Medication Minefield

Sunday was an early start for Boy Wonder as he had a rehearsal for the Jungle Book performance that he is in, in a couple of weeks. He coped with this well to say that it was a Sunday and not his usual day. 

In the afternoon he went on a long bike ride with Superman and the boy next door. They went for quite a few miles and came back looking shattered! Afterwards we met Boy Genius and family for tea at a nice quiet pub with a large garden where the kids could run around happily. It made a nice change as the weather was now quite warm too.

Today brought a hospital appointment to 'investigate' Boy Wonder's incontinence. In particular the bed time wetting and the urgency to urinate resulting in accidents during the day. It was an odd appointment as they were only interested in the incontinence and although they listened to the other matters made it very clear that their clinic dealt with the bladder. However this was followed up with a ' if the medication doesn't work then we will put it down to an autism thing.' Great, thanks. 

So we came out of the appointment with two more prescription medications, one to relax the bladder to make it less irritable and one to stop the kidneys functioning in day time mode at night. It seemed to be dished out in a rather complacent manner which bothered me hugely. Although I don't doubt that he needs help as the problem is becoming difficult for him now that he is getting older, it just seems that medication is being thrown at him from all directions.  This isn't in any way meant to be disrespectful of the medics that work really hard to try and keep him stabilised, however. 

I dropped Boy Wonder off at school and went to chew the ear off of his usual Pharmacist. He assured me that there shouldn't be any contraindications with the medication that Boy Wonder is on. He also reassured me that I wasn't being paranoid as one of the medications prescribed is specialist and not licensed for children. It's a flipping minefield! We agreed that he should try it up until the two week review and go from there. 

This evening started fairly calmly after a session of art therapy and football. However it all went a bit crazy when Boy Wonder's cat caught a  baby bird. It was still alive so we googled what to do with it and as a result put it in a makeshift nest back up in the tree. Boy Wonder became very loud and stressy so we came inside and attempted to settle him down.

He took his medication and after a battle of wills, finally went to bed to read. 

The Calming Sun Rise!

Although Boy Wonder had a fairly settled evening, he hardly slept and got himself up at 3am stating that he had heard the birds and wanted to see the sun rise! Superman coaxed him back to bed, explaining that it was a bit early, however whether he actually went back to sleep is doubtful!

Thursday was a better day at school although the end of day excitability / hyperactivity started early and he was at full throttle when I collected him.  He raced onto the school field and started to kick a football around, immediately getting into a scrape with another child. We left to go to dance and ju Jitsu before things escalated further!

Boy Wonder had a more settled dance session and enjoyed his first session back at football. Cat Girl managed to tie her ju Jitsu belt ( obi) all by herself which is not easy! We were very impressed .

It was the school summer fayre on Friday and in true British style the rain was set in for the day. I arrived at school after lunch to help set up and as previously agreed with his teacher, gave Boy Wonder his top up medication at 3pm. She was concerned how he would cope towards the end of the day and the opening singing for the Summer Fayre, I was concerned about how he would be at the summer fayre!   Superman said that he didn't look too good at the singing as he was very distracted and fidgety. We let him do his own thing at the fayre and he mainly stayed at the penalty shoot out. Getting him to eat was am impossible task and so he left to go to Ju Jitsu with a burger that he picked at in the car.

I spoke with the head during the course of the day, just a general catch up, and mentioned the lack of sleep due to wanting to watch the sun rise. She put her hand to her mouth and gasped. This was followed by a ' I think that might be me!' Apparently she had told the children in assembly that she was woken up the other morning by the birds singing. She got up and watched the sun rise and it was beautiful and calming. She then apologised profusely and we both laughed.

Cat Girl and I stayed behind at the fayre to clear up and then met the boys at home later. Boy Wonder didn't settle until very late but when he did go to sleep stayed there until 9am.

Boy Wonder had his grading today and moved on to his blue/ black belt in ju Jitsu. He now wants to enter a competition in September so hopefully this will respark his interest. The rest of the morning was spent getting photos for his Oliver performance licence and his football team membership. The photos aren't at all flattering but they do the job!

