Marriage, autism and doubts

As I sat in the plush chair in a salon in Bombay a few days ago, I nearly started crying. No, the heat of the blow dryer wasn’t too much, neither did the searing hot iron burn my scalp.

I was getting my hair done to attend a wedding function that night…and an idle mind can lead to many things. This post might surprise many, including my mother, who probably has no idea I think this way [Edit: I just showed my Mom the post before hitting publish and she surprised me telling me she knew I thought this way]. Writing is cathartic though, and here I am, to share my experience with others who may be in the same boat.

I’m, annoyingly enough, at that age where people are asking about when I’m getting married (in desi years, I believe I’m near the end of my shelf life hahaha). Luckily, my parents aren’t too fussed about me tying the knot any time soon, so my Mom has been deflecting all attempts from well-meaning relatives to get me to see a boy. “No, she’s too busy with her career, not now,” my Mom says (I LOVE YOU MOM, YOU KNOW THAT?).

Anyway, as much as deflections are being made…I do think about the future. Who wouldn’t? Sure, I’d like to get married someday, with someone whom I love and who loves me (therefore putting a spanner into a traditional “arranged marriage” concept for me). But there is a condition to it: he has to love and accept my brother too.

I’ve gone through enough recently and seen others go through the same…a situation where one is rejected (as a potential wife/daughter-in-law) due to the existence of a child with special needs in the family. So now I’ve kind of brainwashed myself to believe that, in general, most people are narrow-minded and as a result of this, it’s highly unlikely I will ever find a man whom I can love and who will accept my brother, not just as a part of the family, but as someone whom I will be taking care of eventually. I think it’s a defense mechanism I’m employing, to avoid being hurt again.

Apart from this, another thought entered my head as the stylist tonged my hair and curled my ends: what if I do find a man like this and end up getting married? Can you imagine the logistics?

My brother is not a high-functioning autistic. He cannot speak, he only babbles. We still have to give him a shower and clean him once he uses the toilet. While he has progressed a lot through the years, he is still in need of 24/7 vigilance. Anyway, weddings are noisy and long affairs…how on earth is he going to attend ceremonies like the sangeet for example (an event where people basically dance, eat and drink in celebration)? Will he be able to handle the noise? What about the people? The crowds? If he’s even able to attend, what about my Mom? Can she really enjoy herself? What about looking after my brother? Will she be able to participate in the festivities?

All these thoughts kept repeating for each of the traditional ceremonies I’d expect to have if I was getting married. Before you say: don’t have these ceremonies, let me tell you, I’m a bit traditional at heart. If I ever get married (note my defense mechanism of “if” – it’s never “when”), I want the whole shebang. It doesn’t have to be necessarily big in terms of number of people there, but big in terms of absolute fun.

I’m so paranoid, innit? If…if…if.

At this point…I open my eyes, see my hair falling down over perfect curls on my shoulder, blink my eyes to dry the tears away… and move on. I allowed myself my 10 minutes of wallowing, now I was done and ready to enjoy the night with full-blown enthusiasm (I did, in 3.8-inch postbox red heels at that). As the song goes…the future’s not ours to see.

 

Book Review: Passion by Lauren Kate

My review of Book 1: Fallen
My review of Book 2: Torment 

Spoilers and all that but read on anyway.

If there were any hopes the third instalment would give us something, or even something to praise, then they have been cruelly dashed with the nonsense I read through.

The book takes off from the end of the last one, after the mini-battle, where Loopy Luce decides to take off on a time-travelling jaunt on her own. Why, you ask? Because she can and she’s an obstinate little chick who is the sort to throw tantrums. Anyway, off she goes, despite everyone saying: “NOOOOOOOOOOO!” because if there’s one thing I learned reading these books is that only reverse psychology works on this girl.

I think, in her mind, conversations are like this:
Everyone: Don’t do it Luce!
Luce: That…means…DO IT!
Everyone: No, it’s bad for you!
Luce: THAT MEANS GOOD! *claps* 

She then waltzes through time through each of her past lives watching herself die everytime. Then if that was not enough, she goes into what the author hilariously calls “3-D” (HAHAHAHHAHAHAHA) and merges with each of her past lives. And dies.

