I just found a small bit of popcorn in my daughter’s bum cleavage #popcornbum

This is possibly the week of my 15 minutes of fame, thanks to my ‘I Stand Quietly’ poem/open letter for autism awareness that I posted on this blog about 6 months ago.  It’s time to move on from #istandquietly.  Please help me trend on my new hashtag #popcornbum

Last night was the JustGiving Awards 2015 where I was a finalist for Creative Fundraiser of the Year.  (I lost, I’m not upset, I was overwhelmed to even get nominated, let alone be one of the three finalists, the worthy winner was über cool).

And I selfied with Superman, all good.

So gutted that thanks to my tipsy selfie unskills this actually looks like I photoshopped myself in
Henry Cavill: so gutted that thanks to my tipsy selfie unskills this actually looks like I photoshopped myself in…
…and who’s that cool looking photo-bomber in the background offering up the suave death-stare?  Anyone?

Tonight I’m having drinks at the National Autistic Society listening to Steve Silberman (author of a new book called Neurotribes: The Legacy of Autism and How to Think Smarter About People Who Think Differently
) in conversation with digital artist, poet and synesthete Jon Adams, who has Aspergers syndrome.  As if that wasn’t enough of an amazing opportunity for anyone, there’s a small chance that Alan the autistic gardener will be there…

*suppresses another wave of shallow celebrity-related squeals*

Part of my ongoing angst about ‘I Stand Quietly’ is that (for all the good it has done), it is essentially focussing on the negatives of autism, useful in some ways but not, I believe, going to benefit autism rights in the long run.

Forgive my developing ego, I’ve been thinking that this week’s publicity may bring a few new visitors to my blog and knowing they are unlikely to read extensively, I’ve been wondering what to “headline” with as my preferred one-shot message about autism.

I would rather you forget my poem’s images of my daughter in distress, in sensory meltdown and instead (not in a weird way) imagine a little bit of popcorn nestled in her lovely, squidgy, slightly dimpled bum.

The popcorn was not in her bum cleavage per se: daughter and I share a little-celebrated genetic trait that, in our family, is fondly known as a “money pocket”.  The correct medical name is a sacral dimple and as far as I was concerned growing up, it was simply for storing 10p for emergency phone calls.

Sacral dimples are found in about 2-4% of bottoms and are generally harmless.  They can be shallow or deep and at their worst, an open hole, possibly leading to an unclosed neural tube that can indicate spina bifida, but this is extremely rare.

Not that I knew much of that before a quick Google whilst prepping this blog post.

By the time I was reaching my pre-teens, my “money pocket” was a non-subject; forgotten partly as body-related conversations went moodily, hormonally off-topic, mainly because it is really not significant.  It might have crossed my mind a couple of times as to why I was different but once mobile phones were invented, I didn’t need that 10p and it had no obvious other use so I didn’t have cause to think about it any more.

It was rediscovered by my husband, ahem, and then quickly forgotten again until daughter was born.  Whilst poring over every gorgeous inch of her lovely marshmallowy-soft baby body, we discovered she had inherited a money pocket.

10399255_25462859049_3441_n

I can’t even really remember what I thought about that; mild amusement maybe, I certainly wasn’t worried about it.

I felt no more or less fascination than with any other little bit of her, from the 10 tiny fingers to the 10 tiny toes, my eyes…

And the girly rosebud version of her Daddy’s lips that, of late, are extra pouty and reddened: permanently enhanced by the results of being “salt-cured” as daughter is currently addicted to salty popcorn, with stealth-added extra salt if she can get manage to sneak it.

If she had her way, salt-laden popcorn would be served to her for every meal, preferably whilst tucked up in our bed.  Husband is very very fed up with finding popcorn debris in the bed.

This is how a small chunk ended up being stored in her money now-renamed popcorn pocket – saved for later, in case of emergency, I suggested – she thought this was completely hilarious.  I am still completely baffled by how someone with the most acute sensory sensitivity of ANYONE I know cannot feel that they have a piece of popcorn in their bum.

When googling about sacral dimples, I came across a forum where a new mother was seeking advice on plastic surgery to correct her newborn’s (already confirmed as harmless) dimple.  She was clearly distressed and somewhat disgusted.  Her child’s sacral dimple was something that needed to be treated, eradicated.

She was also in a guilty emotional turmoil, questioning what she had done during her pregnancy to cause the defect, lamenting a couple of glasses of wine and some painkillers.

It read as crazy.

Super crazy.

Barking at moving vehicles, believing in leprechauns, “OMFG are you actually responsible for a newborn?” type of crazy.

How could the woman be so ignorant?  How could she feel that way?

But then I realised she was just at the very (very, very) far uneducated end of a continuum: the panicked mum, ignorant of what this new unexpected thing really means, disappointed that it wasn’t all textbook perfect.  I’d been there too.

When it was confirmed that my daughter was autistic, I cried.  Grief, relief, I’m still not sure how much of each, and then I took it on.  I read tons of books and websites, I met with the lovely lady from the National Autistic Society, I visited autism parents’ forums and joined autism parents’ Facebook groups…

In that initial “I can fix this” flurry, never once did I seek support or guidance directly from someone autistic.  With hindsight, it was because I knew little of autism, and so I was scared; and through that fear, unwittingly and unintentionally prejudiced.

