Monday, 18 March 2013

Little Fundraiser!

Been a while since last blog post.

Dude has been very busy raising more money for Special Kids in the UK . So far he's collected money at camp, dressed up as a reindeer with a collection tin and completed his walk round the local lake. He still has lots more plans.

He has decided that he will do a sponsored swim in half term (24th May - 3rd June). He has just learnt to swim on his back with only a foam woddle under his neck. You can see the determination in his face and all his little muscles working to find which he should be using to swim.

He says he wants to raise as much money as he possibly can before next camp in August (he says 11 thousand but I'm trying to get him to lower his target as its not very realistic).

After camp he wants to continue raising money, but for other charities as well.

Very proud of my little fundraiser.

If you would like to sponsor the Dude please visit his justgiving page at Thank you.

collecting money for Special Kids

After he collected money at camp

completed his sponsored walk

My Video 10/1/12 at

On 30th September 2012 the Dude did his walk for Special Kids in the UK. He was only expected to do a short distance as he tires really quickly due to his Cerebral Palsy. He also didn't have any splints for his legs as they had just been sent off to have a few adjustments to them.

Dispite all his challenges, when it came to it, the Dude managed to walk the entire distance around our local lake. 2 miles to be exact and he finished in a time of 1 hour 10 minutes. Im a very very Proud Mumma!

A little montage of his BIG achievment.

Friday, 17 August 2012

My Little Big Star

So we've been to Special Kids camp again!

This year was bigger and better than ever before and we had a fantastic time. We were both very sad to be leaving.

Dude caught the fundraising bug whilst at camp. The night before family fun day he said to me 'Mummy, I want to do something for family day. I want to get money for Special Kids. I'm going to have a think about it'
The next morning I had forgotten he had said this to me and when he came to our tent to ask me for one of his cups I wondered what for and told him not to go losing it.
Later that day one of the other members said to me 'You've been working him all morning..... He's been collecting money for Special Kids'
I genuinely hadn't a clue he was doing that as he hadn't asked me or anyone else that was near me for any money. By the end of the day he had collected over £50. I'm very very proud of him. Special Kids gave him a trophy and a certificate for the best fundraiser.

Now that we are home he has decided he wants to raise even more money for this amazing charity.
On 30th September he has planned to walk as far as he possibly can using his walking frame round our local lake. When he is too tired to walk even one more step I'll push him the rest of the way in his wheelchair.

If you wish to sponsor him please do he's such an amazing boy and walking is really hard for him to do his just giving page is here.

You can also text FELA87 £1 to 70070 to donate/sponsor £1

Saturday, 3 March 2012

March is Cerebral Palsy Awareness Month

Cerebral palsy (CP) is an umbrella term for a group of non-progressive, non-contagious motor conditions that cause physical disability.

Cerebral palsy is caused by damage to the motor control centres of the developing brain and can occur during pregnancy, during childbirth or after birth up to about 3 years.

There are different types of CP all with varying degrees of severity
  • Spastic (tight muscles) hemiplegia - is one side being affected.
  • Spastic diplegia - is the lower extremities affected, with little to no upper-body spasticity.
  • Spastic monoplegia - is one single limb being affected.
  • Spastic triplegia - is three limbs being affected.
  • Spastic quadriplegia - is all four limbs more or less equally affected.
  • Antaxic - Ataxia type symptoms can be caused by damage to the cerebellum.
  • Athetoid or dyskinetic - is mixed muscle tone – both hypertonia (tight muscles) and hypotonia (floppy muscles) mixed with involuntary movement.
Cerebral Palsy is caused by an injury to the brain before, during, or shortly after birth. In lots of cases, no one knows for certain what caused the brain injury or what may have been done to prevent the injury from happening.

Our Story

My son was diagnosed at just under 1yr old with Spastic Diaplegia Cerebral Palsy.

I had a bleed at 29 weeks. The neurologist we have seen said that he has Periventricular Leukomalacia or PVL for short. We know this because he had an MRI scan at 2yrs old. His scan showed enlarged, fluid filled ventricles that are in the middle of his brain. They should be thin slits but they are big holes. He has 2 tiny strips of white matter when there should be lots and the edges of his brain are jagged and do not meet the skull. His brain should be allot smoother and come up to his skull.
The neurologist says the bleed at 29 weeks starved him of oxygen and this caused the brain damage.

For my little man, his CP has affected his lower body mostly. He can not stand or walk un-aided. He wears AFO splints on both legs, a full body Lycra suit, gaiters for half an hour ever day, he is strapped into a standing frame for 1-2 hours every day, he is strapped into a corner seat with his AFO splints and gaiters on for 30 minuets every day, He has to use a walking frame at school and can use his frame to get about in buildings that are accessible, have smooth floors and space for him to manoeuvre. He has to wear a safety helmet whilst outside with his frame (in the park and the playground at school). He needs help with washing, dressing, toileting, getting in and out of bed, eating, all aspects of his education. He needs constant supervision in case he falls.

