Tuesday 30 September 2014

A Step in the Right Direction

It would be fair to say that the week continued in the same vein as it started. The 1-5 behaviour scale that school use to describe Boy Wonder's day hit its first 5 and by the beginning of this week rose to 7. For the literal amongst us this isn't technically possible but I guess it is just an illustration of the heightened difficulties,

The weekend was pretty mixed in terms of mood. Boy Wonder had a busy day on Saturday, his team winning 10-0 at football and then going to dance. Sunday was a more stay at home day with Super Gran and Biker Gramps coming for tea. There were a few incidents with the neighbours children and Boy Wonder being too rough and vocal but we managed it by giving time out and refreshing the 'rules of play.' Towards the end of play he cried and said they he would loose all his friends because he is so bad. We reassured him that his friends know that he can sometimes get over excited but using rude words is not acceptable. He appeared to understand.

A fair amount of time had been spent talking to school about behaviour management strategies and they have gone all out to pull in resources from everywhere possible. It is a classic example of reaction and how the 'system' works. The reality is that home life has seen little change except for an improved sleep pattern and appetite. However, the behaviour at school is what we see at home, hence our lengthly battle for support.

Unfortunately communication this week has resulted in a meltdown this morning. Boy Wonder arrived home with a timetable of when he would be in class ( which is hardly ever and not at all on some days!) he angrily told me that the rest of his day is in reception class with a TA. Oh jeez, an angry child in a class of 4 year olds is just an incident waiting to happen! I agreed with Boy Wonder that I would talk to his teacher about it in the morning.

The school journey this morning was a difficult one. Boy Wonder was already very worked up. I asked him to stay with me whilst I spoke with his teacher which distressed him further. He then caught sight of the school photographer and started shouting ' she's Chinese!' over and over. We got into class and was about to speak to the teacher when someone decided to jump ahead of us. Consequently Boy Wonder became more frustrated and I gave up. We went into the playground.

Before leaving school I spoke with the Head about the potential ticking time bomb of Boy Wonder going in to reception and the added issue of him feeling excluded and reinforcing his belief that he is stupid. She got it and explained that they were crisis managing and are working hard to get it right. I explained that we understood this but the reception class is not the solution. We compromised and agreed the same strategy but in a class with older children would be more suitable.

On leaving school, I heard Boy Wonder shouting me and crying. The next minute he ran at me and clung on for dear life! I sat him down and calmed him. He had run out of the class because he was told he was going to reception. I explained what I had just spoken to the head about and he started to calm. Eventually I left him in the hands of the TA and she took him to the chill out tent.

After a rather long day of worrying and a midday phone call to check Boy Wonder was okay, I collected him from school. He was very high and this resulted in him jumping on the tables and running around them in the classroom. I gathered his belongings and took him out to the car.

This evening was fairly settled due mainly to him being exhausted. Before going to bed he asked if he could take a stress ball to school as he is helping to set up the chill out tent. One little request that demonstrates a huge step in the right direction.

Tuesday 23 September 2014

So far .....

The weekend was a stark reminder of life before medication and was consequently hard work! However Boy Wonder managed to hold down a game of football without too much difficulty but dance afterwards  proved to be too much and his concentration spam waned significantly.

Saturday afternoon was spent at home, baking and playing on the computer. Grandparents babysat in the evening whilst Superman and I went out with friends for a short while. The brief description of how Boy Wonder behaved 'he's been a bloody bugger!' made us smile but was probably quite accurate!

Superman took Boy Wonder on a long bike ride on Sunday and we implemented the evening exercises. In short Boy Wonder was highly energetic, impulsive yet happy. It was nice to have a change from anxiety and aggression but by Sunday evening we were exhausted.

One significant positive has already arisen in that Boy Wonder is falling to sleep at a reasonable time and sleeping through the night. This has happened for two nights in a row and although its early days, is the first time that he has ever slept for more than a few hours.

The school mornings so far have been easier than anticipated with Boy Wonder not really becoming too excitable until leaving for school. However, school itself has been a whole different ball game. Boy Wonder has struggled from start to finish. Lots of movement breaks, time out and reassurance required on day one, moving to no assembly's or play times on day two due to not being able cope with the other children. Hitting out, jumping all over the other children and generally be over aroused by the environment meant that more time has been spent out of the classroom than in it.

Although Monday evening was fairly settled, this evening was difficult. Boy Wonder fought , shouted and seemed to struggle with any sort of demand. He eventually settled at Ju Jitsu but during training he got kicked in the face and ended up with a bloody nose!

