A new me!!! Gok Wan eat yer heart out!

Have you noticed the new me yet?? Well? Does this avatar make my bum look big? No? Good. The decision to have a change of image has been a long time coming. Its something I have been considering for a quite a while but always put off because I was worried that the online community just wouldn't recognise me. The jontybabe pic was just so me! But the picture was something I had found after trawling google and I really wanted a picture that I had some input into so I found one of those dinky 'create your own avatar' sites and hey presto! This is me!

 I think the avatar actually says a lot about who I am.

Note the huge bag to carry a good book in and other essentials I might need! The glass of wine you all know I absolutely love! And, the pink laptop to do all my writing and other online stuff. I do actually own a pink laptop! I dress very similar too and am never without a good pair of jeans and a pink top!

As everyone knows, I value my anonymity fiercely. Not because I am ashamed by my family or embarrassed by my writing, but because given my job as a social worker I need to protect my family and not give clients any ammunition they could use against me. Don't get me wrong, not all my clients are like this and I work with some very nice people. However, there are those that are not enamoured by social services!

This much valued anonymity was lost however this week and I felt sick. Luckily however my super secret identity was sussed by a mummy from my daughter's school and one I really like, and not a client. I had joined a special needs facebook page for parents. Now, usually when I do this I check whether theres any other members there that I might know or who might know me. I didn't this time! Dohhhh!!!! I posted a question on that page and an identical question on the school facebook page, of which she is also a member. It didn't take rocket science to figure it out! However, she was very discreet and sent me a private message asking me if I was jontybabe. I can't tell you how sick I felt! There was no point in denying it so I told her that yes I was but asked her to keep it to herself. She agreed and I am just hoping she will because invariably as always happens, someone who is a friend of someone else's might end up as a client! As we like to say in work..........all roads lead back to social services. Eventually! I don't think she has discovered the blog but we will wait and see.  (waves to 'M' just in case she has)!

And so, there you have it. I hope you all like the new me. I'd welcome all comments about it - good or bad!

Epilepsy awareness - our journey to diagnosis

This post has been written in conjunction with Special Saturday and this weekend we are trying to raise awareness about EPILEPSY and to share our experiences. So, here's mine!

Those regular readers of the blog will know that FD suffers from epilepsy and has done for a number of years. Getting a diagnosis was a long and arduous journey for her and us!

About a year after I split up from FD's father (the sperm donor) FD started to exhibit some strange behaviour, mainly vomiting in her sleep. She would do this almost every single night. I put the vomiting down to her being affected by the divorce of her parents. An anxiety thing I suppose. FD was not a great sleeper but during the times after she had vomited she used to go into a really deep deep sleep. The only time I had known she had vomited was when I went to check on her on my way up to bed. There'd she be, lying in her own vomit. I was able to lift her out of bed, bath her and change her bedding, all without her waking up or at best, waking but being very groggy.

Lifting a child out of a high sleeper bunk bed was no easy task. I had to throw her over my shoulder like a fire fighter and climb down the ladder with her. I very quickly got rid of that bed. Because of the vomiting it was very impractical and very difficult to change bedding when halfway up a ladder. The bed had seemed like a good idea at the time because I had been forced to sell my marital home after my divorce and move into a tiny little house. The bedrooms were the size of  shoeboxes and so in an effort to maximise space, I had bought FD the bed because it had storage underneath it and a little cubby hole she could go to when she was having a meltdown. Unfortunately, the bed did not last long!

On the rare occasions when FD stayed in her paternal grandparents house (when her father was living there) she vomited there too. I used to blame her father for feeding her too much junk food when he had her. Particularly if we'd had a period of no vomiting. I failed to see the connection. Looking farther back, I now recognise that there were some signs when she was a toddler. She would vomit if she was upset or scared.

