'Change The Box' for People With Down Syndrome in the Paralympics

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I was so excited when Mr. Andrew Boys from London asked me to speak at The United Nations in New York for World Down Syndrome Day last March. I was able to tell the world about something I feel is very unfair and needs to be changed. I want the International Paralympic Committee to add a new category of Intellectual Impairment to the Paralympics, and I need your help!

The Paralympics divides athletes into boxes. Boxes one through 10 are different types of physical impairments, 11 through 13 are visual impairments and 14 is intellectual impairment.

Down syndrome just gets thrown into the big “intellectual impairment” box. This box is for people with an IQ of less than 75 — that’s the qualifier. The issue is, we often have physical issues: muscle-tone, joint, visual, heart or thyroid issues plus being very short. That extra chromosome is part of every cell in our body. By making us compete for slots on the team against able-bodied, tall, strong athletes, we are not really included, in reality we are excluded, so you will never see a swimmer with Down syndrome in the Paralympics however hard they train. A simple test is all you need to tell you we have both, physical and intellectual impairments. There are around 8 million of us around the world. I think we need our own box! That seems fair. It would give us something to work for and train like a champion. It would give us role models we can relate to.

When I was at the UN I learned in many countries people are told to just leave their baby with Down syndrome at the hospital. They get hidden away and people think they can’t do anything. That is so sad, can you believe it? Imagine if people in those countries saw swimmers with Down syndrome winning Olympic medals. Would they still think we were worth nothing?

Australians like me love sport, and they like a fair go, but I don’t think we’re getting one. I am asking people all over the world to help me change this. Please join me on my Facebook page “Change the Box” and sign and share my petition. Share with as many people as you can.

It’s OK to put us in a box — but please make it our own box, and definitely one with no lid! Why should it have no lid? Because we may just want to fly! Let’s do this.

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A World Without My Beautiful Little Boy With Down Syndrome?

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We did not want to have too much of an age gap between our oldest daughter, Sophie, and a second child. It took a long time to conceive Sophie, and I was worried it would take just as long a second time around. Besides, we weren’t getting any younger. I was in absolute disbelief (in a good way) when we were expecting just a few months after trying.

The day after the 14-week scan, which fell on a Thursday, we received a phone call from the Princess Anne Hospital, Southampton, saying our scan had presented — and I forgot the exact wording here — a one in three chance of the baby having Down syndrome. Apparently, the sonographer had also seen something that didn’t look quite right with the chin — which in itself didn’t worry her — but with the nuchal translucency neck fold and Liz’s blood results, they felt the information deserved a phone call on a Friday afternoon. The link midwife (for diagnoses of chromosomal abnormalities and the like) wanted to invite us for a scan with fetal medicine on Monday morning; hence the phone call late on a Friday. We had a brief phone conversation and she was extremely helpful and informative. She ran through some of our options, which included us doing nothing, but we decided we should take advantage of being able to see Mr. Howe (consultant) in fetal medicine.

The scan showed up some cystic hygromas — something that is symptomatic of chromosomal “abnormalities.” This, along with the other markers, presented a potential of various conditions, not just Down syndrome. Both the link midwife and Mr. Howe spent time talking through various options with us — one of these was termination, but it was put forward as an option only, and in my mind anyway, not something that was pushed onto us. The noninvasive prenatal screening test (NIPT) seemed like a really sensible test to take — there was no risk of miscarriage and whatever the result, it would give us perspective, along with a chance to prepare both mentally and physically. So blood was taken there and then, and we would have the results back by the end of the week. I even starting teaching Sophie mackaton in preparation of her potentially being able to communicate with her younger brother more easily.

I think we had prepared for a positive test already — we didn’t speak much about it that week, but everything seemed calm between us and we were still very happy that our second child was on its way. We had already asked the hospital to phone us as soon as they had the results back, and they called on Thursday (a very quick turnaround I thought) — the test was positive. The midwife spoke to us for a while on the phone, told us what would happen from then on, reassured us we would have the same midwife throughout the pregnancy, and made it clear she was there should we need anything. In fact, the community midwife phoned the very next day and paid us weekly visits up until two weeks after the birth. She was absolutely amazing and would often fit us in after a hectic day. The news certainly didn’t come as a shock to me, and I think Liz handled it extremely well also. I have volunteered and worked with children and adults with physical and learning disabilities most of my adult life, and I felt blessed and lucky this would be our life. I felt I would be around company who doesn’t discriminate, judge, give to receive and who can love unconditionally.

