The School Advocate

The carefree days of summer are officially over in these parts.  Yesterday was the first day of school for my children.  And it wasn’t just the basic first-day-meet-your-teacher.  It was their first day of school in California.  We moved 2100 miles across the country at the beginning of the summer, so we were a looooong way from Indiana.

Now, this is not the first time that we’ve started a new school with Superkid.  We did it in preschool, kindergarten, and again in first grade, when the school that she went to for kindergarten in permanently closed.  So I’ve been around the block a time or two when it comes to educating teachers and administration about Superkid and her potential risks adn needs.  That’s why I was extremely pro-active about getting the word out to our new school about Superkid long before we arrived in California.  It was back in April, when we secured our rental property, that I began a chain of emails to inform the principal and school nurse about the new student they’d be meeting, and offer them the education and training required to keep Superkid safe and healthy at their school.

That meant is was particularly frustrating that, as of yesterday morning when I walked Superkid to the door of her classroom, I had not been able to secure a meeting with ANYONE at her school.  I handed Superkid’s teacher an 8 page packet of information that detailed her medical history, how that medical history affected her time at school, symptoms her caregivers should watch for, emergency contact information, and specific information to give paramedics if they had to be called.  I had two minutes to show the teacher the emergency contact information and say, “We really need to spend some time together so that I can offer you more education and training on my child’s medical issues.  Good luck!”  I spent the rest of the day at home feeling sick about leaving my medically fragile child with people who didn’t have a clue, and making all sorts of phone calls to get her the attention her conditions warrant from the school district.

There are a lot of details I could go into about the situation, but I won’t.  The outcome was positive:  by the end of the school day, I had a teacher and principal who were very eager to meet with me, ask more questions, and set up a time for me to educate and train school staff about Superkid’s unique needs.  Getting to that point wasn’t easy, but I’ve had some practice advocating for my child in the past.  As I mentioned, I’m happy so far with outcome of all of my efforts to advocate for her yesterday.  Knowing that some of you who are reading this are new to the journey of parenting a child with extraordinary needs, I’m going to share a couple tips on the art of advocation.

Tip #1:  Speak Softly and Carry a Big Stick

The little proverb attributed to Theodore Roosevelt basically means, “be kind and diplomatic, but if that doesn’t work, have a great military backing you up.”  I’m in no way condoning the use of violence when it comes to advocating for your child.  But I do highly recommend being able to speak in the calmest, most diplomatic, and sweetest of tones, even when you have to haul out the big guns with phrases like, “equal opportunity education” and “my attorney has advised me.”

As parents, we’ve all shared the experience of having one of our children demand something from us.  More than likely, we’ve dealt with our share of full-out tantrums thrown by children who want their demands met right then.  And there’s no question about it:  kicking, screaming, and tears certainly get our attention.  And if we’re not careful, they also get our defenses down enough that we’ll meet those demands.  But how do you feel after you give in to make a tantrum stop?  Are you exhausted?  Are you resentful?  Are you defensive?  Absolutely!

Well, the majority of the time when you are sorting through the various administrative assistants and receptionists along the chain of names you have to call upon to make anything happen for your child, you are speaking to people who are simply gatekeepers.  They can’t really do much to help you other than open the gate to let you into the inner sanctum of the people who have the power to take action.  The trick is knowing not just how to get the attention of the gatekeeper, but how to get the gatekeeper to let you in.  Plenty of people offer the “mamma bear” analogy when they talk about defending their children.  I’d like to suggest that when it comes to defending your child’s rights and getting them the help they need, it’s more effective to use the analogy of a wolf in sheep’s clothing.

Here’s where speaking softly goes a looooong way.  If you must call places like school offices, state funded programs, or the clinic scheduler, you are going to be speaking to someone who speaks to a lot of upset adults.  On a daily basis.  In fact, that person on the other end of the line probably gets yelled at everyday and really should be paid more to do what she does.  So, if you want to get her attention, you need to make yourself stand out from the crowd.  And you do that by being as kind and nice to her as you would your sweet little grandmama.  You chat with her for a moment, you explain your reason for calling in the most honeyed tone of voice, and you use plenty of pleases and thank yous.  And if per chance she doesn’t open the gate for you, you don’t lose your cool, burst into tears, and scream, “I DEMAND TO TALK TO YOUR SUPERVISOR!  I DEMAND AN AUDIENCE WITH THE HIGHEST POWERS THAT BE AT THIS OFFICE!  YOU HAVE NO IDEA WHAT YOU ARE TALKING ABOUT!!!”

