REPLAY: S2 Episode 13-ADHD & Sensory Overwhelm: Identifying Triggers and Finding Relief with Rebecca Torpie [re-release]

Jane McFadden:
Hello and welcome to the next episode of ADHD Mums. Today we have Rebecca. How are you, Rebecca?

Rebecca:
I’m good, thank you, Jane.

Jane McFadden:
We are talking today about medication and trouble. Now, correct me if I’m wrong, Rebecca, you came out of the Facebook group, didn’t you?

Rebecca:
Yes.

Jane McFadden:
And what was it in regards to the post?

Rebecca:
Someone was commenting about trying to get their medication and having troubles, and I just commented about my struggles with being in different states and getting medication, and I mentioned I could do a whole podcast about this, and here we are.

Jane McFadden:
Ah, you’ve jogged my memory. I remember what it was now. And this is how long we’ve been trying to do this podcast, Rebecca, because I was down in Tassie in December for Christmas, and I ran out of Vyvanse on Christmas Eve. That’s what happened. And you can imagine staying with your family at Christmas is quite a hypersensitive, like everyone’s on emotions. We had a lot of kids all between us, and there was a lot going on, and I ran out of Vyvanse.

I had a script, didn’t think it was a big deal. I’d been to the doctor beforehand, and it was all fine, and I went to fill the script Christmas Eve, and they said, oh no, you can’t because it’s not in state law. And I thought I was going to blow my fucking fuse.

And my only option was to go to an emergency department on Christmas Eve, which I don’t know how I would have told my family because they didn’t know I was on ADHD medication. It’s a thing. And I think I was blowing off steam in the Facebook group, and you commented.

So this episode today is based on medication and travel, and Rebecca’s probably response to my rant vent on Facebook about how shit it was. And then I suppose I started thinking, well, hang on a second, how hard is this for people? And what is this really like, and what can we do to change it? So Rebecca is here. It has taken us around about nine months to do this episode, which seems about standard for me and my timing.

And Rebecca is a teacher and a mom of two young children. She’s been traveling Australia for eight months, living with neurodiversity, both mom and child, in a 19-foot caravan. I want to talk about the struggles of traveling and navigating different states in Australia with ADHD and medication.

This is going to be really exciting. Let’s kick straight off, Rebecca. I wanted to just get a bit of a lay of the land in terms of how long you’ve had ADHD and how long you’ve been doing the whole pharmacy thing, et cetera, et cetera, with kids before we get started.

Rebecca:
Yeah, cool. So I have a bit of an interesting ADHD diagnosis journey. So it actually goes way back to when I was in primary school. I reckon I was about eight or nine, and my parents actually sent me to the doctors and went through a process of getting assessment for absence seizures. So they thought I was zoning out a lot. I was not paying attention. I was like vacant, like no one was there.

And so they went through this process. I went to a specialist. I had an EEG. That’s the one where they put all the sticky dots on your brain, on your scalp, and they look at your brain waves. And so it came back that there was no issues with absence seizures or any seizure activity or anything.

But what they did say is that I had an overactive left side of the brain. Now, this is in the 90s. And so ADHD was sort of just a thing for boys. And what they said is that it could be supported with stimulant medication, though. Ironic, right? And there’s that idea of the left versus right side of the brain. And I mean, ADHD, there are notes about the left brain, right brain dominance. And one of those things is ADHD and ADD, as it used to be called.

So it’s likely that I actually had what we now call inattentive ADHD back then. But my parents being trying to do the right thing, and they didn’t like the idea of stimulant medication back then, they said, no, thank you very much and moved on. And I actually only found out this information as an adult. I remember doing the EEG, but I don’t remember them actually being told that information because I never knew.

So fast forward many years later, struggled through university, all those things, and had kids of my own. My son got diagnosed with ADHD when he was about four or five, I think it was. And yeah, he had the diagnosis and then COVID hit and everyone was starting to struggle. There was a lot of information out there on social media, TikTok, all those things.

And it wasn’t just that, it was actually an argument that my husband and I had about our son. And he said, oh, it probably came from you. And I’m like, you’re probably right. And so I looked into it, even though he actually has more ADHD on his side of the family, ironically, I looked into it and I started reading because this is 2020 and this is where all this information was coming out. And I was like, oh my goodness, that explains me so much.

So I started saying to a few people, I think I want to get assessed for ADHD. And I did, and I went through the process and got formally diagnosed as an adult in 2021 at 31 years old. So yeah, it’s been a journey still. I’ve been trialling different medications. I still don’t know if I found that sweet spot, but at the moment I have no ability to work through that because I can’t get my medication while I’m travelling. So I haven’t had medication in basically since December last year.

Jane McFadden:
Oh my God. Okay. So let’s clarify straight up what medications you are dealing with on the road. Like what ones are you looking to get?

