Posts Tagged ‘Special Needs’

Rare Diseases !

Sunday, March 13th, 2011

Fourth International Rare Disease Day – “Rare but Equal” 

www.rarediseaseday.org 

February 28 th, 2011, was Rare Disease Day. All over the world, rare disease patient organizations and their partners are joining forces to create awareness of rare diseases and the millions of people affected by them.  
Rare diseases are life-threatening or chronically debilitating diseases. Due to the low prevalence of each disease, medical experts are rare, knowledge is scarce, care offering inadequate, and research limited. Very few cures exist. While the diseases are rare, collectively they affect more than 60 million people in Europe and the US alone. Despite their great overall number, rare disease patients are the orphans of health systems, often denied diagnosis, treatment and the benefits of research. 

 

To help raise awareness, the international Rare Disease Day campaign was initiated by the European Organisation for Rare Diseases (EURORDIS) in 2008, and since has been annually organized on the last day of February by EURORDIS, in conjunction with 25 rare disease national alliances, together representing over 1,000 patient groups. 
This year’s focus is on health inequalities. “Most rare disease patients spend years wandering through the maze of health systems to find an accurate diagnosis. Many are fighting to obtain life-saving treatments or to be reimbursed by their health authorities. Others are denied access to specialised services and to disability compensation. They have further difficulties finding a job, getting into school, obtaining a loan or accessing life insurance,” says EURORDIS’ Chief Executive Officer Yann Le Cam.  
To further the objective of equal care for rare disease patients, EURORDIS has organized a one-day conference in Brussels in partnership with the European Commission, addressing the issue of health inequalities and discussing mitigating measures. Ms. Antonyia Parvanova, MEP and shadow rapporteur on the new EU Directive on Cross-Border HealthCare and Patient Mobility, will participate in the Conference. The programme will spotlight examples of inequalities, such as the absence of widespread neonatal screening in Romania for phenylketonuria, a rare disease that is systematically screened for in most of Europe; the disparities in life expectancy for cystic fibrosis patients between European countries; the unequal access to new therapeutic approaches for rare cancer patients leading to variations in survival rates across Europe. 

 

Today marks the fourth international Rare Disease Day coordinated by EURORDIS, 
together with rare disease national alliances and patient groups from more than 40 countries worldwide. Awareness-raising activities are being planned across Europe, USA, China, Japan, Colombia, Burkina Faso, Australia, India and many other countries across the globe. 

For more information: 

More information about Rare Disease Day and the events planned in participating countries can be found at  

 

The European Union considers a disease as rare when it affects fewer than 1 in 2,000 citizens. 80% of rare diseases have a genetic origin. 5,000–7,000 rare diseases have been identified to date, affecting 30 million Europeans today

Puberty for special needs children. where can I find information on it?

Tuesday, January 25th, 2011

 

Best Answer – Chosen by Voters

There is a few really good web sites, that deal with teaching teens with disabilities about puberty.

Teach the child/teen the correct anatomical names for the body parts. What is appropriate touching and what is not. Respecting other peoples right to not be touched, and vice versa. What & how sanitary products are used. The importance for using protection and STD’s. Pictures maybe useful to help with understanding what your try to teach. Obviously the information you give will depend on their age and their ability to understand what your trying to teach them, and in simplistic terms.

Contact disability services and ask if they have any recommendations for books or brochures they have to help you. Some schools may also have some information too, for that matter your child’s pediatrician should be able to give you information too.

http://www.sexualityandu.ca/teachers/too…
http://www.betterhealth.vic.gov.au/bhcv2…
http://www.bellaonline.com/articles/art4…

Source(s):

Youth & Disability support worker
Books which maybe helpful
Teaching Children with Down Syndrome about Their Bodies, Boundaries, and Sexuality, by;Terri Couwenhoven, M.S.
Sex education for the developmentally disabled; a guide for parents, teachers, and professionals
by Henry L. Fischer
http://uscm.med.sc.edu/CDR/sexualeducati…
  • 1 year ago

taken from website; yahoo.com

Meeting My Special Needs!

Tuesday, January 11th, 2011

When I began my daycare business 12 years ago, I didn’t think about ever having children with special needs. But now I wonder how empty all of our lives would be without Sydney and Darby. They have filled my special needs by giving me a loving hand, a willing spirit, and a thankful heart.

