Best of: Syllabus For Your Life with Autism

Note: Cathy is enjoying a weekend off with her family. Here's a great post for back to school. 

ByCathy Jameson

As I was sitting in Fiona’s classroom during the Open House at her high school last week, I glanced at the syllabus that her AP History teacher had just distributed.  The thorough explanation of every topic, types of assignments and class expectations were intense.  At 3 pages in length, it was intimidating.  After reading over each page though, and after hearing the teacher explain his goals for the group, I began to feel a somewhat relieved.  The information presented gave me a better understanding of why the course is in fact intense—besides learning as much as they can, teacher and students will work together to prepare to take (and pass!) the AP exam scheduled for next spring.  It’s an important exam.  Those who score 4s or 5s are eligible to earn college credit.  I’m proud of Fiona for thinking she’s ready for such a challenge.  If she can follow the extensive list of requirements and meet the expectations that her teacher described, I have no doubt that she will do well. 

Over the course of the evening, I was given a few more syllabi to read.  They were not as detailed as the AP course syllabus was, but Fiona’s teachers were thorough in presenting their class goals, assignments, and expectations.  Half-way through one session, I thought to myself, if only autism parents had a syllabus.  If parents knew exactly what to expect and when, imagine how much easier some of life with autism could be…

Course:  Life With Autism

Course Description:  The Life With Autism course is an open enrollment course.  It begins as soon as you find it necessary and will remain open and available with no predetermined end date.  The course focuses on the affects autism has on the individual and those closest to him/her.  Topics covered include typical behaviors, typical struggles, and typical situations an individual with autism will experience.  Students in the course will use a variety or resources such as books, journals, and the Internet.  As each person brings a unique set of gifts to the class, you may also be asked to be a resource.  Anyone who is caring for a child with autism may enroll in Life With Autism.  This course is geared toward parents of children on the autism spectrum, but anyone who is teaching a child on the spectrum or who is providing therapy to an individual with autism, and anyone who is curious about the spectrum disorder, may also enroll.  Since autism can be quite costly, the fee for this course has been waived.

Location:  There is no designated classroom.  Students will learn and experience autism wherever they or their child may be – at home, school, church, and assorted community settings.  

Scheduled Class Time:  24/7

Step-by-Step

By Cathy Jameson

I had a meeting last week with some of Ronan’s people who help coordinate some of his services.  When we coordinated a time to go over everything, one of the gals made sure to mention that it could be a very long meeting.  It was.  The agenda included a review of what Ronan can do.  It also included what he can’t do.  I had to answer a slew of questions that covered life skill, daily living skills, and safety skills.  As the parent of a special needs child those kinds of meetings aren’t unusual, but they are never fun. 

Friday afternoon, I was asked question after question after question.  Here we go, I thought.  Time to see how delayed he is according to their scale.  Half-way through the meeting, it seemed like the theme was Ronan Can’t ____ (fill in the blank with any number of skills he absolutely cannot do) Independently.

But, because it takes several steps to accomplish a particular skill, Ronan got some credit for being able to do some of an activity:

Can Ronan take a shower unassisted?  No.

Can Ronan identify hot and cold?  No.

Can Ronan turn on the water?  Yes! 

Kudos to the kiddo for knowing step 1.

Can Ronan make a meal?  No.

Can Ronan set the table?  No.

Can Ronan indicate that he is hungry?  Yes!

And he tells us that he’s hungry through his signs, by taking a bowl (or 7 when he’s really, really hungry), or by taking out the food that he wants to eat. 

Even though it was hard to answer question after question after question, by the end of the meeting I was able to reflect on what Ronan can do.  My favorite portion of the intake questionnaire had to do with family:  Can Ronan identify his family members?  Can he write their names?  Can he call on family for help? 

Being non-verbal, Ronan may not be able to actually call to them, but he knows we’re all here to help.  I see that when his big sister lovingly calls Ronan over to help him begin his bedtime routine.  I hear that when his little brother happily changes out a movie for Ronan as soon as one movie ends.  I cherish that when I see his two little sisters giggling gleefully out the door as they accompany Ronan on an outing to make sure he will be able to navigate through the community better.  Unfortunately, Ronan isn’t completely ready yet to navigate the community on his own.  That’s been proven with past wandering attempts that he’s made.  I was reminded of those on Friday when safety skills were brought up in the meeting:

Can Ronan plan an outing on his own?  No. 

Is Ronan aware of danger?  No.

Vaccine Law and School Exemptions

By Cathy Jameson

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

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

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

Guys!  XYZ district is saying that shots are required for school entry.  Shall we go school them?  

Photo credit:  Google Images

An Infinity of Summers

By Cathy Jameson

An article that people were posting on some social media pages last week caught my eye.  The tagline read, How many summers do you have until your children are grown?  Typically, it’s 18 summers a parent will spend with their child before that child ventures off into adulthood.  If my son and I had only 18 summers to spend together, we’ve just got 4 more to go. 

Four more summer vacations. 

Four more family summer road trips. 

Four more lazy summers before high school graduation, college, and independence. 

But my child’s not typical.  Our summers, like every other season of the year, are very different than those of his peers.  Half-way through is teenage years, Ronan’s very much delayed.  Non-verbal with regressive autism and seizures, he’s more dependent than other kids are. 

On constant watch – for both seizures and the potential for wandering – we still manage to have fun.  Outings to the mall, the park, and the pool happen, but only after doctor appointments and therapy sessions are over.  I’d love to have a break from it all, but with as many skills Ronan is still working on achieving, appointments and therapies are a year-round occurrence. 

Where other children and their families can change up their routine, Ronan thrives on keeping things the same.  We do get to venture a tad from the norm, like when we went away last month, but those adventures require a lot of “the norm” to accompany us – favorite books, waterproof bedding, food items, and entertainment, we bring a lot of Ronan’s everyday things with us when we go.  While the surroundings may have been different, having the “comforts” of home helped keep him calm during the transition to a temporary summer routine.  Without that calm, vacation – and the relaxation the rest of us were able to experience, wouldn’t have happened.  We’ll hope for a repeat of that whenever we can schedule another getaway. 

For the next four summers, Ronan will continue to be carefully watched.  He’ll be monitored for seizures and heat intolerance.  He’ll also partake in the usual academic opportunities and therapies we schedule throughout the summer, too, so as to maintain consistency.  It’s not how I imagined each June, July, and August would be, but it’s what I need to do to keep things going for him and for us.  Of course, we pray and work toward a miracle, but if things continue as they’re going now…

Ronan won’t likely get his permit next summer. 

He won’t be working on filling out college applications the following summer. 

He won’t be paling around town with his best guy friends looking for fun stuff to do in town either. 

The siblings are aware of this and generously give me and Ronan the time and space needed to keep his days as stable as possible.  They don’t always like that they’re missing out on what their friends are getting to do, but they understand that Ronan’s special needs cannot be ignored.  The older they get, finding a balance for them hasn’t been easy, and some days, they will vocalize some of that disappointment.  They’ve been so patient with their brother for such a long time now.  Never ever blaming him directly, they’ve learned how to deal with how much of my attention is taken up by Ronan, his appointments, and long list of needs.  I’m surprised (and thrilled!) that they have been as understanding as they have been. 

Remembering Dan – Six Months Later

By Cathy Jameson

The kids and I celebrate half birthdays.  We don’t do them up like we do a regular birthday but six months after a birthday, we commemorate the day with an extra hug and a half a gluten-free cookie or cupcake (or half a gf-granola bar if there are no desserts in the house).  It isn’t a major celebration but a fun one that reminds us to look how far that child’s come from their last birthday.  It gives us a chance to dream about how much more growing, learning, and living they’ll get to do before their next birthday comes around, too. 

When I glanced at the calendar this week, I remembered that almost six months has gone by.  We won’t be celebrating a half birthday this week, but we will remember something else.  It’ll be a day of reflection, not of treats, because something incredibly sad happened six months ago. 

We lost a writer. 

We lost an author. 

We lost a powerful voice. 

We lost a friend. 

Six months ago this week, we lost Dan Olmsted.  It’s been a short six months, but it’s also felt like a long six months.  We began to create a new routine without him.  We began the healing process.  We remembered, or are at least trying to remember, to keep going in a forward direction.  That’s been hard because there are so many more things I wanted to know from Dan, to read from him, and to ask him. 

He and I had been able to get together a few times, for which I’ll always be grateful, but with how busy life got for me, those meet ups weren’t often enough.  I’d always been able to send Dan a message though.  I’d email him when I’d read something of interest or when I needed to hear a word of encouragement.  I hate that I can’t send a quick email and get an even quicker reply back from him now.  He was always available to me, as he was to a lot of other parents, and never made me feel like I was a bother. 

Available, knowledgeable, and kind.  Dan was extremely good at what he did.  And I miss him so very much. 

Some days, I still can’t believe that he’s gone.  I know that a lot of us here still miss him so.  In promising to keep his memory alive, I wanted to share something that I’d written after friends and family had gathered to remember Dan, his life, and the work he’d done.  I’ve edited it a tad for today’s Sunday post:    


"The paper crane.....a compelling symbol for hope, love, honor, and peace."

Avoiding Risky Situations

By Cathy Jameson

When my kids’ sports seasons ended this spring I was glad for the break.  Don’t get me wrong; I love supporting my kids and seeing them excel on the field and on the court.  But the late afternoon practices, the travel time to away events, and the later-to-bedtime evenings took a toll on all of us.  When the seasons ended, and when summer vacation finally arrived, I soaked in all the extra time that I wasn’t running here, there and everywhere. 

That respite lasted all of about 3½ weeks. 

My oldest had fall sports on the brain long before last school year ended.  She’s been dreaming about being back on the court for months now.  I love her enthusiasm and am her biggest cheerleader. I promised to make sure she would get to some of the practices when the summer schedule was announced.  I was all set to add those to the family calendar again earlier this week, but before getting back into the swing of things, Fiona had to get a sports physical.  Not usually covered by insurance, other parents in the past had let me know that we could go to an urgent care or walk-in clinic to get that exam done.  Since it would take a while to get an appointment with our regular doctor, I decided to go to a walk-in clinic.  But which one? 

Do I go to the one where a young doctor attempted to scare me with outdated third-world country statistics?  Do I go back to the one where the charge nurse accused Ronan’s little sister of making herself wheeze and making her throat constrict on command when her throat was in fact actually closing?  Do I go to the one where the nurse was hell bent on selling me the HPV vaccine for my daughters when I’d already politely declined the vaccine several times?  Or do I go to the one where they wanted to give my daughter a flu shot when the reason for our visit had nothing to do with the flu or the flu shot but everything to do with a potential bone break? 

Decisions, decisions.   

Since vaccine discrimination  is alive and well, I wanted to be careful with whom I chose.  While one place offered a deep discount for the physical, I went with my gut and headed to another place.  We’d had success the year before for a minor medical issue.  When we’d used their services previously, the medical staff was attentive, polite and attended to the medical condition that my child presented.  Not only that, vaccines were not even discussed.  That’s because vaccines had nothing to do with the issue at hand.  Imagine that!  Where other urgent care places we’d been to took a ‘grab and stab’ mentality (you’re here, you’re ‘behind’ on vaccines, let’s go ahead and catch you up), this group focused on the medical situation that brought us into the place.  Hoping for a repeat experience, I said a little prayer before we got to the place, “Lord, if things get heated, as You know has happened in the past, please help me to know what to say and to then say it with charity.  Amen.”

Prayers answered.

The nurse recognized us and was welcoming as we walked in.  Holding nothing back, I felt confident in sharing the personal and medical information that was asked of me.  I don’t always get to do that.  Other providers who’ve been pushy and one-sided make me clam up.  They get the basics or a carefully worded statement from me about my child’s medical history or vaccine status, and that’s it.  I’m always honest.  It’s just that lately, with how closed-minded some people are, and with how threatening some providers can be, I’m more judicious in how I reply. 

