#1000speak – Compassion

On 20th February 2015, bloggers from across the globe wrote and posted pieces about compassion in a drive to flood the Internet with messages of kindness and positivity.

Today is 21st February. A day late and dollar short, here’s my little contribution to the wave of compassion.

About a week ago, I was queueing at the checkout in our local Aldi store. Boy (my 2 yr old whirlwind) was screaming in his pushchair, Melon (my 5 yr old autistic daughter) was darting back and forth across the store overwhelmed by the business and packaging, unable to focus on any instruction I gave her. We hadn’t slept in three days courtesy of the autism-relate sleep problems that are a BIG feature of life in our household.

As my bleary eyes drifted across the chaos, my focus settled on the man behind me. Maybe in his 50’s, maybe older, maybe even younger. It was hard to tell – unshaven, dishevelled, crumpled, trembling, not making eye contact, clutching at a large bottle of strong cider like his first-born child, as though his life depended on it. Which it probably did. It was 9.30am, The stench of alcohol seeped out of him and drifted to where I was standing. Other customers gave him a wide berth, avoided looking at him. He was less than them, less human. He seemed oblivious to it all.

I work in the addictions field, I see everyday people whose lives are torn apart by alcohol and substance dependency. I hear their heartbreaking back stories, I try to help them find their way back. Over the noise form Boy and my monitoring of Melon, I tried to looked at the man behind me through curious, compassionate eyes. Who was he? Did he have family? Did he have dreams – now or ever? Was his health suffering? His liver? Was he getting treatment, did he even care? What went wrong to lead him here to a budget supermarket at 9.30am sweating and clutching a bottle of the one thing that he KNEW would stop the shaking?

Then the queue inched forward and I realised I hadn’t unloaded my shopping or left my basket in the correct place. Not usually an issue, but the checkouts at Aldi are cramped fast-moving places, Boy was still screaming and Melon (who had drifted back to us) was trying to grab other people’s shopping items off the conveyor belt. My attention had wandered and chaos was temporarily upon us.

A voice said “they get under your feet sometimes don’t they? I’ll take that for you”. I turned to the man behind me, still shaking, still with the scent of alcohol rolling off him, but making eye contact now and smiling. He helped me unload my items, took my basket and then wandered across the store to put it in the correct place. Giving up his place in the queue as he did so. “Thank you” I said at his retreating back. Don’t know if he heard me over the noise Boy was making. We paid, we packed, I couldn’t see the man any more. We left.

Compassion. Definitions say it is “the emotion that one feels in response to the suffering of others that motivates a desire to help. Compassion is really the act of going out of your way to help physical, spiritual, or emotional hurts or pains of another”.
To me, compassion, to whatever extent we are able to express it, is part of what makes us human.

To the man behind me in the queue:
Whatever happened in your life, whatever went wrong, whatever you lost; however much you are shunned and isolated by strangers and friends as you muddle through your days; you alone noticed my small moment of struggle- you were kind, you helped.

For your small moment of compassion, Thank you.

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Look for the helpers

“When I was a boy and I would see scary things in the news, my mother would say to me, “Look for the helpers. You will always find people who are helping.” – Fred Rogers

There’s been a lot to be scared about in the news over the last few days. Violent events in France have led to the death of 17 people, 20 when you count the perpetrators who were themselves killed by French police. French society is shaken to the core, Jewish communities feel targeted and vulnerable, and Muslim communities face discrimination and retaliation from those who seek to judge an entire faith on the brutal actions of a small minority who have twisted, distorted beliefs.

So much to be sad about, scared about, sick about.

Look for the helpers.

That’s what I did, when I started to read the news accounts of the recent violence. And sure enough, there was a helper, and his story left me with a feeling of hope and comfort.

Lassana Bathily, a 24 year old Muslim man from Mali, living and working in France. He was employed at the Kosher supermarket where the second of two hostage situations occurred. When an armed man broke into the store, Lassana helped a number of customers, including a baby, into a freezer to hide. He then left the shop via a service elevator to get help. He was initially arrested by police who believe he was working with the suspects. Once released, he gave police details of the shop layout, and when the hostage situation finished, he was hailed as a hero.

A helper.

