“What a bunch of selfish stupid people. What kind of life are those kids going to have? No chance of independance, no chance of holding jobs, no chance of normal life. Stuck on disability pension for the rest of their lives …. And I am REFUSING my taxes being spent to pay for the stupidity of their mothers …,” said the delightful Patrick Novak in response to the TV Show, “60 Minutes Australia” who covered a report on NIPT, the controversial test that, in their words, could eliminate Down syndrome.
I’ve stayed quiet on the subject mainly because the response the report got from some of their viewers, left me feeling utterly deflated and that this battle (the battle to get people to see that Down Syndrome is such a small part of Oscar and how we see him) is too hard a one to fight this time. But deciding that staying silent is not really my style and because I have this platform to say my piece, I decided better of it. So here goes…
Before I go on though, another of the comments I read-
“Wait till you still have to give your kid continence care when he’s 50 yrs old and your 85 year old hands find it too hard. Thats what happens to downs syndrome grown ups” was a quote from the equally articulate Lisa De Lace
“For those who want to keep the downs syndrome gene, its like keeping the rectal cancer gene alive” was another gem from her later on in the thread
And a particular favourite of mine, Sarah Marie Miles commented — “What a selfish decision to allow a child, whose quality of life will be no better than a dog, to live”
So here’s the thing.
My first thought was that these people (and believe me there were a lot more) don’t seem to possess a single brain cell between them all. “IndepenDANCE” Patrick? Really??! But that would be me being an arsehole and stooping to their derogatory level right?… So I try to rise above it.
Secondly, referencing the “I’m REFUSING my taxes being spent to pay for the stupidity of their mothers” (one of the most common arguments people seem to raise regarding the fact that someone with DS would cost the country a shed load of money over the years – Disability Living Allowance, Benefits, NHS bills etc etc. I find myself (and again I’m well aware I sound like a total arsehole here), hoping that at some point in their lives, they or perhaps someone close to them, will find themselves needing the NHS or benefits. The arsehole in me, finds myself hoping they’ll have a car crash, end up disabled and need the NHS really badly. Or get so addicted to crack cocaine that they won’t be able to work and will find themselves on benefits. And when I’m feeling like the worst arsehole of all, I find myself wishing, that they one day they might find themselves in a position where they’ll need it all, for the rest of their lives – DLA, the NHS, benefits, the lot… because – How do any of us know if any of us will be struck down with Dementia, Alzheimer’s, the big C tomorrow and need all that money we’ve paid in taxes over the years, and a whole load more? None of us know. And they better hope that karma doesn’t come and bite them on the butt hey.
Oh and by the way, i’m not likening DS to an illness. Just that people with DS are eligible for all of the above because of some of the challenges they face and because it helps them. Helping those who might need more than others is a good thing surely?
My main gripe here though is people are forming opinions without really knowing the facts. Without having met anyone like my Oscar and making a judgement on what they think his life is like or will be in the future…
Yes, having a child with DS comes with its challenges but because of early interventions and the fact that our kids are being born into families where they’re loved and valued (instead of being institutionalised like they once would have been), they’re thriving.
Yes, some children/adults with DS do better than others but in the same way, isn’t that true of those of us considered “typically developing”? Before I had kids I made a living prancing around a stage because, lets face it, some of us were never destined to be brain surgeons. We all have different IQ’s, different levels of intelligence right? We’re all different.
Has it really come to this though? Are the comments that these people left after watching the show, what they really think? Are there really such cold, heartless, narrow minded people in the world, who think it’s ok to say such things? I mean even if they think it? I guess the answer is yes.
Can anything be done to ever change their minds? Probably not.
For the record Australia, and all those other countries, including us here, so hell bent on eliminating Down Syndrome… I really don’t think we ever will. For there will always be those people who choose not to screen. They’ll also be other people like me, who won’t be offered the NIPT (Harmony Test) because in my pregnancy, I was considered Low “Risk” and wouldn’t have been deemed eligable. They wouldn’t have offered it to me because the screening they do, to work out who should have the test and who shouldn’t, isn’t worth the paper it’s written on. They get it wrong. Oh and even if you do have the NIPT and “get the all clear”… they sometimes get that wrong too. So yes, there may be fewer, but they’ll always be people with DS in the world
I would so love for these people commenting, to spend a day with us. To see Oscar for who he is and not just his diagnosis. For them to understand what a huge impact he has on so many people who have the privilege to be around him. A little boy whose life I value for everything he is and everything he has brought to us as a family. He’s not a burden. Far far from it. And if we are ruling someone out on the basis, that as his Mother, i’ll die before him and he’ll be left costing our government too much money, then I think it’s become an even sadder world than I already thought.
