2012 Midwest Book Awards Announced

Pleased and honored to share exciting news!  Uncommon Beauty won three Midwest Book Awards tonight in the following categories:  Family/Parenting, Health, and Reference.

Thank you Midwest Book Awards for your support of Uncommon Beauty.

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 About.com 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.>>

 Lorna: 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.>>

2013 Favorite New Special Needs Memoir announced

Uncommon Beauty is announced the winner of the 2013 Reader's Choice Award for Favorite New Special Needs Memoir!

I want to thank everyone who voted in the Reader's Choice Awards.

See the announcement on About.com and find many other great resources there for special needs parenting!

Thank you.

Thank you for voting!

Thank you to everyone who voted for Uncommon Beauty in the Reader's Choice Awards sponsored by About.com.

It was an exciting month as votes were cast for many different parenting special needs resources that were chosen as finalists.

Winners in each category will be announced on March 27th.

Be sure to visit Terri Mauro's Parenting Special Needs Children site on About.com for an abundance of information.

Do Super Foods Create Healthy Families?

It could be the record-breaking Blizzard of 2013 along with only fleeting  glimpses of sunlight.  Maybe it’s the barrage of colds and flus that have hit our family of four. Whatever the reason, eight years into this caregiving role and I am still searching for answers to the question – why am I so tired?

Than, in a moment of inspiration I had a vision.  Spinach!  Spinach will energize me.  Yes - and broccoli. Sweet potatoes, blueberries.  That’s it!  I need – my whole families needs – an infusion of Super Foods.  Could super foods create a less tired and healthier family? 

Inspiration turned into my Super Food Infusion Experiment.  I would infuse our days with Super Foods in order to boost my energy and fortify my family’s health.

I made a shopping list, searching the internet for the most promising sounding Super Foods.  Some sounded kid friendly, others would take some creativity: apples, oranges, almonds, broccoli, blueberries, salmon, turkey, leafy green vegetables, sweet potatoes, pumpkin, avocados, whole grains, oatmeal, beans (adzuki were named as best in one article), soy, green tea, yogurt, dark chocolate.  There are MANY more foods that could be added to my list, but this seemed like a great start.

I shopped and my excitement built.  My cart was full of Super Foods and I felt I was really on to something here.  Surely I had the ingredients here to bring renewed energy and boost our immune systems.

The meals began.

1^st meal:  Dinner

The first challenge would be presenting salmon for dinner. My kids haven’t really eaten salmon.  I haven’t really cooked salmon.  I found a kid-friendly salmon recipe that was divine, pleased one of the kids (I think it will grow on the other one) and was EASY.

We had lightly sautéed spinach with a big splash of lemon on the side (which amazingly enough is something that my kids already ask for), whole grain medley, and fruit.  Kids liked it!

2^nd meal:  Oatmeal. 

While the kids weren’t thrilled with oatmeal on the menu, I enticed them with the term:  “Build your own Oatmeal” bar and laid out an assortment of toppings:  chopped almonds (soaked overnight to release more nutrients), apples, strawberries, raisins, brown sugar, and cinnamon (which is also considered a super food). 

The meals continue: turkey and spinach in whole grain wraps; guacamole; green smoothies (spinach, kale, parsley and fruits); spinach and kale salad with leftover salmon; blueberries often; almonds for snacks.

And then providence drops a new book into my hands:  The Sneaky Chef:  Simple Strategies For Hiding Healthy Food in Kids Favorite Meals, by Missy Chase Lapine.  Lapine offers simple recipes that invite the reader to forge ahead and cook with ingredients like sweet potatoes, spinach, and chickpeas.  

With the book in my hands less than 24 hours, I enthusiastically baked the Peanut Butter and Jelly Muffins made with sweet potatoes.  They were a hit. Next on our list:  Strawberry ice cream.

