No. 33 Lloyd I AM

Recorded on September 2022

Transcript:

[00:02:37.940] – Jesil:

Welcome to special episode of Culture Connection, an award winning show based in Lower Hutt here in Aotearoa, New Zealand. My name is Jesil Cajeses. I’m the radio host for Culture Connection every Mondays from 6 PM to 9 PM. But today we are having a very special guest, a special episode, and we would like to welcome a really special parent. His name is Lloyd, and he’s with us today. And we’re going to have a curial with Lloyd, who is the founder of Takiwātanga. And I will let Lloyd explain what this means. So Lloyd, how are you?

[00:03:17.990] – Lloyd:

I’m good. And thank you for having me here. It’s a pleasure. And I really appreciate the attention that I got from you about Takiwātanga and about autism.

[00:03:28.220] – Jesil:

Yes, it’s really amazing. I have seen your work first on social media, and you have interviewed a lot of people in position about children or people experiencing the journey of differently abled, we call it autism in this episode. So we’re going to talk about autism. First, briefly tell us about yourself.

[00:03:54.680] – Lloyd:

My name is Lloyd and I am from Philippines. We migrated to New Zealand in 2013. I have three kids. The first child is born in Manila. The other two are born here in New Zealand. One in Auckland and one in in Wallington, Family of five and we live in the hutt.

[00:04:18.320] – Jesil:

Wonderful. And how old are your children?

[00:04:21.960] – Speaker 2

Ten, seven, and five.

[00:04:24.060] – Jesil:

So they’re still in their primary years, the five years old and then seven years old. Now, can you help us understand what autism is?

[00:04:34.690] – Speaker 2

Autism for different parents, may mean differently,, but in my own definition, and I’ve learned about this as well along the way when I was doing this learning autism journey with my wife. So one autistic person is just one autistic person. And autism, if we are going to think about it in a clinical way, it is an autism spectrum disorder. And it’s a challenge among children and adults who are on the autism spectrum in terms of cognitive with their social skills, challenges on communications, and things like that. In a human behavior or human factor, autism is just people thinking in different ways. So it’s like you have an iOS versus an Android phone, two different operating system, and two different brains thinking in different ways. So that’s autism for me.

[00:05:36.970] – Jesil:

Let’s dig deep on a personal level. You are the father of an autistic child. Tell us about your child.

[00:05:46.360] – Speaker 2

So my son, he was born here in the Hutt. When he was three, he was diagnosed with autism spectrum disorder, as we call it, or autism. Before his diagnosis, we noticed some different challenges. He’s not looking eye to eye. Whenever we call his name, he’s not responding in communication between me and my wife. Whenever we talk to him. It’s like he’s living in his own world, should I say? So he’s living in his own world, and it’s very challenging for us. He wakes up in the middle of the night, and once he wakes up, it’s difficult for him to go back to sleep because we never knew that he has sensory needs that we need to address at that time. And he’s nonverbal. He doesn’t talk.

Yeah, communication is a challenge. It’s a barrier. Along the way, when we found out that we’re having challenges, being a Filipino, obviously, we will not go to the GP or not go seek for expert opinion. We will try our best to cope up with him and try to find out what’s wrong with him because it’s not a typical… Because I have two other kids. It’s not me comparing my children.

It’s just like it’s not a common behavior that we found out about him. So we tried using Internet. We don’t know about autism at that time, but we tried to say, he’s doing this behavior, doing Google. What does that mean? And so on. So it took us a while before we finally come on, let’s just go to the GP and ask for help.

[00:07:33.780] – Jesil:

Pre diagnosis, that was from 0 to 3 years old. What were the most difficult challenges, apart from him being nonverbal? What were other things that you were experiencing?

[00:07:51.920] – Lloyd:

Communication is the biggest one because we don’t understand or we cannot figure out what he wanted to do. I mean, if he’s hungry, we would never know. But we have this cycle of breakfast, lunch, and dinner. We know that he hasn’t eaten at that time, so he needs to eat. And safety, he has no safety awareness.

So he will just run if you put him in an environment that is not familiar for him. He will just run and head towards the road, and he’s not going to look left, right.

[00:08:28.590] – Jesil:

In terms of his spatial awareness, what was he like at the time, at the age of three?.

[00:08:36.110] – Speaker 2

When he’s playing, he’s playing by himself. He can play by himself, but he’s not going to engage with his brother and his sister. So he may be playing, but he’s just going to… We call it parallel playing. So brother and sister are playing. He’s playing here beside them, and then he’s just going to… He’s not going to mind them. Okay, you’re just playing and I’ll play by myself as well.

[00:08:58.690] – Jesil:

So there was least social interactions?

[00:09:00.490] – Lloyd:

Yeah, then it’s still communication. It’s very difficult to get what he wants to get. And even if he has goals, like he wanted to reach out for something, he’s not going to tell us. If he’s hurt, let’s say he’s running and then he got himself bruises, he’s not going to cry. So you wouldn’t know if it’s… There’s no way for us to know that he’s got bruises or he’s got cuts on his skin.

[00:09:29.890] – Jesil:

Now, let’s go to diagnosis. When and how did you find out that your son has autism?

[00:09:37.570] – Lloyd:

When we are already worrying about him because we couldn’t figure out what his needs are. So we went to the GP and the GP has suspicion, but he cannot confirm that that is autism. Not that he’s not aware about autism, but there needs to be another confirmation going to experts like pediatrician. So we were referred to the DHB for reassessment.

It took us a while before we get that reassessment from the DHB because we had the lockdowns and then we had this long waiting list. So we cannot just go there, go to the hospital and ask for an expert because they’re not going to allow that because there’s a waiting list and we have to do it in a way.

