Being Cassandra

Thank God for Astryngia and her miraculous way of digging up the sort of vital information that parents of Aspies need, yet seems purposely hidden in amongst un-parent-friendly gobbledygook, the jargon steeped secret language of the 'professionals'.

Looking at the way the SEN Code is simplified into basic leaflets so that teachers can understand it, each sheet with no more then five summarised points like a Powerpoint presentation, I wonder how even our educators are supposed to get hold of the latest findings.

Anyhoo, that's how I know that this all encompassing frustration, this urge to become squeaky and tearful in pained disbelief is called being Cassandra'd.

Son has a new teacher. She has spoken with him, come to agreements with him and generally set herself up to manage him properly. This is as much to do with her personal pride as anything, but her admirable determination to excel seems to exclude me. Close home-school communication doesn't fit into a career path where the emphasis is on single handedly saving the day. Admitting that there is anything to discuss or anything that a parent could add to the plans she already has in place is just not in her game plan. I found out today that I am being sidelined - that 'close home school communication' now means me getting 'told' (well after the fact) rather than being involved.

I have just had to challenge her assumptions, ask her bluntly whether she sees the points I raised in an email as an attack on her (excellent) school, or, as I intended, as concerns that Son's differences can disrupt the flow of even an excellent school, and cause him distress as much as anybody else. Its about the boy being too much for the system, not about the system being below par. There are such fine lines to tread.

Thank God this school actually has been excellent for a good few years since he was diagnosed; that he wasn't written off. Thank God I have experienced being treated as part of a team who all want the same thing, because the sensation of shrinking in height was tangible, the dark pit of chaos and fear. The old, pre-diagnosis feeling of being treated like some sort of weirdo pushy mother who should be dismissed condescendingly as an annoyance and disruption. It flooded back in a split second and threatened to overwhelm me.

Catch 22 is if you let them see your total frustration, become squeaky or red faced or apologetic or even angry, if you become a gibbering wreck in response to their cold blindness, you only underline their original conclusion.

I have Parentlink on my side. Well, correct that, on my child's side, but part of that support for him requires that his mother is treated with due respect and not reduced to a quivering wreck of no use to anybody. Parentlink is the name for our local LEA Parent Partnership Service, and every LEA has one. Bloody invaluable.

Teachernet says:

Working in partnership with parents is a very important aspect of the Code of Practice. A strong partnership is required between the school and the parents/carer. Every effort should be made to encourage parents to work with the school and other professionals, to ensure that their child's needs are met as early as possible. In order for them to play an active part, you should provide relevant information so that they can reinforce learning in the home. With the SENCO and your support, parents should be able to:

• recognise and fulfil their responsibilities as parents and play an active and valued role in their child's education;

• (more stuff about understanding the forms and procedures)
  

For Astryngia's benefit (I'm sure she's seen it) the page on gifted and talented pupils says:

Teachers should aim to make learning challenging and enjoyable, so that all pupils, including the gifted and talented, achieve their full potential. Gifted and talented pupils need to be given opportunities to study some, or all, subjects to a greater depth and breadth and, sometimes, at a faster pace. However, it is important to bear in mind that, whether gifted or talented, a pupil is first and foremost a child who will need encouragement and support in order to develop as a whole person. This support is crucial where there are marked discrepancies between a child's gifts or talents and their emotional, physical or social development, or where there are specific learning difficulties.

There are hoops to jump through, procedures to follow. Never mind if you can see your goal two steps away; as a parent of a school age child, you are part of a team. If it involves holding hands with all these professionals, telling them they are all wonderful and expert and invaluable and life savers (sometimes its true) and skipping in circles singing Here We Go Round The Mulberry Bush all at the same time, then watch me. Its slow, its frustrating and it makes me want to cry sometimes but at least its a way forward.

Aspie - Normal Translation

Maybe that should be the other way round.

I don't think I have Aspergers Syndrome.

I DO have less than perfect social skills and prefer a structured environment. Not in my house - it's a tip - but in my head and my dealings with others. I am capable of extreme creativity, of opening up my feelings and the like, but I need to feel complete and absolute control over the situation to allow that. I love people and crowds and multiple input and constant feedback and validation, and yet hermitage suits me too.

