Letter to the late Eunice Kennedy Shriver

Dear Mrs. Shriver,

I am aware that this letter is a little late, failing to reach you before you left this earthly plane; but hearing of your death, I felt compelled to write despite the fact that you are not able to physically respond.

After reading many of the articles about your life, I have to admit you were quite a visionary.  At a time in history when people acted ashamed of the fact that their child exhibited fewer abilities than the norm, you choose instead to celebrate the abilities those children did have.

You recognized the hero lying dormant within these innocent children and ignited the spark of self-empowerment.  You built a platform to celebrate their individual accomplishments not by the standards of a particular sport, but by the struggles overcome to even compete.

Your brother Jack was thought to have embodied the Camelot myth – a king among his knights in a land that knows no limits.  Perhaps you embodied a much simpler story through your life’s work, “The Little Engine That Could.”  It takes only a minute or so to read the entire book, but I have learned to believe in its powerful mantra … “I  think I can!”

Eunice, you knew not everyone is born a king.  But despite the lot life deals us, we can often accomplish more than others or we ourselves believe.  The core message of the book is two engines join forces against a formidable obstacle and simply decide that “they can” master it. 

In the lives of so many children with special needs, you were the second engine, the one who introduced the concept that “they could.”  On behalf of all of us here at AblePlay and the National Lekotek Center, we want to say thank you for starting the movement we play a humble role in today … helping children with disabilities get over the next hill.  Thank you.  

“I-think-I-can! I-think-I-can! I-think-I-can! I-think-I-can! I-think-I-can! I-think-I-can! I think I can – I think I can – I think I can I think I can–”

Global Perspectives on People with Disabilities

by guest blogger Thuli Katerere

I’ve been writing about the ways in which our system in the US has a long way to go in terms of providing the best care for those with disabilities. I thought a look at some of the obstacles members of the disabilities community deal with around the world would provide yet another perspective.

The general consensus; the policies of the U.S. regarding people with disabilities are a major improvement compared to that of a great number of other countries.  In many parts of Africa, Latin America, and India, people with disabilities face challenges related to abject poverty, lack of education, lack of government support, and discriminatory cultural beliefs.

In rural parts of Africa, a child born with a disability may be viewed as a sign of bad luck or a punishment from the gods.  These children grow up to be isolated from society, deprived of proper health care, and under educated.  Any chance of their ever being valuable members of society are smashed by their inability to provide for themselves, as the cyclical nature of the poverty continues.  Furthermore, the prevalence of armed conflict in many African nations continues to keep the number of disabled persons steadily increasing. 

Neglect and isolation keep the disabled communities of Latin America from reaching their full potential.  Those with disabilities are not visible members of society as they are viewed as a shameful and unspeakable mark on a family. A string of fires in Chilean mental institutions recently spurred a closer look into the lives of Latin Americans with disabilities.  Approximately half of the children and adults in Chilean mental institutions and special care homes do not receive any visitors as their families have essentially dumped their children into the laps of these underfunded and overcrowded institutions.

In India, during the latest solar eclipse, claims were made that children with disabilities were buried up to their chins in the belief that the practice would rid the child of his/her disorder.  Important aspects of Hindi culture, such as the dowry paid for a daughter in marriage, are highly affected by a girl child having a disability. The dowry is often much lower for her, and these girls are often left with the only option of marrying a much older man; resulting in a high number of widows with special needs and no means of sustenance.      

Internationally, it is not all bad news for those with disabilities.  Several American families are actually immigrating to Switzerland in hopes of benefitting from the exceptional social welfare system and relatively low individual cost.  In Switzerland, the government provides the education and health care for the disabled, and will continue to care for the person with disabilities long after their family is deceased.  Jordan too is a nation leading the way for disabilities rights by being the first nation in the region to set forth legislation to secure and protect the rights of people with disabilities.  By being a generally accessible tourist destination and making disabilities issues a priority in policy-making, Jordan became the first Arab nation to receive the Franklin Delano Roosevelt International Disability Award.

So, sure, American services for people with disabilities leave a lot to be desired, but overall we’re a nation that believes in equality, acceptance of all, and offering help to those who can’t necessarily help themselves.  Other nations have much larger obstacles to overcome in the continued effort to ensure equal rights for the global disabled community.

Public v. Private School – Tough Choices

by guest blogger Thuli Katerere

In Forest Grove School District v. T.A, the Supreme Court ruled that in accordance with the Individuals with Disabilities Education Act, (IDEA), parents of children with disabilities are entitled to reimbursement for the cost of private school if their public school cannot offer an adequate Individualized Education Plan, (IEP).  The IDEA guarantees free, appropriate public education for all children with disabilities.

Considering I am not a parent, nor have I ever been the main care-giver for a child with special needs, my opinions and insights are of course, only mere speculation.  It is impossible for me to know exactly the difficulties families face in acquiring the best care and education for their children and their struggles as advocates in a world of inequality. It would seem, though, that the best solution would be for public schools to make a concerted effort to have the adequate facilities, programs, and personnel to educate children with special needs. The parents involved in suits like this have attempted to send their children to public schools, but have found them lacking. Does it make more sense to invest funds before legally dictated reimbursements become necessary?

