I am well aware that we just celebrated Father's Day 2006 two weeks ago, complete with gifts that no doubt included a wide array of carefully chosen, colorful new ties, and an assortment of cool new outdoor grills as tokens of our appreciation for the dads in our kid's lives (we could be a bit more creative with our gifts people, but that's for another blog, another day).
The good news is that I have a belated gift to offer up to these hard-working men, one that recognizes and honors terrific dads of children with special needs everywhere- one that will hopefully inspire them to be all they can be. And I simply must ramble on about it.
If you don't know about Team Hoyt, the amazing father and son whose remarkable tight bond has been fueled by years of running marathons and completing triathlons together, I'm going to change that fact. In recent years, this father and son have been honored in the press all over the world, including in Sports Illustated. But more importantly, the Hoyt duo continues to leave lasting imprints on people's minds and hearts, by modeling the power of a parent's unconditional love, a parental commitment that focuses on ability and possibility, not the limitations of a disability.
Dick and Rick Hoyt call Massachusetts home, but the world has become their athletic turf. The story of these two amazing athletes is made even more remarkable by the fact that Rick Hoyt has cerebral palsy and is a wheelchair user. But that hardly defines his value to the world. Rick is a graduate of Boston University, where he is also employed. He's a spunky and determined man, much like his dedicated father, who gives new meaning to parent involvement and to being a dad. Rick Hoyt is a chip off the old genetic block... and that stellar pedigree has proved golden.
For more than 25 years Rick's father, Dick, a retired a lieutenant colonel in the air nation guard,has served as Rick's feet and arms. Together, they have completed 24 Boston Marathons, and countless triathlons. Today, they are known as Team Hoyt, with a lofty mission to integrate the physically challenged into everyday life. Dick and Rick Hoyt have lived this reality; they know it's possible. They have set a new bar for the rest of us. None of the old stereotypical excuses offered here. For more about their efforts, check out: www.teamhoyt.com.
Because of my son, Eric, who had cerebral palsy and passed away in 2003 at age 12, I believe in living, breathing heroes. Team Hoyt fits that bill. You can learn more about their story and become inspired in your own life. It's impossible not to be lifted up at least for a little while by the Hoyt's rock-solid commitment to athletic pursuits and to life success, no matter how tough your day has been. Focus on what is possible in your child's life, and do everything you can to make it happen.
Another clear message you can't overlook when talking about Team Hoyt is this: Dads matter to their kids, big time. Just ask Rick Hoyt. His dad (and mom) believed in his value right from birth, and they never looked back. (For a similar story of the power of parental love, check out more of my life with my son Eric at JudyWinter.com or in my book Breakthough Parenting for Children with Special Needs: Raising the Bar of Expectations).
I hope you have a life changing week- one that helps builds your child's self esteem in ways that only a dad can! (Hint: Spend some fun one-on-one time together, and yes, dads, this can include the pursuit of sports). Just remember Dick and Rick Hoyt...
Friday, June 30, 2006
Monday, June 19, 2006
Happy Father's Day!
This is a quick entry and a bit late, but I must say a quick Happy Father's Day to all you terrific dads out there! Too often the efforts of dads can be overshadowed by all those great moms in our kids lives- but your role is just as important to your kids. So big thanks for all you do- and if you aren't involved in your children's lives like you should be, take a new look at your role and step up your game. Your children will thank you for it- and they do deserve your best effort.
Remember that parenting is your responsibility, too.
This week, spend some one-on-one time with your children and give 'em all you got, especially actions that feed their self esteem and create confident, healthy children (think bear hugs, kind words, laughter) or go see that great new movie CARS together. They will remember these great moments forever......and so will you.
Remember that parenting is your responsibility, too.
This week, spend some one-on-one time with your children and give 'em all you got, especially actions that feed their self esteem and create confident, healthy children (think bear hugs, kind words, laughter) or go see that great new movie CARS together. They will remember these great moments forever......and so will you.
Monday, June 12, 2006
Life as a Writer
If you are one of those cool people who has been reading my blog regularly bless you! No doubt, you're already hip to the reality that my entries are rarely brief-- but they usually stay on point, (well that might be a stretch at times). Fact is, I have rarely been called a writer (or speaker) of few words, unless an unyielding editor commands it.
But today, I was overcome by the need to make a quick, short entry to say just one thing, and I dropped everything else that demanded my attention to focus on getting these words out to accomplish that mission! (You should see the mess of papers on my office floor that I gotta go pick up now and refile! Geez!). I was suddenly possessed, with the need to shout from the mountaintop (okay from the second floor of my house) some words that I'm pretty sure Oprah would define as coming from my psyche as part of a grand lighbulb moment, IF I was sitting on the couch with her.. (Oprah, please call me!)
I love being a writer!
I love meeting all those people that my avocation has allowed me to meet. I love the fact that so many willing and eager subjects (and yes, even the naive) share the deepest part of their souls with me without even knowing who the heck I am or without asking for my driver's license or firstborn. After all these years, I am still amazed that total strangers trust me to retell their stories well, with sensitivity and fairness and accuracy, and assume that I will honor all those annoying off-the-record comments that some interviewees simply can't seem to live without. I love that in this tabloid day and age, people are still that trusting.
I LOVE the fact that I can spell without using spellcheck! Something that is freeing, especially since spellcheck is too often wrong. Kudos to my high school college English teacher for training me well, even though I did not appreciate her wisdom or red pen at the time. Thanks Judy Faber!
I love the fact being a writer grants me permission to take the time needed to really listen to someone's words in order to uncover the life jewels that they have been guarding tightly for years, those emotional tales housed deep within their gut and locked away in their memories. These are stories that rarely see daylight because we live in an incredible fast-paced world that finds itself too busy to really listen to them. I love the fact that I get the honor of bringing such stories to light.
In my work, I serve as a bridge that connects the public to some remarkably human life stories, and as a result, sometimes lives are forever changed. Wow!
I've been so immersed in the publication and speaking and special needs advocacy process these past few years, that I haven't had much time to just sit back and really reflect on why I love what I do, and how the heck I got to this point in my career. But today I must do it!
I love to hear people's stories, and I love words! And I am especially fond of those stories others seem to think aren't worth their time and energy. I love tales of the downtrodden, championing the underdog, and all that human interest stuff. You can have sports and politics and celebrities. There's room for us both, cause I ain't interested in your turf. Doubt I ever will be.
The power of the written word continues to amaze me. When used well, language, whether written or spoken (I love both) has the remarkable ability to change lives, foster vital discussion even on the most sensitive issues, bring warring factions together, serve as a lifelife, provide hope and inspiration and thanksgiving, help turn people's toughest days around, and allow us to recite powerful, hope giving prayer during times of personal devastation. Words can help end wars.
They can do that and so much more.. As a writer, I can't even put all the gifts into words!
So for today, I'm not writing about special needs or helping your child be the best he or she can be (don't worry, I'll return to it in my next blog). Today, I just needed to ramble on and pay tribute to the incredible profession that helps me do this work well by repeating the simple proclamation that first began this ramble, which I admit has now gone on a bit longer than I first envisioned.
I love what I do. I love being a writer. I love telling your stories.
It's one cool gig....
I hope you love what you spend most of your life doing, too. If not, it's never too late.
I should know! I've now got the clips and shiney new author's book to prove it!
Tip of the week! Spend some time doing what you really love, not cause you have to, but because you simply must. You'll be better for it.
But today, I was overcome by the need to make a quick, short entry to say just one thing, and I dropped everything else that demanded my attention to focus on getting these words out to accomplish that mission! (You should see the mess of papers on my office floor that I gotta go pick up now and refile! Geez!). I was suddenly possessed, with the need to shout from the mountaintop (okay from the second floor of my house) some words that I'm pretty sure Oprah would define as coming from my psyche as part of a grand lighbulb moment, IF I was sitting on the couch with her.. (Oprah, please call me!)
I love being a writer!
I love meeting all those people that my avocation has allowed me to meet. I love the fact that so many willing and eager subjects (and yes, even the naive) share the deepest part of their souls with me without even knowing who the heck I am or without asking for my driver's license or firstborn. After all these years, I am still amazed that total strangers trust me to retell their stories well, with sensitivity and fairness and accuracy, and assume that I will honor all those annoying off-the-record comments that some interviewees simply can't seem to live without. I love that in this tabloid day and age, people are still that trusting.
I LOVE the fact that I can spell without using spellcheck! Something that is freeing, especially since spellcheck is too often wrong. Kudos to my high school college English teacher for training me well, even though I did not appreciate her wisdom or red pen at the time. Thanks Judy Faber!
I love the fact being a writer grants me permission to take the time needed to really listen to someone's words in order to uncover the life jewels that they have been guarding tightly for years, those emotional tales housed deep within their gut and locked away in their memories. These are stories that rarely see daylight because we live in an incredible fast-paced world that finds itself too busy to really listen to them. I love the fact that I get the honor of bringing such stories to light.
In my work, I serve as a bridge that connects the public to some remarkably human life stories, and as a result, sometimes lives are forever changed. Wow!
I've been so immersed in the publication and speaking and special needs advocacy process these past few years, that I haven't had much time to just sit back and really reflect on why I love what I do, and how the heck I got to this point in my career. But today I must do it!
I love to hear people's stories, and I love words! And I am especially fond of those stories others seem to think aren't worth their time and energy. I love tales of the downtrodden, championing the underdog, and all that human interest stuff. You can have sports and politics and celebrities. There's room for us both, cause I ain't interested in your turf. Doubt I ever will be.
The power of the written word continues to amaze me. When used well, language, whether written or spoken (I love both) has the remarkable ability to change lives, foster vital discussion even on the most sensitive issues, bring warring factions together, serve as a lifelife, provide hope and inspiration and thanksgiving, help turn people's toughest days around, and allow us to recite powerful, hope giving prayer during times of personal devastation. Words can help end wars.
They can do that and so much more.. As a writer, I can't even put all the gifts into words!
So for today, I'm not writing about special needs or helping your child be the best he or she can be (don't worry, I'll return to it in my next blog). Today, I just needed to ramble on and pay tribute to the incredible profession that helps me do this work well by repeating the simple proclamation that first began this ramble, which I admit has now gone on a bit longer than I first envisioned.
I love what I do. I love being a writer. I love telling your stories.
It's one cool gig....
I hope you love what you spend most of your life doing, too. If not, it's never too late.
I should know! I've now got the clips and shiney new author's book to prove it!
Tip of the week! Spend some time doing what you really love, not cause you have to, but because you simply must. You'll be better for it.
Sunday, June 04, 2006
Highlights of the Crystal Cathedral
First, I must apologize for going so long between blogs. Naughty me! But in my own defense, my schedule has left me slightly crazed (huge understatement). It has been filled with back-to-back travel. In fact, everytime I hear an airplane overhead now, I think I'm in an airport somewhere, and quickly remove my shoes preparing to go through an imaginary security screening!
My life as a newly published, slightly starry-eyed author has also been filled with lots of media interviews and book signings. Unlike many authors, I love book signings because I get to talk to lots of great people. I always come away with lots of food for creative thought, an especially important benefit for non-fiction writers. Plus, after trying to finish my book in record time in relative solitary confinement in my home office, I started feeling like the groundhog. Fact is, I'm thrilled to be out socializing again- and seeing daylight!
I got to attend one really cool awards ceremony in New York City to accept my Chief Everything Officer (CEO) Award in Community Outreach from AOL and Dove (more about that biggie in my next blog!), where I met Felicity Huffman and Marlee Matlin. And yes, that was cool. You can read more on my website at www.JudyWinter.com.
So I have landed home for at least a little while, and in between responding to emails, new media requests and cleaning my I've-been-out-of-town-a-while clutter, I am eager to share with you some of my incredible experiences of the past few weeks. That includes some of the amazing opportunities that I have had to speak with (or should I say listen to?) many wonderful people from across the country who shared with me their stories of children with special needs with great honesty and emotion.
