Saturday, February 11, 2017

More Baby Steps

File this under:  More Baby Steps to Toilet Training

Some may see this as an annoyance - teenaged kid drops clothing on the floor and leaves it there.
I see it as a win.

Years ago when my typical kids were toilet training, they'd peel off all their clothes as they felt the urge to use the bathroom.  Ronan is almost there.  He's been taking off his clothes after a big pee (in his diaper) indicating that he needs a diaper change.  That, plus bringing a ton of diapering supplies to us, tells me we are inching closer and closer to more toileting success.  

What's next?  

Well, besides getting the kid dressed again, I'm hoping and praying he wants to do his bathroom business in the bathroom.

xo, Cat

--

Do you have a toilet training success story?  Feel free to share it below!  


Saturday, February 4, 2017

Choosing to Smile

February 4th, This Blows:   

...While I try to be upbeat and hopeful, there are days I just can't keep smiling. Ronan looks so normal at first glance.  Strangers don't understand why he behaves the way he does when they first meet him.  It's painful in those moments to either try to explain things to them or to choose to move faster and farther away from them.

I struggle to envision Ronan as typically-abled on my own bad days.  Some times I just want to blow off my responsibilities as a Mom but I know that I could never do that.  I have five kids and they all need me in some special way.  Ronan is my most needy most days as he has many medical issues that include mito disease, autism and cognitive delays.  My life includes weeks that are tornado-like and should have high alert statuses to warn others what to expect...


That old blog post crossed my path today.  I have a few other posts on the AO page, but I'd forgotten about that one.  It's written in typical me fashion - always try, always try to be hopeful, always celebrate the small victories, and never stop believing.  

From the beginning, I haven't stopped believing.  I may stumble every now and then and get down in the dumps, but that's not terribly unusual.  Lots of people stumble in life.  I push through, like others do, and try to put a smile back on my face like I did this week.  

This week was THE PITS.  My kids were sick.  My well-thought out plans were completely destroyed.  Then Ronan had dozens of seizures on Thursday.  The night those came on was the worst.  Walking around with more worry than with happiness, I asked myself how do I keep smiling when there's nothing to smile about?  

Then I saw that post.  Written during what looks like was a mirror-image awful week seven years ago, it was full of similar struggles, similar emotions, and also similar fall-down-but-don't-stay-down advice:  You'll pick yourself back up again, Cat.  Hang in there, you'll see.   

...while most of Ronan's days are full of struggle just to do the simple things - like getting in his chair without falling over, or scooping his food without it spilling out of the spoon - Ronan is victorious in some manner.  Each day he faces more challenges than I will ever know.  Each day he teaches me and gives me a chance to learn more and do better than yesterday.  He is helping me to overcome the pain of what if things had been different, why did this happen to you and why did it happen to me too.  I may just want to blow things off but that little hero wrapped up in a seven year old's body keeps pushing me along.  I can't wait to find out what we'll learn together tomorrow.

As usual, things settled down this week as they did the week I wrote that old blog post, too.  

Making sure all was well before tiptoeing back out in the world again, I left Ronan resting at home with his therapist on Friday morning.  Walking out of the house and away from the chaos the week had left behind - piles of laundry, empty cupboards, mail yet to be read and medical bills stacking up - I pulled out my To Do list.  Overwhelmed, I saw that I had much to do.  

My first task was to get groceries.  Needing to stock up on bulk items, I headed to Costco.  In my own little world, I went up and down the long aisles getting the things we needed.  My cart was full.  With still so much to get to on my To Do list but with little time to get everything done, I headed toward the exit.  I hadn't realized I was smiling as I got closer to the doorway, but my smile caught the eye of the older, happy fellow who'd be charged to check customer's receipts.  

Smiling himself, he said, "I can tell you're going to have a really good day.  Your smile tells me that you are."

Taken aback, because I was concentrating on which errand I could tackle next - deposit a check, pick up medical records, or get to another store, I blushed.  

Thanking him and said, "You have yourself a good day, too." 

Even though this week blew and even though it was one of the most tiring, awful, trying and annoying weeks ever, with his encouragement, I promised myself that I would keep on smiling for the rest of the day.  

I always have the choice to find hope, to find happiness, and to draw on the positives.  On any given day, I face negative attitudes, situations, and outcomes.  They swirl about, but it's the positive moments and experiences that inspire me to go forward.  Sometimes in the midst of a tough day or a tough week, like the one I just had, I have to search out those positive moments.  Other times, they come in the form of a simple smile from a Costco employee. 

