I Support Unicorn Farts
Posted: February 12, 2014 Filed under: advocacy, disability, Down syndrome, personal growth | Tags: disability, Down syndrome, Parenting, Prenatal diagnosis 47 CommentsThere’s this thing. It happens in the Down syndrome community. (I think it happens in other places too, but I can only speak to what I know.)
By KarenSLewis (Own work) [CC-BY-SA-3.0 (http://creativecommons.org/licenses/by-sa/3.0)
When I started reading blogs and articles written by parents who have kids with Down syndrome, part of me was confused. I had a kid with Down syndrome, but someone had forgotten to have me drink the kool-aid. There I was, crying my eyes out, and reading things like, “My child is the best thing that ever happened to me!” or “The sky’s the limit!” Huzzah, Down syndrome! Rah! My life is full of sweet-smelling unicorn farts and rainbows.
I just couldn’t grasp what was happening.
Why on earth were these parents shouting these strangely positive things, every chance they got? Weren’t they sad? Their children had Down syndrome, after all. How is it possible that having a child with Down syndrome meant that your life was filled with unicorn farts and rainbows? Where was the reality?
Then a few weeks ago, on Facebook I saw a person who did not have a child with a disability share a link to a mother who did have a child with a disability. It was a blog post written by a mother whose child is autistic. I won’t link it here, but it was very negative. The writer made a lot of blanket statements about “special needs parents” that described how we are suffering, how awful and hard it is. Now I don’t know the writer’s true circumstances, but I didn’t love that she insisted that all special needs parents were secretly suffering as she did but only some were willing to admit it. As much as I hate the label, I am a special needs parent, and I am decidedly not suffering.
What bothered me most was that the person sharing the link made a very troubling statement about other parents who didn’t admit to this kind of sadness and suffering as being in denial, not willing or able to accept their children’s limitations. Is that what it looks like from the outside? Is all the positive stuff seen as denial, and the utter grief of a few seen as the actual truth that no one will admit?
I’ve also seen this from women giving rationale for terminating for a Down syndrome diagnosis. Some women claim that parents who are (to them) overly positive about their child’s diagnoses are in Unicorn Fart Land, unwilling to admit the harsh reality of their lives.
Look, since when are the parents of a typical child accused of being in denial when they dare to hope and dream big? I’m imagining a parent making some kind of comment about typical little Bobby’s bright future. Does anyone blink an eye? No. Because that is what parents do.
Parents dream, cheer, and hope for their children’s futures. None of it is ever realistic, but it is isn’t supposed to be. Everyone knows that their child is unlikely to become the first woman president, be the next Mother Theresa, or solve world hunger. That doesn’t stop parents from assuming that it is possible. That is just a natural way some parents love on their children. And trust me, I have been told plenty about the limitations my child might face. Doctors, social workers, therapists, and even well-meaning strangers have all made sure to let me know what my child might not do.
So maybe not the president or solving world hunger, but why shouldn’t a parent think their child with Down syndrome might live independently? Why shouldn’t a parent plan and hope for their child to become gainfully employed, live happy, fulfilled lives with friends and community? Why shouldn’t a parent be loud and proud, without being accused of being in denial?
I don’t tell the parents of typical little Bobby that their dreams should be more realistic. I don’t point out that he’s got addiction and mental health issues on one side of his family, cancer on the other. I don’t look at his milestone achievement to evaluate his potential worth in twenty years. I don’t assess all the things he won’t be able to do and insist that his parents talk about that publicly, or else they are in denial.
What I want to tell people who have a prenatal diagnosis is that all this variation you see in the community, well that is the same variation you’ll see in all parents, regardless of disability. Some parents are just very rah-rah when it comes to their kids. There’s no one true picture of disability; how one approaches life can have both positive and negative effects.
So maybe not every unicorn fart resonates with me, but I support unicorn farts, gosh darn it. Just because disability is in the picture shouldn’t take away a parent’s right to be utterly, wildly in love with their child. At that love will carry them through the hard parts of parenting, as it does will all parents and children, disability or not. If some unicorn farts come out in the process, I think that is only natural.
Say it with me now: I support unicorn farts.
See? Even the armed forces like unicorns.
By US Army Institute of Heraldry [Public domain], via Wikimedia Commons
Kimchi Latkes 
In this house, we have lots of kinds of farts. My cat just farted so horribly that I had to cover my nose with my sweatshirt for a good ten minutes. Farts are fine. It’s the people who think that theirs don’t smell that are the problem. xo
This would be a good time for a Monty Python joke, eh? I’m a nerd.
