.  I am so glad that God made special education teachers!  They are really amazing.” 

And most are.  

Ronan had a few amazing teachers and paraprofessionals during his special educational career.  We still think of them and are very thankful for the years they spent with Ronan and us.  During the good years, I remember sharing my thanks several times, “I am so glad that God made you special education teachers!”

When I got to tiptoe back into the education field a few years ago, I loved being back in an general education environment with elementary-aged students.  Blessed to work with both 2^nd grade students and later 4^th grade students again, I felt like I was on the top of the world.

I have a different position now.  Part of my new role keeps me looking closer at early childhood development.  For my job, and because it’s a topic I am drawn to, I frequently read about typical milestones, about screenings and assessments for young students, and about education in general.  I have spent hours reading about current educational trends and have pondered how today’s educators can successfully implement high quality teaching strategies.  The more I read, the more I could see that general education has taken a hit.  It definitely changed after covid – and not for the better. 

It was time that I do something more than just read and share the information with friends and colleagues.  Gen ed, in some places, was starting to sound more like special ed with how many students were dealing with learning struggles.  Wanting to understand why they were struggling, and also gain insight on how to help the families I work with, I applied for a grant to take a graduate class all about special education.  The thought of taking a course while Ronan is going through his recent medical issues was daunting.  My time is not my own, even more so with his needs.  But I applied anyway.  Within a few weeks of applying, I learned that I could register for the class.  I was back in school again…this time for me!  

I have actually enjoyed the intensity of the course and the knowledge I’m gaining from it.  It’s been five weeks, and it has been eye opening.  The best part is that all of the effort that I normally put into the mountains of reading I do is now coming back with a grade (a solid A so far!).  The only frustrating part was not from the workload but was when I saw that the textbook brought Wakefield into the conversation about autism.  The authors didn’t need to, but they dedicated a page to that old “controversy” anyway.  

Autism is just one topic that on the syllabus.  I’m learning about severe disabilities, intellectual disabilities, and quite a few other disabilities.  The course is heavy with assignments, including reflection papers, quizzes, projects, readings, and optional readings that are geared toward the settings that I and the other educators are familiar with.  In a few days, we have the option to participate in a call with the professor and the group that gifted the grants.  They’d like to know what we think of the class so far and what are plans for the future are – will we take other classes?  or complete the degree?  or pursue special education teacher licensing? 

They’d like a decision, but it’s too soon to tell. 

With two of my kids in college, I don’t know if adding another tuition bill would be wise for us.  I took this chance to tiptoe back into my own education to see if I could handle the rigors of a grad-level course while juggling all the things and all the people in my life.  I’m juggling things well right now, so if another grant found its way to me, I know I would jump at the chance to continue my own education.  Why would I not want to take advantage of putting the reading and researching I’m already doing into something formal like a degree or a certificate? 

As exciting as that is, that’s a thought for another day.  I’ve got to get back to finishing a project and a reflection paper.  Easily, I could bring personal experience in and write about autism and mitochondrial disease for my project, but I’m exploring another topic in special education.  With 8 more weeks of classes, I know I’ll get to explore, read, and research quite a bit more.  I’ve hit a new level of exhaustion with all of this studying I’ve been doing lately, but I really can’t wait to learn some more.  

Cathy Jameson is a Contributing Editor for Age of Autism.

Your Special Education Rights: What Your District Isn't Telling You.

By Jennifer Laviano and Julie Swanson

The definitive guide for parents of children with disabilities is out.
This book is authored by two special education experts and draws on decades of experience from the front lines of special education advocacy.

The authors, Jennifer Laviano and Julie Swanson, detail a strong, practical, and results oriented perspective that helps parents cut through the fog of special education to get the services their children deserve.

"Our bottom line is parents are often ineffective at advocating for their child because they don't know their rights," said Jennifer Laviano, co-author and special education attorney. "We see it time and again: The child doesn't get what he or she needs because the parents don't know what they don't know.

Today's post goes back fourteen years, to 2012.  Do you have any idea how long some of us have been caring 24/7/365 at breakneck speed for our children? Some of our children are approaching 30. We do it with a partner. We do it alone. WE DO IT every day. We never do it alone, as long as Age of Autism is here.

By Cathy Jameson

This old post of mine has been on my mind a lot lately.  That's because lately, we have a different window of time where Ronan is doing okay.  He's doing okay for a number of minutes.  Then, he starts to not do okay.  I can get a lot of things done from minute 1 to 66, especially if I've planned out my morning the night before.  But 66 minutes isn't enough time to do everything, especially when the next 84 minutes, or longer, is sitting seizure watch. 

In those next 84 minutes, I can't do much of anything.  

I can worry a lot, though.  

And most days, I do. 

Parenting a child with complex medical issues is challenging.  When I think back to when I wrote this post, I faced different challenges.  Back then, besides the medical issues, we dealt with a lot more behavioral issues.  Those have subsided over the years.  What hasn't changed is my devotion to my son.  I pray that I can always push through every challenge he and I face.  I pray that I can remain not only physically strong for him but also mentally and emotionally strong as well.  

How about you?  What are your current challenges?  And, how long can you set your timer?  

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March, 2012
By Cathy Jameson

A quarter of a room vacuumed.  Half a lunch downed.  A portion of laundry sorted, washed or folded (but never completely put away).  A full head swivel.  In those spurts of activity, that’s what I can get done before I have to look up for Ronan.  Only when I can see or hear him do I breathe a sigh of relief. He’s staying with his activity (for now).  He’s present.  Accounted for.  Good.  He’s safe.  I carry on.  My inner clock timer resets. 

Three minutes. 

This is how long I have in between where I left Ronan and what I am attempting to do.  Shower?  Forget it.  Gourmet meal?  Never!  Baking?  You must be kidding.  I have no time to commit.  What other housewives might likely take for granted or even resent I blaze through.  It’s nearly impossible to do one thing from start to finish while I keep one ear listening for Ronan and one eyeball on his constant look out.  But, that’s how much time I have.  Three minutes. 

Repeat. 

***

When LJ Goes wrote her powerful piece about what two minutes in the life of a child with autism looks like I thought, “Poor LJ!  Two minutes?!  How awful!”  In two minutes her life goes from normal to unbelievably wrong.  I walked around my house the week after her post went viral thinking about those two minutes.  I thought about LJ running franticly  through her own house trying to stop the madness.  I thought about that child of hers how he screams, literally screaming in pain trying to figure out how to control a body that is riddled with toxins.  In two minutes her child spiraled to a place no parent should ever have to witness.  How I wish it were different. 

I’ve been able to think about LJ’s two minutes for months now.  Her article haunted me for days and days, and obviously for a long time as I’m just now sitting down ready to reflect on and write about it.  Since reading it I ended up timing how long my son Ronan was willing, and later able to sit for an activity.  It’s not very long at all.  Once he’s done, he’s done.  Redirecting is difficult.  Starting something new takes some cajoling.  Distractions fill his gaze.  Frustration at not being able to complete simple things hangs over him.  Three minutes isn’t very long, but for Ronan sometimes his three minutes is long enough. Not only does his time limit stop him, it seriously hampers what I can and cannot do.  It also makes me prioritize what I want to do or don’t want to get done. 

Something had been bugging me since last fall.  I added it to my “Someday Get It Done” list--those are big projects but have incredibly low priority.  On that list was rake part of the yard that had been neglected around the same time I had surgery last November.  Feeling strong enough to do yard work a few weeks ago had me bump Rake Leaves over to my regular “To Do” list. 

When we hit 70 degrees over a weekend I thought, Perfect!  I’d been aching to be outside in the sunshine.  Plus those unsightly leaves needed cleaning up.  A wind storm had brought many down and our neighbors dumped a few over on our side of the property line.  I had a mess to deal with.  My husband had already cleared a majority of the yard but the portion that was left bugged me.  Not wanting to take time away from Ronan or other family events we’d planned since November, the leaves were forgotten.  I would usually have to wait until someone else could sit and be with Ronan if I wanted to spend the amount of time it would take to bag the leaves anyway.   Remember his three minutes?  Three minutes indoors or out.  Three minutes.  Tops.  Plus, he has a habit of bolting when he’s outside. 

But, the warm weather was enticing.  I decided I was going outside no matter what.  Ronan would have to accompany me because my husband had to work over the weekend.  I thought it would also be a good time to start shaping Ronan’s outside routine.  With spring around the corner, it was time to practice outside safety again.  I hadn’t planned anything else on that sunshiny day and wanted to take advantage of the warm air, my better energy level and Ronan’s cooperation.  He’d been in a super mood that morning.  No meltdowns, great communication and even better, he had a tad longer time-on-task attention span.  My other kids were out gallivanting through the neighborhood with their friends while my husband was at work.  Half my responsibilities were taken care of so it was just Ronan and me.   We’d go outside together.  Surely I could get some yard work done, right?

I put on some old jeans, got Ronan’s necessaries (iPad, cup of almond milk, a hat he likes to wear) and we went out to the back yard.  I set Ronan up on the deck—close enough for me to see his movement and also to hear the iPad apps to know he hasn’t left the deck area. 

Rake, rake, glance up at Ronan.  Rake, rake, shove a handful of leaves into a bag.  Rake, rake…“Ronan? Ronan, wait!  I’ll be right there.”  I ran over to the deck as he signed “listen yes” while flashing me a big smile.  He’d somehow turned the sound on the iPad down and was ready to travel down the stairs and across the yard to me.   I meet him half-way and resituated him back on the deck, “Here you go, Buddy.”  Back to the pile of leaves I rushed knowing that inner timer was ticking.  I only had two minutes left before resetting…more leaves, more raking, glance up, smile at Ronan, reassure him he’s doing great, “Good job, Rone!”  Fill a bag, maybe even two.  Maybe not.  

As I raked and stole frequent glances toward Ronan I wondered was it worth it.  Is raking leaves really something I wanted or needed to do?  That day, yes. I wanted to prove that I could do something that other people do.  I wanted to check off a list I rarely get to.  I wanted to soak in the rays of that sun.  I wanted to sweat outside again.  I wanted Ronan to tiptoe back into the outside world he loves to be in but cannot navigate on his own.  I wanted both of us to enjoy the feeling warm weather brings—freedom.  Freedom from the walls that feel like they are caving in during the long winter months.  I wanted and got all of those moments. 

***

My three minutes seem like the opposite of LJ’s two minutes.  I have 60 seconds more to attempt to do something while LJ might wish for 60 seconds less of the struggle she has.  I’m quickly getting things done like cleaning, assisting one of my typical children with homework or creatively planning how to make the next meal hoping it’s somewhat edible by the time it’s served.  LJ is in full-throttle defusing a child who didn’t deserve what was done to his body.  Her inner timer must pass out after an episode.  Mine, as long as Ronan hasn’t wandered off into danger, quietly resets itself and I restart a household chore, a task at hand and even my attitude.  Three minutes to scarf down a meal before having to either get up to find Ronan, to send one of his siblings to check on him, or to hope he comes back through the room he just left so I can lay eyes on him again.  

“Whew! He’s okay.  Now, quickly.  What’s next?”

It was hard to read LJ’s post, and then to reread it several times over the last few months.  I felt like I had to reread it.  I wanted to hear her words and imagine what must go on in the mind of another parent.  Who better to learn from than one of the greats?  LJ and her husband are never going to stop trying to help Noah.  They’re going to kick this autism out of their house because it has no place in their child’s life.  It’s reeked major havoc and has wasted too much of their child’s time.   Their commitment feeds my own and reminds me that I am not alone in what many days feels like an endless battle.

I might only have one more minute than LJ, but it doesn’t matter how much time we have or don’t have.  After taking care of our children we’re using up every second of every day to read, write and share what we have learned.  We’re doing this because the autism clock is ticking, and sadly it doesn’t slow down.  Time is ticking against our kids’ development.  It’s ticking closer to a despair that sometimes hangs over our heads.  The longer we feel those minutes ticking away, the louder LJ and I both seem to get. 

We’re reaching out to someone new with our tired, worn-out, awful stories.  We’re forced to talk about what can happen in two very short minutes and why some of us are only able to work in three-minute intervals.  We’re working overtime because more children are falling ill.  Vaccine injury hasn’t gone away.  Autism is becoming an everyday word and diagnosis.  New people are added to warrior parent status.  We have to harp on this topic until every disaster is cleaned up, until attention spans can grow longer, until children’s health and development are valued.  Too much has already been taken from us, from Noah, from Ronan and from so many children.   One day, and I wish it was someday soon, that has to stop.

I’d love for my inner timer to not have to reset.  I’d love to have the worry, stress and moments of despair be whisked away.  So much has been taken away including our precious time.  Time is one thing that cannot be stopped or exchanged.  How I’d love to go back in time to change a few decisions.  Two minutes to change my mind about a medical decision.  Three minutes to feel confident I did the right thing.  Time.  It feels like it’s slipping through my hands.  How I wish I could ask for some of it back

Cathy Jameson is a Contributing Editor for Age of Autism.

By Cathy Jameson

I had the day off on Monday but ended up going into work to drop something off and to pick something up.  I was going to run some important errands afterward, so I didn’t stick around too long.  These are the errands that can only be done during work hours.  Never having a chance to get to those, I was grateful for the time off to finally get to them.  As I drove into work, I realized I had forgotten to make a copy of the paperwork I needed to mail on my errand.  So much has been going on at home that that simple step got overlooked.  I learned the hard way years ago to make a copy of documents going to government agencies.  It’s always their word against yours unless you can prove it with documentation.

So, while I was in the building, I made copies of that official document that I was finally about to mail.

Four copies.

Done in the open.

But made with guilt.

As I left and started down the road to the post office, the secretary texted me, “Cathy, can you call me when you get a minute?”

OH NO!!  SHE KNOWS!  AND MY BOSS KNOWS, TOO!

We have a group text, the three of us, and I thought surely I was doomed.

Below is Cathy Wrote Best of." She has the weekend off.  Special Education has gotten more complicated than ever, as school districts deal with the onslaught of students needing help. If you have a story to share, please comment. 

As a sidenote, one of the best books you'll NEVER hear about from your district is Skyhorse Publishing's Your Special Education Rights, written by SpEd lawyer Jen Laviano and Advocate Julie Swanson. It offers an "inside baseball" look at what districts will do to protect their budgets and behinds, even at the expense of your child's legal rights.

By Cathy Jameson

IEP.  That acronym can conjure up one of many emotions.  From frustration to relief, what it takes to create an Individual Education Plan can be one of the biggest stressors that special needs parents face.

Susan was one of those parents.  She was becoming more and more nervous about her daughter Anna.  Knowing something just wasn’t right, Susan’s suspicions were confirmed mid-way through Anna’s kindergarten year.  Watching her bloom much more slowly than her peers, she wondered if what she was seeing were tell tale signs of a developmental delay or more specifically, a learning disorder.  Fearing that Anna was going to need a great deal of help to catch up, Susan asked the kindergarten teacher for advice and to set up a parent conference. 

Susan and the kindergarten teacher, Miss Taylor, compared notes as to what each was seeing.  Susan shared how Anna had started to become withdrawn and temperamental once she came home from class.  Wondering if Anna was trying to keep it together at school but lost it at home, Susan suspected her school struggles were the cause of the change in behavior.  Homework was becoming increasingly difficult, bedtime was emotional, and both Susan and her husband were worried that Anna wasn’t grasping the academic demands in the classroom. 

Susan was hoping Miss Taylor could help pinpoint what Anna’s delays were and address them in the classroom.  She liked the school and the staff and wanted to work with them to get her daughter the skills she needed to be successful in the future.  Thankfully, the school could help, and in fact, were required to do so especially if what Anna was dealing were issues that a more specialized program could focus on.  

Anna’s teacher, Miss Taylor, was in agreement that she, too, was beginning to observe Anna slipping behind.  Together, Susan and Miss Taylor worked together to start the evaluation process. Miss Taylor assured Susan that a screening would begin right away.  During this time, Miss Taylor and other district staff were assembled to review testing tools and what they’d need to evaluate Anna.  After Susan was informed of the tests chosen and agreed to them, Anna’s testing began.  A determination meeting, one of the first formal gatherings of the IEP process, was scheduled for 3 week’s time.  Susan put the date on her calendar and stayed in touch with Miss Taylor until the meeting.

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When a parent or teacher suspects that their child has a problem or concern, either the parent or the teacher can request that a child be evaluated.  Once the concern has been submitted to a representative of the school (also known as the local education agency, or LEA) a screening must begin.  Depending on the state guidelines, a school district will have to complete the testing within a certain timeframe.  