Sydney came to us four years ago with mild to moderate spastic diplegia. As a newly diagnosed 14-month-old, we had only a few instructions on what she needed to work on to develop her muscles. Since then she’s had botox shots in both legs, and more recently, a rhizotomy. Sydney’s physical therapist, Sharon, comes to the daycare once a week so I can learn what Sydney needs to work on. We have fun making the tasks into games or contests. Now that Sydney is 5, it’s easy to motivate her by simply telling her that an exercise will help her toward her goal: walking independently

Darby is now 4 and has mild autism. She came to us via a referral from Sydney’s mom. She has hypotonia and is developmentally delayed. It’s been a thrill to see her develop her language skills in the three years that she’s been here. Her social skills are a little slower coming, but with the therapy she receives at the preschool, she’s growing into a little socialite! She loves the other kids here and knows each child by name. She’s learned to play more gently with the others and can now color a page without getting frustrated by the task.

Both girls need some special considerations to accommodate their special needs, but among my goals with every child is to prepare them for school, where they will be expected to be fairly self-sufficient, social, and disciplined. Most important, I want them to know that they are loved for who they are, not for what they can or cannot do.

The highlight of any day with my special needs kids is watching the other kids interact with them. Because the older ones have known both girls for so long, they don’t seem to notice that they are what the world might call “different.” They accept Sydney’s walker as a necessary extension of her and bring it to her without being prompted. They know to be patient with Darby and kindly tell her not to “hit, just pat” the other kids. Both of the girls will work extra hard if they know that the other kids are watching and cheering them on. They are accepted for who they are, without prejudice. That lesson will stay with all of them for life.

When daycare providers turn down families with special needs kids, I believe it is out of a lack of experience working with special needs kids. Many people focus too much on the disability and not enough on the child. However, if you are a daycare provider and you can’t see the child first, and love that child, then turn down the family! Children should be with people who want to care for them in a loving environment.

Darby and Sydney have taught me and our daycare family that everyone, and no one, has a disability.We ar all just a little bit different from one another, and I guess that means each of us has a “special need”!

Submitted by Patty Strother

From the website: www.cerebralpasy.org

All it takes is one Person!

Friday, August 13th, 2010

 

Eunice-Kennedy-Shri_650642t

 

I AM honoured to see every day how Eunice Kennedy Shriver’s work continues to transform the lives of millions of people with intellectual disabilities, and their families.

This week last year the world lost a remarkable woman and a dear friend of Ireland in Eunice.

On the first anniversary of her passing tomorrow, it is fitting to honour her and to celebrate her lasting legacy.

Deeply inspired by the struggle of her own sister Rosemary, she set out 42 years ago with one vision: a world in which people with intellectual disabilities are fully integrated into society.

The Special Olympics has grown from that day to what it is today — a global movement of 3.5 million athletes in over 170 countries in all regions of the world dedicated to promoting respect, acceptance, inclusion and human dignity for people with intellectual disabilities through sport. In Europe/Eurasia, there are 500,000 athletes across 58 countries.

Her passion for the Special Olympics movement she founded is one that happily coincided with her great love for Ireland.

It was here in 2003 that the world games were first held outside the United States. It was a great gift to Ireland and seven years on the effect of those games on the nation is still fresh in our hearts and minds.

Through the common and simple vehicle of sport, Special Olympics is helping to bring about attitudinal change in the way people with intellectual disabilities view themselves and are viewed and treated by others, replacing misunderstanding and fear with respect, acceptance and inclusion.

Communities, sponsors, volunteers, coaches, spectators, journalists and all those who have been embraced by Special Olympics athletes find that the experience opens their eyes and minds and changes their lives forever.

Eunice Kennedy Shriver leaves this profound and lasting legacy on the world. Not only has Special Olympics changed millions of lives but it has a real impact beyond sport, helping shape public policy and effect social change.

I know I speak for everyone at Special Olympics Europe/ Eurasia when I say we are committed to working tirelessly to continue her work and to bring her powerful vision to life; to change the lives of people with intellectual disabilities, using sport as the catalyst for respect, acceptance and inclusion.

This year is an exciting one for Special Olympics. Next month, we will celebrate the 2010 Special Olympics European Games in Warsaw, Poland, and in June 2011 we will celebrate the 2011 Special Olympics World Summer Games in Greece.

