Sunday, January 25, 2015

Amazing Grace

Yesterday, I remembered writing an old FB status while I was trying to figure out how to get to Mass with the kids this weekend. Juggling Sundays with hubby away for the weekend isn't easy.  The times that I've had to do that have brought both success and failure.  Fortunately, friends are helping me shuttle kids to and from Church today (thank you, friends!).  
I'm hoping that next weekend we can return to Mass as a family.  It would be nice to have a repeat of last weekend.  Ronan's capable of joining us, and staying in the Church for the entire Mass as you will read below.  While we wait for that to happen again, I'm going to add Amazing Grace to my playlist.  That song will inspire me, and it will remind me to keep our try, try, try, try and why don't we try one more time attitude.  I need that attitude because with it, we get to provide Ronan opportunities.  And we also get to see him shine.  

xo, Cat
July 2014 - I'm flying solo with the kids this weekend while their awesome Daddy works a second gig.  These are really long weekends for all of us. Little sacrifices that come with long weekends help make ends meet though.  We're counting down the hours to dinnertime when we're reunited.
On these weekends I usually book a sitter to watch Ronan so I can take the Bigs to church with me.  I forgot to do that this weekend. Since we don't skip Mass unless someone is sick or unless circumstances absolutely prevent us from going, the kids I brainstormed which Mass we could go to (aka, the one with the fewest people present in case Mommy has to quickly escape through a back door with Ronan).  We decided to go to the late Mass.
We got ready, had our extra keep-Ronan-happy-things and made it with one minute to spare.  As we walked in, the kids asked, "Do you think Ronan will make it today?"  I honestly didn't think Ronan would.  Silly me.  He rocked it!
Ronan sat with us and made it 25 minutes in the pew (or on my back when we had to stand).  Izzy, who willingly volunteered to help me should we need to leave the pew to the back area, scooted out quietly to the narthex when Ronan had enough of sitting and being super quiet.
Izzy stepped in to encourage Ronan to stick with us (with help from youtube on my phone).  She held his hand and stroked his arm to keep him calm and happy.  Ronan usually doesn't interact with anyone at Mass (unless it's to protest) but shook hands with THREE people when it was time for the Sign of Peace!  Izzy beamed--she is so proud of that brother of hers.
We were able to go back in with the rest of the kids for Communion. I walked down the aisle with Ronan riding piggy back. As we approached Father, Ronan stayed still and rested his head on my shoulder.  He watched me and then bellowed a nice and loud "YUM" in my ear when I received smile emoticon
When we got back to the pew, I was greeted with smiles from Foina, Little Buddy and the Littlest Pickle.  I hated to be separated from them, but it's what we have to do.  The kids gave Ronan a thumbs up and gave me the biggest smile showing how proud they were of Ronan.
Amazing Grace was the after Communion song...after having some very trying experiences with Ronan and resenting all the medical crud he's dealing with lately, this song, its message and the timing was so, so perfect.  I usually cry when I hear this song, but today, I held onto every word and felt a peace wash over me.
Thank You, God, for a beautiful and peaceful Sunday.  I really needed it.

heart emoticon
<3 , Cat

May your Sunday be full of peace, hope and wonder!

Saturday, January 24, 2015

No Comment?

Just like I hear that people can't wait to see what I will share on my Sunday AofA posts, I can't wait to see what sort of responses I'll get from our readers.  I have received hundreds of comments over the years.  Most of the time the comments are reflections of what I've shared.  Sometimes the reflections include a suggestion for me to try with Ronan.  I take time to read every comment because I know that it takes time to write it and to share it.  If you have any comments on the posts that I've written here on this blog, I'd love to read them.  I've set it up so that people can comment on all the posts.  So far, I have one comment.  Yay, me!  
 In doing some research last week for an article, I popped over to the AofA site.  I was looking for a particular statistic in someone else's post.  I pulled up the website ready to do a few searches.  Instead of making searches, I practically fell out of my chair.  I had gotten a new comment on a post that I had written last fall.  I hadn't revisited my Vaccines Cause Autism piece, but it had gotten some new hits and some new comments.  Yay for more hits!  And yay for new comments!  

