Good Friday Blessing

Perfect weekend for me to proclaim that without faith, I would never have survived the brutal hits life has served up and I certainly wouldn't be passionate about serving others. My footing is less steady and sure than it once was, but I'm much less naive and less selfish and much more forgiving and quieter, humbling in itself. I believe what I cannot prove and that has made all the difference.

Good Friday blessing.

Where do you draw your strength?

Judy Winter Photography 2013. All rights reserved.

Recap of 2013 End-the-Word Campaign: Celebrity Twitter Support:

For me, this is an especially powerful view. I've worked so hard for so long to see this kind of media/celebrity focus/support placed on important human rights awareness for the special needs population and for my son, including the growing push to end use of the word retarded. 

The big-name support voiced on this video represents huge progress. My hope is you'll add your vote for RESPECT, too.

Make no mistake. Words do hurt, especially the r-word.

Judy Winter Photography. All rights reserved.

In honor of National Cerebral Palsy Awareness Day, my son, Eric Richard Winter.

Gone, but never forgotten.

Your music lives on, always.

A Tale of True Friendship. Michigan State University Basketball Star, Adreian Payne, and One of His Biggest, Little Fans, Lacey Holsworth.

Little Spartan Fan. Judy Winter Image 2013.

Here's a side of sports I like and a March Madness story worth your time. It's a moving friendship born of mutual life adversity. Lacey Holsworth had neuroblastoma, a childhood cancer. Michigan State University Basketball star athelete, Adreian Payne, has Attention Deficit Hyperactivity Disorder (ADHD) and has worked hard to overcome the naysayers.

As an MSU alum, I couldn't be prouder. I hope both, stay strong.

Watch Lacey's story, here.
Read more about Adreian Payne, here.

Whose life will you impact this week?

The Pooch of the People Celebrates World Down Syndrome Day

Jack is rockin his socks for today's World Down Syndrome Day! Then, we're off to school to read to the kids for March is Reading Month. Plus, it's also Cerebral Palsy Awareness Month. March is a busy time for this advocate and the Pooch of the People. But we're up for the challenge, right Jack?

Who are you advocating for today?

Judy Winter Image. All rights reserved.

March 21st! In honor of today's World Down Syndrome Day.  Rock those socks!

Image courtesy of World Down Syndrome Day.

March 21st is World Down Syndrome Awareness Day.

Got socks?

Judy Winter Photography. All rights reserved.

Judy Winter Photography. All rights reserved.

Is Gaga 24-K Golden??

To-Get-You-Talking Thursday: 
First, let me say I like Lady Gaga. I think's she incredibly talented and does a lot of good speaking up for many who otherwise feel they have no voice or can't get it heard. She's not afraid to makes waves and gets people talking. She fights bullying, all of which I like. 

She celebrates and embraces vast differences. Me, too.

Gaga's got tongues a wagging today over her new 24-K Gold wheelchair. Some have taken her to task for glamorizing disabilities, which doesn't bother me as much as it does some others.Why? Because I think all that talk about Gaga being Gaga, complete with chair choice, glamorous or not, helps create more media awareness and big talk for the special needs cause. That's always good.

Might all the ruckus even help normalize wheelchair use a bit?

My immediate reaction to this new Gaga story? The gold and all those other expensive special needs bells and whistles could have paid for many simpler wheelchairs for regular folks who can't afford one or whose insurance request is denied. 

That's where I take offense. 

Perhaps Gaga will consider contributing $$$$ to organizations that help purchase chairs for those in need or perhaps purchase a few herself. That would be Gaga cool.

Your reactions, Little Monsters and the rest of the world?

Photo above: Reality check. A more common sight? A chariot without all the bling and a ride that's not temporary.

Here's the story.

Special Needs Casting Call for Toys R Us Annual Catalogue for Diffently-Abled Kids!

Ages 12  months to 10 years. 
Find out details here.

Kudos to Toys R Us.
2012 catalogue image courtesy of the retail giant.

Emily Rapp. Dragon Moms and Two Grieving Moms.

