Thursday, 29 December 2011

A year as a creaky parent!

Well tomorrow my son will be one years old.

All of my life I have studied for my education much of the time in hospital.

I graduated as a Psychologist, I dated when I thought as a child no one would want to date me.
I married my lovely and talented graphic artist husband in 2009.
I got a job somehow working with a 2012 scheme, never thought I would get such a job as that!
Managed to purchase this 1960s home, but my most greatest achievement is my son!

Being an ill parent has come with huge challenges, both my husband and I have youth arthritis which attacks organs as well as joints. However there is not one challenge we have not over come from not being able to do popper clothes and either finding other garments like zip sleepsuits, locating Velcro fastening vests or finding a buggy that is not awful to unfold with very weak hands etc yes ok there are joints that need replacing but we have been great parents, smiling through it and singing, laughing and cuddling and loads of reading to our son.

Still can not find a great solution for a accessible car seat, really don't think one exists! If the release strap belt button isn't difficult, it will come with a carry bar which acts as a roll bar that has stupid buttons either side of the seat to fold bar out of the way to get child in and out! However for the first year of a child's life they are not aware enough to need social groups so we haven't been able to go out much but he is older now and will be trying the maxi axis soon to see if we can access this easier. The axis swivels to face the car door entrance which should make getting our chap in and out easier. I will let you know the realities.

Remap- an organisation that takes shop brought baby equipment and adapts it to be creaky parent, user friendly have been fantastic. Make this your first port of call parents to be.

Sleep zip suits available largely in winter at Sainsburys, Next and lots of other high street stores, are very worth while grabbing for easy day wear, for those with limited hand movement. Also leggings with feet and envelope opening neck tops are also so easy to put on. Trousers with thin elastic tops are good if you have poor grip, dungarees with easy button holes are also easy.

Above all it has been one of the happiest and greatest moments, a child is full of joy, is the most amazing gift anyone can have. Every day there are moments of joy. I am privileged to be a huge part of my sons life. I would go to the ends of the earth for him, I do need an ankle and two knee replacements next year because of the picking my son up and getting on the floor to play with him but I will do it over and over to join him in laughter and learning.

I would say, to any disabled person, you can be an excellent parent, nothing will be a huge problem, there are solutions to every difficulty. Have faith in yourself, you will spend lots of time with your child because you can't chase social groups for the first year, your child will learn to be gentle and patient and probably read War and Peace by the time they start school due to reading being an easy and fun activity to do with your child.


Happy new year to all parents and children.

Saturday, 17 December 2011

I do not like Green Eggs and ham

.....I do not like them Sam I am !

Ahh good old Dr Suess seems to be getting us through the mornings, our son loves these books.

Our mornings are consisting of a 30 min battle to change son for the day, feed and then play time including reading which I have to admit I love. I enjoy a little cuddle with Christopher and reading a good book to him even if the ending of "Green Eggs and Ham" is now somewhat predictable!

It is getting very cold here in the UK, probably nothing like other places but still it is chilly. So as there is also mega recession going on, most citizens can not afford to have heating on 24 7 and we are of no exception, it makes me smile that just down the road from us live my 60 plus year old, healthy, parents in their big house with their "footballers wives" electronic gates and they enjoy a winter fuel allowance every winter which means they wonder around in Hawaiian shirts with heating and CO2 blasting out of their property! Mean while their arthritic son in law and daughter don't get any such thing and have to cope with heating being on for an hour in the morning and two hours in the evenings.

As a result of having to watch heating and electricity bills we have massively limited tv viewing which is no bad thing for our child any way, we also and more importantly, tried out popper cotton sleepsuits to go under Christopher's zip suits in an attempt to make sure he is as warm as is possible.

Don't bother! If your hands lack in dexterity these cotton popper all in one things are pointless and difficult no matter where you buy them from. The child ends up shivering whilst you are changing a nappy and then trying to do up the 8 poppers is not worth the struggle at all. Instead we have gone to various web sites and High street stores such as M&S and purchased "leggings with feet" in two sizes, 9-12 months and 12-18 months and got some long sleeve vests second hand from ebay as the poppers between the crotch area have been worked by someone  else so they are very easy to do up and undo, an envelope long neck t shirt would probably work just as well if poppers are a complete no no. Then we put the zip fleece suit on him, he has a snowman one from Sainsbury's with a brilliant full length zip on it and a Thomas the Tank Engine one from E-bay,don't be tempted to buy zip suits with a zip that only goes half way down as getting a babies legs into these is difficult. I prefer zips that go from top to crotch area.

Apart from that our tree is up, house decorated for Christmas, smelling of Christmas thanks to various scented candles and we are all really excited. The only thing I want to find five mins to do today is to decorate the ginger bread house but that is very much dependent on little man giving me a moment!

Well back to it I go, I expect he is already running the dog over in his walker!

x

Monday, 5 December 2011

Parents that hurt, with a busy 11 month old!

It has been a while since I have blogged. Part of having the immune form of arthritis as opposed to the older persons type is you never know what mischief is going to happen whilst you sleep at night. It can be any thing from attacking joints to choosing to muck about with my kidneys. At the moment both is happening to me, what is not yet on the waiting list to be removed,will be at some stage. No idea what to do about the kidney, time for Mr Cranberry juice to make his cameo appearance of the year along with anti biotics.

All that aside life has to go on, as any parent knows, you can not afford to be ill when you have children!

As Christopher, our 11 month old son, has grown up some things have become easier but other things become a nightmare. Be warned parents to be, never think it will be easier when your child can sit up, crawl, it isn't so enjoy the peace of a first born baby  because by 5 months things get a little more crazy.

As ill parents, we know we are going to have to enforce a lot more rules on our child than perhaps well parents would need to. We are already having to use stern voices during nappy change time, we are happy nearly all the time so when we use stern sounds he knows we mean business and calms down a bit. If we didn't use this method we would have a child stronger and more flexible than us, rolling off the changing matt, kicking his legs into our joints and there would be general exhaustion in us so we then could not give him nice times as our limited energy would be spent on just the daily maintenance of a child.

baby_angry2.gif
This is very like my son! From Hasslefreeclipart.com

Feeding time was getting difficult.We could not have him catapulting food around the room as is his want, as a Psychologist I know there is a need for children to learn about texture of food and play with it a bit but we want him to eat too, plus my assistant dog is getting huge because she is getting all his thrown food to hoover up! We struggled to pull the spoon off him, my hands have not grown any bigger than his hands and my husbands hands don't flex, so this is a major battle. We have to use our voices. We have to be tough and equally distracting. We try to make feeding fun by pretending the spoon is a car, we sing songs and if he still grabs the spoon we say "no" with a big glare on our faces. It makes him upset but he has started to get the message and leaves the  spoon alone. Our other tactic is to have finger food on his tray such as bits of toast ,which he controls, and in between him stuffing the bread in his mouth we can sly in some of the good stuff. It seems to work at 11 months, he may cotton on to all these methods soon!

He adores reading time. He seems to be enjoying "Green Eggs and Ham" by Dr Seuss, this seems a bit of an older child book to me but I think babies enjoy rhythm.



He loves songs, he will watch any thing with music in it so he currently watches retro Christmas music videos.His father has recently purchased a Ukulele, so my husband plays and son listens and tries to clap along.

 "Baby Einstein" DVDs are a godsend to any creaky parents, it keeps your little darling transfixed for a good half hour whilst you sit down and have a cup of tea and painkillers.

My husband is an artist so hence why we like this particular dvd!The DVDs are available all over and I am sure competitively priced since thanks to some idiots who threatened court action as the dvds were not making their children smarter, come on people, get some common sense, its tv watching not doing a cryptic crossword! Makes for a blooming good half hour rest though for any parent.

Finally it is the season to be jolly. Our tree will go up soon, we have Chris tingle Church service coming up which I love and I have hand made a lovely Christmas stocking advent calender so when he is older every sock will be filled with a different Christmas related gentle activity, right down to making those gaudy paper chains children love!

The best thing to combat pain is to ignore it, fill your mind with your child, how lucky to have a child and throw yourself into Christmassy feel, fun and online shopping! Tests have proven that you can fool your brain into thinking you are well or in less pain if you stop dwelling on the pain. So off I go to stick Christmas carols on and get wrapping some presents.

x

Tuesday, 15 November 2011

How do I feed a baby with better grip than me!?

