ISSUE 17 | SPRING 2018
MEET OUR MINDFUL MAMAS MINDFULNESS
apps you need
warning signs you’re not coping and where to go for help
+ the link between
nutrition & wellness
care Self-wellbeing &
DEALING WITH MELTDOWNS – SWINGS & ROUNDABOUTS PLAY FEATURE – WALKERS REVIEWED – RAHMAN SYNDROME
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FEATURES AND ARTICLES 12 SELF-CARE AND WELLBEING: Meet our mindful mamas, caregiving, self-care and nutrition, warning signs you’re not coping, where to go for help + apps to manage your mental health 25
Practical ways to help a special needs parent
Walkers product review
42 Swings and roundabouts – outdoor play 49
Accessible family fun
50 Meltdowns – strategies for parents 52
REGULARS 5 6 23 26 29 47 55
LEAP IN! APP Leap in! is a registered charity and a NDIS-registered plan manager. Working on a vision to bring the National Disability Strategy to life by making it easy to navigate the NDIS and implement personal goals and plans, leap in! offers a unique, digital-based platform that connects Australians with disabilities, providers and the community groups who support them, all in one simple place. www.leapin.com.au
We Love Welcome Did you know… Family profile What’s on calendar Cooper’s travels Competition corner
SPECIALCISE An exercise program with a difference. Specialcise offer tailored programs to increase fitness, strength and build muscle and confidence for children with developmental disabilities. They are striving to send a clear message; our kids need to be fit and active just like their typically developing peers. Currently offered in Brisbane, QLD. www.specialcise.com
WE LOVE INTERACTIVE COMPANION PETS
Mighty Able is a brand dedicated to celebrating all abilities. Mighty clothes for the mightiest of people. Sized from babies to adults and in a range of colours and messages. Mighty Able is spreading the message of inclusion one tee at a time – here here!
Companion Pets look, feel and sound like real cats and dogs, but they are so much more! They have built-in sensor technology, and will respond to petting and motion much like the pets you know and love. This twoway interaction helps create a personally rich experience that can bring fun, joy and friendship to its owner (ages 5+).
360 TRAINING SPOON BY BEABA
THE THING BY RACHEL JACKSON The boy was just a boy… but he had a Thing. This short story brings to life the experience of high functioning autism through the eyes of a child diagnosed with it. It is not a guide or a ‘how to’ but a story to be shared between parent and child, or within the classroom.
A self-leveling spoon designed for children learning to self-feed. The innovative 360 degree-rotating handle prevents spills by ensuring the spoon always remains horizontal. It is dishwasher safe and BPA free. www.beaba.com.au
SMARTSEAT PRO BY PME GROUP SmartSeat Pro™ is the ultimate in specialist seating for circumstances where postural alignment, control and pressure management is needed in an ‘easy chair’ format. The SmartSeat Pro is highly adaptable with features that include three upper back-rest components which are adjustable in height, depth, angle, offset and rotation. Each of these elements include built-in adjustable ‘wings’ that can be individually positioned to contour the seat. www.pmegroup.com.au www.sourcekids.com.au
TO SOURCE KIDS
There has been so much media coverage in recent times about the need for parents to take care of themselves in the face of all the challenges in raising a family – self-care, self-love, mindfulness and wellbeing are all terms that get bandied around quite a lot.
Send all letters and submissions to: email@example.com
WRITERS AND CONTRIBUTORS Nicole Davis, Rachel Williams, Emma Price, Naomi Sirianni, Natalie Roberts-Mazzeo, Darrielle Maree, Tanya Savva, Sarah de Visser, Dr Kelly Bowers, Heather Cox, Laura Lewis, Melinda Hildebrandt, Marga Grey, Julie Jones, Cooper Smith.
Add to this the challenge of receiving a diagnosis that your child has a disability, managing the grief, shock and sadness that comes with this, the mountain of expectations that are suddenly placed on your shoulders (I can vouch that this is ten times greater than any parent of ‘typical’ children feels), the endless appointments and paperwork, and of course you probably have a job to hold down, perhaps other children and for many a loving relationship that also needs to be nurtured.
A STAGGERING 25 PER CENT OF SPECIAL NEEDS PARENTS MEET THE CRITERIA FOR DEPRESSION – THAT IS ONE IN EVERY FOUR SPECIAL NEEDS PARENTS. READING THIS STATISTIC REALLY BROUGHT IT HOME TO ME. There is no doubting that special needs parents do it tough, and as much as our friends, family, colleagues and those around us try to or think they understand, until you’ve faced the reality of parenting a child with a disability and lived this experience, I’m sorry but they just don’t get it. As a team, we wanted to tackle the issue of self-care and wellbeing head on – as Australia’s leading magazine and resource for parents and carers raising a child with a disability – we believe we can do what so many others are not doing for special needs parents and provide the information, resources and guidance to build a connected community across the country and help parents and carers on the marathon journey that having a child with a disability creates. So in our first self-care and wellbeing issue we talk to three mindful mamas (all on the special needs parenting journey with us), we look at the role nutrition plays in your wellbeing and some practical ways you can improve this, what to do if you’re not coping and some everyday tips for self-care, where to go to for help and yes, some mindfulness apps you need on your phone! This won’t be the last you hear from us about self-care and wellbeing, I strongly believe that creating community and connectedness helps parents to not feel alone and less isolated in the face of what is a challenging journey; that together we can support one another and have each others backs as we talk, cry, laugh and celebrate. I hope you love this issue, be gentle on yourself and take the time to do something nice for yourself – today! If you feel like you are not coping or need to speak to someone, please see our list of resources on page 19 on where to go for help.
PO Box 690, Noosaville QLD 4566 ABN: 36 614 552 171 www.sourcekids.com.au
And for good reason, because let’s face it, the minute any new parent welcomes their first child into the world, they instantly come second, or even third behind their child and then their partner in the pecking order.
SOURCE KIDS LIMITED
COVER Cover photography by Amber Joy Photography www.amberjoyphotography.com.au
ADVERTISING BUSINESS DEVELOPMENT MANAGER Naomi Sirianni – 0447 755 043 firstname.lastname@example.org ADVERTISING ACCOUNT MANAGERS Kelly Wilton – 0499 017 354 email@example.com Carmen Smith - 0438 847 696 firstname.lastname@example.org
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PUBLISHER / CEO Emma Price Editorial and advertising in Source Kids is based on material, written and verbal, provided by contributors and advertisers. No responsibility is taken for errors or omissions, and opinions expressed do not necessarily reflect those of the publisher. All material in Source Kids is subject to copyright provisions. No part of this publication may be reproduced without written permission by the publisher.
DISTRIBUTION Source Kids is distributed through therapy centres, hospitals, paediatricians, special needs schools and early intervention centres. For distribution enquires, contact firstname.lastname@example.org
WE LOVE INCHARGE BOX A lockable, stylish tech storage unit! Ahhhhhâ€Ś Manage clutter and the time spent on technology with this inventive unit. If you find yourself hiding iPads, smart phones and TV remotes due to constant screen time, this is the solution, and why not charge devices during the digital detox! www.inchargebox.com.au
DEALING WITH AUTISM BY RANDA HABELRIH One Australian familyâ€™s journey and what they learnt through trial and error that author Randa Habelrih thought may benefit others too. Her goal is to empower you in navigating the world of autism and see the success that can come from changing perspective a little. new.dealingwithautism.com.au
STRIDER BALANCE BIKES Check out this new 14inch bike with attachable Easy-Ride Pedal kit! Break down the overwhelming task of learning how to ride a bike into a safe and natural progression with a balance bike, and then convert it to a pedal bike with this cool new kit! Suitable from 18 months all the way up to adults, in a range of colours, we know there will be one perfect for your child! www.stridersports.com.au
MOOD TOOLBOX APP Does your child need help with regulating their emotions? Mood Toolbox provides games and tips for emotional intelligence. Learn about strategies for mood management, track moods, social stories and achievements. It is a free app to download and can be used at home, in the classroom or within therapy. Available from the iTunes store.
TYREX PERSONAL PORTABLE RAMP An industry first! A lightweight, portable ramp made from recycled tyre rubber. A solution to everyday outings without having to rely on bulky access ramps around town, take the ramp with you! Available in three sizes, the ramps are connected with a strap and also come in a handy carry case. Such a simple yet effective way to be on the move and into places otherwise inaccessible. www.tyrex.com.au
Bringing fun, practical and unique products to children with special needs in Australia.
Australiaâ€™s newest online disability store has just launched with a great range of products including EazyHold straps, EZPZ mats, Reflo cups and Snug cups. The range is growing daily so make sure you subscribe to receive all the latest product releases.
EXP OW RA PU P
BRISBANE 2018 In July, we hosted our first-ever Source Kids Disability Expo in Brisbane! The two-day event showcased over 135 disability providers and their products and services, along with 16 guest speakers plus try and test, activity, sensory and recharge zones. Almost 3000 people came along to see what was available and take part in the activities on offer. Here’s a snapshot of the expo…
Just released… 2019 expo dates
AUSTRALIA’S MUST-ATTEND DISABILITY EXPOS
During the expo we asked you to share your pics on social media with the hashtag #skexpo and we were overwhelmed by the amazing pics posted, here is the winning entry!
Melbourne Convention & Exhibition Centre
Brisbane Convention & Exhibition Centre
29-30 MARCH, 2019
5-6 JULY, 2019
More info and register for updates at www.sourcekids.com.au/expo
Freedom is choosing where you want to explore.
Wizzybug! Exciting and fun powered mobility option for young children
Wizzybug is a powered vehicle for young children to experience early years in an adapted mobility device. It has a range of controls and seating adjustments and can be used with close adult supervision indoors and outdoors in accessible areas such as level gardens, playgrounds and parks enabling children to have a fun experience with their first wheels. Independent mobility has been proven to assist and encourage important developmental skills, along with giving your child the freedom to safely explore their environment.
- Suitable for children aged between 2-5 years (maximum weight 20kg) - A range of control options including joy stick, specialist switches and remote operation - Easily transportable â€“ dismantles quickly - Has a standby charge of 2 weeks and will usually run for a few days based on moderate use - 8km range on full charge - Maximum speed of 2.9km/hr (speed can be limited)
Wizzybugs can be hired or purchased from CP Tech.
Call us on 1300 106 106 to find out more.
Create fun and active learning to help develop: motor skills coordination strength play balance
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View our entire Active Play range online
MFB0150 Sourcekids Jenx Standz 210x148 FA.indd 1
17/04/18 4:09 PM
& wellbeing IN THE WORLD OF SPECIAL NEEDS PARENTING, SELFCARE AND OUR OWN HEALTH AND WELLBEING ARE ALMOST ALWAYS PUSHED TO THE BOTTOM OF THE NEVERENDING TO DO LIST. But the old adage that you can’t pour from an empty cup is never truer than when your child needs you, often 24-7. Here at Source Kids HQ we’re as guilty as anyone of putting ourselves last, so it’s time to take some action.
OVER THE NEXT FEW PAGES YOU’LL FIND SOME PRACTICAL TIPS AS WELL AS SOURCES OF INSPIRATION TO HELP YOU PRIORITISE YOUR OWN NEEDS AND WELL-BEING. It’s also important to acknowledge that sometimes one of the greatest acts of self-care you can do is to ask for help, so we’ve provided a list of resources for you if you need to reach out.
THREE MINDFUL MAMAS TALK SELF-CARE
What can you do to prioritise ‘you’ to ensure you’r e the best versio n of yourself not just for yo ur child and th e rest of the fam ily but for your own peace of mind and happiness ? We talk to thre e mums who are working ha rd on themselv es and helping ot hers in similar situations in th e process.
MEET OUR MINDFUL MAMAS... TANYA SAVVA Tanya is solo mama to Mackenzie who lives with blindness, autism, developmental delay and panhypopituatarism. Tanya is passionate about empowering mothers to reconnect with the essence of their true Self through her coaching services, wellness workshops and retreats for special-needs mamas.
DID YOU HAVE AN AHA MOMENT THAT MADE YOU START WORKING ON YOURSELF OR HAVE YOU ALWAYS BEEN FOCUSSED ON YOUR MENTAL HEALTH AND WELLBEING? T. In 2016 after seven years of solo parenting I found myself in a constant state of exhaustion and suffered from severe gut inflammation due to stress. I was sick of waking up feeling like crap and I struggled watching Mackenzie’s suffering. The things that used to make me feel good like nutritious foods and yoga didn’t help anymore. I knew I wasn’t giving her what she needed and I was sick of feeling so unwell. I’ve spent the past two years working on me and it’s been amazing. N.
I’ve always been curious about the mind and body connection ever since I can remember! When I was working for a global corporate company, I started to attend yoga classes to help balance out my fast-paced work lifestyle. Yoga became a huge part of my life, so much so, that I became a yoga teacher. Then naturally after my motherhood journey changed after my daughter’s diagnosis, I understood that the value of honouring my self-care was also a direct portal to honouring hers.
