Sally's World

Seeing as it's after three o'clock in the morning and everyone else in the house is sound asleep. It seems like a good time to tackle the issue's surrounding insomnia. I have no hope of getting to sleep next to Dave's freight train like snoring anyhow. It wouldn't be so bad if there was something decent on the telly at this time of the morning...there never is, although I am now somewhat of an expert on African and Indian wild life.

Insomnia is something that I have suffered with for so long now, that I don't even think anything of it anymore. And this is a problem I share with several mums and dads I know. It seems to frequently go hand in hand with having special needs kids.

I know exactly why it began; Aaron had sleep disturbance from day one, he never slept more than 2 hours at a time no matter what, so I had to get used to having short bursts of sleep whenever he did. Of course the other children came along and it was no longer possible to do that, and Dave was working full time, so I never expected him to do the waking nights (besides it would have taken a small explosion to wake Dave once asleep) so I just got used to having less sleep.

Although this may be a major factor in my extreme clumsiness of course!I was always, stumbling out of bed, stubbing my toe, tripping down the stairs, and the kids learnt some rather choice words too.

I guess my body just trained itself to adjust, I got into a routine of four hours sleep and that was that. Of course when Aaron became oxygen dependant, he needed someone with him 24 hours a day. He needed suction, percussion physio, and of course he was tube fed, so it was an every minute job. A family support worker we had recently met did come and see us, and was clearly shocked at how shattered I looked ('you look shattered' I believe actually translates to 'good god woman you look rough')and so she arranged for a nurse to come and sit with Aaron three nights a week for six hours at a time.

So that's when I slept...from midnight to six am on Mondays, Wednesdays and Fridays. I was up every minute of every other day. I did doze of a couple of times, once while I was actually standing up doing the ironing would you believe and another time while I was in the middle of changing a nappy (just a wet one luckily). But I got used to it, and I valued those precious hours in bed.

So I guess my insomnia is self inflicted in some ways, and I now find it impossible to sleep normal hours. It's not my brain or my body's fault, I've deprived it of sleep for so long, it's getting it's own back now.

Besides, you don't really want to be in the same room as me if I've had more than four hours sleep, I'm a nightmare, I bounce off the walls and run around like a Tasmanian devil on acid. Dave and the kids joke about not sitting still for to long in case they get dusted, polished, painted or tidied.

But on the other hand, I don't think I'd get everything done if I had to take four hours out of my schedule. I need another three hours in the day as it is! Twenty hour days seem extreme, but I think my life's pretty extreme. There are too many things I want to achieve to spend too much time sleeping I suppose. of course, the odd lay in would be good.

Night night, sleep tight!

Sal x

For the first time ever, I have been accused of discriminating...

Oh yes, the man who was trying to book our new phone line accused me of discriminating against 'able bodied people' when I explained to him that we could not be without our own number, and certainly not without a land line for a month due to Deion currently waiting for several hospital appointments, and the fact that we are waiting for about ten sets of result e.t.c

He told me I should not expect special treatment.

I did explain to him about the Disability discrimination Act and how companies have to make reasonable adjustments for those with disabilities, but to be honest, my heart wasn't in it, I'm so sick of it, all I wanted was to not be without a phone for any length of time so we don't miss an appointment and go back to the end of the queue. If it was just me, it wouldn't matter.

Of course, Mr sensitive on the other end sarcastically said 'I can't believe you don't have a mobile'

'I do arse wipe,' I said nicely, 'but that doesn't help much, when not all hospital departments won't actually ring them, they need a land line.'

Even after speaking to his manager, and her supervisor, I still don't know how quick it will be, I guess I need to spend the day phoning all the hospital departments, physios' e.t.c.and giving them a land line of someone, then, that person can get me on the mobile.....oh well...such is life, well, my life lol!

What I wonder is, if an elderly person needs a new phone line, a disabled person living alone....is there no priority service? Its a really bad system, I shall write a letter to head office when I get a minute.

Whether or not the parents were involved, one thing is for sure, this child and family did not get the support they needed. Its yet another in a long line of cases where a child slips through the net and loses their Innocent young life needlessly.