So from that point on, we felt in the safest possible hands. There are so many things I didn’t know about Down syndrome — more so the physical side of things — and I think the hospital was clever and sensitive about how much, and when, information was delivered to us. We had scans at weeks 20, 28, 34 and 38. Each time, they spent up to two hours with us, bringing over a cardiac pediatrician for a second opinion on the heart to identify any potential congenital defects, and debriefing us at the end of each scan. It didn’t seem they were just doing their job, just fulfilling the Hippocratic oath that they had signed, it seemed as though they really cared and wanted to see the best for us and  for our son, no matter how many chromosomes he has. At the 38-week scan, we formulated a plan of being induced at week 39 if nothing happened before.

We were due in on a Thursday for induction (something I’ve been told is rather unpleasant for a woman). Luckily no one had given baby that memo, and labor started in the early hours of Wednesday morning. Sophie was out within four hours from start to finish, so we were told we needed to get into hospital as soon as contractions started. I phoned the labor line and they were incredibly helpful — making us feel we were in safe hands. They were expecting us (see what I did there) when we arrived and took us quickly, but calmly, to our room. Liz was hooked up to a wireless monitor to check the baby’s heart-rate, but other than that, everything else was like the first time around. Jack Denis Miller was born at 7:32 a.m. on that morning at the amazing Princess Anne Hospital in Southampton. We were over the moon at a safe and uneventful delivery of our precious little boy.

For the following two days in hospital, we received what I believed to be, the best possible care. We were given our own room — something that the midwives arranged for us during the birth — which helped loads. Jack had his heart scan on the first day — we weren’t expecting anything serious as the fetal scans had only showed a potential ventricular septum defect — but still a worry nonetheless. A midwife went with me downstairs to the neonatal ward and made sure Jack’s every need was catered for. She didn’t stop stroking his face, talking to him and making sure he was comfortable. The bed was at a really awkward angle and, although clearly in an uncomfortable position (I know I was), she didn’t stop holding him. The second thing that bowled me over was when the pediatrician came in the room to tell us the results of the scan — he came bounding in the room, clapping his hands together telling us of the good news (completely clear). He was genuinely happy for us.

I managed to watch Sally Phillip’s documentary, “A World Without Down’s Syndrome,” on Thursday night (I wasn’t allowed to stay on the ward). It was probably best I watched it on my own, as it was heartfelt, emotional, visceral and so soon after the birth. There were many issues in the documentary that I found extremely abhorrent, challenging and, if I am truthful, I basically just didn’t understand. I truly believe that education is the way forward with so many things in life. To take such a backward step and operate basic eugenics seems to be so primitive. Maybe people don’t realize the positive impact someone with learning disabilities can have on other people’s lives. If we keep looking for ways to not help other people, then I worry what will become of this world we live in. I found it tough to listen to what medical staff at various hospitals said to women who had received a diagnosis of Down syndrome. Our experience had been a really positive one and I really hoped this was the norm, however, I am not that naive to actually believe it. I — and I hope many of you reading this — will live in hope that the NIPT can lead to parents making informed choices, without prejudice or pressure, and in such a way that all the positives of Down syndrome are made known. I know I don’t want to live in a world without Down’s syndrome, it would mean being without my beautiful little boy. I am excited to see what the world will bring for him and what he can bring to the world.

Follow this journey at Don’t Be Sorry

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Why I Told My Son About His Brother's Down Syndrome Diagnosis

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Within the Down syndrome online community I’ve heard the question, “How and when should I tell my children their sibling has Down syndrome?” There isn’t a right or wrong answer, but I am proud of the way we have handled this situation for our family.

We’re a pretty open book in our house, we talk about anything and everything. It has always been important to me my children feel they can ask me anything. I want me or my husband to be who they turn to when they need advice or guidance. So when we suspected River had Down syndrome, it never even crossed my mind maybe we shouldn’t tell his brother Skyler, who was then 3 1/2 years old. Skyler is part of our team, which meant we were in this together. The serious medical conversations or worries we had happened when he was in bed.

When we sat in the doctor’s surgery and River was diagnosed at 6 months old, Skyler was right there by our side. It might surprise people because he was so young, but we didn’t see receiving the diagnosis as a terrible occasion. I’d suspected River had Down syndrome for a while and we were at peace with it. Also, we felt Skyler could understand — to an extent — what was going on.

When we explained to Skyler his brother, River, had Down syndrome and what the diagnosis meant, it was surprisingly easy. Children seem to be amazingly accepting; for Skyler, his brother having Down syndrome was not much different from the fact he also had brown eyes. It just didn’t seem to matter. We explained Down syndrome in age-appropriate ways; we talked about differences, and that River would probably learn things a bit slower than other children. I then told Skyler how important his job was as River’s big brother, how he could help him and teach him, support him and cheer him on. These are all things I watch him do; he is a wonderful big brother and I couldn’t have asked for more.

