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Monday, 18 October 2021

What Down's Syndrome is not !

 As it is currently Down's Syndrome awareness month I thought that maybe I should write a bit around the facts of Down's syndrome before it occurred to me that there is actually a lot of information out there about the condition, even if some of it is still very outdated.  So instead I thought I'd write about what Down's syndrome is not, maybe a bit about what it is and a bit about the impact forty seven years of being the mother of someone who has the condition has had on my life and what I have learnt.


Down's Syndrome is NOT what someone is, it is a condition a person has!
Above is a photo of my eldest daughter Sammy, it was taken while we were away enjoying a short break recently and yes she has Down's syndrome but she is most defiantly not Down's syndrome, Down's or a Downy.  She is Sammy and she has Down's syndrome (trisomy 21) but more than that she is a much loved daughter, a sister, an aunt, a granddaughter, a farm helper, someone who loves to go on holiday, a bit of a film buff and so so many more things.  Down's syndrome is part of her genetic make up but it does not in itself define who she is as first and foremost she is a person as uniquely individual as any one of us.  There are certain characteristics that she has in common with other people that have Down's syndrome but she is so much more like the rest of us within the family than she is other people with the condition and her personality with her wicked laugh and her slapstick sense of humour are all very much own. 
Based on my experience as Sammy's mum I have certainly learnt over the years never to make assumptions about what a person with Down syndrome will or will not be able to achieve as everyone is an individual.  When she was born I was given the worst case scenario of what her and my life was likely to be like and it wasn't a very pretty picture that was painted.  She wasn't expected to live much beyond twenty five and it was thought that as she grew her behaviour was likely to become far to difficult for me to manage and she would be unable to live at home.  How glad I am at how wrong this information was as at forty seven Sammy continues, out of choice, to live at home, enjoys an active outdoors sort of life and really is quite a gentle soul.  Okay it has been known for her to try to kick chickens or goats out of the way sometimes when working as a farm helper and she has challenged a goat with a broom before but overall she is a gentle person who enjoys her life.  Life is not without it's challenges but Sammy is not her condition, her condition is a part of her.

Down's Syndrome is NOT a disease and it is NOT contagious!
 Down's syndrome is a condition that a person is born with and it was in 1886 that  John Langdon Down was accredited with fully describing the syndrome, although there are others who had described some aspects of the condition earlier than this.  It was not until 1958 however that Dr Jerome Lejeune  discovered that the occurrence of Down's syndrome is due to there being an extra copy of the twenty third chromosome hence trisomy 21.  This occurs by chance at the time of conception and in the majority of cases cannot be inherited.   
There are also three types of Down's syndrome:
*Trisomy 21 occurs when each cell in the body has three separate copies of chromosome 21 instead of the usual two. This is the most common type and the type that Sammy has.
*Translocation Down's syndrome occurs when an extra part or a whole extra chromosome 21 is present but is attached to a different chromosome rather than being a separate chromosome 21.
*Mosaic Down's syndrome occurs when some cells have three copies of chromosome 21 but other cells have only two copies of the chromosome.




People do NOT have mild, moderate or severe Down's syndrome
A person either has Down's syndrome or they don't.  However everyone with the condition will have some degree of learning disability with this being different for each individual.  
This has not always been understood though and it wasn't that long before Sammy was born in 1974 that children with Down's syndrome had became entitled to an education.  Prior to the Education Act 1970 children with Down's syndrome had been classified as uneducable and considered to be severely mentally handicapped (terminology of the time).  Even when Sammy went to school in the late 1970's I found that there was still considerable surprise at what she was able to do and learn and I believe that this was due to peoples preconceptions of the condition and due to this people had low expectations of what she could achieve.  This does seem to improved a lot since Sammy was a child with education now being much more inclusive, although sadly still in some areas there still seems to be a lack of understanding as to the worth of people with Down's syndrome, but that's a subject for another day.

