I received the letters through the other day from the paediatrician. She has written to quite a few people and really is worth her weight in gold.
I now know the GP has the letter stating she is to prescribe melatonin. The blood test forms (there are loads of them as she is testing him for lots of things such as thyroid (for which I suffer from), diabetes, iron level, liver, the Smith Magenis, and so on) I now have in my possession.
She has asked for the Occupational Therapist to contact us to arrange the soundproofing on the top floor so that J can go back up there and not disturb the household when he is jumping around. Now although she has written to them, does not mean I will hear a peep. We are still 'at the top of the waiting list'. I have been given that line for what seems like years.
What will be a huge ordeal for J is the blood tests. They have decided that he will have them done fully concious at the children's clinic. Oh how I wish they would take me seriously when I say that he will not allow them to touch him, let alone keep still, have a band wrapped tightly around his upper arm, and a needle inserted into his vein, with several vials being used to collect his blood.
His one and only blood test in his life was at age four (ish).
There we had to go along to a special childrens clinic again.
There we learnt just how strong he was.
It was me sitting in the chair holding him on my lap. His father kneeling on the floor holding his legs together to stop him kicking out.
A nurse either side to hold him straight. A plebotamist to try to extract the blood.
Then another nurse came in to hold his head still.
And another came in to hold what ever other body part he was moving.
He had turned beetroot in colour and was screaming.
So change of tact.
Let's extract the blood from the wrist.
Repeat the same scenario as above.
So they moved on to his thumb.
It took half an hour to get even a quarter of the vial filled with blood which was squeezed drip by drop from his thumb, all the while he is still screaming.
I have the appearance of a wrestler - all sweaty and bruised.
J is now a shade of purple.
I vowed never again.
And now as J is nine years old he is even stronger so will be fighting even harder.
So here I am again. Battling for someone to believe me that he won't allow any blood to be taken from him unless he is sedated.
But because the childrens clinic are so good with this situation it will be fine.
Oh yes, because J will sit and watch a DVD on the screen and not realise that there is a metalic sharp pointy device headed for his uncurled arm. And yes enough soothingly patronising comments are really going to make all the difference to a child who has no idea what you are explaining to him and no idea what the hell is happenening, apart from a lot of noise, lights, the smell of medical equipment, lots of chatter and me trying to keep him calm and still - and that is before we enter the room of doom.
So it is with trepidation that I take him for these tests. And no doubt we will then be told he needs sedation.
Got to love the time wasting eh?!
Tuesday, 28 June 2011
Saturday, 18 June 2011
An MP with another stupid idea!
Every now and then something or someone comes along and opens their mouth, spilling out their carefully thought out words, and makes the world wonder how they ever thought their diatribe was ever going to be acceptable.
The latest person (who holds a position of power) is Philip Davies, a Conservative MP. That will be the same Conservatives that are cutting many resources and funding to disadvantaged and disabled people already (and countless other cuts to the rest of the country's hard working people) and who are mainly educated at Eton et al (meaning they come from money and have never experienced hardship - unless you count the day the gardener didn't trim the hedge and spoilt their view from the oak lined library in the west wing of mummy and daddy's palatial mansion).
There is a link here for you to follow so you can read in full his statement, and the reply from Dame Anne Begg , who chairs the Work and Pensions Select Committee.
http://uk.news.yahoo.com/fury-mp-says-disabled-less-145735024.html
To surmise, this MP has this extraordinary idea that disabled people are beneath the rest of society. Why else would he suggest they should work for a wage which is below the national minimum wage?
The suggestion that he has any idea of the foundation of his belief stems from him saying 'he had spoken to people with mental health problems during a visit to the charity Mind and found they were "quite accepting" of the fact they would be overlooked.'
'Quite accepting'. Did they actually say they would be happy to be employed for a pittance and lack of respect? I don't think so.
This link is a direct response from Mind in regards to his comments attributed to his visit -
http://www.mind.org.uk/news/5218_mind_responds_to_statement_by_philip_davies_mp
He goes on to explain that in society if a person with a disability goes up for the same position as an able bodied / neuro typical person, that they will be over looked for the person minus a disability.
