When Lorna Wyckoff's mother died ten years ago, part of her inheritance included partial responsibility for her adult brother John, who is intellectually challenged.
Wyckoff's examines that reality in a bittersweet essay in Sunday's New York Times Style section, sharing how she came to terms with this challenging new responsibility. The piece is a reminder of the valuable, complex and often life-long role played by sibs in special needs familes.
You can read My Brother's Keeper (Assembly Required) here.
Of all the inspiring special needs stories that I have heard or told during the past twenty years, and there have been many, few have touched me as much as the life story of Richard Prangley.
Prangley was wrongly institutionalized as a child and labeled a 'low-level imbecile' and 'unable to learn' by professionals. What Richard experienced after being committed by his family at age six to the former Coldwater State Home in Michigan is both horrific and inexcusable. But what this man has done since being freed from that setting at age 21, including becoming a passionate lobbyist for the developmentally disabled at high levels, is nothing short of remarkable, and a real tribute to the power of the human spirit to triumph over the toughest life circumstances.
You can view the two-part feature of Richard's remarkable live story on YouTube,here. Thanks to Elizabeth Kelly of the PBS program, 'A Wider World,' for doing an outstanding job translating a fascinating and complex life story for television.
I'm blessed and honored to call Richard Prangley, John Schneider and Elizabeth Kelly my friends. I'm thrilled to have been part of the effort to bring this inspiring story to the PBS program 'A Wider World,' and happy to share it with you on this blog.
Richard Prangley is one of the finest human beings I've ever met, and he has much to teach us all about the power of forgiveness and true faith. I suggest you share his story with everyone you know, and refer to it when you need a boost in your own daily life, especially when challenged by the daily realities of special needs.
Photo: Richard Prangley, Judy Winter and Elizabeth Kelly at RicStar's Camp 2010, where Richard received the 'RicStar' Award for Outstanding Special Needs Advocacy.
It's that time of year again when the back-to-school buzz is everywhere you turn.
But when you have a child with special needs, back-to-school prep is about more than shopping for shiny new backpacks, squeaky markers and the right bluejeans. It's about good student-teacher fits, working successfully with your child's team members, and meeting challenging IEP goals, while trying to realize some cherished parenting dreams. It's a highly emotional rite of passage for millions of families of children with special needs.
Not all back-to-school needs can be met at Walmart.
So I'm again pulling a sacred letter from my writing archives to provide you with some back-to-school inspiration to help calm your frayed parenting nerves. Letter to Eric was written to my son in 1995 as he left the safety of our family nest to test his fragile wings at our neighborhood school. It was an unnerving time, and an exciting one, too. Inclusion was a rarity and I was incredibly naive about the challenges and roadblocks that lay ahead of us. But I knew what I wanted for my child, and that first day of school milestone turned out to be the beginning of a challenging and rich journey filled with powerful life experiences that continue to fuel my work as a writer/speaker/advocate today.
Unfortunately, Eric passed away in 2003 at 12, ending our back-to-school adventures. But each fall, I feel Eric's strong presence, smell his sweet hair, see his enchanting smile, and remember with deep love and gratitude the back-to-school adventures of a lifetime that we took together.
May the heartfelt words of one adoring mother inspire you in much the same way as they continue to touch me. Perhaps you'll begin your own letter-writing tradition, something I highly recommend.
Now, pass the Kleenex......and have a wonderful first day of school! ______________________________________________________________
LETTER TO ERIC August 28, 1995
Today, as you begin kindergarten, I’m writing you a letter, a tradition I began with your big sister, Jenna, seven years ago.
The first day of school is a fall rite of passage, like brilliantly changing leaves, crisp evening air and earlier bedtimes. For our family, it also represents hard-won success. Some professionals believed the physical challenges of cerebral palsy would prevent you from learning in a regular school environment. Armed with cold, hard statistics, they warned of a life of segregation. But our family doesn’t bank on statistics. We invest in the human stuff, like love, faith and hard work.
We chose a different road.
From the moment you first dramatically graced our lives, we’ve focused on your ability. In turn, you have exhibited a spirit of survival that astounds me. We’ve endured too many moments of grief and ignorance. Yet, what I remember most is your first smile and giggle, your first word and your success at a regular preschool.
You are a wise and handsome child, with inquisitive brown eyes that miss nothing. Much of your ability to positively impact others has come from their first impressions of you as a cute child. Your long and lanky frame holds just thirty hard-won pounds, but you are far from being a lightweight in this life. There have been critical hospital stays, invasive procedures and moments when your life was in peril. But today, we celebrate school and a powerful lesson in letting go.
Today, our family is no different.
In your back-to-school outfit of GAP overalls, white Mickey-Mouse T-shirt and black Oshkosh shoes, you charm me. But there will be challenges. The ground we tread is fresh, presenting a challenge to those uncomfortable with inclusion, a word promising equal educational opportunities for all children. Some people won’t understand our fight and won’t want too. Yet, other educators will also teach from their hearts.
This will be a year of new challenges. When people assume physical challenges include mental impairment, you’ll be the first to forgive. I pray that others in this new world take time to discover how gifted and talented you really are. I want to meet the new friends willing to look past your wheelchair and into your eyes—and into your soul. I eagerly await book fairs, walking down school hallways and making red finger Jell-O at Christmas.
As your special bus disappears from sight, I’m a wreck. In a rare moment, I doubt. Are you ready? Am I ready? Your bus is equipped for wheelchairs and separates you from your able-bodied classmates. Someday, that too must change.
