Sunday, January 31, 2016

Parent to Parent: Advocating for a Cause

I have a post on AofA today about a vaccine bill that was recently introduced.  That bill took a lot of parents by surprise.  Once they realized how bad the bill was, lots of people banded together.  Many wanted to do something but didn't know where to start.  

I don't have all the answers, but I have a few ideas I can share with parents who are new to advocating.  I included a list of suggestions at the end of my article and wanted to post them here as well.  

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All in all, as of the end of January 2016, 17 states have introduced some sort of vaccine legislation. From one parent to another, if you’re tippy toeing into advocating for your rights, you may find these suggestions helpful: 
  1.  Learn who your representatives are – do an internet search of your local/county, state, and federal representatives.  That information, plus so much more, can also be found on the NVIC Advocacy portal.  
  2.  Start a conversation – talk to your reps!  They won’t know what your thoughts are unless you contact them.  Support the good bills and voice your concerns when the bad ones crop up.  
  3.  Get some face time in – my representative’s Chief of Staff said that it’s always good for parents to make calls and to send emails, but the face-to-face time, as difficult as it can be to schedule, is important, too.  It might be more difficult to meet during the legislative session at the capitol, but if it’s not a pressing issue, constituents can make appointments when the session is over in the local district office. 
  4.  Begin to network with others – as you begin to read and research topics that you are passionate about, speak up about them.  As your voice gets louder, you’ll likely run into other like-minded people.  Depending on your comfort level, you can network online (like on Facebook groups).  If your representatives host town hall meetings, try to attend.  You’ll meet people there and can learn how to get involved in local-to-you activities. 
  5.  Pace yourself – reading, researching and responding to bills and keeping in touch with lawmakers takes time.  Juggling that with my family’s every-day needs isn’t always easy.  As much as I want to be there when bills are discussed, I cannot.  On those days I can fight for my rights from a distance – from home.  I can still do so much from home like write letters, send emails, and make phone calls. 
  6.  Stay the course – one of my favorite Winston Churchill quotes is, “Never, never, never give up.”  The tough days will be tough, though, which is why I also like Saint John Paul the Great’s quote, I plead with you--never, ever give up on hope, never doubt, never tire, and never become discouraged.  Be not afraid.”  On the days where you’re tired, where you feel like your voice isn’t being heard, and where your rights are seriously being threatened, stay strong and stay the course.  When your voice is finally heard, when your rights have been fought and won, and when justice prevails, it will all be worth it. 
Do you have any helpful tips?  Share what's worked for you in the comments below.  Thanks, and happy advocating!

xo, Cat

Monday, January 25, 2016

Bookmarking the Truth


When the blizzard kept us home for days on end, I had some extra time to clean out the closets.  From that cleaning spree, I have 2 large bags and a box of items to donate.  The items may not be brand new, but they are good condition and will hopefully serve a purpose for someone else.  

The girls were not sad to see their things go.  I wasn't either.  The things I was donating to the give away pile were a few t-shirts I no longer wear and a pile of books that I knew that I'd never read cover-to-cover.  Only a few of the chapters and topics in the books interested me.  

I'd bought the books one or two at a time at thrift stores over the last few years hoping to use them for a research project.  Instead of finishing the project, the books sat and sat and sat on one of our bookshelves.  I spied them over the weekend and decided that it was time for them to go back to the thrift store.  But before they go, I'm going to add a page of my own to each book. 

Consider it a missing appendix or sorts, but these books, all of which are meant to educate women during pregnancy or the first few years of parenting, are missing something:  the whole truth.
  
- In sections regarding autism, there's no hope that autism can be prevented. 

- In sections describing vaccines, there's no warning that vaccines come with very serious side effects.

- In other sections of these books, when listing the vaccine schedule, there's no information about vaccine exemptions.   

- In sections describing well-baby visits to the pediatrician's office, there's no mention that parents can and should question what their providers are saying.  

What can be done?  Why, add a bookmark with updated information in those very sections that need clarification, of course!  