Author/grieving mom, Emily Rapp's powerful piece and interview on this morning's Today Show resonates with me even more than most because I, too, lost my son in cold, cruel February. My loss was ten years ago and one day later. My son lost his life to complications of cerebral palsy.

We both shared children with big medical challenges, beautiful, smart, charming, much-loved children fully included in our lives and in the world. We both tried and continue to try to make sense of devastating loss for which no explanation will ever be calming enough. 

We both chose to help honor our children's lives and help change the lives of others, including by writing and becoming authors about our remarkable and painful journeys. I devoted an entire chapter in my book to facing the death of a child and included a powerful essay about my loss. Rapp details the day-to-day challenges of living with a child she knows is going to die from Tay- Sachs disease, an insidious diagnosis for which there is currently no cure.

Any mother and father can benefit from Rapp's wise words, fresh in their grief and from mine, lessons learned from more than a decade in survival mode. We share similar, hard-won advice from parenting battlefields of grief. We share the joy, the lessons and the love of a child that helps turn you into a bit of parenting sage: Enjoy your children. Be fully present. Ease up. Your children are not projects. They are, however, great teachers. But we must open ourselves up and sit still long enough to learn their lessons.

I hope you take our parenting advice to heart, especially while your children are still yours to squeeze tightly to your chest. Savor the blessings. It can all be over in the blink of an eye.

Special note: A parent never gets over the death of a child. You just learn how to go on breathing moment by moment of each challenging new day, until the horrific stinging finally begins to ease. Finding purpose in sharing your own tough story of loss, while honoring a beautiful child's legacy in the hope it serves others, helps, too. In so doing, somehow, you can survive this loss, even find joy again.

That much I know.

Watch the Today Show interview and find link to Rapp's new book, here.

More great r-word awareness. 

You tell 'em, Frank!

WORD GONE WRONG:

An brief, but insightful New York Times Op-Ed piece about the Spread-the-Word campaign. 

Well said/written, Mr. Downes.  Word Gone Wrong. 

"When you know better, you do better." -Maya Angelou

Today is the annual Spread-the-Word-to-End-the-Word campaign, one given birth by Special Olympics and fueled by its talented, hard-working and proud athletes. 

As a writer, I don't usually endorse censorship. But I don't promote use of (or use) any hate speech either. That's what the word retarded now represents to millions worldwide. 

Have you ever heard anyone use the word to build someone up? 

Like other minority speech we loudly denounce and react quickly to, the r-word reinforces painful, outdated and limiting stereotypes. Because of my son, wrongly judged to be intellectually challenged due to wheelchair use and limited motor/speech skills, I know firsthand the daily, painful, tough judgement faced by more than 200 million people worldwide with intellectual disabilities (current, accepted terminology) because of the ignorance and insensitivity fueled by the continued, casual and ugly use of this word as a put down.

I choose to show Respect to others instead. What about you? At the very least, I hope you will consider talking with your children about not using the word, especially to put others down. Teachable moment.

Make no mistake, words do hurt, especially this one.

Find out more, here.

If you want to read a past post of mine that further details why the r-word can be so hurtful, click here.

Photo of RicStar Camp participant by Erik Taylor Photography. All rights reserved.

Tuesday's TV Alert! The beauty of the Internet is that if I miss promoting something worthy before it airs, you can still catch it after the fact. Monday's episode of Switched at Birth is one worth your time. After the first scene, it's all in American Sign Language (ASL). 

Watch it here.

Kudos to all involved in this ground-breaking program/episode.

JudyWinter.com

Special offer to Winter Ramblings readers. 

Your chance to see the play TRIBES in Los Angeles at a reduced ticket cost. If you go, please send me photos of your evening to share with the producers. Read on for all the details.

TRIBES

Written By Nina Raine

Directed by David Cromer

Mark Taper Forum

Feb 27 – April 14, 2013                                                                      

“Unquestionably, one of the best new plays of the year! - The Huffington Post

“A smart, lively and beautifully acted new play that asks us to hear how we hear, in silence as well as in speech.” - The New York Times

From the press release:

Billy is in love. For the first time in his entire life as a deaf person, he has found someone who listens to him.  Now Sylvia, on the brink of losing hearing herself, must pass inspection with the family: four dynamically dysfunctional adults living together at home where conversations are filter-free and no topic is taboo except one: why didn’t Billy or his family ever learn sign language?