I may have said too much here and I may (definitely) have come across as an arsehole (I don’t really wish ill of anyone) but I can’t tell you how much hearing people talk this way about your child, hurts.
Those of you who know me well, will know how much I loathe Soft Play. I can totally appreciate it serves a purpose and for a lot of Mums and Dads out there, they wouldn’t be without it but for me, it’s basically my idea of hell. In my mind, anywhere that involves me crawling around on my hands and knees, in close confined (sometimes smelly) places, shadowing my kids so they don’t get stuck/lost or man handle another kid (Oscar) is, lets face it, never gonna be top of my list to visit. (Sorry to all the soft play owners out there)
So when Alfie, Flo and I were invited to the relaunch of Little Street Frimley this morning (Oscar was at school), an alternative to smelly soft play, I was obviously thrilled none of the above was involved. Little Street opened their doors to local bloggers to see what we thought of their new and improved (and might I say beautifully redecorated) role play centre.
For those of you who have no idea what Little Street is, I should explain. Responding to children’s love of role play, they have created a realistic street, designed with little people in mind. Their play centre features a supermarket, construction site, theatre, beauty parlour, cafe and a newly launched veterinary surgery and air ambulance. Little Street is a scaled down version of a typical town I guess, inspiring children to explore life in the world around them.
We’ve been to Little Street a number of times over the years and it’s without question, always one of our first picks during school holidays. Not only because my three kids love it there, but for me, with the three of them being so small at the moment, I love that it’s a safe and secure environment where I don’t have to worry about them wandering off.
I genuinely think there’s so much to be said for that when you’re a Mum. I don’t think I really thought about it before but when you have two or more children, all of whom are of the age where you can’t really rely on them understanding the importance of safety, having somewhere like Little Street, is a godsend. It offers hour and a half play sessions, parties, school trips and more. You can find their session times and prices here
In talking to the owners Hannah, Shay and Heidi this morning I loved listening to their story. After seeing that the idea was working abroad and realising there was a gap in the market here in the UK, they decided to plough their savings in to the venture. Initially they all had preschool children themselves so making a go of things at first was tough but now that all their kids are at school, they’ve been able to focus their energies on making it one of the most popular attractions amongst local families.
Their drive and ambition has certainly paid off and earlier this year they became a franchise, with NEW Little Streets popping up in West Byfleet and Maidstone, with others launching around the country in the foreseeable future
Little Street were also nominated in the Whatson4juniors awards last year, for the best activity for under-fives and best new activity
Little Street’s Hannah, Shay and Heidi say…
“As parents ourselves, what we love most about Little Street is the educational benefit. Through role play children expand their understanding of themselves and others, it helps them to develop language skills and discover leadership ability. By encouraging social interaction and problem solving it also enables children to gain confidence. Designed with input from Early Years Practitioners, we have also incorporated other learning opportunities for children throughout the play centre, including shapes, colours, numbers, puzzles and language”
I should also mention from an SEN point of view they have always welcomed Oscar with open arms. The staff are enagaing and friendly and if Oscar’s had one of his tasmanian devil moments (more so when he was little) and the contents of the shop have gone flying, their patience and understanding have not gone unnoticed. They have recently launched “quieter sessions” suitable for children with autism, hearing impairments and sensory processing difficulties, which of course is very close to my heart.
I would have always recommended Little Street before today but after seeing Alfie and Flo and all the other little ones there earlier, I cannot speak highly enough of the place. I think the pictures speak a thousand words in that they both had the best time. I didn’t come out a sweaty mess after manipulating my body into weird and wonderful positions to keep up with my 4, 3 and 1 year olds. I didn’t spend the whole time thinking “I can see Oscar but i’ve lost Alfie and Flo”… I was able to enjoy my coffee and cake in peace, chatting to other Mummy bloggers. Everyone’s a winner right.