I consider this experiment as in its infancy.  Too soon to really know how it will impact our family.  Here are my thoughts so far:

1. I feel fuller and more satisfied with less food
2. My kids are willing to at least try everything and excited about "Super Foods"
3. I do feel more energized and less tired
4. Cooking and meal planning has become fun and inspired again
5. Still ready for winter to be finished so I can plant my garden full of super foods

Follow me on Pinterest where I am collecting my favorite recipes and inspirations regarding Super Foods.  You can also find me on Twitter and Facebook for other Super Food Infusion Experiment revelations. 

Remember to vote for Uncommon Beauty in the About.com Reader's Choice Awards!

About.com Announces Memoir Finalists - Vote Now!

I have exciting news to share this morning!

About.com has announced the 2013 finalists for Favorite New Special-Needs Memoir in their 2013 Reader's Choice Awards.  

Uncommon Beauty:  Crisis Parenting from Day One has been included as one of the five finalists!  Thank you to About.com for including Uncommon Beauty among your finalists.


The announcement reads, "The five finalists for Favorite New Special-Needs Memoir for the About.com Readers' Choice Awards tell stories about life with Asperger syndrome, autism, behavioral issues, and special healthcare needs.  With faith, humor, and hope, they provide encouragement and insight for those facing the same challenges."

For me personally, this is an opportunity to increase awareness of the issues surrounding Apert Syndrome and the families who care for children with special healthcare needs.

You can vote once a day every day between now and March 19.  Winners will be announced on March 27.

Go here to vote today:  About.com Favorite New Special-Needs Memoir

Tauri Mauro's Parenting Children with Special Needs Forum on About.com offers an abundance of resources.  I hope that you will visit her site to learn more and vote daily.

Other categories include:  

• Favorite Special-Needs Parenting Blog
• Favorite Special-Needs Online Community
• Favorite New Special-Needs Parenting Book
• Favorite New Special-Needs Children's Book
• Favorite Special-Needs Twitter Feed
• Favorite Special-Needs App
• Favorite Special-Needs Regional Resource

Congratulations to all the finalists this year.

Uncommon Beauty selected for Top Twenty List

Uncommon Beauty:  Crisis Parenting From Day One was recently named as one of the Top 20 Books on Parenting or Teaching Children with Special Needs Reviewed by Special Needs Book Review (January 2, 2013).

Visit the Special Needs Book Review website to see the review and find other great books on parenting and teaching children with special Needs.

Creative Inspirations

Creative inspirations come from so many sources: nature, a beautiful day, curiosity, making our home into a sanctuary, the humdrum of everyday life, or extreme challenges.  All it takes is one thought that calls out to us, beckoning us to pour our soul into something creative.  That process of creating can bring meaning to our lives that makes the difference between just getting by and living largely.

For individuals with special needs, the challenges that they face can be the seed that grows great creative inspiration (for their parents too).

Like the visual diary that I am creating with my colored pencils. It is a place where I can draw something beautiful that reflects the day’s experiences, record an inspiration, explore my feelings, or write poetry.  Whatever I feel compelled to set down on paper with colored pencils goes in there.  I draw whatever is truly important to me and this keeps me centered and brings me joy.

Evan’s physical limitations have propelled him to become a master of creativity.  If one way of doing something doesn’t work, he finds another.  If someone doesn’t understand a word he is saying, he finds other words that are similar but easier to decipher within his speech patterns.  If he is full of joy he will burst into song, composing a mini musical expressing all that is happy in his heart.

Scott Menzel, visual artist,  www.visualantearts.com says this about his creations,

“I want to rock and shock the world with bold visual poetry.

Art is something hard to explain but it exists and has a power.  I believe my passion to create is the driving force to move myself through life.   It allows me to express how I feel and gives me a sense of accomplishment.  It is my method to prove my self worth when things seem over whelming and it helps achieve the peace within myself in a world that can seem complicated.

My art signifies my inner feelings, struggles, and dreams.  Each creation is a fragment of this journey of answers.”

