Deb’s story – why I didn’t make my son’s limb difference a big deal

KnittingDeb’s first experience of limb difference came when her son was born 40 years ago. Deb’s son was born with part of his left arm missing below the elbow due to Amniotic Band Syndrome.

Deb’s story is not dissimilar to many Thrive readers and she has kindly shared her experiences of being a mother, during a time when access to limb difference information and support was not readily available. Deb’s approach to her son’s limb difference was one of treating it as a “non-issue, but backed up with support” which has led to the development of a man who is “resilient, confident and successful”.

Deb is the mother of three grown children, and the proud grandmother of two children with a third expected later this year.  Deb also loves knitting, and relishes in the opportunity to craft beautiful personalised blankets for her grandchildren.

Deb has worked with parents, children and healthcare providers throughout her professional careers.  Initially Deb trained and worked for many years as a primary school teacher, but had a career change into the field of psychology 20 years ago.  “After many years of teaching I decided to go back to University and study for an undergraduate degree and then a Masters in Psychology, something that I did over nine years and while the kids were teenagers,” explained Deb.  This led to working in the field, and Deb is now a Clinical Practice Counsellor who trains others.

Deb lives just outside of Brisbane on a large property where all of her children, except her son who now lives and works overseas as a software programmer, have houses.  “Ït’s wonderful to live so close to my family, be part of their lives and spend time with my grandchildren,” enthused Deb.

Deb’s son was born in the 1970s, a time when ultrasounds were not conducted during pregnancies.  This meant that Deb only became aware of her son’s limb difference immediately after his birth.

“He was my first child, but somehow I knew at six weeks that something wasn’t quite right,” explained Deb. While Deb wanted to have a home birth, because of this ‘feeling’, she opted to give birth in hospital.  When Deb’s son was born and he was handed to her she instantly noticed that part of his left arm and hand were missing, and realised that this must have been why she felt that this pregnancy was “different” to what she expected of pregnancy.  Deb immediately said to the doctor “he doesn’t have a hand” to which he replied “but he has the face of an angel”.  Deb feels that there couldn’t have been a more gentle and supportive approach than what her doctor provided at that time.

Because Deb had felt that something was “not quite right” during her pregnancy, the fact that her son was born with a limb difference gave her a sense of relief that he hadn’t been born with a more serious condition.  Deb thought “well if he only has a missing hand, then that is something we can deal with”.  Deb was so calm over the coming days that the medical staff felt that she was not coping and therefore should be seen by a psychiatrist, but as Deb didn’t feel that necessary she opted not to receive psychiatric support and headed home with her beautiful new baby son.

Deb doesn’t deny that she felt some grief, sadness and worries afterwards.  “Will he be able to ride a bike, will he be able to swim and how will he tie shoelaces were some of the concerns I had in the early months,” recalled Deb.  However, with positive support from family and friends, many of whom were also pregnant or who had recently had their first babies at the time, enabled Deb to “just get on with it”.

“The most important thing for me was to ensure that my son had a really positive home environment, filled with people who would support him and take cues from us to treat his limb difference as a ‘non-issue’,” explained Deb.

Indeed, it was such a non-issue with Deb that when her daughter was born she felt that the fact her baby daughter had both hands was strange as she was so used to “rolling up my son’s clothes to accommodate his missing hand”.

Deb doesn’t remember ever sitting down with her son and specifically discussing his limb difference with him.  “It just wasn’t a discussion point, and something that we all just accepted as normal,” stated Deb.  So much so, her daughter returned home from secondary school after hearing a presentation from a person who used a wheelchair and her daughter was angry with Deb for “doing her a dis-service by not introducing her to amazing people with disabilities”.  Deb had to remind her that “technically your brother has a disability” to which her daughter said “really, well he doesn’t count then”.

Deb also found that when someone would ask “what happened to your son’s hand” her immediate response was to check as she thought it meant he had just hurt or injured himself.  It often took a moment for Deb to realise they were enquiring as to why he only had one hand.

When asked by adults why her son’s hand was missing, Deb would usually provide an explanation in medical terms as this was a means of expanding knowledge about limb difference in an appropriate manner. Explanations from her son were completely different and generally humorous; ranging from “a crocodile bit it off” to “I lost a sword fight”.  Although he was also well versed in how his hand stopped growing in utero and could reference that where appropriate.