Thanks for having us Little Street
“People will forget what you said, people will forget what you did, but people will never forget how you made them feel”
This isn’t a birth story. I’ve written one of those way back when. It’s not even about the moment we found out, that the paediatrician that checked Oscar over, suspected he had Down Syndrome. I’ve talked about the language she used. The fact that she said she was sorry with a crestfallen expression. I’ve talked about how it felt like this news, was in her mind, the worst thing that could have possibly happened to us. But this isn’t about that. This is about recognising, that in spite of all of the above, there were some really significant people who had a huge impact on our birth experience and after care, that at the time, I don’t think I gave enough credit too. People that perhaps some might argue, were “just doing their job” but they’re people who in my mind, went that extra mile for me.
I talk about them because I think it’s so important to recognise how poignant a job these guys have. Not only do they have your welfare and your baby’s life in their hands, it’s become apparent to me, having spoken through my blog to so many women who’ve come into contact with good (and bad) midwives, just how influential a position these women and men are in.
Their approach and attitude, can shape the way you feel about your baby, should that baby be given a pre or postnatal diagnosis of Down Syndrome or any other disability for that matter. But on the flip side. To show when things aren’t handled, some might consider, the right way, it’s about recognising some of the shameful experiences couples have had and how they perhaps, could have been prevented.
“He looks funny” She said
“It’s bad news” said another
“You have a 1:38 risk that the baby has Down Syndrome so I’ve booked you in for an amnio” Said the next
“She looks a bit Downsy to me” She remarked
“He doesn’t look Down Syndrome” another commented
“Both myself and the student midwife went out after you gave birth and had a good old cry”
These comments, ashamedly, aren’t made up. When I asked a handful of my readers if they’d mind sharing some of the experiences they’d had with their midwives, amongst the positive stories were these. You’re probably thinking that these comments must have been made 50+ years ago because surely midwives, being in the profession they’re in, in this day and age, would have the foresight to see that it may be deemed inappropriate to say things like that? But alas no. All of these comments have been made within the last decade.
Although we had the issue with the paediatrician, who i’m pretty certain has absolutely no idea there’s a whole blog title dedicated to her faux pas (I should probably mention it one day… “Have you heard of the blog “Dpn’t be Sorry”? Well….”) on the whole our experience leading up to and there after, was good.
It was 6th July 2012 when I went to my routine 40 week check up at my local surgery, with my midwife Marlene. I remember the day well. It was really hot and after my appointment I was looking forward to heading home to my sofa to watch Andy Murray play at Wimbledon. I was relaxed, I felt calm. Although I was looking forward to meeting my little man, I wasn’t too uncomfortable at that point (unlike my two pregnancies that followed) so was more than happy to let nature take its course, feeling assured that everything would be ok. There really was no indication that that day was going to lead me down a very different path to the one I assumed I was on. I had seen Marlene a few times. I remember the first time I saw her, asking if I could come and see her again. A clear indication that in hindsight, I must have had a feeling she was a good person.
This particular day she took my blood pressure, checked my urine and then asked me to get up on the bed for her to check the baby’s heartbeat. She was talking to me the whole time, but then just as she found the heartbeat she stopped. Not unusual, as presumably they have to count the beats per minute and listen carefully for anything untoward but there was something about the length of time she listened, that I sensed might indicate all was not well. Calm as you like she asked me what I was doing that afternoon and when I said nothing in particular, just watching Andy on TV she said she thought it’d be a good idea if I headed up to the local hospital to be monitored. She didn’t seem overly worried and because of this, I wasn’t overly worried either.
Without going into the details… it turns out, we probably should have been a bit worried. By the time I got to the hospital they could tell that Oscar was barely moving and his heart rate was significantly low. I was induced but before I even started labour, his heart rate dropped so dangerously low (60 bmp) that they rushed me in for a C section under General Anaesthetic and the rest as they say, is history.
Marlene, my midwife. The lady I attribute as being one of the first, in a line of people, who not only saved my baby that day but in doing so, saved me.