Herein lies the problem and the problem is only being exacerbated by Mr Davies by suggesting that employers can now offer the same job to a disabled person and save themselves some money in the process.
If we are ever to have an even balance in this country, and indeed this world, then this out dated notion of thought needs to be replaced with common sense (something that this MP does not seem to have) and a modicum of decency.
It is amazing that he is so committed in his belief that he has solved the problem of disabled people on benefits and struggling companies that need to draw in the purse strings.
Here's an idea Mr Davies - why don't you work for less than the minimum wage? There are plenty of manual jobs out there for you. You could work ten hours a day plucking chickens on a factory line and be paid a handsome sum of £3.00 per hour. That is £30 per day gross! Wow! Pop the Krug corks now and celebrate eh? And hey, look at the bright side...you will always have chicken to eat on the table at home.. Plus the chicken factory owner will be happy he can pay you less than the person standing next to you, doing exactly the same job, the same hours, and the same level of output. Oh and of course whilst you are working there you are not sitting in your office thinking up ridiculous and deeply offensive ideas that will try to put all the hard work and effort of all those that champion disabled people back ten years.
Win win all around I do believe.
Click here to see more from this man and his way with words...
http://www.twitlonger.com/show/b6m275
The latest person (who holds a position of power) is Philip Davies, a Conservative MP. That will be the same Conservatives that are cutting many resources and funding to disadvantaged and disabled people already (and countless other cuts to the rest of the country's hard working people) and who are mainly educated at Eton et al (meaning they come from money and have never experienced hardship - unless you count the day the gardener didn't trim the hedge and spoilt their view from the oak lined library in the west wing of mummy and daddy's palatial mansion).
There is a link here for you to follow so you can read in full his statement, and the reply from Dame Anne Begg , who chairs the Work and Pensions Select Committee.
http://uk.news.yahoo.com/fury-mp-says-disabled-less-145735024.html
To surmise, this MP has this extraordinary idea that disabled people are beneath the rest of society. Why else would he suggest they should work for a wage which is below the national minimum wage?
The suggestion that he has any idea of the foundation of his belief stems from him saying 'he had spoken to people with mental health problems during a visit to the charity Mind and found they were "quite accepting" of the fact they would be overlooked.'
'Quite accepting'. Did they actually say they would be happy to be employed for a pittance and lack of respect? I don't think so.
This link is a direct response from Mind in regards to his comments attributed to his visit -
http://www.mind.org.uk/news/5218_mind_responds_to_statement_by_philip_davies_mp
He goes on to explain that in society if a person with a disability goes up for the same position as an able bodied / neuro typical person, that they will be over looked for the person minus a disability.
Herein lies the problem and the problem is only being exacerbated by Mr Davies by suggesting that employers can now offer the same job to a disabled person and save themselves some money in the process.
If we are ever to have an even balance in this country, and indeed this world, then this out dated notion of thought needs to be replaced with common sense (something that this MP does not seem to have) and a modicum of decency.
It is amazing that he is so committed in his belief that he has solved the problem of disabled people on benefits and struggling companies that need to draw in the purse strings.
Here's an idea Mr Davies - why don't you work for less than the minimum wage? There are plenty of manual jobs out there for you. You could work ten hours a day plucking chickens on a factory line and be paid a handsome sum of £3.00 per hour. That is £30 per day gross! Wow! Pop the Krug corks now and celebrate eh? And hey, look at the bright side...you will always have chicken to eat on the table at home.. Plus the chicken factory owner will be happy he can pay you less than the person standing next to you, doing exactly the same job, the same hours, and the same level of output. Oh and of course whilst you are working there you are not sitting in your office thinking up ridiculous and deeply offensive ideas that will try to put all the hard work and effort of all those that champion disabled people back ten years.
Win win all around I do believe.
Click here to see more from this man and his way with words...
http://www.twitlonger.com/show/b6m275
Saturday, 11 June 2011
Having a 'smashing' time
So J and his headbutting. Something I have blogged a few times about before.