Oh no, that is not what you say!  Take a deep breath, and try saying in the serenest voice just dripping with molasses something like, “Oh, I really appreciate your willingness to try and help.  I guess I’ll have to ask someone else, but maybe you know the name of someone else that could get involved.  Do you think that if I spoke to the school district’s legal office, they’d have a better understanding of the liability issues at stake, here?  Would you mind redirecting my call?”

Well, no one wants to get flack from the legal advisory office for not solving a simple problem that fell within their office’s jurisdiction.  So the person you were just perfectly lovely to is going to jump from her desk and interrupt her boss’s meeting to find out if maybe, just maybe, they can help the nice lady on line two.   As opposed to leaving a sticky note on said boss’s desk that says, “Some crazy lady called about her kid.”

Which brings us to Tip #2:  Know Your Enemy

That little nugget of wisdom comes from a book on ancient Chinese military tactics, The Art of War.  The point being, you can’t just run in and conquer a country without knowing what you’re in for:  the landscape, the culture, the people, the language.  You might get in with your army, but will you come out alive and successful in your campaign if you’ve ignored the geography and culture in your planning?

This military strategy is a particularly good application for dealing with schools and government organizations that you need to work with to get help for your child.  It’s important to know the layout of the land before you go in with guns blazing.  Educate yourself beforehand.  What is the legislation that created this organization or governs it’s services?   What are some of the current issues at stake within the organization?  What types of services are they legally required to offer?  What rights does your child have to receive those services?  Who decides which children get those services and who gives them?  Learn a few key phrases of the lingo, so that you can insert them into conversation as necessary.

Knowing more about the people you are speaking with than “they have something I want” is key to being able to work with them in a way that will benefit your child.   Utilize Google.   You’ll be surprised what you can learn and use to your advantage.  And I don’t just mean photos of the organization’s director frolicking on the beach in Bermuda with underage drinkers–I don’t condone blackmail.  But it sure doesn’t hurt to throw in a direct quote from that director’s speech on equal opportunity education at the most recent professional conference he attended to let him or her know you mean business!

And being able to toss out gems like that in the sweetest tone of voice possible is highly effective strategy.  Trust me.  Also trust me that memorizing key phrases from the Equal Opportunity Act never hurts, either.  Learning the lingo of the folks you are working with can get you well past the gatekeeper.  I can’t tell you how many times I’ve been able to speak with people simply because their secretaries thought I was a medical professional, not a hysteric mother.  And it’s not that I’ve said anything dishonest to give them that impression.  I’ve simply rattled off a few key phrases in a completely confident and professional manner that they might hear from one of their colleagues.  Impression given:  this lady knows her stuff, she must be one of us.  Action taken:  escort her to the inner sanctum.

The bottom line?  It takes a little time and research and even some experience to get results fast in a world that is restricted at every turn by red tape and legalities.  There’s a learning curve.  But with practice, you can learn how to work the system to be a good advocate for your child.

Best wishes to all of you as you advocate for your own children!

 

Pick a Cardiologist’s Brain About Cardiomyopathy

First of all, I would like to reassure anyone who might be wondering that the title of today’s post is not an announcement that Superkid has added cardiomyopathy to her list of health concerns.  Thank goodness.  Sorry if I caused any concern!  But cardiomyopathy is an important term to know, because it is currently the leading cause for pediatric heart transplants.  Here’s a definition of cardiomyopathy, provided by Cincinnati Children’s Hospital:

Cardiomyopathies are diseases of the heart muscle, also known as the myocardium, in which the actual muscle cells and surrounding tissues are sick.

Cardiomyopathies can be primary, meaning the sickness predominantly involves the heart. They can also be secondary, meaning the sickness is a result of another disease or toxin and may also affect many organ systems within the body, including the heart. Patients with cardiomyopathy will most commonly have a heart with normal anatomy.

If you’d like to learn more about cardiomyopathy, and especially if you’d like an opportunity to ask experienced medical professionals questions about it, then you are invited to come along with me today to partcipate in a LIVE CHAT session with a cardiologist from Cincinnati Children’s Hospital.  The chat begins at 7 P.M. EST, and there are still spots available.  You can RSVP HERE.  Cincinnati Children’s is consistently rated among the top 10 for heart care in the U.S., so it’s impressive that we heart families have the opportunity to pick the brains of some of the world’s best during this chat session.

When It Comes to Miracles, Location Doesn’t Matter

If you happen to follow my other blog, you’ve already heard this story.  But, since it has to do with all kinds of things that I like to focus on within this blog (family, miracles, hospitalizations, etc.), I thought I’d share it here, too.  