So far it has been a testing time but the one feeling it the most is our boy and we are determined not to lose sight of that. The side effects to the medication have not only instigated  weight loss but quite possibly contributed to the heightened agitation. Despite the recent difficulties, Boy Wonder does seem happier and that is worth it's weight in gold.  His presentation is also allowing us to pin point the difficulties with greater ease and providing opportunities to put in strategies to help  him. And that can only be a positive thing.

Saturday 20 September 2014

Big Decisions!

On picking the children up from school on Thursday, Boy Wonder came out of the classroom with a shredded T-shirt which was also very chewed. However his teacher and Boy Wonder said that there had been no real problems and it had been a fairly settled day. As we walked outside, he started to hold his tummy and double over, seemingly in pain. Tummy ache is always a difficult call with Boy Wonder as he gets it when anxious but will also use its presence to not go to clubs which often provide a welcome distraction to the anxiety. However, if this is the case, Boy Wonder generally stops mentioning the tummy ache fairly quickly as he has told me once so he doesn't need to tell me again.

We drove to the clubs but Boy Wonder still appeared to be in some pain as intermittently he would hold his stomach and crouch like he was having spasms. This was unusual for him and is only really seen during periods of acute anxiety. Boy Wonder is rarely ill in general terms. We dropped Cat Girl off at Ju Jitsu and I made Boy Wonder an appointment with the GP as 40 minutes on he was still seemingly in quite a bit if discomfort. He didn't protest about going to the Doctors or missing football which convinced me that I had made the right decision.

The appointment ran 40 minutes late which only increased Boy Wonder's anxiety but once in the appointment he was checked over and weighed. The GP said that she was happy that there were no physical indicators to suggest something such as appendicitis but with the symptoms and the state of hisT-shirt, anxiety was the likely cause. She asked for a urine sample to send off and we spoke about his weight ( he has lost another 1kg, making it 2kg lost in a month,) went through his medication and identified the ADHD medication as the only one with appetite suppressant side affects that was likely to be contributing to the weight loss. She also re referred to the dietician for supplement support although was aware that we have been giving Boy Wonder build up shakes daily and this wasn't sufficient to support weight gain. The GP said that she would write to the Consultant and request a medication review and asked me up ring the hospital to request this also.

Boy Wonder rested for the remainder of the evening and the tummy ache subsided eventually.

Yesterday was the day of the meeting with the LocalAuthority and school to agree the Statement of SEN. Before this I rang Boy Wonder's consultant and explained about yesterday and the weight loss. We agreed an immediate medication break from the ADHD medication to allow for recovery and a review in four weeks.  She expressed her concern that his health needs outweighing the positives of the treatment so needed to be managed. Superman and I had, had this same conversation last night and drawn the same conclusion.

During the meeting we discussed the areas that Superman and I had raised as inaccuracies in the statement and were relieved to find that all of the points were recognised and added. The teacher contributed by illustrating a typical day and the difficulties they faced. The new Head appeared very proactive and decisive about things and as a result the statement was agreed in principle ( the actual support hours to be agreed at panel, but I was assured that they wouldn't be reduced!) and we then spoke about the medication change. The Head responded by saying ' forewarned is forearmed and therefore we will discuss a management plan to put into place for Monday as required.' The LA stated that the school can call an early review for the statement at any time should they find that the statement is no longer sufficient. In addition the LA confirmed that the OT is experienced in autism and sensory processing disorder and they are happy for her to liaise with our OT for consistency. A speech and language therapy referral was also agreed along with the use of earphones in class to block out some noise and the use of his ( not so healthy ) high calorie snacks at break time. We ended the meeting and for the first time in four years we felt that we actually had Boy Wonder's needs agreed. We are just hoping now that the statement hours allow for the work needed.

So we are now entering a month of raw ADHD. We have spoke to Boy Wonder about it and he seems  very happy that he will have more energy! I don't think he quite grasped the point but hey ho. Hold on to your hats!            

Friday 19 September 2014

Challenges and Erruptions

The last two days of school involved similar challenges to that of the first day back. Boy Wonder was clearly overstimulated and this resulted in shouting out in class, using bad words and generally struggling to concentrate for any length of time.

