Thursday, 29 November 2012

Toddler mayhem!

It has been a while since I have properly blogged about what I have found useful in caring for my ,now walking,son as a disabled parent.


The truth is make the most of baby hood because when your little one hits toddler doom it really is madness! I and all my family wished and wished Christopher would get walking, my mum was over here trying to encourage him to get up right, even the dog demonstrated walking for the little mans benefit! Now he is walking I wonder why we were all so desperate for him to do it!?! I guess for my mum the urge for him to walk was because fundamentally we all want a great life for Christopher and the fact is having any disability as a child then later an adult can ,at times ,make life quite hard, not a bad life, but a tougher life. I am relieved Christopher is a healthy child and can do all the things I never could, even play in the garden, other hand wow it's a mega manic household!


First of all the equipment required for creakies to enable a child to practice standing and taking a step:

My son just learning to stand unaided, he was around 20 months here.

It depends on the wheelchair you use, I found an NHS one with arm rests and gaps under the rests was useful as you could stick a garden cane through the arm rests so the pole sits across the width of your chair. Enough pole needs to stick out either side of the arm rests or it will pop out and hurt baby or you or both! Most babies already coasting around sofas will happily want to hold onto a handy pole.


A motorised wheelchair often doesn't have arm rests with gaps so as long as your knees do not scream pain when someone touches them, your child will of their own back use your lap to pull themselves into a standing position to face you.


A baby walker- my health visitor who isn't supposed to recommend them said there are times and places where a walker is clearly a useful tool. The walker allows a child to get walking practice and build up muscles ready for walking. The best walker that holds child upright, we found, was a Babylo walker for Toys R Us and we tried at least three of the darn things before finding this one which was the only one that held him in standing position rather than in a superman position!

From Toys R Us a Babylo Busy bee walker for £29.99

A baby bouncer right from six months old will actually start to give your child an early idea of how it feels to be vertical and start using their quad muscles. We found baby walkers absolutely awful for our hands to try and do and undo but the best one we found that was just about manageable was a Tommy Tippitoes bouncer. Otherwise you may need to take a bouncer to REMAP (see early remap blog) who can adapt one for you.



Once the child is confidently toddling:

This is the difficult stage for those of us who really are very immobile but like every thing where there is a determination to succeed there is always a way!


Camping stores are great for a choice of baby items including reins, they offer half price fleece onesies, plastic feeding items, baby slings, baby back pack carriers and reins compared to baby high street stores. The other disabled parent bonus is a camping store is full of older people who enjoy a ramble on a Sunday rather than a horde of children zooming around on plastic cars and in walkers ready to knock into you and your toddle! We got a bumble bee rein from Atwools but they are also available at Go Outdoors. The bee goes on as a back pack and the mechanism buckle is relatively easy to do and undo even with hands that do not have strength or great dexterity. The bee has a strap attached to the back with a loop that goes around a forearm so as to not break my hand or fingers if he falls.

Bumble bee reins from Go Outdoors uk £16.99, pls go and try reins out because you need ones suitable to your needs.


I don't let him walk where I can not control the environment, he could walk in our lovely, quiet library safely but he would end up getting all the books out, reading them and throwing them on the floor, then my dog would have to spend a good twenty minuets clearing up after him by which time my son would be getting fed up and wanting to go home and making a fuss! No physically ill parent can easily pull a child or pick a child up screaming, kicking and having a tantrum so I don't invite him to get like that by restricting where he goes and when.


Above all the ridiculous pressure put on every one in society to full on entertain a child is a load of dog poo! Our son enjoys a toddle around our garden or his grandparents garden just as much as if we took him to a park. Until I am confident he will walk ok anywhere else he will strictly be garden exploring!


