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.

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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!

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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

18. The Services (or lack of)

While my sister pays for a private company to clean for her, my elderly mother relies on contractors assigned by the council. Both offer an equally varied service. Last week the cleaner my sister had only cleaned half of the rooms. My mother has a different cleaner every week, most of whom don’t clean according to my mother’s wishes leaving my normally calm mother irate. Some of the cleaners visit and log more time than they actually do. Others arrive unable to read or speak English therefore cannot understand what they are being asked to do. Her recent but now regular cleaner thinks cleaning the toilet means putting toilet cleaner in the bowl and relying on the toilet water to do the rest, even though an unused toilet brush is adjacent to the toilet bowl. Eventually this comedy of errors resulted in me contacting the Commissioners.

Today we had a visit from the borough’s Complaints team and the manager from the care company. The woman from the Complaints team arrived on time. The other one got lost. When she called 30 minutes later still unable to locate the house, I went outside to meet her only to find her with hair blowing staring off into the distance, as though hailing from a scene of ‘Gone with the Wind!’

I started to get the measure of this woman when on sitting down underneath a dimmable upright lamp she muttered to the other woman, ‘I can’t see. I need light’. So I as if like Cecil B De Mille, produced more light by turning up the dimmable lights and proceeded to address the poor service received from her staff.  Her immediate response was ‘We can’t do that!’  After hearing this one too many times, I gave her the list of chores I had typed up for the different cleaners attending each week and asked her to tick what they could do.  The situation is that the cleaners are discouraged from touching ornaments to clean them or the surfaces around them, in case they break them which is why my mother’s ornaments are full of dust after a cleaner visits. They are not allowed to use splashable cleaning fluids in case they get burnt, etc.  One of my reasons for complaining was that my normally calm mother, whose blood pressure would rise at the slightest thing was finding the whole experience unbearable and was not worth her having a stroke for!.

One thing that came out of the meeting was the number of things that had not been put in place e.g. a device should have been installed in my mother’s home allowing the cleaners to log in and out while also making a written note of their times. The device had been removed, hence the reason why it was our word against the company’s when their staff logged more time than they did.

Posted in Autism Spectrum Disorder

17. Capability for Work questionnaire

I have been unable to write for a few months now, due to the emotional strain of having to fight through a number of events that have hit my family.  Writing a blog has been the last thing on my mind. I have often needed more than 24 hours to complete what I am required to do in a day.

After a number of life changes for those I look after, including myself, things have settled down.   I am now able to focus much more on my sister, who has MS.  My energy levels have been stretched and this is coming from someone who struggles with their energy.  Today I helped her complete a Capability to Work questionnaire (https://www.gov.uk/government/publications/capability-for-work-questionnaire).      A government requirement for disabled people to determine if they can work. What a horrible form!  No one who is seriously ill could possibly complete this form without assistance, due to the detail requested. Of course due to her fatigue, cognitive impairment, pain and other symptoms for which words are not enough, we spent over nearly three hours completing it.

Later I did some research online and found the organisation Turn2Us gave much more of an insight about what is expected.  I recommend looking at their website.  https://www.turn2us.org.uk/Benefit-guides/Work-Capability-Assessment/The-questionnaire-(ESA50).  One of the tips that came out of the information Turn2 Us gave is to ensure you describe what a ‘bad day’ is like.  I have read too many horror stories of disabled people having their benefits stopped and being told to find a job.  For me it is about ensuring the decision makers get a clear and true picture of what life is like for my sister. I don’t need any tick-boxing bureaucrat to tell her that she is capable of working, when she is presently struggling to stay alive!

Posted in Autism Spectrum Disorder

16. Theory of Mind

We took the son of a family friend I grew up with, who now lives abroad, out today.  Being Easter Monday it was great to drive through parts of London that are normally out of bounds.  However, most events require an entry fee and with four of us travelling around, that added up to a lot of money.  Our guest was already aware of the costs of things in London and had informed me that he aimed for places that allowed free access.  We tried to peer through the bodies of people queuing between the columns and the ticket desks of St. Paul’s Cathedral. I also tried contacting the verger of the cathedral to no avail.  Apparently, as a church attendee it is possible to get a pass to gain entry to the cathedral, but the verger also has to validate the entry.  From there we took our guest on a sightseeing tour of London’s modern high rise architecture, which proved to be of interest to him.  Finally, we ended up at the Science Museum.  The Natural History Museum had a slow moving, excessively long queue. I was told by staff that this was because it was a bank holiday.  Disappointingly the Science Museum had very little that was interactive. The Launch Pad on the top floor used to provide free access to a great interactive area of scientific learning for youngsters under 10.  That has been replaced by the ticketed Wonderlab.  Beyond that the museum is made up of exhibits showing the benefits science has had on mankind historically.

We ended up on the top floor where the three possibly fun-filled events were ticketed.  One area looked like a scene from a science fiction movie.  Males and females, most in dark clothing sat motionless with virtual reality (VR) headsets on, watching astronaut Tim Peake’s descent from space.  The privilege of seeing that was £7.  The other events on offer was a flight simulator and a 360 degree flight pod for £12.  My niece was ready to have a pod experience.  However, her brother and the young male guest were less keen.  What struck me was my niece’s reaction when I informed her that neither of them were interested in the 360 degree flight pod experience.  ‘Really!’ she exclaimed, shocked that that they did not want to do what she wanted to do. I watched interestingly as her brain computed this fact and hoped that this was another life lesson learnt.  One of many she is working through. I also suggested to her that maybe she needed to ask them if they wanted to join her before taking it for granted that they would.

Posted in Autism Spectrum Disorder