In memory of Charlie.

My blog today is about SUDEP- Sudden Unexpected Death in Epilepsy.

Reality check time. Every one is moaning about what they are not getting, how little they have, how much more others have, how miserable the weather is etc.

I am writing this blog in memory of a ten year old little boy who died 29 weeks ago. His name was Charlie Farley. Below is a you tube clip dedicated to his memory, created by his parents who are trying to raise awareness of SUDEP. I also have to pay tribute to these parents because although they are my sisters friends, I do not personally know them, I can only imagine the inner strength they have had to find that I guess humans can only access when the chips are down.Please take a look.

SUDEP awareness dedicated to Charlie.


1.Every day 75 people in the UK are diagnosed with epilepsy.

2. Epilepsy is another unseen disability, very disabling and can not only effect you emotionally but can do physical harm and in some cases cause death.Epileptics do not carry vis-able items of disability like sticks or wheelchairs but many of them are likely to be as disabled in life as a man sat in his wheelchair. After all those with regular unmanageable grand mall Seizures can not be left alone so have independence stripped, can not go out shopping alone, can be socially isolated not only because of fits but because of how the person feels about themselves.

3.At least 1000 people die a year from Epileptic related deaths and 400 out of the 1000 deaths could be avoided.

4. One of the most shocking and sad facts is that SUDEP kills more people than cot death or aids combined.Yet we all know about Cot death and Aids but I had never heard of SUDEP before.


Most of us do not want to imagine but lets try, our smiling, lively and happy child goes to bed. You give him or her a kiss goodnight, you go in to their room the next day and they are lifeless.


Obviously growing up in hospital I have an awful lot of memories of children dying. I remember too many mothers screaming, too many parents smoking outside as ward rounds brought bad news. I think as a child I just repressed a lot of those memories because in the 80s children where not told what was going on by nurses, medics or Psychologists and medical staff and parents seemed to have no awareness that as children we were all taking it in, we would talk about in whispers in hydrotherapy and try to make sense of it. All most of us remember is just hearing pain in parents wailing.

 I feel very affected by any form of infant suffering or infant death. I had to blog about this today.

Please put aside a moment and look at the clip, learn something new, talk about it with friends or your facebook page but most of all feel lucky to have our children.

Thank you. x

Speedy baby.

My son gets ever bigger and ever stronger. He is tall for his age, although is one year and 5 months old he is  fitting nearly two year old clothes.

He is active, happy, crawling, babbling, loves to read, loves to be read to, can do without television, finds it a bit dull really. He has the throwing ability of a an Olympian and Daddy and I have to watch various flying objects and avoid them at all costs as our rather rubbish joints could do without the pleasure of a building block or a Tomliboo flying at us!

The hardest thing for me these days, is that I just can no longer pick him up to cuddle any more. I can sit with him, read to him, pull silly faces at him, sing to him but I no longer have the strength to pick him up,facing me for a big old cuddle. I always tell him I love him though. If our son hurts himself and is playing on the floor I can not get to him to comfort like a mother should, he is slowly learning the only way I can drag him to my lap is if he tries to stand up so I can put my forearms under his shoulders and slide him up. It is difficult to watch your child, who has bopped his head, cry and look at you as if to say can I have a cuddle and you have to look back and just pat his head and say oh dear.

Still nothing stops us,life does not cease because I am sore and creaky. I suspect no parent with disability stops their life but certainly do not stop their child's life and frankly if so, then stop it! In this day no child should be a parents carer, no parent should have a child without actually trying to be a parent and responsible for their child. I can not abide seeing clips on those sob story charity tv runs with a child of 8 years old being a carer, this is purely bad parenting! It offends me that these type of parents think it is ok and have the disgrace to sit on "Children in Need" saying their 8 year old cooks for them, irons for them and as a result has no life, no friends and rarely gets to go out, meanwhile poor journalism getting it so wrong by suggesting this is sad, this parent needs help,this parent needs more giving to them. No the child needs pulling out of that parents home!  There is no excuse for child labour in Britain, carers can be accessed by any adult with a genuine disability through Social Services Adult Social care team. There are also Direct Payment schemes so you can even advertise and select your own carer.

