Dave Cameron's Big Society in action!

This week I have mostly been learning to walk a little again. This is not my only mammoth task although is the task I have to have the most patience with and I tend to lack patience where my illness is concerned.

 

Disabled Parents- Pass it on.

 

I created this new ,voluntarily run ,Facebook group page ran for disabled parents, disabled children or disabled parents with a well child. The group involves parents uploading a photo of any item they found outstandingly useful for independent parenting but no longer need. Not charging anymore than postage for the item so that another disabled parent or disabled child, healthy child can get a better quality of life just for the price of posting the item. Many disabled parents spend money they can ill afford, on baby equipment or baby clothes that they hope will be an accessible solution to helping them with a daily parenting task, only to find when they get something home, it is definately not accessible. I brought three car seats just praying one of them would actually enable going out with my son without a carer. I spent hours in shops trying their models but of course these display models had been worked so much by other customers, the harness buckle was a breeze to undo and do up etc. When I got the seat ordered and home I realised the new buckle was impossible, I realised I had neglected to look at various aspects of the seats which rendered it totally awful. I must have ended up spending two hundred pounds in my desperate car seat pursuit.

 

This group should eliminate expense and randomness of whether something will work for a disabled parent. The person wanting an item on the page will only need to pay for postage or courier to the person passing an item on. If the item is not working for the receiver they simply pass it back on to the group page and charge for shipping only.

 

I know Freecycle exists in the UK but very few disabled people find it very easy to jump in a car,drive into the back of beyond to try and pick something up without the need for a carer to go with them, to potentially jump out the car, run up a flight of stairs, negotiate a busy road to get to a property and lift a heavier item back to the car. Posting is often the only way disabled parents can get hold of anything easily.

 

So any disabled parents, with healthy or disabled children want to check out the group, contribute towards it by passing on anything etc please do come on by,I will be very glad to see you.

 

Photo shoot for the Sunday Telegraph Stella magazine.

I am to be in the Sunday Telegraph because well that is just the way I roll baby. A brilliant journalist , Eleanor Tucker, felt inspired to write about me, my determination I share with many parents to just be a good mother despite my severe physical limitations. To write about my blog and not forgetting my Canine Partner assistance dog. I expect this article to not be out until the end of October but will let every one know shamelessly. I also have a photographer for the ST coming over, that will be exciting as we have no professional photographs of my son and family as no photo studios in Gloucestershire are wheelchair or buggy friendly, nor can we afford hundreds of pounds worth of photos! I am collecting useful resources, blogs, organisations, Facebook groups that support disabled parents so when the article is out there ,there will be a well timed post of a wealth of information and support available to new visitors to my blog.

 

Small talk.

I have been involved with a Linguist researchers work,a chap named Ben Aldridge, at Liverpool University , in his quest to write a book on children's communication in the early years. This really interests me as is a subject close to my heart. At the moment his reasearch involves answering questionnaires on Christopher's first words, word sequences etc. Mr Aldridge is a modern chap and aware that not all of us can travel their house let alone the country and will be conducting interviews via skype, I expect Christopher will do his usual by just shouting "iPad" at the man!

 

Popping by saying hi to the guys off The Greedy Crow app.

 

I would like to mention this great online book that has kept my son entertained so I could get emails done, exercises, setting up of a Facebook group, arguing with Occupational Therapists for still not getting the ramp in our house to help me get out yet somehow expected to attend at least eleven hospital appointments in the next month!

 

The book is called "The Greedy Crow" by Jason Harris, it is an interactive app book so don't make the mistake of trying to find it in iBooks, it is actually located in the app store.

 

I am always sceptical about animated books, too often the book loses a story line because too much emphasis is put on animation, a bit like watching a block buster special effects film. With "The Greedy Crow" I was pleasently surprised. The story is like a modern version of Mr Greedy from the Mr Men, a crow flys down for a good old worm feast, eats and eats and eat, ignores warnings of his over eating which will result in an inability to fly etc, eats some more and then a fox arrives, the rest I will leave it up to you to find out what happens. With easy pictures of a bird for toddler to poke at to make move, sounds and the bright flat colour of illustrations this book kept my son entertained for a good five minuets which is a lengthy time for Christopher. Thank you Greedy Crow author and producers.

 

Grumpy father.

