No officer I am NOT responsible for this dog!!!

Our poor pup hasn't been out for a good walk in ages because the weather has been so bad and because I am too bloody lazy tired. He's turning into a chubby furry blimp who lies on his back with his legs up in the air like a slutty pooch! So, at the weekend after noticing that the heavens were not for a change going to dump a reservoir full of water onto us, The Fashion Diva and myself decided to take the mad dog out for a walk to the local beach and country park. We'd been stuck in the house all day Saturday because FD's knees were really hurting her. But by Sunday I reckoned she could probably do with a bit of exercise to try and loosen up her joints. Because she isn't able to walk very fast at the moment I hit upon the idea of buying the dog one of those clever little extending lead things. I thought that at least the dog wouldn't get frustrated waiting for us to hurry up and he could shoot on ahead of us...........well 15 feet ahead of us as that's as far as the lead went!

So, we parked the car in the car park at the country park. The dog was so excited to be out and about in the fresh air he had a diarrhoea attack that shot out like mount Vesuvius as I stood there with my hand inside a poopy bag wondering how the hell I was going to clean that up! FD faced the other way and pretended she wasn't with us! The dog just looked slightly embarrassed by the whole sorry episode as I attempted to clear away the mess and ended up with not only a bag of crap but half a ton of grass and earth too. Seemed easier to just vandalise the grass and dig half of it up! I was a responsible dog owner you know!

Anyway, on we went. Or should I say shuffled as this was about as fast as FD could manage. Once the dog realised that he could run on ahead of us he took off faster than a whores drawers! Unfortunately for him he hadn't realised that the lead only stretched so far that he shot back like a something out of a cartoon - dog on an acme elastic band! My shoulder was almost dislocated in the whole process! He sorta lay on the ground in a total daze before attempting the same trick again while I wailed in agony at my poor sore shoulder! After about 20 attempts at trying to out-run the lead he was well and truly dizzy and had a look about him that screamed rabid dog! Other dog owners gave us a wide berth as the dog with the crazy looking eyes and slobbery mouth attempted to come over and say hello!

 Because his brain was well and truly pickled by this point he thought he would exact some revenge by getting the lead to pull the whole way out and then running at us before I had a chance to wind it back in again. The end result was me getting wrapped round a tree and getting my hair caught in a branch! I swear the dog grinned at me as I picked twigs and leaves out of my hair which now had the look of a woman who had been on the back of a motorbike without a crash helmet! To top it all off, when I was tied to the aforementioned tree, the dog cocked his leg and attempted to mark the tree as his! I got out of the way just in time! FD by this point was doing a lot of huffing and folding of arms and rolling of eyes and complaining that people were watching! I would have waved at my audience if my arm wasn't wrapped around a sodding tree trunk!

So, after the tree debacle we made our way towards the beach with the dog obviously having the memory of a goldfish and attempting to outrun the lead again and getting pinged back to us! AGAIN! He was uber excitable every time he saw another dog and jumped about desperate to play with them. All he did was tie them up too! So, there I was at one point tied to my dog, a boxer and a poodle! It was chaos! But hey! The dog was having fun! Glad one of us was! And so it continued like this the rest of the way to the beach. We managed to lasso every breed of dog you could think of and almost push a pensioner into a bin! When we got onto the beach however the pup slowed a bit and was really interested in the sea. He stood and watched as the waves came closer to his toes and almost looked contemplative as he looked out to see. FD was enjoying being out in the fresh air and had a little colour about her cheeks. And then it happened........................

As we were walking along the shoreline the pup spotted 3 children sitting in the sand digging a huge hole! He was very excited by this and took off towards the children. Of course the sodding lead would not retract to let me pull him back so he managed to reach the children in record time! Did he jump into the hole they had dug? Nope! Did he lick the children to death with puppy kisses? Nope! He ran around and around the little group, tying them up in the lead until all three off the children fell in the hole! Head first! I prayed to the gods of stressed dog owners that the hole was not filled with water. Thankfully it wasn't!  Oh my goodness! I was beetroot red with embarrassment and offered profuse apologies to their parents who were sitting watching the whole pantomime from a nearby bench. However, they just sat there laughing their heads off until the mother almost passed out! Tears were streaming down her face and the father laughed so hard he almost coughed up a lung!! I spent a good five minutes untying their children, muttered more apologies and got outta there as fast as FD's dodgy knees could take us!