Skyler is now 5 years old and it appears Down syndrome is still not a big deal to him, “Mum, River having Down syndrome is not a big deal. But if he’d been born a girl, now that would have been a problem!” He openly asks questions and loves to talk about River and what he is achieving. He also loves hearing about other children with Down syndrome and seeing pictures online. I wonder if it’s when we start to become adults that our attitudes change. I wonder if this is when we start to focus on differences, when we become prejudiced and keep our eyes closed to anyone who might be different. Children seem to care more about someone being their family or their friends. In my opinion, when children notice differences they don’t seem to hold them as important. To me, the innocence of children is quite remarkable. I hope by being open and honest with Skyler from the beginning, he’ll carry those qualities with him as he becomes a man.

Some people might not want to mention Down syndrome until their children are older because they don’t want them to see their sibling as “different.” They want the siblings to see their brother or sister and not the diagnosis. That’s OK. For me, personally, I wanted Skyler to know about Down syndrome because it is part of who River is.

I’ve never heard Skyler refer to his brother by the diagnosis, not once. To him, River is just River.

If I had not told Skyler his brother had Down syndrome, I think he would have worked it out for himself. That is something I didn’t want to happen, along with him hearing it from someone else at school or overhearing a conversation. Kids are more aware than we give them credit for, and I wanted to be the person who had this discussion with my son.

I think it would have been difficult if we were not open about River’s diagnosis. I’m so proud of who my son is, proud he has Down syndrome and I don’t see it as a negative. This is why we talk about it in our everyday life, because it is a part of our everyday life.

I think Skyler has benefited from having River as a brother even though he is only 5 years old. I imagine he will be an amazing grown-up. He is kind, patient, loving and accepting. He really does have a big heart. He is River’s biggest supporter, always the one cheering the loudest. River loves him so much. They have a bond I hope will always be there.

I don’t believe Skyler knowing his brother has Down syndrome has had negative implications. I imagine it is our children who are going to make this world a more accepting place, a place where being different is beautiful and not something negative. Hopefully, a place where being different isn’t a big deal. In my opinion it is through our children that we can create an inclusive society where everyone is exactly who they were meant to be, exactly who they want to be.

I would encourage you to talk to your children. Have open and honest discussions and allow them to ask questions without any judgment. Teach them differences are nothing to be afraid of, and nobody is superior to anyone else due to ability, race, religion or sexuality. And I believe this is equally valid for parents who don’t have children with disabilities — talk to your children. Allow them to participate in situations where they get to hang out with people who are different from them. Teach them about equality and acceptance. Change can happen if we all do our part.

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Why I Treasure the 'Messy Days' as Mother of a Child With Down Syndrome

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These are the messy years of motherhood for me.

Strips of paper with scribbles on them are strewn about the house. So are wet socks, dirty diapers, overly-loved books, and LEGOs.

My three vivacious children create such a constant eruption of clatter that the neighbor often comments on the chaos.

These may also be some of the most magical years of motherhood.

My type-A personality and independent spirit sometimes prevents me from fully embracing the mess that is motherhood. Still, I’m starting to realize my magical days may be numbered.

Our son, Troy, has Down syndrome.

We talk about Down syndrome often in passing, but it enjoys a backseat to the wildness of having three kids under 5 years old.

Troy’s typical twin brother, Hunter, seems immune to the term. Our baby girl, Cora, blissfully loves and hates Troy in any given moment throughout the day.

We live in a bubble. A safe and simple safe-space.

In our day-to-day life, no one seems to care about Down syndrome.

We love Troy; he loves us. It’s that simple.

But children grow, and life gets complicated. Down syndrome morphs into school placement, IEPs, LRE, FAPE, inclusion or exclusion. Kids question. Teachers negotiate. Parents complain. Our family bubble takes on a slow leak.

So this Mother’s Day I wish to cherish and immortalize these days.

I wish to remember these days as I fight to have Troy included in school, community, and work. The simple, messy days where everyone is ignorant to the brutal world that sometimes overtakes unique families like ours.

These are the days!

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Thinkstock photo by Yaruta.

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Fixing the System Against Down Syndrome Prenatal Testing

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The proposal last autumn to introduce the non-invasive prenatal test for Down syndrome, known as NIPT, on the UK’s National Health Service from 2018 has sparked a reaction within both the Down syndrome and the medical communities. Creators and many medics hail the test as offering women the chance to know with 99 percent certainty if their baby will be born with the genetic condition, while avoiding the previous invasive test. Reactions to the news have been both positive and negative, but also seem to be largely divided into two main groups: those with medical experience and those with personal experience of Down syndrome.