 

My dad, a great seventy year old, has had enough of his kids having finally all moved out but their stuff still remaining in what my parents now fondly nickname their "Big Yellow Storage garage". Latest whine is about a light weight kick out stroller that we gave to my mum for using with her grandchildren but the reality is the grandchildren are never taken out in it. So as both my sister and I have been asked to stop abandoning junk over there, it may be time to actually go over and review our wears and argue with one another as to who should have what, usual sibling stuff. If neither of us can store the stroller then I will "Pass it on". Someone potentially is going to get a lightweight, very easy to kick out and fold up buggy for the cost of shipping, not a bad deal considering it cost a fair bit!

 

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"iPad mummy",great apps for kids and parents!

It's a total turn up for the books when one of your child's first words is "iPad"! Every morning my husband brings our son upstairs so my child can be with me, every morning I get "iPad mummy".

 

I can not fault these tablets for accessibility for any disabled person, the lightweight design, the quick Internet access, the world at your fingertips without having to lug a heavy laptop out. As I physically can not lift my laptop, nor even get it out from a low drawer where it is housed this iPad has been invaluable! It has been a major source of keeping up with friends and family on Facebook, the ability to download a game is excellent.I can rattle of blogs on the iPad now thanks to "Blogsy" app, access emails, fire of letters of complaint to services that are failing my husband and I at a time of most need. I know I could do all this on a laptop but the whole process is bulky, slow, difficult and always more complicated than it need be.

 

I totally struggle to get books to read to my child at the moment, try holding several books and crutches whilst ballancing on one weak leg then holding books in mouth and trying to get over to a chair to read to little person, it is a mega mission and difficult ! Praise the lord for geeks who made tablets,ebooks, apps and Kindles! There are hundreds of books, many free, at your finger tips in one light weight bit of kit.

 

I don't want every activity ,done with my son ,to be academic based. I question whether children who are constantly pushed to be academic end up rebelling and exhaust of learning too early. Therefore I need games at my finger tips as well.

If my son insists on iPad every day then an app has to work for its money, it has to keep me interested enough to load it up and do it with him! According to an article in Gurgle magazine ( the best down to earth parent magazine, in my opinion), studies suggest that technology is not all doom and gloom for a child's development as long as an adult is with the child discussing with him or her about what they are looking at and doing etc. So Mr Apple or in daddy's case Mr Android, your apps are well and truely being put to the test in this house!

Here are some of our favourite apps and ebooks for very young children:

Itsy Bitsy Spider- by Duck,Duck,Moose-£1.49 iTunes app store.Also on Android.

Amazing app, basically involves the song being sung in the background whilst your youngster prods the spider and every thing else on screen to make move, jump, talk, squawk, hide, fly etc. There is an egg hunt and really big images that allow a child with less definite movements to prod and poke at every thing on the screen and make it do something. Totally worth paying for app for a boy or girl, my son and I spend a good eight minuets playing this every day!

 

Wheels on the Bus-Duck,duck,moose-£1.49 from ITunes app store.Also on Android.

 

Personally I am not so keen on this app as it seems a little less involved than Itsy Bitsy, however my son loves it, you move the bus along by swiping ,prod things in a picture to get them to move and all whilst the song plays opperaticaly in the back ground.

 

A day at the circus. £1.99 in I apps store and android, no "in game" purchases required,basically £1.99 covers it all

 

20 mini games including:

Play with the clowns instruments.

Feed circus elephants and lions.

Juggle balls.

Read of have a short story read to little one.

 

 

Old McDonalds Farm-Kids Games club.Free on apps store for iPad.

There are several games to play with an infant here.

1. Tap the animal (three animals shown and you are asked to find a pig for example).


2.Who is hiding in the barn.

3.Old McDonald song

4.Puzzles

 

Keeps my son entertained for quite a while and most of the game is free so there is nothing to loose!

 

Dino Hospital-Doctor Game for kids Lite. Free from apple app store.

You get three poorly dinosaurs for free, if you want to branch out in your medical skills then you need to get in more pooly patients and buy them in, bit like the UK NHS, without us poorly patients the doctors, Physiotherapists,Radiographers etc ex would be up a smelly creak without a paddle!

You treat these dinosaurs, send them for X-rays, give them medicines, a very cute game really, the aim is to make the creature feel better.

 

Ebooks and story apps.