Ok ok so I am very naughty and have not blogged for a few days. Life really is a bit bonkers at the moment.

Both my husband and I have major joint breakdown. We are swallowing as much pain killer as is possible in order to keep functioning physically but not so much that we mentally are zonked out! I think we are both in line for ankle and knee replacements and so we are playing lottery as to whose name is drawn out of the NHS hat first for a joint upgrade.

In the mean time our son gets more and more determined, I love it but at the same time I find myself having to make quick decisions made in the blink of an eye and also am constantly having to make sure I stay at least five steps ahead of his game, I am sure this is something any parent can identify with. However what does one do when ones 10 month old has a stronger grip than you and there is a battle of who gets to hold the spoon to feed child?

Day one of Christopher's new found grip ability we had plastic spoons all over our dining room, I tried to grab the spoon back and couldn't get him to release it so I went to the cutlery drawer and got another, he saw a new spoon and dropped old one on floor and then grabbed the new one and so the process went on. My assistant "Canine Partner" dog was on over time work, picking spoons up left right and centre,bringing them to me with a huge wag at each spoon presented,meanwhile Christopher tried to grab her tail at the same time. Thank goodness for a dishwasher or I would have had an awful lot of washing up to do at the end of meal time.

So husband and I went to that trusty mental drawing board in our head. His first thought was that we need to be tougher, giving him a spoon to play with whilst using our own one to shovel food into child very quickly. However we ended up with about 16 spoons on the floor and a very busy dog. So back to re thinking, a hole is going to be drilled into the top of one plastic spoon and then string thread through the hole. The string would be long enough to be tied to the side to the high chair but also enough for our son to be able to play with spoon, bring it to his mouth etc. Meanwhile we use our own spoon to get food down him.

Dad is over tomorrow so he can get drilling a spoon and we'll try this hole in spoon system out and let you know if it is a solution. In the meantime, I gave our little cherub some finger food toast,this was fantastic, kept him very busy and very happy, he loves being able to manage things himself and I so understand how he feels.

Something I find very difficult and heart wrenching,is not to give him too much help with getting things in his close vicinity. As a child who has struggled all my life to do things independently and not seem "different" I feel for any child when they are trying to reach something or do something and can't quite manage to. I have felt that a lot of my life but I have had to learn how I might do something differently as my family have always encouraged me to try to do something on my own. I often find myself helping Christopher get something that he is trying desperately to get that isn't far from his reach. My husband tells me off as he rightly says that our son won't learn how to move, reach etc if I keep passing what he wants to him. I don't know how to switch this feeling I have off, I wish I could, I just have been that child for too many years of my life that has tried to get things, if I dropped things on the floor I had to learn to pick things up with my feet, or use a coat hanger, that was until Yasmin, my assistant dog came along. Wish I had Yasmin when I was a child but equally maybe I would have a house bulging with NHS aids every where and be a very different person to who I am today.

I'm hoping Yasmin doesn't get too helpful for Christopher, I fear she may, she already picks up toys and wonders if she should give them to me or him!

Sunday, 6 November 2011

Cracking up here!

I could sum our whole week up in two words, hectic and painful!

What a miserable way to start a blog, especially as I have been naughty and not blogged every day. The reality of the situation is that I don't have time. I know every parent will understand that.

Ok so here is a situation and explanation of lack of time, I am trying to open up a can of rice pudding for my son. That takes me five mins to be able to bend to the cupboard where the can is located, pick the thing up, drop it twice, assistant dog has to pick it up and on the second drop thinks I am mucking about! Then I go to the electric can opener (usually a fantastic invention) only to find my can opener has decided to shred cans rather than open them.I shout at can opener, my son meanwhile is moaning loudly that he is starvin Marvin and all the time the can opener keeps on shredding! Still after another five mins I manage to get it to do its proper job and put rice pudding into a bowl which is also stored at a low level that takes another two mins to bend down to. Finally it goes into the Microwave for a lovely speedy 30 seconds and after 10 mins I have something to feed the baby with! Poor little guy, he is learning patience though! I am learning to say BERTY instead of boll£"ks so I guess it is a win win situation. Except the can opener has lost its battle because I am throwing it out and getting a new one tomorrow. If it can't do its job it is sacked,lots of can openers wanting employment out there!

My "Canine Partner" dog however is munching her way through many a log bone as she is on call all day, picking up toys that my little boy throws on the floor, tackling heavy tins on the floor, cleaning up our wood floor in our dining room after my son has eaten which saves a world of hassle with mobs and floor cleaner. Don't worry, when he is crawling the floor will get a big steam session on it!

Which brings me onto my next cunning plan in independent parenting. A X5 Mop. These look good, haven't dared buy one yet, my father ,sat with his big pension keeps asking me to get one so he can see if it is worthy of buying! No father you get one, no daughter you get one conversations can while away a happy 20 mins. So it looks like it is up to us to purchase one. We have an adapted bathroom, my brother designed it for me and did a fantastic job. He then got the DFG to install it and inspected their work and insisted on them re-doing something if it wasn't up to scratch,its funny to watch your brother all grown up as a Chartered Surveyor, its strange to think of the boy who I played lego with for hours is now designing and telling people off when they don't get it right! Mind you he was always very precious about his Technic lego, I was always told off for using it so he had practice! So now our bathroom has a huge glass pane dividing our walk in shower area to our bath and toilet giving a huge floor space and a feeling of light and airiness. But most of all I can just toddle into the shower either by walking or by chair, no step to take 15 mins to try and do. Boy do my husband and I need to shower at the end of every day and wash our pain away a bit. However both my husband and I take immune system erasing medication and so we have to have a spotless home! Any bug or infection lands us in hospital and so I can no longer scrub a shower floor as I can not stand for long at all now my ankle has collapsed so bring on Mr X5 mop!

Well apart from that it has been mortgage sorting, bill paying, flash card reading, cuddles, singing, playing with every toy,blooming "Mr Maker", "Small Potatoes", "Driver Dan Story time" on cebeebies, bring on Father Christmas please! Am bored of playing with the same toys and I want to throw the television out of the window!

TU at Sainsbury's have a sale so I have been stocking up on easy zip sleepsuits, fantastic items of clothing for disabled parents! Watch out for Tescos clubcard exchange though as they have zip sleepsuits too so please stock up. Before I had my son I thought I was going to have lots of smart cord trousers and nice jumpers for day wear and sleepsuits would not be worn in the day at all. Now I have the reality of being a parent I can see if you are not going any where smart then keeping clothes as hassle free and pain free for yourself as a parent whilst keeping your little one warm is the best solution. Been to the Library,fantastic, I look forward to getting Christopher new books to read. We live in the city so we have watched fantastic firework displays for free and in the warm! We got some token indoor sparklers to light for our son to see. He was overwhelmed, NOT!

It sounds all hum drum really but it is the reality of having a little one. Equally I miss him so much when he goes to bed, being a parent is such a rollercoaster of emotions!

Hope you had a lovely bonfire night or if you are from else where on the planet I hope you had a lovely weekend x

Sunday, 30 October 2011

These boots are made for walking.

Oh if only this was Christopher's motto.

We really need to encourage our son to get weight bearing, walking would be preferential. However I know many parents say "don't wish your sons babyhood away". I do get that but at the same time my knees need re replacing, as does my left ankle and as does both my shoulders through carrying him both in pregnancy and now. I am worried that my husbands knees and hips are also going and I fear for my son having to spend a lot of the first three years of his life visiting one or the other of his parents in hospital.

So I mulled it all over and decided I can't keep putting surgery off, I have to go and get some of these joints taken out and fantastic plastic put in and perhaps it is better to do that whilst he will have no memory of it,rather than it upset him more when his memory is working and he has to deal with one of us leaving for a bit.

I do really need Christopher to start taking some steps soon though. So hence the boot camp of exercise in this household.

In the morning it is door frame bouncer time for 20 mins, he is actually moving well in it now and enjoys it where as when he was 6 months he kind of hung there like a miserable puppet.

In the afternoon it is baby walker time, we have a great walker from Babies R Us, really recommend it, the seat allows your child to almost be in a standing position. The toys attached to the tray are bright and fun too. Here is a picture of him in the walker with my assistant dog, excuse the expressions on both him and the dog, clearly story time is requiring a little more oooomph.




Babylo Bizzy Bee Baby Walker in Polka
Babylo Bizzy Bee walker from Babies R Us for £29.99
In the evening, before bed time it is floor time and I guess you will have seen my "I got on that thing called floor" blog so you will know all the fun and games of that.