Experience this intimate play like never before at the Taper. Available for this production, a limited number of $20 on stage seats are available. This audience will be “up close” to the action, from the comfort of a theatre seat. With only 6 seats in each row, on stage seating brings the audience closer to the personal touches director David Cromer brought to his off-Broadway production. Click here to see a pdf of the Taper seat map including on stage seating locations. Due to their unique nature, these tickets are not available for late seating, wheelchair accessibility or those who need to leave their seat during the performance.

Special Ticket Offer!
Just $37 (Reg. $50) for select performances in Section A.  Valid for evening performances February 27 and 28 and March 3, 5, 6 and 7.  To purchase tickets call 213-628-2772 and mention code SILENCE or online here.

*Subject to availability.  Not valid on previously purchased tickets.  May not be combined with any other offers.  Offer applies to Section A seating only.  

Reminder: While I am posting here, most of my special needs daily posts now appear on my professional Facebook page. Here are the links to  my current social networking sites.

Facebook- Special Needs Parenting Posts

Pinterest- Special Needs Parenting Board-Fav Resources

Twitter-Judy Winter

Tumblr-Winter Visions: pretty things. pretty words. pretty images. General interest blog.

Did You Know?

March is National Developmental Disabilities Awareness Month.  

Find out more, here.

RicStar's Camp Update:

Drum roll, please! Registration for the 11th annual RicStar's Camp is now open to ALL. Go forth and make merry music, but get registered first. 

Celebrate Abilities, too!

Details here.


Erik Taylor Photography. All rights reserved.

RicStar's Camp Update!

Reminder to all RETURNING RicStar's Camp participants! Just two more days before registration and all the music making and fun open up to ALL. Secure your place now. Camp will be full. Wait list rarely, if ever, moves. You've been warned. :)

Focused on Celebrating Abilities!

Find out more here.

Erik Taylor Photography. All rights reserved.

The Sandwich Kid & Special Needs Sibs:

A few years ago, I was involved in a wonderful sibling project called, The Sandwich Kid, a short film about the role of siblings in special needs families. Filmmaker/friend/mom, Keri Bowers, just re-shared this wonderful work with me and now I’m sharing it with you. I’m proud to have been part of this valuable effort, one that still has great impact today. See it here.

If you can’t watch the entire promo but would like to hear my words, I come in around 6:30. But I think the entire piece is worth your time and view. You can find out more about the complete video of The Sandwich Kid and Keri’s other work on special needs here.

Siblings of brothers/sisters with exceptionalities will always be my heroes. 

Faces of Ability: Evan Fiorella

My hubby and I loved having dinner  last night with our Canadian friends and RicStar's Camp participant, Evan Fiorella and his terrific mom, Alison. We are so proud of Evan and inspired by his amazing talent and determination in light of the challenges of having cerebral palsy and  wheelchair use. 

Here is a recent State News feature on Evan and his love for and study of music at Michigan State University's Community Music School. Well worth the read. Makes me proud to be a Spartan.

We're also incredibly proud that RicStar's Camp exists. Music changes lives. So do great families like the Fiorellas.

What's your child's big dream?

Heads up! Get on board with the new R-word. Respect.

http://www.r-word.org.

Yeah, I like that.

Today, I remember my son, my muse, my greatest teacher, Eric 'RicStar' Winter. Reflecting on rich lessons learned from a light that still shines so brightly. Gone a decade. Gone too soon. 

Forever in my heart.

Judy Winter Photography. All rights reserved.

Reminder: Most of my special needs posts now appear on my professional Facebook page. Here are the links to  my current social networking sites.

Facebook- Special Needs Parenting Posts

Pinterest- Special Needs Parenting Board-Fav Resources

Twitter-Judy Winter

Tumblr-Winter Visions: pretty things. pretty words. pretty images. General interest blog.