Down's Syndrome is NOT something that people with it suffer from!
Although there are conditions that may be more prevalent among people with Down's syndrome that can cause varying degrees of suffering a diagnoses of Down's syndrome in itself does not condemn people to a life of suffering.   In fact most people with the condition given the opportunity lead full, active and meaningful lives, celebrating individual achievements and reaching their own individual potential and whereas everybody will not reach these heights there are actors, models, dancers, photographers, artists, campaigners, speakers, athletes, chefs, business owners as well as a young CBeebies presenter all of whom have Down's syndrome.   




Down's syndrome is NOT scary!
Says she who was terrified and wept bucket loads of tears when first receiving Sammy's diagnoses all those years ago.  That was before I realised that she was not her diagnoses, that she was my daughter and deserved to be given every opportunity to just be herself whatever that entailed.  I think it was the not knowing what to expect never having met anyone with Down's syndrome and the only information being given was around what she wouldn't be able to do and how hard it was likely to be to raise her, how different her life was likely to be from her siblings, just so many negatives.  To be fair to the paediatrician he was only doing his job and the things he told me were what was believed at the time.  Most of the information though had been gained from research of people with Down's syndrome living in institutions and not with their families and out in the community.  I'm glad to say that it did turn out that he was a very supportive of my decision to take Sammy home and get to know her taking things one step at a time and not trying to look too far into the future.  

Having my new born baby being given a diagnoses of something I'd no experience of and being given lots of negative information about the impact it would have on her life was scary  with my main fear being the fear to love her as I might lose her too soon.  I soon discovered though that raising a child with Down's syndrome was not scary and nothing to be fearful of. Although life has had it's scary moments I think most of them have been caused by my other  children rather than Sammy.  I'm not saying that life with Sammy has been free from challenges, it hasn't there's been plenty at every stage of her life and now as she gets older there are different challenges to face.  But having and raising a child with Down's syndrome is nothing to be scared of and our society should not be scared of people with Down's syndrome either but open their arms wide and embrace and value the diversity of gifts and talents that each individual brings with them and  celebrate their worth. 









Wednesday, 22 September 2021

This Afternoon we Played Swingball

 This afternoon we played swingball and I have to be honest and say that I really didn't want to. I'm not a great lover of the game at the best of times and this afternoon I was tired and what I really wanted to do was sit down enjoy a cup of tea and possibly have a nap but we played swingball because it was what Sammy wanted to do.  Now I'm not in the habit of giving in to Sammy's every whim and whereas looking after myself is of great importance, how can I care for someone else if I don't take care of myself, her wanting to play swingball this afternoon took priority.


There are several reasons that it was important that I played swingball with Sammy this afternoon rather than having a nap not least being that it was her choice of activity and it is crucial that she has the opportunity to make choices about the things she wants to do when so often within our society assumptions are still made about her ability to decide things for herself.  Also I am very aware that as she gets older, Sammy is now forty seven, there is the possibility of early onset dementia as this seems to be more prevalent among people with Down Syndrome than it does among the general population.  If Sammy is going to get dementia, although this is not inevitable, it is not something I can stop but I like to think that maybe I can at least help to delay it by ensuring that she keeps both physically and mentally active and playing swingball involves not only physical movement but also the use of hand/eye coordination and as she's never quite sure which way I'm going to hit the ball back to her it is helping to keep her mentally active.  Playing swingball for us is more than just a game in a way it is a therapy and although I often wish that there was someone else to play the game with her more often and I could have a rest sometimes, if Sammy wants to play swingball and the weather is in our favour that is what we shall do.


Thursday, 15 July 2021

Sticks and stones may break my bones but ....

 Sticks and stones may break my bones but words will never hurt me.

What a load of twaddle!  How naive, loved and protected from harm was I when as a young children we would taunt this in the school playground.  If only it were true and words never did hurt us, guided and steered us, kept us on the right path but never deep down hurt us.


