Monday, March 28, 2016

Sign It Right

And now for some good news.  

Ronan signed cat correctly today.  For years, and I mean y-e-a-r-s, he’s signed cat with only one hand and on the top of his head.  Cat is signed with two hands and on the cheeks. 
Ronan's little brother signs cat.
With his poor motor planning and delayed fine motor skills, several of the signs Ronan uses daily, like cat as it is one of his favorite words, fall under the RSL model (Ronan Sign Language) rather than American Sign Language model (ASL).  As long as you know Ronan, you know his signs.  If you don’t know him and he signs something to you, you might be left scratching your head….which is what the RSL version of the cat sign usually looks like.

It’s heartbreaking to see Ronan trying desperately to communicate a word, a phrase, and even a sentence with signs that only he understands.  Those closest to Ronan know what he’s saying with his signs, but we always encourage the ASL form.  While saying the word he is signing and while signing back to him the exact ASL sign, we hope that our modeling will remind him of the correct form.  I’m so glad that today, after years and years and years, of doing his own version of cat, that he remembered the correct version.  Maybe he’ll begin to correct his other RSL signs as well.  

Since the siblings are home this week on their Easter break, I'm going to ask them to work with me to model the signs Ronan has struggled to form correctly.  They don't get to sign with Ronan as much as before, but they know how important it is to practice signing.  If they don't use it, they do lose it.  I wrote about how those super siblings have helped encourage Ronan to communicate in the past and can't wait to show them my first “in print” article again.  
Look at how little they were!Issue 34 - 2010
I was thrilled to share our family’s experience and the photos of the kids in the hopes that it could help other families when I wrote that article.  Now, when people ask me for help with sign language, especially when it's another family with a child with non-verbal autism, I share a list of books, files, and websites.  My sign language “bible” has always been The Joy of Signing.  I have had this book since 1994.  That’s when I took my first formal signing class.  I’d just graduated college and landed my first teaching job.  I took the class for fun with a friend but also thought that taking the class could help me if I ever taught a child who was hard of hearing.  I never taught a child who was hard of hearing, but that sign language class has been invaluable.  That's because, 22 years later, I'm still using sign language daily.  

For those who’d like to explore sign, either out of curiosity or because they need to learn it in order to communicate with someone who signs, my first suggestion is to take a class.  Online courses are a good start, but being in a setting where your new skills can be put to the test with instant feedback from someone live and in person is beneficial.  Classroom setting, as well as opportunities to go out into the deaf community or to participate with hearing groups who sign, are also great ways to learn the language.  For that type of instruction, I'd suggest checking out your local community college or a disability resource center to see what they offer.  A local special needs parent group may also be able to recommend a course or a teacher, too.  

Some groups and organizations may have lending libraries where you can check out signing books and materials.  The local public library could also have resources to check out as well.  Books and signing materials that I like have come from the following groups*:  IDRT, Garlic Press, Lifeprint, and Signing Time.  We have books, flash cards, games, CDs, DVDs, computer programs and are so grateful to have the material at our fingertips.  Using those while also fully immersing our entire family in sign language years ago changed our lives.  It changed our lives for the better.  

I could never predict that I’d be signing with my own hearing child, but I do.  Ronan can hear everything we are saying; he just can't talk yet.  I pray that he one day will, but until he does, I encourage him to sign what he wants, what he needs, and what he is thinking.  His siblings do a great job of encouraging him to do all of that, too.  
xo, Cat

*I have not been paid to endorse any one of the companies mentioned; I'm sharing that I've bought or used their products to help encourage my son to sign.

Sunday, March 27, 2016

Stop and Go

Well, that didn't take long. 

Tribeca updated the statement.  What had been perceived as a triumph to parents like me, that the documentary VAXXED would be shown at the upcoming Tribeca Film Festival, turned into yet another disappointment.  I wish I could say that I'm not surprised that the opportunity for a conversation about vaccines came to a predictable stop, but after reading the updated statement, I'm not surprised.  

From the Tribeca FB page: 


Statement from Robert De Niro, co-founder of the Tribeca Film Festival, regarding VAXXED at the Festival:
“My intent in screening this film was to provide an opportunity for conversation around an issue that is deeply personal to me and my family. But after reviewing it over the past few days with the Tribeca Film Festival team and others from the scientific community, we do not believe it contributes to or furthers the discussion I had hoped for.
The Festival doesn't seek to avoid or shy away from controversy. However, we have concerns with certain things in this film that we feel prevent us from presenting it in the Festival program. We have decided to remove it from our schedule.”

