The Empowered Parent with Dana Baltutis

Episode 9: Sam Paior (Support Coordinator) - The Journey of Parenting Neurodivergent Children and Advocating for Change

• Sam Paior • Season 1 • Episode 9

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Sam, a mum, Support Coordinator and Founder of The Growing Space,  talks about her journey with two neurodiverse children, who have now grown into confident adults.  Through her experience as a parent and Support Coordinator who runs a successful business helping other parents, she shares the challenges and highlights of her joruney as well as important tips for parents navigating the world of neurodiversity. Sam is an inspiration for many of us and a great advocate for people who are neurodiverse.

https://www.thegrowingspace.com.au/who-are-we/

https://www.thegrowingspace.com.au/

danabaltutis.com, mytherapyhouse.com.au, https://mytherapyhouse.com.au/your-childs-therapy-journey/ https://www.danabaltutis.com/services

Dana:

Hi Sam, welcome to my podcast, the Empowered Parent. I'm so excited to have you on my podcast because I know you've worked with a lot of parents yourself and your single mum of two sons, both of them identifying as neurodivergent, and a business owner of a successful business which helps many families and clients called the Growing Space, and you are on many boards, organisations. You've been on committees or you may be on committees. You're involved in many community groups. You're a winner of various awards, including the 2020 South Australian Woman Mum in Business Award, Wow, and that's quite an amazing life and journey you've had in this space. And I've invited you here today, Sam, because I feel it's so important for parents like yourself , empowered parents like yourself, to share their stories with other parents, especially those who may be just starting their journeys of raising a neurodivergent child or two or three or four, or those who are really struggling in this domain and who might feel overwhelmed. Sam, could you please start by telling the listeners a little bit about yourself in your own words?

Sam:

A little bit about me. I have imposter syndrome. So when you read all of that stuff, I'm sitting here freaking out Because really five years ago I was just another parent of two disabled kids on a pension. I was running a business and helping people, but certainly wasn't where I am today.

Dana:

Has NDIS changed your lives?

Sam:

Yeah, big time. So before NDIS neither of my sons had any supports. They were both signed up with Disability SA and what have you. But I think in the 10 years before NDIS five years, whatever it was Ben, who has Down syndrome and dysautistic, is autistic got one speech therapy session once that was funded by the government, and other than that we had nothing for government. Now I've got a young man who's out there doing all kinds of things running his own business and he's on advisory boards and committees. This morning, Dana, he got on a plane with his worker to Melbourne to go to the Participant Reference Group for the NDIA and share his thoughts on a whole bunch of stuff.

Dana:

That's amazing!

Sam:

Not stupid support.

Dana:

And how old is he now?

Sam:

He turns 24 tomorrow.

Dana:

Oh, happy birthday to both of you. That is amazing.

Sam:

Incredible to think back on those first few days and weeks and months and even years, about how at times I just thought my life was over and that they would not have a life. And here we are, the younger ones at university studying psychology, and Ben's already been into uni doing the Up the Hill program and he's learned all about marketing. It's just amazing really.

Dana:

So you know, when you said that you thought your life was over. I know many parents that are just starting their journey and they're definitely in that space, thinking that their life is over, that their children are neurodiverse or they feel like they're not normal. "How do we make them normal? I mean, people are speaking like that all the time because of our systems. What would you say to those parents who are just starting that journey?

Sam:

I wish I could have spoken to me 20 years later. I think that's it and I think that's a really big lesson. I wish I had spoken to older parents back when my kids were really little, because I didn't didn't know them, wasn't really given opportunities, didn't get those peer connections with other parents or disabled kids. And really when Ben was born and I was told he had Down syndrome, I had this picture in my head of a man in brown polyester pants with a shirt buttoned up to the neck and a pudding bowl, hair card and terrible teeth and all of this stuff and I just look at my young man now and I can't stand the clothes he wears. but that's because he's Mr Cool, but that's Ben yeah. But it's just so far from what I had envisaged. I can't even begin to tell you. And people seem to think that Ben is some high performing. He's only got a little bit of Down syndrome. Well, there's no such thing as a little bit of Down syndrome, but also he's quite heavily impacted by his disability. His intellectual disability is significant. His autism is incredibly impactful on his life his OCD and other things which you know. Yet with the opportunities that he's had and the things that we've done, he's just. He is his own man. He's in a fantastic place. He's moving out of home this year. I never would have thought that. You know, I was one of those parents that always thought I would have to build a granny flat or an extension on my house. I think a lot of parents think that and I still talk to parents today that still believe that even when they're their children young adults, they still think that. But I can feel them shifting because the more opportunities we have for young people, the further they're going to go.

