Patience takes time
We want things to happen faster.
We look for instant progress.
But autism has taught me that some of the most meaningful achievements can't be rushed.
There have been times when we've worked on something for months.
The same strategy.
The same routine.
The same encouragement.
Over and over again.
Sometimes it feels like nothing is changing.
Then one day, almost without warning, Max does something he couldn't do before.
Not because it happened overnight.
But because every little step before that moment mattered.
Those tiny moments of repetition.
The patience.
The consistency.
They were all building towards something.
Autism has taught me to slow down.
To stop measuring success by how quickly it happens and start celebrating that it happened at all.
Because every child has their own timeline.
And every step forward, no matter how small or how long it takes, is still a step forward.
So if you're waiting for your own breakthrough, whether it's with your child, your family or even yourself, don't give up.
Sometimes the greatest progress is happening long before we can actually see it.
If you'd like to support my Brilliant Brunch fundraiser, every donation, big or small, helps create a more autism friendly Australia. Link to donate is below:
https://www.somethingbrilliant.org.au/fundraisers/kellylindsay/a-brilliant-brunch
💙 Raising awareness. Building understanding. One conversation at a time 💙
If you've met one autistic person...
One of the things I hear quite often is...
‘I know someone with autism and they're nothing like Max.’
And that's exactly the point.
Autism isn't a one size fits all diagnosis.
Every autistic person is unique.
Some are verbal.
Some aren't.
Some love being around people.
Others find social situations overwhelming.
Some need a little support.
Others, like Max, need significant support every single day.
If you've met one autistic person...
You've met one autistic person.
Not all autistic people think the same.
Communicate the same.
Experience the world the same.
Or need the same supports.
That's why comparisons can be so unhelpful.
Max isn't ‘more’ autistic than someone else.
He's simply Max.
He has his own strengths, his own challenges, his own personality and his own way of seeing the world.
The more we understand that autism looks different for everyone, the easier it becomes to replace judgement with understanding.
Because every autistic person deserves to be accepted for who they are, not compared to someone they're not.
If you'd like to support my Brilliant Brunch fundraiser, every donation, big or small, helps create a more autism friendly Australia. Link to donate is below:
https://www.somethingbrilliant.org.au/.../a-brilliant-brunch
Raising awareness. Building understanding. One conversation at a time Celebrating siblings
But today, I want to talk about someone else.
His sister, Olivia.
Being the sibling of a child with additional needs isn't a role she chose.
It's simply the life she was born into.
She's grown up knowing that plans sometimes change.
That we might have to leave early.
That some family outings just aren't possible.
That Mum or Dad might need to split up so everyone can still do the things they love.
She's learned to be patient when things don't go to plan.
She's learned to celebrate the little wins right alongside us.
And she's learned that kindness doesn't cost a thing.
One of the things I'm most proud of is watching the way she loves her brother.
She doesn't see him as ‘the autistic kid.’
She sees him as Max.
The little brother who makes her laugh, keeps life unpredictable and has taught our whole family to look at the world a little differently.
Has it always been easy for her?
No.
There have been moments where she's missed out, had to wait, or watched our attention be pulled in another direction because Max needed us.
Those moments aren't lost on me.
But despite all of that, she's growing into a compassionate, resilient and incredibly understanding young woman.
Autism has shaped Olivia's childhood too.
Not by defining it...
But by helping shape the remarkable person she's becoming.
And I couldn't be prouder.
If you'd like to support my Brilliant Brunch fundraiser, every donation, big or small, helps create a more autism friendly Australia. Link to donate is below:
https://www.somethingbrilliant.org.au/.../a-brilliant-brunch
Raising awareness. Building understanding. One conversation at a time
Community matters
They say it takes a village to raise a child.
For families like ours, that village looks a little different.
It's the teacher who sees past the behaviour and looks for the reason behind it.
The therapist who celebrates the smallest breakthrough because they know how hard it was to get there.
The support worker who takes the time to build trust instead of expecting it overnight.
The parents who still invite Olivia for sleepovers and never make us feel different.
The friends who don't judge when we have to cancel at the last minute.
The neighbours who surround us with kindness, who understand that life isn't always quiet or predictable and who make us feel supported instead of judged.
The people who smile instead of stare when Max is having a hard day.
And it's all of you.
The people who follow our journey.
Who read these posts.
Who ask questions because you genuinely want to understand.
Who leave kind words on the hard days and celebrate the good ones right alongside us.
You might not realise it, but every message of encouragement, every share, every donation and every conversation helps remind us that we're not walking this journey alone.
Autism can feel incredibly isolating at times.
But kindness has a way of making the world feel a little smaller and a little less lonely.
So today, my food for thought is this...