FD underwent a number of tests, including a Barium Meal test which was horrible for her, but the doctors thought her vomiting might be as the result of a tummy problem.. I happened to mention to someone I knew (I can't remember who now) that FD vomited a lot at night and they suggested I have her tested for nocturnal seizures. I hadn't considered epilepsy. So, a referral was made for FD to have a Sleep Deprived EEG. This is where FD was kept awake all night and brought to the hospital for the test the following morning. She had electrodes placed on her head and was put into a darkened room and allowed to doze off. Her brain activity was then monitored. She had to undergo two of these. The day of the second test was an interesting one. Because I had been up all night keeping FD awake I felt too unsafe to drive so I asked OH to drive us to the hospital. As OH left us in at the hospital entrance and then had to go to work, FD looked completely dazed and her eyes began to roll. She then vomited all over me and all over my handbag. My mobile phone was in my bag and because of the vomit I couldn't get the sodding phone out of the bag. We went into the hospital and cleaned up as best we could. FD had her EEG and abnormal brain activity registered immediately. It seemed she had had a seizure and was having another, albeit more subtle one whilst she was dozing. It also transpired that the vague periods she had were in fact absences, a form of seizure.

Once FD had been given a diagnosis of epilepsy she was referred to a Neurologist to have it managed properly. She was put on medication called Epilim. Unfortunately this medication was not successful as a side effect was that FD's hair began to fall out in huge clumps. At times it looked like we had a shaggy dog in the house because we had to spend long periods of time hoovering up hair off the carpet! So much so at times that it clogged up the hoover! So, her medication has changed to Lamictal and this has proven quite successful. We still have breakthrough seizures and absences but not to the same extent we used to. The night time vomiting is a rarity now, although does occasionally happen.

I suppose, like many people I was very naive when it came to epilepsy. I always thought it was a condition that brought about the the type of seizures where a person fell onto the ground and fitted. But, its not always like that. It can be more subtle and we have been lucky that FD has never had one of these Tonic seizures although she has fitted quite severely once or twice. Luckily the first time this happened, she was in hospital! It was not an easy thing to watch.

Epilepsy can come in many forms. FD's seizures can be very subtle and if you don't know what you are looking for you could almost miss one. Sometimes she simply wobbles for a few seconds or is unsteady on her feet for a prolonged period throughout the day and has to sit down. Other times she has an absence which can last for a few seconds. Her eyes sometimes roll. The longest one of these absences has lasted is about 30 seconds. Sometimes she can become quite disorientated and confused. Now and again she gets a sign that she is just about to have a seizure in the form of a little pain in her tummy. Usually however when she gets this pain it is followed by a seizure accompanied by vomit! Eurgh! The difficulty with the vomiting is that when FD is having a seizure she just wants to lie down, even when she is vomiting. She tries to hid her face when she is vomiting and so obviously I worry constantly about her choking. Sometimes, just before a seizure, FD will get extremely aggressive. Once she has had a seizure she will be calm again. If she has a 'wobbly one' as we call it, she usually gets really tired and wants to sleep. Once she wakes up she's absolutely fine again.

The unfortunate thing about epilepsy is that once a child hits puberty the seizures can be more common and medications need to be adjusted accordingly, as was the case with FD. However, despite all of these things FD is not too badly affected by the fact she has epilepsy. Sometimes we have days were she just isn't herself and you just know that there's a seizure imminent.It doesn't impact too much on the things she wants to do, apart from on one ocassion when she was due to compete in a big important Special Olympics event and she took a bad seizure and had to pull out of the event. On the days I feel she is wobbly we might have to cancel what we had planned, particulary if its horse riding, but we have learned to cope as best we can. FD does hate taking her medication and when she is having an 'off' day she will refuse point blank to take her meds. There can often be  triggers that would result in a seizure, such as tiredness, hunger and anxiety. Coming up to FD's operation which will hopefully be happening in the next few months, I am of course anxious about how the epilepsy will manifest itself during this stressful time for FD but I am confident that the medical professionals will have it all under control.

Epilepsy does impact on a person's life, no matter how well managed it is. Its always something thats there, hovering in the background, waiting to make an appearance. Its something that all family members need to be aware of and have the skills to be able to cope with a seizure should the need arise. There's no denying that it can be a frightening experience at times. This is why its important to raise awareness of the condition so those with epilepsy can be supported. I hope this blog post has been informative.

If you wish to find out more about epilepsy and need some support around the condition then please check out.......

Epilepsy Action site

Versatile Blogger award............Moi?

I am very honoured to have been awarded a Versatile Blogger award by the very lovely Linn Halton . Thank you so much Linn. I was really chuffed to bits to have been chosen to take part in this. As Linn states on her blog...............