The afternoon was spent with the boy next door who stayed for tea. Boy Wonder was fairly settled throughout the day which was nice. He settled down at 10pm and appeared to be asleep before midnight which is unheard of lately.

Every Cloud ......

After a fairly restful night, Boy Wonder was charged up ready for the school sports day. This was Cat Girl's first one and she was excited! Superman kindly told the children that I would do the parents race as I didn't do it last year. Thanks for that!

We got ready, PE kits on, sun cream applied and plenty of drinks. It was already really warm and it looked set to last. The morning activities consisted of  group games which ranged from table tennis to basket ball. After dinner were the competitive races. Boy Wonder came second in the hurdles and second in javelin as his foam javelin bounced back. He wasn't happy about this but didn't overly react. Cat Girl enjoyed her relay race and also came second so they both did really well.

It then came to the parents race. It was Egg and Spoon this year and then a sprint. I won the egg and spoon much to the children's delight. It was now nearing the end of the day and I could see Boy Wonder getting more and more excitable. They went back to their classrooms and on collection the teacher came out and asked me to come inside to get him as he was very excitable. We went to the car and this escalated to throwing himself about and trying to run. When we got home he went up to his room. I followed him up a few minutes later with a drink and found him swinging in his hammock,  covered in blood.  He had, had a nose bleed and wiped it all over his face, arms and legs. It was also all over his desk and laptop. He sat there, not at all concerned playing Minecraft. I asked him why he didn't shout me for help? He said that he didn't need help as he was fine. Really?! I got him into the shower which he found very inconvenient. The nose bleed had now stopped so I explained that he needed cleaning up and so did his bedroom.

One thing that we could mostly rely on was that if he didn't recognise pain due to his altered pain threshold, he would generally over react to blood. Without this little safeguard he is becoming more and more vulnerable.

After an evening of Oliver rehearsals, he came home and watched football before settling down. He was late falling to sleep so had only a few hours. However, in the morning they had to be up a little earlier and go to breakfast club , but nether the less he complied.

At approximately 1.45pm I received a phone call from school to say that there had been an incident and Boy Wonder was very distressed and self harming. She went on to say that she was keeping him back from swimming and would stay with him on a 1:1. I explained that I was about an hour away but would set off now if needed. She agreed that, that would be a good idea.

I arrived at school and Boy Wonder who initially looked calm, jumped out of his seat in an excitable way. We spoke about the incident which started off as a minor falling out with a friend on the playground. Boy Wonder had then run off to hide in the willow where the TA found him. They went inside and talked about the falling out individually and together and apologised to each other. That appeared to be the end.  However when the teacher started the lesson, Boy Wonder got his book out of his tray and started to hit himself hard in the face with it. As they intervened, he took himself to the floor and started to roll around. They commented that he looked very distressed and tried to help him by putting his weighted jacket on. He took it off and threw it and took himself back to the floor. The decision was made to keep him back from swimming for his own safety. He reacted to this by getting very upset and crying whilst curled into a ball on the floor.

We talked about how he can recognise if he feels like this again and what he can do but it was clear that he couldn't relate the emotion to the physical so therefore would struggle. I further identified that he goes from controlled to uncontrolled very quickly do therefore there is a very small window of opportunity to intervene. The TA said that this had been evident today. I explained that this type of reaction happens quite a lot at home, Boy Wonder intercepted by saying ' No it isn't rare!' which made us smile. He then tried to communicate moreso by typing on the computer key board. I explained that we couldn't see what he was typing as the computer was off so he moved to one that was on and wrote 'yes' when asked if he was feeling better.

We went on to drama and ju Jitsu where he remained okay for the rest of the evening. It was clear that he had relieved his anxiety earlier and so it didn't spill over into after school. A little result I think!

New Weapons!

The sun shone this weekend and brought with it a fairly stable Boy Wonder, but not without sparks of  agitation. We didn't do huge amounts other than dance, playing in the garden and a trip to the local pub garden which all remained fairly positive.

