Paddling like a Swan

I've just read my blog

2011-10-31T15:53:00.000-07:00

Such as it is.. a minor blog for sure, as I simply can't commit the time to update it regularly and I'm living a pretty boring life to be honest.

But I had a quick look at old posts and something made me smile..

In 2008 I mentioned that a young man in my class had picked me as his 'special person' and that I had the dubious honour of being the one allowed to change his nappies (yup he's still in them despite our best efforts!). Fast forward almost 3 years exactly and guess what... yes I'm still changing them, and I am still the only person he will work for, get out of his transport for, do anything for.

In those three years a bond has formed between us which is hard to describe. He is an incredibly complex person with extremely challenging behaviour. He gives me a run for my money many times, and sometimes pushes me to my own limits. But I love him. It has gone beyond the 'quite liking most of the children I work with' into something deeper..

I think that our three years together has allowed me to glimpse the person behind the disability in a far deeper way that is usually possible. He is non verbal, but his body language is expressive, and he shows his humour and intelligence that hides behind a syndrome, a label, and a sheaf of paperwork. He shows me his understanding through gesture, sometimes PECS and sometimes just through his smile or posture. I feel incredibly privileged to be allowed into his world.

And I simply love him. I never expected my job would bring such good things amongst all the difficult bit. But I do. I feel lucky.

an ethical dilemna

2011-10-23T07:03:00.000-07:00

Or not.. ?

Charlie wishes to attend church. This does not entirely surprise me, as he has asked on and off for quite a while, WHY people go to church and about God.

Being Charlie he is probably one of the few children at school who actually listens when Jason our local minister does school assembly and bravely attempts to explain a little Christianity. Charlie takes it on board along with the message about BEING GOOD.

Added to this, Charlie has made a friend (YAY) at the special needs youth club and this friend is a church goer; in fact I vaguely knew his Mum way back when I first came to Oxfordshire and was still attending myself. This has increased his interest.

So, we have started attending church. Went last Sunday and this. Furthermore Charlie has been invited to go to an evening group which seems to be populated mainly with teenagers on the autistic spectrum (home from home!) All good. Everyone was very welcoming indeed, in fact it was a far friendlier experience than I remember from the long past, and the minister was both interesting and entertaining.

But. I don't belong there. Not at all.

I have every respect for practising Christians and envy their faith, but I personally don't share it. I'm not even a 'can't be bothered, never really thought about it.. go for weddings and funerals ' sort of person. On the contrary I am someone who WAS a Christian, and who spent quite some time thinking about it, to come to the conclusion that I do not accept Christianity as the truth. It's pretty complicated even in my own head.. because I am not atheist in the classic sense, (I'm quite open to the probability of their being a higher level of being and I'm pretty sure that we are spirit in a physical shell) I actually believe in the power of prayer of collective good will for want of a better term..

But I do not believe that one individual died for my sins (there is a lot more and I did study philosophy of religion and can do some pretty decent arguments)..that's the crux of it. Ergo I am not a Christian.

I do not wish to fool anyone, and even last week when someone was introducing themselves I explained that we were here because Charlie wished to learn and make up his own mind.. and certainly no one looked shocked or ushered me out of the door (phew..) however it is still tricky for me.

Ok maybe eventually he can attend on his own, but not yet and besides he needs support to access the community available to him.. and knowing he is going to be a vulnerable adult in our community I selfishly want the benefit for him that being part of a friendly church may give him.. but IS it ok? For me to be there, without being committed to it? I feel my reasoning is sound.. it's for Charlie's benefit not mine, but it still feels very odd....

sad day

2011-10-05T23:26:00.000-07:00

As a Mac user (as well as an iphone lover) today brought the sad news of Steve Job's death. 56 is far too early for anyone, and whether you love or hate the iphone, it was his creative ability and drive that changed the face of phone technology and music.. who doesn't use an ipod?

RIP

All together again

2011-06-19T07:47:00.000-07:00

Abby is home for the summer:)

It's hard to describe how utterly relieved I am to have her home again!

Ok I could do without the STUFF..yes that needs capital letters! Trev took all the seats out of the renault and it was still stuffed without an inch to spare when he brought her home. Needless to say we don't actually have the space to store most of it and my hall way now resembles a bring and buy sale.:/ However that is minor in the grand scheme of things!

She has already sorted out a summer job, and one which will allow her time to do other things; see friends, visit family and most of all RELAX.

It will also enable her to get on with the vital process of becoming well again.

I never envisaged, when she went off to Uni last September, the toll it would take on my beautiful girl Neither she nor I, anticipated the terrible homesickness that overwhelmed her that first term. It was pretty much down to her sheer determination and stubbornness that she didn't jack it in and come home.

Neither did we envisage the terrible contant low level bullying she endured in her hall of residence flat. Or the gradual effect of that bullying, grinding down her self confidence, and sending her spinning from mild OCD into anorexia. For that I will never ever forgive the persons responsible .. my mother tiger head would like to see something pretty hideous happen to those people.

BUT she is home. Skeletal. Frail. But home, mine, safe amongst the people who love her best.

Help is on its way too. For once I am going to praise the NHS to the hilt! Abby approached her GP at Uni as thankfully she has good insight into her anorexia, and the GP has been fab getting Abby into the 'system' quickly looking after her. CBT is the way forward and they have already scheduled up sessions but as they are back at Uni it's not very practical for the summer...so we are hoping for her to take up that support when she returns. In the meantime fortune has been on our side, and a friend who just happens to be a CBT therapist has offered to work with Abby for the summer here at home. How lucky is that?! Abby will begin immediately with someone I know and trust and hopefully can make baby steps to beat the demon.

She will be ok. It's not going to be easy but she will be ok....

Thought for the day..:D

2011-05-25T23:47:00.001-07:00

words of wisdom... teenagers

2011-05-07T13:13:00.000-07:00

Reblogged from Mumsnet as too good not to share!!

Dog And Cat

I just realized that while children are dogs -- loyal and affectionate -- teenagers are cats. It's so easy to be a dog owner. You feed it, train it, boss it around. It puts its head on your knee and gazes at you as if you were a Rembrandt painting. It bounds indoors with enthusiasm when you call it.

Then around age 13, your adoring little puppy turns into a big old cat. When you tell it to come inside, it looks amazed, as if wondering who died and made you emperor. Instead of dogging your doorsteps, it disappears. You won't see it again until it gets hungry -- then it pauses on its sprint through the kitchen long enough to turn its nose up at whatever you're serving. When you reach out to ruffle its head, in that old affectionate gesture, it twists away from you, then gives you a blank stare, as if trying to remember where it has seen you before.

You, not realizing that the dog is now a cat, think something must be desperately wrong with it. It seems so antisocial, so distant, sort of depressed. It won't go on family outings.

Since you're the one who raised it, taught it to fetch and stay and sit on command, you assume that you did something wrong. Flooded with guilt and fear, you redouble your efforts to make your pet behave.

Only now you're dealing with a cat, so everything that worked before now produces the opposite of the desired result. Call it, and it runs away. Tell it to sit, and it jumps on the counter. The more you go toward it, wringing your hands, the more it moves away.

Instead of continuing to act like a dog owner, you can learn to behave like a cat owner. Put a dish of food near the door, and let it come to you. But remember that a cat needs your help and your affection too. Sit still, and it will come, seeking that warm, comforting lap it has not entirely forgotten. Be there to open the door for it.

One day your grown-up child will walk into the kitchen, give you a big kiss and say, "You've been on your feet all day. Let me get those dishes for you."

Then you'll realize your cat is a dog again.

Come on spring..

2011-03-12T13:06:00.000-08:00

It's about time, isn't it?
Today was quite nice, or at least this morning I was able to head outside without a sharp intake of breath at the cold. I popped into town to get a text book for Lucy and thought how nice it was to see some sunshine at last!

The last few months of grim cold and dismal days seem to have gone on forever and I for one, always struggle to enjoy life when I'm getting up to grey days and coming home to grey evenings. Hopefully not for much longer!

We have had a few ups and downs the last few months, some good some not so much fun.
Lucy has had a horrid time of it. She hasn't been well since Xmas really; one low lying infection after another, bad colds etc.However about a month ago she became very unwell indeed.. sleeping round the clock and then these massive swollen glands appeared, and she couldn't swallow . Eventually we got to the doctors and to no-one surprise the blood tests showed Glandular Fever. No wonder she was ill!

Unfortunately she has had it pretty badly and while this week she is looking fractionally better it is going to be a long time before she is up and fully functional. This of course has had knock on effects with school. Already stressed, falling behind with some subjects and not enjoying school, she has come to the decision to drop one of her AS levels and concentrate on the other three. School aren't thrilled about it, but in the end it's better to get 3 with decent grades than risk doing badly in 4. So the maths is going going gone and hopefully she will have the chance to catch up on the other three. She has the option of picking up another for AS level next year if she really wishes but we will see how it goes. I am very relieved for her as NO exams are worth being utterly miserable about .

We also had some less than good news for Charlie this week. He has been monitored regularly at the Nuffield Orthopaedic Centre because he has developed mild scoliosis; mostly because his legs have grown unevenly, throwing his body out of kilter .
The solution to the problem is to stop the longer leg growing in order to let the other catch up and thus even out the spine, and usually this is done around the age of 16 when there is about a year's growth left. It has ben be very accurately timed so that the eventual growth is even!

Anyway this week he had a bone age scan and it was discovered he is near full grown..his bone age is a couple of years ahead of normal and so he needs the operation asap. They will put some pins into his knee to stop the growth plates and hopefully that will allow his body to realign. I'm not overly keen on the idea but in the end it will prevent further back problems and as he is nearly 6 ft already, at 13, I'm quite glad he won't be growing for another 3 years! Now we just wait for the date to come through but it should be quite soon.

The happy news is that Charlie is hopefully going to integrate into the Moderate learning difficulties centre FULL TIME in September!! He has been going there with another child, and their TA for a while now and has made brilliant progress there, and the centre feel he would benefit from being there full time:) Obviously there is a LOT of stuff to sort to make this happen.. most of it involving the LEA wrangling over who funds what, but it seems likely he will remain a Springfield pupil but that the current TA will go with both boys to support them. He won't be able to access some of the curriculum (P.E will be a big no no for example!) but if it comes off, then potentially he make be able to progress further and maybe even take some exams. Important because it will open up more options for post 16 education!

Charlie is VERY pleased as he likes it there and seems to be accepted, as is his friend. They have been in the same class since they were five so we are delighted they will be going together.

Fingers crossed it all comes off!!

And Zach is 18 on Monday... gulp.. at least most of what he does will finally be legal *grin*

try this

2011-01-12T23:24:00.000-08:00

http://worldofparadox.tumblr.com/post/2713963003

reposted from a blog someone sent me. Try it... click on the play ..put headphones in and shut your eyes..(both actions essential)!

Driving time

2011-01-06T14:06:00.000-08:00

I'm not a big fan of driving, but I seem to spend a lot of my life in the car, and most of it is while ferrying kids from one spot to another. Mum's taxi is not a joke!

On average I spend 5 nights a week taking Zach to and from work. That's 36 miles each night. Then of course Lucy being dropped off places, Abby, when she is home, Charlie to drama club, youth club.. and of course work and back every day (15 miles) shopping etc etc... It's a drag, and an expensive one at that.

BUT.. there is something which I have come to actually appreciate and something that never occurred to me before my children turned into teenagers. That something is having one-to one time with my children while in the car.

I can say without doubt that some of our most important conversations have taken place while I'm driving. If I'm taking X somewhere, ..alone, then they have my undivided attention and I have theirs. Given than much of teendom is spent finding me a boring but necessary inconvenience, I love the 'us' time that driving with a child gives me.

Sometimes the conversations are of the 'stern talking to ' variety. Sometimes I'm worried about them and need to have my fears out in the open.. sometimes they need my advice or comfort or just plain 'Mummy time' . More often than not we just chat; these are the moments when I get glimpses of their true selves, and I love it. Absolutely love it.

Tonight's though, I have to share..

My ipod playing in the car through the fm thingy. My choice, so Zach was having to listen to my top 100 as he drove home (learner driver).

Katy Perry's 'Lost' is one of my favourite tracks.. I'm not a massive fan of her Pop stuff but I really like this.

I was singing along..when I realised that Zach was too. He also likes this track. He has a nice voice.

However I was pretty amazed that he could hit the high notes.. easily! He has a deep speaking voice and a nice singing voice but listen all the way through.. yup he had no problems.

It's little moments like that, us both singing and laughing because he could sing it so easily.. that make it all worth while....

Welcome to 2011

2011-01-02T14:03:00.000-08:00

Cough. Splutter. Croak. Puke.

Pick your ailment ! Seriously I think we should mark the house with a cross !

This is getting ridiculous!

I spent the week running up to Christmas feeling rough. Made it through the big day by the power of lemsip, with Abby not far behind. Boxing day Charlie started to croak. Literally. As always he became quite poorly very quickly.. a raging fever, sickness, and a very bad chest. He has been flat out on the sofa for days, perking briefly yesterday so we thought it ok for him to go out with his lovely carer today; only to return shivery with a high fever again:(

Abby came home from work early yesterday in tears she felt so ill...

I'm hoping it's not possible to build a resistance to ibruprofen as it is all that's keeping me upright!

I can't see Charlie being back to school this week to be honest. His chest is quite bad, but the doc just says 'flu' so no antibiotics forthcoming. Trev is going to take Wednesday off (I'm on an inset day) and Thursday if necessary. If Charlie is still unwell by friday, school will have to manage without me... (that's assuming I'm upright!)

Trev has an alterior motive of course. We have decided to finally do away with the seriously grotty living room carpet and go for laminate. Our house is oddly configured so that you have to walk through the living room from the garden. That, two cats, 4 kids and an oatmeal carpet is NOT a good combo so it's time for it to go. Today we bought the flooring (ouch.. boiiiing goes the visa) and Trev has PLANS.

Being Trev this doesn't mean a quick rip up, lay floor etc. Oh no. First he has decided to decorate the hall landing and stairs as the paintwork is less than stellar. Only THEN will he rip up the ancient lino there , do the hall first and then tackle the living room. Hopefully I will be able to ~~offer cups of tea and sandwiches~~ help.

Tomorrow I take Abby back to Uni. Two weeks have been too short, but it's been lovely having her home and I shall miss her all over again..!

Here's to a healthier New Year!

Not quite right

2010-12-27T06:07:00.000-08:00

Christmas has been, and gone, and was, I think, a reasonable success.

A couple of presents need to be exchanged which is a pain, and I always feel personally responsible for failing to get the correct size etc. Ridiculous as if my kids want to be surprised then there is always going to be the odd item that doesn't fit right, but I still feel a bit bleughhh when that happens.

The family behaved themselves on Christmas day which is the main thing; having both (long divorced) parents here had the potential for disaster, but it was ok, the food was cooked and all went well.

But somehow it felt flat this year. To be fair I had been poorly in the run up to Christmas day, but coped with the aid of paracetamol. Abby was also a little unwell, and Christmas day Charlie was uncharacteristically quiet:( Now he has had a raw throat for 2 days so it was probably that, but it just felt kind of sad. He liked his presents but still felt the need to be away from everyone with his wikipedia and pencils for most of the time. Sigh.

Then today. Today was one big mess and I'm not quite sure yet where it will lead.

One almightly row with Zach leading to all of us losing our temper. Over a small issue, but an ever constant one of lack of respect, borrowing possessions and not returning them, getting abusive when asked to return items. I lost my temper and I'm ashamed of that. Trev lost his far worse and I'm not sure how repairable the damage is, relationship wise.

Maybe it will blow over. Maybe it is the moment where we lose him. I don't know. Is there a point where you accept that you are a place to sleep and not a family to someone, or is there a time when you say, fine, you go try make your own way and see how that goes.

I don't want to be a parent who just 'lets go' because I adore Zach, but I don't even know what's normal any more. I try. I am taxi driver, phone provider, food provider and he barely spends 30 mins a day with any of us. I try hard to let things pass, to not get wound up, but even in anger the way he spoke to us today, is not on. We should not have lost our tempers with him, but surely at nearly 18 he should be able to behave with some responsibility and respect?

I just don't know anymore. I'm tired and sad..

Ho Ho Ho?

2010-12-12T02:37:00.000-08:00

Ahhhh the last week of term. The lovely feeling that it really is the end of the long, cold, and usually stressiest, term of the year.

Doing xmas at school is supposed to be fun. However when you work with severely autistic children, the reverse is usually true. Doing xmas in our class means disruption to the normal routine, having higher expectations of behaviour in situations that are basically torture for some of the kids (Xmas concert... why oh why) and an awful lot of glitter and glue.

I am a bit of a grump about the xmas concert to be honest. I can't see that it serves any useful purpose. Ok Ok I know.. Mums and Dads are delighted to see little James perform and all that; BUT and it's a big but.. for most of our school, it's a nightmare for the kids and a nightmare for the staff. For every child who can proudly speak a line, or sign a song, there is another who is quivering with terror or being bribed to sit on their bench when all they want to do is get away..

I also wonder about the age appropriateness of it for the older pupils. Yes it's nice to see the nursery-juniors doing some scene from a panto (not even an xmas theme you see) but I think that if we are going to showcase our older pupils then it should be something age appropriate. One class this year did indeed demonstrate something they have been working on for months, and it was fabulous.. the rest, well.... frankly I wasn't impressed.

Oh well, tis over for another year.

This leads me onto my next xmas rumination...

Charlie and Father Xmas.

He is 13.

He believes.

Utterly.

My mother, and selected others, feel that he should be made to understand the truth. Abby Zach and Lucy are adamant that it shouldn't be spoiled for him. Trev and myself are of the mind that we can gradually phase father xmas out of his life (he only brings pressies til you are 18) without spoiling it for him.

He doesn't get teased.. in his school they all believe pretty much. Of course he may get teased at the integration classes if he mentions it but so far nothing has cropped up.

Suggestions and thoughts welcomed.. it's a tough one for us. One the one hand it's ridiculous. On the other, when so many aspects of his life are curtailed by his disabilities.. why shouldn't he keep the magic of belief that goes with his innocence? I don't know...

This is love.

2010-11-13T16:11:00.001-08:00

This is the book Lucy created for Abby. A massive hand made scrapbook , I don't know how many pages are in it (lots!), I haven't counted, but it is unique. Every photo digital or paper, that we possess, is in this book.. photos of Abby with her family, her friends, from babyhood to today. Quotes, tickets,Tv programs, lyrics; it's all there. Everything that has ever mattered to Abby is recorded in this book..

Made by Lucy. Who loves her sister so much. She worked on it for months and gave it to her yesterday.

I sat and read it , flicking page after page. Some of it is familiar to me: favourite photos (such as Abby decorating her own mini Xmas tree aged 4) but much of it isn't. Abby with her 6th form friends, dancing, drinking, having fun. Abby in different places, different worlds.

Abby at Special Kids.. many many photos surrounded by the children who have shaped her personality and propelled her to med school.. and many of Abby and Lucy together.

I never noticed really, but they have always loved each other deeply.. since the first photo of a 2 year old Abby holding Lucy and looking anxious, the bond has been strong. Abby is the strong protector, but she needs Lucy too.. and they complement each other in some indefinable way.

Abby said today that when she shows her new friends at University her book, they will understand why she is so homesick for her family.. and especially for Lucy, because no one will ever give her a gift that is so personal, so made with absolute love, as this one.

She is right.

She is lucky.

Few people get to KNOW how much they are loved.

She knows because she has Lucy, a creative, beautiful sister....

November is upon us..

2010-11-13T02:02:00.000-08:00

I almost decided to stop, as let's face it, this isn't exactly a record of my daily life. Life is too busy for my daily life!

However I think that even I can manage a once a month post just to record significant events or have a good whine (more likely):)

I have Abby back this weekend for the first time! Of course we have been to see her, but this is the first time she has been HOME; back in *her* corner of the living room, in her pj's laptop in hand. And instantly it feels like she hasn't been away.

It's funny how we can slip between 'old normal' and 'new normal' so easily. We HAVE already become accustomed to her absence; what seemed strange in the first couple of weeks, simply IS now. Most evenings consist of Trev, Lucy and myself in our usual spots in the living room. (Zach is usually at work or out, and Charlie rarely moves from his space in the kitchen). We chat , we irritate each other by talking over programmes and life flows on.

Most evenings at about 11pm Abby pops up on Skype for a quick chat. It took us a few weeks to think of using Skype, but were spurred on by the first phone bill! I usually works well enough, although sometimes our internet connections aren't quite up to it and the video link freezes, the faces disassemble then reappear and the voice quality makes it a little like talking to someone in a very foreign country who has only the haziest grasp of english!! (Think..trying to talk to broadband technical help people and you get the idea...)

Buy hey it's free.....

Back however, we slip into our old roles, (and seats) without a hitch. It is comforting because it means that while Abby isn't here all the time, nothing has really changed; she hasn't changed.

I'd like to say at this point however that I am really proud of her. The transition hasn't been particularly easy for Abby. She does NOT love her flatmates, and has battled with quite severe homesickness. I suspect a less determined individual may well have come home and given up.