Hubby and I (briefly) questioned our decision to give daughter the MMR jab.  We reminded each other of how she had a terrible traumatic birth, we recalled my difficult pregnancy and I soul-searched about how I’d had a couple of glasses of wine and a shameful sushi binge.

How could I be so ignorant?  How could I feel that way?

Forget Superman...
Forget Superman, meet Batgirl…

More recently, the things I’ve learned about autism, I have learned from autistic people, including my daughter.  Now I completely understand that we are simply dealing with neurodiversity, a natural variation; no reason to weep, nothing more shocking than inheriting a sacral dimple, or my eyes.

OK, that neuro-difference does come with some challenges.  OK, daughter needs a lot of help and support in certain areas of her life, maybe she always will.  OK, she has benefitted from certain types of therapy.

Her autism, however, can’t and doesn’t need to be “treated”, let alone eradicated.

Although inarticulately, I have been saying to people for some time that I believe that autism is set to be the next big rights movement: gender, race, sexuality, neurodiversity.  Steve Silberman’s book, Neurotribes, contextualises and justifies this.

I don’t expect anyone untouched by autism to read Neurotribes in full but I would ask you to take 5 minutes to read Silberman’s interview with Salon magazine for an idea of how wrong we had it and the scale of change I hope we are going to be dealing with.

I am excited and proud to be present at, and hopefully part of, what I hope is the start of a paradigm shift in how autism is viewed and appreciated, thanks in part to Silberman’s book.

I’m not saying it’s the best ever book about autism, to be honest, I’ve not finished reading it yet (blush) but I’m excited by how it’s created a wave for us to catch: along with Alan (the autistic) gardener and others, autism might be becoming a “thing” and we really need to capitalise on that.

In continuing hysterical fangirl mode, I am going to ask Silberman to sign my copy of Neurotribes tonight.  To be very honest, I’m significantly more excited about that than last night’s selfie with Superman.  No offence Henry, sweetheart.

I’m then going to keep his book in a safe place, as a promise to my daughter.  My plan is to give it to her in just over 10 years time, on her 18th birthday…

First and foremost, I am a mother and my time must be devoted to my daughter’s development and needs (autism-related or not).  That doesn’t leave me much free time, but after last night’s awards, I feel inspired, reinvigorated and even more committed to spending that time campaigning for autism rights, writing and sharing this blog.

Ten years probably isn’t enough time to achieve all the societal changes I dream for but hopefully we’ll have made significant steps, significant enough for her to come of age in a world that views her as equal, accepts and supports her to be able to achieve her full potential, sees her as special for her contributions not her needs.

My ambition is that on daughter’s 18th birthday her biggest fear is not how she will be treated in the world because she has autism, it will be whether she will be recognised as the young lady whose mum once blogged about the popcorn up her bum.

So, if you’ve made it this far, I’m asking again please – I would appreciate a ‘Like’ or a ‘Share’, let’s move on from #istandquietly – see if you can help me trend on my new hashtag #popcornbum

http://justgiving.com/autism-awareness-jill-finch/

11 thoughts on “I just found a small bit of popcorn in my daughter’s bum cleavage #popcornbum

  1. Enjoyed the log very much. My granddaughter has settled quite well into residentional care, though pleased as I am about this, am still devastated she had to go in care. She is speaking more words, with the preference on words pertaining to food cuwwy (curry) fish and chip singular, meat ball, said with lots of emphasis on the meT bit lol. Thanks for your blog, and your great sense of humour. Patx

    Like

    1. Pat – I can only try and understand how hard that is to make that decision so I’m thrilled to hear that she is making progress. Being able to express your needs and wants and be listened to is such a fundamental thing, I hope she continues to thrive – she won’t do badly on cuwwy and a chip! Thank you xxxxx

      Like

  2. My sister had her son diagnosed as Aspergers, it has had a huge negative impact, career wise, even getting into University was a struggle, even though he was on the gifted & talented program, purely because he is autistic albeit high functioning. This is part of the reason I have never bothered having my 2 girls tested. There’s so much discrimination against anyone on the autistic spectrum. I also didn’t want to label our girls, as in teachers letting them misbehave or letting my girls pull the “but we have Aspergers” card. They are both on the gifted and talented program and are very sociable, to an extent, and apart from having zero common sense, they “blend in” in public. Home is another matter, but again, because I’ve lived my whole life with high functioning autism. My husband brother is at the opposite end of the autism spectrum. He’s 19, non verbal and will never be able to live independently. But he is such a loving child, although technically he’s an adult. When most people think of autism, they immediately think of someone like my brother in law. A lot of people know nothing of the autistic spectrum so don’t necessarily think of the high functioning end. Which is why there’s so much discrimination against anyone on the autistic spectrum. It’s so wrong and I really hope this changes.

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    1. I wish you could have sat on my shoulders at The National Autistic Society tonight. Steve Silberman (please buy Neurotribes and ram it down as many people’s necks as possible!) genuinely gives me hope that we are at a crucial point of change.

