TV or not TV… that is the question.

Every parent wants what’s best for their child.

A sweeping statement, but one I’m fairly confident is true.

The problem is figuring out the definition of ‘best’. Never mind what this book says, or that book says, or what other mums say, or what the health visitors say… I’m not always sure that I know what I mean by ‘best’.

I mean, my baby is only 5 months old and yet already I’m finding myself trying to work out how to go about life with her. How long it’s ok to leave her crying before going to sleep, the ‘best’ way to get her back to sleep the 7th, 8th, 12th time she wakes up during the night, whether it’s ok to allow her to be entertained by the TV…

Let me explain a little bit more. Most people advise that breastfed babies aren’t fed to sleep every time they wake up because the likelihood is that they’re not hungry but just looking for comfort and they need to learn ‘good’ sleep habits at an early age. And I have previously been known to say (probably rather pompously) that I would never use the TV to entertain a child rather than playing with them.

The thing is though that, as much as I would like to be, I’m not a super mum. I’m not really super anything in fact, I’m just a very normal (and permanently sleep deprived) person.

Last week I was trying to eat my tea with a very wriggly and slightly grumpy baby on my knee. Eating with one hand isn’t easy at the best of times but the wriggling was making it harder than usual. So I turned the laptop round, searched YouTube for Peppa Pig and hit play. It worked. She remained still, interested in the colours and moving shapes long enough for me to finish my tea. I don’t think this is a bad thing, but I did feel a slight twinge of guilt when I sat baby down in the living room to play with her and the first thing she did was to turn and look at the (switched off) TV.

I don’t want my baby to be plonked in front of the TV to keep her quiet.
But I sometimes just need a few minutes to catch my breath.

I don’t want my baby to learn bad sleep habits.
But I need to make sure I get enough sleep so I can look after her properly during the day.

I don’t want my baby to rely on me for sleep forever.
But I can’t stand to let her cry when she’s so little.

The best piece of advice I’ve yet been given was simple: you need to pick your battles. Sometimes it’s simply not worth fighting when the fight is not worth the outcome. This means that I try not to feel guilty for letting her watch TV when I need to have some brain space to myself. I try not to worry about the future of sleep when she wakes up for the 6th time and I just need to get her back off again as quickly as possible. I try to remind myself that she has only been in this world for 23 weeks and if she needs to cuddle into me for comfort during the night then that’s ok.

I don’t know anyone who is a super mum. And that too is ok. And as hard as it is, I think I’m learning to have confidence in the decisions I make without worrying what other people will think, or whether my child will be ruined for the rest of her life.

Sometimes I just have to remember to pick my battles. (And thanks mum for the advice!)

Hot chocolate and baby sick

So I’ve been a bit off the map for the past few months. The past 5 months to be precise.

The reason?

A new addition to our house and family. A beautiful baby girl. And I’m not biased, (honestly) she actually is the most beautiful baby in the whole world. She’s such a joy and delight to be with and I spend each day with her growing more in love and more in awe of her.

This is all true. BUT (there’s always a but)…

I don’t want to put anyone under false illusions. Babies are hard work! The past 5 months have been a blur of sleepless nights (sleep deprivation is one of the cruellest forms of torture), ear-splitting screaming, horrendously potent nappies (seriously, how is it that tiny people make such horrible smells??) and on demand (and often painful) feeding. Oh yeah, and the sick. ‘Baby sick isn’t really sick’ I was told. Liars! Sick is sick. Full stop. And babies produce a lot of it. I’m pretty sure that sometimes it’s more than they’ve taken in but what do I know?

And so it is only now, as I sit with a soya hot chocolate, (apparently a large amount of my baby’s sick was probably due to a milk allergy. You live and learn!) that I actually feel like I’ve got time (baby’s asleep) and energy to form proper adult sentences.

There is so much that I want to say. So much I have learned, and am learning. But nap times are short and so I will save my two pennies worth on breastfeeding, new-mum guilt, angry babies, the poo conversations and the difference between ‘me’ and ‘mum’ for another time.

I reckon I’ve got about 4 and a half minutes before baby wakes up, so forgive me while I dive into Harry Potter for a few precious moments of quiet.

Why I (almost) feel sorry for Richard Dawkins

So, Richard Dawkins thinks that the moral thing to do for babies diagnosed with Down’s Syndrome in the womb is to abort them so that the parents can ‘try again’.

I’ve just read over that sentence 4 or 5 times because I can’t believe that I have actually put words together in such a way that they read that sentiment. I love words. I love writing, and I love language. It makes me feel sick, angry and incredibly sad that words have been used to convey such a despicable thing.

