Sunday, March 26, 2006

Singin the Praises of Music Therapy!

Here's a question for you to get your brains in gear!

What does my first official book signing and a terrific rock band propelled by teenagers with special needs and great chops have to do with today's rambling?

Lots! -and then some! I spent much of my Saturday at a multi-state conference for music therapists and college students hoping to join their ranks. During lunch, some remarkable musicians with special needs performed for an enthusiastic crowd. The band included a Joan-Jett-like singer who put Bucky from the current season of American Idol to shame. Talk about being inspired, and focusing on abilty -wow!

Until the conference, I had alsolutely no idea what I was going to rant about this week. I was already past due per my deadline-driven mind, so I had to remind myself loudly that I am the only one calling the terms on this blogging gig! The months (years) of non-stop writing to realize the publication of Breakthrough Parenting for Children with Special Needs, and far too much solitude, had left me craving a little break in the writing department (and with a JLO-imposter behind!). Lately, I've been experiencing a little bit of the dreaded writer's block, but I know it will pass eventually-- as will the behind with a bit of work.

The fact that I am now an author who has climbed the big publishing mountain and jumped all the hoops required to see my book on bookstore shelves (then turned out impressive promotion materials in short order), meant nothing as I faced the empty page. Procrastination hadn't magically disappeared from my writer's vocabulary simply because my name and face were now on a book (although being called an author sure does soothe the blank mind and tender ego and make you feel a bit like a rockstar)!

In reality, I was tired of writing and I wanted to go do something else for a change, like shop for new shoes, go have a beer with friends (and I don't even drink beer!), or watch Under the Tuscan Sun and sigh. I was acting like a spoiled child who wanted her own way again. My approach clearly wasn't working (ya hear me, Dr. Phil??).

Oh, there was no shortage of topics to rant about this week -like the dad who in his rush to board his commuter train to Washington D.C. left his seven-month-old child in the car at the train station (there aren't enough words)! Then there was the media flap over an alleged Nicole Richie social faux paux (wasn't she raised in priviledge -or is this real problem?). This event involved uttering a suggestive profanity inappropriately toward an unsuspecting young boy (is it really that tough to figure out basic right and wrong in today's world, especially where young children are involved?). Or are all societal boundaries now up for grabs? I sure hope not.

When I read that the boy's father had refused to sign a release to air the tasteless interchange, it gave me renewed faith in parenting and I found myself shouting out kudos at the computer screen- You Go Dad!! I gave him five stars for taking his role as parent seriously, a too rare occurrance in today's media-obsessed, pop-culture, I wanna be your friend, not your parent and our you-can-just-change-the-channel world! The continued dumbing down of society as modeled expertly by what is supposed to be our future leaders (and what should be our best and brightest young people), who also happen to be pretty big role models for our youngest, is a reality that infuriates me and leaves me with far too many questions for which I have no answers (although I usually try to fake 'em).

But here's one answer: Parents: teach your kids the basics of being decent human beings, okay?? Things like the simple concept of basic right and wrong, and good manners and issues involving self respect and human dignity (and tell them stories about all their ancestors who fought so relentlessly for our basic civil rights, causes many people must still fight for today). But I digress, and this topic is definately for another blog, another day. So let's return to today's topic, shall we?

As usual, this week there was no shortage of shake-your-head life moments to choose from. Yet, somehow I wanted to use my forum for something more news worthy, more human, more life altering. I wanted to share information that could help change kids lives.

So here you go, two simple words -and they aren't profane. Music Therapy.

Research strongly suggests that music therapy holds the power to impact the brain and development in positive ways, especially for those with a wide range of special needs.

All of us have a story about how music has impacted our lives in powerful ways, right?

But it is what I saw music and music therapy do for my son who had cerebral palsy that first sold me on this profession, and made me a true believer in the power of music. Eric took part in the remarkable program for seven years, before passing away suddenly in 2003 at age 12. Because of this profession, my son's talent for music was both uncovered and nutured, and Eric was composing music before he died. Music added such richness and purpose to my son's life, and to his development. Eric had a significant disability, but he was a musician and a kid first.

