Special Interests- They’re Important!

Special Interests- They’re Important!

Who knew threading beads and a trip to the laundromat could mean your kid would eat casserole? 

 

It is common for those on Planet Spectrum to be very passionate about a particular subject or object. A less friendly term thrown around is ‘obsession’. Be it trains, cars, horses, clocks, washing machines, necklaces, dinosaurs… you name it!

There have been many connections, breakthroughs, learning opportunities and tricky situations navigated all thanks to embracing passions and as we lovingly refer to them as motivators!.

According to the National Autistic Society:

Autistic people often report that the pursuit of such interests is fundamental to their wellbeing and happiness, and many channel their interest in studying, paid work, volunteering, or other meaningful occupation. The interest can:

 

  • provide structure, order and predictability, and help people cope with the uncertainties of daily life
  • give someone a way to start conversations and feel more self-assured in social situations
  • help someone to relax and feel happy

 

 

My little guy’s first passion was clocks passion was ‘clocks’. He was infatuated! Mister would see clocks and be so excited and full of joy. His happy flapping could have powered a wind farm!

 

We used his love of clocks to get us through many situations. When we had appointments in town, we would look at clocks and we would use them to redirect when stress was starting to build- “Oh look M there’s a clock let’s go and see if we can find more.” Often this was just the trick to get an anxious and almost frozen child to keep moving and coping.

 

We would allow ‘extra’ time so that there was always enough to look at clocks, so that we could provide a positive experience in a less than positive sensory environment, like the shopping plaza. As mentioned, shopping centres and plazas can be a nightmare for people with Autism. They are a sensory powerhouse led with many sounds, colours, people, bright lights, smells and textures.

 

When we visited health professionals, we could have a hard time. In his early days, Mister could not stand anybody looking, talking or touching him. Again we used his love of clocks to coax him into calm, while providing an excellent distraction.

 

Preparation, like any social outing, was essential. We wanted Mister to be as amicable as possible with the health professional, so before we went in for a consultation we would prepare; “Hmmm M, I wonder if the doctor has a watch? When we go into the doctor’s room, let’s see if she has a watch or a clock in there.” This would have a child going from a level of anxiety that had shut down potential to excitement about the possibility of seeing a clock or watch-let me in! We would start the consultation with “Hi doctor, we were wondering if you have a watch or clock in your of office?”

By this stage, Mister would have already spotted a clock on the wall but be able to connect with the doctor as he searched their arm for a watch. This would be followed by whatever conversation needed to be had by the professional- but we would often use more detail if M was becoming distressed or anxious. We would redirect back to the passion. “Oh M, look it’s a blue watch! Can you see it ticking?” You get the idea…bring it back to the passion where possible. The special interest is so familiar and has the potential to provide calm.

We learnt to use Mister’s passions for motivation! Many a clock collection was found on YouTube and used for rewards.

After the clock phase, M branched out to necklaces and washing machines. Necklaces were brilliant. Shopping trips included jewellery store crawls and frequent stop ins to admire bling. It also meant a barrier breakdown between Mister and people, particularly therapists.

We used Mister’s special interests to engage anywhere and everywhere we could. During speech, via daily play and just living. Through showing an interest in Mister’s passion, we were able to engage with Mister like never before, even without words.

The few times I have had to be away for the day I have brought back cheap necklaces so we were able to build that association of when mum goes, it’s a good thing. You can see how I’ve used the love of necklaces to alter an anxious situation fraught with separation anxiety into acceptance.

When Mister was on a food strike, I’d sometimes set up beads and string for threading. He would be threading, and I would be spoon-feeding. Not an ideal eating situation, but this example reiterates how helpful it can be to use special interests, and how they can provide a platform to cope and get through.

 

So what happens if your Spectrum Kid doesn’t have a special interest?

Our other poppet doesn’t seem to have such special interests. What now? For Miss, it’s all about talking, drawing and craft. So I guess you could call this kind of style her special interest. If Miss has a task that has something to do with her hands, this equals a happy and content disposition. If not, then this equals a whole lot of anxiety and when she doesn’t know what to do it leads to panic. Trust me when I say there have been plenty of days where we have done more craft than Mister Maker.