Dana:

And what supports were there in place for Ben that helped him become who he is today?

Sam:

Yeah, so when he was little the boys were actually both born in California and over there they had a pretty robust early intervention kind of system, and one of the things that we did when they were little that I will always be eternally grateful for was that we had a group early intervention program where there'd be a dozen of us that went every once a month and we went to this session and they would look after the kids or the kids would be in with us and they would have a professional come and talk to us a little bit about stuff. but really we just got a chance to be with each other. And they weren't all parents of kids with Down syndrome or all parents of kids with autism. They were this huge myriad of disabilities and health conditions. And it just meant that I learned so much and there's so much you can learn from the parent of a person with vision impairment. That's actually really helpful for you as the parent of an autistic kid, or of a kid with intellectual disability. So that sort of time together absolutely invaluable. You know, even though I've lived back in Australia now for more than 15 years, that group of women, and they were all women, that group of women, we are still friends. We still connect on Facebook we still talk. We still share the stories of our now adult children, and that, to me, is just it's awesome.

Dana:

I think I was talking to someone this morning, a parent and I was saying that these children come into our lives and our whole world grows from them. You know, because we don't really know about neurodiversity and different ways of being and different ways of perceiving and different ways of seeing, until someone comes into our lives that has a unique way of being and seeing and perceiving, and then we start to think, oh wow, I didn't know. You, could you know? Like you were talking about that parent with a visually impaired child. You know, and it's so important I think a lot of parents look for, oh, that's not like my kid, that's not like my kid. But I think we just need to look at do you hear what I'm saying? I do.

Sam:

But I want to add to it and I think the funniest thing that is when you start learning about autism and neurodivergence and intellectual disability and what have you, you start to realize all of those pieces in your own self, yes, and then you start to think well, hang on, if I'm like that, does that make me autistic? Yes, maybe it does. But even if it doesn't, what it does do is it helps you realize that everything that makes up our kids is part of just the spectrum of life, humanity. There's no line drawn in the sand that said that somebody is disabled. I mean you put me next to a person who's a quadriplegic using a wheelchair and Usain Bolt, the autistic runner yes. And everyone's going to say that. You know that my friend in the wheelchair is the disabled person.

Dana:

Yes.

Sam:

But they may not know that I wear bilateral hearing aids and have hearing impairment. Yes, now, certainly if we were being chased by lions, I would be the one eating, because Jocelyn's wheelchair is faster than me running, yes, and Usain can run really fast. Yes, but then my friend in a wheelchair is about to finish her law degree, so if we're in a courtroom, then myself and Usain are the disabled ones. So where this disability line is is really it's there is no line, no, no, and we're all just people. Yeah, and we have to look at people as people. And I know, you know, many parents have children with very profound disability. You know they're not speaking, they're not yet toileting or may not be able to toilet themselves or feed themselves or whatever. But there is a set of gifts, without being schmaltzy and ridiculous about it, that every person brings to our lives. Now I have a friend who has a 30 year old son with profound disability in that way, and I asked a lateness, his name, and I was like what are the gifts that Paul brings to your life? And he says, well, I've learned patience, I have learned to slow down, I've learned mindfulness. I now, I will now live longer because I am better at looking after my own mental health now because of Paul, frustrating as situations may be with him. He has just an end. He's opened my world to this amazing community of people. And I think you know I always worry when parents sort of really isolate themselves. And there is a natural isolation that happens from families where the children are developing typically and you feel judged or you feel you know, it's just you feel sad. You know, I don't feel any of that anymore but, I, certainly did when the kids were middle. But then when you start to associate with other families that have kids with disability, all of that just disappears. Yeah, it's just like nobody's got it worse than anyone else.

Dana:

Yeah, it's part of the tapestry, Everyone's part of the same tapestry, and I do think what I do like about the NGIS they've really opened up a lot of many minds. I know they've opened up worlds for people. Yep, there are. There's always, you know, struggles and there's always things that we're still learning about.

Sam:

There's a new world that needs to get better.

Dana:

But you know, the thing is, we're on a journey, Everybody's on a journey, and I think it's also important for parents to you know, speak their truth about. You know what the NDIS has given them, what they're feeling it might be difficult, that they might be having difficulty with, Because I know when I worked in Lithuania, it was the parents that moved a Soviet country into accepting and making community schools. It was the parents, it wasn't the government, right, Absolutely. And I think as a parent that's, I just see you and I see all the work that you do with your colleagues that also are parents and people with disabilities, and I think you guys are the movers and shakers, providers as well. But you guys are living it every day and Ben the bends of the world.

