Tuesday, 30 August 2011

Bath time perils

First of all equip yourself with a sense of humour at bath time, you will need it! 

This is probably the hardest task for physically disabled parents so also put your "I can manage" head firmly on because you will need all your resources and wits about you as you may have to think quickly or how to manage something easily with a slippy baby or cold baby. Bath time is not the time to forget a needed item and to have it stuck in another room, bath time is not the time for a cold house unless you fancy having your ears ringing by the wailing whilst you struggle to get a child dried with slow hands and then wrestle him or her into its clothes! Preparation is a must. Have two surface areas ready, one for holding all bottles,clean unfolded nappy, baby towel, Bepanthen, bath sponge,shampoo etc. Another surface area, a sturdy table or changing station on wheels right up to the bath so there is little lifting a slippy baby far. Here is my experience, I can only give suggestions but I hope they help. 

As a child I could not chase an Occupational Therapist out of the house quick enough, I hated their plastic nasty looking aids, I hated them asking if I could bake a cake and a roast dinner at aged 8 because non of my friends baked a cake at aged 8 or a roast dinner! I just found them annoying to be honest, now I am an adult I find them less annoying but the knowledge of what to do to help a disabled parent seems incredibly limited and really I have every respect for this profession now I am a woman but they still seem a little clueless but not through their fault but really through lack of disabled people coming forward with ideas or helping professionals with thoughts and tips. 

We had our baby boy back from hospital and nothing to help us, no information, no aids, no visits from OTs, really nothing until my health visitor arrived and got referrals to OTs. I had a lovely young OT visit and we needed urgent suggestions on bathing our baby with limited grip in our hands etc. She was actually very good and suggested a nice looking bath board which actually was a shower board so it had slats in it,was white and looked modern and trendy,not plastic "I am special" looking....shivvvvver! It attaches to the bath very strongly and when Christopher was little I put his changing mat on the board, a towel on top of that and him on top of it all. My husband got into the bath and I passed my son to Daddy who after bathing passed him back onto the changing matt. I dried him off, put a clean nappy on and whisked him into his bedroom onto the bed in his room and got him dressed....yeay mission completed!

Christopher got bigger and a few weeks ago we changed the plan because neither of us could lug him out of a bath easily any more. Out came the baby bath which I thought was going to end up being sent to the tip as a useless item, but its out and doing a job well! Now we put the baby bath on the board, bath board in the middle of the bath, daddy sits on the end part of the bath and holds Christopher, I take sponge and give him a good scrub whilst singing funny songs to keep him still as possible and having fun at the same time. Daddy grabs Christopher and legs it to Christopher's bedroom and we get him dressed. 

The secret is in the toilet, yep thats right, fantastic table storage, don't worry it gets anti bac wiped every single day and it holds every thing required for a quick scrub as mentioned above. Our bog sits right by the bath but we could, if we were not cheap skates, buy a changing station but to be honest I'd rather take my son on a fun day out than spending more money on dull tasks. 

We have tried and tested other bathing methods, we brought a baby bath seat but actually Christopher's legs kept getting stuck in it, he was too tiny in it in other respects and kept getting important places rather squashed so we ended up using mega padding all over, rendering water and bathing a bit pointless! 

Of course Christopher is going to get too big for the baby bath, I am already plotting my next move. I am thinking Bumbo on the walk in shower floor and speedy shower. Other thought, sit on a shower chair with my baby, both shower  with me clasping on for dear life to my son, who knows I have never yet had a task beat me so I'll find a way and keep you updated! 

The thing to remember is don't worry if you can only sponge bath your baby on his changing mat on your bed, he won't mind, he is getting clean. We only bath Christopher once a week because it is a killer on our backs,arms,knees. He gets a good wash down on his mat and we even manage to clean his hair on his mat using the sponge. The books like to say that it is a must to bath a child more than this, is it heck, they are hardly doing the 200 meter sprint or mud wrestling as babies are they! Nothing a sponge and an ice cream box of warm water will not sort. An alternative is a water proof table cloth on a bed, washing up bowl filled with warm water for baby to sit in. It works quite well actually for a shallow splash.

One final and important suggestion is put minimal baby wash in the bath, use a non creamy wash as it will wash off well and leave the baby less slippy. Do not use loads of wash because their skin doesn't really require it and the most important thing is your child is safe and easy for you to handle. 

To get a bath board please contact your local Adult Social services help desk, there is one at every local council and ask to self refer yourself to an OT for an urgent assessment. They will ask why it is urgent, stress the safety aspect, they can not legally leave a client potentially at risk or their clients child at risk, always works! Trust me my mother is a social worker and has read every book on disability rights to the point of boring me when she has quoted from them since I was aged 14!

 Its funny as a child with a disability you feel upset by anything or any one that makes you feel different including physios who make you wear splints or OTs who want to see if you can make a roast dinner as a child, when you are an adult can you can't get hold of any one to help or be interested but the above disability activist tip aka my mother, should help.

Good luck and happy splashing :o)

Monday, 29 August 2011


You would think this was an easy task that would require no blogging about under Able Parents. However it is not always so easy if the floor is out of bounds to you, walking miles is difficult or lifting a child is tricky.

I hope what I am writing today will help but you know what, there is no right or wrong way to do things, I am sure every parent has their own ideas and all are lots of fun for the little one.

When your child is very young they pretty much just lie around, working out what the heck is going on, they will be happy looking at bold pattern so I brought black and white crinkly rag books that have velcro loops to attach book to cot or to childs wrist. There are loads of these books about, I have a faces one and a farm one. Both available at www.play.com or www.amazon.co.uk

Faces (Baby's Very First Book)Baby's Very First Book: Farm

As Christopher got bigger,play surprisingly became more difficult. We had a baby bouncer, not a high teck, super wizz bang one, just a bog standard old fashioned red one. I could just manage to slide him into his bouncer and fortunately,as it was an ebay buy, the buckle to secure him in the bouncer was easy to use.

