Who can attend PlayConnect+ Playgroups?

PlayConnect+ playgroups are open to children between 0 –8 years old, with a disability, including those displaying ASD-type behaviours or where parents have developmental concerns. “PlayConnect+ draws on learning and experiences gathered through the PlayConnect Playgroups model for autistic children (0-5 years), children with autistic-like characteristics, developmental delays or behavioural concerns. These playgroups were delivered across Australia from 2009-2022.”

No formal diagnosis or NDIS plan is necessary in order for participants to attend the playgroup.

PlayConnect+ Playgroup Activities

PlayConnect+ playgroups have a variety of activities on offer to help entertain, engage and support visiting families. These include face-to-face weekly playgroup sessions (in term), online sessions and special holiday sessions. Activities might include:

• Music therapy
• Creative arts
• Sensory play
• Singing, music and movement
• Storytime
• Imaginative play
• Indoor and outdoor activities

What are the benefits of attending PlayConnect+ Playgroups?

The benefits of attending a PlayConnect playgroup are multi-faceted, benefiting both the child and their siblings and carers. Sessions are free to participate in and are supported by trained facilitators, which enables a fun and safe place for children and families to play, connect and grow.

PlayConnect+ Playgroups at a Glance

• Face-to-face and online offerings
• For children (0-8 yrs) with ASD/ASD-type behaviours
• Sessions are FREE to attend
• Groups supported by a trained facilitator
• Activities may include art and craft, story time, sensory play, music and movement.

Contact Details

For further information and to find out where your nearest PlayConnect Playgroup is, contact PlayConnect Playgroups on:

Phone: 1800 790 335

Website: https://www.playconnectplus.com.au/

Fenced Playgrounds in Brisbane

If you are just looking for the most awesome in this list then you might like our 7 most amazing fenced playgrounds in Brisbane list 

Fenced Playgrounds in North Brisbane

Milton Train Park

Ascot Park, Ascot

Oriel Park, Ascot

TC Beirne Park, Hendra

Gregory Park Milton

Milton Park Playground, Milton

Lockrose Street Park, Mitchelton

Lorikeet Park Mt Ommaney

Neal Macrossan Park, Paddington

Einbunpin Lagoon Parklands, Sandgate

Keong Park and Turner Playground, Stafford

Victoria Park Bistro playground

Fenced Playgrounds in the Moreton Bay Region

Leslie Patrick Park

Albany Creek Library Playground

Leslie Patrick Park, Arana Hills

CREEC, Burpengary

Pelican Park, Clontarf

Kumbartcho Playground, Eatons Hill

Walmsley Park, Narangba

Spinnaker Park, Newport

Westfield North Lakes Playground, North Lakes

Scarborough Beach Park, Scarborough

Pine Rivers Park, Strathpine

Suttons Beach Park, Suttons Beach

Sarbi Park, Warner

Lions Park, Woorim

Fenced Playgrounds in South Brisbane

Svoboda Park.

Whites Hill Reserve, Camp Hill

Hawthorne Park, Hawthorne

Svoboda Park, Kuraby

Arnwood Place, Tarragindi

Middle Park Boronia Heights

Fenced playgrounds in Redlands

Thornlands Community Park

Thornlands Community Park, Thornlands

WH Yeo Park

Fenced Playgrounds in Logan

Logan Gardens

Logan Gardens, Logan Central

Fenced Playgrounds in Ipswich

Grande Park

Honour Park, East Ipswich

Limestone Park, Ipswich

Whites Hill Reserve Ipswich

Grande Park, Springfield

Discovery Park, Springfield Lakes

Fenced Playgrounds Further Afield

Hinterland Adventure Playground

Kurrawa All-Abilities Playground, Broadbeach

Hinterland Adventure Playground, Cooroy

Grahame Stewart Park, Currimundi

Pioneer Park, Landsborough

Map of fenced playgrounds in Brisbane

Considerations when using fenced playgrounds in Brisbane

Just because the kids are playing in a fenced playground doesn’t mean you can ignore them and assume they are free from harm. As always, children should be supervised when using playgrounds, and fenced playgrounds are no exception.