 

On Kindle and Kindle Fire:

Hairy Scary Spider by Paula McBride. £1.95

Hairy Scary spider from www.amazon.co.uk

 

 

Silly monsters ABC by Gerald Hawksley - £1.92 from www.amazon.co.uk

Great rhyming, simply and beautifully illustrated children's book. If your child likes Dr Sueuss this will go down well.

 

Pedro,The ugliest dog in the world by Papa G. 0.77p from www.amazon.co.uk

Perhaps a book for a little older child as the books uses words like poo, snot and fart and a child of three and four can't get enough of these words where as a two year old and younger probably won't get the cheek of it all.

 

Tablet,phone story apps and iBooks stories.

Read me stories. Free app in app store on iPad, iPhone and android. However there are only a few books in app you will need to purchase more for £1.49 once you have read the freebie books if you so wish.

"Read me stories" app icon

 

I would say the majority of free books on offer in this app are for the older child, aged four to six, however the animal based stories are more geared up to a younger reader of aged 1 upwards.

 

Magic town-Apple app only. App is free and you get a few free books but will have to subscribe if you want more.

 

A lovely cheerful app, please watch the you tube official video to get a taste of what the app offers. Personally I feel Magic Town offers more well known children's books from well known authors than Read me stories offers. However Magic town charges £7.49 a subscription a month where as with Read me stories you will expect to pay £1.49 for a series of five books and that is a one of cost, no subscription. This is where disabled parents have to weigh up their child's needs with extra cost, prehaps the monthly subscription is worth it as getting to a library or book store for our children is not always accessible.If you think about well known childrens books such as Elmer the Elephant, this book alone costs £4.49 on iBook store, so £7.49 for a lot of access to a huge number of books a month seems good value.

 

iBook store free books.

 

For 6-24 month old child:

 

The Animal Book by Monica Dinh.

Very big picture of an animal and in simple big letters, the word of the animal is written underneath.

 

Out and about-by Salem and Agnes De Bezenac.

Lovely story, illustrated with simple, sweet pictures of a daddy with his shy little boy going out for a walk together.

 

Garbage, Monster, Burp-by Tom Watson.

 

For an older child aged 4-8 I would say as the story is a little longer than those books that keep the attention of a younger age range. About a friendly monster, with some hero children, working together to save their town.

 

Games for parents when stuck in hospital!

 

We can't forget ourselves now can we!

 

Angry Birds have a new Halloween version coming out very soon for apple and android, we all love a bit of Angry Birds.

 

Where's Wally on the iPad, or Where is Waldo on the android phone is rather addictive and has the same theme and point to it as the legendary "Where's Wally" books.

 

Bag It lite on iPhone,iPad and android. is just so cool and free! It sounds a dull game where you have to stack groceries in a bag so as to not break groceries or the bag, all in a time constraint, a more clever tettris game where you have to think of weight as well as shape.

 

 

The tablet or smart phone is a totally justifiable great piece of kit for any parent and child. It is worth the rather costly price of tablets so go out and get yourself one if you don't already own one. It is difficult for those with deteriorating conditions and pain to feel physically able to go out with your little ones every week, so put aside those in your life that feel they can have a say in what you own as a disabled person, yes we all know some of these idiots, and go buy the best! x

 

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Goodbye Paralympic games.

Thank you to the UK channel 4, I have felt totally part of something so exciting. We have come third in the medal tables and we left with 120 medals!

 

Truely inspirational to watch and as one of the Channel 4 presenters said today, "today disabled people can walk a bit taller and able bodied people be in awe". We say good bye to the Olympics and Paralympics once and for all in a few minuets. We will watch Coldplay perform along side a festival of fire. It will be all singing and dancing and so it should be for all those athletes, an amazing games organisational team , volunteers who have proved with thinking about accessibility, dynamic thought, a can do attitude and communial support, all our world atheletes can be in an environment where they can compete and strive to be better than the next person!

 

However as we say good bye to the British games, disabled people are left wondering how long the new positive ,public opinion of disabled people will last? Previously there have been reports of hate crimes soaring towards disabled people in the UK, fuled by various poor journalistic articles flooding our newspapers, it would appear the games have lessened these feelings. However perhaps the darker side comes from those that should know better, should be more intelligent than just lumping ALL Disabled people as scroungers, we expect the tabloid journalists and readers to come out with ill considered statements but those employed to work for the people,we expect better things!