On collection from school on Thursday, he became so high in the playground that his teacher again took him inside. After collecting Cat Girl, we collected him and I was helped to get him to the car. There had been a particular incident during the afternoon which erupted once in the car and consequently lasted for a couple of hours. I took him to dance where he managed a short amount of time but then spent some time out with one of the tutors. He rejoined the group for the final ten minutes.

Friday appeared to be a fairly settled day in comparison. Boy Wonder and Cat Girl went to after school club for a short while until Superman finished work and then came home and played outside. All seemed to be going well until Boy Wonder erupted into a shouting and hitting out frenzy. The other children ran off and we didn't see them again all weekend!

The weekend was a bit more settled with football and dance on Saturday and a five mile bike ride on the Sunday. We visited Super Gran and Biker Gramps new house after the bike ride. The house is still empty and was echoey which sent Boy Wonder straight up! We only stayed for half an hour but he remained high but agitated for the remainder of the night.

The second week back at school seemed to be no different to the first. The afternoons brought a loud and distracted yet distracting Boy Wonder. On Tuesday the decision was made to collect Cat Girl and Boy Wonder from the classrooms rather than the playground as Boy Wonder going into the play ground was becoming an impossible task.

Oliver rehearsals increased to twice weekly this week which meant added concentration for Boy Wonder. Luckily the adult cast are now becoming more involved with the children to join the scenes together. Boy Wonder found the sessions really interesting and enjoyable and can now see how it is all working.

Wednesday night was consequently a late night but once settled he slept.

Friday 12 September 2014

Do as I say not as I do!

Wednesday morning we got up fairly early for breakfast as we needed to be in central London for 10.30am. Boy Wonder ate his usual toast and muffins and Cat Girl had cereal, yogurt and muffins whilst everyone else had the cooked breakfast.

We packed up the cars and headed for the tube station, establishing the holding hands rule before setting off. The train wasn't too busy to start with but when we switched to the tube it became busier and unbelievably hot. Boy Wonder was becoming agitated by this and was relieved to exit the station.

We got a drink and walked to the Houses of Parliament. Once in the line to be security checked we explained to Boy Wonder that he would need to be quiet and respectful as this was an important place of work for the people that ran our country and not many people get the opportunity to visit. Boy Wonder said that he understood and consequently behaved very well. Cat Girl also did very well to say that a lot of it went over her head.

However, we were utterly amazed at the distinct lack of respect that the M.Ps have for each other and the sheer lack of professionalism to say that they are deciding the 'rule book' for our country. The Prime Minister and other party leaders were in Scotland debating Scotland's independence but there were still some well known and 'respected' politicians there.  A certain gentleman spent the entire question time playing on his phone, others were also doing the same. They were chatting between themselves quite loudly when others were speaking and walking in and out as they pleased. There was also the usual jeering which I guess is a more accepted part of politician behaviour.

Boy Wonder was disgusted at what he saw and spoke about it a lot during the PMQs and after. We had no answers for him as we were equally as shocked. We agreed to write to Mr Speaker with our thoughts.

We were shown around the Speaker's House afterwards and then went into the cafe for a late lunch. The whole of the building was grand but with high ceilings and little soft furnishing it made for a very echoey environment. This was taking it toll on Boy Wonder who became more and more agitated.

We spent a couple of hours around London, having ice cream, going on a high swing ride and watching street entertainers. Boy Wonder was asked to join in with some of the milder acrobatics.

We left Central London by tube at about 3pm as Boy Wonder was becoming more and more unsettled. He became upset by the people begging on the street. This bothers him every time. We got off of the tube and went back to the hotel to pick up the car.

The journey home was very eventful as Boy Wonder kicked and thrashed around for the first hour. We were in Superman's smaller car so this became very difficult to manage. We stopped at a services, went to the toilet and picked up some snacks. After this he seemed to settle a bit better but once home  he escalated again, making for a very late night.

In hindsight it was clear that this trip within the first week back at school wasn't great  timing but the experience ( although not as we expected) was valuable.

Facial Expression Battles

School started back on Tuesday and to say I was dreading it was an understatement. Boy Wonder wasn't ready to go back and nothing further had been sorted out about his support at school, so in affect they weren't ready either.

The arrival at school went okay as although Boy Wonder was verbalising that he didn't want to be there, seeing his football buddies gave him a welcome distraction. I spoke with the TA about key holiday things, in particular the medication not being increased due to his weight loss of a further 1kg and the need for a supplement drink during the morning. I also spoke with both teachers about the burglary just in case either child mentioned in their 'What did I do in the holidays' work, making it very clear that it is done and dealt with and everything is okay.

