Here's the place to post about any resources that you've found useful/helpful along the way.

These can include organisations, websites, support groups and government agencies.

Please note though as per the rules of the forum that you need to avoid naming specific individuals who might not appreciate identification in such a public forum, eg, teachers and people working with your child in a private capacity. Information like this is more appropriately exchanged via PM.

HEART CHILDREN NZ INC

Heart Children NZ Inc have a national website : www.heartchildren.org.nz

Who are they:

Heart Children New Zealand provides care and support to heart kids and their families. From before birth, through surgery, rehabilitation and into the future, they understand how important it is to have a strong support network to fall back on.

Heart Children New Zealand was established in October 1994 and is a national organisation with 20 regional branches and support networks. Heart Children New Zealand is the only organisation that is dedicated solely to providing the support required by children with heart conditions and their families.

There is no organisational link between Heart Children NZ and the National Heart Foundation. They are totally different organisations with totally different aims.

Their mission is to provide and facilitate the best support and care for children with heart conditions and their families within New Zealand.

Services:

This page lists a number of the services they provide - "What they do"

Resources:

Heart Children have a few books that the Family Support Workers can provide free of charge including the following:

Heart Children – a practical handbook for parents of babies and children with heart conditions - Linda Davies and Michelle Mann

Welcome to Holland – New Zealand parents talk about living with a heart child - Lois Tonkin

Knowing but not Knowing – Finding out about your baby’s heart problem before your baby is born – adapted for New Zealand by Heather Spinetto, Paediatric Cardiac Liaison Nurse, Starship Hospital, Auckland

.. and there is also one that can be downloaded from their site that is great for parents to share with teachers and schools - Educating Children With Cardiac Conditions

I also 'found' a couple of great books that can be downloaded - both are American - but a lot of the information inside is great.

The first I found really great with a lot of comprehensive information I wish I'd known when my children were diagnosed. Also has some great resources for use with schools/doctors/specialists etc .. and also covers a lot of situations that as a parent of a Heart Child you may come across ..

Heart and Soul.pdf

Heart & Soul: A guide to congenital heart disease

The Heart & Soul guide is a source of help and reassurance to families whose children have been diagnosed with congenital heart disease. Heart & Soul is a handbook published by the Heart and Stroke Foundation containing in-depth information about congenital heart defects in children.

It's my heart

It's My Heart is a resource book for patients and families affected by congenital heart defects. In plain, understandable language It's My Heart provides descriptions of the types of congenital heart defects and acquired pediatric heart conditions your child may face. Along with explanations of the various tests, surgical procedures, and treatments for CHD's, this book also contains helpful diagrams, a glossary of medical terms, and much, much more. It's My Heart was developed over a number of years by a dedicated group of doctors, nurses and parents in a collaborative effort spearheaded by The Children's Heart Foundation.

Cleft lip and Palate Support NZ
http://www.cleft.org.nz/

They offer support to parents, those cleft affected and those who work alongside them.

WINZ - Child Disability Allowance
http://www.workandincome.govt.nz/individuals/a-z-benefits/child-disability-allowance.html

Child Disability Allowance is a fortnightly payment made to the main carer of a child or young person with a serious disability. It is paid in recognition of the extra care needed for that child. It is not means tested.

You guys are superstars. Thank you for taking all the time and effort you've obviously put into your posts. I'm sure there are loads of people viewing them and finding them helpful.

Wish I had something to contribute, but am so new to this that I can't really recommend anything.

Keep em coming!

Hi all,

Thought I'd post a few links we've been looking at recently. They are of varying degrees of usefulness, but are providing us with some entry-level information. Might be worth a look if you're like us and just starting out:


Childrens autism foundation:
http://www.autism.org.nz/1

Altogether Autism:
http://www.altogetherautism.org.nz/page/autism_76.php

IHC:
http://www.ihc.org.nz/Default.aspx?tabid=268&ctl=ViewIhcDisabilitys&mid=923&ItemID=10

Autism NZ:
http://www.autismnz.org.nz/Branches/Canterbury.php

Ministry of Education's services & funding FAQ:
http://www.minedu.govt.nz/NZEducation/Ed...umDisorder.aspx

---------------------------

Going shopping:

Do2learn:
http://www.do2learn.com/

Little beacons:
http://www.littlebeacons.co.nz/store/

The Sensory Corner:
http://www.sensorycorner.co.nz/

I've just found this very interesting website for families dealing with ASD. Lots of thought-provoking content and stories that some of us may be able to relate to. I think it's connected to Russell Brown (of publicaddress.net) in some way, he seems to feature in many of the posts and responses. Worth a look though the layout needs a little work.

http://humans.org.nz/

Just found this excellent (Australian) website that provides short summaries of the (often bewildering) range of therapies available for ASD children. Well worth a look to get an overall idea of what's out there:

http://raisingchildren.net.au/parents_guide_to_therapies/parents_guide_to_therapies.html

Down-to-earth, plain language website to help parents get involved with their kids education. Explains National Standards and what your children should know for each Year level etc.
www.tworedapples.com

Thank you MrsT (he he I am also a MrsT!) for that tworedapples site. Just the help I need to get my 7 year old up to scratch with maths. Excellent resource.

There is now an online forum specifically for parents of kids with Autistic spectrum disorders.

www.asdparents.forumotion.co.nz

I am hoping it will be a wonderful resource and a great help to people some come along and join in

Hiya,
I joined the forum but I cant post any new topics or reply to any topics as I am not an admin it seems

sorry KC - i know there was a poblem with the intros section which has been fixed. I *think* it should all be working now.

Ok cool,thank you