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


Sunday, December 4, 2016

A Coconut Oil DIY Disaster

My sister gave me a good tip a few weeks ago.  She suggested that I up my oil intake.  I've used oils before while cooking, but usually only when a recipe called for it.  After hearing her share some of the benefits she's felt since adding them to her diet, she said I might want to try to use them more often - and not just for me but for Ronan, too.  

I could use it as a dressing on a salad.  

I could drizzle it over grilled chicken.  

I could even take a swig of it in a shot glass if I so desired.  

It might be a little tricky to add them to Ronan's food so that he doesn't detect them, but there are tried and true ways to get children, including picky eaters, to reap the benefits of healthy oils.  I know that they can be very beneficial, so I told my sister that I'd be sure to read up on them.    

Get in mah belly!
A dab of coconut oil, a dash of turmeric, a scoop of rice.  Yum! 
I'd already started using coconut oil more frequently and was quite familiar with its many benefits. While recalling one way I'd used it in the past, midway through a mostly serious conversation about diet with my sister, I burst out laughing.  Since she is always so very patient with me, she waited for me to be done laughing.  

"Oh, sorry.  I just remembered a funny story about coconut oil.  I think I told you about it before.  I kinda went a little overboard with it.  You could smell me for miles."

She did remember.  I was a walking, talking, stinking DIY coconut oil disaster.

Oof.  

--

A few years ago, we had a lice scare.  A friend, who'd just spent some time with us, called us mid-delousing her children's hair and said, "You might want to check your kids' heads.  We have lice." 

Ugh.  

Those three words = a parents' worst nightmare  

I immediately got to work checking all five of my kids' hair.  Thankfully, I saw nothing unusual.  But never having experienced that kind of scare with my own children before, I wasn't entirely sure if we were in the clear.  I wanted to make doubly sure all was fine, so I took a quick peek online to see what other moms did to keep the creepy critters away.  Tons of suggestions popped up - one of them was to use coconut oil.  I already had that in the house, but I knew I needed something more.  

After reading a handful of blogs, I took some notes.  In the notes, I jotted down the name of a few products that parents said worked for them.  Then I raced out to get some shampoo, a thin comb, a bottle of tea tree oil, and a package of disposable plastic shower caps.  When I returned home, I lined the kids up and got back to work checking their hair.  

Under a brighter light and with a magnifying glass, I combed through three of the kids' hair before taking a break.  Because of how thorough I needed to be, it was taking lots longer for me to inspect their heads.  Estimating it would be another hour before I could carefully check my own head, I scooped out a generous scoop of coconut oil and slathered it on my scalp.  As the oil melted, I gave my scalp a quick massage then quickly put a shower cap on my head.  I wrapped a clean towel around my head, looked at myself in the mirror and smiled.  

Perfect!  

I'd smother the wee lousy bastards, if I had any, while going from hair strand to hair strand with kid 4 and kid 5.  When all was said and done I'd get a nice shiny sheen from the conditioning that I'd read that the coconut oil was known to provide.  

Win win!  

An hour or so later, after I'd examined the last two of my kids' hair, I unwrapped my towel.  The kids' heads were clean - no lice!   It was finally time to check mine.  

I took off the shower cap.  

I ohhhed.  

I ahhhed.  

I smiled once more at my reflection.  

Then I got hit with it.  A smell.  A rancid, unbearably awful smell.  What was it?  OH. MY. GOSH.  I thought it might have been the towel, but it wasn't the towel.  It was me!  Something had gone terribly wrong.  My hair had a nice shiny sheen alright.  But my little experiment totally and completely backfired.  

Mistake #1 - Smothering my head.

Mistake # 2 - Keeping my hair wrapped up for as long as I did.

Mistake # 3 - Thinking I could leave my house and mingle with the general population smelling as odoriferous as I smelled. 

Holy moley, I stank!  Bad.  Like gag me with a spoon, the smell was overwhelming and absolutely disgusting.  If that wasn't bad enough, things were about to get worse.  As much as I tried, I couldn't rinse the oil out.  My hair was so slick.  Hours later, I tried again.  But the oil had started to harden.  My hair still had a gorgeous shiny sheen and my curls curled up quite nicely, but it felt like and looked like I had a head full of chow mein noodles.   

Crunchy, crispy chow mein noodles. 

