Monday, 21 March 2016
I received a gift a few weekends ago from a visiting family member. A beautiful bunch of rainbow tulips. It was a lovely surprise and a simple act of kindness that brought much pleasure for the week after their arrival. I had forgotten how much I really love tulips and how lovely it is to have some of outdoors indoors...
When I found out I was having a baby in 2010, I was concerned about how the future would be with a child; maybe some of that was to do with the surprise of finding out I was unexpectedly pregnant. I think that all first time parents have some fears about having a child, whether it is surrounding the birth, the sleepless nights, their own ability to manage as a parent or what lies ahead on such a life changing journey. All questions of course that you can't know the answers to until you experience it, and completely natural questions in embarking on a new learning experience.
However a few short weeks after my initial surprise, the goal posts were changed as I discovered that I was expecting a child with Down Syndrome. I didn't really understand the implications of this news having no real contact with anyone with Down Syndrome. I was quite shocked, to say the least, but as a person who likes to be prepared, I decided to try and arm myself with the facts and read as much as I could in an attempt to regain control of what felt very much beyond my control. Of course it's a tricky balancing act between finding out facts and scaring yourself silly.
I had many questions about living with a child with Down Syndrome, such as whether we would we be able to do typical things with our first child? Would he be able to walk and talk? Would he go to mainstream school? Knowing Jake was going to have Down Syndrome added a further layer of complexity to the general parenting concerns with no answers at that point. Those people who know me well understand that patience isn't my greatest strength!
I clearly remember a discussion with my antenatal mum friends a couple of weeks before my due date when we met for lunch (ah those were the days!) and I talked about how I needed to reset my expectations for the future, and that my baby wasn't likely to be able to go to University as both his parents had. One of my friends stopped me in my tracks and said “Why would you say that? You don’t know what the future holds!”. And she was right. It was a slap in the face. Why would I limit my child? I think I had become so caught up in the diagnosis of Down Syndrome and not yet met my beautiful little boy, that I was trying to understand what expectations to have. The lesson swiftly kicked me back into the right lane and the world is Jake’s oyster. It is not for me to define his future based on my or anyone else’s expectations. Looking back after 5 years, and being a few years further along the parenting path, I have learnt important lessons which include, taking one step at a time and not to focus too much about the future – the worry as a parent never goes away, but you must embrace and enjoy the time you have as it passes so very quickly!
One of the big milestones I did set my sights on was for Jake to attend nursery and me to return to work full time, with the eventual goal of him attending a mainstream primary school should he be able to. We have had many challenges in his short life with major open heart surgery at 5 months old, subsequent oxygen requirement until he was 2 and a half and not being able to walk until turned 3. These factors did impact on his ability to play alongside and integrate with his peers in nursery. His nursery class were a fantastic group of children and we have made many friends (both children and parents) since Jake and his younger brother have attended. Jake was accepted and loved as one of the gang. They also helped him when he needed it. When Jake was in the 1-2 years room, he wasn’t yet crawling and attached to an oxygen cylinder, his friends used to get books and toys for him as he wasn’t able to reach them. These were little toddlers who were only just able to walk themselves and yet they understood, accepted and supported Jake when he needed it.
Jake graduated nursery with his class mates last summer and is now attending one of our local (mainstream) primary schools. In reaching that point, there were many sleepless nights about whether we were making the right decision? Would he be able to cope? Would he be happy? I am delighted with how he has settled in and at half way through his first year, we can see him coming on in leaps and bounds as he is learning to read and is settled into school life. He seems to be a popular boy who is regularly greeted by older children in the playground! He has been invited on play dates and we have had invitations to 7 [seven] parties for his class mates since December. It feels like a different party each weekend but I am very pleased that he seems to be accepted as part of the class.
One invitation particularly touched me. A couple of weekends ago, Jake attended a party for a little boy who we hadn’t heard of. I assumed that this child was a classmate who we hadn’t yet met. It turned out that this wasn’t a child from Jake’s class. It was a friend from the playground who was in another class, who had invited Jake to his birthday party! A small part of me always wonders whether Jake has been invited as the whole class has an invitation. This has not been the case other than one or two occasions. But here was Jake, being invited to a party where that was not even a factor. What an amazing thing! I was so touched that Jake had made friends enough to be invited. Especially in light of the fact that the school has 4 classes in Reception, so almost 120 children in Jake’s year alone!
