Learning empathy

Two nights ago, Michael had a very small rectal prolapse and Ian rushed him to A and E.  In my ASD rigidity I couldn't understand the number Ian wanted me to call as it was not one I'd come across before, and I wanted to call the local out of hours service.  Ian was too stressed to explain it was the new out of hours number (or something) but I called it, and in Michael went.  Poor lad was so terrified he threw up several times as he was screaming so much.  

Deborah was laughing at the noise he was making, and we were trying to explain Michael was sad, whilst keeping him calm, and supporting him.  Michael refused to leave the house without kissing Deborah good bye, and that's when she finally go it.  She was devastated once he left.

Luckily Michael was fine and continues to be so, although understandably reluctant to use the loo.

My big learning curve was that although I had always understood that people were worried when their children were admitted for day surgery (as I'd read Michael might be), I never really "got" the level of anxiety, until I experienced it myself.  Now I have that understanding I feel much more empathy for those in that situation.

Autism - empathy there, but learnt!

I'm lucky as I'm a Buddhist and try to practice to live out the principles of compassion and wisdom, so I'm in a mental stream to enhance compassion.  So useful for me as an ASD  person, there have been times before I started on the compassion training (and since, lets be honest!)  when I've lacked compassion simply for what I don't understand.  My experience this week was in empathy, but the basis of compassion helps me to apply my own feelings to understand those of others.  I'm quite shocked I'm still so slow in this, but that's just how it is.  At least I have the opportunity to learn, although i hope to learn quicker without mine or anyone's kids being ill next time!

A life in Pictures

To paraphrase Temple Grandin.

Visual Emotions

Learning to express emotions is hard,
With a brain on wheels,
and pre learnt tracks.
That might not be leading where you need to go now,
but no brakes, no steers, no way of changing course.

Look out the window and signal for help.
Wave, scream, shout, pinch
Someone will hear and understand and help,
won't they?

A hungry ghost wearing a chain of fire,
All comfort burned by the act of seeking it.

Let me give you water,
Give you words,
Give you brakes.

Let me hold you, let me help you,
Let the road path our feet,
Let us talk.

Because Autistics can be creative...

Not that there was ever much doubt, but you know, it's a joke :)

Briefly I've been diagnosed, and it's fine.  Nothing more, nothing less.  Its given confidence in my and my daughter, I managed to get this far, and I can let go of her a lot more and try and help her journey.  But not today, sadly.  Hence the poem,

An afternoon walk to the shops.

On a road,
Holding hands
Sticky with ice cream and memories of food.

Our shadows slide behind us
over the gravel pocked ground
You hold my hand
and I hold yours.

Often you let go and I will run, chasing and screaming my terror
Focused on the chase, focussed on my lack of resources to engage you
to keep you safe, happy, amused and learning.

When you have an autistic child
You walk the path of the teacher, the therapist, advocate
Sometimes too, but not so often, the path of the parent.

Holding that small sticky, curiously warm hand
And you see life unfurling, still miraculous, still amazing
But yet, not right enough for ease or comfort.

And I hold that hand for dear life
I pray for my autistic brain to soften, to mellow, to allow grey round the edges
I berate myself saying
"The Last Thing my autistic child needs is an autistic parent"
I howl and scream, so loudly that no one will ever hear.  The walls that surround me, are the walls of my heart.

How can my heart be so full of love, and yet my brain so rigid?
My mind goes blank, aware as the sky
My eyes see beyond the moon

But one scream, one whine, one non verbal grunt when I know there are words
Hidden inside the maelstrom of the encompassing anxiety that I just cannot reach inside
And I am lost too, swirling on my own orbit of rigidity and frustration.

Where then, shall we meet?
Where shall we meet my daughter and I?
Where but in the road, holding hands
Sticky with ice cream, and walking forward.

Walking, walking, always walking
But together.

There is love and it is here, in the rising of the toe from the floor, and the kiss of the heel to the earth.
Love in walking, in sticky hands, in screaming "NO! Don't run! Don't eat that! Don't Jump!"
Please darling, jump to earth, with me, and lets walk.

So that's what a meltdown is!