Many of their words were fueled by gratitude and unconditional love for their children, in light of experiencing some very real hardships. I am still trying to answer all the resulting emails. If you sent me one, please be patient, I will reply sooner or later; that's a promise. And I work overtime to meet my promises.
More than one person has shared their tears of frustration over the weight of the responsibilty they carry each and every single day, often without adequate support or kudos. Tears fell on my books at more than one book signing as people finally felt permission to lighten their emotional load and tell me in no uncertain terms the reality of their challenged lives, knowing that I understood and wasn't about to pass judgement. I held hands with people more than once; in many cases, hugs were a given.
At times, I felt like I was part of a special needs parenting revival! And while I wish my presence, or touch, or words could cure all the pain I witnessed, I hold no such power. I can only hope that my own honest, caring words may in some small way soothe and ease some of the pain that others feel, while providing some inspiration and needed direction to help these families meet their challenges well and move forward well.
In light of the tough demands facing many people who took the time to welcome me, most of these same individuals also graciouly took time to thank me for writing the words that they say they have been waiting to hear for far too long- words that loudly proclaim that their children DO matter, that they do have value, as do their parents. One mom wrote: "You are the hug that I have been waiting three years for..."
The work I do is humbling, and I take both the responsibility, and this honor, very seriously...It is an honor to serve this incredible population.
This mom's words helped sum up why I wrote Breakthrough Parenting for Children with Special Needs. Yet, those same words also left me feeling quite sad, because it should not have taken that long for someone to validate this woman, her child, and her hard work as a parent. That reality is just not okay with me, and I will continue to do everything I can to help change it, if only by creating greater societal awareness of her daily struggles and those of millions of others like her. I will be that honest, clear and relentless voice for her and for many others, make no mistake about that. I will not sit silently by as this population continues to struggle day in and day out to realize the simplest of human rights.
During my travels, I also have had the incredible honor of speaking with more than one person with special needs who far exceeded the odds cited all around them; in most cases, these people attributed their success to a loving, dedicated and gutsy parent, often times a mother. And YES, I also met my share of great dads committed to raising their kids well, too. Like our kids, too often these dads don't get enough press or credit for the great work they do. Thanks, dads! You matter, too! And I've got some cute photos of adoring dads with their beautiful little girls at a couple of my book signings to prove it.
All of these encounters, whether in person, or through email or by phone inspire me and energize me to continue the tough but important work that I have taken on. It's no easy feat to fight these battles and create awareness, especially as I continue to work through the death of my own son who fuels my passion for this cause and these kids. I will be sharing more of these encounters with others (with permission!) in my rambles yet to come this summer. But it's too much to share all at once...I'm still processing the whirlwind, and the sacred blessings. I do feel incredible blessed to have the skills, experiences, stories and venues to speak effectively to this issue.
I do want to start this catch-up phase with a brief summary of my incredible experience as the May 14th Mother's Day guest for the Hour of Power at the Crystal Cathedral in Garden Grove, California. The wonderful opportunities I have had to put my book Breakthrough Parenting for Children with Special Needs: Raising the Bar of Expectations before major audiences (thanks to some great media) have left me both humbled, honored and ultimately energized to continue to take the message of the value of this population to as many venues and stages as possible. My goal is to get the word out, stir some things up and create discussion and change that will change children's lives. Media interviews help an author do just that.
What I found during my appearance at the Crystal Cathedral (and in the planning that precedes it weeks before) was an incredibly warm, accepting and welcoming group of people that helped create for me one terrific experience that I will never forget. My belief is that if every church was this welcoming, church attendance and long-term membership would be growing not declining.
Everyone we came into contact with at the Hour of Power truly seemed to love what they were doing, who they were doing it for, and why they were doing it (for God). There was a family atmosphere backstage, with lots of warm greetings, hugs and laughter. Many of these people are church volunteers who during the rest of the week work in the nearby entertainment industry as makeup artists, directors, producers and musicians. The staging director had recently completed work on 'Memoirs of a Geisha', yet he told that for more than 20 years he had been volunteering the production of the program and considered it some of the most rewarding work he has done to date. And to think that so many of us are today driven by celebrity and fame... the rewards here are more concrete, more lasting, of more value.
Dr. Robert H. Schuller's long-time driver told me about the many wonderful program guests he had had the pleasure to meet over the years, including his personal favorite, former Soviet President, Mikhail Gobachev.
Because of this internationally-reknowned ministry and place, many of these people have rubbed elbows with some of the most famous or influential people of the times, yet they treated my husband and me as if we were the most important guests they had ever encountered.
I was thrilled to share my message, my passionate vision of special needs parenting with this audience (you can view that interview by going to my website JudyWinter.com and scrolling down to the Crystal Cathedeal interview link on my intro page). It was a wonderful moment. Faith has played a key role in my ability to survive my life challenges, including the death of my child. So to be in that beautiful place on Mother's Day to share my message about my son, and others with special needs, with a worldwide audience was something for which I will always be grateful. And all the great people I met at the book signings held after each service, touched me deeply and left lasting imprints on my heart and soul.
The people I had the pleasure of working with for this event are some of the finest individuals I've ever met. From the beginning of my contact and planning (thanks Maria and Erica!!!), these individuals recognized the value of my work and message and were dedicated to helping me share this message on this international stage in the most positive and classy way possible. Mission accomplished, and then some.
So to everyone at the Crystal Cathedral, thank you for all you have done and continue to do to help change people's lives throughout the world, including my own, by sharing powerful messages of hope and faith- valuable messages to those challenge by special needs! My heartfelt thanks and deepest gratitude to you all for sharing your time, energy, and support of my work with me. You have touched me beyond words...
Now, I want to know what the rest of you have you been doing to improve the life of a child while I've been on the road. So please write me and share all the good stuff. 'Cause then I can pass it on to my readers, and motivate them to do the same, plus it warms my heart to hear your stories. Think snowball effect, where the end result is the motivation to create better lives for kids! It's one natural and productive high...
In the meantime, savor the sensory gifts of summer! 'Cause those little gems of nature will sneak away again all too soon...
My life as a newly published, slightly starry-eyed author has also been filled with lots of media interviews and book signings. Unlike many authors, I love book signings because I get to talk to lots of great people. I always come away with lots of food for creative thought, an especially important benefit for non-fiction writers. Plus, after trying to finish my book in record time in relative solitary confinement in my home office, I started feeling like the groundhog. Fact is, I'm thrilled to be out socializing again- and seeing daylight!
I got to attend one really cool awards ceremony in New York City to accept my Chief Everything Officer (CEO) Award in Community Outreach from AOL and Dove (more about that biggie in my next blog!), where I met Felicity Huffman and Marlee Matlin. And yes, that was cool. You can read more on my website at www.JudyWinter.com.
So I have landed home for at least a little while, and in between responding to emails, new media requests and cleaning my I've-been-out-of-town-a-while clutter, I am eager to share with you some of my incredible experiences of the past few weeks. That includes some of the amazing opportunities that I have had to speak with (or should I say listen to?) many wonderful people from across the country who shared with me their stories of children with special needs with great honesty and emotion.
Many of their words were fueled by gratitude and unconditional love for their children, in light of experiencing some very real hardships. I am still trying to answer all the resulting emails. If you sent me one, please be patient, I will reply sooner or later; that's a promise. And I work overtime to meet my promises.
More than one person has shared their tears of frustration over the weight of the responsibilty they carry each and every single day, often without adequate support or kudos. Tears fell on my books at more than one book signing as people finally felt permission to lighten their emotional load and tell me in no uncertain terms the reality of their challenged lives, knowing that I understood and wasn't about to pass judgement. I held hands with people more than once; in many cases, hugs were a given.
At times, I felt like I was part of a special needs parenting revival! And while I wish my presence, or touch, or words could cure all the pain I witnessed, I hold no such power. I can only hope that my own honest, caring words may in some small way soothe and ease some of the pain that others feel, while providing some inspiration and needed direction to help these families meet their challenges well and move forward well.
In light of the tough demands facing many people who took the time to welcome me, most of these same individuals also graciouly took time to thank me for writing the words that they say they have been waiting to hear for far too long- words that loudly proclaim that their children DO matter, that they do have value, as do their parents. One mom wrote: "You are the hug that I have been waiting three years for..."
The work I do is humbling, and I take both the responsibility, and this honor, very seriously...It is an honor to serve this incredible population.
This mom's words helped sum up why I wrote Breakthrough Parenting for Children with Special Needs. Yet, those same words also left me feeling quite sad, because it should not have taken that long for someone to validate this woman, her child, and her hard work as a parent. That reality is just not okay with me, and I will continue to do everything I can to help change it, if only by creating greater societal awareness of her daily struggles and those of millions of others like her. I will be that honest, clear and relentless voice for her and for many others, make no mistake about that. I will not sit silently by as this population continues to struggle day in and day out to realize the simplest of human rights.
During my travels, I also have had the incredible honor of speaking with more than one person with special needs who far exceeded the odds cited all around them; in most cases, these people attributed their success to a loving, dedicated and gutsy parent, often times a mother. And YES, I also met my share of great dads committed to raising their kids well, too. Like our kids, too often these dads don't get enough press or credit for the great work they do. Thanks, dads! You matter, too! And I've got some cute photos of adoring dads with their beautiful little girls at a couple of my book signings to prove it.
All of these encounters, whether in person, or through email or by phone inspire me and energize me to continue the tough but important work that I have taken on. It's no easy feat to fight these battles and create awareness, especially as I continue to work through the death of my own son who fuels my passion for this cause and these kids. I will be sharing more of these encounters with others (with permission!) in my rambles yet to come this summer. But it's too much to share all at once...I'm still processing the whirlwind, and the sacred blessings. I do feel incredible blessed to have the skills, experiences, stories and venues to speak effectively to this issue.
I do want to start this catch-up phase with a brief summary of my incredible experience as the May 14th Mother's Day guest for the Hour of Power at the Crystal Cathedral in Garden Grove, California. The wonderful opportunities I have had to put my book Breakthrough Parenting for Children with Special Needs: Raising the Bar of Expectations before major audiences (thanks to some great media) have left me both humbled, honored and ultimately energized to continue to take the message of the value of this population to as many venues and stages as possible. My goal is to get the word out, stir some things up and create discussion and change that will change children's lives. Media interviews help an author do just that.
What I found during my appearance at the Crystal Cathedral (and in the planning that precedes it weeks before) was an incredibly warm, accepting and welcoming group of people that helped create for me one terrific experience that I will never forget. My belief is that if every church was this welcoming, church attendance and long-term membership would be growing not declining.
Everyone we came into contact with at the Hour of Power truly seemed to love what they were doing, who they were doing it for, and why they were doing it (for God). There was a family atmosphere backstage, with lots of warm greetings, hugs and laughter. Many of these people are church volunteers who during the rest of the week work in the nearby entertainment industry as makeup artists, directors, producers and musicians. The staging director had recently completed work on 'Memoirs of a Geisha', yet he told that for more than 20 years he had been volunteering the production of the program and considered it some of the most rewarding work he has done to date. And to think that so many of us are today driven by celebrity and fame... the rewards here are more concrete, more lasting, of more value.
Dr. Robert H. Schuller's long-time driver told me about the many wonderful program guests he had had the pleasure to meet over the years, including his personal favorite, former Soviet President, Mikhail Gobachev.
Because of this internationally-reknowned ministry and place, many of these people have rubbed elbows with some of the most famous or influential people of the times, yet they treated my husband and me as if we were the most important guests they had ever encountered.