• Check there are no holes or broken sections of fencing.
• Make sure the gates are shut at all times,
• Don’t let other children in or out of a fenced playground without their parent’s/carers’ permission.
• Regularly check the whereabouts of your child/ren within the playground.

Who benefits from fenced playgrounds in Brisbane?

• All parents and carers – that’s right- we think every parent and carer of young children would benefit from Fenced Playgrounds in Brisbane simply because of the safety factor.
• Parents and carers of kids with special needs, especially those with ASD and ADHD where verbal direction is ineffective in creating boundaries.
• Parents and carers of multiple children. Let’s face it, how can one parent chase two kids in the opposite direction?
• Parents and carers with kids of similar ages- same reason as above.
• Parents and carers with babies and kids because leaving a baby alone to chase a toddler is a safety risk.
• Pregnant mums with kids, because running while pregnant is a safety issue.
• Parents and carers with mobility challenges may be unable to run after their kids.

We will continue to voice our need for more fenced playgrounds in Brisbane. If you feel the same way, we suggest you have a chat to your local member of parliament.

Dyslexia means ‘difficulty with words’. Dyslexia is a learning difficulty that affects a child’s ability to develop a strong understanding of language. Children with dyslexia struggle learning to read, write and spell. Your child may also have difficulties with oral communication, organisational skills, following instructions, and telling the time.

Dyslexia is caused by a difference in the way the brain processes information and for this reason, children with dyslexia learn differently. Dyslexia is far more prevalent than realised and dyslexia may affect one out of five children in the classroom setting (up to 20% of children). Dyslexia is not representative of intelligence but rather of the way in which someone learns and processes information.

Dyslexia is associated with many strengths and talents. Your child could be highly imaginative, very creative, be a good problem solver and have an inquiring mind. Your child may excel in areas such as art, design, music, drama, sport, science or technology.

A video that explains Dyslexia to children (made by a child)

Brisbane Dyslexia Support Groups

There are a number of Brisbane Dyslexic groups in Brisbane providing support, education and information sharing to families. Details of these groups can be found at http://www.facebook.com/groups/brisbanedyslexics. For details of information nights, dyslexic play dates etc in and around the Corinda area, please contact Carlie Rice at carlie.rice@optusnet.com.au or 0408 507 616.

SPELD Qld is also great source of information for dyslexics in Brisbane. You can join the Facebook Group here

The Gold Coast Dyslexia Support Group

The Gold Coast Dyslexia Support Group is pro-active parents and teachers who are advocates for children with dyslexia. We have members throughout south-east Queensland  and membership to our group is free.

The focus of our Support Group is to increase awareness, share information and provide support to parents, teachers and students on issues involving dyslexia.

If you require more information on dyslexia, please email Tanya at gcdyslexia@gmail.com or find us on Facebook:

http://www.facebook.com/groups/gcdyslexia/

The Australian Dyslexia Association

The Australian Dyslexia Association is a not for profit organisation concerned with the identification and treatment of dyslexia and related language-based difficulties. The ADA offers assessment services and educational treatment as well as training, information and support for teachers and parents. www.dyslexiaassociation.org.au

The Dyslexia Association

The Dyslexia Association is a registered, non-profit organisation. The Founding Members of The Dyslexia Association are dyslexic people, parents with dyslexic children and experienced professionals who work successfully with dyslexic clients. We respect that other organizations share a passion for dyslexia and are committed to their cause. We ask that the same respect be shown to The Dyslexia Association for our passion for dyslexia, commitment to promoting a positive awareness and the right to seek alternatives. www.dyslexia.org.au

Helping Children with Dyslexia

Helping Children with Dyslexia is a website for parents of children with dyslexia. It is free to become a member and you can access free learning aids and teaching resources, recommended books for children to read, recommended websites, research reports and news articles and newsletters.

Liz Dunoon is a parent, teacher, author and dyslexia advocate. Her book, Helping Children with Dyslexia provides strategies to ensure your child’s success at school and gives parents an instant action plan to follow. www.helpingchildrenwithdyslexia.com

Successful People with Dyslexia

Helping children to appreciate that dyslexia is not a roadblock can be made easier by showing them examples of people who have dyslexia and who have achieved greatness. If you google dyslexia and examples of success the list is long and empowering. The stories also reflect many misunderstandings during childhood and show the absolute benefit of not only being aware of dyslexia but advocating for support to ensure the potential of a child is fully realised.