"The parents of an eight-year-old girl found hanged in her bedroom have been arrested in connection with her death.
Simon and Susan Moody were interviewed under caution immediately after finding Charlotte Avenall's body at their home in Mansfield last month.
The young girl, who had severe learning disabilities, was discovered hanged in her bedroom on September 12.
Mr Moody, 32, and his 24-year-old wife Susan have been arrested in connection with her death.
Following her death, Nottinghamshire County Council's social services department said it would be reviewing the care and support it offered Charlotte and her family.
She was known to social services from birth and attended Birklands Primary School in nearby Warsop."

http://news.sky.com/skynews/Home/UK-News/Charlotte-Avenall-Hanged-In-Mansfield-Nottinghamshire-Parents-Arrested/Article/200910115397324?lpos=UK_News_Third_UK_News_Article_Teaser_Region__2&lid=ARTICLE_15397324_Charlotte_Avenall_Hanged_In_Mansfield_Nottinghamshire%3A_Parents_Arrested

We had to go back to the school outfitters for one more thing today, and I think I did something silly...but for the right reason (I think!!!) When I was paying, the proprietor said that he was going to give me a discount for Deion.... now, I know what your thinking, "keep your mouth shut, take the discount..." but not me, before I knew it my mouth had overridden my brain (AGAIN!!!) and said 'WHY?'

The guy probably thought he was being nice, but it smacked of pity, no-one else got money off, does a wheelchair entitle you to discount in any other store....ermmm...no!

In my defense, if I hadn't asked, Deion would have. Its hards treating him the same as everyone else is it...big sigh!

Deion has come up with a new slogan, he's very proud of himself, he's been wearing 'Wheelchair Demon' and 'Wicked on Wheels' for a while, and he asked me if he could have a 'skills on Wheels' one.

So here it is, what do you think? This is the first time we've used the gold and silver lettering too.

Lots of people have seen it and ordered it, I love the feedback we get from kids wearing these t-shirts, they are really making a statement, its fabulous.

I was reflecting earlier at the difference of Deion going on to secondary school as opposed to Jordan and Robyn going.

When it was their turn, I stressed about making sure we had all the right uniform and stationary,and I worried about the size of the school and them getting lost because they were used to such a small primary school, but it struck me how different it was this time, how different the things I am scared of are!

While we were in the school outfitters and we were trying on Blazers, we had to consider different things, after all, Deion's going to be sitting in a wheelchair, the blazer has to be comfy for that, not too stiff, a bit longer so he can sit on it so it doesn't bunch up around him. We tried on 12 before we found a suitable one. It took me about a year to explain to the salesman that the trousers had to be slightly longer, as he sits down all day, therefore come up short, (he hates his socks showing).

The bag needs to be bigger and sit right on the wheelchair handles, he has to fit so much stuff in, his shoes need to be easy to take off and on so that his toileting care wont take longer than necessary.

I'll have to make a big pad delivery out of school hours so that he has all he needs and his school friends don't see and tease about 'nappies.'

I need to pick up the months menu to make sure he's eating what is manageable for him.

Of course, Deion wont have the option of taking the shortest route to each class as he has to go the accessible way, or via the elevator. We have to pick up his lift key

We have met the 4 people who will be responsible for all of Deion's personal care and toileting needs. We have met his one to one classroom assistant

The school have ordered the height adjustable tables for his wheelchair to sit under, re arranged every class so Deion can manoeuvre, ordered the hoists, changing beds, cabinets e.t.c

We even have the whole school to ourselves the day before everyone else starts so Deion and all the workers involved can get used to each other.

Then theres Jordan and Robyn's preparation

We walked into the school outfitters, said 'we'll have that, that, that and two of them and left!

I'm filling in this form, I urge everyone with a story to tell to do the same, raise awareness and end some of the crap our kids have to deal with!!!


Every Disabled Child Matters (EDCM) is a three year campaign to get rights and justice for disabled children and their families. We want to raise awareness about:


1) the fact that lots of families with disabled children are still not getting the right support they need to lead ordinary lives
2) some of the specific issues facing families at the moment
3) how those issues can be overcome if the right support is available

Having examples of all these things in the media – with real stories from real families – is a very powerful way to put pressure on government to make change happen and improve the situation for disabled children and their families.


www.edcm.org.uk/edcm_media_form.doc

I’ve noticed that there is a trend in the e-mails I’m receiving from some of the mums who are following the blogs. That is that many seem to be angry that it is their child who was born with a disability. While I totally understand it, and know it is a perfectly natural reaction to finding out your child has special needs, you cannot allow it to affect your lives.

