Bullying and children with disabled parents,

My son is the happiest little boy I have known. My parents have always said that I was the happiest out of all my siblings despite obviously very hot and painful joints from right when I was, well my sons age.

As it stands at the moment, I open a teddy bear book and he giggles at the grinning bear, he giggles at the word banana he roars with laughter at tickles.He adores learning, he loves his French picture dictionary and knows some French words and English words for a few foods. He isn't walking and that is not due to two parents unable to make him do standing activities,no he is not ill, no he feels why keep a dog and bark, literally, why walk to something when if he points to something my assistant dog or a parent will get it and of course the doggy getting something is another excuse to chuckle! There is not one activity we do with him that bores him, he loves looking at and trying every thing.

This is not an opportunity to boast, I am explaining who my son is because I would be devastated if he lost this personality because someone's child was bullying him at school, if he lost his quick thinking because he was feeling so down.

This is every nice parents fear for their nice child. Lovely parents seek to find their child three nice peoples schools well before school entry time to try and avoid proximity with ferrel kids however nowadays there are no great catchment areas, we all think there are, so,show deluded by the sixties generation that is our parents that good catchment still exists, but does that really make any difference to the child's perception of school, heck Bob Diamond is a scallywag and ex CEO for Barclays bank,I have no doubt he lived in a great catchment area! It is in my opinion that money does not always equal moralistic, compassionate and considerate adults or their offspring. I don't know Bob Diamonds children, I am sure they are all pleasant but money does not equate to good ethics or kind children.

There is not a parent in this land which will not share the common ground of concern about bullying in schools both at primary and secondary school level and now even via social networking. However am I right to have perhaps more concern than my well counterparts about my son being bullied because of me?

I hear my sister in my ear going "ahh don't worry Caro, children don't see disability as adults do" yeah I am not convinced that nasty children will still not use my difference to be very unkind to Christopher. I have no idea what strategies to adopt at this stage, I know I am thinking way too early about this and one such strategy will be to ensure he goes to a play school, again a nice play school, with nice children in it hopefully who will get used to seeing me, my assistant dog and him at play school. These same children will hopefully get the same school allocated and Christopher will already have an army of little children ready to stand up for him with the odd stray child at his school feels like picking on him.

So I have been on Mumsnet today to see if other parents with disabilities have been in this situation or how they intend to deal with it or have dealt with it, hopefully I can add to this blog later thanks to their thoughts.

Finally, here is a classic example of bullying nowadays, brace yourselves new mummies! My sister, a doctor with her doctor boyfriend, lives in a nice catchment area for a nice primary school, you would think all children would be nice there, WRONG! On Thursday, my eight year old nephew was being picked on for being a "virgin" by older boys at his junior school!! WHAT THE F$#K !?! Heck there isn't much they can pick on my nephew about,he is brilliant at sport, popular, very attractive, big blue eyes, blonde hair and tall, I guess when the chips are down what is there to be unkind about, heck why not bully a little boy about not having sex! As disabled parents, we chose to have our lovely children and they will no doubt go on to make fantastic adults but we chose to bring them into the world and it seems to me we should pre plan for bullying because they are perhaps left more exposed to unkindness at school than children with well parents.

Ankle replacement the endurance test!

On the 18th of June I had my left ankle replaced. This was done by the top international surgeon for ankle replacements,Mr Winson, in Southmead hospital, Bristol.

I had my right ankle replaced in 2005.

I knew from the previous ankle replacement what an endurance test this would be but back then I was with my ex. I had been with him for 7 years and only met his parents after six years, this ex never stayed over for more than a weekend each week even though he lived 15 mins away. So I had no help except for carers who would come in to help me dress in the morning around 10.30am, make me a sandwitch at lunch and help me get ready for bed at 7.30pm. That was it.

So when this strange mother of my ex walked in to my house without even knocking at 9am one morning, I was still not dressed because my carer hadn't arrived,the reader will understand how embarrassed I was and how undignified I felt when I had only met this woman twice after several years of dating her son and they were a judgemental family!I was so upset when there she was in my lounge sitting waiting for me to somehow entertain her. The whole family were useless at conversation. Of course not only was I mortified, I was angry and irritated that I was expected to do the talking when I was in pain and had large amounts of morphine to get me through the night.

I dumped the ex six weeks into the recovery of this operation really because not only was he hardly ever there as a boyfriend, he rarely supported me and I was rarely good enough for him and when he couldn't respect my request that he asked his mum to not just barge in again as I felt humiliated, I had had enough! Enough of trying to live up to his and his wacky family's expectations! I got through the rest of the endurance test that the ankle replacement is, 12 weeks of being in a plaster and unable to walk or move much at all,on my own but I was pretty much on my own any way so it was really business as usual.

So when this recent operation came around I was dreading it! However I needn't have.

