What it's like to be the parent of a child with a learning disability. The blog was created in 2005 and discusses anything to do with Down Syndrome

Wednesday, 21 December 2005

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.

Tuesday, 20 December 2005

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.


Thursday, 1 December 2005

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.

Tuesday, 29 November 2005

If DS people ruled the world

This was originally on the BBC Ouch! Website

You are the boss of me now

I’ve noticed interesting research written by Dennis McGuire, PhD, of the Lutheran General Hospital in Illinois, USA. Dr McGuire asks: “What if people with Down Syndrome ruled the world”. http://www.nads.org/pages/ruletheworld.htm
He isn’t for a moment suggesting that Stan should run for PM (Although I do have high expectations!)
But this research highlights some of the qualities that people with DS have. If I could have been given this article on the day Stan was born, it would have helped greatly. Instead, we were told Stan had this “thing” that may as well have been described as “a nasty disease”, by a doctor who broke the news and who then walked out of the room and left us on our own. Thanks!
I really like the bit about how people would be refreshing and honest if DS people were in charge. Stan’s too young to show these qualities just yet, but all the evidence here suggests that it’s there in abundance with people with DS.
Dr McGuire says: “Art and music appreciation would be BIG.” This means a lot to me, as, last week, I was approached by the school’s music teacher who said that Stan has been progressing really well in the sessions, and has developed his own responses to the songs. It was an empowering moment.
What do you think of this research? It IS a bit huggy and schmaltzy and there is the point that people with DS are vulnerable so need to be cared for AND encouraged, not pitched into high office. But I like the fact that Dr McGuire has used this premise to express the range of things that DS people can achieve.

Monday, 28 November 2005

Eve's blog


This was originally on the BBC Ouch! Website


Hello. I am Stan’s cousin, Eve. I am 8 and I go to his school. I have given Stephen the weekend off and here is my blog: Saturday 26th November: Eve Harding and May Harding are sleeping at their auntie and uncle’s (mr and mrs palmer) because their mum and dad are in Sweden on holiday. Eve and may’s cousins (harry and Stanley palmer) are getting along very nicely. Stan (Stanley palmer) has got Down Syndrome and Eve, may and Harry are looking after him with love and care. Later on today Eve, may, Harry and Stan will be going swimming at Archway pool. WE THINK that Stan is doing very well in speaking (Makaton) and being a lovely member of the family. Stanley can now say car and house with help from Stephen and Jane Palmer. Eve, May, Harry and Stan are taking part in a play at new year. If you want to find more about the palmers and Stan log on to http://www.bbc.co.uk/ouch/lifefiles/dwtk/ Read more of my blog here http://evecornflake.blogspot.com/ Sunday 27th November: Eve and may Harding are still at Jane’s house and are settling in very nicely and are starting to feel that they live there. Eve has developed two blogs now, and on the last one eve talked about the palmer family. Eve, May and Harry go to an after school on Thursdays and Stan and Stephen always pick Harry up. Last Thursday the after school club had the tent out, but they didn’t Use the tent the proper way they wrapped them selves in it and the Head of after school club pulled it with the rest of after School club. Eve had a go with Stan on her knee and at the last minute stan jumped off it. If you want to ask questions or want to find out more palmers log on to http://www.bbc.co.uk/ouch/lifefiles/dwtk/

Thursday, 24 November 2005

Three things

This was originally on the BBC Ouch! Website

1. The Man with the Child in his Eyes

My wife is fuming at the messages left after blogs 1 and 2. Not because they aren’t heartfelt. We’re both delighted that what we’ve got to say strikes a chord. Thank you from both of us.No, the reason why my wife is downbeat about Down’s dad is that she thinks I’m soaking up this adoration as a “great dad“. When in fact, in reality, I left the living room in a mess yesterday, with toys scattered everywhere. It’s true. I just treat the house like a big playpen. Tonight I’m “cooking at long range” whilst writing this and I’m sure there’ll be some need to explain the mess in the kitchen later! I need to be TOLD what to do. If there is a really important meeting at school about Stan’s future, I need to be informed on at least five occasions so that I’ll turn up. The shopping list has to be complete so that I don’t stray off course and come home with inappropriate items. I suppose my love for the boys is the thing that gets me through unscathed, but it needs to be channelled!

2. Danny Mardell

If there’s one other dad that I really looked up to it was Danny. He died last week, of a heart attack. Danny was my age and Danny jnr was born with Down’s Syndrome in 1995. Danny snr used to stand up before white-collar boxing matches in the East End and lecture the crowd on learning difficulties…..talk about preaching to the unconverted. I’ve just listened back to an interview he did on the Jeremy Vine Radio 2 show in June. He was in to talk about his book, “Danny’s Challenge”. Interestingly, he was talking about “Down’s kids”, so Danny wasn’t getting the terminology right. But so what? He was a massive, and forceful, advocate for the rights of people with Down’s Syndrome. We’d like to send our condolences to his wife Carol, Danny jnr and the whole family.

