Monday, 21 December 2009

The Round Robin - love it or hate it?

Well the Christmas cards are arriving and with them the "round robin" updates to fill us in on last year's events. I have to say those we've received have been a lovely read, in comparison the type my parents continue to get I have been pleasantly surprised. I have been guilty of sending them myself in the past but with everything pretty much here now those I don't see can log in and read if they choose.

Is it a good idea to hear all the high points from someone else's family I ask myself? Sometimes ignorance is indeed bliss. Take Facebook for example - FAR too much information. There I was, thrilled with my first party invitation for FIVE years until I read of the daily - yes daily - parties and Christmas events my friends are enjoying. Personally I think one invitation is pretty good when we can also actually GO, providing the snow melts to allow my parents a safe journey to babysit. (Thank goodness for grandparents, the danger money and compensation required by our babysitters here is extortionate!)

Anyway, I digress. The "round robins" have certainly made interesting reading. A close friend from Cambridge days sent a delightful one detailing their many and varied exploits this year. Made me wonder though whether I had once again found evidence for some kind of parallel existence.

CAMPING??? OMG? Where did they order their kids from? Walking to pick blackberries?

We are very envious. Getting ours to walk anywhere together without WW3 would be impossible, going away anywhere is impossible and I have to admit the thought of camping makes me laugh hysterically...... the twins would be up at 5am yelling and running around the campsite and H would be at full throttle until his meds kicked in.... and no-one would be able to eat the same thing!!! My lot seem incapable of amusing themselves without fighting for approximately half an hour right now. And a shared cottage holiday would be interesting too, I suspect we'd probably end up with the place to ourselves after 24 hours!

Jealous, moi?!!!!

Friday, 18 December 2009

The Festive Spirit

Well it happened. When I least expected it. Surreptitiously creeping over me on a fairly stressful morning with a week still to go. All of a sudden I felt the urge to mull some wine, reach for the Quality Street and gaze out on the snowy landscape. That's right, I suddenly got hit by the Festive Spirit.

I should point out this doesn't usually happen to me until nearer the Big Day. Maybe it had something to do with watching the boys make snow angels, helping K bake Christmas Cookies and later surrendering the (tidy) kitchen to festive mayhem with penguin potato painting and glittery snowmen. Or the fact that I have been struggling to maintain the momentum since the little ones broke up a full week ago believing they would be enjoying Christmas within a day or two. Not helpful.... Perhaps I gave in deciding to "ride the wave" in a "if you can't beat them, join them" concession, but I somehow doubt it.

The snow helped, and the fact that I am now "ready". The presents are wrapped, cards delivered and the menus planned, the tree is up and the excitement is already at fever pitch here.(Although shopping is a challenge for next week!)But in the end I think there was a chink in the "Bah Humbug" armour and whilst cuddling on the sofa watching a Christmas movie with the twins I was well and truly "got".

So somehow this has to be sustained until the end of next week, but the Festive Spirit is here, the Quality Street are open (but don't tell Richard...) and the wine ready to mull. Bring it on!

Happy Christmas Everyone!!!

Saturday, 12 December 2009

Perfect!

We've just returned home from the first Christmas Party I have been able to take H to successfully. The West Suffolk branch of the National Autistic Society held their Christmas Party today (see Links section for their Blog) and I took A and H. How totally fabulous are these people? H looked set to have a "wobble" on arrival because the craft tables were not *exactly* what he had planned to do - let's fact it apart from crackers there is a limit to the festive versatility of loo rolls..... - but someone directed us the the Games room and he was one happy boy.

Of course, if you have an ASD the best kind of party is a low-key, quiet event with opportunities to "tune out" and a quiet zone. H even found some others with the obligatory DS consoles and declared it the "best party ever!"

A was in his element creating decorations, bead necklaces for K and colouring much to the amusement of others who were impressed with his concentration and love of all things glittery!

And me? I actually found time to sit with a cup of tea before it went cold (bliss!) and chat to others who are dealing with similar stresses on a daily basis.

So THANK YOU to all the staff who worked hard to make it such a success.

Tuesday, 8 December 2009

Guidance for the singing of 'Festive Songs' (ELF & Safety)

Festive frivolity for a change, rather than anything too serious ;)

The Rocking Song

Little Jesus, sweetly sleep, do not stir;
We will lend a coat of fur,
We will rock you, rock you, rock you,
We will rock you, rock you, rock you:

Fur is no longer appropriate wear for small infants, both due to risk of allergy to animal fur, and for ethical reasons. Therefore faux fur, a nice cellular blanket or perhaps micro-fleece material should be considered a suitable alternative.

Please note, only persons who have been subject to a Criminal Records Bureau check and have enhanced clearance will be permitted to rock baby Jesus. Persons must carry their CRB disclosure with them at all times and be prepared to provide three forms of identification before rocking commences.


Jingle Bells
Dashing through the snow
In a one horse open sleigh
O'er the fields we go
Laughing all the way

A risk assessment must be submitted before an open sleigh is considered safe for members of the public to travel on. The risk assessment must also consider whether it is appropriate to use only one horse for such a venture, particularly if passengers are of larger proportions. Please note, permission must be gained from landowners before entering their fields. To avoid offending those not participating in celebrations, we would request that laughter is moderate only and not loud enough to be considered a noise nuisance.


While Shepherds Watched
While shepherds watched
Their flocks by night
All seated on the ground
The angel of the Lord came down
And glory shone around

The union of Shepherd's has complained that it breaches health and safety regulations to insist that shepherds watch their flocks without appropriate seating arrangements being provided, therefore benches, stools and orthopaedic chairs are now available. Shepherds have also requested that due to the inclement weather conditions at this time of year that they should watch their flocks via cctv cameras from centrally heated shepherd observation huts.
Please note, the angel of the lord is reminded that before shining his / her glory all around she / he must ascertain that all shepherds have been issued with glasses capable of filtering out the harmful effects of UVA, UVB and Glory.


Little Donkey
Little donkey, little donkey on the dusty road
Got to keep on plodding onwards with your precious load

The RSPCA have issued strict guidelines with regard to how heavy a load that a donkey of small stature is permitted to carry, also included in the guidelines is guidance regarding how often to feed the donkey and how many rest breaks are required over a four hour plodding period. Please note that due to the increased risk of pollution from the dusty road, Mary and Joseph are required to wear face masks to prevent inhalation of any airborne particles. The donkey has expressed his discomfort at being labelled 'little' and would prefer just to be simply referred to as Mr. Donkey. To comment upon his height or lack thereof may be considered an infringement of his equine rights.


We Three Kings
We three kings of Orient are
Bearing gifts we traverse afar
Field and fountain, moor and mountain
Following yonder star

Whilst the gift of gold is still considered acceptable - as it may be redeemed at a later date through such organisations as 'cash for gold' etc, gifts of frankincense and myrrh are not appropriate due to the potential risk of oils and fragrances causing allergic reactions. A suggested gift alternative would be to make a donation to a worthy cause in the recipients name or perhaps give a gift voucher.
We would not advise that the traversing kings rely on navigation by stars in order to reach their destinations and suggest the use of RAC routefinder or satellite navigation, which will provide the quickest route and advice regarding fuel consumption. Please note as per the guidelines from the RSPCA for Mr Donkey, the camels carrying the three kings of Orient will require regular food and rest breaks. Facemasks for the three kings are also advisable due to the likelihood of dust from the camels hooves.


Rudolph the red nosed reindeer
Rudolph, the red-nosed reindeer
had a very shiny nose.
And if you ever saw him,
you would even say it glows.

You are advised that under the Equal Opportunities for All policy, it is inappropriate for persons to make comment with regard to the ruddiness of any part of Mr. R. Reindeer. Further to this, exclusion of Mr R Reindeer from the Reindeer Games will be considered discriminatory and disciplinary action will be taken against those found guilty of this offence. A full investigation will be implemented and sanctions - including suspension on full pay - will be considered whilst this investigation takes place.

Monday, 7 December 2009

Whoops!

Eeek!

Well I have well and truly landed myself in it this time! Having managed to suitably impress the local Wraparound Care/Preschool that I know a lot about website building I've been given the job of rebuilding theirs. What I wanted, it's fun but now I'm feeling slightly nervous!

