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.

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.

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.

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.

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.

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?

These times are special, they inspire awe.
When death is close do we not breathe clearer an with more joy?
Does not every second become more precious?
When life is stripped away, love is revealed.

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?

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.

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....

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.

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.

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.

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.

Depression is a common co-morbid of ASD

Saw a psychiatrist today about my child's mental health. She is 6. This means somewhere along the line her life has become so disordered that cracks appeared in the wall of her mental stability.  In an attempt to hold it all together she shut down everything that was none essential - this including eating, talking, expressing her needs, toileting, getting dressed, leaving the house, loving and playing. The only thing that was left was an empty shell of child desperately trying to salvage herself by clinging onto these fragments.  The fragments held together were too small, too minute to keep out the emptiness which engulfed her and those around her. She is 6. She screamed and attacked us in an attempt to connect. Our burnt-out hearts felt stronger discipline was needed - we too started to cling to the cracks to hold the show together.  In the joint shadow of our emptiness we pushed her away, where she was further engulfed by the shadows. She is 6. Somewhere we have failed her. She is 6.


This is the thing - we have not failed her. She is 6 but she is overwhelmed and uncertain and depressed. These things have their own rhythm, depression grabs and claws to maintain it's hold and robs us in front of us.  We cannot help but fail her but at the same time we are supporting her as best we know.  Depression is a dark land, full of mirages to entice travellers to it's shores.  She is 6. She doesn't have a guide back. Neither do we. Together we must find one.


Mental health issues affect all, not just the person at the heart of it. Joins hands to lead from this dark place. Form families and communities to protect and cherish those most at risk. Love.  She is 6, may her life be loved, cherished and blessed.


"May all beings have happiness and the causes of happiness,

May all beings be free from suffering and causes of suffering

May all beings have the happiness that is beyond suffering

May all beings be free from anger,.attachment, and aversion"

Buddhist Prayer, The Four Immeasurable's.

Conversations about autism

I realise where I went wrong with my post about being misunderstood at my daughters pre school.  I can't quantify how much was their stuff, but I'm starting to decipher how much was mine.  I will break it down into stages....

1.  It is really, really, really hard to say to yourself, "There is something wrong with my child."

2. Times this by a million to say to a close friend and then again, and again, and again until you get to the bit where you're saying to a complete stranger, an unquantifiable unknown and quite possibly a hostile audience - your child's teacher.  How do you communicate the most vulnerable part of yourself in that most public of settings?  Of course if you do have a disabled child, you have to commit this act of self exposure, many, many times - to every psychiatrist, paediatrician, doctor, nurse, teacher, social worker, DLA worker, ANYONE who is involved in this situation. Imagine that - every time you set out the front door and your child's behaviour threatens to rip the sky from the earth (or so certain onlookers would have you believe) and then some.

3.  So how DO you say this most intrepid of questions, and more importantly, can you be sure you will be heard?

4. How does the teacher/social worker/health visitor/family friend/paediatrician broach the subject with you?  Will they be calm, reassuring, direct? Or will they fudge around, nervous, bound by professional regards?

5. Will you be able to understand what they are saying? What is being asked of you? Can you fill in the gaps between implications? Will you recognise the traits as difficulties if you yourself share them?  Will be able to cope with the bluntness or will you breakdown and surrender to tears to drown it all out?

Now I get it.

Communication

Someone recently on the interwebs made the point that ASD communication is often seen as aggressive by non ASD people as ASD people lack eye contact and over explain.

Brilliant!

What is great about this it that explains to me why, when I'm labouring to make a point,the other person is clearly restless.  Although I get that they are disengaged in some way,. it doesn't occur to me its my delivery, not the content that's the problem.  My husband has a wonderful way of staying quiet, waiting until there is a gap in the conversation and talking. Plus he's listened too - I guess he's much more to the point, enunciates clearly and has a deeper voice which helps.

It also explains why people think I'm angry, when I'm not, I'm just making the point.  One of the things we ASD folks struggle with is how to think of different ways to say the same thing. This is a useful technique in a conversation  if one feels one is not understood.  So I'm busy trying to rephrase, whereas in actual fact I need to be stopping and listening.

This also applies to anything I write.