Lately it has become a daily occurrence and one that he does when he does not get his own way.
It centres around food and his demand for his favourite (or rather the only limited foods he will eat) foods.
As I have also mentioned before, albeit briefly, he has no stop mechanism when eating. If he were to be supplied with a never ending supply of chips or chocolate (yes not good foods to be in your limited intake I know) he would eat them until he was sick, then eat more.
As we are awaiting the genetic testing to be done we are in limbo over the other possibilities of the root cause of his disability.
It has been suggested that he has Smith Magenis Syndrome. (find out more here - http://smith-magenis.co.uk/index.php?page=what-is-sms ) This is closely similar to autism and its traits, although there are differences in facial appearance (not in all SMS children/adults).
With SMS there is a general problem of food intake being too great and the inability to not feel full or to stop eating. This is not pica, where the person will eat anything, this is more to do with gorging on favourite foods.
A lot of SMS people are overweight/obese because of this.
J has 'weight issues' but as he is also very tall for his age (at age nine he wears 12-13 year trousers and a medium in adult t-shirts (more for the shoulder width as they always hang too low) he is not considered to be vastly overweight, although I do have to keep a close eye on this, and which is why the kitchen has a lock on the door.
Until the genetic tests are completed we will not have an answer, and so I will not wax on about SMS until there is a confirmation.
Anyway back to the head banging....
The other morning before school, he was all dressed and ready to go, we were just waiting for the transport vehicle to come and collect him. He wanted some biscuits he had spied in the cupboard. I said no. So he went and banged his head on his favourite object, the door frame of the front room/lounge. I ignored him - as per the psychologist suggestion. So he went into the dining room, which has a door at the back that leads into the backroom/conservatory. This door has glass panels in to allow light in through from the back room. I heard glass shatter. I knew what had happened. He had head butted one of the panes. Now amid me trying to keep dogs and children away from the shards of glass all over the floor, I had J who now decided he would run back and forth panicking about what he had done.
I managed to clear the mess up safely, and I now have the cardboard from a Rice Krispie box brown taped up over the broken pane on either side.
So I can add another expense to the ever growing pile of things that need to be done. At least he didn't hurt himself, or anyone else.
Lately it has become a daily occurrence and one that he does when he does not get his own way.
It centres around food and his demand for his favourite (or rather the only limited foods he will eat) foods.
As I have also mentioned before, albeit briefly, he has no stop mechanism when eating. If he were to be supplied with a never ending supply of chips or chocolate (yes not good foods to be in your limited intake I know) he would eat them until he was sick, then eat more.
As we are awaiting the genetic testing to be done we are in limbo over the other possibilities of the root cause of his disability.
It has been suggested that he has Smith Magenis Syndrome. (find out more here - http://smith-magenis.co.uk/index.php?page=what-is-sms ) This is closely similar to autism and its traits, although there are differences in facial appearance (not in all SMS children/adults).
With SMS there is a general problem of food intake being too great and the inability to not feel full or to stop eating. This is not pica, where the person will eat anything, this is more to do with gorging on favourite foods.
A lot of SMS people are overweight/obese because of this.
J has 'weight issues' but as he is also very tall for his age (at age nine he wears 12-13 year trousers and a medium in adult t-shirts (more for the shoulder width as they always hang too low) he is not considered to be vastly overweight, although I do have to keep a close eye on this, and which is why the kitchen has a lock on the door.
Until the genetic tests are completed we will not have an answer, and so I will not wax on about SMS until there is a confirmation.
Anyway back to the head banging....
The other morning before school, he was all dressed and ready to go, we were just waiting for the transport vehicle to come and collect him. He wanted some biscuits he had spied in the cupboard. I said no. So he went and banged his head on his favourite object, the door frame of the front room/lounge. I ignored him - as per the psychologist suggestion. So he went into the dining room, which has a door at the back that leads into the backroom/conservatory. This door has glass panels in to allow light in through from the back room. I heard glass shatter. I knew what had happened. He had head butted one of the panes. Now amid me trying to keep dogs and children away from the shards of glass all over the floor, I had J who now decided he would run back and forth panicking about what he had done.
