The Down’s Delusion

As I read Richard Dawkins apology for his remarks regarding Down’s syndrome/Abortion I could hear a sharp intake of breath through gritted teeth from the Down’s Syndrome community. I could then feel the eyes…. waiting for my (re)action.

I have been a great admirer of Prof. Dawkins for a few years now and It was with great sadness that I read his apology letter.

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My wife and I have a two year old daughter, Chiara, with Down’s. During the pregnancy we didn’t know anything of her condition but my wife and I always said that if we found out that either of our children had Down’s (Or any other condition) we wouldn’t opt for an abortion. I could tell you that having a child with Down’s is no different or how much joy she brings to us. I could go on for hours about how much we love her and the wonderful  dynamic she has added to our family. While all of the above are true and self evident I feel they miss the point slightly.

Prof. Dawkins remarked that “if your morality is based, as mine is, on a desire to increase the sum of happiness and reduce suffering, the decision to deliberately give birth to a Down baby, when you have the choice to abort it early in the pregnancy, might actually be immoral from the point of view of the child’s own welfare”

While I can understand Prof. Dawkins views I certainly do not agree with them.

Is it immoral to purposely give birth to a child with Down’s citing the child’s welfare as your reason? I would have to say no. You could go one further and ask…

Is it immoral to give birth to a child citing the child’s welfare as your reason? After all any child could grow up and be diagnosed with a range of conditions later in life. Autism, Multiple sclerosis, asthma, etc. Of course the answer is no. Having children is a risk, you don’t know what the future will bring.

With the advancement of medical science foetus’ can be diagnosed with a variety of conditions as well as being put in a high risk category for other conditions. Would someone opt for abortion for the latter? Sadly I feel some would. Termination before diagnosis. Execution before trial. Sounds very totalitarian doesn’t it? Something I know Prof. Dawkins is fervidly against.

Since having Chiara I can say that we are happy, as is she, and there is very little in the way of suffering. Except when she’s hungry and she turns into a right little moo cow. Yes I will have to care for her until the day I die… But the same applies to her sister and any future little Loves that may pop along for the ride. Parenting is job that’s 365 days a year, very few breaks, long hours and it lasts until the day you die… and the pay is shit! The parameters have shifted only slightly with extra Doctors appointments, physiotherapy and numerous classes. As for what happens to her after we’re gone… I guess we’ll have to just wait and see what life throws at her. But she will grow up in a stable, happy and loving environment and she will be given every opportunity to live an independent life.

And finally Prof. Dawkins I consider you a champion of the secular movement. Helping society to shed the cloak of religious dogma and bring the truly wonderful world of science and nature to the people. Bringing a shining light to the darkness. I truly hope that one day I can do the same for you… You’re welcome for tea anytime.

 

 

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Education, Education, Education

I hated school when I was a kid. From the second I stepped into Mrs Thrussell’s classroom at age 5 to the last afternoon when I walked out of secondary school having finished my final exam. I was free. I spent over a decade in various classrooms daydreaming about ways in which I could escape the monotony of school life. These ranged from a jet engine under my seat to blast through the school roof to bringing in a very big coat on a windy day, catching a gust and it carrying me home to my Transformers collection. The problem was I was never engaged. I never wanted to learn, at least not in a classroom, and I was pretty much allowed to coast through school without any real great academic success. My school reports ALL read the same.

 

Very bright, has great potential. He just needs to concentrate and stop daydreaming/chatting. 

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I can count on one hand the times I was truly excited about school:
In my second year of secondary school we learnt about The Great war and I couldn’t get enough of it and If I remember correctly I aced my exam, but decided to study Geography instead…TWAT.

In my fourth year as part of our science module we had to learn about astrophysics. This was more exciting and fascinating then anything I had ever learned. I was truly in awe  by it and what’s more I had a superb teacher, Mr Newbury. In fact all his science lessons were exceptional. This is a passion I still carry with me today.

That’s it. They were the only times I was actually excited about learning and I find it terribly upsetting. Firstly because I squandered an 11 year, free education when there are people in the world who receive none. But also because every single one of my teachers saw that I had great potential and I was left to slide away. Of course I’m not trying to blame anyone else but me, to this day I need a kick up the arse to get going. What’s also sad is I’m not the only one.

Everyday thousands of children begrudgingly trundle into school to endure six hours of boredom. And I don’t blame them. I don’t blame the children for feeling disengaged and I certainly don’t blame the teachers. What I do think is at fault is the system that both teacher and student have to endure.

The public education system was developed towards the end of the 19th century to meet the demands of the industrial revolution and it hasn’t really moved on since. Of course there has been an influx of lessons ranging from Japanese to Economics but the school system is still based on the same model from that of the late 19th century. A model that is based on group learning, the memorisation of dates, numbers and facts, standardised tests, the stopping and starting of lessons with bells and whistles, structured breaks, uniforms and desks lined in rows.