 From his bouncer I could do the usual shaking of rattles, reading books to him etc. He also could watch Waybaloo on tv from here safely whilst I got on with making his lunch. Around 3 months, you do the play, you shake the rattles, you show them the books etc.

At 4 months we felt it was time he started to work for his play! So we brought an activity gym that stands on it own, not attached to any floor matt, just a simple arch with feet so we could put him on the bed and his gym over him, or in his baby bouncer and put his gym over him etc. Ikea do a baby gym arch not attched to any floor matt, I got mine from Argos,I enclose a picture of it and a link from Amazon to buy one new, you can get them new from e-bay at very low price though:

Beanstalk Baby Activity Gym (3478756)


Fast forward to 8 mths and boy has it changed! He wants everything and seems to have Mr Tickle, arms every where! We have his Bumbo seat to sit him on our bed, or on the sofa, the manufacturers say don't put the Bumbo on a high surface so please keep common sense in mind and make sure Bumbo is in the middle of a large double bed or watched on a sofa (excellent if you have leather sofa as the Bumbo is made out of a leather ish material so the two surfaces grip), you can get a cheaper seat than the Bumbo but it is an imitation and we are never sure if they are false economy? We find this seat easy to put Christopher in as you just pop your child in and there are no straps, the seat holds the child really well and you can get trays for them too. His arms are not restricted by harnesses and therefore free to grab rattles,passing dog fur and anything else! Highly, highly recommend this seat for any disabled parent able to hold the child enough to be able to pop him into the seat. They are available every where from www.mothercare.com to www.e-bay.co.uk

Bumbo Baby Sitter (Aqua)

We do water play, this is a mission but worth the hassle. We fill up a washing up bowl, spread out a roll of water proof banquet table cloth onto our bed. Christopher and I sit on the table cloth, although Christopher can sit un aided now, I put him between my legs as the table cloth can get a little slippy. Then we start slinging in any plastic toy into the bowl, he will splash the water sometimes, all good fun stuff,I think even teddy has gone for a swim! You can buy a roll of banquet table cloth from most party shops, its dirt cheap and probably we'll find it useful later on in Christopher's childhood! By the way if walking with a heavy bowl is difficult then obviously get a plastic jug and be prepared to make three or four trips from tap to bowl, it is worth it!

Rattles are available that are easy to pick up with your mouth or low grip hands,you have to remember a lot of baby toys are designed for poor grip as a baby's grip is not refined so you shouldn't find rattles a difficulty.

We can't get our son on the floor easily but he doesn't miss out, even building a tower with his soft blocks we do by sitting on a bed with a big sturdy foundation book and then we commence building whilst he commences bulldozing! If you don't want blocks to be buldozed onto painful hands then www.ikea.co.uk do some felt blocks!

LEKA CIRKUS Building blocks, multicolour Length: 10 cm Width: 10 cm Height: 10 cm Package quantity: 4 pack
My wrists were not enjoying building activity until I found these!
Reading is fantastic! Christopher loves it although I am sick of him enjoying the same books over and over and over again but he is learning the whole time and grinning.

A decision to purchase a door bouncer was made about a month ago because my sister came over and bounced Christopher on her lap holding him in a standing position and he enjoyed it,we can't do that so the bouncer was a good option. If you are able to do a dog lead type clasp then I can not recommend "Baby tippitoes" highly enough, we had a Lindam bouncer but that was difficult to get on and the fastening was impossible and required so much hand strength, in the end we had to adapt it by going to Go Outdoors and buying a climbers hook, removing the old fastening of the bouncer and sewing this hook in its place.It worked well but was fiddly to put on him, the tippitoes has an easy clasp to attach the harness to the door hook,its easier to put on the baby than the lindam because there is just one strap and clasp to do up around the middle and the clasp is easy, the Lindam has velcro and a buckle to do which makes for an excellent fit but it is fiddly. I hate to keep pressing this point but if you find poppers or buckles hard to do then please think about e-bay because someone has loosened the fastenings nicely for you.

Another mummy recommended the "rainforest jumperoo" because there are no straps or clasps to do and there have also been suggestions by other mummies that the "first years tigger bouncer" is easy as all  you need do is just sit them in a bucket type seat with no fastenings to do up to secure the baby. I can see both of these items would be a lot less hassle but we were given the tippitoes bouncer and we made the mistake of buying the Lindam so we feel there is no need for us to buy any more door related bouncing equipment.

When we go out we do cheap things that are quiet and gentle, we take him around the garden centres pet store which has geese, ducks,hens, lizards, rabbits, snakes, he loves it. We take him to the library, we go to the field on windy days and fly his kite, Daddy has a little more reach than I do to throw the kite in the air but when that goes we have the plan to put kite around my assistant dog, throw her a ball and hope it goes up without taking my dog with it!

 I appreciate there are some reading this like me who couldn't do kite flying. It doesn't matter, there is no wrong or right with play as long as it isn't hurting or upsetting the child. Chat to your child, sing and laugh. Never feel because you can't move like "normal" parents that you are failing your child, as long as he or she is smiling I don't see anything is wrong. Don't take too much of what magazine articles suggest to heart because they are full of what you should be doing,could be doing,could be spending or what others are doing. The reality is every parent is in the same boat, just trying to make their child smile and happy and if that is done on a floor, running around with him or her in arms or in a field with your dog attached to a kite that she is trying to fly for the family, then does it matter?!

I am writing this blog as a record of being a parent with physical limitations, I am worried about what not being able to play on the floor will do to Christopher's development. I stick him on his tummy on the bed and he is strong in that position but he is not making attempts to crawl yet. I just can't allow myself to get stressed about it because I really do not know what I can do. My mother occasionally pops him on his tummy on the floor at her house, but we only go over once every two weeks. I guess I'll let you know if limited floor play had any impact on his development.

