You, Me and Disability

It took a radio interview for Janelle McMillan to get a reply from NDIS. What about everyone else? - ABC listen Janelle McMillan contacted the NDIS about her plan in January 2023. It took her going to the media more than a year later to get a response.

🎄 Merry Christmas from Linc, Spud and Kate. 🎄

From our family to yours, we hope your Christmas will be all you dreamed of and more.

We wish you a day full of fun, acceptance, inclusion and most of all love.

Let Christmas 2023 be your most memorable yet!

🙌🏻 this! ❤️

🎄Autism Night Before Christmas:🎅🏻

Twas the Night Before Christmas
And all through the house
The creatures were stirring
Yes, even the mouse

We tried melatonin
And gave a hot bath
But the holiday jitters
They always distract

The children were finally
All nestled in bed
When nightmares of terror
Ran through my OWN head

Did I get the right gift
The right color
And style
Would there be a tantrum
Or even, maybe, a smile?

Our relatives come
But they don’t understand
The pleasure he gets
Just from flapping his hands.

“He needs discipline,” they say
“Just a well-needed smack,
You must learn to parent…”
And on goes the attack

We smile and nod
Because we know deep inside
The argument is moot
Let them all take a side

We know what it’s like
To live with the spectrum
The struggles and triumphs
Achievements, regressions…

But what they don’t know
And what they don’t see
Is the joy that we feel
Over simplicity

He said “hello”
He ate something green!
He told his first lie!
He did not cause a scene!

He peed on the potty
Who cares if he’s ten,
He stopped saying the same thing
Again and again!

Others don’t realize
Just how we can cope
How we bravely hang on
At the end of our rope

But what they don’t see
Is the joy we can’t hide
When our children with autism
Make the tiniest stride

We may look at others
Without the problems we face
With jealousy, hatred
Or even distaste,

But what they don’t know
Nor sometimes do we
Is that children with autism
Bring simplicity.

We don’t get excited
Over expensive things
We jump for joy
With the progress work brings

Children with autism
Try hard every day
That they make us proud
More than words can say.

They work even harder
Than you or I
To achieve something small
To reach a star in the sky

So to those who don’t get it
Or can’t get a clue
Take a walk in my shoes
And I’ll assure you

That even 10 minutes
Into the walk
You’ll look at me
With respect, even shock.

You will realize
What it is I go through
And the next time you judge
I can assure you

That you won’t say a thing
You’ll be quiet and learn,
Like the years that I did
When the tables were turned…….

~ By Cindy Waeltermann

All was calm at the station,
Not a meltdown on sight.
Not a word needed,
But a core memory was made
As two young boys fulfill a dream.

Move over Fireman Sam!!.
Linc and Spud reporting for duty.

Thanks to Caz and the Midway Point fire brigade for making this happen.

The boys love their Christmas tree made by Jack and the Broad Bean Stalk.
What an extraordinary young Man!
Head over to the next market and grab one,
You won't be disappointed.

Jack and his crew have been busy creating Christmas Trees in a multitude of colour schemes.
They will be available for sale ($30) at this Sunday's HHMM - Hobart Handmade Makers Market from 10-2pm.
Happy to put them on hold if you message.

1000 WORDS

Some would say this picture is worth 1000 words.

Just looking at this picture you can take away where it was taken. At a beach.

The kind of night it was. Still and with a full moon.

Now let's take that same concept and apply it to communication.

Someone's body language, facial movements and sounds.
Are also worth 1000 words and if not more.

The question I get asked a lot as a mother of children with complex communication challenges is "How do you know what they want or how they're feeling?"

The answer is quite simple.

I don't just wait for their words or for them to use their AAC. I look at their body language, facial movements and even listen for the smallest of sounds.

Verbal or non verbal we all communicate like this. We're just perhaps unaware of it or pay any attention to it.

Now if we just take a moment to be aware of ourselves and others and also in the ways in which we communicate.

We'd soon realise we have all we need to be able to communicate with someone with complex communication challenges.

IT'S OK.

If being a special needs parent has taught me anything its ok to not be ok and know what is next.