Evan and I (along with a friend and her daughter who also has craniofacial differences) met Scott at a Fall Festival.  Scott’s assistant (I later found out she is Scott's mom) called out to us as we passed his booth of vibrant artwork, “Scott would like to give each of your kids a piece of artwork.”  The kids turned and ran to him, excited to be receiving an unexpected gift.  They ran to Scott, sitting behind the display in his wheelchair, and each child reached up and touched his hand to thank him.  Scott smiled back kindly, connected to these special children through common struggles.  The kids eagerly picked out their art and each found a special place for their masterpiece in their home.

Creative art has the power to transcend struggles, to connect us to new people, and to discover new found energy.

Follow your creative sparks and let them energize you. Make a visual diary, sing a new song, paint a picture, do something new with a corner of your home that is calling out to you.  For powerful artistic and life inspiration, visit Scott Menzel’s website now.  Thank you Scott for inspiring us one warm day last fall and for the gift of art.

Book Review - Different Dream Parenting

Recently I have had the pleasure of discovering two beautiful books about parenting children with special needs.  These two books, Different Dream Parenting and A Different Dream for My Child, offer reassurance, comfort, and practical information. The author, Jolene Philo, utilized her experiences as a special needs teacher, as a parent caring for a child with special healthcare needs, and as a person filled with faith to create two powerful guides. 

In creating my own book, Uncommon Beauty:  Crisis Parenting From Day One, I focused on the first year of dealing with a healthcare crisis.  However Philo’s books take the reader from unexpected complications at birth all the way to addressing issues of adult independence.  Throughout the journey Philo encourages parents to rely on their faith, offering inspirational quotes and reflections.

Calming Rhythms

We rely on music to soothe our family’s souls.  I guess that's only natural considering we're musicians.

From making music to listening to music, we fill our house with great tunes.

Upbeat music stirs us into a joyous celebration (think Salsa).  Soft classical music comforts Evan after surgery.  Kenny Logins sings the children to sleep.  Relaxing Greek Isles (an easy listening/relaxing CD) can settle an agitated atmosphere in the house faster than anything else.  

My single most treasured album that inspires me to move into action when I don’t have an ounce of ambition is Acoustic Garden featuring Tingstad and Rumbel.  This upbeat yet comforting soundtrack always resets my energy.

Recently I have added a new genre of music to our repertoire:  Music Entrainment Therapy.  I discovered the Strong Institute website, a company formed out of research, which creates musical soundtracks called Rhythmic Entrainment Intervention (REI).  This has been a significant find for me.

The idea behind Music Entrainment Therapy is to take the listener from one energy level or emotional state to another, using gradually changing music (rhythms, tempos, volume, timber).  An interesting description of music therapy can be found at the Free Dictionary.com.  Especially interesting is the description of the effects music has on the human body, including:  brain function, breathing, heart, blood pressure, muscle tension, endorphins, and stress hormones.

While I found the Strong Institute and REI hoping it would help my kids, I am surprised to be relying on it for myself.  If I am having a moment when I just have had too much, I’m overwhelmed or just can’t find my inner place of calm, I play the Calming Rhythms CD and without fail, I feel calmer.

The only endorsement I can share is my own experience.  I can say that in atleast one instance, it helped one of my kids recover from an emotional melt down.  Putting this therapy into action daily for the kids or just figuring out how to use it with them regularly, is still a work in progress.

I would love to hear comments from anyone else who has tried REI.  You can download a free sample to experience REI it for yourself at the Strong Institute website homepage.  Please note that the Strong Institute advises that these soundtracks are played softly, just loud enough to first hear it.  The brain is able to take in the sound and benefit from it at these low volumes.

Parenting Lessons Lived and Learned

You are invited to join the discussion Saturday, January 19th.

Parenting Lessons Lived and Learned:  A Program for Parents/Caregivers of Children with Special Needs