When we embrace these passions and special interests, we are able to connect with individuals, motivate, value, share and engage.

I have heard it said by lots of people that the ‘obsession’ part of Autism drives them mad, and new distractions need to be found. But if the apparent ‘obsession’ isn’t harmful to anyone, it can be a beautiful doorway into your child’s heart and mind.

Want to Ponder Autism more with us?

Stay tuned for our next article. Ponderings have managed to affiliate with Planet Spectrum and are pleased to offer you this link to the free resource The Flight Manual.

The Land of “Doors must be closed, and lids must be on”. Let’s talk Triggers.

On Planet Spectrum when we refer to a trigger, we are referring to something that creates a behavioural response. It is 'triggered' by something.There are triggers that need to be managed because they are an everyday part of life, and then there are triggers that can...

Special Interests- They’re Important!

Who knew threading beads and a trip to the laundromat could mean your kid would eat casserole? It is common for those on Planet Spectrum to be passionate about a particular subject or object..

Five Tips For Homeschooling

Homeschooling has always felt like more of an alternative option.
So what does one do when school is not an option, and they are left at home wondering and perhaps freaking out about where to start… Breath, we’ve got you covered!

Talking Endo and Inspiring Action

Talking Endo and Inspiring Action

Words by Katherine Stanley

I was first diagnosed with Endometriosis or Endo when I was 33. I’ve had symptoms since I was 16. 

I still remember my first really painful period. It was so heavy that I had trouble walking up the hallway to tell my Mum that I couldn’t go to school. The pain was so severe that I thought that maybe I was dying. I finally got to the kitchen doubled over in pain and crying. When we went to the local doctor, he told me that I probably had some retrograde bleeding and that it was normal.

In the 17 years that followed, I saw many doctors and made many trips to the Emergency Department. After a while, I stopped talking about the pain and adjusted my life around it. I would need 2-3 days off every month due to severe pain, and daily pain had become a part of my normal life. I didn’t like mentioning my pain because though I knew it was real; I always had this niggling imposter syndrome feeling – maybe I was actually crazy and just making it all up.

It was a relief when I was finally diagnosed with Endo. 

A relief to have a name to the illness that had taken over so many parts of my life and meant I always used all my sick leave. It was a relief to finally have proof that it wasn’t all in my head. I think it is quite striking that many women share the same story – they feel relieved when they get a diagnosis. I can’t imagine many other situations where people feel relieved to be diagnosed with a disease with no cure.

Endometriosis is where the tissue that is similar to the lining of the womb grows outside it in other parts of the body. Symptoms are varied for every woman. 

Common symptoms include fatigue, digestive and bladder issues, heavy or irregular bleeding and LOTS of pain!! Pain on or around a period, on or around ovulation, during or after sex., with bowel movements or when you urinate. The pain is often felt in the pelvic region, lower back and/or down the legs. It is also widespread. 1 in 10 women has it, making it as common as asthma and diabetes. Despite this, it takes 7-10 years to be diagnosed with Endo.  

 

With this in mind, I wanted to give back to the Endo community, and so last year, I created a support group called Talking Endo. 

At the support group, we have a speaker with expertise in working with women with pelvic pain, then we share a cup of tea and chat about how we all are, and what it is like living with chronic pain. Talking Endo has since evolved into a podcast, and I am in the process of turning it into a social enterprise. I am continually looking for ideas and ways that I can support a group of women that to date have felt unheard and unsupported.  

I am on a mission to change the Endo space for the next generation. I will not rest until women’s pain is believed, and women with pelvic pain feel supported and heard. If you have persistent pelvic pain, I urge you to go and speak to your doctor about it. And keep seeing doctors until you find one that listens to you and works with you to come up with a plan. If you have any questions, please feel free to contact me at @TalkingEndo on Facebook or talkingendogeelong@gmail.com

Kat Stanley

 

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Pay What You Can Afford Program a First For Australia

Pay What You Can Afford Program a First For Australia

I heard along the grapevine of an Australian beloved health professional offering a Pay What You Can Afford service.