Never underestimate the difference you can make in someone else's life.
Whether you're a teacher, a therapist, a friend, a neighbour, a family member or even someone who simply chooses kindness over judgement, you are helping to build a community where families like ours feel seen, supported and accepted.
And that can mean more than you'll ever know.
If you'd like to support my Brilliant Brunch fundraiser, every donation, big or small, helps create a more autism friendly Australia. Link to donate is below:
https://www.somethingbrilliant.org.au/.../a-brilliant-brunch
Raising awareness. Building understanding. One conversation at a time Routine isn't about being stubborn
One of the things people often say is, ‘He just needs to learn that plans change.’
If only it were that simple.
For Max, routine isn't about being stubborn or wanting things his own way.
Routine helps him make sense of a world that can often feel confusing and unpredictable.
He doesn't understand that school goes back on a certain date.
He doesn't count down the days or get excited to see his teacher.
Instead, he understands through patterns.
His school uniform comes out.
His bag is packed.
Breakfast is a little different.
We walk outside to get in his assisted travel vehicle.
Those familiar routines tell him what's happening.
When those routines change unexpectedly, it can feel like the ground has shifted beneath his feet. Something that seems small to most of us can be overwhelming for him because the predictability he relies on has disappeared.
That's why we spend so much time preparing for change. We use routines, repetition and consistency to help him feel safe.
Do unexpected changes still happen?
Of course they do.
But we don't build routines to stop Max from experiencing life.
We build them so he has the confidence to cope with it.
If you'd like to support my Brilliant Brunch fundraiser, every donation, big or small, helps create a more autism friendly Australia. Link to donate is below:
https://www.somethingbrilliant.org.au/.../a-brilliant-brunch
Raising awareness. Building understanding. One conversation at a time Autism isn't always visible
The school drop offs.
The therapy appointments.
The meltdowns.
The endless washing and cleaning.
But there's another side that no one really sees.
The mental load.
It's lying awake at night wondering if tomorrow will be a good day.
It's constantly thinking three steps ahead.
What if the routine changes?
Have I packed everything he might need?
Will this place be too overwhelming?
What if he runs?
What if he refuses his medication?
What if the school calls?
It's remembering appointments, filling out paperwork, chasing funding, replying to emails, organising supports and trying to stay one step ahead so Max feels safe and supported.
Some days, it's exhausting.
Not because I don't love being Max's mum.
But because my brain is never really able to switch off.
Even when the house is quiet, my mind is already thinking about tomorrow.
The funny thing is, after a while, it just becomes normal.
You don't even realise how much you're carrying until someone asks how you're doing.
If you know someone caring for a child with additional needs, remember that the things you can see are only part of the story.
Sometimes the heaviest things we carry are the ones no one else can see.
If you'd like to support my Brilliant Brunch fundraiser, every donation, big or small, helps create a more autism friendly Australia. Link to donate is below:
https://www.somethingbrilliant.org.au/fundraisers/kellylindsay/a-brilliant-brunch
💙 Raising awareness. Building understanding. One conversation at a time 💙
School isn't respite
One comment I've heard more than once is...
‘At least you get a break while Max is at school.’
I know it's usually said with good intentions.
But the reality is very different.
School has never been a guaranteed ‘break’ for our family.
There have been terms where Max has only managed a handful of full days. There have been suspensions, reduced hours, early pick ups and countless phone calls asking me to come and collect him because he was having a really hard day.
Almost every day this year I have had to drive a 90 minute round trip to pick him up early because of his reduced hours.
And even during the few hours he is at school, my phone is always close by because I never know if it's going to ring.
When people describe school as respite, it overlooks everything that happens behind the scenes.
It overlooks the meetings, the planning, the communication between home and school, the worry about how the day is going and the emotional toll of knowing your child is struggling.
Please don't get me wrong, I am incredibly grateful for Max's teachers and support staff. They genuinely care about him and work so hard to help him succeed. We're all working towards the same goal - helping Max feel safe, supported and able to learn.
But school isn't respite.
It's education.
And for families like ours, it's another place where we work together every single day to support our child.
If you'd like to support my Brilliant Brunch fundraiser, every donation, big or small, helps create a more autism friendly Australia. Link to donate is below:
https://www.somethingbrilliant.org.au/.../a-brilliant-brunch
Raising awareness. Building understanding. One conversation at a time Inclusion starts with understanding
People often talk about inclusion.
But inclusion isn't just inviting someone to be there.
It's making sure they can actually be part of it.
For our family, inclusion isn't expecting Max to fit into every environment exactly as it is.
It's understanding that sometimes small changes can make a world of difference.
It might be turning the music down.
Being patient if he communicates differently.
