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The Parent’s 10 Commandments for the Specialist

Norman Brown, parent of a child with deafblindness, a professor at the Birmingham University and coordinator of the
programme to support parents of children with deafblindness, wrote the ”Parent's 10 Commandments for the Specialist”:

  1. 1. Assure me that I speak with someone who knows what it is all about!
    2. Do not forget that I know what I talk about!
    3. Do your best to find someone who has gone through what I am going through!
    4. Be honest with me!
    5. Truly help me, don't just give me advice!
    6. Involve me in everything you do with my child!
    7. Don't teach my child without teaching me!
    8. Accept my weakness!
    9. Accept your weakness!
    10. Don't tell me you understand, show me that you understand!

Photo by Dragos Gontariu on Unsplash

8 Women with Deafblindness

We propose that today, March 8, we get to know the life stories of eight women with deafblindness who, through their strength and determination, broke the barriers created by their lack of sight and hearing and managed to prove that nothing is impossible.

Victorine Morriseau (1789-1832, France) was the first known person with deafblindness who learned a formal language of communication (in a religious context).

Laura Bridgman (1829 –1889, U.S.A.)  was the first educated  child with deafblindness in the United States, more than 50 years before Helen Keller. At the age of two, due to scarlet fever, she loses her sight, hearing, smell and taste. She arrives at the Perkins Institute for the Blind where she learns to communicate using tactile finger-spelling and Braille.

Ragnhild Kåta (1873 – 1947, Norway) was the first person with deafblindness in Norway to receive a formal education. At the age of three, she lost four of her five senses: sight, hearing, taste and smell, most likely from scarlet fever. At the age of 15, she started studying at the Hamar Institute for the Deaf where she learnt to read and write in Braille, but also to speak. She learnt to embroider, knit and weave, thus becoming independent.

Helen Keller (1880 – 1968, U.S.A.) she is probably the best known person with deafblindness in the world. An extremely strong woman, she became a writer and activist for the rights of people with disabilities, despite the fact that, at the age of only 1 year and a half, she completely lost both her sight and hearing, due to an illness - most likely meningitis. With the help of her teacher, Anne Sullivan, also a visually impaired person, she learnt to communicate, then attended the courses of the Perkins Institute for the Blind and then Harvard University, becoming the first person with deafblindness with a degree in arts.

Ragnhild Kåta

Laura Bridgman

Helen Keller, Theresa Lin Chan

Yvonne Pitrois (1880 –1937, France) was a writer. At the age of 7, she lost her hearing due to fever caused by sunstroke, and her vision was deeply affected. She wrote numerous articles in France, England, Switzerland and the United States and at the age of only 18 she published her first book. She became a member of the French Academy in 1929.

Alice Chapman (1901 –1966, Australia), the first person with deafblindness to receive an education in Australia. She lost both her sight and hearing at just two years old due to meningitis. She learned to communicate at the Institute for the Hearing Impaired, a school she graduated from and where she remained as a teacher.

Olga Skorokhodova (1911 – 1982, U.S.S.R.) was a scientist, therapist, teacher and writer. She was born in a small town in the U.S.S.R. (now Ukraine) and at the age of five she lost both her sight and hearing due to meningitis. At the age of 13, she arrived at the Clinical School for Deafblind Children, where, under the guidance of Professor Ivan Sokolyansky, she learned to speak and communicate. She became a researcher at the Institute for People with Disabilities within the Soviet Academy of Pedagogical Sciences.

Theresa Poh Lin Chan (1943 –2016, Singapore), writer and teacher, she lost her hearing at the age of 12 and her sight two years later. She was accepted to the Perkins Institute for the Blind, where she studied mathematics, learned to dance, ride, skate, and knit. It was there that she fulfilled her greatest dream, that of meeting Helen Keller. She later became a teacher at the School for the Blind in Singapore.

Yvonne Pitrois

Alice Chapman

Olga Skorokhodova

Information and photo source: Wikipedia

20 Years with Sense

Today, February 2nd 2020, Sense International Romania celebrates 20 years of activity. We are proud that in these twenty years, the name of the Foundation Sense International Romania became, in our country, synonym with deafblindness.

For all those who wish to share their thoughts with us on this special day, we created a place where messages can be shared:

REASONS TO CELEBRATE

Looking back, we warmly think about the children with deafblindness, their families, the young people with deafblindness whom we have met, their teachers, the very special people that were by our side, the beautiful moments, the successes, but also the more difficult times we had to overcome.

It is truly a challenge to summarise two decades in only a few paragraphs. If we were to choose the key moments of our existence, one of them would be the moment when deafblindness was recognised as a distinct disability in the legislation.