Rebecca:
Vyvanse, both for my son and I. So my son’s on 30 milligram, he’s just gone up to 30 milligrams and I’m on 30 milligrams as well.

Jane McFadden:
Okay. So you’re chasing—

Rebecca:
He was on, sorry, he was on 20 milligram and then, yeah, we’ve just put him up to 30.

Jane McFadden:
Okay. I’d love to go there, but I’m going to hold myself back slightly for a moment. Okay. So people are probably wondering, because the first thing I thought of was when you said you didn’t have any Vyvanse, I’m very attached to my Vyvanse. I petitioned the government on Vyvanse. I talk about Vyvanse all the time and I advocate really strongly for people with kids with Vyvanse.

Sometimes if they’re not taking it themselves, the pediatrician will say, have a break on the weekend or the school holidays. I have a slightly different take on it as my opinion that I think brain functioning is good to be consistent every day. It’s unfair on a person to give it to them one day and not the next sporadically, especially if they’re young and they can’t articulate for themselves. That’s just my opinion.

I suppose it depends on how much they’re eating, blah, blah, blah. That’s not the decision for everybody. I understand medication breaks are important for people, but it’s very difficult, I think, to go through life on and off. My first thought is when you said you hadn’t had Vyvanse since December last year, I thought, why don’t you not go home? How is it all working with full-time travel, lifestyle, ADHD, not having meds?

Rebecca:
It’s been a challenge for sure. Like I was saying before, though, I still haven’t found my sweet spot with the ADHD meds. For me, I haven’t really got that. Some people really get that amazing life benefiting. I’m still working on that journey. For me, it’s definitely for my son, though.

I don’t think he’s had a day since he started taking his meds that he hasn’t had medication. For him, my priority has always been for him to be medicated. I’ve sort of taken the back burner because I feel like it’s less important for me. I certainly will cope even less if he’s not medicated.

Jane McFadden:
I agree. We had the same situation here in Queensland. We couldn’t get any. I had two kids. I was like, well, I’m never going to get any because I’ve got to do two before me.

Rebecca:
Yeah, totally.

Jane McFadden:
If you’re a teacher, do you work on the road? How does it go?

Rebecca:
No. I haven’t been working. My husband’s been taking long service leave and leave and all that. He’s just finished up with his job. I have considered doing some work on the road, but it just hasn’t… I don’t think it’s really benefiting us. I might look into it in the future if we want to do a bit more, but at the moment, I’m looking to work. So that does help.

Jane McFadden:
Is that because you’re on a 12-month trip? Or are you living on the road permanently?

Rebecca:
Yeah, that’s the plan. Yeah. So the plan is 12 months, but we’re looking to potentially extend that. But we certainly have moments where we’re like, let’s just pack up and leave. Our backstory is actually we’re from Victoria originally, and we’ve sold everything up. We’re planning to move up to Queensland. And so we’ve taken this 12 or so months to get up to Queensland by very long, unique way, which is actually we’re not the only ones.

There’s actually quite a lot of people on the road that have sold up and are looking for a new location to find as home. So it’s interesting.

Jane McFadden:
Oh, that’s so funny. I went away in the van with my kids. We were all… Oh, actually, I was diagnosed, but I didn’t think it was a big deal, air quotes. So I didn’t bother with medication because I didn’t need it, which is so ridiculous looking back.

And then all my kids were undiagnosed and it was just neurodivergent, crazy caravan life, which was really tough actually. And we went from the Sunny Coast because I was open to moving. And then we went the whole way around and we were like, we’re just going to go back to the Sunny Coast. We just love it there.

Rebecca:
Yeah, that’s so cool. Yeah, I’m looking forward to finding a new lifestyle up in Queensland eventually when we get there. But I guess getting back to your original, we had the same situation. Our very first challenging medication came about in Tasmania actually ourselves.

So prior to this big trip last year, we went to Tasmania for a month in our camper trailer and similar situation. I had intended to get an extra dose of his before we left, but everything was crazy in the lead up, didn’t get to, took his script over there. We only had like about four or five days where he wasn’t going to have medication and got over there, went to fill the script and the pharmacist said, sorry, can’t do it. I’m like, what do you mean?

I had a full meltdown in the chemist. And the pharmacist was actually really amazing. He’s like, I wish I could morally, I wish I could, but I can’t. And I was just like thinking about, we knew at that point we were going to be traveling. And I’m like, what on earth do I do next year? Like I’m going to be traveling through multiple states. Like how the heck do I get his medication?

And so he was really great and gave me some suggestions for future planning. And in the end in Tasmania, I saved some of his Vyvanse for the boat ride home. And I managed to find some Ritalin in the glove box that he’d had prior. And I gave him Ritalin for a couple of days just as that stop gap. So, yeah.

