Atypical Podcast Youtube Thumbnail episode 5
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Hey. I feel like it's been so long. Yes. Welcome back to the Atypical Life podcast. It's been- A while. A while since our last episode. We've had lots going on. Lots happening. We had a plan, had a schedule of all the things that we wanted to talk about. Of course, it didn't happen. Life happened.
Life- Life is, keeps happening. But yeah, we've had a gap. Do you wanna talk about why we've had a gap? She left me. Not really. I had to take some time off for [00:01:00] surgery that was, in the long run, very beneficial for me. So that was a long, nearly three weeks of surgery, and then recovery, and then slowly easing back into life.
But feeling good. I'm feeling good. I'm feeling better- ... which was the goal, yeah. I'm back. She's back. So excited she's back. But yeah, but you took three weeks off. ... And- Obviously left you without me. Yeah. That's the funny thing that people don't really consider, like- ... 'cause, and I guess people probably don't realize this either, is we direct employ you- Yeah
As our full-time family support worker. We, yeah, we don't, you don't come and support us through [00:02:00] another agency, so it's not like they can just send someone else. We don't have anyone else that steps into that position, and, when we direct employ, and this is, there's pros and cons to direct employing support workers.
But one of the, I guess the downside is that we only have a certain amount of funding, but we also pay you your leave and sick leave. So there's no extra funding to pull from to pay someone else to step in and do what you're doing, so usually we try and align obviously our time off at the same time.
Yep. So we usually- Both of us- Yes ... have a rest from life- ... at the end of the year. But obviously life happens, and you had to go and have your surgery, and now you're feeling good, and that was just one of those things that just happened. Yep. No, it was bound to happen. We knew it was going to happen. We just didn't know when.
Yep. And obviously it happened when [00:03:00] Of course. Everything else was happening. I left everything else. Yep. Didn't stop. You had stuff happening for you. You were going through surgery and you were recovering. And- ... as life always hands us, equally stuff happened for us too during that time. So we- We're subtly checking in on each other.
Not really telling each other the full story. Yeah. You're like, "How are you?" "I'm good." "Just don't worry, I'm just dr-" Just drowning ... just drowning. Yeah. "But don't worry. It just get better. Come back." Yeah. Please come back. Anyway, so glad you're back. I'm so glad to be back too. Like- Yeah ... though, like I've wanted to do the surgery.
It was also stepping away from you guys was hard, and recovering was [00:04:00] hard, and- I think what was really beautiful, like you were just talking about earlier though, was that even though you weren't around, the kids still m- kept- ... connection with you. They would send- That was like- ... you messages or they would ring you, and- Keeping me going.
I was like- And I didn't even know it was happening, so it wasn't like, "Oh, you guys should do this." No, I was like, you were here, and I was getting like messages from the kids and then like voice messages. "I miss you." I was like, "This is the only thing keeping me going at this moment." Not letting you forget about us.
Never. You're recovering from surgery, but pay attention. Chelsea drew the character. Second favorite. Oh. In case people are wondering what we're talking about our daughter Cooper, she loves to draw. She's quite the little artist and she has a million different characters. Sometimes characters are from her books that she writes, sometimes they're new characters.
And often they're the same character, but lots of [00:05:00] different versions of them. So one looking- Different facial expressions, different... If they're doing something different. They've got a little friend on their shoulder. Yeah. They've got like cheering little paddles and stuff, so I think, yeah, they were counting the different characters.
So she's got one particular character who's a giraffe. And I think she... They were counting, 'cause she prints them all out too. So there was like 50 different versions of it. But anywho, so every single day she will send messages to everyone. So if you're on her- It's like- ... messenger list, apologies
it's like 40 different images. It's 6:00 AM in the morning. Pick your favorite. If you don't reply in five minutes Pick your first favorite. Pick your second favorite. Pick your third favorite. If you don't reply within, like I said, a timeframe- ... she's still here. Obviously. It's a fine line between teaching about social etiquette.
Not everyone has to reply to you straight away, but also yay, communication. We're building our functional communication skills, working out we can [00:06:00] send messages to people. She's working out how to tag people. Yeah. We're getting really tech-savvy. Changing names of the group messages now. I was...
Yeah, for three weeks I was away, the group chat I was in was probably changed about 20 times. The kids going back and forth "No, I don't like this one. I want this one." Oh, funny. Anywho, so she wasn't letting you forget. Messaging you every day- You never forget ... about your character. And now that you're back, it's "Let's do it in person."