VAXXED will no longer be showing at the festival.  The movie will be still be made available, so no worries on that.  It's gotten some great press despite the awful press it also received.  Any kind of press can be good.  One of the pluses is that it probably piqued more of the public's interest.  I know that when I see a story start to trend, I check it out.  With all the press that VAXXED got, and so quickly I might add, surely people were curious about all the fuss and started to look things up on their own.  We should encourage that because moves like the one Tribeca just pulled are just a reminder that someone has a firm grip on the media which now includes the folks at the Tribeca Film Festival.  
So, if you're still curious about all that fuss like who Andy Wakefield is and what's all this talk about a CDC whistleblower and could there really have been a cover up about the MMR vaccine, follow the VAXXED Facebook page for updates.  Listen to this recording, too.  When the movie is released, plan on watching it.  If what you discover in the movie does more than pique your interest, buy it.  Share it.  Talk about it.  The media may try to silence you as they did Robert De Niro, but keep talking.  Just as it has been for years, it's up to us to keep the vaccine conversation going. 

xo, Cat
Written by my vaccine-injured son.
 One of the first words he ever wrote.  

Saturday, March 26, 2016

The Opportunity for a Conversation

As soon as I saw the trailer for VAXXED, I knew that the mainstream news would begin to regurgitate rotten reviews of Andrew Wakefield.  
Click here to see the trailer. 
Since Wakefield is the man behind the documentary, which is set to be shown at the Tribeca Film Festival, the news would surely have a field day Wakefielding Wakefield once again.  The news outlets tend do that whenever vaccines hit the headlines.  

I was right.  I read more rotten reviews than I cared to.  

The reviews should focus on the content of the film - which has everything to do with a whistleblower, the CDC and altered data from one of their own studies regarding the MMR vaccine, not about how one doctor who continues to be singled out by the media since the late 90s.  Thankfully, Robert De Niro, who established the film festival, spoke up late last week: 

“Grace and I have a child with autism and we believe it is critical that all of the issues surrounding the causes of autism be openly discussed and examined. In the 15 years since the Tribeca Film Festival was founded, I have never asked for a film to be screened or gotten involved in the programming. However this is very personal to me and my family and I want there to be a discussion, which is why we will be screening VAXXED. I am not personally endorsing the film, nor am I anti-vaccination; I am only providing the opportunity for a conversation around the issue.”

But before De Niro stepped in, the news spit out the same old same old.  They did everything they could to put a spot on Andy's reputations while ignoring the actual topic at hand:  vaccines.  I addressed the journalists who did this in an open letter last year.  In the midst of the measles mania, the misreporting, the flat out lies, and the simple copy-paste writing style that that was being passed off as a solid, fact-checked report needed to be addressed.  I sent this message to a local news station:
The public is bombarded daily with information.  From the newspapers to television to the internet, breaking news and news we can use is available and at our fingertips all day long.  People turn you on, tune you in, view your shows, listen to your interviews, and read your articles.  Reporting fair, balanced, investigative, facts used to be the norm.  What’s being aired, printed, and posted now is not.  We’re now being fed fear, half-truths, mistruths, and straight up lies. 
What should you do instead?
Do the research.  Do that before you open your mouth, before you write your article, and before you contribute unnecessary confusion about vaccines. 
Facts, not fear.  That’s what your viewers, your readers, and your subscribers expect.  It’s what the public needs to see.  It’s what the public deserves to hear. 
Cathy Jameson, mom to a vaccine injured child

Not surprisingly, I didn't get any responses from any of the reporters that I had contacted or called out.  But that didn't stop me from sending more emails.  