• Steven Spielberg didn’t find out until he was 60. Here is a 10-minute video with him explaining how he has dealt with Dyslexia over his lifetime

• Jamie Oliver didn’t finish his first book until aged 38
• Richard Branson who to his credit has become quite the role model for young ones looking to aspire to greatness

Brisbane Kids is all about supporting the community of Brisbane and we welcome your input. If you have an area of special needs that you would like to contribute to, that could benefit kids in Brisbane then let us know by emailing us at info@brisbanekids.com.au

What you will find on this website related to Autism

• An ASD playgroup run by Aspergers Services Australia
• Therapists that can help with ASD
• A mobile hairdresser who has cut many kids hair who have autism
• Movie Days especially for kids on the spectrum
• Autism Behavioural Support Queensland for Applied Behavioural Analysis support, as well as providing an awesome toy and book resource library.
• Brisbane Support Groups for Autism Because autism is a challenge best met with friends and supporters.
• AEIOU Foundation: Creating a lifetime of opportunities for children with autism AEIOU Foundation provides leading early intervention and care to children with autism aged 2 – 6 years.
• The Lowrie Family | An AEIOU Foundation Family Case Study For retired NRL premiership winner Todd Lowrie and wife Sally, their son’s first day of school was a day they had originally envisaged very differently, had it not been for AEIOU Foundation.

Why you want to learn more about Autism Support in Brisbane

1. You suspect your child might be on the spectrum
2. You have just received a diagnosis
3. You have a diagnosis and are seeking more information and more support.
4. You are already well on the road, even several years in and just want to revisit the plan

What to do and where to go if you think your Brisbane Kid has ASD

1. Visit your GP and get a referral to a paediatrician.
2. Keep a diary so that when you present to your GP you will have some consistent patterned information to give them
3. A paediatrician, psychiatrist, psychologist or another trained professional in ASD can diagnose a child with ASD.
4. If you aren’t happy then get a second diagnosis

So your child has been diagnosed with ASD- What next?

1. Get in touch with Autism Queensland
2. Check out all the different Therapies related to Autism available to you. This will include speech therapists, occupational therapists and psychologists.
3. Playgroups for kids with Aspergers in Brisbane
4. Have a look at the different early intervention programs available through organisations like AEIOU and others you can find via Autism Queensland.
5. Explore your funding options and registration with the NDIS – find out what you can and can’t claim for. Be clear about that and really maximise these funds.
6. Notify your child’s daycare or school and find out what support they can offer
7. Find specialised Autism Medical Professionals. If you go through Autism Queensland you may be able to access one under the FACSIA system which means that if you are receiving funding you will  not have an out-of-pocket expense
8. For general information, you can call the 24 Autism Hotline

The Miracolt – a horse simulator – gives people who cannot participate in therapy with real horses (due to safety concerns or physical ability) a safe and “true to life” alternative. It has all the benefits of equine therapy but in a controlled environment. It can help with everything from postural control, balance, coordination and endurance, to range of motion, attention and strength.  

The Miracolt Horse Simulator

Developed by Dr Brian Garner and Chariot Innovations, the Miracolt draws on the same principles used in Hippotherapy – a relatively unique therapy tool which utilises the movement of a horse. The Miracolt also mirrors equine movement to engage sensory, neuromotor and cognitive systems to promote functional outcomes.   
  
Help Enterprises’ equine therapy facility at McIntyre Centre in Pinjarra Hills is the first in Australia to acquire the innovative tool. 

Physiotherapist Sally O’Brien, who has been using the Miracolt with her clients at McIntyre Centre, has seen some encouraging results.  
 
Since introducing the new tool into her therapy sessions with 8-year-old Daniel, Sally said “I’ve observed positive changes not only in his physical range of motion and tone regulation, but also in his state of alertness and social engagement.”

