Selfish feeling.

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I am feeling rather put upon and fed up at the moment. I then feel so guilty that I should feel this way.

This all came about with my Mums problems. As I have spoken about before, she has been through a bad time recently – http://jas2jar.wordpress.com/2014/10/15/hospital-at-last/ This has taken its toll on the whole family, as we have almost had to cancel our holiday, as the hospital were adamant she should go home, and I was determined she was not! I won, and we got away.

The bottom line is that after much deliberation, the surgeon has decided he is not prepared to operate as her chances of surviving the op to realign her hip are far too low at 1 in 3. He is not prepared to take the risk, and I can understand why, but she is entitled to a quality of life. They have given her some very strong pain killers, which don’t seem to be quite hitting the mark with her pain, but make her quite dopey for about an hour after each dose. They want her to give it a go to see if they kick in before reviewing them, but I am not too sure, and neither is she that they are the right drugs. They have also given her some intense physio sessions to try to teach her how to walk with a dodgy hip! I am still waiting for them to get in touch about continuing her treatment, as giving her a huge pamphlet of exercises isn’t really enough to help her gain movement and confidence.    I will give it another day before making phone calls.

Since getting her home on Saturday, I have realised how poorly she actually is. Getting her up the stairs to her bedroom is a major mission every night. She can’t actually lift her leg high enough to make the step, and so I am having to lift her foot for her to help. It is just as bad coming down, and in fact more dangerous, as I am spotting her from in front, so if she fell, she would probably take us both out!

I am feeling totally selfish about whats going on in my head about all that is going on in our household. When you become a parent, you lose some of your personal identity as you grow the new caring persona, and as a parent of additional needs children, you are happy to forget about some of yourself as you fight for the rights of your children to get on in life, but when you become the sole carer for your parent, it feels wrong. Nobody has asked me if I am prepared to give up the little spare time I have to run around after someone who can’t do anything for herself. It is just expected that I will do it, and being my Mum, of course I will, but I feel I want to cry a lot at the moment as I see the next ten years of my life continuing the way the past few days have. It is a horrible prospect, but the guilt I feel for feeling this way is so much worse. It is something I have no choice in, and that I think is what scares me. I really don’t want to end up resenting my Mum, but fear if I have to put too much cream on her bum I just might.

I am waiting for occupational therapy to come and look at the house and see what we need to do to make life easier for her, but it the mean time, she can just about shuffle to the loo and back. I am also researching any help I can get as I have been offered no guidance as to what I should be doing to help her.

The attitudes of send her home to cope as she is mentally commandant, is understandable but no thought has been given to the impact of her mental health as she gets frustrated by her lack of movement. To be told she will eventually be in a wheel chair doesn’t really help her believe she needs to try either.   Also no thought has been given to 2 ASD boys who have to at times play second fiddle to their Grandmother.

I am presently concerned and confused by the path we are on. I know as we develop ways of doing things life will get easier, but right now, things are so gloomy I just want to cry some more.

Haven does it again.

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With all the hassle going on in my life the last few weeks, I was really ready for the break. Luckily my Mum wasn’t sent home from hospital and so I was able to get away with the family – it had been touch and go up until the last day as to if they would release her, but I will talk about that another time.

It has become a family tradition to go away for M’s birthday. He doesn’t have many friends so a party hasn’t been a possibility for many years, so instead, we have made it a special day on holiday for him. As with many things within our ASD family, you do something once, and its scary, do something twice and it is the norm, therefore, this is the third time we have spent the October break with Haven, at Haggerston Castle – http://www.haven.com/parks/northumberland/haggerston-castle/, we have also been there for the past few Easters too! It is a lovely park, with 2 great swimming pools, a lake, and a lovely entertainment centre, including restaurant, take-aways, show bar, and or course the amusement arcade. I think because we have been here so often, it is a place the boys feel confident, as they know where things are and on the whole what time the main events are happening.

A very important part of any trip, is where you stop for breakfast on the way.     For my boys, there is only one place.    IKEA.    I am sure they believe it is a restaurant that sells furniture on the side, rather than the other way around!

