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

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