I've joined the Committee since H uses their After School Care and I felt I would like to "give something back" whilst gaining an excuse for some (limited!) kind of social life and the opportunity to dust off the old grey matter. At least, I figured I could book a Tesco delivery and be conveniently out leaving Richard to unpack at least once a month!!!

I have done this before, (the website building, not the Tesco delivery avoidance!) and I LOVE messing with on-line stuff, but it's a bit daunting nonetheless. I find the whole on-line creation process totally absorbing, for me it combines my love of writing, creating, designing and gives my artistic side an outlet. It's been a while since I was let loose on the public though, and exposing my abilities to further public scrutiny leaves me feeling about 21 again and trying for my first job.

Anyway, watch this space. Time to embrace my inner geek and get cracking I reckon. Nothing like a deadline to focus the mind!

Wednesday, 2 December 2009

We found "hamster"!!!!

Three trips to town later.... and countless calls to all the shops we visited and we found him!! One happy small boy :)
It would appear "Hamster" became engrossed in the children's magazines at WHSmith and got left behind. The Wonderpets saved the day (and Mummy!) and he is safely home on A's bed. Thank goodness, Mum was at least as worried as A was!

Monday, 30 November 2009

A Futile Search for a missing "Hamster" :(

What a traumatic evening.... I always knew it could happen, it was a potential trauma all parents face but I had somehow managed to avoid for the past twelve years but this afternoon it actually happened. A has lost his "hamster". I should point out the reason for the inverted commas. This is not a real hamster, in fact it isn't a hamster at all, but a much-loved and long treasured beanie toy. And it really isn't a hamster (or "hampster" as A calls it) it's a panda.

A has had this precious cuddly for years, they are given to children who attend the Portland Hospital and whom therefore become members of the "Portly Panda Club". All the children receive these bean bag toy pandas and both twins had them. Like everything else which has been duplicated by accident or necessity his had an "A" on the label and K's had a "K" on. They have been wrapped in muslins, like babies, carried around everywhere possible and I have been so careful to keep tabs on both of them. Finally it happened, the inevitable I guess - one was left behind in town this afternoon.

A has been quite stoical. I've phoned everywhere we went, driven back after collecting J from his bus and hunted all over the place. On failing to find it this evening we headed home about 6pm. K was so sweet and offered him her "hamster" - which I was so touched about. We arrived home and he started to cry. Obviously I comforted him and he pointed out the one he held didn't have an "A" on the label. However what amazed me most was when he said:-

"But Mummy, I'm sad because hamster is missing, and you will cry if we don't find him." !!! Bless. Empathy in bucketloads (thank goodness) and hopefully not emotionally scarred for life!

He's in bed asleep now... and I'm off to check ebay for alternative pandas! (sorry, hamsters!)

Wednesday, 18 November 2009

School Nativity Plays

Christmas just wouldn't be the same without a school Nativity play - complete with plastic baby Jesus, shepherd's in dressing gowns and tea-towels and fake angels covered in silver tinsel. The sweet simplicity of a nursery production of fifteen minutes which (I know) has taken the teachers and assistants weeks of careful preparation is the essence of its success. More complicated productions with older children have something different to offer in their frequent attempt to convert the traditional Nativity into something more current and acceptable to today's youth -
but I love seeing 3 and 4 year olds stumble on stage in their too-long costumes whilst looking for Mummy and Daddy in the audience.

This year we are in for a treat. A has been chosen to play "Joseph" and K is an angel. (Of course!) However my current difficulty is explaining to her that angels are different from fairies and although they do indeed have wings her wand will have to stay at home. This didn't go down well but I'm working on it. A on the other hand is chuffed to bits to have been chosen to stand over Baby Jesus and fortunately doesn't have to say his name during the production, since I think a lisped "Jofish" is very cute but may be a little confusing for the audience! I must admit to being stupidly proud and am anticipating the big day eagerly. Of course, he will most probably see me and run off the stage on the Big Day for a cuddle!!

H's Christmas Production is a closely guarded secret at his school, but he is participating this year which is great. I did hear that someone had make the mistake of referring to Christmas as "Jesus' Birthday" though, which they hastily regretted when H proceeded to explain how Jesus was most probably born in July and Christmas couldn't be called his birthday since it just wasn't "right".

Note to self - Must keep the theological philosophising to myself in future.......



Sunday, 18 October 2009

Ice-Cream Meltdown on a Cold Sunday afternoon

There is a God. I have proof.

Today we visited my husband's parents in rural Cambridgeshire. Well, fairly rural and certainly not in town. You'll see the relevance later... H was in a really twitchy mood, everything was bothering him and he was not happy to be fobbed off with his world of Pokemon on the DSi, needing instead to point out at every available opportunity how distressed he was. He even resorted to some echolalia and stimming, which I find rather unnerving since we are definitely seeing some regressive Autistic behaviour which I hadn't been prepared for.

My in-laws live a quiet life and an invasion of a large family must be a challenge for them at the best of times, but H was not built with any type of volume control and tries the patience of most older people on a good day. Today was not one of those days.

At lunchtime he decided he needed ice cream for dessert. In fact, skip the main course and forget the cutlery, he just needed ice cream. Now.

After realising there was no way of explaining the reality he chose to ignore (that there was none) and the implausibility of his preferred parallel universe (where we magically produced or made some) we tried ignoring him. But anyone who has a child with an ASD will know the odds of this tactic succeeding are about as good as winning the Lottery! Some chemistry experiments and playing yo-yos with spiders (don't ask) with Granddad helped buy us some time (Granddad is now recovering with a stiff drink in a horizontal position no doubt)but by 4pm we were running out of ideas and H was NOT running out of steam. And that's when we heard the most bizarre of sounds in a smart Cambs village cul de sac full of retired people and very few children. On a rather chilly Sunday afternoon. It was an ice cream van.....

So there you have it. Irrefutable proof that there is a benevolent God. One who realised the desperate nature of our situation and came to the rescue. Perhaps this God has an appreciation of life on the Autistic Spectrum or at least some experience of dealing with those on it. Pity then that I don't have his number for next time....



What was it Jerry Springer said? "I know of nobody who is purely Autistic or purely neurotypical. Even God had some Autistic moments, which is why the planets all spin."

Wednesday, 14 October 2009

Coffee Shops and Clinics - A magical mystery tour of London via "Underground Ernie" with a princess and her wand!

"So that's a tall, skinny, sugar-free vanilla Macchiato...." the Starbucks barista repeated back to me trying to suppress a grin. Well, it had been a long day, I *shouldn't* be drinking that much milk but a black, brewed house blend just wasn't going to cut it this time....

K and I had travelled into London (sorry, "Town", with the important capital "T") for two appointments with two different Speech and Language therapists and a Video Fluoroscopy (real time swallow X-Ray) in an attempt to make further progress and future decisions on her reflux and the impact her gut symptoms were having on her pro-motor development. The day started well, we left the house before H had woken up, K had chosen matching skinny jeans and her Next imitation Uggs to "match Mummy" and was surprisingly excited given the previous trip last month for more invasive tests.

We travelled light - one child, no buggy and gratifyingly normal adrenaline levels since I had avoided the pre-Ritalin nightmare back home. (I cannot describe the enormous positive impact that has on the rest of the day.) We ate breakfast at Liverpool Station, a necessity rather than a luxury since by 9am I was in dire need of caffeine after far too little sleep over the past week month year.

Today I saw a different London. Our first appointment was in Sloane Square and it was my first ever visit to this part of London. I found myself in a delicious time warp of duffel coats and Startrite T bar shoes, feeling oddly unique in up to date fashion myself. There wasn't a child there without a cashmere cardigan, tweed shorts and beautifully tailored shirts or blouses. I found myself pondering whether I should be growing out K's fringe and clipping it to one side, but quickly snapped out of my reverie.

We were drawn to "Peter Jones" and after the princess had been supplied with a magic wand to compliment this fairytale idyll we window-shopped, finally purchasing some of the ubiquitous shoes for school described above.


 Having never before been to Kensington/Chelsea I'm not sure we did it justice since the shoes were required and we paid no more than at home, but they DID come from "Trotter's Children's Outfitters" and we have the bag to prove it.