But the power of Lassana’s story lies in the detail. Here was a Muslim man, employed by a Jewish business, in a kosher supermarket. When danger struck, his first action was to get his (presumably Jewish) customers to a place of safety. He was first arrested by the police, then ended up helping them.

In a week where Faith was used to justify violence, to select targets for violence, what stood out for me was that a man acted with a lot of courage to save the lives of others. Their common humanity was more important than the differences in their belief and culture.

And that is exactly the way things should be.

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Now, where did I put my Christmas spirit?

My Dad loved Christmas. The moment the calendar changed to December the Festive music cassettes would be unearthed, and he’d start a Mexican stand off with my Mom about when he was allowed to put the tree up. The sounds, the smells, the cooking, the build up – he revelled in all of it, and he passed that same sense of enjoyment onto me.

There’s never been a Christmas yet where I haven’t felt at least some excitement, some sense of anticipation.

Until this year.

This Christmas, the impact of Autism has been far more apparent than it was last Year. Melon’s anxiety levels have been far higher, her need to order and arrange toys (a sign that she is processing life events) has been all consuming. Since May, even with melatonin, She has been waking for long periods during the night. With the added disruption of Christmas, she now frequently doesn’t even get to sleep until after 11pm.

Our little girl is struggling, and we are exhausted.

So much of her anxiety stems from the changes associated with Christmas – disrupted school routine; more social events; different music, foods and smells leading to sensory overload; her struggle to grasp the passage of time (“everyone is talking about Christmas so it should be Christmas already. Where are the gifts and the food? Have I missed it?”).

As a result, I’ve approached Christmas differently. We haven’t decorated yet, and I’ve kept Festive activities to a minimum. Treats, sweets and candy are being strictly limited (sugar makes Melon irritable and emotional). I haven’t even contemplated getting out Christmas CD, which she used to love so much.

Those memories and experiences that made Christmas such a magical part of my own childhood – I wanted to pour into my own children’s experiences. But, I’ve had to let go of them to an extent this year. And this season – Christmas – it’s always been a time where I’ve been able to reconnect with my memories of my Dad. That hasn’t happened yet.

It’s all affected me, more keenly than I expected.

My spirit is at a low ebb, I feel like my core reserves have been emptied. The days have become things to be gotten through, where giving anything other than the bare minimum required in any situation feels like climbing a mountain. The very thought of trying to orchestrate Christmas with the gifts, cooking, visiting….of navigating the disruption of the school holidays – it feels overwhelming.

At the same time,we are in the process of searching for a special school placement for Melon. Taking her out of mainstream feels like a huge decision, one that we’re navigating with little direction and support, guided by gut instinct. The choices we make will have implications for her social contact, for the logistics of our lives, for Melons future life chances…

It might (hell, it DOES) sound like I’m hosting my own pity party. Complete with a lacklustre buffet and no DJ. But there it is. I’m exhausted, I’m overwhelmed. All I want to do is eat and sleep. I am far from being the wife and Mother I want to be and should be. Christmas cheer has been in short supply round here.

But it’s not all doom and gloom.

One thing sparked a Christmassy feel inside me, and funnily enough it’s all thanks to autism. I have made some very dear friends online since I began blogging about autism. Other parents and families where autism and special needs are woven into the tapestry of their lives. Like they say – We are none of us are alone on this journey.

So, this year, I sent out overseas Christmas cards to people who I will likely never meet in person. Our relationships exist solely through photographs and typed words. These people are in my life every day, and the humour, companionship, encouragement and support they have bought to me simply can’t be measured. I found happiness in writing those cards (there is something so personal about handwriting), in sitting with Melon as she drew pictures to put in the envelopes. I chuckled as I filled one of the envelopes with glitter, I covered my kitchen in flour in the process of filming a collaborative christmas video….

Today would have been my Dads 72nd Birthday – Happy Birthday Dad. In light of that, I’m going to pull my head out of my ass, channel some of your legendary Christmas spirit and give my family back the me they deserve.

Starting right now.

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I can hear spiders – guest post by Fairies to Pharoes

(This guest post was written by a follower of my Facebook autism blog
She’s a teacher, an autism Mom and a simply beautiful writer….)

