For many families, Spring brings with it the promise of increasing daylight hours, blooming flowers, fun outdoor activities, and thoughts of summer vacations-- and yes, an abundance of those pesky Individualized Education Program Team (IEPT) meetings that help state your child's goals and objectives and services for the next school year. (Sorry to sneak in the IEP with all that fun family stuff!).
The reality is that IEPs are often unnerving and frustrating events, even for the most well-prepared families. So here are five key tips to help you make the process a little less stressful, and increasingly productive. You can find more in my book Breakthrough Parenting for Children with Special Needs:Raising the Bar of Expectations.
Sometimes, the simplest actions can make you feel more empowered and effective!
First, you must believe in your child's value and their right to appropriate educational opportunities before ever setting foot in that meeting. Everything else stems from embracing this belief in your child. It will make you fearless. Do a gut check- what do you want for your child?
Educate yourself about the IEP process.
Do your homework before the meeting and answer the following questions: What exactly is an IEP? How important is it to your child? What does it include? What is your role in the process? How does the law support your child's educational needs? How does it all work? Several good resources can help you do just that, including: www.ed.gov.
Dress Professionally and Be on Time!
Listen without interrupting. Use good eye contact and sit up straight. Avoid profanity and threatening behaviors that escalate tension and do little if anything to help your child get what they need. Taking the high road can help you feel increasingly confident and competent in what is often an emotionally charged atmosphere. It may earn you more respect and support- and yes, even results. Look and act like the important team member that you are!
Use children-first language and request that others do the same. Don't allow others to define your child by disability or use limiting, negative labels and language to discuss him/her. Don't ignore your child's needs, but ask that all present address those needs in more positive, productive ways that focus on solutions, not problems. No child's potential should be limited because of negative perceptions from inappropriate or excessive use of labels.
Include your child in the IEPT meeting. They have a right to be there. It is their life everyone is discussing afterall.
Debrief after the meeting.
These meetings can take your breath away- and not in a good way! Adenaline is pumping and stress levels are high, no matter how well it all seemed to go. Take time to refuel and recover by doing something fun. Go out for pizza, take a walk, watch funny movies, or read your child his/her favorite story. End your day with some much-needed balance.
One final note: Never skip out on your child's IEPT meetings! If you don't care enough to advocate for your child's best future, and yours, why should anyone else? Make a better choice- one worthy of your child!
Remember: You are your child's first and most important teacher-and not just for a school year, but for life.
JudyWinter.com
Breakthrough Parenting for Children with Special Needs: Raising the Bar of Expectations
Wednesday, April 11, 2007
Tuesday, April 10, 2007
Today is National Sibling Day 2007
Did you know that today is National Sibling Day?
That presents a great opportunity for families to recognize and celebrate the important sibling bond, especially in families with special needs. Perhaps in no other family is the sibling bond so incedibly challenged, yet so remarkably rewarding. The emotional and physical challenges these brothers and sisters face together often build a rock-solid bond and fierce loyalty that is too rarely understood by the rest of the world. It's often an inspiring bond to witness.
Take some time today to check in with all of the sibs in your household and talk about the gifts that come from the special sibling bond, regardless of the daily challenges presented. Perhaps this is a great time to open up that honest discussion, too.
Siblings in families living with special needs are my heroes. Today, I salute their valuable, life-changing roles!
They serve as a much-needed example to all of us.
For more information about siblings and special needs, including SIBSHOPS visit: The Sibling Support Project of the ARC of the United States, at www.siblingsupport.org
JudyWinter.com
Breakthrough Parenting for Children with Special Needs: Raising the Bar of Expectations
That presents a great opportunity for families to recognize and celebrate the important sibling bond, especially in families with special needs. Perhaps in no other family is the sibling bond so incedibly challenged, yet so remarkably rewarding. The emotional and physical challenges these brothers and sisters face together often build a rock-solid bond and fierce loyalty that is too rarely understood by the rest of the world. It's often an inspiring bond to witness.
Take some time today to check in with all of the sibs in your household and talk about the gifts that come from the special sibling bond, regardless of the daily challenges presented. Perhaps this is a great time to open up that honest discussion, too.
Siblings in families living with special needs are my heroes. Today, I salute their valuable, life-changing roles!
They serve as a much-needed example to all of us.
For more information about siblings and special needs, including SIBSHOPS visit: The Sibling Support Project of the ARC of the United States, at www.siblingsupport.org
JudyWinter.com
Breakthrough Parenting for Children with Special Needs: Raising the Bar of Expectations
Sunday, April 08, 2007
Congratulations to NCAA Champs the MSU Hockey Team!
Congratulations to the Michigan State Spartans who got themselves a shiny new 2007 NCAA title! No, not in football, not in basketball (men's or women's) but for HOCKEY! Who would have thunk it????
Kudos to my Spartans who beat Boston College 3-1 last night.
GO GREEN!
JudyWinter.com
Breakthrough Parenting for Children with Special Needs: Raising the Bar of Expectations
Kudos to my Spartans who beat Boston College 3-1 last night.
GO GREEN!
JudyWinter.com
Breakthrough Parenting for Children with Special Needs: Raising the Bar of Expectations
Easter 2007
One of the things I love most about Easter, (besides decadent chocolate coconut eggs!), is the focus on spiritual renewal and new life. That gives us permission to experience our own seasonal rebirth, something especially comforting after a long, dreary Winter, or abstaining from red wine for Lent!
We get the chance to start anew, again!
No matter what other bad news is going on in our dangerous world, Spring always brings with it the marvel of new life. There's those spunky little flowers that push boldly through frozen ground, or swelling buds on tree branches that moments before seemed barren, and birds singing sweet melodies confidently at dawn, replacing all those annoying alarm clocks. Nature's orchestra is in full production with a glorious show worthy of Broadway- one not to be missed!
Dare I say it's even magical?
This week, take a needed break from your daily grind, the 24/7 news reports, and those worries about your child's next unnerving IEPT meeting, and notice the rites of Spring unfolding in your own backyard. Explore its meaning for your own life. Then start fresh.
Because after all the chocolate bunnies, marshmellow peeps, and grandma's leftover ambrosia salad and salty ham have been consumed, rebirth is the empowering message of Spring.
Try hard not to miss it.
Happy Easter!
JudyWinter.com
Breakthrough Parenting for Children with Special Needs: Raising the Bar of Expectations
We get the chance to start anew, again!
No matter what other bad news is going on in our dangerous world, Spring always brings with it the marvel of new life. There's those spunky little flowers that push boldly through frozen ground, or swelling buds on tree branches that moments before seemed barren, and birds singing sweet melodies confidently at dawn, replacing all those annoying alarm clocks. Nature's orchestra is in full production with a glorious show worthy of Broadway- one not to be missed!
Dare I say it's even magical?
This week, take a needed break from your daily grind, the 24/7 news reports, and those worries about your child's next unnerving IEPT meeting, and notice the rites of Spring unfolding in your own backyard. Explore its meaning for your own life. Then start fresh.
Because after all the chocolate bunnies, marshmellow peeps, and grandma's leftover ambrosia salad and salty ham have been consumed, rebirth is the empowering message of Spring.
Try hard not to miss it.
Happy Easter!
JudyWinter.com
Breakthrough Parenting for Children with Special Needs: Raising the Bar of Expectations
Thursday, April 05, 2007
Calling all Artists Ages 16-25 with Disabilities!
Calling all artists ages 16-25 with special needs!
VSA Arts (I LOVE this organization!) is holding a 'National Juried Exhibition for Young Artists With Disabilities'. The theme is 'Driven'. The exhibition is sponsored by Volkswagen of America Inc., and there are big cash prizes!!
Postmarked deadline is June 29, 2007. So get busy!
To find out more, visit www.vsarts.org
Good luck!
JudyWinter.com
Breakthrough Parenting for Children with Special Needs: Raising the Bar of Expectations
VSA Arts (I LOVE this organization!) is holding a 'National Juried Exhibition for Young Artists With Disabilities'. The theme is 'Driven'. The exhibition is sponsored by Volkswagen of America Inc., and there are big cash prizes!!
Postmarked deadline is June 29, 2007. So get busy!
To find out more, visit www.vsarts.org
Good luck!
JudyWinter.com
Breakthrough Parenting for Children with Special Needs: Raising the Bar of Expectations
National Public Radio Airs Piece on Eunice Kennedy Shriver
Kudos to National Public Radio's (NPR) Morning Edition for airing a well-deserved and well-produced piece today about Eunice Kennedy Shriver and her on-going work with Special Olympics.
I am a huge fan of this terrific woman and the organization she began as Camp Shriver in her backyard decades ago. Ms. Shriver has been one of my role models and a stellar example as I pursue my own passionate work on behalf of those with special needs. That's why I included a special tribute to Eunice Kennedy Shriver and Special Olympics (and an insightful interview with her son, Timothy Shriver, Chairman of the Board of Special Olympics) in my book Breakthrough Parenting for Children with Special Needs: Raising the Bar of Expectations.
If you want to be reminded of the power of one person to take on a huge social justice issue and impact lasting, critical change, do yourself a favor and check out this morning's piece at www.npr.org- and be sure to read the tribute in my book, too!
I feel better just knowing that Eunice Kennedy Shriver, and her family, are at work in the world. These people are terrific examples for the rest of us.
Now, what are you doing today to change a child's life?
JudyWinter.com
Breakthrough Parenting for Children with Special Needs: Raising the Bar of Expectations
I am a huge fan of this terrific woman and the organization she began as Camp Shriver in her backyard decades ago. Ms. Shriver has been one of my role models and a stellar example as I pursue my own passionate work on behalf of those with special needs. That's why I included a special tribute to Eunice Kennedy Shriver and Special Olympics (and an insightful interview with her son, Timothy Shriver, Chairman of the Board of Special Olympics) in my book Breakthrough Parenting for Children with Special Needs: Raising the Bar of Expectations.
If you want to be reminded of the power of one person to take on a huge social justice issue and impact lasting, critical change, do yourself a favor and check out this morning's piece at www.npr.org- and be sure to read the tribute in my book, too!
I feel better just knowing that Eunice Kennedy Shriver, and her family, are at work in the world. These people are terrific examples for the rest of us.
Now, what are you doing today to change a child's life?
JudyWinter.com
Breakthrough Parenting for Children with Special Needs: Raising the Bar of Expectations
Sunday, March 18, 2007
MTV Program: True Life: I'm Autistic
I admit that I'm not always a fan of MTV programming, but I applaud what they aired on March 18th. The program True Life: I'm Autistic profiles the lives of three teens living with varying degrees of autism spectrum disorder (ASD) as they go about their daily lives and pursue their dreams.
The remarkable young men include:
Jeremy, 17, who uses a simple portable speech machine that allows him to finally communicate directly with his peers.
Jonathan is an autistic savant, the term used to describe someone who has a significant disability and exceptional talent. Jonathan's talent is painting.
Elijah is 16 and has Asperger's symdrome, the term applied to higher-functioning autism. He wants to be a stand-up comedian.
The program does an outstanding job of letting the story tell itself as each of these young adults, with the amazing support of their incredible parents, pursue their life dreams in the face of a complex, often frustrating disability.
For more information on the program, and to view a clip of this terrific show, visit the MTV website: http://www.mtv.com/ontv/dyn/truelife/series.jhtml
This is the kind of responsible programming that MTV can be proud of- and a valuable media effort that can help others have a greater appreciation for and understanding of autism and other disabilities.
Another terrific resource for those interested in learning more about autism is the documentary Normal People Scare Me. For more information on this and other important film projects in the works by the mother/son film team of Keri Bowers and 17-year-old Taylor Cross, who has autism, visit: normalfilms.com.
Both looks are worthy of your time!
