Oh brother

This was originally on the BBC Ouch! Website

There's a great scene in the film Afterlife, http://www.alisonpeebles.co.uk/afterlife.htm when the brother of the woman with Down's Syndrome, has to decide between a life living near his sister, or a fabulous career. But, what do I expect of Stan's brother? When we're older, or gone, will Harry feel like he HAS to look after Stan? I certainly don't expect him to. We want to do enough while we're still around to make Stan stand on his own feet, and to guarantee his care. I want his brother to have all the advantages in life that I've been lucky to have. Jane and I have travelled extensively. I want Harry to. It's got to be up to him. We certainly hope we've got things right so far. Not for us, those hippy books called something like "My brother flies on the back of the big red hen" which completely skirt around the issue and allude to a brother having a disability. From an early age, Harry's known that Stan has Down's Syndrome. When Stan was born, we asked Harry if he minded that he had a brother with Down's Syndrome. He said: "No, because now we're a family." Someone said to me that when he's a teenager, Harry may resent Stan. We shall see. It's a tricky one, and we'll have to play things cool. But THE number one person in Stan's life……….is his brother. That's all that matters.

An inspector calls

This was originally on the BBC Ouch! Website

Stan had a bad start back to school: He smacked his key worker in the face and came home with that look of: “What are YOU going to do about it”. His behaviour was challenging for all concerned, and it was worrying because we thought he’d suddenly become wild child. It turns out that Christmas and New Year had completely taken him out of his routine. Also there are lots of new kids in the nursery, and he was just staking his territory. A bad time to choose to act up, really, as the Ofsted inspectors were in town. We were frantic: Luckily, they went to the nursery later in the week, and my wife saw Stan on Thursday, leading an inspector by the hand, to sit down and sing a song. Hopefully they saw a great example of mainstream integration, rather than the beast that he’d become over Christmas. Look at his picture: Butter wouldn't melt in his mouth…..Stan does do a good line in smashing you in the face with a heavy plastic object, especially when he wakes up, runs in the room, and you don’t quite make it to consciousness. I’m sporting a bruise currently! He also stuck an ice-cream cone on my head recently which was like a devil’s horn. I can laugh about it…now. Behaviour is such an important issue, but, like everything else, we take each day as it comes and eventually he will learn it. It’s hard work and often soul-destroying. By the way, at the weekend, Stan caught a ball for the first time, used the mouse on the computer properly for the first time, and signed his first sentence. Quite often, acts of bad behaviour are followed by great moments of progress, leaving the parent in a state of confusion………..

A testing time

This was originally on the BBC Ouch! Website

On Saturday, a heavily pregnant woman gave Stan a really nice smile. This can be rare. I’ve noticed that some pregnant women can be a bit overwhelmed at the site of a boy with Down’s Syndrome. After all, they’re likely to have had some of the tests: “Oh my God, I do hope I don’t have one of THOSE!” But I don’t have negative feelings to anyone who stares and inwardly screams: Because it’s admission time. I saw a young child with DS about three months before Stan was born and had EXACTLY THE SAME THOUGHT. During pre-natal testing, the medical profession are far more interested in playing down the achievements that people with DS can make, and that needs to be challenged. The big change that is likely to come along is non-invasive success in determining whether a child has Down’s Syndrome. Look at this article http://www.technologyreview.com//wtr_16028,1,p1.htmlThere is a risk of miscarriage if a needle is placed inside the womb, and so, better tests that don’t involve this, are likely to become more popular. It would be nice if this site provided a link to pages that show how it isn’t necessarily a disaster to have a child with the extra chromosome. Who would dare say that this man shouldn’t have been born?http://www.sujeet.web.com/ By the way, the techie website was mentioned on a UK e mail list that Down’s parents use. One interesting comment: “It's odd, isn't it, the idea that our children may be endangered species?”

Do it again and again and again

 This was originally on the BBC Ouch! Website

As a family we’re really into age-appropriateness. I want Stan to watch things on the TV that are as close to his age – he’s nearly four – as possible. And actually, the same goes for me. At the age of 43 I could turn into “trendy dad” well, we've had the Black Eyed Peas album on in the car.
Well, specifically track one. Well, only track one. Kids like repetition. Anyway, it drove me to distraction. “Don’t play ‘Pump it’ EVER again”. Yet somehow it came on again, and again, and I started screaming: “Let me out. I’ll take my chances” Then I noticed an interesting thing. Stan knows all the words and was singing along. The lyrics sort of go: “Huh, huh, huuuuuhhhhhh” and he sang it all perfectly. This comes from DEEP repetition and is a timely reminder that, if I’m to be “the great Down’s dad”, I have to get into the repetition stuff: It’s a great way for Stan to learn. I’ll repeat that. Do it again and again and again and again until Stan gets it. It’s boring as all hell, but I have to realise that you don’t just get to do the fun stuff like running around the house causing havoc. By the way, I’ve just done some research on this band, and, tragically, they had a 2003 hit called “Let’s get retarded”. At least it gives me an excuse to break the CD that’s in the car…………………….

