Limor’s story

acd resource learning together 130

‘If I wasn’t honest, it could have been a really horrible year, and I wouldn’t have formed the connection with the teacher. I wouldn’t have had the trust in her, to get through the year in a positive way.’

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Deciding between mainstream and specialist school

Noam used to go to a special school for early education, and then we decided to try and put him in a mainstream school, and see how he’d go. He’s such a people person, and he’s so outgoing and so inspired by life. He’s full of beans and I think that’s really worked in his favour.

Choosing a school was a hard decision. We were advised by a lot of people to put him in a special school, to the point where we actually enrolled him in special school at one stage. For quite a lot of reasons, that would have been fantastic. Small class sizes – you know, six children generally to two teachers, that individual sort of care. He would have been able to catch a bus to school and back.

It’s such an individual family decision. Watching Noam with his peers, and how much he learns from his peers and from his siblings, and from friends’ kids – his abilities are way beyond what I could ever have imagined. So it was so important for me to [try mainstream]. And if it wasn’t going to work then that’s fine, we’ll reassess and move on.


Being upfront about my son’s needs

We started to look at schools around the area, and I asked a lot of people about different schools. I realized very soon that it comes down to such a personal decision. A fantastic school for one kid, might be terrible [for Noam] and wouldn’t suit him.

About a year before he started, I did the rounds of the schools. And I made a very big, tough decision. I went – okay, I have to be really honest. I wanted to tell them as it is, and their reaction basically would tell me whether or not I was going to be supported, and more importantly, Noam was going to be supported in a school.

Noam’s a bit of an absconder. That was a very very very tough thing for us, because we were scared to put him in a school that didn’t have fencing. He doesn’t qualify for a full time aide, he has level 4 funding. So who’s going to watch him? Is he going to be there when I pick him up? And behavioural issues – what are their strategies? Will they develop an individual learning program for Noam? Because he’s not going to be at the level of his age group. But in saying that, he needs to follow a very similar curriculum.


My strategy with talking to schools

I didn’t tell schools on the phone that I have a child with special needs. I said, ‘I’d like to make an appointment to come and see the school’. I didn’t do group tours. I went on my own.

When I sat down with whoever was giving me the tour – generally the principal or vice principal – I said to them, ‘Well my child happens to have Down Syndrome’. Reactions are priceless! I very quickly got an idea as to which school would accommodate his needs, the way that I wanted his needs to be accommodated. And very quickly understood which schools are just not interested.

[With the school I chose] I had an appointment with the principal. I think she [wondered], ‘Why are we having an appointment?’ – like, ‘Why don’t you just come and look at the school?’ And I said, ‘Well, Noam has Down Syndrome’, and she’s like, ‘Yeah – and?’ You could see on her face, it wasn’t even an issue.

And she said, ‘So what are you concerned about?’ And I said, ‘Well, here’s my list. You know, we have behavioural issues, we have absconding’ – which was huge. And the school does not have fencing all around. I didn’t even want to look at it for that very reason.

[The principal] said, ‘Well, that’s fine. We’ll just have an aide on him all the time’, and I went, ‘But he doesn’t have the funding with him, to have an aide on him all the time’. And she said, ‘Limor, it’s my duty of care, to make sure that your child is safe in the school. If he needs to be watched outside, he will never be alone outside’. This is his second year at the school, and the only person who’s lost him is me!


Looking for evidence of inclusion

[It’s important to] go into the school, to see what the environment is like, and get an idea about the school community.

I would always look out for other kids with special needs. I went to a few schools that, you know, you could see children with all sorts of different needs running through the school, left on their own devices, [or] at the back of the room with an aide, separate to the rest of the class.

The principal of our school has said to me, ‘You know, I go into that classroom, and I don’t see Noam. One day when I went in there, and I said, “Where’s Noam? Is he away today?” and his teacher was like, “What do you mean? He’s reading.”’ And he was with a group of kids. And that, to me, is inclusion.

At Noam’s school there are two other children with Down Syndrome. As with any other child, they’re all really different – needs and abilities and personalities. But I think for Noam, there’s a special connection, to have other children there with him that have some similar needs. And Down Syndrome is not something that’s new in the school. It’s just a part of who these kids are, and they’re there together, and they’re a part of everybody.