He has times where he loses all tone. His abilities at these times are much like a newborn. He can not even hold his head up. He spends his time either laid on his bed, the sofa or strapped and reclined in his wheelchair.

He CAN crawl, sit in a 'w' position (he sits on his knees with his feet out beside him) he can pull to stand, cruise round the furniture and he is incredible funny, smart and cute. He is a talented actor and attends stage school. He is very sporty and he has taken part in after school activities such as football and basketball. He has even tried out wall climbing with a local special needs club.

We find public transport hard. It upsets us when we cant get on buses/trains/trams because there is a buggy in the wheelchair space. Even more so when we're trying to get to a hospital appointment/going for an operation that we don't particularly want to go to.

There are days I wish that I could just bung a coat and a pair of shoes on him and go for a walk or to the shops. It would take 2 minuets. But instead I have to lift him into his wheelchair. Put splints and boots on his legs (which takes a while because I have to fight his high tone to get his feet in correct position before putting the splints on. Its like trying to bend a metal pole or a plank of wood)

At school he needs special seating, a writing slope, special pencil grips, 1:1 support, he needs toileting, someone to help him get his dinner, position him right at the dinner table, to cut his food and clean him up afterwards. He needs extra supervision in the playground, he has to use platform lifts to get up and down the stairs, misses lots of class time and often play time due to having physio therapy.

Last year he had an attendance of 70.3% due to the amount of hospital visits he has to have and illness.

Up until  October 2010 he was incontinent. I'm very proud of him for getting dry day and night as the doctors had told us he would never have control over his bladder or his bowels.

Its hard. But I wouldn't change him for the world. I'd change the world for him though!

Sunday, 14 August 2011


Iv been a member of a fantastic support group for special needs families since Dude was 2yrs old. Every year they've have a week where members can camp with the highlight being the Annual Family Day with a balloon release for all the children who have grown their angle wings.

This year we took part in the camp. We haven't previously been able to join in but I was determined to this year.

Not owning a car, I packed up a wheelie suitcase with our tent, tent accessories, foldy chair, air bed and bungee corded a folding crate, folding table, picnic rug, my pillow, a sign (so people could tell who I was since its online support group/charity) and our sleeping bag to the wheelie suitcase. I invested in a 80lt rucksack that had all our clothes etc in and the picnic bag (with our plates and food in) was hung off the back of Dudes wheelchair and Dude carried his Trabasack and toy bag.

Our journey was pretty good though our assistance hadn't been booked properly and the padlock on the last train for the ramp had been changed. The train guard didn't have the correct key so the driver and guard had to lift the boy in his chair off the train which I wasn't best impressed with.

We was met at the station by another member and driven to camp. When we arrived, most of the families were off on a day trip to Alton towers. With some help from a family that hadn't gone, we put up our tent and settled into our field in Wem.

We only stayed for 2 nights (and one wasn't spent in our tent as we were invited to stay in one with heating as it was cold) but we had a fantastic time. The Trustees and Volunteers did a fantastic job and I'm forever greatfull for what they do for us. Nowhere else in the UK will you find such a fantastic camp for special needs families. Nowhere else will you feel that you totaly 'belong'. Nowhere else will you be able to sit back and relax whilst your special needs child has a whale of a time with kids that are just like him and 'get' him and the other adults 'get' you and your situation.

Special kids is truly special to allot of people and we cant wait to camp again next year, but for longer. I WILL be driving by then!

I leave you with a little montage of Dude's time at camp.

Sunday, 31 July 2011

Summer Holiday's begin!

Summer Holiday's YAY! I love school holiday's! I pack tons of stuff into the holiday's so there's no time to be bored!

We kicked this one off with a trip to London. Arriving on Saturday 23rd July and staying till Saturday 30th July.

Our first outing was on the Sunday. I bought Dude a ball from the corner shop and we headed for St James's Park.

I avoid the Underground as much as I can. There is only a few stations that I can access with Dude in his wheelchair so I tend to stick to buses where possible. If I cant get there in good time by bus or from the stations we can access then we don't go. As you can imagine, hundreds of stairs and a wheelchair do not mix! We're quite fortunate that there is a bus that runs right from where we stay into Trafalgar Square and takes us to just about everywhere we wish to visit.

So, we took the bendy bus to Trafalgar Square and walked the short distance to the park. Finding a nice flat area of grass we set up our picnic and Dude decided that he would rather not play using his waking frame but stick to crawling on the grass. The ball I had bought him never came out the bag. He was too interested in the rats with wings Pigeons. He wanted a closer look and told off anyone who chased them. He came up with the idea of being a tree with a nest on his head so that the Pigeons would land on him.

