wibbly wobbly  

Thursday, 30 April 2009

Hi Everyone, thank you for all your get well messages yesterday, goodness, I felt bad, I’m trying to get back on top of things today…I’m so rarely ill, it shocks the life out of everyone, especially me…its a way of reminding me I’m not actually as invincible as I think!!!

So I’ve had a ton of blood tests, the phlebotomist threw the needle, javelin like across the room (well it felt like it) and I forgot that people who work in hospitals have absolutely zero sense of humour…cos when I asked him if he’d ever thought of throwing javelin at the next Olympics, he looked at me like I was mad! Oh well!

So he actually moaned at me that he couldn’t get a vein as they were all collapsed…I apologised profusely of course, even though I hardly chose to be so totally dehydrated that my body was trying to hang on to any bit of fluid it could…I am now lovely and bruised, six puncture wounds and a lovely black, purple and green bruise along my arm…very attractive! I shall need to wear long sleeves, whatever the weather so people don’t think I am a drug addict!

I feel a tad wobbly today (or wibbly wobbly as Deion says), my head is reduced to a dull thud…the house of course looks like a tornado has ripped through it, and I’m pretty certain no-one checked that Jordan didn’t just shove on the same clothes (yep, including socks) that he had on yesterday…and I can’t be bothered to care about any of it, which shows I must be feeling ill, cos I’m usually pretty OCD about this sort of thing. I’m going to go back to bed for a couple of hours…

I’ll be back in a while to catch up with some blogs.

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Just An Observation  

Wednesday, 29 April 2009

Wow, I know I'm late for me today...but had 24hr sickness bug from hell....I know I always gripe about needing to lose a few pounds....but this is not the way to do it...feeling a bit wobbly and sorry for myself...maybe thats why todays post not so upbeat..sorry...

I spoke to a friend of mine the other night, her husband has been made redundant and she is worried that they won’t be able to make the mortgage payments and will lose the house. I tried to offer words of comfort, but she said, ‘Sal, unless you’ve been there, you don’t get it.’ And I realised how true that was, when anything happens to us, the world suddenly divides into two halves.

When Aaron passed away, the world suddenly divided, there was mums who had lost sons…and those that hadn’t…all black and white, no in between.

And that is how it is for anyone I think, miscarriages, robbery, rape, losing your home, stress and grief makes us feel separated by the invisible line, and that is what makes it feel so lonely.


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What is the life sentence for murder these days????  

Tuesday, 28 April 2009

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!

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Gone in 60 Seconds!!!  

Monday, 27 April 2009

I went over Trojans yesterday, and we decided to do a video blog…we’ve been following some stuff going on in the media, and of course the Rihanna and Chris Brown debacle…and it got us talking about people in the public eye, shouldn’t they be entitled to have a relationship without it being ripped apart by the media…

Trojan and I had somewhat different views… and to make matters worse, we decided it had to be short, so for some inexplicable reason set ourselves a sixty second time limit…I have absolutely no clue why we thought we could answer the question in 60 seconds, it just seemed like a good idea at the time.

Have a listen…its okay, we don’t come to blows…. well, not during filming!!!

Okay, so we see it differently, but as I said, with any job comes responsibility, if someone were to become a police officer or a teacher, it is accepted that they are going to be influencing children, therefore need to be responsible and set the right example…so in becoming rich an famous in an industry where you know young people will look upon you as a role model…you have a certain responsibility…

What you can’t see in the end shot there is me pulling on my boxing gloves…well, we had to have the debate…which roughly translates to ‘I need to go on and on until Trojan sees it my way!!!’ because, naturally, I couldn't possibly be wrong!!!

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An Attitude of Gratitude  


Fine al Thoughts http://jtfinefamily.blogspot.com/ is a total sweetheart and has given me this award, I am honoured! I love these awards and the questions, they are such a great way of getting to know one another better.

The Rules of Accepting and Sharing this Award:

1.Put the logo on your blog or post.

Sorted!

2. Nominate at least 10 blogs that show an attitude of gratitude.

Dena
http://thoughtsbydena.blogspot.com/has a great attitude, she has had her ups and downs, but has a great attitude, it shines from her blog.

Who says 8 is enough
http://bouffard11.blogspot.com/ this is an amazing blog, the love, family values an faith humble me.

An eagles View
http://aneaglesview.blogspot.com/ cos I love her attitude to love, life and family.

I have to nominate Trojan
http://trojansgallery.blogspot.com/ as I am extremely grateful that he's in my life.

