Sunday, January 30, 2011

Who needs a rollercoaster when you have aspergers?

Kneeling on the floor of the hall it took all my strength to hold my struggling son and prevent him from opening the front door.  My 9 year old aspie boy wanted to 'leave home'.  Apparently he had been so bold that he couldn't live at home any more.  He didn't 'deserve to'.  It was 3.15 in the afternoon.  Smiley's bus was due to arrive, and I had no idea how I was going stop CD escaping when I opened the door to let Smiley in. Who did I turn to? One of the Autie Mums on Facebook, one who 'knows'.  She calmed me down and organised help.  I managed to get Smiley inside, and then friends arrived, some to hold him, and others to put bolts on the door.  He refused conversation, food and drink: a very bad sign as that always makes him worse. 

Some four hours later he was exhausted and signalled that he wanted a hug and a drink.   But somehow I knew that this was not over.  Clearly something had happened at school, but what?  I thought I'd sorted everything out the previous day!   On Wednesday morning the signs were not good.

The shutters were down, the eye contact was gone, there was no interaction, no cooperation, he was lashing out at everyone and everything, and it was a huge effort to get him to eat, drink, go to school, wash, go to bed.  

They say all behaviour is communication, I just wished that this was clearer, because it made no sense to me.  What kick was he getting from this carry-on?

He told me that he would cause mayhem if I sent him to school.   Well I called his bluff as I don't believe in backing down in the face of threats, and certainly not from your own children!  He had to be put on the bus...and taken off the bus.  His behaviour meant that it wasn't possible for him to stay in the outreach unit and he stayed in the principal's office all that day.  He would not talk about what was bothering him...in fact he barely spoke.

I have a boy who always goes up to bed when I ask.  That night he didn't.  He curled up in a ball in the hall and refused to move.  I tried to talk to him, his Dad tried to talk to him, but still he stayed.  So I just sat it out and after four hours he came into the kitchen and pointed up to his room.  There was no other communication.

Thursday saw another meeting at the school, with the Principal and two of the outreach unit teachers.  We went over everything.  It seemed that he was not entirely happy about the changes put in place on Monday and then a very small incident in the school on Tuesday upset him.  Upset him?  Talk about a total overreaction.  The teachers even mentioned 'selective mutism', which I found very scary.  Then we called in CD, discussed further help for him and tweaked his school timetable.   He was asked to confirm verbally that this would sort out school for him.  And eventually, he managed to say 'yes'. 

I thought they were fairly small changes, and was on edge to see what would happen next.  But he got off the school bus by himself and was calm at home.  I dared to hope that things would get better.  The local autism services are now aware that there is a problem and have promised to take action.

By Friday morning I could breathe again, and he woke up on Saturday with a smile on his face. 

Yet as I write this he wanders into the kitchen with his head down and shoulders slumped.  "What's wrong?" I ask.  "I'm fine," he says.  I guess I'll just have to wait and see what this week brings.  The rollercoaster goes on. 


Tuesday, January 25, 2011

The honeymoon is over

Ok, I haven't written much about number one son, aka aspie boy, aka CD, for a while.  Complacency?  Yep, pretty much.  There's not been a meltdown since Tuesday 31st August - the day before he started his new school - and I was so relieved that I just let the teachers get on with their job.  He seemed fairly happy.  But perhaps he was just on honeymoon. Since Christmas the relationship between CD and his new school has been developing cracks... I know yesterday was Monday, but it really didn't start well, even for a Monday. 

He refused to drink his hot chocolate because I made it with a tea spoon instead of a table spoon (this requirement having never been mentioned before).

Then he said he didn't want to go to school for the very logical reason that he doesn't learn anything.  And he hates it.  Or so he says.

An explanation: last June he left his primary school to start at an Asperger Outreach Unit (or 'small' class), one of three in his new primary school.  Here the main focus is on overcoming the difficulties that prevent the children from being in mainstream class (or 'big' class).  

That is both a benefit and a drawback for CD.  He is learning how to behave and how to cope, but he is not 'learning' so much and that is his biggest  complaint.

But if he is to join the big classes he has to conform. 

He does want to learn, but on his own terms.  "I want to learn, Mum, but not do work." Especially if that work involves handwriting.