I am one of those weirdos who respects, for example, Simon Cowell. Yes he is rude and blunt but his focus never wavers. He is completely convinced that the whole focus of the competitors in X factor is to learn and improve. So many times he and Sharon Osborne effectively say exactly the same thing to a performer, but she will pad hers out with words about 'liking them' and 'appreciating their hard work'. Simon just can't see the point of that. When he speaks, how far you have come is irrelevant compared to how far you have to go. Absolute, blunt honesty. Structure. Predictability (in as far as his mood or the performer's emotional state will never change his focus.)

Call me nuts but I get a sense of safety from that. The guy might be incredibly insulting, but he doesn't lie. Is he Aspie? I'd lay money on it if I had any.

That's the crux. I feel safest in a bullshit free zone, where there are no undertones to a communication, no layers of consideration beyond the point that is 'officially' at hand. In face to face communication I too often forget that others have multiple agendas; to be blunt, I forget that they are not up to speed; that other factors get in the way for them.

Am I an Aspie? Computer says no. (Joke - Little Britain again - click on picture for soundbite mp3)

Where's the cut off line where someone does or does not have that condition, anyway? I could probably reach out and touch it from my place on the sliding scale.

Still, through a site called About.com I found an excellent forum for Aspies at WrongPlanet.net.

I've been reading the forum thread about fitting in to a school (which one member rightly pointed out should be about fitting in at a school, because otherwise it means managing to get your whole body to fit inside, like Alice at the White Rabbit's cottage.)

I so wish I could join. I so want to be seen as one of the family, part of the team, able to converse. I want to be accepted by these people.

Why? I produce Aspergers children. My daughters escape diagnosis, my sons do not, but they have male-female equivalent brains. The multiple channels between left and right hemisphere in the female brain mean that I and my girls can hide amongst the weirdos normals with more success. We never quite feel like part of the gang and end up as leaders or outcasts (although an outcast who neither cares nor notices becomes a leader very quickly - security is magnetic.) However we are not so blatantly unfitted to the sausage factory process that is our low budget, 'cram 'em in and push 'em out all looking the same' education system.

This is my gift. Sitting as I do, so close to the borderline, I am bilingual. I get, and overuse, analogy, a 'normal' skill. I understand a lot of what the normals are saying, if they don't put too many layers into it. I am crap at office politics, at sniping and one-upmanship. However, I speak fluent Aspie.

Things that Aspies don't really 'get':

• dishonesty,
• shallow or changeable opinion,
• mood swings,
• fuzzy word choices (body language and intonation do not factor so the precise words chosen are crucial.)
  

I guess most of all I want to plough into that forum and play translator. I want so much to convince these people that they should be proud, not browbeaten, that others attacked them. That the fear and isolation they feel faced with a bunch of 'normal' (bullying, sly, manipulative, changeable) kids is what each of those so called normals actively works to avoid feeling by trying frantically to establish themselves as 'better' (a.k.a. more homogeneously interchangeable with the pack) than someone else; that every time even an adult belittles someone else it is not about attack but about defence.

Aggression is born of fear. Fear is born of insecurity. The Aspies so need to wake up and realise that they are not subnormals trying to live up to normal expectations, but lions trying to live like mice. The mice are only in charge because there are more of them, but we need to help both species to learn that lions exist. Not always better, not always worse, but different.

Its ok to be a geek, its a special gift to be able to switch from hearing and sensing more than others can take in, to focusing so completely on a task that nothing else gets in the way. Why doesn't our society value our geeks? Why does what they can't do so well cloud our vision of what they can do better, instead?

OK so I have two goals. Motivation and translation. Its not enough that the Aspies find each other, or those with a high enough IQ to appreciate them. I want to tip them off to the basic workings of the less focused mind - how to walk through the world of mice without either squashing things with their big lion paws, nor stopping to take offence or feel hurt when some mice start belittling them for not being small and squeaky.

I want to be a bridge and a validator. I want to be their mum.