Love it, Jisun. The thing that bugs me occurs when some jerk says, “Oh, it’s all fine to have a baby or toddler with Ds. But just wait until the child grows up and causes problems for the rest of us!” It sounds like they’re talking about a wild animal that people decide to raise, not a human being. Yeah, you get tired of the glurge, the talk of how your child is an “angel” sent to “special parents” (especially when you’ve been woken up five times in the night by your “angel” who also hates her snowsuit and bites you when she breastfeeds.) However, like you, I’ll take the rainbow farts any day rather than deal with the animosity some people have towards kids with disabilities. My Katie’s never going to be a Rhodes scholar. But, hey, I’m not one and my neurotypical child probably won’t be one, either.
Yes, the baby vs adult thing is really frustrating to me as well. There have been so many “just you wait and see” comments I’ve seen around. You’re right, it kind of feels like a dog that got too big, or a goldfish that outgrew its cuteness tank.
The special angel stuff, I put in a slightly different category than just plain Unicorn Fart Land. I’ve been thinking about it, and I think a lot of it comes from a religious divide. It is spoken in a very specific (often evangelical) Christian language that comes out sounding terrible to those outside that community. I frankly think a lot of it gets used for bad purposes and wish it would stop, but do understand that it comes from a place of love. I guess I just wish the love were a little more careful with their words. I’m rambling. On my own blog. Ack.
We’ve been around long enough (our son is 28) to have waited to see, and what we’ve seen so far has not diminished our support for unicorn farts (he’ll roar laughing when I tell him about unicorn farts) one bit. He is a fairly typical young man with Down syndrome in many ways, but entirely his own young man in most ways. Mostly it works to just work out what support he needs, work out how to provide it and life goes on. There have been a few times when we were doubtful we could come up with a work-around, but we are still surprised by how a bit of thought often leads to the desired outcome. So I would say,”just you wait and see – it could very well be more than okay”. Jill
Thanks so much for this comment, because it speaks so much to the “Oh just wait and see” kind of pessimism. More than okay. Yes, I’ll take that. :)
That gives me hope, Jill. Thank you. (Sorry for my response. I couldn’t help myself, Jisun–it’s your blog but I was heartened by Jill’s response.)
No, don’t apologize! Everyone should talk amongst themselves here, too. :)
Andrew Solomon is in town (Cleveland) talking about his new book, “Falling Far from the Tree,” which is about parenting children who, for whatever reason, are not what their parents expected (disability, disease, homosexuality). He was interviewed on the radio this morning and now I want to read the book as it is all about what this post is about. He quoted a woman whose son was born with multiple disablities and then later died directly due to the neglect of a care provider. The woman said (loosely quoted) that she wanted to express her rage at losing her son twice–first for not being the child she expected when he was born and second for losing the person he was, whom she deeply loved.
I have such conflicted feelings about Andrew Solomon. On one hand, there are times when I read/listen to his words, and I feel very much in his corner. Then other times, I’m left with a funny (as in not good) taste in my mouth. I’m only part way through his mammoth book though, so I’ve been waiting to finish before I decided for good. We must discuss further!
I read Far From the Tree last year and walked away with very conflicted feelings. On the one hand, it’s a fascinating study of the human condition as it pertains to differences. But I felt that he missed the mark on his Down syndrome chapter. The autism chapter was extremely bleak – and, as I do not have a child with autism, I really can’t speak to the accuracy of his portrayal of autism, as I can’t speak to the accuracy of his portrayal of most of the “differences” in his book. In all, it felt pretty grim, and I was left wondering what the point of it was. If it was meant to foster acceptance of diversity, I think it falls very short.
Lisa you are the only person I’ve ever found to give a less than five star review of that book. Is this why we are misfits? I’m about half way through so like I said, trying to withhold judgment, but yeah, really conflicted… Holly, what say you?
Did you ever read what Allison Piepmeier and George Estreich wrote about it? You should.
I haven’t read the whole thing, but what I have read left me conflicted feelings as well. I will say I saw him speak last year and a lot of people asked pointed questions about some of the things I was conflicted about and I came away really appreciating him. That said, I didn’t necessarily get that feeling from his book, so… (I wish I could remember what the questions were and what he said, but sadly…my memory is failing me.)