Deb felt that her son was more conscious of his limb difference when he was young, but by the time he was a teenager it was never an issue for him.  Deb recalled only a few occasions where someone made inappropriate comments regarding her son’s limb difference, and generally any enquiries were inquisitive ones.  Deb was keen to build confidence and resilience in her son so she had a policy of giving him three minutes to deal with the issue or respond to the question on his own before she would step in and assist him.  “I very much believe that if parents always jump in and fight their child’s battles or answer on their behalf it can lead to a child feeling that they can’t cope or that their parents don’t have confidence in them,” explained Deb.

Deb’s son was an incredibly active child participating in all manner of activities with his friends and family.  He could swim a lap of the pool by the time he was four and received his scuba diving accreditation by the age of 12.  He also enjoyed BMX riding and tricks, skateboarding, archery and general fun with his friends during his childhood.  However some rules had to be set because her son’s limb could be used as a potentially dangerous asset.

“I had a strict rule that he was not allowed to use his left arm if wrestling with friends or family, as the bony end of his limb could be quite a dangerous weapon and potentially hurt his siblings or friends,” recounted Deb.  In addition, on becoming aware of it, Deb had to put a stop to a prank that her son and his friends used to play on others.  “My son and his friends used to hide in the bushes with a bottle of tomato sauce and wait for someone to walk past, upon which they would jump out of the bushes with sauce dripping over his left arm screaming that he had just had an accident and his hand had been ripped off.  As soon as I realised they were doing that I put a stop to it as I was really worried that they would frighten someone or, even worse, cause a heart attack”, recalled Deb.

Despite the fact that his limb difference posed no challenges, Deb’s son would also try and use it to his advantage, “with a wry smile”, to get out of doing his chores around the house. Sometimes when Deb would ask him to vacuum or clean he would say “but Mum, I can’t possibly do that as I only have one hand”, to which she would laugh and say “nice try, but just get on with it”.

Deb’s son was fitted with a prosthesis, which he called ‘Nippers’, but he only wore it occasionally.  “Nippers generally lived in my son’s toy box and he rarely wore it, finding it more inhibiting than useful, and he has never worn a prosthesis as a grown man,” explained Deb. “To this day it absolutely astounds me that he can fill a hot water bottle using only one hand, without injuring himself or losing a drop,” extolled Deb.

When growing up there was little in the way of occupational therapy offered to Deb’s son.  “In most cases when my son needed to participate in a new task we just supported him to find a way to tackle and accomplish it – he always found a way and it helped him to build resilience and have positive self-esteem,” recalled Deb.

Deb said that there was no need for special help or treatment whilst her son was at school, and he was just treated like any other student with the freedom to learn manual things his own way.  Indeed, the only time Deb had to step in during the school years was when the teacher expected him to learn two-handed typing, something which Deb feels “highlights how much of a non-issue his limb difference was at school, and just the way we wanted it”.

While there was very little support offered to Deb after the birth of her son, she is pleased to see that more services are made available to families of children with limb differences today.  “Limbs 4 Kids resources and the facebook group are a great way for families to connect, access information, and not feel alone,” said Deb.

Deb’s lived experience as the parent of a child with a limb difference, coupled with her psychology training and experiences, have led her to hold a few personal philosophies and beliefs.

Firstly, don’t make a big deal out of a child’s limb difference. In doing so it will then become a big deal and people will see the limb difference before they see the child.

Secondly, don’t consider limb difference to be a tragedy. It’s not one and the joy is in having a beautiful child in your world.

Thirdly, don’t excessively fuss over or provide special privileges.  Doing so will reinforce that the child is different and needs special attention because of it.

Limbs 4 Life is grateful to Deb for sharing her story and hopes that her experiences and thoughts might help other families and children on the limb difference journey.

Aussie Hands

aussie-hands-logoAussie Hands provides support, understanding and encouragement to children and adults with congenital and acquired hand disabilities and their families. Aussie Hands provides opportunities for networking and exchange of information. By providing a supportive network, we aim to ensure that children and adults with hand disabilities don’t feel alone.

Aussie Hands was started by Elizabeth Serpell in 2000 following the birth of her son David with symbrachydactyly. Aussie Hands organises social gatherings in most states of Australia. This enables children with hand differences to meet other and for their parents to share stories, ask questions and support each other.

Aussie Hands facilitates a Facebook Support Group for people to share information, ask questions and reduce the sense of isolation which can often be experienced by families who have a child with a hand difference. The Facebook Group is particularly beneficial for families who live in rural area of Australia and so unable to attend the events.

The team at Aussie Hands can provide guidance and support around difficult issues including decision making around whether to go ahead with surgical procedures. This can include introductions to families who have and haven’t had surgery. Other programs we have held include play therapy for children under the age of 5 years and their parents, and a mentoring program for older children and adults with hand differences.