If the evaluations come back that determine a child does have a disability per IDEA guidelines, the need for special education will be discussed with the parents and with an IEP team.  IDEA, the Individuals with Disabilities Education Act, enacted in 2004, is: “…a law ensuring services to children with disabilities throughout the nation. IDEA governs how states and public agencies provide early intervention, special education and related services to more than 6.5 million eligible infants, toddlers, children and youth with disabilities.

Infants and toddlers with disabilities (birth-2) and their families receive early intervention services under IDEA Part C. Children and youth (ages 3-21) receive special education and related services under IDEA Part B.”

This means that public schools provide free-appropriate public education (FAPE) for a child who needs special education and related services.  The child’s parents, who will not incur any costs when the child is enrolled in those services, take several more steps with the school to create a specific plan for the child.  Those services will be outlined in the IEP. 

IEPs are legal documents that dictate a child’s educational plan.  If done well, the IEP includes input from the entire IEP team who service the child’s needs.  While it takes a village to raise a child, it takes a team to create, implement and track the goals and outcomes of a child’s IEP. 

Typically, the team is made up of the parents, the general education teacher, the special education teacher, a school psychologist, various therapists (if your child requires related services such as physical therapy, speech therapy and occupational therapy), your child (if you wish them to be there, or if they are able to contribute to their education plan), and of course, at least one administrative representative from your school district, which is usually the principal or vice principal of your child’s school.  As time goes on, and depending on how the child’s educational needs, other people may be added. 

A child, after being evaluated, can be found eligible for special education and related services in the following disability categories:

Autism

Deafness

Deaf-blindness

Developmental delay

Emotional disturbance

Hearing impairment

Intellectual disability

Multiple disabilities

Orthopedic impairment

Other health impairment

Specific learning disability

Traumatic brain injury

Visual impairment including blindness

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A great deal can be done to support a child with a disability.  It takes careful consideration and a well-thought out educational plan to get that child the support they need.  That’s what Susan wanted for Anna.  Because she was struggling in specific areas, during the referral process Anna underwent several tests:  a psychological evaluation, an educational evaluation, plus a speech and language evaluation as well as a fine motor delay evaluation.  It took several days to complete the testing including tallying the results.  Those would go in a formal report and be presented to Anna’s parents and discussed at the determination meeting.  Throughout the testing process, Susan was kept informed of which tests Anna’s underwent and was eager to know the results. 

Now that all of Anna’s testing was complete, the next step was to wait to hear the schools’ recommendations.  Susan had just received the invitation to meet from the district.  She was available for the day and time they suggested and started going over in her mind what she wanted to talk about with the team.

Susan wanted to be an active member on the IEP team.  She had already made a list of Anna’s strengths and weaknesses.  She had also started to do a little bit of reading and asked another mom, who had a child on the spectrum and was two years older than Anna, what she knew about their district’s special ed program.  From that conversation, Susan learned she can and should play a very active role in the IEP process.  She started thinking about what goals she wanted for Anna—goals not just to get through first or second grade, but beyond when Anna would be done with school and hopefully on her own.  She wanted Anna’s school experience to be positive where she’d learn, grow and build life-long skills to be an active member of society. 

Suspecting that it was going to take a few more professionally-trained people and a bit of therapy to get Anna where she should be academically, Susan asked for a copy of the official reports everyone had conducted to be sent to her before the IEP meeting was scheduled.  This way she wouldn’t be thumbing through the reports trying to read them while the educational experts were presenting them; she would instead have had time to read and digest them before having to talk about them. 

Susan also requested that, if the school had created proposed goals for Anna from all of the testing they did, she be given a copy of those as well.  Knowing that making goals would be discussed if Anna were made eligible, she made sure to ask for them at least 5 days before the meeting to be able to decipher the language and look up anything that she may not completely understand. 

On the day of the IEP meeting, Susan sat at the head of the conference room table and waited for the rest of the team to be settled in their seats.  Each person went around the table introducing themselves.  Susan had already met most of the group and was ready to find out what they were going to tell her.  The vice principal, acting as the LEA representative, welcomed everyone while the speech therapist prepared to take the official meeting notes.  Susan, also planning on taking notes, asked that the meeting be recorded on her hand-held audio recorder because her husband was unable to attend the meeting. The district LEA agreed to it, and the meeting started. 

After each of the team members who tested Anna had a chance to report on their findings, it was determined that Anna did have significant developmental delays and that they did indeed warrant special education.  Since she was also behind with both speech and language and fine motor skills, Anna was also found eligible to receive related services (speech and occupational therapy).  Not completely surprised, but now full of even more questions, Susan discovered she would actually be invited to another IEP meeting, a meeting immediately following this determination meeting.  Before it was to begin though, Susan was asked to sign the determination paperwork allowing the school to start the next step:  creating Anna’s individualized education plan. 

By signing the document, Susan agreed that Anna was eligible for services.  Susan was nervous, but remained hopeful that the school would continue to guide her in the process to get Anna the appropriate education she needed.  She was ready to continue the process, so Susan signed the invitation to attend the next IEP meeting, which was to start in minutes, while still sitting at the table.

The meeting, which would cover how the school district would provide the services and supports Anna needed, began right away.  Since creating the actual plan that would be unique to Anna’s needs and would also describe the specific services the school would offer, the team had to brainstorm ideas, discuss strategies and work together.  They got started right away.

---

Once the evaluation is complete, special education determination decided and signatures acquired, another IEP meeting will be scheduled.  Many topics will be discussed at this and all future IEP meetings.  Educational, therapeutic and social skills goals, among others, have to be created.  Duration of and placement for a child’s specific services must also be addressed.  All involved in the plan contribute a great deal of information to an IEP meeting. 

As meetings can be long, parents should be prepared to spend half a morning, or afternoon depending on when they are scheduled, in discussion.  Some parents will bring snacks when an IEP is scheduled.  Others don’t as they keep a more managerial-style approach to the table.  They instead stay focused on the business at hand.  They see themselves as lead manager of their child’s education collaborating with school experts to create an appropriate educational plan designed to carry their child through their academic career.  Knowing what to bring to a meeting, how to present oneself and how and why parents should document everything that is shared with them, will take practice.  So will knowing the key points frequently discussed at IEP meetings.  Those include: 

-That the child is eligible to receive special education and related services

-That FAPE must be provided

-That accessing the General Education has been considered

-That the Least Restrictive Environment (LRE) has been taken into account

-That potential accommodation and modifications are reviewed

-That appropriate placement—either through the public school or in a private school setting--is discussed

-That goals are always measurable, objective (not subjective) and use the child’s strengths to improve their weaknesses

-That inclusion, whenever possible (and not just during specials or recess), is the an option so that every special education student can be educated alongside their typical peers

Throughout the process, as daunting as it might feel, parents will be asked for their input.  From identifying the initial concerns to getting services started, and in the future changed as a child reaches their goals, parents will also be asked to give their consent.  So that a parent can be fully informed, requesting documents the school will share at meetings is important to get prior to the meeting.  Reviewing helpful websites, reading current trends in special education law and asking question until all are answered to the parent’s desire can help one successfully navigate through the system. 

---

Because of the information a parent has to consider, learning the basics, and also the intricacies of the IEP process, is important.  Parents can become experts for their child when they understand what is being planned, said and proposed for their child.  Susan was quickly learning in these first two meetings that she needed to know a lot more than she expected. 

Despite some of the unknowns, Susan was pleased with initial outcome of her first step into the special education world.  Surprised at how much goes into the meeting, Susan knew she’d be devoting time to become more familiar with the IEP process.  She also made a note that she had to learn the language better (like common IEP lingo such as 504 Plan, LEA, OT, SLP, PT, Gatekeeper, Gen Ed, Spec Ed, DD, MR, AU, PWN, IDEA, group setting, 1:1; objective, subjective; measurable).  She knew that would only benefit her when the team reconvened. 

By the end of the meeting, Anna’s team created goals in the areas that she struggled:  academic (to include math and reading), social and also speech and OT, which were part of related services.  They had reviewed Anna’s Present Level of Performance (PLOP), considered her strengths while accounting for her weaknesses and made sure each goal was objective as well as having measureable benchmarks.  They’d also decided where Anna would receive those services, for how long and who would be providing them. 

Also reviewed was how Susan and her husband would be notified of Anna’s progress.  Since Anna wasn’t capable of writing yet, Susan requested a communication log be used to track Anna’s daily activities.  They would record Anna’s behavior, when she had therapy and how her day went overall.  Since Anna couldn’t write yet and had already become withdrawn not wanting to share any of her school day news, Susan appreciated having access to how her daughter’s day was. 

Susan was astounded at all that went into this meeting and at how many documents and forms it took to track everything discussed.  Once the IEP meeting was over and the forms signed stating that Susan was in agreement with the district to implement the services, Anna would began working on the goals the team created. 

With that meeting done, Susan took time to go back and read more about the special education process and to familiarize herself with her district’s program.  In her search to know more about the program, Susan found a mentor through the special education parent advisory panel.  She set up a meeting with the mentor having a full list of questions to ask her. 

Susan was happy to find another parent who was a few steps ahead of her in the special education process.  The mentor walked her through what future meetings might be like, including the triennial meeting and a transitional meeting, which would occur when Anna heading to middle school.  Susan discovered that a meeting can be called at any time—by the school or by the parents, and can even be called and scheduled during the summer. 

Before Susan left, the mentor loaned Susan some books, promised to add her to the groups’ email list and said she’d be happy to sit with her at any IEP meetings that Susan’s husband wasn’t able to attend.  Susan knew other parents didn’t have as easy an experience as she did in getting Anna’s IEP started.  She was going to do what she could to keep the lines of communication open with the school, and not just with Miss Taylor, who she saw every day in the car pool line, but with the other members of the team she might only see at IEP meetings. 

Armed with more information, and while getting a better understanding of how the system worked, Susan knew it was still going to take effort to keep up with Anna’s needs.  She knew it would take time to get used to the changes, but was at the same time grateful that in identifying Anna’s delays, a team of people were readily able to address them.  With time, through her own research and by communicating with the team, Susan felt confident that she would be the captain of Anna’s IEP team.  That, and keeping positive, was what Anna needed Susan to be. 

Helpful Links

NCLD http://ncld.org/  

NYCHY http://nichcy.org/

IDEA  http://idea.ed.gov/

Wrightslaw.com http://www.wrightslaw.com

When it Takes More than a Team: when a parent has to navigate through the nitty gritty

What if, after following the many steps to create an IEP, your child fails to make progress?  Or, your school district hasn’t followed the procedural guidelines?  Or, an evaluation the district conducted is inaccurate or was not done by a highly qualified person?  Or, the therapy promised in the IEP hasn’t been delivered? 

Not every IEP meeting experience is going to have a happy ending.  Nor will every child’s school experience be a positive one.

What’s a parent to do? 

Depending upon which issue they’ve run into, parents have several options. 

-For the issues that might be more manageable but require a more-adept person to guide them through the myriad of paperwork, a parent might benefit from hiring an advocate.  Look to your local special education support group or special education advisory committee for your district for recommendations. 

-If it’s a procedural safeguard that’s been violated, a parent could be well within their rights to file a complaint at the state level.  Specific steps and documentation is necessary for this step, so review your state’s guidelines on how to do this.

-If it’s a testing issue that contributed to your child not getting the services they need, asking for an IEE (Individual Education Evaluation), funded of course at district’s expense, could help resolve this. 

-Or, if the problem is so great and the parent has already followed every step and gotten nowhere for too long trying to resolve the issue, filing due process is an option.  This is one of the most costly—both in time, money and emotions—but, parents have been successful in taking their concerns to the courts in order to get their child the appropriate education they deserve.

A parent’s role is as important as every person around the IEP team table.  In fact, it’s the most important as a parent knows their child better than anyone else.  Parents, once they recognize their child needs more support, need to get familiar with the law because it’s on their side.  A child can get educational and related services support at no cost when parents are the captain of the IEP team and know their role.  Know the law, the procedure and the safeguards, speak up, sign documents only when you are in full agreement, keep communication lines open, continue to research, don’t be afraid to ask questions and always keep your child’s strengths and abilities in the forefront of your mind. 

Your Special Education Rights: What Your District Isn't Telling You.

By Jennifer Laviano and Julie Swanson

The definitive guide for parents of children with disabilities is out.
This book is authored by two special education experts and draws on decades of experience from the front lines of special education advocacy.

The authors, Jennifer Laviano and Julie Swanson, detail a strong, practical, and results oriented perspective that helps parents cut through the fog of special education to get the services their children deserve.

"Our bottom line is parents are often ineffective at advocating for their child because they don't know their rights," said Jennifer Laviano, co-author and special education attorney. "We see it time and again: The child doesn't get what he or she needs because the parents don't know what they don't know.

"God, faith, family. It's part of who we are."

By Cathy Jameson

Once a month, my husband and I have been able to meet up for the evening Mass while one of the siblings keeps an eye on Ronan.  We turn that time into a date night, sometimes afterward actually going on a date.  We go to church and then stop in a favorite restaurant on the way home.  The last few times we’ve been able to meet up for Mass, we have called the kids on the way home and asked them to join us for dinner.  Even though that time had been reserved for just us, I love having the family altogether on our date. 

--

Last week, we juggled a few events while our older kids came home from college.  When we know we’ll be busy all day long on Saturday and through most of the day on Sunday, we plan as much ahead as possible.  That includes deciding when we’ll go to church.  Church comes first, it always has, even when we have a lot of things to get to. 

Knowing we’d be here, there, and everywhere, we discussed who would go to which Mass and where.  Some could go Saturday night, others wanted to go Sunday morning.  Some could go to our local church while others could go to the one day the road.  We ended up splitting up, as usual – some went Sunday morning while others of us went to the very late 7pm Sunday evening Mass. 

We have the luxury of going to 3 different churches, 4 actually, but we know Ronan doesn’t like to go to the 4^th church.  The one we chose has 3 different areas where we could keep Ronan as comfortable and quiet as possible.  He’s not usually loud in church, but he will stand up mid-way through the readings and want to leave.  At this church’s evening Mass, we see a few other families with special needs adult children.  We fit right in, so it’s a nice option when Ronan has the energy to join us.

Here, Ronan is used to sitting in the very, very back in the cry room.  It isn’t a big room, the pews are really close together, and when the air conditioner is off, it sometimes smells like mashed Cheerios and dirty carpet.  Most of the time, it’s just one other family who takes up residence in there with us.  Nodding or smiling that they recognize that Ronan is much older than their baby or toddler, we find a spot on one of the cramped pews and sit together.  Last Sunday night, we were surprised to see a large family with typical teenagers and young adults taking up 2 of the 3 pews.  At first, I didn’t know if these kids were truly typical, but by the end of Mass, they proved that they were the teens I try to avoid in quiet spaces.  They took out their phones, they talked to each other, they poked each other during the Consecration, and they tried to make each other laugh at other solemn part of the Mass. 

Two other families ended up joining us when their toddlers got too chatty in the main part of the church.  Those two other families had every right to be in the cry room, but man, did they add to the distractions!  Ronan picked up on just how loud and busy these two other children were.  I was so surprised because he doesn’t usually take note or stare at strangers like he was doing.  Our youngest daughter was with us, and she did an amazing job keeping Ronan focused by pointing to where we were in the missalette. 

By the end of Mass, I was more than a little frustrated – not at Ronan!  I was frustrated at these seemingly typical adults who did their very best to not participate in the most sacred hour of the week.  One hour.  They wouldn’t focus.  One hour.  They didn’t sing.  One hour.  They didn’t respond to the prayers or the readings.  One hour.  They couldn’t sit still.  One hour.  They almost ruined things for me.  But I wouldn’t let them because each time they fooled around, or knowingly distracted each other, Ronan remained focused.  He remained seated without wiggling.  He stayed next to us without trying to leave like he usually wants to.  Ronan went, attended to, and even participated in the Mass.  It has been a long time that he has been able to do that.  And he did it better than those teens, young adults and their parents.  Can I please get an amen! 

After receiving communion, we opted to stay in the narthex and not return to the cry room.  It was just too overwhelming and distracting.  Ronan indicated that he was ready to go at that point, too, so we said our after-communion reflections and tip toed out.  As usual, we stopped in our favorite restaurant for dinner, gobbled up some chips and salsa, and enjoyed some fun, family conversation at the table.

This weekend will be as busy as last weekend was for us.  We have a sporting event, haircuts scheduled, projects and homework to finish, a birthday party to get to, and time to spend with one of the kids who’s coming home from college again—we Jamesons will be hopping!  We’ll plan ahead on who’s going where and to which Mass first.  God, faith, family…it’s part of who we are, and I’m so glad that Ronan could be part of that faith bit for one hour with us last weekend.

Cathy Jameson is a Contributing Editor for Age of Autism.

