Takiwātanga No. 52 Dayna Morris | Autism NZ | Autism mum

Takiwātanga No. 52 Dayna Morris –

This transcript is machine generated and was not proof read.

Lloyd [00:10:08]:

So, first and foremost, who’s Dana?

Dayna [00:10:30]:

Okay, so I am a mum of two beautiful girls. My eldest is neurodivergent. I enjoy the outdoors, listening to music, meeting friends, walking, and generally chatting.

Lloyd [00:10:46]:

When did you find out that the process? Yeah, the process.

Dayna [00:10:51]:

So Ava was born, she was bang on like 41 weeks. So normal pregnancy, everything was fine. She was always a very alert baby. Probably when she started getting to solid she would turn her head away. And I had meetings with Plancker and I had my concerns and they would write it down and then it would be back and forth to the GP. I used to go walking with a friend daily and her son would eat, so I knew something wasn’t quite right. Sleeping. The only way I could sleep, like she would sleep would be walking for hours, which is good for me, or driving in a car to sleep. No issues at Kindy at all. Nothing was picked up, probably, I don’t know.

She started school. She started school and lucky enough, we struck an amazing teacher who herself had two autistic nephews. So she said, I think there’s something there. And I was actually really grateful. I was like, thank you. So she got the ball rolling with the school staff. So Ava had already done six months. So she started July the year before with a lovely teacher, but I didn’t know she was having meltdowns in school. The school didn’t let me know that until the following year. So the process started in January the following year. And then it must have been a good 18 months to over 18 months to get an appointment with Child Development in Lowerheart. But in the meantime, we were trying to get what support we can, so we went privately.

Lloyd [00:12:30]:

So before the Child Development in Lowerhardt, did you go to your GP to seek, like, an appointment from sorry, I had.

Dayna [00:12:38]:

An appointment, yeah, with the GP. And then she put the referral through. She had really good language. She was meeting all the developmental things, but obviously masking. And, I mean, that was quite a long time ago. So I guess there’s a lot more education and awareness around it now.

Lloyd [00:12:55]:

And when it comes to the meltdowns, was it like, I’m trying to see how the meltdowns are.

Dayna [00:13:05]:

So hers were probably more sensory, so it would be getting dressed in tags or clothing. She’s had issues toileting. So quite often she would do number twos and hide number two. Sorry, poo’s. So she would hide when it happened. And now that I look back at Kindy after she was diagnosed, I’d have a conversation with the Kindy teacher and she said, oh, she used to hide under a desk if there was, like, noisy. But it’s quite hard because that behavior is sometimes normal at preschool age.

Lloyd [00:13:36]:

Yeah. So kindly and then how long did it take from GP to Lower Hutt Child Development?

Dayna [00:13:44]:

It was probably around about yeah, I’d say a good 18 months to just under two years. And then just before we got the appointment, that’s when we went privately because we were like, desperate. We’re just like, wanting to get it sorted before she was, like, at school and to kind of help her where we could. That’s when we went into Vaughan Richardson, a private pediatrician in town.

Lloyd [00:14:05]:

That’s the formal assessment. The private yes.

Dayna [00:14:08]:

No, sorry, just basically said she had high anxiety and gave me melatonin for sleeping. And then we were still on the waitlist at Child Development and we were going out one day and they called because the family hadn’t shown up. So I literally had an hour to get these kids down. There was nothing prepared in that process. Took it felt like probably a good few weeks over time because you were visiting.

There was a paid and then there was OT and there were lots of psychologists appointment and then that’s right, there were school holidays. So the psychologist obviously wanted to see what Ava was like playing with, and interacting with other kids. So I ended up having children at my house and she came in, and observed there, which was quite cool.

Lloyd [00:14:54]:

Is she okay with other kids?

Dayna [00:14:56]:

Yeah, she’s got lots of really good friends, so she’s really friendly like that. But it depends on who the kids are usually. Yeah. But in most situations, she’s pretty easygoing. She’s well-liked. Yeah.

Lloyd [00:15:10]:

Very creative in terms of finding out and getting the assessment. What happened after that, once you already are aware she is on the spectrum and you got your meet-up with the private healthcare, any other support that you got?

Dayna [00:15:29]:

No, I’ve done a lot of research myself, so I kind of knew before I got there. It’s quite an overwhelming process as a parent, so you get lots of information. I literally couldn’t look at it for like two months. I was just like, didn’t know where to go. And then you kind I don’t know. I came down, actually, to Autism New Zealand here in PATONI when Jenny Woodfield was the outreach, and it was this tiny little building, and I remember coming in and she was amazing. She was like, I’ve got an autistic daughter and she’s like 32 now and she’s made it through. And I’m like, oh, there’s light at the end of the tunnel. And she was amazing. She hooked me up to all the right supports.

I didn’t know about the needs assessment. So basically you’re given you a bit of paper and that was it. And then Ava did. So then I went into school, explained what her diagnosis is, and it is an amazing school. And I know one of the teachers, older teachers, said, look, I’ve already got a child, a grandchild. You don’t need to tell me anymore. And I was like, well, actually so I did have to bring a psychologist into school a few times just to make sure school was on board with where Ava was going.

Lloyd [00:16:35]:

Then the school is welcoming.

Dayna [00:16:38]:

So the school didn’t know until yes, she would have been about five and a half. So her teacher was amazing. They’ve been great. And a lot of it is communication with the school and the teacher and checking in, and if she’s had a rough night, if she’s not sleeping, I would send them a message. So they know, but they’ve been amazing.

Lloyd [00:16:56]:

Schools are not built for autistic kids.

Dayna [00:16:59]:

Right.

Lloyd [00:16:59]:

It’s very overwhelming. Did they help with that?

Dayna [00:17:04]:

No, she has just mainstreamed and because she has low needs, we don’t get any support, so we’re not entitled to any teacher aid or anything like that. She’s very bright, but does I guess it’s a social side. If there’s a game like sport, that’s what trips her up, really, is the roles, et cetera. Yeah.

Lloyd [00:17:28]:

Even if a person has low needs or still need support in terms of education, like how far or advanced they are from.

Dayna [00:17:36]:

So I think the first probably few years her teachers would adapt as she went through, I think it was like the dinosaur phase. So they would kind of tweak her work a little bit like the dinosaurs. If they were doing the writing, they would accommodate it that way. We’ve never had an IEP and I have asked a couple of times, but they are managing her, is what they say.

Lloyd [00:17:59]:

How is that? I mean, every parent that I’ve heard they’ve had IEPs as well. Is it only for the high needs?

Dayna [00:18:05]:

Or only everyone is meant to have one and I’ve only just been kind of learning a lot about them. So every child with a disability is meant to have them and basically it’s an adjustment of the normal work they would set for the normal classroom.

Lloyd [00:18:17]:

For neurotypical.

Dayna [00:18:19]:

Yeah. So if, for example, ava might need a little bit longer or she is quite capable of writing. But say for those kids that need to write on a device or like sometimes pen and paper is very hard for them.

Lloyd [00:18:33]:

The modules or the school settings created for neurotypicals. And when you are starting to rate them, like based on what they’ve done for the past or for this year, it’s based on your typical curriculum, if that’s the right term. Curriculum. And for autism or autistic children, I don’t think it’s going to work for them. So how is she being assessed in.

Dayna [00:18:55]:

Terms of the curriculum saying she gets no, there’s no limitations. I mean, she’s very bright, so she’s above and beyond. She is a perfectionist. So there’s the hard book. So sometimes yeah, that falls the other way as well because she is so hard. So it can take a bit longer, that one. But academic wise she’s.

Lloyd [00:19:15]:

So how’s the family when you found out that she has autism? Like the grandparents or aunties uncles.

Dayna [00:19:23]:

So my parents, they live down south, so it has been we don’t see a lot of them. They probably come up once a year for that. They were still quite set in the old ways. I remember like Ava doesn’t like for dinner, for example, she would still sit on her own and we eat separate dinners. As in she will have something, she won’t eat what we have sensory. Yeah, but they are that generation back then. So you sit at the table and you eat what’s in front of you, so it’s been able to reeducate them.

