The Cemetery Gang Offers Support in Loss

When I was a child, cemeteries scared me to death.

I associated them with every terrifying image that I had ever seen in those scary Hollywood horror flicks of my childhood-- especially the one about the disembodied green hand that terrorized unsuspecting young lovers at those once hip drive-in movies. Years later, Michael Jackson's graphic Thriller video did little to help dispel these disturbing images when it aired repeatedly on MTV. I found myself going out of my way to avoid driving by cemeteries, especially late at night, when it was storming, or on Halloween when the spirits were said to be especially restless and feisty.

I didn’t understand that cemeteries could be places of great beauty and healing until my 12-year-old son, Eric, died suddenly in February 2003. Now, I’m part of the Cemetery Gang, a term my husband and I have coined for grieving adults of all ages who visit the cemetery searching for answers to life’s tough questions. Many of us have buried children.

We come to the cemetery looking for healing and relief from grief. Some days we find it.

Marcella is our gang leader and a friend to all. Her husband died seven years ago and she still mourns deeply. The petite, silver-tressed senior citizen serves as the living cemetery angel. She tells newcomers the best clippers to buy to trim around family gravesites, and where to buy candles that burn for hours, providing light for our loved ones on the darkest night. Eric was afraid of the dark, so that information has comforted us. She gently and confidently introduces the shell shocked to this new place of refuge.

Marcella shares cemetery expertise to help mend her own broken heart. She waters wilting flowers on children’s graves on the hottest days or when families try to out run tough emotions if only briefly by escaping out of town. When the grass surrounding our loved one's gravesites isn't groomed to family standards, it's Marcella who takes a gutsy stance and advocates for needed change.

When her husband died, cemetery rituals gave Marcella a reason to go on living.

The cemetery gang is only one blessing found here. The cemetery is an important social gathering spot where true community is still found. That’s a priceless gift when death blindsides you in the middle of the night and steals away your only son. The cemetery has become my refuge, my friend and confidant, a place where strangers share intimate details of a loved one’s death.

When the cemetery gang asks you how you’re doing, they listen to your answer.

Here, I have watched innocent children gently lay flowers on the fresh dirt of gravesites and realized that we’re not born fearing cemeteries. Still, cemeteries can be brutally honest. My son is buried near a college student who was murdered, a popular cheerleader who died of leukemia, an eight-year-old boy taken by sudden illness, and an infant girl who lived long enough to receive her name.

It’s common to see graduation hats, birthday balloons, enchanting angels, well-loved teddy bears, even Christmas trees at our children’s gravesites. These stark reminders that death doesn’t discriminate, impact how survivors walk. Our gaits are less steady, our immortality less certain. We grant strangers unconditional support. Instant friendships and loyalty are formed. There is little room here for meaningless, idle chit chat.

We protect each other's cemetery turf, and one another.

The cemetery now serves as my life raft in grief’s unpredictable raging storms. After being with my son, the rough waters of daily living seem somehow easier to navigate. I have rushed to the cemetery eager to share exciting news with Eric. Then the reality of his death slaps me hard again, and I wistfully add, ‘but you already knew that didn’t you?' I am convinced that my son now serves as my omnipotent, ever-present protector.’ In the rawest cemetery moments, I’m certain that Eric can see and hear me.

Some days, I share my lunch.

I have reconnected with Eric graveside after rushing frantically to every room in my house, desperate for his scent, desperate to hold him. At my neighborhood cemetery, Eric is not lost, and neither am I.

There is comfort in cemetery rituals that defies explanation to those who have so far been saved from from this rocky path. No one escapes forever.

The cemetery offers me peace and resolution, solitude and friendship. The people here never tire of seemingly endless stories of loss, nor do they urge you to get over it and resume normal life, whatever that means. In the sacred stillness of this place, I can hear children playing on the nearby school playground where my son once played, and church bells ringing as the setting sun hides its face in a dense forest of trees. Here, I have argued tough faith issues with God, while cemetery birds sang bedtime lullabies to my son.

I have learned that cemeteries are resting places for the living. When the cards, phone calls and lasagna stop coming and people go back to business as usual, the grieving come here to remember. At the cemetery, I talk to my son and tell him how much I love him and always will. I grant myself permission to release powerful tears that have threatened to overwhelm me. I remember that Eric’s life and death both hold great meaning and promise to honor his remarkable legacy, whatever the cost.

The cemetery has made me increasingly bold. Life seems simpler, the choices clearer when you are standing on the tender grass or pristine snow of a loved one’s grave. Whatever time each of us has left is far too fragile to spend living with regret or anger. You learn to put one foot in front of the other and move forward, moment by moment, day by day, until the pain begins to ease and gentler breathing returns.

Somehow I have survived every parent’s nightmare. My son died suddenly from medical complications fueled by cerebral palsy. He died peacefully, but my grief is not less intense. My husband and I raised Eric as a child of value. He dreamed of studying music in college one day, a dream we planned to support fully. Hundreds attended Eric’s funeral, touched deeply by a life rich with promise and talent, one cut far too short. I remember all their words of love and support and admiration for my son- and remember how lucky I was, and am, to be Eric's mom.

Visiting Eric at the cemetery has helped me resume my passionate work as an author, journalist and speaker on disability parenting issues, important work he and I began. It’s work I now continue alone, fueled by Eric’s teachings and regular cemetery visits.

As I survey gravesites well tended and those rarely visited, I think Hollywood may have done a great disservice to many grieving souls by promoting cemeteries as places of fear and horror. Today, I know that cemeteries are instead peaceful places of healing and great beauty, and the Cemetery Gang understands far better than most that I didn’t bury a 'disabled' child whose value was too often questioned by society. I buried my beloved son.

In the neighborhood cemetery, everybody’s equal.

JudyWinter.com
Author:
Breakthrough Parenting for Children with Special Needs: Raising the Bar of Expectations

Ashley is Much More than a "Pillow Angel"

Every so often, a story breaks in the press that commands both the world's attention, and its prompt response. Such is the case with the story that broke this week about Ashley, the nine-year-old girl with special needs whose parents chose to have surgery to stunt her growth. Like many tough-life stories about children and parenting, this one tugs at our heart strings, while seemingly dividing us into solid camps of for or against the actions of Ashley's parents.

But there is much gray area that remains to discuss.

While this story has been played out in the press as an ethics issue, it's so much more. Ashley's story represents a human-rights struggle of grave importance, one with the potential to generate invaluable discussions about the never-ending demands of special needs parenting. Regardless of where you stand on the issue of right and wrong, the issue of disability raised by this one story (and there are many that go untold) deserves more thorough discussion.

My hope is that the media, as well as all those so quick to judge the actions of Ashley's parents, will instead take a deep breath, then add their thoughtful, passionate voices to increasingly balanced discussions that will help us create real change for this population, and their families.

If there is one point that this story has driven home, it is that for all of our apparent gains, when it comes to special needs, we are still in the dark ages.

There is no clear-cut, simplistic response to this story, and those trying to make it into one only add more fuel to the story's confusion and public outrage. That will do little to serve the best interests of Ashley, or that of others facing similar struggles. This is ultimately a story about a young girl's life, and the right to be part of what happens to her.

Briefly, here are some of the most pressing issues that I believe this story demands we discuss more fully.

First, while ethics is an important part of this complex discussion, it should not be the defining one (nor the primary topic/guest on talk shows). We need to include the voices of those who live with the day-to-day demands that this story brings to light. We should also include individuals who are living with a disability so we can make more educated decisions. This topic deserves that kind of coverage.

The reach of special needs is huge; 54 million Americans, and more than 600 million people worldwide, have disabilities. Special needs reaches across all socio-economic and cultural borders. We must stop ignoring this timely discussion and instead, do a better job of addressing and resolving the complex issues it creates. We need to reduce the number of images involving self-pity and self-deprecation.

We need to include the achievements of those with special needs in our history books and classroom discussions.

Also, we cannot continue to ignore the lack of adequate resources, services and respite care provided to the families who care for their children at home. Many families are breaking under the weight of their demands. We cannot continue to pretend that their struggles don't impact us. Special needs can happen to anyone at anytime, thrusting once typical families into unchartered territory for which they, and society, are ill prepared to handle. That's a sobering thought.

There is no clear-cut, definitive road map for the challenging journey of special needs parenting. It often does take a village...and the village, and our nation, need to step up.

I parented a child with cerebral palsy for nearly thirteen years. Eric had limited speech and motor skills and was fed through a g-tube, just like Ashley. I know about the issues raised by impending puberty and the demands faced by lifting your child every day. My back still bears the results of that tough responsibility, four years after my son's death.

Still, my husband and I agree that we could never had made a decision to intervene in our child's development in a way as dramatic as that chosen by Ashley's parents. We were always too busy focusing on maximizing our child's potential, not on changing the essence of who he was as a human being. Our choices, while rarely easy, focused on what would best serve our son's wishes, even as we fantasized about tropical vacations far away...

While there were no firm promises early on about what Eric's future development and life would become, other than dismal, we never allowed disability to define our child's value. It took years for the results of some of our commitment to be fully recognized, but ultimately we were rewarded for our steadfast parenting focus.

