Witty Name to Follow

More Sneezing

2011-10-18T09:50:00.007+01:00

Rena and Baxter had been married for less than a month before she pushed him off the side of a cliff.....

Hum - we have been married about the same length of time - perhaps this is not the best book to read and definitely calls for some skirting around the plot when Jol comes upstairs and asks me if the book is any good......

Life Support by Robert Whitlow is a book I have been sent to review by Book Sneeze

Despite his spectacular fall Baxter survives - but only just. This forms the story of the book. He is in a coma and paralysed from the neck down. His wife wants to 'end his suffering' whilst his (wealthy) father does not. They both have ulterior motives.

Rena employs Alexis Lindale as her lawyer. Alexis has her own sub-plots going on which include falling for a piano playing handyman pastor at a local church and finding God (on the same evening).

Whilst I found this book if not gripping but definitely a page turner and the cause of several late nights I thought the potential dilemma for Alexis of fighting to help Rena win the case to turn off her husband's life support against her newly found religious beliefs were not just not explored but practically ignored.

With only 2 pages to go Baxter was still lying unconscious and the family members were still at logger-heads. It was only on the last page it was revealed that this is just the first book of two!

I now have to hunt down the sequel to find out what happens - which I guess means it was a good first book!

I got this book free from Book Sneeze in exchange for writing this review. If anyone would like this book let me know and I'll pass it on to you.

Book Sneeze

2011-07-01T21:12:00.003+01:00

I like reading! I don't get much time during the day but have to read before turning the light off at night, even if it is only 10 minutes and even then sometimes I find myself unintentionally headbutting the book as sleep takes over.

So when I saw Tia's review of a book she was sent I thought it was a great idea and enrolled with Book Sneeze. The book I chose was The Final Summit by Andy Andrews.

Unfortunately I managed to choose a sequel but luckily the author gave a brief resume in the first chapter. The main character, David Ponder, is it seems a time traveller and is now a successful business man. He is visited by the (Arch)angel Gabriel (if you read the book you will discover the relevance of the brackets!) who tells him he must chair a summit in which various famous people from history must discover the key phrase to save humanity.

The strength of this book was the interaction between the characters - you had Winston Churchill, Anne Frank, King David and Abraham Lincoln (amongst others) sitting around a table debating not just the subject matter - but also winding each other up in places. At times it was a bit predictable eg the suggestions for saving humanity were the usual compassion, hope etc but the final answer was an interesting twist.

The author is described on the blurb on the back as being a motivational speaker. Although I enjoyed the book and will look out for the prequel, I wouldn't describe it as a life changing read and something that I will look back on and thumb through the pages again when I need inspiration or direction.

In the spirit of book sneeze I'm giving this book to the first person puts a comment that they would like it!

Catch up!

2011-04-18T07:32:00.005+01:00

Its been 3 months since I updated. Partly because it seemed the things I blog about are things that the people who read this blog know about anyway so seemed a bit repetitive! But a couple of friends have started their blogs (again) so thought I would give this one another go!

Life here has been going on ok. Have been trying to get into the habit of hoisting Matthew. Luckily he seems to like swinging around even if by the time I get the sling under his bum and all attached my back is aching more than the quick 'snatch and grab' lifting technique! One problem that has materialised - although he doesn't extend in the classic cp sense - Mr Nosey does like to know what is going on so if, mid-hoist, he hears something going on behind him he turns his head round which results in the sling sliding down and his head falling 'off'. The OT has looked at it and suggested a few solutions and is arranging for a sling rep to come and see it but I think like many others we are embarking on the search for 'the perfect sling'.

Jack is doing well and very pleased he has grown a whole inch since November. He has been on a cubs "Indiana Jones Adventure Camp" and is going away with school next month doing outdoor activity type of things. (When I can drag him away from his DS that is - he is rapidly becoming a Super Mario addict - and usage is now being severely monitored!)

Wilf is now 10 months old which in doggie terms translates to being a stroppy hormonal teenager. Lovely one minute but pushing the boundaries and testing our patience the next. We have have been to dog training classes with him where he did well despite being wound up/and winding up Ted a Jack Russell puppy with a similar attitude. (He was put in the naughty corner one week but the less said about that the better!)

In the last year I have become involved in an initiative called Learning to Change. The idea being that parents and carers with disabled children and the government talk to each other and improve the lives of said parents. That's the theory anyway! As with most things it has taken time to find its feet and there have been meetings that seem on occasions to be for the sake of meetings but generally the feeling is positive. So much so that Cumbria was awarded a large chunk of money to spend on various projects. I got involved in helping to buy some special needs trikes, off road buggies and go-karts that locals can borrow or use on a soon to be created cycle/wheelchair path on the recently named "Aiming High Field" at any activity centre called Bendrigg Lodge near Kendal.

This co-incided with a biannual Learning to Change conference so had to give a short presentation on this and the other projects that received money. For someone who was so good at avoiding reading out loud at school that at age 15 the English teacher asked me if I had trouble reading this was definitely pushing my comfort zone - but I survived so guess pushing those boundaries at times is a good thing (but preferably not too often please!)

We have just got back from a trip to the Calvert Trust at Kielder with a group from Special Kids in the UK. This is an activity centre for disabled people. We went last year and had a great time. All activities are accessible to all people no matter the disability. Matthew seemed to have a great week, spending most of the time laughing and grinning and enjoyed just being around everyone and being a spectator during sailing, having an off road buggy ride and going in the hydro pool. He didn't do any of the most adventurous activities as I felt he would not have gained anything from being swung 50ft up in the air from the King Swing (unlike his brother who loved it and whizzed up the climbing wall and almost through a hole in the ceiling and up onto the roof!) but if he/we had wanted him to take part there were harnesses, straps and supports and plenty of encouraging instructors to make it possible.

Next update - in 3 months (or hopefully less)

where did that come from?!

2011-01-14T12:32:00.002Z

The last time I heard this song I was probably sitting crossed-legged in a school hall somewhere in north west London. For some reason it came into my head a couple of weeks ago. After a couple of days of the only 2 lines I could remember bouncing around my brain I downloaded it. Since then it seems to be everywhere* - first I heard it on Radio 4's The Archers (Nigel's funeral) and then again on Radio 4's Desert Island Discs (one of Gyles Brandreth's selection!)

So, if the last time you heard it was also in an assembly long ago,press play, turn it up, listen with headphones or surround sound and wait for the huge church organ to kick in - will blow your (long white) socks off!!

*slight exaggeration for poetic licence(!)

Because I like it!

2010-11-08T23:15:00.002Z

Finally

2010-10-25T10:37:00.009+01:00

6 years after the subject was first raised, rainforests (electronic and virtual) of letters and emails and memos and plans and phonecalls, Matthew spent his first night in his new bedroom this week.

There are a few teething problems which hopefully will be sorted out including the changing table above the bath being put in, yes above the bath, but 4 inches above the bath so too high for me to comfortably use (but perfect height for at least one of our carers - she has now been told she is not allowed to leave!) Luckily this was solved with a stool knocked up by Jol the (bodge it as he puts it) builder in under an hour!

The temporary storage box under the bed became very temporary and a trip to buy some plastic drawers was made after Wilf was seen running around carrying socks and vests and t-shirts etc around - thieved from his new found treasure trove!

Matthew has been waking a bit more in the night, but that may be due to the fact he is in a different room with different noises, now lying on his left hand side rather than his right, is facing a different compass direction, and of course just because he is. Hopefully he will settle into his new room and at least it gave us a chance to discover the baby monitor last used 7+ years ago still works!

The OT came out this week to officially show us how to use the hoists and slings but Jack (I am Matthew's stunt double)

had a sneaky practice run before Matthew (I do all my own stunts) had a try

The ramp which was made so the foundations could be dug lower and so allowed the room to be slightly larger (all to do with roof angles etc) has provided an extra source of amusement too.....*

*unfortunately I didn't get to record Wilf pulling Matthew down it by his sock!

Our summer - and other animals*

2010-09-04T09:51:00.009+01:00

* with apologies to friends in the pictures who most certainly are not animals (at least not most of the time!)

Wilf!

2010-08-04T20:43:00.005+01:00

We collected Wilf on Sunday so far we have discovered Wilf likes to chew.......

sticks.......

his toy chewy bone.......

the cat's tail......

Matthew's ear lobe.....

Matthew's fingers (espcially if they have weetabix on them)......

rugs.....

newspaper.....

empty cereal boxes.....

plastic garden chairs.....

straps hanging down from Matthew's wheelchair.....

the metal frame of Matthew's wheelchair......

grass.....

his toy dog.....

He also seems to like the slide

In other words life is full on at the moment. Give me premature twin babies with special needs any day - they were a breeze in comparison!

But thankfully he does sleep (sometimes)

New addition

2010-07-11T21:25:00.006+01:00

When Jos had to be put down earlier this year he left, as expected, a huge gap. The cats went someway to fill that gap - especially Pepper who having been brought up with dogs is more dog than cat somedays. What other cat comes when called, goes for walks with you, scrounges for food etc.

We knew we would get another dog at some point and just assumed it would be another rescue dog and possibly not another border collie and possibly a bitch this time but not just yet.....

A couple of weeks ago an acquaintance asked if we were still looking for a dog. Her friend, some farmers, had a collie puppy looking for a home. It turns out mum is an older mother - a 10 year old working dog who got together with the collie dog next door......

The owners didn't want any pups so the dog had an injection to terminate the pregnancy - it didn't work so she had the jab again - that didn't work either and she ended up having 2 pups!

They decided to keep one to train up to help on the farm and so the boy needed a home.....

I had always thought the right dog would find us - so even though we were anticipating a grown up female non-collie this one felt right. In a strange parallel with Matthew, who at 6 weeks was given a doom and gloom prognosis, and we were warned to be ready to think about withdrawing care and then in the course of 48 hours did an amazing u-turn, both pup and Matthew wanted to be/stay alive.

We went to see the pup yesterday who we have decided to call Wilf.

Like all puppies he is very cute! A bit smaller and more wobbly on his legs than his 'big' sister but at only 5 weeks he was doing well running around the garden and happy to play with Jack who seemed to get over his fear of puppies jumping up at him!

Going to arrange to collect him in the next few weeks so in the meantime have to get into the habit of putting anything chewable above puppy level!

Watch out cats......!

Bathtime fun

2010-06-20T23:26:00.002+01:00

Matthew enjoys his bath, but the one thing he enjoys more is a bath with Jack - cue lots of squeals, giggles, manic leg pumping, that sort of thing and he isn't too bothered if he goes under in the process.

He has a bath aid called the Bea Lift. It is like a deckchair that rest on the edge of the bath and he is lowered in. It's not ideal, but just about works for us.

I wasn't planning on bathing Matthew this evening but one look at the state of him (thanks to a new milk to try and fatten him up a bit) soon changed things. So, 10 minutes later Matthew is looking and smelling a lot cleaner, has had a play and a giggle and I am just about to get him out and ready for bed. Just as Jack comes running up the stairs, stripping off saying 'don't get out Matthew I want to get in with you....'! (How can you say no to such a request?!)

The next 5 minutes are filled with manic laughter from both of them until Matthew turns his head a bit too far in one direction and swallows a mouthful of water as he carries on laughing - the next second Matthew is sick and the bath is full of recently eaten pudding!

Suddenly things are not so funny for Jack who tries to get out as quickly as possible. Meanwhile Matthew, having got his breath back, is still laughing his head off and can't see what all the fuss is about!

I lift the Bea Lift up so he is resting on the top of the bath, pull the plug out and start getting some clean water into the jug to wash him off. Unfortunately the Bea lift is made of netting so the bits (hope you're not eating!) just get washed from Matthew's front onto his back.

I tell Jack to go and get dad to help who comes up and while I hold Matthew face down over the bath, Jol pours more water over a now hysterical Matthew who thinks this is a great bathtime adventure!

Matthew, now clean(ish) is wrapped up in a towel as we realised the water is not going down - yep victoria sponge and custard have now blocked up the plug hole.... so Jol gallantly delves down into the murk and unblocks it and cleans the bath.

Jack, having been away with Beavers for the night and therefore filthy needs to be cleaned by one method or another. He is told to have a shower which he tries to do without his feed touching the bath as 'I don't want Matthew's sick on my feet' to which he is told (a) the bath is probably cleaner than usual (b) better your brother's sick then a stranger's and (c) technically it probably wasn't in Matthew's stomach long enough to warrant being called sick as it came up exactly as it went down! In other words just get on with it!!

There was a worry that Matthew had lost his evening meds, including the one that helps him get to sleep, but luckily he went to sleep surprisingly quickly this evening proving (cue group groan at bad joke) that laughter is the best medicine!! (sorry!)

101 uses for a wav*

2010-06-20T10:58:00.006+01:00

Transporting floor tiles from Scunthorpe - they turned out to be a lot heavier than anticipated so the lowered floor became a lot lower for the return trip.

Bringing back an 18ft trampoline from Enfield (along with 2 children, one wheelchair, one granddad and a weeknd's worth of baggage - now that was interesting packing!)

Collecting a wardrobe from Cartmel

Place needing investigation by next door's dog (who didn't bother using the ramp!)

Allowing a car-hating, stiff-hipped dog to get in easily without jumping up and then travel in his bed!

Good ramp for Jack and his friends on a scooter!

Fetching and carrying the lawn mower to/from the repair shop (multiple visits!)

Floor, with a bit of padding, acts as a good changing area when out and about.....

.......and of course travel for Matthew who especially enjoys the hump-backed bridges when I forget to put the anti-tips on!

Matthew's new bedroom - the story so far....

2010-06-09T12:59:00.010+01:00

After the best part of 6 years in the planning stage it is going up surprisingly quickly......

Thought we'd treat ourselves to a new shed too.....