He is 9, and in 4th year, but joins 5th and 6th years with Aspergers in their little classes for some subjects, including science which he loves.  He met some of these pupils in June, when we first looked at the school and they have been friends ever since.  But not everything has worked. He was attending the mainstream 4th class for maths, but just used to sit there doing nothing, with or without an SNA*.  So now he's back doing the work on his own in the little class.  It was a big decision taking him out of mainstream, and I really want it to work, even though I thought it would be a temporary change.  But it looks like I have to face reality again: he won't be back in mainstream school for a while, he's just not ready.

Meantime I had to get him to school yesterday. I tried every form of persuasion I could think of. Finally I promised to ring the school - at nine - and raise his concerns. I don't break promises (well I probably did when I was young and feckless but that was a long time ago), so I gathered my thoughts and rang... and they were lovely. Within a couple of hours I was rung back and told that a meeting had taken place with my son and his timetable had been rearranged.  There will be extra 'learning' through projects on subjects that interest him - wolves, tsunamis, Greek legends, stuff like that - and by spending more time with his friends in the other little classes as well. 

Yesterday I was afraid that I was being outmaneuvered by my son. Perhaps I was, but the end result sounds great doesn't it? The honeymoon may be over, but perhaps the marriage will work...

*Special Needs Assistant

Sunday, January 23, 2011

The oldest student in town...

...would be one way of summing up my style.  So I was very surprised (and delighted) to receive the stylish blogger award from the lovely Marylin at Softthistle , Pixie's Mum at Doing it all for Aleyna and also Bod for Tea. Thank you so much!


The rules of this award are:
a) Thank and link back to the person who awarded you this award
b) Share 7 things about yourself
c) Award 15 recently discovered bloggers.
d) Contact these bloggers and tell them about the award
  
So here are seven no-so-stylish things about me:

1. I'm allergic to chlorine...I used to love swimming, and when I first started work a gang of us would dash to the pool for a quick 40 lengths during lunch - a chance to impress the guys! But within a few months I was sneezing as I left the pool, and soon after that I would spend the afternoon with streaming eyes and a shiny red nose. Not a good look, so the swimming got ditched for something more attractive....running!

2. Stylish has got a whole lot harder since I was young. Much more maintenance is involved, and there are lots of new pitfalls.  Hairy toes? Who knew, I'd never checked my feet until I saw it in my daughters teen mag...

3. I didn't iron clothes until I was oh about 30 *runs away and hides in shame*.  I used to buy 'non-iron' tops for work. Life's too short right? In my twenties there was just so much I wanted to do, and domestic stuff really was right at the bottom of the (ironing) pile.

4. My hands are a disgrace. I had a couple of infected nail beds a few years ago and the nails are misshapen now. I never remember to trim them, just wait till they shear off.  So I play them down...it helps that I no longer need to wear rings.

5. I dress young....and am constantly in danger of the mutton thing. I'm still looking for a blog for the over 40s that caters for people like me who don't like bright colours, linen or stuff that needs to be dry-cleaned. Any ideas?

6. Are these stylish? I won them...and leggings, a hoodie and a t-shirt from a competition thanks to the fabulous Irish Mammy, whose blog is sadly no longer with us. 

7. I wear glasses, but whip them off at the first hint of a camera. 

So there you have it.  And I'm passing the award on to the following bloggers that I've discovered recently (apologies if you have already received it, I just lose track):




 













Thursday, January 20, 2011

Things can only get better

I'm not in a good place right now.  Outwardly, I'm still smiling, but inside I once again feel completely overwhelmed.  Not by the kids: Smiley is over her little brush with A&E, CD has 'boy flu', and Angel is on great form.

I have domestic meltdown with broken fridges, cookers, microwaves and ominous cracks appearing in the walls of the house.  Google helps, but cannot always answer every question.  I am learning, I have fixed cracks in the firebox, I've taken the garden gate off its hinges .... twice, I've made the furniture in the living rooms and bedrooms (well assembled), and more.  When I admit to being overwhelmed, I get told to apply for more respite for Smiley, and I keep thinking about the 'Riven' case in the UK, but I don't need respite, I need a fairy godmother!

One with a chisel-shaped wand.