Sam:

Yeah, we don't have anyone in our company who's not either disabled or a parent of someone with disability, or is both. We have quite a few people. Yeah. And that's important, and I think it's important to be with both and it's just such. You know it means I guess it means that I don't even know how to put this, but it just means that when we're we're always thinking what if this was my child or my partner? So everything we do is has got that lens of one day. I mean, I know, you know, I'm in my fifties now. One day I'm going to drop dead, get hit by a bus, go to a nursing home, whatever it is that happens to me. I know that there's a whole community of people out there that are going to lift and take care of my son when. I'm not around, and one way to do that is to build a company that's full of people that feel the same way. And if we can filter that through to the rest of the community. That's so important.

Dana:

That's the way to go so important and were there any challenges for you when you were a young mum that you felt that? You know it was difficult times and how's the future going to be and how did you overcome that? Yeah, sure so.

Sam:

I'm not really often public about this, no, but when my kids were very young I was a victim of domestic violence, quite severe domestic violence, and needed to go to courts, and because, of course, we're in America, it was very difficult to be able to get the court approval to bring the children to Australia. So that was, you know, a three year court battle which I won, empowered mum, empowered parents, and I had no money, virtually no money, to pay the lawyer as well. So I was doing. I learned a lot about the law during that time because I had to do all my own research to get there. But we got there and when I got to Australia I think I was pretty broken. I was stone cold, broke, obviously on a care payment, you know, living in a pretty shitty rental and lucky to get a home, though compared to how people are going today and there was just no way that I could work a job, which just wasn't possible to work a job. The kids I mean my youngest one was in hospital fairly routinely. About every six weeks he would be in hospital for a week, and there was just no way any employer would tolerate that sort of working life. I mean, I was lucky, I had the privilege of an education and, you know, the ability to work, but, yeah, there was no job for me, which is where, of course, you know, my business came from. What can I do to support people? Because I did it while I was on a pension, for free, wow. And then, when the NDIS came along, I realized, well, hang on, this sounds like support. That's that support coordination thing. Maybe I can charge some people. Yeah. So I took, you know, a good six years of doing that before I actually made an income. Yes, but I was able to get off the pension, which was just an extraordinary thing. Yeah, it's pretty exciting to have been able to do that.

Dana:

It's something you love for others.

Sam:

That's the thing. I mean, that was the thing I was so passionate about it. I mean I can say, you know, I would have done it for free. I don't have to say that because I did do it for free for years and years. I mean, a lot of local South Australians would know about the little organization we started Parents Helping Parents and we would go to schools and speak to groups of parents of kids with disability and tell them about all the things that we wish we'd known about. You know the companion cards and all the little things that no one tells you. And now, well, now we get paid to do it.

Dana:

And so how would a parent now know about these things? You know the companion card, etc. Is that a support coordinators role?

Sam:

So what coordinators can help? The LACs are supposed to, but you know they're not. Well, some of them are great, but not very many.

Dana:

No, I think also with LACs.

Sam:

But really they just ended up as de facto planners and paperwork, paperwork, lots of paperwork. I wouldn't be an LAC for the world. No. But when you asked about where you got that information I mean where I got it from and where my friends we did this as a group, that parents helping parents thing where we got that information was we were all just information sponges where we would sit on the internet late at night and Google stuff. I think we're a little bit. We've got a better chance now because we've got that disability gateway and the care gateway.

Dana:

Oh yes.

Sam:

Yes, they're really good. You know they're not good. If you're looking for something specific, necessarily.

Dana:

No.

Sam:

But if you just want to troll around and browse and go down those rabbit holes, you know the click here, click there, click. You know 27 tabs open on your browser. Those websites are really good starting places.

Dana:

I know the Carers Gateway helped me a lot when I was looking for help for myself as a carer of my mother, and I actually didn't realise how much burnout I was in. So do you want to talk a little bit about that for people who might be feeling burnt out? Parents who are feeling burnt out, or?

Sam:

Yeah, look there's some mixed experiences with that Carer Gateway stuff. It depends on what state you're in and who answers the phone the day that you call. But there is absolutely free counselling available for carers, and that can be just invaluable.

Dana:

That really helped me, because I felt guilty and there was never enough time.

Sam:

I didn't do anything for myself until about three or four years ago.

Dana:

Wow.

Sam:

And that was a time when I decided that I needed to lose weight, because I had put on an awful lot and I got fit.