Matthew's new bathroom

2010-05-06T08:44:00.007+01:00

Scene: Our house

Time: 8.45 am last Monday morning

I glance out of the window as I tell Jack '5 minutes...' to see a van pull up in the drive. Cue yell to Jol that the builders (for Matthew's downstairs bathroom) are (unexpectedly) here.

Run downstairs and ask the builder if he had come to measure up as we were told they would be doing a site visit once the bath had been ordered before arranging a start date.

Builder says no he (and his mates all 3 of them who are 5 minutes behind him) are here to start work!!!

Said builder looks slightly worried when I tell him we were not expecting him and that the room had not been emptied. He then hurriedly consults his papers to check he should not be somewhere else but no he has the right name address and date - just a shame we weren't in on the information!

As it has taken best part of 5 years to get this far we were not going to let him off the premises. I had to take Jack to school and then head off for work so left Jol to it.

Thankfully the builders came up trumps and not only helped empty the room but in the space of four and half days converted this

into this

A few finishing touches are needed, including a spring board if anyone other than Matthew wants to use the bath as it has been put on a plinth so it is the right height for me when the changing table is put in. As there isn't a curtain up so anyone using the bath would be in full view of any passing cow or sheep that isn't an urgent need (although might be fun!) In the meantime we are enjoying being a 2 loo household!

You know the phrase.....

2010-04-16T09:47:00.007+01:00

....becoming one with nature?

Well think our shed is taking it too literally!

Busy weekend ahead - said shed is to be converted into this.......

and this.........

has to be emptied because........

we finally have a date for the builder to come and start work on Matthew's downstairs bedroom and bathroom!!

I might be some time......!

Numb bums

2010-04-12T10:25:00.007+01:00

Not us but the 500 or so cyclists that were taking part in The Lakeland Loop yesterday - a 100 miles cycle ride around the Lake District. Which included the infamous Hardknott and Wrynose Passes (one of the steepest roads in England - gradient 1:3 in many places). And instant disqualification if you get off and push!!*

Our role was to dole out cups of tea, slices of flapjack and gingerbread, fill up water bottles and direct to the toilet(!) as the riders came to the second pit stop 52 miles in.

The event was run by Epic Events and Special Kids In the UK were their nominated charity - hence our being there.

It was busy and chaotic and tiring but fun!! Jack did very well as a trainee mugger waving the Special Kids collection pots at all the contestants. Unfortuantely I don't think he did too well as lycra shorts don't seem to have many pockets, but several contestants promised to put some money into other pots if when got to the end.

The riders were a happy if tired bunch and had enough energy for a thanks and hello to Jack and Matthew as they raced through - one even stopped to have a chat to Matthew and read his communication passport on his wheelchair.

Well done and thank you to everyone who took part - you have my utmost respect!

*I have just found out the first cyclist finished the 100 mile course in 3 hours 43 minutes!

Does the Tooth Fairy have Sat Nav?!*

2010-04-08T20:09:00.006+01:00

This was Jack's main concern when he lost not one tooth but two while we were away with friends at the Calvert Trust in Kielder in Northumberland just on the Scottish boarders.

The Calvert Trust provides outdoor activities for disabled people and their families. The attitude is definitely one of inclusion and they had a great assortment of straps and harnesses and ideas to allow wheelchair users to experience zip-wire, canoeing, archery, in fact anything anyone else experiences.

Despite the weather, everything from horizontal blizzards, rain, brief moments of sunshine and even a sudden hailstorm (due, we decided, to one of Matthew's archery arrows going off into orbit and piercing a cloud!) did not stop everyone having a good time.

The kids, whatever there dis/ability or age come to think of it(!) were encouraged and helped to do a wide variety of activities alongside lots of laughter and sense of achievement.

The highlight (for Jack anyway) was something called the king swing. As its name suggests it was a giant swing - strapped in to an inch of your life - you are then hauled up 30ft and then let go......... if you have never heard a grown man scream put him in a king swing.....! Jack loved it!! The only trouble is now he has put one on his Christmas list!

For me, apart from having a great time with good friends, the highlight was seeing him climbing up the climbing wall with no help - other than verbal encouragement - and seeing his grin at the end of it

Matthew...... well think he had a good time too

*Thankfully it seems the tooth fairy is fully equipped with 21st century technology and so the week was financially a good one too!

Inclusion (for inclusions sake?)

2010-03-22T13:06:00.009Z

We have just got back from an enjoyable weekend at Keppelwray near us. A weekend of doing outdoor activities with disabled children and their families. There was a mixture of physically disabled, autism, learning difficulties, so the leaders, to quote a well worn phrase, had their hands full!

As ever safety considerations were taken very seriously......

Jack, I think, benefited most from weekend, being able to do things like tree climbing, abseiling,

archery and canoeing - where Matthew was the cox......

The final afternoon was team challenge where we and another family had to work together to solve challenges (or in our cases work together to cheat to solve challenges!)

Jack said his favourite challenge was doing roly-polys down a 100 yard netting hammock - he was meant to be walking along the rope - the netting being a safety net for anyone falling. Having done the course both ways I think his way was more fun!

Matthew was given the opportunity to take part in this, by being pulled around the course on a large plastic sheet, but we decided sometimes inclusion is just for inclusions sake ~~and as he had just had a liquid lunch~~ he seemed happy enough to stay and look after the coats!

Whilst we all (hopefully) had fun I'm not sure what Matthew made of being hauled 20 foot up a tree and swung around before coming back down again or the how wise it was to give a severely autistic and very mobile child a powerful bow and arrow but you have to admire the centre's attitude of total inclusivity (I think!)

And yes I do realise I am contradicting myself nicely!!

Goodbye Jos

2010-03-19T11:45:00.006Z

The deed has been done.... he has had his final trip to the vet's.

It was time, a few sideways steps and then collapsing and woofing at your dinner bowl is not a dignified end for any self-respecting collie dog!

As predicted the house feels very empty at the moment. Am sure, once he wakes up, Pepper, the cat lodger, is going to miss him - he was always rubbing up against Jos purring, and even walking under his legs - a bit of a risky move recently when Jos was a bit wobbly on his legs!

Am sure it won't be too long before another woof enters our lives (especially if a certain couple of friends who keep sending email links to (usually sn!) dogs needing homes have anything to do with it!)

But in the meantime, good bye loopy, you certainly lived up to your nick name the last few months!

Click Me!

2010-02-24T11:56:00.002Z

Jos

2010-02-15T15:47:00.003Z

Remember him? That dog has more lives than a lucky cat! He has bad arthritis/spinal damage and hasn't been ableto walk very far for the last few months. This weekend he seemed to go downhill rapidly and couldn't even make it to the end if the drive and more worryingly didn't seem to want to (this from a dog who would choose walk over food every time). He didn't seem to have much control over his bowels and whoever came down first in the morning would have to watch where they put their feet.......

We both knew what had to be done but neither wanted to do it - playing pass the parcel with the phone for most of the morning. In the end I made the appointment at the vet's. The appointment wasn't until the end of the day so much of the day was spent clock watching and avoiding looking Jos in the eye who seemed to be looking at us accusingly. As the appointment clashed with dinner time for the kids, Jol got the short straw and took him while I explained to Jack that Jos might not be coming back - and trying not to use the phrase 'being put to sleep' for obvious reasons as it was nearly bedtime.

An hour later and Jol comes back.............. with Jos!!!

The vet gave him a brief once over and suggested another steroid jab and see how he got on.

Well whatever was in the jab seems to be helping, whilst this morning he is not bounding around he has had a waddle around the garden and has only fallen over once so it looks like that he has been given a reprieve - just hope our emotions can recover after yesterday!

2 boys - 2 birthdays!

2010-02-07T22:06:00.004Z

8 years ago 2 (very) little boys put in an early appearance (92 days early to be exact!)

8 years later it is party time......!

For the first time their birthday co-incides with a weekend that Matthew is at school and for the first time, Duckys, the local children's farm, is open in February. Jack loves the soft play area - especially the slide (doesn't give the animals a second look!) so a 2 party birthday weekend was planned - Ducky's on Saturday and school birthday tea on Sunday.

After lots of crossings out an invitation list was produced and invitations duly written and given out including one that had the addendum '... only if you don't give me Chinese burns on my birthday'! (that one was addressed to T!)

Party number one went well - kids working up a sweat and appetite in the soft play and then chasing one of the new animals - a turkey who was rescued a couple of months ago and now seems to want to be everyone's friend - unfortunately the feeling wasn't mutual amongst this group!

Ben 10 birthday flares (candles are for wimps!) went down well too....!

Another day, another party. This time Matthew's turn (although according to Jack it was his party too!)

Matthew was a little weary - turns out it was winter olympic weekend and he had taken part in the cycling, swimming, curling, hockey and had won a few medals in the process! He soon cheered up at the prospect of opening a few presents and playing the timeless classic bash a helium balloon with his brother!

Likewise Jack was more than happy to be on the receiving end of yet more Ben 10 presents and help blow out the candles on the birthday cake (which he made them light twice once for him and once for Matthew!)

After the cake was demolished there was just time to witness the closing ceremony for the olympics which involved chinese lanterns being lit and sent off across the Bay.

(~~and we wont mention a certain some one lighting his cigarette from the flame just before it sailed up into the night sky!~~)

A goodbye kiss for one birthday boy who was taken upstairs for bath, massage and one of his new books for bedtime story. The other birthday boy was taken home and likewise tucked into bed (without the massage) with the reassurance that age doesn't matter after a brief bottom lip wobble about how he like being 7 and didn't want to be 8!

Haiti - I have, have you?

2010-01-18T22:01:00.008Z

http://www.dec.org.uk/donate_now/

Just giving - Bloggers for Haiti

Unicef

plan-international

or countless other ways

14th January 2010

2010-01-14T09:39:00.010Z

Woke up to this

this morning and like the rest of the country - yes it is very pretty, but getting very bored with it all now. Managed to get Jack to school and slide back - living on an unmade road aka pot-holed filled track does make for interesting driving!

Home again and literally had to push the dog outside. I know arthriticy legs and snow do not mix but a bladder can only hold so much........

A combination of post-Christmas recession and the weather meant that I only had one person I was meant to see today and they were more than happy (as was I) to post-pone until next week.

First job was to fill all the water bottles, do the washing and have a bath! Last week we had no water for 4 days when the tank froze up. They have hopefully sorted the problem so it won't happen again but I wasn't taking any chances!

A couple of hours later and my head is about to go ping - trying to sort out accounts and then the post arrives and our elation from yesterday is short lived when we discover optional extras such as a ramp and plumbing seemingly do not qualify for the grant! A few expletives later and an email or two fired off - their reasoning should make for interesting reading!

Take a phone call from Matthew's school. They always start by saying 'hi, it's C from Bleasdale - Matthew is fine....' reminds me of when they were in intensive care as babies - the hospital staff had the same greeting!

It seems Matthew has made a bit of a mess of his finger - he does sometimes bite it, but usually lets go very quickly as he gets a serious bottom lip wobble and yells in pain. This time they said he didn't let go and seemed a bit unresponsive - they wondered if he had a seizure......

We then debated the placebo effects of his chloral hydrate (a medicine he has to help him sleep). After 3 weeks at home they were anticipating a couple of restless nights when he first went back (and we have discovered he doesn't 'do' Mondays(!) C told me they had to give him some extra chloral on both Monday and Tuesday nights. On Wednesday when he woke up in the early hours the nurse on duty said 'here you are Matthew, have some more chloral, that will help you sleep', she then lifted up his pyjama top and moved his gastrostomy button around a little before tucking him up again.......15 minutes later he was asleep!!

By the time it is school kicking out time the snow has mostly turned to slush. We are delayed by the toy library and return with a k'nex set despite having at least 3 k'nex sets at home - but this is different (apparently!)

Return one of next door's puppies to his home - they have a gate to keep the dogs in but this puppy has learnt to squeeze underneath - luckily it is a tight squeeze and at the rate he is growing should only be a temporary problem ~~unfortunately as he he is very cute and just wants to be friends with everyone!~~

Was meant to be going to a meeting about the financial crisis currently affecting the local Beavers/Cubs/Scouts group but thankfully found out it has been postponed because of the weather so was able to put my slippers on forget about life outside for the evening.

Bedtime for Jack and we snuggled up to read the latest chapter and find out how Hiccup Horrendous Haddock III manages to escape from the latest fix he has found himself in (we are nearly at the end of the last book in the series - to the regret of both of us!)

So that's it, a day in the life for the last 12 months - sometimes mundane, sometimes not, like life I suppose!

Good News Day

2010-01-13T09:45:00.006Z

Today (well yesterday now) was good news day here.

We received an email from our OT (Occupational Therapist) with 5 words that will change our lives - make it more chaotic short-term, but in the long run make life much easier for all of us.

Those words - the DFG has been approved!

It has taken 5 years to get this far so we are not celebrating too much just yet and given this house is an old stone building it is bound to throw up some challenges along the way - but hey we are off the starting blocks!! It means that hopefully in the next 12 months this

will become a downstairs bedroom for Matthew and this

will become a downstairs bathroom for him. Both will be on the small side, especially the bathroom but it will be downstairs and so save a lot of the lifting involved with his day to day care.

The cat will have to learn not to be so lazy though!

England's green and pleasant land?

2010-01-09T12:38:00.012Z

Quite an amazing site!! The picture was taken last week by Nasa's Terra satellite. Think you can just about make out a bit of Ireland that isn't covered in snow!

Whilst the snow is very pretty etc and much fun has been had

it has had its downsides - apart from the obvious of not being able to get out to get to work (not good when you are self-employed), panic buying of bread and milk etc in the shops when you can get out to them (despite the fact most people have enough food in the cupboards to last them 6 months even if the last month or two may consist of meals which might be a bit 'unusual' ! It has also meant the oil tanker that was meant to deliver the fuel for our central heating last week was not able to get through - we have been using the heating very sparingly and thankfully the dregs in the bottom of the tank have lasted. The parable of the oil in the candle in the temple comes to mind*

Luckily we have a log burner and so that has been in almost full time use. Thankfully a tanker got through this morning - not ours but delivering to our neighbours who were in a similar position so we managed to get some fuel off them. Now we just need someone at the original company to answer the phone/email so we can cancel the original order otherwise to continue the biblical theme - our cup (read tank) will runneth over (as will the credit card!)

