Saturday, May 10, 2014

Ode to Special Moms

Erma Bombeck was an American humorist who achieved great popularity for her newspaper column that described suburban home life from the mid-1960s until the late 1990s. She also published 15 books, most of which became bestsellers. Erma learned to laugh because of – or in spite of – being born with incurable polycystic kidney disease, which ultimately led to daily dialysis, a kidney transplant, and her death in 1996 at age 69.

She could make you laugh and cry at the same time, ergo this poem:

Ode to Special Moms

Most women become mothers by accident, some by choice, a few by social
pressures and a couple by habit.

This year, nearly 100,000 women will become mothers of handicapped children.
Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over Earth selecting his instruments for
propagation with great care and deliberation. As he observes, he instructs
his angels to make notes in a giant ledger.

"Armstrong, Beth, son, patron saint, Matthew. Forrest, Marjorie, daughter,
patron saint, Cecilia.

"Rudledge, Carrie, twins, patron saint, give her Gerard. He's used to

Finally, he passes a name to an angel and smiles, "Give her a handicapped

The angel is curious. "Why this one, God? She's so happy."

"Exactly," says God. "Could I give a handicapped child to a mother who does
not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of
self-pity and despair. Once the shock and resentment wear off, she'll
handle it.

"I watched her today. She has that feeling of self and independence that is
so rare and so necessary in a mother. You see, the child I'm going to give
her has his own world. She has to make it live in her world, and that's not
going to be easy."

"But, Lord, I don't think she even believes in you."

God smiles. "No matter. I can fix that. This one is perfect. She has just
enough selfishness."

The angel gasps, "Selfishness? Is that a virtue?"

God nods. "If she can't separate herself from the child occasionally,
she'll never survive. Yes, here is a woman whom I will bless with a child
less than perfect. She doesn't realize it yet, but she is to be envied.
She will never take for granted a 'spoken word.' She will never consider a
'step' ordinary. When her child says 'Momma' for the first time, she will
be present at a miracle and know it! When she describes a tree or a sunset
to her blind child, she will see it as few people ever see my creations.

"I will permit her to see clearly the things I see . . . ignorance, cruelty, prejudice . . . and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing my work as surely as she is here by my side."

"And what about her patron saint?" asks the angel, pen poised midair.

God smiles. "A mirror will suffice."
— Erma Bombeck, 1980

Need more inspiration?
Read more inspirational poetry and verses written by parents who have children with special needs or disabilities. Their words are inspirational and often empowering. Most of all, these words remind us that we are not alone.

Are you a mother of a special needs child?
If you can't get out much you can still share with mothers who experience the same struggles as you do. Join Circle of Moms.

Are you the mother of a child with autism?
You can join moms like you at special events or support groups. For further information go to the Wake County Autism Society.

Are you a mother of a child with Downs Syndrome?
The Triangle Down Syndrome Network supports, educates, and connects individuals with Down syndrome, their families, and communities in North Carolina.

Wednesday, April 2, 2014

Go Blue for Autism

Every year, autism organizations around the world celebrate the day with unique fundraising and awareness-raising events.

What can you do for Autism day?

  • You can wear blue.
  • You can place a blue a blue light in your window.
  • You can say a prayer for compassion and tolerance for individuals with autism and their caregivers.
  • You can support the Autism Society of North Carolina.
  • You can let a special-education teacher know how much you care.
  • You can let young adults with autism know there are jobs available for them.
  • You can let young adults with autism know that companies find autism can be a job skill.
  • What will you do for Autism day?

Thursday, March 6, 2014

Keeping Up: Blogging Down Syndrome

Hey parents - Grandparents - Friends!

Want to share your experiences with others about someone you know with Down syndrome? Looking for answers on raising a child with this disability?

You are not alone. Try blogging. (Blog is short for web log, an easy, instantly and frequently updated website.)

There are literally thousands of others with the same questions. And many with answers. They are willing to share their experiences through blogging. These are people from all walks of life who want to help and support parents and families of individuals with Down syndrome through fellowship and action.

You can do the same. You, can stay knowledgeable, get immediate feedback and share common interests. So stop spinning your wheels – there IS help out there!

Here is one from parents: Nella Cordella: A Birth Story

There are even some bloggers with Down syndrome.
(My name is Sarah will touch your heart.)