D. After spending five very long years living in sadness, I hit an absolute breaking point. I wanted so dearly to feel better for myself but also for my family. So, I woke up one day and said to myself, ‘what right do I have to feel sad when Bella smiles all day?’. And so she was my motivation to send myself on a quest to create a happier life and then go on to become a Holistic Counsellor to support other mothers in the world. WHAT HAS BEEN THE MOST CHALLENGING PART OF YOUR PARENTING JOURNEY? D.
By far watching my daughter experience seizures and feeling completely helpless as a mother. Thankfully these have now stopped thanks to trusting my intuition and finding the right holistic healing mix for her.
T. Being a single parent, especially due to Mackenzie’s medical needs. There are only a couple of people that
Natalie is mum to Chiara and Grace and an international speaker, writer, coach and advocate on a mission to create conscious change for women, their families and the world. Natalie has created a reignite program that has impacted the lives of many mothers raising little warriors with a disability or diagnosis.
Darrielle is mum to two angels including her daughter Bella who has Rett syndrome. She is a holistic counsellor and an empowerment coach working to support women who are seeking change in their stressful lives.
Natalie and Darrielle will be running a free event later this year to support mums. For details, keep an eye out over the coming weeks on their social media pages.
know how to manage her symptoms and I always felt guilty asking for help. I’ve had to let go of the ‘martyr’ mentality because the reality is, I can’t do it all by myself. I burnt out trying until I didn’t have a choice but to accept support.
Watching my child suffer has been the most challenging part. With over 300 hospital appointments, a few intense ambulance trips and some wild sleepless nights, the load on my mind, heart and body has been huge. Grief has been a tough one to manage also, it can hit you like a ton of bricks when you least expect it.
WHAT’S THE SINGLE MOST EFFECTIVE CHANGE YOU’VE MADE TO YOUR LIFESTYLE OR ROUTINE IN TERMS OF YOUR MENTAL HEALTH? N.
I learnt the value of staying aligned to my values and creating boundaries. To make choices that feel right and honour the way I want to feel and show up in the world. There’s no guilt when I say ‘I’m not going’ or ‘I have to cancel’. I’m very clear with my boundaries, so I have more time and energy for the things and people that I love.
Giving myself permission to ask for and set up regular support so that I can create space for me. I used to feel guilty about having ‘self-care time’, however now I see the impact my renewed energy has on my children when I am back in their presence and the guilt immediately falls away.
I introduced a gratitude journal that helped me focus on the good when things were tough, and accept the things I couldn’t change. Daily meditation gave me time to reconnect with the essence of who I am and reminded me I could choose to be happy despite our challenges. I stopped doing things that didn’t bring me joy and followed my passions so I could feel a deep sense of fulfilment.
what I need in terms of supports around these high-stress moments, so reaching out for help is a must. We weren’t supposed to do this alone.
WHAT’S YOUR WORK IN PROGRESS? IS THERE ANYTHING YOU NEED TO STOP DOING, OR DO BETTER? T. I’m trying to reduce time on my phone! No phone for the first hour upon waking and before bed and I use flight mode when Mackenzie comes home from school. I make sure I use the night-mode after dark to avoid the blue light that triggers a state of alertness and I read and meditate instead. It’s a work in progress and at the very least, I’m aware of when I’m failing in my commitment. N.
My work in progress is learning to be present in the moment. I’m very driven by nature, so my mind is often in ‘doing’ mode or ‘creating’ mode. I feel I need to learn to just stop and be present to the moment.
My life is always a work in progress! I think many of us aim for that pot of gold at the end of the rainbow (constant happiness), however the truth is, life will always be about continual learning experiences. For me it’s about how can I setup tools to support myself through this journey so that I view the challenges as gifts.
STRESS IN SPECIAL NEEDS PARENTING CAN’T BE AVOIDED, WHAT’S YOUR GO TO WAY OF DEALING WITH HIGH STRESS MOMENTS. D.
I try to stay in the present moment, rather than worrying about what ‘might happen’ next. The other thing I do is try not to replay the story over and over again afterwards, either in my head or to others verbally. Instead focussing on what is happening now because the more we go back over high stress moments, the longer we stay in that state.
Self-compassion is number one, because there are going to be times where I may not deal with high-stress moments very well and that’s okay. We have to be kind to ourselves and understand that our motherhood journey comes with a lot of challenges, so we need to afford that loving care that we give to our partner and children, also to ourselves. I am also very clear on
T. Yoga taught me that everything’s temporary and the hard times pass. I close my eyes, breathe and wait for the storm to settle. Nine years into my journey, I know that challenges facilitate growth, so while it doesn’t feel great at the time, I know we’ll find our way out of the dark when the time’s right. But my biggest secret is great nutrition. I use a nutrition program with lots of adaptogens that help fight the effects of stress. I double dose on my morning Ionix when I’m exhausted or stressed – It’s been my saving grace! DO YOU EXERCISE? WHAT ACTIVITIES HELP YOU MENTALLY? N.
I attend weekly yoga classes, which I love. I also ride my bike everywhere I can. I love music to get me moving, when I need to shift some energy I’ll listen to my favourite dance tracks and dance around the house. Getting my body moving, getting fresh air and un-plugging is a huge priority for me.
T. Yoga keeps me feeling strong and healthy and the mindfulness helps me tune in to myself and listen to what’s happening inside. I love walking, swimming at the beach and HIIT training and value time alone making my body feel good. Mackenzie and I love the trampoline, riding our bike and swimming in the ocean together. D.
I walk our dog 4-5 times a week and that is enough to move my body. I have a morning ritual, where I get up 45 mins before the kids every weekday to setup my day and my mindset. I meditate, dance, journal, light a candle, I mix it up to whatever feels good in the moment. For me this is the difference between a great day and a stressful day!
WHAT’S THE ONE THING YOU DO WHEN YOU NEED AN ENERGY BOOST? T. Handstands and headstands! It’s so playful and the rush of energy to my head wakes me up instantly. Or I dance like crazy to a fun song. I nutritionally cleanse every week using Isagenix for a whole body and mind reset. My energy levels and state of wellbeing are more stable in my late 30s as a single special-needs mama then ever before thanks to this amazing program. D.
I have a long list I tap into, here are just a few: - Have one of my wholefoods shakes, - Listen to something uplifting on YouTube, - Play an uplifting song and dance around the lounge-room (the kids always end up joining in and having a laugh too!), - Break the energy and go for a walk in nature with the kids!
Get out into nature! It’s the simple things!
I TRY TO STAY IN THE PRESENT MOMENT, RATHER THAN WORRYING ABOUT WHAT ‘MIGHT HAPPEN’ NEXT 14
MAKE A CUPPA, SIT DOWN, BE SILENT, CLOSE YOUR EYES AND NOTICE YOUR BREATH
IF A MAMA ONLY HAS 10 MINUTES IN THE DAY FOR HERSELF, WHAT CAN SHE DO? N.
Listen to your intuition and what you need on that day and in that moment. Let’s face it, our motherhood journey changes a lot. So my biggest tip here is to lean into what your mind and body is telling you. How do want to feel? You may want to spend time in nature to feel grounded, or listen to your favourite dance track loud! Or lie down in bed and just focus on your breath and re-energise, or take a long hot soak in the bath. However, with that said, you may need to just zone out and watch Netflix, eat some fries or chocolate. Only you know the answer to what you truly need in your sacred 10 minutes of time, make sure you enjoy it and guilt free too!
T. Make a cuppa, sit down, be silent, close your eyes and notice your breath. Give yourself permission to stop so you can check in and ask ‘what do I need in this moment to get through my day’. You could set an intention for your day and ask for the strength and tools you need to get through it. A little shout of gratitude also goes a really long way. D.
mama can fit a lot into 10 mins! Here A are a few of my favourites: - Light a candle with the intention this is ‘just for me’, - Make a cup of tea in your favourite cup, - Sit in the sunshine and soak up all of its healing light, - Read a few pages of an uplifting book, - Listen to a few songs that makes you smile (make up a special playlist).
DO YOU HAVE ANY BEDTIME RITUALS TO HELP YOU SLEEP? D.
Simply listening to my own breath can be powerful. It takes my mind off everything else and allows me to instantly relax. I also find simple prayer (not the religious type) helps me to release and surrender a lot of worry and stress.
T. I don’t touch my phone for an hour before bed so my brain isn’t tricked into thinking it’s daytime and I don’t own a TV. I shower right before I go to bed and if I still feel a little wired, I read or meditate. I also say a little mantra “I trust the sleep I get tonight will be all I need to allow me to wake tomorrow feeling rested and energised” … It doesn’t matter if I have 3 hours or 8 hours sleep, my mantra works! N.
I love to read, there is always a heap of books by my bed. I also practice Yoga Nidra, it’s my go-to when my mind can’t switch off. There’s always essential oils simmering through the house to help us all chill after a busy day. My daughters and I spend time visualising and manifesting, yep it may sound a little ‘out there’, but we co-create a magical life for our family and night time seems to the time where we can all dream big.
IS THERE A BOOK OR MOVIE OR SOMETHING SIMILAR THAT INFLUENCED YOUR VIEW OF SELFNOURISHMENT AND SELF-CARE? T. ‘The Art of Happiness’ by the Dalai Lama/Howard Cutler was the catalyst for me choosing happiness. It was a shift in mindset that helped me see a different way of living. Then I used ‘My Miracle Morning’ by Hal Elrod to cultivate more time for myself. D.
The book that changed my perspective on life and started me on my own transformative path is called: ‘Freedom to love’ by Hong Curley. Hong shares through her real clients’ stories how they turn what seems like the toughest of situations, into the biggest gifts in their lives. I even personally wrote to her after reading it and she wrote back encouraging me to start to change my perspective in my own life!
My daughter Chiara has had the greatest influence on how I view my self-nourishment. Everything I do to take care of myself, is directly linked to the care I need to provide for her.
ONE LAST THING YOU’D LIKE TO SAY ABOUT BALANCE, WELLNESS AND SPECIAL NEEDS PARENTING T. It’s imperative that we invest time and energy into fulfilling our own needs so we can help our children thrive. You are worthy of the time you need to feel good. As hard as it is, being a little selfish is necessary. Trust that your body knows what it needs to feel great – it doesn’t have to be complicated. Wholesome nutrition, supplements, movement, rest, and time doing things that bring you joy is all it takes. You need to put on your own mask before you can put on someone else’s. D.
I believe that we are the lucky ones who have the opportunity to firstly transform ourselves, and then to create real change in our world. Our children selflessly chose to come here to shine their lights on many of us. My motivation is to support my daughter in her mission to soften and heal our world. She teaches me the deepest of wisdom and for that I hold so much gratitude in my heart. Together we can make change thanks to our angels. As we heal, they heal.
No one on this planet will help you more than yourself. Stop giving away your power to other people. You have an incredible reservoir of resources within you. Do what you need to honour your time, energy and space. When you flourish, so too will your family.
To contact Natalie, Darrielle or Tanya to see how they can help you: www.tanyasavva.com $ @tanya.savva Email: email@example.com
$ @natalierobertsmazzeo ! @natalierobertsmazzeo
www.darrielle-maree.com $ @darriellemarree Email: firstname.lastname@example.org
BY SARAH DE VISSER, CLINICAL NUTRITIONIST AND MASSAGE THERAPIST
CAREGIVING, SELF-CARE & NUTRITION Raising a child with special needs is an incredibly rewarding and enriching journey that gives personal insight and fulfilment quite like no other. Drawing upon incredible strength, determination, resilience, compassion and love, parents and care-givers work hard towards a quality of life for their child that is filled with opportunity, equality and inclusion. However, there are also many unique challenges and demands that arise from supporting a child who is highly dependent, and these often take their toll physically and emotionally leading to chronic distress and burnout.
THE VALUE OF SELF-CARE The effects of chronic stress can affect the body in many ways, including: • Weakened immunity and vulnerability to autoimmunity. • Metabolic disorders contributing towards weight gain, cardiovascular disease and insulin resistance. • Sleep difficulties affecting sleep onset and duration.