Brief update to the post below and others like it, Sometimes I'm asked if publicly addressing/flogging such naughty behaviors only adds to the person's fame/name/time in the media spotlight. In this case, I don't think Joan Rivers needs my help with fame. She's already got it.

What people sometimes don't fully understand about my work is that one of the big responsibilities I've taken on as a special needs advocate/writer is to not remain silent, always shake it off, join in the nervous snickering and then quietly go away when the special needs population is insulted or worse. Whether or not the person in question ever apologizes isn't the point. Although, if they do, it's a bonus.

I boldly speak up in hope of bringing greater awareness, sensitivity, understanding and much-needed intelligent conversation about those with special needs to help counter the on-going perpetuation of deep-seated ignorance, stereotypes and insulting behaviors about disability that exist today. I bring words to light and examine them. That's part of my job and I hope my actions help give others permission to speak up, generate valuable conversation and become effective advocates in their own way.

In short, I believe strongly that:
Saying nothing. 
Doing nothing. 
Changes nothing. 

And changing nothing goes against everything my passionate work/advocacy of the past twenty years stands for. So, expect more calling-them-out mini rants from me in the future. I call it balancing things out and working loudly for needed change.  You can agree or disagree with what I write. 

My hope is you'll raise your voices where needed, too. There's already way too much silence.
_____________________________________

Tuesday a.m. Mini Rant: Special Needs Slap on the Head to Joan Rivers, always focused on rudely bullying everyone with her nasty tongue. 

In recapping 2013 Grammy fashion hits/misses on E's Fashion Police, Rivers slams one artist wearing a dress she doesn't like by saying: "She looks like the Homecoming Queen for the Special Olympics." Yes, she said that.

In a world increasingly focused on the devastating effects of bullying, why does E/Fashion Police think this woman and her rude, hurtful digs add anything to this show? I just turn it off.

You can do better, E.

You, too, Joan Rivers. You're old enough to know better.

Weekly Special Needs Coverage TV Alert Recap. 

It's been a good week for awareness for a diverse range of exceptionalities. Check out a couple of my favs on my Facebook page. Kudos, Katie Couric and Ricki Lake!

Monday Mini Rant: 

A couple of days ago, I viewed a great video piece about a young man with special needs. Overall, it was well reported and powerful. But, as too often is the case, it also included an introduction to the story that included the words, 'the man 'suffers' from..... (name of his disability). An unnecessary, negative word that detracted from otherwise good reporting. It also suggests an air of pity.

So here's my reminder to the media. Please, try to refrain from using the word 'suffer' or 'suffering' whenever you are reporting on or writing about someone with special needs. 

How do you know they are suffering?

Better to simply say/report that the person has.....(name of condition), rather than suffers with.....
Please, lose the emotional, lacking-in-objectivity embellishment, one which may or may not be accurate. Thank you!

Monday Mini Rant over.  

Special Note: Here's an Article I penned a while back to help your further understand why such word usage is especially sensitive to many families facing the challenges of special needs parenting. 

When you know better, you do better.

Ravens Superfan, Matthew Jeffers, Gives Powerful Perspective on Super Bowl XLVII and On Life and Helps Redefine Disability

"The only disability in life, is a bad attitude." -Matthew Jeffers

As Super-Bowl Sunday approaches and the yearly sports furor escalates to new heights, here's some perspective from Baltimore Ravens superfan Matthew Jeffers, a 21-year-old acting student and senior at Townsend State University in Maryland. 

Jeffers, who is short statured, has boldly faced many tough life challenges and is now facing one more. His mother may be dying. Jeffers recently sent an e-mail entitled, 'A Reason to Win,' to Ravens Head Coach, John Harbaugh, hoping to fuel his team on to victory. Jeffer's words got the coach's attention big time. If the Ravens win on Sunday, they should offer a special thanks to Jeffers, who just may have provided the team with that special extra something and golden motivation needed to win it all. 

Everybody should view Jeffers powerful message. It's better than the Super Bowl commercials. Yes, it is. The media is all over this feel-good story. You'll be hearing more.

Thank you, Matthew Jeffers, for putting the game of life into perspective so beautifully.