Dana:

Yeah, so did you feel like that was one of your things that helped yourself like getting fit

Sam:

I've never been a fitness person. You would never seem in a gym. I hate the gym. I'm so uncoordinated. I look extraordinarily ridiculous when I try and do any of those class things. So no, I don't do any of that. I just started walking. Yeah, I just started walking. I would go really early in the morning before the kids would wake up and. I'd sort of sneak out and just make sure I was really close to the house. Yes, that sort of stuff. Yes, now it's a bit easier. They're older. I can leave them at home. I have to organise care all the time.

Dana:

Yes.

Sam:

So there is light at the end of the tunnel. Yes, you probably won't have to sit at home all day, every day, looking after your children, and, of course, you've got the NDIS now. Back then I didn't have any support workers. Yes, there was no one to watch the kids at any point. Yes, you know family, but back then my mum was working full time.

Dana:

Yeah.

Sam:

So she didn't have any capacity really to help.

Dana:

And what about parents of very young children that are complex and they've gone to the NDIS and they've said, oh, we need some carers, and they were because they don't have family. A lot of them are immigrants or the new Australians here. How can they get help, sam?

Sam:

Yeah, it's really important for them to be very clear about why they need that help and why it's related to the disability rather than just a young child. All parents of young children kind of need a break. Yeah, that's right, but if grandma can look after the other two kids but can't look after your disabled kid because of their disabilities, then, you need to really make that very clear when you're talking to the. Ndis. Also, of course, there is the care gateway that can provide respite as well, yes, so that can be pretty helpful in smaller blocks.

Dana:

And I think it needs to be said, the Carer Gateway is for carers and not for the person. You know, because I know that that's what they told me was you like, I got Support Coordination for my respite rather than the person that I had to care for. So I think you know it's the way we word everything and we phrase everything. That's why I'm a very big advocate for support coordination. I talk a lot about support coordination to our families. If they haven't got support coordination in their budget, I always say in your next budget, please, please, ask for support coordination.

Sam:

Sometimes people don't need it in a big ongoing way. They might just need it. You know a one and a half hour meeting every quarter. Just to review and have a look over things. So if a family is self managing which I'm a deep believer in self management- they can use a support coordinator with those funds, even if they don't have a specific support coordination. That's good to know. I think that might change in the future. Of course, the NDIS review is recommending that we don't have support coordinators and that we re-imagine support coordinators and LACs coming together in this sort of navigator role, and if it works it's going to be brilliant. But you know, I don't know, I don't know, I'm not. I don't have a deep amount of trust in government to get it right. No, I don't have a great track record.

Dana:

No, but I don't know, I don't want to say never no, that's right and that's what I love about you, sam You're always positive. You are very realistic, but you're positive, and you will still work with the governments to make the system better.

Sam:

I just don't think you can whinge about stuff if you're not prepared to input Put the hard work in.

Dana:

Yeah.

Sam:

And I'm not, don't get me wrong. I'm not saying that parents of young children should be out there volunteering and doing all this stuff If you can't when your kid's a little you have to focus on yourself and your family.

Dana:

You just have to. There's no other option. So in some ways, when you're a parent of a young child at some level, you do just have to suck it up and invest in it and just say yeah, because I know that there are a lot of parents that are trying to work nine to five, five days a week, and then they've got the children's extracurricular activities, and then they've got the sibling's extracurricular activities and you know you've got to know your limits right.

Sam:

It's worth reviewing now. For many people that's an absolute necessity. If you don't do it, you don't have a mortgage, you can't pay your mortgage. But for many others there's other things you can probably cut back in your life and cut back a day, a week of work or an hour a day, or whatever it is or just reimagine how you work. I mean what skills do you have? And is there another kind of role? All of our well, very few of our support coordinators were support coordinators before they came to us Most of them. We've got someone who was a medical receptionist. We've got a woman who never I don't think she actually worked since her kids have been born and she's now doing incredible work as a support coordinator. We've invested a lot in training and all that, but I think I actually think that this navigator role, if it comes off, is going to be able to employ lots and lots of parents or kids with disability. So good yeah, I'm really hopeful because that will make the navigators better.

Dana:

In every way, and I know there's been a lot of parents that we've had. They've gone to become SSOs and work school hours, or, you know, they've changed their careers entirely because they never even knew about disability until their child came around, right.

Sam:

The first coordinator that I ever hired. Amazing woman. She was an SSO in a primary school where I had a client and I met her working with this kid and I thought, wow, you are awesome. And spoke to her. She now has postgraduate qualifications in positive behaviour supports and she's now lecturing at the university. Wow, right, and she was an SSO in a primary school. That's amazing. So, you know, I don't think any of us should put limits on where we can go.