Lisa
http://raihndrops.blogspot.com/ who has so many wonderful things to say.

Gotta be JAM
http://jamblogging.blogspot.com/ she is a lovely woman who has a great attitude.

Cozyflier over at funk squared
http://squarefunk.blogspot.com/ one of all time favourites.

Matters of the heart
http://elainecarter24.blogspot.com/ because this is a love filled blog, her wedding posts recently have made me go all soft and gushy, love her attitude and her heart.

RileyScott...
http://rileyscottslifeblog.blogspot.com/ I love the way he speaks about his wife, such depth of feeling, I love his comments, he may not always agree with me, but his attitude of gratitude makes him one of my favourite bloggers.

Last but certainly not least, the Westover family blog
http://westoverfamily2.blogspot.com/ is one to read, gratitude and love in abundance here!

3. Link to your nominees within your post.

Also sorted, as you can see, I'm getting very clever at this now!!!

4.Comment on their blogs to let them know they've received this award.

I'm on it!

5.Share the love and link to this post and the person who nominated you for the award. Tell us how you've come to have an attitude of gratitude.

Being a mum, being in love, seeing miracles, seeing Aaron fight the odds, and show a sense of determination and strenght that taught many people how to live and love with zest, knowing I have had the privalege of sharing time with the people I love.

When a doctor announces you have less than six months with your child, and seven years later you are in the atlantic swimming with wild dolphins, and have spent seven years having amazing fun filled, love filled adventures...how could I NOT be gratuful????

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Some fairytale????  

Sunday, 26 April 2009

Yep, just like Cinderella...the princess gets angry with prince charming, a screaming match ensues...he then slaps her about a bit...gets arrested...is waiting to face the charges, proposes to the princess...she, of course gushingly says yes, they get married, have babies and live happily ever after!!!

NO???

No, thats not how I remember it either...the rumours flying around about these two having a baby together is quite frankly a little frightening...bringing babies into violent relationships is NOT a good idea...

But all is not lost, there are rumours of them both going to Barbados to meet her parents and possibly anounce the pregnancy...so if Rihannas dad is anything like mine, he'll take him to one side and give him a taste of his own medicine...while not condoning violence, I think its importnat that Chris Brown gets to show off his boxing skills on an actual man...


Oh look kids, heres a lovely picture of mummy just after daddy beat her...he isn't in the photo kids, cos he was arrested, but you can see how happy we are...


Rihanna, who was recently attacked and beaten by Chris Brown recently reunited with her boyfriend at one of Sean Combs’ homes.

Chris Brown, who is facing criminal charges for the alleged attack, reportedly proposed to Rihanna in Florida, and she accepted his proposal.

The report stated that Chris Brown arranged a quick ceremony on Combs’ Star Island estate, where they were secretly married.

“All she’s ever wanted was to be with him forever. Rihanna is looking for the husband-and-two kids deal before she turns 25. She believes in fairytales, and she wants to live hers with Chris. She was totally up front and confessed to him, ‘I can’t live without you,” Contact music quoted an insider as saying.

The couple was later spotted again disembarking a jet in L.A., where Brown will face charges relating to the alleged attack.

The couple’s relationship had already been rocky, and Rihanna was scared Chris might dump her hearing she was possibly pregnant.

“She was scared he would react badly,” says an insider.

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8 meals a day my @r$e  

Saturday, 25 April 2009

A Miss Universe Australia finalist has hit back at claims she is too thin, saying she is happy with her body and eats up to eight meals a day.

Stephanie Naumoska is 5ft 9in tall, weighs seven-and-a-half stone and her gaunt appearance shocked some onlookers at the contest in Sydney.

The 19-year-old model has a reported body mass index of 15 - making her malnourished by World Health Authority standards.

Ms Naumoska was one of 32 girls from more than 7,000 hopefuls to make the final, which promotes "healthy, proportioned, bodies".

Oh for goodness sake, here we go again, another supposedly beautiful woman parading around like a human corpse...if this woman eats 8 meals a day my name is miss piggy!!! this woman has not seen 8 meals THIS YEAR!!!! and they probably consisted of a grape and a strawberry....how many more times are we going to put these stick insects on the TV and have our daughters think this is how they are supposed to look...its irresponsible in the extreme.

This is not healthy, its not beautiful, and this woman is not going to lie a long life if she keeps starving her body of nutrients...

This is anorexia people...don't stick her on stage in a bikini that would fit a one year old with a face full of make-up..get her some food, a psychiatrist to find out why she's abusing herself and HELP HER!!!!