Understanding that he may need to move around.
Not judging if we need to leave early.
Or simply smiling instead of staring when he's having a hard moment.
Those things might seem small.
To families like ours, they're huge.
Some of the most meaningful moments we've had have been because someone chose understanding over judgement.
They didn't expect Max to change who he was.
They changed the environment just enough to help him feel like he belonged.
That's what true inclusion looks like.
Not making someone fit into your world.
Helping create a world where everyone has the chance to belong.
If you'd like to support my Brilliant Brunch fundraiser, every donation, big or small, helps create a more autism friendly Australia. Link to donate is below:
https://www.somethingbrilliant.org.au/.../a-brilliant-brunch
Raising awareness. Building understanding. One conversation at a time We celebrate differently
Before Max, I had a picture in my mind of what family celebrations would look like.
Birthday parties filled with friends.
Christmases spent visiting family.
Holidays where we could be spontaneous.
The reality looks a little different.
We often celebrate quietly.
We think about sensory overload before we think about decorations.
We choose smaller gatherings over big crowds.
Sometimes we leave early.
Sometimes we don't go at all.
And sometimes, we create our own traditions at home because that's where Max feels happiest.
There was a time when I grieved the celebrations I thought we'd have.
But over the years, I've realised something...
The memories we make don't have to look like everyone else's to be meaningful.
Some of my favourite moments have been the simplest ones.
Watching Max light up over something that brings him joy.
Seeing Olivia include her brother without hesitation.
Sharing a laugh together at home after plans didn't quite work out.
Our celebrations might not always look the way we imagined.
But they're ours.
And they're filled with just as much love.
I've learned that happiness isn't measured by how big the party is or how many people are there.
Sometimes it's found in the quiet moments that only your family will ever truly understand.
If you'd like to support my Brilliant Brunch fundraiser, every donation, big or small, helps create a more autism friendly Australia. Link to donate is below:
https://www.somethingbrilliant.org.au/.../a-brilliant-brunch
Raising awareness. Building understanding. One conversation at a time There's no cure for autism
One question I've been asked over the years is...
‘Will Max ever grow out of it?’
The simple answer is no.
Autism isn't an illness.
It isn't something that needs to be cured or fixed.
It's part of who Max is.
Would I love for life to be easier for him? Absolutely.
Would I love for him to be able to tell me when he's sick, hurt or scared? Without a doubt.
Would I love for the world to understand him a little better? Every single day.
But I don't want to change who he is.
I want to change the barriers that make life harder for him.
I want people to be patient when he communicates differently.
I want schools, workplaces and communities to be more inclusive.
I want families like ours to have access to the support they need without having to fight so hard for it.
Max doesn't need to become less autistic to belong in this world.
The world simply needs to become a place where autistic people are accepted, understood and supported for exactly who they are.
And I think that's something worth striving for, not just for Max, but for every autistic person.
If you'd like to support my Brilliant Brunch fundraiser, every donation, big or small, helps create a more autism friendly Australia. Link to donate is below:
https://www.somethingbrilliant.org.au/.../a-brilliant-brunch
Raising awareness. Building understanding. One conversation at a time Our Final Day at Coral Tree
As our time at Coral Tree comes to an end, I've been reflecting on everything we've learned over the past few days.
We arrived here not really knowing what to expect.
We knew we needed some extra help. We knew there were things we were struggling with. And we knew that despite everything we've learned over the years, sometimes you need someone from the outside to look at what's happening and help you see things a little differently.
And that's exactly what Coral Tree has given us.
We'll head home with new strategies.
New ideas.
A better understanding of some of Max's behaviours.
A little more confidence.
And probably just as many questions as when we arrived!
Because raising a child like Max isn't about finding one magical solution.
There isn't a strategy that's suddenly going to make all of the challenging behaviours disappear.
There isn't a handbook that tells us exactly what to do in every situation.
It's about constantly learning, adapting and growing alongside him.
Cameron and I are incredibly grateful that our family has had the opportunity to experience Coral Tree.
From the moment we arrived, the staff have been supportive, encouraging and, most importantly, understanding.
They've seen some of our really challenging moments.
They've seen Max escalate.
They've seen the difficulties around transitions.
They've seen the constant supervision and support he requires.
But they've also seen the beautiful side of Max.
His smile.
His cheekiness.
His ability to engage when everything around him feels right.
And his capacity to surprise us when we least expect it.
At no point have we felt judged.
Instead, we've been encouraged to look at things differently, try new approaches and think about what Max might be communicating through his behaviour.
We've been given advice and guidance that we can take home and put into practice in our everyday lives.
Will we get it right every time?
Absolutely not.
But I genuinely believe our family will be stronger because of what we've learned here.
