Archive for April, 2010

“Welcome to Holland”

Monday, April 26th, 2010

“Welcome to Holland”

By Emily Perl Kingsley, 1987.  All rights reserved.

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. 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 guide books 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 in 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 must go out and buy new guide books. 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….and Holland has tulips. 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.”

And the pain of that will never, ever, ever, ever go away…because the loss of that dream is a very very significant loss. But…if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

Interesting Poem- and well put – but I think she underestimates Holland and overestimates Italy!!- Each to their own.

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Survey on Autism -Please help out if you can!

Wednesday, April 21st, 2010

autismHello there I would be most grateful if you could put this on your blog. I have been funded to research and design an educational program to teach moderately autistic daily living skills. I am sending out this survey to parents of autistic children to help with the design process of this program. Many thanks Nicola Duffy.

 

Dear All

Your help in this research is very much appreciated; I have been funded by the Minister for Children and the National Children’s Strategy to conduct academic research in the area of autism and education. I would be most grateful if you could complete this survey, the results of this nationwide survey will feed into the development of an Irish designed educational software that can help autistic children learn daily living skills. Please can you send this link to anyone you know who has or teaches a child with autism. Link to survey: www.surveymonkey.com/s/autism_education sincere thanks,

Nicola Duffy BA(Hons) Pgdip

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New National Strategy for terminally-ill children- welcomed!

Monday, April 19th, 2010
 
TWO County Clare women have played a key role in the development of a new national strategy for supporting terminally-ill children.
Claire O’Dwyer-Quinn, Ballyea, who works as a palliative care nurse specialist at the Milford Care Centre, Limerick and Dr Siobhán Gallagher, an Ennis consultant paediatrician based at the Mid-Western Regional Hospital, Limerick were part of a national working party, which drew up a ground-breaking report, Palliative Care for Children with Life-limiting Conditions in Ireland.
Claire’s daughter, Olivia, died in August 2005 following a neurological illness. It gave her a unique insight into the palliative care needs of children with life-limiting conditions.
Welcoming the publication of the blueprint developed by the Department of Health, Claire pointed out that the majority of children with terminal illnesses end up dying in hospital, even though an assessment of needs undertaken in 2005 revealed most parents wanted their child to die at home.
She said it is the first time there is recognition that children with palliative care needs have very specialist demands, which are different from adults and said this needs to be reflected in health services that are provided.
The report also recommends greater collaboration between services such as the palliative care team at Milford Hospice and the paediatric unit at the Mid-Western Regional Hospital, Limerick.
“Any parent who is told their child has a terminal illness is left trying to cope with the worst news anyone can receive.
“Time is precious and whatever time a child has left should be used to ensure they are as happy as possible in a home environment. This new policy supports the need to provide hospice-type care at home,” she said.

ill child
Dr Gallagher said the report provides a national framework for a much better palliative care service, which she hopes will be delivered for parents of children with life-limiting conditions in the Mid-West.
The Irish Hospice Foundation (IHF) has pledged to provide in the region of €2.25 million over the next three to five years to fund the cost of providing eight outreach nurses with specific training for working with children with life-limiting conditions.
The report recommends that a new consultant paediatrician with a special interest in paediatric palliative care should have dedicated rooms in the new paediatric hospital in Dublin, to provide clinical governance and guidance for existing consultant paediatricians, who don’t have any specific training in this area.
Traditionally, palliative care for children focused on children with cancer who got services from an oncology department, in association with adult paediatric care teams.
However, an increasing number of children who have serious neurological or genetic conditions, which limit their life, have to be content with the provision of services on an ad-hoc basis.
It is expected that one outreach nurse will be provided in the Mid-West and this nurse will work beside the local palliative care team.
Meanwhile, the Jack and Jill Children’s Foundation provides direct funding to families of children with brain damage who suffer severe intellectual and physical developmental delay, enabling them to purchase home respite care at a cost of over €3m annually.
Chief executive officer, Jonathan Irwin pointed out it would cost €146,000 a year to keep a child in hospital, compared to just €16,000 in their own home.
“No Clare family will wait more than four or five days without having a nurse from the charity at their doorstep once we are contacted. I think this is the worse thing to happen to any family. It shouldn’t have taken a charity to provide a service that should be provided by the State,” he said.