I know that other people have much worse problems, so I keep giving myself a good talking to, and have been taking part in the lovely Reasons to Be Cheerful meme over the past two weeks.  Then a phone call out of the blue brought some more bad news this morning, but I can't share it, as it is about someone else.

So apologies if there are no happy posts about the children for a while.....but there might be x

Tuesday, January 18, 2011

Dear Mr Not-so-cool

Dear Mr Not-so-cool,

Our relationship is over.  Oh I was blind, I was seduced by your sleek lines and muscular build.  You promised so much.  You would be ultra cool, and I would have complete control over you.

I thought I'd done my research: other people on the 'net' spoke highly about you, I took careful measurements to make sure I could fit you .... through doorways.  You would be big enough to store an entire week's shopping, including all the milk.  Once the sales arrived, it would be worth digging into my savings to buy something for the future that would keep my food fresh and save me time and hassle - shopping trips with one in a wheelchair can be difficult.  Add an unwilling child with Aspergers and ... well you can imagine!

Yep, my new fridge sounded absolutely amazing.  It wasn't.

The first problem was getting it into the house.  I'd measured all the doors, but had never thought of checking the side gate.  So with frozen fingers I frantically unscrewed the door off the hinges, with a little help from the delivery guys, who kindly put it back up again afterwards. 

This wasn't a switch and go fridge, oh no!  Poor thing, it was traumatised by its trip in the van, and needed a couple of hours to relax before it could possibly do some work - like chilling food.

Meanwhile all the food from the old banjaxed fridge (and it was) was sitting gently warming in the shed across a soggy muddy garden.

I switched the fridge on, set the temperature and waited for the magic to happen.  And I waited.  I waited for five days.  Darling fridge, you never got as cool as I requested, nowhere near.  I kept expecting it to happen, I even did a big shop, which caused you to warm up so much that I had to put the food out in the shed across the muddy garden again.  And because you are digital and don't have any dials, I couldn't turn you up! 

Your customer service people - somewhere in the world - were confused.  My near-hysterical rantings about fridges not doing what they were told resulted in phones lines going dead.  Finally someone listened and agreed that you should go back and be replaced.

Your replacement arrived on Friday last.  More unscrewing of gates was involved - by me this time.  Fridge food back in shed, freezer food binned.  At first I was afraid that No 2 fridge was an uncool as you...and I started looking for a different model on the Saturday.  No 2 is now showing signs of being cool...I just hope he stays that way.  He'd better.

Yours sincerely,

Blue Sky

Thursday, January 13, 2011

Self Help for Smiley

Imagine that you'd never seen a girl with severe cerebral palsy?  Perhaps you haven't.  Now what does she look like?  How does she behave?  Before I had Smiley I wouldn't have known.

The first time I came across older children with severe cerebral palsy they were mostly sitting in their wheelchairs staring into space.  They wore bibs to be fed.  They sucked soothers.  They wore nappies.  They often spent a lot of time in front of the TV, but didn't appear to be watching it.  Was this my child's future?  My bright bubbly beautiful little girl.

It wasn't going to happen.

As well as toilet training, and 'talking', I had to help Smiley to help herself.  Her arms are not strong, and she finds it hard to lift anything, so she needs toys, food, drink, and other stuff close by where she can reach them.  She needs a good playtray.  

Not as easy as it sounds.  Equipment for children with disabilities has improved - it's much more attractive now and often in bright colours - but every child is different, so getting it right for your child can be a long slog of trial and error.  Until recently we had a wheelchair and a buggy, and I loved the buggy, as it had accessories for every situation including a small clip-on playtray for going out and about.  So I was gutted when her buggy broke in October.

I gloomily foresaw a winter stuck indoors with Smiley watching DVDs of Britney Spears on endless rewind...

lt turned out that the buggy's foot muff could be fitted to her wheelchair, and I managed to buy a cheap ski suit to stop her freezing, so that meant we could go out in the cold.....once it wasn't raining.  But the wheelchair playtray is huge, heavy and awkward - you wouldn't want to take it anywhere, let alone to Wales for Christmas.

But then this arrived in the post.


I was so busy in December that I just looked at it for the first couple of weeks, turned it inside out (I was very very tired and yes I am using it the right way round now !) and finally brought it to Wales.  Smiley started using it on the ferry...and we just went on from there. 