[00:10:31.280] – Jesil:

Right. So that’s one of the challenges navigating the system, the support. Let’s come back to that later on. In terms of what was it like for you when you found out that your son is differently abled?

[00:10:48.190] – Lloyd:

I asked the same question with my wife because I’m trying to compare how my feelings are with her. I mean, of course, every night you need to have some conversation about things happening within the family. How did you feel when you found out that son is autistic? And then she said, Well, I am already aware about that. And maybe I just accepted it and moved on so I can give the support that he needs.

I was telling her, did you know that for me, being the father and I’m the only one working for the family, I’m already thinking about how can I support this child? I’m already worried. If there are problems, what should I do? Me being the father, I’m now worrying too much and my wife is just, Come on, relax. We’ll deal with it.

So I’m worried about that. I just followed my wife’s path as well. Okay, I’ll just accept it and let’s just focus more on how we can support our child and our kids in general as well because we cannot just focus on one child because we have other two as well who are also requiring attention.

[00:12:02.890] – Jesil:

How did you tell the news to the family or to people around you? First, let’s talk first to your children, to the other two children.

[00:12:12.720] – Lloyd:

The good thing about that is when we told my daughter and my son, the eldest one, they are accepting. They have awareness, but we keep on telling them he’s just the same as you two children. He just thinks differently. So we just keep on telling them that if there’s this special attention that we’re putting to Mo, keep in mind that we all need to support your brother in this journey and don’t be jealous about it because he just needs support and we just need to make sure that he is able to get the right skills for him to live.

[00:12:55.680] – Jesil:

Let’s talk about being a Filipino and having autism because where I come from, I think we both share the same culture. We both do that. It’s not really well explored in the Philippines and I think for other cultures as well. We try to minimize it and label it differently. What’s your thought around that?

[00:13:22.980] – Lloyd:

Growing up in the Philippines, sometimes I’ve experienced people who are being labeled like I don’t know, maybe…

[00:13:31.450] – Jesil:

Like “sutil”l or naughty.

[00:13:35.010] – Lloyd:

Before when I was in the Philippines, I thought that they are okay. They’re probably just a “sutil” or naughty Filipinos or naughty kids. Knowing what I know now, I just realized different people think differently. And children who are probably doing those naughty things probably are experiencing some sensory challenges. That’s why they’re doing what they’re doing. Not because they want to do it, but because they are experiencing, let’s say, it’s too noisy. If a child experiences a sensory overload and it’s too noisy, a child can potentially break down. For other parents, that might look embarrassing. But at the end of the day, in me trying to figure it out, at that time, probably there’s just something that is going on internally. And we just need to understand that situation at that point in time.

[00:14:27.170] – Jesil:

There are a lot of stigma and discrimination around differently abled children, especially in your particular situation, what you’re in. How do you overcome them?

[00:14:44.150] – Lloyd:

Pre 2017, when my son was born in 2017. So basically after everything, we found out that he has autism that has changed our lives. But before that, for me as a human being, we tend to judge people. I mean, that’s the thing.

[00:15:03.210] – Jesil:

We usually… It’s like a default reaction.

[00:15:05.690] – Lloyd:

We judge people because of their action to some, or because of their reactive action, reaction to some instances. But knowing what I know now, it has changed my perspective that people may have been behaving badly because there is a reason behind it, because they are experiencing something internally that we are not seeing visually.

[00:15:35.010] – Jesil:

Let’s talk about navigating the system. This is now post diagnosis. What were the challenges you encountered when you were seeking appropriate support for your child?

[00:15:49.020] – Lloyd:

The journey is always challenging, especially for parents who are trying to seek help for their children. So the challenge is e started when we are seeking the diagnosis because of the long waiting list.

Science says early intervention works, and early intervention is best for children on the autism spectrum because you can intervene on their learning abilities and the support as early as possible so that we can support them to live the life that they wanted to live. But the problem with that is we have long waiting list, and the more we wait, my child will not wait for that. He’s not going to wait for that assessment. He will continually grow up. And my concern is he’s missing the opportunity to learn the skills that he needs as he grows up. So that’s one challenge.

Once you get the assessment, the next challenge will be getting the right learning support. I call this one left and right wing, not on a political way, but left and right wing is because we have health and learning. So if one fails, then there’s no opportunity for learning. Let’s say you’re not in good health, you cannot learn something about life.

If you are, let’s say, feeling sick or you just need to rest, it’s two or nothing. If you have challenges in education, so same thing. You won’t know what is a good health if you don’t know that or no one taught you about good health, something like that. So it’s just my concept.

So after we have received the formal diagnosis, now we have started seeking for the learning opportunities as well. Parents will need to talk to… They will need to speak to the teachers and be honest about the situation. And then they will guide you and support you to navigate you through the Ministry of Education side of things.

So that’s the learning part now. And the challenge in the Ministry of Education now is still the waiting list to be able to get the support. And once you are able to get that support and you need additional support like the ORS for additional teacher aid. ORS is a big challenge for parents.

[00:18:19.660] – Jesil:

Tell us about ORS.

[00:18:21.680] – Lloyd:

ORS is an on-going resourcing scheme. This is a program, if that’s the right term that I’m using. So this is a program from the Ministry of Education, so they can support your child on the learning. Your child will have very high needs requirements for learning. So they will be providing you, let’s say, for example, teacher aid. So whenever your child goes to school, your child will have teacher aid to support the child in learning because the assigned teacher of the class won’t have additional capacity to just look after one child.