We arrived across the border and checked in, and found we were in a caravan, only just on the park, it was so far away. It meant we had to drive back and forth to the main complex, but the luxury that there was made it worth while. It was a real home away from home – we learned a long time back that it was worth up grading to get heating and space.

The first point of call for the boys was then to the arcade. I am sure many people would be horrified at the money the boys waste in there, but it is art of their holiday, to win tickets to exchange at the end of the week for prizes – they won enough over the week, to get themselves some great speakers which have dancing lights in them, as well as bubble swords, stickers and sweeties. Unfortunately, being so close to the end of the season, the place was looking a little bit tatty, and the carpet is in desperate need of repair. I managed to catch my toe in a missing cover on a sunken socket, and went flying. Luckily I didn’t hit any of the machines as I went down, but managed to bruise my knee and wrist – both are a fabulous purple colour, and I got some very strange looks in the swimmuing pool! I complained, and suggested the area had the very minimum of a wet floor sign over it, and I am pleased to say that they did do that immediately, and it was there for the rest of the week. I was offered a first aider, which I didn’t need, but there was no accident form filled in, which I believe there should have been!

We then headed to the pool. Swimming is always a major part of our trips away for the boys. It is something neither are over keen on doing when at home, but an essential part of any holidasy. D has been a confident swimmer for some time, but M has never wanted to do it, instead he would rather just splash about. However, he just took off, and said he could swim. He was brilliant and the more he did, the more he wanted to do. To see him inflate when we told him how proud we were of him was lovely, he glowed with pride and kept telling us what a good swimmer he is. There is also a slide in the pool where the kids happily line up to make a splash, seeing who can make more people wet seems to be the game they all play!

I then booked the activities for the week. There is a ranger at the site who the boys adored at our last visit, and so they wanted to do all of his classes – the boys love their computers and video games, but being outdoors and getting mucky is a thrill to them. There were 3 classes for the Tuesday and 2 for the Thursday, so it broke the week up nicely. then, there was a call on Tuesday morning to say there weren’t enough kids booked on the morning one so could they push them back to the Thursday, I of course said ok. D went into total meltdown at being told this, but M was quite understanding. We therefore spent the morning in the pool instead. The afternoon, we went for the first of the sessions, only to be told that it couldn’t take place because of the high winds. Both boys were gutted, but were calmed by being taken to the bar where there was wi-fi so they could play some minecraft. I had to fight for a refund for the sessions, as they wanted to move them to other ones, but they were already booked on the rest of them for the week.

The evening shows are loud.   The boys enjoy the early character ones, but don’t want to stay for the games later on.      We did however manage second place in the family quiz, only loosing out because we couldn’t name all of the members of One Direction – so no real shame there.

 

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On the Wednesday we took a trip into Berwick-upon-Tweed. It’s not the biggest of towns, but it has some lovely independent shops, and we bought the boys new winter gloves and hats, as well pies from an amazing butcher! We then went into a great little tucked away restaurant called The Sinners, for brunch. We had full fry ups, which were very naughty but better than nice!    It only seated about a dozen people, but was so worth finding.

Thursday was M’s birthday. 9 years old already. Seems hard to believe. We had taken just a few presents for him to have something to unwrap – he had a second birthday when we got home. He was made up with what he had, and thanked us many times for his gifts, even coming up and giving us all a kiss to say thank you later in the day – personal contact is not something M does very easily so it meant an awful lot. He spent a lot of his day with Ranger Steve, and had a real blast, other than when everyone sang happy birthday to him, which he totally hated. The low point of the day came when during a scavenger hunt, he fell into a pond. He ran off to be alone – his usual way of dealing with pain and upset, but Hubby followed him and took him back for a hot shower. The next session was camp fire cooking where they got to melt marshmallow and eat them with various food – chocolate digestives, hobnobs, flapjacks, brownies, and of course by themselves.   Being M’s birthday, he was allowed to go up more often than anyone else, which he loved!   The most fun came when they took part in a battle – the session postponed from Tuesday.    After some talk about how to stay out of sight in the woods, they donned camouflage overalls, and crawled in the mud and fought with water pistols.