The bookmark is simple - on one side it lists a few websites and names of books I've found helpful.  On the other side of the card is a simple yet incredibly important handwritten message from me that was originally said by a friend of mine just a few years ago: Parents, Do the Work!  
As is to be expected, since I've bought some of these books at thrift stores, several of the books are rather old.  Some information is still relevant but other data in the parenting books is no longer current.  Parents can easily find more current information on pregnancy, on parenting, and on what happens during well-baby and well-child visits now while reading online.  But some people, like me, can't resist thumbing through books looking for information.  That's why before these books go back to the thrift store, I'm slipping that bookmark in.  It's simple but can lead a new mom or dad to some valuable information, information that I wished I had years ago.    

I like it when something I have in my possession can help another person.  Sometimes it's things.  Sometimes it's advice.  I don't expect everyone to take my advice, but it is nice to know that other people occasionally do seek it.  When what I have to offer is gently used clothes, toys, or books, like the ones I'm donating this week, I hope that they land in the hands of someone who truly needs it.  Those books were like a motherhood bible to me.  I'm sure they will be that to a new generation as well.  

Who knows where the information I've inserted in the pages of the donated books will go.  If only one mom or mom-to-be reads it, I'm happy because what she reads will certainly lead to more reading, more wondering, and ultimately, some questioning.  As I've learned from past experience, reading and questioning and wondering is never a bad thing.  They are all are very good things indeed.    

xo, Cat

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Here are just a few of those useful websites that I've bookmarked and that I also love to share:

AofA

NVIC


SafeMinds


TMR


Trace Amounts


Vaxxed 

Got a favorite book or website to share?  Go ahead and share it in the comments below.  





Thursday, January 21, 2016

Light in the Dark

Our plans for yesterday were cancelled.  Instead of running out into town with Ronan and his therapist, we stayed home.  I like stay-at-home days.  Ronan gets to sleep in, and I get to try to catch up on life.  Sometimes, I see the light at the end of the tunnel and actually catch up. 

With hours and hours of quiet time ahead of me, I made a new plan:  clean up the office.  Things were going well, but midway through the sorting and cleaning and filing I was doing, I reached for a binder.  It's a binder full of papers, none of which need my immediate attention.  I knew I should have saved thumbing through the binder for later.  But I didn't.  

As has happened before when I look through at those papers, a flood of memories wash over me.  The binder is home to my college papers.  It's full of dreams, memories, and moments in time that happened long, long ago.  

When I see that binder full of my work, I spend at least an hour looking through it.  I go through page after page after page of my old notes and my formal papers.  I didn't save all of my reports, but the ones I did save are ones that I must have been proud to write.  

I laugh when I think about my writing class when I see the papers I wrote for that class--I received so many low marks!  And that wasn't because I didn't try.  I tried so hard in that class, but even some of my rewrites failed to get higher than a C+.  Thank goodness those low marks didn't deter me from writing.  

Writing is therapeutic for me.  I know that it is for a lot of other people, too.  So, for no other reason than to share an assignment that has an element of creative writing that I did w-a-y back in the 90s, here's that short paper that I wrote for an English class.  (And as usual, when I find and old piece that I want to share, I've edited it a tad.)  

I don't remember the class or writing the paper or reading the book that I referenced, but I liked the imagery of the piece.  

I hope you'll like it too.   

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Untitled English paper, written in the Spring of 1991

"And at last, in its curved and imperceptible fall, the sun sank low, and from glowing white changed to a dull red without rays and without heat, as if about to go out suddenly, stricken to death by the touch of that gloom brooding over a crow of men." (page 212 of Great Short Works of Joseph Conrad, 1967).

As I walked around campus at sunset recently, I noticed shades of different colors being cast by the sun onto the buildings, trees and walkways.  I enjoyed seeing the slow but drastic change that befell the near-quiet campus.  As the sun slowly dropped out of sight, I felt a sense of tranquility as I continued my walk.  

