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Skip to 0 minutes and 2 secondsMAN: FutureLearn [THEME MUSIC] UNSW Australia.

Skip to 0 minutes and 8 secondsStories from childhood.

Skip to 0 minutes and 13 secondsSHOOSHI DREYFUS: My name's Sooshi Dreyfus and I have three boys. My middle one's called Bodhi and he has a severe intellectual disability. He was born with it, but it just happened at the point of conception for some unknown reason, and he has a severe intellectual disability. He's effectively like a toddler, I guess, and he doesn't speak. And so, in talking about his childhood, I'm going to speak on his behalf because he can't speak. But that's really difficult because I can only guess, you know, and make an educated guess about what life was like for him as a result of the fact that he can't speak.

Skip to 0 minutes and 55 secondsBut I'll do my best and, hopefully, give you a sense of what it was like for him growing up having a severe intellectual disability, which in his case resulted, I guess, the main things are in no language and severe epilepsy. But, physically he's fine. You look at him, you wouldn't know he had a disability. He just runs around like any other toddler. So I guess starting back in pregnancy, it was a normal pregnancy. Really beautiful home birth with friends and candles and nothing wrong. Although I did look back at the pregnancy and think that he didn't move a lot compared to the other kids, but I just thought that was because he was a really cool, chilled-out baby.

Skip to 1 minute and 34 secondsAnd when he was born, in the beautiful home birth, he looked normal so we didn't actually know that there was anything wrong with him. And I'm a fairly relaxed mum so, and I already had one child, so I didn't sort of think too much of the fact that he was a bit sick-- you know, quite sick a lot of the time and cried a lot. I just thought I had a bit of a sickly, difficult baby, but he was obviously uncomfortable. He got all kinds of weird illnesses as a newborn like impetigo and measles really early. And he found it hard to go to sleep. He found it hard to breastfeed.

Skip to 2 minutes and 11 secondsHe found everything difficult and he just cried a lot. So it was a pretty intense time for all of us. You know, as a mum, the last thing you want is your baby to be upset and you're always trying to make it better for them and that was really hard. So, things probably started to settle down for him, I guess, when he was able to be upright. So sitting, you know, in the period post-six months. When he could be upright, things started to get a bit better, but he was fascinated by things like his own hands and he used to lie for hours looking at his hands when he was little, when he wasn't crying.

Skip to 2 minutes and 47 secondsAnd we used to think that was cute, but looking back I think he just had a total wonder about the world. He didn't really know much about the world at all and that, in fact, took years and years for him to get a sense of how you're meant to be in the world. So, you know, a baby or a toddler you expect them to do inappropriate things because that's the age they're in. But, as they move beyond that, you expect them to start to be socialised. So, for example, when he started preschool with a teacher's aide at about two and something, he loved water.

Skip to 3 minutes and 23 secondsSo he used to go and stick his hand in the fish tank and swish the fish, and the stones, and the ornaments, and, of course, that wasn't allowed. So, my partner, his dad, Mark, had to build a lid for the fish tank. Or, for instance, he loved flushing toilets. For a kid who has really poor fine motor skills and who can't do very much in life, can't interact with the toys because he just doesn't know how and doesn't have the skills, a toilet is a really good thing. All you have to do is press a button and all this stuff happens. It's really exciting.

Skip to 3 minutes and 52 secondsHe used to clap, and laugh, and bang the lid, and bang the seat and the lid, and then flush again and clap. It was great. He loved it. He could make something happen in ways that he couldn't make something happen in all kinds of other situations. So, we had this big dilemma. Do we let him flush the toilet, you know, or not? And, of course, you ask experts and we got completely opposite opinions on that. So one group of experts said, yeah, why not? It doesn't harm anyone. He's happy. Go for it. And then the other group said, oh, it's unhygienic. It's socially inappropriate. It's not what people should do.

Skip to 4 minutes and 28 secondsSo, we didn't know what to do and we stopped him flushing the toilet. And it was in a summer period. He would have been about, I don't know, three or four, and he lay in the corridor, in the hallway, crying, and crying, and kicking the door. And every half an hour we'd go, all right, he can have one flush. And we would let him flush the toilet and then we'd shut the door and he'd lie down and cry again. And, after a while, we couldn't stand him being so upset. And we couldn't stand the fact that he wasn't able to do what he wanted to do. And we actually didn't care whether he flushed the toilet. Our toilet was clean.

Skip to 4 minutes and 59 secondsWe turned the tap down, so he wasn't wasting too much water, and we left the door open and he flushed the toilet non-stop for two weeks and he had a really happy two weeks. And so, in that sense, I think life for Bodhi was good, provided he could indulge in the weird things that he wanted to do. And given we don't care about what's right, you know, like oh, he shouldn't be doing that. We often let him do stuff like that. And it probably took years for him to wean himself off flushing toilets. And it was the way he would orient himself to a building.