Just to add to the sense of adventure the water tank supplying our house froze solid 3 nights ago and looks to remain that way until the thaw which depending on which weather forecast you look at is as the earliest 2 weeks away. We are able to get water from the nearby farm for drinking and cooking but washing and bathing is somewhat tricky not to mention smelly!

Luckily others in the house do not seem too bothered by the current situation!

*I'm sure someone with a better biblical knowledge than mine will correct any errors!

whoops nearly missed it!

2010-01-01T12:11:00.004Z

New Year that is - twice!!

We finally escaped from our ice confinement 3 days ago to collect grand-dad who was coming up for New Year from the station. Although our little patch was still quite icy and slippery the rest of the world seemed to have had a complete thaw.

Christmas provisions were delivered to a friend's house who lives on a main road curtesy of Tesco and our friendly neighbourhood butcher (thanks M!). So Christmas Eve Jol skated round and collected our goodies so Christmas dinner was not beans on toast (much to Jack's annoyance as he decided he didn't like turkey!).

Grand-dad kindly offered to babysit on New Years Eve so once the small creatures were finally sleep (why do they know when you are going out?!) we went over to (above mentioned) friends house.

We ended up playing shove ha'penny with bottle tops on the kitchen table. It was getting serious with some dodgy tactic being put into place - some successfully pushing others out the way and others less so when we suddenly realised it was 11.55pm - according to the kitchen clock anyway! Various wrist watches were consulted and we decided to go with an average!

Champagne was opened and poured out in readiness and then Z - the friend's son - rushed off to get a raisin to drop into his glass after I told him about the bubbles in the champagne making the raisin lift up to the top of the glass....... that was the theory anyway! We all watched the static raisin - bubbles were attaching to it and a couple of us thought we saw it move slightly - but it stayed firmly attached to the bottom of the glass! Maybe the glass of champagne Z was given was too small and/or the raisin too large - whatever the reason we abandoned the experiment, decided it was now 2010, and drank to the new year!

We then had a relaxing hour or so while G got out his guitar and sang along to everything from Pink Floyd to Rolf Harris to The Pogues with a strange song about chipmunks chucked in too for good measure!

Home in the early hours to find grand-dad still up but thankfully the children had remained sounds asleep.... until 5 minutes after we had gone to bed when Matthew decided to wake up......

Happy new year all!

snowed in - day 3!

2009-12-22T16:52:00.006Z

Or should that be iced-in?

We live a mile from the road and that mile includes a couple of little hills - the sort you don't notice in the car but certainly do by bike - or if it has snowed!

The neighbours have been out in their 4x4 and said they were skidding so my lowered floor wheelchair adapted car stood no chance! They kindly picked up essentials for us when they were out - milk, bread and cat food!

Needless to say work had to be cancelled which was just as well as our carer could not get out of her drive let alone to us. Jack and I decided to go out and explore..... Pepper came with us briefly - his camouflage wasn't quite so effective as usual this weather and he soon decided to go back in!

Unfortunately the olive tree did not look too good.......

The weight of the snow had made the trampoline sag. It held Jack's weight ok while he had a few bounces but I decided not to chance my luck......!

We then headed towards one the hills and found the tyre tracks from the neighbour's car had frozen over night so the sledge slide well down the hill......

One good thing about living in a village/where everybody knows your ~~business~~ name is that our turkey, due to be collected from the shop on Thursday is now being delivered by the butcher to some friends who will plan to meet on foot and will be paid for in the new year. As the butcher said - I know where to find you (at the school gates along with him waiting for his son to come out of the same classroom as Jack!) and besides, we are not going anywhere this weather!

Plan for tomorrow is to how to fit a tumble form onto the sledge and give Matthew an experience - watch this space.....! (Hopefully it won't end up like this)

Few more snow pics here! blog photo thingy playing up!!

day in the Life (again!)

2009-12-14T14:25:00.005Z

Penultimate blog day of the month and the morning was spent in what felt like a manic rush of general day to day jobs interspersed with wrapping up the last few presents, signing cards ~~and forging Matthew's name~~. Also adding to the ever growing pile of presents waiting for the boys kindly sent/delivered by other people - think/hope there might be one for me buried somewhere deep under them all!

Brief interlude at midday to go to the dentist to replace a 30 year old filing which wasn't given me any trouble until last week when the dentist pointed out its decrepit state and suggested it might be wise to replace it before it did start to give trouble. Our dentist is very gentle (and cheap as he is still treating NHS patients!) and takes unusual holidays, going out to somewhere in the Amazon to treat Amazonian teeth.

Came home for lunch and did briefly wonder if I needed to borrow one of Matthew's bibs but managed to slurp some warm coffee and eat some of the leftovers from the special kids party yesterday (we know how to ~~over~~ cater!)

Was saved from throwing the computer out of the window when it wouldn't load my photos from yesterday for the 3rd time by the phone ringing - Jack's headmaster to say that computer club had been cancelled (shame I could have sneaked in and tried to find out what was going wrong!) and coould I come and ~~rescue him from Jack demonstrating he knew all the words to the school Christmas production~~ collect Jack.

This evening was a meal out with some work colleagues. We had to order in advance what we wanted (I hate having to do that!) I had anticipated potential dental malfunction and so opted for the fish stew.

Had a chuckle at the 'jokes' inside the crackers - 'ealth (or should it be elf given the time of year) and safety gone mad - cracker should not be pulled within 10 ft of anyone with a sense of humour, the jokes must be read out to someone aged 7 or under to fully appreciate the subtitles of them etc

Meal with fun and the company entertaining, esp the contents of one of my colleagues handbags but won't go into that on here.....

Then home to a cat irate that we had gone out and the babysitter had not fed him (wonder how she survived the mieowing and constant midering - must ask her the secret!) so fed the cats for what felt like the 12th today and went to bed......

Calendar boy

2009-12-09T21:09:00.004Z

We usually have a calendar from the hospice that Matthew goes to for respite. The 2010 edition arrived today. I was surprised to see this on September's page

I didn't know they were using Matthew's picture in the calendar, come to think of it I didn't know he had even done the picture! He's good at colouring isn't he?!! Although as a friend pointed out his choice of fashion colours for the boots does leave something to be desired!

Without wanting to sound ungrateful to a place that does a lot of good, what part exactly did Matthew play in colouring the picture? Other months were similar although on some you could see evidence of a child being involved - spiders made from hand prints, soldiers from thumbs smeared down the page, that sort of thing. It's almost like pretending to be disabled a la Little Britain's Lou and Andy .

And how does the carer who was with him feel about his/her efforts being plagerised?!

The thing is, if the picture had had a few more visible signs of Matthew being involved in its production we probably would have bought several more copies of the calendar. Think the hospice need a tactful reminder of it's not the winning (or in this case the colouring) that is important but the taking part.

Can a child be too disability aware?

2009-11-28T20:59:00.003Z

Jack (aged 7) was playing with a toy figure today which wouldn't stand up. He said, 'why, is she disabled?'

I then started thinking about other things that he has said and done which your average 7 year old would not say/do/know of:-

A while ago he built a lego house complete with wheelchair ramp

His bath toys include a 60ml syringe

He knows how to strap a wheelchair into a wav (he know what wav stands for too*!)

On seeing a child in a wheelchair he made a comment about the type of wheelchair - and come to think of it he knows his Panthers from his Crocodiles too!

He knows various hospitals by what toys they have in the waiting room and is on first name terms with many consultants

On describing his (disabled) brother 'he's that boy over there in the green coat' - not he is the one in the wheelchair (although should that come under the disability unaware category?!)

He knows what a gastrostomy is and how to use one!

He knows which medicine is which, what it does, the correct dosage and has even been known to query it if one looks wrong (he was right too!)

He also knows he can always get a lift if he gets tired.......!

*wheelchair accessible vehicle for those of you who don't!

14th November - it's that time again!

2009-11-14T16:25:00.011Z

The day starts at a respectable time despite Matthew wanting to start it around 12.o5am!

As usual he awoke with a hairdo that many a punk in the 80's would have spent hours in front of the bathroom mirror trying to achieve!

After breakfast Jack busied himself with a wish list (for any family/friends that may be reading!!)

Not only are Christmas and birthday fast approaching but yesterday he had a (small) win on the premium bonds. Both he and Matthew have now had wins despite only holding a few bonds for a few years (unlike me who has had some since I was small and as yet not won, but daren't cash them in on the 'what if' principle!)

After lunch we did some cooking - Jack had a flick through the book and decided he wanted to make snowman meringues. There was just about some mixture left in the bowl....

Unfortunately we cooked them 10 minutes too long and the mixture did spread out a bit too much but apparently they tasted good!*

Matthew enjoyed it too although it was then I noticed the tooth he bashed the other week had now gone a slightly darker colour (think weetabix colour - in fact that was what I thought it was at first!) But thankfully it is a (now) wobbly milk tooth and with perfect timing the special needs dentist is visiting school next week so have put a note in Matthew's home school diary for it to be looked at.

Tea was a decorative affair - apparently it's a monkey!!

We were going to go out tonight to see a friend's band play but unfortunately it was a last minute arrangement and our normal babysitters had already arranged their social lives! Never mind given the weather, whilst not as bad as the south of the country, is not exactly balmy (or even dry) we decided to open a posh bottle of wine that we had bought back from Sardinia last year for a special occasion!

Cheers!

*Since they were 90% sugar and Jack's nickname is flyboy this was not a great surprise!

Should we wrap them up in cotton wool?

2009-11-02T10:26:00.003Z

Last week was half term week. I took the boys down to my mum's for the week. The weather was good and we had a busy week. On Saturday (Hallowe'en) we went over to my brother's family and took the boys out Trick or Treating (Jack was a pumpkin and Matthew a skeleton!)

Unfortunately at the second house Matthew fell off a kerb. The trouble is, unlike other 7 year olds Matthew cannot put his hands out to save himself and most other 7 year olds do not end up with a wheelchair (and their mother) lying on top of them in a (thankfully) quiet road.

Although the injuries (grazed forehead, black eye, cut and swollen lip, loose tooth and two bruised knees) looked bad and Matthew (and I) were in an understandable state of shock they were thankfully superficial and looked worse than they were -probably in part due to the black and white face paint now smeared around his face.

Another difference between Matthew and other 7 year olds is that he cannot tell us where something hurts, (but on this occasion we were able to hazard a guess). The only thing my sister in law could find was a hangover remedy which contained dissolvable paracetamol so we then had a surreal 5 minutes trying to work out what the correct dose would be for an underweight 7 year old (understandably it didn't give child doses on the back of the packet!)

24 hours later and the swelling has gone down, the bruising has come out and I have also found my own injuries from the incident and a couple on his wheelchair too! A couple of people have questioned whether I should have taken Matthew out in the first place. Despite the fall, I'm glad I did and will continue to do so. I'm not letting it put me off helping Matthew participate in things his able bodied peers are able to do (even if that does include falling over!) whenever I can and judging by the manic giggles earlier in the week when he was being dunked by his brother in the swimming pool and whizzed up and down the ramps at the skateboard park I think (hope!) Matthew is in agreement - we will just watch out for large kerbs and unlit streets next year!!

video testing

2009-10-18T17:09:00.004+01:00

Just wanted to see if I could upload a video and this afternoon's choice of TV viewing seemed a good snippet to try out......

October day in the life.....

2009-10-14T08:30:00.006+01:00

...and I am woken up by a small creature announcing 'my bed is wet' (note the 3rd party reference - no personal responsibility!) I glance at my watch and as it is 10 minutes before the alarm goes off I get up, telling him to put his pyjamas in the wash. I go to his bed and discover it is bone dry. I then discover his pyjama bottoms are damp around the waist band and realise he has been sweating in the night.... no doubt due to him wanting to go to sleep swaddled in his new Ben 10 dressing gown! That's good - one less job to do!

On coming downstairs I discover (a bit like Newton's 3rd(?) law) jobs are neither created now destroyed just changed from one form to another and that Jos has pooed over night in the lounge. As he is become more and more unstable on his legs and unable to walk very far this is becoming a more common event. Luckily constipation due to less exercise has its advantages at times so that job is quickly sorted and a smell of disinfectant wafts around the house.

Everyone fed and dressed, Jack dropped off at school complete with remembered keyboard I head off to work. Only one person today - this recession/downturn/whatever the latest in phrase is, is beginning to hit around here.

After work a few jobs are done including trying to sort out with the bank why a cheque given to one of our carers has been cashed but not by her despite it being paid into her account. We will look into it and get back to you...... watch this space!

Lunch and then an hour or so trying to work out ~~Jol's new toy~~ our latest purchase - a boat! Unfortunately not a 60ft floating gin palace but more in keeping with our lifestyle - a 3o year old 3rd hand sail boat. A Drascombe Dabber to those it means anything to! Living in the Lake District it seemed an ideal hobby to take up and hopefully get a bit fitter and the other sailers we have met locally all seem a friendly bunch and willing to ~~laugh at~~ help out a couple of novices.

The weather was grey and drizzly so we decided to have a go at working out our bumpkins from our mizens...... and try to learn the lingo at the same time!

All too soon it was time to collect Jack from school, get some food into him and into his Beaver's outfit (complete with badges newly sewn on!) Despite carefully looking after his woggle (basically a black band to tie round his scarf) all week in the last 30 seconds I managed to put it down and then couldn't find it! No problem I went to get a black hair band...... no black hair band - so Jack has gone off proudly sporting a purple hair band on his bright red scarf!