Thankfully, we ran into none of that last week.  And since Fiona has no pressing medical issues that would restrict her from participating in athletic activities, the exam was over almost as soon as it had begun.  I paid a little bit more than I wanted to for it, but we walked out with what we needed and without being heckled or belittled in any way. 

Breath of Life

By Cathy Jameson

I’m constantly being reminded of some simple prayers that Ronan’s siblings have been saying for years.  Nightly, and even during the day when we get a quiet moment, I hear the children pray:

Lord, help him to talk.

Lord, help him to communicate.

Lord, help him to please play with me.

Technically, the prayers are being answered.  They’re just not being answered like they’d envisioned.  The siblings hope that their prayers would bring forth complete healing, 100% restoration of speech, and being “all caught up” to where they are developmentally.  A word here, a successfully used sign or gesture there, and playing next to where they play is nice.  But they’d like more.  Instead of getting discouraged, they up their prayer game. 

We should ask other people to pray for Ronan!

Done.

We should ask the saints to pray for Ronan, too!

Done.

Wish You Were Here

By Cathy Jameson

Last week, I shared a post about our family’s summer vacation.   Despite the short business trip that took my husband away for a few days and that exhausting night that Ronan stayed wide awake until 3am, it was one of the best family vacations we’d ever had.  I got to sit by the sea, the kids reconnected with friends they’d made last year, and Ronan ended up enjoying himself while we were up north. 

I’m always glad that Ronan is able to adjust to the major changes that come with a road trip.  The long drive, the new scenery, the drastic changes to his routine - it’s encouraging that he can adapt.  It isn’t always an easy transition going from our home to staying temporarily at someone else’s house.  With Ronan being able to adapt last week, like he did on a previous vacation, it keeps me hopeful that we’ll continue to be able to go away as a family in the future. 

We should all be away again this weekend.  Our oldest niece is getting married.  But a back-to-back road trip just wasn’t in the cards.  Autism helped destroy that plan.  We could’ve certainly tried to get all 7 of us there, but a 12-hour car ride with Ronan on Friday plus a 12-hour return trip on Sunday didn’t make sense.  That, plus having to spend two nights in a hotel instead of in the comfort of a friend’s house (who absolutely understands and doesn’t mind children with autism staying up until 3am) was not possible. 

Ronan hasn’t stayed in a hotel in years.  The last time he did, things didn’t end well.  Not only did he stay awake till all hours of the night, he’d stayed up and laughed most of the night, too.  After the evening shenanigans, it was no shock that he’d be exhausted and miserable the next day.  Signing “no” to the proposed activities or “home” when we asked what he wanted to do were clear indicators that he was ready to beat feat far away from the fun the rest of us were trying to have.  Not wishing for a repeat of that weekend away, which was similar to two other trips that required hotel stays, we brainstormed different options for this weekend. 

After going back and forth with ideas for several weeks, we knew that our options were limited.  We discussed all of them and every single potential scenario we could think of.  With how formal this weekend would be – the church, the ceremony, the vows, the reception, the professional photos, we were left with one option – split up.  Since it was a niece on my husband’s side of the family getting married, we decided that he’d go to the wedding.  Flying was out of the question, so we planned for him to head south with some of the kids with him.  I’d stay home with Ronan and the others.  It wasn’t an easy decision to make, especially because some of us would be missing out on a monumental occasion, but it’s what our family had to do. 

It isn’t the first time the family’s had to split up.  We do that weekly for Sunday Mass.  We do that for Ronan’s siblings’ sports and school events all of the time.  But this weekend is one that we’d hoped that we could all be together to witness and to a bride and groom begin a new life together.  As much as I’d like to be there with husband and extended family to celebrate, it’s my turn to stay home. 

Home Away

By Cathy Jameson

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

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

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

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

As he usually does at home, Ronan bounced back.  

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

So I did.  

Unlike His Father

By Cathy Jameson

To maintain a joyful family requires much from both the parents and the children. Each member of the family has to become, in a special way, the servant of the others.   - Pope John Paul II

When we learned that our 2^nd born child would be a boy, both my husband and I began to imagine what ‘life with boys’ would be like.  Our first child, who was quite the girly girl at the time, was all about frilly dresses, dainty dolls, and the color pink.  The idea of adding another blessing to the family, and knowing that that blessing would be a boy, filled us with great excitement.  We imagined our future would include little blue outfits, Tonka trucks, and scraped knees.  We imagined rough and tumble play and making mud pies in the backyard.  We imagined we’d one day be sitting on the sidelines at a sporting event cheering him on.  We imagined all sorts of typical-boy milestones and super star achievements.  Never could we have imagined how far from typical our son would actually be. 

Our pride and joy, Ronan still is a super star.  He excels in areas that other kids have, but they’ve long surpassed the few capabilities he’s worked years to attain.  Dressing himself.  Feeding himself.  Entertaining himself.  It’s taken much, much longer for him to learn about the skill, to want to address the skill, and then to actually master the skill. 

Small steps and sometimes even smaller baby steps have gotten Ronan to where he is today.  While we’d both love for him to be able to catch up to where his siblings and age-mates are developmentally, we know that for Ronan to accomplish things, it has to be at his pace.  That can be hard. 

As many years into this journey that we are, the realization that Ronan is still so far behind can make us emotional.  We know that Ronan won’t follow in his father’s footsteps and tinker with cars or motorcycles.

He also won’t race 12 meter sailboats like his father did. 

He won’t be able to join the military like Daddy did either.   

See Something, Say Something

By Cathy Jameson

Over the years, I’ve heard wonderful stories from other parents about their child’s caregivers.  I learn that these other humans are kind, compassionate, and able to get the child to do things no one else thought possible.  I love to hear about those victories and those kinds of stories.  Unfortunately, other caregiver stories with not so happy endings have been shared by parents, too.  Those jaw-dropping accounts are shocking.  They are few and far between, thankfully, but even so, they can quickly suck the wind right out of me when I hear them. 

Some of those incidents have made the news.  Other times, the person or the facts about the abuse they’ve inflicted gets tucked away.  Not until that person strikes again do details about their past come out.  Withholding that information serves no one, especially the non-verbal severely affect child with autism.  I shed tears when I learn that a child has been harmed – either emotionally or physically – at the hands of another.  When it’s an adult who’s belittled, abused, or caused serious injury to a child with a disability, my blood boils.  And when it’s my child who’s been mistreated, you better believe I’ll make some noise about it. 

It recently came to my attention that an individual who’d been working with my child needed to go.  On paper, they were a perfect candidate for us.  In person, it was a different story.  Ronan got hurt.  It wasn’t physical, thank God, but damage was done.  That hasn’t happened often, but when it has, it’s made it very hard for me to trust people again.   

I will sometimes say, if Ronan’s happy then I’m happy.  Lately, Ronan had become increasingly unhappy, especially - and only – after some therapy.  He wasn’t the only one who’d grown increasingly unhappy.  I’d been getting a gut feeling that something was off.  When I would drive away after Ronan’s session had started, the pit-in-my-stomach feeling lingered.  I knew something had to give. 

Changes had been made, but Ronan’s needs continued to be overlooked and he was starting to get increasingly upset.  I’ve promised to care for my children, to love them, to teach them, and to protect them.  Protecting them, especially Ronan, has the biggest challenge.  I am his eyes.  I am his ears.  I am his voice.  He couldn’t tell me, ‘Mom, something’s not right.  Can you please make it better?’, but his behavior sure did.  Ronan took out his frustrations, and no doubt, lost a little faith in me after his desperate attempts to communicate his dismay during therapy sessions.  By the time I was clued in, it was too late.  The situation was beyond repair.   

A program we’d worked hard to create was slowly being destroyed by someone I’d trusted.  Having to address that problem and the person who’d caused the issue made me livid.  While this person gets to quietly exit our lives, I was forced to deal with the fallout.  Holding onto hope that we can move past the interruption and the pain, the burden I carry feels a tad heavier now.  It’s a terrible weight to bear, but if not me, then whom?  Certainly not Ronan!  He’s dealt with enough already. 

With Ronan’s needs as great as they are, though, I do still have to rely on others for assistance.  Their experiences, their referrals, and their qualifications are necessary.  They can easily make the process smoother.  But if they don’t truly want to help, or if they are only here for their gain, their assistance will be a detriment instead of a benefit. 

I am rendered speechless when I’m forced to deal with the ineptitude of an adult.  When that adult has all the makings of being a perfect, credentialed professional but who can’t see the amazing and incredible fragile human being placed in their care, I am reduced to a puddle on the floor.  Eventually, I pick myself up and begin to move forward.  I have to.  As much as I’d like to do everything on my own, I know that I cannot. 

Best of: Walk by Faith

Note: This post ran in 2010.

By Cathy Jameson

Dear Diary,

I had a scary dream last week. I was being hunted.  It was sunset in a state park and I sensed something near me. I quickly planned a quiet retreat from a medium-sized grizzly bear walking toward a picnic table. At first, I thought I could manage eluding the animal but when he spied me his fierce growl caught the attention of another sizable bear standing by a stream. Panic set in but I remained outwardly calm.  I knew I had only a few minutes before I would either become a light snack or could plan a successful escape.

As I backed up the trail, I realized I was not alone—most of my family was also with me.  Ronan wasn’t there but my husband and other children were. The bears multiplied in number and we now had to escape six hungry, wild bears.  Soft light from the window of a small building shone down the path. My husband led us to an old lodge built on stilts. We hoped that would be a refuge because there was no where else to go but into the bear’s territory.  We tiptoed up the steps and reached for the doorknob. The lodge, whose wallpaper dated back to the 70s era, had wall-to-wall shag rug. It greeted us as we tumbled into what we hoped would be a safe haven.

A woman sat at a metal desk with an IBM Selectric typewriter. She didn’t see us or hear the major sigh of relief we exhaled as we scrambled into her writing nook. Pages of her book, an expose, retold of newly discovered cover-ups in the medical industry.  I barely glanced at this minor character in my dream but thought highly of her accomplishment—her efforts were going to help thousands.

Meanwhile, back at the now darkening state park…six bears watched us and lumbered toward the lodge. Another wave of fear set over me. I couldn’t lock the door. It had been solidly secure prior to our arrival but I had loosened the hinge in my attempt to rush in, find safety and slam the door closed.  I peeked through a sliver in the doorway that couldn’t be latched and saw another family standing at the doorway. Three people gingerly knocked also trying to hide from the doom and gloom that lingered below.  We let them in and stared at each other in fear. Glancing through the sheer curtain-covered windows, I saw silhouettes of another family, and then another. No one spoke but we knew we had to bring them in and stay safe from those hungry bears.

Diary, I was petrified! All the while, the woman at the typewriter continued to type. Her clickity clack was the only noise I heard. Soft light from her lamp and an old television set were her only other pieces of furniture. The TV was on but only static-filled stations were broadcasting with no sound.  The bears grumbled and stumbled below the lodge but never came up the stairs. I had a vision of one of the children getting too close to the smallest bear but physically shook myself to keep from continuing that notion. I began to feel confident as I glanced around the small room at the people in our midst. Again, my thoughts were: save my family, help these people, stay safe. And then, I woke up.

Why Not Autism Prevention?

Note: Ben Franklin would be shocked to find out that a diagnosis as life altering as autism is denied not only prevention, but cure too. Maybe it's all about the Benjamins?

By Cathy Jameson

We shared the cover of a book on the AofA FB page last week.  The book is being published by Skyhorse, a large publishing house headquartered in New York City.  The author is the parent of child with autism.  I haven’t had a chance to read much about the book yet, but when I saw the teaser I thought who better to share some insight than a parent knee-deep in raising a child with autism.  Dara isn’t the first parent to share their story in book form, but I believe hers could be well received.   