JudyWinter.com
Breakthrough Parenting for Children with Special Needs: Raising the Bar of Expectations
The remarkable young men include:
Jeremy, 17, who uses a simple portable speech machine that allows him to finally communicate directly with his peers.
Jonathan is an autistic savant, the term used to describe someone who has a significant disability and exceptional talent. Jonathan's talent is painting.
Elijah is 16 and has Asperger's symdrome, the term applied to higher-functioning autism. He wants to be a stand-up comedian.
The program does an outstanding job of letting the story tell itself as each of these young adults, with the amazing support of their incredible parents, pursue their life dreams in the face of a complex, often frustrating disability.
For more information on the program, and to view a clip of this terrific show, visit the MTV website: http://www.mtv.com/ontv/dyn/truelife/series.jhtml
This is the kind of responsible programming that MTV can be proud of- and a valuable media effort that can help others have a greater appreciation for and understanding of autism and other disabilities.
Another terrific resource for those interested in learning more about autism is the documentary Normal People Scare Me. For more information on this and other important film projects in the works by the mother/son film team of Keri Bowers and 17-year-old Taylor Cross, who has autism, visit: normalfilms.com.
Both looks are worthy of your time!
JudyWinter.com
Breakthrough Parenting for Children with Special Needs: Raising the Bar of Expectations
Spartans Make Us Proud
Okay, so my Spartans came up a bit short against UNC in last night's NCAA Round two game. But they gave us a thrill, leaving everything they had on the court and allowing even the most doubting fan to believe that the seemingly impossible might just happen afterall. What a thrill ride!
Like most Spartan fans today, I couldn't be prouder of this team. They showed guts and resiliency, tons of class, and a never-give-up attitude, a tribute to their terrific coaching. The best news for Spartan fans this morning is the realization that all that tremendous talent, plus some new blood, is coming back.
Last night, this group of exceptional young men gave the nation a preview of coming attractions. The Spartans served notice--they will be back. And while MSU may have ultimately been beaten by a deeper bench and some remarkable athletic talent, in no way is this team a loser.
If there's one thing I love it's seeing a perceived underdog rise above the tough odds, silence the naysayers and create some magic. That's just what this team did in 2006/07. Unfortunately, this Cinderella story ended too soon
But just wait until next year....
Congratulations to Coach Izzo and the men's MSU Spartan Basketball Team! Thanks for another great season!
JudyWinter.com
Breakthrough Parenting for Children with Special Needs: Raising the Bar of Expectations
Like most Spartan fans today, I couldn't be prouder of this team. They showed guts and resiliency, tons of class, and a never-give-up attitude, a tribute to their terrific coaching. The best news for Spartan fans this morning is the realization that all that tremendous talent, plus some new blood, is coming back.
Last night, this group of exceptional young men gave the nation a preview of coming attractions. The Spartans served notice--they will be back. And while MSU may have ultimately been beaten by a deeper bench and some remarkable athletic talent, in no way is this team a loser.
If there's one thing I love it's seeing a perceived underdog rise above the tough odds, silence the naysayers and create some magic. That's just what this team did in 2006/07. Unfortunately, this Cinderella story ended too soon
But just wait until next year....
Congratulations to Coach Izzo and the men's MSU Spartan Basketball Team! Thanks for another great season!
JudyWinter.com
Breakthrough Parenting for Children with Special Needs: Raising the Bar of Expectations
Saturday, March 17, 2007
Go Green!! ...Spartans not Leprechauns
Sometimes you just gotta put aside your focus on all things special needs and try to put some much-needed balance back into your life. That's what I'm doing today.
I'm a wee bit Irish (aren't most us?!?) so my focus today is all about being green. But I'm not talking about the green of Leprechaun lore and colorful beverages that make you a wee bit giddy.
I'm talking about MSU Spartan basketball!
I admit I'm not much of a sports fan, although I have suddenly adopted my husband's life-long passion for Tiger baseball. You live together long enough, and those kind of strange things begin to happen.
But I do love my Michigan State Spartans (my alma mater). I'm a big fan of coach Tom Izzo, who with all his coaching fame seems to still have his head on straight, and his ego in check. Plus, he's built a terrific program focused on nurturing, even demanding, the responsible growth of his players both on and off the court, something alone worthy of recognition. Each year, Izzo's program is filled with talent, integrity and class, and good kids.
How often can we use those words when talking sports today?
NCAA tourney time, complete with the Green & White, comes along just when us hearty Michiganders are in desperate need of some real proof that winter weather is almost history. That sleepy groundhog 'Pete' just loves tormenting us with that all shadow no shadow stuff...... But if Tourney time is here, it must be Spring, right?
Today, my team, a #9 seed, is clearly the underdog in the NCAA round two game with the highly favored #1 seed, North Carolina. That's a fact, we know it because they say it's so in all that rabid media coverage by all those people supposedly in the know.
But the Spartans and their die-hard fans are used to being underdogs, especially during football season when we have to boldy face my twin sister's alma mater, the Michigan Wolverines. That record? Not so great.
But we're talking basketball now, folks. Being the underdog is a role that we Spartan fans even relish at times. It makes us who we are. 'Cause just when the bulk of the positive kudos is going to the other team, the big Green machine likes to sneak up and spoil the party-- and screw up the odds.
And that's exactly what those of us who bleed Green/White are hoping will happen tonight!
Afterall, today is St. Patrick's Day, the day when we celebrate and honor all things green, right? And there's nary a Wolverine in sight....
Go Spartans!
May the Luck 'O the Irish be with you tonight!
JudyWinter.com
Breakthrough Parenting for Children with Special Needs: Raising the Bar of Expectations
I'm a wee bit Irish (aren't most us?!?) so my focus today is all about being green. But I'm not talking about the green of Leprechaun lore and colorful beverages that make you a wee bit giddy.
I'm talking about MSU Spartan basketball!
I admit I'm not much of a sports fan, although I have suddenly adopted my husband's life-long passion for Tiger baseball. You live together long enough, and those kind of strange things begin to happen.
But I do love my Michigan State Spartans (my alma mater). I'm a big fan of coach Tom Izzo, who with all his coaching fame seems to still have his head on straight, and his ego in check. Plus, he's built a terrific program focused on nurturing, even demanding, the responsible growth of his players both on and off the court, something alone worthy of recognition. Each year, Izzo's program is filled with talent, integrity and class, and good kids.
How often can we use those words when talking sports today?
NCAA tourney time, complete with the Green & White, comes along just when us hearty Michiganders are in desperate need of some real proof that winter weather is almost history. That sleepy groundhog 'Pete' just loves tormenting us with that all shadow no shadow stuff...... But if Tourney time is here, it must be Spring, right?
Today, my team, a #9 seed, is clearly the underdog in the NCAA round two game with the highly favored #1 seed, North Carolina. That's a fact, we know it because they say it's so in all that rabid media coverage by all those people supposedly in the know.
But the Spartans and their die-hard fans are used to being underdogs, especially during football season when we have to boldy face my twin sister's alma mater, the Michigan Wolverines. That record? Not so great.
But we're talking basketball now, folks. Being the underdog is a role that we Spartan fans even relish at times. It makes us who we are. 'Cause just when the bulk of the positive kudos is going to the other team, the big Green machine likes to sneak up and spoil the party-- and screw up the odds.
And that's exactly what those of us who bleed Green/White are hoping will happen tonight!
Afterall, today is St. Patrick's Day, the day when we celebrate and honor all things green, right? And there's nary a Wolverine in sight....
Go Spartans!
May the Luck 'O the Irish be with you tonight!
JudyWinter.com
Breakthrough Parenting for Children with Special Needs: Raising the Bar of Expectations
Thursday, March 15, 2007
San Francisco/Bay Area Campaign- A Writer's Dream!
If there's one thing you learn fast as an author in today's publishing world it's this: If you want your book to stay alive in the competitive publishing marketplace, you had better be willing to help promote and market it, continually. (Btw: that often means hiring a publicist, so budget for it! I'm fortunate to have Kathlene Carney on my team. But I digress...).
I know most wannabe authors don't want to hear about their role in promotion and marketing. Afterall, most writers would rather be sitting on their behinds doing what they love most--writing. I understand well that passionate, creative, gypsy like urge that makes us want to hide out and weave words together.
It is what we do, afterall.
But promo/marketing/media interviews is part of today's publishing world. It goes with the new territory and those expecting otherwise (with rare exceptions of the 'Harry Potter' magnitude) will be disappointed, even disallusioned if left unprepared for this surprising reality.
Like other businesses, the publishing industry is dealing with on-going reductions in budgets, staffing and bottom lines. That means authors are expected to step up and fill the void. Plus, authors know their work best. No one is as vested in the book's outcome or how it is received in the public eye than the writer, who lives and breathes the work for months, even years. Once the flush of the initial publishing courtship dance is over, the new author must promote, too.
That said, I've just completed one national radio campaign, although some of the interviews are still to air. Everyone I worked with was terrific! But I'm already movin on. After a few stops in between, including the Bucks County Conference near Philly, I'll be heading to the San Francisco/Bay area in April, and I couldn't be more delighted. The Bay area is home to my publisher, my editor, my publicist, and until recently, my agent, who's now exploring life in Oregon.
Lots of good folks call the Golden State home, and I have been the beneficiary of some of their great publishing expertise. Plus, it's just beautiful country. It's no wonder people leave their hearts there...
In case you want to know more, here's that campaign info!
SAN FRANCISCO CAMPAIGN
(Please check back often – schedule subject to daily updates.)
Judy Winter, award-winning writer, national speaker and the author of Breakthrough Parenting for Children with Special Needs: Raising the Bar of Expectations, will hold a talk and book signing at Towne Center Books, 555 Main Street, in Pleasanton, CA on Friday, April 20th at 1 p.m., and at the Pleasanton Library, 400 Bernal Avenue, CA on Monday, April 16th at 7 p.m. The author will also be a guest on the KNTV program Bay Area Today on Monday, April 16th and on KGO-TV's The View from the Bay on Tuesday, April 17th. Judy will conclude her visit to the Bay area with a presentation at the Resolve NC Adoption Pathways Symposium at the Bay School Campus in San Francisco on Saturday, April 21st. For more on Judy's schedule and her on-going work on special needs, visit: JudyWinter.com.
Detailed Schedule:
Monday, 4/16/07-Bay Area Today-NBC Affiliate KNTV-TV/ 10 a.m. to 11 a.m.
Monday, 4/16/07—Public Affairs Show, Alice • KLLC, Live 105, and Movin' 99.7 (Taped-TBA) • San Francisco, CA
Monday, 4/16/07—Author Event • 7 p.m. • Pleasanton Library • Pleasanton, CA
Tuesday, 4/17/07-Benefit Magazine Radio Show with Ruby Rippey Tourk/ Interview Taped-Airdate TBA /San Francisco, CA
Tuesday, 4/17/07-Guest on The View from the Bay, KGO-TV (ABC affiliate), 3-4 p.m. PT/ San Francisco, CA
Thursday, 4/19/07—Conversations with Robin Fahr, TV30 Tri-Valley Community Television (Taped-TBA) • Pleasanton, CA
Friday, 4/20/07—Author Event/Signing • 1 p.m. • Towne Center Books • Pleasanton, CA
Saturday, 4/21/07—Presentation/Book Signing: Adoption Pathways Symposium/The Bay School Campus • San Francisco CA a.m.
Saturday, 4/21/07-Interview with Peter Finch-KFOG Morning Show, San Francisco, CA/(Interview taped-Airdate TBA)
PLUS-Another Interview on the East Coast!