Reposted from an ASD forum just to remind me what it's like to experience a meltdown.  The experience is completely normal to me, but I'm just starting to realise how un-normal these feelings are and how ASD they are.  Useful stuff! Apologies for weird formatting.

"Urgh too tired - everyone been ill and my lungs are full of gack (it's a technical term, honestly...) - ended up having a meltdown today at a kids soft play place. Horrible feeling. I was in the ball pit and suddenly couldn't tolerate all the balls being thrown around (too visually distracting I think), started to feel my chest tighten so made sure someone was looking out for M and escaped. Bought a magma warm coffee and got so stressed carrying it around as adults kept on nearly walking into me. Really trying not to spill it on the kids whilst their mothers are backing into me... A bit hungry and feeling quite disorientated by now, and unable to judge distance (this is hindsight). Tried to call M for lunch, but he's inside a huge climbing frame having the time of his life.....

Spill coffee on my hands a couple of times but ignore it, finally get him to come out, realise the coffee is burning my hands, some lady is talking to me about some

thing, cant remember what happened next but I ended up just dropping my coffee on the floor as I couldn't move from where I was (too many moving targets). Apologised (I think), lady told me to go hold my hand under cold water so I did. She then said I hadn't held it under long enough as my hand was still red, but I couldn't explain that's what my skin does. I tried, but I'm not sure if I was speaking. Got Michael to the place they were serving food. Saw a friend of mine who has ASD kids and burst into tears in her, and had a big hug which was great as I could just block everything out and know M was safe. Just horrible!

What was so scary was how out of touch with reality I was through most of the above - I've had them before but I didn't realise the extent to which I take them inside. D lets all out and I'm so glad! At least it gives me a chance to hold her, or try and find her space to let it all out. What was so weird was deja vu after all of the above - I spent so much of my childhood feeling so overwhelmed and frightened by all the sensory stimuli around me, I hadn't realised that those were my meltdown! Sorry to make it about my, but I'm trying to get a handle on it so I can understand and support D better."

And then I carry on, because why say in 1 word what you can say in 100?

"

 ps I really am sorry to witter on, but it's useful (to me) to reflect on the role sensory stuff plays in all this. I'd been using chewing gum to keep me steady through deep pressure but was feeling so tired I went for the coffee! If I'd kept going with the chewing gum I would have had my deep pressure crutch, but obviously got rid of that so couldn't cope. As I put the chewing gum away, a little voice did say to me that I was throwing away my support and I should watch out, but of course I only remembered that in retrospect! Just really helps me understand D so much more - I mean meltdowns look so violent and horrible, I technically know they are not on the inside, but to have the actual feeling of one and work with that to help D feels quite positive."

and finally....

"I was only writing about it as it felt so positive afterwards to understand what had happened. I've not been formally dx as ASD yet, although the Psych I spoke to informally seemed to think I was but I have been dx with Sensory Processing Issues. I think today was sensory processing induced meltdown but one of the things that really interested me afterwards was simply NOT being able to communicate. My daughter has a separate speech and language disorder and delay on top of being asd and spd and I've never got it quite as much as I did today. I have a friend whose child's meltdown's are on the inside, and I realised that' pretty much where I am. It was so interesting to realise that was the same reaction that my daughter is happening even she is much louder. Glad it was useful, as I said I spent most of my childhood in a place of not being able to communicate through being constantly overwhelmed, and I;d forgotten how completely "squashed" I would feel as a result. Its one thing reading the official language of how to deal with your child, but another being able to identify the same experience in yourself :)"

Notes.

