Steve Palmer's blog about his son Stanley - who has Down's Syndrome - & the extended family. All about Down Syndrome and learning disability.

Thursday, 7 September 2006

Starting school

This was originally on the BBC Ouch! Website

He's just started longer the nursery I was writing about before. But now he's going....with the uniform! .He's included in his brother's and cousin's primary school. The kids who start in reception get let in gradually - he's staying for just the mornings until October, at which point he becomes a full time pupil. This is a world away from the prognosis we were given on the day he was born: That he may not amount to much. Our boys and their cousins are now at the same school and we are proud parents. When Stan was born, I felt that a lot of the magic of birth was taken from me. On his first day in school proper, I got a bit of that back.

Monday, 27 February 2006

Down with Down's Dad

This was originally on the BBC Ouch! Website

Down with Down's Dad I'm not at all happy at the moment. This, despite some tremendous things going on in Stan's life: On Friday: He sat through birthday assembly and then went to the front, and blew out all his candles in the presence of the entire infant school. On Saturday: He sat through a film – Chicken Little – without getting out of his seat and getting bored. On Sunday: He did all his sound cards and matching games perfectly So why is Down's dad down? When things are going quietly and well, sometimes you can't help but think about other stuff. It's not the Down's, it's his heart. I was playing football on Friday night, I was in goal and it suddenly hit me (once again) that Stan's heart is held together, we've got an appointment in March to get it checked, it leaks and he will need another operation. This may be tomorrow or when he's 20. It's just that, whatever happens, his life expectancy won't be that of a typical child, and that, as a parent, is an incredibly hard thing to take on board. Why did this happen to me when I was playing football, on my night "off" being a dad? I'll cheer up next time, because, after all, while I was feeling sorry for myself, Stan was doing some wonderful things.

Sunday, 26 February 2006

Athletics for all

This was originally on the BBC Ouch! Website

Stan will be ten in the year 2012, when my town hosts the Olympics. So I'm not expecting him to take part. (His brother, on the other hand, is training to win a gold in the archery. Bullseye)
I mention this because I was really upset in 2003 when the Wizard of Ouch first told me about the banning of people from Learning Difficulties from the Paralympics. They missed out in Athens a year later, but were readmitted in 2005. It all happened because a Spanish journalist infiltrated his country's basketball team at an LD event in Sydney 2000. The result? ALL athletes with LD's were banned by the International Paralympic Committee (IPC)
I see it like this: Last weekend, the Liverpool goalkeeper, Jose Reina, accused Chelsea striker, Arjen Robben, of play-acting to get him sent off.
Now, if the IPC was given the task of punishing Robben (if guilty), perhaps Chelsea would be banned from all competitions for the rest of the season. It sounds ridiculous, doesn't it? But the organisations that head up LD athletics had to go through a stringent re-admission procedure, and, to their credit, they did it. I'm looking forward to seeing LD athletes playing a major part in the 2012 Olympics in London.
After all, look at the rewards

Wednesday, 15 February 2006

Teacher knows best

This was originally on the BBC Ouch! Website

This time, I hand over to Stan's support worker at school nursery, Tanit.

As Stanley’s learning support assistant, working 1:1 on a daily basis with four year old Stan, I thought I would aid Steve in with his blog by describing my experience of working in the nursery with Stan and his integration into mainstream school as this situation has been a learning curve for both Stan and myself.I have been working with Stan since September 2005 and I could not have wished for a more loving and special child to work with. When I first learnt about Stanley and his previous medical battle with his severe heart condition I must admit, I wasn’t sure of what to expect. However, when I first met Stan I was presented with an extemely confident, vibrant young child full of energy and love. It was magical and from that moment onwards I was so looking forwards to this new challenge and learning experience.

Everyday spent in the nursery with Stanley is just so rewarding and its amazing how this little child who professionals predicted would do so very little has the ability to walk into a room and light up the lives of others. Stan has the ability to melt anybody’s heart with the glint of cheekiness that he carries in his eyes and the way he guiltily smiles at you and cuddles you when you are trying to teach him right from wrong. He makes it almost an impossible task!There are many things Stan finds difficult on a day to day basis in the nursery but he is such a determined young boy that he perseveres with everything no matter how hard the challenge. Due to his poor muscle tone, trying to ride a bicycle and trying to produce some of the many signs he uses are just two examples of some of the daily activities Stan struggles with. Stan’s Down’s makes some daily tasks quite difficult for him but nothing stops him and he attempts everything irrelevant of whether he succeeds or not.