Daniel’s mother, Wiji Chapman, has also seen remarkable improvements since Daniel started using the Miracolt. “Now he has the ability to assist me when I help him to stand up and manoeuver in and out of his seat. His muscles aren’t as tense and he’s more relaxed. It’s made a really positive impact,” she said. 

 “Daniel loves working with Sally, and the movements of the Miracolt. He’s as excited about using the Miracolt as he is when he rides the horses,” said Wiji. 

 Much like Daniel, McIntyre Centre regular Darcy has also benefitted from using the Miracolt. Darcy has reduced function of both of his legs and his left arm and mobilises in an electric wheelchair. At 8 years old Darcy started equine therapy using real horse but transitioned to using the Miracolt for a safer riding experience. 

As a child horse riding lessons quickly proved very effective for Darcy. At the start of each lesson, the increased tone in his adductor and hamstring muscles meant that he would sit precariously with his legs up above the saddle flaps.  However, within minutes of the horse walking underneath him, the tone in Darcy’s legs would relax and he would start to lower down into the saddle and find a much more stable position with his feet in the stirrups.   

As the years progressed, several factors meant Darcy could no longer continue therapy on a live horse and the horse-riding lessons came to an end. When the Miracolt was acquired by the Centre in 2021, Sally and Darcy recommenced equine therapy – this time on his new mechanical mount. 

Sally said she has observed positive results “similar to the remarkable effects that I had seen with Darcy on a horse.”

Darcy, who is now a young adult, noted that “the Miracolt is … probably the closest thing you’ll ever get to being on a horse, without actually having to get on one.

I notice after every session, as does Sally, that my legs grow an extra 2cm due to the horse-like swaying of the Miracolt. My legs become a lot looser and have got a better range of motion and flexibility. Instead of behaving like one, my legs are individualized for the next few hours,” said Darcy.

Equine Therapy

The McIntyre Centre has been providing equine-assisted activities and therapies to support people with disability for over 50 years, and the Miracolt is has given them unlimited opportunities in this direction.  They use the special horse-human relationship to help people reach their goals, develop new skills, and achieve personal growth.
Watch this short video to see Sally explain the Miracolt and its benefits.  

To learn more about McIntyre Centre and the Miracolt, visit https://bit.ly/3ti4YwZ
 
Help Enterprises is a registered charity and not-for-profit organisation that enhances the lifestyle and independence of people with disability. 

Introducing the Kaboose App

Their solution is a social app that allows children with Autism, initially aged 13-18, to find and interact with friends safely. On signup, they verify identity and obtain parental/guardian consent.

 Their members will create a profile, nominating special interests, age and location which allows us to match people based on the criteria set. People using the app will be able to ask friends to connect and from there create various tribes related to their special interests.  For example, mountain biking, gaming, coding.

 From there you can start chatting with their friends or within the tribe.

Protection against Cyberbulling

To prevent cyberbullying, they will be integrating with an AI tool that helps them moderate the chats.  They will also have Community Managers monitoring communications within the app. [This is still in development]. 

• Other features include in-app chat tips for kids who need additional support. 
• In app communication tips and social skills ‘sound bites’ to allow us to build capability in our kids from an early age.
• An ability to find a ‘study buddy’ outside the school system.
• An ability to find a Career coach as young people approach the age where they are looking to secure employment.
• An ability to find a Life Mentor as various challenges arise throughout the teenage years, particularly at vulnerable times.
• Parents have also told us they’d like to be able to find other parents who are at the same age and stage as their child.
• Through our user feedback we have identified other users with different disabilities who would be interested in the solution.
• An ability to scale to other ages, both younger and older.  Our user feedback has suggested kids younger than 13 would be interested in joining, as have adults.
• We will also look to gamify parts of the app in future releases, like the snap chat score.

Through their technology and in app tips, we’re working to create the safest possible online space for our most vulnerable children and young people.

Available on:

Read more about them on their Website

What is Animal-Assisted Therapy?

Animal-assisted therapy (AAT) is a complementary form of therapy which uses animals as a form of treatment. This sort of therapy is particularly popular when working with children, especially those who love animals.