And so, we managed to make it back to the car in one piece despite our pup almost squashing a Jack Russell pup by bouncing on him with excitement and  FD offering her opinion to a fellow dog walker that his Rottweiler looked very vicious and not very nice looking! The puppy and FD totally enjoyed the walk and both flaked out when we got home with the pup assuming the slutty pooch position once more. FD discussed a few 'hotty dog walkers' she had spotted and wondered if they were singl. I had spent an interesting but lovely time out with my daughter. To top it all off, OH and Afro boy had hoovered the house and OH had made dinner! Not sure I'm going to use the extending lead again. I'm not sure how many times I can get away with tying up other people's children!

Special Saturday - what inspires you?

Today's theme in Special Saturday is 'what inspires you?' What this means is what inspires you to keep going when times are tough looking after your special needs child. Well apart from the bottle of wine milk chilling in the fridge there a few things that help me to keep going.

I suppose being such an avid reader I sometimes read books that inspire me or quotes that I think 'oh yeah I get it'! I've read some great books by some inspiring people who have overcome many difficulties in their life to make a success of life and basically just get on with it. I love those sorts of people. People who find strength from somewhere despite the odds. It often makes me ashamed for feeling so sorry for myself some days. Likewise, music is often a great source of inspiration and can either have me dancing, singing or crying. Sometimes all three!!! Yes I am that person you see when you look out your window who is dancing in her car! I am the person who dances round her kitchen singing into a wooden spoon! I am that person who sometimes thinks she is a love child from the Kids from Fame! Glee has nothing on me! Unfortunately I cannot sing. Birds fall from the sky when I try and my daughter puts her hands over her ears! But I don't care. I can belt out a power ballad, albeit completely out of tune.

  

I am inspired on a daily basis by the other special needs parents I have come across through this blog and other sites I am involved with. Parents who just roll their sleeves up, take a deep breath and get on with whatever life throws at them. I admire their courage, their kindness and their unfailing sense of humour. They are a wonderful group of people who inspire me to pull my Superwoman knickers up, get off my arse and stop with the complaining! Hell life could be so much worse! They enjoy every moment that life has to offer and see the beauty in every achievement of their child, no matter how small it might appear to others.

Finally, but most importantly, I am inspired by my beautiful daughter. The Fashion Diva who is  my world. Whenever I have days that just seem like there is no end in sight. Days that really are a complete waste of makeup and have me feeling exhausted and deflated. A hug or a smile from her lifts my spirits up again and almost makes me feel guilty for having felt so low and complaining about life in general in the first place. She inspires me with her courage and her kindness. She has an absolutely hilarious sense of humour and makes me laugh so much. Yes of course there are days when its almost as though someone has flipped a switch in her brain and turned her into a demon child who can scream for hours. A child who won't eat or sleep. A child who needs every ounce of my energy  until I barely have enough for myself. A child who gets anxious over things that others would laugh at or consider silly things to get anxious about (like what colour knickers she should wear to the doctors!). But, just as quick as she is this child - this special child - she becomes my 'other child'  - someone else. She becomes the child who wants to sit beside her mummy and have a cuddle. She becomes the child who wants to talk about boys and fashion and which celebrity is the most good looking! She gives me a glimpse of the child who might have been. I love them both equally. She inspires me to find courage to tackle things I would never do and to be brave when all I want to do is bury my head in the pillow and cry. Because this is what she has to do on a daily basis.  She is amazing!

*Look out for the Special Saturday facebook page. Come and find us!

Our hospital journey continues.......slowly

As most of you are aware I have had quite a scare with FD's blood test results lately. I was so happy to be able to blog yesterday that all was OK. Totally premature of me to write that blog! FD had an appointment today with her consultant who was going to confirm that surgery was going ahead on 13th March and carry out more x-rays. Well, we had a series of x-rays. Poor FD was twisted and turned every conceivable position as for the x-rays. Not easy for a child who now has quite limited mobility, but she never complained and was so good.

 

After the x-rays we then had a consultation with the surgeon. We informed him of FD's recent blood tests an that the GP was happy with the outcome of the tests. He, on the other hand was not! He felt it warranted further investigation. So, FD's operation has been postponed until at least April / May time, providing that we have the blood query sorted by then. The surgeon phoned the GP who had upset me so much the other day and has instructed her to make an urgent referral to paediatrics for further investigations. Hopefully this appointment should come through quite quickly. The surgeon just does not think its ok to just forget that FD has an anomaly in her blood, as suggested by the GP. He is concerned that there may be some underlying health condition after all or something that may affect her bloods ability to clot.

