As I child I learned very early on
That there is no one there.
No one came when I cried
No one came when I fell
No one came when I hurt.
You were always there, but these things were always my fault.
So clumsy! So easily upset!
Or "I know you how you feel
but my pain is MUCH, MUCH worse"
Be in thrall to me
Your illness transcends all
it's the sky of my childhood,
Everything is lived through its storms
Everyone reads the weather better than I
And blames me for not wearing a better coat
Or not knowing when to run
Or being me.
Thursday, October 11, 2018
I'm tired
I'm tired of being frightened of late night phone calls
Tired of weary voices telling me you're sick, you're unwell
Tired of letters inviting me to be involved in your care
Tired of the disappointment when I can't
Tired of the relentless anger and fury
Tired of being blamed
Tired of the number of times you threatened suicide and didn't
Tired of the blood pouring out of my nose and my glasses breaking - I was 8
Tired of caring and caring and looking for love
Tired of validation through hate
Tired of seeing you piss on the bedroom floor
Tired of you hearing voices
Tired of the unending fear and suffocating protection
Tired of the hiding
Tired of the shouting and slapping
Tired of counting the days until the next assault
Tired of mapping your moods in my diary
Tired of self-protection to deflect the abuse
Tired of being resented
Tired of not being loved
Tired of being sworn at, beaten and madness
Tired of fear
Tired of hatred
Tired of you.
You were never my mother, only my jailer.
And I'm free
Tired of weary voices telling me you're sick, you're unwell
Tired of letters inviting me to be involved in your care
Tired of the disappointment when I can't
Tired of the relentless anger and fury
Tired of being blamed
Tired of the number of times you threatened suicide and didn't
Tired of the blood pouring out of my nose and my glasses breaking - I was 8
Tired of caring and caring and looking for love
Tired of validation through hate
Tired of seeing you piss on the bedroom floor
Tired of you hearing voices
Tired of the unending fear and suffocating protection
Tired of the hiding
Tired of the shouting and slapping
Tired of counting the days until the next assault
Tired of mapping your moods in my diary
Tired of self-protection to deflect the abuse
Tired of being resented
Tired of not being loved
Tired of being sworn at, beaten and madness
Tired of fear
Tired of hatred
Tired of you.
You were never my mother, only my jailer.
And I'm free
Sunday, April 16, 2017
Yesterday's emotions have draped themselves, cloak like around my shoulders.
The material is hard and rough and scratches my skin.
Staring at the pricks of blood I see a map of grief
The continent of depression looms large
but there are islands of hope and "it's not so bad" and "shrugs"
I set sail accordingly.
The material is hard and rough and scratches my skin.
Staring at the pricks of blood I see a map of grief
The continent of depression looms large
but there are islands of hope and "it's not so bad" and "shrugs"
I set sail accordingly.
Friday, November 11, 2016
Remembering the Dead.
How quickly the two worlds collide, rip asunder and we stand in the gap between now and the past.
Heads bowed we remember the dead, the suffering, the sick, the old.
In that sacred space between now and the next moment, we stand and remember.
Then, at the call of the horn, the two worlds are one again, the moment is lost and carries on
The dead are forgotten, back in the graves.
The sick are ignored, the old ones lost.
Their voices half remembered, no longer as bravery but as raised in complaint
Against the wrongs of this world.
Fascism rises
Heads bowed we remember the dead, the suffering, the sick, the old.
In that sacred space between now and the next moment, we stand and remember.
Then, at the call of the horn, the two worlds are one again, the moment is lost and carries on
The dead are forgotten, back in the graves.
The sick are ignored, the old ones lost.
Their voices half remembered, no longer as bravery but as raised in complaint
Against the wrongs of this world.
Fascism rises
Monday, April 11, 2016
Meteorite
Falling from the sky, I hesitate to catch you.
Burning the ether, no one can miss you.
So fast, so slow, your trajectory terrifies.
I wait until you fall into my arms,
To sleep.
(Waiting for my child to be calm when in the grip of a meltdown).
Burning the ether, no one can miss you.
So fast, so slow, your trajectory terrifies.
