Deb McNair
A Mother's Care and Love for a Child with Down Syndrome with Deb McNair
A mother's refusal to abort, then her fierce advocacy for her daughter's right to thrive.
Hear this story
Kintsugi Studio
Deb McNair
A mother's refusal to abort, then her fierce advocacy for her daughter's right to thrive.
Hear this story
When Deb McNair was pregnant with her second child, medical staff pushed her aggressively to terminate the pregnancy after prenatal screening showed Down syndrome. She refused. Years later, sitting with her now 13-year-old daughter Ella, Deb describes what it actually means to be a full-time carer for a child with complex needs, and what kept her standing when the weight of it threatened to pull her under.
Ella was an easier baby than her older brother, but the early years were shaped by confusion: therapies, early intervention, the medical model that says your child needs fixing. Then came two years with no support at all, waiting for the NDIS to arrive in their region. The turning point came at a music therapy group when Ella was six months old. There, Deb met a tribe of mothers who understood her life without explanation. That network has held her for over a decade, around the clock, across continents. She also found her partner Dave, her Christian faith, and the global T21 Moms community to be her greatest sources of strength.
Now Ella has autism and PDA alongside Down syndrome, which means low-demand parenting, careful handling of transitions, and days shaped by unpredictability. A 45-minute shoelace crisis. A day when the whole school searched for her and police arrived at the house. Mornings when she makes breakfast for the family, and mornings when nothing works. Deb's advice to other carers is direct: find your people, reject the idea that your child needs fixing, and choose to celebrate who they are. The medical establishment will tell you one story. Choose a different one.
“Your child is perfect just the way they are. Um, and just to celebrate them and just love them. And, and I think when you're in that headspace, it's just a whole different, it's a whole different world of sunshine.”
“It's not about all the therapies. It's about playdates, it's about birthday cakes, it's about, you know, eating this cake.”
“I'm just really blessed to have this beautiful little baby with Down syndrome.”
The hero, today
Deb was pushed aggressively toward abortion after a prenatal Down syndrome diagnosis and refused, saying she had been advocating for Ella to live from before she was born. The medical model tells you to fix your child, but the social model says your child is perfect just the way they are, and Deb chose the latter frame entirely. Deb found that the community of mothers she met through a music therapy group at six months gave her more wisdom and support than the therapy itself, and that network has sustained her for over a decade. When a nurse asked something hurtful, Deb's husband Dave called it 'a teachable moment', and Deb used it to educate medical staff about being curious with families instead of judgmental. Ella has autism and PDA alongside Down syndrome, which means she needs low-demand approaches and careful handling of transitions; getting her to bed on time shapes whether the whole next day will be possible. Deb's greatest strength has been her Christian faith, her partnership with Dave, and the T21 Moms tribe of women across the world who say to each other 'you will get me through this' at 3am when no one else understands.
Yes. Deb McNair is a real person who shared their own story in their own words. Kintsugi Heroes is a not-for-profit that shares first-person stories of overcoming adversity, told with the person's consent.
Kintsugi Heroes, a registered Australian not-for-profit. Every story is shared with the hero's own consent and reviewed under Kintsugi Heroes' trauma-informed content standard before it goes public.
Deb was pushed aggressively toward abortion after a prenatal Down syndrome diagnosis and refused, saying she had been advocating for Ella to live from before she was born.
The medical model tells you to fix your child, but the social model says your child is perfect just the way they are, and Deb chose the latter frame entirely.
Deb found that the community of mothers she met through a music therapy group at six months gave her more wisdom and support than the therapy itself, and that network has sustained her for over a decade.
When a nurse asked something hurtful, Deb's husband Dave called it 'a teachable moment', and Deb used it to educate medical staff about being curious with families instead of judgmental.
Kerrie Atherton (Host) · 00:00
This limited Kintsugi Heroes podcast series was made possible with grant funding from the Boopa Foundation Australia through their Community Grants Program. If you'd like to find out more about Kintsugi Heroes, head to kintsugiheroes.com.au. Welcome to our Kintsugi Heroes special series, Australian Carers, where we shine a light on the stories of the important Australians who provide voluntary care for someone in need. In this episode, Kerry Atherton had a chat with Deb McNair, a devoted mother and carer to her daughter Ella, who was born with Down syndrome. Deb shares her journey filled with challenges and triumphs, giving us a glimpse into the world of caregiving with heartfelt stories and valuable insights. Now let's get to the conversation.
Deb McNair (Guest) · 00:56
Welcome to another episode of Kintsugi Heroes. I'm Kerry Atherton, and today's guest is Deb McNair. Deb is the mum of lovely Ella, who was born with Down syndrome, and today we're going to be talking about her role as a carer for her beautiful daughter. Good morning, Deb.