Later on I received an email from my cousin who, although only living 2 hours ago, contained the line:-

"I think it was 1978 when I last saw you.... so what have you been doing the last 31 years?!"

Hum, think our family needs to work on its communication!

All too soon it is time to go and collect Jack and his friend - even if you didn't know where the scout hut was, you could easily find it by the noise! My utmost respect goes to those people who volunteer to run after these clubs - having said that I have agreed to help out next week when they are doing ~~first aid~~ pumpkin carving.

this caught my eye....

2009-10-07T22:23:00.002+01:00

Anyone brave enough to ask.....?!

Update....

2009-10-06T18:44:00.001+01:00

....to cruel to be kind. This afternoon Jack swam 3/4 length of the pool on his own!!

Beaver Sleep Over Camp

2009-10-04T13:12:00.004+01:00

Jack started Beavers last month. As we have been away he has only been to 2 meetings yet still wanted to go on their sleep over camp - in fact he was very excited about the thought - including coming down at 10.30 Friday evening to ask if it was Saturday yet!

He has slept over at my mum's and at a family friend's but this was the first time he had had an organised sleep over.

Bag packed and nearly everything named (I drew the line at labeling wash things figuring they wouldn't get lost on the basis they wouldn't come out of the bag!) He also had a pillow, sleeping bag and sleeping mat and a packed lunch - Matthew isn't the only one in the family with the inability to travel light!

There was a brief moment of lip wobbling at the station where they were going to get the train to a nearby village (co-incidentally where Matthew goes to school) but that soon disappeared as he 'discussed' with a fellow Beaver who was going to sit next to the window on the train - and they were off!

This morning I collected him from the village hall opposite Matthew's school (where the hall caretaker recognised Matthew!) He came back ladened with a certificate, a paper hat, a decorated straw, a one-legged alien (apparently it had 3 legs originally!) and someone else's drink bottle!

'Did you miss us?' I fished?

'Yes but I missed beddy* more!' came the honest reply!!

(*beddy is his cot duvet he still sleeps with at home - he has a smaller but less mangled version for trips away!!)

Cruel to be Kind

2009-10-01T17:32:00.006+01:00

Last week we flew off to Sardinia.... Matthew was having a weekend at school and due to have a day out at a local safari park and Jack had permission to have some time off school.

The flight was timed well - landing about 10 minutes after the heavens opened - but more importantly 10 minutes before the lightening started! However, this did mean the roads were awash and so we reached our pre-arranged destination at 2 am only to find it all locked up and no one around. The only solution was to sleep in the car - a small hire car! The front seats reclined to about 60 degrees and so Jack snuggled up in the back underneath the backs of our seats and we managed a few hours listening to rain on a (very) tinny roof!

The holiday had one main purpose - to get Jack swimming! Those who know Jack know he has many talents, athletics, whether on dry land or otherwise not being one of them! But to be fair to him he did try ~~and was also very trying at times.~~

Lots of bribery, swearing, encouragement and by the end of the week he was managing a semi-decent breast stroke (and no doubt dreaming about 'stretch those arms' and 'remember those frog legs' in his sleep.

Just need to 'keep on swimming' as they say!

Day in the Life (again!)

2009-09-14T09:36:00.003+01:00

Woke up to find a small creature next to me (that lad would make a great cat burglar!)
Woke other small creature up (why do they wake at 6am at weekends and decide Monday morning is a good day to have a lay in?)
Tried and failed to give the impression to the carer who arrived bright eyed and bushy tailed (and early) that we had been awake for at least 5 minutes
Came downstairs and fed cats
Fed aforementioned small creatures
Got everyone washed and dressed and deposited at (hopefully) correct schools
Fed cats
Realised very low on milk so decided to be healthy and cycle 2 miles to shop to get some more
Discover very small looking hill at end of ride is in fact much bigger when on a bike that hasn't been ridden for several years and using legs that have not ridden for several years
Fed cats
Had coffee and ~~recover~~ sit down
Filled in some forms, did washing and noted Matthew's record of 17 mucky bibs in one 48 hour period was not quite broken
Fed dog who was for some reason woofing at his empty dinner bowl - if it was a hint it worked!
Fed us
Pushed cat off computer keyboard and tried to unzoom the screen having been zoomed by a cat foot
Put cat on the floor after it immediately jumped up again
See 16
See 17
Gave up on computer and went and fed cats
Collected Jack and another small creature from school and having listened to how much noise they can make mentally made a note to tell the pediatrician at the next appointment to cross lung issues off Jack's list of on going ailments
Suggested they went and played outside and retreated indoors to cook tea
Cleared up bits of pancake from floor having foolishly asked if they wanted to toss their own pancakes
Offered bits of pancake to cat - he refused
Offered bits of pancake to dog - he ate it
Took temporary small creature home
Got own small creature into pyjamas with minimal nagging
Read chapter 16 of book - and had discussion about how big a Doomfang* is (very big) and if it could get through the bedroom door (it couldn't)
Fed cats
Fed us
Slavered ankles with anti-histamine cream having been bitten to shreds by even smaller creatures at weekend
Fed cats and locked them in kitchen
Went to bed!

....did I remember to feed the cats today?!

Oh for a No!

2009-09-05T14:41:00.003+01:00

We are lucky in that on the whole Matthew is a happy, smiley creature. Certain things are going to upset him - general things such as pain, wind, hunger etc as well as Matthew specific things such as biting his finger and as he has sharp teeth and a strong bite reflex that is understandable, and being abandoned aka someone leaving the room for anything more than 2.8 seconds.

Yesterday he was what could only be described as a grumpy bum - all day non-stop grizzling. No tears but generally unhappy and miserable. So we went through the usual -

1. Wind? No

2. Hunger? No

3. Pain? Given dose of calpol incase getting cold Jack currently has - No

4. Pooed? No

5. Wanted a cuddle? No

6. Wanted general shift around in chair? No

7. Wanted something different on TV? No

8. Wanted to be on my lap? No

9. Wanted to be on someone else's lap? No

10. Wanted to sleep? NO

Have to admit by this time I was getting quite frustarted at trying to work out what was wrong and would have thrown him out the bedroom window had it not been raining!

It is times like these I really wish we had some form of reliable communication system with Matthew. Yes he can let us know if he is happy or sad but not why. Even a basic yes or no would open up the world to him - and his world to us too.

School and ourselves are trying to get him to use a switch system - at the moment he has a row of 4 switches which has various members of the family recorded on to them and he has to ‘find mum’ or ‘find Jack’ - however this has limited success.

Today luckily it is business as usual - manic giggles at Jack making silly noises, high pitched squeals at the antics of the Tombliboos et al..... but that still leaves the question about yesterday - why and what?

sometimes it is so difficult to get comfy......

2009-08-31T22:19:00.003+01:00

More travels

2009-08-28T09:18:00.009+01:00

Just enough time after coming home from special kids camping to over load the washing machine and set off again..... A while ago one of the cheapie airlines was offering cheaps to Norway which co-incided with the dates Matthew was in respite. We knew Norway was going to be expensive but persuaded ourselves the cheap flight would balance things out...... not sure how bias we were though!

Jack decided he didn't want to come and my mum was more than happy to have him for a week (not sure she was by the 1,005th why?!) so we had a week away - without children!!

As expected the scenery was fantastic as were the prices of even the basics. However one night stands out for being exceptional value for the large amount of money it cost - that was the night we spent at the Hotel Mundal in Fjaerland or Fairyland as we called it. The hotel was something straight out of an Agatha Christie plot and had been in the same family since it was built 100 years ago. The present owner invited all the guests into the music room before the (4 course) evening meal for a glass of wine and a little talk about the hotel's history - and as befitting a hotel of its kind it had some great stories to tell.

Dinner was served on silver platters and then coffee in the drawing room...... one could seriously get used to life in the sophisticated lane!

The next morning we borrowed the hotel's rowing boat and did a bit of light exercise to burn off a few of the previous night's calories! The fjord was like the cliched mill pond and so rowing was much easier than the kayaking we had done the previous day (and when Jol had an unexpected dip in the fjord after trying to practice a technique you use to stop yourself going in!)

Accommodation on other nights was a bit more 'rural' but still fun none the less......

and the choice of bedroom decorations was 'interesting' at times too......

The natives were all very friendly though and happy to have their pictures taken!

As expected the scenery was spectacular (and thankfully free).

Would love to go back again, this time further north towards the arctic circle but need to clear the (3 page) credit card bill first!!

belated day in the life

2009-08-17T10:45:00.004+01:00

Friday saw us waking in the big red bus half way through our camping trip in Derbyshire with the special kids group. The boys and I were sharing the bed in the van and it was a nice sight every morning to see they had rolled together in the night and were cuddled up. After breakfast

we had an impromptu bout of chair hopping - trying out a friend's chair - same chair but different set up ......

Then a bit of brotherly love/rough and tumble depending on which nano-second you glanced over

Having had a busy day the day before we decided to generally lazy around chatting and playing for most of the day. In the afternoon we went off to Ikea to get some more camping plates and cups etc (to save on the washing up trips!) - Jack stayed behind with one of his new friends so Matthew, our carer and I set off. Matthew had been a bit of a grumpy bum in the morning - usually a sign of hip pain so he had been 'codeined'. Since starting a new drug about 18 months ago his hips have given him very little discomfort so this was unusual. I had forgotten how relaxed the codeine makes him, arms flop to the side instead of being held tight. This together with the fact our carer was pushing him meant I could see him from the front instead of my usual position of behind him. I realised not only is he very 'leggy' but he is also very 'army' too - he has somehow sometime become a real Mr Tickle!

After leaving Ikea with a new lampshade and a salt and pepper pot(and not the camping crockery we went in for!) we went next door to a large camping shop that despite having a huge showroom did not have the camping chair we wanted but we did each get a fleece in the sale so the trip was not wasted!

Back at the camp site all was well apart from Jack given his new found friend's mother a moment of panic when he said he wasn't allowed nuts on being offered a chocolate from an assortment box - not sure where that came from as he is allowed them and certainly is not allergic to them!

Dinner was a microwaved (and then blitzed for Matthew) meal - it might seem a bit of a cop out taking a microwave camping, but with 2 small children and a small space it definitely makes life easier!

Then evening passed with a mixture of wine, talking, laughing, glow sticks, luminous poi balls being waved around by various people - some more expertly than others

until it was time for bed again in the big red bus.

One advantage.....

2009-08-11T22:23:00.003+01:00

.... of having a disabled brother is that you get your own personal soft play and zip slide when he goes into school during the holidays for a physio day.......

Lakeland 100

2009-07-31T22:45:00.004+01:00

Just got back from helping at Lakeland 100 an endurance race to make the fittest tremble in their running shoes. I was helping with the registration NOT competing! The brother of a friend from special kids was organising it and special kids was their chosen charity.

My job was to give out the high-tech gillets that had been provided by the sponsors - have to admit I got very good at eyeing up the competitors and working out if they were s, m, l, or xl!

The race consists of either 50 or 100 miles (although apparently it is 103 miles this year!) around the lake district - ie lots of ups and downs - the 100 milers started at 7.30 this evening and hoped to finish early Sunday morning most running continuously while the 50 miles got an extra night in bed as they start tomorrow morning.

Good luck to all those competing - I am totally in awe of you and may all your blisters be little ones!

Steam Gathering

2009-07-25T23:10:00.005+01:00

This weekend was the annual Steam Gathering.

My dad is up for a few days so we arranged for him to hire a mobility scooter (his pins not being quite so nifty these days/the basket on the front was a useful container for all our spoils/handy for a lift at times!)

As we parked the car I asked Jack if he thought we would see anyone we knew..... the person taking our money was someone I used to scuba dive with and haven't seen for 7 years.... and her husband was 10 yards further on taking our tickets...... then one of the teachers at Jack's school was just inside the barrier giving out paper identity bracelets in case you mislay your child! By the end of the afternoon we spotted 20 people we knew including one of Jack's friend's from school - unusual greeting children have these days...!

It was a fun day out - lots to see and explore - including a helter-skelter,

candy floss (Matthew liked that too!)

a vintage car (even older than grandad!) the owners of which offered to let the boys sit in it - although Jack was more interested in the horn!

and then took them over to see 'the alien car'.....

One car had a rather unusual mascot that had a sensor on so whenever anyone got too close would start talking to you - or even singing if you were really lucky....!

As the name of event suggests, there were also numerous steam engines large and small and vintage vehicles of all descriptions...

6 hours disappeared very quickly......but one good thing about having a brother in a wheelchair - there is always a ride home when you get tired....!

It's the 14th again.....

2009-07-14T18:19:00.008+01:00

I awoke to find myself in someone else's bed - Matthew's! It then came back to me, before going to bed last night I checked the kids, Matthew had somehow managed to roll himself onto his back and was fast asleep! He never sleeps on his back (at home) and can't roll on his own (apart from in a rage) so not sure what happened there. Decided to leave him - sleeping ~~dogs~~ Matthews and all that and went to bed......

........2am a horrible yell, I stagger out of my own bed to find a now awake Matthew not impressed with his beached whale impression. After too long which in reality was probably only about 10 minutes I decide life/night is too short to be awake and climbed in with him which normally means we both fall asleep quickly!

Later, Jack can be heard in his bedroom dropping his gogos into their plastic box, the noise of which seems to set Matthew off into manic giggles so as far as wake ups go it was a nice one, and around 7am a civilised one!

Matthew was due back at school so our Monday morning carer came and we had both children fed, washed, dressed and ready for school without too much delay and sat back and waited for the taxi.... and waited.....they are normally on time so after 10 minutes I phone. They are running late but do know they are collecting Matthew (phew!) and will be here in 5 minutes.......finally half an hour later they arrive. Matthew is loaded up along with 4 boxes of feed - yes I know it is nearly the end of term but figured as we won't be using them over the holidays school can store them!