Jane McFadden:
So what is kind of the major issues for people that are unaware around travel and states and legislation?

Rebecca:
I found that each state is very different. And from my, I do have limited understanding from state to state. I’m from Victoria. My understanding is a lot of our Victorian scripts can’t be filled in other states. So far we’ve been to Tasmania, we’ve been to South Australia, we’ve been to WA. We’ve just crossed the border to Northern Territory and I’m not even sure what the challenges are yet for that. I’m about to find out.

We’ve just filled a new script in WA before we crossed the border. So I at least have a month to navigate what that looks like in the Northern Territory. But prior to us leaving, because I had this information from Tasmania, thank goodness I had already had this experience, I spoke to my pediatrician and also my psychologist and got a psychiatrist, sorry, and got special permission.

So there’s a regulate, they call it Regulation 49. It previously was called Regulation 24, but it’s now called Regulation 49. So it gives you the ability, even on these higher classification of drugs, to be able to dispense more than one at one time. But there has to be certain, I guess, rules or guidelines to it.

So I’ve got a couple here, so you can actually understand. So the maximum PBS quantity is, so you can request this, the maximum PBS quantity is insufficient for the patient’s treatment. And the patient has a chronic illness or lives in a remote area where access to PBS supplies are limited. And the patient would suffer great hardship trying to get the pharmaceutical benefit on separate occasions.

So my pediatrician saw this as we would be in remote locations, it would be very hard to get medication. And it was unrealistic for us to either fly or travel back to Victoria, duh, to get the medication. So she was able to apply for this and was able to get it. So we actually managed to get a six month subscription, actually both, so this is where it gets messed up.

So I also got the six month permission for my medication, and so did my son. And we got his 20 milligrams of Vyvanse dispensed six months at once. And I went to go get mine dispensed, it was in December last year. I don’t know if you remember the shortage, there was a very big shortage of Vyvanse December, January, I couldn’t get mine.

I went to like five different chemists all across Victoria, all the way up to like Albury-Wodonga before we actually left the border, tried to get mine, I got Elliot’s obviously. And then as soon as I crossed the border, I couldn’t get it.

Jane McFadden:
So it was like, that’s bad timing, bad timing for you to leave for the trip right in that shortage. Yeah. So hang on a second. So let’s just pretend there was no shortage. And you went to go and then you’ve got the six month grant. I actually think that’s pretty good. That was better than what I thought it would be. But if you, do you then have to go home after six months? What if you’re doing 12 months?

Rebecca:
For me, yes. So this is where it also gets a bit more complex. I’ve actually been able to get Elliot’s medication. So his pediatrician has the ability to prescribe to someone in another state. So what we’ve been able to work around the system with our pediatrician, and I have given them an address in Western Australia. I have a friend who lives in WA and I used her address.

And I said that that was my address. And she was able to, through telehealth, do our appointment and prescribe to that address. And I’ve been able to, while I’m in WA, get his dispense because our address is in WA. However, unfortunately, this is where it’s so complex. My psychiatrist cannot prescribe in a different state. He can only prescribe in Victoria.

So I tried that option for myself when I was like, you know what, I’m really, I’m struggling. I really would like to get this medication. And yeah, he couldn’t change the address and get it changed to WA and I couldn’t get it dispensed to. So the only other option, they did actually give me an option of potentially getting somebody else to dispense my medication on my behalf.

But then it becomes a whole new complex thing because you’re posting, I had six months worth there, trying to post six months worth of medication via the post. Like, I don’t get the logic. Like, you know, they’re saying, you know, I can’t dispense, I can’t get a script in WA, but your friend can go pick up six months of these, you know, highly class, you know, class drugs and send them via post to you. That’s okay.

Jane McFadden:
That seems weird. And then, so what if, what if it got lost? What if your friend took them? What if it was a friend that doesn’t know very well? Like, let’s say, right. And then you’ve had six months dispensed. I bet you don’t have it. So you have to wait six months because it’s been stolen, basically.

Rebecca:
Yeah. They did stipulate you would have to have like someone very close that you really do trust, obviously. Yeah. And it’s not, that’s not the idea. That’s right. That’s right. I really problem solved all those, these issues before we left with this trip. And I’m grateful that we had the six month medication because it brought us a bit of time for our son.

Because a lot of people would have left and not known. They would have just left blindly and gone, oh, here I am. I’m now in Adelaide.

Jane McFadden:
100%. And there’s no meds.

Rebecca:
Yeah. So some people, I have spoken to some other people who have traveled as well, and they’ve done a similar thing. So they’ve gotten one month dispensed at a time and then get it posted. But when you’re in remote locations, like, you know, we’ve been up in the very top of, you know, Northern Territory, we’re up in Northern Territory now, but in Western Australia, and the post takes like three to four weeks to get there.