Our experience was complete as we passed Dame Maggie Smith as we headed back to the tube!
K sang "Underground Ernie" much of the way to the hospital, then back to Liverpool Street as we hurtled round the entire Circle Line during our trip.

It was, in actual fact, the single most useful and enlightening trip of its kind for us (obviously helped by the magical powers of K's new wand!!!) and we will be returning to my (newly) favourite part of London for Speech Therapy sessions in the not too distant future. Next time though I might leave the skinnies and Uggs at home and make sure K has her Startrite Mary Jane's on. It wouldn't do to let the side down.

Saturday, 10 October 2009

"Under the radar" and when to worry!

I had an interesting chat with A and K's nursery teacher yesterday. Apparently she hadn't realised how competent/able A was because he often "slips under the radar". She's realised he has his own agenda and likes to (quite cunningly I might add) complete tasks and move on. He makes little fuss, is always busy and has no interest in being star pupil like his sister.

K can recognise all her letters and knows the sounds and willingly demonstrates this in school; so came home with a letter book. A was most indignant, not that he hadn't got a book, but that Mrs W hadn't realised he knew at least as much as his sister. His teacher was actually concerned that she might have "caused me some trouble" by sending one home with a book but not the other, but we treat them as individuals so I wasn't bothered in the slightest. She spoke to me and commented that A often "slipped beneath the radar" and had his own plans for each session but he was happy, socialising and doing well.

Now, in actual fact the time to worry with A is when you can't hear him. When you are not aware of him, when he is "below the radar" he is most likely decorating the walls with lip-salve because he likes the oily texture......, signing his name everywhere "to practice", re-wiring the Wii (yes it WAS him) or downloading the entire "I can cook" recipe book from the CBeebies website and printing each page. He has also been known to link everywhere in the house with sellotape!

Granted this is difficult for his teacher to grasp. After all, four yeas ago she had H in her class. Now with H, the only time you do not have to worry or think about what he is up to is when he is quiet. Which let's face it isn't very often. So Mrs W might be rather pleased to have a quiet boy from our household who has his own agenda, completes everything required with minimal fuss and slips away to do his own thing. However, I hope she's got that interactive whiteboard insured, has locked away the lip-salve and sellotape.... and the computer isn't connected to the internet......

A's take on things was pretty amusing actually. I asked him if he was going to be bringing a book home soon. He replied "No Mummy, I don't need the practice!!!!

Thursday, 24 September 2009

An Ode to the concept of "Special"

Humour me, it's been a bad day...

"Special" is the child who wakes you up screaming like a banshee before 6am

"Special" is the cat who needs a premium on the cost of spaying to avoid those pretty spots...

"Special" is the glitter on the masterpiece created ON the kitchen table and signed underneath, ON the table, in biro

"Special" is the medication which can only be collected from the main surgery - but it was closed due to a "Special" type of day

"Special" is the Leave your son's Consultant has been granted which is so "Special" you can't be told why and no one saw fit to let you know why the June appointment has yet to be realised

"Special"is the permission needed for Harry to attend wrap around care....but it's so "Special" everyone forgot to book him in on the "Special" form

"Special" is the Statement which took YEARS to fight for and win, only to be used as extra crowd control in the class

"Special" is the permission needed for the extension which you thought was the same as everyone else's

"Special" is the time in the bath when everyone is in bed

"Special" are the cuddles in front of the TV with everyone together

"Special" is the reality, not the pretence. The underneath, hiding behind the "Special" facade

"Special" is the glass of wine after a very long day. ;)

To Mel - who shares my type of "Special" life ;)

Tuesday, 8 September 2009

It's official. I don't want to teach ever again!!

I think having four of my own children has flipped a switch of some sort because I spent most of my life pre-children wanting to teach more than anything else. The fulfilment from watching a child grasp a new concept, gain confidence in something they found challenging, getting to organise the classroom MY way (rofl.....) all seemed incredibly attractive. I loved the few years I taught full time too. However it would seem my "small child" energy supply is seriously depleted after nearly 12 years and reserved solely for my own small (and the not-so-small) children.

I've started volunteering at H's school - literally just started today, but the "buzz" I used to get on entering a Primary School just isn't there.... and something tells me it may have migrated to the coffee shop with the cappuccino, comfy chair and a newspaper. Maybe it requires sufficient sleep to generate enthusiasm but I don't think that's it to be honest. I think I've moved on - not sure where to just yet but watch this space!

Monday, 24 August 2009

So How do you know when you're "done"?

A friend on an online forum posed this question about feeling your family was complete. Someone replied "I do wonder about people who get caught in the baby cycle without stopping and taking a step back from their comfort zone".

I've been thinking a lot about this lately. More isn't an option for us anyway, we would need fertility treatment and with H's needs I couldn't cope with more. AND another would most definitely have even more severe Reflux, probably ADHD and Asperger's so it's a no brainer deciding that we are done!!

That, however is different from "knowing" you're done. I do really miss the tiny baby thing, wish like hell that I could do the early months again with any of them without reflux, I feel really cheated on that score. The constant screaming was a bit wearing when everyone else seemed to get at least 10 minutes a day cuddling their new babies! (jealous, moi?!)

As I have now parted with the buggy, and I packed the slings away at the end of last year I have really felt the pain. (How many of us wish we had discovered things like slings years before so we had really had plenty of chance to put our new knowledge to good use?!) I feel really sad that I'm "moving on" but there is some excitement too. I'm tired, (5am starts for nearly 12 years has definitely taken their toll lol!!)I'm feeling "old" and quite enthusiastic to spread my wings outside of the home. The older ones are exciting too, I LOVE watching J's cricket success, sharing in his triumphs, watching H's slow steps towards greater independence and spending time helping fuel the twins' incredible excitement as they learn about their world.

What I'm trying to say I think is that I do *know*. I'm ready to move on, share the next stage with my family looking forward not back. Being part of online forums definitely makes it harder at times (seeing the scrummy newborns! ) because I think in real life when you are ready you move on, and rarely see newborns as your children's friends grow up too. However, these online communities are a lifesaver for many for whom wider socialisation is impossible or contact with others dealing with similar issues is facilitated across geographical, social and economic barriers.

I'm ready to leap out of the comfort zone and join the next stage - without prams, cots, nappies, dummies and total dependence. Don't underestimate how VERY scary that is when it's what I aimed for my whole life, obsessed about for 24 years before #1 arrived without a single though for what lay beyond.

But you know what? It's quite exciting too :D

So yes, I think you do *know*!

Sunday, 16 August 2009

My son

Noise. Shouting. A tornado bangs open the door disguised as a banshee.
Unable to stir myself fast enough from the depths of sleep I endure the screaming overtones from under the duvet.
The irrepressible need to expend a night time of stored energy sends him ricocheting around the house.
More screams.
Noise.
The timer starts..... half an hour until it's over.
Shouting, cursing, it's everyone's fault. Apparently.

Vainly I try to channel the irrepressible energy within socially acceptable limits
Keeping everyone safe.
Fifteen minutes.
Breakfast would be a good idea - but he won't until the medication kicks in, can't when it does.
The distress is palpable, on all sides!
Nothing broken yet, no one hurt so far.

It's almost amusing at times. Well, almost. And sad - really sad.
I watch the person inside emerge from the noisy, aggressive strait jacket which alienates everyone as the minutes tick by.
A rare glimpse of my special son, a chink of light through the exoskeleton I hate-

Before the curtain comes down, he calms down and retreats into himself once more.

Wednesday, 12 August 2009

Hurrah for Legoland!!!

So last week I took H down to stay near a friend in St. Albans (hotel courtesy of Tesco Clubcard Vouchers) and took him to Legoland for a day. Someone had told me how great Legoland were for kids with disabilities, and they were not wrong. I obtained a letter from H's ADHD nurse regarding his total inability to queue, and in fact his lack of understanding of the CONCEPT of queueing. After diagnosis no one bothers with follow ups for the Asperger's/Autism so a letter for that alone might be more complicated to obtain...

We took the letter in and had our hands stamped with our "Exit Passes" which allowed us to walk up to the exit of each ride and jump straight on! Amazing! Usually the queues are so bad at Legoland you manage a couple of rides only each side of lunchtime, but we did the LOT :). Taking H without an Exit Pass would have been a total impossibility but this gave him the opportunity to enjoy a "normal" day out. We managed only 3 relatively minor meltdowns, two when Mummy couldn't find the Exit fast enough and one when I realised the Lego game he wanted wasn't Vista compatible, but the staff were great. I got in free as his carer too.