Well, NOT yay for this particular comment:

You are the worst journalists ever! I know 4th graders who could beat in a debate about this. I'm not insensitive, but everyone knows that vaccines do not cause autism. You are not an expert on, neither is the whistle blower.

Um.  Thanks?
That comment, like another one that I'd recently received, seems to be the running theme on several vaccine-related articles, blogs and posts that I've seen lately.  The other comment that I got?  It was made on that same Vaccines Cause Autism post.  It made me pause.  

I read it.  

I reread.  

Then I laughed out loud:  

yall crazy mofos

After the day that I was having though, I totally needed that laugh.

Trolls, bots and those adamantly oppposed to vaccine choice have left their mark on many of the blogs and websites that I frequent.  I've gotten used to the vicious language and the illogical accusations being lobbed.  I'm not letting their words bother me.  

With the increase in the one-sided news coverage of vaccines, I'm prepared to see an increase in negative comments.  People are working round-the-clock against what moms like me are sharing.  As tempting as it is to respond to the hateful responses, I'll keep focused on writing about my experience in the hopes that it helps another family.  

Now, if ever I am tempted to respond to the bots, trolls or shills, I'll remind myeslf to pause.  To take a deep breath, and to look back at other comments that have been left for me.  Those other comments are much better to read.  They are reflective, encouraging, and kind.  Like this one, left by a long-time reader who gave me one of the nicest compliments that I have ever received.  It's this type of comment - one offered straight from the heart - that I love to read:

As a loyal reader of AoA I am as eager to see what is on your mind every Sunday as I am eager for each and every other post the rest of the week.
Even as a father, I live many of the same emotional roller coaster rides you so eloquently describe - its like I have someone doing my homework for me every single week.
The promises you list ring true for many of us but the one that means the most to me is the promise to continue to speak the truth and share Ronan's story. I believe I speak for many of us AoA diehards - you are our Erma Bombeck of the Bio-Med Autism world.
Looking forward to another year of ups and downs, triumphs and tribulations of Ronan and the crew at the Jameson ranch.

The words in that comment have carried me through many days - good days and tough days.  But more than that, because those words were reflective, encouraging and kind, they've been etched on my heart.  I hope to keep them there forever.

xo, Cat

Thursday, January 22, 2015

Life is Sacred

Fourteen years ago, I was in Washington, D.C. for the March for Life.  It was my first time going to the march.  I was pregnant with my first child.  Today, that child is heading to Washington, D.C. to walk in the March for Life for the first time.  I wish I could have gone with the group, but I am being called to stay closer to home today.  

Life is sacred.  We appreciate those who are taking time to share that message today.   
For those who are in D.C. today marching to end abortion, we support you.  
For those who are in D.C. today braving the cold to share the right to life message, we pray for you.  
For those who are in D.C. today standing up for the lives of the unborn, we thank you.  

xo, Cat

Wednesday, January 21, 2015

Say My Name


I have heard Ronan say Mommy only one time in his entire twelve years.  

Mommy.  One time.  I'll never forget that day.  It was in September of 2005.  

My sister and my Mom had come for a visit.  After getting the kids tucked into bed, we cleaned up and got ready to play a game.  A few minutes into the game, I could hear Ronan stirring in his bedroom.  He hardly ever fell asleep right away, so hearing him stir was not uncommon.  

With the little ones tucked in, it was time for the adults to relax.  My Mom, sister and I were going to play Scrabble.  We set up the board and sat in the dining room.  I let Ronan continue to play quietly in his crib as we sat down.  Ronan had some books and his favorite stuffed animal, Doggy Dog, in his crib.  He, like my oldest, loved to look at books at bedtime.  Since I'd just put Ronan down, I wanted to wait a few minutes before checking on him.   