In my short list of programs that I believe are a must for many children with special needs, music therapy is right up there. So when asked to present for this conference, and hold a book signing, I readily and enthusiastically agreed. I wanted to say thanks by presenting a session that highlighted the human results of the work these professionals do each day, as I told my son's amazing story. I also wanted and needed to take in the smells and sounds of an event that I knew would remind me of my son's life and face and laughter. And that's exactly what I savored -and more.

The Great Lakes Region of the American Music Therapy Association annual conference was hosting nearly 300 professionals and music therapy students who were networking and sharing individual expertise in order to help clients with special needs make important life gains, no matter how small, no matter the tough challenges presented. Many were committed to improving the lives of those with autism. The heart and passion of so many in attendance was contagious and inspiring and gave me hope for the future of our kids.

It was one of those events where the actions of people who are trying hard to make a difference in the world left me asking this question: what would happen if all the people who misuse their privilege and education and money were to instead turn their focus from frivolity and self-centered pursuits of fleeting happiness and easy fame to those efforts that best used their energy and smarts for the good of others? Imagine the power we could harness to change the world, or at least a small piece of it. Imagine what we could do for those needing our support?Altruistic, maybe. So what? I've seen the results of such focus. They are often magical.

Traffic at my table was brisk as each book purchaser readily shared a story about the work they do each and every day. So many thanked me for writing the book to help families. More than one said they were buying it to pass on to a parent in dire need. I thanked them all for their commitment to their clients, while also reminding them of the importance of reading it themselves first. We each have much to learn from one another.

One of my biggest missions with this book is to help parents and professionals work together more productively, and with less grief. We must model increasingly positive, respectful teamwork if our children are to thrive. In this place, on this day, I experienced the role of these outstanding professionals as my comrades, teammates to be embraced and celebrated, not as an enemy to be avoided whenever possible. That misguided perception of the title 'professional' is held by too many parents. As is the often inappropriate definition of 'parent' by the professional ranks. We both play a role in this unfortunate interchange, and it must change.

Saturday's experience left me with a renewed commitment to bring what are often opposing sides together in positive, respectful, caring ways that can help change children's lives for good. I am passionate about this work. It must be done if all children are to live better lives, period. No more excuses from the adults in their world for giving them anything less.

Music holds the power to transform all of our lives. It was true for my son; it is true for me; and at Saturday's conference, it was true for all those in attendance. As a writer, I sing with words. These professionals sing with great heart for a population that is too often undervalued and misunderstood. I applaud their work, their passion and their commitment. I applaud them. Like a parent trying to work through the roughest parenting patch to create a better world for their children with disabilities, the work of these music professionals is not always easy.

Truth be told, few programs can cause me to shout to the heavens about the incredible promise they hold for kids with special needs. Last Saturday, I was again reminded of why I love music therapy, and while no one profession can offer a panacea treatment for children with special needs or their families, this one sure comes close.

Tell someone you know and love about music therapy this week. It may just change a child's life -and your own.

Wouldn't that be grand??

Friday, March 17, 2006

Advocacy & Ability

As promised, here's the second entry to my new blog and my topics today include: Dana Reeve and BB King. This entry is being made a bit later than I had originally planned because the demands of new authordom have kept me slightly busy, but enjoying almost every second.

I can't even begin to put into words what it meant to me to see my book Breakthrough Parenting for Children with Special Needs: Raising the Bar of Expectations, with son's face commanding attention front and center in the parenting section at Barnes and Noble. There it was on the top shelf, face out, under Children with Special Needs, in a major bookstore located across from a major university that houses one of the premier programs for educating future teachers in the country. Wow, that's no small impact on an author/parent/advocate!

I assure you that I am rarely a person of few words, something to which my adoring, tolerant husband can certainly attest (probably quite loudly), but seeing Eric's incredible, smiling face enticing the young and the old, the browsers and the eager, wide-eyed, and sleep-deprived parents, as well as the discriminating book buyer was one amazing moment. I stood there staring at it for so long that I'm quite sure someone was worried about my possible intentions (was I about to walk out with the latest autism title in my purse? Not likely). I'm still digesting this life-defining moment... chances are good I'll blog more about on another day, but not quite yet...

As I took the elevater to the street level and floated out into the crisp night air, I couldn't help but whisper discreetly to my level-headed accountant husband, "Do you think anyone in the bookstore recognized me?! His have-you-completely-lost-your-mind? glance back quickly brought me back to earth with a great big fat painful thud.