The rules of the award are:
1. Thank and link back to the person who gave you the award (done)

2. Share seven things about yourself (see below)

3. Send it onto fifteen other bloggers you appreciate and let them know you have awarded it to them (see below)

So, here I go! I really am struggling to find anything semi interesting to say about myself without boring you all to death but I'm game for anything! Some of you will probably know most of this stuff.

1. I am a vegetarian - after watching a documentary about an abattoir when I was aged 15 I never ate meat again! I am 41 now and have never strayed off the vegetarian path. I don't eat fish either. My mantra is.........'never eat it if its got a face'! I don't impose my vegetarianism on my family and will happily cook meat for them. When I was a student I was so broke I took a job working behind the meat counter in a supermarket!

2. I am afraid of the dark! This is a great source of amusement amongst my family. I have an app on my iphone which is a virtual candle so that if I am staying overnight somewhere that is not home I have my virtual candle lit all night!

3. I have a ghost. Well an apparition. My husband of course does not believe me but on some occasions I waken up to see a tall man standing in the corner of the room. I can never see his face but I know he had a beard and reddish coloured hair. He sometimes comes over to the bed and leans on my chest until I can't breathe. Then he leaves. I have been known to run out of the room screaming my head off. My husband says its just a vivid dream but it recurs regularly and scares the crap clean out of me!

4. My husband and I have been married for almost 5 years. We have both been married before and when we split from our first spouses we were a great support to one another, eventually becoming best friends. This of course progressed to 'friends with benefits' until we both fell for each other! Not sure if that's romantic or not!

5. I fell into a duck pond when I was 2 years old. I was wearing a fur coat and boots and sunk to the bottom. My mum had to jump in and rescue me. When she got me out of the water a lady who was also at the pond with a little girl the same age as me offered my mum the new clothes she had just bought her daughter so that I could get out of my wet things. Many years later my mum introduced me to the little girl and we still see each other to this day and smile knowingly when we see each other.

6. I once posed as a milk maid along with my sister for a publicity feature run by the local council. We looked totally ridiculous but it was paid work. The photographer later took me to one side and offered me some  'interesting other photography work' for a hefty fee! Needless to say I turned him down!

7. A couple of years ago I took pole dancing lessons. It nearly sodding killed me! I ended up with so many bruises and was so sore after every class that my work mates had to raise my computer chair at my desk as high as it could go because I had trouble sitting down!

Ok! Phew! That was difficult!!!! I'm exhausted now! So, now to pass the award onto more victims bloggers! Please don't feel you have to do this. Its just a bit of fun so no pressure. The lucky 15 bloggers I love (in no particular order) are:

1. Wendy Hirst

2. Pauline Barclay

3. Kathryn Brown

4. Nikki Bywater

5. Jane Danzi

6. Vander Browning

7. stephc007

8. Janice Horton

9. Jane Gregory

10. Niamh Clune

11. Candi O'Reilly

12. Katie Kitchen

13. Petra Rovere

14. Scottish Mum

15. Chris Longmuir

odd socks and easter eggs!

One of the main areas of difficulty we have with FD is her propensity to hoard! Children on the Spectrum often hoard collections of things as a source of comfort. Its something they can control outside of the uncomfortable social interactions they find so difficult. I suppose its a form of comfort to them. When FD was very young she collected hundreds upon hundreds of toy cars which she lined up around the living room. We all had to watch where we walked for fear of accidently moving one of them. Everywhere I looked there were cars! The house resembled a mini car lot! Thankfully, after a number of years she came away from this and her collections and hoarding took on different forms.

As I think I have blogged about before, FD will often keep presents unopened because she likes the packaging or the gift wrap and doesn't want to destroy it. I find it very frustrating as I may have spent weeks trying to compile a present list for her at Christmas time because she finds it impossible to decided what she actually wants for Christmas and likes me to surprise her! Imagine how fed up I get when she doesn't open half of the gifts!