My husband has taken it all in his stride. He has been there by my side, he even does his art sat beside me in the evening. He looks after our son like a trooper, he helps me to the loo, makes our tea, makes the lunch, feeds our son, changes our son, plays making tents with our son. He still has enough energy,just,despite every joint of his burning with arthritis pain, to make me smile with a joke or his chit chat. Sure I do what I can for our toddler, I sing songs, we read umpteen books, I am teaching him French along with his English words, we play peekaboo, we cuddle but all activities are done from my bed. I feel so sad when my son wants me to follow him into the tent and I just can't or when he bumps his head and I can't get to him to cuddle him and make it alright but we manage,we cope.

It is an endurance test, we are all basically in lock down at home, I can not risk jolting my already thin ankles which will keep me in plaster even longer.We can't go anywhere at the moment. My husband needs to get on with his art work as he hopes to exhibit again soon but he is not only caring for my son but me as well. I feel awful that I can not help more with housework or child care but we all muddle through every day and we all still smile.

Thank god for the iPad as that has opened up so many fun activities for Christopher to do with me sat on the bed, I really would put this gadget as a top piece of equipment on any disabled parents list.

Of course then there is Yasmin, my assistant dog, she is being walked at the moment by my dad and fortunately she is as lovely and cuddly as ever, helping pick up things for my son around the room. She has an understanding,unlike pet dogs, that we can't have max fun every day, she knows she works for me as even when I open the French windows she won't leave me, even if I say "go play" and shut French windows she sticks her nose against the class and stares as if to say "I'm going nowhere lady!". I didn't have my dog when with the ex as he was allergic to dogs, as soon as he went I applied for a Canine Partner dog,an excellent trade.

Ankle replacements are a real endurance test! I say to any disabled parent only get this operation done if your ankle has already become life limiting (if you are strong and well otherwise it will be a doss because you will be able to hop and have good arms for crutches) you need to be in a very tight, strong relationship with a good support system in place for helping with your child. It is very do able though with the right people and who knows what I will be able to do when I am out of plaster, first thing I am going to do though is make my husband rest, cook him a lovely meal and play tents with my son!

Political

Husbands art work sometimes done via using his mouth!

I don't often get political publicly but it seems every one is doing so these days, we all seem to have a political opinion on every ones lives so heck, may as well join them as can't beat them. 

On Mumsnet yesterday, they had a guest blogger in the name of Louise Mensch, a Conservative member of parliament. She was discussing the merits of Social Networking and the impact it has had on the lives of women around the world.

To this I say hear hear! I am in agreement ,for once, with a Conservative MP! However, as is always the case, the Conservative mob think little of emotional connection and instead only money talks in their circle. So of course she was highlighting one of the founders of Lastminuet. com, a woman, being an idol to all ladies who know how to go online and use social networking. Gosh this isn't the 1950s my dear, we all are aware! Often women go online to formulate intellectual discussion and share thoughts and feelings. To feel comradeship, we are all capable of going online, we don't need a patronizing "girl power" speeches thanks. What she fails to sight because money talks is that there are doors opening to the minority groups of women, not just for the multi million business owner ladies amongst us. Social networking and blogging gives those minority groups a safe place to discuss issues that affect them and to seek advice from those who understand, share feelings and thoughts on how to tackle issues.  

Then of course lets not forget the men, again this is not the 1950s, women are becoming the higher owners slowly.On the occasions my dad has helped me go to Bounce and Rhyme with my son ,I am heartened to see men attending the group with their little ones. So there is a forming group of men who now are the ones who stay at home and do child rearing, unfortunately the outside world is still very "mother and baby" orientated so you can imagine these guys need social networking, blogging to make them feel part of the world still. 

Above all the online community opens vast doors for severely disabled people and this, Louise, is where the Conservative party should be investing their thoughts in terms of up grading the work place to incorporate the use of social networking, the concept of men and women having to commute onto a crowded train to sit in an office and rattle of emails or have a few meetings is so old fashioned. With the rise of facetime, skype,email and The Cloud why are we still insisting that in order to "work" we have to all be sat in an office?? If work came to the disabled person, ie. they can work from home without need to go into an office they are likely to get many more into work. I know many a bright disabled person who has an excellent brain, many of them studied with the Open University for their degrees because the OU have been the pioneers of harvesting the power of online to eliminate the need for students to attend lectures, all exams, essays,lectures are done at home. Equally many of us need help getting on and off a bog!

Then there is the environmental issue of thousands commuting to big cities every day, why, if aliens were watching this you can imagine them having a good old laugh. We have this technology but errrr no one seems to be using it as a tool for their work force. Why? Are corporations seeing the internet capabilities as a toy perhaps and missing out on a real trick to stop wasting employees time with commuting and get more work done via their homes because they don't have to travel for an hour.  

