Showing posts with label information. Show all posts
What Is Cerebral Palsy?
Monday, 6 April 2009
As you know my youngest son, Deion has Cerebral palsy, I was talking to Trojan the other day and he rightly pointed out that not everyone knows what that is exactly. After he did the amazing 'Yellow Lightning' comic book for Deion, one of his work colleagues asked him about Deion and Cerebral Palsy.
I'm not an expert...except on Deion's Cerebral Palsy and how it affects him... but here a few facts...
Cerebral Palsy is a broad term used to describe a group of chronic movement or posture disorders. “Cerebral” refers to the brain, while “Palsy” refers to a physical disorder, such as a lack of muscle control.
Cerebral Palsy is not caused by problems with the muscles or nerves, but rather with the brain’s ability to adequately control the body. Cerebral Palsy can be caused by injury during birth, although sometimes it is the result of later damage to the brain. Symptoms usually appear in the first few years of life and once they appear, they generally do not worsen over time.
Deion was born 12 weeks early, and had a severe brain hemorrhage at 4 days old, affecting a large part of his brain, and the ventricles in the centre of his brain also swelled leaving the rest badly scarred.
As the right side of Deions brain was affected the most, he has no use of his left side, but it affects both his legs and all his muscles. Its called triplegia.
Of course, there is so much more to it, and there is a huge range scale of how it affects children.I know lots of kids with Cerebral Palsy, and you would never know there was anything wrong, others are severely limited and speech, eating and even blinking can be affected. Deion is not affected intellectually, just physically, but this is not always the case.
Deion has the type of Cerebral Palsy that means his muscles are tight, so he has physiotherapy and a series of stretches and exercises to help lengthen and release the tight ones, and others to help strengthen the weak ones. Without them, Deion would find it hard to sit straight, hold his head or use his arms.
He has an occupational therapist to help with his hands, she makes him special splints to stop his hand bending over at the wrist, and gives us exercises to help him with his grip.
The speech and language therapist helps with...wait for it...no not speech LOL! chewing and swallowing...anything to do with the mouth and throat muscles. She tells us what he should and shouldn't eat, consistency, texture e.t.c so he doesn't cough and aspirate while eating.
So these are the main ways that cerebral palsy affects Deion, it is different for every child depending on what part of the brain is injured, and how extensively...it's sort of like asking 'how long is a piece of string?'
Personally, I think the brain is magical and can often find other ways to function. When Deion was six days old the doctors told us he would never smile, never sit up, never speak...I'm off for a refund now...because I can't get this child to shut up for five minutes!!!
Posted in cerebral palsy, Deion, disability, information, special needs, Trojan, trojan's corner by Sally's World | 6 comments
Email this postFreedom Of Information.
Saturday, 24 January 2009
This is something that many parents will find helpful. We are so often left in the dark as to why decisions are made about our children, and often find it hard to get our hands on results e.t.c and who is responsible for them.
I have had to go through this process a few times over the years, and I only knew I could because Dave's brother works within the system and opened my eyes to my options.
The information should be more freely available.
So here I am doing my little bit to try and make sure that other families can access the information they need.
I hope someone finds it helpful.

How to make a request
Any person can make a request under the Act - there are no restrictions on your age, nationality, or where you live.
All you have to do is write to (or email) the public authority that you think holds the information you want. You should make sure that you include:
your name
an address where you can be contacted
a description of the information that you want
You don't have to mention the Freedom of Information Act, but there is no reason not to if you want to.
You should try to describe the information you want in as much detail as possible - for example "minutes of the meeting where the decision to do X was made", rather than "everything you have about X". This will help the public authority find the information you need.
Public authorities must comply with your request promptly, and should provide the information to you within 20 working days (around a month). If they need more time, they must write to you and tell you when they will be able to answer your request, and why they need more time.
What you can ask for and who you can ask
The Freedom of Information Act applies to all 'public authorities' - this includes
central and local government
the health service
schools, colleges and universities
the police
lots of other non-departmental public bodies, committees and advisory bodies.
You can ask for any information at all - but some information might be withheld to protect various interests which are allowed for by the Act. If this is case, the public authority must tell you that they have withheld information and why.
If you ask for information about yourself, then your request will be handled under the Data Protection Act instead of the Freedom of Information Act. You have slightly different rights to this information, different fees apply and public authorities have longer to respond to these requests.
What it costs
Most requests are free. You might be asked to pay a small amount for making photocopies or postage.
If the public authority thinks that it will cost them more than £450 (or £600 for a request to central government) to find the information and prepare it for release, then they can turn down your request. They might ask you to narrow down your request by being more specific in the information you're looking for.
I have had to go through this process a few times over the years, and I only knew I could because Dave's brother works within the system and opened my eyes to my options.
The information should be more freely available.
So here I am doing my little bit to try and make sure that other families can access the information they need.
I hope someone finds it helpful.