I wait until you fall into my arms,
To sleep.
(Waiting for my child to be calm when in the grip of a meltdown).
Friday, July 17, 2015
Joy in small things
Joy in small things
Minute, tiny, twinkles of thought.
In structure and lines
In conversations bigger than the world
In too many things to think at once
In ordering
In beauty that strikes me to the core
Rendering me breathless with bliss
In shapes and stars and dates
In watching the breath and calming the mind
In watching the mind dance on the beauty of thought
In textures soft and smooth and fur
In music, expressing love
In happiness
Minute, tiny, twinkles of thought.
In structure and lines
In conversations bigger than the world
In too many things to think at once
In ordering
In beauty that strikes me to the core
Rendering me breathless with bliss
In shapes and stars and dates
In watching the breath and calming the mind
In watching the mind dance on the beauty of thought
In textures soft and smooth and fur
In music, expressing love
In happiness
Monday, July 06, 2015
To Mum
Trapped behind glass,
Breath is constricted by the smudge of emotion,
Words distorted by love that hurts.
I wish my happiness was not such a barrier for you,
I wish we could be happy together,
I wish for the joy from my childhood.
I wish the woman I knew from years ago,
Could still come and comfort me, kiss me, chide me.
Instead this shadow of haunted dreams,
That you seem determined to become
I wish this hadn't been my creation and that you were free to have been that in the first place.
The first place being before I was born.
I wish I could free you,
I can't help you,
I do love you.
Breath is constricted by the smudge of emotion,
Words distorted by love that hurts.
I wish my happiness was not such a barrier for you,
I wish we could be happy together,
I wish for the joy from my childhood.
I wish the woman I knew from years ago,
Could still come and comfort me, kiss me, chide me.
Instead this shadow of haunted dreams,
That you seem determined to become
I wish this hadn't been my creation and that you were free to have been that in the first place.
The first place being before I was born.
I wish I could free you,
I can't help you,
I do love you.
Saturday, July 04, 2015
No Man is an Island
No man is an island, no woman a continent.
No child a violent storm that rips the world apart,
No parent alone, no child destroyed,
Families,
Love
Together.
No adult alone and housebound
Locked into the bricks of the walls of their home by the threat of the world outside.
Nobody so isolated that non existence beckons them.
No child without a future
No person without hope.
How?
Come together in quiet
Listen to the voices that cannot speak
Respect the gaze that flickers like a candle
In peace let ears rest and words be heard
In love come together
Share ourselves and our lives
Share fear, and panic
Share love, and symbols and hope
Share and be strengthened by sharing
Share, accept and love.
Find ourselves in the eyes of others and in the heart of ourselves
Love makes us one.
No child a violent storm that rips the world apart,
No parent alone, no child destroyed,
Families,
Love
Together.
No adult alone and housebound
Locked into the bricks of the walls of their home by the threat of the world outside.
Nobody so isolated that non existence beckons them.
No child without a future
No person without hope.
How?
Come together in quiet
Listen to the voices that cannot speak
Respect the gaze that flickers like a candle
In peace let ears rest and words be heard
In love come together
Share ourselves and our lives
Share fear, and panic
Share love, and symbols and hope
Share and be strengthened by sharing
Share, accept and love.
Find ourselves in the eyes of others and in the heart of ourselves
Love makes us one.
Thursday, June 25, 2015
Autistic Skin (A life in feeings)
Where the world ends and we begin is a curious thing,
We feel the world through our bones , drape ourselves in it's beauty, clothe ourselves in its majesty.
Sometimes we sense the misery of our friends seeping into feet and chilling our heart
We find ourselves too frozen to answer, powerless to act and cry teas of ice
Sometimes the heat of their happiness burns our skin, charring our embrace, searing our lips just as we want to reach out and congratulate them.
How much more soothing is a woodland walk, tree's lit by dappled sunlight and the dancing of birdsong in our ear drums. How much safer to feel the drumming of our feet on tarmac in the deepest part of our belly, how much wider is the world when we encompass it.