Pictures of bouncers as bellow and recommended by other disabled parents, all in stock at Amazon,Mothercare and Argos to date of writing this blog 29th Aug 2011, don't forget lovely E-bay too!

The First Years Tigger Door BouncerTigger bouncer

Fisher-Price Rainforest JumperooJumperoo by Fisher Price

Tippitoes Doorway BouncerTippitoes Doorway bouncer

Happy playtime every one x

Sunday, 28 August 2011

Fantastic mummys

Ok I am sorry any Daddy's, you are all lovely too but today I am blogging happy thoughts.

I went to my usual MOT hospital appointment at Bath Min on the 25th of Aug. I have never...never in my years I have been going there, ever seen parents who are also service users/patients. Today I met two! Its almost as though someone knows how I have been feeling recently, scared,bit alone in the parenting world etc.

One was a smiley lady with an even happier husband, she had a ten year old girl who was smiling, laughing, chatting,confident,kind and articulate. She was clearly very used to attending hospitals with her mummy and she wasn't at all cross,fed up, impatient. Instead she was just such a lovely child. So nice to see!

Second mummy entered, she had been waiting for far too long for her appointment, her daughter was independent and had taken herself off around the shops whilst her mother was at the hospital but I think this mummy was worrying about her credit card being over bashed by her unsupervised daughter! I didn't meet this girl but my husband did. This poor mother was obviously having one of those disabled parent days, she had other things to do as any parent can understand, and waiting for nearly an hour for her appointment was making her anxious! She was dropping her mobile phone which smashed into two bits so my husband also arthritic picked it up slowly for her and attempted to fix it,he is ever the gent.She was so grateful and told us she was having one of those days, we instantly knew what she meant. A day where your hands do not seem to function with the speed your brain is working! She also told us that she had dropped her car key so often that day that she was on her way to a garage ,as soon as her daughter got back from shopping and her appointment was done, to get it fixed and then had to rush home as her daughter was having a sleep over party and she had to get things ready for that. We met her again outside,her car was not starting because the key had been dropped so often it had given up life. So my husband stayed to try and fix it for her whilst I pushed Christopher around Bath. He got it working and she was so glad he had, bless her. However why I am writing about her is because she was still smiling! Despite an exhausting evening coming up and a million things to sort out she was not looking fed up,she did not look irritated with her daughter, she was just getting on and laughing about it. She impressed me, I knew she was in pain, you can see it all over someone's face when you also have a similar illness, she had been kept waiting far too long at hospital, she probably wanted to be joining her daughter in a nice shop together but didn't then have time, she had to drive to a garage to get a new key, she had to go home, cook,clean up and still keep smiling for her daughter and her friends and you know what, I know she did do all those things because the attitude of "I can do it" is printed all over their faces, the "I can't do it" people always have a fed up look on their faces, just something I have learnt growing up as a child and now into an adult with illness. I stay miles away from the "can't do it" folk, they are vampires of the soul!

Disabled people rarely sweat the small stuff, sure there are mega wingers in this category and all as unattractive as the "well" moaners, wingers and can't do ers. However there are the ones that appreciate life, appreciate their child's life, appreciate that some aspects of life are serious but some aspects of life are not and we learn not to sweat the small stuff. We learn prioritisation very quickly in child rearing, I would say I am a dab hand at it after 8 mths of Christopher being in my life. Christopher came with us to Bath but he was laughing the loudest in the waiting room, he was grinning at all the nurses who fell in love with him, he knows mummy and daddy have all the time for him,he had a lovely day prior to the appointment as we had gone around Bath for him to sight see, gone into the Disney store, we met with a friend and went to have cakes and coffee in M&S and Christopher decided he would eat Daddy's cake! We brought him a new book and read it to him in the hospital waiting room, the day was not about the appointment but it was made into a day for him. We got home at 6pm and we didn't sit down until 9pm. We got him into his slumbersac,read him his bedtime story,gave him his milk,sang twinkle twinkle,both kissed him goodnight and then the house work started! It feels like an elephant has walked all over us at the end of the day but we love him so much, we want to protect him from the dullness of us being ill, we want to show him the happy side of life. We don't want to waste the little energy we have during the day running around places he would hate and instead we have to leave this till he is asleep. Sometimes it is difficult to keep prioritising because there are things you are itching to get on with during the day, sure I pop him in his high chair or Bumbo seat with toys whilst I make important phone calls, or he comes out into the garden with us whilst my assistant dog and I play fetch but we all manage and muddle through as a family and we all seem a very happy family at that :o)

So to all parents, don't sweat the small stuff, it can wait! Your child won't be a child forever,life is too short, always make the most of what you have now x

Thursday, 25 August 2011

Nappy Time!

Sorry for not blogging yesterday, I seem to have run out of fuel, Christopher is awake all day but to be fair he sleeps all night so I can not complain. There are only so many Peter and Jane books,dinging on xylaphones, building with soft blocks (cos he likes to knock them down and they always fall on my bumpy wrists haha) etc. I really look forward to when he can walk a little, I can take him out in the car on my own, we can sit at our dining table and play finger painting, bake cakes at our new IKEA kitchen etc. At the moment I spend hours sat on the bed with him sat beside me playing with plastic stuff! Am off to a hospital appointment in Bath so have to set of soon so it will be a speedy one today but a helpful one I hope.

Nappies, you have no choice but to deal with this subject. I have been up close and personal to a few of Christophers nappies because my hands have been too bad to do any brands velcro fastenings with my hands so have resorted to my trusty teeth. My teeth do every thing, what a fantastic tool that was in the human design.