THAT’S IT! That’s the plot! The story is essentially one chapter multiplied into numerous chapters. Each chapter is her finding a past life, dying, then moving on to another time period. Alternate narratives are Broody Daniel also moving back in time, running behind Luce but never quite catching up because he’s just too slow or stupidly lands where she’s already been and moved on. And when she meets her past Daniel, it’s ALWAYS: they meet, they fall in love, they kiss, she dies. REPEAT! She doesn’t care one bit about taking control of other Luce’s bodies and selfishlytaking over their last moments.

There’s also an annoying gargoyle called Bill, and never mind how people she knew in past books betrayed her. Gargoyle Bill says: “Hop into this dark shadow and travel across time, and while you’re at it, kill yourself with this dangerous weapon,” and Luce jumps to please. What. An. Idiot.

We have no idea exactly why she wants to time travel except when she blabbers something about wanting to understand her relationship with Daniel and wanting to know if he really loves her, or some such psycho-babble. But hey, by the end of the book, we still don’t know why they love each other, what on earth the curse is all about and why they get so goopy around each other? Characters keep saying, OMG YOU’RE SOUL MATES. Yeah…but why???

Luce is still whiny, as I said, defying everything everyone says because she thinks she’s all that. Daniel is still tortured, and decides that he is so totally going to tell God (yeah, really) that he wants Luce to die again and again and again BECAUSE HE LOVES HER! LOVE WILL TRIUMPH and blah blah blah. Apart from the fact, as I mentioned: there is no foundation to their “love”. Nothing!!! It’s just lust, based on descriptions of how she feels his abs and wants to kiss him and gets giddy when she sees him. 

I loved (when I say loved, I mean I howled in a combination of laughter and misery) where Luce claims she loves Daniel because: “she just does”. HAHAHAHAHAHHAHA. It’s a never-end loop of I love him because I love him because he loves me because I love him…………. *brain freeze*

There’s a very pathetic reveal of the evil character, and everything that happens in this book is “destiny”. Can’t understand what the hell Daniel is telling God? IT’S DESTINY! Don’t know why Luce runs back in time? IT’S DESTINY! Don’t understand why you’ve wasted money on this book? YUP…IT’S DESTINY!!! Why is there no character development? Oh this is a hard one…let me think…could it be…destiny?

I think me reading these books and reviewing them, so you don’t have to, is a pretty big public service.

Rejoice, for I have saved you all.

Apologies for the multiple uses of caps lock key. Yes, I was shouting in my head as I wrote this, so outraged I was at all the senselessness.

Ryan Gosling’s ‘Hey Girl…’ – Special needs edition! by @xtremeparnthood

I need to have a fangirl “SSQQQQQQQUUUUUUEEEEEEEEE!!!” at this point. Last night, while skimming my Twitter timeline, my eyes got stuck on a tweet that had the following words:

“Hey girl” … “Ryan Gosling” and… “SPECIAL NEEDS”

*click click click*

WORK FASTER, INTERNET SPEEDS, DAMN IT!

I absolutely love it! Created by Sunday Stilwell, the mom behind the blog, Adventures in Extreme Parenthood, there are currently two blog posts I can find with this meme. These can be found here, and here.

I leave you with one image from her blog…one of my favourites. Please, please click on the links and read the rest…if you deal with special needs on a daily basis, you will identify with them. And looking at Ryan Gosling doesn’t hurt either 🙂

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Autism theories from the Dark Ages in 2012

Warning: Long post ahead. Settle down with a cuppa if interested in autism and/or special needs.

Hark, I hear the Medieval Ages calling…okay, just the 1950s, and Dr Tony Humphreys is ushering it in.

First, read the following article which was printed in the Irish Examiner, which I stumbled across only yesterday:

 

by Tony Humphreys

Do not read this if you have had a difficult day/week!

Monday 6th Feb, 11.30 am. This article has still not appeared on the online version of the paper.

A team of researchers at Cambridge University is currently exploring the connection between high-achieving parents, such as engineers, scientists and computer programmers and the development of their children. Professor Simon Baron-Cohen, who is the director of the Autism Research Centre at the university, says there are indications that adults who have careers in areas of science and math are more likely to have autistic children.