We could hear Ronan babbling as we started to play.  He had babbled quite a bit that night and continued to do so after being tucked in.  Typically, babbling is an early speech skill that can lead to speaking.  At this point, speech should have been old hat for Ronan.  It should've been.  And it would've been had we taken a different path.  But I didn't know then what I know now, and as a result of that, Ronan lost his speech.  Words were no longer being formed, and silence crept in.  

During that time, Ronan went through long stretches of eerie quiet.  I had no idea how long these stretches would last but encouraged Ronan to use his voice when I could.  I longed to hear the words that Ronan used to say.  I ached to hear him call me mama again.  I hadn't hear mama or any of the other words Ronan that had acquired before he got sick for quite some time.  Strangely, the babbling that Ronan used after he lost his speech sounded more like jibberish than the more functional babbling he'd done prior to speaking.  

But I welcomed the babbling.  Babbling was a good!  It meant that physically, some things still worked.  It was just a matter of getting those things to work together.  Things worked together the night that my Mom and my sister came to visit.  

After the Scrabble game had been set up and a round or two had been played, Ronan was still awake in his crib.  While waiting for my turn, I thought maybe I'd go peek in on him.  He was getting louder.  I hesitated though.  His babbling sounded different.  It sounded like vocalizations.  Some actually sounded like verbalizations.  Not wanting to interrupt this spurt of language that I thought I heard, I listened for a little bit longer.  That's when I heard it:


Such music to my ears!   

He said it as if he'd been saying it for years.  


Mommy....that's me!  

With how sick Ronan had gotten, and with how many milestones that he'd lost, I was desperate for a breakthrough.  Saying Mommy was a big one.  I remember smiling and not being able to stop smiling.  Feelings of hope and happiness flooded over me.  I felt like every door that had been slammed shut were now swinging wide open.  I was so excited, and I couldn't wait to hear what else Ronan would say.  

Ronan didn't say Mommy again that night.  He hasn't said it since then either.  Today, Ronan still struggles with speech and language.  He uses sign language and a voice output device to communicate because he has still not regained his speech.  I'm grateful for every communication attempt Ronan makes with sign and with his device, but I long to hear his voice.  He will call for me, but it isn't Mommy that he says.  When Ronan calls for me, he calls me Em.  

Em.  It isn't Mom or Mommy, but I love to hear Ronan say it.  When he says Em, I immediately look at Ronan.  I reply, "Yes?" and I wait for Ronan's request.  His requests are simple - to refill his bowl with a snack, or to start his favorite movie, or to change the Wii disc so he can play a different game.  Whatever the request is, Ronan knows that when he comes to me for help, he gets help right away.    

Em.  It's the first sound of the word Mommy.  Mommy.  Mommy...that's me!  The one who believes fully in a little boy.  The one who believes in hard work.  The one who believes in hope.  The one who believes in miracles.
I'm still hoping to one day hear Ronan say Mommy.  That sweet voice.  The hopeful surge that ran through me.  Those endless possibilities that I had quickly imaged.  That moment melted my heart and filled me with such emotion.  I'd love to experience that again.  I'd love hear my little boy say Mommy again too.  How I'd love to hear him say Mommy at least one more time.  

xo, Cat

Tuesday, January 20, 2015

A Dose of Inspiration

It's been a crazy Tuesday.  From the moment that the alarm went off this morning to now, I've had to deal with one thing after another.  Since I've run out of quiet, write-until-I-want-to-write time, I'm going to share another AofA post today.  It's the story of a random meet up that I had.  The young mama I met reminds me so much of another young mama from years  

xo, Cat

No Greater Joy
Got-joyBy 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. 