I have no more ideas for how to get our son to weight bear. I don't want to wish away his baby years. Of course I don't, he will be my only child because pregnancy and carrying him now has taken a huge toll on my joints and arthritis as a whole. I wouldn't change it for the world and there are many arthritic women out there who would make a choice to have more than one child. Not only has it taken a toll on my arthritis but it has also been hard on my husbands joints, he, having had arthritis later in life, is more mobile than me, he has normal developed limbs and less deformation than I so he has to do a fair amount of the physical work. I can't see him suffering and neither can Christopher or I afford for him to end up very ill in hospital for weeks. My poor Canine Partner assistant dog would be working over time if he had to go away for a bit and I don't think the old girl would be amused!

Next will be potty training, I have to ask how do disabled parents deal with this!!!???? We went to IKEA and brought a cheap £1.99 pot, Christopher chose a lime green one, a fine choice, glad to see he has his fathers artistic eye. We got this pot because it was so cheap and if we can't find a way to get him on it then we can afford to bin it. I am looking into potty seats, they are a little higher of the ground. Again it will be up to poor Mark to deal with this as I just can not bend my knees or hips to get our son onto it.
L√ĄTTSAM Children's potty, green
Potty we brought from IKEA for £1.99 although pot looks high it isn't.
Mickey Mouse Comfi Trainer - Blue
Another alternative idea that he could go straight onto the toilet,which requires no bending to put him on but children are frightened of the toilet monster coming so I expect he won't take to it. £16.99 from mothercare.com

Mickey Mouse Potty Chair
Pot that sits higher off floor from Mothercare.com £16.99 does actually sit further off ground than normal pots.

I hope that Christopher will help out a bit and get himself onto it once he has been shown how. That would be the best solution really. 

Really there should be a degree in parenthood, honestly they have more daft degrees out there so I don't see why not! You have to think quickly, dynamically and apply it all in the space of very little time. 

Whilst sat waiting to see a man about an ankle, I read through some hospital pamphlets and there was one on "pregnancy and arthritis", there were a few helpful thoughts for during pregnancy but as soon as it got to the childcare bit it kind of gave up and said many arthritics have babies and they seem to manage. I am not kidding you, that was what it said, no how they manage, no tips except for "get family and friends to help". I bet MS and pregnancy, blindness and baby rearing etc etc are all similar. I can really see I need to get setting up the web site for AbleParenting!

Oh happy Halloween every one for tomorrow, Chris is sporting his Monster dungarees today in preparation for the Trick or Treaters coming over. x

Saturday, 29 October 2011

The story of the Little Red Hen.




Ladybird Favourite The Little Red Hen
Little Red Hen Ladybird book from worldwideshoppingmall
                                                                   

Is every one sitting comfortably, then I shall begin. Stick with me on this:

The little red hen is a story about a hen who finds a grain of wheat. She asks the other farmyard animals if they will volunteer to help her plant the grain. No animal steps forward to help her.

Then she keeps persevering with the other animals and asks them to help her water her wheat, harvest her wheat, no one helps and finally make the wheat into flour for bread and of course none of the other animals help.

Finally she makes a loaf of bread and asks the other animals who will help her eat it and  every one volunteers. However she tells them that as no one bothered to help her make the bread then they weren't going to get any and instead she turns to her chicks and gives it all to them.

My husband and I were talking about this story in the context of today's society. However today the story would need to be told from the animals point of view, little red hen would like help planting her wheat, cheeky git! Good luck Mr Cameron on your Big Society idea!

An old lady fell in the street ,yesterday, in Gloucester. She went flat onto her face,she was frightened and shaken and couldn't move. My husband waddled over to her as fast as creakiness would let him. Mean while healthy people, all nine of them, stood there,circling her,staring at her struggling. It was like watching animals,in fact my assistant dog wanted to help! It was a horrid scene. My husband, whose shoulders make him scream out in pain at 2am,tried to help her but couldn't manage,all the time others looked on at them both as freaks. Eventually another old gentleman came over and helped my husband get her up on her feet again. The crowd continued to stare,my husband called them all ignorant and left. Why was it the only people who would help her was a disabled man and an elderly man? Sure the dull Psychologist in me would waive the bystander apathy card, is that really an excuse though? Animals don't even act like that.

My main reason for this blog is to outreach to other disabled people. I am currently helping a uni student with his project to create stylish aids for the kitchen,I am doing this purely because volunteering to help him will not only keep his enthusiasm in the future to help design funky aids for my future use but also to help other young disabled people so they don't have to have ugly NHS rubbish cluttering up their home and making them look very "special needs". The chap went onto an arthritis forum to ask for help from arthritic people and only I responded. He e-mailed me,shocked at the lack of willingness of others to come forward and help suggest ideas or discuss difficulties within the kitchen. I really feel for him, it is so important that our youth are interested in design of aids to help us creaky people, we all know how embarrassing those NHS aids are and yet here is someone who has realised aids are awful and is wanting to improve the look and function of them. We can't sit back and do nothing, maybe people are embarrassed of discussing difficulties, I understand that but if it is for a greater good to help others and oneself in the future it is probably worth the awkwardness of admitting some tasks are difficult and that you hate your NHS black foam cutlery from your OT.

NHS style cutlery for those with poor dexterity.
AMGI09SET - Pummaroriella Posate, 2 sets of cutlery for pizza
Or these that work for those with poor grip and look nice! from Alessi

                                                                     
I write this blog to make change for disabled parents,parents to be and teenagers with disability, I write to say it is ok to be different, it isn't cool, special,it is just normal. You can manage without a house full of nasty aids, you can make subtle changes in life,look at high street equipment to care for yourself and a baby rather than spending thousands on something clinical that doesn't really meet your needs.I have a shoe horn that I use to shave my legs with,its hopeless as a shoe horn as I can't flex my hands or feet to use it,nice try though OT and at least it is useful. I stick shaving cream on the end of the shoe horn, rub shoe horn with cream down my leg, wash cream off the horn and then use it again to scrape the cream off! Hey presto, smooth legs,no "special" four foot aid or carer to do it, a long shoe horn I can hide from my friends in a drawer, can't do that with most aids or a carer!

Product Details
Extra long shoe horn is good for shaving legs if you have fixed, bent arms from amazon.co.uk

  I ask any one reading this to get involved with these uni students projects, be you well or disabled, it will be these guys that ultimately make things better for us all in the future. One of them may design easy to use and groovy looking baby equipment so no disabled parent need feel isolated because they can manage a car seat or a buggy.Maybe one of us might give it a go at being a "dragon", we would want to think others were behind us. If any of you are that way inclined count me in to help you. x

This chaps e-mail if you can help is:
chris chapman clchapman2008@hotmail.co.uk

Thursday, 27 October 2011

If you're happy and you know it clap your hands!

My son started doing this at the weekend after months of singing the song to him and demonstrating how to clap your hands as in my version, I can't turn my palms to clap normally so I clap the front of my hand with the other. Guess what, so does he! After observing other babies, I realise they know how to clap the "right" way and he claps the bonkers ways of his parents, bless him! Still he will learn the "normal way" which is far more sensible but not quite as funny.

So why have I not blogged for ages? Well because my husband and I are so exhausted we have been lining up for the sink to be sick in due to taking a lot of painkillers and other medication to get us through a busy time. I absolutely adore my friends, they keep us going but they also have no idea of how tired we get. The fact we have been up since 5am and with joints that are mostly broken,fractured, deformed and all needing urgent surgery, trying to smile for friends, make cups of tea, wash dishes and sort our child needs, driving every one every where, playing games with them and with our son etc etc. It does not register that perhaps this is exhausting stuff. I should think every parent feels exhaustion when juggling the art of entertaining friends who have no understanding of child rearing and who are expecting you to still be footloose and fancy free and all things to every one as well as being a parent. However we also have huge amounts of pain and mobility limitations to contend with, what takes one parent ,one minuet to do, such as changing their baby,takes us 10 mins,leaving us in pain and our poor son fed up from being mucked about with for so long. Every activity that is just a bit of time from a well parents day is hours from ours and a lot more taking of morphine and steroids to kill the exhaustion and pain for a little longer.

