Autism is like an iceberg some signs are visible but more are hidden below the surface

A telephone call on Friday afternoon left me in tears, but that is the end of the story, I need to start from the beginning. At 6am on Friday morning Robbie had left for work and I was standing in the kitchen ironing shirts and feeling very apprehensive. Two members of my family had important meetings that day and there was not a thing I could do to help either of them except to iron shirts for my son in the hope that looking neat and tidy would help him to make a good impression.

I have spent my life worrying about him, trying to keep him safe and generally trying to do my best for him, he may be 17 and almost grown up but I still worry and I still do my best to support him. Life is often challenging for people with Asperger's Syndrome or Autism but it can also be mentally exhausting for those who love them. I don't usually write about my son's Asperger's Syndrome because he tries so hard to be just like everyone else. He doesn't want to be labelled, he just wants to be accepted as himself, but in order to achieve that he has had to work hard to understand other people and to understand himself. It has been an up hill struggle, but I am so proud of him because he never gives up, even when things go wrong he keeps on trying.


He had applied for an important role within his school and on Friday he had to attend interviews as pat of the the selection process. We all feel anxious about interviews, but for my son facing people he didn't know, managing to maintain eye contact, to answer questions and (most important of all) to know when to stop talking was a really big challenge for him. I felt apprehensive all morning, and it was a relief to get a text from him saying that the interviews had gone well. He told me that he would know the outcome by the end of the school day, so he still had an anxious wait. I wished him luck and reminded him that whatever the outcome, it is all good experience.


I can't believe the change in him since he moved to that school. They have helped him to believe in himself, to believe that he can do things and to dare to aim high. His old school had high academic standards and he did well there, but I never felt that they cared about him as an individual. His new school had a different outlook and he has thrived.


I watched the clock, 3.15pm came and went and I convinced myself that it must be bad news. Then at almost 4pm my son rang to say that he had been selected as a vice president of his school for the next academic year (boys are not allowed to stand for president because it is a girls school). I was just on my way out to the supermarket when I took the call, I was so please for him and so proud of him, that I sat in the car with tears running down my cheeks. It has done him the world of good going to that school.

Normal Service is Resumed

A series of problems have conspired to keep me from writing the blog for almost two weeks. The first was lack of internet access courtesy of AOL, but more of that later. We had a very stressful few days before we finally got back online, but then I was ill. I don't know exactly what was wrong, no doubt the doctor would say it was a 'virus' but whatever it was I felt absolutely dreadful and I spent several days in bed. I am feeling better but I hope nobody else gets it because it really wiped me out.

On a Thursday morning two weeks ago our internet connection failed at about 8am. It seemed that no internet signal was reaching the router but our telephone was working perfectly, so I wondered if there was a problem with our cables. I popped out to buy new cables but when I tried them there was still no signal, I even tried a different router but still there was nothing. I got the line checked and there was nothing wrong with the line, so there was no alternative we had to ring AOL. Robbie rang them first, but he had to give up on the call after half an hour because the man would not deviate from his script and was no help whatsoever. I hate having to talk to call centres in foreign countries at the best of times, but AOL have taken poor service to an all time low. 


Anyway after over two hours of being passed from one unhelpful person to the next totally useless person I was reduced to tears of frustration. Not one of them spoke good enough English to understand me and I had extreme difficulty understanding them. To make matters worse they kept putting me on hold and playing dreadful music down the phone. My blood pressure must have been off the scale! They couldn't solve my problem, they didn't even seem to care about it. At one point they told Robbie that they could not check our internet signal because their equipment was broken and they had no idea when it would be working again! I told them that I had suffered enough and I wanted to leave AOL - NOW!! They treated me with total contempt and disconnected my call, but after calling back and queueing for an eternity they finally gave us the mac code needed to transfer to another provider.


We now have a better and faster internet service at less than half the price charged by AOL and as an added bonus  their call centre staff speak and understand English! So normal service has been resumed and I will be able to bring the blog up to date.

