9. My child’s encounters with the other less well meaning children

I am gradually learning that my niece has a tendency to mislay things, has items taken from her locker at school or encounters classmates who do not return items she kindly lends out.  Money is tight in our family so it hurts when having gone the extra mile to purchase stationary for example, that things disappear as quickly as they are acquired.

In preparation for mock exams I spent a large part of my afternoon at her school collecting books and paperwork that she needed for revision over the weekend.  The reason I did this is that having succumbed to a virus she had the week off  at a crucial time of preparing for mock exams.  Sensory issues can be a factor for children and adults on the autistic spectrum. Trying to get the child to wear a hat, scarf or button up her school jacket is like pulling teeth. So when she complains that these accessories are itching her, I am on a losing streak trying to get her to wear them. However, the consequence is that her immune system can only do so much during the winter months, unless she assists it. Add classmates who bring their bugs to school into the mix and you have the unavoidable.  The additional consequence is that due to being immune suppressed her mother comes off badly.  She had every sort of ‘itis going, which contributed to a relapse of her MS.  I will attempt to highlight this fact to my niece, in order to get her to wear the clothing required to reduce such incidences. Otherwise I will have to source the small companies making clothes from specially impregnated fabrics for children with sensory issues. Children on the autistic spectrum supposedly lack empathy.  I do not think this is the case with my niece, but I do believe that she cannot think laterally enough to encompass what the consequences would be for her mother.

Back at the school it became apparent that the books and paperwork my niece believed were in her locker, were not.  I have now decided that no matter how gaudy it looks, all of her text books, paperwork and stationary, will have her name emblazoned across them in thick black ink pen.  Should she mislay it or should any boy or girl wish to help themselves to her things from her unlocked locker, they will have to account as to why her name is on their things.  I thought the clue was in the name, but none of the school lockers have locks on them!  Children like my niece, do not understand that they are being taken advantage of or what it means, as well as other children not being careful with her things. Therefore she is more likely to be open to abuse and exploitation.

Posted in Aspergers, Aspies, Autism Spectrum Disorder, Carers, MS, Multiple Sclerosis, Sensory issues

8. Choosing suitable shoes to combat poor posture and sensory issues

I spent most of the afternoon with my niece yesterday buying shoes.  Having been informed by a paediatric physiotherapist that she required a particular make of shoe in order to support her at the ankles and improve the way she walks, a shoe costing £70+ was suggested. However, even those shoes do not seem to do the job as many girls from a local school wear them and they eventually become misshapen forcing their legs to stick out in all directions! When my niece first tried these on she struggled to walk and looked so miserable. I too tried them on in order to get a feel of them and my feet felt encased in concrete.  Instead I purchased a £70 Mary-Jane style shoe from the range and asked my niece to walk around in them at home first.  2 months down the line she still did not find them comfortable, so I returned them.

In order to combat the sensory issues with regard to wearing shoes, the tendency is to go for trainer style ones, but these are not accepted by the school nor do they offer the support needed. Yesterday I found a pair of inexpensive shoes having applied the techniques suggested by the physio when shopping for a pair of shoes e.g. they should not be collapsable at the front or at the heel.   The sole was even throughout and solid. My niece considered them to be ugly but comfortable.

For school sports we visited a well known sports shop in search of trainers, using the same theory. My niece chose a pair from the New Balance range.  The sole is wider than the shoe – perfect in that it supports her feet correctly but also prevents the ankles from leaning in either direction.  This is turn improves her posture, as she slouches. Her wide feet means that I cannot rely on foot measurements but instead have to rely on her response to pain or comfort.