As usually happens when we share parent-driven resources, we got some hopeful comments.  We got some not so hopeful comments when that book announcement went up on the page also.  Just like when we don’t sugar coat the type of autism our children live, those who shared unkind remarks let us know exactly how they felt, too.  Sometimes we keep the not so kind comments visible for our readers to see.  Other times, they end up being hidden or deleted but only after a screenshot has been made.  

I wish I found these sort of distasteful comments made on public pages shocking, but I don’t.  I expect them to show up every now and then and especially when words like heal, cure, and prevent are mentioned in a posts.   

Heal my child.

Cure autism.

Prevent the rate from rising.

Say that about childhood cancer, obesity, or juvenile diabetes and efforts are lauded. 

If it’s cancer, we’re encouraged to fight it.

If it’s juvenile diabetes, HPV, AIDS or issues like homelessness, violence, sex trafficking, and poverty, we’re asked to end it and to race, or walk, to prevent it.

If it’s Alzheimer’s, Parkinson’s, HIV, or Leukemia, organizations ask us to help fund research to find a cure.  When it’s those diseases or disorders in the limelight, gobs of research money gets raised, A-lister celebrities lend a hand, and the public rallies at festivals, concerts, and at major road races.  But when we say heal, cure, or prevent autism like we did last week on our FB page what do we get?

Insulted.  Targeted.  Bullied.  

When Grandparents Visit With Autism

Kim's Dad with Bella in 2010

By Cathy Jameson 

My parents bless us in so many ways.  From spiritual support in the form of prayers, to physical support when they visit, I appreciate every single thought, prayer, and extra hand they offer.  A few days after they’ve arrived, I always ask my Mom, "What changes do you see in Ronan?"  On their most recent visit, she shared...

We had a bookend visit where we saw Ronan for a couple of days, then were gone almost a week, then saw him again for a few days.

On the one hand, I saw him give his big sister a two-arm embrace with big smile, an embrace she had to break off before he did.  On the other, he seemed to wake up lethargic with low energy and had no interest in his usual activities.  He also seemed to want to withdraw to his room and one evening, when called for dinner, he had apparently fallen asleep.

I always wonder, and will sometimes ask, "What changes do you see in me? in the siblings? in the family dynamics? in our household?"  I don't always want to ask those questions because sometimes I'm a hot mess.  Sometimes the kids aren’t getting along.  Sometimes, with our schedule being as busy as it is, our family is tripping over each other as we race out of the house in opposite directions for extended periods of time.  And because of that, sometimes our house is in disarray and would benefit from an army of merry maids to put things back together. 

I don't want to be called out for my messiness or be told that the children's behavior is less than polite.  But it's always good to get some sort of feedback - and when it's coming from my Mom, it's always accompanied with a gentle and well-thought out suggestion on how to make things better. 

This last visit, Mom offered the following thought about what she’d learned after spending more time with us.  But before sharing that thought with me, she shared a beautiful reflection that she’d written a few years ago.  I won’t share all of that, but I believe other parents and grandparents can relate to it so here is part of it…

And though she had not intended it, she would become my teacher.  I who held her hand and taught her to walk and talk, to eat and dress herself, to read and write, I learned from my daughter Cathy that love that is most challenged is the best love of all.

I have learned, when talking about or with a challenging child, to not label her as a "problem child" or to say "bad girl" when she does something wrong.  As God the Creator reminds us in Genesis, all He made is good, and we His children are very good.  It was a hard-learned lesson, especially with my headstrong, What-About-Me child.  I thank God that I accepted that lesson. What I appreciate about Cathy, her husband, and indeed all of Ronan's siblings is that they have accepted that Ronan is very good.

Religious Freedom Under Attack by Church Leaders

By Cathy Jameson

Thanks to Patrick Flynn for the title for this piece.  Some of our readers may have heard about Patrick before.  Polly Tommey caught up with him while the Vaxxed bus was in north Florida last month. 

Fast forward to 3:42:00 to hear Patrick’s story.  (If that link does not work, try to view the video here – fast forward to 3:42:00.

Ever since the Bishop in Patrick Flynn’s diocese declared that vaccines were mandatory in order to attend diocesan schools, Flynn’s been fighting to get his youngest back into school.  Never having a problem submitting an exemption for any of his children before, he was not willing to kowtow to the Bishop’s demands.  I’d been following the Flynn’s story because several of my own family members in the same diocese found themselves in the same position.  As luck, or the Holy Spirit, would have it, I ran into Patrick Flynn while I was in Florida two weekends ago. 

Only in Jacksonville for a short stay, I leaned over to my mother-in-law while we were at Mass and asked her, “Where do the Flynns go to church?”  She smiled and said, “Here.”  I whispered back, “Well, if you see him, point Patrick out to me.”  We didn’t see him in the church that morning, but as I crossed the street to the parking lot after Mass, there he was.  I asked if we could share his story here, and he said yes.

--

Cathy:  We learn so much from other parents here, so thank you for taking time to share your story.  Give us a little bit of a history as to what lead up to the filing of the lawsuit.

Patrick:  My wife and I had a son in Kindergarten in a Catholic School in Jacksonville, FL.  In 2013 and 2014 respectively, two of our other children graduated from the Eighth Grade of this same school.  We were also very active members of this Parish and 100% faithful to the Magisterium.

Happy Mother's Day!

NOTE: This is a "best of" from 2012.  Cathy has 5 kids and deserves a day off. And she has a post we're running tomorrow. So  much for that day off!   Happy Mother's Day, friends.

By Cathy Jameson

Dearest One,

As you open your eyes this morning, even if your day started at some ridiculous hour because of your child, I had a thought I needed to share with you:  no one but you knows what it takes to be the mother of a child like yours.  No one understands his health needs like you do.  No one prepares his enzymes, supplements or allergen-free foods like you have done for years.  No one sits through hours of therapy appointments like you have and will continue to do.  No one stays up late at night reading message boards discussing speech therapy, parasite protocols and IEP meeting strategy.  No one.  What you do for that child of yours is amazing. 

Today is your day.  Enjoy it.  Soak in it.  Revel in the attention.  You might be showered with millions of smiles accompanied with hand-made gifts from your typical kids.  You might receive flowers to brighten your day.  A box of chocolates wrapped just right will taste delicious as you savor its tasty indulgence.  Someone, or several someones are shining today’s spotlight on you.  Take it all in today.  Be that typical Mother you still dream of being to all of your children because tomorrow you will return to reality. A reality where no one truly knows what it takes to be a mother of a child like yours. 

Best of: Moms Know Best

We're pleased to share this Best from Cathy, who has the weekend off. Even Mom needs a break from time to time! Enjoy.

By Cathy Jameson

Moms,

Take time to read.  Ask the questions you need to ask.  Learn what your rights are.  Protect those rights.  And always, always trust your instinct.

xo, Cat

--

Moms are often told that they know their child best.  They hear that statement in the doctor’s office and sometimes by their child’s teacher.  When I hear it being said to me, I hold my head up high.  It’s as if someone has just given me a badge of honor, “Cathy, out of everyone here, it’s you who know Ronan the best!”  And it’s true.

In the past, when I was told that I knew Ronan and his needs the best I questioned why it needed to be pointed out to me.  Of course I knew my child.  I’ve spent the most time with him!  Of course I knew what he needed.  I evaluate Ronan and his needs daily!  It was a no brainer that I absolutely should be considered “the” expert on Ronan.  It’s not only what I was, it is who I have become.

Most people who would think to say to a mom that she knows her child best do so with the utmost respect.  But, I’ve found out several times now, that the “You know your child best!” statement can be delivered two ways.  The first way is done so as a compliment.  The second way it can be delivered is adversarial.  That shouldn’t happen, but it does.  It happened years ago to me. 

Blind and Go Seek

By  Cathy Jameson

I know I’ve mentioned it here before, but I am really proud of my kids.  They are not perfect.  Hardly.  But they are a lot of fun and pretty creative, too.  I love to see their creations and am in awe of how quickly and easily it is for them to think-outside-the-box when they play.  I encourage them always to think outside the box, not just when they play or when they’re trying to solve an academic problem, but for life in general.

I’m not sure what inspired them to play a game they call Bind and Go Seek, but it is absolutely one of the best games my children love to play.  It’s easy to play and could fill a whole morning or afternoon.  What are the rules?  Have fun, and be careful.  How do you play?  Imagine 3 of Ronan’s siblings giggling with glee as they tiptoe, scamper, and chase each other through the house.  Then, imagine the other sibling trying to keep up with the others while blindfolded.  So far, knock on wood, no one has been injured during a game.  They’ve grown closer to each other, albeit not permanently, but each game evokes stronger sibling ties as well as hours’ worth of laughter. 

One night, while watching the blindfolded sibling search for the others, I couldn’t help but think how helpless that child was.  Blind.  Unable to use clues in their environment they normally rely on, they had to rely on instinct and their senses.  Oddly, they didn’t think they were helpless at all.  Rather, for that night’s seeker, it was the opposite!  It was thrilling, exhilarating, and exciting.  With no light, with no sense of direction, and with nothing but her instincts as her guide, she confidently prepared to search for the others.

First, the countdown. 

Then, the bellowing of a friendly warning, “Ready or not, here I come!” 

Thinking about how many obstacles stood between her and her siblings, I cringed.  That didn’t stop that brave, little lady.  Gleefully with arms outstretched, and with a pep in her step, she set out to tag one of her sisters or her brother.

The game was afoot. 

Cat’s 2017 Autism Action Month Playlist

By Cathy Jameson

Previous Aprils have had down-in-the-dumps.  That’s happened when new autism rates were announced and when the media turned a blind eye to why the rates increased.  From what I’ve read over the last four weeks, the media has been somewhat silent on autism and vaccines.  They haven’t been as hard on parents like me either.  As the parent of a vaccine injured child who won’t stop talking about a vaccine-autism link, I’ll gladly take the break! 

Getting a break has been refreshing.  So has been choosing new songs to share during this year’s autism action month.  Like every April for the last few years, I rely on my music to get me through the month.  I listen to it on good days, on bad days, and on in between days, too. 

Here’s a short playlist of my latest go-to music.  Each song is dedicated to a certain group of people.  If I’ve left anyone out, my apologies.  If you have a song that you want to share, especially if it’s one that will get me and my kids dancing in the kitchen, please post it in the comments below.  I’d love to take a listen to what inspires you. 

xo, Cat

-

Bringin’ on the Heartbreak by Def Leppard

This song is for the Mom or Dad who is stuck - stuck thinking about how hard this is, how overwhelming this is, and how heartbreaking this is.  It is hard, it is overwhelming, and some days, it absolutely can be heartbreaking.  I know that because I sometimes live it.  But I believe that things can eventually get better.  On days that things don’t get better as quickly as I’d like, monster ballads like this one get cranked up really loudly. 

Kid Heart by ToddZero

For the parent who’s in the midst of frustrations and struggles, push through.  I know, easier said than done.  It may not seem possible in this very moment, but I have a feeling you will find your way again.  Draw on your strengths.  And if you fall down, don’t forget to get back up. 

 

Rise Up

By Cathy Jameson

After watching Ronan being hooked up for an EEG last week, I couldn’t help but think of this song.  I’ve written about Andra Day’s Rise Up before.  Included on a playlist  that I shared last April, I’ve added some new thoughts below. 

You're broken down and tired 

Of living life on a merry-go-round

And you can't find the fighter

But I see it in you so we gonna walk it out

And move mountains

We gonna walk it out

And move mountains

Ronan played this song one evening last year.  Cruising the internet on his own, I’m not sure how he found it.  Once I heard the song, it stopped me in my tracks.  Kneeling down to where he was on the living room rug, I closed my eyes and listened.  Tears streamed down my cheeks.  Ronan is nonverbal, but my goodness, he can still find ways to express himself.