Friday, March 30: Live Interview on The Lisa Birnbach Show / 9:15 to 9:45 a.m./ New York City/ http://greenstoneradio.com
JudyWinter.com
Breakthrough Parenting for Children with Special Needs: Raising the Bar of Expectations
I know most wannabe authors don't want to hear about their role in promotion and marketing. Afterall, most writers would rather be sitting on their behinds doing what they love most--writing. I understand well that passionate, creative, gypsy like urge that makes us want to hide out and weave words together.
It is what we do, afterall.
But promo/marketing/media interviews is part of today's publishing world. It goes with the new territory and those expecting otherwise (with rare exceptions of the 'Harry Potter' magnitude) will be disappointed, even disallusioned if left unprepared for this surprising reality.
Like other businesses, the publishing industry is dealing with on-going reductions in budgets, staffing and bottom lines. That means authors are expected to step up and fill the void. Plus, authors know their work best. No one is as vested in the book's outcome or how it is received in the public eye than the writer, who lives and breathes the work for months, even years. Once the flush of the initial publishing courtship dance is over, the new author must promote, too.
That said, I've just completed one national radio campaign, although some of the interviews are still to air. Everyone I worked with was terrific! But I'm already movin on. After a few stops in between, including the Bucks County Conference near Philly, I'll be heading to the San Francisco/Bay area in April, and I couldn't be more delighted. The Bay area is home to my publisher, my editor, my publicist, and until recently, my agent, who's now exploring life in Oregon.
Lots of good folks call the Golden State home, and I have been the beneficiary of some of their great publishing expertise. Plus, it's just beautiful country. It's no wonder people leave their hearts there...
In case you want to know more, here's that campaign info!
SAN FRANCISCO CAMPAIGN
(Please check back often – schedule subject to daily updates.)
Judy Winter, award-winning writer, national speaker and the author of Breakthrough Parenting for Children with Special Needs: Raising the Bar of Expectations, will hold a talk and book signing at Towne Center Books, 555 Main Street, in Pleasanton, CA on Friday, April 20th at 1 p.m., and at the Pleasanton Library, 400 Bernal Avenue, CA on Monday, April 16th at 7 p.m. The author will also be a guest on the KNTV program Bay Area Today on Monday, April 16th and on KGO-TV's The View from the Bay on Tuesday, April 17th. Judy will conclude her visit to the Bay area with a presentation at the Resolve NC Adoption Pathways Symposium at the Bay School Campus in San Francisco on Saturday, April 21st. For more on Judy's schedule and her on-going work on special needs, visit: JudyWinter.com.
Detailed Schedule:
Monday, 4/16/07-Bay Area Today-NBC Affiliate KNTV-TV/ 10 a.m. to 11 a.m.
Monday, 4/16/07—Public Affairs Show, Alice • KLLC, Live 105, and Movin' 99.7 (Taped-TBA) • San Francisco, CA
Monday, 4/16/07—Author Event • 7 p.m. • Pleasanton Library • Pleasanton, CA
Tuesday, 4/17/07-Benefit Magazine Radio Show with Ruby Rippey Tourk/ Interview Taped-Airdate TBA /San Francisco, CA
Tuesday, 4/17/07-Guest on The View from the Bay, KGO-TV (ABC affiliate), 3-4 p.m. PT/ San Francisco, CA
Thursday, 4/19/07—Conversations with Robin Fahr, TV30 Tri-Valley Community Television (Taped-TBA) • Pleasanton, CA
Friday, 4/20/07—Author Event/Signing • 1 p.m. • Towne Center Books • Pleasanton, CA
Saturday, 4/21/07—Presentation/Book Signing: Adoption Pathways Symposium/The Bay School Campus • San Francisco CA a.m.
Saturday, 4/21/07-Interview with Peter Finch-KFOG Morning Show, San Francisco, CA/(Interview taped-Airdate TBA)
PLUS-Another Interview on the East Coast!
Friday, March 30: Live Interview on The Lisa Birnbach Show / 9:15 to 9:45 a.m./ New York City/ http://greenstoneradio.com
JudyWinter.com
Breakthrough Parenting for Children with Special Needs: Raising the Bar of Expectations
Tuesday, March 13, 2007
Facing the Unexpected
Do you have those days when you wonder if the universe is working overtime in the tough-news department solely for your benefit?
I'm not talking about what's being covered by Wolf Blitzer in the CNN Situation Room. I'm talking about the kind of real-life drama that immediately disrupts our daily personal lives and schedules and messes with our heads-- and with our hearts, no matter what other wonderful stuff is coming our way.
In the past few weeks, I have taken in the shocking news/funeral of the suicide of a friend's teenage son, the threat by another, breast cancer within my closest inner circle, a friend's surgery, the senseless murder of the wonderful gallery owner of the charming venue where I held my book release party last year, and the fourth anniversary of my son's death. All this, while good things continue to happen in my professional life.
It can be tough to catch your breath or enjoy your successes when this kind of news just keeps on coming at you. Unfortunately, I've had more than my share of practice in coping with bad news in life. Perhaps, that makes me more skilled than most when it comes to survival.
This kind of news always serves as a humble reminder of how fragile life really is, and how important it is that we live it well each day. Someone more jaded might call these simple words trite. My life experiences has proved them true.
When life deals us and those closest to us the toughest of news, how do we cope well? How do we boldy emerge from under the covers and take on the dicey adventures of another day?
Me? Well first, I take a really deep breath or two and then let them out, along with some powerful tears, a few choice words and ultimately a prayer. Then, I go write. 'Cause purging myself through the written word is how I have always coped best with life's sometimes crummy, unpredictable twists and turns.
Writing it all down completely unedited never fails to help me set my emotional demons free and regain my footing....at least for a little while. That footing then allows me to move forward in more productive ways, maybe even offer a much-needed shoulder, some chicken soup, or supportive words on a beautiful card to a hurting friend. That kind of human action and warm touch offers healing both ways.
Now, how about you?
JudyWinter.com
Breakthrough Parenting for Children with Special Needs: Raising the Bar of Expectations
I'm not talking about what's being covered by Wolf Blitzer in the CNN Situation Room. I'm talking about the kind of real-life drama that immediately disrupts our daily personal lives and schedules and messes with our heads-- and with our hearts, no matter what other wonderful stuff is coming our way.
In the past few weeks, I have taken in the shocking news/funeral of the suicide of a friend's teenage son, the threat by another, breast cancer within my closest inner circle, a friend's surgery, the senseless murder of the wonderful gallery owner of the charming venue where I held my book release party last year, and the fourth anniversary of my son's death. All this, while good things continue to happen in my professional life.
It can be tough to catch your breath or enjoy your successes when this kind of news just keeps on coming at you. Unfortunately, I've had more than my share of practice in coping with bad news in life. Perhaps, that makes me more skilled than most when it comes to survival.
This kind of news always serves as a humble reminder of how fragile life really is, and how important it is that we live it well each day. Someone more jaded might call these simple words trite. My life experiences has proved them true.
When life deals us and those closest to us the toughest of news, how do we cope well? How do we boldy emerge from under the covers and take on the dicey adventures of another day?
Me? Well first, I take a really deep breath or two and then let them out, along with some powerful tears, a few choice words and ultimately a prayer. Then, I go write. 'Cause purging myself through the written word is how I have always coped best with life's sometimes crummy, unpredictable twists and turns.
Writing it all down completely unedited never fails to help me set my emotional demons free and regain my footing....at least for a little while. That footing then allows me to move forward in more productive ways, maybe even offer a much-needed shoulder, some chicken soup, or supportive words on a beautiful card to a hurting friend. That kind of human action and warm touch offers healing both ways.
Now, how about you?
JudyWinter.com
Breakthrough Parenting for Children with Special Needs: Raising the Bar of Expectations
Sunday, March 11, 2007
March is Brain Injury Awareness Month
Did you know that March is Brain Injury Awareness Month?
Traumatic Brain Injury, or TBI as it's more commonly known, is one of those injuries that can happen to anyone at anytime. If you or a family member is living with the results of a traumatic brain injury, first, know that you are not alone. According to the Centers for Disease Control (CDC) each year approximately 1.4 million Americans sustain a blow or injury to the brain that may result in on-going special needs.
For more information on living with TBI, visit the Brain Injury Association of America where you can download a free Brain Injury Awareness Month Kit: http://www.biausa.org/Pages/biam2005.html.
And please, make sure that your kids, and you, wear helmets when riding bikes and scooters or engaging in risky sports. That's just one way that you can help reduce the chances that a TBI will impact the lives of those you love most.
This is one disability that you can help prevent.
JudyWinter.com
Breakthrough Parenting for Children with Special Needs: Raising the Bar of Expectations
Traumatic Brain Injury, or TBI as it's more commonly known, is one of those injuries that can happen to anyone at anytime. If you or a family member is living with the results of a traumatic brain injury, first, know that you are not alone. According to the Centers for Disease Control (CDC) each year approximately 1.4 million Americans sustain a blow or injury to the brain that may result in on-going special needs.
For more information on living with TBI, visit the Brain Injury Association of America where you can download a free Brain Injury Awareness Month Kit: http://www.biausa.org/Pages/biam2005.html.
And please, make sure that your kids, and you, wear helmets when riding bikes and scooters or engaging in risky sports. That's just one way that you can help reduce the chances that a TBI will impact the lives of those you love most.
This is one disability that you can help prevent.
JudyWinter.com
Breakthrough Parenting for Children with Special Needs: Raising the Bar of Expectations
Thursday, March 08, 2007
Honoring Dana Reeve's Legacy
Amid all the so-called news about Britney and Anna Nicole and yet another American Idol controversy, it hardly seems possible that this week also represents the first anniversary of the death of someone worthy of our attention.
Dana Reeve was a remarkable human being, and one great example of how to live life well under the toughest of circumstances. At a time when our society is in dire need of positive role models, Dana Reeve is deserving of our pause, our reflection and yes, our news coverage. As I continue my work on special needs, Dana Reeve remains one of my greatest life examples and I will not forget her.
It seems like only yesterday that the shocking news of her lung cancer diagnosis, and ultimately her death, was reported in the media. Because I had interviewed Dana Reeve for my book Breakthrough Parenting for Children with Special Needs just weeks before her diagnosis, the news hit me hard. The loss of both Christopher and Dana Reeve was a blow to those of us who care deeply about improving the lives of individuals with special needs.
Few in history have done as much as this terrific twosome did to create much-needed awareness of the value of those with special needs. They recognized the critical need for good research, resources and support to address the daily struggles faced by millions of people with disabilities worldwide. They made crucial political inroads with policy makers in Washington.
Their passionate, ground-breaking work and advocacy should never be forgotten. It must continue. Theirs is a solid foundation upon which other valuable special needs advocay work is being built today.
In the words of Christopher Reeve, we must go forward.
That's why I encourage you to recognize this important anniversary by supporting the work of their foundation, work that is today spearheaded, in part, by the Reeve's children. To learn more about about how you can help honor the lives of these two special needs giants and continue their legacy, please visit what is now called the Christopher and Dana Reeve Foundation at www.christopherreeve.org, and consider giving a gift. It's one simple way to make sure that your voice is heard, too.
That is exactly what I am going to do...cause I am so over the whole idea of Britney and Anna Nicole and naughty girls gone American Idol as newsworthy...
Please join me in paying tribute to something that really matters.
Breakthrough Parenting for Children with Special Needs: Raising the Bar of Expectations
JudyWinter.com
Dana Reeve was a remarkable human being, and one great example of how to live life well under the toughest of circumstances. At a time when our society is in dire need of positive role models, Dana Reeve is deserving of our pause, our reflection and yes, our news coverage. As I continue my work on special needs, Dana Reeve remains one of my greatest life examples and I will not forget her.