Kerrie Atherton (Host) · 01:15
Good morning, Kerry. How are you?
Deb McNair (Guest) · 01:18
Good, thank you. So thanks so much for coming on and sharing your experience on this podcast.
Kerrie Atherton (Host) · 01:24
Yeah, that's okay. It's nice to be here, Deb.
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This conversation includes welcome, no one tells you what it's really like, advocating for ella before she was born, the early years and two models of care, the gap years without support and the music therapy group that changed everything.
Deb McNair (Guest) · 01:27
So many people don't realize what they're in for when they first become a mum.
Kerrie Atherton (Host) · 01:33
Yeah.
Deb McNair (Guest) · 01:34
And we go from just being with our partner to bringing a child into the world, and that in itself, being a carer for a child, really takes many people by surprise. But then realizing that you are a carer for a child that's been born with a disability and/or high needs, that's another story, isn't it?
Kerrie Atherton (Host) · 01:56
Yeah. Yeah. I still remember when we had our first baby, Sam, her big brother, and, um, He just was crying a lot. And I remember looking at my husband and said, no one told us it would be like this. 'Cause you just see pictures of happy babies with, with, um, yeah, being held. Um, so yeah, he was 2 when we had Ella, who was diagnosed, um, probably a week after birth with Down syndrome. I was, um, advised, uh, when I had some scans, when I had the 12, 13-week scans to have, um, further testing, and pushed quite aggressively, pushed, pushed towards abortion, um, which I refused with the sonographer, who then went and got the, um, the manager of that service, who then came and applied pressure. So been advocating for Ella before she was even born to live.
Deb McNair (Guest) · 02:53
That's sad to hear that, isn't it?
Kerrie Atherton (Host) · 02:55
That was, yeah, it was really intense. And then when she was born, I, um, I still remember just wanting to go and sit in his surgery with my beautiful baby. Like she was just perfect, but she just has Down syndrome and say, look, look at my beautiful baby and everything's fine. You know, it's not.
Deb McNair (Guest) · 03:16
I know I have a few friends with child with Down syndrome and those children are the most joyful. Children and bring so much joy, love, and happiness to the family.
Kerrie Atherton (Host) · 03:28
Yeah, well, yeah, she, she has those moments, and like all of us, she has all the emotions. And, um, she's, uh, 13 now, so we're hitting puberty, and, um, she's doing really well. Yeah, it's really proud of her.
Deb McNair (Guest) · 03:46
So can you tell us a bit about her journey then from when she was born? And the different significant needs, uh, in caring for a Down syndrome baby as opposed to a baby that doesn't have high needs?
Kerrie Atherton (Host) · 04:03
I was made, um, redundant, I think, probably. I think it was just after she was born. I can't remember now. It's a bit of a blur. So that in itself was a bit of a gift, although I didn't realize that at the time, so I had more time. So, um, I think it was very much— she was actually a much easier baby than my son, who was very sick and then refused to feed. There was a lot of concern for her around her birth weight and putting on weight, whereas Sam was like tiny, and there was a lot of pressure for me to get him to feed and to put on weight. So for me— and I also have postnatal depression when I had Sam, um which I didn't realize for quite a while till a friend of mine, a good friend, got in my face and said, I think you have that. And it was a bit of a shock. I was like, no, no. And then I went, oh my gosh, I do. Um, so yeah, Ella was an easier baby per se. She fed like a little trooper. She was just amazing. The only additional things, because she just had needs like, like Sam, was that there was just therapies, um, Yeah, so there's, yeah, there's a couple of different models where people looking at disability. There's like the medical model where you try and fix, fix your child, um, said that within inverted commas. And there's like the social model where she's just perfect the way she is and we just do what we can to help her to develop, you know, to her full potential. So when she was younger, I think, I don't remember, but we started speech therapy, which involved different things like blowing bubbles and raspberries and just encouraging speech. She knew sign language at a very young age. I think at 8 months, I was busy doing a business course because I'm a freelance editor, and she signed at me across the room, sleep, because I was so busy writing my business plan I'd forgotten to put her to sleep. Um, but yeah, back in those early days, we would do music therapy, we would do regular speech therapy, and, um, an OT when we could as well. Yeah. And then when she was around 7, um, the, the systems were changing and we got cut off from all services, uh, while we awaited the NDIS. So we had a few years of not a lot of external support. And so we have some family here in Brisbane and other family, all Dave's family's like all interstate and my family's interstate as well. I'd just like to say go the Blues at this point in time.
Deb McNair (Guest) · 06:37
Yeah, I'll support you.