Lloyd [00:19:57]:

Are they strict, especially grandparents? Based on my experience, they’re strict, like, you have to eat. We all have to eat at the same time and same food, no other food.

Dayna [00:20:06]:

It doesn’t matter if you don’t like it, it’s tough luck. We sit there until it’s gone and there’s nothing else, whereas you can’t so they have come a long way. Like, it’s been better. So it’s just acknowledging that, I suppose, educating them. And then on my husband’s side, they’re on Christchurch, so we don’t see hardly any of those as well.

Lloyd [00:20:24]:

Is she still having challenges on the food that she eat right now?

Dayna [00:20:28]:

It has got better, I must say. This year is still very beige. But we’re doing chicken now. Yeah, she’s starting to eat. Like, last night we had venison sausages and it was one meal I cooked and I was like, but everything’s like picnic dinner, so everything can’t touch. Yeah, so similar. But she’ll still have different things. Like, she would have like she had rice last night or she’ll have pasta, and then there’ll be carrot and some nuts. So kind of still healthy, but very different to what we would have. It takes around 14 days through because we went through one of the food clinics at the hospital and it takes, like, there’s a whole list of steps to even get to the chicken. So it might be the chicken every day for like, 14 days, and then it might touch the chicken for 14 days, then it might smell it. So it’s a lot of waste and it’s just one of those. And I think I used to get quite panicky because I’d be like, she’s not getting enough nutrients, but I’ve just kind of learned to let go. And I think being a bit more relaxed, she’s willing to try things. Yeah.

Lloyd [00:21:32]:

I remember they were saying that my son used to be with a nutritionist valley as well. And the nutritionist said that it’s like play rather than yes, we done the.

Dayna [00:21:47]:

Food thing and I went to one of it. But when you got a younger child, you don’t have an hour or two to play with hummus and paint my nails with hummus. And very good at their jobs. And that’d be amazing if they could see our kids more than, like, once that they can’t. So it’s a tricky challenge.

Lloyd [00:22:02]:

Yeah, it is. And they said, let’s say this is the food, and just make sure that it goes near the mouth. Once it’s near them out, then there’s a high likelihood that it will go inside the mouth.

Dayna [00:22:15]:

AVC are really bad growing pains up until probably two years ago, and that’s when I put her on magnesium because she wouldn’t get them through the nutrient. Yeah. So really bad.

Lloyd [00:22:24]:

Is she having problems with vitamins, and magnesium?

Dayna [00:22:28]:

I give her everyday vitamin C and I’ve just bought gummies just because they always seem to be sick after COVID. And I give her a magnesium a night, but that’s good for sleep and relaxing the body.

Lloyd [00:22:41]:

You’re no longer taking she’s no longer taking the melatonin? Yeah, she has to, she has to.

Dayna [00:22:46]:

Well, she doesn’t. She’d still be up till midnight, so she needs it. Yeah, we lapsed her but in the holidays, and I was like, have you had your melatonin at 10:00? And she’s like, no. And she’s still like, does she need.

Lloyd [00:22:58]:

Time before sleeping to take the melatonin? Like 30 minutes before?

Dayna [00:23:02]:

Yeah, I try and go to about 730, but it’s getting later to eight and then she’ll pretty much go straight out now. She’ll read, she’ll go to bed and read or draw, and then she’s usually asleep 9, 9:30 sleep all night now, so it’s good.

Lloyd [00:23:17]:

Somewhat similar experience with my youngest and for some reason he wakes up at twelve midnight every night.

Dayna [00:23:25]:

Is he a melatonin?

Lloyd [00:23:27]:

No, he used to wake up every midnight, but we didn’t want to give him that.

Dayna [00:23:33]:

She wouldn’t take the GP one because she doesn’t swallow tablets, so I actually get them through Amazon and they’re little chewy strawberry dissolvable lollies.

Lloyd [00:23:41]:

Yeah. Is it safe?

Dayna [00:23:43]:

Yeah, I took it to the doctors. It’s natural ones we got. She goes over there, you can actually buy them over the camp, like just over the counter.

Lloyd [00:23:49]:

Right. But it’s it’s no longer like it’s you’re now paying it from your pocket, right?

Dayna [00:23:56]:

Yeah, but it’s only $15. I was paying for it anyway. It’s $15 for 200 tablets, whereas the GP, I was getting 30 tablets for $20 and she wouldn’t need them. So it’s a play.

Lloyd [00:24:07]:

Yeah.

Dayna [00:24:07]:

So just get it through Amazon and ship a big heap out.

Lloyd [00:24:10]:

Going back to my threshold. He will wake up twelve and then sleep back again, like 03:00 A.m., 04:00.

Dayna [00:24:16]:

A.m. And then that’s him for the day.

Lloyd [00:24:18]:

Yeah. And then when I’m going to bed now, it’s like a couple of hours and after a couple of hours I will wake up like, oh, do I need to sleep now? But he used to be like that, but good thing he improved. So he’s now sleeping. So our technique is if he will sleep like 08:00 p.m., 09:00 p.m. Definitely he will wake up at one, two so we found out the trick. Like, he needs to be awake until 1011. It’s not a good song, the it’s.

Dayna [00:24:51]:

Melatonin sees brain, though, it’s something that just doesn’t switch off.

Lloyd [00:24:55]:

And we just need to make sure that in terms of tablets, because of the light, we need to control him.

Dayna [00:25:02]:

Yeah. I’d make sure they’re off screens as well because it’s the screens that they’re addicted to.

Lloyd [00:25:07]:

Yeah. So their brains probably will interpret. Oh, it’s still daytime and you’re still active. That’s our trick. So we don’t want him to leverage on melatonin. I don’t know, there might be some.

Dayna [00:25:22]:

The effect, but if you can do it that way if you can manage it that way and baths, I don’t know if you got a bath. Baths are really good with some magnesium salts and stuff in them and then awesome lavender. If he likes the water, he likes the mother. Yeah, that’s always good.

Lloyd [00:25:37]:

So you put bath and obviously it’s warm magnesium and okay.

Dayna [00:25:42]:

Yeah, like a couple of drops of.

Lloyd [00:25:43]:

Like, lavender, just like a powder.

Dayna [00:25:45]:

Yeah, it’s like a salt type thing. Really fine salt. And I just put a handful, sprinkle it around and it dissolves in. But it’s really good for legs and stuff.

Lloyd [00:25:53]:

And in terms of going back to Ava growing up and then reaching puberty, I’ve seen a lot of questions about puberty, so how’s puberty for puberty has been a breeze.

Dayna [00:26:05]:

I was dreading it. And it’s been good. Like, I talked to people here, but we have been set up, so we started it probably when she was eight, so she wasn’t even going through it, but we knew, like, I knew myself, the more information she had to process it, the better the time and to be really open. I grew up in a generation where you didn’t talk about it. No, it was like, that’s it, you got your little period box and that was it. So probably at eight, I started with Deodorant to start, and that was good. We started early because it took a long time to find mum because of the smell, either spray or the feeling. So that whole sensory thing, did she.

Lloyd [00:26:44]:

Start using it or just smelling it?

Dayna [00:26:46]:

At first, I think we put it in her room and it was probably a visual thing, I’d say for a while, and I don’t need it. And then she obviously accepted it. And then in year five, six, so standard three, four at school, they do education classes for both of them. And then we were just open and I actually bought, like, kits and then I had books that I would leave in her room and that she can they’re all tailored. Yeah. Books that parents had recommended. So a Cares Cook one is a really good one. It’s called cares. Cook. She’s written quite a few. I’ve just bought her latest one. I think it’s Teen Life, and I think the other one might be from Eight till Twelve. And it covers everything from, like, friendships.

Lloyd [00:27:29]:

To whatever and strategies on how to do.