Had a really funny thing happen this week, a couple of days ago. Actually it started Tuesday, when I had some more treatment from the dr for my health issues, which have been weighing more heavily than I had realised. Wednesday I was shouting at one or other of the kids about something and I realised that I was actually angry for a reason, I wasn't being a complete monster for shouting. Shouting is not a good way to deal with children, but I realised I had reason, and wasn't awful or failing as a mother, just reacting to circumstances. I constantly think I'm failing as a mum, so this was a huge realisation for me. I then realised that the answer to that argument was hidden somewhere in my reaction. So I could even stop feeling guilty about being angry! For me this is so big I simply cannot say it enough times, I feel so guilty constantly. I also realised that I would find the answer to the thing just by using the energy of th arising stuff. So if it was angry, I just spoke clearer, if. I was tired and a child was wanting more than I could physically do, I could just sort of relax into it. I'm still shouting too much, but it's coming from a calmer place. I phoned Ian as D had been screaming for half an hour and nothing I could do could get through until I used the anger energy. Ian noticed how calm I sounded which was great! This is also part of it, autistic children learn by observation, so the last thing you're supposed to do as a mum is shout. But the thing is, I have so many asd traits myself and am so similar to D that Im pretty certain I would have been diagnosed as autistic had that been around that much 40 years ago. So I'm already on a wrong foot, I also have her sensory issues, meaning loud noises really put me straight into fight or flight. So when she is screaming I'm battling my fight or flight, yet being desperately upset as a mum excuse my child is screaming. Add to that the complete failure in being unable to remain calm, no experts advice to follow because I've just failed it, and I still have a desperately unhappy child to support, whilst probably being in great. Physical and emotional pain... I think the most of this, is that being a parent is just about being oneself and just all the stuff that comes up. The problem is, I find this hard - like all parents. These days paretong is so focused on sleep routines, when to feed solids, polite behaviour etc, whereas, my worries were all about who I was when I was with the kids. I always felt that was more important, but never knew how to do it. Parenting is pretty well defined as I do things that are odd, but seem to suit my kids, the battle has seemed external as well as internal.

My typos are terrible!

My iPad does weird things in this format, I'm thinking about changing browsers. Maids love it though so that's cool.

D has started her new school. It's a special school and I struggle with that, but then I also struggle with the fact that the ed psych has said she is too high functioning, too normal to attend. He's right, she is, but she was highly anxious in her previous setting. Such a shame our schools do not cater for happiness? What else is there?

Last thing to end on a happy note. We had an Easter Assembly at school recently. D LOVES her school, loves her teacher, runs onto the bus with a big grin in the am and is generally calmer and happier at home. It's completely brilliant. Easter Assembly happened, I'd made an Easter bonnet with D just before. She was the only one out of her class and the first child in the whole school to stand, smiling broadly, and parade her hat. Just amazing. The older pupils did amazing presentations, but of course it's my girl in her hat I remember.

World Autism Awarerness Day

So ill ATM, all wobbly and dizzy and trying to stay upright and not vomit, or shake, ache etc. blood test results on Thursday. Somehow it's quite brilliant, somehow there is more happy involved. Today was brilliant. It's not always going to be so, but just had a get day mooching around wit the kids.m did scream and swear this am, when they'd thrown sand all over them selves and I was worried about sand and eyes and ears - wouldn't be the first time. But then I released I hadn't had time to check in with myself, so I sat down at 11, had my first drink of the day and realised I actually felt rubbish and scared. So I had a good reason to be angry, and knowing that disapiatated it.

So the thing I've realised on WAAday is that somehow I can actually cope. The fear and uncertainty of the last year, the worry about schools, the hatred and judgement of our schools, it's being got through. There will be more stuff too, I accept that.

Also realising how much fear of other peoples reactions has so far spoilt my aims for career and study is really helpful. It's such a tangible fear, if not I could cut it up and cook it, there would be no more world hunger. Such a shame. Seeing the sadm fear in D and realising its a fear of unpredictability of learning not being completed unless its rote and perfect, and seeing the same fear and knowing its all brain level stuff. Born with brain level stuff, not learned. I've tried so hard to shield her from being like me, taking her out constantly as a child, socialising her, doing everything the various specialists said and she's still use who she is. M on the other hand, who I did none of those things for, is so sociable I don't nderstand it. I don't get how he can just walk up to another child and start playing, how does he know the rules? I never did and that's when I start to get it, get that subtle but huge difference in brains.

The last 2 books I've read and a local monk have all told me to take regular breaks through out the day for really short periods to take a deep breath, feel the spaciousness and then get stuck in again. I wasn't able to follow the first two, but thankfully the mo pointed out its about being willing to try and not succeeding.

What a thing it is to find complete acceptance of ones failings that one can't accept oneself.

I'm really pleased that D loves her new school, loves all the new experiences, and is getting used slowly and gradually to the school bus. I'm so impressed she is able to all of this, this is the emotional equivalent of a hike to the Himalayas to be undertaken dressed as a chicken, she is doing amazingly.