• Poor digestion and digestive problems (e.g. IBS like symptoms such as diarrhoea and/ or constipation, wind and pain). • Irregular thyroid function. • The development of chronic anxiety and/or depression. • Irritability and/or loss of the ability to enjoy the here and now. A child’s disability is not going to magically go away, so if parents can’t significantly change their circumstances, it’s vital to find ways to manage levels of stress, build internal resources and thrive while remaining in the caring role. The truth is that there is no single strategy that can effectively manage and cultivate a sense of wellbeing, as wellbeing in itself is made up of different elements. Taking a holistic approach utilising a blend of strategies is key. Some ideas include: • Prioritising and taking at least one hour of time to yourself a week. • Incorporating a short practice of mindfulness into your daily routine. • Mapping out your network of support in order to visualise who you can call upon when you’re in need of some assistance. • Engaging in an evening (or even weekly) practice of self-reflective journaling to observe how your mind is speaking to you. Nutrition is also a vital component of selfcare and plays a huge role in creating the physical foundations of wellbeing while also feeding a healthier state of mind. So many people that I speak with struggle with sugar cravings and emotional eating patterns – how does stress and biochemistry exacerbate these habits? As I have previously mentioned, being a full-time caregiver can be physically and emotionally draining and as such, influenced biologically by the stress hormone cortisol, it’s very common to regularly crave stimulants (caffeine included) and binge on carbohydrate rich, sweet foods to provide a tired body and mind with a quick source of energy. A depletion of the chemical serotonin inside the brain, essential for mood regulation and healthy sleep initiation (through its conversion into melatonin inside) and often the target chemical of antidepressant medication, can also play a role in triggering sugar cravings and binge-eating behaviours. Diets rich in refined sugars and simple carbohydrates play havoc with our blood glucose levels, creating a rollercoaster effect that can further exacerbate sugar cravings and binge- eating while also feeding that
GOOD QUALITY SOURCES OF PROTEIN INCLUDE: • Pasture-raised, ethically sourced grass-fed beef, lamb, chicken and eggs. • Natural, plain yoghurt. • Almonds. • Tempeh (fermented soybean and great for the gut!). • Oily fish such as mackerel, anchovies and wild salmon.
HEALTHY FATS INCLUDE: • Avocado • Raw nuts and seeds (e.g. walnuts, macadamias, pecans, almonds, chia seeds and pumpkin seeds). • Unrefined coconut oil and cold pressed, extra virgin olive oil.
GREAT SOURCES OF SLOWLY DIGESTED, COMPLEX CARBOHYDRATES INCLUDE: • Sweet potato • Brown basmati rice • Quinoa • Buckwheat • Amaranth • Millet
cortisol response. Furthermore, a lack of dietary protein and vitamin and mineral deficiencies such as folate, vitamins B3 and B6 and magnesium can deplete serotonin levels inside the brain. If there is inflammation inside the body, which there often is with chronic stress and poor dietary habits, chemicals released through the inflammatory response can further deplete serotonin levels inside the brain, further depressing mood, encouraging feelings of anxiety and reducing the capacity to emotionally self-regulate. In my practice, I always aim to encourage my clients to follow the strategy of balancing
SOFT BOIL A BATCH OF EGGS TWICE A WEEK AND KEEP THEM IN THE FRIDGE TO ADD TO LUNCHES OR DINNER, OR FOR A PROTEIN HIT AS A SNACK.
their main meals with a combination of protein, slowly digested, complex carbohydrates, healthy fats and with 2 cups of nutrient and antioxidant rich, dark leafy green vegetables. This effectively promotes a sense of satiety, provides important nutrients for energy production and healthy mood and helps to manage sugar cravings.
HOW CAN YOU PRACTICALLY IMPLEMENT THE ABOVE FOODS INTO YOUR MEALS AND SNACKS? When you’re feeling stressed and tired it can be so easy to turn to foods of convenience such as takeaway or pre-packaged meals to save on the mental and physical energy required to cook and clean up. However, doing this regularly not only deprives you of the nutrients that your body and brain needs to function adequately, they also tend to be filled with food additives, hidden sugars and preservatives that can create their own set of issues, compromising your health and wellbeing over the long term. The following ideas can help you get through
such moments while supporting your body in the process. •S et aside 15 minutes twice a week, e.g. a Sunday or a Wednesday, to make batches of a whole grain such as brown rice, buckwheat, quinoa to keep in the fridge and add to your meals as you need (wholegrains existing in their natural form – not as a cereal or bread – have their nutrients intact and aren’t void fibre). Work it into a salad of mixed greens, smoked salmon, tinned tuna, chicken or soft-boiled eggs for a throw together, easy meal. • If time is permitting, you could also prepare a dried salad mix (e.g. grated carrot, spinach, green beans and red onion) on Sunday and ‘dress’ with olive oil and apple cider vinegar upon serving throughout the week. If that seems too much for you with a busy schedule, look for organic, ready to go dark leafy salad mixes at your local supermarket and use these. •S oft boil a batch of eggs twice a week and keep them in the fridge to add to lunches or dinner, or for a protein hit as a snack.
• Add cans of wild salmon, pole and line caught tuna, sardines or mackerel (all rich in omega 3) to your weekly shop. Keep them in the cupboard to add to salads or to ‘throw’ onto a piece of wholegrain sourdough toast (with some leafy greens), perhaps with a seasoning of dried Italian herbs, perhaps with a drizzle of olive oil and a squeeze of lemon juice, for a fast yet balanced breakfast, lunch or dinner. • Keep your fruit bowl full of ready to grab fruit if you’re rushing out the door, make up small containers of raw nuts and keep them in the fridge. When you’re rushing out the door to an appointment with your child pop one these containers, along with a piece of fruit into your bag. Having a snack on hand can ward off hypoglycaemia and consequential sugar cravings while travelling between appointments. Sarah de Visser is a degree qualified Clinical Nutritionist, Massage Therapist and Disability Support Worker with a keen interest in self care and the promotion of mental wellbeing. Visit www.lovingwellness.com.au
More than an ID.
MedicAlert ® is a service that protects you 24/7. The protection of MedicAlert membership + ID could be covered in your NDIS plan. Now a registered NDIS provider. Call 1800 88 22 22 I medicalert.org.au/ndissource
Warning signs that you’re not coping and simple acts of selfcare you can do to help BY DR KELLY BOWERS - CLINICAL PSYCHOLOGIST, YOUTHRIVE INTEGRATED THERAPY SERVICES
Failure to care for ourselves today places us at higher risk of experiencing poor emotional and physical health in the (not so distant) future; including some cancers, heart disease and mental illness, to name a few. Let me introduce you to a new term, psycho-neuro-immunology (PNI). It sounds technical, but in fact it’s quite straight forward. PNI refers to the way that our mind and body is linked. It tells us that if we have a build-up of stress, our nervous and immune systems are placed under pressure, resulting in lower energy levels and lower ability to fight off infections and disease. Even if we are managing to ‘get through’ stressful days, if we do not stop to check-in and rejuvenate, that stress begins to build up. What happens then when we have a few stressful days in a row, or a stressful week, month, or year!? Our immune system is weakened and our effectiveness of caring for our family is lowered. The good news is that these outcomes are highly preventable. Particularly if we are aware of the signs of not coping, and make the choice to prioritise them now.
It is often difficult to recognise the first signs of not coping. Especially when we are flat out and focused on caring for our children. But by being able to recognise these signs, we are in a position to do something about them almost immediately. Some things to watch out for include:
CHANGES TO OUR THINKING ABILITIES
So, how do we prevent these symptoms from occurring? The bottom line is, change starts with ourselves. Self-care is a conscious decision that we make about how we want our lives to be. Make it a priority. Make it non-negotiable. Schedule it. Plan for it. Do it. Remove words like “should” and “ought to” from your vocabulary and replace them with “will” and “am”. For example: I will do something for myself today by engaging in good personal care vs I should take better care of myself. Ask yourself, what is the simplest and best thing that you can do for yourself each day? Ensure that every day you have a shower, brush your hair and teeth, dress in clean clothes, make your bed – these are often the first things we stop when we are not coping. Consistently doing these things each day will start to re-establish good habits and remind yourself that you are important. Achieving these tasks every day (particularly at the start of the day), gives us an immediate sense of accomplishment and puts us on the front foot for focusing on demands of the day ahead. A clean body and a clean environment is the start to a clear mind. Take the time to plan and prepare for how you might bypass any obstacles to the above.
SAY NO TO EXTRA RESPONSIBILITIES. IF YOU’RE NOT COPING, YOU’RE MOST LIKELY ALREADY DOING ENOUGH. ANY REMAINING TIME THAT YOU HAVE LEFT WILL BE ASSIGNED TO YOU AND YOU ALONE.
(PSYCHO-) • Lowered ability to focus or concentrate.
• Lowered memory recall and ability to remember fine details. • Feeling overwhelmed or easily irritated. • Being emotionally reactive to things that you wouldn’t normally be. PHYSICAL CHANGES OR DISCOMFORT
• Increase heart rate. • Breathlessness. • Muscle tension or shaking. • Increased body temperature. • Stomach discomfort. • Regular illness or inability to overcome sickness (immunology).
Where needed, seek counsel from family, friends or professionals. But know this, the only person who is going to work harder on you, is you. Then, when those small habits start to tick into gear and you feel like you are wrestling some control back (this may take some time), gradually start to expand your self-care habits to bigger ticket items. While these are well documented, be sure to follow a similar pattern by making these tasks a priority, scheduling them, planning for them, and doing them. Changing our habits helps to change our stressful thoughts and subsequent changes to our nervous and immune systems. By being more aware of your symptoms of not coping, you are in a powerful position to make change in your daily life. Doing so will not only provide you with increased energy and improved immunity and health, but will ultimately model the importance of caring for and loving yourself to your family. And isn’t this why we do it all in the first place? Youthrive is a unique service offering psychology, speech therapy and occupational therapy all in one place. We work with kids and young people who need some extra help to catch up with their peers – they might need one specialist or an integrated plan for all three. Our team do a thorough assessment and develop an individual plan to equip kids with the skills they need to thrive.
If you’re not coping... where to go for help There’s no shame in admitting that you need help. If you are feeling depressed, anxious, overwhelmed by your feelings or you simply need someone to talk to, these organisations are there to help you:
For urgent help or an instant response service:
IF A LIFE IS IN DANGER CALL 000 IMMEDIATELY. BEYOND BLUE 1300 22 4636 Beyond Blue have trained mental health professionals at the end of a phone line 24 hours/7 days a week. They are there to listen, provide information and advice, and point you in the right direction so you can seek further support. You can also chat online between 3pm and 12am, 7 days a week. The Beyond Blue online forums give you a way to connect with people in a safe and anonymous environment to discuss anxiety, depression, and a range of life issues. www.beyondblue.org.au
Other sources of help and advice
BLACK DOG INSTITUTE Black Dog Institute is dedicated to improving the lives of people affected by depression, bipolar disorder and suicide. They have a number of resources on their website including a range of self-diagnostic and assessment tools to help you understand your own mental health status and a list of support groups around Australia to help you connect with others and share experiences, problems and strategies for coping. www.blackdoginstitute.org.au
CARERS AUSTRALIA Carers Australia has a National Carer Counselling Program that provides shortterm counselling services specifically for carers and can assist you with coping skills. The counselling program is delivered through the state and territory Carers Associations. Your relevant state Carers Association can be found at www. carersaustralia.com.au/about-us/contact
HEAD TO HEALTH With details of 380 mental health services and resources funded by the Australian Government, Head to Health is an online resource to help you find the information, resources, and services that most suit your needs. headtohealth.gov.au
LIFELINE - 13 11 14 Lifeline is a national charity providing Australians experiencing a personal crisis with access to 24-hour crisis support and suicide prevention services.
online and freecall service, providing information, support and referral to people concerned about mental illness; detailed information about treatments, support, and helping yourself and others, and online forums providing peer support for people living with mental illness, family, friends and carers. www.sane.org
MINDSPOT – 1800 61 44 34 The MindSpot Clinic is a free telephone and online service for Australian adults troubled by symptoms of anxiety or depression. They provide free online screening assessments to help you learn about your symptoms, free treatment courses to help you to recover, or they can help you find local services that can help. mindspot.org.au
MENSLINE – 1300 78 99 78 MensLine Australia is the national telephone and online support, information and referral service for men with family and relationship concerns. The service is available from anywhere in Australia and is staffed by professional counsellors, experienced in men’s issues. Their qualified counsellors specialise in family and relationship issues, including relationship breakdown, separation and divorce, parenting, family violence, suicide prevention and emotional well-being. mensline.org.au
SANE AUSTRALIA – 1800 187 263
You can also:
SANE Australia is a national mental health charity working to support all Australians affected by mental illness. They provide a number of services including a national
• Talk to someone you trust • Contact your GP or therapist • Visit the emergency department of your local hospital
Creating a lifetime of opportunities for children with autism At AEIOU Foundation, children with autism aged 2 to 6 receive specialist therapy and care to develop essential life skills that last a lifetime. As a registered provider with the NDIS, we also support families to access the community, through regular workshops and individual planning sessions. Find a centre near you, by visiting www.aeiou.org.au or calling 1300 273 435.
1300 273 435 www.aeiou.org.au www.sourcekids.com.au
Discover the ways our disability services can help your child achieve their goals.
As one of NSW, ACT and the Gold Coastâ€™s largest and most experienced disability providers, we have expertise and skills to help your child acheive their goals and live their best life.
When that moment comes, weâ€™re here. For people with disabilities.
