Category: Carers

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

Self-Care for Carers

Raising a child with a disability can be incredibly stressful. It is well known that chronic stress can cause many health issues, ranging from sleeping difficulties, chronic anxiety, clinical depression and a weakened immune system. While anything medical should be seen to by a doctor, it is also important to look at your life holistically and practice some self-care when you can.

For example:

  • Taking at least one hour of time to yourself a week to do things you enjoy – get a massage, read a book, watch a show/movie,
  • Incorporating a short practice of mindfulness into your daily routine – Box Breathing can help reduce stress and calm feelings of anxiety.
  • Mapping out your network of support so you know who to call upon when you’re in need of some assistance
  • Engaging in a practice of self-reflective journaling

NDIS – When Reviews Don’t Go As Planned (Part 1)

PART 1

I’ve recently been in the position where a scheduled plan review did not go as planned for my son. The LAC (Local Area Coordinator) was vocal in her opinion that my son’s plan had been well funded previously and he “wouldn’t be getting that again”. True to her word, his plan was slashed by 36%, leaving not enough funding for essential therapies, not even core supplies for incontinence.

The journey to rectify his plan is not yet over as will be explained in coming posts. However, he has now been given a plan that is substantially more suitable for his needs.

I would like to share the recommendations and advice that has been given to me in hopes of helping other families finding themselves in the same position.

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.

CHIME – A Framework for mental health recovery

Connection

Contact with peers

Good relationships

Support from others

Being part of the community

Hope

Optimism about the future

Believing in health

Feeling motivated

Positive thinking

Having dreams and aspirations

Identity

Having a positive sense of yourself

Feeling able to be yourself

Dealing with stigma

Seeing the whole person

Meaning

Making sense of your experiences

Knowing what’s important to you

Having purpose

Understanding your world

Feeling valued

Empowerment

Being responsible for your own wellbeing

Feeling capable

Being able to see your strengths

Learning by doing

Anxiety Strategies & Techniques – (3-3-3)

I will be writing a series about some simple techniques which could help children and adults with triggered anxiety to help manage their symptoms. (Please note that severe anxiety which is impacting significantly on a person’s life may need the intervention of medical professionals and trained therapists).

The 3-3-3 technique is a wonderful tool to use with children as it is easy for them to remember. The objective is for them to feel more mindful, focused and grounded when their anxiety is starting to feel overwhelming.

3-3-3 involves the person identifying 3 objects around them they can see, 3 things that they can hear and moving 3 body parts (ie their fingers, wrists and toes). It works to reconnect the person with their physical surroundings and become aware of their body movements instead of their symptoms of anxiety like intrusive thoughts. Some steps from Choosing Therapy:

Step 1: Focus on 3 Objects You Can See

Focusing on things that you can see helps you become visually aware of your surroundings. You can notice big objects such as a tree or a chair, or you can look for smaller, more discreet objects such as a pencil or a coin. The idea isn’t necessarily to have objects in mind that you want to see, but rather to focus on the world around you. This helps you deal with your anxiety by removing you from the mental chatter causing you stress.

Step 2: Focus on 3 Things You Can Hear

Pinpointing sounds is another great way to help you deal with anxiety. Diverting your attention to your environment can help you transition from a state of inward thinking to one in which you’re connected to your surroundings instead. However, depending on your location, you may have a hard time isolating sounds. Some things to listen for include a clock ticking, clacking of keys on a keyboard, or someone sniffling. If you are somewhere outdoors, you may notice leaves rustling in the wind, cars passing by, or dogs barking.

Step 3: Focus on 3 Things You Can Touch/Move

Lastly, find three things that you can touch or move. These can be within your reach or even parts of your body. Identifying tangible items is one of the fastest ways to ground yourself when you’re feeling anxious. Teaching yourself to focus on the physical environment helps you feel anchored and reminds you to be present.

Is Vitamin B6 helpful for anxiety?

My son’s neurologist suggested that Vitamin B6 could be tried to help lessen my son’s anxiety. He is having focal seizures, is autistic and non-verbal. While not a cure for anxiety, it was something that could be tried to help with symptoms.

It seems there are only small studies on its effectiveness for both anxiety and depression, but I did find a study showing that Vitamin B6, increases the body’s production of gamma-aminobutyric acid (GABA), a chemical that blocks impulses between nerve cells in the brain.

In the study, David Field, PhD, from the School of Psychology and Clinical Language Sciences at the University of Reading, said that Vitamin B6 helps the body produce a specific chemical messenger that inhibits impulses in the brain, and our study links this calming effect with reduced anxiety among the participants.”

The dose of Vitamin B6 was high in this study, 100mg. This would suggest that eating food rich in B6 may not be enough to make a substantial difference. However, it could be a worthwhile first step to increase foods with naturally occurring B6. Foods high in Vitamin B6 include fish, chicken, tofu, pork, beef, sweet potatoes, bananas, potatoes, avocados, and pistachios. 

I did end up trying a supplement which had Vitamin B6 in it and other calming ingredients which was formulated for children 8+. While definitely not a cure, the anxiety symptoms he was displaying at the time have definitely lessened. I saw an improved mood after about 2-3 weeks. The neurologist suggested using the brand Blackmores, who have a supplement with high Vitamin B dosages. I was unable to try this because my son cannot swallow tablets. However this may be something others might like to try.