It seems like only yesterday that the shocking news of her lung cancer diagnosis, and ultimately her death, was reported in the media. Because I had interviewed Dana Reeve for my book Breakthrough Parenting for Children with Special Needs just weeks before her diagnosis, the news hit me hard. The loss of both Christopher and Dana Reeve was a blow to those of us who care deeply about improving the lives of individuals with special needs.
Few in history have done as much as this terrific twosome did to create much-needed awareness of the value of those with special needs. They recognized the critical need for good research, resources and support to address the daily struggles faced by millions of people with disabilities worldwide. They made crucial political inroads with policy makers in Washington.
Their passionate, ground-breaking work and advocacy should never be forgotten. It must continue. Theirs is a solid foundation upon which other valuable special needs advocay work is being built today.
In the words of Christopher Reeve, we must go forward.
That's why I encourage you to recognize this important anniversary by supporting the work of their foundation, work that is today spearheaded, in part, by the Reeve's children. To learn more about about how you can help honor the lives of these two special needs giants and continue their legacy, please visit what is now called the Christopher and Dana Reeve Foundation at www.christopherreeve.org, and consider giving a gift. It's one simple way to make sure that your voice is heard, too.
That is exactly what I am going to do...cause I am so over the whole idea of Britney and Anna Nicole and naughty girls gone American Idol as newsworthy...
Please join me in paying tribute to something that really matters.
Breakthrough Parenting for Children with Special Needs: Raising the Bar of Expectations
JudyWinter.com
Tuesday, January 23, 2007
National Radio Campaign Schedule for Breakthrough Parenting
For those of you who would like to hear me talk about my book Breakthrough Parenting for Children with Special Needs: Raising the Bar of Expectations check out my 2007 National Talk Radio Schedule below. You can check for regular updates on my website JudyWinter.com. You can also find my 2007 national speaking schedule & book signings there.
Through 2007, I'll be doing my best to make sure the family voice is heard on important issues impacting special needs families, including adding my take on the recent Ashley Treatment controversy. Feel free to write and tell me what issues you most want address in the media. I'll take your concerns with me. jappwinter@aol.com (no attachments, please!).
Through 2007, I'll be doing my best to make sure the family voice is heard on important issues impacting special needs families, including adding my take on the recent Ashley Treatment controversy. Feel free to write and tell me what issues you most want address in the media. I'll take your concerns with me. jappwinter@aol.com (no attachments, please!).
Listen to Judy’s 2007 National Talk Radio Interviews!
Please check back often— schedule subject to daily updates.
Fri. 1/19/07— KXEN-AM 1010- St. Louis, IL / (Interview Taped)
Interview Airs: 1/20@ 7 a.m. ET & 1/23 @ 8:45 p.m. ET
Jay Madas-Host/ Simulcast www.kxen1010am.com
Fri. 1/19/07— WMUZ-FM 103.5 / Detroit/ The Bob Dutko Show /1:30 p.m. ET/ Bob Dutko-Host/ www.wmuz.com
Thurs. 1/25/07-- WPTF-AM 680-Raleigh, NC/ North Carolina's Morning News with Jack Boston / 8:10 a.m. ET /Jack Boston-Host/ www.wptf.com
Fri. 1/26/07- WIBQ-AM 1220 / Sarasota, FL / 8:20 a.m. ET
Rochelle Herman-Host / simulcast at www.newstalk1220.com
Sat. 1/27/07 & Sun. 1/28/07- KCBC AM 770/ San Francisco/ 9 p.m. PT/Midnight ET/Community Focus with Pamela Reddington/ www.770kcbc.com
Tues. 1/30/07— WACK-AM 1420/ Rochester, NY/ 8:40 a.m. ET
Dr. Rus Jeffrey-Host/ www.1420wack.com
Wed. 1/31/07— Issues Today Radio Network/ Originating from Los Angeles/ Broadcast on 188 stations nationwide-check web for stations/ (Interview Taped-TBA) Bob Gourley-Host/ www.issuestodayradio.com
Sun. 2/4/07— WDTK-AM 1440- Detroit/ Disabilites Today/ 11 a.m. to noon ET/Roger McCarville-Host/ www.wdtkam.com
Mon. 2/5/07— WAWZ-FM Star 99.1 / New York City/ 10:30 a.m. ET (Taped-TBA)
Michael Leach-Host/ www.star991fm.com
Mon. 2/5/07- KPTK-AM 1090 /Seattle/ 1 p.m./ ET Taped-TBA/ Tami Kosch-Host/ www.am1090seattle.com
Wed. 2/7/07— WNTN-AM 1550/ Boston/ 11:00 a.m./ Paul Roberts-Host/ simulcast on www.wntn.com
Mon. 2/12/07- WBZ-News Radio 1030/ Boston/ The Jordan Rich Show/ 11:30 a.m. ET/ Taped-TBA/Jordan Rich-Host/ www.wbz.com
Wed. 2/14/07— WFHM-FM 95.5 & WHK-AM 1220/ Cleveland/ 11:30 a.m. ET (Taped-TBA)/ Family Matters/Caroline Kruse & Jacquie Chakirelis-Co-Hosts/ www.955thefish.com
Fri. 2/16/07-Conscious Talk Radio Network/ Washington State/ 10:33 a.m. ET/ 7:33 a.m. PT/ Rob Spears & Brenda Michaels-Hosts/ simulcast @www.conscioustalk.net
Mon. 2/21/07-Autism One Radio /Worldwide Broadcast/ 10 a.m. ET-(Interview Taped-TBA)/ Randy & Sandy Waters-Hosts/ www.autismone.org
Wed. 2/21/07— WOGL-FM 98.1 Philadelphia/ (Interview Taped-TBA)
Brad Segall-Host/ www.wogl.com
Weekend of Feb. 24/25-airing of interview taped Mon. 2/12/07- WBZ-Talk News Radio 1030/ Boston/ The Jordan Rich Show/Jordan Rich-Host/ www.wbz1030.com
Sun. 2/25/07-KPTK-AM 1090 /Seattle/ (taped on 2/5/07)/ 7 a.m. PT/ 10 a.m. ET/Community Matters with Tami Kosch-Host/ www.am1090seattle.com
Mon. 2/26/07-Dr. Pat Show/ National/ 11 a.m.- Noon ET/ 8 a.m.-9 a.m. PT/Dr. Pat Baccili-Host/ www.HealthyLife.net
Weekend of March 3rd & 4th, 2007-Issues Today Radio Network Interview (Taped in February) program originates from LA, airs at 188 stations nationwide/ Check www.issuestodayradio.com For listing of all national affiliates- then check that station for broadcast time
WILS AM 1320, Ebling & You/ 5:35 p.m. ET/ Host-Jack Ebling/ Lansing, MI
JudyWinter.com
Tuesday, January 16, 2007
Get Organized!
With 2007 just a couple of weeks old and many kids back in school, now is a great time to get a handle on all of that paperwork generated by your child's special needs. I know firsthand how easily, and how quickly, all those reports and other documents can take over your house - and your life.
It's time to get organized!
When you need to put your hands on important information quickly, and end up spending valuable time searching through mounds of paper and notebooks to find it, that adds to your stress load. Most families of children with special needs already have far too much stress in their lives, right?
That's why I'm a big fan of good organization!
Don't let the nasty paperwork trail take command of your life! This is something you can fix, and you can begin anytime the organizational spirit moves you. For most of us, the activity will prove relatively painless, and anyone can do it in the privacy of their own home.
Be aware that the earlier in your child's life that you begin this habit, the less 'catch up' work there will be waiting for you down the road. That will make your job easier. If your child is older and you have accumulated a much larger paper trail, try to break it down into more manageable chunks. Then, make a commitment to doing a little bit each week until you have it all organized.
Your actions will pay off in spades as you prepare more easily and more effectively for all those stressful and on-going meetings and appointments, including annual IEPT meetings. That helps fuel parent empowerment!
Here's my simple formula for getting a grip on your child's records:
-First, get yourself some colorful file folders, stickers, and three-ring binders. I vote for anything that looks less institutional! Also, purchase some black markers or make sure the ones you have are still going strong. If you prefer colorful markers, use 'em. Just make sure you can read them easily when searching through your files.
The purpose of getting organized is to reduce stress, not increase it.
-Next: Create whatever and however many files you need for categorizing your child's life needs, esp those that generate reports of any kind. Here's a sample of the kinds of files you may want to create: Medical (you may prefer separate files for physicians, specialists and hospitalizations)/Education/Individual Services (OT/PT/Speech)/Misc Programs & Activities/ Childcare-Respite/Personal (may include a favorite photo, birthday card, a child's artwork, etc).
-Once you have gathered the materials you need, find a good working space where you can keep everything out for a few days as a continued work in progress. If you have to remove everything to serve dinner each night, use a laundry basket.
-Gather all your supplies. Put on your favorite music, and don't be shy! Sing along loudly. It helps up the mood and energy for the task at hand.
-Sort through all your paperwork and place all reports/paperwork into the appropriate piles and label those piles so you can easily add to them.
-Organize the paperwork and throw out anything you don't need, including duplicates (shred any paperwork that has sensitive information). Reducing the load will help you keep your files more manageable. Don't throw away any important official documents (i.e. IEP, therapy reports, etc), or those with special sentimental value.
-I suggest placing one copy of official reports into appropriately labeled three-ring binders so you can find them when needing additional copies for meetings.
-Label the folders and/or binders.
-Place important papers into folder so that you can easily access them as needed. Keeping track of medical records will help you hand over a copy of your child's history quickly during visits to specialists and for hospitalizations without relying on your memory, something especially tough to do during stressful visits or emergencies.
If age/ability allow, invite your child to help you decorate the files with stickers, etc. to make them even more user friendly. Help your children feel part of the decision-making process about their own life (think self determination!).
-When finished, place the files/binders alpabetically in a file cabinet or other storage place where you can easily put your hands on them. If you need to purchase storage boxes for this purpose, make sure you do that before starting the process.
-Update the files regularly so you don't fall too far behind on your paperwork (reduce stress!). Schedule a time each week to address filing neeeds.
-Also,provide a corresponding file on your computer where you can add the most critical dates and details so you can also easily print out a copy without going through all the records in your child's files.
Getting organized can help you to become a more empowererd parent by allowing you to easily access the information needed to address your child's medical, educational and other needs more accurately, and more productively.
Finally, don't forget to have fun! We can all use a bit more of that in our lives!
Let me know about all the creative ways in which you make this project even more productive and fun! email: jappwinter@aol.com.
Now go to it!
JudyWinter.com
Author: Breakthrough Parenting for Children with Special Needs: Raising the Bar of Expectations
It's time to get organized!
When you need to put your hands on important information quickly, and end up spending valuable time searching through mounds of paper and notebooks to find it, that adds to your stress load. Most families of children with special needs already have far too much stress in their lives, right?
That's why I'm a big fan of good organization!
Don't let the nasty paperwork trail take command of your life! This is something you can fix, and you can begin anytime the organizational spirit moves you. For most of us, the activity will prove relatively painless, and anyone can do it in the privacy of their own home.
Be aware that the earlier in your child's life that you begin this habit, the less 'catch up' work there will be waiting for you down the road. That will make your job easier. If your child is older and you have accumulated a much larger paper trail, try to break it down into more manageable chunks. Then, make a commitment to doing a little bit each week until you have it all organized.
Your actions will pay off in spades as you prepare more easily and more effectively for all those stressful and on-going meetings and appointments, including annual IEPT meetings. That helps fuel parent empowerment!
Here's my simple formula for getting a grip on your child's records:
-First, get yourself some colorful file folders, stickers, and three-ring binders. I vote for anything that looks less institutional! Also, purchase some black markers or make sure the ones you have are still going strong. If you prefer colorful markers, use 'em. Just make sure you can read them easily when searching through your files.