I was thrilled to share my message, my passionate vision of special needs parenting with this audience (you can view that interview by going to my website JudyWinter.com and scrolling down to the Crystal Cathedeal interview link on my intro page). It was a wonderful moment. Faith has played a key role in my ability to survive my life challenges, including the death of my child. So to be in that beautiful place on Mother's Day to share my message about my son, and others with special needs, with a worldwide audience was something for which I will always be grateful. And all the great people I met at the book signings held after each service, touched me deeply and left lasting imprints on my heart and soul.
The people I had the pleasure of working with for this event are some of the finest individuals I've ever met. From the beginning of my contact and planning (thanks Maria and Erica!!!), these individuals recognized the value of my work and message and were dedicated to helping me share this message on this international stage in the most positive and classy way possible. Mission accomplished, and then some.
So to everyone at the Crystal Cathedral, thank you for all you have done and continue to do to help change people's lives throughout the world, including my own, by sharing powerful messages of hope and faith- valuable messages to those challenge by special needs! My heartfelt thanks and deepest gratitude to you all for sharing your time, energy, and support of my work with me. You have touched me beyond words...
Now, I want to know what the rest of you have you been doing to improve the life of a child while I've been on the road. So please write me and share all the good stuff. 'Cause then I can pass it on to my readers, and motivate them to do the same, plus it warms my heart to hear your stories. Think snowball effect, where the end result is the motivation to create better lives for kids! It's one natural and productive high...
In the meantime, savor the sensory gifts of summer! 'Cause those little gems of nature will sneak away again all too soon...
Saturday, May 13, 2006
Happy Mother's Day!
Mother's Day is a bittersweet day for me, so my message on the subject this year is brief. While I celebrate the honor and remarkable blessings of having filled this sacred role for more than twenty one years, the loss of my son is still quite fresh, and leaves me still searching for some peace on this emotional, Hallmark-card kind of holiday.
I will say this loudly-- thank God for my beautiful daughter who let me practice parenting on her before I was challenged by the special needs of my son. She was, and remains a terrific and patient teacher. Like her brother, her gifts are many, too. I am blessed to have her in my life.
Now, to all those moms who work so hard each and every day trying to keep all the spit balls in the air while also serving as domestic goddess, teacher, pediatrician, counselor, lover, friend, cook, fashion stylist, chauffer, cheerleader and spiritual leader-- while wiping all those weird snotty little green noses, I salute you. You are simply amazing!
Do you realize that if each and every one of us would stand up for a child and let our voices be heard loudly and with no apologies for our volume, we could indeed change the world? That's how important and valuable the work mothers do each and every day of their lives is.
You have earned the day's kudos and so much more...our future truly is in gentle, loving, nurturing, strong hands. Wow! What a responsibilty.
So be sure to take a break today whenever you can. 'Cause tomorrow it's back to molding the world's future, one child at a time-- that's one big job for no paycheck, health insurance or retirement plan. So you're gonna need at least a twenty-minute nap today to face it for another 364 days--and some lovely, fragrant flowers from a real florist would be nice, too! And yes, you can buy them for yourself if others come up short. Today, you have earned the right to honor yourself first for once. But like all good things in life, this day will go by all too quickly, so capture the magic while you can.
Happy Mother's Day!!!!!
I will say this loudly-- thank God for my beautiful daughter who let me practice parenting on her before I was challenged by the special needs of my son. She was, and remains a terrific and patient teacher. Like her brother, her gifts are many, too. I am blessed to have her in my life.
Now, to all those moms who work so hard each and every day trying to keep all the spit balls in the air while also serving as domestic goddess, teacher, pediatrician, counselor, lover, friend, cook, fashion stylist, chauffer, cheerleader and spiritual leader-- while wiping all those weird snotty little green noses, I salute you. You are simply amazing!
Do you realize that if each and every one of us would stand up for a child and let our voices be heard loudly and with no apologies for our volume, we could indeed change the world? That's how important and valuable the work mothers do each and every day of their lives is.
You have earned the day's kudos and so much more...our future truly is in gentle, loving, nurturing, strong hands. Wow! What a responsibilty.
So be sure to take a break today whenever you can. 'Cause tomorrow it's back to molding the world's future, one child at a time-- that's one big job for no paycheck, health insurance or retirement plan. So you're gonna need at least a twenty-minute nap today to face it for another 364 days--and some lovely, fragrant flowers from a real florist would be nice, too! And yes, you can buy them for yourself if others come up short. Today, you have earned the right to honor yourself first for once. But like all good things in life, this day will go by all too quickly, so capture the magic while you can.
Happy Mother's Day!!!!!
Saturday, April 29, 2006
Sacred Self Care--Permission Granted!
Whenever I run across a valuable and inspiring resource penned by women, one designed to help other women improve their lives, I cannot wait to pass it on. This is one of those times.
Throughout my life, the timeless messages of Julie Cameron, Anne Morrow Lindberg, Maya Angelou and others have added fire to my creative soul. So I’m always on the lookout for new writers whose talent for written expression inspires me and motivates me to be the best darn human being I can be. Like most people, I am a continual work in progress. No big surprise there. As long as we are still breathing, there is room for us to discover more about ourselves and to grow and change in amazing ways. Always.
So I’ve got a new name to add to my list of those who challenge me to pursue new personal heights, and I 'm going to share it with all you incredibly hard-working moms of children with special needs (and those without). I’ve just discovered the terrific works of author Joan Anderson. Like the sacred words of Julia Cameron, a gifted champion and nurturer of the writer’s sometimes fragile psyche and soul, Anderson’s book holds the power to inspire women to take powerful action to improve their lives.
This talented author gives women the permission they desperately seek, (yet rarely find outside themselves—hint: stop looking there!), to take time out for personal reflection and renewal. Think of this read as an invigorating blood transfusion for a tired mother’s soul (chicken soup alone won't cut it!).
Anderson challenges our gender, one extremely effective at caretaking everyone but themselves, to take time out to reconnect with who they once were, and still may be behind all the societal masks and demanding female roles they have taken on to the nth degree. (I’m exhausted just writing about the subject!). Anderson invites us to ditch the wobbly, painful stilettos (the masks we wear each day) and get real by giving women permission to reclaim their own lives-- and wear more sensible shoes as they navigate life’s rocky emotional terrain.
I came across this author’s important works during a much-needed day away from demands as a new author. As I prepare to face some especially important whirlwind weeks involving book promotion and media appearances, I came across Anderson’s most recent work: A Weekend to Change Your Life: Find Your Authentic Self After A Lifetime of Being All Things to All People. I found it while leisurely browsing in a bookstore. (Haven’t done that far too long).
Intrigued by the title (book titles do matter!), I began reading her words before leaving the bookstore. I couldn’t stop! With my discerning writer’s eye, that's something that rarely happens. With my increasing professsional demands, I must connect with a book immediately to even consider purchasing it. Anderson's book had me reading before I left the parking lot.
This particular title is a semi workbook/companion guide to Anderson’s bestselling book A Year by the Sea (I'm drawn to titles involving the word SEA!). I promptly got myself a copy of that book, too. I keep going back and forth between the two titles, savoring every single word on each page, finding each valuable reflection and insight a gift. I’m stopping only long enough to blog these words, while forgiving myself for going two weeks without a new entry! The books are working already.
Anderson’s insightful words offer a particularly timely statement for my own life. I have just finished a huge personal goal of becoming an author of a book about a topic about which I am passionate- improving the lives of children with special needs, and the lives of their families. Becoming published by traditional publishing channels is no easy feat these days and it gets harder each year. Plus, I’m still dealing with the grief over the death of my son in 2003.
Reality check. I am at one giant life crossroad. And that ever present nagging question What now? that often faces us gals once we climb one big mountain (or finish a big ‘ol stinkin pile of dirty laundry), is already chanting in my brain. Every so often, I tell it to chill out! Anderson challenges us to say that more often, using stronger language.
It’s just like mothers to barely take time to catch their breath, validate their achievements (if we do that at all) and say good job! before they take on another big task-- all the while wondering what we must do next in our never ending quest to prove our value and our self worth and mommy stock. I’m not going to rant about how we got ourselves into this role-playing mess, not today anyway. But here’s Anderson suggests a novel way to help you try to find your way out of it.
How about doing nothing?
How about taking time needed to retreat into silence in order to rediscover who you really are, to rediscover what moves you, makes you cry, laugh or love passionately and celebrate you? How about taking time to reflect on your own greatness as a human being outside of all these other roles you wear, in order to rediscover the terrific person that lies beyond the laundry, homemade lasagna and PTA carnival chair title?
"No time!" you shout!
Anderson challenges that protective chant, too, by citing all the hours, minutes, microseconds in a day (some of which we clearly waste), before challenging you to find some of that time just for you (she did this to an audience member live on Oprah!). Anderson has a critical point to make. We have become a nation of burned out moms, speeding by life moments in gas gulping SUVs. Our children are watching us closely, and they are stressing out, too. We are making some crazed choice to stay on this treadmill of parenting madness.
Anderson works helps us understand that we can and must change this insanity.
This author is right on, sisters! And we should be paying close attention, because ultimately our children are paying the price of our refusal to take care of ourselves and one day, (if we have parented well and can find additional resources where needed), most of our kids will leave us to take flight and create their own worlds in their own space. Then what?
We could all benefit from a slight slow down and reflection, don’t ‘cha think?
While the meat of Anderson’s words are designed to help women in mid-life transition rediscover who they are beyond the exhausting roles of wife, mother, employee, etc. I find her valuable message of self care for women especially powerful for mothers of children with special needs. When it comes to running the parenting race, these women are triathletes.
Like other moms, they often give until they have nothing left to give, but the heightened intensity of special needs parenting demands make these moms the true heros in the non-stop motherhood race. Finding time away to these moms isn’t as simple as it is to most. It requires extra careful, thoughtful planning, and usually great child care, a very supportive husband, or priceless (and hard to come by) respite care. The good news is that where there is a will (and a great need for life-impacting change), there is nearly always a way.
Permission to take care of YOU (and time away from parenting) granted!
Take time out for you! That’s Anderson’s battle cry, mine, too. I included self care (for dads, too!) in my book Breakthrough Parenting for Children with Special Needs: Raising the Bar of Expectations (the book you need besides Andersons!), because I believe it is a critical component in the special needs family equation. There’s a reason why flight attendants tell passengers to use the oxygen masks first before offering it to their children. You cannot continue to run this kind of demanding parenting race without taking care of you. You are at increased risk for burnout. I'm deadly serious.
Anderson gives further credibility to this crisis facing many exhausted women today, women who feel guilty for voicing their exhaustion and need for rest. We represent a large generation of women who have tried to do it all, be it all, be the best at it all, at a huge cost to our physical, emotional, mental and spiritual health (without any thought that equation might include special needs!). And if you think the family unit and your children don’t notice or suffer as a result, you are mistaken. Kids are remarkably sensitive and insightful to what’s going on around them. They know if you are happy and content, or stressed and rabid beyond belief (maybe even wishing to escape into a romance novel of your own perhaps??).
Is this really the message we want to give about ourselves and our life roles to our daughters and our sons? Do we want to leave them a legacy that defines the woman’s role as one of martydom, with the required skills of juggling all the life balls without ever dropping a single one, while adding more balls to the equation every single day? No wonder so many women are pooped, discouraged, and out of touch with their inner goddess!
We need to stop the madness. We need to take time out. Anderson’s books and words may just give you the added incentive and permission that you think you need to do just that. If nothing else, you will find out that you aren’t alone in this life madness and that yes, you can get off the crazy tilt a whirl, at the very least for a short time. Short escapes can work wonders.
You can find out more about Anderson’s work at: http://www.joananderson.org/.
and more about mine, of course (it is my blog after all!) at http://www.judywinter.com/.