What I am exceedingly, exceedingly cross about is that the school bus is full of obviously disabled children, much more severely asd kids etc. D will eventually move into main stream where hopefully she will have learnt enough social skills to cope. These poor kids will stay in their special school, to go into supported living and society will never bloody see them. No one will realise that the disabled are part of our society if they are never seen.

It makes sense to have a brilliant school like the one D is gong too, with a centralised pool of resources as money is tight and the kids go, need these resources to learn. But it makes me so cross that because of this, we don't see these disabled children in the streets, we don't see them in the shops, we don't see them anyway. Access is so restricted for a variety of reasons- steps not ramps, no accessible toilets, too much/ little sensory stuff, the list is endless. No one person could solve it all, but in the mean time, we have a sanitised image of a disability free society. Disabled children are looked on as freaks, morons, saints or geniuses, their mothers the same.

Neuro typical adults who should know better categorise and damn. Our schools should be and can be brilliant. To hear Deborah talking about her class mates is a truly profound and moving experience. But if it were recognised that children were humans and benefitted from loving adult contact, were not all identikit robots, and had needs, wow our schools would be amazing. How much do we loose by hiding our disabled people away?

So cross, very Pre menstrual, can you tell?

Inspired by a friends sculptures.

Tie a thread around a loved one's waist,

Or weave it around their heart,

Let it follow wherever they go,

Let go of the ends you hold.

The threads will disappear

The ties remain still.

Do this for a friend who dies,

Let them go.

Welcome the memory of their love

The tie to their soul stays with you

Until you too let go.

Let love love stay with the world,

Tie us all together

Threads that bind, fast unwind,

Our apartness binding us closer.

Soft as breath

These bonds are forged

Never forget

But just let go.

Intense Day

Up and down, up and down.

Went to see a brilliant friend yesterday and felt human and me again. Had tea out afterwards to celebrate Ian's new job - poor D ate so quick she filled 3 bowls with puked up mango lassi, dosa and EVERYTHING. Or so it seemed. Full marks to the waiter who came over afterwards, seeing the puke filled bowls, and asked if I wanted it boxed up - erm no. As Ian was back from the loo by then having cleaned D up, I was able to take the bowls away and empty and clean them myself. Poor Deborah it had taken us an hour of mind-crunchingly slow traffic to get there, most of which she had filled by screaming at the top of her voice in the car. I shivered and shook with the effort of not responding until I snapped and screamed back, and then sat in gloom and guilt and self disgust. Michael loved seeing our friend's daughter, loudly announcing in the back of the car that he had had fun. I was glad but also sad as Michael has to put up with so much screaming, so much special needs, so much sometimes. it's ok and will stand him in good stead, just we need to balance, balance balance so much.

Today Ian put the bookshelves in our shrine room. He put Dad's old siddur's (prayer books) up on the highest level. Looking through them I saw the names of the auntie's and uncle who had given him them for his bar mitzvah. I even found his bar mitzvah certificate. I even, even found a book inscribed to his mum from her father. I think my great grandfather was the son of immigrants. I've also written our Christmas cards this week (yup Buddhism, Judaism and Christianity in one paragraph) , one for my aunt Judith, Dad's sister. She's going senile, my mum last spoke to her a year ago, when her speech was confused and she couldn't answer questions reliably. Of course being that she is from my Dad's side of the family where the ASD genes run rife, no one is allowed to have/display any emotion, so any enquiries I've made about her have been ignored or answered piecemeal. So sad to say goodbye to someone before she is dead, and also very hard too. I will email my cousin again to say Happy Christmas (her children are aetheists but this one celebrates Christmas for her children's sake) and also to find out how her mum is. I understand that it's hard to talk about this stuff, so maybe I am expecting too much. especially if you're not in the habit of it and if not talking about it is your coping strategy.