Kerrie Atherton (Host) · 06:39
But David and I are both from New South Wales. So, um, when we finally, um, our region— I'm from Moreton Bay Region— we're one of the last regions in all of Australia to have NDIS support. I remember receiving the letter and I still remember just standing in my lounge room opening this big package and just sobbing, just crying with the huge relief that we could finally get more support for her and for us. Um, I think by this stage she must have been around— there was around 9, I think. So we'd had 2 years without anybody. They just kept saying, oh no, we're stopping, we're stopping. And it was, was really hard because we, um, just wanted the best for her, wanted her to get lots of help with her speech. And, um, she's actually— we've She's at school. I just met with her teacher a couple of weeks ago, and she just said that she's so impressed with Ella's speech and her ability to communicate. And, um, well, yeah, we put in lots of hard yards when she was young. And I remember crying when I was, oh, when I was just that new mom, and I said to my mom, I'm just worried that she won't ever speak, because, you know, Down syndrome is such a, it's such a spectrum, you know. One end, there's kids that don't walk until they're like 4 or 7 or 8. Yeah. And some that are non-verbal, you know, through to kids that just matriculate, go all the way to Year 12 and just are mainstream and, and are just supported in those places. So I remember thinking, I just, I just don't know if she'll speak. I remember my mum saying, Deborah, you could talk underwater with a paper bag over your head. I'm sure your daughter will speak. So I was like, thank you, Mum. And that's kind of a backhanded Sakan, comment. I was like, oh, um, well, yes, you're right. I do talk a lot.
Deb McNair (Guest) · 08:43
Yeah, it's a compliment. People have said to me too, uh, you know, you like talking. I'm like, are they being critical? But it's actually, it's actually a gift, isn't it?
Kerrie Atherton (Host) · 08:57
It is. Yeah, I know. I think back to my report cards. Deborah talks a lot in class. I was like, yes. But maybe one day I should get paid for talking.
Deb McNair (Guest) · 09:07
Well, that's, that's exactly right. And that's where it does come in handy.
Kerrie Atherton (Host) · 09:12
Yes. But yeah, that use of keyword sign, we started signing with Ella. I think we started, um, playgroup, um, no music therapy group through Down Syndrome Queensland. Um, when she was around 6 months to 8 months.
Deb McNair (Guest) · 09:30
Oh wow.
Kerrie Atherton (Host) · 09:30
And that was critical in me meeting a group of moms, some of whom like the babies were a similar age to Ella, some maybe a year or a couple of years ahead. And the wealth of knowledge in that room, it was far more than music therapy. You know, I had an incident where I took Ella, I took Ella for, I'm pretty sure it was a 6-month vaccination. And I had a nurse who just said something that when, when you're a new mom, well, I was anyway, I was quite fragile for a little while because people just stare. They stare at babies, they stare at difference. And this nurse said to me, why does she have Down syndrome? Oh my. And I remember just thinking, take a breath, it's okay. And Dave used to say— Dave used to say to me when things happen, because things do— people can say very rude and very archaic, horrible things that just cut you and you just stay at home for a few days. So I remember thinking, Dave says it's a teachable moment. And I thought— and I said to her, Well, why is— I still remember saying, well, why is the sky blue? And she just looked at me and I said, I'm just really blessed to have this beautiful little baby with Down syndrome. And I remember I'd noticed her because she had really nice shoes on. No, maybe that must have been her 3-month vaccination because when I went back to the 6-month one, and then I think I went home and cried, told my husband and told all these lovely ladies in this music therapy group. When I went back, I saw the same lady again because I don't forget faces. I'm a, I'm an early childhood teacher.
Deb McNair (Guest) · 11:06
You wouldn't forget a face that makes a comment like that.
Kerrie Atherton (Host) · 11:08
No, I taught for many years and so I saw her again and I thought, I'm going to say something to her supervisor. So I sort of said to the supervising lady, I need to talk to you. And I pulled her aside so this lady wouldn't see me pointing, but I said, that lady over there, she said this to me. And this supervisor lady just sobbed in my arms saying, I have twins who are visually impaired. And she said, I remember every negative comment that was ever made by a doctor or a medical professional. And so she was crying on me about things that— and her daughters were teenagers. I remember her saying they were teenagers and they did horse riding. Um, and did all these things. And she said to me, I will speak to her. She said, I will use this as an opportunity to talk to all my staff here giving vaccinations and talk to them about, you know, not asking questions like that. Yeah. Or being more curious rather than something just that will just upset and possibly offend someone. I gave— I happened to have a card on me for Down Syndrome Queensland. Um, one of the staff members, her name's Rachel Carr, she now has her own, um, own business called Alume. Um, but Rachel had a brother with Down syndrome and actually visited us in hospital when we first had Ella, which was amazing. I still remember her saying, my brother, I'm so jealous of him, he does like swimming, he swims with them. Oh, what's it called? Special Olympics. And how he's traveled to all these places all over the world and how he had all these passport stamps and more friends on Facebook than her. And she just made it, made us realize that the future is just so bright because the world has just changed so much from when, because when her brother was actually born, the hospital said, oh, you can leave him here. And go home and try again to Rachel's parents about her brother. And they were like, no, no, he's our baby and we're taking him home. Oh, and that's medical stuff. Like, he, um, I think Rachel's in her 30s now. Wow. Sure, he's older. So that's like just 40 years ago that that was the attitude towards disability. Wow.
