It sometimes seems that there is a constant stream of meetings, assessments and appointments for one or other of our children.  The latest of these was Luis’s occupational therapy assessment last month.  He has had OT before, through the NHS, and they did identify problems with his motor skills.  We never received many details though and there wasn’t much advice given, so we were very grateful when his school arranged for him to have a comprehensive private OT assessment.

I received the report today and it didn’t make for easy reading.  The tests of Luis’s motor skills (which included sections on manual dexterity, aiming and catching and balance skills) place him in the bottom 0.1st percentile – which means that only one out of a thousand children of Luis’s age would have the same score as him or lower.  Of these skills, balance was the one he struggled with most.

The next part of the assessment involved visual perceptual skills – which means the ability of the eye to take in information and interpret it.  In this section Luis scored very low, with the score that would be expected of an average five year old.  What this means in practical terms is that he has great difficulty transferring what he perceives visually onto paper, and helps to explain some of his problems in the classroom (for example he would find the process of copying work from the board very difficult).

Sensory issues were also looked at, and Luis was found to have problems in many of those areas, which again has implications for how he is able to learn in the classroom.  He becomes distracted by any background noise, as well as being distressed by intense sounds.  He has problems with his vestibular processing (to do with balance) and proprioceptive processing (the sense of your own body and how to use it, for example knowing how much pressure to apply when using a pencil to write).

So having identified the extent of Luis’s problems, what are we able to do about it?  We have known about some of these problems for a while (though they are a bit worse than we realised) so he has already had sessions of physio at his previous school – he took part in a programme of structured exercises that included throwing and catching, jumping etc.  He has also had extensive support with his handwriting over the years, which has improved it to some degree but hasn’t really made it any easier for him (his hypermobility makes writing difficult as his hands bend so much).  Luis has taken part in many different sports and activities over the years, with varying degrees of success (he did an after-school football club for a while, but was asked to leave as he wasn’t able to join in with it at all).  He had swimming lessons for quite a long time and is able to swim unaided, albeit in his own unique style as he finds the coordination required very difficult.  He can now ride a bike, and even though it is very difficult for him and he can only ride a short way in a wobbly fashion, this is an amazing achievement considering the difficulties he has with balance.  He goes out to activities such as trampolining, rock climbing and bouldering on a weekly basis with school, and does a variety of sports in PE, as well as the Crawley Capers football club that we sometimes go to.  From a young age we have always given him plenty of chances for physical activity in places like playgrounds, soft play centres or just playing outside the house and general daily activities (he has strong legs and can walk for miles without getting tired).  The occupational therapist will now be giving Luis weekly OT sessions, and various strategies will be used in class and in his PE lessons.  Hopefully these will make some difference, but the extent of his problems means that there is no easy “fix” for these issues – we will just continue to encourage him and get him to try as many different activities as possible.

A couple of weeks ago in half term we went to Crawley Capers football club which we hadn’t been to for a while.  ITV was there filming a follow-up feature about how the club has used the funding they received just over a year ago.  I think our children were in the background of some of the shots, but we haven’t been able to see it yet as it was shown on Meridian – and in Crawley we receive the London news.  Luis, Beatrice and Ella all enjoyed kicking the ball around and trying to get it in the goal, Luis and Beatrice aren’t capable of taking part in proper games with some of the other children but the option is there for when they feel  more able in the future.  That’s the great thing about this club – there is no pressure to have to do anything they’re not able to and they can just go at their own pace with no expectations of what they “should” be doing.

This week was World Book Day at school.  Luis went as Greg from Diary of a Wimpy Kid. I had trouble thinking up an outfit for Beatrice as she doesn’t like fiction so there were no obvious characters she wanted to dress up as.  So I looked on Google for inspiration and saw someone who had written words all over a t-shirt so their child could go as a dictionary.  This was a perfect solution for Beatrice and she was very happy with the idea!  She has sometimes started to read fiction books but quickly gets bored, and is much happier with something like her medical book or an instruction manual, or some of the factual videos she watches online.  I know some people have the view that children spend too much time on electronic devices now, but for children with inquisitive minds the internet opens up a whole world of knowledge which I think is fantastic – and as long as they are still getting plenty of exercise and doing other activities as well I don’t think there is anything wrong with it.  Luis has been researching mobile phones a lot recently and is fully up to date with the latest technology available, although we’re not letting him have any of the expensive phones he would really like!





Well we have had a lot going on over the last few weeks, but also managed to have some quiet time over the Christmas period.  Autism Support Crawley held a special funday at a local stables, hosted by the lovely Anna Kennedy who is patron of the group.  The children were able to stroke the horses and Beatrice even had a little ride on one, for the first time ever.  I think the mince pies and other edible goodies were also very popular!  Father Christmas was there and Luis went to see him, but Beatrice got very distressed and wouldn’t go anywhere near him.  Despite the odd meltdown it was a lovely afternoon overall and very enjoyable to spend time with other families locally who understand our children’s needs.

The following day Luis went on a fantastic trip with his school, to Kidzania up in London.  This is like a virtual city where children can try out different jobs for the day, earning a special currency that they can then spend in the little department store.  Luis tried out various things, including being a courier, working as a mechanic changing a tyre on a Renault F1 car, and trying out an aircraft simulator where he had to try to land a plane at Heathrow.  He absolutely loved it and I’m sure it was the highlight of his whole year.  I think he looked particularly dashing in his pilot’s uniform!

As part of the autism diagnosis process, Beatrice was observed and assessed at school by a specialist in speech and language therapy and social communication.  They got a good idea of the problems Beatrice is experiencing at school as she had several meltdowns that morning.  Once again it was a report that wasn’t easy reading for us, as it highlighted a range of problems and said that Beatrice has significant difficulties with social communication and interaction.  We knew that was the case, but it’s always slightly upsetting to actually see it down in black and white from a professional’s viewpoint.

This assessment was followed up quite quickly by the official diagnosis appointment at our local hospital, where we saw a paediatrician we hadn’t seen before.  It wasn’t a very long appointment as they had already decided what the diagnosis would be, and this paediatrician said that she could tell Beatrice was autistic within a few minutes of seeing her, quite apart from all the various assessments which had been done.  They’re phasing out the diagnosis of Asperger’s and she was given the more general diagnosis of ASD (autism spectrum disorder) instead.  The most important thing about this appointment though was that the paediatrician had noticed, and could tell from the previous observations, that Beatrice is very demand avoidant.  This was evident as Beatrice got quite distressed whenever she attempted to ask her a question.  So the paediatrician advised me to do some research into PDA (pathological demand avoidance) as she thought that PDA strategies would be helpful with Beatrice – although she hasn’t given a formal diagnosis of PDA (which can be quite difficult to get as not all professionals even mention it, let alone diagnose it).