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His day ended with his choice for tea, and he went for Papa Johns pizza, which they deliver to your caravan. It was delicious! I think my wee man had a lovely day.

Friday morning we headed back up the road, via The Robins Nest Pub on the outskirts of Edinburgh. A while back I won vouchers for a Sizzling Pubs – http://www.sizzlingpubs.co.uk/ and so we decided to use them for our en route stop. The food was wonderful – far too much off it, but it was freshly cooked and very reasonably priced. We were so full after our main course, even the boys decided they didn’t want pudding – they had been eyeing up the ice cream sundaes from the first look at the menu! I must say it wasn’t a chain I was familiar with, but would highly recommend them now I’ve tried them!

We then got home, and unpacked the car. The worst part of a holiday then began, as I stared at the mountain of washing that needed to be done! Sometimes I really feel sorry for my washing machine, but I am glad I have a large drum one!    My main problem is getting it all dry now the weather has turned wetter.

The boys had a great time, and I got the break I really needed as I was at frazzle point. They are already talking about what they want to do next year. I think Haven will be getting repeat custom from us for many years to come!

Hospital at last!

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This week has kind of been a blur and a mixture of emotions. However, finally, my Mum has been hospitalised!

Monday started with me in fighting mode, as we entered week four of her inability to move. I phoned the surgery, and explained it was a week since the doctor had said it was urgent she had x-rays, but we had heard nothing and we needed to know what was happening. The person I spoke to was very helpful, and said she would make a call to find out what stage it was at, and let me know. She was as good as her word, and called me back to say the request had been received and we would hear in due course, because it was marked as urgent, but the person who could give an exact time and date was not there until the Tuesday, when she would call again to get answers. At this stage I just lost it, and the tears came. I was tired, and mentally exhausted, and just cried. I demanded a doctor come out to see Old Person, as I didn’t know what else to do with an 88-year-old that couldn’t get out of bed. I was told the doctor would call me back. She did. Firstly she spoke to Old Person who explained the pain wasn’t getting any better, and her leg was till not weight baring. She then asked to speak to me, and I went through the whole thing, and to be honest, I was quite snotty with her, and a couple of times she told me in her best condescending voice that she was trying to help. She agreed to come out and examine her again. When she arrived, she spent about 15 minutes examining Old Person, before talking to me, and explaining, she would phone the orthopaedic consultant at A & E to discuss the best way forward, and she would then call to let me know what was happening. Of course she didn’t call back that evening, but we felt we had taken a small step forward.

Tuesday arrives, and Old Person seemed down. I think she is totally fed up with people doing nothing but lip service. The doctor then calls, and says they have decided to get her x-rays that day, so they can make a decision about what to do. Then the laugh comes when she says for me to take her to the hospital! I of course refused, again explaining there was no way she could manage the stairs, so the doctor begrudgingly agreed to arrange an ambulance to collect her, but it could arrive at anytime. The positive was that because the GP had arranged for her to go to A & E , she wouldn’t have to sit and wait, but would be seen with priority. I therefore got her dressed and we waited. She had two handsome young men arrive to get her out of the house, strapping her to a chair to carry her down the stairs. Both boys were very clingy as they put her into the back of the ambulance. D even tried to stow away with her! She was then off. I didn’t go with her, partly because of the boys, but also to do with her being able to explain what was happening in her words.

About 2 hours later I got a text from her to say she was still waiting, and had seen nobody. The next one came another hour later to say she had been told there was no transport home, and she would have to make her own way – yet she had not seen a doctor at this stage! Eventually she said she was at x-ray, but having to wait for the pictures to be reviewed before they would make any decisions. Then the news we had been hoping for, she was being admitted. The x-ray had shown that her hip was dislocated – she had seen three different GP’s at the house, as well as nurses every day, making her move to dress her wound, and a physio, and yet nobody had noticed that her hip was dislocated, and I am sure they weren’t overly sympathetic a lot of the time to the pain she was telling them she was in. It is believed that the way they manipulate the patient during the operation to drain an abcess at the base of the spine, is known for causing problems, and with her already damaged hip, it had been put out.

