The Dignity of Risk: Special Needs Lifeline Question of the Week

The Dignity of Risk: Special Needs Lifeline Question of the Week

i Aug 6th 1 Comment by

Once again, the summer Olympics is captivating audiences around the world. And once, again the quadrennial competition is entangled in controversy. We are all familiar with the routine failed drug tests, and accusations of corruption at the judges table. This year, however, we have witnessed a dispute unlike any other- the participation of Oscar Pistorious.

Oscar Pistorious was born with fibular hemimelia, the absence of the long leg bones. Before turning one, both of his legs were amputated below the knee. Yet in spite of the debilitating surgery, nobody could ever categorize Pistorious as disabled. He refused to be labeled, and he refused to be caught.

Oscar Pistorious is universally recognized as “the fastest man on no legs.”

In 2008, Pistorious tried unsuccessfully to represent South Africa (his home country) in the individual 400 meter race. A mere 0.7 seconds thwarted his attempt to qualify, and to subsequently become the first amputee to compete in the history of games. Correspondingly, Pistorious set multiple world records in the 2008 Summer Paralympics in Beijing, China.

Pistorious wears carbon-fiber prosthetics called “Cheetah Flex-Feet” Oscar’s desire to compete on the international stage prompted several rule changes, and compelled numerous experiments to determine if the artificial limbs imposed an unfair advantage over able-bodied sprinters. Every test indicated that Pistorious raced without any competitive edge, and he qualified on his own merit for the official 2012 games in London.

People with disabilities are often denied “the dignity of risk.” This signifies an attempt to discourage, albeit with the best of intentions, people with disabilities from striving to accomplish seemingly unrealistic goals. To never know if you could have succeeded because you were deprived of a chance to fail- that is the moral compromise personified by the dignity of risk.

Gold medals cannot adequately measure the extent of Pistorious’ accomplishments. His journey of self-discovery advances at every starting line. He has exercised his dignity of risk.

Question of the Week: What does “dignity of risk” mean to you? Can you think of other examples that demonstrate dignity of risk? Would it make sense to characterize Oscar Pistorious as disabled?

We encourage you to reply to the question of the week. Please be respectful of the opinions of our fellow community members. There is no right or wrong answer. Reflecting on challenging questions will help keep us informed.

Some Good News: Special Needs Lifeline Question of the Week

i Jul 29th 1 Comment by

Back in February, in a post entitled The Power of Nurturing, I mentioned how easily disability rights advocates can sink into pessimistic quicksand. Full-scale change does not materialize overnight; and gradual, incremental victories might not feel like victories at all. Until we take a deep breath, take a step back, and witness for ourselves the awe-inspiring transformation developing before our very eyes.

I want to share some good news with you. Follow me across the span of the United States from New York to California. I will introduce you to a little league superstar and the extraordinary mother of a quadriplegic son. Then we will journey over 7,000 miles to Kenya to meet a beneficent man raising funds and awareness for spinal cord injuries.

Evan Sussmann has participated in his local Brewster, NY little league for the past four years. He has fostered close friendships with his teammates, and he has earnestly attended every game. The fact that Evan has cerebral palsy is irrelevant to his baseball team. Unfortunately, league officials had considered that Evan would be a liability from his regular spot in the dugout, and they prohibited his appearance for a regional playoff game. Parents, coaches, and players quickly organized around Evan and explained the circumstances to league administrators. Consequently, Evan was there to support his team, prepared with a slew of high-fives and moral support.

Fourteen years ago, Patty Lance answered a phone call every parent dreads- her son had suffered a terrible accident and she needed to fly to California immediately. Geoff, Patty’s son, was knocked unconscious while he was surfing. He withstood severe cognitive brain damage, paralysis, and full cardiac arrest. From that moment forward, Patty accelerated on the road to her son’s recovery. She researched the foremost medical treatments and therapies. She committed herself to providing the optimal care for son, without abandoning her own identity while she continued her real-estate business. As Geoff grew stronger with each excruciating day, both physically and mentally, Patty’s resolve grew alongside him. Today, Geoff continues a prosperous, independent life. Patty and her son tightly embrace their faith- the belief that any obstacle can be overcome.

