vision book The MY CHILD, OUR JOURNEY Te Puka MoemoEĀ: Tōku tamaiti, tō tātou huarahi - PDF

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The vision book MY CHILD, OUR JOURNEY Te Puka MoemoEĀ: Tōku tamaiti, tō tātou huarahi Information for families and whānau about children who are blind, deafblind or have low vision. First edition 2014

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The vision book MY CHILD, OUR JOURNEY Te Puka MoemoEĀ: Tōku tamaiti, tō tātou huarahi Information for families and whānau about children who are blind, deafblind or have low vision. First edition 2014 Thank you This book was inspired by The Family Book, a book about children diagnosed with a hearing loss first published in This book is a joint project by the Ministry of Education in partnership with the Ministry of Health, Blind and Low Vision Education Network NZ (BLENNZ) and the Blind Foundation (legally known as the Royal New Zealand Blind Foundation of New Zealand). Thank you also to the following organisations who provided feedback: Parents of Vision Impaired NgātiKāpōOAotearoa Deafblind (NZ) Incorporated THANK YOU to the many parents and professionals throughout New Zealand who contributed their ideas and knowledge, and to BLENNZ and the Blind Foundation for their advice on publishing this book in braille and other accessible formats. The Vision Book: My Child, Our Journey is published by the Ministry of Education. Provide feedback on this book by ing For extra copies of this book, please contact the Blind and Low Vision Education Network NZ (BLENNZ) on (Auckland) or the Blind Foundation on ISBN , The Vision Book: My Child, Our Journey (print version) ISBN , The Vision Book:My Child, Our Journey (large print) ISBN , The Vision Book: My Child, Our Journey (braille version) ISBN , The Vision Book: My Child, Our Journey (online version) contents Contents Introduction 5 Section 1: Early years 6 Your child s diagnosis 7 Talking can help 8 Your child s vision team 10 How the eye works 12 Why a child s vision is assessed 13 How children are assessed 13 Types of assessments 14 How parents can take part 15 Language used to describe vision 16 Feeling overwhelmed by too many people 16 Communicating with your child 17 At home with your child 18 Growing up Robert's way 20 Getting involved in the blind community 22 Paying for services 22 Needing time out 22 Other support 23 Preparing for early childhood education 23 Will your child be okay? 24 Choosing an early childhood education service 24 Settling in 25 Getting the right support 26 How will you know if things are working well? 26 Helping your child to develop and learn 26 Preparing for school 27 Support people give mum confidence about the future 28 Section 2: School years 30 Choosing a school 31 Starting school 33 Succeeding at school 34 Assistive technology options for learning 35 Planning and monitoring your child s education 36 The Individual Education Plan 36 What you can expect your child to learn at school 37 The Expanded Core Curriculum 37 Funding and support at school 38 Changing schools 39 Resource teachers the key to settling in well at school 40 Preparing for secondary school 42 Starting secondary school 43 National Certificate of Educational Achievement (NCEA) 44 Support for tests and exams 44 Enjoying life outside the school gates 45 Finding life tough 45 Secondary school gets it right for Renee 46 Section 3: Young adult years 48 Growing up 49 Leaving school 49 Planning for change 51 Parent group makes shy mum ten foot tall and bullet proof 52 Socialising and developing life skills 54 Going to uni or polytech 55 Contact and support 55 Getting a job 56 Settling into a job 57 Finding a place to live 57 Growing up with low vision Mary s story 58 Support from government agencies 62 Making a complaint 63 Looking to the future 63 Appendix 64 People, roles and responsibilities 65 Organisations and their websites 67 Glossary of terms 68 This book is for the parents, caregivers, and families and whānau of children and young people who are blind, deafblind or have low vision. It gives you information about the people, support and services you and your child may need in your journey through life. introduction Introduction Welcome to The Vision Book: My Child, Our Journey. The Vision Book: My Child, Our Journey starts by looking at a child in their early years, at the time of diagnosis, and covers their experience at school and into early adulthood. It also features stories from people who have parented or supported a blind or low vision child or have lived with a vision impairment themselves. The book gives readers a general idea of what to expect, recognising that your own experience may look quite different to what is represented here. We hope, however, it will give you confidence and reassure you that there are many people and organisations available to support you and your child. We also hope that it will give you an idea of how the services available are likely to change, depending on your child s needs, age and where your child is at in life. You will see that education is a central theme of this book, but we hope it also weaves in enough information about the parent, health and disability services available to be useful in a broader sense. The book is not intended to be read in one go, but rather dipped into as and when needed, over time. Readers wanting quick access to information about a particular topic are encouraged to use the indexed glossary at the back. The Vision Book: My Child, Our Journey is the first book of its kind developed by the Ministry of Education and its partners. The idea is to add to what is here and develop more materials for the blind, deafblind and low vision community over time. To help us, please tell us what you think of this book. Is it useful? What parts work well? What could be improved? Your feedback is important and will play a key role in any further information. Thank you. Please contact us at: A note about the terms used in this book In this book, we refer to children and young people who are blind, deafblind or who have low vision. We recognise that this is a diverse group of children and young people and that some of them may also have physical, intellectual and/or developmental needs or conditions that improve, deteriorate or change over time. However, we have chosen to use the following definitions of blind, deafblind and low vision (thank you to the Blind Foundation for help with these definitions). Blind having either no vision at all or very low vision. Some blind people will be able to see shadows and movement, but they get most of their information about the world from senses other than vision. Deafblind (also called dual sensory) having a combined loss of hearing and vision, affecting