Our team has never heard of such a program, and with the human race in crisis, we did a deep dive to find out what this was and how it could help people. Let’s be straight up- while many people are thinking of how they can afford to pay the rent or groceries and stay safe in a chaotic time; when you hear about a person whose very first priority is people and how to serve best – leaves us with a refreshing “Oh Wow” moment. 

Kindness in it’s purest form is a delight. Ponderers, we have featured her before, and now we touch base with her again. Faye Kendall is a beloved Geelong local, Osteopath and business owner; and these are her words. 

When I first started my osteopathic career, it never occurred that one day I would need to treat my patients without putting my hands on them.

As osteopaths, we primarily work with people’s neuro-musculoskeletal system (the muscles, bones, nerves, joints, tendons, ligaments and other tissues that help to support and control the movements of your body). I, like many other osteopaths, built my clinic off the back of getting people out of pain with an emphasis on using my ‘‘hands” to help people move better and feel better. 

Then, in March 2020, the COVID-19 pandemic hit Australia, and everything changed. 

My first thought with the new restrictions in place was “How are we going to support our patients through this if they can’t come and see us at the clinic?” Over the next few days, our clinic started reaching out to our patients to check in with them and see if there was anything that we could help them with. The responses we got in return were heartbreaking. 

Some of our patients had already been told that they had lost their jobs, and others told to expect the same in the coming weeks. I spoke with immune-compromised patients that were too scared to leave the house and patients who have chronic health issues who are afraid of what might happen if their usual therapy choices were no longer available to them. 

 

How were these people going to look after their family when they had lost their income? 

How would they stay healthy if they can’t leave their house? Would their condition deteriorate if they were unable to access their therapists that they relied so heavily upon?

I felt for my patients, and I felt for our community. Even if most of us haven’t yet been exposed to the virus physically, we are already feeling the mental, emotional and financial effects to which none of us has immunity. As a healthcare professional, I knew that we needed to come up with a solution that enabled our community to continue to put their health first no matter what their situation

With that in mind, the osteopaths at Whole Body Health and Wellness made a swift decision. We decided we needed to offer online consultations to support people in their health. With people in isolation- and with the teleconferencing tools we have at our fingertips like many in the medical profession- it seems an obvious choice. 

But, financially, what could be done to support the community? The solution is our offer of ‘Pay What You Can Afford’ payment option so that everyone has access to our services regardless of their situation. 

 

Whilst I believe hands-on techniques are amazingly effective, they are just one of the many tools we have in our osteopathic toolkit. 

You see, what I failed to tell my patients early on in my career is that Osteopathy is more than just a set of techniques; it’s an entire comprehensive philosophy of whole-body health. 

Without our extensive knowledge of anatomy, physiology, pathology and general healthcare diagnosis that we obtained during five years of University study the “hands-on” techniques we commonly use with patients would be meaningless. It’s the ability to diagnose, assess and manage conditions that form the majority of our osteopathic consultations and empower our patients to look after their health. 

With the help of technology, we are now able to offer our patients the same support, care and guidance that we would in our regular osteopathic treatments. 

In addition, implementing our ‘Pay What You Can Afford’ option throughout April 2020, we are aiming to support all of our community regardless of their financial situation. 

How does it work? Exactly as it sounds, you book an appointment and you decide what you can afford to pay. 

We are a community, and the go-to for those in the health and wellness sector is to do just that – to be of service and to help. So please, get in touch with us! Let us help at this very crucial time in our lives. 

Whole Body Health and Wellness – https://wholebodyhealthandwellness.com.au

Call: 03 5200 1044

Contact US

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+61 0401 409 499

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Story Queries: editor@ponderings.com.au

General Enquiries wordsmith@ponderings.com.au

Admin and Advertising: media@ponderings.com.au

Five Tips For Homeschooling

Five Tips For Homeschooling

Homeschooling has always felt like more of an alternative option.