There is absolutely no chance of me becoming a diva in my own household--zero, nada, no way, no matter how loudly I proclaim just how tough it is to get published through the old-fashioned literary means (by that I mean not by self publishing)! Like Rodney Dangerfield, I'm having trouble getting some props here among my immediate family possee...

Overall, this was still a remarkable evening, one that also included attending a terrific concert with BB King, part of the 80th Birthday tour by the legendary King of the Blues. My spouse is a great fan; I was less so, until last night. The man is simply amazing, as is his band, many of whom have played with BB for nearly 30 years! He can't move as fast and, in his own words, 'he's got bad knees, can't see so good and has diabetes, but he can still work his one good eye overtime to check out all the pretty ladies!' He may be eighty, but his pure talent has lost none of its youthful edge.

BB King was funny, charming, engaging, belting out the blues like a Sunday preacher frantically trying to save more than a few ragged souls- and as if his livelihood, and his alimony and child support payments, depended upon it. As I listened to the words of this singer/songwriter/poet/guitarist extraordinairre, I realized that BB King has lived through civil rights, the assasination of the Kennedy brothers, and Martin Luther King, and many other dramatic, defining times in our nation's history, but his youthful spark still commands attention, as does his love for his music and his enormous musical talent.

When King relayed the stark reality of being denied the right to play at this kind of fancy venue with such a grand stage years ago, I was reminded of the struggles still facing many minorities groups in 2006, including for those with special needs.

In that moment, I recalled my son's special needs journey and the value of what we now share with other families and the world through Breakthrough Parenting...and I fought back stinging tears of unresolved emotion from years of my own frustration at advocating for my son in a world that still has trouble seeing the value of a child with special needs. Music moves us in such powerful ways.

I remembered the time we took Eric to see BB King on a sultry summer night at Interlochen in Northern Michigan, where Eric's love for the guitar became incredibly evident, even as the draining 90 degree heat took its toll on him. As he sat in that confining wheelchair, sweat running through his hair, Eric's beaming smile said it all--the guitar, the music, and BB King, were way beyond cool!

BB King may be 80 years old, but he is still a young musician at heart. He loves what he does and exhibits a passion and gift for living life fully. It's an example to all of us about how to go on living, no matter what heavy bolders might get tossed in your face on this often unpredictable life journey.

I discovered a renewed respect for my son and his own love and talent for music that night-- Eric was one was cool dude, too!

Which brings me to the final entry of this day, Dana Reeve. With the death of this remarkable women a little more than a week old, this week's media if filled with photos of her life and tributes to her amazing legacy. I want to add my own words to the mix, short and sweet and with my respect for this amazing woman.

I didn't know Dana Reeve as well as many, yet probably knew her a bit better than many others because of an in-depth interview I conducted with her for my book shortly before Dana's lung cancer diagnosis was announced. It was my honor to include this mom/caregiver/singer/friend and advocate in the final chapter of my book, along with an interview with Timothy Shriver of Special Olympics because of what I (and others) view as their signficant efforts contributions to the increased awareness of and life opportunities for millions of people worldwide with special needs. I hope that each and every one of their words of wisdom and fire and spunk will inspire millions of families and others to create better lives for kids with special needs.

Dana Reeve was one of those rare human beings who leaves a nation of fans mourning her death, along with a remarkable legacy from which we can all learn, much like her husband's. So my response to this enormous loss for the special needs community, and the world, is a bit of a battle cry for those of us left to solider on. All of us who care deeply about what Dana Reeve stood for and for the cause and population she and Christopher Reeve served with such passion and grace and commitment while facing tremendous family challenges, must continue the work that they, and others in the human rights field, began. We must go forward, as Christopher Reeve said shortly before his death, and his wife after he left us. And go forward we shall. We owe these two remarkable human beings at least that much.

You can help continue the tireless work of the Christopher Reeve Foundation and the Paralysis Resource Center (Dana Reeve's baby & an invaluable resource that recently lost its federal funding) at One person CAN make a difference in this world, even under the toughest of circumstances. Dana Reeve and her husband proved that to the world, and so much more.