A Moving Story

Earlier this week/month (I seem to be losing track of time this summer) I promised more stories about our cross country move.  Well, I already told you that the final preparations were up to me and that we made a stop in Moab, Utah for some quick, quality time with our extended family, and that we arrived safely in our new location.

What I haven’t told you is everything in-between.  I’ll spare you most of the boring details, but I have compiled a list of the  unpictured highlights.  (Unpictured because I was so tired I couldn’t even pick up my camera for the first three days after the moving truck left.)

  • Not knowing when the moving truck was going to be able to deliver our household goods and realizing that our things could possibly be in storage indefinitely, I overestimated the capacity of our Toyota Sienna and small trailer and kept WAY TOO MANY THINGS out of the moving truck.  Thinking I could fit them all into our trailer, I had boxes of food and spices from our kitchen, cleaning supplies, tons of clothing and blankets, and all kinds of other things I didn’t want to part with.  In the end, most of it didn’t fit, and we recreated a scene from our pioneer history by handing out all kinds of freebies to our Indiana neighbors and friends that were there to see us off.
  • Day 1 of driving ended in Kansas City.  A huge thunderstorm/tornado warning chased us into our hotel room, a fitting send-off to our life in the Midwest.  We watched buckets of water pour from the sky.  Ironically, that may have been the last real rainstorm the Midwest has seen since we left.  My apologies, Middle America, for starting your drought.  If you’d like to pay for our family to come back for a few days so you can have some rain and a few tornados, we will oblige.  We like you!
  • Day 2 of driving took us across Kansas and most of Colorado.  Thus fulfilling my vow to “never drive across Kansas again unless it is in a moving truck.”  Well, sort of fulfilling it–I was in a Toyota Sienna towing a trailer.
  • Day 3 took us to the family reunion in Moab, Utah.  After leaving the gorgeous mountains and canyons of Western Colorado, we spent the remainder of the drive peering through the haze of a dust storm.  Seriously.

Like I said, we enjoyed a brief reunion in Moab with most of Bionic Man’s siblings and parents.  The dust storm subsided soon after we arrived, so we were ready to do some sightseeing.  Trouble was, everyone was hungry.  Well, in the aftermath of a dust storm, where do you go to feed a hungry group of 21+ people of varying ages, palates, and budgets in Moab, Utah?  Considering what happened later, I think it is best that I don’t name names.  But I will give you a big hint:

Now, I’m not being a food snob, here.  But I am going to say that there are certain signs the Bionic Man and I have learned to watch for before sitting down at a restaurant that help us decide whether or not we should actually eat there.  The signs weren’t good for this restaurant.  The signs were very bad.  But we were with a big group, we were tired, and we decided not to rock the boat.  I didn’t let my children order anything that would be raw–including fruits or vegetables.  Unfortunately, I did not pay attention to what my husband ordered.

And so it was, after a 24 hour period that included a gorgeous morning hike to the famed Delicate Arch and a last minute decision to drive from Moab to Northern California on a very long stretch of road dubbed, “America’s Loneliest Highway,” that the Bionic Man began to experience some stomach pain.  We were almost to Delta, Utah–one of the towns you likely have never heard of that exists mainly to provide a gas station for The Loneliest Road in America–when the first wave of nausea hit my husband.  He spent an hour in a McDonald’s restroom and declared he’d “gotten it all out of my system” and we headed down the road again, making it to a hotel in the very small town of Ely, Nevada for the night.  But it wasn’t out of his system…and instead of driving to our final destination the next morning, I was driving my very, very ill husband to the pint-sized William B. Ririe Hospital in Ely, Nevada.

Now, I’m no stranger to emergency rooms and hospitalizations.  I’m a veteran when it comes to bedside support.  I’ve learned over the years to be calm and unflappable in the face of catastrophe.  But, oh boy, did I ever feel sorry for my poor husband!  And man alive, was I ever worried about getting medical care from a hospital in the armpit of America.  (We’ve gotten used to some world-class care, thanks to our beloved Riley Hospital.)  And don’t even get me started about what a horrible feeling it was to drive away from THE HOTEL MY CHILDREN WERE STILL IN with their ashen-faced daddy crying like a baby.  (That’s the daddy who was crying in pain, not the mommy, even though she might have felt like it.)