I love words, I always have, possibly due to my maternal grandparents who introduced me to the card game Lexicon as a child and used to reward my brothers and I with books.  I love reading, word searches, scrabble, boggle, talking, the outdated art of writing letters to distant friends.  words are fun, they are exciting and within the English language there are so many of them.  A memory I have related to words is from when I was about five years old and my dad read out the clue he was struggling with from the Times crossword to me.  Much to his amazement I came out with the word Mephistopheles which happened to be the correct answer.  Being the loving dad he was he thought his only daughter was a genius, which I most definitely am not.  I just think it was a word I'd heard somewhere, liked it and had it rolling around my tongue at the right time. I loved words.  It was only as I got older that I began to discover how powerful words can be and the damage that misplaced words can cause.

During my school years I was never the most academic student my leaning was much more towards creative pursuits and reading for the pure joy of it.  English literacy lessons where  you had to read a book and then dissect it were painful, I just wanted to read a book and lose myself in it , not question every word the author wrote.  I digress. The power of words, not being the most academic it tended to be quite frequently written on my school reports "Andreana could try harder".  I can't remember this statement ever being accompanied by any useful advise or support on what I could do, just that I could try harder.  The consequence of this one short line is that to this day I am my own worst critic and can find myself concerned as to whether or not I have tried hard enough and sometimes even fighting a fear to try in case of failure.  There is an underlying fear of not being good enough that I battle with.  Thankfully this does not dominate my life as there are more loving, affirming and positive words spoken over me than there are negative ones.  This sadly is not the case for everyone though, people can be destroyed by words.  On asking, the little device in the corner of my room has informed me that it was the playwright Edward Bulwer-Lytton in 1839 that wrote the words "The pen is mightier than the sword".  I don't know his reason for writing these words but maybe it was pointing out that whereas a sword, like sticks and stones, inflict physical damage the damage from words can be long lasting.

 Words are powerful and the words that are written about us and spoken over and around us help to grow and shape us into the people we become.  Positive words, words of affirmation, caring, loving, supporting and trusting words all build us up giving us a sense of worth and value, a sense of purpose and belonging and so much more.   On the other hand though negative words, misplaced words, words of condemnation, cruel, vicious and hateful words can all destroy.  Words are powerful!  I can still hear my mum saying to me  "If you can't find anything nice to say don't say anything at all", and the words of a poster I recall giving to my son many years ago springs to mind too "Don't open your mouth before your brain is in gear".  These are sound words of advice carrying well into this day when demeaning, hurtful and hateful words seem to be so readily thrown around on social media platforms.  Sometimes, although still totally unacceptable behaviour, this may be thoughtlessly done in the pique of the moment or through ignorance of the harm that a word or expression may do.  Sadly though it seems that it is all to often done with the intent to hurt and discriminate with no care for the damage that may be done with those words.  


Currently we are hearing about the use of hateful, racially abusive words directed, by a minority, towards three admirable young men.  Young men that were gallantly representing their country in the Euro 2020 football final.   The game had gone to penalties with these three being among those going forward to take penalty shots.  They missed, losing England the match, they must have been devastated knowing what had been resting on their shoulders.  Fans were devastated too the trophy was not coming home, this is the closest England had been  to it for such a long time, it had been within touching distance and then gone.  I felt the lose and I'm not a football fan.  Disappointment is however no excuse for the racially abuse messages these young men received.  While it may only have been a minority acting in this way their deplorable words potentially had the power to destroy lives.  It is totally unacceptable that anyone is treated abusively or discriminated against and the majority were outraged at this behaviour displayed by a few.  Sadly though as people stood up in defence of these young men unintentionally others were getting hurt.  Words such as idiots, cretins and imbeciles were hurled as insults as people expressed their feelings about this abhorrent behaviour.  These words along with others that have merged into everyday language to be used in an insulting way have all in the past been medical terminology used to describe people with learning disabilities.   As understanding grows terminology may change but this doesn't make the words any less hurtful or demeaning when used without thought.  Words are powerful, words can hurt.  As Sammy, my daughter, was growing up and before Down’s Syndrome was widely known as Down’s Syndrome it was not unusual to hear the term Mongol or Mongoloid (the medical terminology used when I was given the diagnoses of Sammy’s condition) thrown out as an insult or used in a verbally abusive way in regard to someone’s behaviour or to simply to try and offend them.  I’m glad to say that use of this particular terminology in this manner  seems to have faded away.   The feelings evoked from the misuse of these words however runs deep and as a parent you grow broad shoulders and find inventive ways to protect your child from the damage that being the brunt of peoples jokes and fears and misunderstanding can cause.  Nobody wants their child growing up believing that in the eyes of society in general their lives are considered to be worth less than that of their siblings or anybody else's but this is what the thoughtless use of words can do. If  these words are not challenged  the negativity can seep deep into your fibre leaving tender wounds that may never completely heal.  