“I can hear spiders…”
Sorry? I look up, confused.
“I can hear spiders. I see them on the wall and when they move they make a tapping, scratching sound. Like a pencil moving across paper.” The little girl looks down at her feet, seemingly unaware of the magnitude of her words.

How is that even possible? She seems so certain.

The little girl talks for another hour about spiders and other insects in great detail, painting a vivid and extraordinary tale of their sounds and movements. I listen without speaking, unsure as to how to respond. I feel like I am in a dream landscape, nothing is familiar here; there are no points of reference.

Once I have left the room, I struggle to connect with reality once more. I still feel like I’m dreaming. There is nothing of the ordinary about this child. I must make some sense of this surreal narrative; I decide to email an authority in the field and, almost immediately, a reply drops into my inbox.
“The closest I have come to understanding this kind of autistic experience is something called synaesthesia. Hope this helps.”

Synaesthesia. I have absolutely no idea what that means. Synaesthesia – how do you even say it? I hit google and, sure enough, there are 497,000 results returned. I navigate to the UK Synaesthesia Association and receive the following explanation:
Synaesthesia is a truly fascinating condition. In its simplest form it is best described as a “union of the senses” whereby two or more of the five senses that are normally experienced separately are involuntarily and automatically joined together.

Wow. Sounds just like autistic sensory jumbling.

More reading takes me on an incredible journey through numerous kinds of synaesthesia: “Lexical-gustatory Synaesthesia” where words can taste of specific foods, “Mirror-touch” where watching someone reach up and touch their chin makes you feel the sensation on your own, “Misophonia” where certain sounds trigger strong emotions such as hate and anger.

Misophonia. Could this be why Harry was so upset at the fairground? What if the sound from the ride was not too loud after all; what if it was flooding him with negative emotions? And the crying when he listens to certain pieces of music; maybe this is related too?

My mind begins to generate endless possible explanations for the autistic behaviours and reactions I have seen; as if numerous pieces of a puzzle are fitting into place all at once.

I move on to reading about autistic savants and the suggestion that their great abilities may arise from a combination of autism and synaesthesia; a study by an eminent researcher, Professor Simon Baron-Cohen, claims that 1 in 5 autistic adults report synesthetic-like experiences of the world.
How many children with autism have synaesthesia but are unable to express how it feels or how it affects them? How many are unaware that their experiences are vastly different? We need to try and understand this more; build more bridges between this amazing world of autistic super senses and our own.
Eventually, I stumble across a reference to “Flicker-motion Synaesthesia” which seems to explain the narrative which first brought me here; a synaesthesia where seeing visual motion induces sound. I am later to read that this kind of ability could be linked to our hunter gatherer past. Truly fascinating. Everything the little girl had said now made sense. What an extraordinary and beautiful way in which to interact with the world.

I smile to myself. She can hear spiders.

For more information about synaesthesia please visit http://www.uksynaesthesia.com/ or to watch a documentary about synaesthesia visit http://www.dailymotion.com/video/x1olkn1_synaesthesia-derek-tastes-of-earwax-horizon_tech

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sky castles and crystal balls

I try not to think about futures, about certainties, about “what if?” – those thoughts create waves of anxiety that wash away my ability to cope with the everyday reality of our life. They make it harder for me to prioritise. Sometimes though, I get blindsided and the thoughts rush in. Like recently, during an impromptu trip to the shop after school.

Melon went to take something from the hand of a lady stood behind us – she was holding some coloured paper, Melon thought it was sweets. I asked Melon to stop, and she drifted away to organise toys on a shelf.

I apologised. The lady stood quietly, then said:

“I’ve got learning difficulties. Has she got learning difficulties?”

“sort of, she’s autistic”

A look of hurt and pity passed across her face, then a look of understanding…

“oh, Ok, that’s why she wouldn’t look at me, and that’s why she likes to organise things”

My goodness, she gets it. Is she on the spectrum? Has she lived with autistic people?

“yes, that’s right. She can listen better if she’s not looking, and the organising helps her stay calm”

“my name is jillian. I’m moving house soon. We have to move because there’s only two of us in our home and I’ve got no one to talk to”

Why? Why have you got no one to talk to? What happened to your family, your friends? Are the staff kind to you?

“will the new house be better?”