Hahaha! I just read your remarks about comments and now I can’t stop laughing. I support unicorn farts too. There are a few whose are so plentiful that I don’t read them much; but that is my own personal preference. I’m sure some of mine annoy people too on occasion.
Yup, I don’t read the overly unicorny fart ones either. But darn if I get bothered when someone says that they’re in denial. Like what kind of parent doesn’t understand the challenges of raising their kid with a disability, they are living it, hellllooo. For the record, I’ve never been annoyed at yours. ;)
Everyone’s reality is their own, and I can accept that. I have trouble with any sort of parent – whether it be rainbows and unicorns, or the dismal, stuck in grief sort – who professes to speak for the masses. i don’t even like the label “Special Needs Parent,” personally. I’m just a parent dealing with all sorts of triumphs and challenges. Parenting any child is a mixed bag, and that’s the truth.
I hate the special needs parent thing. I guess I know I’m technically one of them, but nothing about LP’s needs feels all that special at this point. And even later, if he’s in school and needs support, or whatever, what is so darn special about that? Don’t typical kids get tutoring and extra help?
I’ve been mulling this over, and I hope this post didn’t come across like *I* was speaking for the masses. I just wanted to defend the uber-positive-unicorn-rainbows parents to say that I really don’t think it is a matter of denial, but just a parenting style. I feel like those are the same parents who, without a kid with a disability, would be exactly the same about their typical kids. Just really positive and optimistic, maybe to a fault. And that isn’t me, but like you said, everyone’s reality is their own.
No, you didn’t come across like you are speaking for the masses – that was just an observation I’ve made about other articles, etc. I come across all over the place. The articles that say, in some way, “THIS is what disability looks like,” or “THIS is what special needs parents feel like.” You know?
I’ve been pondering this a little more since reading your post earlier today, and I get being a rah-rah, optimistic parent, but I also very much appreciate parents who are honest about the challenges they face (and not just as it pertains to disability, but just parenting in general). I have trouble with the 100% positive all the time stuff, because it doesn’t feel real to me – or maybe I just can’t relate. And I think it’s a slippery slope, too – it’s easy to become part of the whole competitive parenting problem, creating impossible standards that make us average parents feel like crap. On the other hand, I also don’t like the stuff out there that makes parenting a child with a disability appear to be a sucktastic drag.
Anyway.
Sucktastic drag, haha. I’m with you on the 100% positive. Nothing is 100% positive to me. But some people are just like that. I think maybe it feels like airing their dirty laundry? Why say they are in denial, kwim? They’d likely be like that no matter what, except it gets blamed on the disability.
I think this is part of what sucks about being part of a marginalized group. Single experiences become token ones, and nothing is taken in context.
I’m so happy to read this.
Probably because you just smelled my unicorn fart. ;)
I support unicorn farts!!! fart away oh multicolored rainbow one!! you want realistic? hey maybe your son might be more likely to be the next boring prime minister but then you have to accept yours is more likely to be a drug addict, a murderer, a rapist!! statistics are stupid they mean nothing because we all only have 1 life, not 1 in a million!! but if you want statistics studies, have asked adults with DS are they happy 98% say yes!! before you tell me to be realistic about jacob, “are you happy?” until then lets all fart rainbows for our kids!! the more ridiculous the better!! sesame street and my mum and dad taught me to dream big, don’t you dare tell me sesame street is wrong or i will take you out with one big rainbow vomit!!!
that’s my rant over. and no, no particular incident inspired this, just little comments and looks i sometimes get when i talk about Jacobs future!! if he wants to be a wiggle he will wiggle!!
Rant on, mama. :) I think I will insist on being called the “Multicoloured Rainbow One” from now on.
My word sister, your thoughts continually hit me (there’s glitter involved when it touches me) again and again. Yes—I think in general what I find labeled “hard” about parenting a child with special needs, isn’t really harder than parenting in general. In fact, I’d say that the only time I feel stressed about Finn is usually when I find myself on parent “support” sites for DS. It’s their anxiety that I let in sometimes that makes me start worrying about possibilities I wasn’t thinking about before. “oh sh**, should I be calling my respite worker about that? Do we need this therapy too? Am I not doing enough oral motor drills at feeding times?” All that banter is what makes me feel isolated and different. The Momastery blog (which I find great for all sorts of life-pondering nuggets of wisdom) shared once about an olympic swimmer who said, “I swim best when I mentally stay in my own lane”. That resonated so much for me because I find that when I feel my best and fullest about our family is when I just focus on what Finn is doing and telling me, not when I pay attention to what others are doing or thinking. And so I feel that the best way to spread my message of inclusion and equal treatment is to perhaps just live as equally as any parent and love and dream and hope for Finn just as he is.