 

Our welfare system is out dated, it needs modernisation, there is not a genuinely disabled person who would not agree with this. We all know that work needs to change so work works for disabled people, whether we need help wiping our bottoms , feeding, washing,protection from self harm or have regular major surgery, I know of no actual disabled person who does not wish to work, oh sure there are lazy itis people ,as there is in able bodied groups, who you can bet had a poor work ethic before and and we're anxious to gain a disability label for the smallest of problems just so they would be absolved from needing to be anyone to anyone, perhaps a welfare shake up will shake them out because they embarrass genuine claimants. They are the black sheep of our disability culture. We are as angry about these people as our able bodied friends. However at the moment what is happening is a shake up of welfare with no infrastructure in place to actually get those deemed fit for work ,with severe disability,a job! What welfare shake up seems to be doing is giving some civil servant (rarely a disabled person is employed to be a disability assessor with DWP or ATOS) a basic job of ticking a few boxes and stating if the assesee is capable of work or is a bag of spanners and needs to be stuck in a dark corner of society, not allowed out their houses and definitely no smiling or laughing allowed from them as this makes them look too happy and healthy! Now all this is fair enough, after all the assessor is mearly doing a job,but with no "best practice" in situ in order to support organisations, companies or the individual employer in how to support a disabled person in employment, all the welfare shake up will do is cease benefits in genuinely very ill people leaving the vulnrable up poo creak without a paddle. It is putting every physically disabled or mentally ill person or their carers, in a position of having to appeal, costing tax payers thousands and appeal is usually won because the initial assessment is so flawed. The alternative is leaving individuals unable to get a job because in the UK jobs are scarce right now and whether we accept it or not, if you put a well twenty five year old beside a twenty eight year old requiring accessible buildings, disabled parking space, personal carer for personal help in the loo or feeding, plus a need for regular surgery, chemo appointments, dialysis twice a week etc up for one job, who really is likely to be given the job in this economic climate?

 

We would love to say oh no the disabled person would get a job but one of our Paralympic gold medalists has been reported saying he got a 2:1 in sports education in 2004 and has applied for hundreds of jobs and only got four interviews and no job offers!Can we really honestly say the UK is really actively supporting, or ready to support employing those with major "special needs"? Indeed many of our athletes are very concerned that the welfare support they receive to meet extra costs of living with their disability, will be withdrawn or cut and they will find themselves, come the next Paralympic games, unable to compete because the very money that helped them get an accessible taxi or their own adapted car to get to training, will no longer be there, this is a sad state of affairs as we say goodbye to a tremendous exhibition of all sports people's determination to try and be the best.

 

So here we are, the closing ceremony, disabled sports people, given a chance, given the right support tailored to their needs, given the time, the patience, the motivation, the determination both from organisation and individual,the accessibility, will often work and work hard. Whilst public transport is still inaccessible, whilst work has to take place in an office rather than at home via Skype, voice dictation (needed to be done in a quiet room useless in an office), emails then work for those who need personal care in a day or extensive medical intervention will NEVER be able to work. It really is as simple as that, until we change the way work works then the welfare shuffle is a very expensive disaster for the tax payers, not one that I think is fair on anyone, disabled or able bodied.

 

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Books,books,glorious books!

Ever since my son arrived in this world he has been exposed to books, from those first black and white pattern baby first books, right up to "Pants" by Nick Sharatt.

 

Brilliant black and white rag book for a first born baby, simple white on black background picture of mummy, daddy and baby on each page, simple picture with word underneath, heck may as well get started in one of the best activities out! From www.amazon.co.uk

 

If there is one fun activity that is easy for mummy and him to do it is reading and chatting, I read to him and then he attempts to read it to me ,totally his own will.

 

In fact he and I are so interested in reading, books and chatting we are embarking in some research by a Language acquisition researcher for the university of Liverpool, Ben Aldridge, who is writing a book on "Small talk-Understanding your child's language development (and how you can help)". I have to agree with Nigel Latta, author of Politically Incorrect parenting, when on discussing baby sign language his response is "are you kidding me? Sign language for babies? What on earth could a small incontinent person who has never been anywhere, done anything of consequence, have to say that could be of any possible interest?". I see little point in learning Baby sign language at all unless you or a child is actually deaf. If we have the power of speech, verbal and non verbal gestures then why not focus on teaching that. Fortunately The Small Talk programme is all for talking! My only time I dabbled in baby sign language is when I thought it might be a useful thing to learn for the long term in communication as I myself have British Sign language qualifications. However my son decided he would just say "Apple" rather than mucking about with unnecessary energy required in signing!