I went off to work and spent a few hours doing the prep for the interviews ( for my job) as I have chosen to leave this role and work less hours as a consultant. As with many parents of disabled children, there becomes a time when you have to make that decision and for us it was when the hours spent in hospitals and education meetings started to out way the hours spent working. It effectively makes you unemployable which means that only two options remain - stop work altogether or work for myself part time with flexible working hours. I opted for the latter.

I parked on the school car park on pick up and walked into the playground. Boy Wonder came out as I was trying to get Cat Girl ( it is very busy in the first week due to the new reception children.) He started to run off and become very excitable, throwing things around. His teacher and I stopped him and she took him back into the classroom to get his weighted jacket and to try and calm him whilst I got Cat Girl. It took ten minutes to get her from the classroom, but once collected we met Boy Wonder and attempted to leave the playground. At this point he started to shout, throw himself to the floor saying that I was hurting him. The new Head teacher stood and watched with a look of shock on her face. Boy Wonder interpreted this as a cross look so reacted by shouting at her that he was a bad boy and to stop looking at him. We eventually got to the car, followed out by the TA and after a lot of thrashing about in the car he finally sat down. I explained to her that Boy Wonder's confusion with the new Head's facial expression and she said that she would do some work on facial expressions with him. It's so easy to forget that Boy Wonder is shockingly poor at correctly reading facial expressions in new people.

This evening we travelled to London with Boy Genius and family. They had been invited to Prime Minister's Question Time and asked us to join them. We arrived at the hotel and joined them for dinner in the restaurant. Both Boy Wonder and Boy Genius seemed to be still reeling from their first day back at school so moods were erratic and unstable. We did have a good waiter however, who gave us a quiet spot in the restaurant and was very good with the kids.  After dinner we took them back to the rooms to settle down. I settled Boy Wonder down by tickling his back and firm hold which took about an hour but eventually he fell to sleep. He looked exhausted!

Monday 8 September 2014

Getting Ready for the Return to School

The journey home was fairly straight forward except for a loo and change stop for Boy Wonder. We are noticing the day time incontinence creep back in as school looms.

We arrived home just before tea time and Boy Wonder went straight to his room for some Minecraft time. We unpacked and then all had a Chinese takeaway for tea. As it was getting late, Boy Wonder and Cat Girl settled down although Boy Wonder took quite some time to go to sleep.

We opted for a stay at home weekend in an attempt to allow Boy Wonder time to settle and to get some jobs done around the house. We weighed Boy Wonder on Saturday morning to find that he had lost a further Kilogram. We thought that he had lost weight and this confirmed it. We had a chat with him about having some build up shakes in the day and using a tonic. He agreed to give it a go and to also have them at school.

School stuff was checked and packed. Boy Wonder had chosen a new school bag that he liked and was happy when it arrived. Apparently it was very cool. He said little as we sorted through everything but later his mood deteriorated and he became anxious and agitated over the slightest thing.

The piano we ordered arrived on Sunday morning and although he was pleased to see it, Boy Wonder wouldn't play on it at all. He said that he had to get used to it first. We spent Sunday afternoon tidying out the garage. Both children helped and worked hard. I told them that they could share out and keep any money that they found. They managed a total of 20p! After dinner we watched a film together which was nice.  It was the Lorax and they found it highly amusing!

Monday - the last day of freedom! After a couple of little errands we spent the day around the house and in the garden. Boy Wonder was very tetchy and tearful throughout the day so I just let him do his own thing. By late afternoon he came round a little and had a go on the piano which he really seemed to enjoy. We then went to Oliver rehearsals. This was in the smaller room now and it made such a difference. He was able to focus through the majority of the practice and said that he enjoyed it.

A difficult night for settling down. Tears and upset alongside him being very clingy. Hopefully he will manage a few hours sleep.

Friday 5 September 2014

Adrenalin Junkies v's Windy Castle Trauma!

The last full day of the holiday and we all went to a theme park, home of Peppa Pig. Cat Girl was very excited! We were hoping that with the majority of children now back at school it would be less busy, we were right. Although we had the queue assist support for the boys we used it twice all day and that was to get onto the Peppa rides as the park's main customers were pre schoolers.  