In studies in 1997 and 2001 it was found that the children and grandchildren of engineers were more likely to be autistic and that mathematicians had higher rates of autism than other professions. What is shocking is that Dr Baron-Cohen and the team of researchers are one: assuming that autism is a scientific fact and, two: missing the glaringly obvious fact that if the adults they researched live predominanently in their heads and possess few or no heart qualities, their children will need to find some way of defending themselves against the absence of expressed love and affection and emotional receptivity.

After all, the deepest need of every child is to be unconditionally loved and the absence of it results in children shutting down emotionally themselves because to continue to spontaneously reach out for love would be far too painful. 

Children’s wellbeing mostly depends on emotional security – a daily diet of nurture, love, affection, patience, warmth, tenderness, kindness and calm responses to their expressed welfare and emergency feelings. To say that these children have a genetic and/or neurobiological disorder called autism or ASD (autistic spectrum disorder) only adds further to their misery and condemns them to a relationship history where their every thought and action is interpreted as arising from their autism.

It is frequently the case that it is when these children go to school that their emotional and social withdrawal of eccentricities are noticed, mainly by teachers, who themselves can struggle with how best to respond to these children. An unconscious collusion can emerge between parents and teachers to have these children psychiatrically assessed so that the spotlight is put on the children and not their adult carers’ own emotional and social struggles. Regretfully, the relationship contexts of the childrens’ lives are not examined and their mature development is often sacrificed on the fires of the unresolved emotiuonal defences of those adults who are responsible for their care.

It is important to hold to the fact that these carers do not consciously block their children’s wellbeing, but the unconscious hope of children is that other adults (teachers, relatives, educational psychologists, care workers) that when they are emotionally and socially troubled, it is their adult carers who often need more help than they do. 

Indeed, my experience in my own psychological practice is that when parents and teachers resolve their own fears and insecurities, children begin to express what they dare not express before their guardians resolved their own emotional turmoil.

A clear distinction needs to be made between the autism described by psychiatrist Leo Kanner in 1943 and the much more recently described ASD (autistic spectrum disorder, often referred to as Asperger’s syndrome). The former ‘condition’ was an attempt to understand severely emotionally withdrawn children, the latter concept, which is being used in an alarmingly and rapidly increasing way, is an attempt to explain children’s more moderate emotional and social difficulties. Curiously – and not at all explained by those health and educational professionals who believe that autism and ASD are genetic and/or neurobiological disorders – is the gender bias of being more diagnosed in boys (a ratio of four to one). This bias is also found with ADHD. Surely that gender phenomenon indicates the probability that boys are reared differently to girls and that due to social and cultural factors boys respond to the troubling behaviours of their adult carers in ways that are radically different to girls. 

What is equally distressing is that, as for ADHD, a whole industry involving research, assessment, screening, education and treatment has been developed, despite the absence of any scientific basis or test for either the originally ‘detected’ autism or for the broader construct of ASD.

Sami Timimi, a consultant child and adolescent psychiatrist and two colleagues rigorously examined over 5000 research articles on autism and ASD and found no scientific basis for what they now refer to as mythical disorders. They outline their findings in their book ‘The Myth of Autism’ (2011). The conclusion of their indepty studies is that “there is no such thing as autism and the label should be abolished”.

The authors are not saying that the children are not emotionally and socially troubled. What they are saying is – and I concur with them – that focus needs to be on the relationship contexts of these children’s livews, and to take each child for the individual he or she is and to examine closely the family and community narratives and discover creative possibilities for change and for more dynamic and hopeful stories to emerge for both the children and their carers.

Dr Tony Humphreys is a consultant clinical psychologist, author and national and international speaker. His book ‘All About Children” is relevant to todays article. 

I quite honestly, wanted to curse out loud when I read this. You know what this guy is talking about??? He’s essentially trying to eradicate all the progress the community has made towards understanding autism, it’s going back to the dark ages, when doctors didn’t know what autism was and decided, HEY LET’S BLAME THE WOMAN OF THE FAMILY!

Ever heard of Refrigerator Mom Theory? This was the theory floated around in the 1950s and 1960s that said autism was caused by detached mothers, those who could not emotionally bond with their kids. Often, when reading accounts from the past, you will find parents who say the wife was often blamed for the autism, saying it her coldness that caused the child to retreat within a shell.