I had a call from the ward to tell me where she was, so I could take her in some bits she may need.

I went in that evening, by myself, and she was by herself in a side room, looking thoroughly fed up. She had been left on the trolley, in a store area of the ward until a bed became available – its unbelievable! She was however now comfy, but had been given nothing to eat or drink since she had arrived at the hospital about 11am – it was gone 6.30pm! I asked if she was fasting, and was told she wasn’t, so I asked if they could get her some water, which she finally got just as I was leaving a couple of hours later!

She said they had admitted her, until they could work out what to do with her. They had however told her, that because of her age, they weren’t too happy to operate! Her orthopaedic consultant has had her jumping through hoops doing tests recently to check she was fit to have the original realignment, so to suddenly be told she was too old, had really upset her. They had asked her consultant to come to see her, but he is based at the other hospital, so it is a case of when he can make it over. I am horrified anyone could say this to somebody. It smacks of cruelty, to say to an older person that because of their age they don’t deserve a quality of life. Is she meant to just sit and vegetate until she dies? I just hope her consultant is more understanding to her situation! I tried to talk positively to her, but it was quite hard to find much to be upbeat about.

Today, she sent me a text this morning, to say she was given nothing to eat yesterday, but her corn flakes this morning tasted wonderful!!!! She had slept well, although they had woken her about 11pm to offer her sleeping tablets! They have confined her to her bed, which means toileting is happening via bed pans, and she has managed to flood the bed twice already! Hopefully if they keep her immobile for much longer, they will fit her with a catheter. She sounded happier in the morning light, but had not yet seen her consultant. One gaggle of doctors had been in to see her, and their attitude was to ask why she hadn’t got a stair lift she could use – she pointed out she didn’t have to money for that, and having one wouldn’t actually mend her hip! She seemed to have her fight back.

I went in with the boys after lunch, and she looked much more rested. It must help her mental health to know she is in an environment that can manage your pain relief. She was still waiting to be seen by a doctor, let alone her consultant, but kept being told someone will see her at some point today. She was talking positively about not letting him just fob her off with doing nothing because of her age, and that he has already explained to her about the risks involved in an op – hence all the tests she has been having recently, and her attitude has been that if 1 in 10 die on the table at her age, then it means 9 out of ten live a much better life afterwards! I don’t think she is being unreasonable to demand a quality of life, that doesn’t involve sitting in bed for the next 10 years. I just hope she stays strong when he actually talks to her, and that he has a plan to get her out of pain, and mobile again.

On a purely selfish note, having her in hospital, means that we should get away on holiday next week – the boys need it, and D had many tears about going without me, and me missing M’s birthday if I stayed home. I just don’t think it is right if they try to send her home before getting her sorted, because as it is, out house just isn’t suitable for someone who can barely walk – we have a deep step at the front door that she has problems with ordinarily, her bedroom is upstairs, and our downstairs living is open plan, so there is no way we can make a bedroom for her, and these are just the things I can think of without really thinking too hard!

Time will tell how we move forward from where we are now. Today though, she is in a place where she can be cared for and looked after in a way that I just can not do.   I am just hoping now I know she is safe, I can get a better night sleep!

I was feeling sorry for myself.

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Today, I was feeling run down, and therefore sorry for myself. I do wonder if stopping my iron pills has been part of my reason for feeling so tired, but never sleepy, at the moment, but the doctor wants me off them for three months before doing more blood tests – I just have to keep going for that long!

I then stopped and thought about how lucky I actually am, after a chance conversation with a Mum going through hell and back trying to get answers about her childs behaviour, and fighting to get taken seriously that there maybe something that needs help. I wish them a lot of luck with this as it is a heartbreaking process that never has a positive outcome. You either have a piece of paper that says your child has to learn to live with being different, or you return to stage one of tearing your hair out as you don’t know what to do to help your child cope with the environments we put them into. All that can be done is to love and support any child.