Say my son runs away, so the teacher at the classroom will not go after my child because how about the rest of the class? So we’re requiring for additional teacher aid because he needs learning support in terms of his focus on learning. That makes sense? So he needs someone to teach him, basically one on one, about the class and about learning as well in that class. So I hope I’m telling that correctly, the terminologist.

[00:19:27.350] – Jesil:

So let’s unpack that a little bit to simplify it. The first step you have to do, of course, you went to the GP, and then the GP referred you to specialist. Is that correct? And the specialist will do the assessment. How long did it take you to be assessed?

[00:19:44.400] – Lloyd:

The waiting time took us a while because almost a year. I heard some people are being assessed for more than a year. I don’t have any information about that. But from.

[00:19:55.830] – Jesil:

But from your experience, it was a year for you.

[00:19:58.120] – Lloyd:

Yeah, plus because maybe of COVID, lockdowns, and waiting list. I think when I did the follow up, the waiting list has blown to up to 250 plus.

[00:20:10.440] – Jesil:

So how are they going to determine the priority of those waiting lists? Is it by first come, first served basis, or is it by, I guess, like what you said earlier, very high needs to medium, low needs? Is it like that, or it’s just who comes first? Who was referred first?

[00:20:27.840] – Lloyd:

In my view, it is based on either who comes first or the needs because our GP said that I will put a note here that they need to assess or they need to see you as soon as possible. But again, that’s not a guarantee.

[00:20:44.070] – Jesil:

Every.Single GP will put there as soon as possible. Now you.Will have to compete again with all as soon as possible. So we don’t know that. It’s like a grey area for sure. So there is a system. Okay, my child has autism. I am going to send my child to preschool because he’s three. So we now go to preschool. Now your challenge is actually about who is going to support my child because, of course, you’re not going to be there.

You’re not going to be a parent there. The teachers are not really specialist in dealing with children with specific needs like your son. Now you are going to involve the Ministry of Education specifically for support. And that support is basically just like what you said for their educational needs. Is that all the support that you need? Or this specific person that will be sent to kindy or where your son is, are they trained to support your son for routine, for educational expectation? Is that just one or do you need a bundle of professionals to be able to help your son, or is it only one person?

[00:22:07.690] – Lloyd:

In my case, when we were at the Kindy, there are only a few teachers trained or have experienced training about autism and how to handle kids. That’s as far as I’m aware. But I think they’re trying to change that now because they’re trying to send staff to trainings. And a lot of the teachers that we have spoken to, they are eager to go on training, even just autism one on one training. They are super eager to learn about that because they have met my son and they are curious about it. But as far as I’m aware, not everyone in the kindyre trained, as far as I’m aware.

[00:22:51.290] – Jesil:

I’m aware. So your son goes to kindy, is that right? He is.

[00:22:54.940] – Lloyd:

He is now in primary.

[00:22:55.390] – Jesil:

So your son goes to primary school. And with that ORS, will it carry on to primary or you have to apply again through Ministry of Education to have another support when they go to primary? From kindy to primary.

[00:23:11.040] – Lloyd:

So here’s what happened that time. So when he was at Kindy, because he was already allocated with learning support, which was an SLT.

[00:23:21.450] – Lloyd:

He was allocated with an SLT, and then the SLT will work with parents, one on one with parents, to make sure that there’s a plan in place.

[00:23:29.610] – Jesil:

That’s correct.

[00:23:30.290] – Lloyd:

So if the SLT based on his or her, depending on who’s your SLT is, if they think that your child will require an ORS funding support or additional support, they will be the one to initiate that.

[00:23:45.120] – Jesil:

All right. So they will apply the funding, they will help you. Okay. But the.

[00:23:51.350] – Lloyd:

But the funny thing is, in our case, we learned about ORS from other parents who are attending an autism one-on-one training. And then they told us about ORS, and we were never aware about that until that time. And then we were the one who told our learning support that how about ORS? Because we needed support for that, and how can we leverage on that additional support, then they said, oh, yeah, we can try that.

I was a little shocked at that time because our support team should be the one advising or recommending us what to do.

[00:24:34.940] – Jesil:

Showing you the pathways to be able to access support. So what’s the difference with ORS and the SLT? I just don’t quite get it. You seem to project that ORS is really important. Tell us about ORS and how it affects the support to you son.

[00:24:56.000] – Lloyd:

I forgot to clarify, SLT is a speech language therapist. First, you will be assigned with the learning support. When you’re assigned with the learning support and they see that your challenge as an autistic person is on learning, like for my son, its communication. So it means that he requires the skills of a speech language therapist. And then from that on, we will be assessing or putting a plan in place.

And then ORS just came into the picture because there’s additional support that is required. The plans that were recommended at that time are not working, and he will need a more robust support.

[00:25:43.580] – Lloyd:

Learning support, especially language therapist that the support on that one is not like full time at school.

[00:25:49.080] – Jesil:

Of course, they have specific time to come, maybe four times a week or once a week for two hours.

[00:25:56.710] – Jesil:

So the ORS will give you more, is that what you’re saying?

[00:25:59.830] – Lloyd:

So in his primary, that will support him in his learning development because he needs a one on one support so that he can cope up with other children.

[00:26:14.560] – Jesil:

So there will be a lot of people. There may be one or two people that will be involved depending on what he needs in the primary?

[00:26:22.980] – Lloyd:

Potentially.

[00:26:23.800] – Jesil:

Or is this permanent? Is that correct?