I managed to clear the mess up safely, and I now have the cardboard from a Rice Krispie box brown taped up over the broken pane on either side.
So I can add another expense to the ever growing pile of things that need to be done. At least he didn't hurt himself, or anyone else.
Sunday, 5 June 2011
Drawing what he sees, what he feels?
What do you make of this picture J has drawn? I put it up on my Facebook page a few days ago and the response seemed to be either of the following :-
J is performing on a stage to an audience OR
J is in a bubble, his own world, and the people outside it are you and me who can not get inside his world.
This magnetic drawer is a favourite of J and I have captured many drawings he has created over the last year.
I find his drawings reflect his emotions and interests and as he can not express by words how he feels or what he experiences I look to his artwork for clues.
It is amazing what you can draw on (no pun intended!) when you look at his work.
Saturday, 4 June 2011
Head banging damage
This is J's latest self harm damage. Near constant head banging against any hard surface. He even uses the phone as a weapon to smash against his head. The car is not a head bang free place either as he will either hit his head against the window or he will head-butt the seat in front. The area is very swollen and lumpy and looks more sore and damaged than this photo is showing.
Friday, 3 June 2011
Put your right foot in.....
"Oooooooh ee okee cokee, ooooooh okee okee, knees bend, arm wev, wah wah wah"
Yes that good old action song has seen a lot of action in our household recently. Trouble is J only has the attention span of two revolutions of the song, so we sing the same verses again and again.
He's very good at the words, albeit missing out certain ones and mispronouncing others, but any stranger would immediately guess the song from his version.
The actions are a little hit and miss, but hey, it's good exercise for this rather wobbly mummy tummy and I don't care if people think I have left a few marbles in my handbag at home.
I see it that if we all participated in a little more hokey cokey and little less moody mithering the world would be a much happier place.
All together now "oooooh hokey cokey cokey, oooooh hokey cokey cokey" ( I've started you off , now carry on.....)
Yes that good old action song has seen a lot of action in our household recently. Trouble is J only has the attention span of two revolutions of the song, so we sing the same verses again and again.
He's very good at the words, albeit missing out certain ones and mispronouncing others, but any stranger would immediately guess the song from his version.
The actions are a little hit and miss, but hey, it's good exercise for this rather wobbly mummy tummy and I don't care if people think I have left a few marbles in my handbag at home.
I see it that if we all participated in a little more hokey cokey and little less moody mithering the world would be a much happier place.
All together now "oooooh hokey cokey cokey, oooooh hokey cokey cokey" ( I've started you off , now carry on.....)
Wednesday, 1 June 2011
Panorama and how YOU can help
If you watched the Panorama programme on BBC1 yesterday you will hopefully be wanting to do something about the disgusting treatment our special needs community receives at the hands of some 'care' workers.
The National Autistic Society have launched a campaign and you can lend your voice via a click of the mouse and a few strokes of the keyboard.
Follow this link to make a difference -
http://e-activist.com/ea-action/action?ea.client.id=10&ea.campaign.id=10762
If you missed the episode you can go to BBC Iplayer and download it on your laptop/computer. I warn you though that it makes for very hard viewing and is especially hard if you have a special needs child or adult.
For more news that has resulted in the airing of this programme please see this link -
http://www.bbc.co.uk/news/uk-13548222
We cannot allow this practise of uncare to continue. Please lend your voice. Thank you.
The National Autistic Society have launched a campaign and you can lend your voice via a click of the mouse and a few strokes of the keyboard.
Follow this link to make a difference -
http://e-activist.com/ea-action/action?ea.client.id=10&ea.campaign.id=10762
If you missed the episode you can go to BBC Iplayer and download it on your laptop/computer. I warn you though that it makes for very hard viewing and is especially hard if you have a special needs child or adult.
For more news that has resulted in the airing of this programme please see this link -
http://www.bbc.co.uk/news/uk-13548222
We cannot allow this practise of uncare to continue. Please lend your voice. Thank you.
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