If You Go Down to the Woods Today.

 
What’s a chap like Freddie to do on the first sunny day of Spring?

  
     Go scrambling about in Apedale Country Park with Daddy, looking for some adventurous, grubby, boy fun. They went on a ‘bear hunt’ in and out of the trees, scrambled up muddy banks (and one old slag heap – basically an abandoned pile of coal spoil with weeds growing out of it), and slid down them. Freddie had his first Elementary Tree Climbing lesson.

 He had such so much fun that he came home in just his pants – always a benchmark of time well misspent! (his clothes were so muddy Daddy had to strip him off on the muck-mat in the boot of the car).

  

     You know a boy’s had a good day when his bath water looks like oxtail soup!

  

Shame on you, Sloppy Journalists …

Once again ignorance and sloppy journalism rears its ugly head. Mail Online journalist Ekin Karasin published an article ‘Village of the Damned’ in which she references Down’s Syndrome throughout. It is debatable whether more than one of the people pictures in the piece actually have Down’s, and if they do, they are not ‘suffering’ from it, but from neglect and ignorance. Every ‘fact’ this tabloid hack presents about Down’s is completely inaccurate, she also mistakenly conflates it with another, completely different condition which she refers to only by the derogatory descriptor ‘Kampung Idiot’. She has clearly done no research at all. The Press bears great responsibility, because the language they employ, and the emphases they place, shape the public perception of issues and events, including how we view, and react to, disabled people. Rarely do they live up to this responsibility, but by their use of negatively-nuanced language, and their tolerance of inaccuracy they perpetuate negative and damaging stereotypes of disability. That is why the work of my fellow bloggers is so important- we know the truth and we tell it. That is why I am asking you to read us, and share us widely: to give a voice to those the Press drown out with their ignorant blather, and to try to make the world a more accepting place for people like my son. Thank you.

It’s WDSD16 – So, What am I saying? #QualityofLife

On the run-up to World Down Syndrome Day I’ve been sharing photos on the theme of quality of life. Why?

I think often the first and biggest worry for any parent when they receive the diagnosis is: ‘What quality of life can this child possibly have?’ ‘What quality of life can we have as a family?’ It’s something that ‘others’- be they healthcare professionals, family, friends, or the general population – can be very pessimistic about. But dig around a bit, take the time to find the opinions of those who have actual, personal experience of living with a person with Down’s, and you will uncover a very different story.

 

Hi – I’m Freddie, and this is my family.

Sadly, this is something you have far less opportunity to do if you receive the diagnosis prenatally. But go out into town with a child with Down’s, and the opinions will come to you – or at least that was my experience. Once Freddie was old enough to sit up in a pushchair and make eye contact the most incredible thing began to happen – the hitherto invisible ‘Down’s Syndrome community’ suddenly became visible and vocal. People stopped us in the street, came up to us in shops, and chatted to us in cafes, all eager to welcome us as one of their own, and share reminiscences of beloved family members. One lady said to me: ‘my son is nearly fifty now, and I have had a wonderful life.’ All these encounters were positive and uplifting. I began to wonder if I’d skewed them in my head to make them that way, blinded by the bright side. But then I came across some research that showed the families of those with DS were more positive than the general population; there was a lower incidence of divorce among couples who had a child with it.

 

Heres me doing stuff by myself.

Surely this could only be because these people enjoyed good ‘quality of life’?

What exactly constitutes good quality of life? A Paediatrician once said to me: ‘I have this one patient with no independent mobility. You might think that they had no quality of life, but if you could see them lying on a mat listening to music and laughing, you wouldn’t say that. Remember – they’ve never experienced any other way of being.’ Quality of life is subjective, and that makes it a difficult thing to pin down. 

iI was obviously suffering terribly the day the paediatrician examined me … (not).

There are a few things, though, that I think we would all agree are pretty fundamental to life quality regardless of a person’s circumstances. These are the things that impact on one’s emotional or psychological welfare in some way. You know the old saying: ‘Money can’t buy you happiness, but it can allow you to be miserable in comfort’. This is not an exhaustive list, but here are the ones that sprang to my mind:

The ability to form strong relationships, and through them, a good support network. People with Down’s Syndrome often excel at this, because not only do they have a strong drive to interact with others, but also tend to have good emotional awareness (emotional intelligence, I like to call it). This is an area where some ‘intellectual’ or ‘academic’ folk struggle. No wonder our families tend to stay together.

Partners in crime

Partners in crime

Doing things for yourself is another. The majority of people with DS typically have only mild to moderate intellectual impairment or learning difficulties. They can manage self-care routines, make meaningful choices, read and write, and are more than capable of educational achievement, and can hold down a job. Many achieve a good level of independence given the opportunity. This coupled with their ability to form strong relationships mean that romantic attachments and even marriage are increasingly a feature of life for those with DS.

Me at Buxton Opera House, watching 'Room on the Broom'.

Me at Buxton Opera House, watching ‘Room on the Broom’.