PDA is part of the autism spectrum, the best way to describe it is a particular form of extreme anxiety that is caused by the demands of others.  Even just a normal, everyday request creates such a response of panic and anxiety that the person with PDA can’t cope and can react by going into meltdown.  I don’t actually know that much about PDA myself and will be doing some reading, I have friends with PDA children who could describe it much better than me but that gives a general idea of what it means.  It is not the same as the child being deliberately defiant, awkward, or trying to get out of doing something because they are “lazy”.  It is an unconscious, automatic reaction, the same way that a threatening event (e.g. if somebody is about to attack you) would cause panic in other people – but in the person with PDA this reaction is to certain aspects of everyday social interaction that most of us cope with just fine.  An example of how this applies to Beatrice happened a few days ago, when Beatrice was watching a video on her tablet.  I asked her how much longer the video was going to be – this was an easy thing for her to tell me as she can see on the screen how long is left.  She became very distressed and said “I don’t know if I can tell you, I’m not sure” – my question seemed to create some sort of panic in her and it took a while for her to calm down as she was so upset.  We have had lots of problems like this, and so I think looking into PDA strategies will be helpful, as it could often be a simple case of rephrasing how we are talking to her.

Another example of this was at Beatrice’s last swimming lesson.  These are always a bit difficult as the water seems to create sensory issues and Beatrice normally finds the whole experience quite overwhelming (even though she can actually swim well now).  It took half the lesson time to even get her in the water – when the teacher arrived Beatrice was curled up in a ball on the floor and wouldn’t even look at her.  Once she was eventually in she did a little bit of swimming, then the teacher told her to turn her head to one side when she was practising one of the strokes.  That was it – Beatrice became so distressed that we couldn’t do any more with her that lesson as she was shouting and splashing around in the water, we couldn’t get through to her at all.  I think these problems are compounded by the fact that Beatrice can’t cope with doing anything wrong – if she is corrected, even in a helpful, gentle manner, she becomes very distressed and won’t carry on with what she is doing.  I will need to work out some strategies to help, and suggest these to the school as well, who are more than happy to try anything that might be useful.

Ella, Luis and Beatrice are all Minecraft fans now – Luis has only recently become interested but now he’s really into it as well.  It’s lovely to see him and Beatrice discussing what they are going to do on there and is something they can talk about together – they seem keen to build metro stations at the moment!  They have other shared interests as well, including watching videos of lifts, and they talk about the different types of lifts they have seen around Crawley.

Luis is quite an expert on the local taxis now, each taxi has a particular number and he can tell us which part of Crawley a lot of the drivers live in, and even what model of taxi they have!  I think some of this information he must get through talking to his taxi driver on the way to and from school, but I’m not sure how he gets the rest of the details – though I think he notes any taxis that he sees parked at the drivers’ homes when we’re out and about.  As always, I have no doubts about his ability to remember information on something he’s interested in!

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I haven’t posted for a few months, a lot has happened in that time and as always we have had a mixture of fantastic achievements along with some more difficult times.  As you can see from the photo, we’re very proud of the fact that Luis finally managed to ride a bike!  This is something that we have been trying to help him with for several years now and he has always found it difficult for a variety of reasons – his lack of coordination being the main one.  His school put a lot of effort into helping him learn, they actually took the boys in his class to Halfords and bought each boy a bike to use in their weekly outdoor education sessions.  It sounds like they practised for hours until Luis finally got the hang of it.  We go to the Wheels for Wellbeing special cycling sessions on Saturdays and so Luis was able to show us his newfound skills on a normal two-wheeled bike (he’s used special trikes until recently).  The first time we saw him actually riding unaided was a big moment for us.  He is still quite wobbly and will need a lot of practice to ride confidently, but to get this far after so many years is wonderful.

We had a busy day of appointments at Luis’s school recently which was quite productive.  First we had his long awaited ADHD assessment, which we have been waiting for since our initial appointment in January, when we (and the school) filled in some quite extensive questionnaires.  After two hours of questions and observations the doctor said that Luis does have the hyperactive/impulsive type of ADHD (there is also the inattentive type, which doesn’t apply to him, and some people can have both types combined).  This didn’t come as any surprise to us, we first noticed that Luis had more energy than a typical child when he was a baby, as he gave up naps when he was just a few months old – he just didn’t seem to get tired during the day and was too busy wanting to look at everything going on around him!  Many people with ADHD take medication to help them stay calm and focus, and it’s been agreed that in Luis’s case this isn’t necessary at the moment as he has such a high level of support at school (although the doctor said that if he’d been in mainstream he would have needed medication) – this will be reviewed on a regular basis and may change as he gets older.

After the ADHD assessment we had Luis’s statement annual review.  This was a very positive experience compared to last year, when he wasn’t coping at all in mainstream and it was decided that he needed to move schools as soon as possible.  This time we were told how well he is doing, how he is bright and they think he will do very well academically.  Luis was in the room for part of the review and we were talking about his interest in aviation.  His teacher told him that she used to work on DC10’s, to which Luis replied that the last DC10 had been retired by Biman Bangladesh Airlines – he never fails to astound us with his knowledge!

After a few months of other interests, Luis has returned to his aviation interest, which is quite handy as we live so close to Gatwick Airport.  He’s also developed an interest in Formula 1, which we’ve always been surprised he wasn’t interested in before considering how much he loves cars.  He still likes lifts as well, is learning about the different types, and watches videos of them on YouTube – he always wants to take the lift when we’re in a building that’s got one, even though I try to explain that we should leave them for people who need them more than us!

I’ve talked before about how Beatrice is also being assessed for autism, and we’re still awaiting the official diagnosis which she will get at some point after being seen by the social communication/speech and language people next week.  She was very excited to go into year 2, but unfortunately she hasn’t been coping very well and this year seems to be a turning point for her.  They put some things into place right from the start, for example they provided her with her own little table where she can do her work undistracted by the other children.  It soon became apparent that Beatrice just isn’t coping as well with the school environment any more.  She started running out of class on a regular basis, sometimes running outside the school onto the equipment in the Key Stage 2 playground, where it would take a long time to coax her back inside.  She was refusing to do her work and generally getting in a dreadful state most days.  Assemblies are now a problem as well and she doesn’t always go to them any more.  Thankfully they’ve quickly come up with a couple of ways to help which have been very successful so far.  She has a blackout tent in the library which she can go to when she is distressed, this has stopped her running outside.  They have also given her one-to-one support which has made a big difference, as she now has somebody to give her reassurance and make sure she understands what she is meant to be doing (one of the things that upsets her is not understanding instructions, and also making any sort of mistake).  Going forward we are going to have to see how much support she needs, and whether she will need an EHCP (the new version of a statement).  As I write this she is particularly unsettled at school again, I suspect because of all the Christmas preparations and change of routine at this time of year.

We also had issues at Beatrice’s swimming lessons.  She is a good swimmer and loves the water, but wasn’t coping with the group lessons, and after a series of meltdowns we decided to arrange for her to have private one-to-one lessons instead.  These are going quite well, but she can become quite unsettled during the lesson and tries to get away from the teacher, throws the floats around etc – the same things that Luis did in his lessons which led to us eventually stopping them for him.  I think it must be some sort of sensory issue with both of them, they like the water but it seems to have such an overwhelming effect on them that they just can’t stay calm.

