Inside this issue: - HeartKids SA

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HeartKids Family Support HeartKids Family Support Hi everyone, My name is Deb Likouras, and I am HeartKids SA’s newest Family Support Coordinator. I am married to Angelo, and I have two children, Elias who is almost 4, and Suzannah who is 18 months old. Suzannah is our precious Heart Kid. She has had a tough start to life, arriving 8 weeks early and having a number of health issues, including congenital heart disease. Suzannah has Noonan Syndrome, and has been to Melbourne for a cardiac catheter. She was also completely tube fed until February this year, so it has been a challenging, but rewarding journey. I am a social worker and have worked predominantly with young people who are in alternative care, juvenile detention, or homeless. The Family Support Coordinator role is a very different one for me, but is something I am passionate about and know I will really enjoy. It has been really exciting to have met many Heart Kid families during my first couple of months here - everyone has been so welcoming, supportive and helpful! It was excellent to go along to the Mother’s Day Breakfast and the Playgroups where I’ve met so many amazing Mums, Dads and Heart Kids - I look forward to meeting many more as time goes by! I am also really excited about the roll out of our new “Heart Beads” program across the WCH and FMC. More info to follow soon... At this stage I will be at the Women’s and Children’s Hospital during out-patient cardiology clinics on Tuesdays, Friday mornings and every second Thursday afternoon. On the 1st and 3rd Thursday’s of each month I will be at Flinders Medical Centre in the paediatric clinic where the cardiology clinic is held. Please feel free to give me a call if you will be at one of these clinics. I would love to catch up for a chat or a coffee, and to provide support to families where I can. I am also available to visit you or your family if you are ever staying in one of the hospitals. I hope to see you soon! Deb Likouras Family Support Coordinator 0451 126 766 CareBags CareBags In June a wonderful group of volunteers come into the HKSA office for a working bee to put together CareBags for families travelling to Melbourne for surgery. A lot of behind the scenes work was done prior to this so that the bags could be filled with a variety of items to help our families during their time in Melbourne. Special thanks to Prisca Harrison, Rachael Martini, Karen Horsell, Natalie Halls-Jones, Beck Blunn, Stacey & Malcolm Wright, Jill McNair, Bronny Maywald, Kylie-Ann Lane, Terissa Lane, Sharyn Lane, Betty Peng Wang, Emma Kerr and all those involved in this special project. The CareBags will be launched soon – stay tuned! Anniversaries Anniversaries We are thinking of all families whose loved one’s anniversary falls at this time, including the following heart angels: Hayden James Ebony-Rose Connor Gore Remembering Our Heart Angels Remembering Our Heart Angels We send our thoughts and prayers to the families who are grieving the loss of a heart child, especially, at this time, the family of Elle Hillman 27.03.2007 – 31.03.2011 An invitation to the families of our treasured Heart Angels. Please join us in remembering these precious children and celebrate their lives together. Morning tea is held each month. Please contact Deb on 0451 126 766 for more details. 6
Siblings Australia Siblings Australia As a parent of a child with a heart condition, it can be difficult juggling the needs of all members of your family. You may be dealing with a range of mixed emotions about what is happening. And it is likely that the brothers and sisters of your child with special needs will also have a mix of feelings and experiences. The benefits of support If you are able to support siblings they are likely to develop stronger self-esteem, and feel more able to deal with any challenges that come their way. They are also likely to develop a stronger relationship with the child with special needs. In fact, family relationships in general are likely to be stronger. Concerns of siblings Brothers and sisters of children with special needs with chronic illness may face a number of challenges. As a result they may: • Lack understanding about the illness • Develop various fears and anxieties • Feel isolated and confused • Feel resentment if a brother or sister receives more attention or is allowed to behave in ways they’re not • Experience shame about any negative feelings • Feel they need to achieve, to be the ‘good child’ • Feel guilt over their own health and abilities • Feel like they have extra responsibilities How might these concerns affect my children? If your children don’t have a chance to talk about their concerns, their feelings may turn inward leading to withdrawal, anxiety, or lowered self-esteem. Your children may ‘act out’ their feelings with aggression and attention seeking. They might develop sleep problems or physical complaints. They may also have social difficulties. Siblings need: • Information about the illness • To feel listened to and understood • Opportunities to express a mix of feelings • To feel special themselves • To feel competent and valued • Not too much responsibility • Strategies to deal with difficult situations • Contact with siblings in a similar situation • Social support Most children will cope better with stress if they feel listened to, understood and supported by caring adults. How can I help my children? Many factors affect how a sibling adjusts. However, children’s reactions are most influenced by the responses of people around them, especially you as a parent. In order to support your children try to: • Find support for yourself- both emotional and practical • Give children information about the illness • Listen to your children and acknowledge their feelings • Set an example by showing it is ok to share difficult feelings • Watch for behaviour that might indicate stress • Help them learn skills to deal with difficult situations • Enable each child to feel special, spend ‘one-onone’ time with them. • Acknowledge their contributions to household activities but avoid giving them too much responsibility • Encourage children to have contact with siblings in other families. Help them take part in a sibling group or join an internet forum through Siblings Australia • Read books about sibling concerns – there are a number on our website, including books for children Kate Strohm About Siblings Australia Siblings Australia is the only organization in Australia to focus on siblings of children with disability or chronic illness. They run workshops for siblings, parents and service providers all around Australia and overseas, and have developed a range of resources and services. Further information about Siblings Australia can be found on their website (www.siblingsaustralia.org. au) and Facebook page, or by contacting Kate Strohm kate@siblingsaustralia.org.au / 0408720558. Siblings Workshops If you would like HeartKids SA to host a Siblings Australia workshop and you would like to attend, please contact Sheree on 8332 2901 or sheree@ heartkids.org.au 7
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Page 9 and 10: Regional News Regional News Pt Linc
Page 11 and 12: Alex Hudswell’s India Alex Hudswe
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Page 19 and 20: “White Paper” Recommendations T

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