 

I will let you know of our antics, fun and games in this very interesting research.

 

In the mean time the Ladybird Peter and Jane reading scheme books are out for tomorrow, my mother taught my siblings and I to read on this scheme and it still seems a timeless system to me, I can not abide the Phonetic reading system, probably because I just do not understand the science behind it being easier for a child to understand the word "apple" by phonetically pronouncing every letter of the word and the using of some ridiculous gesture that seems to go alongside with different letters in the phonetic programme. Perhaps Mr Aldridge will explain to me how this system is better than simply just route learning and perceiving words through regular exposure and use of a word in different contexts.

 

Christopher has a three tiered bookcase loaded with books, roll on the Kindle for children because it is ridiculous the amount of books lying around his bedroom by mid day, a total hazard for me on crutches! Here is a list of his favourites past and present, they are some you might want to check out in a library for free or very cheaply online!

 

Nick Sharatt has to be one of the best illustrators for children's books and the stories are just as great as the bold pictures, simple, rhyming stories. Pants is available in many good bookshops such as Amazon.co.uk

 

 

 

Just a fantastic book of child with a pet, loveable simple illustrations showing a little boy and his pet penguin initially not getting on, penguin ignores him despite the boys best attempts to get a rise from the bird, all turns out well in the end. Fun book for child and adult to read, not too long either! My sons top ten in his books. From www.walker.co.uk

 

 

 

 

Another beautifully illustrated simple book about a bored lazy shark who can't get into helping the other fish garden, at the end he gets left out for being lazy but he turns it around for happy times at the end. Short easy read for young toddlers who don't want "War and piece" bed time stories. From www.amazon.co.uk

 

Both my sisters son and ours loves this story. The fantastic illustrations followed by a great poem story just make for a great combination along with a story of emotions. From www.walker.co.uk

 

 

I found this book lurking in a dark corner of Sainsburys supermarket, a really lovely book, similar to Topsy and Tim books from days of yor only simpler and better illustrated and more updated. Great quick read for bed time. From Amazon.co.uk

 

Such a great book, brilliant bold illustrations, a fantastic story about a spider desperate to be a family pet, sparkly glitter everywhere. Just a great book to read to a child and my son just giggles and giggles when I shout "arrrrrrrrr spider",oddly cries when daddy says "arrrr spider" like a pirate! From www.littleonebooks.com.

 

Every toddler seems to get to a stage where lift the flap books are a must have feature of a book, this book has lots of them! A nice simple, old fashioned story line of a little boy going in search around his grandmas farm, for eggs. Is there any child on the planet who hasn't loved Rod Campbell books? From www.waterstones.com

 

For a baby up to one year old in age, very simple big pictures of cartoon bears with different textures to touch, this book is one of a huge series from "That's not my tractor" through to "That's not my puppy". Great simple book to read to a young baby but by the age of nineteen months the books are a bit simple. From amazon.com

Great textures book and great simple,bright bold images of vehicles with touch and feel areas on each. A fantastic book, each image of a vehicle has its word written simply in bold black writing underneath. My son still pulls this book out to look through it. From amazon.co.uk

 

Final must buy book for boy or a girl, with a little lady bird, sometimes microscopic, to find on each page, a lot of gorgeous illustrations and a fantastic poem you really can not go wrong with this book. From amazon.co.uk

 

I have to say once a child gets crawling the disabled parents job gets a lot tougher, however reading is constantly loved by a little one and gives you time to stay still for a good few minuets and read to your child. We read about fifteen books a day because trying to keep small man out of mischief is tricky when immobile and the more books we can ballance on the bed to keep him entertained, the better, sometimes the bed looks like a game of Jenga! I thank god for the library or we would be broke!!!!

 

Our son enjoying looking at a few books!

 

 

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Goodbye babyhood.

I have just come from bum shuffling on the floor in an attempt to sort out Christopher's clothes, for some reason I felt rather teary doing so, part of it may have been carpet burn! Whilst sorting out a pile of garments for family and friends, a pile of clothes that are great for other disabled parents to use and stuff just bin worthy, I looked at each item and felt rather sad that A) my little man is growing up fast and B) I won't get another chance. I won't have another child and it all seems so ....final. I dont think I am alone in feeling this, surely other women share my feelings?