Its ok.... To not have the answers or solutions 100% of the time.

It's ok.... Not to know which is the right path to take.

It's ok.... If what you thought would be the best solution, wasn't.

It's ok.... To ignore all those voices and opinions telling you you're not enough or you need to do more.

I used to be so hard on myself and admittedly I still am quite hard on myself when I don't have the answer or solutions that my children need. Even worse I start listening to those voices and opinions and start to doubt every decision I make.

It's time to stop doubting ourselves and realise its ok.

Some very wise people in mine and my children's life have helped us see that it's not all about what's happening in this moment but also what we have achieved to date.

And just like that as if it were magic you realise that there have been many a storms you and your children have faced or moments you were unsure and despite how troubling, worrying or scary they were, you weathered them and made it through to clearer skies.

Oh boy! have we come far.

It's Ok to not have all the answers.

Just put one foot ahead of the other, make that list and tick off the things you can, have that coffee with friends and most importantly LOOK AFTER YOU!

For they can't weather that storm with out you.

Kate x

Inclusion and getting to know disability tip #2

Our next tip comes from Hudson a cheeky 7 year old lil guy from Tassie.

👋 Hey Hudson 👋

“Non verbal doesn’t mean non coherent”

When Hudson participates out in the community he likes when members of the community speak to him about things that concern him.
When people speak only to his parents or support friends about him it can make him feel invisible and not a valued member of society.

**if you live with a disability or care for someone with a disability and what to share your tip with the community sends us a DM

Our very first inclusion and get to know disability tip comes from Lincoln.

👋Hey Lincoln👋

Lincoln is a 9 year old lad from Tassie and he would like you to know:

“Think not that I have a disability but a different ability”

Though he has a different ability, he does not let this define him. Lincoln likes to make friends where ever he goes and likes to watch traffic and others riding their bikes. Lincoln uses many forms of communication AAC and Verbal just to name two.

**If you live with a disability or care for a person living with a disability and would like to have your say send us a DM**

Our Hobart Kid's Sports Day is now fully booked.
However we still have plenty of spots available for our Devonport Kid's Sports Day. ❤️

We are very excited to announce that Softball Tasmania AFL Tasmania ParaQuad Association of Tasmania Inc. GKR Karate Region 18 Tasmania, Australia are all going to be part of this very fun FREE EVENT for kids with different physical, sensory and intellectual abilities.
For more information and registration visit the variety website. https://www.variety.org.au/tas/programs/vksd/

When Change Is Needed Be The Change.

Lately we’ve been reflecting on our Summer Holidays; as the Easter Holidays are fast approaching us.

We’ve been reflecting on our experiences and activities while participating in the community.

It’s upon reflecting on these activities and experiences that we discovered there is a lot more to be done in helping people with in our community be more aware, educated and inclusive about disability.

To be able to achieve this change it’s important to hear first hand accounts from people who live with a disability and their families/carers themselves; on what an inclusive society and community looks like and means to them.

It’s by sharing these stories, experiences, advice, tips and tricks that we’ll help pave the way to a more inclusive community and future.

The path to change continues here.

**if you would like to share your story, experience, advice, tips and tricks please send us a DM or comment below.

I couldn’t have explained it better even if I tried!

Self-regulation does not mean regulating in an isolated vacuum free of other living things. Some self-regulate by identifying a need for support from a safe human, animal, tree, etc. and seek that support. It is still self-regulation, with a mix of co-regulation that is needed in that moment.

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Image Description: A person with a red shirt and short blonde hair looks away from the camera while hugging a golden retriever dog. The dog looks at the camera and smiles. Behind them are mountains.