I sent you a message. Yeah. Chelsea, I sent you a message. I'm waiting for you.
Oh, it's so exciting though, 'cause these... she is nurturing her relationships- ... and friendships with people, and using that as- ... her connection piece to start the conversations. But also her development of characters is so incredible. Oh, my gosh. They're, like, so many different expressions and situations and- Yeah.
And sh- [00:07:00] each of them have their own personality likes and interests. Which is part of what we've been doing in homeschooling, is around character development, but also learning, about different personalities and likes and dislikes. But they're, yeah, they're quite cool little characters.
There's over 100, and there's zebras and elephants. And I was over there the other day, and we went through all of them, and she told me every single one of their names. Probably like nearly 200, and there's 200 different names. Character library. She expects you to remember them too. Which one's this one?
Yeah. I'm like, oh. But, yeah. So that's what we've been up to- Yeah ... the last few weeks. And obviously, yeah, it's, it was challenging not having you. And navigating extra things that just happened to be happening in the background. But I guess that's, a potential- Risk of the future as well. So this week they've been talking about,
not just this week, but the last couple of weeks we've heard lots of media updates around the NDIS, [00:08:00] and NDIS reforms, Thriving Kids, what that's gonna look like. Obviously causing lots of worries and concerns- ... amongst our community. And I guess that's challenging for me for both sides of the coin.
Being a provider, thinking about, okay, what does this mean for business and the families that I'm working with, and how do we proactively, one, either gather evidence to support and show that ongoing support is needed, but also, potentially capacity build as much as we can- in case there is a reduction. But then on the flip side of that is obviously a lot of our support that we have through the NDIS, through you, enables us to participate in life as we currently do. Yep. And if any of our plans are to change or our supports are to change, that's going to significantly change [00:09:00] things for us as a family, but also our work that we do, and obviously the families that we support as well.
Because it all is like a little life cycle, isn't it? Ecosystem. It all impacts the other one. And there's lots of families lots of businesses at the moment that are in that risk management stage. We've been doing community consultations this week for our region to, make sure our voices on the ground are being heard, and that families have a say, hopefully, in what Thriving Kids particularly will look like on the ground, but also what they need supports to look like and what that impact of less supports would look like- for them living here in the regions. And it's pretty scary. We've already started to see some of those changes impacting new plans coming through and families and the supports that they're accessing. And there's a lot of obviously concerns and, [00:10:00] that's what people I think forget is that it's, we're not just, we're not just reducing supports, we're actually reducing access to community.
We're reducing capacity of families to navigate systems, so it's a whole knock-on effect. But yeah, so businesses are risk managing at the moment. They're trying to pivot. Do we get registered? Do we not register? Do we diversify our income? Do we continue in this space? Et cetera, et cetera.
Families are also risk managing at the moment. Yes. They're risk managing in the way that they are- gathering evidence of functional impairment and long-term disability. They are risk managing in terms of what happens if I lose support. W- what do I do? Where do I go? How do we access? So there's lots of different levels of risk managing and I, and I wrote a blog post on this last night, as I do [00:11:00] late at night in bed about how it just, it's so f- I didn't say this in my blog post, but it's so frustrating because at the end of the day, if inclusion was embedded at the core foundations- in community at every level from marketing to access, intake to, our sporting clubs on the ground, if inclusion was embedded, then more support would be available. Yes. Families would have more access to community, more access to- More spaces to go to ... mainstream supports, more spaces to go to. And not feel so alone in it as well because life.
Yes. Life is hard. We need people around us to share that load with- Yes ... to help us along the way. Inclusion is good risk management. Cannot say this enough. So frustrating. One of the other things [00:12:00] that I woke up thinking about this morning This is what happens is just like it consumes you. It's not just like a, "Oh, yeah, this could be happening."
You- Budget cuts are happening. It consumes you as a family, as a service. You go to sleep thinking about this. You wake up going like this. You go through life thinking about this. Yeah. It's all intertwined and I'm sitting in rooms listening to families and, n- simultaneously going, "Yes, me too."
That's- yes, I know. Trying to support them but support us, while also feeling like I'm drowning. But then, like in regards to the community consultations that we're doing at the moment, it's we hope it'll make a difference. We're trying. Trying to make a difference. But- Put so much energy into it, and it could be for nothing.