Jack is taken to school and apologies made for him being late (but then he is usually 5 minutes late due to his general faffing about but for once it wasn't his fault.

I then set off to work - Tuesday is Barrow in Furness.

All low back pain today including one man who had a potentially very nasty injury 25 years ago and was lucky to be walking at all let alone as well as he was albeit with a bit off arthritis now. It always amazes me what people can do to their bodies (accident wise) and walk away yet others can slip off a kerb and have the most severe injuries. I guess that is one of the reasons it beats office life.

Home again, there is a letter from a plumber giving us a quote for what will hopefully soon become Matthew's downstairs bathroom - we are in the seemingly never-ending process of trying to get a downstairs bedroom and bathroom sorted out for Matthew before he outgrows upstairs/my back gives way whichever comes first. One day this room will be a bathroom......I am not looking forward to the clearing out part......

Then I do my domestic goddess impression ie bake some bread - (with the help of the bread maker - my goddess status is not that good!)

before setting off to collect Jack from school. For some reason we return with a class mate in tow. On the way home we spot an escaped lamb which they ~~wildly chase after~~ try and catch. However, it seems this lamb has already escaped 3 times this afternoon and so is being left out, the trouble is now it seems to want to get back into the field with its mates.... a real case of the grass being greener!

So the lamb is abandoned in favour of the trampoline - and pushing gogos down the slide - apparently they prefer that to the trampoline!!

Children fed and upstairs playing with something nicely aka not yelling at each other so time for a cup of tea before the supermarket shop is delivered and put away and for once there have been no inputting errors (we have only just finished the 11 blocks of cheese ordered last Christmas!)

On the way back to Jack's friend's house I was treated to a sneak preview of the songs in the French evening they are performing tomorrow evening. There was then a bit of a discussion as to what the words meant - the conclusion was the song was about washing your face and then getting dressed and telling your mother something....! Hopefully they will have got their words sorted out by tomorrow! However if they sing with only half the enthusiasm they were singing in the car it will be a big success. Can't wait!!

Swine flu

2009-07-07T22:31:00.005+01:00

Last week we had a letter from Matthew's school saying due to threat of swine flu they were revising their hygiene procedures and wanted to make sure all our emergency contact numbers etc were up to date etc. So filled in the required bits of the form, made flippant remark about shares in soap companies doing well and thought no more about it thinking it wouldn't find its way down all those twisting country lanes to the school......

On Monday we got a call to say there were 2 suspected cases and school had decided to close for at least a week. With some very medically fragile children at the school I can understand their decision.

So a confused Matthew came home and was met by an indignant Jack! Not only was Matthew getting a week off school, but on Wednesday Matthew's class was meant to be doing a production of 3 Billy Goats Gruff and I had said that Jack could skive school for a couple of hours and come along and watch it. So he was missing out on that too!

Life and work had to be rearranged too. One advantage of us both being osteopaths is that Jol was able to 'be me' today. Matthew and I went along with him and did a few jobs whilst he worked. We then decided to support the local economy and go for lunch at a local pasta place.

Although Matthew eats orally at home we have long since given up feeding him when we are out because most of it ends up everywhere apart from his mouth because he is ~~a nosy bugger~~ showing a healthy interest in his surroundings. So I reach into his rucksack for one of the high calorie milkshakes I keep in there only to find nappies, feeding tubes, wipes, my purse, half a packet of chocolate buttons, a couple of syringes, a pen, a spare gastrostomy button, some nappy sacks, a receipt for something long since bought and forgotten about I haven't got one! No problem - good old M&S is 2 doors down so I nipped along to get a small carton of full fat milk...... only all they have is what Jol refers to as water milk (skimmed milk to the rest of us) or huge 4 litre cartons of full fat. Then I see a small bottle of belgium chocolate milk shake - good, thick consistency and heavily laden with calories and make an executive decision.....!

Having your liquids the lazy way aka via a tube feed does mean you miss out on the taste - sometimes a good thing (nutrini*) but other times not (the above mentioned milkshake!) But thank goodness for reflux (now that is a sentence I don't use too often!) as a little burp or two meant at least Matthew got a taste of it before Jol decided it would be too rich for him and helped him out a bit whilst waiting for his pudding!

In the meantime, we are watching and waiting, although healthy at the moment, Matthew, like many special needs kids is in the high risk group(s) and when he is ill he does tend to do it rapidly and big style........

*no I have not personally tasted it but the smell is enough to tell me it would not be on my list of top 10 favorite foods

Strawberry Fair day

2009-07-05T18:33:00.004+01:00

Matthew's school have an annual strawberry fair as one of their many fund raising ventures. Jack particularly enjoys this as it involves not only strawberries but anything pink or red which translates as lots of prizes of those disgusting 'spot the food content' hyperactivity-inducing-meanie-mum-doesn't-normally-allow-them-in-the-house E number sweets.

So off we set.......

Jack makes a beeline for S, Matthew's carer who is in charge of the tombola as usual. Jack has an interesting tombola technique but had been ~~lectured~~ enlightened on ~~not cheating so blatently~~ the correct method.

Typically he managed to win 2 prizes out of a possible 5 whilst Matthew and I failed abysmally!

Next stop was duck hooking where you had to hook 3 ducks and add the numbers written on the underside of them together and get more than 10 - so an educational game!!

The next stall - we are nothing but thorough with these events - was balloon stomping! This was a bit tricky as Jack doesn't quite have the physique for this game. Luckily the brother of one of Matthew's classmates was more than willing to oblige.....

Then the main reason for the day......

...there were strawberries on top but my shutter speed was not fast enough to capture them! It also seems Jack has forgotten the valuable piece of advice given to him by his father which in turn came from his father's friend's mother - never eat anything bigger than your head!

Finally there was a spot of face painting......

Jack declined (personally I think he thought if he had his face painted he would need a bath and that would mean less playtime!) A, the face painter, is M's new second carer, the school try and give the boys a male carer for a least part of the time. A and Matthew seem to get on well - A speaks french and as those of you who know Matthew know, Matthew loves numbers and counting ..... ergo Matthew now loves counting in French!

The end result - not bad for a first attempt - for both of them!!

We were too late for the official wellie lobbing contest which was just as well as it was getting a little shall we say competitive and male egos were at stake until the prize was revealed - a rather naff china sheep and then the winner was trying for a recount and be demoted to 2nd place! Whilst all this was going on, Jack had a little practice ready for next year's event.....(the shadow of the wellie can just be seen at the edge of the picture!)

Then home during which Jack made a classic 'Jackism' when talking about the throwing the willie contest! Now that would be enough to injure a few male egos!

Caption competition

2009-07-05T18:29:00.003+01:00

Was trying to think of a witty and apt title for this post but nothing seemed to be right so thought I'd open it open to suggestions.... answers on a (e)postcard please!

(you may need to double click the picture to enlarge it to get the full detail!)

Let me take you by the hand......

2009-06-22T12:48:00.008+01:00

cue dodgy song link not to mention one of those songs that will now be going round your brain for the rest of the day......!!

Sometimes things have a habit of working out. Last year the father of one of my closest friends died. J was a lovely man and I spent most of my formative years round at their house - he was my other dad and I was his other daughter!

Unfortunately I was not able to get to the funeral - a combination of geography, my complicated life(!) and the Jewish tradition of having a funeral quickly after a death all played a part.

Judaism however do have a tradition of having a ceremony once the headstone is put up for everyone to come and view it and to pay their last respects. This was arranged for a weekend that Matthew was staying at school and for a while I have promised to take Jack into London and do 'the touristy' things so we made plans for our trip to the big city.....!

I collected Jack from school a bit early and we got the train down south to stay with my father in the outskirts of London. The journey passing quickly thanks to the joys of pen and paper!

Bright and early(ish) the next morning we got the tube (another first for Jack!) and met up with another school friend of mine for a trip on the London Eye

Jack does enjoy a sing and dance so Covent Garden was the next destination to watch some of the buskers. We passed through Trafalgar Square where a tradition of climbing on the lions had made the lions backs very slippery and a perfect slide....

and Jack helped one busker.....

.....and was amused by the props another was using......

Lunch continued in a musical vein although my friend did her best to try and convince Jack that singing a Kajagoogoo song was not trendy and he should chose something else!

Feet rested and stomachs filled we headed for Natural History museum where Jack as a typical 7 year old made a beeline for the dinosaur section. He was very impressed (as was I!) with the size of these mighty creatures but most of all by the moving and roaring tyrannosaurus rex model - that was only a teenager and therefore only 3/4 its full adult size - but making grunting noises that would convince most parents of teenagers that evolution has not come that far!

We then went into the geology section because Jack wanted to ~~go up the long escalator~~ learn more about how the rock formation we have near us came into being

......before heading for the shop where he persuaded me to buy him a cup with a curly-whirly straw set in it to replace the one he had before that got put in the dishwasher - which resulted in a curly-whirly straw uncurly-whirling itself (please take note for future reference!)

The main purpose of the trip, the stone setting was the next morning. I put on my smart clothes and left Jack with my dad being given an education on various Ben 10 aliens.

The service was quite emotional given it was Father's Day and my friend is currently 6 months pregnant with the 2nd grandchild her dad would have loved to have shared his humour and stories with as he had done with his/her older sister.

The Jewish tradition of having a stone setting approximately a year after a death seems a good idea. Everyone meets up, a few words are said about the deceased and everyone gets to see the headstone. It seems to allow for closure following a bereavement and 'permission' for those left behind to try to move on to the next part of their life. Especially if, as in this case, the death was sudden, that coupled with the Jewish tradition of having a burial quickly after the funeral can mean the funeral passes in a blur for those left behind.

Everyone went back to the house afterwards where anecdotes, laughs and a few tears were shared.

My memory of J? It has to be going to their house every year for the Sedar night meal - me, a gentile, being given a children's pop-up copy of the Haggadah (English one side Hebrew the other) to try and follow the service) and J always getting distracted and telling us stories about anything and everything - sometimes related to the Sedar meal but usually not!!

Photoless day in the life...

2009-06-14T21:56:00.003+01:00

...because I have only just realised it is the 14th today which is annoying as today was a great photo opportunity day.

First of all Jack had some very strange homework which involved rolling a piece of A4 paper into a cylinder first length ways and then width ways, filling this with pasta and measuring how much pasta each cylinder held. Needless to say the kitchen floor was covered..... it also confused me as I would have thought they would have held the same but they didn't! He had to explain why (he is 7 by the way!) luckily he just decided that 'one was bigger'. (I later got an explanation - thanks D on special kids!) which involved pi and have to admit to being tempted to get him to copy out the 10 lines of explanation into his homework book!)

Pasta and then lunch cleared up, there was a bit of excitement when I noticed Matthew was suddenly sporting a toothless grin - well one tooth less than he had at breakfast - and no I don't know where it went* - but have put a note in his school book telling them they might find it in a day or two!)

Jack wanted to go on a go-go hunt! One of our carers had taken him out on his bike earlier this week to go and hunt for go-goes (she hid a duplicate her nephew had given her). So off we went.... on the way we met a neighbour who works very hard on his allotment, he was collecting water on the other side of the stream and so threw some water into the stream from his bucket - the noise made Matthew squeal and giggle like mad which was nice to hear after him being a bit off colour the last few days.

Through a few gates - the kissing gate posed a challenge with a large trike and a wheelchair until we realised the main gate was just stiff and not locked! It was a lovely sunny day and we ended up walking a route I hadn't been before despite living here for nearly 10 years across onto the bay.

We came home via the local shop where I bought a Sunday paper that was giving away a free DVD of Withnail and I and Jack had an ice-cream (after much deliberation on the various options!) we ate them in the local park where Jack met a school friend and played with him for half an hour which gave me a chance to skim read the paper while Matthew giggled at Jack and L playing.

On the way home I inadvertently wheeled over a dried leaf - again cue manic giggles from Matthew so for the rest of the walk we were trying to find leaves to run over - not easy at the beginning of summer!

With almost perfect timing our carer was just pulling up in the driveway as we got home and despite being out on his bike for over 3 hours Jack and K went off into the garden for a jump around on the trampoline.

After dinner when Jack stunned us by saying he was 'starving' this is the boy with a very poor appetite! It was bath time - Matthew loves having a bath with Jack despite it getting a bit of a cramped affair these days and when the bath toy of choice is a 60ml syringe there was - yep - more manic squealing and much splashing until baddie mum got squirted once too often and ended the fun!

Then teeth (what's left of them!) and bed!

* (the tooth fairy has accepted an IOU for the tooth and being very efficient and taken the £1 she would have given Matthew and swapped it for a chocolate coin which she thinks he will prefer!)

Egg and Spoon technique

2009-06-13T09:32:00.003+01:00

1. Put one hand on the spoon the other on the egg

2. Walk looking and smiling at your family and brother not looking in front of you

3. Not care at all whether you win or not as everyone gets a sticker regardless of position

4. Enjoy the fact you are outside and can lazy around in the sunshine on the mats daydream while everyone else rushes around taking part in their races and not in a classroom doing 'horrible work'

Think we might need to stamp on Jack's competitive element before it gets totally out of hand!!

Pulling a sicky?

2009-06-10T19:55:00.007+01:00

Having 2 boys and 2 different schools means inevitably sometimes things are going to clash.

Friday morning is Jack's sports day (he is egg and spooning and infant relaying!) and an appointment with the neurologist at Matthew's school. Although his seizures are thankfully under control and it should be a straightforward appointment, one of us still needs to be there as they need to discuss, document and sign what if any resuscitation we want for Matthew if he becomes very ill.

So told Jack unfortunately we wouldn't be able to go and had given a friend's mum instructions to take lots of photos.

Re-wind to last Sunday when Matthew was a bit unsettled, took a while to get to sleep and then woke several times (he normally stays asleep once he gets to sleep) before I ended up getting into bed with him and we both dozed on and off until morning. Monday morning he was what could only be described as a grumpy bum - gave him some codeine which seemed to help and he went off to school.