So this is why I feel I am so lucky. M had shown signs of doing things a little differently from as young as a baby. He flapped. As we had never seen another child doing this we had no benchmark to decide if it was just something some kids do or if it meant there was something wrong. We have video of him sat in his high chair on his first birthday flapping away. Eventually we realised it wasnt “normal” behaviour and went to our GP who upon hearing our description of his behaviour referred M immediately to the hospital. This lead us on a horrific 18 month journey of testing and assessment which ultimately led to his diagnosis as High Function Autism. I cried for ages after we were given the news. It didn’t change who he was to us, he was still the little boy we loved beyond anything, but now he had to face the world with a label on him. I have always hated the idea of putting labels on people, but especially children. Then, the reality sunk in that the reason we had pushed for answers to his behaviour was to help him. This label we had put on him, wasn’t in flashing neon, so it wasnt the first thing people see when they meet him. It did however mean it opened doors of help for him. It meant the school were able to understand when he couldn’t cope with sitting in the middle of the class, or that the playground can overwhelm him. It meant we were able to adapt our behaviour to allow for things he found stressful. All in all, for M being labeled as ASD has helped him cope, because it helps people understand why he is different. It may not mean that he always gets the help and support he needs, but it does mean the root of his behaviour can usually be identified.

In a way I feel we let D down. It is two years ago today that we had the first appointment with the psychologist about him. That time was just us filling her in on his behaviour. He was showing signs of being “different” early on, but we were so wrapped up in getting M diagnosed that he kind of got left behind. We felt a lot of his behaviour was attention seeking because M often needed more of our time, or that it was learned behaviour from M, and so, D got into trouble rather than got understood. We did eventually wake up to the fact that his behaviour was also a little abstract which is why we seeked help from our health visitor and then having explored all avenues of basic bad behaviour, our GP. D’s diagnosis was far quicker than D’s with the psychologist commenting he presented as a child with aspergers, which is what she diagnosed him to be, after just a 45 minutes one on one session with him. Most people are shocked when D’s condition is mentioned to them as he can be the sweetest little boy in the world, he is eager to please, and just quietly agreeable. They don’t of course see the major tantrums and meltdowns that he has as a result of holding it together so well. School is therefore a difficult place for him. He holds everything together from the moment he enters the playground in the morning, until we leave it at the other end of the day. I think for  anyone holding their emotions in check for that long, it is understood when they loosen the strangle hold. It can not be an easy thing for him, but I think he would be devastated if his teacher saw his other persona.

I therefore count my blessings that M got his diagnosis in place before school started and has therefore had the chance to be understood at school. I am pleased that D can be a studious wee man and enjoy learning, even if he pays the meltdown price when is the safety zone at home. I am lucky we have people around us who are understanding on the most part. Those that don’t try to understand or don’t accept the situation tend to be distanced from the boys as their input in not helpful and rather unhealthy for my children. I feel blessed that on the whole I can try my hardest to find ways to help my children learn to cope in a society that finds their behaviour not always acceptable. I have two loving charming children who I adore. They are well-adjusted boys despite their problems, and for that I am truly thankful.

So, the reason I feel for the lady I spoke to  is because it must be harder to cope with the diagnostic process as the child gets older. Should they get a label for their child, it will mean re-evaluating the way they are as parents, which as routines get set in place over the years can only get harder. I hope they can find help whatever the outcome of the assessments.

For me though, I will continue to run around after my boys, and my mother, because that’s just what I do!

Ready for the end of term.

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Some days I feel I can’t do right for doing wrong. Today is one of those day!