Posted in Autism Spectrum Disorder, Carers

7. Crisis management – a typical day

In mid-September of this year, having spent at least 10 weeks enjoying his summer holiday post exams, I received the news that with university about to start, my sister and nephew had not bought a thing in preparation!  Understandably my nephew was waiting patiently for notification of his student loan.  However, doing nothing in preparation made no sense to me.  As well as contacting the student finance company, I immediately contacted an acquaintance who had already been down this road.  Her son, who has since left university sent a list of things he had taken when he started.  With credit card in hand, I took my nephew to get the technology he needed that weekend, as well as items for kitting out his yet unseen room.  That well known Swedish store was a god-send, as well as my favourite store which is supposedly never-knowingly undersold. During the early part of the week I would rush every day after work to a handy high street store for the remaining reasonably priced items.  However, the toll it took on me was a severe upper back problem which I am only now just recovering from with weekly physio; most likely symbolic of the heavy load I am carrying.  Shopping distracted me from the pain somewhat until I fell into my hotel room at 8pm each night in this northern city. Notwithstanding the fact that the poor thing seemed unable to look beyond his nose, I got on with it.  I suppose he had no idea what to expect as he had not been in this position before.  The last thing I needed this far from home was a phone call saying he did not have something.  Most things I offered up or suggested, he did not think he needed, but I ignored him.  Better to have more than was required and take it back later.  I was impressed though when he suggested a tabletop fridge for his room.  What a good way of ensuring your food remains fresh and that no other hard up student takes your food in desperation. In halls with many students sharing a kitchen that is more than likely. Along with the rice cooker which my friend’s son suggested, he was on his way.  It is very difficult to deal with an 18 year old who one minute acts like the characters in Harry Enfield’s ‘Kevin & Perry’ and the next is your best friend. I also realised that the ‘Kevin & Perry’ behaviour is when he is at his most anxious and frustrated. He says few words and the silence means that in contrast I utter many!  At this point I gather he is ‘in his cave’, as informed by John Gray in one of his bestsellers ‘Men are from Mars…….’.  I feel very sorry for this poor young man in a world of ill and anxious females. With the exception of school and his friends with healthy father/son relationships, he has no healthy family male role models to turn to.

The drive took around 4 hours there and back.  I left him confident in the knowledge that he had already made new friends, found one of his friends from school and was meeting them for the provided meals in the campus dining room.  Once back in London I got to lying with my back against a hot water bottle and religiously taking the diazepam prescribed by my GP.  By now the seized back had moved on to a trapped nerve with some of the pain running intermittently down my arm. What came out of this was that this kind of crisis management would take its toll on my body.  Stress had found a weak spot – my back and shoulder!  It was a price I could ill-afford to pay, as who was going to look after me? Already as a carer my finances had been hit hard working part-time.  I had supported the children and in turn my sister, by filling in financial gaps to give them the things they needed such as school shoes, stationary, etc.  Prior to having MS my sister had often compensated an emotional need by wasting money on things such as make-up and toiletries (she has more of these than the high street pharmacy) and shoes – an item she needs less now that she is confined to her home.  These items take up a larger proportion of her bedroom and bathroom than any other and continue to grow.  All the while her children need and there is no forward planning from either of us, as I am crisis managing financially and emotionally and my sister is just floundering.

Now over a month has passed and I hope that my nephew is managing to get by.  However, this is where I agree with those who are pushing for financial education to be included in the curriculum.  I have no idea if my nephew is financially savvy as he comes from two emotionally immature, spendthrift parents. I can only suggest things to him.  Last year I enrolled on a short course about managing my money by the Christian group CAP (Christians Against Poverty).  While it was a brilliant course, I realised it could not address how to manage money if you are not earning enough or earning at all, which can be the case for many of us who are carers.

Posted in Autism Spectrum Disorder, Carers

6. In preparation for a new school term

We were given the news last week that my niece would be discharged from the psychologist’s care as his role is only to diagnose.  It was interesting watching her as the psychologist spoke to us about where we go from here.  It was clear to see that she had no concept of what was being said.  For the first time whilst dealing with that department, I felt that we left with some good information.  When I asked what advice he had for a child who was in denial about the condition, the psychologist’s response was to show her other females with the condition and he provided literature with links to such examples as Robyn Steward – an ambassador for the National Autistic Society, Temple Grandin – an American Professor of Animal Science.

The afternoon was spent trying on boot-styled shoes for school as recommended by a paediatric physiotherapist as my niece walks with one inner ankle heading towards the ground, while the outer ankle on the other foot does the same.  It is called pronation and supination.  Watching my niece as she walked around in the boot-styled shoes reminded me of the days when supermarkets used to have a statue outside their shops with a coin slot to take money for the ‘Spastics Society’ as it was crudely called in those days.  As a child I was always horrified by the one large black boot on the statue’s foot, bringing home the point that this was about disability.  Seeing my niece walking as though her feet were encased in cement while looking at me with tear-filled eyes, I thought it best to also try on the boots as she was close to my size.  What a horrible sensation!  I see so many school children wearing these boots. How do they manage?  Moving on to another shop with a wider range, I was pleased when she gave me the thumbs up while trying on a lighter weight, Mary-Jane style shoe from the same manufacturer. However, I will wait until the next physio appointment before deciding whether to buy these, as they do not offer any ankle support, which was the point of the exercise.