It took lots of time, patience and hard work. The work was at times exhausting, but when our son achieved even the smallest, most unexpected success, the rewards were exhilirating.

Like many children fed through a g-tube and lacking in mobility, we knew that our son would probably never have reached the height and weight of other typically developing children, making the weight issue a bit of a mute point for us. Perhaps that would have been the case for Ashley, too.

The fact is that the future of many children with special needs may still be up for grabs, and the outcomes may be determined by the choices that we as parents and professionals make every day to help them thrive and grow and lead increasingly productive, fulfilling and independent lives. Our decisions can last a lifetime.

Should we have the right to make decisions that cut a child's full potential short so early in their lives, or at all?

Today, many kids with special needs are still written off far too early in their development. On the flip side, I've met many others given every opportunity to thrive. The difference can be remarkable. All the successful individuals with special needs that I have interviewed during the past fifteen years credited a parent's love and positive choices for their 'unexpected' life success-- and for believing in them when all around them saw only a 'disabled" child.

Brighter futures begin with greater awareness of a person's intrinsic value, lots of love, valuable resources and services, pit-bull parental advocacy, and a mindset focused on what's possible for that child, regardless of a disability. Not every child will achieve the dream of full independence or reach those all-important, age-appropriate milestones, but don't they deserve the chance to try, especially while they are still so young?

We need to provide families and society with greater examples of those with special needs who are productive, independent, contributing citizens. We need to redefine family, and provide these families with the critical support they need to handle their challenging roles well. The lack of positive parenting examples for families helps create a sense of hopelessness that too often results in limited, self-fulfilling prophecies for their children.

I don't always agree with the decisions made by parents, including this one, but I do respect their right to seek out decisions they believe are in the best interests of their children. What disturbs me greatly here is the complexity of a decision that raises serious issues about the value and rights of those with special needs. It reminds me of the experiments that were conducted in secret on children with cerebral palsy in institutions years ago.

They, too, had no voice. We cannot allow the ignorance of the past to define the futures of our children. We have traveled too far.

I can't help but ask if the physicans in this case gave the family an opportunity to talk with parents of children with similar challenges who were handling their child's needs without such drastic intervention? I am concerned by some of the arguments attributed to the professionals involved stating that the parents' actions did not hurt their child. Today, too many professionals still foster stereotypes about children with special needs, while armed with dismal statistics and powerful, stinging words that may take away the kind of hope families need to help them create better futures for their children.

There is still a critical need for the press and public to stop using language that fosters the view of this population as less valued. That includes the use of outdated terminology that reinforces stereotypes. Words like severely disabled, handicapped, crippled, 'suffering from', brain dead and 'confined to a wheelchair' do nothing to raise the image of the value of those with disabilities. The fact is that we can still tell the stories accurately and fairly by using more up-to-date terminology.

One of my biggest arguments with the coverage of this story thus far, is that Ashley's name is often not even mentioned until far into the print or broadcast coverage. We need to focus on the fact that this girl is a human being first and foremost, not just a nameless child with a disability that we can easily disregard. That means using people-first language, always.

While there are many things about this story that concern me, I believe that we have been given an important, long-overdue opportunity as a society to address this population with the respect it deserves.

Ashley deserves at least that much from us, as do all the other children counting on us to best serve their interests and needs, not only our own. After reading their blog, I do believe that Ashley's parents made their decisions out of deep love for their child. But I can't help but wonder if those choices might have been made differently with access to more positive resources, additional dynamic parenting examples, further discussion about Ashley's future potential, and with the benefit of time. We will never know.

We cannot undo what has been done to Ashley, but we can and must remember one important fact: Ashley is much more than just a pillow angel. She is a living, breathing human being.

As a society, how long will we continue to ignore or gloss over that fact?

JudyWinter.com
Author:
Breakthrough Parenting for Children with Special Needs: Raising the Bar of Expectations

To learn more about Ashley, this story, and what is now called "The Ashley Treatment" visit the parents' blog: http://ashleytreatment.spaces.live.com/

Laughing at Those Pesky Little New Year's Resolutions

Those of you familiar with my work as a writer have probably already figured out that I'm big on adding a humorous take to even the most infuriating and exhausting life challenges. My experience says that savoring regular loud guffaws, complete with a couple of loud, ugly snorts, can be a pretty useful survival tool, one that allows us to claim renewed perspective for even the toughest life events.

I believe that a hearty belly laugh, or even a good joke that makes us smile wide enough to show all of our teeth, holds the power to cure most of what ails us. In my efforts to help you end your year on a more positive, uplifting note, and keep all those 2007 resolutions that you are making (or not) into perspective, I encourage you to read the words of one of favorite columnists, and my friend, John Schneider. John's words about his own failed New Year's resolutions in today's Lansing State Journal made me laugh as I choked down my healthy bowl of oatmeal sprinkled with wheat germ and blueberries, and prepared to wave bye bye to 2006.

I hope that John's refreshing, human take on our mad pursuit of New Year's perfection rarely achieved will brighten your year-end celebrations, and put your own take on New Year's goals into clearer focus, too. Enjoy!

www.lsj.com / John Schneider, columnist/ Sunday, Dec. 31st entitled: "I'm not perfect yet, but it could happen in 2007."

You can also check out John's blog at noise.typepad.com/John_Schneider

...And be sure to come back and read mine regularly, too!

So long 2006! I'm ready for you 2007! I think....

Taking Time Out for You!

One of the toughest realities facing parents of children with special needs is the loss of treasured personal freedom.

If you are thinking about making valuable New Year's resolutions that can make a difference in your life in 2007, consider personal time away from the demands of special needs high on your list of priorities.

Remember all those carefree hours you once spent going to the latest movies, hanging out with friends or going for a beer after work? What about all that free time you once wasted reading current magazines cover to cover, or gardening, washing the car, or singing along loudly to the radio on last minute weekend adventures to the beach?

Remember when you could actually take the time to shut the bathroom door to answer nature's call?

Gone in an instant.

These once simple daily decisions have been replaced by big family commitments and limited free time. But with thoughtful planning, you can begin to regain some of that precious time away for activities that will help leave you feeling refreshed and renewed. Reclaiming personal freedom in families of children with special needs often requires creative thinking and lots of juggling, especially if your child has physical, medical or behavioral needs that make finding, and keeping, babysitters difficult.

Then there is the sticky little issue of the costs involved with special needs parenting that often strain family budgets to the max, especially when one parent has given up their income to stay home and raise the children.

Don't let these realities stop you.

While such concerns can make time away seem like a luxury you can't afford, time away from the demands of special needs parenting is crucial to your physical, mental and spiritual health. Think of it as going to the well when you are very thirsty. A solid commitment to self care can help you better face the unexpected parenting challenges that lie ahead, and even handle them more successfully.

With a brand new year just around the corner, this is a great time to add personal time back into your life. Here are just a few simple and inexpensive tips designed to help you escape the demands of special needs in 2007, if only briefly.

Feel free to add some of your own- then go take a walk!

Address and Prioritize Child-Care Needs.

Seek support from family, friends and community agencies to meet this need. Knowing that you have help in place on a regular basis is priceless and grants you the freedom to take time out just for you, free of guilt.


Read a Favorite Magazine Cover to Cover.

Try to avoid tough-life stories and hard news. The idea is to lighten your own mental load for a bit so you can return to your parenting role feeling more inspired, motivated and relaxed.

Exercise!

Take long walks, go for a run, or work out in the privacy of your home. Jump rope, take a bike ride, or dance in front of the mirror. Exercise helps relieve stress and can heighten self esteem, enhancing your ability to handle your parenting challenges more effectively and more positively. Practice deep breathing, too.

Give Your Partner a Foot Massage.

Or just cuddle together on the couch and share your fondest hopes and dreams. Ladies: paint your toenails, condition your hair, shave your legs or take a bubble bath. Use great smelling lotions and soaps that help improve your mood.

Make Time for Those Leisure Activities that Matter Most to You.

Golfers can practice their swing in their own backyard or at a nearby park. Anyone can shoot hoops in the driveway or at a local playground, community center or during open gym at the local high school. Visit the library or go out for great java at a favorite neighborhood cafe. If you enjoy taking photos, carry your camera with you. There are lots of great photo ops to be had during those daily outings.

Advertise for Help in College Newspapers that Attract Students Majoring in Education or Health Careers who are Eager for On-the-Job Experience.

Once you have quality childcare in place, commit to a regular date night and make it a priority. Nurturing your relationship with your significant other can make a big difference in how you handle your special needs challenges, while also enhancing and further solidifying parenting teamwork.

Laugh!

Watch funny movies, tell funny jokes, ready funny stories, even laugh at the absurdity of your own parenting demands. Laughter is healing and a great stress release. And it's one terrific, and free, coping tool on the toughest days.

Journal.

Having a child with special needs produces a wide range of powerful emotions that need a healthy, safe release. Journaling helps us express strong feelings without fear of judgment or harm.

Nuture Your Faith.

Find solace in heartfelt, honest prayer. Whatever your beliefs, there is solace and comfort to be found in spiritual practices, especially during the most difficult days.