Deb McNair (Guest) · 13:36
You mentioned before about encouraging people rather than being judgmental to be curious. I think something that's really important is that we don't often take into consideration as a society, we think about the impacts and at home, the daily care of somebody that may have higher needs, but we don't often take into consideration the emotional care of the carer and the emotional— you know, it's of the carer. So Given your comment about people being more curious, can you, it might sound like a strange question, but there would be a lot of people that don't actually understand what that is. Um, be an example of something that you would feel was somebody being curious rather than judgmental.
Kerrie Atherton (Host) · 14:27
Yeah. So I remember having a lady who was very old who called Ella. The word that starts with M that I really don't even want to say, but, um, called her, yeah, an M-O-N-G-O-L. Um, and my sister-in-law, Dave's big sister, just nearly— well, she didn't jump down her throat, but she was right there, like, defending me, defending Ella. Um, through to when I remember going to baby Pilates with Ella. Well, she didn't do Pilates, I did. And that lovely Pilates teacher, her response to Ella with Down syndrome was the most beautiful I'd actually experienced. She said, oh wow, your baby's got Down syndrome. She's so beautiful. Oh, she's so amazing. And she said, this must be really special for you. And I remember crying because I didn't, I didn't get that response from Yeah, well, people don't know how to respond. Yeah. And because she was my second baby, I remember getting upset there weren't all the flowers and everything, and people were like, no, no, is she your first or second? And I went, oh, she's my second. And then, um, but people were very, very much supportive from the start. Yeah. And especially her aunt, her Auntie Sarah, should be a special mention. She would just babysit her. I've got a photo here actually that she took of her when she was a newborn. It's just gorgeous. Yeah.
Deb McNair (Guest) · 15:58
You wanna show us?
Kerrie Atherton (Host) · 16:00
Yeah, I'll see if I can get it. It's just here beside me. Oh yeah, there she is.
Deb McNair (Guest) · 16:04
Oh yes, yes.
Kerrie Atherton (Host) · 16:05
Oh, so that's one of my favorite photos of Ella that Sarah took when she was baby. Great photo.
Deb McNair (Guest) · 16:13
Deb, do you think that gender comes into it as the role of a carer in your situation? Because I know that you and Dave both have worked. And had jobs.
Kerrie Atherton (Host) · 16:27
Yeah, yeah, we both work. Like, he works full-time and, and still plays a very big part in a caring role.
Deb McNair (Guest) · 16:34
He does, doesn't he?
Kerrie Atherton (Host) · 16:35
Yeah. And for a little while, he was actually doing two jobs, but I've just started doing some relief work with, um, the Department of Education, um, so he can stop that second job because I just said, you just need to slow it down. So, yeah.
Deb McNair (Guest) · 16:51
So outside the NDIS, is there any financial support for you as the mum of a Down syndrome baby or child now?
Kerrie Atherton (Host) · 17:00
Yeah, we've just recently linked in with, um, an organization. I think they're based out at Stanford, and this lazy lady has written her book, and they just do just free things for carers.
Deb McNair (Guest) · 17:15
All right.
Kerrie Atherton (Host) · 17:15
I went for a day. A lady talked to us about, um, like box breathing and looking after yourself Like there are women there that were just so, so burnt out, you know, because they don't have any support around them or can't get carers, consistent support workers to help with their people due to different things.
Deb McNair (Guest) · 17:37
And no support from Centrelink?
Kerrie Atherton (Host) · 17:39
No, very limited. We get like a carer allowance, which is like $150-something a fortnight, which doesn't go very far. No, when you consider one physio appointment is like $198. Yeah, probably more now. That was probably last year's. But yeah, and I had some time, we had a little chat and we sat on beautiful chairs. There was morning tea, there was lunch, we did some art. And then in amongst that, this beautiful massage lady would come and get you and take you away and give you a massage. And then the afternoon there was a meditation. Which I may have fallen asleep in because it was just so relaxing and beautiful. Um, and that was an incredible day for us all just to meet each other as well and just to realize that— because sometimes you actually feel really quite isolated in the role. Ella's quite a homebody, so I like— I've taken her away sometimes. I took her away up the Sunshine Coast and then she refused to like leave the unit, so I was kind of stuck. It was a very beautiful space, lucky I'd chosen somewhere with ocean views, but, um, it was a bit of an expensive weekend just getting food, Uber Eats in. Um, she would go downstairs to the swimming pool, um, and we just stayed a couple of nights and chilled out and just had some time away. She loves Caloundra, so—
Deb McNair (Guest) · 19:04
and so she's very particular about some things, or is it social anxiety that leads her to not really want to go out?
