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