You have been given the most amazing opportunity. You get to take care of a most precious child, an extra special child. You need to feel blessed and grateful for that. Whilst it is a very different life than many parents and families will experience, it is incredibly rewarding and fulfilling as long as you embrace it wholeheartedly.

So by all means get angry, but direct it at the right people (which definitely is not yourself as some mums feel). My anger is not at having children with disabilities, it is at the system that makes getting my kids what they need so hard. So that anger can be productive, it is the fight and determination that means you will achieve what you need to for yourself and your child.

You cannot let the anger get to you, because it will affect the life you have with your child. If anger is the focus, fun and laughter won’t be, not all the time. And what matters, especially to kids, is fun and laughter. Live life, make it fun, make it count and make sure there are no regrets and ‘should haves’ when you look back.

Of course, you may not see it that same way as I do, not everyone has my views and ways of coping, and I respect that. So please, please feel free to comment and give me your opinion. Also, if I can give you any advice on the practical issues surrounding disability, then you just need to ask, if I can’t help, I bet I know someone who can.

So, word for the day…Gratitude!

Sal xx

Why wild dolphins in the Bahamas? I know most of you have heard about swimming with dolphins in captivity in special centres, and I hear its incredible. We wanted a different experience though. Before we booked our trip and while we fund raised, I did a lot of reading, (no change there then), I read about the dolphins themselves, and I read about peoples experiences, and most importantly I read about how those people were afterwards.

Now one thing was obvious, no-one came away from their experiences with the dolphins without having had a life altering experience. But one thing became obvious the more I looked into it, and that was that the beneficial effects of swimming with wild dolphins seemed to outlast those of people who swam with captive dolphins.

There's lots of speculation as to why, some reports suggested that as wild dolphins are happier, they can give more. Others simply that the whole experience is freer, and therefore more therapeutic. But just as no one knows quite why dolphins are so beneficial, no one really knows the answers to that question either.

So we went off to look around on the Internet with Aaron on my lap, and he clicked off onto a group called Wild quest. We delved a little deeper and it seemed just what we were looking for.

Not only was this a group that took you out to swim with wild dolphins, it was actually a healing family week. Perfect. So off we went. I'm a bit of a water baby, so I couldn't wait to get there. Dave was a little apprehensive as he'd never swam in the sea before. The kids have no fear of anything, so they just wanted to dive right in and have an adventure.

When we got there, the size of the island was a surprise, it was tiny, and quite underdeveloped, and probably the most natural beautiful place I have ever seen. And the wild quest crew were fantastic with all the kids. They looked straight past Aaron and Deion's physical limitations and saw them for who they are as people. Total acceptance, as many of you know, is very rare indeed.

Although we initially thought we were going for Aaron, we all benefited. Deion, as you all now know has cerebral palsy, and we were not quite prepared for the effect the week would have on him either. All of our faces the first time we caught a glimpse of those magical dolphins gliding through the water must have been a picture. And the noises they make, I can't quite put it into words, but it's a sound that vibrates right through you and makes you feel totally peaceful. Like I said, words are inadequate here.

It wasn't all smooth sailing (pardon the pun). As I said, Dave isn't the best swimmer, I often tease him that he swims like a brick. He has a whole big excuse about his muscle being more dense than ours, closer to the surface, subcutaneous muscle he says, makes you heavier in the water. Whatever Dave!!! The day we saw a tiny baby tiger shark in the water though, his subcutaneous muscle didn't kick in and he practically ran on water to get back to the boat. He shot past me quicker than I've ever seen anyone swim! Of course it would have been better if he hadn't left an eight year old Jordan in the water to fend for himself.

But before you ring social services, don't worry, there were plenty of other people in the water, and Jordan got back to the boat safely. We'll never let Dave live it down though.

Anyway, when we got back; friends, family, teachers and doctors couldn't quite believe the change in Aaron. He was more alert, his eyes were wide open and he had more energy than we knew what to do with. So we broke our necks and got back there every year, every time we touch down in Bimini it feels like coming home, wildquest crew have become family and it became our way of keeping Aaron strong. A sort of secret weapon, if he became week or ill, we booked a flight.