the ability to do everyday things, especially communicating with others and accessing information. Low vision having a loss of vision that affects someone s ability to complete everyday activities such as reading, looking at pictures, playing games or moving about. People with low vision have some useful vision, but their ability to use that vision may vary from day-to-day and task-to-task. 4 5 SECTION 1 EARLY YEARS Section 1: Early years Your child s diagnosis Early diagnosis is good news! it is important to pick up a child s vision impairment early. That way you can get the help you need as soon as possible. Finding out your child is blind, deafblind or has low vision can be a difficult time for families and whānau. It is natural to feel apprehensive about your child s future and anxious about what is in store for you. If your child s condition wasn t picked up at birth and has been diagnosed in hospital or identified later, the news may be a total shock. You may also have found out your child has hearing loss or other needs. There may be no history of blindness or low vision or any other disability in your family. If you are a parent who was concerned about your child s recent development, it could be a relief to get this diagnosis because it answers some of your questions. Whatever your situation, it is okay to experience feelings of sadness, guilt, anger or denial and to worry about how you will cope and how your child s diagnosis impacts on the future. We are still grieving in many ways. But it does lessen with time. For me, it was the not knowing what he would do, what would happen to him in life. That was hard. But now I see that he will be fine he just goes about things differently, in his own way. Parent Your feelings are personal and highly individual. How you feel will depend on many factors your personality, your life experience, your coping style and how much support you have around you. Give yourself time to come to terms with your child s diagnosis. Be patient with yourself and reach out for support when you need it. 6 7 the vision book Talking can help It helps to talk about your situation and how you are feeling with someone you trust and respect. You may want to talk to parents who have gone through something similar or professional counsellors (eg, a Blind Foundation counsellor) with knowledge about vision loss. Talk to other parents it s good to talk. Many parents say one of the things that really helped was talking to other parents who d been through the same thing. Gary from the Blind Foundation and the BLENNZ Visual Resource Centre staff have become part of our family, part of our lives. They ve been an absolute lifeline. I don t think we d have survived without them, especially in those early years. Parent Be open if you can. The more open you can be, the easier things will become over time. Parent The Blind Foundation counselling service The Blind Foundation (legally known as the Royal New Zealand Foundation of the Blind) provides a free, nationwide counselling service to children and their families from fully qualified counsellors. Counsellors will come to your home or you can visit them at the Foundation s offices whatever works for you. See: Freephone Ngāti Kāpō O Aotearoa Inc Ngāti Kāpō O Aotearoa Inc is a national kaupapa Māori information and support service for people of all ages who are blind, deafblind or have low vision and their families and whānau. They run regional support groups and programmes focused on strengthening and sustaining the well-being of whānau. See: Freephone Section 1: Early years Parent2Parent Parent2Parent is a nationwide parenting network for parents of children with disabilities. The organisation can put you in touch with parents of children who have similar disabilities to your child. They also offer training and information. See: Freephone Parents of Vision Impaired Parents of Vision Impaired (PVI) is a national parent support group. It offers parents advice, information and opportunities to meet other parents. The group also has parent support workers who can give you one-on-one help and support. PVI publishes a regular magazine and has a members-only Facebook page for families and whānau to share information and network. See: Freephone Deafblind (NZ) Incorporated Deafblind (NZ) Incorporated works closely with the Blind Foundation to offer support to children who are deafblind and their families. The organisation runs support groups across the country as a way to help coordinate services and provide families and whānau with the opportunity to meet and support one another. Deafblind NZ can also put parents in touch with the Blind Foundation s three regional deafblind coordinators. See: Blind and Low Vision Education Network NZ (BLENNZ) BLENNZ is an education service provider for children from birth until they are 21. BLENNZ employs Resource Teachers: Vision (RTVs) and Developmental Orientation and Mobility (DOM) specialists who work across New Zealand from a main campus, Homai Campus School, in Auckland and regional Visual Resource Centres throughout the country. They offer children and their families and whānau throughout New Zealand a wide range of services, information and advice. They will come to you at home at the time of your child's diagnosis or visit you at your child s early childhood education service or school wherever suits you best. See: Phone (Auckland) Ministry of Education, Special Education Ministry of Education employs a wide range of education specialists who visit families and whānau at home (or at a place that suits) in the early years and who work with children throughout early childhood and school as a child develops and grows older. Specialists include early intervention teachers, physiotherapists, occupational therapists and educational psychologists. See: (look for information about special education) Freephone the vision book Your child's vision team Ministry of Health The Ministry of Health funds a range of disability services for children and their families and whānau who meet specific eligibility criteria and are assessed as needing such services. Needs Assessment and Service Coordination (NASC) organisations coordinate access to Ministry of Health funded support and respite services while District Health Boards provide access to developmental and therapy support for children through child development teams. In some cases, equipment such as glasses, hearing aids and wheelchairs may be funded through the Ministry of Health. See: services-and-support/disability-services Freephone The Ministry of Health s Well Child programme is a series of 13 health checks offered free to all New Zealand families and whānau for children from birth to five years. The programme includes a GP check