Dayna [00:27:31]:

Yeah. So she would just read that in her own time and then really open. Yeah, it’s been absolutely fine.

Lloyd [00:27:38]:

Do you initiate the discussion or you just wait for her to tell you, I want to talk to you about?

Dayna [00:27:45]:

And she’ll do it. She’ll like, don’t tell anyone. And I would say probably they learn a lot on YouTube, I would say, without us knowing. There’s a lot of really good probably tools that they’re showing that they can.

Lloyd [00:27:57]:

Yeah. I also. Have a daughter. So I’m just thinking, like, okay, I bet she’s going to be more open to mom.

Dayna [00:28:05]:

Very open. Dad probably doesn’t he knows, but he doesn’t know. Don’t tell dad. Dad’s coming. Yeah.

Lloyd [00:28:12]:

So it needs to be to have like a bond between mommy and daughter.

Dayna [00:28:16]:

I guess most dads, but yeah, I don’t know, she just came to me, so, yeah, it’s been way easier than what I thought. She’s taken out really well, going back.

Lloyd [00:28:25]:

To that deodorant and being familiar with, oh, there’s a deodorant here, and blah, blah, blah. So she has no sensory no, she.

Dayna [00:28:34]:

Didn’T like sprays, so I’ve narrowed it down to a natural one. Now that’s just got a hint of I think it’s rose. I just get a pack and save a tier road. It’s a New Zealand one.

Lloyd [00:28:43]:

And she every day and she’s okay with hygiene. I’ve heard there are some kids who doesn’t like toothbrushing during their young age.

Dayna [00:28:53]:

She’s been really good like that. Showers every night. We still got a problem, it’s time for a shower. But she willingly goes every night. She’s very clean like that. So I’ve been lucky.

Lloyd [00:29:04]:

Oh, yeah. It’s kind of like a smooth feeling for you.

Dayna [00:29:07]:

Yeah. And she definitely does dirty teeth. Still a bit of prompting, but we get there.

Lloyd [00:29:11]:

So what are the food that she’s eating now? You mentioned she’s no longer that sensitive.

Dayna [00:29:17]:

Yeah. So she literally when we went to the food clinic, I think we were down to probably under 20 foods. And then that was going through, like if you had, say, a raw carrot, you’ve probably done that. Then you cook it and then you might grate it and then you might cut it a different way. So now, I don’t know. She likes fresh fish now. She wouldn’t do fresh fish from the supermarket. Blue cotter, mustard. So expensive fish, but doesn’t matter. But her palate is definitely opened up. I mean, not great on fruit or veggie. She’ll only do raw carrot. That’s the only veggie I can get into her. Won’t do any red meat. And the odd bit of apple, if it’s crispy in a certain type, but that would be it. And fruit.

Lloyd [00:30:05]:

Did she food jog like my son, right, I was doing food jogging. He will be eating something, let’s say rice cracker, let’s say for a month or after that. He doesn’t like the rice cracker. He will go to apples. Just apples?

Dayna [00:30:20]:

Yes. We have a lot of food in our pantry. People go, wow. And I said, yes, because you buy it all up and then, yes, it gets parked up. So I do remember going back to school probably when she was probably three to about five. We had hella’s precooked sausages. Well, we didn’t. She had a Heller’s precooked sausages every night. Now she won’t touch them. We’re onto Hella’s bacon now and it has to be the streaky bacon.

Lloyd [00:30:47]:

Was there a time that she just didn’t eat food?

Dayna [00:30:50]:

Yep. We did go, and that was just after she got diagnosed and I rang in a panic because she was sorry. Just before she started school there, when she was about four and a half, between four and five, she ended up with pneumonia in hospital, and she was in hospital for a week. So this is before she got assessed. We didn’t know, obviously, anything, and it was horrific. I was taking food in and now I think it must have been awful, like, she actually a fear of going to the doctors now with the needles, the sound, and she was literally in there for a week because she wouldn’t eat. But we didn’t know any of this, so we were taking food in and they were like, you need to eat this. And I was like, Now I think about it was absolutely torture. And then I put her the GP, gave her it’s called Increment, like a multivitamin for fussy eaters. But when her anxiety gets quite high, she doesn’t eat. Yes, it kind of goes she’s been great at the moment, although yesterday, her school lunchbox, she’d eaten one thing and she said, oh, they needed to play with me, or they wanted me to do something. So it depends on the situation. If she went to I don’t know, I guess out of routine. So say she went to someone’s house for, like, breakfast. She wouldn’t probably eat it just because it’s a different routine, those different situations. Or if she was like, on a school, say a school camp or whatever, probably wouldn’t eat the food.

Lloyd [00:32:10]:

In my case, when if there will be like, let’s say there’s a party in a new place, what we will be doing is we’re going to visit that before the party.

Dayna [00:32:20]:

Yes, that’s what we do. We do that too, and we’ll scan the menu or I’ll text the mum and go, what kind of foods? She’s pretty good now, depending on what time the party is, I’ll eat the feeder before she goes. And at least, you know, if it’s only cake, she’ll eat cake. But generally patty food is patty food and she’ll just eat all the sweet stuff and that’s fine.

Lloyd [00:32:40]:

Right, so how are you going to parties and stuff? Because this is what we usually do, like party. Sorry, not party party, but children’s party and stuff.

Dayna [00:32:50]:

So you have, like, your son’s birthday?

Lloyd [00:32:53]:

During my son’s birthday. It’s only just family. He hated the noise.

Dayna [00:32:59]:

I was going to say. We learned that very quickly. It took us till she was about seven or eight and she’d have birthdays and then half the time what happened before that? She’d gone and hide in her wardrobe and I’d be like, well, the cake blowing. And then actually, last year, she said, Can I have a cake? And then she had a couple of friends around and she said, can you actually not sing me happy birthday? Just blow out the candles. And I was like, yeah, that’s fine. So you learn over time what works, what they want, and quite often, like surprises.

She hates them, so quite often she will go online and pick what she wants for her birthday. So last year she went into AliExpress and she had it was great. She knew what she ordered, but it came randomly, like three months. And then we will buy you something, but I will say, this is what we’re going to get you. So she knows rather than anticipation, because it’s like on Christmas, if you have all these presents, it’s very overwhelming, and if everyone’s watching you open it and to see your reaction does she?

Lloyd [00:33:55]:

Probably not the right word, but hate surprises. Like, if it’s a box and I say, what do you want?

Dayna [00:34:02]:

Or yeah, she would say, or if I say something for me that’s come in the mail, I’ll say, Why don’t you open it? And she’ll say, no, you open it. So she needs to know what’s in there, and that’ll bring her anxiety down.

Lloyd [00:34:14]:

Yeah, I just learned about that concept.

Dayna [00:34:16]:

Yes, it’s pretty amazing. And it makes sense, though. I mean, I like a surprise to a degree, but I don’t like a big surprise, if that makes sense. Because yeah, if someone said, oh, something but if someone say, my husband came home and he bought me something, then that’s probably a little bit different because it’s on the spot. But if it’s all pre-planned, it’s quite yeah.

Lloyd [00:34:35]:

And if you’re expecting something else and.

Dayna [00:34:37]:

She hates being, like, center of attention. It’s all about her.

Lloyd [00:34:40]:

Yeah, that’s good.

Dayna [00:34:42]:

At least you’re learning from oh, yeah, it’s amazing. She’ll decorate her own cake. It’s great.

Lloyd [00:34:47]:

So how’s the sister about dealing with those?

Dayna [00:34:49]:

I mean, she’s younger, so yeah, she’s really good. They have a love hate relationship sometimes. Like, she can be quite she’s quite bossy, the little one. But they are they do get on really well when they do get on. Yeah, she gets yeah, they do get on.

Lloyd [00:35:06]:

So basically they have different, like, birthday parties. So the birthday party of the adult is yeah. Different from the the youngest. Yeah, obviously. And are they okay with that?