After seeing The Lancet paper be mentioned in last year's measles news cycle, I asked Ms. S, a reporter for a big media outlet, to check her facts before she choose to write again about vaccines or Wakefield.  Here is part of the letter I sent her:

Ms. S—
I believe it is important for parents to educate themselves on vaccines.  I also believe that those who write about vaccines should present accurate information. 
When you reference The Lancet, please make sure that reference it correctly.  The authors of that paper stated, "We did not prove an association between measles, mumps, and rubella vaccine and the syndrome described…" 
All too often the media misreports that finding.  They also twist the authors' words.  The authors' final words were, "We have identified a chronic enterocolitis in children that may be related to neuropsychiatric dysfunction. In most cases, onset of symptoms was after measles, mumps, and rubella immunisation. Further investigations are needed to examine this syndrome and its possible relation to this vaccine."*
So that you are aware, the findings from that paper have been replicated several times across the world and have come to the same conclusion:  that some children on the spectrum have gastrointestinal issues, and that some of those children with gastrointestinal issues have previously been vaccinated. 
I don't plan on calling anyone out for their mediocre and incorrect reporting this year.  I will, though, thank those who do take time to fact check, who go back to the beginning, who understand what really happened, and who report the truth.  There's a story behind that paper and those doctors.  No one is denying that.  But that story isn't the one that the public is seeing, hearing, and has been lead to believe for so long now.   

The story Ms. S— and so many others try to tell, that there was fraud, that there were arrests, that there was jail time served is quite fantastical.  Sadly, that misinformation continues to be cycled through the news today.  It trickles down to the home, to the workplace, and to online conversations.  Those online conversations can cause quite a stir.  

Just two weeks ago, a nurse was trying to lecture me and other parents about the benefits of vaccines on my friend's Facebook post.  She was adamant that we not fall for anti-vaccine scare tactics adding that the reason why parents don't vaccinate is because of "that doctor over in Europe who serving jail time for what he did!"  I wanted to ask her if she'd actually read Andy's paper, but before I got the chance, the nurse, who determined I was a crazy anti-vaccine parent, refused to reply to my comments.  It's a shame because I had just a simple question for her:  If, when you take the time to read the paper, you find the part where Wakefield and the other authors emphatically state that vaccines cause autism, can you let me know where it states that?  Because I just don't see it.  I let the other parents know that that nurse should be ashamed of herself for the scare tactics she was using and for telling straight up lies about Andy Wakefield.  Many of the other parents agreed.  

How mainstream news sources, and subsequently ill-informed nurses, portray Andy Wakefield is no representation of who he actually is.  For those who don't know who Andy is and want to know more, go back to the beginning.  Start by reading the paper he and his colleagues wrote.  Instead of relying on the news, do your own research.  Do that so when the opportunity arises, you can contribute facts, not fear, to the next vaccine conversation you are a part of.  

xo, Cat  

*THE LANCET • Vol 351 • February 28, 1998

Photo credit:  Screenshot from VAXXED

Wednesday, March 2, 2016

Seuss and Smiles

Mid-day motivation: a second cup of joe and a Dr. Seuss quote
It's no secret that we love Dr. Seuss.  But if you didn't know that, guess what?  

We love Dr. Seuss!  

I've written about Ronan's love of all-things-Seuss before, including the time he uttered a full sentence straight from a Dr. Seuss book.  That happened on a tough day that later turned out to be the most amazing day:

Half-way to school that morning, and after we’d said our morning prayers, the kids began talking about their last week of school and the fun events being planned.  In the midst of the excitement from my four typical kids, I heard something else.  “Look at me…”  Keeping my eyes on the road, I moved my rear view mirror to try to get a glimpse of my kids’ faces.  “Who said that?  WHO?!”  Little Buddy smiled.  Both little girls squealed.  With the proudest smile Big Sis calmly said, “Mom, it was Ronan.”  And it was.  I cocked the mirror a bit lower and saw that Ronan was pointing to that sentence on his favorite page.

“Look at me…”

After I shared that story, Ronan was gifted with a beautiful Dr. Seuss print.    

Ronan still loves Dr. Seuss.  Ronan's little sister does, too.  Her class was invited to bring in a Seuss book to school today in honor of Dr. Seuss' birthday.  We knew we had a few books for her to choose, but we did not know we had this many books!  It was so hard to choose just one, so she took them all in today. 
But wait!  There's more!  So much more!

Ronan has tons of books, quite a few movies, and a couple of games - and he does a great job sharing his stash of Seuss stuff with his super siblings.  They thank him by reading his most favorite pages aloud to him.  
We'll take some time to read through and to talk about our favorites Dr. Seuss stories when we're all together again later today.  Now, if I had to pick one...I don't think I could.  Dr. Seuss writes so well, his books are all so very good!

xo, Cat