My son may not be able to understand that I can not bend down to pick him up from the floor when he has hurt himself but he can be rest assured that despite both my husband and I being wonky people we will never, ever expect him to play any part in our illnesses. Like any parent our plans are centred around the best outcome for him, not us, our difficulties are not made into a show in front of him, he thinks it is normal for a dog to pick up the mail and open doors for people. He eats well and does not need to know daddy and I can not open jars of baby food so end up spending a fortune on plastic tub baby food with nice easy plastic lids to pull of using our teeth!

We will take our son to normal children activities such as Cubs and Scouts, we won't be taking him to football because we can not stand for more than one minuet and won't feel it is fair on him not having parental support but if he insists on it we will quietly have a chat with his very sporty Aunt and cousin and ask them to go support him rather than another, mummy and daddy are so different speech so we are going to prevent you doing that. We will throw happy childhood parties, boy do we throw great parties.We will make sure no matter how ill we feel we drive our son to meet friends, to socialise, to attend others parties, to go swimming with other friends etc. Basically this is all going to be an extension on how my husband and I live now, no matter how ill we are we always drive to see friends, laugh with friends, throw parties, organise theatre trips etc.

This will be the first blog that I have written where I air my true opinions of some disabled people. I don't care if it offends, I feel really passionate about child carers both as a disabled parent but also as a Psychologist interested in childhood development.People who use their children as carers should be being watched by Social Services, it is disgusting, it is a form of neglect and should be made illegal in the UK where Child Labour was banned many centuries ago!

So yes my blog is going through transition, I have talked about popper free clothing, car seats endlessly, buggies that fold up easily etc but actually here comes another side of this author mwah ha ha ha haaaaa :oD

The Car seat saga and the Carkoon.

Sunday the 15th of April 2012 I awoke thinking the biggest contraception to disabled parents is the newborn car seat saga, the difficulties of people with poor reach, or poor dexterity has a huge social impact on both parent and child as frankly there are no accessible seats on the market at time of writing for new born babies. By nine months we can all use the fantastic Maxi Cosi Axiss (see previous blogs) and this seat has changed my life since having my son, but could I really say to new disabled parents, that the first eight months of your child's life are likely to involve you and baby in lock down at home? 

Why should I say this to new parents, I want to promote the concept that there are solutions to all aspects of life that do not require an entourage of carers or NHS aids. 

Last year I maxed out on research desperately trying to find a seat I could take my new son out in on my own. I went to the Baby show and tried every seat on each stall. I brought the Maxi Cosi Pebble from one of the patient reps,the pebble was the best out of the 100 I tried. But even this was a ridiculous design with a roll bar that goes across the seat with buttons to press either side of the chair to fold the bar back down which one has to do to get baby out. My mother with patience,quiet middle class lady, always keeping impressions impeccable, tried to put my son in the seat after our visit and she nearly chucked the thing in the bin. My retired father came out despairing at yet another baby equipment item needing his attention to adapt which he refused to do for safety reasons. All done rather publicly and embarrassingly. I decided I just couldn't use any new born seat easily and for 8 months I spent a lonely time with my little boy.  I must have spent in total £1000 just trying to find something to no avail. 

 

I keep abreast of latest developments and Sundays huffing and puffing led me to yet more research on the matter. I bring good news indeed. It would appear someone has had a brain waive! 

The Carkoon is the new car seat on the block. It is not yet in the shops as the seat is still being tested in labs. It is sounding good on paper. 

                                                                     

The Carkoon

The seat boasts amazing life saving kit. After having been in a crash with a lorry at 12 weeks pregnant I know how scared I was at the prospect of  loosing my son then, I always pay the most for the safest seat now as I have no desire to appreciate safety when it is all too late!