Support from other parents

For me as a parent as well, having other parents in the school that have children with Down Syndrome, or any special needs at all, is an amazing support. In the early years, you do find a lot of support groups, and early intervention and all that kind of thing. When you go into a mainstream school, you feel quite alone. So having that sort of support in our school is just unbelievable.

There are times when I find myself standing out the front of the school with the two other mums of the kids that have Down Syndrome. You need it sometimes – because it’s tough sometimes, you know. You’ve had a meeting with the school, and you’re really upset, and you can’t just go talk – you can talk to any parent that you’re friends with, or friends that you’re friends with. But nobody really gets it like we do.

So having that support is I think really valuable. Even if it’s once every six months that I say something to them, at least I know that they’re there. And you’re walking into the school feeling supported.


Building a relationship with school

Building up a relationship with Noam’s school has been the most important thing. And appreciating the work that they do, and telling them that they do a really good job. I don’t think teachers hear it enough. And I think that’s a really huge part of building a relationship with teachers and support staff.

Often I’ve said to them at the end of an SSG meeting, a student support group meeting, you know, ‘Thank you so much for everything that you’re doing’. I remember the time I said it to one of his teachers, she just looked at me, like, ‘Oh, thank you so much’. They don’t hear it. They don’t get it. And I think we need to. Its part of building the whole relationship.

Every term we have an SSG meeting with Noam’s teacher, with the principal, with another person. Generally one of the aides will take minutes, but also sort of be involved. The meetings can get really emotional, because it’s when you kind of lay it all out on the table. One thing I learned, right from early on, is to never go by myself. That’s purely just for my support – to always have my husband, or even a friend, or an outside therapist or somebody come with me for these meetings.

It’s not easy. There’s days when I wish I didn’t have to worry about which aide was with him. I wish I didn’t have to watch a school concert that he doesn’t want to participate in. That’s difficult for him. But as soon as I acknowledge and accept that, and the school does, and we work with that, then, well, it’s not an issue. It’s just Noam – it’s fine.

If he gets to a point where he doesn’t cope with a certain thing that’s happening at school, well let’s figure it out. And if we can’t figure out why and help him, and you know, move it along, well let’s just look at a different option within the school. And that, for us, has really worked.


Tell the school what you want

I’ve always been very upfront with the school, and encouraged them to be honest with me. If he’s having a bad day, I want to know about it. I need to know about it, because if I don’t know about it, we can’t work together to fix it. It took a little bit of time for them to understand that.

Don’t think that they’re just going to tell you, cos they’re not! You need to really let them know that, you know, you want to know what’s going on. You want an email once a week from the teacher, or for them to write in the communications book.

A communication book has worked really really well for us. Just, you know, little things, like, ‘Noam had so much fun eating icypoles with the rest of the class’. I find that if I tell them what I want, I get what I want! Because otherwise they don’t know. It’s not cos they don’t want to. They don’t know. For them it’s also new. Every child, every family is different. Every family’s needs are different, so unless you tell them what you expect from them, they’re not going to know.


It takes time to build trust

Building relationships with aides and support staff and teachers and principal – it’s more important than anybody realizes. Because it comes a time when you have to go to work, and leave your child screaming. You have to know that they’re safe, and that they’re okay. And to know that if they’re not okay, you’re going to hear about it.

For me, the first year of Noam’s school was very hard He had a lot of anxiety at school. But as time went on he got happier. What helped me gain a lot of trust in the school was that when he would not settle, they called me.

Admittedly if it was every day for a whole year, you’d think – ‘Oh, hang on a minute, what’s going on here?’ But recently he had an operation, and had a bit of a tough recovery. And had to go back to school. And we had to go back to work. But there was a day where he was just not coping. And his teacher called me, and you know, she’s like, ‘Oh, I don’t know whether you should come and get him or not, but I just wanted to give you the heads up’. And [I thought] – well if she’s calling me, there’s something really wrong. Because she wouldn’t usually be worried, she can usually deal with whatever the issues are.