PS…I think we just might be kindred mama souls :)
Swimming best in your own lane. YES. I’ve tried to swim in other people’s lanes and it has never, ever ended well. Why I didn’t learn that lesson ages ago, who knows? I’m stubborn, I guess. ;)
Brilliant! I love all my children and Rosie my youngest with designer genes, as I always tell her is my cherry on the top xxxx
Thanks, Vanessa! :)
Ohmygoodness I just LOVE unicorn farts and I didn’t know til I read this! Thank you soo much!
Haha, I’m spreading unicorn fart love. ;)
Yep. I’ve been working on a post along these lines for a while…(don’t be offended if a similar topic appears on my blog soon!). I am constantly asking myself whether I sound like I am trying to sell Down syndrome to people when I talk about it. I don’t want to sound too happy, which is ridiculous. Sometimes it feels like a contradiction to talk about the worries and the negative aspects when you are experiencing and supporting unicorn farts too! But I think it is definitely possible and natural to have a foot in the unicorn fart camp and the hand wringing worry camp. Every other parent does so why not us?
Exactly! It’s just regular old parenting, I dunno why some people just want us to be sad or struggling all the time. Well, I guess I do know, since some people really think that it is a big tragedy. Not offended at all if you write about it, can’t wait to read!
I love this. As a mom-to-be of a baby with T21 diagnosis – I love every bit of it. And it’s where we’re “at” – I cried after diagnosis, that baby was going to face challenges – and I’m sure I’ll shed more tears over that, but then it dawned on me – which of my kids (4 older siblings) is perfect?? They each are individuals who struggle with some things, excel at others, cause me to have to have a regular appt w/my hair dresser to color the greys as teens…we just have a little bit more of a head’s up with this baby, but we’ll still want, and expect, all the best for him
Beautiful. Congratulations on your new squish in the oven! xo
Woo hoo for unicorn farts! Big supporters here too! I sometimes wonder if people think I’m living in la la land because we are positive and happy (most of the time). I think people expect me to be crying and filled with grief. There are challenges with both of my sons. And I don’t know what you’re talking about…Carter will be the President someday. Sheesh, way to try and kill my dreams! Love ya friend!
Haha. Sorry. I know, I’m such a killjoy. ;) <3 to you too, mama!
Thank you for this one. I’m with you.
Glad to know I have company. :)
Reblogged this on The Daily Advocate By Painspeaks.
The comments are almost better than the post. Almost. Yes, Jisun, I absolutely support unicorn farts!
Ha! Agree, sometimes comments are the best part. ;)
Thank you for writing this — for once I found something that reflects a lot of what I feel being my son’s mother. He’s 2 1/2 and has Ds which was diagnosed 10 weeks after he was born.– although I suspected at birth. We didn’t have a lot of tears then nor we do now. I particularly hate the “special angel babies are sent to special people” comments. Someday when I am not sleep deprived, I would LOVE to rip that one apart.
Sigh. I’m not a fan of the “special angels for special parents” either. It just doesn’t resonate with me at all. I don’t feel special. And yeah, I guess my kid is special, but that’s in my eyes. All my advocacy is about trying to have others understand that he’s fully human, and only unique in the way that every one of us is unique. I generally don’t love anything that puts me or my child over there, when I’m trying to make a place for him within society.
Now I must admit that I’m totally delighted to meet another parent whose child was diagnosed post birth. It is sort of a unique experience, isn’t it? So glad you commented. All the best to you and your family!
Just got around to catching up with your awesome writing! This might be my fave so far! From day 1 we have decided to dream big and why not we do for all our kids. I think many people think we don’t live in reality but I find most of them have no idea what reality is! Also one huge thing I have noticed is that if I am positive and happy about Treyton and his life other people take their vibes from me and I love it! At first they seem a little shocked that I’m ok with it but then they watch us live and realize they’re ok with it too! Best thing ever to see this unfold!
Yes, we should spread the kool-aid, right?? We are the same, people are surprised at first, but usually come right along into the positivity. Not that there isn’t a ton of work to be done, but it is a good start!
This just made my day. Loved everything about this and I too support unicorn farts! I have three kids and I have found many bumps on the road with all of them. I honestly can’t say my other two are easier, just different.
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