Marie’s story

acd resource learning together 133

‘You can also see whether it’s going to work from the goals they set for your child. If all they’re interested in is, ‘Oh, his bad behaviour, we’ve got to get that right’. If they’re not challenging your child, it’s not going to work.’

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Choosing our first school

When I started looking at schools for Ethan, the reactions were quite mixed. Some schools were quite welcoming. At others, you would get, ‘Well you know, he needs to be in a special school, [but] you can bring him here if you want’. We felt that we could put our foot down and say, ‘Well, you’re our local school.’ But we felt that if they weren’t welcoming to him, then he wasn’t going to get a good experience.

Our other concern was that, if there was an open door or an open gate – Ethan was out and off. I was quite fearful of that. So when I found a school that seemed quite positive to have him there, and they had a big gate they locked during the day, I thought, ‘Yep, we’ll go with that school’.


Low expectations, then a better school

The support was good, but there’d be times when he’d run out of the class, and they’d just play with him for the rest of the day outside. I’d say, ‘If you do that once, he’s going to want to do that all of the time. You need to treat him like you would the other kids. You wouldn’t accept that from them.’

By the end of the year, you could see that even if Ethan moved into a different classroom, he would still go back to those practices. So we ended up having to move schools for his benefit. That worked out quite well, because his younger brother started the next year. We started them at a much smaller school. It was open, but they had a few children enrolled there with disabilities. They were very supportive.

It was a multi-aged classroom, which worked out really well, because it meant that he was in that room for two years. He was quite at home, and started making friends. And his friends weren’t just in his grade, or his age group. Some grade fives and sixes would play with him, because he was good at tennis. That was the sort of school it was – so community-based, it was amazing. So he had a wonderful experience for those years.


More low expectations in the middle years

When he got to grade 3 and 4, it was just that one class of 51 children, with two teachers. So Ethan missed out on consistent discipline. Problems kept occurring, and in the end I felt that wherever there was trouble, it was easy to blame Ethan. I feel for the teachers. It’s a big job teaching a grade full of kids. But I felt that often they wouldn’t take the time to find out what the issue was.

You can also see whether it’s going to work from the goals they set for your child. If all they’re interested in is, ‘Oh, his bad behaviour, we’ve got to get that right’. If they’re not challenging your child, it’s not going to work. So that was the first warning sign. The teachers were concentrating on behaviour, and not setting any educational goals for him. When it came to projects, they’d give him the sheet, but didn’t expect him to do it. I’d work with him at home, and he’d do his presentation like the other kids. I wanted to see him included – he might not do the same work, but he still has to learn to do work, and present it. To show the other kids what he’s learned as well.

In the end, Ethan’s behaviour got so bad, he was spending most of the day in front of the computer. When they would try and get him to do work, he’d be like, ‘I got to spend all day yesterday on the computer, why can’t I do it today?’ When the teachers leave it all up to you – discipline, dealing with the issues, or finding out what’s wrong – that’s a big message. They might be stressed out, but they’re not putting the effort in. And that’s what I’ve got to look at.

I did think about putting him into another mainstream school, but I felt he would bring those issues with him. So I felt, ‘Well, maybe he needs to go to a special school’. Because of the assessment process, he had to go to an SDS (special development) school [for students with an IQ score below 50].


Our experience at an SDS school

The great thing about the SDS was the small classrooms – the teachers were consistent, and his behaviour improved within two terms. But I asked them to please give him some challenging work, because he’s literally going backwards. It was breaking my heart each day, because he started phonetically spelling words that he knew how to spell. He refused to write unless it was tracing. He started signing – he’s a good talker, is Ethan, we’ve never done signing with him. We’ve never had to, because he’s always talked.

I was starting to see this change, and I thought, ‘He’s just going backwards and losing what he’s worked so hard to do,’ so after another term of this, I made another decision to move him back into mainstream school.


A much better experience in mainstream

I spoke to the principal – explained all the issues that we’d had, the type of behaviour he would present with. I was frank with her – ‘I’m trying to do the best that I can with him, I don’t feel that he should be at the special school, I need to pull him out. I need to put him back in mainstream school, because I do believe he has the ability to learn.’

She was quite frank with me, she said, ‘We’ve had other children where it’s worked, and there’s been the occasion where it hasn’t worked. But we will do everything in our power.’ I appreciated that … because mainstream doesn’t work for every child. I didn’t have a problem with that. That’s why I was willing to put Ethan in special school, but where he was, it just wasn’t working. And when she was positive and candid with me, I thought, ‘Okay’.

I was forced to move the other two children as well, but because it was a much bigger school with a lot more opportunity, it worked out really well. And Ethan was improving. He was learning again, and they were very supportive.

Moving him back into mainstream [was] a really hard thing, because there’s a big adjustment not only for your child, but also for the teachers. They had to understand his behaviour, and how to help him. And how he would ask for help, because he didn’t always ask in a conventional way. At first I would get phone calls – ‘Can you come and get Ethan?’, or ‘Can you come and help us?’ I knew that it would be extra work, because there isn’t just the new routine, and the new issues with the school. There’s new teachers, a new environment, and having to stand up for him.

