Choice Versus No Choice

Mia Smith, age 6, was born into a physical world that causes her pain and hinders her behavioral and cognitive development.  She was diagnosed with Autism Spectrum Disorder before her 2^nd  birthday.  Some of the initial healthcare Mia received made matters worse though it was seen as therapeutic at the time. 

Mia’s mother, Terra Smith, Puzzle Master and Chief Recovery Officer, works with doctors, therapists, and insurance companies to piece together all the care required for Mia’s recovery.  The tab, thus far, is over $5M dollars.  Mia’s father, Craig Smith, puts in the work hours to make sure the family has a home, food, and clothes.  Terra's Essential Oils business is starting to grow into a consistent income.

One of the primary puzzle pieces Terra deals with is vaccinations.  Forces of “choice versus no choice” amass on opposite sides of this issue, each attracting advocates who fire policy opinions at the other.  Terra discovers that posting an online comment seeking or offering

Hope Comes in Pieces

help elicits a stream of insults and accusations that she doesn’t care about Mia or children like her.  The Smith family gets ten to twenty emails per year, letters from the state, as well as inquiries from insurance companies about Mia’s lack of immunizations. 

Since I co-authored a book on this subject with Terra Smith entitled “Hope Comes In Pieces”, some may see this article as promoting my own business interests.  As long as there is an understanding of how that business interest developed, it’s a fair criticism. 

To my knowledge, none of my three children were adversely affected by immunizations.  My wife and I kept to the requirements and recommendations with few exceptions.  Becoming part of the writing process for Terra’s book gave me another perspective on the immunization issue.  It took one conversation with Terra to understand that Mia’s vaccine story really pivots on two questions– should Mia have been vaccinated after she was born sick? Should her vaccination regimen of twenty-four shots before age two have continued, though she had several infections with fevers? All of this was done under that care of physicians and specialists.

Helping Terra insert those two questions into the contemporary controversy surrounding vaccines and autism may influence this conversation.  That’s how my “business” interest came about– to help a family tell their story because it may prompt a pause in a loud and polarizing argument. I also wanted to partner with them to find other entrepreneurial ways to pay for Mia’s care.

 Guidance from the Center For Disease Control (CDC) points to various “contraindications and precautions” in which vaccines may present a risk if administered.  It even advises parents to consider not giving an inoculation under certain circumstances.  Mia was born Oct 2009 after a difficult pregnancy.  Craig and Terra barely had time for a photo with her before she was placed into special care.  Mia was officially sick at birth. She had jaundice, low oxygen levels of mid-80 percent, and displayed her first allergy after receiving formula.  She received Hepatitis B, treatments, and antibiotics during that twelve-day hospital stay. 

Mia continued to be sick. She suffered from recurring fevers and rashes, nine cases of pneumonia, viral infections, allergic reactions to apple juice, antibiotics, and acid reflux medication.  Her cognitive and behavioral development regressed.  Yet, her vaccinations continued to be administered as recommended.  From the time she was born in 2009 to October 2011, Mia received at least twenty-four immunizations all during a time in which she was sick,with fevers, and under the care of Neo-natal Intensive Care physicians or a pediatrician. 

In contrast, my daughter received twenty-one immunizations over eleven years.  Even after 24 years of military service including a career in healthcare, six doses of the Anthrax vaccines, and other additional vaccines necessary for deployments, I received only ten more immunizations than Mia.

No doubt, some readers may assert that this article still doesn’t support even an anecdotal connection between vaccines and autism.  Okay, but that’s not really the point.  In my opinion, the current path of that argument may not be helpful because it seems to detract from these questions.  Should Mia have been vaccinated initially? Should her vaccination regimen of 24 shots before age two have continued?  To state it differently, does this particular child need to be vaccinated with this vaccine at this particular moment?  Is there a manner of testing a particular child or do we just commit the child to a morbidity risk table and call it good?  Actually, these are the recurring conversations Terra and I had when determining how to develop the chapters that describe Mia’s vaccine story.   

Terra thanks and credits God as responsible for helping Mia progress from an ill child who did not speak or walk, who fell into tantrums for hours, who had problems switching a block from her right hand to her left hand, who broke-out in rashes of which could never be resolved, who suffered nine bouts of pneumonia, who didn’t respond to her name, and rarely went outside. 