Barking Mad

I never want to get up when the alarm goes off but this morning Robbie and I were both more tired than usual because he was very late getting back from work yesterday and we didn't get to bed until well past 1am. I remember hitting the snooze button once or twice and I remember struggling to wake Robbie and get him moving, but after that it is a bit hazy. I must have closed my eyes again because the next time I looked there was cup of tea on my bedside cabinet and the clock had raced ahead. Suddenly I was wide awake and rushing to be ready on time.

I noticed that it was suspiciously quiet, by that time Robbie should have been in the shower, but I couldn't hear any noise at all from the bathroom. On my way to the bathroom I paused at the top of the stairs, Robbie was downstairs arguing with someone.

I was rather alarmed, who could he possibly be arguing with at this time in the morning? I couldn't enjoy the luxury of having the bathroom to myself because I was worried about what was going on downstairs. I reasoned that he must be talking to someone on the phone, but judging by the string of expletives whoever it was must have wound him up big style. Robbie is never at his best first thing in the morning so I was worried that he may come to regret his outburst later in the day.

As soon as I was washed and dressed I went dashing downstairs to find out what was going on. Robbie was standing in the kitchen wearing only a t-shirt and he appeared to be arguing with the back door. I am used to weird but that sight stopped me in my tracks, I thought we may need professional help!! Finally everything became clear, Robbie was having a heated argument with Meg the dog who had apparently asked to go out into the garden and refused to come back in. I can understand Robbie's frustration but Meg is extremely deaf and more than a little confused so yelling at the back door was not exactly productive. I guess I should be grateful at least he didn't scare the neighbours by chasing her round the garden wearing next to nothing!

In a Queue

Robbie seems surprisingly chilled about losing his wallet, all he could talk about last night was train stuff. He seemed very impressed that a charter train had gone through Northampton - I was less impressed! I had spent what seemed like hours on the telephone in a queue, trying to sort out the mess caused by lost credit cards. He is a second card holder on my credit card, so he was only able to put a stop on that account, I had to ring them to go through a whole set of questions with them. Then I had to try to rescue my Boots card points, I had let him take the card to get some aftershave, on Sunday, I had a lot of money on it so I was very upset about it being lost. I hate having to queue on the telephone, they always want to inflict dreadful music on me. I detest classical music, any sort of music played via the phone sounds horrible, it is irritating and by the time I get to speak to a live human being I feel feel murderous!

So Frustrated!

I am so frustrated!! On Friday my asthma started to get really bad, I couldn't breathe I just kept coughing and coughing until I choked, it was horrible. As the weekend went on it got worse, I can't sleep because of the coughing, and not being able to breathe is scary, it is even a struggle to talk. I don't go to the doctors very often, but after a difficult weekend it was starting to feel out of control and I was worried that it could be bronchitis, so I really needed to get it checked out. I have to take Sam to school so Robbie rang the doctor for me as soon as the appointment line opened at 8am. He was put into the queueing system and when his call was answered there were no appointments left. In the end I had to have an appointment as an emergency and even then it is with the prescribing nurse not with a doctor. It never used to be this difficult to see a doctor, we just had to ring and we got an appointment the same day, then Tony Blair imposed some targets to make the system work better and surprise surprise, it has been a disaster ever since!

So, I am sitting at home waiting to go to the doctors and wondering how to stop the cat from climbing up the Christmas tree!

Simple Tastes

I am a person of fairly simple tastes, no I'm not talking about why I was attracted to Robbie – that is a mystery even to me! What I mean is that I don't want an overly complicated life, I use my mobile phone to make calls and send texts, I don't need it to play music, take photos or access the internet. With my house phone I just want it to make and receive calls, nothing complicated, so when I had to buy a new phone I just bought a simple one with two handsets. Robbie set it up while I was working, it looked fairly nice – until it rang! I couldn't live with that, it played a very tinny version of the William Tell Overture, it was like an angry child demanding attention NOW. I told Robbie that I just wanted it to ring and I honestly didn't believe him, so he ran through the options. The Minute Waltz was equally annoying, there was another tune that sounded like a dalek on speed, yet another sounded like a car alarm and the final couple of options were unspeakable. There was no simple ringing sound so I have to put up with the least annoying of the options for now, but I want a phone with a proper old fashioned ring.