So, in the space of 24 hours we have gone from being elated and relieved that the GP was not concerned about the blood test results, to feeling like we have been trampled all over. Its the worst thing ever. I am trying so hard to keep a smile on my face even though I actually just want to scream and shout and have a really big temper tantrum! But, I shall pull my Superwoman knickers up to my earlobes and get on with it. I have work in the morning, which of course will be an absolute joy (note sarcasm here)!

But, I have noticed that my blog has been more than a little depressing lately so I thought I would share something funny that happened at the hospital today. FD was waiting to go into the xray room for more xrays. We were sitting in the changing cubicle and I was filling out the little 'do you think you might be pregnant form' on behalf of FD. Despite all of FD's difficulties her reading ability is outstanding for a child with a severe learning disability. So, she read over my shoulder and proudly announced 'Of course I am not pregnant! I haven't done the jiggy jiggy dance with a husband'! She just rolled her eyes and announced that such a question was ridiculous! She was only 13! Awww the innocence of her. I hadn't the heart to tell her I've seen some pregnant 13 year olds! Once she'd had the xray and we made our way back to the waiting area to see the consultant we passed a young girl in a school uniform holding a baby. FD looked at me and said 'well she's obviously been jiggy jiggying!' No answer to that is there!

After our hospital appointment I decided that FD should be treated to a nice lunch in her favourite restaurant. FD was thrilled that we were served by a young, good looking waiter. She is still going through her man mad phase and makes no secret of it. I had to remind her that winking at the waiter would only make him forget what we were ordering. She spent the entirety of lunch staring at him, smiling and telling me she thought she might be in love. AGAIN! She did actually ask me if I could get his phone number but I reminded her that she was only 13! When we got home she threw herself onto the sofa, put her hand on her head and announced 'I've had SUCH a stressful and tiring day and need a power nap'! I know exactly how she feels!

The week a lot of wine was drunk!

It was a usual sort of week..........back to the doctors for more checkups and a blood test. This blood test was to check FD's folate levels as she was being tortured with recurring mouth ulcers. We had tried every treatment known to man and they just did not seem to work. Her dentist suggested that FD might have a folic acid and Vitamin B12 deficiency and we would need to have blood taken. So, that's what we did. I phoned for the results a few days later expecting to be told that yes her levels were too low and here's some supplements to alleviate the problem. What I was not expecting was to be told I needed to speak to the doctor. I felt slightly panicky but reckoned that because of all FD's health problems and her up-coming operation, the GP needed to discuss what medication she needed in the build up to her operation.

However, when I finally spoke to the doctor she was very quiet and almost contemplative over the phone. FD's folic levels were normal (which was a total shock), her iron levels were a bit low (not unexpected given her poor diet). Then the GP asked , 'have you been giving her Vitamin B12 injections'?  When I assured the GP that she had not been receiving any supplements she again went quiet before announcing that FD's vitamin B12 levels were 'abnormally high'. The GP explained that this could be a skewed lab result and more blood would need to be taken as it may therefore be a mistake in the blood test. However, as I am talking on the phone to her I am doing that awful thing that us stupid people do...........I am googling a diagnosis!!!

Google, although an extremely useful tool is not the sort of thing that you should go anywhere near if you have health concerns. Google immediately highlighted that elevated B12 in children can be an indicator of one of two things..........liver disease or leukaemia! I prompted the GP for further explanation of why the blood test could come back the way it had but she was hesitant to give an answer so simply encouraged us to come back to the surgery for a further blood test. And so we did. We spent the whole weekend worried sick. I didn't sleep much and was very weepy. A few days later I phoned up for the result to be told 'you need to make an appointment to see the doctor'. My heart started to beat in my chest so hard I actually thought I was going to pass out. 'Why'? I asked the poor receptionist whose only answer was 'I don't know and I don't understand the test results so come in and see the doctor on Wednesday'. This was Monday and naturally I couldn't wait until Wednesday to see a doctor so was advised to phone back later that morning to speak to the doctor in person. So, for the next two hours I sat and cried, gasped for breath and cried some more. I phoned my husband in a total panic. I texted my mother in law who works as a doctors receptionist, hoping she might know what the hell was going on. But she hadn't come across these sort of test results before.