[00:26:29.030] – Lloyd:

As I’m aware, once you get approved, you will have that funding until you get 21. That’s the problem because not everyone gets it and not everyone requires that funding up to their age of 21. My concern is I understand for those who have very high needs, they may need or require that funding up to the age of 21, which is I don’t have a problem with that because that’s a very high need and everyone has needs.

And for those high needs, in my view, if my son is able to learn the daily living skills that he requires so he can live as a common human being as well. And then he may not require that funding until he gets 21. But the problem right now is once you get it, you get it until 21, and now they are capping it until certain people only.

[00:27:33.250] – Jesil:

When you say certain people…

[00:27:35.380] – Lloyd:

I don’t know how the criteria is, but there was a news from The Herald that was raised as well in relation to that. And it was mentioned there that the ministry is capping the funding. And then I never heard of the ministry going against that news. You know what I mean? If it’s not true, then you should ask that news to be put down because it’s false.

[00:28:02.400] – Jesil:

Or to retract it publicly.

[00:28:04.770] – Lloyd:

Yeah, but it’s still there. So which mean?

[00:28:08.760] – Jesil:

For you at the moment, the ORS is still ongoing application. You don’t know yet the outcome of this. Is that correct? Or you have been approved? What’s with your situation at the moment?

[00:28:21.270] – Lloyd:

Right now, we have initially applied and we had received the review. And then it was a decline for certain reason. I asked for an OIA.

[00:28:33.560] – Jesil:

Official information act basically asking all the communication pertaining to a specific application so Lloyd will be aware what’s happening.

[00:28:46.280] – Lloyd:

So I asked for an OIA from the Minister of Education on how they review ORS. And they say that they review that thoroughly with experts and they review that in a way that is equitable for children or people who require support.

[00:29:02.420] – Jesil:

If really the criteria or the ceiling is equitable, is it equitable? Is it equitable based from the information that you have obtained? So there are other ways to go around it.

[00:29:18.330] – Lloyd:

And then what was written in there is that we wanted to provide an equitable education, especially for those who are in very high needs. And like I said, I totally understand if it’s a very high need. But what are we planning for those who are in…

[00:29:34.510] – Jesil:

Next in line. Even those who are… Say, for example, there are only funding 14, but what if your child is 9.8?

[00:29:45.340] – Lloyd:

Right. And then what if especially those who are on a mild spectrum, they still need help? They still have needs. That’s what I was saying. You don’t need to give them the funding until 21, especially for those who are mad because they can cope up. Why can’t we support them in some other ways? What other ways is that? I don’t know. We were not informed if there are other ways.

[00:30:06.590] – Jesil:

It could be an advocacy for you, Lloyd, to actually put forward that even if my child is the next in line and just missed out because of the very high need criteria, maybe you can help us. But not necessarily until the child turns 21. Basically in the interim, making it a temporary relief or support at this stage. But let’s go back to your son. He’s now at the primary school. Does he have support at the moment? What support? And if he has support, what support is he getting?

[00:30:45.220] – Lloyd:

So he’s the funny thing. So he’s getting a teacher aid. He started going to school for three hours versus his peers who are going to school for six hours. So basically it’s for you to decide if he’s going to be delayed or not on that three hours versus the six hours. But he started to go there with teacher aid.

[00:31:06.780] – Jesil:

This is every day, three hours? Or it’s on.

[00:31:09.310] – Lloyd:

A specific day? They extended it for another one hour.

[00:31:15.110] – Jesil:

Every day, Monday to Friday.

[00:31:17.050] – Lloyd:

But still, what’s going to happen with the other two hours? There’s no plan for that. What are they planning to do with that excess, with the lack of that two hours? He’s at school and he started going there for three hours. And the funny thing is they have approved an emergency funding for him coming from the Ministry of Education for his teacher aid. The same Ministry You get what I mean? The same Ministry would decline. They say they have requested for 18 hours, but it has become 15 hours, something like that.

Anyway, the funny thing, as I was saying, is the same Ministry who approved the emergency funding has declined. I understand they’re coming from different teams, but are the teams inside the Ministry talking amongst themselves that we have approved this funding because they needed it versus the ones who are assessing the awards. I don’t know. So that’s a little confusion.

[00:32:22.350] – Jesil:

So that’s quite a difficult system to navigate for a lot of people, not only for migrants, but I guess every single person that is in your situation, although the spectrum may vary. So that is a challenge. And I think it will be an on-going challenge, Lloyd. So right, to recap that to our viewers, basically, right, it starts with assessment. Assessment takes time, it depends. And we don’t know how long it’s going to be.

Even if the doctor puts as soon as possible, it doesn’t guarantee Lloyd has waited for one year before they got their assessment for his son. And then when the son went to kindergarten at the age of three, they didn’t have to apply for funding from Ministry of Education. And that funding basically depends on how much they can approve. And it will be assessed as well based on the child’s needs. It could be a speech language therapist, it could be a behavioral needs, and all sorts of things. So for Lloyd’s situation, the son was nonverbal, so teaching that child to actually communicate nonverably.

By the way, Lloyd, can he communicate now? When he was at candied? Did he have some words or is it just better in expressing through nonverbal cues?

[00:33:49.070] – Lloyd:

He has words, but if he’s going to speak to you, it doesn’t mean anything. I mean, it’s a word word because maybe he’s seen his brother watch a video or something that he picked up. That’s one of the traits of the autistic person. Sometimes they picked up and then they just… They just. Repeat it. But not.

[00:34:08.910] – Jesil:

Necessarily it’s a form of… Comprehension.

[00:34:11.270] – Lloyd:

Yeah, not necessarily it’s a form of communication.