The purpose of getting organized is to reduce stress, not increase it.
-Next: Create whatever and however many files you need for categorizing your child's life needs, esp those that generate reports of any kind. Here's a sample of the kinds of files you may want to create: Medical (you may prefer separate files for physicians, specialists and hospitalizations)/Education/Individual Services (OT/PT/Speech)/Misc Programs & Activities/ Childcare-Respite/Personal (may include a favorite photo, birthday card, a child's artwork, etc).
-Once you have gathered the materials you need, find a good working space where you can keep everything out for a few days as a continued work in progress. If you have to remove everything to serve dinner each night, use a laundry basket.
-Gather all your supplies. Put on your favorite music, and don't be shy! Sing along loudly. It helps up the mood and energy for the task at hand.
-Sort through all your paperwork and place all reports/paperwork into the appropriate piles and label those piles so you can easily add to them.
-Organize the paperwork and throw out anything you don't need, including duplicates (shred any paperwork that has sensitive information). Reducing the load will help you keep your files more manageable. Don't throw away any important official documents (i.e. IEP, therapy reports, etc), or those with special sentimental value.
-I suggest placing one copy of official reports into appropriately labeled three-ring binders so you can find them when needing additional copies for meetings.
-Label the folders and/or binders.
-Place important papers into folder so that you can easily access them as needed. Keeping track of medical records will help you hand over a copy of your child's history quickly during visits to specialists and for hospitalizations without relying on your memory, something especially tough to do during stressful visits or emergencies.
If age/ability allow, invite your child to help you decorate the files with stickers, etc. to make them even more user friendly. Help your children feel part of the decision-making process about their own life (think self determination!).
-When finished, place the files/binders alpabetically in a file cabinet or other storage place where you can easily put your hands on them. If you need to purchase storage boxes for this purpose, make sure you do that before starting the process.
-Update the files regularly so you don't fall too far behind on your paperwork (reduce stress!). Schedule a time each week to address filing neeeds.
-Also,provide a corresponding file on your computer where you can add the most critical dates and details so you can also easily print out a copy without going through all the records in your child's files.
Getting organized can help you to become a more empowererd parent by allowing you to easily access the information needed to address your child's medical, educational and other needs more accurately, and more productively.
Finally, don't forget to have fun! We can all use a bit more of that in our lives!
Let me know about all the creative ways in which you make this project even more productive and fun! email: jappwinter@aol.com.
Now go to it!
JudyWinter.com
Author: Breakthrough Parenting for Children with Special Needs: Raising the Bar of Expectations
Monday, January 15, 2007
I Have a Dream, Too, Dr. King
Today, the nation pays tribute to the legacy of Dr. Martin Luther King, and rightly so.
Still,I can’t help but ask why so many discussions involving discrimination and equal rights focus mainly on race. Skin color represents one form of injustice against which we must be vigilant. But the definition of discrimination is much broader. Discrimination involves more than only race, something those with special needs understand far too well. That's why I believe we should all take time to understand and reflect on the meaning and power of today's celebration.
Robert F. Kennedy once said, "When the rights of one are denied, the rights of all are endangered." Like Kennedy, Dr. King knew this reality well and spoke eloquently about it. As someone who parented a child with cerebral palsy for nearly thirteen years, I understand the power of that statement well, too.
It wasn’t race that first inspired me to embrace the doctrine of equal rights, although I support the continued struggle for racial equality. It was my challenging role as the parent of a child with a disability.
I am an upper-middle class, white female with a successful career as an author, journalist and speaker on special needs issues. I have been married to the same man for thirty years. I have two children and live in an upper-middle class suburb, complete with a white picket fence. I have never gone to bed hungry, experienced homelessness or been the victim of racial profiling.
But I’ve felt the sting of discrimination intended to deny someone basic human rights. My brushes with intolerance stemmed from the limiting words and actions directed toward my son, who had cerebral palsy and used a wheelchair. Eric passed away in February 2003 at the tender age of twelve, but each act of intolerance directed toward him is forever deeply etched in my mind.
From all the outward appearances, no one would believe that I would be the subject of discrimination. Our definition is too narrow, something that allows many people to easily turn the other cheek to this discussion.
Fifty-four million Americans have disabilities; 170 million people worldwide have intellectual disabilities. People with special needs represent the largest minority group in this country, but their struggles are rarely included in discussions of discrimination and equality. Yet, the societal struggles faced by people of race closely mirrored those of my son, making the fight for equal rights increasingly relevant to my own life, too.
Eric could not walk or throw a baseball, tie his shoes or speak full sentences. Were it not for my passionate commitment to him, he might have been denied access to his neighborhood school or missed outings because of accessibility issues he could neither address nor resolve. My demanding advocacy role has granted me renewed appreciation for the Civil Rights Movement for the work of Dr. King, and for the struggles and accomplishments of those with disabilities, achievements that too often go unrecognized.
I have renewed respect for the passionate commitment of those involved in the Women’s Suffrage Movement, and the tireless work of visionaries like Jesus, Gandhi, and Mother Theresa. Because of Eric’s needs, I’ve learned that discrimination isn’t always about skin color. Often it represents a blatant disregard and intolerance for human differences, be it race, ability, age, appearances, sexual orientation or cultural beliefs. We can and must do better by all people.
With a solid focus on my child’s intrinsic value, I worked hard to counter stereotypes about him and others with disabilities, but it wasn’t easy. It still isn't. With his bright mind, eager spirit and remarkable patience, my son taught me volumes about forgiveness and the value of diversity, and the importance of speaking up for individual justice.
My advocacy hasn’t been free of heartache.
In an increasingly diverse society, we are all beneficiaries of the work of those who fight discrimination in any form. Only circumstances separate us. As Dr. King eloquently stated in his now famous speech, “What impacts one, impacts all.” Our discussions about discrimination and equal rights should include a broader understanding of its impact on all of society, including those with special needs.
Dr. Martin Luther King's message was one of equality, peace and justice. He had a dream that all people who suffer at the hands of discrimination of any form would be truly free. I share that dream, Mr. King. That is why I recognize Martin Luther King Day, and that's why I believe that all those who care about individuals with special needs should, too.
My dream for a better life for my son, and millions of other children with disabilites, lives on. I know that Dr. King would support my dream, too.
Still,I can’t help but ask why so many discussions involving discrimination and equal rights focus mainly on race. Skin color represents one form of injustice against which we must be vigilant. But the definition of discrimination is much broader. Discrimination involves more than only race, something those with special needs understand far too well. That's why I believe we should all take time to understand and reflect on the meaning and power of today's celebration.
Robert F. Kennedy once said, "When the rights of one are denied, the rights of all are endangered." Like Kennedy, Dr. King knew this reality well and spoke eloquently about it. As someone who parented a child with cerebral palsy for nearly thirteen years, I understand the power of that statement well, too.
It wasn’t race that first inspired me to embrace the doctrine of equal rights, although I support the continued struggle for racial equality. It was my challenging role as the parent of a child with a disability.
I am an upper-middle class, white female with a successful career as an author, journalist and speaker on special needs issues. I have been married to the same man for thirty years. I have two children and live in an upper-middle class suburb, complete with a white picket fence. I have never gone to bed hungry, experienced homelessness or been the victim of racial profiling.
But I’ve felt the sting of discrimination intended to deny someone basic human rights. My brushes with intolerance stemmed from the limiting words and actions directed toward my son, who had cerebral palsy and used a wheelchair. Eric passed away in February 2003 at the tender age of twelve, but each act of intolerance directed toward him is forever deeply etched in my mind.
From all the outward appearances, no one would believe that I would be the subject of discrimination. Our definition is too narrow, something that allows many people to easily turn the other cheek to this discussion.
Fifty-four million Americans have disabilities; 170 million people worldwide have intellectual disabilities. People with special needs represent the largest minority group in this country, but their struggles are rarely included in discussions of discrimination and equality. Yet, the societal struggles faced by people of race closely mirrored those of my son, making the fight for equal rights increasingly relevant to my own life, too.
Eric could not walk or throw a baseball, tie his shoes or speak full sentences. Were it not for my passionate commitment to him, he might have been denied access to his neighborhood school or missed outings because of accessibility issues he could neither address nor resolve. My demanding advocacy role has granted me renewed appreciation for the Civil Rights Movement for the work of Dr. King, and for the struggles and accomplishments of those with disabilities, achievements that too often go unrecognized.
I have renewed respect for the passionate commitment of those involved in the Women’s Suffrage Movement, and the tireless work of visionaries like Jesus, Gandhi, and Mother Theresa. Because of Eric’s needs, I’ve learned that discrimination isn’t always about skin color. Often it represents a blatant disregard and intolerance for human differences, be it race, ability, age, appearances, sexual orientation or cultural beliefs. We can and must do better by all people.
With a solid focus on my child’s intrinsic value, I worked hard to counter stereotypes about him and others with disabilities, but it wasn’t easy. It still isn't. With his bright mind, eager spirit and remarkable patience, my son taught me volumes about forgiveness and the value of diversity, and the importance of speaking up for individual justice.
My advocacy hasn’t been free of heartache.
In an increasingly diverse society, we are all beneficiaries of the work of those who fight discrimination in any form. Only circumstances separate us. As Dr. King eloquently stated in his now famous speech, “What impacts one, impacts all.” Our discussions about discrimination and equal rights should include a broader understanding of its impact on all of society, including those with special needs.
Dr. Martin Luther King's message was one of equality, peace and justice. He had a dream that all people who suffer at the hands of discrimination of any form would be truly free. I share that dream, Mr. King. That is why I recognize Martin Luther King Day, and that's why I believe that all those who care about individuals with special needs should, too.
My dream for a better life for my son, and millions of other children with disabilites, lives on. I know that Dr. King would support my dream, too.
Thursday, January 11, 2007
The Cemetery Gang Offers Support in Loss
When I was a child, cemeteries scared me to death.
I associated them with every terrifying image that I had ever seen in those scary Hollywood horror flicks of my childhood-- especially the one about the disembodied green hand that terrorized unsuspecting young lovers at those once hip drive-in movies. Years later, Michael Jackson's graphic Thriller video did little to help dispel these disturbing images when it aired repeatedly on MTV. I found myself going out of my way to avoid driving by cemeteries, especially late at night, when it was storming, or on Halloween when the spirits were said to be especially restless and feisty.
I didn’t understand that cemeteries could be places of great beauty and healing until my 12-year-old son, Eric, died suddenly in February 2003. Now, I’m part of the Cemetery Gang, a term my husband and I have coined for grieving adults of all ages who visit the cemetery searching for answers to life’s tough questions. Many of us have buried children.
We come to the cemetery looking for healing and relief from grief. Some days we find it.
Marcella is our gang leader and a friend to all. Her husband died seven years ago and she still mourns deeply. The petite, silver-tressed senior citizen serves as the living cemetery angel. She tells newcomers the best clippers to buy to trim around family gravesites, and where to buy candles that burn for hours, providing light for our loved ones on the darkest night. Eric was afraid of the dark, so that information has comforted us. She gently and confidently introduces the shell shocked to this new place of refuge.
Marcella shares cemetery expertise to help mend her own broken heart. She waters wilting flowers on children’s graves on the hottest days or when families try to out run tough emotions if only briefly by escaping out of town. When the grass surrounding our loved one's gravesites isn't groomed to family standards, it's Marcella who takes a gutsy stance and advocates for needed change.
When her husband died, cemetery rituals gave Marcella a reason to go on living.
The cemetery gang is only one blessing found here. The cemetery is an important social gathering spot where true community is still found. That’s a priceless gift when death blindsides you in the middle of the night and steals away your only son. The cemetery has become my refuge, my friend and confidant, a place where strangers share intimate details of a loved one’s death.