Both events will provide strong platforms to raise awareness of our movement and showcase the abilities and spirit of our athletes. Eunice Kennedy Shriver was a frequent visitor to games and competitions in Europe/Eurasia, inspiring us all with her energy, her unfailing commitment and, above all, her enormous love for the athletes.

While the World Summer Games take place every four years and the European/ Regional Games take place every two years, it is important to be aware that Special Olympics happens every day with more than 30,000 competitions taking place year round in communities worldwide.

I believe the world right now is hungry for what we have at Special Olympics.

Everywhere you look, people are hungry for authenticity. There is a crisis in trust everywhere. People are asking: how can I make a difference and feel a part of something bigger?

At Special Olympics we are uniters. Our athlete, family and volunteer stories inspire, entertain, energise, change attitudes and break down barriers to inclusion and friendships.

Corporations sponsor Special Olympics because they share our brand values and our programmes touch so many people so positively.

Funding is always an issue for us and we continually seek new corporate partnerships to support our mission and continue Eunice Kennedy Shriver’s vision.

Last year the European Commission made an unprecedented commitment to Special Olympics Europe/Eurasia by granting €6m .

This much-needed funding allowed us to empower, through sports, more and more people with intellectual disabilities across Europe, while also changing attitudes and creating a more inclusive and accepting world for all of us.

Eunice Kennedy Shriver devoted her life to fighting for the rights of those with intellectual disabilities. She opened her home, she coached and above all, she was a friend. She demonstrated an indomitable spirit in action.

The first ever Eunice Kennedy Shriver Day (EKS Day) will take place on September 25 this year. Hundreds of events will happen around the world, including Ireland, to celebrate her life and impact and to encourage new fans of Special Olympics.

The Shriver family hopes EKS Day will become an annual event across the globe. To quote Tim Shriver, CEO of Special Olympics International and son of Eunice: “I cannot think of a more fitting way to celebrate my mother’s life and legacy than to encourage acts of volunteerism that will teach people to see their peers with intellectual disabilities as classmates, teammates, colleagues, friends and most importantly, as equals. Ultimately, I hope that this day will put us one step closer to the world she envisioned.”

Eunice Kennedy Shriver was an outstanding leader in the worldwide struggle to improve and enhance the lives of people with intellectual disability.

Tomorrow, I ask you to remember this remarkable woman on the first anniversary of her death and embrace the Special Olympics movement she founded so that every person with intellectual disabilities is accepted and included in society without fail.

Mary Davis is managing director of Special Olympics Europe/Eurasia

– Mary Davis

Irish Independent 10th August 2010

Albert Einstein had a learning disability!

Sunday, August 8th, 2010

Many people who have a disability don’t let it prevent them from leading full and rich lives, indeed some are an inspiration to both disabled and non-disabled people alike. Below is a list of disabled people who have achieved outstanding success despite their disability.

1. Stephen Hawking is probably one of the world’s best known high achievers with a disability. He is an internationally renowned physicist / mathematician who suffers from Motor Neurone Disease. At 35 he was Cambridge’s first Gravitational Physics Professor and received the Lucasian Professor of Mathematics Award. He has written a best selling book which was later made into a film called A Brief History of Time: From the Big Bang to Black Holes.

2. Franklin Delano Roosevelt became the 32nd President of the United States. He contracted Polio in 1921 which left him paralysed from the waist down. Refusing to accept his paralysis he tried different therapies and methods to try and walk and did master walking short distances using iron braces and a cane. He was careful not to be seen in a wheelchair in public. He established a foundation to help others with Polio and directed the March of Dimes program which eventually funded an effective vaccine.

3. Another successful politician, Pat Stack is a left wing revolutionary and part of the Socialist Workers Party committee. A child born from a Thalidomide pregnancy he uses a wheelchair. A great political mind and brilliant orator he holds meetings every year at Marxism in London and wrote ‘Stack on the Back’ for the Socialist Review until 2004.

4. David Blunkett was an MP, Education Secretary, Home Secretary and Secretary of State for Work and Pensions at various times. He has been blind since birth and has never let this fact hold him back in any aspect of his life.