So what does one do when school is not an option, and they are left at home wondering and perhaps freaking out about where to start… Breath, we’ve got you covered. As the Education board rolls out new updates, you may find these helpful!

What kind of teacher are you? Miss Honey from Roald Dahl’s Matilda? The all inspiring Ms Frizzle from The Magic Schoolbus?…. 

Or perhaps you might find yourself identifying more with Edna Krabappel that dates around and drinks on the job (hey no judgment here!)

The most important thing right now is to help our children feel safe, connected, happy and loved.

Across Australia, there are around 20,000 homeschooled students, and the numbers are growing.

With CO-VID19 here, and self-isolation imminent we are all in this together.

We’ve put together 5 simple tips to make homeschooling easier- you’re welcome!

1: Basic Routine

We’re not talking military precision here! However, a basic routine for homeschool is probably your best start. Creating a schedule for you and your children that caters for structured activities and (just as important) free time.

Get your kids involved in making the “school” timetable.

We follow the Australian curriculum of the literacy and numeracy block in the morning.

We have a play break then regroup to do something fun and creative, sporty or investigative.

Creating a routine is important for a number of reasons. This structure helps children feel more secure, and you’ll most likely find better behaved too! There is a feeling of safety when things are predictable, and expectations understood. The benefits extend from social-emotional to learning- if children are anxious and distressed, their brain will not be open to learning. Research shows that anxiety impacts a student’s working memory, making it difficult to learn and retain information. The anxious student works and thinks less efficiently, which significantly affects the student’s learning capability.(link)

2 Have Fun!

While playing teacher and being responsible for your child’s learning might seem daunting and perhaps something you had never considered- pause,- This can be fun! For everyone! 

The idea that you are going to be teaching your child/ren for 6-8rs a day is a myth that needs to be debunked quickly. The ratio of parent/carer to child is small, so there is more time for one-on-one focussed learning, and you will be surprised by what can be achieved. So what do you teach and how the heck do you teach it? 

A great way to include literacy is to read every morning. Independent reading if your chlid/ren is able, and also parent reading to the child. This can be storybooks, Reading eggs, flashcards etc.

A few basic ideas include:

Writing. Journals are great. Procedures- for example, cooking together and then recording the experience step by step. If your children are upper primary get them to write a persuasive letter- anything from “Why kids should have more screen time” to “Why it is a good idea to eat chocolate” there are no limits, and it’s guaranteed to bring a few laughs!

Handwriting could be practising letter formations. It doesn’t have to be limited to paper and pencil. This can be in the sand, in the fog on the shower screen, painting, in shaving foam.

Maths: Time. Money, Number. Shapes. Play card games, games with dice. Even snakes and ladders can be used for maths- counting on, number recognition! There are loads of free resources online and even some programs where kids can jump on an iPad or computer and “play maths” on screen! 

Spend quality time baking, creating, drawing, laughing, PLAYING is essential. Any images of 1950’s teaching in rows with repetition- adios! 

Research passion projects. The inquiry-based learning model. As a curriculum approach, inquiry-based learning builds from a natural process of inquiry in which students experience a ‘need to know’ that motivates and deepens learning. What a great time to connect with your child by learning about something that interests them! Bonus, your child will be much more engaged and WANT to be learning!

According to the Harvard Business Review articleCuriosity Is As Important As Intelligence“, fostering student curiosity builds their capacity for flexible thinking and the ability to handle complex problems.

 

3 Be Flexible

There will be days where schooling is not a priority. If you are feeling stressed or the anxiety is looming, back it off. Pause. Your child’s mental health is more important than ANYTHING. The same goes for you! 

Flexibility also extends to learning. If the kids are really enjoying an activity, if they are engaged and it’s taking longer than you originally planned- go with it! 

Work out what your child’s currency is! Consider trade-offs – x amount of reading/writing = x amount of screen time. The more positive experiences, rewards, and praise, the better.