Then, metaphorically traveling from the beginning to now – everything we have achieved for the education of children with deafblindness, from developing a curriculum for their education to equipping schools with specialised equipment, from training teachers in the field to developing digital solutions adapted to children with deafblindness. Then, another project close to our heart: everything that meant and still means the early intervention for babies born with sensory impairments, from developing and equipping early intervention support centres to training specialists in the field.

WE MUST LISTEN TO THEIR VOICE

Our work alongside young people who were born with or acquired deafblindness started with the establishment of vocational centres where they learn a trade. We continued with activities aiming at developing their independent living skills, through orientation and mobility courses, leadership and advocacy, to demonstrate that they too have a voice and we, adults and specialists from decision making authorities, we must listen to their voice.

These were intense and fruitful 20 years, where we created and collected a wealth of specialised resources in the field, we offered teachers the opportunity to learn from each other through countless meetings, workshops and conferences, we created and maintained connection for the sake of those who need the support the most, children and young people with deafblindness and multisensory impairments.

One of the most touching times, full of hope, energy and enthusiasm, were the times when we had professor Vasile Adamescu with us. He was a true mentor, a guide who took us by the hands and guided us towards really understanding what it means to be without sight and hearing, a true, patient and calm friend, an accomplished promoter of the rights of people with deafblindness in Romania.

LOOKING FORWARD

From the twenty years ahead of us, we wish to fully attain our vision, a world where all children and adults with deafblindness can become active and equal members of the society, a society that is inclusive and aware of the fact that we are all equal and have the same rights.

2020 with Sense

A full year for Sense International Romania

  • We started the e-Sense project, through a meeting with the team project consisting of representatives of partners: Sense International Romania, Code for Romania, School Centre for Inclusive Education ”Cristal” Oradea, Special Technological Highschool "VasilePavelcu" Iasi and School Centre for Inclusive Education „Constantin Pufan” Timişoara. The project is funded by the Orange Foundation through the World through Color and Sound 2019 Program.

 

  • We organized a trip to the mountains where children and young people with deafblindness participated in communication and socialization activities, orientation and mobility - among others, for the first time for them, they learned to ski.

 

  • We organized the Beyond the Senses event - where the organization's partners and funders experienced deafblindness in the Sensory Tent, on the occasion of its 19th anniversary.

 

  • We started the Education with Sense International project, funded by the Nelumbo Foundation through Sense International UK, which aims to conduct an online course in the field of deafblindness and the formation of a group of young people with deafblindness in advocacy and leadership.

 

  • We organized our first online workshop in the field of deafblindness, part of the e-Sense project.

 

  • We have equipped special schools where children with deafblindness study with transparent masks, disinfectants and other protective equipment against the SARS-COV-2 virus, replacing the usual activities organized in schools on the occasion of International Helen Keller Week.

 

  • We equipped the partner schools in the e-Sense project with tablets for children with deafblindness and laptops for teachers.

 

  • We have created accessible videos, in sign language, with contrast, subtitles and text, addressed to people with visual and hearing impairments, addressing major issues of the current context of life - what this virus means, how to protect ourselves, what to do if we have symptoms, from where do we get information?

 

  • We developed the Sensi project - online safety for children and young people with sensory disabilities, a project funded by the Orange Foundation through the World through Color and Sound 2020 Program.

 

  • For families, we made and translated materials containing ideas for activities, games and exercises that can be done with children with deafblindness at home, with minimal costs, to continue the therapy that took place in schools, through the series of materials #thursdayplay.

 

  • For teachers, parents, psychologists, educators, social workers, doctors, physiotherapists, students - we organized for free the Online International Conference Deafblindness in the context of the pandemic.

 

  • We launched the Campaign I TOO HAVE A VOICE! on the occasion of December 3 - International Day of People with Disabilities - through which children and young people with deafblindness will have a better understanding of their rights, as described in the UN Convention on the Rights of People with Disabilities.

 

  • At the end of the year, we thank all those who have been and are with us. We especially thank the companies that, despite a difficult year, have chosen to direct 20% of the profit tax to the cause of children and young people with deafblindness in Romania.

The rights of people with disabilities – explained for children

In 2018, we celebrated for the first time December 3, the International Day of Persons with Disabilities, through activities designed to highlight the qualities and resources that students with deafblindness and multisensory impairmens have. In 2019, we decided that this day would be celebrated in memory of VASILE ADAMESCU, a person with deafblindness, a member of the Board of Directors of Sense International Romania, a Promoter, in the true sense of the word, of this very special disability.

