12. The battle to communicate properly and be heard by the’Professionals’

My niece had a visit from a ‘professional’ yesterday, one of two teams involved in her care. To date time has been spent talking to the adults in her life, rather than putting things into place for her.  I am normally present at such meetings, however doing temporary work has meant longer hours this week in order to make up for lost pay next week especially as the working week will be absorbed by two bank holidays. The ‘professional’ had received misinformation from the person who sent her, leaving my niece with pent up frustration. She has not yet been taught how to manage frustration or to act positively in light of that frustration and in this case, correct the ‘professional’.

The result was that heat was sent in my direction in the form of a text which began ‘Why did you tell…….?’ Although my sister was present throughout, my niece decided that the incorrect questions she was asked originated from me, the dominant force. The ‘professional’ had tried to investigate why she did not enjoy playing sport, when in fact she did not enjoy swimming. The dislike recently came to the fore when she tried to pummel her ill mother into keeping her off school because of a swimming gala. This is where my role as a Carer as well as Aunt comes into play.  Leaving home earlier than planned I had to talk my niece into attending school. The deal was that I would speak to the Sports teacher about her sensory overload.  In fact there was no need for a big build-up to an explanation as he was fine with it.

When I later chatted to my niece, her reason for disliking swimming was not sensory, nor was it the thought of wearing a swimsuit in front of the whole school and parents, she just disliked swimming. I am aware that she has difficulty identifying her feelings. Not being the strongest swimmer might have meant that she could not take being beaten or she suffers from sensory overload – a trait on the list of spectrum disorders.  Who knows! I hope the key to deciphering negative experiences for my niece is creating opportunities where she can explore what is going on for her,  even if she uses her cognitive skills to do so.

Posted in Aspergers, Aspies, Autism, Autism Spectrum Disorder, Carers, high functioning autism, Sensory issues | Tagged ,

11. Can you spell ‘Investigation?’

While food shopping recently, I came across a two year old girl who was about to turn three, talking to her mother.  She caught my attention because just like my niece when she was that age, this little girl was using words bigger than she was.  In my niece’s case she would challenge adults to spell them.

I am presently working my way through Tony Attwood’s book ‘The Complete Guide to Asperger’s syndrome’.  To date I have read small booklets on autism with tiny references to high functioning autism or Asperger’s. However, I felt compelled to purchase one of his books in the hope that it might give me a greater insight into my niece’s condition. Interestingly I even saw myself on some of the pages. As Attwood points out, one of the traits of Asperger’s in a child under five is the use of elaborate words. For any parent/carer in charge of such a child, the obvious belief is that they have produced a bright child or a genius.  They might have, but how are they to know that such behaviour might not just be out of the ordinary, but high functioning autism?

Posted in Aspergers, Aspies, Autism Spectrum Disorder, Carers, high functioning autism | Tagged , , ,

10. Protecting your child from predators

How do you protect your child, boy or girl, from predators?  At the time of writing this, British footballers have started to reveal the sexual abuse they suffered from the age of 11 at the hands of their football coaches. These I gather are neurotypicals (those not on the ASD spectrum) who have been exposed to abuse. It made me think, what are the risks for those on the autistic spectrum?

It is often a worry having a pre-teen girl on the autistic spectrum, who is far from girly and feels more comfortable hanging around boys.  Do people on the autistic spectrum lack boundaries?  Well they are no different to the rest of us.  Some of us have strong boundaries and react badly to our personal space being invaded, others do not or if aware, freeze not knowing how to react.  While my gorgeous niece is not keen on being hugged unless she initiates it, she also does not know how to give someone space if she likes them and wants to be around them continuously. As a younger child this seemed very typical of her years, as young children rarely want to stop when they like something or someone. However, a couple of weeks ago while out shopping paying for items at the till, I turned around to see a man in his forties standing less than a hair’s breadth behind her.  The obsession on that day to wear a hoody made her look like a pre-teen boy from behind. Nevertheless, whether boy or girl this predator physically charged towards me when I accosted him, accusing him of being a pervert.  All the while my niece seemed none the wiser of this predator’s unacceptable invasion into her personal space.

Interestingly, my niece’s reaction to me alerting security was to raise her eyes to the ceiling as though I was making a fuss about nothing. This led me to realise that I did not want to add to her discomfort or embarrassment during such a time. When the security guard asked if the pervert had touched my niece, I did not feel able to verbally reveal her neural status to him and cause her more embarrassment.  Besides she was not aware that he was standing so close to her.

Once home I looked on the website of the National Autistic Society and ordered some Autism Alert Cards, which are designed for the person with the condition to show others when in difficulty.  As my niece is in denial about having Asperger’s, I ordered some for the more responsible adults in our family to carry when with her. This can be shown to others to explain her situation, while in her presence, thereby limiting any anxiety caused to her.

Having raised this recent experience with the professionals involved in her care, they acknowledge work needs to be done with her on what constitutes inappropriate behaviour.  I am presently exploring ways to talk to her about the same, so that she understands the  concept of what personal space means and when it is being invaded.

Posted in Aspergers, Aspies, Autism Spectrum Disorder, Carers

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