A lot of people have many preconceptions about children with down syndrome, the main one being that these children aren’t capable of much and that all they do is cuddle everyone all the time. However, the reality is very different. Yes, Stan is definately a very affectionate child who will give all members of staff in the nursery hugs and kisses throughout the day but he is just like any other four year old we have in the nursery. Stan likes to do what he likes to do, he will through toys around the nursery and will throw a temper tantrum when he doesn’t get his own way just like any of the other children.

If you were to ask me if I think Stanley attending a mainstream school has been beneficial to him I’d say yes. Stanley attending a mainstream school means that he accesses the national curriculum in the same way the other children do and that his disability does not preclude him from being just like any other four year old. He gets to paint with his friends, sing with his friends, play with the water and the sand and even though Stan’s day can sometimes be slightly different eg. by attending speech therapy, he is treated with the same respect and in the same manner as every other child that attends the nursery. Stan has no inhibitions whatsoever, he lives for the moment and lives everyday to the maximum.In contrast? Again, if you were to ask me if I think Stanley attending a mainstream school has been beneficial to the school I’d say yes everytime. Stanley joining our nursery has meant that we have all had to receive training on Down Syndrome and the methods for teaching children such as Stan. In addition to this we have all had to undertake training in makaton as Stan is so skilled with his signing for a child so young he would put most professionals in the education system to shame. I feel that all of the staff and the children that will progress with Stan through the school will have the ability to learn a lot.In summary to this blog I would just like to second Steve’s invitation to all of the medical professionals who predicted the very least for Stan to come and visit him in school and see how much this very special child has achieved.

We have all only been working with Stan since September and yet there is already clear evidence of the huge progress he has made in this short space of time. I am so looking forwards to continuing working with Stan and thanks to his extremely supportive family and the fantastic team that work with him in his nursery and the future staff members that will work with him I know Stan is destined to achieve a lot.

Tuesday, 14 February 2006

Last OUCH blog - Valentine's day 2006

This was originally on the BBC Ouch! Website

Valentine's day memories It's time to thank the Wizard of Ouch and his fine team, for inviting me do this blog, which comes to an end today. Thanks to anyone who read it, and to those kind enough to leave comments. I understand if you've had your fill.

Today, Jane and I were talking about things that happened to us four years ago. It's about this time in Feb 02 that we found out about Stan's heart. The fact that we were able to have this conversation today shows how far we've moved on. Having a disabled child can put your marriage under immense strain, and it's not all been a bed of roses. But, this Valentine's day we're able to look back, and say that we've survived, and we're stronger. Last week Stan and I had our hair cut. The barbers was quite empty, so two guys cut our hair at the same time, different chairs. Stan kept waving over, and it was a dad-and-son bonding moment. Just like millions of such moments all over the world every day, and just like moments I have with Harry. Yes, Stan needs extra help with some things, yes he's disabled, but he's also my son, and in the barbers, it felt like it more than ever.

Friday, 10 February 2006

Happy birthday Stan

This was originally on the BBC Ouch! Website

Happy birthday my little man. Four today. Here he is with his cousin and uncle.
We celebrated at the weekend, by going over to my sister's. Interesting event on the way……We were stuck in traffic by a bus stop. A family of four looked at us and the Dad whispered something to his wife. Gosh, I wonder what they said? Then all of them stared. A lot. Anyway, like clockwork, as though we'd rehearsed, we all swung into action. We hadn't practiced this, but I leant forward and STARED BACK. So did Jane, so did Harry. We were there for a painful twenty seconds, before we moved off. Just as we did so, Stan waved. He's SO forgiving.
I don't think those people will ever stare at anything again. Well, we live in hope………
Whilst we waited in the traffic jam, I was studying Stan's blue badge. It's got an expiry date. What's all that about? It runs out in October 2008. Either this is some administrative necessity, or they are confident of finding a cure by then. I do hope they let us know if they do.

