coping with...

Not quite what you might think. Talking to a mum today whose ASD child attends the school to the pre school that D attended. She thinks they're great because they cope with her son. He has meltdowns at home that last up to 2 weeks whenever anything changes at school.

It took me a while to twig that actually I want Deborah's eventual school to do a hell of a lot more than just cope with. I agree, her behaviour is certainly a lot more challenging than most 4 year old's - but she has a good excuse, and it's not as if she's autistic by choice. I'm slowing down on feeling guilty for not wanting to home educate - the children are leading me in that one. Because of Deborah's language impairments I want her to be somewhere where the staff have specialist knowledge of how to support her and cherish her and not think she's inadequate, or that she just has to get used to it or any of the crap we had before. Michael is desperate to socialise, he had 11 year old cornered today in the park offering them imaginary chips and sausages, and every time we walk past a school or nursery , he demands to go. I've signed him up for next Easter, and he went very small and quiet when we were in the nursery we're thinking about - until he got outside that was. Then he loved it. So we'll see.

As for Deborah, I'm beginning to see that the confusion with my dad's behaviour is a good thing. Sure its daunting to be told that your child is disabled, that it will be life long and no one can currently predict outcome. All the signs are so far looking as if D has normal intelligence, she does age appropriate things which is great. So on one hand I have the diagnosis, the knowledge of her disability, the actuality of having a frequently very cross and extremely frustrated child - and on the other hand I have my family. All hugely intelligent, late developers, crappy social skills and often quite brilliant in their own way. Add into this mix, my understanding of the social model of disability (through my amazing friend Sharon Woodward, who died age 36) and I kind of feel quite upbeat about the whole thing. Yes the daily grind of screeching and chivvying is still there, but I'm moving away from the professional's viewpoint and developing my own.

It's also about my feelings about everyone's right to be just who they are -a closer development of a life-long interest. Yes its been tough having a bi-polar mum and an autistic dad, but it's prepared me well for this moment. I'm stopping feeling guilty for not realising earlier that D was so different - if you'd had my family, you'd understand :) But, because I do have my family, and am now working so hard to make sure D get's more support and understanding than any of us ever did, I'm hoping she will - well it's up to her. I just hope she's happy.

Goodness - back to period pains like early labour. So today was a write-off.

The self hating not in control but just so tired and cranky.

Read and remember

Well - that's an instruction for me at least. So the next time I'm attempting to save the world/ensure my children have stress free lives whilst being the biggest stress-source ever/ control time and space continuum as we know it so that Deborah's ASD will not be a drawback in anyway whatsoever, whilst not so secretly dealing with feelings of guilt, denial, grief and rather a lot of guilt, - I need to read this post.

Here goes - Rachel - relax, You are fine - this may or may not feel true. You are a loving mother, even if you feel incapable of this right now. Actually - that last, although not a nice feeling is ok in the larger scale. It's actually good to accept and listen to your non-lovingness, it won't go until you do. The world will be what it is despite you.

Rachel - your father very probably had ASD. His are the most important mental foundations that you have built yours on. If you are feeling highly stressed, it is most likely you have gone into default, scared mode, and these are the patterns you are using to try and solve whatever is going on. It won't. Dad was globally compassionate, but as an ASD person (which you certainly have many traits of, although for you the jury is out), he also feared it and was constantly trying to fix it. So are you Rachel. You grew these foundations as a response to your father trying to support your mum through bi-polar. There were decisions made that adults could and you couldn't. Trying to control it all by thinking that you are responsible for your mum's bi-polar simply by being born and then punishing yourself for every failure (how dare you fail when you have the gift of life and have ruined someone else's?) and every success (how dare you succeed at anything when you've ruined someone else life, you deserve nothing) - well it doesn't work.

My intensity of self hatred is really quite something. It kind of explains why I'm too afraid to succeed, fail and often quite ambivalent about getting out of bed. But - it's also ok. I just need to know it's there, remind myself of it's root causes and move on. Last night I was full of the worst thoughts, had been crying in desperation in the playground as I'd been angry at D and found her ASD traits completely annoying. Ian was really cross at me, and I was cross as we'd been away where we'd had full support by staying with family and it was so blissful that it was the intense fear of coming home that triggered it for me. Deborah has been getting really challenging recently, pinching and drawing blood every day for over a fortnight has been particularly hard. Coming home was hard as she's stopped on holiday when we all relaxed and I didn't want to be so stressed I started her again.

But on the upside - we now have a specialist SALT visiting once a month who will help D communicate with us and vice versa. She's particularly keen to work with D's anxieties. Thanks to the ed psych pushing, we will also have the local pre school teacher counsellor visiting fortnightly, and I've arranged for a worker from the local children's centre to come fortnightly to encourage play skill - both kids will benefit. I'm also talking to the gp soon to see how they can help and I'm hoping to get a Home Start person soon too. And we have an OT appt in September, plus there are ways to access things to start now, and the SALT will be sending me communication stuff to use at home, so since 31st March this year (when we got the appt) - well I've been busy.

