The First Full Time Model With Down's Syndrome

The first ever full time model with Down's Syndrome?  That's what we thought when Jamie was younger.  Just look at this picture of him as a toddler.  Isn't he the most adorable child ever?  I mean, I know I'm not exactly unbiased, but come on ... surely it's just a statement of fact that he was a beautiful little boy?  Surely he was destined to be modelling clothes for Debenhams within a few years, and appearing in television adverts for breakfast cereals?  

He was so photogenic, and loved putting on a coy little smile for the camera.
  
Look at this school photo from when he was six.  Don't you just want to pinch his cheeks?

Obviously this kid has a great future ahead of him parading up and down Paris catwalks, the face of Dolce & Gabbana, and the subject of a great deal of media interest?







Yes, I know some people reading this might think the idea of pushing your special needs child into the spotlight is cruel and exploitative, but to those people I say this - shut up!  He won't care about that if it gives us enough money to take him to Disneyland.

Well anyway, it was all going so well (by which I mean I had done absolutely nothing about it, but still thought it was a realistic option for the future) until recently.  For some reason, over the past year or so, Jamie has developed a rather annoying habit - instead of smiling for the camera, he has started sticking his tongue out instead.

These are more recent photos:

We did not buy his official school photo this year.   We were sent miniature proofs - about ten of them - all with his tongue out.  I can imagine the poor photographer pleading with him just to give a nice smile for a split second.  "Come on Jamie, please smile, this is my livelihood."

Why does he do it?  Because he knows it upsets us.  He thinks it's hilarious when we yell "put your tongue away" at him.  Well, it's going to backfire on him.  He won't be laughing when he finds out where we are going on holiday next year (hint - it's not Disneyland).

So that's it - modelling dream over...unless...unless there happens to be a modelling agency representative reading this who is desperately searching for a model for a photoshoot where a special needs child is sticking his tongue out to camera.  If so, please feel free to get in touch.  

Expecting Adam - a book review

Expecting Adam is the "true story" of a mother coming to terms with the fact that her son has Down's Syndrome.  I first read this book about ten years ago, shortly after my own son Jamie was born with Down's Syndrome.  It was bought for me by a well-meaning relative who was hoping that the book would make me feel better about Jamie's condition, and it almost did.

Alton Towers Duel

I am going to tell you a little story about our trip to Alton Towers amusement park a couple of years ago, but I think I should mention in advance that I do not come out of it looking good.

The Disability Living Allowance Form has killed my soul

Right, it's that time again.  I have to fill in the form to renew my disability living allowance.  Interestingly, I know filled the form in a few years ago, but I really cannot remember a thing about it.  It is as though I have wiped it from my mind for some reason.  Why would I do that?

Ah well, not to worry.  I'll make a start now, it should only take ten minutes or so.  Gosh, it's a big booklet though isn't it?  Maybe half an hour...

Toto the Hero - Movie Review

Toto the Hero is an excellent 1991 Belgian movie about the lives of Thomas, Alice (his sister), and Alfred (a neighbour).   It happens to have a minor character in it who has Down's Syndrome, but that is not the reason I want to recommend this fine film. It is a tragic but heartwarming tale of love, jealousy, murder, arson, incest, and shoplifting.

A world cinema classic.  No bull.

For many years (ever since enjoying the little-remembered French rom-com Romauld et Juliet at the Glastonbury festival) I have been an advocate of foreign language movies.  I am not saying that all foreign language movies are better than all movies in English, but I have been known to argue that if you are going to watch 50 movies made in any given year, then rather than choosing the top 50 movies in English you would be better off watching the best 40 movies from English-speaking countries, plus the best 10 movies from around the rest of the world.  In recent years this philosophy has led me to some excellent movie experiences like Koyla, The Orphanage, Hidden, and Let the Right One In. However, it has also backfired spectacularly many times, and I have found myself enduring art films that seem to be designed to annoy the viewer, such as Uzak, The Death of Mr Lazarescu, 2046, and The Science of Sleep (during which, with pleasing irony, I fell asleep).  Toto the Hero however, belongs firmly in the former category.  It is one of my favourite ever foreign language movies.