There was also the midwife, who the night Oscar was born, sounded the alarm. Who saw that Oscar’s heart rate had dropped so low, who knew to push that button. There was the nurse called Sarah who took Oscar from me the morning after he was born. He needed to go to NICU to be put on oxygen and to monitor the holes in his heart… but she reassured me she would personally look after him and told me (over and over again, every time I saw her in fact) that he was beautiful and that he had a special place in her heart. And one of the midwives who I remember best. Michelle. The lady who was on duty later that evening. It was now the middle of the night. Chris, having had no sleep had gone home and they’d given me my own private room, which I couldn’t quite work out was to give me my privacy away from the other mummies on the ward with their newborn babies or because they didn’t quite know what to say or how to deal with me. A lot of the midwives on that shift seemed to be avoiding me or didn’t seem to know what to say. But Michelle was different. I remember late into the night, her coming in to check on me and sitting with me for a while. She’d found me sobbing in to my pillow, wallowing in my own self pity and in the nicest possible way, told me in no uncertain terms to get a grip. We talked that night about her little girl. How she was into gymnastics and how one day she thought she’d be good enough to do it at national level. I knew what she was doing. It was total distraction technique. Let’s talk to the mentalist in the bed about my kid so she forgets that her life has just taken a very different turn. It worked to a point. But more than all that she reassured me that I would indeed love him, despite what I was thinking and feeling at that point and that we would be ok, because honestly? There was no other choice but to be. She was a straight talking, strong woman and although the journey to acceptance was a long one for me, Michelle was probably one of the first people to make me sit up and dry my tears. I didn’t see her again until just a few weeks before I had Alfie. Oscar and I were sat in Costa coffee and she was sat a few tables away with her daughter. She didn’t recognise us at first. But as she went to walk past she stopped and started talking to me about Oscar, saying how gorgeous he was. I asked her if she remembered me and as I started explaining who I was, I saw, she’d recalled. I told her the impact she’d had on me that night and how much it had meant to me that she’d taken time out to talk to me. Judging by the smiles through her tears, I think she was pretty chuffed. I saw her a few weeks later when I had Alfie and she hadn’t changed a bit. I felt some of the other midwives treated me like damaged goods. You know, “That’s that woman whose first baby had Downs” type thing. But not Michelle. I loved that about her. She treated me exactly the same as she had before.
But all too often I hear other peoples stories, where their experiences of midwives have sadly not been ideal. We know it’s not just medical professionals, it’s definitely society as whole, but I truly believe midwives have a responsibility to new parents to educate themselves in what having a baby with Down Syndrome actually means v’s what they think it means in their minds.
So if i had, like I had with the GP’s the other week, just 20 minutes or so in a room with a bunch of midwives. Whether they be trainees finding their feet or those midwives who’ve worked in the profession from a few months up to 40+ years… here’s a few things i’d ask them
I’d ask them to please celebrate the arrival of this baby, as you would do any other. To offer your congratulations and to hold the baby, treating this precious bundle just the same as the next. Don’t just hand these new parents a handful of crumpled leaflets that have been squirrelled away at the back of a drawer… Do research yourself. It only takes a few minutes to find out where the nearest local support group is, so tell them about them for when they feel they might be ready. In those early few days new parents don’t want to know too much medical stuff, so don’t overload them with statistics and health complications. Allow them to find out for themselves as time goes on. While I’m sure having a baby born with Down Syndrome is not that common an occurrence at your hospital and you/the junior doctors mightn’t have ever come across such a “case”, please please PLEASE don’t treat this new baby like an animal in a zoo – Please no groups of such professionals visiting to “spot the markers”. It feels, to a new Mum, just so uncalled for. Knowing how vulnerable I felt lying there in that hospital post birth and knowing how much focus I put on your positivity (If midwives were positive, then it can’t be all bad right?) I’d ask them to focus on the individuality of each baby and disregard any generalisations about the diagnosis they’ve been given. But above all, If I could ask one thing of them, it’s that you smile at us. For nobody’s died right?
