Friday, January 2, 2015

Autism and inclusion in the classroom

I was chatting online with an old high school friend a few weeks ago and he asked me about my thoughts on inclusion in the classroom. I responded that answering that would take me some time and I would get back to him. I've been thinking a lot about this in recent days, as during 2014 we took both MasterL and MissG out of mainstream schooling, opting for them to do their learning at home. The decision was made for different reasons for each of them, and the exact solution is different as well, with MasterL now enrolled in Distance Education and MissG about to be registered for Home Schooling (I will write more about the differences between those arrangements at a later time).

The short answer to the question of what I think inclusion in classrooms would look like is..... I have an idea, but I don't completely know. 

I can, however, tell you what it is not. 

It is not the current system we have in public schools in New South Wales, Australia. Both our Federal and State governments seem determined to remove funding and support for kids with extra support needs from the mainstream schooling system in our state. They have removed general funding from schools and specific funding for kids who are disabled. The result of this for our family was the removal of 3 of our 5 school aged kids from the public school system in one year. Those who did and would have qualified for individual support under the system that existed pre 2012 no longer receive it or are eligible to even apply because they are not "disabled enough", but the school system and the teachers in it are so stretched that they cannot provide adequate or appropriate supports for my kids.

To try to answer the question of what I think inclusion would look like I have been asking myself, How could this have been avoided? There is no simple answer.

The school staff did try. They, for the most part, were truly wonderful. They did their best to support my kids and make things easier for them. I understand how hard it is for them. I am a teacher myself. 
I know what it is like to have a student not coping. The room is not right, the environment is too much, the day is too long, the breaks are not frequent or long enough, the number of students in the room is just too many and the number of staff on the floor is way too few. Controlling, rather than empowering, becomes the focus necessary for survival and very few children can thrive under those circumstances. I know the feeling of helplessness and inadequacy when you just cannot help a child from within the constraints the system places on you as a teacher.  

Solving the issues I can see requires a change from the very core of the education system all the way out to the edges. It means new policy, new procedure, new minds to work on it and new funding to build it. It requires new research, new ways of thinking and new methods of training. It requires more teachers with better pay instead of funding cuts and pay deals that won't even keep up with inflation. It requires an investment that reflects the true value of society caring well for its most vulnerable. It requires an investment politicians seem unwilling to make.

Now, none of what I am saying is new to this discussion. Many others have said what I am saying. David Gonski and a team of people spent a number of years investigation and putting together a report of recommendations to the Federal Government. I read the report, and I hope Mr Gonski and those who worked with him will forgive my gross simplification of their work, but essentially what the report said was that there are some students who require more support than others and the schools those students attend need to be funded better if they have any hope of providing that support. Our current government wants us to believe they agree and so have promised to fund the first few years of the roll out of the suggested strategies hoping, I think, that no one will notice that all the really essential stuff that would make the implementation of the Gonski Report recommendations worthwhile won't happen within the timeframe they are willing to commit to.

But let's move away from the political and look at the idealistic stuff. What would a classroom that could successfully support my kids look like?

  • It would be well lit by natural light rather than fluorescent lighting. 
  • There would be numerous chill out zones that the students could access as they felt the need to. 
  • There would be minimal large group instruction time, with enough teachers and resources to provide small group and individual assistance for all learning experiences. 
  • There would be minimal bookwork expected, and an awareness of the difficulty many students have with text heavy learning leading to facilitation of hands on and interactive learning experiences provided as a supplement or alternative to text based learning as appropriate to meet individual needs.
  • It would look unorganised to an outsider, but be structured in a way that each students needs for routine were met and communicated in a way they understand.
  • It would involve mess and noise and play and laughter, even for older students.
  • It would involve teachers who are prepared to learn to be partners in education rather than leaders who must teach to the outcomes of standardised testing.
  • It would require out of the box thinking.
  • It would include students as planners and decision makers, with teachers as facilitators and collaborators whose goal is to assist rather than enforce compliance.
  • It would recognise that much of the value of schooling is not the actual academics, but rather the process of learning to learn and be confident and follow your instincts and advocate for yourself.
  • It would be flexible and responsive to students leadings and interests and ever changing needs.
  • It would be indoors and outdoors and real life hands on practical learning as much a possible.
  • It would allow for screen time as a coping strategy that is not frowned on.
  • It would allow for communication methods that do not require vocalising.
  • It would be gentle and encouraging and never coercive or manipulating.
  • It would assume children know themselves and their needs and would listen carefully.
  • It would value diversity in all its forms and would encourage children to genuinely be themselves, to confidently ask questions and explore answers, to see themselves as both learners and teachers, and it would hold sacred the right of each child to say no when they need to.

