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.