“yes, I went to see it. It’s bigger and nicer.”

“Do you think you’ll be more happy there Jillian?”

I hope you are, it must be awful to want to talk and to have no one.

“I will. It’s going to be better. Is Melon happy?”

“yes, she is Jillian. Sometimes she gets sad, but she’s mainly happy”

“where will she live when she grows up?”

Pause. All of a sudden there’s a lump in my throat.

Jillian, I don’t know. I really don’t. The truth is, we had plans and dreams for Melon. We built castles in the sky. But they were the wrong castles, they weren’t meant for her. When we got her diagnosis last year we had to let the sky castles drift away. It was tough to let go of them, they were precious to us at one time.
But we couldn’t keep them, we had to move on, we had to let go.
Since then we haven’t built castles, we’ve been living day by day, fighting fires, learning, assimilating. We gather the moments of joy and progress, and form them into a shield that we hold against our hearts, to help us through the difficult times.

“I don’t know jillian. That’s a long time away. It depends how much she can learn at school, and how good she gets at looking after herself”

It’s only recently that we’ve started to think of futures again, to make plans, but this time we’re doing them for Melon, not for us. We get overwhelmed sometimes by the enormity of some of the decisions we have to make – schooling, interventions, where we live….

“well I hope she’s happy like I’m going to be. I hope people love her”

There’s that lump again. Blink away the tears.

“that’s really kind jillian, thank you”.

Jillian – you know what I would LOVE? And this may seem strange to you. I want Melon to be able to do what you are doing right now. I want her to be able to connect, to have some independence, to understand the value of friendship, love and happiness, to have plans and dreams of her own, to seek understanding, to trust.

As we were paying, jillian trapped her finger in the door. She cried, like a little child would cry. I talked her through it, till she calmed down. Then she went off to wait for her bus, a small determined figure, still clutching that little bundle of coloured paper. We headed to the car.

What is going to happen in the future? For Melon, for all of us? We don’t know. All we can do is our best now to help her learn the skills and knowledge to live as independently as possible.

Will she be happy? Will she be loved?
My god, I hope so.
With every fibre of my being.

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But he doesn’t LOOK like Seinfeld….

During the last week, in an interview for NBC, the comedian Jerry Seinfeld discussed his growing realisation that he is on the autism spectrum.
In a week where the the other major autism related headline has been the tragic killing of an autistic child by his Mother, you’d maybe expect the Seinfeld story to slip quietly by, raising little but a passing moment of interest.

But no. Already there have been cries of frustration and outrage, concern that Jerry’s disclosure will divert funding, attention and awareness from those autistic people and families who live life at a different part of the spectrum.

In particular, Jerry’s statement that he understands autism to be a “different mindset” rather than a disorder has drawn criticism that he is belittling the struggles of others, and detracting from the real insurmountable challenges that autism throws into so many people’s lives.

Let’s slow down for a minute.

Jerry Seinfeld was not claiming to speak for the experiences of anyone other than himself in his interview. He wasn’t trying to be a mouthpiece for the whole community. He was talking about a deeply personal realisation, in public, for the first time.

Will his revelation warp the public perception of what autism is? I seriously doubt it. The very reason that so many autism families get the “he/she doesn’t look autistic” statement levelled at them time and again is this: in the eyes of Joe public, autism looks like rain man, or like a non verbal, hand flapping, vocally stimming child wearing ear defenders. No one would look at that child and think “hey, I bet you have life SO easy. There’s no WAY you’re gonna need help or support to make it in this world. I bet you do just fine in the classroom, you won’t be needing any flexibility from the teaching staff”.

Yet that is precisely the experience of so many children, and adults at the higher end of the spectrum. Because they appear, superficially, to cope in social situations, because they can communicate verbally, because they form friendships and relationships, there is an assumption that they don’t struggle or require support.

Nothing could be further from the truth. Consider if you will the following:

– the seven year old boy who desperately wants friends but can’t seem to make them, who gets moved down to the bottom set at mainstream school because he can’t work quickly enough.

– the 14 year old boy who is always on the periphery of social groups, but always the at the centre of their jokes. Painfully aware of his differences, feeling as though they are his failings.

– the 25 year old woman sobbing at her computer desk because she just read a Tania Marshall article and found echoes of herself and her battles throughout.