Your family will be better off because mom took needed time away to refuel. Most importantly, so will you. Most moms have a tough time admitting that maybe, just maybe, our children and family can exist without our micromanagement for just a little while (especially tough for some moms to leave DAD in charge!). They can make it without us- for a little while at least! What a relief to find this out before you fall head first from exhaustion into the homemade lasagna, and snort noodles!
So this week, try hard to uncover and highlight at least three blessings your child with special needs brings into your life and celebrate them, together! And then share them with me! …Right after you lock the bathroom door and take a long, hot bubble bath (or even a short one).
Me? I’m gonna go curl up cat like and take a nap in the warm late-April sun, right after I fold the last load of laundry...
Throughout my life, the timeless messages of Julie Cameron, Anne Morrow Lindberg, Maya Angelou and others have added fire to my creative soul. So I’m always on the lookout for new writers whose talent for written expression inspires me and motivates me to be the best darn human being I can be. Like most people, I am a continual work in progress. No big surprise there. As long as we are still breathing, there is room for us to discover more about ourselves and to grow and change in amazing ways. Always.
So I’ve got a new name to add to my list of those who challenge me to pursue new personal heights, and I 'm going to share it with all you incredibly hard-working moms of children with special needs (and those without). I’ve just discovered the terrific works of author Joan Anderson. Like the sacred words of Julia Cameron, a gifted champion and nurturer of the writer’s sometimes fragile psyche and soul, Anderson’s book holds the power to inspire women to take powerful action to improve their lives.
This talented author gives women the permission they desperately seek, (yet rarely find outside themselves—hint: stop looking there!), to take time out for personal reflection and renewal. Think of this read as an invigorating blood transfusion for a tired mother’s soul (chicken soup alone won't cut it!).
Anderson challenges our gender, one extremely effective at caretaking everyone but themselves, to take time out to reconnect with who they once were, and still may be behind all the societal masks and demanding female roles they have taken on to the nth degree. (I’m exhausted just writing about the subject!). Anderson invites us to ditch the wobbly, painful stilettos (the masks we wear each day) and get real by giving women permission to reclaim their own lives-- and wear more sensible shoes as they navigate life’s rocky emotional terrain.
I came across this author’s important works during a much-needed day away from demands as a new author. As I prepare to face some especially important whirlwind weeks involving book promotion and media appearances, I came across Anderson’s most recent work: A Weekend to Change Your Life: Find Your Authentic Self After A Lifetime of Being All Things to All People. I found it while leisurely browsing in a bookstore. (Haven’t done that far too long).
Intrigued by the title (book titles do matter!), I began reading her words before leaving the bookstore. I couldn’t stop! With my discerning writer’s eye, that's something that rarely happens. With my increasing professsional demands, I must connect with a book immediately to even consider purchasing it. Anderson's book had me reading before I left the parking lot.
This particular title is a semi workbook/companion guide to Anderson’s bestselling book A Year by the Sea (I'm drawn to titles involving the word SEA!). I promptly got myself a copy of that book, too. I keep going back and forth between the two titles, savoring every single word on each page, finding each valuable reflection and insight a gift. I’m stopping only long enough to blog these words, while forgiving myself for going two weeks without a new entry! The books are working already.
Anderson’s insightful words offer a particularly timely statement for my own life. I have just finished a huge personal goal of becoming an author of a book about a topic about which I am passionate- improving the lives of children with special needs, and the lives of their families. Becoming published by traditional publishing channels is no easy feat these days and it gets harder each year. Plus, I’m still dealing with the grief over the death of my son in 2003.
Reality check. I am at one giant life crossroad. And that ever present nagging question What now? that often faces us gals once we climb one big mountain (or finish a big ‘ol stinkin pile of dirty laundry), is already chanting in my brain. Every so often, I tell it to chill out! Anderson challenges us to say that more often, using stronger language.
It’s just like mothers to barely take time to catch their breath, validate their achievements (if we do that at all) and say good job! before they take on another big task-- all the while wondering what we must do next in our never ending quest to prove our value and our self worth and mommy stock. I’m not going to rant about how we got ourselves into this role-playing mess, not today anyway. But here’s Anderson suggests a novel way to help you try to find your way out of it.
How about doing nothing?
How about taking time needed to retreat into silence in order to rediscover who you really are, to rediscover what moves you, makes you cry, laugh or love passionately and celebrate you? How about taking time to reflect on your own greatness as a human being outside of all these other roles you wear, in order to rediscover the terrific person that lies beyond the laundry, homemade lasagna and PTA carnival chair title?
"No time!" you shout!
Anderson challenges that protective chant, too, by citing all the hours, minutes, microseconds in a day (some of which we clearly waste), before challenging you to find some of that time just for you (she did this to an audience member live on Oprah!). Anderson has a critical point to make. We have become a nation of burned out moms, speeding by life moments in gas gulping SUVs. Our children are watching us closely, and they are stressing out, too. We are making some crazed choice to stay on this treadmill of parenting madness.
Anderson works helps us understand that we can and must change this insanity.
This author is right on, sisters! And we should be paying close attention, because ultimately our children are paying the price of our refusal to take care of ourselves and one day, (if we have parented well and can find additional resources where needed), most of our kids will leave us to take flight and create their own worlds in their own space. Then what?
We could all benefit from a slight slow down and reflection, don’t ‘cha think?
While the meat of Anderson’s words are designed to help women in mid-life transition rediscover who they are beyond the exhausting roles of wife, mother, employee, etc. I find her valuable message of self care for women especially powerful for mothers of children with special needs. When it comes to running the parenting race, these women are triathletes.
Like other moms, they often give until they have nothing left to give, but the heightened intensity of special needs parenting demands make these moms the true heros in the non-stop motherhood race. Finding time away to these moms isn’t as simple as it is to most. It requires extra careful, thoughtful planning, and usually great child care, a very supportive husband, or priceless (and hard to come by) respite care. The good news is that where there is a will (and a great need for life-impacting change), there is nearly always a way.
Permission to take care of YOU (and time away from parenting) granted!
Take time out for you! That’s Anderson’s battle cry, mine, too. I included self care (for dads, too!) in my book Breakthrough Parenting for Children with Special Needs: Raising the Bar of Expectations (the book you need besides Andersons!), because I believe it is a critical component in the special needs family equation. There’s a reason why flight attendants tell passengers to use the oxygen masks first before offering it to their children. You cannot continue to run this kind of demanding parenting race without taking care of you. You are at increased risk for burnout. I'm deadly serious.
Anderson gives further credibility to this crisis facing many exhausted women today, women who feel guilty for voicing their exhaustion and need for rest. We represent a large generation of women who have tried to do it all, be it all, be the best at it all, at a huge cost to our physical, emotional, mental and spiritual health (without any thought that equation might include special needs!). And if you think the family unit and your children don’t notice or suffer as a result, you are mistaken. Kids are remarkably sensitive and insightful to what’s going on around them. They know if you are happy and content, or stressed and rabid beyond belief (maybe even wishing to escape into a romance novel of your own perhaps??).
Is this really the message we want to give about ourselves and our life roles to our daughters and our sons? Do we want to leave them a legacy that defines the woman’s role as one of martydom, with the required skills of juggling all the life balls without ever dropping a single one, while adding more balls to the equation every single day? No wonder so many women are pooped, discouraged, and out of touch with their inner goddess!
We need to stop the madness. We need to take time out. Anderson’s books and words may just give you the added incentive and permission that you think you need to do just that. If nothing else, you will find out that you aren’t alone in this life madness and that yes, you can get off the crazy tilt a whirl, at the very least for a short time. Short escapes can work wonders.
You can find out more about Anderson’s work at: http://www.joananderson.org/.
and more about mine, of course (it is my blog after all!) at http://www.judywinter.com/.
Your family will be better off because mom took needed time away to refuel. Most importantly, so will you. Most moms have a tough time admitting that maybe, just maybe, our children and family can exist without our micromanagement for just a little while (especially tough for some moms to leave DAD in charge!). They can make it without us- for a little while at least! What a relief to find this out before you fall head first from exhaustion into the homemade lasagna, and snort noodles!
So this week, try hard to uncover and highlight at least three blessings your child with special needs brings into your life and celebrate them, together! And then share them with me! …Right after you lock the bathroom door and take a long, hot bubble bath (or even a short one).
Me? I’m gonna go curl up cat like and take a nap in the warm late-April sun, right after I fold the last load of laundry...
Sunday, April 16, 2006
Siblings Rock!
When I talk about special needs families, I can't ramble on for very long without mentioning the important subject of siblings. They are my heroes. They don't ask to be put into this sometimes crazy family situation, yet they must live with the results of it, for good or not so good, for the rest of their lives.
That's a lot to ask of them, and it makes it critical that the adults in their lives tune into sibling's needs and work hard to meet those needs-- for the sake of everyone's future.
I love siblings so much that I have devoted an entire chapter to them in my book Breakthrough Parenting for Children with Special Needs: Raising the Bar of Expectations. That chapter includes more than one wise and wonderful sibling voice, along with information about a terrific sibling resource called Sibshops, an organization designed to help siblings better handle their valuable roles! Check it out!
I've asked my daughter to join me in rambling about siblings this week in an informal Q & A. Jenna recently graduated from college with a degree in visual journalism. I think she turned out great for a sibling in a special needs family!
Unfortunately, her brother, Eric, passed away in 2003 at age 12. As Jenna reflects on his life, we both hope that her words will help you have a little better understanding about what it means to be a sibling in these challenging and often amazing families.
If you want to know more about Jenna's sibling role, and that of some other wonderful sibs, you've gotta read Breakthrough Parenting!!!(had to get the sales pitch in there for my publisher!!) I promise you that the sibling chapter alone makes BP worth your time. I have found that these siblings are often exceptional human beings, thanks in part, to their demanding roles. For more about Breakthrough Parenting, visit my website: JudyWinter.com.
Q: Jenna, tell me the first word that comes to your mind when I say siblings and special needs:
A: Eric.
Q: What do you remember most about your brother?
A: His joy for life. When I think of my brother, I think about happy he was.
Q: What was the most difficult thing about being Eric's sibling?
A: How much attention he needed when he was younger, and all the things we had to consider before we went anywhere.
Q: Do any specific challenges come to mind?
A: I remember when we traveled to Florida and we had to bring a lot of stuff for Eric's needs, including his special seat to sit in so he could fly.
Q: Did your brother every embarrass you?
A: Only when he got upset and acted out, especially when he was younger.
Q: What can parents do in this kind of situation to help siblings feel better?
A: Stay calm about it. Don't get upset with the sibling with special needs. If a parent overreacts to the situation, it can make it even worse and more embarrassing for the sibling. Also, let the sibling know that they haven't been forgotten in the moment, and allow them to express their feelings about it. Check in with siblings informally later on to see how they're doing. But don't press them into talking about it if they don't want to discuss it right then.
Q: What do you think is the hardest thing for a sibling to face about life with brother or sister with a disability?
A: It's hard having to explain your sibling to others and have them understand the disability. Making sacrifices is hard, too. Like when you have special family plans and your sibling's needs cut those plans short or they get cancelled because of things like illness or trouble finding childcare.
Q: What do see as the positives of having had a brother with special needs?
A: I definitely have an awareness of a population that doesn't get talked about enough, one that people are often uncomfortable talking about. I think I am more open to accepting people with differences despite what those differences might be.
Q: What did we do as parents that made your role easiser?
A: You always thought about me and made time to give me attention, too. You met my needs, not just Eric's. There was always time for me to pursue my favorite activities and live out my life dreams, too.
Q: In what way did we as parents help make your sibling role easier?
A: By your positive example. You set a good example for everyone around you. You were proud of your son, and because you weren't embarrassed by him, neither was I.
Q: Is there anything we could have done differently?
A: I don't think so. You did the best you could.
Q: What do you miss most about Eric?