It’s hard to put your finger on how you learn to trust a school. I think it’s hard for any child, but I think a child with special needs – they’re his voice, they’re his everything. It took me a long time to let go of him, and let me out into the big wide world where he’s vulnerable. But I’d built relationships with a lot of the staff in the school to know that he’s safe. And I know that they care, and I know that they’re honest with me.

It took time. It doesn’t happen overnight, and you can’t be hard on yourself for taking the time. But you get there. I still have my moments!


Balancing expert help with letting the teachers teach

I used to take Noam out of school for OT. I used to pick him up early, and it would ruin his whole day. Until one day his teacher said to me, ‘Limor, stop it. I’m here to teach him. You don’t need to take him out for therapy. I’m here to teach him how to write. I’m here to teach him how to do what he needs to do. Give me a go. Just let me teach him, and if it doesn’t work, we’ll talk about bringing someone in, an OT or whatever.’

Because he’s got a teacher, and you know, she’s trained as a general teacher, but she’s obviously put a lot of effort – she’s got a lot of kids with different needs in her class, and she has for many many years. And she goes to workshops and this and that. And she just – she’s got the skills to teach different abilities.

We have invested in Noam’s psychologist doing a school visit, and giving strategies. We needed it once this year, and that’s it. For the teacher to know that she’s got that sort of support from me, and from someone external, I think it makes all the difference as well.

Noam’s speech therapist comes into school once a week. She does individual sessions one-on-one with him, and one of his aides will sit in some of the time as well. And she does group sessions with him and other kids in the playground – social stuff. That’s worked really really well. She’ll give tips to the teacher about what they’re working on.

With Noam’s behavioural issues – I needed support with it at home. And I realized, most likely they [also] needed support with it at school. For me, it was a bit like a no-brainer. We have this amazing child psychologist that we’ve started working with at home, why wouldn’t I get them into school to help? She built a relationship with Noam and with me, and I only saw that as a benefit to the school to get the support. And when I offered it, they were like – fabulous!


Raising a problem at school

I had an issue with Noam’s aide and his teacher, with the way that they spoke about him. It wasn’t malicious at all. But it was things like, ‘He wouldn’t be able to do this’. The other children would do it, but ‘he wouldn’t be able to do it’. Just little words that made it sound like the expectations weren’t there for him. The wording that was used was very old-school, and focused on his disability, rather than his abilities.

I’d come home very upset from school, and really angry. I was really unsure about how the year was going to go.

And then we had our student support group meeting. I went in by myself, which is something I will never ever do gain for as long as I live! In his individual plan, in his goals and stuff, it said that he was ‘not able’ to do something.

That just tipped me over the edge. I said, ‘He might not be able to do it at the moment, but he will be able to do it, if we ’put the right support in place’ … I lay it on the table, and said to both of them, ‘I don’t like the way you talk, I don’t like the language that you use’.

The aide was devastated that I felt that way, and the teacher was even more devastated. Within a minute, it changed everything. And interestingly enough, his teacher has never ever ever been like that since, and on the contrary has made an amazing effort to not talk like that. And that’s something that I’ve taught them, I think, is that political correctness is really important when talking with families of children with special needs.


Everything got better because I spoke up

For me, that SSG meeting worked. It was really tough, and there was a bit of heated discussion. But it was a really important step into being really open. And it taught me that I needed to be honest, because they didn’t realize what they were saying.

And that teacher has been the best teacher Noam’s ever had. And she believes in him – sometimes I think more than I do.

So it was a big learning curve for me. If I wasn’t honest, I could have spent the entire year crying over that issue. And it could have been a really horrible year, and I wouldn’t have formed the connection with the teacher. I wouldn’t have had the trust in her, to get through the year in a positive way.

Because of the person that I am, I don’t let things lie. And I went all gung-ho – which I probably shouldn’t have, which is a learning curve for me as well, because there’s ways to, you know, express your emotions! But the honesty helped all of us. She was so grateful that I was honest. And I realized that she doesn’t use her filter! So she didn’t mean anything by what she was sort of saying.

It really helped us to form an amazing relationship, and she is the most amazing teacher I have ever met. She’s inspirational, I think. She inspires me. I wish he was having her again next year!