Beatrice is similar to Luis in her accumulation of knowledge, and it often surprises me how much she knows about things.  We were walking to school recently and for some reason the subject of mountains came into the conversation.  I told Beatrice that the tallest mountain in the world is Everest – I didn’t think she would know this as she hasn’t really learnt about mountains.  Her reply – “The death zone on Everest, where there isn’t enough oxygen, is above 8,000 metres”.  Ok, so she does know a little bit about mountains then!

Airports can be an overwhelming, stressful environment for those on the autistic spectrum, and so Gatwick recently organised a special event where they invited families who have a child with autism to meet with a variety of airport workers.  The idea was to introduce the children to the airport in a safe, non-threatening way, so they know what to expect if they travel from there in the future.  Just as importantly it was a chance to talk to staff about what our children might need, what areas can present a problem etc, and raise general awareness of how they can make the process easier for all concerned.  We were able to have a look at the x-ray machines, have a ride on the special assistance buggy, and meet some of the dogs who work at the airport, who were gorgeous!  It’s good to know that there is assistance available which might be useful to us for future holidays, in particular the option of being escorted through certain areas that often involve a lot of waiting such as security and boarding.  It was a really good afternoon and they’re hoping to run some more in the future.  Now we just need to think about where we want to go on our next holiday!

Summer is now at an end, the school holidays seemed to fly by this year.  For our trip away we decided to go to Lisbon, somewhere we have family and have been to many times, staying at our favourite hotel again.  Travelling with Luis and Beatrice is always full of unknowns; will Luis cope with the inevitable queuing and waiting at the airport?  Will they both be unsettled from the change in routine?  As we go away every year we know more or less what to expect now, which tends to be a mixture of some fantastic times along with some fairly predictable meltdowns.

The flight went very smoothly, no delays, and although Luis no longer has his obsession with aviation I think he still really enjoyed looking at all the planes and going through Gatwick Airport.  We bought Luis and Beatrice a new magazine each before getting on the plane, which helped pass the time on the flight.  As we only take hand luggage that makes things slightly easier as we don’t have to wait for our bags at the other end – the less waiting around the better!

On arrival at Lisbon our next mission was to get some Metro tickets to travel from the airport to our hotel.  Unfortunately we got there in the evening just after the ticket office had closed, so had to join the long queues of often confused tourists trying to buy tickets from the machines.  Luis wasn’t too keen on this queue but managed not to get too distressed.  However what happened next was to cause a fairly spectacular meltdown.  I put the first ticket on the ticket reader and Nuno went through the barriers.  I put the next ticket on for Luis to go through – and it just beeped without opening.  I tried it again – it still wouldn’t open.  Now this is the sort of thing that is guaranteed to make Luis very, very angry and distressed.  As I desperately looked around for someone to help (with Nuno stuck the other side of the barrier unable to do anything), Luis went into a massive meltdown – shouting and swearing at the top of his voice (which is VERY loud).  Thankfully I spotted an employee helping someone at one of the ticket machines and tried to tell him (in rather improvised, panicky Portuguese) that our tickets wouldn’t work.  He gave Luis a rather odd look (along with the many people queuing at the machines who must have wondered what was happening), took us to the ticket barriers and managed to get the tickets to work straight away.  Tip for anyone using the Lisbon Metro – you have to put the ticket in an exact position on a particular part of the reader or it doesn’t work – you can’t just put it on any old how like with an Oyster card!  Lesson learnt!

We stayed at the same Holiday Inn that we have stayed in before – they have large family rooms, a lovely rooftop pool and enormous buffet breakfasts!  The pool and the breakfasts definitely seemed to be some of the main highlights of the holiday for the children.  In fact the pool was a major success – the girls are both really good at swimming now, and Luis enjoys being in the water as well.  He used to have one-to-one swimming lessons for quite a long time, though had to stop eventually as he got over excited and kept doing things like trying to lick the teacher.  Although he never got the hang of doing particular strokes, the lessons were enough to make him confident in the water and be able to make his way through it using a sort of doggy paddle.  Every afternoon on holiday we went up to the pool for a while and the three children all swam and played together nicely, while we got to relax on sun loungers with spectacular views of Lisbon around us – very enjoyable for everyone!  We just had one little incident there involving Beatrice, when there were no beanbags available for her to sit on when she came out of the pool.  She had a bit of a meltdown but eventually managed to calm down.

Luis likes his food and took full advantage of the breakfast buffet.  I lost track of what he had each morning but his typical breakfast would involve a few slices of bacon, sausages, cereal, a few croissants, fruit and plenty of fruit juice.  In the evenings we went out for some lovely meals, Luis ate his way through quite a bit of steak and particularly liked the Brazilian grill where they bring round lots of different meats – I very much doubt he would ever willingly become a vegetarian!  They were all very happy to find that there was a Hippopotamus restaurant in Lisbon – this is a restaurant that does a bit of everything including steaks, we’ve been to it a couple of times in France and it seems to be a firm favourite.  On our first night we inadvertently had a bit of an issue finding a restaurant, but Luis remained fairly calm – we were going to a particular Brazilian grill that we have been to before, but on arrival found it had closed down.  Luckily I had a plan B, which was another Brazilian grill nearby.  Only it turned out that restaurant had also closed down.  Never one to be unprepared, I had a plan C restaurant in mind which wasn’t too far away, and which turned out to be so good that we ended up going there twice.  Disaster averted!

I’ve talked before about Luis’s problems with going to the seaside.  We don’t know exactly what it is that is upsetting him, and he doesn’t seem to know himself, but every time we have been to the beach for a few years now he has had a massive meltdown.  I suspect it is some sort of sensory issues – maybe the sound or smell of the sea, or the feeling of the sand.  In what could be called a “triumph of optimism over experience”, we attempted a trip to Cascais, a lovely seaside town forty minutes by train from Lisbon, and yet again it didn’t go well.  Luis knew we were going to the seaside, and was aggressive from the moment we stepped off the train at Cascais.  We went to a nearby beach where we only stayed for about ten minutes.  Luis was in a dreadful state the whole time we were there – he looked distressed and kept trying to attack Beatrice.  After the beach we went to a favourite ice-cream parlour, where Luis was slightly less upset but still not exactly happy.  There didn’t seem much point in prolonging our visit to Cascais so we went to find out the time of the trains back to Lisbon.  As we had some spare time I had the idea of going to a shopping centre near the station while we waited.  Big mistake.  We needed some water so I suggested going in a supermarket there – unfortunately it was lunchtime and the entire population of Cascais seemed to have chosen that particular time to go in there as well.  The queues for the checkouts were horrendous – Luis was quite silly going around the supermarket (grabbing at stuff on the shelves etc) so Nuno took him out while I queued with the girls.  This caused a massive meltdown, probably a culmination of the effects of the busy supermarket and the obvious stress he had felt at being by the sea.  There was shouting, swearing and spitting – some of the spitting was directed at a lady walking past him, who luckily didn’t notice.  Meanwhile I was in the checkout queue – and could see the other people in the queue looking out at Luis and wondering what was going on!

