Events and Stories - Very Special Kids

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Special Lives June 2008 edition

Maree Inggall vividly recalls the sense of shock and disbelief she and husband Stephen felt when they were told their toddler, Jackson, had a life-threatening condition called Spinal Muscular Atrophy (SMA). The diagnosis of SMA, a rare genetic condition that affects cells in the spinal column, meant Jackson would never walk and his muscle control would worsen over time.

“Once upon a time Jackson could sit up unaided, but now he can’t,” Maree explains. “He is getting weaker and has scoliosis that is progressing. The SMA also affects his ability to swallow and he is losing weight.” Now, aged seven, Jackson uses an electric wheelchair to get around and relies on his family for help with things like rolling him over in bed or keeping his head up straight. “We try to make his life as normal as possible,” said Maree. “I suppose from the outside looking in it might seem as though we cope, but it’s difficult. Knowing Very Special Kids is there really helps.” Over the years the Inggalls have kept in regular contact with their Very Special Kids Family Support Worker and have met other families through Very Special Kids activities such as Mother’s Group and the Family Christmas Party. Jackson sometimes stays at the children’s hospice, Very Special Kids House, giving Stephen and Maree a chance to catch up on sleep and spend time with their other children. “It’s Jackson’s chance to have a sleepover. He really loves it,” said Maree. Older brother, Mitchell (age 9) also receives special attention, going to sibling days at Very Special Kids. Sibling day is a way to thank Mitchell for everything he does for Jackson. “Mitchell is Jackson’s arms and legs. They have such a special bond. Often Jackson won’t have to say anything – Mitchell just knows what he needs,” said Maree. The family has a tough year ahead of them, with Jackson needing to have an operation to try to relieve some of the pressure the scoliosis is placing on his internal organs. “That’s going to be a big thing to get through, so we’re planning a trip to Disneyland beforehand to give Jackson something fun to look forward to. “It’s good to know that our Family Support Worker will be there if we need to talk and Jackson can look forward to another stay at Very Special Kids House later this year,” Maree said. Our family support workers are the main point of contact for more than 800 families who rely on Very Special Kids. They provide counselling and support, facilitate access to special camps, sibling days and family events and link families in with a range of services and support networks. Meet Camille and Peggy, two members of this amazing team! Camille, what attracted you to working with Very Special Kids? I saw it as new, meaningful and challenging. That and I love working with families and kids especially. What is the hardest part of your job? Observing first hand the real impact that caring for a child with additional needs has on the entire family. Knowing that what we do means so much to families, but that realistically it’s a drop in the ocean. I can never understand why families who face so much have to battle so hard every inch of the way. How do you describe your role to friends? There are different versions depending on the day. What’s the best thing about working with Very Special Kids? Getting to meet remarkable parents and kids who remind you what’s really important in life. I also love that as the Sibling Day Coordinator I officially get to be a big kid at least 6 times a year. I’ve been a wizard, a spy, a monsterbuster, an inventor, a laughter technician, a hero, a pirate, a toymaker, a pumpkin farmer, an elite plumber and possibly my most favourite – a borborologist. Coming to work each day with a great team of people who support each other and believe in what we’re doing also helps. What do you do outside of work? Spending time with my family, and playing with my nephews helps balance my view of the world which is really important. Good friends, food and wine are mandatory. Is this the bit where I should add I love water sports? Peggy, how did you come to work at Very Special Kids? I was interested in becoming involved in an area of work where I felt I could make a difference in people’s lives and I wanted to work locally, close to where I live. I also wanted to learn more about paediatric palliative care and I certainly have achieved that. Describe an average day No day is average! I might find myself driving through the country for hours to visit a family or to run a Coffee Morning for parents. Sometimes I might be doing a therapy session with a child, talking and drawing and always being surprised by the way they get through such difficult times in their lives. It is not unusual to get sad news on any given day. Sometimes phone calls go for a long time. What is different about working for Very Special Kids? It is a huge privilege and a challenge to reach out to families who live remotely and to try to respond to their needs effectively. The other difference is the highly emotional zone you are working in on a daily basis. What is your favorite part of your job? I love developing different programs that respond to the needs of the families who are all part of Very Special Kids and I love seeing the fun that families have at the Adventure Park Family Fun Day. It is so good to see children laughing and to watch parents relax even if it is just for the day. What have you learned from working with families? I have learned that families who are under enormous pressure and emotional stress, who have had their sense of control over their lives upended, are endlessly resourceful, patient, loving and committed to their children. I am in awe of their strength in the face of such demanding situations. How do you unwind after work? I walk on the beach.