The sort of panic that sets in when waiting for test results is like nothing I have ever felt before, even with all FD's difficulties I think this has been the worst one of all. I was mentally preparing myself for the worst news possible. Even if the news wasn't as bad as I was imagining, it would certainly delay her spinal surgery. Surgery we have been waiting on for 2 years now.  I had to keep reminding myself to breathe and when I did breathe I had to remind myself to slow it down and stop panting in a panic attack sort of way. Thankfully during this time FD was still in bed sleeping so didn't see me in such a state. When I spoke to the doctor she simply stated that she did not know the reason for the test to come back the way it had and stated that we should come into the surgery as planned on Wednesday as FD would need a physical examination. Now by this point I was having to be scraped off the ceiling. I told the doctor that I wanted her looked at today. I was very simply told no, the doctor did not have any time to see us today as she only had emergency appointments left. 'THIS IS AN EMERGENCY!' I wailed! 'ITS OUR EMERGENCY'!

But she would not give in. She advised us to come back to the surgery that day and have more blood tests done to check to see whether FD might have some liver problems! By this point FD was out of bed and I was having one of those arguments down the phone that you have through gritted teeth with a smile on your face so that FD did not get upset or worried. I began to demand an appointment with ANY doctor at the surgery. She held the phone away from her and I could hear her saying, 'anyone free to see a mother who is up the wall with stress'! There was a resounding no. I told her that yes I was bloody well up the wall with stress and it was stress that she was now creating so get me an appointment NOW!!! She was standing firm that for her this was not an emergency! The call ended by me throwing the phone across the room! Ooops.

So, poor OH got a panicked phone call from me crying about the doctor refusing to see us. Now, theres one thing about my husband that you should know. He never takes NO for an answer where other professionals are concerned. He promptly got on the phone to the surgery and I don't know what he said or what piece of legislation he shoved down their throats but we had an appointment an hour later! It was not with the gobby doctor I'd argued with but another doctor we hated! But any doctor at this point was better than no doctor. He attempted vainly to examine FD, looking for an enlarged liver and spleen that would indicate liver problems. Have you ever tried to touch the tummy of a child who is touch sensitive? No? Neither had he. He almost ended up getting FD's knee into the back of his head! I can't fault him though on his approach as he was a lot more sensitive to her needs than he had been a few months back. But FD kept wriggling and jumping off the table and at one point was crying. I was having to hold her hands to stop her from punching him. At the end of the examination he was confident he could not feel anything untoward but it was difficult to be sure as FD kept tensing up. We would have to wait for the test results to come back the following morning. Those tests would be looking at liver function and whether any 'other' blood disorders (I knew he meant leukaemia) were being flagged up.

And so, began another slow and upsetting sleepless night. Both OH and myself were awake most of the night with worry. We'd tried to have an early night but both of us were awake by 1am! It was the most awful, heartbreaking and frightening feeling in the world as in my head I tried not to think of worse case scenarios but naturally did. When the surgery opened at 9am I was straight on the phone and was told the doctor would need to speak to me at 11.30! Arghhhhhhhhhh more waiting!!!

So for the next 2 and a half hours I cleaned and cleaned and cleaned! My skirting boards are sparkling. When I eventually got speaking to the doctor we were told the happy news that FD's liver function tests came back normal. Then he said, 'you know I was worried about Leukaemia yesterday but didn't say because I didn't want to worry you'. TOO SODDING LATE!!!! Why does the medical profession think that the word parent equates to stupid? Thankfully Leukaemia was being ruled out because FD's white blood cell count was normal. I sat on the floor with relief. My legs just seemed to lose all their strength. FD will need her blood checked every few months until things stabilise. The doctors still have no idea why her body is producing excess amounts of Vitamin B12 but they don't think it will do her any harm. Of course her surgeon will have to have a look at all the blood test results and make up his mind regarding her surgery and if this will impact on things but we will just have to wait and see.

 This is a week I never ever want to have to live through again. I have never been so scared in my whole life. I have always had a fear that FD would not make it to adulthood and this is something I have never been able to shake since the day she was born. She seems almost too fragile. Having this scare honestly made me think that this was it! Her time had come. It seems stupid now seeing it written down but in my head the fear was all consuming.  Throughout it all FD was a superstar despite having 3 lots of blood tests done and a physical examination. I on the other hand was a mess! This was a week my Superwoman knickers were feeling a little tight! Thankfully I had fantastic support from my husband, his family and my lovely online family on Twitter and Facebook. Thanks guys. xxxx

Blood tests, old blokes and parking your truck!

