Saturday 30 April 2011

Sing-along-a-song

I have blogged before about J and his love of my IPhone 4 that he can use so easily to access YouTube and record images of himself with either the camera or the film camera.

Well, he has one YouTube clip of Bear in the Big Blue House singing the song 'Co-operation' and J tries to sing along to it. J recorded himself on the video element of the phone singing this song.

I found him pacing up and down the garden patio (happily pacing) with the phone close to his ear and was listening to his own recording of himself singing the song. There were bits missing and most words were not recognisable to anyone but me, but he paused at the right parts and was able to add the "ow" and the "umm umm" bits that filler the song between sentences. Where he did'nt know the words he stayed silent.

As he was listening to the recording he was also singing along to it perfectly out loud, and every word and "umm umm" or "ow" was in time to the milli second along with the recording. With some auto tuning and lip syncing he would rival Cheryl Cole (what, she does'nt sing live?!) for a hit. Add in some dancers, a ridiculous 'look at me' outfit (Gaga et al) and a Euro pop beat and it's number 1.

I was annoyed I did'nt have another camera spare to film him doing this. It really was quite amazing.
Since then he has recorded himself in various facial expression modes, changing the expression or blinking his eyes rapidly, and again he is in perfect sync with the recording.
The only thing I have to be careful of is him recording himself whilst I am chatting to the boys or on the phone. I hate hearing my own voice! J on the other hand seems to be loving it!

Saturday 23 April 2011

Wasting money

As I am now involved with more services in our area because of my youngest and his Nystagmus I have begun to see how much money is spent,and wasted, in resources which employ people to provide a service, a service which has little impact for the majority and is also a huge waste, when so many other more important services are being cut back or scrapped altogether.
Along the way with W, my youngest, we were referred by the paediatrician to a service which I was told provides help and support to children with a sight problem.
I was contacted within a few weeks by this service and a woman came out to visit at our house.
Our whole meeting was a very start stop affair. She handed me a leaflet on Nystagmus. I said as we had had the diagnosis months ago I already knew about it. The leaflet was a folded A4 piece of paper, so nothing very much more than a general outline of Nystagmus.
She then told me there was a group of mums that met up every two weeks and rotated it in each others houses. And then she said "oh but they have now changed that to every six weeks and not at houses anymore, just outdoor places such as the zoo or the theme park." So really this was an expensive meet up with other mums, in a place where I could'nt ask questions and sit and relax a little, more so chase a baby round and get bored having no-one to talk to as they were off chasing their children, but have to pay for the privilege.
Then she told me about the toy library. And wait for it - "oh but it closed a few weeks ago."
Then she told me about a teenage girl of thirteen who lived up the road. She had Nystagmus, but she also has a few major disabilities which are more of the issue with her. She wanted to get this girl to come to my house and visit me.
And finally when I asked what actual service does she provide apart from handing me information on things that have become obsolete  she said she could come to our house when he is eight years old and teach him to make a sandwhich. Yes, that's right. She would be paid to come to my house and show my son how to make a sandwhich. Of course I am far too lazy to do that myself.
Her team is made up of three people. So three people are paid to hand out this information and provide this service, but closing down vital Sure Start centres which are accessed by the whole community and provide information (up to date and not like this service) is deemed okay.
I know there are many parent focused groups out there, groups that are formed to source ideas and present to councils. But really, how much do councils take on board? Would they be bothered that so much money is being thrown at this service when it is not really providing much?
So all this woman offered me in the end was this teenager coming to my house. To be honest I felt very uncomfortable about it. I could explain and give reasons here if you find this odd, but I don't feel I have to justify myself in my own blog.
The woman called several times trying to arrange it with me until finally I plucked up the courage and told her that I felt uncomfortable with this. She became a little offish and then said "okay I shall close his file then" and hung up!
Waste of money. Waste of resources. Another council run service that misses the point of their existence. A meet up, run by this service, and held at the same council run place, every week/fortnightly would surely be better? Information leaflets made available to take home. Sharing stories and ideas with other mums. A place to feel secure in. How do they get it so wrong?