Abby however knows what she wants, and after feeling low for quite a while has simply decided to get on with it, survive her year in halls and look forward to next year when she won't HAVE to live with a bunch of people who steal her food, use her pans and don't wash them and who bring back drunks at 3 am when she's trying to sleep! She has pretty much given up hoping for civilised behaviour from the girls in her flat (we won't even touch on one of the guys who is frankly, disturbed) and spends most of her free time with the guys in the flat below who are friendly and fun.

On the upside, she is LOVING her course, is getting on fine, did well in the first tests and absolutely picked the right uni for her learning style. :):) The approach is one of problem based learning. Relatively (for medicine) few lectures, lots of group work and hands on. Lots of independent study, which also suits Abby. The simulation suite in the hospital allows the medics to practise procedures on THE most lifelike 'dummies' before they get to real people. Dummies that breathe, cry, bleed.... have veins in their nearly human skin! Abby was examining a newborn last week in one session and afterwards didn't want to put it down, but sat cuddling it because it seemed so real....

OK , that's Abby caught up:)

I have another post to make but as I need to get Lucy and Charlie off to theatre group, I will save it til later. Wow.. we might make two in one day! (with photos as frankly this IS boring without...)

pending spontaneous combustion...

2010-10-13T12:09:00.000-07:00

I did consider giving up my blog entirely. Given that I have only made a handful of entries this summer it seems sensible, but, having read back over the last year or so on here it seems a shame to stop completely, so we will assume (more) regular service will resume eventually!

In brief:

1) Abby is now at Exeter Uni (Peninsula Medical School) having aced her A levels...A*AA. She has been quite homesick, which I don't think she anticipated, but nearly three weeks in she is starting to settle a little. We are having nightly quick chats on the phone which helps make us both feel better! I miss her dreadfully.

2) Zach.. still at college, tho he was thinking of leaving as he's not exactly enthusiastic. However the job market isn't rosy and he might as well finish. Still at Dominos in the evening and learning to drive quite nicely now!

3) Lucy.. now at 6th form after stellar GCSE results (all A* and A except.... drum roll.. a D in PE!) With gloriously spiralled permed hair now which makes her look like a mermaid, and working Sunday's at Burford Garden Centre .

4) Charlie gets taller and more gorgeous :)

We had a brilliant summer, our Malta holiday was just soooo much fun, we really relaxed and the kids (plus Zach's friend Danny) had a ball. Lucy now dating Danny......

Camping was wet but as fun as it always is..good friends good company!

Now back at work. Usual autumn gloom. VERY tough class. Too many bruises. Tired. Add in everything that the government are throwing at us and the urge to dump my job, dump my life and sit on my arse, is almost overwhelming. Nevertheless I trudge on.

I shall return in a more cheerful frame of mind... :)

I'm here somewhere!

2010-08-11T06:45:00.000-07:00

But you might not find me due to the head height (no I'm NOT kidding) pile of post-holiday washing that is threatening to overtake my life for a few days. So far I have done 8 loads.... and there is more to go as everything we took needs washing properly to de-sand it!

We have just had two magical weeks in Malta. Malta is where I met Trev 22 years ago and it was great to take the kids (plus Danny, Zach's friend), to show them the friendly gentle and SUNNY island.

It was hot. VERY hot. Nights were hotter than summer days here but we had air con thank heavens and being able to wander the sea front at 4am when I couldn't sleep was no real hardship.

The kids had a great time I think; the elder four were able to go out at night and stay out long after we crawled to bed although they actually seemed happy to spend most of their evenings with us. We made friends with a German family who found Zach and Danny's mad antics amusing (as did half of Qawra by the number of people photographing the two of them dancing, somersaulting etc etc) In the day we took in the local sights, swam from the rocks and the beaches and risked life and limb on the local buses.

Yes the buses. They deserve a mention of their own. I remember them from 21 years ago, the last time I visited and I am impressed to say that their drivers haven't improved one bit. Who needs Alton Towers when you can white knuckle ride a maltese bus for one euro? Clinging for dear life to the seat in front or hanging dangerously from a strap while each driver seems convinced he's doing Formula 1 at Montecarlo....! I'm not surprised they still have religious icons at the front of the bus....

Oh and queueing. Brits do it. Ok we were probably the fattest, most sun burned and frankly ugliest tourists in the country, but we were also without doubt the most polite. Certain other european nationals made getting on a bus into a sport akin to bare knuckle boxing. Knuckles, elbows , whole body shoving seemed to be the norm and as for please and thankyou? Forget it!

By week two we were still saying please and thankyou but had developed a few elbow digging techniques of our own! Still, it was fun.

Charlie enjoyed it as far as I can tell. I wish he could go off with the others but it's not an option. he struggled to find the toilet at the apartment bar downstairs let alone go out alone! he found the change of routine difficult but we introduced him to the delights of reading a daily paper and odd as it might sound this really relaxed him. That and copious scoops of italian icecream. Any other child would have returned a stone heavier with the amount he ate..that and pizza .. but not Charlie. Mind you we did walk..and walk. We used his chair for longer trips but the terrain isn't wheelchair friendly so we walked him as much as he could manage and wore him out big style!

Anyway.. a few pics.

After this we have a week at home, then off to Specialkids camp (YAY!) and of course. RESULTS.

My stomach churns every time I think of Abby's results day (I'm not at all concerned for Lucy's as we know she will do fine and go off to 6th form) If Abby isn't given the assessed grade she needs for the paper she had to miss, it could all be over for her and I just don't want to think about it. BUT that's another week away.......

Pics... (yeah and looking at them.. hair cut for me tomorrow.. I look like a witch!)

And a few more....

2010-06-27T03:29:00.000-07:00

No words needed...

2010-06-26T15:40:00.001-07:00

except this one..

BEAUTIFUL...

The saddest week

2010-06-16T13:45:00.000-07:00

On Sunday we were woken at 5 am by the phone. Trev picked it up and by the tone of his voice I knew it was something awful (plus no-one phones at 5am for a chat!)

It was my father, beside himself , because his beloved wife Pat had just died.

Pat was only 64 and the fittest person imaginable, healthy, busy, (she was glossing doors on Saturday as they were redecorating!) and also my Dad's soulmate.

She was also my dad's carer as Dad has severe disabilities and chronic illness. Without her my Dad is helpless.

Their story is an unusual one, and to my mind an incredibly moving one and without identifying all the people involved , deserves to be shared because it is beautiful.

Pat was the love of my Dad's life.

Teenage sweethearts, she became pregnant at 16, in a time and culture where it was not acceptable. The teen's parents forced their separation and subsequent adoption of their child and they were not allowed to be together. Eventually My Dad left his hometown for University where he met and married my Mum, and had me, then 16 years later , my brother. The marriage broke down and he remarried a lovely lady who became my stepmother mark 1!

However eventually they parted too and my dad was, briefly on his own... something he found very hard as he is not domesticated to say the least! By sheer coincidence someone mentioned to my Dad that there was an old school reunion coming up at his school , and being at a loose end decided to visit his old town and go.

The first person he saw was Pat. Two months later she moved in to be with him and they married.

They came to visit us, and I still remember talking to Trevor after they had gone ..the moment I met Pat I had the strangest feeling of life coming full circle, and that she was the woman he should always have been with.

Only a year later the law changed in this country, allowing individuals to seek out children that had been adopted at birth, and Dad and Pat decided to seek their child.

Not long after the letter arrived.. from America, from their daughter, and finally they were able to meet. There was no mistaking that she was their daughter, she is the image of her mum. We were all able to meet in a very lovely and moving day: my family, Pat's daughter from her own previous marriage , and their adopted daughter.. full circle indeed.

Dad and Pat had ten years together until Sunday, ten good years, despite my dad's failing health and increasing dependence.. ten years to make up for the many many apart.

Now she has gone.

The future is going to be hard, I live 90 miles away and while obviously I have been with him and can get there at weekends, I have family and a job that I can't leave. My brother is closest and is helping with the daily tasks , my lovely step sister is also travelling to help despite her own grief... we will all do as much as we can to help my Dad survive. Realistically we are going to need a care package to help my Dad with living tasks.. due to his illness he can't do much at all, cook, clean, manage...maybe he will consider moving near me , but it's too early to think about anything but coping with the days ahead...

Pat died of sudden heart failure, probably linked to her diabetes (insulin dependent since her teens), there was no sign at all, and nothing anyone could have done.

We will miss a lovely person, calm, practical, caring, incredibly creative, photographer, crafter, and my Dad's best friend.

I wish I could say thankyou to her for the time she had with Dad....

how can this be?

2010-05-23T14:03:00.001-07:00

On friday Abby went to school for the last time..... dressed like this:

(second from right )

Then in the evening she went to the Randolph Hotel in Oxford with her 6th Form friends, and teachers (some of whom got monumentally wasted and had to be delivered home by the 6th formers....!) dressed like this:

Where did my baby go and who put this woman in her place?!

I can't believe she's finished school forever. I can still see her anxious little face on her first ever day of 'big school' aged 4, with her hair in a short blonde bob, white socks and smart new uniform. Now she's 18 and soon will leave us:(

HOW DID THAT HAPPEN?!?!??!!?

I'm proud of her, I adore her, but can I please keep her a little longer??

Weebles wobble...

2010-05-09T07:47:00.000-07:00

But they don't fall down. Much. Actually I don't fall much, rather I do a bit of inelegant lurching before resuming my vertical hold...

Yes it's back. I really thought it had gone for good as the episodes have been far fewer and much shorter lived over the last year..yay. The last two weeks though have been a real pain.. balance iffy, co-ordination likewise, and a slightly dizzy sensation that comes and goes . not life threatening by any means, but nevertheless I could do without it, especially as it's so exhausting!

Saw the docs again, saw the neuro too. Not quite sure still but there are a couple of possibilities for my so named 'sporadic ataxia'. One is that it is sporadic ataxia! Unlikely to be the genetic disorder variety as there is no family history, but they want to check it out anyway, and as the neuro said.. it does just happen.

The other possibility sounds interesting.. Hemiplegic migraine. Now I assumed that one would have the classic hideous head pain but apparently this isn't necessarily so.. and it causes pretty much the problems I have. It does mean it may be worth trying the mediation to see if it helps with attacks. We'll see. In the meantime I'd be grateful if it would just go away!

Otherwise life is pretty much as normal here. The builders are gradually turning a pile of bricks into a shower room... we now have plaster board walls and a screed floor so hopefully the next few weeks should see the exciting stuff... flooring and fittings! The entire house is covered in a layer of grey breeze block dust that permeates everything, but it's a lost cause until they have finished drilling things so we just keep wiping down the essential bits!

The girls are heading into revision mode and I'm trying to chase university finance forms, get Abby sorted for her jabs etc etc.

Hopefully I will resume blogging fractionally more frequently soon... with pics of our shower room!!

just

2010-04-22T14:43:00.000-07:00

ARGHHHHHHHHHHHHHHH

Wake me up when...:

My daughters stop 'borrowing' my dry shampoo (only discovered when I needed it) my (rarely used but nevertheless mine) eyeliner and mascara.

Someone stops taking the GP prescribed senna/isphigula husk combo I have for my IBS... no prizes for guessing, cos I'm pretty damn sure I know who.

My son grows up, stops being a prat, grows up, because I have no intention of helping him learn to drive if he's going to smoke dope . He IS a dope.

In addition I'm worried about Charlie who just ins't that well, I'm hacked off with the builders who work such short hours I'm amazed they bother to even get out of bed, worried about Abby's finance forms for Uni.... it goes on.

Just whining really. Today, just today, I want the kids grown up and looking after themselves...

Dead cars, nearly dead mothers....

2010-04-07T08:27:00.000-07:00

That would be me, by the way, not MY mother. Last time I checked (which was this morning) my own mother was very much alive and well, thankfully!

Actually she and I have a system. Don't laugh.. it works for us.

Every morning I read my email as I shovel down my bowl of shreddies, and every morning there is an email from my mother entitled,

'Wed April 7th... still alive' (or whatever the actual date is)

along with any pertinent information (usually cat related, or fish, or detailing her days plans). The idea is, that if I don't get an email, I'd text, or ring, and if neither had any result I would get in my car and head for Bournemouth . So far the system has worked well for us!

My favourite email so far has to have been this one:

Thursday June 25th 2009... still alive....

(unlike Michael Jackson!)

Seriously..that's how I found out!!!!!!!!!!

Anyway, back to mothers..ie nearly dead ones, ie me. Have you ever tried this?

Spinning. AKA torture by static bike.

You are grouped in a semi circle so there is no getting away from the eyes of the (obviously) insane instructor, who makes you pedal til you think you are going to faint..and then makes you pedal some more, and faster. That was Lucy and me yesterday. It's part of our campaign to get fit (her) and help Lucy feel good about herself (me being the supporting act!). It was almost fun in a totally masochistic sort of way. True I resembled an overripe aubergine by the end of it, and I probably wasn't spinning my wheels as fast as anyone else, but I was still breathing (just) and still walking (just). Lucy enjoyed it and that's the main thing..just as well as we are going next week too!

However this morning I am hurting in places I didn't know HAD muscles .....

Onto the car. Our long suffering VW Sharan has finally conked. It has become progressively more expensive to keep going, every year the MOT is awaited with baited breath, what will it fail on this time? It's fixable..technically, but the cost is something we can't find, and so we are reluctantly going down the motability route, as this time Charlie was awarded the rate that allows us to get a vehicle.

It's not ideal, because, frankly, we use his DLA to eat.. however it will give us 2 years worry free motoring before his award is up and then we 1) pray 2) reassess whether we can manage with an old banger as by then we might have less children at home! Time will tell.

In the meantime I went into citroen today and ordered a Berlingo. Not the prettiest of vehicles, it has to be said, but it is an awesome load lugger, which for camping, getting Abby to uni, Ikea, etc etc will be good. We went for the 5 seater and will simply take two cars on the rare occasions that we need space for all of us.

I really wanted a Nissan Qashqai but it really isn't big enough..boo hoo. Hopefully we will have the car in a few weeks and at least we won't be breaking down on the way back from Tesco!

And Zach had his first driving lesson today. How scary is that? He enjoyed it. Hope his instructor did too......

Who cares?

2010-03-31T00:59:00.000-07:00

For the carer?

Warning..tired, fed up person alert.

I'm sure I should be grateful for my life. Of course I can compare mine to a million unknown worse options. I have a home my children are relatively healthy and my husband relatively sane, but you know sometimes it's still tough and some days, hours and minutes are tougher than others.

I spend my life caring in one way or another. My job.. well that's caring for other people's children, then I come home to my own. The daily grind of food, laundry and taxi-ing and the hundred other repetitive and necessary jobs that having four children entails. Yes the older ones could do more for themselves, but to be honest it's easier to just get on with things. Physical tiredness is such a minor issue in the grand scheme of things.

It's the emotional caring that gets tough and it feels like my primary role.I'm chief cheerleader, councellor, sounding board, head of police and more. Some days that's ok, somedays I'm strong and I can brush off everything the kids throw at me with the mature understanding that having teenagers is never easy, they don't mean to hurt me and that it will pass.

That's some days. Other days it hurts. I don't WANT to be on the back of a son who seems determined to please himself in life no matter what, who doesn't care enough about consequences (but will undoubtedly expect me to bail him out of trouble when it all goes badly wrong) to accept responsibility for his own behaviour.

I don't WANT to be constantly worrying whether my daughter is eating, or not eating, or purging or hating herself so badly. Some days I can be supportive and loving and try and hold it together for her sake because she needs me to hang on to sanity for her. But some days I want to just let go of it all. Fine. Eat. Don't eat. Whatever. Sometimes the sheer selfishness of her self obsession grates on me.. I don't NEED it. Her angst is of her own devising.

The worst is when I try to help her make right choices (because she hates herself when she binges) and she bites and snaps at me. You know something? That's out of order, and it's unfair. Hating herself for her lack of control but snarling at the one person who is trying to help her gain control. Same with pretty much accusing me of lying when I tell her she isn't fat. That's unfair too.Fine it's her eating disorder. Maybe I should just fuck off and let her be. Maybe she wants that.. I don't know. Maybe it would be better if I could just stand back and ignore it all, but leaving her to have a miserable teenage life seems the poor parenting option to me..

Oh I don't know. You know, just once in a while 'how do YOU feel' would be nice. Except that if someone ever did bother to ask they would probably wish they hadn't, and we'd probably both need valium by the time I finished. I'm ground down, worn thin, mentally exhausted,fed up of trying to make everything alright for everyone.

Maybe people do care. My brother is great and I can talk to him. I can't burden anyone else in my family because I don't need their worry to add to my own. Friends may care , I don't know but all have their own busy lives to live, and some who I might have looked to for support haven't been there.. oddly enough it's the few people who I don't know as well who have actually helped me. Perhaps I just don't know how to ask for help, or even what to ask for.

Probably tomorrow I will feel a little more positive.. for a while. But now, now feels bad.

Back to the Eighties....

2010-03-28T13:46:00.000-07:00

Is the name of the musical that Charlie and Lucy just performed, 5 shows in a row!
Abdabs Community Theatre group is run by a bunch of ~~nutters~~ dedicated adults who seem to find it fun to run themselves ragged shaping a motley collection of teens into an all singing all acting and dancing set of show stoppers!

This year was Charlie's third (or is it fourth?) show.. hard to believe he has been there so long; first as a junior now a senior. Lucy joined a year later and having played cheerleaders (natural talent!) in the last few shows she graduated to a lead role this year, with three solos and plenty of acting.

The musical itself is great. Especially is you are ~~old~~ mature enough to remember the original songs.. which is most of the parents! Lucy played 'Eileen' , new girl to the high school and arch geek(hence the glasses lol). The story like was pretty Grease/ HSM like but this time the popular guy turns out to be a louse. Lucy is the poor sap who thinks he really wants to take her to the prom then finds out he has been writing love letters as a joke!

She is cheered up by three stooges singing 'Come on Eileen'...:)
There was every cheesy 80's song you can think of, from "material Girl' to 'Centrefold' and many more.

Charlie was in the general ensemble but also had a few solo lines to sing of his own..and he was GREAT. It never fails to hit me when I watch him..thinking of how different life is for him but how he works so hard and enjoys himself so much . He has also made a friend there! A lovely girl, also autistic, and they have clicked..or at least they enjoy talking at eachother:):)

I was worried for Lucy that it would be too stressful, knowing how much of a perfectionist she is and also knowing that she had some pretty tricky songs. I know she can sing, but singing to yourself and singing to a crowd is a whole different ball game! I needn't have worried.. she was amazing. What's more she was by far the best actress in the whole show. I am very proud and best of all, seeing Lucy more herself than I have in a long time..animated, happy and fun.

Next year is 'West Side Story' GULP!! Zach is thinking about joining too..which would be brilliant as he can really sing and I can just see him as a Jet *bad boy* :):)

Of course they are both ~~absolutely knackered~~ tired but still buzzing. Thank heavens school finishes on Thursday as I'm not sure how we'll keep Charlie going!

We had to leave off his AFOs for the shows because a) they clonk when he moves and b) he can't change clothes very quickly at the best of times and his afos take forever! It meant that by show number three he was shaky on his feet:( At times like these we really see the impact of his hypotonia on his body; he just can't keep going the way *normal* kids can.

Doesn't stop him talking tho...:)

All in all a great week!

Not to be outdone

2010-02-28T08:43:00.001-08:00

Portia would very much like Lucy to get OFF her macbook and attend to Portia's needs. Portia makes strange things happen to keyboards if allowed to sit there for too long...

When Morph decided he wants a cuddle...

2010-02-28T08:27:00.000-08:00

That's it. You don't move again until he decides!

What you can't quite see is that he is doing the splits across Zach:) This cat has no dignity!

well this week sucked!

2010-02-24T11:45:00.000-08:00

Big time.

Funny thing, it was exactly this time last year that Charlie became very ill with a nasty chest infection..followed by the spectacular penicillin rash .

This half term decided to the week of the bowel. Or rather the impacted, damn near blocked off bowel:(

We had NO idea and I feel awful about that. As Charlie is rising 13 we let him be as independent as he can be. He only really mastered the self wipe about a year ago and since then I haven't been in the loo with him. Unfortunately that means that we had no idea that he was becoming terribly constipated. He wasn't going LESS often, on the contrary he was going more. I assumed he was just going more!

Til about a week ago when he had gone every 30 minutes and I decided to investigate, only to find, to my horror that he wasn't passing poo at all..just a LOT of jelly like mucus and blood. Lots and lots. Every 30 minutes or so. So we headed for the docs who could feel that he was indeed badly backed up and gave the usual meds. However an ENORMOUS number of sachets later he was no better, in pain and we headed for A+E where after an interminably long day waiting for docs, bloods, Xrays, the paed gastro doc saw him and admitted him.

Except our hospital was full (!!) so we had to go to one some 28 miles away.

