25. End of Financial year pressures

My 90 year old mother receives care in the form of cleaning.  Other than that she does everything else herself.  That’s cooking, bathing and dressing herself, laundry, even changing the beds.

However, the government has squeezed local authorities so much that they are taking the little they give the people at the bottom.  I received a call from a local authority finance worker who I have dealt with before.  She is like the grim reaper!  You can guarantee that she will take away whatever little one might already be receiving in care.  The disgusting thing about governments from time immemorial is that all those of pensionable age can claim a free bus pass. Rich and poor can receive child benefit for children under the age of 16 and the elderly over a certain age can receive a winter fuel payment.  None of this is means tested, meaning that a rich pensioner can claim all of these things. Many do and add it to their investment pots for their children and grandchildren. By the time these grandchildren go to university their fees are paid for by these benefits!  In the meantime the government and local authorities are making cuts from the bottom, taking from people who have little and need more.

Today while I worked from home, a cleaner turned up unannounced from a new care company.  No notice was given informing us that my mother’s previous company was no longer providing care. Is  social services so overwhelmed that they cannot alert the cared for person?  My reason for asking is that without being alerted my mother could be letting anyone in. As we approach the end of the financial year, the local authority is looking to prepare its books for the start of the new financial year in April.  While I always welcome in a new year, I am starting to do so with a sense of dread as the first three months of it are hell.  I pay a tax bill in January and in March I am bombarded with local authority paperwork which includes increases in payments for services which others are managing to wangle for free.  The key seems to be that if you have medical/health needs, it is important to declare them and request as much help as possible.  If you don’t and seem able to manage, the local authority refuses to provide basic care.  In short, things have to be at either extreme of the spectrum – nothing at all is required or all is required.  If you need some help you are unlikely to get any help.

Posted in Autism Spectrum Disorder

24. Ill

I am recovering from the worst of a week of flu.  Australian or Japanese, I don’t know which one I had, but this year flu has had a massive impact in the UK, as young and old have died of sepsis, following a bout.

I always laugh at people who claim to have had the flu for one day!  It almost implies that if you are ill for more than one day then you must be milking the situation!. There is a real difference between the flu and a heavy cold and only those who have had flu know the difference.  My mother also suffered a bout of flu at the same time. Unfortunately, I may have passed it on to her.  There have been times during this week when I have felt scared for her, as she seemed to give up, not wanting to eat or drink.  Having spent a few days in bed in and out of sleep, I have asked myself if I would come through this.  This is when the issue of my mortality comes to the fore, especially as a Carer.  Funnily enough, it is then that my sister seems stronger.

I contacted the doctor’s surgery while at home this week and was stopped from seeing the doctor by the latest deterrent cutting numbers at the GP surgery – the receptionist!  They have absolutely no medical training, some have little education, but they think nothing of telling you that you don’t need to see a doctor.  I have no desire to tell ‘Joe or Joanna Bloggs’ what I am suffering from, as they are local people and could be discussing my health with one of my neighbours. Had I gotten the emergency appointment I was after I would have had to attend the surgery at 8am to collect an appointment ticket, allowing me to take my mother back at the allotted time to see the doctor.  Those telephoning for an appointment have little to no chance of getting one, as patients start queueing for these spaces at 8am and the phones are not answered until 8:30am.  I collected the last appointment at 08:10am.  I then got my sister to take my mother to the appointment later that morning, while I dragged myself in to work with a bloodshot eye, a result of prolonged coughing. It has taken my sister over 6 weeks to recover from the flu and she had the flu jab.

A number of people at work went down with something this week, so a lot of people were off.  I may have dragged myself in too early, but it allowed me to clear some work out of the way.  I returned home to find my mother had been prescribed antibiotics.  This is the one product that public announcements tell you is not being prescribed by doctors as readily.  The receptionist told me nothing can be done once you have the flu.  Had she not espoused such rubbish my mother could have been seen earlier in the week while I was off.  I now wait for my mother’s body to kick in it’s own form of self-healing with the assistance of antibiotics and a number of devices to help clear the lungs.


Posted in Autism Spectrum Disorder

23. Doubting Thomas’ responsible for ensuring a duty of care towards my niece

I took my niece back to school last week by train.  The idea is that she learns to travel with school friends, but should she find herself cut off from them that she knows what to do. Unfortunately, she was suffering symptoms of developing a cold – dizziness, a headache with the accompanying grumpiness.  All my plans to prepare her went out the window as the poor thing slept on the train.

We were the first to arrive at the house, a concern for me when any young person is returning to school by themselves.  I stayed with her as she revealed that she had been unable to access her homework link while at home, because it wasn’t working.  The wifi at the school needs updating.  Tortoises move quicker.