This is one of the letters that appeared in the newspaper yesterday as part of the outrage sent in by readers:

‘Psychobabble’ has been discredited for decades

Tuesday, February 07, 2012

The article by Tony Humphreys claiming that autism is caused by “cold” or emotionally distant parents, displays such willful ignorance, lack of understanding and density of inaccurate and offensive statements that it is shocking that the Irish Examiner would publish it.

This kind of psycho-babble has been discredited for decades.

Autism is a biological, brain-based disorder. It is also a genetic disorder. The scientific evidence for these statements is overwhelming. We now know of more than 100 distinct genetic conditions that can result in autistic symptoms.

These conditions affect early development of the brain and researchers are making progress in understanding how that results in the specific symptoms seen in autism, which may range widely in severity.

In contrast, the claims by Mr Humphreys are a throwback to psycho-analytic theories that are completely unsupported by any evidence, as well as being actively damaging and hurtful.

In publishing this waffle, your paper does a disservice to responsible journalism and to all the patients, parents and teachers struggling to cope with the real disabilities caused by this condition.

Kevin Mitchell PhD
Associate professor of genetics and neuroscience,
Trinity College Dublin

 

This appeared in the printed version of the Irish Examiner Tuesday, February 07, 2012

Some other letters linked here: a letter from Kevin Whelan, chief executive at Irish Autism, who said: “What people with autism and their parents need is more research that specifically addresses how the condition occurs — not the defrosting of an assumption over half a century old“; then quite appallingly, a letter of support, from a music therapist no less! I can only imagine parents of children with autism who may be sending their kids to him, won’t anymore. 

And then…a response from the newspaper: “Autism controversy – The right to an opinion“.

I want to tear this apart, but it has already been done exceedingly well at The Voyage, I suggest you read it there.

I got in touch with Grace app creator, Lisa Maree Domican, who said one thing we can do is this:

If you want to write to the press council 

Press Council of Ireland
1,2 and 3 Westmoreland street, Dublin 2
Republic of Ireland.

info@presscouncil.ie

Also in her blog post, Lisa mentions a Twitter protest idea:

Join Twitter and use the hashtag #ilovemyautistic to refute the myths with examples from your own life
eg: “@lisamareedom: #ilovemyautistic son because he cracks me up! And laughing every day keeps me young”
you get the idea. Now go forth and counter!

I know this is a long post, and there’s a lot to get through, but people who are supposedly doctors, and say things like this which can impact the autism community and set us back to where we emerged from, need to know they cannot say whatever they like with impunity, and get away with it.

I shall reiterate for anyone who’s stuck reading this post so far: The refrigerator mom theory is bunkum. It’s bogus, it’s not real, it’s absolute SHIT.

As a personal example: my brother was showered with all the love he could get…he had started talking even. He had his grandparents to spoil him silly, an elder sister who was uber-excited about being with a little baby, a Mom who loved her new child. He was a child brought up in love. He still has autism. After the diagnosis, he was showered with even more love, even though it doesn’t seem possible we could’ve loved him any more. He still has autism.

So if anyone, anyone at all, whether he/she has a professional degree, tells you your child’s autism is your fault, is because you didn’t provide for him/her emotionally, I suggest you walk out of their office/clinic there and then, and name-and-shame them.

Don’t blame yourself; you need to be strong to take care of your child, not beat yourself up over a baseless opinion.

Event roundup: One Night Standup

The doors shut in our face. “You can’t enter right now,” the waitress said.

A posh voice said: “Let them in.” And the gateway into the new local comedy night: One Night Standup, was opened to us.

The posh voice belonged to Hisham Wyne, whose accent, most of us thought, escalated to a grand scale of I’m-Really-From-Blighty from a lower scale of Obviously-a-Fake-Brit, through the night (you know I’m not being mean, right Hisham?). He’s also someone I’ve known for nearly 8 years now, and the organiser of the monthly free event meant to foster the local comedy scene.

When I got the event invite, I wasn’t sure if I would attend. But I needed a good laugh, quite desperately, and I felt I should go to support the community, and a friend. Off I went, wondering whether I would enjoy it. The knowledge of never having been to a live standup show before was also daunting…what if it wasn’t my thing?