Needless to say we avoided any further trips to the sea!  The children all enjoyed our other days out around the city, which included a tour of Sporting Lisbon’s football stadium.  As always, travelling on the Metro was a highlight of the holiday for Luis.  He enjoys trying to learn other languages and sometimes manages to work out what things mean.  We were on the Metro one evening when he informed us that there were delays on a particular line – we looked at the electronic information display and sure enough there were delays as he had said – the lines are named after their respective colours and he had worked out which colour was which and somehow understood the information.

All of our children seem to be much more comfortable in urban environments rather than more rural settings.  Trips to the countryside or large parks don’t go down too well, and the beach is obviously rather an issue for days out at the moment.  In cities however they seem to be in their element – I suspect because they love the stimulation of being surrounded by lots of information, as they enjoy reading everything they can see.  One of Luis’s current obsessions is cars, and there are obviously a lot of cars to look at in cities!

The trip home was successful as well, if rather earlier than we would have liked – we had to get up at four in the morning for a 6.40 flight.  On the way back I was reminded again of the unpredictability of air travel, which can cause all sorts of problems for children on the spectrum.  When going through security at Lisbon airport they decided to scrutinise all of our electronic devices, of which we had quite a few!  We had to take the children’s tablets out of their protective cases, we also had Nintendo 2DS’s and phones with us.  I’m not sure Luis was too impressed at this impromptu delay but just about managed to cope with it.  It’s the first time we’ve had our devices checked, which just goes to show that you can never entirely predict what is going to happen at security and at airports in general.  The flight back went smoothly again, then at Gatwick we had to wait in a horrendously long queue at passport control.  I was amazed at how well Luis coped with this, although it was probably helped by the fact that although the queue was very long, it was continuously moving – albeit very slowly.

Beatrice also coped extremely well on holiday, better than she did last year when she was very unsettled whenever we left the hotel.  There were a few “moments” but she was generally ok with going out and about for the day, and we didn’t have any issues with her running away.  Ella loved our trip as well and was the most relaxed and chatty that I have seen her for a long time.

So overall we had another very successful holiday, although  I think we need to make sure that we avoid going near the beach for the foreseeable future – it will be city breaks all the way!



We’ve finally reached the end of what has been a very mixed year at school for Luis, but one that has ended on a high.  His first report from his new school arrived at the weekend, and it’s absolutely fantastic how many positives they are finding to write about him.  Science and humanities seem to be his strong points, and the humanities teacher was particularly impressed with Luis’s knowledge of world geography.  He also wrote that “he is a noticeably positive influence on his class and his enthusiastic and engaging demeanour make him a joy to teach”.  We’ve never read any comments like that about Luis before!  He is doing very well in science where they comment on his confidence at using equipment and “naturally enquiring mind”.  Of course there is also mention of some of his more challenging behaviour at school, but that isn’t the focus of the report.  Anybody who has a child who has struggled in mainstream education as much as Luis has will appreciate just how much this report means to us – the future looks bright for Luis at this school.

There is one interesting point that Luis’s class teacher made when describing how Luis has coped with his new lessons, which are held in different rooms around the school.  She mentions how he has at first appeared distracted, looking all around the room, and says that is because when Luis is in a new environment he has to absorb all the visual stimuli before he can focus on any verbal direction.  I find it very reassuring that Luis’s teachers understand him so well and this is something we have noticed ourselves about Luis.  When we are out and about, especially in new or busy places like railway stations, Luis is constantly looking around and reading every single bit of writing he can see (Beatrice and Ella also do the same thing).  This keeps him calm, and is one of the reasons we haven’t had too many problems when we go on holiday, as there is just so much for him to absorb, especially when it is written in a different language!  I think it also explains why he becomes very unsettled and hyperactive in certain environments – for example at the beach (although there are also sensory issues there), or walking through the countryside.  In those places there isn’t enough to keep Luis’s brain busy and so he becomes frustrated – this is very much the case with Ella as well, who absolutely hates any sort of country or park walk as she can’t see the point in something she considers so boring, without any interesting information to take in.  Give them a walk around a city on the other hand and they’re perfectly happy!

I often think that with autism, rather than the brain not working in the way it should be (which is how many people would view it), the brain is actually working too hard in many ways.  Everybody on the autistic spectrum is different and so just as in people without autism, those with autism have their own strengths and weaknesses, so I can only speak from my experience of my children.  What I do find is that as mentioned above, they are constantly taking in every bit of written information around them, which most people would probably ignore.  They also notice every sound, and their sensitivity to certain noises is due to a heightened sensory response to what is going on around them.  This sensory response isn’t limited to hearing but also to things like the smell and feel of their environment, again things that people without autism wouldn’t even particularly notice, or wouldn’t be bothered about if they did.  When learning about a subject Luis doesn’t just want to know a little bit about it – he has a need to learn every single thing he can, and his brain has the capacity to remember an incredible amount of information.  People with autism struggle with the social side of life, but can have heightened abilities in other ways – and who is to say that these abilities are any less important than social abilities?  Society needs a mixture of people who are good at different things, and that includes those who may not be great communicators or the life and soul of a party, but have the focus to be able to go into such detail about their chosen interests that they come up with the discoveries and scientific advancements which benefit all of us.  I once read a quote from a professor who has autism themselves, in which they pointed out that if we were all only good at social things, humans might still be sitting around talking in caves.  I suspect that a fair proportion of the influential scientists throughout history may have been on the spectrum to some extent!  Obviously I’m not saying that the social side of life is unimportant, and we try to encourage the children to develop their social skills as much as they are able, but at the same time we recognise that this is never going to be their strong point, and forcing children into social situations where they feel uncomfortable is never going to do them any favours.  Of course it is not just about dislike of socialising, but also about inappropriate social interaction.  Luis is actually too familiar with people sometimes and will go up to random strangers and ask them questions – luckily most of them don’t mind as he has such an engaging manner!  Living with autism does entail many challenges, but where possible I find the most important thing is to focus on any positives that it can bring.

Luis continues to be interested in taxis.  When we’ve been out and about he’s told me off if I’ve said that particular vehicles are taxis when he says that they are actually private hire vehicles.  I wasn’t aware there was a difference (apparently taxis can pick people up from the roadside, whereas private hire vehicles can only be booked in advance), so once again Luis has taught me something!