D has been delicate for a few weeks now – http://jas2jar.wordpress.com/2014/10/03/self-pity-or-self-preservation/ He seems to have been a little less upset this last few days, but he is still up tight. I am just glad tomorrow is the end of term, as I think he his more than ready for the break. For a couple of weeks, his teacher has been out of class a lot of the time, and they have had a substitute teacher. I think this has effected him more than he is actually letting on. He totally adores his regular teacher, as she engages him, by talking about his passions – namely, Star Wars! He is not the only one of his class missing her, one of the girls who sits at his table, told me how when the teacher had come into the class, she had thrown her arms around her – I just think it is so wonderful for kids to have a teacher they can care about, respect, and ultimately learn because she makes them want to, she is a great person for that! In one breath D will be telling you how much he hates school, and in the next, talking about what he will do when he goes to University! He is a bright child, and I do sometimes think because he wants to be just like other kids, he doesn’t push himself as much as he could, but he excels at maths, and reading, and since the work the occupational therapists did with his hands, his writing is becoming far more legible!     He is however still in a very volatile state of mind.    This morning he had a screaming session at me on the way to school because I separated him and his brother who were having fisticuffs as we walked along.    I had his bag thrown at me, as he told be to go away and leave him alone.   Of course, I can’t do that, and when I raise my voice to try to calm him, I become the enemy even more, and I look to all going past, like I am the aggressor, rather than trying to speak calmly and rationally to a child on the verge of meltdown – all be it in a slightly louder than usual tone to be heard!      We got to school, with him grunting and growling at me, but he soon mellowed when he saw his chums.   I did tell him he would need to lose the attitude before his teacher came out, as she didn’t need to see that side of him to which he responded that it wouldn’t be his teacher again!   I just hope for the sake of whoever takes their class today he calms down.

Earlier in the week, the school had an open afternoon to show how they were teaching maths in the classroom. I suppose a way to show the parents and carers that maths can be fun! Luckily in our household, we all have number brains, so it has never been something the kids have been frightened of, but instead they have both shown great aptitude for, some may put that down to their logical ASD brains. It was however an interesting afternoon as we, as parents don’t often get to see our children in their working environment, even though having people wandering about, doesn’t make it a totally normal experience for them. I first went into D’s class and he was so excited to see me, which was lovely. He was allowed to show me around the classroom, including the TARDIS sitting in the corner – their project this term has been houses, and I suppose that is The Doctors home! He then took me to his table to show me the work he was doing. They were doing measuring with rulers – they had lines on a sheet of paper that they had to label the length of. He was whizzing through it. They then had a task of writing sums that added up to 100, which was very interesting to observe. D started with 0+100=100, and continued with 1+99=100 and carried on with the pattern – very logical organised thought process and yet the 2 girls sitting at his table – yes his table is him and 3 girls usually, were writing random sums – both ways were achieving what they had been asked to do, however, I thought D’s way was not only logical, but much easier, as he was filling his page with sums rapidly as he just went with the pattern. The class was taken to sit on the floor at the front, as the teacher started to explain the principles of working out area, and it was interesting to again observe D, he was sitting on the edge of the group, almost hiding behind a table, rather than being in the thick of it, and as the teacher asked questions, hands were flying up, but not his, instead he waited to be directly asked, and was able to answer. I left his class, satisfied, he was doing well, but a little saddened when I think that if the school had the resources to allow for classroom assistants, he could really be flying as I do believe he is treading water with some of the things he is doing.   He is a clever lad, which his teacher can see but she only has so many hours in the day to push almost 30 children into achieving their potential.