I spoke to school later that day and they said he was a bit quiet but had given S, his carer, a big grin when she came in so put it down to Monday morningitis.

This afternoon school phoned to say he was not well - nothing serious, but a bit hot, a bit pukey and a lot feeling sorry for himself and they thought a couple of days at home would do him good - translates as if he is coming down with something we would rather he spreads it around home and not school!

So I go and collect him - I get a grin but he does look a bit fed up and floppy and even falls asleep in the car briefly on the way home - something he never does normally.

However once home he seemed to miraculously improve - laughing at Jol playing the guitar (hopefully Jol didn't take it as a critical comment for his playing) and then laughing as Jack pulled his head around pretending to be a hair dryer.....!

So it seems that not only I am going to be able to go to Jack's sports day but Matthew will be coming along too to cheer his brother along!!

Labour of Love

2009-06-08T14:13:00.007+01:00

Recently a friend (you know who you are!) set me a challenge.....

"'Music always helps; no matter what you are going through. So if you flunk a big test, had a really big break up or you just miss someone so bad it hurts then listen to my playlist 100 songs to save your life and this will help...' (One Tree Hill)"

This was her daughter's idea! They must be songs that matter to you or bring back memories ...not just faves!

Anyway, here are mine (in no order - just as I thought of them.) Didn't take too long in the end! Now need to dig out many of them to hear them again - and no doubt have a list of 'how could I have forgotten that one....' by next week!

1. Seduced - Mary Coughlan

2. Perfect Day - Lou Reed

3. Affirmation - Savage Garden

4. 40 -U2

5. In my Life - Beatles

5. Handbags and Gladrags - Stereophonics

6. Lay my Hat - John Martin

7. Come on Eileen - Dexys Midnight Runners

8. Oliver's Army - Elvis Costello

9. Bat out of Hell - Meat Loaf

10. Jupiter from the Planets - Holst

11. Power of Love - FGTH

12. It must be Love - Madness

13. My Girl - Madness

14. Fairytale of New York - Kirsty McColl and and the Pogues

15. Alison - Elvis Costello

16. Labelled with Love - Squeeze

17. Are you Alright? - Lucinda Williams

18. Billy don't be a Hero - from Priscilla soundtrack

19. Cool for Cats - Squeeze

20. Gloria - U2

21 Good Year for the Roses - Elvis Costello

22.New England - Billy Bragg

23. No Woman no Cry - Bob Marley

24. Somewhere Over the Rainbow - Israel Kamkawiwo'ole

25. Mini compliation - Gregorian Chant

26. England 2 Colombia 0 - Kirsty mcColl

27. On the Beach - Mary Coughlan

28. Pair of Brown eyes - Pogues

29. Up the Junction - Squeeze

30. Sunday Bloody Sunday - U2

31. Tainted Love - Soft Cell

32. Theme tune to To Serve Them All My Days

33. Father and Son - Cat Stevens

34. Big Yellow Taxi - Joni Mitchell

35. You're so vain - Carly Simon

36. Get along without you Now - Pasadenas

37. Wichita Lineman - Glen Campbell

38. Golden Brown - Stranglers

39 Sunday Girl - Blondie

40. Enola Gay - OMD

41. Drive - Cars

42. Wonderful Life - Black

43. New Life - Depeche Mode

44. Wind Beneath my wings - Bette Midler

45. American Pie - Don McClean

46. Love Cats - The Cure

47. This Shirt - Mary Chapin Carpenter

48. Whole of Tapestry Album (!) - Carole King

49. katie - Mary Black

50. Meet me where they play the blues - Mary Coughlan

51. Spanish Train - Chris de Burgh

52. Mary's Prayer - Danny Wilson

53. Blue Monday - New Order

54. Moondance Van Morrison

55. Ride On - Christy Moore

56. Let it Be - Beatles

57. Woman's Heart - Eleanor McEvoy

58. When a Knight Won his Spurs - ?

59. Oh Joyful Light (to tune of Danny Boy!) - School song

60. My Perfect Cousin - Undertones

61. Making Plans for Nigel - XTC

62. Come Dancing - the Kinks

63. Song for Whoever - Beautiful South

63. For a Friend - Commundards

64. Puff the Magic Dragon - Peter Paul and Mary

65. Pretenders - Hymn to Her

66. Gaudete - Steeleye Span

67. 74-75 - The Connells

68. We didn't start the Fire - Billy Joel

69. Red Red Wine - UB40

70. Sweet Baby James - James Taylor

71. Any Dream will do - Joseph

72. Heard it Through the Grapevine - Marvin Gaye

73. Wonderful Wold - Sam Cooke

74. Listoonvarna - Christy Moore

75. There she Goes - the Las

76. I am woman - Helen Ready

77. Another Saturday Night - Sam Cooke

78. The Owl and the Pussy Cat - (read by) Leslie Phillips

79. These Boots are Made for Walking - nancy Sinatra

80. Song for Guy - Elton John

81. Mandy - Barry Manilow

82. Love and Affection - Joan Armitrading

83. Stand down Margaret - The Beat

84. Blowing in the Wind - Bob Dylan

85. Born to Run - Bruce Springsteen

86. Brown Eyed Girl - Van Morrison

87. Do they know its Christmas - Band Aid

88. God only knows - Beach Boys

89. Love Will Tear us Apart - Joy Divison

90. Martha's Harbour - All About Eve

91. Streets of London - Ralf McTell

92. Stairway to Heaven - Led Zepplin

93. This Charming Man - Smiths

94. Total Eclipse of the Heart - Bonnie Tyler

95. Baker Street - Gerry Rafferty

96. Hey Jude - Beatles

97. Wuthering Heights - Kate Bush

98. Life on Mars - David Bowie

99. Downtown - Petuala Clark

100. Scarborough Fair - Simon and Garfunkel

101. Excerpt from "A Teenage Opera - sneaking it in at the end cos I just heard it on the radio and can't believe I forgot it!!

Two ends of the week

2009-06-07T12:44:00.008+01:00

Last weekend was the annual Holker Garden Festivaland as we are considered locals get free tickets!! The weather was warm and sunny and so the perfect day for having a wonder looking at plants and all the other things garden and not garden related and marveling at what some members of the WI can do with flowers and gnarled pieces of wood! Jack, a Wallace and Gromit fan, was particularly impressed with the winning exhibits in the 'Grand Day Out' category!

He also tried his hand at dry stone walling and receiving a certificate for his efforts!

While Matthew had great fun with a huge willow ball ......

Monty Don was there doing his best to auction of various pieces of garden furniture for charity but being in an auction audience is at best dangerous on the wallet with a child with sudden muscles spasms so we didn't hang about at that bit!

We did however stop off at the food hall and said hi to our neighboursand bought some of their ewe's cheese before coming home again and sorting through our spoils!

At the other end of the week today we went to see Room on a Broom (by the same author as the Gruffalo). We had front row seats (sometimes Matthew and his wheels have their advantages!) Unfortuantely 3/4 way through Jack decided it was too babyish for him (despite giggling at several bits of slapstick in it) and as we had to be somewhere else in less time than it takes to drive there we sneaked out and confused the lady 'manning' (womaning/ladying) minding (!) the door when we walked straight passed the toilets she had helpfully pointed out to us!

The somewhere else was a pool party being held by 2 of Jack's classmates who share a birthday. It was kind of them to include Matthew although one of the mothers looked relieved when I said I would go in the water with him! So 20 hyper children making the most of the last few hours of weekend before school in the morning laughing and jumping around with various floating octopi, dinghies and the like.

Unfortunately Jack was wrong place wrong time and got pushed under the water and to quote him 'kidnapped' so he got out early but Matthew loved in even if it was about 20 degrees cooler than the pool at school he is used to!

Once everyone was out and dressed birthday tea was followed by ice cream (Jack very kindly shared his with me Matthew) and birthday cake which wasn't shared!

Two tired boys swifty deposited into bed despite Jack's protests that it couldn't possibly be evening because it was still daylight so I called his bluff and told him he was right and to get up have breakfast and get dressed ready for school! One day he will call my bluff back and do just that, but tonight he didn't put up too much resistance!

Mad dash to Sardinia....

2009-06-06T09:08:00.014+01:00

Jack's school has 2 weeks off at May half term (they finish a week later for summer to make up for it) so a few weeks ago we decided to see if there were any cheap flights going off somewhere for that second week when Matthew was at school.... amazingly enough one of the cheapy airlines was flying to Sardinia (where we went last year and enjoyed) and so we booked a couple of seats flying out Tuesday returning Friday (Jack being given the option of coming or staying with grandma - chose grandma!!)

So everything was organised, flights booked, ditto hotels for first and last night, care hire, car parking, animals sorted.... The plan was to see Matthew off to school Monday morning, drive down to grandma's - drop Jack off, on to a friend who lives half an hour from the airport, few hours with them then up at silly o'clock to get the flight and away..... carer, back up carer and back up back up carer all organised to meet Matthew's taxi from school as we would not be back in time.

So far so good.......

48 hours before we set off, having booked just to take hand luggage, Jol mentions about taking a piece of luggage for the return flight that we can fill with very nice wine to bring back. So I try to get up the details of our flight on the computer.... and curse at the site for not finding our details.... and then find out somehow we have managed to book the flight for Monday morning and not Tuesday morning!!!!

Thankfully our carer agrees to come over on Sunday and look after Matthew in the day, stay over and get him off to school the next morning. Hotel, car parking, car hire, grandma, friend, animals and countless other things all re organised and we breathe a sigh of relief and wonder just how we managed to do that but at the same time thankful a love of wine saved us from turned up 24 hours too late. We managed to miss a flight by 5 minutes a couple of years ago and another time a flight was cancelled due to fog just as we were about to board so we never really relax until we are on the plane!

Apart from a little hitch of setting the alarm clock an hour earlier than we needed to, we navigate to the airport via the M25 aka the world's largest car park (some advantages of having a flight at 6am - even most commuters are still snoozing away at 3am!) we get away and arrive in Sardinia a few hours later....... to grey clouds and an amazing thunder storm!

Thankfully this doesn't last too long - just long enough to give us an excuse for not doing the walk up into the mountains Jol was ~~threatening~~ promising me!

The next day we did however do a 2.5 hour walk along a cliff to get to a secluded beach at Cala Luna .......

and felt justified in getting the boat back!! We also did our random act of kindness by lending a fellow hiker the boat fare back after she decided she was unable to walk back and her ~~mad~~ energetic boyfriend wanted to see how quickly he could get back!

A gentle day was planned the next day (stiff muscles and all that!) so a trip to the Oliena was in planned to get the wine(!) which was sold in bottles as well as via a pump at the local co-operative (test your Italian!) where all the locals bring their wine. The assistant was very knowledgeable and free with the samples (this was at 10am!!) so we ended up buying 'some'.

Loaded up in our 'thrifty' hire car - comes complete with scratches, broken air vent and hole in passenger seat - company name kind of gives it away! we headed for our last port of call discussing plans as to how best to package up the bottles to get them safely home..... the plastic canisters should survive the best airline cargo carriers can through at us/them.

Suddenly we were flagged down by 2 Carabinieri (police) wanting to see our documents.... cue lots of rapid Italian - Jol's Italian is reasonable but not at that speed. Turns out our tax disc was out of date and the police have the option of fining you lots (Jol's Italian numeracy didn't go that high!) but thankfully we got away with a warning so left the scene quickly (but not so quickly as to get a speeding ticket!)

Our last afternoon was spent on a beach we discovered by taking a wrong turning and doing a sudden u-turn - lovely clear water, sunny skies and a bar that sold chilled wine - what more do you need? Just a shame we discovered it on the last day!

Fast forward to our Stansted airport where we saw our precious cargo (ironically the bag containing the plastic containers) coming along the carousel face down..... as we grabbed it there was a smell of wine and dripping onto the surrounding floor.... oh well at least we can have a suck on the towels we used as extra padding - so long as you don't mind a bit of sand every now and then.....!

What ice cream?!

2009-05-24T21:58:00.008+01:00

Typically chose one of the hottest days of the year to go indoor 10-pin bowling with some friends!

But did manage to get outside for a play in a playground,

a walk along the front and bop to some music coming from a nearby shop.....

and of course an ice-cream - hopefully the first of many this summer!

Day in the Life (again!)

2009-05-14T18:33:00.005+01:00

Thursday today!

After breakfast there was the obligatory admiring of Jack's sunflower and again a debate about when it would need to be put outside (we agreed when it touched the top of the window frame, which, judging by the speed it is growing will be this weekend!).

Then I left Jack to get dressed..... I then went and undistracted him - this time from his calendar and working out how many more days until he goes to stay with grandma!

His school is doing a big 'walk to school' campaign at the moment and Jack has been complaining he can't walk to school (and therefore get the all important badge) so we parked in the square about 5 minutes away and walked the rest of the way.

Thursdays I work in Ulverston, a quaint market town and are currently in the middle of flag fortnight....

Several bad backs/necks later.....

....it was time to collect Jack from school who came running out with T asking if she could come back to play? After getting the ok from her mum we walked back to the car - again left in the square!

After a noisy hour or so (T found an old trumpet and Jack, not to be outdone,screeched around with the recorder) we had the usual pancakes and then they decided they wanted to go on the trampoline. Ok probably not the best order to do things in but it was quieter than the other option!

Jack has always struggled with the physical side of life and T, as well as being head and shoulders taller than him, is probably the best in their class at PE but, bless him, he did his best to keep up with her!

T deposited safely back at home and Jack likewise in bed after the same distractions as this morning plus a few extra moans about having to go to bed when he wasn't (yawn) tired it was my turn to do all those exciting things that grown ups do when children are in bed like play with Jack's go-gos, watch his Ben 10 DVDs, eat the rest of his Easter eggs*

*despite what he may think none of the above are true**

** one may have been true in the past......(but I cannot comment on which one!)

History repeating?