So, it is now (almost) official that Beatrice is autistic.  I took her to the Child Development Centre at our local hospital yesterday to see the paediatrician for the initial assessment in the diagnosis process.  He asked me various questions about our concerns, took details of her development from when she was a baby onwards, and asked Beatrice herself a few questions.  Based on this initial assessment he decided that we should just “get on with it” as he put it and we also did the 3di computer questionnaire, which often isn’t done until a later appointment.  This is a series of questions that cover many areas of a child’s communication skills, general behaviour, reactions to things etc, and is something that we didn’t have to do when Luis was diagnosed.  At the end of this test it gives scores for various subsections, and any scores above a certain threshold are of clinical significance.  Beatrice’s scores on all sections were considerably above these thresholds, I was actually surprised how high they were.  The doctor said that based on his observations of her and these scores she would definitely get a diagnosis of Asperger’s.  Before we get the official diagnosis we need to have the social communications and speech and language teams observe Beatrice at school, then go back for the official diagnosis – although he said that the purpose of those teams going into school was more to find ways to help her, rather than to confirm the diagnosis which seems beyond doubt.  Beatrice did exhibit quite a few what I would call “autistic type” behaviours in the appointment.  He noted that she wouldn’t make any eye contact with him, and when he asked questions about her friends she got very upset and wouldn’t answer him.  She also made lots of random noises.  Autistic people often take language too literally and may not understand certain ways of saying things – when we saw this same doctor with Luis he tested this by asking Luis what it would mean if he asked Luis to “give me a hand”.  Luis’s language skills are actually quite good in this respect and he knew that it meant to help, rather than to literally give somebody a hand.  Beatrice on the other hand (no pun intended!) became very distressed when the doctor asked her this same question and wouldn’t answer him at all – presumably because she didn’t really understand what it meant.

I’m now going to talk about something which will be very familiar to most people who have children with autism, ADHD and other related conditions.  For some reason a diagnosis of autism is often called a “label” by those who don’t understand what autism is.  Parents of children who are getting a diagnosis of autism, ADHD etc are accused of wanting a “label” for their child.  This is wrong on so many levels.  For a start, and perhaps most importantly, nobody ever actually “wants” a diagnosis of anything for their child.  It means that their child is obviously struggling at either home, school or normally both, and that their everyday lives are made considerably more difficult by the problems they face – this is not something that people would want just for the sake of it.  Then there is the way that the word “label” is applied to these conditions, when they wouldn’t dream of using it to describe a diagnosis of another medical condition.  This is quite insulting to people with these neurological conditions which can affect every aspect of life for both themselves and their families.  Getting a diagnosis of autism does make a difference, not as a “label”, but as a way of getting help, accessing services, and enabling those looking after the child (especially at school) to better understand the child and why they may be struggling with certain things.  This is why we have decided to pursue a formal diagnosis for Beatrice – her autistic traits are getting increasingly obvious, and having an official diagnosis of autism will be a great help to anybody who deals with her.  Paediatricians and the other professionals involved in this process are highly skilled and experienced professionals, they only give a diagnosis if one is warranted, and don’t just give them out unless they are sure one is necessary.

On a lighter note, on Saturday we went to the summer fair at Luis’s school.  They have beautiful grounds and we had lovely weather so it was a great day – all the normal things like bouncy castles, face painting and food, as well as football skills demonstrations by a world champion, and a tour of the school.  Luis hasn’t always coped at school fairs in the past, but this one had the advantage of being much less crowded than previous ones we have been to so there was no queueing involved.  There was one rather dramatic incident though.  Luis and Beatrice bought drinks that were in flimsy plastic glasses, which they balanced on the grass next to them while they ate their barbecue sausages.  I had a horrible feeling that this wasn’t going to end well.  As predicted, Beatrice’s (almost full) drink fell over and spilt all over the grass.  Cue a very distressed, crying Beatrice.  Unfortunately the sound of Beatrice crying is something that Luis just doesn’t seem to be able to deal with and it makes him very angry – and this occasion was no exception.  He started to shout and launched a physical attack on her – knocking his own drink over in the process.  I quickly rushed Beatrice over to another part of the field a safe distance from Luis, as there was no way either of them would be able to calm down until they were separated.  Luis shouted for a little while longer but eventually peace was restored.  This is a good example of why I find it difficult to take the three of them out by myself in the holidays, as I wouldn’t be able to physically separate them if I was on my own – and Luis needs somebody strong to restrain him from attacking his siblings when he is that angry.  Add to that the fact that Beatrice is also autistic and has meltdowns due to her sensitivities to various things (which then sets Luis off), and it’s little wonder that doing things at home is often the easier option!

On the subject of going out, Luis has been having lots of trips with his school recently.  On Monday he went to a water park in Bracknell, and the next day to Littlehampton to do some science on the beach.  I’ve mentioned before about how Luis can be rather unsettled and hyperactive when travelling – on trains he can be rather loud and gets upset if he doesn’t get a seat, the train is late etc.  Going by car isn’t an easy option either as when he shouts he is extremely loud and distracting, and this was shown on one of his trips this week.  Apparently he was angry in the van on the way back, was pulling his teacher’s hair, and was shouting so loudly that the driver had to pull over twice until Luis calmed down.  This shouting (and kicking out, possibly hurting those around him) could cause quite dangerous situations, which is why a trip in the car isn’t as easy for us as it would be for most families.  We do have days out and go to places, but it does require a bit of planning (finding ways to entertain and distract Luis) and dare I say bravery on our part!  City travel is his favourite sort of travel as he loves underground systems, so he is looking forward to going on the metro in Lisbon next month!

Beatrice went on a school trip last week to Worth Park, where she did activities including handling various creatures – in the photo she is stroking a cockroach called Alison!  She also held Millie the giant millipede and enjoyed watching some tortoise racing.  It was a nice day, although Beatrice wasn’t keen on the sports activities.  There was a sort of mini sports day which included running, throwing soft javelins, cricket etc.  Her team didn’t win the running and so she had a meltdown.  She ran off across the field and into a meadow area, I had to chase her as she had no intention of stopping and was heading towards a road.  Once I’d caught her she was quite distressed and refused to do any more activities, although she did have a go at the cricket near the end.

I sometimes refer to Beatrice’s “random” behaviour, which is when she seems to go into her own little world and it is difficult to get through to her.  When she is like that she will repeat words over and over again, or make high pitched noises, or throw herself onto the floor repeatedly.  Although I have called it “random”, it isn’t actually random as there must always be a reason for it, even if it’s not immediately obvious to us what that reason is.  We’re finding that there are some things that are regular triggers for this behaviour.  One of these is any type of transition, for example when Beatrice has to put her shoes on to leave the house, or when she has to leave the classroom to come home.  There have been several occasions recently where she has refused to come out of school at the end of the day, for no apparent reason, and I have had to go into the classroom to try to coax her out – preferably before she runs away and I have to chase her around the school, which has happened a few times now!  Last week when she did this I went in to find her sitting in a tray full of pebbles, part of their sealife topic.  She kept saying that she needed to play with the “rock pool”, even though she knew perfectly well that it was hometime.  As I’ve mentioned before, getting out the pool after her swimming lesson is also an issue now, although I found last week that wrapping her in a big towel as soon as she comes out seems to help her stay calm (many thanks to the lady from our autism group who suggested that!).  Sometimes though there is no obvious trigger, and I think it must just be her reaction to all the social pressures she faces at school, as well as sensory issues.