When I was a child, people with disabilities didn't attend mainstream schools, they went to special schools. Things have changed 30 years later, children of many abilities attend mainstream schools and I hope it adds a richness to that environment that would otherwise be missed.
I hope that Jake brings a different view on life to those people he encounters and that he continues to push boundaries, challenge preconceptions and outdated ideas of what living with Down Syndrome looks like today. Jake seems to have a positive impact on everyone he meets which continually surprises and delights me. He is a fully integrated and included member of his class in school, even after a short time, and I hope that he continues to bring rainbow colours to those he meets in his future, whatever path he chooses for his life. After all, the world is his oyster!
I was reflecting this morning on what it was that made the tulips so beautiful? I think it was the fact that they were Rainbow Tulips and contained a combination of different colours. This set them apart from those tulips which are all one colour and alike. The diversity of colours combined really brought them to life…
This blog was published by Down with Dad as part of 21 Blogs about Being Different in Support of World Down Syndrome Day in March 2016.
To read the other blogs, visit his website: http://www.downwithdad.com/21 blogs
Tuesday, 8 March 2016
Another International Women’s Day. Another year of men sighing, rolling their eyes and asking “What about International Men’s Day?”.* “Aren’t we all considered equal now?” “Enough with having to make a point!”. But are women actually equal?
When I was growing up in the late 70s and 80s in Liverpool, it was a time of political unrest and racial tension. We saw riots on the streets not very far from where I lived. Since then, as a society it *feels* like we have come a long way, there has been more acceptance of difference and laws have been put in place to try and redress those open inequalities.
My own childhood saw both of my parents trying to better their circumstances and attending college, night school and university whilst trying to juggle also working, keeping a home running and organising three children (one of which was born during this period). This definitely had an impact on my view of the necessity of education and resulted in me not even questioning going to University after school. It was a foregone conclusion and expectation was high, which in retrospect did place a certain amount of pressure on me. But this type of foregone conclusion was not the case for many of my friends in an all-girls school, who had no expectation other than to leave school at 16 and get a job somewhere.
I think as you get older you have a more balanced view of the world and appreciate that academia is not for everyone. People have different strengths and weaknesses and are not usually judged on their academic ability in order to be considered a success in their chosen career. And likewise, we should not judge others based on factors which have no bearing on their ability to carry out a job, this includes gender.
For the vast majority of people today, to consider someone unable to do their job based on their gender would be considered ridiculous. However, it isn’t so much the overt discrimination which continues to be such an issue, although this is still happening and is unacceptable, there are at least steps that can be taken for redress. It is the covert, “undercover” or unawareness of using gender to make decisions which in my opinion is still an issue today and I don’t know how we can change this.
According to recent statistics**
The full time gender pay gap is 10% and for those in part time positions this rises to 34.5%.
Approximately 70% of people in national minimum wage jobs are women.
Women make up only 17% board of directors of FTSE 100 companies.
Women are still struggling in the work place to be seen as equal to men, it is as simple as that. Although great strides have been made, somehow women don’t seem to be promoted to as many top positions as men. In my experience it seems that women have to work twice as hard to prove themselves equal to their male counterparts and then struggle to be heard with a voice of authority. It is not a big surprise that a lot of women at the “top” are quite tough and can not be seen to be emotive and sensitive as this is “not what leaders do”.
And yet are we missing a trick? Is this one of our best qualities as women? A good manager surely can be tough when required and have empathy and kindness for their staff without being walked all over. If a male manager was like this, he would be considered a great boss and yet if it was a woman, the empathy and kindness could be considered as a sign of weakness…
I think the solidarity of male only Societies, golf clubs etc. where a lot of business takes place does not help the case of women feeling included and it does not do much to level the playing field. But then I don’t think that women help themselves at times. Although they can be placed in a position where they have to work so hard to be recognised, in many cases the competitive edge required to climb the career ladder means that their female colleagues are viewed as a threat. They do not work together like their male counterparts, they work in isolation and this cycle continues where male colleagues are able to help each other out and up.