Author : Dan Danaher 

Clare Champion

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Thursday 7th October 2010- A date for your diary!

Tuesday, April 13th, 2010

samuelwww.myspecial needs are hosting a conference on Thursday 7th October 2010 in D4 Hotel (formerly Jury’s) called Positive Attitudes and Actions for Inclusion featuring the award winning film “Including  Samuel”

This conference/gathering of people will have as it’s main theme/purpose  the showing for the very first time in public in Ireland a documentary called “Including Samuel”

 Including Samuel is an award winning documentary that has played on PBS, and has, and continues to garner, worldwide acclaim. Professional Photojournalist Dan Habib, tells the story of his son, Samuel, diagnosed with cerebral palsy and several other families of children with special needs.

 Shot over four years, it is a very personal, passionate portrayal that takes a close, sometimes painfully honest look at children with special needs and their families. Habib respectfully shares the trials and struggles of these families but also the strength, successes and boundless hope that is such a big part of their lives.

Including Samuel carries a powerfully strong message of inclusion for all people with special needs. Yet honestly documenting the cultural and systemic barriers that are still prevalent in our society today.

 The film maker and his wife have agreed to come over from Boston to attend and speak at the event.

 We will be inviting a large audience and expect that between 500 and 1000 people will attend the event. Among the attendees, we expect to have a Government Minister, many TD’s and Senators, representatives from Government Departments, Special Needs Service Providers, Special Needs Schools, Primary Schools, Secondary Schools, Third Level Education providers and a whole host of voluntary and professional associations. The event will be delivered theatre style.

 Our chosen date for this event is Thursday 7th October 2010 from 7.00 p.m. until about 10.30 p.m 

All are welcome and tickets are FREE! 

 Please contact us for tickets and for further information.

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Inclusion Works!

Tuesday, April 13th, 2010

Caroline Carswell was 16 months old when her parents’ fears were realised: their little girl was profoundly deaf. It was the early 1970s, a time when it was usual for children with special needs such as Caroline to attend special schools, or drop out of the school system entirely.

But Carswell’s parents wanted something different for their child. At 18 months old she had a hearing aid fitted and began ten years of speech therapy at the National Children’s Hospital on Dublin’s Harcourt Street.

Carswell quickly became a proficient lip-reader and, despite a specialist school for the deaf being relatively nearby in Cabra in Dublin, she attended the primary and secondary schools near home in Rathgar.

She went on to study history at Trinity College Dublin and undertook postgraduate education in Britain and the US.

‘‘My parents wanted me to go into mainstream schooling because I could stay within the family and within the community. If I had been bused away to school every day I wouldn’t have had that,” says a quiet-spoken Carswell.

Back then, Carswell’s parents aim of having their child in mainstream education was highly progressive. It wouldn’t be until 30 years later, with the enaction of the Education for Persons with Special Educational Needs (Epsen) Act in 2004, that the concept of inclusive education for children with special needs would be enshrined in law.

The act was considered a ground-breaking piece of legislation which redefined special educational needs and copper-fastened the rights of children with such needs. It was welcomed by legislators and educators alike.

The integration of such children into mainstream education had, until that point, been developing on an ad hoc basis. Now, a sea change in education was about to take place.

With 90 per cent of deaf children – around 2,000 children – now in mainstream education, Carswell concurs that how much the children learn depends largely on the commitment of the teachers in supporting and integrating the special needs child.

‘‘Being in mainstream schooling is best for most children. It is good also for the other children, who learn to understand special needs better. Yet there is no teacher-friendly information being supplied to schools about working with special needs children. Parents have to fight for every bit of support they get.”

Source: Sunday Business Post 20th march 2010untitled

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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.

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