Dana:

Yeah, I love it. I love it. What were some of the most rewarding times of you being a mum? Sam?

Sam:

I probably overly focused on those milestones. So the walking and the talk is so funny. Just like with typical kids, they start walking, you get really excited and then you regret it because, like, they're walking and they're into everything. And the same with speaking, of course, because now you know Ben can swear with the best of them. But, yeah, communication and mobility are good things to have if you can, I don't know, I think Ben representing Australia oh, huge, yeah at an international athletics competition, not Special Olympics he did do for Special Olympics as well, but this was for an international athletics competition that was actually qualified for the Paralympics, and to watch him wearing green and gold in that setting was pretty extraordinary. Wow, that would have brought a tear to my eye, oh, yeah. I took mum with me. We went to the competition and it was interstate and it was just such a big deal and it was so exciting. I really encourage people to get their kids involved in whatever their passion is. So, Ben calls himself a retired athlete. Now, that's code for lazy. No, I shouldn't say that he's not lazy at all, but he's real interested now with music. Wow.

Dana:

So he's creating a lot of music, and I love that. You say that we really need to go where the children's interest is, or where our young people's interest is, because often as adults, we project what we think our child would be good at, but they're telling us something else by what they're actually interested in.

Sam:

Yeah, yeah, it's a really interesting exercise and I've done this with lots of families and I'm going to suggest that your families do this. Yeah, often families don't value I don't know how to put this nicely we don't value our children, or we do value them, but we don't see the value in them that other people see. Everything about that. That's happening from the point I've got it. Now I'm not doing how I want them to. Oh, go ahead, yeah right, we love our kids. Yeah, yeah, our kids, absolutely, yeah, right. So a really amazing exercise is to send a text to five people that know your child. Yes, that you know don't necessarily, not necessarily your best friends but doesn't matter. Just five people who know your kid, yeah, and send them a text that says I just wanted to know, can you tell me three things that you value about my child? Wow, that's great. And the responses back yeah, of course they make you cry, yeah, but it is extraordinary how good it makes you feel as a parent to know that other people value the person that you love.

Dana:

What a great exercise Sending a text to five people in your life and asking them to write three things that they see, that they value or they like, or they think of your child. Yeah, wow.

Sam:

That's very powerful. It's incredibly powerful and I've done it with lots of groups of parents now and it's it has made for some extraordinary conversations and a real mindset change.

Dana:

Yeah.

Sam:

And I think we don't like to admit it. I think even that devaluing it's very subconscious. You don't even realize you're doing it, I do it, I still do it. Yeah, when Ben goes out wearing crazy wild, colorful clothes that I think look absolutely horrible and terrible together, yeah, I'm sitting there cringing, embarrassed, yeah. And then other people text me and say I love his fashion sense, and I'm like oh crap, yeah, I see that I'm just an old woman now. I'm out of touch, so it's, it is really, it's really valuable.

Dana:

It's worth doing Because Rose and I we did a podcast about anxiety and we talked about the subconscious and so much of our. You know, perception comes from our subconscious that we're not even aware of and you know, perception is projection. So if we're not happy with ourselves, often we judge the people that are closest to us, we project it.

Sam:

That's right, yeah, so there's also, you know, this thing called internalized ableism. Oh, yes, right, so we're you, you have a discriminatory, you have discriminatory thoughts about disability. Yes. Lends in that way, but you're not even aware of it?

Dana:

No, you don't know.

Sam:

It's there, no, but you do, you expect less of a person with disability, and we mustn't do that.

Dana:

No.

Sam:

We have to have high expectations, because that's right, because people will only ever achieve below what you expect. So if your expectations are low, you can never expect someone to go past that. No.

Dana:

No, and I think that's something I see in the families that you know I've worked with. When we are sure that the child's going to communicate, I'm like they're going to communicate, they're going to be okay. Mum, are you going to be okay? That's what I need. I need you to be. If you're okay, the child will be okay. But they're fine. Look at them, look what they're doing, and sometimes it's that lens that you know and, like you say, the mindset. We are shifting the mindset with, we're extending the lens and I think sometimes that's the therapy most of the time for us is that you know, like we love and accept their children for who they are, and look at all the amazing things they're doing. It's hard for a parent to believe that, especially if they've come from the medical model. Yeah, can you imagine so that I've come? Your child is like this, your child's like that.