Mia still works her way through many challenges but she is much better today. Terra continues to advocate for special needs children and their parents.  She guides them toward resources for grants and biomedical testing which helps parent understand conditions that may be present alongside autism. Her best advice to moms– “Trust your mother’s intuition.  Find a pediatrician who gives weight to your concerns and observations.”  

Thanks to John Newton at La Voz Latina for originally publishing this article in a manner that  let me retain all rights.

Early Intervention, A Blessing for Your Child: Dialogue with Leah Seyoum-Tesfa, RN -Founder and President, REACH Families

“When it comes to autism and other disabilities, parents can have a hard time overcoming a sense of self-shame and social stigma.  This greatly hinders parents in finding proper treatment for their children.”  Leah Seyoum-Tesfa is a Registered Nurse and Founder of REACH Families of Dallas Texas.  REACH Families supports about 80 families throughout the U.S. with autism education and guidance in English, Amharic, and Tigrinya.  The non-profit organization helps parents connect to resources, provides parent education on various topics related to raising children with special needs and empowers parents by teaching advocacy skills. Also, the organization works with the East African communities to bring autism awareness to ensure early identification and intervention for children with developmental disability. Leah’s twin boys were diagnosed with autism just before they turned 3. They will celebrate their 18^th birthday in 2016.

 Leah is of Eritrean heritage but grew up in Ethiopia.  Her family emigrated from their original nation of citizenship, Ethiopia, to Rome Italy in 1980 because of Ethiopia’s conflicts, famine, and military coups.  Leah’s family finally settled in Dallas, Texas, United States when she was sixteen years old. 

Private school in Ethiopia had provided Leah with a reference point to build English skills though she was far from proficient.  After graduating from Skyline High School, she attended Texas Women’s University where she graduated with a Bachelor’s of Nursing Degree.  Additionally, she:

• had completed a certification program and worked as a Women's Health Nurse Practitioner, Obstetrics and Gynecology
• holds a certificate for Leadership Education in Autism and Neurodevelopmental Disabilities

She met and married neurologist, Ganana Tesfa, MD while working at Parkland Memorial Hospital.  Parkland is best known for treating President John F. Kennedy after he was shot by a sniper.

“Even as a healthcare provider, I did not have adequate information on how to care and support my boys when they were diagnosed with autism. I struggled to find resources and appropriate support outside of the school system.  Reach Families came from this desire to provide help that really wasn’t available for me.”

Several things motivated her into getting Reach Families up and running.  This was especially so for the horrible incident in which a parent took the life of their special needs child.  Leah believes that many parents show signs of clearly being mentally overwhelmed when initially given the diagnosis of autism. Caring for a child with autism can also be physically overwhelming  “I felt that lack of support for a mother to help her understand, cope with, and manage her child’s conditions may have been contributing factors in this case. In the immigrant populations, there may have been the additional weight of stigma, guilt or sense of being punished because her child may have been born with or had developed a disability.  Social pressure can reinforce a sense of harsh self-judgement as well.

“Over time, I found out that cases of autism are both under reported and under treated in the East African immigrant communities.  My perception is that parents tend to isolate themselves because of a stigma they may perceive with having a child with a disability.  So, I started going out to churches to break through those perceptions.  I encouraged families to seek help and talk about the needs of their children.  The organization continues to assist families by accompanying them to schools and social agencies to access resources and support needed for themselves as well as their children.  Our message was and still is, Come to us, we can help.  We do not see a stigma or punishment; we see a precious child and family in need.

“The organization  advocates for early intervention as well.  Educate yourself on the developmental milestones and monitor your child’s development.  If you see your child is not meeting the developmental milestones or if your mother’s intuition tells you something is wrong tell your child’s health care provider. Saying something isn’t wishing bad things on your child.  Early intervention is very important in possibly rewiring the brain, changing the developmental trajectory and improving the outcome for your child. I encourage families to continue pray to God if that is what they wish to do.  I strongly believe in prayers and that God uses people to answer our prayers. Early intervention might be the answer to your prayers and a blessing to your child. Get services as soon as possible.”

Southern Scene in Savannah

Southern Scene, a regional TV Show in Savannah, GA, has offered and interview based a submission Terra and I submitted back in early October.

