Welcome to ‘What I’d Like You To Know About Me!’
First of all, why such a resource? How much more time will something like this resource take out of an already too full day, coping with not only the needs of your child with a disability, but those of every member of your family?
Well, we have spent countless hours with families, listening to them tell us how many times they have had to repeat their child’s history, their disability, their support needs, their milestones to doctors and nurses, to teachers and support staff, to the physio and the occupational therapist, to the dentist and the optician, and the list goes on.
It was through consultation with families across South Australia that the resource took shape and form into this website. We believe that by controlling how your child's life story is told and what is told to others, you can influence the way that others see and support your child. And you won’t have to keep repeating yourself!
This resource is designed for use by families of children and young people with disabilities, the young people themselves, or those working with these children and their families.
The resource will assist families to record information about their child, which can be shared with those who provide care or services to their child, family and friends.
The resource has been developed with significant input from families of children and young people with disabilities and service providers who work with children. Throughout the resource you will find information written by family members in the form of quotes, tips and stories. This information is to help you think about your child* and the way that you want others to see him or her.
This resource has a focus on the positive and while it provides pages to write down information about your child’s support needs it also has a very strong focus on skills and abilities with many of the pages linked to the ways that you (parents, carers, family members, the children and young people themselves and service providers) provide positive support to your child. You control the information that is entered into the pages and therefore you can have either a positive or negative impact on how others see your child!
* Note: the term “your child” has been used throughout the resource, this might also mean the child in your care, your relative or the child you are working with.
This website is divided into three age group categories, each of which has its own style and backgrounds to choose from. This is based on the following age groups 0-6, 6-12, 12-18. Each part of the website has its own "look" to ensure it is relevant and captivating for the age group.
This web-site resource will assist you to create a book about your child. You will be able to write down information about your child under different headings that are relevant to them. You can then print these pages to make a book and use it when your child interacts with others such as their teacher, baby sitter, service provider (for example at respite, disability services or therapy services). The resource is designed for primarily for families and those working with children and young people with disabilities.
We have included many different pages (A page is simply an area in the resource into which you can enter information about a particular topic). It has spaces for you to fill in and an area to add your child's photo. It brings together the information that you type in and creates a page that you can print out. Each page has a title which explains the kind of information that you can type on that page. Pages are divided up into the following categories: Introducing me!, my world, skills and abilities, this is what you need to know to support me, my emotions, medical and health information, staying safe and pages for specific environments. In each category are a range of pages that cover information about specific topics. For example in the category Introducing Me!, you select one or many pages from the following: Introducing me!, my life so far, what's been happening in my life, who I live with, my communication, my favourite things, daily routine, proud achievements, my abilities and strengths.
When you select a page you can then write down the information that is relevant to your child, each page you use will become a page in your child's book. You will be able to control both the exact content of this information and choose layouts and backgrounds that will make the book interesting to the reader.
Here are some things that other parents have said about their child with a disability. It might get you in the swing of thinking in the positive!
She is a gorgeous little girl. She is unique. Her big sister, calls her baby sister. Her sibling loves to have cuddles and include her in activities with her such as special shows ‘Something on Saturday’ etc. Friends see her as very determined and kissable. Other people like to see her out and about and comment on her growing up. One particular friend likes to see her in her swing and little car, as she looks so grown up and proud of herself.
It’s a cliché. Where does one start when one talks about someone they adore so completely. It would be easier for me to write about the things I don’t like about my child because they are quantifiable, few and quite easy to sum up (well at the moment when she’s only 3 ½ and toilet training). There are just so many good things about my youngest daughter with Down’s, in exactly the same way there are so many good things about my oldest daughter. She is gorgeous to look at, kiss and hold, she is funny and a great entertainer, she loves to dance and read books (in a 3 year old kind of way of flipping through the pages), she loves music and she loves people. She loves her dolls and her teddies and she loves tea parties and helping her dad cook, she loves water, she loves yoghurt and ice-cream and vegemite on toast. She loves the swing and sandpit and her bike. She loves TV and particularly The Wiggles and Hi 5. She’s trying really hard to talk and understands a huge amount more than she can convey. She signs and gabbles away. But the words are coming. She call’s out Mum as loudly and as often as any kid. She knows her colours and shapes and can sort of draw a circle. She can even recognise a few words. She can sort out basic puzzles and loves painting. She’s just a kid like any other, it just takes her longer and some things never quite make it into her head.
My child was originally expected to be unable to do much of anything. She was forecast to be unable to function much in any way, largely exist as a non-responsive non-capable person completely dependent on 100% support.
She is now walking and running unaided (even if slowly), can jump unassisted (even if only to a low height), attends regular school, has a mischievous sense of humour, a fierce determination and will, and an ability to draw others into her world.
“Most (people) express amazement at her achievements and are drawn in by her cute presentation and sense of humour and mischief.”
He is very intelligent. He knows computers inside and out. He is very polite and charming. He has the most beautiful skin, blue eyes and gorgeous curly hair. He has achieved a lot over the last couple of years, especially with regard to his being able to communicate what stresses him and has learnt how to withdraw himself from uncomfortable situation before he reaches the melt down stage, this is a huge thing for him to be able to do. He is a fantastic artist and I am sure one day that he will use his drawing skills to impress the world!!
“She’ll make me a cuppa – very helpful around the house”
“He is loving, very friendly, loves to have a chat. Cares very deeply about his friends, often worries about them when they are sick and hurt. Very clever and curious about how things work. They think that he would make a great inventor as he is always coming up with ideas for innovative products”.
“Most people say they just ‘love him to bits!” He is good at organising things, drawing plans, working, tidying, computers”.
“Funny, engaging, pretty, annoying, stubborn, cute, focussed and generally just great”.
“She’s got a heart of gold, has empathy and is caring”.
“He’s quiet, a deep thinker, can see the funny side of things”