And Now a Cat with Epilepsy!

This week has been a lovely week with less anxiety and more smiles. We have now replaced most of the items from the burglary, installed a very keen alarm system and gotten rid of the remains of stolen items such as wires and add ons for the consoles taken. I think that this has helped Boy Wonder to move on from the trauma, although XBOX need to hurry up with Fifa 15 and Minecraft to make everything complete!

Over the course of the week Boy Wonder went out with his 1:1 worker, spent time with Supergran and Biker Gramps and went to the outdoor leisure centre ( no incidents this week!) On Wednesday we went out with cousins, fruit picking. The strawberries had finished but we had fun picking the raspberries. Boy Wonder and older cousin went off a little way up the field to be independent and actually did a very good picking job. Cat Girl, younger cousin and the adults picked together and we all came out with a nice few punets of fruit. Cat Girl announced rather loudly that she had disposed of the bad ones and under ripe ones just like I do by throwing them under the bush! Whoops.

Tuesday night brought the Oliver rehearsal which Boy Wonder became quite upset about. We talked about it and he was able to tell me that he didn't like the noise from the other children when they were messing about ( they should only make noise when they are performing!) the room is also rather echoey and the rehearsal repetative. I asked him if he still wanted to do the performance and he said yes but the rehearsals were making him angry and giving him tummy ache. We agreed to talk to the staff about the problems. We did talk to the staff and as usual they were very supportive of Boy Wonder. They commented on how he he seemed to work much better in the smaller room upstairs and look happier. Tonight he looked pale again. The Director explained that there was going to be a change in venue from next week to the dance studio so this will be a lot better. He also asked if he could speak to Boy Wonder alone to tell him that he is doing well. I agreed and he promptly whisked him off for a pep talk! Whatever he said seemed to do the trick as he returned to the session with colour in his cheeks and a bounce in his step.

The cats were due their booster injections towards the end of last week and when taken to the vets in the car, Cat Girl's cat started fitting. We got them to the vets and had him examined. He had two further fits whilst in the vets. This resulted in a two day stint in the animal hospital whilst they performed tests and stabilised him. The blood results came back clear so they diagnosed idiopathic epilepsy and he is now being treated as such. Luckily he is now stable with the medication and seems to be back on form if not a little more cautious, staying around the house more so.   We explained to Cat Girl about her cat having epilepsy and needing special medication to make him better. Without hesitation she said ' Yes, he's special just like Boy Wonder!'  and laughed. I guess that's one way of looking at it!

I spoke with the OT about noise reduction ideas for Boy Wonder such as ear plugs. The difficulty is that he wants them to be discreet and although earphones work ( as a lot of kids wear them when listening to music ) he will only wear them as per 'the rules.' I.e not in classrooms, whilst eating etc. We agreed to try the old faithful, cotton wool!

This weekend we have two family gatherings. One being a party and the other a sit down dinner ( where Boy Wonder is cooking with Super Gran.) hopefully the sun will shine and Boy Wonder will cope with the busyness. We have pockets of downtime in between so all should work out and he is excited!

Activity Overload!

Wednesday was spent with cousins as we decided to go out for the day together. We planned to go to a National Trust place to do outdoor activities, however, the weather had other ideas and as soon as we got there it rained a lot! Boy Wonder, who seemed to be better after yesterday, became tetchy at the unsettled weather and the likelihood that plans would need to change. We stuck it out for a little while but in the end we had to give in. We decided to go back to cousins house to have an indoor picnic and then think about other things to do from there. The day ended up taking care if itself as the children played well together and we settled for a relaxed day indoors. This seemed to suit Boy Wonder well as he soon settled.

Thursday and Friday were spent at the outdoor centre for Boy Wonder. Stream walking, fire starting, den building and go karting were on the agenda. He seemed to have a great time and was very well looked after.

Boy Wonder and Cat Girl spent Saturday with Super Gran and Biker Gramps as we went to London to the theatre.  They went to a farm park where they fed animals, played, painted pot cats and watched a quail hatch out of its shell. Boy Wonder was fascinated by this, resulting in a patient wait whilst the chick pecked its way into the big wide world.