Also - might also explain why ASD can be quite good academics, as well as seeing things so structurally, we also struggle to re phrase.  Our very pedantry probably leads us to exploring detail with a tooth comb, and our struggles to express lead us to more opinions as we try (struggling right now - but I'm not an academic!).

Selective Mustism

After a WONDERFUL day when D voluntarily got out of the house and sat on the bus into town, and was INCREDIBLY brave about all sorts of things, and M was brilliant at coping with a huge disappointment relating to her getting suddenly frozen in fear, I've been reading about selective mutism.  Had a conversation with husband recently and it turned out that he knew nothing at all about selective mutism whereas I did and assumed he must also... Sally-Anne conundrum to test Theory of Mind in ASD anyone?!

Anyway, reading up on selective mutism and I realise that it's sometimes triggered by a trauma, sometimes by an domineering mother (ouch!) and absent father (not true), etc, etc.  It's also often accompanied (in about 97% of cases) with Social Anxiety Syndrome.  D's mutism is not caused by her ASD, she talked despite having a separate communication and language delay and disorder.

Her speech comes and goes when she is ill, but she currently has no physical illness.  She has however started to show greater social awareness like nodding and smiling, or grimacing and shaking her head.  Recently she burst a balloon of Michael's and when she heard him crying, gave him hers and was then quite upset when he refused it. There's been a few other bits like anticipating the feelings of book characters etc.

I'm wondering how much of her social anxiety is based on her interactions with M - he is a communicator par extroidinnaire (except he NEVER stops).  She was at the beginning of her social awareness phase when M had a rectal prolapse and Ian had to rush him off to hospital.  Michael stood at the door refusing to leave the house until he had hugged D, and D was giggling (probably because she though M's wails sounded funny). I said something along the lines of "Don't laugh, Michael is sad, give him a cuddle and make him feel better". She did so and I put her to bed - I remember her face falling as she watched Michael go out the door and realised he really was going.  I wonder if she feels responsible for sending him away with an inappropriate response?

This may sound fantastical, but do remember that I always apologise as I find it a comfort to put sorry on the end of any sentence whose reception I'm uncertain of. I do this because my mum had terrible post natal depression, and I always felt responsible for this.  I felt that if I hadn't have been born, then my mum would never have suffered.  So on some level my ASD brain (remember the problem with social empathy) doesn't get that other people are responsible for their lives and happiness - I get it academically but not intuitively.

So would it be surprising for my child to be doing the same thing?  During our recent holiday all of her aggression and outbursts have been focused on Michael, but you know, guilt does that!  She may well feel guilty for sending him away at some level, and angry also!  After he was back from hospital, he poo'd all over the place, until we came up with the idea (from friends) of giving  him a cheap toy every time he poo'd on the loo. Guess which child wasn't suddenly being showered with toys?

M went away again recently, and D started to improve having just some time with us.  M was only on a sleep over, but I made sure during the day to highlight to D what was happening so she understood.  M loved it and came home wreathed in smiles and things seemed easier between them.

D is still scratching, hitting and pinching us all, but it is still mainly focused on M.  She seems calmer now she also gets a toy when she poo's, and even used the loo today, which she hasn't for about 2 months.

The only other time I've seen that look of extreme sadness on her face, was one time she was playing with a friend who didn't talk very much.  Suddenly this friend was joined by an older one who talked loads - D's face dropped as she realised she couldn't join in.  This was before she was dx, but was heartbreaking.

From what I've read selective mutism is involuntary, just like my sorry is.  Those that can talk about it, apparently feel like their throats were closing up when they tried to talk. I don't have those levels of anxiety but I HATE it when people tell me off for saying sorry. It's like a verbal stim, it feels WRONG if I don't and does worry me if I cant tell if I've upset someone or not (quite common!). So I can sort of get D's speaking stuff, and it must be SO HUGE for her. Oh my goodness, you know, a 6 year old having feelings this big and having to face them in a closing in world - and that's MY daughter. Not my fault, but MY daughter.

Waiting for CAMHS appointment to come through, hence making notes like this at stupid late o'clock at night.  I wouldn't sleep until I did anyway.  Waiting for assessment for respite care, waiting for return to school and return to Speech and Language Therapy. Wheels in Motion.