The Carkoon has a shield, like an air bag that doesn't go near the babies face, instead it goes over the front of the seat making the child cocooned safely. The shield not only fends of flying debris in a crash but is also fire proof for up to twenty minuets adding further protection to the child. There is a chip installed that activates when the shield is deployed and will call the emergency services giving them a GPS reading of your cars whereabouts. 

That sounds all great but past experience is any massively safe seat always comes with no accessibility. I was excited to read that this is not the case!!!

The Carkoon swivels on its base to face the car door allowing easy access to baby, just like the Maxi Axiss but with the added safety of being on an Isofix base. 

I am yet to see this new seat in action and the bar looming over the seat slightly concerns me as this looks similar in picture to the Pebble bar system. Only time will tell how accessible it is when I have had a play.My son has become a seat connoisseur as we have worked our way through A LOT! 

I am hopeful that isolation for new parents and their new baby will become a thing of the past as finally designers are understanding what makes a good car seat to all parents. 

Loving being a mummy!

Well I can get my son out on my own and as I have a few weeks before my next major surgery I am making the most of it.

We have been to Bristol Zoo, fab fun! Loving the Gorillas, went with a fab husband and fab friend as well as my son. Had picnic in the grounds , all wheelchair/ buggy friendly. Also as a disabled person you can get a friend/ carer ,my arse haha,in for free! Although to be fair we couldn't have managed without friend so credit due to him!

I have to say I love the public, ok ok I know there are some Sun readers out there who hate disabled people, ethnic people, educated public sector workers etc etc but they are the tragic minority. When I am out with my son I guess people see me struggling and always leap to assist me. Yesterday it was Gloucester Tescos that were fabulous. From the trolley chap who personally brought a trolley to me to the lady who not only helped me pack at checkout but also put bags in trolley! To the car park where a chap saw me trying to fold buggy up and put iron the car, he rushed over to help me!

So public thank you, you are a good hearted lot and rather than disabled people whinging it is good for us to thank when people are kind. It is so easy, whilst media hate campaigns against disabled run for us to appreciate that most the public is educated, positive and thoughtful!

I got a sack load of library books, my son must have nearly read most children's books there so time to try a new library out. Of course whilst pushing buggy, lugging books I dropped my purse, can't bend to get it but a five year old girl saw and helped, bless her!

Life is great. Our son poses new challenges now he is a tall, strong and crawling one year old. However my husband and I make a good team and we always outsmart him!

Finally I end this e mail with a recommendation to watch on BBC I player, a programme called "We won't drop the baby" which aired on Sunday the 25th of March. For the first time in a long time this is an actual little bit of genius media reporting rather than the embarrassing drivel on disabled people or depicting them as trolls aka "The Undatables" on ch 4!

We won't drop the baby follows a couple, man and wife both with Cerebral Palsy. They have already had one child who is six in the documentary, a happy an healthy little boy he is too. They want another child and the documentary is centred around the birth of their second and how they carry out normal parenting tasks. We all recognise the exhaustion they show in the film along with many other challenges all disabled parents cope with in their stride, with a smile and without an entorage of carers!

Brilliant and inspirational irrespective of whether you have children or not or are disabled or not. It will only be on Iplayer for a few days so try to catch it.

Off to have fun now. Take care

Carrie x

Sorry

My done list as an appologies for not blogging:

1. Out of county medical specialists.

2. Immune system partying like it is 1999 on every joint.

3. Been offered chemo injections to calm immune system activity, told Dr when I was 8 I hid the oral version of drug in my squirrel pj case. That I was certainly not liking sound of injecting a drug that makes me throw up all day for three days and all I needed was a day to rest but no parent gets that so until is on prescription I will stick with the partying white blood cells thanks!!

4.Got son to baby group and saw another disabled parent as was leaving, felt so nice to not feel I am only one in the county.