We have had words about hygiene – brushing her teeth properly and combing what was her beautiful long curly hair.  I made a bold decision a few weeks ago after spending nearly 4 hours pulling, tugging and eventually cutting out large matted parts of her hair that it would be best to keep it shorter and see how she copes as it grows.  Cutting out the matted hair which had arisen from knots and the hair doubling back on itself, had resulted in it being much shorter.  I eventually also worked out that she needed to pour mineral water over it during the final stages of washing, as London water is so hard that it contributes to the knot formation.  That plus a new brush with a mix of natural and nylon bristles seemed to do the trick.  As she looked in the mirror at her accidental new look at 11pm that night, she exclaimed ‘I can do this! We had not realised until then that due to sensory issues, the poor child had been struggling to wash and brush her hair.

Posted in Autism Spectrum Disorder, Carers, Sensory issues, Social Communication Disorder

5. Looking back

It has taken me a while to write this post, as I have dug down deep into what I know of my past family history to reevaluate the behaviours of relatives living and deceased, in order to draw a parallel with present day findings.  Autism is known to have a genetic link and it is for this reason that I felt the need to look back over time at my family history. The genetics passed down through generations of my family resulted in a few relatives showing signs of vulnerability, a rigid way of thinking, a lack of creative thinking, etc. Most demonstrated a victim mentality at various points throughout their lives.  Due to their cultural heritage family members were labelled as ‘mad’, ‘paranoid’, ‘schizophrenic’, etc, with detrimental results.  Yet the mislabelling of these behaviours under mental health is still likely to occur today.  Looking back much of the behaviour of these individuals has parallels with being on the autistic spectrum, especially as the majority of them were reasonably bright, holding down high level middle class jobs.  It was the result of how their nervous system functioned which ultimately brought shame upon them and our family over time.

Some of the behaviour with similarities to being on the autistic spectrum included that already mentioned, as well as the occasional lack of personal hygiene, what we know today as OCD type behaviour, ADHD, meltdowns, and a determination to dig their heels in. Family traits included talking a lot from a very young age, a great sense of humour, a youthful demeanour even in to their 90s and heightened anxiety – in fact this was at the core of their being. Some had sensory issues and all were intellectually above average. However, even though they were sociable, all struggled to integrate socially and be accepted by their peers.  Problems arose with neighbours, work colleagues, friends and family due to oversharing. For those of you not familiar with this term, this means giving away too much information about themselves and others, crossing boundaries and sociably unacceptable behaviour.  All were equally taken advantage of.  Some had many friends and some none at all.

There was and is also an aloof personality trait in some of these relatives.  A 1997 study in the journal Psychological Medicine found that parents of autistic individuals were ‘more aloof, tactless and unresponsive’ than those of non-autistic individuals. The inability to connect to their feelings is a common trait amongst some on the autistic spectrum. It also begs the question – how much of this is learnt behaviour?  If you live with a mother, father or sibling who is devoid of emotional expression because they do not know what they are feeling, how can you learn to do otherwise? Surely this must exacerbate what is already a genetic issue?

I can only be thankful that in 2016 the spotlight has been shone on Autism in the UK.  Those who have hacked in to USA security IT systems have brought it to the attention of the media and a recent television drama has highlighted the condition.  Well known cinemas have created autism-friendly environments so that people with this condition can enjoy watching movies. However, there is still a lot that needs to be done especially within education and the workplace. For example only 15% of people on the autistic spectrum are in work. With the exception of a small group of borough councils, I do not feel confident that special educational needs (SEN) cater for children on the autistic spectrum, nor that schools are willing to accept this type of child.  I am about to embark on the journey to find the next school for my niece, which includes the fight to get an EHCP (an Education, Health and Care plan = a passport granting access to SEN services).  Even the psychologist who diagnosed my niece was very quick to say she did not need one, possibly because the extra funds that she would qualify for might deny him a much needed member of staff!