###

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By Cathy Jameson

Years ago, I used to be on all sorts of social media sites, but the time I spent on those sites ended up bringing a lot of noise and distraction to me.  My focus would be better served elsewhere, so one by one I deleted accounts.  I limit myself to just facebook now and only with a few close family and friends these days.  Someday I may jump ship off of FB, but not yet.  I’m still hooked on the interactions and the memories.  Oh, the memories!

I’ve referenced the On This Day memories feature before.  Like previous times, something I saw on it last week made me pause and reflect.  Usually, the memory is still somewhat fresh, but I’ll be honest.  I don’t remember this post at all.

Thank you to our friends and family who are so totally awesome. Each and every one of you...you with the loud voices, you whispering a kind word, you hanging in the back waiting for the right moment to lend a hand, thank you. I heard this on the way home yesterday; it was a great message at just the right moment. Then I linked a song that had a great message. 

By Cathy Jameson

Developmental milestones are important to monitor, especially when a child is showing signs of delay.  The checklist I would have referenced for my son’s development would’ve been the one from 2004.  The CDC changed the checklist in 2022.  I haven’t discovered why yet, but people are talking about the 2022 changes again.

I saw this Facebook post shared by a longtime Age of Autism reader mid-week. 

I then found this recent video at the end of the week – the topic was also about the developmental surveillance milestone checklist from 2022.  

I’m part of a team that works with young children which includes observing and assessing their development.  Working mostly with typically developing children, developmental milestones are a big part of what I focus on when I evaluate their abilities in the natural setting.  Years of personal research, as well as research I did back in college, contribute to the knowledge I bring to the program.  Some parents are grateful for my insight when I share reports while others are not ready to hear what I see their child doing or not doing.  My heart goes out to those parents because many years ago, I was once in their shoes. 

Knowledge is power, though, so I work to build a relationship with the parents to help them understand what we report to them and how that information affects their child’s education.  I’m not part of a medical team, but it was good to review that second video as I gear up some initial assessments.  In that video, I was reminded of the steps my son’s team had to take.  That included recalling that pediatricians are recommended to complete a developmental surveillance – which is a screening done at every well-child visit.  At those visits, doctors will:

1 review monitoring checklist and the child’s history

2 ask about concerns

By Cathy Jameson

Like for other families, it can take weeks, if not months, of planning to get an appointment scheduled with a specialist.  Our specialists are pretty helpful and very respectful, so it’s usually worth the wait.  Sometimes, it’s not because of their busy schedules that have us waiting; sometimes it’s something else that causes a delay. 

The reason for our latest specialist’s visit is because for a while, Ronan has been experiencing something beyond his usual neurological issues.  We communicated this with our doctor telling her what we were observing and what strategies we were using to keep Ronan comfortable during the episodes.  When these weren’t just happening every so often anymore, we knew we needed to do more than just inform her of what was going on.  Rather quickly, our usual quick convos turned into lengthy discussions.  I appreciated her swift replies and how I could share more than just facts with her.  Our concern was growing, and she could sense that.  With how unusual things were becoming, we asked for testing.  Our doctor agreed that it was time that something more needed to be done for Ronan.   

We had everything set up for the big day:  Time off from work.  Bags packed.  Hotel room booked.  Since it was an early morning appointment, we wanted to be within minutes of the testing site, not have to drive the almost 2-hour trip there the morning of.  With everything ready, and with our youngest staying with a close friend while we were away, we got on the road. 

Getting into town the night before was one strategy that worked in our favor.  What we didn’t factor in was Ronan’s sensory defensiveness during the much-anticipated appointment.  No matter what we tried, he could not get through the procedure.

We tried everything.    

Oh, we tried. 

And we tried again.

But Ronan couldn’t cooperate.  Sensory issues.  Fear.  Adamant refusal.  It all kept us from being successful with the testing.  I was crushed because we’d waited so long to get to this day, to this appointment, to the possibility of a solid answer of what was happening.  

The provider who worked with us gave us some options. 

But it’s another sit and wait for everything to align for us to try, try again. 

I’m usually a perpetually hopeful person.  Friday, I wasn’t.  And it made me so sad to walk away.  It doesn’t take just a few days to get things scheduled. 

It takes time. 

Our medical team will come up with another plan for us soon, though, so I know that I will find hope again.  Until then, I pray that we can continue to comfort Ronan during whatever these episodes are.  I’d love it if you could pray with us, too. 

Cathy Jameson is a Contributing Editor for Age of Autism.

By Cathy Jameson

Remember when… that’s the name of an online page I like to visit.  It’s full of memories from a small town where I used to live a long time ago.  Many of the topics are of the original settlers to the area and their descendants.  I’ve learned about which families came first, which businesses they opened, and which ones still exist decades and decades later.  Even though I only lived there for 4 years, this place will always have a very special place in my heart.  I cherish friendships made and am very grateful to still be in contact with friends so many years later. 

Being a military brat, I’d get to know the people and the surrounding places we’d move to, and then a few years later, we’d move miles and miles away.  That was life, and it’s all I knew.  I love getting to peek at the past in these Remember when… stories because many of the original families, too, traveled a great distance to set up residence.  The difference is that they never left. 

Some of the recent photos that were recently shared on the page are of the original town library, the original school, some of the first teachers, one whose name now adorns a new multi-level, multi-grade, tech savvy building.  Last week someone shared photos of what the original playgrounds included - swings, a very tall metal slide, and an intricate set of monkey bars that would likely never be allowed on certain properties these days.  

I remember when I used to play at those kinds of playgrounds, when I walked to those smaller schools, and when there were truly only a handful of students who needed educational supports.  These days, so much more support seems to be required, and not just at school.  We see that being offered in grocery stores, shopping centers and movie theatres in the form of sensory-friendly activities, with recognizing emotional support animals, and with the addition of para-professional assistance.  I’m not saying any of that is a terrible thing; it’s that it’s increased astronomically since I was a kid playing on death-defying playgrounds in small towns in the south.

I remember when kids had more time to just be a kid and to explore. 

I remember when teachers only had to teach those kids, not teach to a test, as some most, while fearing for their lives because of school violence.  

I remember when doctors were respected and worked with parents, not against them as I experienced when my children were younger.

I remember when things were so much simpler!  Of course, I was a child when things were really
simple.  Times have really changed across-the-board and in so many aspects since then.  It’s good to talk about what we remember, which is why I love logging in and seeing new posts on Remember when…

 It’s good to see the past and to also yearn for it. 

It’s good to see who the pioneers were. 

It’s good to know their stories and to want to honor their lives and their work ethic. 

We each have our own stories, and many have shared their own Remember when… stories here.  They’ve written about what was and what changed.  That’s what brought me here and why I still share bits and pieces of what life was like for us before Ronan got sick and what life is like for him now. 

What brings you here?  What brings you back each week?  Is it something that makes you Remember when…?  I hope whatever the reason may be is one that gives you hope, peace and maybe a little bit of happiness.

Cathy Jameson is a Contributing Editor for Age of Autism. 

###

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Anthony Fauci seems to have not considered that his unprecedented quarantine of the healthy would kill far more people than COVID, obliterate the global economy, plunge millions into poverty and bankruptcy, and grievously wound constitutional democracy globally.

Note: Cathy's "Littlest Pickle" is off to college this weekend, so we're running a Best of."

By Cathy Jameson

As we make plans for a family getaway this summer, I realized that I never shared what we did on our family vacation from last year.  After months of planning, we took the kids with a two-week vacation to the Pacific Northwest. 

Since I love surprises, we didn’t tell the kids where we were going until we were on the plane.  They guessed and guessed and guessed all sorts of fun places we might go.  Little Buddy guessed correctly that we were going to Washington state.  It wasn’t an easy trip to plan, but it was one of the neatest ones we have been able to go on as a family.  From one coast to the other, with all seven of us traveling, our trip was quite the adventure. 

TGIF: Toes Go In First…even if the water was only 55 degrees!

Plan, Plan, and Then Plan Some More

On any given day when Ronan and I leave the house, I plan ahead.  I think about how long we’ll be out of the house and pack what I think we may need.  That includes diapers, wipes, snacks, and a change of clothes, seizure meds, and emergency seizure meds.  It isn’t much to carry around, but those essentials must come with us. 

I knew that we’d need to bring a lot more than those few items on a cross-country trip.  Planning for the trip and for the length of time we’d be gone took months.  I had to think about so many things.

The travel aspect – Ronan hasn’t been on an airplane since 2007.  A million questions went through my mind as I thought about our trip.  Would he board the flight willingly?  Would he stay calm on the flight?  Would the flight crew understand autism?  What if we run into delays – what can we do/bring to help Ronan handle that?  What if we had a medical emergency en route?  How would we manage that?  Not being able to do a practice run at an airport in our area, I knew that we’d be winging it and that we’d have to plan for every possible scenario and hope for the best.

by Cathy Jameson

I promise you that I would never have gone grocery shopping had I known what was to come.  I was just getting a little bored and needed to get out of the house for a bit.  Even though it was almost dinner time, I loaded up two of the kids and headed to Costco to restock some bulk items.  

Ronan had dealt with some odd episodes that morning, which kept my focus on him all afternoon.  Besides that, we don’t have cable, and I’d stayed off of the news sites the rest of the day.  I didn’t miss any of the political updates and other stories from around the world.  But I did miss that we were under some severe weather watches. 

On the way to the store, it started to sprinkle.  Light grey clouds had filled the sky all day, but nothing seemed too unusual to me.  Costco was so busy that I couldn’t hear that the clouds had unleashed buckets and buckets of rain while we were in the store.  Not until we got closer to the exit did I see just how messy it looked outside.  Rain was coming down so hard, and it was much darker than I thought it would be – how long were we shopping?? 

We weren’t really in there that long, but we were inside when the weather reports went from we’re under a tornado watch to a tornado warning.

I saw a similar image 2 years ago – it’s genius!

Still, I had no idea we were even under a watch.  I had given up listening to the car radio during Lent several months ago.  I keep it off after Lent turning that quiet driving time into prayer time.  Prayers help me get through some tough moments and through disappointing news.  Prayers would be most welcomed as we not only got caught in a deluge in the parking lot with Ronan in his bulky adaptive stroller.  They’d help get us home through the tornado that was looming in the area.

Running through puddles, juggling the rain-soaked groceries, and then helping Ronan navigate through the rain kept my heart rate up.  Ronan and his youngest sister and I were soaked!  None of us were wearing jackets because none of us expected the torrential downpour, so the drive home in our wet clothes would be a tad uncomfortable.  That didn’t dampen our spirits too much as we were looking forward to being back at the house, ready to try some of the new treats I’d bought.     

While the two kids sat in the back, I turned to my usual prayer routine as I turned onto the highway.  Happy for that quiet time again, I focused on the road.  With just how much rain we were still getting, though, I thought I should probably turn on the radio.  The clouds were getting darker and also a little bit lower.  I found the local station and hoped for a weather report.  I didn’t have to wait too long.

“If you’re on this section of the highway…seek shelter now.  A funnel has been sighted.”  

OH GEEZ!  We had just passed that section of the highway! 

No wonder it looked so ominous out there. 

We’ve driven through tornadic activity before, and holy moley, it’s quite scary.  Every few months we talk about emergency weather plans, but we’ve been blessed with mostly mild weather since the winter and haven’t had those weather convos.  Spring saw some thunderstorms, and it’s been hot and humid all summer, which is not terribly unusual.  We don’t see too many tornados, and would I ever plan to be driving near one if I can help it!  So, I shared a quick lesson with my daughter on what we’d need to do if the tornado, which had touched down right after that new report, was moving in the same direction we were.  That included how we’d have to get Ronan to cooperate with us.  He can be an easy-going kid.  But when he doesn’t want to do something, it can take some creativity on our part to get him to join us.

I wanted to make a bee line home but ended up driving slower than I normally would due to the flooding on the roads.  Once home, we got a battery powered radio on as soon as the groceries were unloaded.  The storms lingered south of us, thankfully.  Even so, we kept the radio on and also looked up what the forecast was for the next few hours.  The weather would continue to be severe in areas close to us, which meant we could experience potential flooding as well as potential tornados.  Before bedtime, we talked about a plan – for the girls, me and Ronan’s sisters – if weather turns, we immediately get to the safe spot in the house.  For the boys, my husband and Ronan’s younger brother – they immediately get Ronan out of bed because he will need to be picked up and taken to the safe spot in the house. 

I don’t like to imagine what could happen during an emergency situation when we’d have to book it out of somewhere quickly.  I especially don’t like to imagine what could happen to Ronan if we can’t get to him or if he refuses to follow directions.  We’ve had a few emergencies to handle, with most of them taken care of timely.  A tornado, though?  I’ve heard those happen faster than one expects, and I know they cause a great amount of destruction instantly.  

Our weather emergency plan fortunately didn’t need to be acted on that night.  The rain subsided at some point while we were sleeping, and our area stayed out of the fray.  Others were not so lucky, but I read that neighbors rallied to help remove storm debris.  We’re grateful to be safe and sound and will hope for that again when the next storm rolls through.

Cathy Jameson is a Contributing Editor for Age of Autism.

###

Get to know The Real Anthony Fauci in this #1 best seller from Skyhorse Publishing.


Real Anthony Fauci: Bill Gates, Big Pharma, and the Global War on Democracy and Public Health

Anthony Fauci seems to have not considered that his unprecedented quarantine of the healthy would kill far more people than COVID, obliterate the global economy, plunge millions into poverty and bankruptcy, and grievously wound constitutional democracy globally.

Woe to You

By Cathy Jameson

The kids had had the opportunity to go out of town together, but when those plans changed, I thought of a few things for us to do in town.  We had a full afternoon of fun planned.  Our day would start with no appointments and no helpers helping us that day.  I love our helpers, but with no helpers coming over, we’d all be able to sleep in. 

Sleeping in is a treat, but you can’t sleep in if you don’t stay asleep.  Ronan decided to not sleep through the night on Wednesday night, so I cat napped through the night instead.  The relaxing start to my day didn’t happen.  It started with a jolt.  Like when he was a baby, I can tell when Ronan’s ‘happy noises unto the Lord’ are not so happy and that he needs help.  Around 1am and over the next few hours, he’d squawk out a round of laughter.  My eyes would open widely, my ears would listen intently, then my brain would settle knowing that he was okay. 

When the sun was just creeping up, Ronan got louder, and I could no longer cat nap.  I was now as wide awake as he was.  Ronan is usually content to read his books and look at his pictures, similar to the ones Kim mentioned in her recent post.  But that morning he was raring to go and was as happy as could be.  He was a little unsettled in finding a cozy spot, something he finds once he’s used the bathroom.  That morning, when one couch wouldn’t do, he’d get up and go to a different couch.  When one Wii game wasn’t keeping his attention, another one was attempted.  He’d been a little bit agitated the day before, but this was different.  After a few minutes, he finally settled himself on the brown sectional in the den.  With how content he finally was, I curled up on the other end of the couch and caught another cat nap. 

I’m convinced I never fully sleep.  I’m sure I didn’t that morning because before I woke up, I could tell something was wrong.  Jolted awake to noises that were not coming from where I knew Ronan had been sitting, I saw that he had just gone down on all fours on the floor.  Oh, no!  The last few times he’s done that is because of seizure activity.  I quickly got up, picked him up and walked him toward the other couch, the black one in the living room.  He had pointed in that direction, so that’s where we went.  With wobbly legs, as if he was standing on a boat being rocked by waves, we made our way through the house to the other room. 

Once seated, Ronan’s head turned quickly.  Then his eyes went blank.  The eyelids did some fluttering.  Then he jerked his head again looking up at something even though nothing was there.  Damn it!  Seizures.

The kind he’s experiencing lately have gotten more intense.  As absolutely horrible as they are, I am thankful that Ronan can feel them coming on.  He knows to find a cozy spot or to find me when they begin.  The last 3 times, I’ve happened to be home – with nothing on my schedule, when they started. 

This cluster was quick and took his energy away.  Once they were finished, he started to sleep it off.  It was only 8:30, way too early for us to be heading out.  The kids weren’t even close to being awake yet anyway, but if he bounced back, maybe we’d be able to do something later.  He had bounced back those other times, but I’d have to wait and see how he was feeling to know our options. 

The kids started to wake up around 10am.  

“Shhh, tiptoe.  Ronan’s had quite a day already…”  Understanding, they were quiet so that Ronan could continue to sleep.   One, two, three, four hours went by.  Ronan was up for a stretch between 11 and 12, but he stayed in bed under covers through the early afternoon. 

It wasn’t as quick as previous times, but Ronan rallied, and the kids graciously helped him as he stirred.  Earlier, we looked at what we might still be able to do.  We’d have to skip one thing, but we could go to Ronan’s favorite store and also grab a quick dinner out.  I’d promised the kids that they could go to the movies after our fun day out – but they’d be going without me since the movie was a psychological thriller with some jump scares.  They gave me a pass since they know I’m a big ol’ scaredy cat who doesn’t like those kinds of movies. 