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Smith-Magenis Syndrome/Mitochondrial Myopathy  

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

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Deep and Meaningful  

Friday, 24 April 2009

Time for a couple of deep, meaningful quotes!



To Do Is To Be - Socrates

To Be Is To Do - Plato

Do Be Do Be Do - Sinatra

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Oh Dear!  

Okay, so I was over at ‘who says 8 is enough’ (http://bouffard11.blogspot.com/2009/04/out-of-mouths-of-babes.html) earlier and her interview with her son was fantastic, it inspired me. I’ve been tagged on this one several times…so I got the kids to interview Deion on how he feels about me…(doing the sign of the cross and looking heavenwards as we speak) well, we were already on the subject or Deion embarassing me...so better to get it out of the way!!!

1. What is something mom always says to you?
“You can be anything you want to be” oh, and “do you need to do a poo before we go?”

2. What makes mom happy?
She likes cuddles and when I do well at school, she is very happy when someone wins a lot of money in deal or no deal.

3. What makes mom sad?
If we argue, if people drive like total idiots and if we fart or burp in a restaurant (making stabbing motions in my chest now)

4. How does your mom make you laugh?
By tickling, or pulling silly faces, or when she tells me something silly we saw in a film.

5. What was your mom like as a child?
I think she was very tidy and never answered her mum back, cos she tells us she would never have been able to get away with those things, and she always ate all her vegetables, even if she didn’t like them so she wasn’t ungrateful.

6. How old is your mom?
She’s 40 this year, but doesn’t want a party cos then she won’t be able to lie about her age.

7. How tall is your mom?
Very tall for a girl, but not as tall as dad.

8. What is her favorite thing to do?
She likes going to the park and she reads a lot of books, she writes on the computer, her favorite thing is to go on holiday and swim in the sea.

9. What does your mom do when you're not around?
She drinks tea I think. (???)

10. If your mom becomes famous, what will it be for?
For writing a book and for killing plants. (huh?????)

11. What is your mom really good at?
Cooking, cleaning, shopping, making superhero costumes, and I think driving fast.

12. What is your mom not very good at?
Football, basketball, cricket, baseball, running, jumping, riding a bike, hoola hoop, skipping, rugby, high jump, long jump, skateboarding ice skating, roller blading, she has a bad aim, netball, volley ball, tennis, badminton (I had to shut him up at this point, I was getting depressed)

13. What does your mom do for a job?
She sells t-shirts and helps children go to the dolphins, but I don’t think she gets paid for that, she looks after us all, and she cooks a lot, I think she gets paid by my dad.

14. What is your mom's favorite food?
Chocolate cake (oh yeah!!!)

15. What makes you proud of your mom?
Ermm, she lets my friends come round and gives us lots to eat.

16. if your mom were a cartoon character, who would she be?
Mum would want to be wonder woman but I don’t think so. (thanks Dee)

17. What do you and your mom do together?
We go swimming, watch films, play computer, she takes me to the park and visiting, we have to go to the bank sometimes, and shopping, we go to a lot of appointments and have picnics in the waiting rooms so I don’t get bored or hungry.

18. How are you and your mom the same?
We’re not really, she says I’m mad like dad!

19. How are you and your mom different?
She’s a girl silly, and, like, old! (thanks Dee)

20. How do you know your mom loves you?
She tells me every day, and she didn’t come to school dressed like wonder woman when I asked her not to. She makes me my favorite food.

21. What does your mom like most about your dad?
She beats him at scrabble (okay, this one’s true)

22. Where is your mom's favorite place to go?
Bimini to swim with dolphins.

You may laugh...you think its easy...but its not...I set you a challenge!!! if you're nerves are up to it, ask your child and let us know what they say lol!

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For sale... 11 year old boy, one careful owner....  

Thursday, 23 April 2009

Cute smile, cheeky face, very affectionate, works hard at school...only catch...has BIG mouth and NO volume control....

Yep, its official, any takers, I'm done, Deion has mortally embarrassed me for the last time...

He had a hospital appointment yesterday, ENT...local (unfortunately) packed waiting room (even more unfortunately).

About an hour into our wait, Deion, out of the blue...pipes up..."Mum, did you have a bad dream last night"
"No, Dee, why do you ask?"

Stupid, stupid, stupid me for asking!!!

"Cos I heard you moaning"

You know where this is going don't you???

I am well aware at this point that the whole waiting room and all the staff, receptionist and the man delivering mail is listening intently.