Finally all the single parents out there who want to work but can not afford ridiculous child care fees or the cost of a car or train tickets to commute to work, then my modern vision of work would throw open so many opportunities for this group as well. 

Perhaps one aspect going for old fashioned working method is the face to face contact we have with other humans, this obviously is enriching but many disabled people or single parents don't even get off the starting run to experience this because if we need help on and off the loo etc then we are unlikely to even be able to ever set foot in an office, most disabled people would rather feel productive from their bed than feel useless because they can't fulfill an old fashioned need of commuting and working in an office. 

Something to think about the Conservative party, I appreciate you guys are firefighting at the moment, getting those with a sore big toe back into work but perhaps when you have done this you can find time to make work work for those that appreciate their bodies are a car crash but really want the dignity of using their minds. 

Here are some pictures my husband has done with his deformed hands it takes him months per picture but look at what is out there not being utilised! 

Marks black and white art work.

Mark did our own copy of the classic, Night before Christmas for our little boy.

View from below my foot!

Check me out with my swanky iPad !!! An item we never usually fork out for but the boredom of being completely bed bound, I can't even get about on crutches,we have one toddler who requires extensive menus of entertainment hardly accessible to me right now, the iPad seemed the only solution! Honest it was the only solution!!!!

So here I am, my left ankle was operated on on the 18th of June, due to pregnancy nearly every joint hanging on over the years suddenly decided to give up the ghost! So we start from the bottom and work our way up in terms of what jobs need doing on my joints. The ankle is first up as takes months before I am allowed to get up on it so we felt that needed to be got out of the way whilst our son is too young to remember it. I have an attractive purple plaster on to match my assistant dogs purple "Canine Partner" jacket. Well my dog being a lady and I need to stick together in our man household and ensure colour co ordination occurs at all times, we lead by example to our chaps in the house!


I am due a replaced elbow, a new shoulder, two new knees and might see if they can sling in a new wrist for being such a great customer!

So my son and I are back to spending classic days on a bed together, reading from ladybird app on the iPad, doing flash cards for toddlers on the iPad, singing songs with nursery rhymes from ...you guessed it, an iPad app. the apple slogan is "there's an app for that" is not wrong. I don't have to leave my bed, any time my son gets bored there is always an app to be had.

With the rise of technology there is yet another whole new world out there to utilise for disabled parents. Nearly all parents have days where they feel exhausted but imagine if you really can not leave your bed or have a choice to just nip out with baby, this is a reality for disabled parents. I can honestly say you will not go far wrong adding a tablet onto your list as essential baby equipment along with the fantastic "Bumbo" seat, "Maxi Cosi Axis" car seat etc.

Top apps for babies and toddlers:

e baby flash cards (450 words with pictures and number cards conplete with sound affects for ambulance,motorbike,elephant etc). Free app!

Ladybird classic me books - If you were brought up on those "Read it yourself" fairy tale books or "Ladybird Farm talk about" you will love this app. Great for babies and toddlers with easy descriptions and lovely illustrations which are interactive. First book is free but cost £1.49 per ladybird book if you want to have a collection going.

Old McDonalds farm and Twinkle star, two lovely apps full of games for toddlers, bright cheerful large farm characters, lovely songs, peekaboo games etc. Free but to open full game cost 69p

Magic town- A fabulous app that already gives away ten free toddler and children's books without paying a dime! The Magic town itself is a bright world full of odd looking happy animals and characters that once you click on they go off and get your little reader a book to read. Brilliant app, can not rate it high enough!


For non tech parents top activity suggestions from a bed:

Teach baby French with the Collins First French Picture Dictionary, illustrated by Nick Sharatt.Galt cotton reel threading

Saucepan,spoons a wood and metal and plastic one,plastic beaker or cup,teddy and pretend are cooking and feeding teddy

A friend of mine gave me a brilliant book called Brain games for babies,toddlers and twos by Jackie Silberg

Bubble mixture and wand, if your child can crawl make sure your bedroom door is shut and helper removes any objects on the floor and blow bubbles, enjoy the giggles as they chase bubbles!


I have not been on here for a while, the reason for this is purely because my son is now 18 months old! It makes no difference if you are disabled or not the fact remains the older the child gets the more mischief they can get up to and you really barely have time to nip to the loo let alone ponder issues of the day. Christopher still is not walking and I wonder if this is because when his father and I take a step our faces look pained even if we are thinking we hid pain! Equally the simple truth is every child does what they can in their own time, Christoher is happy and healthy, he says loads of words, loves numbers and does stand up clinging onto sofas or any other sturdy surface. We are not too worried really as his intellectual development is good and unlike me at 15 months screaming in pain every time I stood up, he grins ear to ear and babbles so I know he is happy and enjoying life and that is what matters to us :)

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.