How to make a request
Any person can make a request under the Act - there are no restrictions on your age, nationality, or where you live.
All you have to do is write to (or email) the public authority that you think holds the information you want. You should make sure that you include:
your name
an address where you can be contacted
a description of the information that you want
You don't have to mention the Freedom of Information Act, but there is no reason not to if you want to.
You should try to describe the information you want in as much detail as possible - for example "minutes of the meeting where the decision to do X was made", rather than "everything you have about X". This will help the public authority find the information you need.
Public authorities must comply with your request promptly, and should provide the information to you within 20 working days (around a month). If they need more time, they must write to you and tell you when they will be able to answer your request, and why they need more time.
What you can ask for and who you can ask
The Freedom of Information Act applies to all 'public authorities' - this includes
central and local government
the health service
schools, colleges and universities
the police
lots of other non-departmental public bodies, committees and advisory bodies.
You can ask for any information at all - but some information might be withheld to protect various interests which are allowed for by the Act. If this is case, the public authority must tell you that they have withheld information and why.
If you ask for information about yourself, then your request will be handled under the Data Protection Act instead of the Freedom of Information Act. You have slightly different rights to this information, different fees apply and public authorities have longer to respond to these requests.
What it costs
Most requests are free. You might be asked to pay a small amount for making photocopies or postage.
If the public authority thinks that it will cost them more than £450 (or £600 for a request to central government) to find the information and prepare it for release, then they can turn down your request. They might ask you to narrow down your request by being more specific in the information you're looking for.
Posted in FOI, freedom of information, government, information, parenting, test results by Sally's World | 0 comments
Email this postTrojan’s Corner
Friday, 16 January 2009

For those of you who follow the blogs in any way, you’ll know exactly who Trojan is. For those of you who are brand new…
Trojan is a close friend of mine, and he is the one behind the whole blogging idea. We work well together because he has all the technical know how and I just have plenty to say! Trojan strongly believes in what I do with the t-shirts and the charity, and will be getting more and more involved in both those things as time goes on.
For as long as I’ve known Trojan, he has been into taking photos; he always has his camera with him and snaps away all the time. This is great for recording those memories for those of us who always forget our own cameras, or forget to use the bloody thing even if we do have it.
Of course, it’s also a bit of a pain in the arse because Trojan has a love of ‘natural shots.’ Which roughly translates into him catching people in embarrassing moments or while they are yawning or stuffing food in their mouths. And if you want to get up to anything slightly illegal/immoral, forget it if your with Trojan! It will recorded in glorious, immortal Technicolor!
I’m not going to pretend I always got it, often he’d be snapping away and I’d be all like “erm...Trojan, it’s a gate!” to which he’d just smile and continue with shots of wildlife/flowers/buildings/lampposts. But once I saw the photos and what he’d done with them, I got it. He has a great eye, and seems to be able to capture art through the camera lens. Something I admire because about 80% of the shots I take are of headless people, my own thumb or look like they are taken at midnight...in a snow storm…in gale force winds!
To show off some of his brilliant photos Trojan has a blog. It’s called Trojans Corner, and not only are the photos of the places he’s travelled brilliant, it’s a great way to find out more about him and those places. Its fun and informative, he talks about many of the things that interest him, and he has many interests and strong views and is certainly worth getting to know.
So take a look at his blog on http://trojansgallery.blogspot.com/
Take care
Sal xxx
Posted in blogs, charity, family fund, friendship, information, photos, t-shirts, travelling, Trojan, trojans corner by Sally's World | 0 comments
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