Friday 22 April 2011

Oh I do love to be beside the seaside

Down by the seaside. A place children love. Splashing in the water. Throwing stones into the waves or building castles in the sand. Eating ice creams that begin dripping the minute they are served. Listenting to the squeals and excited screams from the thrilled and enchanted children.The smell of suntan lotion and wilting cheese sandwiches.
It is a place J loves. If it were possible he would spend all days splashing in the water. He won't go in past his thighs but that is all he needs to have fun. Throwing stones into the small ripples of the waves that lap in around his feet.
I can just sit on a blanket and watch him at play. He looks round every so often to check I am still there.
The only time he needs a break is when he has to go to the toilet or he wants another ice cream.
Yesterday he obviously got the urge for a toilet break and instantly pulled the top of his shorts down revealing his bits. I thankfully was watching and called him over. I'm not sure who saw but I stopped him swiftly and took him up to the toilets.
And to change the subject slightly, the seagulls around here in Hastings are massive. Enormous even. They are like regular seagulls on protein shakes. I thought the first one I saw was a plastic model (it was on a roof) but it flew off, probably to go and catch a whale or something.
They strut around in pairs, kicking stones and eyeing you up for potential food. They are also camera shy as everytime I try to capture them they turn and flee. I will keep on trying though just to prove their gigantic size.

This Easter holiday has been made fanstastic by the glorious weather. Pure sunshine all day. Usually school holidays mean stress and tension but apart from the sleep issues with J and his hyperactive nature it has flown by with much joy and relaxation.

Thursday 21 April 2011

That old,outdated,discriminating word

What word? The word retard. I HATE it. It is only used nowadays to be rude towards others, others for the most who are not with a learning diffculty, but there are some disgraceful people who use it towards those in society who do have a disabilty.
I have blogged a few times about this word.
The latest person to use it? 'Lady' Gaga. Whilst trying to be hip and cool and oh so different she used the word to describe her retort for not copying another artists work.
Of course news broke of her usage of the word.
And of course the released statement from her camp claiming she is so sorry for using the word, and then bleating on and on with much contrition.
Why are the press jumping on the bandwagon though? Mock horror and outrage from them. The Sun being one of them. Well, The Sun can not stand in much condemnation over this 'Lady' as I have read in one of their columnists pages before now the word retard, used within a paragraph to describe the kind of viewer who would watch a certain programme they were reviewing.
This paper also employed the much dethroned from humour Frankie Boyle who saw fit to ridicule a disabled child not once, but twice (see my previous blogs about that).
Teenagers and immature adults use this word. Much sniggering and guffawing from them and a misguided feeling of being a comedian and exhalted to poplularity amongst their equally immature and poorly raised friends. It is not funny. It is not clever. It is discrimination and it needs to stop.

Monday 18 April 2011

RAC a man that can. KwikFit a man that can't.

Yesterday I was going to blog about the wonderful RAC. Today I am going to blog about the fairly okay RAC and the completly useless KwikFit.
Yesterday morning I found we had a slow puncture on my back tyre and on closer inspection could see something sharp imbedded into it.
A quick call to the RAC via the Motability special 'hotline' and the first RAC man was here within 45 minutes - even though it was not classed as an emergency as we were based at the holiday home and so were okay with J and his needs.
The RAC man was fab. He diagnosed it quickly (well it was obvious!). However I was worried he would inflate the tyre and do a quick repair, and send me off to KwikFit myself to get a replacement tyre on my own time ; this happened to me the last time I had a puncture and it was lucky I only had the baby with me as it was a school day, so no J and his silliness and noises to stress me and everyone else out.
This RAC man was amiable and lovely. He said he would call KwikFit and order the tyre (as my car is classed as a 'heavy load' - my bottom is not that big).
Tyre ordered, he booked a visit from the RAC team for today who would collect the new tyre and come and fit it for me. He said he did not expect me to travel the 30-40 minute car journey to the nearest KwikFit with all my children in tow. He was lovely.