Thats why we scattered Aaron's ashes there, it was like taking him home, now we think of him flying through the waves with his dolphin friends. I know that's where I'd want to be.

Take care, see you soon. xxx

Sometimes one of my posts may come across harsh, judgemental even, so if that bothers you, I’d click off now….

Katie Price a.k.a. Jordan…now, whilst she has never been my cup of tea, not someone I particularly admire, she’s never really bothered me as such. She’s basically a foul mouthed, heavy drinking, glamour model with a lot of breast implants, but she has never really pretended to be anything else, and is easy enough to avoid (which I choose to do mostly). And okay so her and her husband Peter Andre have a fly on the wall, inside the home show, that is, well, quite frankly ridiculous, as they seem to do nothing but scream shout and swear at each other during thier...oooh, five minute marriage!…hardly a match made in heaven…but again, people are obviously interested in it…so whatever.

She has three kids, her eldest son she had with footballer Dwight York, his names Harvey, he’s a cutie pie, and he’s disabled. She has 2 other children with Peter Andre.

But what DID bother me, which made me so mad that I could spit…was the fact that her and her husband split up recently (not that I give a rats arse about that) but she jetted off to a secret location somewhere to get away…fine, but she took the kids…but not ALL the kids, she took her two able bodied children and left her disabled son behind!!! GGGGRRRR!!!

I wanted to throw something through the TV when I heard that, she should be ashamed of herself. How can you do that to your kids….she’s a mum, she doesn’t get to chose which ones she prefers… how is that supposed to make him feel, being discriminated against by your own mother….what a bitch!

I know some of you are going to say, oh well maybe she was going somewhere unsuitable, maybe she didn’t want to upset his routine…then she should have chosen to either go somewhere suitable, or stay put….after all, moneys no object….you just know this is going to be one of those break ups where the kids suffer (unless its all a publicity stunt...which is very likely), they are not going to be able to put their own selfish needs on hold for the sake of the kids….

Then aparently, she phoned her husband and blasted him for leaving Harvey at home with her mum so he could jet off also...so it's okay for her to do it....the whole situation is quite frankly ridiculous...and who is stuck in the middle....

She doesn’t deserve to be a mum in my eyes!!!

Aaron passed away three years ago now…3 years, two months and eight days to be exact.

So imagine how I felt when I got a lovely big letter through the post, in Aaron’s name, with leaflets and brochures about the adult learning centres that were available to us, as Aaron would be turning eighteen this year and leaving full time, special needs education.

Now, I expect the odd letter from the dentist/opticians/brochures we prescribed to. ..But call me naive, didn’t really expect them from any kind of government run department.

When Aaron should have turned sixteen I got a letter talking about changes in benefits, and other educational provision, and I rang them up and gave them a bollocking that would have made a sailor blush. So it seems strange they have made the same mistake again.

When Aaron passed away, I rang the benefit people, they had no trouble stopping his benefits, I had an adapted vehicle for him at the time part funded by a special scheme, and within a week of his passing they turned up to collect it, with no regard for the fact that I needed it for Deion too, child benefit, yep, all stopped. And worse thing of all, Aaron’s one to one key worker at school, a lovely girl called Mel, who had (understandably) gotten attached to Aaron, was told the day after he passed away that she was out of a job…with complete disregard for the fact that the poor girl was grieving also.

So they don’t seem to have a problem stopping anything that costs them money, no problem making sure that there is no unnecessary outlay…god no, I had visions of them rubbing their hands together at all the money they were going to save now that Aaron was no longer on their list!!!! Bastards!!!!

So now, am I totally stupid in thinking that somewhere in the governments special needs education system, the very system that deals with education of all kids with special needs, that there is information on Aaron, information with regards to his passing???

I’m incensed, angry beyond words…I know its just a letter, I know these people are more incompetent than a bunch of chimps at a tea party…couldn’t organise a piss up in a brewery…yep, I know all this…but the truth is these letters are heartbreaking, they put you back months.