I then went to M’s class, and he was initially horrified to see me, but soon calmed down, and was happily showing me what he was doing. His class was broken into groups, who were doing different maths tasks. The noise was unbearable, and I do wonder how any of the kids get any work done – I asked M later if it was always that noisy, and he said it was, and that was why he sometimes got into trouble for not doing his work because he couldn’t think – last year his classroom had a quiet area that he could take himself off to when things became too much, but nothing like this at the moment. As I spent time in his class, I felt proud of him, because he was still achieving with little, or no support, apart from his two friends who do keep him right in class. I also felt extremely sad for him, that he was left to his own devises so much when with support and encouragement he has previously proved he can achieve good work. Before witnessing him alone in a room full of people, I had already spoken to the depute, who was his wonderful class teacher last year, about arranging a meeting to talk about the lack of support. With a new SEN teacher due to start – they have been without one this educational year, it was agreed to wait until the second week of the new term, so she could at least meet M before attending a meeting to discuss him. I just feel that after the educational system failing him for the first 3 years of his school life, he shone last year with a brilliant teacher, who admitted she didn’t really understand autism, but still she nurtured him into a boy who would do anything for her. I don’t want to let him slide back to a boy who switches off because he feels there is no point in trying when nobody cares. His maths work is brilliant, his writing is coming along – he just needs to learn to let his brain and hand work together otherwise what comes from his pen doesn’t always make sense, and then he becomes frustrated and confused. He does have problems with his reading, and is getting support for that – his problems came when nobody would believe him in P2/3 that he was struggling and just put it down to  lack of confidence, but by the time they acknowledged he was falling behind, he had lost interest, so it was a case of almost going back to basics, but with support and books that engaged him, he reconnected. This term however the reading load has overwhelmed him. He has the book he gets on a weekly basis from his reading coach, and these push him and that sometimes make him angry and agitated. The class has also had a novel to read, which I and other parents I have spoken to believe is way beyond them, the teacher says it is to help them learn comprehension, and be able to look up words they don’t understand, and that we are to read it with them to help, but M has become so stressed by it, that I haven’t dared to remove it from his school bag. Also, one of their pieces of work has been to write a book report on a novel of their choosing from the school library. M chose a Horrid Henry book, because “I always read them to him!” I explained to him, that it was his reading project but I would read it with him, and not for him! We do it in a fun way, and all the characters have voices, by taking it in turns on the dialogue, he doesn’t realise how much he is actually reading. We have however only managed to read about half of this book. There is only so much reading you can force onto a child that really doesn’t enjoy it – I speak from experience there as someone who has never like reading, and I still don’t – I have explained to M that I understand that he doesn’t enjoy books, but that reading isn’t just about sitting down with a novel, it’s about reading the instructions on games he’s playing, it’s about reading his magazines, that reading is something we take for granted in everyday life and he will struggle if he doesn’t work at it.

So all in all, it is a good job tomorrow is the last day of term. I think both boys are ready for the break, and I am more than happy to remove the morning rows about getting clothes on or be sent to school in their PJ’s, and the after school rows about homework before computer games! Hopefully they will recharge their batteries, and go back to school in two weeks much calmer, happier and ready to stuff their brilliant minds with more information.

Lack of joined up thinking.

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My Mum is still in bed, and it looks as if she will be that way for a while!

The community nurses have been visiting her every day to change the dressing on her abscess wound, and they are very happy with how that is healing. It is the rest of her health there seems to be some confusion over. One of the nurses has been very helpful with trying to get someone to take her mobility issues sorted, but the wheels of the NHS move very slowly, or that’s the way it is feeling right now.

The physio was unable to do anything for her, as it is not a problem with the muscles but with the bones. the zimmer frame though has been a god send as it has meant she is now able to drag herself along the passage to the toilet during the day – at night she is using the commode they supplied as it is safer than her trying to move about when she is not fully awake.

Then she received a letter from the orthopaedic department, stating that she had said she was unavailable until after 22 December! This of course was total nonsense, as she had said she would go in with little notice – I had gone into her pre-op appointment with her, to make sure she wasn’t confused, so I know exactly what was said then. The nurse arrived just after the letter, and she said she would take it to the surgery and have it looked into.

Yesterday evening, I was just about to serve tea, when a sour faced Doctor arrives. She barked that she was here to see my Mum, and I showed her up the stairs. When she came back down, she said she was surprised that Old Person was not as unwell as she had been led to believe! This just shocked me. How can an 88-year-old, that is in so much pain she is not getting out of bed meant to look? The doctor did however agree to request x-rays of the hip, but we are not to expect them immediately. I just want to know how they expect me to get her down the stairs, and into a car, where she will sit for over half and hour, to get her to the hospital for x-rays. They are going to need to send an ambulance for her to attend. When I went up to see Old Person after the doctor had left, she was quite upset by the way the way she had spoken to. She said that the doctor had stood at the foot of her bed, arms folded and told her to explain why she was in bed! It makes me so angry this lack of care and consideration to anyone, but to someone of that age who has never taken to her bed before, it is totally out-of-order. My only assumption was that the Doctor was not happy at a nurse having told her that a patient needed to be seen. Internal politics are not part of anyones game, but getting better is!