The Aussie Hands website (www.aussiehands.org) provides a range of information about hand differences, including member’s stories, links to further support services such as counselling and useful gadgets and aids. The website has details on how to become a member (a one-off cost of $30 per individual or family).

Aussie Hands has close association with several key organisations. Aussie Hands is privileged to have a collaborative working relationship Limbs 4 Life. This close connection has allowed us to better support the needs of our members. In conjunction with The Royal Children’s Hospital in Melbourne, Aussie Hands is currently conducting a research project to more accurately map how many people are born with hand differences, with the aim of advocating for collecting data about hand differences at birth.

The importance of inclusive play

olivia1It’s seems an ordinary thing for a kid to play—it’s how we have fun, meet new friends, and start learning what it is to be part of society. So what happens when they can’t?

Our charity Touched by Olivia was established by John and Justine Perkins in 2006, just six weeks after they had lost their baby daughter Olivia. At only eight months old, Olivia Perkins had been tragically taken by a rare disease. In the depth of her sickness, her two parents realised a heart-breaking truth: not all children are lucky enough to be granted a basic human right—the right to play. This realisation led them to found their charity. Despite their circumstances, John and Justine had a new goal. They would create a lasting legacy for their young daughter, and make the world where all children can belong despite difference, where all children can play.

Touched by Olivia has only grown since. Our not-for-profit organisation works mainly to build inclusive play spaces, or Livvi’s Places. In under 10 years, nearly 20 Livvi’s Places have been established across Australia. These aren’t just your ordinary playgrounds: these are places where children can play side-by-side regardless of ability. They revolve around inclusion, encouragement, and belonging.

It seems a simple thing to build a playground accessible to all, but the truth is that many playgrounds around Australia just don’t meet the needs of the community. For Touched by Olivia, it’s more than a matter of installing a liberty swing and a couple of ramps to the slippery slide. Building an inclusive space means designing and creating accessible and integrational play equipment—play equipment that fits the all of the community, and not just one part.

Our team puts a lot of thought into how we build. Whether it be incorporating accessible pathways and accessible parking and bus drop-off zones, or creating and integrating sensory and tactile play and artworks, graduated challenges, points of recognition and visual clues. No detail is left out!

These play spaces are so important. Nearly 1 in 5 Australians are disabled in some way—a staggering statistic. Unexpected too, as so much of our world is tailored to one part of society. This needs to change. Those with different needs to the majority of the population shouldn’t be pushed to the side, especially when this is our children that we’re talking about. All kids need to play, and right now not all can. It’s through the work of charities such as Touched by Olivia that a real difference is being made in our world. We’ve still got a long way to go, but we’re well on our way to fulfilling two inspiring parents’ dream of a happier, healthier world.

“I love inclusive spaces because it gives all kids the opportunity to play equally. Their abilities are catered for and they are able to play freely without barriers. It becomes less about what they may not be able to do in other playspaces and becomes more about just being a kid and enjoying a fundamental aspect of life.” (Leila, Limbs 4 Kids member who is working with Touched by Olivia to create a ‘Livvi’s Place’ in Wagga Wagga)

Limbs 4 Life would like to thank the Touched by Olivia team, and in particular Sarah Coren, for this article.  We would also like to congratulate Touched by Olivia on the incredible work the organisation is doing in increasing the number of inclusive play spaces across Australia so that children of all abilities can play.

For more information about Touched by Olivia visit www.touchedbyolivia.com.au

Maria’s Hope Toys

doll-image-3I’m a stay-at-home Melbourne mum of four young children under 8 and my two youngest boys have Autism.  I am also the creator of Hope Toys.

Early last year, I was inspired by a lady in Tasmania, who recycles, repairs and up-cycles second hand dolls, swapping the glitzy high-maintenance look for a down-to-earth style.

I immediately fell in love with this idea, but instead I wanted to make dolls representing children with disabilities, illnesses, limb differences and any other visible or non-visible conditions, because it’s something I’m very passionate about. I never thought doing something like this would ever be possible, until I discovered this form of up-cycling. I also make wheelchairs, walkers and other medical accessories to go with the dolls.

I LOVE seeing the children’s faces when they receive their dolls for the first time. It’s like I’m watching my own children. Knowing these dolls have made a positive difference in their self-esteem, is priceless. It just keeps me focused and motivated to keep doing what I’m doing.

The biggest challenge is finding the time to make these dolls while balancing family life. I am on the go all the time and usually only find time to work on these dolls in the evening when my kids have gone to bed.  It can often be overwhelming at times but, every now and then, someone tells me how much these dolls have touched their hearts, and that helps keep me going.