Christopher is at the stage where he loves nothing more than running around the house. Water play keeps him still for twenty minuets,filling a washing bowl tub up with some water and bathing his toys. He enjoys pretend cooking using a small cup of flour, a small cup of coco powder,dry pasta and a pan. Reading is still a big favourite and his speech is amazing, he counts to eleven, he knows his colours, he says words clearly and must say a good three hundred words now. He even enjoys puzzles, I have never known any child like puzzles, I hated them! He is a chatty, patient and bright boy, a little serious at times, I tell him to not fret about every thing, his favourite expressions seem to be "oh no" and "oh dear"!


The down side is he is nearly two, he whines when he wants something and then if he doesn't get it starts hitting us which actually leaves us breathless with pain, he may as well be stabbing us with a knife ,a small hit hurts so bad! We are having to get strict with him, stick him in his bedroom with the gate closed and leave him because we just can not have a child that is aggressive, it will hospitalise us! Mark and I are on very strong medications now to control our constant fatigue and pain, we are on chemo meds which leave us feeling sick and dizzy but we get through it together, we take shifts in caring during the day so the other can sit and rest limbs. It is difficult ,we are all having to muddle through especially as my ankle replacement has failed and likely needs re doing, the prospect of another three months in plaster is miserable but we do not dwell on it, we get on with each day, up before daylight and stopping at 8pm, we entertain one another, chat,laugh and we are all looking forward to Christmassy times with family and friends.


Finally the Department of Works and Pensions was sent a letter from us, declaring mark is going to start writing and illustrating children's books on Kindle which will go on sale on the first of December. The letter was basic so as to not be too difficult for the officials, simply declaring an intention and to ask to whom we should write to to send Marks accounts in etc. The letter went out first class two weeks ago,the first of December is on Saturday, it is now Thursday the 29th of November 2012 and we have heard nothing! Goverment agency at its worst!


Enjoy your weekend every one, Christmas is not far now, get your baby and toddlers Christmas book by Mark Jephcott, on Amazon, on the first of December, how exciting x :D



Saturday, 17 November 2012

Entertaining a nearly two yr old when one is creaky!

Life does exist free from goverment organisation battles or as I call them head banging on brick walls.


Onto real life.


When children get older they come with new challenges, you spend your whole time as a disabled parent thinking oh please get walking because then I won't have a difficulty getting you around the house and we might be able to do and see so much more, hmmmm ,this is just not the case so don't wish the non walking time away!

Christopher can now walk to my stair lift which means I only need to pick him up to put him on my lap to go downstairs or upstairs on my lift but he also chooses at times to not walk to my stair lift and go anywhere else but in a direction I could do with him going! His pastimes include chasing my assistant dog around,working with my assistant dog to get up to mischief (yes my son knows her commands now eeeek) walking into our kitchen to lock our washing machine, to sneak into the dining room to eat the dogs chocolate buttons, to pull 1950s and 60s antiques off shelves, to throw things around like a disc thrower which scares me incase he hits one of Marks or my joints and sometimes a tap can leave the joint damaged or useless for days. Hence when a child is walking and one is creaky you need to get thinking like a toy shop owner in Manhattan at Christmas, you need to be fun,sell your fun to your young listener,be full of ideas to entertain just to keep the little so and so static for a while.


Our list of fun fun fun includes:

I WOULD RECOMMEND YOU START KEEPING AN ARTY DRAWER,YOU ARE GOING TO NEED LOADS OF ARTY BITS ,THINGS TO MAKE AND DO WITH A CHILD FOR WHEN YOUR CHILD GETS ACTIVE NEEDS MORE ENTERTAINMENT. We keep old yogurt pots, toilet roll tubes, wrapping paper, spiral pasta shapes, stickers, paints, glue, brushes,sticky back felt shapes,card etc.

Retro fun, arty, ideas.

Aqua Doodle Matt is a Must buy!