This morning there was a phone call, from the surgery to say the doctor had checked on when the operation would happen, and it would be January at the earliest. Three months from now! That’s just not acceptable, and I told the person on the phone this. She said she was just relaying information, and if I wanted to speak directly to the hospital about it, then I could. I of course made that phone call immediately! I was told the system stated that Old Person had said she wasn’t available this year, and that was why January was being spoken about and that it had been specified she would only have one particular surgeon. I said that to be pain-free and mobile again she would go in this afternoon and let the cleaner do it! The person I was talking to laughed! She said she would correct the information on the system and speak to her supervisor about it. I was so angry by the time I put the phone down, I was close to tears – I can’t help it, when I get upset, I can’t help but get emotional. About half an hour later I got another call. This time, I am told that until she has had a heart scan at the end of this month, they cant put her on the system as being eligible for the operation, as until the results of that are known, she is seen as unfit. I explained that she had this done 2 weeks ago when she had the abscess drained, and therefore did she need another one? Apparently the information from that hasn’t yet been loaded onto the system, and until it is, they will assume she will attend for a heart scan on the 29th.

I put the phone down totally exasperated. If we had just taken her to A&E when this first started, we would have at least got somewhere by now, but by using the system correctly, we are being messed about by absolutely everyone. Nobody wants to take responsibility to get her up and about. I seriously wonder if the attitude is that at her age, if they leave it long enough she will be dead before they actually have to do anything.

I will give it another day to hear about the x-rays then I am going to start making a nuisance of myself, calling the surgery every day, and asking for doctors to come out to see her, until somebody actually does something.

The boys break up for holidays on Friday, and it will be so unfair on them if I say nobody can come around to play because of disturbing their Granny. We are also meant to be going on holiday the second week, and while Hubbys Mum has said she will come over and babysit Old Person for us, she isn’t exactly in the best of health to be up and down the stairs with meals and drinks, let alone asking her to empty the commode. It will break the boys hearts if we have to rethink our plans, but it’s looking that way at the moment.

I just wish someone would make a decision to do something, otherwise we might just have to find some way of getting her to the hospital and saying sort her out. It is just so frustrating.

Cheddar day.

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Saturday was the day we have been waiting for. Finally, Cheddar day had arrived. For those of you that don’t understand this comment, please have a look at my previous post about our current obsession with making cheese – http://jas2jar.wordpress.com/2014/09/21/a-cheesey-obsession/

D was very excited by the prospect of trying his cheddar. I was very excited about trying the cheddar if we are going to talk like this.    It seemed to have been a long time coming, but it was finally here.

I removed the wax to reveal a perfect round of pale cream cheese. It looked beautiful, and it smelled like cheese – I know that’s what it should have smelled like, but I was happy it did!!       It is amazing to think a couple of short weeks ago, this was just a couple of bottles of milk.

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It cut like a dream, and was a great texture, a little bit spongey, but quite dry, I suppose one step away from being crumbly!      Then the moment of truth.   The taste test.     I thought it was quite sour, almost like a goats cheese sort of flavour.   I suppose that is due to it being so young, and the mellowness will come with aging.      D wasn’t so complimentary, and just said he didn’t like it!     the one thing you are always guaranteed from an ASD child is brutal honesty about likes and dislikes!      I think the next cheddar we try will have to mature for much longer before we crack it open.       This was however really tasty with pickle in a sandwich!

I am not put off by D’s negativity towards the cheese, as I know and understand where it is coming from.    The flavour was not what he was expecting, and the sourness gave it a strength he just was not used to.  We do have another red Leicester on the go, and that will be ready in a couple of weeks, and he knows he likes that and will be happy to tuck into that.

I think with all new hobbies we take on, we have to learn how to work with them, and that is what I am finding with the cheese making.     I will continue with trial and error to make different varieties, but sick with the one we know everyone likes for our basic household cheese.       As we learn and become more adventurous, who knows what we might end up producing!

I am still blown away by how easy this has been, and I would recommend anyone to have a go, if they have the time and the patience.