But also, if we don't, then who will? We try. [00:13:00] We it's- It's, yeah. But anyway, so I woke up this morning thinking about
the how... the benchmark's always changing, but so part of the, the whole point of these NDIS reforms and potentially Thriving Kids is around- Saving money, saving resources And so I was thinking about the new access criteria, the new eligibility, and how we communicate that.
So I spend in my professional practice time writing reports for families on how their disability impacts their daily activities and how ... And making recommendations for future support. So and part of making those future recommendations is about considering, is it reasonable and necessary, or is it an everyday expense?
Is it directly related to their disability? Is it, is it not better funded by another government department? Is it is [00:14:00] there enough evidence behind it, et cetera, et cetera. But one of the other criterias that we usually tick off for the NDIS is that it's good value for money. And I woke up thinking this morning, oh, what equates good value for money?
Because the NDIS is now telling us that they have spent too much invested too much in people. They're reducing social and community participation funding. So we're to assume that accessing community is not good value for money, even though we know community connection im- has so many benefits. What is a goalpost now?
Where are they? Because if I'm recommending OT for someone, is it 20 sessions o- like 20, 20 sessions over the year? Is it 40? Is it ... Obviously, it's dependent on the individual, but to them, what is good value of money? What are they [00:15:00] expecting clinicians to do for their hourly rate? What outcomes are they hoping to have achieved within that life of the plan?
There's really no guidelines. No. We know everyone develops at different rates. They have different goals. Things change and impacts things. Work, what the hell? What? So many questions and not enough answers, which is how obviously everyone's feeling as well. It just- Makes no sense, but at the end of the day, it impacts real people, like us.
Yes.
It's ... I've spent so much time crying this week, and I'm not a crier. This is normally how I respond. I just laugh about it, but it's hard to keep talking about something that literally is life-changing, and I think that's what the hardest thing is that, the NDIS was developed for [00:16:00] people. Choice and control When really we have no choice and control because there's a little person sitting, up in head office somewhere clicking buttons- That have no idea or- They don't know us. That impacts the rest of our life. They're pressing a button and then going home to sleep at night.
Meanwhile, we've lost 15 hours of funding for the week, 15 hours of support.
And it's not just that because even, another part of our services that we offer is that parent-carer safe space support groups. Funding is changing in spaces like that as well and- You think of those families that even got a message how s- family felt understood, like- Yeah ... what happens when that space- Yeah
goes? Where are they going to? Yeah. There's so many families that have only just started [00:17:00] navigating this journey and, we support them in any way that we can- ... just by listening and providing a safe space to come. But ultimately, like we don't have any answers which makes it really hard.
I feel like all we're doing at the moment is talking about really negative things and posting about negative things and, promoting advocacy which is hard. It's talking about the tough subjects. It's putting, raising lights on things that are affecting real people. But something I'm also s- consciously trying to do is make sure we embed some bits of joy in there.
Just- We've got some things, some little stepping stones for joy moments you've got. Surfing next weekend. So excited. So and that, that's a great [00:18:00] example of things that we've been able to do over the years with the right support. Doesn't happen on its own. It happens with- ... a group of people that- are in our corner. But brings us so much joy even if it's once a year. We get to go on the boards. Get to go to sunny places. The beach. We live in a sunny place but get to go to a proper beach. 'Cause we don't have proper beaches here unless you go out on a boat. I don't have a boat. Get my skipper's ticket.
But yeah, trying to focus on the small wins as well. Which they are popping up occasionally but- Yeah Would you have a win, this morning in terms of, Aw.
Medication. [00:19:00] We've been trying to, for years. Obviously Cooper- So context, everyone. Con- Cooper received her ADHD diagnosis last year. Last year? Yeah. Yeah. End of last year. And we've been talking about medication and, wanted to make sure that she was at an age and stage where she understood what the medication was for, and that she had to take it every day, and that she was comfortable to do but she was continuously telling us that her brain felt like fireworks, and her brain wasn't working, and was getting overwhelmed by it. So we decided, we talked about the medication side and decided to go down that route. And but of course, to get the medication to get the diagnosis, got the diagnosis from psychologists, needed to get it signed off by the pediatrician so that we could then get the medication.
As everyone knows, it takes so long to get a pediatrician appointment. [00:20:00] We've been really fortunate that we've got a good priv- a couple of private pediatricians in our family network, and got the appointment quick enough, but then we had to do the health side. So usually sometimes, not all the time, but most of the time, pediatrician or the psychiatrist will ask you to just double-check blood pressure, weight ECG, and blood tests before starting medication.