Animal-assisted therapy can be used to help those with Autism, behavioural issues, mental health illnesses as well as a variety of other medical conditions.

How Does Animal-Assisted Therapy Work?

Each practice will have their own unique way of integrating animal-assisted therapy into sessions depending on the client and therapy goals.  Some common activities with the animals may include:

• Communicating feelings and thoughts
• Grooming
• Writing stories or creating artwork incorporating the animal
• Assisting with animal training and obedience
• General interaction between animal and child

What Animals Are Used?

One of the most common forms of animal-assisted therapy is canine-assisted therapy, which uses dogs, and equine-assisted therapy, which utilises horses. Other less common animals used in animal-assisted therapy include cats, birds and even pigs!

How Can Animal-Assisted Therapy Help?

Engaging in animal-assisted therapy can have many positive outcomes for the child in question. Of course, as with any type of treatment and therapy, results will vary from person to person, but it has been reported that AAT can improve:

• social skills
• empathy
• communication skills
• self-esteem/confidence
• blood pressure
• pain management

Considerations When Selecting Animal-Assisted Therapy

When selecting any kind of healthcare for you or your child it is important to research the practitioner you plan on utilising, paying close attention to their qualifications,  practice and the skills they possess. When accessing AAT it is particularly important to investigate what specific animals are used and how they are used.

Where Can You Find Animal-Assisted Therapy in Brisbane?

Psychology and Animal Assisted Wellbeing (PAAW)

Based in Redcliffe, PAAW is a psychology practice which uses specially trained therapy dogs to provide AAT for children aged four years and older. Equine therapy is also available to some clients and is held at a property in Burpengary.

Website:         https://paaw.com.au/

W.A.G Therapy

This private psychology practice in Strathpine provides canine (dog) therapy in a relaxed environment. AAT facilitates comfortable and safe opportunities for therapy, with the practice specialising in anxiety disorders, parenting issues, trauma, mood disorders and school refusal, just to name a few.

Website:         https://www.wagtherapy.com.au/

Bluest Skies

Julie, from Bluest Skies, provides counselling and animal-assisted for children (from the age of five), adolescents, families and adults, from her Eight Mile Plains office. Julie’s therapy dog is available to work with children and adults, depending on their suitability.

Website:         https://bluestskiescounsel.wixsite.com/juliesblueskies

The Psych Professionals

With offices based in Loganholme and Capalaba, The Psych Professionals are a psychology private practice offering therapy dogs as part of their treatment plans for both children and adults.

Website:         https://psychprofessionals.com.au/ 

Equine Therapy

Equine therapy is animal-assisted therapy involving horses. Some local businesses offering such services include:

Equus Terra

“Each lesson, every interaction with the horse – is the road of discovery, the road to improvements in various areas for the kids and adults who otherwise have very limited opportunities to blossom, to open up in their emotions, to find new ways to adapt to the world around them.” They are based at Yeronga

Website: https://www.equusterra.com.au/ 

Brisbane Equine Assisted Therapy

Based in the Moreton Bay Region, Equine Assisted Therapy and Psychology services for individuals and groups. They support NDIS self and plan-managed participants along with private referrals, and also work closely with local schools and charity organisations. 

https://brisbaneequineassistedtherapy.net.au/

Horses in Mind

Based at Hemmant, Horses in Mind offer equine assisted learning as a tool for personal growth and development. 

Website: https://www.linkedin.com/company/horses-in-mind/about/

Other Animal Encounters

If you Brisbane Kid loves animals and would like to spend quality time patting and cuddling them, then why not head to one of the following places, where animal encounters are on offer.

• Collies and Co – Samford
• White Ridge Farm – Elimbah
• Trevena Glen Farm – Mt. Samson
• Lyell Deer Sanctuary – Mt. Samson
• Naughty Little Kids – Peak Crossing
• Haigslea EWE NIQUE Hobby Farm – Haigslea

For detailed reviews on the above places or to find more animal encounters in and around Brisbane click here

Brisbane City Football Club offers an inclusive football program called ‘Football For All’. The program is available to players of all ages & abilities and lays the foundation for the development of motor skills and social interaction. The program runs from 1:30-2:30pm every Saturday at Brisbane City FC’s training facility.