Still Here

Still smoking. Like the magic porridge pot my 50 gramme pouch of baccy still has dry stuff in the bottom and so I'm just keeping on keeping on. I'm starting to think about drinking lots of water, but not until I've got the kids to school. A couple of pints from the cold tap probably isn't too wise until I'm back indoors in the warm.

Are my UK friends all stocked up and prepared to spend next week at least, stuck indoors? Haha, we're not. A month ago the news was all about the worst winter for a decade (remember 1996?), now some helpful souls are mumbling about the worst since records began in the 1800s.

Anyway - got a claim form to fill, then an appeal to write up re son's schooling next year, then a letter needs sending to the County so they can dish his special needs Note in Lieu out to all and sundry, then a meeting to organise, a website to look at rebuilding and I'm half way through an online dreamweaver course with the HTML one standing ready, so I'm not around much, this week.

I console myself that most of my American friends will also be around less and less with the work of Thanksgiving to do, so its perfect timing, if it has to happen.

I may go down my Da Silva downloads - they have a real nutzoid way of looking at life - the ones I found try to draw punters in not with the prospect of changing their own attitude, but with the prospect of using some sort of mind control over circumstances and other people, so the lower level chat rooms are full of people claiming to have 'imagined' X into liking them, or Y into giving them money.

I didn't hang around to see if the attitude gets readjusted at the upper levels, but their very early audio files for getting into a relaxed state are fantastic and they have a built in safety switch (from my perspective) at the point that they start suggesting we can reach other planets with our minds. Then the back of my own mind sticks its tongue out and starts chanting 'Cuckoo, cuckoo!' Instant wake up call.*

I don't care. The earliest tapes are just about getting you so relaxed that they can plant these silly suggestions in the first place. Although my mind won't have them, its still very restful up until then.

So, stress levels first (in a manner that doesnt involve sleeping for a week) followed by lots and lots and lots of paperwork - unfortunate as I generally smoke more at my own keyboard, so probably followed or interrupted by more work on the stress. Oh, and someone's bringing the kids home for me today and will expect a cup of tea, so I have an hour with bin bags and laundry and bleach to squeeze in there somewhere before three. Jolly fun.

Yup, this week, unashamedly, it's all about me. I'm trying to be strong and resist the urge to play comment fairy when I should be sorting my life out. Sorry.

Have you noticed, all the best people seem to be in their only little bubble of WTF at the moment? Deja Vu - we all had this back at the eclipses. Then it was about changing outlook, now it seems to be about facing the mess. Its nice when theres a cosmic pattern, when you can see the rest of the class scowling over their own exam papers too.

Advice for the day: Try and smile. If nothing else, it scares people. :-)


*If that offends anyone, then sorry, tough. I have enough rubbish in my head without letting other people poke their own faiths and beliefs in there while I'm not looking. I prefer to establish personal conjecture only when I'm wide awake, thank you very much.

Oh Bugger. Add one more to the list - finish the T-shirt shop. This to happen as soon as possible, which will be when I'm far enough into my study courses to be happy with my artwork, which means after all the school related stuff, but still.

Tut, tut, tut.

Email #17

Dear Mrs Baggage
Thank you for your e-mail; I will discuss the particular concerns you have raised with my line manager. I have asked Lewis's school to let me know the time and date of the meeting to discuss the Note in Lieu and provision for Lewis, as I will endeavour to attend this. In the meantime I will ensure that the Note in Lieu and accompanying advices are circulated to all those who provided advice, and to Parentlink.

Mrs New-caseworker

Email #16

Dear Mrs New-caseworker

Thank you for the assessment papers and Note In Lieu for my son, dated 16 November and received on Friday 18 November 2005.

Please accept this email as my permission/approval for the new Note In Lieu and related reports to be issued to all interested parties, as soon as possible.

I do have some very worrying concerns, such as the quantity of advice/guidance given on the previous Note In Lieu which is missing from this new one, with no apparent reason shown.

I am also concerned that my son's personal opinion that he is improving is being given any weight at all - he is anxious to 'improve' and to fit in, and his response to such a question would depend on who asked and what day of the week it was. Aspergers syndrome, as part of the autistic spectrum of disorders is a lifelong condition that cannot in itself 'improve'; only the way in which it is managed can be improved and success should not be taken as an indicator that the management could safely be reduced.