Kerrie Atherton (Host) · 19:11
Um, I think it's both of those. So she's had a couple of extra diagnoses now that she's older. I was saying to our pediatrician nutrition for a few years, I think this is more than Down syndrome because I, in my role as a teacher, I've taught, um, a program at Down Syndrome Queensland where I worked with adults with Down syndrome. And so I knew that this was more than just Down syndrome. And now, and I was right. Um, so last year, finally, after a really tricky transition to high school, which was so hard for her, um, yeah, she's been diagnosed with, having autism as well. And also, okay, um, something that's just being made more common at the moment and people are gaining more awareness around it, but it's called PDA, which is pathological demand avoidance. So you have to give low demand. It's similar to ODD, um, but different. So if I say to her, oh, you've got to get dressed, we've got to get dressed, we're running late, we're running late. It's just all too much. So I'll say, here are your clothes that you need for today. I'm gonna go and finish your lunch and, and I'll come back and, oh, probably even that's too many words, but I'll just lay things out, walk away, and hope that I come back and she's dressed. So it's like the no eye contact, low demand, and that's been really hard for us all. To, and if the demands are too much, she'll just shut down or have a meltdown and cannot be rushed. She's just very time blind and doesn't understand school starts at 8:50 and we need to leave at this time. Um, so that's something we're working through, her understanding of time, visual schedules, and, and lots of patience. And Dave and I both reading through some books I bought recently. I went to Resilient Kids Conference, uh, with at this, at the Gold Coast, and I just bought, I spent, yeah, some money on some really good resources and yeah.
Deb McNair (Guest) · 21:20
Cause just something like that, the, the time it takes to get her ready or help her get ready for anything in itself is, is very impacting on your and Dave and the rest of the family's time, isn't it?
Kerrie Atherton (Host) · 21:33
Yeah. And transitions are really quite difficult. So this week we are getting ready, um, and she's had like those shoes with Velcro for a very long time and her shoes just got really old. So I threw them away cuz I'd bought all these other lovely shoes that she said she liked about 6 months ago. And so we now have shoes with laces and there was quite the incident this week where it took us about half an hour to get the laces. You have to do a double bow and then keep doing them until the laces are tiny and then she's happy. To, to move on. But in the middle of all this, my son and I had the day off thanks to Ekaholiday. And, um, I was just laughing hysterically because I was just trying so hard to be calm and, and I couldn't stop laughing till I was hysterically crying. Um, lots of tears of laughter coming down my face. But, um, and they thought that their mother had lost the plot.
Deb McNair (Guest) · 22:32
How did Ella respond to you laughing about that? Did she laugh with you or Or did she take offense and get—
Kerrie Atherton (Host) · 22:41
Yeah, she kind of laughed, but she was just all focused on the shoelaces. Right.
Deb McNair (Guest) · 22:45
She was kind of in her own world with that.
Kerrie Atherton (Host) · 22:48
Very much so. Yeah. And Sam, my son, was there and we got her to school.
Deb McNair (Guest) · 22:54
How long did the shoelaces take though?
Kerrie Atherton (Host) · 22:56
I think you said, yeah, 45 minutes.
Deb McNair (Guest) · 23:00
Wow. Just to tie, just to tie the shoelaces.
Kerrie Atherton (Host) · 23:03
Because they have to be just right.
Deb McNair (Guest) · 23:05
Yeah. And what would've happened though?
Kerrie Atherton (Host) · 23:07
If they weren't, oh, she would not have gone, right?
Deb McNair (Guest) · 23:12
So they're okay.
Kerrie Atherton (Host) · 23:13
Yeah.
Deb McNair (Guest) · 23:14
Yeah.
Kerrie Atherton (Host) · 23:14
So it's that those transitions times that are really hard, and that's when, um, the use of touch. So you can touch her arm, hug her if she is allowing hugs. Sometimes she does not want to be touched and she's hypersensitive on her head. And the other thing that helps in those transition times, we need to move to somewhere else, is is laughing or just— so I do all this weird slapstick humor. She goes like, zzzt, at me, and I have to pretend like an electric shock. So I do the things I do to get her to school. I remember one day she insisted, when she was in primary school, insisted on going in her little toddler car, you know, those little bright yellow cars. So I pushed it. We lived like, we're 5 houses across the road, and that's cool. So I pushed her all the way to school in this thing. Got her there. I was like, go me! And took a photo of it and said, things you do to get your kid to school. Um, and then I remember winning— I actually won to, um, oh, it's like a, not a silent auction, but it was one of those things where you just put a price. And I won the principal's car park for a whole term. And like, people laughed and thought, but that it made it so easy to get her to school for that whole term. I could drive, you know, wet weather, rainy weather, drive and get her to there. And then I had the staff, um, from the special ed unit or just other staff who knew her or her friends that would then help me to get her from the car to school because this was before we knew, um, about her autism and just which would then give us more ideas to just to scaffold it and help her. So, um, yeah, that was pretty cool.