In our never ending round of hospital / GP appointments, I had to take FD to the GP again to have a second blood test done due to elevated Vitamin B12 levels. Anyway, whilst waiting to be seen in the treatment room we spotted a young child who also attended FD's school and who was autistic. He was only about 8 years old and was happily chatting to himself at the top of his voice and making comments about everyone who came into the room. He was not rude, but just making observations. His comments to us where 'What is SHE doing here? Obviously he was seeing my daughter in a completely different context than what he was used to and he was surprised to see her in the GP waiting room. He was very loud but that was OK. He wouldn't be the first child to be loud in a doctors waiting room and I'm sure not the last!

Whilst most other patients in the waiting room very quickly realised that this was a very special child, there were others who did not. In particular, an elderly gentlemen. This man's heart was obviously in the right place and he attempted to engage the child in conversation about the toy truck he was playing with. Whilst initially the child was happy to be chatting to this stranger, it soon became apparent that the child was having trouble with understanding some of the content of the conversation. The elderly gentleman kept asking questions about the young boys toy truck that were complex and confusing for him. The child's mother was very clearly starting to become uneasy and tried to explain the the man that her son did not understand what he was talking about. However, the man did not appear to take on board what was being explained to him and continued to attempt to show the boy how to reverse his truck and ask him yet more questions. As a result, the child started to become more agitated and more noisy because he could not process the complex parking instructions the elderly gentlemen was trying to give him. Apparently there are many ways to park a toy 8 wheeler truck! Who knew!

Whilst the child obviously knew FD from school, I did not know his mother nor she me. When, in the end, she was forced to remove the child away from the elderly gentleman and sit him elsewhere in the waiting room, she sat down beside me and looked exhausted and stressed. Other people in the waiting room were now staring at her and her child. She was so uncomfortable that every time her child spoke or made any sort of noise that was outside of what was considered 'normal', she tried to quieten him. I leaned over to her and whispered 'we don't do waiting so well either, but I believe our children attend the same school'. She seemed to relax a little and think she was glad of a friendly, non-judgemental person.

Quite often whilst out and about with our special needs children members of the general public do not realise that your very special child requires a little bit of extra care and understanding. Particularly when the disability is not quite so obvious. Sometimes people will approach FD and attempt to engage her in conversation before realising that she is not getting a full grasp on what they are talking about. I love those that once they do realise that FD has difficulties, don't give up but continue to chat to her but in a different way. They change their tone and sometimes change the content of what they are saying. I love that they try even if sometimes they aren't always successful. What I do not like is those that despite being told that a child does not understand them, persist with the same thread of conversation that is so painfully obviously not working.

However, I can't condemn the elderly gentleman in the waiting room at the doctor's. I do believe that his intentions were good and he genuinely did not understand the implications of his pushing and pushing this child to converse with him or giving him complex instructions.  He was extremely old and perhaps its a generational thing. I suppose in his younger days, autism or learning disability wasn't really something that was highlighted, recognised or talked about. Maybe education about such conditions needs to be pushed to an older audience as everyone's life is touched by special needs in some shape or form, either directly or indirectly. That's when we really need to pull our Superwoman knickers up to our belly buttons, take a deep breath and push forward, despite the odd looks or disapproving sighs from others.

I''ll have a P please Bob!

As I have previously blogged about, FD has moved to a school for pupils with a Severe Learning Disability. And, I have also previously blogged about how wonderful this school is. Well, the events of the weekend have definitely made my mind up that not only was the move to this school the best thing for FD but in a totally selfish way it was the best thing for OH and myself! The school has a parent/staff association that puts together a number of fund raising events to help the school buy the latest gadgets such as ipads and touch screen monitors for the pupils to use. The commitment from the parents and staff members to ensure that these events run smoothly is fantastic. The equipment that the school is able to purchase has been amazing and the pupils have definitely benefited.

At the weekend the parent / staff association had organised a pub quiz. When I heard about it I will admit to groaning a bit about having to go out on a Friday night after work when all I wanted to do was have my Doritos and Dip night with Afro Boy! When you have had the working week I have Friday nights come as a huge blessing and I drive home from work singing 'its the weekend oh yeah'! I also do a little dance when sat at the traffic lights and wave my arms about. I do get some strange looks from other motorists but I don't care! Anyway, this week at work had been the stuff nightmares are made of so you can understand why  was reluctant to drag my ass out of the house again on a cold, wet and windy Friday night. And, I suppose I was particularly anxious because this was our first event with other parents other than school meetings or events organised for the kids.