"Shh, Dee, we'll talk later."
"Why?"
"Because I said so."
"Okay, I was just asking, cos I heard you laugh, then you moaned, and I think you accidental hit daddy too, cos he moaned..."

I am DYING at this point!

I am vaguely aware of Deion giving me my own tried and tested advice on how to deal with bad dreams, but I can't listen as I am too busy trying to crawl under my chair...

Note to self...soundproof bedroom...scrap that...separate bedrooms, may as well, cos I can guarantee Dave is NOT coming ANYWHERE near me until the children have all left home!!!

Also, find another doctor...hospital...how easy is it to move out of the area completely???

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Tagged 8 Things  

Wednesday, 22 April 2009

I got tagged by Joanie http://joanies-random-rambling.blogspot.com/2009/04/8-meme.html and wilma! over at http://littletoesandcheerios.blogspot.com/2009/04/8-things.html

so here goes...

8 Things I’m Looking Forward To
Going on holiday
Meeting my new nephew
Salsa
The cheesecake in the fridge
Moving into our new house
Having a decent kitchen
That moment when I pick the kids up form school and their faces light up to see me
The charity taking off

8 Things I Did Yesterday
Changed the beds
Did the housework
Washed and ironed the school uniforms
Cooked the dinner
Realised I spent far too much time cooking and cleaning
Poured myself a glass of wine
Had a soak in the tub
Watched a film

8 Things I Wish I Could Do
Sing (I have a voice that scares small children...and dogs)
Sports...just once I'd like to impress the kids with being sporty instead of clumsy
Sleep more than four hours a night
Beat Deion at Mortal Kombat vs DC
Thump Russell Brand for being the most annoying person on the planet
Communicate with those who have crossed over (yep, like Jonathon Edwards)
Own an island
Have my own dolphin program

8 Shows I Watch
Aaarrghhh I don't watch 8....heres the 4 I try to catch
ER
Greys Anatomy
America's next top model
Smallville


8 People I Tag
Missyhttp://is-it-just-me-missy.blogspot.com/
Trojan (only printable answers please!) http://trojansgallery.blogspot.com/

Jam http://jamblogging.blogspot.com/
Dragon http://blackbeauty28185.blogspot.com/
Kim http://chamomile-tea.blogspot.com/
Lisa http://raihndrops.blogspot.com/
Erin http://erinscamera.blogspot.com/
RileyScott http://rileyscottslifeblog.blogspot.com/

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Cerebral Palsy, What, Why & How?  

Tuesday, 21 April 2009

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.

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Blogging Against Disablism  

Monday, 20 April 2009


Follow this link to find out how to join in Blogging Against Disablism Day
This is so important, Blogging Against Disablism Day is on 1st May...please join in....it is only by standing together and standing up to prejudice that we can really make a difference.

I for one am sick of people looking at my child like he is a lesser human being because of the wheelchair, I'm sick of people presuming he's stupid, and so is he. Isn't it about time we educated people so that kids like Deion don't have to put up with negative attitudes and discrimination, just because they are differently abled...

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Aaron's song  


Today I just feel like posting the words to one of Aaron's favourite songs of all time...it depicts his determination and spirit, we played it at his funeral and it brings tears of joy (and sometimes sadness) to many of his friends.

"I Believe I Can Fly"

I used to think that I could not go on
And life was nothing but an awful song
But now I know the meaning of true love
I'm leaning on the everlasting arms

If I can see it, then I can do it
If I just believe it, there's nothing to it

[1]
I believe I can fly
I believe I can touch the sky
I think about it every night and day
Spread my wings and fly away
I believe I can soar
I see me running through that open door
I believe I can fly
I believe I can fly
I believe I can fly

See I was on the verge of breaking down
Sometimes silence can seem so loud
There are miracles in life I must achieve
But first I know it starts inside of me, oh

If I can see it, then I can do it
If I just believe it, there's nothing to it

[Repeat 1]

Hey, cuz I believe in me, oh

If I can see it, then I can be it
If I just believe it, there's nothing to it

[Repeat 1]

Hey, if I just spread my wings
I can fly
I can fly
I can fly, hey
If I just spread my wings
I can fly
Fly-eye-eye



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Cerebral Palsy In The Spotlight!  

Sunday, 19 April 2009

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.

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Bless You!  

Saturday, 18 April 2009

This is too adorable for words!

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A woman's story  

Giving Up Wine

I was walking down the street when I was accosted by a particularly dirty and shabby-looking homeless woman who asked me for a couple of dollars for dinner.