Deb McNair (Guest) · 25:05
Oh, so is she, is she fussy with like food? So what, what is, what's a, what's a day like in your home as caring for Ella now that she's a 13-year-old? And what do you have to take into consideration that you wouldn't if you weren't caring in that role?
Kerrie Atherton (Host) · 25:24
Yeah. Um, it's, yeah, it just depends on if it's a school day or not. For the first half hour of waking, she's pretty, she doesn't really like to talk a lot to me, but then after half an hour, so we start early. Um, and then, and do you know, other mornings she's amazing. She gets up and like makes me breakfast. On my birthday this year, she made me breakfast, made everyone breakfast in the family. And my son was saying, Oh, thanks for brekkie, Mummy. And I was like, oh, thank me. Thank you, sister. And he was like, oh, because he's more, you know, lay in bed and get me breakfast. And Ella's the, I'll make you toast and bring it to you. Oh, so yeah. Yeah. She's amazing. She can make pancakes, but my son has recently learned to cook bacon.
Deb McNair (Guest) · 26:13
So we're getting, so yeah, someday she'll be leading the way in the cooking department.
Kerrie Atherton (Host) · 26:19
Yeah, and that's why it's just all a bit unpredictable, because some days she'll get up, make her lunch, get dressed, um, and then other days it's really quite tricky. And I think that's probably hormones and sleep, um, because, um, people with Down syndrome actually mostly all have sleep, um, sleep difficulties.
Deb McNair (Guest) · 26:38
Okay, right.
Kerrie Atherton (Host) · 26:39
So for, for us, getting her to bed earlier on time is really it's really crucial to how the next day will pan out. Yeah.
Deb McNair (Guest) · 26:49
So the unpredictability and not being able to, um, predict the atmosphere from one day to the next, how does that impact on you emotionally and how do you take care of yourself in the middle of caring for Ella and Sam?
Kerrie Atherton (Host) · 27:07
Yeah. Yeah. So I think one day, a couple of weeks ago, I ended up just giving her a mental health day because she was just not going to school. I think I'd had plans and then, um, I called Dave and he was able to, um, support me to just go through with what I needed to. And we just shared, shared that day. Um, his work's really flexible with him. He can work from home or, um, it's like we used to take turns in having a sleep in. We'll, make sure we both look after ourselves. He goes for walks or kayaks early in the morning, and I'll go for walks like after dinner or— yeah. And then, um, effort, hey?
Deb McNair (Guest) · 27:53
Yeah.
Kerrie Atherton (Host) · 27:53
And then my son sent me a text last week, um, after a rough day. He must have had a rough day at school, and he's like, we need a holiday. So, um, I've just booked in. We've— I found out we've got a pupil-free day And so we're all just going to take a couple of days off and go away for a couple of nights. And then I surprised them with— I booked a night in the city for Ella and I having girls' night. The boys are going to footy and I think the next morning is Father's Day. So yeah.
Deb McNair (Guest) · 28:26
And well, with what you were saying though before about Ella not sometimes not wanting to leave.
Kerrie Atherton (Host) · 28:33
Oh yeah. Yeah.
Deb McNair (Guest) · 28:34
Apartment. Um, it could be anxiety or stress for you going and planning something special like that, but then not knowing if you're actually gonna be able to get out and do that.
Kerrie Atherton (Host) · 28:45
Yeah. Oh yes. So I am those type thing. So now we take food with us. Also when, um, when she was in grade 6, she was diagnosed with, um, celiac disease after years and years of always having a sore tummy. And her favorite food is carbs. So it's so many questions and I kept saying it's always sore. Why is it always sore? So anyway, yeah, so now we, we take food with us, so we're good to do stay in. And I'm planning that night will be a stay in because she doesn't like loud fireworks. She doesn't like being there, but she likes to watch. So yeah, I think there's a rooftop place where we might go up to. Yeah. Oh yeah, because that weekend when we were at Caloundra and I kept going down for Uber Eats, she followed me out of the apartment and when I came back up in the lift, she was sitting there with the lift open.
Deb McNair (Guest) · 29:44
Oh shit.
Kerrie Atherton (Host) · 29:45
Um, and I was just really glad she didn't go in the lift and go because I wouldn't have been able to find her, which leads me into a whole other topic of, yeah, Ella used to be a runner. She used to run away sometimes. And one time when she didn't actually run away, but we thought she had, we had a police unit at our house. The whole school was looking for her. A second police unit was on the way.