This year, 2020, is one that challenged us to deal with the pandemic caused by the SARS-COV2 virus. This context has put us in a position to identify new opportunities to be in contact with people with deafblindness, with our partners who have been with us for years.

We do this in a different way, which involves using digital technology in such a way as to make us friends, an easy tool for communication, connection and openness to access resources, opportunities and, above all, to be connected with others beyond all the impediments related to maintaining the physical distance and the other measures related to the personal safety of each one, but also of the loved ones in our community.

The campaign will start from 3 December 2020, the International Day of People with Disabilities, and will run until 31 March 2021. This campaign will raise awareness of some of the rights of people with disabilities, in accordance with the United Nations Convention on the Rights of Persons with Disabilities, presented in a way that is accessible to children and young people:

  • Equal rights;
  • Girls and women with disabilities;
  • Children with disabilities;
  • Freedom, safety, protection;
  • Independent life, mobility;
  • Education;
  • Health;
  • Family;
  • Fun, good times and sports.

For a better understanding of these concepts, we have created the material "I too have a voice - the Convention on the Rights of Persons with Disabilities", which can be downloaded below in graphic and text format:

I too have a voice!

Today, December 3rd, is the International Day of People with Disabilities. Words like DIGNITY, EQUAL OPPORTUNITIES, INCLUSION, ACCESSIBILITY, RESPECT or NON-DISCRIMINATION must turn into deeds!

Today, more than ever, we remember professor Vasile Adamescu, who said: ”I hope that through my example, I can help people in difficult situation, inspire people with disabilities and convince the society that we too can be useful.”

Today is the day when, more than ever, the principles of the United Nations Convention on the Rights of People with Disabilities must prime:

  • Respect for inherent dignity, individual autonomy including the freedom to make one’s own choices, and independence of persons;
  • Non-discrimination;
  • Full and effective participation and inclusion in society;
  • Respect for difference and acceptance of persons with disabilities as part of human diversity and humanity;
  • Equality of opportunity;
  • Accessibility;
  • Equality between men and women;
  • Respect for the evolving capacities of children with disabilities and respect for the right of children with disabilities to preserve their identities.

Only together can we do this! All the best wishes to all people with different abilities, to their families and dear ones!

Sense International Romania launches the campaign I TOO HAVE A VOICE! Children ad young people with deafblindeness from partner schools will prove they have a voice, making videos about one or more of the rights of people with disabilities as they are described in the UNCRPD.

This campaign is part of the project called Education with Sense International, funded by Nelumbo Foundation. Implemented in 2020-2023, the project aims to organise activities with children and young people with deafblindness from Romania, promoting their own rights themselves, as well as to develop an online course in the field of deafblindness.

The campaign regulations will be available soon and sent by email to all Sense International Romania partner schools.

 

e-Sense – the Software for the Education of Children with Deafblindness

PRESS RELEASE

Bucharest. November 24th. The Foundation Sense International Romania, Code for Romania and Orange Foundation are launching the platform www.esense.ro during the International Conference “Deafblindness during the Pandemic”, organised online.

The platform is founded on the professional expertise of the specialists in the field of deafblindness from the Sense International Romania and partner schools: School Centre for Inclusive Education Cristal Oradea, School Centre for Inclusive Education Constantin Pufan Timisoara and Special Technological Highschool Vasile Pavelcu Iași, combined with the expertise of professional and enthusiastic community of young people from Code for Romania, who develop IT solutions to respond to various issues related to people and society.

The project e-Sense is funded by Orange Foundation with the amount of 414 804 lei, through the programme “The World through Colour and Sound”, the largest fund dedicated to people with hearing / visual impairments in Romania.

This project appeared as a response to the concrete needs of children with deafblindness. The work with the child in this context, the games created through these digital instruments, are benefit when educating special children, ensuring a high level of communication, socialisation, cognitive and psychological development, a support for the parents and/or the teacher”. Loredana Prisecaru, Special Technological Highschool Vasile Pavelcu Iași

“We are a handful of people trying to do all that we can to change the life of others for the better. At the same time, the feeling of being a part of this change, transforms us too into better people.” Eva Oprea, School Centre for Inclusive Education Cristal Oradea

Digital technology is increasingly prevalent in the education system and everyday life, but not for children with deafblindness. In order for them to have access to quality education and not to "fall behind", software is needed to adapt to their specific needs given by the combination of visual and hearing impairments.

