Words From Home

I was very tired after our day on the North Norfolk Railway so we decided to have a quieter day on Thursday. It was another warm sunny day and we were content to stay around the bungalow to enjoy the beach and the garden. We took a gentle drive into Mundesley and had lunch at the Beach Cafe. The beach was packed and as we sat by the cafe window looking out at the beach I saw little children paddling, older children in wetsuits playing on body boards, children with buckets and spades digging holes and building sandcastles and parents and grandparents keeping a close eye on the little ones. It brought back so many memories of holidays with our children as they were growing up. My son loved to dig holes and then he would run backwards and forwards filling buckets with sea water and pouring it into the hole. He would get very angry with the sand for stealing his water and it would take considerable effort to distract him from his futile task, but the promise of an ice cream would usually do the trick. 

My son is now nearly eighteen and he has chosen to stay at home under the watchful supervision of his older sisters. Judging by his texts it sounds as if they have had a rather eventful week

"It was only a matter of time until it went to their heads"  Monday

"Your daughters have a serious Napoleon complex!"  Tuesday

"Please educate L that what she says to me, if said to anyone else, will very much shorten her life expectancy" Wednesday

As the week went on there were several more messages of the same type, including one suggesting that my older daughter's boyfriend deserves a medal! I couldn't help smiling at some of his comments, I guess most eighteen year olds are impossible at times and adding Asperger Syndrome to the mix certainly doesn't make things any easier!

"Why didn't you tell me? ......."

Having Robbie in my life means that I am used to strange questions and not to be out done, my son has spent his whole life bombarding me with questions on every imaginable subject. Believe me there is never an easy answer where my son's questions are concerned. Here are two diary entries, my son was 9 or 10 at the time.

...........He was almost back to normal, asking his usual stream of questions.  Among several other things he wanted to know how exactly it is possible to kill 2 birds with one stone! 

...........My son questioned me in detail about the ageing effect of space travel, it made my brain hurt.  He said that if there were identical twins and one went into space while the other stayed behind, one would end up older than the other.  Having thought about it, he must be right, I saw William Shatner on TV not so long ago and all that space travel has clearly taken its toll on him!

Usually my older daughter is more likely to tell me the answers than to ask questions but yesterday she was even more 'random' than Robbie. When I came back from work she came into the lounge and said "Mum, why didn't you tell me about Peter Cook and Dudley Moore?" I was lost for words, there are so many things that I have tried to pass on to my children, but I am fairly sure that Peter Cook and Dudley Moore were not on the list. She went on to tell me that she didn't know that they used to be a double act, but having come across clips of them on YouTube she had discovered that they are very funny. I don't think forgetting to tell her about Pete and Dud makes me a failure as a parent, but it has left me wondering what else I should tell her about.

The kindest word in all the world is the unkind word, unsaid.

Have you ever found yourself in a situation where you understand every individual word but the sentence still doesn't make sense? Those with experience of building self assembly furniture would probably answer with a resounding yes. Have you come close to tears of frustration when trying to communicate with someone apparently speaks the same language as you? If you have ever had to deal with an overseas call centre the answer is probably yes! For most of us those things may be irritating or even upsetting, but they only happen occasionally and then they are quickly forgotten. 

For people with Asperger Syndrome or Autism communication difficulties are a constant challenge. To some extent it is a hidden disability; people with Asperger Syndrome can often be pedantic and obsessive about certain subjects which other people find exhausting or even irritating. They find social interactions difficult because they are not good at reading or predicting situations and they often struggle to interpret emotions or the subtle subtext of what is being said. However these difficulties can be masked to some extent by a wide vocabulary and good linguistic skills, so other people may not realise that the person has not understood. Instead of being understanding, other people can become hostile and angry. 

On Saturday I met a 45 year old man who has been the victim of online bullying, because he didn't fit in. He hadn't done anything wrong, he was just a bit obsessive about his favourite subjects which other people found annoying. I felt terribly sad when this chap told me that he knows a lot of people, but he has no friends. We chatted for well over an hour and I realised that he is a very knowledgeable, interesting man who means no harm to anyone. I just want to make a plea from the heart, please don't be too quick to judge people who are a bit different because they may have a hidden disability. It takes all sorts to make a world, and just a little bit of understanding and tolerance makes the world of difference. 