The thing that people with 'normal' kids underestimate is how lonely having a special needs child can be. There is no opportunity to stand at the school gates and chat. There are no sleepovers and socialising as there would be in a mainstream school. Our children are collected by the school bus and returned on the school bus. Most special needs parents live in isolation and have a better relationship with their child's medical professionals than they do with other parents. To actually be able to have the opportunity to meet up with other parents for a bit of support and to just have a good time and forget that our lives are not the 'norm'. But I had expected to be honest that if I went to this pub quiz it would be all doom and gloom and woe is me with parents who would sit all night and talk about all the difficulties they had in their lives. Would they be a group of people who couldn't see the positives? I had actually left a support group I belonged to a few years ago because it just depressed me! For the first time in my life I am pleased to be wrong!

We spent the night with a group of totally mad people who laughed and danced all night and got a little drunk! (OK, I got a lot drunk and will be hanging my head in shame at the next school meeting). Teachers, classroom assistants and parents danced together and basically had a great old time. We socialised like old friends and there was not a gloom and doom story all night! We were made to feel like we'd always belonged and everyone was so friendly. It was refreshing. At the end of the night we got hugs and kisses from some of the parents and staff and we left knowing that we had made the right decision in sending FD to this school. Of course everyone at the pub quiz was totally bonkers which meant we got along fine. I'd much rather send my daughter to a school full of mad people who knew how to laugh and love and treat everyone with equal amounts of respect and love than a school were there was a definitive separation between parents and staff. As the schools facebook page (yes that's right they have a facebook page) says 'The biggest Family in......(insert town name here)! Never a truer word.

I'll just keep dancing!

My daughter recently came home from a youth club which is run by Mencap, to announce that she was in love! Normally when she is interested in someone of the opposite sex she normally just goes 'phwoarrrrrrr' when they walk past her or winks at them. She did tell some poor guy recently that he had nice legs. He was coming out of the gym at the time and almost sprinted over the bonnet of his car Starsky and Hutch style to get into it when my daughter complimented his legs. He was very embarrassed and sped away as my daughter gave him a little wave! I'd only left the house that day to buy dog food!

So, you can imagine my surprise when FD announces that she is actually in love rather than just fancying some guy. Teenage girls being man mad are bad enough (as I've blogged about HERE ) but teenage girls in love I think is somewhat more terrifying. FD can't actually decide between who she is in love with - the short dark haired one or the tall ginger one who pats her on the head a lot. Anyway, at youth club there is a disco. At the disco the small dark haired one asked her to dance. Now FD does not do dancing. Well not in public anyway. But apparently she accepted his offer of a dance and the two of them tripped the light fantastic! At this point, Ginger boy who had not been interested in her previously also asked her to dance and announced to the other boy that he should just remain her friend and not to bother asking her for another dance! This is what I love about the world of learning disability - its all very black and white. These kids and young people are so open and often brutally honest that I wonder what sort of place the world would be if we were all like that!

So, at bedtime my daughter was very excited and wanted us to sit up and have a girlie chat. Oh hell I thought. I just want to go and lie on the sofa and drink the lovely cold glass of wine that was waiting for me! But noooooooooooo FD wanted to talk about loveeeeeeeeeeeeeeeeeeee! 'Can I ask them both to be my boyfirend'? 'That wouldn't be good to have 2 boyfriends' I replied, although secretly thought about the advantages!  'Can I ask the ginger one because he is really good at remembering people's birthdays?' I shook my head to this stating that he was 16 and she was 13 and perhaps she should wait a few years. She rolled her eyes and stated that she supposed she could go out with the other one because his dad had a nice car and could give her lifts everywhere if I was working late. She had it all worked out! She was so excited about the prospect of being in love with these two boys and having the option of two dance partners! Her words to me as I kissed her good night ........'oh OK I'll keep my options open and just wait until I'm 30 and marry one of them then. But until then I'll just keep dancing mum!'. Wise words! Because this mummy isn't ready to deal with her baby growing up!

Sausage rolls in my knickers!

Having a child with autism brings many challenges. One of these challenges is the daily battle to get FD to eat. Eating difficulties amongst autistic children are not uncommon. I used to work with an autistic man who would only eat white food. So therefore his diet consisted mainly of potatoes, milk, bread, cauliflower and porridge! Its also not unusual for those on the autistic spectrum to have an extremely limited diet whereby they only eat one or two foods. A friends child only eats chicken nuggets and chips. That's it!