Being a tree.

The tree disguise didn't work so he changed tactics and filled his hat with sticks in the hope that the Pigeons would take a stick and he would 'sneek up and take a closer look.' After a few hours playing and picnicking, we took a walk through the park to Buckingham Palace. We don't normally bother as Dude has never really been interested but this time he decided he would like to see the soldiers. We had to stand there till both soldiers had marched twice before Dude felt it was OK to leave now and head home via the bendy bus.

Day 2 of our trip saw us back in Central London via bus but this time we did our 'walk'. Our walk takes us past allot of the tourist, sight seeing places and is pretty easy with the wheelchair. Lots of things to look at and Dude loves the ride on the river cruise boat. We walk up to Westminster and catch the boat from there, getting off at the Tower of London. We walk over Tower Bridge and then back along the river towards Westminster. You get to see not only the Tower and Bridge but The Golden Hind, Clink Museum, London Bridge Experience, Southwark Cathedral, Globe Theater, HMS Belfast, OXO Tower, London Eye, Big Ben and various other stuff not in that order though. As we came up to Southbank (London Eye area) we noticed there was a Festival going on. The Southbank had been transformed into a seaside resort with a beach and a funfair. Dude pleaded with me to let him play but I was shattered from the long walk and promised that I would bring him back the following day.

We did go back the following day. This time I decided to take the tube since the local tube station where we were staying had escalators and Kings Cross and Westminster stations are both considered accessible(unless you take into account the huge step from the tube to the platform, not a problem if you have someone to get you down but would be with a power chair or traveling alone in a manual chair) both stations have lifts to all areas.

On the Southbank you can normal find various people dressed up. This time there was Batman. Dudes favourite character at the moment. After a quick picture we headed for the rides. I don't normally like to take Dude to the fair as I find it hard to lift him and keep him up right nowadays. He can't really sit on most rides whilst they're moving so i have to hold him up. I let him go on the carousel. I was given a free ticket for me to go on with him and we sat in one of the carriages rather then trying to stay on a horse. Dude still loved the ride and giggled whilst telling me he was going dizzy.

After a quick go on the cars we consumed Marshmallow Men and headed for the "beach". Although there was ramp access to the wooden walkway that kept the sand in place, we was unable to access it because of buggy congestion. I bumped him up instead and removed the boots and splints so he could go play. I kept him near me as none of the kids using the beach were nice and stopped him from playing. I helped him build a sand castle showing him to dig for the wet sand. After a few hours we went looking for an accessible loo. I found one just behind us and saw that the bridge we was by (which took us over to Embankment) had lifts. There was 2 sides to the pedestrian bridges with the rail bridge going between. I decided to use the side that was closest to us. Big mistake! I didn't realise that only one side had a lift back down to the north side of the river. I ended up walking all the way to Charring Cross Station. I then had to get back to Westminster to get the tube as Charring Cross is not accessible. We was fortunate enough that there was a bus right outside that was heading back down to Westminster and the wheelchair space was empty (buggies stop us from accessing buses on a daily basis. Very few parents vacate for a wheelchair and drivers wont move them either. I find it very frustrating as I don't have the option of folding down Dudes wheelchair and lifting him on unlike they do).

Wednesday was Harry Potter day. I had bought tickets to see Deathly Hallows part 2 but the person we was going with hadn't seen years 4 to Deathly Hallows part 1. We had seen 1 year at a time over the last few nights and only had year 7 part 1 to watch before the cinema trip. We watched the first part which just finished in time to get to the afternoon showing. We usually stick to the wheelchair bay and seats next to it but they was so far over to the side I decided I would sit Dude on my lap to watch the film. He was funny! The film was in 3D and he tried several times to hug Harry. 