Visit Museums, Cathedrals and Synagogues.

The beauty of these places can feed your spiritual side, and your soul, leaving you refreshed and reconnnected with something larger than yourself.

Sit and Do Nothing.

Meditate or light a favorite candle. Quiet time is rare in families of children with special needs, and the addition of it to our hectic daily lives can prove healing, soothing and relaxing. When we are quiet, it is easier to hear our own voice, and as a result, become clearer on the parenting choices we need to make now.

Take a Nap!

Many parents of children with special needs often walk around sleep deprived. Taking a nap whenever you can to help support your body's need for additional slumber, may leave you feeling more energized and in a better frame of mind for facing your demands.

You can find more tips and resources to help you better meet the demands of parenting a child with special needs in my book Breakthrough Parenting for Children with Special Needs: Raising the Bar of Expectations.

JudyWinter.com

Movies of Note

As 2006 quickly comes to a close,and a brand new year waits in the wings teasing us with all those enticing new life adventures, I again find myself in need of some renewed inspiration for all those professional and personal challenges that I am sure to face in the Near Year.

So I've added a little mindless holiday fun into my life, seasoned with some solid inspiration for 2007, something I highly recommend for all parents.

At no time was this simple recipe for year-end renewal greater, or more necessary, than during the nearly thirteen years that I parented a child with cerebral palsy, complete with its many rewards and significant daily demands.

Because Eric's needs made every day life a bit more complicated than that of many other families, I learned early on to look for inspiration and renewal in simple ways, like that found in going to the movies (or renting a dvd on those days when getting away was nearly impossible with my son's demands). One of the things I love most about the holidays are all those great new movie releases, and the rare break in my schedule to actually indulge in my passion for them.

As a writer, speaker and advocate for those with special needs, I am particularly fond of stories that inspire or motivate us to become better human beings. I like those that champion the causes of the common man and woman. I love tales that call us to action.

I like movies that make us think, and then challenge us to act more boldly and fearlessly in our own lives. I like movies that help us believe that we, too, are part of the solution to real-world challenges, big and small. I like movies that make me feel better about the future of our world, not worse.

I cherish movies with good writing, great acting and real substance- movies that feed my brain, while also fueling my heart and soul. I like being reminded of the potential and the power that each one of us holds to change the world for the better, no matter how dire universal events appear at first glance. I like being moved to tears for all the right reasons.

I deplore senseless acts of violence and cruelty and crudeness in films that contribute little if anything to the betterment of mankind, and leave me in danger of feeling hopeless about the world's dicey course, and terribly concerned for the future of our youth. (Think lighted match in a room overflowing with spilled gasoline).

I like walking out of the movies feeling moved and empowered and responsible for my role in creating my own rich and colorful life tapestry. I appreciate knowing that my valuable time and money have been well spent. I like believing that all those people who made the movie somehow valued my intelligence and their own creative integrity. I love movies that challenge adults to do better by the world's children, especially through our critical parenting choices.

I like seeing underdogs succeed, in light of all the bad odds and the loud voices of those ever-present naysayers.

I like leaving the theater feeling ready for another year, whatever life plans to throw at me. I love believing my carefully thought out New Year's resolutions really are possible, not just pipe dreams fueled by too much holiday chocolate washed down with too many glasses of warm wine.

I like knowing that I've got yet another chance to pursue all my fondest life dreams, and a clean slate to do it on. I like thinking that I can still finish the important work that I began during this year--that my life is not over until it's over.

As I prepare for another year of trying to create greater awareness and understanding of the value and potential of those with special needs, in a society obsessed with physical perfection and celebrity, I welcome this brief and energizing seasonal break.

And sometimes, I just want to be entertained.

Here are a couple of year-end movies that worked for me.


BOBBY

I wish that everyone could see this movie. BOBBY explores a day in the lives of the people who work at or are staying in the Ambassador Hotel, on the day that Bobby Kennedy is shot. The film's power is in its simple story telling; it shares with the viewer the stories and personalities of everyday folk going about their daily lives. This human focus is made more powerful by the commitment Bobby Kennedy came to have for all those who struggle or face discrimination of any kind, something fueled by his own pain and loss and introspection after the death of his brother, President Kennedy. BOBBY reminds us that we all lost something big that day, and the world has never quite regained its just course, or its innocence.

Perhaps if enough people see this movie, that harsh reality will change, and maybe the hope and light and concern for the human condition that Bobby Kennedy shared with the world will be again be reignited. After viewing this movie, we can hope...and then we can act.


Also recommended: THE PURSUIT OF HAPPYNESS: starring Will Smith.

Inspiring, motivating and worth the price of admission if only to see Will Smith's young son in his amazing film debut. The kid is cute as can be, and he can act. This is a great real-life story about one man championing over the toughest life odds. I especially like the message to all dads to step up and be good parents and role models for their children, especially their sons, an example sorely needed in today's world. This movie will remind you that you don't have to look far to find someone who has it tougher than you do. This happy ending will leave you cheering, and the real-life example of serious parent power at work will inspire you.

Next Up: Dreamgirls

And be sure to catch CARS now out in dvd.

Don't forget to write me and tell me what inspires you in the New Year, but no attachments please! I won't open them! If you want me to read your heartfelt words, please put your messages in the body of your email.

Happy 2007!

Breakthrough Parenting for Children with Special Needs
JudyWinter.com

Gifts Money Can't Buy

It's hard to believe that Christmas Eve 2006 is one week from tomorrow.

Between now and then, the masses will descend in droves to shopping malls with too few parking spots, or attend work parties and family gatherings that test our social graces and sanity and latest diets, and take part in last-minute online shopping. All this in our determined, if sometimes frantic annual effort to uncover the perfect gift, enjoy a perfect family moment, or create a sense of holiday magic that too often will elude us.

In our rush to create holiday perfection, most will become sorely disappointed and increasingly disallusioned.

Many of us will overspend, overeat, and fly through this season taking little or no time to embrace the true meaning and spirit of this sacred season. Too few will sit silently mesmerized by the power of those tiny white lights on evergreens to charm us. Too few will stop to actually think about why those Salvation Army kettle bells are ringing outside the busy shops,or stop to ask others how they are doing with their own life challenges, then really listen to the answers.

Too few will question the magical appearance of those oversized snowflakes that often fall unexpectedly on Christmas Eve, or stop to pay tribute to those who no longer grace us with their physical presence.

Too many adults will miss the enchanting ways in which children, wise little creatures that they are, mirror the true magic of this season in their gentle faces, bold questions, and wide-eyed wonder. Children are great teachers.

Far too few of us will put down our cell phones and have a face-to-face conversation with another human being, including with those busy store clerks.

Instead, we often fly through the very life moments and spiritual practices and experiences and personal reflections that can help fuel us on to face the difficult life challenges presented us during the rest of the year. In a world overcome by high tech and bad news, this is one time of year when we have permission to slow down and be transported to a quieter, more beautiful place that can help recover from the madness of the prior year. No wonder so many of us are so exhausted.

My gift to you this holiday? Some simply words from a newspaper column I wrote a few years ago about my definition of the word holiday gift, and how having a child with special needs redefined that term for me. I share it with you today, with one week before Christmas, in the hope that during this season of wonder and retail madness, you will slow down long enough to read it, then reflect on your own priceless blessings, most of which will never be found in any store. I know.

I wish each one of you a joyful holiday season and a terrific New Year, one that again offers us all the exhilirating promises of sparkling new beginnings. I hope you make those new choices matter, and I'd love to hear all about them.

Please visit my website to find out how you can share your life experiences with me.

Happy Holidays!!!

GIFTS MONEY CAN"T BUY

"What do you want for Christmas?" my twin sister asked me.

Janice had e-mailed me from her home in Los Angeles, the land of movies stars, gold Mercedes and physical perfection, far from her deep Midwestern roots.

Before I became the mother of a child with special needs, I recited wishes easily: silver jewelry, fine cotton garments and anything from Tiffany in Beverly Hills.

But that was before I had a child with cerebral palsy, something that forever changed my definition of a gift.

My reply to Janice was vague.

"I love books and good tea and uplifting classical music," I e-mailed back. "But I really don't need anyting."

Why was her question so tough, and my answer so obvious?

I began a list that started in my head and traveled to my heart. I want more sleep, gentler circles under my eyes and increased energy for superhuman parenting demands. I want freedom to pursue my career with no personal constraints. I want more time to nurture my marriage and quality child care for all kids.

I want to make a difference in the lives of others.

My wishes quickly gathered emotional steam.

I'd love to see my son walk and tell me about his day. I wish adults would look past his wheelchair and risk inviting him to their house to play. I want Eric to ride a bike or skate through his neighborhood on a hot summer day or chase fireflies or do a human cannonball into a pool.

I want Eric to sneak out of bed early on Christmas morning and marvel over Santa's magic or swat a pesky mosquito and confidently voice his hopes and dreams, something made nearly impossible with his limited motor skills. I want him to ask me the tough questions about cerebral palsy, including "Why?"