H thought the hotel was "really posh, real luxury" but kids are (thankfully) easily impressed at that age! There was a pool and even after 9 hours walking around the Park (who informed him it close at 7pm?? There was no way he was leaving earlier once he knew that lol!) he wanted an hour's swim.

Breakfast was something else... the buffet really confused him. "How do you know what to eat?" he asked. "How can I know what I should eat first?"!!!

Sunday, 9 August 2009

For all my readers who claim DLA for themselves or family members. Please read!

The Care Green Paper lists proposals for the future funding of social care. One of the proposals is that Disability Living Allowance and Attendance Allowance, known as disability benefits will be abolished and the money allocated to local social service departments or a new national care organisation. The implications of the loss of this money for disabled people and their families are many. Whilst this money would then be used to provide care funding, the funding an individual receives will be subject to assessment, and it is likely to focus on the 'basics' of care provision. There is likely to be strict criteria, even where people use so-called self-directed support.

DLA/AA on the other hand is paid directly to disabled people who qualify, to be spent in any way they choose, and is aimed at meeting the extra costs of disability. Extra costs of disability has a broader definition than care, and could mean care outside of the statutory assessed and funded provision, but can also mean meeting the costs of extra heating and fuel costs, because of mobility problems, higher food costs, because of needing convenience foods or special diets, extra clothing because of extra wear and tear, more expensive footwear because of foot problems, domestic assistance often not met by LAs, or equipment to aid independence not available from statutory sources, as well as mobility needs such as extra transport costs, there are many more. The ways people use DLA to meet their needs are as individual as the people themselves, there are no restrictions, the claimant has choice, control and independence. Removing the benefit will not remove the needs, which are unlikely to fall within the official definition of care. Many disabled people have such low incomes that they have to use DLA just to meet the basic costs of living. In the most basic terms it will mean a loss of income, which for some may mean the loss of additional amounts, currently linked to DLA entitlement, within other benefits.

Disabled people and their families will suffer, lower incomes mean more poverty, people will have less freedom of choice, and less control over their lives, this will lead to a poorer quality of life for many. Care is likely to be means-tested, it is currently, where DLA is not. Means-testing means that some people in need will miss out on help, just because they have, perhaps a few pounds over the limit.

This is not, in real terms saving money, the new arrangements are likely to cost more. DLA is a very under claimed benefit, not just in terms of people not claiming, but in that people on the benefit often get less than they should, because they do not realise when they qualify for more. Do not believe the media hype, the truth is DLA fraud is very low, underpayment is much more of a problem. Disabled people are also expert in finding cost effective flexible ways of meeting their needs, the new system which will affect many disabled people and involve a huge amount of assessment and administration is likely to be much more expensive.

Wednesday, 8 July 2009

H1N1 swine flu - the new "Man flu"?

So Swine Flu has reached our part of the world. It was bound to happen, the UK ranks currently in the top three countries for cases reported and given the global nature of our society no-one should be shocked about this. It is, nonetheless, a little alarming to hear friends suddenly coming down with the virus and to receive letters home from schools informing us about their cases.

What I find difficult to understand however, is the mass hysteria permeating at all levels in response to the trickle of information and ridiculous "catch it and bin it" Nanny State advice offerings in the media. 'Flu is a normal part of the modern world. We have been fortunate (so far)and whilst the virus in this pandemic has proved to be highly infectious, as is so often the case with such viruses it is also extremely mild. Thankfully the vast majority of us have little to fear from almost any strain but precaution is well advised. But do we *really* need a "cut out and keep" advice flow chart about Swine 'flu? We are well used to children at schools contracting 'flu and other viruses and rarely is there any need to alert the whole community to every sick child or insist on children staying at home long after recovering from what is - for most - a bad cold.

This panicked over-reaction is surely inappropriate when those who have come into contact are advised to carry on as normal? How on earth does keeping the potentially affected patient at home whilst endorsing normal interaction of other household members within the community add up? The worldwide attempt at containment failed completely, so any further attempts to isolate suspected cases are completely pointless. And I use the words "potentially affected" since anyone with any experience of NHS Direct will know full well how difficult over the phone diagnosis is. The symptom list associated with Swine 'flu is in common with the vast majority of community illnesses.

So Mel, I sympathise. We are caught up in the hysteria generated by a government desperate to appear to be holding it all together and doing something useful, and a World Community ashamed of their pathetic lack of intervention in the financial crisis, keen to be seen to be ticking all the boxes on this one.... but really, I think resources need to be directed into preparation for worse, and propagating the sensible advice of many years ago. Keep calm and carry on.

Saturday, 20 June 2009

Life in the Real World - bring back competitive Sports Days!

With all schools holding Sports Day events this month or next, and having attended two myself over the past week..... I've been thinking.

My friends and I feel it is such a travesty that so few State Primary Schools feel it is "right" or "fair" to hold a competitive Event. Their reasoning though is just so intrinsically flawed.

"We can't all be good at Sport and it isn't fair on the less able." Is the excuse I usually hear. But how about the classroom then? There are *always* those more able in maths, literacy etc. and I doubt (and seriously hope) no one would advocate holding the more able back to allow everyone to catch up in class. I know it isn't a popular idea that very academically able children have Special Needs (ie need extra support to help them realise their potential, avoid boredom and lack of attention and progress because they can become quickly disillusioned) but deliberately holding the most able back would be so very, very wrong.

So why do we do it on the sports field? Firstly it is rarely the academically gifted who shine at sport and it gives everyone a valuable alternative environment to compete. I know several children who live for their one day of glory having struggled all year in class they sweep the medals board each Sports Day. Life isn't fair, two of my children have to struggle with additional needs like so many others. One has dyslexia and however intelligent he is, on paper and he will probably never attain the grades he deserves, and the other (as you know if you have read here before) struggles with Autism and ADHD.

Trying to create the proverbial level playing field is neither fair, feasible or advisable. It also makes us as adults look pretty stupid, because the children are not daft and know *exactly* who is best at which event and more often than not feel cheated and fobbed off when offered a paltry sticker! Our children are tougher and more savvy than we give them credit for being. They certainly don't expect - and most wouldn't want - an artificially "safe" environment. It's like Health and Safety gone mad all over again but this time interfering with our children's emotional curriculum. You don't have to unkind or uncaring, just realistic. Most primary teachers are innately good at this in any case, and if children are taught to deal with disappointment at a young age in an appropriate setting, whilst being given alternative opportunities to succeed it can only be beneficial.

The real world - be it the Natural World, the Animal Kingdom or Human Society is competitive at all levels from star to finish. Pretending otherwise is to deny the essence of life itself. So bring back reading schemes, House points/credits and grading in our primary schools, the kids love it, they know where they are and it is the most realistic and useful preparation for life after school. In the real world.

Tuesday, 9 June 2009

Cars – who’d have them?

It is a mystery of modern living that my car seems to spend almost as much time at the garage as it does on the road. OK, this may be something of an exaggeration but over the years since I first owned a car of my own they have all developed minor fault after minor fault in rapid succession. I have always felt it better to purchase nearly new rather than an older vehicle in the hope of avoiding major problems but the less serious ones are just as irritating!

The first step is to find a child free slot to get the problem assessed…. Not easy since there is never any guarantee No.2 son will even stay in school if he gets there. Taking him with me is not an option – his screaming and wailing does sometimes prompt some action but is painfully embarrassing, and to be honest forcing a child who has no concept of time to wait is verging on child abuse and is most definitely parent abuse. R has been known to attempt an MOT “While U Wait” appointment with H in tow but learned the hard way taking a day off work to accomplish this is by far the easier option…

So I get to the garage and after the usual trivialities get the car assessed. It’s nearly always something to do with the electronics. They can rarely find the problem. Their computer can’t find an error log….. and of course they NEVER have the necessary parts. Next comes the highly amusing task of explaining that their tiny run-around loan car is not going to cut it for a family with four children, three of whom are in car seats and one of whom ideally needs a straight jacket or at the very least a third row of seats to be safely transported. I usually have to wait until R is home, or I can enlist sufficient help to leave the younger two behind when delivering and collecting the car.