Hope Toys makes absolutely no profit on any of the dolls because it’s more of an awareness mission for me rather than a business. I charge less than what they cost to make, because I want them to be as affordable as possible for ALL children. The money goes straight back into materials. Half of the dolls I make are for seriously ill children and I make those for free. The only catch is the long wait time as I am a one woman/mum show.  I don’t know how long I can sustain this, but God willing, I will keep doing it for as long as I can.

Hope Toys is also about using these dolls to help raise awareness of various disabilities, rare illnesses, cancer, limb differences and other conditions, to hopefully help remove the stigma of the many often misunderstood conditions people live with.

Once I finish a doll, I share photos of them on social media and often a photo of the child with their doll and include information in the post about the specific disability or condition. I also often put links to fundraising, awareness, support and charity sites connected to the particular condition. It has been such an eye opening experience for me because I have learnt so much in the past year. As a special needs mum, I know how frustrating it can be when my son’s Autism can often be misunderstood and mistaken for bad behaviour. I think public awareness and understanding is very important.

doll-image-1I also hope these dolls can give toy manufacturers a ‘bit of a nudge’ to shift their thinking and expand on the range of dolls they produce and to see just how important it is for a child to see themselves through dolls and toys.

One mum told me that her daughter (who has Cerebral Palsy) received the doll when she was on her way to the hospital to do a routine medical examination. Her daughter was feeling very anxious about the medical appointment but once she had her doll she was filled with excitement and even pretended to do what the doctors were doing to her on the doll. Her mother was just so relieved and thankful that this doll bought so much joy to her daughter at a time that she otherwise would have dreaded.

This is what I’d love the big manufacturers to see. Even if they think all inclusive dolls like these attract a smaller market, the most important thing to know is that these dolls make a positive difference in children’s lives.

At the moment, I have temporarily put requests on hold until I can complete the backlog of requests, however anyone is free to contact me to put their request on a waiting list.

For more information about Hope Toys visit www.hopetoys.org or email Hopetoys@hotmail.com

Hope Toys can also be found on Facebook www.facebook.com/HopeToysAustralia/ 

Supporting body image and resilience in children with limb differences

This article, prepared by Dr Gemma Tatangelo (Australian Catholic University), discusses children’s body image and ways in which resilience can be built in those who live with limb difference.

What is body image?

Many people assume that body image just refers to the way that a person feels about their appearance. While this is one aspect of body image, another important aspect is how a person feels about the things that they can do with their body. Having a healthy body image means:

  • being comfortable with the way you look (most of the time)
  • being satisfied with what you can do with your body (most of the time)
  • accepting of yourself as you are (most of the time).

It is important to remember that everyone has bad days. Just because you feel frustrated with yourself sometimes, doesn’t mean that you have an unhealthy body image! The same is true for children. Children will have bad days where they feel disappointed or unhappy with themselves and their bodies. Unless this is the case most of the time, they probably do not have poor body image.

How does body image develop among children?

Body image begins to develop in children around the age of three. However, it is not until the ages of about 5 to 8 years old that children being to compare their body to others. Therefore, primary school-aged children become aware of the ways that they are similar and different from others.  Research shows that this is also the age at which body image concerns start to develop. For children with limb difference, body-comparisons may relate to their limb difference or other aspects of their appearance.

What contributes to the development of body image concerns among children?

There is no simple answer to this question. It is a combination of factors including parents, children’s peers and the media.

  • Parents: Parents can be influential in shaping their child’s views about the importance of physical appearance. In addition, research shows that children copy the attitudes that parents have towards their own bodies.
  • Peers: Teasing from peers can also have an impact on children’s feelings towards their body.
  • Media: Children are inevitably exposed to various types of media such as television shows, movies, advertising, online games etc. Unfortunately, the media create an impression that only one kind of body shape is ‘ideal’.

These days, it is impossible to shield children from all of the factors that may have a negative impact on their body image. Media is pervasive and everywhere. It is also difficult to always protect children from the insensitivity of other children. Furthermore, even the most well-meaning parents will occasionally be critical of their body in front of their children (Does my bum look big in this?). Therefore, the best way to protect children from these influences is to build-up their self-esteem, resilience and body image, so that they are not as vulnerable to these pressures. Below are some simple strategies for parents to do this.

Strategy 1: Be open to discussion and reinforce the message that “everybody is different and that is ok”

For parents of children with limb differences, it can be difficult to hear their child talk about the things that they feel they can’t do. Sometimes, the natural reaction is to change the subject or distract the child. However, it can be stressful for the child if their feelings about their differences aren’t validated. So, if your child wants to talk about the ways they are different, use it as an opportunity to discuss the ways that no two bodies are the same and that is okay.