The white branches in our foreheads grow tall and strong, they cover our gaze and we peak out through them.We curl up in their embrace, the twisting of the limbs as they reach out through our senses gives us incredible beauty, incredible sadness, incredible joy.
We feel the world through our bones , drape ourselves in it's beauty, clothe ourselves in its majesty.
Sometimes we sense the misery of our friends seeping into feet and chilling our heart
We find ourselves too frozen to answer, powerless to act and cry teas of ice
Sometimes the heat of their happiness burns our skin, charring our embrace, searing our lips just as we want to reach out and congratulate them.
How much more soothing is a woodland walk, tree's lit by dappled sunlight and the dancing of birdsong in our ear drums. How much safer to feel the drumming of our feet on tarmac in the deepest part of our belly, how much wider is the world when we encompass it.
The white branches in our foreheads grow tall and strong, they cover our gaze and we peak out through them.We curl up in their embrace, the twisting of the limbs as they reach out through our senses gives us incredible beauty, incredible sadness, incredible joy.
Tuesday, June 16, 2015
After a summer storm
When the wind is calm
And the trees unbowed,
We find leaves scattered on the floor
And a million hopes for summer gone
The tree's weep, and so do we.
Winter comes,
Hides all with a thick blanket of snow.
We freeze, the comfort paralyses.
Spring
The tree's start to bud
And our heart's lift.
And the trees unbowed,
We find leaves scattered on the floor
And a million hopes for summer gone
The tree's weep, and so do we.
Winter comes,
Hides all with a thick blanket of snow.
We freeze, the comfort paralyses.
Spring
The tree's start to bud
And our heart's lift.
Saturday, September 27, 2014
How a meltdown feels
Assault
Caught in an explosion of feeling I lose my name.
I see snatches of peace, parts of initials, someone is speaking making the air tremble.
Straining my ears against the glare of the world, the cacophony of bird song, tapping of shoes, keyboards, phones, noises, I hear my feelings roaring.
I identify the maelstrom through which I am working is the thunderclap of misunderstood emotion.
An explosion of feeling that erodes my soul.
When it's beautiful I am one with world, to bring me back from the skies and singing too quickly by beeping a horn is brutal and cuts like a knife.
When it's ugly when my child is crying or hurt, I cower underneath black clouds and can see no way out, panicking and churning the swirls of air to find my way out.
Yesterday my child was in danger, today my whole body has erupted in the joy she is safe, and the fear of the maybe's., the what if's and the what will be's?
Who knew that feelings were body wide, soul wide, did not merely make one feel, but made one be. Simply be one solitary thing, but then another comes colliding with the first, a sound is heard,a smell glimpsed, associations are made, randomly, sensibly, the eyes are full and stretched to brimming with the everything of it all.
Call me back, help me label it.
Set it free, set me free.
Caught in an explosion of feeling I lose my name.
I see snatches of peace, parts of initials, someone is speaking making the air tremble.
Straining my ears against the glare of the world, the cacophony of bird song, tapping of shoes, keyboards, phones, noises, I hear my feelings roaring.
I identify the maelstrom through which I am working is the thunderclap of misunderstood emotion.
An explosion of feeling that erodes my soul.
When it's beautiful I am one with world, to bring me back from the skies and singing too quickly by beeping a horn is brutal and cuts like a knife.
When it's ugly when my child is crying or hurt, I cower underneath black clouds and can see no way out, panicking and churning the swirls of air to find my way out.
Yesterday my child was in danger, today my whole body has erupted in the joy she is safe, and the fear of the maybe's., the what if's and the what will be's?
Who knew that feelings were body wide, soul wide, did not merely make one feel, but made one be. Simply be one solitary thing, but then another comes colliding with the first, a sound is heard,a smell glimpsed, associations are made, randomly, sensibly, the eyes are full and stretched to brimming with the everything of it all.
Call me back, help me label it.
Set it free, set me free.
Tuesday, April 01, 2014
Fancy some shoes?
“Where would I find enough leather
To cover the entire surface of the earth?
But with leather soles beneath my feet,
It’s as if the whole world has been covered.”