According to the website Disabled World, an estimated 60-80 million Africans (10% of the total population) live with a disability and approximately 20% of impoverished Africans are disabled. Those frightening statistics are no match for Zackary Kimotho, who has initiated an awareness raising 2,500 mile campaign from Nairobi to Cape Town. In a wheelchair. Zackary was the victim of an attempted carjacking in 2004, resulting in his becoming a paraplegic. His promising career as a veterinarian was abridged, and $3,000 were squandered on a witch doctor who promised Zack he would regain the ability to walk. In spite of the alternative remedy falling short, Zackary discovered a renewed purpose in life. Now, he is considered a hero by the residents of every village he arrives at en route to Cape Town.

Question of the Week: Help us spread some good news. Tell us about someone or something inspiring in your life. What instills good inside of you, and how do you try to instill that good in others?

We encourage you to reply to the question of the week. Please be respectful of the opinions of our fellow community members. There is no right or wrong answer. Reflecting on challenging questions will help keep us informed.

References

Dolan, J. (2012, July 26). Boy with cerebral palsy allowed to join baseball team in dugout. Abclocal.go.com.

Brenoff, A. (2012, July 4). Patty Lance: Realtor Turns Tragedy into Success. The Huffington Post.

Gettleman, J. (2012, June 29). On the Road, Cheers for a Kenyan and His Cause. The New York Times.

Champions of Change: Special Needs Lifeline Question of the Week

i May 14th No Comments by

Our world is changing rapidly. We are capable of achieving things today that were considered impossible forty or fifty years ago. Our inspiration is motivated in part by the global pursuit of STEM research and development. STEM stands for Science, Technology, Engineering, and Mathematics. In an effort to keep pace with our international competitors, United States education reformers have introduced STEM-based curriculums, and they have suggested providing incentives for schools that effectively integrate STEM into the academic culture. The White House has reinforced our national focus on STEM by honoring fourteen individuals from STEM industries who are leveling the playing field for people with disabilities.

The “Champions of Change” come from several different backgrounds. Some have disabilities themselves, and some do not. They are computer scientists, software engineers, civil rights activists, neuropsychologists, chemists, and education administrators. Their collective innovation is steadily improving the quality of life for the entire disabled community.

For me, the most important message delivered from the STEM champions is that we can all contribute to the creation of positive change. No idea is too small, no invention is worthless. An official decoration from the White House is certainly an extraordinary distinction, but your local efforts are equally worthy of national appreciation and gratitude.

Question of the Week: Do you know anybody who you would consider to be a “Champion of Change”? What did they do to inspire you? Can you think of ways that STEM provides equal access for people with disabilities where none existed before?

We encourage you to reply to the question of the week. Please be respectful of the opinions of our fellow community members. There is no right or wrong answer. Reflecting on challenging questions will help keep us informed.

College and Career Readiness: Special Needs Lifeline Question of the Week

i Apr 15th 2 Comments by

The issue of college and career readiness might appear far off in the distance for parents of young students with disabilities. After all, most parents are understandably preoccupied with more immediate concerns, things that involve more urgent readiness. Without a doubt, supporting the day-to-day affairs of a special needs child can demand an enormous amount of time and energy; but that time and energy should not be spent at the cost of minimizing a parent’s conviction for the future success of their child.

In February 2011, I had the great privilege of joining the National Down Syndrome Society (NDSS) in Washington, D.C. for the Buddy Walk on Washington. The NDSS invited disability activists from across the country to the nation’s capital for advocacy training, and the opportunity to meet with State Senators and Members of the House of Representatives to discuss our policy agenda. I paid close attention to the guest speakers and self-advocates who all made extremely compelling arguments for sponsorship of the Achieving a Better Life Experience (ABLE) Act. The ABLE Act intended to lift the cap on savings funds imposed for people with disabilities. The legislation was originally designed without any expectation for people with disabilities to work or pursue higher education. The ABLE Act was a rude awakening to a system established through the marginalization and discrimination of the special needs community.