If we timed our outing just right, I could still take the kids shopping and also get them to the theatre on time.  It was later than we expected to leave, but with Ronan, we made it out of the house for some fun, some food and for that early evening showing.  The kids were all smiles that night, Ronan, too.  I was beyond thankful for that. 

Each evening this summer, we’ve been reading the Bible.  That started because Ronan’s younger brother and I had wanted to do one study of one book of the Bible together.  We’ve read five books and have included the whole family in the study.  We sometimes simply read through the chapters, and other times we will stop and discuss the message.  The discussions are short but very worthwhile.  I’m also finding that oftentimes, the messages from the readings have been not so random to events we’ve witnessed or are dealing with.   

Since our schedules can still be somewhat all over the place, even though it’s summer, we facetime with whoever isn’t home.  We had been doing our family prayer time around 9:30, but if we didn’t set a timer, it would be almost 10pm before we opened the Bibles.  Readings got delayed, bedtime got delayed, and by the time everyone was tucked in, we were up way too late.  So, we were gathering an hour earlier.  That night, even though I’d caught another nap while Ronan slept after the seizures, I was ready for bed already, but it was 8:30…ring…ring…we were all on screen and we were ready. 

With everyone on, we began.  First the Psalm, then the next chapter in Matthew.  It was my turn to read Matthew 23:    

…Call no one on earth your father;

you have but one Father in heaven.

Do not be called ‘Master’;

you have but one master, the Messiah.

The greatest among you must be your servant.

Whoever exalts himself will be humbled;

but whoever humbles himself will be exhausted.

I stopped myself. 

I mean exalted! 

…but whoever humbles himself will be exalted.

I was so, so tired, so ridiculously tired, but I started laughing.  Then I couldn’t stop laughing.  It was one of those punch-drunk kinds of laughs that made everyone else start to laugh.  When I caught my breath, I continued to read.  The rest of the chapter were messages to the Pharisees …woe to you, you hypocrites…on the outside you appear righteous, but inside you are filled with hypocrisy and evildoing…you serpents, you brood of vipers, how can you flee from the judgment… Those verses brought me back to some of the emotions I felt earlier in the day – anger, regret, sadness knowing that some of my child’s issues could’ve been prevented.  Many I time I felt…woe to those providers who stood in my way to keep my child healthy. 

It’s exhausting this parenting thing!  I struggled that entire day.  How do I parent Ronan and the kids at the same time?  How do I parent them and also take care of me?  Some days, most days, I come last – that’s part of parenting, and that’s been okay.  With the kids’ help that day, I stepped away from Ronan while he was sleeping so I could finally take a shower.  I grabbed a quick bite to eat also, but I was back in his room as fast as I could.  When he was fast asleep, I sat in the hallway right outside his room.  I stayed there until he woke up.  The kids kept themselves busy and hopeful all day – we all wanted Ronan to be well again.  Holding onto hope and our plans, we all wanted him to join us if we got to go out, too. 

They’re older now, and the kids can surely take care of themselves.  But that day, they wanted me to be with them.  We’d made plans to be together.  We’d made plans to bring Ronan with us.  We made plans to have fun out of the house.  If there’s one thing they’ve learned the last few years it’s that we have to be flexible.  Being flexible paid off this time.    

That night, we prayed thankful prayers that Ronan was feeling better.  We prayed for a better day tomorrow as well.  I prayed for the kids, for our family and for some special intentions.  Prayers help see me through.  Lately, I’ve been leaning on them more than I ever have before.  Til my fears are gone…to remember that He’s leading me…and to always remain hopeful. 

Cathy Jameson is a Contributing Editor for Age of Autism.

https://www.youtube.com/watch?v=WW0VJxPqeRc

###

Get to know The Real Anthony Fauci in this #1 best seller from Skyhorse Publishing.


Real Anthony Fauci: Bill Gates, Big Pharma, and the Global War on Democracy and Public Health

Anthony Fauci seems to have not considered that his unprecedented quarantine of the healthy would kill far more people than COVID, obliterate the global economy, plunge millions into poverty and bankruptcy, and grievously wound constitutional democracy globally.

By Cathy Jameson

I offered to work a yard sale last week.  It would potentially be a pretty big event and would help the organization create some much-needed storage space.  Lots of books, boxes of school supplies, more than a handful of knick knacks and other items could be sold.  We had tons of gently used items, some brand new with tags and a few electronics, too.  I have only had one yard sale of my own and had forgotten how much work goes into it.  It’s a lot of work!  The time it took to sort through everything, tag everything, set up everything and then sell everything took days.  I was happy to help though.  We met and exceeded the goal of how much I had hoped to make, and we got rid of tons of items that were no longer needed. 

My Blockbuster card, which I still have.

Several big-dollar items were donated to the sale, which
made me wonder if I had anything at home that I could contribute also.  As I got piles and piles of things sorted one afternoon, I recalled a pile of things in a large box I had sitting in my house.  I told my youngest, who’d joined me a few times to help us prep, that I’d go through our VHS movie collection and see if we had anything worth donating.  I promised her that I would not give away any of our favorites.  Easily, that box had 50 movies, some we’d bought and watched, and others gifted to us by neighbors before they moved. 

Picking out 5 movies I knew the kids wouldn’t miss, I then remembered we had two drawers full of children’s movies in an old dresser.  These would be harder to part with.  I recalled the happiest of memories of when kids watched those together.  Others were just classic kids’ shows or movies that I wasn’t ready to give away.  Veggie Tales, Blue’s Clues, Kidsongs, and the older (and much better) Sesame Street videos…these are ‘the classics’ that my kids grew up watching.  Even if they didn’t want to pop them in the VCR anytime soon, I didn’t have the heart to donate them.  What I’d rather do is see if a family in our community needs them. 

Years ago, a dear friend in California posted that her friend was looking for particular Barney movies.  The friend’s adult daughter with autism loved Barney, but only when it was produced during a certain timeframe.  The newer shows would not do, it had to be one of the older ones and on DVD.  Sharing details, I jotted down the years this young woman’s favorite episodes came out and went hunting for them at the thrift store.  I love a good thrifting day, and I especially love helping another mama.  As luck would have it, I found a DVD that fit the bill!  I was so excited.  My friend was excited also, and her friend was grateful.  On other trips to the thrift store, I’d find more DVDs.  I didn’t think twice – in my cart and then mailed across the country each disc would go.

By Cathy Jameson

It didn’t matter that we’d made an appointment.  The DMV was running behind.  35 minutes behind.  I’d specifically booked an appointment mid-week because I didn’t know if Ronan would tolerate the noise, the busy-ness, or the potentially long time we’d be there.  Booking that appointment would assure me that we’d be in and out faster than usual. 

Or so I thought. 

We only had one quick transaction to take care of that afternoon.  Once we stepped foot into the building, I knew there would be nothing quick about our visit.  People everyone.  Kids everywhere.  Noise everywhere.  I’d never seen this DMV as busy and chaotic as it was.  One never knows how long state government appointments run, but past history told me we’d be there for some time. 

I wasn’t wrong.  

Ronan took all of it in stride.  His little brother, who now towers over him by almost a foot, joined us.  I thanked the Lord that he was there and that Ronan had been there before with me and his siblings several times over the years.  When the kids were old enough to get their licenses, when we had to renew registration or get new plates for new vehicles, Ronan’s weathered the mind-numbing bland state-run office more times than he probably wanted to.  When I could get someone to stay home with him, I’d still want to go to the DMV and be done  there as soon as possible. 

Time seems to stand still in places like this.  

This time, though, the appointment was for Ronan, so he had to go.  I’d put off getting a photo identification card for Ronan for a long time, but several places we go require a photo ID.  His passport works great and is still valid.  I just don’t want to risk losing it when we go out.  One of our providers recommended we get a state ID, which made sense.  One thing on the form didn’t make sense and that was opting Ronan into the Selective Service.

I couldn’t opt him out. 

I’d read that other parents have dealt with this and that it’s stirred up several emotions.  Sadness is the biggest emotion that overcomes them as they ponder the ‘what ifs’.  Their child, like mine, cannot serve in the military.  

What if my son wasn’t disabled…could he have served?  

Fit for duty?  There’s no way. 

I’ve already had to fight for him throughout his entire childhood, and now I have to put my dukes it all over again.

Some of us are tired of the fight and are concentrating on quality of life for our adult sons.  I know the lady at the DMV didn’t want to hear Ronan’s story, but as Ronan’s mom, it’s my responsibility to continue to tell it so that I can continue to help and protect him.

“Ma’am, I can’t check any of the 3 boxes in this section,” I started.  “We haven’t already registered him, he’s not a non-immigrant alien who’s not required to register, and I don’t want to authorize the DMV to forward any of this information to anyone else.  If you had a 4^th box, one that said ‘unable to serve’, that’s the box I’d check.  What do you suggest I do?”  I asked.  I knew she wouldn’t have a clue.

She was brand new and the sign at her station indicated she was still in training. 

After waiting 35 minutes for our scheduled appointment, we were randomly assigned to the one rep who had never done a state ID for an adult male with severe developmental delays.  Despite that, I smiled through the entire transaction, because I have been that new person who’s learning as she’s going. 

It’s a tough place to be when you haven’t gotten all the information yet.

I would never do anything that would jeopardize my son or our family, but I felt blindsided and frustrated that the general form made no concessions for people like my son.  Even so, I was as honest and forthcoming as possible.  It went up me sideways, but I believe that honesty is the best policy. 

So I left a note on the application instead. 

I starred the section, left some information that I thought was helpful and hoped that whichever admin would read it next would takes a few minutes to thoroughly go through the attached Guardianship letter that I had to include with the ID application.   That document tells some of Ronan’s story and lays out reasons why he cannot drive, vote or serve. 

Thankfully that document doesn’t tell the whole story because we know that Ronan can do some things…

He got through the appointment at the very loud and chaotic DMV for that photo ID he sometimes needs.  He stood still for his picture.  And he signed ‘thank you’ as we left the counter.  To get through that agonizingly long afternoon appointment was a feat!  I opted not to take him back to the DMV at the end of the week when his little sister was scheduled to take her driver’s permit test.  He’d done his time already and didn’t need to sit through any more madness again.  I’m sure we’ll be dealing with a different kind of madness when someone from the Selective Service office gets wind of my message. 

All males under the age 26 are required…

Like that new rep who hadn’t hasn’t experienced everything about her new job yet, I, too, haven’t experienced everything either.  So, it’s off to read and research, and to pray, that we’ll have exactly the right information and exactly when we need it.

Cathy Jameson is a Contributing Editor for Age of Autism.

###

Get to know The Real Anthony Fauci in this #1 best seller from Skyhorse Publishing.


Real Anthony Fauci: Bill Gates, Big Pharma, and the Global War on Democracy and Public Health

Anthony Fauci seems to have not considered that his unprecedented quarantine of the healthy would kill far more people than COVID, obliterate the global economy, plunge millions into poverty and bankruptcy, and grievously wound constitutional democracy globally.

Please hightail it over to the National Autism Association for life saving information about wandering and prevention. 14 children have drowned since June. FOURTEEN.  You'll never hear the stories linked in the news because that would draw attention to the epidemic.

By Cathy Jameson

I’ve written about wandering over the years, but I will never forget the very first time that it happened. 

That day, when my husband and I realized that our non-verbal son had left the house, we immediately took off to find him.  My husband went running down the street while I went running up the street.  Nestled in a neighborhood with lots of trees and quiet backyards, we knew that Ronan could be anywhere.  After he slipped out of the house undetected, Ronan managed to cross the street.  He continued to walk away from our house and ended up in a neighbor’s backyard.  Calling for him, even though we knew Ronan couldn’t respond, we needed to find him quickly. 

Beyond that neighbor’s backyard was a lake. 

My husband heard Ronan first.  Bolting through the neighbor’s yard, he ran as fast as he could.  Even though only a few minutes had passed since we discovered that Ronan had left the house, Ronan was in the lake.  At the time, he did not know how to swim and was desperately gripping the cold and slippery piling of the neighbor’s dock.  With teeth chattering, and hair and clothing soaking wet, we were lucky to find Ronan when we did.

That day still haunts my memory.  

It was late January.  Despite the sunshine and clear skies, the temperature was below freezing.  Almost fully submerged by the time we got to him, his clothing was beginning to weigh him down.  I thank God that Ronan was wearing a bright yellow GAP fleece jacket that day – not that the fleece would keep him warm while he was under water.

That bright color clothing helped us locate him in the water. 

After getting Ronan out, we breathed a sigh of relief.  But only for a moment.  Having read that children with autism are prone to wander – and that they sometimes seek bodies of water like Ronan just had, I was terrified.  I knew we needed help and quickly to make sure this didn’t become a habit for my son.  

But first, I cried. 

Actually, I sobbed.  Once Ronan was changed and had warmed up, I crouched down in the corner of my kitchen sobbing.  I stayed there, sinking lower and lower until I was on the floor, hugging my knees.  For a long time, I couldn’t move. 

Fear paralyzed me.  

Not wanting a repeat of what just happened, we immediately looked to see what other families were doing to prevent wandering.  We installed door chimes and posted visual aids for Ronan and his siblings (stop signs) on every door that led outside.  We came up with a plan of telling each other when we were going outside and when we needed to lock the door behind us.  Those strategies helped.  Those, and knowing that we were not alone in trying to solve the potentially life-threatening situation that wandering brings, helped us a great deal. 

Parent testimonials and other parents’ advice had given us confidence to keep our child safe. 

That first wandering happened around 2006.  Ronan is still prone to wander even now in 2024, but his desire to leave the house has greatly reduced.  We still have safety protocols in place to assist us at a moment’s notice.  We do that because of one very important fact. 

It takes only a moment to leave the house undetected. 

That story of finding Ronan in the lake above was part of a testimonial I wrote several years ago.  The day I wrote it was also the day I cleaned out a hutch that we used to have.  It had beautiful woodwork and hinged doors that, when opened, reveal several compartments.  It used to house some of our electronics, but I'd been using it for storage for other things.  In it was a box of my kids' artwork that I'd saved, some medical EOBs that I need to sort through, and an extra copy of Ronan's medical records.  As I sorted through the medical records, I saw some wandering information that I had collected because for years, Ronan would go through phases of wandering. 

That day, I also found something else. 

Stuffed behind the papers was a small bright yellow fleece jacket.  It was the only article of clothing in the hutch.  It's also the only article of clothing that instantly takes my breath away.  That fleece jacket was the jacket Ronan was wearing the day we almost lost him in the lake on that freezing cold day so many years ago!  

Why save it?  

Why hold onto it?  

Why not throw it out or at least give it away?  

Why keep something that instantly reminds me of one of the worst days of my life?  The only answer I have is, I don't know.  I don't know why I saved something like that.  It's not like it brings back happy memories.  Hardly!  I remember that day so clearly – the intense emotions, the terrible worry, and the awful, awful fear.  I remember the relief and the thanks-be-to-God moment that followed once we got Ronan safely home, but it truly was the worst day of my life.  

I can only think that I saved it to remind me not that we didn’t lose Ronan that day but that we were able to save him.

Not every wandering story has a good ending, and even the ones that do have good endings are never easy to write about.  It’s been a long time since I’ve written about this topic, and it would be so much easier to write about something hopeful and happy that Ronan's done lately.  Until parents like me never have to worry about their children leaving their homes undetected, through the tears, through the pain, and through the awful, awful reminders of just how fatal wandering can be, I will continue to write about it. 

Cathy Jameson is a Contributing Editor for Age of Autism.

###

Get to know The Real Anthony Fauci in this #1 best seller from Skyhorse Publishing.

Real Anthony Fauci: Bill Gates, Big Pharma, and the Global War on Democracy and Public Health

Anthony Fauci seems to have not considered that his unprecedented quarantine of the healthy would kill far more people than COVID, obliterate the global economy, plunge millions into poverty and bankruptcy, and grievously wound constitutional democracy globally.

By Cathy Jameson

It was supposed to be a quiet Friday.  

But Ronan woke up early.  

Soon after, he started having seizures.  

We haven’t seen those in a really, really long time.  When he was having frequent seizures years ago, they had typically been subtle.  Some were big and scary, but for the most part, they were small and quick.  The ones on Friday were not so subtle and mimicked seizure activity we saw briefly back in December.  Remembering how those knocked him off his feet, I rearranged my plans Friday morning.  Sitting seizure watch and waiting for them to be over was much more important.  

I never had to use the rescue meds, thankfully, but a call to the doctor was in order once things subsided.  With how infrequently the seizures are lately, I wanted to get verification that our protocols were still valid.  A nurse answered right away when I called the neurology office.  After answering a slew of questions, my call was logged and forwarded to the attending.  Like earlier, I had to sit and wait for a reply.