A White Elephant

The son who must not be named had to go to the dentist, so I picked him up from school and drove him to the surgery. Our route took us past a large traffic island and the edge of Abington Park, the traffic island was planted with daffodils and so was a wide slope at the edge of the park. I pointed out that the daffodils were in full bloom and I said that when I see daffodils the words of a poem pop into my head. My son said "yes I know" and he promptly quoted the whole first verse of the Robert Herrick poem To Daffodils. "Fair daffodils, we weep to see you haste away so soon, As yet the early-rising sun has not attained his noon. ...................." He went on to say that he doesn't like daffodils because they flower so briefly and then seem to stand there looking dead for months. I know exactly what he means, daffodils always make me feel sad too and I agree with his sentiments about the display of daffodils in the park. It has a big sign saying "Field of Hope" but he says that it inspires the opposite of hope because the daffodils look dead for most of the year, with just a couple of weeks of colour in early spring. I still find it fascinating when he allows me little glimpses of his 'aspie' thought process, I may only give a passing thought to contradictions such as the field of hope, but such things really trouble him because they don't make sense.


On our way back we somehow got on to the naming of pubs. I told him that I disapproved of the modern trend for changing pub names because the old names often had historical significance. He asked what I meant and I said that The White Elephant was a good example of a pub whose name reflected it's history. He asked if a white elephant had once died there; I glanced across at him because I thought he may be teasing me but he was completely serious. He has always struggled with idioms because he trys to take them literally, but he learnt the meaning of most of the commonly used idioms long ago, so it was a bit of a surprise when I realised that he did not know what a white elephant was. I explained that we use the term white elephant to describe something that has value but is of no practical use and a bit of a burden to the owner. 

The pub in question was built as a rather grand looking hotel in the days when Northampton had a racecourse. I expect they thought that they would build a good business providing accommodation and refreshments for racegoers. However soon after it was built the racing stopped; there were public access rights across the course and a series of accidents between 1901 and 1904 led to the banning of all races. The last race took place on 31st March 1904 and the racecourse became a park (still known as the Racecourse). So Kingsley Park Hotel was left on the extreme edge of town (at that time) without an obvious clientèle. It became known locally as the 'White Elephant' and in due course the name was changed to The White Elephant.

It is odd, a simple trip from the dentist led to discussions about poetry, linguistics and local history. There are many times when that boy has me tearing my hair out, but I treasure these special times when we have interesting conversations. He couldn't resist pushing his luck, as he got out of the car to go back to school he said that I knew so much about 'the olden days' that it sounded as if I remembered them personally - cheeky monkey!

What Did You Say?

Having a family member with Asperger Syndrome has taught me many things. One of the most important is to be very clear when giving information or instructions because there is a good chance that the aspie person will take my words literally or focus on just one part of what I said and miss the deeper meaning. Of course I sometimes get it wrong and it leads to some surprising misunderstandings like the time not so long ago when my son was asked to put the bin bag outside. I intended him to take the bin bag from the kitchen and put it in the wheelie bin outside but I didn't say that, so when I went out to the car I found the bin bag sitting in splendid isolation in the front garden. Luckily I found it before the local cats got their claws into it.


Last night I was chatting to Robbie about one of our children and I said "he seems to have taken umbrage because I told him off ......" The look on Robbie's face told me that he was no longer listening to me. After a few moments he repeated the word 'umbrage' several times as if he was exploring the shape and sound of the word. Then he looked up with a satisfied expression and asked if the word had something to do with a humpback bridge. I told him that it was just a phrase that meant the person was displeased because they felt slighted in some way. I had to look up the exact meaning of umbrage in order to tell him that the word had a Latin root and it meant shade, shadow or darkness. The word only survives in English now as the phrase to 'take umbrage'. Robbie told me to stop, he said that I had given him far too much information (now he knows what I have to put up with!) and anyway he preferred his own definition of a humpbacked bridge. No wonder it is so hard to understand him sometimes! 

