Monthly Archives: December 2012

Growing Pains: One Year of Flappiness

 A year ago, I sat on my couch – staring at my computer screen, trying to come up with an original name for a blog.  I don’t remember everything I tried, but I do know just about every domain referencing puzzle pieces is taken.  (I’d like to take the time, on behalf of the autism community, to issue a huge mea culpa to the online jigsaw puzzle industry.  Sorry.)  After giving up on puzzles, I started over with flapping, then flappy, then happy – and Flappiness Is was born. 

I needed an outlet.   I looked at a few autism blogs (quickly realizing special-needs parent blogging wasn’t exactly a new idea).  I noted that most of them had a presence on social media and resolved to do the same.  And then I wrote my first fledgling post.  My goal was simple.  I just wanted to talk to a few people who knew what I was going through. 

And then my world expanded.  I can tell you I never dreamed of the following this blog would attract.  The heartfelt stories of those in the trenches.  Words of wisdom and motherly reassurances from women who’ve already raised their children.  Honest, illuminating, and kind perspectives from self-advocates.  Emails and private messages comparing notes, asking for advice, and saying thank you.  The sharing of tips, advice, resources, information from so many.  I never imagined that this little labor of love would give me so much more in return. 

I’m not the same woman I was one year ago.  My skin is a lot thicker.  I’ve gotten my son formally diagnosed, enrolled him in public school, watched my beloved father pass away, dealt with probate, renovated a house, moved, put my innermost thoughts and feelings on the internet, gone viral, been published in a few places, encountered scathing criticism online, and had a major health scare.  I’m evolving from someone who cared what everybody thought to one who realizes she can’t please them all.  My sense of purpose is growing.  And I’m realizing that I still have dreams of my own that are worth pursuing.

All because of you. 

Yes, this blog has been an extraordinary experience for me.  I still cannot believe that people have been interested in what I’ve had to say over half a million times now.  And I’m so very grateful for it.   I have made amazing friends in this blogging journey.  Wonderful people who have validated my concerns, joys, and even my darkest moments.  Tireless advocates who humble me in their devotion to and efforts on behalf of our cause.  Self-advocates who inspire me to dream big dreams for my son and all those like him. 

Thank you for casting light upon this path, for showing me the surest places to set my feet, and for reaching out to hold my hand.  It’s a good thing to know you’re not alone.

Thank you.

 

 

 

 

7 Tips for Being a Friend to a Special-Needs Parent

Today, I’m honored to be guest posting for WhattoExpect.com.  

Three years ago, I gave birth to a beautiful baby boy we named Callum. He was, and continues to be, a joy to us. But, shortly before he turned a year old, I began to notice the telltale signs of autism. We soon were thrown into the world of developmental therapies, specialists, and ESE. It was a frightening time of worry for his future and adjusting to a reality not quite like the one we had envisioned. And, though we adore him and wouldn’t trade him for the world, his needs have certainly affected every part of our lives. One of the things I wouldn’t have expected it to affect was my friendships. But it did. Some of the people I expected to be there weren’t. And some people I never expected to be there were. Often, I have noticed a hesitation or awkwardness on the part of friends who just don’t know what to say or do. I know they care. And I know they mean well. They are, quite simply, at a loss.

Here is what I would like to say to them and others like them, if they were to ask how to be a friend to a special-needs parent:  Continue Reading…

Dear Superintendent of Schools

Mrs. __________’s Note Home

 

 

 

 

 

 

 

To:  The Superintendent of Schools
Subject:  Mrs. __________’s Note Home
CC:   Mrs. _____________, the School Principal, the Director of ESE, school district administration, all School Board Members
BCC:  Flappiness Is, Facebook, Twitter, the Internet

Dear Superintendent:

Congratulations on your recent election to the office of Superintendent of Schools for our county.

I know that you have been in office just a few days.  And I am positive that right now everyone wants something from you, questions answered, or to elicit your support for their personal concerns.  I am happy to say that I do not need for you to do anything for me.  Well, not at this time anyway.

What I would like to do is draw your attention to one of the 9000 employees of your district.  Her name is Mrs. _____________, and she teaches at ________________ Elementary.   Mrs. ___________ is my son Callum’s teacher. Continue reading at Childswork/Childsplay Blog…

 

 

Dear Morrissey: What Rings True

If you haven’t  seen the story in the news, here’s a little background.  The Duchess of Cambridge (formerly Kate Middleton) entered the hospital with a condition of pregnancy called Hyperemesis Gravidarum.  (I wrote about Hyperemesis just prior to the pregnancy announcement by Prince William and Kate.)  An Australian radio show then decided it would be amusing to prank call the hospital and attempt to get private medical information on the duchess.  They succeeded.  Shortly thereafter, the nurse who they duped committed suicide.   Morrissey, a British musician, decided to weigh in on the media circus with his own opinion. 