When FD was younger we didn't have any problems with her eating. If it was on her plate then she ate it! Sometimes she even ate things she shouldn't. We used to have a Yorkshire terrier who lived in fear that she was never going to get to her dinner as FD often could be found chomping her way through the dogs food. Disgusting I know! Made for some interesting nappies too! However, over the last few years FD has become more select about what she eats. These problems seem to have started at around the same time she was diagnosed with epilepsy - approximately 5 years ago. The medication that she was prescribed not only made her hair fall out but it seemed to affect her appetite. She just never felt hungry. She started hiding food if she was left alone at the table and we would often find sandwiches hidden in the bin or sausage rolls hidden in her knicker drawer!

 A change in medication seemed to alleviate the symptoms but a worrying new precedent had been set. FD now had a strained relationship with food. If she had been a neurotypical child I would have been concerned that she had an eating disorder and had body image problems. But, as she was a child with a learning disability and autism I felt it was connected to that. Was it learnt behaviour. Had she now just got into the way of not eating. I don't know and suppose I'll never know. But it has given us many problems over the last few years. FD has not put on any weight in 2 years and for a teenage girl who has hit puberty, this is not good. She is 5ft 5 inches and is very thin looking. I can wrap both hands around her waist. Because she is due to have major spinal surgery she needs to build up some muscle and generally improve her overall health to help her through the operation.

One of the difficulties FD has with food is that she has suddenly gone from loving particular foods to absolutely hating them with a passion. Take burgers for instance. She used to adore them smothered in ketchup. Now she almost gags eating them or just point blank refuses them. Is it the texture of the meat? Perhaps. FD hates to eat in the mornings. However, because she takes her medication in the mornings she has to have something in her tummy. So, we have gone from huge bowls of cereal to no cereal at all - apart from this weekend of course when she has suddenly decided that she likes Shredded Wheat! This is a good move from cereal bars or just a glass of milk for breakfast. Whilst its great that FD has found something new that she likes we know that a pattern will soon develop. She will eat her new found favourite food so much that within a few weeks of liking it she will soon hate it and we will be forced to find something new for her to try. At this point I will throw myself onto the floor and sob! (No I won't really! ........well maybe a bit...........oh OK sod it......I'll just open a bottle of wine).

One of the other difficulties that FD has is choices. Presented with too many food choices she will go into meltdown and feel under pressure. How does she deal with this? She stops eating! I initially thought I was being a great mum giving FD lots of choices of lovely foods but unfortunately it had the opposite effect and just distressed her. I have found that preparing menus for the week helps her see in advance what she will be eating. Its become a case of taking away her choices and simply telling her what she will be eating. This isn't always successful either and she can sometimes dig her heels in. Quite often she has her own alternative at meal times. I think the stupidest piece of advice I ever received about her eating habits came from my mother (which is not unusual). She felt that because FD enjoys takeaway food on a Saturday night that perhaps I should just give her takeaway all the time! Apart from the obvious expense, there is absolutely no nutritional value in doing this. I would be filling my daughter with so many additives and horrible fats that she would end up with a whole host of new illnesses and her behaviour would also be affected. Takeaway is OK for a weekend treat but not for every meal! I did subtly point this out to my mother.  Yes hard to believe but I can be subtle!

 

FD's paediatrician prescribed her a milk shake drink that could be used to replace one meal a day, preferably breakfast. It was fortified with a host of vitamins etc and came strawberry flavoured. FD hated it! I tried buying ordinary milkshake drinks, emptying them out and filling the container with the supplement. FD knew it wasn't proper milkshake! I even tried adding ice cream to it but nope that sneaky child of mine could tell! She used to do this when I tried to go down the Gluten free route. I swapped some foods for Gluten free alternatives and put them in the usual food wrapping etc. But she knew! If presented with a plate of chocolate biscuits she could tell the difference between the Gluten free ones and the ordinary ones!

So, where do we go from here? Well, we have managed to secure an appointment with a dietitian who runs a clinic from FD's school and we go to see her in a couple of weeks. We had avoided dietitians up to this point because the more of an issue we made about her eating, the more problems it created and upset FD which resulted in less eating. A totally vicious circle. However, I am confident that because the clinic is in her school and many of her school friends attend it, she won't feel that it is such an issue or that she is very different from other people at her school. We are fortunate (or unfortunate, however you want to look at it), that FD was re-assessed as having a severe learning disability over the Summer. The move from moderate to severe appears to have opened up some new doors for her and us in terms of accessing some services and making people sit up and take notice. Of course we have also been instrumental in getting some of these things for FD after re-evaluating the direction that FD's life was going and how her needs seem to have quite dramatically changed over the last year. We realised that we couldn't do it all and needed help. We'd been stuck in a rut for a long time.