– the 38 year old woman with tears running down her cheeks as she struggles to make sense of her child, reframe her understanding of herself and explain all this to her partner who doesn’t seem to able or willing to “get” any of it.

– the 55 year old man who, upon retirement, tips over the edge into depression as the structure and routine that he never knew he relied upon suddenly dissolves.

All of them are real people. All of them Aspies, or high functioning autistics.
They speak, toilet themselves, form relationships, may have their own families, hold down jobs. None of this means that their life is easy, or that autism does not affect them.

My hope from Seinfeld’s disclosure is this:

~That adults in their 20’s, 30’s and older who come to feel that they may be on the spectrum seek diagnosis (if they want to) and become more confident about raising the issue with their friends and families.
~That it will shake the narrow perception of autism in the eyes of the public, so more people understand that Aspies have struggles too.
~That it will inspire young autistic people and advocates, to help them realise how much is possible.
~That it will shine a spotlight, for whatever amount of time, on to autism and the issues of our community, and that we use the spotlight to profile our priorities. Exactly the way we should have done in the wake of the Autism Speaks “This is autism” campaign this time last year.

Enough drawing lines in the sand. Jerry isn’t going anywhere. Neither is autism. His revelation will give this whole community some airtime. Let’s use it constructively.

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Response to the Death of London McCabe

(((Trigger warning: this post discusses the death of London McCabe, a 6 year old autistic boy, killed by his Mother Jillian when she threw him from the Yaquina Bay Bridge in Oregon USA)))

I don’t usually write about these cases, they can turn into bitter debates and futile slanging matches between various parts of the autism community.
Nevertheless, something has moved me to write about this one.

To kill your child is wrong, it is abhorrent, it is unacceptable.

The parent in me says “this is tragic, it’s beyond comprehension. Don’t try to get inside the head of this case”

The professional in me says “stop. That’s the wrong approach. We NEED to try and understand this”.

As a psychiatric nurse for over a decade, I’ve been involved in cases where people in the care of services have died. In every such case, the evidence, the actions and the people involved are painstakingly reviewed so that mistakes can be identified, lessons learned and responsibilities redefined. It is a difficult reflective process, but it is part of the responsibility of the service and the professionals involved to do so.

Similarly, to reflect on the death of London McCabe, to try and understand what happened, why, and what was missed is not to condone, justify or excuse the actions of his Mother. It is not to dehumanise him, or to minimise his tragic and violent death. It is a way to make everyone – from services down to individuals – aware of how they could have acted differently, to try and minimise the risk of this ever happening again.

– Mental health services: had they offered appropriate treatment and support to Jillian McCabe? Were the necessary risk assessments conducted and risk management procedures put in place?

– Were the authorities responsible for safeguarding children involved? Were the correct protective procedures being implemented? Were they aware of the nature of Jillian McCabe’s mental health problems and the potential risks associated with this?

– Other organisations working with the family – schools, autism services, health services: were they aware of the pressures existing in the family home? Were they in dialogue with the family, and had they asked the family what they needed? What support measures were in place? Had they reported any safety concerns to the necessary authorities, and followed these reports up? Had the family been made to feel that it would be ok to admit that they could no longer keep their child safe? Had alternative options been discussed and made available?

– Multiagency working: Were the various services communicating with each other? Did they work as a team to bring together all the information so the case could be viewed in its entirety, rather than snapshots?

– Family, friends and the community: were they aware of any concerns? Had they been there to listen? Had they seen warning signs and taken steps to notify the authorities?

– Jillian McCabe: had she really been honest about how desperate she was feeling? Had she begun to feel the warning signs (because there would have been some) in herself, that her ability to cope was coming to an end, had she talked to doctors, psychiatric services, the police – anyone. Had she tried to make a plan about how she could keep herself and London safe if she was no longer able to trust herself? Had she shared that plan? Did she have any other option, Any other course of action she could have taken?

Responsibility. Down the line. From organisations to individuals.

This is not a comprehensive review of all the factors, I don’t know all the details of the case, I never will, but I do know this: There are always ways that services could have done better, there are always signs that things are starting to go wrong, and there is ALWAYS another option than taking the life of your child.

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