A: How happy he was to hang out with me. That made me happy.
Q: Your advice to other siblings who might be struggling with their role?
A: Love the good pieces of your sibling. Focus on the happy moments. Try to enjoy what your sibling enjoys and get involved with them, regardless of anything they might do that embarrasses you or makes you mad, or leaves you feeling left out.
Q: If you had a choice would you have changed Eric's special needs?
A: No. But I wish I could have still had Eric in my life and also have had another sibling without special needs to share this whole sibling experience with.
Q: Anything else you want to add?
A: I think that covers it, for now.
Thanks, Jenna!!
No problem, mom!
..Now it's your turn to talk to your child. Make a real effort to connect with all the kids in your family this week. Cause each one is incredibly special....and they all need your parenting.
That's a lot to ask of them, and it makes it critical that the adults in their lives tune into sibling's needs and work hard to meet those needs-- for the sake of everyone's future.
I love siblings so much that I have devoted an entire chapter to them in my book Breakthrough Parenting for Children with Special Needs: Raising the Bar of Expectations. That chapter includes more than one wise and wonderful sibling voice, along with information about a terrific sibling resource called Sibshops, an organization designed to help siblings better handle their valuable roles! Check it out!
I've asked my daughter to join me in rambling about siblings this week in an informal Q & A. Jenna recently graduated from college with a degree in visual journalism. I think she turned out great for a sibling in a special needs family!
Unfortunately, her brother, Eric, passed away in 2003 at age 12. As Jenna reflects on his life, we both hope that her words will help you have a little better understanding about what it means to be a sibling in these challenging and often amazing families.
If you want to know more about Jenna's sibling role, and that of some other wonderful sibs, you've gotta read Breakthrough Parenting!!!(had to get the sales pitch in there for my publisher!!) I promise you that the sibling chapter alone makes BP worth your time. I have found that these siblings are often exceptional human beings, thanks in part, to their demanding roles. For more about Breakthrough Parenting, visit my website: JudyWinter.com.
Q: Jenna, tell me the first word that comes to your mind when I say siblings and special needs:
A: Eric.
Q: What do you remember most about your brother?
A: His joy for life. When I think of my brother, I think about happy he was.
Q: What was the most difficult thing about being Eric's sibling?
A: How much attention he needed when he was younger, and all the things we had to consider before we went anywhere.
Q: Do any specific challenges come to mind?
A: I remember when we traveled to Florida and we had to bring a lot of stuff for Eric's needs, including his special seat to sit in so he could fly.
Q: Did your brother every embarrass you?
A: Only when he got upset and acted out, especially when he was younger.
Q: What can parents do in this kind of situation to help siblings feel better?
A: Stay calm about it. Don't get upset with the sibling with special needs. If a parent overreacts to the situation, it can make it even worse and more embarrassing for the sibling. Also, let the sibling know that they haven't been forgotten in the moment, and allow them to express their feelings about it. Check in with siblings informally later on to see how they're doing. But don't press them into talking about it if they don't want to discuss it right then.
Q: What do you think is the hardest thing for a sibling to face about life with brother or sister with a disability?
A: It's hard having to explain your sibling to others and have them understand the disability. Making sacrifices is hard, too. Like when you have special family plans and your sibling's needs cut those plans short or they get cancelled because of things like illness or trouble finding childcare.
Q: What do see as the positives of having had a brother with special needs?
A: I definitely have an awareness of a population that doesn't get talked about enough, one that people are often uncomfortable talking about. I think I am more open to accepting people with differences despite what those differences might be.
Q: What did we do as parents that made your role easiser?
A: You always thought about me and made time to give me attention, too. You met my needs, not just Eric's. There was always time for me to pursue my favorite activities and live out my life dreams, too.
Q: In what way did we as parents help make your sibling role easier?
A: By your positive example. You set a good example for everyone around you. You were proud of your son, and because you weren't embarrassed by him, neither was I.
Q: Is there anything we could have done differently?
A: I don't think so. You did the best you could.
Q: What do you miss most about Eric?
A: How happy he was to hang out with me. That made me happy.
Q: Your advice to other siblings who might be struggling with their role?
A: Love the good pieces of your sibling. Focus on the happy moments. Try to enjoy what your sibling enjoys and get involved with them, regardless of anything they might do that embarrasses you or makes you mad, or leaves you feeling left out.
Q: If you had a choice would you have changed Eric's special needs?
A: No. But I wish I could have still had Eric in my life and also have had another sibling without special needs to share this whole sibling experience with.
Q: Anything else you want to add?
A: I think that covers it, for now.
Thanks, Jenna!!
No problem, mom!
..Now it's your turn to talk to your child. Make a real effort to connect with all the kids in your family this week. Cause each one is incredibly special....and they all need your parenting.
Saturday, April 08, 2006
Sending Breakthrough Parenting Out into the World
I have officially begun the whole book signing/public appearance phase that comes with being a published author! And I must say that after all the hard work and tough life experiences required of me to get to this point, this public adoration stuff is kind of fun, and cool.
Plus, I love all the hugs and kudos! But I promise to stay humble. All I have to do to accomplish this little feat is to link on to amazon.com and eyeball all those reviews with less than 3 stars given for books that I KNOW are really good reads!
Ouch!
Fact is, I have sent my baby (my blood, sweat and tears) out into the cold, cruel, opinionated and often critical world. It's also a world that can be remarkably beautiful, wise, compassionate, even gutsy when it comes to fighting for basic human rights and dignity, and societal justice. I'm counting on those folks to review me!
There is much goodness and beauty in this crazy world (some people even give authors five stars!!) yet we rarely expose it. Why is that? As a writer, I have learned that our objective craft often requires that we take in some rather sour words (otherwise known as 'constructive criticism') about our work, along with all those sweet, good-time reviews we hope to receive. It's rarely cause for celebration.
But nobody's gonna love you all the time (not even if you are Oprah). Nor will everyone agree with your cause or your passionate take on it. In fact, some people may well argue really loudly against it (and some people just like to be mean!). Don't you just love those kind of reality (ego) checks? I work hard to take anything of value from these reviews, then quickly move on.
I've been fortunate (so far) to experience a terrific amount of enthusiastic support for Breakthrough Parenting, which I believe is a great resource (big surprise!). But real solutions to personal challenges come when you combine great resources with your own personal sweat and heartfelt, fearless actions. That creates magic. A good resource can help give you an empowering and energizing view about your life that can help lead you to make important change. IF you are open to that possibility.
So if someone promises you a magic wand, save your time and money and run like a crazed cat in the other direction.
I wish that I could stand there with some of my readers, and wipe away their bitter, painful and powerful tears of frustation, and soften the grief that may arise as they read my words, and as they recognize their own difficult life stories. I've seen these kind of tears at my book signings. I trust that through my words, I may in some small way touch one person's life enough to help them make good changes in their own world, and in so doing, create better lives for their children.
I hope that my words and those of others in my book, help people hang on tightly during some particularly stinky life moments. (Think strong lifeline in powerful quicksand). If one person can hold on when they want to give up, I think my book will have served its purpose.
But I sure hope my honest, emotional words also generate lots of discussion among the warring factions, along with an important call to personal actions for change. I hope BP gives birth to new advocates committed to helping all kids lead better lives, advocates who think change is long overdue and who will join me and others fighting for needed improvements and awareness that helps all kids thrive. Raising the bar of expectations for children with special needs- one child at a time, is my battle cry. It was my original intention in all this special needs work to which I have committed my heart and soul, and it drives me still.. always will.
When I speak before crowds, I love it when student teachers (those soon to be in their own classrooms) come up and ask me what they can do to create greater change within their own profession. Their honest words and willingness to learn new stuff, fueled by youthful idealism, unbridled energy and pure intention, give me tremendous hope for the future. Plus, they always energize and inspire me (and make me wish I was twenty something again for a few days, but with the wisdom, life experiences, financial security, and cool convertible that I have today!). The grass often looks greener... I think I prefer the wisdom...(and the car!).
Now go squeeze your children tightly; and then hug them a second time for me. 'Cause us writers can always use the love--and so can our kids!
And if the spirit, and my words move you, please give me a good review online- with lots of gold stars! Thanks!
Plus, I love all the hugs and kudos! But I promise to stay humble. All I have to do to accomplish this little feat is to link on to amazon.com and eyeball all those reviews with less than 3 stars given for books that I KNOW are really good reads!
Ouch!
Fact is, I have sent my baby (my blood, sweat and tears) out into the cold, cruel, opinionated and often critical world. It's also a world that can be remarkably beautiful, wise, compassionate, even gutsy when it comes to fighting for basic human rights and dignity, and societal justice. I'm counting on those folks to review me!
There is much goodness and beauty in this crazy world (some people even give authors five stars!!) yet we rarely expose it. Why is that? As a writer, I have learned that our objective craft often requires that we take in some rather sour words (otherwise known as 'constructive criticism') about our work, along with all those sweet, good-time reviews we hope to receive. It's rarely cause for celebration.
But nobody's gonna love you all the time (not even if you are Oprah). Nor will everyone agree with your cause or your passionate take on it. In fact, some people may well argue really loudly against it (and some people just like to be mean!). Don't you just love those kind of reality (ego) checks? I work hard to take anything of value from these reviews, then quickly move on.
I've been fortunate (so far) to experience a terrific amount of enthusiastic support for Breakthrough Parenting, which I believe is a great resource (big surprise!). But real solutions to personal challenges come when you combine great resources with your own personal sweat and heartfelt, fearless actions. That creates magic. A good resource can help give you an empowering and energizing view about your life that can help lead you to make important change. IF you are open to that possibility.
So if someone promises you a magic wand, save your time and money and run like a crazed cat in the other direction.
I wish that I could stand there with some of my readers, and wipe away their bitter, painful and powerful tears of frustation, and soften the grief that may arise as they read my words, and as they recognize their own difficult life stories. I've seen these kind of tears at my book signings. I trust that through my words, I may in some small way touch one person's life enough to help them make good changes in their own world, and in so doing, create better lives for their children.
I hope that my words and those of others in my book, help people hang on tightly during some particularly stinky life moments. (Think strong lifeline in powerful quicksand). If one person can hold on when they want to give up, I think my book will have served its purpose.
But I sure hope my honest, emotional words also generate lots of discussion among the warring factions, along with an important call to personal actions for change. I hope BP gives birth to new advocates committed to helping all kids lead better lives, advocates who think change is long overdue and who will join me and others fighting for needed improvements and awareness that helps all kids thrive. Raising the bar of expectations for children with special needs- one child at a time, is my battle cry. It was my original intention in all this special needs work to which I have committed my heart and soul, and it drives me still.. always will.
When I speak before crowds, I love it when student teachers (those soon to be in their own classrooms) come up and ask me what they can do to create greater change within their own profession. Their honest words and willingness to learn new stuff, fueled by youthful idealism, unbridled energy and pure intention, give me tremendous hope for the future. Plus, they always energize and inspire me (and make me wish I was twenty something again for a few days, but with the wisdom, life experiences, financial security, and cool convertible that I have today!). The grass often looks greener... I think I prefer the wisdom...(and the car!).
Now go squeeze your children tightly; and then hug them a second time for me. 'Cause us writers can always use the love--and so can our kids!
And if the spirit, and my words move you, please give me a good review online- with lots of gold stars! Thanks!
Sunday, April 02, 2006
Brooke Ellison Inspires!
Today's blog is going to be short, fairly sweet and definately to the point- mainly cause I've been slightly overscheduled this week. So it's either keep this short or hold off on adding a new blog for a few more days. (I can't disappoint you like that)! And why ramble on this week when I can make great use of your reading time by suggesting that you check out a great story on your own with the click of a mouse! (Ain't technology grand?).
Want to get inspired in your own life? Check this out...
