June 18, 2024 • 19 mins
In this episode, I'm thrilled to talk with Melissa, a local author with an international reach, a captivating storyteller, mother, and strong health and youth advocate. We'll be discussing the launch of her latest book, her inspiration, and the importance of fostering an inclusive and welcoming community for our young people.
Melissa's book, "Chloe and Tom," explores the sibling relationship in the context of Fragile X Syndrome, a genetic condition not widely known. Through her personal experiences, Melissa shares the journey of raising a child with special needs and the positive impact it has had on their family. We'll also talk about the therapies and support systems that have helped her son, Tom, thrive.
Join us as we uncover Melissa's inspiring story, the challenges and triumphs of living with Fragile X Syndrome, and the enduring bond between siblings. We'll also discuss the broader community's role in supporting families like Melissa's and the importance of awareness and inclusion.
Don't miss this heartwarming episode filled with love, perseverance, and community spirit. Subscribe to the Pease Podcast and stay tuned for more stories of the extraordinary individuals who make Lytton the vibrant place it is today.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:00):
Welcome back to the Pease Podcast, the show where we delve into the captivating
world of Lytton's local legends.
I'm your host, Joan Pease, and I proudly serve as your state member for Lytton.
In this podcast, we celebrate the rich tapestry of our community by highlighting
the extraordinary stories and individuals and businesses who make Lytton a truly
(00:20):
special place to call home.
From historic figures to contemporary heroes, we'll explore the diverse talents
and remarkable achievements that have shaped Lytton's identity.
Each episode, we uncover the untold tales and remarkable contributions of those
who have made a really positive impact to our Bayside.
(00:40):
And in today's episode, I'm really thrilled to have a fascinating and very beautiful
human being, Melissa Mickelson.
Melissa is a local author with an international reach.
She is a captivating storyteller, a mother, and a strong health and youth advocate.
I'll be talking with Melissa today about the launch of her latest book,
(01:03):
her inspiration, and the importance of fostering an inclusive and welcoming
community for our young people.
We'll also be talking about Fragile X, which is a syndrome that not many people know much about.
And I'd like you to sit back, relax, Relax and join us while we embark on this
exciting adventure of celebrating Lytton's local legends.
(01:25):
Let's dive deep into history, inspiration and the stories that unite us as a
community. Welcome to the Peace Podcast.
Music.
(01:53):
Thank you so much for coming in today. Thank you for inviting me.
I'm so happy to be here. Oh, it's great to have you. And congratulations.
Chloe and Tom is a great story. Thank you.
And it says a lot about family and perseverance and the love of siblings.
So would you like to tell us a little bit about how you came to write the book firstly?
Well, it was a marriage of love and frustration that took me to write this book.
(02:19):
Love for my children and my family, and also the frustration that there was
nothing out there that explained what it's like to have a sibling with special needs.
And that relationship between siblings and a positive relationship between siblings
as well. So that's what drove me to write the book.
Chloe and Tom were the reason that I wrote the book.
(02:41):
And yeah, I actually asked them when I'd finished the book, do you want me to
leave your names as Chloe and Tom in the book, or should I change it?
And they, no, this is our story. Leave our names. They're our names.
Leave it. That's fantastic.
How old were they when you wrote the book, firstly? Oh, probably started playing
with the book about 20 years ago.
(03:04):
But, yeah, I only, I sort of gathered sort of the gumption, I guess,
to put it all together and, yeah, started the process last year of putting it together as a book.
And working on illustrations with another company and sort of putting it all
together as a book that really illustrated who Chloe and Tom actually are.
(03:26):
It's a lovely story.
Thank you. And so Chloe and Tom, this is a story about siblings and Fragile X.
So can you tell us a little bit about what Fragile X is?
Sure, sure. Fragile X syndrome is a genetic condition.
So it's a condition that
for Tom we tell him it makes things a
(03:46):
little bit tricky for him so for Tom it's intellectual
impairment and global developmental delay
so the X chromosome for Tom is a little bit broken and that's why it's called
fragile X because the X chromosome is fragile I wondered where the name came
yes when all the research that I was doing I couldn't understand why it came
(04:08):
to that. So that's interesting.
And how does it, what sort of therapy and help have you had for Tom over the years?
We've, we started really young when he was six months old.
