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.

Sky dancing

Hot stones burn my feet,
The sun kisses my skin with ferocity.

My daughter screams
Her skin is marked red where her fingernails scratch long grooves of hating the heat
Her hair is a fuss of hating the heat
Everything disordered by the kiss of the sun.

My daughter she dances
Through the air thickened with summer
But her dance is violence and anger
She dances

Her music is her voice
She screams her discomfort
Her terrible dance
to subjugate the world.

But the world does not listen
It simply carries on
So my daughter, dances.



Sky dancer is another name for Dakini.  Dakini's are powerful beings in Tibetan belief, fierce and powerful they are often shown dancing on the dead to remind us of the importance of non attachment to the self.  This is much harder for a child, when the self, the emotions, the reactions are just all wrong.  Holding my daughter this morning, before she'd had a chance to wake up properly and be affected by the current heatwave, I realised how desperately she is trying to communicate, and how constant and consistent she is.  Sadly for us, her communication is challenging, based largely on screaming and pinching.  The Dakini dance in the sky to remind us that whilst appearance can be unpleasant, the reality of acceptance and letting go is love.  From my daughter I must learn to love.

Beyond Aspergers...

Almost completely blocked.  Wanting to have an essay finished by next Tuesday, my brain is so scattered. Just cross that I can't focus, cross with the heat and all the screaming, and the mute, cross, cross.  Cross it's going to the 6 week holiday soon, 6 weeks of negotiating between the kids, each year this gets harder and harder as the gap between my two children get more increased.  Cross I don't know the full extent of my child's difficulties and no one can tell me, cross because this is legitimate, cross because I'm PMS (very cross).  Just bloody cross ok?

Cross because I don't know how to fully help my other child, cross because my reaction to other's emotions is take them personally, feel destroyed by them, and then work out how to fix them, by myself.  Really CROSS about this one.  Not half as cross as I am about being PMS though.  I really, really AM CROSS about that.

Cross with the fact my body is getting fat again, bloated and painful.  Cross because for me I can only really entertain one project outside of the children's needs - so this is either health OR my essay.  Cross because I'm ASD and yet I lack the focus to follow my special interest.  Cross because I shouldn't be so cross. CROSS.  Bloody cross, I wish it would fuck off.

My "Journey" to Diagnosis

Not really that much of a journey, mainly because I undertook if for my daughter rather than me.  As Deborah is autistic, I needed a way to get into her world, and I noticed that every time I talked about her to a professional, I ended up talking about ME, which was really embarrassing.

Having got a dx (quite unexpectedly and by chance) from an occupational therapist for sensory processing disorder and as a result taken medication which helped, I started to think about the idea more that I could be ASD.  I've talked about some of the brief flashes along the way.

The first time I asked a dr, they completely poo-poohed it, so it took me some time to come back to it.  I went and asked the dr who had referred Deborah for dx and then once I saw the neuro-psychologist was diagnosed myself.

So no real long, emotional journey to describe, just a huge bloody relief. Flashes of insight along the way, the more I listen to other autistic voices. There seems to be lots of people out there, searching for an ASD diagnosis as validation for various things, but I dont identify with them.  Their journey is emotional and sounds exhausting as they are trying to discover something about themselves.  But mine has been really quite straightforward and was made to help me understand my daughter better.

I think the amusing result was that I was  dx as ASD at all, as I felt my social etc skills were so much better than they might be, I was fully expecting to be dx with ASD traits, or anxiety or something else.  All of which would have been valid diagnoses in their own rights.  There is a lot of speak about so many psychologists are terrible at diagnosing female autistic's, but that wasn't part of my experience.

It helped me realise why I've always felt so much more male than female which was interesting.  Years ago I did a very simple on line test from the Natural History Museum which showed that my brain was very definitely male.  Being interested in hormones I repeated in when I was pregnant, when I was breastfeeding and about 6 months to a year after I stopped breastfeeding.  When I was pregnant and breastfeeding, I was very definitely female, and now I'm neither, I am right in the middle of male and female.  Baron-Cohen argues that it is possibly over exposure of testosterone in the womb that can cause ASD and that seems to suit me well.  I've certainly found socialising a lot easier since children, although as  might be expected, I leaning towards my special interest fields now.  Plus I've also discovered Facebook, and I find written socialising both easier than face to face and also that it  facilitates it.

The little flashes of autism insight are very helpful.  Listening to a reading of  "The reason why I jump" by  Naoki Higashida talks about the completely disorganised inner world of the ASD brain.  I always have a slight feeling of panic which I resolve by berating myself.  Thinking about it, its probably just lack of filter from poor executive function, and that is a useful way of looking at it as it will help me develop techniques for myself and Deborah.  Its not actually possible at the moment for me to look at this autism journey as just mine - it's a mother thing!

http://www.youtube.com/watch?v=wAJt6hEd3eg&feature=c4-overview&list=UUaNfyAY_YC7LElSQAd7uPmw   Is me and another autistic adult talking about our experiences of being asd.  The conversion to Youtube has made it incredibly quite, so not sure how easy it will be to hear...  But you do get to see my stims ;)

Storm in a coffee cup

Scaffolding being built.
The noise jars and slices me,
I wince and cover my ears,
and I see question marks in people's eyes.

Beautiful girl, you don't like it either.
But you a child, so you don't wince,
you don't control,
Can't waste energy on being social.

We go outside.
You are screaming and screaming,
I feel like the noise will end my world,
The clanking, the screaming, the distress, the people, the stares.

The smells, the lights, the textures of the pavement to navigate,
The light, the dark, the maelstrom of emotions.

I struggle to remain calm,
In my struggle I forget and speak to you.

You scream, and scream, the world is a big round o of your red mouth.

I collapse inside, my bones hold me up when my emotions have deserted me.

I kneel down and cling to you,
You cling to me,
We have the same need, the same feeling, the same love.

We cling as if lost in a shipwreck,
You stop screaming so much,
My emotions creep back and I start to listen.

We are one feeling, one emotion, one joy.
One love for two people,
One love for all people.

We go back inside,
Sit back down,
and carry on.

What else is there to do?

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.