Here are just some of the blogs rated "best." A few are actually blogs about other blogs (e.g., Noah's Dad)

32 of the Very Best Downs Syndrome Blogs

Down Syndrome: A Day to Day Guide

Down Syndrome OPTIONS

Down Syndrome in the Blogosphere

So blog away! I pray that all this helps you.

Tuesday, February 18, 2014

It's Good to be a Robot!

The 5 Coolest Robots for Kids With Autism
October 11, 2012 – These lifelike machines are helping children on the spectrum interact and pick up on social and emotional cues. – - Jenny Inglee

1. Robot Dances Its Way From Autism Therapy to Toys `R' Us
Aug 11, 2011 – My Keepon was originally developed as a therapeutic tool for autistic children who can be overwhelmed by face-to-face interactions. The creators teamed up with toy maker WOW! Stuff, which agreed to dedicate a portion of revenue to autism research. Toys "R" Us Inc. has exclusive rights to sell the robot in the U.S. – Bloomberg Businessweek's Ashlee Vance reports. (Source: Bloomberg)

2. Kaspar the Friendly Robot Helps Autistic Kids
Mar 8, 2011 – Eden Sawczenko used to recoil when other girls held her hand and turned stiff when they hugged her. This year, the 4-year-old autistic girl began playing with a robot that teaches about emotions and physical contact – and now she hugs everyone. – Associated Press

3. A Story of Robots and Autism
Apr 25, 2013 – The young boy, Jack, shyly approaches his friend in a classroom at Whiting Lane Elementary School. This is the last time they’ll see each other, and Jack has a gift for his playmate: a picture of the two of them together, and the words, “I’ll miss you.”
A common enough scene, except the “you” in this case is a humanoid robot programmed by researchers affiliated with the University of Connecticut and Movia Robotics to help children with learning delays like those on the autism spectrum improve their social and communication skills. To learn more about the robot project, visit: UConn

4. RoboKind ZENOs : robots for research
Mar 9, 2011 – Priced from $8,500 to $14,750, RoboKind robots bring you amazing Hanson facial expressions on walking bodies, for the most lifelike robots in the world. With hi-def cameras, numerous sensors, software API, Maxon motors and a powerful embedded computer, RoboKind robots are perfect for RoboCup, robotics, and psychology research. – Robokind Robotics

5. Robots teach communication to kids with autism
Apr 29, 2013 – The learning tools, made by French company Aldebaran Robotics, are being used to teach children with autism about the subtleties of human communication and emotion and to bring them out of their shells in the classroom. – Aldebaran Robotics, NBC's Michelle Kosinski

Tuesday, January 21, 2014

Movies from Another Planet

The presence of people with disabilities on the screen – both big and small, as both documentary and fictitious characters – can only help to remove the taboo of disability and activate the inclusion of those with disabilities. Here are five movies worth watching about and featuring special children.

My Left Foot (1989)
Watch this unforgettable but inspiring clip!

This classic is based on the autobiography of Irish writer and painter Christy Brown (Daniel Day-Lewis), who had cerebral palsy. Growing up impoverished in Ireland, Brown had very limited communication as a child, but went on to use the tremendous dexterity in his toes not only to write, but to paint and have a remarkable art career. Daniel Day-Lewis and Brenda Fricker both won the Academy Award for Best Actor in a Leading Role and Best Actress in a Supporting Role, respectively.

Lorenzo's Oil (1992)
Trailer:                                                       Movie:
Susan Sarandon and Nick Nolte give brilliant performances as parents trying to save the life of their son Lorenzo in George Miller's harrowing and heartbreaking Lorenzo's Oil. They are told that Lorenzo has been diagnosed with adrenoleukodystrophy (ALD), a rare and incurable nerve disease that is always fatal. When they are told to be patient as they watch their son sink further into the debilitating illness, they take matters into their own hands and start their own investigation of the disease. The cast includes 16 special children. Based on a true story.

Son-Rise: The Miracle of Love (1979) (with Spanish subtitles)

Starring James Farentino and Kathryn Harrold. Barry Neil Kaufman and his wife Samahria won the Humanitas Prize for their screenplay of this NBC docudrama, after helping their once-autistic son Raun emerge from the “incurable” illness of autism. Adapted by the biographical book Son-Rise (currently Son-Rise: The Miracle Continues), it is the real life story of how, according to his parents, Raun Kaufman completely recovered from severe autism.