Went out today - much more successful. Big slides and fresh air work wonders. Saw a dog ran over and killed on the way home. Nothing anyone could do, it had run out of a field by the side of a quiet road. Ian slowed right down as he saw it, the lady on the other side of the road didn't see the dog . It was a cocker or springer spaniel and it was zig-zagging across the road, straight into the puddle the car as driving through at the same time. It got caught up in the wheel mechanism and was circled violently before being thrown off. The driver got out immediately too distraught to speak, Ian rushed up and gave her a hug (she was ok with this). I came out of the car too, some neighbours were out - all stood with our hands on our mouths, too shocked. The neighbours didn't know whose dog it was Ian was talking to them. I gave the driver a hug and then held her hand as the dog's owner came running out of the field. The neighbours told her, the driver didn't want to to talk to her, but pushed herself forwards. It was all tearful, the driver was shaking, I was shivering and the owner was a real, stoic country woman. She was not going to show any emotion - the driver said she was amazing for not showing any, and the stoic answered that was going to go home to shake and cry - brusque but kind not nasty. The owner and river hugger, the dog's body got put in a bag for the vet to dispose of, the owner said she never have let him off the lead. I hope she's not going to go home and feel like a silly old lady for having done so - I once worked with a similar, wonderful stoic who once the drama was over, quietly got on with blaming herself. We got in the car and drove off, pleased everyone was being so terribly English but in a good way about it. Still shaken and sad for the dog though and for the old lady without her dog at Christmas. The driver luckily had someplace to go - she was visiting her father, as she was taking him some dinner as he lives on his own. I hope she was able to relax there and get over the first stages of her shock, she had a dog herself. She could remember hearing the dog go round the wheel arch and I suspect she will for a long time.

Then a horrendous bed time with D and talking to my mum on the phone and remembring such a strong feeling I had growing up. Quite simple really - not enough emotions for my mum's side of the family, but far too many for my dad's side. So confusing and still makes me want to scream, lots. My cousin on my mum's side has brought the kids Christmas presents, its bizarre, she's made no attempt to contact me since before Deborah was born - she phoned to tell me her son was born. She has no money but still wants to buy us Christmas presents as her mum did when she was alive. I wrote to her a couple of years back, to say do you want too, I'm concerned that you're spending money that you don't have and it's not as if we ever really see each other anyway? She never responded, so it's a weird sort of kindness. I mean presents are kind aren't they, but I don't get why she's bought them?She didn't last year and this year she turned up on my mum's doorstep with a bag full for all of us. It's fine if she want's too, but I really don't understand it. Archie (her son who is a month older than Deborah) turned up with a present that he really wanted to give to Michael. I'm sure Michael will love it, but I last saw her 6 years ago, when my father died. I think I've met her daughter once - she looked lovely, just old enough to pull herself up on things, and at the stage where my cousin was worrying about what foods to introduce next. I've talked about this with Ian and he looked slightly askance so maybe it's not jsut em, but who knows. She has a new boyfriend so maybe she's trying to pretend our family is more functional than it really is.

Part of the weirdness is that because of Dad's lack of emotions, Mum's family all thought he was really cruel and never really understood quite how mentally ill she really is. They certainly never understood that at one point he pleaded with the hospitalfor mum to come home, purely so he could keep me at home and not re-homed as he felt I would have been, men not being fit parents 40 years ago. Particularly, Jewish Aetheist, non diagnosed Aspie ones. So for years I've had to defend Dad to them, and for years I've had to commiserate about my mum to my dad's family. My dad's family are actually sympathetic as long as I have no emotion.

So I'm totally, totally confused, and would really rather no presents from any of them. I could particularly do without Mum announcing "I only gave Alex as much as I gave you" whenever she gives her money. I'm not jealous, it's my mum's money and she's free to do with it what she likes. I'm not sure why she's reassuring me, it's never made me feel anything other than it's mum's money to do what she want's with. I guess I do feel uncomfortable that mum feels she has to justify herself like that, but I think that's her business. I think it's a shame it's so difficult for people around mum to really sort out the truth from the not so true, but I guess that's because Mum has difficulties herself.

Christmas hey? Brings out the best and worst of us. Oh and first day of Hannukah today too.

Anaemic.

Well tablets definitely having an affect as that which had been very light is now rather heavy. Oh good. Thankfully have realised today that the low mood, headaches, fatigue and irritability are related and that maybe it's not a good idea to take my calcium supplement at the same time as my iron one. So many little things to juggle at the same time.