The sparks came from the World Cup games that Boy Wonder had concreted into his head that he HAD to watch, no matter how much we explained to him that some were just too late. This caused tears, anger and anxiety which meant that on Saturday night he remained awake until 5am on Sunday morning as he couldn't settle. He came into us full of life telling us he wanted a cuddle, climbed into our bed and was asleep in less than a few minutes.

As a concequence of Saturday night, Boy Wonder remained in bed until midday. Once up he was very subdued and lethargic. This remained a constant throughout the day with a number of episodes where he just stared into space.

After a couple of hours in the country pub garden with family, we came home and they played football in the garden. Boy Wonder slept a little better on Sunday night.

Today, Boy Wonder took his pyramid into school that he had made at art therapy. This was for his project. He was particularly fascinated by the sandpaper texture, so much so that I thought he would take the skin off his fingers by continuously rubbing at it!

Boy Wonder attended art therapy again this afternoon and came home with wooden Mine Craft tools that he had made. As wonderful as they are, it took a matter of seconds before he started wafting them about with little consideration for anything around him.  Probably not the therapist's finest moment!

This evening Boy Wonder came swimming whilst Cat Girl had her lesson. He was reluctant at first but after much protesting actually got in and enjoyed himself . Once home they played outside with the neighbours until it was time for bed.

Cat Girl settled down and Boy Wonder watched some football before going to bed.

The Decision

Thursday evening also brought the news that we had been waiting for - the tribunal decision. It was on the doorstep on Cat Girl and my return from Ju Jitsu. ( our post is very late.) After a good couple of hours battling Boy Wonder's impulsive/ explosive behaviour, the news was very welcome!

In short the outcome was a WIN! Boy Wonder is getting his statement. The court order comes with a list of what they would expect to be considered in the statement and this predominantly focuses on therapy input from occupational therapy and speech and language therapy.

Friday was spent sending the decision round to our professionals to unpick it so that we know what needs to happen next. However, what is likely to be the case is that we will have to remain vigilant that the proposed statement which we will receive in 5 weeks is a true reflection of what he requires. The reason being that the local authority don't actually think he needs this level of intervention so therefore will go in at the bare minimum.

Anyway for now we will celebrate the victory and take a breath!

Boy Wonder woke up Friday morning and immediately announced that it was Friday! His day at school was better and a little calmer so possibly the peak on Thursday levelled him off a bit.

Here's to a chilled weekend! ;-)

Control Depleted!

The after school incident on Tuesday was responded to by school and we can now use the far end of the car park on days when he needs picking up straight after school. I spoke with the crossing lady to put her mind at rest and she was very understanding, offering her help should I need it in the future. I thanked her for this as it was a very genuine offer.

Wednesday brought a fairly excitable Boy Wonder at the end of school. They had been swimming and he had started to become bouncy on their return. However, we got to the car and to clubs relatively unscathed with the support of his tea time medication.

Boy Wonder had a hospital appointment on Thursday morning for a full neurological check and health check. The appointment was in the city and scheduled for 9am due to it being an urgent slot. We left early with Cat Girl deposited with Grandad to take her to school. We hit traffic all of the way and it took us over an hour and a half to get there. Luckily Boy Wonder was settled and engrossed in his DS, playing football.

On arrival he was weighed and measured. He has lost just under a kilo and has grown a little. The Consultant gave him a thorough examination and although happy that he wasn't suffering from increased pressure in his brain ( symptom of the Chiari) he did have a number of unexplained symptoms that couldn't be assumed to be soley down to anxiety. She ordered a full blood test and a referral to the dietician. She said that she needs to check for Coeliacs and iron / zinc deficiency amongst other things. She will then see Boy Wonder again when the results are back to look at the next step. She left his medication unchanged due to the weight loss and asked for continued monitoring of the vacant episodes.