Sam:

So we wish you could explain that medical model. It's also called the traditional model of disability. So the medical or traditional model of disability is where you know you go to the doctor because you're sick, you've broken something, you've injured yourself and the doctor fixes you. So the medical model of disability would be people with disability are broken and we have to fix a disability. That's why we see people trying to teach kids with autism to stop flapping or to make you in the eyes or stop stimming even that word.

Dana:

I hate that word and it's like well, hang on.

Sam:

Who has that ever heard? What is the problem? We're stimming it. It's not a broken thing, it's just part of this person. So there's this other thing called the social model of disability, which is a human rights-based thing and the social model of disability says a person with disability is not broken. What's broken is society's attitudes and access around them. So if, for example, everybody spoke Auslan, then being deaf would probably not be a disability at all. If every building, an environment, was wheelchair accessible, then using a wheelchair would not be a disability. If people didn't look at autistic people flapping and think, ooh, that's weird. It wouldn't be a disability Because it's not intrinsically broken or wrong. It's not like a health issue that will kill you. It's a disability issue. And it's not real. It's a social construct.

Dana:

That's right Social construct. Love it, love it, I love it. So, sam, how did you empower yourself and what did you do? How did you empower yourself to be who you are today?

Sam:

I was just an opportunist. Tell me more about that. I don't have a life path drawn out. I didn't have goals. I didn't do any of those things that everybody says you should do. I never set out to set up a business, never. It was just going to be me helping people and then it was ooh, I can charge people. And then I bumped into this woman as an SSO and I say you're really cool, do you want to do this stuff with me? I've got, because I had so many people asking me to do the work and I couldn't do it all, and it's just kind of organically happened that way. I've never. I mean, when I got a call from the Ministry of the Disabilities Office in Canberra saying we'd like you to be on the Independent Advisory Council, I hadn't engineered that. I didn't even know about that process, so I had absolutely no clue. I had to go and Google it all and look it all up. So there's no engineering of that for me. I'm not saying that doesn't work for other people, though. I think for a lot of people they need goals to work towards.

Dana:

But you've always been true to yourself, haven't you? You've always followed your heart, your path, you know.

Sam:

I'm a person with ADHD, so I am a bouncy person. I'm very easily distracted, which is good in a way, because it means when these opportunities or things come up, that I think are interesting, I just go and do them. I'm like goldfish in a bowl. I swim around. Oh, that's new, oh, that's new. So I'm always just looking and doing new things.

Dana:

But when I see your posts on the growing space, you've always got something amazing, like just the way you interpret information, the way you share that information with others. You just don't sit on the information, but you actually put it out there.

Sam:

I want everybody to live a better life. I had a tough time when my kids were little and I don't want people to have that tough time. I want them and their kids to live good lives all the way through. And if I had accepted my son's disabilities and I don't mean I accepted it, but I embrace it, love it, love them for who they were, regardless if I had done that sooner, that would have been wonderful, yeah.

Dana:

But I look now and I think, wow, this is amazing who you've become and who you are. And now you've got a great business which is helping so many people. Your sons are doing so well representing Australia, going on planes, speaking at functions that is huge. Yeah, it's super cool.

Sam:

That is huge we reached in the last 12 months on our Facebook we reached 2.2 million people. 2.2 million, I get some mind blowing. I mean, I know I'm not Instagram and in a bikini, but for a disability space, it's pretty incredible. That's so much help. Yeah, well, that's what I'm thinking. This is stacks of people around the country that are living better lives because of information we're sharing and that feels that does feel really good, that is so good, yeah, that feels awesome, that is amazing.

Dana:

So, Sam, what would be three things you could suggest to parents who are listening to be able to live their best lives and be the best humans and parents they can be for their child or children?

Sam:

Look, you hear this all the time and it all sounds woo-woo when your kids are little. But you have to get time for yourself. I don't care if it's literally 10 minutes, but you need to have 10 minutes every single freaking day. That's for you, whether you read a romance novel with you, watch Stupid Netflix with your water dog.

Dana:

Oh, I love Netflix. Yeah, Netflix is awesome and they've got some good programs on. Now they do.

Sam:

I'm watching this show called New Amsterdam at the moment. It's a medical show and I've got to say and I think I'm not alone among the disability sector we love the medical shows. We're either horrified and scared by them or we absolutely love them.

Dana:

And have you heard of Extraordinary Attorney Woo? No, that is amazing Extraordinary Attorney Woo for everybody. It's a South Korean show and it's about a young woman who becomes an attorney and she is on the autism spectrum Three years, but it's just a really good show. My husband and I watched only one show a day because we wanted to savour it.