Before I start properly, I just want to say that I’m not trying to offer any sort of comment or opinion on abortion or right to life. The problems I have with what Dawkins said are his comments that it would be ‘immoral’ to allow a Down’s Syndrome baby to live. I offer no judgement on people’s decisions in their own lives, but I do have a problem with saying that it is immoral for Down’s Syndrome babies to be born.

Here are Professor Dawkins’ reasons for saying what he said.
1: A foetus has no human emotions therefore abortion is not wrong
2: Individuals with Down’s Syndrome have nothing to offer society and so it is better for everyone that they are not brought into the world at all.
(As a contradiction, by the way, he seems to think that those children and adults with Down’s are alright to remain alive. How magnanimous of him.)

Aside from the immense anger I feel at the injustice of his comments, I can’t help also feeling a small amount of pity towards Dawkins. He clearly places at once such little value and such an impossibly high value on human life.

I believe that every individual (from conception) has value, is valued and is important. Not because they might one day be scientists, or engineers, or diplomats, or shop keepers, or opticians, or farmers, or politicians, or computer programmers. And neither because they might be kind, or generous, or loving, or helpful, or funny, or empathetic. But simply because they have been created and are alive.

Human value cannot come from what we can do, what we are capable of or even how well we can interact with others. Because if it did how would we even begin to measure that? There would always be some people who didn’t make the cut and then we’d be living in some sort of ‘Brave New World’ or ‘The Hunger Games’. But maybe that’s actually how Dawkins views us all to begin with?

Bringing things closer to his specific comment, I have so many angry questions I want to ask him. Why Down’s Syndrome? Why stop at abortion? Why not euthanase all individuals with Down’s? Why stop at Down’s Syndrome? Why not get rid of anyone with cerebal palsy? Or Autism? (Yes I know he stated that Autism is different but I’m afraid that just doesn’t wash.) What about multiple sclerosis? In actual fact, if human value is based on productivity and contribution to society why not also throw in the deaf, the blind, people with no legs, people with heart defects, mental health problems, curvature of the spine…

You see it is not our job or our place to decide who is valuable. The word ‘value’ has so many layers and can be viewed from so many angles. There are so many beautiful faces to the human existence and anyone who has spent time with someone with Down’s Syndrome (or any other disability for that matter) will tell you how much light and joy they can bring to others as well as how much they can live a happy and fulfilled life. No, they might not become doctors or nurses or lawyers, but then neither will a whole chunk of the population for many other reasons.

As for his first point- that a foetus doesn’t have human emotions. I’m not even going to begin getting in on that debate, but all the points I’ve just made about human value still stand.

The more I think about it the more I think I actually feel sorry for Richard Dawkins. (As well as being furious and angry with him.) The beauty of humanity is its richness and its depth. It’s in something so simple as experiencing excitement, or knowing peace, or being so closely entwined with others and yet still being able to learn something new and delightful in each other.

Professor Dawkins is missing this and this is both a great travesty and a complete outrage.

 

Here is a great article in response to Dawkins written by a mother of a girl with Down’s Syndrome:

http://www.huffingtonpost.co.uk/hayley-goleniowska/richard-dawkins-down-syndrome_b_5697336.html?1408622091&ncid=tweetlnkushpmg00000067

 

The Autism Files: Where’s Wally?

Do you like Where’s Wally books?

I personally hate them. If I can’t find him within seconds then I get frustrated and annoyed and usually end up slamming the book and chucking it down in a thoroughly bad mood.

A lot of people with autism view the world from a different perception from most other people. (Please note that although I am making generalised statements, I am also careful to say ‘most people’ or ‘a lot of people’ because of course there will be wide variations within people.) One of the areas in which many people with autism are different is their visual perception of details. Many people with autism have a very good eye for details. They may be able to find a dropped hair pin quickly. Or notice changes in a room’s decor or layout that are quite subtle.

Uta Frith (a developmental psychologist) talks about how many people with autism are exceptionally good at finding Wally quickly. She has put forward a theory termed ‘central coherence’ which refers to the ability to see the bigger picture. For a lot of people with autism, this is something that they find very difficult. Their attention to and focus on detail can result in not being able to ‘see the wood for the trees’. So while someone with autism might be able to find Wally really quickly, they might also struggle to give a wider perspective on what is happening across the whole picture. Likewise someone with weak central coherence might struggle to understand the gist of a story, a comic or a conversation because they can only focus on the individual details.