[00:34:13.940] – Jesil:

Or a functional communication there. So basically, when the son went to kindergarten, he had an individual educational plan which involves the speech language therapist. And now the problem and the challenge then shifts when the child went to primary school because, of course, he will need continued support. And there is another support that the government funds, and that’s the ORS that Lloyd just talked about. However, they were unable to avail that support due to ongoing reasons why we can’t tell you at this stage because it’s still an ongoing research at the moment. But anyway, the son is now at primary school. He has his teacher aid for three to four hours. Did you apply for that emergency funding? No, the.

[00:35:12.120] – Lloyd:

School helped us. I mean, yeah, that’s right. That’s why we’re so grateful to have him at that school. And they help us apply for that funding and they are very supportive. So how did you.

[00:35:25.010] – Jesil:

Choose this school? Did you choose it because of their affinity to support children with different ability, or was it just convenient for you at home? How did you choose that? At first it’s.

[00:35:37.130] – Lloyd:

Convenient at home because it’s near the house.

[00:35:40.100] – Jesil:

So let’s just use the word mainstream. So it is a mainstream school. Is that right?

[00:35:45.820] – Lloyd:

I Don’t think we have a special school here. Now that I’m aware of, my wife did some research and most of them or all of them, I’m not quite sure if they are in South Island, but most of them are in Auckland.

[00:35:57.650] – Jesil:

So it’s even if there is in New Zealand, you still can’t do it because you are in well, in turn, obviously. And would be hard for you to move because you want it.

[00:36:08.430] – Lloyd:

You’re going to uproot everyone. My other two children are already thriving here. They are thriving here. And you’re working here as well.

[00:36:16.480] – Lloyd:

Yes. And that’s what I was trying to express a while ago. We have three kids and our focus is not just with the one with special needs. We also need to look after the other two and we need to consider their feelings as well.

[00:36:29.730] – Jesil:

That’s right.

[00:36:31.020] – Lloyd:

That’s why we don’t want to move just for that.

[00:36:33.370] – Jesil:

And now, moving forward, your son is now having a teacher aid for four hours a day. And then what does it look like for you moving forward? Is there certainty of support? I hope so.

[00:36:49.990] – Lloyd:

I’m very excited about the introduction of Whaikaha when I spoke to the Minister.

[00:36:56.900] – Jesil:

So what’s Whaikaha?

[00:36:58.290] – Lloyd:

The new Ministry, Ministry for the Disabled. This is the new Ministry that was introduced during the first of July. Given the introduction of the new Ministry, I was able to get a chance to talk to Minister Porto about some concerns that I wanted to raise, especially with ORS. And she’s pretty much aware about that happening. And she will be talking to other ministries as well to improve the support that other government agencies are providing to people.

[00:37:32.080] – Jesil:

So you’re quite hopeful?

[00:37:33.040] – Lloyd:

I’m still hopeful.

[00:37:36.060] – Jesil:

Would you consider that the support that your son is getting at the moment is enough?

[00:37:40.310] – Lloyd:

To be honest, if I would be honest with myself, no. And for the fact that he’s only going to school for a certain time, not full time. And basically, he can learn, but he just needs additional support. And given the time allocation for him at school, and while his peers are learning full time versus only a few hours, four hours, let’s say five hours at max, including lunchtime, let’s say that’s happening still, I don’t think it’s enough. It’s really.

[00:38:18.150] – Jesil:

It’s really not equitable, isn’t it? Yeah, it’s.

[00:38:19.540] – Lloyd:

Not equitable. I mean, if government agencies are really promoting equitable health, equitable education. It’s not equitable. No, it’s not. We’re only looking at the very high needs. Again, I keep on saying this is going to sound bad, but I understand the ones with the very high needs are requiring support, which is totally understandable. But how about the rest of the ones who are not in that spectrum of high needs, those who are mild, those who are medium, or whatever category you want to categorize that. And of.

[00:38:56.180] – Jesil:

Course, that means that your wife has to stay home to take care of him. Is that correct? Yes. When he doesn’t go to school.

[00:39:03.250] – Lloyd:

She doesn’t go to work. She brings the child or my son to school every morning and that’s about it. And then picks him up in the afternoon, 1 PM or 1.50..

[00:39:16.710] – Jesil:

So basically half a day at school. And it frees up a little bit of her time, but not probably enough to give up.

[00:39:27.170] – Lloyd:

On the brighter side, there are some other supports that we are getting as well, like the respite support, which is amazing. We get to get some time. And then some other support across the different organization. Support from families, very important. Friends, especially for most of the Filipino migrants here don’t have their parents. They didn’t bring their parents with us. Usually, Filipinos bring their parents so that they can.

[00:39:51.760] – Jesil:

Talk to them. To look after them. But in our case, we don’t have parents, no other relatives, just the family and friends.

[00:39:58.480] – Jesil:

All right. And let’s talk about Takiwātanga. It’s a Facebook group. It’s a Facebook page. And tell us about it.

[00:40:10.720] – Lloyd:

So first, Takiwātanga is the Māori or Te Reo word for autism, and it means my, his, her, their own time and space. This is a terminology coined by Keri Opai. He is in Waikato. During the time that my son received the assessment, he’s on the autism spectrum. I am so eager to learn about autism, and I think I read in one of the… I think that’s a book or something. In order for you to learn, like to cement the learning, you have to teach other people and you have to speak about it. So I decided to put a podcast about it, Takiwātangaon the podcast. But at first I don’t know what title or podcast title should I use. I don’t want to use autism. Not that it’s a bad thing, but I want to use something different that… Something positive. Something positive and something that relates to me and my child.