The doctor called within two hours.  This isn’t his usual doctor; she’s temporarily away from the office, but another doctor we met at our last visit called me back.  Grateful that she had some history with us, she started by saying, “Hey, so sorry to hear that Ronan had a tough morning.”  It’s always encouraging to hear Ronan’s medical team start their conversations with compassion.  She then went right into his history, listing which meds he takes and when.  We talked about what we tweaked last time and what today’s seizure activity included.  What I saw was similar to what happened six months ago, but new stuff happened also. Could these be stacked seizures?  

He’d get a little break. But while sitting on the couch, clusters would come in cyclical waves. I couldn’t wait for them to be over.  He’s unable to tell me, but I’m sure he wanted them over, too. Seizures suck.  They really, really do.  So does waiting for Ronan to wake up after seizures.  Will he be refreshed?  Will another round begin?  Will he be scared like he was when the first ones started?  Immediately after these episodes, he finally gets a break to sleep off the intensity, but I am jarred and can only think of the worst ‘what if’ scenarios.  The only comfort I have ever felt in these terrifying situations is that Ronan has reached for me.  

While his vision is affected by these latest seizures, he still tries to find me.  Like that time in December, I thanked God that I happened to be home and only a few steps away from him when this all started on Friday morning.  That reach, that confused and scared stare, it was so heartbreaking to see.  Dear Lord, it was scary for me.  I can imagine it’s a thousand times scarier for my son. 

As Ronan slept it off, I got to work looking up seizures again.  It had been a while since I had to look those up.  Last year, we thought he might have been experiencing something else, so I put more effort into other topics.  Knowledge is power, though, so I got to work reading medical articles and watching medical videos about potential causes, treatment, and research.   

I didn’t have to wait too long for Ronan to feel better.  By noon, he bounced back to his happy, chill self.  I pray he always willbe able to do that.  

Cathy Jameson is a Contributing Editor for Age of Autism.  

###

Get to know The Real Anthony Fauci in this #1 best seller from Skyhorse Publishing.

Real Anthony Fauci: Bill Gates, Big Pharma, and the Global War on Democracy and Public Health

Anthony Fauci seems to have not considered that his unprecedented quarantine of the healthy would kill far more people than COVID, obliterate the global economy, plunge millions into poverty and bankruptcy, and grievously wound constitutional democracy globally.

By Cathy Jameson

I hadn’t expected to be at the pharmacy last week, but there was one minor complication after my shoulder surgery last Friday. I had an allergic reaction to something used during the procedure. The shoulder pain itself has been only at a very low 2 out of 10 on my worst day. Prior to getting it fixed, it had been at eleventy billion pretty much for the last 10 months. I’m incredibly grateful for relief, but I won’t get full relief until this allergic reaction subsides. That’s why I found myself at the pharmacy waiting for a topical steroid. It’s a compounding pharmacy, ready to serve all of their patients’ unique needs. 

Seeing that word compound reminded me of something my husband said earlier in the week.

We’d invited friends, who are like family, to celebrate Ronan’s little sister. She just graduated from high school and also had just celebrated a birthday. As exciting as those moments are, we had to put those family celebrations on hold. The kids understand and don’t usually mind the delayed celebrations, especially the ones where they get to invite everybody they know. We normally wouldn’t rent out our neighborhood pool for an after-hours party that would last well past when the sun goes down, but that’s exactly what I did on Tuesday. Izzy got to invite her closest friends, her grade school friends, her high school friends, and her teammates. She willingly and happily also left room on the guest list for the local families who’ve watched her grow up. These are salt of the earth people.  They are the hardest working, the incredibly positive, most devout friends and also some of the nicest people we know.  

A few were missing, but our hearts were full seeing everyone there. 

Once everybody had arrived, we turned down the music, we got the kids out of the pool, and we gathered everyone to sing happy birthday. Right before singing, much to the chagrin of Izzy, my husband gave a little speech. It wasn’t prepared, but it was perfect. He thanked everybody for joining us to celebrate our daughter and as he looked from person to person and added that these are the people he hopes always to stay connected to. 

“Should we ever have one, you’re the people we want to join us at a compound…”

As parents of a medically complex child with special needs, we have had to depend on people like those in attendance.  With things that pop up unexpectedly, these are the people I immediately reach out to.  They have brought my children to church when we couldn’t. These are the families who’ve offered to take my children to wherever they need to be. These are the families who pray for us when my own prayers are on a very stale and very tired repeat.

From the youngest in attendance to the oldest, these are our people.

After the compound comment, which got a few laughs but also some head nods, the music got cranking, the pizzas got eaten, and the kids splashed around until the lifeguards let us know our time was up. It was one of the greatest evenings we’ve had in a very long time. We’ll hope for more, especially now that the summer is in full swing and schedules are a lot more relaxed. I always look forward to seeing this group of kids.  I always cherish the time I get with these other moms, and I absolutely enjoy the back-and-forth banter from the dads when we get together.  I’ll look forward to the next meet up when yes, we will talk about that compound. 

One day, we may need one.

The world is seeming crazy right now, and some people out there in the world are acting more selfish than selfless. When things break, I need reassurance that someone can come andhelp.  When my kids get sick, when my husband travels, when I need a solidly, reliable person to help me get through moments I can’t handle on my own, I do have back up. Wouldn’t it be wonderful to have a place where we all can live and work and rely on each other? Do you have a plan like that with your closest friends? Do you have dreams of building a village? What’s your set up look like?  How are you accommodating your child with special needs? Got any blueprints you want to share?  If we are serious, we have an engineer, a nurse, some educators, 3 savvy businessmen, 2 pilots, a few mariners, several law enforcement folks, and a chicken lady ready to invite…  

Cathy Jameson is a Contributing Editor for Age of Autism. 

By Cathy Jameson

My husband, my Dad and my husband’s stepdad.  When I think of Father’s Day, these are the men who immediately come to my mind.  Always giving, they have been so supportive. Other close family members have been incredible to us as well, including the uncles. My kids know to reach out to them should their dad not be available. Thankfully, their dad is available even though his travel schedule takes him away periodically from our home.  

Because that travel schedule can be intense and unpredictable sometimes, there are other men folk who have been incredibly generous with their time. We haven’t had too many emergencies that we needed to call in those very close friends, but I cannot express how grateful I am for their and their family’s presence in our lives.  Just to have them on speed dial is comforting. 

Beyond the immediate family and that circle of friends, we also have spiritual support from others, to include our parish priests.One of the priests at our parish will ask me how Ronan is doing and is genuinely interested in listening to whatever is going on with my son. He’s been to the house a few times, for a meal, to bless the house, to celebrate a graduation. One night, one of my favorite nights, was when we played a few rounds of UNO. We Jamesons are cutthroat, competitive sort of people, so there was no holding back of the Draw Two cards, the Skips and the Draw Four cards. We laughed so hard at night, Father included.

On this Father’s Day, my husband is not going to get much of a break or get the day all to himself. He will do what he does best and that’s take care of me and the kids. I am resting, recovering, convalescing from a very recent shoulder surgery. I’ll be leaning greatly upon my husband and my kids, and later this week on those local friends who were aware of the surgery. Those very close friends had sent offers of dinners and to help take care of things that I certainly will not be able to for the time being. I’ve shared before, I really love being the helper, not to helpee.  

I promise not to overdo it and will lean on the strongest person I know. 

To my husband, to the Dads, the Papas, the Grandpas, the stepdads and the uncles, and to your closest friends who have stepped in and who love your child unconditionally, may they be blessed. May others see their good and strive to be like themalso. 

Cathy Jameson is a Contributing Editor for Age of Autism. 

https://www.youtube.com/watch?v=287ATMhVVO4

By Cathy Jameson

Last week was a roller coaster of a week.  Lots of good things happened, but a lot of other things were overwhelming, time consuming and also challenging.  I was feeling the weight of the world on my achy shoulder both at home and at work.  I can be myself at home anytime I want, including feeling completely overwhelmed. 

Other places, I remain professional.   

That had me taking necessary steps to push through some iffy moments.  Emotions certainly creep in when I’m out of the house, but I stay as focused as possible when I’m with other people, especially those with whom I work.  Behind closed doors, though?  Well, that’s another story. 

Emotions run high. 

Tears are shed. 

And words like defeated and frustrated are said. 

Not one to wallow for too long, I get through the defeat, the frustration, and dry the tears.  I pick up the pieces, and I face the challenge, whatever it may be.  Once I do that, I can focus on other projects.  I had two to work on for two families that I’d had to put aside.  Those were on my To-Do list for weeks, but other things kept popping up – things I absolutely could not put on hold. 

On Friday afternoon, I finally got to dedicate two hours to these two families.  These families were not taking their first steps to helping their children.  Those steps were taken several months ago and when they faced what many of us have had to face – reality that some “thing” was starting to hold their children back. 

I’m incredibly proud of these families for knowing that they made that call that got them those appointments that made them so nervous but got them those services that began their journey to early childhood intervention.  It was ‘total flashback’ for me hearing them share those first steps.  Some of what they’ve done mimics what I had to do for my son almost 20 years ago.  Some of it is still not easy, including handling the emotions that come with admitting an issue does exist.  With similar stories, I could step in and encourage their efforts.  I applauded them for listening to their instinct.  And I shared a promise to remain right there next to them when things get tough.  I spoke not just as an educator to these parents but as a fellow parent of a child with special needs.  I don’t always say that right away, but when the timing is right, I will tell a tearful mom and a worried dad that I know exactly what they are going through—because I, too, have walked a similar path. 

With summer days upon us, I gathered items late on Friday afternoon that will prayerfully help these young children.  In their individual care packages are activities that support literacy, manipulatives that promote number sense, sensory-friendly material, and games that encourage turn taking and fine-motor skill building.  The kids will think they are just playing with toys, but to mom and dad, these items represent hope. 

Hope that their child will retain what they’ve learned. 

Hope that their child will not slip through the cracks before returning to an educational setting. 

Hope that they can carry out goals their child’s teacher and team had.

I’m excited and also humbled to be the one who can step in and give ideas and provide care packages and share resources.  I do that so as to encourage a young family to be able to take the next step forward.  Even if it’s only a tiny step.  That’s all it takes to keep some hope alive. 

Cathy Jameson is a Contributing Editor for Age of Autism.

By Cathy Jameson

I dropped the ball.  I hate it when that happens.  After successfully helping one family, another was looking forward to my suggestions and assistance.  We’d set a date to meet, but I forgot.  When the day arrived, I had nothing but an apology to give them.

“I’m so sorry.  Life got busy…I’ll have time again next week.”  Life did get really busy, both at home and at my job.  Time is precious.  At certain points in life, time can feel like its slipping through your fingers.  It especially feels like that when your child is not hitting milestones as quickly as other children are.  I was disappointed in myself for not keeping better track of things.  The family who was expecting my input must’ve been disappointed as well. 

“I’ll call you.  I promise,” I said.

“That would be great,” the mom replied.

I had big plans to put some amazing resources together for her.  I’d already been in communication about some summer camps, ones that offer hands-on experiences for kids who are experiencing delays.  I’d sent links with other helpful information, which she and her husband appreciated.  When a family who is struggling reaches out, and who then listens to your advice, you want to continue to help them navigate the unknown.  I thankfully get another chance to do that.  Next week.  When life slows down quite a bit.  When I can dedicate two entire days to giving them hope.

Hope helps.

It helps people grow in faith, in trust, and in confidence.

Young parents need all three to get through some stages, including the ones their child is struggling through at the moment. 

Being an advocate for others has been a gift to me, and I promise not to mess things up again for this couple.  Thankfully, I get a second chance to help and to offer them some hope.  If that isn’t inspiring enough, in the process of this family reaching out, two more are waiting to talk to me as well.  Hope’s gotten me through tons of situations, and I’d like for these families to be able to walk the next part of their journeys with some hopeful direction, too.  As busy and tiring as the last two weeks have been, I’m really looking forward to next week.  That’s when I get to dedicate my energy some deserving children.   

https://www.youtube.com/watch?v=sa4eO-IcpqQ

Cathy Jameson is a Contributing Editor for Age of Autism.

In light of last week's legal case, we thought we'd share this book from Skyhorse Publishing. It's not an endorsement nor is it a a giddy cheer. It's just a book you might want to read.   In Get Trump: The Threat to Civil Liberties, Due Process, and Our Constitutional Rule of Law, Alan Dershowitz—#1 New York Times bestselling author and one of America’s most respected legal scholars—analyses the unremitting efforts by political opponents of Donald Trump to “get” him—to stop him from running in 2024—at any cost.
 
Alan Dershowitz has been called “one of the most prominent and consistent defenders of civil liberties in America” by Politico and “the nation’s most peripatetic civil liberties lawyer and one of its most distinguished defenders of individual rights” by Newsweek.
 
Get Trump makes clear that unconstitutional efforts to stop Trump from retaking the presidency challenge the very foundations of our liberty: due process, right to counsel, and free speech. Those who justify these dangerous departures from the rule of law argue that the threat posed by a second Trump presidency is “different” and “immediate,” while the departures from constitutional norms are longer term and more abstract.
 
Dershowitz explains that defenders of Trump’s constitutional rights—even those like him who oppose Trump politically—are sought to be silenced; their free speech rights attacked, their integrity questioned, and their careers threatened. Much of the media substitutes advocacy against Trump for objective reporting, while many in academia petition and propagandize against rights they previously valued—all in the interest of getting Trump.
 
The essence of justice is that it must be equally applicable to all, Dershowitz notes. No one is above the law but digging to find crimes in order to influence an election does not constitute the equal application of the law. In order to assure equal application in comparable situations, he proposes two criteria for indicting a likely candidate of the opposing party: the Richard Nixon standard and the Hillary Clinton standard—and most recently, the Joe Biden standard.
 
Get Trump warns that regardless of whether this anti-democratic effort to stop Trump from running succeeds or fails, it is likely to create dangerous precedents that will lie around like loaded weapons ready to be deployed against other controversial candidates, officials, or citizens about whom it can be argued that the danger they pose “is different.”
 

We ran this post post last year, when Cathy's daughter graduated from college. Each year, we celebrate the Spring/Summer milestones of graduations, First Communions, Proms, College acceptances, weddings - so many rites of passage. Some of us are..."left behind."  It's OK to feel sad and a sense of mourning and loss while others celebrate. You can be happy for every blessed event, and still acknowledge that pang of longing. XOX

By Cathy Jameson, May 2023

With all five kids home after my daughter’s college graduation, we enjoyed some extra family time.  Sitting in the living room together one evening, my youngest asked, “Mommy, when would Ronan be graduating college?”  I looked at her but didn’t answer right away.  Ronan’s not been in a classroom setting for quite some time now.  Even though she doesn’t remember some of the struggles Ronan faced while he was enrolled in school, she knows we took him out of the special education system for several reasons, to include seeing seizure activity increase. 

Every now and then I wonder if taking him out, and keeping him out, was the right decision.  I don’t dwell on that thought for too long because we provided many meaningful opportunities for him while he was out of the classroom.  But questions like the one Ronan’s youngest sister asked brought up things I’d long forgotten. 

Do I miss the IEP meetings?

Do I miss the worry I sometimes felt after dropping him off?

Do I miss the phone calls from the school nurse telling me of another seizure?

No.  I don’t miss any of that. 

I do miss some of the hope that some of Ronan’s teaching staff shared with us.  I do miss the thought of a someday graduation for him, even if it wasn’t going to be the same kind of diploma his siblings would receive.  But I don’t miss the stress that school was causing my son.  I didn’t need to share all of that or any of that in my reply to my daughter, so I focused simply on what she’d asked.  She just wanted a date, even if random, that Ronan would be graduating.

Today, Cathy shares a moment we will recognize. Maybe someone approached US when our kids were young? 

By Cathy Jameson

What do you do when you see a child and all the red flags are waving around them?  If it’s a stranger’s child, do you start a conversation?  If you know the person, do you take them aside and say, “Hey, I need to talk to you.  I don’t know if you are aware, but some of the things your child does isn’t… typical.  I can share more if you’d like.”  

Do you take on that role, or do you hope that mom or dad know and have already set up an appointment with their provider? 

I’ve run into that situation several times over the years.  Depending on where I am, or who I’m with, I will say something. I don’t say anything rude but will weave some of our experience into our conversations.  “Yeah, we had no idea what caused my son to begin having delays.  He was typical until he wasn’t.  But then, I started to really look at things…what we were eating, drinking…what was in our older house that we’d started to renovate… and even what medicines we were giving him.”  

I don’t blurt out “Hey, it was the vaccines!”  