5. Shoulder made an ennouous crack when got son in car seat from group, at time thought oh dear now think need plastic shoulders ASAP so hopefully shoulder guy gets to work soon!

6. Party here with friends.

7. Party at friends house.

9. Every one of my fathers 30 something children are not exactly wealthy, can thank baby boomers generation for that according to a uk documentary.Of course my fathers 70th looms and we have been scraping backs of sofas for coins haha to get his present worthy of his fantastic ness as a great Dad. I may not have the body but have good mind and organisation so have sorted it all out for siblings.

10. Scooter fixed so can walk assistant dog! She is smiling again.

11.Granite installed in kitchen.

12. Reading, singing and doing flash cards with son who is getting clingy and cuddly but is healthy, very tall and sturdy so am starting to feel like thumberlina in a land of giants!

I end on a well done Goverment. Not something said often in the UK as frankly I think many of the UK population feel our "leaders" are all a bit bonkers,thick or "a cabinet of millionaires" .However in 2014 a new health department innitiative will be ran out through the uk called "a personal health budget". Basically you will be allocated a sum of which you can decide what your health needs are in your daily lives with chronic illness long term disability. So for example I as a very disabled mummy could have said to my PCT that the only way I can get out without a carer, with my son is by having an accessible car seat. I would justify it to my PCT and say it gets lonely, isolating for me and son if I can't get out and hey presto pct saying yes, money for car seat. This is mega over simplified.

For good advice on the personal budgets please go to the Department of health uk:



I felt so excited by this, it will allow dignity, rather than having to ask for help from others including my arthritic husband. It will open so many doors to me as a mother and as a wife but also to my son as well. I am due to have my usual yearly surgery in April, I have to try build up muscles ready for my new replaced joint to work. I need to go swimming to build muscles up but husband can't go because his arthritis attacks skin as well so need to bribe friend to help me every week, with this budget I could pay her entry to the pool. Fantastic stuff thank you Mr Cameron for having a little thought and showing how a little thought can make huge differences.

Righty ho well things to do, no parent ever stops, equally if we are honest parents, it is one of the most demanding jobs but one of the happiest,most rewarding jobs ever even if the bosses throw tantrums, cry at the word "No" and have you multi tasking like you wouldn't believe!

Enjoy all, keep smiling, life is funnier and happier that way x

P.S is it normal for my one year old son to enjoy "Peppa Pig" haha, I mean it's a cartoon pink pig!?! Haha

A fantastic valentines day.

A heart and a chocolate waiting for me on my pillow when I went to bed, bless.

I finally took my son out on my own on Feb the 14th, a truly lovely way to celebrate Valentines Day, yes that sounds odd I know, I know my husband loves me, I love him, we show that every day in little ways or big, he will buy me a box of chocolates out of the blue, I will cook a cake for him etc. However, to be able to take out the best thing my husband or any one has ever given me in life, my son, on my own was just so lovely I can not put it into words.

Maxi Cosi Axiss,whole seat swivels to face the car door entrance. Available every where,I got mine from  Precious Little Ones.

So off we trotted, first I put him in my super light buggy from Babies R Us (A calypso stroller), wheeled him to the car, got him in his Maxi Axiss all by myself, folded the stroller up and off we went. First stop was the library. I was shaking like a leaf when we parked up,I was so nervous of getting him out of the car and into his buggy with literally no one who knew me any where around, however I unfolded buggy, managed to get him out of the car seat and all was well.



The drawback of the Callypso, it is the only drawback, is that the wheels do not swivel. The easy fold and unfold system of kicking a bar up and down, the light weight ness of it is fantastic. However, by the end of the library visit, I was in agony as I was struggling to lift the buggy with him in it onto the back wheels to keep turning the stroller around corners. So I went to Mothercare to get a new stroller.