Me with my son when he was a week old. Ahhh happy days, still time to look to his and our future.

 

So this is it, bye bye 12-18 month old clothes, hello 18-24 months for a brief moment and then farewell baby stage. For once ,in the total time I have had my son ,I am breaking a rule of my blog and am determined to purchase new , gorgeous outfits and endure ridiculous poppers ,adding an extra ten minuets onto changing my son just because I want to have an outfit in our memory box that isn't a zip sleep suit or Pre worn and worked popper baby clothes. As soon as I am allowed to move a bit with my Volvo boot, I am going shopping!

 

Since being very young, I have been able to convert negative feelings into positive, I think this is something children with disabilities learn to do very quickly in order to live and enjoy life with what they were given. You rarely see a miserable disabled child! So rather than getting down I think how lucky I am to have had a child at all , I feel so blessed. There are many women out there who are unable to have children whatever the reason.

 

However, whilst I may feel sad the baby stage is slowly going I am looking hopeful to the future and as my child gets more physically able there will be so much more he and I can enjoy together. Not to mention the more able my son gets the less our joints will be put under dangerous levels of strain.

 

Being an able bodied or physically disabled parent is a hard road but its an extra winding road when you have mobility restrictions. Parenting is a journey that is rewarding, happy and enjoyable but it takes a determined person to do it. There are no lie ins, no taking time out to pace or rest when you have a little ones needs to attend to, no taking a lot of Tramadol to get over pain because the likelyhood is you need your wits about you and not to feel like you are on an LSD trip! Operations are no longer something you can have every year to patch up, unless it suits the little person and a baby sitter. You can not walk with sticks when trying to push a buggy. Balancing a child on your lap whilst driving a mobility scooter is dangerous,take it from me and I'll say no more on this, just don't do it! Getting around is either via walking ,using the buggy as a walking frame and dealing with the pain when your child goes to bed at night,or drive! You can not be afraid about damage to joints when picking up your child, just do it, the time to worry about getting patched up comes after the child's need has been met. My son fell over and hit his head on a book shelf, I literally threw myself on the floor to check he was ok, my shoulder crunched,son had a cuddle and got on with pulling books down and now roll on mummys shoulder replacement..oops... but it had to be done!

 

I believe if anyone can master parenthood, disabled or able bodied,and still enjoy life with their child, have time for cuddles and entertaining a child then I believe a black belt in parenting is in order!

 

Anyone can be a great parent but it is like martial arts, a lot of it is about the power of the mind and sheer will to be the best we can for our children. Isn't this really how life is for every one, parents or not? We can all sit and mope and get down about aspects of our lives but most of us have to re appraise our situation at some stage, adapt and get on. Maybe this is what makes us all human :)

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Dedication to my husband.

Hubby feeding our son when he was five weeks old.

I am celebrating him today because tomorrow is our wedding anniversary, we will have been married for three years.

 

My husband has Psoriatic arthritis in nearly every place of his body and where bones are not affected he has psoriatic rash. If he isn't in a lot of pain he is itchy. He got this illness aged twenty. It is different to my form of arthritis, whilst it is the immune system attacking itself,eating at joints over night,similar to Juvenile arthritis, his body destroys the joint then attempts to rebuild it but kind of gets the instructions wrong! Marks arthritis would be hopeless at following IKEA instructions! It will try to re grow a knee joint for example but instead of growing a round bone it will stick a huge pole of bone on it, so he has odd lumps on joints which restricts movement.

 

So he stands a lovely six foot tall, he is not an average sized forty year old, slim thanks to not drinking I suspect but also because our illnesses eat muscles as well, if his body re grew muscles I would be sleeping with Popeye!

 

His ankles looks like a Christmas star, all pointy. Nearly every day a bit of bone spur breaks, often the new bone growth will fuse a joint which is great in that breaking can't occur but it means that the once moveable joint becomes static and very restricted in movement which makes tasks such as driving where you need ankle movement, quite tough.

 

However my husband is a great man. He is a great father and my best friend. Over the last three months when I have been totally wheelchair bound, he has single handedly parented our son and been my only carer. If he isn't helping me dress and washed, he is getting our son dressed.If he isn't getting me my lunch, he is getting our sons lunch, if he isn't there cheering me up,he is there making our son laugh. Despite extreme pain he stands up, gets out of bed and faces the whole day again.I hear his bone spikes snap ,he rarely moans, I hear him struggle to undo something, swearing at packaging and ten minuets later managed to undo a milk carton.I hear him drop cereal all over the floor ,due to his poor hand grip, followed by a hopeful Labrador getting up to see if the commotion involves food!