This turned out to be a good thing as the hospital is smaller, and doesn't have the critically ill children that the JR takes from everywhere. Quieter and we had our own room , and crucially..own bathroom assigned just for Charlie!

MOST of the doctors were fine, the nurses I can't praise highly enough, especially one lady who just *got* Charlie so well. I was unsurprised to discover when chatting later, that she too has a 13 year old son with special needs...

One doctor however made me so annoyed he was lucky to escape intact. The gastro had arranged Charlie's admittance. All CGD (creepy German doc) had to do was to sort the fluids and long him in basically. However he decided he wasn't going to read the notes but wanted to hear it all again .

Fine, we start the story (for something like the 4th time of the day and it was 7pm at night) and he interrogates me and then Charlie. Charlie, exhausted, in pain and totally anxious, was totally unable to answer the docs questions. CGD then snaps at Charlie ,

'WHY don't you answer me properly? Little children can tell me these things why can't you?!'

Needless to say Charlie looked petrified.

I think I actually snarled, when I pointed out that IF the doctor had done his job and read the notes he would have known that Charlie had learning difficulties and autism. CGD looked somewhat taken aback and said 'ya I know he has autism' so I then asked him why in that case he was asking Charlie totally abstract questions that he couldn't understand , and what relevance was it that 'little children' could answer when it was obvious Charlie couldn't!

CGD stomped off shortly after that....:D

And later the nurse returned and actually congratulated me!!! I got the impression she wasn't overkeen on his manner anyway and she said most parents don't stand up for themselves or the children because they don't dare. Well usually I have a great respect for these professionals but this man was a complete tosser!!

After that it went smoothly..or as smoothly as inflicting various unpleasant but necessary procedures on a child can be. The nurses were amazed at how uncomplaining Charlie was about the horrible things done to him. I was just grateful we brought my macbook so he could watch Dr Who DVDs !

We got out this evening..the meds have started to dissolve the blockage and he should improve rapidly tho he will now have to see the 'poo clinic' in Oxford for some long term management and we will be off school til next week while he is in a state of dissolvement!

Charlie has been such a good boy and I feel so bad for him... we aren't going to let that happen again!

a day in the life...

2010-02-10T11:52:00.000-08:00

Do you know what the letters T.A stand for? Probably if you have a child with special needs you'll know... or you think you do!

Some days I am CC (crowd control) others it might be a D.L (damage limiter) Just now and again I am teaching assistant (good days!) Today my T.A stood for something different... toilet assistant!

I have been at my special school for rising six years now. Always with pupils considered the most challenging in the school. I like it..mostly. I find working with very challenging children exciting, frustrating, often humorous (sometimes, admittedly for the wrong reasons, but I assure you a black sense of humour IS essential).

Today tested my humour to the limits... also my sense of smell, ability to keep calm in a code brown crisis of EPIC proportions.

Need a laugh? Read on.

Take one yr 7 child. Doubly incontinent, autistic, exceptionally mobile, agile, and dare I say it... naughty. He is. I adore him but without any disability he would give any teacher, class, parent a run for their money. He has attitude in spades.

Unfortunately he also has a tendency to very loose bowels.

In hindsight maybe the two plates full of sweet and sour beef, cooked to perfection by Charlie's class WAS a mistake, but school dinner was rejected (and spat) with a passion and after all a boy needs food! So, having done my duty at the lunch table I skipped off for my own lunch and left said child (we'll call him Taz) to my able colleague.

Towards the end of my lunch break we heard a buzzer going.. toilet call. Not particularly unusual as often children being toileted can't resist those emergency buzzers, and so I wandered back down the corridor checking toilets as I passed. No problems.

As I opened the door to the classroom the stench hit me. The noise became louder. Heading briskly into the toilets area the source of the noise..and smell, was instantly apparent.

Picture if you will a grown man, gloved and gowned, backed against a toilet cubicle wall with a look of absolute horror on his face. In the opposite corner of the cubicle Taz. Having filled his nappy to the BRIM, he had ripped it off, thrown the contents at my colleague, and , continuing to poo, was enjoying the act spreading his efforts on every available surface.

Think "Texas Chainsaw Massacre' in brown and you get the picture.

I gloved and gowned (from the opposite corner) and contemplated our options. We do have bathing facilities which to my knowledge are rarely if ever, used. Now was the time.

First we had to move Taz from his cubicle to the bathroom across the corridor..no easy task, but we managed and thankfully he consented to climb into the bathtub where we stripped him and showered. He continued to fling poo at us (laughing all the while) while we dodged, scrubbed and literally scraped his now rapidly cementing poo from his body. Threw in a quick hair wash while we were at it, as he is difficult to shower and usually no-one can get near him (maybe that's the solution.. happy poo play = hair wash!)

Eventually, limp with effort, smelling none too nice ourselves, we managed to clean up Taz, put him in fresh clothes and back to class. Taz was happy.. it was fun!

Except.. we still had the cubicle to deal with. By now it was nearly the end of the afternoon so Taz was allowed some computer time while we faced the poop fest.

Ever tried to scrape dried poo from tile grouting? Take it from me it doesn't budge without a fight..and we don't have access to bleach. We took it in turns to gag, clean, retch, clean some more until superficially the cubicle LOOKED better.

The rest of the class were due back at any moment so in a moment of evil inspiration I couldn't resist dropping my friend's beautiful swimming towel near the bathroom door. Of course we hadn't used it, but she didn't know that:) I couldn't resist letting her rant for a few minutes before I assured her we hadn't ACTUALLY used it. It would have had to be incinerated....

It was very nice to take the children to taxis and LEAVE (having warned the cleaners that both bathrooms would need a seriously bleach-fest... we may need to buy them some choccies...)

I have showered and scrubbed and I swear I can still smell it.

Love my job. Honest. Ahhhh I hear a glass of wine calling me!

Whiter shade of pale..

2010-02-04T12:09:00.000-08:00

That would be my newly adult dear daughter.
Abby, to her credit went to give blood this week; for the first time.
She ran into several hurdles. Firstly the transfusion docs/nurses were very reluctant to believe that Abby could possibly have reached the minimum weight of 50kg (7 Stone 12) She has... but on a 5 ft 8 frame she does look incredibly long and slender and has the bone structure of Darcy Bussell; so I can understand why they thought she looked underweight.

The second hurdle however was a bit more difficult to overcome. As always they did a quick anaemia check. For those who don't give blood, it's a simple finger prick and the drops are dripped into a solution . If the blood is ok , it quickly sinks.

Abby's didn't. Instead it did the backstroke across the top of the solution and refused to go down.
Cue worried looks from the nurse.. doc called in.. a vial of blood promptly whipped from Abby's arm.
More alarm.
The results weren't good. A normal adult female should have approx 120-150 grams per litre.
Abby's stands at 86 grams. SEVERE anaemia.
They told her they were surprised she was still walking! Ordered to get to the GP asap. Told her she must be totally exhausted. I don't think Abby told them that she'd been out all weekend partying... they wouldn't have believed her!

With the transfusion service's panic letter to hand Abby actually got to see the GP Wednesday morning. Cue more questions. Weighed. measured. Told that she is underweight. Again. Asked if she has an eating disorder. (not unless you consider an addiction to celery a disorder.. she eats like a horse!) Then the doc looked back through her notes (last doctor's visit 3 years ago!!) and saw that Abby has always been as thin as a rail..it's her natural body shape!

However.. when asked a few questions it became clear that the problem has probably been there a long time.

I feel bad. There have been a lot of symptoms over a long periods, that had we KNOWN, would have pointed to anaemia a long time ago. Some I have tried to persuade her to get help for.. terribly heavy periods, the constant throat infections.
I have to admit none of us have taken much notice of the way she almost faints every time she stands up.. it happens to most people sometimes.. only hers is all the time.
The chest pain tho:( Now I do feel guilty. Abby.. who ignores her throat infections etc etc has been saying for a LONG time that sometimes her 'heart hurts' and beats fast. We have either a) laughed it off or b) pointed her towards indigestion remedies.

All of the above are classic symptoms of severe anaemia. Well now we know.
The maddest thing is , having had more blood taken by the doc (personally I think she needs all she has right now!) they can't start her on any treatment until they determine the exact type/cause. Not even a lowly bottle of iron tablets:(

Abby said it was a little unnerving seeing the doctor looking up ' advice for patients needing transfusion' while typing up her notes....

REALLY hoping it's simple iron deficiency and really glad that Abby's plan of giving blood, found the problem .. because from what we can understand she's at a level where it could be very dangerous very fast.The GP also couldn't believe that Abby wasn't totally exhausted and said that it must have been going on for a long time so that Abby has simply adjusted to not being well. I think she is probably right.

Lucy however has another theory; namely that as Abby has ADHD and used to be on Ritalin, what we thought was her calming down with age, was simply her being so anaemic she seems normal!!! LOLOL

Fingers crossed for fast treatment for my girl!

My baby...

2010-01-31T13:52:00.000-08:00

Is 18..:)

A strange way of being..

2010-01-24T02:04:00.000-08:00

I'm a sucker. I own it. I admit it. Though this time it was Trev's idea.

Charlie, if you didn't already know, is obsessed by musicals. He also loves the ones that have been on TV via Andrew LLoyd Webber's productions which pick someone to star in them.

It enthrals Charlie to a degree that is hard to describe. It goes way way way beyond normal interest or enthusiasm, even the word obsession doesn't really cover it. Once he's onto a new topic, it is ALL he thinks about. Dreams about. Talks about. His fixation takes him to a level of knowledge about his chosen subject that would fare well on 'Mastermind'. Which, when you consider, this is a young man whose learning difficulties give him an academic age of about 6 or 7 generally speaking, is pretty amazing.

His obsessions are cyclical. I can't remember when we first realised that his mind worked in this way, but his first musical obsession was (don't laugh) Shania Twain. Back then he couldn't speak but he would lie his head against the stereo speakers, rigid with excitement. He learned to sing before he could talk.

At some point he discovered musicals..we took him to see Joseph at the local theatre and that was it. Then CATS. I can still see him now that first time. We had isle seats and the cats came down amongst the audience. I think he actually stopped breathing for a while , and it was difficult to tell from his face whether he was thrilled or terrified!

We got the DVD of Jesus Christ Superstar before we ever went to see it. As luck would have it I bought the most recently filmed production (modern..and BRILLIANT) and the soundtrack. Charlie quickly learned the entire score. At this stage he couldn't read but he could hear a tune and know it in minutes and he would watch it over and over and over. A year later we discovered that JCSS was on tour. Needless to say we booked tickets.

On the night we headed to Oxford, and to our utter astonishment and delight, found that the man (Glen Carter) who played Jesus in the DVD, was back in the cast and was playing Jesus that night. I was pretty excited myself as GC is an AMAZING actor with a singing range that is very rare, but Charlie, well Charlie was as probably as near to perfect happiness as any human being can get. That's the night we started collecting autographs too...

Since then we have done lots more musicals, musical evens, Andrew Lloyd Webber's party in the park, etc etc. You get the idea. Musicals reach something deep inside Charlie, and we try to take him as often as his DLA will permit!!

Currently he's back on Oliver. Not sure why, as this was on TV some time ago and generally he falls back on non TV show musicals when there is nothing actually being screened. He started this cycle of obsession just after New Year and when I say he is obsessed I MEAN obsessed.

I wake him from school and he tells me how many tickets have been sold since the production opened. Who has been cast, when where, how many how often...

I even know the leading lady's exact weight loss....

He comes in from school, hits the imac and is straight into youtube clips. He doesn't want to talk, think about anything but that.

There is no point limiting him right now. Once mid obsession it is easier and kinder to let it run until it passes and the next one takes hold. It's harmless (if a little irritating at times) and his knowledge of his subject is just incredible. His obsessions have been the reason he learned to read and without a doubt are the overriding pleasure in his life.

So yeah we booked tickets for Oliver . Two week's time. He doesn't know . It may be mean to not allow him the anticipation but living with his excitement can be really unbearable!

The cost was obscene to put it mildly..over £200 for the three of us. How they can justify that I don't know. But for Charlie it is worth every penny.....

Two good things

2010-01-15T14:15:00.000-08:00

Today we had confirmation of our DFG's tender and next week we should get some sort of paperwork to sign and hopefully a start date. It's only taken 3 years of incredible inefficiency, considering we are only having a downstairs loo and shower to allow Charlie independence!

Originally the OT wanted a bedroom but the cost was wayyy more than we could ever add to the DFG grant ( as one friend commented at the time, did they intend using gold bricks?!) and it took a while to get through to them that we couldn't possibly find an extra 25k from some relative or bank loan!!

In the end Trev did a neat DIY job and partitioned off a section of the kitchen to make a very small but perfectly useable downstairs bedroom and the OT eventually stopped muttering. Now... maybe... I an finally help Charlie shower without getting soaked trying to reach him over the bathtub every day!

Second good thing... Charlie FINALLY started integration this week!

This is HUGE HUGE HUGE!!!

When Charlie was smaller..age 7-9 he had regular integration on our joint site with a class a couple of years below, with a couple of his class mates and it worked well. The mainstream's special needs group were not that far ahead and socially it was ok. Then it tapered off during yr 5 and 6 with less and less. He's now yr 8 and since at the secondary site has had NO integration with mainstream at all. To me this is unacceptable. He has moderate learning difficulties, and the mainstream secondary Wood Green has a unit with MLD pupils. He is not quite able enough to join them full time and nor would I want that (yet) because there are also children whose difficulties have social origins. Charlie simply could not cope with the complexity of mainstream life. However.. he has some abilities and I want him to have the opportunity to develop them as far as they can go.

Maths.

Ok he may never do algebra or trigonometry, BUT his mental arithmetic is pretty damn good for a child with MLD. He can add faster than I can (Ok that's not difficult!) and using his pencils laid out in peculiar patterns can multiply numbers in a way he can't explain and we can't understand. It is absolutely fascinating to watch him.. he hasn't been taught and he has a pause-make the pattern-know the answer in a few seconds- thing going on that amazes everyone.

So... I felt he should integrate for some maths work and yesterday he was taken by one of the senior teachers to the achievement centre (Special needs unit) where he joined 4 other pupils from the unit.

He aced it.

Absolutely aced it.

They were doing simple multiplication work.. finding how they could make sums out of 36, eg 6x6 or 12 x 3, etc. The teacher who took him is in charge of integration but hasn't seen him doing his head maths... and said he was faster than she was:) She wasn't joking either.

Best of all when he walked in, one of the children he had sat with back in yr 4 was there and called him to sit with him!! Charlie was incredibly anxious about going but he came back really excited and proud.. and happy to go again.

I am VERY happy and VERY proud. I am totally aware of the limitations.. he isn't going to be joining the yr 8 class... but he can be stretched, he can gain experience outside of his own class and socially...all good stuff.

He brought a certificate home today , presented in assembly for his great maths and he is VERY happy:)

guess what..

2010-01-13T04:51:00.000-08:00

Ma butt's COLD!

But it could be worse....

Yeah another snow day. Holed up and bored, but a thaw is on it's way if the BBC weather forecast is to be believed!

Charlie's glued to Wikipedia , Hannah Montana is blaring in the living room and the cats are trying out new ways to be annoying. This morning's pile of vomit in Charlie's bedroom isn't a NEW method exactly but it certainly is annoying. Remind me NOT to get long haired cats ever again. Food+furball= mess!

I feel somewhat derailed by the school closures. My brain needs to get back into school mode and being off school more than I've been back really isn't helping. Dread to think how the kids are going to be, as this really isn't good for continuity! If I can barely work out what day it is how should we expect them to?

I probably ought to be cooking or doing something domesticated, but hey...

Still snowy

2010-01-08T15:30:00.000-08:00

Ok I cheated... I didn't actually take this pic (nor is it in Carterton)

Reminds me of a few people I know tho, and my face FELT that colour by the time we walked back from the co-op!

Still looks pretty out there but darn scary on the roads!

no school..

2010-01-07T10:25:00.000-08:00

Again. Nor tomorrow.

I am actually relieved as I tried driving today and it was not a nice experience..as the temps have dipped amazingly (only -5 all day) and night beckons, it's going to be even deadlier in the morning and I have no desire to risk the hire car one more time.

I have no been in possession of a hire car for over a month. It's a nice enough car..a Corsa with automatic lights, wipers etc etc but it's not mine and I have been driving it in the most dangerous road conditions in 25 years!!! I'd rather be risking my neck in my own car thanks, but they rang me today and told me that while mine is finally fixed (someone reversed into my driver door wrecking it) they can't get it back to me because of the weather. Sigh...

I think I'm bored of the snow now (tho liking the not working bit) but I do like the visual. I took a few pics today just out and about.. the local ducks and swans were VERY happy when a lady turned up with a bag of pancakes for them.. shame they wouldn't stay still for me trying to take a pic!

let it snow..

2010-01-06T09:08:00.000-08:00

For some reason my blog posts aren't always dating correctly.. no matter I'm a day behind already!

Today has been a snow day . At LAST. Now I'm not saying I'd want 6 inches + of the white stuff every day but I felt we had dipped out a little while the rest of the UK caught it and we had nothing. Today was our turn and I woke at 6.15 this morning alarm for work) gazed out of the window and slunk happily back under my duvet even before the official text arrived to tell me that school was closed.. it was pretty obvious that we weren't going anywhere!!

That's the best thing about a special school.. just a few inches and the taxis can't risk it with children who may be vulnerable..and today NO-ONE in Oxfordshire got to school. Shut tomorrow too..officially. Can I just sit and smile!?!

We went out in it this morning..just to the co=op a few hundred yards away. Charlie likes the thought of snow but the reality doesn't really do much for him.. he doesn't go out with friends so there is no social aspect to it for him and a couple of snowballs from Zach quickly convinced him as usual that actually he'd rather be inside on the computer:)

This afternoon I went out and minced my way up to a friends house where we took her smaller than smallest dog out for a walk. Well a bounce really as Millie is so tiny she sort of leaps up and disappears again in the snow! Now all snowed out, red faced and ready to slump for the evening.

Happy Birthday

2010-01-03T23:45:00.000-08:00

To me.
Yeah 42. God that sounds old! I don't feel any different to 10 years ago, or even 20. I know that for a fact because I just opened my letter to myself written 10 years ago..

I have this habit, curious maybe but fun. Every few years, on my birthday, I write a letter to myself (hand written..no typing.. that's important) and tuck it away to be opened a decade hence. I started this when I was 12 and have a stack of opened (and UNopened) letters which contain my life.

Sometimes the letters are amusing to read, sometimes they are sad, and a couple of years ago I opened one which made me wish desperately for a time machine that could have let my 'now' self go back and reassure the younger me that it would indeed be all ok in the end. Reading my own old old pain was a moving and terribly difficult thing to do..but then again the whole idea is is to capture a moment in time and look back seeing how it has passed and how things move on.

Reading my letter this morning, written at 32 , was a pretty gentle affair. I was happy at home, the children were ok and having come to terms with Charlie's special needs I was finally adoring the little boy rather than grieving for the baby I should have had...tho I am right in one prediction..he's no longer quite so blonde and cute :D
It did amuse me to read my one lioner assessements of the other children aged 8,7 and 6. I was finally getting on with Abby a bit better (difficult kid!) Zach 'stroppy muddy and loving' (no change there!) and Lucy 'sweet as ever'.. again.. personalities haven't changed one bit except that ever passing year I have grown into enjoying Abby more and more now that the ADHD has subsided into 'mad teen' :) I just didn't appreciate her personality as well back then, where now she is a delight.
Trev and myself were pretty much ticking along together as we always do...:)

Tonight I shall write my letter to 'Julie aged 52' and tuck it away.
Todays photo... yes this is just how haggard I look at 7am on 4th Jan 2010..

New Years Resolution..

2010-01-03T09:39:00.000-08:00

Well I have several but as I'm likely to fail on a couple of them I'll keep them quiet... except for one very nice idea brought to me by a friend (thanks Holly!)
I am going to take a photo every day..and blog it. In theory I should have a snapshot of a year in my life.. however random the pictures. Of course I should have started a couple of days ago so I need to backdate a little already!

Christmas has been and gone, New Year was spent with around 30 friends (lots of children included in that number) in Shanklin on the Isle of Wight. I have to say that for me personally, it was our best New Year's get together yet! I loved the location.. a stone's throw from the beach, a 3 minute trot into the town. Ideal for the older kids who could escape from the adults safely if they wanted to, and besides we found the BEST sweet shop!
Just to give you an idea..it took 20 mins of Charlie examining a fraction of the sweets on show before he could possibly make up his mind.. one happy boy indeed!

The indoor pool was saltwater..curious but not unpleasant and there was a games/gym room upstairs where I foolishly decided to go on the treadmill. Let's just say I am even more unfit than I thought and my legs still hurt! (Sandy and I also played what was possibly the worst game of pool in history .. I swear Charlie and Heather together would have played better!)

Our evenings were spent in great company..generally we congregate in one cottage and the teens drift in and out (older o

nes to snag beers!) and having taken various X boxes/Wiis/guitars there was no shortage of amusement. I'm pleased to announc

e that my alcohol intake was very moderate and no hangovers on my part...