We crowded into the inner room of 1Up at the Boutique 7 Hotel and Suites, TECOM (the way to get to the bar is quite interestingly a staircase that looks like the Dubai Metro entrance), and waited. True to Dubai fashion (or desi fashion imported to the country, some might argue), the event started a half-hour after it was scheduled to. But I was glad I got there early; some who landed up late had to be content with perching themselves outside the room and watching the acts on a TV screen.

The room quickly filled up, bursting to the seams – I had to move my high bar chair a few times to prevent brushing against the fellow standing in front of me. The air was rife with the smell of chips, ciggies and booze. We waited.

And then it began. Hisham opened the night, poking fun at himself and more. Then after pulling chits out of a fishbowl, the comedians moved on the stage to make us laugh. After a few acts, there was a 15-minute break with an excellent live acoustic performance (what was the singer’s name? He was so good. Plus later on the band said they were from north of England, which is my home ground…or…err…study ground), and then back to comedy it was.

It’s hard to do that you know – comedy. Making your friends laugh is one thing, but standing in front of a crowd – a hard-to-please crowd – is another. There were, quite honestly, varying degrees of success. Some comedians had me laughing so much, I was worried I’d topple off my high seat in pure mirth (Hisham, put up some pics from the night and tag the comedians; I want to know which performers were my favourites!).

A mutual consensus was reached between me and my friends: the Emirati comedians were insanely and excruciatingly good. Perhaps the cultural relevance helped, but they knew how to play the audience, knew how to get our stomachs knotted up in laughter. Well done. We even loved the opening act: a Pakistani (was his name Salman Qureshi?) whose Superhero-in-Dubai jokes were pretty hilarious. I know I’ve missed a lot of you, but I was too busy balancing myself on my chair trying not to fall off in doubled up laughter to take notes or photos. Overall, an excellent night out and time well spent.

Now to scrub away the reek of cigarette smoke from my hair.

Muchos gracias to my fellow tweeps – @VonSkunk, @Lenaro, @DaddyBird, @Azabith and @DerrickPereira – for the company.

For more information, check out One Night Standup on Facebook.

What happens if you fall in love with a writer?

Thanks to @dubaitara for linking to this one…absolutely love it!

What happens if you fall in love with a writer?

karenfelloutofbedagain:

Lots of things might happen. That’s the thing about writers. They’re unpredictable. They might bring you eggs in bed for breakfast, or they might all but ignore you for days. They might bring you eggs in bed at three in the morning. Or they might wake you up for sex at three in the morning. Or make love at four in the afternoon. They might not sleep at all. Or they might sleep right through the alarm and forget to get you up for work. Or call you home from work to kill a spider. Or refuse to speak to you after finding out you’ve never seen To Kill A Mockingbird. Or spend the last of the rent money on five kinds of soap. Or sell your textbooks for cash halfway through the semester. Or leave you love notes in your pockets. Or wash you pants with Post-It notes in the pockets so your laundry comes out covered in bits of wet paper. They might cry if the Post-It notes are unread all over your pants. It’s an unpredictable life.

But what happens if a writer falls in love with you?

This is a little more predictable. You will find your hemp necklace with the glass mushroom pendant around the neck of someone at a bus stop in a short story. Your favorite shoes will mysteriously disappear, and show up in a poem. The watch you always wear, the watch you own but never wear, the fact that you’ve never worn a watch: they suddenly belong to characters you’ve never known. And yet they’re you. They’re not you; they’re someone else entirely, but they toss their hair like you. They use the same colloquialisms as you. They scratch their nose when they lie like you. Sometimes they will be narrators; sometimes protagonists, sometimes villains. Sometimes they will be nobodies, an unimportant, static prop. This might amuse you at first. Or confuse you. You might be bewildered when books turn into mirrors. You might try to see yourself how your beloved writer sees you when you read a poem about someone who has your middle name or prose about someone who has never seen To Kill A Mockingbird. These poems and novels and short stories, they will scatter into the wind. You will wonder if you’re wandering through the pages of some story you’ve never even read. There’s no way to know. And no way to erase it. Even if you leave, a part of you will always be left behind. 

If a writer falls in love with you, you can never die. 

I love this.