Here is a portion of the letter:
////
Hope Comes in Pieces is a great example of how business relationships have shifted over the years and how they will occur in the future.

• Terra Smith and I worked on the project for a year, only meeting in person last week for the first time
• She was referred to me by a previous client, whom I have never met either

A celebrity endorsement, a strong central figure with an emerging and captivating story, a local tie-in with op-eds in regional and Spanish language papers, the future of business relationships - this sounds like a great story.  I would love to speak with you about it.
////

Persistence, respect for a producer's time demands, and patience were factors in landing the interview. We had some very helpful local advocates as well.

We are working on an interview for Terra with one of the Indiana Stations.  Look for other announcements as the new company stands up in 2016.

Al Hardy

President, HardeRayne 

Media Content, Healthy Living, Advocacy

Proofs for Paperback, Hope Comes in Pieces

But Mia, these are only the proofs. 

Generation Rescue Says and Shows That "You Are Not Alone"

Jason Napolitan

Jason Napolitan is the Operations Director for Generation Rescue.  Jason is responsible for leading the operational functions required to provide resources for families of kids diagnosed with autism.   Process improvement, effective policies – he is responsible for those.  He is involved in brand management as well.  There was some concern about the short distance between my camera phone and these two.  But, I think it captures them pretty well.   

Left: Terra Smith, Author Hope Comes in Pieces  Right: Jason Napolitan, Director of Operations Generation Rescue

Candice McDonald

Below is Candice McDonald, Executive Director, Generation Rescue.  Every time I looked up, no matter what symposium I attended or keynote I listened to, whether I was down in the lobby, sending a text from a quiet nook, she seemed to be breezing  by or talking to a guest or a sponsor or a speaker. She just never stopped for three days… and all with a smile and in a pair of high heels. 

Left: Candice McDonald, Executive Director, Generation Rescue   Right, Terra

Hope Comes in Pieces, Dallas

There's nothing like Starbucks oatmeal in the airport  um.

I'm looking forward to supporting Terra and her mother at the Autism Education Conference in Addison, Texas, outside of Dallas.

Hope Comes in Pieces - Cover

Terra will attend the Autism Education Conference in Addison, TX, Sept 24.  Her goals are to:

1. Find and talk to experts to help with Mia’s allergen-limited diet
2. Join in question and answer sessions with noted and experienced physicians
3. Advocate and collaborate through social media
4. Connect with exhibitors and publishers
5. Find Entrepreneurial ways to help pay for Mia’s care

First Meeting at the Autism Education Conference

A moment just to reflect on what’s coming, to understand and appreciate instead of just prepare…, it hit me this morning, right when I was making another checklist.  Helping Craig, Terra, and Mia Smith bring their family story to print has been eye-opening, encouraging, and emotionally rewarding.  But, I haven’t met any of the people I helped write about.  The upcoming book, Hope Comes in Pieces, came about by referral through someone else I have never met.

Left Frame: Al Hardy - Right Frame: in order from left to right: Craig, Mia, and Terra Smith 

I receive most of my business through Linkedin; only once before has a business relationship that started virtually resulted in a physical meeting and that was incidental.  In 2010, a CEO, based in Chennai, India, had permitted me to use his company’s video to introduce a technology application to hospital personnel.  In Feb 2011, I recognized the CEO from his linkedin photo as he took a front row seat during my presentation an Information Management Conference.

So what’s coming?  First, Terra Smith and her mother will be at the Autism Education Conference, September 25, 2015.  We will meet for the first time after what must be over a hundred hours of phone, text, skype, and email conversations.  This will not be a meet and greet just to say great working with you.  I will be there to documents and support Terra as she:

• finds and talks to experts to help with Mia’s allergen-limited diet
• joins in question and answer sessions with noted and experienced physicians 
• advocates and collaborates through social media
• connects with exhibitors and publishers
• finds Entrepreneurial ways to help pay for Mia’s care

Secondly, the release of a major endorsement for Hope Comes in Pieces is forthcoming.  This is the largest potential exposure I have ever had.  It may be the largest exposure for Terra since her TV commercial for the sitcom Major Dad and pageant ranking when she was a kid.  The endorsement is most significant in the way it is written.  We didn’t tell the endorser anything about the expected feel or reader experience though we were very aware of what we sat out to do.  Honestly, despite having some very good pre-publication reader feedback, despite that the endorsement comes from one of Terra’s existing medical relationships,  I understood what a negative or so-so reply would mean for the project.  Either was absolutely possible.  Thankfully, when we read the endorsement, it reflected our original intent.