But I already know that if these gifts never grace my life, I won't love Eric any less, or marvel more when he struggles to say, "I love you." His physical challenges have demanded that I stop long enough to savor fireball sunsets, and freed me from the commitment of Sunday morning soccer, which grants our family a sacred day of rest.

Our daughter, Jenna, was only six when our special needs adventure began. Now she towers over me, resplendent in ballerina toe shoes. Her sophisticated and heartfelt poetry puts my own poetic ramblings to shame. My first-born helped prepare me to successfully parent a child with special needs, because it was Jenna who first taught me how to love unconditionally.

I wish I could give her back all those moments stolen by the demands of having a special sibling. Yet, I would never trade the compassionate young woman she has become, embracing the skills that empower her to champion over future adversity.

My children's gifts are priceless, indeed.

In return, I wish them a more compassionate and tolerant world. Yet in this day of hate crimes, road rage, global warming and escalating war, I am not naive enough to believe this is guaranteed.

The intensity of my parenting journey has blessed me in countless ways. My faith in God has been solidly nurture and keeps me on course. I have gained valuable communication skills while advocating for needed societal change.

But I would love more precious moments with nurturing friends who remained loyal when Eric's parenting demands made reciprocation impossible. They understood, and when I returned from exhile, these incredible, talented women warmly embraced me.

Today, I still overindulge in books and fine clothing and silver jewelry, but I no longer need these things to feel complete, a gift in itself.

So I suggested my sister send me a gift card from a national bookstore where I will probably buy another special needs resource to help me better meet my daily parenting demands. My decison won't make me a poster child for the retailers, but it will make me proud of whom I have become.

Fact is, I already have enough gifts to last me every Christmas for the rest of my life. If I never again received an enticing, ribbon-draped parcel or prized blue box from Tiffany, I would still be rich beyond measure with gifts that money can't buy.


JudyWinter.com
Breakthrough Parenting for Children with Special Needs

Remembering the Life of a Child through The Compassionate Friends Worldwide Candle Lighting

A quick reminder to all those who have lost a child, or to those who want to support others in such a loss, this Sunday, December 10th, is the annual Worldwide Candle Lighting started by The Compassionate Friends.

At 7 p.m. local time, candles worldwide will be lit in memory of children who have died throughout the world.

"The Compassionate Friends is a national nonprofit, self-help support organization that offers friendship, understanding, and hope to bereaved parents, grandparents and siblings. There is no religious affiliation and there are no membership dues or fees."

What began as a rememberance on a much smaller scale on the Internet in 1997 has become a worldwide movement and yearly tradition that gives families worldwide the opportunity to honor their loss, while also paying tribute to their children's lives.

For one evening, the world grieves together. There is powerful healing in the reality that on this single evening millions of flames burn brightly across the globe. For one evening, our grief is universal and understood. We do not carry our loss alone. There is comfort and solace in such numbers.

My family has taken part in this ritual for three years. We find something comforting in this peaceful, quiet act that validates our loss and helps offset the emotional reactions that loom large during some family activities and seasonal events, actions that many who have lost a child may find surfacing during the holiday season. These are powerful, tough-to-explain emotions that the masses who have escaped such tragedy rarely understand.

But on this evening, however briefly, we are allowed to sit quietly, mesmerized by a candle flame and recall fond memories of our son's life. We laugh loudly, or let healing tears fall silently. We are reminded of our son's continuing presence in our lives and in our hearts.

It is a priceless holiday gift that we give ourselves yearly, a simple act that I highly recommend.

For more information on the Worldwide Candle Lighting and the important work of The Compassionate Friends, visit compassionatefriends.com.

May it grant you peace, if only for an evening.

www.JudyWinter.com
Breakthrough Parenting for Children with Special Needs

Giving Thanks for Children with Special Needs

As we find ourselves again facing that lovely, quiet, humble little American tradition known as Thanksgiving, I now know why I love this day more than most of the noisier celebrations we honor each year. In this complex world in which we live, I love a day that has as its sole purpose the simple act of giving thanks, even as we stuff ourselves into gastric oblivion.

This holiday embraces the old-fashioned idea of being thankful for what we already have. Pausing to give thanks for the abundant blessings already in our lives, no matter how small they may seem at first glance, is an act too often overlooked in today's materialistic world. On Thanksgiving, we are free of witnessing events like those involving crazed adults fighting over overpriced games and toys, at least until the coupon clipping and shopping frenzy begin in earnest. That day-long reprieve alone is a relief and makes me happy to celebrate this gentle day.

Thanksgiving invites us to slow down for a few hours, not a bad idea, especially for those facing the daily challenges of parenting a child with special needs.

I know that it can be tough to uncover the blessings in your children's challenged lives, and in your own, especially when so much of what families hear about disability is negative and focused on a child's perceived shortcomings and apparent brokenness. Depending on where you are in this parenting journey, this day, this year, may or may not seem deserving of your thanks. All the more reason to dig deep and reflect.

This Thanksgiving, take few moments between the turkey and pie and football and family squabbles to really look at your children, to see where their strengths and gifts lie, to honor what your children bring into your life, to see how far you have come on this rocky journey. For one day, put aside your tough role as an advocate and just be your child's mom or dad, sharing hugs and kisses and board games and movies and walks and talks and quiet time together.

Give thanks for your tears.

Give thanks for what you and your child have achieved so far in life, no matter how hard-won or small the gain. Give thanks that we live in a country that is years ahead of many others when it comes to understanding the value and rights of these children. Give thanks for Internet access that has opened up the world for all of us, helping people connect worldwide and access valuable resources, while networking with other families who are also trying hard to juggle it all, just like you. There is comfort in numbers...

On this day, give thanks for the ways in which your child has made you a more responsible parent, a better human being, one who is more tolerant, less judgemental, more patient, and a better child advocate with the ability to multi task on little sleep. Be thankful that your child has taught you that it's okay to ask others for the help you need. Give thanks for your growing recognition that it is our individual differences, and those of our children, that really do make the world go round. Give thanks for all of your children.

Give thanks for the freedom to celebrate your personal faith, and all the ways in which it helps you face, survive, and even celebrate the gifts of each new day of life.

Pausing to reflect on the gifts of special needs, even when you have to search hard for them, can help give you a better handle on your challenges, giving you more energy for the challenges that lay ahead. It balances out the rough moments. Reflecting on your blessings can be a powerful motivator, helping you focus more on what's possible for your child, and on the important role that you play in that child's life success, a positive focus that may help create additional blessings in your life.

Since I try to practice what I preach, here are some blessings from my own life that I will be giving thanks for tomorrow:

-Seeing my book Breakthrough Parenting for Children with Special Needs published and out in the world, where it belongs, thus honoring a big promise I made to my son before his death to help other children with special needs (and their families) live better lives.

-Meeting so many wonderful families at my book signings across the country whose commitment to and love for their children with disabilities has given me great hope for the future of these children, and others still to come. I am grateful for the many blessings you have shared with me this year, including your examples of courage, love, commitment and faith toward your children. These all fuel me on....


-I am grateful that I had the honor of meeting many wonderful people this past year who recognized and supported the value of my work, including: Timothy Shriver, Felecity Huffman, Marlee Matlin, and others. It has been a year of great blessings, amazing moments, heartfelt stories, and my own healing from the loss of my much-loved son.

-I am thankful that Eric's spirit is still strong and very present in my life and in my work, and that my daughter has now successfully taken her place as a responsible young adult in the world, while continuing her three-year relationship with a wonderful, talented and spirited young man!

-Finally, the food choices at the table this time of year are simply the best!

Blessings are everywhere; we just need to take time to slow down, reflect and then honor them. Once you begin searching, the list just seems to grow...and for that balance in my life, I am incredibly grateful.

Happy Thanksgiving to you all!


JudyWinter.com

Chicago is My Kind of Town

I'm blogging this from Chicago, one of my all-time favorite cities. This big-city jewel has a intoxicating energy that always leaves me eager to return. If I go too long without a visit to Oprah town, I find myself on edge, the writer in me screaming for a much-needed fix of cosmopolitan inspiration. The captivating blend of great shopping, deep dish pizza, and the sight of the Chicago Tribune Tower always energizes me. I am a reporter at heart.

My son, Eric, also loved this accessible city, which only adds to its charm for me. I still remember the huge grin on his face as he surveyed the giant skyscrapers from his wheelchair for the first time. My son was clearly mesmerized by the sight of it all, much as I was the first time I visited a big city.

Today, those memories remind me of why we placed such a huge focus on the importance of putting leisure time activities, including vacation and travel, back into our lives after our son's birth. While those adventures took careful and thoughtful planning because of Eric's special needs and wheelchair use, they always left us feeling as if our family was no different from any other, if only for a little while. Creating those memories were worth every ounce of effort they required.

On our trips to Chicago, Eric's wheelchair always came in handy. We would load it down with Miracle Mile purchases carefully selected with the help of my fashionista daughter, Jenna, now twenty two and living on her own. My son's solid sense of style closely mirrored his sister's and every selection of apparel was carefully made. Remarkably, this hip brother and sister retail team always agreed on the choices made.