I love this world and it's beautiful except my child is so seriously depressed she wont eat, sleep, potty, dress, play or go outside independently. I love the world yet the last week I've hardly seen outside my front door.  I love the world and I'm so proud of my son for coping, and I'm hoping he wont be screwed up by this in the future. I could fucking scream, except my belly is frozen with fear.

Another letter to teacher's of ASD kids.

 Dear teacher,

This is specifically for those of you with the overbearing parents, who refuse to believe their child is autistic, who just mollycoddle their little darlings and expect you to do the same.  My big secret - I was one too! Let me share why with you...

By the end of my daughter's first week at pre school her teacher asked me to ok a referral to speech and language therapy.  I didn't ok this as I'd already sought out our own referral, which as I said to you was hopefully coming in soon.  You very kindly let me know my daughter should be potty trained, especially as you did not have the staff members to change her nappies for her.  You also kindly invited me to a special session on potty training where I brought up with another mum, where you listened in, my worries about my child's autistic behaviours.  You then said I shouldn't be worrying so much about my child not being potty trained which I wasn't.  I was there because you invited me, but maybe there were crossed wires somewhere.

The next snapshot is when I discussed my fears about my daughter being autistic with the nursery nurse over the water play on the open stay and play day.  She told me about her two sons, also on the spectrum, and agreed that I was probably right.

Do you remember the cakes I made for you at Christmas to say thank you?

Do you remember me bringing PECS into school to try and combat my daughters school refusal - you said you would use them as I asked you too, but then you changed it to only include the activities that were new. This was such a shame as at home we'd been advised to use them as a timetable by the local branch of the National Autistic Society, and it confused my child to use them differently.  We stopped using them not long after.

It was also a shame that the discussions about making it clear to my child when staff changes were happening (as advised by the NAS, whose print out I took in to show you) were (as you said) simply impossible.  I mean keeping track of 3 full time member's of staff and 2 part time must be difficult, I see that.

I do wonder if you ever had answers to the questions in the home/school book I started? It's SUCH a shame you lost it.  I completely understand you couldn't read out the social story to my child to help with home time - again not enough staff. Although apparently too many to note their comings and goings.  How do you live with the dichotomy?

I get you were surprised when my child didn't return for the final term but what with you not being able to change her nappies, read her social story  and the three hour meltdowns she'd have she when came home (often wearing the same soiled nappy that you couldn't spot) - well I simply didn't have the energy.

I admit my email expressing my concerns about your ability to safeguard my child during school years was quite strong and angry - I'm sorry about that.  I should have kept my temper.  I didn't expect you to reply saying you were withdrawing my child name from your school rote (the pre school was a feeder to the school) - I think that counts as discrimination?  But discrimination is such a nasty word isn't it?

Is that why it's easier for you say "Oh Mrs X got ever so angry, but then she never accepted her child was autistic."

I repeat - is discrimination such a nasty word it's easier to blame the parent for not understanding?  Which is sad, really sad. How much MORE would you need to convince you I was trying to work with you. Why - because you had my daughter and she is more precious to me, than I am, and I get that tolerance and understanding, breeds tolerance and understanding. I'm a Buddhist also, and every night I would mediate, trying to shine love on the situation so I could deal with it calmly, I failed and I'm sorry.  But I'm also human.

 It is hard when you suspect your child is different, it is hard when you are trying to open dialogues before your child is diagnosed, and you want your child's needs listened too.  That makes parents sad and angry.  It's also a dialogue you will have had many times with many other parent's who also appear "not" to understand - so please make the dialogue easier for us by listening. Often we do know our child is autistic before diagnosis day, it's just difficult to start that dialogue with you.  Especially if you're not listening.  Please listen.

I knew my child was autistic, I tried and failed to share that with her pre school and 2 years on I am blamed for not accepting she is autistic.  I wish I knew how to build a better dialogue so other parents and teachers don't have to have the same pointless battle whilst the child looses out on an education and suffers instead.  Four weeks after I took my child out of her pre school she turned round and said to me "I so happy".  I'd forgotten when she'd last said that, it been so long.

This is based on what happened to my family and the real sadness is that it happens all over.  Please share if you wish, so people in this situation on both sides (parents and teachers) can find a better way of building that pre diagnosis dialogue.  Our kids are worth it.