Physical activities are a must! Chances are isolation will bring restlessness, frustration and the possibility of children climbing the walls and swinging from the rafters! 

Health experts across the globe report that exercise improves mental health by reducing anxiety, depression, and negative mood and by improving self-esteem and cognitive function. 

 

4 Opportunity for Life skills!

The bonus of not having to get kids TO school, the mad dash for breakfast, making school lunches, washing uniforms, packing bags is time. Time to slow down, breath and mindfully spend on learning other valuable tools. Yep, life skills.

Learning how to make breakfast, help prepare a meal, cleaning (parents unite! lol) 

Changing a tyre, washing the car, Planting, growing, Washing dishes/ clothes loading the dishwasher- 

Computer- hey, they might teach you! The list is endless.

All of these are important skills that sometimes get skipped or pushed aside can be given the attention they deserve. It’s all part of learning how to human in our world and nurturing independence. 

 

5 Be consistent.

Just like real teachers, there will be lessons or learning times that will be complete flops. There will be learning times that are fun. Either way, consistency is key. Connectedness in this crazy time is essential. We can connect with our kids through being present, learning together, participating in planned activities and sharing our time. The beauty of teaching is that you don’t need to know all of the answers. You can learn on the job! If you need help, ask! We have included a list of handy resources.

Handy resources- share

Smiling minds

!https://www.unicef.org/coronavirus/covid-19-parenting-tips

http://theeducatingparent.com/resourcedirectory.html

Reading eggs

Adapted mind https://www.adaptedmind.com/Math-Worksheets.html?campaignId=893889055&gclid=EAIaIQobChMIptfVgdq-6AIVh7uWCh1bwAwyEAEYASAAEgKYiPD_BwE

Mathletics https://www.mathletics.com/au/for-home/

https://fearlesshomeschool.com/quick-start-homeschooling/ loads of resources including template and more info about homeschooling

https://fearlesshomeschool.com/quick-start-homeschooling/

https://fearlesshomeschool.com/homeschooling-subjects/

 

The Land of “Doors must be closed, and lids must be on”. Let’s talk Triggers.

On Planet Spectrum when we refer to a trigger, we are referring to something that creates a behavioural response. It is 'triggered' by something.There are triggers that need to be managed because they are an everyday part of life, and then there are triggers that can...

Special Interests- They’re Important!

Who knew threading beads and a trip to the laundromat could mean your kid would eat casserole? It is common for those on Planet Spectrum to be passionate about a particular subject or object..

Five Tips For Homeschooling

Homeschooling has always felt like more of an alternative option.
So what does one do when school is not an option, and they are left at home wondering and perhaps freaking out about where to start… Breath, we’ve got you covered!

Five Tips for Helping Families with Autism

Families with Children on the Autism Spectrum are a part of our community. If you are lucky enough to have a friend or family member with Autism, you may find yourself wondering how you can best help. In one of the largest studies of its kind, Ruth L. Fischbach PhD...

Contact US

Phone

+61 0401 409 499

Email

Story Queries: editor@ponderings.com.au

General Enquiries wordsmith@ponderings.com.au

Admin and Advertising: media@ponderings.com.au

Five Tips for Helping Families with Autism

Five Tips for Helping Families with Autism

Kate O'Donnell

Kate O'Donnell

Wordsmith, Teacher & Advocate

Families with Children on the Autism Spectrum are a part of our community.

If you are lucky enough to have a friend or family member with Autism, you may find yourself wondering how you can best help.

In one of the largest studies of its kind, Ruth L. Fischbach PhD found a significant amount of isolation and even outright rejection of children and their families. More than 65 percent of the children were sometimes or often avoided or left out of activities.

Forty percent of the parents said they isolated themselves from friends and family because of their child’s autistic behaviours. And 32 percent said other people excluded them from social events and activities.

Almost 80 percent of the parents said stigma had been extremely, very or somewhat difficult in their lives.From research and extensive experience, we take the guesswork out and give you the most practical tips for helping families with Autism. You are welcome!