During such outings, the intensity of the special sibling bond and deep, heartfelt connection that I observed always brought me such joy, as do the memories of them now.

On this return trip, I feel Eric's spirit with me strongly as I rewalk those steps alone, savoring the memories of shopping adventures I enjoyed with both of my children by my side...Today, I am both a grieving mother longing for another life adventure with my son, and a proud mama working hard to come to terms with empty nest now that my daughter has successfully claimed her place as an adult in this world. As a parent, I have been twice blessed.

Now I must work to reclaim my sense of self and uncover a new place in the world, one no longer defined by years of daily parenting demands. I am rediscovering who I am as a woman. My new path is proving both unnerving and exhilirating.

As a child, the little gypsy in me dreamed of running off to the big city, especially the literary capital of New York, to claim my fame and fortune penning literary insights that got me noticed. But I traded in that little child's dream and chose instead to raise my family while living in the more predictable, supposedly safer surroundings of surburbia, complete with white picket fencing. My priorities had changed.

Today, my life demands have changed dramatically, leaving me free to travel more easily. It is one blessing of my new, more independent life as an author.

Now I travel as often as I can. Chi town is one city that keeps me returning often with it lure of big city living and my appreciation of Midwestern hospitality and the warmth of its people. And my writing goals today are less ego centered and more focused on helping improve the lives of others.

Fact is, Chicago is a big city with a great small town heart.
All that and Oprah, too.... I'll be back again soon.

Where will your next adventure take you?

JudyWinter.com
Breakthrough Parenting for Children with Special Needs

Educate Yourself!

While speaking about my book in front of another large group of parents and professionals a couple of weeks ago, I was again reminded of the importance of telling parents the power of these two little words: EDUCATE YOURSELF!

Wherever I go, one or more parents always expresses their frustration over how to get their children the services and resources they need through the Individualized Education Program Team meeting (IEPT). Yet, when I ask if they have educated themselves about the law and their children's rights before going into the meeting many stare at me as if I've lost my mind. Far too many parents think that it is someone else's job to educate them during this exchange, and that professionals will do it with a huge, kind-hearted grin while sharing all the valuable educational goodies in their possession. Wrong.

It is your job to do your homework before you ever set foot in that room. Not knowing the terms of the game leaves your at a great disadvantage, and your child's future at risk. How can you expect to create an effective IEP when you don't understand the terms of that meeting? Not doing your homework keeps you from advocating effectively, and ultimately, hurts your child. No one has as much to gain from preparing well for this meeting as do you and your child.

Navigating the educational system, especially as it relates to the Individualized Education Program Team Meetings (IEPT) is not for the fainthearted. That means you had better be prepared BEFORE you enter that room. If you expect the school to tell you (and generously offer) everything that your child is entitled to (think of it as a gambler showing all their cards in a big stakes poker game), you will be seriously disappointed.

The reality is that school districts are dealing with serious budget concerns that are increasing yearly and they are working overtime to figure out how to balance those huge deficits. These problems aren't going away- and while it is not your responsibility to carry their budget concerns on your back, it does make it even more important that you educate yourself to get your child what they are entitled to by law.

(Note to Professionals: While I respect the big budgetary challenges facing you in today's world, please do not to place the burden of your budget needs on the families who are working hard to get their children the services to which they are entitled by law. Your anger/frustration about this issue is often missplaced. You should be directing your concerns to the governmental/educational agencies and politicians that have placed your districts in this position, and denied you the resources you need to meet the legal/educational rights of these and other children (parents can do this, too). Balancing your district's budget is not the job of the parent. Most already have more than their share of responsiblity on their plates and many are struggling under the weight of it all. It is a demanding role that parents cannot walk away from).

Never forget that knowledge is power. No where is this more evident that in an IEPT meeting. The reality is that parents are their child's best advocate, and that effective advocacy requires that you take time to prepare well for meetings and appointments. If you leave it someone else, your child loses.

Now take a deep breath- and go prepare well. Your actions will make you an Increasingly Empowered Parent (My new definition of the IEP). See the difference?

To help you do your homework, here's one great, family-friendly resource to help you better understand the law as it impacts children with special needs. www.wrightslaw.org.

You can get a lot more great resources and lots of IEP info/tips in my book Breakthrough Parenting for Children with Special Needs.

You do have my book, right?.

www.JudyWinter.com

I LOVE Little People. Big World.

With the exception of Dancing with the Stars, I admit I've grown a tad weary of whole reality series phenomenon that threatens to fry my brain and steal my hope for the world's future. But then I stumbled acrossed Little People. Big World. on The Learning Channel, and now I'm back on the reality board.

I love this show! I love this family! I love their parenting style and commitment to family. I love their imperfections! And I love the Learning Channel for putting it in our living rooms!

Kudos TLC! The show is informative, entertaining and family friendly (no V Chip needed here!). This show is all about parents working hard to be parents, not their kid's best friends. These parents are real and human, committed to teaching their kids the important stuff like manners, civility and a hard-work ethic, in light of having some extra personal challenges.

Briefly, here's the gist of the program. Two parents, Matt & Amy Roloff, are both short statured, (for more on dwarfism and the current acceptable terminology, check out www.lpa.online.org). They are raising 4 children, one of whom, 16-year-old twin Zach, is also short statured. The program follows the daily lives of the family as they work their farm (Roloff Farms) and try to raise all the kids to be the best they can be, while also facing the physical and societal challenges presented them by dwarfism.

Disabilty advocacy never seemed so effortless or more powerful or more fun. The Roloff family will leave you cheering!

These parents spend real quality time with their family for all the right reasons, while educating the rest of us about ability. And that gutsy mom, Amy, is one wise soul with an infectious enthusiasm for life that jumps right out of the television screen right into your living room. My mom hat is off to you, Ms. Roloff! You are one charming woman...

If you haven't yet discovered this family and programming gem, do yourself a favor --tune out the television wasteland choices and tune in to TLC Friday nights at 8 p.m EST. But be warned. The show is addicting. But it's a healthy addiction, and I can almost guarantee that you'll feel better about daily life and redefining disability after spending some time with the Roloff family.

Little People. Big World. is a giant of a family show with great heart. I like knowing what's going on in the lives of this incredible family.

Now I gotta watch the last episode I taped...

Check it out!
http://tlc.discovery.com/fansites/lpbw/lpbw.html?clik=tlc_leftnav

Surviving The Death of a Child

Huge apologies to those of you who have been checking for new entries to my blog since September 11th. So sorry to make you wait this long. I'm still here. I've just been caught up meeting other life demands.

As the whirlwind activity resulting from my initial book release last March (and the subsequent travel for media and book signings and HOT, humid summer that was part of it all), finally began to settle down, I found myself a bit spent and needing time to catch up on other life stuff that had been put aside out of publication/promotion necessity.

(Note to would-be authors: You need to know that marketing and promotion before and after publication is a big part of your job, too. Unless you're a celebrity or have already sold millions of books (think Harry Potter), self promotion is a huge piece of the publishing pie. Don't say I didn't warn you)!

My renewed focus on restoring life balance includes spending less time checking my book sales on amazon.com and more time on my grief work over the death of my son.

(Note to publisher: Rest assured that I will continue to take advantage of every single opportunity to spread the word about my important book, as I have so far in this exciting book-author process!).

Now that Breakthrough Parenting for Children with Special Needs: Raising the Bar of Expectations has taken its rightful, solid place out in the publishing world, and I have fulfilled a huge promise to my son to see this uplifting resource in print, I feel like I can finally breathe again.

Since Eric's death in 2003 at age 12, my days and nights have been filled with book project demands, leaving little time to mourn, something that eventually catches up with you no matter how hard you try to outrun it or deny it. Grief is a complex, grinch of a subject and not for the faint of heart. It must be honored and respected. Like the confident blond, blue-eyed beauty at the school dance, grief refuses to be ignored. It is powerful stuff.

In the pages of Breakthrough Parenting, I share several emotional, inspiring moments from Eric's life and death, in the hope that these words will help other children and families facing similar challenges lead better lives. But these past few weeks, I have been taking some much-needed time to mourn privately. The healing is slow, unpredictable, unnerving and at times, exhausting. I now understand why parents never really get over the death of their child.

The big challenge is to learn from your loss, grow from it, and then figure out how to reclaim a new life for yourself, one that does not include your child's daily physical presence and demands. The prior demands of special needs, and all that entails, help complicate grief work, magnifying the intensity of your loss.

These are tough issues of loss and reintegration that I continue to explore in my own life as I prepare for what's next?. It is no easy feat to reclaim your heart and soul and life purpose when your world has been ripped apart in such an unsettling and dramatic way. The death of a child cuts deeply and the wound still throbs daily. My best guess is that such a horrific wound never really fully heals. I'm just learning not to pick away too deeply at the fragile scab every day.

As I have traveled on this bittersweet grief journey, I have uncovered some wonderful, healing tools. As promised in the past, when I discover a particularly valuable resource, I will share it with you. That is the case with the book How to Survive the Loss of a Child: Filling the Emptiness and Rebuilding Your Life by Catherine Sanders, Ph.D. (Three Rivers Press-Random House Publishers).

