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. 

 

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.

Thoughts from a train journey

Sammy and I had to take a trip to London recently, the reason why is for another post, but I got to thinking about journeys in general and all the emotions that can be involved in them.  It also got me to thinking about a trip I'd taken with Sammy when she was I think about 4yrs old.  I can't actually remember where we were going but we were going by train.  Everything had been carefully planned and naively I thought we'd covered for every eventuality of travelling with young children but what I hadn't foreseen was Monkey's fall.  Now I know that Monkey should probably have been traveling in a safe Monkey carrier, otherwise known as my bag, rather than in the arms of a sometimes unpredictable four year old but it had been a case of picking my battles.  Sammy and Monkey were at that time constant companions and quite inseparable and up until that moment everything had been going really well.  It was as Sammy was lifted onto the train that Monkey fell straight through the gap and onto the track.  Now  believe me this was a big, big deal, Monkey was on the track, we had no way of rescuing him and we had a distraught little girl and her brother to comfort.  I really can't remember just what happened next did but to my immense relief Monkey was rescued by the train's guard, to whom I remain grateful to this day.  We had found ourselves in a situation that we weren't able to deal with by ourselves but having someone there that was able and willing to help us meant so much.  As a parent of a child with additional needs (however old your child may be) it can sometimes feel as if you are having to cope with everything on your own and there are times when it can seem quite overwhelming, so when somebody comes alongside you, for however brief a spell, and provides the support you need to get through that period it makes the journeying just that bit easier.

During the confusion of my emotions after Sammy was born I don't know how I would have coped without the people that came and walked alongside me for varying lengths of time.   My family were just fantastic and whatever their feelings or fears may have been they were there being loving and supportive and totally accepting of this newest member of the family and willing to learn along with me what it would be like to raise a child that was considered to be different.  It also helped that we were introduced to and able to spend time with another family who had a child with Down's syndrome.  The support that came from being able to share my fears of just about everything related to raising Sammy, and there were a lot of them, with someone who had an understanding of how I was feeling was of immense value.  Looking back if I'm completely honest I can't remember a great deal about the early weeks of Sammy's life, just that we started to settle into a routine that became normal for us.  Washing took up a fair amount of time, with there being no automatic washing machine, tumble dryer or disposable nappies for us, it was terry towelling squares, a bucket full of napisan (nappy soaking solution) and a twin tub.  Feeding Sammy was also quite a time consuming business as although she had no major feeding issues she would feed for a little while and then need a short break repeatedly until she'd finished.  It is probable that this was due to her having narrow nasal passages and finding it easier to breath through her mouth.  This is not uncommon for babies with Down's Syndrome, feeding issues may also be due to low muscle tone and an enlarged or an apparently enlarged tongue due to the oral cavity being smaller.  I think I also remember a lot of trial and error in finding the bottle teat size that worked best for her.   Due to various reasons I had made the decision to bottle feed while I was still pregnant and it was in no way linked to Sammy having been born with Down's Syndrome, although it is likely that I would have been advised to bottle feed as attitudes and understanding in the 1970's were quite different than they are now.  Although nappies and feeding did tend to be quite dominate  in our life  I'm pretty sure that I also found time for playing with and reading to the children, going for walks and visiting friends oh and of course the regular routine hospital visits for progress checks.  Life was busy with two small children.

As Sammy grew her individual personality started to really shine through and it became quite obvious that my girl was growing into a determined, sassy little minx. From early on it became one of her favourite occupations to torment her brother and try to get him into trouble. At first she managed quite successfully, that was until the day she was busted.  There were  occasions when I had to leave the children while I popped to the loo, answered the door or quickly went to the kitchen etc.  even though I was only gone for the briefest time I would often have to rush back as Sammy would start to cry .  On my return I'd find her brother looking rather sheepish and I'd discover that he had hit her or taken her toy.  He of course got an appropriate telling off for this which Sammy always seemed to be quite happy about, so one day I decided to sneakily watch them.  That's when I discovered that Sammy would wind him up so much that he didn't know how else to respond and he lashed out, he was still only little himself.  She was busted, my son was encouraged to find other ways of venting his frustration and I learnt very quickly never to make assumptions.  Sammy also thought it was hilarious to roll and hide under the sofa, a very 1970's affair with wooden legs.  I totally freaked out the first time this happened, how could I lose the baby? I'd really no idea where she could have gone, until she giggled.  This soon turned into a great game of hide and seek.  My baby girl was doing things and demonstrating a thought process and sense of fun that obviously quite wrongly I don't think I had expected her to be capable of doing, especially so young.  It was wonderful to see her developing like this as I think I'd been guilty of making the mistake of seeing what she couldn't and may never be able to do.  This set me off on a big learning curve of how to focus on the positives and value every little step and achievement.  There was going to be so much that this girl of mine would be able to achieve we were going t have to take it one step at a time though and not look to far ahead.  Sammy later went on to discover how to knock the bottom out of her cot and escape, I think we decided that perhaps  it was time she had  a bed, another time she decided to throw herself away in the pedal bin and as well as getting up to several other antics she always used to blame poor Monkey if she was caught getting up to mischief, innocently looking at me and saying "Monkey did it".  On the day of the bin episode I am just so glad that I had emptied and washed it out  and I'll never forget the huge grin on her face as she looked at me and told me that she was "in the bin", she knew exactly what she was doing.  I used to tickle and tease and play with her and her brother and say that if they didn't tidy up their toys or put their shoes on or away etc. I'd have to throw them in the bin, the children that is.  Sammy knew how to play with me and she was calling my bluff.  To my mind all these things clearly demonstrated that Sammy had an ability to learn however as it was only a few years before she was born that the 1970 Education (Handicapped Children) Act had been introduced we were not going to be in a position to choose where or how she was educated.  It was a positive thing though that she was going to have the opportunity to get an education at all as prior to this act which gave every child in the UK a legal right to education children with Down's Syndrome had been deemed to be uneducable.    On that note I think it's time to leave my musings for now and come back another time with my thoughts on education, Sammy's experiences of it and how things have changed.