I noticed one of the boys had mild eczema and felt compelled to say something. But to blurt out “Hey, your kid has eczema.  Will you tell about it?” didn't seem polite. I tried to start a conversation a few times but came up speechless.  A few more minutes past before I mustered the confidence to say something. 
I don't remember now how I started the conversation, but we ended up talking about a lot of things, including vaccines.  
By the time our conversations was over, the young mom and I had chatted about everything.  We talked about parenting.  We talked about the benefits of having kids close in age.  We discussed nutrition, vaccines and eczema.  I had just seen an article about a study from the 1950s make the rounds in some discussion groups about eczema, so I mentioned that I thought I’d read that it was recommended to not give vaccines to someone who has it.  This young mother had not heard this and was floored.  For a second I regretted opening my mouth.  But what could've been a conversation stopper opened a door. 
What I had shared turned into the chance to have another conversation.  The young mother realized she was not as informed as she could be.  She confided that she had worries.  But her pediatrician didn’t respect them.  She had quite a few questions.  But her pediatrician didn’t answer them.  She had concerns about her boys’ health.  But she realized she didn’t have the support she needed to help them. 
The young mom promised to read more.  I promised to guide her if she needed help.  I’d have to guide her from a distance though.  My car was finally ready.  We parted ways with the promise to keep in touch.
It was a few months later, we found each other again.  She messaged me, and I quickly replied.  Thrilled to reconnect, and ready to answer as many questions she warned me she had, our friendship blossomed. 
In the two years since our random meet up, we continue to discuss all sorts of things—holistic doctors, homeopathic remedies, childhood vaccines, homeschooling, trusting your gut and finding and keeping strength while parenting—no topic has been off limits. 
Because of how busy we both are with our families, we don’t get to meet up as often as I’d like to.  But we have had a few get togethers, most recently a play date that was full of lots of play—imaginative, associative, parallel and collaborative play.  I couldn’t believe my eyes!  The boys had grown both in height and in development.  And this time, I didn’t have to steal any glances.  My eyes darted around the room excitedly watching them enjoy the toys and the time we spent together.
While sitting at the table playing play dough with her older sons, I looked at the young mother and was filled with a great amount of joy.  She did it.  She made changes.  She took control of her children’s health.  She went against her pediatrician’s practice and found another provider willing to walk with her, not be condescending toward her.  How rewarding for her, and also for me as well.  She respected my thoughts and suggestions and found strength to turn things around. 
She has three boys now.  Three lucky boys are heading down the path to better health because of their dedicated mother.  Their mom nervously but bravely stepped away from mainstream medicine and what it was dictating.  Because of that, these children are on a different path.  They are going in a different direction, and I can see that it’s a good one. 
That wasn’t the first random and life-changing encounter I’ve had.  I’ve had a few more since the one at the car dealership.  I attribute these unplanned meet ups to the Holy Spirit.  I feel Him tapping me on the shoulder.  I hear His quiet message, “Say hello.  You must.  You have a lot in common.  And you’re the perfect person to help.”  I’ve ignored that message before and feel terrible that I did. 
I’m glad I found the courage to speak the young mom at the dealership.  She is now a friend.  Plus, she reminds me a lot of me—determined, passionate about her children and ready to do whatever needs to be done for them.  She is a good mom doing great things.  
Motherhood is rewarding.  So are friendships and experiences that bring great amounts of joy.  I have been blessed with many friendship, including some that have started with a random meet up.  I have a lot of respect for the moms I don’t plan on meeting but somehow find our paths crossing.  These moms are sometimes lost and sometimes feel helpless.  But they soon find out that they are actually determined.  They know that something needs to be done.  They see that things need to change.  When they realize that, they get a second chance.  They are now confident and no longer feel lost.  I’s then that they start to believe.  But these mothers don’t just believe in their kids.  They finally believe in themselves. 

No Greater Joy was originally posted on Age of Autism in October 2014.  