While the sun continued its slumber, I noticed a complete change in my attitude toward the academic buildings that I study in during the brightness of the busy school day.   During the day, the sunlight mirrors the activity I see:  flowers opening to welcome a new day, cars rushing down the street, people hurrying to class.  The sun brought new birth and energy to a place that had been asleep during its absence.  But now, at night, with the moon providing the only natural source of light, the campus was less hurried, less busy and much less awake.  

Bathed in luminous, soft light, I enjoyed the silhouettes of familiar surroundings.  I did not have to work hard now but could enjoy the beauty of the school that I overlook while I rush from one class to the next.  Night slowed me down and opened my mind to new views.  However, the transition from light to dark aroused and heightened another awareness, that of being alone and at the mercy of whatever lay hidden in the darkened shadows. 
A sketch done by my son
Unlike during the day when I am surrounded by other students, I made sure of where I was, of who was near me and of how many street lamps lay ahead of me.  Because I am always on campus during the day and rarely at night, I took for granted the security that I feel from the sunlight that shines on me during the day.  

With "the touch of that gloom", night not only swallowed the sunlight but also the protection it provides during the day.  Despite my fear of the dark, the setting of the sun introduced the mysteries of the night.  I had the chance to greet the stars.

The darker the night became, the more stars I saw enter the sky.  For a moment, I forgot my fear and found the night to be crisp and beautiful.  While reveling in the quiet that surrounded me, I began to feel more comfortable with the darkness.  I felt something else, too.  I felt small. 

Thinking about the vastness of the universe, a universe I hardly know, made me realize how much I have yet to experience.  I finished my walk around campus feeling small compared to the open sky and yet I somehow felt alive.   Unlike Conrad's "gloom", my evening's walk wasn't filled with a mysterious, darkness of the night; it was actually rather pleasant. 

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So, it's not really earth shattering but more of a glimpse of what was going through my mind while taking a stroll on campus one evening many, many years ago.  I have a few other papers that I saved that I've wanted to share here.  I mentioned them in a post on FB once: 

Very interesting.  I found a stack of papers I wrote in college.  I don't remember writing them.  

The topics:  autism, the lottery, optic nerve death and a book review about the story of a mom of a special needs boy who had quite the journey building a team of professionals for her son because they finally listened and agreed with her.  

Funny how those topics eerily parallel some of my life's journey.  Except for the lottery so far...gotta win that sometime soon to support my habit and to continue to provide Ronan and his amazing sibs what they need.  

Interesting indeed!  And ha ha to whatever "habit" I was talking about.  The only habit I had then and still have now is ignoring piles of papers that need to be filed.  Those papers will get put away soon.  I promise...maybe after I do a little bit of writing.  

xo, Cat

Tuesday, January 19, 2016

Learning Through Play

"Playtime is a favorite past time for many kids.  It's important as it provides basic skills, skills that can last a lifetime.  Playing leads to exploration, to discovery, and to building relationships.  One of the neatest benefits, one that some kids don’t even realize is happening, is that they are learning the entire time that they are playing." 

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Little Buddy's recent LEGO creations inspired me to search for that paragraph.  It's part of an article that I wrote last year.  I submitted the article, but it didn't get published.  No worries, I can share it here!  Before I share that article, which I titled Learning Through Play, check out Little Buddy's latest.  
With a bucket of LEGOs, with loads of extra playtime, and with his imagination as his guide, he proudly showed me these last week.  He made BB8 first.  While telling me about how he built it, Little Buddy added, "I'm going to make R2D2 next."  

And he did.  

WOW!  

Little Buddy's LEGO creations: BB-8 and R2-D2
And now for the article that describes just a few of the benefits of learning through play:

"Learning through play happens every day.  It happens at home, at school, and wherever kids are allowed to play.  When kids are allowed to explore, to manipulate materials, and most importantly, are encouraged to have fun, they are able to do two things they do best:  being curious and playing. 

Kids accomplish so much while playing.  Exploring, touching, manipulating.  Most kids can’t help but pick up an object to see what it does.  Their curiosity gets the best of them.  Oftentimes, once they figure out what the object can do, kids can’t help but play with it.  That natural curiosity can inspire both intellectual growth as well as physical growth.  Those skills, ones that will see them through their educational career, can shape their future working career, too. 