Keeping busy is another- children with DS can join Scouts and Guides, take dance classes, swimming or riding lessons, football coaching, and do pretty much anything a typical kid can do. Adults, too, pursue their own interests, or those they share with family. The notion of a person with learning difficulties who is content to stare at four walls all day, and capable of nothing more, is inaccurate and pernicious. We’re all better off, without exception, when mentally stimulated and gainfully occupied.

It ain't half hot, mum!

It ain’t half hot, mum!

Joining in with family life, with community, and all their rituals and celebrations, having a break from routine, good food, good friends, education, health – many people with DS enjoy good health and are fully ‘able-bodied’; many, if not most, of the physical problems associated with it, such as heart defects, are treatable – all these little components of quality of life are not adversely affected by Down’s Syndrome, for the person themselves or their families. Dare I say it, in some ways our lives have been enhanced. We have been pushed in directions we might not otherwise have taken. We live outside the box (which was crowded and very same-y), and play ‘Australian-rules Parenting’. We have a different perspective, a thousand little reasons for new joy have crept in. The world has carried on turning around us. Life has not stopped since Freddie came along – Daddy became a graduate when Freddie was four. Mummy should graduate this summer. Big sister still goes to guides and is off to an international camp this summer. We still go on holiday; Freddie comes with us to museums, restaurants, parks, and events; on city-breaks and to the seaside. Sometimes he is better behaved than the typical kids (and sometimes he isn’t), he, and we, exist in the weave of life’s rich pattern. Some days we are happy, some days less so, but always, always, we are contented. Surely that is what is meant by ‘quality of life’?

The future's so bright I gotta wear shades! Please note: this is a meta-picture - a photo of me taking a photo of me.

The future’s so bright I gotta wear shades! Please note: this is a meta-picture – a photo of me taking a photo of me.

‘Lots of Socks’ Gallery.

Here’s my ‘Lots of Socks’ gallery for World Down Syndrome Day. What do your socks say about you?

 

I am the Goddess of odd socks. They go into the laundry in perfect pairs and come out as odd singletons. What happens to the others? Are they having a swingers party down behind the washing machine?

 
 

An attractive, respectable exterior, with an exotic underbelly.


 

Has a spotty bottom.

   

All heart, but fights like a stripy tiger when cornered.

  

Wishes every day could be Friday.

  
 

Is the bees knees.


 

Always wins the three-legged race.

   

Is obssessed with Guinness and Blackcurrant.


 

The force is strong in this one – an Imperial sock trooper.


 

All heart, almost right down to the toes.

   

Indecisive – couldn’t choose between socks or gloves.


Can’t get enough of playing Twister.

 
 

Is run off their feet.


 

Just has to be a little bit different.

  
   

Being Busy: #QualityofLife 9

I haven’t posted any #qualityoflife pictures for a few days because I’ve been very busy with uni coursework – final deadlines are looming. Which brings me to today’s post: Being Busy …  

Being busy may not be on everyone’s good quality of life list, but it’s got to be better than just sitting staring at the walls, which in many people’s imagination is all that those who have learning difficulties are capable of doing. Indeed, once upon a time it is pretty much what used to happen. There is probably a significant correlation between the rise in life expectancy in DS and the move away from institutionalisation, and towards people remaining within loving families, and being given opportunities for education, enrichment and meaningful occupation. Freddie loves to occupied. If he isn’t, he gets bored and then he gets into mischief. In Freddie’s case the devil makes work for idle hands and an idle mind. Sadly in all too many cases, in the past, they just withered away.

Catching a break: #QualityofLife 7

Having a break from the daily grind – whether it’s a day trip at the weekend, or a week or two on holiday – is something many of us feel is an important factor in good #qualityoflife.     

     It’s something that we enjoyed before Freddie came along, and it’s something we’ve continued to enjoy since. He’s generally pretty chilled out on a flight so long as he’s occupied, and despite his pale blonde hair and blue eyes, sofar he’s coped with heat.

     When a baby is first diagnosed with Down’s Syndrome, the parents are often given a copy of an article entitled: ‘Welcome to Holland’. It compares finding out your child has DS to boarding a flight for a trip to Italy, that you’ve been planning for years, only to be told that you will be going to Holland instead. It reassures the parents that, though Holland’s charms are different to those of Italy, they are charms nonetheless. Before Freddie was born, those who flattered themselves that they were in the know about DS, made out we wouldn’t even get as far as Holland – we’d find ourselves in Jaywick on a wet Monday afternoon. 

We didn’t end up in Jaywick, or in Holland. We’re in Italy after all. Not perhaps the bustling, cosmopolitan streets of Rome, or among the chic boutiques of Milan: we’re out in the country. The food tastes just as good, the sun is just as warm, and we can still enjoy a glass of red wine out on the terrace; the pace of life is a little slower, that’s all. But it gives us time to appreciate the vineyards and olive groves, and the shimmering summer air.