  1. Celebrate diversity with your child by discussing ways that everyone has different characteristics and personal qualities (An activity example: with your child, help them to list all characteristics that they have in common with other family members, and then ways that they are unique from other family members, and finally how other family members are unique from each other).
  2. It is also important to demonstrate to your child that everyone has something special to offer regardless of their size, shape, appearance and abilities.

Strategy 2: Show your child that people are valuable for who they are, not what they look like or what they can do.

Encouraging children to focus on their strengths in areas other than their appearance and physical abilities will ensure their self-esteem is not as vulnerable to appearance-related pressure. There are some simple ways that you can encourage your child to value and accept themselves for who they are:

  1. Remember that you are a role model. Try to speak respectively about your own body and appearance and other people’s appearances. Children copy the attitudes that parents have towards their own bodies. (Also remember that most of us are very self-critical, so don’t worry too much if you slip up now and again!)
  2. Praise their personality traits, behaviours and skill development (for example, in addition to saying things like, “you’re so strong” or “you look pretty”, it is important to also praise their personal qualities, “you are so kind”, “you’re a fantastic reader”).

Strategy 3: Build their self-efficacy

Self-efficacy relates to a person’s belief in their ability to succeed in their activities and goals. A person’s self-efficacy determines how they approach tasks, challenges and goals in their life. It is important to foster children’s confidence in their own abilities, particularly among children with limb difference. There are a few ways that parents can encourage their child’s self-efficacy.

  1. Help you child find the things they are good at. Every child should feel like they are good at something. Allow your child to try different activities (they can be simple things like drawing, painting, singing, story-telling etc.) until they find some things that they enjoy doing and feel that they are good at.
  2. Give them achievable responsibilities. Children need to feel useful and important. You can encourage this by giving them age-appropriate responsibilities (for example, allowing the child to be responsible for collecting the mail or feeding the dog).
  3. Allow the child to make (some) decisions for themselves (where possible). Allowing your child to make some decisions teaches them that their opinion is worthwhile and important, and that they are capable. For very young children, this can be as simple as asking them what they would like to wear or whether they would like apple or orange juice. For older children, this might involve asking them what type of activity they would like to try.

Strategy 4: Prepare your child for their peers

Children are naturally curious and unfortunately they are often very insensitive in the ways they ask each other about their differences. Therefore, it is important to prepare your child for questions about their limb difference. This will enable your child to be able to respond to their peers with confidence and in a way that is comfortable for them.

  1. Help your child to find a way to explain their limb difference that is age-appropriate and comfortable for them.
  2. Practice this with your child so that they know what to say if someone asks. This will give your child the ability and the opportunity to teach others about limb difference and this will be empowering for them. This will also encourage a feeling of openness and acceptance of diversity for your child.
  3. Also try to be mindful that children will listen and take-on-board the ways in which their parents talk about their limb difference.

Strategy 5: Encourage your children to use ‘helpful’ thinking strategies

All children will have days when they feel bad about something that has happened, something that someone has said, or something they feel they can’t do. While this is unavoidable, there is something you can do to make it easier for the child and improve their outlook.  The below technique can help the child to restructure how they think about their strengths and weaknesses. (Note: This activity is suited to children aged 6 and over. It is best to do this activity with your child in advance so that they already know how to use the strategy when a difficult situation arises).

You can use the scenario below with your child as an initial example of the concept. After that, you can think of other hypothetical scenarios as practice. Initially, you will need to help your child through the process, but after practicing a few times with hypothetical scenarios; the child will then be able to apply the concept to their own situations.

Scenario: “Kate feels like she can’t run like the other children in her class”.

Step 1: “What are some unhelpful thoughts that Kate might have?” (Help the child to identify unhelpful thoughts).

Step 2: “How would this make Kate feel?” (Help child to identify negative emotions).

Step 3: “What are some more helpful thoughts that Kate could think” (Help the child to identify helpful thoughts).

Step 4: “How would this make Kate feel?” (Help child to identify positive emotions)”.

Step 5: “Do you see how helpful thoughts can make us feel better?”

gemma-image

Limbs 4 Life would like to thank Dr Tatangelo for sharing her knowledge about children’s body image and strategies for building resilience in children with limb difference.