Lapland - a Rovaniemi Review

Since when did Santa come from Lapland?  Everyone knows he comes from the North Pole, so how did the Lapland tourist board manage to persuade us all that he actually lives in northern Finland?  Well, however they did it, my family were fooled, and in December 2011 I allowed myself to be talked into taking everyone there for a day trip, including 11 year old Jamie with Down's Syndrome.

We went on the Thomas Cook "Santa Sleigh Day" at Rovaniemi.  Here's how we got on.

Why is it called Down Syndrome?

So why is it called "Down Syndrome" (or possibly "Down's Syndrome" depending on whether you live in the USA or the UK)?
 

Well, I am sure you know the answer, dear reader, but a lot of people do not.  They have a vague idea that it is something to do with the word "down" - a negative word - perhaps something to do with the person's appearance, or maybe his/her intelligence or disposition.

No, it is actually this man's fault - Dr Down.  He first spotted the characteristics of the syndrome, and so it was named after him.  By all accounts he was a nice man; he supported women's rights and racial equality, which was unusual for a Victorian gentleman. It is just his name I have a problem with.  Why couldn't he have been called Dr Up, and then my son would have a condition called "Ups Syndrome", which is far more positive.  It actually sounds to me like quite a cool thing to have.  More appropriate too.  I think new parents would be pleased to find out their child had Ups Syndrome, and it would make those first few days far less traumatic.  All the other kids in the neighbourhood would hear about the kid with Ups Syndrome and be jealous.

"Mummy, why can't I have Up's Syndrome like that kid next door?"

 

The Worst Day

"Did you know he had Down's Syndrome before he was born?"

That's the first question that 80% of people ask us*. Perhaps they are curious as to whether or not we considered having a termination - that is, they want to know whether or not we had "chosen" the lifestyle. Or perhaps they just like to imagine the moment we found out, and want to get the details of the mental image just right.  Either way, they are nosey buggers who should not ask such personal questions.

Since it does seem to be a subject that interests people though, I have decided to tell you about it.  I have mentioned before that I want this blog to be a bit of fun - a celebration of our chaotic lives - but unfortunately this one is not going to be a fun story.  Let's get it out of the way quickly shall we?  The day they told me my son had Downs Syndrome was the worst day of my life, and even now, years later, the memory is not pleasant.  Stick with it though, and I will try and slip in something funny at the end. 

S & M

S & M - that's us - Steve and Meg.

If you have come to this page because you saw the title "S&M" and were expecting to read details of our interest in kinky sex, you are going to be disappointed (or possibly relieved).  I am sorry to have to tell you that we are not into sadism, or, for that matter,  masochism.  The closest we have ever come to either was the time that, during an amorous exchange, a cup of hot coffee fell from a hi-fi speaker next to the bed, dampening the mood somewhat, as well as causing mild scalding.  This incident did not create an interest in the juxtaposition of pain and pleasure, it just created a few blisters, and a stain on the mattress.

I suppose we could have called ourselves M&S, but here in the UK there is a well-know department store with that name already.  It is usually associated with middle-aged women's underwear - is that something we want to be associated with?  No.

S&M it is then.

Steve:
An Englishman living in a small town in the South West UK.
A financial mathematician by profession, but not as boring as you might presume.

Meg:
Steve's beautiful wife.
A nurse, currently working part time at a local school, but hoping one day to train as a midwife. 



Look!  There we are!  I'm not going to lie to you, it's an old photo.  It was taken BC.  Just look at how slim and good looking we both are.  Look at the air of confidence about us, the confidence that the future holds nothing but good things for us.  Ha!  Smug fools!  It serves you right.

Our son Jamie was born two years later, with Downs Syndrome.  He's adorable.  We love him dearly, but there have been, shall we say, difficulties.  Many difficulties.

We have decided to write this blog as a form of therapy more than anything else.  We are not really expecting many people to read it, but if they do, that's fine too.

We think there are enough websites and self help books out there that offer advice on coping mechanisms and how to claim benefits.  We're not a support group.  We're just ... oh, I don't know ... why not?