― Śāntideva
Shantideva was an ancient Buddhist Saint. I think he has a point don't you? It's autism awareness day/month and there's the usual dialogue between awareness and acceptance. Both are important, and we all need to practice both - not just for autism, but heart disease, mental illness, cancer, ME, miscarriage, abuse survivors and a million, million other things we as humans are prey too.
What would be really great as well as the acceptance campaigns, would be our own offerings of not knowing, failing to understand but trying to anyway, listening to others and our judgements, and doing our best to notice but move past the latter. As an autistic adult I feel it's imperative to offer both my successes and my failures as part of my autism "story". There is great happiness in being autistic, great love to be found in the most unusual of places, great peace and clarity in just being. I want to offer it all rather than just showing the rocking child in the corner - these are snapshots of a life, not the whole of it.
Awareness is wonderful, so is acceptance. Will we find a world covered in leather, or will we take a step first and meet people coming the other way?
To cover the entire surface of the earth?
But with leather soles beneath my feet,
It’s as if the whole world has been covered.”
― Śāntideva
Shantideva was an ancient Buddhist Saint. I think he has a point don't you? It's autism awareness day/month and there's the usual dialogue between awareness and acceptance. Both are important, and we all need to practice both - not just for autism, but heart disease, mental illness, cancer, ME, miscarriage, abuse survivors and a million, million other things we as humans are prey too.
What would be really great as well as the acceptance campaigns, would be our own offerings of not knowing, failing to understand but trying to anyway, listening to others and our judgements, and doing our best to notice but move past the latter. As an autistic adult I feel it's imperative to offer both my successes and my failures as part of my autism "story". There is great happiness in being autistic, great love to be found in the most unusual of places, great peace and clarity in just being. I want to offer it all rather than just showing the rocking child in the corner - these are snapshots of a life, not the whole of it.
Awareness is wonderful, so is acceptance. Will we find a world covered in leather, or will we take a step first and meet people coming the other way?
Monday, March 03, 2014
Sadness and joy. Spending time with my mum in hospital, who is recovering from life threatening gut perforation. She can't speak much as she is still on a lot of morphine. For the first time ever I am able to have a conversation without worrying about getting it right, wrong, shouted at etc. So sad I will never have this again. Joyful to be able to feel that pure love that a child feels for it's parents, when all the abuse is swept away. Bittersweet to realise mum's path is that of severe mental health and that all the interventions over the years haven't managed to shift it. What a life, what is a life without happiness?
Saturday, February 08, 2014
Theory of Mind
Deborah comforted a boy at her birthday party who was upset. She next to him and quietly stroked him, visibly calming him Is that's not theory of mind, I dont know what is. She's not yet 7, I vividly remember developing my own TOM when I was 10 and it would have taken me years longer to do that. In awe.
Sunday, December 29, 2013
And another thing..
I've actually been really, really poorly! Only realised today when the anti biotics kicked in and removed the chest infection that was a knock off from the viral phlegm thing I had for a month. So the other nagging thing at my memory was that I was ill and not acknowledging it.
These are all short, boring posts, but am writing them so I MIGHT remember this the next time this combination of seasonal stress/enforced cheerfulnesses and illness hits again....
These are all short, boring posts, but am writing them so I MIGHT remember this the next time this combination of seasonal stress/enforced cheerfulnesses and illness hits again....
Saturday, December 28, 2013
Stress make me more autistic.
Who would have thought it? I had such a bad reaction to Christmas as I felt stressed. Stress reduces my coping skills, and makes me feel much more autistic, just like I did as a child. It's a bit of a bugger to suddenly find I have the skills of an 8 year old when I need to be 42. At least I know what it is now, and why it was so frightening and familiar to feel like I did. Not a regression, but gives me much more insight into why D descended this summer. The stress removed her capabilities, her awareness of such would have made her more stressed, etc. how to plan a way out? For now, probably just documenting it and awareness will help.
