Sunday, 14 August 2011

SPECIAL KIDS CAMP 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.

video

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!) ye.e.e.es ??? :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!

Wednesday, 29 June 2011

The Magic Coach!



So today was Dude's first ever school trip. We arrived on time by some miracle  and I helped load Dude on to the coach. It was one of my fears that he wouldn't be strapped in properly so I just went to make sure it was done right.

I walked round the side of the school to where the coaches were with Dudes 1:1 The driver was there ready with the side entry lift already down. I went on with him which was quite scary as the wheelchair rolled back abit when I took the brakes off to wheel him onto the coach. The driver clamped down the chair using the clamp points (I was worried he wouldn't bother using the proper clamp points). I had to ask for a seat belt. The driver said to me 'he doesn't need it he has straps on his chair' I had to point out that the harnesses on wheelchairs are not designed as seat belts and that he requires a seat belt like everyone else. He then put the seat belt on Dude.

With Dude safely on the coach I left him to it! Standing beside the coach one of the mums said to me 'we're just having a giggle at the writing on the coach' yes the picture above shows you what we we're laughing at. Turns out this particular company can't spell WHEELCHAIR.

One coach of excited 4 and  5 year olds disappeared round the corner.

They were slightly late coming back. I asked how the trip went and both Dude's 1:1's said 'I wouldn't say it was easy but it was fun! He spent most of the time looking at a map and telling us where to go' I thought 'typical Dude' He did say his best bit was seeing the lions so least he did pay a little attention to where he was.

On the way home Dude told me he liked going on the magic coach. He thought it was great that he could get on the coach with all his friends.

Now that this trip went well and Dude had a great time, I can relax the next time there is a school trip :)

Tuesday, 28 June 2011

New Adventure!

Tomorrow will be Dude's first ever school trip and he's going without me.
I'm excited for him because he does EVERYTHING with me.

When 'school trip' was mentioned in a conversation with his teacher, I said to her 'You do realise that there's allot of planning to do when take 'Dude' any where don't you?' She looked shocked at me and asked 'Like what?'
Well first of all they needed to book a wheelchair accessible coach so that he could stay in his chair but be with all the other kids. He can't sit on the standard coach seats or climb the steps. Health and Safety regulations prevents them form lifting him and they would have had to hold him the whole journey, preventing him from slipping down and off the seat.
They also had to look at the venue. It's a local wildlife park that they have chosen. We had been once before and found it nearly impossible to get round but it had just opened and was 2 years ago. The teacher decided that they would go have a look round and plan round parts that weren't accessible.
I told her then that I didn't really want to go as I felt that he needed to go do something without me and be like the other kids. His teacher agreed and said that they had already decided that I didn't need to come after speaking to the Physio that does their moving and handling training. They did originally want me to go but he told them not to make me go as it would be a good break for me.
They identified 3 places in the park that wouldn't be suitable for Dude's wheelchair and checked out the toilets. They told the park that they need to be as close as possible to the entrance as they have a disabled child coming with them. The teacher said she was annoyed at their response of 'its first come first serve with the parking as we are fully booked with coaches' asked whether any of the other coaches had any people with mobility problems they were told no! I've told the teacher I'll send in Dude's blue badge as that may help with the parking problem.

I'm nervous. I'm frightened that they'll bust the wheelchair. I'm scared that the chair won't be clamped right in the bus and that they might have problem's toileting him. I'm also worried he wont get to see anything and he so loves animals. He's desperate to see the Lions and Tigers as Big Cats are his 'thing'.

I'm just praying everything goes smoothly for him and he has a fantastic time. I shall spend the day chewing my nails!


my Dude just loves animals


Thursday, 23 June 2011

Dude rocks! 1-5yrs

Dude was 2 weeks off his first birthday when he was diagnosed with Cerebral Palsy. The doctor had said not to expect him to do anything. He started seeing a physio and acquired a standing frame and a corner seat which he was to spend time in everyday. Dude started to open his hands allot more and rolled from side to side better. He was given special boots and I was given exercises to do with him each day. I found his first birthday hard as toys for his age just didn't meet his physical side. I ended up with a ball pit. I thought he would like to lay in it and play with the colourful balls. I didn't realise that play balls were hard to get in January. His father and I split a few weeks after his birthday.




Two months after the start of his physio Dude started proving them Doctors wrong. He started to crawl! He couldn't yet sit but crawling meant he could get around much better than with his commando crawl. It only took a few months before he was whizzing around. He likes to be really close to the T.V. and started holding on to the T.V. table so he was up on his knees. He was 15 months old when he accidentally let go and flopped back down and SAT on his knees. He started to sit more and more although this wasn't a great position to sit in. His physio said it was called the 'w' position and would put strain on his hips and knees. She tried getting him to sit in other positions but he just wasn't stable enough to do it.