I appreciate that it’s protocol for the Doctors to be delivering the suspected DS diagnosis and it’s not the job of the midwife, but how that midwife acts around a new mum, really is so so important. At the end of my talk last week, I asked the trainee GP’s if they had any questions for me. There was a pause while they thought, then slowly a tentative hand was raised by a lady sat in the from row. She asked
“If you were so unhappy with the way Oscar’s diagnosis was delivered, can I ask what you would have wanted that paediatrician to have said please”
I’m pretty sure I garbled something along the lines of the below. Probably nowhere near as together as this hopefully comes across but I think they got the general gist. If i’d had thetime to really think about it, (for I truly believe it’s something that needs to be thought long and hard about), I think I would have replied with the following…
“I’d ask that first you say congratulations and take the time to really look at the baby in my arms. I’d ask that you comment on how beautiful our baby is remembering that we made him or her. I’d ask that you say that you have some news to share with us, that perhaps might not have been the news we’d been expecting but that all will be ok. I’d ask that when you say that you suspect our baby has Down Syndrome, that you don’t look as though the world has ended. Give us hope. Say that you will help us with any information we might need and link us to the right support. But finally, over and above everything else, tell us that all our baby really needs right now, is our love… That nothing else, in that moment, matters more than that”
Oh and one last thing to ask that Doctor or Midwife… When the lady you’re looking after, goes on to have another baby after they’ve had one born with Down Syndrome. Don’t make it into a big “thing”. Don’t assume everyone is going to want the screening or the tests. Every woman is an individual and every one of them will make that choice for themselves.
Some of you will know that we use Oxo Tot’s Twist Top Water Bottle for Oscar’s drinks and can’t speak highly enough of the company. So we were thrilled when they asked us if we’d like to try out some of their newer products.
First off was the Oxo Tot Perch Grey Booster Seat with Straps. To be honest with you, we’ve used booster seats in the past with my three and invariably we’ve found that throughout the duration of the meal, they’ve slumped right down and they haven’t given them the support they’ve needed. So I was pleasantly surprised to find that the Perch Booster Seat with it’s 3 point harness and 2 chair straps to keep the seat firmly in place, was a huge success. We tried Flo in it first, as she definitely needs to be strapped in at just 21 months old and she loved it. Being the youngest of three, she’s for the most part confined to her high chair so this seat gave her a new found independence, all the while keeping her safe. The seat is recommended for little ones 15 months + and is suitable for children up to 33lbs (15kg). Alfie (aged 3) was able to sit on it too but without the straps. Hevwas thrilled to sit in “his big boys chair” but was able to reach the table without needing to kneel up the entire lunchtime. It has a fab little backrest and the seat itself is soft cushioned so I have no doubt any little person would be happy “perched” (I went there) on this.
I found the straps easy to adjust, which was quite the relief, as I’m probably THE least technical person when it comes to new gadgets/kit. There’s also excess strap storage under the cushion which is great, as I can only presume it could be fitted to most size chairs. The fact that it’s extremely lightweight and compact in size, means it’ll travel well and could be brought with, if you visited a restaurant and didn’t want to risk using their manky old highchairs (I’m sure it’s not the case everywhere… but why are highchairs in restaurants so gross?).
Oh and I totally googled other reviews to see what other people thought (as you do) and on Amazon it got nothing but 5 Star reviews. Twinned with the fact that the product looks really cool and wouldn’t look out of place in a stylish kitchen* (if I actually had one*) I’d say most Mums would definitely Big up the Booster!
Next was the Oxo Tot Roll Up Bib in grey (6 months +). Being Machine Washable (Yes you did read that right… MACHINE WASHABLE PEPS!!!) it was winning in my eyes from the get go. Comfortable to wear and wipe clean (seriously, they can’t actually go wrong), I was really impressed with this bib. All to often bibs are the wrong type of material and last a total of 5 minutes or are just really tacky looking and stain. The fact that it rolls up for storage and doesn’t lose it’s shape is brilliant so a definite must for all mucky/dribbly toddlers for sure (see photo of Flo drooling for Great Britain)
Finally, the ever so handy Oxo Tot 2-in-1 Wipes Dispenser with Nappy Pouch (Also known as a diaper to anyone over the pond). How brilliant? It holds up to 5 nappies at a time so you’re never gonna be caught short and it keeps up to 20 wipes moist. It has a handy strap to hang on the buggy or simply to use as a carry handle so ultimately means no big old bulky baby changing bag #winning
So in a nutshell, Oxo Tot are still our favs. Highly recommended to anyone wanting stylish and cool mixed with practical and handy. Products are obviously available on a number of sites but here’s the link to Oxo Tot should you want to take a look. Thanks for reading
They say that when you have a child, you become their biggest and fiercest protector. They also say the hardest part of being a parent, is watching your child go through something really tough and not being able to fix it. I think “they”, whoever they might have been, had a point.
