Inclusion – So Hard But So Worth It

So far Michael has not been in a mainstream classroom. Or any kind of classroom. The only experiences with inclusion we have had have been at the playground, and of course in family settings. And I can say this: inclusion can be really sweet, and can work very well. It can look wonderful. It’s when his cousin decides to chase Michael up and down the house, catch him, kiss him, and let him go again. While Michael giggles. Or when another one pushes him on the swing. Or they jointly try to figure out why he is crying and what he is trying to ask for.

But it can also look very different. It can be when we are at the playground and get funny looks over meltdowns or unusual behaviour. Or when Michael takes five minutes to figure out how to go up stairs and down a slide, and the other kids run around him, push in, and go down much faster. Most of the time they will just ignore him, as he cannot join in their games. And that’s while he’s little and cute. Other parents of more severely disabled kids have told me they hate inclusion. They would love ‘safe’ spaces where their adult children can play at the pool. Often they display behaviours like pulling their pants down in public that are no longer cute and much more shocking at an older age. And ironically because they stay at home, and no one sees this behaviour in public, it is more likely that if someone does see it they would be shocked. So in some ways our (often) self imposed segregation and isolation is self perpetuating. But as a special needs parent there are only so many battles you can fight in one day. Most of the time, we don’t want to fight at all. We really want a coffee.

Inclusion takes work. It takes work both by us as his parents. We have to make sure that the other kids don’t push in, that they wait for their turn. I spend a lot of time in playgrounds raising other people’s kids while those other people sit at their picnic tables and eat cake. My husband and I have to explain to these other children how they can play with him, and that he does want to play with them even if he doesn’t know how to show it. And most importantly we have to get out of the way and let it happen, when the opportunity arises. While keeping everyone safe. Instead of following our instincts, jumping in, taking over, and doing all the work for Michael. But still keeping him alive. A very difficult juggling act. We have to constantly fade our presence. But at least we have control over our own actions.

Inclusion also takes a lot of work by other adults, and that we have less control over. Other parents telling their children about disability and encouraging them to play with those that are different. Instead of sitting around ignoring their children and everyone else’s while they gossip. And teachers saying ‘yes, I know how to adapt the curriculum to this child and yes, he is teachable’.

Of course, it is mandated by law that Michael should have a spot at the nearest public school and should be fully included, with an allocated aide. This mandate is backed up by 40 years of research. All the research supports over and over again that students with disabilities get better outcomes when fully included in a mainstream classroom. These outcomes are better both academically and socially. Academic outcomes are better both for students with mild disabilities (about 13% better) and students with more severe disabilities (a smaller, 6% effect, but still significant). Social outcomes are significant for all children. They are better for students without disabilities in the class as well, and have never shown any negative effects for them.

But studies also show that these outcomes will depend on the attitudes of the teachers, and you cannot mandate that. Only about 50% of teachers believe in full inclusion for children with more severe intellectual disabilities. Many administrators are also against it. No amount of legislation can change people’s attitudes. Only education and positive experiences can do that. Which is why every child’s situation will be different, and every parent’s decisions will vary.

(PS if you want to read a great review of pretty much all studies ever done in inclusion vs segregation in children with an intellectual impairment, have a look at this article by Dr Robert Jackson : http://www.include.com.au/…/uploa…/2011/11/Inclusion_Seg.pdf)

I have noticed over and over how much bias against inclusion most teachers and many other parents have. This is especially the case with more severe disabilities, to the greatest extent around intellectual disabilities. If the disability is physical, something requiring a wheelchair or a hearing aide, teachers and parents are fine with inclusion. They can make the adjustments necessary. But when we mention that our child has a moderate intellectual disability, ‘no he doesn’t have aspergers, yes he probably maybe has an iQ under 70, maybe 50, but he’s 3.5 so we have no real idea’ attitudes change. The response is ‘we will see where he is at when he is school age’. Of course with the implication that if he is still under 70, he is beyond teaching. Which is demonstrably untrue. He is only unteachable by a bad teacher. Like many other children. Please note this is not because people don’t like us or don’t like Michael. As a whole everyone loves Michael and wants what is best for him. This gut reaction is from a genuine concern for his well-being, and a lack of education on this subject. It makes intuitive sense that a child that cannot handle the academic curriculum should do another one, with other children at the same stage. But the fact is that often the things that make intuitive sense, are wrong.

And funnily the attitude to inclusion depends a lot on the age of the child. Even though really, the older he gets, the more Michael will need to mix with peers from all levels of ability. Yet when we approach mainstream preschools, they are completely fine having Michael and his private aide. In primary school, this changes sharply. The options dwindle and everyone makes gentle suggestions about special schools. We get lists of the nearest ones every time we talk about education with anyone. Or we have to accept a public aide, allocated to the class rather than to Michael. The problem with that is that there is a high risk that they will not know Michael very well, will be more intrusive than necessary, and to put it bluntly are not terribly well qualified. So that he can in fact spend the most time with the least qualified teacher in the classroom while the other teacher concentrates on the rest of the children. In high school by all reports, things are even worse.

When people argue about inclusion, they are often arguing about different things. Experts talk about how it is beneficial because that is the pattern that they see over and over. But statistics mean nothing to the individual. Parents talk about inclusion not as a ‘concept’ but as it actually looks when it is implemented. In a particular swim class, or a particular school, and with a particular teacher and principal in mind. The way the other parents stare, or the way the teacher is always getting their kid in trouble, or how their child feels depressed and bullied in this particular setting. These things can be fixed but only with a lot of time and effort. A lot of battles have to be fought. You hear people say things about your child that make you want to wrap them up in cotton wool and hide them from the world. Understandably parents would rather go to a special school where their child feels safe and accepted than stay in a mainstream school where they have to fight for everything.

It can take a lot of work to find a school that practices full inclusion in an intelligent way. I cannot say how often schools have rejected Michael out of hand, just on the basis of intellectual disability. Out of any ten schools I speak to, only one or two will commit in any way. They tell me they don’t have the resources. I’m never sure what for, since I’m happy to pay for a private aide myself. Sometimes I’m tempted to tell them he is not from outer space and doesn’t need special oxygen. And ironically once news about a friendly and accepting school leaks out, it becomes the destination of choice for many special needs families. In at least two cases that I know of, this means that one class will have four or five children with disabilities and four or five teachers aides. Which of course more closely resembles a circus. And is kind of defeating the point.

As I have mentioned previously, our Plan A is to send Michael to an ABA based special school. After a year in a mainstream preschool. But this special school is only my plan for a couple of years, as a continuation of his early intervention. Its purpose is to give him the basic skills he needs to learn in a mainstream setting. Most students attend this school for only a couple of years. My long term plan (if I can make it happen!) is for him to be fully included in a mainstream school. With nice teachers, and students that want to help him and enjoy being near him. People that believe he is ‘teachable’ and operate on that assumption. Also, I would like it to have ponies and unicorns. Just because.

Otherwise we can always move to California right? I’ve heard good things…

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