We have had the appointment through for Beatrice to see a paediatrician at the Child Development Centre at our local hospital next week, I’m pleased it came through so quickly as I was expecting it to take much longer.  I think that at this initial appointment we will discuss our concerns about Beatrice, and the doctor (one we have seen before about Luis and who we thought was very good) will then decide whether to proceed with a full assessment.  If he does, then Beatrice will be observed at school by the social communications team, speech and language etc, and we will have lots of paperwork to fill in.  At the end of the process we will have another appointment with the paediatrician, and they will decide whether to give some sort of diagnosis or not.  I think that is how it works anyway, as it has changed slightly since Luis was diagnosed.  Yet more form filling and appointments for me to deal with!

Beatrice’s latest interest is quite unusual for a girl her age.  It is Ford Transit vans!  Most of the time on the way to school she won’t talk to me now, but she does make an exception if she sees one of these vans, and she is very interested in all the different varieties of Transit van.  She also likes Ford Focus cars and gets very excited when she sees them.

Luis is more interested in vehicles again as well (not Transit vans though!), in particular taxis, which is obviously as a result of him being taken to school in a taxi every day.  If we go past any taxis he looks at the licence plate and knows the licence numbers of the taxis used by other pupils at his school.  He has also become interested in music and listening to the top 40 music chart, unfortunately for the rest of us he likes to sing his favourite songs in his loudest voice!  School is still going well, and he went to a farm to do sheep shearing this week which he enjoyed, they do a wide variety of activities there and he is kept very busy.  We’re still waiting for his ADHD assessment.  The initial appointment we had with CAMHS  was in January, and from what I’ve heard we might not see them again until the autumn – it’s really not good that people have to wait so long to be seen.

In the past it has occasionally been suggested to me that Beatrice could be copying Luis’s behaviour.  I think this is sometimes said by well meaning people to parents who have an older autistic child, and a younger sibling who is also showing traits of autism, and unfortunately it can often delay the process of the younger child getting the help they need if any concerns are dismissed in this way.  I know for a fact that Beatrice isn’t copying Luis as she shows many different autistic traits to him, and a lot of her behaviour, and the way she reacts to things, isn’t like him at all.  For example Beatrice copes well with things that Luis has never coped with, such as sitting through assembly at school.  Whereas Luis doesn’t struggle with transitions in the same way as Beatrice, and has a better appreciation of humour than she does – if you make a joke Beatrice will normally take it very literally and get angry and upset, whereas Luis actually has a very good sense of humour and will usually appreciate that what you are saying is funny.  It just shows what a spectrum the diagnosis of autism covers, and even though two people may have their own very “typical” autistic characteristics, those characteristics may not be the same and they may present in very different ways.

We’ve had very hot (for this country anyway) temperatures over the last few days, especially yesterday when it reached about thirty two degrees here.  Lots of people seem to really struggle with this, and say that their children were too hot, unable to sleep and distressed.  For some reason our three didn’t seem bothered by it at all, and even though it was twenty nine degrees upstairs last night they carried on as normal and slept well.  We have been to hot countries on holiday quite a few times now so I don’t know if that has made a difference to how well they tolerate the heat.  I’ve also heard that people with autism can be either under or over sensitive to sensations such a pain or heat, so perhaps that is why they don’t seem to notice the hot temperatures.  A few years ago we went to Lyon in France during a heatwave, the temperature was about forty degrees and I don’t think it dropped below thirty at night, and our hotel room had no air conditioning.  I’ve been to hot countries like India and Thailand, but that hotel room in Lyon is the hottest I can remember being, however the children weren’t particularly bothered and still slept well.  We’ll be going to Lisbon this summer where it will be hot, so let’s hope they still cope with it then!



This is the first thing that Luis has made in DT at his new school – a bug hotel!  He hasn’t done anything practical like this before, he had to use tools including a saw to make it.  We have put it in the garden and hopefully some bugs will soon be taking up residence!

Luis is really enjoying everything at his new school, he has managed to join in with all the lessons and has done many “outdoor education” activities including two kayaking sessions.  I have a weekly phonecall from his teacher to let me know how he is getting on and it is mainly positive so far – although I think now that the novelty of being somewhere different has worn off they are starting to see some of his more challenging behaviour.  So far this has all been fairly “low level” stuff as the teacher herself described it – mainly interrupting in class and talking over the teacher, and trying to wind up some of the other boys (although he has actually made friends with the boys in his class quite quickly).  The important thing is that as the school specialises in social, emotional and behavioural difficulties I imagine they will take all of this in their stride.

I have been thinking about the fact that every boy in Luis’s school has probably had a long, hard journey to get into that school.  As it is a special school all the boys there have a statement of special educational needs (now replaced by the EHCP – Education, Health and Care Plan).  Some of them have autism, some have ADHD, some have been diagnosed with other conditions such as ODD (oppositional defiant disorder).  Some may have no official diagnosis but have behavioural and emotional problems to an extent that they need special educational support.  What they all have in common is that they won’t have been able to cope in mainstream education.  To get a diagnosis of autism, ADHD or other conditions is often a long process involving a lot of paperwork and meetings with professionals.  To get a statement is another long process, and statements are only given if it can be proved that a child can’t access the curriculum without substantial extra support.  Then there is the fact that many of the boys at the school will have been excluded from previous schools – some will have had many short term exclusions of a few days here and there, others will have been permanently excluded and may have been out of school completely for some time.  There is also the whole process of agreeing with the relevant authorities that a special school is the most appropriate option, researching what is available and having the paperwork submitted to any potential schools, before hearing which ones are prepared to offer you a place.  So it is very different to the experience that most people have of choosing a school, where children go to a mainstream school of their parents’ choice, which normally just involves filling in the application form and naming a preferred local school, or maybe moving into the catchment area of a good one.  I haven’t met any parents of other children at the school yet (a large proportion are boarders and come from some distance), but can imagine there would be plenty of tales of despair, frustration and heartache that many of them could tell.  I would think that like us they would all be extremely appreciative of the fantastic support provided by this school, which really does offer the boys the chance of an education that just wasn’t possible for them personally in a mainstream setting.

We have started the process of getting Beatrice assessed for autism.  I took her to the GP last week to get a referral to the Child Development Centre at our local hospital.  Obviously the GP only gets to see your child for a few minutes in the appointment, and has to decide from what you tell them whether a referral is warranted.  So it was very handy that Beatrice decided to display some quite odd behaviour in the appointment.  She sat on her chair rocking backwards and forwards, making random noises in a high pitched voice.  This is the sort of behaviour we get a lot of at home, where she will sometimes make strange sounds for hours at a time, and you often can’t get any sense out of her when she is like this as she seems to be in a world of her own.  Anyway, the GP seemed happy enough to refer her, and we’ll also be getting a referral from the school nurse.