But, you know what?  I was reminded of something that I’ve learned before:  miracles can happen anywhere (even at hospitals that are smaller than our former pediatrician’s office).  The doctors and nurses we worked with were so caring and professional.  Even if it was the first time I’ve ever seen a nurse in cowboy boots, they had the pain medication and IVs that Bionic Man desperately needed.  They quickly located two members of our church who came and gave Bionic Man a blessing of healing, which was a great comfort.  The hotel staff at the Ely La Quinta Inn were so unbelievably caring and helpful, reassuring me that they would do everything they could for our family while I was at the hospital.  Later in the day, when Bionic Man was stable and I brought my children to the park outside the hospital to play, another woman heard me updating family members on my cell phone and came over and asked how she could help.  People in Ely were just so nice to us, and I was so impressed by their kindness to strangers.

Ironically, while Bionic Man was in the hospital recovering from severe dehydration and possible pancreatitis due to food born bacteria (the final diagnosis), the children and I ate the best meals we’d had THE ENTIRE TRIP right there in Ely, Nevada.  The french dip sandwiches made with genuine fire roasted beef were insane at The Silver State Diner, where we had an amazing lunch.

And the only other non-casino restaurant in town, Twin Wok, served the best Chinese meal I’ve had since visiting Chinatown in Los Angelos.  In Ely, Nevada.  Who knew it was such a dining destination?

Thankfully, the Bionic Man made a quick recovery, and after an overnight stay at William B. Ririe, we finished the last leg of our cross-country move.  With the GPS informing us that we had 1 hour, 48 minutes to our destination, we  crested a hill to see this

and it finally hit me:  I get to live here.  Well, not there exactly, but within driving distance.  And suddenly all the stress and worry and crazy cleaning and giving away my spices and even food poisoning seemed worthwhile, if it had brought us to mountains and lakes and incredible vistas that were just a short drive away.  We’ve dreamed of being able to take our children hiking and camping and biking in places like this–not just when we’re on big vacations, but whenever we feel like it.   With the asterisked side note to our dream that it couldn’t be too far from a children’s hospital that would have all the services Superkid needs.  And that dream finally came true.

So, over the course of the next few months when you read me whining about California real estate and how hard it is to downsize and all that, just remind me that I’m living the dream, will ya’?  And that miracles can…and do…happen anywhere.

The End

 And one more thing I have to add:  as much as I hated seeing Bionic Man suffer (he was so pitiful, poor man), it truly was a blessing that he was the only member of the family to get food poisoning.  It certainly would not have been fun for anyone else, but it really had to be him.  Bionic Man doesn’t share my enthusiasm for participating in hospital care, so it’s better that I wasn’t the one needing ER services.  It would have been horrible for any of the children to be as sick as their daddy was, but it could have been absolutely catastrophic for Superkid to have been struck with this food born illness.  Due to her metabolic disorder, Superkid is extremely sensitive to dehydration.  Additionally, we’ve recently learned that she has difficulty metabolizing the type of IV fluids routinely used in hospital settings.  It is unlikely such a small medical facility would have had the specialized fluids she needs on hand.  Treating her for this type of illness would have surely required an emergency medical flight to a larger hospital.  It just makes me shiver to think of everything that could have gone wrong.  I’m so thankful she (and the other children) were spared all of that.  Looks like Bionic Man took one for the team, this time.  Good thing he really is Bionic–he bounced back to full health almost immediately.

Superkid Hikes to Delicate Arch

Hello, Friends!  I know, I know, it’s been forever.  I practically dropped off the blogosphere.  We’ve been very, very busy selling our home, moving across the country, enjoying our new (and beautiful) surroundings, and settling into a new home.  Things have gone well, and the only person to be hospitalized in the last few months was Bionic Man (Superkid’s dad), who suffered from a horrible case of food poisoning (courtesy Denny’s in Moab, Utah–yes, I’m naming names) while we were driving across the country.  That made for a lovely layover in the small by friendly town of Ely, Nevada.

Anyway, recently I have begun chronicling some of Superkids adventures in short videos.  We save these for when she’s just done something that other people might not think a little kid with an artificial heart valve could do.  Climbing steep mountains, hiking to an amazingly scenic vista, running in a race…these are all things that Superkid can do, thanks to her artificial heart valve, the skills of talented medical practioners, and a Heavenly Father who works miracles.  We’re awfully proud of Superkid and her courageous heart.

Enjoy the video that we made while hiking in Arches National Park, earlier this summer. You can’t hear what Superkid is saying due to the high winds, so here’s the interpretation: “I’m eight and I have an artificial heart valve. I hiked all the way here to Delicate Arch, thanks to the doctors and nurses at Riley Hospital. My heart works great! Hooray!”

Superkid Visits Delicate Arch on Vimeo.

Lots of other children, like Superkid, are doing amazing things while living with CHD.  You can read some of their stories HERE.