On return to the car, I explained the appointment to Boy Wonder, clarifying the next steps. He acknowledged that he understood and I assured him that all was okay and he had done well. We arrived at school just after break, snack box in hand and a brief description of the appointment in his diary.

Thursday was the first day of parking in the car park and on picking the children up from school, it was evident that this would be needed! Boy Wonder was very high and excitable. He climbed on the outdoor table and jumped off in front of his teacher, something that he would never usually do. I removed him from the table and explained that he was wrong to do what he did. He immediately ran into school shouting that he had forgotten something. We went after him and found him inside with his cap shouting and doing what can only be described as gangster impressions in front of other children who looked bemused to say the least. The teacher came to the car with us where she witnessed Boy Wonder's attempt to escape and bolt, the shouting and thrashing around in the car. Cat Girl asked me to calm him down which he eventually did once settled with his phone. The teacher then went back inside.

The journey to dance and ju Jitsu was changeable as Boy Wonder was quiet one minute and loud and excitable the next. He attempted to ring people on his phone and spoke with Superman for a few minutes. I dropped him off at dance after giving him his tea time medication. I then took Cat Girl to ju Jitsu. Shortly after, I received a call from the dance tutor who said that Boy Wonder's behaviour was unmanageable and she needed me to come over. I advised her to take him out of the lesson and I would come straight over. Weighted jacket in hand, I got there within ten minutes and he had rejoined the lesson. Afterwards the tutor ( who knows Boy Wonder well) explained that she had taken him out of the lesson as he was throwing himself on the floor, not participating in the lesson and putting his head on the dance mirror looking like he may head butt it. Once she had him on a 1:1, she asked him about his behaviour and he said that he didn't want to do it but couldn't stop it. He then became very upset. After some reassurance he went back into the session and appeared a little more settled. I thanked her for her understanding and we had a chat about future management if she should need to do this again, I would come straight back and sit in the waiting room.

We went to the car, weighted jacket on and at this point he became very angry, locking me out of the car as I paid for the ticket and then kicking and punching the seats for about ten minutes. Superman met us at Ju Jitsu and wrestling Boy Wonder into his session ( Sensi pre notified and happy to help expel his anger) and I took Cat Girl home. Boy Wonder returned later still bubbling under the surface but less angry.

Let Me Go!!!

Monday morning was a struggle due to very little sleep. The World Cup is really scuppering an already fragile bedtime /sleep routine. Boy Wonder knows all of the fixtures and the times they are on. He is beyond obsessed and so it is proving extremely difficult to deter him without a total meltdown situation developing. He has it in his head that he has to watch it rather than it being optional entertainment.

He got through the day fairly unscathed but looked tired, arriving home from Art Therapy with a pyramid that he had made for his school homework project. Well that saves us an end of term battle! I arranged with the school head to have a meeting the following morning and then went to book the children in breakfast club to facilitate this.

Tuesday morning was an early start, mainly due to Boy Wonder getting up at 5am! Of course he didn't do this quietly which then woke everyone except Cat Girl who could sleep through a storm! We had to be up and out this morning a bit earlier due to a school meeting first thing so the early start ended up being a bit of a bonus.

After dropping the children at breakfast club we met with school to discuss various things from the swallowing of plastic to the range of difficulties that Boy Wonder is experiencing with school, other children and his anxiety levels. This led on to the inconsistency of information sharing and practice and the blatant disregard of his complex needs by the local authority. It has to be said that this meeting was probably the most useful to date as it enabled everything to be brought to the table and be discussed.  It was of no real surprise to us that the head knew little about the direct actions of the local authority, in particular the request for a second opinion assessment and its refusal plus the refusal of the deferral at the tribunal to obtain OT provision. We agreed on a number of points, one being that information provided after school would be more accessible so that I knew what I was dealing with once outside the school gates. We also agreed that if Boy Wonder has suggested that he had done something that is as good as him saying he has done it and it should be responded to in this way. Our main message was to stress his complexities, brought on by a dual diagnosis, which they seem to overlook, taking him at face value far too often and by them doing this, we felt that he was unsafe.  We came out of the meeting a bit more positive and hopeful that regardless of the outcome of the tribunal, the immediate matters would be dealt with.