3. Did they mean to say that?

As you can tell, I am more impressed with someone who actually DOES something than someone who gets the language correct. What REALLY gets me is the clichés that folks come out with in relation to Stan. It’s time for some platitudinal rectitude! So, here are my top “remarks that the person opening their gob could have rephrased”:“If it had to happen (having a DS child) I couldn’t think of a better couple for it to happen to”. Well, thanks. (ie “Phew, it wasn’t me!”)“Whereabouts on the SPECTRUM is he”. There IS no spectrum for Down’s Syndrome, Stan can do some things another DS kid can’t do and can’t do things another DS kid can do. I think they’re confusing this with Autistic Spectrum Disorder, because it’s got the word “spectrum” in it.“He’s been five rounds with Mike Tyson”. (after his heart op.) I didn’t know that Tyson did heart surgery too!“You’ve been on a roller-coaster of emotions”. Well, we HAVE, but it’s still a cliché.“Isn’t he happy?” Yes, but I want him to be a drummer in a band or a office worker. Your comments don’t include MY expectations for him.So, there you have it. At the end of the day, clichés are only being uttered because people are trying to be nice, but only time will tell if I calm down over this, and if you think you’ve heard the last of this, think again. Til next time. Raise a glass to the wonderful Danny Mardell. I will tonight. Steve.

Thursday, 17 November 2005

11 May 2002 - and a couple of heroes


This was originally on the BBC Ouch! Website


It's only me.
Stan's just seen his picture with me on the ouch site and signed "Dad". That's my boy. So, why the name Stanley? We all support Stoke City and he's named after Sir Stanley Matthews, who was seen by some as this country's greatest footballer. The 11th May 2002 was a really important day for me. Read why on the following, which was originally on the Stoke City Oatcake message board. This needs a translation for non-Stokies: We had come back from the dead against Cardiff in the semi-final of the 2nd Division playoffs in early May and now faced Brentford in the final at the Millenium stadium......


I was walking between the seats, slapping myself in the face. I didn't even care if people saw me. It was half time in the play off final. We were 2-0 up against Brentford, and Stoke had to win this match: it had become a symbol for whether my younger son would live or die. He was born a few months earlier, on 31st January, and just about the only thing that went right that day was that we decided to call him Stanley. So Stanley came into the world with a fiesty attitude and an extra chromosome. Stan's got Down Syndrome (DS), and guess what, many kids with DS have a congenital heart complaint. But Stan's needed an operation in Great Ormond Street. Several months later, Stan's date was set for 9th May, two days before the Cardiff play-off. We'd been told that there was a chance that the op may be cancelled, so I went and bought a ticket for the play-off final anyway. I figured that £30 was a good gamble, and didn't it just turn out that way. 

The op was postponed with a week to go.We were all devastated that we'd had to wait for the operation but delighted that we could go to Cardiff. Explain that emotion to his older brother! Before that, on 1st May, my little son, aged 3 months old, with his difficult breathing, lay asleep on me as all the action happened at Ninian Park. I remember when James O'Connor's equaliser went in, I was "watching" Radio Wales on Sky, my brother-in-law rang, speechless, giving out a monosylabic whine, it was almost a moment when, Stan's chest held to mine, I was, via James O'Connor, breathing life into my boy. I didn't realise it at the time, but it's perhaps one of the most intense moments of my life. See from 1'25" for the goal here. Stan had a new date, 20th May. So, off to Cardiff for the match.

The first half was a dream, and I "woke up" at half time with the realisation that Stan was going to survive if Brentford didn't beat us. In truth there was only one team that day, and Brentford heads were dropping early in the second half. Try telling me that, though. I have a vague recollection of Stoke fans singing with two minutes to go, but I still thought that Brentford were going to come back and score three. When the final whistle went, it was a religious moment. Wow. Stan had a chance. Job done. On to the hospital. (OK, before we left we danced on our seats to Status Quo's "Rocking all over the World") Stan had his op on 20th May, and the recovery went wrong, he nearly died and he had another operation on 30th May. Football helped me through this awful time.