The process of approval for a reimbursement is hardly easy.  The law stipulates that many conditions be met before a family is eligible, including filing a request before enrollment into the private school.  And requests for reimbursement are not always approved; making the legal route of acquiring the best education for a child a monumental struggle.  Like these families need more work! 

Some parents believe that their children would face difficulties in a public school environment, and so a private or school for special needs becomes their first option.  But the parents who feel inclusion is better for their child deserve to have access to a quality education without taking legal measures.  Although several children will surely benefit from the Supreme Court’s ruling, the larger issue remains.  Because of the flawed nature of our current system these children have to battle even for their education.

Should Obesity Be Removed from the ADA?

by guest blogger Thuli Katerere

The issue of obesity is one causing great concern around the world as a potential pandemic, but more specifically, in the United States.  An approximate one-third of all Americans are diagnosed with obesity.  In a time when President Obama is looking to reform health care and the costs of these changes are a hot topic, new ways are being discussed as to how to best cut restructuring costs and alleviate the compounding health problems of the American people. 

One of the suggestions on the table is the removal of obesity from the Americans with Disabilities Act so possible incentives might be applied to obese Americans who lose weight; and adversely, penalties might be applied to obese Americans who fail to do so. Currently, discrimination or unequal treatment of any persons diagnosed with any of the ailments listed on the ADA, obesity included, is prohibited by law. 

Some politicians are debating that obesity be removed from the ADA and incentives be instated; while others would like to find a way to keep obesity as part of the ADA while still launching a weight-loss incentive program.  Of course, one must remember that for some suffering from obesity, the condition is not preventable and their obesity stems from genetic, psychological, or physical conditions.  Loosing those rights under the ADA would prove a huge detriment to their lives. 

But considering sedentary lifestyle and exorbitant calorific intake are the most common causes of obesity in America, one can definitively say that the issue of obesity must be addressed urgently and efficiently.  My hope is that the resolution neither deprives people with disabilities of their rights nor facilitates a culture of unhealthiness.

Illinois Budget Cuts Hurts Kids

In Illinois, two million individuals with disabilities strive every day to overcome their physical, sensory or mental challenges in order to live independently and productively, as well as to participate fully in the affairs of their community. 

On June 12th, 2009 Anixter Center (as well as many other human service providers) was notified that funding for human service programs was being eliminated or drastically reduced.  Under this proposal, all of the Lekotek services to children with disabilities and their families will be lost.

The proposed draconian budget cuts will further deprive people with disabilities of crucial state-funded services. Illinois continues to regress in the rehabilitation field. Already underfunded, community providers in Illinois are on the brink of implosion and one of the hardest hit segments would be the family services to children from birth to eight years. 
 
This doomsday budget would seriously impact children with disabilities in Illinois.

If you are a resident of Illinois … and want to help children with disabilities …

I URGE YOU TO TAKE THREE MINUTES NOW TO MAKE ONE MORE CALL TO YOUR STATE REPRESENTATIVE AND TO ENCOURAGE AT LEAST THREE FRIENDS, FAMILY, NEIGHBORS AND COLLEAGUES ALSO TO CALL!
 
The message is simple.
 
1.     Vote “No” on SB 1197 and any bill that cuts Community DD, MH and SA services.
 
2.     Vote “Yes” on HB 174.
 
3.     Support Survival Provisions for Community DD, MH and SA services.
 
4. Tell your Representative if they must Stand Up for HB 174 providing critical services to children with special needs and the entire community of people with disabilities.

Simply use our
downloadable template.

Contact information for your legislators can be found at:

http://www.votesmart.org/ (Senate & House)
http://www.ilga.gov/senate/ (Senate)
http://www.ilga.gov/house/ (House of Representatives)

RALLIES
 
THURSDAY JUNE 18TH:
Thompson Center – 100 W. Randolph, Chicago, IL
11:30am to 1:00pm.
We’re planning to meet at the corner of Lake & Clark at 11am on Thursday to meet other staff, clients and families from surrounding Lekotek Centers. We will have some signs etc., for you to carry, but we’re encouraging everyone to make their own signs and posters as well.
 
On the same day, THURSDAY JUNE 18TH:
ANIXTER CENTER is planning A RALLY AT 2032 CLYBOURN
From: 8:30AM TO 4PM
Join us anytime during the day to hold signs and pass out literature
 
MONDAY JUNE 22ND
Thompson Center , 100 W. Randolph, Chicago, IL
Starting at 11:00am.
Look for Anixter/Lekotek Signs

Buying the Right Toys for Special Needs Now Fast, Fun and Smart

We want finding toys for children with special needs online to be as much fun as the toys themselves.  That’s why the AblePlay website continues to improve and react to the needs of parents, professionals and families of children with special needs with our newly revamped website at www.ableplay.org.  All our play products are researched, rated and ready to buy.