The latest problem was the parking sensors. When you put the car into reverse they started and never stopped. The kids had a field day at my expense and my parking ability rating has plummeted according to them. Cries of “Mummy, you must be hitting something” did nothing for my nerves, less for my judgement and I’m not sure the innocent “Well done Mummy!” from the younger two made the stress worthwhile when we did successfully park. I had to chuckle yesterday however, when A got out of the car, looked at me very seriously and said “Mummy, I’m very pleased with you!” Praise indeed - but I hadn’t the heart to tell him I had turned the blasted sensors off before parking!!

All fixed now – until the next time!

Monday, 8 June 2009

The bargaining power of a fruit pastille.

It is certainly true that scarcity breeds desire for many things and that is certainly true in our house. Take the average fruit pastille. I imagine if I had some to hand regularly at home their presence would have no impact whatsoever, but the mere suggestion of producing one can persuade the twins to perform wondrous U-turns in behaviour that only toddlers are capable of.

Today was ballet - something the pair of them have raved about and practised daily at home since their first trial lesson. Now they have the uniform and are fully paid up members of the dance school however A had other ideas. Unless he could dance in his Cinderella dress he wasn't playing ball. Not for anything would he put on the black T shirt and shorts he had coveted so much a fortnight ago. In a moment of guile and cunning I suggested H might like a tube of fruit pastilles from the cafe bar whilst K danced.... and we were in business. One fruit pastille later and the promise of another after his lesson and A was changed and in the hall. Perfect. Only problem then was persuading H that he couldn't eat the rest of the packet before the lesson ended.......

Buy yours from "Sweet Wonderland"


Parenting, in my opinion, is 99% mind games and 1% organisation. Perhaps a little else - but not much! Trying to keep on top of the needs, wants and demands of four kids is no mean feat, but I have a little world class expert in mind battles to contend with here. H, with a diagnosis of Asperger's Syndrome, can reduce the toughest parent to a heap of jelly with his relentless arguing, repetitive demands and escalating volume. Personally I think Barney videos at Guantanamo Bay were waaaay over-rated as a form of mental torture - life with an Aspie is often MUCH higher up the scale of mental olympics. Imagine gradually "coming to" at 5am to the sound of someone yelling (at an ever-increasing volume) the morning's explanation of their current state. It's usually "I'm not going to school!" followed by "You can't make me!" etc which is in fact (I believe) designed to wear you down before you have a chance of a positive start. From then on in it's negotiation at the highest level.... in fact Sir Alan would be really impressed by his unswerving dedication to the chosen topic and his ruthless persuasive technique. What worries me is we end up only partially listening and finding we have agreed to trampolining at midnight or similar! But then being allowed more than 5-6 hours sleep would give parents an unfair advantage....

Sadly fruit pastilles rarely cut it for H, unless offered in bulk. His preferred carrot is always more expensive, and usually something to do with Pokemon. I did try offering a single card each time but somehow without realising it had given in to offering a whole pack in one go. The makers of Pokemon certinaly knew what they were doing too - designed to perfectly appeal to every child (and adult!) on the Autism Spectrum in every way. GAME store owners across the country rub their hands together in glee when a new Pokemon game is released, knowing full well it isn't an option to buy for many but an essential, spawning numerous Youtube monologues offering walk-thru advice which H actually sits and listens to whilst playing the game on his console. It's so much more than "just a game" for these kids, and like A's fruit pastille, the creators understand only too well that rarity breeds desire. Each and every pack of cards will be largely full of worthless duplicates whilst the "Super Rare" Pokemon remain elusive and few and far between.

Now, if I could lay my hands on the "Super Rare" Pokemon fruit pastille equivalent I really would be getting somewhere. Whoever said "knowledge is power" hadn't spent a 12 hour day attempting to bargain with a 7 year old Aspie, or indeed the majority of under tens on the planet. What it all boils down to most of the time is holding that super rare fruit pastille or the Pokemon everyone is looking for....

All the Small Things - MummyNeverSleeps

Monday, 1 June 2009

A plague of euphemisms - original/old

Toddler-Speak is so funny......

All four of our children have in their time come up with some highly amusing (and at times pretty damn clever) alternative terms as young children will. From "Hot Boots" for slippers, going for a "Bike-Walk" ie a bike ride with Daddy, to the more extreme "Woomarrer" (Sp???!) for Lawnmower (A) and "Coconut Vegetables" for, well, just about anything (H) we now have quite an extensive Thompson nomenclature. So extensive is it that R and I can be found chuckling to ourselves most days using a totally alternative Thompson dialect. The current favourite is the absurd "Woomarrer" word for lawnmower, spawning "Extreme Woomarrer-ing" for a variety of mowing techniques. Bizarre I know, but you had to be there. Honestly.

On a more serious note it occured to me how so many groups in society are now guilty of the same thing. Certainly my IT Director husband knows "Geek Speak" or "Tecchie Babble" or whatever you want to call it, and the ridiculous jargon used in business to "flag up" the main issues and tackle the "low-hanging fruit"...( Or "High hanging vegetables" according to A which could even be extrapolated to high-hanging coconut vegetables if desperate but like I said, it's a Thompson thing.) This surge of social dialects is transforming society. Regional dialects still exist of course but the population is so mobile now they are considerably diluted. Social dialects like business "Firmware" can seem exclusive and elitist, affirming your membership of whichever "club" you are in. But how to break in to the clique in the first place? It must be like arriving in deepest Yorkshire from Kent a hundred years ago - or the other way around. The same is true on the internet, social networking sites like Facebook have spawned hundreds of new euphemisms, terms, and alternative descriptions. Our current need to redefine everything we come into contact with goes deep and our daily interaction with modern technology has precipitated a lot of this.

So is social networking replacing economics and geography in providing our language, customs and mannerisms? Certainly the internet has a lot to answer for, Facebook for one has transformed how many of us keep in touch, superseding even texting for many as a "one-stop interaction shop". It's a bit dry and cerebral though, I'm not sure a cyber hug makes such an impact as a real one but then so few of us have time for more on an average day. The virtual gifts of coffee and alcohol are tasteless but sin-free, the thought was there but the enjoyment was definitely not.

Whether it is through work or play there is no doubt there has been a huge surge in social dialects - in their creation and use. Ironically one of the side effects of this is isolation and the growth of new barriers in society. Instead of finding it incredibly difficult to get a job in a local or family firm the task is no easier, just different. Instead a knowledge and degree of understanding of appropriate nomenclature is essential - or you don't stand a chance. Breaking into a new social group, now often on the internet, poses similar difficulties. Many's the time I have abandoned a new discussion forum because I don't feel I "fit in".

What it boils down to is this. Human beings are essentially a small group species. Challenge and redefine the Venn Diagram boundaries of society and society will come up with new ones. But it's important not to forget that the newer, possibly less obvious frontiers are no less prohibitive to those on the other side. We haven't actually come very far in terms of creating an open society, and I'm not sure that is what human beings are designed to do, however fashionable the idea may be. Why else are we still teaching adults to work together like our toddlers at home? Are we banging our heads on the proverbial brick wall? As R will often quote "There's no "I" in "Team" but there's a "me" if you look hard enough!" Now that IS extreme woomarrering. ;)

Sunday, 31 May 2009

Apologies for delayed posting...

but it's a bit difficult to type with a teeny tiny 7 week old Bengal kitten in my arms ;)

Tuesday, 26 May 2009

Bank Holiday #2

Typically, yesterday was a bit of a Bank Holiday washout - at least it was if you had to spend five hours on the road trailing the (very wet) cold front which seemed to be directly above us virtually all the way down. We arrived home (K, J and I) feeling rather cheated since lots of sunshine had been enjoyed by all down South in our absence. Can't have it all I guess!

Off we set Friday night, thinking we would avoid Bank Holiday Mayhem, only to discover everyone else had the same plan. Once off the (totally wonderful M6 Toll Road) everything ground to a halt, and although J was able to enjoy waving at everyone as we sat there I had hoped for a slightly more exciting evening. The ipod was dead, and anymore "Jo Jingles" songs or "The Fairy Stories the Fairies tell themselves" and I would have got out and walked. Thankfully the persistent "rubber-necking" plague which affects this country lasted only 6 miles before we could reach a super-speedy 30 mph again. Aaaargh.....