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Apps to help you
manage your mental health
Use your smartphone to help keep your stress and anxiety in check with these apps, to help calm your mind and enhance your wellbeing. These apps can be found in the Australian iTunes Store.
REACHOUT WORRY TIME Do you have worries that won’t go away and that impact your everyday life? ReachOut WorryTime interrupts repetitive thinking by letting you set aside your worries until later, encouraging you to deal with them once a day, rather than carrying them around with you 24/7. When you notice yourself worrying about something, add it to WorryTime, set a time to deal with the worries and get on with your day. Use your allocated WorryTime to review the worries you’ve added and ditch the ones that no longer matter to you.
HAPPIFY Happify aims to help you gain control of your thoughts and feelings, overcoming negative thoughts and building resilience leading to a more positive, happier you. The app provides activities and games employing techniques grounded in positive psychology, mindfulness and cognitive behavioural therapy. Your emotional wellbeing is calculated as a happiness score which you can work to improve upon each week.
PACIFICA Pacifica gives you psychologistdesigned tools to address stress, anxiety and depression based on Cognitive Behavioral Therapy, mindfulness meditation, relaxation, and mood/health tracking. Day-by-day, you’ll learn to manage stress, anxiety and depression at your own pace. The app includes guided self-help paths, a mood tracker, thought recording and journaling, and daily challenges.
MOODPATH With over 350 million people experiencing a depressive episode each year, Moodpath is designed to foster self-awareness and empower people affected. The app will ask you 3 times a day, questions concerning your emotional and physical well-being over the course of 14 days. After the screening you receive a professional assessment of your mental health that you can share and discuss with your GP or therapist. More than 150 videos and psychological exercises are available to help you understand your mood and strengthen your mental health.
CALM Recommended by top psychologists and mental health experts to help you de-stress, this app focuses on meditation, breathing, sleep and relaxation and was selected as Apple’s App of the Year in 2017. There are guided meditation sessions from 3-25 minutes long, sleep stories, breathing programs, music and sounds from nature to help you relax and aid better sleep.
COLORFY Colouring for mindfulness has gone digital! A fun way to take a few moments to yourself and get your mind off the day to day hustle. Paint mandalas, patterns, animals, florals, and more from the Colorfy artists - or upload your own drawings.
HAPPIER Happier is a simple app to help you practice your gratitude skills and find more joy, beauty, and comfort in simple, everyday moments. Use Happier as an on-the-go gratitude journal to record happy moments both big and small – writing down things we appreciate is a scientifically proven way to feel more positive and optimistic.
SELF HELP FOR ANXIETY MANAGEMENT (SAM) SAM will help you to understand what causes your anxiety, monitor your anxious thoughts and behaviour over time and manage your anxiety through self-help exercises and private reflection. You can also access the Social Cloud feature, which enables you to share your experiences with the SAM community while protecting your identity.
MUSIC ESCAPE This app lets you use your own playlists to help you feel better; Use Music eScape to create a mood map of your music library and develop dynamic playlists to match your music to your mood. You can create or select a music journey to express, enhance or change your mood. With just the swipe of a finger you can draw a music journey starting at how you currently feel and ending at how you want to feel. Have fun and use the power of music to help you take charge of your feelings. It’s as simple as that.
REACHOUT BREATHE ReachOut Breathe helps you reduce the physical symptoms of stress and anxiety by slowing down your breathing and your heart rate with your iPhone or Apple Watch. Research shows that slowing your heart rate can increase feelings of calmness in your body. Using simple visuals, ReachOut Breathe helps you to control your breath and measures your heart rate in real-time using the camera in your phone. This means that you can actively address the onset of physical stress symptoms such as shortness of breath, increased heart rate and a tightening of the chest.
Take care of yourself too MyTime groups connect you to other parents of children with disabilities. Find support from people who really understand. Join today www.mytime.net.au
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Junior pendants made from non-toxic silicone • Praised by occupational therapists. • Great tool for sensory processing, providing relief for children with sensory needs. • Cool pendant designs and our necklaces are fun for all children to wear. • Fitted with a breakaway clasp for added safety. • Designed by an Aussie mum for Aussie kids.
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Who Cares for the Carers? The Carers Foundation Australia is passionate about caring for family carers and offers unique wellness programs to support Carers physical and mental health. We are the only charity that actively fundraises to to give Carers some time out. We know and understand that carers spend all their time looking after their loved ones, and have very little time for themselves, which ultimately impacts on their own mental and physical wellbeing.
We believe all Carers are Superhumans, however sometimes your superpowers need recharging. Our unique wellness programs provide carers with the opportunity to rest and rejuvenate while also learning new coping strategies for long term resilience. Plus we have on site professional support from natural therapists and counsellors. Our venue is set in a tranquil healing environment amongst nature, to allow you to restore your own wellbeing and energy.
handle stress, as we understand how difficult it can be for young carers.
We are also passionate about young carers from 13 -20 years old, which are often siblings to the child you are caring for. Our unique program provides support and education about resilience, empowerment and simple effective tools to
If you are a Carer, Social Worker, GP, Support Coordinator, Service Provider or just a great friend, please contact The Carers Foundation Australia to find out more about our services to support Carers.
If you child is in a caring role and needs a break to be with other kids in similar situations, with kids that really understand, please contact us about our programs at no cost to eligible young carers.
P. 07 3289 4552
email@example.com 973 Cedar Creek Road, Cedar Creek, 4520
! thecarersfoundation $ carersfoundation $ youngcarersaustralia " wecare4carers
DID YOU KNOW...
ABOUT THE CARERS FOUNDATION AUSTRALIA
Special needs parents – if there’s one thing we’re good at it’s getting stuff done. This often means juggling a dozen different tasks at once while anticipating our child’s needs, attending to their health concerns, worrying about what’s coming up in the future and...well the list goes on. All of this superhuman effort often comes at the expense of our own needs however. Carers can too easily forget to take care of themselves and while we all just get through somehow, we all need to take a break every now and again.
SO, WHO IS CARING FOR THE CARERS? There are over three million people living in Australia who provide unpaid help and support to a family member or friend and currently there is no dedicated wellbeing centre for family carers. One organisation
working to change this is The Carers Foundation Australia, which has been established in direct response to the growing number of carers in the community and the shortage of respite available to support them. There are many amazing organisations which support those that are being cared for, but the issues facing the carers themselves are not being addressed on any comprehensive or widespread scale or in a way that is simple to access.
family carers on a wider, more permanent scale.
Founding Director of the Carers Foundation, Ronnie Benbow, has had a burning passion for over a decade to change this by providing a healing, nurturing centre to rejuvenate and educate family carers experiencing extreme stress and exhaustion. Having a professional background in health care and personal caring circumstances, Ronnie knows professionally and personally the relentless demands and debilitating stress that family carers endure daily.
Ronnie is also passionate about caring for our younger carers, often the siblings of children with a disability, who miss out on so much of their childhood and teenage years. Most of these young people have mental health issues that are not addressed or recognised. The Foundation also have specialised wellness programs for these young people to inspire, empower, learn unique stress management skills, be with other kids in similar situations that completely understand, make new friends, and just have some ‘fun’.
Over the past 14 years, the co-founders have been personally funding carer rejuvenation breaks at a private retreat in a tranquil natural environment, north west of Brisbane. The programs at the retreat range from one day or multiple days allowing carers to have a period of relaxation, learn new stress management techniques, meet new friends and be with other carers in similar circumstances. Art therapy, mindfulness sessions, meditation and counselling are on offer as well as the opportunity for people to just be alone, walk to the creek and enjoy the beauty of the surroundings. The space used for the retreats in Brisbane is currently leased and the Foundation has identified the increasing need to support
The goal is to establish a purpose built, inspirational and nurturing centre that is available 24/7 allowing carers of all ages, culture and circumstance the opportunity to regain their mental and physical health through unique programs focussed on health rejuvenation, acknowledgment, empowerment, wellness education and regular, quality relief.
Although based in Queensland, with the initial centre in Brisbane, carers are welcome from all over the country and the organisation’s vision is to replicate the Carers Foundation Australia Education and Wellness Support Centres nationally
To find out more about the Foundation, the retreats that they currently run and how you can support them towards their goal visit www.thecarersfoundation.org
WHERE CAN YOU GO TO REST AND RESET CLOSER TO HOME? A relaxing, restorative stay at one of the beautifully luxurious health and wellness retreats around Australia can be an out of reach dream for many of us, however, there are more economical options out there. Here are some ideas to get you started:
REST AND RESET RETREAT Tanya Savva is a special-needs mama, wellness and life coach, yoga and mindfulness teacher, occupational therapist and remedial massage therapist. Her rest and reset retreat is a beautiful two day/ two night retreat specifically developed for special mamas offering love and care to children living with additional needs. Visit www.tanyasavva.com/rest-reset-retreat/ for more information.
JOYLAND CARERS RETREAT Joyland is a respite and retreat located 300 metres from the beach at Korora, just nine minutes north of Coffs Harbour where you can totally relax from your caring role. The owner, Ellen, has been a carer her whole life and provides an opportunity for self-care in a restful and peaceful atmosphere. You'll enjoy home cooked meals and days to sleep and rest, chat, laugh, relax or soak in a French tub. You can spend your time driving through the country, enjoying picnics on
the beach, or taking in the delights of Coffs Harbour. Visit www.joylandcarersretreat.com.au for more information.
CARERS AUSTRALIA WA â€“ ANNE BLUNTISH CARERS RETREAT Located in South Perth, The Anne Bluntish Carers Retreat is a two-bedroom apartment overlooking the Swan River and Perth City. The apartment can accommodate up to four people and is walking distance to the ferry and Perth Zoo. It is open to carers over the age of 18 years who provide ongoing care and support to a family member or friend. The apartment can be booked for either 3 or 6 nights. Bookings can be made up to 6 months in advance. To book, please contact the Carers WA Events Team on 1300 227 377 or email firstname.lastname@example.org.
WELLBEING RETREATS Based on the NSW Central Coast, Wellbeing Retreats offer a variety of wellbeing day programs and live-in retreats for carers run by qualified Wellbeing Facilitators with extensive experience in supporting and nurturing carer groups. They provide a nurturing environment where individuals can take some time out for themselves to relax and recharge. Participants learn a variety of stress relieving, health enhancing modalities in an enjoyable and interactive way. For more information call 0410 158 098 or email email@example.com.
GREEN GYM FOR CARERS Green Gym is a free outdoor program for carers hosted by Conservation Volunteers Australia in Newcastleâ€™s
Glenrock State Conservation Area. Activities include habitat hikes, tree planting and weed removal. Green Gym for Carers improves health and wellbeing by reducing stress, being active and providing you with valuable time out for yourself. Transport is available from a central meeting point. Visit conservationvolunteers.com.au/greengym/ for more information.
CARERS NSW THERAPEUTIC COUNSELLING GROUPS Therapeutic Counselling Groups provide carers with an opportunity to explore the emotional impact of caring in a group setting, identify ways of managing everyday life and share experiences with people who are in similar situations. The free groups run over a course of six weeks and are facilitated by professionally trained counsellors either in person or over the phone. More information can be found online at www.carersnsw.org.au/newsevents/events/counselling
MYTIME GROUPS Meet other parents and family carers of children with disabilities. MyTime is a place to socialise, to discuss, to get information, and to support and be supported by other carers. All MyTime groups have a trained facilitator, who helps group members get to know each other and learn more about local resources and support services. You can bring your preschool-age children to MyTime. While you unwind, children are kept engaged nearby by MyTime play helpers. Find out more at www.mytime.net.au
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PRACTICAL WAYS TO HELP A SPECIAL
NEEDS PARENT When your child has a disability, it can often feel that it’s just you and your family against the world. We aren’t always great at asking for assistance and it can sometimes be hard to actually verbalise or work out exactly what’s needed at any given time. Also, friends and family may want to help out but they simply don’t know what you need, what’s going to help the most or they may simply be worried about getting in the way or causing offence. Here are some practical ideas you could pass on to friends to let them know how they can help take the load off.
REACH OUT Simple gestures like a call, message or email to say hello helps keep the communication open. Your friend or family member may feel like they are burdening others with their problems, so may not instinctively reach out to you. You can show them that you are willing to learn, adjust and try to be beside them as they navigate all their new challenges. It will make such a huge difference to them knowing they are not alone on their journey. Be sure to invite them and their child to events too, even if they decline the invitation. The fact that you remembered them sends a positive message.
VISIT THEM Just like any other family, your loved one is most likely happy to have visitors so clear some time in your own schedule and go and
see them. Just check in advance when would be a good time to call in! In doing this, you are helping a special needs parent to stay connected to the world, and relieving some of the isolation which can come with having a child with high care needs.