I noticed he, he was really a bit floppy in his chair and he wouldn't hold his
bottle and all of that sort of thing.
So we actually went down to the Wynnum Health nurse and I said, oh,
(04:31):
I don't know, there's something here's different and they said yeah maybe go
down to see a physio or an occupational therapist or something we did that and
it took another three years to get a diagnosis and that was genetic,
So the way he was diagnosed was through a blood test and that was a genetic blood test.
(04:54):
Sorry. Is that me? Sorry.
And the genetic blood test showed that he had fragile X syndrome.
So we went, okay, what does this mean?
And I looked at some different information and it seemed quite bleak.
And I thought, oh no, this is terrible. And then I looked at Tom and he's there
(05:16):
smiling and happy and playing blocks with his sister. And I thought, it's not that bad.
And that's why there's actually a picture in the book of them playing blocks together as well.
It's a lovely book. And what's so lovely is that you told a story about some
of the therapies and with Chloe, would you like to share that story?
(05:38):
Oh, yeah, yeah, yeah, absolutely.
When she was younger, she used to come to therapy sessions with Tom.
And Chloe, we used to call them, I get like Bluey sort of changes names to be a bit cute.
So we'd go, oh, we're going to the playing lady and they'd go and do different things.
And the talking lady was a speech therapist. The playing lady was a physiotherapist.
(05:59):
And she said to me, she was in year 10 and she said, mom, remember that playing
lady we used to go and see?
And I said, yeah. She said, is that, is that like a real job?
And I said, honey, that's a pediatric physiotherapist. And she said, but I went too.
I said, yeah, you went to show your brother how to do things and then he would
(06:19):
copy you. And she went, oh.
And now she's a pediatric therapist, a physiotherapist, yeah.
What an amazing young woman. You must be very proud of both of your kids.
I'm pretty proud of them, yeah.
And so they're still close? They're very close, yeah.
They still make time to go out with each other, so they'll go to the movies
together sometimes. times.
Or even just down into Wynnum, there's the little Lego cafe that they've gone to a few times.
(06:44):
Yeah, they've gone all over the place, mostly around Wynnum.
Yes. Lots to see in Wynnum. It's a good place to see. Well, you don't need to
leave the area. There's everything available here. You don't. No.
And Tom still lives at home with you? Yes, he does. Yeah. And how does he manage?
Does he get around? Is he? Yeah, he goes to Blue Tongue. Oh, lovely.
That's great. So yeah, he goes to the Blue Tongue out on Tingle Road and he's
(07:07):
involved in a lot of their different programs like,
you know, Puddock to Plate and also doing a little bit of woodwork and furniture
sort of restoration and painting and clay work and all of that sort of thing.
So he loves it. Oh, fantastic.
Now just back to fragile legs, what are the symptoms of the syndrome?
For Tom, it was low muscle tone. and then as he got older, his communication wasn't coming.
(07:33):
He wasn't talking as his sister was talking.
They weren't talking at the same age. They were growing at different rates and I thought, well...
Okay, you know, he's not talking, he's not sitting up, he's not walking,
he wasn't crawling properly.
And all of those little things were symptoms for us to go, hey,
(07:53):
there's something going on here.
And the pediatrician had a brochure sent out from the Fragile Association because
they did a big mail out to all the doctors in Australia.
And he said, oh, I might test for this because maybe, I don't know.
And yeah, that was the one thing that came back positive with genetic testing.
Yeah. And are there much instances of Fragile X that you know of?
(08:17):
Yeah, I know quite a few in Brisbane.
Yeah. I know quite a few. I know globally, yes, there are quite a few instances of Fragile X.
It's not, probably not as diagnosed as it could be from what I've read, but yeah.
Do they have support groups or anything like that? Yeah, they do.
There's a support group.
They're based in Sydney for Australia and they've got like a free counsellor
(08:40):
to talk to and, yeah, it's worth, they're the Fragile X Association of Australia.
And, in fact, proceeds from this book when it's being sold at the Little Gnome
will be going to, some of it will be going to the Fragile X Association of Australia
as well. That's fantastic.
So you're going to republish and sell it at the Little Gnome? Yes, yeah.
(09:01):
Oh, that's fantastic. Well, that's great. A nice public, you know,
a self-published book going and selling it through Little Gnome.