The Equalities and Human Rights Commission estimates it will take 70 years at the current rate of progress to see an equal number of female and male directors of FTSE 100 companies.
We need to stop the cycle continuing and start being true to ourselves. But we also need to start working together as women- 70 years is an unacceptably long time to wait for equality.
*19th November 2016 is International Men's Day
Wednesday, 10 February 2016
Tuesday, 9 February 2016
Last night my youngest son, Joe, was busy playing after his dinner. His big brother was practising writing his letters on one of those magnetic boards which wipes clean again (fabulous invention and no mess either!). So in looking up to him, as all three year olds tend to do, he decided he wanted to draw on his board too.
He seems to have a creative streak and enjoy drawing, painting and colouring in. It has been largely scribble and the odd shape to date so my expectations were low as to what I was likely to see…
“Mummy, this is a picture of you! Wait, I’m just finishing the hair…”
I am pleased to say that it is indeed a fabulous picture, I am delighted that he seems to have inherited some artistic ability. Just a shame I look like Herman Munster…
Sunday, 31 January 2016
Wednesday, 20 January 2016
Having finally adjusted my mindset to the positives of motherhood and feeling the baby move a few weeks later, the curve balls that we were to be thrown were far from over... A routine pregnancy blood test following our last holiday abroad as a couple was to change things again. The Fetal Centre at Liverpool Women's Hospital invited us to come in to discuss the test results which had shown a high risk of chromosomal abnormality. In short, our unborn child could have and it turned out did have Down Syndrome...
Fast forward three years and last night was a usual busy evening in the Scott household- trying to get dinner at a reasonable time with a two and a half year old who would rather sing 'Wind the Bobbin Up' than eat his dinner (although dessert is no problem for him funnily enough!), who then proceeds after dinner to empty the contents of the kitchen cupboards all over the floor whilst we try and clear the dishes, put the online food shopping away and try and bake cakes for Tim's work cake sale the next day. Meanwhile our 3 month old baby wanted feeding (again!) which meant a pair of hands less to help with the bath, bottle, bed routine. Nothing unusual there (except we don't bake cakes every night) in our usual battle to maintain these routines and have everyone fed, watered and in bed at an hour that is always later than we'd like. We sound like a normal family and that's what we are- a normal family raising a child with Down Syndrome.
Jake was born in September 2010 with an extra 21st chromosome. This wasn't anyone's fault, it was not hereditary, it was just one of those things... Jake was diagnosed before birth with Down Syndrome and a congenital heart defect which would require open heart surgery before he was 6 months old to close a large hole in his heart (it was more like reconstructing his heart to function normally in reality).
We were initially advised to consider terminating the pregnancy before he was born based on the heart condition (which could be repaired) and his Down Syndrome but decided to continue despite the fact that over 90% of people choose to terminate given this kind of news, a figure which always shocks me.
Jake had a rocky start to life, spending his first week in the Neonatal Intensive Care Unit and has had several stays in Alder Hey Hospital following his heart surgery at 5 months old as he struggled to cope with common viruses as he recovered from the surgery. He is a child who has had quite a few challenges in his short life and continues to amaze us with his determination to overcome them and still keep smiling!
In the recent past, a person with Down Syndrome was considered unable be educated by law and in many cases sent to an institution to live. Today's world is a very different place and we have high hopes for Jake. He attends a normal day nursery which he loves and we hope he will attend mainstream education. So far he is keeping up well with his peers and we hope that this continues. Jake loves to play to an audience and is a popular little boy in his nursery class. We are always surprised by people's response to Jake as he charms people wherever he goes. Before he was born I was scared that people would stare at my baby but today am a very proud parent of two lovely little boys!
Today is World Down Syndrome Day. This the eighth year of this event which aims to bring awareness of Down Syndrome and the second since it was recognised by the United Nations. Jake does not 'suffer from' Down Syndrome, he has an extra 21st chromosome which gives him something special and that's nothing to be scared of.