When the cemetery gang asks you how you’re doing, they listen to your answer.
Here, I have watched innocent children gently lay flowers on the fresh dirt of gravesites and realized that we’re not born fearing cemeteries. Still, cemeteries can be brutally honest. My son is buried near a college student who was murdered, a popular cheerleader who died of leukemia, an eight-year-old boy taken by sudden illness, and an infant girl who lived long enough to receive her name.
It’s common to see graduation hats, birthday balloons, enchanting angels, well-loved teddy bears, even Christmas trees at our children’s gravesites. These stark reminders that death doesn’t discriminate, impact how survivors walk. Our gaits are less steady, our immortality less certain. We grant strangers unconditional support. Instant friendships and loyalty are formed. There is little room here for meaningless, idle chit chat.
We protect each other's cemetery turf, and one another.
The cemetery now serves as my life raft in grief’s unpredictable raging storms. After being with my son, the rough waters of daily living seem somehow easier to navigate. I have rushed to the cemetery eager to share exciting news with Eric. Then the reality of his death slaps me hard again, and I wistfully add, ‘but you already knew that didn’t you?' I am convinced that my son now serves as my omnipotent, ever-present protector.’ In the rawest cemetery moments, I’m certain that Eric can see and hear me.
I associated them with every terrifying image that I had ever seen in those scary Hollywood horror flicks of my childhood-- especially the one about the disembodied green hand that terrorized unsuspecting young lovers at those once hip drive-in movies. Years later, Michael Jackson's graphic Thriller video did little to help dispel these disturbing images when it aired repeatedly on MTV. I found myself going out of my way to avoid driving by cemeteries, especially late at night, when it was storming, or on Halloween when the spirits were said to be especially restless and feisty.
I didn’t understand that cemeteries could be places of great beauty and healing until my 12-year-old son, Eric, died suddenly in February 2003. Now, I’m part of the Cemetery Gang, a term my husband and I have coined for grieving adults of all ages who visit the cemetery searching for answers to life’s tough questions. Many of us have buried children.
We come to the cemetery looking for healing and relief from grief. Some days we find it.
Marcella is our gang leader and a friend to all. Her husband died seven years ago and she still mourns deeply. The petite, silver-tressed senior citizen serves as the living cemetery angel. She tells newcomers the best clippers to buy to trim around family gravesites, and where to buy candles that burn for hours, providing light for our loved ones on the darkest night. Eric was afraid of the dark, so that information has comforted us. She gently and confidently introduces the shell shocked to this new place of refuge.
Marcella shares cemetery expertise to help mend her own broken heart. She waters wilting flowers on children’s graves on the hottest days or when families try to out run tough emotions if only briefly by escaping out of town. When the grass surrounding our loved one's gravesites isn't groomed to family standards, it's Marcella who takes a gutsy stance and advocates for needed change.
When her husband died, cemetery rituals gave Marcella a reason to go on living.
The cemetery gang is only one blessing found here. The cemetery is an important social gathering spot where true community is still found. That’s a priceless gift when death blindsides you in the middle of the night and steals away your only son. The cemetery has become my refuge, my friend and confidant, a place where strangers share intimate details of a loved one’s death.
When the cemetery gang asks you how you’re doing, they listen to your answer.
Here, I have watched innocent children gently lay flowers on the fresh dirt of gravesites and realized that we’re not born fearing cemeteries. Still, cemeteries can be brutally honest. My son is buried near a college student who was murdered, a popular cheerleader who died of leukemia, an eight-year-old boy taken by sudden illness, and an infant girl who lived long enough to receive her name.
It’s common to see graduation hats, birthday balloons, enchanting angels, well-loved teddy bears, even Christmas trees at our children’s gravesites. These stark reminders that death doesn’t discriminate, impact how survivors walk. Our gaits are less steady, our immortality less certain. We grant strangers unconditional support. Instant friendships and loyalty are formed. There is little room here for meaningless, idle chit chat.
We protect each other's cemetery turf, and one another.
The cemetery now serves as my life raft in grief’s unpredictable raging storms. After being with my son, the rough waters of daily living seem somehow easier to navigate. I have rushed to the cemetery eager to share exciting news with Eric. Then the reality of his death slaps me hard again, and I wistfully add, ‘but you already knew that didn’t you?' I am convinced that my son now serves as my omnipotent, ever-present protector.’ In the rawest cemetery moments, I’m certain that Eric can see and hear me.
Some days, I share my lunch.
I have reconnected with Eric graveside after rushing frantically to every room in my house, desperate for his scent, desperate to hold him. At my neighborhood cemetery, Eric is not lost, and neither am I.
There is comfort in cemetery rituals that defies explanation to those who have so far been saved from from this rocky path. No one escapes forever.
The cemetery offers me peace and resolution, solitude and friendship. The people here never tire of seemingly endless stories of loss, nor do they urge you to get over it and resume normal life, whatever that means. In the sacred stillness of this place, I can hear children playing on the nearby school playground where my son once played, and church bells ringing as the setting sun hides its face in a dense forest of trees. Here, I have argued tough faith issues with God, while cemetery birds sang bedtime lullabies to my son.
I have learned that cemeteries are resting places for the living. When the cards, phone calls and lasagna stop coming and people go back to business as usual, the grieving come here to remember. At the cemetery, I talk to my son and tell him how much I love him and always will. I grant myself permission to release powerful tears that have threatened to overwhelm me. I remember that Eric’s life and death both hold great meaning and promise to honor his remarkable legacy, whatever the cost.
The cemetery has made me increasingly bold. Life seems simpler, the choices clearer when you are standing on the tender grass or pristine snow of a loved one’s grave. Whatever time each of us has left is far too fragile to spend living with regret or anger. You learn to put one foot in front of the other and move forward, moment by moment, day by day, until the pain begins to ease and gentler breathing returns.
Somehow I have survived every parent’s nightmare. My son died suddenly from medical complications fueled by cerebral palsy. He died peacefully, but my grief is not less intense. My husband and I raised Eric as a child of value. He dreamed of studying music in college one day, a dream we planned to support fully. Hundreds attended Eric’s funeral, touched deeply by a life rich with promise and talent, one cut far too short. I remember all their words of love and support and admiration for my son- and remember how lucky I was, and am, to be Eric's mom.
Visiting Eric at the cemetery has helped me resume my passionate work as an author, journalist and speaker on disability parenting issues, important work he and I began. It’s work I now continue alone, fueled by Eric’s teachings and regular cemetery visits.
As I survey gravesites well tended and those rarely visited, I think Hollywood may have done a great disservice to many grieving souls by promoting cemeteries as places of fear and horror. Today, I know that cemeteries are instead peaceful places of healing and great beauty, and the Cemetery Gang understands far better than most that I didn’t bury a 'disabled' child whose value was too often questioned by society. I buried my beloved son.
In the neighborhood cemetery, everybody’s equal.
JudyWinter.com
Author:
Breakthrough Parenting for Children with Special Needs: Raising the Bar of Expectations
I have reconnected with Eric graveside after rushing frantically to every room in my house, desperate for his scent, desperate to hold him. At my neighborhood cemetery, Eric is not lost, and neither am I.
There is comfort in cemetery rituals that defies explanation to those who have so far been saved from from this rocky path. No one escapes forever.
The cemetery offers me peace and resolution, solitude and friendship. The people here never tire of seemingly endless stories of loss, nor do they urge you to get over it and resume normal life, whatever that means. In the sacred stillness of this place, I can hear children playing on the nearby school playground where my son once played, and church bells ringing as the setting sun hides its face in a dense forest of trees. Here, I have argued tough faith issues with God, while cemetery birds sang bedtime lullabies to my son.
I have learned that cemeteries are resting places for the living. When the cards, phone calls and lasagna stop coming and people go back to business as usual, the grieving come here to remember. At the cemetery, I talk to my son and tell him how much I love him and always will. I grant myself permission to release powerful tears that have threatened to overwhelm me. I remember that Eric’s life and death both hold great meaning and promise to honor his remarkable legacy, whatever the cost.
The cemetery has made me increasingly bold. Life seems simpler, the choices clearer when you are standing on the tender grass or pristine snow of a loved one’s grave. Whatever time each of us has left is far too fragile to spend living with regret or anger. You learn to put one foot in front of the other and move forward, moment by moment, day by day, until the pain begins to ease and gentler breathing returns.
Somehow I have survived every parent’s nightmare. My son died suddenly from medical complications fueled by cerebral palsy. He died peacefully, but my grief is not less intense. My husband and I raised Eric as a child of value. He dreamed of studying music in college one day, a dream we planned to support fully. Hundreds attended Eric’s funeral, touched deeply by a life rich with promise and talent, one cut far too short. I remember all their words of love and support and admiration for my son- and remember how lucky I was, and am, to be Eric's mom.
Visiting Eric at the cemetery has helped me resume my passionate work as an author, journalist and speaker on disability parenting issues, important work he and I began. It’s work I now continue alone, fueled by Eric’s teachings and regular cemetery visits.
As I survey gravesites well tended and those rarely visited, I think Hollywood may have done a great disservice to many grieving souls by promoting cemeteries as places of fear and horror. Today, I know that cemeteries are instead peaceful places of healing and great beauty, and the Cemetery Gang understands far better than most that I didn’t bury a 'disabled' child whose value was too often questioned by society. I buried my beloved son.
In the neighborhood cemetery, everybody’s equal.
JudyWinter.com
Author:
Breakthrough Parenting for Children with Special Needs: Raising the Bar of Expectations
Sunday, January 07, 2007
Ashley is Much More than a "Pillow Angel"
Every so often, a story breaks in the press that commands both the world's attention, and its prompt response. Such is the case with the story that broke this week about Ashley, the nine-year-old girl with special needs whose parents chose to have surgery to stunt her growth. Like many tough-life stories about children and parenting, this one tugs at our heart strings, while seemingly dividing us into solid camps of for or against the actions of Ashley's parents.
But there is much gray area that remains to discuss.
While this story has been played out in the press as an ethics issue, it's so much more. Ashley's story represents a human-rights struggle of grave importance, one with the potential to generate invaluable discussions about the never-ending demands of special needs parenting. Regardless of where you stand on the issue of right and wrong, the issue of disability raised by this one story (and there are many that go untold) deserves more thorough discussion.
My hope is that the media, as well as all those so quick to judge the actions of Ashley's parents, will instead take a deep breath, then add their thoughtful, passionate voices to increasingly balanced discussions that will help us create real change for this population, and their families.
If there is one point that this story has driven home, it is that for all of our apparent gains, when it comes to special needs, we are still in the dark ages.
There is no clear-cut, simplistic response to this story, and those trying to make it into one only add more fuel to the story's confusion and public outrage. That will do little to serve the best interests of Ashley, or that of others facing similar struggles. This is ultimately a story about a young girl's life, and the right to be part of what happens to her.
Briefly, here are some of the most pressing issues that I believe this story demands we discuss more fully.
First, while ethics is an important part of this complex discussion, it should not be the defining one (nor the primary topic/guest on talk shows). We need to include the voices of those who live with the day-to-day demands that this story brings to light. We should also include individuals who are living with a disability so we can make more educated decisions. This topic deserves that kind of coverage.
The reach of special needs is huge; 54 million Americans, and more than 600 million people worldwide, have disabilities. Special needs reaches across all socio-economic and cultural borders. We must stop ignoring this timely discussion and instead, do a better job of addressing and resolving the complex issues it creates. We need to reduce the number of images involving self-pity and self-deprecation.
We need to include the achievements of those with special needs in our history books and classroom discussions.