So when you are first announced preggers by the GP you will be reffered to a midwife within 6 wks if you are "special" or 10 wks if you aren't! During the midwife session you will be handed a bounty envelope which contains your hospital notes and some other info from Bounty. You will fill in your details and then throughout pregnancy and beyond be sent free things from bounty including nappy vouchers. Now this is the trick to know in advance. When you are in hospital having your baby a Bounty rep will visit, she asks "What type of nappy will you likely be buying?", as a first time mum I just looked at her dumbly as this was hardly a burning question to me at the time to which I had any real answer. I said Huggies or Tescos own. I only said Huggies as I had read on an arthritis forum that this brand had easy fastenings. I am pleased I did though as I now get vouchers for these products. Important info now:

Sainsburys- excellent nappy, contains everything, absorbent but awful fastenings, tricky to undo, so bad that my husband can not manage them at all and I can only do them using my teeth!

Tescos nappies- Premature nappy is not very absorbent and so more changing required which as you creaky parents know takes a lot of time! However the bigger nappies are fantastic as they have easy fastenings and are absorbent and keep every thing in, even runny poo! Fastenings are so light even someone with a very flimsy pincer grip could do it. With teeth it is a quick job too.

Huggies, a fab nappy for the wiggly child. We are using these now Christopher is 8 mths old, keeps all in, fastenings are very easy with a lot of elastic in that is light and easy to pull but holds Mr wiggler in nicely.

Pampers, expensive and I didn't feel the fastenings were as good as Huggies, less tag to get hold of although they undid easily etc.

I really hope this helps new parents, honestly well parents spend their lives having to plan a military operation around their babies, times this by two and this is what a creaky person  may have to do  :o) But you can do it! You do not have to undignify yourself with a human carer if you do not wish to.I almost came to that point out of despair and loneliness but I researched and thought, no I have never had carers and I am not going to change my ethos now!

Next hot episodes-hahahha, will be about carrying, sun cream and the perils of it and outting and abouting.

Tuesday, 23 August 2011

The Baby Show at the NEC

Ordinarily I hate commercial shows. Wedding shows  make me shiver as I like to be independent in every sense of the word and am never a sheep follower, even our wedding was fancy dress so I certainly didn't require a wedding show that told me where I could buy dull wedding stuff or favors! What are favors about for crying out loud? People get a free party, enough with feeling you have to repay them for attending the wedding unless the wedding is such a dull occasion you need to provide some token for thanking a person for enduring the day! My wedding was fun with little formality and so I certainly was not about to give out favors. Check out the pictures:
One of my best mates as Banana Man and brother as Spider-Man!
My father and me.

Hubby and Best man.
Husband and I (I was wearing wings)

As a Psychologist and a disabled person I felt weddings were a potential hazard zone for people to judge others on their appearances,or have awkward silences whilst no one knows what to say to others, I took those boundaries down!

The "Baby show" however is a fantastic event for disabled parents to attend, it honestly is worth the journey to either Earls Court or the NEC. A show is on every year and if you are planning pregnancy I urge you to go there, if you are pregnant go there and if you already have the baby then drag baby and husband there. We got to test absolutely every thing out and no one bothered you unless you asked them to. We took apart several car seats having made the mistake of buying a car seat cheaply from Argos and not even trying the fastenings and loading of baby, big mistake! Here at the show we could load Chris in and out, try the straps, try carrying the seat etc. We came away, having tested 5 different seats, with a Maxi Cosi Pebble. This seat is rated highly in the recent "Which" consumer magazine but also rated highly by parents with limited grip, limited hand and arm movement and limited strength. I will be talking more on car seats later as there is more to finding the perfect seat than meets the eye. The show gives a decent discount on goods brought there, so we got £60 off the pebble, can't sniff at that!

There are various clothes stores, green nappy stores,toy stores and even gadget stores for men (baby gadgets but it kept my husband interests for a while). Its a good day out, at the NEC there are loads of disabled parking bays right near the entrance, all stands are laid out with good spaces between them but go early because it gets very crowded and would be difficult for a wheelchair user to get close to anything. There are eating venues there which are all accessible as well as cafes for little ones who are weaning. There are baby changing stations at the pampers area and good height wall mounted ones in the toilets. I don't think I saw one disabled person there, although with some disability of course you can't tell. I hope this blog offers some encouragement that it honestly is worth the struggle.

Baby Show link: http://www.thebabyshow.co.uk/

Have a lovely day to all mummies and daddies, Waybaloo is on soon so best go and get sir up into his Bumbo.

Love Caroline

Monday, 22 August 2011

Yasmin-The day in a life of an assistance dog.

As Caroline is consistently going to keep blogging "unless like me you have an assistant dog", I felt I wanted some air time!

My name is Yasmin, that's me in the picture, purple "Canine Partner" tank top, passing the small persons day bag of useful things so Caroline and Mark don't have to keep going up and down stairs with small man.

I am a highly trained dog from a charity called Canine Partners. I am specifically trained to Caroline's needs, although my friends and I as puppies are all taught the bog standard procedures which include loading and unloading a washing machine, when Caroline buys a new washing machine I go to test it out as it is me who opens the door, loads and unloads! We are also trained to retrieve items of a supermarket shelf which is hard going on me as being a Labrador there are so many things I would love to get my chops on but I don't! I keep my mind on the job and look forward to a well deserved bone later.

When Caroline and I first met, it was tail wags at first sight! I was the noisy one out of the lot of other dogs :oD I like to be busy and I get very irritated with lounging around and so I make noise when I am doing nothing, Caroline also likes to be ultra busy and I clicked over this shared personality trait with her. The process for me to pack my doggy bag and live with her was a lonnnnng one. There were a lot of meetings with Caroline and I. Very skilled trainers taught Caroline to use specific commands and watched her with me.  Eventually I got to go and stay at luxury accommodation with Caroline near the Canine Partner training base in Sussex where we were put through intensive training ,for 2 weeks, with the Canine Partners trainers. The trainers took no messing, we were out at 6am eating,playing, I visited the powder room and then hitting the town and training, followed by more work back at base at CP HQ. We didn't get back until 6pm. We were shattered!