All children learn differently, adults too. Some work better in a group, some on their own. Some work better in the morning whilst others flourish in the afternoon.  Some are visual learners whilst others only need to listen to instructions to understand. So our schools need to be structured in a way that accommodates all the different ways we learn. A school that is open from 8.00am to 8.00pm where students have as much autonomy as the teachers. A school that doesn’t have children sitting in rows and being herded from class to class every hour like cattle. A school where a child can take a break whenever he or she feels the need to. A school where the emphasis on Music, Drama And Art is just as strong as it is on English, Maths and Science. A school where a student’s pathway can be devoid of the three Rs and will suit their needs. A true school of the future.

I think if we’re going to reform our school system, and we need to, then we need to take lessons from countries like Finland. Finland outstrips the UK in Reading, Maths and Science year after year. There are no tuition fees and compulsory education starts at age 7, so as not to interrupt childhood; and finishes at age 15. Early education focuses on life, respect towards others, and social attitudes. Classes are usually small, no more than twenty, and there are no standardised tests. The end of year exam usually consists of a verbal assessment. Children will learn two foreign languages and 4-11 periods a week are dedicated to arts and craft. Homework is kept to a minimum to enable students to participate in extracurricular activities. There are state subsidised music schools and for a minimal fee students can learn a musical instrument along with music theory. Reading for pleasure is also highly encouraged. Finland currently produces more children’s books than any other country and there are free school meals for anyone in full time education.

Teachers are selected from the top 10% of academics and all teachers must have a masters. Their salary reflects the importance of schooling children which is why competition for teaching jobs is fierce. They are given far more autonomy than their British counterparts and they are simply instructed to “Do what ever it takes”
There is no drop out rate and if a student does fall behind they receive one to one tuition and a brought back up to speed and it’s almost unheard of that they hold a student back a year.

It’s practically the mirror opposite of what we do the UK. Our current education secretary Michael Gove is in favour of putting more emphasis on tests rather than coursework, longer school days and getting back to the three Rs (Reading, writing and Arithmetic) There is no doubt that Maths, English and Science are important. But are they any more important than Music? or History? Certainly not. Especially if one wants to be a musician or an historian.

Children who are starting school this year will be retiring in 2083 and we need to ensure that they are as well rounded and as well educated as they can possibly be because we have no idea what the world will look like in 2020 let alone 2083.

I’m happy that I live in a country that has a public school system, it just needs updating. It needs to reflect 21st century life and it has to keep children engaged. It has to be an environment that children want to learn in and that teachers want to teach in. This isn’t going to happen if we keep pumping money into an outdated, victorian model. There is too much emphasis on getting a job and this isn’t the business of education; and too much pressure on children from teachers and parents asking “What are you going to do when you leave school”…..My answer? Whatever the fuck I want!!

Children need to be taught HOW to think not WHAT to think.

 

“When I was 5 years old, my mother always told me that happiness was the key to life. When I went to school, they asked me what I wanted to be when I grew up. I wrote down ‘happy’. They told me I didn’t understand the assignment, and I told them they didn’t understand life.”- John Lennon 

 

Milestones

Over the last two weeks our daughter, Chiara, has hit a milestone. A big one. She has learnt to go from lying down to sitting up. All by herself. While this may not seem like something to write about, to us and Chiara this is a huge achievement. Chiara is 15 months old and has Down’s syndrome. The first few months after her diagnosis were spent in denial..at least on my part. She fed exceptionally well from the breast and from the bottle, had good muscle tone and seemed acutely aware of her surroundings. I would constantly tell myself that maybe she didn’t have Down’s, maybe she was misdiagnosed. But since her first birthday we have noticed an increased delay in her development. This was hit home when I dropped Chiara and her elder sister, Amelia, off at my parents for the day. Their youngest cousin was there, who at six months, can feed herself and when I held her I could feel that she had a strong core. Nether of which I can say about Chiara, which fills me with a great sadness. While I’ll never pitch children against each other in terms of their achievements I couldn’t help but notice it. What’s more it’s a divide that will only increase as they get older.

After Chiara’s diagnosis both Marlo and I were plunged into a void. A void of unknown certainty, of unanswered questions and fear. While no parent knows what will become of their children the uncertainty is amplified when you have a child with Down’s, or any other behavioural/cognitive/genetic condition. I could not love my daughters any more if you paid me. My love for both of them grows exponentially each day with each new word, each new milestone and with each new demand. Although Chiara’s development will be delayed and she may not achieve even that which comes so easy to other children; Marlo and I have sworn that she will be granted every opportunity that is granted to all children. We want her to attend a mainstream school, have friends and to gain as much independence as is possible. We want her to grow into her own person.

While Marlo and I work tirelessly with Chiara none of it could be possible without the excellent support from the National Portage Association or Portage as they’re better known. They organise day trips out, provide valuable information for parents and host weekly groups for the children. The groups include:

Swimming
Physiotherapy
Sensory and cognitive development
Sign language
Speech and language therapy
Messy play

And that’s just the start. Just as important it also gives parents the chance to have their fears and uncertainties rolled up into little balls and thrown out the window. I can honestly say that Marlo and I wouldn’t be the parents we are to Chiara without the support and care we have received from Portage. The group is made up of staff and volunteers who all show unwavering love and affection for all the children. I can’t thank them enough for all they have done, directly and indirectly. I also can’t thank them enough for all they are yet to do. You make having a daughter with Down’s the joy it should be. Focusing on the positives and dealing with the negatives with a breathtaking confidence that puts both Marlo and myself at ease and it lets us get on with raising both our children. Thank you.