Dayna [00:35:17]:

I mean yeah. So like, last year, I’m just trying to think what my elder’s youngest, she went to Jungle Rama. So we took the kids over there and then Ava didn’t want to jump, so she just she was okay with the noise. She’s like, I can tolerate it for an hour or whatever, and then they come back to our house and they were noisy, but she was in charge of doing a scavenger hunt, and she liked she liked being able to do that. But then she was like, oh, they’re so loud. So then she went to her room, but it was fine. Yeah, she can cope when it’s only short amounts. And if you kind of pre plan it all right.

Lloyd [00:35:48]:

And in terms of when we are going to talk about the daily living activities, how are we introducing that?

Dayna [00:35:56]:

So daily living life skills. So life skills. So what’s an example. So say we were so I needed some milk at the dairy. I guess maybe not that often I have cash, but if I do have cash, I’d give her the cash. Or she wants an ice block, or say, well, here’s the $10. You buy you both an ice block and work out how much you’ve got, or if you’ve got any, or if there’s something she wants at the warehouse. Two for ten or three for 15. Trying to make them work it out. But they actually do a really good program at school, year five and six, and they have to buy a house through the ASB Bank and it teaches them to make mortgages and savings, et cetera, like that. And she’s learned quite a bit. And then the kids can make craft and sell it, like not for money, but fake money. So they kind of have a concept like that. And living skills. We try and try and keep them. Her room is completely chaos, messy, tidy, but that’s an artist’s room. Like clay all over her table. But she knows where things are. And if you go and ask her to clean it up, she wouldn’t have a clue. Like, she would start and then get distracted. So she needs a little bit of prepping. But if I work alongside her, it’s all good. Yeah. And it’s just like making sure it’s fun, whatever the activity is, and just enjoying them.

Lloyd [00:37:10]:

Is she okay with approaching strangers, like in the dairy or at the bank?

Dayna [00:37:18]:

The community shops are probably okay because we’ve been in there so often. I go to the mall, but she doesn’t like a mall situation unless she’s in there for a donut. But she won’t go to the supermarket. She hates the supermarket. Often just do that my own, which is fine. We’re online. It’s too overwhelming, too much going on. Sensory overload. Same with the mower. As long as we’re in and out, if it’s one thing we need. But even clothing. I come home with about four different pairs of pants and we find one funny. And then I’ll go back and find four. Like, she’s into cargo pants. So then I’ll go back and buy four pairs of different sizes, but shoes. She’ll tell me what she wants and it’s like guessing it. She hates all of that type of stuff.

Lloyd [00:38:00]:

So she’s not shopping for herself.

Dayna [00:38:05]:

She would go like she loves the Dungeons and Dragons shopping? Yes. Fabulous. And they do a group for under 15s. They are totally inclusive. They’re amazing, like, lots of role play. So I can leave her there. And yes, she shops up a storm in there, no trouble. Loves her, but they make them feel welcome. She’s safe and she feels comfortable in there. Yeah.

Lloyd [00:38:30]:

You mentioned about Dungeons and Dragons, so is that one of her interests?

Dayna [00:38:33]:

Loves it. Yeah, I got her into that. I don’t know how long that shop’s been open.

Lloyd [00:38:37]:

I think just recently.

Dayna [00:38:41]:

They’ve expanded. They’ve taken over two now, probably a year and a bit ago. And they used to do them at the library, actually, and then COVID hit and then they did, yeah, I think it was at Petoni and the War Memorial and then went around the like I don’t know. So then that shop opened. I thought, oh, we’ll try it out. So the first session I went along, I stayed for about half and then I left. And then one of the Dungeon masters actually has an autistic brother. So they would just make you feel so comfortable. They’re like, just go and do your shopping, whatever, the kids will be fine. And now she was like, When’s the next session? Leave me there. Really comfortable. And then I also got her into so from there it goes. You can do the Dungeons and Dragons and then now she paints the little miniatures. So she’s done a couple of sessions here, but otherwise, she’ll take them home and paint. So that’s another skill. Yeah.

Lloyd [00:39:33]:

So how did you find out that she loves Dungeons and Dragons? Or is it something that just came out?

Dayna [00:39:38]:

She kind of got into Dragons as another interest. And then kind of I was thinking, what’s around for kind of social skills? And then something outside of Mangareki, somewhere she can meet different people in a different surrounding, especially when college is a couple of years. It’s kind of like planning ahead where’s somewhere safe she can go that she enjoys. Yeah. And then she’s met actually she’s made a couple of other autistic friends and they’ll meet there. So it’s actually been really good.

Lloyd [00:40:06]:

She has friends, autistic friends. That’s nice.

Dayna [00:40:10]:

One of her really good friends. She doesn’t go to our school, but we met through was a class we done at the hospital. It was run by Clara. It was a sensory class.

Lloyd [00:40:21]:

I think I know Clara.

Dayna [00:40:25]:

She’s so amazing.

Lloyd [00:40:26]:

I mean, if I can only pick her brains, like put it in, I.

Dayna [00:40:30]:

Do a community meeting with her. We’ve got one going now, which has been really good, just so there are all the supports out there for families. She’s amazing. Yeah. It was run by Clara and then we didn’t touch base for two years. The mum gave me her number because the kids got on there and we were meant to organize a playdate. And then I lost her number and she lost hers. But long story short, the teacher at her school, it’s her niece, and I didn’t know that until late last year. And then we reconnected. So they might only see each other maybe once or twice a term and they’ll either go to each other’s house or they’ll meet outdoors or do something like that.

Lloyd [00:41:04]:

But that’s huge. I mean, if you can connect with someone, it could be your tribe. And from there you can flourish.

Dayna [00:41:10]:

And then she’s got another one up the hill that goes to another school that used to go to her school. Don’t see as much. And then most of her friends are yeah, just at school.

Lloyd [00:41:20]:

So you mentioned the clay.

Dayna [00:41:22]:

Yeah. So she loves so that was like she’s been doing clay for quite a few years.

Lloyd [00:41:28]:

Is she molding some something?

Dayna [00:41:29]:

Yeah, she does. So what happens this year she’s been drawing so she’ll draw a picture. I’ll show you some photos. She’ll draw it and then she will sculpt it. And then she went to Armageddon or last year and then this year, and then she made the costume. But it’s good therapy. So that was one when she was in a year, five, or six, her teacher. That was one of the things they would use in class. When she was starting to if something was kind of spiraling out of control, they would just pull the clay out and it would calm her right down. Yeah, it’s amazing.

Lloyd [00:42:04]:

So how did she find out she likes clay as well.

Dayna [00:42:07]:

I think drawing to so before that I bought god, I went through everything. Yeah. I think we started with soft clay. So it’s the air dried clay. And then it’s probably playdoh before that playdoh and then air dried clay. And then she was doing mindfulness classes at school and I think that’s sorry. In the weekends. And then we got into the hard clay where it baked and she got into dragons. And then she started making so it starts kind of she makes the wings. This is just like a little bit of the process and then it’s all painted up. Wow, she’s pretty good. Then it’s getting painted. So she makes the whole wow, that’s so nice. Yes. Coolie. And she makes the whole body, but I don’t think I’ve got she follows through the whole process and it’s really good for her. She’s got really amazing iron hand, but it’s a really relaxing and then she made it for her armageddon. So she drew it, made it and then she’s got the costume, which I can show you the costume because it’s on here. Yeah, she loves it. She’s really, really creative. And she ended up working at her dream job is to work at wetter workshops.

Lloyd [00:43:25]:

Yeah. Weather in the city. Did she tell you how she comes up with idea like, this is what I’m going to do now, or the concept.

Dayna [00:43:33]:

She’s only just started a concept this year. She’s got a drawing book now, and I haven’t taken any photos of them, but they’re called baby beans. And so this year it’s the hard head. And then she makes a body and it’s like wire, and then it’s wrapped. She wraps it with fabric and then it’s fluff over the top. So it’s like these animal I don’t know what you call they’re kind of these creations that she makes, and they’re all different colors and they have, like, little ears and they’re amazing.