After two weeks of unloading and loading washing machines, pressing pedestrian crossing buttons with my nose, taking a tin of beans of the supermarket shelf and passing Caroline's purse to the cashier in the supermarket, wondering around a major City in Sussex during Christmas shopping and keeping chilled despite the mayhem and endless old ladies coming to try and pet me while I was minding my own business,Caroline and I had passed the various tests set up by the trainers! I graduated from "Puppy in training" to fully fledged, nose in the air, helpful,  Canine Partner assistant dog! I'm not a modest dog, I'm not a wall flower dog but I have made a big change for Caroline.

I packed my doggy bag, took of my black training collar and put on my red graduated collar and said goodbye to a dog called Archie. Jumped into Caroline's car and we went back to her home together!

A year later Caroline met Mark, he annoyed me, thinking he could swoon in with his boy smell, I tried my best to shake my smell on him cos he ponged, shook my fur around him, tried to sit on him, glared at him. He still stayed! Eventually I thought he was ok to stay as he made Caroline very happy.  He asked Caroline to marry him a few months later which I agreed to happen. A year later another small person came into the pack!

My job description:

Morning 7am - help take Christopher's morning bag down stairs which has nappies, wipes,a few hand toys and books. Christopher sits on the sofa in his lime green seat and I keep watch whilst Mark goes into the kitchen to grab his food. 

9am I get the mail. Caroline changes Christopher sometimes on the sofa so I sit with her to create a barrier to stop Christopher going any where and make him "stay" on the sofa.

10am I go to the library with Caroline to pick up some baby books for Christopher, baby books are always kept in low shelves which Caroline finds hard to bend down to. 

10.30am Ball time.Playtime for Christopher.

11am- bone time!!

1pm- washing machine time, endless washing to do, a dogs work is never done! Cleaning bathroom floor, Caroline will throw 3 anti bac wipes onto the floor and stand on one, then move her foot around, the process takes a while but I help pick the wipes up and put them in the bin so I try to save her time, she would never get the wipes up otherwise!

2pm- "Driver Dan's Story Train" time for Christopher followed by "Peter and Jane" reading scheme (Christopher and I are learning to read), followed by really noisy play, noisier if Mark is involved!

3pm- Tidy house time with Caroline, constant picking up of clothes, boots and toys, I even pick up my dog bed so Caroline can hoover. I move baby bouncers, baby walkers so she can sweep a floor. 

3.30pm -5pm Christopher in high chair and has lots of toys which he chucks on the floor, Caroline can not pick them back up so I am on duty without a break nearly all this time.

5pm THANK DOGNESS SMALL MAN HAS GONE TO BED! tea time, ball play and bed for me!

Now Caroline's Husband and friends have nominated us to be a torch bearer for the 2012 games and we have been selected at national level but now need to see what happens at regional level, paws crossed!

My job is rewarding, I am happy to help Caroline with her parenting roles, she has never wanted a human carer and always struggled on her own, picking things up with her feet etc which took absolutely ages until I came. She desperately likes to be independent as does her husband, they still do an awful lot, when small person is walking I hope it gets easier as they are both forever movingg around like sheep and I aint no sheep dog!

If any one with a disability is interested in an assistant dog like me then I enclose the Canine Partner link.


Something I forgot to mention are puppy parents, if it wasn't for my puppy parents looking after me and starting my training process off then Canine Partners would struggle. Puppy parents are volunteers for Canine Partners and are a part of a chain that is so important,after all it might not be a lot of fun for a disabled person to have a boystrous puppy about. If you can look after a puppy then please go to this link.


Thank you, big lick!

Sunday, 21 August 2011

A difficult blog to write.

I guess this is adding a bit of feeling into the blog because we can all help out with ideas but its also the shared feelings and experiences that are so important and what are sometimes missed out on when one is a disabled parent and going out is somewhat harder than it is for a well parent, lets face it that is hard enough!

I started going to a mother and baby local library group. I was actually quite enjoying taking Christopher there, my father had to come with me to help get Christopher in and out of the car seat, fold out the buggy etc. Christopher and I sat in the group which fortunately had chairs to sit on rather than the floor. We sang all the classics "Wheels on the bus", "Dingle Dangle Scarecrow" and "Hickory Dickory Dock", I tried to chat to some other mums. I went every fortnight and was really enjoying it until one session I went and sat beside a grandma with her grandchild and her daughter with another child. The session was over and my father ,in his own world ,was studying the audio books the other side of the library so I picked up Christopher the way Chris and I know how, I walked over to his buggy by which time the Grandma said "can you manage love?", I was practically there any way and said "oh yes but thank you", to which she turned to her daughter and other women and said loudly as if I couldn't hear "she don't look safe with him do she". I should have corrected her poor use of the English language along with her incorrect assumptions not to mention her sheer rudeness! However I felt ashamed of myself and upset. I buckled Christopher into his buggy and went to my father. I didn't tell him because I think he would have felt very hurt for me and said something. I still wanted to get Christopher some library books so I just kept my head down, selected some in haste and legged it as fast as an arthritic can! I never went back to that group and fobbed my father off with a lame excuse. It shattered my confidence. So if anyone "normal" is reading this thank goodness for people like you who like to inform themselves and clearly are the type who try to be the best they can, thank you for joining us, equally if you hear any one making such comments or staring at disabled parents in judgement etc, spare a thought, we are bright people, very caring parents and many of us so grateful for the opportunity to be a parent when some of us thought we might not have been able to be. We adore our child, pregnancy and parenthood is not an expectation or something we see as our right, but as a real gift.