Early this morning, I was approached by Channel 5 News to go up to their studio in London to talk about whether people with learning disabilities should be allowed to earn less than the minimum wage. The reason they asked, was because today an article has been published in The Spectator Magazine, written by a lady called Rosa Monckton who has a daughter, named Domenica who, like Oscar, has Down Syndrome.
Last year Rosa set up the charity – Team Domenica. The purpose of the charity is to get young adults with learning disabilities into employment because she found, as have so many other parents, that there was nothing for her child to do to once she had left college. The charity has 21 trainees and it runs a year’s course in supported employment, in partnership with Brighton City College. They also have a training café which is open to the public, where young men and women can hone their practical and social skills. They have an on-site business, where they weigh and package spices, stick on labels and parcel up the goods. Their kitchen is also a mini-business: they select items they would like to see sold in the café, make the shopping list, do the shopping, cook, price up and deliver to the café. But Rosa is asking, after they’ve completed their course, what happens next?
There are times that I wonder if perceptions will ever change. Whether the message is getting through. If blogs like mine really make a difference or not. Don’t get me wrong, it restores a little faith to know, that if one or two people every once in a while, look at this blog and page and perhaps don’t feel like having a baby with Down Syndrome would be the worst thing to happen to them… well, then perhaps the message IS getting through… slowly.
I posted earlier this week about the fact that if a woman finds out late into her pregnancy that she is expecting a baby with Down Syndrome, it is actually legal in the UK for her to have a termination up to 40 weeks. Not because this baby won’t live outside the womb. Not because this baby is expected to have little or no quality of life. Simply because they have Down Syndrome.
I had talked about this previously and it was met for the most part with utter shock and disbelief. Now I’m not kidding myself here. The people that follow my page, are obviously going to be people that want to know more about Down Syndrome. Perhaps they have someone in their lives who happens to have Down Syndrome – a son, daughter, niece, nephew, grandchild, a friend’s child etc. These people are obviously going to be pro Down Syndrome and not haters… you’d have hoped.
But then, there in black and white as I scrolled down to look at the comments under this particular piece, was a few lines from a lady named Sally*. Sally had herself terminated her baby at 12 weeks because she had found out in her first pregnancy that she was carrying a baby who happened to have Down Syndrome. It’s not the first time someone has come forward, openly and honestly telling me, that they chose to terminate. I have in the past commended their bravery. I’m not altogether sure I would be man enough to confess, especially not to a woman who has a child with Down Syndrome herself but when they have, I have always said that I have respected their right to choose. Had I been in their position and we found out Oscar had Down Syndrome prior to being born, I genuinely don’t know how I would have felt. So I’ve respected their wishes and just thanked goodness, that I didn’t have that choice to make.
But when Sally, the lady who’d come forward to tell me she had aborted her baby because she’d had Down Syndrome, went on to say that she had a 16 year old niece with Down Syndrome, my heart felt heavy. Really, really heavy. She said that Amelia* (her niece) had been ‘riddled with issues’ and that at best they could expect another 10 years before she passed away and even though this lady said she was devastated at the thought of losing her niece, the bottom line I got from her message, was that she didn’t want a child with Down Syndrome for herself.
She went on to justify her reasons – She said that she couldn’t bear the thought of outliving her child and having to bury them. That she knew she wouldn’t be able to cope with the bullies. And that she’d find it heart breaking that she’d have to tell her daughter that she wouldn’t be able to have a child of her own.
I was puzzled. Did this lady definitively KNOW that her daughter would have health issues? Did she not know now that people with Down Syndrome are living longer, fuller lives and that perhaps her baby could have outlived her? Bullies? Really? I mean I understand the sadness not being able to have child might bring a person… But to terminate them on the basis that they might be sad they couldn’t have a baby? REALLY?
We had a couple of messages back and forth and I asked her if it had been flagged up that her baby had had major health issues? I made the assumption that this must have been the case. I try desperately hard not to judge and couldn’t even begin to imagine the impact these health issues have had on her or her family but suddenly I was wondering how Amelia’s mother felt in all this. If she had her time again, would she have chosen terminate her now 16 year old daughter because she had been ‘riddled with issues’ or was this just Sally, looking at her niece and thinking, do you know what, I could do without that?