When the silence isn't quiet 

And it feels like it's getting hard to breathe

And I know you feel like dying

But I promise we'll take the world to its feet

Hard to breathe.  Some days, when I can’t walk it out, it does feel like it’s getting harder to breathe.  But what I have to endure, and can eventually work through, is nothing compared to what Ronan goes through.  Take Thursday for instance.  It was Holy Thursday, a sacred day for Catholics like me.  Instead of it being a quiet, reflective Church day, I spent the day in a hospital with Ronan. 

Ronan made it through the lobby holding his Daddy’s hand.  He made it into the exam room, too.  But the moment he saw the hospital bed, the tangled leads, and the unfamiliar technician assigned to his care, Ronan fought us. 

He fought the staff. 

He fought being pinned down. 

He cried out in fear. 

He cried out in pain. 

He looked to me for help. 

He looked to his Dad for help.

He endured a great amount of agony.

And we were unable to do anything about it. 

Asking Questions About Vaccines and Autism

By Cathy Jameson

A few Fridays ago, I was able to get to daily Mass.  Always grateful for any quiet time I can get at church, I eagerly listened to the readings.  As usual, one of the scripture verses I heard smacked me over the head.  I love that feeling.  It’s one I’ve heard my whole life and hoped to being able to reference it in a future post.  Today’s the day to reference that verse.

You shall love your neighbor as yourself.  Mark 12:31

I’m active on a few message boards about the usual subjects: autism, vaccines, special needs parenting.  No matter what message board it is, the rules are the same.  They’re simple, too: be kind, be polite, be respectful.  One group that I’m a part of is different.  We follow the same simple rules, but the content typically discussed has absolutely nothing to do with autism, vaccines or special needs parenting.  So when I saw a post being made about those particular topics in that group, I perked up. 

Most of the members are young moms, many in their late 20s and early 30s, and live on the other side of the country.  Several of them are just starting their parenting journey.  Two Fridays ago, around 10pm my time, one of the young moms’ posts caught my eye.  She was asking about vaccines.  It wasn’t really a question, but more of a statement with a simple request, “I am seeing more articles like this one…it piqued my interest…it concerns me and made me wonder what more a mom like me needs to know…”

I stopped reading.

Which group is this again?

I thought this was the group that had nothing to do with autism, vaccines or special needs parenting. 

Confused, I scrolled back up to the top of the page. Huh. It was the group that has nothing to do with autism, vaccines or special needs parenting.  I sat up straighter, scrolled back down to the post, and reread the young mom’s plea.  She ended it with, “…I’m curious what you all think.  Thoughts?”

As long as I’ve been in that group, none of the women have discussed vaccines.  To say that this young woman went out on a limb bringing them up is an understatement.  She exposed herself, and what followed wasn’t pretty. 

It was an innocent post, but surprisingly, she got attacked within minutes of sharing the link to a new docu-series that’s about to air.

While I do have some things in common with these women, I don’t know them very well personally.  Most of the time when I log into the group, I lurk – that means I read more than I make comments.  Since I felt like I had more than enough experience on the topic that was just broached, I decided to reply and quickly crafted a response in my head.  It couldn’t come off too strong – this young mama needed gentle guidance.  It couldn’t come off too weak either – she’s putting two and two together on her own and needed to be encouraged to read more! 

Since I was typing on my phone and not a computer, it was taking me a little bit longer to write a response.  I’m glad I got my reply in when I did.  Seconds before, another woman chimed in.  Her comment was not as open-minded as mine would be, “This is not the right place to post that.  This is not the forum for a debate.”

The young mom replied that she didn’t see how her request for information was inappropriate.  Nor did she intend for it to be cause for debate.  She did however offer to remove the post if such a post was not allowed. 

No.  No.  No.

We’ve had plenty of OT (off topic) posts in that group in the year or so that I’ve belonged, but none like the one I saw that Friday evening.  I read her words as a request calling for honest thoughts, but with how quickly it was judged, it reminded me of another scripture verse – the one where Jesus states that prophets are not accepted in their native town. 

They rose up, drove him out of the town, and led him to the brow of the hill on which their town had been built, to hurl him down headlong.  But he passed through the midst of them and went away.  Luke 4:29-30

My Brother Has Autism: A World Autism Day Reality Check

By Cathy Jameson

Today is April 2^nd.  For our family, it’s not a day we celebrate.  For us, it’s just another typical day in April.  Typical days in our house include taking turns keeping a watchful eye on Ronan.  He’s 14-years old, non-verbal, and severely delayed.  Each day, we make sure Ronan doesn’t wander, we make sure when his diaper is full that it is immediately changed, and we make sure he doesn’t have any seizures.  If he does have seizures, like he did several times last week,  we make sure we’re ready to administer emergency medicine to make them stop.  It’s challenging, but we do everything we can to keep Ronan safe.  We also do what we can to educate others on how debilitating regressive autism can be.  Some people close to us appreciate how very difficult life is for Ronan and for us.  For that, we are so incredibly grateful!  For those who have zero understanding and who chose to insult families like mine instead, which has happened, no amount of awareness will help them understand just how debilitating autism can be.

--

As soon as Ronan’s little brother got in the car, he said, “Mom, I need to tell you something that happened at school today.”

“Sure, buddy. What is it?” I asked.

He said, “I don’t want to say it in front of the girls.”

A sinking feeling came over me.  My usual upbeat kid was visibly shaken.  “Okay.  Let’s get home and then we can talk.”

While Ronan’s little girls chatted in the backseat, Willem and I sat in silence.  Half-way home, he spoke up, “Mom?”

“Yeah, honey?” I said.

“I guess I can tell you now,” Willem replied.

“Are you sure?  We can wait until we’re home if you want,” I offered.

“No, I think they should hear it too,” he answered.

“I was in class and we were playing a game where we had to go up to the board and write the answer to a question the teacher asked.  It wasn’t my turn, so I was sitting in my chair when another kid walked past me on his way up to the board.  He came up to me and pushed me hard.  He didn’t say anything, just pushed me.  After he wrote the answer on the board, he started to walk back to his seat.  He walked near me again on his way back, so I asked him, ‘Why did you do that?’  He didn’t say why he shoved me but he said, ‘Well at least I don’t have a brother with autism.’  Mom, why would he say something like that?”

Dumbfounded, I couldn’t answer.

Taking a minute to process what I’d just heard, I asked, “So you didn’t provoke him?”

He said, “No.”

Easily I could’ve been filled with rage.  But what came over me was sheer sadness.  Then tears.  Then more sadness. 

I needed more information, so I wiped my eyes and quietly said, “Go on.  What happened next?”

Willem said, “I got really sad.”

“I bet you did,” I replied. 

I then asked, “Where was the teacher during all of this?”

Willem gave me more details.

“The teacher had his back turned when I got pushed, and he didn’t hear what the other student said to me.  My friends in the class saw that I was upset and asked me what happened.  Since they’ve known Ronan a long time, they were just as shocked as I was to hear this other classmate say something like that.  That class was almost over, so as soon as it ended, I talked to the teacher.  I cried a little bit when I told him what happened.”

Oh, my heart.  It ached. 

It's Heeeeeeeeeeere.

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

###

Aaaaand it's 2015.

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

By Cathy Jameson

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

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

An Autism Parent’s Vows

By Cathy Jameson

The high school spring sports season just started, so Fiona’s not getting home until almost 7pm.  As soon as dinner is over, the rest of her evening is devoted to studying.  Ronan’s big sister works hard both in the classroom and on the field, so when I found out she didn’t have school on Friday, in the midst of some errands I had to get done, I planned a girls’ day out for just the two of us.  We weren’t going to do too much, especially after we found out that the coach set up a last-minute practice session for the team, but we were going to make the most of the few quiet hours we had together. 

All was going as planned on Friday until Ronan had a seizure.  It wasn’t a big one, but no matter the intensity or the duration, seizures don’t just stop Ronan in his tracks; they have a way of stopping me in my tracks as well.

The seizure was quick, and within a few seconds, it was over.  Right before it happened, one of Ronan’s therapists arrived to the house.  She and another young therapist had a full day of activities planned for Ronan.  Instead of confidently walking out of the house like I usually do when these women arrive, I contemplated staying home.  Assuring me that they were able to do “seizure watch” for me – which includes knowing when to administer emergency meds should they be required, I tiptoed out of the house. 

As we drove away, Fiona asked, “They know what to do, right?” 

“Yes, honey,” I replied.  “They know.”

One of the young women has a sibling with epilepsy.  Having witnessed the havoc they wreak on her own family, seizures were not new and not scary to her.  The other young woman has been with us long enough to recognize not just behavioral changes but the physical changes that sometimes accompany Ronan’s seizure activity.  I told Fiona that I trusted our staff and that we could still go out.  Even though he was in good hands, I felt guilty leaving Ronan.  As tough as it was to walk away, that’s exactly what I did. 

Alike But Different

By Cathy Jameson

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

If only that were really the case.

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

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

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

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

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

Third Time’s a Charm

By Cathy Jameson

I’ve heard a similar response 3 times from 3 different people over the last 3 weeks.  When I hear something 3 times, I take it as a sign that I need to either investigate it or write about it.  Sometimes I’ll even pray about it.  Since the comments all stemmed around the HPV vaccine, which I’ve already investigated, I thought I’d take a stab at writing about the things I’ve been hearing.

We still vaccinate…well, except for the HPV vaccine.  That one scares me, so I won’t let my daughters get it. 

I’m selective in what shots I get for my kids.  I don’t mind getting some of them, like the tetanus shot.  But I’ll never get the flu shot again, and I won’t even think about getting the Gardasil vaccine.  I think that one is dangerous.

I’m not sure really what to believe about vaccines causing autism because I trust my doctor.  He says there’s no truth to it.  My kids are current (on their shots)…all except for the HPV.  I don’t buy into that one.  We do all the others mostly because I don’t really want to know what I don’t know, if you know what I mean.

I’m glad that these parents know a little bit about the HPV vaccine.  The little bit that they know is enough to say no thanks.  But what I can’t understand is why they’re so quick to say no to one vaccine but not the others.  They readily accept all of the others.  But the others they’ve accepted, like the Hep B, the MMR, and the Varicella (chickenpox) vaccine have something in common with the Gardasil vaccine – they’re all made by the same pharmaceutical company, Merck. 

Maybe the other parents don’t know enough about that company, but I know enough about it to say no way to all of their vaccines. 

Merck has seen not just one but 2 other whistleblowers come forward about the MMR vaccine in recent years.  Claims of scientific misconduct, a cover up at the CDC, and faked data surrounding the testing of the vaccine’s efficacy as well as the altering of reports concerning an autism link have been brought forward. 

While official action to address and correct those disturbing claims has yet to be taken, it appears to be business as usual for the vaccine manufacturer.  Some who’ve recently received the MMR vaccine, including college-aged students, have come down with, and spread, the disease that the vaccine claims to prevent.  Instead of scraping that ineffective vaccine, which officials admit seems to have a waning efficacy, there’s now talk of adding a third dose to the schedule.    

Speaking of dose changes, Merck’s Gardasil protocol has changed.  Originally approved and marketed to young girls in 2006, vaccine campaigns strongly advertised the need for 3 doses in order for it to be effective.  In late 2016, we learned that the third dose would be dropped from the protocol.    Citing that “they didn’t have enough data on how well two doses works in older kids,”  other groups must have had “enough data” well before the US did.  The too many doses too soon was reported elsewhere over 2 years ago. 

