Saturday, 8 September 2012

SEN, Paralympics and Parents

Before I start talking about SEN or the Paralympics, I think I should tell you my story:

In 2008, I became the proud father of identical twin girls. Unfortunately, their birth wasn't simple and without complication. They were born prematurely at 30 weeks. Expectant mothers of twins know that the birth of a set of twins will usually be induced early, about 35 weeks, but they came even earlier.

We were happily decorating the nursery when my wife fell ill. She was suffering from the winter vomiting bug, which started off the contractions. I had it too, but I can't moan. Neither of us was ready.  She was rushed to a hospital and  had an emergency cesarean with much haste and worry. Two tiny pink things made their way into the world only to be stuck into a clear plastic incubator for just under two months. We sat patiently next to the incubators for the whole time, worried and scared.   Luckily, they made it through all this and managed not get any infections or develop any further complications. 

A year later, we noticed that one of them wasn’t crawling. We then had the shattering news from a Doctor Doom that Mya had cerebral palsy and that she may never walk in her life.

‘May’ is the key word in that sentence, because, she does walk. Not perfectly. Not elegantly. Boy, she can walk.  Mainly over my toes.

My experience of being a parent of child with a disability gives me a new perspective on teaching. I think it is only relevant that I talk about it as the of the fantastic, awe-inspiring Paralympics draws to a close.  People have been full of comments about how good the Paralympics has been. Some say it is so emotional because of the journey these people have travelled; others feel it will change how people see people living with a disability. For me, I see it as a start for change.

The Fight
The term for Mya’s cerebral palsy is spastic diplegia. I am not surprised if you don’t know that term, as even Microsoft Word doesn’t recognise it. It means that her legs are affected by the damaged (caused by a lack of oxygen at birth) parts of the brain. She struggles to bend her legs and move as part of her brain doesn’t link properly to that part of the body.  Just as Word struggles to recognise the condition, so too does the rest of society. I cannot believe how much my wife and I have had to fight for our child to be recognised as being disabled by the state. We have had endless form filling, evidence gathering, hearings, meetings, consultations and discussions to get a statement for her.  Don’t think that this is because I am faking her disability; this is the normal procedure, dear reader, for any child with a disability.

You would think that, in this day and age of enlightenment, we would be able to recognise those in need. It took us years to get Mya a statement for primary school; we started as soon as we learnt that she had cerebral palsy. We knew there was a fight from day one. As a result of this, we have fought for equipment, shoes, physiotherapy and support. None of which comes easily and freely. What shocks me the most is that you can clearly have a disability, yet the support you need to cope or rectify things doesn’t come automatically or quickly.

Think of this when you meet a parent of a child with some form of disability or special needs. What has their fight been to get their child to this point? The message our society gives to parents of disabled children is one of fight, or your child suffers and loses out.  I am not militant in my manner, but I want the best for my child, and so far I have had to throw a few punches to get the bare minimum for my daughter.

More than just a disability
Cerebral palsy is a non-progressive condition. It doesn’t get worse, so what we are dealing with now is what we will be dealing with next year. I am more bothered about the social aspect of things. Like most parents, I want her to have friends. I’d be a strange parent if I didn’t, but a disability can come with a social disability too.

I cannot express to you how hard it is to live with the looks and stares.  When I go out with Mya and her walker, I get looks and stares all the time. Now, everybody looks. That is fine. But there is a limit to how long someone should look. I think, a few seconds.  Mya is ignorant of this, as she is too young, but there will be a time when she notices and that day will hurt me because I can’t stop them staring. It’s adults that stare, and of all types. The great thing about children is that they accept differences freely.

Think of this when you meet a parent of a child with some form of disability or special needs.  How do the other children interact with them socially? Could you do anything to build these relationships in the classroom? I have only praise for my daughter’s current school and her nursery school as they did and do everything possible for her. They know, like me, that teaching isn’t just imparting knowledge. It is about creating a sensitive, responsible member of a society.  At Parents’ Evening, the first thing I want to know is if she is interacting well with others and what relationships she has built. Yes, of course I want to know about academic progress, but really, and honestly, I want to know if she will survive in the big world when she is an adult.