Sam:

That sounds good. You want to stretch your hand.

Dana:

That's so good. Sorry, I'll do it that way.

Sam:

We divert.

Dana:

That's OK, so OK, so, spending time for yourself and when.

Sam:

I say for yourself, I mean absolutely for yourself. I mean no one else in your room, not your partner, not your children, nothing. If you have to go and sit outside under a tree in your yard, if you have to sit in your car for 10 minutes I used to do that I would sit in the car. Sometimes the kids would be in the car but they'd be asleep. So if I've driven somewhere and I was halfway home, I would sometimes just pull over and have 10 minutes just Just for yourself Headspace. So need that headspace, even if you sit there and cry for 10 minutes and I can tell you I did that a lot. Sometimes my only time for myself and I still think of it as my thinking time is in the shower oh yes, you know, you're sitting there under that nice warm water, everything you know. It feels good in there and it's also my crying place. Yes, great place to cry.

Dana:

Yes, the shower is awesome for that, yes, until you hear mom, where's the?

Sam:

And what else? What was the question again? What were the three?

Dana:

things Like what were the three things that you could suggest to parents that they could do for themselves to be the best parents they can be, or for their children?

Sam:

Don't over-therapise your child. Oh yes, don't think that more therapy equals more outcomes, because not just this is not just my opinion, this is absolute research. There is no correlation between a bazillion hours of therapy and the outcomes. I used to take Ben to physio every week, and it wasn't until it was about six or seven that I read this research paper that said that children with Down syndrome that do physio frequently like that instead of once a month, in a consultative fashion, walk six weeks earlier. And. I thought did I really drive an hour each way and sit in therapy and spend all of no savings? Just did I spend everything I had on doing therapy? That really didn't change anything?

Dana:

Six weeks earlier walking. Who cares? And I also think that I often say to parents could we work with you?

Sam:

Yeah, we're the best. Parents are the best therapists. Yeah, we have to. I do get a little. I understand why some families do it but, when therapy is only delivered in a school setting. I find that.

Dana:

Or when the parents. For me, it's when the parents are sitting in the waiting room.

Sam:

Well, sometimes I'm going to say there's a mix of that, because sometimes we need to do that. I used to sleep through. That was my only opportunity to nap.

Dana:

I would sleep through some of them. Good point.

Sam:

But if you look at therapy as a consulting sort of model, when you're there to learn what you do and we're not talking about doing therapy with your kid, we're just saying that when you're sitting at the dinner table, you have a conversation, you know, just shovel the food in, whatever it is that your kid needs.

Dana:

And I think what I was trying to also say is that it's important for parents to work on themselves, you know, because often I see that parents think that the problem is with the child, but it's more in the interaction, so the more parents can understand. What am I projecting on my child? What am I not accepting here? What am I wanting more of? That's getting pretty deep.

Sam:

Yeah, I'm pretty deep. I think people are going to need counseling to figure that out for themselves.

Dana:

But that's what I'm thinking. I know that would have been well beyond my capacity as a young person.

Sam:

I couldn't have done it when there were kids.

Dana:

I would love that all parents had a support coordinator and a lovely, wonderful counsellor. That wasn't too much in the.

Sam:

I think they also need a network of other parents that are further ahead than they are, as well as peers. So both yes, definitely the other thing that I didn't do until the kids were a bit older which I wish I'd done when I was younger was make friends with some adults with disability. Because, they've seen it all, they've done it all. They know all the mistakes that we make as parents because, they lived it all. So I've got some magnificent friends adult friends with disability, who are my greatest teachers.

Dana:

And now there's more groups coming out like reframing autism, and there's some really good stuff coming out where I think before there wasn't, and they've really got great things to say and great things to teach us. I really believe.

Sam:

So I think that was the second one was around the people that you surround yourself with. And then the third is really to really work towards an inclusive life, to not live in disability land you need a foot in both camps. So, as Ben with intellectual disability, his best friends will probably nearly all be people other people with intellectual disabilities. So he needs opportunities to build those friendships. And we did Special Olympics and things like that, but we went to mainstream school and we did a lot of mainstream activities as well, and I think that inclusion is a big reason why Ben achieves where it, what he achieves now.

Dana:

And the school was very welcoming.

Sam:

Look, schools are difficult, schools are hard. It is a really hard slog. There are many, many tears and many fights and many letters to the ministers and all of those things, and sometimes you feel like you just don't have the spoons to do it all, but even when it wasn't going great it was still better for him.