Words are powerful, words can hurt, destroy and discriminate and so often target the vulnerable and marginalised within society, those that can find using words a challenge, people that should be cared for and protected from their harm.  Words are powerful, words can hurt but the power of words can also be used to heal, praise, restore, build self-esteem and a sense of self-worth,  include, make welcome,  raise up,  affirm, bring joy, hope and love....... Words are powerful use them carefully.

  


Friday, 9 July 2021

The Times They Are A-Changin

 

 I’m quoting this title to a Bob Dylan hit song from the 1960’s because to my mind and to that of a lot of others within the Down’s syndrome community a monumental event took place this week and times are changing.

 A very brave young woman with Down’s syndrome was in court to challenge the Government on section 1 (1)(d) (Ground E) of the 1967 abortion act, which specifies that there is a substantial risk that if the child was born it would suffer from such physical and mental abnormalities as to be severely handicapped.  Down’s syndrome along with conditions such as cleft palette and club foot fall into this category. 

The challenge is not in any way about trying to take away choice it is about bringing the upper limit for abortion down to be in line with that for typically developing babies which is 24 weeks.  Currently babies with Down’s syndrome can be aborted up to 40 weeks, until just before they enter the birth canal.   Heidi, the young woman who is challenging the Government and who herself has Down’s syndrome considers this to be “Down Right Discrimination” and I have to admit that personally I agree with her and I can only imagine how awful it must have been to hear people discussing whether or not your life is considered to be as valuable as someone else’s.

Times and attitudes are changing though because who would have imagined nearly 47 years ago when my daughter was born that someone with Down’s syndrome would now be far surpassing any expectations of a person with the condition.  I remember being told that Sammy, my daughter, would probably not live beyond 25 years and it was also very likely that she would not be able to continue living at home as she got older as children with Down’s syndrome could become extremely physically strong and her behaviour become so challenging that I would not be able to cope.  I am glad to say that this turned out to be misinformation, well most of it!   Sammy is actually physically very strong, especially her upper body strength but this isn’t very surprising when you spend two days a week as a farm helper and a lot of time wielding a broom around.   Times are changing but not fast enough when the lives of some unborn babies appear to be considered less worthy than that of others.

When a test shows positive of there being a high chance of a baby being born with Down’s syndrome that is all it can do, it cannot predict that baby’s future, given the chance people with Down’s syndrome can achieve amazing things.    Like the general population people with the condition are varied and unique individuals with different likes, dislikes, interests and abilities, there are now models, actors, dancers, conference speakers, campaigners, business owners and even an Iron Man Triathlon finisher that have Down’s syndrome, they are not suffering, they are living their lives to the fullest.  Okay, most people with Down’s syndrome won’t achieve these things but then again most likely nor will you or I, personally some days I consider it an achievement to get out of bed and put one foot in front of the other without tripping over let alone dance or take part in any sort of race.  The point I’m trying to get across is that people with Down’s syndrome are more alike than different from everybody else and the direction of their life is not predetermined before they are born.  Yes, most people with the condition will need help and support, some more than others, to live their lives the way they choose but in truth are any of us fully independent and able to do everything for ourselves. Surely rather than being totally independent most of us are interdependent to some degree and need to rely on others in differing ways to help us through life. 

