Sunday, May 5, 2013

Author Interview with Special Needs Book Review

Thank you to the Special Needs Book Review for featuring this interview!

Interview Margaret Meder:  Special Needs Parenting - Advice and Inspiration

Being a parent is a great responsibility. Parenting a healthy child is exhilarating, exhausting, and at times exasperating. Do you know what it is like caring for a medically fragile child? Most of us cannot even imagine what special needs parenting entails. I now have a better understanding of the strength it takes after reading this remarkable book, UNCOMMON beauty – Crisis Parenting From Day One by author-mom Margaret Meder. My review of her book is here. We are so happy to add Margaret Meder to ourAuthor Interview Series!  
Congratulations to Margaret Meder! Uncommon Beauty is the winner of the  2013 Readers’ Choice Awards on Parenting Special Needs

Lorna: Congratulations on this beautifully written book on special needs parenting! I am certain ALL parents of children with special needs will benefit from your practical advice and all readers will appreciate your inspirational, personal story.  Please tell us a little about your life and work before becoming a mother. Did anything prepare you for being a mom to a medically fragile child?
<<Margaret Meder: Thank you for inviting me to the Author Interview Series.  I’m honored to participate.
Since a young child I have spent many hours at the piano playing and singing all kinds of music.  It has been a constant part of my life for as long as I can remember.  My early adulthood was spent immersed in becoming a music educator.  I attended the University of Wisconsin – Madison where I studied voice, piano, and education.    After college I spent the next 12 years teaching K-8 general music.  It was during this time in my life when I developed so many of the skills that I have needed as a parent of a medically fragile child.
To begin with, teaching music is strenuous work.  I was on my feet performing music, leading young musicians, and creating excitement for learning for up to 12 classes a day.  After the teaching day was finished I would put in several hours planning for the next day.  In addition, I also had outside musical interests of my own that I continued to pursue and which required it’s own practice and rehearsal times.  Being a musician is physically demanding work.
Parenting a medically fragile child is also strenuous and physically demanding work.  It is a constant putting forth of energy to provide the caregiving – lifting, continual monitoring of needs, staying awake hours on end), vigilance, and cheerleading.  It means surviving long days of all kinds of logistical work creating treatment plans, scheduling all the necessary therapies, organizing paperwork, going to doctors appointments, enduring surgeries.
In many ways, to be a teacher is to be a master of communication.  Communication is such a vital skill in all that I do to advocate for Evan.
With a teacher’s perspective, I see myself as a student and each new experience as a lesson. I discover problems to be solved, gather information, study the options, make choices, evaluate outcomes, think about what could be done better next time.  Also, I hold onto the truth that I am a beginner at all of this, but each day I am a little farther along in this real life education.>>
Lorna: I had not heard of Apert syndrome before reading your book. Tell us about it and how Evan, your son, is doing. How prevalent is it?
<<Margaret Meder: Apert Syndrome is a rare craniofacial syndrome, affecting  approximately 1 in 160,000 births.  This genetic syndrome causes skeletal abnormalities, including:  premature fusing of sutures in the skull, wide-set and protruding eyes, sunken mid-face, fused fingers and toes (with joints missing and no ability to bend).  A wide range of other conditions can be present.  For Evan this also includes hydrocephalus, an Arnold Chiari Malformation, a curved spine, fusion of neck vertebrae, abnormal shoulder bones, respiratory issues, digestive issues, moderate hearing loss, and impaired vision.
Despite all of the physical challenges that Evan faces, he is doing remarkably well.  Evan is an outgoing child who is talking, walking, and eager to play with anyone who will join in.  He is integrated into a 2nd grade classroom, with considerable assistance from the special education department.  Evan is beginning to read independently, motivated by the challenge of being able to read a chapter book.  Evan is my ambassador of joy.  He never misses an opportunity to do something fun.
In May Evan will undergo his 7th big surgery:  the Mid-face Advancement.  Evan’s sunken mid-face will be corrected through surgery and wearing a surgically placed halo device for 2 months.  We hope this surgery will take away his night time apnea and make breathing easier all around.  Also, the surgery will erase much of the Apert look from his face.>>
Lorna: I read you set out to write the book you longed for when Evan was born. That you had to learn about parenting a child with complicated medical needs through experience and research. You wanted to make the journey of similar parents easier. When someone says, “What is your book about?” What do you answer?
<<Margaret Meder: Many people think this is a book about Evan.  Really it’s not about Evan.  It’s a book about the lessons I learned caring for Evan.  From the day Evan was born I had this feeling that each experience was a lesson that I would learn from.  At the same time I was frustrated by the thought, “I know that lots of other parents have already learned this lesson.  Why am I always starting from square one and painstakingly putting the pieces together when this has been done before? Why isn’t there a book with some of these tips in it?”  Originally, as I began to write a guidebook with tips, I set out to keep it a no-nonsense, non-emotional, concise book of straightforward tips.  But I realized, at the urging of several first round readers, that the lessons were incomplete without my emotional experiences.  In the hope of also validating other parent’s emotions and giving a framework as to why each tip is important, I added in journal entries which reveal my inner most thoughts.  This was the truly difficult part.  In order to survive, I had hidden away most of my emotions from myself.  Revisiting my notes and memories brought back a flood of suppressed emotions.>>
 Lorna: Looking back at the first year of Evan’s life, what are the highs and lows that stand out? Is there anything you would do differently in hindsight?