I have mentioned that Beatrice has had a few issues at her swimming lessons, where she has refused to get out at the end of the lesson and had to be carried kicking and screaming (literally) to the changing rooms.  We had another incident last week, where she suddenly refused to do what the teacher was asking during the lesson and seemed to be in some sort of trance.  I was called down to talk to her, and couldn’t get much sense out of her.  Luckily she wanted a float that the teacher had put at the side of the pool, which meant she had to get out to get it – I took the opportunity to stop her getting back into the pool and then had the difficult job of getting her to the showers and changing rooms.  The showers there are another source of problems – some of them make a strange noise when the water is turned on and off, and Beatrice gets very distressed about this noise and sometimes we have to go to different showers as she is so upset.  We’re now considering what to do about her swimming lessons going forward.  She really likes swimming and can swim quite well now, and is particularly keen on going underwater – she spends half the lesson ducking under as she enjoys it so much.  I do want her to carry on with the lessons, but for a few weeks in a row now we have had problems and if this continues we may have to stop.  I think that like Luis she must have all sorts of sensory issues with the swimming pool.  It is a large, echoey building, then there is the feel of the water itself, the smell of chlorine, the sounds of the showers etc – I think it must all be too much for her, even though she does like the actual swimming.  That is often the case with children who have autism.  They may not have problems with the actual activity that they are doing, it is all the other aspects surrounding the activity that they find overwhelming, aspects that other people probably don’t even notice.

Until last month I always had all three children with me on the walk to school.  Then things changed – Luis goes by taxi from home to his school, and Ella walks by herself, meeting up with friends on the way.  So now I just have Beatrice to walk with, which seemed quite strange at first.  We were able to have some lovely chats together, without being interrupted by Luis who likes to have his say on anything we are talking about!  For the last couple of weeks though Beatrice has decided she doesn’t want to talk any more.  When we leave the house, or on the way home, the first thing she says to me is “I just want to walk quietly and don’t want to talk”.  So we walk along in silence most of the time, with Beatrice flapping her hands every so often.  I must admit though that this is better than the random shouting we have often had on the way home, so if her way of keeping calm is to be silent then that’s the better option!  As with many other aspects of her behaviour it is slightly unusual, and just another indication that she appears to be on the autistic spectrum.

Beatrice has always been fascinated with shapes and loves toys like Geomag, which has little magnetic rods and balls that you can connect to make all sorts of creations.  I recently bought something similar that has magnetic triangles and squares, and Beatrice has been playing with it for literally hours after school.  She has always loved making neat arrangements of things, and so the patterns she can make with these obviously appeal to her.  Numbers are another of her favourites, and sometimes in the evening she will decide to read one of the maths study guides we have – which is for Key Stage 2 so a bit too advanced for her at the moment, but she seems to enjoy giving it a go anyway, and anything that keeps her calm has got to be a good thing!



It’s been a long time since I posted, life has been busy and there have been some changes for us.

Mainstream education has always been a struggle for Luis.  Right from when he started nursery at age three, he was never really part of the class.  For a long time we thought that despite his difficulties it was better for him to stay in a mainstream school with extra support.  There were two main reasons why I personally felt that way.  Firstly, there was always the expectation that as Luis got older he would start to cope better with school and be able to take part in lessons with the rest of his class.  My second concern was that he needed the academic stimulation that mainstream can provide – I didn’t know much about the special schools that are available in our area, and I knew that some special schools wouldn’t necessarily offer the full range of academic opportunities that Luis may need, especially as he gets older.  They cater for children with learning disabilities, and many autistic children like Luis fall into the category of needing a great deal of support, but not having learning difficulties as such.  I’m not criticising these schools in any way, and in particular they do a fantastic job of teaching life skills, including vocational skills, that will help their students lead as independent a life as possible when they’re older.  Of course it’s all still a bit unknown when it comes to Luis and how well he will actually do in terms of exams and qualifications.  He’s very bright, but with a child who has autism that doesn’t always mean they will end up doing GCSE’s, as there are so many other factors to consider, and the pressure and expectation of doing exams can be too much for some children.  Also they may find it very easy to learn about things they are interested in, and memorise facts, but the sort of analysis that is required for academic study may not come so easily to them.  At any rate, I think Luis needs to have the full range of options available to him as only time will tell what he will be able to do further on at school, and his new school will definitely work on finding out what his strengths are and helping him to make the most of his future.

With this in mind, by the time we had Luis’s annual review in December we had already been researching the various special schools that he could go to, as I think that everyone involved with Luis had realised that mainstream school just wasn’t going to work any more.  Instead of becoming more integrated into the class, Luis had actually been spending less and less time there, and was doing little academic work.  It was increasingly feeling like he wasn’t really part of the school any more.

Fast forward to now and Luis has found a new school and started there at the beginning of May.  The school is a specialist special school, which caters for boys who have challenging behaviour, whether it be connected to having autism, ADHD or other conditions.  Luis is in a separate autism unit, where there are only four boys in his class, and goes into the main school to use certain facilities and attend assemblies etc.  It really seems the best of all worlds and should be perfect for him – they are specialists in challenging behaviour and find positive ways of helping the boys deal with social and emotional problems, and also provide a good academic education with the option to do a full range of exams or vocational qualifications as appropriate.  Since he started there he has been on various trips, including to the seaside, a trampoline park, outdoor activity centre, supermarkets, parks and even (much to Luis’s delight) Burger King!  He has done more work than he has ever done before at school.  As he is in such a small class with teachers who understand autism, he seems to be able to focus on what he is doing without the distractions of a large class, and has done a full range of lessons including science, cooking, drama and DT, even doing tests in English and maths.  Then of course there is the matter of something that is of the utmost importance to Luis – the quality of the chips at lunchtime.  The chips at the new school are crispy and salty, whereas at the old school they were soggy.  What more could he want?  I can’t begin to describe how relieved we are that Luis is in a suitable school now, it feels like he is going to thrive there, and he has come home so happy every afternoon.  We are still awaiting his ADHD assessment, as we feel that this could help to explain his hyperactive and impulsive behaviour – the waiting list for assessment is several months and I think we will be waiting quite a while longer.

For several months Luis’s main interests were football cards, airports and airlines.  He now has a fantastic knowledge of world geography as he studied all the main (and many less well known) airlines, where they fly to, and details of the airports themselves.  However over the last month he hasn’t been researching planes as he has gone back to his train obsession.  So now he will talk about train services, especially London Underground, study the network maps, and is particularly obsessed with Oyster cards!  He even has plans for a new South London rail network.  I have absolutely no doubt that when he is older he will be able to find his way around using public transport, and make an excellent travel consultant!

