Category: Inclusion

Carer Burnout – February Musings

It is probably an opportune time to talk about the very real ongoing pressures that carers and families face every day.

There is a relentlessness of daily routines, therapies, school refusals, health practitioner refusals and ongoing meltdowns. Let’s face it, not many in the everyday community have any idea what a day looks like for many who care for anyone with complex needs. They might have empathy on the surface but that is where it ends. Often, we are also barraged by completing forms, forms for Centrelink, forms for NDIS and other government departments especially when your child is becoming a young adult – without the ability to make these decisions for themselves.

Then the ongoing s***show that is NDIS, whereby the community and media is constantly disparaging it for overspending, and then the resulting unjustified cuts to participants budgets leading many to bow out of the system altogether that was principally designed to help people with disability lead a more dignified and safer life. Somehow putting extreme pressure on parents to provide yet more reports from therapists or even worse, get a re-diagnosis because what was gold standard 5-10 years ago has been replaced and it no longer fits their tick box system.

Pressures on carers are at an all-time high and many have little to no supports outside of this system of NDIS providers as all previous groups and supports disappeared when NDIS took over.

For me personally, I have reached out to Carers SA which is based in Adelaide however I know that the Carer Gateway https://www.carergateway.gov.au/ can link you with services in your own cities https://www.carergateway.gov.au/about-us/local-service-provider. I now belong to a peer group, which is designed to support carers in a small group setting, a social group which is an outing with other carers, an opportunity to get out and about and there is also 1-1 counselling. The counselling only encompasses 6 sessions, but it might be a circuit breaker for some who need 1-1 support outside of a group setting. These services are free of charge which makes it a little different to the Medicare supported psychology sessions which can have a significant gap which many can’t afford. Carer supported groups and counselling can make the isolation and stress a little easier to bear, as you are surrounded by people who ‘get it’ and are non-judging of your circumstances.

Please reach out to the Carer Gateway if you think you could benefit, I know it helped me and it might help you too.

Social Stories

The Power of Social Stories

Social stories are a valuable tool for helping individuals living with Neurodiversity (Autism Spectrum Disorder ASD & Attention Deficit Hyperactivity Disorder ADHD navigate social situations. These personalised, narrative based tools explain social scenarios in simple, clear language, breaking down complex interactions into manageable steps. I have used them with great success for my son who has complex needs and is non-verbal. He responds very well to this approach as he likes visuals, particularly personalised photos for new experiences which are unfamiliar to him.

Why Social Stories Matter:

  1. Enhance Social Understanding: Social stories help individuals understand social norms, cues, and appropriate behaviours in various situations.
  2. Reduce Anxiety: They provide predictability and clarity, easing anxiety about new or unfamiliar events.
  3. Promote Independence: By offering guidance on how to handle different situations, social stories help individuals build life skills and manage social interactions with less support.
  4. Personalised Learning: Social stories can be tailored to fit the specific needs and challenges of the individual, making them highly adaptable.

How They’re Used:

  • In the Classroom: Teachers can use social stories to explain routines, expectations, and social interactions.
  • At Home: Parents can help children understand outings, everyday tasks and emotions.
  • In Therapy: Therapists use social stories to teach coping strategies and social communication skills.

By breaking down tricky or new social situations into clear, easy-to-follow steps, social stories help individuals feel more confident, reduce stress, and improve social engagement.

You can create a social story using any technology like Word or PowerPoint in the Microsoft Office Suite. There is also an app that you can use: https://apps.apple.com/us/app/social-story-creator-library/id588180598 I have found this app to be very easy to use and it’s easy to add your own photos and text to individualise the story.

Sunflower Lanyard

Some disabilities, conditions or chronic illnesses are not immediately obvious to others. For some people, this can make it hard to understand and believe that someone, with a “non-visible” condition genuinely needs support. Some people question whether you have a disability because you don’t look ‘like you have a disability”.

That is why they created the Hidden Disabilities Sunflower – to encourage inclusivity, acceptance and understanding.

It is a simple tool for you to share that you have a hidden disability voluntarily. Simply by wearing the Sunflower, you’re just letting everyone know that you might need extra help, understanding, or just more time.

It allows others to understand that the wearer may need a helping hand, understanding, or more time in shops, at work, on transport, or in public spaces. More places are becoming “sunflower friendly” including airports and larger shopping centres like Westfield.

It’s also recognised internationally.

To buy: https://hdsunflower.com/au/sunflower-lanyard-and-id-card-1.html

School Refusal

Should we force a child to go to school?

In short, no. Working together with your child and addressing the reasons they don’t want to go to school should be the priority. It is important that they feel safe and that their well-being is important to you.

It is recommended that a dialogue is opened with the child. Questions should be asked so you can get to the core reason that school refusal is taking place.

Possible questions:

  • If you could change one thing about your school, what would it be? 
  • Is there anyone bothering you at school?
  • How can I help you with school?
  • Are you worried about anything at school? 
  • How are your friendships at school going? 
  • Is anything worrying you in general?
  • Is there anything you wish your teachers knew?
  • Is there anything you wish I knew?

