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A Daughter’s Disability and a Father’s Awakening
- jackallis 8y agoI have a 20 months old daughter - who does not have DS. This was very tough read. I used to think of myself as a tough guy, but ever since my daughter was born boy i am the weakest of all.
- eridius 8y agoCaring for someone else is not weakness.
- bigodbiel 8y agothat missing comma made me reread that last sentence way too many times!
- trentnix 8y agoNo doubt. As a friend put it, you go through life with your education and career and name and goals and all the self-important things you wrap yourself in. Then you become a parent and it hits you: "THIS is the reason I exist".
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- taneq 8y agoThis whole article reads like an attempt by the author to convince himself that having Down Syndrome is not bad, not limiting, doesn't make you different. And I understand why - having a child with this syndrome would be incredibly challenging and probably the only way to cope is to restructure your world view so as to "make it OK" - but there's definitely a strong thread of denial running through it.
- maxerickson 8y agoThere's no denial in the article. It's a father writing about loving his daughter for who she is rather than who he thought she might be. Later: Even better for the second sentence there, it's a father writing about loving his daughter for who she is rather than grieving (the loss of) who he thought she might be.
- CuriousSkeptic 8y agoI usually compare it to other misfortunes most, if not all, of us suffer from. Like then sad fact that we are born without wings or gils. It can be frustrating at times. But somehow isn’t the main theme of our life story.
- k9s9 8y agoPeople do things they never thought they could only when they tell themselves the right story. More than "coping" or "making it ok" it's how mountains get climbed. Try contributing to a story that gets someone to summit a mountain. It's much more fun and satisfying than analyzing a story.
- newscracker 8y agoThe denial and anguish were clear in the beginning of the article, but later on it moved from that to just considering his daughter as a daughter. I didn't see any denial lingering around after I finished reading it, but the article did have an aptly-needed lament over the state of the society around (that discriminates against these people in different ways).
- drieddust 8y ago> that discriminates against these people in different ways That's the sad state we are in and in my view is getting worse or perhaps I am getting old and cynical.
- louwrentius 8y agoSome people may read those stories and when the time comes and they learn that their unborn baby has Down Syndrome they won't abort. And then they will learn the harsh, harsh truth. Fortunately, in practice, for the quality of life of everybody involved, most babies with Down Syndrome are aborted. This is the common practice. This is not a controversial statement. This is why we screen for it. Children being born with Down Syndrome are the exception, not the norm.
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- alanfranzoni 8y agoI have worked with people with Down syndrome in the past, and I must say they are amicable, nice, and with the proper education they can quite compensate for their condition. That said, I don't know whether they're part of the "intended" human condition. They don't seem to hold any advantage over non-Down people, only disadvantages. If anybody is scared about similar thoughts, consider doing a non-invasive pre-natal test (NIPT) during a pregnancy; it's a test that checks the infant's DNA in mother's blood, and has a great accuracy.
- exotree 8y agoThis is only somewhat true. Yes, many people with Down’s syndrome can compensate with proper tools and education. But it’s a spectrum. In just one group home I worked in, the ability ranged from non-verbal in one person to another being able to hold down a basic job, carry on conversation, and distribute their own meds.
- sudhirj 8y agoThe pre-natal tests are routine even here in India - I'm quite surprised they're not in the US.
- gnicholas 8y agoPre-natal tests are routine, and even free, in California. The state pays for testing that would identify Downs, including NIPT. Unfortunately, you have to do older tests first to be considered high risk and to qualify for NIPT or amniocentesis.
- silencio 8y agoCA's screening program is not free. It costs $220 to participate, although insurance may cover that cost so it is free to the patient. Any followup care for people with fetuses at high risk of a birth defect is covered by the state though. Back from when I was pregnant, I also recall that my insurer (Kaiser) would cover the cost of NIPT for anyone 35+ or in certain high-risk cases without having to go through the state. They also covered the cost of carrier testing. edit: I thought maybe you might be thinking of newborn screening which is also very much a Thing in CA, but it turns out that is also not free - $130, also covered by most insurance. Good to have though!
- newscracker 8y ago> Our cultural emphasis on individual achievement is dangerously selfish and tethered to a value system that degrades entire groups of people who are stigmatized as existing outside the boundaries of normalcy. But these boundaries are arbitrary, and the very category of normalcy is a fiction. This could be said of any systemic discrimination in society, including racism, sexism and others. This is an erasure of their inherent human-ness.
- bdurbin 8y agoMy son was diagnosed with Infantile Spasms when he was six months old. IS is a somewhat rare seizure disorder with those affected at great risk for developmental disabilities and autism. I can relate to the author's initial feelings and I also struggled with what I called "dark thoughts" in the first weeks after his diagnosis. Luckily these thoughts passed fairly quickly. It has been a year since his initial diagnosis, and though there have been struggles and setbacks, he is making progress and is the center of my world in a way that I never knew was possible. The experience is definitely causing me to reevaluate my definition of success and ideas of what constitutes a full life.
- Causality1 8y ago"certain forms of human diversity are stigmatized as undesirable or perceived as burdensome." I understand the why, but it doesn't make him any less dead wrong. If you told people they were going to wake up the next morning with Down syndrome most of them would put a gun in their mouth. I certainly would, and not because I feared how society would treat me. This article is just the latest incarnation of the "noble savage" myth; the worship of anything deemed "natural". Well guess what, worms that eat the eyes out of little children are natural too. So is malaria, and cancer, and blindness, and fibrodysplasia ossificans progressiva. The "diversity of human existence" as he calls it has a greater variety of horror than ever imagined by the most bloodthirsty tyrant or tortured writer. We've spent centuries in a war to the knife against that horror and for someone to declare they're on the other side is a stupefying act of denial.
