You have no idea what it’s like

“A long time ago, in 1944, there lived a scientist in Austria called Hans Asperger. Hans asperger spent many years studying all kinds of people and the ways in which we are all different, and he discovered a group of people who in some ways are very special. He found that these people were often very clever, with very good memories. They could also be very loving, friendly and caring people, and they often got very, very interested in one particular subject for a long time – sometimes so much that you could even say they were obsessed with it!

He also noticed that these special people sometimes had difficulty in understanding things – like why certain things happened, or understanding the things that other people said or did, and sometimes they felt embarrassed about their feelings, or very worried or cross about things, and also that they found certain things very frightening. And sometimes, because they were worried about something, it made them behave in a way which they couldn’t`t explain to other people.

Hans Asperger did a lot of work with these people, and he discovered that because there were some things they did`t understand as well as other people, they needed some extra help to learn these things. But, because they were very clever people, with good memories, they were very good at learning these things, and some of them grew up to be very good musicians, writers, artists or scientists, even though they still didn`t understand everything about other people, and sometimes got cross at things that didn`t seem right to them.

There are lots of people like this in the world. Of course everybody is special in their own way, but it`s a way of describing a person who is very clever and caring, but just needs a little extra help and understanding while they learn all the strange and confusing things about life and our world.”

[found digital dumpster diving: anon parent]

Aspi2.0

I stared a blog post and discussion form on Classroom2.0 for this, which I figured was the best place to ‘go fishing’.

As a few of my friends know, Mr.7 is a kid with Aspergers. Not so much a kid with special needs, more a kid with special interests and a different perspective on the world. These kids simply learn in different ways and are often ‘above standards’ in their given year group, highly perceptive, but struggle to deal with implied meaning in language, social situations (especially new ones) and struggle to understand emotional decisions ‘neuro-normals’ make.

They will often have an affinity with technology (machines are more predictable than people), and have some kind of interest focus. This can be transient – with the interests moving over time, or a range of interests : Star Wars, Mythology, Cars – to more extreme single interests. I once met a child was only interested in cornices.

However, they generally enjoy maths and sciences – subjects which are are less interpretive.

There’s way to much to say about it from a medical view point here, but as a parent, the most significant issue is that their schooling is not inclusive – even though they attend an inclusive school.

These amazing kids often appear to be just like every other kid, their needs are often not explicitly addressed in school.

This is a great video, I love to share with teachers.

Simple things make a BIG difference – one way or the other. For example, moving from one class to the next is a very anxious time, yet schools will almost no effort to ease the transfer (they are busy). Putting kids into more general ‘funded’ groups is another. In my case, our kid is stuck in a reading group with a few other kids. He can read, and he knows the kids – and they are always the same kids. This is a waste of time and funding – yet try as we might, the teacher and school fobs us off continually over this.

I think the start reality is that the mass of information on kids with Aspergers concerns itself with medial and social (behaviour) issues. There really is little out there (or that I can find) that is hands one classroom advice.

So here’s my idea.

To create a wiki – Apsi2.0 – that:

  • Can be used by parents to give to teachers as a general resource with classroom activities they can use.
  • Practical lesson/learning activities that last about an hour – that specifically address their needs
  • Differentiated use of technology to engage them in the same ‘classroom’ activities as their peers – but approached from alternate, less confronting social situations. (Quest Atlantis, collaboration, peer review etc.,)
  • To allow parents to develop their own ‘life long learning’ wiki for their kid that they can give to teachers, as a resource so the teacher knows what the students engages with or dis-engages because of.
  • Allow teacher/parents to share pedagogical success stories (be them based on individual focus’)
  • Allow teachers who DO engage properly (no lip service laggards) to share interventions and learning approaches that have led to better learning outcomes
  • A resource for siblings to learn about their brother/sister – and help support them
  • A resource for parents (struggling with schools) to self-help learning
  • A knowledge bank of lessons/strategies/activities that can be used – right out the box – to improve the lot of our kids in schools.

I am not saying that the whole spectrum of Autism is not a major concern in inclusive education. But I am saying, that from experience, the professional development and ‘self’ development in teachers is just not there. I am sure there are amazing teachers, but a lot of the time – these kids struggle in school as they try and interact with other students and kids. They need to learn how to interact. An example of this could be, a new student joins a class. There is an established group of friends, and one kids has Aspergers. While the new kid joins the group, the Apergers kid will not understand why, and probably see it as a bad thing, as it disrupts the social balance. The immediate reaction might be to try and get rid of the new kid. That seems logical. It was okay before, now it’s not – what changed? Easy – get rid of the annoyance. They don’t understand that making friends is the way that new people enter a group. They have to learn it, while most kids will learn it by doing it. The danger is that in attempts to bounce the new kid, they are segregated from them, and most likely segregated from their friends.

The teacher doesn’t understand this, and indeed might have no idea that the kid with Aspergers is frustrated, anxious and burning up to understand why thier world is suddenly under attack, not just from the new kid, but from the teachers and their friends.

My point is, that schools are highly social spaces. Teachers need to know how to, and be seen to, use any funded time, spare time to create social learning opportunities. They often don’t, or won’t. It’s easier to get a reading group than it is to address their specific interests or needs. It means doing something different – which is not in their program.

You might tell me, yeah but there is an individual learning plan, there has to be. I’ll tell you that is all crap. There might be a piece of paper somewhere, but that is not the reality that parents know. We can’t be there all the time, we can’t negotiate the world for them, so we must advocate for them – as they can’t do it for themselves.

Here’s a couple of examples of the replies I got in Classroom2.0 – these are exactly what we need to hear.

I showed your post to my daughter and she suggested having a section on your Wiki for the siblings of children with Aspergers. She benefited a great deal when she understood her brother’s special interests and wanted to know ways to become closer to him. Our school system found simple ways to let her become a resource for my son during the school day without making her assume adult responsibilities. For example, the school scheduled their lunches so they could eat together. They simply felt like they were enjoying time together and never realized my daughter was providing a model of social interaction each day for half an hour. She never resented this time together and eventually my son began to sit with other students and interact successfully. Tanya Travis.

Here is one from a teacher, David Wees

I had a student with Asperger’s who spent every lunch hour reading by himself. His favourite thing? Japanese mythology and culture. So I introduced him to a collectible card game about Japanese mythology and then introduced him to some people he could play with. Now he plays cards at lunch time with his peers, interacting socially far more often than before.

How amazing would it be to hear things happening for my kid. So far this year, I have had nothing positive or volunteered by the school, yet have been ‘up there’ several time to get tea and sympathy messages – when quite clearly they are wasting his time and mine. It is all very frustrating for us, but easier to pass off than address by the school.

Critical, hell yeah! – but we want our kid to be in public education and to be included. As he goes through life (not in a wheelchair), the world won’t deal him a different deck, but the biggest need he has is to learn about how the social norms work. He won’t pick it up unless it is taught. We do it at home – but we want to see it in his school – and so does every other parent like me.

I’d hope that this something I can ‘teach’ parents in the future, as it seems to me to be a direct positive step.

So that’s my ‘new’ thing – if I have a ‘thing’. I’m over the apathetic approach, the light on pre-teacher preparation. Right now, as a parent, I think this is the ONE thing I can do for my kid. Have a resource that explains to his teacher how he has learned over his whole school engagement. I would love it if his teacher added to it – but it’s not likely this year. I think this every year, maybe I’ll get a teacher who ‘gets’ him.