Deb McNair (Guest) · 30:09
Oh God.
Kerrie Atherton (Host) · 30:10
And this lovely policeman found her in Sam's bed, hiding deep down under the covers. And she was actually asleep. So poor little thing. I was out the front hysterically crying and Sam was like, will we ever see Ella again? And I was like, just being, you know, all positive, going, of course you're going to see your sister again. And, oh, and so she woke up. She was in prep. She woke up and there was me, Dave, big brother, two policemen, our neighbor, bedroom.
Deb McNair (Guest) · 30:42
Oh wow. And she's like going, what's the big fuss?
Kerrie Atherton (Host) · 30:46
Yeah, that's exactly right. And then the funniest bit was Sam goes, oh well, do I have to go school now? And I was like, yes, yes you do. And I was actually flying out that day to go to— I've never been to Tasmania. I was flying to Tasmania for my friend's 50th, and I remember I got to Melbourne and I was calling the local police station saying, I'm so sorry. And they said, no, don't be sorry. They said, it's really good practice for our, for all our police to know what to do. 'Cause I still remember calling it in and I was kind of, I was kind of a bit okay. And then when the lady on the other end said, is there a body of water near you? That's when I got absolutely hysterical. 'Cause we, I live in a suburb called Albany Creek. Oh, so of course the creek is just behind the houses across the road. And that was when I, some poor guy was riding a bike and I'm just running in front of him in the road going, have you seen my daughter? Oh my God. And I, cause yeah, I was just desperate to find her.
Deb McNair (Guest) · 31:49
Um, but she's growing up a bit now, hey?
Kerrie Atherton (Host) · 31:52
So yeah, so, and then when she got a bit older, she's gone from running to now wanting to stay inside. She would pack a backpack and you'd see her and you'd go, where are you going? I'm going to visit such and such. And then I'd say, oh no, you're not. Um, yeah. And the other thing that she used to do and has just done once lately is just where she locks people out. She likes to prank. But yeah, she, she locked my husband out and Dave and I would, Sam and I were doing Jetty to Jetty and I finished the race. Of course I didn't have my phone on me. Got back to our car and I'd missed 7 calls from Dave and about 10 from my neighbor. And as I was freaking out going, I wonder what's happened? And she'd locked Dave out and then she accidentally got stuck in Sam's door cuz she's, um, she was just so little and she couldn't open the door. And Dave couldn't get in. And of course I knew I was doing a race, so I didn't want to take all my keys. So all I had was my car key. Oh, wow. So that was a Sunday. So then it was Sunday rates for the person to come out and break the locks and get us in and new keys. And, and we just had to try and keep her calm from outside. So she was just freaking out and trashed Sam's room and he's like, my room. And I was saying, it's okay, we'll all help you tidy it. She's just really upset. And her little plan of like a fun thing, locking Daddy out, just went very pear-shaped, and she was really quite frightened. Yeah.
Deb McNair (Guest) · 33:22
Deb, what's been your greatest source of strength on your journey as a carer?
Kerrie Atherton (Host) · 33:28
Um, well, that's a really good question. I, I am a Christian and, um, I have some beautiful, uh, Christian friends. Um, so yeah, I think my faith and also just, you know, Dave and, and our, um, and the, the tribe, the tribe of women, some of whom I've never met and I've been friends with them for like 12, 13 years now. Um, yeah, they're just amazing. So there's a group that one of my friends started called T21 Moms, and I just recently went to World Down Syndrome Congress and I was planning on going to some other workshop but ended up in this room and just the, energy in this room. There was T21 Moms, there was another one where they send out a beautiful box and beautiful books and things when you have a baby with Down syndrome. I can't remember what it's called now, it's really bad. Um, them. And then there was another organization as well that had all just been like created in the last 12 to 13 years. And the support and the tears, like there were people from remote places saying, no one here gets me, but you all get me and you will get me through this. And I— my friend beside me was sobbing because she was— and I had tears. And it is just incredible. And you could go on like in the middle of the night when you're breastfeeding your baby with Down syndrome or whatever, and there's always someone. Like, they're all over the world as well as like an Australian hub. Um, and my friend Joel started that. She's now down in, um, Tassie.
Deb McNair (Guest) · 35:09
Right.
Kerrie Atherton (Host) · 35:09
Phillip Island. Is that more Phillip Island? Yeah.
Deb McNair (Guest) · 35:13
So she's 21 months. What's the T21 stand for? For anyone that—
Kerrie Atherton (Host) · 35:18
T21 is, um, there's, I think, oh, here's a— I might make a mistake here. There is not just one form of Down syndrome. Okay. So Ella has T21, which is like, I think it's 85%, 85 to 95% of people with Down syndrome have that one. There's another one called, oh, I haven't had a lot of sleep this week.