The next day the World Cup started and Stan started to improve. So May 2002 was all about football, from 1st to 31st. And it was all about Stan. There's no doubt that medical advances mean that he survived when he wouldn't have done if he'd been born ten years earlier. We now have check ups once a year and he may need further surgery. At the moment, though, he's running around, signing instead of talking, and he's started at his brother's school in the nursery.Stan's surgeon was called Victor. Victor is, understandably, a complete hero to me. But so is James O'Connor. Because he scored the right goal at the right time and breathed life back into our beautiful Stanley. Sorry Brentford fans; we had to win that match. And I can't wait to tell Stan about 11th May 2002, one day.

Monday, 14 November 2005

First post


This was originally on the BBC Ouch! Website

I fell in love with Stanley in Homebase. The thing was, he wasn’t even there. It was 24 hours after he was born, and I’d spent that time wishing he HADN’T been born. Stan’s got Down’s Syndrome. My love for his brother was unconditional, from the moment I saw him. With Stan, it was just……..delayed for a day. Some people go into Homebase and think: “Oh, I must remember those plugs”. I thought: “My God, I’m in love with him”, because I suddenly realised that despite Stan’s disability, here was a little boy who needed a family. I must tell the manager. Maybe he'll give me free plugs for life! I can’t imagine why I had to pop into Homebase the day after the one of the most dramatic days of my life. I say “one of the most”, because ten days later, we were told Stan needed heart surgery. You see, with Down’s Syndrome, you often get cardio complaints as well. Now Stan is almost four, goes to the nursery attached to his brother’s school and will be included in Reception, school uniform and everything, in September 2006. He’s just had his school photo taken with his brother, a big moment for us because in 2002, he nearly died due to the heart problems. We want Stan to be treated as normally as possible. This is a brand new challenge for me because I’ve spent most of my life trying to be different. At university I’d walk around in ripped jacket, as a symbol of my individuality. (OK, perhaps I shouldn’t have bothered!) These days, we would rather not draw attention to ourselves. We get stared at enough out in public, or people say: “Isn’t he cuddly and funny?” Well, he IS. But he’s also: Telling me he loves me in sign language, stealing items from the kitchen and hiding them in impossible-to-find places, making great progress with his key worker and developing friendships with his schoolmates. I’m expecting him to do more than to be the “happy child”: I want him to drive a car, learn a foreign language, play the Glastonbury festival……If my expectations are shot to pieces, it’s only me that gets hurts. That’s not going to stop me having massive hopes for his future. Welcome to my blog. The Wizard of Ouch has asked me to write it, from the viewpoint of a father with a child with a disability. Do let me know what you think. Steve

Thursday, 10 November 2005

Stan's biog

This was originally on the BBC Ouch! Website
Stan was born on 31st January 2002. He was THE child to be born that day with Down’s Syndrome. (There’s one born every day, apparently. About 350 a year). He had two separate heart surgeries at Great Ormond Street in London when he was two-and-a-half years old. He survived that and now he’s included in his brother’s mainstream school in the nursery. I’m Stan’s Dad and I’m dead proud of him. When the Wizard of Ouch asked me to do this blog, I jumped at the chance. I have spoken about Stan before on Ouchhttp://www.bbc.co.uk/ouch/writers/stevepalmer/and on the radio. I’ve been interviewed on Radio 4’s the World Tonight and Five Live. The last time I was on radio was with Vanessa Feltz on BBC London 94.9fm, in response to the news story that a woman who killed her “Down’s Son” (as the papers said) did not go to prison. I’ve really enjoyed these occasions, as it’s an opportunity to say that I expect Stan to drive a car, get a job, get married, and move into his own accommodation. If my expectations are too high, it’s only my feelings that can get hurt when Stan doesn’t fulfil his potential. Poor old me! I’ll take the risk! So, Stan is in nursery and next September, will be in school uniform. He uses Makaton sign language and loves “Something Special” with Justin Fletcher on the CBBC channel. The idea is that he can use his hands to express himself, then move on to the spoken word when ready. He’s already using a combination of signs and words. He’s getting on really well with his class mates. The other day, my wife picked Stan up to take him to his speak-and-language session. One of the kids said: “Where’s he going?” My wife said: “To speech session.” The little boy said: “But he doesn’t need it…he uses his hands to speak.” Stan’s part of a loving and close family, with brother, cousins, and three grandparents. It’s really important that we go out as a family and eat out, mainly because it’s a fantastic thing to do, but also because it’s where he’s learning a lot of social skills. I’m no Down’s Syndrome guru. When Craig won Big Brother in 2000, I wondered why he gave the prize money to a friend, who was a woman who had Down’s Syndrome and needed heart surgery. I remember thinking that I would have kept the money myself. What an awful thought. It’s just that having Stan has pointed me in a certain direction. It’s not a direction I may have chosen, in all honesty. But I’m on the boat and headed that way.