Limbs 4 Kids: An update on the program evaluation

Dr Narelle Warren, School of Social Sciences, Monash University

Peer support offers well-documented benefits for people living with disability (Dennis, 2003; Arnstein et al., 2002), particularly in terms of improved psychosocial outcomes. Empowerment is a central factor for most involved in the delivery of peer-support (Fawcett et al., 1994), as an increased sense of self-efficacy (belief that you can make things happen if you wish) is often a product of peer-support. Reported benefits range from improved sense of community and belonging, self-confidence, self-esteem, and relationships with others to lowered rates of depression (Schwartz and Sendor, 1999; Stainback et al., 1994). Active engagement in peer-support has a bidirectional effect, offering positive outcomes for both the supporter (the person providing the support) and the supported. In reality, however, most people in a peer-support relationship take both roles, simultaneously giving and receiving some level of support and care.

The mission statement of Limbs 4 Life, and their peer-support programs reflect, this extensive literature. Since 2012, Limbs 4 Life has actively developed targeted programs for identified stakeholder groups. This commenced with the three-year nib Foundation-funded ‘Children, Carers, Youth’ (CCY) Program, a Victorian-focused support intervention aimed at supporting families of children and young people living with limb difference. The findings of this evaluation were then used to support a national roll-out of a program, Limbs 4 Kids.

The Children, Carers, Youth program

The CCY program design drew on Limbs 4 Life’s adult peer-support program, as well as on feedback from Parents/Carers who lacked support following the birth of their child with a limb deficiency indicating that they desired access to facilitated support.  Following consultation with key informants (including parents of children with limb difference), this was refined to respond to the particular needs of parents of children/adolescents with limb difference. The active participation of key stakeholders was central to the CCY program design in developing the key components of the program and in planning the program activities. Evaluations were conducted across three rounds between 2012 and 2014, drawing on online surveys and interviews.

Parent/carers who took part in the CCY evaluation identified the importance of a program such as this to help them attain three-related goals:

  1. Information-seeking about their child’s limb difference, in order to learn of the issues and challenges they could expect to encounter as their child developed. Participants perceived the advice and knowledge from other parent/carers (peer supports), particularly those with older children and who had therefore been through the process of surgery (where relevant) or had experienced increased medicalization, as invaluable for making considered decisions about their child’s care, including around surgery and other interventions.
  2. A desire to meet other families who were in a similar situation. Parent/carers described the importance of the empathy offered in this way, allowing the development of friendships and connections with other families. These connections were perceived as promote a sense of belonging and ‘normality’, and were therefore valued.
  3. Provision of opportunities for their children to meet others with limb difference. This was seen as an essential part of their identity formation and contributed positively to the development of self-esteem. This was perhaps seen by parents as the most important contribution of any program, as it offered psychosocial benefits through reducing body image-related anxiety. Identification and a sense of sameness was a significant part of this, as was feeling part of a broader community. These positive benefits were seen to extend to siblings, many of whom experienced indirect effects of the limb difference (such as disrupted daily schedules in order to attend medical appointments).

Translating CCY into the Limbs 4 Kids program

These findings contributed directly to the design of the Limbs 4 Kids program, which is concerned with a national roll-out of the CCY program. Due to the geographical coverage required in ensuring that people from all parts of Australia could benefit from the program, the Limbs 4 Kids program was translated to be primarily online. The three parent/carer goals identified in the CCY evaluation led to the development of the two main tenets of the Limbs 4 Kids program: information-seeking, which occurs through Thrive magazine, fact sheets and webinars; and social support, through the annual conference, via forums and Facebook, through externally-sponsored mobility clinics, and by connections with inclusive sporting organisations.

Baseline evaluation of Limbs 4 Kids

Limbs 4 Kids was launched in mid-2015, and was preceded by the collection of baseline evaluation data from 42 parents involved in some capacity with Limbs 4 Life.

The parent/carer participants anticipated several roles for Limbs 4 Kids; as with those who took part in the CCY, most wanted to be sufficiently informed to feel capable of making the best decisions for their child’s care. This was especially significant for those who had not received information on supporting their child on limb-difference-related issues from their formal health services. Limbs 4 Kids was therefore seen as directly presenting opportunities for parents/carers to advocate around their care-related activities: psychosocial support, prosthetic technologies, funding, community resources, and so forth. Given participants’ interest in actively supporting – and seeking ways to enhance – their child’s wellbeing, it was unsurprising that they reported high levels of general self-efficacy, suggesting that they felt as though they were in control or able to effect change in situations in their life.

Parents/carers also felt it was important to share advice and knowledge with other parents/carers, particularly in terms of role modelling. Reciprocity was significant in these exchanges, and most participants wanted to provide support as much as they desired receiving support. The idea of a mutually supportive community permeated all participants’ accounts.