People with Down’s syndrome, like all of us need to be loved and valued for who they are and not made to feel in any way that they are unworthy and less valued within society, let us embrace diversity and continue to quote the words of Bob Dylan “Times They Are A-Changing.



Saturday, 29 August 2020

Discombobulating Times and Self Care

 Discombobulated, isn't it just the most wonderful sounding word? and it so perfectly sums up how I and probably most other people have been feeling for a lot of the time this year.  It means being in a state of confusion, anxious and not really knowing whats going on.  I've undeniably been struggling to know up from down, left from right and as for what day of the week it is, well there'd be no hope if I didn't put it on the door of the fridge every day.  Befuddled sums things up pretty well too.

There we were back in the first quarter of this year getting on with life taking it for granted that we could  go out for coffee, meet friends, go to church, spend time with the grandchildren, hug people we care about, spend time in each others homes, have family parties, plan holidays, go to work and so many, many more things that were part of our everyday lives.  Sammy and I also had time away from each other.  

                          
                          


Then WHAM along comes COVID-19 and suddenly we're thrown into total confusion none of us have ever dealt with a pandemic before and it's quite scary.  Suddenly we can't do the things we're used to doing anymore there's something dangerous out there that we can't see. Sammy had to stop going to the care farm she went to twice a week, we couldn't go out for coffee (a favourite activity) going to church couldn't happen in the way it usually did, we couldn't even go out shopping and had to rely on being able to get an elusive supermarket delivery slot or other people to get things for us and we're not used to depending upon other people in that way.  Like all the other extremely vulnerable people Sammy was suddenly grounded big time (although others may call it shielded) and I had to protect myself in order to be able to be able to protect her, our only possible contingency plan is don't get sick.   It really concerned me as to how Sammy would cope with all the changes however I should have known not to worry as she did what she's always done all her life and  amazed me as she took it all in her stride and just got on with it.  Although she did seem to find it a bit strange when I decided to try and recreate what should have been our  holiday in Cornwall in our back garden. No mean feat when you live in Norfolk.   I have to admit that although it didn't come close to being able to go on holiday it was quite fun making our own pasties, wine tasting, drinking lots of coffee and creating the quaint little village of Losttheplot, which at that point I most certainly felt I had and I'm not that sure that I've found it again yet.  
                                

               
I think Sammy has probably coped as well as she has with the changes because we've managed to find lots of different things to do at home, we've played swingball, hula hooped baked, painted, played board games, done jigsaw puzzles etc and we've also maintained links with some of the things we were doing before COVID-19.  Contact with the farm has been maintained through video link, then the occasional visit to feed the pigs when no one else was there and now we go together one morning a week until it's safe enough for her to return to her pre-Covid level of attendance.  Church has been interactive online and once restrictions started to lift Sammy's sister and her children have come and spent time in our garden, so although things have been different we've managed to maintain some semblance of our normality.  

 If I'm completely honest though I'm tired now and although Sammy is coping really well as the weeks go on I have to admit that I'm having times where I'm really struggling, I'm missing the couple of days a week that I had to myself.  It was on those days that I'd go for a quite walk on the beach, meet a friend for coffee and a chat, read a book, do the things that refreshed me and strengthened me to keep on with my caring/supportive role.  Over the past few months I like most other family carers have had no break at all from caring and as much as you love the person you care for it's tiring which makes finding time for self care possibly even more important now than it was before and it's always been of utmost importance.  But how do you manage to look after yourself when you get no break from supporting the needs of another person?  I so wish I had a one size fits all answer or any real answer but I don't. Because of our different circumstances, different needs, different personalities we're all going to need something a bit different.  What I do know though is that finding and prioritising that time for yourself although at times extremely difficult to do is so important.  Even if all you can manage some days is ten minutes on your own with a cup of coffee or five minutes on your own in the bathroom take it, use it and cherish it to get you through the next bit of the day and if you can manage to take a couple more five or ten minutes throughout the day take them and enjoy them without guilt.  If you can take even longer go for it.  I've actually managed to spend a couple of hours today making bath salts and other lovely smelly things something I really enjoy doing and and find relaxing with the added benefit that my house is now filled with the lovely scent of peppermint and lavender which is helping me to feel quite relaxed tonight.  To be able to do this for myself though I had to decide that it was okay for Sammy to spend most of the day playing games on her  ipad and watching films, not an easy decision.  Another day Sammy and I will probably do these activities together, but today I needed to do them for myself.  It's constantly trying to keep a balance between both our needs.