All that readily accessible and concerning information aside, some parents continue to follow the schedule.  That means they continue to opt for Merck’s other vaccines.  They do so even though those vaccines:

-contain the same ingredients

-are dosed at similar intervals

-are administered by same provider who’s likely assured them that vaccines are safe

-warn of similar side effects and adverse reactions https://www.fda.gov/downloads/BiologicsBloodVaccines/Vaccines/ApprovedProducts/UCM426457.pdf  

-and are also included on the Vaccine Injury Table

-and have been part of billions of dollars’ worth of vaccine injury awards  made by our government, the same government who, in one breath, claims vaccines save lives and yet in another, says that they are unavoidably unsafe. 

Autism’s Super Heroes

By Cathy Jameson

Thanks to my son, Willem,  for drawing this image of the Iron Giant for today’s post. 

“You are what you choose to be.”

– Iron Giant

One of my daughters stayed home from school earlier this week due to an illness.  As hard as it was to see Izzy rundown and not feeling well, I welcomed the extra time that she and I got to spend together.  She’s my mini-me--creative, silly, and fiercely independent.  This week while not feeling like her usual perky self, I saw a different side of Izzy.  She was tired.  She was quiet.  She was reflective.  I enjoy her silliness, but I also loved the thoughts she shared with me this week while she was home.  

Without having to compete with the other typical siblings for my time, Izzy and I had some great conversations.  The neatest one was when she asked me, “Mom, who’s your favorite super hero?” 

“Ohhhh, good question, Iz!  Let me think…”

Thinking back to memories of watching Saturday morning cartoons, I immediately thought of the Super Friends from the Hall of Justice and Wonder Woman in particular.  I idolized her as a child.  With a golden lasso, an invisible jet and that snazzy red, white and blue get up she wore while fighting the bad guys, she was the epitome of super hero.  Now, as an adult, I appreciate Wonder Woman, but a different character came to mind the more I thought about Izzy’s question.

“If I had to pick just one, it would be Iron Man,” I told Izzy.  “No.  Wait.  I like the Iron Giant.” 

“Mom.  The Iron Giant?  Really?” Izzy asked.

“Yeah, Iron Giant,” I said.  “You know, from the movie??”

Looking at me skeptically while I continued, I said, “He may not be a DC Comic super hero, but remember he sacrificed himself to save the people and the town.  I’d say that takes guts.  And guts are what a super hero needs, especially when it’s up to them to help people and to protect them from danger.”    

“Welllll, yeah, I guess…,” Izzy answered.

Best of: New Life New Hope

By Cathy Jameson

I know it wasn't too long ago that I shared this post, but I wanted to share it again today.  Five of our friends are due in the next few months.  Years ago, I never used to be nervous when people announced that they were having babies. I love new babies!  But now, with how many challenges new parents face - including being bombarded with an unnecessary vaccine minutes after baby arrives, nervous is the best word to use.  Two of our friends are having what I call organic babies though.  

What's an "organic" baby?  It's a baby whose parents are opting out of some of society's pre- and post-natal standards. That includes vaccines.  Having learned things the hard way the first time around with an older child, they care not to make the same mistake with Baby #2.  Empowered to create a healthier environment for the new bundle long before they're due, I'm not nervous at all hearing about their pregnancies.  I'm actually very excited!  I hope you are, too.

###

The best things in life are unexpected…

Two of my friends are pregnant.  Both are in their 40s.  Both have a typical child.  Both also have a child on the spectrum.  Both have been enthusiastically congratulated.  I was happily shocked to learn of each of these pregnancies.  Then I was excited.  It’s almost as if these pregnancies are a first-time pregnancy.  With all that these Moms have already gone through, they sort of are first-time pregnancies.

No longer will Mom be timid about what typically happens in a regular OB office. 

She is so much more informed!

No longer will Mom let one person dictate all that she must do. 

She knows she has other options!

No longer will Mom allow a medical professional trump her mother’s intuition. 

She now has experience, knowledge and confidence on her side!

In each case, Mom knows so much more.  She knows how to ask for certain things.  She also knows how to politely yet firmly decline others.  Mom wants so many things to be different and better.  Yes, better.  Better for her and better for her unborn child.

Part of me is worried for my friends.  Being pregnant now, compared to ten or fifteen years ago when youth was on their side, will surely be different.  According to literature, they’re OLD.  Old means tired, exhausted, fragile.  But, knowing these women and their personalities, old is just an adjective, and would never be the first one I’d use to describe them. 

Both Moms are active in their other children’s lives.  They are both movers and shakers in their own communities.  They are both looked up to, respected and sought out for advice.  Who better than an already inspiring woman to bring new life…and hope to our world.

Sure, I’m a little worried for my friends, but I’m downright giddy that these two women are pregnant.  I’m more excited for these pregnancies than other.  They will be far different than that of the younger people in my life.  The younger people are having their first and second children and are clinging to every word, statistic and procedure their medical provider tells them.  Then, their children are taken to every appointment that the powers that be have dictated.  When pictures are shared, I see darkened circles under baby’s eyes and hear of food allergies, eczema, early speech problems and endless sleepless nights.  Red flags are waving violently behind baby but Mom has yet to connect the dots or see the destructive path her children are walking. 

Family Matters

By Cathy Jameson

What a week it’s been!  Press conferences, legislative meetings, and a $100,000  challenge - if you missed the latest vaccine/mercury news, catch up here.

--

The World Mercury Project team, as well as several members from Health Choice, did quite a bit of advocating in The District last week.  Hoping to be at a few of the events, I began to make preparations to join the effort.  Quickly glancing at our family calendar, I checked to make sure I wouldn’t have any conflicts.  Nothing was pressing.  With the kids in school and with Ronan’s team available to be work with him in my absence, I could go.  I was excited.  It had been awhile since I’d gone to D.C.   

The closer it got to the date, though, the less likely it was going to work out for me to be there.  I wanted to be with my friends and with the groups fighting for children like mine, but new family commitments that I could not afford to miss cropped up.  Brainstorming how to work things out, I tried to rearrange a few appointments.  No luck.  Unless I could bi-locate, it was not looking good for me to be in D.C.  I had to make a decision.  Was where I wanted to be more important than where I needed to be?  I knew the answer, but I stayed hopeful that something in our schedule would give.  It didn’t.  I sent regrets rather than confirm a reservation.    

Over the course of the few days that Robert F. Kennedy, Jr. and Robert DeNiro were making headlines, I popped in on FaceBook and other social media outlets when I could.  Friends were checking in and sharing details of what they were doing and with whom they were speaking.  Posting pictures of the exciting events, I lived vicariously through their updates. 

Scrolling through the newsfeed in the waiting room at the eye clinic on Wednesday afternoon, my youngest said to me, “Mommy, who are those people in the pictures?” 

I replied, “Oh, those are friends of mine.  They’re in Washington, D.C. right now doing some really neat things.”

“In D.C.?  Weren’t you supposed to be there?” she asked.

“Yep.  I was,” I said as we scrolled through a few more pictures.

“But you’re here…” she started.

“I am here,” I smile, “I get to be with you today instead.  Your new glasses were ready today, and I wouldn’t want to miss that,” I told her.

“I wouldn’t want you to miss it either,” she smiled back.

Autism’s Three Up/Three Down

By Cathy Jameson

When everyone is home and no one has to run out to a meeting or a sports event, we sit and eat as a family around 6pm.  That includes Ronan.  It’s taken quite of bit of work to have Ronan join us at dinnertime.  It’s not that he’s physically unable to join us.  He’s more than capable of sitting and eating at the table.  It’s just that sometimes, he’d just rather do his own thing than sit and hang out with us. 

Lately, with tons of work and with lots of encouragement, Ronan has not only joined us at the table, but he’s stayed for the entire meal, too!  He’s still non-verbal and doesn’t join in on the conversations yet, but he’s present for all the chatter, laughter, and silliness that our family dinners typically include. 

It’s been a real treat to have all 7 of us at the table.  While we’re gathered, my husband asks the kids how their day was.  A few weeks ago, he got creative and asked them for 3 Up/3 Down—tell us 3 positives and 3 negatives (or 3 challenges) you’ve faced that day.  From our teenager on down to our youngest, it’s been interesting to hear what’s a positive—a good grade, talking to a friend, or seeing Mommy at school for recess duty, and what’s a negative—studying for an exam, getting an owie, or thinking about Daddy’s upcoming business trip.  The kids’ convos have always been lively, but with these nightly 3 Up/3 Down prompts, we’re hearing more details about their day. 

The week before last, Ronan’s little sister, Izzy, wasn’t feeling good.  Unable to make it to school, she stayed home and rested.  While home, she got a peek at Ronan’s daily activities.  She also got a peek at the many challenges he faces, including ones that cropped up during his therapy session with our in-home therapists that morning.  That night at dinner, Izzy’s 3 Ups were about staying home from school, getting to see Mommy all day, and having time to hang out with Ronan.  Happy to hear positives even though she was still sick, I smiled.  I smiled until I heard her third down.  Her demeanor had changed by the time she’d gotten to it, and I could tell she’d been thinking about it all day, “He works really hard, but Ronan still can’t have a conversation with us.”  With a lump in my throat, I had a tough time swallowing the bite of food I’d just taken.

Since she wasn’t yet ready to go back to school, Izzy stayed home again the next day.  I asked her, “Izbiz, remember when you told us your 3 Downs last night and you talked about Ronan?  Can you tell me more about it?”  She said sure. 

She gave me a hug then started, “It’s kind of upsetting that Ronan doesn’t get to move around as much as we do.  He plays around on screens (Wii and Subway Surfer), which is fine because it makes him happy, but he doesn’t get to talk with us or join in our play – especially in our laughing moments.  I want him to join in with us.  But he can’t...”

Pausing, Izzy thought for a moment but didn’t continue.  I said, “It stinks, I know.  Can you tell me things Ronan can do?  I know you saw him do tons of stuff while you were home yesterday, things you don’t normally get to see because you’re at school.” 

Autism’s Brotherly Love

By Cathy Jameson

Thursday evening was not a fun evening.  Ronan began to have seizures right before dinner.  As the night progressed, they grew in intensity and then in frequency.  Coming one right after, I didn’t have to tell the kids Ronan was under seizure watch.  They’d observed the tell-tale signs themselves.  Ronan kept dropping things.  He kept tripping over himself.  He kept having erratic arm and leg movements.  Ronan caught a little break after dinner, but with how many seizures he’d had, and with how quickly they would start back up, I had an awful feeling that we’d have to resort to using emergency meds. 

Seizures terrify me.  I know they terrify Ronan’s siblings as well.  During situations like this, my typical children worry.  I don’t blame them.  Watching Ronan’s body be wracked as it is isn’t an easy thing to observe.  Desperate to make them stop, but feeling absolutely helpless, the siblings start to pray when he’s has multiple seizures like he did Thursday night.  Sometimes, they pray together. 

Mommy, I don’t know what to say…except maybe asking God to heal him? Yes, honey. Ask that.  

Dear God, please help Ronan. 

Lord, make them stop.  Please. This isn’t fair.

Their innocence, as well as the mountain of faith they possess, carry them through these scary moments.  Where I feel like I’m about to crumble on the floor in a heap, the siblings do everything they can to stay brave.  I try my best to not let them see how worried I am because they need my reassurance that things will get better.  Things usually do get better, but on Thursday night, things would go downhill first. 

As the seizures ramped up, my husband tended to Ronan so I could talk to the others.  Barking orders, I told them to get themselves ready for bedtime. They each had a few things to do before we’d start family prayers and before I had to make the decision to give Ronan the meds or not. 

Shower. 

Brush teeth. 

Get jammies on. 

Now. 

Move.    

I felt like a mean ol’ mom, but each of my children understands that in these moments, ones we wished would never happen but do, Ronan has to come first.