      I feel I have shed a weight of despondency and been reinvigorated to keep things moving in the right direction… Not in time for everyone to achieve their potential, granted, but on we must push.

      I’m fascinated by your decision to not get “official” diagnoses for your daughters – do they identify as on the spectrum or have you not even discussed it? (If you don’t mind me asking) – with no criticism or judgement, someone once said to me “you don’t get autism just because you were diagnosed with it…” – do you feel this is something that will impact them later in life but worth the risk or do you feel they won’t need support as adults therefore you are sparing them unnecessary prejudice in the education system?

      Thank you in advance if you feel you don’t mind answering but totally respect if you prefer not xxxxxx

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      1. Sorry for the long delay in answering, they know there is something different about them, they’re 12&16, but they also know that differences in people are a good thing as life would be so boring if we were all the same. Because they are aware of their differences, lack of empathy being one, and people not being as “smart” as them, we’ve been able to change their reactions and make them aware of what they should say in certain circumstances. Because we are so used to Aspergers in our family, we were able to identify and help them before any big issues arose. Also because both of my sisters had their children diagnosed, my girls benefitted from the help given to their cousins without them being labelled and stigmatised like their cousins have been. I was really lucky, I learnt from my sisters and how hard my nieces and nephews have had to deal with “The autism label” attached to them.

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        1. Thanks Tessa… much food for thought there. Have you read Neurotribes? I would really recommend it… the journey of ‘autism’ through the book really resonates with some of what you say… I feel very divided about what you say (in a good, fascinated and excited way) – at first my gut reaction was that autism is not a label and you should not deny them their “truth” e.g. don’t hide from prejudice, fight it… but on the flip side, maybe you are just super futuristically radical where individuals need no definition, just that we should all accept everyone for who they are.

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          1. I don’t think anyone should be labelled, everyone is so much more than just a label. I want my girls to be who they are, not labelled as “that kid with Asperger’s” I’m lucky my girls are so much younger than my nephews, and when I saw how they were treated, for example one of my nephews had to get numerous character references, to get into university, just because he has Aspergers. We know this as none of his friends, who got lower grades than my nephew, not one had to get character references. My other nephew was turned down by the army as soon as they got his medical history. Both because they were labelled as autistic. My girls are 12&16, all their lives they’ve known they have Aspergers, just as they know their uncle (The Hubsters 19 year old brother) is at the other end of the autistic spectrum. We’ve never kept anything away from them, we just leave it up to them who they want to tell. Even now as soon as you say Aspergers or being on the autism spectrum some people immediately assume the stereotypical form of autism, like my brother in law has. The vast majority of people don’t understand that the autism spectrum is huge and many of them could be on the spectrum without their knowing it. I haven’t read the book, but I will do now 🙂

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  3. When being “different” becomes the norm, this world will be a better place 💗 I’ve lived 43 years as “different” I am indeed looking forward to seeing a change as everybody has challenges be it tiny or huge and we do need to recognize these. Will be buying the book as I look forward to seeing his perspective and as always your blog was top notch xx

    Like

    1. Thanks 😀

      The book should be a great read – and I agree with you – everyone does have challenges… this book will hopefully make people think differently about difference and judgement full stop.

      I am trying not to rave too much about how significant I feel this book is, as I don’t have an unbiased perspective, I am such a fangirl, I feel sick 😉
      I need to ask some ‘neurotypical’ friends who don’t know/read my blog if they’ve heard of it via the mainstream media yet…

      …but I am positive we are reaching a tipping point.

      Like

  4. interesting comments here. I work with students who are differen in many various ways and many are “on the spectrum” or have “autistic traits”. They have all ben assessed and “labelled” and for many of them without the “label” they would not have received the help they need and I think for the majority (if not all) the parents have had to fight every step of the way to get the help they need even with the “label” it is lovely to hear from someone who has not had to have a “label” to help their children but sadly it is often neccessary.
    I lov e to read about autism and how people cope because I work with autisic students and someitmes read things I can adapt for them
    Good luck to all of you.

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    1. Yes I agree. The majority of adult autistic bloggers that I follow and the other autistic adults I have met don’t see it as a “label” it is intrinsic to their being, it is the correct name for them…

      I feel that we wouldn’t be having this debate over someone blind or with cerebral palsy… Or someone Polish, or Irish, or Jewish, or gay, or transsexual…

      I cannot be emphatic enough that reading Neurotribes by Steve Silberman is fundamental to anyone affected by or affecting (people with) autism in any way…

      The way he unfolds the history that caused it to be viewed in such a negative way is so clear, comprehensive, captivating… And most importantly compelling.

      It is more useful than any other book on the subject I believe…

      I feel that it’s the same as expecting black people to pretend to be white – we are the generation that needs to stand up and fight against prejudice against “autism” even that which is simple ignorance and misunderstanding… There should be no debate or decision needed as to whether one correctly identifies themselves or their offspring as autistic. One would not dye a “ginger” haired child’s hair to protect them from the higher likelihood of teasing their hair may bring them……..

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