I took out my wallet, got out ten dollars and asked, 'If I give you this money, will you buy wine with it instead of dinner?'

'No, I had to stop drinking years ago' the homeless woman told me.

'Will you use it to go shopping instead of buying food?' I asked.

'No, I don't waste time shopping,' the homeless woman said. 'I need to spend all my time trying to stay alive.'

'Will you spend this on a beauty salon instead of food?' I asked.

'Are you NUTS!' replied the homeless woman. I haven't had my hair done in 20 years!'

'Well, I said, 'I'm not going to give you the money. Instead, I'm going to take you out for dinner with my husband and me tonight.'

The homeless Woman was shocked. 'Won't your husband be furious with you for doing that? I know I'm dirty, and I probably smell pretty disgusting.

'I said, 'That's okay. It's important for him to see what a woman looks like after she has given up shopping, hair appointments, and wine.'




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SIZE 10 DOES NOT EXIST!  

Friday, 17 April 2009

What is happening with clothing sizes these days???

I am a size 10, I have always been a size 10, which is a bloody miracle seeing as I know for a fact that I am bigger now than before I had the kids…I’m not blind, I have a mirror, I have a tape measure, and while I am not about to share those measurements with you, trust me when I say, they are larger in number now.

I set out to prove my point…so I dug out this pair of jeans that I had in about 1988 (yes, I never throw anything away on the premise if you keep it long enough it will come back into fashion)….and this proved my point…the old size 10 jeans barely got up past my knees, the new size 10 jeans fit like a glove…

Photographic proof…..



I guess it’s a ploy by clothing manufacturers to make us feel better…but sizes should be sizes shouldn’t they???

Or, of course, as my son suggests...I should get a life!!!!!!

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That's Gotta Hurt  

Thursday, 16 April 2009

SEE!!! This is living proof that exercise is BAD....


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FREE POO!  

I apologise for not keeping up with my comments the last couple of days. I took the kids to visit some friends of ours down in the New Forest for a break. We had a fantastic time, the kids loved it, it is pure countryside, and once we were about 2 hours outside of London the kids kept asking me what the smell was…I resisted the
urge to say “that’s cow shit!” and told them it was just fresh country air. We are used to slightly thicker and more ‘mineral’ based air in London!!!

The kids were amazed when we got closer and came across horses, ponies and cows wandering around right next to and even in the road, no fences, no owners, just animals wandering free. We were total tourists, the first cow/horse/sheep/Shetland pony/donkey we saw, I pulled over and the kids jumped out the van to take photos…all the locals were looking at us like we were crazy…of course every day life for them!

And one of our funniest moments was Deion shouting “oh my god, someone’s graffiti’d the sheep!” bless…so used to being in London and anything that doesn’t move quick enough getting tagged or spray painted…I had to explain that’s what the farmers did to know who’s sheep were who’s…but how cute is that???

Deion’s highlight was seeing a sign on a gate saying ‘FREE POO’ I couldn’t stop at take a photo as we were on a country road barely wide enough for a bicycle! But we saw many more, and signs offering free horse manure…again, I had to explain why people used manure! Very funny, I don’t think I’ve laughed so much in ages!

We had the most relaxing couple of days, it was great to see the kids all together, and lovely to have a break. The weather was beautiful. We went down to the harbour and saw all the boats, and wandered around the tiny town with the cobbled streets and tiny shops. It was like going back a couple of decades, no one was rushing, complete strangers stopped to say hello and I’m wondering if I can talk Dave into moving out of London!!!!

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Heavens Special Child...Special T-Shirts For Special Kids  

Wednesday, 15 April 2009

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



We are registered with the Uk Copyright Service.

Copyright © 2006 Sally-Anne Stephenson. All rights reserved.

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Death To Telemarketers!!!  

Tuesday, 14 April 2009

At five to six this morning, my phone rang. I picked it up worried that something was wrong, only to be met with someone asking me if I could have one two or three windows in my house replaced for free, what would I choose? I bit back what I actually wanted to say…which was… 'nothing I’d burn my house to the ground rather than let you anywhere near it now you've woken me up you dozy cow!’

I was pissed off, its school holidays, it was also my one chance this week of getting a lay in. Now the kids were awake too…no hope of getting back to bed.

But instead of yelling at her, I said “look, its six o’clock, go away, and before you even think about ringing back later, I have new windows, I don’t need any replaced.”

Five minutes later, the same woman wanted to know if I needed a conservatory, ‘NO!’