So we managed to tick off a few of the items. Last one was the blood test, and was just a pain in the butt. Not going to happen. And this was one of the things that we were navigating while you were away. We'd attempted, I think, three different places for a blood test and were turned away because either people were away, or the person had gone home already, or they were too busy, "Come back another day," or we needed an extra [00:21:00] person because just because.
And then finally ended up going to the hospital to get it done. Went in, it was a big thing. We had all the, done social stories leading up to it. We'd done, had her communication device with her self-advocacy and questions that she might have. Finally got into the room to do it.
And then they couldn't find a vein. And of course, she's, so anxious already, feeling really overwhelmed by it. They tried it and tried, a couple of different people tried, and then she ended up they couldn't find it, and then just as we were making a decision to come back another day, she fainted.
And she's been fainting. That was part of the other reason we needed to do the bloods. But she yeah, she usually can tell that she's going to faint. Whereas this time, I don't think she was prepared for it, so it was quite [00:22:00] traumatic for her when she came to. And then that really impacted her for weeks after.
She's, yeah, quite worried tra- traumatized from the experience, and find- was getting just too anxious over the thought of having to go back and try again. But we managed to problem solve our way through it. Went back to the pediatrician, ended up getting the medication for ADHD, and the other barrier was then trying to get her to take the medication.
Get her to take it. Not that she, she wants to take the medication, but she d- doesn't know how to swallow, which is a really common thing for most families as well. I'm sure there's plenty that would understand that. But she... Anyway, we managed. I was really impressed because this morning was the first day we had the medication, and she thought, "Oh, I don't know how it's gonna go," but she came to me and was like, "Mom, medication."
I was like, "Yes, it is." And then yeah. Anyway, we [00:23:00] tried a couple of different ways and managed to get it on a spoon with some yogurt and got it down, and she was so proud of... It was really cool 'cause I was telling you earlier that even the whole couple of us take medication in the morning, so we're all like, "Yeah, you did it."
And it was, like, very very subtly cool, but also really normal. Like- You could tell she was, like, I guess excited, 'cause the first thing she said yesterday was, "Take my medication." Yeah. "I start medication tomorrow." I think, which she was, like, mostly excited about it because she was like, "I got the medication.
I don't need to do the blood test." "Can't make me." One day on that novelty will last "Oh, I've gotta take my medication." Yeah. Now it'll be like, "Yeah, ugh, again?" But yeah, anyway, that's a small win for the week. That's what we're focusing on. One day at a time. Yes. I guess watch this space.
There's so much evolving at the moment. We're obviously thinking, forward planning. We've got lots of things [00:24:00] happening throughout this year anyway. Lots of different things that we're already kinda working towards and planning for. Transition to high school next year for Mr. L- Everything could change overnight, couldn't it?
Who knows? Yeah. Never ends. It's just life. Still here. One day at a time. Anyhoo, so that's what's been happening for us. Us, the past, what, two months? Oh, Lord. If you don't laugh, you cry. We're back. We're back. We're back. Was gonna say better than ever, but... Still keep coming back.
That's what people say, though. A couple of people have said that to me this week, is like, "Been here before, we'll get through it again." Yep. Just gotta- Just a little bit tireder each time ... go through the trenches, go. Ugh. We'll get there. We'll just keep surviving. Hope [00:25:00] just keep floating. Just keep swimming.
Anyhoo. That's us. If you're feeling overwhelmed by it all, if you are feeling like we're feeling, exhausted, impacted, moral injury... I was gonna say something really insightful then and it- ... just left my mind. This is life. We get it. We're here. Yeah, we're here. Really do can't remember what I was gonna say.
Something. What was I gonna say, Chelsea? Leave us a comment, send us an email. Send us a message. We'd love to chat with you guys and- Yeah ... be a space where- Still can't remember what I was gonna say. Was gonna say something fun. Yeah. Can't remember. [00:26:00] Dunno. It's gone. Friday afternoon, we're tired. So tired.
Really, what was I gonna say? So annoying. That's, my alarm was just going off- Yeah ... but. I was gonna say, finally. Time for my medication. Anyhoo. We're gonna go medicate. Yeah, gonna go take my medication now. And yeah, catch you very soon. Sooner than last time. Sooner than last time.
~So annoying, I actually cannot remember what I was gonna say. I was trying to make it up for you. I was gonna make a-~