She used it when she opened her presents:



and to play with her new toys:



 and to eat and drink.



When not in use it just hangs off the back of the chair, and takes only a few seconds to set up.  There is a separate wipe clean mat and you can also chuck it in the washing machine.  Apparently it is also popular as a laptop tray for adults and as a buggy playtray for toddlers.  Finding equipment that really helps Smiley to do things for herself is so important, so I'd say we'll be using this for a very long time.



This is a sponsored post.

Wednesday, January 12, 2011

I wish I was an IT expert!

I'm trying to change the look of my blog for 2011, but not doing very well....this is the only template that has loaded so far.  I'm leaving it up for now, but I hope to find something a little more entertaining!

I'm getting all these incomprehensible error messages that apparently mean I'm with new blogger instead of old blogger so all the lovely templates that I like are never going to load for me!  If anyone knows if I can revert to old blogger please let me know....

Wednesday, January 5, 2011

Clean plates and skinny girls

Skinny, skinnier and skeletal. 

This is the celebrity ideal that we see every day and, more worryingly, that our children see.  As adults we know that this 'perfect' image is actually created by surgery, retouching, excessive exercise and starvation diets.  We disapprove, and reach for another chocolate.  We worry that our kids don't.  But perhaps they are more sensible about food than we give them credit for?

In this house I am the one with the worst relationship with food.  My 18 year old daughter Angel is a gymnast, a sport where there is a huge pressure to be skinny, and she is slim, but also healthy and athletic.  My aspie boy is extremely fussy about what he eats, but self-regulates the amount.  Smiley is overweight, but is the same shape as she was after her first month home on a thickened feed (not my idea!).

A poor relationship with food is surely the cause of most children being too thin? Unless they are actually undernourished or have metabolic disorders.   And culture was as often to blame in the past as it is now.  Today we have thin celebrities.  40 years ago when I was young, the cultural memory was of food shortages and starving children.  And so we were expected to leave a clean plate at the end of every meal.  No waste was acceptable.


At my school some teachers took this literally.  There was a canteen, dinner was provided and if you were unlucky and got a teacher sitting at your table it was expected that every crumb would be eaten.  I hated the food.  It was straight from an Enid Blyton novel: Tapioca Pudding, dry slices of beef with soggy vegetables.

My tenth birthday lunch was spent eating rice pudding - and the skin on it - for an entire hour, spoonful by disgusting spoonful, watched over by my form teacher.  All the other children had left the canteen to go out to play.
At home my Mum did not make me clean my plate, but she would get quite upset (in another room) about my refusal to eat.  Because that is what I did.  I became a skinny little sparrow and am still smaller than everyone else in my family.
With my own kids all I've tried to do is not force them to eat, and not show that I care when the vegetables are left in a neat pile on the side of the plate.  Their diet isn't great....I started off with good intentions, but other children and family members soon disabused my kids of the notion that bananas are treats.  At least they all eat breakfast, even if it is occasionally chocolate flavoured!  And they have fruit every day, so long as you count Ribena.

I know that eating disorders are increasing, and that some people blame the celebrity culture, but I don't believe there is an epidemic.  My kids and their friends may eat a lot of rubbish, but they don't have any real issues about food: they just eat what they like.  Many people seem to develop a taste for healthy food as they get older, so you know what?  I'm not too worried.

Inspired by a post over at Sticky Fingers.

Tuesday, January 4, 2011

So what will I do this year?

I wasn't going to do any New Year's resolutions until I read on someone blog (and I've forgotten whose!) that making them and putting them out there helped her to keep them, so here goes...

Help
To ask for help when I need it, to find out where help is available and to accept it when it is offered!  I have a bad habit of saying, oh yeah I'm fine until I'm really really not....

Fitness
To join a gym or fitness club.  I still love running, but I really need to do something a bit less solitary.

Work
To stop feeling guilty about being out of work. And to be brave and take the right job if it comes up.

Bravery
To be brave full stop, and not hide behind the children's needs.  Yes I can get a babysitter if I really try..

Anxiety
To stop getting angsty about the house, it's an old house, and will always be a work in progress.  It will never be finished.  Period.

Eyebrows
I really must get my eye brows done professionally again.  Angel does a perfect job on hers, but I just can't.