Lastly, observing how Terra navigates through the conference will give me valuable insights that I can’t get over the phone, no matter how well I ask questions or listen to inflections or research the subject.  I look forward to it because there are more business initiatives in the works.

So Very Careful, So Very Uninformed

She was so tiny.  Craig and I were so careful to hold her head, to strap her into her special car seat so gingerly, to swaddle her just like she liked it.  All that time, the simple act of feeding her was making her ill.  We had found out that she was allergic to regular formula, which is a story all to itself. But, there was more to it than switching her to formula for sensitive infants.

Nursing was never presented as an option.   I thought it was because of my difficult pregnancy and delivery.  In hindsight, it had more to do with the floor where I was admitted.  It probably wouldn’t have made a difference anyway

So there I was, doing the natural thing, doing the doctor prescribed thing that was all good for Mia only to find out otherwise in the worse sort of way.

A Mother’s Intuition

Mia was a  new born in this picture.  We were happy, concerned, hopeful, scared.  Was I being overly concerned?  Some of the professionals who helped us certainly thought so.  I didn’t really know the value of a mother’s intuition at the time.  Here is what I had to learn pretty quickly:

• A mother’s intuition, vocalized with some good questions, and mixed with a heaping dose of persistence makes all the difference.
• Learn what works and what does not work for your child
• Keep going until you find a physician who  takes the time to hear what you have to say and consider your documentation
• Understanding the connections between the documented results can be better than having Nancy Grace on your side.       

Hope Comes in Pieces – The Story Behind the Story2

In my last blog post, The Story Behind The Story 1, I wrote that Craig and I were destined to find the resource who is helping us with Hope Comes in Pieces. Craig had gotten the lead eight months before telling me.  At first, I got angry only to realize that the matching and timing were just too good to be coincidental. Personality and communication styles are a good match for our family.

The most interesting fact- If I had called him eight months earlier, he would not have been able to accept the project.   I know I would have called the moment I found out.  He would have politely resisted with, “I understand where you are coming from but I can’t.”   He was acting as a ghostwriter on a project while simultaneously working in healthcare technology and finance.

The author our resource worked  with decided not to finish the book though very happy with the work.  He had settled and closed out the project when Craig called on the second day after.

We exchanged some emails.  When I called our resource, we spoke about what I felt we needed. He quickly realized that we needed quit a lot.  I really didn’t go into convince mode.  I just explained our situation.  Basically, his question was, “Will you finish the book, because that’s really important to me?”    

Of course, I said yes.  And here we are, me going through Mia's shot records again as one of final checks.

Writing this book the way we did was painful,therapeutic, and well worth the process..

Hope Comes in Pieces – The Story Behind the Story1

The Brick Wall

The way this book came together is nothing less than meant to be.  For years, people had been telling me to write a book.  Every time I went somewhere and shared our family’s story, I heard the same thing, “You need to write a book!”  Me trying to do just that led to one disappointment after another.

Fall of last year, Craig got home late one night.  He opened his laptop.  I worked on mine as well. He said something like, Here is the guy my boss told me about.  I looked at the linkedin profile.  I got happy.  Craig told me how long he had known about the lead.  Then, I got angry.  He had gotten the referral about eight months before and never told me.  Later, it became clear that his not telling me was part of our being destined to find this resource.  I am to the point that, even if Craig had intended to tell me every day the very moment he came in the front door, something would have distracted him and caused him to forget until the appointed time.

Starting with the end results, after years of frustration and disappointments, in seven months from the reboot, we have a complete, entirely new, and better manuscript.  Other than a few medical record checks, it’s all done.  We do expect some other changes depending how we choose to publish the book.

Furthermore, the new manuscript earned an outstanding endorsement from a very reputable and respected physician.  Next, instead of one book, we are headed toward four books.

More on the next blog, but from Craig’s first contact, it was pretty evident our frustrations were a thing of the past.