Today came around, and as promised an RAC man came out at the time stated. I did think it odd that he had'nt collected the tyre first but it was his time he had wasted as he then had to go out and collect it and come back to me. Simple enough? Why of course not!
KwikFit had ordered the wrong tyre! (I heard the RAC man on the phone to them ordering the correct tyre so it is their fault)
So RAC man comes back to tell me this.
He tells me the right tyre has now been ordered but will not be in till tomorrow.
This RAC man was hinting that I should go and collect it and get it fitted myself.
I hinted back that I was not traipsing all that way, with three children, one of which has learning difficulties and would be absolutely nutty in the waiting room at KwikFit, (who never seem to be able to fit a tyre 'Kwikly' rather they take their time faffing about ).
RAC man is not billed personally for doing this job. So RAC man can do it.

Funny how it all comes down to who you get coming out as to who understands and who wants to go that extra mile to help a stressed out mum with one flat tyre and three children all with different needs.

So todays RAC man has booked the job for tomorrow and has said he will inform the call centre to advise the man on the job tomorrow to get the tyre first to save time.

KwikFit (I won't name the location) will be getting a complaint. How difficult is it, for a mechanic company, (who specialise in tyre replacements) to order the wrong tyre - and not have it in stock anyway? My car is not rare. My car is not unusual. I don't have chavtastic extra wide tyres with which to pimp my car with. So to not have it in stock seems ridiculous.

Meanwhile I have a car sitting lopsided on the drive outside the caravan. Good job we don't need to go home for a week!

Sunday 17 April 2011

Sleep damn it!

One am. That is 1am. The time J finally went to sleep this morning. The night before - 12.30 am. The night before that - 12.20am.
He sleeps for a few hours and then is awake and making noises.
Pacing the floor. Humming. Head banging. Door slamming. Making his echolalic phrases "ah starrr eee jush one" over and over and over a-flipping-gain. Grinding the lever down on his magnetic drawer. Going back and forth to the toilet. Opening my door and yelling "phone" (as he wants my I phone). Stamping around with all the grace of a trained herd of elephants doing a Bonnie Langford course on tap dancing and running when they see Lionel Blair wanting to join in ( you have to be over 30 to know who they are!)
And ulitmately waking my other two children up, plus the dogs who join in with their very own chorus of 'see how many times your tail can bang the wall before she tells us to shut up'.
When school is back from term holidays (and bank holidays and Royal Weddings) I am on that phone to the paediatrician and demanding more than the sleep clinic farce of time wasting waiting on a list for 12 months and form filling (which I have already done years ago).
Oh and what is that I see aloft in the sky at night? Is is a moon? Is it becoming full? Oh fantastic! Hello sleepless nights and moody days.
Sorry for the sacrastic nature of this entry but come on, we have been enduring this sleeplessness for years and no-one, not even the 'professionals' are bothered to help. Sarcasm is a coping method rather than banging my own head against a wall and joining in with J.

Friday 15 April 2011

Blue Badges and Car Parks.

On a recent excursion to Hastings sea front I had to park in the council owned and run car park that services the sea front and all the amenities along there.
As we were with J I was able to use the Blue Badge. As with everywhere new we park when using the badge I always check whether it is free to park or if we still have to pay. The majority of car parks I have used around the country are free for Blue Badge holders, though some do have the exception that only the vehicle linked to the badge is allowed to park, whereas others are happy (and understanding) that another vehicle may be being used by the actual holder of the badge.
In this Hastings carpark it stated the following :

'Vehicles displaying a valid Blue Badge may park in the designated bays free of charge. If no designated bay is available they may park in an ordinary bay but the usual tariff applies.'