But I do my best to create a natural conversation with back-and-forth sharing.  If it’s the right time to share information, I drop hints, I mention names, I plant a seed.  Most of the time I walk away from the conversation from a young mom or dad thanking me for sharing what I know.  

They all have a similar response, “Wow, and thanks.”  

Every now and then, what I share makes no impact.  It’s not an off-the-cuff response I get after being completely honest about my child’s health timeline with that stoic person.  But it sometimes feels like a “sucks to be you” kind of response, and they go on their merry way.  It’s happened only once or twice that I get a completely different response from a young parent – none at all.  The sad part is that their child truly is displaying tell-tale signs of a delay.  It’s never my place to diagnose, and I can’t say that it is an autism specific-delay I’m witnessing.  

But something appears off.  

By Cathy Jameson

“It is more blessed to give than to receive.”

This weekend, that saying will be true for lots of people. Across the US, scores of children will be blessing their moms the cutest hand-made crafts.  (Kim's daughter Gianna  made the fridge art you see.) Father’s will give fresh flowers to the mother of their children.  Grandmother’s will be given the gift of time with family either via a phone call or a visit from their precious grandchildren.  This weekend, I, too, will be blessed to be givengifts from my family.  I don’t need anything fancy or expensive, and the kids know that.  They’re givers, though.  

I’m finding that as I age, I need less stuff.  Not that the kids’ gifts are stuff.  The older they get, the more thoughtful their gifts have become. I’ve gotten records of my favorite 80s bands. I was given a beautiful bowl from my favorite New England town.  I am given time to step away from my responsibilities when they offer to watch their brother.  I try not to make a big fuss about the national holidays, like Mother’s Day, but I’ll never turn away their thoughtful gestures on those days. They’ve given more than other kids may have had to. 

We had a long week last week with lots of changes.  Ronan’s brother came back from college as my husband geared up for a lengthy trip.  In the midst of that, our schedules have turned upside down with end-of-the school year events, to include preparing for an upcoming graduation. Ronan’s gotten caught up in the middle of the hustle and bustle and is resisting some of his typical routines.  Where he’s usually the kid that’s happily settled in the living room or in the den most of the day, he’s now retreating to his room or is looking for a quiet corner to listen to his music.  It hasn’t been the easiest week for any of us, despite knowing that this particular week and this entire month wasgoing to be jam packed.  By Friday, we all needed a little bit of a break – from the busy and from some increased stress.  That’s not a bad thing, especially because we recognized the stress.  We knew one way to handle it was to take a break, which is what the kids did on Friday night.  

After taking on the responsibility of watching their brother for much of my workweek, they all ended up out of the house for part of Friday night.  I offered to buy take out.  They offered to pick it up.  While they were out, I cleaned up the house.  While I cleaned up, they got to hang out with some friends before dinner was ready.  Sending me texts and photos of the shenanigans made me smile.  Be kids!  Be silly!  Have fun!  Take your time!  I wanted them to enjoy the few minutes away because next week, they’ll be ‘on the clock’ with their brother again.  

They give.  They give so much to Ronan, to me, and to my husband.  But I want them to also be good to themselves, to enjoy their teenage years, and to make some good memories together.  To do what we’ve asked, and for them to continue to offer to help their brother, isn’t easy.  I don’t ask for anything in return, just that they remember to pace themselves.  If it gets too much to keep an eagle eye on Ronan, give that job back to me.  If it’s too hard to still be taking him to the bathroom, give that responsibility back to me.  If the stress of doing everything for him that he cannot do for himself, take a break, and give that to me.  I remind them frequently that they are appreciated, they are incredible, and that they are doing more than we ever expected them to do.  

What a blessing to see my children be so brave, so kind, and so protective of their brother with special needs.  I don’t need flowers or chocolates or a special dinner from my children today.  I’ll never ask them to do anything more for me on Mother’s Day because every day that they help me help Ronan is a gift.  

Cathy Jameson is a Contributing Editor for Age of Autism. 

By Cathy Jameson

God moments.  Those happen quite a lot for me/to me.  Those are moments when I was supposed to be somewhere else but find myself with people I didn’t expect to run into.  I find myself in places I hadn’t planned to be, like when I wasn’t supposed to turn right but did.  Like when I wasn’t supposed to be at that store at that time, and I was. 

Friday, I wasn’t supposed to be home, but our caregiver was unavailable to help watch Ronan. 

So, I worked from home that morning. 

Had I been at work like I was scheduled to be, I would not have been able to quickly attend to the very big problem we were facing….

My phone was sent to silent and sitting on the table during a meeting with my boss last Wednesday.  When a call came through, I could see a phone number of the caller flash across the screen.  I recognized the area code – it’s where my son’s specialists are.  Ronan has a pretty big appointment next month.  They’re probably starting the pre-op paperwork, I thought to myself.  I’ll make sure to call them back when I won’t be interrupted.  As quickly as the phone number was on the screen, it disappeared, and I returned my focus to the meeting.

When my phone lit up two seconds later, I realized that that phone number wasn’t one of the clinic lines.  It was the specialty pharmacy that supplies the name brand seizure medications Ronan takes.  My boss saw my facial expression.  She didn’t know who it was but could tell it was important.  “Take the call,” she said. “We can wait.  Family comes first.”

I ran out of her office and found a quiet place to take the call.  “Hi, hello, hello?”  It’s hard to not sound panicky when you’re quickly feeling very panicky. 

“I’m calling about Ronan’s order.  Can you verify his birthday?  We discovered a problem and want to get it taken care of…the medication is out of stock.  We have a few options, but…”

“What?!” I immediately had a flashback, a terrible one, of a similar medication situation in December 2022.

I had just called the pharmacy the day before to ask them to refill the prescription.  Yes, we have the med in stock.  It’ll be ready tomorrow, I’m sure they told me.  “What happened between yesterday and today?” I asked.

“That was the other medication, and that order is ready,” the pharmacist replied.  Fumbling for words, I blurted, “What can I do?  Who do you need me to call?”

By Cathy Jameson

Years ago, I would share a really awesome April Action Playlist.  This year, like last year, I picked just one song.  It isn’t a favorite, it’s part of an on-going theme, which this year has been shouldering the pain…

I’ve had an issue with my shoulder since last year.  First, I babied it, then I ignored it, then I babied it some more.  That’s not the best way to take care of chronic pain, but it’s what I did until the pain became unbearable. At that point, I knew I needed to take myself to the doctor because the day that it hurt the most made me cry.  I’d only walked to my mailbox at the end of my driveway.  Walking and getting the mail hurt.  The day before, I had gone for a walk down the street to get some fresh air and to do some exercise.  It was no more than a mile – my legs were fine, the rest of me was fine, so why did my shoulder hurt so dang much from walking?  It was the natural swinging of my arm that became excruciating.  I need my arm!  

But I was now dealing with not just the chronic pain I ignored; I also had a frozen shoulder. 

The weekend that the pain stopped me in my tracks, my children picked up – literally, everything for me.  They made my meals, they did the laundry, they surrounded Ronan with love and attention so I could sit quietly away from everyone and everything and do absolutely nothing.  I really did nothing that weekend, too.  I sat in my favorite chair in my favorite comfy pants with my favorite blanket and watched documentaries. I ate meals I didn’t have to make, I watched shows that had no relevance in my life, and I rested.  

I knew I could only do that for only so long, so I reveled in the extra care and attention I received. 

When Monday morning arrived, and when my husband and kids were back at work and school, I needed to rally and get through the pain.  It was hard, and with some assistance from some PT exercises that actually worked, I managed.  But the pain would linger every few days, and still does all these months later.  The doctor had asked me if I had ever damaged my shoulder before.  Nope.  Never.  Not recently at least.  Wait.  I’ve not had the best exercise program but wanted to get back into working out last summer.  I did try to do some planks last year, I told him.  I tried doing some pushups, too, but those were so hard.  Not because I’m getting older, but because I just couldn’t manage to carry through the motion needed to push myself up off the floor.  It really hurt.  

Was trying to get healthy actually hurting me?  

Ha!  

What an awful thought.  

The doctor said maybe, but he asked again if I had any other older injuries.  Yeah, actually, there was that one time I got hit by a car while riding my bike when I was in my mid20s.  I fell off the bike and landed hard on my right hand and jarred my shoulder.  I didn’t need surgery, but I wore a sling for weeks.  Could that old injury be causing the new pain my older body is dealing with now?

Note: You must share this poignant slice of all of our lives with others. That's your homework today. And grab a tissue. You'll need it. XOX

By Cathy Jameson

We had a busy weekend last weekend with the kids in different directions.  We couldn’t all be at a friend’s celebration on Saturday afternoon but would finally meet up later around dinner time.  Having spent most of the day out of the house, I was tired and didn’t want to go home and make dinner.  I had Ronan with me, and he didn’t want to go home yet either.  He knew we’d be driving by one of his favorite restaurants, so I called my husband and asked if he and the girls could meet us. They could. 

We had to wait about 20 minutes to be seated, so we spent that time browsing in the restaurant’s store.  Always a treat to see the ‘old timey’ games and candies, Ronan was so patient as we reminisced.  I was getting hungrier by the minute, and I imagined he was also.  Just as I thought I might need to grab a snack from his bag, the host called us to a table.  We are usually seated by one of the large windows toward the middle of the restaurant when we eat there.  This time the place was busy and got seated at the very first table customers have to walk by as they enter the dining room.  It wouldn’t bother any of us because we were so hungry and would not care that we were next to a busy area. 

I was glad we got the table when we did.  While the kids started to look at the menu, I noticed that other parties were soon standing at the host’s station asking how long it would be to get seated.  

Our server was quick to help and clued in that Ronan was not going to order for himself.  She watched us sign to him and watched him respond with signs back to us.  Ready to help, she got his drink order right away.  While we waited some more, because the restaurant was still very busy, we chatted, we looked at pictures, and we made sure Ronan was happy.  He was.  I gave my attention back to the girls, but out of the corner of my eye, I saw that someone else was watching them, too. 

The few minutes before, my daughters were taking pictures of Ronan and posting them in our family chat.  Laughing at the edits they made and carrying on like the best of friends, we were getting a little silly in our little corner.  Maybe that’s what caught this older fellow’s attention.  I glanced toward his general direction, not staring directly at him yet.  Ready to pounce, if needed, I slowly turned and faced him. The girls with their backs turned, were oblivious.  My husband, though, who was seated next to me at our round table also realized that we had an audience.  Then we noticed that this guy was not alone.  

Another man was with him. 

I wasn’t nervous.  Other places in that area would’ve had me scoop up my kids and run.  But we were in a safe place with tons of people, mostly families, enjoying an evening out.  The older man didn’t look out of place.  Neither did the younger man behind him.  Looking past the older man at the younger man now, I saw something familiar.  His stance, his low tone, his expression…

It all looked a little like Ronan.  

Trying to not make it obvious, my gaze immediately moved back to the older man.  He was much older, more like a grandfather.  He was tall but his back was hunched, almost like he was carrying a large weight.  The young man, who had telltale signs of developmental delays the more I observed him,was thin and much, much younger.  If I had to guess, I would’ve said he was in his teens.  

He was actually in his late 20s.

I know that because the older fellow approached us.  I could tell that he wanted to say something almost as soon as I saw him staring at us.  It was a few long minutes of silent watching, and never a creepy kind of watching.  He looked at Ronan, I mean really looked at him.  Then he looked at Ronan’s sisters.  He turned his head and looked at both me and my husband, then back to Ronan.  

During that, the girls were engaging in their own conversation for the most part, but they would try to get Ronan to respond.  It’s typical behavior that they always do, but I think it took the man by surprise. It took him by surprise, but it also made him smile.  That’s when he came over to our table.  

Hunched over, with arthritic fingers, and a slow gait, it was just a few steps he had to take, but it made a huge impact.  

He thanked us, and he encouraged us to please continue to treat Ronan like we had been doing.  Walking to Ronan, he put his hand on his shoulder, patted it gently and with so much compassion.  “He’s 27,” the fellow said as he pointed to the young man behind him.  “He’s 27…his name is Max*, he’s non-verbal, but he’s more like a 7-year-old.”  *name changed

I choked up.  Ronan’s sister, Izzy choked up, too.  Wiping tears from our eyes, we were filled with emotions we didn’t expect. He and my husband spoke for a minute, but I remained speechless. I thought we were going to get breakfast for dinner and then scurry home.  

We got so much more than that.  

As the older man had started to stare at my family, I had begun to stare at the young man.  Assuming it was a grandson, I thought how amazing that he took him out to eat.  Going out takes a lot of work.  It takes guts, too, for some people.  Sometimes it’s easier to just stay home. But for us, we always want to try to do things together as a family.  Even though this was one of Ronan’s favorite places, anything could set him off.  Thankfully, nothing did.  If anything, this night out set something else in motion.  

We were seen and made an immediate connection.  Very quickly, Ronan’s little sister wanted to do something about it.  The older man motioned for the younger to follow him as their table was called. As they walked away, Izzy wiped her eyes and asked, “Can we pay for their meal?” Trying really hard now not to burst into tears as I answered her, I said, “Oh, honey. That’s exactly what I was thinking we should do!”

So, we did.  

Izzy excused herself from our table, scooted back to the store and purchased a gift card.  Once we were finished eating, she took the gift card and walked over to the men who befriended us.  “I know how hard it is to take of someone like Max, so we wanted to show our kindness and give you one less thing to worry about.  It’s not much, but we wanted to give you this for your dinner.”  

The older fellow balked, “It was nothing, no, no, you don’t need to…”

But Izzy insisted.  

Normally I would never let my teenage daughter cut off an adult, but this time, she managed to do that while being incredibly respectful, compassionate, and kind. Trying not to tear up again, she said, “We know you can pay for it, but please, we really appreciate you.  We want you two to enjoy your dinner here like we got to.” She gave him the gift card and caught up with us as we were heading to the door.  

“I’m really proud of you.  I’m glad you got to represent us in that moment, too,” I said to her.  We hugged, and then like usual, we split up and went in different directions—the girls off to see friends and the rest of us back to the house.  

Heading home, I was thankful for how well Ronan did.  It was a really long day for him, and he handled all of it very well. I was also thankful for a good dinner out with my silly family. I was thankful for connections we made and for compassion shared.  Special needs families aren’t always treated with respect.  Tonight, we were, and my children quickly offered that to another family.  I know they’ll be stronger because of all they witnessed that night. 

Cathy Jameson is a Contributing Editor for Age of Autism. 

https://www.youtube.com/watch?v=WFY2Hdh7cvA

Rest in peace, Mandisa.  May your music continue to inspire those who, every now and then, feel down and out. 

By Cathy Jameson

A few times during the day I forget about all the special needs stuff that has filled much of my life these last two decades.  That happens when I’m busy at work, or when I’m concentrating on other real-life things at home, like bills.  During those moments when I have to concentrate on other things, someone else is with Ronan.  I get the chance to physically attend to whatever is right in front of me and mentally ‘walk away’ from some of my thoughts when he’s with someone else.  I got to do that last week when I jetted away to the west coast for a few days to visit family.

I didn’t worry at all about Ronan while I was gone. 

I didn’t stress about what he was doing or what he wasn’t doing.

I didn’t overthink decisions that I usually have to make for him.

Knowing he was happy back home, I didn’t let other thoughts, like diapering and GI distress, interrupt what I was doing like what tends to happen when I’m back home.  Back home, Ronan was safe.  He was in good hands.  Because of that, I relaxed.  That meant sleeping in late, eating a full meal in one sitting, talking til wee hours of the morning, and going out whenever I wanted.  It was a luxury, and I am grateful for every minute Ronan was cared for so that I could walk away.

I’ve been able to take little vacations before, but scheduling those can be a nightmare.  The stress of that will sometimes have me second guessing a trip.  But, with careful thought, because it really does take some serious and careful planning, most of those trips have been successful.  I may come back exhausted, but it’s been worth the refreshing few days away.

Note:  After you read Cathy's post, we're sharing two "must have" books from Skyhorse and the Children's Health Defense imprint about special education and a book coming out in August that breaks down the IEP process from Connecticut-based advocate Julie Swanson and special education lawyer Jennifer Laviano.  

By Cathy Jameson

I’ve had the opportunity to be on the other side of the table observing the IEP process.  It’s no easier than being on the side I’ve always been on – on the side with my son.  The prep work, the research, the necessary documentation, it all takes hours.  It also takes courage.

When Ronan was in school, we had all manner of IEP experiences.  From the most incredible meetings to the extremely tiring ones that dragged on for hours, I am glad that those are behind us.  During that time, I learned not just about special education but how to truly advocate.  Some of my son’s teams advocated with me, and I’m very grateful for that Dream Team.  But others, well, I can’t talk about them without getting a little upset. 