Five minutes later a porch!
‘NO again!’

But this time I asked for her phone number…to which she replied with a shocked “why?”… “
So I can ring you at an ungodly hour of the morning about something useless, irrelevant and that you have no interest in, then I’ll proceed to ring you every ten minutes until you want to scream and rip the phone out of the wall….then you’ll know how these phone calls make me feel.”

Why are there a bunch of companies out there who think we are not intelligent enough to source what we need? If I needed a new kitchen/bathroom/windows/advice on endowment mortgages/loan reductions or accident cover, then I am more than intelligent enough to find a company, get the best deal and go ahead and get it done.

Do they think there are hundreds of people sitting in their homes saying, “crikey, we really need new windows, these are practically falling out…if only a telemarketer would ring.” They sit huddled round the phone anxiously waiting for a call….the phone rings, they snatch it up…no, disappointment, just someone selling kitchens, they have to wait again!!!

Exactly…NO! WE DO NOT!

Considering most of us have enough technology in our homes to communicate with Jupiter if we should so wish, why on earth would we not be able to phone or e-mail a couple of companies and get a quote on what we need.

I get that people need to supplement their income, I get that times are hard, so yes, we now get unproportionately high numbers of cold calling from people with second jobs. And okay, I admire the work ethic. But please people, after eight in the morning, before eight at night, take no for an answer and once someone has said ‘no’ take them off your list and never ever call them again!

Grumpy from less than three hours sleep.

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Missing you!  

Monday, 13 April 2009

This is something I wrote for Aaron In the darkest days after his passing….it really makes me realise how far I have come in three years, so at times when I think I am at stand still, in those times when I think the pain will never ease, this can remind me that I am doing okay, we all are, we are living and laughing and loving. This gives me hope, and I think it may give someone else in a similar situation hope too, so I’m sharing it with you…

"I fight my way out of a groggy sleep. I open my eyes and blink in the darkness of the room. It’s still dark outside, but something must have woken me. I can’t hear a sound, but I have a feeling that something isn’t right. I just can’t quite put my finger on it.

Then, suddenly any remnants of peace are shattered as I realise what it is. My heart plummets in my chest, my breathing quickens, and a physical pain shoots through my body.

Then time goes into slow motion.

I pull back the covers and climb out of bed, I run downstairs and into your bedroom. I know I’m running, but it takes forever, I feel like I’m in a dream, a nightmare, running and getting nowhere.

If only it was a dream Aaron.

After an eternity I reach your bed so I can hold you and cuddle you. If I just see one of your special smiles everything will be okay, once I get one of your extra tight hugs everything will be okay, I look in your bed, and I know then that its not going to be okay, because you’re not there, you’re not there snuggled in your cosy bed where you should be.

You really have gone.

I climb into your bed and curl up in your dolphin quilt; I bury my face in your pillow and breathe in your special smell.

And then I sob, because I don’t know how I can learn to live without you Aaron, you defined me in so many ways and you made me who I am. I don’t know what to do, I want to scream with the unfairness of it all. But I know that won’t help, nothing will help, because nothing can bring you back to me.

I cry until my throat is raw and I feel my heart will break, and that’s where I stay until your daddy and your brothers and sisters gently shake me awake in the morning.

I can see that they’ve been crying too, because they all miss you as much as I do.

We will love you always our darling Aaron,

Mummy xxxx"


Life is very different to this now, I no longer dread sleep because this is what I have to face in the morning, and Aaron’s room isn’t a shrine. I don’t think that’s what he would have wanted. We will never move on, we will never have closure, or any of those other dreadful cliché’s you hear a million times a day after you lose someone. But we have accepted that Aaron is with us in a different way.

The love doesn’t change, it’s stronger than ever.

xxxx

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Lessons From The Easter Bunny  

Sunday, 12 April 2009


Everything
I Need to Know,
I Learned
From the Easter Bunny...

Don't put all your eggs in one basket.


Everyone needs a friend who is all ears.

There's no such thing as too much candy.

All work and no play can make you a basket case.

A cute little tail attracts a lot of attention.

Everyone is entitled to a bad hare day.

Let happy thoughts multiply like rabbits.

Some body parts should be floppy.

Keep your paws off other people's jellybeans.

Good things come in small sugar-coated packages.

The grass is greener in someone else's basket.

An Easter bonnet can cover the wildest hare.
To show your true colors,
You have to come out of your shell.