It was at the Buddy Walk where I was introduced to the Mason LIFE (Learning into Future Environments) Program at George Mason University in collaboration with the university’s Helen A. Kellar Institute for Human disAbilities. The program accommodates young adults with intellectual and developmental disabilities who aspire to engage in the college experience. The program exemplifies the principles of full inclusion, and lays the foundation for valuable exploration of the workforce, academic life, social life, and self-exploration. Similar programs are forming at other universities.

Our national education standards are currently undergoing a transformation consistent with the guidelines of The Common Core. These standards reflect an effort from federal and state agencies to uniformly adopt certain goals for all students, including college and career readiness. There are serious implications to measuring all students along the same standards, which operates under the false assumption that all students belong to a homogeneous population. But anxious parents can be comforted to know that they have allies in organizations and institutes, like the ones mentioned above, that believe in and promote the premise that everyone deserves the right to work and the right to pursue a formal education.

Question of the Week: Are you aware of any other programs like the Buddy Walk, or Mason LIFE, which empower people with disabilities to fight for equal access? What about programs that do just the opposite? How would you define college and career readiness? Should it be a phrase that can apply to every student or should it only be relevant for certain students?

We encourage you to reply to the question of the week. Please be respectful of the opinions of our fellow community members. There is no right or wrong answer. Reflecting on challenging questions will help keep us informed.

From a special needs carnival event volunteer

i Sep 28th 1 Comment by

“We need help here!” Voices were coming from each corner of Willowbrook Park, Staten Island, New York. Volunteers were calling out to each other to help the best they could. The Special Needs Lifeline (SNLC) recreational outreach event had finally arrived. The carnival had many guests and volunteers. The outcome exceeded everyone’s expectation. It was the first time SNLC hosted a recreational event for the special needs children and we received a lot of positive feedback. Our objective was to have fun and create a carnival-like festival for the special needs children and young adults. We all had a good time.

Special Needs Lifeline hosted a recreational outreach event on September 10th, 2011. This gave special needs children, young adults and their families an opportunity to enjoy a day together. Through our community, we heard the need for recreational events to bring the special needs community together. We had many ideas, and began to plan different programs that might interest those with disabilities. With our passion, we started to think “Art, Music, Entertainment and Sport Programs.” It was not an easy task for us. We began to gather information on potential sponsors and vendors. Within a short time-line and with a rigorous deadline, we had weekly meetings, and daily emails, text messages, and conference calls with each other. Through the help of our friends and family members this event was a success. We worked together as a team, and as a unit took a leadership initiative approach. All contributed and helped SNLC plan the event in many ways. YES! We Did It! The outcome was amazing.

If you joined us that day, we really enjoyed sharing the day with you. If you could not make it that day, there will be many more events in the future…We look forward to seeing you then.

If you have any suggestions for future events, leave your comment below, we would love to hear from you.

Pyi Kyaw

Born with Hydrocephalus, Now a Well Known Author

i Jun 29th No Comments by

Experts estimate that hydrocephalus affects approximately 1 in every 500 children worldwide. Another 6,000 children annually develop hydrocephalus during the first two years of life. 70-90% of children born with spina bifida also develop hydrocephalus. From the Greek word “hydro” meaning water and “cephalus” meaning head, hydrocephalus is a condition that has excessive accumulation of fluid on the brain. Hydrocephalus may result from inherited genetic abnormalities or developmental disorders. Other causes include complications of premature birth, diseases such as meningitis, tumors, or traumatic head injury. Effects of this condition may include problems with decision-making, logical thinking, and organization. Furthermore, inability to follow verbal instructions, short-term memory and passive behavior effect those who have this condition. How does one move forward with their life? Can an individual have a normal life and live to the fullest?

Sherman Alexie is a man who was born with hydrocephalic and at six months underwent a brain operation from which he was not expected to survive. He did more than that and we would like to share with you his story.

Sherman Alexie was born on October 7th 1966 in the Spokeane Indian Reservation in Wellpinit, Washington. Sherman spent his first seven years of life in and out of hospitals with seizures. Despite the resulting seizures from his condition, Sherman turned out to be an advanced reader at the age of five. “I’m a success story,” Alexie says. He made a conscious decision to leave his Native American reservation and attend Reardan High School in Washington where he knew he would receive a better education. As the only Native American attending this High School, he became the top student and a star basketball player. Upon graduation in 1985, Alexie attended Gonzaga University on scholarship from which he transferred to Washington State University after two years to study pre-med. As a Pre-Med student, Alexie decided to change his major once he had fainting spells in anatomy class.