In the absence of vision and/or hearing, access to knowledge is more limited, which is why specific sensory stimulation activities are necessary, supporting the child to be in contact with the world. The main aim of e-Sense is to transpose into the digital technology realm exercises that lead to the development of perceptive skills to detects sensory stimuli and to become aware of their presence, the development of attention to sensory stimuli, to localise them. Explore and manipulate, recognise and discriminate.

“e-Sense is the solution that schools had needed for a very long time. A customisable solution that allows teachers to utilise, in an adapted manner, the specific situation of each child, because each child has very specific requirements.  We succeeded to build a system that will support teachers in early intervention and not only, with flexible exercises and games that follow the curriculum in force and that is open to everyone, it is open-source, replicable and reusable all around the world.” Olivia Vereha, Chief Operations Officer and co-founder Code for Romania

After registering an account on the platform www.esense.ro, the specialist will have access to a series of exercises that can be made together with the child. The specialist will have an increased level of control upon the exercises features such as shapes, colours, contrast, size, objects direction of movement – all in order to personalise the exercises depending on the child’s development level. The specialist will be able to record, monitor and assess the child’s progress, and therefore having a better initial and on-going assessment process.

The exercises are created in accordance with the National Curriculum for the Education of Children with Deafblindness/Multisensory Impairments (Ministry of Education, Research and Innovation Order no. 5243/01.09.2008) and the Educational Content for Ante-pre-school Early Intervention for with Deafblindness/Multisensory Impairments (Ministry of Education Order no. 3071/18.01.2013).

 

About Sense International Romania

Sense International Romania is a Romanian organisation established in 2001 with the aim to improve the life of people with deafblindness and multisensory impairments in our country. SIR is the only organisation in Romania actively fighting for the rights of people with deafblindness. Through national level programmes that promote the early intervention foe babies born with sensory impairments, the education of children with deafblindness/MSI and the provision of vocational services, SIR manages to brig a change for the better in the life of hundreds of people with this type of disability. Our field of interest is represented  by 4 major strategic directions: promoting the rights of people with deafblindness, health, education and social inclusion.

www.surdocecitate.ro/en/

About Code for Romania

Code for Romania is the second largest organisation in the field of civic technology in the world. The association develops pro-bono software solution, in open-source system, to solve social issues, with the support of more than 1800 volunteers from Romania and Abroad. In 2020 alone, the solutions in the Covid-19 ecosystem (stirioficiale.ro, rohelp.ro, datelazi.ro etc) and the voting ecosystem (Vot Diaspora, Rezultate Vot etc.) have been used by over 8 million Romanians.

www.code4.ro/en/

About Orange Foundation

Orange Foundation is a non-for-profit organisation involved in the life of the community, through the implementation of philanthropic projects meant to bring positive changes in the life of disadvantaged people. In more than 8 years of activity, Orange Foundation invested over 6.5 million Euro in digital education projects for disadvantaged people and in health, education and cultural projects for the benefit of people with visual or hearing impairments, aiming at their social integration. For more details, visit www.fundatiaorange.ro.

The conference: We turned the pandemic challenge into an opportunity

Bucharest. November 23rd 2020. The Foundation Sense International Romania is organising online The International Conference ”Deafblindness during the Pandemic”, between November 23 – 25, 2020.

After more than half a year since the start of the COVID-19 pandemic, the world in which we live has changed and is still changing. People with deafblindness - children, adults or elderly - as well as their families, have found themselves facing more marginalisation and neglect, they are more vulnerable and more exposed to isolation than ever, during the crisis.

Deafblindness refers to a situation where a person is confronted with both visual and hearing impairments. It may be about children born this way, young people and adults acquiring it due to disease or accidents, or elderly people who gradually lose their sight and hearing because of old age. Regardless of the cause, we are convinced you agree that deafblindness is a severe disability, causing great challenges in communication, in the way people make friends and live their every day life.

Together with 25 international and national speakers from Great Britain, India, The Netherlands, Norway, Romania, Russia and Scotland we want to learn how the pandemic influences the process of communication for people with deafblindness, in what way can technology be of support, what are the challenges but also the opportunities during this time.

We had planned a conference in the field of deafblindness for this autumn. We had planned it at the request of special education teachers working with children and young people with deafblindness, so as to learn from each other and to learn the latest news. But the pandemic came. Obviously, a face to face conference became impossible. We turned the pandemic challenge into an opportunity, by holding an international conference, to answer together to questions like: what is it like not to see or hear very well during the pandemic? How do you learn? How do you communicate? Can technology be of help? What are the opportunities, how about the challenges?” Etelka Czondi, Director Sense International Romania.