Monday, January 19, 2015

Reprinted, With Permission: Dream for Tomorrow

Even though I'm not in the same place emotionally as I was when I wrote this piece, I think that it's appropriate to share it today.  When I find that a day is tough, that it hasn't gone the way that I'd hoped it would, I find myself dreaming for a better tomorrow.  I'm hoping that today is good for all of you.  If it isn't, dream with me.  Let's dream together and pray for a better tomorrow.

xo, Cat

Dream for Tomorrow

By  DreamCathy Jameson
Today autism affects 1 in 50.  Odds are that more families will find themselves closer to an autism diagnosis today than yesterday.  Today doesn’t sound too promising, does it? 
Several times in his now famous speech, Martin Luther King, Jr. used the word today:
“I am happy to join with you today in what will go down in history…
…a great American, in whose symbolic shadow we stand today…
…we have come here today to dramatize a shameful condition…
It is obvious today that America has defaulted on this promissory note …
…as evidenced by their presence here today, have come to realize that their destiny is tied up with our destiny…
I say to you today, my friends, so even though we face the difficulties of today and tomorrow, I still have a dream.
I have a dream today.
I have a dream today.”
I have a dream too.  But my dream is for tomorrow. 
As far as autism is concerned and how it affects my son, today breeds dread and frustration.  It capitalizes on my fears.  The worry I have about autism and for my son keeps a tight grip on me.  It strangulates my thoughts and shrouds my thinking. 
Afraid of what isn’t being done for Ronan and for a great many other children, today brings no solace, just more anxiety.  Looking outside of my own home, today doesn’t look so good in other places either.  Newspaper headlines in America promote ineffective flu shots as our best defense against a temporary sickness.  They sing praises for immature celebrities’ behavior while neglecting to address a growing national crisis.  Headlines scream Look here! Look there! But just don’t look at autism.  Look the other way instead.

How can they tell us to look away?  Autism is a crisis that affects thousands.  From one side of our country to the other, it’s creeping into more communities than ever before.  But today in the papers, and within the groups that should care about it, the autism epidemic goes unnoticed.  So do the nightmares that come with it.  
So, I’m not living for today.  Nor am I dreaming about it as Martin Luther King, Jr. did.  Instead, my dream is for tomorrow. 
When tomorrow comes, it means that today is over.  It means that what my son faced because of today—overwhelming difficulties and unfortunate delays, will be but a history. 
Tomorrow means that Ronan can try again. 
It means that I, too, can try again. 
Tomorrow can open doors, doors that wouldn’t open today. 
Tomorrow means we can fix today’s mistakes, and fix them to our advantage. 
Tomorrow can bring change, changes so many of us need.
Tomorrow can be the day that makes all the difference in the world.
Will tomorrow in fact be better than today?  There’s no guarantee.  But from what I learned today, and how some of it wasn’t enough, I have another chance.  I have the chance to rise up and greet tomorrow with a clearer head.  I can greet tomorrow with more experience and more knowledge.  I can greet it with strength.  I will do that with confidence.  I will do it because the dreams I had had for Ronan, for myself and for today were not fulfilled.  Those dreams won’t matter anymore after today.  They won’t matter because I plan on successfully achieving the dreams I have for tomorrow. 

Dream for Tomorrow was originally posted on Age of Autism in January 2014.  

Sunday, January 18, 2015

Going to Mass With a Special Needs Child

It's become a very rare occasion that we all get to go to Church together, but we did just that today.  We headed to the late Mass as an entire family - all seven of us...including Ronan!  Ronan hasn't been able to sit through Mass for quite some time, but we can't get him used to the routine and to the expectations unless we bring him to Church, right?  

So off to Mass we went.  This time, as a family!

Ronan lasted 22 minutes before he and I had to duck out the back door.  We were back in the car two minutes later.   

22 minutes.  It's a start.  And it's loads better than the last time Ronan tried to go to Church with us a month ago.  On that Sunday, Ronan wouldn't get out of the car.  Instead of cooperating, Ronan offered tears, tears more tears.  
We had his Bag of Tricks with us as well as the promise of a fun outing afterward, but no amount of prompting or assisting helped.  Ronan wouldn't budge.  

We've been as creative as we can be trying to get Ronan out of the car, into the Church and to sit through Mass, but we seem to have to start, stop, restart, start again, take a break and start from scratch all over again.  As difficult as that is, we won't give up on taking Ronan to Church with us. We'll just try again another time.  