My own small battle of the sexes

This was originally on the BBC Ouch! Website

My own small battle of the sexes “I cried for about a year.” “Same here, well, for at least the first nine months.” Why are women so honest? These comments were made by my wife and a friend at a Christmas party at a family centre today, talking about when our DS kids were born. Whereas blokes kind of “cope”. For me, when Stan was born it became a bit of a “challenge” and I still sometimes treat it like some big blokey experiment (a long term one!). I mention this because I was recently interviewed by the Foundation for People with Learning Difficulties, who are researching the role of fathers of children with learning difficulties There is a suggestion that support for parents is often targeted at mothers and that fathers may find it difficult to ask for help. 

I found the interview rewarding as I’d never spoken of my feelings before to a stranger, for an hour and half….It was like therapy! But I won’t burden you here with what I said. (Typical bloke!)Certainly, most of Stanley’s key workers are women. That’s fine, he loves them. But he really loves the guy who’s his hearing-impaired teacher, because he’s a bloke. Stan runs up to men and hugs them and stays hugging them. Women may turn out to be teachers or nurses and may get him to do boring stuff. And so I worry that there isn’t the input for men that there could be. Some men will find it difficult to cope when their child is born with a learning difficulty. Danny Mardell, who I wrote about recently, admitted that he took solace in work at first. A lot of the decisions in Stan’s life are made by women and that’s fine because they are fine people. But, when he’s older, I’d like Stan to have a male role-model that isn’t just me, his brother or his uncle.

Down's Syndrome Baby Jesus

This was originally on the BBC Ouch! Website
 
OK, that'sit for 2005. The Wizard of Ouch has taken off his conical hat, put on his Santa hat, and given me Xmas off. Before I say farewell for the year, here's a snippet, as promised of a play written by Stan's eight-year-old neice, Eve, and to be performed on Xmas Eve (in our house). Now, it's important to make everything in Stan's life age-appropriate, but he is playing the part of the Down's Syndrome Baby Jesus because he is the closest in age to the real thing and well..........................it's only a play! Merry Chromosome! SCENE 1:THE LITTLE TOWN OF SHETLEHEM , SCOTLAND . Joseph: oh I hope I don't get a disabled child Mary: oh what was that dear? Joseph: oh nothing darling Mary: oh I'm giving birth in 5 minutes so bring me a cup of tea lad……… oh forget the tea I'm giving birth now!!!!!!!!!!!!!!!!!!! Joseph: oh I'll come when the baby's here Mary: oh your useless I'll just call a nice sensitive animal……oh Rudolph dear Rudolph: oh you silly moo I'm not the giving birth service, but what I can tell you is that we might need to go to the Giving Birth Planet because your son might need some medical help. Climb aboard!!!!!!!! (whooshing……..) Read the whole play http://www.evecornflake.blogspot.com/ Merry Xmas to all Ouch readers from Stan and family.

Nip/Tuck - Oh my God - I look like my Dad

This was originally on the BBC Ouch! Website

Blair plays Tommie Bolton, a young man, who goes to the doctors asking to look like his family. He tells them everyone else gets to look like the people they love, so why shouldn’t he? He says it isn’t his fault that he has Down syndrome. The new doctor in the series discourages the family, telling them that it would take $60,000 and 10 surgeries to do such a thing. Tommie's parents don't have enough money and ask if they do "pro-bono" or free work for deserving cases. The new doctor says that it's the same scenario as if a woman wants a boob job.However, Dr Troy is more sympathetic, feeling that the new doctor wasn't very helpful. Tommie's arrival spurs him into contacting his mother again because Tommie's family bonds are so strong.Tommie's brother and sister approach Dr Troy, and offer $15,000, asking him what he can do for them.Dr Troy suggests that, as the family all have the same prominent nose, Tommie should have a new "Bolton nose". Tommie goes under the knife and gets a new nose. He loves the outcome, and says: "Oh my God, I look like my Dad". His family are delighted with the new nose too.