That employee had no idea the week I'd had.  He had no idea how dejected I'd felt the night before while I watched my son have one seizure one right after the other.  But that fellow chose to see that there was a glimmer of happiness to be found.  When he pointed that out to me, I smiled with purpose.  
Making a conscious effort to smile, to hope, and to find the positive is much better than holding onto pain.  Pain is a tricky thing, especially when one hasn't yet learned how to completely let it go.  Pain can be temporary, though, and for me in that moment, it all but disappeared.  

I know that pain has no place in a happy heart, so I thank God that I crossed paths with that Costco exactly when I did.  I hope I get to see him again on my next shopping trip.  His smile was warm, inviting and genuine and exactly what this tired but hopeful mama needed.  

xo, Cat







Thursday, February 2, 2017

From Home

Always with the kids in mind, no matter if they're in diapers or about to go out into the world as an adult...

I get invited to do some pretty amazing things.  Some stuff is miles and miles away.  Some is close by, but with how unpredictable life can be, getting to the close by events can be impossible.  
I have the chance to do some pretty neat things with some incredible people in just a few weeks, but I have so much to line up before I even think of going: making sure Ronan's people can come early and stay late, making sure no one is sick (oy, this week's plans were absolutely, utterly and completely destroyed with 3 kids home 3 days in a row), making sure my husband can be home in case my schedule runs late, making sure I have a back up plan to my back up plan, making sure everything falls into place. 
It can be so overwhelming.
I was telling my husband last night that as much as I want to be right there in the middle of all the awesome advocating that goes on, sometimes I can do more work right here at home.  Take last week, for instance.  It included several good examples of how easy speaking up can be.  
From right here at home, I was able to send out dozens of emails to representatives.  I was also able to make several phone calls to their offices while working out of my home office.  While sitting on my couch, I rallied with other concerned citizens who were also not afraid to speak their minds.  With all of us working behind the scenes and from the comfort of our own homes, together, we successfully shot down another bill that would've stripped parental rights.
And today?  While sitting here in my pajamas?  While sipping my coffee?  While I wanted to be out in the real world but found myself home again as my kids took another sick day?  
Well, today, I got a beautifully written email from a concerned parent asking me for advice.  I've gotten plenty of those messages and requests over the years, but it's been quite awhile since I've gotten one about an adult child.
The adult child is being forced to make a decision - get vaccinated with a vaccine they don't want and that's made with aborted fetal cells, or forgo an academic opportunity.  I don't have all the answers, far from it, but I do have a way of helping someone mom-to-mom.  So, that's what I did.  
Again.  
Right here from home.  
While still in my jammies.  
While sipping my coffee.
Finding me after reading my Where's the Outrage? Vaccines and Aborted Fetal Tissue piece, which recently made the rounds on FB again, I cannot tell you how humbling it is to get a message like the one I saw in my inbox this morning.  After carefully crafting my response, because my goal is not to tell a parent what to do but to share that they have options, here is some of my reply to the parent who also happens to be Catholic and who also shares the same opinions as I.
--
Hi,
Thanks so much for reaching out and telling me your story.  My kids are still young -- college and workplace medical requirements are years away for us.  I haven't done as much reading on the subject yet, but I know I need to start researching that myself soon.
Since I have limited knowledge on what you are facing, I hope the following ideas I brainstormed can give you some workable options...
...it can be so frustrating, so I'll be praying things work out.  If I come across any more information that I think could help protect your son's rights, I will send it to you.
Cathy
--
That other parent may have felt like her child was backed up against the wall, but there are other options to vaccines and school "requirements".  I let her know that by planting a seed.  A small one.  With a link or two.  With some suggestions that may work.  With hope and also with some happiness sprinkled in.
Moms don't have to go it alone, even those moms whose babies are entering adulthood.  We can do this.  Together.  Always for the kids...no matter how young or how old they may be. 

xo, Cat




Thursday, January 12, 2017

499.


499.

It's hard to sum up a lifetime of pain and suffering that's resulted from a supposedly safe, effective and life-saving product, but it is done.  Ronan's story was summed up in 499 words.  I pray I did it justice.  

Vaxxed is calling for our story, too.  An explanation can be found in this video.  The form to add your story, which is being sent to PEOTUS, can be found here.  


Start it simply:

Dear President-Elect Trump...


Then, add the facts.  

Add the before and the after.  

Add the pain and the suffering.  

Add the hopes and the dreams.  

Add the reality that happened instead.  

Tell the President Elect that this didn't have to be.  It really, really didn't.  

If you have a vaccine story, don't delay.  Write it.  Send it.  And believe that it will be heard.  


xo, Cat

  


Thursday, January 5, 2017

Cheers to the Pee Pee

I had hoped it would be an easy morning.