 As carers taking time to look after ourselves does not always come naturally or easily as we're constantly aware that we need to meet the needs of others, but I learnt a long time ago,  though I frequently forget, that if I don't look after myself I'm really not a lot of help to anybody else so self care is extremely important.  I know that Sammy benefits far more from my being relaxed than she does from my being tired and stressed out.  When I've remembered to fit in taking some time for myself and doing something that I enjoy I'm far more likely to find pleasure alongside Sammy in yet another game of Swingball or for watching a film that I feel I'm watching for the fifth millionth time  (I think I know nearly every word to Four Weddings and a Funeral) than I am to think ohh for f....sake must we really do this again, because yes we must.  So as hard as it can be at times and even more so during these discombobulated times, all you carers and parents out there remember that you are important and amazing  and what you do is so valuable and if your not functioning well the people you care for are going to struggle too, so whenever and whenever possible find time for the things that bring you peace, joy and refreshment and enable you to keep going and caring for those you love one step at a time.
                                  


















 

Saturday, 14 October 2017

Changing Attitudes

As I was driving along the other morning to drop Sammy off at the farm where she’s supported for a couple of days a week to care for the animals, serve in the barn shop and other such farm like duties we were delayed.  This delay was due to slow moving agricultural vehicles, quite the norm around here especially at this time of year as the autumn harvest is gathered in.  As we were crawling along behind these vehicles I got to thinking about how important they were even though I felt held up by them because of how slowly they were going.  I had to remember that they also had somewhere they had to be and an important job to do and just because they looked different from the cars and other vehicles and moved so much more slowly it didn’t mean that they shouldn’t be on the road.
Now I never thought that I’d be likening my daughter in any way to a maize harvester (I think that’s what it was) but here I go:  I know that Sammy is never going to be classed as a high achiever within a main stream culture due to her learning disability, although she has achieved an amazing amount throughout her life, she has abseiled down a rock face, had a paid job and traveled independently to name just a few things. It does sadly however seem that it is all too easy within our society for her and others to be dismissed and deemed as less worthwhile because they don’t meet an expected norm.  This finds me asking myself and wondering as to where we would be and what sort of society we would become without the richness and diversity that people with Down’s syndrome contribute to their communities and society in general. 