The roads "Oop North" are a complete mystery to me. Those who think the M25 and it's satellites are slightly manic obviously haven't experienced the M6 around Stafford on a sunny Bank Holiday. Games such as "Catch me if you Can" take on a whole new meaning and the urge to force everyone out of the outside lane come what may can be quite threatening. However the choice between a propellor "wind up" plane from Stansted and driving through motoring hell is not an easy one. Both fill me with fear and dread!

I had a lovely break though, drank too much wine and had far too little sleep but thoroughly enjoyed catching up with Gabi ;) Bank Holidays really confuse me though.... I have spent all today convinced it is Monday, which has a knock on effect for the rest of the week! In fact it may well take me all week to catch up, unless A perfects the days of the week and puts me right. It's a current obsession of his to try and get them all in order much to H's annoyance, since he has absolutely NO concept of time himself. The fact that A is expressing a) an interest and b) some level of understanding is incredibly frustrating for H and he considers it easier to shout obscenities than consider the obvious and master them for himself. One day I hope he will gain a working knowledge of Western time-telling without sand timers and visual timetables, but that's some way off yet.

Before you go, check out the Flickr link bottom right, lots of new photos and since we have a new camera some are pretty good! (I can say that since R took them...)

Thursday, 21 May 2009

Time off = time in lieu

Yay! Another Thursday over... sorry for the delay in posting ;) Life got in the way, as it has a habit of doing. Still, Richard is home early and I have red wine and dark chocolate! Antioxidants now, hangover later.....

It's been an odd week. Tuesday I enjoyed a fabulous day girlie shopping with lunch in Cambridge, a rare treat! It involved a fair amount of forward thinking and preparation, not least ensuring someone was available at the end of the phone in case of a H emergency. An hour's travelling home just wouldn't cut it if he jumped the gate and left the school premises, or needed three members of staff to restrain himagain. K and A stayed at nursery for the day (there were FOUR lunch bags out on the worktop on Tuesday morning, how cute was that??) and I had a whole day to myself.

I should point out the chance of such a treat actually happening is rather low. Firstly with four children there is always a good chance one will be ill. Or forget something important en route and feel very ill making you ridiculously late because you have to succumb to their pleas to go home and get homework/sports kit/blazer..... or insert your own option. It also requires H to take his Ritalin early enough to actually calm down and agree to go to school, which is always easier since you can still go in the outfit you started in once he's been firmly deposited in his classroom.

Problem is, "Me Time" can rather go to your head. It's like alcohol, if you aren't used to it it hits hard and Tuesday was a really good, smooth merlot drunk rather too fast.... (I told you Tuesday was a good day, right?) I turned out of Harry's school (the last drop off point for all four) with Maroon 5 cranked up on the radio and my shades on. Coffee en route? I decided not since caffeine + freedom high would be just a bit more than I could take at 9.15am. The roads were clear, the faulty parking sensors turned off and the sun was shining. What more could you ask for?

It was a great day, I spent too much and LOVE my new bag but I have paid for the time off since. My tired toddlers, whom you would think might sleep well after their first full day at nursery decided sleep deprivation is a fair punishment for too much maternal free-time. They loved having lunch at school though and want to do it again but I'm slightly less keen after the extreme stroppiness of the past two days after far too little sleep. (and that could be read as them OR me lol) Harry has given me possibly the toughest 48 hours for a long time and the benefits of my day off are rapidly ebbing away....

..... so it's just as well I've got a WHOLE WEEKEND off starting tomorrow since J, K and I are off to Manchester to stay with a friend and R is home all next week to help with the fallout after. SO I'm high as a kite and excited as hell that I get such a cool break, although I have pebbles in my shoes to assuage the compulsory guilt I can assure you!

Don't you love holidays?

Thursday, 14 May 2009

The wheel of life

Another Thursday over, thank goodness.

There is something innately frustrating about Thursdays. Not quite the weekend but tantalisingly close and for some inexplicable reason always loaded with maximum stress for all concerned. It's as if someone decreed long ago that being "almost the weekend" it was a fair bet that Thursday would be a good candidate for making all the jobs, tasks, activities, responsibilities least likely to appeal more acceptable. A "best option" for clearing down "To Do" lists and cramming in children's after (and during) school classes since it isn't in prime position in the week.

After all, on Monday we're still recovering from the weekend, whether it is a post-socialising alcohol fuelled type of recovery of the young or the total exhaustion after quality time with the children sort. Tuesday is for the nice things in life because there is most of the week left to procrastinate over the less pleasant options. Wednesday, Richard insists, is "almost the weekend" but here we disagree. Wednesday is neither one thing or the other, it's really difficult to summon any motivation at all. Thursday on the other hand, well...... with the weekend looming large I need to empty the ironing basket (assuming the washing got done on a Wednesday lacking in motivational "oomph") plan the meals, clean out the hamsters, tidy up and hope I can get finished by the end of Friday.

Why I have this "Thursday feeling" is beyond me to be honest - it's just NOT a good "day candidate" in our house for a start. As mentioned everything else is on Thursday so there is less time for action on the home front. All swimming lessons happen to be on a Thursday - always have been, in fact when I was teaching swimming the lessons were on Thursday too. (Anyone know whether it is National swimming lesson day or is that an East Anglian phenomenon?!) I barely have half an hour in the house at any point during the day yet enforce this ridiculous timetable of tasks on myself in preparation for the weekend. In my defence both the younger two are now at Nursery on Thursday mornings, but this actually makes the situation worse because I have OPTIONS. Not good. I manage to cram every Thursday morning with all the more complicated out of house tasks too. Meetings (and oh boy do we have a LOT of those.) , prescription collection (actually we have a lot of those too...) and food shopping. Vet trips and garage appointments.

So on the whole, Thursday is NOT a good day for me. My husband insists it is traditionally a really good day for him because it was "Blue Peter" day, not to mention "Top of the Pops" and some other programme of the seventies which featured large in his life :) I'm not buying it. Unless I can persuade Wednesday to take on the tasks currently allocated to Thursday in exchange for a healthy dose of procrastination going the other way my mind's made up. Thursdays never were meant to be easy, the business world has understood this for years and every week they troop out of work early on Thursday and head to the pubs and clubs to recover.

Of course, there are always exceptions ;) . Today my car DID have an appointment at the garage but I managed a leisurely brunch at a nearby pub/restaurant with my Mum whilst it was there. Of course that left only half a Thursday with the full quota of stuff left to deal with but it was worth it. The chance to chat for more than two minutes and sit down in peace and quiet with a coffee probably belonged on a Tuesday but it was greatly appreciated. The croissants were pretty good too! Yum.

Tuesday, 12 May 2009

Little people with the "wind up their tails"!

Well I don't know about the weather where YOU are but here it has been really windy. Not noteworthy windy in terms of anyone else taking notice about our little corner of the planet but enough to be a complete pain in the neck and seriously turn up the hyperactivity dial on the younger three......

Harry has blotted his copybook and broken his clear "no incident" run at school, but he has done amazingly well since we are three weeks into term. Whether his latest box of Ritalin tablets is in fact a box of placebos in an attempt on the surgery's part to either a) play an incredibly unfunny joke on us or b) enrol him unwittingly into an effectiveness trial program I don't know, but one thing's for sure, I could do without cleaning the footprints off the ceiling. He has a little friend coming to play tomorrow evening, from school. This is HUGELY important since it is a major first for Harry. He has only ever had his Asperger's Pokemon mad friend over before and their shared concept of play is to sit back to back and play different games on the Nintendo DS. We are not planning to break any records however, (or break anything else for that matter!!!) an hour's play to include tea is all we are aiming for but there sure as hell better be a genuine Ritalin tablet coming out of the box at 4pm tomorrow or it might be his last play date for a good while!

Speaking of cleaning off the footprints from the ceiling, anyone know of a good cleaner? Ours is reliable (which is why she's still with us) and nice but soooo not up to it. We have had an excellent cleaner in the past - but she had to change jobs since she became allergic to dust!!!!