It would not be an easy morning.

Ronan's been able to sleep in for 3 weeks thanks to the kids' long Christmas vacation and thanks to having house guests keep on eye on the kids when I've had to jet out early. Today would be the first day that I'd have to get Ronan up with us.

I had to wake up Ronan early.
He hates being woken up early.
I hate waking him up early.
For a kid who has as many medical complications as he has, sleep is the best medicine for Ronan. When he sleeps, he's free from sensory issues. He gets a break from the physical pain that comes with some of his other issues. He's looks absolutely peaceful when he sleeps. And gorgeous. Gosh, that kid is so handsome. Anyway, he hates being woken up early. Hates. It. But on mornings like today, when I must get his siblings to school on time, we've all got to be up and out the door before 8am.
I try to ease the wake up process, but there's no easy way to do it. Especially when Ronan's in a deep, deep sleep. Especially when he decides to sleep on the floor. Especially when he's peed out of his diaper and all over the floor. His soaking wet comforter covered the pee spot, but as I knelt down next to Ronan to gently wake him up, my knee found that wet pee spot. Not right away, but as I slowly woke Ronan up, my knee slowly started to feel the cold wetness. Hoping to just scoop Ronan up in my arms and carry him to the car like I'd been doing before Christmas vacation started, I now had to strip Ronan, clean him up, and find a fresh outfit for him. I hadn't factored in changing him completely, nor myself. Tick tock. We were now going to be late.
Normally, I'd be frustrated with the delay I faced, but I once again thank God for pee.
Remember a few weeks ago when I did a happy dance about pee? That was when Ronan showed us that he sensed needing to use the bathroom. Well, today I celebrate the pee one more time. Ronan's been holding urine in and not having what we call his first morning pee until well into the afternoon. The other day, he didn't need a diaper change until almost 5pm. And holy pee pee! When he finally went, buckets and buckets came out of him.
Holding it in was becoming the norm a few too many days in a row. With him being non-verbal and unable to communicate why he's doing that, we started to get a little worried. Does he just not need to go? Does he just not want to go? Does he have a UTI? I'll speak to our provider today just in case this is a sign of a new, worrisome issue, but today, I'm getting back down on my knees - both of them, to pray a thankful prayer full of glee that the pee pee came when it did.
We've a lot to worry about with Ronan - seizures, growth delays, regressive autism, and the inability to speak. But if I don't have to worry about pee and can celebrate it instead, I'm going to do just that. Cheers to the pee pee. Hip, hip, hooray!
xo, Cat


Saturday, December 10, 2016

Devestating

Photo credit: NAA 
I saw this imaged shared earlier this morning.  This was the text that accompanied it: 

Kevin and Avonte's Law did not pass this time, but it will next time.  Because, you see, we are #autism parents.  
We never give up 

Thank you, Senator Chuck Grassley, Senator Chuck Schumer, Congressman Chris Smith, Congressman Bob Goodlatte, and all of the Senators, Representatives and staffers who worked so hard for our community on this bill.  And thank you to all of you for your calls, tweets, emails and support.  We'll get it done next year.  
#KevinandAvontesLaw


--

Should it have passed, Kevin and Avonte's Law would've helped families and would've worked to keep children with autism and other developmental delays safe.  With the rate of autism wandering at 49%, how absolutely unfortunate that it did not pass.  Before I went to bed last night, I thought for sure it would've.  I was heartbroken when I woke up and read the news.  The kids were heartbroken, too.  But we promised to not give up.  

How could we?  

Ronan needs us to keep working to keep him safe.  Kids like Ronan need us to stay strong for them as well.  Today, we are sad.  But we promise that we would find strength again.  

Next year  <3

But waiting for next year's legislative season might be too late for some kids.  Wandering is a scary reality for many families, ours included.  Should other families find that they need wandering information or support now, I'd encourage you to check out the following links:  

National Autism Association's AWAARE website 

Autism Safety Coalition's website

Big Red Safety Box Toolkit

Personal stories of how wandering has affected our family and what we've done to reduce wandering incidents: 

The Wanderer
Person of Interest
Wandering Through a Winter Wonderland
Wandering Woes

Thankfully, Ronan hasn't attempted to wander for quite some time now.  But because he has slipped out quietly in the past, we must be aware of where he is at all times.  As you can imagine, being that hyper-vigilant can be a little stressful.  But his safety is always a top priority.  I wish that was the case for everyone, including for those who could've voted to pass a bill that would've helped so many.  