To harvest maize these days it requires a maize harvester to get the job done, it’s not a job that could be done by something faster moving.  Within agriculture different machines that move at different speeds and in different ways are required to farm efficiently as within society different people are needed using their different skills, abilities and talents to enrich and grow that society.  Sammy is never going to have a high flying job but that doesn’t mean that she doesn’t gain satisfaction from what she does or contribute to her community and to general society.  I’ve never known anyone take as much pride in a neatly swept garden or a cleanly swept yard or mucked out barn as Sammy does.  She also likes to see supermarkets/shops looking neat, picking up and rehanging anything that has fallen of a rail or empty boxes that are on the floor.  To many these tasks may seem menial but societies really wouldn’t work very effectively if everybody could or was only willing to do the same things, a diversity of abilities and skills are needed.  Someone who is good at and satisfied with sweeping and clearing up after others is of equal value to someone in a high powered job, they both do things that are necessary for a society to function, they’re just different.  Like the maize harvester and a seeding machine they are very different pieces of machinery doing different jobs but complementing each other, neither one of them is less important than the other. This does not however mean that people should be denied the opportunity to aspire to their full potential and it should not be assumed that because someone has Down’s syndrome they are not capable of achieving what they set their hearts to.  There are actors, models, musicians, conference speakers and athletes, to name just a few areas of life that people with Down’s syndrome are achieving great things, assumptions should never be made about a person with the condition as they are as unique and individual as anyone else.  Sammy loves to sweep/muck out, to work on the farm and to spend time by and in the sea, she also used to love riding and was an excellent horsewoman (lumber arthritis can make riding painful for her now).  These activities are however likely to be someone else’s worst nightmare as they may love to act to dance to make music or love fashion.  It really is time to celebrate the diversity and the individuality of people with Down’s syndrome and not be guided in our opinions by an outdated stereotype of inability.

During Sammy’s lifetime I have seen a lot of positive changes in attitude taking place.  Parents of children with Down’s syndrome now have more choice about where their child will receive their education.  Sammy had no choice except to attend a school that was classified as for the educationally sub-normal.  This in itself was an advancement as it was only in 1970, four years before Sammy was born, that all children in the UK were given the right to an education.  Prior to 1970 children with Down’s syndrome had been considered as ineducable and came under the umbrella of health services rather than education.  Terminology has also changed for the better. If a label must be given Down’s syndrome is a definite improvement on the term used when Sammy was born and learning disability is a better term than mentally handicapped, with special needs/additional needs being much, much better than educationally sub-normal.  I can remember my son saying, while he was still fairly young “Mum, how can anybody say that Sammy isn’t normal, because if she was any different it wouldn’t be normal for her.”  Children often seem to see things so much more clearly than us adults and can be so much better at accepting people for who they are and not making judgement because they may be a bit different.


Attitudes are changing towards people with Down’s syndrome especially as more children and young people are given the opportunity to be seen in the public arena as models and actors etc. and others continue to demonstrate that there are more similarities than differences between them and those without the condition.  I have to admit that as much as I have fears for the future of people with Down’s syndrome I also have high hopes that the myth of the old stereotype will continue to be broken as people with Down’s syndrome have the freedom to have relationships, get married, are gainfully employed and people within society continue to realise that those with Down’s syndrome have an equally valuable role to play within it. 
 