Within minutes, they were ready.  In that same amount of time, though, Ronan had had three more seizures.  It was time to prep the meds.  Ronan’s little brother could not hide the fact that he was crushed when I told him.  Trying to be upbeat he replied, “Okay, Mommy.”  Without hesitating, he added, “Do you need help?”

“Yes, actually, I do,” I let him know. 

Age of Autism’s Dan Olmsted – A Fine and Noble Man

By Cathy Jameson

Kids are like a litmus test.  If someone is a good person, they know it instantly.  If someone is a bad person, they know it even quicker.  My children got to meet Dan Olmsted a few years ago.  They knew immediately that he was more than just a good person; he was a fine and noble man. 

My children were as upset as my husband and I were when we got the news that a friend passed away.  My youngest cried and cried.  I did, too.  I have a few pictures of Dan at conferences and advocacy events, but the one I have of him with some of my crew is one of my favorites.  In it, my oldest is beaming.  She’s smiling because she knew just how amazing a human being Dan Olmsted was. 

Dan always made himself available, even when I had kids in tow.  I love that my children enjoyed Dan's company just as much as I did.  Their favorite memory is of us having breakfast with him at a little diner.  Full of excitement because they were finally going to meet Mommy's writing friend, the kids were beyond goofy that morning.  Not only that, they were excessively chatty, too.  I kept trying to hush them as we prepared to eat, but Dan was not bothered by their excitement nor by their extra chattiness.  He smiled so kindly enjoying the kids and their happiness.

While listening to them be so silly that morning, I smiled back at a man who exuded only peace.  Letting myself relax so I could soak in the moment, I realized just how big this moment was for my children - they were meeting one of my heroes live and in person...and were getting to eat breakfast with him, too!  It’s something that they won’t forget.  It's something that I'll never forget either.  

I'm honored that Dan generously gave so much of himself to me over the years - the helpful emails, the hopeful private messages, the countless positive and uplifting comments - he was so generous.  What struck me this week as I reread all of those exchanges is that no matter what we were talking about--be it Ronan, my family, autism, advocacy, upcoming legislation, or just life in general--Dan was always present.  In each and every communication we had, both in person and online, he was present.  He connected with me as if I were the most important person in the world to him. 

I am a better person because of my friend, and I know that my children are as well.  Always calm, always encouraging, and always so very thoughtful, Dan was, and will forever remain, a big part of our family's life.  I know that to be true for countless other families.  Dan opened a door.  He set the stage.  Then he gave us the platform.  He started a conversation about autism, even though he didn’t have to, he continued it.  Not only that, he gave us confidence to chime in and to always bravely speak our minds. 

Dan inspired.  He believed.  And he created community.  I hate that we have some last words from him, but those last words were*: 

Rebel Alliance, unite! 

Vaccine Concerns: It Isn’t Just About Autism

By Cathy Jameson

I can’t remember which news story it was that I was listening to, but the line “…vaccines don’t cause autism…” was said.  As if that wasn’t enough, the speaker made sure to add that the measles (MMR) vaccine most certainly does not cause autism either.  Rolling my eyes, I turned the radio station. 

Please, I thought to myself.  Do yourself a favor and get some new lines.  This “vaccines don’t cause autism” bit isn’t the sole reason young parents are questioning vaccines today.  Other reasons exist, too.

Parents are concerned about vaccine ingredients like aluminum, formaldehyde, and human diploid cells.  They are concerned about side effects like seizures, allergic reactions, and anaphylaxis.  Some are also not too keen on how their doctor downplays and even dismisses their apprehension.  Instead of addressing the valid concerns, doctors demand that parents follow the full vaccine schedule.  If they don’t, or if they ask to delay the shots?  They’re “fired”.  No longer welcomed in the practice, the parent is forced to leave and left to find answers on their own. 

Thankfully, with so many resources literally at their fingertips, someone who’s been dismissed by a doctor can educate themselves on vaccines elsewhere.  They can look through medical books at the library, they can read about those worrisome vaccine ingredients online, they can seek help from another more open-minded provider, and they can join parenting message boards as well.  The topics that come up the most on the message boards I’m on tend to be about children’s health and how to navigate vaccines.  Since I have been open about my child’s vaccine injury, young mamas seek me out when vaccines come up in online conversations on those boards. 

As a new parent, these young moms want to do the right thing.  They want the best for the child.  They want to know that they’ve made good choices.  That can be hard to do when they hear similar messages like the one I heard on the radio.  From their doctor, from the school nurse, and from mainstream news, it’s all from the same memo:

Silly parents, vaccines don’t cause autism.  They save lives!  Now go out and get them…all of them.  You’ll be fine.  Trust us. 

As a young mom myself, I trusted.  But not for the right reasons.  It was only after my son fell sick did I think to invest my own time in the vaccination process.  Sadly, I didn’t comprehend it fully until after I witnessed real-life events, like seizures, loss of gained skills and autism, all of which followed my son’s vaccinations.  It had already started to diminish, but by then, the trust that I had for my doctor, for that school nurse, and for the media was completely broken. 

Best of: Only In My Dreams

Ronan's been popping up in his siblings' dreams lately. He was in some of my recent dreams, too.  Each of us have seen Ronan playing, interacting appropriately, looking genuinely happy and also talking.  Since those dreams mirror our everyday hopes, I thought I'd share an older piece today.  It's about one of the first dreams I had about Ronan after he got sick.  In it, he spoke. He spoke clearly, and he spoke confidently.  It's been a long time since I've heard his voice, but someday, I hope that I can hear my son speak again.   Enjoy this "best of" post.

By Cathy Jameson

Does it count if my non-verbal son spoke in my dream?  Does it count if I asked him to repeat the sentence to make sure it wasn’t a fluke and he did?  I don’t know what it meant, but Ronan said to me, “I saw the white car going down the road at 15 miles per hour.”  He said it twice.  He said it to me while looking me straight in the eyes. He said it to me like any typical 4-year old would.  He said it.  Then, I woke up.

This is not the first dream I’ve had about Ronan using his words. I asked God one day if I could please just have a sign that we were doing the right thing by walking down the biomedical road with all the supplements, all the doctor visits and all the research it was going to take to heal Ronan’s body.  That night, I had a dream that Ronan spoke. I was holding him on my hip as I would hold any typical kid of mine.  That was the first sign that things were hopefully getting better—Ronan’s sensory issues would never allow for that kind of snuggle. 

Back to the dream, Ronan and I were walking down a beautiful dirt path near the Potomac River that I have only walked down once before in my life.  I looked at Ronan and said, “Ronan, can you say Mommy?”  He said Mommy.  I kept on walking, “Ronan, can you say Daddy?”  He said Daddy.  I know I had to try to trick him since these were words that any typical kid should say.  I then looked at Ronan while we were walking under the tree branches that met over the middle of the road with the sunlight filtering in and said, “Ronan, can you say chocolate chip cookie?”  Well, the sweet little boy said chocolate chip cookie just as plain as day.  I know we kept walking down the road a bit more and then I woke up. 

Ronan's been popping up in his siblings' dreams lately. He was in some of my recent dreams, too.  Each of us have seen Ronan playing, interacting appropriately, looking genuinely happy and also talking.  Since those dreams mirror our everyday hopes, I thought I'd share an older piece today.  It's about one of the first dreams I had about Ronan after he got sick.  In it, he spoke. He spoke clearly, and he spoke confidently.  It's been a long time since I've heard his voice, but someday, I hope that I can hear my son speak again.   Enjoy this "best of" post.

By Cathy Jameson

Does it count if my non-verbal son spoke in my dream?  Does it count if I asked him to repeat the sentence to make sure it wasn’t a fluke and he did?  I don’t know what it meant, but Ronan said to me, “I saw the white car going down the road at 15 miles per hour.”  He said it twice.  He said it to me while looking me straight in the eyes. He said it to me like any typical 4-year old would.  He said it.  Then, I woke up.

This is not the first dream I’ve had about Ronan using his words. I asked God one day if I could please just have a sign that we were doing the right thing by walking down the biomedical road with all the supplements, all the doctor visits and all the research it was going to take to heal Ronan’s body.  That night, I had a dream that Ronan spoke. I was holding him on my hip as I would hold any typical kid of mine.  That was the first sign that things were hopefully getting better—Ronan’s sensory issues would never allow for that kind of snuggle. 

Back to the dream, Ronan and I were walking down a beautiful dirt path near the Potomac River that I have only walked down once before in my life.  I looked at Ronan and said, “Ronan, can you say Mommy?”  He said Mommy.  I kept on walking, “Ronan, can you say Daddy?”  He said Daddy.  I know I had to try to trick him since these were words that any typical kid should say.  I then looked at Ronan while we were walking under the tree branches that met over the middle of the road with the sunlight filtering in and said, “Ronan, can you say chocolate chip cookie?”  Well, the sweet little boy said chocolate chip cookie just as plain as day.  I know we kept walking down the road a bit more and then I woke up. 

When Autism Crosses the Line

By Cathy Jameson

I shared this photo (above) and short story with family and friends while we were on our Christmas vacation:

At Ronan's happy place.

He was so happy, so very happy.

I was, too.

Until he crossed the foul line.

When Ronan's gutter ball didn't knock down any of the pins, he decided to go knock down the pins himself. I booked it down the lane after him. But dang, those bowling alley lanes are so slippery.

Down I went.

Ronan kept going as fast as his ataxic, neuropathic little legs could move him with my husband scrambling not too far behind.

Ronan made it to the pins before I could get up and before either one of us could reach him.  He knocked two pins over, and before Daddy reached him, down the sweeper bar came right next to his head. Oof.

But Ronan was happy. And sometimes, even though you've left your ego (and a few tears) on the slick floor, it's okay.

Ronan 2
Cat 0
Hearts still full ♥

--

When we arrived at the bowling alley earlier that day, I made a point that morning to not tell the manager about Ronan.  I don’t always do that.  Since he looks typical, I’ll sometimes give a manager a heads up:  This is Ronan.  He has autism.  If we need to cut things short, or if we need some extra assistance, we’ll let you know.  That day, I opted to not say anything about my son or about autism.  Confident that he’d love every minute of our fun day out, I was sure Ronan would do well.  He did great just two weeks prior at a bowling alley not too far from our home, so I expected a repeat that morning.  I was sorely disappointed. 

Tell Your (Autism) Story

By Cathy Jameson

I came across a headline last week that caught my eye.  From a magazine that I no longer subscribe to, but happened to get an email from in my spam folder, the headline said, “Tell Us Your Story—2017 Neuro Film Festival Now Accepting Submissions.” 

We know you have a story to tell … and we want to hear it!

 

Even with how many times I’ve told it over the years, telling our story isn’t an easy task.  It comes with admitting that I did things the wrong way.  It comes with reliving a painful past. 

Is [your story] about yourself, or a loved one?

My story is about a very much loved son, Ronan. In sharing his story, it requires sharing intimate details of a decisions that ended up hurting him.  Despite all that, I tell our story whenever I can. 

Do you want to help raise awareness of and funding for critical brain disease research?

As painful as it would be to share it again, I’d love nothing more than for the video judges from the contest’s sponsor, the American Association of Neurology, to know exactly what happened to my typically developing child and the neurological damage he has suffered.

With Autism, Grace Abounds

By Cathy Jameson

With Ronan’s needs and with my husband’s busy work schedule keeping him busy, it isn’t easy for us to go out of town.  Since we need a break from life’s demands every now and then though, we do make sure to get away when we can.  We managed to do that over the summer.  That trip, which couldn’t have been more perfectly timed, was a godsend.  Having the chance to go back home, to catch up with friends, and to be back by the ocean where we all thrive, filled our souls with hope. 