My friend, Brooke Ellison, is running for New York State Senate. To learn about Brooke's story, her life and her political campaign, just go to her website www.brookeellison.com. After reading about this amazing young woman, you might just be motivated to move a few mountains of your own this week! Brooke has faced some big life challenges, including disability, with remarkable courage, grace and guts.
Be forewarned- once you have 'met' Brooke Ellison, it's going to be a lot tougher for you to make the same lame excuses about what's preventing you from taking action to create much needed-change in your own daily life. Remember all those big dreams you once had? It's rarely too late to pursue them...
Brooke Ellison is one smart, determined woman, and great role model for anyone looking to change the world- or at least a tiny corner of it. I think she'd make a terrific, hard-working Senator, sensitive to meeting the needs of an increasingly diverse society teetering on the edge of madness, not a bad person to have in office these days, huh?
Brooke has succeeded (excelled) in everything she has taken on in her life, regardless of the significant challenges thrown her way. Instead of complaining loudly about the need for change in the world, Brooke Ellison is taking important action. There's a big difference between the two.
Once you've learned more about Brooke, it's your turn to act! Whatever it is that moves you, pushes your buttons, makes you stand up and cheer, take it on, however seemingly small the action. Get started. Get educated. Get inspired. Then get involved. And use your voice wisely.
That's how real change happens. And Lord knows, we could use the leadership.
Wishing you a week of productive change.... Tell Brooke I sent you...
Want to get inspired in your own life? Check this out...
My friend, Brooke Ellison, is running for New York State Senate. To learn about Brooke's story, her life and her political campaign, just go to her website www.brookeellison.com. After reading about this amazing young woman, you might just be motivated to move a few mountains of your own this week! Brooke has faced some big life challenges, including disability, with remarkable courage, grace and guts.
Be forewarned- once you have 'met' Brooke Ellison, it's going to be a lot tougher for you to make the same lame excuses about what's preventing you from taking action to create much needed-change in your own daily life. Remember all those big dreams you once had? It's rarely too late to pursue them...
Brooke Ellison is one smart, determined woman, and great role model for anyone looking to change the world- or at least a tiny corner of it. I think she'd make a terrific, hard-working Senator, sensitive to meeting the needs of an increasingly diverse society teetering on the edge of madness, not a bad person to have in office these days, huh?
Brooke has succeeded (excelled) in everything she has taken on in her life, regardless of the significant challenges thrown her way. Instead of complaining loudly about the need for change in the world, Brooke Ellison is taking important action. There's a big difference between the two.
Once you've learned more about Brooke, it's your turn to act! Whatever it is that moves you, pushes your buttons, makes you stand up and cheer, take it on, however seemingly small the action. Get started. Get educated. Get inspired. Then get involved. And use your voice wisely.
That's how real change happens. And Lord knows, we could use the leadership.
Wishing you a week of productive change.... Tell Brooke I sent you...
Sunday, March 26, 2006
Singin the Praises of Music Therapy!
Here's a question for you to get your brains in gear!
What does my first official book signing and a terrific rock band propelled by teenagers with special needs and great chops have to do with today's rambling?
Lots! -and then some! I spent much of my Saturday at a multi-state conference for music therapists and college students hoping to join their ranks. During lunch, some remarkable musicians with special needs performed for an enthusiastic crowd. The band included a Joan-Jett-like singer who put Bucky from the current season of American Idol to shame. Talk about being inspired, and focusing on abilty -wow!
Until the conference, I had alsolutely no idea what I was going to rant about this week. I was already past due per my deadline-driven mind, so I had to remind myself loudly that I am the only one calling the terms on this blogging gig! The months (years) of non-stop writing to realize the publication of Breakthrough Parenting for Children with Special Needs, and far too much solitude, had left me craving a little break in the writing department (and with a JLO-imposter behind!). Lately, I've been experiencing a little bit of the dreaded writer's block, but I know it will pass eventually-- as will the behind with a bit of work.
The fact that I am now an author who has climbed the big publishing mountain and jumped all the hoops required to see my book on bookstore shelves (then turned out impressive promotion materials in short order), meant nothing as I faced the empty page. Procrastination hadn't magically disappeared from my writer's vocabulary simply because my name and face were now on a book (although being called an author sure does soothe the blank mind and tender ego and make you feel a bit like a rockstar)!
In reality, I was tired of writing and I wanted to go do something else for a change, like shop for new shoes, go have a beer with friends (and I don't even drink beer!), or watch Under the Tuscan Sun and sigh. I was acting like a spoiled child who wanted her own way again. My approach clearly wasn't working (ya hear me, Dr. Phil??).
Oh, there was no shortage of topics to rant about this week -like the dad who in his rush to board his commuter train to Washington D.C. left his seven-month-old child in the car at the train station (there aren't enough words)! Then there was the media flap over an alleged Nicole Richie social faux paux (wasn't she raised in priviledge -or is this real problem?). This event involved uttering a suggestive profanity inappropriately toward an unsuspecting young boy (is it really that tough to figure out basic right and wrong in today's world, especially where young children are involved?). Or are all societal boundaries now up for grabs? I sure hope not.
When I read that the boy's father had refused to sign a release to air the tasteless interchange, it gave me renewed faith in parenting and I found myself shouting out kudos at the computer screen- You Go Dad!! I gave him five stars for taking his role as parent seriously, a too rare occurrance in today's media-obsessed, pop-culture, I wanna be your friend, not your parent and our you-can-just-change-the-channel world! The continued dumbing down of society as modeled expertly by what is supposed to be our future leaders (and what should be our best and brightest young people), who also happen to be pretty big role models for our youngest, is a reality that infuriates me and leaves me with far too many questions for which I have no answers (although I usually try to fake 'em).
But here's one answer: Parents: teach your kids the basics of being decent human beings, okay?? Things like the simple concept of basic right and wrong, and good manners and issues involving self respect and human dignity (and tell them stories about all their ancestors who fought so relentlessly for our basic civil rights, causes many people must still fight for today). But I digress, and this topic is definately for another blog, another day. So let's return to today's topic, shall we?
As usual, this week there was no shortage of shake-your-head life moments to choose from. Yet, somehow I wanted to use my forum for something more news worthy, more human, more life altering. I wanted to share information that could help change kids lives.
So here you go, two simple words -and they aren't profane. Music Therapy.
Research strongly suggests that music therapy holds the power to impact the brain and development in positive ways, especially for those with a wide range of special needs.
All of us have a story about how music has impacted our lives in powerful ways, right?
But it is what I saw music and music therapy do for my son who had cerebral palsy that first sold me on this profession, and made me a true believer in the power of music. Eric took part in the remarkable program for seven years, before passing away suddenly in 2003 at age 12. Because of this profession, my son's talent for music was both uncovered and nutured, and Eric was composing music before he died. Music added such richness and purpose to my son's life, and to his development. Eric had a significant disability, but he was a musician and a kid first.
In my short list of programs that I believe are a must for many children with special needs, music therapy is right up there. So when asked to present for this conference, and hold a book signing, I readily and enthusiastically agreed. I wanted to say thanks by presenting a session that highlighted the human results of the work these professionals do each day, as I told my son's amazing story. I also wanted and needed to take in the smells and sounds of an event that I knew would remind me of my son's life and face and laughter. And that's exactly what I savored -and more.
The Great Lakes Region of the American Music Therapy Association annual conference was hosting nearly 300 professionals and music therapy students who were networking and sharing individual expertise in order to help clients with special needs make important life gains, no matter how small, no matter the tough challenges presented. Many were committed to improving the lives of those with autism. The heart and passion of so many in attendance was contagious and inspiring and gave me hope for the future of our kids.
It was one of those events where the actions of people who are trying hard to make a difference in the world left me asking this question: what would happen if all the people who misuse their privilege and education and money were to instead turn their focus from frivolity and self-centered pursuits of fleeting happiness and easy fame to those efforts that best used their energy and smarts for the good of others? Imagine the power we could harness to change the world, or at least a small piece of it. Imagine what we could do for those needing our support?Altruistic, maybe. So what? I've seen the results of such focus. They are often magical.
Traffic at my table was brisk as each book purchaser readily shared a story about the work they do each and every day. So many thanked me for writing the book to help families. More than one said they were buying it to pass on to a parent in dire need. I thanked them all for their commitment to their clients, while also reminding them of the importance of reading it themselves first. We each have much to learn from one another.
One of my biggest missions with this book is to help parents and professionals work together more productively, and with less grief. We must model increasingly positive, respectful teamwork if our children are to thrive. In this place, on this day, I experienced the role of these outstanding professionals as my comrades, teammates to be embraced and celebrated, not as an enemy to be avoided whenever possible. That misguided perception of the title 'professional' is held by too many parents. As is the often inappropriate definition of 'parent' by the professional ranks. We both play a role in this unfortunate interchange, and it must change.
Saturday's experience left me with a renewed commitment to bring what are often opposing sides together in positive, respectful, caring ways that can help change children's lives for good. I am passionate about this work. It must be done if all children are to live better lives, period. No more excuses from the adults in their world for giving them anything less.
Music holds the power to transform all of our lives. It was true for my son; it is true for me; and at Saturday's conference, it was true for all those in attendance. As a writer, I sing with words. These professionals sing with great heart for a population that is too often undervalued and misunderstood. I applaud their work, their passion and their commitment. I applaud them. Like a parent trying to work through the roughest parenting patch to create a better world for their children with disabilities, the work of these music professionals is not always easy.
Truth be told, few programs can cause me to shout to the heavens about the incredible promise they hold for kids with special needs. Last Saturday, I was again reminded of why I love music therapy, and while no one profession can offer a panacea treatment for children with special needs or their families, this one sure comes close.
Tell someone you know and love about music therapy this week. It may just change a child's life -and your own.
Wouldn't that be grand??
What does my first official book signing and a terrific rock band propelled by teenagers with special needs and great chops have to do with today's rambling?
Lots! -and then some! I spent much of my Saturday at a multi-state conference for music therapists and college students hoping to join their ranks. During lunch, some remarkable musicians with special needs performed for an enthusiastic crowd. The band included a Joan-Jett-like singer who put Bucky from the current season of American Idol to shame. Talk about being inspired, and focusing on abilty -wow!
Until the conference, I had alsolutely no idea what I was going to rant about this week. I was already past due per my deadline-driven mind, so I had to remind myself loudly that I am the only one calling the terms on this blogging gig! The months (years) of non-stop writing to realize the publication of Breakthrough Parenting for Children with Special Needs, and far too much solitude, had left me craving a little break in the writing department (and with a JLO-imposter behind!). Lately, I've been experiencing a little bit of the dreaded writer's block, but I know it will pass eventually-- as will the behind with a bit of work.
The fact that I am now an author who has climbed the big publishing mountain and jumped all the hoops required to see my book on bookstore shelves (then turned out impressive promotion materials in short order), meant nothing as I faced the empty page. Procrastination hadn't magically disappeared from my writer's vocabulary simply because my name and face were now on a book (although being called an author sure does soothe the blank mind and tender ego and make you feel a bit like a rockstar)!
In reality, I was tired of writing and I wanted to go do something else for a change, like shop for new shoes, go have a beer with friends (and I don't even drink beer!), or watch Under the Tuscan Sun and sigh. I was acting like a spoiled child who wanted her own way again. My approach clearly wasn't working (ya hear me, Dr. Phil??).
Oh, there was no shortage of topics to rant about this week -like the dad who in his rush to board his commuter train to Washington D.C. left his seven-month-old child in the car at the train station (there aren't enough words)! Then there was the media flap over an alleged Nicole Richie social faux paux (wasn't she raised in priviledge -or is this real problem?). This event involved uttering a suggestive profanity inappropriately toward an unsuspecting young boy (is it really that tough to figure out basic right and wrong in today's world, especially where young children are involved?). Or are all societal boundaries now up for grabs? I sure hope not.