At around 18 months Dude started to pull to stand. With him now doing this he was tried with a Kaye walker. His physio thought he might have been to young to master it but not Dude, he walked!

At his check up with his paediatrician when he was 20 months old I pointed out that I thought he was a bit odd. He flapped, rocked, lined things up, had unusual fears, made repetitive noises, couldn't deviate from routine, struggled with noise and crowds and had sudden tantrums over what appeared to be nothing which he couldn't be comforted for. I suspected he may have Autism but the paediatrician literally laughed in my face and said that all kids where like that.

At two and a half years old Dude had his first operation. His legs had become too stiff and were stuck crossed over (scissoring). Nappy changes had become extremely difficult so it was decided that an op to release any tight tendons and to put Botox in his muscles to relax them would be beneficial. This is where we discovered that he doesn't like to wake from General Anaesthetics very well and that he had a high pain thresh hold. It was supposed to be day surgery so out on same day. Dude had other ideas, not waking up so ended up spending time on the ward. When he was released we was given a pain management sheet but Dude didn't need any pain killers. It was very hard to get him to stay still and rest. He just wanted to crawl about like nothing happened. The tendon release worked but the botox didn't. Although he could now open his legs and didn't scissor, he did still have very high tone in his legs. We also saw a gastroenterologist as Dude had problems with his bowels from birth. He was diagnosed as having chronic constipation and had never emptied his bowels properly which resulted in an impaction. He was given Medication to clear him and to have regularly. He was also sent for an op to put a probe in his stomach to asses his reflux that he had from birth. This resulted in another diagnosis of Sever Reflux. He was lucky as only his stomach was damaged but his oesophagus was fine. We visited a neurologist as Dude had started having jerks and it was queried that he might have epilepsy. He had and MRI scan of his brain which showed he had a form of brain damage called Periventricular Leukomalacia (PVL). He had huge holes in the middle of his brain, hardly any white matter and instead of his brain meeting his skull it was jagged all the way round. People often ask me if his brain will get better or if it can be fixed. It can't be fixed. Dude was sent for tests for epilepsy but they came back as normal. Dude was changed from just boots to boots and AFO splints. He Had a hip x-ray that showed his hips were underdeveloped and he didn't have much in the way of sockets.

3 years old and Dude started at nursery. He attends a mainstream school. We've had ups and downs with access and support but we're quite happy where he is. I am concerned though as we have nothing in writing. Kids like Dude normal have care plans, statements excetera so that support levels, education needs, access, equipment and therapies are insured. All Dude has are I.E.P's which cover his toileting and physio. He was given the Autistic Spectrum Disorder (ASD) diagnosis. The Speech Therapist had also picked up on signs that he was ASD and initiated the assessments once he was in school. Dude went for more tests about his jerking which was almost always in his sleep, for floppy episodes where he would lose all muscle tone and couldn't even hold his head up and also for some episodes where he would stop breathing. I was told he had Non-Epileptic Mycolonic Jerks and Sleep Apnoea. They wasn't sure if he has Obstructive or Central Apnoea's though. They didn't know why he kept going floppy. Along with his splints and boots Dude now needed to wear a Lycra suit to support his hips and back.
Because of Dudes floppy do's he needed a wheelchair that would tilt as a fixed back chair just meant he flopped forward or sideways and closed off his airways. Dude only does this a average of 1-2 times a week and as we still didn't know what caused it wheelchair services refused to issue him with a chair that met his needs. To top that the chair they had issued was also unsuitable for me. I dislocate very easily due to Eherlos Danlos Syndrome and the handles on the chair were so low down that they put enough pressure on them to dislocate them severely. I ended up on crutches and couldn't weight bare. I contacted social services as I was desperate for help. I couldn't feed, wash or get Dude up and down the stairs. We had a stair lift fitted but I was unable to even lift him up onto it or onto the silly bath lift that had been fitted. Social services refused to help until I told them I'll get a taxi driver to help me into their office and sit there till they did something and that if anything happens to Dude then its on their heads as I contacted them for help. We got carers for 8 weeks when they suddenly dropped them. In the time we had careres I was assessed by adult services and was placed on there critical level as needing help but they said they don't provide the help I needed which was with housework and cooking. Even meals on wheels had been stopped but if it hadn't they would only provide food for me and not Dude. These were hard days. I did eventually get well enough to do all the things again but still I struggle with the housework and lifting Dude. When we had the ''adaption'' done I had asked if they could please adapt the garden so that Dude had access to it. After a battle they put a ramp down to our front grassed area and a 2 meter by 2 meter playing area. He still doesn't have enough access to the garden to play like the other kids. I cant afford the £6k I was quoted to adapt it so he spends much of his time indoors. We was assessed as needing one night a week over night respite in Feb 10. t still hasn't started as there was moving and handling issues as Dude can not self transfer into a car.