However a CERTAIN group of men sloped off to the pub on the afternoon of New Year's Eve, all returning worse for wear (and pretty much useless frankly). Didn't improve their dancing on the Wii dance off either... I'm sure someone must have some embarrassing footage of them all!

Anyway a lovely break and it was just nice to relax with people who we can really be ourselves with. My kids were fantastic this year.. no grumps from anyone (helped along by Zach and a certain other teenager become rather more friendly than is normal.. kept HIM very happy!)

OK onto my first photo...

This is Abby.. pressed up against the glass to the car having burnt her lips quite painfully. That's because on New Year's Day all 30+ of us went for a LOVELY meal at a pub. Having eaten the teens started messing about and dared eachother to eat a chilli..

'nuff said...

it hurt rather a lot apparently!

Yes she IS 18 in a few weeks and old enough to know better....

Ho Ho Ho

2009-12-19T11:52:00.001-08:00

I finished my Xmas shopping today. AND it's wrapped. Smug? You betcha! Not to mention relieved and tolerably certain that the kids will love their gifts. Hope the adults will too of course!

I'm also relieved to have finished school and now be able to wind down for a week before heading off to the Isle of Wight to be with my bestest (that IS a word..has to be!) of best friends.. people I can truly relax with. The nicest part is that the kids are as excited to be going as we are.. theoretically Abby might have wanted to do her own thing at new year given that she is nearly 18, but no, they all want to be with the small group of old friends, adults and children who know and love each other. I'm hanging onto these moments because they are growing up so fast that it won't be much longer..soon they will be off doing their own adult stuff. That's how it should be of course, but I will be very sad when I don't have all my annoying, fantastic kids together!

Had an odd experience today.. nothing to do with the above.
I was on the bus home from Oxford, loaded with 3 for 2 Boots bags, and found myself sat near a little boy and his Grandad . The little boy was very young.. muslin 'blankie' in hand and dummy, looked about two, probably three but definitely no older. He was , however, talking up a storm. Commenting on everything he could see from the top deck window, and plenty of things he couldn't! He told Grandad he could see a gravestone as we passed the church, then ' Grandad, I can see a COFFIN!' Grandad made a joke about how he went to the doctors last week because he was COUGHING and instantly the little boy caught the joke and told Grandad he was being silly, 'not THAT sort of coffin Grandad, the sort you lie down in and go underground!'
It was a delightful conversation to listen to; the little boy was very articulate and so excited by everything he saw, so animated and sweet.He was entertaining the whole bus of shopped out, weary passengers.
Then it dawned on me that I have never had that sort of conversation with Charlie. Never. He can talk.. oh boy can he. His language is copied, big words and all, from whatever his current TV obsession is. But he can't CHAT, he can't talk about anything other than his own obsessions, there is no two-way exchange. And he never in a million years would have understood the light banter and word play on the word 'coffin/coughing' that that little boy had so quickly found funny. The give and flow of conversation, the ability to really really communicate is so totally absent.
I love him adore him and am so very grateful that he can speak, that he can tell me what he wants, when he is hungry, what time X factor /Dr Who is on. But I am sad that at rising 13 his 'conversation'has never been more than a one way downloading of information on his part. I often feel guilty for feeling sad about him, when so many people I love have far far worse to worry about, but you know.. that little boy on the bus today; he was as far away from what Charlie could ever achieve as I can imagine. The gap between that 3 yr old and my tall boy is so huge and unbridgeable.

That little boy was also called Charlie...

Sorry

2009-12-09T10:46:00.000-08:00

Blogging has temporarily taken a nosedive!
We are all still alive though with varying degrees of sanity!

In brief:
School= Xmas= busy busy busy.
Home = decorating before Xmas= Ikea flat pack = lots of swearing and a few missing screws!
Abby = Interview at Exeter on Friday = medical school= major stress on my part! I found myself dreaming that *I* was at the interview and I was wearing a nappy... (psychologists figure that one out...!)
Zach = busy at college and work, curfewed, better for it:)
Lucy = Mock GCSEs = major stress though she doesn't need to be as she is fab, works hard and will do fine.
Charlie= counting down to Father Christmas on a minute by minute basis . No I'm NOT kidding, sadly. He was a narrator (which they didn't tell me) and a camel (which they DID) at the school performance today. I missed it as I was at the Farm with the older boys from my class, and while sad to miss Charlie, I certainly wasn't sad to miss the nightmare that is our class attempting to participate!

My brother was mugged at knifepoint last weekend, kicked about and unconscious and I hope whoever did it is a) caught b) eats poisonous runner beans for Xmas!

My cats are annoying me to point that Portia is beginning to look appealing as a pair of fur lined gloves and if Morph uses his cat litter tray just ONCE more (when it's NOT raining..he's just lazy) he might be the matching pair of Ugg boots....

So we are still here....

Obsessions

2009-10-30T12:06:00.000-07:00

Ok we all have them. I'm not Spikefreak (one of my emails lol) for nothing. Abby, myself and Lucy have been Buffy fans since, well since Abby was about yr 6. She and her then best friend Katie, forced me to watch a whole season of Buffy in one wet half term day..and I was hooked. We recently revisited the experience in a (successful) attempt to initiate Alice (Lucy's best friend) into the world of Buffy .Alice was sure she wouldn't like it!

A couple of episodes later and Alice wasn't going home! In fact she has pretty much lived here as we have worked our way through seasons 1-5 (22 episodes in each) We are now on season 6 and still have the final season to come. 40 Mins an episode. That's a LOT of Buffy. And Angel. And Spike.

Yup we have obsessions!

However I can put down the DVD box and walk away. Despite my ability to quote Buffy scenes , I don't do it every 5 minutes, and usually only with those who can quote back even faster (Abby!)

Charlie's obsessions are something else however, and far more wearing to live with.
He can quote Wikipedia at you til you scream ,but has absolutely no idea that other people are not interested. His most glaring autistic trait is his repetitiveness. He can walk beside you and tell you something (that you probably already know) His language will be copied from whatever he has either read or watched on television.
Exactly.
When he has finished he will start again, repeating the exact same information, in the same tone and using the exact same words. There is no deviation from the script. If allowed he can continue in this loop indefinitely.Usually I can manage three 'loops' but by the fourth my patience is wearing thin.

Charlie has absolutely NO concept that this is not conversation. He cannot 'chat', he merely downloads his information. He loves talking to people and his total lack of stranger awareness as a child has not changed one whit, it simply looks more intimidating when he stretches himself to full height , far too close to some stranger who is about to discover how tall Charlie is!

The more anxious Charlie is, the more obsessive and repetitive he becomes.Even something which, in theory, he likes, can cause him intense anxiety and obsessive stress, and this weekend we gave him his dad's old phone. Bad move. He wanted it, but the stress of it has almost been too much for him. His one school mate who has a phone, rang him. yay. Now he watches it constantly, fiddles with it (it is a basic one thank heavens) and hopes for phone calls.And stresses.

I hate how nothing can be a simple pleasure for him. Even his Wikipedia obsession doesn't seem to make him actually HAPPY. Everything is anxiety and uncertainty.

Autism isn't a good thing no matter what some of the able Aspie forums suggest.It makes every aspect of life harder for Charlie and for those of us who love him. Autism sucks.

not unbailed

2009-10-24T06:29:00.000-07:00

Never mind. Something better in fact although I'm pretty sure Zach doesn't see it that way.

The local constabulary have decided to take action against the group Zach hangs round with and have imposed Behaviour contracts with most of them..Zach included. He didn't have to sign it, and the contents were negotiable, but the essence of it is that they have to stay off the streets for 6 months.
Basically he is curfewed 10pm every night (unless he works later..they know I'm picking him up so there was no problem there, and they are glad he is working and away from the gang)
Also his moped is officially dead , which is gutting from a financial viewpoint but on the other hand the reason for his behaviour contract was 99% moped stupidity and so it is NOT going to be replaced. It's a massive pita for me, not to mention the cost of running him to work and fetching him (30 miles a night) but it means that he can't be pedding somewhere he shouldn't be, or letting mates (with no insurance or CBT) use it or any of the other 101 stupid things he has done since he had it. It's a bus pass (and he'll have to pay) for college and mother from now on.

He is gutted.. but I couldn't be more pleased, because ALL I have wanted is to get him away from Bad Harry and the others and with the lot of them curfewed and Zach working a lot, there will be little time left over, especially now we are into cold wet winter nights.Also his stupid behaviour is having tangible consequences for him.. something he badly needs. I love him enough to know he needs this and I really really hope he takes it on board.

He might have to pay for X box live membership.. going to be at home a LOT!

ahhhhhhhh

2009-10-23T11:08:00.000-07:00

Half term has finally arrived. That was a long eight weeks. Too long.
The children are tired, and as for the staff.. gruesome!

I'd like to relax next week but that just isn't going to happen. People to see, house to clean, children to (hopefully) get UNbailed....

However. I have achieved something.. tho it feels a hollow victory. Having had the term from hell at school, I bunched up my panties a couple of weeks ago, and told the head that it couldn't continue.. it was change things or I leave. Sounds drastic and drama queen-ish doesn't it? It felt it too. Generally I'm considered easy going at work, I work with the most challenging children, I get bashed up a lot and I deal with it ok because I care about the children and I like the people I'm with . But this year we were otld that three of us had to rotate every three weeks into a different class on a different site. Bad enough but this was for children with severe ASD in both classes who need absolute consistency and structure...

Needless to say it hasn't worked and those of us doing the three week stints have been stressed beyond what is fair, and all the children have suffered from the lack of continuity. You just can't DO that in classes with children with such profound needs.
I've been ill over it.. not being able to do a half decent job in either class has been distressing for me and I knew I couldn't continue. Luckily the teachers agreed it wasn't working for the classes either, but it meant that one of us needed to move.
I was one of the lucky ones and despite sticking my head above the parapet (or perhaps because of that!) I am now in MY class full time.
I express how relieved I am; the alternative was leaving and financially that would have been a disaster.. but I am very sad that my friend is having to move class ..tho just next door.. and all because management couldn't figure classes effectively. Having to get stressed, having to stick my head up and shout, horrid:(

Still for now I can relax.
Sort of.
Police station at 12 tomorrow and fingers crossed that Zach will be Unbailed and NOT curfewed as that would mean him losing his job. His crime was something foolish, not something nasty, and IMO the local police have massively over reacted to a bunch of teens who do daft things and don't think ahead.I did way worse as a teen and no-one ever arrested me!

Ho hum...

very very fed up

2009-10-09T08:40:00.000-07:00

Not even going to go into details.. lets just say that parents of teenagers understand why some animals eat their own young.

Remind me someone that this too shall pass, and in the end people have to be responsible for their own actions...

I am glad I'm not a cat tonight!

2009-10-08T15:14:00.000-07:00

Most of the time I am jealous of my beasties... they sleep 20 hours a day, do nothing for their keep, yada yada.
Tonight I discovered the flip side. Morph waved his tail past me just after a quick loving and I inhaled a large loose clump of long fluffy main coon tail fur. Five minutes of gagging later I think I coughed up a hairball.

Hairballs suck!

Of course I just happened to be talking to our newly allocated social worker... how to make an impression!! We are thinking about applying to do some weekend respite care..can't go for fulltime as we don't have a permanently free bedroom (yet!). However under the new regulations we have to do the full assessment for permanent carers and would be adopters. I am feeling really unsure about it right now as it seems incredibly invasive and while I don't have great secrets I am quite a private person and feel uncomfortable at the thought of raking over every element of my life.Maybe it will be good for me, maybe not.There are some things I don't wish to discuss!

Well we'll see.. we'll start the process and if it leads somewhere it was meant to be; if it doesn't... it's their loss!!!!!!

Crawling to bed now with paracetamol as feeling less than wonderful. I am supposed to be taking a child swimming tomorrow morning and have refused which won't make me popular but I feel grotty and know that spending time in a freezing public pool will only make me feel even worse! Being militant scares me tho...!

2009-10-07T12:41:00.000-07:00

Karma lifts its fat and exceptionally ugly arse and shits once again in your general direction.

I'm sorry for pinching that line (you know who you are!) but I couldn't just let it disappear into the ether.. it is just too perfect!

The line actually refers to my own come-uppance for laughing at a friend who has felines with dodgy tummies.At least I WAS laughing, til my own beloved Morph stalked in behind me to his litter tray and proceeded to blast it (with sound effects) before heading off leaving large brown foot prints. Need I say more? Sufficient to say I now have every smelly candle I possess burning and and the bin men are truly going to hate me for the bag I have just dumped in the bin outside.....

Another day in my life!!

Just a pic

2009-10-03T05:33:00.000-07:00

Of my boys... isn't it nice?!

I haven't been

2009-10-03T02:17:00.000-07:00

.. taking photos:(
I meant to.. truly I did, to use my camera. But being at school all week, spending all saturday ferrying kids to drama, shopping cooking, cleaning and doing the stuff I can't do while I'm at work, I have come to the sad conclusion that for me, it's a luxury I haven't got right now.It's one I deserve.. but then Trev is working this weekend as well.. neither of us have time for ourselves at the moment. I fully intend to have some photo time eventually, and I'd REALLY like a small compact in the car so that, while not as nice as my SLR at least I'd have something to capture a moment before it passed me by! I used to have a small samsung but Abby has nicked it!

I had my camera on me walking down the lane the other day tho..

no title

2009-10-03T01:52:00.000-07:00

Coz not a lot happening right now, for which I am grateful!

I *think* we have nailed Abby's personal statement.. we are both fairly happy with how it has come out and it is a fair reflection of the girl behind the A levels:) Now we wait for the teachers to do their bits and hopefully it will be uploaded to UCAS shortly. Then we keep fingers and toes crossed and hope for interviews (poor kid!)

Zach is working LOTS. I feel a bit sorry for him actually as of course he is invariably needed most at the weekend and so his social life is suffering. On the good side he is spending (I think) a lot less time with Bad Harry, a boy I think is a particuarly bad influence and a waste of space. I'm fine with him hanging around with K and D who are long time friends and no danger. I am looking forward to Zach actually getting paid as I am subbing him fuel money at the moment!

Lucy and Abby got their kickboxing uniforms this week. Abby started about 5 months ago I think and Lucy joined her a bit later. They didn't want to commit too soon but now they are certain they will continue. As I have to cough up £66 next week they had better!!!

Charlie started youth club last week! I am so pleased, as I have been looking for a mid week activity for him. Charlie of course is happy enough..or at least not UNhappy to spend all his spare time with Wikipedia his pens and his X factor repeats, but it's not exactly enhancing his social skills either.
The Youth club is a special needs one, and to be honest the majority of the kids there are from his school, BUT some are older and from elsewhere so there are new faces. I took him and as we arrived he was greeted by shouts of his name and left me without a backward glance! How great was that! Later when I went to pick him up I found him trying to play pool. He looked SO grown up! They could do with a few more girls but of course boys always outnumber girls with LDs so it's inevitable that the youth club should also be a bit short. Anyway Charlie enjoyed it and that's his wednesday nights sorted!

See.. no real news is nice isn't it!?

Good day

2009-09-14T12:48:00.000-07:00

Zach has a job!! Hallelujah!

Two things are good about this.. . 1. He will earn his own money (and instantly spend it no doubt) 2. It will keep him off the streets a bit more!
Carterton is not the best place in the world, though it's not the worst either, but hanging around all the time isn't good for anyone.. so I really really hope that he takes it seriously!

Abby came in somewhat piddled last night which was actually rather funny given that she is pretty much old enough to do that now and again without me tearing her to pieces..and she was upright and able, just very very talkative. Quite funny to see. As all her friends turn 18 I guess there will be quite a few of these parties on the horizon!
Meanwhile it's serious university thinking time. Abby has been to see three now and knows that her first choice is Cardiff..a choice I absolutely love because it is relatively near, it is beautiful, the shops are close and the sea is a bus ride away.. in short it has everything Abby needs. Now we just have to get her a place there!! As there are approximately 51 applicants for every place at med school it's going to be tough. All the applicants are bright and presumably committed, and Abby has just 47 lines on her UCAS application to sell herself as the student they want!!

She has the raw material for the personal statement but finding the right words is tricky. Every student has good brains, commitment, voluntary service yada yada.. what she, and I, in helping her to compose her statement, need to get across is her absolute passion, her absolutely certainty that this is the only job she could ever ever do.
No pressure on us then...!

Lucy, well I don't feel welcome in her life at all right now. I hadn't read her blog for months,then my gut instinct told me I needed to, and I blundered in, guns blazing. No victory there, by insisting she sees a doctor I may win one battle but it's the first offensive in what may be a long war. I know I'm right to insist, I have no doubts about my duty as a parent.. to ignore is just plain stupid, but I can't bear being hated so.
I can't even think of looking at her blog again.. I just don't want to know. I can see it in her face how she feels about me. I know teenagers don't believe their parents really feel or care and it's not her fault that I'm hurting, but I am. All I want is for her to understand that I am trying to help because I love her with every fibre in my body and soul.

But right now she barely tolerates me and that is very hard.

Mind you even the cats are barely tolerating me at the moment.. food strike both of them! Oh to be a cat....

It's OOOOOOOOver....

2009-09-09T23:31:00.001-07:00

(sing that like Roy Orbison please!)

Phew. And as Dave Barry wrote..the actual thing wasn't so bad. I do remember yelling OWWW but the lovely drugs means that's about it. Now I'm feeling slightly fraudulent because I have today off to recover..and actually I feel pretty much ok! Of course I haven't tried chasing a child across a playground , and maybe a day of rest won't harm but I do feel a bit of a fake.

I have to wait now to see the gastric docs.It was a good/bad test..good in that they spotted one problem (Diverticulosis) that can be helped, bad because despite the prep, they had difficulty getting the scope round to the furthest point..where the pain is, and so didn't get a clear view. Needless to say I'm not going to offer to go up for another one..think I'll live with it until it gets worse!

Today I'm going to make the doctors appointment for Lucy and myself. She has been eating..pointedly, in a 'Look I'm eating a bowl of sugar puffs so therefore mother you are a neurotic idiot' kind of a way. Good but I'm not fooled.. we've been here before remember?
Her resentment at being watched is almost palpable.. but at the same time she still seeks my hugs and I know that deep down in there somewhere she knows she needs me to do this. I am trying to get it clear in my own head what I want to gain from dragging her to the doctors.

It's not about weight..weight is incidental..and yes she looks fabulous at 105 pounds.. she knows she looks better than at 112 pounds or whatever and I can't even lie to her about that. It's the mental side..the self loathing. She truly can't seem to see herself anymore.. she sees a fat girl: she magnifies every imperfection into a disaster and simply cannot see herself for the beautiful child she is.

She envies Abby, but not in a mean way.. she looks up to Abby , admires her abilities and wants to be like her.It's unfortunate that Abby has always been a natural clothes hanger shape that has nothing to do with self control or diet.. she lives on a balance of celery and chocolate for pleasure , but happily wolfs down whatever Trevor or I cook. That's simply how Abby is.

Whatever the true cause, we have to find ways to help a child who doesn't want to be helped. That's doubly hard because it feels like a betrayal ..my actions will hurt Lucy. But if I don't act she may end up very damaged too. That's the difficulty. I still find it hard to believe it's REALLY THAT BAD. She's not six stone and skeletal.. she's pretty, still active, has a social life.. it can't be that bad.

Yet deep inside the fear that this is only the beginning, is overwhelming and I know we must seek help.

I definitely feel that I really didn't sign up for this!

On a lighter note.. I have a sock issue.
I buy Charlie and Zach socks. Zach ~~ruins everything he touches~~ loses and holes his and then nicks Charlie's. Charlie gets upset. Charlie likes his dark striped ones from NEXT..they are soft and comfy. He has to wear them in a certain way.. scrumpled down inside his AFOs (looks UNcomfy to me but that's his way). Zach likes them too.

SO I bought some more socks. This season's soft ones are not dark and striped, they are bright and cheerful, but the same soft rib that Charlie likes. I did not know this would be an issue. It is. Charlie told me he doesn't do bright they are not right. Sigh. No point me forcing him as he's an easy going boy but if you come up against one of his autistic things, you are in a no win situation.

Zach will be pleased....!

It's really not funny but..

2009-09-07T13:31:00.000-07:00

On Wednesday I am having a colonoscopy.
'what be that?' I hear you cry...

Well, I could elaborate but someone far more talented has done so before me and as his experience is posted all over the internet I see no reason why not to add it here..
Credit to Dave Barry who survived the experience..

Tomorrow is my 'Moviprep' day.. think of me!

Dave Barry's colonoscopy journal:

I called my friend Andy Sable, a gastroenterologist, to make an
appointment for a colonoscopy. A few days later, in his office, Andy
showed me a color diagram of the colon, a lengthy organ that appears to go
all over the place, at one point passing briefly through Minneapolis. Then
Andy explained the colonoscopy procedure to me in a thorough, reassuring
and patient manner. I nodded thoughtfully, but I didn't really hear
anything he said, because my brain was shrieking, quote, 'HE'S GOING TO
STICK A TUBE 17,000 FEET UP YOUR BEHIND!'

