Christel’s story

acd resource learning together 129

“Through this process, I’ve really started to go – you know what? People have jobs to do. People have things they need to get done. And I have my job to do. And that’s to advocate and support my son.”

On this page:

Choosing a school

I started looking for a school for Xavier when he was in his three year old kinder. Before I went, I was really nervous, so I spoke to a couple of my son’s therapists. And they said to me – it’s really important that you find schools that are going to embrace having your child there. Because of Xavier’s cerebral palsy, it was really important that they understand there was going to be a lot of intervention, with regards to therapists.

He was in a mainstream kindergarten. And from the get-go at kindergarten he was just one of the kids [which meant] he wanted to do more, and communicate more with the other children. So that’s what sort of pushed me more in the direction of mainstream. And for his physical development, he always wanted to be up in the walker, on the same level as the other kids.

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An inclusive attitude

I visited a number of schools [with] Xavier in his pushchair, we didn’t have his wheelchair yet. At a couple of schools, unfortunately people looked straight past him and said to me, ‘So where’s the child you’re wanting to enroll?’ That sort of helped me determine the school’s attitude towards having a child with special needs. When people first saw him, they kind of assumed that that wasn’t the right place for him.

The school that we ended up choosing, the principal came straight up to Xavier – completely bypassed me – and introduced himself. And that really made me feel good about, ‘Gee he’s acknowledging my child’. It wasn’t about, ‘So where is this child you’re thinking of enrolling’, it was, ‘Hey, how are you going? I’m the principal of the school’. He even took Xav’s hand.

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Sharing information and reassuring the school

I [gave the school] a lot of reports from his therapists who’d been supporting him through early intervention, and I suppose I really tried to help them to feel at ease, because they’d never had anybody like Xavier in their school, and I think they were very nervous, and a little bit apprehensive.

While they were accepting, they wanted to do everything right for Xavier. I think that’s part of the battle. They wanted to do it right, but they just didn’t know how. So that’s where my role came in, to really try and reassure them. And – I’m there. I’m here to help, with whatever they need, and questions they have to ask.

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A supportive school community

There was a point where I wasn’t sure if I was doing the right thing for Xavier at about … it would have been in third term, the first year, when he was just in prep. I had a parent approach me, and she said, ‘I don’t know what your son has gained from being here, with our kids, but I know my daughter has gained so much, just having him in her class’.

So that was a point where I went – you know what? We’re in the right place for him. And we’ve got a beautiful little community that we’re building around him, to support him.

He can’t communicate like you and I. He relies on a pod book. He relies on a diamond box. So for him to communicate, it’s a patience thing. And it takes a long time for him to get his message across. But even for a child to say, for a student to say to an aide, and pull the aide into line, and say, ‘You’ve forgotten his pod book’ – that’s like, ‘It’s his voice, where are you going?’ So the kids were always very aware, and they’d pick up his pod book and make sure it was wherever he was.

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Sharing my knowledge – and picking my battles

I do believe it is more work choosing a mainstream school over a special development school or a school for children with physical disabilities. But I think that’s something that I was also – from Xavier’s early age – I was always very able to do. I was a single mother at the time, so my life was dedicated to ensuring that he had the best of me. And so I knew the best about his physio. We were involved with the cerebal palsy education centre. And doing that, they helped train the parent to be the physio, the speechie, the OT.

So I learned about my son. And I wasn’t afraid of imparting knowledge on other people – when they were willing to hear it of course. It’s a fine line you walk, because I think sometimes people can feel very intimidated. But it is more work [in mainstream]. It’s definitely more work.

But that’s also a personal choice. And sometimes you go through time when you’re all geared up and you can do it. And there’s times when you go – you know what, I’m just going to let them go with it, and choose my battles, and pick what’s really important for right now, and then we can work on something else a little bit later on.

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Tough times in secondary school

This past year for Xavier has been a really really challenging year. It was about having a new baby brother, it was about starting secondary school. Also training new staff, like with regards to the aides, to understand his communication system.

Xav’s spent most of his primary school years helping people to understand his communication system. And then to get to year 7, where nobody understands it again – he’s trying to teach people, and they kept questioning his ability. And then it kind of got to the point where – you need to just believe that he knows what he’s doing.

I mean, he was suspended from school twice, because he was trying to communicate with his communication system, and they didn’t understand. That was heartbreaking. I found out after the fact, that he shouldn’t have been suspended. That the school has guidelines around children with disabilities – they’re supposed to avoid a suspension at all costs.

I actually called a student support group meeting, and I was told at that point, like, ‘Xavier did this, and Xavier did –‘ and I was like, ‘Whoa, why didn’t I get a phone call? Why are you telling me here, when I’ve called this meeting to discuss this next stage of Xavier’s learning?’