<<Margaret Meder: The day Evan was born and the realization that our lives would be forever changed will always stand out in my mind as the hardest day in my entire life.  Other moments that are heavy in my heart include singing to Evan in the NICU – desperate because I couldn’t touch him, long days hospital rooms, watching Evan struggle to breath, sending him off to surgery.  Other moments that were high points include washing and feeding him for the first times, his first smiles, watching nurses who couldn’t resist touching his thick hair and nudging his adorable pudgy cheeks, the support of loved ones, and the relief we felt every time he came home from a surgery or hospital stay.>>
Lorna: Your life was changed in ways you never could have imagined! Does it ever get easier? What are strategies overwhelmed parents can use to be able to care for themselves so they can continue to be strong enough to do what is required for those who rely on them?
<<Margaret Meder: It does get easier.  Every day is easier than the last.  However, it still takes me by surprise that I have more “hard days” than I expected.
Finding strategies to manage the hard days (which seem so out of sink with life, my plans and intentions) is my current mission.  The hardest part about this life is accepting that the calm days can be fleeting.  And the centered emotions that flow with calm days are fleeting:  having stability, enjoying good health, feeling rested, finishing a round of appointments and surgeries.  There is a constantly changing ebb and flow to our lives, moving between crisis and moments of peaceful flourishing.  Managing this ebb and flow  is what can be overwhelming.
A friend who also has a medically fragile child pointed out something to me that I had experienced, but hadn’t realized or put much thought into.  It is the moment when the crisis is over, when we are trying to turn our focus back to where we were before the crisis, that can be the hardest moment. In the crisis there is focus.  In the recovery, there is an uncertainty and overwhelming sense of, what now?
The single most important strategy I can recommend is to be gentle with yourself.  Find time (whatever it takes, find time) to take frequent rests and breath.  Finding a big block of time to do this is challenging, but take 60 seconds to clear your mind, breath, and rest.  Use positive self talk and always remember that your priorities are your immediate focus:  your children, your partner, yourself, your home.  Everything else can wait.>>
Lorna: You have a child older than Evan. What has the last years been for him? What can parents do for the sibling of a child with special needs?
<<Margaret Meder: I pass along the advice that was given to me, children are resilient.  They adapt to whatever is normal in their life.  If having a medically fragile siblings is normal in their life, they will flourish within that setting.
I find that Jonathan, Evan’s older brother, has become an amazing human being based on his experiences.  He is kind, helpful, empathetic, and wise beyond his years.  He has such a big heart and such a strong belief system.
I have provided babysitters for Jonathan that gave him his own special time.  Also, family and friends have been very thoughtful in remembering Jonathan and providing special experiences for him.
His Dad and I try as much as possible to spend time alone with him – playing cards, going out for ice cream, playing outside, watching a movie.  This one on one time is really important to him.>>
Lorna: Family members and friends of parents in a crisis sometimes do not know what to say or do to be helpful. What suggestions can you give them?
<<Margaret Meder: This life is harder than we will ever tell our friends and family members.   If all we ever do is talk about our challenges, then that is our only reality.  Also, we are acutely aware of “listener’s fatigue” and feel that the less said is better.  We try as much as possible to carry on – to live life as if we have no challenges.
Every kind word is held in our hearts and revisited.  Your notes give us strength to keep going.
Words like, “I see what a great job you are doing” encourage us to keep going;  “I am thinking of you” remind us that we have friends; “I am looking forward to visiting” give us hope for carefree times in the future; “I am on my way there” confirm that we are not alone.
We are tired of asking for help, but continue to appreciate every random act of kindness.  Everything you do to help us is appreciated tenfold.
I would suggest to friends and family who want to help, offer concrete suggestions.  “Want to go out for coffee?  My time is yours.  You can talk about your child’s condition or anything else.  Or I’ll talk and distract you.  You choose.”   If you are able to do something special with the siblings of a sick child, you are like an angel to us.  Or if you wish you could do more to help, offer to bring over a meal or just come and sit with our child so we can take a moment to breath (even 20 minutes is helpful).  If parents are traveling for medical treatment, send gift cards for gas or food.>>
 UNCOMMON beauty – Crisis Parenting From Day One by author-mom Margaret MederLorna: Your book has surely made an impression on me. It is one of those books you dread turning the last page because you want to know more. Have you thought of a second book? What is on Margaret Meder’s To-Do-List for the coming years? Please give us your links to follow you. We at Special Needs Book Review thank you very much for your interview.
<<Margaret Meder: I appreciate your kind words very much and I am deeply touched to know you enjoyed reading my book.  I do continue to write.  I continue to write my blog “Marg’s Memos” about “Inspirations, Reflections, and Affirmations for Special Needs Parenting”
As I mentioned earlier, I am writing about discovering how to manage the constant ebb and flow of life while caregiving for a child on a long-term basis.  This topic is the basis of the public speaking that I do and I see it evolving into some type of article or book.
I’m discovering a real need for knowledge in ways to continue education learning at home, especially in cases where children are home for extended times with medical needs.  As I collect strategies here, I imagine putting together some type of educational resource.
Off topic, but one of my favorite genres of literature, is historical fiction.  I have an on-going project about life in the early 1900s in rural Wisconsin.  It’s a long term project that has a life of it’s own.
I do love writing and find it’s the creative outlet that I need in my unpredictable yet uncommonly beautiful life.>>

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