The first rides we tackled were the bigger rides as the majority had headed for Peppa Pig World. Boy Wonder went on everything with his usual no fear approach. Boy Genius was a little more reserved as was Cat Girl who only liked the little rides. Boy Genius's younger brother required a little height booster being 1-2mm below the height for the big rides. Once on however, he had a great time and became Boy Wonder's adrenalin junkie buddy. 

We had lunch at the cafe near the splash park which was the usual substandard rubbish. The children put on their swimmers and ran around for a while.  They then went on the log flume to finish off the soaking before getting dry. 

This afternoon brought the long awaited Peppa Pig World. Cat Girl was in her element. She bought Superman a Daddy Pig cap which he of course,  loved. Boy Wonder became quite wound up here as it was a lot busier than the rest of the park but he did take Cat Girl on some rides with his pass. There were a couple of occasions here that Boy Wonder ran off at the first suggestion of where we may head next. This is becoming an issue now as he doesn't seem to have any regard for where we are and he is so fast that if we don't immediately follow he is out of sight within seconds. 

We finished the day by going back on the favourite rides. I took the boys on my favourite tea cups ride as I am the 'spinner!' Out of three boys, I made one a bit sick and the other two stagger off. We all then went on the pirate ship  which was great fun! 

Whilst I was 'entertaining' the boys on the big rides, Cat Girl had taken Boy Genius's Dad back to Peppa Pig World as she wanted to go on the Windy Castle. He had gladly accepted as he is not a fan of heights . Superman did try to warn him that Windy Castle was high but he didn't quite get the message. After a short while Superman followed them and found them just getting onto the Windy Castle ride.  This is a cloud carriage with a spinning wheel, a bit like a miniature big wheel. Cat Girl started to spin the wheel and was stopped by big sweaty, white knuckled adult hands gripping the wheel. They went up high and as Cat Girl bounced around in excitement, the responsible adult, who could barely keep his eyes open told her to sit still. Cat Girl enquired as to why his hands were leaking? He explained that he was scared of heights to which she responded 'But you're an adult?!' Needless to say that he was the point of ridicule for the rest of the day as Cat Girl recited the tale over and over! 

We left the park at closing and went on to a pub for tea that had a nice play area in the garden. They also served nice food which was a bonus. Boy Wonder was a little tetchy again by this point but held it together, though ate little.

We finished the night by going back to the caravan and watched Home Alone. In the morning we are traveling home via the little arcade on site and the Ferrari garage in the next town. Here's hoping for a good journey back to reality. 

Thursday 4 September 2014

Aping Around!

Tuesday brought a day at the forest park where the kids rode their bikes after having a go on the high ropes and zip wire. Boy Wonder loved the high ropes and ran round them as if they were on the floor. Cat Girl got half way across the first obstacle, panicked and cried and came back down. At least she tried! These two children are like chalk and cheese. It is nice though to have a child that shows emotion even if it is ten feet above your head! We went to buy a sneaky ice cream when she came off to cheer her up and then sat and watched the boys. 

Afterwards we stopped for a picnic and then got the kids bikes and they rode around the trails to the various parks. It was at this point that tempers frayed and Boy Wonder and Boy Genius seemed to bounce off of each other but not in a good way. Whatever one said or did, the other took the wrong way. It wasn't until two elderly ladies told them both off for climbing a tree that they joined forces to argue their corner. We left them to it as it really was a ridiculous thing to say. 

However things took a dive when Boy Wonder rode off on his bike and was out of sight for about fifteen minutes. He had followed the signs back to the visitor centre but hadn't stopped to wait or turn round and come back to us like he usually would. I went on ahead to look for him and found him sat in a bench at the visitor centre. He was crying and clung to me when I got there. I told him how worried we were and asked why he hadn't come back to us? He said that he didn't know where we were as he went to the ice cream shop and we weren't there. I explained that we were behind him so he only had to stop and wait or turn round and come back down the trail. He didn't seem to understand and was clearly very upset. This was now the second time during the holiday that he had just gone off without thinking. We regrouped and went for an ice cream before heading off to the last park. 

Boy Wonder remained tetchy and unstable in mood. His tolerance levels were low and because of this we decided to call in at a quiet pub to grab something to eat rather than drag the day out too much. This was a very bad idea as when we got there, Boy Wonder ended up in a stream of running water within minutes, up to his knee in mud with one leg. I pulled him out and explained that we would have to nip him back to the caravan to change. He got very upset and bolted over the fence. Superman went after him and caught him at the other side if the grass. We decided to call it a day and went back to the caravan. Boy Wonder was not in a good place. 