Wednesday, 25 January 2006

'He was in fact a Mongol'. Letter from 1966

This was originally on the BBC Ouch! Website - it's a blog about a letter written in 1966. Followed by the letter itself, in full.
Terry Billinghurst 
Bristol, 1966: Letter by Mrs Elsie Billinghurst. "The Doctor told me that Terry would not be like other babies. He would be very difficult to feed. He would be very backward in walking and talking, and would never be able to read or write. He was in fact, a Mongol." 

Terry Billinghurst was born in 1937: Not exactly the best time to arrive on the planet. Added to all the stress of the build-up to war in Europe, Mr and Mrs Billinghurst had to cope with the stigma of having a baby with Down's Syndrome. Of course it wasn't called that then, and if you read the entire account, below you will no doubt struggle with some of the language. But it's a fascinating insight into life in Bristol in the war years and beyond. My mum was evacuated in the war: Were "mentally retarded" children evacuated? Certainly, Elsie mentions the bombing of Bristol and Terry was present. 

Your heart breaks when you consider how harshly she was treated by her neighbours in Bristol. Also, you wonder how she can still believe, in 1966, that a fall down stairs led to Terry being born disabled. It's only when she met up with a group of parents who had children with learning difficulties (Bristol and District Society for Mentally Handicapped Children) that she started feeling better about life, and realising that she and her husband were in the same boat as others. 

Until then, they thought they were the only ones. Reading it, you have wonder if Terry was the exception: He was not "taken by the authorities" but brought up in a loving, if well-disciplined home. How many parents of typical children can today boast that their kids were out of nappies in 18 months! Not bad for a kid that shouldn't amount to much...Elsie refused not to love her son: Read beyond the words and feel the love.

The Down’s Syndrome Association UK have come into possession of an account written in 1966 by Mrs Elsie Billinghurst of Bristol, about bringing up her son Terry. Terry had Down’s Syndrome and was born in 1937.Thanks to Stuart Mills – information officer at the DSA, and to Barkan Woodward solicitors of Bristol, who passed the letter on when a relative died and bequeathed money to the DSA in their will. 

The letter was found amongst this person’s possessions. Barkan Woodward have kindly agreed that I can reproduce the letter and picture.Elsie died aged 90, her husband died in 1976. Terry Billinghurst lived to the age of 46, and died in 1983.

Here's the letter, in full. 

Terry Billinghurst

The following is an account of my experience in caring for my Mongol son over a period of twenty-nine years, and it is written in the hope that it will be of some help to other mothers ofMongol children.My husband Ralph and I were married in 1935 and my father bought us a new house, and we had sufficient money to furnish four rooms. Whilst money was short we were so happy that that did not seem to matter. We had one another and that was just wonderful. During the early part of our married life we were out with Ralph’s brother and sister in law, and their little son came up and caught hold of my husband’s hand to be taken for a walk. It was then that I thought what a good father he would be when we had a child of our own, and I longed for that day to come along. At that time it was of course quite out of the question as we could only just manage on Ralph’s wages to buy food, meet the usual bills and live a very simple life. Our bank balance was in the region of £50-0-0 and that we were keeping for a rainy day. It was not to be touched except in a real emergency.

However the day came when out of the blue, Ralph came home to say that he had had a small increase in salary. What wonderful news. At last we felt that we could have our long waited for baby. We saved hard and decided to have a quiet and inexpensive holiday first, and it was during that holiday that I became pregnant. Before the week was out I was making bootees and vests. I was so thrilled. I remember both of us on our knees praying to God to send us a normal child. It did not occur to me to ask for a brilliant baby. I was so ordinary. How could I think for one moment that he/she would be more brainy than me?When I had been pregnant for three months I was home alone when I fell from top to bottom of the stairs. I was badly bruised but apart from that and a little sickness I did not feel any after effects and soon forgot the whole incident. I have since however wondered if that fall could have caused Terry to be handicapped.On April 22nd, 1937 I started labour but Terry was not born until April 25th at 10-30p.m. It was a difficult confinement and how glad I was when it was all over.