Just a reminder, I’ve decided to limit the content here at A Trip to *Holland to updates about Superkid and our family’s experiences living with congenital heart defects, metabolic disorders, and grief.  If, in the past, you’ve enjoyed crafts, recipes, and home improvement projects at this site, you can continue to enjoy them at my other site, A House in Holland.

With Superkid currently enjoying a season of good health, posts here at A Trip to Holland may be sporadic.  If you would like an easy way to keep up and/or be notified of new posts, feel free to sign up for an email subscription by clicking HERE.

 

Sunday at Home

Superkid has strep throat.  One of my all-time favorite maladies, I have to admit.  I mean, what could be easier than getting a quick swab, a prescription for antibiotics, and then having your child feel 100% better within less than a day?  (Says the mother who thinks a “good year” is one in which no one has heart surgery.)  I’m a big fan of illnesses that have quick and easy tests and quick and easy cures.  Go strep!

Anyway, Superkid and I are hanging out together while the rest of the family is at church.  We have spent the morning in our jammies, so far.  Now we’re watching inspiring videos.

Just a moment ago, Superkid and I watched this video, and I cried.  Cried happy tears, because I love stories like this.  True stories, about young people who are making fantastic decisions and being good examples.  I want to share it with you.

If you can’t view the video, you can click here to read the article.

Have a wonderful Sunday!

Eat Cookies for CHD Awareness Week

Hi, Everyone!  I’m not sure what the appropriate salutation is during CHD Awareness Week…Happy CHD Week?…Merry Awareness Week?…Froliche Herz?…L’Chaim?

L’Chaim it is!  Which–if you’ve seen Fiddler on the Roof as many times as I have–you know means “to life!”  And promoting life is really what Congenital Heart Defect Awareness Week is all about.

Tricky foreign language salutations aside, I do want to welcome anyone who has stopped by to visit my little piece of Holland, thanks to shout outs from Cassity of Remodelaholic, Casey of Casey Leigh and Courtney of C. Jane, Enjoy It.  You ladies are awesome-and-then-some for taking time out of your busy lives to help spread the word about The Faces of CHD Pinterest Awareness Challenge.

[Read more…]

Hope and Heartbreak

I continue to be thrilled and astonished by the growth of The Faces of CHD.

Click here to learn more about The Faces of CHD.

I try to read every pin that goes onto the board.  It has made for a very emotional few days for me.  The notes from parents and adult survivors that accompany each pin submission are not only enjoyable to read, but often very humbling.  It is a privilege to meet so many who have fought so courageously.

Some of the letters that I read are truly heartbreaking, as I learn of a family’s recent loss.  Losing a child of my own doesn’t make it any easier to hear about the death of another child–knowing the pain of that loss makes it all the more poignant to realize what their family might feeling.  Early on, one mother submitted the story of her child’s brief life with this note, “Is it all right for [my child] to have a pin, even though he’s not a survivor?”

[Read more…]

The Faces of CHD – Pinterest Awareness Challenge

As many of you know, I am the mother of two little girls born with congenital heart defects, known here as Superkid and Lily.  I’m also an avid Pinterest pinner–I love collecting ideas and inspiration via Pinterest.

Those two elements of my life had absolutely nothing in common…until today!  With your help, I’d like to help promote awareness of and advocacy for children (and adults) with congenital heart defects by founding a Pinterest board devoted to sharing the stories of families affect by the #1 Birth Defect.  The board is titled, The Faces of CHD – Congenital Heart Awareness Week Feb 7-12, 2012.” [Read more…]

New Look for a New Year

Have you noticed?  We’re working on a new look here at A Trip to Holland.  That is, I’m working on it.  And working and working and working.  There are still a few bugs.  (Hello?  Where’s my windmill title logo?  Lost in cyberspace?)  But I’m not done with it, yet.

The new decor was inspired by work I’ve been doing on my business blog, Windmill Words.  Over there, I’ve been tweaking the overall look of the site to better compliment my business cards–all in preparation for Altitude Summit, next week.  Seriously, all this work because of BUSINESS CARDS.  What on earth am I thinking?

Here’s a sneak peek at what Windmill Words looks like, now: [Read more…]

What’s On Our Shelf This Christmas?

You may have heard of the Elf on the Shelf.  Perhaps it’s a long standing tradition in your home.

Source

If you haven’t heard of it, you can check out the Elf on the Shelf official website, or check out some fun Elf pictures here.

Well, we don’t have an Elf on the Shelf at our house.  That doesn’t mean our shelves are entirely empty.  Nope, we have something on our shelf.

Brace yourself. [Read more…]