I left Andy's office with some written instructions, and a prescription
for a product called 'MoviPrep', which comes in a box large enough to hold
a microwave oven. I will discuss MoviPrep in detail later; for now suffice
it to say that we must never allow it to fall into the hands of America's
enemies.

I spent the next several days productively sitting around being nervous.
Then, on the day before my colonoscopy, I began my preparation. In
accordance with my instructions, I didn't eat any solid food that day; all
I had was chicken broth, which is basically water, only with less flavor.
Then, in the evening, I took the MoviPrep. You mix two packets of powder
together in a one-liter plastic jug, and then you fill it with lukewarm
water. (For those unfamiliar with the metric system, a liter is about 32
gallons.) Then you have to drink the whole jug. This takes about an hour,
because MoviPrep tastes - and here I am being kind - like a mixture of goat
spit and urinal cleanser, with just a hint of lemon.

The instructions for MoviPrep, clearly written by somebody with a great
sense of humor, state that after you drink it, 'a loose watery bowel
movement may result.' This is kind of like saying that after you jump off
your roof, you may experience contact with the ground.

MoviPrep is a nuclear laxative. I don't want to be too graphic, here,
but: Have you ever seen a space-shuttle launch? This is pretty much the
MoviPrep experience, with you as the shuttle. There are times when you
wish the commode had a seat belt. You spend several hours pretty much
confined to the bathroom, spurting violently. You eliminate everything.
And then, when you figure you must be totally empty, you have to drink
another liter of MoviPrep, at which point, as far as I can tell, your
bowels travel into the future and start eliminating food that you have not
even eaten yet.

After an action-packed evening, I finally got to sleep. The next morning
my wife drove me to the clinic. I was very nervous. Not only was I worried
about the procedure, but I had been experiencing occasional return bouts of
MoviPrep spurtage. I was thinking, 'What if I spurt on Andy?' How do you
apologize to a friend for something like that? Flowers would not be enough.

At the clinic I had to sign many forms acknowledging that I understood and
totally agreed with whatever the heck the forms said. Then they led me to a
room full of other colonoscopy people, where I went inside a little
curtained space and took off my clothes and put on one of those hospital
garments designed by sadist perverts, the kind that, when you put it on,
makes you feel even more naked than when you are actually naked.

Then a nurse named Eddie put a little needle in a vein in my left hand.
Ordinarily I would have fainted, but Eddie was very good, and I was already
lying down. Eddie also told me that some people put vodka in their MoviPrep.
At first I was ticked off that I hadn't thought of this, but then I
pondered what would happen if you got yourself too tipsy to make it to the
bathroom, so you were staggering around in full Fire Hose Mode. You would
have no choice but to burn your house.

When everything was ready, Eddie wheeled me into the procedure room, where
Andy was waiting with a nurse and an anesthesiologist. I did not see the
17,000-foot tube, but I knew Andy had it hidden around there somewhere. I
was seriously nervous at this point. Andy had me roll over on my left side,
and the anesthesiologist began hooking something up to the needle in my
hand. There was music playing in the room, and I realized that the song was
'Dancing Queen' by Abba. I remarked to Andy that, of all the songs that
could be playing during this particular procedure, 'Dancing Queen' has to
be the least appropriate.

'You want me to turn it up?' said Andy, from somewhere behind me. 'Ha
ha,' I said. And then it was time, the moment I had been dreading for
more than a decade. If you are squeamish, prepare yourself, because I am
going to tell you, in explicit detail, exactly what it was like.

I have no idea. Really. I slept through it. One moment, Abba was shrieking
'Dancing Queen! Feel the beat from the tambourine' and the next moment, I
was back in the other room, waking up in a very mellow mood. Andy was
looking down at me and asking me how I felt. I felt excellent. I felt even
more excellent when Andy told me that it was all over, and that my colon
had passed with flying colors. I have never been prouder of an internal
organ

See? Well let's be positive.... I'll be clean inside and the NHS are doing it for free!!!!!

what else can I do?

2009-09-04T16:35:00.000-07:00

- Abby remarked on how skinny i am today. She said I am too skinny and my clothes don’t fit me. That my jeans are baggy now and when I replied with “They always have been” she said “Not around your thighs! You look like your legs have disappeared.” She looked at me like ‘too skinny’ and said I was stick thin. I said I hadn’t lost any weight and she said I definitely had and stared and me in a ‘your too thin way’ for ages.

- She lost weight being ill and at Reading and wants to gain it so is going to eat loads. I am the opposite, wanting to lose weight. She is one of those girls who eat loads but struggle to put on weight and is tall and beautiful… she wants to stay a healthy weight though. Wish I could be like that.

- Was skinny. Had a coffee and a mini Maoam now feel fat.

- Have to eat because I’m with Charlie. Going to get a Happy Meal because it’s smaller. Going to be such a fat bitch though.

- Hunger pang. It hurts.

- I’m so fat right now. Still in Oxford. I’m huge! May as well start eating like a bitch now. Had about 550 calories in food! A bloody Mcdonalds! Then about a million in drinks. Coffee. Half a childs strawberry milkshake and about half a shakeaway milkshake. There is no way in hell I weight 7 1/2 stone now! Feel like I’m going to throw up! So fat. I did see Toby though and got 3 new tops from Zara.

- I am actually so full and so damn fat. Fucking shake and Happy Meal.

- Head in knees. So fat. Ugh. I would do anything to erase the food I have eaten.

Food stuff (Like it isn’t all):""

- It’s been more than 48 hours since I last ate something! It’s 4 o’clock now… Last thing I ate was a chocolate lolly on saturday. That was that days food. I’m not really hungry though. Things might change when i get that curry inside me.

- Just had a mushroom.

- Feel and look seriously bloated. How can that be when in two days i have only eaten a mushroom? My hair looks short too. Bad day.

Still 107, tthe last 2 pounds will not shift!

- Just ate the rest of my Chicken Choi Mein, just under a half… Feel like I’m going to be sick but I’m going to need some if I’m drinking.

- You know it’s bad when you slightly hope to throw up at night. Shit.''

Yes I read this tonight..and more, much much more, on Lucy's blog.

I haven't looked for months because I a) wanted to give her privacy b) I'm scared to read.

You can see why. These are just a couple of bits from the last few entries detailing her attempts to not eat..and her totally screwed up head.

No she's not desperately thin (now 105 pounds ) but she was more, and she was healthy and she is determined to starve herself. Her mental state is completely obsessed with being thin. She is anorexic.

I don't know what to do. I probably did the worst thing.. I read her blog, I stormed in and said 'that's it ..you see a doctor with me or you don't go out again'

I actually mean it. I would like to remain oblivious.. because it's easier. But I can't can I? Not anymore. We have to seek help and she has to accept it. If this year is screwed while she fights me, so be it. I have printed out some of her blog for the nice GP I went to months ago when this started.. so she can read for herself and not believe Lucy when she lies and says it's really not a problem. It is a problem.

Where did I screw up so badly that Lucy needs to hurt herself this way?

On top of this I had Charlie sobbing tonight. He never cries. Ever. He had told Carmen his little friend at school that he couldn't be her boyfriend because he had a girlfriend in America..Lyndsey. A girl we met once. He doesn't understand that Lyndsey can't be his girlfriend because she is in the USA.. but he has been saying it forever and we pointed out it's just not real. he was devastated.. not because Lyndsey isn't his girlfriend but because he had said she was and therefore he had told a lie. His view of the world is black and while. he was so distressed..like nothing I have seen before.

I hate hormones and teenage stuff that he can't understand and yet needs to experience.

I'm reading a lot of soul searching blogs at the moment.. lovely friends.. friends who deserve my support. ..friends who deserve me to be a friend when I'm just not being one.

So right now I'll make a public apology... I'm sorry. I can't be a decent friend to anyone right now because right now my own world is in pieces. If the bits ever come together again I'll be right back there for you. In the meantime I'm hanging on by a thread.

I don't want to be here anymore. I want to go away. I won't because who else is going to deal with this stuff? No-one.

But I still want to run away.,

I'm back

2009-08-23T16:14:00.000-07:00

Back to life... back to reality.. so the song goes. .. but actually reality hasn't been so bad this week.

Camping was, of course, fabulous. Did I mention we were going to our Specicalkidsintheuk camp??
I won't go into so much detail as I know others bloggers linked to mine have.. (see 'behind the child' for beautiful insight into why Spkids is so special) but there are a few things that were important for me.

I think what's interesting though is that while we all go away as families with special needs children, to camp and have fun with friends, we all bring home something slightly different from it, adults and children, those with disabilities and the siblings without.

I love seeing the siblings race to greet eachother again.. some of them (including mine) have now known each other for many years and the bonds of friendship are very strong indeed. However they don't exclude the newly joined families.. I watched uncertain teens hovering in the background dragged into joining in and relaxing with the ones who have been there years.
I watched my daughters become children again..in the best way..
Not so grown up looking are they? Girls who usually wouldn't be out of bed (by choice) before lunchtime, and OMG don't let anyone see my without my Zara T shirt and best jeans.... face painted and all proudly wearing their Specialkids polo shirts...they disappeared in the afternoon to go on an adventure (really!) and found themselves in what they THOUGHT was a field of bamboo...

So of course they ate some....
We are not convinced it really was bamboo at all and Sam was inexplicably SICK .. but who knows.. they enjoyed themselves.!!

So much so that they went back another day..taking an adult with them, to explore some more! The adult (and yes I use that word loosely.. Paula..lol) wasn't supervising..

For Charlie, who after all is our reason for being there, camping is sometimes hard. He made a very big effort to socialise (repeating 'I was sociable today wasn't I Mum?' so many times I began to wish I hadn't asked him!) and while he would rather have been at home/stayed in his tent, he did in fact come out, mix and even tried to join in a very strange game of volleyball one evening. I am proud of him for that! I often long for the little Charlie.. the one who was indiscriminately sociable, the one who sat on strangers and garbled at them incomprehensibly, because he was relaxed back then. However the young man he is becoming isn't like that any more, he's the awkward one the lanky Rainman character and it's far harder for him now.

The highlight of the week for Charlie was not the socializing of course, but Drayton Manor park. he who is so anxious about life, is an adrenaline junkie! The higher the ~~more likely to make me vomit~~ the better! Luckily we went on a quiet day, minimal queuing and had a great time.
Abby ran the whole length of the zoo screaming, as she was chased by a very determined wasp...:)

For me, Specialkids camping is about being with those who just 'Get it' Get that while we all have very different children, we all have futures we didn't sign up for! Lives with Statements, and transport issues, hospital appointments, DLA forms, worries, fears, unexpected miracles... people who just, for a heap of different reasons, GET IT.

For me this year it was slightly different. I have struggled for a long time with so many different issues, none of which are actually anything to do with Charlie's needs. Work, the children, Lucy's eating (or not) Zach's behaviour, and at the heart of it, my place in the centre of the family.

More often than not I have felt like the buffer against which everyone else falls, or the wall they beat their head on, or the referee in a particularly nasty match. I have considered walking away from it all at times, and because of this I think I was not quite 'myself' at camp.. more subdued and less chatty.
I'm a very private person (despite my blog) and rarely show how I feel because I find it hard both to trust other people with my feelings and also because I don't wish to burden anyone else.. my problems are mine.

But there were a group of friends at camp this year who comforted me when I did need it the most..and to those, thank you. It matters more than I can say. And it helped a lot. And I will be ok...

There was also a teenager, currently giving her mum the typical teenage stuff that makes mothers feel abused and invisible, who came up to me quietly one afternoon with a hug to ask if I was ok, because her sharp eyes had noticed me walking away one day.. there was I worrying about HER mum and there she was worrying about me..

I guess we are a special group indeed...

Special kids 09... fabulous...

Photo and video editing at www.OneTrueMedia.com

Come and see..

2009-07-27T12:46:00.000-07:00

Some pics of my developing garden!!

It's hard to believe that at was only four months ago it was a gravel pit with a broken trampoline! There is lots to do yet..next year we hope to grow runners round some arches so that the beans dangle down, also cucumbers etc.. for now some toms, runners a little pot of peppers and a pot of 'cherubs' (family name for Aubergines... just ask Lucy why!)

I find it soothing to sit and look at my pots, or to watch the goldfish..

Oh and the goldfish appear to be, um, happy. Happy to the point that after a month of hassling what I now guess was the female of the bunch, we appear to have hundreds of goldfish fry swimming around. At first I assumed they were just some weird little water creatures.. they were too minute to be fish. But as each day grows they look more fishy.. their little fins are now visible and having chatted to the chap at the garden centre.. yup we have babies:)
How awesome is THAT?!!!!! Apparently most of them will be eaten by their parents (us parents of teens can appreciate THAT!!!) but a few may survive and then we'll rehome if necessary as the pond can only keep a handful. I am delighted that we have obviously got the conditions right enough for breeding to take place!

On the family and work issues,I have decided to try and take a step back. From everything.

I can't make my wayward teens into responsible adults..I can only be supporting and helpful and not too soft..and hope for the best. I can't leave my job unless I can find another..and the hours suit. I WANT to be doing something different entirely but until I have a room free in my house it is impossible..

so I'll wait.

Anyway I'm a bit more cheerful!

Some of that is down to my good friend Sandy who offered a visit on the spur of the moment!Having dispatched my girls to Granny on the train (for the first time ever and they had a GREAT time) I took off to Sandy's with the boys in tow.. and relaxed.

It was the longest time I had spent with Zach for a while.. and it was good. Nice to relax in the car and let him blast the music on the journey, great to watch him skate into the distance with Jess, fun to watch him tease and play with Heather.. just nice to see, and remember that there is a nice kid in there really!
Charlie was, Charlie-ish:) He walked the further he has ever gone when we took a seaside stroll, and walked well and did not complain, but since we got back he has been exhausted and has needed NOT to walk anywhere so maybe we overdid it a tad! He seems to need a lot more 'zoned out' time these days but it does him good to have to be social now and then!

Did me good too tho I'm not sure that getting thro a 3 litre box of wine between Sandy and myself in two days WAS a good thing...! Good for the soul.. possibly not the liver!

Then again we ARE in training for camping next week! YAHOOOOOOOOOOOOOOOOOOOO and the weather is looking better!!

Off to do a little more training....

Unbeliveably fed up

2009-07-23T16:35:00.000-07:00

OK after all my whines in the last months perhaps it's not that unbelievable.. rather wish it was.

Somewhere, somehow I have gone badly badly wrong with my kids.
I don't know how or why.. we have a boringly average home and a pretty typical family but somehow it's all far harder than I ever imagined.

I can't even post on facebook because it would upset dear family members who don't need my stress to add to theirs but it has to come out somewhere and here is a relatively safe place.. as far as I know.

I LOVE my children.. all I want is for them to be safe, happy and to grow up into reasonably sensible adults. Charlie has his challenges..and none of his own making. The others..well I expected some teen crap..who doesn't but some is easier to deal with others..
I'm still struggling with some of Lucy's issues..and probably have unwittingly made things worse at times.. knowing too much is dangerous. I'm trying really hard to get the fine line between butting in and not butting in enough.. impossible it seems! I'm probably not letting Trev In enough..trying to deal with everything myself.. but I can't help my nature there.

Today I discovered a breach of trust so big I'm not sure how to overcome it , or whether I even should. Zach has always been irresponsible to put it lightly and we have tried our damnest to keep him close, to guide him and to try and make life ok.
Maybe that IS our biggest mistake.. he has gotten away with far too much in the attempt to smooth the path for him and for the family when maybe what he needs is an old fashioned kick up the backside.

We've had police round now..several times..for fighting, for stupid behaviour with his moped (currently locked away from him) But the lies, the deceit and most of all his total lack of respect and decency towards people who have always managed to care for him regardless.. well tonight it has been one step too far. I'm not even going to post why, because the people here who know him also know he does have a good side..he cares for some people and can be gentle and kind... but tonight that's not enough. I don't know how to help him see that his behaviour has to change .

On top of that of course I have my dear Nanna who was beaten and robbed in her own home..92 years old and some scum of the earth walked in and took all her life savings..as sadly she had kept them in cash:(

School has finished, but on a sour note with a situation in September I'm not sure I can face ... I need a change but have no option but to stay unless I can find something better, if I don't work we don't pay the bills.

I'm bone tired. Not depressed.. rather overwhelmed with bad things flying at me from all sides.. singly it would be tough, together it feels too much. I saw somewhere the line,

'there isn't a shovel big enough for this week's shit' ..that sums it up really.

I'm hanging onto the good things to come.. Camping with Specialkids, with friends who don't judge (I hope) even if they don't have children who make them sad. We all have challenges there..that's why we came together but I guess we all have other difficulties too which aren't related to our children's disabilities and I am sooo looking forward to being with those people... both the ones and I know and love, and the ones I don't know and love yet but will!

Last year I met a 'new' family there and gained a real friend... and it's the knowledge that we will all be together soon that is keeping me hanging on ...

Tomorrow is another day and maybe I'll just have to go get a BIG shovel....!!!!

I'm.... still.....

2009-07-13T14:40:00.000-07:00

Alive....

Just....

Blogging will resume around the time that school STOPS!

I'm a tad tired.. in fact for the first time ever I was awoken by the doorbell this morning.. it was the taxi for Charlie. Damn shame we were ALL still asleep...

Only 2 hours past my alarm! Abby and Zach have finished school so there was no Abby to wake me (Zach might notice if I was not seen for a few days....he only comes upstairs for showers!). Lucy slept. Charlie slept. I slept.

Oh and I pick up a colleague which meant she was at the roadside when I woke up.. I dashed out in my pjs to get her before ringing school to say we would be VERY late!

Yeah I'm tired.

4 more get-ups to go....!!

I'm backkkkkkk

2009-06-26T14:57:00.000-07:00

Oh yeah... and what's more I'm almost whole and perfect *cough*

I am not sporting the bruises I had last year from our class residential trip, for which I am very grateful. I do have a sore scalp from the hair pulls but I can live with that..it doesn't show!

Last year it rained a lot. This year was much sunnier which made it FAR easier to ~~wear the little sods out~~ get everyone outside. The grounds of Yenworthy (outdoor activity centre in Devon) are beautiful..down a steep hill, with a slide, a pond, space to run and relax...

We arrived after a fairly hairy journey. I was driving my own car because I needed to come back earlier than the others. My colleague Amber was also driving HER own car to bring bags and we tailed each other all the way... fine except Amber was in a Saab and I'm in a 1 lt Nissan Micra... and she gets lost a lot! There were a few hair raising 'last second' turn offs and a roadside wait after she had gone off one junction too early, but we made it to...

PORLOCK HILL.

For those who have never been there, Porlock hill is a ~~brown trouser experience~~ one of the steepest windiest hills in Britain. Basically you go up it in first gear and pray to God that you don't have to stop for ANY reason whatsoever. It goes on for miles and brings you out level with the clouds. It is TERRIFYING.

I am proud to announce that I made it (without needing a change of clothing..just a pounding heart!) and that *I* wasn't the Saab driver who went on the wrong side of the road in the process....:)

Anyway we got there, unloaded the kids and took them into the grounds to unwind. For two of the boys this was a first time, and so they hadn't yet realised that they werne't going home again..however the others did and this is when it started...

Ok Yenworthy are now a few slates missing from the outside of their building, there are a few bits of wall missing and the yr 6 mainstream kids on THEIR residential won't mess with women who can restrain.....:)

Oh and three of our boys made it straight down the slopes INTO the pond. I can now confirm thar pondweed IS edible..or at least not poisonous... as the child who ate rather a lot of it is still alive and well.

The Piedro boots took all week to dry out tho and still have weed in the laces!

We had a typical week. Plenty of 'incidents' a fair few chunks of hair missing, and lots of laughs for all the wrong reasons. VERY little sleep. Lots of Poo (kids not ours and usually in the worst times and places... (sorry Julia about the skid marks on your duvet... )

The mainstream school who were there at the same time got a quick PSHE lesson when one of our young men stripped with amazing speed at dinner.....

Highlights...:

Zip wires.... here I go...

Beach day! Love surfing, love seeing the children free in the waves...

Rockpooling.. this year a success in sunshine and we found big crabs, a jelly fish and some weird fish. ..on and one of the kids being chased thro the water by the instructor's dog (harmless and amusing to watch.. yes I'm a meany!)

Pushing Amber back up the hill in an all terrain wheelchair after her dodgy knee 'went' and laughing so hard I didn't think we'd make it...

Glad however to be home to my own bed and sleep!!

Dad

2009-06-13T03:52:00.001-07:00

Some times in our house we forget how important we really are to each other. We all lead hectic lives sometimes passing each other rather than spending time together. Some weeks Sunday dinner is the only time that we are all together for any length of time.

Mostly that's fine.. I can't imagine being cooped up in a room with four teenagers (or nearly, as Charlie likes to point out, now that he is 12) for too long or too often unless I have been given a sedative first.. their ability to drive us, and each other insane is far greater than even the the space their ever growing bodies fill.