I felt so frightened. I wondered what effect the difficult confinement might have on my baby. It must be remembered that there was no Ante-Natal instruction in those days such as there is today. I would have loved a daughter but it did not matter when my son was eventually put into my arms, although he was such a little scrap and not a bit like I thought he would be. Even the skin hung on his fingers and he was so long coming into this world that all the skin rubbed off cheeks, and his tiny head was twice as long as it should have been. He was only 6lbs. born and when I came out of hospital his weight had dropped to 5lb.4 ozs. It seemed so difficult for him to feed that the Sister warned me that I might not save him.I thought “just you let me get him home. I’ll soon get him to feed.” I realized however the task that lay ahead of me. Looking back I wonder how I had so much patience given to me. It used to take me all day to feed him.

First I had to pump off my milk and then it would take me an hour to get him to take 3 ozs, and by the time I had changed him I would have to start pumping off the milk again. And so the days would go by.I shall never forget the day when I took him to the Post-Natal clinic for the first time. I well remember the Doctor looking at him and I saw her face drop. Terry was then only a month old and somehow I felt that there was something wrong, but I did not know what it was. I kept thinking that he looked different to other babies but put it down to the fact that, as he was such a long time being born, it was bound to make a difference. I made up my mind however that the next time I took him to the clinic I would ask outright. Better to face facts than to worry, but I little knew what the answer would be to my question.

The Doctor told me that Terry would not be like other babies. He would be very difficult to feed. (Didn’t I always know this). He would be very backward in walking and talking, and would never be able to read or write. He was in fact, a Mongol.That day was again one that I shall never forget. I still go cold when I think of that dreadful time. It seemed as though my blood went to water and my head went just like ice. I wished that I could cry but the tears would not come. What could I do? Why had this happened to me? What would the neighbours say? What would our families think? How could I tell anyone that our dear son was a Mongol? Would the authorities take him away from me? We so loved him and could not part with him.Having lost my mother when I was a little girl I went straight to my father from the hospital clinic knowing that he would guide and advise me. I cannot remember the journey from the hospital to his house. I did not see a soul yet I must passed dozens of people that I knew.

It was so difficult to tell my father and my step-mother that Terry was a Mongol, and would never be like other children. I felt so stunned, my world having crumbled that it was almost impossible to get the words out. Having eventually managed to break the bad news to them, my father said “My dear, live for today and let tomorrow look after itself”. This I feel in the light of experience since then is very sound advice for all mothers who find that they, too, have a mentally retarded child. Take each day as it comes and do not worry too much about the days that are to follow.Even amidst the grief there was an incident that did not strike me at the time as being humorous, although when I recall it now I can see the funny side. My step-mother was crying and said “And she keeps him so nice too.”When Ralph came home that evening he just would not believe the bad news and decided that we should see a specialist and hear what he had to say. Well, we did see one and he confirmed the doctor’s report. Somehow or other, we still could not accept the verdict and felt that both must be wrong.

We reasoned like this. What had either of us done to deserve this terrible blow? No one we knew had a child like ours.Supporting the old saying “New house, New baby” about seven of our neighbours in the avenue had babies about the same time and the mothers used to exchange news about their offspring. “My baby has a tooth”. “Mind can stand up”. “Mine is sitting up”. “Mine said dada today”. And so on. Terry however just layed in his pram. He still had not made any progress. I therefore decided to tell my favourite neighbour that Terry was mentally retarded and that it would be a long time before he could catch up with the others. This turned out to be a big mistake. Twenty-nine years ago it was not accepted that it could happen naturally to anyone. It was then regarded as a stigma on the parents. The consequence was that I was dropped by most of the other mothers. However, one, Mrs Griffen, a schoolteacher, became a wonderful friend and still is after twenty-nine years. One of the mothers made it her business to try and persuade the others not to have anything to do with me as their babies would pick up my baby’s bad habits.