On Target

In a way I had been dreading Thursday morning, what if the unthinkable happened, what would I do then? The problem was that I was not in control, I had done my best or at least I thought I had, but this wasn't about me. All I could do was get on with my morning and wait for the phone to ring. 


At last the phone took pity on me and rang. A rather cheerful voice at the other end informed me that he had passed. He had some very pleasing results and most important of all he had got more than enough to get into the sixth form of his choice. After a huge sigh of relief, I was the proud mum full of congratulations and cross with myself for my moments of doubt.


So why was I so anxious, I don't recall being this nervous when his sisters got their results. He is every bit as bright and able as his sisters, but perhaps not as diligent. The girls were able to continue to the sixth form at the same school, but 'the son who must remain nameless' wanted to change schools. We all agreed that it would be the best option for him, and he had been offered a place at the better school (the one his sisters attended) but he needed at least 8 good GCSE grades in order to take up his place. Perhaps it isn't so surprising that I was anxious, so much depended on his results.


Today I took 'the nameless one' to the new school for a meeting to sort out his timetable and do all the necessary  paperwork before starting school a week on Tuesday. He will be one of only a handful of boys at an all girls school, but I am certain it is the right place for him. It is not always easy for him to cope with ordinary things because of his Asperger Syndrome, but the next couple of years will be very important not just in achieving good A level results but in helping him to become independent enough to thrive at university. 

Being Anal

I was reading a thread on a forum the other day about the things that people are anal about, it made me laugh out loud because the very first post could have been describing Robbie.


"....he emerges from the bathroom holding the toothpaste asking who has failed to squeeze from the bottom of the tube!"


As I read on I realised that so many of the posts could have been describing Robbie. Someone wrote about their partner driving them mad by constant checking and commenting on railway and bus timetables. Surely there can't be anyone else as bad as Robbie for doing that - or do all train planners take their quail maps to bed with them?


Another common theme was having to have tea or coffee made in exactly the right way. Robbie is impossible about the way his coffee has to be made and he criticises me every time I make coffee for him, so I find it easier to let him make it himself.


Robbie even has strong opinions about the loo roll! According to him it unrolls more efficiently if the end is on top rather than underneath. I don't think I even notice which way round it is, why would anyone obsess about anything so trivial?


In the interest of fairness I should perhaps admit to the one thing mentioned that I am obsessive about - black ink! Blue ink should never ever be used, black
looks so much nicer. Robbie is into pens in a big way, especially Parker pens, he could talk forever about all the different designs - and if anyone borrows his pens it is a hanging offence!


When I first met Robbie I thought it was odd that he counted the stairs every time he went up or down, but I soon realised that was mild, Robbie counts everything. This evening I caught him counting the increasing revs on the washing machine spin cycle, he could tell the speed just by listening to it and when it reached the maximum speed of 1400 he got so excited - seriously weird and more than a little autistic!

A Testing Time

We have a house full of teenagers so I spend a lot of my time every day driving around in the car, all that is missing is a chauffeur's cap! Often I listen to Radio 4 while I'm driving, but I also enjoy listening to talking books. At the moment I am listening to The Curious Incident of The Dog in the Night Time, it is about a 15 year old boy with Asperger Syndrome. It is an excellent book, but perhaps for me it provokes a mixture of emotions because Sam has Asperger Syndrome. I don't write about it often because Sam doesn't like to be talked about and he certainly doesn't like being labelled. Living with Aspergers is not easy for the person who has it or for those close to them, but as with most things in life you get used to it and you make adjustments.

As we were driving home on Tuesday evening Robbie interrupted our conversation to comment on the open door of a telephone box. I am used to the rapid twists and turns in Robbie's conversation, but that was a bit random even for him. He talked at some length about the phone box, reasoning that the door closure must be broken and speculating on what would have caused it to break. I told him that I hadn't even noticed the phone box and that his obsessive interest in trivia was yet more evidence of his Aspie traits. He was adamant that he was totally normal and that it was the rest of the world that was out of step, come to think of it, that is exactly what Sam says! Anyway our conversation concluded with me challenging Robbie to take an Aspie test. The online test is not a diagnosis, but it does give a good indication of the likelihood of having Aspergers.