Tip #1 for loved ones – If you don’t know what to say- say it! 

Tell your person “I find it really hard to know what the right thing is to say and I want to support you the best way I can. Could you give me an idea of how I can help? Or what I can say that will help you in all of this?” Choosing not to say anything is worse and alienating. Be honest and be gentle.

Tip #2 Offer to attend workshops, read books or go to things with them to help.

When you understand Autism, it can be an amazing and rewarding experience. When we are together, Planet Spectrum can be really inspiring. When we feel supported and learn together, it takes away the feeling of isolation. By attending workshops, you can learn helpful insights and tools to help your friend or family. Committing to understanding is your ticket to being inclusive and supportive. Nothing says acceptance more than others willing to actively learn.

 

Explain to your support people that Autism is a part of your life now and therefore, it has become part of theirs. Quite often loved ones are at a loss as to how to help, what to say, what to do, and how to support you. Start keeping them informed, start that conversation with something like ‘we are trying to find a way through this new information, and it’s making us feel like____________. I appreciate you taking the time to listen.’ 

Keeping your support people informed and in the loop assists everyone.

Some folks in your life might already do this. Some won’t be, simply because they might not know HOW TO. But the fact is you are standing on Planet Spectrum, so chances are you will come across the most useful and educational point first- so SHARE THEM! If it’s useful and helpful for you and anyone that looks after your child, it’s worth sharing.

Start looking locally for workshops, sessions and insights you can attend about Autism. There are conferences and events in most states, webinars online etc. You need to start educating yourself by networking with others who are sharing Planet Spectrum with you. This book is a great start. I wasn’t a big ‘joiner’, and you might not be either, and that’s ok, but education is everything with Planet Spectrum, and you will collect a treasure trove of useful ideas and tips doing it.

Source a support group. Facebook was an excellent resource for me finding other parents to talk to, laugh with and feel with.

Connecting with other people in similar situations from the comfort of your own home and space can be really positive if used in a positive way. Useful tips, common ground and empathy can often be a great comfort and reduce the feelings of isolation. Make sure it’s a positive environment; you don’t want to be hanging out in-person or online with negative people. Negativity is like the flu and can be very contagious. At the beginning of this journey, you can be quite vulnerable, so steer clear of negative environments.

On a bigger scale, I think it’s really important for people to talk to each other about Autism. Talking about it raises awareness, it informs, it educates others that Autism is just one part of a person. Because right now for you it might feel like the biggest defining moment of your and your child’s life, when in fact it’s only a part of your child. Talking about Autism opens up a dialogue of what others can do to best support.

TIP #3 Try and create ways the family and friendship groups can accommodate the needs of this little person and their mum or dad in social situations where you all get together. 

There needs to be room for everyone, and this is one of the greatest gifts you can give.

Think about the sensory environment- how many people, quiet areas, structured events. Simply asking a family or parent HOW you can make transitions easier, lessen triggers or accommodate. Consider what time if you are hosting an event, the food options and what you may need to include. For example, not lighting fragrant candles inside, cooking meat or strong smelling food outside, putting dogs/animals away, not having loud music.

TIP #4 – Get a journal, a workbook, open a computer Word document and save it in a FILE. 

Every time you come across something useful, educational and helpful, put it in there. Save it under the topic it relates to. Copy and Paste will become your best friend. If you’ve found a useful website copy and paste the link autism into a file so you can look it up later. I did this A LOT, and every time I needed info, it was at my fingertips. 

 

Tip #5- Listen without judgement.

Navigating Autism can be tricky. There is so much to learn, understand and as wonderful as it is- there are also many challenges. Holding the space for a parent to process, talk about and bounce ideas without judgment is so important, and one of the most supportive gestures you can gift. (wine and chocolate optional, although bonus points for each!)

So you made it to this point of the article? Congratulations! We applaud you on your effort to be inclusive and supportive. Through awareness, education, understanding and kindness, you are helping change the space for Autism. You are helping reduce the stigma, isolation, and being a really decent human! 