In fact it really is truly absurd how the "Cleaner Phenomenon" operates in modern Western Society. Those of us with smart Middle Class homes (please see the slightly tongue in cheek expression on my face before bombarding my inbox with comments btw) who actually , for the most part, have high standards pay those whom (it certainly seems in our experience) have considerably lower standards to clean our homes for us! We pay them up to twice the hourly rate for the best childcare available to remove the surface dirt and leave our homes smelling of smoke. (Anyone know a cleaner who doesn't smoke? Send them my way please!) For me having a cleaner is an essential. Harry needs 24/7 observation when the little ones are at home, I don't sit down from dawn til dusk without cleaning the house. (and yes, I am standing up writing this in the kitchen ;) ) So the search is on to find a reliable, smoke free, efficient cleaner who works to my exacting standards. Can't see it happening any time soon!

Saturday, 9 May 2009

It's a good day :)

Today is one of those rare planetary alignments astrologers rave about. Everyone is well. Everyone is happy. All the jobs have been done and we still have a WHOLE DAY left of the weekend ;)

We finally have Harry's proposed Statement through and I have also spent all day rewriting Part 2 which explains his additional needs stemming from his dual diagnosis and his needs in the educational setting. Next comes Part 3 which needs to clearly outline the provision to meet these needs. The excuse for a revised Statement which we received doesn't even come close, and is woollier than the average winter sweater. Phrases such as "access to" are totally meaningless, I would love to have "access to" a LOT of things but it doesn't mean it's going to happen!

Fortunately assimilating a lot of information (assessment reports and information) into a single document is my forte - I have a History degree. But what of all the other (many) parents out there being fobbed off with similarly hopeless attempts to provide Statutory support to meet their children's needs? Autism is an invisible disorder and our children are let down left right and centre. If H were in a wheel chair and needed "access to" classrooms etc I would like to bet it would happen pretty quickly!

Our county is particularly bad - a friend spent 6 years fighting for her son to be Statemented and having moved County it took 3 months. Do the maths. However H does get a lot of support from school, if just needs documenting in the Statement. And a lot more besides.

Anyway... the planets have moved... the two youngest are squealing. My enjoyment of the freshly baked cheese scones will have to wait...

Wednesday, 6 May 2009

Cynicism inspired by lack of confidence or acceptance of reality?

There is a reason for the title. (of course ;) )
The school + Harry saga continues... which is of course all it is to school and the LEA. To us and to Harry it is so much more. So I should, by rights, refer to the "ongoing struggle to get Harry's educational needs met" instead. Partially met would be a start to be honest!

Although we have avoided any fixed term exclusions this term to date, I am pretty sure this is at least partly because it is pretty damn hard to send a child home for difficulties you have just told the Authority are now (all of a sudden) well managed. If I'm honest, I think the Ritalin/Strattera combination helps but as an unpleasant side effect has increased Harry's anxiety levels along with the small increase in self-awareness. It's slightly easier now to pull him back from the "point of no return"-brink of all hell breaking loose-aggressive outburst stage which is a relief but this just makes it easier to continue ignoring his needs in school. Still, there are HUGE problems raised by the Annual Review and NOT addressed by the new Statement so I am meeting the Head on Friday. I really, really hope I'm wrong but am beginning to feel rather cynical about the whole thing - it's a "done deal" since the LEA aren't going to budge and the Head has been told as much. I hope I AM wrong.

So onto the crisis of confidence...

I was rather fancifully browsing a local council website for teaching jobs... part-time, job-share etc. There was an ideal one at the school next door to my parents', my old primary school in fact! It was a 2 day a week job share and although it was Key Stage 1 (5-7) not 2 (7-11) I thought it was worth a try. (At least I had emergency childcare virtually on-site!!!) I printed the form off and everything, started writing......
...and suddenly what used to be a pretty damn good CV now seems really lame :(
All the hard-won qualifications are still there of course, but not a lot of experience and many, many years at home. Not for a minute do I regret a minute of that but how on earth do you start to relaunch yourself into the world of work after such a long gap? It sounds almost clich├ęd, not something I thought would apply to me (for some reason) but I really do lack the necessary "returning to work confidence" to go for it.

Luckily for me, I don't have to. This was an "optional extra" and one I have decided to cast aside. For now!

Sunday, 3 May 2009

Illness + sunny Bank Holiday weekend = total waste of time. Well, almost

WHY am I *still* feeling so completely rubbish when it is a) Bank Holiday weekend b) sunny and c) Richard is at home and not actually working for once?? My parents even have Harry for the weekend and I am feeling ill. Eurgh! Total waste of time!!!

Actually I have been ill all week trying to pretend otherwise since like "holidays", " illness" is completely incompatible with small children - which is why I usually refuse point blank to get ill, so I'm not sure what went wrong this time. Anyway, today I woke up feeling rubbish but began to recover by midday so we managed to have lunch out and view a couple of (extremely gorgeous) litters of Bengal kittens!

We have been pondering getting a dog for a while, but to be honest everyone is completely correct telling me I don't have the time and am too house proud for a puppy. Most rescue dogs are, sadly, abandoned for a reason and I decided to defer to public opinion and accept that our family life now + dog = totally incompatible. Sooooooooo not being one to give up we started thinking about getting a kitten. We have a gorgeous 13 year old neutered male cat (Timmy, called after Dicken's "Tiny Tim" because at 6 months he was really tiny..... but that didn't last and he's now a whopping 8kg...) and have tried getting other cats in the past. He did accept a tabby female and got on pretty well with her, but not her brother so we decided it had to be a female. However the tabby had to go after 3 successful years of co-existence as we were told our second son was allergic/asthmatic and she refused to sleep anywhere but his bed.

So for the past few weeks we have been looking at available kittens on the web. Can you believe how much moggy/Heinz57 cats go for? Around £80!!! Crazy! If you are going to pay that kind of money it's better to get a pretty cat at least! Whilst searching we discovered the Bengal cat, how beautiful they are and how they are more dog-like than cat-like, are trainable, like water and often go for walks with you. Explains a LOT about Timmy, not least his leopard-print tummy, must be some Bengal in him somewhere down the line!

So began the Bengal kitten search. You can learn quite a lot via the web when feeling too ill to do anything else in the evenings..... and having decided what we were after we couldn't believe our luck - a breeder in Colchester had a litter with one exactly as we wanted! She is called Jasmine and will be joining us on 30th June, when 13 weeks old - vet checked, vax'd and insured. She is THE most beautiful little thing - pedigree name "Jasmine Topaz Tigerlily" if that's permitted. Has a certain "Je ne sais quoi?" to it I think?

Anyway, should stave off the mid-life crisis a while longer and give me something else to think about for a while. I always did need another baby when the youngest reached 3 years!!!

Friday, 1 May 2009

Bank Holiday ponderings...

So it's Bank Holiday Weekend and in time honoured tradition in our family this weekend is time to:-

1) Tell our parents we are going to Aldeburgh on Bank Holiday Monday. Cue very amusing reaction along the lines of "Not on a Bank Holiday, surely? It'll be so busy, you don't want to do that etc etc before they realise we say this every BH weekend to wind them up ;).........

2) Plan to get the garden ready for summer, (I say "plan" because you know it will rain.

3) Start dreaming up DIY projects which are a) largely unachievable in the time available or without rehoming all children in the house first and b) totally impractical but hey it was fun thinking about it.

4) Realise that yet again we will be missing out on a holiday abroad. Actually, a holiday at all would be nice. Problem is I don't actually think the word "holiday" is compatible with the word "parent" despite assurances to the contrary from the holiday industry...

5) Stare in disbelief at the calendar as the Summer Holidays loom large - surely they've only just gone back to school?

6) If it *is* sunny enjoy it because this will probably be it for summer 09!!!

Have fun!
Kate x

Friday, 24 April 2009

Do *not* move to Suffolk if you have a child on the Autism Spectrum...

It would seem the internal machinations of local Councils are as self-interested as ever :( ...certainly here in Suffolk!

Today we had a meeting to discuss where we were with H's education at his school. However it was one of those "meetings to publicly discuss what we have already discussed and agreed in private" which went against all evidence available to date on our son. His headteacher had called an Emergency Annual Statement Review last term, in January since "enough is enough", school weren't coping and neither was H. He was on a part-time timetable, learning next to nothing and still getting excluded. The team who work with children like H in mainstream schools (County Inclusive Resource) agreed all their usual strategies were not helping H cope any better and Health were supportive of the idea of an alternative to mainstream - particularly since there is no way he would cope in Middle School in two years time.