I KNOW you dozy, lazy, incompetent arse holes what Aaron SHOULD be doing…you complete utter useless shits…I KNOW about all the thing I SHOULD be having to arrange for my soon to be eighteen year old son….so thank you so much for the reminder, how kind of you, and how lucky you are that guns are illegal in this country, because if I owned one I just might be tempted to use you all as target practice!!!

Is there a government workers manifesto we know nothing of, something along the lines of
1) clients must be thoroughly ignored at all times
2) when it is impossible to ignore them, they must be treated with complete contempt
3) complete disregard for feelings must be adhered to at all times
4) you must never ever call back when you say you will
5) if you see an opportunity to upset/depress/stress/anger a client, it must be taken, at all times.

How many grieving wives/mothers/sons/daughters have to put up with this????

There's been some coverage recently about how poorly carers are paid and treated, and its just getting worse...can anyone explain to me, how one of the most important jobs gets the least amount of respect???

This ridiculously small amount of money is supposed to make up for the fact that carers can't go out and earn a full time wage...but where on earth do the government think they will be without carers...they'd be forking out a damn site more money for full time nursing homes, nursing care and residential schools and homes.

Parents who want to keep their children home with them are punished, is it any wonder that single parents find it almost impossible to cope!

The recent increase in the minimum wage has left some carers several hundred pounds out of pocket, Money Box has learnt.

Any carer who works for 16 hours a week at the new minimum wage rate of £5.95 now earns £95.00.

This is above the £95.00 earnings threshold for Carer's Allowance and means they are no longer entitled to the weekly payment of £53.10.

And this revelation comes in the week the government launched a £33 million initiative to help carers.

To read more go to...
http://news.bbc.co.uk/1/hi/programmes/moneybox/6390409.stm

Its nothing short of insulting...it devalues and demoralises! Something needs to be done NOW!



Please write to your local MP and demand that they take action.

Seeing as we are blogging against disablism today, I will share something that makes me laugh a lot…although you may not agree.

Now I am sick of people looking at me like I am the cruellest mother on the planet if I tell Deion off. Deion may be a wheelchair user, but my goodness, he has a cheeky streak equal to none…and as I believe in equality, I believe I should treat him just as badly as I treat my other children….I’m JOKING!! Of course I’m joking, but if Deion does something wrong, he’s going to get told off just like Jordan or Robyn would. If we are in a shop and he asks for something, I get looked at like I’m evil if I say ‘no’…if I have to tell hi to hurry up, its even worse… but for goodness sake, he’s in a turbo charged wheelchair, why should he need to dawdle, and if I tell him off for running into me or not looking where he’s going, people have actually threatened to call social services…

Aaron too, no special treatment form me I’m afraid…telling him off got me even worse looks, because he looked more limited and couldn’t talk…but he still bloody well knew when he was being naughty.

One day he saw the van but turned the other way (to run away as it were) cos he was sulking with me. I raised my voice and told him to come back, but he ignored me, so I ran after him, stood in front of him and told him to go to the car and stop being so stroppy, he threw me a dirty look and reluctantly turned towards the car.

Two ladies happened to be walking past and muttered what a cruel woman I was for telling the ‘poor little thing’ off….okay…’poor little thing!’ don’t make me laugh. I had to respond, because it is this kind of ignorance, this false sympathy that drives us mad. So I yelled “oh, so just because he’s in a wheelchair, you don’t think he knows how to be naughty?”

Of course, Aaron was laughing by now…he loved a good row…

I went on to explain how ignorant her attitude was, and how she should not presume that disability equals stupidity, how dare she suggest my child does not have the intelligence to be naughty….of course he did, he got up to mischief all the time…ask some of his friends and teachers!!!

It’s as important for Deion to grow up, not expecting to get his own way, as it is all children. What kind of mum would I be if I spoilt him rotten. It’s not that I like him being in a wheelchair, but the easy thing would be to give him is won way, and I’m not in it for the easy life, I am raising three children into strong, independent self sufficient adults.
Deion is keen not to be treated differently form everyone else, if someone goes to give in because of the wheelchair he’ll tell them straight…”it’s okay, I’m not going to play the disability card!” he is perfectly comfortable with his disability, and its important that everyone else is too…that’s how we stop the negative attitude…

Acceptance, embracing, education!!!!

One things for sure, the rule book goes out of the window when you have a child with special needs.