An important moment of the conference will be the launch of the platform e-Sense together with Code for Romania and Orange Foundation. Digital technology is increasingly prevalent in the education system and everyday life, but not for children with deafblindness. In order for them to have access to quality education and not to "fall behind", software is needed to adapt to their specific needs given by the combination of visual and hearing impairments.

On the internet page dedicated to the conference, there is more information about this event, including the Abstracts Book with summaries of all presentations and information about the speakers.

We thank the over 200 registered participants: parents, teachers, special education teachers, educators, psychologists, social workers, physiotherapists, doctors, students, other specialists, for their interest. The conference attendance is free of charge. However, any donation received from participants is welcomed and will contribute towards supporting children and young people with deafblindness, as well as towards organising future similar events.

Conference webpage: https://surdocecitate.ro/en/deafblindness-in-pandemic/

For Children and Young People – Deafblindness during the Pandemic

In a time when physical and social distancing has an influence on every aspect of our life, it is our responsibility to make sure that people with deafblindness are able to deal with these challenges, so that the risk of marginalisation, neglect and double isolation is as reduced as possible.

Why double isolation? Deafblindness represents a combination of both hearing and visual impairments, leading to great difficulties in communication, access to information, orientation and mobility. When these difficulties are overlapped by those caused by the pandemic, the risk of isolation becomes major.

ACCESS TO INFORMATION

In order to make the information on the COVID-19 pandemic accessible, we have produced a series of videos that address the major themes of the current life context, which are accessible to people with sensory impairments (in Romanian sign language, with contrast, subtitles and text, also in Romanian). In addition, in order to support the families of children with deafblindness, we have produced and translated materials containing activities ideas that can be done at home with the children, in order to continue the sensory stimulation that took place in schools.

Working in partnership with the Ministry of Education and the special schools for visually impaired and hearing impaired children from all over the country, we have come to their aid during this period. We have donated materials to 16 schools across the country – transparent masks for better communication with hearing impaired people, disinfectants and other protective equipment against SARS-COV-2 virus.

"The transparent masks were a very pleasant surprise for our children," said the director of one of the partner kindergartens where children with deafblindness, multiple sensory impairments and hearing and vision impairments are enrolled. "It's difficult for them to understand what we're saying to them with surgical masks on our faces, but the fact that they can now see the mouth and read the lips of the interlocutor has turned the safety of wearing the mask into a fun play for them."

TECHNOLOGY

A big part of our lives happens online these days. Because we believe that children with deafblindness must also have access to quality education and not be "left behind", we have channeled much of our efforts in this area.

Thus, we are in the midst of implementing the project "e-Sense – using digital technology, we are revolutionizing the education of children with deafblindness". We are working on this project together with Code for Romania, a community of young professionals and enthusiasts who develop IT solutions with the aim of solving society's problems, as well as with three schools providing educational services to children and young people with deafblindness. We develop, test and we will approve e-Sense – a package of open source, free and accessible educational software for over 335 children with deafblindness in Romania, for their parents and their teachers. Intensive work is being done on this project and partner schools are receiving laptops for the teachers involved in the project and tablets for children to use. This project is funded by the Orange Foundation under the World through Color and Sound Funding Program, 2019 edition.

In 2021 we will start a new project, funded also by the Orange Foundation under the World through Color and Sound Funding Program, 2020 edition. The project is called "Sensi" and aims to create tools to protect children and young people with sensory impairments online, so as to diminish the risks of online abuse.

For Specialists – Deafblindness during the Pandemic

ONLINE COURSES

During this period we are developing an online course in the field of deafblindness. Over the years, we have organized many such courses for specialists working with children and young people with deafblindness. However, in order to reach as many professionals as possible, we decided last year  to develop an online initiation course and a specialization course in this field. With financial support from Sense International UK and the Nelumbo Foundation, we hope to start the course in 2021.

CONFERENCE

Another good news for those interested is an event that will be held online from 23 to 25 November 2020, when we  organize the International Conference "Deafblindness during the Pandemic".

With the input of international and national speakers, we want to know how the pandemic has influenced the communication process for people with deafblindness, how technology can support them, what are the challenges but also the opportunities during this period. The conference is aimed at a wide variety of public, those who in their work or in their daily lives interact with people with deafblindness: parents, teachers, special education teachers, psychologists, educators, doctors, social workers, physiotherapists, students, NGO representatives, other specialists in related fields.

The participation is free of charge for a limited number of participants. However, any donation received from participants is welcomed and will have a decisive contribution to supporting children and young people with deafblindness and to organizing similar events in the future. For more details, please access https://surdocecitate.ro/en/deafblindness-in-pandemic/

 

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