We went off to work and through the course of the day took phone messages from Boy Wonder's Psychistrist asking about his EEG results. I explained that we would get these on Thursday when he is having a full health check. She appeared very pleased with this and asked to be kept updated.

On picking the children up from school I was met by Boy Wonder's teacher who told me about an incident at last break which resulted in him hurting a child by grabbing her wrist and not letting go. She went on to say how this was managed and also about the general high mood of the afternoon. Boy Wonder had needed some clear intervention to keep him on task.

We left the school through the front door as the gate was now shut and in doing so, Boy Wonder pushed his way through others and was off. I quickly made my way through with Cat Girl in tow and caught him. The car was parked just down from the gates but  the short journey was hard work. He struggled and tried to run, shouting out for me to let go of him several times.  We got to the car and he threw himself on the ground and wedged his foot in the wheel arch. As I attempted to untangle him he started to sing 'Let Me Go,'in the tune of the Frozen song at the top of his voice. I eventually bundled him into the car whilst Cat Girl waited patiently for Boy Wonder to settle before getting in. The crossing lady witnessed the event and looked a little traumatised!

We got home, dealt with further attempts to run off and climb on the roof of the treehouse before going inside and having tea and a medication top up. After half an hour he started to settle and we went off to piano and Oliver rehearsals where he remained settled and engaged enough to participate.

Once home Boy Wonder watched the World Cup game and eventually settled around midnight.

Messy v's Messi

The weekend had a rather messy start as Boy Wonder got up and deposited his soiled and saturated night wear all over the carpet. He appeared to have very little awareness of the consequences of this until Superman went through it with him and he was then very sorry. Superman said, however that he  didn't think he had realised he had had an accident until it was too late. After a good shower and some cleaning up we got ready for the day.

It was the summer fayre today at a place where I work. Boy Wonder usually comes along but we made the decision to let him go out with his 1:1 worker instead as it all got a bit much for him last year. This was a difficult decision as he does love going and essentially it is a service that works with adults with autism. However, he struggles with the noise and the games ( needing to win them!) so we thought with his temperament being so unstable it wasn't worth it.

Boy Wonder spent the afternoon bowling and playing pool. The original plan was to go to the cinema  but his worker said that he refused to go and became quite agitated, therefore bowling was agreed.

The evening brought a late England World Cup match that Boy Wonder stayed up for. Superman watched it at the pub , Cat Girl went to bed and I embarked on an ironing marathon! Boy Wonder shouted 'helpful hints' throughout the match and swung wildly in his hammock. Afterwards he became very upset as they lost and ended up in bed with me for cuddles.

Fathers Day began when Cat Girl and I returned from horse riding. The boys had both had a late night because of the football. The children gave Superman their cards and gifts and then we all went downstairs for brunch.

This afternoon we went to a National Trust hall and park. It was a little drizzly but we enjoyed it. The children did a quiz whilst walking round the hall and then we went for a walk around the grounds. The sun came out so we went onto a park where Boy Wonder got a bit of a reaction when he climbed to the top of a high pole ( which was part of the park but not really a 'play' bit!) he then climbed the spiders web a few times and dangled off of it in the prone position for quite a while.  Cat Girl was wearing a long summer dress today and looking very girlie. We noticed that Boy Wonder appeared to be more  aware of her and looking after her more than usual. We put it down to her looking more like a girl than a little sister. He knows that there is a rule where he has to look after girls ( although he wasn't able to apply it on Friday night!)  This observation probably makes little sense but we know what we mean.

We visited Super Gran and Biker Gramps, watched some Tom & Jerry and came home for tea and a visit from friends.

We were faced with a dilemma tonight due to the late showing of the Argentina match. Boy Wonder is totally obsessed with Messi and was insisting on watching it. Of course with it being a school night the answer should have been no. However, due to the fact that he very often isn't sleeping until the early hours and that by knowing the match was on, wouldn't sleep, I gave in but laid down some strict ground rules. He was to settle down for a couple of hours beforehand to get some rest, not shout throughout the match and go to sleep straight afterwards. So far so good! ....