And for that, Cameron and I are incredibly grateful.
We're grateful to every staff member who has taken the time to listen to us.
To encourage us.
To teach us.
To support our kids.
And sometimes simply remind us that we're doing okay.
There's something incredibly powerful about being surrounded by people who understand that you're not looking for someone to ‘fix’ your child.
You just want help understanding them.
If you're walking a similar path and you're feeling like your family could use a little extra help, I would absolutely encourage you to consider whether a stay at Coral Tree could be right for you.
Asking for help doesn't mean you've failed.
Sometimes another perspective, another strategy or simply having someone beside you saying, ‘Have you thought about trying it this way?’ can make an enormous difference.
Now comes the next part.
Taking everything we've learned and bringing it home.
The real work starts when we walk back through our own front door and try to put these strategies into practice in the real world.
I'm sure there'll be good days.
There'll definitely still be hard days.
There'll be things that work brilliantly and things we'll need to change along the way.
But we'll leave Coral Tree knowing we've added a few more tools to our toolbox.
We've learned a little more about Max.
We've learned a little more about ourselves.
And we've been reminded that we don't have to have all the answers to keep moving forward.
Sometimes a family doesn't need someone to give them all the answers.
Sometimes they just need the right people beside them to help them find their own.
To everyone at Coral Tree who has been part of our family's journey this week...
Thank you. We are leaving stronger because of you.
If you'd like to support my Brilliant Brunch fundraiser, every donation, big or small, helps create a more autism friendly Australia. Link to donate is below:
https://www.somethingbrilliant.org.au/.../a-brilliant-brunch
Raising awareness. Building understanding. One conversation at a time Sometimes Progress Is a Calm Day
Yesterday was our third day of our Coral Tree stay and it felt a little different.
We managed to make it through the entire day without any escalations from Max while he was with us.
He did have a few struggles while he was at school, but with the right support around him, the staff were able to help him work through those moments and move forward with his day.
And after the challenges we've had over the last few days, yesterday felt like a win.
Not a huge breakthrough.
Not some magical change.
Just a calmer day.
And sometimes, that's exactly what progress looks like.
This week has reminded me that progress isn't always measured by dramatic breakthroughs or suddenly overcoming something we've struggled with for years.
Sometimes it's found in the little moments.
A calmer transition.
A new strategy that works.
Getting through something that might normally have resulted in an escalation.
A smile.
A moment of connection.
Or simply being able to enjoy time together as a family without constantly waiting for things to unravel.
Being here has also given us something else that's incredibly valuable, the confidence that comes from knowing we're not facing this journey alone.
We're learning.
We're watching.
We're trying different approaches.
And we're beginning to see how even small changes in the way we respond or support Max can make a difference.
Does one calm day mean we've suddenly found all the answers?
Absolutely not.
Today could look completely different.
That's the reality of our life.
But yesterday was a good day.
And we're going to celebrate it for exactly what it was.
Because those moments might seem small to someone else.
But to families like ours, they're everything.
If you'd like to support my Brilliant Brunch fundraiser, every donation, big or small, helps create a more autism friendly Australia. Link to donate is below:
https://www.somethingbrilliant.org.au/.../a-brilliant-brunch
Raising awareness. Building understanding. One conversation at a time What Does Support Actually Look Like?
Being here hasn't suddenly made those behaviours disappear.
Max is still Max.
The challenges we experience at home have come with us.
But the difference is that we're surrounded by people who understand those challenges and can help us navigate them a little differently than we might have previously.
While we're here, both kids are still attending school and for Max, the transition to school was just as difficult as it normally is.
There were challenges.
There were behaviours.
There were moments where things could very easily have escalated.
But this time, we had the Coral Tree staff there to support us and Max through that transition.
They were able to help him move past those difficult moments and he managed to end his school day happy and on a positive note.
Then came something we don't always get after such a challenging start to the day...
A beautiful, calm afternoon.
Max was able to engage in some meaningful community and family games without escalating.
After the way our day had started, being able to sit back and watch him calmly participate was a pretty special little win.
And it got me thinking...
People often ask what support actually looks like.
It isn't always something big.
Sometimes it's someone noticing a trigger you hadn't seen.
Sometimes it's learning a different way to respond.
Sometimes it's having another person there who can see what's happening from a different perspective.
And sometimes it's making one small change that prevents a really hard moment from becoming an even harder one.
That's what we're learning here.
Support isn't about changing Max.
It's not about stopping him from being autistic or trying to make him behave like everyone else.
It's about helping us understand him better.
Because when we can understand why something is happening, we're much better equipped to work out what Max might be trying to communicate and how we can support him through it.