It's really great. I think Melbourne will be really supportive of that. I'm sure, yeah.
And it's been selling internationally through Barnes & Noble and Walmart as
well online. Yeah. Fantastic.
Is there much, are you aware of the condition overseas, internationally?
(09:26):
Yes, yes. They have an international Fragile X, what is it called,
conference, and they have that usually in America somewhere.
I think it's every second year, something like that. I'm not quite sure.
But they do have it regularly and they get together. And I know that they have
a lot of walks in Washington, D.C. to support Fragile X Syndrome as well.
(09:48):
So people that live with Fragile X, they live a full life? They have a full
life expectancy? Yeah, absolutely.
I think just exposure to new experiences and teaching sort of how,
you know, different things work in society, like this is how we go and buy a
donut at Donut King at Wynnum Plaza. This is...
(10:12):
You know, food is always a great motivator, isn't it? And a donut, great thing.
There's always something sweet at the end.
Yeah, so food is always a good motivator. So teaching how to buy food and how
to communicate that that's what you'd like.
That's, you know, that's been what we've been doing with Tom.
And, you know, he's, everyone knows Tom.
(10:36):
And he gets out and about on his own. Is he independent? independent or?
No, usually he's out with a support worker or he's with us.
He can walk over to the neighbor's house and that sort of thing because they
know him, they've known him forever.
But yeah, and he's confident enough to go and do that. So yeah.
And you grew up in Wynnum yourself or did you move to the area?
Yeah, we moved to the area. Yeah.
(10:56):
I actually went to Redlands College at Wellington Point for high school.
And before that I'm from Sydney. So yeah.
And you found the beautiful Bayside. Love it here.
It's a beautiful part of the world, isn't it? Oh yeah, absolutely.
And so did the kids go to school in Winnemere? Yeah, yeah, Tom did.
He went to Darling Point and Chloe went to Redlands College as well.
(11:18):
So on the train line. Yeah, yeah.
Oh that's good and so they're still good mates?
Best of friends. I mean they still, Tom sends his sister you know fun sort of
gifts and things like that you know like a high you know that sort of of thing
all the time and Chloe always sends him one back high.
And are you writing more books? I'm hoping to, yeah. I'm hoping to. I've got a few ideas.
(11:42):
Yeah, I'm hoping to, like in the book, you can actually see there's a picture
of, it's meant to be Mount Coot-tha actually in one of the pages.
Right, let me find it. There we go, there's Mount Coot-tha. Yes,
I knew that one. Yeah. That's it there.
So yeah, that's meant to be Mount Coot-tha. But yeah, lots of little nuggets
It's in the book about Fragile X Syndrome.
(12:03):
If like with the food, there's a picture of Tom with his friends eating some
food and all the food is white textured food, white food with like a sort of carby sort of texture.
That's because that was Tom's favorite food. So yeah, anything else that wasn't
that at one point, he wouldn't go for it.
And was that just because of the condition or was that? Yeah,
(12:24):
I think it was just a texture and sensory sort of feel.
When he ate different foods, he sort of went, oh, you know, I prefer.
And how is he now? He eats an array of foods now, except if it's salad,
he doesn't. He's not a fan. I guess you don't make friends with salad, do you?
How old is he now? He's 21. Oh, wow.
(12:46):
Yeah. Yeah. Yes. And he keeps well otherwise?
Yeah, he does. He does. He's pretty good. He loves being social.
He's often going for walks up and down the Esplanade with somebody,
with a support worker or somebody from our family. So yeah.
So how long did it take you to write the book? I started 20 years ago. Yeah.
(13:09):
So I hope to have the next one in another 20 years.
No, no, no. No, when you did this one, you got it out and about.
Yeah, I got it out and about within about, I think I started in September and
it was out by, I think, March or April.
That's great. Yeah. And have the sales been going well for you?
(13:29):
They've been going, yeah, they've been going okay. I mean, you know,
it's a pretty big thing to have a book come out with a sibling relationship
with the special needs as well.
I just don't know really of anything too much out there that has that sibling
relationship and sort of talks about that positive nature of having a sibling with special needs.
Well, that's right. It's a remarkable relationship because siblings,
(13:54):
that whole sense of family is so important.
And coming with a loving mum and dad as well, how can they be anything other
than loving and kind and supportive?