Jinxed!

Clearly I spoke too soon as the two fairly good nights sleep were merely a taste of an idilic life! Boy Wonder managed a full few hours on Wednesday night and no more than two on Thursday night. He spent most of this night running up and down stairs, shouting out and being generally unsettled. The only thought to keep us sane was that he would be so worn out that he would sleep last night, but no. We are going for a hat trick it seems! In the meantime we look like zombies and Cat Girl is starting to look tired too, especially as Thursday night was a rather loud night.

Thursday was fairly uneventful although Boy Wonder managed to get a gold award for being a 'mini teacher.' There were an awful lot of supply teachers around that day so maybe his maths brain was required?! Well done Boy Wonder.

Yesterday I stayed for assembly as BoyWonder was showing his football trophies with his team. He was very proud and gave a very detailed description of events and their combined footballing skill. I later picked him up for his EEG appointment which soaked up the rest of the day.

The EEG was at the City hospital and on a Friday afternoon this made for horrendous traffic and parking conditions. As a result we were a little late but luckily they still saw us. We went into the room for Boy Wonder to be connected up to the machine. They started by reassuring him about what would happen to which he responded by telling them that he had been before and that he knew all about it, including the amount of wires (23) that would be placed on his head. He is probably one of few children that have an EEG file and is now moving into double figures with the amount of EEGs they he has had but with no outcome. We spoke about the more obvious aggression before an episode and the sleepiness afterwards and that Boy Wonder is now recalling some of them.   They did the usual light test and we watched Tom & Jerry on DVD and then it was done. We will get the results next Thursday when Boy Wonder sees his Consultant.

We left the hustle and bustle of  the City and headed for home via Pizza Hut for a late lunch. He barely ate anything at first so I had to insist and he eventually ate half of a child's pizza.

On the way home, the hospital rang to confirm Boy Wonder's appointment for next Thursday at 9am. That will be a very early start! The appointment had been brought forward, not only for the EEG results but because of the worsening difficulties with eating and possible weight loss, excessive chewing and swallowing of inedible objects, tummy aches, headaches and incontinence . These are not new symptoms but are getting worse and there is a concern that the constant anxiety and over stimulation of the senses is starting to have a physical impact on him. We had this described to us like  being on a theme park ride or watching a scary film. That peak of adrenalin that we feel at that moment is how Boy Wonder feels most of the time, hence why he is always over aroused and responds to the slightest impact on his senses.

In the evening, Cat Girl scampered up to her room to make Superman's Fathers Day card and we spoke about her day. She said that she got all of her spellings right. Well done Cat Girl. She then settled down with her laptop to play on Cbeebies with her cat.

Boy Wonder was outside playing and this was going okay until he grabbed the girl he was playing with and threw her to the floor. It was a huge over reaction to a tackle in football and on explaining this to him and asking him to apologise, it became evident that he was not in control. We said goodnight to his friends and he came inside to settle down. After a few exercises he watched football in his room.

Tribunal, Therapy and the Waiting Game

We attempted another relaxing weekend and seemed to achieve this, for Boy Wonder anyway! Cat Girl's weekend was full of parties, horse riding and  other stuff but she enjoyed it so all was good. Boy Wonder appeared to be fairly relaxed throughout except for one observed vacant episode which lasted approximately ten seconds.

We bought some therapy equipment over the weekend which included a gym ball, weights and stretch bands. After seeing the OT on Friday, we have decided that we need to put some proprioception exercises into the evening routine to help him to settle. Making the decision to install formal therapy sessions into Boy Wonder's routine is an odd one. It would be second nature to have physio sessions with a child who has a physical disability but with Boy Wonder we seem to continue to battle with the concept of 'normal.' However as discussed many a time in recent weeks we are coming to the conclusion that therapies, specialised support and protected sessions as appossed  to run of the mill opportunities, are the way forward. The logic being that by investing early and protecting Boy Wonder from his uncontrolled impulses, he will learn the skills required to develop his independence for his teenage and adult life, maybe.