Since my son's death, I have accessed many different books on the subject of grief, many have been of comfort. I have shared several of those in my book in the chapter addressing the death of a child. But no resource about how to face this terrible loss has comforted me more that Catherine Sanders book. While my grief is not as intense as it once was, this is the resource I refer to time and again.

Sanders knows the loss territory well. She, too, lost a child in a dramatic and unexpected fashion. It took her ten years before she was finally ready to address that grief fully. Sanders shares her remarkable wisdom, and her own painful journey, in a way that offers hope, inspiration and solace to others facing the cruelest life loss.

To those who are struggling with the loss of a child, Sanders gentle wisdom and professional expertise on grief proves healing and comforting. She makes a wonderful life guide, and serves as a life-saving buoy in the rough currents of grief.

My hope as you face your own loss is that you will be gentle with yourself and seek out whatever support you need. Such wise, bold actions will help you heal. This is no time to be brave or retreat into isolation or over scheduling that keeps you from your important grief work. I know.

Also be sure to check out Compassionate Friends, a wonderful online resource for those facing the loss of a child. www.compassionatefriends.org. There, you will find much to help you walk this rocky path well.

I wish you peace...

JudyWinter.com

Remembering September 11th

Five years ago our nation lost what little was left of its innocence. Wives lost husbands, husbands lost wives, parents lost children, children lost moms and dads and grandparents, aunts and uncles. The magnitude of the loss is great on so many levels. It is difficult to put into words, even for a writer used to writing about tough life stuff like death and trauma. We all lost something precious on that day.

As the twin towers crashed to the earth that terrible day in NYC, we watched history unfold in horror and disbelief. I remember thinking that up until that event my worst nightmare as a mother was wondering if someone would manage to get my son and his wheelchair out of the building to safety in the event of another tragic school shooting. That was, and still is today, a real concern today for many families, another unfathomable horror, one born on American shores.

But the increasingly thin line that now separates sane acts from the horrific crossed over to a whole new degree on 9/11. None of us will ever again be quite so lighthearted, so seemingly invincible, not even in our laziest moments of slumber. You don't get over such senseless, hate-filled acts ever. Somehow we do adjust, rewiring our wounded psyches and hearts and egos enough to continue about our daily lives in the best way that we can, given the ever-present and often unseen enemy. At times, it feels like we are all actors in a dark play, trying to pretend that everything around us is normal, a world filled only with beauty and wonder and people chasing big American dreams. But the world is no longer that innocent, and neither are we. And we never again will be. When will we wake up to that reality?

Now more than ever, it is crucial that our acts of goodness, kindness, tolerace and acceptance of differences build up steam and momentum; we must not retreat from being humane, from fighting hatred and injustice. We need to challenge our young people to better understand the critical role they play in impacting the world in more positive ways, in building the nation's future foundation, one that has nothing to do with fame and celebrity and materialism and self gratification, Nick and Jessica, or overpriced designer handbags.

We can start our work right now by being better models for our kids, fully present in their lives, teaching them the skills they need in order to make a difference in this crazy world, teaching them to give back to others and to model respect and tolerance for the value of the many world cultures that co exist with ours, including on our own shores. By helping empower our youth to understand that they CAN be part of the solution to such world madness, we offer the world, and ourselves, hope for a better future. We can't put this world back on course for very long without them. It is their inheritance.

While the media clearly feeds our belief that the world is indeed a frightening place with danger lurking around every single corner, the reality is that there is much good in the world. We just don't run tag lines across the bottom on CNN non stop for such acts. But there are people risking their lives every day for our freedom, neighbors watching out for neighbors, parents helping the most challenged children have better lives, adults becoming mentors. Trees still stand, flowers still bloom, cats still purr, children still laugh, the seasons still change, the surf still pounds the shoreline. We still go on, day by day. Wounded, limping at times, still holding our heads high, boldly, even menacing at times to others. We are a tough, kind hearted bunch.

Terrorists did not kill our spirit, our resolve, our fight, our heart, our democracy on September 11th, 2001. Did they make us take notice? Without a doubt. Did they take the wind out of our sails? Perhaps for a bit. But evil can never truly triumph over good. And the actions of a few cannot compete fully with the commitment of the masses to love, move forward and take care of one another. Hated is a powerful weapon. Love is more powerful.

As a nation we do need to awaken, to check our arrogance. We have a bad habit of forgetting the trials of the rest of the world as we enjoy the freedom and materialism our country affords. We behave as if we are superior to all others on planet earth. We're not. We are all human, too, with human failings and free will, regardless of the constraints placed upon us. We have much work to do on our own shores to make the world a better place. Each one of us should take the time to do a gut check on ourselves- how are we spending our gifts, talents, resources? Do we take time to pay attention to what's going on in the world- to help make a difference in our own hurting backyards? Are we rasing our children to be good citizens who give back?

September 11th reminded us that we are all human and we do depend upon one another to survive in some way. No one is immune to suffering, to loss, to trauma. The scale of this event makes it tougher to ignore those facts, as it should.

Today, a call has gone out for a moment of silence and reflection, a time to remember those whose lives were cut short in this unspeakable act of hatred and senseless violence. I believe we should take time for silence every single day to see where we are in our own lives and see where we are headed with our personal decisions and actions. We need to examine how we each own a part of the solution to peace and acceptance that this world so desperately needs. When will we finally figure out that the time for real action is now?

So while the strains of the National Anthem and God Bless America are repeated over and over today, I hope you take the time to really listen, to think about what this word and music really means and feel it, don't just listen casually as you return emails, run the kids to soccer practice, cook dinner or feed the cat. September 11th really happened, and we cannot forget what that means to all of us or to our children's futures.

One person can make a difference, for good or evil. I have seen it time and again. The only thing that stops real freedom and allows evil to triumph, even if only for a few seconds, is our inaction, our laziness, our self centeredness. We can andmust make better decisions. It's time for us to make some tough personal choices that impact our nation and our world in more positive ways, for the sake of our children.

The world needs healing and we can choose to be part of the necessary healing. I hope that you choose well.

God bless America, and every single one of us, too.

www.JudyWinter.com

Walking Free

I believe strongly that one of the greatest gifts that any family can give their children, especially those with special needs, is the gift of a healthy mom and dad with good coping skills. And that comes from pursuing fitness on a regular basis.

I know how tough it can be to fit such activities into your busy, overscheduled and challenging lives. I also know the benefits outweigh any excuses you can conjure up not to do it. Parenting a child with a disabilty can feel like running a marathon without the proper training- the stressses are far too real, sometimes intense, and they take a toll on your body, mind and soul. That makes you at increased risk for burn out, something regular fitness can help prevent. I know.

Throughout my son's short life, we worked hard to stay physically fit, and we included Eric in that fitness plan to ensure that our lack of childcare or the ability to get to a gym (or afford one) did not interfer with our good intentions. It was worth every ounce of effort.

Physical fitness can save your life in more ways than one.

To further inspire you, I am sharing a piece I wrote about the value of physical fitness and parenting a child with special needs a few years ago before Eric's death in 2003 at age 12. To learn more about Eric, visit JudyWinter.com or get my book Breakthrough Parenting for Children with Special Needs: Raising the Bar of Expectations.

Now read on, then get your own bodies moving!

WALKING FREE

It was the kind of cold and snowy Midwestern morning when personal motivation is tough to come by. As I burrowed deeply into a cozy cocoon of toasty blankets, my fat Siamese cat purred contentedly at my feet. I echoed her gentle sigh of complete contentment. In this perfect life moment, I harbored no desire to get out of bed, lace up my shoes and go walking. Nada. Zip. None.

Still, I released a loud groan of acceptance and propelled my body over the edge of the bed anyway, then sat wiping heavy winter sleep from my eyes. My furry friend blinked at me sleepily as only cats can do, enticing me back to bed. The only thing that prevented me from diving back under those still warm covers was knowing that I couldn’t disappoint my walking buddy. We’d covered too much important ground together.

My walking partner is my ten-year-old son, Eric, who has cerebral palsy and uses a wheelchair. His spotless Nike shoes have never met pavement. But his disability doesn’t prevent us from meeting our family’s fitness goals together. Eric loves taking daily walks and running with his father. Our son has accepted the important role of fitness coach,coaxing us up steep hills and encouraging us to challenge our pace. In an interesting role reversal, Eric has become the taskmaster!

On this particular November morning, Eric and I cautiously tested the slippery pavement at the beginning of our familiar four-mile course. The frosty air quickly painted his cheeks and gentle snowflakes tickled his nose, causing him to giggle. As Eric breathed in the clear, crisp air that helps improve his health, my body and soul began healing, too.

In 1990, Eric’s traumatic birth dramatically altered the predictable course of our lives. My husband had run several marathons, including Pike’s Peak in Colorado. I’d embraced walking, a fitness activity with its roots deep in my childhood.