5. Tanni Grey Thompson OBE is probably the best known disabled athlete, representing Britain in distances from 100m to 800m. She has won 14 Paralympic medals including 9 gold’s and she has broken over 20 records. She has also won 5 London Marathons as a wheelchair athlete and has become a TV presenter.

6. Marla Runyan is a legally blind marathon runner and has set several track and field records at the Paralympics in Atlanta, 1996. She has represented the US at the 2000 Olympics and became the first legally blind athlete to compete in an Olympics.

7. Itzhak Perlman is an Israeli-American violinist, conductor and teacher. He is a renowned musician who contracted Polio at age four and today uses crutches or a wheelchair and plays the violin while seated. In 1986 he received the Medal of Liberty from President Reagan. He is also an advocate for people with disabilities and promotes laws to allow easier access to buildings and transport.

8. Francisco Goya (1746-1828) was a Spanish painter who suffered an illness which left him deaf at 46. He went on to create some of the best known Spanish art of the 19th Century. He provided inspiration for the work of later artists including Picasso and Monet.

9. Helen Keller was an American author, political activist and lecturer who was blind, deaf and mute. She was the first deaf and blind person to be awarded a Bachelor of Arts degree.

10. Albert Einstein, the famous mathematician and physicist, had a learning disability and did not speak until he was three years old. He found maths and writing difficult at school but went on to become one of the best known scientists of all time winning the Nobel Prize for Physics in 1921.einstein

Salamanca Revisited!

Sunday, May 16th, 2010

SalamancaI have mentioned the Salamanca Statement many times in these blogs – and I keep returning to it – as it articulates everything that needs saying about Inclusion and Inclusive Education.

“The challenge confronting the inclusive school is that of developing a child centered pedagogy capable of successfully educating all children,including those who have serious disadvantages and disabilities. The merit of such schools is not only that they are capable of providing quality education to all children; their establishment is a crucial step in helping to change discriminatory attitudes, in creating welcoming communities and in developing an inclusive society. A change in social perspective is imperative. For far too long, the problems of people with disabilities have been compounded by a disabling society that has focussed upon their impairments rather than their potential.”

 

” A child- centered pedagogy can help to avoid the wate of resources and the shattering of hopes that is all too frequently a consequence of poor quality instruction and a “one size fits all” mentality towards education”

It gets better and better and better as you read it ……. if you would like to read a full copy of the ” Salamanca Statement and Framework For Action on Special Needs education – please email tommy@myspecialneeds.ie  and we will email it back to you. It truly is profound, inspirational and something that must become a reality!

Special Stories – a Great Idea and Website!

Saturday, April 3rd, 2010

BlobFeeder 

Who are We?

Special Stories Publishing is an award winning Irish publishing company which specialises in books for children, parents, families and schools throughout the world.  We introduce disabilities, social, health and education issues to all children in a child focused and unique way. Our stories are designed to celebrate diversity and difference and help children to learn the importance of accepting all friends and classmates as equals. 

 

A Social Enterprise:

Special Stories Publishing is a considered a ‘social enterprise’ as our business activities and goals are fuelled by a central social purpose. Special Stories was awarded a Social Entrepreneurs Ireland award in 2008, Social Entrepreneurs Ireland is part of a global network of social entrepreneurs. www.socialentrepreneurs.ie

 

Our Work with Charities:

Special Stories has partnered with a diverse range of charities and organisations throughout Europe, offering each one the chance to tell their very own ‘special story’.  When addressing such sensitive issues, joining forces with a professional organisation is vital to offer children and families the highest quality product possible.

 

All books published through Special Stories Publishing are reviewed and approved by healthcare professionals of the associated topics in question. Such as teachers, foster care and adoption social work teams, diabetes nurses and speech therapists, all of whom are experts in their field.

St Michaels House Special Needs School in Skerries North County Dublin

Thursday, August 27th, 2009

 

We received an email yesterday from Deputy Olivia Mitchell TD encouraging us to accept St Michael’s House policies as they stand. She also implies that we should not bother with this campaign, as by the time the new school will be built – it will be too late for our son. This was most disheartening – although Olivia meant well and has extensive personal experience of this situation herself.

 

This site will hopefully encourage others like us to fight the good fight – even when all around want you to accept things as they are. The very Irish trait of not complaining makes for a very endearing race- but equips us badly as advocates for injustices that deeply affect our lives.

 

As I reminded Olivia – it is always too soon to quit!