2009-05-07T20:50:00.008+01:00

30+ years ago I went to play at a friend's house and came home with my first milk tooth in a piece of tissue (fell out naturally rather than as a result of any disagreement!) This afternoon Jack went to play at a friend's house and came home looking like this.......

Woolacombe

2009-05-05T18:51:00.007+01:00

May Day bank holiday (or whatever it is called these days!) is a friend's birthday. This friend has a friend who has a very nice penthouse apartment in Woolacombe which they rent out to said friend and his friends. We are his friends!!

Beaches and penthouse flats (with lots of stairs) and wheelchairs don't mix too well so Matthew went to Derian House where, amongst other things, he played and won at bingo!!

We met up with said friends, and as it was sunny headed for the beach where Jack modeled his new wet suit - hastily bought in one of the many nearby surf shops after discovering the one we bought on ebay's ~~crotch was level with his knees~~ still had plenty of growing room!

The fellas did a spot a surfing after which we did the exhausting job of helping remove them from their wet suits (knew those biceps built up from years of carrying Matthew would come in handy one day!)

Once the sun was past the yard-arm we headed for the pub where Jack was presented with an eating medal! Jack is not a good eater and last time we were at our friend's house, he had breakfast in a bowl that had gold silver and bronze eating awards marked on it and he was given a medal for eating weetabix up to the silver line. Very kindly our friends had got him a medal with Jack eating champ engraved on it. He now had to live up to his award......!

The extra food seemed to give him extra energy as just as he started flagging and we were thinking about going back to the flat, a band came on at the pub and before we knew what was happening Jack was up on the table dancing....! As we were sitting behind the band they were oblivious to him dancing - unlike a crowd of about 20 people who were standing facing the band!

The next day, whilst not classic British bank holiday weather ie rain, was not beach weather either so we got out the kite that had been brought down and had a morning playing with that and making jokes about Jack doing a Winnie the Pooh and the blustery day whilst holding the kite string!

All too soon it was time to pack up and make our way home again via Derian and via a friend who had been looking after Jos - who also seems to have had a good weekend due to a certain female collie dog called Meg..... he may still be hop-a-long but it seems there is still a twinkle in his eye!!

Continuing Professional Development

2009-04-28T19:50:00.009+01:00

Like many professionals, osteopaths have to complete and number of hours of continuing professional development (CPD). This can be tricky as most courses are held quite a distance from us so organising 'life' can be complicated and of course there is cost - not only the cost of attending the course itself but also cost of getting there and accommodation if necessary. Not forgetting loss of earnings for the duration of the course......

So it was a surprise to see a day course advertised about 30 minutes from here on the shoulder complex - complex being the right word. Shoulders are notoriously difficult to treat - they cannot be rested easily, mimic 'red flag' ie ~~get the person off the premises as quickly as possible~~ danger symptoms and seem to spread to the neck, back, other shoulder, big toe even (honestly - a patient this week complained of shoulder pain after stubbing his big toe!!)

The course was on instability and how to treat it. Usually we see a lot more of the opposite ie shoulders with too little movement rather than too much, but it was an accessible course and the chance to clock up some cpd!

The woman presenting the course treats lots of sportsmen and woman (including some of the Liverpool footie team) and had some rather dramatic dislocation stories to tell.......

It was a good day - caught up with a few familiar faces and found some new techniques which can be applied to different shoulder problems and amazingly enough there was a case history presentation about a shoulder problem which although not caused by a stubbed toe was being perpetuated by flat feet!!

Now you can bet I won't get a single shoulder problem booking in for the next 6 weeks!

Optical illusion.... or a glimpse of what might have been?

2009-04-26T09:57:00.007+01:00

This picture came home from school with Matthew this week......

(turn your head sideways to see what was really going on!)

Jos

2009-04-25T09:52:00.010+01:00

As mentioned in a previous post Jos is a special (needs) dog. After a very rough start in life - it took him 6 months to learn to wag his tail. He gradually settled down to a quiet life - just him and Jol - one man and his dog.....

- he was easily pleased with a walk and a stick (the bigger the better!)

Then I turned up....

Then those strange small creatures.....and curiosity on both sides!

...and then Vera - we were persuaded to get her because they 'matched'! and finally Pepper decided to unofficially move in.

When friends came to stay he was happy to share his space.....

And he took all this in his stride.

We think he is 13 but with rescue dogs that is always at best a guestimate. Lately the years have been catching up on him - going deaf, cateracts and arthriticy hips. Like most of us he still thinks he has the body he had a few years ago and goes charging out when the w word (walk) is mentioned. However, for him this means running/sliding down the ramp made for Matthew's wheelchair followed by two sharp 90 degree turns to get to the front garden and away.....

We think one of these mad dashes may have resulted in him straining his back - aggrevating an old injury from his sneaky sideways shuffles to get through the fence and away....(the old scally-dog that he is!)

This acute-on-chronic injury has resulted in nerve damage and his back legs are no longer doing what he wants them to and are giving way on him. He isn't in any pain but there is a definite look of confusion on the poor chap's face.

We took him to the vet on Friday, fully expecting it to be his last trip..... the vet agreed things were not good but suggested a corstisone jab to help reduce the inflamation which he thought was causing pressure on the nerve and new symptoms. He had a similar jab last summer for the arthritis and it did give him a new lease of life for a while - so we figured it was worth a try.

This morning he is better but the leg is still giving way on him so current situation is very much

Birth(day)s marriages and death

2009-04-21T18:03:00.006+01:00

First of all it is cough-ty birthday to my mum today. So happy birthday mum! Your present is in the shop (whoops! but better late and getting you something you want - that's my excuse anyway!)

Secondly, unfortunately it was the funeral of a little girl we know who went to bed one night and didn't wake up in the morning. Although she had cp, T was classed as being mildly affected and was at the time healthy so hearing of her death was a shock to me so I can't even begin to comprehend what it must have felt like to her family.

It is also the 1st anniversary of the death of another special kids child. Although I never met J or his family (my dad and brother did as they went to look at a car they were selling that might have been suitable for me) I knew J and his family through his mother's posts on the forum. She has continued to post - in fact today she took the time to post a lovely description of his final day and the comfort she has got from remembering how they spent that day.

So thinking of you both today.

(and the marriages bit - well as far as I know it is still on for Jack and T!!)

Magician Show

2009-04-19T20:43:00.006+01:00

Last Christmas, Matthew won a prize at Derian House's Christmas party. The prize was an hour's show by a magician.

Normally he only does shows in and around Manchester but kindly agreed to come up to do a show for us. He did a combination of magic tricks and balloon modeling.

There were about 10 kids mostly between 5-10 with a few older ones trying not to look as if they were enjoying themselves!

When he first came in, he did the familiar trick of finding something behind someone's ear - in this case it was a glowing red spot behind Jack's ear. It was very funny to watch - Jack got soooo frustrated not being able to see how/where it was going - almost to the point of getting stressy!!

When the main show started - the kids loved it - it was a toss up who would spontaneously combust with laughter first - Jack or another lad H.!

It was one girl's birthday today and another's last week (both sharing a name as well as birthday month) so they were both magic-ed a little something which went down very well....

and then he made the mistake of asking Jack what should have been a yes or no question...... 10 minutes later the trick continued (still that was entertaining for us adults who know Jack!)

Then it was my turn...... my prize was a bottle of wine, although for some reason Jack told the magician I didn't like wine and should give it to dad!!

We had planned to do an egg hunt and hid about 60 tiny eggs around the room. Most were found (and eaten) before the hunt officially began (and apologies, while I think of it if needed) to B's mum when she does the washing as I told your daughter to put some eggs in the pockets of her shorts......!

After lots of balloon modelling and even more balloon popping, a friend got out her parachute (like you do!) and there were more games with that....

Then a couple of rounds of pass the parcel, a few rounds of 'duck duck goose', the rules to which I am still a bit foggy about, but seem to involve me running around in circles a lot (no change there!) and then more balloon popping!

Finally a game of music statues (not always easy for some of the kids with involuntary movements!) but they all had fun and it felt so mean saying who was out each round!

Then a couple of rounds of pass the parcel .....

before clearing up, home, much needed bath and bed which for some reason was very easy tonight!!

Great way to round of the Easter holidays!

Day in the Life (again!)

2009-04-14T13:56:00.013+01:00

Even though Jenny Wren has finished her year thought I would continue with mine since I joined in a bit late!

Boys are still off school which means I am still off work.

The day started at stupid o'clock with Jos woofing madly. He is in ~~love~~ lust with the springer next door (or at least lust whilst she is on heat) I let him out and went back to bed (and was told by my neighbour later that when she got up she found his nose and half his face shoved into their cat flap trying to get to Bramble!!

Meanwhile Matthew and I had a second started the day with a cuddle whilst Jack listened to a CD.

After breakfast one of our carers came over and we took the boys swimming. Luckily the pool was warmer than previously (when their heating had broken down) and despite it being the school holidays almost empty.

No pictures of the swimming as cameras and water don't seem to mix which is a shame as Matthew was giggling his head off being jumped up and down in the water and Jack finally managed to jump in off the side (after being promised with a packet of Gogos!) But this is an impression of him swimming in the changing room afterwards!

Half an hour in the pool and 10 minutes in the jacuzzi made for a very excited and then floppy and then hungry Matthew so home and lunch.

Next job was to put all Matthew's wheelchair covers in the wash as he did that trick that only boys can do - 'dressing a bit too much to the left' and managed to by-pass his nappy and drench his trousers and seat!

A quiet afternoon followed - Jack wanted to play lego with me - which translated as me making things for him whilst he scoffed at Matthew watching In the Night Garden and then 10 seconds later was spotted laughing and dancing around with Iggle Piggle and the rest!

Later Jack admired ~~his~~ my handiwork!

Bit of a mystery followed when we found an unidentified screw which looked like it was important - but no idea what it had come off! It has now been put in a safe place until we find its rightful home (by which time naturally we will have forgotten which safe place we put it in this time!)

Dinner (we are still working on table manners!)

was followed by a bath along with a belated birthday present before bed!

Then after our dinner we felt it was our parental responsibility to help out with a few of these.....*

Happy Easter!!

* We added up a total of 20 eggs between them so figured they wouldn't miss a couple!

Now I know......

2009-04-10T09:49:00.004+01:00

......why Mr Skinny is long and skinny.......

It was a holiday physio session that then involved yoga and a funny rhyme that about your hand on your knee when you were doing the pretzel pose which is not easy when your brother is making you giggle by putting a vibrating snake on your toes.........

Then a bit of hanging around.....

....before a paddle with your brother and a stomp on a space blanket

Day in Pictures

2009-04-06T11:48:00.005+01:00

Have a friend and her daughter staying at our cottage for a few days.

Yesterday we went for a short walk and a long pub lunch........

....while we were waiting for food there was time for a sneaky mother and daughter hug.....

Then came back to see the fast growing and piglets

Then rounded the day off with an enjoyable bubble bath!!

Conversation snippet

2009-04-03T09:51:00.004+01:00

J: Will I get chocolate AND presents at Easter?

Me: (trying to get him into bed) If you are good.

J: Will I get go-gos

Me: If you are good

J: Did you get chocolate and presents for Easter when you were little?

Me: If I was good

J: Did you get go-gos?

Me: They didn't have go-gos then

J: Were you one of the first people?

Thanks mate!!

('self portrait' taken from here)

love is in the air......

2009-03-31T19:25:00.006+01:00

Jack and T have been good friends since nursery - exchanging bits of rubber under the school desk and other assorted 'treasures'.

Last week, as I was collecting Jack from school he said

'When will you marry me T?'

I told him you can't get married until you are a grown up. To which T replied very matter of factly -

'I'll marry you when I'm 10!'

Apparently when she got into her mum's car she told her mum she needed to take some money out of her back account because she had to buy Jack a wedding ring!

T's mum told me about this conversation and added that she hoped Jack was going to buy her a sparkly one as T likes sparkly things!

This is probably one of the reasons why they get on so well - Jack is a true magpie - a real lover of sparkly things!

That Friday was the school disco and Jack went off proudly wearing a collar and tie - he wanted to look smart for T! He wanted to go to a ring shop to buy T a ring but in the end was happy with a glow stick bracelet I managed to find for him instead!

When I went to collect him I was told that Jack had gone down on bended knee to T to ask her 'properly' and she had helped him do a handstand by grabbing him by the ankles and pulling his legs up in the air!!

Who knows what will happen with that pair when they get to 10 - or older! All I do know is that hopefully their friendship will continue in such a loving and unique manner!

What do you call.......

2009-03-28T19:35:00.008Z

A collective of retired teachers? Because we came across one today!*

We went to Matthew's school's Easter Fair and whilst having tea and cake (a completely altruistic activity - supporting the school etc) we got talking to a group of ladies across the table who turned out to have worked and since retired from the school going back the last 20 or so years.

The Easter Fair consisted of - apart from refreshments(!) - a tombola. Jack's rules are interesting to observe:-

1. Ignore the British love of queuing and go straight to the front.

2. Pay using someone else's money.

3. Rather than leave winning a prize to chance - very risky when chocolate Easter eggs are at risk look when putting your hand in the tombola drum to ensure you are picking, in this case, a bottle top with a number on it.

4.a Look at the number and the corresponding prize.

b. If corresponding prize is a Barbie Easter egg or anything that might be contaminated by being 'girlie' - reject.

c. If corresponding prize is Ben 10 related or just big - accept.

5. Continue until you have 100% success rate or until your mother stops you much to the mirth of the gathering crowd (your brother included).

6. Remember to thank S, Matthew's carer and stall holder who was in cahoots with you from the beginning - as she was at last year's Easter fair, and at the Summer fair, and at the Christmas fair...... (see a pattern anyone?)