 

He gets the washing done, lifting a basket of clothes shoots pain in his shoulders, he sighs and carries on. I entertain our son but I can not do much at the moment apart from read and play on the bed and of course our son is crawling so he can not leave us for a moment whilst our little man is up.He hardly sits down all day, he has just brought me a cup of tea,vacuumed, fed our son,made me lunch, put washing on, changed the bed sheets, changed our son,came and sat with us and was our small mans climbing frame,put our son to bed and finally he can rest for an hour, my only thought reading all this back is blooming heck we maybe should demand a carer comes in to help us but he and I feel too proud to have that really.

 

When Mark sits down he produces amazing art work in the hope some art company might see him.Some of these pieces take weeks due to him having to paint awkwardly but he perseveres and ....well....the pictures speak for themselves:

Mark won Student of the year for an art diploma he took a while ago.

 

A sixties piece done for our sixties home hallway.

Work stolen from a New York Gallery Surreal exhibition, any one sees it let us know!

My favourite picture "Mop" by Mark Jephcott

If you stand still for too long in our house you get drawn on!

 

In an hour he will get up and start the afternoon chores, he will change my son, get sons tea, get our tea, help me shower, help me dress, dress son for bed, I will entertain son so he can sit watching but at least he can rest,he will put our son to bed,make cups of tea,unload dishwasher,re load it, tidy up after our son, get more washing out the dryer. He will then come be with me and I don't think he as any idea how proud I am of him. His get up and go, his determination to keep trying in his art and as a physically ill man. He never quits. He never says he can not do something (not publicly anyway), he can't drive anymore because it is getting to a stage where he doesn't feel safe now as his feet cramp and go numb etc. He refuses to sit in a wheelchair despite doctors suggesting he does. I love him more than the day we got married, he is a real man, no matter how tough the elements are he strives to get through each day and find something good at the end of it. Mark Jephcott thank you for coming into my life and being my best friend and giving me a lovely child and being fantastic. Happy anniversary darling x

My attempt at art, ok no one said I was the artist in the family!

 

 

Marks art work and poems can be found in a zillion places but he writes a blog called Crappiest blog ever, go to http://crappiestblogever.blogspot.co.uk/

 

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Paralympic games, disabled people rejoice,our time to shine!

"Let the games begin!".

 

I am so proud to be a disabled person in the UK as of this evening! London and Bath University have excelled themselves for creating physically disabled friendly ,utopia ,athletic villages.London transport departments have tried their best with city transport provision for the wheelchair bound fellows amongst us getting to and from the stadium.If you want to go anywhere else in the UK good luck because the rest of our transport sucks!

 

For the last two years ,in the UK, a disabled person,whether with mental illness or physical difficulties, have felt like a Jew in Nazi Germany. The rise of poorly researched anti disabled journalism has made many genuinely disabled people feel victimised,classed as Scroungers, not crippled enough to warrant help, too crippled to be shown in public, all cheating the tax payer whether they work or not, if you are disabled then you should be a vegetable in a wheelchair, dribbling and unable to speak, stuck in a special institution. If you smile, put on make up, look pretty,can articulate , persevere through life with as few crutches or aids as possible then you do not match the stereotyped view of a genuine disabled person and therefore some simple public fellows feel you are faking it. The Sun, and the god awful BBC Saints and Scroungers programme to name but a few examples of horrendous journalism,have given rise to this new culture of hatred towards anyone who is "different". However the tide is turning,mainly due to the Paralympics, whilst an international audience watch the UK, the UK has had to pull itself together, journalists anxious to not miss a trick for profits are suddenly holding disabled people up as heroes, or as the BBC like to patronisingly call us "the disabled saints"!

 

My pride overflows for all of our UK athletes, able bodied or not, the work they put into being the best is just outstanding and puts joe blogs who moans about his work, in the NHS, bank etc to total shame! These guys get up at 4am and train till 7am ,go about their day, then get back to training from 6pm and do not stop till 9pm! Add a physical disability to that, pain requiring huge morphine doses just to train that day, a struggle to time manage it all especially as some daily living tasks, that take a well person five minuets to do ,takes a physically disabled person twice that amount if not four times. Our Para athletes are indeed an inspiration to all, not just to other disabled people. However are they heros?