Once back at the caravan, Superman and Cat Girl went out to get some food whilst Boy Wonder and I thrashed out the difficulties using visuals and social scripts. The initial surface stuff came out first but this was quickly followed by him saying that he was worried about being in a strange place, not having a routine ( well  not a rigid one) and not wanting to go back to school.  We had a good chat and I gave  him lots of reassurance. We then agreed to watch Home Alone 3 with the takeaway that Superman and Cat Girl returned with .  After a chilled couple of hours we all went to bed. Boy Wonder settled very late again but had a nice lie in. 

Today we opted for a lazy day which started off by going to the pool. Boy Wonder has taken a liking to the sauna and steam rooms which is great as they are very warm ( obviously) and I don't like cold swimming pools!

After swimming Boy Wonder did his ice bucket challenge. We had lunch and then went for a walk to the beach. We stayed at the beach all afternoon and the children played lovely together. They built a huge castle with a moat and protective pebble walls. Afterwards we went to the beach cafe for tea and walked back to the caravan with more ice cream. 

We finished the evening off with a few games in the arcade and then went back to the caravan to watch the England match. A rather uneventful ( in a good way!) and chilled day! 

Wednesday 3 September 2014

Sticky buns and Crabbing

After a busy day we decided to opt for a beach day. We prepared a picnic and drove down to the beach a bit further up from the site. The intention was to go crabbing but the harbour car park was very busy so we headed straight for the beach. 

It was a very hot day, in the late 20's which was nice for the first couple of hours but then became unbearable. The children played in the sand and went into the sea. We had ice cream after the picnic and then after a while headed back to the cars. The planes were flying overhead on their way too and from the air show.   Super Man managed some good shots of planes that he had missed yesterday so was very pleased. 

Back at site we all met at the swimming pool before dinner. The children tried out the steam room and sauna with us. Boy Wonder especially liked them and returned with me a couple of times. The pool outside was nice but cool and the indoor pool was quite small but they kept us entertained for a while. 

Once showered and dressed we agreed with Boy Wonder that he could play on the park outside the changing rooms whilst I dried Cat Girl's hair and Superman took the swim stuff back to the van. However, when we went to the park he wasn't there. Superman found him wandering around back inside near the pool tables. He became agitated, thinking that he was in trouble and climbed on the roof of the play equipment, threatening to jump off ( it was quite high.) I talked him down, reassuring him that he wasn't in trouble but we were worried about him. Once down we sat on the bench and talked to him about wandering off and why he shouldn't do it. His anxiety soared and he attempted to bolt. I held him and attempted to reassure him but he fought me all the way. Super Man took over and between us we managed the firm hold technique to bring him down. He was also given his top up medication at this point.  If we would have let him go he would have run off or climbed back up high. He had little to no control of himself so it wasn't an option .  After a few of minutes of fighting us and a further couple of minutes of calming, he went off to play for a little while before going into the restaurant for dinner. 

In the restaurant Boy Wonder still appeared to be quite agitated but this settled down after a short while and he managed to eat his dinner.

Afterwards Boy Wonder and Boy Genius had a couple of games of pool which they played really well. We then headed back to the caravan to settle down. Boy Wonder struggled to settle and was up a couple of times through the night, eventually managing a few hours of broken sleep.

Monday was market day at the local town so we went to have a look around. The weather was changeable to say the least but we managed to have a look at the stalls. We bought the children a sticky bun to walk round with but Boy Wonder became quite preoccupied by the fact that they had been left out on the stall and were they clean? Luckily his has come from an enclosed tray behind the stall but he may have had a point about the others!   The boys purchased a friendship band for each other and a toy car each and Cat Girl bought a cat (of course!) 

A couple of us split from the group to go and look for other things and with Boy Wonder and Boy Genius we went through the underpass to see what was on the other side. It started to rain and plans were quickly changed which meant turning round and heading back through the underpass. Both Boy Wonder and Boy Genius became upset by this as they didn't seem to grasp the need for the  change and we didn't explain it very well. After some work to explain what was now happening Boy Wonder started to settle. We ate lunch in the car whilst waiting for the rain to pass and the went onto the park. It was clear that Boy Wonder's tolerance levels were very low and we would need to firm up our plans somewhat to give him some security.  

We went crabbing before returning back to the caravan to make tea. Crabbing was great fun and once the first crab was caught, Boy Wonder settled into it quite nicely. Cat Girl was not at all keen on the crabs but was happy to hold the net. 