Like, you know, even Express would take well over a week to get there. So, you know, if you can’t dispense, you know, there’s that rule of you can’t dispense a certain amount of days before your next one’s due. If you have to wait till that, get someone to dispense it and then post it, you’re still days without medication, which is what my fear actually was, even around medication.

I’m not going to lie, you know, it wasn’t, you know, the probably the best thinking, but I even thought at one point, if I could get my medication and dispense it to get, you know, dull it down for my son, to get him through any days that we didn’t have medication, that thought crossed my mind. If I had some of my medication to give him, like, I would do that. I would prefer to go without than to have one of my children go without and then have them with me 24-7.

Jane McFadden:
That’s a hands down, but I think it’s almost better, correct me if I’m wrong, to go without. I think it’s almost better to just go without for a whole month than to like be on, off, on, off. That would do my head in.

Rebecca:
Yeah, so I haven’t, yeah, for me, I haven’t had any medication, like I said, since December. I don’t know when I’m going to get it again, because now I have to forward plan because we’re moving states and I’m aware of hearing other people’s stories of the challenges of, you know, having, I’ve been diagnosed in Victoria, but then if I’m going through Queensland, some people have to get re-diagnosed in different states, which is a whole nother challenge.

Jane McFadden:
Yes, yes. And I noticed somebody else wrote in the Facebook group about that because they were changing psychiatrists and then they had to go through a reassessment, which they didn’t want to do for like time and just like mental health. They just didn’t want to go through it again or also be told they don’t have it and the expense.

And it’s interesting because I have had a similar situation with a person that I see by telehealth who I don’t really recommend if I’m honest, like he’s not great. The reason that I stay with him is because what’s the alternative? I have to get re-diagnosed. So I’ve looked at changing and then they said you have to go through an assessment process like to grant. It’s like this is ridiculous, like you’ve got my bloody letters, you’ve got all the stuff there.

So then yes, I know going to Queensland there’s, you often have to get reassessed. So I’m at the point now where I’m wondering whether I just start that process now and try and deal with it on the road and then try and get my medication. I was doing okay in quotation marks at the start of the trip, but I think the more it started, you know, it stopped feeling like a holiday and it was everyday life and you have to do everyday mundane things like the shopping is so complex because every supermarket you go into is different.

It’s laid out differently. The products are different spots. Sometimes you can do click and collect, sometimes you can’t. So sometimes I have to go, a lot of time I actually do go into store because I also use that as my time away from the kids as a break to get some downtime.

But simple things like that take a lot more brain space. When you’re in remote areas, for example, you have to do shopping for like two or three weeks or you might not hit like a Woolies or a Coles that has, you know, your familiar good products that you know. And so you have to really think that far ahead and plan and try and fit it all in the caravan on top of that. And that’s when I started really going on really struggling. I feel like having my medication would really help this process.

Jane McFadden:
Yeah. And there’s also the like anxiety around, like my kids are very specific with what they’ll eat. And that’s not great because food doesn’t last that long. And what you’re talking about, like two or three weeks, we had the same issue.

So we would just run out of something because you can’t buy enough of it because it would spoil or whatever it is. Or everyone would eat all the good stuff in the first week. Then you have two weeks to go and you’re just on noodles and stuff and everyone’s freaking out if there’s no access.

So if you make a mistake in that moment, it’s got a big impact.

Rebecca:
Massive. And again, too, like if I, you know, I try to write my lists and I try to go through, I’m notorious in, before travel always, I’ve always forgotten something, even if it’s on the list or I haven’t made, I haven’t remembered for it to go on the list. And so when you’re done your big shop and then you’re traveling like an hour to two hours away from the shop and you don’t have access to a shop and you’ve forgotten something like that’s so problematic.

Jane McFadden:
Yeah. So let’s go back for a moment to the why. Like why is it so complicated? I don’t get it.

Rebecca:
To get medication?

Jane McFadden:
Oh, sorry. Yes. To get medication. Why is it so complicated? Why the government made it like that?

Rebecca:
I don’t know. I wish it wasn’t like, I really do. It’s not even just medication that the government makes things difficult, even with my teaching degree. Right. So from state to state, I’ve looked into doing teaching, but I have to jump through their hoops. I have to get mutual recognition. I have to pay their registration fee.

I feel like the government, yeah, really undoes us as a country because they have different rules and regulations in different states. And it would be so much easier to streamline it, streamline it, to have Australia wide things and make it so much more accessible. I understand that this classification of drug is challenging and I get that there’s a lot of mistreatment and misuse and all that.

But surely there has to be a better way than me trying to illegally, you know, feed my son my medication. That’s not even supposed to be for him, you know, as an option. I didn’t do that.