Wednesday, December 25, 2013
Done it again
Not sure what, but I have. I recognise this in my kids - both get over excited and then meltdown, and I think this is what I do too. It's really upsetting - today is Christmas and I spent half the day so worried as D has a nasty cough/cold and is so poorly. We went out for coffee and I was working super hard on keeping her calm and connected. I was feeling resentful for having to take D out, worried about taking the kids away from their toys, confused as it's also a good thing to do something my husband wants to so, anxious as I was going to be making lunch late, and Christmas lunch is so complicated (It's not) and worried the kids would argue through being hungry and ARGH. It went on and on. Whilst we were eating I calmed down and then a friend visited this afternoon with her son which was lovely.
Then it was all ok and I started to feel such grief that I'd wasted so much time worrying, and not enjoying the kid's Christmas. I've had 42 now and I remember the day's when my Christmases were in single figures and how special and magical they were. December has been so much hard work navigating tired child, Michael's HUGE anxieties, nativity plays, and just the social Christmas pressure It's been like an iron band tightening round my head and I haven't had time to notice as I've been so busy looking out for the kids, friends, etc. I feel numb as I wanted to enjoy Christmas so much by cherishing and adoring my children, but actually it ended being a huge stress despite everything I tried to avoid it. When we were at the coffee shop, I was so focussed on D, I was actively rude to people who were trying to talk me (I didn't have the attention to spare) and I felt/feel so bloody autistic. I then feel like I'm having a tantrum to get my own way, which is also true, which then goes around and around and around....
Talking to my friend apparently she was warned off me by her friend who said "I'd lost weight and was outspoken". Neither of these qualities are bad things, neither should invoke suspicion (loosing weight) or disdain (Being outspoken). I'm admired for my bravery in being completely honest and I'm open on purpose - to inspire parents/children living with ASD and to show I'm just who I am, and I'm no longer willing to hide. Except today I needed to hide and didn't, and worried and was out there and missed my children. I'm grieving for that.
Then it was all ok and I started to feel such grief that I'd wasted so much time worrying, and not enjoying the kid's Christmas. I've had 42 now and I remember the day's when my Christmases were in single figures and how special and magical they were. December has been so much hard work navigating tired child, Michael's HUGE anxieties, nativity plays, and just the social Christmas pressure It's been like an iron band tightening round my head and I haven't had time to notice as I've been so busy looking out for the kids, friends, etc. I feel numb as I wanted to enjoy Christmas so much by cherishing and adoring my children, but actually it ended being a huge stress despite everything I tried to avoid it. When we were at the coffee shop, I was so focussed on D, I was actively rude to people who were trying to talk me (I didn't have the attention to spare) and I felt/feel so bloody autistic. I then feel like I'm having a tantrum to get my own way, which is also true, which then goes around and around and around....
Talking to my friend apparently she was warned off me by her friend who said "I'd lost weight and was outspoken". Neither of these qualities are bad things, neither should invoke suspicion (loosing weight) or disdain (Being outspoken). I'm admired for my bravery in being completely honest and I'm open on purpose - to inspire parents/children living with ASD and to show I'm just who I am, and I'm no longer willing to hide. Except today I needed to hide and didn't, and worried and was out there and missed my children. I'm grieving for that.
Saturday, December 07, 2013
Perfectionism (again)
I'm now on the PTA (co-chair to be exact) of Michael's school. We've been arranging the Christmas Fair which we had today. Earlier on in the week I had organised for plates to be sent for cakes and had nearly included a request for bottles for the bottle tombola but was advised not to by the office staff. Cue horror when hardly any bottles made it into school Cue feelings of personal failure.... Talking to the PTA secretary who felt that perhaps next year we could try the request on plates thing.
That afternoon I'd been mulling on this (and bought bottles from the 99p shop) and realised my friend had not been criticising me. She was not implying it was my fault, and saw it as a joint effort. I asked her to clarify that she hadn't been upset with me, and she looked surprised but as she knows me, and knows I'm ASD, she did.
I did really WELL at designing the programme for the fair, making lists of things that needed done, going and make small and funny appeals for help, and following instructions. I was able to use all my skills and kept on getting really, really good feedback from people - all of which I ignored as they could't possibly be right.