As for the rest - just remember, breathe out, let go and walk on. Be Rachel.

Too awkward to discuss

Well face to face with anyone within Deborah's hearing range. Would be totally unfair. But I have no idea of what to expect from her, as such I am constantly comparing her to other children of a similar age and end up really disappointed. Isn't that a simply awful thing to think about one's own child?

She is so beautiful, and so similar to me and my dad. It's really hard to know how to react to it all, I try to just be with it, but there is so much stuff that trips me up. After a rather thrilling car ride, when I was stuck in the back with a reluctant daughter who did not want to be in her car seat and who really enjoyed all the attention she got for trying to escape - 2 weeks ago, my bruises are still healing. It's the karmic nature that's tripping me up, the physical attacks from a close female relative, too similar to what I had with my mum. Sure that's apparently how it all works, Rev Olwen once said all these cycles come round again and again but it's tough. So many of my reactions are based on things long passed.

It's also tricky as I simply don't know what to expect and I don't know exactly where the tantrums are coming from. Plus she, like many autistic people, is almost super sensitive to emotions, more so than her brother. It's odd, she doesn't understand the outright expression of emotions, but the subtle feeling of it can have her in turmoil. Last week of PMS was fun for both of us...

I'm trying to find more support - home start have no available volunteers but have asked them again. NAS do volunteers but they only come out when your child is over 5. There's plenty of online support and phone lines, but I cant guarantee I can actually talk on the phone so I tend not to use those. I do use an online forum but find my social anxieties are sometimes a little triggered. The local educational psychologist is doing a brilliant project, but her support will be coming to end soon when she will pass me over to the local pre school teacher counsellor to do Deborah's statement. This would normally done by the school that the child is in, but obviously Deborah is not in the education system at the moment. The local special school would be brilliant for Deborah as she would get SALT and OT as part of her lessons which I think she really needs. But to get there, she needs statement and of course she's no longer in the school because of how traumatic it was for her. So fingers crossed for that one. The special school has a family support worker and an autism support worker, I'm trying to access these at the moment as well as someone else who advises on continence.

It's all rather a lot to do.

At the same time, Michael is coming on leaps and bounds, wakes at 4, loves people, chips cbeebies and trains and has the most staggeringly deep voice. They both need nurturing not a mum freaking out about being 40, and feeling tired and unable to study and completely overwhelmed by the whole disabled thing.

Tried out Kalms last week, they were very effective and also compatible with breastfeeding. They even contain hops which boost milk production. Because they were so effective I felt relieved I wasn't "seriously" depressed and resolved not to take them. Bad mistake. I've now decided I will take them when I am pre menstrual as they do work and as I only need a 3rd of the recommended dose, well it's just fine. I really should get over myself.

This bit is really quite hard. Need to remember it won't last for ever.

Funny Old Year

Nothing too deep, but just realised today it's been an odd year so far. We may have known D was autistic, but it wasn't confirmed till March. We weren't expecting to get the Semantic Pragmatic dx either, and in another letter from the Paediatrician she's mentioned sensory processing difficulties. We knew about those of course, as that's why I wrote to her asking for an appt with the occupational therapist, but it seems so much more final on paper. All the stuff with pre school and now post pre school, and trying to decide where D should go to school, well it's lot. Coupled with the very basic fact that Michael has only just started sleeping through until 4 most mornings and then waking at 6 and loosing my beautiful friend Jason (who would have vomited if he'd heard me say that) well it's been a funny old year. So apologies for all the whinging, it could have been a lot worse and there's nothing there, that isn't kind of pretty every day really, but even so. Drinks for all, we near the equinox, feel the solstice fires burning or whatever floats you boat. Or doesn't, those burning fires might be a Viking and all.

Following on

Just posted this elsewhere in response to someone else's post, but cut and pasting to here, so it sinks in a little more:

"Sometimes, for me, the closed door can be a useful metaphor. I'd decided I was going to have an HIV test many moons ago, and went to see the Tibetan Buddha statues in the British Museum. The display was in the process of being refurbished so I could only see their backs, at first I felt cross and let down. Then I realised that it was because this bit I needed to do on my own steam so to speak - the Buddha within I guess. Although that's duality but I think you'll understand what I mean. So closed doors are sometimes helpful.

I've been meaning to email you anyway - Deborah has just received a diagnosis from a paediatrician as being somewhere on the autistic spectrum, and I wanted to let you know. Michael is definitely not, but both full of life, and in the main, happy. Michael's naming ceremony is soon too.

Writing the above bit about closed doors has been a useful experience, yesterday I had a truly terrible day with the children. Whenever they screamed, I did and it carried on for most of the morning, with few breaks. Luckily lunch resolved things happily, and the afternoon was peaceful. Part of it is my feeling of being unsupported and shocked and dismayed after Deborah's diagnosis (my Mother in Law and Ian, and others do support me). Another part is that we're all ill, and I think I have a chest infection too. But its the same experience as seeing the Buddha's from the back again - maybe as well as being propelled to find my own strength there is something about the backbone of the Buddha that's in there for me too? So closed doors or backbones, I guess it's how they are for you too that's useful."