Yesterday's challenges didn't disappear.
But with the right people around us, we navigated them differently.
And by the end of the day, we got to see a happy Max, a calm Max and a Max who was able to participate and enjoy time with his family.
That's what the right support can do.
It doesn't necessarily remove the challenges.
Sometimes it simply gives a family better tools to navigate them.
And every family deserves access to that kind of support.
If you'd like to support my Brilliant Brunch fundraiser, every donation, big or small, helps create a more autism friendly Australia. Link to donate is below:
https://www.somethingbrilliant.org.au/.../a-brilliant-brunch
Raising awareness. Building understanding. One conversation at a time
Our First Day at Coral Tree
Well... Max certainly made sure the team at Coral Tree got to know him pretty quickly!
Our first day was full of challenges.
But in a strange way, I'm actually grateful for that.
Max doesn't know how to mask or hide his behaviours. What you see is what you get and from the very beginning, the staff here have been able to get a very real insight into what life can look like for Max and for us as a family.
They've seen the behaviours.
They've seen the challenges.
They've seen how quickly things can escalate.
They've seen the constant supervision that's required.
And they've seen just how much support Max needs to navigate his world.
There was no carefully presented version of our life.
This was us.
And one thing I've already been reminded of is just how valuable it is to be surrounded by people who simply get it.
There's something incredibly comforting about not having to explain every behaviour, every challenge or every safety concern.
No judgement.
No raised eyebrows.
No feeling like we have to justify why we do things the way we do.
Just understanding.
When you're raising a child with high support needs, you spend so much of your life explaining your world to other people.
Explaining why you can't just do something differently.
Explaining why something that seems simple isn't simple for your child.
Explaining behaviours.
Explaining safety risks.
Explaining why you're exhausted.
And sometimes even having to prove just how difficult things can be before you can access the support you need.
So being somewhere where we don't have to do any of that feels like a gift in itself.
Of course, I would have loved for Max to have had an easy first day.
But I'm also glad the team is getting to see our Max.
Not Max on his very best day.
Not Max described in a report.
Not Max reduced to words on a page.
The real Max.
Because the better they understand him, the better they can help us understand how to support him.
Sometimes the greatest support isn't someone coming along and fixing everything.
Sometimes it's simply having someone look at what you're living every day and say...
‘We see it. We understand.’
And that means more than I can explain.
If you'd like to support my Brilliant Brunch fundraiser, every donation, big or small, helps create a more autism friendly Australia. Link to donate is below:
https://www.somethingbrilliant.org.au/.../a-brilliant-brunch
Raising awareness. Building understanding. One conversation at a time We are always learning
Today we check in to Coral Tree Family Services.
For many people, packing a bag and heading away for a few days sounds like a holiday.
For families like ours, it's something completely different.
We're here to learn. To build strategies. To understand Max even better and to find new ways to support him.
It's a chance to step away from the everyday routines and work alongside professionals who understand the complexities of raising a child with significant support needs.
I don't know exactly what this week will bring, but I'm hopeful.
Because every new strategy, every small breakthrough and every new understanding has the potential to make life just that little bit easier, not just for Max, but for our whole family.
Sometimes asking for support isn't admitting defeat.
Sometimes it's the bravest thing you can do.
If you'd like to support my Brilliant Brunch fundraiser, every donation, big or small, helps create a more autism friendly Australia. Link to donate is below:
https://www.somethingbrilliant.org.au/.../a-brilliant-brunch
Raising awareness. Building understanding. One conversation at a time https://www.facebook.com/share/v/19SimUiopv/?mibextid=wwXIfr
Autism affects the whole family
When people think about autism, they usually think about the autistic person.
But autism doesn't just shape Max's life.
It shapes all of ours.
Our family doesn't make plans the way we used to. Every outing, every holiday, every family gathering starts with the same question...
‘Will this work for Max?’
Sometimes the answer is yes.
Sometimes it's no.
Sometimes we make it through the day with smiles and happy memories.
Other times we leave early because it's simply too much.
Olivia has grown up understanding that plans can change in an instant. She knows that sometimes we have to leave because Max needs us. She has learned patience, flexibility and compassion far beyond her years, not because she had to, but because it's the life she's always known.
Cameron and I have become a team in ways we never imagined. We divide and conquer. One of us might take Olivia to a birthday party while the other stays home with Max. We celebrate the little wins together and help each other through the hard days.
Autism has changed our family.
Not by taking away the love we have for each other.
But by teaching us that love sometimes looks different.
It looks like adapting.
It looks like advocating.
It looks like celebrating milestones that other people might never notice.
And most of all, it looks like showing up for each other, every single day.