Lloyd [00:44:00]:

How long does it take for her to finish one? Or does she do it over?

Dayna [00:44:05]:

Sometimes she does it in stages, depending on if she has to sculpt them. And then the baking is only ten minutes, but sometimes the fine details in the sculpting can take a wee while and then she’ll paint them. I don’t know. She could probably bang one out in a day or two, but over the weekend she’ll just tap away at it.

Lloyd [00:44:22]:

Right. And in terms of services from the government or other not for profit organizations, is she getting one? Like guidance on how to navigate?

Dayna [00:44:35]:

Just ask Autism new Zealand resources. No. I guess as our journey has gone by, I guess you’re surrounded, you get to know, I think I don’t know about you, but once you start doing a few courses in education, you kind of find your groove or your families, you find that you kind of do the same. So I’ve already got three really good friends that are in the same journey, so we just share. Or when the kids were younger, we take care of having tunes with each other’s kids in there, which has been really good. And then Shona was really good, Donna sister, she’d say, oh, we get this. And I was like, oh, we don’t get that, or, we get this and we don’t. So that’s probably the way we’ve had to navigate. It’s like, how come you get there and we don’t? But it’s about what you know, and swimming as well.

Lloyd [00:45:21]:

I just learned that there’s funding for swimming. Oh, is there funding for a swim? Yeah, we’re doing this. Send you the form in it.

Dayna [00:45:27]:

Okay. Has your son had an AIDS assessment?

Lloyd [00:45:30]:

What’s the difference between that? With life unlimited.

Dayna [00:45:32]:

Yes, that’s what I mean. So I only learned this since this job. So we’ve been getting it since she was five and a half. Didn’t know how to spend the money because we were like, we don’t have any family around here. I always just thought it was Kira because they just give you that, like, care support days, and I didn’t know what we could spend it on. And we go to riding RDA.

Lloyd [00:45:52]:

RDA? Yeah. He’s on a waiting list. My son is on a waiting list.

Dayna [00:45:55]:

Hopefully you can get in. So we’ve done it for, like, years there. And it wasn’t until last year, the lady up said, oh, no, you can use like, you hear a support house. I was like, no. And then when I called them up, they’re like, yeah, you have X amount of dollars a year, and if you don’t use it, you lose it. And I said, oh, what can you buy? And they’re like, Anything that will give you a break.

So we’ve bought, like, paint, like art brushes, like lots of art supplies, because up until then, we were funding it because we didn’t know and then who writing? And then I’ve heard you’re swimming and you can get some different therapies, like mindfulness, et cetera.

Lloyd [00:46:29]:

Can we use that for private therapy? The funding?

Dayna [00:46:34]:

Yeah, I think there’s a certificate you can do. But I started both of them, actually. Ava’s just finished, but Heather up in Mungarash. I’ll give you some leaflets. So she does on a Saturday morning class. And it’s been amazing. It’s just like tools and strategies on how to deal with different situations. A lot of it’s. With art, right? Yeah, art. And you might take your favorite teddy or something and you might go, this is my teddy. So it’s a bit of public speaking type of thing. It’s been really good for the kids.

Lloyd [00:47:04]:

Can you refund from five years old?

Dayna [00:47:08]:

From no, I was thinking that’s probably like $12,000. So I make sure everyone knows because they don’t tell you. And we didn’t know what a needs assessment was, and I think it was shown that said, have you had and I was like, what? Yeah, someone same with disability allowance.

Lloyd [00:47:23]:

The MSD one.

Dayna [00:47:25]:

Yes. So it’s $53, something like that. I just make sure you’re entitled to all of that.

Lloyd [00:47:31]:

Right? All of them. We never knew that they existed. Someone just told us, like, there’s this Life Unlimited. Why don’t you just check on that? It might be something that you might get a support or something.

Dayna [00:47:42]:

It’s a shame. I just think now, this is in my dream world. Once you get assessed through the DHB or wherever, if you go privately, it’s a shame. It’s not like a package going, there you go. And it has, like, unique assessment. It has parent-to-parent support groups. It has everything that you need in there and how to do it without going through the without having to make a phone call. You’re on the phone for, like, 80 minutes and then you need to make an appointment.

Lloyd [00:48:08]:

Yeah, the appointment one that’s going to take a while. And especially if you’re going through, like, hell challenges. So those challenges and now you’re overwhelmed. What should I do? And you don’t know?

Dayna [00:48:24]:

No, like explore. Yeah, explore was the same that happened. I was going to say back to that question you said before about Ava’s eating. Did she ever stop eating? And she didn’t eat for quite a few days. And I was like, I rang my GP and I was like, she’s not eating at this stage. We’d been discharged from child development CDs. Yeah, no, sorry. We might have still been with them. And then I rang them and then I honestly went back and forth. They ring GP and GP being ring them. And I was like, I actually don’t know what to do. And then Explorers busy, so I rang this somehow. It came from my phone.

There’s a lady up in Auckland, Gina Wilson, I think her name is, and she does all holistic stuff but deals with autistic kids. And I said, I know you’re an Auckland, I just don’t know what to do. And so she sent me and she said, get some dark flower remedies for her. That’ll do in the meantime. So I got them through some pharmacy in a pony. I just said, look, she’s recently been diagnosed. She’s anxious. I just went through all the things. I don’t know if it’s a placebo effect, but anyway, the next day she started eating. Don’t know, can’t tell you. But it worked. And because you do, like that’s the thing, because you’re such a weightless now, even some of the private stuff, you can’t just get straight in. It’s hard.

Lloyd [00:49:41]:

Yeah. And you mentioned anxious. When she’s anxious, then it turns.

Dayna [00:49:46]:

So when she’s anxious, like if something’s gone wrong at school, like, what’s the classic example? Probably sports. Her biggest thing, if a teacher a new teacher’s coming and they don’t know, she doesn’t understand the instructions of a game. That’s usually a big one. And if there’s no visual instructions and you’re verbally doing it, she wouldn’t have a clue. Or if she’s quite hard on her schoolwork, she scratches herself or bites. Not so much biting this year, but she does have bite marks up her arm. And that’s just because it dulls, that pain, I think.

Lloyd [00:50:18]:

So I feel like she’s visual, given the images that you’ve just shown me, and more of like, what’s that? Social stories.

Dayna [00:50:30]:

Social stories are really good.

Lloyd [00:50:32]:

It’s kind of like that.

Dayna [00:50:33]:

So if we’re going on like a school Campbell, she has a change of teacher each year. The school is really good. They’ll give you it only has to be like four pages, it might be. Ava is going into, say, room twelve next year. Next page. This is your teacher. Marto is Sam. Picture of him, picture of the classroom tour. Everything will be the same. You just need to keep it really short and simple and then they can read over it in their own time. Really helpful.

Lloyd [00:50:57]:

Right. So I feel like the instructions, when she’s given instructions, they can just use that social source. This is what you do next. And after that, especially like, if you.

Dayna [00:51:06]:

Give them it’s, even at home, I can’t give her too many instructions. Even go and get your plastic one in the morning in our houses. Go and get some socks and clean your teeth. And quite often she will remember one of them and then she’ll go, what was I meant to do? So you have to break them down into little steps. Too much. So just small amounts at one time. This is a really good an app. One of our educators put me onto it a couple of months back. It might be a little bit too young for your son. Ava doesn’t actually have a phone. She does it off this here it is. It’s called habitika, but because it’s visual, so she makes her own thing, so it’s probably not much exciting. See, this is what she’s done.

Dayna [00:51:51]:

Yeah. So they can set what they need to do. So if they read I don’t know what your son said was reading, but if they can read and then you do start my day, and then once they’ve done it all, they get like a little prize at the end and you feed like I think the reward is you feed your pet or whatever is. So it’s really good because it’s vigil, but also as they get older, it’s not coming from a parents, like, hurry up. Can you do can you do as you’re trying to all get out the door?