Tell me what is the logic of this? Surely the fact a car is displaying a valid badge is enough? Why is it only if they park within a designated bay that the fee is free? Add to this that there were twelve designated bays compared to the three hundred odd ordinary bays.
Where I live in Hampshire there is a carpark that used to be free. Then when a large Swedish company opened its big blue and yellow doors the council decided to start charging people to park (even though the Swedish shop had its own multi storey carpark).
The council decided to charge everyone to park. They had a thirty minute free part, but a ticket still needed to be procured from the machine and displayed in the car with this information on.
They had this rule even for holders of the badges.
Now it would have been sort of okay had they had plenty of machines for tickets, but they space them out and so (for the most) people with disabilites still had to traipse over to a machine, press the green button, secure the free ticket (or pay for a longer stay), take it back to their car, and then proceed to go shopping.
It seemed the council were happy to charge people with disabilites for parking.
Then it all changed. No fanfare. Just a sign up upon each ticket machine now telling people that a valid badge holder can now park for three hours, for free.
There must have been plenty of complaints as to have made this change occur.
My opinion is that there should be a blanket allowance country wide that in any carpark a badge holder (in any vehicle not just the car linked to them) may park for free, in any bay. Councils need to stop being crafty and start being kind.

Sunday 10 April 2011

A little paragraph I came across

This is a short piece I came across and is something that rings very true for me, so I thought I would share....

"I must learn to love the fool in me—the one who feels too much, talks too much, takes too many chances, lacks self-control, loves and hates, promises and breaks promises, laughs and cries. It protects me against that utterly self-controlled, masterful tyrant whom I also harbor and who would rob me of human aliveness, humility and dignity, but for my fool." ~
Dr. Theodore I. Rubin

Friday 8 April 2011

Ear ache

J was brought to my front door today by the school van escort. I usually meet him outside the house when they pull up. The escort needed to pass on information from the school that J had been upset, crying and pulling/rubbing his ear. He was very upset still as he walked through the front door.
They had written in the home school book the same thing.

I looked and could not see any redness either on the outside of the ear or in the entrance.
I dosed him with children's Nurofen.
I telephoned the GP.
I was booked a slot for a telephone consultation after describing the problem and the fact I also had two other children with me. J is a bad patient in terms of being examined and the wait before hand is hard for him.
I received a call within five minutes asking me to take him in.
Upon arrival we were ushered into a side room away from the main reception, much to the tuts from a gentleman waiting in the seated area with a female companion.

We waited for twenty minutes and were then seen.
The female GP was amiable and understanding of J and listened to me when I explained he would not be examined of free will.
I had to grapple him and hold him in an almost headlock so she could look inside the ear canal with a light.
It was inflamed and red.

A quick print out of the prescribed antibiotics and we were off.

Now, I have to thank firstly the school staff who were on the ball with this. When he came home he was not ear pulling or rubbing at all. I could easily have taken his crying as a sign he had been upset by something at school, not by the reasoning he was in pain.
I then am grateful I pursued my instinct in calling the GP. Again I could have medicated him with pain relief and presumed it was a headache.
Then finally the staff at the GP clinic were swift, non-questioning and polite to all of us.

All the boys were well behaved.
No crying from them, apart from J panicking that the GP was going to do something terrible to him.

He has now had two doses of the penicillin and topped up with pain relief.

This side of his disability is so frustrating and so sad. He can not tell us what is wrong. We have to guess from clues he gives off. Clues we could miss if we are busy or not focusing.
He is sleeping now thanks to the pain relief calming him enough to drift of without the usual pacing around the floor.

Tuesday 5 April 2011

Swim Boy

J has been going to swimming lessons with his class at the local swimming pool.
This only occurs once per school year however as they block book two weeks worth for each group.
J has never been a fan of the pool.
I have mentioned before I think it is to do with the echo and noise and also that he feels unsafe with the danger of slipping and being out of his depth.
I handed his kit into the school reception on Monday and asked them to take it down to the classroom as he was saying "goodbye swimming" over and over again and did not want to take the kit bag with him.
I had a note written in his home-school book on Monday evening asking me to send his kit in.
I replied I already had.
I see his teacher this afternoon and she tells me they could not find it. He had hidden it!
They eventually find it inside one of the teachers lockers where they keep their personal belongings!
He re-hid it again.
They found it.
He hid it again.
They removed it from the vacinity and even though he protested upon alighting the school bus, knowing he was heading off to the swimming baths, he did actually enjoy the lesson - according to the staff.

He is a cheeky young man and so very clever in his own way!