Monday brought the day of the tribunal hearing which was beyond difficult. The half day session stretched into a full day and the judge grilled everyone one by one. This was quite different to the last tribunal as the judge and panel there went easy on us and grilled the local authority only. All of our witnesses stood their ground and in the end we felt that we had said what needed to be said. They all commented that this was one of the hardest tribunals that they had attended and between them they have notched up a fair few! The local authority spoke more than they did last time but appeared to skate over matters, claiming that they knew Boy Wonder and were knowledgable of his complex diagnosis. However, they struggled to back this up and as a concequence, a few chinks appeared in their armour.

Now it is a two week waiting game. In the meantime we are looking at our options, one being to have Boy Wonder assessed by a specialist school for children with autism where the full curriculum is taught as well as a social and emotion programme. We are hoping to get this done before the end of term.

I spoke with Boy Wonder's Consultant yesterday about our concerns with his health which were also discussed at the tribunal. She brought his appointment  forward for next week. He also has his EEG on Friday of this week so the results should be back for the appointment.

The last couple of days have been uneventful. No responsibility has been taken for the swallowing incident and getting them to observe for any future incidents is difficult to say the least!

The therapy sessions have started to have a positive affect so far as Boy Wonder's sleep pattern is very slowly improving.

Food 'V' Plastic

Wednesday was an odd day in that when I picked the children up from school, Boy Wonder was extremely quiet to the point where he barely responded to anything I was saying. We travelled all the way to drama in silence.  I spoke to his tutor on arrival about this presentation and explained that I was genuinely concerned about him and to observe more so for possible seizure activity. I spent the next hour ( after dropping Cat Girl off at ju Jitsu) in a mild state of panic! However on collecting him, I was told that he had been extremely hyperactive and intense. Very odd. He remained like this for a further hour and then reverted back to a very quiet, sullen presentation.  There was no obvious sign of seizure activity but nether the less it was a very different mix of  emotion.

On Thursday I went to a conference on Attachment Disorder which was a work related day rather than for personal experience, however they spoke a lot about excessive stress and the physical affect that this has on the body. We have been talked to about this by the Independent Ed Psych recently as she stated that she was observing signs of prolonged and intensive anxiety in Boy Wonder. In particular the eating difficulties, weight loss, tummy aches, headaches and intense chewing of fingers / clothes. These symptoms are being monitored by the hospital however and we will ask at the next appointment about the possible long term effects.

Two of the Grandads did the school runs between them on Thursday which proved a little difficult for Biker Gramps as he had to manage a rather volatile Boy Wonder coming out of school. They had had a change in the school day and this seemed to upset him quite a bit. This is hard work to manage especially with the amount of traffic around and keeping Cat Girl safe too.

Boy Wonder's sleep had been getting worse again so today I met with his OT for suggestions on relaxation. She has recommended ' squashing' which sounds like great fun!  Now to purchase a gym ball. We also spoke about the use of the weighted jacket for to and from school. The OT shared the concern about Boy Wonder's increased and almost constant heightened state of arousal and the possible long term complications that can arise from this.

I tend to work late on a Friday and on my return home read a rather garbled message in Boy Wonder's diary that loosely translated into the possibility of him swallowing something plastic at school. There was then a suggestion that he may have swallowed his finger nail instead. A brief observation would have ruled this out due to the fact that his fingernails are practically non existent!
I spoke to Boy Wonder about it and with a little exploration he told me quite clearly that it was a plastic insert and possibly the lead out of a pop up pencil.

I spoke with the NHS helpline regarding the swallowing incident who immediately advised A+E, however  as it was now late on a Friday night and he didn't appear to be showing signs of discomfort  ( not that this really means a great deal with Boy Wonder!) was this really necessary? Instead I spoke with a doctor who went through the necessary observations and was disatisfied that we hadn't been informed when it happened but reassured that it was now ten hours later so the chances of complications were now reduced.