 I drove friends to Bristol and back again on Saturday to see a fab show "We will rock you". My husband drove on Monday to Bristol and back again because friends wanted us to all hang out and shop together, which was lovely and then on Tuesday I drove us to Bristol for my hospital appointment, then to IKEA in Bristol and then my husband drove us all back. Our son was perfect throughout it all, he never gets upset when we are out.When we went shopping on Monday he loved looking at every thing and even IKEA and Southmead Hospital held its individual fascinations for him.

I need my ankle replacing, they need to find a company prepared to design an ankle joint small enough for me, apparently joints come in standard sizes and they don't go as small as my paediatric size. However someone made me a perfect ankle for my right side and so I don't see why they can't just do the same for the left. So I am on the waiting list. I am dreading it not for myself, surgery is my culture, I have never known a life without it every year so it is no different to someone feeling annoyed they have a paper cut. I feel for my husband and my son. I hate being useless, I can not seriously sit in a plaster cast on my foot watching my ill husband care for my son alone so I shall be finding out a whole new set of "how to with baby" instructions to put on here. I shall not sit back and let him do it all, otherwise we will be having to sync diaries for each others required surgery and more concerning our son will end up spending too much time around hospitals, something I want my son to stay very firmly away from having had my childhood around the darn places.

I have previous knowledge of ankle replacements from the right ankle having been done, I can not use crutches during non weight bearing weeks as my shoulders and elbows will end up needing to be replaced if I put weight through them. So I am going to place a wheelchair upstairs and one downstairs so I can scoot around both parts of the house using my good leg to move me about.No reason why my son can't sit on my lap still and I am sure both he and I will adapt.

I know primarily I wanted this blog to help other disabled parents where a huge gap exists. However equally, unless disabled parents talk of the realities and make it normal to all then the gap will continue. Life is not awful, in fact life is very happy most of the time.Both the husband and I are in pain and we need day time naps like old biddies do, we stick our "Pain Pods" on, stick pain killers in our mouths,inject our Anti TNF medication and get on with our days, no more than brushing teeth is to every one, its a job that has to be sorted and not really talked about.

 I do get exhausted trying to come across as normal to every one outside of my family unit.However, equally, I love the fact my friends don't think of me as "poor sick Carrie". I like the fact they feel they can say "oh you boring old person for going to bed at 11pm". That is normal. I love the fact my son claps his hands the wrong way with a huge smile,feeling so proud he is clapping his hands and not giving a darn that he isn't doing it the "right" way or the same way as every one else.

So lets all take a leaf from the book of baby Christopher and clap our hands my weird way, feels good doing something different doesn't it :oD

x

Sunday, 23 October 2011

Speedy blog today.

My best blogs seem to be the ones done on the run, or the slow walk in my case!

Well the round up of our weekend has been a good one.

I was persuaded by my sister and my brother in laws sister to purchase a snowman zip suit from Saninsbury's for our son to wear on Christmas day, I'm not sure I would feel full of good will to all if I was made to dress as a snowman at Christmas but heck, it has to be done. No poppers to be seen on this suit so if you want to humiliate your baby like I am and have creaky hands then get this. I have checked all retail shops for accessible outfits and the Supermarkets yet again win the award! Also in Sainsburys, there is a spider outfit for little ones that has no poppers!

Secondly we went to see "We Will Rock You" at Bristol Hippodrome yesterday. It was excellent and also as a day out to the panto with children this theater is excellent at sorting out accessible seats for both those in wheelchairs and those who can transfer to seats but can't do stairs like me. Can't fault them and what is more, you get half price stall seats and you can take a carer/friend and get their ticket half price as well, or at least a huge discount. We Will Rock You was fantastic but our son stayed home with Grandma as it really was rather loud and probably scary for a nearly 10 month old!

Grandma no doubt had memories flood back of her four children yesterday! Christopher does not sleep during the day AT ALL! He is up, he likes attention, he will entertain himself for ooooo no more than 10 mins and then he moans until you read or cuddle him. Poor Grandma looked a bit exhausted when we got home. Mum has always been great, always there for me but in a way that has encouraged me to keep going,the children in my hospital ward were brought in toys, my parents brought in "Letts revise" guides! However when it comes to parenting I am absolutely exhausted and I sometimes wonder if life would be so much less painful and exhausting if we sat in wheelchairs and got carers in......NO! No can't do that, won't do that. I have a serious aversion to wheelchairs in the home, they are like big black spiders, I want them out ASAP! I know I have to use one out and about and my OTs would often feel I should use one every where but as my specialist said when I was a child or shouted at parents who allowed their arthritic children to use wheelchairs,"USE IT OR LOOSE IT".

My friend with Juvenile Psoriatic arthritis, who is a UN interpreter and now living in New York, is known as an "insanely happy fog horn" by my sister. We always try to be the best we can be,we don't really talk about our illness publicly, in fact I only do so via this blog, she does it through a therapist because she was finding it difficult to constantly keep the stiff upper lip we had been trained with throughout our childhood, in fact it was my friend visiting me and telling me about how she realized we bottled it all up and kept it all quiet that made me think, actually she had a point, maybe sometimes we needed to talk about the "arthritis" word. Sure we are in pain and sure we have regular tools taken to our joints to fix them but we never stop using them for the fear of god we had installed in us by this scary consultant we both saw and equally we both know how right she was to screech at those who sat around, I guess really both my friend and I have an awful lot to thank this doctor and our parents for.

Today my uni friends are still over, we will just relax and stay in as we have to travel back to Bristol next week to see a man about a new ankle joint.

Am sat here cramming a grain bar down me, it's 11am! Every parent knows how it is!

x

Wednesday, 19 October 2011

New thing to do with a nine month old!

I found something new to do with our son today! We have loads of books which we read to him at least three times a day, "Penguin" by Polly Dunbar  being his absolute fave!
Penguin by Polly Dunbar
From all sorts of good book shops,but  lovereading4kids.co.uk  is a fab website for children's books.
We do flash cards, we sing songs, we put him in a walker and although he doesn't walk, he at least is in an upright position and his feet can touch the floor and all it needs is the thought being there. We also sit him on the bed which acts as our floor for the main part and we spread toys around him. We try to put him on the floor at least for an hour a day because in the 20 mins it takes us to manage to get him on the floor, he may as well stay put for an hour.

Fantastic calm,kindly "Cbeebies" tv programme on at 6pm and on BBC2 10.50am.

We really don't like tv but I think we cut ourselves up about using it at points during the day. Our son has Waybaloo on BBC 2 followed by In the Night Garden around lunch time, then it goes off. Then we do more reading, singing, bed/floor time. However it gets dull, I'm going to be a bit honest and say that often parenthood seems dull when at baby stage of development. It is rewarding, the smiles, the chuckles, even the noisy farts and the look of complete content when he does it, all make my day and seeing him first thing in the morning makes my heart feel like it did as a child on Christmas day,every day.

Why is it dull? Well because it appears that it is your role as a parent to be a toy demonstrator which sounds fun but day in and day out, it gets a bit slow.This particular job description as a parent involves you showing off your brick building skills before the bulldozer (aka baby),comes along, you spin spinning tops, you try to play with the Xylophone before your child sticks it in his mouth etc.They watch you, try to copy, then get bored and grab something else, shove it in their mouths and its back to you to do more demonstrations.

Today I found baby massage. I gave him his mid week wash by putting him on his changing matt and giving him a bed bath. Afterwards I dried him and got him off his matt, onto our bed and on top of a towel. I dug out baby oil which lurks in the back of his drawer as we hardly ever use slippy lotions as for two people with very poor grip this stuff is hazardous, please use very little if you have similar difficulties. I put a drop of oil on my hands and gently moved my hand over his little feet, my hands are stuck in fist shapes and my fingers have grown weirdly and lean to the side in a walking stick shape so I can't actually do normal massage.However I gently used my back of hand to move the oil over his feet and legs which worked for him. Then he rolled onto his front so I took the opportunity to pop some oil on his back and rubbed it in, he nearly fell asleep.

If I can do baby massage then I should think any one can give it a try. Its about finding your own way, you don't push like you would massaging an adult, babies just need a gentle rub, its supposed to be nice for baby and bonding for you.

Anyway he loved it,I loved it, to all bored parents maybe give it a whirl. It kills a good half an hour so really it is a win win situation, moving the day on and entertaining! Chris has a glow in the dark star show that is projected from a turtles back, not only does it project stars on the ceiling but it also has a relaxing sound track of flute playing or sea and orchestral music so I put that on during the massage, you could almost have mistaken a sixties house in Gloucester for Bath Thermal Spa!