As Alexie gradually became stronger and was able to advance in life he graduated with a bachelors degree in American Studies and received the Washington State Arts Commission Poetry Fellowship and the National Endowment for the Arts Poetry Fellowship. Furthermore, in 2005 he became a founding Board Member of a non-profit organization that is committed to teaching filmmaking skills to Native American youth, and use media for cultural expression and social change. Alexie supports youth programs and is very dedicated to uplifting the youth.

As Alexie had been inspired to become the top student in his class and advance his education, he also created meaning in his life and lived to the fullest. His commitment and dedication to the youth has inspired SNLC and we hope it does the same for the special needs community. As we are inspired by Alexie, let us share and reach out to one another to help, to grown and to strengthen and connect with each other. Are you pursuing your dreams and advancing in life? Is your disability taking over your life or are you achieving progress despite your disability? What can you share to contribute? Reply now with your thoughts, whether big or small…

Anthony’s update

i May 2nd 1 Comment by

Anthony just completed his visit to the orthopedist surgeon last week. His casts were removed and his legs and feet have more flexibility. We are told by the surgeon that he needs heavy Physical Therapy and Occupational Therapy working on range of motion, stretching, standing and walking. It is to my surprise that I saw my son Anthony stand holding onto the table for the first time this weekend. I helped him get into the position and he was able to weight bare on his legs himself while leaning on the table. This is amazing progress for my son. He is very motivated and I will never give up pushing him and helping him. I believe in him and I know he will reach his goal to walk. Thank you to all the doctors, therapists, family and friends that participate in our lives. I know if we all continue to work together anything is possible.

Gifts for a special needs child

i Dec 21st 1 Comment by

The holidays are approaching quickly. Shopping for a child with disabilities is unique to all who have special needs children. Please share your experiences and how you handle your holidays.
Best always,
Camille

When putting together my holiday list for my son (who has multiple disabilities) I always try to think of gifts that are practical and educational. Toys R Us has a catalog that contains toys that are geared toward the special needes population. It is called Toys R Us Differently Abled Guide. These toys can help with fine motor, gross motor, auditory, tactitile, visual language, thinking, and creativity. For instance I have chosen the TAG Pen, Crayola Art Sets, Leapster
Explorer and Leapster Videos. Hope this was helpful.
Happy Holidays,
Lori

A successful adult shares his special needs childhood story

i Nov 22nd 1 Comment by

We look forward to hearing your special needs story. We sincerely would like to help by connecting you with others who share your very unique lifestyle. Read Karim’s story. As a successful adult, he shares his story taking you through his experience as a special needs child.
Camille

Hello everyone! My name is Karim Motani. Currently I am an employee with a large pharmaceutical company and gaining my graduate degree from NYU. I was introduced to Special Needs Lifeline by one of my classmates from NYU. Camille and I took a graduate course together and she was so passionate about this newly formed website. I am very supportive of what this enterprise is doing and where it is going. I am sure everyone is wondering why? Well I have to say I am an individual with a learning disability. My diagnosis was the following: I took 2x as long to process anything that was happening around me. I took twice the time to process everything before I could answer a questions or anything on that note. Furthermore my reading, speaking and writing level was 2 or 3 levels below for my age and my attention span was much shorter than an average student. I even had a speech problem where I went to speech therapy 2x a week.

Before I was ever diagnosed with my learning disability and without the support I needed I had such a difficult time in school and my surroundings. It was extremely difficult for my parents as well. Just to brief you on my parents and my background, I come from a South Asian family and education is the number one priority in life. South Asian families want to see their children to become Doctors, Lawyers etc. When my parents saw I was not living up to their expectations they got worried and kept pushing me but I just got discouraged.