Mothercare was useless, a really poor selection of buggies were on display, their lightest weight ones had a ridiculous safety button to press in before you could kick the bar down to unfold or fold the buggy, it was lightweight but no good as my hands could not manage to push the safety button. No staff came to me to help me look at buggies but I could see that most of those on display were big, heavy and lots of buttons to push, levers to pull gadgets to fold up the buggy that my hands couldn't work.

So I went to Argos, I never go to Argos but gosh am I so glad I did and purely because of one excellent sales assistant called Laura S at St Oswalds park in Gloucester. I sighted two potential strollers from the catalogue in store, I explained to her I had arthritis and asked if I could just have a look at them. She was so helpful. Smiley, happy to help, happily undid all the ridiculous packaging each had on them. She showed me how to unfold,then I had a go. She was just so upbeat, just made the looking at both models a joy rather than how some sales people make you feel, like you are a real nuisance or in most cases they completely hide from you, she happily came out with me to the car to help me put the new buggy in, we were smiling at ridiculous complicated buggy designs today etc.

Babystart Pushchair with canopy,swivel wheels,available in pink or black-from Argos-£29.99

 I happily brought one of these brilliant buggies, a "Baby Start" model, there are two from Argos,both as light as the Calypso,easy step on a bar at back to fold buggy out and kick it up to fold it up again system, I went for the £29.99 Baby Start buggy as I felt although it was almost identical to the cheaper £19.99 model it came with a sun shade, looked tougher material,also had a rain cover but above all lovely swivel wheels.
BabyStart Basic pushchair-Argos- no canopy still swivel wheels, £19.99
I brought the buggy ,not just because it had every thing but also because the sales person was a real gem. I have been to John Lewis at Cribbs Causeway Bristol, where I usually shop, no sales person has ever come over to help me! I have been to Mothercare in Gloucester and it has been the same story there. When I see a gem I have decided to publicize it. People deserve recognition when they make a difference for the better for someone else. Laura S from Argos St Oswalds Retail Park, Gloucester is certainly a gem and a reason why I will go back to that Argos again.

I think Britain and its populous is very quick to point out what isn't good, what doesn't work, who is not getting what or who is getting what. Life is far too short to be bitter and sour, I hope I will be able to add many more gems onto my blog, from the high street or as I meet them in my daily life.

Good night x

Safety blog.

Oh I yawn at the mention of health and safety, god I always think of a man with a clipboard in hand, yellow bob the builder hat adorned and speaking in monotone. The whole concept makes me sleep! However I have a one year old who can crawl from the middle of his big bedroom to Daddy's office in 11 seconds! It was time to face facts and start thinking safety gates,plug protectors, corner cushions etc.

Husband and I sat down a few nights ago and had a conversation over what the heck we should do about it all. We were currently taking it turns to follow our son around the house herding him away from unsafe places, objects, dog trying to snooze and so on. It was getting a tad ridiculous. So here are our tried and tested and found and hated and general confusing area of the baby safety world.

• SPRING LOADED SAFETY GATES- simple word- Rubbish! Hard to push open because of the spring, usually have a bar going along the bottom of the gate so if you are wheelchair bound you won't get any further than the gate unless you can pick your chair up, lift it over the gate step etc. 

•  "No trip gate",non spring loaded- great! No step at bottom of gate to go flying over, to struggle over on crutches or a barrier to wheelchairs. Non spring loaded gates work just like a garden gate. There is a lever knob to push down with one hand and push gate through with other hand. I have very arthritic age five year old sized hands, I have little grip or strength in fingers but I could work this style of gate.

• Google your local council to see if they run a free health and safety baby home check.Gloucestershire County Council runs such a scheme. What a fantastic scheme, it basically involves a safety bod coming out to check your house over, discuss safety equipment that you can often buy from them at exceptionally good prices, they will even fit the gates and other equipment for free!!! Your health visitor will be able to give you details of your local council safety check scheme if one is available in your area. This service was especially useful for us two ,creaky parents, as their staff take your difficulties into account when recommending items to you, they have a non trip gate for you to try which is invaluable. It is difficult to find a store that displays gates.However IKEA and John Lewis do.