CloudB Twilight Turtle from Amazon uk

Happy days people. Keep positive, keep having the "I can" attitude guys but take care of yourselves too x

Tuesday, 18 October 2011

Tomato sauce on the floor.

My "Canine Partners" dog,friend and carer. The kindest dog in the world.
                                                         

Our house is a bit bonkers at the moment. I have a golden lab sat here looking a bit cross, a son in a walker looking a bit like he is willing his legs to move the walker to get to the dog. "Waybaloo" is blasting out, YoJoJo is sounding far too smiley! We have friends calling on the phone as they are coming at the weekend.They keep asking random questions about what will there be to eat, not high on our priorities list right now!

Mr Tescos has just delivered, what a godsend online grocery shopping is to any parent! Fantastic for creaky people as when I am in a supermarket, I can not reach anything other than a shelf at my 4ft 11 waist line, plastic hips and knees mean I don't bend and arms that don't stretch. My assistant dog comes with me sometimes to the Supermarket, she takes a long sniff as we walk past the butcher counter and always keeps a beady eye on the soft toys in the toy section but she can also help get items off a shelf for me as long as it's a shelf below my waist line! She can also take my purse to the cashier and they can get my card out, some of these dogs even can do chip and pin with their noses!  However all of this is a long and exhausting process for both my dog and me, it can take me two hours to get around Tescos to buy 15 things on a list. So hurrah for online shopping!

Unpacking is madness! My husband has just managed to throw the ketchup every where, his brain works quicker than his arthritic joints, we have smashed several plates over the weekend, not due to any domestic row or because of a Greek party but because his hand forgets to grasp things, we need to buy plastic plates soon or shove dignity aside and eat from our sons plastic baby bowls! The dog is looking lustfully at the ketchup all over the floor, our son still wants to try to run her over in his walker.Yojojo is still singing on the tv! Gosh being a parent is fun and games,right time for every one to calm down, dog to be put out of site of tempting ketchup, I need to make a cup of tea for husband, our son needs to go to bed and then I need to hit the online high street for Christmas shopping!

Parenthood, it is bonkers! I could not have been told this prior to being a mother.No one could have relayed to me how manic it all is or how actually as an ill parent it can drain you, you may not get to eat all day and you may not even get time to get fully dressed,comb your hair or even get to the loo! Equally no one could have told me that no matter how exhausted you are, you miss your baby when he is asleep and you can't wait for him to wake up and all the madness start again!  :oD

Sunday, 16 October 2011

Are we all too over protective ?

                                                             

Oh dear dear dear, do any other mummies and daddies feel awfully neglectful when ones child hurts itself!?

Christopher is now rolling like a barrel! Rolls to the left, right, diagonally. He doesn't crawl, I think he feels crawling is a mugs game, if he can put minimal effort in for maximum reward he will do, he just rolls every where! I have even tried to get my assistant dog to demonstrate crawling as she can do this,a circus talent of hers.  His Daddy occasionally struggles onto the floor and on his tummy to show how to crawl, he looks like a clumsy huge python, bless him, as he can't actually bend his legs up to demonstrate! Nope our son will not crawl, nor will he get himself into a sitting position.

So on the bed he went,same old routine.Did our wrestling act of getting him dressed, I am a step ahead of his game now and I have a key. He is only allowed this when he is getting dressed and it keeps him still for a whole minuet, just enough time to put a new nappy on him!  After a 30 min battle he was dressed, we read 4 books which he loves, sang songs and then I could hear the tv blasting and no one watching it. So I put him in the middle of the bed and in the one min it took me to turn the tv off he had rolled and rolled and rolled to the end of the bed and wacked his head on the foot board, oooops. I felt very bad. I was stupid to leave him and should have thought, it takes me longer to do something than it does for him nowadays. Stupid stupid stupid and I'll remember to get my dog sat at the bed side in future to at least create a barrier!

Equally the Psychologist kicked in. I wondered are we all a bit too over protective as parents? I mean really does a child not need to have gentle accidents like that to understand the concept of being careful? Even as a very ill child I had my accidents. I was on my trike when I was about 10, we never went any where in a car, sitting was not allowed so we all would go on a bike ride for about 5 miles. We got to a really steep hill and my siblings went flying down it, mad grins on faces and then could pull the break leaver to stop! My mother and father forgot to hold onto the back of my bike and I forgot my hands couldn't pull a break lever! I lost control! I had the sense to turn the bike into someone's drive so I didn't just go flying down the hill and into a road. The trike went onto one wheel, I nearly fell off and both my parents and I were shaken up but I learnt! I reminded my parents to hold on to my bike, I took responsibility rather than relying on them,I had more confidence to go out on my trike on my own because I had dealt with a situation on my own. If we constantly loom over our children are we not just helping to create adults with problems in the future, who won't be able to cope with trivial stresses or worse still feel frightened by life?

 VERSUS 

Equally there are 6/7/8 year olds going around primary school and the high street with Iphones, why? What happened to enjoying play with toys like Lego or Sindy Dolls? My little nephew had tea with me last year, aged 7, he and I sat at the table and it was nearing Christmas, I asked him "What would you like Father Christmas to bring you?" , he said "I don't know but I know my friend is getting an iphone for his birthday". I asked my nephew, "if you had the choice between an iphone or a trip to Euro Disney ,which costs the same amount, what would you choose?", he replied, "Don't be silly Aunty Caroline, EuroDisney of course". Apparently not of course to some though cheeky so and so! Then there are children who are brought every thing throughout the year and go every where so when Christmas comes around it is just another day. Again childhood zapped. Disabled parents can not take their children out all the time, they can often not get their children near a shop for months which in some ways is good as they can't get into the "I want" game but equally a bit sad. However when my son is taken to the Zoo, EuroDisney or Alton Towers as a treat surely he at will have appreciation and excitement, he at least will act as a child.

I don't know a lot,I am a first time mother and can only reflect on my own experience so far and stuff I learnt in my first degree but real experience is nothing like the books make it out to be! Maybe when a child gets to 6/7/8 then Lego will be stone age. Maybe Angry Birds on an Iphone will be ancient. Above all I know I want my child to have a childhood, I had one but a lot of it was spent in hospital, on my own stuck in bed on traction for years and being schooled by a private tutor. I want him to be out and play, I won't be able to loom over him,run after him but I'll trust my child to always do the right thing and behave correctly. I know when I can manage to get out with him we will have such a special time together, a real memory for the both of us.

x

Wednesday, 12 October 2011

Car seats saga lesson 1.

                                            8 rules when checking baby seats out.

We all need a baby car seat and whoever designed the things were having a chuckle but here is my guide to finding the easiest car seat if you are disabled, have a bad back etc.

See below,Motability ,a fab charity for those on DLA mobility component.
Rule 1: If you are due to renew your Motability car then make sure it has isofix seat attachments. I am quite sure this is something most modern cars come with.It really is as simple as click the isofix base in and then wack the car seat onto the base and go, no mucking about with seat belt straps to secure the seat which is impossible with restricted movement, pain, weak muscles etc. If you do have Motability but your car is not due for renewal but are pregnant and you feel your circumstances and need are drastically changing then talk to Motability staff, they go out of their way to help.
New Vauxhall Meriva with doors that open differently allowing easier access to child seat and has isofix.


Rule 2. If you don't get Motability and have an old car don't worry,go to Halfords and Mothercare for your car seat and they will run a free service to fit the seat into your car so don't struggle on your own.

Rule 3. Check how the carry bar works because it also acts as the roll bar so you need to be able to put it up and get it down, we forgot to do this with a rather expensive model which I'll talk about in the next blog, we were so excited we could work the safety belt release button we forgot many other aspects! I can not get the handle down to get my son in and out because there is a button either side of the seat and you have to push both in whilst pushing the bar down with your head!
Maxi-Cosi Pebble Car Seat - Intense Red
Car seat, easy button to press to release straps, negatives are the difficult carry bar mechanism and deep seat!
Rule 4. Can you work the safety harness button? Can you A) do up the seat belt and click it into the safety belt mechanism and B) Can you work the button to release it?