Conspiricy Theory

I am old enough to remember a time when our lives were not ruled by mobile phones and occasionally I feel nostalgic for those days when you could go out and not be troubled by messages or phone calls. During my childhood the house phone was connected to the wall and nobody thought of phones in every room, often it was positioned on a table in the hall and it certainly didn't dominate the house. Now I am driven to distraction by the phone, we have two cordless phones but when the it rings the handset is never on the base and I have to sprint from one room to the next looking for it. It is usually in Emily or Laura's bedroom, but by the time I have found it the ringing has stopped and I am left to wonder who was calling.

I think our bathroom is bugged, as soon as I get in there you can guarantee that the phone will ring. I would understand it if I shut myself in there with a magazine, but I don't stay in there any longer than necessary. I know the caller can't see you but I am never going to be comfortable about chatting on the phone while using the smallest room. I have to rush out in a dishevelled state to find and answer the phone and it is almost always Robbie just ringing to say hello. I don't know how he manages to time it so badly so often. Even more annoying is when I have just got into a relaxing hot bath, the phone rings and my moment of luxury is ruined. It is bad enough to drag myself out of the bath and stand there dripping and freezing to death just to answer the phone, but when it is Robbie ringing to tell me something 'exciting' about a train that he saw on his way to work I find it very hard to be civil to him. We probably couldn't manage without our mobiles for long, but just occasionally I long for the way it used to be! Of course I could ignore the phone, but it could be important. My parents may need help or Sam's school may need to get hold of me, I can't ignore it.

Communication Skills

Robbie and Sam both have a tendency to provide too much information. Sam restricts his enthusiasm to his favourite subjects, but Robbie will talk at length about absolutely anything and I often have to tell him to stop talking because it makes me totally exhausted. Interestingly both Sam and Robbie are less good at communicating essential information that they really need to share. Robbie has been in the dog house countless times for failing to tell me he would be late, and Sam tends to announce at the last minute that he has to have a certain item for school the following day – thank goodness for 24hr Tesco!

Sam walks home from school with his friend Ollie and one day last week they were extremely late and I was very anxious. Sam's phone was turned off – he has an infuriating habit of keeping it turned off unless he needs to use it, he says it preserves the battery! I had no idea where he was or why he was late and I was starting to panic. He finally appeared looking dishevelled and muddy and I thought for a moment he had been in a fight. He explained that he and Ollie had found a lost dog at the edge of the park, they had read the tag on it's collar and rang the number, it was an answering service and they had to get in touch with the owner and then the owner had to come out to fetch the dog. The boys stayed with the dog and played with it until the owner arrived. The lady was very grateful to get the dog back because he had been missing all day. The next day she rang the school to compliment the boys on their thoughtful and helpful behaviour.

I was really proud of Sam for being responsible enough to take care of the dog, I just wish he had remembered to let me know that he had been delayed so that I wasn't worried.

The Blind Leading The Blind

Every time I hear the words Network Rail uttered my blood pressure takes a turn for the worse. When we were on holiday the shameful news of the huge bonuses for top Network Rail managers was announced. They made the staggering claim that they were getting the bonuses because punctuality had improved significantly to over 95%. I was reminded of a quotation in my school maths book 'Statistics are like a lamp post to a drunk man, more a means of support than illumination'. In other words you can use them to support something that will not stand up on it's own!! I rather doubt that commuters in Northampton have enjoyed 95% punctuality, and what about all the weekends when there are engineering possessions, there are no late running trains - because there are no trains at all! I suspect that if punctuality has improved it is in spite of Network Rail rather than because of them, and it probably has more to do with the hard work of the train operators.