The matt comes with a pen that you fill with water, the water reacts with the matt to produce a blue ink but when the pen is used on the wall your walls are just covered with water rather than ink! A great bit of kit for disabled parents, you can put the mat on a double bed and use to draw on, wash toys in a washing up tub (my son loves bathing his toys). The matt is waterproof underneath so it fully protects a table or bed. This mat would be a must buy for any creaky parent.


Saucepan drum kit

Saucepans make great drums, cheese grater and chopstick, spoon make a great scraping sound. This activity can be done from a sofa, a floor or a bed.


Painting,drawing, getting messy.



A great big IKEA roll of cheap drawing paper found in the children's area of IKEA,children's paints and a roll of waterproof table matt found in party shops for a bargain price of £1. We sit at our dining table, place a waterproof tablecloth underneath,roll the paper out, get armed with paint, hands,paint brushes and we get messy! Paint goes on me, on Christopher, on Mark and on the dog but it is fun and it washes off.


Funny face paper plates.

Making Pumpkin face plates for Halloween but I am loving the Cookie Monster plate idea!

Cookie Monster plate idea from

Make a tight snake.

Making a tight Snake or as my friend calls it a tight worm as my tights are obviously small. We simply brought some children's star sparkly tights from a supermarket for £1, cut off one leg and filled it with polystyrene filling but you could use newspaper, old magazines. In our make it drawer we have sticky back felt spots which our son stuck along his snake and Daddy put two big button eyes and a felt tongue on to finish it off. We tied the end of the tight, don't fuss about with elastic bands if your hands are not good at fine dexterity.

Spooky spiders.

Halloween spider instructions found at
Our spiders we made are just not worth showing you as we were so ill as both our illnesses were raging, mark was throwing up with pain and migraines from spurs growing on his neck, I was burning in my knees, ankles, elbows and we just blindly were trying to entertain Christopher and sat on a sofa making these things. However it goes to show you can make these things even when you can not move and in between throwing up.


You may find piercing holes for the pipe cleaners, in the egg cup, difficult as we did with our rubbish hands. You can swap pipe cleaners for black wool, cut eight same length strands and stick the legs to the underside of the cup, you can use tape or glue.


Retro Playdoh.

Playdoh is a great toy played at a table, when am bed bound we have tried playing it on the bed and have yellow playdoh stained duvet covers, not a great place to play with dough!


Pretend cooking

Simply using a bowl, throw in some dry spaghetti, a small cup of flour, raisins, anything not disastrous if it is thrown about and just mix. Do this at a table, a bed is not a great idea!


Bread cutting.

You can buy children's cookie cutting sets from Hobbycraft or online. Taking slices of bread, simply take a cutter and push into a slice to cut different shapes ,then stick on lashings of chocolate spread on top and tuck in!


This is so far my list of entertainment, it seems a lot when I write it but actually our son probably will entertain one activity for ten minuets if we are lucky and then gets back this favourite past times. Thank goodness Father Christmas is coming soon because we are rapidly needing more things to look at and do!


It is difficult when you can't sling a child in a car seat and go out on your own to parent and child groups, it can get very isolating at times and days feel long. I thank god I have my best friend here who not only helps me but makes me laugh and feel loved,my husband is my best friend, like any friend he can annoy me and I annoy him but we are very together and strong, not only do we deal with our individual body failings and pain but we nurture one another and our son.


I hope our son doesn't see our pain or difficulties we have every day because we don't want him acknowledging that his parents are hugely different. A child should have a childhood and not be condemned to a life of disability and understanding all aspects of disability just because he has parents who are disabled. My childhood was full of disability, endless hospital appointments, stays in hospital for a year at times, isolation due to not being able to get out from traction which rendered me in bed all day and night. Life can be fun and I want my sons to be even better. I very much enjoy seeing my friends and family because that is time for Mark and I to be adults and enjoy adults chat but my little man has brought so much joy into our lives as well, really life is very happy and I will wheel over hot coals to ensure he has the happiest childhood possible :)


Enjoy your weekend all lovely people out there x