We need 20 more volunteers to help our surfers have a fun day at the beach :) can you help out on Sunday Feb 26? click here to register ...
https://forms.office.com/Pages/ResponsePage.aspx?id=zFV0OP3DG0OlpOVhR8Lp2--6rpRJQ8tDjfVZgSCXeFBUMkdRRVNHMUtBMEpKN0owVlJCQ1VOSFdORS4u

Perfect explanation off AAC and wait times. This gives people with CCN the chance to respond to you. Please be patient 😀

AAC takes time! That means you have to to slow down and give people who use AAC time to communicate! Probably more time than will feel comfortable to you. They have a lot to consider and coordinate to use their AAC. Much of what they need to do is internal meaning you won't be able to see it! Give them the time! Wait quietly with your attention on them so you don't add to their processing load.⁣⁣
⁣
Exactly how much wait time is needed depends on your unique learner, but somewhere between 15-60 seconds is a good place to start. Individuals vary in how automatically they can complete the tasks listed on this visual. For some, it takes intentional, focused thought. The more complex their support needs (e.g., language processing, motor planning, vision), the more time they may need. Also, consider that it will be more challenging when they are responding to you compared to when they initiated the conversation.⁣⁣

An an emergent AAC user does not respond after some wait time, it's okay to proceed with the activity to keep it engaging. That said if you see them attempting to use their system, stop and listen! ⁣
⁣
Image description: Green clock in center of image with text around it, Bitmoji with communication device at bottom left. Text reads as follows:⁣
Heading: AAC & Wait Time: You've got to give them time to...⁣
Process what was said⁣
Consider their thoughts and perspective⁣
Shift attention to and from other thoughts and stimuli in the environment⁣
Consider if it's worth the effort to respond⁣
Formulate a response in their head⁣
Consider if it's worth the effort to respond⁣
Consider where needed language is in the AAC system⁣
Organize their body to access the AAC system⁣
Select language on their AAC and play the message⁣
Footer: Especially if you started the conversation.⁣

Today for just a few minutes we lost control. Just for few short minutes, but long enough for those few minutes to feel like a lifetime.

For a few minutes we were alone. Alone with no understanding, awareness or village.

We were transported back in time.

Back to when no one knew what to do, say or how to act.

A few short moments is all I needed to realise we still have a long way to go in educating, advocacy and spreading awareness.

All it takes is a few minutes. A few minutes to go back in history.

But now, It’s time.

Time to stop going backwards and pave a path forward.

Pathing a path so today does not happen again.

So those short few minutes become a vision.
A vision of people working together and together everyone will feel safe.

Educate
Advocate
Awareness
Inclusion

The boys and I were lucky to be able to write some clip tips for the newest issue of InFOCUS magazine for Agosci.

Agosci Inc is a great organisation which promotes the importance of AAC and the benefits of using AAC with people with complex communication needs.

Since becoming members Lincoln, Hudson and myself have learnt a great deal and gained confidence in our interactions with each other and others. I was fortunate enough to attend their conference here in Hobart in 2022 and I left feeling like the confident communication partner I always wanted to be since we started our AAC journey.

Highly recommend checking them out and becoming a member. You won’t regret it!

🎇 Happy New Year to one and all 🎆
We’re excited to see what 2023 has install for Linc and Spud!
2022 was quite the year.
One like no other!
Never a dull moment in this crazy life and we’re incredibly lucky to be able see another new year when many do not.
2023 is our year to see and make change.
LET’S DO THIS!!!!

📸 Inclusion captured in a photograph 📸

We’ve been to many parks, Met many people but never have we experienced inclusion like we did today.

Lincoln was playing and exploring the water when these children wanted to join him. They weren’t asked or needed encouragement to play with Lincoln from their parents. They purely seen his enjoyment and enthusiasm for the game he was playing, exploring and experimenting with the water.

Pure inquisitive and wanting to play too.

This mumma had such a warm heart to see and hear the wonder of Lincoln having friends.

He’s tried at many parks to make friends. Often children run away and make him the “piggy in the middle” or the person whom is “it” leaving it impossible for him to catch up.

To the parents of the wonderful children playing Lincoln today. Your children are a credit to you and I am incredibly grateful Lincoln got the opportunity meet and play along with them today.

This is what we aim to achieve with our page, understanding, acceptance and inclusion.

The future will be bright and fun for children living with disabilities if these three wonderful children are a glimpse of future generations.

Merry Christmas From Chef Linc and Spud! We hope your Christmas is magical and full of love and laughter 🎄🎅🏼🎁