Family/Whanau Caregivers
This section contains links to many sources of practical and advocacy support for individuals and families. ASDIN makes available a balance of information consistent with our mission statement.
If your support group or organisation wishes to be listed on this site, please contact: asdin@powerlink.co.nz
Raising a child with ASD requires families to cope with all the regular daily care activities, and also the need to work with a range of service organisations, sometimes taking on a "case manager" role. Many other barriers, such as coping with English as a second language, also have to be overcome in order to advocate effectively for a family member with ASD. Balancing the needs of each family member and finding the time, energy and financial resources required to achieve that balance means that parents and caregivers quickly learn that they must be organised, assertive and informed advocates to promote services to meet their children's needs.
Grief
Information about Children and Grief
Text adapted with permission from Life and Loss: A Guide to Help Grieving Children, Breaking the Silence: A Guide To Help Children With Complicated Grief: Suicide, Homicide, AIDS, Violence, and Abuse and Helping The Grieving Child in the School Healing Magazine (Kidspeace) and Growing Up Fast (NES ).
Developmental Considerations Concerning Children's Grief
Useful chart demonstrating developmental (age) considerations concerning children's grief.
The Dougy Center for Grieving Children and Teens
This comprehensive site offers information for adults, adolescent and children. Also and invitation to join the children's grief experts at The Dougy Center for an opportunity to learn the ins and outs of running a successful grief support program.
On Our Own Terms: (Article )
How do children grieve? Like adults, children experience grief physically, emotionally, cognitively, spiritually and behaviorally.
New Zealand Parent Support Links
Autism New Zealand Inc
Autism New Zealand Inc is the national support group for individuals and families with autistic spectrum disorders. Autism NZ provides support, resources and information.Their website provides details for Branches and other contacts. They can be contacted by:
Phone (03) 332 1038
Fax: (03) 332 1024
Email: m.s.whitworth@xtra.co.nz
PO Box 7305, Sydenham, Christchurch, New Zealand.
Cloud 9 Children's Foundation
The Foundation's aim is to provide relevant information on Asperger Syndrome to parents throughout the country. They aim to:
fund key books in all 288 public libraries in New Zealand; encourage research into Asperger Syndrome; promote awareness and engage in community education; campaign for improved educational services; promote regular seminars and workshops to assist with information to professionals, teachers and teacher aides and give mutual support to parents, carers, families, siblings and to children and adults with Asperger Syndrome. They can be contacted by
Email: foundation@entercloud9.com
PO Box 30 979, Lower Hutt, Wellington, New Zealand.
Hotline 04 920 9488 Foundation Coordinator: 04 920 9400
ADHD Association Inc (no website)
This is a support group for parents of children with Attention Deficit Hyperactivity Disorder. They aim to help and support all those involved in the care, upbringing and education of children with ADHD, especially parents. They have an adult support group and can be contacted by:
PO Box 51675 Pakuranga, Auckland.
Physical address: 594a Dominion Rd, Balmoral, Auckland.
Phone: (09) 623 5380
Kia Kaha
Kia Kaha (stand strong) is a no bully programme, a whole schools approach to eliminate bullying. This excellent website has information for kids, parents and teachers.
Preschool Express - Skill Station
A free website by Jean Warren about skill building written for for parents, teachers and grandparents seeking activities to entertain, challenge and enrich the learning experiences of children 2- 6 years of age.
Down Syndrome (Auckland) Association
Approximately 3% of children with Down Syndrome have autism. The Down Syndrome Association offers support to parents or caregivers of children with Down Syndrome.
Parent to Parent New Zealand Incorporated
Parent to Parent provides parents of children with special needs with support and understanding through one to one contact with other parents whose child has a similar disability or health impairment.
They provide parents with information about the disability or health impairment their child has, as well as information on services for children and their families. There are more than 3600 different conditions covered by Parent to Parent ranging from the very common through to the rarest condition. Their service is confidential and free to families.
Parent to Parent New Zealand Inc has local groups throughout New Zealand. Their National Office can be contacted by:
Phone: (07) 834 1108 (07) 834 1153 or 0508 236 236 (toll free).