Society is a scary place these days for a child to be in, children are having to learn to hurry up, be quicker, stop talking because "I'm busy" etc. These things are just part of being busy, hard working parents but with a disabled parent the child has no choice but to learn patience, equally the child learns to take its time to do something well as that is what he sees from his parents, he learns empathy, to be kind, to not stare, to be polite, thankful and gentle. I can not go out and play football with Christopher or run around in muddy fields and sometimes I get very tearful about that because I want to be every thing to my son, but I can sit with him and teach him to read before he goes to school, do painting with him, play with water with him, cuddle him, pull silly faces, sing silly songs,cook cakes with him,read him endless books,walk the speed of a toddler to see what he sees and above all give him time and patience to do and say what he wants or needs to and listen to him.

 I may be a Psychologist but people I have worked with in the past have looked at me as though I am some mind reader of their feelings, no I am a child who grew up with a painful illness, when I stood in Play-school for the first time I had to scan the room in under a minuet before an adult suggested what I did who didn't understand my fears. I had to work out how each child was so I knew who to stand near, not too close to the boisterous boys, not where the children who wanted to lie around were because I wasn't that kind of child either and that bored me but perhaps where an art table was with safe chairs to sit on and children who seemed kind. I learnt perceptiveness at a very young age and it just has become finely tuned so people think I am some kind of Darren Brown!

The dreaded poppers on baby clothes.


So today I am mostly going to be blogging about anti popper clothing!

I am sure many parents with limited movement in their hands will have found a whole range of great clothing available on the high street that have no poppers and I hope eventually people will come along and add their thoughts, for now you'll have to make do with my mothers and my extensive research (which living in Gloucester is hardly a metropolis of fashion wear).

My mum got loads of newborn vests and my father ,with some heavy duty tool from his garage, took out the poppers so my mother could sew on Velcro via her sewing machine. This was all good but very time consuming for the both of them, I couldn't do it because my hands just could not hand sew velcro for hours. Eventually I decided to start looking around more for Velcro clothing, believing there must be some somewhere. I found some, in the UK and in the High Street!!!!!! I enclose the link for you all to view the baby vests, baby-grows and even baby dungarees all with Velcro, the only draw back is they don't go up beyond 4lbs which was fine for Christopher for a while:
All found online on Mothercare under "Premature clothing"

Vests (come in pink or blue): http://www.mothercare.com/Mothercare-Boys-premature-bodysuits/dp/B001E6D10K?ie=UTF8&ref=sr_1_21&nodeId=132186031&sr=1-21&qid=1313917578

Babygrows (pink or blue): http://www.mothercare.com/Mothercare-Girls-Premature-Sleepsuits-3pk/dp/B003UG1ZN2?ie=UTF8&ref=sr_1_1&nodeId=132186031&sr=1-1&qid=1313917673

Look around the site, there are loads of Velcro clothes under this section, however I had to keep looking for other solutions because Christopher was getting huge!

Next have some excellent zip sleepsuits which frankly are fantastic for day wear clothing in the winter as they are a light fleece all in one suits with feet in them so baby can not pull socks off and drop them on a floor you can't get to (a real issue unless like me you have a Canine Partner dog to pick them up for you). These sleepsuits are only available in Next in the winter so stock up! DLA is there for such times to help you purchase easy to manage things when you see them, do not wait till the sales as they are rarely in the sales, the only criticism I would have is the zip is very small which is fine for me but my husband with poor grip can not manage them so I have tied a bit of blue ribbon through the zip so Mark has a bigger target area to pull at,here is a link:


You can pick up heavier velor sleepsuits from Supermarkets, I believe Sainsbury's are doing a monster one for boys at £8.50 and there is the girls Pepper Pig version too.

Finally back to vests, my husband and I realise that supermarket value ones have poppers that are easier to do up and undo, we just do one middle popper at the crotch area and it works. Alternatively e-bay comes into its own again because the vests on there have been done up and undone so many times by someone else that by the time they are sold on the poppers have been worn in to be an absolute breeze to do up! Ok so the vests maybe look a little washed out by the time they get to you but vests are for underneath and not often on display, in fact my son is lying here beside me watching baby Einstine sporting no vest, just a envelope neck long sleeve t-shirt and some elastic topped orange shorts and he's not moaning about being cold!

One final suggestion, leggings with feet are excellent day wear for babies and available everywhere from Tescos to Mothercare and Amazon. Get a nice long sleeve envelope neck opening t-shirt and perhaps a nice warm jumper or fleece (again you will find zip fleeces and cardiagans from the high street stores) and your child will be fit for a winters day. Look for leggings with thin elastic at the top if you find pulling up and down heavy elasticated items tricky on yourself, it will be no different on a baby. My husband has poor grip so we have a mix of wide elastic trousers for Christopher which Mark can get hold of to pull on and off Chris and I prefer thin elastic topped items.

There are loads of clothes on the high street, Gap doesn't have much in for disabled parents because every thing is so well made their poppers are incredibly difficult to do and every thing they have in there for boys are popper based.

Vests are not necessary at all really, just be clever with layering in the winter.

Right well as any mother will understand, I have 100s of jobs to do and only 12 hours in which to do it as well as play, read and sing with Christopher. The pile of washing is looming over Christopher who is currently lying on the bed beside it, best go rescue him!

Saturday, 20 August 2011

E-bay,a treasure trove for disabled parents.

Today I am talking about e-bay, what a godsend this is for disabled parents and really any sensible parent! The reason it specifically is good for those with creakiness is because one has to constantly try out products and often  may have to hack bits of equipment up to adapt, e-bay offers a cheap way of getting equipment that you think might be useful.

My most recent purchase was a "Bumbo seat" in lime green. My husband and I were in Mothercare, in Gloucester, trying out every highchair in their store, the staff were excellent and just left us to get on with it, nothing worse than someone telling you the exciting features on the latest chair when you can't even get the tray off to get a child in! We didn't know where to put Christopher as we hadn't unloaded his buggy just to go into one store and he was being swapped between us both, getting ever heavier on our arms, we thought we would only be in for 10 mins max! The store had a "Bumbo" seat out of its box so we thought ok lets sit him in there for a min whilst we think if it is worth being in Mothercare whilst he is awake or if it would be better to leave him with one of my parents whilst we dismantled the shop floor display! The Bumbo was fantastic, no difficult fiddly harnesses, just a sit the child in and go situation! We almost began to wonder why we were looking at high chairs.