Special Lives March 2008 edition

Fiona Forrest certainly has her hands full. A single mum of four - Anthony (17), Cody (15), Jasmine (9) and Josh (7), she juggles a busy schedule of swimming lessons, dance classes and many other after school activities while also caring for Anthony, who was born with cerebral palsy. Anthony has been in a wheelchair all his life and suffers from severe scoliosis and osteoporosis. Although Anthony lives with constant pain, he has a cheeky smile and a dry sense of humour. “Anthony might not be able to speak, but I just know when he is happy and I can tell that, like most boys his age, he has quite a sarcastic sense of humour,” Fiona said. Anthony stays at Very Special Kids House for two to three nights, a couple of times a year, giving him a stimulating environment and allowing Fiona to spend more time with her other children.

“Jasmine does a lot of ballet and dance so I try to time Anthony’s stays at the House with her concerts. That way I can be backstage for Jas, helping her with her costume changes and watching her perform,” explains Fiona. Like many parents who have a child with high care needs, Fiona was reluctant at first to leave Anthony at Very Special Kids House. “I’d looked at other places and didn’t get a very good vibe but coming in here, it was like ‘yay, this is the sort of place that Anthony would enjoy’ and he does,” she said. Having an older brother who is often unwell and requires constant care is not always easy for the other children. Josh and Jasmine both attend sibling days at Very Special Kids. “They went to every sibling day last year,” said Fiona. “I think they really enjoy hanging around with other kids who know what they’re going through.” Fiona also thinks it would be worthwhile for Cody to get involved with some of the adolescent activities at Very Special Kids this year. “He got into a fight at school last year with a boy who made fun of a photo of Anthony that is on Cody’s phone. Even though Cody was defending his brother, he knows that’s not how he should deal with it.” Even from an early age, her children have understood the fragility of Anthony’s health. “The kids know that if they have a cold, they can’t go near Anthony,” Fiona said. “They know that if Anthony gets a cold, it might become pneumonia and that would be very serious for him, so they have to keep away and just blow him a kiss from the door. “I’m so proud that we’ve got Anthony to this stage (turning 18),” she said. “He’s a real fighter. We’ve been told so many times that he isn’t going to make it.” Fiona is already planning how they will mark the milestone later this year. “It’s going to be a big celebration,” she said, although the celebration will be bittersweet. As an adult, Anthony will no longer be a patient with the Royal Children’s Hospital or part of Very Special Kids. “But we are so lucky to still have Anthony,” Fiona said. Meet the team Our children’s hospice, Very Special Kids House, provides 24 hour nursing care for children who have a life-threatening illness and complex care needs. The House is staffed by registered nurses and trained carers like Carly and Catherine. Carly, how did you come to work at Very Special Kids House? It was quite by chance. I did a few casual shifts at the House through an agency then a full time position came up and Gail (the hospice manager) offered me the role. What do you do? Although we provide medical care, Very Special Kids House is also about providing a home away from home for the children, so we create a special environment with massages, outings and music therapy. In terms of technical skills, staff need to be able to administer different medications and know what those medications do and we need to have experience with things like nasogastric tubes, cathertisation and tracheostomies. Seizure management is a big part of the role. What is different about working at Very Special Kids House? You get to know the kids well, so you become really good at assessing their changing needs. We can pick up quite quickly if something is wrong or if their condition is worsening. It’s also such a beautiful place – coming to the House never feels like work! What is your favourite thing about the House? I love our sing-alongs in music therapy. Music has such an amazing effect on the kids. It transcends their disabilities. I’ll never forget being with one child who was in the advanced stages of her illness and had lost all mobility. She could barely move an inch, but we watched as she lifted her hand to touch the chimes. It was incredible. What have you learned from working at Very Special Kids? To appreciate the little things. Every day when I come to work I am reminded of how wonderful children are and the joy they bring to our lives. How do you unwind after work? I play with my two little girls who are 4 and 2 ½. What attracted you to working with Very Special Kids? My school painted a mural at the House and I’ve really wanted to work there ever since. What do you do? Some of the work is quite technical, like doing chest physio and suctioning but we also bathe the kids and take them for outings. A big part of the job is just making the kids smile. How do your friends react when you tell them you work at Very Special Kids? I think it’s the same for most staff – my friends say: “How do you do it?” because they assume it must be very hard. It is challenging, but what they don’t understand is how rewarding my work can be and the great support I get from my colleagues. What’s the best thing about working at the House? When you know you’ve made a child comfortable. There are times when you see a child struggle for every breath. If you are able to reposition them so they are more settled and comfortable, it’s the most amazing thing. What do you do outside of work? A lot of travel at the moment! My fiancé lives on a farm at Port Fairy so I’m back and forth all the time. And I’m studying, of course! I hope to do my grad year at the Royal Children’s Hospital. I’ve definitely decided to pursue paediatric palliative care when I graduate. Old-school fun in Gippsland Panning for gold, a scavenger hunt and an afternoon tea of scones and cream in a shearing shed was just some of the old-fashioned fun families got up to when our Traralgon office put on a family day at Gippsland Heritage Park in January Open to all local families supported by Very Special Kids, the family fun days are a free day of games and activities organised by each of our offices across Victoria. Thanks to the support of the Commonwealth Bank of Australia Staff Social and Charity Community Fund, we are able to give families the chance to get together in a social setting to enjoy lunch and a family-friendly day out. The kids had a ball exploring the historic buildings and artefacts before lining up for fire engine rides. Although the afternoon of gold prospecting failed to uncover a fortune, a fantastic time was had by all. A big thank you to Heritage Park staff and volunteers for putting on such a brilliant day. Teeing up for the kids Hosted by media personality Michael Christian, the 2007 Gearbulk Very Special Kids Pro Am was held at the prestigious Sandhurst Club on Wednesday 28 November. The Pro Am provides a rare opportunity for guests to play alongside leading Victorian golf professionals at a championship course, while supporting families in their community. A field of 25 corporate teams participated on the day with each team playing alongside professionals who were competing for a prize purse of $10,000 as part of the Victorian PGA Tour. The event was a great success raising $40,000 for Very Special Kids. Congratulations to the Australian Unity team who took out the corporate trophy (featured). Many thanks to the Victorian PGA for their ongoing support and the event sponsors Australian Unity, Commonwealth Bank of Australia, Re-Creation Armadale, AXA, Lexus of Brighton, East Malvern Community Bank and Box Stallion Wines. An inspiring letter Every so often, Very Special Kids receives a letter that's too good not to share. We thought you might enjoy reading this letter from 14 year old Suresan who was moved to donate to Very Special Kids after a bout of chicken pox.