BE OPEN TO LEARNING Ask questions and show that you are willing to learn about their child’s disorder. This will help you to support the parents more effectively with what they really need. Read about their child’s diagnosis, their symptoms, treatment and what the parents may be experiencing. You may find that your loved ones are then more willing to open up to you and let you into their world.
OFFER TO WATCH THEIR OTHER CHILDREN
HELP WITH HOUSEWORK AND ERRANDS When you have a child with special needs, simple housework tasks and errands that are usually second nature become much more complicated. Not to mention, pretty low on the list of priorities. A quick trip to the supermarket becomes a time-consuming task or there may be very little energy left at the end of the day for any chores around the house. Offer some help in any way you can.
HELP THEM CELEBRATE Celebrations bring people together. Make sure you take the time to celebrate and acknowledge the successes of special needs children too, even if they don’t look quite the same as those of your own children, they are hugely significant accomplishments and milestones.
Children with additional needs often require most of the attention within a family, with the days and weeks focused around appointments, routines, medical care and other non-negotiables. Any other children in the family learn to adjust but they have needs too. This is where you come in. By offering to watch or spend time with the other children in the family, you are giving these children some special attention, just for them. They and their parents will be most grateful.
Cooking and food preparation quickly slips to the bottom of the list when challenges occur in a family’s life. And we all know that not having to worry about what’s for dinner helps the day run more smoothly. So showing up with some food, nothing fancy required, will always be appreciated.
JUST LISTEN Offering a listening ear helps special needs parents to know they are not alone. It shows you are willing to learn, understand and support, and that you are available. That makes a significant difference.
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CELEBRATING 40 YEARS
Cox FAMILY PROFILE
OUR FAMILY CONSISTS OF TWO ADULTS AND TWO KIDS. OUR KIDS ARE 5 AND 2 – ERICA AND ARIANNA. I AM A KIWI AND PAPA IS ITALIAN BUT NOW AN AUSTRALIAN CITIZEN.
family Sotos also affects her in some positive ways – she is a happy girl and very sweet and affectionate. She sleeps very well now that health issues have subsided. She used to have sleep apnoea but has overcome this. It may not be part of her diagnosis, but she is very strong and determined.
WHERE DO YOU LIVE? We live in Five Dock, Sydney. It’s a great area with a strong Italian community and full of families. We are blessed to be part of a nice community.
WHAT IS YOUR CHILD’S DIAGNOSIS AND HOW DOES IT AFFECT THEM? Arianna, two, has Sotos syndrome, an overgrowth syndrome which comes with early bone growth meaning she is a lot taller than other kids and has developmental delays. She didn’t walk until 23 months and has a tube for feeding. Recently she has also developed scoliosis so has to wear a brace. Her first seven weeks of life were spent in NICU with low blood sugars; she has something called hyperinsulinemia, so we knew there was something going on. She has low muscle tone (hypotonia) and is pre-verbal. She makes a lot of babbling sounds and the odd word approximation comes out but she is not yet talking. She suffers from a lot of respiratory infections and seems to have poor lungs. She used to be hospitalised often but she’s got stronger over time, although colds drag on for weeks and weeks.
WHAT LED TO THE DIAGNOSIS? On my last scan at 37 weeks, Arianna was found to have enlarged ventricles in her brain. They couldn’t tell me why or what that meant but it was very scary. They mentioned things like autism and CP, or said it could be nothing. We had no idea what to expect. She was measuring big and they monitored her heart after that and I had a c-section at 38 weeks. A paediatrician was on stand-by and noted she had low blood sugars. I was then transferred to Randwick children’s hospital NICU and we spent seven weeks there whilst they got her sugars under control and tried to work on what was ‘wrong’. It was an awful time. She couldn’t feed properly and had low tone. She had dysmorphic features – large ears, long fingers and a flat nasal bridge. Genetics was not sure what it was though. The next year was a roller coaster of tests and hospitalisations with an emergency surgery for fluid on the heart included in the mix. Over time as her height became more obvious along with her large head, genetics ran a gene panel associated with those features and when she was 20 months old it came back positive for Sotos syndrome.
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IS YOUR CHILD IN SCHOOL? HOW ARE THEY DOING/HOW ARE THEY SUPPORTED? Arianna is in a day care that mainly has typically developing children attending but can also cater for children with additional needs. They have a speech therapist and an OT at the centre for advice. My therapists also go in and advise them on our particular goals for Arianna and how to help her. They originally got a supported seat for her but she quickly outgrew the need for that and now walks around, albeit a bit like a drunken four-year-old. They help include her and use signs and pictures to help Arianna communicate whilst she is learning to vocalise.
WHAT THERAPIES DOES YOUR CHILD DO? DO YOU HAVE ANY TIPS/TRICKS FOR FITTING THERAPY INTO YOUR LIFE? We currently have the following: • OT monthly • PT monthly • Speech therapist who specialises in PROMPT therapy, weekly • Conductive Education, every two weeks • Music therapy weekly – we’ve just recently started this! We have one big goal at a time with therapy. It was originally walking, so PT was the main focus of NDIS funding and my time at home. Now she is walking it has switched to speech. I find I can’t focus on all the goals at once, it is overwhelming, so I only focus on a key area at home. It also helps in terms of directing NDIS funding, which is not unlimited.
WHAT CURRENT GOALS DOES YOUR CHILD OR YOUR FAMILY HAVE? Currently our focus is on helping Arianna to communicate. We do PROMPT therapy weekly as that seems to help children who have Sotos syndrome with making sounds. Her receptive language is much better than her expressive. We would also like to get her G-Tube removed too as she is eating most foods now. We just need her to be
more confident drinking liquids. We also need to help her tolerate her brace which she wears for scoliosis and will need to wear throughout her childhood. If not she will need casting or multiple surgeries. As a family we try to take each day at a time and enjoy time together. We would like to have more time as a couple, Alberto and I, as we have no family in the country. We are working on solutions to give us more 1-1 time when the children are at school such as perhaps he takes a Friday off occasionally and we see a movie during the day.
WHAT ADVICE WOULD YOU SHARE WITH SOMEONE STARTING OUT ON THE SPECIAL NEEDS JOURNEY? This is not an easy life, but it can be a very meaningful life. You will get angry, sad, grieve and wonder why us, why my child… but over time those feelings subside and you learn to adapt. You will find your gratitude and see your child as a life changing gift. Reach out to other parents in the same boat, you are not alone. I heard this the other day and I loved it – focus on how you can help your child reach their potential, not on when will they walk, or talk. I think that is great advice. Don’t forget about you and your goals. You are important too and you need to create a balance between being a carer and being you! Don’t lose yourself in this identity. I work part-time and that helps me get my head out of all things special needs all the time. It is a steep learning curve learning all the jargon around medical things and therapy and it will consume you in the beginning, which is normal and necessary, but over time becomes less consuming I think. It is still early days for us too as Arianna is only two.
AND WHAT’S THE MOST ANNOYING/UNHELPFUL/ STRANGE ADVICE YOU’VE EVEN BEEN GIVEN? ‘Don’t dwell on it’ – probably the worst thing you say to someone going through anything as it completely invalidates their feelings and
makes it sound like something trivial.
WHAT DO YOU DO FOR YOU TIME? I have my Facebook page ‘Arianna’s Army’ which I do to help advocate for children and families with special needs and tell my daughter’s story. I work part-time in Marketing for a small agency. I like to watch CNN as I am a bit of a news junkie and get lost in the political dramas.
WHAT ARE YOUR HOPES FOR THE FUTURE? I hope the world is more inclusive and understanding of people with special needs. I hope there is more support for special needs families and what they go through and things like the NDIS don’t have to be such a fight. I hope there are more cures for some of the particularly tough genetic diseases out there that can rob children of so much – sometimes their life. I hope people see value in my child and people with special needs and celebrate Arianna’s gifts instead of measuring her against what she is not yet able to do.
PRODUCTS WE LOVE: Mighty Able – A clothing store which has T-Shirts with slogans I love that advocate for people with special needs. Ones like ‘Prove them wrong’, ‘Choose Inclusion’, ‘Mighty Rare’ and ‘Born to stand out’. www.mightyable.com Super Power Baby Project – a book showcasing children with special needs which focuses on what they CAN do, not what they CAN’T. www.superpowerbabyproject.org
PEOPLE (OR BUSINESSES) WE LOVE: The Miracle Project - Miracle Mamma by Natalie Roberts-Mazzeo. She supports families with special needs. www.miraclemama.com.au The One in a Million Baby project – by Tessa Prebble. She has done some great podcasts raising awareness of families with special needs children, which are very inspiring. In the early days I worked through my grief listening to these and shedding a few tears. www.theoneinamillionbaby.com
Allowah provides Disability Support services for children aged 0 - 18 years with complex disabilities and medical conditions.
disability support services
Complex Disability and Health Provider
• Short term accommodation Planned or Emergency • School Holiday programs • Post surgery care • Early intervention • Therapy Services • After school care • Support Coordination (children and adults with complex needs) • Many other supports including Assessments, Equipment advice and so much more
Allowah 8 Perry St Dundas Valley NSW 2117 02 8877 3400 firstname.lastname@example.org
SHINE intensive program
Ensuring all kids get the opportunity to keep up with their mates in the classroom. Learn more at variety.org.au/vic
Plan for summer with Tiralo 2 – the 3-in-1 beach wheelchair · Waterside access · Sun couch · Floatation device (you actually get wet!)
www.avantinnovations.com.au Phone: +61 2 8315 2834
N O WHAT'S S T N E V E F O R A D CALEN
SEPTEMBER 4-30 Steptember – take 10,000 steps a day to support people living with cerebral palsy. www.steptember.org.au 13 R U OK? Day www.ruok.org.au 22 Justine Clarke Silly Songs Tour www.sydneyoperahouse. com/events/ 23 International Day of Sign Languages
OCTOBER 1-31 Down Syndrome Awareness Month
SYDNEY OPERA HOUSE: ACCESSIBLE PERFORMANCES 3 Bambert’s Book of Lost Stories– Audio described and touch tour 6 Bambert’s Book of Lost Stories – Relaxed performance (11am), Auslan interpreted performance (2:15pm) 11 The Snow Dragon – Auslan interpreted performance 12 The Snow Dragon – Relaxed performance 13 Yo Diddle Diddle – Relaxed performance 14 Yo Diddle Diddle – Auslan interpreted performance www.sydneyoperahouse. com/events
15-21 National Carers Week – events taking place around Australia. www.carersweek.com.au/ events 19 Loud Shirt Day – get loud for deaf and hearing impaired children. www.loudshirtday.com.au
DISABLED SURFERS DAYS 20 Evans Head Main Beach
27 Jetty Beach Coffs Harbour disabledsurfers.org/eventscalendar
NOVEMBER 2-4 NSW Wheelchair Tennis Open, City Community Tennis, Prince Alfred Park Surry Hills 13
World Kindness Day
16 Starlight Children’s Foundation Kick for Kids tournament starlight.org.au/kick-for-kidssoccer-tournament
DISABLED SURFERS DAYS 6
World Cerebral Palsy Day
World Mental Health Day
10 Children’s Access Workshop: Shake it Up – free artmaking activity for children with specific needs and their families and carers. Art Gallery, NSW. Bookings and enquiries: 02 9225 1740.
17 Turners Beach, Yamba Keenan Klassic) 24 Disabled Surfers Hands on Day – Main Beach, Woolgoolga 25 Moana Surf Life Saving Club disabledsurfers.org/eventscalendar
19 SOURCE KIDS SUMMER ISSUE COMES OUT!
Apps to help your ls il k s fe li n r a le d il h c
WE LOVE HOW TECHNOLOGY CAN HELP OUR CHILDREN IN THEIR DAILY LIVES. HERE ARE A WHOLE HOST OF APPS TO HELP WITH THE DEVELOPMENT OF CRUCIAL LIFE SKILLS SUCH AS HYGIENE, COMMUNITY EXPERIENCES, SOCIAL SKILLS, SAFETY AND MORE.
DUCKIE DECK GOTTA GO Without further a “do”, may we present Duckie Deck Gotta Go – the app that shows kids all the fun and important steps of going number two. It’s perfect for advanced toilet training and practicing healthy hygienic habits, and also delivers some giggles along the way. Start out with a vibrant snack and a hungry little monster. After munching down, rub the belly to get digestive juices flowing, and watch as a colourful parcel is deposited in the loo. Then flush and help the parcel find its way through the complex plumbing. Don’t forget to wipe up afterwards!
THE SOCIAL EXPRESS II The Social Express® an is engaging, educational curriculum for children and young adults with social learning challenges. The curriculum is designed to teach users how to think about and manage social situations, helping them to develop meaningful social relationships and succeed in life. The Social Express II app has two options. Try it or Member Login. Try it is a free app or sign up for a recurring membership fee.