Since I didn’t know when we’d have time to repeat that sort of respite we so desperately needed, I held onto the memories from that last trip.  Sure, there were moments of stress while we were far from home – regressive non-verbal and sometimes aggressive autism is still regressive non-verbal and sometimes aggressive autism no matter where we are, but we experienced more moments of peace than moments of frustration. 

That peace brought hope.  That hope brought a sense of calm.  That calmness, manifested both physically and mentally, gave me strength.  As strong as I may seem to some people, I need encouragement to keep my chin up and to keep going forward. 

Even though vacation can be stressful – the planning, the traveling, the new surroundings, the unpredictable behaviors – the positives that come from being able to walk away from the daily grind far outweigh the potential negatives.  Remembering just how many positives we all experienced the last time we took a vacation, when I realized that we might be able to get away for Christmas, I welcomed the chance to do just that. 

Not only did we get the chance to tiptoe out of town, we ended up at the beach again.  It wasn’t the same beach that we went to last summer, but we breathed in that same ocean air.  We felt that same ocean breeze.  We enjoyed that same sound that the crashing waves make that I love to hear.  That was all the same, but something was different.  We were surrounded by family at this beach, family who want nothing more than for us to be able to stop, to rest, and to just be. 

To just be. 

That isn’t always a possibility with life with regressive autism, but with more hands on deck to help us keep Ronan happy, safe and cared for, we could just be, and we did get the respite we so desperately needed.  I know that other families will not be so fortunate.  This weekend, parents were left to manage their child’s aggression on their own.  They were left to handle the self-injurious behaviors on their own.  They were left to find respite through an agency instead of with a relative.  It’s got to hurt when family doesn’t pitch in.  Some family members may not recognize just how intense raising a child with autism really is, but for those who do and who refuse to lend a hand add to an already heavy burden.

Autism’s What If

By  Cathy Jameson

Each night before the kids’ bedtime, we gather in Ronan’s room to say family prayers.  We go around individually with our own prayer requests.  The kids have had the same general prayer request for years:  for Ronan to be able to communicate.  Over time, that simple request has evolved.  They now have more specific intentions:  for Ronan to get his words back, for him to use his words, for him to be able to verbally communicate, and for him to have a meaningful verbal conversation with us.  Since Ronan had speech at one point in his life, we remain hopeful that it will one day return. 

Bedtime should be quiet time but it actually turns into the best time for the kids to communicate with their non-verbal brother.  Before the whole family has pig-piled into Ronan’s room to start prayers, he gets some one-on-one time with a sibling.  Sometimes it’s Fiona who joins him.  Other times it’s Willem.  Lots of times it’s his silly little sisters.  No matter who has a few quiet minutes before we gather at the end the day, I always hear one of the sibs ask Ronan to say something. 

Hey, Rone.  Can you say shapes?  Try it.  S-h-a-p-e-s…

I’ll sing the song but you say the word that’s missing. Ready?  I’m bringing home a baby bumble---

I found one of your favorite pages!  Say it with me, “And our fish said ‘No, no’…make that Cat go away...tell that Cat in the Hat you do not want to play…”

When he hears his favorite words being said, sung and signed by the siblings, Ronan’s eyes light up.  His interactions improve.  His verbal output attempts increase.  Squeals are squealed, and hope is restored. 

Using words or phrases from his favorite books, movies, or songs, instead of winding down for the day, everyone gets a little jacked up.  Despite how exhausted I am and how much I’d like their day to end so I can catch up on whatever I need to do, I never stop their activity.  Ronan feeds on the kids’ positive energy and communicates more in the ten minutes prior to bedtime than he’s done all day. 

When they finally do slow down for the day, the other kids gush all over that brother of theirs.  That isn’t the only time they show him any attention or affection, but it’s the time of the day that they give him all of their attention all at once.  My typical kids are active.  They love to play, run around, play, swing, play, do arts and crafts, and play.  It’s rare to see them quietly sitting still.  Ronan, on the other hand, is a couch potato.  He’d rather play Wii.  He’d rather watch YouTube videos.  He’d rather play a game on his iPad.  Trying to interact with him while he’s engaged in his preferred activities doesn’t work out so well.  We do curb screen time to make sure Ronan gets regular play time opportunities, but his underdeveloped social skills prevent him from wanting to join in on the playtime my other kids crave.  I know it’s hard for the siblings when Ronan ignores their requests to join them, but they don’t stop asking him to play.  The other night at the end of prayer time, though, I could tell that one of the siblings was getting a little frustrated.  The frustration was not toward Ronan but with why it’s sometimes hard for him to do things that she, the younger sister, can do so easily. 

Waiting until the other kids had skipped off to bed, Izzy crawled under the covers with Ronan.  I’m going to snuggle here with you, Ronan,” she said as she cozied up next to her brother.  Laying quietly next to Ronan under his favorite blankie, I could tell that she had something on her mind. 

“Mommy?” Izzy started. 

“Yes, sweetie?” I replied.

“Mommy, what if Ronan hadn’t ever gotten the flu shot?” Izzy asked.

On This Day With Autism

By Cathy Jameson

I am really loving Facebook’s On This Day feature.  When I click on it, I get to see posts I’ve shared from previous years.  Since I’ve been on FB for almost ten years now, I have gotten to see tons of memories!  I clearly remember some of them – birthdays, major milestones, and favorite photos of the kids.  Every now and then, I see something that I don’t recall sharing.  Like this status and link that I posted three years ago last week:

Ronan's choice of songs tonight. ♥  Little dude's music is amazing.

I don’t know how he did it, but he found that song.  He played it on his iPad and left it where I could hear it.  I was floored. 

I Will Always – by The Cranberries

And now it's all the same to me

Autism, It Changed Everything

By Cathy Jameson

My son doesn’t have the kind of autism that’s featured as a ‘feel good’ story at the end of a nightly news segment.  He has is the regressive non-verbal kind.  Completely dependent, Ronan requires constant monitoring and specialized care.  That’s because the type of autism he has came with seizures and a host of medical issues.  Those medical issues have contributed to developmental and cognitive delays.  He’s in a good place now, but I don’t know if his health will bounce back to what it was before he got sick. 

Ronan’s healthier baby days are long gone, but the hope I have for this child of mine has not diminished.  With all of the setbacks he and I’ve had over the years, and there have been quite a few, you’d think that hope would be the last thing I hold onto.  Who holds onto that for as long as I have?  I’ve faced more traumatic moments in Ronan’s short 13 years of life than I ever expected to as a parent.  From 911 calls, to emergency room runs, to battling doctors, and to unfortunate moments of panic due to Ronan’s wandering, being the parent of a child with severe autism hasn’t been easy.  But with help from devoted family and friends, as well as with a lot of faith and a never-quit attitude, I keep going. 

Consciously putting one foot in front of the other – even though on some days it would be easier to give up, I walk this autism parenting path hoping and praying that I was doing the right thing for my son.  I haven’t always made the best decisions for Ronan in the past and am reminded of that every day.  But if I dwell on that too long, we both suffer.  So instead, I keep my chin up and focus on what I can do right now. 

I’ve done a lot for my child as have many other parents with children like him.  It sometimes may not feel like enough has been done to stop the autism epidemic, but together, we’ve moved mountains.  Late last week, I was reminded of something our community did four years ago.  Do you remember it?  It was kind of a big deal.  On the morning of November 29^th, we got Congress to talk about autism.  Not only that, they talked about autism and vaccines.  They even dared to link the two together.  They talked about that link all day long and aired their conversation for others to hear it, too.  

Vaccines: It’s Up to You

By Cathy Jameson

A few weeks ago, I shared part of an online conversation I had about vaccines.  Initially, I was hesitant to reply but after rereading a callous response made by a woman I’d never met, I needed say something.  Demanding that everyone should be vaccinated no matter what, I thought I might offer this person a bit caution in making such broad and ignorant demands. 

I challenged her.  In reply, she challenged me. 

Several hours one evening, we went back and forth with a mostly polite verbal vaccine volley.  She regurgitated typical propaganda while I went deeper sharing some actual vaccine experience.  I could’ve walked away at any point of the conversation.  I own nothing to this person, but with how condescending this gal was, I wasn’t ready to let her have the last word.  I’m glad I didn’t.  The next day, other parents who’d been reading the thread chimed in.  Some were as knowledgeable as I am about vaccine injury and offered their input.  As that weekend wrapped up so did the conversation.

Thinking the convo was completely over, I woke up a few days later to a notification showing that things had picked back up.  The lady who made the callous remark came back trying to give us vaccine hesitant parents a what for.  She was adamant in that there should be some sort of punishment, like a fine, for anyone who willingly declined vaccines. 

Oh, boy. 

I got ready for Round 2.

I had stuck to basic vaccine facts in the original replies, but decided to share more personal information that day.  I let her know that both my boys were vaccine injured.  That happened after both my boys received the recommended vaccines.  One on my boys received the full series while the other did not.  The one who got all the shots didn’t fare well at all.  As a result of his vaccines, he’s got seizures, a severe speech delay, and regressive autism.  I shared that what killed me most is that those shots did nothing for him.  None of them gave him any immunity for the diseases the vaccines would supposedly prevent.  I added that for her to come in again guns-a-blazing demanding that all people be fully vaccinated is absolutely ludicrous.  And downright rude. 

Vaccines: Got Yours?

By Cathy Jameson   

I was tagged in a Facebook post last week.  In the post was a link for an article about the Commonwealth of Virginia’s religious exemption.  The religious exemption, for now, is safe.  With how California managed to take parents’ rights away, I celebrated the victory.  A woman who saw the post did not. 

I’m not shocked.  Not everyone believes in vaccine choice.  This woman in particular very clearly did not.  Her first comment was not only ignorant but also showed how insensitive she was.  Without considering an individual’s medical history or respecting that a person’s religious belief can influences healthcare decisions, she said that the unvaccinated should be denied services from doctors, public health and from schools.  She added that to be unvaccinated goes against the greater good and that in order to be able to mingle and interact in public, people should be vaccinated.  To not be vaccinated is selfish. 

I didn’t know who this person was at all besides that she is a friend of my friend, so I debated whether or not to reply.  I could not let her grand and demanding statements be the last ones on the thread, so I chimed in.  I said, Well, thank God some of them don’t (deny services)!  Thank God for doctors, health officials, and schools who are open-minded and more understanding that for some people – children and adults – cannot be vaccinated for either health reasons, personal reasons, or religious reasons.  If you want to be vaccinated, go for it.  No one is stopping you.  But for those who have serious reservations about them or who have had serious reactions from vaccines (like my family members have), having the freedom to choose is a welcomed option.

Tis the Season to Say No to a Flu Shot

By Cathy Jameson

Twice in the last month I've been asked if I wanted the flu shot.  The first time I was asked, the nurse was a bit hesitant, "Now, I know you usually decline it, but I'm obligated to ask...do you want a flu shot this year?"  Just like last year, and every year since Ronan's health took a nose dive, I gave her the same reply, "Nope.  All set.  Thanks."  

This nurse, who happens to be one of our favorites, looked up from the computer and apologized for asking, "I'm so sorry to have to ask you that.  You know I respect your decision, but I can't get to the next screen without answering this prompt..."  I thanked her.  Other nurses have not been so kind, so I smiled and said, "I understand.  Ronan doesn’t need a flu shot today, thank you."

Years ago, I wouldn’t have been so calm.  Being asked if I wanted that shot used to make me really upset.  I’d still be polite in my reply, but deep down, I was boiling.    

Didn't they know that was one of the worst shots Ronan ever got?  

Didn't they remember how awful things got soon after for him?  

Can't they see that we're still dealing with the side effects from the last time he got that shot?  