If you'd like to support my Brilliant Brunch fundraiser, every donation, big or small, helps create a more autism friendly Australia. Link to donate is below:
https://www.somethingbrilliant.org.au/.../a-brilliant-brunch
Raising awareness. Building understanding. One conversation at a time Therapy isn't magic
People often ask how therapy is going.
The honest answer?
It depends on the day.
Some sessions are incredible.
Max engages, communicates in his own way and surprises us with what he's capable of.
Other days, we don't even make it through the door.
There have been times when therapy has felt impossible. When we've questioned whether we should keep trying because everything felt so hard.
Then there have been weeks where something just clicks.
A strategy works.
A new skill emerges.
A tiny breakthrough reminds us why we keep showing up.
What many people don't see is that therapy doesn't end when the appointment does.
The real work happens at home.
It's practising the strategies.
Repeating them over and over again.
Celebrating the smallest signs of progress.
And learning that sometimes the biggest breakthroughs come months after they were first introduced.
Therapy isn't about changing who Max is.
It's about giving him the tools to navigate a world that isn't always designed for him, while giving us the tools to better understand and support him.
There isn't a finish line.
There isn't a moment where we can say, ‘We're done.’
There is just the commitment to keep learning, keep trying and keep believing in what Max can achieve, one small step at a time.
If you'd like to support my Brilliant Brunch fundraiser, every donation, big or small, helps create a more autism friendly Australia. Link to donate is below:
https://www.somethingbrilliant.org.au/.../a-brilliant-brunch
Raising awareness. Building understanding. One conversation at a time Parents grieve too
When people think of grief, they usually think of losing someone they love.
But there is another kind of grief that doesn't get talked about enough.
It's the grief that comes with raising a child with additional needs.
It's grieving the life you once imagined.
The ‘normal’ childhood you thought they'd have.
The spontaneous play dates after school.
Birthday party invitations that fill the calendar.
Sleepovers.
Team sports.
Independence.
First jobs.
Moving out.
Falling in love.
Getting married.
Becoming a parent themselves.
It's not that you love your child any less. In fact, you love them so fiercely that you'd move mountains for them.
But sometimes your heart quietly mourns the experiences they may never have, or the ones that will look very different from what you once imagined.
Grief doesn't mean you aren't grateful. It doesn't mean you wish for a different child.
It simply means you're human.
You can celebrate every incredible milestone your child reaches while still grieving the ones they may never experience.
Both things can exist at the same time.
And if you're a parent carrying that quiet grief too, I want you to know you're not alone.
If you'd like to support my Brilliant Brunch fundraiser, every donation, big or small, helps create a more autism friendly Australia. Link to donate is below:
https://www.somethingbrilliant.org.au/.../a-brilliant-brunch
Raising awareness. Building understanding. One conversation at a time We don't stop advocating
If there's one thing I've learned since becoming Max's mum, it's that advocacy never stops.
You don't just explain your child's needs once.
You explain them over and over again.
To doctors.
To therapists.
To schools.
To support providers.
To government agencies.
And sometimes... you have to explain them to people who have never even met your child.
You fill out forms.
You gather reports.
You attend meetings.
You write emails.
You tell your story again and again, hoping this time someone will truly understand what life looks like behind closed doors.
Lately, that's meant preparing for the Administrative Review Tribunal.
I've spent countless hours reading reports, organising evidence, writing statements and reliving some of the hardest moments of our lives. Every suspension. Every failed support. Every safety concern. Every challenge we've faced has to be documented and laid out for strangers to read.
It's emotionally draining, because you're constantly asked to prove why your child needs help.
Recently, someone said to me, ‘Haven't they learnt not to go up against you yet?’
I laughed, but the truth is, I don't fight because I enjoy it.
I fight because I have to.
Because if I don't speak up for Max, who will?
One of the hardest parts is feeling like you have to prove just how difficult things are.
As a parent, every instinct tells you to celebrate your child's strengths and the progress they've made. But when you're applying for support, it can feel like you're expected to focus on everything they can't do.
That's heartbreaking.
Max is so much more than a list of diagnoses or behaviours. He's funny, affectionate, determined and has the most incredible smile.
But he also needs significant support and advocating for those supports isn't about asking for special treatment.
It's about giving him the opportunity to live the safest, fullest life possible.
So if you know a parent who always seems to be on the phone, writing emails, attending meetings, preparing for tribunals or fighting another battle behind the scenes, remember...
They're probably not looking for sympathy.
They're simply refusing to give up on their child.
If you'd like to support my Brilliant Brunch fundraiser, every donation, big or small, helps create a more autism friendly Australia. Link to donate is below:
https://www.somethingbrilliant.org.au/.../a-brilliant-brunch
Raising awareness. Building understanding. One conversation at a time Safety is always on our minds
Before Max, I never realised how much of parenting could revolve around keeping a child safe.