As we previously discussed, I know the (small) school to have been taking measures well beyond SEN+ to see him achieve any progress in his education, unmarred (or marred to the least possible degree, given resources) by distractibility or overfocussing or confusion and distress and defensive violence.

I am already disconcerted that this 'management' involves timing his reward periods and time outs to coincide with lessons where his difficulties would be most obvious - for example for the second year running he is to help with the technical side of the Xmas production in some way, mostly because he can learn the songs etc in class but cannot cope with sitting still in normal assembly hall lines. Without even more support than he currently receives they have opted to spare him from the bustle and confusion and distress of that situation (in a school with only 200 or so pupils), although this means that the curriculum is already being adjusted around him and costing him eventually vital practice at managing himself in crowds or tight spaces.

I am extremely upset at the suggestion (in the new Note In Lieu) that the curriculum should be adjusted for him, as there is no clear explanation of what this means. The idea of him attending mainstream school is for him to have full access to the curriculum, with whatever support he needs to access that.

I feel that similarly nothing has been put in place to prepare for the increased frequency and volume of stress triggers in a larger, senior school environment, nor to prepare for the likelihood of OCD or depression presenting themselves at onset of puberty, although both were listed as highly likely by the expert who diagnosed his syndrome - apparently the conditions too frequently go hand in hand.

Sincerely

Cheryl

Speechless

Son, some will know, broke his arm and is in plaster.

Others will know that he has Aspergers and is ten years old.

Why, when I know all these things, does it surprise me that he would wait until his father is away from home, to drop a penny down inside the plaster cast like its some sort of flaming slot machine? That he would veer between thinking its funny and thinking its dangerous, claiming he has no memory of doing it and then insisting its a penny, and making it set off his junior metal detector like its a party trick?

He has asked me for my eyebrow tweezers or a screwdriver - he feels he could extract the offending metal if he just had something to prod down the gap.

I am running out of padlocks and high places - God help me.

At least he has a hospital appointment coming up on Monday. A penny against sweaty, enclosed skin can't stain him green or give him blood poisoning between now and then;

can it?

Sock Monster

Like every family home, this house has a sock monster.

Son (age 10) seems to have suffered the most from it's shenanigans this year and for the past three or four weeks his sock collection has dwindled mercilessly.

You know what its like, if you save up family sized washloads - moreso when one style of item is in short supply - you end up counting how many go in the wash and doing a double check under beds and behind things to make sure you have as many (in this case socks) for the wash as possible.

You would expect my husband's socks to suffer the most - there are only two places were he removes socks from his feet, but these are at the sofa or beside the bed - he either comes home bewailing his hard day at work and slips socks and shoes off whilst angling for three quarters of the family sized sofa and control of the TV remote, or he waits until bedtime and the items end up under jeans, the newspaper crossword, a tea cup; you name it, as they begin their nocturnal migration to the darkest nether-regions of the world under the bed. In his mind the laundry basket is a bullseye - a target to aim bundles of stuff at on a weekend when I have that laundry-manic look in my eye.

Still, no, it's been Son who has managed to lose all but five or six odd socks out of the two bumper packs we bought for the start of school this autumn and whatever else survived the year as still wearable. I sent him to school in his Batman slipper socks once last week - that's about the only pair that always seems to turn up intact.

Husband doesn't believe in the sock monster. He believes in messy housekeeping (that would be me, then?), disorganised kids (that would be Son?), and a general curse on the home. He regularly berates Son for never keeping his bedroom tidy, never using the laundry basket, etc etc, whilst Son scowls and swears he isn't guilty. My darling other so quickly forgets that its normally his own stuff that disappears by magic, that his favourite grumble, especially on weekends and early mornings is "You can't put a bloody thing down for five bloody minutes in this bloody house."

Unfortunately, when he's late out the door for work and in a total flap, it never seems to be the right time to tell him that perhaps having a single place for some things, or not wandering round the house with his electric shaver every morning might be erm, better planning. Weekends I have learned to look him in the eye and say "Well lets tidy up together, then" although the phrase has to be used sparingly as it guarantees he will think of something we need from the shops, or else 'just' check his email for a couple of hours.