So, every once in a while we have a bit of a clear out. I used to undertake this mammoth job when FD was at school. However, this just created untold problems with FD going into full blown meltdown when she came home to find her belongings moved or no longer there. I couldn't even change her bedding because ultimately I could not put her cuddly toys back in the right place!!! So, after a lot of meltdowns, screaming, shouting and tears (mostly mine) and copious amounts of wine (definitely mine!) I soon cottoned on that if I was ever to achieve some sort of proper living space for FD in her room, in had to be done with her co-operation.

 Now, those of you with children on the Spectrum will know that sometimes being able to achieve this is harder than getting a rocket to the moon! But, it is achievable . Just! Experience, both personal and professional has taught me that children on the Spectrum do need some sort of order within their lives to keep them calm and reduce anxiety levels. So, despite the hoarding, this is a form of order for the child or young person. An extremely untidy room or house will make FD anxious. We also learned very quickly that painting her bedroom very bright, vivid colours also created sensory overload. So, the bubblegum pink paint had to go!

So, today we undertook the joyous task of the clear out today! The task today was hoping to achieve two things. Firstly to create a bit more space, and secondly to find a missing library book.  First things first was a clear out of old clothes. FD loves to hold on to items of clothing that does not fit her. She hauled out of her chest of drawers clothes aged 9-10! She is 13! During the last clear out I had conceded that she could hold onto a few of these too small items as a compromise for throwing out lots of other items. Now it was time to move forward and finally dispose of them. Of course, not before she insisted on proving to me that I was wrong and that they fitted her perfectly. Cue 20 minutes trying to get her head out of a polo neck jumper that would only have fitted a tiny pot bellied pig! But not my daughter with the 5ft 5inch body and big head! I thought at one point that I was going to have to cut her out of the blasted thing! She began to wail and I began to wish I had a glass of wine and some maltesers! Eventually, her head popped out, face red and ears sore from all the tugging! She conceded that the jumper did in fact not fit.  Halleluiah! We have closure on the polo neck!

And, on it went for a number of hours. She kept trying on clothes, kept getting stuck in them because they were too small. I kept having to rescue her from the clothes which only acted as a strait jacket. And she grudgingly gave in and chucked each item into the bag for recycling! I was winning!!!!! yay!!!!!!! Or was I?

Next, we tackled her wardrobe only to find lots of things she had hidden in the back of it! Easter eggs for one! I mean for goodness sake its almost Easter again! Some looked like they were ready to be used as a freakish lab experiment while others were actually still in date to be used to make buns with! And don't even get me started on the sodding empty packaging that once held Easter eggs but was probably far too pretty to throw out! I should also mention Christmas selection boxes and a bag of chocolate coins! Next, there was the huge bag of odd socks that never stood a chance of being reunited with their mate! Sock heaven was obviously pretty full up right now! Why was she keeping the socks? Well, despite her need to have calm and some form of order, she doesn't mind wearing odd socks! Its good luck apparently! They just had to go!! After some bribery with the promise of getting new socks next weekend, she allowed me to chuck the odds!

So, 4 binbags later we were exhausted and still not finished. Throughout this purging process did we manage to find the long lost library book?  Did we heck!!!! Thats a challenge for next time! I'm not sure which one of us has been left the most traumatised. FD because she has had to get rid of some of her favourite items and still didn't find the elusive book. Or me because I know we have to tackle the rest of her room next weekend. There's the 30 empty perfume bottles, the collection of pencil cases, the mountain of purses and untold number of too small shoes! I'm frightened to look inside the storage chest in her room. She probably has a whole colony of pygmies in there! Nothing is impossible in this house!

Our hospital journey - crack open the champers!!!

Just a quick post. Those regular followers of my blog will know that my daughter has been going through a pretty tough time lately. We've had the awful worry of waiting for blood test results and the fear that she had something very serious and life threatening wrong with her.

Well, on Tuesday we got the wonderful news that her blood test results did not show anything of any concern! You can only imagine the relief and joy we have felt at this wonderful news. When I received a phone call from the hospital everything stood still. I held my breath as the doctor spoke and I couldn't stop shaking. I was in the office at work when the call came. There was only one of my colleagues there at the time. When the good news came through I ran through the entire building telling everyone I saw! I'm pretty sure the entire social work department now thinks I am a basket case! But I don't care! Later on that day I had the worst day in work and through it all I smiled. Even when I didn't get home until 10pm after being on the road for hours!!!