Brisbane City FC also has an affiliation with the Australian Catholic University and offers students studying Occupational & Physiotherapy the perfect environment to assist members of the community to become involved with a great family orientated Football Club and to be physically active. The program is a fantastic initiative to give players the opportunity to play football in a friendly environment. The coaches and support staff have a strong passion for the program, and making a difference to the community and the lives of those with of a different ability.

About the program

The Brisbane City FC ‘Football For All’ program is an Inclusive football program for players of all ages & abilities. The program is run by a qualified football coach . The Brisbane City FC ‘Football For All’ program allows players of all abilities to play football and focuses on the development of motor skills, social interaction and of course, fun!

Contact Brisbane City Football Club

For more info on the Football For All program, including enrolment, please visit https://www.brisbanecityfc.com.au/, phone 07 3356 8834, or footballforall@brisbanecityfc.com.au

Ironically rare diseases are actually common. Current figures suggest that more than 400,000 children and more than 1.5 million adults in Australia are affected by a rare disease. However, many families aren’t even aware that their loved one falls under the label of having a rare disease.

The challenge of a rare disease

Rare disease children are born with conditions where cures just do not exist. Sadly, rare diseases tend to be life limiting, with the majority of these conditions diagnosed soon after birth and with those affected for the most part not living beyond their childhood years. In recognition of this, families are often shelved by our hospitals and our government as the incurable and so the support given to them and their families is minimal. Families are often given no choice but to wait for their beloved children to die. The hardship and emotional turmoil that comes with this waiting game is incredibly difficult for rare disease families. Jack’s Butterflies exists to champion the needs of those who are currently ignored or undervalued by our government, charitable organisations and sponsorship avenues.

Jack’s Butterflies is here to support families

Set up by Rachel Gates as a result of the journey that she and her family have travelled since the birth of her son Jack, who was born with Ohtahara Syndrome in 2011. Ohtahara Syndrome is a severe form of epileptic encephalopathies that is onset within the first 3 months of life and is characterized by seizures (often hundreds of times a day), sadly eventually leading to death during childhood. Whilst Jack’s condition was the catalyst to Jack’s Butterflies being established as a charity, it is merely a snapshot of the huge number of conditions that exist under the banner of “rare disease”.

Jack’s story

This current chapter of the Gates family’s story began soon after their beautiful Jack was born. Rachel and her husband Paul were told to prepare for their son’s death as he was unlikely to survive his first weeks. They were eventually given permission to take their beloved boy home to wait for the inevitable, to spend time as a family, to say goodbye and to mourn for Jack and the dreams and hopes that they had built for him before he was born. These words took away their ability to just enjoy being parents to Jack and they stole so much potential joy from the Gates family. However, amazingly Jack’s strength and the love that surrounded him was stronger than the continually upgraded prognoses of his life expectancy. To this day Jack has miraculously continued to defy the dates given by his specialists and we all live in hope that his courage, strength and determination continue to challenge the medical expectations and keep him present in our lives for many, many years to come.

This personal experience became the catalyst to the idea of Jack’s Butterflies. The Gates family’s own suffering and difficulties inspired them to want to help others, to provide them with the resources, tools and support networks that they were so desperate for themselves. Sadly and unfairly the assistance and understanding given to many rare disease families is inadequate. Medical conditions that are seen to be familiar or more relevant are given more financial backing and more exposure, with those dealing with a rare disease given less consideration.

How Jack’s Butterflies plans to help

Jack’s Butterflies’ range of services and assistance looks to not just assist rare disease children and their families with everyday challenges, but also to equip them with the support to extend their lives beyond the daily isolation and confines of hospitals, social services and their own homes. Established in Brisbane earlier this year, Jack’s Butterflies will be rolled out to the rest of Australia over the next four years.

As a new charity working to assist “rare disease families” Jack’s Butterflies is actively introducing itself to the public and those who may be able to benefit from the range of services and support offered by them and currently not available elsewhere.