When I read that the boy's father had refused to sign a release to air the tasteless interchange, it gave me renewed faith in parenting and I found myself shouting out kudos at the computer screen- You Go Dad!! I gave him five stars for taking his role as parent seriously, a too rare occurrance in today's media-obsessed, pop-culture, I wanna be your friend, not your parent and our you-can-just-change-the-channel world! The continued dumbing down of society as modeled expertly by what is supposed to be our future leaders (and what should be our best and brightest young people), who also happen to be pretty big role models for our youngest, is a reality that infuriates me and leaves me with far too many questions for which I have no answers (although I usually try to fake 'em).
But here's one answer: Parents: teach your kids the basics of being decent human beings, okay?? Things like the simple concept of basic right and wrong, and good manners and issues involving self respect and human dignity (and tell them stories about all their ancestors who fought so relentlessly for our basic civil rights, causes many people must still fight for today). But I digress, and this topic is definately for another blog, another day. So let's return to today's topic, shall we?
As usual, this week there was no shortage of shake-your-head life moments to choose from. Yet, somehow I wanted to use my forum for something more news worthy, more human, more life altering. I wanted to share information that could help change kids lives.
So here you go, two simple words -and they aren't profane. Music Therapy.
Research strongly suggests that music therapy holds the power to impact the brain and development in positive ways, especially for those with a wide range of special needs.
All of us have a story about how music has impacted our lives in powerful ways, right?
But it is what I saw music and music therapy do for my son who had cerebral palsy that first sold me on this profession, and made me a true believer in the power of music. Eric took part in the remarkable program for seven years, before passing away suddenly in 2003 at age 12. Because of this profession, my son's talent for music was both uncovered and nutured, and Eric was composing music before he died. Music added such richness and purpose to my son's life, and to his development. Eric had a significant disability, but he was a musician and a kid first.
In my short list of programs that I believe are a must for many children with special needs, music therapy is right up there. So when asked to present for this conference, and hold a book signing, I readily and enthusiastically agreed. I wanted to say thanks by presenting a session that highlighted the human results of the work these professionals do each day, as I told my son's amazing story. I also wanted and needed to take in the smells and sounds of an event that I knew would remind me of my son's life and face and laughter. And that's exactly what I savored -and more.
The Great Lakes Region of the American Music Therapy Association annual conference was hosting nearly 300 professionals and music therapy students who were networking and sharing individual expertise in order to help clients with special needs make important life gains, no matter how small, no matter the tough challenges presented. Many were committed to improving the lives of those with autism. The heart and passion of so many in attendance was contagious and inspiring and gave me hope for the future of our kids.
It was one of those events where the actions of people who are trying hard to make a difference in the world left me asking this question: what would happen if all the people who misuse their privilege and education and money were to instead turn their focus from frivolity and self-centered pursuits of fleeting happiness and easy fame to those efforts that best used their energy and smarts for the good of others? Imagine the power we could harness to change the world, or at least a small piece of it. Imagine what we could do for those needing our support?Altruistic, maybe. So what? I've seen the results of such focus. They are often magical.
Traffic at my table was brisk as each book purchaser readily shared a story about the work they do each and every day. So many thanked me for writing the book to help families. More than one said they were buying it to pass on to a parent in dire need. I thanked them all for their commitment to their clients, while also reminding them of the importance of reading it themselves first. We each have much to learn from one another.
One of my biggest missions with this book is to help parents and professionals work together more productively, and with less grief. We must model increasingly positive, respectful teamwork if our children are to thrive. In this place, on this day, I experienced the role of these outstanding professionals as my comrades, teammates to be embraced and celebrated, not as an enemy to be avoided whenever possible. That misguided perception of the title 'professional' is held by too many parents. As is the often inappropriate definition of 'parent' by the professional ranks. We both play a role in this unfortunate interchange, and it must change.
Saturday's experience left me with a renewed commitment to bring what are often opposing sides together in positive, respectful, caring ways that can help change children's lives for good. I am passionate about this work. It must be done if all children are to live better lives, period. No more excuses from the adults in their world for giving them anything less.
Music holds the power to transform all of our lives. It was true for my son; it is true for me; and at Saturday's conference, it was true for all those in attendance. As a writer, I sing with words. These professionals sing with great heart for a population that is too often undervalued and misunderstood. I applaud their work, their passion and their commitment. I applaud them. Like a parent trying to work through the roughest parenting patch to create a better world for their children with disabilities, the work of these music professionals is not always easy.
Truth be told, few programs can cause me to shout to the heavens about the incredible promise they hold for kids with special needs. Last Saturday, I was again reminded of why I love music therapy, and while no one profession can offer a panacea treatment for children with special needs or their families, this one sure comes close.
Tell someone you know and love about music therapy this week. It may just change a child's life -and your own.
Wouldn't that be grand??
Friday, March 17, 2006
Advocacy & Ability
As promised, here's the second entry to my new blog and my topics today include: Dana Reeve and BB King. This entry is being made a bit later than I had originally planned because the demands of new authordom have kept me slightly busy, but enjoying almost every second.
I can't even begin to put into words what it meant to me to see my book Breakthrough Parenting for Children with Special Needs: Raising the Bar of Expectations, with son's face commanding attention front and center in the parenting section at Barnes and Noble. There it was on the top shelf, face out, under Children with Special Needs, in a major bookstore located across from a major university that houses one of the premier programs for educating future teachers in the country. Wow, that's no small impact on an author/parent/advocate!
I assure you that I am rarely a person of few words, something to which my adoring, tolerant husband can certainly attest (probably quite loudly), but seeing Eric's incredible, smiling face enticing the young and the old, the browsers and the eager, wide-eyed, and sleep-deprived parents, as well as the discriminating book buyer was one amazing moment. I stood there staring at it for so long that I'm quite sure someone was worried about my possible intentions (was I about to walk out with the latest autism title in my purse? Not likely). I'm still digesting this life-defining moment... chances are good I'll blog more about on another day, but not quite yet...
As I took the elevater to the street level and floated out into the crisp night air, I couldn't help but whisper discreetly to my level-headed accountant husband, "Do you think anyone in the bookstore recognized me?! His have-you-completely-lost-your-mind? glance back quickly brought me back to earth with a great big fat painful thud.
There is absolutely no chance of me becoming a diva in my own household--zero, nada, no way, no matter how loudly I proclaim just how tough it is to get published through the old-fashioned literary means (by that I mean not by self publishing)! Like Rodney Dangerfield, I'm having trouble getting some props here among my immediate family possee...
Overall, this was still a remarkable evening, one that also included attending a terrific concert with BB King, part of the 80th Birthday tour by the legendary King of the Blues. My spouse is a great fan; I was less so, until last night. The man is simply amazing, as is his band, many of whom have played with BB for nearly 30 years! He can't move as fast and, in his own words, 'he's got bad knees, can't see so good and has diabetes, but he can still work his one good eye overtime to check out all the pretty ladies!' He may be eighty, but his pure talent has lost none of its youthful edge.
BB King was funny, charming, engaging, belting out the blues like a Sunday preacher frantically trying to save more than a few ragged souls- and as if his livelihood, and his alimony and child support payments, depended upon it. As I listened to the words of this singer/songwriter/poet/guitarist extraordinairre, I realized that BB King has lived through civil rights, the assasination of the Kennedy brothers, and Martin Luther King, and many other dramatic, defining times in our nation's history, but his youthful spark still commands attention, as does his love for his music and his enormous musical talent.
When King relayed the stark reality of being denied the right to play at this kind of fancy venue with such a grand stage years ago, I was reminded of the struggles still facing many minorities groups in 2006, including for those with special needs.
In that moment, I recalled my son's special needs journey and the value of what we now share with other families and the world through Breakthrough Parenting...and I fought back stinging tears of unresolved emotion from years of my own frustration at advocating for my son in a world that still has trouble seeing the value of a child with special needs. Music moves us in such powerful ways.
I remembered the time we took Eric to see BB King on a sultry summer night at Interlochen in Northern Michigan, where Eric's love for the guitar became incredibly evident, even as the draining 90 degree heat took its toll on him. As he sat in that confining wheelchair, sweat running through his hair, Eric's beaming smile said it all--the guitar, the music, and BB King, were way beyond cool!
BB King may be 80 years old, but he is still a young musician at heart. He loves what he does and exhibits a passion and gift for living life fully. It's an example to all of us about how to go on living, no matter what heavy bolders might get tossed in your face on this often unpredictable life journey.
I discovered a renewed respect for my son and his own love and talent for music that night-- Eric was one was cool dude, too!
Which brings me to the final entry of this day, Dana Reeve. With the death of this remarkable women a little more than a week old, this week's media if filled with photos of her life and tributes to her amazing legacy. I want to add my own words to the mix, short and sweet and with my respect for this amazing woman.
I didn't know Dana Reeve as well as many, yet probably knew her a bit better than many others because of an in-depth interview I conducted with her for my book shortly before Dana's lung cancer diagnosis was announced. It was my honor to include this mom/caregiver/singer/friend and advocate in the final chapter of my book, along with an interview with Timothy Shriver of Special Olympics because of what I (and others) view as their signficant efforts contributions to the increased awareness of and life opportunities for millions of people worldwide with special needs. I hope that each and every one of their words of wisdom and fire and spunk will inspire millions of families and others to create better lives for kids with special needs.
Dana Reeve was one of those rare human beings who leaves a nation of fans mourning her death, along with a remarkable legacy from which we can all learn, much like her husband's. So my response to this enormous loss for the special needs community, and the world, is a bit of a battle cry for those of us left to solider on. All of us who care deeply about what Dana Reeve stood for and for the cause and population she and Christopher Reeve served with such passion and grace and commitment while facing tremendous family challenges, must continue the work that they, and others in the human rights field, began. We must go forward, as Christopher Reeve said shortly before his death, and his wife after he left us. And go forward we shall. We owe these two remarkable human beings at least that much.
You can help continue the tireless work of the Christopher Reeve Foundation and the Paralysis Resource Center (Dana Reeve's baby & an invaluable resource that recently lost its federal funding) at christopherreeve.org. One person CAN make a difference in this world, even under the toughest of circumstances. Dana Reeve and her husband proved that to the world, and so much more.
Now go hug your children! And make it a week filled with purpose and passion and actions of advocacy for the things in life that really matter, and speak up for all those other voices who too often remain silent. And remember to show a child that you care deeply about his or her future every day of his or her life. 'Cause they're our future.
Powerful thought, huh?
I can't even begin to put into words what it meant to me to see my book Breakthrough Parenting for Children with Special Needs: Raising the Bar of Expectations, with son's face commanding attention front and center in the parenting section at Barnes and Noble. There it was on the top shelf, face out, under Children with Special Needs, in a major bookstore located across from a major university that houses one of the premier programs for educating future teachers in the country. Wow, that's no small impact on an author/parent/advocate!
I assure you that I am rarely a person of few words, something to which my adoring, tolerant husband can certainly attest (probably quite loudly), but seeing Eric's incredible, smiling face enticing the young and the old, the browsers and the eager, wide-eyed, and sleep-deprived parents, as well as the discriminating book buyer was one amazing moment. I stood there staring at it for so long that I'm quite sure someone was worried about my possible intentions (was I about to walk out with the latest autism title in my purse? Not likely). I'm still digesting this life-defining moment... chances are good I'll blog more about on another day, but not quite yet...
As I took the elevater to the street level and floated out into the crisp night air, I couldn't help but whisper discreetly to my level-headed accountant husband, "Do you think anyone in the bookstore recognized me?! His have-you-completely-lost-your-mind? glance back quickly brought me back to earth with a great big fat painful thud.