Posted in Autism Spectrum Disorder, Carers

4. Fight the Good Fight

It took 5 weeks and a number of failed lumbar punctures before my sister was diagnosed with multiple sclerosis (MS). She had first been diagnosed with transverse myelitis, a condition resulting from inflammation, one of the symptoms of which was a loss of sensation from the toes slowly creeping up towards her lungs. I refuse to give any of these conditions capital letters, only the acronyms, as they are such disruptive and life-changing conditions. After demanding an experienced doctor perform the next lumbar puncture, things moved forward. A doctor was called in from another hospital who later diagnosed MS. Being in hospital for those 5 weeks allowed me to focus on her children, the youngest of which was 3 years of age, who showed no obvious signs of being on the autistic spectrum at the time. To be honest that would have been too much to cope with had we any inkling. Even though my niece’s behaviour was intense, I put it down to the drastic change in her circumstances. This child who had until then lived miles away and did not know me, was now quite attached to me, as I and her grandmother were the closest adult links to her mother, as well as her older sibling.  I would now play mother to both children for the next 5 weeks.

Getting a correct diagnosis was the beginning of many fights.  Others included getting carers to attend to my sister before 12pm each day.  I put that down as a lost cause, after travelling a few hundred miles to see her during her first week home to find that she slept in the living room chair because she had to get down the stairs on her backside, or that she could not get out of bed at all.  Fighting her estranged husband for a divorce, contact, maintenance payments and dealing with the effects of his serial adultery, were some of the others.  One of the most ridiculous fights related to my sister’s employment, red tape and unsympathetic attitude of those she worked for, who did nothing more than tick boxes as part of the bureaucratic process towards ‘dismissing her as inefficient’.

It was only in 2015, 8 years into being a registered carer that I came across a book by Hugh Marriot ‘The Selfish Pigs Guide to Caring’.  Unfortunately, this book confirmed that I was already doing what was required. I had to fight the good fight in order to crisis manage the situation and no one was going to rescue me.  The writer clearly and honestly expresses some of the feelings I have felt on many an occasion, especially that being a carer for a family member is an emotional rollercoaster.

Posted in Autism Spectrum Disorder, Multiple Sclerosis

3. Looking into the abyss

I was in the middle of a shoot when I received the call.  ‘I can’t feel my feet!’

Slightly agitated at being disturbed at work and needing my sister to not be so dramatic, I asked  ‘What do you mean?

‘I can’t feel my feet’ she said.  ‘They are numb’.

Luckily the cameraman was lighting at this present time, so I was just ‘standing by’ as they call it, which often looks to the layperson as though the crew are doing nothing when they are really on high alert, prepping for the shot and ready to function at a moments notice with all hands on deck.  This brief lapse allowed me to remove myself mentally from the film set and  absorb what had just been said, directing my thoughts accordingly.

‘You need to get to the GP immediately’  I declared. ‘It sounds neurological’.

Now let me explain.  I was now only working on films during the summer months as I had just qualified as a Medical Herbalist.  Hence why I had an inkling that a lack of sensation in the feet might be a neurological problem.  As a female on camera I was not too keen on the future in that department anymore, physically and mentally.  I no longer had the endurance to cope with any negativity I might encounter, as I honed my craft on various productions operating and lighting, en route to working as a female camerawoman.  I had come into this field hoping to become a camera operator, but my sympathetic nervous system had endured too much getting to where I was now.  The competition, the emotional and financial insecurities, dressing appropriately in order to retain my femininity while not trying to be one of the boys and attempting to be taken seriously, had hardened me.  In the early days I would sometimes be brought to tears by the occasional nasty comment as though it was some sort of test to see if I would stay the course, but that had long died off.  I couldn’t cry now if I wanted to.  My body had forgotten how.  I probably could have done a better job acting it out than turning on the taps for real.  A number of my male counterparts had eventually moved sideways from film & tv drama into documentaries, corporates & idents, in order to secure employment as cameramen.  The ‘monied work’ – the Bond films, commercials, was a closed shop.  The males I knew had long acknowledged that the good looking males got that work ℅ the female production assistants/producers who worked for the production companies that made them, booking the guys they fancied; so there were few opportunities for a female to break through.

My sister called back.  She had secured a GP appointment for the next day.  I would have to find a replacement so that I could take the day off and accompany her.

Posted in Multiple Sclerosis