Also, we cannot continue to ignore the lack of adequate resources, services and respite care provided to the families who care for their children at home. Many families are breaking under the weight of their demands. We cannot continue to pretend that their struggles don't impact us. Special needs can happen to anyone at anytime, thrusting once typical families into unchartered territory for which they, and society, are ill prepared to handle. That's a sobering thought.
There is no clear-cut, definitive road map for the challenging journey of special needs parenting. It often does take a village...and the village, and our nation, need to step up.
I parented a child with cerebral palsy for nearly thirteen years. Eric had limited speech and motor skills and was fed through a g-tube, just like Ashley. I know about the issues raised by impending puberty and the demands faced by lifting your child every day. My back still bears the results of that tough responsibility, four years after my son's death.
Still, my husband and I agree that we could never had made a decision to intervene in our child's development in a way as dramatic as that chosen by Ashley's parents. We were always too busy focusing on maximizing our child's potential, not on changing the essence of who he was as a human being. Our choices, while rarely easy, focused on what would best serve our son's wishes, even as we fantasized about tropical vacations far away...
While there were no firm promises early on about what Eric's future development and life would become, other than dismal, we never allowed disability to define our child's value. It took years for the results of some of our commitment to be fully recognized, but ultimately we were rewarded for our steadfast parenting focus.
It took lots of time, patience and hard work. The work was at times exhausting, but when our son achieved even the smallest, most unexpected success, the rewards were exhilirating.
Like many children fed through a g-tube and lacking in mobility, we knew that our son would probably never have reached the height and weight of other typically developing children, making the weight issue a bit of a mute point for us. Perhaps that would have been the case for Ashley, too.
The fact is that the future of many children with special needs may still be up for grabs, and the outcomes may be determined by the choices that we as parents and professionals make every day to help them thrive and grow and lead increasingly productive, fulfilling and independent lives. Our decisions can last a lifetime.
Should we have the right to make decisions that cut a child's full potential short so early in their lives, or at all?
Today, many kids with special needs are still written off far too early in their development. On the flip side, I've met many others given every opportunity to thrive. The difference can be remarkable. All the successful individuals with special needs that I have interviewed during the past fifteen years credited a parent's love and positive choices for their 'unexpected' life success-- and for believing in them when all around them saw only a 'disabled" child.
Brighter futures begin with greater awareness of a person's intrinsic value, lots of love, valuable resources and services, pit-bull parental advocacy, and a mindset focused on what's possible for that child, regardless of a disability. Not every child will achieve the dream of full independence or reach those all-important, age-appropriate milestones, but don't they deserve the chance to try, especially while they are still so young?
We need to provide families and society with greater examples of those with special needs who are productive, independent, contributing citizens. We need to redefine family, and provide these families with the critical support they need to handle their challenging roles well. The lack of positive parenting examples for families helps create a sense of hopelessness that too often results in limited, self-fulfilling prophecies for their children.
I don't always agree with the decisions made by parents, including this one, but I do respect their right to seek out decisions they believe are in the best interests of their children. What disturbs me greatly here is the complexity of a decision that raises serious issues about the value and rights of those with special needs. It reminds me of the experiments that were conducted in secret on children with cerebral palsy in institutions years ago.
They, too, had no voice. We cannot allow the ignorance of the past to define the futures of our children. We have traveled too far.
I can't help but ask if the physicans in this case gave the family an opportunity to talk with parents of children with similar challenges who were handling their child's needs without such drastic intervention? I am concerned by some of the arguments attributed to the professionals involved stating that the parents' actions did not hurt their child. Today, too many professionals still foster stereotypes about children with special needs, while armed with dismal statistics and powerful, stinging words that may take away the kind of hope families need to help them create better futures for their children.
There is still a critical need for the press and public to stop using language that fosters the view of this population as less valued. That includes the use of outdated terminology that reinforces stereotypes. Words like severely disabled, handicapped, crippled, 'suffering from', brain dead and 'confined to a wheelchair' do nothing to raise the image of the value of those with disabilities. The fact is that we can still tell the stories accurately and fairly by using more up-to-date terminology.
One of my biggest arguments with the coverage of this story thus far, is that Ashley's name is often not even mentioned until far into the print or broadcast coverage. We need to focus on the fact that this girl is a human being first and foremost, not just a nameless child with a disability that we can easily disregard. That means using people-first language, always.
While there are many things about this story that concern me, I believe that we have been given an important, long-overdue opportunity as a society to address this population with the respect it deserves.
Ashley deserves at least that much from us, as do all the other children counting on us to best serve their interests and needs, not only our own. After reading their blog, I do believe that Ashley's parents made their decisions out of deep love for their child. But I can't help but wonder if those choices might have been made differently with access to more positive resources, additional dynamic parenting examples, further discussion about Ashley's future potential, and with the benefit of time. We will never know.
We cannot undo what has been done to Ashley, but we can and must remember one important fact: Ashley is much more than just a pillow angel. She is a living, breathing human being.
As a society, how long will we continue to ignore or gloss over that fact?
JudyWinter.com
Author:
Breakthrough Parenting for Children with Special Needs: Raising the Bar of Expectations
To learn more about Ashley, this story, and what is now called "The Ashley Treatment" visit the parents' blog: http://ashleytreatment.spaces.live.com/
But there is much gray area that remains to discuss.
While this story has been played out in the press as an ethics issue, it's so much more. Ashley's story represents a human-rights struggle of grave importance, one with the potential to generate invaluable discussions about the never-ending demands of special needs parenting. Regardless of where you stand on the issue of right and wrong, the issue of disability raised by this one story (and there are many that go untold) deserves more thorough discussion.
My hope is that the media, as well as all those so quick to judge the actions of Ashley's parents, will instead take a deep breath, then add their thoughtful, passionate voices to increasingly balanced discussions that will help us create real change for this population, and their families.
If there is one point that this story has driven home, it is that for all of our apparent gains, when it comes to special needs, we are still in the dark ages.
There is no clear-cut, simplistic response to this story, and those trying to make it into one only add more fuel to the story's confusion and public outrage. That will do little to serve the best interests of Ashley, or that of others facing similar struggles. This is ultimately a story about a young girl's life, and the right to be part of what happens to her.
Briefly, here are some of the most pressing issues that I believe this story demands we discuss more fully.
First, while ethics is an important part of this complex discussion, it should not be the defining one (nor the primary topic/guest on talk shows). We need to include the voices of those who live with the day-to-day demands that this story brings to light. We should also include individuals who are living with a disability so we can make more educated decisions. This topic deserves that kind of coverage.
The reach of special needs is huge; 54 million Americans, and more than 600 million people worldwide, have disabilities. Special needs reaches across all socio-economic and cultural borders. We must stop ignoring this timely discussion and instead, do a better job of addressing and resolving the complex issues it creates. We need to reduce the number of images involving self-pity and self-deprecation.
We need to include the achievements of those with special needs in our history books and classroom discussions.
Also, we cannot continue to ignore the lack of adequate resources, services and respite care provided to the families who care for their children at home. Many families are breaking under the weight of their demands. We cannot continue to pretend that their struggles don't impact us. Special needs can happen to anyone at anytime, thrusting once typical families into unchartered territory for which they, and society, are ill prepared to handle. That's a sobering thought.
There is no clear-cut, definitive road map for the challenging journey of special needs parenting. It often does take a village...and the village, and our nation, need to step up.
I parented a child with cerebral palsy for nearly thirteen years. Eric had limited speech and motor skills and was fed through a g-tube, just like Ashley. I know about the issues raised by impending puberty and the demands faced by lifting your child every day. My back still bears the results of that tough responsibility, four years after my son's death.
Still, my husband and I agree that we could never had made a decision to intervene in our child's development in a way as dramatic as that chosen by Ashley's parents. We were always too busy focusing on maximizing our child's potential, not on changing the essence of who he was as a human being. Our choices, while rarely easy, focused on what would best serve our son's wishes, even as we fantasized about tropical vacations far away...
While there were no firm promises early on about what Eric's future development and life would become, other than dismal, we never allowed disability to define our child's value. It took years for the results of some of our commitment to be fully recognized, but ultimately we were rewarded for our steadfast parenting focus.
It took lots of time, patience and hard work. The work was at times exhausting, but when our son achieved even the smallest, most unexpected success, the rewards were exhilirating.
Like many children fed through a g-tube and lacking in mobility, we knew that our son would probably never have reached the height and weight of other typically developing children, making the weight issue a bit of a mute point for us. Perhaps that would have been the case for Ashley, too.
The fact is that the future of many children with special needs may still be up for grabs, and the outcomes may be determined by the choices that we as parents and professionals make every day to help them thrive and grow and lead increasingly productive, fulfilling and independent lives. Our decisions can last a lifetime.
Should we have the right to make decisions that cut a child's full potential short so early in their lives, or at all?
Today, many kids with special needs are still written off far too early in their development. On the flip side, I've met many others given every opportunity to thrive. The difference can be remarkable. All the successful individuals with special needs that I have interviewed during the past fifteen years credited a parent's love and positive choices for their 'unexpected' life success-- and for believing in them when all around them saw only a 'disabled" child.
Brighter futures begin with greater awareness of a person's intrinsic value, lots of love, valuable resources and services, pit-bull parental advocacy, and a mindset focused on what's possible for that child, regardless of a disability. Not every child will achieve the dream of full independence or reach those all-important, age-appropriate milestones, but don't they deserve the chance to try, especially while they are still so young?
We need to provide families and society with greater examples of those with special needs who are productive, independent, contributing citizens. We need to redefine family, and provide these families with the critical support they need to handle their challenging roles well. The lack of positive parenting examples for families helps create a sense of hopelessness that too often results in limited, self-fulfilling prophecies for their children.
I don't always agree with the decisions made by parents, including this one, but I do respect their right to seek out decisions they believe are in the best interests of their children. What disturbs me greatly here is the complexity of a decision that raises serious issues about the value and rights of those with special needs. It reminds me of the experiments that were conducted in secret on children with cerebral palsy in institutions years ago.
They, too, had no voice. We cannot allow the ignorance of the past to define the futures of our children. We have traveled too far.
I can't help but ask if the physicans in this case gave the family an opportunity to talk with parents of children with similar challenges who were handling their child's needs without such drastic intervention? I am concerned by some of the arguments attributed to the professionals involved stating that the parents' actions did not hurt their child. Today, too many professionals still foster stereotypes about children with special needs, while armed with dismal statistics and powerful, stinging words that may take away the kind of hope families need to help them create better futures for their children.
There is still a critical need for the press and public to stop using language that fosters the view of this population as less valued. That includes the use of outdated terminology that reinforces stereotypes. Words like severely disabled, handicapped, crippled, 'suffering from', brain dead and 'confined to a wheelchair' do nothing to raise the image of the value of those with disabilities. The fact is that we can still tell the stories accurately and fairly by using more up-to-date terminology.
One of my biggest arguments with the coverage of this story thus far, is that Ashley's name is often not even mentioned until far into the print or broadcast coverage. We need to focus on the fact that this girl is a human being first and foremost, not just a nameless child with a disability that we can easily disregard. That means using people-first language, always.
While there are many things about this story that concern me, I believe that we have been given an important, long-overdue opportunity as a society to address this population with the respect it deserves.
Ashley deserves at least that much from us, as do all the other children counting on us to best serve their interests and needs, not only our own. After reading their blog, I do believe that Ashley's parents made their decisions out of deep love for their child. But I can't help but wonder if those choices might have been made differently with access to more positive resources, additional dynamic parenting examples, further discussion about Ashley's future potential, and with the benefit of time. We will never know.
We cannot undo what has been done to Ashley, but we can and must remember one important fact: Ashley is much more than just a pillow angel. She is a living, breathing human being.
As a society, how long will we continue to ignore or gloss over that fact?