It's so useful to see that the thing that is so typical of ASD - eye for detail, methodological working practice, quirky social skills etc, can turn into hopeless perfectionism that I then use to give myself a hard time with. Really useful and I'm grateful for the experience. This is the positive effect of diagnosis and why it's so good for me with my ASD brain. I have a list of traits in my head, I can match them up and now I can work on seeing them as things with positive and negative sides.
That afternoon I'd been mulling on this (and bought bottles from the 99p shop) and realised my friend had not been criticising me. She was not implying it was my fault, and saw it as a joint effort. I asked her to clarify that she hadn't been upset with me, and she looked surprised but as she knows me, and knows I'm ASD, she did.
I did really WELL at designing the programme for the fair, making lists of things that needed done, going and make small and funny appeals for help, and following instructions. I was able to use all my skills and kept on getting really, really good feedback from people - all of which I ignored as they could't possibly be right.
It's so useful to see that the thing that is so typical of ASD - eye for detail, methodological working practice, quirky social skills etc, can turn into hopeless perfectionism that I then use to give myself a hard time with. Really useful and I'm grateful for the experience. This is the positive effect of diagnosis and why it's so good for me with my ASD brain. I have a list of traits in my head, I can match them up and now I can work on seeing them as things with positive and negative sides.
Sunday, November 17, 2013
Autistic Parenting - It's not what you might think!
Today we went into town. We were going to catch a train to our favourite coffee shop as a treat. Deborah stated quite categorically that she did not want to go, but we thought we;d try anyway. This morning was a little chaotic at home so it was always worth going and seeing if getting away form the chaos might help. It didn't, she wouldn't go through the barriers and looked completely terrified. Ian and Michael were over the other side and the stress of the situation got to me, I could feel my tummy turning flips and exhaustion covering me as I tried to stay calm. The noise of the people, the bright lights, my expectations to "Get D to CONFORM, to GET ON THE TRAIN, to PUSH THROUGH HER FEAR", my feelings that I would be failing her as a mother if I did not get her on the train, yada yada yada.
Deborah by now was sitting on the floor entranced in the patterns of the stones inset in it. I joined her and realised she was finding squares, triangles, circles in amongst the random shapes (it's gravel set in a matrix or sorts and polished up, could even be granite I guess). I joined her, my ASD brain was soothed, she gave me a big hug. I asked if she wanted to go on the train or go round town with me. She still didn't want the train, so Ian and Michael went off on the train and we went round town. It was lovely. How clever of Deborah to able to self soothe in the middle of such a sensory overload and be able to stand her ground. Parent learning from the child.
PS 17/11/2013
As I was drifting off to sleep last night I realised I'd forgotten the most important bit! Our visual timetable was set up for bus, train, coffee shop etc. Plus we always do plenty of verbal preparation too. This meant that when I didn't get on the train with D, we had unscheduled time and had to wing it - another potentially huge issue. Having not forced the issue with the trains, D was calm enough in herself to be able to go with the flow. We ended up having a wonderful time in town together, and then an impromptu tea out followed by walking around town looking at the Christmas lights. So it worked out super well.
Deborah by now was sitting on the floor entranced in the patterns of the stones inset in it. I joined her and realised she was finding squares, triangles, circles in amongst the random shapes (it's gravel set in a matrix or sorts and polished up, could even be granite I guess). I joined her, my ASD brain was soothed, she gave me a big hug. I asked if she wanted to go on the train or go round town with me. She still didn't want the train, so Ian and Michael went off on the train and we went round town. It was lovely. How clever of Deborah to able to self soothe in the middle of such a sensory overload and be able to stand her ground. Parent learning from the child.
PS 17/11/2013
As I was drifting off to sleep last night I realised I'd forgotten the most important bit! Our visual timetable was set up for bus, train, coffee shop etc. Plus we always do plenty of verbal preparation too. This meant that when I didn't get on the train with D, we had unscheduled time and had to wing it - another potentially huge issue. Having not forced the issue with the trains, D was calm enough in herself to be able to go with the flow. We ended up having a wonderful time in town together, and then an impromptu tea out followed by walking around town looking at the Christmas lights. So it worked out super well.
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