- fzeroracer 8y agoYes, a father learning to love his daughter for who she is, rather than live in a mire of regret over what could've been is a perpetuation of the 'noble savage' myth. It sounds like you really don't understand the 'why' of the article if that's what you came out of it with.
- fromthestart 8y agoYou totally missed the point of his post. This isn't about living in some state of angst. This is about accepting reality and not maintaining [potentially harmful] delusions about disability to avoid strife. There are some unpleasant parts of life that we yet cannot change. How one feels about them, regretful or not, is another matter; but ignoring reality is a poor decision in any case.
- DanBC 8y agoThey're not harmful delusions. By far the biggest harm caused to people with downs is that caused by other people. People with downs can lead rich and rewarding lives, and facists should stop pushing a genocidal agenda against people with disabilities.
- tomcam 8y agoWe have multiple severely handicapped children. One of them was diagnosed with – this is a clinical diagnosis, not a politically incorrect slur – severe retardation early on. This child understands many things but cannot talk, and took 10 years to toilet train (I changed diapers for 16 years altogether). There isn’t enough intelligence to hope this child will ever be able to be self-supporting. Genetic tests reveal no known cause. We knew something was wrong because there was a slight variation in brain ventricle size in utero. In my view, the child has something very close to Angelman’s syndrome, which pairs the retardation with a pretty sunny disposition. I feel overjoyed to have these children and would never have dreamed of aborting them. The only problem is that I am saving not only for our retirement, but for care of the children once we die. It is a little bit stressful in that regard.
- trentnix 8y agoThank you for sharing. Perspective. Wishing you and your children the very best. I can't imagine your stress, but I've little doubt the end result will be that your children will be well taken care of after you're gone because of the work you've done and you're doing.
- hi41 8y agoWe were at a restaurant and a boy with Down syndrome cane and hugged my wife. I was very moved by the love the boy was showing to a complete stranger. He would come back and hug her over and over. I tear up thinking about that experience.
- nate_meurer 8y agoI love the whole gist of this article, but the author writes like an insufferable prick at times. > After genetic testing confirmed the diagnosis, one doctor assured us that “they’re such happy people.” They. Them. Those people. Damn, give the doctor a break. There appears to be no way to talk about people with Down's syndrome as a group without offending this guy's rules.
- costcopizza 8y agoThe tone is a bit dramatic, but the criticism isn’t. I bet the doctor doesn’t refer to a race as “they” along with a singular characteristic. Why would a disability be different? It’s the same as when people expect all people on the spectrum to be savants.
- nate_meurer 8y agoWe need to talk about groups of people all the time. Yes, even racial groups, e.g., "Black American males have higher rates of heart disease than their white counterparts" That black American males are a "they" in this sentence is an unavoidable feature of the language. How are we supposed to make statements like these without being accused of othering? Would you feel differently if the doctor had said something like, "They have high rates of happiness"? How is that different?
- GordonS 8y ago> We need to talk about groups of people all the time. Yes, even racial groups Of course, but you wouldn't make ludicrous statements like "all black people are good at dancing", or "all black people are fast runners" - so why would it be OK to say that "Down's people are happy"? Nobody is claiming we can't talk about people with Down's, or other disabilities, as a group - but we can do it without predujice and discrimination.
- anextomp 8y agoIt's fairly clear that the doctor did not mean that all people with Down's syndrome are happy. When talking about large groups in that manner, the average is implied. "The dutch are tall" does not mean that all dutch people are tall, but that on average they are taller than ourselves. Yes, talking about large groups of people can devolve into prejudice and discrimination, but in this case we're dealing with a group of people who are substantially, physically different. It is rational to point out the impacts of those differences.
- vtbassmatt 8y agoSurprising - in a good way - to see this article on HN. As the father of a young child with Down syndrome, I've felt everything the author expressed. Getting a prenatal diagnosis was one of the hardest things my wife and I have ever been through. (We did the testing so that we wouldn't bring a child with an unsurvivable genetic condition to term. For us, that would have been needlessly prolonging suffering for multiple individuals.) We were fortunate to do our mourning and grieving over the life we imagined for our unborn baby while he was still unborn. And that's what it really is - mourning the ideas and fantasies we put on our children from before they're born. Actually seeing and holding a baby really changes things. Don't confuse the inherent (and very real) challenges and risks of Ds with 1) the additional social burden we place on people with that diagnosis and 2) second order effects because we really didn't understand Ds all that well until recently. The author covered social stuff, so I'll mention a second order effect. My go-to example is that some of the speech problems previously thought "characteristic" of Ds turned out to be years of untreated ear infections in ear canals that are characteristically narrow. Once doctors learned to watch Ds kids' ears more closely, the prevalence of those speech problems decreased. People with this condition can do so much more than we thought 50, 30, or even 10 years ago. Things you think you knew from seeing "those kids" in the separate classroom on the other side of the school aren't true anymore (if they ever really were). My son's life is worth the same as any other child's, and he will be a valuable member of society when he's older. I hope you'll give him a fair chance.
- nate_meurer 8y ago> he will be a valuable member of society when he's older I know you'd agree, he already is a valuable member of society. He's already made you a better person, and everyone you influence in turn.
- vtbassmatt 8y agoThank you for saying that. Rereading what I wrote, I did a terrible job expressing what I meant to say. You fixed it for me :)
- GordonS 8y ago