The voyage begins

It was way back in the late summer of 1974 that the story of our voyage begins.  I can't remember anything extraordinary about that summer before the start of our voyage, it was an average British summer weather wise, wet, windy and on the cool side with a bit of sun thrown in for good measure.  Politically there was a lot going on that year with the end of the miners strike and two general elections but I was young, happily married and expecting my second child, a brother or sister for my gorgeous little boy, life was just about perfect.  As it was before the days of routine scanning or testing all I knew was that I was expecting a baby and I so hoped for a little girl, the ideal family.

It was during the morning of the 10th September 1974 that I realised that I was in labour, it was a couple of weeks earlier than expected but that was ok my neighbour would look after my son until my Mum could get there to look after him and my husband would come to the hospital with me.  We didn't have mobile phones, we didn't even actually have a house phone then so I waited for him to come home for his lunch, before informing him that I was in labour.  I was healthy and had been for all my regular check ups so we didn't foresee any problems and expecting things to take a while he had his lunch before accompanying me on my waddle to the hospital.  I think I need to explain things a little bit here.  We lived on a military base and my husband was an Army Nurse working at the hospital which our house very close to.  In fact it was nearer to walk to the hospital than it was to the nearest phone box so we turned up unannounced.  It's just as well we went when we did as the baby wasn't hanging around, very soon after we arrived I was taken straight to the delivery room and in a very short space of time my longed for baby girl arrived.  It wasn't the joyous time I expected though, my little girl was blue and the doctor wanted to get her straight into an incubator so they whisked away and I had to wait awhile to  meet her properly.  I was cleaned up and wheeled along to the ward where my beautiful little one, she weighed in at 5lb 9oz, was thankfully brought to me once the doctors were confident that she was a healthy colour and breathing properly. As my husband had had to go and let people know that the baby had arrived earlier than expected and sort out time off my beautiful baby girl and I had some precious time to ourselves.  As I sat with her in my arms just looking at her and welcoming her to the world I got to thinking that there was something that looked different about her and it bothered me, I couldn't quite put my finger on what it was though.  I wondered if it was something to do with how quickly she'd been born and tried to convince myself that things would settle down in time, after all she was only a few hours old.  Having sorted out what he needed to and being assured that our son was ok my husband returned and it was then that a nurse let us know that the paediatrician would like to talk with us.  Calmly he explained that our daughter was a Mongoloid (remember this is 1974 and terminology has improved since then) but they would need to do a blood test to confirm whether it was Trisomy 21 or Mosaic, at that time he suspected Mosaic due to her hand and feet patterns.  It was however to be confirmed that it was Trisomy 21. There are three types of Down's Syndrome Trisomy 21, Mosaic and Translocation that I will describe in a separate post.  As he explained the implications of our daughters condition to us my world started to fall apart, I'd never even heard of the condition let alone met someone with it, I later discovered why.  There were so many emotions to start to deal with and so many questions forming, would she learn to walk? would she be able to talk?  How long would she live? and so many more.  I can't remember exactly what options we were given at the time but there was no question in my mind that my baby girl was going to be coming home with us,  I'd carried her for nearly nine months, I'd given birth to her, she was my responsibility.  Yes in the early days I was scared to love her not knowing how long she was likely to live, what quality of life she would have, or if she would become to strong and possibly to violent to be able to live with us safely.  There were so many fears to deal with and so much uncertainty but she was coming home with us and as over time as I gradually started to deal with these fears and come to love her a determination set in, this little one was going to have the best that we could give her, she might be different than I expected or thought I wanted but she deserved pretty dresses, nice shoes, good toys etc. after all first and foremost she was a little girl, my longed for little girl. 

We remained in the hospital for a few days before coming home, it was then that Samantha Jane was properly introduced to her big brother and our voyage into uncharted territory truly began.