My biggest fear for Chiara is that she won’t be integrated into society and will suffer intolerance from the ignorant. So far I have been shown that I have little to worry about. Not only has Chiara been accepted into our loving family and is adored by her older sister she has also been accepted into another family . Both Amelia and Chiara visit a childminder, Kim, two times a week. Kim has two young boys aged four and eighteen months. I was informed that the younger of the two still can’t say mama yet but he can say Ra Ra, That’s baby for ‘Chiara’. So you could say that phase one of social integration is complete.

Neither of my children are expected to grow into my expectations. I do not want to live vicariously through them and I don’t ever want them to feel that they don’t have a choice. All I truly want is for them to be happy.

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A letter to my 13 year old self.

Tim,

Where do I begin.. I guess by asking how you are getting on with the SNES you got for your birthday? I don’t want to be the bearer of bad news, but…You don’t complete Super Mario Bros. 3.

I also wanted to say that you are fucking amazing, not enough people tell you that. I wanted to give you a few pointers, things to focus on and things to try. You will have to trust me and you will have to believe me when I say that this is for the best. I don’t want to tell you too much as you reading this letter has already disrupted the space time continuum.BACK-TO-THE-FUTURE-notes--007

1. Get rid of that awful dance music you’re currently listening to. You’re only listening to it because everyone at school listens to it and you’re trying to fit in. Below are a few albums that you should go and buy:
* Nirvana – Nevermind
* Pearl Jam – Ten
* Pearl Jam – Vs
* Oasis – Definitely Maybe (Should be out later this year)

* Jane’s Addiction – Nothing shocking
* Jane’s Addiction – Ritual de lo habitual
* Blind Melon – Blind Melon

These will get you started. It will take you a while before you fall in love with them, but stick with it. These are some of your favourite albums, you still listen to them to this day. I also suggest anything by Jimi Hendrix, The Beatles and Led Zeppelin.

2. Get a guitar, electric if possible. There is a store in Sandhurst called In tune music, they will help you out. Try to get a Stratocaster or a Telecaster. You have a penchant for music and this will give you a great head start. You’ll also need to find a teacher, again the music store can help you. As your birthday has just passed and Christmas in nearly a year away you will have to pull your finger out and do some work. I estimate you’ll need about £100. The half term holidays are next week so you can go to work with Dad. Clear up the yard, clean the vans, sweep the router room. There’s plenty to do.

3. Pay attention in school. This is a big one. You have the capacity to ace all your exams, I know because right now I’m re-taking GCSE English because we only got a C. I’m on course for an A and to be quite frank, it’s easy. I know you daydream a lot, this is not entirely your fault. You aren’t interested in learning because you are disengaged. I don’t know how I can help from where I am, but I would say speak to all your teachers. There are some great teachers there. Remember Mrs Lawson? You also have a love of science, you just don’t know it yet. Ask your science teachers to recommend some books on evolution and astro physics (planets). Speak to uncle Nigel and Dad about literature. George Orwell and Mark Twain are great places to start.

4. Don’t worry about not fitting in. Everyone has a place and there is a place for everyone. Everyone at your school is just as confused as you, even the teachers. Football isn’t your strong suit and you know it. Leave it for Steven and Russell. When you start to discover your musical abilities football will soon fade away and you’ll be much happier without it, trust me.

5. Speak to your Grandparents more. This is something I deeply regret. They have lived very rich and interesting lives and have a lot to offer the world.

6. Don’t worry about growing up too fast. Enjoy your childhood. Play outside more. Your imagination is one of the greatest tools you have, use it often.

7. Get yourself a deck of Bicycle cards and learn how to do a few tricks. Forget that crappy magic set we got for Christmas all those years ago. You’ll need a book, a good one. The Royal road to card magic is one of the best.

8. Ask more questions and question what you’re told.

9. Don’t be afraid to make mistakes. In fact I encourage it. We only learn when we make mistakes. So jump in with both feet.

10. This is the most important one. When ever life gets you down or you feel angry or sad. Remember that you are a talking ape living on a piece of rock travelling through an ever expanding universe. Alternatively try this…Close your eyes and imagine yourself flying up. You pass through the clouds, through our atmosphere and out into space. Look at our planet. Look at it’s vastness, look how it spins. Think of all the billions of people going about their day. What ever problems you may have, its not the end of the world. As a species we are quite insignificant.

Well that about covers it. I wish you all the best with your teenage years, they are truly amazing and you have some great times ahead. Oh if you could copy write a short story about a young wizard called Harry Potter who learns magic at a school called hogwarts and has two friends called Ron and Hermione, I’d really appreciate it. When you’re 23 or so you’ll see an advert for an American singer looking for a guitarist, make sure you go to it.

Best wishes

Tim aged 33