As a young girl,I’d felt elation whenever my shoes hit the deserted country roads filled with stones and gravel. The healing sounds of birds and the laughter of children playing hide and seek in tall cornfields nearby, captivated me. I can still hear the loud, crunching sound of pebbles as they lodged in the well-worn tread of my tennis shoes. I savored sweet berries from roadside bushes, and carefully put my hand through a barbed wire fence to pet the wild horse and donkey that I strongly believed had been denied any real freedom.

Even as a child, I loved to champion the cause of others, especially the apparent underdog, including animals.

During those long, leisurely walks, I treasured both solitude and personal freedom. I was hooked on walking. It was a simpler time in my life. As the years went by, walking helped me sort through teenage angst and survive the traumatic breakup of my first true love. As I increased my mileage, I dreamed of exotic lands that I would one day visit. The more ground I covered, the bigger my dreams became.

I had no idea how such simple acts would prepare me for my future challenges.

In the months following Eric’s birth, the reality of his disability sank in slowly. His life-threatening illnesses and repeat hospitalizations proved exhausting. I was at risk of losing perspective. So as in childhood, I hit the pavement to escape my tremendous responsibilities and reclaim my sanity, if only briefly. Walking allowed me to return home and boldly face the next parenting challenge. Without its enormous benefits, I could not meet the daily physical, emotional, and spiritual demands required to parent both my children well. Such a simple act resulted in lasting benefits.

Walking has become my friend, my confidant and my counselor. It’s allowed me to raise my son more normally, in light of his disability, improving the lives of everyone in our family. The first time my husband and I took a walk with Eric, his heightened sensitivity to light, sound and cold forced us to return home. But those first important steps represented a new beginning. We continued to walk, losing pounds and relieving stress, while regaining valuable perspective and enjoying priceless family moments.

Walking has given our son an increased sense of belonging.

Today, Eric is a local celebrity and serves as an example that fitness is important for everyone, including the disabled. After seeing my son in his special-need’s jogger that allows him to move more easily through snow and sand and rough terrain, people feel freer to approach us and ask about Eric’s needs. As a family, we’ve participated in several races, including the annual eight-mile walk around Mackinac Island, a heavenly family oasis free of motor vehicles located in Michigan’s Upper Peninsula.

It was there that Eric proudly received his first medal, the only person in more than one thousand entrants to enjoy the beauty of the Island race from a wheelchair. As we placed the medal around his neck, Eric beamed, sharing the enchanting smile that has stolen many hearts during the past decade.

There were times when it would have been easier for us to stay indoors, hiding our son and our fate from the world. We could easily have sacrificed our health and become a family in crisis, overweight and overwhelmed, even self medicating by using any number of potentially addicting and dangerous drugs of choice, including food, alcohol or worse. We have always refused to take that road, yet I now hold a greater understanding and sensitivity of how someone can make such choices to cope...

By choosing to include Eric in our fitness plans, we’ve claimed a richer, healthier existence, one that has helped heal our once grieving hearts. During those walks, everything about our life seems more normal. Such priceless gifts allow me to drag my still sleepy self out of bed on a cold, snowy Midwestern morning, while my lazy cat purrs loudly, enticing me back to bed.

ADHD & Yoga

I understand far too well the excessive time demands that face most families of children with special needs. So I'm committed to doing my best to bring to your attention any timely, helpful and promising information that I run across regarding treatment options for a wide range of disabilities.

Here's one brief sample.

This week, I discovered an interesting blurb in YOGA JOURNAL (Yogajournal.com). I admit that I love yoga and have practiced it on/off for many years (before it was cool to do so), but I'll save that journey for another day's blog... The information that I uncovered this week is worth sharing with those of you who face the daily challenges of Attention Deficit Hyperactivity Disorder/ADHD.

Written by Jenny Andrews, the piece reports that a 2006 German study found that kids taking drugs for ADHD may benefit significantly from yoga practice. These gains include helping children to develop increased powers of concentration- an important consideration with another school year just beginning. In my book, anything that may help children with special needs achieve greater educational/life success is worthy of further investigation.

I believe that yoga practice can be beneficial for a wide range of special needs, but I also believe that each individual needs to do their own research and decide if a particular resource option is right for their own child and family. To learn more about the benefits of yoga and ADHD, visit www.chadd.org-- and be sure to let me know what you think by emailing me at JudyWinter.com. Here's the link to the Andrews article: Yoga and ADHD.

I never get tired of hearing your success stories... they fuel me on.

Namaste.

Judy Winter

Breakthrough Parenting for Children with Special Needs: Raising the Bar of Expectations

Winter Ramblings Blog

Josh Blue Rocks!

One more quick entry today!

I just can't go another day without extending my big congratulations to Josh Blue, the talented, very funny comedian who recently won the title of Last Comic Standing on the popular television program on NBC!

John happens to have cerebral palsy, but any concerns I had about his receiving nothing more than the pity vote quickly disappeared as the seasoned comic took to the stage week after week with material worthy of a pro. Josh captured the loyalty of the audiences both in studio and at home while skillfully using his disability in his act without coming off as self deprecating.

As a skilled comic (and he is a comic first) Josh had no intention of focusing on using his cerebral palsy to capture the pity vote; he was using his tremendous talent as a comic to win this thing. And while so many comics today seem to believe they must use profanity and address even the most vile subjects, (some better left to late late night routines), Blue's comedy was cutting edge without being offensive, allowing families to watch a feel good story together without concerns about personal embarrassment, censorship or a v chip. Josh Blue won it all by just being incredibly funny, not profane. How refreshing in every single way.

Did I mention that Josh's parents were in the audience each week, with pride and love clearly evident on their faces? I have no doubt that their parenting played a key role in Josh's success and I hope that now that he has been catapulted to tv stardom, we will hear more about his life growing up with a disability.

Congrats to the entire Blue family, and to the cool viewers who wisely looked beyond one man's disability to vote for the best comedian!

What a terrific example this story is for all those with special needs, and their families, especially as the new school year begins-- and I felt you should know about it! Against tough odds, Josh Blue won Last Comic Standing. Now what talents will you nuture in your child this year?? Begin today!

Check out Josh Blue at JoshBlue.com-- and more about me at JudyWinter.com!

Back to School!

Ah, the joys of facing a brand new school year!! Unstained clothing, fresh haircuts, over-sharpened pencils, shiney red apples, crisp morning air, and young children giggling innocently and nervously at their bus stops, while also trying their best to scuff those brand new shoes. It's a time of fresh, unlimited possibilities!

I adore Fall! It's my favorite season. I love wearing hip boots and slouchy writer's sweaters and heading off on leisurely weekends to indulge shamelessly at those yummy cider mills. Bye bye humidity, sweaty brows, and out-of-control hair! Hello hot spiced cider, warm sugary donuts, and stunning, vibrant colored leaves. Relief from that crazy 100 degree heat and stifling humidity (global warming anyone???) is finally here, along with a bit more parental freedom for you, right?... Sounds like good fun.

For many parents those three powerful little words back to school often result in unedited shouts of joy and excitement, fueled greatly by grand visions of greater daytime freedom, (tempered a bit by the unwelcomed reality of all those shocking back-to-school clothing bills)! All things considered, it can be a really cool time of year.

But for parents of children with special needs, the beginning of a new school year can also elicit some heavier emotions including fear, intimidation and issues of trust. These parents face the tremendous challenge of letting their precious babies go, no easy feat when you've had your maternal protection feature in overdrive for five years. Been there, done that... For parents of children with special needs, severing the tough special needs parenting cord can take longer than in most families, it takes a sharp emotional knife!

Throughout the coming months, I will do my best to share with you my parent-tested words of support designed to help you begin letting go. I will also provide you with valuable resources to help you address many on-going school issues more successfully and with greater personal power. School issues and personal empowerment are subjects I have granted a lot of space and voice to in my book Breakthrough Parenting for Children with Special Needs: Raising the Bar of Expectations. If you don't have a copy, I recommend you get one during your back-to-school shopping adventures! (Big surprise, huh?).

In my blog, I will refer to some of those entries, while also sharing some of my other essays that have been published elsewhere (fortunately, I own the rights!). By sharing more of my work about the day-to-day challenges I faced parenting a child with special needs (until Eric's sudden death at age 12 in 2003), I hope that you will be further energized and inspired, while granted renewed hope for your own child. I am committed to helping you become better prepared to take on your daily parenting challenges.

That support starts today. I am talking to those of you who are sending your child off to school for the very first time. This right of passage can represent an emotional time of anticipation tempered by the sometimes harsh realities of navigating the world of public education. It's not for the faint of heart... but it is possible to do it well, with increased finesse and much less grief, with the right support!

So let's begin today with a letter that I wrote to my son on his first day of kindergarten in 1995 (when there was no Internet!). On that exciting and unnerving day, I penned honest words that represented a mother's deepest wishes for her child. These heartfelt words represented the beginning of my desire to realize some hard-won life dreams for both of us. Together, Eric and I walked many rocky miles. Achieving success along this dicey journey was never easy. It was always possible.