Husband has gone away on yet another training course. He left on Tuesday but took until Monday night to announce that he was out of decent socks etc, so I did a washload, and just before bed we sat on the sofa sorting enough pairs for his trip. He never sorts pairs otherwise, just chucks them all in his drawer and fumbles for two that match when he gets up. I noticed a couple of pairs of Son's socks had emerged with the load, so that was something. I left the lot on the sofa, meaning to finish the job in the morning.

Tuesday morning comes, and Husband leaves.

I turn to the pile of smalls waiting to be sorted and..... its not there.

The point of the story is this: that Son and I put two and two together and went and raided Husband's sock drawer. No pairs in there, as I said, so this involved tipping the whole contents out onto my bed.

Result? It was like child sock Christmas. Every missing sock was there at the back of the pile - at least five pairs of identical grey school socks and plenty more, even a couple in an olive green, a colour that Husband would never buy for himself.

No, their feet are nowhere near similar in size or any other way. No there is no way that Husband can actually say he looked at anything he threw in the drawer, except to briefly acknowledge that it was grey (or at least not pink or white,) and sock shaped.

So now I have a second reason to look forward to his return. Something to drop into the conversation on Friday, I think, just as a by-the-by. What fun.

The worst of it is that I can't get angry at him. When I watch this man with a Mensa level IQ look completely blank and bewildered; when the cogs move so slowly as he works to shift the blame that you can actually hear them grinding if you stand too close, then all I manage to do is marvel. Homer Simpson would be so proud.

Ouch

Sorry I didn't read any blogs today - I wanted to, but at 12.15 I got a call from the school.

Son was on his school trip to a local fort, listening to a speaking display, when another, larger group from the same school came into the room and were milling around so that he couldn't hear it anymore. He turned to go back to his group leader and tripped over something (he's not sure what, but thinks it might have been a foot stuck out,) landed awkwardly against something else and broke his wrist; greenstick fracture with the bone squashed like a bent drinking straw and his hand forced into a claw.

They took him to hospital but I had to get myself there behind him, and detour to the school to pick up his little sister en route.

Triage, X-ray, Consultant 1, Consultant 2 (orthopod), temporary half plaster, up to the ward, ward admittance and all the same questions all over again plus some more; anaesthetic pads ready for the drip, anaesthetist's interview, and then they snuck him in to surgery at the end of the day, 7pm this evening.

Mercifully no wires, although I had to sign consent for them, just in case.

Plaster for five weeks - through his Birthday, through the school play where he's doing the lights - he should get his arm back just in time for Christmas.

At 9pm I had to leave him at the hospital, because whilst he'd stopped demanding we go home (because he's nearly eleven, for heaven's sake) and was beginning to think he really rather wanted me there, he didn't want his little sister, who was in tears of jealousy because the day had exhausted her and she was surrounded by people with comfy beds. Husband was still on his way home from a two day training course and unreachable - I wasn't even sure if he had his doorkeys.

Poor Son had his fall just before lunchtime and had eaten nothing since breakfast at 8am. School wouldnt let him eat or drink anything from his packed lunch 'in case'. He remained so sanguine and matter of fact about his injury that one or two people questioned the diagnosis. He left theatre and the recovery ward with a bravery award certificate from each, yet when his sister started blubbing about her urgent need for her bed, a single tear formed in the corner of his eye, as he told her that now she knew how he felt, watching the rest of the ward have their dinner time before he went down. He was starving.

All that trauma, and, typical male, it was his stomach that broke the dam in the end. Having been the perfect patient all day, he fussed until they brought him drinking water, swigged down a whole glass (even though he was still too woozy to sit himself up, and even though they had warned him to sip) then declared that as proof he was well enough to eat. He consumed the packet of cheesy curlz from his lunchbox in record time for a kid with plaster round one hand and a needle in the other (I had to rip the bag right open for him and lay it on his chest), and was bewailing the ban on his chocolate bar and the loss of his 10-hour old ham sandwiches when I had to leave.

I have just phoned the hospital and discovered that yes, he kept up the requests until they gave him toast. No, against the expectations of the ward sister he had managed not to be sick, and he is now, finally, asleep.