Rule 5. Contact the charity,Remap. I haven't gotten them to look into our seat yet but I have already said what stars these guys are. I always feel it is the charities rather than government lead organisations that produce the real life changing work for Disabled people. Time for an analogy: I always find tribute bands are often better than the real thing,people really try because the tribute has to work for its money, the big guns with millions of pounds do a half hearted performance,look a bit bored,wish they were else where,feel a bit resentful of their mates in the private sector raking it in without having to deal with moany public etc etc. I can not praise Remap enough, if you have a need that isn't able to be met on the market or have already purchased something and realised you can't work it they come to the rescue and adapt it.

logo
Remap site

Rule 6. Try a travel system at Mothercare, get them to fix the car seat in, they will be happy to help,get them to allow you to wheel the travel system out and practice to see if you can lift child in car seat out and onto buggy base, if you haven't got your baby you will have to engage the old brain and imagine a heavy weight in the seat or take a few tins with you or flour. I could never hope to lift a child out in the car seat,it would break my elbow and wrist joint. Personally I prefer the system of a car seat in place and just having to struggle with the baby. Have a buggy folded out, ready to plonk baby in straight away and have buggy right up to the car so you are not lugging baby for any distance.

Rule 7. Check how deep the baby seat is, if it has whacking great sides and you have very restricted arm movement and much pain do yourselves a favor and walk away from the seat, even if it has a nice big button to release the harness, isofix etc. I stupidly didn't think about this aspect of a seat, now I have a heavy 9 month old and I just can not even start to lift him out of his car seat because of the built up side parts of the seat.

Rule 8. Don't feel worried if like me you actually can't take your son out on your own, they will be walking soon as some yummy mummies have reminded me on here. They will soon be climbing into their own car seat and you will be able to take him to Playschool or anywhere else. Let me quote from "How to teach your baby to read"  by Glenn and Janet Doman, two top bods in the world of child development answering the question of "If your child reads too early,will he be deprived of his precious childhood?", answer "Nonsense! What he likes the most is spending ever minute at work and play with his family, nothing,just nothing,can compare with his family's undivided attention and if he had his way that's the way he'd arrange it."We took our son to John lewis at the weekend. We went to the toy department and he spent the whole time looking and giggling at me! Couldn't care less about the toys or anyone else there.

The next blog on Car seats will take place once I have checked out the market and gone through every seat with a fine tooth comb!

x

Tuesday, 11 October 2011

Ooooo so much to say!

I am sure there must be a rule to a good blog such as keep your waffle to a bear minimum? I don't know, there is an Idiot guide to blogging somewhere in the house but I'll be blown if I get a moment to read it.

Ok so what's the story in Balamory today as the kids tv show says.

Well my son is rolling over on his tummy all by himself at last! My mother spent a military weekend with him,making him lie on a rug on the floor on his front and then on his back demonstrating how he needed to work to roll over. If he moaned she made him stay there! It reminded me of my youth hahaha but I'll never be able to thank my mother and father enough for being tough with me, making me do my exercises, wear splints,practice walking or if I couldn't walk at least stick me on my tricycle!

However now my son is rolling over on his own, changing his nappy now takes quarter of an hour, that's right 15 ridiculous mins about 5 times a day of exhausting wrestling! I nearly cried, I don't do being pathetic and crying into my soup and saying "I can't", I sat on the bed beside him for a min and worked out how to manage this update in his development. I didn't want to shout at him because development is excellent. So I got all books I could get hold of easily and rolled him back onto his back using my head and elbow and stuck a book in his hands instantly. Boy I had to be quick and we still ended up fighting each other. He gets really cross with me being slow and bumbly hahaha, tough! 15mins he was changed and we could sit and then we got down to the pleasant business of reading his books to him and flash cards.

My hubby is ill today,he can hardly move, so I am eating some Turkish delight for breakfast as I type this. He usually helps me get the milk down from the fridge in the morning for cereal but not today and the toaster is too high for me to reach.I've thrown up three times which is what I do every morning because I take Tramadol and we can't get breakfast sorted quick enough because Christopher needs to come first, yet I need my tablets as soon as I wake because otherwise I'm as good as one of those mini IKEA ironing boards, small and not bendy! Ok ok I con seed maybe we need to consider lowering our dignity and getting a blooming carer in when the hubby has surgery,hate having a carer, humiliating and invasive but there we go,my parents come in and help out usually on things neither of us can do but they are getting old and I want them to have a life.

What really makes me mad is,as an arthritic,if you decide to take yourself into a wheelchair because it is less painful and very understandable and get a helper in because it is less exhausting and understandable you are seen as someone who is more deserving of help and advice from professionals. If you struggle on your own, to not want a carer and accept you will be eating tea at 9pm at night after trying to do all with a baby and keep a home and care for one another and my assistant dog etc you are seen as not valid enough for advice/help from professionals on looking after your child, home and personal care,its madness,don't blame any one who needs to have carers and use wheelchairs, of course not but I do blame professionals for being a bit simple sometimes and only responding to visual stimuli.  So the question is, and I hear my family in outrage at me typing this, do we quit? Do what OTs feel is sensible and just sit in wheelchairs all day, one of their big motorised ones they keep giving me and get the state to pay for a full time carer to help us? Or do we continue to try to be independent and accept we are making life more difficult for ourselves by being so but my son will never have to grow up thinking Mummy and Daddy "can't" but instead Mummy and Daddy always finds a way? I don't know. Maybe if we quit we wouldn't have to have so much surgery on our books and not have to go through the heart wrench of leaving our son.

Anyway sorry for being dull and moany god I need to snap out of it, my parents have always said moaners don't make friends which is so true, really who wants to hear someone go on about their health and themselves,so I apologise. No more moaning. We went to a rock gig last night, first night out in absolute ages! My mother baby sat, my best friend came with husband and I,our friend is a professional carer as his job, not our carer just a cheeky friend however he did help get my wheelchair out of the car(yes I know but I have to use it out and about because I can't attempt walking on un even ground as my feet are wonky and I fall over easily,it's ok to fall in the home which I do because I just land on my face on the carpet and my dog helps me back up). There is nothing my friend likes more than to challenge society views, he is cheeky, pushing me up a hill he shouts loudly "you sumo Carrie",I'm 6 stone. On the way into the gig he pushed me into a corner facing the wall and said, right I'm off for a beer haha the look he got from people hehehehe. He didn't leave me in the corner by the way, I like this behaviour it normalises every thing. My husband and I got to the "special folk" place but the bar was too high for me to see any thing so I couldn't see the band but I enjoyed the people watching and the atmosphere. The O2 in Bristol has lovely staff, they whisk you through every one, told me you could get a carer free ticket, I never knew that, so if you live near Bristol peeps and want a night out ask when booking for a carer ticket so you can have your friend along for free! Take a big cushion if you are in a chair and tiny like me cos you won't be able to see over the bar where the wheelchairs are placed.

Ok tomorrow I shall be blogging on car seats, think I need to get this blog back on track which is I am trying to help all disabled parents so you'll have normal me back after this commercial !

x

Friday, 7 October 2011

Reality-Pregnancy to birth to first time home as family.

The reason I started this blog is because someone needed to start the ball rolling of getting UK help out to  disabled parents. There is a serious lack of input from professionals and it just is not enough to have the odd random web site where there are the suggestions of where to buy specialist cots at £2000 a go when actually you need to learn where to buy popper free clothing and how to change a nappy with ease.

When I was pregnant with Christopher I had no information. I was seeing an OT at the time about getting our bathroom converted to a walk in shower, she knew I was pregnant and almost fled the house! She suggested absolutely nothing, said that I should look on line, that was the extent of her help, frankly this is hopefully a rare and exceptionally poor response as an OT in 2011. If you are too old to do your job and can't come up with more than that then for goodness sakes leave! There are lots of people with real drive and ideas available on the market.

She did keep going on and on about how I should get a kitchen sink that was on a platform that could go up and down and then discussed her problems she was having with her thousands of pounds kitchen installation of her own. I decided I didn't need a Disabled Facility Grant for such a ridiculous bit of "special equipment" when there are others who would really need funding for something like that but we could buy our own IKEA kitchen and do our own adaptions to any thing.

I went to see the Midwife who was a very sweet lady but she knew nothing about working with disabled parents. She waived a bit of paper under my nose and said there is a breastfeeding anti natal class going, she didn't tell me if there were stairs I couldn't do,parking availability,chairs available to sit on as I couldn't get down on bean bags! At one visit to the Midwife clinic she proposed I climbed two flights of stairs despite knowing that I had to have a stair lift at home as I can not climb stairs!