It amazes me how different things are. When Jordan and Robyn went to secondary school it was easy really, so we traipsed round all the schools in our catchment area, weighed up all the pros and cons, talked to teachers, pupils, analysed the exam results… essentially it was pretty simple, and they’ve been very happy with the choices we all made…

So obviously with Deion, we got embroiled in a big fight about which school, because somehow the education department thought that having special needs meant you didn’t have as much right to choose, but we got our own way in the end…then there was the fight to get suitable toileting facilities, anyone would think I was asking for a space rocket, not simply suitable toileting facilities…I’d probably have more have more luck and less fuss getting my hands on a bloody space rocket….note to self, ring NASA!!!

Next came transport…think we’re almost there on that point…the school are being great and we are ironing out any other issues…relatively small regarding what happens in a fire drill, desk heights, classroom organisation, low coat hooks, games and PE…..all surmountable issues…

But here comes the bit I don’t get, the thing I fear we’ll never alter, and that’s ignorance. Now, when JJ and Robyn went off to secondary school, not a single person ever asked me if they would be taking exams when they left school…the question of them leaving with a decent education went without saying…it is expected no???

So explain to me why someone would ask me (with a scoff of derision no less) if I thought Deion would really get any GCSE’s.

I get Deion is different... $h!t, Deion gets he’s different…but since when did different mean stupid????

As parents, when your child has a disability, yes, you adjust your goals and expectations if you like…it’s not the first steps you crave, it’s a new electric wheelchair so that he can drive himself. Okay, its not football, but wheelchair basketball, we’ve been told the likelihood is that Deion wont be able to have children of his own…so we might look forward to the day he fosters or adopts a child, he may chose not to have children.

But we are blessed, and Deion has merely physical limitations, not academic ones…hence the fact he can attend a mainstream school, hence the fact he is so bright its scary, has a sarcastic/cheeky/okay, if I’m honest an evil streak to rival Dennis the Menace….why would we think he wont be taking exams…don’t all kids in mainstream school take exams…is it not what is expected????

So to the woman…who I am also sending this post to also, who works with children in special education, who is supposed to be helping and supporting us…quite frankly up yours!!! Is your child taking exams…what’s that?...no kids, oh, could have guessed that…you probably couldn’t raise a cat! I’m sure when Deion graduates from University…you’ll still be sat behind that desk, not having a clue about real life…

Deion knows he can do whatever he wants in life…the people that know and love him spend a lot of time and energy making sure he knows he has no limitations in life…so when someone, who should quite frankly know better, comes along and has the ability to undo all that work in one sentence…it makes me so mad I could spit…

Needless to say, we wont be having anything to do with this person in future…after all, I would like to see Deion graduate from college, instead of serving a prison sentence for murder!!!

And just for the record, that’s not a threat, I’m merely venting my anger and frustration at your incompetence, ignorance and stupidity!

Many people are e-mailing and asking me about Aarons medical conditions. Especially my newer followers. I have tried to be informative here about the conditions themselves.

What is Smith-Magenis syndrome? (Aaron was born with this.)

Smith-Magenis syndrome is a developmental disorder that affects many parts of the body. The major features are mental retardation, distinctive facial features, sleep disturbances, and behavioural problems.

Disrupted sleep patterns are characteristic of Smith-Magenis syndrome, typically beginning early in life. Affected people have trouble falling asleep and awaken several times each night.

People with Smith-Magenis syndrome have endearing, engaging personalities, but also have behavioural problems. These include frequent temper tantrums and outbursts, aggression, anxiety, impulsiveness, and difficulty paying attention. Self-injury, including biting, hitting, head banging, and skin picking, is very common. Repetitive self-hugging is a behavioural trait that may be unique to Smith-Magenis syndrome.

Other signs and symptoms of Smith-Magenis syndrome include short stature, abnormal curvature of the spine (scoliosis), reduced sensitivity to pain and temperature, and a hoarse voice. Some people with this disorder have ear abnormalities that lead to hearing loss. Affected individuals may have eye abnormalities that cause nearsightedness (myopia) and other problems with vision. Heart and kidney defects also have been reported in people with Smith-Magenis syndrome, though they are less common.