Connecting with like others was perceived as having multiple benefits, not only in terms of helping parents to cope through instilling in them a sense of shared experiences (and so they were not alone in their journey), but as simultaneously offering them new strategies for understanding their child’s experience.

During the baseline evaluation, parents/carers felt that engagement in the program would potentially offer them, their child, and any siblings, new ways of engaging with others, particularly around ideas of difference. Engaging with other families of children or young people with limb difference was therefore, as with the CCY, seen as an essential component of the program – both in terms of identity formation and for self-esteem. As one person stated, they engaged in the program “to demonstrate life is good living with limb difference.” Through such networks, the Limbs 4 Kids program is seen to offer important long-term benefits to the child, in terms of supporting their resilience-building and enhancing their wellbeing. Parents anticipated that this would have long-term psychosocial benefits.

Next steps

Between August and October 2016, the end-term evaluation will be conducted. Those who took part in the baseline evaluation will again be contacted to invite their participation. If you were not involved in the initial evaluation but are interested in taking part in the evaluation, please contact Narelle (Narelle.Warren@monash.edu). The overall evaluation findings are expected in October 2016, at which point concrete recommendations regarding the Limbs 4 Kids program, including insights on the long-term program sustainability, will be made. All evaluation reports are also available upon request.

References

Arnstein, P., Vidal, M., Wells-Federman, C., Morgan, B. & Caudill, M. (2002) From chronic pain to peer: Benefits and risks of volunteering. Pain Management Nursing, 3(3): 94-103.

Dennis, C.L. (2003) Peer support within a health care context: A concept analysis. International Journal of Nursing Studies, 40(3): 321-332.

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Limbs 4 Kids Golf Clinic (Adelaide)

Golf Clinic 1On the 5th of June 2016 Limbs 4 Life collaborated with the charity Kidney Kids SA to offer a golf clinic in Adelaide for children and young people living with limb difference or chronic kidney disease.

Despite it being a cold and wet morning, 30 children and family members braved the weather to gain an introduction to golf and have a fun day out.  Golf is an activity that benefits people of all ages and is a sport that promotes balance, physical wellbeing and provides friendship opportunities.  This was particularly true for the children and young people who took part in the Clinic.

Under the guidance of golf professional Anne-Marie Knight from Adelaide Shores Golf Park, the children were given an opportunity to ‘try golf’ and learn some new skills.  Using specialised golf clubs and putting kits the children had a chance to practice target ball hitting among other tailor-made activities.

The Clinic saw children and their siblings take part and it was great to see everyone have fun, learn skills and build new friendships during the activity.

Collaborating with Kidney Kids SA allowed for a terrific partnership opportunity, bringing together two cohorts of

children who live with physical differences.  Whilst the first collaborative event, it is likely that regular golf clinics at Adelaide Shores Golf Park will be made available to even more children and young people in the future.

As Sally, one of the mothers who attended the event, said “Thanks to all at Limbs 4 Kids who organised theGolf Clinic 3
Golf Clinic … I’m sure some budding talent has emerged and there were gorgeous kids all round”.

If your child is interested in exploring golf please get in touch with Limbs 4 Life at 1300 782 231 and we can put you in touch with a golf professional and golf club in your community.  You can also learn more about junior golfing and My Golf, the national junior golf introductory program, at www.mygolf.org.au

If you would like more information about Kidney Kids SA visit www.kidneykids.com.au

Össur Mobility Clinic

Össur presents a 2-day Mobility Clinic which is designed for amputees of all ages and activity levels for a truly unique experience where they improve their overall mobility while connecting with other amputees.  The Clinic is being held in Sydney on the 21st and 22nd of April at Newington College (Stanmore).  This is the second year of the Mobility Clinic and Limbs 4 Life is a proud partner of this event.

Join Össur and learn:

  • Techniques to maximise prosthetic capabilities
  • Leg-over-leg running mechanics
  • Proper methods for improving speed and balance
  • How to move in multiple directions for a variety of recreational activities
  • Training routines and sport-specific exercises

For more information, read about the previous Össur Mobility Clinic and to register visit – www.ossur.com.au/ossur-mobility-clinic

Ossur Mobility Clinic Flyer                Ossur Mobility Clinic Flyer 2

A Score! for active kids

ScoreChildren don’t come with a training manual; parents are expected to figure things out as they go along, and with a world of information at your fingertips, “Google it” has become the catch-cry for many.

But finding the right information it isn’t as straightforward as it seems. For parents whose child has disability, the challenge is even greater and Google doesn’t always solve the problem.