Click here to watch the Ravens superfan  deliver his powerful words/performance.

A star is born, one focused on ability.

ANNOUNCING REGISTRATION FOR RETURNING CAMPERS FOR THE 11TH ANNUAL ERIC 'RICSTAR' WINTER MUSIC THERAPY CAMP:

Drum roll, please! 

Announcing the 11th Annual Eric 'RicStar' Winter Music Therapy Camp at Michigan State University's Community Music School (MSU/CMS) in East Lansing, Michigan. As we open the camp doors for our second, terrific season of celebrating music and abilities, there are a few important changes. First: New location in the beautiful, newly renovated Community Music School on Hagadorn Road right across from the gorgeous MSU campus. Second: We will have two camps this year, instead of just one. 

-Children and adolescents will make music on Monday, Tuesday and Wednesday, June 10th thru June 12, 2013. 

-Adults will attend camp on Thursday, Friday and Saturday, June 13th thru June 15th, 2013. 

-For returning campers, that means the yellow/green/pink/orange groups will meet Monday thru Wednesday. The blue/lime green/purple/red groups will meet Thursday thru Saturday. 

-Both camps will have an end-of-camp Be-a-Star Showcase and all campers will perform on stage. 

-Returning campers can mail in the required registration form with payment beginning TODAY! Camp fees are $195 per camper and $375 for two campers/same family. 

-Campers five years old and younger will have the option of attending in the morning or in the afternoon. The fee for the half-day campers is $100. 

-The 2013 RicStar's Camp will begin accepting NEW campers on March lst.  That means that returning campers must have their registration form/payment in the CMS office BEFORE March 1st.  Reminder: camp fills up quickly each year and the wait list rarely moves.

-Repeat: You must have your completed registration form/payment into the CMS offices asap in order to hold a place on the camper list. Please, make sure you sign the registration from on the front AND back. 

-Contact Cindy Edgerton, RicStar's Camp director, if you're intersted in receiving financial aid or if you have additional questions, including opportunities for campus lodging. 

RiStar's Camp focuses on ability, modeling inclusion and celebrating the power of music to change lives. We also have lots of fun. See you at summer camp!  

Note: CMS is currently updating their site with the 2013 info/registration. If needed, you can also download the 2013 registration form at my website JudyWinter.com, click on RicStar's Camp page.

Reminder: Most of my special needs posts now appear on my professional Facebook page. Here are the links to  my current social networking sites.

Facebook- Special Needs Parenting Posts

Pinterest- Special Needs Parenting Board-Fav Resources

Twitter-Judy Winter

Tumblr-Winter Visions: pretty things. pretty words. pretty images. General interest blog.

NEW INTERVIEW-HOLIDAY TIPS AND SPECIAL NEEDS FAMILIES:

I was hoping to have my recent December interview about special needs holiday tips before now, but better late than never. Hopefully, this will provide you with on-going support for all those future gatherings/celebrations. It's not seen during this interview, but my book's title is, 'Breakthrough Parenting for Children with Special Needs: Raising the Bar of Expectations.' I'm also an expert contributor to the book, 'Easy to love but Hard to Raise: Real Parents, Challenging Kids, True Stories.' My words also appear in the book, 'A Special Kind of Love: For Those Who Love Children with Special Needs,' and in dozens of newspapers/magazine columns and features, both in print and online. Reminder, that you can also access most of my new posts on Facebook. Facebook Page-Special Needs

Interview on You Tube: 
Holiday Tips and Special Needs Families

Former Interview about my book on this same program:
Special Needs Families/Judy Winter-Author

You can find samples of some of my national interviews at JudyWinter.com/media page.
Judy Winter Website/Media Page

Reflections on Sandy Hook

I will begin this new week as I have done after each new senseless loss and tragedy, especially after the death of my own son, with acts of kindness. And, my certified therapy dog, Jack, and I will return to serve our local elementary school of 2nd/3rd graders this week with more than just coveted holiday candy canes and reindeer ears (Jack). We will bring with us renewed purpose, more open hearts and listening ears, tighter hugs and greater appreciation for the tough work facing the educators/staff daily, many of whom I know would do exactly what those at Sandy Hook did. We don't respect this profession nor support it nearly enough, even as so many of our children arrive with increasingly complex needs. That, too, must change. 