Knowing that a family fresh in the IEP world needs great support, I thought back to those tough days.  Would I want them to experience the very worst that special education has to offer?  No way.  I want them to know everything they could ask for.  So, I worked hard to be the advocate I wished that I had when it was just me against Ronan’s team. 

That sounds terrible – me against them. 

But that happened, and I know it still happens to some families.

Not on my watch.

So, I researched for a child who isn’t mine.  I advocated for parents who have barely put their feet on the IEP path.  I documented the pros, the cons, the ‘what ifs’, and the ‘what can be’ with them and for them.  I shared everything I could and then followed up so they wouldn’t feel alone.  That part was always hard, the hours and days after a meeting.  Even after a good meeting, I’d feel so overwhelmed.  There was always more to do!  So, I made sure to follow up, to be available, to say…Hey mama, I’m here, we’re here, and we truly want to help…

I didn’t cry when the young mom did as the meeting wrapped up, but my heart ached for her during the meeting and long after it.  How I ached to see that mom cry.  I could see myself in her - young, hopeful, and wanting.  She wants so much for her child to be able to stay in general education without supports.  Right now, though, that is out of reach.

Right now, the parents are rethinking things.  Next school year will look different for them.  The following year likely will, too.  Could their child be in gen ed without supports?  I can’t say, and I won’t say.  It’s not my place.  My place right now is across the table from them with other educators and advocates.  I never thought I’d find myself there.  Now that I am, I want to be everything my son’s worst teams weren’t for him.  I want to be part of that old Dream Team we had once – they were helpful, truthful, kind, and compassionate.  If I can give back what others failed to give me, it will be worth every emotion that comes with advocating for a stranger’s child with special needs.

Cathy Jameson is a Contributing Editor for Age of Autism.

IEP Guide for All: What Parents and Teachers Need to Know About Individualized Education
Programs

By Julie Swanson and Jennifer Laviano
Children's Health Defense Imprint

A Comprehensive and Accessible Guide to the IEP Process The IEP process can be confusing, frustrating, and time-consuming. Understanding what your child or student needs is one thing, but getting them help and resources can be another thing altogether. Drawing on decades of experience, Jennifer Laviano and Julie Swanson are uniquely positioned to guide both parents and teachers through the IEP process. The IEP Guide for All breaks down the legal and standardized language and will leave parents feeling confident while navigating the IEP process. Whether you're a parent, a first-time educator, or an experienced educator, this guide will help get students the resources they need and highlight what everyone needs to know about the IEP process.

Your Special Education Rights
By Julie Swanson and Jennifer Laviano
Skyhorse Publishing

 The definitive guide for parents of children with disabilities is out. This book is authored by two special education experts and draws on decades of experience from the front lines of special education advocacy. The authors, Jennifer Laviano and Julie Swanson, detail a strong, practical, and results oriented perspective that helps parents cut through the fog of special education to get the services their children deserve. "Our bottom line is parents are often ineffective at advocating for their child because they don't know their rights," said Jennifer Laviano, co-author and special education attorney. "We see it time and again: The child doesn't get what he or she needs because the parents don't know what they don't know. This book looks to change that," Laviano added.Your Special Education Rights demystifies the federal laws related to public school children with disabilities and explains how school districts often ignore or circumvent the law.

"I'll be nom nomming you...." This crunchy post brought to you by Cathy!

By Cathy Jameson

I laughed out loud after reading a memory on Facebook one morning. “…watching Jamie Oliver’s show on ABC about a food revolution while shoving my face with chips, salsa, and some tortillas since the chip bag was almost empty and then washing it all down with wine…mwuhahahahahaha!”

I don’t remember doing that. I do love me some chips and salsa, though, so I’m pretty sure that did happen.  Just the other day when I didn’t want to make dinner (for the 8,668^th night in a row), I sat down with a bowl of chips and salsa.  This time, I added sour cream, some cheddar cheese, smashed everything up together and ate it like it was a bowl of ice cream – happily with one spoonful at a time.

Another memory also had me laughing out loud. “…is it wrong that I am eating chips and salsa and drinking wine while watching my husband workout to the P90X?”  I guess it was, because the next update I shared was, “I’m not going to eat chips and salsa but instead do the P90X workout with the hubby.”

For those who don’t know me personally, I really like chips and salsa.

But back to that first memory about the food revolution, which was from 2010… 

We’d already revamped the kids’ diet a great deal at that point.  Ronan had been casein-free and gluten-free since 2005.  That happened after I’d read about elimination diets and was eager to see if it could help.  I was overwhelmed thinking about how to remove gluten products, so we started with casein ones first.  Within days, like 2 days, we saw improvements!  I didn’t need much encouragement to remove the gluten, so we did that, too.  While not a quick ‘wow’ factor like when we removed casein, there were small and steady gains over time.  They were helpful for him so we began to change his siblings’ diets and later, ours as well.  

Today, Cathy invites you to share an idea that worked for your loved one with autism.

By Cathy Jameson

While home one morning last week, I texted a co-worker back.  She’d just shared something that was interesting and would be useful for me.  I could’ve replied with a long response about how helpful the info was, but I kept it simple.  “Good to know!” I typed.  It was really helpful information, and even though no one was listening, I said it out loud right after I sent the text.  

Good to know!

I remembered that response later that afternoon when I saw a text reminder.  It was for two appointments we had scheduled for Ronan at the end of the week.  One appointment would be with a new provider, someone on our GI team recommended we see.  I could only hope that what we would learn from her would be good to know.  Thankfully it was, and we now have a few more tips that should give Ronan some relief.

For years here and on other platforms, I’ve learned things from parents and providers that have been good to know.  Those have been things about child development, about navigating the health care system, about which doctors to trust and about which questions to ask.  I wouldn’t be the mother I am today without the knowledge I’ve learned from others.  

Early on, I learned that it wasn’t just the best that I wanted for my son when it came to his education; I would want what was appropriate.  I learned that I didn’t need a pediatrician, many of whom push vaccines; I could get care from a family practice, where vaccine choice is better respected.  I didn’t find out everything all at once, but over time, I learned how to speak up and when to speak up. 

Today, I’d love to find out your best advice that you found good to know.  How quickly did it help, and who shared that info with you?  Did other friends take the advice and have positive results?  It can be very frustrating when what will work for one doesn’t work for another.  But if there’s something I’ve learned in all the years I’ve been advocating for Ronan it’s that we never give up.  It’s just not an option.

As we tiptoe into April, give us what you’ve got.  Tips, suggestions, books, websites – unload your very best advice.  Let’s keep our stories going.  Let’s keep the good advice accessible, and let’s continue to be a beacon of light to those who need it the most. 

Cathy Jameson is a Contributing Editor for Age of Autism.

To those whose shoes are also so worn thin because of how long the journey has been, this one if for you…xo, Cat

https://www.youtube.com/watch?v=GrC_yuzO-Ss

By Cathy Jameson

I ordered pizza on Friday evening.  Then I sat back and listened.  Ronan’s younger brother is home from college for a few days.  The house comes alive again when the siblings are together.  We don’t have everyone home, but when at least 3 of typical sibs are together, the activity level in the house – and the volume – increases quite a bit.

Right now, two are strumming on their guitars. 

Another is joining in singing the lyrics. 

They’re enjoying favorite songs from their childhood.

My heart is so happy!

Where’s Ronan in all of this?  He’s in his room.  He was happy earlier when he had a few quiet minutes with his favorite brother before the girls came home from an outing.  After his dinner, Ronan returned to his music in a quieter corner of the house.  We may end up hearing him raise the volume of his favorite song tonight, something that makes me laugh. 

He and I have competed to hear our songs before.  My favorite is when he plays one that he’s heard us play – like this one from Muse.  Our new caregiver shared that Ronan likes her Christian music, too.  As soon as one of her go-to songs ends, he signs for her to play it again.  She’s happy to oblige.  I can’t tell you how comforting it is to have someone step into our home and keep Ronan feeling settled while the rest of us are out doing our own things.  I’ve worried before about other people who’ve promised to keep Ronan safe and haven’t.  The kids have their obligations and can’t be home to help, which has me seeking help elsewhere.  Lately, we’ve been blessed with attentive helpers who are in tune with Ronan’s needs. 

If anyone is in tune with Ronan, it’s his typical little brother.  It doesn’t matter how much time has lapsed since they were together last.  The sibling shenanigans will surely be in full swing soon.  In between, we’ll witness some incredible moments of brotherly love.  Days before Willem was due home, he said he’d help watch Ronan so I could get some stuff done.  Like his sisters do, he jumps right in ready to offer a hand, even before I think to ask. 

When the kids come home, I’m very mindful that they’re here on a break.  They’re here to rest, to relax, and to catch up not just with us but with friends as well.  So, before I ask them to assist with their brother, I see if they’ve already made plans for the time that they’re here.  It hasn’t happened, but I never want them to resent having to take care of their brother.  So, I stay mindful, respectful, and always hopeful that they will remain willing to stay home when I have to jet out.

As Friday night wound down, Ronan got quieter.  He was ready for bed long before any of the rest of us were.  After getting him tucked into bed, the kids stayed up about an hour later, catching up on the last few weeks since they were altogether.  They shared photos, videos, stories and also made plans for the week ahead – it was a very happy homecoming.

Someday they’ll go off in different directions, but for now, I love that they happily find themselves here with us. 

When we are together, we are home. 

Home. 

It’s my favorite place to be.

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

Cathy Jameson is a Contributing Editor for Age of Autism.

A paper crane, made for me by my daughter on the day of Dan’s memorial service.

By Cathy Jameson

I headed into the D.C. area last week for a meeting.  As I crept closer toward my destination, I saw a sign for Falls Church.  I’d always imagined it to be an idyllic place.  I’m sure at one point it was, but now it looks like every other busy city streetscape in Northern Virginia.  The first time I’d heard of the place was from Dan Olmsted.  I found it a treat to be able to meet up with him whenever I was near Falls Church.  It wouldn’t be too many times, but each time was cherished.

We are heartbroken to announce… 

I miss his voice.  I miss his wisdom.  I especially miss his encouraging private comments to me and my husband when I became more public with my son’s issues.  To have Dan Olmsted in my corner, well, it meant the world to all of us Jamesons.  

…a celebration of life…

We’re creeping up on the date of his memorial service.  That’s a day I’ll never forget.  To see his closest friends and family gather to honor him, it’ll be a forever memory.  There were tears.  There was laughter.  Many heartfelt memories were shared.  My favorite personal memories of Dan are of when he got to meet up with me and my kids.  I'd find a diner for us to meet that wasn’t too fancy of a restaurant in case my kids were too loud.  Oftentimes, they were!  He didn't mind how silly and loud they were though.  He didn't mind how distracted and needy they'd get during the meal either.  He was patient, kind, attentive, and happy.  Dan smiled at their silliness and showed them only love.  The kids smiled at Dan and loved him right back. 

I was not privy to Dan’s personal life nor to events that led up to his death, and part of me doesn’t want to ever know them.  What I do know is that Dan was always a light.  He was a voice for the voiceless.  He was upbeat without ever being over-the-top.  I knew that he could be a busy man, but for me, he was always an email away.  Responding quickly and concisely, I loved that he led off the AofA weekend with his Saturday’s Weekly Wrap column. To follow him on Sundays with my posts?  It was humbling. 

When my meeting ended last week, I knew I’d pass those signs I saw as I headed into the District.  I slowed down just a bit.  I remembered everything all over again.  Falls Church.  It’s where my friend and mentor lived.  I pray that those he loved are doing okay.  I pray that Dan’s work is never forgotten.  I know it won’t be forgotten here.  I just wish he had more time to share all that he knew, all that he learned, and all that he wanted the rest of the world to know.

…a compelling symbol for hope, love, honor, and peace.

Dan Olmsted.  He was a journalist like no other.  May his memory be eternal. 

Cathy Jameson is a Contributing Editor for Age of Autism.

###

You can buy Vax-Unvax Let the Science Speak By Robert F. Kennedy, Jr. and Brian Hooker, PhD for just $1.99 Kindle edition. The Kindle app works on your tablet or smart phone and is free!  Hardcover also available and can never be deleted.  NEW YORK TIMES BESTSELLER!

The Studies the CDC Refuses to Do

This book is based on over one hundred studies in the peer-reviewed literature that consider vaccinated versus unvaccinated populations. Each study is analyzed, and health differences among infants, children, and adults who have been vaccinated and those who have not are presented and put in context.

Given the massive push to vaccinate the entire global population, this book is timely and necessary for individuals to make informed choices for themselves and their families.

The Wuhan Cover-Up: And the Terrifying Bioweapons Arms Race (Children’s Health Defense)
By Robert F. Kennedy, Jr.

“Whenever I read, listen to, or debate Bobby, I learn something new and change my mind on at least one or two issues, while vehemently disagreeing with many others. Both the agreements and disagreements stimulate my thinking and emotions, even when they make me angry or concerned. Read him and make up your own minds." —Alan Dershowitz

“The Wuhan Cover-Up will blow out of the water the international disinformation campaign by US and Chinese government officials and their bribed scientists that COVID-19 somehow magically jumped out of the Wuhan wet market. Kennedy’s book will provide the ammunition needed for us lawyers to hold them all legally accountable for this Nuremberg Crime against Humanity.” —Professor Francis A. Boyle, author of the Biological Weapons Anti-Terrorism Act of 1989

Note: Cathy brings a dose of high hopes today. I'm a big Frank Sinatra fan, and High Hopes was a classic he sang with a group of children. It's a song about NEVER GIVING UP. I added a YouTube clip at the end of Cathy's post.  The art above is a print you can purchase with the lyrics - not related to AofA in any way, but I wanted to give them a plug since we used the wonderful art.  https://songlyricdesigns.com/frank-sinatra-high-hopes-watercolour-rainbow-clouds-decorative-gift-song-lyric-print/https://songlyricdesigns.com/frank-sinatra-high-hopes-watercolour-rainbow-clouds-decorative-gift-song-lyric-print/


By Cathy Jameson

Ronan had a follow up appointment last week to see his neurologist.  But when I got the notification that his appointment was coming up, I noticed that he would be seeing a different provider.  Did they switch us out of pediatrics to an adult doctor?  I wondered.  No, but that did come up during the appointment. 

Ronan has one more visit with his regular pediatric neurologist, who is still on staff.  After that next visit, he’ll begin seeing doctors who work with adult patients.  I’m not so much dreading that idea because of not trusting those doctors.  I’m dreading leaving the pediatric team because we’ve received such great care from every single person on that team. 

From the dentist to the gastroenterologist to the physical medicine doctors, many have guided us through several changes over the last few years.  They’ve been a lifeline for us during some dark moments.  We had no idea who these providers were when we first met each of them.  Over time, we grew to know them as they grew to know us.  We didn’t just get to work with them one-on-one.  With how complicated some medical conditions have been, we’ve all had to work together.  The GI doc consults with the neuro doc.  The dentist has been known to review the medications prescribed knowing they can affect dental health. Ronan’s specialty pharmacist chimes in, too!  I’ve shared before that I like the drive to this facility for one thing because it’s a pretty drive.  But also, I like it because we have a great team of helpers greeting us.

To have to start from scratch with a new team of specialists feels daunting.  

Once we leave the pediatric neurologist to a general neurologist, I’m sure other general docs will soon pick up Ronan’s care.  I knew that day would come, but I didn’t expect it to be right now. 

I should know that expectations change; it’s been a way of life for a long time.  My early expectations of my son’s development changed.  My early expectations of how I would mother him changed, too.  Since he got sick, every early expectation I have had has changed. 

I still remain hopeful.  Not to a fault but because that has always been my nature – to be hopeful.

By Cathy Jameson

A nurse from the one of the agencies that provides services for my son calls every 3 months. “Hi, Mrs. Jameson.  How is Ronan?  Does he need anything?  Do you need anything?”  Those calls are quick because Ronan’s been doing fine, he doesn’t need anything, and I don’t need anything either. 

Every six months, the nurse calls with scripted questions that keep us in the system and qualified for continued care.  Once a year, she visits us.  I’m always prepared for those visits and have appreciated the extra medical resources her agency can offer.  Besides resources, they can also offer medical supplies.  Ronan’s benefitted from having those items, for which I’m grateful.  Before the last home visit, I thought about what new items he might need but couldn’t think of any.  I also looked back at my notes from previous visits and jotted a few things I wanted to ask about.  For the next visit, the nurse who had met with us for years wouldn’t be joining us.  It would be a new person joining Team Ronan.  

I’m happy that the nurse who’d seen us through a few issues was moving on to something else.  But getting new people on board after all the things we’ve had to manage, and have successfully avoided, didn’t feel comfortable.  It felt like work.  Keeping my child safe and healthy is my job, so I got to work doing a little bit more prep work for the in-home visit. 