It’s not just a fun face lift, we’ve also made searching easier, faster and provided you with the best reviews on current toys and play products.  Add to that an exciting, easy, eye-appealing new format.  Oh and pay special attention to our NEW Wish List capabilities.  Finally your family, friends and others can purchase current toys right for your child’s individual abilities — and assist with their developmental goals as well.  That’s not only fun, but smart.

Put a little fun back in your and your child’s life.  Visit the NEW AblePlay website and see what’s hot, cool and smart this summer (and don’t forget to bookmark it, we’re adding new play products all the time).

Chicago report card on disabilities mixed

Working within the field of disabilities, I was proud when Chicago became an Accessible America Award winner by offering a wide range of fun and accessible experiences for families and children with disabilities.  Physical disabilities are in some ways easy to understand, recognize and relate to.

But recognizing and relating to mental or less apparent disabilities can pose a whole new set of challenges.  So I was once again proud to learn that the Chicago Police Department was conducting the first ever Autism Safety Awareness night with Easter Seals on Monday, April 20th and had distributed a training memo to all sworn personnel on autism and the recommended police responses.

That was before the news waves bristled on April 22nd revealing that a 16 year old boy with autism was allegedly struck and injured by an officer amid his family’s pleas that he was a “special boy.”  It appears that as the police were trying to question the young boy, he reacted in a way that triggered an aggressive response from the officers.

I don’t like stories like this because they leave me conflicted.  Working for the National Lekotek Center has sensitized me to how truly “special” all children with disabilities are and how much needs to be done to help their young spirits successfully navigate the world

But I was also raised as the daughter of a Chicago cop and I know a little about the incredible stress, danger, fear and courage it takes to step up to those words painted on the side of a squad car, “We Serve and Protect.”

My ending thoughts are that the Chicago Police must continue those training efforts.  Perhaps the publicity that this young boy and his family have stirred can open up some eyes and minds.  “We Serve and Protect,” is a wonderful motto for the Chicago Police Department.  It’s a lot to live up to.  Perhaps we all must play a role in extending that commitment to those who need it so desperately.

World Autism Day reveals Awesome Parents

April 2nd was World Autism Day and the more I read about it, the more I realized how this condition penetrates the entire family.  Dealing with a child with autism is potentially one of the most difficult challenges anyone could face. 

There are so many aspects that parents must deal with on so many levels.   We are still struggling with understanding the cause, crafting treatments and creating opportunities for these children to learn and grow and develop to their full potential.

But what strikes me most is the commitment, trials and unbelievable courage of so many parents.  I thought I was a pretty good Mom, but I am humbled by the stories these parents tell.

AblePlay salutes these parents, each and every one for both meeting the challenges of caring for a child with autism and for surviving the gut wrenching emotional battles they wage in their homes, at schools and navigating through the mostly “unaware” world.

I encourage you to read these remarkable stories that take parenting to a new level of devotion and advocacy.

Thanks to these parents for sharing, by doing so they serve us all.  For them I will use a word I think is overused but in this case I feel it is more than  appropriate — Awesome!

Autism parents’ plea:  Understand …

Acceptance issues with autistic children

A Rain Man Moment

Life with Gaby

Discover the Joys of Reading Aloud

They say the downturn in our economy might bring people back to simpler times.  According to the news, people are abandoning some of their more expensive entertainment choices like dinners out and distant vacations for recreational options closer to home and not as expensive. 

A recent Nielsen Study showed that people are watching more TV than last year. I feel there is another option — an old fashioned one that everyone can afford — reading aloud.

The benefits to young children are far reaching and range from the bonding experience to the introduction of language. At a time when children’s concentration seems to be going down, teaching a child to sit and hear a story is a great place to start.  I could go on and on about all the developmental benefits, and they are impressive.  What I love about the act of sitting next to your child and reading to them is that you are focusing directly on them.  Through this simple act, parents not only give their children attention, but affection as well — two elements that help children thrive.  Plus you are also giving them a story to remember and reference in their lives.  You never know when these same stories will bubble up during difficult times and help your child both strive and survive.  

A great promoter of reading aloud from Australia, Mem Fox, even has some great suggestions on how to start.

Enjoy and be glad there are experiences everyone with a library card can afford.

Change of Plans — Having a child with a Disability

A National Lekotek leader named Peggy McWilliams shared with me a poem she read at the memorial services of one of the children she worked with. It was written by the mother of a child with disabilities. It was the author’s goal to help others to imagine what it would be like to have a child with disabilities of your own, and to shed a light of understanding on the uniqueness of that situation.  Some of you may have seen this before, but even then, it’s worth repeating. 

Welcome to Holland
by Emily Perl Kingsley

It’s like this… When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes and says, “Welcome to Holland.” “Holland?” you say. “What do you mean Holland? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is that they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine and disease. It’s just a different place.

So you go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills. Holland has tulips, and Holland even has Rembrandts. But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there.

And for the rest of your life, you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.” The pain of that will never go away, because the loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn’t get to Italy, you will never be free to enjoy the very special, very lovely things about Holland.