We then bought a few raffle tickets in an attempt to redistribute some profits and then had a wander around the other stalls - egg bobbing was fun - and so so tempting to 'help out a little...'

Then my son the magpie found a box of trinkets (aka assorted keyrings) in a box under the table. I said he could have one - so can anyone tell me why and more importantly how he came out with 3?!

Then a quick bounce in the soft play section of the room before retreating with our bounty back over the border and home!

* guess it has to be a school of teachers doesn't it?!

Wheelchair woes!

2009-03-28T10:53:00.005Z

Matthew is a 2 wheelchair boy! He has a Tom Cross at school and a Panther at home that we bought privately. The panther has 2 cross over supports to keep Mr Floppy in place. The only trouble is Mr Floppy is also Mr Skinny, especially around the shoulders so these straps fall off easily. Tighten them and they dig into his neck.

So we decided to try out some swing away thoracic supports - curved shapes that attach to the side of the chair just under the arms and meet with a clip at the front. So far so good, the rep came out, we tried some and he looked good. So that was Matthew's birthday and Christmas money spent!!

6 weeks later and they supports have arrived and the rep comes out to fit them. Again all well.

This morning we put Matthew in the chair and there is a massive gap between him and the supports and he is flopping all over the place - he can even get his arm between the his body and the support.

Why?!!!!!

Yesterday Matthew did have a jumper on and today only a shirt, but the jumper was not a huge 3 inch thick one so unless he has lost a huge amount of weight in the space of 12 hours I am stumped - not to mention frustrated!

But luckily the rep is a member of the professionals section of special kids and seems to be on the computer almost as much as me and so almost immediately responded to my message to him asking advice. He thinks Matthew may need smaller supports........

Ho hum - back to the off the shoulder number for the next few weeks!

How not to sit in your wheelchair - and this was one of the better positions!!

Who needs a Commercial Mother's Day

2009-03-22T12:32:00.009Z

with apologies to those who have seen these else where!

It was Jack's homework for the weekend - to write a few lines about his mother - what she looks like, what she likes doing and then draw a picture of her!

I got a lovely present - a lovely card that said I will eat my vegetables in the middle! However, he quickly informed me that wasn't the case but he had just written that as the teacher had told them to write something inside their mother would like!

Can't complain really, he went off with Jol this morning and washed my car!

I also got some chocs and a bracelet from Matthew!

Happy Mother's Day to everyone, where ever your mother is!

Spring has sprung....

2009-03-21T14:39:00.007Z

...so we decided to go out and ~~spell~~ smell the daffodils. (Jack is getting very cocky with his spellings and so daffodil was one I gave him this morning!)

Jack kindly offered to push Matthew....

which they both enjoyed until.......

which they both thought was highly amusing! Do you know how difficult it is to tell a small child off when his 'victim' is laughing like mad?!!

Half way along the way Jack felt the need to 'express himself'......

And then we played Pooh sticks at a ~~stagnant~~ slow running stream (we were there a while!)

Anyway, on the way back we stopped off to see our new neighbours*

This not-so-little piggie oinked every time Jack ran passed while they both found highly amusing!

...and the not so new........ (from a distance!)**

.....before coming back and cooking a 5 minute chocolate cake

Later on we had a return visit (mainly because our carer, K, wanted to see the piglets!) where Matthew seemed intrigued with one of the lamb triplets while K did her best to persuade her mother they 'needed' a pet bunny!!

*the observant amongst you will notice a change of clothing - those pictures were taken last night as my camera battery died on me this afternoon!

** Deer for those with a small screen (no comment on eyesight!)

It's that time again....

2009-03-14T18:02:00.010Z

14th of the month so my second day in the life thanks to Jenny Wren

Due to February having 28 days, the 14th was the second Saturday of the month again so it was Sunbeams music group.

Only one child (Jack) this time as Matthew is at school this weekend - shopping for Easter and Mother's Day presents!

Then after a quick wash and brush out when Jack decided he wanted to look smart for music group

He is also discovering my (slightly doddgy) 80's CD collection and at the moment is into Joseph (and his amazing technicoloured rain coat (as it is called in this house!)) so did a request spot......

After that we and a couple of friends went to Asda for lunch

and then to the local soft play area

Jack came back and was immediately put to work by Jol to help bring the wood in for the fire (he was not impressed with having to do jobs!) but soon cheered up with some food inside him.

Jack went off for some quiet time which gave me half an hour to catch up on

and a few other things (aka facebook scrabble!)

before he had a bath, book and bed......

and then we went out!!!!!

A friend plays in a Pogues style band - Bag of Spanners and they were playing locally so we went to see them!

And so to bed........!

Bethany

2009-03-14T09:37:00.002Z

A fellow 'special kidder' has recently undergone a successful liver transplant. Here's Bethany's story

Lesson in Life

2009-03-12T08:41:00.003Z

Seems Jack had had his first lesson in not trusting women!

When I collected him from school the other day I asked how his day had been.

'There were some tears' was his semi-cryptic reply. On further questioning it seems a girl in his class had told him to write something rude on his classwork (which he did!) and of course got told off when the teacher saw it!

It seems, H, the girl in question is a bit of a minx as last week she had told another child in the class her spellings were wrong when they weren't during a spelling test so E missed out on her spelling certificate (and these things matter at 7!)

So a little chat followed about using your own judgment and not doing what people tell you without thinking of the consequences!

Another slip from the age innocence methinks!

Jack is happy......

2009-03-12T08:33:00.002Z

.....he finally has his first wobbly tooth! Matthew has had one for the last 6 months despite them getting their first tooth within an hour of each other as babies!

Get well soon dad!

2009-03-09T09:58:00.003Z

Had a phone call from my brother on Friday to say my dad had been feeling breathless and had called an ambulance and been taken into hospital. On talking to his friends, my brother had found out dad had been feeling rough for the last few days but not done anything about it despite them telling him see the doctor, so they were not surprised!

Anyway, after a slug of oxygen he started to feel better but they decided to keep him in and do some tests.... turns out he has a couple of clots on his lungs so is now on clot-busters and bed rest!

My dad is the proverbial creaking door medically so hopefully an enforced stay in hospital will give him the chance to have a good MOT and get all the other bits that he doesn't bother with looked at!

Yesterday I got Jack to make granddad a get well soon card and Matthew a happy birthday card for his carer at school (happy birthday S if you are reading!!) Jack's card was.... interesting.... covered in pirate stickers (he found them at the bottom of the cupboard!) and when I next looked he had written goodbye, goodbye, goodbye all over it. Slightly puzzled and alarmed to say the least, I questioned him about it.

'Well if someone goes away somewhere you say goodbye to them .....'

' ...... errr, yes.... technically....... but this isn't like going on holiday or something like that'

Think we need to have a chat about things......!

Today I shall be....

2009-03-05T16:16:00.003Z

Don't you just love school - letter comes home informing us that the following day it is world book day. They are keeping it low key - just send your child in dressed up as a book character from another time or place. They have 'kindly' kept us in the dark until the last minute so we wouldn't stress and run around buying costumes. Hum, not sure I am totally convinced on that one, I can see the logic, but a couple of days notice might have been a nice compromise!

Anyway, half an hour's brainstorming, a few rejections later and this was the result........

A prize of a bar of chocolate (clue in the prize!) to the first person who can guess the character!!

Some people are in the wrong job......!

2009-02-24T19:46:00.005Z

For the last 18 months or so Jack has been having group swimming lessons. Although he enjoys them, he doesn't seem to have progressed much but as there is a long waiting list for lessons around here he carried on going as it was 'better than nothing' and kept him used to 'swimming'.

I have taken Jack in the water, but, like most kids, he just wants to play when in the water with a parent so whilst fun, again he was getting nowhere fast.

To cut a long story short, I was talking to one of our carers about how I was getting less and less impressed with the instructor when she mentioned her friend who although has no formal teaching qualifications is studying at college (doing something totally unrelated) and works at the nearby caravan site as a life guard in the summer. She suggested they take Jack swimming without me to see what he could do on a 1:1 basis...... he went and enjoyed himself, and more importantly listened to what C wanted him to do and so has now gone a few times with her.

She has got him jumping in from the side, going completely under water (this from the boy who would shout for his towel if he got so much of a splash in his face). So this afternoon,unbeknown to Jack, I followed them down to the pool and sneaked into the spectators area and saw him do this afternoon did this.....

it was only a few strokes, but he did it on his own!!!!

(Not a very clear picture but you get the idea - I hope!)

All 3 of them seem to be enjoying their sessions so I think Jack is going to switch swimming 'teachers'!!

End of an era...

2009-02-18T21:22:00.004Z

Jack has been into Mr Men (obsessive is the word that springs to mind!) since the age of 3. So it was quite a shock when he announced at the weekend that Mr Men were babyish and he didn't like them anymore!

So into a (large) box went over 100 small paperback books, one annual, one book of Mr Silly funny poems, 3 large hardback books, one programme from Mr Men live. Next went 3 pairs of Mr Men pyjamas, one t-shirt, 2 long sleeve t-shirts, one dressing gown, 3 Mr Men dvds, 4 Mr Men videos, 2 Mr Men CDs, 3 posters, about half a dozen Mr Men figures, a Mr Bump waste paper bin, a handful of assorted Mr Men fridge magnets and about half of dozen Mr Men tapes!

With fortunate timing his new glasses were ready today otherwise his glasses (Mr Bump ones of course!) could have gone too and my myopic chum would have been a real life Mr Bump walking into walls etc!

Apparently Ben 10 is where it's at now!!

Here he is with his brother modeling his new (non Mr Men) specs!

A Day in my Life....

2009-02-13T15:11:00.012Z

Another bandwagon to jump on......a day in my life

Matthew woke at a respectable 6.45 am and so after a coming-into-consciousness cuddle followed by Jack coming in and turning on a CD (he is into 80's music at the moment!) We went downstairs for breakfast. First job is to feed the cats otherwise there will not be any peace!

The miaewy, brothers, as Jol calls them, sated it was our turn - Matthew has a belly full of drugs to wash his weetabix down!

On the second Saturday of each month we attend the Sunbeams music group at our local special needs school.

So off we go in the car - Matthew sort of strapped in but until I remember to buy one of those things to stop the belt going across his neck that is the best I can do!

Music group was fun, Jack especially enjoyed the tricks one of the members did with his diablo and even had a go himself.

One little mis-hap, Jack was fiddling with Matthew's birthday balloon when it came away and floated up to the ceiling! Luckily the cleaner was in cleaning another part of the school and came to the rescue with Henry the Hoover!

Then home where I was informed there had been a delivery for me.....

After some lunch a quick wash and freshen up (firstly evicting Vera from the stairclimber - those cats know how to sleep!)

Matthew settled down infront of the tv with what seems to be his favourite birthday present - a box set of In the Night Garden dvds - cue lots of happy squeals from the lounge!

Whilst Jack wrote a thank you email (that's modern technology!) to a friend who gave him a (very noisy) musical birthday card with to quote Jack 'a piece of paper' in it (it was money!)

Then our carer arrived and helped Jack with his homework

and then - a big milestone - his first valentine's card!

Then helped me make some chocolate hearts for Jol

Before bedtime (no picture of that - didn't want to wake them!)

Good night all!

More partying

2009-02-09T13:16:00.004Z

The birthday celebrations continued, this time it was Matthew's turn. He was having a pool party at school. Now school have my kind of pool - ie a warm hydrotherapy pool with music, lights and loads of toys aka sensory/swimming aids.

Jack was looking forward to this for many reasons: -1. He was getting out of school early (only 15 minutes, but 15 minutes is 15 minutes!) 2. He likes swimming in warm water. 3. He was highly amused by "a chair that goes in the water?!!" (chair hoist) and wanted a ride on it like he had last year and most importantly 4. he suspected there might be one or two presents for him!

So we set off.....

as predicted a good time was had by all and now 2 little boys are fast asleep in their respective beds - that school knows how to party!

2009-02-07T09:16:00.008Z

The bear’s (an explanation of Jack and Matthew’s nick name will follow in a future blog - memory permitting!) birthday is here. Many parents of special needs children have mixed emotions of the anniversary of their child/ren’s birth. Joy, in celebrating the auspicious event mixed with sadness at memories of what happened to cause their child’s disability and a sense of ‘what if...’ For some reason birthdays don’t do that to me, I tend to get those ‘pangs’ at other times - seeing Jack playing happily on the beach last summer was one time (thinking there should have been 2 little boys happily playing - Matthew was at the hospice - having fun no doubt but a different fun).

Anyway, birthday time is here again. Matthew's school have orgainised a pool party (in their very warm hydrotherapy pool) later in the week and we are invited to join Matthew and his friends for that followed by a birthday tea.

The day started (a tad early) with frenzy of unwrapping by Jack whilst Matthew giggled at the tambourine he was given (that Jack had already opened on the assumption that any present was automatically for him!) and joy exclaimed at a Roald Dahl dvd (we are currently working our way through his classics at bedtime)

whilst Matthew seemed pleased with his new hat (Jack took the photo by the way!)

I had told Jack he could have couple of friends over to play on Saturday. The exact numbers went up and down a bit with negoiation but we settled at 3 - unfortuantely one wasn’t able to come so are left with 2 (where’s the ‘phew’ icon when you need it?!) with a promise that C can come over one day next week.

Jack is ‘into’ pancakes at the moment and we were given a chocolate fondue for Christmas so a chocolate pancake party with Ben 10 cake for pudding was the order of the day......

(In my best ‘Big Cook’ voice) a grown up helper was also invited along and a few pass the parcel packages were made up - including some wrappings of bubble wrap for Matthew’s benfit but proved equally popular with the others! We did consider Musical Chairs but figured Matthew would have an unfair advantage over the others on that one!

Luckily it was a nice day so the trampoline was put to good use.......

And after a pancake-eating marathon there was just enough room for the chocolate fondue....

.......before birthday cake and then home time!