This week it was announced that Network rail has awarded a huge 3 year contract to BT to upgrade their communications systems. It doesn't require a crystal ball to foresee disaster! I have had many dealings with BT both as a residential customer and in the course of my work. I think they probably rival Network Rail when it comes to incompetence, delay and poor customer service. In fact last month I was finally able to ditch BT and have my line rental from Sky, they may not be perfect, but at least I am able to speak to a live human being when I need to! As far as the liaison with Network Rail and BT is concerned, I don't hold out much hope. It will be like the blind leading the blind! Network Rail would probably be better off with a few old cans and some lengths of string! After all, if you never listen to anyone else, you don't really need an effective communication system do you?!

Things That Go Bump in the Night! 10.03.08

Robbie seemed to have a good time 'playing trains' on Saturday. He didn't get home until after midnight and I had been very clear that if he wanted to go 'out to play' he would have to go to and from the station by taxi, I tolerate 5.30am starts and late finishes on weekdays but my weekends are precious and I am not keen on loitering at the station at midnight. I headed off to bed at 11.30pm and soon after midnight I heard what sounded like a taxi outside, shortly afterwards I heard what sounded like Robbie coming through the front door and a selection of other lumps and bumps, so I was fairly confident that Robbie was home. I wasn't too surprised that Robbie didn't come up to tell me he was home because he probably thought I was asleep. I continued reading until almost 12.30am when I heard the phone ringing downstairs, Robbie hadn't answered it but I assumed he had fallen asleep (he usually does). I was up, out of bed and galloping down the stairs, after all if someone was ringing at that time of night it must be an emergency and I was worried in case it was Emily. The phone had stopped ringing before I got there but someone was knocking at the door - it was a cold and cross Robbie! Someone had left the key in the door! I don't think it was me, but I can't be certain. Robbie burst in, invented several new words and headed for the kitchen. I wasn't going to hang around for him to bark at, and I went back to bed to continue reading. In due course Robbie appeared with cup of tea and an explanation. I had given him a stern warning not to wake the whole house when he got home, so when he found himself locked out he didn't want to make too much noise. He didn't ring the bell or the phone, he knocked on the door and sent me seven texts, the problem being that I don't take my mobile to bed because it makes those annoying scanning noises, and after years of being on call at night the slightest noise from the phone has me on instant alert. I am still cross with Robbie for not just ringing the house phone or the doorbell, trust him to turn a simple problem into a drama!

Torture! 11.07.09

At last our phone has been repaired! It took seven days, five different repair men, countless phone calls totalling more than 4 hours, endless frustration, raised blood pressure and massive inconvenience just to get the fault dealt with. This turned out to be a very simple fault (according to the BT man). Imagine how difficult it would be to get them to do something difficult! Most frustrating of all, we couldn't get a repair man when we needed one, but this morning when the phone was working perfectly a BT man turned up and refused to believe that the repair had been done!! I think you could sum it up in two words - Total Incompetence

The Wanderer Returns 24.03.07

The wanderer finally returned late on Thursday evening, still clinging to his story that phones don't work in Ireland. At first he alleged he was busy with exhausting but productive meetings, maybe but it wasn't the full story! Mr talkative soon fell into a heffalump trap. He had indeed sampled the local brew and enjoyed 'networking' with colleagues from other areas. Judging by the number of photos and he found ample time for cranking too, it was just phoning home that proved too taxing for him!

He was late home last night too, apparently he went to a leaving 'do' at Crewe, he seems to be catching up on his sleep today, so he has not had much to say about Crewe yet

The 'Dying Fly' 22.03.07

I can't tell you how Robbie is getting on in Ireland as apparently they don't have telephones! Sam has been unwell all week with a very sore throat and a constant headache, he had a day off school on Tuesday and he was very reluctant to go back yesterday, even the snow this morning hasn't provoked any enthusiasm from him. I am sure he is ill, but the problem is that it is impossible to tell how ill. He is an expert at the 'dying fly' routine and we are treated to the same academy award winning performance for 'finger ache' as for something serious. So I have spent this week worried about making the wrong decision and being told that I am a terrible uncaring mum. Why is life never simple?