The best experience I had of being a "to be parent" was the medical team, such as the anesthetist and consultant. I had to have a C-section at 35 weeks and Christopher had to be a planned early delivery because I am petite in every direction and I have fragile bone construction, the team were concerned about what the extra weight would do to the joints. I was given steroid injections to make sure Christopher's lungs were developed well before birth. The anesthetist discussed knocking me out as I have a very curved spine so they can not get epidurals in any where. My neck does not flex enough to stick tubes down my throat when I am out so they have to stick fiber optic tubes down my nose and into my windpipe whilst awake. They used morphine to make me very zonked whilst they tubed me. The anesthetist was fantastic! He took  his time, looked at my difficulties and reassured me. As was the whole consultant led team. Medically I was well cared for and closely monitored. Christopher was a little stonned on Morphine when he was born but he came round and I held a perfect little chap at 2.30pm on the 30th Dec 2010.

After birth I was stuck on a normal and under staffed maternity ward. I could hardly move from the C section, I had to learn to pick Christopher up on my own as soon as Mark left, this was difficult because I had started to cease up which always happens to me after anesthetic. With burning arms and hands I gently found my own way of picking Christopher up, only a few hours old and he was patient and the calmest baby in the room. We worked together. I dragged a pillow over my lap whilst balancing Christopher on my bed and managed to get him onto the pillow and bent my breast to him to feed him. I have no idea where I got the pillow idea from, I think I had seen breast pillows in shops and thought that might mean I don't need to hold his weight so much.

Mum and Dad came in with 35 week old titchy clothes, with elastic waist pale blue cord trousers and a nice envelope neck little top. However with my ceased hands and arms I just couldn't get the clothes on him in the morning and so I put him into good old velcro long sleeve vests from Mothercare until Mark came and helped me put a little more on him.

I just got so upset in hospital, my husband was tired and feeling sad without us home. I couldn't manage a darn thing on the ward, there was no accessible shower, no nurses trained in working with creaky people so at times I couldn't even undo my own medication bottles to get my required drugs, the cot was difficult to lift Christopher out of, they served food somewhere in the ward, no one showed me where and I couldn't have walked there any way as I was starting to get the flare women get with arthritis after having a baby. I was sliding myself out to the loo and stumbling back on legs that were giving up. In the end I just said I am going to have to go home with my son because this place is not set up to my needs. Still no OT came or any one to offer ideas on daily child care of my son and it seemed pointless sitting around in an inaccessible place. At least at home my husband and I had gone and brought shop brought baby stuff that could help me.

My husband struggled to haul me into the car at the hospital because my knees don't bend much and yet I couldn't use my stomach muscles from the c section, to move myself into the car like I usually do to compensate for my lack of bend ability. We got home thank god.

It was New Years Day. I was full of usual parent feelings of "oh my god what do I do now" and then the reality of the disabled parent of "oh my god how can I do the next baby related thing!?!"

This is why I am working on this blog and why I have huge plans for a new web site. Something that offers real support to disabled parents,creaky parents, bad back parents or just normal parents. I have so many ideas and so many plans.I will make sure I get help out to parents to be, let them know you are not alone, lots of disabled men and women have babies and lots of fun,huge joy and happiness is to be found.

x

Tuesday, 4 October 2011

Ouch!

Me with my assistant Canine Partner dog, she is the best when I am ill.

I have those days where I lie in bed awake at ridiculous o clock thinking I do not know how I will stand up today. I literally do not know if my feet will engage with the floor and if they do, if I will be shot to the ground with pain.

We had a nice day out yesterday as a family, the first in ages but wow the bird and deer park is hopeless for buggies and wheelchairs! It is all built on a steep slope! Sure the tame deer were almost at my side standing still as if to give me a hand, but at times I just couldn't climb because my stupid ancient ankles don't flex that way. As for my poor husband with dodgy shoulders and hands any way, he was left trying to haul my son up in his buggy. Still we managed somehow and sort of laughed although our son ,who was wailing, was saying how we all really felt. We decided we had earned a Carvery meal,we got there and Christopher decided we were not going to get to eat it so we fed him half of it and shoved what we could down our mouths. We got home at 2.30pm and were exhausted, we could barely walk. The irony of it is is that the little so and so cheered up as soon as we got home, grrrrrrrrr. Still for his own good we are going to struggle out once a week as a family.

Today my husband and I just moaned for a good two hours, we both were stumbling to our pain killer drawers. It isn't the pain that zonks us out, it is the immune side of the illness that gets us, it starts off wiping your body out of action the same day as any activity, by the next day you feel swollen, hot, like you are burnt all over,like someone has stood on your hands and feet in huge football spiked shoes. The problem is our son is ready for action at 6am and he is there with a huge grin and babbling chatter. However many steroids we take for the day, no matter how many opiate pain killers we gulp it can't sort the immune side effects out. Son is sat there on our bed looking around for a good fun time and he has two young ish adults who are like 100 years old in their bodies, looking back at him with pale faces and black rings of immune illness around their eyes,I am surprised our son doesn't cry when he sees us in the morning!

So today we all went back to bed at 12.30pm after having played with his bricks on the bed, reading every book he has in his room and doing his flash cards, all stuff that can be done on a bed. We physically could not get our hands to function any more than to do nappy changes and to stick a vest on him. He was happy with that.

We will go out again next week, we have to for his sakes but we have to just get used to accepting that the next day we will need to do very little, that's hard for a Psychologist and Graphic artist, we don't have numb minds, we hate daytime tv and we try to keep mentally full days. However sometimes we need to accept our limitations,deal with the exhaustion. Our son will need to learn that we will give our absolute most to him in whatever way we can but there will be days where we just can not be full on fun machines. We will never let our son do any thing to care for us because we had him to be our son and for us to care for him but I always think it is good for a child to grow up being perceptive of others plights and be understanding and patient.

Heck he may get sandwiches instead of big meals on these bad days but we'll sling in some lettuce leaves for the healthy brigade,he may get read every Mr Men book in my extensive collection of "childhood books brought to bribe me to stay still for my blood tests", instead of playing in the park but he'll always have so much love.

Monday, 3 October 2011

Slippy stuff = dangerous nightmare!

                                              

It is ridiculously warm out there but I feel a pressure from Society that we all should be out and about like Mad English men and women we all are. So today we hit a bird and deer park near us.

It took the usual two hours to get out of the house, once one has taken all medication we require to move for the day and move enough to have our usual wressle with Christopher over dressing him.

Then it was time for the sun cream- take note, some sun creams are so dangerous if you have problems lifting your baby without cream! I put on him a nice highest factor Nivea cream, it has always served my sensitive and very fair skin well so I thought lets slap it on my son for the day. I started at his arms, let it sit for a min and then did my usual pulling him into a sitting position on our bed, he knows how we do this and offers his little hands into each of mine and he tries to sit himself up whilst I pull him into the position. Only this time he went flying back and fortunately into the comfort of a squishy bed, it would have been a dreadful story if we were on the stairs or lifting him into a car seat, it makes me feel very sick thinking about that so I'll move swiftly on.

I then spent another 30 mins making sure not a smidgen of cream remained on his skin because every time he got warm the cream would have been so very hazardous! Please, please hear these words, you won't find this information on Disabled Parents Network or from OTs and yet it is a huge health and safety aspect for any parent with limited grip. There is a solution, my son is not nicely fried to a crisp:

Banana Boat Kids Powder Dri SPF30 175ml
Your best friend in the summer-Banana Boat powder dri,available at Amazon.co.uk or Large Tesco supermarkets.

Banana Boat Kids Powder dry SPF30. What a fantastic product and actually it appears very sought after by adults as well as children if you check out the reviews on Amazon. Not only is the lotion a fantastic make up base,leaving your skin matt and spot free, but my "Able Parents" award has to go to this product for being a lovely dry lotion that is safe enough to lift your baby around with out slipping. The lotion smells lovely, goes on like a lotion and feels fresh, the bottle is easy to squeeze. After 30 seconds the lotion dries to a transparent powder. GET IT, GET IT, GET IT! Use it on yourself and not just your child as only one of you needs to be slippy to cause a nasty accident.

Don't use any cream based product on your child in his bath. Lifting a child out of a baby bath after using cream based bubble baths or soaps is incredibly dangerous. As our son is 9 months old we use Johnson's Baby shampoo, excellent stuff, cleans his body as well as head and has no ridiculous cream or oils. Bin oils for babies, I am sure oils are lovely but they really are so very dangerous. When our son was much younger we didn't put any thing on him except for water and some dentinox for his cradle cap.