Email: p2pnational@compuserve.com
Parent and Family Resource Centre, Auckland
This is a place parents can turn to for information when they have a child with special needs. The Parent and Family Resource Centre (PFRC) is a parent driven organisation and is an umbrella organisation for a network of support groups and parents. PFRC is user friendly, accessible and empowers parents by providing information, support, knowledge and skills to enhance the lives of children.
They are located at the corner of Spring and Princes Streets, Onehunga. They can be contacted at:
PO Box 13-385, Onehunga, Auckland.
Phone 09 636-0354 fax: 09 636-0354
Email: welcome@parentandfamily.org.nz
New Zealand Service Providers
Community Living Trust
Community Living Trust exists so that people with pervasive developmental disabilities and their families/whanau have lives just like everyone else. Their philosophy is to design services that are centred on the person and,are therefore, often designed from scratch.
The majority of services they provide are funded by the Ministry of Health and are for people with an intellectual disability or their families/whanau. Some of these services- supporting families, supporting people in a range of living environments, and supporting people to work or to engage in other meaningful activities - are available to people in the Waikato, King Country and Coromandel areas, although the greatest provision is in Hamilton and surrounding areas. Others - behaviour support, physical therapy and speech language therapy - are available, subject to some limitations, to people living in the central North Island. They can be contacted at:
Community Living, 180 Collingwood St, PO Box 292, Hamilton
Phone: (07) 834 3700 Fax (07) 834 3701
Email: enquiries@clt.org.nz
Hohepa
Hohepa Homes was founded in 1956 for the purpose of establishing and maintaining residential homes, schools, workshops, farms and gardens throughout New Zealand for the Curative Education and Social Therapy of children, young persons and adults in need of special care based on the principles of the late Rudolf Steiner Ph. D. Residential care, vocational support and some respite care is available.
Hohepa communities are in Hawkes Bay, Canterbury and Auckland.
Auckland: Email: manager@auck.hohepa.org.nz
IHC
The IHC is a national organisation which supports people with intellectual disabilities.
Their website has information on intellectual disability and sections where you can tell your story or exchange ideas in a forum. You can also
order resources from their library and link to other disability sites. They can be contacted at:
IHC National Office 15th Floor,
Willbank House,
57 Willis St
PO Box 4155
Wellington.
Ignite
Ignite has been set up to support people with disabilities and their families to live independently. Services vary, but could include family support and supported employment and living.
Ignite Waitakere: 184 Lincoln Rd, PO Box, Henderson
Phone (09) 837 0723,
Fax 09 835 3694
Mailto:ignite.waitakere@ihc.org.nz
Ignite New Plymouth: 351 Devon Street West, PO Box 5055, Westown, New Plymouth.
Phone: (06) 759 1791 0800-4 LIFT-OFF 0800-4 54 386
Mailto:ignite.taranaki@ihc.org.nz
Ignite Christchurch: PO Box 1729 1 Shirley Road, Shirley, CHRISTCHURCH
Phone: (03) 385 9065 Fax: 03 385 0081
Mailto:ignite.christchurch@ihc.org.nz
Ignite Wanganui: 118 Liverpool Street, Wanganui
Phone( 06) 347 7962 Fax 06 347 8902
Mailto:ignite.wanganui@ihc.org.nz
Ignite Wellington: Shop 3, 120 Queens Drive, Lower Hutt
Phone: (04) 566 4272 Fax: 04 566 4279
Mailto:ignite.wellington@ihc.org.nz
Spectrum Care Trust- Te Kahukura Atawhai
Provides or facilitates services for people with a disability, their families/whanau and associated organisations to ensure best quality of life and choices. Provides residential care, Community Support Team, Respite Care and Home Support, Cultural Services, Whanau and Pacific Island Services, Work Options and Activities. Contacts are:
Auckland South Community Team Te Roopu Taurima O: PO Box 43245 Mangere 1730
North Community Team ph: (09) 376-6720: PO Box 52076 Kingsland
Mental Health Team: ph: (09) 827-0977
Work Options South: ph: (09) 279-4850 533: Great South Rd, Papatoetoe
Work Options Central: ph: (09) 622-1262: 17a George St, Onehunga
Needs Assessment and Service Co-ordination services
(New Zealand)
Additional Links and Articles of Interest to Families
The ASDIN acknowledges there are numerous excellent resources and articles available to families. The following list is a selection of some of the articles and resources we believe to be of particular interest to families.
