Mel and Anthony’s story

acd resource learning together 134

‘Accepting help is something that has taken me a long time, but I’m open to it now. Because the more help I get, the more support I get for my family, the better off we’re going to be as we move forward.’

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Taking time to prepare for a school move

Mel: We [recently] came to a decision to move schools. We sought advice of our therapists about schools that they knew in the area. We had a big meeting to discuss a plan. They were saying, ‘You have to stay another term’. And I’m going, ‘I can’t.’ But I think in hindsight, it was probably the best decision. Because I was then very comfortable when we did move. And we’d prepared the kids quite well.

Anthony: What I’ve learned is the importance of the professionals that we have around us. The key thing has been the ability for the occupational therapist to work with the new school – that relationship between the specialists and the management of the school.

You’re always going to have teachers that get it, and teachers that don’t. We’re all individuals, we’re all human. It’s unrealistic to expect perfect relationships with every teacher. But if you can get that respectful working relationship between our support team and the school management, that’s where we have success.

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Accountability and good process matter

Mel: We had a big student support group meeting without having made a decision at all. The assistant principal said to me, ‘Mel, I don’t want you to be leaving and changing schools, I want to work with you to ensure the success of the children at this school’. And she said, ‘It’s not going to be easy, its going to be hard. We’re going to have ups and downs. You’re going to like me some days and hate me others. But we’re here to work together.’

The principal said, ‘Bottom line, the buck stops with me. Any problems at the school – my responsibility.’ And I didn’t hide anything. I was pretty honest and upfront with them about where we’d come from.

Anthony: A key thing for me was accountability. One of the frustrations for me at the last school, particularly with all the resources that Mel had organized to provide to the school, was a lack of accountability around process. If we’re going to have meetings, we want to have minutes. We need action items. It’s not just the school being accountable. We need to be accountable as well. And we need to know and have articulated as well, what we need to be accountable for.

The occupational therapists and psychologists saying, ‘This is a good school, we’ve worked with this school’ – that was key. But there was a lot of comfort when straight away a computer comes out, there’s minutes being typed, there’s agendas being set, there’s action items being created, and we’ve both been held accountable to those action items, to report back on it. And just having that comfort of knowing there is a process.

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The right support and adjustments

Anthony: Flynn doesn’t fit the mould of a lot of autistic children. His IQ seems high and he seems very high functioning, but his issues around anxiety make it so hard for him to access normal parts of the curriculum.

Some teachers get it better than others. Some teachers intuitively get it. Some have better training, better experience. The principal and the assistant principal get it. So that’s where we’re having I think the successes we’re having now.

Because when we identify – or more importantly, the occupational therapist identifies – that he’s not accessing the curriculum in certain ways, and the teacher’s missing it, the principal and the assistant principal are open. They’re open to the occupational therapist saying, ‘Can we try it this way?’ And so he’s actually accessing the curriculum for the first time in two or three years.

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Finding the right secondary school

Mel: Lana starts secondary school next year. The process of trying to find her a school has probably been going on for about two years. It was a hard decision. I probably did about 6 or 7 school tours.

She doesn’t need any help academically. The reason I chose the school [was that the principal] was the first one who actually understood Lana. She said, ‘I bet I’m going to put you on an accelerated program for English, but I don’t think you’d be very good at maths’. She was recognising the strengths. And she said, ‘I think we’re going to have to help you a bit more, getting yourself organized, and socially’. And she said, ‘And how about we do quite a lot of transition?’

She was obviously well versed in autism. She was offered me all this support. In the end we probably bored Lana to tears, because we’ve gone for all these transition meeting, where Lana goes and just meets an aide, and gets a tour around the school.

It’s a big school, so there’s a lot of extra support and assistance. She has a guaranteed student support group meeting once per term. Guaranteed aide assistance if required, but obviously shared with other people. They will allow her a special health alert card. If she’s getting overwhelmed, she can put up this card, and automatically she can leave and go to the nurses, and they allow her some time out. It’s teaching her to self-regulate. So instead of her exploding … The teachers can also say, ‘Lana, I think you need to use your health alert card’. So, there’s a lot of systems in place.

They’ve also said to me, ‘Mel, let’s not rule out languages. Let’s expose her to it, and see how she goes.’. They’ve been very supportive. I went and had a meeting with Lana’s occupational therapist at the school. And the school sent her an email after, telling her that they valued her advice and support. Saying that they might be experts in teaching, but they certainly weren’t experts in Lana or autism, and they were looking forward to working with her.

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A supportive team of advocates

Anthony: I think a key thing is having that team around us that is accepted in the school – so certainly, finding a school that has a working relationship with the occupational therapist was key – because when Mel or I vent to the occupational therapist, they can then translate that into professional-speak, which can then be, ah, appropriately …the point made to the principal or the teacher.

Mel: She’s put a strategy in for me as the parent – she is my venting tool. So I can send her emails. I often say at the top of the email, ‘You don’t have to read this email, this is my vent’. And sometimes she’ll reply and sometimes she won’t. But she bears it all in mind when she goes into the school. It’s about someone looking after the needs of me, that’s independent from the school. So I almost use her as a filter.

Anthony: Everyone hates being labeled the annoying parents, or the troublesome parents. The key for me has been getting a team around you, another voice to be able to go into the school, and cut through a lot of that emotion. That’s probably what has saved us, in terms of having that unemotional, unattached advocate.