The rest of the weekend was spent around the house , fitting the burglar alarm system ( which was the  likely trigger for anxiety due to it stirring up memories)  and being visited by friends and family.  Boy Wonder was struggling to hold it together at various points, namely playing with more than one child and sitting down to eat. These are obvious trigger points for the majority of people with autism but tolerance levels change depending on other factors such as other stresses, illness, worry etc. This resulted in a near meltdown as Boy Wonder misread the signs of other children being daft and jokey. They were bemused by his outburst and he was just not getting it. After half an hour sat in his room on his computer ( Minecraft) through his own choice, he came down for tea and dealt with this by jumping up on the table, singing at the top of his voice and ultimately trying to control the environment. As soon as he had eaten, Boy Wonder went into the lounge and set up Top Trumps and demanded that everyone play. Luckily the Grandparents know the drill when he is like this and we agreed two games. However, there was then a knock at the door from the boy next door and he went into the garden to play with him.

The evening was one of ups and downs as Boy Wonder was clearly bubbling under the surface. Lots of rocking, baby talk and 'leave me alone' on repeat was pretty much the content of his settling down. However this didn't amount to anything more than shouting and eventually he calmed.

We received the response to our complaint to the Local Authority on Friday. As expected it covered none of the points raised and essentially was just a timeline of their intervention. It did however state that  an OT is being appointed to support Boy Wonder which it doesn't say in the proposed statement. We have a meeting with them next week to discuss matters further. And we will!

Not for Kids!

Saturday turned out to be a good day. We went over to a large shopping complex to look for a new games console. We hadn't been there before but chose this one because it was close to a bike rack that we needed to collect.

It wasn't too busy but the echo was immediately obvious. This is something that Boy Wonder doesn't cope well with at all and after a period of time will usually result in sensory overload. We had previously agreed to go to two shops, both to look for a console. The first shop was very helpful, the second shop had little to offer. We went for lunch whilst we made a decision on which to buy, however the restaurant was more echoey than ever so we encouraged Boy Wonder to sit there with his earphones in. This seemed to help. After eating, Superman took Boy Wonder a walk outside whilst Cat Girl and I finished and settled the bill.

The XBox One was the console that we decided on so we went back to buy it and got a very good deal on all the bits needed to go with it. Cat Girl also had her DS replaced and the new 'Olaf' game. The shop assistant proceeded to sing the Olaf song to her which she thought was hilarious. Boy Wonder gave him an odd look and then looked to us to give him an idea on what would be the appropriate reaction. To be fair we weren't sure either! 

The rest of the weekend was spent trying to set up the new console. Superman couldn't quite get his head around how flipping complicated it was. ' How is this for kids?!' The point is that these things haven't been for kids since the days of the Sega Mega Drive. These new contraptions are for students and geeks! Eventually after a couple of phone calls and a raft of emails, it was up and running. 

Boy Wonder went to an adventure day yersterday at the centre where he went to during the last holidays. He really enjoyed it and was most amused that he had to be rescued from the bank of the canal as his foot sunk in the mud. Once he had been pulled out, his wellie needed rescuing which caused great delight. Luckily the next stop was Cat Girl's swimming lesson so he had a shower whilst he waited. 

Today Boy Wonder went out with his 1:1 worker. They went to laser quest and to the cinema, however on the way home he fell asleep and on return home looked quite pale. We went to Oliver rehearsals but he started to look ill although couldn't say what was wrong (which is typical for Boy Wonder.) Eventually though he recognised that his tummy hurt and became very clingy. We decided to leave a little early and come home. 

Once home, Boy Wonder went to bed and although he stayed there and looked very tired, he remained awake and agitated, requiring lots if reassurance. 

Quite a Change

We intentionally used Sunday as a day to relax. Boy Wonder stayed around the house and played whilst I took Cat Girl to her riding lesson. She is really coming on now and riding with such confidence.

The day was police free but we had a few family visitors coming to make sure all is okay which was sweet. We later had friends over for tea who we hadn't seen for a while. The lady I have known for a number of years, initially through work but then she started to do some sessions with Boy Wonder and did this for a few years up until her retirement. She particularly focused on his autism and anxiety levels, working through solutions with him using visuals.

Later in the evening she commented that she had noticed quite a change in Boy Wonder's presentation. He seemed to be a lot less able to mask his difficulties and although was coping better with some things I.e joking and not winning every game of Top Trumps,' he didn't engage in conversation throughout dinner and was avoidant of all requests to join in. Although difficult to hear from someone who has known Boy Wonder so well, it was also a relief that it wasn't just us seeing this. ( it doesn't seem to matter how 'experienced' you become as parents of kids with ASD, you always seem to doubt your own judgement on your child's development/ regression, I guess it's natural!)