The day the new nurse came was less stressful than I thought it would be.  She was kind, lovely, and had years’ worth of really good notes from the nurse we’d know for years.  She even knew that flu shots are something we don’t care for.  That topic would be the tell-tale sign – if she hassled me, I knew to do more listening than talking.  If she didn’t, I’d still do more listening than talking, but I’d be open to hearing what she had to say.  With Ronan no longer under 18, the questions on his forms changed, including social/emotional needs.  No longer were they about which toys and activities he liked to do.  They were questions you’d hear an adult being asked.  

I have a good poker face, so didn’t let her know the first question shocked me:  

Does Ronan feel safe at home?

Yes. 

[Geez, lady. What a question!  He loves being home. LOVES it.]

With his special needs, I’m going to say he’s not out partying.

Right. 

[WHAT?!]

He’s not smoking?

Nope. 

[Good grief.]

Or drinking? 

No.

[Except this one time…]

The more questions she asked, the more one-syllable responses I gave.  It satisfied her checkboxes, and it secured care for my son for another year.  With that done, I thanked the new nurse for her time and filed the paperwork. On her way out, she could see that Ronan was happy, healthy, and safe with us at home.  

Last Friday, we took Ronan out for dinner just because.  Well, mostly because it had been an incredibly busy week for me, and I didn’t want to make dinner.  We went to our usual place, but forgetting it was Friday night, the place was packed.  We went to another restaurant that we know Ronan enjoys.  Again, we saw a line out the door of patrons waiting for a table.  We drove farther into town, but four times that evening, we left because the wait was so long.  The fifth place, another go-to local eatery was open, empty, and perfect!  Ronan loves it there, and we loved seeing him so happy.  

Once dinner was over, we headed home.  We didn’t have the energy to do anything else.  And Ronan didn’t seem to mind going straight back.  Walking into the house with his little sister, he smiled.  He was home.  And he was incredibly happy to be there.  

Keeping him happy, healthy, and safe.  It’s my job, and I’m very happy to keep doing it.  

Cathy Jameson is a Contributing Editor for Age of Autism. 

By Cathy Jameson

One of Ronan’s sisters and I headed toward the mountains last weekend.  We got to visit Ronan’s younger brother for the day, starting with meeting him in town for Mass.  What a glorious day it was!  I had hoped to take Ronan with us, but Willem hadasked if I’d go to the movies with him after church and lunch.  Ronan has been to the theatre several times, but he likes to leave almost as soon as he gets there.  I didn’t want to risk Ronan being bored out of his mind, so we girls left while the fellas stayed home.  

We ended up not going to the movies but got to explore parts of the town.  Then we enjoyed a sunny afternoon on campus.  One of my son’s college friends joined us for the walk, and then many other of his friends sat with us for dinner.  I love that they gather for meals together and that they’ve become a positive support system for each other. 

My son is thriving, and I am grateful for that.  

Even though it was just a few hours, we crammed in a lot of visiting that day.  We got to talk about school, video projects Willem’s working on, and getting ready for the next round of scholarships he needs to apply to.  It was such a good day!  Ididn’t want to leave, but before it got too dark, we said our goodbyes until next time before heading to the car. Right before we got to the parking lot, I got a work email that I had to answer.  After answering it, I had to send a bunch of emails and texts to co-workers.  I don’t work on site on weekends, but I still have to pay attention to messages coming in, especially when they affectour program.  So, I answered as many messages as I could.  

My daughter waited patiently for me to be done messaging people and would be available to write anyone back for me when I could get us on the road. 

It would take a couple of hours to get home, but I’ve gotten to know the route well.  Part of it is familiar as it includes roads that we can take to get to the hospital where Ronan’s specialists are.  The next round of visits for Ronan are just around the corner.  Those could cause some anxiety, but with meadows, mountains, vineyards, and beautiful farmland, I really love the drive and usually look forward to it.  

I don’t love driving it at night, though, so I was being cautious around the areas I knew could be a bit hazardous for drivers.  At about the halfway point when the major highway turns into back-roads, I encountered a jerk of a driver.  On a stretch of an unlit, curvy, hilly, tight two-lane road in the middle of nowherefarming area, a driver in a small black sedan pulled up behind me.  They pulled up so closely that I couldn’t see the headlights.  I was the only one on the road in either direction.  Knowing exactly where I was, I shared my distaste with my daughter and a plan. I said, “I’m going to pull over quickly to the turn lane and let this person pass.”  I felt very familiar with this section of road and knew that the left-turn lane extends about ¾ of a mile. That meant that I had time to safely move over, slow down a tad, and also get back into the travel lane before the next turn.  As I did all of that, the driver zoomed ahead. 

“Fine, I’d rather be behind ya anyway,” I muttered.

By Cathy Jameson

My husband and I got to go out last weekend.  Asked to be a special guest at a dinner about an hour away, I was able to accompany him for a fun night out.  While we were away, one of our trusted caregivers spent the evening with Ronan and one of his younger sisters.  Right before we sat down for dinner, I texted, “Hey, this is way fancier than we expected.  I’m going to put my phone down.  If you need us, call, don’t text.  I won’t hear the alerts for texts, but I’ll pick up if you call.”

Things back at home were good, so I didn’t need to worry about getting any texts or calls.  Ronan was doing his usual activities, which usually keeps him happy and settled.  Maybe it was that he saw us leave and was sad that we didn’t take him, but Ronan decided to be a little bit of a pickle for our helper.  When it was time for him to take the seizure meds, Ronan looked at them and then he knocked them on the floor.  Much like a cat knocks something over just to knock it over, that’s exactly what Ronan did.

One

pill

at

a

time. 

Each time he knocked one down, our helper put it back on the counter.  Without skipping a beat, our helper said, “Oh, let me get that for you,” as she picked them up off the floor.

What a pickle he was being!

He’s starting to be more of a pickle other times, too.  I don’t usually support that kind of behavior, but Ronan’s being more interactive with the siblings, and I loved that!

Don’t get me wrong, we’re teaching Ronan to be kinder, but it’s impressive that he can be a pickle by choice.  Take his youngest sister’s latest frustration.  I made a baby blanket when I was pregnant with my firstborn that matched a crib bumper that I also made.  When they were all younger, my other children had gotten to use the blanket.  It had been put in the linen closet for years until sometime last summer.  I must have been sorting through the closet when Ronan’s youngest sister asked to keep it on her bed.  Sure!  It’s a really sweet blanket with really beautiful memories for me.  Well, Ronan saw it, too, and it was war.

He remembered it and wanted it.

She found it and wanted it.

I watched to see what would happen next.

One day the blanket would be on his bed.

Another day it would be back on her bed.

When he takes it from her room, he hustles to his room and tries to hide it with his bed covers.

When she discovers it missing, she finds it and then hides the blanket back in her room.

The back-and-forth typical sibling antics make me smile.  It takes forethought, strategy, and effort to be a pill!  In instances like that, I will quickly console the typical sibling that’s been annoyed, but I’ll also secretly cheer for Ronan for getting more involved in the kids’ world.

Another time Ronan got caught doing something he wasn’t supposed to was with Willem during Christmas vacation.  While home from college, I asked my younger son to watch my older son when I went to work one day.  More than able to be a caregiver for me, I still prepped everything the boys would need for the day.  That included meals and extra snacks.  My kids love snacks, including Ronan, so I made an extra bowl of cereal that he likes. 

But Ronan didn’t want the gluten-free cereal I left for him.  He wanted the tastier one the kids had.  So, while Willem went to the garage to grab something, Ronan quickly got the other cereal box, opened the box, and reached into the box.  Hearing his little brother round the corner back into the kitchen, Ronan took his hand out of the box, put the box down and stood as still as still could be – then he quickly opened the drawer where we keep the bowls and took out one, two, three, four bowls and waited to see what would happen next.  Next, came peals of laughter.

Okay, bud!  We know you’re hungry; just ask for help, and we’ll be right there to help you.

We’re always ready to help, even when he’s being a pickle.

By Cathy Jameson

A nurse from the one of the agencies that provides services for my son calls every 3 months. “Hi, Mrs. Jameson.  How is Ronan?  Does he need anything?  Do you need anything?”  Those calls are quick because Ronan’s been doing fine, he doesn’t need anything, and I don’t need anything either.  

Every six months, the nurse calls with scripted questions that keep us in the system and qualified for continued care.  Once a year, she visits us.  I’m always prepared for those visits and have appreciated the extra medical resources her agency can offer.  Besides resources, they can also offer medical supplies.  Ronan’s benefitted from having those items, for which I’m grateful.  Before the last home visit, I thought about what new items he might need but couldn’t think of any.  I also looked back at my notes from previous visits and jotted a few things I wanted to ask about.  For the next visit, the nurse who had met with us for years wouldn’t be joining us.  It would be a new person joining Team Ronan.  

I’m happy that the nurse who’d seen us through a few issues was moving on to something else.  But getting new people on board after all the things we’ve had to manage, and have successfully avoided, didn’t feel comfortable.  It felt like work.  Keeping my child safe and healthy is my job, so I got to work doing a little bit more prep work for the in-home visit. 

The day the new nurse came was less stressful than I thought it would be.  She was kind, lovely, and had years’ worth of really good notes from the nurse we’d know for years.  She even knew that flu shots are something we don’t care for.  That topic would be the tell-tale sign – if she hassled me, I knew to do more listening than talking.  If she didn’t, I’d still do more listening than talking, but I’d be open to hearing what she had to say.  With Ronan no longer under 18, the questions on his forms changed, including social/emotional needs.  No longer were they about which toys and activities he liked to do.  They were questions you’d hear an adult being asked.  

I have a good poker face, so didn’t let her know the first question shocked me:  

Does Ronan feel safe at home?

Yes. 

[Geez, lady. What a question!  He loves being home. LOVES it.]

With his special needs, I’m going to say he’s not out partying.

Right. 

[WHAT?!]

He’s not smoking?

Nope. 

[Good grief.]

Or drinking? 

No.

[Except this one time…]

The more questions she asked, the more one-syllable responses I gave.  It satisfied her checkboxes, and it secured care for my son for another year.  With that done, I thanked the new nurse for her time and filed the paperwork. On her way out, she could see that Ronan was happy, healthy, and safe with us at home.  

Last Friday, we took Ronan out for dinner just because.  Well, mostly because it had been an incredibly busy week for me, and I didn’t want to make dinner.  We went to our usual place, but forgetting it was Friday night, the place was packed.  We went to another restaurant that we know Ronan enjoys.  Again, we saw a line out the door of patrons waiting for a table.  We drove farther into town, but four times that evening, we left because the wait was so long.  The fifth place, another go-to local eatery was open, empty, and perfect!  Ronan loves it there, and we loved seeing him so happy.  

Once dinner was over, we headed home.  We didn’t have the energy to do anything else.  And Ronan didn’t seem to mind going straight back.  Walking into the house with his little sister, he smiled.  He was home.  And he was incredibly happy to be there.  

Keeping him happy, healthy, and safe.  It’s my job, and I’m very happy to keep doing it.  

Cathy Jameson is a Contributing Editor for Age of Autism. 

###

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By Cathy Jameson

I love our dentist.  She’s a friend of the family and greets us all like we are the biggest superstars on the planet when we see her.  She’s watched my kids grow and has the best compliments for each of them.  When she sees me, she gushes about how beautiful and wonderful a mother I am.  I don’t always feel like a beautiful, wonderful mother, so I tell her I’d love to put her in my back pocket and take her everywhere, especially when I’m having a bad day.  I’d take her out and let her fill me with compliments to help boost my spirits.  It’s a joy to schedule all of our dental appointments because she’s full of positivity every single time I see her.

Except at my appointment last week…

That’s when she shared that another patient of hers, also a mother to an adult child with developmental delays, was experiencing some frustration.  It wasn’t that this other woman’s child wasn’t receiving services.  They are.  It wasn’t that this adult with special needs wasn’t thriving.  She was.  It was that this other mother is aging.  And she’s much closer to the end of life than the beginning.  She carries a heavy worry like so many other mothers carry – when she’s gone, who will take care for her adult child who needs care 24 hours a day 7 days a week?  Her close friends are elderly as well and physically cannot help.  Her younger family members have said they would not help.  I couldn’t speak, not just because my dentist was doing her exam on my teeth, but because I was stunned to hear that this other mother had no family support.    

After the dental exam ended, I said, “That’s why we have to live forever!”  My dentist agreed.  While not an adult child with special needs, she’s helping provide some of the round-the-clock medical care for an elderly family member who lives far away.  We both commiserated at how helpless we sometimes feel when it comes to being physical there to assist extended family.  But we also stated that we’d do whatever we could for them, including from a distance, while we’re still living. 

We talked a bit more, shared a bit more, and she ended the conversation with that positivity I always love to hear.  After telling me about a recent trip home to see her family, she shared, “I’m definitely blessed…” 

I told her that I was, too.

By Cathy Jameson

Ronan’s younger brother has been home on his college break since mid-December.  It’s been a big blessing to have him home.  Besides having our family feeling a little more complete, with some hiccups in my caregivers’ schedules, Willem could quickly jump in and provide care to Ronan while I went to work.  I didn’t like having to task my younger son to watch my older son on those days, but Willem would tell me it was okay.  He hadn’t made too many plans over the break, so he had the time. 

I appreciated his honesty and also his availability. 

Each of my children have a unique relationship with Ronan.  The girls are loving, kind, and will do anything for him.  Willem is also loving, kind and will do anything for him.  But Willem does other things, more brotherly things that you might see all sorts of other brothers doing.  He likes to egg Ronan on to do rough and tumble playing.  He gets Ronan up more to dance with him and to play fight with him.  He pushes Ronan higher in the swing than I would, and he pushes Ronan faster in the adaptive stroller, too.  With his delays, Ronan doesn’t always respond to the people he’s with, even to the fun stuff.  But that doesn’t stop the little brother from wanting to be with the older, developmentally delayed, silent brother.  Sometimes, the lack of an immediate response makes Willem want to do more – to encourage Ronan, to interact with him, and to do things others easily would’ve given up on.  With Willem in college now, I have loved the extra time the brothers have had together this past month. 

The only time Willem shared a tiny hint of disappointment while he was home was when I came back from work and found out that Ronan had been a rotten pickle to his little brother.  “Mom, I tried to feed him his lunch and he wouldn’t take a bite.  I tried to take him to the bathroom, but he signed no, no, no.  I knew he needed to go, so I approached him a different way.  I got him to come with me to the bathroom, and as soon as he sat on the toilet, of course he peed.”  I could hear some frustration in his voice, and I felt terrible that I’d tasked him with this personal care.  My kids can handle the type of care their brother requires, but they, like us, need a break from some of it.  I told him, “I’m sorry your brother was being a pill.  Please plan something with your friends who are also home on break.  I want you to enjoy the last few days before you head back to school.”  Willem told me he was fine, that he knew Ronan didn’t mean to be difficult.  But I still wanted him to get out of the house and to enjoy the company of friends. 

So, he did.

By Cathy Jameson

I booked our airline tickets months ago.  With how crazy the world has been, I made sure to buy insurance.  We’ve had to cancel trips before due to illness.  It’s something we hate to have to do, but the insurance has helped us be able to rebook a trip when one of us is sick.  A week or so before our trip, I thought I may have to use it.  I couldn’t stop coughing.  I had no fever, no drippy nose, and no other symptoms for weeks.  Whatever I’d caught before Thanksgiving, though, caused a bunch of congestion to linger in my lungs. 

No way did I want to be that person on a plane cough, cough, coughing across the country. 

If it didn’t clear up, I was considering canceling our Christmas plans.   

Thankfully, I didn’t have to do that. 

On our way home from our trip west, I sat back and smiled.  The coughing had finally subsided, and we had a wonderful seven days away with family at Christmas.  Like before, Ronan traveled like a champ.  He even went – and stayed – at Mass with us!  We’d packed in a few busy days while we were away, and we made sure to enjoy some quiet stay-home days also.  The times the kids wanted to do more, Ronan and I stayed behind and rested.  Knowing Ronan’s needs can be great, our hostess gave us whatever time and space we needed.  It was a joy to be able to get away from it all, and we didn’t want our visit there or our vacation to end.  It was time, though. 

So last Friday, we packed, prepped, and pushed on. 

It can be quite a production when all 7 of us are traveling, but there’s also quite a bit of excitement, too. 

Even so, I was looking forward to sitting and relaxing on the return trip. 

Settled in one of the last rows of a very full flight, I had almost five hours to just sit.  To relax.  To enjoy whatever movie I wanted.  But first, I wanted to rest.  We’d be landing at midnight and getting back home close to 2am.  Knowing Ronan, he’d be up way too early, much earlier than the rest of us.  I needed a nap just thinking about how much of a jolt our first morning home could be.