Want to Ponder Autism more with us?

Stay tuned for our next article. Ponderings has managed to affiliate with Planet Spectrum and are pleased to offer you this link to the free resource The Flight Manual. 

 

The Land of “Doors must be closed, and lids must be on”. Let’s talk Triggers.

On Planet Spectrum when we refer to a trigger, we are referring to something that creates a behavioural response. It is 'triggered' by something.There are triggers that need to be managed because they are an everyday part of life, and then there are triggers that can...

Special Interests- They’re Important!

Who knew threading beads and a trip to the laundromat could mean your kid would eat casserole?    It is common for those on Planet Spectrum to be very passionate about a particular subject or object. A less friendly term thrown around is 'obsession'. Be it...

Five Tips For Homeschooling

Homeschooling has always felt like more of an alternative option. So what does one do when school is not an option, and they are left at home wondering and perhaps freaking out about where to start... Breath, we've got you covered. As the Education board rolls out new...

Five Tips for Helping Families with Autism

Families with Children on the Autism Spectrum are a part of our community. If you are lucky enough to have a friend or family member with Autism, you may find yourself wondering how you can best help. In one of the largest studies of its kind, Ruth L. Fischbach PhD...

Contact US

Phone

+61 0401 409 499

Email

Story Queries: editor@ponderings.com.au

General Enquiries wordsmith@ponderings.com.au

Admin and Advertising: media@ponderings.com.au

My child has Autism. Now what?

My child has Autism. Now what?

Kate O'Donnell

Kate O'Donnell

Wordsmith, Teacher & Advocate

Every day, month and year, professionals and experts are getting closer to working out the whys of Autism.

Autism Spectrum Australia (Aspect) has revised its autism prevalence rates from 1 in 100 to an estimated 1 in 70 people in Australia on the autism spectrum. That is an estimated 40% increase or around 353,880 people. According to Aspect CEO, Adrian Ford, the new number reflects recent changes in diagnostic criteria and new national and international research.

But one of the biggest misconceptions is that once you have a diagnosis, you are set with a plan, a how-to and a ‘do this’ now. This is not the case. 

You need to become the Planet Spectrum expert when it comes to your little individual.

That’s another reason I wrote Welcome to Planet Spectrum-there was nothing like this available to me at the time. I needed a resource!

First things’ first- Get Educated. As you go along, you will start to establish a bank of information. Build Your Planet Resources; collect the information and literally put it in one place so you can refer back to it.

You can do this, and you will one step at a time. It’s ok if you don’t know what to do, neither did I! But you can and will. Taking those little steps and learning each small thing about your child is like accumulating clues and tools for the box that you can draw from.

As you are building your resources, you will be recording, writing and creating a reference point.

This also helps to alleviate feeling overwhelmed with too much information. Getting things out of your head and onto paper is an age-old practice in self-preservation and usefulness.

You can also use this info to share with your support people. Who are they you ask? Whether you like it or not, you are going to need support-people. They might be parents, grandparents, relatives, friends, professionals, but you need them. This is a community Planet, not a one-man show. Involving loved ones and the folks around you is really important, it can sometimes be hard, I for one never really have been one to ask for help. Ms Independent. Otherwise known as, AKA ‘no I don’t need help, I’ve got this.’ But I promise you it’s not the best road to go alone. Bring in your support, look around, reach out a hand or start a conversation.

 

Explain to your support people that Autism is a part of your life now and therefore, it has become part of theirs. Quite often loved ones are at a loss as to how to help, what to say, what to do, and how to support you. Start keeping them informed, start that conversation with something like ‘we are trying to find a way through this new information, and it’s making us feel like____________. I appreciate you taking the time to listen.’ 

Keeping your support people informed and in the loop assists everyone. 

Some folks in your life might already do this. Some won’t be, simply because they might not know HOW TO. But the fact is you are standing on Planet Spectrum, so chances are you will come across the most useful and educational point first- so SHARE THEM! If it’s useful and helpful for you and anyone that looks after your child, it’s worth sharing.