Jack’s Butterflies‘ initial rollout of programs will include running activity-based support groups geared towards overcoming social isolation, supplying essential need hospital stay packs to parents of children who are admitted through emergency and providing these parents with healthy and nutritious meals whilst their children are hospitalised. Jack’s Butterflies wants to help lighten the stresses that come with families living with a rare disease.

Meeting Rachel Gates for the first time you are instantly drawn to her passion for making a positive difference. Her own personal experience, understanding and empathy for those walking a similar road to her own family, both defines and drives her in her quest to both bring life to Jack’s Butterflies and make a joyful difference to as many lives as possible.  “Losing a child or learning to live knowing that you will lose your child will always bring profound sadness, depression, anxiety and stress. And whilst we can’t prevent the inevitable, we want to make the journey brighter and bearable. We want to provide our families with the tools they need to not just merely survive the journey but to thrive. So that when they look back, they have a plethora of memorable moments that are not just consumed by profound sadness and heartache.”

Jack’s Butterflies services include:

• Support groups – families, siblings, parents (Mums and Dads together and separately), carers/hospital staff/support workers affected by the death of a rare disease child.

• Hospital Care Packs – made available to parents whose children are admitted into the children’s hospital via Emergency who do not have time to grab the basics (such as toothbrush, toothpaste, razor, facecream, brush) to make hospital stays that little bit easier. Initially this will be provided to rare disease families, however, it is hoped that this will eventually be made available to all parents on the PICU wards.

• Hospital Meal Packs – made available to parents whose children are admitted into the children’s hospital via Emergency to provide them with strength and to reduce the financial burdens that often accompany such hospital visits (such as potential loss of income, childcare arrangements for other children, parking etc.). Initially this will be provided to rare disease families, however, it is hoped that this will eventually be made available to all parents on the PICU wards.

If you have a child living with a rare disease or you know of families that may be interested in reaching out to us and finding out how we can make a difference in their lives please get in touch. We’d love to hear from you and introduce you to Jack’s Butterflies and work to brighten your journey.

Written by Natasha Nobay

Further Details/Contact

Rachel Gates – Jack’s Butterflies

Mobile 07 3359 9004

Email – rachel.gates@jacksbutterflies.org.au

1. You are the expert

Even early in the game, you may have already heard the saying you are the expert in your child’s life. It is the standard line of so many workers in this industry and though it is well-meaning, what does it mean? It means its time to trust your gut, intuition, mummy gene, whatever you like to call it. Your child is yours and only yours, you are the one who knows them inside out, so you will know what your child ultimate needs from a service. If it doesn’t sit well with you, no matter what the services’ agenda may be, then it probably isn’t the right service for your child. Trust that feeling. Listen, take your time and then respond. If it a medical issue in the hospital then remember that you can always speak to a Nurse about Ryan’s Rule and demand a second opinion. Trust your gut and speak up!

2. Advocate, advocate, advocate

The truth of the matter is that services are resource poor. Now is always the best time to advocate for your child. Be prepared. What services does your child need? How much do you think they will really cost? Take notes in meetings, and take notes about your child to meetings and speak up. You deserve to be heard and so does your child.

3. The squeaky wheel does get the grease

The National Disability Insurance Agency, like all government departments, will say no before they say yes. This is a standard line. Know that if you keep advocating loudly, stating your case clearly and genuinely feel that what you are asking for is what your child needs then you will be heard. Be that parent who asks for it.

4. You have a CHOICE

New service providers are always developing, people have asked for choice and choice can only serve to provide more options for families. It is worth knowing that unlike the past there are more and more services available which mean more competition which means higher standards and the ball is in your court. There will always be another service that is willing to help you, you WILL find the right fit for your child.

5. Get help

This may be a whole new world for you, with new language, lots of jargon and service providers who you have never heard of. If you don’t understand what is being explained to you and, if you don’t know what to ask for, get help. Ask a trusted friend, a therapist or family member to you support you and guide you.

Help is available and with a clear understanding of what your child’s needs are you can make better choices for yourself and your child. That is the fundamental goal for every carer living within this daunting system.

This article was written by Carly Kelly-Fairweather who is a Brisbane Counsellor experienced and committed to supporting women and men in their transition to parenthood. https://www.carlykfcounselling.com.au