We have had concerns for quite a while that Beatrice is also on the autistic spectrum, and as she gets older this is becoming more and more obvious.  I’ve just made an appointment with the GP and spoken to the school to start the process of getting her referred for an ASD assessment, as I think that if she is autistic it’s best to get a diagnosis sooner rather than later.  Beatrice is very different to Luis at school – she doesn’t have problems with being in class, enjoys assemblies and other things that Luis never coped with, and is doing very well academically.  We’re hoping that she won’t need any additional support, but if she is on the autistic spectrum then it is important for staff to be aware of the fact, as there may be times when that needs to be taken into consideration.  She has had a few meltdowns this year at school, and from what I can see the main trigger seems to be if she doesn’t have time to get her work done, or if she gets something wrong.  Socially I think she copes fairly well and she is very friendly, but I’ve noticed that her overt friendliness (for example she loves to cuddle her friends) often hides the fact that she doesn’t actually talk to her friends very much.  Autism often goes unnoticed in girls because they are better than boys at observing other children and trying to copy them, which can work to some extent when they’re younger, but as they get older the social rules become more complicated and then they start to struggle.  When I’ve helped out at the school I’ve noticed that Beatrice often plays by herself, she likes to do things such as counting the paving stones in the playground, and if she is interrupted when doing this she gets very upset and has to start all over again.  She joins in with games that have some sort of structure to them (like hide and seek), but in our experience seems to lack the ability to join in with imaginative play, and finds it hard to “chat” in the way that girls tend to normally do.  Thinking back to when she was younger, she used to play in a very structured way with her toys.  She would spend a long time lining them up or making arrangements of objects so they formed patterns.

I think Beatrice is also a classic case of a child who “copes” at school, where staff don’t notice any problems, but who then lets out all the pent up stress when she comes home.  On the walk home from school Beatrice will often display very random behaviour – she will repeatedly shout out odd words, will sometimes throw herself to the ground, and will occasionally start hitting me and shouting, for no obvious reason at all.  She is actually starting to do this more rather than less now, and I think girls often do increasingly struggle as they get older and the social differences between them and their peers become more obvious.  She also seems to have difficulties with transitions, when she has to leave one place to go to another.  We have often had problems when it is time to leave the house, though she calms down once she is actually out.  At her swimming lessons there have been a couple of occasions where she refused to come out of the pool at the end, and I have had to enlist the assistance of the special needs swimming teacher to help fish her out and get her (shouting) to the changing rooms!  She has also had meltdowns at her orthoptist appointment and at the end of a party recently where she ran away from me through the bowling alley, if I hadn’t managed to catch her I don’t know where she would have ended up.  This also happened in town last week and when she was playing outside our house – she ran off down our road, both Luis and I chased her and Luis managed to catch her just before she got to the next road along.  Rather worryingly, when I asked her afterwards why she hadn’t stopped, she said she was making her way to the main road!  Luis remained calm throughout all this and I gave him plenty of praise and a reward for being so helpful!

At home Beatrice has some interests that are quite unusual for a girl of her age.  She reads our medical encyclopaedia for hours, and is particularly interested in CPR and emergency childbirth!  She also loves to read instruction manuals, and has always had a fascination with signs of any sort – when we are out she has to read any sign she sees.  Of course none of these things are unique to children with autism, but along with her other autistic traits they do tend to point to a certain type of differently wired brain.  She also does a lot of hand flapping when she is excited, in fact more than Luis does.  Thankfully she doesn’t have the same problems with her fine motor skills as Luis, and is good at writing and drawing, which he still finds quite difficult.

So we still have plenty going on in our lives, with a lot more appointments to look forward to.  The paperwork and meetings with professionals never seem to end when you have children with additional needs!




This photo shows Luis having a go on a Tube train simulator at the London Transport Museum.  He was lucky enough to win some tickets in the school summer fair, there couldn’t really have been a more appropriate prize!  He enjoyed looking around the various exhibits, and particularly liked the old Tube train carriages that you could sit in.  We had a nice day out in London and Luis managed to stay very calm, even on the train.  Trying out various Apple products in the Apple store in Covent Garden was also a highlight!

As I mentioned in my last post, Luis has been coping very well with trips out recently.  There is still one exception to this – he just doesn’t seem to be able to cope with going into Crawley town centre at the moment, and when we went in half term became very aggressive.  So shopping is still best avoided with Luis, unless it involves technology!

We are now fairly certain that Luis has ADHD in addition to autism.  He displays a lot of hyperactive and impulsive behaviour, particularly at school, and we are going to start the assessment process for this.  We have also decided to look into the possibility of medication to help him with these aspects of his behaviour, as I know that for some children it can make an enormous difference and be the deciding factor in whether they are coping at school or not.  ADHD is one of those conditions that sometimes gets negative publicity – some (uninformed) people think that it is a “new” condition that is an excuse for bad behaviour, and that parents are too quick to medicate their children.  Anybody who knows the effects that ADHD can have on a child knows how damaging it can be on their lives and on the child’s ability to access education, especially in conjunction with other conditions such as autism, and parents are very lucky that they do have the choice now to give their children something that can help them.

Luis was much more relaxed about Halloween this year.  We don’t go trick or treating, but do have a big bag of chocolates to offer to any children who knock on our door.  In previous years Luis became quite distressed about the fact that I was giving out chocolate to other children, which he would have preferred to keep for himself!  This year his attitude was very different.  Whenever anybody knocked, Luis would open the door and offer them the chocolates himself, with no issues about them taking it.  Just a little thing, but it shows how he is changing and is understanding situations better as he gets older.  We did of course make sure that we had plenty of chocolate to keep for ourselves!

Football is now a major obsession!  Luis takes note of all the Premier League matches that are on, and remembers all the scores.  He has also started collecting football cards and stickers.  This is an ideal interest for Luis as there are so many statistics involved, and he is constantly giving us little facts that he has learned.  Once again we have noticed Luis’s great ability to remember dates.  He remembers all the dates of the matches, dates of things that he has done, and we have now discovered that he even remembers the dates of when we wore certain outfits!  When I come down to breakfast in the morning he will say  “you’re wearing your (whatever item of clothing), you last wore that on (date)” – including particular combinations of clothes and when I last wore them!  He does the same with Beatrice’s outfits.   This morning I was talking about when we had been to see some friends last year, and he instantly remembered what date we had visited them last summer.  As I’ve said before, the way that Luis’s brain works is fascinating!

Luis goes to a football club for children on the autistic spectrum, called Crawley Capers, which is a joint venture between Crawley Town Football Club and Autism Sussex.  They recently received the exciting news that they are finalists in the People’s Millions lottery fund, where they have the chance to get £50,000 to continue their activities if they receive enough votes.  A programme is going to be shown on ITV about the projects, so last Friday I took Luis to Crawley Town’s football ground to be filmed for television!  They filmed the children playing football, which Luis is increasingly enjoying – he doesn’t play a proper match but enjoys trying to score goals, and keeps score of the other children’s goals.  The programme is going to be shown on Wednesday 26th November, probably in the local news slot, although it will only be available to people in the Meridian East ITV area (which rather bizarrely means that people in Crawley can’t watch it as we are in the London region!).  So we would be grateful for as many votes as possible please, to keep this great football club going – as Luis shouted very loudly at the filming “Vote for Capers”!