Tea was nice and relaxed. Boy Wonder and Boy Genius spent quite a bit of the evening in the bedroom playing Minecraft but seemed happy enough until it was time for Boy Genius and family to leave for bed. 

Another unsettled night for Boy Wonder.....

Tuesday 2 September 2014

The Air Show



On Saturday we went to the airshow. Boy Wonder took his ear defenders and we explained that it would be very busy.  We went on the bus as parking would have been horrific. They all really enjoyed this. Cat Girl announced that she had never been on a bus before. We realised that she was probably right! 

We found a place on the pier that wasn't too crowded and near an older gentleman who  Boy Wonder fired his numerous questions at. The man seemed to enjoy passing on his knowledge so it worked well. After the first set of flights we went into the climbing centre which was a very good find. The children spent an hour and a half on various climbing walls. It was calm and quiet in there and with the added bonus of proprioceptive activity, proved to reduce the building anxiety. Boy Wonder finished off by performing the 'Leap of Faith' with great ease ( due to having no fear!) which consisted of climbing to the top of a ladder, walking out on to a platform and jumping into mid air to grab a 'punch bag' type piece of equipment before dropping to the floor ( controlled by a harness and pulley.) We all congratulated him but he didn't seem to get why it was a big deal. 

We left the climbing centre and headed outside to watch the Red Arrows. Superman had his camera ready and managed some good shots. All the children enjoyed the stunts which were very well timed to avoid collision! These guys are very talented. We headed off to get something to eat before attempting to catch the bus back. It was extremely busy so we thought that we had done well to find a quiet restaurant. However, once in and seated we noticed that it had a high ceiling and wooden floors which made for an echoey environment. This sent Boy Wonder straight up! He lost control quickly and started to shout, kick Cat Girl and generally thrash about. I gave him his ear defenders and sat next to him for a short while giving him a firm hug. He started to come down, looking through the air show programme and left the ear defenders on for the remainder of the meal through choice. The noise was obviously problematic. 

After dinner we decided to stay for the night performances and sat on the sea front to watch them. It was less busy now as most of the crowd were queuing at the bus stop, hence why we had decided to hang back a bit. Eventually we headed for the bus only to be told that the bus we needed had stopped running. It was only 8pm! The bus driver directed us to a different bus company where we could catch a bus to the local supermarket near our site. It was either that or a taxi which wasn't really an option as it would be stuck in traffic for a good while with its meter running.

We waited at the bus stop for what seemed an age. The children were fed up and tired, the roads were chaos and the queues of people were a mixture of agitated queue pushers and silly drunks. Eventually the bus arrived and the bus manager ( obviously sent in to manage crowd control) helped us get the children on the bus first. He ended up doing this twice as the first time it was the wrong bus! Eventually we were on our way and with the help of a few kids on the bus in front, Boy Wonder and co. were kept entertained ( and overexcited ) for a good part of the journey back. 

Once at the supermarket, Superman negotiated his way through the housing estate back to the site and we headed to the caravans. It was now about 10pm so we went straight to bed. Boy Wonder took quite a while to settle but in the early hours he fell asleep. 

The holiday begins ....

The holiday journey started fairly early on Friday morning due to the expected traffic travelling to the Bourneworth air show. The journey was fairly uneventful except for the usual resistance from Boy Wonder to stop for food. We arrived at the caravan site at midday. We met with Boy Genius and family and went for a walk along the beach, stopping for ice cream and a paddle ( which turned into a full dip in clothes for the younger two!)   We headed back to the site, picked up our keys and unpacked everything just as the food shopping arrived. 