When I began this school journey with my second child, I had no idea how tough the challenges would be as we pursued Eric's right to a free and appropriate education- legal lingo that sounds so simple and pure and easy, but it was anything but. As I faced the education dragon head on in all my naivete, it was critical to our success that I reminded myself of two valuable facts. I loved my son with every ounce of my being, and I strongly believed in his right to pursue a good education. I knew that education would help Eric achieve his full potential, just as it does for all the other neighborhood children. Those unwavering beliefs set the necessary, solid foundation required for us to meet for all the challenges we faced throughout Eric's incredibly rewarding life, including in the public school setting.

I hope that my words of unconditional love for my son with cerebral palsy (seasoned with a ton of my innocence early on) will prove supportive to you. I encourage you to write about your own child's first day of school. If you want to share it with other parents who read my blog, email it to me (no attachements please!) at jappwinter@aol.com or JudyWinter.com. I'd love to read these letters, and I have no doubt others would, too.

Parent-to-parent networking is one of the greatest survival tools you will have in the years ahead- support it and access it whenever you can! You are now beginning a challenging, amazing educational journey. For the sake of your child and yourself, make wise choices. Through this blog and my public appearances and work as an author/speaker, I will continue to walk this rocky and rewarding journey with you and offer my support. I promise.

You are not alone in this special needs parenting adventure...that's a powerful realization. For additional inspiration, watch my upcoming interview on the Family Channel (check your local listings). I will appear as the featured guest on CBN's Living the Life on Wednesday, August 30 to discuss my book Breakthrough Parenting. Check it out!

Letter to Eric

Today, as you begin kindergarten, I'm writing you a letter.

It's a tradition that I began with your sister, Jenna, seven years ago.

The first day of school is a fall rite of passage, like brilliantly changing leaves, crisp evening air and earlier bedtimes. For our family, it also represents hard-won success. Some professionals believed the physical challenges of cerebral palsy would prevent you from learning in a regular school environment. Armed with cold, hard statistics, they warned of a life of segregation. But our family doesn't bank on statistics. We invest in the human stuff, like love, faith and hard work.

We chose a different road.

From the moment you first dramatically graced our lives, we've focused on your ability. In turn, you have exhibited a spirit of survival that astounds me. We've endured too many moments of grief and ignorance. Yet, what I remember most is your first smile and giggle, your first word and your success at a regular preschool.

You are a wise and handsome child, with inquisitive brown eyes that miss nothing. Much of your ability to positively impact others has come from their first impressions of you as a cute child. Your long and lanky frame holds just thirty hard-won pounds, but you are far from being a lightweight in this life. There have been critical hospital stays, invasive procedures and moments when your life was in peril. But today, we celebrate school and a powerful lesson in letting go.

Today, our family is no different.

In your new back-to-school outfit of GAP overalls, white Mickey-Mouse T-shirt and black Oshkosh shoes, you charm me. But I know there will be new challenges. The ground we tread is fresh, one that will present big challenges to some who are uncomfortable with inclusion, a word that promises equal educational opportunities for all children, as if we should need a word for such a human goal. Some people won't understand our fight and won't want to. Other skilled educators will use their training while also teaching from their hearts.

This will be a year of challenges. When people assume physical challenges include mental impairment, you'll be the first to forgive. I pray that others in this new world take time to discover how gifted and talented you really are. I'm exciting about meeting all those new friends who look past your wheelchair and into your eyes-and into your soul. I eagerly await book fairs, walking down school hallways and making red finger Jell-O at Christmas.

As your special bus disappears from sight, I'm a wreck. In a rare moment, I doubt. Are you ready? Am I ready? Your bus is equipped for wheelchairs. It separates you from your able-bodied classmates. Someday, that too must change.

You grin at me through the tinted bus window. You are more ready than I am.

As the bright, yellow school bus disappears from sight, as it did with Jenna many memories ago, I'm overcome with emotion. Safely inside, I release the tears of far too many moments with those blind to your value because of your disability. But my tears of frustration and anger can't help but give way to the unconditional love I have for the child who has been my greatest life teacher.

As you begin this new journey, son, you must grow in independence. But dad and I will be beside you to champion the dreams that others try to tarnish. Forgive them.

On this exceptional day, words can only begin to express what I feel in my heart, Eric Richard Winter. Thank you for coming into my life and teaching me more than I ever thought I had to learn. You are a great teacher...

With much love,
Mom
p.s. Have a wonderful first day in kindergarten!

Catching Up

I'm back!!!

After spending nearly five months of meeting book release commitments that kept me on the road instead of on my tush at my computer, I'm back, at least for a little while, and ready to resume blogging on a more regular basis! Thanks to all of you who have continued to check my blog with determination and dedication, searching for brand new stuff (so sorry!). Here it is! 'Just in time for my back-to-school/education ramblings. You won't want to miss that. (next blog, I promise!).

The past four months have been a whirlwind of reviews, media interviews, book signings for Breakthrough Parenting for Children with Special Needs: Raising the Bar of Expectations (JudyWinter.com). And I've been sending thanks and books to a lot of deserving people. Plus, I have worked hard to answer all those terrific emails from many appreciative readers. Thanks to each one of you for taking time to share your kudos, heartfelt stories and wonderful amazon reviews (which do help sell books...). I love reading your words; they help fuel my passion for my work, and for my life. They give me hope for the future of our kids, and I will be drawing from them as I write in the weeks ahead.

I must admit to also indulging in more than a few much-needed vacation days (I especially love Lake Michigan!), while also spending some cherished time reflecting on life with my son. Memories are everywhere, and they are there every single day...I cherish these reminders of life with my son, it is sacred time that I plan to protect a bit more ferverently now that the initial book release demands have eased a bit.

The human side of me needs time for tears and introspection, even more than the writer in me requires time for penning emotional words and ramblings. Grief doesn't end because you voice your loss to the world online or write about it in a book. A mother's grief is very powerful indeed...it isn't something you get over, ever. I will blog about the reality of facing and surviving the death of a child in greater detail in my emotional ramblings to come. Perhaps it will help another parent hold on...

So much has been happening in the world these past few months, not just concerning special needs, and I have opinions on almost all of it. But let's get back on track first with some of my professional highlights from the past few months. In short, here's some of what I've been doing instead of blogging!

-Seeing Breakthrough Parenting embraced by both families and the professional market has been incredible. I believe strongly that we must work together well if all children are to have better lives! The adversarial stuff (all the heightened drama we help create) needs to end. The energy can be better spent on great solutions that help kids succeed.

-Appearing on major television shows to talk about my book (great exposure for the cause), including the Hour of Power at the Crystal Cathedral in Garden Grove, California- that place is a stunning piece of architecture with beautiful, healing gardens, and with some pretty terrific staff/volunteers on board. My appearance on CBN's Living the Life (Terry and Lousie you are terrific!) will air August 30th-check your local listings (the Family Channel).

-Being interviewed by a lot of fun, skilled broadcasters from a bunch of radio stations across the country, including Steve Cochran from WGN, the Voice of Chicago! Steve talked about his own lessons growing up as the sibling of a brother with learning disabilities, and he was not the only radio/tv host to admit to having personal experience with special needs issues. Thanks Steve for your honesty and the valuable air time! People like you help me take the shame out of talking about this subject publicly! On behalf of families everywhere-- thank you!!

-Being reviewed in Parenting magazine, the Chicago Tribune, and Health News Digest among mentions in many other press was/is terrific.

So was:

- Receiving a letter of support for Breakthrough Parenting from Maria Shriver, First Lady of Califonia!

-Meeting so many terrific families and lots of cute kids at my book signings.

-Finding my book on the shelves in the major bookstores in major cities across the country, including: LA, Washington D.C., Philly, Detroit, often in the general parenting section! Finding BP face out on the top shelf in the 5th Avenue Barnes and Noble in NYC was a writer's literary (and a proud mom's)dream come true..

-Receiving the Chief Everything Officer Award in Community Outreach from AOL/Dove at a luncheon at famed Gotham Hall in New York City!

-Receiving that award from Felicity Huffman, and meeting keynote speaker Marlee Matlin- one of my heroes. Both women were incredibly charming, spirited and friendly! Cute, too... I've got the photos to prove it-check my website.

-Private meeting with Tim Shriver, Chairman of Special Olympics in July in Washington D.C. during the heat wave! What a gracious and inspiring champion of those with special needs!

-Being asked to speak at several professional conferences beginning this fall...
I repeat, we must bridge these challenged relationships and work together for the sake of kids-- it is my loud new mantra.

I am leaving out many other highlights, but you get the drift of what's been happening to me these past few months. Now it's your turn: write me jappwinter@aol.com and update me on your lives. I will begin rambling again in earnest about tough special needs issues next entry (this week I promise).

Be sure to enjoy what is left of summer. Although I admit that I am ready for Fall and sweater weather. This hot, humid summer has turned me into a night creature.

Now, take a deep breath, because school will start again soon. I'm going to try to make this year a bit less stressful for you. If you haven't already done so, be sure to get a copy of my book. It includes lots of empowering tips/information on facing school issues, and the success stories of other families to show you what's possible.

But before school starts, there is still time to take your kids outside and gently catch lighting bugs tonight (the simplest pleasures are free)! It has been a bumper year for the enchanting little twinklers! Be sure to set them free when you are done so someone else can enjoy nature's magic...