There is absolutely no chance of me becoming a diva in my own household--zero, nada, no way, no matter how loudly I proclaim just how tough it is to get published through the old-fashioned literary means (by that I mean not by self publishing)! Like Rodney Dangerfield, I'm having trouble getting some props here among my immediate family possee...
Overall, this was still a remarkable evening, one that also included attending a terrific concert with BB King, part of the 80th Birthday tour by the legendary King of the Blues. My spouse is a great fan; I was less so, until last night. The man is simply amazing, as is his band, many of whom have played with BB for nearly 30 years! He can't move as fast and, in his own words, 'he's got bad knees, can't see so good and has diabetes, but he can still work his one good eye overtime to check out all the pretty ladies!' He may be eighty, but his pure talent has lost none of its youthful edge.
BB King was funny, charming, engaging, belting out the blues like a Sunday preacher frantically trying to save more than a few ragged souls- and as if his livelihood, and his alimony and child support payments, depended upon it. As I listened to the words of this singer/songwriter/poet/guitarist extraordinairre, I realized that BB King has lived through civil rights, the assasination of the Kennedy brothers, and Martin Luther King, and many other dramatic, defining times in our nation's history, but his youthful spark still commands attention, as does his love for his music and his enormous musical talent.
When King relayed the stark reality of being denied the right to play at this kind of fancy venue with such a grand stage years ago, I was reminded of the struggles still facing many minorities groups in 2006, including for those with special needs.
In that moment, I recalled my son's special needs journey and the value of what we now share with other families and the world through Breakthrough Parenting...and I fought back stinging tears of unresolved emotion from years of my own frustration at advocating for my son in a world that still has trouble seeing the value of a child with special needs. Music moves us in such powerful ways.
I remembered the time we took Eric to see BB King on a sultry summer night at Interlochen in Northern Michigan, where Eric's love for the guitar became incredibly evident, even as the draining 90 degree heat took its toll on him. As he sat in that confining wheelchair, sweat running through his hair, Eric's beaming smile said it all--the guitar, the music, and BB King, were way beyond cool!
BB King may be 80 years old, but he is still a young musician at heart. He loves what he does and exhibits a passion and gift for living life fully. It's an example to all of us about how to go on living, no matter what heavy bolders might get tossed in your face on this often unpredictable life journey.
I discovered a renewed respect for my son and his own love and talent for music that night-- Eric was one was cool dude, too!
Which brings me to the final entry of this day, Dana Reeve. With the death of this remarkable women a little more than a week old, this week's media if filled with photos of her life and tributes to her amazing legacy. I want to add my own words to the mix, short and sweet and with my respect for this amazing woman.
I didn't know Dana Reeve as well as many, yet probably knew her a bit better than many others because of an in-depth interview I conducted with her for my book shortly before Dana's lung cancer diagnosis was announced. It was my honor to include this mom/caregiver/singer/friend and advocate in the final chapter of my book, along with an interview with Timothy Shriver of Special Olympics because of what I (and others) view as their signficant efforts contributions to the increased awareness of and life opportunities for millions of people worldwide with special needs. I hope that each and every one of their words of wisdom and fire and spunk will inspire millions of families and others to create better lives for kids with special needs.
Dana Reeve was one of those rare human beings who leaves a nation of fans mourning her death, along with a remarkable legacy from which we can all learn, much like her husband's. So my response to this enormous loss for the special needs community, and the world, is a bit of a battle cry for those of us left to solider on. All of us who care deeply about what Dana Reeve stood for and for the cause and population she and Christopher Reeve served with such passion and grace and commitment while facing tremendous family challenges, must continue the work that they, and others in the human rights field, began. We must go forward, as Christopher Reeve said shortly before his death, and his wife after he left us. And go forward we shall. We owe these two remarkable human beings at least that much.
You can help continue the tireless work of the Christopher Reeve Foundation and the Paralysis Resource Center (Dana Reeve's baby & an invaluable resource that recently lost its federal funding) at christopherreeve.org. One person CAN make a difference in this world, even under the toughest of circumstances. Dana Reeve and her husband proved that to the world, and so much more.
Now go hug your children! And make it a week filled with purpose and passion and actions of advocacy for the things in life that really matter, and speak up for all those other voices who too often remain silent. And remember to show a child that you care deeply about his or her future every day of his or her life. 'Cause they're our future.
Powerful thought, huh?
Wednesday, March 08, 2006
Intro to my Blog
If you would have told me a few months ago that I would be excited about beginning a blog, I would have said that you had clearly lost your mind. But the reality is that I haven’t been this excited about a new technology baby since I first got dragged kicking and screaming from an electric typewriter to a computer. That ground-breaking event immediately cut years (and mucho stress) off my obsessive editing process, a fact that my husband reminds me of often (C.P.A.s love technology!). That success left me game for trying new advances before they became really old advances! Guess you can teach an old puppy....
So now I am proclaiming Long Live the Blog!— within reason of course.
Let’s start this whole writing adventure off with three fairly simple questions?
Who the heck am I? And why on earth would I blog? What is the purpose of this blog?
First, I am the author of Breakthrough Parenting for Children with Special Needs: Raising the Bar of Expectations which has just been released by Jossey-Bass/Wiley (March 2006)).
I am also an award-winning journalist, speaker and advocate on special needs issues. I’ve been writing on this subject since 1990 after my second child was born and diagnosed with cerebral palsy. My book is dedicated to my remarkable life experiences with my son, Eric Winter, who passed away in 2003 at age 12. It was my challenging and incredibly rewarding life with Eric that led me to become passionate about improving the lives of children with special needs. There is a lot of work to be done…
So why blog?
Why not blog? It gives me a terrific opportunity to continue to share my thoughts on special needs— and I have many unexpressed thoughts on that subject (plus, my publisher thinks it’s a good idea!). I’ll explore a few other interesting daily life experiences with readers of my work and my fans (IF I have any), including the road to publication. I couldn’t fit everything in my book, so blogging will help fulfill my need to ramble on a wide range of subjects, something that has made me a pretty good columnist— a perfect venue for someone who always has an opinion to share, especially on subjects that far too few of us really want to talk about, like disability, grief and faith. I aim to help enlighten and inform and create much-needed discussion about some tough life issues, especially as it involves special needs.
I take the power of this forum seriously. You won’t catch me ranting on about what I had for dinner, the jerk that cut me off in traffic, or whether Madonna should have kissed Britney on live television (wasn’t my favorite TV moment). I want to comment about those things with the power to foster important and valuable societal change, especially as it relates to creating better lives for children with special needs— I am a champion of the underdog and darn proud of it.
The purpose of this blog can be summed up in three simple letters of the alphabet: IEP.
To those entrenched in the special needs world, IEP stands for an Individualized Education Program— three words that hold remarkable power to freak out a lot of parents and professionals. But I’m adding a new definition to IEP, aiming to make it more user-friendly: I vote for Increasingly Empowered Parent, Professional, or Person. This blog will explore exactly what that means and how we can each achieve it.
Fact is, I’m on a mission to improve the lives of those with special needs. But as determined and committed as I am to the cause, I can’t do it alone. This world need many more empowered parents, professionals and other people who care deeply about the rights of the disabled who are ready, willing and able to stand up and be accounted for, to speak for those who cannot or won’t speak for themselves. That’s how we will create societal change that is long overdue—and help kids with special needs reach their life dreams, too. It’s no easy cause to take on, but I’m doing my best to foster change that helps make these lofty goals a reality, and I hope you will join me.
I want all kids to live better lives, including those with special needs. That means the adults in their lives must take their roles more seriously, while upping their parenting and professional games. The impact that adults have on children is huge— and can last a lifetime, whether good or bad. My commitment is to actions that lead to good outcomes for all kids.
If you want to know more about how you can help redefine those nerve-wracking letters IEP, visit my website: www.JudyWinter.com. There’s enough there to get you started.
If you have a special needs subject you would like me to ramble on about (no shortage of topics there!), send me an email and I’ll do my best to talk rant about it in future blogs.
Be aware that my book has just been released, so my life is slightly hectic right now. I will try my best to blog at least once a week (no promises!), but check back weekly for fresh stuff. I promise my next ramble will be worth the space— a tribute to that remarkable human being and important special needs advocate, Dana Reeve. Now that is a subject worth blogging about….
In the meantime, do something great to fuel a child's self esteem this week!
So now I am proclaiming Long Live the Blog!— within reason of course.
Let’s start this whole writing adventure off with three fairly simple questions?
Who the heck am I? And why on earth would I blog? What is the purpose of this blog?
First, I am the author of Breakthrough Parenting for Children with Special Needs: Raising the Bar of Expectations which has just been released by Jossey-Bass/Wiley (March 2006)).
I am also an award-winning journalist, speaker and advocate on special needs issues. I’ve been writing on this subject since 1990 after my second child was born and diagnosed with cerebral palsy. My book is dedicated to my remarkable life experiences with my son, Eric Winter, who passed away in 2003 at age 12. It was my challenging and incredibly rewarding life with Eric that led me to become passionate about improving the lives of children with special needs. There is a lot of work to be done…
So why blog?
Why not blog? It gives me a terrific opportunity to continue to share my thoughts on special needs— and I have many unexpressed thoughts on that subject (plus, my publisher thinks it’s a good idea!). I’ll explore a few other interesting daily life experiences with readers of my work and my fans (IF I have any), including the road to publication. I couldn’t fit everything in my book, so blogging will help fulfill my need to ramble on a wide range of subjects, something that has made me a pretty good columnist— a perfect venue for someone who always has an opinion to share, especially on subjects that far too few of us really want to talk about, like disability, grief and faith. I aim to help enlighten and inform and create much-needed discussion about some tough life issues, especially as it involves special needs.
I take the power of this forum seriously. You won’t catch me ranting on about what I had for dinner, the jerk that cut me off in traffic, or whether Madonna should have kissed Britney on live television (wasn’t my favorite TV moment). I want to comment about those things with the power to foster important and valuable societal change, especially as it relates to creating better lives for children with special needs— I am a champion of the underdog and darn proud of it.
The purpose of this blog can be summed up in three simple letters of the alphabet: IEP.
To those entrenched in the special needs world, IEP stands for an Individualized Education Program— three words that hold remarkable power to freak out a lot of parents and professionals. But I’m adding a new definition to IEP, aiming to make it more user-friendly: I vote for Increasingly Empowered Parent, Professional, or Person. This blog will explore exactly what that means and how we can each achieve it.
Fact is, I’m on a mission to improve the lives of those with special needs. But as determined and committed as I am to the cause, I can’t do it alone. This world need many more empowered parents, professionals and other people who care deeply about the rights of the disabled who are ready, willing and able to stand up and be accounted for, to speak for those who cannot or won’t speak for themselves. That’s how we will create societal change that is long overdue—and help kids with special needs reach their life dreams, too. It’s no easy cause to take on, but I’m doing my best to foster change that helps make these lofty goals a reality, and I hope you will join me.
I want all kids to live better lives, including those with special needs. That means the adults in their lives must take their roles more seriously, while upping their parenting and professional games. The impact that adults have on children is huge— and can last a lifetime, whether good or bad. My commitment is to actions that lead to good outcomes for all kids.
If you want to know more about how you can help redefine those nerve-wracking letters IEP, visit my website: www.JudyWinter.com. There’s enough there to get you started.
If you have a special needs subject you would like me to ramble on about (no shortage of topics there!), send me an email and I’ll do my best to talk rant about it in future blogs.
Be aware that my book has just been released, so my life is slightly hectic right now. I will try my best to blog at least once a week (no promises!), but check back weekly for fresh stuff. I promise my next ramble will be worth the space— a tribute to that remarkable human being and important special needs advocate, Dana Reeve. Now that is a subject worth blogging about….
In the meantime, do something great to fuel a child's self esteem this week!
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