We can't wait for lawmakers to set up safeguards to protect our children, but we can help each other right now.  If you have found successful strategies that has kept your child safe from wandering, please share them in the comments below.  Your ideas, experience and suggestions very well could help another parent keep their child from wandering today.  

xo, Cat

Tuesday, December 6, 2016

Tell It

I shared a memory in my AofA post this past Sunday.  It was about a hearing that happened four years ago.  That day, and all of the surprises that came with it, made for an exhilarating day.  Our representatives were listening!  They were really, really listening to us.  Not only that, they wanted to know more.  In the days that followed, families began to send in their testimonies.  I'd shared Ronan's story so many times before , but to sit down and draft a testimony was daunting.  If it was to become part of the record, I needed it to be perfect.  

I could do it, but something was keeping me from writing. 

Emotions.  

Lots and lots of emotions.  

I'd have to push through every single of one them as I rehashed the everything that happened to my child.  Could I do it?  I knew I could.  But I procrastinated.  Big-time.  How does one consolidate a vaccine injury and all the disasters that came with that injury in a two-page testimony?  Praying to God that I could do it justice, I put pen to paper...   




5 December 

To the Committee on Oversight and Government Reform in response to the Congressional Hearing on Autism November, 29, 2012, Washington, D.C.

I would like to thank you for this opportunity to submit this testimony for the record.  I was present at last week’s Hearing and appreciate being able to share my son’s story.  Just like many of the testimonies you are probably receiving, my son’s story starts typically:  he was normal, happy and every parent’s dream.  Life is very different and also very difficult for him now.  

Ronan, who will be ten in three weeks, was born right before Christmas.  Ronan had great APGAR scores at birth (8 and 9). As he grew, he was cheerful, bright, met his milestones and was interactive with family and friends.  Everyone said how happy he was and how his chocolate, brown eyes were so full of life.  I had little knowledge of vaccines at the time of Ronan’s ‘well baby’ visits and followed our pediatrician’s protocol of vaccinating Ronan at each of those appointments. 

Ronan’s vaccine record starts on his second day of life, receiving a vaccine intended to give immunity for a sexually-transmitted disease, one he’d be years (if ever) of potentially encountering.  Including two flu shots, both given before he turned two-years old, Ronan had two dozen before his second birthday.  Several of those vaccines never did what they were intended to do—that is to give Ronan immunity.  We know this because we tested for those specific antibodies that should have been created from those immunizations.  Ronan’s body never created immunity which means the vaccines did absolutely nothing for him.  Ronan’s body instead reacted negatively to the vaccination assaults, assaults which plague him to this day: severe constipation and malabsorption issues, encephalopathy, seizures, sensory processing disorder (sensitive to touch, to light and to sounds) as well as a steady decline that landed him in the emergency room and admitted to the hospital several times.  Ronan lost the few words he had just started to say as well.  As Ronan grew silent, his bright and shiny eyes grew dim and he was no longer able to make eye contact. 

My child began to withdraw socially, was becoming neurologically impaired and was constantly sick.  Unfortunately, because I still hadn’t put two and two together about why Ronan was so sick, and because our doctor continued to vaccinate Ronan, even when our appointment was for a sick visit, the assaults to Ronan were astronomical.  

Ronan was not one of those kids who had an immediate reaction (like what are listed in the vaccine injury table).  He slowly tumbled into his regression until his body could take no more; he landed face first onto the spectrum and remains there today.  To add insult to the vaccine injury, Ronan is one of those kids who suffers severe medical issues compounded by his vaccines.  

It took some time for me to finally connect the dots to Ronan’s vaccine injury as I was still a believer in “the system” while readily accepting what our pediatrician said as gospel truth.  Once I knew what was happening with Ronan, and long after the vaccines triggered an underlying mitochondrial disease which added another great burden to Ronan’s body, it was too late.  So much damage was done.  It wasn’t too late to take some legal action though. 

Ronan’s vaccine-injury case is presently in the Vaccine Court (which is part of the National Vaccine Injury Compensation Program).  Originally in the Autism Omnibus, ours is one of only a handful that has survived in Vaccine Court.  Just this week, after almost a year of searching, we secured a medical expert who has agreed to review Ronan’s medical files.  So many doctors refuse to offer families like mine help because of how negatively they are treated by the Court.  It’s shameful that “our” side is so disrespected.  As with many cases in Vaccine Court, the special masters are doing everything they can to dismiss or stall cases, including ours.  

Should we win, and we pray we do, Ronan’s case could be life-changing, not only for us to validate what so many parents know (that vaccines don’t just result in autism, they cause it), but to have the means financially to care for Ronan for the rest of his life as his severe medical, behavioral and overall health issues remain costly.  Even though there is no dollar amount that could help me change the past, having the means financially to care for my still very sick little boy would be incredibly helpful.  Special education schooling, special dietary intervention, seizure medication, behavioral, speech and occupational therapy, doctor’s appointments and respite care adds up. 