It wasn’t about anything that he could have changed. It was just who he was. And I think people found some of that quite challenging, because they didn’t quite understand the disability. And that’s okay, but I think everybody needs to be open to learn, and to move through that. Whereas [because that wasn’t happening] I think Xavier was really questioning and not trusting the people around him.

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Making the decision to change schools

It gets to a point where everybody is coming from a different perspective. And as much as you try to encourage people to move in the right direction – if they’re not willing to hear you, that’s where you’ve got to go, ‘What’s the purpose I’m doing this for?’ You’ve got to ask yourself that question. Because are you here to fight a battle, or are you here to educate your child? I just want what I believe is the right thing, to be able to give him an education, and allow him to communicate. And that’s the point that I got to, it was like – I don’t want to fight with you any more.

And so next year we’re moving on to a school for children with physical disabilities, who already get the communication stuff. And we are doing some transition around that. But the important thing is, they’re not questioning his ability. And so he doesn’t feel like he has to prove himself to anybody. It’s not about the school environment this time. It’s really about what Xavier needs. And he needs to be a champion. And he is a champion, but he needs to be acknowledged by the people around him.

The school that we’ve chosen will help him with all the physical stuff, but will also help him continue with his education. Which is what’s important. They’ve got things like mentors. They’ve got year 12 students working with the year 7 students. They’ve got school captains. The literacy programs that they’re talking about, and they’re implementing – it’s a modified curriculum, but it’s more challenging, and there’s more things for children to be learning. When I looked at the school when he was going into prep, those things weren’t happening.

It’s challenging that it’s out of zone, but because we’re living in public housing, I’m going to put in an application to see if we can be moved closer. And I’ve actually got another friend who’s lobbying the local member in this area to see if there’s some kind of a bus that we can organize.

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What I’ve learned about asking questions

If I could go back and go through the whole starting at secondary school again, I think I would have done a little bit more work with the school, to really understand what their perspective was for him starting there. Because again, they’d never had anybody like Xavier. But I was also in a position where I had a lot of complications with Logan’s birth. There was a lot of things happening, like my husband had a major shoulder dislocation. There was a lot of stuff going on with our family at that transition time.

I would be asking, ‘How are you going to allocate the funds that you receive from the education department to support my child’. And you’re allowed to ask that question. And if you have an issue with how they’re allocating that fund, you can negotiate that, and you can talk to them about that.

I really would say, with regards to funding allocations, ask the questions prior. Then they can see how involved you’re going to be. And they can actually see what your expectations are. Because if they start to pull back, you can see that maybe they’re not really confident about this. And sometimes you can walk people through that. But that really gives you a good impression about how open they’re going to be.

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A challenge in Grade 6

Xavier was basically in hospital that first couple of weeks of grade 6. He had major surgery. His teacher, she came out to the hospital, to make sure Xav was okay. And at one point Xav was able to Skype into the classroom and see all the kids in his year level.

Xav was really excited about going back to school, but there was a lot of things that needed to change in order for him to go back to school. And it was really important for me, for grade 6 to be a really positive year, because he was having all this time off, but he also had to prepare for secondary school. So I thought … let’s really help him out properly when he gets back to school. Get the therapists out, make sure everyone’s trained properly.

But initially it was really kind of challenging. There was a little bit of resistance from the school, because they were like, ‘Well, what we’ve been doing is fine’, and I was really trying to tell them that – well, no. Its been fine, but going on to secondary school is so challenging, there’s so much more going on for him.

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Some resistance from the school

For Xavier to come back to school after having a good term off, it was really important for me to have the therapy – so his speech pathologist to come into the school, his occupational therapist to come into the school, and work with his aides to set them up so that they could support him effectively, after this big time off school, but also after the major surgery that he’d had.

It was really important for me to get them to understand the importance of that. And they were just going, ‘Oh well, we can only use this amount of money, and we can only have this many sessions per term’, and I said – Well, that’s not enough, and … it was really important for me to be blocked a lot more sequentially, you know, in a really timely fashion, for him to be able to get back on track, if you were. And that just wasn’t happening.

I had a couple of meetings, where I’d go in and speak to the assistant principal. And she’d say, ‘Oh you don’t need to worry about that’ …

I’m the type of person where I don’t think quick on my feet. I’d go home from a discussion with her, and go – I didn’t say what I needed to say. I didn’t make it really clear. Maybe it’s me? Maybe I’m not being clear enough.

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Getting support to stand up for my child’s needs

I had to go on this fact-finding journey, and contact the Association for Children with a Disability and speak to the lovely lady that helped me through. She gave me the websites, she gave me things that I could sit and read, to ensure that we knew what our rights were with regards to education, and what Xavier’s entitled to.

There’s a lot of those things that I didn’t really quite understand. So to be given that information, it’s really empowering. She helped me draft emails and letters.

I’m a pretty easygoing person, and I think I’m a people-pleaser. I don’t really want to rock the boat too much if I can help it. I want to make sure everybody’s happy. But there comes a point where you say – I’m not happy. Xavier’s not happy. Maybe we need to shake things up, to help people to understand that what we’re doing, we could be doing better. And that’s where ACD gave me confidence.