Had a bit of a rubbish morning, went to our local children's centre and as usual was too busy supporting D that I didn't have time to talk to anyone else. Due to the lack of iron I had a huge headache and was feeling really dizzy and irritable anyway, plus M kept me up last night from 12 - 4 and 5 -6 so was quite tired. I don't often get the chance to talk to parent's at these sessions, but I feel they all know me as the mum with the disabled child... Very lonely feeling and very sad as I feel it is impacting on M as the focus is always on D.

M in super whingey mood for a specific snack, so I lost my eye on the ball, hence D getting hungry and having a huge, huge HUGE strop over a tricycle. Of course it had to be at story/singing time when it was nice and quiet. Trying to sort D out I then return to find M scooting around the room on a beanbag, fun but bumping into people potential so felt embarrassed. D is still kicking off so lots of people are staring at me and I felt totally conflicted as to stop M or at least take D some place she won't disturb story time. Thankfully D really wanted to do what I wanted her to do (which had caused the strop) and leaving her to it was the best thing. As it was so public it was all I could do not to cry.

You can guess what happened next - one of the workers asked me how I was and there were tears. As I said to her, when you get given a diagnosis, you become your child's therapist, advocate, social worker, carer, the whole lot. The mothering role get's lost. Of course it's still there, and D wouldn't be doing so well in general if I wasn't mothering but even so. Plus I have to keep M in social situations too. The problem is, people only ever want to know what's happening with D's school status, and I do tell them, and they say, "Oh you're doing magnificently Rachel, you do so well!" This is of course a wonderful thing to say, and appreciated, but quite honestly I'd rather move on from being a mother of a disabled kid who is after all a child like any other. This is going to sound ungrateful, but I also hardly ever get a drink when I go to this group as I'm simply too focussed - I kind of wish the appreciation would include the physical too. But then I'm expecting mind reading, which is unfair.

The kids absolutely love this group, and talk about it for much of the week, so I feel we do have to go regularly. Plus it's good for D to be put in supported but stressful situations and good for M to see the other kids. I'm worried he doesn't play with them much though.

Sick to the stomach with all the bloody school stuff.

Drinking very dark cocoa in an attempt to assimilate iron and cheer up. Writing this has been very therapeutic though, as today was a doddle in comparison to many, many days we have had. I don't mind how things are at all, just maybe I need to acknowledge them a little more.

Bittersweet

Went to see the gynaecologist today. Quite an interesting experience, the scan showed all fine on the inside apart from chunky ovaries. Nothing happening to them, just they look quite big.

The gynaecologist listened to my 22 year history of hormone horribbleness, agree with me that I may not have had ME in my 30's, just that it was too much trying to have work and deal with my hormones. No reason for why my hormones are so bad, just either that I'm very sensitive to the ones I produce or that I produce masses. I queried conceiving so easily and he suggested that's because I'm lucky. I will agree with that. I agree with the rest too as well. I always tell people I'm too hormonal and maybe I'm actually spot on. It's only been since my periods have come back after Michael and after the coil them getting so much worse on a monthly basis, means I can observe the hormone effects. As these are basically from just before ovulation (day 12) and last until the last day of my period (day 10), I do literally only get 2 days off a month.

He's suggested I take the mini-pill and also that I can take 2 a day if the symptoms come back stronger after a few months as generally happens. He's put me on system so I will be phoned by the clinic in 6 months time to see how I'm getting on.

Happy with the treatment, but can't express how it feels that I could have had a career and been good at what I love. I've never really grieved for the ME years, I've always just got on with it, believing that's the best thing to do. There's never really been anything to grieve, and I guess in very many real ways there still isn't. After all there is no disputing that I took about 5 years out to get better and I did which was great. I've had children too which was never part of my plan, but of course life is much better with them. Got married too, never thought I'd find someone to accept me. Struck gold there.

In my late 20's/early 30's when I started to feel so bloody tired ALL the time I didn't realise the link between my hormones and the way I felt. That link has only become clear later on. It's always been confusing as other women always agree how awful PMS is and they say, but it's only for a couple of days isn't it? It's taken me years and years to realise they probably weren't in the main talking about 2 to 3 weeks of labour like cramps (had these in my 30's pre children too), and mood swings/fatigue a go go for the entire time too. Most women do a get a substantial break each month, it's me that's unusual here. So I can stop beating myself up for feeling so pathetic for not being able to cope with something other women seem to sail through.