The best things in life
Are still sweet and gooey

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Happy Easter  

Just want to wish all my Bloggy friends a very Happy Easter. I hope you get to spend some quality family and friends time...

Love to you all. xxxxxx

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HOW?  

Saturday, 11 April 2009

Please tell me you can relate. How come, when my handbag is only about eight inches tall by ten inches long, can it hold so much stuff? It must weight 20 pounds. I was in a shop earlier, opened my bag to pay for a book of stamps, and could I find my purse…nope! I did however find a small remote control car, my daughters reading book, a hairbrush (my daughters also), a selection of scrunchies, a box of colouring pencils and a tin of cat food.

It was getting slightly embarrassing, then…“There it is!” said the hopeful shop keeper…sadly not. “No,” I said showing him the empty purse that is merely my spare…well; you never know when you’ll need a spare purse right?

I had to leave the shop minus the stamps as I had no idea where my purse was…it was only on getting home, opening the freezer to take out something for dinner that I discovered its whereabouts.

Okay, so I get how it happened, my purse was in my hand...I was putting the shopping away…and if it was the first time, fair enough, but it happens on a disturbingly regular basis…not exactly this, I’ve been known to find my purse in the bin, the washing machine and the kids’ toy box also….

Maybe this happens to all women all the time, maybe handbags should be banned, men manage. That’s it, a wallet is it for me from now on…only then, where would I put the small photo album, my phone, my reading book, purse, notepad, pens, hairbrush, lip salve, personal alarm, cork screw, defuzzer, tape measure, tissues…how on earth do men cope without a handbag????

Oh well

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What is a mum? Is this your role in the home?  

Friday, 10 April 2009

Trojan from Trojan's corner sent me this advert (he probably knew I'd have an opinion lol!) apparently its showing on TV at the moment...I haven't seen it as I don't get to see much TV...but it's interesting...its really lovely on one level i.e. 'A mum is someone that saves for a hat, and spends the money on a cricket bat instead.' We've all done that..well, I'm not a hat person..but you get the gist!

But on the other hand...and maybe I'm being over sensitive here, but is it not a tad sexist...mums use persil, mums wash the clothes, mum cleans up, mums are the only ones who look after and comfort the kids...okay so at one point she makes her son wash a shirt...big deal, he wastes so much washing powder, she probably wishes she did it herself anyway...yes persil has been going for 100 years, and it seems that a woman's role hasn't changed in the eyes of society for roughly the same amount of time...

And if mums are as tough (yet gentle) as the adverts suggests, why don't they give their husbands and children a gentle kick up the arse and tell them to get the bloody persil out and wash their own clothes....not a single dad in the advert you note...probably they are all busy off earning the bacon, while these stay at home mums get on with women's work!


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band-aids  

Made me laugh out loud...hope you do to!!!

Flynn staggered home very late after another evening with his drinking buddy, Paddy.. He took off his shoes to avoid waking his wife, Mary. He tiptoed as quietly as he could toward the stairs leading to their upstairs bedroom, but misjudged the bottom step.

As he caught himself by grabbing the banister, his body swung around and he landed heavily on his rump. A whiskey bottle in each back
pocket broke and made the landing especially painful.

Managing not to yell, Flynn sprung up, pulled down his pants, and looked in the hall mirror to see that his butt cheeks were cut and bleeding. He managed to quietly find a full box of Band-Aids and began putting a Band-Aid as best he could on each place he saw blood.

He then hid the now almost empty Band-Aid box and shuffled and stumbled his way to bed.

In the morning, Flynn woke up with searing pain in both his head and butt...and Mary staring at him from across the room.

She said, 'You were drunk again last night weren't you?'

Flynn said, 'Why you say such a mean thing?'

'Well,' Mary said, 'it could be the open front door, it could be the broken glass at the bottom of the stairs, it could be the drops of blood trailing through the house, it could be your bloodshot eyes, but mostly.....it's all those Band-Aids stuck on the hall mirror.

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Lots of Bollocks!!!  

Thursday, 9 April 2009

We are moving soon, so I've been packing/sorting/streamlining like my life depends on it. Yesterday, I sorted though a box of pictures the kids have all drawn for me over the years...it's more of a crate really, cos I keep everything they ever made me...But I came across a picture that made me laugh until I cried, I remember the day Robyn handed it to me so clearly.

She was 6, she came out of school, beaming at me, handing me her farm themed picture...I held it up and made all the right cooing noises, taking a minute to figure it out, it was a green field, and had lots of brown splodges on...with legs and tails I think...it was only when I looked at the bottom to how she labeled it that I burst out laughing...she'd labelled it "lots of bollocks" instead of bullocks.