• You can get easy access playpens which tend to be hexagonal  in shape.The pens come with a non spring loaded gate that swings open meaning no reaching to get your child out is required. There is a very very minute step across the bottom of the gate entrance. It may there for now be ideal for a wheelchair parent however by aged one your child probably would happily just crawl over the small step over if you hold the gate open for him hopefully meaning you can then grab your child once through the entrance of the pen. 

Safe and secure metal playpen from www.amazon.co.uk

BabyDan Baby Den -my favorite pen as for me it has the easiest latch to open. Available from all baby high street/online shops.

• Plug protectors -have to be brought and all of them are tricky in all honesty. The common ones are the two below. The "Clippasafe socket cover" was the easiest for me to use, the other type readily available are flat plastic circles that plug into the empty plug socket. I found the round plastic disks difficult with poor dexterity and strength in my fingers. Neither are ideal for arthritic parents or those with weakness in hands but  they are an absolute must have for your childs safety so you will have to choose between the lesser of two evils.

Clippasafe electrical socket protector, has two buttons either side which you gently push and raise lid up,
available from www.amazon.co.uk

Common plug protectors on market. 

Finally we actually don't have the BabyDan playpen but it is basically the Baby Dan configure gate in hexagon shape, same easy mechanism. We have gone for creating a safe corner on one side of our chimmney breast in our lounge as we felt frankly with an open log fire, flat screen tv, wii, digi box, dog etc there was far too much to safety proof and would end up proofing against my husband and I! So we took a BabyDan configure gate and did the following, it works so well, my son can play, see the television, every thing is protected from his little hands.

Our BabyDan configure gate  set  up,works so well!

Space for our son to move and play. 

Easy pull up latch, very light pulling on the latch bar required to open gate. 

Very tiny little lip across the entrance.

We have completely safety proofed our sons whole bedroom which is a large room. His door entrance has been kitted out with a non trip door gate from the Health and Safety scheme with Gloucester City Council, we have corner protectors which are no problem to pop on corners of drawers,these are available on the high street,we have put flat plug protectors in every plug in his room. He can explore that room entirely on his own, when he is not in his pen area in our lounge we will watch him like a hawk!

It is ridiculous to expect parents with poor dexterity to gate every where, put plug protectors in every plug, fireguard gates that are a fiddle and huge, take up a huge space if you are in a wheelchair you would need to consider that. We will have a gate on our lounge entrance to stop little man getting out and about into the kitchen or any where else down stairs.

TV flat screen straps, available from all retail shops offering baby safety items.

We won't gate every room, we will put flat screen tv belts on our tv to stop him pulling that off. These attach at the wall bracket on the back of your tv and then fix to the wall.  

Ok so I love this stage in my son, as a Psychologist I enjoy the cognition that babies display at this age, I like that he mimics what I say, I told him he was being a cheeky little monkey today, he smiled and said "cheeky". Made me feel all warm inside. I love the fact he wants to read a book more than play with a plastic toy, when I bring his pile of books into him in the morning to read with him he reaches out to the pile. However with ever developing cognition comes a desire to explore and BOY IS IT EXHAUSTING haha. 

To all those that think work is strenuous,please! Try waking at 6am and straight into action, no cups of tea to wake up, no coming around from your sleep slowly or getting dressed straight away, no sitting still until the little darling goes to bed at night where by you try to catch up with household chores, my husband tries to paint, I try to shoot off a blog,walk dog,load dishwasher, hoover,put baby toys away. Mayhem indeed but would not change it for the world and I guess who in reality, at work, has a boss that smiles, giggles with them, wants a cuddle and enjoys being with you twenty four seven!?! My husband, son and dog mean the world to me, would not change a thing about it.