I tried to search for it outside of New Zealand. What’s the French of autism? What’s the Filipino autism? A Filipino term for autism, we don’t have one. And then what other language? And then nothing resonated to me. And then I came across Takiwātanga, it says, for her own time and space. And then I said, oh, this is a good name. I should use this.

But another problem came when I was starting to set up the podcast and said, am I allowed to use this? I’m not Māori. So I stopped from there and then I decided to… Maybe I should just go and find out who created the term. I researched for the person who coined that term and I decided to bring everyone from the family to go to Waikato and talk to the person to give respect to the terminology and to give respect to the person who coined the terminology. So we went to Waikato and I interviewed him about Takiwātanga. This is Episode 2 for that podcast. And we had a conversation and I asked for permission and good thing he allowed me. I set up the podcast after being allowed to use that one.

[00:42:32.010] – Lloyd:

I set up the podcast and then I think I was in episode up until episode 16. Now, another problem came into me, wherein I’m having this imposter syndrome. Imposter syndrome is like for me trying to fake me, myself, being an expert about autism. So something went wrong in my head like, I’m not an expert. Why am I doing this? And things like that.

So I decided to shut it down. All the contents that I have published, I shut it down or shut them down and remove all the contents. And then after a year, every day I see my child growing up and being an eager beaver to learn about autism. So I decided to… Maybe I should just put it back for me to learn. I talked to myself, my inner self, my ego. Yeah, you need to shut up, ego. You need to You need to progress your learning. So I put it back again. And after how many episodes am I now? 28, 29 episodes? After 29 episodes, I’m still here. And it’s so.

[00:43:42.310] – Jesil:

True, Lloyd. I can relate because in having a culture connection, you started strong and passionate and driven. And somewhere along the journey, I felt slowed down. And sometimes you just lost that oomph and energy. And sometimes I just had to take a break. And that’s so normal, I think. And I really admire your journey because it’s authentic and real. You’re being real and honest because I myself can relate exactly how you feel because there are times that I just wanted to give up.

There were times that I just wanted to say, what’s the point of doing this? It’s free, it’s voluntary, you didn’t get anything. And then you spent so much time in doing this. And then sometimes you don’t even know if you impact people. And that’s the challenge. And I think, again, I really love where you said you when you talk to your inner self and just listen to it, and you will know that you are meant to be doing this. And exactly, I just want to thank you because of you, we are able to actually share your story to other parents. And I’m sure this will give inspiration to people that are experiencing.

[00:44:59.690] – Jesil:

So I guess my next question would be, speaking of that, Lloyd, there are a lot of parents out there seeking help and guidance as well. What is your message to them, especially for those who are overwhelmed, doesn’t know what to do at the moment?

[00:45:18.070] – Lloyd:

Yes. Overwhelmed is already something that we are very much familiar with, especially navigating the system. And there’s no right… I mean, not right. There’s no standard path. I mean, if you have flu, you go to GP. Yeah, it’s always like that. You feel something. I’m not saying autism is a disease or something. Don’t get me wrong. If you have flu, you go to GP for assessment so that you can get the medications that you need.

But if someone has autism, I know a parent whose journey is different from us, they were directed to camps. CAMs is child adult mental health services. I think it has something to do with mental health. So they were referred to that by the school. It’s a different path. And my question is, why are we having different path across the country with this? Some other parents are navigating the system on a different way. So in my view, there should be just a path that is standard. And then from there, they can just people or whoever is on that Ministry, they.

[00:46:26.870] – Jesil:

Should just direct.

[00:46:27.470] – Speaker 2

The parents to the right path. Anyway, going back to your question. So my suggestion or my recommendation as a parent is first, especially those who are new parents, if you are seeing something is not common in terms of behavior, you need to seek help as soon as possible. Go to the GP or to the doctor’s experts and they should be able to help the fan or the families. And then when you are with your GP, it’s always like acceptance is the first step. If there’s a problem, you need to accept it. Because if you’re not going to accept it, you’re going to pretend that there’s no problem. You know what I mean? And you can’t fix the problem.

[00:47:19.150] – Lloyd:

That’s what I was after. So acceptance, you need to accept the fact that there’s a problem, you need to accept it. And then you need to find the people who can support you, find your tribe.

[00:47:34.270– Lloyd:

Find other parents who can support you. I call this A team, autistic team. You can call it something else. So do.

[00:47:42.110] – Jesil:

You have that organization in Wellington?

[00:47:44.110] – Lloyd:

I belong to different Facebook groups. There’s a Filipino group who are autistic kids. Brilliant. Yeah. So we are 90 something in that group. And then friends, we have a close friend who is directly connected to an autistic person. The brother is an autistic person, which is amazing because it’s easier to offload when you get overwhelmed, you get problems. Sometimes you get the stress pushing you down.

We just go there in their place and talk to them about it, just to offload. So that’s what we usually do. So just offload. Even just for people to ask people to listen, it doesn’t have to be them fixing the problem. They just have to listen sometimes. Like human beings, you just need to tell, I have a problem, and then that’s it. And then you can move on and start supporting the child. Acceptance, find the people who will fight your corner, be honest or be open about it. I am always open about my child having autism. To whom? To everyone. Hence, I created this podcast as well, and I’m sharing it to my friends, regardless if we’re close friends or not. At the office, I’m open with that.

[00:49:04.670] – Lloyd:

If I’m not open, I wouldn’t find out that my boss is also directly related to someone on the autism spectrum.

so it generates support as well.

[00:49:13.670] – Lloyd:

Yeah, generates support. And also I’m finding my tribe and someone who can relate because that’s important. And then I learned about Suzy as well. Episode 26, I learned about her, about the chat after being open, me being open to myself about autism. So you can find people around who are going to understand you when you’re open about it.