I should be there, but my biggest worry now is how to get back there to get him home again. I have just spent over £40 in taxis and feeding his sister from vending machines, oh and two comics to make the six hour wait a little more bearable for them both. The first taxi trip, obviously, was due to emergency, the second due to the fact that coming home by bus with a tearful, exhausted little girl in tow would take something like three hours with a change in the middle and a walk at the end even if the buses were even still running - they stop at 9.

Thats a good week's shopping money gone and I'm going to have to dip into the Council Tax money to get Son home tomorrow.

Don't ask me whether it's faith in God, or plain shock, that finds me unable to work up the panic that the financial situation deserves, because I really couldn't tell you, but if I'm offline for a couple of days, I'll be fussing round my boy, or diving down his wardrobe trying to find clothes that'll go on over the plaster. At this point I don't even know if his school polo shirt will come off over it.

He still thinks he's going to collect his sister from school tomorrow to prove he's alive, and then go to his bigger sister's house for the weekend, for the fireworks. One step at a time.

Have fun.

Be right back..............

Insert Title Here. I'm Clueless.

I was determined not to write about family, to think of something witty, but the well is dry. Has anyone else noticed that for the last two days every simple little task or idea has been hampered in a million tiny but annoying ways? Or is it just me?

On the upside, the kids seem unaffected.

Girl has been told about the Chinese myth that dragons swallow up the sun in an eclipse. She has decided the eclipse is recent enough for the dragons to still be around, and this makes the walk home from school a long one, full of oohs and coos at cloud formations. Apparently the shadows on her bedroom ceiling look like the Queen of Hearts holding an umbrella (the umbrella is the lightshade). I don't know where I got such a creative kid from; she must be an aberration or a throwback. She's happy, whatever, which given our household is quite a feat.

Son (the Aspergers sufferer) has been sidetracked from appearing in the Christmas show yet again. This suits him just fine and the teachers even better, because although he loves singing, the two attendant requirements - sitting still for long periods of time and performing in front of people, are just not his cup of tea and cause him tremendous stress. Son's stress tends to be contagious. This year he is to help one of the male teachers with the lighting. I wonder if they are beginning to realise just what they've done.

Its lovely to see him so totally enthused (or, if you look at it another way, obsessing about something to do with the real world for a change) but they had to advise him of this special duty at the same time as rehearsals for the show began, so that he knew why he was excused/excluded from the practice. Now he keeps wanting to nip over to see the teacher he will be helping. Seeing himself as a work colleague, he constantly wants to brain-storm and make sure he is up to speed with developments. There is nothing to develop until the show has been finalised and lighting options can be discussed, but he goes anyway, just in case.

He keeps mentioning to me, with some awe, that there are others as good at electrics as he is, and then he alternately decides this either means he is the luckiest kid in the whole school, or that he must have a spark of genius that sets him aside from the rest and that the teachers have spotted something truly special in him. I watch his head and heart swell successively and find myself perched like a hawk in case the superiority theory takes hold and I have to advise him that its probably because the other budding electricians know how to sit still. Its been a long time since I've seen him feel this special.

The other day I was late leaving the school because Son ran over to have another quick word with the long suffering teacher whose idea this was. The teacher asked him whether he had told me about his maths tests. "Oh no, I forgot" says Son.

He apparently did two tests and got 100% in one and 98% in the other. The school is delighted. Son's reaction? "Oh hey, yeah, well, its cos I know it, thats all, but doing the lights,...wow! It means maybe the Headmaster will thank me after all four shows, because he always thanks the lighting man and the piano player and I might get my name said out, and....."

Daughter's reaction? "Yes but look at that cloud - its a man eating a baby elephant! And it's my turn to talk."

I have an aspie kid and a 'normal'. One doesn't know how to share nor how to shut up. The walk to and from school is therefore divided into talking turns, with a no-mans land where we cross the big road and they both have to shut up. One day he'll get the hang of it. Probably.

My own reaction, and probably the reason I couldn't think to do a blog post yesterday, was something along the lines of "That's nice dears, hic durr blurble, I'm a little teapot." I do find mental vacancy so therapeutic, sometimes.