Now go hug your children! And make it a week filled with purpose and passion and actions of advocacy for the things in life that really matter, and speak up for all those other voices who too often remain silent. And remember to show a child that you care deeply about his or her future every day of his or her life. 'Cause they're our future.

Powerful thought, huh?

Wednesday, March 08, 2006

Intro to my Blog

If you would have told me a few months ago that I would be excited about beginning a blog, I would have said that you had clearly lost your mind. But the reality is that I haven’t been this excited about a new technology baby since I first got dragged kicking and screaming from an electric typewriter to a computer. That ground-breaking event immediately cut years (and mucho stress) off my obsessive editing process, a fact that my husband reminds me of often (C.P.A.s love technology!). That success left me game for trying new advances before they became really old advances! Guess you can teach an old puppy....

So now I am proclaiming Long Live the Blog!— within reason of course.

Let’s start this whole writing adventure off with three fairly simple questions?

Who the heck am I? And why on earth would I blog? What is the purpose of this blog?

First, I am the author of Breakthrough Parenting for Children with Special Needs: Raising the Bar of Expectations which has just been released by Jossey-Bass/Wiley (March 2006)).

I am also an award-winning journalist, speaker and advocate on special needs issues. I’ve been writing on this subject since 1990 after my second child was born and diagnosed with cerebral palsy. My book is dedicated to my remarkable life experiences with my son, Eric Winter, who passed away in 2003 at age 12. It was my challenging and incredibly rewarding life with Eric that led me to become passionate about improving the lives of children with special needs. There is a lot of work to be done…

So why blog?

Why not blog? It gives me a terrific opportunity to continue to share my thoughts on special needs— and I have many unexpressed thoughts on that subject (plus, my publisher thinks it’s a good idea!). I’ll explore a few other interesting daily life experiences with readers of my work and my fans (IF I have any), including the road to publication. I couldn’t fit everything in my book, so blogging will help fulfill my need to ramble on a wide range of subjects, something that has made me a pretty good columnist— a perfect venue for someone who always has an opinion to share, especially on subjects that far too few of us really want to talk about, like disability, grief and faith. I aim to help enlighten and inform and create much-needed discussion about some tough life issues, especially as it involves special needs.

I take the power of this forum seriously. You won’t catch me ranting on about what I had for dinner, the jerk that cut me off in traffic, or whether Madonna should have kissed Britney on live television (wasn’t my favorite TV moment). I want to comment about those things with the power to foster important and valuable societal change, especially as it relates to creating better lives for children with special needs— I am a champion of the underdog and darn proud of it.

The purpose of this blog can be summed up in three simple letters of the alphabet: IEP.

To those entrenched in the special needs world, IEP stands for an Individualized Education Program— three words that hold remarkable power to freak out a lot of parents and professionals. But I’m adding a new definition to IEP, aiming to make it more user-friendly: I vote for Increasingly Empowered Parent, Professional, or Person. This blog will explore exactly what that means and how we can each achieve it.

Fact is, I’m on a mission to improve the lives of those with special needs. But as determined and committed as I am to the cause, I can’t do it alone. This world need many more empowered parents, professionals and other people who care deeply about the rights of the disabled who are ready, willing and able to stand up and be accounted for, to speak for those who cannot or won’t speak for themselves. That’s how we will create societal change that is long overdue—and help kids with special needs reach their life dreams, too. It’s no easy cause to take on, but I’m doing my best to foster change that helps make these lofty goals a reality, and I hope you will join me.

I want all kids to live better lives, including those with special needs. That means the adults in their lives must take their roles more seriously, while upping their parenting and professional games. The impact that adults have on children is huge— and can last a lifetime, whether good or bad. My commitment is to actions that lead to good outcomes for all kids.

If you want to know more about how you can help redefine those nerve-wracking letters IEP, visit my website: There’s enough there to get you started.
If you have a special needs subject you would like me to ramble on about (no shortage of topics there!), send me an email and I’ll do my best to talk rant about it in future blogs.

Be aware that my book has just been released, so my life is slightly hectic right now. I will try my best to blog at least once a week (no promises!), but check back weekly for fresh stuff. I promise my next ramble will be worth the space— a tribute to that remarkable human being and important special needs advocate, Dana Reeve. Now that is a subject worth blogging about….

In the meantime, do something great to fuel a child's self esteem this week!