So, we went along with hopes that some (albeit slow) progress might be made. How wrong can you be! Apparently, all of a sudden he is making progress and in the space of a few weeks has gone from not being able to manage more than an hour or two in class (acc. to his teacher) to being ready to be reintegrated full-time. The head is no longer of the opinion there is an emergency of any kind and feels that despite the Statement offering no real change this is fine for school and H.

It all comes down to money of course. Call me a cynic but Special Schools of any kind cost a LOT. An awful lot - in fact the amount of a small mortgage each year! Almost no County will fund such places out of area for children under the age of 11. Of course, had our son been in a wheelchair it would be totally different but invisible disabilities provide convenient opportunities to save money rather than meet their (just as valid) needs. Suffolk has an appalling reputation currently for meeting the needs of ASD/ADHD children, as highlighted recently i n the East Anglian Daily Times. First they procrastinate over diagnosis, then tell you there is nothing further on offer to meet their needs.

So, let's hope the headteacher hasn't shot herself in the foot.... because she cannot exclude him easily now since she has told today's meeting things have dramatically improved and there is no need for consideration of alternatives. Her "Emergency" situation was fictitious it would seem, perhaps she was having a bad day - or maybe it was something to do with the deluge of parent complaints about H's behaviour, or the fact that children are leaving now and it is proving almost impossible to provide the Statutory support he requires because few will work with him in class. Whatever the reason she now has him back full time and will have to cope - or seriously lose face. And that, sadly, is what it's often about at the end of the day - at our children's expense.

Wednesday, 22 April 2009

Wow, he did it :)

I am writing this as H is still snoring. It's 7 am and I cannot emphasise how significant that is! For most of his 7+ years (and certainly the past 2) he has been up virtually EVERY morning by 5am. At the latest.

But yesterday he managed (and enjoyed) a FULL day of school, no "issues" and coped with packed lunch (well he sat there, didn't eat much but this is a good start) and played outside. That's probably the most he's done for six months, having become pretty reclusive  and attending part time.

I am grinning from ear to ear that he has achieved this, relatively un-bothered that his behaviour after school was enough to break the strongest person's patience/sanity and pleasantly shocked beyond belief that he came home and wanted to do more "work". :) :)

The cynic in me hopes this won't shoot down our hopes for increased support in flames but the Headteacher isn't daft and should hopefully back us up at our meeting on Friday.

He's awake now. Screaming already too, it would seem to be an essential corollary to opening his eyes. Ritalin at the ready.... Oh, and in case any of you thought I got off too lightly earlier, K was shouting (as only my daughter can) at 6.20am that she wanted to go to school. Now. lol....

Monday, 20 April 2009

School tomorrow!

Is it wrong to be gleefully anticipating H's return to school tomorrow? J goes Wednesday, as does K, then A Thursday (the twins do two mornings together and one each on their own). Don't get me wrong, we have had a fabulous holiday. I have taken the bull by the horns so to speak and taken all four out all over the county over the past few weeks and much fun has been had. Many stares, a few comments and way too much noise but LOTS of fun :) Life could never be said to be dull living with an Asperger/ADHD combination, it's the noise I can't take! OK, the noise and the aggression, but noise is what gets you noticed when you are out and about ;)

I digress.... we've had fun, and I am struggling with the guilt over desperately hoping tomorrow comes soon and, more to the point, continues until 3.25pm. Emails have been pinging back and forth over cyberspace today with requests that we reconsider returning H to full-time school, but quite honestly whilst we endorse the Local Education Authority's complete (and inexcusable) apathy by agreeing to babysit him every afternoon nothing will change. The inclusion officer who is supposed to be (actively) involved in all cases of reduced schooling has formally passed the buck and without tangible, "real" work sent home from school (as opposed to "learning" which is the only allowed alternative in his School's alternative nomenclature) H whiles away the afternoons on his Nintendo Ds. Or his laptop. On YouTube. It isn't exactly "learning" in my opinion and enough is enough. School have actually been great and done all they can to support H recently but they are as frustrated as we are by the LEA's ostrich-like approach.

The school's currently favoured system of names and terms is bizarre to say the least. I kind of get it. H, on the other hand, doesn't. He asked me the other day why he gets asked to "choose a good learning space" when what the teacher actually means is "sit on the carpet". The latter he understands. The word "homework" is not allowed either and "worksheet" is a four letter word. Most kids on the autism spectrum collect worksheets, LOVE Homework and need to have important papers to file. Learning needs to be formalised, laboured over and celebrated on A4 photocopied sheets. Then filed.

So tomorrow H returns full-time at our insistence, with Pokemon lunchbag (arrived this morning from the USA (THANK YOU EBAY!) and hamster-chewed sweatshirt. (The only one he will wear.) He's excited, pleased he's "allowed" back properly with his "friends" and keen to "work".... as opposed to "learn"! I hope he has a good day, I'll enjoy the relative quiet with only two at home whilst worrying all day whether we have done the right thing.....

Saturday, 18 April 2009

Easter Bunny or Gym Bunny?

It's that time of year. Every nook and cranny of the house has been sorted, tidied, threatened with eBay and smartened up. I don't know what it is with Spring but I was definitely born at the right time of year. As soon as the longer days and sunnier weather arrives my energy increases ten-fold, as does my enthusiasm to see beyond the mundane and essential. So, with the aforementioned seasonal changes having taken place I have been extremely busy.

We *were* going to move this year.
Having an extra bedroom would certainly shorten the prolonged playing, singing, shouting, procrastinating and sleep-fighting phase the twins currently inflict on us each and every night and might gain us a few more Z's in the morning! (Although this is by no means certain since it is difficult to ascertain who is most guilty of the early morning wake-up call, A or H . However since they are either side of a paper thin party wall differentiating is actually completely pointless, the resulting impact is the same.) We might gain some extra garden for the kids to run off their (seemingly endless) energy and some space between us and our nearest neighbours ( therefore reducing the complaints about the volume control H was born without) but my new-found energy doesn't extend that far. The stress of the last move seven years ago is still too fresh in my memory and I am none too keen to go there again. Yet.

So, having decided to stay put we have painted and re-carpeted the twins' room, planted up the garden for summer and ordered a new gate.

I have also re-joinde the gym. Getting fit is good but the real attraction is 50 minutes of "me" time with noone needing a wee/food/attention!!! I could spend MUCH longer in there ;) Trying not to become totally addicted but then given I need childcare to be able to go this is not likely. At all.

Friday, 17 April 2009

Joining the Bloggers!

Well since the world at large appears to be joining the ranks of the emerging blogging generation I have succumbed at last. Usually a prolific poster of various parenting forums this is entirely new to me but since I have a passion for writing and a basic need for a written outlet somewhere this might suit me down to the ground!

I am Kate, Mum to four. My eldest, J is just finishing primary school, H is 7 and has Asperger's Syndrome, ADHD and no doubt other issues but no further diagnoses would make our lives any easier. He is perhaps the reason this is entitled "musings of a SAHM" rather than "musings of a soon to return to at least part-time employment" Mum, since my younger two are soon to be at school for more sessions. Life with #2 son is never dull, it's VERY loud, spontaneous and stressful, fun crazy and totally insane at times. He is about to return to full-time education after 6 months part time attendance. Sadly this is not because this is most appropriate but after fighting the Local Authority for all tat time for an alternative we are forcing the issue.

Twins A and K are 3 (going 6 at least at times...) and great fun, very demanding and a delight. Various health issues but nothing which prevents them enjoying life to the full.

My other half whom I love with all my heart is an IT Director and is also married to his job. C'est la Vie I guess.

As well as trying to start this Blog I am trying to get a support forum up and running for parents and carer's of children with Gastro-oesophogeal Reflux. All my paternal family suffer/have suffered, all my children and the twins worst of all. It is an issue as close to my heart as Autism Awareness for which I am also campaigning. Visit http://refluxreflections.phpbb3now.com and if anyone knows someone who can help me promote this then ping me NOW!!!
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