With only two more days left to have outings we went to Clacton to visit a friend. Taking the tube through to Liverpool Street I negotiated the 3 steps from the platform to the ticket barriers with a little struggle. There is lift access from the barriers to the mainline area. I hadn't booked assistance for the trains this time and was worried about getting on and off the trains. My friend had sorted assistance at Clacton end and I just had to take my chances at the London end. I didn't need to worry. The staff were great and got us on without a problem.  My friend greeted us at the station and took us to the beach. It was a cloudy day but still quite warm. With all the nattering myself and my friend did and the cloudy skies, suncream didn't pop into my head. Yes, both Dude and I got sun burnt. I felt awful because Dude got burnt. It doesn't often happen with the last time he got burnt being in 2009. Apart from the sun burn, we had a fantastic day. I got to sit and relax after a kind family next to us took Dude under their wing and dug a hole with him and their grand kids. Dude had some fun trying to jump over the waves in the sea and then went rescuing "squids" off the beach.  Getting home was fun. Once we arrived back at Liverpool street i wasn't prepared to bump Dude up the flight of stairs to the opposite platform so decided to bump him down the 3 steps to the platform I had arrived on earlier in the day. The plan was to go one stop to Aldgate and catch the train in the opposite direction to Kings Cross. It would have gone that way if I had got on the right Tube. I ended up on a Hammersmith and City line train instead of a Circle line and of course this tube didn't stop at Aldgate. I ended up having to go all the way to West Ham which was first stop that I could access the platform that took us back. I added an hour on to our journey home.
Rescuing "squid"
On our last day we took a trip with Dude's brother to London Zoo. We took the bendy bus to Camden Town and walked from there to the zoo. I had bought our tickets online so we avoided the queues. Dude really doesn't do queuing and my knees kill standing still for long. We had a great day. The volunteers were fantastic towards both the children and one allowed Dude to hold a branch with a huge Caterpillar on. The only part we didn't access was the Animal Adventure area as there wasn't a thing that Dude could use. We ended the day in the shop as you have to exit through it now. I wasn't impressed with the price of stuff but then it is expected in London and at a main attraction.

I was so ready to go home the next day. Shattered was an understatement. Because there was no one to help me to the station I had to go by bus. In the time we had been in London 5 buses broke down because the ramp wouldn't go back in. It happened on the way home too. The bendy bus broke as we switched to the next one to take us to Kings Cross.
We finally arrived at the station after 1 1/2hrs and headed over to the information stand to let them know we had arrived. Booking assistance to get you on and off trains means you have to be at the station 20mins before your train is due. No last minuet dashes for trains for us. We get loaded onto the train before everyone too. Dude asked our helper to take us to platform 9 3/4. He took us to 1 3/4 instead. He had a meltdown on train as it was crammed. The train before had been canceled so we had all the passengers from that on our train too. He calmed and the rest of our journey was history!

We have lots more planned. Next weekend we go to Special Kids camp and we cant wait. Yes, we're CAMPING! Bring it on!


Friday, 22 July 2011

Funnies Part 1

Extracts from my facebook profile.

Ha ha (Dude) started singing but kept stopping and wigging his finger in a circle round his face then starting again. Was wondering what he was doing then realised he was 'loading/buffering' lol

tut tut (Dude)'s trying to teach the cat to sit and roll over. weird thing is the cats responding lol 
ha ha (Dude) : *burp* ahhhh jay! (the cat) you smell! lol

(Dude): so mum what we gonna do in march?
Me: :S

(Dude): mum what would happen if all the children swoppeted with farm animals and they went to school?
me: ermmm ............

(Dude)'s declared he's batboy and is nocturnal! Not far off :/

Got (Dude) a bag of jelly beans from the traditional sweet shop. He thinks they're Bertie Botts every flavour beans and is trying them all so he can give me the vomit, earwax and booger flavour ones! Nice child!

I'm not sure if this is a good deal! (Dude): if you let me sleep in your bed with no splints I'll let you have a sleep in!

Haha and now I actually agree with summit he's just said: why are these idiots cutting their grass at this time of night? If it was me I'd do it in the morning not at night! Did they come home and say oh no I forgot to cut my grass! Crikey! I gotta do it at midnight!

(Dude): Mum! My arm just exploded! *whispers* ah man! I hope I grow another one!

Sat (Dude) on side of pool. (Dude): I have water in my pants! :O lol

(Dude): why is the soap so far away. Maybe people have long arms. Ah spos them monkey people are about again. Are they your people mum?

me: Mrs H says miles has the sames shoes as you!
(Dude): i haven't been to wales have i?
me: MILES not WALES!
(Dude): oh, is there whales there?
me: i don't think so, they have dragons though!
(Dude): I'm not going to wales mummy!
(evil laughter)

can hear a tiny sad voice ' I'm looking for my first customers' may have to
visit the shop (Dude)'s just created in his tent. didn't realise it was a shop, just thought he was 'camping'

aww now hes saying 'if anyone knocks at the door, welcome them in. if they're kids, welcome them in and give them pocket money. I'm gonna get payed for this'

(Dude): jay, do you have thumbs? (lifts the poor Kitty's front paws up) do this jay? (wiggles his thumbs in the hope the cat will copy)

(Dude) just shouted me
(Dude): muuuuuum, do ladies have beards?
me: erm...... sometimes :/
(Dude): if they have beards does that mean they're magical?
me: ermmmm.................... (thinking HELP!) ??? :S

(Dude): call a taxi will ya mum!
me: what for?
(Dude): I'm going on holiday, see! *holds up party bag full of toys and his umbrella, dressed only in a t-shirt*
me: where you going?
(Dude): London! to places you don't need underwear cos I've lost all mine!
me: your underwear isn't lost!
(Dude): Oh!