Apply this to the perception of the every day world and I think you’ve got a recipe for very anxious living. You might have read my earlier sentences about being able to find things quickly and thought that sounded like a good trait to have. And it would be. But imagine if you could never turn it off. If every single thing, situation and environment that you looked at was made up of each tiny detail. I think this would be exhausting and stressful. If you looked at someone’s hair and didn’t just see ‘hair’ but saw each individual strand. And if any of those strands were out of place or twisted and that bothered you, this could become highly distressing.

Someone once told me of a young man who simply could not walk into the living room of his own house after an armchair had been moved from one side of the room to the other. His central coherence was so weak that once the chair had moved, the room was no longer his own living room. He could not enter it because it was not the room he had expected it to be.

There are two faces to every coin, and two sides to every story. For people with autism there might be some benefits to being able to focus so intensely on details- this article suggests that people with autism are more skilled at using airport screening cameras for example. But there are also complex difficulties with not being able to read or understand generalised concepts and situations, and the immense stress that can come from having to focus in on every little detail of every single thing you see.

Related articles:

http://www.springerreference.com/docs/html/chapterdbid/334619.html

http://autism.about.com/od/causesofautism/a/AutismBrain.htm

http://www.autismspeaks.org/science/science-news/small-study-suggests-adults-autism-excel-screening-tasks

The Hunger Games

Ok, so I know I’m a little late in catching up with this, but I watched The Hunger Games last week. (And I’ll come clean and admit that I haven’t read the books yet- but they are definitely on my list to do so.)

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Before watching it, here’s the extent of my knowledge: there is a character called Katniss, people are forced to fight to the death in some big arena, and every teenage girl in the country is now wearing a mocking jay pin. So I really was going in with fresh eyes.

What struck me straight away was that this is another example of totalitarian literature. Along with George Orwell’s 1984, Aldous Huxley’s Brave New World or Ray Bradbury’s Fahrenheit 451. I was reminded too of films such as V for Vendetta or The Matrix.

These fictions all represent worlds either in the future or historically where the state has complete control over people’s lives. Often you’ll find that people have been divided into categories or castes, which is evident in Hunger Games. People are either genetically formed or forced througDistrictsPanemh submission into different roles. In one of the storylines of Cloud Atlas by David Mitchell, another novel with similar themes, the human race has been divided into purebloods who are the ‘real’ humans, and fabricants who are produced for specific roles for example waitresses who can work for 18 hours a day and are sustained by a protein substance that also keeps them repressed and subservient.

I’m not going to go over the synopsis of Hunger Games, but there is a very strong base theme of dystopian society. I find this interesting because I think that often the key to understanding literature is to look at the environment in which it was written.

I certainly don’t pretend to have a very deep or thorough knowledge of politics, but I do know that no matter how perfect a political model on paper, the practical implication of it is complex and tricky. People and power rarely mix well and these fictional worlds act as both an outworking of fear and a warning of what could be.

class division1Even in the real world here in the UK there are complicated positions and standings in society. While we may be attempting to move away from such stark class divisions as were evident when Orwell wrote 1984, there is an ever present malcontent with the pattern of our society where some have much and others little.

There are questions to be asked, and answers given in literature to be considered, about where responsibility lies for inequality. I am looking forward to watching Catching Fire which I know develops these themes further.

 

 

Plus, Katniss is the most awesome strong female character and I can’t help love her!

The Autism Files: the problem of time

What is time?

I don’t want a complicated philosophical answer, I just want to know- what is time?

It’s not that easy to answer is it? Most of us know what time means don’t we? It is the rising and setting of the sun, it is the ticking of a clock, it is the passing of… time… Hhmm. There’s a name for describing something using the thing itself and it’s not really very helpful if you imagine having to explain time to someone who has absolutely no idea what it is or means.

Do you know how long a minute is? I challenge you to test yourself and set a timer then don’t look at it and see if you can judge when the 60 seconds have passed. It’s actually not that easy when you are trying hard to think about it (unless you count the seconds “one Mississippi, two Mississippi…”) But having said that, most people have a general idea about the passing of time. We can gauge roughly how long it will take to travel from A to B taking into account the types of roads and the traffic for that time of day. We can gauge how much work we can get done within a given amount of time. We know when it’s ok to push time- to leave a bit late, to carry on something after the ‘finished’ time has gone past and we mostly know when time really matters and we have to stick to set times.

So now imagine someone with Autism where they cannot visualise or conceptualise the idea of time. Some individuals have very little awareness of the passing of time and may be governed only by feelings of hunger or tiredness or daylight vs darkness. (Though you can see the problems even with this when days are much longer in summer and shorter in winter.) Others have the beginnings of an understanding of what time means, but it is often a very rigid and inflexible one. Therefore you can imagine the upset and confusion when at a doctor’s appointment for 10am and they are not called until 10.20am due to delays. Or when a cake recipe says bake for 30 minutes but for some reason it isn’t ready and needs an extra 10 or 15. Or even at another level still when an individual is told that their dinner will be ready on 15 minutes but they have absolutely no idea what 15 minutes is and begin to get upset and anxious after about 25 seconds.