Special Lives Summer 2007/08 edition

Looking back over 2007, Cara Scott describes it as a really good year. Although her son, James still struggled most nights with breathing difficulties and was sick at times, taking weeks to recover, he was not hospitalised this year. When James was just 11 weeks old, his parents Bill and Cara were given the devastating news that he had suffered a stroke in utero leaving him with cerebral palsy – a form of brain damage that causes chronic lack of muscle control and coordination. Just as Bill and Cara were coming to terms with the diagnosis and what it would mean for his future, James fell seriously ill. By the time he turned one, James had started to choke when he was feeding. He aspirated milk into his lungs and developed pneumonia. Now, aged six, James has only had two ‘good’ years in his short life that have not involved multiple hospital stays. “Getting sick, having to be in hospital – all of the medical issues are so much more intense than the actual disability,” explains Cara. “All things considered, this was a really good year for us.” James reached some major milestones this year. He had his first stay at Very Special Kids House without Bill and Cara and his siblings Lucy (eight) and Oliver (20 months) staying in the adjoining parent accommodation. He also started school, attending classes four days a week with teaching staff who are specially trained to engage children with disabilities through sound and light stimulation and other tactile play. “That was a really big step,” said Cara. “But he handled it much better than I expected. He just loves going to school. “We’ve noticed a real change in him this year,” she continues. “And the staff here at Very Special Kids House have noticed a real change in James too. Just like any other child, you see them change when they go to school. They just grow up.” James’ older sister, Lucy, has made strong progress of her own recently, coming to terms with her brother’s disability. “Lucy has always been great with James but she did go through a real stage of ‘it’s not fair’,” explains Cara. “She’d say: ‘I wish James could play with me’ or ‘I wish James could talk to me’ but now she’s OK with it. When Oliver came along it seemed to change everything. She’s not regretting anything or wishing things could be different anymore.” Cara believes Lucy’s involvement in the Very Special Kids sibling program and spending time with volunteer, Karen, has also helped Lucy come to terms with things. “Without her actually saying it, I think that Sibling Day has made a huge difference for Lucy, having the opportunity to meet other kids and know they’re in the same situation.” The Scott family are now looking forward to a relaxing Christmas followed by a short break together on the coast. “Our Christmas routine starts in November with the Fair (at Very Special Kids) and the Family Christmas Party,” said Cara. “We go every year and wouldn’t miss it.” Christmas is a special time for the Scotts. “We love Christmas! We always go for a drive to see the Christmas lights. Christmas morning is usually crazy at our house. We’re all up early and there’s Christmas music playing and presents and lots of fun.” When asked what might be on her family’s wish list for Christmas, Cara laughs. “I think Oliver would like something he can throw!” she says, “or at least something ‘Thomas’ – he loves trains and trucks and things like that. “Lucy wants an iPod and some lipstick (which she won’t be getting because she’s only eight!) and James will be happy with anything that makes noise or some stories. He loves being read to. So, maybe some books or a new CD.” In terms of her own Christmas wish, Cara responds with something many parents can relate to. “I think I’d be happy with a good night’s sleep!” she said. Kicking off in style at the Footy Fever Debate Once again this year, we launched the Piggy Bank Appeal with the Footy Fever Debate, an event that is fast becoming a fixture on the football calendar, attracting high calibre players and coaches who conduct a lively debate before a full house in the Member’s Dining Room of the MCG. Hosted by Ian Cover of Coodabeen Champions, the hilarious 2007 Footy Fever Debate ‘HANGING UP THE BOOTS – are players equipped for life after footy?’ looked at what happens when the football dream is over, and whether players are prepared for when it’s all taken away. Chief Football Writer for The Age, Caroline Wilson; ex Carlton Coach, Denis Pagan and Geelong legend Barry Stoneham argued that players are not really prepared for life after they hang up the boots. Arguing that players are prepared for life after footy was Melbourne Football Club President, Paul Gardner; General Manager – Player Development, AFL Players’ Association, Steve Alessio and recently retired Western Bulldogs player Luke Darcy. Vega 91.5fm’s Wilbur Wilde decided, via audience applause, that, like a good close footy match, it was a draw!! The event is an important fundraiser for the Piggy Bank Appeal and this year raised more than $125,000 to kick off the Appeal. A highlight of this year’s event was the Very Special Break pledge program, which invited guests to pledge $800 to cover the cost of one night at Very Special Kids House for a seriously ill child. The program was extremely successful, raising enough funds to cover more than 50 nights at Very Special Kids House – giving those families a ‘very special break’ and a good night’s sleep. Moving making madness! When a would-be film maker set out to capture ‘The Sibling Experience: The Reel Story’ little did she know how challenging it would be. After an unsuccessful first attempt, she called on the siblings of some very special kids to help her out during our Sibling Days in October. Over the course of two weeks our film maker was able to tap into the individual stories and creative genius of 50 siblings, who had no trouble in giving the scoop on what it’s like living with a brother or sister with a life-threatening condition. With the help of a screen test and some fundamental storyboarding techniques in the pre-production phase, a great documentary was created. No doubt there’ll be a few scenes that hit the cutting room floor in the final edit. What is indelibly printed on film though is what each of these kids recognise as something ‘great’ about themselves, as well as some candid and insightful tips for other siblings who may be going through something similar. And that’s a wrap! A place for smiles We had a great response to Lord Somers Camp again this year with 16 families enjoying a weekend away. The camp is an opportunity for families to relax and have time out with other families who can relate to the roller coaster of life with a seriously ill child. Our theme this year was ‘A Day at the Zoo’ so there were quite a few animal antics going on! While the kids enjoyed the fun and games, the parents took advantage of the massage and pampering on offer. A Reflections session on Sunday provides an opportunity for parents, children and Lord Somers Camp Staff to reflect on their experience of being at camp. This is often quite an emotional time, as people share their perception of what the Somers’ Spirit is really all about. Some ideas expressed included a place for smiles, acceptance, the generosity of those putting the camp on, and the honour felt by staff in sharing a small part of the families’ and children’s lives. A Fair to Remember The 10th Birthday presentation of our annual community fair was staged on Saturday 17 November and what a party it was! With the support of our many Friends’ volunteers the day was truly special, raising just over $90,000 for Very Special Kids, an outcome only achievable by the generosity of many individuals and organisations from our community. The day was in all respects a resounding success, with beautiful weather, a happy and generous crowd and a wonderful sense of community amongst our hundreds of volunteers and visitors. The Fair encapsulates Very Special Kids’ purpose, vision and values by bringing together all areas of our organisation including staff, volunteers, corporate supporters and many of our family networks to create a brilliant event. A big thank you to everyone who ensured it was once again A Fair to Remember. Autumn Art Exhibition Don’t miss our fantastic Autumn Art Exhibition, held at Very Special Kids over three days from Friday 11 April to Sunday 13 April 2008. The Friends’ Gallery will present an eclectic array of artwork across all mediums from sculpture to works in watercolours and oil. This year’s exhibition will be officially opened by legendary chef and artist Peter Russell-Clarke who will have a select number of pieces available for purchase at the exhibition. For more information, please contact Very Special Kids reception on 9804 6222.