And we're all one part of one family. So it's a delightful story.
And then for Chloe to go on and decide to do paediatric physiotherapy, that's tremendous.
(14:15):
Yeah, it is. And she absolutely loves her job. She really does.
She said, you know, she gets so much joy out of helping other kids and involving the siblings as well.
Where she can, she tries to involve them because that's what she knows.
Yeah. And that's so lovely that you're in a position that you could take Chloe
along for Tom, would have made him feel more comfortable and knowing that his
(14:40):
sister was there to support him. That's a beautiful journey.
And for her to think that it was just, she didn't even realise it wasn't for her.
That's so lovely. But you've got a very great sense of humour.
Thank you. You're always desperate to laugh.
It's so lovely to see you laughing. and it's a beautiful story.
Thank you so much. And did you enjoy and how did you, well, not enjoy,
(15:01):
well, maybe you did getting out to going to all the different therapies.
I mean, was it hard to find a therapist? Did you have to move around to find
someone that was suitable?
I'm not going to tell you any, Phoebe. It was easy because at the time we went
to the Wynnum Health nurse and then we went down and there was the Wynnum Hospital
had therapists there for children.
(15:22):
And so we went to a speechy, a physio, and then later on an OT as well.
Oh, gee, you were lucky. I was so lucky at the time. Yeah.
I was so lucky. And then we went over to, when he got older,
we went to Amanda Hartman, who's awesome.
She's a speechy in Manly West, I think. So yeah, she was amazing.
(15:42):
And she, I think everywhere we went,
we were really lucky because we found playful therapists it
wasn't you know like a
homework sheet photocopied it was play yeah
and joy and that was and seeing the
joy for chloe and tom was actually really lovely every time they
went even though chloe didn't know it was not for her thought it was just a
(16:05):
play group yeah pretty much so do you still attend the speech therapist and
we haven't late we We haven't because he's grown up now and we pretty much understand
what he means and he generally gets his message across, you know.
Did he attend an occupational therapist?
He did as well, yeah, he did. He did.
(16:27):
It was more about, like, how to hold a pencil and that sort of stuff.
And here he is now making furniture and getting it. That's great. Yeah.
Blue Tongue is wonderful. Blue Tongue is fantastic. And they've got such a lovely way about them.
I've been down to their room down there. It's beautiful. And they do great work.
It's a really good organisation. I know. Tom's told me.
(16:49):
Did he see me? Yeah. He said, I saw Joan Pease. I think he was starstruck.
I'll have to come in and see me in here, have a look around the office one day. Yeah, definitely.
Yeah, always happy to do that. And Chloe lives nearby? Oh, she's over at Orkinflower.
Oh, not too far. But she still finds herself in Wynnum most of the weekends.
(17:10):
I don't think she can keep away.
Well, you're a lovely mum. I don't blame her. Thank you. You're very beautiful.
Great to be with you. You have such a good vibe about you. Thank you.
Thank you so much for coming in. I really appreciate that and sharing that.
It's a really lovely story. So if anyone does want to purchase it,
it's going to be available from the little known fairly soon.
Yeah, yeah. And we're going to do a book signing on the 6th of June,
(17:33):
I think it is. Oh, great. Yeah, and Tom will be there too.
Oh, very good. Well, that'll be nice. We'll have to make sure I pop over and
have a look. Can I ask you, how did you do the illustrations?
Did you find someone to do it for you? I did some digitally myself.
How? And then I took them to Amazon and I said, hey, can you zhuzh these up
and keep going with the illustrations? This is what I want. And then we worked together. Yeah.
(17:57):
That's fantastic. It was really good. Yeah.
I'm very impressed. Thank you. It's amazing. So all these things that you see
on TikTok things, they actually, you can actually do them like,
you know, the self-publishing of things.
Well done. Thank you. Well, thank you so much, Melissa, for coming in. I really appreciate it.
So thank you for joining us on this captivating journey through Lytton's Local
(18:18):
Legends. I hope that you've enjoyed this wonderful conversation with Melissa
and enjoyed spending time listening to her as much as I have.
I can't stop smiling. She's such a beautiful, smiling human being.
If you love this episode, make sure to subscribe to the Peace Podcast so you
never miss an opportunity to discover more stories of the extraordinary individuals
(18:39):
just like Melissa and Tom and Chloe and Paul,
and who have made Lytton the vibrant place that it is today.