Of course they could see!  Most of the time, though, their hands are tied.  The nurse or whoever’s checking Ronan into the system is following orders from their employer.  Thankfully, this nurse knows us well enough to not push us.  That’s why when the flu shot was brought up in that appointment, like I knew it would, I was able to let the question she must ask go in one ear and out the other. 

Unless I continue the conversation and offer why I’m saying ‘thanks but no thanks’, newer medical providers we sometimes need to see will never fully understand why we’ll never opt for that shot again.  So when I was asked the second time in recent weeks if we’d like a flu shot, I let the new nurse we’d just met know why I was saying no. 

Review of An Unfortunate Coincidence: A Mother’s Life Inside the Autism Controversy

By Cathy Jameson

 Soon after starting her book, I sent an email to Julie Obradovic:

I'm in tears and enraged and on the edge of my seat reading your book. It's taken a few sittings to get any reading done (things are insanely busy here), but wow.  I cannot stop reading.  

About a month earlier, Julie had asked me if I might be interested in writing a review of her soon-to-be released book, An Unfortunate Coincidence: A Mother’s Life Inside the Autism Controversy.  Thrilled to be asked, I couldn’t wait to read it and tell her what I thought of it. 

I remember the day that Julie told me she’d gotten a book deal – I’m sure Julie was very excited, but I was over the moon ecstatic!  Always an eloquent writer, I couldn’t wait to read more of what she had to share.  Now that it was time to finally read it, getting through Julie’s book in one sitting just wasn’t happening.  With all the demands being placed on me at home, I knew that I’d have to go elsewhere to concentrate.

Setting aside several hours one day, I headed to the library.  I found a quiet corner and continued to read.  Not intending to put the book down, I’d only gotten a few more pages read when I took a break.  I sent another email to Julie sharing how difficult it was for me to read her story:  

I want to stop.  This is truly painful for me to read because your story is so eerily similar, like almost exactly the same medical timeline of medical issues and the autism discovery - not to mention the same type of dismissive doctors and the anxiety and the feeling like you're in the Twilight Zone - it is so hard to read.  But I'm pushing some emotions aside and will continue, not just to get the review done, but also because I want to know more.  I know what you've written will help so many. 

No doubt that it will.  No doubt that it already has!  

When Autism Finds a Friend

By Cathy Jameson

Thanks to some generous souls who are helping us with Ronan this year, I have had the pleasure of volunteering time at my kids’ school.  I’ve also been able to volunteer some time afterschool with some activities my kids are in, too.  It’s taken a long time for that to happen, but I’m grateful for every minute I get to do this.   

Twice now, I’ve been able to help drive some of the soccer team to their away games.  For the first outing I drove my son, Willem, and 3 of his teammates.  Each of the boys knew of Ronan and had briefly met him before, but it would be the first time they’d be in the car with Ronan.  It would also be the first time they spent any length of time with him beyond sharing a quick hello. 

As the boys loaded their bags in the trunk, I took Willem aside and said quietly, “Why don’t you sit next to Ronan just in case he…”

Willem quickly said, “Don’t worry, Mom,” and added, “I was going to.”

One teammate, who also happens to also be one of Willem’s favorite friends as well as a classmate, overheard us and said, “Why can’t I sit next to Ronan?”  Before I could answer him, he got in the car and buckled up right next to Ronan’s seat.

“Well, he might…” I started, “…he might reach for your hand.  And sometimes it hurts when he does that.  And if I’m driving, I can’t help get his hand loose from yours…” I explained.

The classmate looked at me, looked at Ronan and then said, “It’ll be okay.”  Looking at Ronan again, he tried to engage him, “Hey, Ronan!  Remember me?” 

With a smile, Willem’s classmate looked back and me and said, “Okay.  I’m ready.” 

Somewhat nervous as we had an almost 30-minute ride to the field, when I saw the boy’s smile I let go of my anxiety.  His positivity was a good sign and exactly what I needed. 

Best of: No Greater Joy

Cathy has the day off. Enjoy this Best Of post from October, 2014.  We could use some joy!

By  Cathy Jameson

I met a young woman at a car dealership just about two years ago. I was there to get an oil change.  She and her family were car shopping.  Sitting in the child play area with two of my kids, the young woman parked her stroller opposite of where we were sitting and unbuckled her boys.  She got her toddler and baby settled with some toys while her husband remained with a sales clerk to discuss cars.

I stole a few glances at the woman.  She was pregnant.  Trying to calculate her boys' ages, I thought to myself, Wow, soon to be three kids under the age of three.  Just like I had. 

Thinking back to my early days of parenting, I remembered how busy I was.  How tiring it was.  And sometimes how old I felt.  This woman so young.  She too so busy.  But she didn’t have time to be tired.  She was keeping tabs on her boys and sat down with them when they sat to play.  She jumped up when one scooted off to a different corner of the room.  She also stayed one step ahead of her other son he wanted to explore what lay beyond the play area. 

The older boy reminded me of my brother when my brother was a baby—tan skin, curls, deliciously round cheeks.  And happy.  Her older son was so happy.  I found myself giggling as I watched him. 

The young woman and I made eye contact and said a polite hello.  She tried to apologize for how quickly her boys took over the play area.  I told her not to worry. I had five kids, also close in age.  Her sons were a delight and certainly not a bother.  I picked up a magazine but continued to steal glances of her children as I read.  I was drawn to them. 

The oil change was taking longer than usual. The automotive rep came over and apologized for how long things were taking.  He added that it would be a little bit longer.  I didn't mind.  In fact, I was glad to have a reason to stick around.  I felt an overwhelming urge to talk to the young mom.  I get that feeling every now and then, that I'm in the right place at the right time.  But it’s not for my benefit; it’s tends to be someone else's. 

Autism’s Grip on the Siblings

By Cathy Jameson

Once a week, I drive my oldest daughter’s morning carpool group to school.  For the last few weeks, though, the entire crew hasn’t been with us.  Several of the students have had before-school activities, so it’s been just Fiona and another young teen in the car every Tuesday morning.  I miss the teenage banter of the other kids and the camaraderie this particular group shares, but I’ve cherish the time I get with Fiona as she fills me in on what’s going on in her life.   

The last time I had just Fiona and the one other classmate in the car, I started our Tuesday-morning conversation asking my daughter about the usual topics.  That included getting updates on her classes, asking how her friends are doing, and getting the scoop on the latest volleyball skills she’s been working on. 

On these mornings, Fiona asks for updates, too.  Missing her siblings something fierce due to several late-night volleyball games, she fondly asks how each of the kids are doing. 

Worried about Ronan, who’s been having some odd eye issues (that we recently discovered were seizure related), I give Fiona updates on how Ronan was feeling and filled her in on some funny sibling stories I’d been saving to share with her.  Making her laugh, but also making her miss the kids even more, the last time I drove her to school, I reached for Fiona’s hand and held it.  Squeezing it before letting go, I said, “The kids miss you so much, too.  Things will slow down soon, honey.  Let’s just get through this busy week and do something fun with the family this weekend, okay?” 

She smiled and quietly nodded.  Thinking we’d go back to some lighter-hearted topics, Fiona wasn’t done asking questions.  I’m not sure how long she’s been wondering about it, but words cannot fully describe the shock that went through me as she asked the next question. 

“Mom, when I get married and have a baby, do you think if I have a boy he’d have autism like Ronan?”

Braving the Storm

By Cathy Jameson

Thunder, lightning, rain, flash flooding, and damaging winds.  We’ve had some wild weather lately.  For the last 3 days, storms came in the middle of the night.  Some stuck around for the morning.  Causing delays, cancellations and major headaches for a lot of people, I was glad to see them finally go. 

Thankfully, during the last few days that saw storm after storm after storm, we never lost power.  Friends elsewhere shared that they, too, recently experienced some wild weather.  They weren’t so lucky.  They lost power for 3 days.  Should we ever find ourselves in the same predicament we have a generator if the lights ever dimmed. 

Reading my friend’s updates, that included having to pull out their hurricane storm box, reminded me just how unpredictable life can be.  The updates also reminded me that we have not replenished contents in our own storm box for quite some time.  From what I remember, we only had the basics in it.  Food.  Diapers.  A flash light.  Batteries.  The last time I remember prepping the box, Ronan was much younger.  Surely the diapers I had set aside would be too small.  Food, even though non-perishable, would have expired.  Same with the batteries.  After last week’s weather, it was time for me to make time to go through our emergency supplies again. 

I don’t like Just In Case moments, but just in case we needed to dip into our emergency supplies, I needed to take time to make sure whatever was in the storm box would actually provide support.

What would I need if we lost power for 24 – 36 hours?

What if it extended 3 – 5 days?  Could would we survive?

Going 3 days without electricity.  We’ve experienced that before, and it is not easy.  It isn’t just losing luxuries like access to refrigerated foods or being able to cook for our family of 7.  It’s keeping the temperature in our house safe for Ronan.  Since he’s unable to regulate his temperature, we must make sure that the thermostat is set just so:  cool in the summer and warm in the winter.  If it’s too hot, he could have a seizure.  If it’s too cold, he could have a medical crisis.  Medical complications can add extra stress to an already stressful situation, so having a plan, to include having an alternate place for us to stay should we have to evacuate our home, is not a bad idea. 

Autism and Wandering: Constant Vigilance

By Cathy Jameson

An estimated 49% of those diagnosed with autism have wandered or eloped from home, from school, and while out in the community.  Those who wander tend to be drawn to water – pools, ponds, canals, lakes, rivers.  Wandering can, and has, resulted in injury and death.  Parents need support.  Educators need support.  First responders who are called to join search efforts when a child wanders need support, too. 

Locks. 

Alarms. 

Vigilance. 

Even though I possess each of those, Ronan has still managed to wander. 

While I walked into the kitchen to unload groceries the other day, my non-verbal son, Ronan, tried to walk out the door.  It was my fault the door was unlocked.  I hadn’t finished unloading the car, so I hadn’t secured the door just yet. 

Thinking Ronan had gone to the living room, I started to put some food away.  While my back was turned, Ronan made his way to the den where I’d left the door ajar.  The den door leads outside.  Ronan doesn’t like to play outside.  Content in the house, he is happy and safe indoors.  But not that day.  That day, while I began to put groceries away, he thought he’d go explore. 

Thankfully, we have all sorts of “bells and whistles” on every one of our doors that leads outside.  The bells on the door handle jingled when Ronan reached for it.  That noise tipped off his younger siblings, who blared for me loudly while trying to block their brother from going any further.

“MOM!  MOM!  RONAN’S TRYING TO GET OUTSIDE!” 

I swiftly intercepted Ronan before he could take a step into the big, big world and thanked my children for being so vigilant.  Redirecting Ronan, I lead him away from the door, locked it, and brought him to another room where he could play.  Shaking my head, I thanked his Guardian Angel and then muttered under my breath, Two seconds.  That’s all it took. I turned my head for two seconds…

Vaccination & Segregation

By Cathy Jameson

It isn’t often that I can’t come up with a topic to write about for a Sunday’s post, but this week, after days of brainstorming, nothing satisfied me.  Not wanting to waste any precious time, on Friday morning I cruised through Google news to see if anything there grabbed my attention.  Something did.  But it wasn’t the pro-vaccine article that grabbed my eye and got my wheels spinning.  It was someone’s comment that piqued my interest. 

Paraphrased, an obviously very pro-vaccine individual told another commenter, who happened to have a vaccine-injured child, that Parents like you who choose to not vaccinate should not be allowed to mingle with the public. 

As terrible as that comment sounded, I wasn’t shocked.  I kept reading. 

Other pro-vaccine commenters began to leave similar messages.  They were in agreement and clarified that The Unvaccinated should be barred from public schools, from stores, and from society in general.    

They continued: 

The Unvaccinated should be corralled into their own society. 

With the hopes that child protective services would soon pay a visit. 

And maybe the sheriff, too.