The teacher explained that while she didn't feel it was suitable for the class display, it was too precious not to keep. it was a hit in the staff room, and amongst the other mums...fantastic...

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Wraparound dresses are the enemy!!!  

Wednesday, 8 April 2009

Wraparound dresses are a bad idea…a worse idea even than hipster jeans with a thong showing…not that I am a thong person; I think there is merely about a three week window when you can get away with a thong…somewhere in your late teens...unless you’re Madonna of course.

So finally in the UK spring has sprung, the sun is shining and it is finally warm enough to allow our milk bottle white legs to be seen by the general public…

So I went into my wardrobe and dug out a dress…gasp…it’s been a while…if only I had thought it through, after all, it is England, and even if its warm, its still going to be breezy…so while I didn’t mind showing off my legs below the knee, I was a little less impressed with the strong gust of wind that took my dress and made it land up around my neck somewhere giving the whole world a view of my comfy cotton knickers…(insert huge blush here)

And lets be honest here, I’m no Marilyn Monroe…but it could have been worse, I could have been in a thong and flashed my arse too…not sure what’s worse, flashing my granny knickers making the world think I’m a frigid frump, or wishing I was sporting a racy thong…whilst while making the world as a whole gasp at my audacity for thinking I looked okay in one, might make them think I was at least not quite over the hill…

Big sigh…another place I can never show my face….mind you would anyone recognise it, after all, my face was perfectly well covered…with my skirt!!!!

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Our Dolphin Experience  

Tuesday, 7 April 2009

Trojan from Trojans Corner has worked his magic again and made this beautiful short video album of our trip to the dolphins...it brings back memories so sweet it brings tears to my eyes.... Thanks Trojan, you are an angel...go to http://www.trojansgallery.blogspot.com/ to see his lovely post on the subject.



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 I read about peoples experiences, and most importantly about how those people were afterwards.

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.

xxx

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Words of Wisdom  

Something to make you smile this morning!
Love is grand!
Divorce is a hundred grand.
***************************
I am in shape.
Round is a shape.
***************************
Time may be a great healer,
but it's a lousy beautician.
***************************
Talk is cheap because supply exceeds demand.
***************************
Even if you are on the right track,
You'll get run over if you just sit there.
***************************
An optimist thinks this is the best possible world.
A pessimist fears this is true.
***************************
There will always be death and taxes;
However, death doesn't get worse every year.
***************************
In just two days, tomorrow will be yesterday.
***************************
Practice safe eating -- always use condiments.
***************************
It's frustrating when you know all the answers,
But nobody bothers to ask you the questions.
***************************
The real art of conversation is not only to say the
right thing at the right time, but also to leave
unsaid the wrong thing at the tempting moment.
***************************
Brain cells come and brain cells go,
But fat cells live forever.
***************************
Age doesn't always bring wisdom.
Sometimes it comes alone.
***************************
Life not only begins at forty,
It also begins to show.
***************************

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Is Time Travel Possible???  

Monday, 6 April 2009

I saw my good friend Trojan yesterday (http://www.trojansgallery.blogspot.com/) and we got into a rather heavy discussion about a very important issue.

Did we spend our time discussing the issues of world peace, famine, war, disease you may ask...NO! While the world is in the grip of this terrible recession, we discussed something on the tip of every ones tongue...yep! we discussed Time Travel!!...of course....

Now I love a good sci fi, I love watching films that make us wonder..but come on...its not really going to happen is it. There is one existence...and we are in it, surely its obvious that for time travel to be even remotely possible, there would have to be millions and gazillions of parallel universes happening simultaneously..nope, I just don't buy it....

Then Trojan came up with this Little gem!!!! time travel to the past is not possible, the past is gone, no going back...good, we agree on that then....but, nope, he thinks time travel to the future is the more probable to be possible...please, Trojan, I Love you dearly, but it is just too unreal...it's like visiting a house that isn't built yet...like the past, it doesn't exist...yes, the world may be heading in a certain direction, and there are many things beyond our control...but we can't nip in for a visit...

Besides, if time travel were possible, don't you think that all the superheroes (because of course, they ARE real, and if anyone could build a time machine it's them)would not have travelled into the future a few times, seen what a mess we'd made of things, then popped back and prevented the worst things from happening...honestly!

So you see...if Wonder Woman can't do it...it can't be done!!!

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What Is Cerebral Palsy?  

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!!!

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