Keeping the faith.  Always.  
We know not to push Ronan too much.  Pushing a child with special needs to do something that they are not able to do can lead to disaster.  We never want lead Ronan to disaster.  He's faced enough of those already.  So next weekend, when it comes time to go to Sunday Mass, we'll try again.  If he's not ready, if he's not successful, if we need to start over one more time, we'll do just that.  For Ronan, we're ready to try, try, try again and to keep trying every single time after that.

xo, Cat

Thursday, January 15, 2015

#tbt - Vaccine Schedule from the 80s

It is no secret that I love the 80s.  When the kids' school hosted an 80s dance, my oldest asked me, "Mom, do you have anything I can use or wear for the dance?"  

"Um, yeah, I do!"

You can take a girl out of the 80s,
but you can't take the 80s out of this girl. 
I showed Fiona my diary, some legwarmers, a 'vintage' M&M mock Swatch watch, an old party invitation full of 80s references, my Rubik's cube and my Trapper Keeper.  By the way, the Trapper Keeper is home to my rocking sticker collection.  Don't be jealous, but I have some radically awesome stickers in there.  

It was great to walk down memory lane with my daughter and recall how fun and simple my childhood was.  After showing her my things, Fiona asked if I could be a chaperone at the dance.  I told her that I wished that I could, but it was going to be held on the same night that Ronan was being admitted to the hospital for an overnight EEG.  She went from being giddy to being sad.  But Fiona understood.  I promised her that I'd be there in spirit.  I also promised her that I'd turn on some awesome 80s music in Ronan's hospital room and dance with him.  That made her smile.  The on-going effects of Ronan's vaccine injury interrupted our family's life again, but she took it in stride.  

I was reminded about the 80s this week when I saw some chatter about the 1980s vaccine schedule.  Some people suggest that we should return to that schedule.  Other people are saying that that's not the answer.  Here's a great ad comparing the 80s schedule to what was current in 2008 when the ad was published in several large newspapers:
Thank you, Generation Rescue!
What a difference back then.  I can see why the 80s recommended schedule is attractive to some folks.  It's even more attractive when you compare it to today's recommended vaccine schedule.  And when you look at the autism rate today (1 in 68)?  Holy smokes!  

And what about now?  

More have been added now - as more more shots have been added to the recommended vaccine schedule so have more kids been diagnosed with autism.  If you haven't taken a peek at what is being recommended for children today, go ahead and pop over to the C D C's website to see it.  I'll give you a hint - it's A LOT.  

Going back to the past to when things were a little bit simpler would be fun, but I don't think going back to the 80s vaccine schedule is the final answer.  I do agree, though, that something has to change with regard to the current schedule.  I'm shocked at how many vaccines are on it.  I personally think that it's not only too many too soon, it's way too many and way too soon!  Thank goodness parents can opt out of what is being recommended.  I know that that option isn't available to everyone, but for those who find that vaccines are not the answer, that option can be a lifesaver.  

Save a life.  Yes.  I will always support that. 

xo, Cat

Wednesday, January 14, 2015

Brainstorming and Thinking in Pictures

I brainstorm writing ideas all.the.time.  In the car, while folding laundry, while getting dinner ready.

Brainstorming is great!  

But I don't always get time to write down my ideas.  

Having no time to write is bad!  

I end up losing the really cool thought that I had when I finally have time to sit down to write, or I have too little time to really do the idea justice.  I want to do something productive while I have a few minutes of peace.  What's a passionate writer to do?  Be creative using a different outlet!

Since I'll sometimes think in pictures, I thought why not make some pictures.  Advertisers do that all.the.time with whatever product or idea they're selling.  I remembered exactly that while listening to the news on the radio one day.  I thought why not just use pictures too.  So I attempted to make some mock magazine covers.  I guess I did a good job with the images on the front cover because someone asked where they could buy the magazine!  I made a follow up post and got a lot of hits on that one too.  

The visuals, infographics, memes, or whatever you want to call them, can be just as effective as an essay, short story or article.  Here are a few that I've put together that have accompanied my writing or that have been shared on the AofA and TMR Facebook pages:


Vaccine bullying.  It happens.  