He started reception (foundation 2) last September. He's come on so much since then. I love his current school teacher as she's managed to get him doing things that I thought would never happen. In October we saw his paediatrician for our 6 monthly check up. Dude was still incontinent and I was told not to expect him to be out of nappies any time soon. 4 weeks later and (I have to admit, this was mainly down to school) Dude was out of nappies in the day except for whilst out as public toilets were kind of a nightmare. Hes now out of them totally in the day. I'm so proud of him.
I applied to a charity (which I hated doing) to get Dude a wheelchair that was much more suitable for us both. It was decided that he had mixed tone cerebral palsy and they finally recognised that his whole body was affected by both the high and low tones. The new chair meant that instead of having to just lay there on the sofa, missing out on stuff, he could just be tilted in his chair and still go out even if that was just to go to an appointment or shopping.
This year he had  another operation. His legs had become very stiff again and his feet were getting stuck pointing down. He had botox again and serial casting. This meant he was in plaster for 8 weeks but when the last lot came off he had flat feet. He amazed us even more when he decided to walk unaided for the very first time. He now practices lots at home and school so hopefully one day he may get rid of the walking frames for good.

So this is where we are up to now. I'm sure there will be loads more to share with you. I know I haven't shared everything he's achieved or done yet as this post is long enough.
p.s. if you managed to read all of the post, well done and sorry it was so long!




Tuesday, 21 June 2011

Theres something wrong with my baby!

I knew from the moment Dude was passed to me that there was something not quiet right. I didn't know what, but his legs looked funny. As if they had been stuck on wrong. His father had told me there's nothing wrong. Doctors and Nurses on the Maternity Ward said that there was nothing wrong.

At his check before we had been discharged his left ear wasn't showing signs of picking up any sound. They had said this was probably fluid and to return in 2 weeks for another hearing test. We went back and sure enough it had been fluid. It had cleared and he passed his check. Phew, I was pleased.

We had several visits from Midwifes and Health Visitors. No-one suggested there maybe any problems with my baby. I still had concerns about his legs. He screamed ALL the time. only stopping if he was swung gently in his moses basket. I had to stop breast feeding him after 4 days because he just had too strong a suck and had caused allot of damage to me. He wasn't getting any milk because he was sucking too hard. I felt awful that I had given up, but we were both crying. Me because I had to feed him and him because he was starving. He started getting jaundice, wasn't really weeing much and was constipated so I knew he HAD to go onto bottles.

He didn't react to things you would expect him to and over reacted to other things. The Midwife did his heal prick test, warning me he may scream. He didn't. there was no reaction. He stayed still in her arms. She joked 'oh your a hard boy. You off for a tattoo next week?' He startled so easy to noise though. A cough, a sneeze, sudden laughter, the hoover, any loud or sudden noise resulted in him throwing his arms back and crying.

At 4 days old his Uncle and Aunt came to see him. They thought it was cool that he could hold his own bottle. He often had his arms tucked up to his face, never unclenched his fists unless he was asleep. All they had done was prop the bottle up with him in this position.

3 weeks old and I had him at the doctors already. He seamed to stop breathing whilst he was feeding. I was also concerned about his bowels as it seamed quite difficult for him to go. I was told to give him more water ( I was already giving him lots). Dude spewed whilst in there and the doctor asked if he had just had a bottle. I told him it was a good hour ago. He asked if he did that lots? He did so he said that he wasn't stopping breathing, he was breath holding because he had reflux. We was prescribed gaviscon to put in his bottles. This kid was smart though. He refused ever bottle with the gaviscon in it.

At his 8 week check the Health Visitor decided to check that the creases in his legs were symmetrical. I told her she would be lucky to get his legs down to check. They were always tucked up to his chest and i found it hard to get them flat. She struggled to get them down and initially thought they didn't match. She released them and pulled them down again. this time they did. She hadn't got his right leg down far enough the first time.

At 6 months I really knew something was up. He never opened his hands, his legs were now down but he was often as straight as a board. He couldn't grab his feet like other babies and changing his nappy was like trying to bend a plank of wood. I told the Health Visitor that I thought something was wrong. I was sure babies could at least roll about by this age. I asked her when a baby should have control of their eyes as he seemed 'cross eyed' allot. I was having difficult with weaning as he choked of everything as well. She assured me he was ''normal'' and that he was just a lazy boy but did refer him to have his eyes checked as both myself and his father have lazy eyes.