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Support with writing to and meeting with the school

I wrote a few emails. And I would pass them by her, and I would say – does this sound right, or can I change anything? You don’t want to bully people, but you want to inform them. And you want to ensure that they know, that you know what’s you’re talking about. Because it sort of helps them to go, ‘Oh hang on a minute, maybe we do need to look into this a little bit further, maybe we do need to understand this a little bit more’. And so I was able to be a little bit more articulate around that. And then so my confidence grew with that.

She also supported me at a couple of those meetings. Like, she sat next to me, and she said, ‘Cristel, if you need a moment, just excuse yourself for a moment. Get up and walk out, and if you need to recompose yourself do those things. Because it actually gives not just you a moment to reflect, it gives the people in the room a moment to reflect on – what are we really here for. This is a student support group meeting. Let’s support this student to move forward in their education.’

She gave me knowledge. She gave me confidence. And she made me feel as though I wasn’t the crazy one! For want of a better term. Because I really thought – is what I’m asking for unreasonable?

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The turning point: a letter to the department

In the end, it came to the point where I was like – you know what? I need to contact the department, because we’re not moving forward. So I drafted a letter to the education department.

That was hard for me. I think I wrote the letter maybe six times. And I did send it off to Gina to proof-read for me, and ‘What do you think about this?’ and ‘How can I say this better?’ and, you know, “Does this sound alright?’There were a lot of [emails] backwards and forward about how I could say it better.

I didn’t know how it was going to be received. And even when the school heard about it, I wasn’t sure if they were going to be happy. But then, they were fine! Because I think it came from above, that they had to have those negotiations … somebody from the department had been out to the school, and discussed things with the school, and discussed what the expectations are of the school, with the school.

I wasn’t confident [about what would happen] until I actually had that next student support group meeting, and all of a sudden it was like there was different people in the room ­– they just got it! It was like, ‘Yep, what can we do? What would you like us to do? How can we allocate this funding more appropriately to support Xavier?’

I think the school was able to benefit from my experience. They learned from the department. Because I think the department, as much as they have all these resources, I don’t think the schools are always fully aware of what’s available to support them.

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The school kept listening after that

We were able to move forward from that, even to the point where they negotiated with me about] grade 6 camp. I chose to forfeit taking a member of staff on camp to support him. And I said, ‘To me it’s more important that he get his therapy’. So I was able to say, ‘Give him therapy, we’ll support him on camp’.

Things just started happening, with his therapists coming out to school. He was able to complete the work more quickly, because his aides had the skills. They’d been skilled up to the point where they had that much knowledge that they could take a topic, and they knew where to go to get the information. They knew how to scaffold it.

So where kids might be having massive projects, Xav might just be having to research a few things using You Tube and googling pictures. So he had a lot more picture content than the other kids, and he would have a few sentence. But the aides could actually highlight the words that he’d chosen from his communication system. They may have had to fill in the gaps, but they could actually assess that, as the year went on, he was doing more of the writing himself. So he was able to produce work that was his, and I could see it was his. So his confidence just grew.

That particular year, his grade 6 year, was such a beautiful year. And those kids, in that year level – even now that everyone’s gone on to secondary school, they still communicate via Facebook. And even though Xav doesn’t always get a message out there, he can see what his friends are doing. He’s been able to get a lot of confidence.

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Money can only go so far – so it’s about negotiation

It’s about negotiating those things, because obviously money can only go so far. And you can work out, really, what is the most important thing. To me, that was his communication, and having access to the curriculum. And with his occupational therapist and his speech pathologist doing that … and the other thing was the physiotherapist coming in, and modifying things around the school, and assisting aides to support him better, and his rehabilitation from his surgery. But that was a choice we were able to make then, collaboratively with the school.

Up until that point, I think the school wanted to do the right thing, but thought, ‘Well, we have to send somebody on camp’, whereas in fact they didn’t have to. It was something that could be negotiated.

And Xavier ended up having an awesome time on camp. And there was even times when I didn’t have to physically be there all the time, because he was supported by his peers. They knew the importance of his communication system, sometimes even better than the aides, because they’d seen him using it so effectively through the years.

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It’s not easy, but it gets easier – with support when I need it

I do have a lot of respect for authority. That’s just my upbringing. [And] the principal of the school is quite a powerful person, an important person. But through this process, I’ve really started to go – you know what? People have jobs to do. People have things they need to get done. And I, just like them, have my job to do. And that’s to advocate and support my son.

I got to the point where I would say to myself – these people are educators, they need to educate my child. I had to put that whole, “you’re a principal, and I’m just a parent” in my back pocket and not think about that any more. I was a little bit intimidated, [but] you’ve got to put it all into perspective. What are we here to do? That was probably one of my biggest lessons.

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