JudyWinter.com
Author:
Breakthrough Parenting for Children with Special Needs: Raising the Bar of Expectations
To learn more about Ashley, this story, and what is now called "The Ashley Treatment" visit the parents' blog: http://ashleytreatment.spaces.live.com/
Sunday, December 31, 2006
Laughing at Those Pesky Little New Year's Resolutions
Those of you familiar with my work as a writer have probably already figured out that I'm big on adding a humorous take to even the most infuriating and exhausting life challenges. My experience says that savoring regular loud guffaws, complete with a couple of loud, ugly snorts, can be a pretty useful survival tool, one that allows us to claim renewed perspective for even the toughest life events.
I believe that a hearty belly laugh, or even a good joke that makes us smile wide enough to show all of our teeth, holds the power to cure most of what ails us. In my efforts to help you end your year on a more positive, uplifting note, and keep all those 2007 resolutions that you are making (or not) into perspective, I encourage you to read the words of one of favorite columnists, and my friend, John Schneider. John's words about his own failed New Year's resolutions in today's Lansing State Journal made me laugh as I choked down my healthy bowl of oatmeal sprinkled with wheat germ and blueberries, and prepared to wave bye bye to 2006.
I hope that John's refreshing, human take on our mad pursuit of New Year's perfection rarely achieved will brighten your year-end celebrations, and put your own take on New Year's goals into clearer focus, too. Enjoy!
www.lsj.com / John Schneider, columnist/ Sunday, Dec. 31st entitled: "I'm not perfect yet, but it could happen in 2007."
You can also check out John's blog at noise.typepad.com/John_Schneider
...And be sure to come back and read mine regularly, too!
So long 2006! I'm ready for you 2007! I think....
I believe that a hearty belly laugh, or even a good joke that makes us smile wide enough to show all of our teeth, holds the power to cure most of what ails us. In my efforts to help you end your year on a more positive, uplifting note, and keep all those 2007 resolutions that you are making (or not) into perspective, I encourage you to read the words of one of favorite columnists, and my friend, John Schneider. John's words about his own failed New Year's resolutions in today's Lansing State Journal made me laugh as I choked down my healthy bowl of oatmeal sprinkled with wheat germ and blueberries, and prepared to wave bye bye to 2006.
I hope that John's refreshing, human take on our mad pursuit of New Year's perfection rarely achieved will brighten your year-end celebrations, and put your own take on New Year's goals into clearer focus, too. Enjoy!
www.lsj.com / John Schneider, columnist/ Sunday, Dec. 31st entitled: "I'm not perfect yet, but it could happen in 2007."
You can also check out John's blog at noise.typepad.com/John_Schneider
...And be sure to come back and read mine regularly, too!
So long 2006! I'm ready for you 2007! I think....
Thursday, December 28, 2006
Taking Time Out for You!
One of the toughest realities facing parents of children with special needs is the loss of treasured personal freedom.
If you are thinking about making valuable New Year's resolutions that can make a difference in your life in 2007, consider personal time away from the demands of special needs high on your list of priorities.
Remember all those carefree hours you once spent going to the latest movies, hanging out with friends or going for a beer after work? What about all that free time you once wasted reading current magazines cover to cover, or gardening, washing the car, or singing along loudly to the radio on last minute weekend adventures to the beach?
Remember when you could actually take the time to shut the bathroom door to answer nature's call?
Gone in an instant.
These once simple daily decisions have been replaced by big family commitments and limited free time. But with thoughtful planning, you can begin to regain some of that precious time away for activities that will help leave you feeling refreshed and renewed. Reclaiming personal freedom in families of children with special needs often requires creative thinking and lots of juggling, especially if your child has physical, medical or behavioral needs that make finding, and keeping, babysitters difficult.
Then there is the sticky little issue of the costs involved with special needs parenting that often strain family budgets to the max, especially when one parent has given up their income to stay home and raise the children.
Don't let these realities stop you.
While such concerns can make time away seem like a luxury you can't afford, time away from the demands of special needs parenting is crucial to your physical, mental and spiritual health. Think of it as going to the well when you are very thirsty. A solid commitment to self care can help you better face the unexpected parenting challenges that lie ahead, and even handle them more successfully.
With a brand new year just around the corner, this is a great time to add personal time back into your life. Here are just a few simple and inexpensive tips designed to help you escape the demands of special needs in 2007, if only briefly.
Feel free to add some of your own- then go take a walk!
Address and Prioritize Child-Care Needs.
Seek support from family, friends and community agencies to meet this need. Knowing that you have help in place on a regular basis is priceless and grants you the freedom to take time out just for you, free of guilt.
Read a Favorite Magazine Cover to Cover.
Try to avoid tough-life stories and hard news. The idea is to lighten your own mental load for a bit so you can return to your parenting role feeling more inspired, motivated and relaxed.
Exercise!
Take long walks, go for a run, or work out in the privacy of your home. Jump rope, take a bike ride, or dance in front of the mirror. Exercise helps relieve stress and can heighten self esteem, enhancing your ability to handle your parenting challenges more effectively and more positively. Practice deep breathing, too.
Give Your Partner a Foot Massage.
Or just cuddle together on the couch and share your fondest hopes and dreams. Ladies: paint your toenails, condition your hair, shave your legs or take a bubble bath. Use great smelling lotions and soaps that help improve your mood.
Make Time for Those Leisure Activities that Matter Most to You.
Golfers can practice their swing in their own backyard or at a nearby park. Anyone can shoot hoops in the driveway or at a local playground, community center or during open gym at the local high school. Visit the library or go out for great java at a favorite neighborhood cafe. If you enjoy taking photos, carry your camera with you. There are lots of great photo ops to be had during those daily outings.
Advertise for Help in College Newspapers that Attract Students Majoring in Education or Health Careers who are Eager for On-the-Job Experience.
Once you have quality childcare in place, commit to a regular date night and make it a priority. Nurturing your relationship with your significant other can make a big difference in how you handle your special needs challenges, while also enhancing and further solidifying parenting teamwork.
Laugh!
Watch funny movies, tell funny jokes, ready funny stories, even laugh at the absurdity of your own parenting demands. Laughter is healing and a great stress release. And it's one terrific, and free, coping tool on the toughest days.
Journal.
Having a child with special needs produces a wide range of powerful emotions that need a healthy, safe release. Journaling helps us express strong feelings without fear of judgment or harm.
Nuture Your Faith.
Find solace in heartfelt, honest prayer. Whatever your beliefs, there is solace and comfort to be found in spiritual practices, especially during the most difficult days.
Visit Museums, Cathedrals and Synagogues.
The beauty of these places can feed your spiritual side, and your soul, leaving you refreshed and reconnnected with something larger than yourself.
Sit and Do Nothing.
Meditate or light a favorite candle. Quiet time is rare in families of children with special needs, and the addition of it to our hectic daily lives can prove healing, soothing and relaxing. When we are quiet, it is easier to hear our own voice, and as a result, become clearer on the parenting choices we need to make now.
Take a Nap!
Many parents of children with special needs often walk around sleep deprived. Taking a nap whenever you can to help support your body's need for additional slumber, may leave you feeling more energized and in a better frame of mind for facing your demands.
You can find more tips and resources to help you better meet the demands of parenting a child with special needs in my book Breakthrough Parenting for Children with Special Needs: Raising the Bar of Expectations.
JudyWinter.com
If you are thinking about making valuable New Year's resolutions that can make a difference in your life in 2007, consider personal time away from the demands of special needs high on your list of priorities.
Remember all those carefree hours you once spent going to the latest movies, hanging out with friends or going for a beer after work? What about all that free time you once wasted reading current magazines cover to cover, or gardening, washing the car, or singing along loudly to the radio on last minute weekend adventures to the beach?
Remember when you could actually take the time to shut the bathroom door to answer nature's call?
Gone in an instant.
These once simple daily decisions have been replaced by big family commitments and limited free time. But with thoughtful planning, you can begin to regain some of that precious time away for activities that will help leave you feeling refreshed and renewed. Reclaiming personal freedom in families of children with special needs often requires creative thinking and lots of juggling, especially if your child has physical, medical or behavioral needs that make finding, and keeping, babysitters difficult.
Then there is the sticky little issue of the costs involved with special needs parenting that often strain family budgets to the max, especially when one parent has given up their income to stay home and raise the children.
Don't let these realities stop you.
While such concerns can make time away seem like a luxury you can't afford, time away from the demands of special needs parenting is crucial to your physical, mental and spiritual health. Think of it as going to the well when you are very thirsty. A solid commitment to self care can help you better face the unexpected parenting challenges that lie ahead, and even handle them more successfully.
With a brand new year just around the corner, this is a great time to add personal time back into your life. Here are just a few simple and inexpensive tips designed to help you escape the demands of special needs in 2007, if only briefly.
Feel free to add some of your own- then go take a walk!
Address and Prioritize Child-Care Needs.
Seek support from family, friends and community agencies to meet this need. Knowing that you have help in place on a regular basis is priceless and grants you the freedom to take time out just for you, free of guilt.
Read a Favorite Magazine Cover to Cover.
Try to avoid tough-life stories and hard news. The idea is to lighten your own mental load for a bit so you can return to your parenting role feeling more inspired, motivated and relaxed.
Exercise!
Take long walks, go for a run, or work out in the privacy of your home. Jump rope, take a bike ride, or dance in front of the mirror. Exercise helps relieve stress and can heighten self esteem, enhancing your ability to handle your parenting challenges more effectively and more positively. Practice deep breathing, too.
Give Your Partner a Foot Massage.
Or just cuddle together on the couch and share your fondest hopes and dreams. Ladies: paint your toenails, condition your hair, shave your legs or take a bubble bath. Use great smelling lotions and soaps that help improve your mood.
Make Time for Those Leisure Activities that Matter Most to You.
Golfers can practice their swing in their own backyard or at a nearby park. Anyone can shoot hoops in the driveway or at a local playground, community center or during open gym at the local high school. Visit the library or go out for great java at a favorite neighborhood cafe. If you enjoy taking photos, carry your camera with you. There are lots of great photo ops to be had during those daily outings.
Advertise for Help in College Newspapers that Attract Students Majoring in Education or Health Careers who are Eager for On-the-Job Experience.
Once you have quality childcare in place, commit to a regular date night and make it a priority. Nurturing your relationship with your significant other can make a big difference in how you handle your special needs challenges, while also enhancing and further solidifying parenting teamwork.
Laugh!
Watch funny movies, tell funny jokes, ready funny stories, even laugh at the absurdity of your own parenting demands. Laughter is healing and a great stress release. And it's one terrific, and free, coping tool on the toughest days.
Journal.
Having a child with special needs produces a wide range of powerful emotions that need a healthy, safe release. Journaling helps us express strong feelings without fear of judgment or harm.
Nuture Your Faith.
Find solace in heartfelt, honest prayer. Whatever your beliefs, there is solace and comfort to be found in spiritual practices, especially during the most difficult days.
Visit Museums, Cathedrals and Synagogues.
The beauty of these places can feed your spiritual side, and your soul, leaving you refreshed and reconnnected with something larger than yourself.
Sit and Do Nothing.
Meditate or light a favorite candle. Quiet time is rare in families of children with special needs, and the addition of it to our hectic daily lives can prove healing, soothing and relaxing. When we are quiet, it is easier to hear our own voice, and as a result, become clearer on the parenting choices we need to make now.
Take a Nap!
Many parents of children with special needs often walk around sleep deprived. Taking a nap whenever you can to help support your body's need for additional slumber, may leave you feeling more energized and in a better frame of mind for facing your demands.
You can find more tips and resources to help you better meet the demands of parenting a child with special needs in my book Breakthrough Parenting for Children with Special Needs: Raising the Bar of Expectations.
JudyWinter.com
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