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A new approach in the new school

Mel: We’re an expert in our child, as a parent. But we’re not an expert in autism. Because with two children on the spectrum ­– [I know that] what works for Flynn does not work for Lana. So as a teaching staff, that’s quite confronting too. Because just when you think, ‘Yeah I’m an expert on autism, because I was able to deal with that child really effectively’, you get another autistic child coming in, and its totally different.

That’s something I’ve changed quite significantly with the new school, where I’ve walked in and I’ve said, ‘I’m here to work with you, I don’t have the answers, I’m learning every single day how to work and live with this child, and get the best for him. But I’m still learning, and I’m open to ideas and suggestions’. So I think that’s something, that I’m coming with a new philosophy to the school.

I’m starting to be more flexible. I’ve been so busy trying to protect Flynn that perhaps I’ve prevented some of his learning. Unintentionally – my intentions are good. But sometimes I need to see how he’s going to go. Sometimes he totally surprises me. So that’s been a real learning journey – [learning] that I don’t know what’s he’s capable of.

Anthony: And encouraging the school to push as well. It’s easy for us to go in and say, ‘Look, he had trouble doing this’, or ‘He has trouble doing that’. We need to let the apron strings go to a degree, to allow them to push him in a safe environment. And that’s the importance of getting all those other structures, around the accountabilities, and the expectations of the school of us, and us of them.

They’ve got four kids on the spectrum in the classroom, and every one is different. The key I’ve found is that as long as the management have that flexibility and scope to change, and have reasonable adjustments in every circumstance, that seems to be what’s working for us at the moment.

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Working with the art, sport and other specialist teachers

Mel: Our biggest challenge is specialists – you educate the main teacher, and forget about the specialists. And then they go to these specialist classes, which are out of their routine – different face, different voice, different rules, different change of classrooms. It can be really problematic.

That’s something that I’m learning more about, through the new school. They’ve been more supportive of the specialists having meetings. And the occupational therapist has gone around to every specialist and spoken to them, set up a safe spot in most of the rooms. Given some quiet rules. I think the next thing is they’ll have to make those rules visual. But that’s another journey.

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Focussing on the positive, staying involved

Mel: It’s very easy to become overwhelmed with the negative, but I also am trying to focus on some of the positives. Like, I’ve got him to school nearly every day he’s been at the new school. Even though they haven’t been full days.

I’m celebrating that fact, rather than looking at, ‘Oh, well he’s still not at school full time.’ He’s at school, that’s better than what he has been. So I’m trying every day to look at the positives, rather than focusing on all the things that aren’t being done, and all the things he still needs and will continue to need. And that’s helped our family [and] our relationship with the new school.

Anthony: We went in, very early with this new school and said, ‘We’re here to assist, we’re here to work with you’. We’re here to provide a resource for you as well. So within a matter of weeks, I took some leave and went on school camp. We make ourselves at every opportunity to do those types of things. Not to say, ‘We’ll do all this, so you’ve got to do this back for us’, but you know, we make it clear to them that, you know –

Mel: They’re not alone.

Anthony: They’re not alone. It’s about that partnership.

Mel: There’s also the human touch. So instead of always being in talking to them about problems, you just see them – ‘Good morning, how are you? How was your weekend?’ or if you know something about them, that they’ve had something on, ‘Oh, how was that event you went to?’ So having a totally different conversation with them, and treating them as a human, with needs and emotions. That’s been quite significant, hasn’t it?

Anthony: It has. But you do that naturally. You’ve got to live with people, and work with people. But, I mean, you do that well. Because that’s you as a person. And that’s why, to a degree, we’ve had a lot of success with building certain relationships.

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Making connections with other families

Mel: We went on a family camp this year. And it was a revelation to us. We started making some friends who were in similar positions to us. And it’s made a huge difference. We don’t feel so alone.

It can be a very lonely journey. But now we’re exposing ourselves a little bit more out there, and becoming a little bit more vulnerable. It’s becoming a little bit more rewarding. We’re getting a lot more joy, aren’t we? And the kids are getting a lot more joy too. Maybe they’re getting a bit older too.

Anthony: Shared experiences are important. And it’s actually quite humbling, in regards to some of the other people’s journeys that you become involved in. So from that perspective, it’s been very positive. And to have those shared experiences.

Mel: Because they get it. You don’t even have to talk. They just get it.

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There’s always an option – even to do nothing

Mel: A piece of advice someone gave me when I felt I was up against the wall, there was no help, everything was overwhelming, is – ‘It doesn’t matter what happens, there is always an option’. Even if your option is to choose to do nothing, you still have an option. That has really resonated with me, and it’s always changed my perspective.

Each day I go into school, and some days I think, ‘Oh my god, oh my god, what are they going to tell me today?’ But I always have an option. I even have an option of saying, ‘Do you know what? I can’t listen to this today. Email me, make an appointment with me.’ I kind of have taken back some control.

Accepting help is something that has taken me a long time, but I’m open to it now. Because the more help I get, the more support I get for my family, and our children – the better off we’re going to be as we move forward.

So yeah, you’re never out of options. There’s always an option.

Anthony: And we do it together. And that’s worked well. Don’t get me wrong. I’m very supportive of all of the things we do, and I feel we’re in a very good space at the moment. But I haven’t always been this perfect! Mel has dragged me along kicking and screaming a lot of this journey.

But what continues to amaze me is the amount of support and assistance that’s out there. We’re very lucky, that Mel is able to identify a lot of this stuff, and access a lot of this stuff. And there’s a lot of knock backs, and there’s a lot of doors slammed in your face. But if you have the capacity and the capability to fight, you can get there.

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