Dear Morrissey,

Recently, you made disparaging comments regarding the Duchess of Cambridge’s bout with Hyperemesis Gravidarum and her hospital nurse’s suicide. 

“There is no blame so far placed at Kate Middleton, who was in the hospital, as far as I could see, for absolutely no reason.  She feels no shame about the death of this woman. The arrogance of the British royals is staggering. Does she have a health condition? Is it anorexia or is it pregnancy? So much hoo-ha and then as soon as this woman dies she’s out of hospital? It doesn’t ring true.”

Mr. Morrissey, I am not a “royal watcher”, nor do I have any prior opinion of you whatsoever.  What I am is one of the 1% of women affected by Hyperemesis Gravidarum – a condition you clearly know nothing about.  Yet, despite your obvious ignorance of the subject and your lack of access to the Duchess’ medical records, you have decided to place blame on her for the suicide of a woman she doesn’t know?  Really? 

Since you have not taken the opportunity to educate yourself before this somewhat sad attempt to gain attention, I would like to take a moment to address your commentary.

  1.  Hyperemesis is not anorexia.  Pregnant women of any size can suffer from it.  During both of my pregnancies, I was more than 50 pounds overweight.
  2. Hyperemesis is a “health condition”.  It is not, as you appear to assume, simple morning sickness.  It is an extreme form of nausea and vomiting that causes dehydration and can lead to kidney failure, pulmonary embolism, and even death.  (Charlotte Bronte is thought to have died from the condition.)  It is a condition that, if not able to be eased medically, sometimes requires terminating the pregnancy to save the life of the mother.  That is rare, but it happens.  For that reason (and for the health of both mother and child), it is vital to rehydrate the mother and provide her with intravenous nutrition until she is capable of holding down food. 
  3. A typical hospital stay for an acute case of Hyperemesis is between one to a few days.  It is rare for a woman to be hospitalized for the duration of her pregnancy.  Usually, the hospital puts in an IV and administers and antiemetic (such as Zofran) until the mother is rehydrated and the vomiting under control.  Then she is released.  Often, continuing antiemetic medications is enough to keep her from becoming

    A PICC line

    dehydrated again.  Sometimes, it becomes necessary to administer a PICC line for the remainder of the pregnancy to deliver nutrients and hydration.  To attempt a correlation between the nurse’s death and the Duchess’ release is both ignorant and cruel.  The length of her hospital stay was quite typical for Hyperemesis. 

  4. You denigrate the Duchess for not feeling shame.  Why should she be ashamed for becoming ill?  She didn’t make that phone call.  And, having had the condition myself, I can assure you that she has little opportunity to process the event in between gagging and retching.  How was she supposed to predict such a series of events? Does her celebrity negate her right to hospital care? 

The only arrogance I can see in this situation, Mr. Morrissey, is yours.  Having checked out your biography on Wikipedia, I can find no evidence of your medical training.  And, considering your scathing indictment of the Duchess, I suspect you are not well-acquainted enough to be privy to her personal medical file.  Therefore, I believe the only thing that “doesn’t ring true” is your ill-conceived opinion.  Unfortunately, you have already done some damage.  There are people out there who will read your comments and assume this condition is not real.  Instead of doing good with your celebrity, you have chosen to publicly invalidate an already little-recognized, under-researched, and dangerous medical condition affecting thousands of innocent women and their babies.  I would suggest there are greater uses for your fame than this.

Sincerely,

Flappiness Is

 

Immeasurable Gifts

My beloved Daddy and Callum at his 3rd birthday party.  Taken a few weeks before his passing.

My beloved Daddy and Callum at his 3rd birthday party. Taken a few weeks before his passing.

Today, I am guest posting over at Childswork/Childsplay.  Please visit me there by clicking “Continued”.  🙂

On the day after Thanksgiving, I threw myself into Christmas.  I woke up my husband early and insisted he go and get the tree and ornaments out of storage.  It is our first Christmas in our new home, so I was determined to make it a good one.  It is awfully hard to not have fun decorating with little ones.  I loved every minute of it.

But for all the tree-trimming and elf-on-the-shelf fun, this year it is bittersweet.  It is the first Christmas without my beloved daddy, who died in May.  Daddy loved Christmas.  He was one of those rare people who get the true spirit of the season.  He whistled Christmas tunes everywhere he went and put up tacky decorations everywhere just for the joy of it.  He couldn’t care less about gifts.

Continued…