Those things in place in a classroom would begin to make public education more accessible to my kids and would be a start at making inclusive education available to all. You can call me unrealistic if you like, you can say I am asking too much. But I do think that it is pretty obvious that the current system is not working for many of our kids and if we aren't prepared to think differently about education we are only going to see things get worse. If we say we value education, and we want to serve all students well, the approach we are taking must change.

Inclusion is not something we can pull off by adding ramps and rails and lunch time library clubs and sticking kids in support units and saying we are trying our best. Real inclusion requires a complete change of approach that aims to not just add disabled peoples needs as an extra at the end of our planning, but incorporating them from the beginning. 

Diversity is valuable and failing to plan to include all students is short sighted and narrow minded. Until the policymakers and funding providers realise this and are prepared to act on it, we will continue to see children like mine failed by the system that is supposed to exist to prepare them to be their best. And that is something we should all be ashamed of.

Thursday, November 6, 2014

.... I dare you

Before you read this article, please be aware it contains a description of the murder of an Autistic child, discussion about murder of Autistic children and discussion about sympathising with the murderers. It also references the AS video "Autism Every Day". Some readers will find this article very triggering. 

Three years ago a mother wrote a blog post in which she explained all the ways in which she could relate to a video called "Autism every day".  In this video, a group of mothers explained how hard their lives are, how they grieve, how they have had to give up their dreams. One of them, while her daughter listened, told the viewers that she had seriously considered killing her daughter by driving her off a bridge in a car. 

And we are told to feel sorry for these mothers because their children are Autistic. 

Today the mother who identified with this video went for a walk with her Autistic son, and threw him off a bridge to his death. 

His name is London. He is 6. He has blonde hair and blue eyes. He reminded me of my son in the video I saw of him, with his serious smile and the tilt of his head. 

And we are told to feel sorry for this mother because London is Autistic. Was Autistic. 

Only I can't feel sorry for her. 

I can see him bewildered and screaming as he left his mothers arms and fell. I can feel his pain as he hit the water. I can see him floundering in the water, confused and dying.   

I can imagine you sympathising with me if I did the same to one of my children. 

But I cannot feel sorry for her.

So, tell me again how important it is to tell "the reality" about Autism far and wide so parents don't feel alone, and I will show you a mother who murdered her son after finding she wasn't alone in her desire to be free of her Autistic child.

So, tell me again how it is alright that she ended his life so he didn't have to grow up disabled. And I will show you my son, who I saw in London at the same age but who 10 years on is doing so well.... becoming an insightful and confident young man despite the world refusing to accommodate him. 

So, tell me again how raising "awareness" helps my children, and I will explain to you the ways I have to protect my children from the news so they don't have to see you all sympathising with parents who murder kids just like them. 

Go on. Tell me how hard her life is and how much she needed help because her blog said this and that and all the other excuses you can come up with to justify her horrendous actions against her son. Her precious son. Her little boy, so much like mine. 

Please do tell me again how I should walk in her shoes before I criticise and I will ask you- how do you know that I don't? 

Tell me you understand how she feels. And I will tell you that you will never know for sure whether I know how she feels, because even when I do have a tough day or week or month I will not put that information out there for my kids to read when they are older. I will not add to the popular story that kids like mine are a tragedy, are worth less than others, make my life difficult and stressful and something to be endured. 

Tell me that I must not understand because my child must not be as "severe", and I will tell you to just shut up and listen to me when I say that with all this talk you carry on with every single time one of my children's tribe is murdered by their caregiver you put my children's lives at risk. 

Go on..... tell me. I dare you. 

Tuesday, November 4, 2014

When school isn't working anymore

Those of you who have been following my parenting journey for a while know that I've spent a lot of time advocating for my kids in their school environments. We've had varying levels of success over the past few years in terms of gaining appropriate supports for the kids within the mainstream schooling environment. 

We've worked with some amazing teachers who have given their all to help the kids. We've also met some teachers who just don't "get it" and don't seem to want to. For the most part though, school was working well enough for the kids. 

Until this year. 

So we made a decision. 

Without going into too much detail, we decided that both MasterL and MissGs social and communication support needs were not being met, and that MasterL in particular was so overwhelmed that his stress was having an affect on his ability to learn in the school environment. MissG was still learning well, and enjoying school, but she was exhausted, and told us she did not want to go to school anymore. 