Lloyd [00:52:20]:

Yeah. What’s the name, sorry?

Dayna [00:52:21]:

H-A-B-I-T-I-C-A . That’s a really good one to do.

Lloyd [00:52:31]:

All right.

Dayna [00:52:31]:

As we get older.

Lloyd [00:52:32]:

Yes, he’s nonverbal, but he’s starting to learn some words now at six, which is kind of okay. At least he’s starting to say some words.

Dayna [00:52:42]:

Is he under speech-language? He is because we’ve got one here permanent and we’re bound to I don’t know when another one’s going to start, but we do hear them out of here.

Lloyd [00:52:52]:

Yeah, that’s the challenge, because when we had like we’ve been fighting for that horse funding for him, it’s really hard to get a yeah, it is. And he’s a runner. He don’t have a sense of so where does he run along the streets?

Dayna [00:53:09]:

Would he wear a watch?

Lloyd [00:53:11]:

No.

Dayna [00:53:12]:

Would he wear a pendant? Does he wear shoes or he hates the feeling of shoes.

Lloyd [00:53:17]:

He wears shoes, but he doesn’t like helmet or he doesn’t like something that.

Dayna [00:53:23]:

You can get those if you’ve got an iPhone, you can get discs. Just cheap ones. I think you get them like Harvey Norman, I mean, even reposition.

Lloyd [00:53:32]:

Are you talking about the GPS?

Dayna [00:53:34]:

Kind of. I know a mum at the school has it, so you can put them this is the thing. So you could even hide them under a shoe, under the bit where you lift out. And so if you connect it to your phone yeah, he will feel like that one. I’ll try and find the name of them. So there’s that one and then there’s pendants as well. And then, like you say, you can get space talk watches, so he would wear enough funded to get quite a discount so he can call you.

He has it obviously connected to there. And then if he runs from the school, you know, you can see where he is. But Ava doesn’t like wearing a watch. We’ve tried watch, she doesn’t run, but she doesn’t like the feeling of the tightness around here. So it depends if they like that.

There are lots of different. Ones. You can get Bengals, you can get the pendants, but sometimes they try and pull them. Yeah. And then the search and rescue that are called Wander search. But if you call that and he’d run away, it’s quite, I think, traumatizing because the police would come and he would and why is he running? Is it because it’s a sensory thing? Do you know what I mean? Is it because he’s trying to regulate himself? Yeah. Do you have a fence? Like where you live?

Lloyd [00:54:46]:

It’s an apartment. So basically we have double locked it. Now he learned how to open the door, so we have double locked it. Even at the top? At the top. So he won’t be able to reach that.

Dayna [00:54:57]:

Can you get outside? Like, is there an outside but because you can get there as fencing through the DHB, I don’t know if that would work in your apartment.

Lloyd [00:55:05]:

It’s an apartment block, so it’s a shared garden. So I said we just need to double up just to make sure that he’s not going to run or sometimes yeah, sometimes he wants to, especially during summer, because it’s he likes so when.

Dayna [00:55:21]:

He runs, does he tend to go to the same place or is it different each time?

Lloyd [00:55:25]:

Different each time. Oh, God, we haven’t experienced it because whenever he goes out and we figure out that he’s out, we eventually ask the brother to look after. So there’s always someone with him.

Dayna [00:55:39]:

That’s so quick, though. I mean, you only need to open the cabin and the goon, eh? So fast.

Lloyd [00:55:44]:

Especially crossing the road.

Dayna [00:55:46]:

The road. And they just have no road since they’ve checked out and they know where they’re going.

Lloyd [00:55:52]:

Yeah. I remember when we went when he was at the church and I think he got overwhelmed that time he ran away towards the road.

Dayna [00:56:01]:

How does he deal with the church? As in the noise? Or is he used to it? Has he got headphones?

Lloyd [00:56:08]:

No, he doesn’t like it. Okay, I wear it now. Here’s your headphone back. What we’ve done is we started bringing him to crowded places bit by bit.

Dayna [00:56:21]:

Just little baby steps and building it up.

Lloyd [00:56:23]:

Yeah. And just to make sure that, like, for example, Mall, we don’t usually go there frequently, but now maybe we can.

Dayna [00:56:31]:

Go there and just go in a quiet time. See, my choice, 09:00 in the morning.

Lloyd [00:56:35]:

Yeah. And until such time that he’s okay with it. And he’s still in the Pram. So what he does every time yeah.

Dayna [00:56:42]:

They’Re just like the way trackers.

Lloyd [00:56:46]:

So.

Dayna [00:56:46]:

No leeming on there. If you’ve got iPhones, that might be the way to do it. And especially if you can hide it in a short freeze wearing laces. Some kids rip the shoes off. They don’t like the laces, though, so that’s what yeah, right. But it might be an option.

Lloyd [00:57:00]:

Okay. So we’ll try that. And just to make sure he’s safe, because it’s scary isn’t it scary? And I remember when we were another setting which it’s kind of like a church like setting where they made some there was an event, like a market kind of thing. We went there and then he got overwhelmed.

Dayna [00:57:22]:

So made the food, probably the smells of the food, the people.

Lloyd [00:57:26]:

Yeah, the noise. And he just jumped out of I was carrying him. He jumped out of me and then started running around.

Dayna [00:57:34]:

Is there a safe space you can go at church? Is there a room that you could show him when he’s getting overwhelmed that you could set up, like a beanbag or a little tent that he could go to?

Lloyd [00:57:43]:

No. Here. No, I don’t remember having that one. I know in Auckland, when we used to live there, there’s a church where there’s a quiet room there, but they don’t have that’s why we okay, we’ll just stay at home.

Dayna [00:57:58]:

But then you miss out, don’t you? But you do it as a family, you learn. We don’t go out for dinners. We do takeaways or we do there’s one cafe in Eastbourne, the Pavilion. They’re really good there. Where we could get ice cream, walk around to the ducks, and we could get a coffee type of thing. But no, don’t do the takeaways of that.

Lloyd [00:58:18]:

You mentioned ice cream, so he loves ice cream. So what we usually do when we started with visiting the malls and stuff, we bought him some ice creams and then, okay, now you have ice cream. So can we just walk? Like, maybe just visit the mall maybe 1 hour or 30 minutes at max? Or 1 hour, maybe, so at least he can regulate, like okay, now there’s this thing called a mall, and then it’s.

Dayna [00:58:41]:

Like when you get home, you can have your iPad. There’s actually a really good it’s on my laptop, actually, and it’s a clip we’ve got it’s about a minute. And it’s about this little boy that goes into the mall with his parents. And there’s a lot that goes on because you think every shop in that mall, their music is all different sounds.

Lloyd [00:58:56]:

Different sounds?

Dayna [00:58:56]:

Yeah. There is different languages, different cultures, people bumping into you, the lighting that’s horrendous. So you think of all those noises. And then that kid and I’ve seen it in Moles. You see that kid on the floor that’s just exploded? Like, cannot take it anymore. They’re just so overwhelmed. But if you can do it, like, say, at the start or the end of the day, and if it’s like, say, baby steps, half an hour, then build it up and make it a good experience and leave while it’s good. That’s awesome.

Lloyd [00:59:24]:

Yeah. He’s now being able to handle a lot of noise, but if it’s getting over too crowded, that’s where you will find that, okay, we need to go home now.

Dayna [00:59:35]:

Does he do any other activities?

Lloyd [00:59:37]:

He just loves painting with painting is good. On his iPad, painting, letterings and stuff.

Dayna [00:59:46]:

So it’s repetition.

Lloyd [00:59:48]:

Repetitions.

Dayna [00:59:49]:

Are your older siblings good with him?

Lloyd [00:59:52]:

Yeah, they’re playing with him, but sometimes because the neurotypical kids wanted to interactions, like social interactions and it’s hard if.

Dayna [01:00:02]:

They have their friends around and then your brother’s been a pain, whatever. Not a pain, but yeah, the good.