Jane McFadden:
That’s what it ends up doing. I agree. It forces people to do things that are really not great because they’re desperate and they’ve got no way of doing it properly, air quoting properly. But I see people complaining and I complain myself too, all the time in their own state, in their own house, struggling to get medication.

We previously, we were taking, well, I still take Vyvanse, but my kids were on Vyvanse and we’ve kind of moved a bit more onto the Intuiv, which is that non-stimulant ADHD drug. One of the reasons that we did that was because the Vyvanse shortage was doing my fucking head in. I can’t stand it. And also the, you know, the coverage is only kind of 8 to 12 hours. So you’ve got kids that are very much needing it all the time.

I don’t need to tell you that you’re like chasing them around in the morning, like, let’s get it in, let’s get it in. And then you’re dealing with the other end. So that was one of the reasons we chose to move to Intuiv. But I really felt this sense of relief when I did that because I thought, oh, this is going to be great. I’m going to no longer feel like a criminal in a pharmacy.

I’m going to be able to track it better. They’re going to give me lots of tablets and I’m not going to be in this position of like stress constantly, right? No, that didn’t happen at all. The Intuiv, which is a drug that you cannot make anything out of that I’m aware, is under the same stipulations. So, okay.

So we’ve got four of us in our family on that, all on different scripts, all on different times, all on different doses. So whenever I turn up to the pharmacy, I have no idea of how many I’ve got. How many is in the packet? Like, I don’t fucking know.

If everyone’s on the similar looking tablet, right? And it’s like three of them are on one milligram or whatever it is. I’m obviously not going to go to that kid’s box. Like who, what ADHD person does that specifically from each box and then counts it and remembers it and goes to the pharmacy? I’m like, I just go through one box of one milligram for one kid or whatever it is.

I don’t even look at the names. And she’s like, can’t fathom that I don’t know. And I’m like, how can you not fathom? I’ve got three kids in this pharmacy running psycho. Why would I know?

But I just can’t even fathom trying to do that with an address and getting it posted with the delays. I couldn’t even figure out like how to get toothbrushes from Kmart when we were in caravan trip, let alone what you’re dealing with. I can’t get over it.

Rebecca:
Fortunately, we have the benefit that only technically one of us is on medication because I can’t get by him. So I have actually had to count out his medication to then determine whether we have enough to get to the next place that we’ll have a pharmacy. Because there’s towns that are so small, they don’t have pharmacies.

And so I recently did that. I counted out how many we had left before we crossed the border, because we only had, I think, four or five before we were about to cross the border. So I said, I’ve got to go to this town and get it like today. And if I forgot, man, I would be in trouble now because I think he’s just about to start his new box.

And I have no idea yet what that Northern Territory challenge is going to be. Hopefully, it’s the same and I can change the address and make my address now in Northern Territory and it’ll be okay. But I don’t know yet. And so there’s been times where I’ve had to literally count out his medication and then figure out if I’m going to be in a town that has a pharmacy to make sure I get the medication. And then hope that they actually have it too.

That’s the other thing. And thankfully, thank goodness, we haven’t had that issue since December where that was there. They had the shortage. Every pharmacy that I’ve been to has had it.

Jane McFadden:
So for people that aren’t traveling long-term, let’s say they just go, I’m going to go to Sydney for two weeks. I’m going to go to Melbourne. And they just leave, assuming that there’s pharmacies down there. I’ll take the problems. And they get faced with this out of nowhere. It’s just basically, you just got to figure it out when you get stuck.

Rebecca:
Yeah. You really have to forward plan and make sure you don’t do what I did the first time in Tasmania and think that it’s okay to fill your script. You have to go to see your specialist, your psychiatrist, your pediatrician, whoever it is, and get them to give you the written permission to get an extra dosage. I think usually an extra one bottle is not as difficult to get in those travel circumstances. So when you are traveling for a shorter amount of time, they’re more likely to give you that extra one month.

Beyond that with the regulation 49, I think it is a bit more complex, I believe. I don’t know what the process is for them. I think they have to ring up and talk to someone and essentially apply for it, I suppose. I’m not really sure for you. There are ways around it, but you’ve got to be proactive because if you’re not, then you’re stuck in the middle of nowhere without your medication.

Jane McFadden:
So let’s just play this out. So let’s say I’m going to go to Sydney, let’s say at Christmas. Let’s say that’s potentially, we may go to Sydney for Christmas to see my hubby’s family. We’ve been to the paed now and she’s given us a script until March. So if I go anywhere between now and March, because I can only go month to month, then I have to book back in with her before the trip, ask for an extra box, hope that she says yes, pay the fees. If I can get in, is that the steps?

Rebecca:
Yeah, I guess. Yeah, I think you would. Well, I mean, I emailed, I would email my paediatrician. I have the access to be able to email her. I don’t know whether she would make me have another appointment. If you’ve had those appointments, they might be able to give you the special permission via a letter or an email without actually going face to face.

But that may be the case for some people. Some people might have to rebook in another paediatrician or another psychiatrist appointment to get that documentation, to get the permission, because without the permission, they can’t do anything. The pharmacists have their hands tied behind their back.

Jane McFadden:
So you have to be aware that there’s a problem, which no one really talks about. Plan for the problem. Book in. I’ve had to do like a bit of a funny repeat script thing before with the paed. And I was a bit, I’ll say, annoyed because she made me book in for telehealth and I had to have my kid with me. And I was like, why? To get the Medicare rebate, apparently.

Then I had to pay an out-of-pocket for this 15-minute appointment. And then in the end, I was like, is she really going to read me? Like, this is a waste of time. And then she rang me and she’s like, hello. And I was like, I’ve already emailed. I just want the repeat. I just, I can’t remember what it was. And yeah, I had to, it was a two-minute phone call. I paid for a 15-minute consult.

I had to beg for the appointment for this tiny thing that was actually an error from her, with her admin, because we were out of meds. So I’m just trying to imagine the load on the ADHD brain, especially you’re not even medicated, to try and figure this all out, to get access to something that you legally can have.

Rebecca:
Yeah, it’s pretty wild. I, for me, I would have to put a Bedouin reminder messages in my phone because I would forget. And that’s how I forgot in Tasmania, because I actually kind of thought about it and thought I should probably try and get the permission to get an extra box, because I have some limited knowledge with the challenges of this classification of drugs.

So I thought it might be potentially a little bit challenging, but I didn’t think that they wouldn’t be able to give it to me. So yeah, yeah, you have to make sure you don’t get too busy and forget to get that permission to then get the script before you leave. It’s a lot. And then you’re banking on the fact that wherever you are is going to have some and another box, because that may not happen when you’re remote.

Jane McFadden:
Yeah, that’s true. I would probably recommend trying to get out home before you actually travel. So sort that out and speak to your paed, or your psychiatrist, whoever is prescribing for you and say, we’re going away. I need an extra box or I need an extra dosage. Can you help me get this sorted? And then get them both filled at the same time before you leave.

It actually makes me feel fatigued thinking about it, to be honest, like in terms of, I’m just like, that is just, and especially because I’ve travelled too. And I’m like, by the time you book the caravan site, all the days when we travelled, it was COVID-y, like it was just like COVID-y, it was kind of finishing. And we met everyone’s on the road, there was no caravans, like there was no availability. So we couldn’t get in anywhere. So everything was just forward planning, forward planning, forward planning, just felt exhausting.

Rebecca:
Yeah, we’re lucky. Maybe it’s because I have ADHD, we don’t plan too far in advance. It has been made it difficult at sometimes because you can’t get into the places that you would like to, or you’ve had to change your plans because it hasn’t gone how you’ve wanted. But it suits us and how we’re travelling, and we’re lucky because we are travelling for such a long period of time that it doesn’t really affect us.

And a lot of the time, I can’t think too far ahead. I don’t know what I’m doing next month. I don’t know where I’m going to be next month. So at the moment, we’re in Darwin, and we’re here for three weeks. And this is the longest place that we’ve been in one spot, which would be a nice, you know, just to download a bit of a break.

I’m excited to be able to take a bit of time to and sort out my admin, I’ve got a bunch of admin things that I need to do. I need to apply for my teaching registration again, that’s due. You know, I’ve got to sort out this medication, my Elliot’s, his NDIS plan’s about to roll over, and I’m not even sure if I’ve sent all through the documentation. So I don’t even know if he’s going to get approved or not. And when I’ve been travelling so much, it hasn’t unfortunately been in my thought radar to have the ability and the brain space to be able to do that.

Jane McFadden:
Yeah. So what would be, what would you like to see change? Like it was the world according to Rebecca, what do you think you would change?

Rebecca:
Well, right from the start, I would like to see ADHD actually not so challenging to get diagnosed in the first place. That’s where I would start. I think the challenge is hearing from other people, you know, the hoops and the barriers that they have to jump through to get diagnosis. And it’s also so different. Everyone goes to see some psychiatrists as an adult and they get diagnosed like the first session. Some people have to go four or five times before they get the diagnosis.

So I don’t think that’s fair. Like, you know, why does one person have to pay $300 a session and pay for four of those before they get diagnosis and somebody else, you know, has to pay a different fee and they get the diagnosis, you know, in one go. That would be the first thing, make diagnosis so much easier.