Johnson's Baby Shampoo Original 500ml
Does any one really not know where to buy this?!? It's every where,in every supermarket!

Creams on yourself will probably need to go out of your beauty routine along with even combing your hair some days! If you get warm during the day and have slapped on cream after a morning shower, the cream can re-surface and make holding your child difficult. I put creams on at night when I am sure my little chap is not going to wake for many hours.

I am aware I must sound so know it all and cocky. I really don't know it all but the lack of information on daily child care for disabled parents is so shocking that a first time parent like me has had to do something  and make a change. Someone needs to try and share some information out there and it looks like I should start things going. I got told nothing,really that is all a bit rubbish but I could either sit and moan and cry into my soup or I can think right clearly some one needs to change this for others. If any one reads this who is a disabled parent then please, please throw in your thoughts on any of these blogs. I can only pass on so much information.

Thanks happy non slippy mummies and daddies x

Thursday, 29 September 2011

Beating the buggy.

My son is nearly nine months, really needing to go and stretch his social wings. He is a very smiley, chatty chap but I feel he is perhaps getting very clingy to us and as of yet has not really hung out with children of his age. Being social is really important to me,it is a core construct and I don't really get people who are not social and feel sorrow for those children who are scared in school because they were not given social opportunities. I don't know, maybe I am putting a lot of pressure on myself but for my own piece of mind I have to try and attempt to getting him out and about and limbering up his social muscles. Before I go public my son and I are practicing trying to get him into buggy and then into car seat with both our dignities intact.

I shall also be required to do serious weight training. He is almost as large as my upper body now! Not only that but I have to lug buggies about, not something I am good at what with dodgy arms and dodgy every thing body wise! I nearly threw our first buggy, my husband and I were standing in our close trying to see if I could manage to unfold it on my own and fold it back etc. I could do neither and I hate feeling blooming crippled! Stupid buggy. I slung it aside and counted to ten and said "right its time for that simpleton red buggy to come out!". It is fantastic,where has it been all my life!!!!! It has sat in my sons room,lurking behind his cot and I almost forgot about its existence. My mother brought me two buggies, she said I would have to cope with the first and accept I would need help which really wasn't ideal but the second one, with its lack of singing and dancing go faster stripes, just a simple flick out stroller with a nice easy bar to pop down with my foot and kick back up. What a joy!

Advice with buggies:

Go to the Baby Show ran by Emmas Diary, get there early and try as many out as possible looking at all points listed below.

Or hit your local retailer and be prepared to spend an hour at least!

Here are questions to ask yourself- wish someone had told me these when I was pregnant:

1. Weight of buggy minus a child weight- can you lift it when folded, can you push it around with nothing in it. Wheels that twist are useful as you don't need to haul a buggy 90 degrees each time you go around a corner.

2. Now imagine a big old baby in there! Is it still manageable?

3. Don't be fooled into thinking someone else like a hubby,family or friends will want to come out every where with you to unfold and fold buggy, they won't so can you unfold buggy on your own? Are there buttons or levers on it that are hard to do with your feet, hands etc?

4. Now can you fold the buggy because imagine you have just struggled to get heavy baby out and into difficult car seat, do you have the muscle power left to press more buttons, fiddle about with levers to fold the buggy up and lift it into your car?

5. Harness- can you manage to do it up and undo it, imagine a wiggling baby, pull the harness out as though going around a baby or if in Babies R Us stick a big teddy in buggy and try the harness. I would always say get a harness with a big red button which releases the straps, this is a godsend if like me,you have poor dexterity and week pincer grip.

6. Check break mechanism on buggy is manageable for you.

7. Consider a second hand buggy but you do need to be prepared to go and check it. Go on Freecycle and see what is available in your area. If you explain to the Freecycle client that you need to check the buggy first they would definitely understand. A second hand buggy will have a loosened harness mechanism which will mean less hand power also the folding and unfolding mechanisms will be more worn and hence easier to do! However always check the buggy is in good condition!

8. "The more its got the more there is to go wrong"! In terms of for someone with physical difficulties never has an expression been more true. Seriously!!! I have not yet blogged about the awful car seats available and you will need every ounce of energy for getting baby in and out of that, if you take nothing more from this particular blog then do not get a buggy that has more than 2 levers to un-fold and fold up.You do not want to struggle with any more buttons or levers than 3, as I say I nearly threw our first buggy down our close. 

I rarely let life beat me, I rarely get down and always know there are ways around barriers but there are some high street baby items which have nearly beaten me. I would never and have never got mobility aids if I can avoid it, fortuantely when one has a baby and is creaky,one has to accept you will not be able to delight in plastic mobility aids to help with parenting, you will have to think high street baby equipment and try and make some thing from there work for you!

Mobility aids have yet to catch up with the notion that people with physical problems do actually rock and roll and have children. However we do and boy do I love being a parent. The joy I get every morning when I go into his room and say good morning, the pleasure I get from having him sit with his head resting on me whilst we cuddle and read one of his many books, to the funny face he pulls when eating ice cream. I am so privileged in my life. I never forget that. I have no doubt that I am like any other parent on these feelings :o)

Monday, 26 September 2011

Changing a baby with limited arm movement/strength/pain

Changing.

You will need:

  • 1 changing matt or towel 
  • 1 bed or cot with good access to mattress area.
  • A folded open nappy
  • One packet of baby wipes with a zillion removed if it is a poo nappy or one removed if not.
  • 1 open carrier bag positioned with large open surface area.
  • 1 toy for keeping child still if baby wipe packet not good enough entertainment. 


Placing matt on bed/cot place child on top of matt (lifting your baby will be discussed in my next blog). We only use matt if it is a smelly nappy otherwise we don't  as the matt is more slippery but remember to be quick and a pro if not using a matt, if its a first timer nappy change then put a towel down. Have every thing in the list above, near by before you begin so it is grabbable with hand or your mouth.

Place toy in baby's hand almost immediately before any thing else happens to keep him still and not grabbing all of your needed items!


What to do:
Forearm used to lift child's bottom.
                                                         

  • Open nappy on your baby and clean what you can at the front,stick wipe in open bag.
  • A smelly nappy will need you to repeat the below technique a few times to ensure he is clean.
  • If it's a smelly one, use your free hand to remove the dirty nappy and stick it in the carrier bag. Don't worry about your changing matt getting dirty they are wiped down by anti bac wipes. You will need to use your free hand to  grab a baby wipe to clean matt enough to put your child's clean nappy and clean bottom down.
  • Take your childs feet and bring them together whilst bringing your other arm underneath his legs so his ankles are sat almost in the bend of your elbow.
  • Lift the child's bottom with  forearm and with your free hand grab nappy and place it under his bottom making sure the fold that lies across the middle of the new nappy goes up to the middle of his botty, it will seem too far up there is a point to this.
  • When you land your child on top of the nappy, tug with both hands/mouth to get the nappy exactly where it needs to be to fold around him.If you don't position the nappy up high to start with the task is more difficult because you will have to lift baby up and down to pull the nappy up around his waist. Pulling down is easier than pulling up. 
  • Do tags up.Put all away and pop trousers etc back on. Yeay done for another hour! 
What to do if you can't use arm to lift:
Rolling your child to change nappy.His nappy isn't smelly thankfully! 
                                            
  • You will need to use a towel instead of a matt even with a smelly nappy. The matt has edges and you are going to need to roll your child instead so edges are irritating!
  • Place child on towel, on bed his feet facing you. Have toys to the side of your child that you will be lying them on.An older baby will happily support his weight on his side and play.
  • If using your upper arms to roll you need to position both arms at one side of baby,one just under armpit and other arm at his hip level.If using your head you will need to position your head at the waist level on your child's side. 
  • Make sure the clean nappy and items needed are on the opposite side to the one your child will be lying on. 
  • We support our child on his side with our head or one elbow lodged into the bed right by his side to keep him there! With our other hand we grab our near by items. We clean him up etc.
  • Move the clean nappy right up to the side he is lying on even though the tag will bend up that's ok because when he is rolled back the tag is easily popped out or exposed. Position the nappy up too high rather than too low, the crease of the new nappy really needs to be as high up as your childs mid bottom area. 
  • He is rolled back, nappy is tugged down and tags retrieved and done up. 


Phew take a rest, you both deserve to!