Of course, every parent worries. But when your child has no awareness of danger, that worry never really switches off.
Every outing starts with a plan.
Where are the exits?
Is there water nearby?
How busy is it?
Can he get out if he runs?
Will there be somewhere quiet if he becomes overwhelmed?
Even at home, doors are locked, routines are in place and we're always listening. Not because we want to limit his world, but because his curiosity is often much bigger than his understanding of danger.
People sometimes say, ‘You must be exhausted.’
The truth is... they're right.
Not because I don't love being Max's mum, but because being constantly alert takes its toll. There's no pause button. No moment where I can completely switch off.
But here's the thing.
I don't share this because I want sympathy.
I share it because I want understanding.
The next time you see a parent watching their child a little more closely, calling them back a little more often, pushing their older child in a pram or supermarket trolley or seeming unable to relax, remember, you don't know what they're carrying.
For our family, safety isn't something we think about occasionally.
It's something we think about every single day.
If you'd like to support my Brilliant Brunch fundraiser, every donation, big or small, helps create a more autism friendly Australia. Link to donate is below:
https://www.somethingbrilliant.org.au/.../a-brilliant-brunch
Raising awareness. Building understanding. One conversation at a time Progress looks different
One thing autism has taught me is to redefine what progress looks like.
Before Max, I probably would have measured progress by the big milestones.
Now, I celebrate the little ones.
Progress might be Max walking into therapy without becoming overwhelmed.
It might be him engaging for longer than he did last week.
It might be accepting a small change in his routine or simply getting through the day without everything feeling too much.
There have been times where it felt like we were standing still. Months where every day felt like we were taking one step forward and two steps back. There have been school terms filled with partial attendance, difficult behaviours and challenges that left us wondering if we were making any progress at all.
And then, out of nowhere, something changes.
He copes with something he couldn't before.
He communicates something in a new way.
He surprises us.
Those moments remind me that progress isn't always obvious while you're living it.
It's easy to compare our children to others, but I've learned that comparison steals the joy from celebrating our own journey.
Max isn't on anyone else's timeline.
He's on his own.
And every step forward, no matter how small it might seem to someone else, is worth celebrating.
If you'd like to support my Brilliant Brunch fundraiser, every donation, big or small, helps create a more autism friendly Australia. Link to donate is below:
https://www.somethingbrilliant.org.au/.../a-brilliant-brunch
Raising awareness. Building understanding. One conversation at a time Communication isn't just talking
Eight years ago, I shared a video on Facebook with the caption...
'Max said his first word today.'
At the time, I had no idea that our journey would look so different to the one I had imagined.
Max was reaching his milestones when he was supposed to. We celebrated his first word, just like any other parents would. Then, little by little, everything changed.
The words stopped coming.
The milestones stopped.
And before long, we found ourselves on a path I knew very little about.
Back then, I had little to no knowledge of autism, let alone what it meant for someone to be non verbal.
I never imagined I'd need to learn sign language to communicate with my son, or that one day his voice would come from an AAC device instead of his own.
But that's our reality.
Today, Max can say four words.
Just four.
Go. Come. Please. Bye
The rest of his communication is through a combination of limited sign language, his AAC device and, at times, his behaviours.
One of the biggest misconceptions about autism is that if someone can't talk, they must not understand.
Max is non verbal, but that doesn't mean he isn't listening.
He understands far more than most people realise.
He hears when people speak kindly to him and he hears when people talk about him as if he isn't there.
Just because he can't answer your questions doesn't mean he doesn't have thoughts, feelings, preferences or emotions.
Communication is so much more than spoken words.
Sometimes it's a look.
A smile.
Leading me by the hand.
Bringing me something he needs help with.
Sometimes it's a sign.
Sometimes it's pressing a button on his AAC device.
And sometimes it's behaviour. When Max is overwhelmed, frustrated or anxious, his behaviour is often his way of telling us something he simply can't put into words.
One of the greatest lessons Max has taught me is that communication isn't always about having a voice, it's about having someone willing to listen.
So if you ever meet someone who is non verbal, don't assume they don't understand.
Talk to them.
Include them in the conversation.
Acknowledge them.
Because every person deserves the dignity of being seen, heard and included, even if their voice sounds different to yours.
If you'd like to support my Brilliant Brunch fundraiser, every donation, big or small, helps create a more autism friendly Australia. Link to donate is below:
https://www.somethingbrilliant.org.au/.../a-brilliant-brunch
Raising awareness. Building understanding. One conversation at a time Photos don't tell the whole story
If you've followed our journey for a while, you've probably seen photos of Max smiling.