Lloyd [01:00:07]:

Thing is they’re accepting. So sometimes, like my daughter, sometimes he pulls her hair, like unknowingly, maybe in terms of the pressure or what do you call that when he pulls the hair? Obviously it’s going to hurt. So good thing they’re not like pushing him or they’re being patient in their own way. But still, I couldn’t imagine how difficult it would be if someone would be pulling your hair with that great force.

Dayna [01:00:37]:

Because we’re going to say with that care of support money too. I don’t know, say in your little apartment. If he likes jumping, you can get the trampolines and you can get like sensory seats and stuff like that.

Lloyd [01:00:47]:

We got the trampoline. Like we bought a small one, just enough for him.

Dayna [01:00:54]:

And there’s actually a really cool chair downstairs. I think it’s an Ikea one. And so it’s this little I’ll have to show you and you put the whole shade over it and they spin around. A lot of kids like that one.

Lloyd [01:01:04]:

And we actually use that funding as well. It’s a good help.

Dayna [01:01:09]:

You can get like iPads for them too. Like we’ve done that for Ava last year and I bought her. So then I followed on from her to try and get her off the iPad a bit more too. She takes my phone and she’s really good at taking photos. So then we bought a camera. So that encourages getting outside in nature and taking the photos and then she’ll edit them so it kind of leads on, which has been good.

Lloyd [01:01:30]:

Wow. So she’s in photography now. Wow. So did you manage to get her someone to teach her how to do stuff?

Dayna [01:01:39]:

I just need her. She’s learned a lot through YouTube. She sent a couple of YouTubers that she liked these artists. And then she went to Armageddon for the first time last year. My husband took her and they’d done three rounds. He said the first tosha was completely overwhelmed and he didn’t think she’d do it. And then she loved it. And then I just took her a few weekends ago. Loved it very I don’t know if you’ve ever been, but it’s amazing for these kids. They can just be themselves. They’re all in costume, they’re all very Sci-Fi. They’re in their own little world, you know. And she had no trouble shopping there that day either. Like she bought plushies and there were swords, there was you name it, she was there for like always hates walking, but we walked for 3 hours, no complaints. So when it’s driven by her goal yeah, if I said, let’s go for a walk down the beach. We always go to the beach. Why do we always have to go to the beach? Then you buy into it. Okay. We’ll go to the beach and you get an ice cream. Okay.

Lloyd [01:02:42]:

Yeah. I remember my wife saying that. Because he has a goal. That’s why he’s like doing that. There’s this Lego truck duplo Lego and he’s trying to disassemble the Lego, but he couldn’t do it. So what he did is he just mashed it. So if you don’t know what’s happening, you probably would say like, oh, you’re destroying the Lego. But no, his goal is to dismantle the Lego, not destroy it.

Dayna [01:03:15]:

Yeah, it’s funny how they work. What is your son into? What’s his interest?

Lloyd [01:03:19]:

Lego sometimes, and iPad. He’s into painting and the pictures are in my phone. But he’s into paintings and he’s into drawings.

Dayna [01:03:32]:

We used to go to Te Papa. That was Ava’s thing, I think they used to go I used to work a Saturday, so my husband would take it every weekend. She knows that. She loves it, so always been really creative like that, I think, because you can it’s different lighting, but it’s the arts.

Lloyd [01:03:49]:

We went there and after an hour or two he started crying. So we know that he’s already over the Dowser.

Dayna [01:03:55]:

I don’t know if you’ve taken them to the Dows. Upstairs in the Dao, it’s quiet because it’s almost a room probably a little bit bigger than this. And it’s just a kid’s room where there’s like drawing and stuff. It’s quite nice if you just want to chill out for a bit.

Lloyd [01:04:05]:

Yeah, that’s quiet we’ve been there and it’s quiet and not so many people at that time, so I think it’s the timing as well.

Dayna [01:04:12]:

And in the zoo, we sued the zoo. We got passes there. That was another thing that they still enjoy, was just like the zoo and stuff. But the outdoors are really good. Loves the outdoors. Percy’s Reserve and stuff like that.

Lloyd [01:04:23]:

We went there as well.

Dayna [01:04:25]:

So nice.

Lloyd [01:04:26]:

It was Shona or Donna, I think. Who mentioned there are? Persuasive.

Dayna [01:04:29]:

Yeah, the ducks are safe. The kids just fluff around, and take some food.

Lloyd [01:04:34]:

Yeah, it’s quiet. The only concern I had is there’s an exit there towards the highway?

Dayna [01:04:39]:

Yes. And it goes oh, quite a long way. Well, quick craving to PATONY for him.

Lloyd [01:04:45]:

For him, it’s like one hundred k per hour. But that’s all right. As long as we’re focusing on him, making sure that he’s not going to run away. But he still wants to ride on his pram.

Dayna [01:05:01]:

He still likes it. That’s probably the enclosed tightness as well.

Lloyd [01:05:04]:

And he’s still in nappies.

Dayna [01:05:06]:

Do you get funding for the nappies? Yes. Good. Check that too, because a lot of.

Lloyd [01:05:10]:

Families don’t need someone just told us about that.

Dayna [01:05:14]:

Anything you’re entitled to, I say go for it. Otherwise, it ends up costing a fortune. You pay it up and you tax.

Lloyd [01:05:20]:

Yeah, and it’s a lot like how much does it cost for one pack of snappies? Any advice to parents, especially those who are just learning about undergoing the autism journey?

Dayna [01:05:33]:

So there’s an app called as Detect and it’s up to 36 months. So it’s good for like, plankton. It won’t obviously tell you your child’s got autism, but it’s a good way to track. So you have the information there to give to the professional, but later on so there’s that. So if you’ve just come and I’ve just had an assessment, what would I recommend? It takes a wee while to get your head around, but good support network. Like, there’s parent to parent. We do autism. New Zealand there’s FAMS course. So that’s our two day insight to autism and some great strategy. So diagnosed, undiagnosed professional, anyone can go to that. So we have that.

We have tilting the seesaw. I don’t know if you’ve done that with your son’s teacher, so that’s parent, teacher, either senko or teacher support, whoever it is, and you work as a team, obviously, and find the strengths and weaknesses with your childhood. But it’s adapted for everyone in the classroom, not just the autistic kid that’s Moe funded. And then we do a way to play. So tilting the Seasaw is two days. Sorry. And the way to play is one day. And that’s for kind of I think it’s zero to eight. And it’s basically how you can engage joyously and play with your kids instead of seeing that kid that runs up and down the Kindy fence and the teachers are all inside because they don’t know how to handle it. But if you’ve done that for 8 hours, it would be a bit boring.

So how could you interact with them? And yet just even if it’s a snippet for five minutes every now and then to engage in the learning, and then we do tailored programs as well. So if there was a workplace, for example, that was struggling or there’s a lot of neurodiverse people in there, there’s a trained team member that could go into that supportive. So we can as an outreach, we can go into like, support school meetings for the family. And I guess we’re just here if there’s any questions as well. Like for far now and just connecting them to the right services is what.

Lloyd [01:07:34]:

My role is and services and support and some other stuff like network.

Dayna [01:07:42]:

Network, yeah. And also, even if they have been diagnosed for a few years and they want to know, like, there’s an employment service we do as well, or just any questions? Transitioning into different schools.

Lloyd [01:07:53]:

You mentioned about parent to parent. I remember my wife saying there’s like a monthly meet-up with them do it.

Dayna [01:08:01]:

And I think it’s every I could be wrong. I’m sure it’s every second week in Lower Hut. I know it’s in Jeff and Evelyn and she covers it’s not just autism, it’s every everything. Yeah, all different disabilities. But it’s good, I guess, if you don’t know much about whatever your child’s going through, and you just need that support, like, around parents that are on a similar journey, it’s really good. So it’s parent to parent and then we have autism connected through autism. New Zealand. So that’s our online platform. So if you’re busy, it’s every second Wednesday, one to 130. So it’s a parent support group, and then there’s an autistic one as well. And the parent support group, there might only be three or four. And there’s always an outreach. So any questions or just connecting with?