Opt out of school shots?  YES, you can.  

                Oh, April. How I've come to loathe you.  


You know this, right?  If you vaccinate
your kids, you should know this. 


Me! Me!  I'm a Thinking Mom!

Keep going, mamas and papas.  You can do it!

Keeping my focus on my kiddos.
Love them to bits and pieces,
cats and meeces...and little dogs too.

xo, Cat

Tuesday, January 13, 2015

We've Come a Long Way

Ronan +Sensory Issues  + Doctor Visit + Anxiety From Past Experiences + The Unknown = An Unpredictable Situation

We've had our fair share of unpredictable situations.  When those happen at a medical facility or in a therapy clinic, we can be sure to add an extra dose of anxiety, a lot of tears and a side of frustration.  That was how I imagined Ronan's appointment would go last Monday.  But, despite the bad news from our doctor (that Ronan has a broken tooth that must be fixed and that will require going under anesthesia), Ronan rocked the appointment!  

It wasn't easy in the beginning, but check out how relaxed he was by the end of it.  Normally, Ronan immediately requests to use his iPad or asks for my phone to watch Youtube videos, but he grabbed a book (Goodnight Moon) on the counter that was next to him and actually read it!  
I'm just sitting here looking all sorts of relaxed...
I love the fact that Ronan is coping better while we're asked to wait for an appointment to start. He's come a long way in the waiting department.  

Transitions have been difficult for Ronan.  I can't pinpoint an exact date to when that started, but I know it was after he was vaccine injured.  Ronan was always an easy going baby.  He was cuddly, interactive and just so happy.  Post vaccination?  That's another story.  The sensory issues, the can't-sit-still, the won't-follow-directions, the must-turn-right-out-of-the-driveway-and-NEVER-EVER-turn-left tantrums, the stress of going from one place to the next.  As Ronan's health tanked, so did his success at making transitions.  Those worsened to the point that we couldn't go anywhere.  

Since life goes on even when one doesn't want to participate in it, we had to create a plan to make transitions easier for Ronan.  Using visual schedules have helped a little bit.  Some verbal prompting has helped too.  But for Ronan, what's helped the most is having backpack filled with the following items.  When Ronan sees that it's coming with us, he transitions better.  We don't always have to use what's inside, but having these items has gotten us out of a pickle more times than not.  

Ronan's Bag of Tricks

iPad and charger - we've arrived early, late and on the wrong day for appointments.  Ronan doesn't play with toys in the waiting room and doesn't always do well sitting down waiting for me to entertain him.  The iPad has been invaluable and now comes with us.  Ronan doesn't always reach for it, but I bring it whenever we go out.  

favorite books - Ronan loves Dr. Seuss books and will listen to an entire book being read to him now.  YEEEHAAAWWW!  We used to only be able to read 2-3 pages to Ronan per sitting, so to listen to the entire story and to point to words on the pages and to enjoy and to ask for it to be read again is an accomplishment.  Being able to do that while sitting in a waiting room or an exam room is an amazing accomplishment!

snacks/drink - not every place allows food or drink in their facility, but when appointments (or food shopping, sports events or Mass) run longer than usual, when we have to use an emergency stash of snacks, a handful of craisins, a granola bar, or a few gluten-free cookies can buy us some time before we can get to our next sit-down meal.  

diapers/wipes - Ronan is still in diapers, so I pack at least half a days' worth of supplies in case we are out of the house longer than we expect.

change of clothes - some of the facilities we go to are over an hour away from home.  Several times, Ronan has peed through his diaper and clothing and needs an immediate change before we even make it to see the doctor.  I keep a change of clothes in the car and a full outfit in the backpack.  I also keep a plastic bag in the backpack for the soiled items so that they do not leak on anything before we can get back home to launder them.

cash/money -  money, don't leave home without it!  Unfortunately, I have.  Nerves get the best of me before we leave for the appointment and I've been caught unprepared when we arrive.  A co-pay, the valet parking (if it's available), the food court (if we have missed a meal due to the length of an appointment), a toll, or filling up with gas on the way home - they all require money.  