We spend thousands of dollars a year make sure Ronan is healthy and safe (he is an eloper, running away with disregard to safety; Ronan wears a Project Lifesaver bracelet, which includes yet another monthly fee).  Our family sacrifices what other typical families take for granted.  Outside support for caring with an individual with autism is inadequate--state programs are underfunded and understaffed. Much of the responsibility of care for Ronan’s needs falls on me and my husband when he is home, and the few extended family members who are willing to help when they can visit.

My husband works two jobs to provide for our family and to be able to afford Ronan's extensive and on-going therapy.  I cannot work outside the home because of the great responsibility it is to manage Ronan’s needs.  I have though, gotten the opportunity to write and share Ronan’s story in several outlets.  Sadly, his story is now one of many that I know and have heard for too long.  Just like every other parent I run across, I came to the realization on my own that Ronan’s vaccines did more harm than good.  But, by the time I found out, it too late.  I was told that vaccines were ‘safe’, ‘effective’ and ‘life-saving’.  You cannot use those descriptors because aluminum, mercury, aborted fetal cells and many of the other toxic ingredients in today’s vaccines should never be injected into humans but are.  

If I may be so bold to state that the autism epidemic never had to be, and that it could have easily been avoided.  Parents were sounding the alarms that vaccines were hurting their children long before my son was born.  Those parents were ignored and their message muzzled.  Had their message been heard, I would wager a very large bet that the Congressional Hearings on autism would never have had to exist.  Sadly, it does.  So, until every child and child’s family has the chance to tell their story, and until the US government finally puts the brakes on our country’s over-inflated vaccine schedule, I must ask that this investigation on why the rise in autism please remain open.  Ronan’s preventable vaccine injury was never part of the dream I had as a new parent.  Nor was watching an entire generation of children fall ill like he has because of over vaccinating.  But, that is what happened.  Now, with the evidence you have gathered in every single testimony you’ve received, there is more than enough proof to finally do something to prevent the autism epidemic from increasing any more than it has.    

Respectfully,

Cathy Jameson, mom to Ronan, autism advocate, writer, author

I'd taken my time to write that letter*, and it was perfect.  Unfortunately, though, because I took so long to write it, I now only had a few hours left to make sure it got to the committee before the deadline.  Too late to mail the letter in, I went searching for a fax machine.  I'd had bad luck using one in town previously, so I went to a local mom and pop pack-n-ship mail store.  I shared that encounter with some friends who had also taken time to send in their stories:
  
So, I hate Staples and go find another place to fax a copy of my testimony to Congressman Issa this morning. It won't go through on the first, second, third attempt at a tiny postal type of place. The owner says the lines are busy but that I can leave the papers and he'll try again later. I explained it is going to a Congressman and has to be done by 5pm. He assures me he will keep trying.
I leave it saying thanks and promise to be back after 1pm to pick up the receipt and pay. As I leave I think, I wonder if he will read it. I hope so.
I just went back to see if the fax was able to be sent and to pay the $3 fee. Walking in the store, the gentleman recognizes me and immediately says, "It's on the house; it went through no problem."
"What? Free?"
"Gratis. No charge. And, God bless you."
I have no doubt that this man read Ronan's story and was moved by the facts, the emotions and the brutal honesty that I shared in that testimony. His simple act of kindness of covering the cost of my fax was a generous gesture and what I feel is him recognizing that what parents face with this autism epidemic is real.
I held back tears as I left wishing him well and promising myself we will happily support his store from now on.

Sending in my child's story and sharing how it affected our family wasn't easy.  It was a painful reminder of just how difficult life has been for us, but it was important to speak up.  I still choose to speak up.  In fact, just yesterday I took time to let my representatives know my thoughts once more. From the comfort of my home, because now that I now have a fax machine of my own, I sent off a few faxes to a few offices in Washington, D.C.  I don't expect to hear back from anyone, but that won't stop me from saying what needs to be said in the future.  

Some pretty big things have happened since that hearing four years ago, but I think it's safe to say that parents are still waiting for more.  I know that I am.  And since my voice still works, unlike my son's, I'll keep reminding people that this is isn't over.  I'll continue to draft testimonies.  I'll continue to email Congressmen.  I'll take time to fax Senators, too.  And I'll tell our story to those who want to hear it. That story is hard to tell, but since I'm still able to share it, I will do just that.   

xo, Cat



* letter edited for this blog