Dear little Terry was then only three months old. Later over the years we have made many firm friends who had accepted him completely. This, as you can easily appreciate, has made such a difference to our lives.This incident that hurt me so very much, was also a challenge and I was determined, there and then, that even if he was not able to do all the things that normal children were able to do, at least he could be taught to be well mannered and well behaved. My husband and I therefore, trained him to be obedient and we never allowed him to form bad habits. Somehow he would respond quite readily to gentleness and kindness, although it was mixed with the necessary firmness. He would do anything to please us, bless him. He was so lovable. I was proud to be able to say that he was pot trained at eighteen months and clean day and night at two years.As is usual with most Mongols Terry has a marvelous sense of humour. Even when tiny he would hide things and laugh and clap his hands when he saw me trying to find them. It was usually something that I needed in a hurry and he would direct me to any place but the right one, and would chuckle like mad if I could not find it. Sometimes he forgot completely where he had put the article that was being looked for. One incident that stands out in my mind was the occasion when I took him for a ride in his pram soon after he had had his glasses. After some time I noticed that his glasses were missing, so I retraced the afternoon walk and covered all the ground that we had been over in an effort to find them. All the time he was laughing and pointing at the ground.

It was not until I had given up all hope of finding them that I returned home. On dusting his pram I found that he had hooked the side pieces between the spokes of the wheel and they had been going round and round. He thought that that was really funny but that was one of the times that he really got ticked off. He never tried it again.By now war had been declared and toys became almost impossible to obtain so I made them for Terry, only to find that a book or old newspaper or music gave him the most pleasure. Obviously he could not read but he seemed to get a lot of pleasure out of looking through a book or newspaper, especially if it had pictures in it. Certain incidents that happened during the war time which readily come to mind concern the difficulties in rationing, especially in regards to clothes and bed linen. One day I was boiling the weeks quota of white sheets, pillow slips etc etc when Terry decided that his Union Jack could do with a wash. Unknown to me he had put it in with the whites. Never have I seen so many colours evolved from red, white and blue in all my life.

Also about this time starch was almost unobtainable. I had made up a bowl of starch into which I put Ralph’s collers. Terry decided to help by adding a bucket of sand. I do not think that I need to dwell on the state of my husband’s neck for weeks after that incident. One other piece of help that Terry was responsible for was mixing the last pound of rationed sugar with some small coal. Ah well. Did not normal children get into just as many scrapes?At this time, I mostly had to cope with him alone as Ralph was at the Bristol Aeroplane Co. Ltd. . and had to work very late. Sometimes he only saw him out of bed for about an hour a week. It was a very trying time and needed much patience on my part, especially during the bombing of Bristol. This bombing seemed to go on day and night. Terry however was improving a little mentally and we were able to eventually get him into a little private school for a while. It was, alas, soon to close and I tried to find somewhere else for him. That proved a difficult task and I was afraid that he would be taken away from me by the authorities. I walked miles around Bristol trying to find another school.

One private school headmistress advised me to put him in “a home where he belonged. She would take away her pupils. She made me feel an outcast.Later on we met a mother of a mentally handicapped boy of sixteen, and asked her how she managed about education for her son. It appeared that she had sent him to a fee paying school, the fees of which were so high as to be out of the question insofar as we were concerned. I also asked her whether having a mentally handicapped son made her unhappy and was shocked to hear her say that it did not. She never even thought of him as being any different to other children. I could not understand her attitude at the time, but now, so many years later, I realise that she was right. I too feel the same way.

About ten years ago we saw in the local press a small advertisement about the Bristol and District Society for Mentally Handicapped Children. It mentioned that meetings were held every month and we decided to go along and see what exactly was being done. It turned out to be one of the best things we could have done. We were amazed at this first meeting to see so many people there. There were about thirty members present and on asking Mrs W Moore the Hon: Secretary, if everyone present had a mentally handicapped child, were astounded to find that they had. We had thought that we were one of the very few families who were in that position. This was of course, the direct result of our having deliberately but quite wrongly, as it turned out, pursued a policy of keeping ourselves to ourselves.We straight away felt a lot better. We were sorry to know that so many other families had the same trouble as us but at the same time very glad to realise that we were not alone any longer. Little did we know at the time that we would be, one day, priveledged to play a bigger part in the affairs of the Society.

Friday, 20 January 2006

Oh brother

This was originally on the BBC Ouch! Website

There's a great scene in the film Afterlife, 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.

Monday, 16 January 2006

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………..

Tuesday, 10 January 2006

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,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? 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?”

Thursday, 5 January 2006

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…………………….

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