Enjoy the journey. It’s a very, very tricky journey. Challenging journey. I know there are support required. Sometimes it frustrates you. You cannot get the right support. And sometimes you just want to vanished as a parent because you’re overwhelmed with the system, overwhelmed. And then at the end of the day, still cannot get the right support for your child. And now you have the stress.

So just enjoy the journey and be happy with your kids if you have more than one kid or children, and then be happy with your autistic child because they have skills as well. It’s not always a stress. They are very interesting in a good way. They surprise you every day and you learn a lot from them every day. During 2017 and before that, my patience is just like this level.

[00:50:40.130] – Lloyd:

Now it’s like… I’m still a work in progress person, but I feel like I have developed this good patience into myself. So it increases.

[00:50:51.250] – Jesil:

Your capacity to love and understand. Yes.

[00:50:54.000] – Lloyd:

And also I became more conscious about the people around me, not to just judge them because the way they look, the way they behave, and things like that. I’m not saying that I’m already 100 % on that level, but at least I have this conscious thing running in my head that… Hang on. Not the default. Reaction anymore. Yeah, not the. Default reaction. So you’re not reactive.

[00:51:16.130] – Jesil:

You’re trying to be more loving and more understanding. Yeah, enjoy the journey.

[00:51:22.390] – Lloyd:

Learn, read, talk.To people.

[00:51:24.820] – Lloyd:

Who knows about it. Talk to other parents who have strategy in place. I’m not saying that their strategy will work on your child. Like I said, one autistic person is just one, but at least you have another bullet. It’s a bad example. Another thing in your pocket that you can use. It may not work now, but who knows? It might work at some point.

That’s great. At least you have an idea that, Oh, they’ve done this. Maybe I should do this as well. If it didn’t work, then move on to the next. Don’t dwell on that strategy and try to push it. Trying to fit a square into a circle. So just move on. About the community, you can just reach out to Autism Inside. I met the CEO who’s a nice person, and we talked about their support and they can help us as well in navigating the system.

Hutt Valley Riding for the Disabled, I met Bronwyn there, a nice lady who presented or showed me the whole horse track, which is they’re using horses for… Yes, I’ve heard it’s.

[00:52:45.400] – Jesil:

Really good. It calms them down. Is it true? I believe so.

[00:52:49.550] – Lloyd:

Because I read the book, The Horse boy. Row 1 is an autistic person and the horse helped him cope up with his environment and it improved his condition. So it’s a potential. I’m not saying it’s 100 %. Like I said, it could potentially work, but it’s not the only way. It’s not.

[00:53:09.490] – Lloyd:

The only way. And we need to try it first before saying it’s not going to work. We need to make sure that we try it first. But they have the data. They’ve seen some improvements as well on children who are in their program. So I feel like its working. Right. Thank you.

[00:53:26.330] – Jesil:

Who is the person that supports you or people that support you throughout this journey without fail?

[00:53:35.330] – Speaker 2

Friends, especially our closest friend. And then teachers are very supportive during our journey. What can the.

[00:53:46.500] – Jesil:

Government do better in terms of supporting people with autism?

[00:53:52.880] – Lloyd:

If I will be honest, the whole system will need to be revamped, to be honest. But they just need to understand that it’s not just all about the money and funding. People who are applying for support are also human beings. They have feelings and these children have parents. So they’re not just sticking the boxes.

[00:54:13.610] – Jesil:

Right. I hope.

[00:54:14.250] – Lloyd:

When they’re doing assessment, they are looking at it on an objective way. Parents have feelings as well. We get overwhelmed. The autistic child is a human being who really needs support. We just need to give them the support because here we are building this whole world, this environment, not built for them. It’s not built for them and they are trying their best to fit into.

[00:54:43.840] – Lloyd:

World. And yet here we are. We wanted them to thrive. We wanted equity, equitable support, but we’re not looking after the whole spectrum. We’re just looking at a portion of the spectrum on who are we going to give support with. I think at the end of the day, we just need to be a human being. What support do you need and how can we help? Rather than.

[00:55:09.580] – Jesil:

Ticking the boxes or rather than being the ambulance at the bottom of the cliff. Yeah. Going back.

[00:55:15.830] – Lloyd:

To my interview with Minister Poto, I learned about her long term view about having disabled people at the Parliament or in leadership role. That’s a very good goal, right? It’s a vision.

Yeah. I asked her about it, how can we put more people or disabled people in leadership roles if we’re not addressing the very fundamental requirements or need of the child, which is learning good health. So we cannot meet that goal. Apart from.

[00:55:46.370] – Jesil:

Non-governmental support, what initiatives do you think we as community of people can do to help children or people with autism? I think first.

[00:56:00.620] – Lloyd:

And foremost, people just need to accept the fact that everyone thinks differently. And we should stop judging people. I always love this phrase, me muto te wha kawa haere. Let’s stop judging others. Let’s all work together. So it’s a nice phrase that I have incorporated in this podcast as well, because I think all we have to do is just be one human being to another human being. And then we just need to understand other people and people behave certain different ways and things differently. But at the end of the day, we just need to respect them and just accept them. That’s it. And I think that’s the only way that we can thrive in this world.

[00:56:47.560] – Jesil:

So acceptance is really important. And in terms of as a father, what is your dream or aspiration for your son? I always tell my.