It's not an easy decision to make, on the one hand, because deciding to homeschool your children requires a substantial commitment of time and resources.... and to be honest, was not what I had anticipated we would be doing right now. But, on the other hand, it was an easy decision because we do not ever want to see our kids so overwhelmed that they cannot cope. I realise some people are not as lucky as us to be in the position to bring the kids home, but for us right now, it works. 

MasterL is enrolled in a Department of Education Distance Education school. MissG is currently away from school on an approved exemption, and is in the process of "unschooling". We will shortly be registering with our state homeschooling authority. 

The changes in both children since leaving the environments that were so stressful for them are easily observed. They are both calmer, happier and more relaxed. Meltdowns, shut downs and periods of overwhelm are occurring significantly less often. They have the opportunity to retreat and self regulate as they need to. They can take time to be creative instead of constantly needing to be on alert. MissG particularly is enjoying setting her own pace and seeking out learning that engages her and is relevant to her interests. 

So over the coming months this blog will undergo another change of focus.... we will be talking about home education and how that works in our family, along with other things that catch my interest or set off my injustice alarm. This parenting gig sure is an interesting journey. 

Monday, October 13, 2014

What I want my daughter to know about the Stapelton case

Dear MissG,
one day when you are older, you might come across a name on the internet. The name of a mother who tried to kill her daughter- an Autistic girl like you. 

You might see lots of parents saying they are just like her, that mother. 

You might see them saying things like - they can understand why she tried to kill her daughter because she is Autistic and so hard to live with. 

You might see them saying things like - any parent of an Autistic child could snap and hurt their child. But I want you to know something. 

They are wrong. 

You might be like Issy Stapelton. But I am not like her mother. 
I will never be like her. I promise you this.

I wanted you before you were born, after you were born, and when you were diagnosed. 

I still want you when you have tough days, when I am tired, when I am frustrated and when I would rather please myself. 

I loved you before you were born, after you were born, and when you were diagnosed. 

I still love you when you have tough days, when I am tired, when I am frustrated and when I would rather please myself. 

I will never use your pain to justify my feelings.

I will never expose you to others in your vulnerable moments.

I will never blame you for my problems.

I will never try to hurt you. Ever.  

You are my precious child. I will love you. I will help you. I will protect you. Always. 

I hope when you are older, and you hear about her, you will also find that Issy knows there are those of us who think she is valuable. 

I hope you know that there are plenty of people who think you are valuable. 

I hope you know there is justice for Issy, and for all Autistic people, and that you are loved and appreciated, just as you are.

Your Mum. 

Sunday, August 10, 2014

I'd like to be able to shop at Build a Bear in Australia

The #boycottAutismSpeaks movement appears to have had a victory this week, as Build a Bear Workshop in the USA has announced it has ended its support of Autism Speaks.

This is very exciting news!! 

I'd be even more excited if it meant I could go buy bears for my kids.

Unfortunately, Build a Bear Workshop in Australia supports Autism Awareness Australia, who are responsible for spreading the same message Autism Speaks does. Their video 'Autism Awareness' is full of fear speech and tells the world that my kids minds and personalities have been stolen by Autism, and compares Autism to caner diabetes and AIDS. You can view the video here- but be warned, it is a horrible video. 

So, until I know Build a Bear is no longer supporting Autism Awareness Australia, I won't be shopping there. 

You can read an article I wrote on this topic during April this year here. This article was picked up by The Huffington Post, and can be read here.

Wednesday, August 6, 2014

What if I told you I am Autistic?

Let's play devils advocate.

If I said I was Autistic, would that change the way you think of me?

Be honest. 

Would it? 

Right now, you think I am a non Autistic parent of Autistic children. So when I talk about my children's needs you think I know what I am talking about, because I look at things from the perspective of someone who is not disabled, can communicate and understand communication the same way you do, and who is capable of determining what is the best course of action. 

When I go in to my kids school to advocate for my kids I do so without fear of being told I am misunderstanding the situation. I can talk to the teachers as a peer. I don't get told I am over-reacting because of my own experiences and "issues" the way my Autistic friends do. 

When I write here on my blog, or for the Huffington Post, I don't have to deal with the same kind of dismissive comments my Autistic friends face when they write. I am afforded the privilege of being regarded as someone who knows what they are talking about and has a right to speak out because I have experience as a parent. 