Visual aids can help here. Sand timers often prove invaluable as the individual can sit and watch the sand trickle through until it is all gone and they can then have their dinner/move on to the next activity/get their coat on to go out. But this isn’t very helpful if the person supporting does not know exactly how long they will have to wait.

I cannot imagine how stressful the world would be if I had no idea what time was. If I could tell the time but I was unable to perceive how long ‘time’ lasted. I can’t imagine what it would be like to know that something was happening next week but be unable to visualise how far away that was.

There are many things that cause upset and anxiety for people with Autism. But not knowing where they are in time or when things are going to happen is one of the longest enduring and probably one of the most terrifying.

What’s the message?

I have been wanting to blog about this for quite some time. But I have to confess I’ve been a little nervous and anxious about writing it because I’m not quite sure of the best way to say what I want to say.

Perhaps I’ll start with a little story of when my brothers and I were younger and living at home.

When I was 12 all I wanted to be was a marine biologist.

I wanted to swim with dolphins and whales and be like the kid from Free Willy. (I was a 90s kid!). My parents showed me the things I would need to learn. I would need biology and chemistry. I would probably study something like zoology and then I would probably have to research and label samples of plankton for a long time before I got to just spend all day mermaiding around with dolphins. I think that was when I changed my mind about that!

When I was an older teenager I got really into learning foreign languages. I loved Spanish and I decided to study languages at university and spend a year in Peru before going to take the opportunity to do two things I really wanted to do: learn Spanish as fluently as possible and work with really disadvantaged people. My parents went with me to open days and information evenings and talked with me as I excitedly explained how I was going to go and live in South America as a translator and work with people who lived on the edge of nothing.

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When my brother was about 15 he wanted to go to clown college. He is a really talented juggler and all he wanted to do was learn more. He used to spend hours on the driveway hanging onto the kitchen windowsill while he practised going backwards and forwards on his unicycle before he could ride around the street juggling clubs at the same time. I remember going with him down to London to the open day at a circus skills college. My parents paid for the tickets and wished us all the best as we went and wanted to hear everything about it when we got back. As it happened my brother’s path changed as he got older and he chose not to go to university but to work within wiring and electronics. My parents could see straight away that he’d found his niche as he’s very good at his job. In fact when he was really young all he wanted to do was work at Lego Land building the models. I think there are definitely some similar skills going on there!

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I have another brother who chose at about the age of 2 and half that he wanted to be a drummer. My parents bought him a drum kit and eventually a sound proof room to go with it, much to the relief of the rest of the street! They proceeded to help him carry his drum kits around for the next 19 years or so as they drove him to concert after concert and gig after gig. He’s now graduated with his degree in jazz drumming and is doing the only thing he’s ever wanted to do.

I hope I haven’t bored you with our childhood history. And I wonder if you might have picked up on the main thing that I’m trying to say. No matter what we wanted to do when we were children, our parents said ‘fantastic, that sounds great.’ Clown college, translating in South America, bashing the living daylights out of drums… All our parents ever said to us was ‘do what makes you happy and work hard at it.’

I know other people, both my age and younger, whose parents don’t say this. They say ‘you must work really hard and get into a good university. That’s how you will be successful.’ When my friends used to tell me these stories I felt sorry for them. I have had conversations with people older than me, my age and in their teens who tell me that the main message they get from their parents is ‘get into a good university and get a good job’. I want to cry.

Success is not measured by what university you go to, or if you go at all. Success is not about getting a highly paid job. Success is not about fitting into a mould that someone else has made for you. Success is about finding what makes you happy, what makes you tick, what makes you passionate and working hard to get there.

No child, teenager or adult should ever be made to feel that they have to make choices in life that they don’t want to but feel that they have to because that will please their parents.

The message we all should be getting in our lives is work hard and be happy. This is not a rehearsal. This is the only life we get and it makes me so angry that there are scores of teenagers in schools making decisions on GCSEs, A-levels or university degrees that they think they have to because their parents want them to. I’m afraid I just can’t understand why a child’s happiness and fulfilment in life isn’t more important that what university or what job.

I know that to my parents it didn’t matter one inch whether we were jugglers, biologists, drummers or anything else. What matters to them, and what should matter to everyone’s parents is that their children are happy, fulfilled and do their best and what they’ve chosen to do.