Praying with Lior (2007)
Trailer:                                                      Movie:

This tracks the real-life journey of Lior, a boy with a comparatively mild form of Down syndrome, as he prepares for his Bar Mitzvah. The film moves beyond the logistics of living with Down syndrome and explores the interaction of disability and faith.

Monica and David (2009)

An upbeat story of a married couple with Down syndrome and their quest for independence. These two high-functioning adults find that as close as they come to living a “normal” life, it always seems out of reach. Available on Netflix.

Tuesday, January 14, 2014

Letters from Another Planet

Three good books written about and by people with autism.

Autism Heroes: Portraits of Families Meeting the Challenge

About the Book: Autism Heroes provides a compelling and sensitive account of the experiences of 38 families from different walks of life confronting the challenges of autism with courage, tenacity and love. With empathy and expertise gained from her three decades of leadership of The Help Group and her commitment to children with special needs, Dr. Barbara Firestone engages the families in candid, powerful and deeply affecting conversations about their lives.

Review: Autism's Heroes is a gift to the autism community. Raising a child with autism has never been easy, but it just got easier, thanks to Barbara Firestone's wisdom and compassion, Joe Buissink's sensitive images and the courageous families willing to share their most intimate stories. Pediatricians can now say to families coping with a new diagnosis, "Have I got a book for you!" — Eileen Costello, MD

Thinking in Pictures: My Life with Autism

About the Book: Here, in Temple Grandin's own words, is her story of what it is like to live with autism, to be among the few people who have broken through many of the neurological impairments associated with autism. She describes her painful isolation growing up "different" and her discovery of visual symbols to interpret the "ways of the natives." Thinking In Pictures is written from the front lines of autism, including treatment, medication, and diagnosis. Ultimately, it is Temple's unique ability to describe the way her visual mind works and how she first made the connection between her impairment and animal temperament that is the basis of her extraordinary gift and phenomenal success. About her book Temple says: "I don't want my thoughts to die with me. I want to have done something ... I want to know that my life has meaning ... I'm talking about things at the very core of my existence."

In 2010 Temple Grandin was named one of Time Magazine's 100 Most Influential People. In the same year, an HBO movie about her life, Temple Grandin, won the Emmy award for Outstanding Made for Television Movie.

Nobody Nowhere: The Remarkable Autobiography of an Autistic Girl

About the Book: Donna Williams was a child with more labels than a jam-jar: deaf, wild disturbed, stupid insane...She lived within herself, her own world her foreground, ours a background she only visited. Isolated from herself and from the outside world, Donna was, in her words, a Nobody Nowhere.

She swung violently between these two worlds, battling to join our world and, simultaneously, to keep it out. After twenty-five years of being misunderstood, and unable to understand herself, Donna stumbled upon the word `autism`: a label, but one which held up a mirror and made sense of her life and struggles. Nobody Nowhere is now an international bestseller, sold in over 14 languages throughout the world. This is a book that will stay with you as one of the most exceptional works you will ever read.

Review: I am the grandparent of an autistic child and found this book so helpful I would recommend that it be made mandatory reading for all professionals who work with autistic persons. I would also strongly urge all others who have autistic persons in their lives to read it. The book has given me insight regarding my grandson's behavior and suggestions of ways to help him. Until experts and their research can provide explanations and perhaps cures for autism, the lived experience of an autistic person, such as Donna Williams provides in her books, is the best help available for those of us who care about and relate to an autistic person.— Linda M. Dean

Check the Autism Society's book store for these books and many more.

Autism Society of
North Carolina Bookstore
505 Oberlin Road, Suite 230
Raleigh, NC 27605-1345
Tel: 919-743-0204
1-800-442-2762 (NC only)
Fax: 919-743-0208

Monday, January 6, 2014

THANK YOU Frankie Lemmon School!

I just received a large box in the mail. Couldn't figure out what it was until I saw "Frankie Lemmon" on it. I opened it and discovered this large hand-made (and fired) ceramic candy dish and a note that said "Love from all of us." So, THANK YOU Frankie Lemmon School, from the bottom of my heart. I love you too!