So, where are we now? There is no explanation for why FD has elevated B12 levels in her blood. It seems she is one of those rare people who overproduces but its not linked to anything serious. So, my husband has been in contact with FD's surgeon and hopefully her spinal surgery can go ahead in the next month or two. We just have to sit tight and wait for a date. But, I suppose the purpose of this blog is just to thank all who offered me so much support lately. You are all truly wonderful and special people! Thank you all so much. xxxx

Ipads are taking over the world!

This post is written in conjunction with the SPECIAL SATURDAY theme for this week - technology! Our very special children often require assistance to help them communicate. Before the days when technology had really and truly kicked in and began ruling the world, our children used communication boards, makaton etc. Of course they still do but now we are lucky enough to have great technology at our finger tips. I suppose the best and most useful piece of equipment we have is our ipad. FD loves that piece of cold hard steel more than she loves me!!!

 To be perfectly honest, the ipad was originally bought for me. However, FD has claimed it as her own! I have to sneak some time on it although to be truthful I don't much like the sodding thing! I like to hear the clickety click of a keyboard. I don't like trying to type on a touchscreen. It just feels alien to me. Before our ipad came to live with us FD had been allowed some time on the house computer. But, unfortunately, despite our best efforts at putting in parental controls etc she always managed to land herself in some sort of trouble online. Examples of this are -

• Ending up on the FHM website looking for photos of Cheryl Cole - what can I say! The child has no flaming taste in music!
• Getting kicked off Club Penguin for arguing online with another member! - I hung my head in shame over this one for days!
• Ebay - I stupidly left myself logged into my account and FD very thoughtfully bought a car - £3000!!! Once my heart had restarted from the shock we managed to convince the seller that our daughter didn't mean to buy the car even though there was a big button onscreen that said BUY IT NOW and was just screaming out to be clicked on!

So, despite our best efforts to protect FD online, we did sometimes slip up! Our fault entirely. Not hers. Although, threatening to rip the head of someones penguin on the Club Penguin site was probably not a good move on her part! However, the introduction of the ipad appears to have made things easier. All FD has to do is to tap an App. Obviously we have downloaded only the most relevant for her so that is all she uses it for. We had been hoping to introduce lots of really good educational apps. Didn't really work out that way! FD's favourite Apps are all the ones that allow her to look for properties for sale. She will spend ages having a good old nosey at the mansions for sale. She particularly likes the ones with swimming pools and stables! Expensive tastes like her mother! She loves the Apps that allow her to have a look at whats happening all over the world via CCTV cameras. She will spend hours watching people skiing in Italy or some dude milking cows in Albania! Yes you heard it here first - there is cow cam! FD finds it difficult mixing in social situations but is fascinated by other people's interactions with one another and I think this is why she is so interested in this App. She also has lots of games Apps which allow her to build beauty parlours, farms and a fair ground. She loves Farmville and anything animal related.

The ipad has also become a good bargaining tool in our house - 'STOP SCREAMING OR THE IPAD GETS IT'! Sometimes works! Out of all FD's gadgets, and she has many believe me, the ipad is the one that she adores the most. She always has it tucked under her arm and is very protective of it. At first I was concerned that spending so much time on the ipad would somehow affect how FD interacts with her family. I thought she would be so engrossed in it that she wouldn't make any effort to communicate with us. However, it appears to have had the opposite effect as she wants to talk about what she is doing on the ipad and asks for help with certain tasks. Sometimes she talks a little too much and shoves the thing under your nose to look at the latest property on the market. This isn't ordinarily a problem unless you happen to be sitting on the toilet or standing in the shower and she has the sodding thing pressed up against the shower door!

I suppose theres always going to be mixed reviews as to whether our children spend too much time using technology rather than socialising. For our special needs children, the wonderful technological devices we have introduced them to can teach our children many things and for kids who struggle in social situations, it seems that the 21st Century is providing more opportunities for our children to learn through computers etc.and have a common theme to talk about to other children. And, often these devices help our kids to relax. There does however have to be a healthy balance. The ipads and computers can't be a substitute for good old human interaction or as a way to keep our children quiet. Nothing beats the love of a parent, a hug from someone special or a good old bedtime story. The big old lump of metal my daughter loves so much will never be able to make her a hot chocolate the way I do!