At 7.5 months we was invited to a group 8 month check up. All the other babies were sitting. All were crawling and some were even pulling to stand. My baby however just laid there. dead straight, pointy toes but could roll to his right halfway but needed a gentle push to get to his back. he couldn't roll from his front to his back though. They weighed him, then tried to measure him. They couldn't because his feet just wouldn't bend flat. The Health Visitor again told me he was just lazy and to come back in a month if he still wasn't sitting. We did this 3 times. Both at 8 and 9mnths I was told hes just lazy. There was nothing wrong with him. On the third time we went to see the baby doctor as well as he still wasn't able to do anything. He said, 'I don't think theres anything wrong, but I'll refer you to a consultant to put your mind at rest'

All Dudes family were saying to me, 'he probably has tight ankle tendons, they just release them and he'll be fine' I on the other hand was thinking more down the lines of Cerebral Palsy. I was pretty certain there was more too it then 'just' tight tendons. The kid was now not sleeping, hardly ate, sometimes going a full 6 weeks on just milk. He gagged on everything. Drowned on milk. Never opened his hands or grabbed his feet. If he had a toy I had to force his fingers open enough to wedge it in.

2 weeks before his 1st birthday, with his father in hospital due to liver problems from alcohol abuse, Dude was seen by a paediatrician and a Physio Therapist. It was noted that his toes were splayed and his legs rigid. Dude's father asked 'is it serious doctor?' his reply was 'Yes Quite. I think he has Cerebral Palsy but cant be sure till he's seen the rest of the team.' I was relieved. He didn't tell me anything I didn't already suspect. I was actually happy. His father called me 'cold' and 'morbid' because I was happy that my baby had just been diagnosed. He didn't get that I was happy because I KNEW there was something wrong and no-one had listened. A whole year to be told 'yes your right' and I now knew exactly what was wrong. It didn't change Dude. It just meant now I knew what to do with him and most importantly WHY he was how he was.

Dude was sent to the Child Development Centre where he saw a whole team of people. They noted that his legs where rigid though now he could commando crawl. He still held his hand's in fists but no-one would acknowledge this. He was diagnosed with Spastic Diplegia Cerebral Palsy. He had increased tone in his legs and increased and retained reflexes. The next few weeks saw our house fill with specialist equipment and our calendar filled with appointments.

I was about to discover how hard it is to have a child that was Differently-abled!


Monday, 20 June 2011

.... and then there was Dude!

I had only been with Dude's father for a short while, but when I found out that I was pregnant with him I was pleased. Pregnancy was pretty smooth with him. That is until 29 weeks when I started to bleed and have contractions. My Health Visitor had sent me up to Labour Ward where they prepared for an early baby. Alerting neonatal unit that a 29 weeker may be born pretty soon.

He didn't arrive. I had been given a cocktail of medication to 'slow' the labour. I was still having contractions and dilating but he wasn't about to say 'hi' any time soon. I was kept in, put on bed rest and had steroids to strengthen his lungs in case he did decide now would be a good time to arrive.

After a week I was sent home on stricked instructions to not venture more than 15 minuets away from the hospital and to rest. I was again admitted at 32 weeks but they didn't seem as panicked. I was told 'if baby comes, he comes!' Again they arranged a cot for him in the neonatal unit, but again it wasn't needed. He managed to stay put until 3 days before his due date. Monday 30th January 2006, Dude decided to grace us with his presents.

Labour was not good. I went in with contractions at 10 minuet intervals. 4cm dilated and in Pain! I asked for some pain killers as the gas and air just made me sick and gave me a feeling of being out of control. I was given Pethidine at a half dose as I'm under weight with is part and parcel of Eherlos Danlos Syndrome (not that I knew I had that then)

Things started to go from bad to worse. At each contraction his heart rate dropped to 90. taking a while to recover after each drop. Worried, I beeped for a Midwife. A receptionist came to me a while later and said not to be silly, its fine. My guts said different. When a Midwife finally came to me, my baby's heart rate had gone. Unable to find one externally they had to break my waters and put a tiny clip onto my baby's head. Doing so revealed his heart rate had dropped to 50. The room filled with people. At 8cm dilated my baby was pulled from me. Not placed on my chest, but taken to be shouted at by a Midwife to 'BREATH!' Some minuets later he started screaming. Breathing and red he was given to me. He screamed solidly for an hour.

I wanted to try and breast feed him. I found it VERY painful but decided I would try hard as it was the best start I could give him.

When we was up on the Maternity Ward, I turned to his father and pointed out that I thought his legs looked abit funny. Dudes father told me to 'shut up' and 'dont say anything' cos he wanted us to go home.

After 2 days, we were discharged. The paediatrician had done all her 'tests' and though he was presenting as deaf in his left ear and was noted that he was 'very strong' with a 'very good grip' with jokes about the steroids I'd had to strengthen his lungs, no-one (but me) had any concerns. We were to return in 2 weeks to check his left ear again.

We finally had Dude. Loved, wanted but unknowingly 'Different'.