She didn’t answer my question about whether it had been found that her unborn child had had major health issues. I am suspecting, as she didn’t answer, that there were probably none. She also went on to say that they tried again and now have an ‘amazing healthy child’, which lead me to believe that in making that statement, she probably considers a child with Down Syndrome, unhealthy. She said that it was her decision and she doesn’t for a second regret it. She said that she doesn’t ever tell anyone about any of this and that she was now going to delete the comments. Which she did.
I sat for a while at my laptop, thinking. I couldn’t work out why I felt so sad. It actually wasn’t about the termination. I fully understand that some people think they won’t be able to cope with a child with Down Syndrome. They’re scared and they don’t think they can handle it. I get that. But I think I felt sad mostly because she has someone with DS in her life and yet she still chose to make the decision she did. I think perhaps I felt sad because the very ethos of this page, is that if someone could spend just a few minutes in Oscar’s company, they might be swayed in thinking that actually, Down Syndrome’s not that big a deal and if anything, he’s a pretty cool little guy to be around. And right there, in black and white, she was dispelling that very notion.
But also the ‘amazing healthy child’ was a statement that didn’t sit right with me. It felt like she was saying that a child with DS couldn’t be either amazing or healthy, which just isn’t true. It felt like she was saying that since having this ‘amazing healthy child’ she’d hit the jackpot and that, for some reason, hurt me.
One of her final messages to me was that once they found out she had tested positive for Down Syndrome, they had decided not to find out how severe it would be. In that very sentence I realised she knew very little about Down Syndrome, for most of us know there is no test that can tell you when a baby’s in the womb how severe a child with DS will be, any more than it can predict if Alfie or Flo will go to Oxford university or become coke addicts with no jobs and end up in prison.
I told her I was glad she didn’t regret her decision and I wished her all the best. I had nothing more to say.
In The Times newspaper last weekend there was an article written about how parents of disabled children had cost the NHS £70 million over the last 5 years. The reason being was because, had they known of the abnormalities earlier, they would have had abortions. The bulk of the pay-outs were to parents who claimed that antenatal screening failed to warn them of the risk their baby would be born with a disability and therefore they made claims, due to the hospitals negligence. Now I don’t doubt that some of the hospitals were accountable for missing things in the screening or scans. I’m not denying that some of the people claiming have been through huge financial strain because of the extent on these children’s disabilities. But the article talked of parents of children with Down Syndrome and while I understand the initial feelings of needing someone to blame, once that baby’s been born, is there really a need to point the finger? Are the parents THAT cross that things MAY have been missed in the scans and screening that they go to these lengths? To me, it says these parents aren’t happy to have their child in their life. That they see them as a strain, as a burden or that perhaps they’re not wanted after all, and again, that makes me very sad.
So there are times, like when I read the article in newspaper and I hear from Sally with her 16 year old niece, that I wonder if my job (and many others out there) as an ambassador for our kids, is just too high a mountain to climb. If perceptions will ever really change, or if we’re just fighting a battle that can never really be won. I guess if we asked anyone outright if they wanted to bear a child with Down Syndrome for their life, I’m guessing I’d be met with a resounding no. But people currently in that life? People living with a child of their own, a sibling, a grandchild, a niece, a nephew with Down Syndrome? I’d have hoped they would say that the reality isn’t nearly as bad at all.
Dr Brian Stotko conducted a study (2011) and asked 2,044 parents who have a child with Down Syndrome some fundamental questions. 99% reported they loved their son or daughter and 79% thought their outlook on life was more positive because of their son or daughter with Down Syndrome (this 79% is a strong message that they weren’t just happy but that their life was MORE positive). Amongst siblings ages 12 and older, 97% expressed feelings of pride about their brother or sister. And only 4% of this parents surveyed, regretted having their son or daughter.
Paul Shane Spear once said “As one person I cannot change the world, but I can change the world of one person”.
With every new parent of a child with Down Syndrome that finds themselves reading this blog or page, whether they find out in pregnancy or post birth, I’m pretty sure Oscar’s doing just that for them and if that’s all his does in his lifetime, well that’s more than I could ever have imagined. And the lady with her niece? I genuinely hope she’s happy.
* Names have been changed to protect identities