That’s where Score! comes in. Developed by Victorian peak body Disability Sport & Recreation, in partnership with the nib foundation, this free, interactive online directory helps parents find sports and activities that meet their child’s interests and abilities.

Manager Community and Member Services, Tim Nield, said the organisation’s goal was to help as many people with disability find a sport or recreational activity they could play for life.

“We know it’s absolutely vital that people with disability do some form of physical activity. There are mountains of research showing that exercise improves your health, reduces the long-term risk of chronic illness like diabetes and cardiac disease, and has a positive effect on a person’s mental health as well.

“We want to help people develop the habit of exercise from a young age, so that every Victorian can enjoy the health benefits being active brings.

“Score! is just one tool we have developed so parents have the knowledge they need to give their child those opportunities,” Tim said.

How does Score! work?

Anyone wanting to use Score! needs to register; the information you provide allows you to filter your search.

Once you are registered and have logged in, you can look for events in your local area, venues that are accessible, or programs that suit your abilities.

Everything on Score! can be rated, so once you have found an activity you would like to try, you can read what others have said about it. Score! is a fully moderated site, so it is a bully-free zone; insults, epithets and derogatory language are not allowed.

Each activity, venue or event listing has contact details or websites listed so you can find out more information before you head off, and the map function can help you visualise where everything is in relation to your home.

Importantly, Score! is completely free, and if you can’t find something your child wants to do on Score!, the team at Disability Sport & Recreation are more than happy to research opportunities for you. Call them on 1800 23 46 48 or visit www.dsr.org.au

Christmas Parties for Special Children

Christmas PartyDuring November and December last year, 143 Limbs 4 Kids children, siblings and families attended ‘Christmas Parties for Special Children’ in Brisbane, Canberra, Melbourne, Perth and Sydney. This was the first year of Limbs 4 Life being invited to take part and was a wonderful chance for families to enjoy a fun day out.

Paul Munro, the Brisbane General Manager, outlined that the parties have a lengthy history with clear objectives. “The Parties were born out of a request from The United Nations, in 1979, to help celebrate the International Year of the Child.  Since that time they have given children, who may otherwise have missed out on the round of Christmas activities, the chance to gather and share the magic of the Festive Season with a group larger than their immediate circle of family and carers,” Paul explained.  “Our goal is gather children who are sick, seriously ill, physically or intellectually challenged, or disadvantaged through circumstance and help them forget their troubles for a few hours. We want to help children to see that they are not alone and help them to just be children at an exceptional time of the year,” Paul enthused.

The ‘party’ went into a hiatus for a few years and was then slowly established around Australia in capital cities, regional centres and across New Zealand; with both Brisbane and Melbourne established in 1995.

Lynne Cavanagh, the Melbourne Party Manager, said that jJust about everyone has a soft spot for kids, but when a child has specific needs, struggles on a daily basis and faces those challenges with such bravery your heart melts even more. Our events are not only for those children but it is for their important siblings. Similarly, it also for parents to spend a great day with their children and meet other families who might share similar issues”.

Through the generosity of sponsors, children were afforded the opportunity to play on a range of rides, meet superheroes travelling around the grounds, dance to DJs, meet an array of animals in the petting farm, have faces painted and, of course, meet Santa who came laden with gifts!

One parent who attended the Melbourne Party enthused that “it was a fabulous day for our son. He kept saying it was the best party ever. He did so many different things and he just loved his present and the soft toy! He said he is a very lucky boy”.

Another parent who attended the Melbourne Party shared that “it was a great function and we feel very lucky for the kids to be invited to this event!!” while another said that “we couldn’t get the kids off the rides, it was a fantastic day”.

The organisation was pleased to have members of the Limbs 4 Kids family take part in 2015.  “As we find out about groups, organisations and individuals who would benefit from attending the event we gladly extend an invitation for them to participate. We became aware of Limbs 4 Kids through Zaharoula Harris, who also volunteered her time photographing the Melbourne event,” Lynne explained.

The parties are funded through significant contributions from corporate sponsors and volunteers who believe in the value of accessible parties for children.

Of the Canberra Christmas Party, one Limbs 4 Kids parent who attended said that “it was an amazing event and so well organised, the generosity of the sponsors and everyone who gave up their time to be there was incredible … It was lovely that both boys could attend and a welcome break from the intensity of hospital visits etc”.

Limbs 4 Life are extremely grateful to the organisers, their sponsors and all the volunteers who made the parties so special, and we look forward to offering the chance to take part again in 2016.

For more information about the Christmas Parties for Special Children visit www.christmasparty.com.au and www.sccpau.com.au