Tuesday, 22 August 2017

Reflections on Research


It was at the end of June this year that Sammy and I had to take a trip to London, this was quite a daunting prospect as we live a quiet, semi-rural sort of life near the sea these days and its many years now since we've been to central London.  I used to drive to and from Euston Station regularly when Sammy was in her late teens to early twenties to enable her to travel (in a supported group) to and from college in North Wales but driving wasn’t going to be an option this time.  So the train and London black cabs it had to be to get us to our destination.  I really wasn’t feeling adventurous enough to go on the underground especially as Sammy doesn’t cope very well with down escalators she tends to finds them a bit disorientating (must admit that I’m not too fond of them either) and she doesn’t like to feel too crowded.   Also because of the reason we were going it was important for Sammy to be as calm and relaxed as possible after all she was the one going to be doing all the work.  Even though we would be staying in a hotel overnight and we enjoyed a nice meal of pizza and prosecco we were not on a leisure trip, Sammy was going to be taking part in a research study.  This was not the first one she had taken part in so she had an idea of what to expect but it was the first one in London as all the others have been in Cambridge.  This particular study was an eye study looking at the action of dead cells at the back of the eyes and was just one study in part of a large research programme being carried out by the University of Cambridge into Defeating Dementia in Down’s syndrome.  I’m not going to try and explain about the research as there is a video where Professor Tony Holland does that far better than I would be ever be able to, hopefully this link will take you there https://youtu.be/pB7iqWUXQIM if not the video can be found on the research page of my blog.
I’m so proud of Sammy for taking part in this research as having drops in your eyes, needles in your arm, following dots in scanner machines and hanging around in a hospital for six hours is not great fun at the best of times and to be doing it when it is of no personal benefit is a really good thing to be doing.  She did it because the results of this research are likely to have a huge impact for the better on the lives of people both with and without Down’s syndrome in years to come.  Beating dementia has got to be a good thing as it is something that damages and steals people’s lives.  Down’s syndrome on the other hand is not a debilitating life threatening disease that causes people to suffer.  It is a genetic condition that people are born with resulting from the presence of an extra chromosome 21, yes people with the condition do have some degree of learning disability and there are health issues that may be more prevalent, although not inevitable, but these things do not stop people with Down’s syndrome from leading full, active and fulfilling lives. 
 Sadly though the thought of having a child with Down’s syndrome still seems to be considered by societies in general as something to be feared and avoided as myths and misunderstanding about the condition still abound.  It is very easy to fear what you don’t understand or can’t visualise especially if fears are put into your head by others.  I became fearful when expecting my third child, how many of these fears originated from inside me and how many from external sources I can’t say.  I do suspect though that they started when the doctor began to talk about the possible risk of my having another child with Down’s syndrome.  What would having another child with additional needs do to the dynamics of our family?  Would we be able to cope if we had two children with additional needs?  Would I be able to give all my children enough love and care? Was it fair to bring another child into the world that may not have a very long life span? .......... Also I was made to feel that it would be very irresponsible of me to bring another child into the world that had Down’s syndrome.   Sammy was only four years old at this time, beautiful, healthy, much loved and developing well, even if she was reaching her milestones a bit later than her brother did she was meeting them, but all the information about how her future would look or how long it might be was still so bleak.  The general conclusion seemed to be that I should have an amniocentesis, this is a form of testing that involves a sample of cells being taken from the amniotic fluid that surrounds the foetus in the womb and would detect whether or not my baby would have Down’s syndrome.  It also involved a trip to London a very large needle and a very anxious wait.  That trip was surrounded with even more concerns and anxieties than the recent one with Sammy due to the risk of miscarriage and the uncertainty of everything.   I did feel at the time though that it was the right thing to do, all I can say now is that after nearly forty three years of living with and loving Sammy I am so glad I didn’t have to make a decision about termination as I might well have made one that I would have lived to regret.   

When Sammy was small understanding of Down’s syndrome was very much based on research that had been carried out with people living in institutions with little being known about how people would thrive living with their families, being brought up within the community, having an entitlement to education and receiving good medical care.  With so much more now being known about the condition and the potential that people with it have to learn, to work, to live independently and to make choices about their lives it’s hurtful to know that it’s still thought of as such a severe disability that termination on the grounds of identification of Down’s syndrome is still permissible up to forty weeks gestation.  It also grieves me that with the latest test NIPT (non-invasive pre-natal testing), which is considered to be 99% accurate at detecting if there is a chance of a baby being born with Down’s syndrome, there is likely to be to an even higher termination rate. In the UK this already stands at 90% with it seeming to be expected that women will want to terminate if Down’s syndrome is identified.   I wouldn’t want to deny anybody the right to choose whether or not to have a termination, whatever my personal feelings are, but the pressure that there seems to be towards termination needs to stop.  It’s vital that balanced unbiased information is provided as standard to enable expectant parents to make a fully informed decision and that the termination deadline is lowered to the same as for ending other pregnancies.  Then perhaps people with Down’s syndrome won’t be made to feel that their lives are worth less than other peoples.  I would find it quite easy to go on for ages on this topic, but I won’t, what I will do is finish with a quote that I saw somewhere the other day.  It’s from Disney’s Pocahontas a film that was a firm favourite of Sammy’s for a while.


“You think that the only people, who are people, are people who look and think like you.  But if you walk the footsteps of a stranger you’ll learn things you never knew you knew.


What Down's Syndrome is not !