Will you please join me with your own actions of compassion this week? You won't have to look far to uncover a need. Promise. 

Less rhetoric. More action.





















My angel and greatest teacher, Eric Richard Winter. Jenna Winter Photo.

Reminder: Most of my special needs posts now appear on my professional Facebook page. Here are the links to  my current social networking sites.

Facebook- Special Needs Parenting Posts
Pinterest- Special Needs Parenting Board-Fav Resources
Twitter-Judy Winter
Tumblr-Winter Visions: pretty things. pretty words. pretty images. General interest blog.

Since all those festive commercials will soon be in full force, I've decided to post my annual holiday tips early, too. My hope is that the tips that are part of Creating Holiday Magic for Kids with Special Needs help make your celebrations a bit more joyful, no matter what traditions you honor. Feel free to share these tips, but please credit JudyWinter.com/2012. All rights reserved.

____________________________________________

Creating Holiday Magic for Kids with Special Needs:

-Interact with family members with special needs, and encourage others to do the same. If the child uses a wheelchair, kneel to eye level and address the child directly. Allow other kids in the family to buddy up and assist the child with special needs in hanging ornaments, frosting cookies, setting the table, or passing out presents. Help that child participate whenever possible, while teaching other kids in the family valuable, lasting life lessons.

-Practice forgiveness whenever possible. Most family members don’t intentionally set out to exclude children with special needs. They often require education, support and positive examples to bring them up to speed. By focusing on creative solutions, families can help realize holiday magic for kids with special needs, too— and that’s in keeping with the spirit of the season.

-Buy age/skill-level appropriate gifts for the child with special needs. Regardless of how well intentioned, inappropriate gift selection for children with special needs hurts. When in doubt, ask parents for gift ideas, or obtain a copy of the child’s holiday wish list. Reserve baby toys (and baby talk) for babies! Key Note: Toys 'r Us offers an annual Toy Guide for Differently-Abled Kids, 'a toy selection guide 'for parents and friends of children with disabilities,’ to ensure the holiday toy wishes of kids with special needs come true, too. The 2012 guide with Nancy O'Dell on the cover can be downloaded here: Toys R Us.

-Communicate! Don't assume others can read your mind. They can't. Instead, arrange family meetings to discuss your child’s needs and how to best address them. Provide needed training and brainstorm ways to include the child with special needs in family activities. For example, if a he/she uses a wheelchair, address accessibility issues and plan activities in locations that don’t involve stairs. Speak up now to help prevent bigger misunderstandings and hurt feelings later on. Family members, you can reach out and initiate problem solving, too. Our children are always worth our best efforts, and your support to these families is priceless.

-Redefine your expectations. Throw all those visions of a perfect Hallmark family holiday right out the garland-draped window! Instead, ask what memories you want to create for all of your children. Having a child with special needs does not mean you must forgo memorable and fun holiday moments and traditions. Think creatively! It's worth the effort.

-Inclusion is the name of the game! Kids with special needs are children first, with big dreams and long holiday wish lists, just like other kids. Whenever possible, include the child in holiday festivities and activities like tree trimming, baking cookies, shopping for gifts, and attending church services (use the cry room if needed). Include that child in family holiday photos and videos, too.

-Address food allergies and noise/touch sensitivities and make allowances for them. The seasonal bounty this time of year can result in overload for many children, especially those with sensory, auditory and food issues. Kids with food allergies may not be able to eat all the traditional goodies most of us eagerly gobble up. Discuss alternative choices and inform family members about any life-threatening food allergies so they don’t offer the offending food to the child.

Wishing you the happiest of holidays!

Judy Winter

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

https://www.facebook.com/BreakthroughParentingForChildrenWithSpecialNeeds
Winter Ramblings Blog

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Reminder to those visiting  my blog. I am now posting most special needs parenting comments/resources/links on my Facebook page Breakthrough Parenting for Children with Special Needs. Here's the link: