Un-edited Podcast Transcript:
[00:00:00.200]
I didn’t know what I know, being raised the way I was. Would my son have ended up in a really bad way? Like, would he have committed suicide or would he have hurt himself seriously? Just think, there needs to be certain checks. I know that our health care system is really under the pump at the moment, but I feel like you’ve got all these children who are in a lot of difficult situations socially, medically.
[00:00:30.360]
We’re giving our kids all these different types of medications. There needs to be, in my point for my opinion is there need to be certain checks where either a doctor or a nurse will follow up with each of these kids and say, hey, look, parents, how is your kid doing?
[00:01:19.240]
Tell me about your journey. I’m interested in finding out about the time when you found out your son has autism or Asperger’s. I don’t know. What term should we use? Like I said, I’m quite happy to use Asperger’s, because that’s the diagnosis that we got from the doctor. So Eli was five years old. He goes to Tiago school in the terrace.
[00:01:40.520]
And his first year teacher I hope I can use her name. Bruna. Yeah. She has an education background in special education, and she works years with special needs children. And Eli was displaying very unusual behaviors in school. So he would get visibly upset in assemblies or when there were loud noises. When there was a change in routine, he would pace back and forth anxiously. Right. He would line his toys.
[00:02:17.320]
He had his favorite toys in class. And, you know, when they were like, first years, they don’t really do any school work. It’s all like, hey, let’s learn our colors and sing along together. But he had toys, and he would line them up, and if another kid touched them, he would lose it. It was just a full on meltdown. But there were other things. He was a bit delayed in speech as well.
[00:02:42.480]
So she sat down with my husband and I, and she said, he’s, I really want to sit down with you and discuss some of the behaviors I’ve seen with Eli because he’s a really sweet kid. I really like him, but I just think that he’s struggling in school. So we were able to get a referral to Cams. Cams is a child. Adolescent Mental Health Services. The teacher wrote up an in depth report, and we got the GP involved, and I think the school has some sort of going through maybe the minute,
[00:03:18.400]
I don’t know how accurate this is, but maybe going through the Ministry of Education, they can put in a referral for Cans if the teachers notice. Or maybe because she had a background in special education, she had hooked up to something. I don’t know how we got involved, but basically we had a referral to see Amazing Doctor at Cannes and we sat down. He got a diagnosis of ADHD and Asperger’s Syndrome or ASD, and it’s just kind of been an ongoing journey. The first few years were wonderful.
[00:03:55.400]
We were being seen by the same doctor at Cam’s facility, which is in Wellington, cambridge Terrace towards the end of Cambridge Terrace. I don’t know the street name, but it’s kind of like there’s a KFC on Cambridge Terrace and then there’s a little street that you go off and then it’s kind of tucked back in the back, little white building. We had no problems, but it was just sort of more recently that we’ve kind of stumbled into some problems. But I guess once you’re in the system and you’ve got a great connection and network and you’ve
[00:04:29.800]
got good communication with the doctors involved, I feel like it’s okay. But they did regular medication reviews every six months. He had a weight, height and blood pressure review just because the methylphenidate, I think, is an appetite suppressor. And kids being so young, you don’t really want their appetite to be suppressed and that’s sort of where we’re at now. So he’s ten, so he was diagnosed when he was five. So we’ve had this diagnosis for five years and he’s come a long way. When you found out, did you bring him directly to the GP?
[00:05:13.640]
No. So we were being seen can I use the doctor’s name? Is it okay? First name? I don’t know his last name. So we were seeing the same doctor, child psychiatrist, and he also works at the hospital, so he kind of works at CCDHB and at Cannes Clinic. And we were seeing him on a regular basis.
[00:05:39.560]
So we were not discharged to the GP until I think two or three years into the diagnosis. My son Eli was being seen by the doctor and then we were discharged into the GPS care. So when he would have a growth spirit and the dosage needed to be adjusted, we would tell the doctor. A doctor would put in a referral back to Cams and then we would get an appointment. And it used to be quite quick and we’ve seen significant delays now.
[00:06:10.800]
And like I was saying before, he’s now on a seven to twelve month waiting list for a dosage review. So did they change any process procedure or something in terms of referral is still the same. Well, so the process that I know of is being at Kim. So you see the doctor and then if everything is going well, so he would adjust the medication appropriately to what he thought would be a good dosage for Eli. And that was all based off of the teacher’s notes.
[00:06:38.600]
So his school is quite good. They take regular notes and we have regular meetings about how Eli is progressing in school. They take notes, behavioral changes, or is he lacking in this area? And then based on that information, plus our observations as parents, he would do a dosage assessment and see how it goes for a few months, come back. If he was fine, then he would discharge us back into the GPS care. And the GP, of course, can do a repeat prescription, but GPS don’t have the same access to medication as a.
[00:07:14.200]
Psychiatrist, so repeat prescription, but they cannot change the dosage. I don’t believe that they have the ability to adjust because I think the adjustment and the changing of medication is only done by a clinical psychiatrist. The GP has said that she feels that he does need a dosage change recently because he has grown. Yeah. Because it has something to do with proportion on the site. Yeah. So he’s quite tall and lanky for his age, but he’s not underweight.
[00:07:52.920]
He still eats heaps, which is great, but for him he’s tall, lanky, so he doesn’t really need a larger dose for some kids his age. So basically there was a scale in what am I trying to say? A scale that they use. So for him, he was on 20 milligrams in the morning and 7.5 at lunch because he’s on the quick release methylphenerdate. And that wasn’t working any longer. So the GP said, let’s get a referral into the pediatric department, see if they can do a review and then change the medication.
[00:08:31.680]
They came back quite quickly and they changed his medication from methylphinidate to Ritalin, the slow release. And within a week we saw significant behavioral changes. He was hitting his head, he was agitated, he wasn’t sleeping, he was pacing back and forth. He had extreme anxiety, he had suicidal thoughts. So we called the GP and basically the GP was like, right, that is a side effect, unfortunately, of this medication. So let’s take him off and put him back on methylphenidate, the slow release.
[00:09:04.640]
But instead of doing the request that we originally wanted was a dosage assessment by Cans. We were put in a waiting list to see the pediatric department at the hospital. So I went back to the GPA. I know you were trying to do us a solid here and reduce our waiting, but I don’t think it’s done us any favors. So can you put in another referral to Cannes? And because it seems like there’s only one doctor working there, which is our doctor, and because he’s working in a clinical
[00:09:34.760]
setting in the hospital as well, he’s having to share his time, and we’re on a seven to twelve month waiting list just to get a dosage review. Did they tell you about the side. Effect of that for Ritalin? No. Yeah. But should they be telling regardless of who the GPS or who the doctor is or who prescribed it, should they be telling the side effect of. What’S potentially going to I have a habit of asking a lot of questions when we go to hospital or the GP or cans. I ask as many questions as possible, and I always ask about the side effects. But I guess I stupidly assumed that Ritalin and methylphinidate are in the same family. It’s just quick versus slow release. I thought they wouldn’t have anything extra that we hadn’t experienced already. But I think that it is necessary that anytime you’re prescribing something, you always go through this is the full list of side effects. These are the most common side effects.
[00:10:49.560]
These are the not so common side. Effects and what to do and what. To do in these situations because both of my parents were doctors, and so I have quite an unusual background or childhood of being raised in a medical setting. Basically, that’s why you knew all about those medicines and terminology. Like, okay, how can you memorize those for me? Yeah, so I sort of know the medical terminology. I know how to kind of talk to doctors and
[00:11:24.320]
yeah, I forgot what I was saying, where I was going. With that side effects. I do ask a lot of questions so that I can kind of get an idea of what I’m going to be dealing with. But I wonder how many parents would have been in the same situation and just stuck with the Ritalin that had the bad side effects. So for my son, we monitored him very closely, and he only gets his medication for school, like, Monday to Friday. We don’t give it on weekends or school holidays.
[00:11:58.280]
And I thought if I didn’t know what I know, being raised the way I was, would my son have ended up in a really bad way? Like, would he have committed suicide or would he have hurt himself seriously? I just think there needs to be certain checks. I know that our healthcare system is really under the pump at the moment, but I feel like you’ve got all these children who are in a lot of difficult situations socially, medically. We’re giving our kids all these different types of medication. There needs to be, in my opinion,
[00:12:39.800]
is there need to be certain checks where either a doctor or a nurse will follow up with each of these kids and say, hey, look, parent, how is your kid doing? We did a recent prescription change. I just want to make sure that your child isn’t displaying any of these characteristics or behaviors, because these are quite concerning because your child is young. And oftentimes I find in kids that are autistic, they don’t often express how they really feel. Like my son, Eli, if he was bullied at school, he wouldn’t say anything to us. He’s quiet, and it’s not him, it’s the teachers who reach out to us and say, hey, look, we’re following it because Eli had something happened to him at school today and he was very upset by it. Did he talk to you about it? And here we are going, what the heck? No, we didn’t know. So oftentimes, kids that are on the spectrum, they don’t communicate with parents the way that they should. So I feel like there should be some sort of obligation by a medical practitioner or a nurse or something to follow up there, because I don’t think there are a lot of parents that know about side effects and medications and what to expect. And especially if you’ve got one child and your one child is autistic, this is a life changing situation. And if you don’t have that background history, then how can you be expected to know what to do?
[00:14:05.760]
Yeah. And not that you’re passing on the responsibility to practitioners, but it’s like these parents are already under different stress and we tend to usually forget, like, oh, yeah, I forgot about this. I need to follow up, or something like that. Yeah. I think that Eli is high functioning. So his medication, Metal Day, is just to help monitor his hyperactive deficit disorder, ADHD. Basically, from the time he gets up
[00:14:41.600]
to the time he goes to sleep, he’s back and forth, moving. And we put a pedometer a step counter on him. And he was doing anywhere between 25,000 to 30,000 steps a day, back and forth, just constantly moving, jumping up and down, not able to sit still. And he only sleeps about four to 5 hours a night. Yeah, I mean, something that you need to worry about. That’s right. So he takes Melatonin to go to sleep. That requires prescription, right? I think you can get some kind of more diluted brands
[00:15:19.960]
from the health store, but the good stuff comes from the doctor. So I would go with the prescribed medication over the stuff that you get from general health store, the chemist or something, and it kind of works. We’ve had multiple meetings to discuss his lack of sleep, and because it doesn’t seem to bother him, it doesn’t seem to be a concern. But also, my dad specializes in sleep studies, so he’s a pulmonologist internal medicine specialist and sleep apnea specialist. Can he prescribe medicine to ela? Even though he doesn’t work in New Zealand, he’s based in the US. So
[00:16:06.360]
we often what my dad knows about both of my children’s medical history, so we always are forwarding copies to my dad to review. He doesn’t really like the New Zealand healthcare system and he wants us to go private. But I’m saying to my dad, unless you want to fork out thousands of dollars for private health care, where unfortunately, this is the healthcare system that we rely on, which I think is the same as the majority of New Zealanders, we rely on a public health care system where, unfortunately, we have long wait.
[00:16:47.280]
That’s another question that I raised. Early intervention. I’m always coming back to the fundamentals, like early intervention. Intervention works. But the problem is, once you get your child assessed, you have this long waiting list, not yet assessed. You go to your GP, and then they will say that we suspect that he is in the autism spectrum, like in my case. And then, okay, now we will be referring you to the DHB.
[00:17:16.680]
We were referred to the DHB, and then there’s this waiting list, and we needed to wait and wait until you get time. And then after that first meet up, we have the OT occupational therapist, and I think he’s a Pivia. And then we were explaining every circumstance, every scenario that we have encountered, like, he’s having this behavior and traits and so on. And then we needed to go back after that because there will be a follow up. I mean, given all the details that we have provided all the information, and we still need to follow it up,
[00:17:56.520]
and then we’re missing the boat in terms of getting the support and the. Good, or like a quick I don’t know if this is for everyone, but quick diagnosis, but poor follow through. And I don’t know why. Some kids are referred to cans and some are referred to the DHB because they’re two separate clinics, and it seems to be they’re completely independent of each other. And our experience with the DHB is the waiting list are ridiculous because when. My son started to wake up in the middle of, like, 12:00 A.m., 01:00 A.m., then good luck to you if you can go back to sleep after five minutes. No, he’s going to wake up, and then he’s going to be crying all day, all night.
[00:18:44.600]
Good thing there are no police. Nobody’s reporting us. Like, this child is going overnight and stuff like that. I think we are only able to sleep back around 05:00 A.m.. 04:00 A.m.. How old is yours? When we suspect that he has autism, he’s three. That’s been C, I think. And then he’s five now. Okay.
[00:19:08.240]
Yeah. And we’re just switching places with my wife. Can you carry him now? Because my husband needs a little bit of a stretching and stuff like that. So, yes, four, five a. M. Then we go back to sleep. And then 05:00 A.m. Is my week time. Five or 06:00 am. For work. Oh, that’s rough. Yes. And you can’t ask the doctor for any medications and stuff like that because we’re still waiting at that time for an assessment.
[00:19:39.040]
So there’s no proof that your child is statistic because they need paper. Your child’s being saved by the GP as well. And I wonder if you could possibly say, I want a referral to Cams. I don’t want to go through the DHB. I want to go through camps because they specialize in this. And you might get a shorter wait list and I should probably go back and ask the teacher how we got into Cannes because my husband and I have sort of not been equally involved. I’m terrible at answering my personal emails, so my husband is not and so she would email both of us and she would get a quicker response from my husband, so she would stop emailing me and email my husband.
[00:20:26.200]
I’m in the loop as far as my son goes, but the referral process, my husband knows more about it. My husband also has a degree in psychology, so he sort of understands this a little bit better than I do, but I’m just not sure. I think we got a referral directly to Cans rather than the hospital. And I don’t remember ever having an appointment with just the GP. Like, it wasn’t until after we were discharged from the care of KENS that we started seeing the GP. Is it because of having a purchase or? No, that shouldn’t be the qualifications. Right? Because if you know where you’re going but there’s a right path to that, right?
[00:21:15.360]
I don’t know, because at the time we didn’t have a diagnosis, it was just the teacher writing. These are a list of all the behaviors we’re seeing and I suspect he’s on the spectrum and we want to get him reviewed. So then that was sent to and I don’t know how we were sent to camps rather than DHB, and that’s something I kind of need to ask my husband because he would know, but I’ve sort of since then been more in the loop. It’s just the initial process. Yeah. It’s not that you’re going to be more in the loop, but you will always be in the what? Loop?
[00:21:51.400]
Well, I mean, I’m doing the majority of everything now, but it’s just the initial I feel terrible saying this, but it’s just the initial being referred by the school to camp. So I’m not quite sure the links there how we got there, but I know that we were never referred to the hospital until recently, and that was because we were told that our doctor at camp is fully booked because he’s doing hospital rounds and he’s doing stuff at camp, so he’s sort of being stretched too thin. So because he has such a long waiting list, the GP thought that she was doing us a favor by referring us to the DHB, which has a slightly less waiting list, but good luck with that. Here we are. We’ve got a referral letter on a refrigerator that says, you are currently on our waiting list.
[00:22:44.480]
The waiting time is seven to twelve months. And we’re like, this is a ten year old who is developing. These are like crucial times in their life. They need to be assessed, I think, ASAP. I mean, New Zealand already has a really high suicide rate and I feel like our children need to be prioritized here. Because if you diagnose and treat something effectively and efficiently when they’re little and you follow through all the way to adulthood, you might see a significant reduction and at least some suicide cases. I mean, I hope my child never has to go through what he went through because it was two weeks of absolute hell and it was
[00:23:27.320]
only because I’m a very persistent person and I’m quite a bossy person. And when I get on the phone with my GP, I said, I want this done now, and I’m not going to stop until it’s done because I don’t want him on a medication where he’s saying that he wants to kill himself. And I stopped giving it to him straight away.
[00:23:44.560]
So as soon as he started talking about that, I said, no, I’m not giving it to him anymore. He’s never had these sort of thoughts before, and it wasn’t until we changed the medication that he started talking like this and behaving like this. So we took him off of that. But our GP is very good. We are very blessed to have an awesome GP. And she’s very onto it, and she just said, yes, no, you did the right thing. Don’t give it to him anymore. Take the rest of the Ritalin, give it back to the chemist so they can dispose of it properly.
[00:24:19.360]
And I will just write him up a repeat from his original, like the methylphenightate, and it will just keep him on that, unfortunately, until we can get him seen by someone who can adjust the dosage that he’s on to be more accurate to his weight and his age. So what did you give him after you stop reading? We had a few days where he was not on any medication at all. We just said to the teachers, you’re going to have to bear with us. I mean, just be patient with him. He’s going to be running around in the background of the class, which they find very distracting for a lot of the other kids, but oftentimes they’ll put him in.
[00:24:59.160]
There are a few other kids in his classroom that are on the spectrum as well, and one of them is a high needs kid, so they often kind of sounds like you’re segregating them, but they kind of put them together. And the way their classroom is designed is quite cool. They’ve got like a main classroom and they’ve got three different reading nooks, and they have like, closed doors where they’re kind of a quiet room. One of the kids has a minder, and she’ll sit in the classroom or in that little room with Eli and a handful of the other kids, and they put headphones on and little tablets and kind of distract themselves just so they can get something done.
[00:25:43.200]
And Eli, he’s a good reader. He’s really good at math, and his writing is okay, but he’s more into like, tech stuff, problem solving, those sorts of things. So he’s got a puzzle solving. He’s more mechanically minded, I think that’s how you say. Anyway, have you seen some machines built behind your house? Well, he loves Lego, so he’ll put Legos together and create these really cool characters. But he also is really good at drawing and he’s into comic books, so he’ll draw these really cool characters. And you like ten year old, you’ve got cool imagination.
[00:26:22.960]
But he develops full stories. Wow. And he does these really cool sound effects. He does like beatboxing, but he can mimic sounds. It’s crazy. He’ll hear a beat because he’s also got a photographic memory. So he’ll hear a beat and repeat it and it will sound almost identical. I’ve never heard anything like that before. So it’s really cool. Yeah. What interests me is they have this superpower that it will Amazon. Totally cool. You can do that. And how did you learn that?
[00:26:58.840]
His recall is nuts. I remember he was pacing back and forth in one of those little classrooms while we were having a parent teacher meeting. And my husband and I were talking to both of his teachers. And then Bernard, who is the special education and first year teacher, we’re going over all these things. This is how Eli is doing. He’s doing really great and progressing. He’s at the right level for his age. Struggling in social interactions is his biggest thing. He doesn’t like physical touch.
[00:27:29.160]
He doesn’t like to participate in group activities. He’ll sit just outside. Can you hug him? No, I can hug him. But he doesn’t hug back. He kind of does. This feels awkward for him. Yeah, he kind of does this. No, don’t touch me. How about that? Can hug you. Yeah, but he does the same thing, so he won’t hug you back. But my husband and I and his nana and his
[00:27:54.520]
auntie are the only people and his little brother can do a good bear hug. Anyone else? Like a patch on the back? That’s about as far as you can get. We were having a parent teacher conference meeting and we were talking about some very specific points. And Eli was in the back room passing back and forth, kind of making these really cool sounds. He’s just like mimicking all these cool characters that he’s come up with. And a month later we had just a quick review and Eli goes, oh, no, that’s not what you guys said. Yeah, my husband and I and the teachers all just stopped what we were doing. Excuse me?
[00:28:37.080]
And he said verbatim what we had said, and we didn’t think he was listening at all. And luckily the teacher had on her notepad exactly like what we had been talking. She was like, oh my God, I didn’t think you were listening. And here he is going, no, that’s not what you said. So my husband and I now cannot say to him, we’ll buy you a game in a week’s time or next pay? We’ll see. We’ll take you guys somewhere cool. Because he’ll say, remember like, two months ago you said you were going to buy this for me and you still haven’t. So his recall is crazy. Wow. Yeah. So very talented.
[00:29:10.720]
Kids who are on the spectrum definitely, like you said, have some really cool superpowers. And especially in today’s time, I think they’ll fit in because this is like a time of people to grow with technology, and just being unique is quite cool. You really succeed if you’re artsy or you’re technologically savvy, those sorts of things. If you’re an old bird like myself, you can’t do anything on the computer. Why do you say that? We’re a dying breed. As long as we can just support them.
[00:29:48.200]
I always keep on telling my wife my goal. Or of course, parents have goals with kids, right. And my goal for my kids is this super high. And then for my youngest who’s got autism, not that I don’t look at him like being super successful, but for now, he just needs to learn about living skills. That’s it. Once he is able to manage and learn about that. Now, next step. Next step. Next step. There’s so many different levels. Like, the autism spectrum is so vast. There are so many different kids that fit into this category.
[00:30:28.080]
You can’t hold them all at the same level. Right. Eli used to be like, what do you want to do when you grow up? And he’s gone through different phases of his life where he’s gotten into so many different things, like comic books. He was into building things, he was into space. And then, I love marine life, I love water, I love sea, I love sharks. That’s my thing, being out in nature. And he went through a stage where he was memorizing the Latin name of all the dinosaurs, like the marine dinosaurs. And he could tell you from what period
[00:31:01.320]
they were when they went extinct, what their prey was. Predators. Yeah. What would prey on them. He has these books, and occasionally he’ll pull them out. He’ll go, oh, yeah, I forgot about that. And then he reads one line and then he’s into it. He can tell you all the information again, but so I would ask him, so what do you want to do when you grow up? And he said he wanted to be a marine engineer and build subs, to go into areas to explore the sea that we haven’t been in yet.
[00:31:39.000]
And then now if you ask him what he wants to be, I want to design websites and I want to be a YouTube star, and I want to build and just play video games all the time. Okay, can we go back to being the marine engineer? But they’re making hips of money on. That space, for real. Some of these YouTubers are millions of dollars. He watches this family FGTV. They’re a cool family. They’re really cool, but they sell merch. I mean, they’re millions because it’s expensive.
[00:32:13.760]
Yes. And all they do is play video games, right? It’s just like, they’ve got the green screen with like you’ll see the dad and the kids, and they’re all playing, and you get to watch them play these stupid video games. You’re like, what the heck is going on here? It’s a stupid floppy frog just jumping around and, like, hijacking cars and slapping things, and it’s millions and millions of views, and you’re like, this dude is making so much money. Look, if you want to do that, that’s okay, but you better be successful. But his thing, he changes all the time.
[00:32:44.400]
So, like, Jack and I always have to tell each other he might not be the same or have the same interest as other typical kids, but he has goals for himself, and that’s the important thing as a parent, is to nurture the things that he’s interested in and help mold him into the best person he can be. Because if he doesn’t do well in college, then we might have to take him out and home school him or put him in a different school system, because where it’s sort of he’s year six going on your statement. So he’s got two more years at Tiato, and then he will be in college. And that’s scary for me because. His school at the moment is very small. Very small classroom.
[00:33:37.800]
That’s going to be a bigger school. Yeah. So all the Bryce kids, the Bryce males, go to wrong atta college. Then three generations that have gone into Romatai College, they know the teachers, they know everyone there, basically. And my brother in law is the rugby coach. Elaine is not interested in rugby. Yes. Because of the touching. Don’t touch me. Yeah, he was kind of interested in swimming for a while, but then he doesn’t like the competition because he’s quite hard on himself. So if he loses or if he doesn’t get
[00:34:12.800]
something straight away, he gets very frustrated and he’s very emotional. So he’ll start to cry, and then he says, I just can’t do it, and I’m stupid. I’m like, no, you’re not stupid. You just have to calm down and take a second and try and figure it out. Right. Call is just a bit of a nerve writing now. I’m going to start thinking about it at the early stage, but let’s see. You’re making me nervous. Oh, my God. I’m sorry. That’s all right. I’m just so paranoid. I’m like, you can’t monitor your kids all the time.
[00:34:47.280]
And maybe I’m over protective parents. Yeah. And that’s the thing. These kids need to be I don’t know, at school, doing social interactions with kids are brutal. Yeah, right. Kids are brutal. They’re so malicious and unforgiving. Judgmental theory. I am judgmental at some point, but. I’m pretty sure that I was a turd in high school, too, but I didn’t bully people when I was in school to now I feel like kids have gotten a little bit more malicious because we’ve got the social media platforms, like, where they can afford each other.
[00:35:27.840]
And express themselves like no one’s looking. Well, these are horror stories that hopefully they haven’t happened to anyone that we know of. But you hear these stories where these kids record things happening in school and they post them and they go viral, and then there’s cadre at the center of it. Negative attention. Right. So I feel like social media is kind of a good and a bad thing, but Eli, he’s a quiet kid and he’s very loving and caring, and he seems to have a good niche or a good group of kids that he fits in with that understand that he’s a little bit different.
[00:36:08.720]
And they don’t force him to play games. They just kind of go, oh, good, we’re going to do this. If you want to play with us, you can. And they’ll start playing and you’ll see Eli kind of hanging around just outside the group while they’re playing their game. And they’ll be playing like swords, pretend swords. But if there’s a stupid sandpit and they’re digging holes, as long as it’s. Doing the social interaction, I mean, that’s very important in terms of if you want to impose a daily living skill, because that’s a daily yeah, for sure. Well, humans are social animal, right? So we don’t really tend to function right.
[00:36:45.520]
If we’re not social, look what happens if you’re hermit. Oh, crazy. Yeah. But I think that maybe if you’re wired differently, maybe that doesn’t apply. Maybe he’ll be fine. Sure. Son is he eligible for oversight? That’s the funding that you will have your son or has high need support and you have teacher aid? I don’t know. So Brunei, the teacher, she said that we were eligible for support, funding. Maybe that’s the same thing. But I think the schools have their own funding, or it’s like, allocated depending on how high the need is for it.
[00:37:39.120]
Do you think Eli has high needs? Eli is not high needs, very high needs. Because we did ask about should he have a minder at school? And the teachers kind of said, well, he’s kind of too high functioning for that. Like, he can do the math, he can read, he can write. He can do everything up to his age. He’s okay. So I guess if they were going to grade him, he’s at the appropriate level for his age, but it’s just his social and some areas, reading comprehension. So he can read a book and he can tell you what happened in it. But if you were to quiz him and say,
[00:38:17.720]
what do you think the main character got out of this? What was the lesson that he wouldn’t be able to tell you. He would just be like, oh, he played with a red ball. So he can tell you everything that he read, but he can’t comprehend the story. He can’t put two and two together and give you an answer. So he really struggles with the reading comprehension. I think that’s I think it’s quite normal. Yeah, but everything else, like math is quite good at. He does get quite negative about some of his math work. So he’ll give him, like, a little quiz or whatever just to test him to help, because this is what the teachers have told us to do.
[00:38:58.040]
As long as he’s maintaining the basics. It should be okay. And then you slowly build on top of it. It’s okay because it’s good. He’ll learn the new stuff. But if you quiz him on the basic stuff that he knows, it’s a good positive reinforcement because he’ll go, I can’t do this. This is too hard. And you go, okay, well, let’s just review your times tables, right? Or just do some addition, and you go through some of these easy things. He’s like, this is so easy. I can do this.
[00:39:24.080]
And then you do that new thing, and it kind of gives him the boost of positivity that he needs to kind of go, oh, if I can do this, I can do this. And then he’ll kind of sit down and do it. But he does struggle in some areas, but it’s not enough for the school to say that he needs a minder, whereas there are some kids in his class that really struggle, and they probably had a discussion with one of the kids, Nanas, and she said, he’s probably not going to make it into college. Well, I know good motivation. Thank you. I think it’s because she’s got serious concerns about his from what I gathered from our
[00:40:06.400]
conversation, was she’s worried about the support that he will have in school and being bullied rather than directly pointing to yeah, so, I mean, he is sorry. He’s not a high functioning kid. He needs a lot of support. He’s the same age as Eli, and he can barely write his name. So he’s sort of there for the social interactions just to try and get him to be socialized. But she was sort of saying, I’m quite happy to homeschool him, and he’s really good at this, this, and this. So if he’s being homeschooled, I can teach him the basics, but then I want to really hone all the things that he’s good at and help
[00:40:50.120]
build him and mold him in an area that he’s comfortable and confident in. He can succeed as an adult. But home schooling is okay to some extent, right. You don’t get the social interactions that you need. That’s the thing. I’m not sure if you watch one of the videos from Temple Grande, she’s recommending to put kids at school. At school, they will learn to interact. Yeah. They pick up on other kids whether or not they’re learning what you want them to learn. They’re still observing everything around them, and so they’re still picking up
[00:41:20.360]
on some of those basic things that you really want them to have. But I think it kind of depends on the child, too. You don’t want to push a child too far outside of their comfort zone that it makes them closing on themselves where they have high anxiety. Now, I don’t want to go out because of that. Yeah. I think in some cases, home schooling would be appropriate, but there are lots of you can be involved in community groups, other autism. There are a lot of autism groups in New Zealand that you can join and you could do, like, weekend meet ups and have them play or play alongside of other kids that are quite similar or have similar interests,
[00:42:02.880]
so you can still socialize them outside of school. But I think that it depends on how well the child is going to be because you don’t want to put a kid who’s already a little bit different to other kids and make them. Anxiety and now that’s right. Yes. I feel like that can do more damage than good in some situations, but I’m not a professional. I don’t know. That’s just my mother instincts kicking. Yeah. And we’re learning. Yes, you definitely learn as you go. We make mistakes. We’re allowed to. We’re not perfect.
[00:42:37.640]
Yeah. As long as we can revert back to if we made a mistake and then I just do it again. Try it all over again. I’ll do it a little more workable for you. Yeah. That’s so interesting. I mean, you don’t have a Ministry of Education support, right? For us, when my son started his Kindy and the teacher, we openly told the teacher that we’re waiting for an assessment to come out and then they recommended to apply for additional support in Minister of Education. So we filled out a form and then they’re the ones who submitted that.
[00:43:24.440]
And then we were allocated with a learning forgot the term learning support teacher or something like that. No, it’s a specialist from the Ministry of Education who will be looking after your child. They will set some time with your family and then talk about your goals. They will go to the Kindy or the school. They will talk about how the child is progressing at school. Once they’ve gathered those information, they will create a plan for your chat. We definitely did not have that. Yeah. And surprisingly, or probably, I’m not surprised at all, but the plan never happened because, I don’t know, for some reason.
[00:44:05.840]
They just blame it on coven. Right? Yeah. I have to say that we can blame it all on COVID, but what are we going to do? I would just accept the fact that there’s covet. Maybe we just limit the support that we’re giving you. And then we’re the ones who brought up about the Oars funding to the support from the Ministry of Education. Like, we just learned about that from the training. So here’s the kicker. So we went to this training and then the Facilitator just mentioned about
[00:44:39.320]
the funding and stuff like that because they know my son. So she did mention about, oh, your son might be eligible for an Ors. And then we said like, so what’s an Ors? So this is the funding to have a feature aid cutting. The story short, when our Ministry of Education support got back to us and then they visited us, they were talking about the plan and goes, me and my wife did mention about the funding, like, how about O Rs or the ongoing resourcing scheme? So is it something that my son area can leverage on or can also apply one? Oh, yes, maybe we can also try that. Should you be telling us or why are we telling you?
[00:45:26.280]
Why is it the other way around? So my wife and I were laughing after that. Okay, so what has happened? You don’t know that’s bad. Yeah. I mean, based on their assessment, on the papers that they have, they should have already assessed, like, potentially we can try that and then we can suggest that to you as a parent rather than parents suggesting or recommending that to the support. Yeah, but if you had done that, do you think you would have ever found out about the funding?
[00:46:00.200]
Because no, we didn’t know about any type of funding. And it was just happened to be a comment that I made in passing to Bernas. Right. And she said, oh, but have you applied for the funding that you can get because your child is wow. I know, right? Okay. We have a list of people here. That if you want to get funding, you have to be registered. Please fill out a form because he’s on the system, you can apply for funding. And I said no. I had no idea.
[00:46:46.840]
There’s nowhere is that information available or that I have seen. It needs to be obvious. I feel like if anyone was going to find this, it would have been me, because I know where to look. I remember I used to work for medical counsel as well. You should know about that. So these are things that I feel like should be quite obvious to someone who’s been working in fields like myself, but I didn’t know about it. So if I don’t know about it, will all these other people kind of go without knowing about it as well? And I think maybe GPS need to have access to this information.
[00:47:28.440]
Yeah, maybe we can help the GPS. Yeah. And medicine is always evolving. As we have more research, more funding is put into specific areas. We’ve got new medications, new surgical tools that are being developed, new procedures, new diagnoses. Right. So there are new diseases that have appeared that have possibly been around for ages. I really feel for doctors, they’ve got a lot on their plate, but when we’re talking about our youth who are really vulnerable and susceptible, we kind of need to prioritize them. And I’m not saying that kids are more
[00:48:11.000]
important than adults because there are adults who need access to mental health facilities as well, but you’ve got children who are still learning to kind of develop into their own being. And if you don’t have GPS that have access to basic information, you go into an appointment because you’ve been referred there to talk about spectrum disorder. And the GPS only know what they know if they have not been given up to date information. Or there’s a disconnect between Ministry of Health and Ministry of Education and Mental Health Services. And you’ve got your poor GP here going,
[00:48:47.200]
yeah, I can tell you what I know, let’s do this and this. But then in the background. You’ve got Ministry of Education who can offer this. And you’ve got Ministry of Health who can offer this. And you’ve got so many different services. But they all seem to be disconnected and they’re not connecting the dots and working together as one organism to produce and deliver the appropriate information and the services that we need to build a successful society. Especially with kids or more kids being diagnosed with ASD. And we’re missing the boat in terms of being able to do early interventions exactly.
[00:49:25.240]
Especially this is just my idea. The problem with the long term waiting list, with the long waiting list, I think, can be addressed by having additional support from the GPS. If the GPS can assess the people or the person, if they’re artistic or not, and the government can perhaps accept that as a formal diagnosis, then we could perhaps shorten the waiting time. And I spoke to Hannah about Hannah from the Victoria University Autism Clinic. She did mention about the as detective. I think it’s something that they are actually looking at doing a test, but they’re still seeking funding for that, which is, I think we need to wrap up with the government or whoever, the funding, so that at least they can test it across Wellington
[00:50:27.120]
and perhaps the GP can use that as a tool and I don’t know, potential solution. Right. We don’t know. This is a little bit off topic, but I kind of chuckle when people talk about funding, because when you think about the taxes we pay, this is sort of political. Right? But I’m just saying that the other day I was having a wee little chuckle saying, why do we have city councils who put out surveys to say, hey, guys, we’re thinking about doing this. Your opinion matters to us. Which ones do you think we should do? Or no change at all. And then the majority of people go, no change, leave it as is.
[00:51:07.560]
No. And then, like a week later you go, congratulations, we’re putting a new crosswalk right in the middle and reducing the speed. You’re like, I wonder how much money you’re putting into this investment when no one wanted it. And this funding could be used for something else that we are in dire need of. Remember the 11.7 million? I tried to move on from this issue, but I cannot move on from that issue. Every time I see my son not being able to get his Ore’s funding, which is he’s entitled to that because he’s a runner.
[00:51:42.320]
So you drop him at school, he will just run, go away and then climb the gate. And then when he crossed the street, he’s not going to look left and right, he’s just going to cross bam. My ten year old still doesn’t look. Yeah, so that’s the point. I am trying to move on or move away from that issue. But that’s frustrating. You know that 11.7 million that has been donated to the private school? Yeah. So I said to someone who’s also directly linked to someone with autism that this funding could have been used to somewhere else.
[00:52:21.360]
Like kids who go to school, who haven’t eaten breakfast. I know, right. Kids who are in the autism spectrum. Not necessarily in the autism spectrum, but we can just use somewhere as long as I don’t know, I don’t think I’m going to be able to move on from there. I feel like these government people are smoking crack back here, we have so many basic needs that are not being met. And the children’s lunches when I was a kid, and granted, this was years ago, we used to have lunches provided for us. So you remember back in the day when you’d get the little milk cartons, we used to have that I don’t know if that was an American thing or not, but when I was in primary school and intermediate, lunch was provided. And then when you got into college,
[00:53:11.800]
you could either bring your lunch or you have to pay for lunch. But that was kicked out in the it was like, why? Especially when you’ve got people who are struggling. We’ve got a hike in petrol, a hike in living costs. I mean, kids are going hungry. Kids are not being diagnosed properly. Yes. And then we can abuse some of the fundings that are I would call. That misallocated to build a crosswalk in stage. Yeah. I don’t know. They turn it from donation to a loan. But I wonder if the payment that they regularly do giving from that 11.7, I wonder if they can just donate all
[00:53:56.640]
the payment to people who are in the auditing spectrum or who need support. I don’t know. You should write, the prime minister goes, your system is not working. I don’t care if you are a labor, if you’re national, or if you’re green. The system is not working. Yeah. And I feel like there is more than 93,000 suspected people on the autism spectrum in Outerwa or New Zealand. I feel like there’s more I just learned about you. So I’m trying to do the slavistics. I don’t think there’s just 96k here. I think there’s more, and that includes me because I’m part of the society. So we are just blinded by it.
I mean, your stats can only go as far as people are diagnosed, right? How about those who are not diagnosed? Those who are not diagnosed, but because adults, you have to pay a lot of money to be an adult to get diagnosed if you suspect that you’re on the spectrum or if you’ve got bipolar or depression or something like that. I mean, it takes a lot to see a doctor or a specialist to get a diagnosis. But I think that there are a lot of older people as well who might be on the spectrum who are reaching out because they might be embarrassed or ashamed.
But it’s already 2020, so we shouldn’t feel like I don’t know. I feel like we all need to be advocates. I don’t know. I know. It’s just me. My opinion. No, I agree with you. My dad is definitely on the spectrum, and he would not say that he’s 77. Knowing what you know about it, right? Oh, my God. Yeah. And when I was growing up, I always thought, oh, my God sucks.
He’s in time with us. He’s a workaholic. He’s obsessed with work. He knows I’ve said it to his face, but my older sister and I were talking about this in January this year, and I said, you know, I think you really all right, go ahead. I really think you need to be be a little bit more patient with dad. And I said, I don’t know if you know this, but Eli was diagnosed and a lot of his personality courts remind me of dad a lot. Yeah. And she kind of went on and I took her through it and she goes, oh, my God, I am so glad we had this conversation because I think you’re right.
I think dad might be on the spectrum. And I mean, he’s got a photograph memory, he’s socially awkward. He says things that you kind of go, oh, my God, he’s not just say that. And he is very obsessive about things, so he cannot start something and not finish it.
Right. I mean, an example of that was he messaged me last year and he goes, God, I’m still working through this freaking pandemic and I’m having to study for my cardiology exams. And I said, what the heck are you doing studying cardiology in your seventies? Because I don’t want any of my patients being seen by any of these really shitty cardiologists.
I don’t trust them to do my work. So he’s training to do cardiology so that he can refer his patients, so that he can tell the Japanese what to do. But he’s a perfectionist, and in some aspects, that’s exactly how Eli is. So I wonder it might be we can’t tell, given that we’re not experts. I know, but I’m just saying, reading between the lines here, it might be maybe it’s you you passed it on future generation does it okay, so what. Could have been a success factor?
Maybe a couple of last questions. What could have been a success factor for you if you are going to turn back time? I know it’s a little bit odd asking that. No, I think that so far, Eli is a success story. I really do. I mean, I think the system could have been a little bit better for him and reducing referral time, and maybe the communication between departments can be much more efficient so that we can get his prescription renewed. But we’re updated.
And I don’t know if it’s that every school is like this because we’ve only had one kid go through school so far, but his school has been very good. He’s very small classrooms, GP is very lovely, and the specialists that we saw has been great. It’s just unfortunate that he’s not available when you want him to be. But overall, Eli is quite good. He’s quite happy, he’s in a good space.
I mean, I’m pissed off at a few aspects of our healthcare system because I feel like it’s not meeting the bar. Yeah. But it’s sort of things that are out of my control and I can only do so much. What would you have changed in terms of the process? Would you just perhaps go directly to the GP as you thought it would be? I understand that GPS don’t have the same prescribing permissions that psychologists, when you’re. Trying to do assessments.
Yeah, I think that FGP has had the right training or accessibility to information to help them make diagnoses and prescribe appropriately for those that would eliminate so much of the weight. I mean, you’ve got psychiatrists who can prescribe the psychiatric medications and you’ve got GPS who can’t access all of that medication.
And perhaps it’s dangerous to give. I don’t know, I mean, the Council for Pharmacy Pharmaceuticals or whatever, they have more information about it. But I just think if we rely so much on our GPS, because they are our first point of contact for everything, they need to be given the support and education materials, they need to have access to everything.
Because it’s great we’ve got Ed doctors, it’s great we’ve got psychiatrists, but if they’re not available, who live for a whole year, and you’ve got serious cases that are high priority that your GP can see next Thursday and prescribe for done and dusted with a follow up appointment two months down the track or whatever. I don’t understand why that’s not a thing. And our GPS go through such a rigorous training program.
Why can’t we give them, why can’t they be the one to diagnose, prescribe and follow up? There are family doctors for a reason. And we have a handful of psychiatric doctors that are even available in New Zealand. They’ve just retired or they’ve left the country and now we’re in a deficit of these specialists. And so now people who are in the mental health category are suffering and they are the ones that need the most attention. And what do you think we parents can do to support? Yeah, I think the moment there are a lot of great support groups, facebook, Instagram, I think we rely so much on the medical system to help us and to help give us answers.
But if we just kind of stay with each other and support each other and say, hey, look, there are going to be some really hard times, you’re really going to struggle, or hey, I did this and it worked for me, maybe try it. We just need a bigger communication connection between segregate ourselves and be like, we’re the cool kids. This is where you come to have cool conversations about being a cool kid who’s got autism and these are the things that we’ve done. This didn’t work. This did work. Yeah, it’s great that you’ve got the medical community and you’ve got your doctors, but these things aren’t working and we can only do so much.
We are on a seven to twelve month waiting list for medication review or a diagnosis like confirmation of what you already know in the meantime, what can we do is just be a tight knit group of people who can offer support to each other and maybe, say, come for a cup of coffee and a play date. Give parents because parents need a mental break too. They’re not saying parents realize raising a kid who’s got autism is a serious mental drain. It’s not like a ten year old who goes to sleep. Like, a normal sort of family would be able to go, okay, lights out.
Whatever. Child with autism goes into a tantrum, and it can last for hours. And it’s not like you can just say you can just close the door and say, right, you have your tantrum. Come out when you’re ready to apologize or come out whenever you’re cooled off. You have to take them step by step and go through take deep breaths.
I understand you have to kind of baby them a little bit more than normal. It’s not an easy job. It’s exhausting for parents. For parents, this can lead to mental problems. Burn out. Burn out. Yeah. And superstar. Yeah. You get depression, anxiety, all those kind of stuff. Fatigue. Yeah. So we need parental support as well. And I think a lot of parents probably reach in other ways, right? Yeah. What is autism in the eyes of Susie?
Being cool. Being cool. I like that. Yeah. Eli is a really cool kid. The kids that are in his class that have autism, super cool. They’re quirky, they’re fun, honest. They’re brutally honest. That’s what I like about it. I don’t have to tell you how good you are just to please you. You know what I mean? Like I said, Eli is quite high functioning, but we’ve had play dates with kids that aren’t so high functioning as him, but they’re still cool. We went to a birthday party recently, and their train of thought is so different.
You can be talking about one thing, and then there’s a bee that flies by, and they’re like, oh, this is really cool. And they start buzzing away, and you’re like, I wish I could live in your land. It just looks so peaceful and cool. But yeah, I mean, it’s been a journey for Eli and for my husband and I, but I’m looking forward to seeing what he turns out to be as an adult, because I think he’ll be a cool person, and then he’s so sweet. He’s so sweet. Very sensitive. All right. Okay. Thanks for your time. Thanks. Peace, ma’am. All right, thank you.
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