 

No, there is no disabled person who is a hero, anyone who wakes up tomorrow having had a stroke, shooting pains in every limb, collapses to the floor as they can not feel their legs, these are things that happen suddenly to healthy people, over night, no warning, many illnesses and disabilities just arrive at your door! My husband knows of a once very healthy friend, massively sporty, adventurous, who didn't realise he carried a silent bacteria around his spinal fluid, one day this man bent over to pick something up and bang, collapsed, is now paralysed thanks to this bug just hitting in his spinal cord! These newly effected people have a choice to make, accept they will never be pain free or able to walk unaided or normally ever again, quit life,never see or do anything or effect anyone's life for the better ever again. The alternative is to choose to live as full a life as possible, find a different way of doing something,adapt to your painful body, persevere through some of the pain and try your hardest.

Every one on this planet already does their best but as a disabled person you need to be dedicated to trying, you can not afford to have days of quitting or basically you end up in a very deep spiral of depression and end up giving up.

Day in,day out, the athletes that live with creaky,damaged,bendy or numb bodies live with determination to get on every day and not just in the public arena of the 2012 games. Ahhhh I feel the pride in me now.

 

There are always able bodied and disabled people who moan, feel entitled to more and more, feel that they have no need to try for themselves and yet expect every one else to give their all to them.Well all I can say is I hope the games will help them realise there is another way.

The Para games will be redefining the public opinion of a disabled person so lets join our athletes and support this! Disabled parents, we are like the Para athletes in so many ways, heck just by having a baby redefines family opinion let alone public opinion of me, me who has been on chemo, me who had had operations every year of my life since I was eight years old, me who walks funnily and slowly, gets stared at by adults and kids. I know there are thousands of others out there like me, I am not novel nor am I a person to put on a pedestal, I made my choice, I pursue it, I get on with it and I am a Paramummy!

DisABLEd Positive Parent Icon by Mark Jephcott

 

 



Paramummies weight lift- lugging a baby around with useless arms or using our whole bodies to lift our child requires dedication, practice, early morning training and late night training. Buggy lifting, washing lifting.

 

Para mummies constantly move no matter what the injury- we all probably cover miles in our house through out a day whether in a wheelchair or on foot, or crawling just to keep check on the little one!

Did I mention my assistant dog who is a mega weight lifter as she helps me on and off the floor! Go go Para dog aka "Canine Partners" dog

 

Para mummies race against time- changing a nappy takes us three times as long as an able bodied person due to limb restriction, having to use our mouths to undo and do up nappies etc so the pressure is on when the child is an impatient toddler and believe you me toddlers are tough trainers! You feel like you have won gold if you manage to change a nappy in under ten mins, child looks almost shocked at your great time!

 

Para mummies keep motivated- no time to get down, mope about pain, mope about what others can do and we can't, we just have to persevere with our weird but effective ways of parenting.

 

Para mummies are gymnasts! That's right, you try standing on one muscle wasted leg,bad leg out behind you, leaning on one arm that is deformed, whilst changing a nappy with one hand, that is Yoga baby!

 

Para mummies are strong- we are human, we have days where we feel we could have been better parents, that we could have handled food being thrown around a room with more dignity, we would love to go to able bodied parent and child groups and sit on a floor with everyone, then we feel sorry for our little ones for not having the healthiest mummy who can not take a toddler out regularly. We feel emotional, disappointed in ourselves but IT LASTS FOR HALF AN HOUR NOT A WHOLE DAY! We find what we are good at, reading to our child,painting with our child and we think actually we give great quality time,may not be action packed, may not be quickly done but we are doing our best and keep doing it!

 

So here is to the lovely public, the differently able athletes on stage tonight and over the next few weeks and to all other disabled people who are great Psychologists, lawyers, geneticists, artists,engineers,parents,teachers etc all who do their best, strive to be the best at what they do and genuinely are a positive thing in the great UK.

A brilliant piece drawn my my husband who has severe arthritis in his hands but he keeps on drawing, now that is passion for his art for you! By Mark Jephcott

To all disabled parents lets remember we are "Para parents",lets not feel ashamed of who we are but take inspiration to keep going from the 2012 Paralympic games and our fabulous para athletes :) x

 

 

 

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