When pretending to be a doctor, an astronaut, or an engineer, oftentimes, kids’ playtime mimics real-life activities.  It recreates everyday environments and real-life moments.  Within those moments, new information is discovered.  That new information isn’t just a discovery about the object that kids are playing with; it’s a discovery of information about themselves. 

During playtime, kids realize that that they are talented.  They discover that they have useful skills.  They can build.  They can problem solve.  They can make something out of nothing.  When they see those skills in use, and when they see that their efforts lead to success — like when they test the strength of a bridge they built with balsawood or when they attach the final piece of equipment to their roller coaster or when their last LEGO piece fits perfectly in their build, kids aren't only creating fun projects; they are creating a positive self-esteem. 

Playtime is a favorite past time for many kids.  It's important as it provides basic skills, skills that can last a lifetime.  Playing leads to exploration, to discovery, and to building relationships.  One of the neatest benefits, one that some kids don’t even realize is happening, is that they are learning the entire time that they are playing. 

Hands-on learning moments motivates kids.  It helps them to discover how things work.  It makes them realize how much they are capable of doing as well.  

Reading from text books and following directions have a time and a place in a child's life, but play should come first.  It's what kids do best."

I have a few more articles like that one that have yet to be published.  I'll share them after Little Buddy makes some more amazing builds.  

xo, Cat



Thursday, January 14, 2016

Sweet Child of Mine

It is very, very, very rare that I get to go to the kids' school anymore.  I'd love to volunteer and sneak back into the classroom, but, lately, my time is taken up with all things Ronan.  When I'm absent from school events, friends are so good to send me texts and pictures of all the fun going on.  The kids understand that I can't always be there, and they never complain about it.  
 heart emoticon
Well, today, I got to see a sweet child of mine during a school event.  How my heart swelled with pride! Izzy smiled when she saw me, but seeing me without Ronan, who is usually always with me, a look of concern fell over her.  

"Mom," she mouthed from the stage, "where's Ronan?!?!" 

I signed to her that he was okay and with someone else (thank you, therapists, for once again working your magic so that I wasn't caught in the two-places-at-once dilemma that plagues our family!).  She breathed a sigh of relief and got herself ready for what was coming next.  

I got to give Izzy a quick hug after she was eliminated in a contest that she knew she wasn't going to win but 'was gonna try real hard anyway' and snuck out of the school to make sure I could get home in time to greet Ronan.  As I drove home, this song came on the radio.  I was already smiling from ear-to-ear, and I couldn't help but smile a little bit more. 

If you know her, you know that IzBiz is something else. 

She is spirited.  

She is spunky.  

She is independent. 

She is determined.  

But most of all, she is loyal--especially when it comes to Ronan.

I love her with all of my heart.  And I love that she loves her big brother with all of hers 

xo, Cat




Friday, January 8, 2016

Breaking the Silence


Whoa. 

I'm not a big fan of covers, but this band's version is really good.  It was especially neat to hear after one of Ronan's therapists and I chatted yesterday about how vocal Ronan has been lately.  She wants to integrate speech into our ABA program.  I want to as well.  I think Ronan wants to also. 

Since our trip a few weeks ago, Ronan's verbal attempts are at an all-time high.  The ones we are hearing are breaking the sound of silence that we are so used to.  He said "shapes", a favorite word that is usually just typed.  Then he tried to say "blue", a word we've never heard him say.  And, for the last two weeks, every time he wants his big sister to say his favorite movie lines, Ronan looks right at big sis with those big brown eyes of his, utters what sounds like 2 sentences, and waits for her to reply.  

She does.  

He laughs.  

She waits.  

He asks her again. 
With each interaction, we witness peals of laughter, lots of smiles, and a boatload of hope and happiness. 

We've a long way yet to go, but I'm encouraged.  I like that Ronan's people are as well. 

xo, Cat