In the past, I was incredibly ignorant of this next thing. I assumed, wrongly, that that if you had a disability, it took you a while to get used to it, but eventually you adapted to it and that was it. With cerebral palsy I have discovered that the real consequences of having a disability: the tiredness. The amount of effort it might take an average person is doubled, trebled or even quadrupled for a disabled person. Mya gets tired quickly because it takes more effort and thought to complete a simple action that we take for granted.  What we see as an automatic process for us can be a process that needs considerable thought, effort and a lot of exertion for her.  A simple five minute walk could wipe her out for days. It isn’t just the Paralympians that are superhuman, Mya is, every day.

The tiredness is one of the things that I think teachers should be aware of. Children don’t always know their limits. They push themselves and that is where situations can be dangerous in a classroom. The older they get, the more responsible they can be for this. But, I know that Mya will walk around all day if she could. However, the more tired she gets, the more likely she is to make a mistake. I don’t want to wrap her up in cotton wool, but I try to find ways to limit the accidents she has.

Think of this when you meet a parent of a child with some form of disability or special needs. Do you know the child’s physical limits? Do you know when to stop them?

Mya has support in lessons from a very good teaching assistant, but even at four she knows that this person can do stuff for her and she can relax and be a bit lazy. She’s not daft. As a result of this, I’ve spent the summer holidays telling her to get things herself because she is so used to someone getting things for her. It is basic human nature; I'd not do any marking if I had someone at school to do it all for me. Therefore, just having a T.A. isn’t enough for differentiation.

One person said something at school this week that made differentiation easier for me to understand. They said it wasn’t about making the activity longer or short, but just different. Differentiation even has 'different' in it to help you. Take Mya and PE, for example. More exercise will only tire her out. Less exercise will mean she doesn’t engage fully in the activity and she might get jealous of others or disaffected. A different or slightly related activity means that she will not be disaffected and it means that she isn’t working beyond her capacity. I think this can be easily related to work in the classroom.  

Let’s spell it out: Not more. Not less. Just different.  

Right to the Paralympics:

The fact that the Paralympics is on Channel 4 says a lot about society's views on the disabled, or as I like to call them Superhumans. They are not seen as being 1st class citizens (BBC 1) or 2nd class citizens (BBC2). These Superhumans don't make it on those television channels. They even don't even make it to 3rd class (ITV). Instead, they are on Channel 4, which is a fantastic channel and I love it for just the Superhuman adverts alone, but the whole channel issue gives us the message of how we view the disabled in this world - less than equals. NBC in America are not even showing it! It even happens on BBC News now. Olympics = First Item. Paralympics = Last Item.

I want my daughter to see a society on TV that reflects the real world. I want her to see more disabled actors on TV. I want her to see them in high-profile roles. I want her to see disabled singers in our charts. Because they do exist. I forever hear people talking about Eastenders being realistic, but it isn't for me. For my daughter to see people with cerebral palsy, her reality, on TV, she will have to watch 'My Left Foot' and 'Grange Hill'. Both fabulous.

What the Paralympics has shown the world is that no matter what battles they fight, no matter what looks they get, no matter what risks they face, disabled people can achieve and they are equals. They are more than equal. They are super. They are better than me and they are better than us.

My heroes are not celebrities. My heroes are not people who have saved lives, although they do a fabulous job - feel free to save me one day! My heroes are those living with a disability.

My hero (heroine) is Mya - she fights a daily fight that I never faced as a child, and she is going to win.
Thanks for reading my blog and thanks to Gwen for letting me steal her sentences,



P.S. I don’t want to sound like the ending of a TV show – ‘If you have been affected by events …’- but I am more than happy to talk personally with anybody who is going through a similar experience as I did. At the time  I had nobody else in the same boat as me and I would have really appreciated someone to talk to.

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