We'd love to hear your feedback and suggestions for
future episodes so please feel free to reach out
to us on social media or through my website and
remember it's your engagement that keeps this podcast alive and thriving join
(18:59):
us again next time as we continue our mission of celebrating the unsung heroes
just like melissa thank you that make lytton a truly special place to call home
Until then, stay curious,
stay inspired and keep celebrating the legends in our Bayside.
This is Joan Pease, your host, signing off.
(19:21):
Music.
Welcome back to the Pease Podcast, the show where we delve into the captivating
world of Lytton's local legends.
I'm your host, Joan Pease, and I proudly serve as your state member for Lytton.
In this podcast, we celebrate the rich tapestry of our community by highlighting
the extraordinary stories and individuals and businesses who make Lytton a truly
(00:20):
special place to call home.
From historic figures to contemporary heroes, we'll explore the diverse talents
and remarkable achievements that have shaped Lytton's identity.
Each episode, we uncover the untold tales and remarkable contributions of those
who have made a really positive impact to our Bayside.
(00:40):
And in today's episode, I'm really thrilled to have a fascinating and very beautiful
human being, Melissa Mickelson.
Melissa is a local author with an international reach.
She is a captivating storyteller, a mother, and a strong health and youth advocate.
I'll be talking with Melissa today about the launch of her latest book,
(01:03):
her inspiration, and the importance of fostering an inclusive and welcoming
community for our young people.
We'll also be talking about Fragile X, which is a syndrome that not many people know much about.
And I'd like you to sit back, relax, Relax and join us while we embark on this
exciting adventure of celebrating Lytton's local legends.
(01:25):
Let's dive deep into history, inspiration and the stories that unite us as a
community. Welcome to the Peace Podcast.
Music.
(01:53):
Thank you so much for coming in today. Thank you for inviting me.
I'm so happy to be here. Oh, it's great to have you. And congratulations.
Chloe and Tom is a great story. Thank you.
And it says a lot about family and perseverance and the love of siblings.
So would you like to tell us a little bit about how you came to write the book firstly?
Well, it was a marriage of love and frustration that took me to write this book.
(02:19):
Love for my children and my family, and also the frustration that there was
nothing out there that explained what it's like to have a sibling with special needs.
And that relationship between siblings and a positive relationship between siblings
as well. So that's what drove me to write the book.
Chloe and Tom were the reason that I wrote the book.
(02:41):
And yeah, I actually asked them when I'd finished the book, do you want me to
leave your names as Chloe and Tom in the book, or should I change it?
And they, no, this is our story. Leave our names. They're our names.
Leave it. That's fantastic.
How old were they when you wrote the book, firstly? Oh, probably started playing
with the book about 20 years ago.
(03:04):
But, yeah, I only, I sort of gathered sort of the gumption, I guess,
to put it all together and, yeah, started the process last year of putting it together as a book.
And working on illustrations with another company and sort of putting it all
together as a book that really illustrated who Chloe and Tom actually are.
(03:26):
It's a lovely story.
Thank you. And so Chloe and Tom, this is a story about siblings and Fragile X.
So can you tell us a little bit about what Fragile X is?
Sure, sure. Fragile X syndrome is a genetic condition.
So it's a condition that
for Tom we tell him it makes things a
(03:46):
little bit tricky for him so for Tom it's intellectual
impairment and global developmental delay
so the X chromosome for Tom is a little bit broken and that's why it's called
fragile X because the X chromosome is fragile I wondered where the name came
yes when all the research that I was doing I couldn't understand why it came
(04:08):
to that. So that's interesting.
And how does it, what sort of therapy and help have you had for Tom over the years?
We've, we started really young when he was six months old.
I noticed he, he was really a bit floppy in his chair and he wouldn't hold his
bottle and all of that sort of thing.
So we actually went down to the Wynnum Health nurse and I said, oh,
(04:31):
I don't know, there's something here's different and they said yeah maybe go
down to see a physio or an occupational therapist or something we did that and
it took another three years to get a diagnosis and that was genetic,
So the way he was diagnosed was through a blood test and that was a genetic blood test.
(04:54):
Sorry. Is that me? Sorry.
And the genetic blood test showed that he had fragile X syndrome.