Start looking locally for workshops, sessions and insights you can attend about Autism. There are conferences and events in most states, webinars online etc. You need to start educating yourself by networking with others who are sharing Planet Spectrum with you. This book is a great start. I wasn’t a big ‘joiner’, and you might not be either, and that’s ok, but education is everything with Planet Spectrum, and you will collect a treasure trove of useful ideas and tips doing it.

Source a support group. Facebook was an excellent resource for me finding other parents to talk to, laugh with and feel with. 

Connecting with other people in similar situations from the comfort of your own home and space can be really positive if used in a positive way. Useful tips, common ground and empathy can often be a great comfort and reduce the feelings of isolation. Make sure it’s a positive environment; you don’t want to be hanging out in-person or online with negative people. Negativity is like the flu and can be very contagious. At the beginning of this journey, you can be quite vulnerable, so steer clear of negative environments.

On a bigger scale, I think it’s really important for people to talk to each other about Autism. Talking about it raises awareness, it informs, it educates others that Autism is just one part of a person. Because right now for you it might feel like the biggest defining moment of your and your child’s life, when in fact it’s only a part of your child. Talking about Autism opens up a dialogue of what others can do to best support. 

 

My hope for the future is that this changes dramatically.

Wit more complete understanding happens for the masses about what Planet Spectrum REALLY is, and how different DOESN’T mean negative.

Ask your support people to attend information sessions, to come along to appointments if you feel comfortable sharing. Ask them along to these events; you are learning together. Back up is always great. I would sometimes ask a friend or relative to come with me if they could, so that should a meltdown occur and I needed to access important information I had help. They can learn too, two heads and two lots of helping hands are better than one.

Quite often lacking knowledge feels like a hurdle to assistance. When people don’t know what to say or do it can end in awkward silences and misguided attempts to help or not help. The stories I have heard from parents who find themselves seemingly alone because everyone around them is at a loss of how to help can lead to frustration, loneliness and ostracism from the community you had before you landed on Planet Spectrum. 

It might be that loved ones think they are helping but are coming across as interfering too much. It can swing both ways, and the one answer to both is COMMUNICATION. Calm, pleasant, but informative communication is key.

Once they begin being informed, members of your shared journey on Planet Spectrum, are better equipped to assist and love and don’t forget they too can enjoy and grow with this beautiful little person so much more effectively. It’s beneficial all round.

 

If you feel like you might be missing out on the activities that you loved before and are feeling left out from now, try and think up a way to change this. 

Can you get everyone together in a way that is better suited to your little person’s needs? For example, we felt really left out of a particular Boxing Day cricket match held every year at my sister’s house. It was a family tradition that we now felt we couldn’t be a part of due to the number of people, the noises, the commotion: all triggers to our little guy. If I even tried, it would result in days of distress and trauma at home. Our solution? We all go together and say hello to everyone for about twenty minutes (with fair preparation of course) then one of us returns home with the children so the other partner can enjoy the day and vice versa. 

We take it in turns. If you do not have a partner that can assist you, it’s time to make some new traditions. You might miss out on that one event, but you can organise another one that is more’ Autism friendly’. Either by organising some respite or smaller groups of manageable grown-ups.

For example; we have a special tent in Mister’s room, which is his time out area when he feels like space. I will host an afternoon tea or a small group of people in an area I have created that is lovely to be in and is well away from Mister’s room. He can opt to join in, and when it’s too much, he can go and reprieve. He knows he can escape to his kingdom whenever he needs to. We created a new tradition together, and it’s been lovely for everyone. I got a kick out of creating a special space for guests, and he got a ‘magical playhouse’ in his bedroom. It was a positive experience, and this is all about finding positives.

Want to Ponder Autism more with us?

Stay tuned for our next article. Ponderings have affiliated with Planet Spectrum and are pleased to offer you this link to the free resource The Flight Manual. 

 

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