Trev mostly works and sleeps and fixes things. He finds their teen ~~disgusting revolting slum like habits~~ untidiness, difficult to bear at times and does tend to nag. The kids mostly roll their eyes in that 'Not AGAIN' way that they all have developed and rarely appreciate his skills and quiet affection unless Zach needs his bike tyres mending AGAIN, or Abby needs a lift somewhere NOW.

But for all that he is the joist in the family for want of a better word.. he's the solid centre without which we couldn't function, I just think sometimes it's nice to capture that.

These pics were both taken this week:

Lucy, having fallen asleep on her Dad watching a film..

And Zach needs reminding who's boss now and again...

Believe or not this is fun. (Ignore the bleeding gash on Trev's head..work related!)

There appears to be this 'macho' thing going on in the house. It consists of Zach annoying Trev in order to be chased and challenged.

Generally Trev wins hands down (we'll gloss over the broken knuckle of 5 months ago that never was properly treated and consequently is now permanently damaged because Trev wouldn't go get it checked after the wrestling match they had!) Trev IS stronger. For now.

But Zach loves it. The 5 second head start before his father pins him down and tortures him a little...:)

It's what being a good Dad is really about I guess.. being the person each child needs their dad to be!

And breathe...

2009-06-11T12:21:00.000-07:00

So far this week has been better.. (thank GOD for that I hear you cry..)

So far:

Lucy is eating better..more normally and is happier I think. I'm not thinking the problem has magically vanished.. but we came to a decision ..after many tears on both sides, that the best way to help Lucy for now was for us to take life back a bit...

The anorexia blogs have gone from Lucy's blog links.. and her computer time has been limited to 30 minutes a day. Nothing feeds an obsession like the internet (said like the obsessive researcher I am) so I decided that for a while her time will be strictly limited (not for homework but for blogging time) I'm not stopping her blog.. writing is and has always been an essential thing for Lucy.

I'm pretty sure that whatever career she chooses in life, she will always be a compulsive writer. She was writing stories from the moment she could hold a pencil and some of her work these days is very good indeed. She has also..like me.. I(I have kept a written steam book since I was 12!)always felt the need to write to let off steam.

With that in mind, and her being a 21st century child, I have not restricted her writing, I can't gag her in that way, but her time is limited.

As is her social life. Carterton has awful awful problems with teenage drinking and Lucy;s group are no exception. Rather than put her in the position where she can't refuse..doesn't WANT to refuse, I have said no more sleepovers for a while.Let's get that under control too. I'm happy to be the mean cow excuse.. you know the 'My mum is such a mean cow she won't let me...'

Lucy said she felt happier when grounded....

We are taking it one day at a time...

However I do feel more positive which is a good feeling..

Lots more to update but too tired.. been gruesomely unwell this week and my body is catching up...

Why.

2009-06-01T14:08:00.000-07:00

I think that maybe I'm going to fall apart . Slowly. Piece by piece a small part of me cracks and disintegrates with every denial.

I hoped that an incentive might help. In the cold light of day that is absurd even to me, to think that an eating disorder can be helped with a bribe.. but I thought maybe the promise of money( new clothes) would help with self image.

Trev thinks he heard her vomiting yesterday. I'm pretty damn sure she was tonight. I don't know what she had for lunch..if anything but I'm pretty sure whatever she ate at Alice's tonight won't be staying there , if it hasn't already gone.

She's breaking my heart.

I never expected it to be easy having four children, but it has been..relatively speaking. Charlie's disability, Zach's pretty rocky road towards adulthood and even Abby's early years... none of it easy and yet we have learned, coped, got better at it (mostly) and maintained optimism that our family , is, on the whole, a pretty ordinary one.

But this, this is something I don't know how to cope with. I remember many years ago saying I could cope with most things but not drugs and eating disorders. Now we are here and I'm struggling .

How do I help her? How do I help repair a self image that is full of self loathing.? She won't talk to me, she mistrusts me. Denial is paramount. The easiest path would be to try and trust her, to ignore the evidence in front of me but I don't think that NOT helping her would make her happy even tho she just wants to be left alone.

I'm wondering whether it would help to talk to her friend..I'm sure she knows. Maybe she will just protect Lucy..but just maybe, if she loves Lucy, she will try and help Lucy to accept the need for help.

And how..just how, do I keep functioning.. someone please tell me because I really don't know.

sunny day

2009-05-29T14:54:00.000-07:00

Nope no pics.. well I could blog my own sunburn but that would hardly be an attractive feature would it?!?!!??!!?

Today has felt nice.. relaxed. I acquired my own sunburn while sat by our lovely pond in the sun scooping out blanket weed with the aid of a runner bean cane... it is oddly therapeutic!! I introduced Lucy into this mysterious art and she too found it quite compulsive and satisfying..

Sometimes I think we are more alike than we look!

Lucy seemed more relaxed today which is nice. I know she thinks I'm a nut job.. well doh I am... every thing I say is taken with large spoonful of mistrust... but I wish there was a way for me to truly explain that I'm a pain in the bum only because I love her so much and I am so scared of losing her ..mentally as much as physically. I can't see inside her head but I can guess pretty much because my own head isn't/wasn't too different... I was very like Lucy once, only not as pretty or bright! She has gone for a sleepover tonight ..hope she has fun and that they are sensible!!

Zach has also gone tonight to his friends. I am loosening the curfew with him a little too as on the whole he has obeyed pretty much. I have just forked out for him to go to the 'Big Green Gathering' in July.. 5 days camping on an eco/folk/hippy fest with his friend and friend's hippy Dad!! Apparently it is a very relaxed and pleasant event and I'm rather wishing I could go too!!!!

Abby is setting fire to things in a friend's garden ....

Charlie is still glued to Wikipedia and is monologuing me with info as I type....

I'm enjoying the peace but it always feels wrong when the family isn't all here. You'd think I'd be used to it by now but I am not. I like having them all around. Safety in numbers!!

2009-05-28T15:23:00.000-07:00

It's 11.30 pm at night and my daughter is outside skipping in the garden because said that she couldn't go on the Wii fit at this time of night. We went to Legoland today..ate sandwiches, had an icecream on the way home and a light supper. Not a big deal.

She doesn't have an eating disorder she says. No. In tears because she can't exercise at nearly midnight, but that's normal...

I saw my GP this week ..discussed this with her. She was very nice and also very sympathetic. There isn't much we can DO to help until she accepts that she has a problem.. but the GP wants to help me cope in the meantime.

I want normal. For my daughter. That's all.

Whoop Whoop

2009-05-20T14:05:00.000-07:00

See my sidebar?? (Thanks Robyn!!)

New Moon New Moon New moon.......!!!

Really paddling right now

2009-05-17T04:47:00.000-07:00

This week hasn't been one of the best ever. I'll start with the good stuff thought because that's a ice way to look at the blog..pretty pictures help don't you think?!

The garden turf arrived Friday and now we have a green garden! It looks amazingly fake at the moment and ~~anyone who steps on it is DEAD~~ we are being careful to avoid walking on it until it has bedded in. Religious watering takes place twice a day and we are simply standing and admiring it! Obviously the garden there looks bland and blank but give me time and lots of pots (I love pots) and by next summer I think it will start to be a real place to relax. I am very proud of Trev because he has done this single handedly.. I hate to think how much it would have cost else!

That's the good part of the week.

The rest has been, frankly, awful.

Zach is floundering under the realisation that not doing any revision for GCSEs is a BAD thing.

Heaven knows we have tried ~~bribery~~ encouragement , nagging, support with revision.. and he has just not put any effort in. Then he tried a maths paper(we made him because we discovered he had bunked off the last revision session) and he panicked when he found he couldn't do it. Much yelling and banging and tears ensued.

Abby is going to help him in the short time he has left. Unfortunately as per the usual crap system he has all his most difficult exams one after another with no time between to revise.

I guess we can only let him do his own way.. and hope for the best.

On and he had ANOTHER police warning.. this time for being caught giving 'backies' on his Moped despite us warning him. His moped is locked away for a month and if it happens again it goes on ebay.

Abby meanwhile is working extremely hard as she has AS level exams. She just kind of gets on with it. She seems a lot more relaxed than she did at the beginning of her A level year when she found chemistry extremely hard. Now it has 'clicked' and hopefully the AS exam will go smoothly!

Lucy also has some GCSE module exams coming up. She works very hard in all subjects and is a student who is expected to shine and bring school great glory..

Which brings me onto the worst of the worst.. and for which I hold school partly responsible and myself the rest. I discovered this week that, as I have suspected for some time, Lucy has developed an eating disorder. The signs have been there for some time, but she has been able to conceal the worst of it because of course I am not with her every moment of the day.

I can't begin to describe how it feels to find your precious beautiful daughter has such a poor self image that starving purging, binging results. Anyone who knows my beautiful girl..and she is beautiful inside and out, could tell her how far from 'fat' she is..but that is how she sees herself. The pressures have come from all angles, from school, expecting her to be perfect, from herself.. comparing herself I think to Abby's body shape which is simply different..not better or worse, and much as I hate to think it, from myself. I have often commented on Lucy's appalling eating habits.. one day eating next to nothing, next day stuffing with rubbish, but I had no idea it was more than careless teenage eating. I have way too many hang ups about my own shape and size but I really didn't have any idea it had spilled over to Lucy..and it feels awful.

The worst is I suspected, but discovered it on a fluke.. I stumbled across her blog while actually trying to re-find a website I had visited and lost track of.. internet history is a powerful tool. Now I don't suppose she will trust me not to read it in future, and I can't trust her not to continue making herself sick. I don't really know where to go from here. I can't force counseling on her but I am absolutely terrified that the cycle of self abuse has only just begun.

Feeling very very hopeless right now.

We have a pond!

2009-05-12T13:07:00.000-07:00

And the turf arrives on Friday.

Ok it needs more plants ( we need a lot more plants but that will take time!) and of course we can only do HALF the garden..there is no point turfing the side that the builders will, at some stage, trash doing the shower room..

But so far we have.. a pond, pump and filter, some marginal plants and some bamboo , 6 goldfish and a handful of wriggly tadpoles courtesy of a friend... also, to my delight, my Gran's water lilies which have been in a big tub since I inherited them 3 years ago. My Gran had a pond and I'm sure she will know somehow, that her lilies are where they should be now!

Oh and Portia is going to have a nervous breakdown/get very wet trying to get to the goldfish which have already realised that actually she just can't reach:)

Now I want flowers and sunshine...!

Cats and art work

2009-05-07T14:19:00.000-07:00

Do not mix.

Observe...

This is Lucy working. Lucy is doing Btec Art (4 GCSEs worth) and her work load is heavy.. especially amongst all the rest of her subjects. Ergo Lucy spends a lot of time on her art work.

Currently she is doing a case study on Magritte, analysing pieces of work and having to reproduce some !

Then Morph appears. he DEMANDS luuurve. You don't say no to Morphy because when you do , this happens... he is quite prepared to silence his critics...

However eventually he is prepared to settle for being under the artwork:)

We are sailing...

2009-04-27T14:45:00.000-07:00

Yep, today I went sailing!

Really.

Farmoor reservoir.

Our class teacher is also a sailing instructor and our school regularly takes groups of children sailing there..the more able and the less, alike.

Our class are physically able but behaviourally unpredictable to say the least. One can never be sure that whilst trying to steer a sailing dingy (even the unsinkable variety..or so they say) that one won't be grabbed, punched, pushed off, hair pulled... getting the picture???

I am not confident in a boat. I hate unbalanced motion due to my own poor balance, and I do not like cold and wet. Ergo sailing on a VERY cold wet day is not my idea of fun. Coupled with a snotty cold already springing to life and you have one damp grumpy Julie.

Today the weather did this: Pretty much constantly. Most of us don't have wetsuits but rather a collection of rain coats, Ron Hill trackies (yes really!) and old trainers for getting wet in.

We got drenched. Frozen.

However we also got all seven children onto the sailing boats, no mean feat and we managed to sail. Success indeed.

There were a few tantrums along the way from cold tired wet and generally grumpy people (and not just the staff) but overall a good day.

I shared a dingy with my favourite team mate and we took aboard a young man who is known for some very challenging behaviour. let's just say I was glad I had my hood up when he launched for my head ! He was NOT keen to get on/in but once on the move he actually relaxed.

Being the son of a minister he often sings snippets of hymns tho he has no useful language of his own (only echolalia) and we managed 'Michael row the boat ashore' and a little of the hymn that ends 'for those in peril on the sea'..... the content amused us and the singing seemed to actually relax our young man!

sometimes my upbringing shows...!

Now to bed with a hot water bottle and some paracetamol....

Spitting tacks

2009-04-23T13:40:00.000-07:00

Nails, etc etc.

I am so angry. Really steamingly hopping MAD.

Why?

I have just been to that wonderful occasion known as Parent's evening. Lucy's this time, and I am so angry I have steam coming out of my ears.

You might ask why. Surely Lucy, who has always been a golden girl as far as school is concerned, hasn't fallen off the educational wagon, so to speak? No she hasn't. But there WAS a problem tonight and the way the teachers , collectively, approached tonight has left me reeling in horror with our educational system.

As I type, Lucy us probably still crying. I have held and hugged and loved and encouraged her, but she feels a failure. WHY? Because ONE teacher told her that she was not doing as well as she should be and why wasn't she getting the A grade she was last year.

Ok that doesn't sound soo bad does it? Of course it doesn't. But Lucy has had every teacher tonight telling her that she is an A grade student and that she has to maintain her standards and basically be frigging perfect at everything. Furthermore each teacher feels that their subject is the ONLY subject that matters therefore all her time should be devoted to it.

How much pressure so we want our children under?? She's fifteen and doing GCSEs , she's not running for presidency of the USA. She doesn't deserve or need such pressure when she IS working her best. This particular teacher even had the nerve to use bulimia as an analogy for how to revise (little and often not in big chunks or you puke it all up) How sensible is that a thing to say to a sensitive teenager. Why not tell Lucy that while she is being academically perfect she should be physically perfect too and have the best clothes too else she is worthless.

Can you tell I'm cross?

I adore my children for WHO THEY ARE..not the grades on a piece of paper (tho Zach if you read this , REVISION is GOOD!!). I am appalled at the system that appears to be simply pushing children to paper success at the very real risk of pushing children into depression and anxiety .

The fact I failed biology (did it later at Uni and was good at it then!) and chemistry AND physics LOL doesn't seem to have cheered Lucy any... hope she doesn't think she'd going to be like me!

Ok rant over I'm calming now. But I am sad. Lucy , who is able and hard working and a truly lovely girl as well, does NOT need to feel a failure because she has a glitch in her science work.. we don't value our children by their grades and I HATE to see her unhappy because of an off the cuff remark by a teacher. I am proud of my girl.

Incidentally her RE teacher's comments mattered far more to me. Apart from the lovely part where she said Lucy was her most outstanding pupil (and boy Lucy needed to hear that) she also said that they had been tackling many sensitive subjects.. abortion for disability, euthanasia.. and that Lucy had spoken on these subjects with a sensitivity and thoughtfulness that none of the other students could match. Her teacher said it was clear that Lucy had some sort of understanding from outside of the classroom, and when I said that Lucy knew several children with degenerative conditions because of her brother's disability, the teacher said that Lucy's compassion was very clear.

I am PROUD of my girl. But I hate the system that puts so much pressure on her....

My own personal demon

2009-04-20T13:06:00.000-07:00

is back. No not the demon drink ... not quite that bad yet:)

I thought it was gone for good I really did, but on reflection I think it has just been kept at bay by a medication I was on for other reasons... yah I am positively rattling these days.

I'm fed up with it. Really. I am an average 4o-something. I do drink, I don't smoke, I'm of average size and I'm in quite an active job. So why am I falling apart bit by bit, and why can't the doctors find out what the heck is causing it??

3 years ago I fell ill and something went screwy with my neurological system..my balance went my left side was weak. It recovered slowly leaving me slightly dodgy on one side. Then I started having the odd repeat episode of loss of balance and weakness..one side. Off I trotted for an MRI.. normal. My brain is normal! So there is no problem right?????

Successfully ignoring the regular but brief return of the wobbles, as the kids call it, life went on. Then the Trigeminal neuralgia hit. Not so subtle this one.. more like a sudden nuclear attack on the facial nerve. Known as the suicide disease for a bloody good reason. The pain was out of this world.

I lost a couple of teeth in the process of diagnosing the problem as NOT being my teeth but the nerve. The dentist is still riddled with guilt, but I don't hold any grudge..it's very rare and bad luck and I feel very lucky that my own GP was able to correctly diagnose before I even got as far as the consultant. After a couple of months of horrendous pain the right medication soon started to take effect and barring being spaced out a lot of the time, life once again returned to normal.

I'll pass over the internal problems/gut probs I'm having.. enough to say I'm waiting to have fairly revolting exploration of my insides soon!

I've been on a lot of meds recently. Mostly of the pain killing variety, and I don't like it. I worry about the side effects and what they are doing to me, and the fact that millions of people rely on pain medication every day doesn't reassure me.

When the gut problems started my GP decided to try me on something new and stopped my Gabapentin which I had managed to reduce to a minimal dose.

I didn't notice the effect at first. Then the muscle spasms in my left leg started, insidiously, to creep up on me again, and with them the dreaded insomnia. Four nights straight of being unable to sleep due to spams suggested to me this is not a quick glitch, but it wasn't til two days ago that I realised there was more to come.

Yeah my balance has gone again. I'm swaying in the breeze . A not drunk drunk, getting curious stares in the checkout as I try to keep my balance. My left side is pretty bad and I am struggling to do my daily tasks. Needless to say when we took our class sailing (!!!!) for the first time today, I was left upon the beach to guard the child who could not be persuaded onto the dingy!

The spasms in my leg are pretty awful and sleep is all I want but can't achieve,

And I can't get to see MY doctor til the 28th...!!

I just want to be normal again.. to function without pain and with sleep.

Magic wand anyone?!?!?!!?

I'm getting a pond:)

2009-04-18T11:29:00.000-07:00

Ok not YET. Not today, tho maybe tomorrow if I can persuade Trev to think about the next step of our garden.

Perhaps I should qualify the above statement. At the moment we don't have a GARDEN. The word implies growing things, tranquility, a place to sit in the sunshine. No what we currently have is a yard of builders materials, mess and a GREAT BIG SHED.

Every man needs a shed.. I do not dispute this (tho sometimes wonder WHY the need for one so large ..is it a 'man thing'?) Our old shed was/is on the side of the house. However that will be making way for a badly needed downstairs loo and shower room (yay) hence the need to have a large new shed in our very small garden. The trampoline has finally bitten the dust after many years of happy use and so we have THE SHED.

Between the shed and our back door is now decking..finished yesterday (yay!)..following the line of the shed and up to the conservatory..

Next will be a little pond to rehome my Gran's lily (currently residing in a big tub) some marginal plants and a few goldfish to ~~keep the cats' hunting skills sharp~~ keep me happy!

Finally..we will have turf. Ok a TINY patch of lawn, but nevertheless I need a little bit of greenery. After that we can concentrate on planting seeds and gradually growing some flowers:) I am excited to have even got as far as the decking...

This is yesterday before the decking was finished. Trevor did his best to get Charlie to help but Charlie was more interested in the feel of sawdust in his fingers! Trev managed to get the planks in place and cut and planed without any further 'assistance'!

I shall post pics as the pond gets dug..I'm taking them to remind myself that we CAN achieve small but satisfying things here!!

Meantine I'd better get ready for going back to school tomorrow... sigh!

Oh and while I'm about..

2009-04-09T10:07:00.000-07:00

HAPPY Birthday to Lucy!!

I didn't post this earlier because I was looking for a nice photo of her to put up..and looking on my mac she seems to have a lot of daft-bordering-on-insane pics rather than the 'what a gorgeous girl I have' variety.

Having failed to find that.. here's a picture from her Drama group production last week... yes she WAS doing High School Muscial!

Lucy is the one standing on the right...:)

Happy Birthday to my beautiful 15 year old!

I will survive. I hope.

2009-04-09T02:52:00.000-07:00

This is my car. (Ok not my ACTUAL car but an identical one)

It's nice. It drives well (unlike the Suzuki Jimny which we had to get rid of after 6 weeks cos it was so awful) it feels nice, it's good on fuel and although it is the most basic model with no frills and a tiny engine it shifts it up the motorway no problem.

It is also intact.

Today I am taking Abby out in it for the first time.. her driving that is. She has had three lessons with an instructor who feels it's time.

I think it has to be me, as I'm pretty sure that the father/daughter relationship won't survive Trev teaching Abby to drive. I'd swear to it in fact (some days they barely make it through tea time!!)

Charlie will have to come with us as , well I can't exactly leave him home alone, and Zach is ostensibly out job hunting and said NO WAY was he getting in the car too... (oh he of little faith!)

We NEED to make it to the bank as Abby owes me megabucks for buying her Reading festival tickets last night, and we'd LIKE to make it to Oxford as Abby has a top to change and I'D like to make it to any hairdressers available to book Charlie in for a pruning.