Deb McNair (Guest) · 35:41
No, that's okay.
Kerrie Atherton (Host) · 35:41
Yeah, there's, there's other forms of Down syndrome.
Deb McNair (Guest) · 35:45
Yeah, but the T21 stands for—
Kerrie Atherton (Host) · 35:48
T21 stands for Down syndrome. So I had this amazing big sticker on the back of my car with T21 moms and something else, and all of it has all come away, but the T21 is still there. And even when my windscreen wiper goes, it still just stays. It's pretty cool. And I get a lot of questions of, what does that mean? And, um, and yeah, I still remember getting the cool little, the actual picture of the chromosomes from her blood test that, um, defined which kind she has and that she has that. And it would just look like all these little cool socks. Um, and that's something that they have. World Down Syndrome Day is 31st of March, which is the— no, 21st, 21st of the third. All to do with the 21st chromosome. Yeah.
Deb McNair (Guest) · 36:35
Right. And I think that, that title T21, that's a perfect invitation for curiosity, isn't it?
Kerrie Atherton (Host) · 36:43
Yep. Yeah, that's right.
Deb McNair (Guest) · 36:45
Like the Trade Much shirts.
Kerrie Atherton (Host) · 36:47
Yeah, yeah, yeah, yeah. So I have staff at my school who might ask, cuz not everyone knows I have a daughter with Down syndrome. I work as a school chaplain at a little primary school. In, um, Brisbane on the north side. So yeah, it's often, yes, it's often a little conversation starter. Yeah.
Deb McNair (Guest) · 37:08
And it's so great to hear that you have so much support out there.
Kerrie Atherton (Host) · 37:13
Yeah. Yeah.
Deb McNair (Guest) · 37:14
So wonderful.
Kerrie Atherton (Host) · 37:16
There's also a mom within our T21 tribe who had the idea that we should all get a tattoo. So the lady who had the idea, that's my friend Joel. She's not had the tattoo, but, um, another mum actually designed it. It's amazing and beautiful, and I haven't been brave enough yet to do that. But all these mums have got the same tat, whether it's on their arm or their leg or, um, you know, on their back. Um, and they're all sharing the photos recently on this little Facebook group, and it was so funny. And Joel was like, haha, I've yet to have mine. And they're all like, yeah, it's just, um, black and white, single line. And it's really nice. Yeah.
Deb McNair (Guest) · 37:57
A question as, as we come to a close now, a question that I've asked, uh, some of the other guests is what words of wisdom or encouragement would you give to any other mums that are out there that are caring full-time, um, in a role like yours for their children who have higher needs than others?
Kerrie Atherton (Host) · 38:21
Yeah, I would say to find find, find your tribe, like find people, whether or not it's the same diagnosis as your child or, um, or a different diagnosis. I think finding other people who really understand and get that life is, um, it's a bit different to how you thought it was going to be before you received your beautiful child. And, um, and not, not not taking that medical model of from the doctors and the people that say you need to do this and this, you know, to fix your child, because your child is perfect just the way they are. Um, and just to celebrate them and just love them. And, and I think when you're in that headspace, it's just a whole different— it's a whole different world of sunshine. Oh, that's— you need to just— because you can just feel so isolated. And I'm gonna get all emotional. Um, yeah, that's such a lovely— don't stay, don't stay feeling alone. And, um, I've linked in with a mom whose little boy's got Prader-Willi, which is a very rare chromosomal disorder, and helped her to seek, um, you know, help. There's an amazing organization called CRU in Brisbane, C-R-U, they're in West End. They do incredible stuff with helping people with kids with disability. Just seek a normal life, just a normal good life. Like, not all about all the therapies. It's about playdates, it's about birthday cakes, it's about, you know, eating this cake. And yeah, and it's about getting alongside those people when they— yeah, when they are having tough times.
Deb McNair (Guest) · 40:03
And oh, what a beautiful message to end our time. Deb, thank you so much. I know Ella and your family and you are real lights out there to everybody in your community and beyond.
Kerrie Atherton (Host) · 40:22
Thank you.
Deb McNair (Guest) · 40:23
So thank you for today.
Kerrie Atherton (Host) · 40:26
Thank you so much. It was really good. Thank you for listening to this episode of Australian Carers, a Kintsugi Heroes special series. To Colin Lilley for permission to use "Broken" as our theme music for this series. If you enjoyed this conversation, share the podcast with a friend and let us know by leaving a rating and review on Apple Podcasts, Spotify, or wherever you get your podcasts. If you'd like to support Kintsugi Heroes and the stories we share, head to kintsugiheroes.com.au and follow the instructions to make a tax-deductible donation. Thank you for listening, and we'll see you next time.
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