To read more go to...
http://www.medic8.com/genetics/smith-magenis-syndrome.htm

What is Mitochondrial Myopathy? (Aaron was diagnosed with this when he was seven.)

Mitochondrial myopathies have many different faces. There are dozens of varieties of mitochondrial diseases, with a complex array of symptoms. Some symptoms are mild, while others are life-threatening. The mitochondrail cells are what give our muscles energy, when they don't work, the body over produces lactic acid, which along with the lack of energy, casues the muscles wither and die.

Aaron's strand of the disease caused muscle weakness, muscle cramping, fatigue, lack of endurance and poor balance, a wheel chair and then progressed so he couldn't swallow, chew and eventually breathing became hard and he was oxygen dependent. Each case is unique.

To read more go to....
http://www.mda.org/Publications/mitochondrial_myopathies.html

For anyone who is interested, here is a great article on CP, Trojan...being the angel that he is, and always on the lookout for stuff like this for me...sent it over...it lays out the facts far better than I ever could.

http://www.bbc.co.uk/health/conditions/cerebralpalsy1.shtml

What is it?
There are several different types of cerebral palsy. While some people are severely affected, others have only minor disruption, depending on which parts of the brain have been damaged.

The main types of cerebral palsy are:

Spastic cerebral palsy - some of the muscles in the body are tight, stiff and weak, making control of movement difficult
Athetoid (dyskinetic) cerebral palsy - control of muscles is disrupted by spontaneous and unwanted movements. Control of posture is also disrupted
Ataxic cerebral palsy - problems include difficulty with balance, shaky movements of hands or feet, and difficulty with speech
Mixed cerebral palsy - a combination of two or more of the above

Deion has mixed cerebral palsy as such a large part of his brain was damaged.

What are the symptoms?
The symptoms of CP may take some months to become apparent and depend on the type.

There may be abnormal tone (stiffness or floppiness) of the limbs and odd postures.

In spastic cerebral palsy (70 per cent of cases), the limbs become stiff and may be drawn in. In athetoid cerebral palsy (10 per cent of cases), the child develops involuntary irregular writhing movements.

There may be incoordination of the muscles of the mouth, causing feeding problems such as slow feeding, gagging and vomiting, delayed motor milestones, such as crawling and walking, weakness or paralysis of the limbs, an abnormal gait and slowness in developing speech and social skills.

As many as one in three children and adolescents with cerebral palsy also has epilepsy.

Other common problems include:

Difficulty with walking, writing, eating, talking, dressing
Problems with balance and coordination
Difficulty controlling and maintaining posture (they may need help to sit upright)
Visual difficulties
Hearing problems

A common misconception is that people with cerebral palsy inevitably have learning difficulties. This may have arisen because people with the condition can have problems controlling their facial movements and speech, and it can be difficult to understand them at first. Some people with cerebral palsy do indeed have moderate or even severe learning difficulties, but just as in the rest of the population, there's a range of intelligence.

What causes it?
It's easiest to think of cerebral palsy as a condition in which part of the brain hasn't developed properly. This might be because of a variery of events occurring before, during or after birth.

Most people think of cerebral palsy as a condition caused by problems during labour and birth. However, it's now generally accepted that complications at this time are an important factor in a only minority of cases, around one in ten.

The most common cause of cerebral palsy is something that damages the brain while the baby is growing in the womb. These antenatal factors can be found in 80 per cent of those affected and include genetic problems, malformations of the brain and maternal infection (rubella, toxoplasmosis).

Better maternity care has meant fewer babies are born with cerebral palsy due to birth trauma, but this has been offset by the improved survival of premature and low birthweight babies, who may be up to 50 times more at risk of cerebral palsy.

Infections when a baby is young (especially encephalitis or meningitis) can also lead to cerebral palsy.

In a number of cases, it's difficult to pin down the exact cause with any certainty.

What's the treatment?
There's no cure for cerebral palsy. However, there are plenty of treatments and therapies that can reduce the impact of the condition by easing symptoms such as spasticity, improving communication skills and finding other ways to do things.

Physiotherapy, occupational therapy and speech therapy can all play an important part. Find out more from Scope, a charity that focuses on cerebral palsy.