In case I'm never heard of again... it's been a fun life!

still alive

2009-03-23T13:32:00.000-07:00

Barely. I haven't had too great a time these past 10 days.

Frankly I'm tired of being Mum this week:

1) Drunk nearly15 yr olds. Lucy seems to have a yearly wish to have herself removed from society. She's going to have grey hair by the time she is allowed out again, and as it's costing me £75 to have her lost phone replaced (it would be much more expensive to finish the contract or I'd do that) she won't be getting anything for her birthday either. I'm gut wrenchingly disappointed in her behaviour, which could have placed her in serious danger.I can't seem to find a way to get through to her how dangerous and stupid she has been and it frightens me.

2) Then we have Zach..nearly got himself into trouble again this weekend scrapping. He only wins back browny points for, when phoned, fetching his drunk sister and nearly managing to carry her home. He's washing he kitchen floor as I type because he needs petrol money for his Moped. We are looking for jobs, but there isn 't much around at the moment here so in the meantime he will have to really earn it from us!

3) Charlie brought home nits. Think about his afro hair and pity me.. (and him... pretty damn painful having me attack him every morning with the nitty gritty comb!)

4) Abby reckons she gets this week's halo for not causing me any stress!!

Work is bearable. Just. Pretty hard times with the children at the moment and the atmosphere amongst the staff has become increasingly stressed in reaction. I'm not sure what the solution is there but it's not much fun for anyone. I feel like a coiled spring that could be set off by one wrong word at the wrong moment... and I really don't enjoy feeling this way.

I did have a LOVELY night away saturday when I escaped to beautiful Wales with a friend. We set off saturday morning , arrived lunchtime at our (other) friend's house where we relaxed and played with the children (well once a certain young lady had stopped telling us to go away 'all gone' ...) and then went to the local for a meal. Steak with a cheesey top and mushrooms..YUM.

I haven't walked back from a pub along SUCH a dark country road, for years and years. It was fun. Slept really well and woke to the sound of a fairy princess bed canopy dropping onto my friend's head (and eye...ouch!) in the room we were sharing!

Unfortunately we had to return home Sunday...!

I'm sure my current miserable mood will pass. Really. It's not really me to be so blooming miserable!

I'm back to the docs on Wednesday re my horrible internal works pain..still alive and hurting. Probably isn't helping my lack of happy factor!!!

If I go to sleep will all my children be over 25 when I wake up??? Please???

We made it..

2009-03-14T12:03:00.000-07:00

To Zach's 16th birthday!

Him intact, my sanity nearly so! OK fairly nearly so.

Zach is a wild ride.. he isn't your average every day run of the mill kid. Oh no. he's the guy with the skates strapped on, or the guitar on his back (or both) He's creative, sometimes angry often gorgeously loving. Hell of a boy.

Today he went to take his CBT basic motorcycle training, and, having passed it, is now the proud owner of a nifty fifty. One black Sym Jet scooter.

I watched him disappear down the road on it and all the mothering, all the sheer lioness instincts I possess screamed at me to run and take him off that bike, make him safe, keep him mine a little longer.

But I can't and I have to enjoy his independence with him.

Happy birthday wild boy!

Nothing much to say so sharing pics

2009-03-08T11:19:00.000-07:00

This weekend has been one of those faceless ones that pass without you even noticing. Charlie has coughed through it, Abby has worked through it. Lucy has drama'd (is that a word?) through it.

With Charlie's drama club production done and dusted the focus is now well and truly on the seniors. They are doing High School Musical and it's pretty work intensive. How ANYONE can take on a bunch of teens and mold them into a cohesive bunch of performers is beyond me... I can't even get my own kids to empty the dishwasher without complaint!

Lucy is in London today, not rehearsing but enjoying music and dance workshops. Last year she had a fantastic time, so hoping today is the same. She had to be up at 6am this morning which is a miracle in itself!

Zach is revising this weekend. Allegedly. he has Module 9 GCSE exam tomorrow and I hope he is prepared. You can see he is revising hard: Zach has a new girlfriend. She is away at Boarding school so he is ~~spending hours on the phone~~ concentrating hard on his revision. Sigh. I'm glad he's happy but I REALLY want him to do himself justice in his exams too!

It's almost impossible to get through to him just how important it is to get those C grades. I'm not nagging him t

o reach for A* grades just to ensure that those vital ones, the Maths, English and a Science are in the bag, so to speak

Ho Hum...

Abby has worked all weekend

. She really does work hard. She studies all week, goes out Fri and Sat nights, and works Sundays at the local garden centre. Recently she has been offered lots of Saturdays too which is good as she is saving for her own driving lessons (we can't afford those). She is also saving to go to... drum roll.. Magaluf. She and a couple of friends (girls) have booked a week in Spain.

I am ~~absolutely terrified~~ proud of her independence!

Today of course is Sunday and the one day we absolutely always eat together. Dinner would have been ready earlier but I had a problem with the dining table. I started to lay the table and was distracted by Charlie calling me from the other room and when I returned there was someone THERE who could smell the chicken... I would like to point out that I DID rewash the dishes and table after I took this pic...

Bit of a week so far

2009-03-05T08:53:00.000-08:00

No pictures this week I'm too tired!
Not a good week, and this is my blog so I can whine so there!

Charlie is still ill. This is really bugging me now. Considering it started before half term and we had him very poorly over the holiday, off most of the first week back and now still off this week it's not great.

Turns out the doctor who saw him for his amazing rash, missed the rather important fact that he STILL has a chest infection. We all thought it rather odd that his cough was miraculously now 'just in his throat' considering you can hear him wheeze , but hey ho I'm not a doctor. I'm wonderingly slightly where that doc got her degree... from Walmart maybe?

Anyway he is now on some more antibiotics which so far aren't making him swell up, turn purple or any other such events and HOPEFULLY he will perk up. He is thin as a rail and very weak which is no surprise.

Childcare has been an issue. I have been off quite a bit over the last few weeks first for myself, then for Charlie and I really can't afford any more time off. Not having a relative within 100 miles ~~is a blessing~~ is a real shame, and more so at times like this! So far this week I have juggled him around myself, one good friend, Abby, (please don't tell the LEA !!) and tomorrow Daddy will stay home. Can I just say I REALLY hope he's well enough for school next week?!!!

Next whine. Not too many details but for those who know how ~~bloody awful~~ tricky Zach has been in the past, we revisited the worst of it yesterday, resulting in bruised emotions and well, bruises. I handled it very badly because after a good 18 months of such improved behaviour the trashing took me by surprise and I just wasn't mentally ready for it. No long term damage done to property or persons but it has left me for one, feeling shaken and sad, and concerned that in an adult sized body these days, he is going to lose it and end up arrested.
I feel that I dropped the ball with him because with his behaviour much improved I decided to trust him to keep on top of school and life and to relax a bit with him.
I am now firmly UNrelaxed....

The wheelchair we bought for Charlie IS too big and is going on ebay:( I am gutted as it is an absolutely fabulous chair but it's just too big for him. Damn. Still whatever it sells for (and as long as I get what I paid that's fine) will go into the pot where I'm saving for a decent one for him. Sigh..

On the plus side I did manage a haircut this week... it gets shorter every time, and I actually like it!
That may be a first.... !

2009-02-28T00:13:00.000-08:00

This is pretty much how I was woken up this morning.

Someone tell my cats that 6.15 am on a Saturday is NOT A LIE-IN!

It's the silly things that get you most..

2009-02-27T14:07:00.000-08:00

I have just returned from Charlie's drama group production.

I should probably explain. Charlie goes to a local theatre group called ABDABS in Witney. I can't praise the team highly enough. They are dedicated fun people who have welcomed Charlie with open arms from day one, supported him and encouraged him..they are great.

Charlie is in the juniors. Technically he could be a senior (as Lucy is..she loves it too) but he couldn't cope with it yet. He is not the oldest in the juniors..there are a handful of yr 7 children, but he is the biggest by some margin (lets say a foot taller than most!!)

This production is 'Dracula the Musical' Well written well produced and funny. Charlie of course is 'chorus line' material but they always find him at least one line and he is VERY proud.

He can't act of course..he has the classic monotone voice of autism, and he can't look in the right direction let alone dance, move at the right time. To an outsider it would be hard to see that he is getting any enjoyment out of it.. but we know he is.

Tonight he was a Zombie and a Policeman. Unfortunately he didn't make it back to the stage for his moment (and one sentence) as a Policeman as no-one helped him in the dressing room to make a quick clothes change. Charlie can't do that himself so was too late!! They assured me tomorrow the helper would help him and to be fair, in a dressing room full of boys any stranger helping out would assume the really big boy there could do it himself. Dad is chaperoning tomorrow so he WILL make his entrance!!

He made a good Zombie. Sadly it was simply his usual tired look..open mouthed and blank faced and stumbling. Always at the back, always a step behind.

We all went to watch tonight, even Zach who abhors theatre, came to watch his little (ha, hardly) brother perform. They all support him which is really lovely.

But *self pitying whine alert* It was so so hard to watch him.

I can get away with it most of the time. To quote my mother 'In the land of the blind the one eyed man is king' In our school, our special school, Charlie is an able child. He can walk he can talk, heck he can even read!. But in the real outside world amongst children from mainstream schools, well he stuck out so badly. His DISability shone tonight. The majority of the children in his production are a lot younger than him. No they aren't extra talented or super gifted, they are ordinary lovely junior aged kids, doing drama club.

Charlie looked like an alien from outer space. Forrest Gump. He looked so different, so out of place so just not able. His hypotonic , dyspraxic movements, his autism..all glowed under those stage lights, and you know, it hurts.

I can get away with it so much of the time where I'm not faced with 'real' kids. But put in front of me like that, I lose my ability to be grateful for the things he CAN do and I just ache for the huge gap between Charlie and his peers.

Charlie sees no gap. I am grateful for that and feel very lucky that his autism blinds him to his differences. He is justly proud of his show tonight.

My Mummy head is too. But my Mummy heart aches and hurts .

Ow and well, Ow!!

2009-02-27T09:35:00.001-08:00

An average day at work?

I have come home today missing a sizeable chunk of the skin from INSIDE my mouth..my lower lip to be precise. I actually had to cut off the flap of skin that was lapping against my teeth...

A child at school who was having a bad moment and needed adults to help him to walk to a calmer place managed to get his hand into my mouth and gouge a chunk out while he was lashing out . Can I just say again..ow! And more ow!

I really hope I can drink my wine without it stinging.....

On the good side, it is a Friday. Tomorrow is a Saturday and I'm off to Wales to see an old old friend. We met when as a young couple, we bought our first house from Jac and her husband. A while later we bumped into each other and discovered we were both pregnant..with our eldest daughters. A year later and our second babies were due and born within 3 days of each other, just like our own birthdays. A friendship blossomed and grew with the subsequent births of our third children!

We suffered the toddler stages together, I can still see the potty success chart on their bathroom wall! One day I said that if I was ever foolish enough to become pregnant again then Jac could come to the birth as she had always wanted to see a baby being born and we both knew how little I'd care once in labour. When I realized I was indeed having a 4th I reminded Jac of this, and when the day came, she was there with me and watched Charlie emerge into the world, a special moment for us both. She was also there when I first learned that Charlie was going to have disabilities.. in short she was always there.

We moved away however we have kept in touch, and infrequent though they are , our get togethers put us right back to where we always were.. no matter how far the distance or the time we are the same as ever. It's great. And tomorrow I'm off for a night and day away to walk and talk and no doubt sink the odd glass or two together. (Who am I kidding.. we'll be legless!)

Watch out Bridgend......:)

Hmmm

2009-02-25T10:04:00.000-08:00

Decisions.

What should I have for tea??

Should Charlie go to school tomorrow?

First is easy.. french bread and taramasalata... yum. Simple. It's Wednesday, my escape night (bingo if you must know!) and 'get your own tea kids' night. So I eat to please myself, and of course Charlie who I cannot reasonably expect to whip himself up a meal!

Second decision is more difficult. REALLY he isn't fit for school. The rash is fading nicely, but he is really weak. Fell asleep traveling in the car with me today..something he NEVER does and he still just wants to lie around. I was more than a tad disturbed to discover this morning, that he has lost half a stone in weight being ill. That seems an awful lot to me. Ok he's tall and thin normally but right now he's tall and VERY thin. Hopefully he'll fatten up again soon!!!!!

Charlie is begging to go to school. or rather, he is repeating over and over. 'It's Thursday tomorrow, I am better by Thursday so I can go to school'. I really don't have the heart to say no..the lack of routine is probably making him more unwell with stress than sending him! He's not swimming tho ..I can just imagine their faces at the pool when my polka dot spotted painfully thin child appears!

We picked up the wheelchair today and to be honest I'm not sure it will be suitable. It is LOVELY. The depth is right for him (he really does have absurdly long legs) but it is too wide. That in itself doesn't matter too much for sitting and being pushed around but it means he can't be very independent in it because it's too wide for him to self propel comfortably. I think we'll tuck it away somewhere for a while and wait and see how he grows over the next 6 months as there is no saying he won't be a fair bit broader eventually! It does mean for now tho, we are no further on having anything decent for him to use. Damn.

My visit to my Gran's grave was lovely..peaceful and somehow touching to see generations of Cledens in plot after plot. All were born and died in Andover and somehow are part of the town's very history..teachers, builders, publicans..priests an array of people who are all my own. There is no room for any more of us in those plots, which is ok by me as I have no intention of being buried, but I think I might like to be scattered amongst their stones!

bunking off school

2009-02-24T22:58:00.000-08:00

Well they don't want us, so I am going to use the day productively.

Charlie and myself are going to Andover for the day where we will meet my Mum, have lunch (somewhere discreet where they can't see Charlie's spots!) and then go to my Gran's grave and lay some flowers. It's about an hour and half's drive away so we don't often get the opportunity.

The other reason for going is that we have been offered a very nice wheelchair for Charlie.

His lovely lightweight Kuschall K4 is too small for him now, and so I put it up on ebay this week.

Some kind person contacted me and said they have been donated a Kushcall Fusion chair that they can't use (they are Red Cross and only use transport type chairs) and were we interested?

I had to check first..it's an active chair and has no push handles but my local Kuschall dealer..conveniently only 10 miles away.. has said we can add some, so well, we'd be foolish to turn it down and I will donate the money we made on the ebay'd chair. It is a little big for him just yet.. adult sized for a man, but as anyone who has seen Charlie recently knows.. he is growing so fast.. he's about an inch shorter than me now, at 11, so I have no doubt that he will be the right size for it soon!!!

Of course it would be nice have the option of being personally fitted for an adusjustable sized lightweight chair but ha, as a 'casual user' Charlie gets offered only the most basic the NHS has to offer, and I'm fed up of the foot rests falling off! So in my mind a second had top-of-the-range Kuschall seems a nice alternative!

And what lovely people to contact me! They said that they have tried various organizations to offer the chair but because of insurance issues no-one will take second hand chairs . The world has gone mad!

Charlie is pleased because the front forks are yellow. He likes yellow....

A plague upon.., well just Charlie really..

2009-02-24T14:26:00.000-08:00

Blogger's guilt. Is there such a condition? I'm sure there is, or will be, listed shortly in some dictionary somewhere. However in my defense, half term has NOT been fun. No not at all.

I anticipated getting up slightly later, letting the kids stay up til they dropped and losing some of them to sleepovers (ok and gaining some too). Well some of that happened, but mostly I was playing nurse to Charlie.

I should have known. Slap me now. Charlie is never ill. really! he just doesn't seem to get coughs and colds, his immune system is superb and he never complains anyway because he has a lowered sensitivity to pain it seems. So, when a few days before half term, he started this hacking cough I should have taken notice., especially when he was sent home on the thursday, an interesting shade of grey and shivering. Turns out he had a temp of 103 then..but had he said a word? No.

Charlie got steadily sicker towards the weekend. By saturday my Braun Thermoscan thermometer was in meltdown.. surely 105 degrees can't be r

eal? Had we ~~not had too many glasses of wine~~ been less experienced parents , we would have driven him to hospital that night, but luckily fans, sponging etc got us through the night and sure enough when we saw the docs the next morning, Charlie had a chest infection and was duly dispensed antibiotics.

Charlie had not had Amoxicillin before.

He won't be having it again either...

Pretty isn't it?? pretty extensive too ..head to toe and all the parts in between absolutely covered in this rash.

The best bit is the GP said he was FINE to go to school with it.

So we tried today.

20 mins with the schoo

l nurse later and we were packing our bags to come home again. Allegedly he also had a temperature still... personally I think the school thermoscan is set a degree higher than it should be but hey ho. We are home again, off tomorrow and I am planning for us both to return on Thursday, hoping that by then the spots will have diminished and I need to go back because I am not being paid as far as I know!

Anyway Charlie could sue a few more days at home. Although he is better than he was, he is weak and limp with a hacking cough , and obviously wiped out, content to lie on the sofa quietly!!

So half term sucked. Royally.

Tonight tho was pancake night in our house. There is only one pancake queen and this is her in action!

(no her eyeballs don't actually roll..it was a bad picture...)

Abby is VERY good at pancake making, they come out perfect every time.

Her dad however hovers..,offering advice (unwanted) until we had the quote of the day...

" Oh Dad you are such a backseat pancake driver!"

He is too.

But we enjoyed the pancakes and ate an obscene amount of them. Charlie lost 4 lb in weight being ill (he can not afford it either) I think I know where they went, looking down at myself.....

An average evening in the Radford household..

2009-02-16T14:41:00.000-08:00

Thought I'd share.

Trev goes to bed early because he has to be up at disgustingly unsociable times (4.30 am tomorrow). Generally that means a 9.30 bedtime and much faffing about to make sure the kids do NOT disturb him. Trust me with 3 teenagers sloping in at all times that isn't as easy as it should be! As I type, Abby is on guitar hero trying to beat Zach's score, Zach is lurking to ~~take the mick~~ encourage her. Lucy is at a sleepover..again... and Charlie is flopping in the conservatory. It is cool out there and it helps his breathing., which as he has a very nasty chest infection, is a good thing.

Charlie is sick. Actually really really unwell. It started over a week ago and I feel awful at not realizing just how poorly he was. You have to understand that Charlie does not get ill. Ever. I can count the times on one hand (since babyhood..he was ill all the time then) that he has been ill.

Really that should have alerted me. Charlie is never ill. But on the very rare times he has been it has ended up with an emergency admission to hospital and usually oxygen and lots of IVs. Ignoring a hacking cough is not a bright idea.

Thursday he was so poorly at school I had to take him home. Friday he perked up a bit with lots of paracetamol.

Saturday he went down hill faster than an olympic skier. By early evening he was burning up and completely out of it. I dug out my trusty Braun thermoscan (the 'in the ear' type) checked it was working properly on myself and on Trev (it was) and then applied it to Charlie and was horrified to watch over the evening as it crept higher and higher until it peaked at OVER 105 degrees. he was firey hot. I stripped and sponged and finally he drifted off into a delirious doze. It was a long scary night. In the morning I whipped him down to the emergency docs where of course they confirmed he does indeed have a nasty chest infection and loaded him with medicine. Thankfully now he is a little perkier though limp and still with that awful cough .

Next time I will assume the warning signs matter...

Anyway back to tonight.

Most families do what in the evening? I don't know..I'm really asking here. Most evenings my older three are either doing homework (the girls) or sloping out to sneak fags with their mates (Zach) or lounging infront of the TV/Wii/Mac.

Tonight, unusually both Abby and Zach have stayed in. And that is where the fun started.

Abby spotted my TENS machine. used for easing my back when it's bad .

It does help a little I think. She asked to try it so Trev obligingly put the pads on her back and switched it on. One setting no 1 she squealed. On 2 she yelled. On 3 she ripped off the pads and said rude things to her father!!

Then she called for Zach to try,

Oh yeah.. Mr 'I'll try anything ' was up for it.

Observe.

Zach

having his hands, feet, and ultimately six pack...

basically

electrocuted.

This is sibling bonding at its best don't you think?!!

Something kinda cool

2009-02-14T09:58:00.000-08:00

Zach is an active kid. He skates, and he also does Mixed Martial Arts training (AKA cage fighting) under the tuition of a friend of mine who just happens to be hell of an MMA fighter . It's all reasonably safe and his trainer is a decent guy. It keeps Zach seriously fit.

So far we have been surprisingly lucky and Zach has never had any serious injuries from his hobbies although he did get a nasty gash in his leg from a crash on the skate ramps with a BMX-er. It took 3 months before he could put a skate boot back on,.

Anyway to give him another way to damage himself he had Projump stilts for Xmas.. those metal leg thingies that make him very tall, slightly creepy looking . He mastered them extremely quickly and has been seen loping down the road.

Anyway to cut a long story short, he was invited to the opening of a new community centre in our town, to be entertainment along with some other stilt guys. I had to ask permission for him to be out of school for this, and to my surprise the head said yes!

Zach did his stuff AND got to meet the Princess Royal.

Kinda cool and I'm hoping I'll be able to get a photo from the local paper soon...