at six weeks (linked to the six-week immunisations), as well as a health check before a child starts school. See: Freephone (PlunketLine) It is likely you will find yourself involved with a wide range of people throughout your child s life. At times, you might find yourself working closely with people in the health sector whose focus will be long term but may come and go depending on your child s age, diagnosis and overall needs. These people are also likely to be more involved with the diagnosis and assessment of your child s medical needs. These people might include: family doctor (or GP) a health professional who looks at the general health of your child and can refer you to specialists for a clinical assessment ophthalmologist a specialist eye doctor who checks the health of the eye and can provide information about diagnosis and treatment orthoptist a health professional who diagnoses and treats eye problems related to eye movement and coordination optometrist someone professionally trained and registered to examine the eyes for visual defects, diagnose problems or impairments and recommend glasses or other corrective lenses or provide other types of treatment paediatrician (a medical professional doctor) specialising in children s health and development visiting neuro-developmental therapist a specialist in child development who works with very young children. Section 1: Early years At the same time, you may find yourself involved with parent group representatives and people who work across the education and disability sectors. Your relationship with these people may be more consistent, long term and cover a wide range of health, education and disability services. These people might include: BLENNZ teachers or Resource Teachers: Vision qualified teachers who support children and their parents and caregivers, providing general advice, teaching and development support Blind Foundation life skills specialists key workers who support children and their parents and caregivers, providing general advice, counselling and support other Blind Foundation specialists eg, deafblind coordinators and recreation advisors who provide advice and support related to their area of expertise Ngāti Kāpō O Aotearoa national field coordinators specialist support workers who use a kaupapa Māori approach to help children and their whānau to access education, health and disability services Ministry of Education early intervention teachers education sector specialists who provide advice and support related to a child s learning and development other Ministry of Education specialists eg, educational psychologist, physiotherapists and occupational therapists who provide advice and support related to their area of expertise early childhood education and school staff your child s teachers, education support workers and teacher s aides who are there to help your child develop and learn within the early childhood and school environments health professionals from a Ministry of Health child development team. In this book, we refer to the group mentioned above as your child s vision team, as their ongoing support role will help you access all the support you need throughout your child s life. Having to meet so many people in the early days can be overwhelming. My advice is to take them as they come, don t try to remember everyone s names and, remember, they are there to help. Parent It s important to know your child s vision team is there to help you regardless of who they are or which organisation they represent. Their aim is to work as a team to build a strong relationship with you on your journey the vision book How the eye works Understanding how the eye works and how we see is a good first step to understanding your child s vision and the assessment process. To see, three things need to work properly: the eye, the optic nerve (the nerve that takes information from the eye to the brain) and the brain. It takes about six months for babies to develop much of their vision (none of us is born with fully developed vision). In this time they begin to focus, develop eye muscles, learn to scan and track, coordinate their eye movements and see the full range of colour. By the age of seven, most children have developed normal adult vision. Conjunctiva Sclera Iris Pupil Cornea Vitreous Macula Retina Optic Nerve Lens Choroid Share anything you notice about your child s sight with the professionals you meet you know your child best and you will have information that is often invaluable to others outside the home. Section 1: Early years Why a child's vision is assessed How children are assessed Assessments are an important way for you and the people you work with to understand how your child s vision is influencing their overall development. Most blind children will have some degree of vision total blindness is rare. Overall, an assessment will help you to: understand how your child is using vision to gather information about the world share information about your child with family and whānau and others understand how to support your child to develop and grow identify the services and support your child is eligible for and the team of specialists available to support you. The initial assessment will give you some information about what your child can see. But it often takes time to establish the full picture. It might take months, even years, and several assessments to find out the full extent of what your child can see. That is why it is common for specialists to use more than one method to assess a child s vision and why they may want to see your child several times and seek the input of you and others as your child grows and develops. Assessments can involve observation of your child in familiar and unfamiliar settings, note taking, interviewing family and whānau, as well as specialist examinations and tests. It is a good idea to get copies of all assessment reports keep them handy and share them with others. Most assessments include a short report noting the specialist s findings and things that can be done to help your child develop the vision book Types of assessments Generally speaking, there are two main types of vision assessment: clinical assessments and functional assessments. Clinical assessments Clinical assessments usually involve visiting an eye specialist (eg, an ophthalmologist) at hospital. They will: identify what your child likes to look at ask questions to understand your child s medical history examine your child s eyes carry out a clinical vision test (depending on how old your child is). Clinical assessments often lead to a diagnosis and the identification of possible treatments. Clinical vision assessments are typically done: in hospital b
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