So we went, okay, what does this mean?
And I looked at some different information and it seemed quite bleak.
And I thought, oh no, this is terrible. And then I looked at Tom and he's there
(05:16):
smiling and happy and playing blocks with his sister. And I thought, it's not that bad.
And that's why there's actually a picture in the book of them playing blocks together as well.
It's a lovely book. And what's so lovely is that you told a story about some
of the therapies and with Chloe, would you like to share that story?
(05:38):
Oh, yeah, yeah, yeah, absolutely.
When she was younger, she used to come to therapy sessions with Tom.
And Chloe, we used to call them, I get like Bluey sort of changes names to be a bit cute.
So we'd go, oh, we're going to the playing lady and they'd go and do different things.
And the talking lady was a speech therapist. The playing lady was a physiotherapist.
(05:59):
And she said to me, she was in year 10 and she said, mom, remember that playing
lady we used to go and see?
And I said, yeah. She said, is that, is that like a real job?
And I said, honey, that's a pediatric physiotherapist. And she said, but I went too.
I said, yeah, you went to show your brother how to do things and then he would
(06:19):
copy you. And she went, oh.
And now she's a pediatric therapist, a physiotherapist, yeah.
What an amazing young woman. You must be very proud of both of your kids.
I'm pretty proud of them, yeah.
And so they're still close? They're very close, yeah.
They still make time to go out with each other, so they'll go to the movies
together sometimes. times.
Or even just down into Wynnum, there's the little Lego cafe that they've gone to a few times.
(06:44):
Yeah, they've gone all over the place, mostly around Wynnum.
Yes. Lots to see in Wynnum. It's a good place to see. Well, you don't need to
leave the area. There's everything available here. You don't. No.
And Tom still lives at home with you? Yes, he does. Yeah. And how does he manage?
Does he get around? Is he? Yeah, he goes to Blue Tongue. Oh, lovely.
That's great. So yeah, he goes to the Blue Tongue out on Tingle Road and he's
(07:07):
involved in a lot of their different programs like,
you know, Puddock to Plate and also doing a little bit of woodwork and furniture
sort of restoration and painting and clay work and all of that sort of thing.
So he loves it. Oh, fantastic.
Now just back to fragile legs, what are the symptoms of the syndrome?
For Tom, it was low muscle tone. and then as he got older, his communication wasn't coming.
(07:33):
He wasn't talking as his sister was talking.
They weren't talking at the same age. They were growing at different rates and I thought, well...
Okay, you know, he's not talking, he's not sitting up, he's not walking,
he wasn't crawling properly.
And all of those little things were symptoms for us to go, hey,
(07:53):
there's something going on here.
And the pediatrician had a brochure sent out from the Fragile Association because
they did a big mail out to all the doctors in Australia.
And he said, oh, I might test for this because maybe, I don't know.
And yeah, that was the one thing that came back positive with genetic testing.
Yeah. And are there much instances of Fragile X that you know of?
(08:17):
Yeah, I know quite a few in Brisbane.
Yeah. I know quite a few. I know globally, yes, there are quite a few instances of Fragile X.
It's not, probably not as diagnosed as it could be from what I've read, but yeah.
Do they have support groups or anything like that? Yeah, they do.
There's a support group.
They're based in Sydney for Australia and they've got like a free counsellor
(08:40):
to talk to and, yeah, it's worth, they're the Fragile X Association of Australia.
And, in fact, proceeds from this book when it's being sold at the Little Gnome
will be going to, some of it will be going to the Fragile X Association of Australia
as well. That's fantastic.
So you're going to republish and sell it at the Little Gnome? Yes, yeah.
(09:01):
Oh, that's fantastic. Well, that's great. A nice public, you know,
a self-published book going and selling it through Little Gnome.
It's really great. I think Melbourne will be really supportive of that. I'm sure, yeah.
And it's been selling internationally through Barnes & Noble and Walmart as
well online. Yeah. Fantastic.
Is there much, are you aware of the condition overseas, internationally?
(09:26):
Yes, yes. They have an international Fragile X, what is it called,
conference, and they have that usually in America somewhere.
I think it's every second year, something like that. I'm not quite sure.
But they do have it regularly and they get together. And I know that they have
a lot of walks in Washington, D.C. to support Fragile X Syndrome as well.