That smelled like they'd been simmering in a dirty wok. 

For weeks.  

To say that it smelled offensive is an understatement.  It smelled downright awful!  I thought that maybe I could live with it, but could others?  I'd soon find out.   

Day turned to night, and I was unable to do a blessed thing to get any of that oil or the stink out of my hair.  I tried to shampoo it.  No luck.  I tried to condition it.  That made it worse.  I panicked.  That night wasn't just any old night.  It happened to be a night I'd been planning for weeks.  I was taking my husband out. But it wasn't just a night out for us...  

It was dinner out.  

With a bunch of friends.  

To surprise my husband.  

For his birthday.   

You know that expression "You can dress her up, but you can't take her anywhere"?  Well, that was me that night.  The part where it says "...you can't take her anywhere..." should've said, "...DON'T take Cat anywhere...especially when she stinks to high Heaven!"  

Unable to back out of our plans, I started to get ready.  But even all dressed up, the dirty wok smell that emanated from my head lingered.  

When we got to the restaurant, I sat at the end of the table praying feverishly that the night would end.  Please end.  Please end.  Please end.  Dear Lord, please make this night end!  They must've all held their noses because God bless them, no one in our party said anything about my crunchy, my shiny, and my oh-so-stinky hair.  

It took days for the oil to work its way off of my scalp.  It took weeks for it to get out of my hair.  It took months for the pungent smell to finally go away.  But bonus!  I do believe that oil kicked up some sort of detox.  The detox came with a pesky side effect - stinky armpits (holy cow, they reeked!), but the benefits?  There were plenty.  

Psst, Cat, you call stinky armpits a bonus?  

I do.  

Hear me out.  

At the end of those painfully offensive stinky months, my shiny hair stayed shiny.  My skin cleared up.  And my energy came back.  Before that coconut oil disaster, I'd started to get really sluggish.  When I wasn't running here, there and everywhere for my kids, I was napping.  Every chance I got, I napped.  With five kids underfoot, one of whom has severe special needs, I can't just nod off.  I needed energy!  And a good boost in energy is what I got.  So, yes.  Bonus to the detox and to the temporary stinky pits that came with it.

Breakfast!
Coconut oil goes in the coffee now, not on my head. 
--

To make sure that I don't over do it with oils again, at the end of the conversation I had with my sister, I promised her that I'd be sure to up my intake of healthy oils.  I also promised her that I'd never let any of them touch my scalp or my hair ever again.  Some oils come with amazing benefits.  Others, not so much.  Coconut oil and my hair don't mix well.  I learned that lesson.  Hard.  The first time.  Recalling that horrific use of coconut oil makes me shudder.  It was awful, really awful.  It was humiliating, so humiliating.  But now that it's over, it's amusing.  It makes me laugh out loud when I think about it.  And just like good energy, I could use a good laugh every now and then even if I've inadvertently made a laughingstock of myself.  

xo, Cat


--

Need another laugh?  Here's a different oil story that still makes me giggle.  Enjoy!  







Thursday, December 1, 2016

Peace-Filled



And just like that, it's December.   The kids are super excited.  I can't blame them.  With the flip of the calendar page this morning, they knew that Baby Jesus' birthday was even closer.  Actually, it's right around the corner!  They were all sorts of chatty about that last night.  

Inspired by the kids' chatter about Keeping Christ in Christmas, and dazzled by that sunshiny sun that I just love, I captured that photo (above) this morning.  I was supposed to be doing some important things - like catching up with bills, replying to emails, and returning a phone call, but I took a pretty picture instead.  

I like the verse that I used - originally, I was looking for a Bible verse but I found one from a Christmas carol instead.  While taking time I didn't think I had to put the photo altogether, I reflected on the Advent season and on the upcoming Christmas season.  I also prayed.  It's always nice to stop, to reflect and to pray.  Today, I got to do all of that.  

What a treat to have some quiet time before today's schedule was kicked into high gear!  I've been on the go, go, go ever since.  I will have an even busier afternoon that starts the second after I post this blog entry.  That's okay.  I found some peace this morning.  It's carried me through the last few hours.  I know that it will carry me through the next.  

For those who need a moment to stop, to reflect and to pray, I hope you find it.  Those moments can be few and far between, but they are so refreshing.  Praying that we may all be blessed with moments of peace, hope, and joy.  

xo, Cat