Lloyd [01:08:46]:

People and it’s safe and everyone is welcome.

Dayna [01:08:49]:

Yeah. All you got to do is register online and come in.

Lloyd [01:08:53]:

Quite good.

Dayna [01:08:54]:

And then there’s a few social groups going. There’s a couple run out of here, minecraft and an adult social group. So they run out of here, but not actually run by Autism New Zealand.

Lloyd [01:09:04]:

All right. What is autism for Dana?

Dayna [01:09:07]:

What is autism for Dana? So it’s unique empathy. There’s lots of love, kind, creative. Where is my question here? Caring, fun. Like, even if you, say, had a meeting with your child and your child is present, just got to remember, because they’re autistic, they can still hear what you’re saying. So quite often you’ll get, say, a teacher and a parent and the child they’re talking over and it’s actually they do understand what’s going on. And once you’ve met one autistic person, you’ve met one autistic person, like, everyone so different from the next one that you meet.

What were you going to say? I think we’ve autism new Zealand’s employment program. Yeah. And then there’s UBI College, which is based on Wellington train station, so they can go there from 16. So they do mixed media. There’s lots of it. Security. There’s lots of different options. They can learn in very small classrooms, like maybe ten per class. And a lot of families that we get, we’re finding, like the children I find between 15 and 17, they’re getting to that, but with pressures on for exams. And you got to be really careful of burnout.

So some of them take the children and they’ll either do, like, a couple of days dual enrollments who summit to Kura. So they’ll pick their favorite subject so it can be done at home and then, say, two days at a college because they just get so overwhelmed by it all. So it’s just learning to make sure that they recharge a little bit.

Lloyd [01:10:53]:

Yeah. So when you say recharge, do you have any in particular that they can start doing, like, meditation?

Dayna [01:10:59]:

Yeah, whatever they’re into. I’m just thinking for Ava, she loves nature, is really good for her, and we would cut back, like playdates. Just giving her time to herself. So just to reach her, making sure she’s having enough sleep, obviously eating a bit better. So it depends what your kids into if they’re a runner, obviously they might like to run the hills. It’s just the away myself, if I’ve had a stressful day, I like to walk the hills. I love walking or listening to music. So it’s whatever, I guess your child’s into, like art, painting, drawing, whatever, swimming.

Lloyd [01:11:37]:

Or we can probably drop him off the Weltech, you know, well tech. There’s a big field there like, okay, go run.

Dayna [01:11:43]:

Yeah, run up and down. And sometimes that’s all they need. Just to destress.

Lloyd [01:11:47]:

Yeah.

Dayna [01:11:48]:

And then just making sure. I think being a parent open and I don’t know, I’ve always been quite open with Ava, so hopefully, hopefully as she gets into adulthood, that she can come if there’s something wrong and we need to have a conversation. She doesn’t feel ashamed or embarrassed or whatever.

Lloyd [01:12:05]:

As long as she’s open to you.

Dayna [01:12:07]:

Yes, that’s right. And we’ve got a couple of mums up the hill that she’s quite close to, so it’s kind of nice that if I’m not here, she can load off to those as well. She feels safe.

Lloyd [01:12:18]:

Any final message that you want to say to parents? And especially when it comes to strategies and some stuff that I guess just.

Dayna [01:12:27]:

Educate and don’t be afraid to reach out. Like, no question is a silly question and I think connect with us. And we’ll always let autism New Zealand, if we don’t know the answer, we’ll find the right one. But I just think for me, it was like the more I learned and made our house run smoother because then I could understand. So never change the autistic person. It’s the fana and family around that need to educate themselves, so we’re the ones that need to change for that person.

Lloyd [01:12:54]:

Yeah. Did you feel like I don’t know, what words should I say? When you found out that your child has autism, what did you feel?

Dayna [01:13:02]:

Max I was relieved. But then I was like, I remember waking up the next day and I was like, she’s changed. But she actually hadn’t changed. There were so many. And then I was really happy because I knew I could get support, but then I was really angry because I was like, this has been going on when I look back, and none of the professionals had kind of picked it up. And then I was like, oh. And then I did worry. I was like, Is she going to be living with us all her life? And how can we make it independent? How can we make her have a fulfilled life? So there was all of those kind of barriers, but then you talk to people around and I mean, you see some of those famous people, like Chanel here, like Amazing, two books, author and amazing. She’s two books she’s just written. IP that’s another one she’s just done. I m ADHD. It’s due to come out in June, I think, July. And she’s our advisor, which is great. So it’s great having someone like that on board in this situation.

Lloyd [01:14:02]:

How did the dad felt back then.

Dayna [01:14:06]:

For such a long time? No, I think we were all like the same. We were like and I remember friends saying, and I hate this comment, she doesn’t look autistic. It really drives me like I want to punch them in the face. And I was like, So what does she look like? I don’t know what I don’t know what the answer is to that either, because I don’t know what naughty meant to look like.

Well, she looks like she’s coping beautifully. And it’s just like I remember when she was young and she’d have the meltdowns and I guess parents, even they didn’t maybe didn’t understand, they didn’t know what to do, and they’d be like, patting her in the back. I was like, no, just leave her, just give her space and she will be fine. But the more you obviously you interact with her, it worse, it escalates.

Lloyd [01:14:49]:

Do you think we just need more awareness across the board, regardless of who you are?

Dayna [01:14:54]:

Yeah. And I guess if you didn’t know anything about autism, if you didn’t have it in any of your family members, never worked with anyone that was autistic or neurodivergent, you wouldn’t have a clue.

Lloyd [01:15:04]:

Yeah, you wouldn’t have.

Dayna [01:15:05]:

And you just assume any disability, anything.

Lloyd [01:15:09]:

And there are a lot of anyway.

Dayna [01:15:11]:

You’re going to change it. You can’t go back to something that happened in the 1980s or even the 70s, where they were in like an IHC home and there was nothing like you need these people to have amazing skills.

Lloyd [01:15:23]:

Yeah, they can I mean, they are so clever. If I put it this way, they are now taxpayers. I mean, if that’s what they wanted to hear if I will be honest.

Dayna [01:15:33]:

That’s what I mean, actually, because that’s the hard bit for a lot of them the whole job interview. The process is so overwhelming for them and they don’t know, but that’d be amazing. Do you know, I what mean, you look at their skill set, but it’s just getting them through there and they’re focused and having an understanding. I mean, if they can work from home or if they can work on a desk with no light or no sound near the noisy fridge or whatever it is. Do you follow Tony Atwood and Sulaki? Yeah, they’re good. I always get late. They have some pretty cool things.

Lloyd [01:16:09]:

Yeah, that’s where I heard about the gifts and surprises that if you’re going to a party with an autistic person, make sure that you mention what’s inside, because usually they don’t like surprises like that.

Dayna [01:16:24]:

I was going to say for your sunlight, for school holidays, if you guys need a bit of a break, there is a school holiday program in Karori and it’s through the Intervention Trust, autism Intervention Trust. I don’t know if you’ve used it, but at Dias Street in Lower Hutt. There’s a guy there, Moses. He’s called pride lems. He is amazing. So he wants all these different disabilities to come in. And they do amazing things. They’re off tablets, real old school games. But yeah.

Lloyd [01:16:59]:

Okay. Maybe I should interview him.

Dayna [01:17:01]:

Yeah, he’s oh, God, he’s amazing. Yeah. I’ve had quite a few meetings with him. I can give you his details. I’ve got some of his stuff downstairs.

Lloyd [01:17:08]:

Yes.

Dayna [01:17:08]:

Yes, please.

Lloyd [01:17:08]:

Please. I guess that’s it for now.

Dayna [01:17:11]:

Okay.

Lloyd [01:17:12]:

Thank you for your time.

Dayna [01:17:13]:

Yeah, that was cool.

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