It's confirmed - Deborah is autistic.

Huge Letting Go

Drank so much coffee over half term I was completely wired. And more than a little psyched. As for the bundle of nerves that used to be stomach - well lets not go there. Actually that particular knot of nerves has been there on and off for hmmm about 4 years? Although the pre disposition for it was always there.

I've been looking for ways for it too stop ruining my life but with little success. I have no doubt it will be back either. But for right now, it feels good. Simply because last week we had shocking issues getting D to pre school - well I did, I dressed her one day, and 2 days running took her screaming self the entire length of the village just to get there, OY what a horrible thing to do. Choice worked but we still had other tantrums which have been huge and horrible and distressing for all of us. Today she has a cold so is home and this is probably the reason for the screaming, but we've decided we're not going to push the issue. If she doesn't want to go, so be it. If we end up home schooling so be it. Relieved.

Just realised why it feels so wrong

Because it is. Nursing M back to sleep and holding him with all the love of the world in my arms I realised that it's the not same with D anymore. It's not her fault, it's my huge, huge fear of what's "wrong" with her, what I've done to make it worse, not done, should be doing more of etc, etc. So every single one of my actions is subjected to this intense internal scrutiny - because basically it's ALL MY FAULT.

Good to realise this and move on. Now maybe we can have lazy days and just enjoy them.

Birthday party

We had one today for the children. It was ace. I'm exhausted but thrilled.

Scraping back the layers

Inspired by paintings...

If we didn't prize paintings for the colours,

Instead found the joy in scraping back the layers,

excavating deeper and deeper until we found bare canvas

would this be like preserving old buildings?

old ruins, old foundations?

where we have to scrape back, layer and layer until we reach rock or earth or bricks?

Each layer mines deeper and deeper into our souls,

Into each part of our culture,

incising away layer of our feeling of self.

Is this why old things and creating are so important?

Because without we'd have no way of recording that internal process

of building?

Without that would we know who we are?

Would that really matter?

When you died, then so did I.

Not all of me,

just a small significant part ,that I never noticed was there, never knew

But now it's gone it feels like oceans.

Feeling guilty about feeling guilty and then getting angry doesn't help anyone. Horrible day.

One day I will stop trying so hard,

I don't want to miss your childhood in feeling guilty,

Don't want to miss you growing, becoming you whilst I shout!

Don't want to miss your baby fat legs,

Don't want to miss your chubby fists, your love, your smiles,

Dont want to swap them for anger.

Dont want to eat ashes when I could be chasing for baby kisses,

delivered with an MMMMMMMM and a MWA!

Dont want to miss out

Bad days and guilt feel so final as if the earth has come crashing down. I wish the bit of me that was still grieving about Jason, could just let go. Maybe I have to just let all the happy in around it - I think that's probably the way. All been so ill over Christmas and all ill again a few times since, plus worry worry worry about the ASD thing (despite the fact that as D is actually ill again this week, she is doing really well) - yes I need some happy in.

Sometimes it's hard to remember how much time has passed

sometimes something happens to bring the past tumbling back

then I walk with my feet on two floors

the now and the then.

It's a very odd feeling and I feel I may be going slightly mad

but its ok, the madness of not being tied to the present being a single thing

but rather pregnant with possibilities, a million different things

and of course, just the single fact of it's existence.

So it is a single thing after all

and its folly to think otherwise

but it's useful to look down at my feet

and remember where they have been

and where they are going.

A door is open and shut, all at the same time

A wound is bleeding and healed. all at the same time,

The tree is growing, yet burns in the grate, all at the same time,

We are born and yet die, all at the same time.

After we die we shatter and scatter

Becoming the fragments of memories, snatched pictures, half forgotten conversations,

Floating in peoples minds.

We fade into their memories' DNA, shaping them and their children

In turn shaping the world.

This is our shining soul, our human imortality.

http://www.careers.brad.ac.uk/feature/jason/

This thing that should be about death and feeling distraught is changing.

Like walking under trees in rain and complaining about the wind and the rain and the noise

and forgetting that I'm there, under the wind and in the rain and listening to the noise

And that just being there, right there is enough.

Jason dying has changed so much but left it the same. It's lovely to be in touch with friends I've not had contact with for years though, his final gift in a way is love. Can't undo his karma but part of me would still like him back even though in the bigger picture it's sort of ok. Well it's beyond me saying it's ok.

Grumpy day today, but the kids were still loving. My double standards amaze me - I expect them to be calm and not cross yet what do I do when I'm tired and hungry? Have to work on that one. Probably important not to be too self-judgemental.

Reed bed rippling in the light,

is that the wind blowing

or a soul parting the leaves as they pass by?