(09:48):
So people that live with Fragile X, they live a full life? They have a full
life expectancy? Yeah, absolutely.
I think just exposure to new experiences and teaching sort of how,
you know, different things work in society, like this is how we go and buy a
donut at Donut King at Wynnum Plaza. This is...
(10:12):
You know, food is always a great motivator, isn't it? And a donut, great thing.
There's always something sweet at the end.
Yeah, so food is always a good motivator. So teaching how to buy food and how
to communicate that that's what you'd like.
That's, you know, that's been what we've been doing with Tom.
And, you know, he's, everyone knows Tom.
(10:36):
And he gets out and about on his own. Is he independent? independent or?
No, usually he's out with a support worker or he's with us.
He can walk over to the neighbor's house and that sort of thing because they
know him, they've known him forever.
But yeah, and he's confident enough to go and do that. So yeah.
And you grew up in Wynnum yourself or did you move to the area?
Yeah, we moved to the area. Yeah.
(10:56):
I actually went to Redlands College at Wellington Point for high school.
And before that I'm from Sydney. So yeah.
And you found the beautiful Bayside. Love it here.
It's a beautiful part of the world, isn't it? Oh yeah, absolutely.
And so did the kids go to school in Winnemere? Yeah, yeah, Tom did.
He went to Darling Point and Chloe went to Redlands College as well.
(11:18):
So on the train line. Yeah, yeah.
Oh that's good and so they're still good mates?
Best of friends. I mean they still, Tom sends his sister you know fun sort of
gifts and things like that you know like a high you know that sort of of thing
all the time and Chloe always sends him one back high.
And are you writing more books? I'm hoping to, yeah. I'm hoping to. I've got a few ideas.
(11:42):
Yeah, I'm hoping to, like in the book, you can actually see there's a picture
of, it's meant to be Mount Coot-tha actually in one of the pages.
Right, let me find it. There we go, there's Mount Coot-tha. Yes,
I knew that one. Yeah. That's it there.
So yeah, that's meant to be Mount Coot-tha. But yeah, lots of little nuggets
It's in the book about Fragile X Syndrome.
(12:03):
If like with the food, there's a picture of Tom with his friends eating some
food and all the food is white textured food, white food with like a sort of carby sort of texture.
That's because that was Tom's favorite food. So yeah, anything else that wasn't
that at one point, he wouldn't go for it.
And was that just because of the condition or was that? Yeah,
(12:24):
I think it was just a texture and sensory sort of feel.
When he ate different foods, he sort of went, oh, you know, I prefer.
And how is he now? He eats an array of foods now, except if it's salad,
he doesn't. He's not a fan. I guess you don't make friends with salad, do you?
How old is he now? He's 21. Oh, wow.
(12:46):
Yeah. Yeah. Yes. And he keeps well otherwise?
Yeah, he does. He does. He's pretty good. He loves being social.
He's often going for walks up and down the Esplanade with somebody,
with a support worker or somebody from our family. So yeah.
So how long did it take you to write the book? I started 20 years ago. Yeah.
(13:09):
So I hope to have the next one in another 20 years.
No, no, no. No, when you did this one, you got it out and about.
Yeah, I got it out and about within about, I think I started in September and
it was out by, I think, March or April.
That's great. Yeah. And have the sales been going well for you?
(13:29):
They've been going, yeah, they've been going okay. I mean, you know,
it's a pretty big thing to have a book come out with a sibling relationship
with the special needs as well.
I just don't know really of anything too much out there that has that sibling
relationship and sort of talks about that positive nature of having a sibling with special needs.
Well, that's right. It's a remarkable relationship because siblings,
(13:54):
that whole sense of family is so important.
And coming with a loving mum and dad as well, how can they be anything other
than loving and kind and supportive?
And we're all one part of one family. So it's a delightful story.
And then for Chloe to go on and decide to do paediatric physiotherapy, that's tremendous.
(14:15):
Yeah, it is. And she absolutely loves her job. She really does.
She said, you know, she gets so much joy out of helping other kids and involving the siblings as well.
Where she can, she tries to involve them because that's what she knows.
Yeah. And that's so lovely that you're in a position that you could take Chloe
along for Tom, would have made him feel more comfortable and knowing that his
(14:40):
sister was there to support him. That's a beautiful journey.