LIVING SAFELY Living Safely provides self-directed learning sessions for 27 important safety skills topics based on proven content developed by the Attainment Company. Living Safely provides an accessible learning tool that is specifically designed to be used directly by individuals with autism, learning or other developmental disabilities at their own pace. Anyone who needs support with understanding important safety skills necessary for daily living can benefit from the simplicity and self-directed nature of Living Safely. Topics covered include bathroom safety, fire safety, doing dishes by hand, getting lost, sun safety and more.
iDO GETTING DRESSED This uses the same format as the iDo Hygiene app with the focus on learning the most common personal dressing activities (putting on socks and shoes, preparing clothes for tomorrow, getting dressed, undress etc.).
iTOUCHILEARN LIFE SKILLS: MORNING ROUTINES FOR PRESCHOOL KIDS Immerse your child into the virtual world of morning routines. Each routine contains a unique activity that must be completed to move on to the next routine. After successfully completing each morning routine, players receive star rewards and play in the rewards play space. All apps can be found in the Australian itunes store
l a t i g i d t Ge
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#inspiration #motivation #specialneeds
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THE HUMBLE BOARD GAME CAN BE MUCH MORE THAN JUST THAT. NOT ONLY CAN THESE GAMES PROVIDE HOURS OF ENTERTAINMENT FOR YOUR FAMILY, BUT SOME ALSO ALLOW YOUR CHILD TO WORK ON DEVELOPMENTAL ISSUES AT THE SAME TIME.
BOARD GAMES TO GET KIDS
RKING W& OMOVING
HOPSCOTCH Hopscotch can be played on a DIY mat (think felt and a glue gun if you’re feeling crafty), or one ordered online. Otherwise, go back to basics and use some tape on the floor or chalk outside on the driveway or in the courtyard. Great for: Gross motor and coordination skills, numeracy skills and social skills.
JENGA Jenga requires players to pull out a block at a time from the tower, without making the structure tumble down. It requires players to be aware and focused and, importantly, in control of their actions. Great for: Fine-motor skills, selfmonitoring, flexible thinking and impulse control.
TWISTER Twister is a classic family game that gets kids moving and laughing too as everyone gets tangled up in knots! It’s fun to play, entertaining to watch, and it helps to teach children the difference between left and right. Great for: Gross motor and coordination skills, social skills, flexible thinking and forward planning.
A little like Bingo, this fast-paced game gets players to match pictures. By sliding the Zinger, they reveal two tiles that may match the images on their cards. Great for: Visual motor and perceptual skills, fine motor and grasping skills and social skills. Zingo can also be used to help with speech and language development.
GUESS WHO? This is a family classic that has stood the test of time. The object of ‘Guess Who’ is to be the first to identify the person on your opponent’s chosen card. By asking yes or no questions, you try to figure out who is on the mystery card. Great for: Improving visual motor and visual perceptual skills, organisational skills, focus, and attention. Through the asking of questions, it also aids language development, information processing and social skills.
Connect Four provides an opportunity for children to develop their skills in strategy. It requires planning to get four of the same coloured discs in a row in any direction (horizontally, vertically or diagonally). To win, a player has to think both critically and logically, while also focusing on what their opponent is doing. Great for: Developing the skills of divided attention, critical thinking and forward planning.
IS IT TIME FOR A FAMILY BOARD GAME AFTERNOON SOON? YOUR KIDS WILL BE HAVING SO MUCH FUN THEY WON’T EVEN NOTICE THEY'RE LEARNING. AND YOU’LL FEEL GOOD KNOWING YOU’RE HELPING THEIR DEVELOPMENT THROUGH PLAY.
ESSENTIAL ITEMS FOR YOUR CHILD’S
Everybody needs a sensory break sometimes, especially children with special needs who may need support to regulate their emotions and develop concentration. Decompressing can help a child to process and refocus and aid in managing meltdowns and anxiety. This is when a sensory box comes in handy. But, how do you navigate all the products on the market for kids with sensory issues?
WE’VE ROUNDED UP A LIST OF ESSENTIALS TO POP IN A SENSORY BOX. BE SURE TO ALWAYS TAKE YOUR CHILD’S INDIVIDUAL NEEDS AND ABILITIES INTO CONSIDERATION, BUT HERE ARE SIX ITEMS TO GET YOU STARTED.
Movement is a great sensory filter, so items like a stretchy band, tubing, sack, or fabric tunnel are just right for your sensory box. Encourage imaginative play while pulling and stretching, do some partner resistance work or have a miniworkout with the stretchy items in your box. For tunnels, resistance bands and more head to www.bodysocks.com.au
Some sensory kids feel the need to chew on things, so in a personal sensory box, a chewy can be a great stress reducer. The actions of sipping, chewing, biting, blowing, and sucking all act as great filters when it comes to sensory processing. You can purchase chew toys specially designed to be chewed on, such as chewable jewellery, pencil toppers or wristbands. Ninja Babies - ninjababies.com.au have an awesome range of products for all levels of chewers.
Hand-eye coordination and eye tracking do wonders for sensory regulation. You can toss and catch items such as small beanbags, a ball maze or juggling scarves. A small mirror or light-up toy will also please the sense of sight. You can also use an item to help with eye tracking from side to side. Check out Hart Sport www.hartsport.com.au for a range of different bean bags for little hands.
Not all kids like weighted items, but they can be an excellent option for some children. Weighted blankets, cape or neck curves, bean bags or weighted stuffed animals are all good options. Crayte – www.crayte.com.au has a range of weighted blankets and cushions that are beautiful as well as functional.
Your sensory box should include something to do with your hands, such as putty, a stress ball, or a fidget tool. Fidget toys can be beneficial to encourage focus. There are plenty of easy and affordable homemade options, or you can purchase fidget balls, chewable fidgets and manipulatives. Knobby balls, stretchy snakes and playdough are particularly effective and also affordable. My Diffabilty – www.mydiffability.com.au has a huge range of fidgets and tactile objects to choose from.
Touch & explore
Sensory exploration is important, which might mean a squishy toy, a spiky massage ball, soft pieces of fabric or scarves, or a weighted bean bag. Work with your child’s preferences to include soft or hard items, or those with multiple textures to encourage exploration. Take a look at the range of sensory items on offer at sensorytools.net
Have fun popping together a sensory box that’s just right for your child and can help them to concentrate and regulate their emotions more effectively. SPRING 2018
NINJA BABIES DESIGNER CHEWABLE JEWELLERY
SENSORY RESOURCES & EDUCATIONAL TOOLS
Skin care Advanced bedding protection Bedwetting alarms
Underwear washable & disposable
For Kids Continence Care Needs www.aleva.com.au Call us 1300 253 821
REGISTERED NDIS PROVIDER
USE ‘SOURCEKIDS’ CODE FOR 10% DISCOUNT
HEALTHY ALTERNATIVES · AGE & SOCIALLY APPROPRIATE IMPROVE SELF-REGULATION, CONCENTRATION & PARTICIPATION
UNISEX STYLISH PRODUCT TO ASSIST WITH AUTISM ADHD FIDGETING
SUCKING MOUTHING CHEWING
BITING STRESS & ANXIETY SENSORY PROCESSING
BASED ON THE SUNSHINE COAST, QLD, AUSTRALIA
A place where different abilities are celebrated!
y my diffabilit australia
Advancing Skin Health Every Day
MY DIFF We are an online supplier of therapy equipment, toys and resources for people with different abilities. Our products are carefully selected to assist in the development of skills in a wide range of areas, and are also motivating and engaging for endless fun! Our product categories include: Sensory, Oral Motor, Fidgets, Fine Motor, Gross Motor, Social Skills, Play, Books, Gifts, Communication / Educational, Timers / Schedules... and more!
PO Box 3121, Caroline Springs, VIC 3023
(03) 8456 6613 e. email@example.com
Remedy Phytoplex® is a combination of allnatural, plant-based ingredients, including soy, algae extracts, green tea, and cloves. Rich in natural oils, soothing antioxidants and encapsulated oleosomes. Nourishes skin with proteins, vitamins, essential fatty acids and carbohydrates. Choice of Cleansers, Moisturisers, and Barrier Cream. Because of its unique blend of gentle ingredients, Remedy Phytoplex® is perfect for people with sensitive skin. Can be purchased through BrightSky Australia.
Phone 1800 110 511 www.medline.com.au
SAVE THE DATES SYDNEY
8-9 MAY 2019
NOW TWO DAYS
15-16 MAY 2019 CANBERRA
27-28 AUG 2019 PART OF
For more information contact Allison Miller on (02) 4646 1453 or firstname.lastname@example.org
The Walking Specialists A posterior walking aid which promotes upright posture and natural walking movements. • • • •
Grows with you – Height, Vertical & Horizontal adjustment. Available in 4 sizes – to support up to 100kg Wide range of colours Strong & reliable – Made in Germany
A posterior walking aid that provides partial weight bearing postural support with mobility. • •
Allows you to walk around freely and unaided. Designed to meet mild, mod-erate and complex users.
A unique weight-tailored spring-suspension that helps natural gait development. •
Easy transfers with a built-in swing bar that lowers and raises the seat and trunk support. Grows with you with a Universal Trunk support system.
Contact us to arrange your free trial
email@example.com or visit us online www.dejay.com.au
TYPE M = A = P = G =
Walkers play a key role in the physical development of many children with additional needs and come in a range of types from mobile to posterior and are suitable for a range of users from 12 months to adults.
Mobile Anterior Posterior Gait Trainer
All featured Walkers have a seat that comes with product.
THIS ISSUE WE TAKE A LOOK AT ALL THINGS WALKERS AND REVIEW THE LATEST OPTIONS ON THE MARKET.
M, P & G
Active Rehab, Dejay Medical, PME Group, Special Needs Solutions
The Crocodile Walker gives the user the freedom to move with this very stable, versatile walker. The walker can be used in a variety of environments. AGE RANGE
18 months to 18 years
Up to 80kg
Up to 180cm
Frame & Handle
Up to 100kg
Frame & Handle
Size 1: 42cm-56cm
Size 1: 62cm
Size 2: 55cm-69cm
Size 3: 69cm
Size 3: 69cm-87cm
Chest, Forearm, Hip
Size 2: 69cm
M, P & G
Active Rehab, Dejay Medical, PME Group, Special Needs Solutions The FLUX Walker is a posterior walking aid which promotes upright posture and natural walking movements. It grows with the user as it is the only walker with height, vertical and horizontal adjustment. Available in 4 sizes.
The Grillo is available in 4 different sizes and can be set up in 7 different configurations. The one frame can be used as either a posterior or anterior walker. It has tool free adjustment and is collapsible for easy transport.
Up to 110kg
Up to 100kg
Frame & Handle
Mini:5 7cm Small: 65cm Medium: 76cm Large: 80cm
Mini: 51cm-75cm Small: 69cm-100cm Medium: 76cm-125cm Large: 81cm to 143cm
Frame & Handle BRAKES
Chest, Forearm, Hip
M, A, P & G
Handi Rehab, PME
A, P & G
R82 Australia, Special Needs Solutions
The Buddy Roamer is a posterior walking aid that provides partial weight bearing postural support with mobility. It allows the user to walk around freely and unaided. Designed to meet mild, moderate and complex users. Available in 4 sizes.
M, P & G
Active Rehab, Dejay Medical, PME Group, Special Needs Solutions
Up to 130kg
KAYE SUPPORT WALKER PME Group The range of Kaye Support Walkers are height adjustable, folding and mobile walking frames. They are designed either as an anterior or posterior walker, and assist to make walking more energy efficient by improving postural alignment.
The Meywalk Walker has a unique spring suspension system which stimulates the muscles of the participant and promotes natural gait movement. Easy transfer with the built-in swing bar that lowers and raises the seat and trunk support. Available in 4 sizes. Ideal for wheelchair dependent people of all ages. AGE RANGE
Up to 113kg
Frame & Handle
One way ratchet wheels
Chest, Forearm, Hip
MUSTANG GAIT TRAINER
M, A, P & G
R82 Australia, Special Needs Solutions
The KidWalk dynamic walking aid allows children with severe disabilities to move about without the help of others. Not only does the KidWalk provide stable pelvis and trunk support, it also permits walking with a largely natural gait pattern – at eye level with other children.
The Mustang Gait Trainer provides whole-body alignment by holding the pelvis securely with its ratcheting hip support and encourage stepping with the ability to change the forward lean.
Up to 12 years
Up to 40kg
Frame & Handle
Size 1: 82.5cm Size 2: 93cm
Size 1: 60cm Size 2: 68.8cm
18 months to 18 years
Up to 80kg
Up to 168cm
Frame & Handle
Size 1: 52cm Size 2: 58cm Size 3: 65cm Size 4: 70cm
Size 1:49cm-65cm Size 2: 60cm-85cm Size 3: 70cm-105cm Size 4: 87cm-130cm
Chest, Forearm, Hip
MyWay has a revolutionary harness support system which delivers quality, clinically sound movement. MyWay’s open-frame design increases opportunity for development and learning and also allows therapists to work with the child whilst they are in the product.