Great Big Book of Everything - we have several versions: a medical, an educational, and a folder for the bills and the EOBs.  The medical binder is organized by speciality (Neurology, Cardiology, Endocrinology, etc.) and are either in date order or in order of most important documents (treatment plan, lab testing results or latest appointment notes).  Having these documents readily available has helped keep our appointments running smoothly.  
One of several Great Big Books of Everything
Those are the physical things that make medical appointments easier for Ronan.  I require different things:

Patience - ahhh, to breathe easily and to have enough patience.  I sure do know what it's like to not have any, so I mentally pack a little bit of it in my back pocket.  I keep it on hand in case we run into delays, encounter a frustrating moment, or have to deal with someone sporting a rotten attitude while we are out and about.  

Determination - so many people have acted like obstacles in our way over the years.  Instead of helping us, they've worked against us.  Even when someone says matter-of-factly, "Mom, you know Ronan best!", I discover that they could care less about my input.  They railroad me, my opinion and what really is best for my son.  Because that has happened, prior to appointments I make sure to read up on the current issue we're facing to make sure I can be an active participant in the conversation the doctor or the provider hopes to have with me.  A recent example:  when we discovered that Ronan had a broken tooth, we asked for help from a dentist we could trust.  We asked for information prior to having Ronan examined by his dentist.  I was able to learn key words that Ronan's dentist later used.  I asked able to ask for suggestions that Ronan's dentist later stated were best treatment options for Ronan.  With the help of the dentist we trusted, I was given a head's up on what Ronan's dentist later confirmed could be the worst case scenarios.  I hate to use the term armed, but after being able to consult with that dentist we trusted, I felt like I was armed with enough useful information to talk to and to talk with Ronan's dentist.  I've been talked to and talked at by some of Ronan's doctors, but being able to talk with them about Ronan's care is a lot better.  

Faith - oh, the prayers.  Before any appointment, I say prayers over and over and over again.  Depending on where we're headed and depending on who we're going to be talking to, I'll pray even more.  I will sometimes send out a prayer request with a specific intention to friends and family when I can.  For our more serious medical issues and appointments, I'll do a search to see which saint is the patron saint of the particular problem we are facing.  I love that I can pray and that other people are willing to offer their prayer time for Ronan.  Having that type of support is so comforting.  (By the way, St. Apollonia is the patron saint for those suffering from teeth problems.)
St. Apollonia, please pray for Ronan!
Caffeine - not gonna lie, I get nervous before some appointments that we have to go to.  I will bring an extra cup of coffee with me, or I'll hit up the vending machine for a cold can of Coke.  I know, I know.   Coke isn't the best drink for me - or for anyone for that matter, so I promise that it is not very often that I reach for it.  (P.S. Thanks for worrying about me :) )

My Voice - Ronan used to have speech.  He was able to say some words.  But when he went silent, when he lost his voice, I gained mine.  Speaking up hasn't been the easiest thing to do, espeically when some doctors and providers throw their hoiler than thou attitude in my direction, but speaking up is the most important part of advocating for my child.  

Confidence - this has been the most important thing to have at some appointments.  With it, I've declined certain "standard operating procedures" that are contraindications to Ronan's condition.  I've repeatedly had to say "thank you, but NO thank you" for the second, third, fourth, fifth time because I wasn't listened to the first time.  It isn't easy being confident 100% of the time, but Ronan depends on me to do that.  So, when I find myself facing a situation in which I am questioned, doubted, or about to be ignored, I keep my emotions in check, stand proudly, and speak as confidently as I can.  

I can't physically pack everything that I need to bring with me to Ronan's appointments.  But I can make sure that I prepare myself well in advance in order to advocate for Ronan.  Being prepared and being ready helps make appointments run smoother.  Those things help, and of course, having Ronan's Bag of Tricks does to.  
Ronan's Bag of Tricks
It goes with us to appointments, to the store,
to Church, to siblings' sports events...
xo, Cat