Dana:

And I think Kerry, our early childhood educator, she says it's not about getting the child ready for school, it's about getting the schools ready for the children. Yeah, 100%, you know, and I think if we can do more with the schools, that would be great for the kids.

Sam:

I think you do need to just let go sometimes too. You know, we had you know, we had one year I think it was Ben's year three teacher who was just well, she was revolting, she was just awful Things like all of the kids had a sticker with a balloon with their name and their birth date up on the board, but I couldn't see Ben's and I asked her about it and she said, well, he couldn't read it anyway. Oh my goodness. So, there was lots and lots of things like that, and I actually ended up pulling him out of school.

Dana:

I kept him at home for a term, until the school agreed to let him go into another class.

Sam:

But sometimes it's not worth the fight. Sometimes you do. You just say you know I don't have the energy. This is freaking, exhausting. I'm just going to. You know, the day that Ben came home and repeated back some of the things that he'd been told at school by some of the other kids not bullying, but just words that are, you know, we don't like to hear and it really threw me into a funk and I just I sat at home for four days. I bought us it was my first flat screen TV I bought then and I just sat and watched that. I watched TV for four days, just couldn't face the rest of the world, thinking the rest of the world were always going to be horrible to him.

Dana:

And we don't see much of that anymore, very little horribleness, I think, I think, hopefully, society is becoming more inclusive.

Sam:

I think schools are always going to have you know there are always some kids Well hopefully, you know, one step at a time.

Dana:

They've got the autism teachers in there and you know, at least it's starting and they've got the sensory spaces. You know there's more now than there was five years ago, even Absolutely right, you know. And I think we've got to think okay, maybe in five years time there'll be even more, you know. So I'm very hopeful, and I'm hopeful that parents, like you say, don't sit at home alone and shelter their children, but take them out. And you know, because only by taking our children out are we going to be able to educate society. Yeah, absolutely.

Sam:

That's the only way, Absolutely.

Dana:

What has been the highlight of your life so far? I know that you said Ben got on the plane this morning. What has been the highlight of your life so far of being your child's or children's parent and a business owner. Sam, oh my God, there's just there's too many.

Sam:

There's too many, I can't pick one out. I think just the fact that I have two children 50 years ago, neither of whom would probably be alive, who are able to enjoy life. I can have a conversation with them, I can play a board game with them, even when they're not verbal. You know, people go through those phases. Obviously, we still engage and we still love each other.

Dana:

You've come such a long way from being in America to coming here, right? Yes, what an amazing and you know? Would you have ever thought that, when the children you know when they were born and when you were in those court battles I had?

Sam:

an awful moment, when Ben was first born and I was told he had Down syndrome and that he had a major heart defect and he was going to be flown out to another hospital and all the hoo-ha and all the stuff, and I remember this. It was just a flash of a thought. I'll never forget it because I'm so deeply ashamed of it now. But back then I thought well, I hope, I hope either he doesn't have Down syndrome or the heart thing kills him, Like how ableist and how repulsive is it that it was more acceptable to lose a child in my head Only for that flash second. But it was instinct.

Speaker 3:

Yeah, yeah, but it's because of the ableism, it's because of these attitudes that we have in our society and I look at Ben now and I go, oh my gosh, I wouldn't change him for the world.

Sam:

Would I relieve his anxieties a little? Yes, would I take away his intellectual disability and his Down syndrome? No, because then, he wouldn't actually be Ben and I never would have understood that when they were little, no way.

Dana:

But look at your journey, Sam, and now you are advocating for this whole role. So Ben gave you such a gift? Yeah, absolutely, and I think I really really love that. You've been transparent and thank you so much for sharing what's in your heart, your journey, because I think you know people see you as a role model and it's terrifying to me, I know, I know, you know and it just it is, but it's like it's real. It's real. It hasn't just come. You know, someone waved the fairy wand and said they're Sam Payne. She's got a Facebook page.

Sam:

You know what I mean. Yeah, yeah, no, not an overnight Instagramer.

Dana:

Thank you so much, Sam. Is there anything else you'd like to add?

Sam:

No, I just. I just want to thank you for your work and the podcast and and I think there's more exciting stuff ahead with NDAA. I think there's some.

Dana:

You know, there's some scary bits and we've got to work together to make it better, and I think we have to work together. And the more podcasts there are like these, the more they will get into mainstream and the more people will listen to other people's stories and the more compassion they'll be in the world. You know, I really, I really really believe that. So thank you so much. Thank you, Sam Okay.

Contributor

Dana Baltutis

Host