And then the next thing is the medication more accessible, easier to get from state to state and not having these shortages. I don’t understand why we’re still having these shortages after nearly two years. You know, obviously there is a great need for this. And, you know, if you’re entitled to have this medication, you’re entitled to have it. Someone has deemed you to be able to have this medication. It shouldn’t be such a barrier. It shouldn’t be so complex. I’d like to see everyone who is in need of this medication be able to get it.

Jane McFadden:
Yeah, I agree. It’s just so tricky because the medication is so difficult to get. It’s all on the timers and everything. And it’s all just completely, the process is just completely not ADHD friendly. And that’s what you need to go through to get it. And then I always just think about the kids that don’t have a family member that’s able to afford a script or a diagnosis.

So for example, I had basically no ability to ever have anything correct with any of my kids until I was diagnosed and medicated myself. I just couldn’t do it. People would tell me that the strategies I knew what they were, but I was unable to implement at all. And it was only through getting diagnosed and medicated myself that I was able to coordinate to get my own children sorted out.

So I always feel for the kids that the mom doesn’t have the funds or the time or the energy or the education, the knowledge that that’s what they need to do. And then they don’t ever get their kid diagnosed and medicated and sorted out. And again, it’s not about medication all the time, but because then I just think they just get so disadvantaged. And that should be the same for everybody.

Rebecca:
Yeah. And I know some people like I’m sympathetic to the parents that are questioning whether stimulant medication is right or any type of medication is right for their child. It’s such a tricky thing. At the start when Elliot got his diagnosis, I was very much on the fence and I didn’t really want to give him medication, but it became so volatile.

It became so hectic that it was basically our only option. And then I actually saw the impact that it had. And it was during COVID times and he was at school and I have a writing sample and I’ve kept that writing sample from two days apart where he was medicated and when he wasn’t medicated. And the difference was astronomical.

Like he had beautifully formed sentences, like six sentences of writing and a beautiful picture. The next day it wasn’t on his medication. And this was because we were about to change medication. So to stipulate, I just didn’t… it wasn’t just because I didn’t give it. Our pediatrician suggested that we have like a couple of days break and then start on a new one, which I don’t agree with anymore, mind you.

Jane McFadden:
Because something’s working, so then you stop it. Sorry.

Rebecca:
Yeah. Well, no, it was also because I couldn’t fully see the effects of it. We were trying to change to a different medication to see if we could extend his longevity because it was Vyvanse and we were missing a bit in the morning and missing a bit in the afternoon. We’re trying to see if something else worked.

Anyway, we stopped the medication. He did this writing and it was like—he couldn’t stop writing, I hate mom, for one, because we were at homeschooling at that like remote learning at that point. So I was the teacher and the mom and everything. And the sentence that he wrote was, the dragon was briefing fire, is what he got out. That’s the only thing. And his dragon looked like a chainsaw.

There was scribble all over his book where it was a big mess. And so I’ve got those writing samples and I hold on to them and I advocate for other kids because I’ve worked with other kids. I’ve had a girl that I’ve tutored and she’s got a diagnosis of ADHD and her mom has the script in the drawer. And I’m like, why don’t you get it?

I feel like it’s so important. She’s just going to keep getting more and more behind and she’s going to forget and forget and forget and find it harder and harder as she goes on. I was working on—she’s grade four and I was still working on basic like addition skills because she just couldn’t get those concepts. And the gap gets bigger and bigger.

So I feel for those people and I’m an advocate now because I’ve seen the difference that it makes to my child. And he has been successful in a mainstream school environment because of the medication, because they reach the rewards of the medication. It’s been for sure hard because you get the mornings and the afternoons where the kids just like rip and they don’t have their medication in their system anymore. But yeah, I’ve seen the benefits that it’s had in a school environment and for the benefit of the child. And hopefully one day I’ll get the benefit too.

Jane McFadden:
One day. But yeah, I did an episode from skeptic to advocate where I had the same experience. I will not do that. My kid doesn’t need it. They’re not bad enough, air quoting all that. But then when it was explained to me about neuroplasticity and I actually tried it with them, I feel like there’s a lot of people, myself included, that held up that judgment.

I’m not going to do that. And then once I did it, I couldn’t believe that I’d left it for so long. But anyway, we will continue on. I do want to ask one last question. Are there any tips or tricks for traveling that you would like to share before we finish up?

Rebecca:
Yeah. So a lot of it’s just that plan ahead for your medication. What we just talked about, make sure you speak to your healthcare people, the sites, pediatricians, whoever to get that special permission. Ask about that regulation 49, ask if it’s a possibility to be able to get that. So you can not be without your medication and be prepared when you go to remote areas.

If you’re going to travel long-term like we have, you might have to do the whole counting of how many tablets have we got? Can we get one now? I guess the benefit, I suppose in some ways, because we are going to different pharmacies, they don’t really have record of when we last had it dispensed. So we have had moments where I think we’re technically outside of that window of how many days you’re not supposed to get it dispensed, but they don’t have record of that. So it hasn’t really mattered too much.

So that’s been a benefit, I suppose. There was one pharmacy that wrote on the actual box or the script, but I don’t take my medication in and show them. So it didn’t even make any difference. So be prepared when you go to remote areas, make sure that you can have a pharmacy that will have it. That might mean bringing up ahead, and I have done that too. I’ve rang ahead and said, hey, if you’ve got two options, you might have two small towns to see one, you know, they might be like a few minutes away from each other, ring them up, see if they’ve got medication before you go in.

And I think for us, it’s also about trying to access support while we’re still traveling. At the start, we didn’t, you know, we cut off earlier had like speech, OT and psychology and stuff and that sort of cut off. And I was in a brain space where I wasn’t sure if it would work for us on the road. But I’ve just recently started making the decision that actually, it might be good to have that extra support. So we’ve just started going through that process of getting a new psychologist.

Psychologist, I’m trying to remember the right word. Psychologist, for him, maybe try and do some stuff online. And I’ve gone through, you know, your, what’s it called?

Jane McFadden:
Your Body and Mind.

Rebecca:
Body and Mind. Thank you. It’s written here somewhere. Body and Mind, we started that process. And I didn’t even know that that existed until that podcast a few weeks ago. And as soon as you said that, I was like, great, this is a great opportunity. We’re headed to Queensland, it might work face-to-face potentially in the future. I started the process and we’ve just recently had our first appointment, which has been really good.

And I think prioritizing time for yourself is a massive one. So for me, even though it kind of sucks because I hate doing the shopping, but I go in store and do the shopping. I put my headphones on, I listen to a podcast, quite often ADHD mums. And I shop around and it gets rid of all that stimulus, but I get a bit of a break from the chaos of the kids and dealing with all that.

And we make sure that we have allowed days, like the downtime, because there’s so many days where you go, go, go. You’re trying to see all these things and the kids get to a point where they just lose it. And we just had that recently. We’ve had a big couple of weeks. We had a big day of travel, not yesterday, the day before we were in the car for four and a half, five hours of traveling. And the last two days have been quite horrific behaviour-wise. They’ve been waking up through the night. We’ve changed time zones. It’s been hectic and having some downtime where the kids can choose what they want to do, but also you have no plan. You don’t have to go see that thing. You don’t have to go do this because you need them.

You still need to clean your caravan. You still need to catch up on washing and you need those days to be able to do those things. So I think, yeah, it’s really important to try and get time for yourself and have down days.

Jane McFadden:
Yeah. So if anyone’s listening to this and they’re thinking to themselves, is caravan life for me? And they’re an ADHD mum, what would you say to them?

Rebecca:
It’s so tricky. We’ve met quite a few other families that are traveling, whether it’s short-term, long-term with kids that have ADHD or other neurodiverse challenges. It’s been more than I actually thought there would be. It is so challenging though. And don’t get me wrong, there’s been times where we’ve been like, oh, I’ve had enough. Let’s just beeline up for Queensland. Like I need that routine because you’re with them 24-7.

And it’s just so hard to get there. There’s no escaping them. You’re their teacher, you’re their parent, you’re their entertainment sometimes. But then you get moments where you’re with other traveling families and the kids make good connections and they entertain themselves. So you get a breather at times.

So I think, yeah, it’s not a one size fits all. You know, you really have to think about how you feel when you do go on holidays, but then think it’s not a holiday because it’s not. And it’s actually a pet hate when people go, how’s your holiday going? I’m like, it’s not a holiday. It’s our lifestyle at the moment, temporarily.

We still have the same challenges. You know, Elliot still has outbursts. He still tries to kick dents in the car and, you know, break things in the caravan because he can’t control his emotions. I still have meltdowns and have moments where you yell at your kids and then you’ve got people around you watching and listening. And yeah, it’s pretty full on. But I don’t regret traveling.

I have met some families though that have neurodiverse kids and they have given up partway through. But if you are wanting to travel, you know, for longer term, you know, I’d suggest having a trial run, especially hiring, you know, if you want to, before buying a caravan, hire a caravan, give it a go for a couple of weeks, see if you can handle living in a small space with your family and not kill each other.

That’s always the goal. It’s like, just get out of it, like alive and like still married or still together with your partner and like everyone’s alive.

Jane McFadden:
Yeah, that’s yeah. And if we get to see amazing parts of Australia, that’s just the bonus, hey? Well, thank you so much for your time, Rebecca. I really appreciate it.

Rebecca:
You’re welcome, Jane. Thank you for having me. It’s been great to share our experiences.

Jane McFadden:
Oh, definitely.