Children with cerebral palsy do best when they get special help from an early age. Because the brain changes a lot during the first few years of life, it can be difficult to assess the extent of cerebral palsy at first, but most experts suggest babies should be first assessed at about nine to 12 months.

Many children with cerebral palsy benefit from an approach known as conductive education, which helps them to overcome movement problems and gain some control through special education and rehabilitation. Adults can get a lot from it, too.

Speech and language therapy helps with speech development and also with eating, drinking, and swallowing.

Surgery is sometimes needed to correct any deformities that develop as a result of abnormal muscle development or function. Like Deion many children have their hamstrings lengthened to counteract the effects of the CP.

Medication can reduce muscle hyperactivity and spasticity, but physiotherapy is the bedrock of cerebral palsy management and can helps with posture and movement. It also tries to prevent progression of disability.

Occupational therapy helps children overcome difficulties performing everyday tasks, encouraging them to lead independent lives.

With help, most people with cerebral palsy are able to live much the same sort of lives as everyone else. They may have to work a bit harder to overcome practical problems, but most things are possible.

It is great that celebs are speaking out and raising awareness about disability...it is probably true that people seem to be able to relate more to high profile figures than members of their own community, so by talking about disability and how it affects families, is only going to help people understand and show compassion.

CEREBRAL PALSY FACTS

It is the most common form of disability in children

Around one in every 400 babies in Britain are born with it each year

The incidence rate increases to one in 20 for babies with a birth weight under 1500g

http://news.bbc.co.uk/1/hi/health/7988219.stm



High profile names can help raise awareness of a disease or condition, and bring it under the spotlight.

This video series talks to those in the public eye about their personal reasons for speaking out.

Football star Phil Neville speaks out about his daughter, Isabella's, cerebral palsy. He talks about the challenges and rewards of family life.

He shares his joy when she took her first steps, despite the doctor's odds.

Five years ago, Isabella was born ten weeks prematurely, weighing 3lb 3oz (1kg 445g). She spent her first few weeks of life fighting for life in a special care baby unit.

Isabella survived, but at 18 months she was diagnosed with cerebral palsy - a disability caused by damage to the brain before or during birth.

One of the reasons this is a great example is because it highlights the different levels of cerebral palsy quite well, here is a child with CP that can walk, obviously Deion has CP and is a wheelchair user, so even though the level of physical limitation may be different, what a family has to go through is largely similar.

The more read the blog is, the more e-mails I get asking me about the T-shirts, and most of the comments have been fantastic, however, there were two people who asked me if by putting slogans on the shirts, it is setting our kids apart. Sorry to burst your bubble, but as much as it shouldn't be the case, it's the wheelchair that sets them apart. The slogans are just a great way of making people realise, that you don't get to stare and be derogatory, just because our kids are different.

If most kids and adults were stared at or teased, they would be able to have their say, not everyone can do that. And as a parent or carer, it would be easy to get involved in fights on a daily basis about this. So instead, the slogans get the message across without having to get into a confrontation. Many kids are gaining confidence from wearing them. 100% of the time, they stop people staring, or actually make them realise they were staring in the first place.

So far the comments from kids and parents wearing the shirts have been amazing. They are raising awareness, making people realise that 'it's rude to stare', that even if a child can't tell you, they notice if you are being derogatory. And remember, they aren't just for kids, one of our best sellers is actually a bright pink hoodie saying 'wheelchair babe', and the majority of them are sold to elderly ladies in wheelchairs...fantastic. Of course a few elderly gentlemen have caught on and sales of 'chicks dig the chair' in adult sizes are on the rise. Hmmm!

A couple of people also asked if they have special fastenings for easy fitting. All I can say is, that we don't dress differently just because we know we are going to be sitting down all day, so we don't provide those for kids just because they are going to be sitting own all day. These types of clothes, would set them apart in a less positive way. What we want are ordinary, affordable clothes in ordinary colours, just with great slogans to reflect their personalities. I know that specialist clothing may be more necessary as people get older, adn its personal choice, but its not something my son would want. He wants trendy jeans just like his friends.

My son's favourite slogan is 'my other wheelchairs a porsche', not only does it make people smile, but it makes them realise that he isn't insecure about his disability. He has no choice but to embrace it, and he thinks everyone else should too.

I hope this answers your questions, if not then let me know.

Sal x