The hospital journey contines.......Pass me the good drugs and chocolate!

Today FD had an anaesthetic assessment at the hospital. She was supposed to be having her operation next week but that has all been put on hold because of the continuing problem with her blood. We have another appointment on Friday for further tests in relation to this. However, the anaesthetic assessment went ahead today as planned.

Our appointment was first thing this morning so we drove up the road at breakneck speed to ensure we would make it on time. FD was initially quite apprehensive about the appointment but managed to contain an imminent meltdown. We sang a few songs in the car journey which took us an hour in rush hour traffic. She complained I sounded like I was dying because my singing was so bad! At one point during the car journey she got very excited and started pointing at the car beside us and shouted 'THERE'S JESUS'!!! She scared me half to death! She kept shouting, 'JESUS IS DRIVING THAT CAR! YOU NEVER TOLD ME JESUS COULD DRIVE!! AND HE'S WEARING A SUIT'!!!

 Do you know how difficult it is trying not to crash the car when you daughter is telling you she can see Jesus! When we managed to stop at a red traffic light I was able to find out just what exactly she was getting so excited about. Beside us in a beat up old Mini was a guy with very long hair and a huge big long beard! He looked like Jesus in a suit! FD was beside herself with excitement and this managed to keep her occupied the rest of the car journey. The bearded gentlemen saw us looking at him through the car window and gave a knowing nod. I guess he got the mistaken identity thing a lot!

Anyway we arrived at the hospital with just minutes to spare before our appointment and screeched into the car park like Stirling Moss! Our appointment was to take place in the Paediatric Intensive care unit where FD will be spending the first couple of days after her operation. When we arrived onto the unit we were greeted by our anaesthetist Dr C. And I instantly fell in love! He was a huge bear of a man from Nigeria. I loved his voice! I loved his manner! I loved the fact that he was a true gentleman! He was fantastic with FD and treated her with the utmost care and respect. He explained everything he was going to be doing during the assessment and constantly asked her permission to touch her or to carry out tests. He obvously had taken on board the fact that she is touch sensitive and assured her he would not do anything she was not comfortable with.

During the assessment FD had her blood pressure and heart checked. Her height and weight were recorded as was a full medical history and a discussion about her epilepsy. Some blood was taken from the artery in FD's wrist to check to see how the blood was oxygenating (I think that's right?!). The physiotherapist came and carried out a breathing test on FD's lungs to check her lung capacity.  Dr C talked us through some of the surgical procedure and attempted to explain to FD what sort of things would be happening just before her operation and as she was going into theatre. He explained how he was going to help to make her pain small instead of big and discussed with me pain relief such as an epidural or morphine drip. We discussed blood transfusions as she is expected to lose a fair amount of blood during surgery. Unfortunately FD thought this mean she was having a body transplant and we had to explain to her what a transfusion was! Dr C took us to have a look at where the theatres were and showed FD where she would be having her operation.

At the end of our assessment Dr C walked us out of the unit, got in the lift with us and walked us right to the front door of the hospital, shook our hands and bade us farewell. I was even more in love at this point! Throughout our experiences with many medical professionals we have come across some who try their best with FD but never quite get it right. Some who don't even try and some who are just so impatient and not willing to try to understand her difficulties. But our experience today with Dr C was the perfect example of how our very special children should be treated by all those who deal with them. Major surgery or medical procedures can be taunting for any child. But when you are dealing with a child with special needs that experience can be terrifying to the extreme. Their lack of understanding or sensory issues can make the experience so much worse for them. I am came away from the hospital today having a little bit more faith in the people who would be caring for my daughter.

 Of course I also came away from the hospital a total basket case. FD might have held it together today but I must admit, I did not! Once I dropped her to school I drove home crying like a baby. I stuffed my face with chocolate biscuits and tea the minute I walked through the front door! Throughout the rest of the day I vainly attempted to write reports for work. I am pleased to report at least one report got written but here are no chocolate biscuits left in the house! Today was a day when I really needed my superwoman knickers and I have never been so glad to see the Tesco man delivering my shopping! He had chocolate biscuits!