However Bumbos are expensive and we were not sure, if we got one home,where it could sit.Neither Mark or I can get onto the floor so every thing has to be on a surface such as a bed or our sofa. So we continued looking at high chairs, more on high chairs later.

When we got home we investigated all surfaces that may hold the Bumbo and baby. We have leather sofas and we felt by removing all the cushions we could safely put one on there but we were uncertain. We went onto e-bay to see if we could buy one. There were loads on there at half the price, an excellent method of purchasing the unknown. He now sits happily away in his seat on our bed, on our sofa. We still watch him but with no straps to do up or undo and the grip the seat has on the child, he is very safe. If all you can manage, is to lift your baby from cot to its seat I would recommend you take a look at the Bumbo! I can suggest ideas on here to try and help others through my extensive research of equipment but every ones physical difficulty comes with different issues, even though Mark and I both have arthritis his hands are very dis formed and he finds grip hard so some buckles on harnesses are tricky for him, my hands are quite unscathed and I can grip but unlike him I have poor reach and weaker muscles etc. E bay is a good solution! Think about it prior to having the baby but try out things as much as you can in shops prior to e-baying.

Bumbos are also available from Mothercare, brand spanking new, for £39.99
or Amazon.co.uk for £27.99

Friday, 19 August 2011

Pregnancy and arthritis.

Pregnancy was a breeze! Arthritics tend to go into remission during pregnancy and I was one of those people who felt so well.

 I am going to keep this short because otherwise the blog becomes a lot about me and not about all the things out there that are useful and helpful.

Basically we had been trying a year, we decided if something didn't happen soon we would have to go back onto the medications we had had to come of for conception and instead of the baby game we would travel the world and all things non child related and probably moan about school holidays and too many children about at our hotel etc. We both were in a lot of pain and were quite moody during conception time,hardly a sexy atmosphere!

 In the states they allow the use of an arthritic drug to be used during conception and pregnancy (Anti TNF) but NICE ,sensibly, likes to play safe and the drug is just too new for Brits to allow it during these stages. I was off all painkillers too during this time, what a nightmare.

May the 31st 2010 arrived, we were due to have a load of friends over and were both in agony, I decided before they all came I would do a test and if it was negative we would both take a shot of Anti TNF that same afternoon and top up with powerful painkillers! Out came a tesco test and two lines appeared! I was shocked! So shocked I told Mark who rushed out and brought two top of the range tests, both positive, we cried, I never thought something so normal and happy would happen to me. It did! Trust me any arthritic women, I have yet to see anywhere, anyone write that it is difficult to get pregnant with arthritis. So don't worry and be-careful and plan pregnancy and parenthood.You may be keen to have a baby but planning is an absolute must for imminent parenthood for any parent with a physical disability.

3 months of pain whilst my body adjusted to only steroids was difficult. I had to stop Tramadol (a painkiller that has addictive properties to a child in the womb), Anti inflammatory, Indomethacin had to go as well (too complicated to explain why that has to stop but if you are on it the doctor will go on in detail to you about it). Anti TNF was still of course out of bounds ! Month 4 and wow, "now that's what I call a miracle cure"!

I had to see a consultant specialist who was excellent, although to be honest I think he was expecting an exciting patient and really my pregnancy was just so normal. I am tiny but 12 year olds are having babies now so there were no big shakes with my pregnancy.  I really won't bother going on any more about this because it was completely a breeze.

Just to end that Christopher was born on the 30th of Dec 2010 at 35 wks by an elective C section. I had to have a general anesthetic because my spine is curved and getting an epidural into my spine is just impossible. My neck doesn't flex back so I had to be intubated, prior to anesthesia, via fiber optic tubes sent down my nose and throat whilst I was awake.The anesthetist was so fantastic as he gave me enough morphine to wack me out whilst all this went on. At 1pm on the above date my little boy who was 5lbs and sleepy from morphine, was born to a very happy Mummy and Daddy Jephcott.

My parents came to visit around 3pm, I can only imagine this was as big a day for them as it was for Mark and I because here was their daughter who they had spent months and years in hospital with, nagging at me to keep walking when I was crying in pain etc here she was living a normal life, happily married with a healthy baby.

Thursday, 18 August 2011

Caroline's Early childhood.

I was 15 months old when I was diagnosed with arthritis, no one knows why a child suddenly gets Juvenile Chronic Arthritis. Doctors suspect that in my case it was an immune system overload as I got stung by a bee, had my 13 month immunisations and happened to need grommets in my ears all around the same time!

I was walking at 10 months old and then one day my knees were hot and swollen and as a usually happy baby I just couldn't be comforted. I had fevers and rashes and stopped walking. My parents obviously knew something was up but back in the late 70s, little was really known about Juvenile arthritis or it certainly wasn't a natural diagnoses for a doctor to make so they spent a very scary year in and out of hospital with me whilst they did tests.

Many blood tests later, seemingly in and out of conciousness through high fevers, my parents remember standing in the Bath RUH in a daze, they remember standing outside Bath Abbey with me, so scared that they just weren't aware of anyone or anything. No one knew what was up. They were relieved when I got the diagnoses of Juvenile Chronic Arthritis months later because they knew you could not die from it, they felt at least it wasn't any terminal illness.