Strategies for dealing with school refusal:

  • Stay calm – This leaves space for your child to come to you in a calm way themselves.
  • Use positive language – For example, instead of ‘are you going to get up and go to school today?’ try ‘what shall we do after school today?’.
  • Debrief daily – Open the lines of communication for your chid to share what might be bothering them.

School refusal can be very complex:

  • Get professional guidance – starting with school staff. Speak to the class teacher, school counsellor, student services so you can work together as a team to help your child overcome their anxiety.
  • Speak to your doctor/paediatrician and get the support of a psychologist or counsellor who may also help to unlock why your child is not attending school and help address the problem of getting them back to school with their well-being in mind.

School Holiday Survival Guide

As the summer holidays approach, this time can be a cause of anxiety for children who are out of routine for 8 weeks as well as their parents and caregivers who may struggle to find things to do.

When you have the added stress of having a child with a disability, activities which other children and their families find fun could have the complete opposite affect due to extra crowd numbers and noise.

Every child is different, so finding the right activity is important. Here are some Adelaide (and surrounds) based activities to consider:

AT HOME

  • Arts and Craft – craft activities, painting, drawing, stickers, chalk
  • Water Play – buckets, cups, boats, balls, paintbrushes
  • Build a Castle – pillows, chairs, table, sheets
  • Create a Reading/Play Nook – move furniture, blankets, pillows, books
  • Sensory Play – shaving foam, play-doh, floof, slime, magnetic sand
  • Gross Motor Play – trampoline, fitball, musical instruments
  • Cooking

FREE COMMUNITY ACTIVITIES

PAID COMMUNITY ACTIVITIES

Helping Special Needs Parents

Caring for a child with special needs is challenging. It can also be thankless, relentless and make parents feel invisible within their friendship groups and families.

The best way to support carers is by making them feel like they are not alone in their struggles. Joining groups that are designed with carers in mind is a good option. I am a big advocate of Carers SA, soon to become the Carer Gateway in April 2020. However, not everyone wants to be a part of a group situation, preferring 1-1 support and familiar people only.

It is important to provide carers with choices about the type of support they need. It might be a peer support group, 1-1 counselling, carer outings or simply family and friend gatherings in supportive environments.

Providing a safe environment for the carer and the person they are caring for will be greatly appreciated and may work to ease the social isolation that many carers feel in their role. Planning inclusive events may require a little extra effort but asking questions of the carer about what would make it a more successful event for them, will go a long way in helping them feel enjoyment and a sense of belonging.

Here are some other practical ways you can help special needs parents.

Be Grateful For What You Have

A short video powerfully depicting the importance of being grateful and mindful for what you have in life.

A little thing you can do to practice gratefulness is to keep a journal and write a point or two each day about the things you were grateful for. It could be as simple as a chat with a friend that made you feel special, a goodnight kiss from your child or a delicious cup of coffee that you didn’t have to make yourself. You will be surprised at how many beautiful moments we overlook each day. Take the time to remember and cherish them. If you wrote 2 each day, there would be 730 happy memories to be grateful for and mindful of each year.

The 7 Drops

Working with children can be a challenge, especially if they are not keen to work with you in return. This list outlining ‘The 7 Drops’ is something all practitioners and educators can try to aid building connections and relationships with the children they work with.

Drop your voice – lower your pitch. Show interest in what the child is doing with your voice, your facial expressions and body language.

Drop your body – get down to their level. If they are on the floor playing, ask to join in on what they are doing. Initiate taking turns if they will accept it.

Drop what you are doing – take your time to get to know them. Leave note-taking and other work for later, make spending time with them your priority.

Drop your guard – let them take risks. Encourage them to try different things and get messy and creative while doing it.

Drop your defences – keep your agenda to yourself. This is about the child’s development. Building a real connection and relationship needs to come from an authentic place. Set goals with the child so you are working towards the same outcomes.

Drop your batteries – turn your devices to silent and give them your full attention. This creates less distraction for you and good role-modelling for them.

Drop your misconception that fun is frivolous – learning through play is powerful. Rediscover your inner child and follow their lead. Have fun!

Say Hello

Start teaching, ‘say hello’.

Taking a child with a disability out into the community is often accompanied by other adults averting their eyes or pretending not to see you, especially if your child is making high pitched noises or moving awkwardly. If these adults are also parents, you might hear them tell their children tersely, ‘don’t stare’ before quickly moving their children away from you and the offending noise.

When I arrive at my son’s school to pick him up, there is always one student there who comes running to the gate and who I affectionately call the welcoming committee. She is always on the look out for parents, letting teachers know whose parent has turned up and even giving updates on how far away your child is. She is the first to smile and wave to me and I always make sure I get out of the car, regardless of how busy or tired I am to go over and say hello. Sometimes children who are non-verbal also wander up to me curiously and I always make sure to warmly greet them too, offering them a high five as this is the way they greet each other at school.

Wouldn’t it be incredible for parents to start teaching their children to ‘say hello’, instead of ‘don’t stare’? So don’t avert your eyes – it takes a few seconds to warmly smile and say hello, even better if this is followed by a friendly wave or a high five. Such simple gestures can make the world of difference in someone else’s life and have the power to change their whole day for the better.