The week lent itself to some Club Inspire activities for Boy Wonder, a day bike riding with Boy Genius and some time with his 1:1 worker. It was a nice week of activities and towards the end of the week he seemed to be showing signs of being more settled. The Oliver rehearsal went very well as did his first proper football training session of the season.

I spoke with Boy Wonder's Consultant in the week who has increased his medication for ADHD a little in an attempt to gage the right dose before going back to school. She said she will then move the increase on to his 8 hour release medication as he cannot be medicated at school. ( school policy) She is going to see him towards the end of August for a full review. The blood tests came back clear except for one of the thyroid functions bring slightly out. This needs retesting in 3-6 months. The Coeliac test results aren't back yet.

As for the burgulary, Boy Wonder has given everyone a detailed description of events which means that he has now processed it and is starting to cope. The new doors are ordered, the alarm is being sorted and the insurance have done their sums. We are now left with the task of replacing the property stolen as they don't replace goods anymore just give the agreed monetary value.

So today we are off shopping. This will be a very structured trip and will consist of games console shops, electrical shops and a restaurant. We are then going to fetch a bike rack for the car on the way home.

Next week is the deadline for the complaint response to the local authority as well as a meeting that needs to be set up to discuss the statement. But for now we will enjoy the weekend and deal with the madness of next week when it arrives!

Burgled

It's been a rather difficult first full week of the holidays. So much for a slower pace and reduces stress, the week went from bad to worse!

Boy Wonder spent three days at the local outdoor leisure club that he went to in the last holidays and loved. This was fairly positive in many  ways as he mixed with children with various abilities and was well supported throughout. He went canoeing, go karting, high wiring, climbing and played archery. None of which wore him out but he had fun.

He also spent some time with his 1:1 worker and they went to an activity park and to the cinema. Today was spent going on a long bike ride with Boy Genius and family. Boy Wonder's activity was rounded up with a very positive 'Oliver' rehearsal.

Cat Girl attended a club that she seemed to enjoy but cried a bit ( very timid at times. Don't know where she gets that from!) She also spent time with Grandparents and cousins and going to parties. A lot of activity for one week!

It wasn't really the actual activities that scuppered the week but more the escalating ADHD symptoms, particularly the aggression and hyperactivity, the discussions with the local authority leading from the proposed statement and formal complaint that we have now heard initial correspondence from and to top it off, being burgled.

I will go into the SEN statementing lark when we get some feedback. Until then there is little to report other than it is a total farce of a system.

The Consultant is awaiting the blood test results before she can advise further on treatment of Boy Wonder's spiralling difficulties, until then we are extra, extra vigilant and taking deep breaths!

However, the burglary that happened a couple of days ago during the day whilst we were out has taken it toll on Boy Wonder and of course has unsettled the rest of us also. Practically every electrical gadget was taken, the majority belonging to Boy Wonder. The camcorder bought to record night seizure activity was taken as well as his tablet that had his scheduling apps on it.  The house was messed up and had to be left whilst forensics came the following day to get prints. Cat Girl cried and was unsettled by the whole thing, Boy Wonder was very angry and just didn't understand. After a couple of hours he realised that all of his Minecraft worlds had been lost as the XBox had been stolen . He cried a lot as this was weeks and months of hard work. He had sold old toys to buy the XBox so it was very dear to him.

The police have been very good. They spoke with the children and offered reassurance. Boy Wonder asked lots of questions on their third visit. He wouldn't / couldn't talk about it before, he said that he needed to think about it. He thought about it a lot as he told he police that we had not taken his advice  and installed an alarm after the last time (when the chickens got stolen from the garden.)
We talked a lot about statistics and if it would happen again and this seemed to provide some reassurance.

We went to a friend's wedding reception on the Saturday. This proved difficult as it meant leaving the house. Boy Wonder was very unsettled by this, asking repeatedly if the house was safe. We repeated what the police had told him to try and remain consistent.   We met Boy Genius and family at the wedding and sat with them. The afternoon into the evening went well in most part  but Boy Wonder was bubbling under the surface despite constant reassurance. This resulted in him and Boy Genius fighting outside and having to be split up for a while. It was worrying to see him at this level of aggression, having no real concept of his own safety or his friend's. he then tried to get away and found some broken glass on the floor which he smashed more so. After a little time to settle and an opportunity to 'make peace' with his friend, we headed off home. As we arrived on the drive, both children became nervous about going into the house which meant that we all went in and upstairs to bed together. This seemed to work and eventually Boy Wonder did sleep a little.