My parents read and read and read, they never just listened to the doctor. They read every book they could lay their hands on on Juvenile arthritis! They researched the centres of excellence for JCA, they researched the medication given. I was kitted with splints from head to toe by the doctors, leg splints, hand splints, neck splints etc. I was promptly put on steroids to try and reduce the illness activity, given anti inflammatory that I used to constantly spit out so they had to hide it in jam! My parents had an argument with a doctor as they reduced my steroids without consultation because they had read about the stinting growth and other nasty side effects. The doctor felt they shouldn't have reduced the medication by 1 mg when I started to look well, my parents looked at him and said "what if it was your daughter?". He sat back down and they never argued again! I did my best to make my point as a child, the constant blood tests were upsetting and I only knew smelly as a rude word so I would be crying and screaming "smelly doctors, go away" at every consultation.I knew they needed to test the activity of my illness through taking blood. My parents bribed me to be calm with a Mr Men book at the end of each consultation, I now have every Mr Man book from the 70s and early 80s ever written by Rodger Hargreeves!

So amongst splint making, splint wearing, doctor visits, physiotherapy to keep my joints moving, Occupational therapy visits etc I lived a normal life.I have three siblings, two younger brothers and one older sister who have always been good friends to me. I learnt to read before I went to school, I loved school because I had well friends and I was not being seen as an ill child. I was a popular child and always went to birthday parties and my parents gave great parties back. I think friendship for me was important to my parents as it was normal,they would drive me to all my friends homes as I couldn't even walk two doors down, they would take me to brownies, any party I had on, if I wasn't well they would up some medication or another so I could go.

I spent months in hospital but I always got homework sent to me and sometimes my parents brought in a private tutor to come to my bed side so I wouldn't fall behind. I never felt different in the early years, not one bit, young children are so accepting.

We were living in the Scottish borders when I reached 5 years old so I could go to one of the Centres of Excellence at Newcastle. Here I was to meet a Dr Barbara Ansell, a big powerful lady who sent parents, nurses and doctors into crying wrecks during her ward rounds. Sitting, as an arthritic child, was forbidden by her, we were ordered to walk or cycle if we stayed on her ward (there were bikes to get to different departments in the hospital). There was never a wheelchair allowed as a form of transport. Moving was so important because if an arthritic stops moving they sadly loose the movement in relevant joints which results in becoming wheelchair bound. Something I still practice today, no matter how ill I am I keep moving and certainly being a mummy there is really little choice to be anything else.My parents made sure I had lego to play with or a keyboard to keep my hands moving and they found me a three wheeled bike to ride around with my brothers and sister. I have a lot to thank Dr Ansell for really, she has given me a positive, determined attitude towards my life. So I am ill and so most of my joints are plastic but that never stopped me living a great life then and it won't stop me now!

I will discuss teenage years and early adulthood in future blogs. I would say that treatment for such illnesses have come on leaps and bounds since the early 80s. I believe that, although arthritis is still painful, the medication and surgery available is so advanced that pain can be controlled and without the nasty side effects. Despite the fact that my generation of Juvenile arthritics had older treatment I don't actually know of any one of them who were not successful in life, they are lawyers, Bio chemists, my best friend is a multi lingual translator for the UN in New York and I am a lowly Psychologist. We may be creaky, petite and mostly made of plastic but we all seem to be happy and doing well intellectually and I love being a wife and mother. I think that when you grow up with an illness as a child you adapt to it very well, you forget you are ill. Medication becomes nothing different, taking medication is no more of a thought than brushing teeth in the morning, you do it quickly and then get on with creating your Lego town, playing your keyboard, annoying your pets or siblings and being a normal child!

Independent,positive disabled parents, a journey through being parents and living with arthritis.

Another blog written by parents, yep but this is different....it really is! Sure we are a happy,fun and loving family consisting of one son,one husband (Mark) and one wife (me), no difference there you say. However both myself and Mark have severe arthritis and not of the old biddy type which is average wear and tear on joints over time, but where the immune system attacks itself and declares war on all joints and organs.  I have had arthritis since 15 months old and I have bionic knees, hips, elbow, ankle, wrist.I will be having my knees re-replaced as a result of carrying more weight during pregnancy.I have to be honest I do have limitations (something I don't like to admit in public often),I have zero reach,weak muscles and a walking distant of an ageing snail !

Mark is creaky all over but very tall,I am 4ft 11 due to steroid treatment throughout my childhood.Mark is yet to get fantastic plastic joints and doesn't have the same extensive damage as me as he got the illness in his 20s but he has more immune attack than me (which you get earlier on in the illness) so he feels more flu like than I do.

Rules of the house/ blog, this is not a place for people to moan about DLA applications, if you want to do that there are loads of DLA hijackers on any disabled forum. This blog is a place for people to read about independent parenting. It is a place that says just because you have limited limb movement etc you can be a fantastic mummy and/or daddy. Our only carer exception is in the form of one furry dog from a charity called Canine Partners in the form of a big golden lab called Yasmin,more on her later. We have no human carers as we would feel a certain lack of independence and our dignity would feel like it was sliding away. 

Finally I am saddened that in 2011 there is a distinct lack of knowledge of equipment or how to manage with a whacking big baby and any form of physical disability. Professionals have offered very little because they just haven't been given the knowledge or experience to deal with a physically disabled parent. Being a first time parent is a difficult adjustment for anyone but it is ten fold harder to be a disabled parent,it is harder to get out,hard to be in pain and to keep smiling and hard to fight with the buggy or car seat every day, we regularly fall out with one another! 

Watch this space to read about two Physically disabled parents journey through parenting with our first child. The blog will review high street baby and child equipment that is off the shelf ,easy to use as a parent with creakiness, or requires little or no adaptation. The pros and cons of equipment will be discussed. Every thing from where to buy popper free clothes to how to bath a baby. As a Psychologist I believe play, fun,tranquility in home and books are all good in this child rearing game. Therefore there will be blogs on play when you can't get on the floor and how to have surgery when teaching a child to read! If you are a disabled parent please help build this resource for future parents and comment with your ideas,tips etc. I would really welcome you with a cyber cup of tea x

Art work by Mark Jephcott Copyright 2011