Skip to 5 minutes and 31 secondsAny new house, or any new building he'd go into, he'd have to find the toilet. And, even though he can't read or speak, he can read symbols. So he could see a female toilet sign, or a male toilet sign, and he'd make a beeline for it. Go in and have a few flushes and then we could get on with whatever we came to do, whether it was have an appointment, or visit someone, or whatever. So, yeah, I think for him, provided he could do what he wants. So a lot of it was things like, once he was mobile, going to parks, climbing up and down the stairs, and the slides, for hours on end, like a lot of kids really.

Skip to 6 minutes and 7 secondsAnd then, of course, escalators became the main pastime for the whole way through his childhood. Things, I think, that were difficult for Bodhi was learning new stuff and learning how the world worked. So he didn't understand, and he couldn't follow instructions, and you couldn't explain things to him, so he just had to get used to things by repetition. So, after doing things over and over again, he'd finally get used to, this is what I do now. This is the way the world works now. You know, I go off to preschool now. That kind of thing.

Skip to 6 minutes and 38 secondsWe really needed help with looking after Bodhi when he was a toddler, so we got him a place in a preschool and he had a teacher's aide. And then it came time to go to school and we looked around at a whole pile of schools because we wanted to choose what felt like would be best for him. So there are actually options for parents with kids with disabilities. They can go to a normal school with teacher's aides. They can go into a satellite class in a public school. They can go to a special school. They can go to school dealing with autism and so on.

Skip to 7 minutes and 5 secondsSo we looked around at all the different options, but it became pretty clear that Bodhi would only be happy in a special school because his needs were so different from normal kids' needs. And I think what's really important, it's really hard choosing schools because you so want your kid to be normal, and you so want them to fit in, and lead as normal as possible a life. But what my feeling was, when we looked at the normal schools, was that 99% of the resources are for normal kids for normal things, and your kid would be this 1% where there'd be just this small amount of resources going to them.

Skip to 7 minutes and 38 secondsBut when we looked at the special school, all the resources, every thought, every idea, every facility, was for special needs kids and that felt like a much better environment. So, you know, they had things like heated pools, and spas, and sensory rooms, and the whole school was set up with communication systems. It was so clear to me that, for a kid who doesn't speak, a school that's resourced, especially for kids like that, was the way to go. So, I think, for Bodhi it was quite an adjustment. Because at preschool, they were much freer with him.

Skip to 8 minutes and 9 secondsHe could kind of roam the way preschool kids do, but life is pretty tightly framed in school, even in a special school, and he found that really hard. And he was really hyperactive. He found it hard to keep his bum on the seat for more than five seconds. And a walk to the library from his classroom would take him half an hour because he wanted to flush every toilet along the way. And so learning that a walk to the library is a walk to the library, not a toilet flushing opportunity, was hard for him. It took a long time to learn.

Skip to 8 minutes and 40 secondsYou know, somebody said something to me when he was quite young which is, think about what you want him to be doing in 10 years and start now. That was really useful, but it was really kind of shocking because it sort of drove home how long it takes him to learn things.

Childhood

In this video Shooshi Dreyfus talks about her son Bodhi’s childhood. As Shooshi points out, it is very difficult speaking for someone else, but including Shooshi’s “educated guess” about what Bodhi’s childhood was like for him was important for us to ensure that we were (in some way at least) representing those who cannot speak for themselves.

Listening to Shooshi talk, you can hear three stories emerging.

Firstly, you can hear Bodhi’s story. Shooshi clearly articulates how upset he was as a child due to his poor health. She also talks about things he enjoyed — flushing toilets, playing at parks, riding escalators — all of which offered him control in a world which he often found frustratingly difficult to control.

Secondly, you can hear Shooshi and her partner’s story as parents, their dilemmas in negotiating conflicting advice and supporting Bodhi by working out what would be the best for him. In many ways, it is always difficult for a child’s story to be divorced from a parent’s, and Shooshi manages to clearly articulate that what was difficult for her as Bodhi’s mum was not always what was difficult for Bodhi. As she says, Bodhi had a very happy childhood.

The third story is a socio-cultural one. What was often difficult for Bodhi was societal expectation around what it meant to be “normal”. What is appropriate behaviour, for example. As Shooshi explains, things were a little bit easier for her and her partner because they didn’t mind “indulging in the weird things” that Bodhi wanted to do — things which were often Bodhi’s way of orientating and communicating himself. But Bodhi was often in environments which did not understand or could not accommodate those behaviours. This sometimes resulted in changes to the environment (making a lid for the fishtanks), but it sometimes involved more restrictive approaches to his behaviour.

There is a long history on education for people with disabilities and the difference between Special Education and Inclusive Education (a distinction which can be found in the glossary). It is interesting to hear Shooshi’s justifications around education here and how they make sense within the context of the three streams of Bodhi’s story as described above.

As Eric points out in Step 4.4: The importance of looking across the life course, early intervention for children with a range of cognitive, physical, intellectual and/or learning disabilities can make a significant difference to their opportunities later in life. Perhaps for this reason many of the resources that you can find about children with disabilities are focussed on treatments and therapies, or children with disabilities as inspirational.

Expand your interests — If you are interested in the representation of children with disabilities go to Step 4.11: The child representing disability.

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This video is from the free online course:

Disability and a Good Life: Thinking through Disability

UNSW Sydney

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