So that's me. Quite sad about the loss of career thing, but who know's there's maybe still time to do something once the kids are in school. Really hoping the new treatment will work alongside the coil, after all I've not tried that option before. If not, at least now I'm in the system for the gynaecologist so I will be able to access that quicker. Finger's crossed.

All I need to do now, is work on my sensory issues and on getting D sorted. M is doing just fine, but the more I can get us out the house, the more he will see people which will be good. I may even have enough energy to start contacting my friends again, this has all gone for the last 6 months or so of hormone horribleness. But let's not be rash here ...

Currently indulging in chocolate and tv, but soon am going to turn off the telly and get the kids to the chemist. Life carrying on, one step at a time.

When we lost you,

you were there in perfect sight,

I was probably dressing you, or changing your nappy,

Making your tea, or brushing your hair,

Yet you were lost.

The hardest thing was that we didn't know,

didn't know that you were lost.

Because you were there in front of us

we allowed ourselves to be convinced that you were a difficult child

"They're all like that, with their funny little ways".

We thought all you had to do was change,

grow a thicker skin, learn to adapt.

We didn't know you couldn't,

didn't know that changing you meant losing you.

So we lost you.

Suddenly we realised

we knew we hard to find you.

We took off your uniform, but you were not there

We looked in your eyes, but you were not there,

We held you tight, but you were not there.

So we let you go,

let you go where you needed too,

put up with the scratches and the blood and the screaming,

We held you tight, looked in your eyes, hugged and kissed you lots,

and you were there,

you'd never gone.

Thrown and caught by the dancing wind

The leaf shadows flicker and splash on my garden fence,

A painting of a feeling, caught in one second

And blown away the next.

Month by month

Month by month and day by day,

Another label for your needs,

Another barrier for you to climb,

Another perspective.

So many labels in such a short time,

so many diagnostic criteria

but you still manage to laugh, be happy and love,

and loved, loved, LOVED very much too.

Defined but not cut-off

Part of this life, this great big world,

Part of the great going-on beyond

And here, right here, and loved.

Holding the Universe

Holding the Universe

When you feed yourself to sleep

and I hold you close to me

I'm holding the universe in my arms

A whole wide world unknown to me

Drifting off to sleep.

Pregnant Pause

Pregnant Pause

Twisting in the twilight of the womb

You came to be part of the world

Part of the world just as you are

with your hopes, dreams desires.

Part of the world, just as you are

with a brain that hinders your speech

hinders your smile, hinders your eyes.

A brain that demands perfection,

A brain that see's fear,

A brain that see's this beautiful world

In your own beautiful, unique way.

Twisting in the twilight world

I wish I'd done a better job

Given you a brain that craved love more

Craved eyes, and feelings

Craved touch and sounds and smells.

But this is to unwish you

and that just cannot be done

For you are yourself

with your frightened brain

your anxious eyes

and your ears that hear so much.

Twisting in the twilight world

You came as you are

My greatest teacher

and your own self.

Twisting in the twilight world

You became you.

Let the world outside welcome you.

Together

Together we learn to fight and rage,

scream and shout and bite and worse

and when I wonder about those words

well let's just say I heard it first.

When I wonder about those looks

wonder what is in your books

Wonder where you learned to fight

Wonder where you learnt to bite

and scratch and scream and hate so much

The mirror talks to me.

The reflection in your eyes reminds me.

Then we tickle and laugh and life is good

And now all feels as it should

A breath and I am grateful.

Grateful to you for teaching more about love than I ever thought there was to learn.

Such a day.

Such a day of weeping and wailing,

howling and hailing

emotional thunderstorms too big for our bodies.

The ranting and railing reaches the heavens,

the lightning of words screams round and about

whipping our heads with confusion,

scratching our minds with its talons.

But.

A perfect blue hexagon

No clouds in the sky.

All curled together, loving and laughing.

Perfection as we look to the sky

The day takes a breath, we pause and we laugh

We should jump, we should scream, we should all bounce high

- we are on the trampoline after all

The perfect blue hexagon as we look up,

Aeroplanes the only white in the deep blue sky,

Peace in an unexpected place.

Such a day.