Ten Common Roadblocks when beginning a Home Programme This is an article within the National Speech Language Therapy Centre's website, by Sabra Gelfond Ingall, (MA).
How to determine if a treatment really helped. This is an article written by Stephen M. Edelson,( PH.D). It is listed within the website of the Centre for the Study of Autism, Salem, Oregon.
The Advocacy Bug This article, by Derenda Timmons Schubert, (Ph.D.) focuses on siblings and advocacy. It is listed within the Centre for the study of Autism, Salem Oregon.
Urge Whatamanawa
A site for youth with everything you need to know about keeping safe with Drugs, Sex, Stress and other stuff. Includes information and advice from young people on getting help and how to ask for it. Advice on anger, grief loss and stress, aimed at enhancing the health and well being of young people in Aotearoa , New Zealand Urge - Whakamanawa. Urge was the ?Site of the Month - June 2002? - New Zealand iMag Magazine
Stress in UK families conducting intensive home based behavioural intervention for their young child with autism. Richard P. Hastings and Emma Johnson. Journal of Autism and Developmental disorders. Vol.31. No.3.2001. (You will need to access this yourself from a local library - use their interloan service. Or, contact the IHC library)
The economic impact of autism in Britain. Krister Jarbrink, Martin Knapp. In SAGE publications and The National Autistic society. Vol.5 (1) 7-22; 016027 1362-3613 (200103)5:1 (This article is available through the IHC Library Alternatively, you will need to access it through your own local library.)
Centre for the study of Autism.
This link takes you to their "Contents" page.It is full of interesting links. If you scroll down to "Sibling Centre" you will find book reviews,and other helpful information for siblings.
Future Horizons - Autism Materials
Future Horizons is the world leader in autism/Asperger's Syndrome publishing. You will find books, videos, magazines, other links, newsletters and conferences on autism and Asperger's Syndrome here.
Autism Network Resources for Physicians
This site looks at Conventional and Unconventional Interventions including links to an Autism Physician List, interventions and treatment options, diagnostic links and research.
Siblings Site
WEKA (What Everyone Keeps Asking- about disability) asks kids to send in ideas to help develop the Kids site. Go on line to fill in a questionnaire. WEKA also has a library resource that kids can borrow from. The request can be made on-line.
Siblings Australia Inc.
Although this site is not specifically for ASD, it can be helpful to have contact with other siblings who can understand the good and not so good things you feel about being the brother or sister with special needs. On this site you can read about what other kids say, find out about good books to read, find out about other cool links or join an internet discussion group (ask mum or dad to help you check this out first).
KidsHealth
This is a search site divided into three sections for family access (for teens and kids as well) and explains a number of illness etc in user friendly terms. Type in ?autism? to get to user friendly articles on what autism is
The Sibling Project
The Sibling Project was established in 1999, within the Department of Psychological Medicine at the Women's and Children's Hospital, in Adelaide, to develop and co-ordinate services for families, and in particular, brothers and sisters of children with special needs (disability and chronic illness).Young siblings of children with special needs can grow up in a situation that includes considerable stress, often without the understanding, emotional maturity and coping skills to deal with their experiences. For teen siblings there are likely to be a whole range of issues around their own development that may add to their stress. Brothers and sisters make up an important part of the social support network both for parents and a child with special needs and their role often increases in importance as parents age. As adult siblings take on more responsibility they too can benefit by having a support network. It has been shown that well-adjusted siblings are more able to contribute to the quality of life of the person with special needs.
Judging the effectiveness of a treatment: A list of criteria for parents to use to evaluate a child's programme (NZ Author) (Note:This is a PDF file so you will need to open it with Adobe Acrobat and you may be prompted to save the file on your desktop.) Printed with permission from the author.
Wings of Madness
Some good stuff for teens on depressions written in teen language at these sites.
Kids/Sib page Watch this Spot!
Within this ASDIN website we are planning to offer a Kids/Sib page, a forum to which you can contribute sites and links which you consider interesting. It will be particularly focused towards kids and adolescents who have ASD and their siblings.
Remember, if you have a site/link you would like to recommend please contact ASDIN.