Boy Wonder eventually went to sleep and appeared to be fairly settled.

School Sucks!

The holidays ended abruptly and school was upon us before we knew it. The last day was spent viewing a specialist school which was a total sanctuary. I would finally relax knowing that Boy Wonder was being cared for there, however our cautious side thinks that it may be a little too nurturing and not allow him to develop to his full potential.

The afternoon was spent at Art Therapy which Boy Wonder loves. The therapist explained that during the session the week before Boy Wonder was overly tired and quiet which was not like him. He also suggested a review of the sessions and possible reduction. I asked if this could be left until the summer holidays as there is so much going on for him at the moment that the art therapy remains the only real constant in the school day. This was agreed.

After a couple of hours with cousins and a swimming session, we attempted to settle them down for an early night due to school the next day. This wasn't an easy task as Boy Wonder was clearly fretting about the return. As a result he remained awake for quite some time.

The first day back as school brought immediate discussions about seizure monitoring and observations. The school agreed to put this in place for the next week. On picking them up from after school club, Boy Wonder greeted me with a repetition of 'school sucks' gangster style. After little success in shutting him up we left and spoke about his day in the car. He basically said that be had been bad all day as he is a silly boy. The diary reflected this somewhat.

The evening only proved to escalate matters and as a result he ended up out of control, throwing himself around and hitting himself over and over and having to be held. He later went in the bath to try and settle him but this proved only to give the bathroom a thorough wash!

Boy Wonder paced up and downstairs for most of the evening and into the night and was very late settling down.

Cat Girl had a lovely first day back at school and has learnt the Gingerbread Man story which she told us all about,  changing the end as she didn't like it!

We visited another school today which was for the more academically able child with autism. Out of the schools we have seen, this one seems to tick the boxes although I am still drawn to the one from the day before. It is just an information gathering exercise at the moment, however. We will have to see what next Monday brings.

Hold on to Your Hats!

Our intention was to have a quiet weekend; the calm before the storm. The weather was dull and overcast so we had a lazy morning and then went to the sports shop to get Cat Girl a horse riding vest and Boy Wonder some trainers.  Neither proved easy as apparently five year olds don't ride without lead so don't need vests. Needless to say that the smallest vest has a little growing room! Boy Wonder was happy to have new trainers as long as they were exactly the same as his old ones. This was an impossible task as they didn't have any so he settled on the same colour but a different brand. This was made acceptable by the fact that Lionel Messi wears football boots made by the accepted brand.

The afternoon was spent at home. Boy Wonder appeared to be a bit quieter than usual. I took the opportunity to speak to him about the vacant episodes and see if he was aware of them, being very clear that they were nothing to worry about it was just something that the Doctor was asking about.
To my surprise he immediately recalled the vacant episode in the hospital ( that I didn't mention to him at the time.) and when in Biker Gramps car. Later that afternoon he told us that it had happened again whilst we were all talking in kitchen. He said that be missed some of our conversation.

Today brought some glorious sun shine. Cat Girl had a very good horseriding lesson with her new vest which seemed to instill confidence in her. We came home and spent the rest of the day in the garden playing and digging to put down grass seed. Boy Wonder and Cat Girl helped to paint the fence but really only succeeded in painting themselves!

Super Gran and Biker Gramps visited and got set on as drink makers and child entertainers. By this point Boy Wonder had retreated upstairs. To re engage him we later went to the local pub garden with Boy Genius and family. It would be fair to say that the sun and hive of activity probably didn't serve as a good mix and BoyWonder became very loud and hyperactive and Boy Genius, frustrated.   However all children got an airing before we came home and settled down.

One more day off of school until they return. This could potentially be a very volatile week with Boy Wonder settling back in, seizure monitoring ( or possible refusal?) and tensions riding high in the week leading up to the tribunal. Hold on to your hats, it's going to be a bumpy ride!