If I was having trouble with some aspect of parenting my kids and I went to a professional for help, I do not have to worry that the professional will see a diagnosis I have as a reason to suspect I am not capable of looking after my kids and have me investigated by child protection authorities. Some of my friends do have to worry about that. 

I would like to think that all people are given the same respect. Unfortunately, the experiences of my friends tell me differently. 

So, if I told you I was Autistic, would that change how you see me and what I write?  Would my words still have the same credibility? Would my experience still be valid? 

I know you think the answer is that your opinion of me wouldn't change...... but, go on, be honest. Think about how you have reacted in the past to people you consider different than you, less capable than you, disabled in some way.....  think about it for a while...... take a few weeks to observe your own reactions. 

Can you honestly say that if I told you I was Autistic your opinion of me wouldn't change, not even just a little bit? 

Saturday, July 26, 2014

The letter I wish I had read when my children were diagnosed with Autism

From time to time, I notice a resurgence of the "letter to the new 'autism parent' from the experienced one" sort of articles in the blog/facebook world. 

I get why these posts are popular. When your child is diagnosed with autism, most people go through a period of feeling sad and overwhelmed. These letters tend to focus on that and give strategies to deal with the "awfulness" that life is with an Autistic child. 

However, I do not find the information in those articles fits my experience with my kids, or contains any particularly helpful advice for me. They never did. When I saw articles like these, even in the days soon after my first Autistic childs diagnosis, they left me feeling more unsettled.... definitely not encouraged or comforted. I figure there are others out there like me, so it is to you I am writing today. 

Dear Parent,

So, your child has just been diagnosed with Autism.

You might be feeling a bit stunned. You might be feeling overwhelmed. You might have known for ages but just had it confirmed. You might be relieved. You might be concerned. You might feel sad.

So, what do you do now? 

Well, you could go looking for a list of things to do. You could join every Facebook group you can find with "Autism" in its name. You could ask around and see what therapies everyone enrolled their kids in. You could seek the advice of other parents of Autistic kids. 

I did all those things. They seemed like the most sensible things to do given my child had just been diagnosed with Autism. After all, everything I knew about Autism was framed by the dominant belief that Autism is something that needs to be fixed in order for the Autistic person and their family to be happy. 

In hindsight, though, I'm convinced there were other - more helpful - things I could have done instead. Here is what I now think it would have been helpful for me to hear.

Autism is not a tragedy that requires immediate action. Nothing has really changed for you and your child with this diagnosis. They are the same child as they were yesterday. 

There is no rush. Despite what the professionals will tell  you, you have lots of options to choose from now. So, take your time. Have a look around and check out what is on offer, then choose what fits best for your child and your family. 

You know your child better than any one and you are capable of making decisions in their best interest.

Some people might be telling you that you have to act quickly to get services and therapies in place. They might be telling you there is no time to waste because the younger you treat Autism the better off your child will be and the more chance you have of them growing up to be normal. 

I would encourage you to slow down. Breathe. Think. And read.

Do some research. Don't just accept the dominant story you hear about Autism. When you are looking into therapies and strategies hold them up to a high standard, compare them to what you would find acceptable for a "typical" child and if the thought of subjecting a "typical" child to those therapies seems wrong, don't choose that for your Autistic child either. 

Research throughly. Read widely.

Most importantly read what Autistic adults have to say. I cannot stress this enough. Listening to Autistic adults changed everything for me. 

Listening to Autistic adults changed everything for me. 

And consequently improved my children's lives. Yes, you heard me right. 

Me choosing to listen to Autistic adults has improved my children's lives. 

There are plenty of Autistic adults out there writing things you will find helpful. 

Read Nick's essay What is Autism?
Read Landon's book I love being my own Autistic self

Read the words of AlyssaCynthiaIbbySparrowAmyNeurodivergent KHenry, and Michael.  

Seek out communities run by Autistic people. Communities like "We are like your child" and "Parenting Autistic Children with Love and Acceptance" (jointly run by Autistic people and parents of Autistic people). 

These people are your childs tribe and their words are your opportunity to truly understand your childs experience of the world. 

Listen. Read. Learn.

And hope. In the face of all the negative talk, all the tragedy rhetoric, all the despairing messages from "autism parents".... hope. HOPE. 

Things may be hard right now, but they will not always be. You will find your way. Your child will find their way. Spend just a little time with the sadness that follows a change of plans if you must, but move on to hope. You will be happier for it and so will your child.

With you on the journey,