One of the allegedly major benefits of the NIPT is that mothers to be will know with almost 100 percent accuracy if their baby has Down syndrome, without the risks associated with the current amniocentesis test. Amniocentesis involves taking a sample of the amniotic fluid around the baby, not only is it less accurate, but it also carries a chance of inducing a miscarriage. The creators of NIPT argue that thanks to the availability of the new test, women will no longer have to take this risk. Yet, women were never forced to undergo this test, it has always been optional. However, the high numbers of women opting for it, despite the risk, demonstrates how a one percent chance of losing the baby is worth taking in order to be sure if the baby has Down syndrome.

Defenders of NIPT have argued there’s no evidence its introduction will lead to an increase in the termination of Down syndrome pregnancies, yet a large percentage of mothers whose babies are identified as having Down syndrome using the former prenatal test decided to terminate their pregnancy. In Iceland, where the test is already available, the termination rate is now 100 percent. There have been 3,213 abortions carried out on grounds of disability since 2015 alone, 689 of these were Down syndrome cases. Surely this is evidence enough that if more mothers are able to determine risk-free if their child has the condition, the number of babies born with Down syndrome each year most likely will begin to decline. The fact that 230 of these terminations were carried out after 24 weeks, the usual cut-off point for an abortion in the case of a non-disabled baby —  a 271 percent increase since 1995 — demonstrates the lack of equality disabled people have even before birth.

Leading part of the anti-NIPT campaign is the actor, comedian and mother of a boy with Down syndrome, Sally Phillips (best known as Tilly in BBC’s Miranda). She created the documentary “A World without Down’s syndrome?” which aired on BB2 last year in the hopes of offering people a new stance on Down syndrome and disability in general. The program has been highly praised, particularly by the Down syndrome community. But it has also received some criticism, namely for, “glorifying” disability or evoking guilt from mothers who had already aborted a baby with Down syndrome. One critic said that Philipps’ take on Down syndrome was overly positive and unrepresentative given that her son was “high-functioning.” Yet, why should that be an issue? We should not be determining whether we abort a baby based on their so-called “functioning level.” Once we start deciding who we do and do not want in our society, we begin to enter very difficult territory.

This is also a common issue with people on the autism spectrum, which I myself am on. Many scientists are desperate to find a “cure” for the condition, best referred to as a”‘neurotype,” while many people who are actually on the spectrum — including me — are against this. The common argument against this is that autistic people are “high functioning” and therefore not “in need” of this unfeasible “cure.” Yet, how can we ever decide which disabilities need “curing” and why is our society so obsessed with “curing” or eradicating difference? The voices of people actually affected by these issues are constantly ignored. People with Down syndrome and their families should be consulted on the NIPT test, and, interestingly, they are overwhelmingly against it.

It seems people are all too eager to dismiss campaigners against NIPT once they reveal they have a personal connection to the issue. This may happen now when I say that my aunt, who passed away at the end of last year, also had Down syndrome. Yet why do people perceive our views on this issue to be biased by our own experiences of someone with Down syndrome? If anything, we speak with greater authority on the issue because we know exactly how fulfilling a life with Down syndrome can be, and how much joy they can bring to their relatives. We have witnessed it ourselves first-hand.

The imminent introduction of NIPT on the NHS shows we still take issue with difference in our society, or why would we be so opposed to bringing babies with Down syndrome into the world? We will never be fully accepting of disabled people in our society until we accept the birth of disabled children. As the American disability activist Celeste Adams so aptly quoted in her TED talk, “Don’t fix us, fix the system.”

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Thinkstock image by Tatiana Dyuvbanova

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The Future for My Son With Down Syndrome Is Full of Possibilities

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A few days after our youngest son was born, he was diagnosed with Down syndrome. I did not handle his diagnosis well. I grieved the life I imagined for him and for us. I went through stages of denial, anger, bargaining, depression and acceptance. Then it felt like “rinse and repeat” through those emotions. It felt like a never ending cycle.

Eventually I asked myself, “Why is it when I imagine the future for my oldest son I look at all the possibilities, yet I don’t do that for my son with Down syndrome? Instead I fear what the future may hold for him? Is there any guarantee my oldest will be a healthy, happy, contributing member of society?” The answer to my last question was, of course not.

I assumed the best when I thought about my oldest’s future and worried and assumed the worst when I thought about my youngest’s future.

Worrying about one and not the other suddenly seemed pointless and unhelpful to me.

Both my children will lead different lives. They will each have different strengths and different challenges.

That one simple tweak to my assumptions broke the cycle I was on. It wasn’t that I stayed in “acceptance” mode. I simply realized there was nothing for me to grieve. The future for my son with Down syndrome is full of possibilities, just like his brother.

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