Robbie promised that he would answer all the questions truthfully and to prove his honesty he provided a running commentary as he took the test.
It seemed as if some of the questions were written just for him, especially the one about getting upset if someone sits in his seat. He is dreadful about that at home, but he even gets upset if someone sits in his favourite seat on the train! The test seemed to go on for ever, but eventually he completed the test and he was able to print out the detailed results, I will not bore you with the details but the conclusion was that he was very likely to be Aspie. Robbie seemed surprised by the result, but I doubt it would be much of a revelation to anyone who knows him well. I have always said that one of the reasons that I love Robbie is that he reminds me of Sam, now I know why. They would be deeply indignant about being compared to each other, sure there are superficial differences, but deep down they are very alike.

Fighting Back!

According to Sam, he is perfectly normal and it is the rest of us who are a bit weird (his choice of words, not mine), maybe he is right. Living with a person who has Asperger Syndrome certainly tests the limits of my sanity at times; it can be frustrating, exhausting and isolating. I love Sam dearly and I am so used to his idiosyncrasies that I couldn’t really imagine him being just ordinary. He rivals Robbie when it comes to random facts; on Thursday he informed me that apart from humans, dolphins are the only other species that indulge in sex for pleasure. I will have to have a rethink, I’d always assumed that rabbits had all the fun! Sam is the only person I know who can talk more than Robbie, his specialist subject is films and comic books, but just like Robbie he will talk in detail about absolutely anything!

Shopping with Sam has always been ‘an experience’. Can you imagine a child with a compulsion for sorting being let loose in a supermarket, we could never get past the cereal section because he wanted to sort and straighten all the boxes. Shopping with Sam was a very time consuming activity! When he was three he went to the fish counter at Safeway (now Morrisons) on a behind the scenes visit with his nursery group and he has been fascinated by fish ever since. For years afterwards he would go up and look at the fish and `interview' the staff about what the various fish were and where they came from. I would attempt to ‘disown’ him and disappear to the next section but eventually I would have to drag him away. I really don't know what Sam found so fascinating about fish, perhaps it is his Cornish background showing through!

For years it was Sam’s ambition to be a trolley pusher at Safeway, but one day as we left the shop he spotted a sign displaying job vacancies, he said "Mum, if I can't be a spy I think I would like to work on the fish counter". Thankfully he has slightly different ambitions these days.

Shopping is still a challenge and it rarely passes without incident. Something about Tesco transforms him from a tolerable teen into an angry troll, come to think of it; the supermarket has much the same effect on Robbie! On Friday Sam and I had to pop into Morrisons for some bread and a couple of other items. Sam was being really helpful (there’s a first time for everything) and when we got to the bread section they had packed the bread on to the shelves so tightly that it was very hard to pick up a loaf without squashing it. I held the basket and Sam carefully eased the loaves off the shelf and checked the sell by dates. We were just selecting our second loaf when an old woman who was using her trolley as an offensive weapon came up behind us and shouted 'excuse me'. I looked behind me and checked that we were not blocking her way and Sam stepped a little closer to me. In seconds she shouted 'excuse me' again and attempted to shove Sam away from the bread with her trolley. I was incensed and told her she was a very bad mannered old woman. I pointed out that Sam was helping me, she had plenty of room to go past us and if she wanted to buy bread she should wait her turn. She was very offensive and threatening and as I walked away I told her to learn some manners. I was so angry that someone would treat Sam like that, especially when he was being so well behaved.

Sam was shocked into silence for a while afterwards; I think he was really shocked by the woman’s behaviour. As we drove home he told me I was ‘awesome’ and he said he didn’t know I could be so cross. Maybe I wouldn’t have stood up for myself as much, I am not a confrontational sort of person, but I couldn’t stand by and let Sam be treated like that!