The Nimbo posterior Walker supports the user from behind – encouraging them to adopt a more upright posture, and help promotes trunk extension. The Nimbo Walker easily adjusts for height, as the user grows.
Up to 125kg
12 months to 16 years
Up to 80kg
Frame & Handle
92cm-149.5cm (over 3 frame sizes)
57cm-72cm (over 3 frame sizes)
Tyke: 36.5cm-47cm Junior: 48cm-63.5cm Youth: 58cm-77cm Young Adult: 72cm-91cm Adult: 91cm-104cm
Tyke: 53cm Junior: 55.5cm Youth: 63.5cm Young Adult: 64cm Adult: 74cm
NURMI NEO WALKER
M, A & G
Special Needs Solutions
Designed for everyday use, the Nurmi Neo turns on a dime and can easily reverse to get out of tight corners. The Nurmi Neo is a great walker for those children who walk but need a little extra support.
The Crocodile Walker gives the user the freedom to move with this very stable, versatile walker. The walker can be used in a variety of environments.
Up to 12 years
Up to 55kg
18 months to 12 year
Up to 50kg
Friction brake optional
Up to 77cm
No FRAME WIDTH
Size 1: 45cm-57cm Size 2: 58cm-72cm Size 3: 64cm-85cm
Size 1: 63cm Size 2: 68cm Size 3: 72cm
Size 0: 52cm-69cm Size 0: 59cm Size 1: 60cm-82cm Size 1: 69cm Size 2: 68cm-104cm Size 2: 77cm
Chest, Forearm, Hip
A, P & G
A, P & G
PME Group, Special Needs Solutions
The Rifton E-Pacer combines the powerful electric lift column and secure body support with key gait training features. The E-Pacer offers zero lift transfers – to safely transfer larger, or heavier clients, or those clients who require greater support to be mobile.
The Rifton Pacer Gait Trainer is a very versatile, adaptable and durable mobility aid. Renowned for its modular design, the Rifton Pacer Gait Trainer provides excellent support for those learning to walk, maintaining momentum and building muscle skills.
Young adults to adults
Up to 158.8kg
Up to 195cm
Frame & Handle
9 months to adults
Frame & Handle
Yes - M to XL Only
Mini: 32cm Small: 38cm-46cm Medium: 53cm-66cm Large: 71cm-97cm XL: 80cm-105cm
Mini: 52cm Small: 57cm Medium: 66cm Large: 70cm XL: 81cm
Chest, Forearm, Hip
PME Group The TRAM is a transfer and mobility device designed for the safety, convenience and dignity of both the client and carer. The TRAM is designed to deliver 3 powerful functions in one compact unit – gait training, sit-stand transfers, and seated transfers.
Young adults to adults
Up to 160kg
Up to 193cm
Frame & Handle
WEBSITES OF FEATURED STANDERS Active Rehab
Special Needs Solutions
www.pmegroup.com.au www.r82.com.au www.specialneedssolutions.com.au www.sunrisemedical.com.au
Chest, Forearm, Hip
Available in 2019 Introducing the new walker by Leckey! MyWay is all about giving children maximum opportunities for interaction, exploration and participation in a supported, upright position. MyWay has a revolutionary harness support system, which: Helps the child maintain better trunk alignment in an optimal upright position Delivers the core stability required to support head control and limb movement
MyWayâ€™s open-frame design: Makes touching, feeling, participating and discovering easier Gives the child more opportunities for development and learning Allows therapists to get close to the child and work with their lower limbs whilst they are in MyWay.
Enables optimum stepping ability.
For more information please visit sunrisemedical.com.au
R82 Walking Taking you from the simple to the complex!
Tell: 02 8213 6666 www.R82.com.au
WALK ON WHEELS ! Our range of mobility walkers provide safe, postural support which is needed when little ones get moving! Walkers are ideal for children with varying abilities and special needs. Apart from improved social development and integration, supported walking can also help improve skeletal growth, increase bone density and improve cognition.
PH: 1300 131 884 www.facebook.com/pme4thosespecial2u
18/07/2018 11:24 am
We specialise in fun and functional equipment for special needs children across Australia.
• More than 150 products available for trial • A fully-qualified team passionate about helping children live, laugh and play • Our very own Product Consultant based in Townsville
07 5597 4321 | firstname.lastname@example.org
A perfect night’s sleep with the Jenx Dreama ...the ultimate sleep positioning system “Testing the Dreama™ with our child has given the whole family improved sleep and a more normal, active lifestyle than before…”
Contact Step Ahead Paediatrics to arrange a trial. Phone 1300 953 935 www.stepaheadpaediatrics.com.au
SWINGS & ROUNDABOUTS
r o o d t ou
y a pl GIANT INFLATABLE ROLL CHAMBER Active play – eat your heart out! Crawl, roll or stand upright, this will keep the fun moving….
RRP $495.00 www.yardgames.com.au
FREESTANDING SLIDE AND LADDER The developmental benefits of a slide are numerous. They promote balance, coordination, increased flexibility and encourage positive social skill development. This slide comes in a variety of colours and also features a water nozzle for those hot days.
RRP $360.00 www.specialneedsplayequipment.com.au
DANCING HOOPS SET OF 2 Practice rhythm dancing skills and personal expression with these vibrant coloured hoops, for ages 3+.
RRP $17.95 www.teaching.com.au
BUBBLE SEE SAW Add some extra bounce to your see saw. A cushioned landing, this apparatus will rotate 360 degrees and is UV-stabilised and weathertreated to withstand the harsh Australian climate.
CROSS TUNNEL One giant four-way tunnel for those obstacle course seekers! Play big or small with each tunnel attached to the centre piece with Velcro or used separately. Suitable for indoor or outdoor and folds flat for storage!
RRP $199.00 www.hartsport.com.au
UP AND OVER PLAY CLIMBER Helping children to plan and organise their bodies to successfully reach the top of the wall and then climb over. This will enhance muscle development and grip strength. It is Australian made and combines a net rope and rock wall. 80kg weight limit.
RRP $595.00 www.specialneedsplayequipment.com.au
WOODEN TRIPOD STAND WITH CACOON The cacoon itself will tempt adults and children alike to chill out, but what a stylish way to hang your cacoon, with pressure treated timber! Remove yourself from the world and fly away in this organic shaped, blissful product. These are available in a range of colours and weight capacity.
RRP $685.00 (excl cacoon) www.cacoon.com.au
SLACKERS NINJALINE OUTDOOR OBSTACLE SET Does anyone have an extreme ninja warrior on their hands? Not for the faint hearted, this outdoor hanging obstacle course kit is versatile, skillful and easy to install or take down. Designed for children 5+ with adult supervision, it will test the true strength within. It might also make us parents shriek in fear!
RING TOSS CATALINA Ready, set, throw! Who will score the most points?
ORANGE MAT NEST SWING The largest sized nest swing available in Australia! Mainly used by kids but big enough to fit adults too. The textilene micro-weave material is waterproof, smooth and supportive. The powder-coated swing has a suggested weight limit of 140kg, hang the swing from one point for spin or two points for backward and forward.
RRP $349.95 www.heavenlyhammocks.com.au
Designed for a narrow or long backyard, it has two swing stations, is height adjustable and tough enough for both adults and big kids to use. You can even swap swings for a cargo net, boxing bags or jungle rope depending on the interest of the kids. Powder-coated in a colour of your choice, it is the perfect monkey bar and ultimate backyard playground for a growing family.
RRP $1690.00 www.funkymonkeybars.com
BALANCE BUG SET Roll the bugs on their back to practice balance and weight transfer or tip the bug over to step from one to the other. Used indoor or outdoor as a set of five.
RRP $319.00 www.hartsport.com.au
30+ Swings to choose from
Registered NDIS Provider
Play equipment designed for Children and Adults with Special needs to have the freedom to PLAY! OUR RANGE INCLUDES: ● Sensory swings ● Swing frames ● Outdoor play equipment ● Disable swings for children and adults ● Therapy sensory gym frames ● Wheelchair designed play equipment
(02) 9725 4961
Not all therapy is the same How do you choose the right supports for your child? NDIS Registere d provider
Everyday Independence has supported thousands of people to achieve their NDIS goals. Therapy has the best outcomes when it: > Comes to you, providing therapy where it has the biggest impact > Focuses on your child’s unique needs and goals > Provides evidence-based therapies that deliver results > Incorporates therapy into your family routines > Includes a therapy team working towards the same outcomes
We offer therapy for children and teenagers of all ages, including early childhood intervention. Call us today to discuss how we can help you achieve your goals on 1300 179 131 or visit www.everydayind.com.au
Supporting families throughout Victoria, Sydney, Newcastle and greater Sydney.’ Occupational Therapy, Speech Pathology and Physiotherapy
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Handy fire safety kitchen tips • Turn pot and pan handles inwards so they won’t be knocked over. • Install a fire extinguisher and fire blanket in the kitchen and know how to use them. • Ensure that all cooking appliances are turned off after use. • Don’t leave your cooking unattended. • Don’t keep your tea towels, oven mitts and other flammable items near the stove or cook-top. • Don’t use water to put out fat and oil fires. Water can cause the fire to spread rapidly and cause horrific burns. • Don’t carry pans of hot or burning oil through the house.
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COOPER'S TRAVELS Cooper Smith is 13 years old and a keen traveller and foodie. Cooper uses a manual wheelchair while he travels as he has dystonic quadriplegia cerebral palsy. You can see more of Cooper’s adventures on Instagram @thewheelfoodie
Aloha! Hawaii is such a great place to go as a family! The sun is always shining, the water is crystal clear and using my wheelchair was really easy to get around. I spent lots of time swimming, body surfing through the waves, trying new foods and even seeing wild turtles on the beach. I loved trying shaved iced on the North Shore and poke bowls from food trucks. My favourite part of Hawaii was doing a big trek up the middle of a dormant volcano crater. Diamond Head is only wheelchair accessible for a small section then I challenged myself to walk the rest of the way with dad’s help. I was so proud that I did it and was exhausted afterwards!
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BY JULIE JONES
Accessible AS A FAMILY WE LOVE SPENDING TIME TOGETHER AND WE’RE ALWAYS ON THE LOOKOUT FOR ACCESSIBLE EXPERIENCES WE CAN ALL ENJOY. Shared activities are a wonderful way of bonding siblings and ensuring life isn’t totally consumed by doctor’s appointments and therapy. With the school holidays just around the corner, and summer on the way, we thought we’d share a few of the activities that have worked for our family.
family fun working their way around often stop to swap ideas on how to crack the maze, which Braeden enjoys. When it comes to researching the accessibility of a maze, it’s important to ask the width clearance and type of ground cover (gravel is not a wheelchair user’s friend).
Our adventure-seeker loves a buggy tour. Riding shotgun, Braeden is always happy to explore an area on a buggy tour. Sometimes we’ll have a girls versus boys buggy experience which always brings out the family’s competitive side. On other occasions the four of us will all hop in one for a companionable laid-back tour. It’s a great way for Braeden to see different countryside with little effort. Once he transfers into the buggy he sits back and relaxes. We’ve explored country trails and beaches with the help of a buggy.
MINI GOLF ICE SKATING
After watching his sister go to ice skating lessons for years, Braeden was thrilled to be able to join her on the ice. We’ve found many local rinks, and most of the pop-up outdoor rinks, allow wheelchairs on the rink. Braeden finds skating in his wheelchair social and he loves joining in with the limbo and other games which are often offered.
Working together to find our way through a maze certainly creates many family memories. There’s always a mixture of emotions with frustration and joy as we find our way, occasionally hitting dead ends but eventually being victorious. Other families
This makes holidaying more inclusive for the whole family.
Due to the nature of the game, it can be difficult to find an accessible mini-golf course but it’s a favourite with our family. We’ve had fun at an indoor mini-golf course and tried our hand at aqua golf. Braeden stayed in his wheelchair for both and needed hand-onhand assistance, but it was fabulous family fun.
Accessible playgrounds are popping up around the country and it’s a wonderful meeting place when catching up with friends and family. Accessible carousels, swings and musical instruments make going to the park inclusive for all.
Many Surf Lifesaving Clubs around Australia provide a variety of beach wheelchairs making family days at the beach possible.
Australians love the great outdoors, but it isn’t always easy to be immersed in nature when you are a wheelchair user. The TrailRider is making our beautiful National Parks more accessible. Free to loan from many locations it’s fun to explore the bush as a family.
If you have an animal lover in your family, then there’s plenty of choices of animal encounters. From feeding a giraffe, wrangling a snake or cuddling a wallaby, animal parks and zoos offer a range of accessible experiences. Communicate with the keeper your needs and what will make your child comfortable and they are usually happy to accommodate. If you’re trying something new, we recommend phoning in advance and researching accessibility to avoid disappointment. Sharing activities bond families but they also offer children with special needs the opportunity to widen their life’s experiences. Sharing their photos with teachers and support staff opens up greater understanding of their personality and is a great way of engaging their peers.