So, hopefully we will get some help for FD and try to resolve or manage her eating requirements a little bit better as I am sure there are things that we could improve on as I'm pretty sure we are probably doing something wrong. I don't mind admitting that some days there are holes in my Superwoman knickers and that my superpowers do leak out and that's when mistakes are made or I don't manage the situation quite so well. Oh actually that sounded like an advert for superhero incontinence pads! Ewwww!  Errr excuse me.!!!!This superwoman did her pelvic floor exercises!

That sinking feeling!

At the weekend OH and I had the wonderful opportunity of having a whole night away to ourselves in a luxury hotel! It was bliss!!! No children! No worries! Well OK, yes I worried a bit about FD. I knew she was in good hands staying with my lovely mother in law but mummy brain always kicks in and I spent a lot of time thinking about her. Anyway, despite being a daft old bat I managed to have a fantastic time. We had a lazy lunch, followed by a massage in the health spa. We had a nap in the afternoon and a gorgeous dinner in the evening. At 10pm we sneaked a bottle of wine, 2 tubes of pringles and a bar of chocolate up to our room and had a great old time! Yes my life is truly rock and roll! At one point OH wanted to run down the corridor of the hotel and knock other people's doors and run away! Hard to believe the man is 43! We didn't do that by the way! We had other stuff to do.......errr...... Anyway............moving on........

The next day was spent with my step children as it was my step son's birthday. That was lovely, even if it did mean spending the day also with the first Mrs Jontybabe. But hey ho. This is what you do for love eh? I was very well behaved, smiled sweetly throughout the day and only swore when no-one could hear me! My lovely step son had a great birthday and was thrilled to have us fly over to see him! So, it was well worth it.

So, the week was started with me feeling happy and relaxed and totally rejuvenated and loved up again! I didn't even care that I had a difficult meeting planned for Monday. Nothing was going to upset me! Until I got a phone call that gave me that sinking feeling. It was a call from FD's teacher telling me that she was very concerned about her. Apparently FD was lying with her head on her desk and was shaking quite badly. The teacher felt that she was having a seizure and could I come to the school as quickly as possible. (FD suffers from epilepsy) So, I drove like a bat out of hell to the school. I am pretty sure I went through every red light and broke every speed limit! When I arrived at the school, probably doing a handbrake turn in the car park and bringing the car to a screeching halt, I got the shock of my life. Poor FD was completely out of it. She was on her feet OK but was extremely dazed with eyes like saucers. She was shaking a little and was having difficulty walking. Her seizures normally are quite subtle, with a little wobble and a bit of unsteadiness. Sometimes she throws up. But, more than often they happen during the night or she usually has a succession of absences. Compared to pre-diagnosis she is much improved thanks to medication and we manage her epilepsy quite well at home.

So, the teacher helped me put FD in the car and I drove her home. On the way home she didn't speak except to ask me who I was and how she got into the car. I was by this point trying very hard not to cry. When I got her home she was still very unsteady on her feet but managed to make it onto the sofa. After a while she soon came round completely and within half an hour was absolutely fine, asking for fish fingers! Just like that! After all that drama she wanted fish fingers!!! I wanted wine! Sod the fish fingers! So, I had gone from uber relaxed to a raging alcoholic with a nervous twitch in 2 seconds flat! Thank you my lovely daughter! She couldn't understand what all the fuss was about! Of course in the midst of this I suddenly remembered that I was supposed to be in work at a meeting to decide a child's future! Oh hell. Luckily my son was at home and offered to look after his sister for an hour so I could attend this meeting.

 So, I did my Jenson Button impersonation once more and sped up the road like a woman shot out of a cannon and ran into the meeting with paperwork flying everywhere, panda eyes because I had had a little weep in the car and my hair looking like I'd been on the back of a motorbike without a crash helmet! Surely there was an easier way to make a living!  There I was now having to be a bad mummy and leave my sick child because someone else in the world could not be a good mummy to their child and I was having to fight for the child they had given up on! I had my social worker hat on and heaven help the person who was going to argue with me!  I don't usually give a stuff about work when my family must come first but I knew my daughter was safe and happy and this child was not. Throughout the meeting my son was sending me texts every 15 minutes to assure me that FD was absolutely fine. I was almost daring someone to ask me to put my phone away because I was in the sort of mood to throw a chair. The meeting went well however and I did my job brilliantly (even though I say so myself). I raced back home again and swear I went round a corner on two wheels! I was like a stunt driver on LSD. I think I might need another weekend away to recover from this experience. Never mind superwoman knickers. I had my superwoman vest on too!