Maybe you've seen us out as a family, celebrating a birthday, enjoying a day out or simply sharing a happy moment.
But here's something to think about...
A photo captures a split second.
It doesn't show the planning that went into leaving the house. It doesn't show the anxiety of wondering if today will be a good day or whether we'll need to leave after five minutes. It doesn't show the meltdowns before we got there or the exhaustion once we got home.
It doesn't show the constant scanning for exits, making sure doors are locked, watching every movement because Max has no awareness of danger.
It doesn't show the times we've cancelled plans because we knew it would simply be too much for him.
Social media is often a highlight reel and ours is no different. I choose to share the happy moments because they're worth celebrating. We fight hard for those moments.
But behind every smiling photo is a family that's constantly adapting, planning, advocating and hoping.
So the next time you see a family smiling in a photo, remember, you never know what their journey looked like before or after that picture was taken.
Thank you for following ours.
If you'd like to support my Brilliant Brunch fundraiser, every donation, big or small, helps create a more autism friendly Australia. Link to donate is below:
https://www.somethingbrilliant.org.au/.../a-brilliant-brunch
Raising awareness. Building understanding. One conversation at a time Autism doesn't end when childhood does
When most people think about autism, they picture a young child.
But here's something to think about…
Autistic children grow up.
They become autistic teenagers, autistic adults and eventually autistic older adults. Autism doesn't disappear when childhood ends and neither does the need for understanding, acceptance and support.
As Max gets older, I often find myself wondering what his future will look like. Will he always need someone to keep him safe? Will he be able to communicate his needs? Will there be enough support available for him when we're no longer here?
They're questions no parent really wants to think about, but they're our reality.
That's one of the reasons I'm supporting Aspect's Brilliant Brunch this August. The work Aspect does doesn't just support children, it helps autistic people and their families throughout every stage of life.
Over the next 31 days, I'd love for you to join me for a daily Food for Thought as I share a little more about our family's journey with autism. Some posts might challenge what you thought you knew. Some might make you smile and others might be hard to read. But every one of them will come straight from our lived experience.
If sharing our story helps even one more person understand autism a little better, then it's worth it.
If you'd like to support my Brilliant Brunch fundraiser, every donation, big or small, helps create a more autism friendly Australia. Link to donate is below:
https://www.somethingbrilliant.org.au/.../a-brilliant-brunch
Raising awareness. Building understanding. One conversation at a time I'm taking part in Aspect's Brilliant Brunch fundraiser... but in my own way.
Many of you know that one of the reasons I started Raising Max. was to help people better understand autism through our family's journey.
This August, I'm proud to be supporting Aspect's Brilliant Brunch fundraising campaign. While I won't be hosting a brunch myself, I'll be doing what I know best, sharing our life with Max.
Throughout August, I'll be posting a series called ‘Food for Thought.’ Each day I'll share a little piece of our world; the challenges, the victories, the lessons we've learned and the moments that have shaped us as a family.
My hope is that these posts will help create a little more understanding, a little more acceptance and a little more kindness towards autistic people and their families.
If you've ever read one of my posts and learned something new, laughed with us, cried with us or simply felt a little more connected to our journey, I'd love for you to consider supporting this fundraiser.
Every donation, no matter the size, helps Aspect continue providing vital support and opportunities for autistic people and their families, helping to create a more autism friendly Australia where everyone has the chance to participate, belong and thrive.
Thank you for continuing to follow our journey, to cheer Max on and to help spread awareness alongside us.
My Achievements
Updated profile picture
Made a self donation
Updated copy
Shared page on social media
Received first donation
25% to fundraising goal
50% to fundraising goal
75% to fundraising goal
Achieved fundraising goal
Thank you to my Sponsors
$100
Raffle Tickets - Chris
$80
Raffle Tickets - Stacey And Matt
$55.95
Ley Rowe
Never forget you are awesome and doing an amazing job. Thanks for sharing the journey.
$55.95
Katrina Stair
$50
Raffle Tickets - Megs
$50
Raffle Tickets - Bill And Dale
$50
Raffle Tickets - Rachel
$50
Raffle Tickets - Traci
$34.40
Anonymous
$25
Kelly Lindsay
$20
Raffle Tickets - Stella
$20
Raffle Tickets - Lyn
$20
Raffle Tickets - Russell
$20
Raffle Tickets - Cherie
$20
Raffle Tickets - Mark
$20
Raffle Tickets - Sue
$10
Raffle Tickets - Sally
$10
Raffle Tickets - Melissa
$10
Raffle Tickets - Paula
$6.20
Roch
$5
Raffle Tickets - Shelley
$5
Melissa Lloyd
$5
