Interconnections Worldwide

Working internationally to share information, help build knowledge and support teamwork around babies, children and young people who are disabled, marginalised or vulnerable

The home of Team Around the Child (TAC) and the Multiagency Keyworker

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Oh, for a prime minister who knows about families of disabled children!

 

'But did he then have to dodge behind some psychological barrier so that he could enact the savage cuts in public services...'

Comment by Peter Limbrick: When I worked with families of disabled babies, on very many occasions I observed mothers and fathers (and other close family members) plunged suddenly into very dark places from which most would emerge after some months or years. By this time, after acquiring the painful art (if they did not have it before) of closely observing the workings of their own mind – an art practised perhaps during many long wakeful nights – many parents would observe they were no longer the same person they used to be.

The changes I could observe, or the changes they reported to me, were fundamental. These could include change from having no religious belief to faith (or vice versa), change from a lifestyle prioritising affluence and material acquisitions to one of giving family and friends a much higher value, change from a general low-level prejudice against people with disabilities to a growing acceptance of all forms of difference. (I remember seeing one mother making this conscious attitude shift while nursing her new baby who had Down's  syndrome). If there were two parents, they might both experience these radical transformations or only one of them would – and then be out of synch.

If, like me, you have been to gatherings of families of children with a particular condition or disability, I expect your heart was warmed by the atmosphere of genuine kindness, compassion, helpfulness and conviviality of the people around you. I am not sentimentalising disability here. These gatherings would have discussions about life and death, about family breakdown, about desperation and about financial ruin. But many of these family members have been to places where the rest of us have not been. They know things we do not know. They have a soft embrace for their fellows and case-hardened tools in their survival kits.

Nor am I failing to recognise the valued places disabled children and young people have in families. Parents' first dark places in my experience came from grieving for the perfect baby mixed with deep confusion and intense anxiety about the future.

Very often, long dark nights of fear and grief can produce more rounded human beings; women, men and children who are more fully human; people the world needs more of if we are to reverse the slide into materialism, avarice and perpetual conflict.

Here I can confess to my own mental confusion. I see before me a prime minister who has suffered, who we could see was suffering and who, genuinely, spoke the things that people in the world of childhood disability have heard before from bereaved parents. But did he then have to dodge behind some psychological barrier so that he could enact the savage cuts in public services that his dogma and his party's ideology demanded of him? What happened for goodness sake? What sort of anti-human transformation was this? What are his dark places now?

The coalition's public service cuts, even in this early phase, are socially criminal. We all have to get used now to the ministerial, or executive or managerial shrug of the shoulders when we complain that our child has reduced support at school, that the school leaver must stay at home day after day, that the impoverished family has not enough food and is falling into debt.

What we have to get used to at the same time is that our various impassioned campaigns to get the government to understand the impact of their policies on vulnerable people are falling on deaf ears. Just that. Public service cuts are riding over us like tanks, riding over you and me and our children with all the blind ferocity and brutal determination of a military attack on a rural village. And who is driving the tanks? Men in very shiny suits who are yet to learn how to be fully human – who have not yet grown into the sort of people the world needs – who have not yet learned from their own dark places.

This is my dark time as I watch the suffering and premature deaths of very vulnerable people. Perhaps it is your dark time too. Perhaps, like me, you have looked for a full-grown being inside our prime minister and have not seen one. Perhaps, like me, you see only very expensive clothes, hear polished platitudes and smell the cruelty and cowardice of the playground bully exploiting the weakest child.

Positive Partnerships 2012 in Australia

Positive Partnerships is pleased to announce the continued commitment by the Australian Government through the Department of Education, Employment and Workplace Relations (DEEWR) of funding for phase two of Positive Partnerships (2012 – 2015).

Positive Partnerships will be delivered by Partnerships between Education and the Autism Community (PEAC).This is a national consortium comprising Autism Spectrum Australia (Aspect) as the lead agency, Autism Queensland, Autism SA and Flinders University SA.

Our focus will be to build upon the successful outcomes of the past four years, and to ensure the continuation of high quality Positive Partnerships' workshop delivery, materials and practical resources.

The 2012-15 Positive Partnership Program will:

  • Continue to provide workshops to parents/carers, giving participants the tools to form mutually beneficial partnerships with their children's school.
  • Create an "autism friendly" culture in schools by training more teachers, school leaders and other education professionals about how to best support students with autism in the classroom.
  • Increase autism support and training in regional/rural areas, through workshops and online materials.

Extract  from: http://www.autismtraining.com.au/public/index.cfm

 

 

  

Raising Children Network - The Australian Parenting Website

When you find out your child has a disability, you might feel emotionally overwhelmed. This won't always be the case, however, and there are some effective ways to manage your feelings in the meantime. 

This extract is from http://raisingchildren.net.au/articles/disabilities_your_feelings.html

Your feelings: what to expect

Every parent is different. But after a diagnosis of disability, it's very common for parents to feel:

  • confused and overwhelmed
  • shocked
  • disbelieving or numb
  • denial.

A whole range of feelings is normal. As parents get used to the situation, they may feel sad, especially when thinking about their disappointed hopes and dreams for their child and themselves. There can be feelings of blame – directed towards themselves and other people – as well as fear about the future. Parents may also feel confused and overloaded, with too much information, not enough information, sometimes conflicting advice and pressure to make decisions. 

Parents' feelings can be influenced by how their child's condition affects other aspects of their lives – it could have an impact on their work, social life, or even the amount of time they can spend on personal interests or hobbies. As with any family, the amount of support parents have from others, such as their partner, family and friends, also affects how they feel. For example, lots of encouraging support will help a parent feel more positive about their new role. 

When parents finally get a diagnosis of their child's condition, many often feel a level of relief because it allows them to move on and find help. This relief can come from knowing that the earlier the diagnosis is made, the sooner they can begin to find appropriate help, support or services. 

There's no 'right' way to feel. You can't prevent your feelings, and you shouldn't try. Dealing with your feelings is part of coming to terms with the diagnosis and moving on with your life, your child's life and your family's life.

Click here for the website. 

 

Parent to Parent New Zealand

Welcome, Haere Mai

Matua ki te Matua (Parent to Parent) seeks to support, educate and empower families who have a child or family member with disabilities, health impairments or special needs. As our name implies, we aspire to capture the essence of experiences, strengths, and hopes of parents supporting parents. 

Click here for more information: http://www.parent2parent.org.nz/

share your information  Cartoon © Martina Jirankova-Limbrick 2011