It ended up that he learned the routine there, and they learned to understand him, which was great. And they were able to get a good aide. He was progressing, educationally, and that was really what we were looking at. Even though it wasn’t the perfect solution, it was the best solution at that time that we could find.


A chaotic start to secondary school

I was loathe to put him back into the SDS where he’d gone backwards. So when our local high school seemed quite supportive – I thought, ‘Well this will be great’. I didn’t find out until the last day of grade 6 that they been speaking to the special schools in our area, trying to get him enrolled! It really shocked me. I got this phone call, ‘Oh, they’ve just opened this new middle school, be perfect for Ethan …’. I said, ‘That school won’t take him’, because I had already been there. ‘Oh no, you mustn’t think like that,’ says the welfare coordinator. ‘I’ll make a time, it will be the week before school starts, they’ll see you then, and he can start there.’ I said, ‘Okay, we’ll do it your way.’

All holidays we had no idea what school he was going to. The week before school, I couldn’t get onto the special school. I rang the high school the day before and asked, ‘What uniform do I buy? Because its three o’clock in the afternoon, and he’s got to start school tomorrow’. ‘Oh, bring him here. We’ll go from there’. So we went out and bought him a school uniform to wear the next day.

I asked, ‘You’re going to do an obviously modified curriculum for Ethan, what books do you want me to get?’. ‘Ah yes, we’ll get back to you about that’. About the third week of term, we had parent-teacher interviews. One teacher sits opposite me – all serious as you like, and says, ‘You are aware your child’s behind the other students in the grade, aren’t you?’ And it was like, ‘Okay, now I know what I’m dealing with here!’

And I said, ‘Yes, I believe that’s why you have a, um, individualised learning plan. And I’m still waiting to hear what books you would like me to buy for him.’ ‘Oh really?’ So I then started to get the picture of the high school.

One day I got this phone call at work. ‘Oh, you’re going to have to come and get your son, he’s thrown himself on the maths room floor, we’ve got another class, we had to cancel one, we want to start the next one, we can’t cancel every class, you’ve got to come and get him! Oh … unless … unless you know what to do.’

I’d never met this person, and as it turned out he was like about the fifth up the ladder – there was like the aide, the teacher, the whatever, the whatever. And all five were, standing round him saying, ‘Come on Ethan!’. I said to the guy, ‘Just give him a note and ask him to deliver it to someone in the office’. ‘Oh, do you think that’s going to work?’ I said, ‘Well you can only try and see what happens’. Ten minutes later – ‘Oh it worked!’

It’s a whole different ballgame, secondary school. These teachers obviously had never dealt with someone with Down Syndrome, and basically Ethan was saying, ‘This is hard, I need help here, and no one’s helping me.’ And that’s why he threw himself on the floor.


A special school that works for Ethan

I had to go further afield, and I found a school that was willing to take him on his own merits. The principal was wonderful. She said, ‘The [IQ] grading is important, however what’s more important is whether the child can do the work, and whether they fit in socially.’ So it meant that I could get him into a higher level of school than his assessment said that he should be at.

He’s doing really well. They assessed him as being adult literate. He’s learning, and they’ve had issues. But they already understand him. When he throws himself on the floor because he doesn’t want to leave that classroom, they just step over him and move out. And he just realises, ‘Oh gee, that didn’t achieve anything’, so up he gets and follows the rest of the grade. The first week, his teacher said, ‘Oh, we had this issue with him in class today’. And so I said, ‘Oh okay, I’ll talk to him about it on the way home’, and she said, ‘Oh no,’ she said, ‘I’m only letting you know, so that you know what’s going on’. She said, ‘No, what happens at school, we deal with it at school’.

Oh, I just felt like crying! And giving this teacher a hug! It was like, ‘Oh finally!’ (laughs). It was great. They knew how to deal with it, because the whole school was kids with special needs. It was great to get that support, and know he’s going to get an education. They’re children with a moderate intellectual disability, so a lot of their teaching is based on life skills. Ethan’s learning things like how to catch a bus with a myki card, you know, how to behave in the shopping centre. As well as his literature. A lot of their maths is based on dealing with money. He’s being challenged.

One of the wonderful things is that he actually has peers at his level. So he’s got friends, he’s the hero of the basketball team, because he’s a good basketball player. It’s just so wonderful to see that, when he jumps out of the car, he runs into the yard, and bails up one of his friends.

So I feel a lot better. Because we’re out of zone, he can’t catch the school bus. So I have to physically drive him 40 kilometres each way. So we’re relocating. But he’s learning things like, he needs to be responsible if he wants to get a job. And they’re so consistent, it’s great. When he gets up to mischief I think, ‘Please don’t expel him, please don’t expel him!’ (laughs) Because there’s so much benefit there for him, it’s going really really well.