The next day my sister sent me a text informing me that my niece had dizzy spells, a headache, etc.  I immediately contacted the house matron, who said that my niece had remained off school as she was not feeling well.  However, the matron’s response surprised me.  She did not believe my niece and thought it was anxiety because my niece did not have a temperature.  Fortunately, my background as a Medical Herbalist allowed me sufficient knowledge to suggest to the matron that the symptoms displayed were more in line with my niece fighting a cold.  I asked the matron to get dispersible vitamin C with zinc.  I would post echinacea, not to relieve the cold but to strengthen her immune system.  I later received an email from the matron updating me about my niece’s condition, but adamant that she felt nothing was wrong!  Who are these people? During the week the cold showed itself and my niece sounded hoarse when we spoke on the phone.  One of the traits in children/youngsters with high functioning autism/aspergers is that they find it difficult to lie.  For some reason my niece is often disbelieved – I really do not know why, but I and the rest of her family believe her and believe in her, thank God!

Posted in Autism Spectrum Disorder

22. Back to School

I took my niece back to boarding school on Monday.  The house was busy with all the girls returning at once.  My niece is in a new room with girls she has not shared with before.  I could see she wanted to join in the conversations that were going on, but the girls were talking amongst themselves.  I felt for my niece.  There is a very mature girl in the new room who is extremely popular.  In the short space of time I was helping my niece to unpack, this girl had visits from three or four other girls who all stopped by to say ‘hello’ and give her a hug.  Again I felt for my niece and myself.  How wonderful it must feel to be popular?  I hope my niece watches and learns from this girl. What is very compelling about humans is that they will often speak with their core group, but it takes a special person to be inclined to draw others who are on the periphery, in to the conversation.

I spent 5 hours last night completing a government document to get some help for my niece so that she can acquire an app called ‘Brain in Hand’ to help her during moments of anxiety.  It had taken me 3 attempts to complete this form over a number of weeks, partly because I was mentally exhausted half way through trying to complete it, didn’t have the relevant documents to hand and had to remember the difficulties my niece had over the years.  I always think the aim of such documents is to put you off completing them, hence the number of questions – 71 in this case! It was heart-wrenching going over the documents which I had to submit as evidence.  In one, a speech and language therapist had interviewed my niece’s primary school class teacher who had stated that my niece would ‘make comments that were inappropriate, irrelevant or hurtful without meaning to’.  Amazingly, it never occurred to this same teacher or the school that there might be a cognitive problem with the child.  Just that there might be a problem at home. Interestingly the speech and language therapist who suspected my niece was on the autistic spectrum, was a regular member of a team of visiting therapists associated with her school.  The UK system is set in such a way that in order for the local government to save money, children can only access help from a speech and language therapist c/o the school if they have a Statement of Educational Needs (SEN).  As children with high functioning autism are unlikely to have a problem learning, they will not flag up as needing a Statement and therefore not get the help of a speech and language therapist via the school.

Posted in Autism Spectrum Disorder

21. Needing more than 24 hours in a day.

Time with family is so precious and I always take Christmas off so that we spend it together.  This year I have been run off my feet.  There does not seem to be enough time in the day to get through all I have to do.  I can be up and working through things from 9am and still be there at 11pm, which is my cut off time for sleep.  I have been playing catch-up this Christmas, dealing with all the things I’ve had to put off most of the year due to work!  As the holiday season comes to a close, the demands on my time have been such that I still have major things outstanding.  My niece has to make GSCE choices by the end of the January.  My nephew requires an educational psychological assessment, so that he can access help as a disabled student.  Would you believe it, if a child has had an ed psych assessment before 15 years of age, the university will not accept the report which allows the student to access help.  This applies specifically to dyslexic and dyspraxic students.  Therefore you have to pay for another assessment.  I have yet to find out the reason behind this, but once discovered will add it to this blog.

It was interesting to note my niece this Christmas.  When she received something she had expected, she did not display a flicker of excitement.  In contrast, when she received a gift that she did not expect, she was over the moon.  Happy New Year!

Posted in Autism Spectrum Disorder

20. Work 1 – my hand in the lion’s mouth

Having worked part-time for two years to accommodate my caring duties, I have recently taken on a new full-time role now that my niece is at boarding school.  I am about to complete my probationary period, but just as I am learning the role the rug is being pulled from underneath me and the goal-posts moved.

At each stage of my working life I have constantly had to prove myself, even though I work my guts out while making positive changes to improve the role. Today I was informed by my new boss who has only been in the role for 5 weeks, that he is looking at having my probationary period extended because he has only known me for 5 weeks.  Therefore he does not feel able to sign off my probation at this present time.  He also wants me to re-write my job description. Is that legal?  What does his appointment have to do with my probationary period? I work for the company and he is not named in my contract!

At the time of being offered the role, there were two other identical roles based in two other departments. All three shared the same job description  The other two successful candidates are not having their probationary periods extended or job descriptions changed, even though the job description does not reflect what we do. My boss wishes to remove a role which I line manage and incorporate it as part of my role, increasing my workload.

When he joined the department 5 weeks ago my boss reviewed all management roles upwards, noting that it was important for staff to have a work/life balance.  Today he informed me that my new workload will be full on and is likely to be tough to fulfil!  Is this the same man, or does a work/life balance not apply to me?