And for her to think that it was just, she didn't even realise it wasn't for her.
That's so lovely. But you've got a very great sense of humour.
Thank you. You're always desperate to laugh.
It's so lovely to see you laughing. and it's a beautiful story.
Thank you so much. And did you enjoy and how did you, well, not enjoy,
(15:01):
well, maybe you did getting out to going to all the different therapies.
I mean, was it hard to find a therapist? Did you have to move around to find
someone that was suitable?
I'm not going to tell you any, Phoebe. It was easy because at the time we went
to the Wynnum Health nurse and then we went down and there was the Wynnum Hospital
had therapists there for children.
(15:22):
And so we went to a speechy, a physio, and then later on an OT as well.
Oh, gee, you were lucky. I was so lucky at the time. Yeah.
I was so lucky. And then we went over to, when he got older,
we went to Amanda Hartman, who's awesome.
She's a speechy in Manly West, I think. So yeah, she was amazing.
(15:42):
And she, I think everywhere we went,
we were really lucky because we found playful therapists it
wasn't you know like a
homework sheet photocopied it was play yeah
and joy and that was and seeing the
joy for chloe and tom was actually really lovely every time they
went even though chloe didn't know it was not for her thought it was just a
(16:05):
play group yeah pretty much so do you still attend the speech therapist and
we haven't late we We haven't because he's grown up now and we pretty much understand
what he means and he generally gets his message across, you know.
Did he attend an occupational therapist?
He did as well, yeah, he did. He did.
(16:27):
It was more about, like, how to hold a pencil and that sort of stuff.
And here he is now making furniture and getting it. That's great. Yeah.
Blue Tongue is wonderful. Blue Tongue is fantastic. And they've got such a lovely way about them.
I've been down to their room down there. It's beautiful. And they do great work.
It's a really good organisation. I know. Tom's told me.
(16:49):
Did he see me? Yeah. He said, I saw Joan Pease. I think he was starstruck.
I'll have to come in and see me in here, have a look around the office one day. Yeah, definitely.
Yeah, always happy to do that. And Chloe lives nearby? Oh, she's over at Orkinflower.
Oh, not too far. But she still finds herself in Wynnum most of the weekends.
(17:10):
I don't think she can keep away.
Well, you're a lovely mum. I don't blame her. Thank you. You're very beautiful.
Great to be with you. You have such a good vibe about you. Thank you.
Thank you so much for coming in. I really appreciate that and sharing that.
It's a really lovely story. So if anyone does want to purchase it,
it's going to be available from the little known fairly soon.
Yeah, yeah. And we're going to do a book signing on the 6th of June,
(17:33):
I think it is. Oh, great. Yeah, and Tom will be there too.
Oh, very good. Well, that'll be nice. We'll have to make sure I pop over and
have a look. Can I ask you, how did you do the illustrations?
Did you find someone to do it for you? I did some digitally myself.
How? And then I took them to Amazon and I said, hey, can you zhuzh these up
and keep going with the illustrations? This is what I want. And then we worked together. Yeah.
(17:57):
That's fantastic. It was really good. Yeah.
I'm very impressed. Thank you. It's amazing. So all these things that you see
on TikTok things, they actually, you can actually do them like,
you know, the self-publishing of things.
Well done. Thank you. Well, thank you so much, Melissa, for coming in. I really appreciate it.
So thank you for joining us on this captivating journey through Lytton's Local
(18:18):
Legends. I hope that you've enjoyed this wonderful conversation with Melissa
and enjoyed spending time listening to her as much as I have.
I can't stop smiling. She's such a beautiful, smiling human being.
If you love this episode, make sure to subscribe to the Peace Podcast so you
never miss an opportunity to discover more stories of the extraordinary individuals
(18:39):
just like Melissa and Tom and Chloe and Paul,
and who have made Lytton the vibrant place that it is today.
We'd love to hear your feedback and suggestions for
future episodes so please feel free to reach out
to us on social media or through my website and
remember it's your engagement that keeps this podcast alive and thriving join
(18:59):
us again next time as we continue our mission of celebrating the unsung heroes
just like melissa thank you that make lytton a truly special place to call home
Until then, stay curious,
stay inspired and keep celebrating the legends in our Bayside.
This is Joan Pease, your host, signing off.
(19:21):
Music.
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