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BY MARGA GREY, MSc OT
MELTDOWNS IDENTIFYING YOUR CHILD’S THRESHOLDS, TRIGGERS AND STRATEGIES TO COPE WHAT CAUSES MELTDOWNS? There are so many reasons a child could have a meltdown. In my area of work, I most often see meltdowns associated with Sensory Processing Disorder (SPD). For children with this condition, the brain has trouble receiving and processing information from the senses. It leaves many children with anxiety and poor social skills for coping with school and everyday life. Even if your child is not diagnosed with SPD, a large percentage of routine meltdowns stem from a stimulation overload. Additionally, for children with ADHD, ADD, autism, dyspraxia, or motor coordination problems, sensory processing issues often overlap with their other challenges. This is why understanding how sensory processing works and how any amount of sensory overload can cause meltdowns is critical for parents to understand how to cope and adapt.
WHAT IS SENSORY PROCESSING AND SPD? If you imagine more than just the five senses, and instead imagine all of the sensations from the environment and our own body that we perceive. This includes: • Sight • Hearing • Taste • Smell • Touch • Movement • Body positions • Internal body process awareness Here’s an example to illustrate the difference between a person without SPD and a person with. If your hearing informs you that a scene on TV is too loud, then you can easily get up and turn the volume down. Or perhaps the sun is too bright, making it hard to see or to pay attention to what someone is saying because you’re distracted. So, you put on sunglasses and resume normal conversation. There are many forms of SPD, and each one can affect someone differently. In the above examples, one person with SPD may have an overwhelmed reaction from something much quieter or less obvious as the noisy TV. Another person with SPD may squint and cover her eyes from the bright sun, but not recognise the cause or how to regain
stability. She may not be able to carry on the conversation or even keep walking – she is seemingly shut down, standing in the middle of the sidewalk squeezing her head with her hands. With children, they often can’t recognise, explain or know how to cope with the overwhelmed sensory processing system. This is why an outburst of behaviour – the meltdown – occurs.
MELTDOWN VS TANTRUM It’s important to understand that a meltdown is not another word for a tantrum. A tantrum is an anger reaction to not getting what one wants. Tantrums are common in all children and often resolve within a few minutes once the parent establishes clear expectations. Professionals in paediatric behaviour explain a meltdown as an overload of sensations. Despair and total inability to cope are characteristic. Usually the ‘fight or flight’ instinct kicks in, and it can take a long time for a child to be able to resume his activity. Even then, they might be affected for the whole day.
SENSORY THRESHOLDS A meltdown typically occurs when a situation puts someone past their regulatory sensory threshold. We all have sensory thresholds – both high
and low. Existing somewhere in the middle is optimal for self-regulation and normal daily functioning, and our typical sensory thresholds fluctuate during the day. If you’re tired, your thresholds might be lower, and you might be irritated easily by noise. If you’re rested and happy, you might enjoy a bit more noise in a social setting. Someone with SPD has thresholds that are higher and lower than typical (for that culture). A child with a very high threshold might have poor attentions spans, exhibit sensory-seeking behaviours, and limited body awareness. Conversely, someone whose thresholds are very low might be overly-sensitive, easily overwhelmed, and anxious.
SENSORY THRESHOLDS High Threshold
Optimal thresholds for self regulation and functioning
STRATEGIES FOR PARENTS
Here are the techniques I offer parents to cope with their child’s meltdowns. 1. OBSERVE AND BE SENSITIVE TO YOUR CHILD’S SENSORY THRESHOLDS. Here are some common meltdown triggers to look out for: • Bright lights/the sun, as evidenced by covering eyes, whining and looking at the ground when walking outside, squinting, looking at the ground and having a hard time sitting still in brightly-lit rooms. • Loud noises, like traffic sounds, airplanes, construction etc. These are evidenced by covering ears, screaming or crying, shaking, being fearful, hiding behind parents or clutching to their legs. • Getting dressed/undressed, due to the discomfort or even painful sensation of putting on and taking off clothes. Children will often resist, get angry, cry, lie down and scream and kick or hit to avoid being dressed. • Crowds, due to the frequency of being touched and bumped by other people. Some children with SPD absolutely hate to be touched, while others are overly-grabby or rough when touching other people.
of seemingly nowhere, it’s very likely that you’re dealing with a pattern of escalation of sensory overload. Pay attention to what activities were going on in your child’s life for the few hours leading up his next meltdown. Keeping a journal is a great way to help you notice trends.
• Dining, due to being picky about which textures and temperatures they can eat. If your child regularly refuses certain categories of foods (crunchy, cold, hot, wet, squishy) then these could be triggers for a meltdown.
3. KNOW WHAT BEHAVIOUR TO EXPECT IN YOUR CHILD WHEN HIS SENSORY THRESHOLD HAS BEEN CROSSED.
2. UNDERSTAND HOW YOUR CHILD REACTS TO APPROACHING HIS SENSORY THRESHOLD. Observe your child to read the cues that indicate that he’s approaching a sensory threshold. Sometimes a meltdown can be triggered by an obvious event, which you can easily recognise (construction noise for example). But what about when it seems like there was no trigger at all? Sometimes, being overwhelmed by choice can trigger a child to shut down. School shopping is a prime example. You’ve asked your child to pick one of several options, over and over from the school supply list. Which backpack: Wolverine or Spiderman? Which colour pencil box? Which lunchbox? Now your son is tugging at his ears, staring at the ground, and is unresponsive to your queries. You may have not noticed that he was approaching sensory overwhelm. Or, it could be that your child has a build-up of small triggers throughout the day and then explodes at seemingly nothing. This often happens to children after school. They use up all their energy maintaining calm through the small triggers at school, but when they reach the safety of home, they can't hold themselves together anymore and ‘go to pieces’. If you feel like your child has meltdowns out
What does a full-blown meltdown look like in your child? Does he lie on the ground, screaming and fighting? Does she cry with wide eyes as if in terror, shaking, and sobbing while clinging to you? Or is it more of a ‘shut down’, in which your child stops talking, covers his ears or eyes, finds a dark corner to hide in, or tucks his knees to his chest and rocks? Knowing how your child acts during a meltdown can help you know the right action to take to resolve it.
4. IDENTIFY WHAT WORKS BEST FOR RELIEVING YOUR CHILD FROM A MELTDOWN. Try out different soothing strategies to see what works best for unwinding your child’s meltdown. Be sure to write them down and give copies to his teachers and other care providers. Here are some strategies to try: •R emove your child to a quiet, safe area. This is not a disciplinary ‘time out’ and you should not leave a child alone who is having a meltdown. This is simply to remove the stimulations that are upsetting your child and to help them feel safe and secure until their body and sensory integration can rebalance.
• Hold your child tightly against you and rock slowly. • Breathe deeply and slowly while looking into your child’s eyes so she can synchronise her breaths with yours. We also use the How Do You Feel chart (above) to help kids to identify how they feel and recognise when a meltdown is building up.
5. A SENSORY DIET A sensory diet is simply a plan that parents use to ensure that their child receives the sensory-rich activities he seeks at regular intervals throughout the day. For a child who needs more sensory input, a typical sensory diet would include regular periods of play and movement in an area with high levels of sensory stimulation. He can have 4-5 ‘movement breaks’ in which he can do jumps on the spot, fitness exercises, enjoy a chewy or crunchy snack, carry heavy objects around, or utilise a fidget toy. For a child with low thresholds who is easily overwhelmed, their sensory diet would include periods of time where she can escape to an environment with very low stimulation. 4-6 times per day, she goes to a quiet, low-lit room where you give a deeppressure massage with soft music and slow, rhythmic movements for 5 minutes. I hope that by taking the time to understand some background context for why some children get overwhelmed by certain situations, more parents will be able to set their child up for success in their daily routine. By understanding sensory thresholds and triggers, we can be prepared to diffuse a meltdown before it begins. Marga Grey (MSc OT) is a pediatric occupational therapist with a keen interest in children and their families. She is CEO in charge of program developing at CoordiKids www.CoordiKids.com Marga provides therapy at Tyack Health, a multi-disciplinary private practice in Brisbane.
BY RACHEL WILLIAMS
syndrome rahman FROM THE MOMENT XAVIER KITCHIN WAS BORN HE HAS STRUGGLED WITH COMPLEX HEALTH ISSUES. But it’s taken seven years for his family to finally be given a diagnosis to fully understand why their little boy, affectionately nicknamed Bandicoot, has been affected. Recently diagnosed with HIST1H1E/ Rahman syndrome, the seven year old from Scottsdale in Tasmania is understood to be only the seventh person in the world, and first in Australia to be diagnosed with the rare genetic disorder. His mother, Rebecca, and father, Jeffrey, say that aside from concerns about the possibility of an enlarged kidney and his expected size at birth – given his older sister Nakita, 11 and brother Darcy, 9, were big babies at 8lbs 4oz and 9lb 5oz respectively – there was no significant indication Xavier would face a lifetime of difficulty. “Within a few minutes of Xavier being born he turned a navy blue colour, he was administered oxygen and we believed everything would be ok,” Rebecca recalls. He was soon in a critical condition with breathing difficulties and after treatment for pneumonia failed, he was airlifted to Hobart for specialist care with testing involving a skeletal survey and brain MRI. Tests confirmed a dead spot in the movement/coordination area of the brain, heart defects and excess fluid in his left kidney. He was sent to Melbourne as the quest to discover why he had breathing difficulties continued. While there, he was seen by genetic specialists who noted that he had dysmorphic features including a prominent occiput, bitemporal narrowing,
hypertelorisim, broad nasal bridge, upturned nose, micrognathia and macrocephaly. No formal diagnosis could be made and Xavier spent the first two months of his life between hospitals before going home on home oxygen on June 30, 2011. To date he still requires oxygen at night while being monitored by a pulse oximeter. The Kitchins describe the journey as a “whirlwind rollercoaster ride” of surgeries and specialist appointments for his intellectual and physical disabilities that continue to this day. Xavier has been reviewed by geneticists three times since birth but it wasn’t until November 2017 that a diagnosis was determined following trio sequencing. “I Googled after getting the report but there was just no information on this gene defect nor could I find a syndrome associated with it,” Jeffrey says. “This gene was only first discovered in 2014 and there were only five cases reported worldwide. After a few months passed Rebecca took to the Internet again and through searching Facebook found another family in Santa Barbara, California, who had a daughter of similar age who looked identical to Xavier. Through social media they have been able to connect with this family and build a network of support with new cases and patients coming forward.
HIST1H1E/ Rahman syndrome Rahman syndrome is a genetic syndrome that includes mild to severe intellectual disability and an increase in height, weight, or head size (overgrowth). The overgrowth is more apparent in infancy and may lessen with time. Other symptoms may include curved fingers, eyes that may not line up in the same direction (strabismus), and facial features such as full cheeks and an increase in the distance between the eyes. The syndrome is caused by changes (mutations) in the HIST1H1E gene.
“Xavier is number seven in the world to our knowledge with this syndrome and gene defect and the only case we know of in Australia. The doctors who found this gene are waiting patiently for more cases to present so that further information and
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collaborating can take place to build a profile of this syndrome.” The family says it’s a relief to finally be given a diagnosis for little Bandicoot, who loves the Wiggles, Giggle and Hoot and Justine Clarke. “The most challenging and frustrating thing that we have endured over the past seven years would be not having a diagnosis and not ticking boxes or meeting criteria when it’s come to funding or support,” reveals Rebecca. “We have had to fundraise and rely on our community for support to help fundraise to buy important and essential equipment that Xavier has needed. This has been extremely hard up until recently when we stumbled upon the Steve Waugh Foundation who have been a godsend for Xavier and us as a family helping fund equipment that Xavier has needed to grow his independence and help him engage in family activities we would otherwise not do.” Xavier is literally making small steps every day with the help of a support school. He wears AFOs and is able to walk independently on flat surfaces but uses a wheel chair for long distances, is challenged visually and uses sign language and speech devices to communicate. But, it is unclear what his future may hold. “We hope that with time and much patience we may get a better understanding of what might be our future with Xav, but we just take each day as it comes and don’t plan too much into the future,” says Jeffrey. “The unknown is a scary thing for us, the not knowing. We hope that medically he will be stable and that he will be with us for a long time to come.” And, if you’re wondering about the genesis of his moniker – it was bestowed on him by his grandfather after Xavier started taking food off the bench and like the marsupial, would always make his way into the veggie patch. Just as a bandicoot does in the wild, the Kitchins plan to dig in for the long haul and give their child the best future possible and are rewarded by the joy their son brings to others. “Xavier has an infectious smile that could brighten up the darkest of days. He has defied the odds and continues to make some awesome gains, all in Xavier time.”
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