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!

Wednesday, 13 July 2011

When will someone listen?

I'm fed up now!

All my son's life I've been battling people to get them to listen. When he was born it took a whole year to get someone to listen that there was something wrong. It took 18mnths of me saying 'I think he's autistic' before they finally listened and did the assessments. It took 3 years of me saying ' his speech isn't right, hes not progressing' to be told that actually I'm right and he needs speech therapy. Iv always said that his upper body is affected by his Cerebral Palsy. They (the doctors/physio/OT) have always said 'its only lower limbs affected' the summer before he started nursery his OT did a hand function test and then agreed his hands were affected too.

Since Dude started at nursery I've been bringing up that he's finding writing difficult. He's having spasms in his hands and cant make the physical movements to write.He couldn't count when he started nursery despite all my efforts. OT had said that when he went up to his current year she would sort out a computer to help with his writing. This has never happened. I fought for a year for special seating to be put in place so that he had supportive seating to allow his hands to be freed up enough to try and attempt to write. The seat provides support to his lower body. Dude has dynamic tone which means if his legs are working hard to keep him upright then his hands/arms are too. You try and write with your arms in spasms! its not going to happen!

This years report has just come home. Dude can not write. He can mark make with some marks having meaning. He can not write his name, he can not count to 10 on his own but can get to 6 OK. He cant use phonics to sound out words when trying to read. He can only read very few words on his own, mainly I and a. He cant read basic words. I have been telling them this for 2 years now. Nothing has been done to help him. They're just leaving him to fall behind and its frustrating and upsetting both of us. His seating isn't being used and i feel that is part of his problems with writing but i also feel he really does need technology to help him. Our biggest problem is he has nothing in writing stating what help he needs. A kid like Dude should have a statement of education, care plan, IEP's etc..... Dude has IEP's which i have no input with and only have toileting and physio targets and that is all. He is 5.5yrs old now.

He needs help but no one is listening!