So I can say it all began when I was in kindergarten. Now everyone was confused because I was American born and they all assumed I would be able to speak English without any problems. My teachers in pre-school and kindergarten strongly recommended my parents to speak English around me so I could pick up the language quickly. My parents did everything they can to help. I was just a slow in learning. They kept me back in kindergarten which really put me behind in my education. As for my parents they were upset because they had the mentality of a typical south Asian as to where “how can my kid be so dumb. We now need to push him harder to get him back into his grade level. “ They did everything from private tutor to Kuman. It really discouraged me as I was just being pushed too much. During my elementary years I was really pushed by my mom. After school she sat down with me until I finished my homework, quizzed me on every little thing and made me go to Kuman three times a week. No one really understood why the material was hard for me. I was not doing poorly in school but I was not meeting my parent’s expectations especially when my two older sister were straight A students. I kept rebelling but my parents kept forcing really strongly.

As I was in middle school – the transition from elementary to middle school was a big change. It took me much longer than anyone else to adjust. To this point the school administration tested me and diagnosed that I was a student of a learning disability. My family was confused. They did not know what they did wrong. The administration team explained this is normal and they would work extra hard to keep me on the same level. So immediately the school placed me in the lowest grade level possible. I was insulted. I felt like an outsider. I had to hide from my friends so they would not see which class I was going into. In 7th grade I started to get bored in class and my teacher noticed something was wrong. We spoke and I told her I do not belong in these classes. She agreed but the administration refused because my state exam scores were lower than any other 7th grader and said I was not ready. This particular teacher felt bad so she took the mainstream curriculum and taught it to me in class. She saw a drastic improvement and noticed I just need additional time and additional attention to keep up with my grade level. In 8th grade she asked the administration if I can do a trail semester. After succeeding I moved into the mainstream inclusion class which has a 2nd teacher who walks around and helps those who needs it. I was finally happy and my grades improved dramatically. In fact since the 8th grade state exam determines what level classes you take in high school, my grades well over the average scores and everyone was pleases. I was placed in all mainstream classes that have an inclusion teacher.

In High school, the administrators kept on diagnosing me and kept giving me speech therapy. Nothing really changed but I kept on fighting and began taking more challenging courses. I really wanted to take a language but of course everyone said no. I rebelled and took Spanish. Not only did I get an A in the class I went on and took Spanish two. Everyone was shocked to see a drastic improvement. Throughout my time in high School I moved up to all level one classes – without any inclusion teachers. I even took a college course during my senior year. My GPA was 3.5 and I, along with my parents, was really pleased about how well my improvement went. I said to myself, I have this learning disability and it will not go away. I will have it forever. I can mope around and stay in the lowest class possible or I can work really hard and show everyone i am intelligent and follow my dreams. I worked hard, graduated and went off to college. It felt so good.
I went on to college – still got the accommodations I needed – extra time on exams and other types of assistance – such as a note taker. I graduated college with a BS degree in Management and a minor in Accounting. I began my career as a financial analyst in the summer of 06, continued my accounting credentials and got an auditing job November of 07. I was an internal auditor for two years. I began my master program in the spring of 2010 and began a new career as an operational auditor for compliance also in January 2010. I have to say – I really benefited from everyone’s support and assistance especially from my parents.

Even though I have this learning disability I will not let this hold me back. I will do everything to block it out and accomplish my goals. I have to say it was great to have great support especially from family and friends. If anyone has any questions or need any advice please feel free to contact me through karim@specialneedslifeline.com .

As school begins – special needs

i Sep 8th 1 Comment by

The start of school is always hectic no matter how prepared you are. I just received Anthony’s bus schedule. I have no idea who his bus para, classroom para or teacher is at school . I probably will have the information the day before school and the first day of school. There are some of the things I can control and prepare before school starts. I start to put Anthony to sleep earlier at least 4 days before school starts to get him adjusted to getting up early. I get general school supplies, a book bag and try to go food shopping to get all his snacks and meals ready for the start of a new year. I am less anxious because he has been in this school for 2 years so most of the staff knows him and his medical history. If your child is starting a new program I suggest to write a profile of your childs medical conditions, allergies, likes and dislikes. This helps the staff get a better picture of your child. Also, a notebook to write in each day to your school room teacher keeps you updated on the daily events of the day is helpful. I hope these tips help. ENJOY YOUR FIRST DAY OF SCHOOL.