Later in the evening after meeting up to have pizza we decided to go down to the entertainment. This consisted of the entertainers waxing each other ( we have clearly missed something here!), bingo which was unlike any bingo I have ever witnessed! ( the participants were echoing every number call's description I.e two little ducks, quack quack.) some of the descriptions were also very random. We decided that if we came in every night we would also get sucked in to this crazy behaviour! The children had left us right at the beginning of this madness to play pool and the 2p machines. We took it in turns to perform five minute checks on them as there was no way out. The evening went well until right at the end when Boy Wonder and Boy Genius had their pool game interrupted by Boy Genius's younger brother. (When together they don't include him very well so fights occur.) this resulted in Boy Wonder pushing him away from the pool table by his neck and me having to separate them. Boy Wonder ran, slipped on some water, banged his arm and bolted out to the smoking shelter and curling up in a ball. As I went out to him, he shouted to be left alone as I had hurt him which invited three half cut women who were out smoking, to involve themselves! After fending them off and getting Boy Wonder inside, he ran again and Superman intervened and caught him by his arm. Boy Wonder shouted out again that we were hurting him which of course got attention, especially off of the three women who had now come inside. I sat Boy Wonder down and explained that what he was shouting out was going to get mummy and daddy into a lot of trouble. I looked at the arm that he had fell onto and it was slightly red. We agreed to hold hands on his other side and walk back to the caravan calmly. Of course we were not nieve enough to think that this would happen but removing him from his audience was our only real aim at this stage! We arrived back at the caravan with some shouting along the way. Once inside he exploded into a barrage of 'I hate, I will do's' finishing in lots of crying and repeating of ' I am a bad boy!' Once calmer we explained that we cannot help him if he makes out that we are hurting him in some way as other people think we are doing wrong and  will involve themselves or ring the police. Boy Wonder was shocked by this as although this is not the first time he has done this, it is the first time others have involved themselves. 

Boy Wonder got little sleep that night so we let him sleep in for as long as we could. 

The week before the holiday

The last full week of the holidays before our holiday was a busy one, for the adults at least! The weekend bore witness to Supergran doing the Ice Bucket challenge which Boy Wonder became very excited about. Before that however he had helped to prepare dinner for us all. 

Bank Holiday Monday arrived with its usual heavy rain. Boy Wonder started his day by going into the shower, turning it to the coldest setting and then standing in it for 5 seconds. He then ran out of the bathroom and announced that he had done the Ice Bucket Challenge 'his way!' He nominated Biker Gramps.
We went to a play centre for lunch and to meet with the family that we are going on holiday with to discuss final arrangements. The centre was surprisingly quiet for a rainy day which was nice. This resulted in no real difficulties.

Superman had a day with the children on Tuesday and they completed some ore holiday chores like going food shopping. Boy Wonder doesn't cope well with supermarkets but is okay in Aldi. We think that this is another reason why Aldi is doing so well as it is small, less choice ( although enough for what you need) and isn't used as a social gathering opportunity. Go Aldi, we say! 

Boy Wonder and Boy Genius went to the outdoor adventure centre on  Wednesday and Thursday which they seemed to really enjoy. This place has proved to be a very good find as Boy Wonder loves it and they look after him very well indeed. When I collected the boys on the Thursday I was warned by the instructor that 'Your Son is black!' Nothing new there then I responded. ' No, really he is black and so is his friend!' They both arrived around the corner looking as if they had been down the pit! The only white bits were the whites of their eyes. Of course all of the other children weren't covered, just black 'war paint' stripes on their faces which had been the activity. They used ashes from the burnt out fire to do this. The boys were highly amused by it and had obviously enjoyed themselves. 

Whilst Boy Wonder had fun and Cat Girl did a raft of different activities with Grandparents and cousins, we went to work ( trying to fit two weeks worth into three days!), had the new external doors fitted and attended a meeting with the Local Authority regarding the proposed statement and the complaint that we had sent in. 

The LA meeting was with the heads of educational psychology and inclusion. In most part it was more of the same defensive rubbish and there was certainly no recognition of wrong doing or admittance of failure of the two professionals that we complained about. Instead they were defended and the school were brought forward as the decision makers and implementers with the LA's only real role being to agree the strategies, approve funding and review each year. On the back of this  it was agreed that the head of inclusion would meet with us and the school in the next couple of weeks to agree the statement. She made it clear however that Boy Wonder's condition isn't severe enough to have a full 25 hours and the SALT input was only a suggestion and not in the order. She did state however that an OT has been commissioned for the statement but wouldn't elaborate at this stage who it was, except that it wasn't ours as she was too expensive! ( we pointed out that she was already familiar with Boy Wonder and the school so therefore costs would be saved on all of this) We will discuss this further at the meeting as to who this OT is and if they are qualified to work with sensory modulation disorders.  The head of EP agreed that they will use our second opinion EP assessment to compare against their own work and formulate a document that considers both quite differing opinions. This is because they cannot afford to purchase a second opinion themselves.  So we will see. We made it clear that if we don't get what Boy Wonder needs as per the medical and second opinion reports, we won't hesitate to appeal for a third time as it is clear that Boy Wonder's needs are not being understood or met. 

So yet again it is a waiting game. The saga continues ......