[00:56:59.900] – Lloyd:

Friends that I always have high hopes and dreams, like any other parents, right? To thrive in the environment. Excuse me. So to thrive in the environment and then I always tell them that with my son, who is autistic, I can hope for very high goal, which is okay. But for now, I just want him to learn the daily living skills. That’s it. Because if he’s not going to learn all the fundamental factors of human being living in this society, then he’s not going to even take the next step towards a more higher success in life. But for me, he just needs to learn about the going to groceries.

He just needs to learn how to withdraw money from the ATM. Another reason that we want him to be in mainstream school is he needs to learn about having peers, that there are children like him as well. So he needs to learn from his peers as well. It’s always about the fundamental need of a child, which is to learn how to learn about life skills. That’s it. Once he attain that, then I’m going to head towards the next step. So what do you want to do in life?

[00:58:22.770] – Speaker 2

And then after that, we can progress from there. Right.

[00:58:26.580] – Jesil:

Wonderful. What are his milestones?

[00:58:29.740] – Lloyd:

It depends about the milestone. Are we talking about the school milestone?

[00:58:36.570] – Jesil:

Let’s assess the milestones from your life goal, which are life skills. What are the skills he’s learning at the moment? We want him.

[00:58:45.300] – Lloyd:

To learn how to be by himself when he wanted to go and stick out for food. We want him to be independent on that. Right. So at the.

[00:58:55.500] – Jesil:

Moment, he can’t do that yet. It’s still a journey for him. It is.

[00:58:59.370] – Lloyd:

But what we’ve done, because we’re trying to teach him how to be independent in getting food, we opened up the pantry. He can always go there, regardless of the time if he wants to go there. So at least he knows that there’s food.

[00:59:13.620] – Jesil:

It’s open, it’s accessible for him. Accessible.

[00:59:16.310] – Lloyd:

That’s the term I’ve been after. So it’s accessible. And then even the fridge or the refrigerator, you can always open that. One challenge that we’re still super keen to have is he’s still in his nappies. So for a.

[00:59:32.850] – Jesil:

Five.

[00:59:33.460] – Lloyd:

Year old in nappies, that’s unusual. But for an autistic child, sometimes it’s common. Sometimes, right? It is common.

[00:59:43.280] – Jesil:

When I was still teaching, we had a child who was still in nappies. So he’s not toilet trained yet. So you are training him to be toilet trained, obviously. Yes. Like knowing when to go, when to do number two, and when to go number one and all that thing. Yeah.

[01:00:01.980] – Lloyd:

So once he gets to be aware about that and he gets that toilet skills, then that’s a very huge milestone. Wonderful. I will be happy. Awesome.

[01:00:15.690] – Jesil:

All righty. And what do you think your son’s goal? That’s a good.

[01:00:23.570] – Lloyd:

Question, actually. He has a big opportunity ahead of him. He can memorize numbers. And then he can count. Amazing.

[01:00:40.430] – Lloyd:

Hope no one from the Minister of Education will hear this. It’s a problem because the more you show them, the more it will be declined.

[01:00:50.200] – Jesil:

We should celebrate success and strength. Yeah, we should.

[01:00:54.330] – Lloyd:

So he’s amazing with numbers. And I think if only we can leverage on that strength, how can we use that in order for us to communicate about his needs? You’re right.

[01:01:08.430] – Jesil:

We can do that. We don’t.

[01:01:09.680] – Lloyd:

Know the strategy. That’s why we’re seeking help. If we know that, we could probably leverage on that and he could probably learn about living skills. Wonderful.

[01:01:20.620] – Jesil:

Wonderful Lloyd, we are coming to an end. Is there anything you’d like to promote? Is there anything you’d like to say as a final? I think much.

[01:01:28.350] – Lloyd:

I think much of the mind-set thing I already mentioned earlier, acceptance, if you’re a parent, a new parent, or a parent who just learned that your child has autistic traits, acceptance is the key. That’s the first step, nothing else. And then find people who can support you, find people who can fight your corner, find your tribe, and then be honest about your situation.

Enjoy the journey. Enjoy your amazing child. They have super powers. You just don’t know about it yet, but you will learn along the journey. But yeah, they are amazing children and they’re super smart and honest, brutally honest. Learn about autism, learn, read, mindset, mental health, that’s very important. And yeah, and then you can always find me in my podcast, Take a W atang, searchable in Spotify and Apple podcast, Facebook page, Takew atangA s well. I’m selling T shirts like this just to support the infrastructure that I have built as well.

I have an online store, easel.co.nz. It’s just one design for now, but I’m putting more designs and I don’t print this one. I’m just bootstrapping to another printing company. So I’m just earning something. But I’m not complaining, but I’m just saying. And once I get a hold of the funding from my sister, my sister calling.

So yeah, let’s see if I can probably buy my own printing machine. So at least it’s going to be… The cost is not that super high. And then I do websites as well. I can create websites for businesses and content like this or storytelling. I do those stuff as well. And if any amount I get from that, obviously it’s going to go through the infrastructure that I built for autism and other stuff.

[01:03:45.060] – Jesil:

Wonderful, thank you so much, Lloyd. No worries.

[01:03:47.530] – Speaker 2

My pleasure. And thank you for inviting me.

[01:03:49.180] – Jesil:

I appreciate it. Yeah. Namihi Nui, Maraming Salamat and daghang Salamat. That was Lloyd I AM from Takiwātanga sharing his journey about his son with autism.

And we’re going to broadcast this interview live as well at Hat City FM 106.7 on Monday, the 12 of September from 7 PM to 8:30 PM. Thank you. Again, this is Jesil, and again, I’m with Lloyd. Thank you.

 

About Takiwātanga

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I Am Hades X

Takiwātanga Advocate and Proud dad

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