You grin at me through the tinted bus window. You are more ready than I am.
As the bright, yellow school bus disappears from sight, as its larger version did with Jenna many memories ago, I’m overcome with emotion. Safely inside, I release the tears of far too many harsh moments spent in the presence of people wrongly judging your value. But my tears of frustration and anger give way to unconditional love for the wise little soul who has become my greatest life teacher.
You are much wiser than most.
As you begin this new journey, son, you must continue to grow increasingly independent, just like other children. But I promise that dad and I will be right beside you ready to dry your tears on the roughest days, and thrilled to champion the dreams that others will try to tarnish.
On this exceptional day, words can only begin to express what I feel in my heart, Eric Richard Winter. Thank you for coming into my life and teaching me more than I ever thought I had to learn. I’m incredibly proud to be your mom.
With another school year about to descend, parents of kids with special needs need to educate themselves about their children's rights in order to advocate effectively within the often complex educational system.
For special education law and advocacy, Wrightslaw is a popular go-to resource for many families and professionals. It's valuable information presented in language even you and I can understand. In short, it's user and family friendly.
The Down Syndrome Association of Los Angeles (DSALA) is sponsoring their 2nd Annual 'Moms' Need Moms" Cruise for parents or family members who care for children with Down syndrome and other developmental disabilities. The three-night cruise is aboard the Carnival Paradise to Ensenada, Mexico. Departs Friday, January 28; returns Monday, January 31, 2011.
Yesterday, I shared my annual Back-to-School Quick Tips for Kids with Special Needs on this blog. Terri Mauro (about.com) cites my list and then adds some good tips of her own regarding b-t-s behavior challenges and clothing issues.
Photo: Judy Winter 2010. A Michigan high-school honor student shares his voice and advocacy at the 20th anniversary celebration of the Americans with Disabilities Act (ADA) in Lansing, Michigan, July 26.
Thanks to my friend, Gail Williamson, exc. director of the Down Syndrome Association of Los Angeles, (DSALA), I've just learned about one terrific resource-- the Dolphin Human Therapy Grand Cayman (DHT-GC) in the Cayman Islands. DHT-GC offers dolphin-assisted rehabilitation for children and adults with a wide range of special needs, incuding autism, cerebral palsy and developmental disabilities.
DSALA currently has a special offer from DHT-GC for a complimentary, 11-day Dolphin Human Therapy program, good until October 31, 2010, for children or adults with developmental disabilities. This generous offer also incudes discounts in lodging and car rental valued at $7,000. For more info, you can contact Gail at firstname.lastname@example.org.
You can learn more about Dolphin Human Therapy Grand Cayman (DHT-GC) here.
Two big flippers up!
Photo of Ava Burns courtesy of DSALA. Used with permission.
Back to School QUICK TIPS for Kids with Special NeedsbyJudy Winter / All Rights Reserved.
We know we shouldn’t judge others based solely on outward appearances and physical beauty. But in today’s celebrity-obsessed culture, looks do matter—especially as kids try to claim a coveted place in those unnerving and rigid school social hierarchies. For students with special needs who are at greater risk for teasing and bullying, that’s a tough reality. The social challenges facing these students as they try to fit in with their typically developing peers makes the annual back-to-school preparation rite especially important.
Here are five simple back-to-school tips for parents to help their children with special needs get off to a great school-year start—allowing them to navigate the often unnerving school hallways with a tad bit more confidence.
• Get your child a good haircut in a current style.
• Go back-to-school shopping with your child and allow him/her to select a cool backpack, necessary school supplies, and clothing.
• Outfit your child with stylish, up-to-date clothing, including a sharp new first-day-of-school outfit. If your budget is strained, shop discount stores, sales racks, second-hand shops and garage sales in upscale neighborhoods. Make preparing for the school year FUN for everyone involved.
• Pay close attention to your child’s personal grooming every day—that includes clean hair, clean body and clean clothes. It does matter.
• To help reduce stress and alleviate those first-day jitters, visit your child’s school before the school year begins and allow him/her to meet the teacher, principal and bus driver. Talk about what to expect on the first day of school in advance, especially with younger children.
As with other families, the choices made by parents of kids with special needs are key to determining that child’s educational and life success. Celebrate your child’s abilities everyday—and have a great school year!
After the son of award-winning Napa Valley winemakers Garen and Shari Staglin was diagnosed with Schizophrenia in 1990, they founded the International Mental Health Research Organization (IMHRO) to help fund monies for valuable mental health research for the 1 in 5 Americans who face such challenges.
Check out this terrific resource and the Staglin's family story here.
As an author, consultant, speaker, and award-winning journalist on special needs, I have the honor of creating greater awareness of the value and potential of millions of children and young adults with special needs worldwide. It’s work about which I am passionate. My book, 'Breakthrough Parenting for Children with Special Needs: Raising the Bar of Expectations' (Jossey-Bass/Wiley, March 2006), is dedicated to my terrific son, Eric Richard Winter, who had cerebral palsy and passed away in 2003 at age 12. Eric was much more than just a disabled child, and now I'm sharing his lessons about ability with the world. I help adults see children with special needs through new eyes and challenge them to work harder to help this population reach their full potential. You can find out more about 'Breakthrough Parenting,' and my amazing son, by visiting my website: www.JudyWinter.com. There, you will learn how you can help me raise the bar of expectations for millions of children with special needs— one child at a time. It’s one deserving— and very cool cause!