It's a Wednesday (in case you hadn't noticed)

2009-02-11T08:35:00.000-08:00

The snow is melting (yay..had enough now) my new car is fabulous (except for the near skid this morning... note to self, it's still a car not a tank!) and Charlie is SLIGHTLY less obsessed with the weather forecast than he was although he is still hoping for another snow day despite the relentless rain!

All's good right?

Well nearly.

I'm still in a pain. Not an itty bitty , ow let's take a paracetamol type pain, more a 'stop the world I want to get off' type.

I'm on so many medications I don't need to eat..I can breakfast on pills (which incidentally aren't too kind to stomach linings.. I now know that it's best to eat something first!) and the pain continues unabated. The interesting combo so far has pointed in the direction of that unmentionable organ.. the bladder. It seems likely that it has cemented itself to my equally unhappy bowel wall and the two organs are having a wrestling match that would make Hulk Hogan look puny. Hurts to sit, to walk (OMG it hurts to walk) and basically sleep is the only relief. Back to the docs AGAIN friday.. I swear there should be the NHS equivelent of frequent flyer miles, but I for one am not happy about being such a regular visitor!

I swear I must have upset some minor deity up there.. either that or I just have some incredibly dire karma to work off. Grump.

The ONE thing..more than the meds, that is helping me stagger

through the day is this.

These are 'Hothands' and I bought a batch in Florida (don't laugh) last year when my previous m

edical nasty was at its worse. They are really small bags of some chemical that heats on contact with air..and when they heat they REALLY hot up fast and STAY hot. I have had one tucked inside my jeans all day and it's still warm after 10 hours!! Local heat seems to be as effective as almost anything and providing it doesn't slip down my trouser leg and pop out at some inopportune m

oment, well it's all good.

I have just ordered some from ebay and if this continues much longer it will be a 40 pack bulk order! I recommend them for just about any pain whatsoever..they are so much hotter than the usual brands in the chemists.

Before I slide off this chair and head off to fulfil some parental duties I would like to offer up a cat.

No ok I'm joking, I would not like to offer her up, BUT I would like to be very annoyed with her if there was the least hope of her understanding why I am SO darned CROSS!

Bascially see these??! (Ok small pic sorry) These are skate shoes. Zach's skate shoes.

Not even cheap ones. Portia felt sick. Portia can't be like every other cat and just barf'n'go

Ohhhh no. Portia likes to find a receptacle! She found one. The shoes.

Now I COULD scrape and wash them but she had, basically, filled them. All you cat owners will know exactly how that looks and smells.

The skate shoes are now in the bin and I'm not talking to my cat!!! SULK.

She doesn't seem to care......

Be careful what you wish for?

2009-02-06T09:45:00.000-08:00

OK we wanted snow

We got it.

Big time!! School was closed yesterday to the delight

of the kids. There was a brief moment of angst when Abby and Charlie's schools were listed on local radio and Lucy and

Zach's school wasn't. Cue ten minutes of Zach snarling about how it was the head's fault for being a Scot and that he'd never shut school for a bit of snow.

No-one was more relieved than I when the school was in fact closed.

Then we had another problem. Three teens desperate to get outside (at 8 am) and only one plastic sledge, long abandoned at the back of the shed. The two eldest ~~hurled abuse and thumped each other~~ sorted it out between themselves and disappeared, having pinched my hats, gloves and wellies!!

Lucy took a little longer to be up and doing and Charlie, despite his obsession with the forecast was not particularly eager to actually experience it, so it was not until lunch time that we girded our loins and headed outside.

I can't walk far or well at the moment..the probem of the earlier blog entries is still very much with meand I struggle to move much. However I managed to walk tot he shop and snowball Charlie on the way there and he snowballed me on the way back and was content.

We saw children just outside our house rolling a giant snowball onto the grass. We pass them every day and they always smile and look curiously at Charlie (who never goes out to play) I'm sure they would be friendly and I asked Charlie if he'd

like to go over the road and join in.

The look of panic on his face told me otherwise.

I guess snowballing mum is as far as we can stretch his comfort zone!

Meanwhile Zach and his mates went to the rec for some traditional snowball rolling...

It makes me smile to see it. These are the kids who are on the edge of grown-up-ness..they try to look cool, be cool, (hate the ear stretchers in Zach's ears but that's another story...) but give them a few inches of snow

and they are all just KIDS again.. and I like that. I like that they have the opportunity to PLAY and that even

adults who *should* be at work are grinning and lobbing snowballs too.

Lucy and her friends also came out to make shapes in the snow. Can't think what they made but they look very pleased with themselves...

Finally...

2009-02-03T12:20:00.001-08:00

At this precise moment it is snowing.. (yesterdays uk stopping loads missed Oxfordshire to our great disappointment.) Abby is almost as obsessed with the weather forecast as Charlie and a moment ago she ran down the stairs and they both ran outside..

Can you see the happiness???

Charlie has checked the weather forecast every few minutes since Sunday. No I'm not joking. he finds the uncertainty of weather forecasting almost impossible to cope with.. Charlie lives in a world of absolutes and not knowing EXACTLY if it's going to happen, when and how many inches... is actually very stressful for him.

By default it is for us too, so for the moment can we just say.. 'LET IT SNOW!!!!'

17..

2009-02-01T12:42:00.000-08:00

Yesterday my baby turned 17. HOW CAN THAT BE?!! I swear it was 10 minutes since she was placed into my arms with 'it's a girl'.

I don't even have any baby photos to share.. it was a pre digital time!!

She was

a little Winston Churchill in

pink.... a plump face and bald head! All 7 pounds 15 of her and she was the most beautiful creature alive.

She still is. A lot less like Winston these days, Willowy and elegant looking (tho quite clumsy in actual fact) Quick witted and sometimes sharp tongued but always loving, always funny and always always mine.

I am desperately proud of the young woman she has grown into. Our relationship hasn't always been easy.. she was a tricky toddler and a stroppier than stroppy young child! But these days it's not such a battle of wills and I try to respect her independence while making sure she knows I am always there for her.

Today I traded my car in for something that Abby will be able to learn to drive on. Just warning Oxfordshire...:):)) (Sadly my Smartcar is an automatic so unsuitable to learn to drive in, and no-one would insure our MPV for her!)

Of course we *should* have gone for something completely boring and as basic as possible..like the tiny Fiat I saw up the road..old banger. But hey if I have to lose my beloved Smartcar it has to be fun... so we are trading my car in for this... yeah Suzuki Jimny. Square, dead easy to park and hopefully Abby proof!!!!

Scary watching them all take these steps towards independence. I'm not sure I'm ready for it, and I'm VERY sure I'm not old enough....:)

Do I spoil her or not?

2009-01-23T13:55:00.000-08:00

Last weekend a horrid thing happened. Abby went to a party at a local football club. This is a regular event and so far nothing has ever happened that has warranted more than an 'I told you so' (two vodkas!..predictable results for a very lightweight girl).

This time it was a friend's private party rather than a youth event and there was no locked cloakroom for bags. Abby's bag contained her brand new makeup.. expensive stuff she had saved her wages to buy, her phone and her ipod. Her money too.

She hid it under her coat. Needless to say her bag was rifled and the makeup, and money stolen, the ipod, curiously, was smashed and thankfully her phone was in a secret compartment. Even her work trousers, stuffed in her bag as she'd changed at a friends, were gone. Abby came home very upset indeed. Actually that's an understatement.. her ranting at 1am woke me up and continued until I rammed ear plugs in my ears and refused to talk any more.
In the morning when she was fractionally more rational we talked about how sadly you just can't do that.. trust people:(

I told Abby she would have to replace her makeup etc herself.. I neither have the funds nor do I think she should escape the lesson that looking after your own stuff , is important.

However she now has no ipod.. and I do feel bad for her. Her ipod was an extention of herself on her bus journey to school every day.

She is 17 next weekened. It's more than I would spend on a birthday, but maybe I could ..just this once.. buy her a replacement????

I know..I'm a sucker...... but she is my baby.....

Need a few vibes and prayers please

2009-01-22T12:35:00.000-08:00

For me.

An old medical problem has made a horribly sudden reappearance. I won't go into details as you might be eating.. but it's internal, it should have been solved by my hysterectomy and I'm in so much discomfort I can barely walk.

I'm also terrified it won't go away again..and there is nothing else surgically that can be done.

Miserable and scared here.. need healing thoughts...

NOOOO please nooo

2009-01-21T13:15:00.000-08:00

Charlie is starting to obsess about Christmas 2010.

He is also worrying about why we don't have a calender for 2010 yet.

GRANT ME STRENGTH. It could be a long year.....!

Oh my what have I done??

2009-01-21T06:36:00.000-08:00

I love ebay. I know, it's something akin to gambling which I hypocritcally disapprove of (at least on ebay if you will the big you actually get something and if you don't you haven't lost any)

However I generally ebay on a

small scale.. pair of jeans here, PS2 game there.. nothing major.

Last night I won this!

Rather more expensive than my usual bidding!! However I am feeling very pleased with myself because a) I went and had a good look at it before I bid and it's in very good nick b) it suits the purpose for which it is destined, perfectly.

It's not for me. ~~Too bloody cold~~ I prefer transport with a roof these days, although I did used to have a motorbike, as did Trev. No this is for Zach.

Zach will be 16 on 14th of march and his heart's desire is a moped. He did rather fancy a new retro styled (think Vespa) one but we pointed out that in another year he will either want to upgrade to a 125cc bike or will be learning to drive a car so for now, the cheapest thing that runs ok is the best way forward.

We are buying the bike (same cost as Abby having her laptop for her 16th) but his savings have to do the insurance etc and he will have to find a job to run it.

I hope he doesn't fall off too hard or too often.. but I am sure he will have a lot of fun.

Maybe on a sunny afternoon I will have a quick go on it after all....

I'm quite pleased with number 1 son at the moment generally. He has coped with his first break up with maturity, and he just won an award for product design , and is trying to turn it into a job opportunity with a local signwriting/vehicle wrapping company. I like initiative...

DLA DLA DLA

2009-01-12T14:34:00.000-08:00

No I haven't left the planet..currently I am on Part 9 of Charlie's Disability Living Allowance renewal forms. Yes that hideous package dropped through the letter box the day after my birthday. Aren't I lucky?!!

This is the 4th time for Charlie, and every time it irritates me more, and I have to be careful not to let my irritation show. No-one no-one NO-ONE would be more delighted that I, if Charlie magically became, dare I say it, 'normal'. If suddenly he could shower himself, go out to play, WANT to play, meet his friends up town for a laugh and ride their bikes together. If he could hold a two way conversation, if he could accept a change of routine without being so anxious he can barely breathe...

Yes I'd be delighted.

The reality is though, that Charlie has significant needs. Not dramatic

ones.. he can walk he can talk but independence and the possibility of a 'normal' adult future is very very remote. And so we go through the rigmarole of having to describe his every deficit in great detail.

Can I just say I hate it.

He is so precious to us. His achievements are extra special, his quirks accepted and his obsessions tolerated. His otherworldy inward looking peace that comes from being more interested in TV listings than in peer appropriate stuff.. well sometimes I envy him. But that doesn't make it any ea

sier for filling in section 8!!

On a lighter note however I have an escape. A big, beautiful escape in the form of four new books to read. I am reading the Twilight series by Stephanie Meyer.

AWESOME!!

Maybe you don't know it about me but I have this sad fettish. I blame

these two:

Yep the girls. It was a fair few years ago, one wet half term holiday that Abby and her then best freiend Katie forced me to sit down and watch an entire season of Buffy (the Vampire Slayer)I went from scoffing at them

to hooked in about 48 hours, and so my love of all things vampire began!

We collected the entire series in the end.. hell, Abby and I can quote and name each quote from virtually any episode. There are 7 seasons and 22 episodes in each so that tells you a little about how um, ~~ridiculously obsessed~~ dedicated we are.

We continued to Angel, then more recently Blood Ties , and Moonlight.

One theme... rather attractive looking vampires either doing their bit for humanity and suffering nobly, or alternatively being BAD and having a great time doing it.

I kinda prefer the bad guys...

ANYWAY... the latest in this theme is a 4 book series by Stephanie Meyer. The first book, entitled 'Twilight' has also just come out at the cinemas..and if you fancy a night of vampires and teenage romance, nicely done.. it's a great way to escape. The books are very good indeed and at the moment Abby Lucy and myself are racing through them. We have had to borrow extra copies as we are all chasing each other's nightly reading sessions and trying not to let eachother know what happens next!

At the moment I'm rewarding myself for a section of DLA with a couple of chapters of book three (Eclipse).

You have no idea of the self control this entails.

I WANT. TO. READ.

I do not want to be describing to the DLA people why my son needs help with every part of his day.

I want to be in Forks, Washington with eighteen year old Bella and her rather lovely (if slightly chilly) boyfriend. He wants her to stay human, she's not convinced and then there is an equally attractive 6 foot 7 hairy friend who would really like her too...

ah escapism at its best and a cast of stunningly attractive blood suckers to boot....

Ok I'll do another section tonight so I can REALLY reward myself with the rest of book three..

That's Edward and Bella up a very high tree btw.... just thought I'd put that in to amuse myself!

More photos Maestro please...

2009-01-03T15:12:00.000-08:00

There are a a few very special things about going away for New Year with friends.

This is one of them.

On the left we have two friends. One is 7. One is very nearly 16. However age is immaterial when there is real affection and believe me there is here!

The children are so much better than adults, in general. I guess it because every one has grown up with a sibling who has a disability, and the children with a disability have grown up amongst siblings and friends who see every one as they are.. equal mates! No special treatment just lots of laughs and lots of rough and tumble . I often feel nervous of upsetting other people's little ones (I think I have a talent for making babies cry!!) but my children have no such fears.. they dive in and as a result enjoy wonderful relationships with old friends and new alike.

AHA it has uploaded! Sandy, my friend I hope you don't mind me posting not one but two of your beautiful daughters in my blog but I couldn't NOT post this could I???

Here we have Charlie with Jess. Jess who is as stunning as she is lovely. Charlie absolutely adores Jess and with good reason. However the intensely proud look on his face isn't because he is standing next to a beautiful young woman.... it's because he is taller than she is:):):):) Autism is funny thing sometimes!

Anyone who knows Charlie, knows that it is his habit to sidle alongside people, and stretch himself to his tallest because he has an obsession with how tall everyone is (and is planning on being 6 ft 9 himself.. crazy til you remember he's only 11 and he's 5 ft 5 already...) Here is a prime example.. happiest guy in the world on New Years Eve. he has a shirt (he loves suits) he has a waistcoat (ditto) and he's taller than the lovely girl... life doesn't get any better....

Happy New Year

2009-01-02T08:55:00.000-08:00

We have just returned from our annual escape. Not quite to the sun, but the next best thing.. to friends. Lots of friends!
For the last couple of years our family has joined a handful of others in taking a few days away . Last year we went to Devon, this year to a fabulous group of accessible, interconnecting cottages in Lincolnshire near Boston. The weather was vile (this photo was the one sunny moment!), the company superb!

As some of our group of friends need fully accessible accommodation it is always tricky to find a place that meets everyone's needs, but the cottages were truly lovely, better equipped than my own house and definitely smarter!

It would have been nice to have a pool available but the local one was literally 2 minutes away and had a sauna! First time I've seen my children steam cleaned....

The great thing..the truly great thing.. is the company. Some old friends, so

me new. The children look forward to seeing each other again and even the 'I'm almost grown up' ones rapidly forget to be quite so grown up and get on with the business of catching up.

We managed a swim in the local pool, a new year's gathering (well an every evening gathering pretty much) and a VERY brisk walk along the see front at Skegness on New Year's day..

You can't see it from this pic of Charlie and Trevor (Charlie IS standing on a rock btw he has not actually overtaken his Dad yet!) but it was VERY VERY cold. Absolutely bloody freezing in fact. It was dull grey and icy!

However we have a tradition of ~~making the hangover worse~~ taking some sea air on New year's Day so off we all went..well most of us!

To our absolute AMAZEMENT we saw a couple of young men on the beach... one preparing to swim.

At least he was looking out to sea in shorts and a T shirt until we all started chanting 'SWIM SWIM' at him whereupon he insanely made a dash for the waves. I am now wondering if we have contributed to someone's pneumonia.......

Of course the highlight of the week was our New Years Party... I'm not saying which teenagers had too many beers, nor who ate pretty much a whole trifle (yes I have the photo and you know who you are...)

I have a lovely photo I'd like to share but for some reason Blogger is refusing to upload.. it's rationing me.. so I'll try later.

For those wondering how things have proceeded business wise, unfortunately we have made the decision to pull out. This is very very disappointing to us both. However in the current climate it was a necessary decision and we both feel we have done the right thing. Such is life...

Spoke too soon??

2008-12-24T07:46:00.000-08:00

I am really not the right sort of person for risks and drama. Really. I suspect actually I come into the category of BORING. I don't like drama, I'm not overly keen on excitement and spontaneity fills me with feelings of panic.

It may be that I work with children who have autism because I am not a million miles away from the edges of the spectrum myself . Certainly if you ask my friend Sarah (wife to an Aspie and mother to two girls on the spectrum) she has a great deal to say about my personality on that score..
I do like everything planned months in advance, detailed to the minutiae and I like to consider everything from every angle before I commit. The routine and familiar is my friend.

So.. yesterday we had a nasty not-quite-a shock- but -a lot-more-to-think-about while in cahoots with our solicitor concerning our possible business dealings. Essentially the risks are greater than anticipated and the costs far higher.

Some costs we had anticipated..we are not idiots and know that the professionals we need do not come cheap. However the cumulative costs of fees and taxes and such like are proving very high indeed..approximately 1/4 again of the actual purchase price, and frankly we can't do that.

Maybe a year ago it would have been worth the risk to take out a massive loan in expectation of great returns. Ww have no doubts that we can run the business efficiently. But times have changed dramatically in recent months. Long established companies are going under, and significantly for us, charities.. the main funders for our would be business, are tightening their belts in the wake of the financial disaster all around. In these new circumstances I am not at all sure we can, or should take those risks. It is one thing to take a leap of faith and plough all you have into making a fresh start, but quite another to borrow that which you do not have and hope , in a new time of serious recession, that it will all be ok.

Maybe we can find a way through this. I really hope so. But I'm wary..

Ho Ho Ho and all that!!

Good week..bad week...

2008-12-18T14:21:00.000-08:00

The good is very good. (Imagine a happy face here) (No piccies haven't used my camera in months !)
Trevor did well at an important meeting and we are moving nearer our goal of taking over a business and having a life change. Lots still to do, next step solicitors and legal wranglings, but one VITAL step has been achieved.

Charlie.. X rays done but with the usual NHS efficiency we don't have immediate results. Sigh... fingers crossed!

Bad bit.. today Zach managed to get himself on a 3 day exclusion from school for fighting. I understand WHY.. someone said something nasty about his girlfriend and he lost the plot.. he's a hot head. The other guy is even more of a hot head and it wasn't going to end well! I am not happy with him because I don't condone fighting and he will be kept very busy during his exclusion... let's just say my floors will be clean and my house very tidy!! We have to attend a return interview on 8th jan before he's allowed back in. I have soo much to look forward to!

He has a beauty of a black eye though... will look lovely for our Xmas photos. NOT.

Oh the joys of teen boys... I couldn't have go a quiet introverted academic could I?!! LOLOLOLOL
Still.. that'd be boring...

Next week

2008-12-14T13:31:00.000-08:00

Could be the most important of the Radford households' lives.

A few people know about it, a lot more don't, but on Wednesday next week Trevor goes to talk to some people ..and if he gets the right answers then his future , and ultimately mine, will change considerably . Can't say any more until we know but we are nervous!

He deserves a better job than the one he is now..working long hours for someone else's benefit. he gets on with it because he has to but if we can change things we will..and we are gunning for very big changes indeed.

I too would like a 'get out of jail free' card. Recent events in school have simply ground me down and I no longer have any enthusiasm. I'm hoping the holiday will help fix that, but I'm dubious.. I know there is worse to come at work and frankly I have had enough!

Sounds all very cryptic doesn't it?!!?!

In the meantime I have to take Charlie for X-rays tomorrow up at the John Radcliffe Hospital. A few weeks ago I realized that what I thought was his developing a manly chin, wasn't. It was a growth on one side..hard and bony feeling. Took him to the GP last week and was referred for immediate X rays.. went and sat at Witney hospital only to be told we would have to go to the JR as they needed to do special ones. It was amusing to be sat there.. for 40 mins as the staff were still on lunch break.. no-one taking ANY notice of the patients piling up on the waiting area, only to see David Cameron come in (with camera crew etc) and have all the staff fawning around him!!

Eventually we were see only for them to scratch their heads and say 'oooh nooo can't do all of those here..'
Joy.

So it's off to the JR tomorrow morning and yeah I rang school and said 'sorry we will be late ' with a smile! THAT's how rebellious I'm feeling!

I really hope it's something simple and quickly treatable because the lump is small..but it is growing and it's Charlie's face....:(:(

Fingers crossed....