27. Biting my tongue

I collected my niece from school yesterday.  Prior to leaving the area for London I had to run around the shops.  Faced with an unfamiliar layout I asked for help to find the items I needed.  Alongside me just behind my ear was this noise, .  ‘You said we were only getting one thing!……..’Why are you asking for pistachios, you said you only wanted a cucumber?’  and so on.  The shop assistant who was trying to assist me gave me a sympathetic look.  I understand that the poor child wanted to get home, however as I informed her, I had to get things for other members of the family.  Life was not just about her. It took us 3 hours to get home, as it was a bank holiday weekend and everyone was going somewhere.

I am an impatient driver and cannot stand traffic jams.  So after driving at a snails pace for the longest while and seeing an equally long queue ahead, I came off the motorway at the next slip road stopping at a petrol station to ask for directions.  It had been hot for the first time in a long time.  In fact the whole weekend was forecast to be hot, so I bought a drink for my niece and what I thought was an ice lolly for myself.  However, it turned out to be ice cream.  As I am trying to avoid dairy I expressed my desire to change it.  My intention was thrown off course by my niece’s nagging and being 1 hour behind the destined time of arrival, I consumed the ice cream.  Amazingly our journey on the alternative route home was traffic free.  When we finally arrived home I had my niece try on a pair of light-weight shoes for school.  I find the hardest thing about my niece is her immediate rejection of anything that has either been bought for her or suggested.  From my perspective one of the difficulties in dealing with someone with high functioning autism is they are adamant they are right. That can be quite draining as there is little room for discussion of opinions.  She rejected the shoes, she rejected some beautiful slippers her mother bought for her, etc.  I managed to bite my tongue throughout this 3 hour ordeal, sorry journey, knowing that if I lost it the poor child would be very hurt and confused, having not foreseen the likely impact of her behaviour.

When she was three and undiagnosed, she was adamant that she would not do ballet classes.  The reason I tried but failed to encourage her to take up ballet, was because it is great for setting a child’s posture.  At six she was adamant that she did not want to go to drama classes.  When I could not locate the drama school, she was elated that I was lost! A hint at her condition was when she finished her first drama class, she asked if she could attend the next one?  I was confused by the change of mind but thought this was just a difficult child with a strong will.  However, unbeknown to us autism was showing itself in the form of anxiety.

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26. In ‘Fixer’ mode

En route to my mother’s today, I stopped by my sister’s.  After knocking gently a few times and not receiving an answer, I eventually rang the doorbell only for it to be answered by a sleepy nephew.  My sister was out.

While my nephew disappeared back to bed, I took the opportunity to look around my sister’s house in her absence.  Although upset, I was not surprised by what I had long ago suspected. My sister is struggling to cope!.  This presents itself as hoarding.   Upstairs I could not see the floor in her bedroom.  The landing was covered with bags full of items and the kitchen, which I am already familiar with, houses racks of wet newly washed clothes.  One of my sister’s OCD traits is to constantly wash clothes.  The washing machine is always on. There will often be one piece of clothing in the washing machine that has only been worn once.  I took a number of photographs and asked my nephew not to let his mother know that I had been in the house.  I had already sent her a text to say I would be dropping by unaware that she was not in. Now I sent her one saying that I had been informed she was not in and left.  Now I was in fixer mode. Unlike other things that have reared their ugly heads over my lifetime, multiple sclerosis is something that I cannot fix!  However, I can attempt to fix my sister’s uncoordinated care by the medical profession, social services and others who are in control of her life.  As well as only dealing with symptoms, various sections of the medical profession works in silos and laughingly will often ask my cognitively impaired sister what recent appointments she has undergone and the outcomes!

I made my way to a well known London university where I spent half the day at an MS Society seminar updating MS sufferers, relatives and professionals about the latest research and drug treatments.  In the UK there are 100,000 people with MS, which affect three times as many women as it does men. 100 people are diagnosed each week and 75% are unable ever to work again.

Researchers worldwide are looking at how to stop MS via 1) immunomodulation – stopping immune system attacks, 2) neuroprotection – protecting nerve cells and 3) myelin sheath repair – replacing lost myelin.  Combining these three therapies would be the ideal scenario.

Fatigue is the biggest problem that MS sufferers have to deal with and my sister’s biggest problem.  Bladder problems affect 70% of people with MS.  There is no single cause of MS but there are many factors that influence the chance of developing the condition.  For example, if you have grown up in the UK you have a 1 in 330 chance of developing MS.  If you have a parent with MS it is 1 in 76 and 1 in 37 if you have a sibling with MS.  Researchers have also acknowledged that infections such as Epstein Barr virus, which causes glandular fever predominantly during teenage years, is a contributing factor.

I was informed about a number of programmes such as the CRAMMS trial which focussed on cognition, memory, decision making and concentration.  This tests whether group cognition rehabilitation sessions can improve memory and cognition.  MS LEAP looks at the benefits of resistance exercise, which has been shown to improve fatigue.

Developing treatments for energy: 1) Ocrelizumab – is for those with early stage primary progressive MS (PPMS) and relapsing remitting MS (RRMS). 2) Siponimod – for secondary progressive MS (SPMS)

Myelin Repair:  Bexarotene – which has been used as a cancer drug.  Trials are underway on those with RRMS

Neuroprotection: MS SMART Phase 2 trial which could slow progression of the disease

Slowing brain shrinkage: Simvastatin, a well known drug used to reduce high cholesterol. The trial is presently in the recruitment phase.

Stem cell therapy, which involves chemotherapy was also discussed and is only prescribed for people with highly active RRMS.  The MS Society’s criteria for ‘highly active RRMS’ is two relapses during the last year.  There is currently research underway looking at a more moderate chemotherapy centred stem cell therapy

New drug treatments presently undergoing trials are Alemtuzamab to slow disability.

A brief discussion was held on diet, although there is little research here.  Discussion focussed on the Wahls and Paleo diet.  Obesity also increases the risk of developing MS and of faster deterioration.

Following the seminar I made a GP appointment to discuss my sister’s mental state. I had requested that social services reopen her case, which should never have been closed in the first place. Lazy social workers felt that my sister’s answers to questions deemed her capable of looking after herself. They had failed to look around her property where they should have drawn the same conclusions I did.  I also left a message to speak to her neuropsychiatrist, whose treatment stance is to ‘try a different drug until he finds one that works’. In other words – it’s all guess work!  In this age of precision medicine, surely there must be a more scientifically advanced way of matching an anti-depressant to the patient?.  I left the seminar drained but armed with the speakers details, as she had offered to put me in touch with a team that could suggest consultants and MS nurses who offered a more coordinated approach to patients’ treatments.  Fingers crossed!


Posted in Autism Spectrum Disorder

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