As the weeks go by it has not been lost on me that he is gradually becoming pally with one of the department leads who recently revealed that he is a freemason.  The first complaint of this department lead was that he and his contemporaries were not considered for my boss’ role, when our previous boss announced her departure. According to some, I had a meteoric rise into my new role shortly after joining the company.  I was never sure if this department lead was comfortable with that, as I heard him complain on many an occasion that current staff were rarely selected for new roles.  To be fair this was at a time when the organisation had taken on a large number of highly paid contractors to take it through an expensive process which never happened called ‘Transformation’; a more appropriate term would be restructuring.

I deliberately choose never to inform those I work with that I am a Carer, as in the past I have found that part of their power trip is about control. An example of what I have previously experienced is:                                                                                                               ‘Caroline, you are doing an amazing job.  However, as your sister is unwell we thought it would be better if we demoted you to the ‘shitty job’ beneath the one you have been brilliant at.  Instead I would like to bring someone of my own choosing into the role. That will give you more time to look after your sister! Oh by the way, we expect you to do a handover and teach the next person everything you know!’                                                                              God knows how they would behave if they also discovered that I have a niece on the autistic spectrum and an elderly, sight and hearing impaired mother moving closer towards her maker.  Of course I immediately did some employment law research and as I guessed, a probationary period cannot be extended unless evidence shows you have been underperforming.  The fact that my previous boss left and another has only been in the role for 5 weeks has nothing to do with me!

Based on the statistics that only 16% of people on the autism spectrum are in employment, I fear for my niece and nephew when they delve into the world of employment.  It is difficult enough as a neuro-typical person trying to navigate one’s way through what is going on in the minds of colleagues, let alone managers. Those in power often have their own agenda which is more inclined to benefit them rather than the organisation, without considering how their behaviour and decisions impact others lives! It is hard to gauge whether or not they like you, just want to make a clean sweep, or wish to bring in their cronies!


Posted in Autism Spectrum Disorder

19. The negative connotations of Autism

My beautiful niece is now ensconced at boarding school, thanks to a few amazing people who believed in her and fought for her to get there.  Prior to making an application to the school, I went to see the Deputy Head.  Her response was a negative one.  Maybe her view was stereotypical e.g. melt-downs, socially isolated, obsessed with a singular interest, who knows.  She informed me that the school had some children with autism, but did not seem keen on me making an application for my niece.  I partly put this down to the fact that  her brother who was leaving the school that year, was not the over-confident pupil he was expected to be.  Even though he achieved the results needed he had to be cajoled and did not take part in the rest of school life much, except for music. For parents or other relatives like myself, the same old situation continues to rear it’s ugly head – that the younger siblings are tainted with the same brush as the ones who have gone before.  My niece and nephew are nothing like each other either in personality or academically.  My niece is a stickler for detail and has a mathematical and scientific brain.  She is a lot more confident and outgoing than her quieter brother, for whom still waters run deep.

Earlier this year, after offering my niece a place, the school contacted me very late into the academic year to inform me that they had changed their minds and would no longer retain a place for her.  Their reason – they felt that she would struggle to fit in with the forthcoming year of robust girls.  All this after they had observed my niece in her junior school, spoken to her teachers and she had passed the entrance exam.  The Head of my niece’s school was already aware of the situation, when I contacted her the following day.  On hearing that I had refused to accept their reasons for discriminating against my niece, she got on with making a case for the new school to have a re-think.  I contacted a few organisations that dealt with children who had special needs or additional learning requirements, none of which applied to my niece. They could do nothing unless it was a state school. It was at this point it became clear that central and local government regulations are for state schools, thereby preventing such behaviour.  Private schools function as independent charities, therefore are answerable to no one except their trustees and are at liberty to do what they like.  It turned out that the Head of my niece’s school had a network of contacts, including knowing a trustee at the new school. The case was made for inclusivity and by June we were assured that she would be attending the new school come September.  Throughout this time I kept this news secret from my niece and sister.  What was the point of adding to my sister’s anxiety and lowering my niece’s self-esteem?

‘Why would you still want to send your niece to such a school?’ I hear you say.  Well, it would be very clear to those involved at the new school, that they would be under the spotlight.  Furthermore the Head of my niece’s junior school might be wary of recommending this school to others.  In order to shore up my argument as to why she should retain her place, I utilised the assistance of the hands-off extended family, who lived close to the school, so that they would accommodate her short-term should she  have a meltdown or struggle to cope on the odd occasion.

One week into the new school term, the matron informed me that my niece fitted in well and was one of the girls.  It became clear that my niece embraced her new life as she was  no longer living in isolation outside of school and was kept busy throughout the day.  A child/adult with high functioning autism is rarely late for a lesson and is a stickler for the rules, sometimes taking them a bit too literally.  The ridiculous thing is that the fears the new school had about my niece fitting in and possible negative behaviours, could relate to any neuro-typical child at any school.  The label ‘Autism’ can bring to the fore negative connotations for those with little knowledge and/or experience of what it means for each individual and their families, living with the condition.

Posted in Autism Spectrum Disorder